essay about losing a child

The Loss of a Child: Stories from Three Bereaved Parents

As told to Sue Morris, PsyD

As director of Dana-Farber’s Bereavement Program , I regularly sit with bereaved individuals, listen to their stories, and help them navigate their lives after they have been completely turned upside down.

I recently spoke with three bereaved parents who are members of Dana-Farber’s Pediatric Patient and Family Advisory Committee (PFAC), to learn more about their experience of grief.

Here are their stories.

Jose was born in March 1994. He was a spiritual kid who loved to eat and cook. He was smart and intelligent, with a dark sense of humor. When Jose was 11, he was diagnosed with acute lymphoblastic leukemia (ALL) and began treatment at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center . Seven years later, while a senior in high school, he died.

I felt depleted after Jose’s death –spiritually, emotionally, and physically. I was exhausted not only from my immediate grief, but also the cumulative effect of caring for Jose for many years. After his death, I knew I needed to start taking care of myself, but I didn’t know where to start. Eventually, I found walking, working, and telling stories about Jose helped. I set out to build a bridge to a place where I could remember Jose’s life and the good memories.

My advice for newly bereaved parents includes:

• Don’t ask too much of yourself
• Take care of yourself and develop a routine that works for you
• Don’t anguish over conversations you did or didn’t have
• Teach those around you about grief and what you need
• Respect your grief
• Do one thing you enjoy
• Find a venue to explore yourself freely without judgment, such as therapy or a support group

I maintain a connection with Jose by going to places where he liked to eat and cooking his favorite meals, nourishing the positive memories of our relationship, and striving to be a better version of myself.

Kaylee was born in November 2003.

She hopped, skipped, and jumped through life, full of energy and humor.

It feels as though her diagnosis with acute myeloid leukemia (AML) was only yesterday. We had been putting up Christmas ornaments the Sunday before Thanksgiving in 2010, when Kaylee said she was tired and needed to lie down, which was unusual given how much she loved Christmas. Days later, she was admitted to Boston Children’s where she remained for the majority of the next five months. After several treatments, including two cycles of chemotherapy and a bone marrow transplant , Kaylee died on April 24, 2011 – Easter Sunday.

Immediately following Kaylee’s death, I was in no man’s land. A friend had to come over every morning just to make sure I got out of bed. But Kaylee had an older brother, Liam, and I focused my attention on him and just got through it. I wasn’t sure how I was supposed to grieve, or if I was doing it right. Kaylee’s care team was hugely helpful; they sent us bereavement materials and notes with their memories of Kaylee and Liam too, which was really cool.

Today, I have more good days than bad. Each June, my brother holds a golf tournament in Kaylee’s honor, and in 2014 I joined PFAC, which has been great therapy for me. Talking about Kaylee whenever I have the chance is immensely helpful.

I recommend other bereaved parents join a small support group, or find another outlet that works for them. For me, it’s been all about attitude – I know Kaylee wouldn’t want me to be sad or negative. I am using her positive energy and humor as guidance about how to grieve.

Tatyana was 10 years old in September 2008, when she was diagnosed with AML. She was an easy going, loving child with an infectious smile who cared deeply for others. Just prior to her diagnosis, Tatyana had joined a soccer team and got very tired during practice, seemingly out of shape. But weeks later we found out she had AML.

Tatyana was treated at Dana-Farber/Boston Children’s and declared “cancer free” in December 2009. Although she reached remission, she was now dealing with the effects of treatment, which resulted in a lung transplant in 2012. Tatyana died in her sleep in January 2015 of pneumonia associated with complications from her treatment.

Our old family died when Tatyana was diagnosed. We became “that family” – the one with a sick kid. Tatyana’s younger brothers kept us moving after she died. Finding support, especially from other bereaved parents, has helped me, and being a part of PFAC makes me feel connected, especially during tough times like the holidays .

• Take care of yourself – take all the time you need and do things at your own pace
• Forgive yourself if you veer off your timetable
• Make your needs known to others
• Find another bereaved parent to talk to
• Forgive people who aren’t there for you
• Remind yourself that people don’t know what to say ; it helps to understand where they are coming from

Clinicians also have a tough time when their patients die and might not know what to say or do. In an ideal world, this is what I recommend for them:

• Call later, maybe around the six-month mark
• Offer the opportunity to meet again several months later to revisit conversations
• Write a personal note
• Reach out to acknowledge the death
• Offer activities for grieving siblings and parents over a period of time, allowing them to gradually let go.

——

Even though I wasn’t fortunate enough to meet Jose, Kaylee, and Tatyana, listening to their parents gave me a glimpse into the lives of these vibrant children whose lives ended too early. It’s important for us to learn not to avoid bereaved parents, no matter how helpless it makes us feel. Grieving the death of a child is a devastating and isolating experience – one that no one should have to go through alone.

Why You Never Really Stop Grieving the Loss of a Child

For the rest of my life, I'll be missing the should-haves.

The day I realized Charlie would have turned 13 months hit me and hit me hard. Lincoln, my first started walking at 12.5 months. He should be walking right now. And for a moment, I imagined my life as if I were normal. I'd walk out of this room, and there he would be, toddling, getting into things he shouldn't be, pulling every book off the shelf, just because he could. He'd leave a constant trail of clutter everywhere he went.

I'd walk out of the room, lay eyes on him, and when he saw me, he would smile, a big toothy grin. He'd have six teeth. Drool would be dripping down his chin, a pool around the collar of his shirt. His brother, Lincoln, would be nearby. Lincoln could never resist staying far from him. They would be sharing toys, and I know Lincoln would be getting frustrated and throwing a tantrum in there. I also know that Charlie always laughed the most when Lincoln would throw a fit.

Charlie would be in the perfect hand-me-downs, all the clothes I couldn't resist buying on the Target clearance racks for Lincoln, Charlie would be wearing them in with the same chubby thighs, bulging belly, and perfect arm rolls.

He'd be saying momma right now. He'd cry my name out when he would get mad, and you know what? I wouldn't even mind for one second. I'd do anything to hear "momma" just once from that sweet voice.

And when he cried, I'd scoop him into my arms, hold him like the baby he once was, and I'd kiss his perfect lips. I'd tell him that his mommy loves him, and that I'm right here as I rubbed his sandy blonde hair, and wiped the tears as they rolled down his cheeks.

It's fun to play pretend. It gives my heart a moment of relief. That's the way it should be — Charlie, healthy and whole and in my arms. Me, the mother of two boys who keep me running constantly with tired eyes, stained shirts, and an overflowing heart. This is the way it should be, except seven months ago, when his little lungs became too sick from congenital heart disease and pulmonary hypertension, I held him in my arms while he breathed his final breath, and I kissed him for the last time.

I didn't just lose a baby. I lost a toddler. 

I lost a goofy 3-year-old, making mischief, causing me stress, and making me giggle at his silly comments.

I lost a kindergartner, backpack on, running to kiss me with sweaty blonde hair and dirt under his fingernails at school pick-up.

I lost a third grader, helping him with math problems, and still tucking him in at night.

I lost a preteen. Reminding him to put his deodorant on everyday. Reminding him that no matter how insecure he might feel, his mom will always have his back.

I lost a high schooler. Cheering him on at a game, helping him prep for his first big date, watching as he grows into independence as a young man, one that I raised.

I lost an adult child. One who I would love forever, because no matter how old I will grow, he would always be my baby.

All the things Charlie could be. All the things he should be. I lost, and instead I hold a child-size walnut urn and cling to every memory I hold from six and a half months in my arms.

When we lose our children, we don't just lose them at the stage they were when they passed. We lose them at every stage we missed, and our hearts will forever ache with that knowledge. There's a whole crock of crap that says grief follows a method. It stays neatly in lines, clean, tame, strategic. When a child dies before a parent, there is nothing normal, neat clean, or tame about that. 

For the rest of my life, I'll be missing the should-haves. His little years. His growing years. The moments he should be making me rip my hair out, then the sweet ones, like the day I take him to get his license. Or the day he tells me he is going to propose. Or the day that he becomes a father. I'll never get those days. Grief will never be methodical or neat.

And one thing I've learned from mothers much further along in this journey than me: grief doesn't end. Out of a broken, beating heart comes endless love as it ebbs and flows through the constant cycles of grief. Sometimes gentle, sometimes heavy. The reminders are always there. The love is always there. After all, a mother never stops loving the child she carried.

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Parents Who Lost A Child Share What They Wish More People Understood

Senior Reporter, HuffPost Life

When a child dies, many people’s thoughts immediately go to the grieving parents. It can be difficult to fathom what they’re feeling or figure out what to say in the aftermath of such a devastating loss.

“Losing a child is a unique type of grief,” said Kimberly Schlau , whose daughters Kelli and Jessica died in a car accident in 2007. “The natural order has been disrupted. Most people have suffered the loss of a parent, grandparent or spouse, but most have not experienced losing a child, especially in an abrupt and tragic manner,” she added.

“As parents, we expect our children to make the world a better place. We have hopes and dreams for them,” Schlau continued. “So we not only grieve the loss of the child; we grieve the loss of what could have been.”

As well meaning as people are, many seem to fall into the same patterns of misconceptions and mistakes when dealing with grieving parents. Whether the child was fully grown or still a kid at the time of their death, the caregivers who loved them are likely in deep pain, so it’s crucial to be sensitive and take your cues from them.

Speaking to HuffPost, Schlau and other parents who’ve lost a child described what they want to tell people who don’t understand this kind of grief:

I want to talk about my child.

“I wish more people understood how much I want to talk about my daughter,” said Jessica Fein , whose daughter, Dalia, died of a rare mitochondrial disease in 2022.

When people learn that Fein has lost a child, they tend to just say “I’m so sorry” and nothing more.

“Once in a while somebody asks ‘what was her name?’ or ‘what was she like?’” the mother said. “This feels like a door opening, inviting me to talk about my girl. People have told me they don’t want to bring her up and risk ‘reminding me’ or ‘making me sad.’ Do they think I’ve forgotten? Yes, it sometimes feels heartbreaking to talk about my daughter, but it’s even more heartbreaking not to be able to.”

Don’t hesitate to reach out with a kind thought when you’re reminded of someone’s lost child as well.

“It’s so lovely on the child’s birthday or anniversary of their passing to just send the text ‘I’m thinking of you,’” said Dolores Cruz , whose son Eric died in a car accident in 2017. “And say the child’s name. Parents are afraid people will forget about their child. Say their name. Don’t be afraid you’ll upset us. It feels so good to have someone talk about them.”

Time will not ‘heal’ this loss.

“The phrases ‘time heals everything’ or ‘you need time to heal’ are not correct, because you never heal from the loss of a child,” said Karen Wallace Bartelt , who lost her son Randy to a drug overdose in 2018. “What you do is learn to live with it, just as you learn to live with any type of horrible disease or other bad experience. It’s not going to go away or get fixed, but you learn to deal with it. You find a place for it and carry it with you so you can function and find happiness.”

She emphasized that even if she seems to be doing great, that doesn’t mean she’s gotten over the loss of her child. She has simply adapted.

“Yes, life continues, and we will find meaning and experience joy in time,” echoed Casey Mulligan Walsh , whose son Eric died in a car crash in 1999. “But those moments of joy don’t undo or negate the emptiness we still feel in the absence of our beloved children.”

She used the analogy of three jars, each successively larger but with the same-sized ball resting at the bottom.

“In the early days of our grief, the ball consumes nearly the whole jar,” Walsh said. “It’s all we can feel, all we can see, and everything else feels crammed in around it. But as time passes, our lives expand. That ball of grief is still there, still as large, but the rest of our lives have grown. It’s that way with grief. We hold on to that ball of grief ― though maybe it’s more a ball of sweet memories now than it once was ― but we allow ourselves to embrace the life we’ve been given, too.”

“Yes, life continues, and we will find meaning and experience joy in time. But those moments of joy don’t undo or negate the emptiness we still feel in the absence of our beloved children.” - Casey Mulligan Walsh, whose son Eric died in 1999

Platitudes and euphemisms don’t help.

“The old platitudes ― ‘he’s in a better place,’ ‘at least you have other children,’ ‘God needed an angel’ — are more than unhelpful; they’re harmful and make grieving parents feel unseen,” Walsh said. “For me, the best thing anyone could say was this: ‘I’m so sorry this has happened to your family. I’m here to listen.’”

Oftentimes, people have good intentions when they say something like “he’s in a better place.” But even if the grieving parents are religious people, that’s likely not what they need to hear.

“I do believe that Randy is with God and that I will see him again. But it doesn’t lessen my grief in any way, shape or form,” Bartelt said. “When people say, ‘Now he’s in a better place,’ I think: ‘No, he was in a good place. He was here with me.’ It almost makes me angry because the message these platitudes send is, ‘You shouldn’t be feeling this way, because he’s in a better place.’ But I feel shattered, and I need to grieve.”

She noted that she dislikes hearing people say her son “passed away” because it seems as though they are softening what happened.

“He died. He’s not with us anymore. And when people use the words ‘pass away,’ it’s almost like it’s not quite as horrific as it really was,” Bartelt explained. “But losing your child is horrific, and that phrase seems to just be making the person who’s speaking to you feel better while you feel worse.”

Please don’t compare this to losses you’ve experienced.

“I want to emphasize the importance of listening without trying to fix or compare your own losses to the person who’s lost a child,” said Jacqueline Dooley , who lost Ana, her teenage daughter, to cancer in 2017. “I love my pets, but when people brought up the loss of a dog or their elderly grandmother right after Ana died, it made me feel worse.”

All loss is painful and deserves acknowledgement and grieving. But keep in mind the extra layers of grief around a death that feels so unnatural, as with a child dying before their parents.

“Please do not compare losing a child to losing a pet,” Schlau urged. “I love my dog. His name is Oliver, he is my ‘therapy’ dog and I call him my ‘furchild.’ I will be devastated when he dies. But I would never compare that loss to losing my children.”

Even if you have lost a child yourself, try to avoid making direct comparisons when you talk to a fellow grieving parent.

“Everyone’s grief journey is different, and there are also different types of losses that elicit all kinds of emotions,” Dooley said. “Ana died after a long illness, but I know people who’ve lost children to accidents, murder, suicide and sudden acute illnesses. Yes, we’ve all lost a child, but their pain and grief take a different shape than mine.”

Don’t rush my grieving process.

“There literally is no quick fix or time frame to grieving a child,” Dooley said. “Give people the time ― and grace ― to move through it in the way that works for them.”

Author Lehman Riley wanted more people to respect his grieving process after his daughter Lizzy died in 2020.

“People tried to rush my grief, saying things like: ‘It’s been three months. You should be more OK,’” he said. “I’m still grieving. I wish people wouldn’t have been so inconsiderate, and instead had given me space and time to process it and grieve the way I needed. So many people invaded that space I needed and told me to be brave or said, ‘This is what I would do if I were you.’ But you don’t know what you’d do if this happened to you.”

Don’t tell a grieving parent to “get over it” or point out how many months or years have passed. These comments are hurtful.

I’m not contagious.

“I wish people would understand that my grief isn’t contagious,” said Joanne Cacciatore , whose daughter Cheyenne died as an infant in 1994. “I can’t tell you how many people whose child dies say they feel like lepers in their community because people see them in the grocery store and turn the other way. Or if they don’t avoid them physically, they do emotionally. They offer superficial platitudes like ‘everything happens for a reason.’ They’re afraid to acknowledge the grief.”

She recommended approaching parents with compassion and love. Make it clear that you are thinking about them and want to know how they’re really doing ― if they feel like sharing.

“The advice I would offer to someone who doesn’t know what to say to a grieving parent is to just say, ‘I’m sorry, I don’t know what to say,’” Schlau told HuffPost.

“Honestly, a genuine hug, smile, or simple ‘I’m here for you’ is the best action. I had people at work literally turn around if they saw me in the halls or building lobby. At the time it hurt, but now I understand why: They didn’t know what to say or how to approach me. Just be honest with the parent and let them lead the conversation. I guarantee the majority of us welcome the opportunity to talk about our children.”

Community support is important, but don’t make it about you.

“A child’s death may seem like it’s a family tragedy, but it’s really a community tragedy because it affects everyone,” Cacciatore said. “We all need to respond in accord to support the grieving family. We owe this to each other. When a child in the family dies, a house becomes a house of pain. If we don’t respond as a compassionate community, and circle around the family and prioritize their needs and well-being, eventually this ends up affecting everyone.”

She emphasized that those aiming to support the bereaved should not make the tragedy about themselves.

“I worked with some of the families who had loved ones killed at Sandy Hook Elementary,” Cacciatore said, referring to the site of the 2012 school shooting in Newtown, Connecticut.

“They said it was so highly publicized and there was such an outpouring of love. But there were certain people who made the loss about them, even though their child wasn’t killed. That’s hurtful. While the community has a responsibility to the grieving family and such a tragedy can affect all of us, remember this is the family’s loss.”

“When a grieving parent says they’re having a hard day, please understand that it doesn’t matter how long ago or recently their child has died.” - Erica Landis, whose son, Noah, died in 2010

There’s nothing linear about this.

“I wish more people understood how nonlinear this is,” said Erica Landis , whose toddler son, Noah, died in a pool accident in 2010. “For me, it’s been almost 13 years since Noah died, and I can honestly say the shock never goes away. The triggers are both predictable and surprising: a swimming pool, the smell of chlorine, the sound of an ambulance siren, seeing a little boy who looks like him. But the unpredictable triggers can be even more powerful.”

When she recently purchased a new vacuum cleaner with a retractable cord, she felt “punched in the gut” with a memory of Noah loving this feature on a vacuum they owned when he was still alive.

“He would laugh and pull the cord back out for me to do it [retract the cord] again,” Landis recalled. “It took 13 years for that memory to come back. And I was instantly transported to that living room from three apartments ago and all the emotions that went with it. And I felt like he was taken from me all over again. So when a grieving parent says they’re having a hard day, please understand that it doesn’t matter how long ago or recently their child has died.”

Schlau shared a comparison her therapist made between dealing with grief and standing in the ocean.

“Sometimes it’s calm and you can see the waves coming, so you can brace yourself for the impact,” she said. “Sometimes those waves hit harder or blindside you, and knock you on your ass. Fight your way back to your feet, stand up and start again.”

There is indeed no timeline for grief, and no clear markers of progress. Everyone’s journey is different and ever changing.

“You might see somebody who lost a child looking pretty good one day ... and think, ‘Oh, they’re doing so much better,’” Cruz said. “They may look like that on the outside, but I can guarantee you that their inside is still pretty torn apart. And they might not look as good next time you see them.”

Don’t assume what I’m feeling.

“When my son Eric died at 20 in a single-car crash, my world stood still,” Walsh said. “Because of the many losses I’d already experienced and the struggles we’d both had in the years leading up to his death, while I grieved deeply, I also embraced a peace that carried me through those unthinkable days of early loss.”

This sense of peace was unexpected for those around her.

“I wish others had understood this ― that I wasn’t numb or in shock as everyone assumed, but that peace can sit beside sorrow,” she said. “Every loss is different, every path to that terrible day is different, and people need to grieve in the way that feels natural and right for them.”

Grief manifests in a wide variety of emotions, from anger to relief to guilt. Don’t presume to know which one a parent is experience at any time. Simply validate what they express they’re feeling and offer support.

This loss brings an identity shift.

“Losing a child is a complete identity shift,” Fein said. “Inside I will always be the mother of three children, but now my inside doesn’t match my outside. There’s a sadness that permeates even ― and especially ― the most joyful moments.”

Although the grief process is always evolving, there is also a permanence to this reality. Nothing can be fixed.

“I don’t think there’s any way to understand the shift in worldview that comes with immense grief unless you experience it. The change in identity when you lose a child is catastrophic.” - Jacqueline Dooley, whose daughter Ana died in 2017

“The death of a child is so catastrophic and traumatic that the life we lived as parents before the loss can never be the same again,” said Katja Faber , the mother of Alex, who was murdered in 2014. “When my son was killed, what was normal ceased to exist. A part of me died, and I was forever changed.”

Faber described feeling as though she’d entered a parallel world and spending many years trying to find herself again, or rather the “new” her. She also emphasized that because her love for her son is everlasting, her grief will similarly never end.

“I’m never going to get over the loss of my daughter,” Dooley echoed. “That doesn’t mean that my life is over, but it does mean that I’m an entirely different version of myself than I was before Ana died. I don’t think there’s any way to understand the shift in worldview that comes with immense grief unless you experience it. The change in identity when you lose a child is catastrophic.”

Because I know deep sorrow, I also know immense joy.

“Though I will grieve the death of my son forever and then some, it doesn’t mean my life is lacking happiness and joy,” said Angela Miller , whose toddler son Noah died 15 years ago.

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“Quite the contrary in fact, though it took a while to get there. My life is more rich now. I live from a deeper place. I love deeper still. Because I grieve, I know a joy like no other,” she added, calling this “the alchemy of grief.”

“Because I’ve clawed my way from the depths of unimaginable pain and sorrow, when the joy comes ― however and whenever it does ― it is a joy that reverberates through every pore of my skin and every bone in my body.”

Surprisingly, grief can bring “gifts,” she said.

“These gifts don’t in any way make it all ‘worth it,’ but I am grateful beyond words for each and every gift that comes my way,” Miller said. “I bow my head to each one and say, ‘Thank you, thank you, thank you.’ There is nothing ― and I mean absolutely nothing ― I take for granted now. Living life in this way gives me greater joy than I’ve ever known possible. I have my son to thank for that. Being his mom is the best gift I’ve ever been given. Even death can’t take that away.”

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Huffpost shopping’s best finds, more in life.

After losing a child: We are a family, but we grieve alone

My daughter’s absence was like a wound, raw and weeping. Everything we did together reminded us of who we had lost.

Once I got married and became a mother, I understood that my whole self wasn’t just about me any more. My life revolved around the other members of my familial collective  – my husband, and my two daughters. Four was the number that felt complete.

My world was driven by this new connected identity. We did things as a family, planned holidays as a family, and made decisions for the good of the family – mainly, the children – rather than the benefit of one specific part of the whole.

And we were whole. That’s how it felt to me  – whole and perfect and never alone. Yes, it could be overwhelming, but I’d be lying if I said I didn’t miss that time when we all fit together like a perfect, seamless puzzle.

I took life for granted. I was perennially distracted. I was too wrapped up in the day-to-day bustle of raising the girls and keeping the family machine running to worry about what the future would look like. I stopped paying attention to each individual piece of the whole. I assumed the way we existed – as a family of four – would last forever.

That blurring of boundaries set me up for a massive identity crisis. It blinded me to the fragility of my family. It left me vulnerable to the devastating soul-deep loneliness that overwhelmed me when one of my children died.

Was it ever real? Was I deluding myself even then? I’m convinced that the version of my family that I’m remembering was, in fact, a dream.

I don’t know if other families have a sweet-spot moment in their existence the way mine did – or the way that I remember we did. We were far from perfect. We were a tangle of shoes, cluttered tables, dirty dishes, and dinnertime chaos. We were bedtimes and bath times and Pixar movies on Friday nights. We were oblivious to the privilege of our own oblivion.

I sat at the helm of that version of us – navigating the constant stopping and starting of school years, riding the crest of the seasons, wrapping my dear ones in holiday trimmings, and (of course) charting the growth spurts and milestones of my girls as the years passed.

This didn’t stop when my older daughter, Ana, was diagnosed with cancer at the age of 11. If anything, we became more tightly bound through long hospital stays, home isolation, a bucket-list of dream vacations, and the constant heavy certainty that she (we) wouldn’t survive. We crammed it all into the almost-five years between the day of Ana’s first hospitalisation and the day she died.

She died. Our world fractured. It wasn’t so much that we became suddenly, brutally, a family of three. It was more like we unbecame a family of four.

During the earliest days of deep grief, I floundered for a familiar family cadence that no longer existed, grasping for a way to survive the terrible pain of losing Ana. I was desperate to stitch the three of us back together, to find ways to reconnect with my husband and younger daughter, Emily.

At 12 years old, Emily had been intent on carrying on as if nothing had happened. She was watching me closely back then, no doubt afraid that if she looked away, I might disappear too.

Losing Ana destabilised the entire foundation of our lives. It reverberated through every peak and valley, changing how we each saw the world and interacted with each other. We became a table with three legs, a map missing one direction, a tripod of grief.

We were forced to reconfigure our relationship as a family and reexamine our individual identities. This was essential for survival. Ana was gone and we all shared the bottomless emptiness of her absence, but we experienced grief separately. We could not help each other. We were adrift in our individual bubbles of agony and though we had a sense of the terrible pain we were all experiencing, there was no way to rally together as we had done in the past.

We had lost the fourth direction. We had no idea how to find our way back to each other. At least at first.

A long time ago, someone told me that I should enjoy my kids while they were still small. “It goes by so fast,” they’d said. “Cherish these years.”

I didn’t believe it would go by fast, not when I was still in the thick of it. I thought their childhood would be a slow burn. I knew our family dynamic would shift as the girls got older, but I figured this would happen gradually and we would adapt in ways that kept the four of us closely connected forever.

Then, suddenly, there were only three of us. Grief wedged itself between us and for the first time in almost 16 years, I could not get comfort from my family. I needed to talk about Ana – all the time, every day. My husband needed to mourn quietly and privately. Emily needed to pretend she had never had a sister at all. We tiptoed around each other for the first six months. Ana’s absence was like a wound, raw and weeping. Everything we did together reminded us of what – of who – we had lost.

Three place settings at the table meant we stopped having dinner together.

Reminders of how Ana had loved a certain park or food or grocery store meant we avoided all of these things.

Celebrations, holidays, birthdays, and events that we’d once anticipated and loved went by with little or no fanfare.

The house fell quiet. We suffered deeply and we suffered alone.

The fracture that occurred in my family, the ongoing repercussions of losing someone so central to our collective and individual identities, and the perpetual pain of missing Ana did not go away. This is what we’re still learning to navigate four years later.

And yet, we’ve managed to cobble together a new kind of family. We’re smaller. In some ways, we’re less connected. In others, we’re closer than we’ve ever been. I am learning to recognise the difference between grief and loneliness, but also when these two feelings intersect. I’m learning to understand and honour the fact that my grief is not their grief and that this is okay.

We all grieve differently. We experience trauma and pain differently too. This has been my loneliest realisation. I could not go with Ana when she died, but I wanted to. I ached to hold her hand and descend into the unknown with her. But, of course, she had to do this alone.

I can support Emily as she navigates grief, but the full realisation of what she has lost – something that she is finally beginning to understand now that she’s 17 – is hers to grapple with on her own. Honouring this in a way that supports Emily without diminishing the way she grieves is something I’m working hard to do. I can’t drive the ship the way I once did. Letting go of that former role – that former life – is hard. But it’s also a bit of a relief.

In the past four years, we’ve learned to accept the new shape of our family. Emily is finishing up her third year of high school. I turned 50 in May. Though we each grieve in our own way, we talk about Ana more. We accept that there is more silence in the house. We have discovered new ways to connect and I have personally begun to enjoy my solitude again.

Sometimes it still feels like we’re a family of four. We bring Ana into our lives in new, unexpected ways. Emily writes songs about her sister. She’s learning to play Ana’s old guitar. She’s begun collecting crystals and stones, a favourite hobby of Ana’s. My husband and I visit Ana’s favourite places on her birthday and holidays and on the day she died. He listens to the music that Ana loved. I write about her.

I take long walks on quiet trails and talk to her, pointing out tulip trees and downy woodpeckers. A few years ago, I started a Day of the Dead ritual for Ana. I set up an altar for her and adorn it with stones, candles, and flowers. I showed it to Emily this past November, explaining that it was difficult to find fresh marigolds – the traditional flower used for Day of the Dead altars.

This past Mother’s Day, my husband and daughter gave me some marigold seedlings to plant in our flower garden. Emily adores the garden. She waters it every day. She said she wants to make her own altar for Ana in November. These altars will be separate, but we will decorate them with the marigolds we grew together.

What The Loss Of A Child Does to Parents, Psychologically And Biologically

Though parents mourning the death of a child experience classic psychological, biological, and social grief responses, there are unique challenges.

The loss of a child may be the worst trauma a human being can experience. Though it’s not a terribly common experience in the United States — about 10,000 children between the ages of 1 and 14 died in 2018 — the horrific potential for losing a child looms large. And although reassuring, the numbers also make plain why the death of a child brings so much grief, and why it’s so feared, so painful, and so stigmatized.

“The death of a child is considered the single worst stressor a person can go through,” says Deborah Carr, Ph.D. , chair of the sociology department at Boston University. “Parents, and fathers specifically, feel responsible for the child’s well-being. So when they lose a child, they’re not just losing a person they loved. They’re also losing the years of promise they had looked forward to.”

Although parents mourning the loss of a child are, in many ways, experiencing classic grief responses — the usual battery of psychological, biological, and social repercussions — there are many unique challenges. The trauma is often more intense, the memories and hopes harder to let go of. As such, the mourning process is longer, and the potential for recurring or near-constant trauma is far greater.

“The death of a child brings with it a range of different and ongoing challenges for the individual and the family. Everyday questions such as ‘How many kids do you have?’ can trigger intense distress,” says Fiona MacCullum, Ph.D. , a clinical psychology professor at the University of Queensland in Australia. “Some people do find ways of living with the loss. Others struggle to find meaning in life.”

Biological Impacts: How the Death of a Child Changes a Parent’s Body

In 2018, Frank Infurna, Ph.D. and colleagues examined the general health and physical functioning of 461 parents who had lost children over the course of 13 years. “We did see some decline, followed by a general bounce-back, or recovery, over time,” says Infurna, who studies resilience to major stressors at Arizona State University. Physical functioning was focused on one’s ability to complete various everyday tasks, and “we didn’t see much change in this,” Infurna says. But when he reviewed bereaved parents’ self-reports — whether they felt they got sick often, or whether they expected their health to improve or decline — he found poorer perceptions of health.

As with all major grief responses, the trauma of losing a child can kick off physical symptoms, including stomach pains, muscle cramps, headaches, and even irritable bowel syndrome. A handful of studies have found more tenuous links between unresolved grief and immune disorders, cancer, and long-term genetic changes at the cellular level.

One surprising impact, often seen among parents mourning the loss of a child, is known as the broken-heart syndrome — a condition that presents oddly like a textbook heart attack. Symptoms include “crushing chest, pain, ST-segment elevation on electrocardiography, and elevated cardiac enzyme markers on lab results,” Fuller says, citing her previously written work on the subject . “As a reaction to emotional or physical stress, the body’s natural response is to release catecholamines, also known as stress hormones, that temporarily stun the heart muscle.”

Chronic stress can even impact how the brain functions, as long-term exposure to the stress hormone cortisol has been linked to the death of brain cells . And in a cruel twist of neurobiology, the regions of the brain responsible for grief processing , such as the posterior cingulate cortex, frontal cortex, and cerebellum, are also involved in regulating appetite and sleep. This may explain why grieving parents develop eating and sleeping disorders in the aftermath of the loss.

“There are many, many studies that have looked at the ongoing health effects of high levels of chronic stress,” says Gail Saltz, M.D. , a psychiatrist at the NY Presbyterian Hospital Weill-Cornell School of Medicine. “And when you look at lists of stressful life events, this is at the top.”

Psychological Impacts: How the Trauma of Losing a Child Harms the Psyche

The impacts of this tragedy are not solely biological. Interestingly, however, very few studies have delved into the nightmare of the death of a child. Most of the research on the psychological response to death focuses on the loss of a spouse or a parent. Presumably, this is in part because of the difficulty of finding subjects for study and also in the potential difficulty of recruiting participants in anything longitudinal.

“While there have been significant advances in our scientific understanding of grief, we have a long way to go,” MacCullum says.

That’s not to say we are without literature. One 2015 study of 2,512 bereaved adults (many of whom were mourning the loss of a child) found little or no evidence of depression in 68% of those surveyed shortly after the tragedy. About 11% initially suffered from depression but improved; roughly 7% had symptoms of depression before the loss, which continued unabated. For 13% of the bereaved, chronic grief and clinical depression kicked in only after their lives were turned upside-down. (If those numbers seem low, it’s worth remembering that it is entirely possible to be deeply sad without being depressed.)

Unfortunately, the research suggests that psychological damage was done by a child’s death often does not heal over time. A 2008 study found that even 18 years after losing a child, bereaved parents reported “more depressive symptoms, poorer well-being, and more health problems and were more likely to have experienced a depressive episode and marital disruption.” While some parents did improve, “recovery from grief…was unrelated to the amount of time since the death.”

“The first year after losing a younger child, a parent is at an increased risk for suicide and everything from major depression to complicated grief,” Saltz says. Complicated grief differs from expected, normal grief, in that “there are more intense symptoms, alternating with seemingly no symptoms — a numbness — which potentially impairs their ability to function.”

“A parent who grieves without any type of serious complications, such as suicidal thoughts or self-harm behaviors, would be the best-case scenario,” says Kirsten Fuller, M.D. , a physician and clinical writer for the Center of Discovery treatment centers. “Worst-case scenarios would be experiencing suicidal tendencies, psychosis, or developing a mental health disorder or an eating disorder.”

Predictors: How Age of the Child and Other Factors Impact Grieving Parents

A handful of studies have tried to pinpoint key factors that influence how well parents adjust in the aftermath of losing a child. One 2005 study found that the child’s age, the cause of death, and the number of remaining children were strongly linked to the levels of grief displayed by parents, while depression was linked to gender, religious affiliation, and whether the bereaved sought professional help. Subsequent studies have uncovered other predictors of lower grief responses: a strong sense of purpose in life and having had the opportunity to say goodbye .

“It depends on the psychological makeup of the parent, whether they have a history of mental illness, what coping skills, and what social supports they have,” Saltz says. Outside factors can play a role, too. Suicide is often more difficult, but a terminal disease can present recurring traumas over a long period of time.

Saltz also suspects that gender may be part of the puzzle. “This will undoubtedly shift, but historically mothers have been the primary caretakers and more likely to have their identities wrapped up in being mothers,” he explains, adding that this may result in stronger responses among women who lose their children.

One of the most salient predictors of trauma is the age of the child. Miscarriages and stillbirths are devastating and made worse by the fact that the loss is often diminished by the public perception that a fetus is not a fully-formed child. But “is it as devastating as the death of a child who has been alive for many years? Not to diminish this experience, but I think not,” Carr says.

Once a child is born, however, the script flips. Older adults who outlive their children generally have an easier time coping than parents who lose very young children. “The age of the child is really important because it speaks to promise,” Carr says. When a young child dies, that promise dies with them: “the graduation, the grandbabies, the marriages — that’s lost, too.”

Nonetheless, even older adults may suffer intensely after the death of an adult child. “You can meet someone who is 75 who loses a 50-year-old child, and it’s still devastating,” Carr says. “There’s this belief in the natural order. A parent should die first. So even though age matters, older parents still are quite bereft. They’re just losing less of that long-term promise.”

Social Impacts: How the Loss of a Child Strengthens (Or Ruins) Families

Major life stressors naturally take a toll on marriages. But divorce in the aftermath of a child’s death is not inevitable. “It’s really important to underscore that the death of a child is not going to ruin a marriage,” Carr says. “It generally makes a troubled marriage worse, and a strong marriage better.” When dealing with illness or addiction, spouses who disagreed over the best course of treatment are at particularly high risk. “If one spouse blames the other, or feels the other did something to hasten the death, that’s almost something that cannot be recovered from.”

There are also factors, beyond the couple’s control, which may sour or save the marriage. “Grief, trauma, and depression impact one’s ability to participate in all meaningful relationships,” Saltz says. “But I have seen couples where the opposite is the case. They become closer, they support each other. This is the only person who can really understand how you feel.”

Mothers and fathers who lose a child often must also contend with surviving siblings. Figuring out how to parent after losing a child is a unique challenge. Here, too, experts agree that the outcomes for both the surviving children and parents largely depend on the state of the relationship before the trauma. Death can bring a family together or tear it apart.

When dealing with terminally ill children, one particular risk is that other siblings may feel neglected, or find too many responsibilities foisted upon them while the parents shift their focus solely to the suffering child. A sick kid “is going to consistently get more attention, because they have to,” Carr says. “Sometimes the other children’s needs aren’t met, or they are treated like little adults, given more chores to do, or expected to provide emotional support to the parents.”

“That can be really troubling for them. Or it can be empowering, but difficult.”

Coping: How to Seek Comfort After the Death of a Child

After a child dies, those who are left behind may experience depression, biological and neurological changes, and a destabilization of the family and marriage. “If you’re in this situation, and it is impairing your ability to function, you need to seek treatment,” Saltz says. “Parents who fall into major depression will be unable to parent other children or be in a marriage. Psychotherapy can be helpful and medication can too, at least in the short run.”

The best thing that friends and loved ones of bereaved parents can do is be present, available, and supportive. If the bereaved speak of suicide, take them to an emergency room; if the situation is less dire, but the grief does not seem to abate over time, help them make an appointment to speak with a professional or attend a self-help group with other bereaved parents. Because even the most sensitive souls are seldom equipped to help parents cope with a loss of this magnitude — and no matter how hard you try, you’re unlikely to really understand.

That’s where a self-help group’s value really shines through. “The one thing that people who have lost a child hate hearing from others is ‘I know what you’re going through,’” Carr says. “They cannot possibly know.”

This article was originally published on Jan. 28, 2019

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Living Through the Grief of Losing a Child

Child loss causes despair and loneliness, but don’t be afraid to reach out to those who experience it.

Jackie Duda,

I’m staring at a picture of our youngest daughter’s college graduation in May. Our smiling 22-year-old graduate, Alexis, is in the middle holding her flowers and her cap, flanked by her 33-year-old brother, Joe, her 26-year-old sister, Elise, her dad and me.

Someone is missing: our 39-year-old daughter, Nicole, and what would most likely be members of her own family. We lost Nicole 17 years ago when she was 22 to an accidental overdose after a party at the beach. In 17 years, we’ve pushed on, but it hasn’t been easy, and there are times when I, at age 60, feel like I’ve been swept back in time to that dreadful rainy early October day.

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Bringing grief into the open

Last year, on National Grief Awareness Day, Aug. 30, the late Lisa Marie Presley published a heartrending essay in People about her grief after the death of her son Benjamin. I immediately connected with her despair and loneliness.

Presley was right, we need to talk about grief . Especially child loss. We’re all about the mental health crisis until it involves the death of a child. Following the immediate aftermath, once the dust settles, friends and family will go about their lives and grow distant, as if we’re some maladjusted harbinger of death. It’s only when you discover another parent who has had the misfortune to join this dystopian club of wounded souls that you feel safe to talk and get real about your emotions after years of being on mute.

“It can be overwhelming when someone thinks about a person losing their child,” says Margaret Albert, a counselor with Duke Hospice Bereavement Services in Durham, North Carolina. But the more we talk about it and write about it, she says, the more it becomes a part of the conversation. “People are so scared of this, of losing a child, and they should be, it’s a natural fear,” Albert says. But we need to be more open about it.

An overwhelming loss

I’ve experienced a lot of death in my lifetime: grandparents, parents, aunts, uncles and cousins. This is different. The loss of a child rips out your heart and stomps on your dreams.

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“We expect our parents and grandparents to pass before us, it’s the natural order of things,” Albert says. “When someone loses a child, it’s like going against nature, we lose our assumptions about how life will operate.”

Losing my daughter was like a nuclear bomb going off and shredding us, sending our family off in scattered, confusing directions. It happens whether the death is sudden or expected after a long illness. I hunkered down in self-destruct mode for at least two years until I snapped out of it to be more present for my other three children, whom I was dreadfully worried about (true confession — still am) and wanted to place in a protective snow globe so no harm would ever come to them. I became a helicopter parent, times 10. And I’m still working on that.

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“It doesn’t matter the age of the child, it’s a very deep grief that you carry with you, and it’s tied directly to the hopes you had for that child,” Albert says.

Remembering her joy

My hopes were that Nicole, a skillful ballet and tap dancer, would enjoy a dance career. My heart aches when I watch the Rockettes perform in the Macy’s Thanksgiving Day Parade. She loved ’NSync, Mariah Carey, Eminem, Spice Girls and TLC. She and her best friend Meagan were always dressing up and singing Spice Girls songs at the top of their lungs. I summon a rebellious Eminem song and work out in the gym, not just to get some frustration out but to remember her love for the artist. When I’m wistful, it’s “MMMBop” by Hanson, one of her favorites. Justin Timberlake songs bring a smile to my face; she was crazy about him.

I dread the unwelcome but probably well-meaning conversation starters I get from strangers. “So, do you have children? How many?” Um, four, but one died. “Why aren’t you a grandparent by now?” Really? In this day and age when couples delay starting a family, 60 years old should automatically signal grandparent? Or feverishly giddy grandparents who nudge me to nudge my kids. “There’s nothing better in this world than being a grandparent.” So is my life worthless because I’m not a grandparent? I never broach this subject matter with others. “Grieving parents view life through the lens of loss,” Albert explains. People don’t realize how insensitive and invasive those questions can be. Albert advises having a ready-made statement prepared so you’re not caught off guard. “It takes the stress out of the situation, and you control the conversation that way,” she says.

Grief is messy but natural

Support for grieving parents.

Compassionate Friends  is a national nonprofit support network for grieving parents with chapters around the country. “More counselors are being certified through ADEC, the  Association for Death Education and Counseling . The resources are growing,” Albert says. “Therapists are becoming skilled to work with grief,” which vastly differs from counseling for mental illness.

I deeply appreciate the empathy bestowed by others, texted memories shared with Meagan, her mother carrying a bridesmaid bouquet for Nicole when she got married, or the blue charm bracelet Meagan gave me when she had her firstborn. It’s one thing for grieving parents to remember, but it takes it to a whole other level when others do. Or when they allow us to vent and be real.

“It’s comforting to be with people who allow you to be authentic and are not afraid or judgmental of your reactions and emotions,” Albert explains. Sometimes you need to feel sad and angry. It’s emotional, physical, spiritual — grief is every part of who we are as human beings. No two people grieve the same. Many find a tangible way to mark the significance of their child’s life, which helps us to continue those bonds and remember them, Albert says. I will launch a college scholarship on Nicole’s 40th birthday for fine arts and dance majors who have a parent or parents with disabilities. My husband and I are both disabled. The scholarship will enable another child from a struggling family to go further in life and pursue their passion for the arts.

Grief isn’t linear. It doesn’t progress neatly in sequential order through stages. Grief is messy, and it evolves. There are times I can tiptoe at the water’s edge and move through life as though everything is normal, and there are times when that unexpected wave of grief crests and crashes over me, dragging me into the surf to drown me. “It’s more like a grief wheel that goes forward and backward, it’s very fluid,” Albert says. 

Bottom line: Grief is natural, it’s a part of living. “It’s like a mirror. Grief is a direct reflection of love,” Albert says. Child loss is scary and goes beyond what most of us are equipped to cope with. Don’t be afraid to reach out and support those who’ve lost a child, even if it’s been decades. And please let them be real.

Jackie Duda is a health and travel writer in Frederick, Maryland. She’s also a mental health and disability advocate. She’s written for  The Washington Post ,  Woman’s Day ,  Costco Connection  and other publications.

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Grieving the Loss of a Child: The Five Stage Myth

Numbness, not denial, is often a parent's first feeling..

Posted June 4, 2015 | Reviewed by Ekua Hagan

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When we think of death, dying, and grief, no one therapist has had the impact and staying power as that of Elisabeth Kübler-Ross. Her five-stage model, presented in her classic, On Death and Dying , has been an influential voice on the topic for decades.

But in the last few years, work in the field has put the universality of that model in question. Some, such as Russell Friedman, therapist and director of the Grief Recovery Institute, argue that with many kinds of loss, people don’t grieve in five stages at all.

Originally intended to describe experiential stages of people facing their own impending death, mental health providers, as well as school counselors and educators, seem to have generalized the Kübler-Ross model to a multitude of situations — some applicable, some not so much.

In a recent interview, The Trauma & Mental Health Report spoke with Katherine, who described her personal reactions throughout the first year after the loss of her son, Ben, who was killed in a car accident 10 days shy of his twenty-first birthday. Like many coping with loss, her grief did not follow the patterns described by Kübler-Ross, it was much less predictable. Said Katherine:

I decided to see a social worker a few months after Ben died. We talked about grief after loss and the counselor recited Elisabeth Kübler-Ross’s five-stage grief model: denial , anger , bargaining, depression , and acceptance. This didn’t describe how I was feeling at all… During the first few months after the accident, the only way I can describe how I was feeling is that there was no ‘feeling.’ It was as if my heart was ripped out and stomped on. There was nothing left, but a complete numbness.

According to clinical psychologists Jennifer Buckle and Stephen Fleming, co-authors of Parenting after the Death of a Child: A Practitioner’s Guide , this feeling of numbness described by Katherine is often the first grieving experience reported by bereaved parents. Coupled with this sense of numbness, bereaved parents, especially mothers, feel vulnerable and unprotected in what is now considered to be an unfair world.

Eventually, the numbness subsides and the unsettling and preoccupying images of the child’s death take over. Almost all bereaved parents make reference to traumatic memories. Even parents who were not present when their child died describe the trauma experienced as if they were physically there and directly involved. As Katherine described:

The nightmares just didn’t want to go away. I would have the same reoccurring dream. I would see a red traffic light and hear cars crashing, and then I would wake up in panic. It came to the point where I was anxious every night before bed; I knew what was coming, another nightmare or barely any sleep. I can’t recall having a peaceful sleep the first few months.

Katherine’s nightmares became less frequent over time but still crept up on occasion. In Buckle and Fleming’s view, the impact of trauma can lessen for some over time; but for others, the images and violent memories may vividly persist.

Grieving parents also fight with recurring flashes of past memories they shared with their deceased child. After a child’s death, most parents feel as if a part of their life has been erased, this is a very frightening feeling. To cope, some parents will resort to avoiding places they associate with the deceased child. This was true for Katherine:

It took me over a year to set foot in another hockey arena. Ben was coming home from hockey the night of the accident… just the idea of going into an arena was painful. All the memories… watching him learn how to skate, going to hockey practices, and going with the family to hockey tournaments. I was trying to avoid that pain.

Bereaved parents put a lot of energy into avoiding feelings, memories, and places that remind them of the child. At times they also ruminate, thinking about what could or should have been. Noted Katherine:

Sometimes I can’t help it; something will remind me of Ben, and I immediately think about what things would be like now if he was still around. It gets really hard at family get-togethers and around birthdays and holidays. Not having him there… a parent can never get used to that.

Psychology professor Susan Nolen-Hoecksema, on faculty at Yale University, reports that women tend to ruminate more if they were battling depression before their child’s death, in comparison to women who were not. Elderly bereaved parents also tend to ruminate more than younger bereaved parents. With more free time on their hands, there is occasion to think about what might have been.

So why do some parents have an easier time adjusting after the loss of a child, compared to others?

To move forward, grief counselors tend to agree that parents need to experience their own pain, keep the deceased child’s memory alive, and accept the loss, a notion that aligns well with the Kübler-Ross “acceptance” stage. Parents who continue to avoid don’t adjust so well.

The ability to learn from bereavement helps parents take responsibility for creating a new purposeful life. Irvin Yalom, author of Existential Psychotherapy posits that when parents find it too painful to learn from their bereavement experience, they are unwilling to “feel true feelings guiltlessly.” For parents to adjust well, realising that it’s okay to be happy again is crucial.

The loss of a child is likely the most difficult thing a parent can endure. Perhaps it is fitting that a life experience so profound would turn out to be complex and hard to fit into predictable stages.

By Tessie Mastorakos, Contributing Writer, and Chief Editor Robert T. Muller of The Trauma and Mental Health Report .

Copyright Robert T. Muller

Robert T. Muller, Ph.D. , is a professor of psychology at York University, and the author of the book Trauma and the Avoidant Client .

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What to Know About Grieving the Death of a Child

Children are supposed to outlive their parents. That’s what everyone says. However, life rarely does what it is “supposed to,” and sometimes, parents find themselves in the heartbreaking, gut-wrenching position of losing and grieving for a child.

Grieving the Loss of a Child

Grief after losing a child can be a long and difficult process.

You may have heard people talk about the stages of grief . The truth is, while these stages are common grief reactions, everyone grieves differently, especially when grieving for a child.

You may experience only some of these reactions, may experience them “out of order,” or experience each stage for a different amount of time. You may also experience these stages more than once.

The five stages of grief typically include denial, anger, bargaining, depression, and acceptance.

Denial . Denial is often, but not always, the initial stage of grief. Denial is your brain’s way of protecting you from overwhelming or shocking emotions. It may involve denying that the death happened or simply denying how you’re feeling.

Internally, denial may feel like:

• “Shutting down”

Outwardly, denial may look to others like:

• Procrastination
• Forgetfulness
• Distraction
• Excessive business
• Telling others, “I’m fine”

Anger . Anger can be directed toward many people or things: yourself, God, doctors, or whoever else may be responsible (from your perspective) for the death of your child. In some cases, this anger may truly be justified, but outbursts will still only serve to push away your support system.

Anger in grief may feel like: 

• Frustration
• Embarrassment
• A lack of control

To others, your anger may be seen as:

• Irritability
• Passive-aggression
• Eagerness to fight
• Increased drug or alcohol use

During this stage, some of the best ways to process these intense feelings can include physical activity, connecting with others, and therapy.

Bargaining . Bargaining isn’t always about making a deal with a deity. Instead, bargaining often strives to get to the root cause of the tragedy you are experiencing. It may involve asking, “What did we do to deserve this?” It may also involve intense feelings of guilt as you search for a cause.

Internally, bargaining may feel like:

• Anxiety/fear

To others, bargaining may be seen as:

• Judgment toward yourself and others
• Thinking or saying “I should have…” or “If only I had…”
• Assuming the worst about the future
• Ruminating on the past or what the future may bring
• Perfectionism
• Overthinking and anxiety

Depression . Depression is the stage when the full gravity of the situation truly takes hold, along with feelings of loss, desperation, and sadness.

Your depression may feel like:

• Hopelessness
• Disappointment

Common signs of depression in grief include:

• Changes in sleep, including insomnia or oversleeping
• Changes in appetite, including binge eating or loss of appetite
• Lack of interest in socialization
• Lack of motivation
• Increased use of drugs or alcohol

Acceptance . Acceptance is the stage in which your mind has finally been able to process your loss and start to move forward. You may still feel other emotions, but this is the stage where you’ve found some sort of resolution.

Feelings in the acceptance stage may include:

• Self-compassion

Signs of acceptance may include:

• Finding healthy coping mechanisms
• Displaying mindful behaviors
• Being present and engaging with reality
• Possessing the ability to be vulnerable
• Engaging in honest communication without becoming defensive

Acceptance does not mean that you don’t feel emotions. It simply means that you are no longer fighting or avoiding reality. 

Other common reactions to grief include:

• Loneliness or isolation, even if you have a strong support system
• Yearning for your child, which may result in restlessness and frustration
• Physical ailments , which can be brought on by depression, stress, and issues like insomnia or not eating properly
• Marital stress, which can be caused by becoming detached or too attached to one another

How to Deal With the Death of a Child

There is no one way to deal with grief. The loss of a child is often particularly painful, and there is no predicting what your grieving process will look like. That being said, some ways of dealing with grief are healthier than others.

Some of the more unhealthy ways of coping with grief include:

• Heavy drinking or use of recreational drugs
• Drinking and driving
• Compulsive spending
• Risky sexual behavior
• Becoming controlling or abusive
• Becoming a victim of abuse
• Self-harm and suicidal ideation

The healthiest ways of coping often involve self-kindness and a support system. They include:

• Allowing yourself to process all your feelings,  even if those feelings are conflicting or you feel like you “shouldn’t” be feeling something
• Journaling to help you process those feelings
• Not setting a time frame on your grief or rushing through the grieving process
• Finding a way to honor the deceased, such as creating a tradition of celebrating their life on their birthday
• Utilizing your support system

Your support system may include family, friends, or your community. It also may include a religious group or a grief support group.

If these healthy coping mechanisms aren’t working for you and you’re finding yourself slipping into unhealthy coping patterns, it may be wise to consider grief therapy. This could include individual therapy, family therapy, group therapy, or some combination of the three. Choose a licensed therapist with a specialty in grief counseling.

Life After Losing a Child

There’s a saying that “time heals all wounds,” but that isn’t quite true with grief. No matter how well you’ve “accepted” your loss, you will always be grieving the loss of a child. You will still feel pangs of sadness and loss and despair from time to time.

Time will, however, soothe your grief. It won’t feel as raw once you’ve begun to heal. You’ll fall into a new routine. Your life will move on, and the memory of your child will always hold a special place in your heart.

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Essays About Grief: Top 5 Examples Plus 7 Prompts

Discover our guide with helpful examples of essays about grief and inspiring writing prompts to help you begin writing about this sensitive and emotional topic.

Grief is a human being’s normal but intense and overwhelming emotional response to painful events like the death of a family or friend, disasters, and other traumatic incidents. To cope, we go through five stages of grief : denial, anger, bargaining, depression, and acceptance. 

Writing about grief can trigger strong emotions. However, many also find acknowledging the subject helpful in processing their feelings. Grief is a sensitive topic that covers morals and beliefs. It requires empathy and awareness. 

5 Essay Examples

• 1. Death And Stages Of Grief  by Anonymous on IvyPanda.Com

2. Loss And Grief by Anonymous on GradesFixer.Com

3. coping with grief by writer faith, 4. the main stages of overcoming grief by anonymous on ivypanda.com, 5. stages of grief and people’s perception of grief based on age by anonymous on gradesfixer.com, 1. what is grief, 2. the best way to handle grief, 3. grief and depression, 4. when grief becomes dangerous, 5. books about grief, 6. a personal experience with grief, 7. art inspired by grief, 1. death and stages of grief   by anonymous on ivypanda.com.

“… Ignoring various philosophical and religious views, death can practically be interpreted as a complete cessation of the body’s vital functions. When faced with the death of loved ones, as well as with other traumatic events, a person usually experiences grief.”

This essay expounds on the five stages of grief defined by Elisabeth Kübler-Ross and what people go through in each phase. The author uses the story of the philosopher Nicholas Wolterstorff who lost his son Eric in an accident. The piece further discusses how Nicholas went through each stage, including believing in God’s promise that his son would have eternal life in heaven. The writer believes that grief doesn’t usually follow an order and sometimes appears random. Such as in Wolterstorff’s situation, where he experienced depression before the bargaining phase.

Looking for more? Check out these essays about losing a loved one .

“The loss of a loved one will always be a painful personal journey, and a coping experience that no one is ready for or can prepare for till it happens. The after effect or grief is always personal for everyone that loses a loved one.”

The author presents different poems that reflect her loss and sadness for her mother’s passing. She connects to the poem “ The Courage That My Mother Had ” and values the things her mother left behind. There are times when grieving individuals think they are healed, but one event can bring back the pain in an instant. The writer believes that grief doesn’t end after the acceptance phase. It’s because whenever we think of our loved ones who have already passed away and relive the memories we had of them, we always wish they were still with us.

“Grief is an emotion that unfortunately, we all come to experience at some time or another. However, that terrible feeling can open the door to acceptance and appreciation. Mourning and reflecting upon a tragic event can cause one to look at an issue through a different perspective, and maybe even help them to accept it.”

Faith’s essay demonstrates how tragedies can cause people to unite and support each other. Processing grief teaches the bereaved to be stronger and appreciate the people who offer comfort and encouragement. It also teaches us not to take anything for granted by cherishing even the simple things in life. Faith sees grief and terrible events as negative experiences, but they can lead to positive results that steer people to be grateful.

“Grief is one of the most complicated processes which is to be combated. Some people are able to cope with grief individually, others need assistance. There are even cases when people need professional help to cope with grief.”

The essay contains various passages that discuss the five stages of grief. The author believes denial is the root of grief in all phases. The author supposes that people can overcome grief through several methods, such as reading the bible, getting support from family and relatives, accepting the loss, and learning to live with it.

“The intensity and duration of grief may depend on many factors, such as the personality of the individual, the relationship to the deceased, and the circumstances of the death. Unexpected, sudden, or accidental death can be extremely shocking. Death of one’s child at any age is difficult to accept.”

The essay discusses how various factors, such as relationship, age, and cause of death, affect grief’s intensity and duration. It mentions that grief can last years and that losing a child at any age is the most challenging case to accept. 

The author presents various scenarios showing how these elements influence the state of grieving. For example, a person grieving the loss of their spouse may hear their voice and feel their presence in the room. 

7 Prompts for Essays About Grief

Simply defining grief in your essay won’t make it stand out among the rest. To make your piece enjoyable, describe grief in a way that probes your readers’ feelings and imagination. You can personify grief or compare it to another familiar feeling to give you an idea. For example, you can say grief is a stranger persistently reaching out to you to make you remember hurtful memories.  

We deal with grief in our own way; some take it in their stride, while some become a wreck. Use this prompt to enumerate excellent ways to deal with this heavy emotion. Ask yourself what you’ll do if you can’t get over grief and research thoroughly. Pick the most effective methods of overcoming grief and support your findings with relevant data.

There are many effects of grief, and depression is one of the most significant. Loneliness can negatively affect how a person thinks and acts, but grief makes depression worse. Write an essay with a series of situations that show how grief can lead to depression and ways to prevent it.

Here are some essays about depression to give you an idea of how to write this topic.

Grieving is a normal reaction to losing a loved one but it can turn dangerous when the individual grieving stops normally functioning for at least a year after the death. For this prompt, include reasons people break and let grief consume them, such as extreme depression and fatigue. Add signs and symptoms that can help others detect when someone’s grief becomes unsafe for the individual and the people around them.

In your essay, recommend books, documentaries, or movies detailing grief. These books can be accounts of those who already went through the grieving process and are sharing their experiences. For example, Every Word You Cannot Say by Iain S. Thomas is a delicate book that guides readers into acknowledging their feelings. Detail why these books are helpful for people grieving and recommend at least three books or other forms of media that the reader can use to cope.

Share an encounter you had with grief. Describe what you felt and narrate how you grappled with the situation. For instance, if you have ever helped someone suffering from grief, explain the step-by-step method you used and why you decided to help that person. Even if you don’t have any personal experience with grief, you can interview someone who has gone through it. Remember that it’s a delicate subject, so your questions should be diplomatic.

There are many mediums people use to process their strong feelings. One is through creating art. When writing your essay, list arts made by grief or inspired by grief. Add comments on how the artist managed to relay the loss and grief through the art. You can also share your favorite art you think best depicts grief. Like Vincent Van Gogh’s 1890 painting called “ Sorrowing Old Man .”Learn about transition words for essays to improve your work.

A Chance to Say Goodbye: Reflections on Losing a Parent

A Chance to Say Goodbye:

Reflections on losing a parent.

Available on Kindle and paperback on  Amazon ,  Barnes and Noble and Indie Bound .

Throughout the years, Lisa and her dad had a tenuous relationship. In her youth, she was disappointed and angered by his behavior, distancing herself from him and blaming him for the sudden end to their intact comfortable family life. As a young adult and after her father’s sudden heart attack, Lisa was given a second chance to heal their relationship. Over the next three decades, they became closer, enjoying time together, including travel. When her dad entered his eighties, and while still raising her own children, Lisa found herself unprepared for his steady health decline. Suddenly, she was thrust into the role of overseeing his care as he began to experience increasing disability and the beginnings of dementia.

2017 Human Relations Indie Book Awards

Gold Winner in “Aging Family” & Honorable Mention in “Life Journey”

A Chance to Say Goodbye gives rise to reflections about what is important in living and dying.

Not having prepared for or anticipated such a role, Lisa floundered as she attempted to address his ever-changing situation. The closeness and healing they had achieved was challenged as her father resisted conversations about his failing health and his care, exacerbated by a western medical system that fell short to prepare them for the end of his life.

A moving tribute to a remarkable man and a daughter’s experience of losing her dad, A Chance to Say Goodbye gives rise to reflections about what is important in living and dying.

2017 Living Now Book Awards

 Bronze Winner in “Mature Living/Aging” 

Available Online at these retailers

2017 National Indie Excellence Awards

Finalist in “Death and Dying” 

Editorial Reviews

Starred Review  “Part tribute, part memoir, part guide, A Chance to Say Goodbye succeeds on all counts, with lyrical writing and thorough research… In recounting her father’s story, Shultz enables readers to share in her loss. And she offers a wealth of practical advice on everything from writing an obituary to clearing out a house… Thought provoking and absorbing, A Chance to Say Goodbye has much to offer readers willing to confront the challenging subject of end-of-life.”  — BlueInk Review

This book can change our entire society for the better and allow everyone ‘a chance to say goodbye’ with those we love.” — Karen M. Wyatt MD, author of What Really Matters: 7 Lessons for Living from the Stories of the Dying, wrote the foreword to A Chance to Say Goodbye .

2017 Best Book Awards

Finalist in “Health: Aging/50+”

Featured in

• June 2017, Family Caregiver Support blog I wrote describing the reasons I wrote the book.
• June 2017, A Chance to Say Goodbye was featured on Book of the Week on No Shelf Required .
• June 2018, HomeWatch Caregivers featured a Q & A about caregiving.

More Praise for a Chance to Say Goodbye

“This personal narrative of a universal experience is both touching and useful. Lisa gently guides the way through navigating the death of a parent, an experience many will face but few will be prepared for. Her honesty on a difficult topic is refreshing. After reading this book, I feel more confident in facing what lies ahead.” Gwen Van Velsor, Author of Follow That Arrow

“A Chance to Say Goodbye is a book anyone who has aging parents needs to read. The experience of parenting a parent through medical, financial, and even the issues of daily living can be so frustrating and isolating. Read Lisa’s book and you’ll know you’re not alone. You’ll gain key understanding for the time when you are about to enter this phase with a parent. Insightful and beautifully written!” Gayla Wick, Author of The Art of Attracting Authentic Love

“Lisa shares a touching life experience in A Chance to Say Goodbye: Reflections on Losing a Parent. Part memoir, part historical documentary, part tutorial on aging and dying, this wonderful work does not leave anything out in preparing for the journey of losing a loved one. Her thorough research gives the reader many resources to consider and her well-chosen quotes comfort, inspire and challenge one’s spirit for the time they begin this difficult journey. Death is a natural part of Life’s progression, and Lisa helps the reader navigate this season with much tenderness and honesty.” Connie Pshigoda Author of The Wise Woman’s Almanac: A Seasonal Guide with Recipes for New Beginnings that Never Go Out of Season

“This book is deeply personal and insightful. You’re sure to gain valuable knowledge as well as important tools and resources from Lisa’s exceptional book. She offers honest emotions from her experience. I also enjoyed getting to “know” her father as a vibrant and healthy man, prior to his failing health. A must-read!” Kate Heartsong, Author of Deeply We Are One

“A Chance to Say Goodbye is a labor of love and a must-read. The author tells a heartwarming and heart-wrenching account of her relationship with her father. In today’s society, we avoid thinking of the later years in our relative’s lives. This book should remind all adult children with aging parents that they must prepare for their loved ones’ future as well as their own. Thank you, Lisa! “ Karen Owen-Lee Author of The Caring Code and The Caring Crisis, CEO and founder of Housing Options for Seniors, Inc.

“If you are in the sandwich generation, you need this book. Lisa Shultz’s honest, compassionate, and compelling exploration of her own reactions in assisting her dad to complete his life make the process of caring for and losing an aging parent unflinchingly real. The resources she discovered and shares will help you prepare to meet the inevitable challenges that arise when you assume similar responsibilities. Dr. Laurie Weiss Author of Letting It Go: Relieve Anxiety and Toxic Stress in Just a Few Minutes Using Only Words

“This is an outstanding book about Life, Death, and Caretaking. Beginning with a biography of her father, A Chance to Say Goodbye is not just a memoir, but rather sets the scene for her experiences and frustrations as her father’s caregiver at the end of his life. She gently explains her experience as daughter and supervisor of his final years. Finally, Lisa masterfully moves into ‘how to mode’ and gives a detailed blueprint of the steps each of us might follow to prevent the difficulties she experienced. A worthwhile book about a very difficult subject, it is beautifully written, interesting, and personal, moving the reader effortlessly though the frustrations of caretaking, dying, and death. After reading it, you will be grateful to Lisa Shultz for her insights on this sensitive subject.” Rhondda Hartman Award-Winning Author of Natural Childbirth Exercises for the Best Birth Ever and Natural Childbirth Exercise Essentials

“Full of resources and insights, A Chance to Say Goodbye is a helpful read for anyone navigating the journey with an aging loved one. The section on the caregiver’s own grieving process is just as helpful as how to talk to your loved one about their impending death.”  Jan Haas Author of Moving Mountains: One Woman’s Fight to Live Again

“With captivating transparency, Lisa Shultz shares fun memories, uncertainties, fears, emotions, and challenges of becoming the caregiver, watching her father slowly weaken. The insights and lessons learned will prove valuable to those being cared for as well as those involved with end-of-life matters on behalf of a loved one. The resources and questions Lisa includes will be helpful to anyone facing such decisions.”  Ted Dreier Author of Take Your Life Off Hold

“Lisa’s book is written with heartfelt openness, wisdom and thoughtfulness. She shares with us her life-long journey with her father and addresses her changing role and numerous challenges, truly bringing me a sense of peace regarding having been caretaker for my own father until his death several years ago. Lisa also gives important guidance for all of us in taking care of practical matters while we can.” L iz Sower

“Award-winning author, Lisa J. Shultz, writes a book for the times. She tackles subject matter that Baby Boomers will clearly identify. The subject of this book takes a look at the complicated relationship between father, and daughter. This because of a shared history, family relationships, and the thoughtfulness involved, when a daughter becomes, caregiver in-chief.

The story weaves family history, with the issues the caregiving child must face, to take care of a parent. What happens when the parent becomes, the child, and the child, becomes the parent? Well, Lisa, with her beautiful writing, artistry, answers the question, with detail, a heartfelt storyline, and the practical knowledge needed when you have to say Goodbye.

It is difficult to say goodbye to a parent, and in some ways, you never get over it, so this book is part self-exploration, and part a guide book to others. When the parent is gone, you are consumed by memory, by dreams, and by the practical aspects of cleaning out the house. Do you move on? Probably not. So if you are in a situation where you can identify with the subject matter, of family history, to caregiving to saying Goodbye, I highly recommend this book—“A Chance To Say Goodbye, by Lisa J. Shultz.” Rick Bava Author of In Search of the Baby Boomer Generation

Read additional reviews on Goodreads and  Amazon

Check out Best Books on End-of-Life Planning . 

Copyright © 2024 Lisa J. Shultz

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Grieving a Parent’s Death at a Young Age: A Loss That Lingers

Readers discuss how losing a parent changed their lives and continues to affect them.

To the Editor:

Re “ No Quick Fix for Childhood Grief ” (Op-Ed, Aug. 26):

I read Hope Edelman’s article on losing a parent at a young age with the clarity of recognition. I lost my father to suicide when I was 14. During and after that tumultuous time in my life, there was no place for me to grieve. On the day of his funeral only one person asked, “How are you?”

There was always silence around his death. I watched my mother fall apart and often be blamed for his suicide. I felt that I needed to take care of her and not the other way around. It was only this past June that I learned of incomplete mourning while reading William Styron’s “Darkness Visible.” No therapist ever asked me about grief and mourning.

My life’s narrative was indeed derailed and, as Anderson Cooper is quoted as saying of his father’s death, “ changed the trajectory of my life. I am a different person than I feel like I was meant to be.”

I lost my father in 1956. Sixty-three years later, I still dwell on the consequences of that loss.

Sandra Allik Cambridge, Mass.

My dad died 40 years ago this coming December, and while I was not a teenager at his death (I was 27 at the time), I still feel his loss daily.

The arc of my business life changed dramatically (my nearly lifelong dream of practicing law with my dad over almost as soon as it began), and I mourn that he never got the opportunity to be a grandfather to my children, for them to feel his warmth and his strength. But most of all I miss his companionship.

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The loss of a child, bereavement and the search for meaning: A systematic review of the most recent parental interventions

L. pelacho-rios.

MEB Lab (Mind, Emotion, and Behavior Research Laboratory), Catholic University of Valencia San Vicente Mártir, Valencia, Spain

G. Bernabe-Valero

Associated data.

The datasets generated during and/or analyzed during the current study are available from the corresponding author on reasonable request.

The loss of a child is considered one of the most tragic experiences that parents can go through. The present systematic review aims to compile the most recently published interventions in bereavement support for these parents, being particularly interested in those made from a meaning-centered approach. The search for the units of analysis was guided by the standards of the Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) Statement and was entered in Web of Science, Scopus and EBSCO, obtaining a total of 485 papers of which 21 have been included in this article. The results found are heterogeneous in terms of the type of intervention used and results, but they all seem to have something in common: the lack of research and reliable interventions that exist for this population. With this systematic review we intend to achieve a better understanding of these parents' needs and to highlight the enormous work that still remains ahead in order to make their bereavement experience a little less devastating.

Introduction

According to the United Nations International Children's Emergency Fund (UNICEF) at the present moment, a total of 15,000 children under the age of five die on a daily basis and an additional 60 million will die between now and 2030 (Aparicio., n. d). When you think of these figures in terms of the number of parents that will lose their children, it becomes clear the amount of parental bereavement our world is currently facing and will face in the future. However, it is important to keep in mind that all these grievers will not react to the loss in the same way, nor are all their grievances will be identical (Burke et al., 2014 ).

In fact, over the years, different types of bereavement have been developed across literature. An example of this is family bereavement, which is described as an adjustment period characterised by a range of emotions, behaviors and thoughts which enables both individual and family equilibrium to be restored after a loss (Porta et al., 2013 ). Even more specific is the concept of parental bereavement, which is conceptualised as a never-ending process in which parents experience a completely new reality (Denhup, 2017 ). This particular type of bereavement is composed of the following phases: a phase of shock and denial, a phase of acute distress and isolation and, finally, a reorganization phase (Porta et al., 2013 ).

However, between 10 and 34% of cases, grief is not experienced in a normative way and becomes pathological (Ballestín et al., 2007 ). This grief is defined as an intensification of specific symptoms that lead the person to engage in maladaptive behaviors that interfere with the ability to heal, resulting in the person becoming completely overwhelmed (Neimeyer & Ramírez, 2002 ). Even more, this pathological grief has also been predictive of insomnia, substance abuse, cardiovascular disease, social problems and suicide attempts (Burke et al., 2014 ).

Continuing, if this grief did not already have enough negative impacts on its sufferers, it has also been known to possess an addictive quality. This is explained in the paper published by Burke et al. ( 2014 ), claiming that, while the brains of people suffering from normative grief have a greater activation in their brains' pain pathways when seeing the photograph of a deceased relative, in the case of people suffering from complicated grief, the nucleus accumbens is the brain structure with the greatest activation when viewing this same picture. This is therefore worrying when remembering that this nucleus is the responsible for managing the reward system and addiction processes. Something which confers it with the capacity of developing an addiction to this type of suffering among its mourners, making complicated grief even more threatening.

Many risk factors exist for the development of this type of grief, but we particularly highlight the fact of experiencing the loss of a child (Porta et al., 2013 ), being the caregiver of the deceased person and, finally, the cases where the intensity of attachment is high. This last risk factor receives special support from Neimeyer and Ramírez ( 2002 ), which point out that the severity of the emotional reaction to the loss is proportional to the existing affective relationship between the bereaved and the deceased.

It can be observed then, that all these risk factors point to parents who lose a child as a very suitable target to experience such an adverse reaction . This, parallel to the fact that in our current society we have been taught that everything can be understood from a logical point of view (Porta et al., 2013 ) and that the death of a child is inconceivable and impossible to integrate as it is unnatural, endows these losses with the capacity to be highly traumatic (Ballestín et al., 2007 ). The biological theory of grief further emphasises this by explaining that, in the course of evolution, irretrievable losses are not understood in a logical way and that our whole system is mobilised to re-establish the contact with the lost one. This primary instinct that leads us to believe that losses are reversible, despite the desire to be adaptive, can make the suffering experienced by parents at this time even more intense (Neimeyer & Ramírez, 2002 ).

In addition, as far as our Western society is concerned, it also contributes to suffering by among other things, harbouring a strong taboo on death, as it brutally clashes with a welfare state that seems to prevail above everything else. Thus, loss and its corresponding grieving process tend to be neglected, as they represent a rupture with this state of wellbeing that is so central in today's culture. It is not surprising, therefore, that bereaved people tend to feel misunderstood, isolated and inexperienced in dealing with their grief, something which can greatly exacerbate the repercussions of their loss. In fact, this lack of knowledge will lead them to use the strategies that our culture instils in us: those based on logic. However, although these are functional and suitable in our day-to-day lives, they are not able to relieve their anguish and pain, and, as mentioned above, may further aggravate them (Porta et al., 2013 ).

In fact, along with the loss of a spouse, the death of a child is considered by the Social Readjustment scales to be the most difficult experience that a person can go through (Ballestín et al., 2007 ). And not only this, Neimeyer and Ramírez ( 2002 ) claim that, from a physiological point of view, the loss of a loved one can be equivalent to the pain experienced by a severe wound or burn. Adding to this, it must be noticed that several studies have found that these parents tend to suffer serious health problems along with a higher mortality rate (Denhup, 2017 ). These notions, together with the fact that unresolved grief over the loss of a child can contribute to pathological relationships that extend over several generations and the existing knowledge that the degree of support perceived by the family is significantly related to better bereavement outcomes, makes it vitally important to provide these families with assistance (Neimeyer & Ramírez, 2002 ).

This is the reason why, taking into account all these factors and the psychological vulnerability that bereaved parents encounter, a number of specific therapies have been developed over the years for this population. Some examples are the cognitive-behavioral grief-targeted intervention, which is able to considerably reduce the negative effects of bereavement (Lichtenthal & Breitbart, 2015 ). Group therapy, which, in addition to being effective and reducing levels of depression (Burke et al., 2014 ), provides parents with crucial emotional support (Jordan & Litz, 2014 ). Family therapy, which holds that family members may grieve differently but also grieve together as a unit (Burke et al., 2014 ), and, finally, the most recently developed: internet based interventions (Jordan & Litz, 2014 ).

Nevertheless, at the time of this review, we are particularly interested and curious in one specific type of approach, being this meaning centered psychotherapy. As a fundamental basis, this therapy posits that human beings have a unique capacity to find meaning in even the hardest life experiences (Wong, 2010 ) and that grief is actually an existential crisis that, depending on how we deal with it, gives us the opportunity to grow and build a life worth living or, on the contrary, feeling an unresolvable void (Porta et al., 2013 ). This existentially oriented therapy, initially developed for chronic cancer patients by Breibart in the year 2000, was eventually adapted for the treatment of bereaved parents dealing with high levels of complicated grief (Lichtenthal & Breitbart, 2015 ). Although our work will mainly focus its attention on the application of this therapy for the treatment of bereavement, it is crucial to emphasise that beyond this, meaning centered psychotherapy has also been used to treat a variety of other conditions. Personality disorders is one such example, and to even be more specific, this therapy can be used for the obsessive, dependent and avoidant disorders. Adding to this, over the years, this approach has also given significant attention to addictions, sleep disorders, eating disorders, traumas, affective disorders and sometimes even psychosis. And, it has also been widely applied in oncology, disaster and family contexts (Ortiz, 2013 ).

Continuing, as Wong ( 2010 ) thoroughly expose in their work, this therapy possesses a multimodal nature, which can be appreciated in the fact that it has integrative, existential, relational, positively oriented, multicultural, narrative and psycho-educational characteristics. Broadly speaking, these authors state that when it is defined as integrative, it is mainly because, despite being based on logotherapy, it also includes other approaches such as the narrative therapy or the cognitive behavioral therapy. And not only this, it is also holistic in its way to approach patients, not focusing only on their condition and classifying them with any particular disorder, but understanding them as being the sum of all their selves. As mentioned above, these authors also confer a strong existential component to this therapy which provides patients with the necessary resources to make sense of their grief. It is said to be relational as it teaches how to cultivate positive and empathetic interpersonal relationships, but also when it holds and states that, as humans, we are relational beings with an intrinsic need to belong and therefore, need others. When Wong ( 2010 ) claim that it is positively oriented, they refer to the fact that it encourages patients to view themselves in an optimistic manner and to develop the belief that times will always get better, something that is also referred by them under the term of tragic optimism. Meaning centered psychotherapy sometimes also addresses problems such as discrimination, and this, among other features, is what makes it classify as multicultural. Following on, the authors also acknowledge that it represents a form of narrative therapy since it employs, for example, the use of legends to create awareness of the potential for change that we all possess inside us and use this to guide us towards our chosen future. Finally, the therapy is considered to be psycho educational as it enhances the ability to create meaning at the same time it equips patients with tools that will serve them throughout their lives in their daily functioning.

But, when we mention meaning, what are we really referring to? On what does the well-known concept of meaning in life consist? At this point it is necessary to mention that despite the name given to this therapy is meaning centered psychotherapy and that meaning is present during the entire therapeutic process, this therapy not only focuses on the problematic of meaning. It is also worth considering that, in addition to this, this approach recognises two different typologies of meaning. One in terms of the perspective taken in particular situations (situational meaning) and another in terms of the meaning that is discovered through the experiencing of these situations (Ortiz, 2013 ). Continuing with the attempt of describing this complex concept, Neimeyer ( 2015 ), bring further explanation stating that meaning in life is understood as the ability to reconstruct a world whose meaning has been shattered by the death of a loved one. Even more, authors claim that meaning is what makes suffering more bearable, and its absence will lead not only to hopelessness, but depression (Wong, 2010 ). It has even been postulated as an adaptive mechanism aimed at reducing our distress with therapeutic benefits associated to its use, whereas parents who are unable to make sense of their child's death show higher levels of complicated grief (Lichtenthal & Breitbart, 2015 ). Also, in literature, the concept of meaning has been closely related to those of religion and spirituality and it has been demonstrated that mourners also make use of spiritual beliefs as coping strategies. In fact, spiritual meaning making is a broad term used to describe this connection between the concepts, and it would therefore be a mistake to assume that meaning is the only tool that ensures a better well-being amongst those who suffer losses. Proof of this is the evidence that people who are religious have an easier time finding meaning after the death of a loved one and that the creation of spiritual meaning has actually been shown to act as an underminer of complicated grief. With this, it is then observed that in addition to meaning, religion also acts as a protective factor, being able to better position those who suffer the loss of a family member (Burke et al., 2014 ). In fact, some empirical evidence using Structural Equation Modelling supports this idea; for instance, Bernabé-Valero ( 2012 ) defined Gratitude towards Suffering (GS) as the capacity to experience Gratitude in spite of adversity and tested a model in which this type of Gratitude (GS) was predicted by spirituality and the meaning of Life, obtaining very favorable adjustment indices.

These principles just outlined make particular sense from Niemeyer's point of view, which holds that one of the most important therapeutic tasks in dealing with grief is to make sense of the loss (Worden et al., 2013 ), a capacity which is greatly impaired in the course of pathological grief (Jordan & Litz, 2014 ). This highlights the need for a greater implementation of this therapy in which professionals are equipped with the ability to help patients find happiness and meaning, restore their hope and create a life worth living (Wheeler, 2001 ) as the attempt to make sense of loss has been shown to be effective, to increase the well-being of bereaved people and to reduce complicated grief symptoms (Neimeyer, 2015 ). As a final contribution of this therapy to this field of intervention, we add the observation that those who did find meaning in the study conducted by Wheeler ( 2001 ) were able to value life more, grow as individuals, care more for others and accept what cannot be changed, amongst many other benefits.

In view of these findings, it is important it to be aware of what are the main intervention strategies that this therapy can provide to achieve such results. To start with, in their paper, Wong ( 2015 ), state that this therapy uses what is known as socratic dialogue as one of its main intervention tools. This concept is based on the principle that the answers patients are looking for are already within themselves and that these can be found through a series of questions formulated by the therapist. Secondly, meaning centered psychotherapy intervenes through the double-vision strategy, a technique which makes the patient see his or her problem from a different perspective, usually being a universal rather than a personal one. In relation to perspective, this therapy also offers another strategy known as perspective taking, a technique that consists on seeing a particular situation from another person's perspective or from a different part of oneself. Next, another intervention strategy used in this approach is the so-called fast-forwarding technique, which consists in a set of methods which project the patient into the future and making him or her assess the impact that their current behavior will have on it. Next, this therapy also provides professionals with an intervention called dereflection, which has as an aim focusing patients' attention on what is truly important and to bring them to a state of self- transcendence by asking questions that distance them from their concerns. Gratitude exercises, for their part, aim to make people aware of the good things they normally take for granted or ignore. By doing so, the technique manages to bring focus on the positive aspects of life and make patients experience an enhanced wellbeing. In last place, the cultivation of intrinsic self-worth is an intervention based on the principle that self-confidence comes from oneself and therefore, patients learn through it that external validation is not necessary to feel a valid being (Wong, 2015 ).

In addition to all these interventions, meaning centered psychotherapy has two other fundamental resources which are considered worth mentioning. These are the PURE and ABCDE techniques. The main objective of the PURE intervention strategy (purpose, understanding, responsibility and enjoyment) is to increase patients' positivity through the use of adaptive responses in both positive and negative situations. The ABCDE technique (acceptance, belief, commitment, discovery and evaluation), on the other hand, is the main tool used to cope with prolonged negative life experiences (Wong, 2010 ). It is interesting that these two techniques can be combined into one by a final intervention known as the dual-system strategy, which aims to integrate and balance the negatives and the positives of life (Wong, 2015 ).

But what are the basic elements that must be present for these interventions to be truly effective? First of all, Wong ( 2010 ) talk about the concept of acceptance, understanding that no change will be achieved unless the patient recognizes that he/she has a problem. This state of acceptance can be achieved through the use of some techniques, such as describing the problematic in a detailed and comprehensive way or through the practice of mindfulness or forgiveness. In second place, action, described as taking responsibility for one's own life, can be addressed by the therapist through the establishment of goals and plans to achieve what is desired by the patient. Finally, during therapy there will always come a time when patients will see themselves in a new light, something referred by authors as the discovery factor. For this to happen, therapists must employ during the course of the sessions a series of interventions such as meaning construction, magic and socratic questioning, amongst others.

To the best of our knowledge, there are few studies that refer to the application of this and other types of post- death therapies for parents. In fact, over the course of the investigation, only two systematic reviews have been found in recent years that are in line with our research, and these reviews report a rather limited number of studies on the subject, altogether comprising around 30 papers (Ainscough et al., 2019 ; Kochen et al., 2020 ).

Therefore, in view of the prevailing scenario, our review intends to fill this literature gap for several reasons. In first place, it is concerning that a total of 59% of parents were not able to make any sense of the loss of their children in the study carried out by (Bonanno & Kaltman, 2001 ). Secondly, given the traumatic experience that this entails for the parents, it often increases marital tension, leaving them exposed to possible couple's break-ups and, either because of this or because of their state of bereavement, the remaining children do not receive the necessary attention (Neimeyer & Ramírez, 2002 ). This, together with the fact that we live in an era where children's admissions to health centers are growing at a frenetic pace (Ballestín et al., 2007 ), emphasises the need for support networks and the implementation of specific therapies for both parents and siblings. In fact, they themselves have demanded this support 80% more in recent years (Ballestín et al., 2007 ). Last of all, the need to raise awareness of this therapy and implement it to a greater degree is also pointed out by the fact that sudden deaths are considered to be more traumatic and do not offer the opportunity to elaborate anticipatory mourning, making overcoming this type of loss much more complex (Ballestín et al., 2007 ).

It is our hope then, that this review will be able to compile a number of interventions that have been effective in the last few years, both in the treatment of bereavement and in the elaboration of meaning, so that it can serve as a basis for professionals to continue to help this collective in the reconstruction and construction of a new reality.

Methodology

This systematic review was guided by the standards of the Preferred Reporting Items for Systematic Review and Meta- Analysis (PRISMA) Statement, which includes the following main stages: 1) Identification, 2) Screening, 3) Eligibility and 4) Inclusion (Moher et al., 2015 ).

Search strategy

In view of the current situation regarding our topic of interest, which did not have -to our knowledge- enough recently published clinical trials which prevented the option of conducting a meta-analysis and where scant research has been conducted, prior to presenting the process, it is worth mentioning and clarifying that the entire search was carried out with two clear objectives in mind: to gather as many documents as possible and to try to ensure that these were as close as possible to our interests. This is why in the course of the quest, as we saw how limited the number of documents obtained in the first searches were, we reconsidered the matter until we found the search equation that not only differentiated us from previous studies, but was also capable of increasing the results obtained. A full explanation of this process is described below.

The first step regarding the electronic search was to formulate the research equation. This was done using the PICO approach, a tool which provides a format through which investigators can accomplish this at the same time it ensures that searches made will be more precise and of a bigger quality. PICO approach stands for: Population, Intervention, Comparator, Outcomes and Study. However, as the present systematic review did not intend to compare different types of interventions with each other, component "C" (Comparator) was omitted, resulting in the format remaining as PIO (Landa-Ramírez & de Jesús Arredondo-Pantaleón, 2014 ). In order to ensure that the research question complied the maximum documents as possible and that that their quality, relevance and accuracy was high, the words that constituted it were selected using the Thesaurus available at EBSCO ´s database. This tool was employed to create a list of controlled terms that would give homogeneity to the vocabulary used when searching the articles in the databases (Landa-Ramírez & de Jesús Arredondo-Pantaleón, 2014 ). Following the same interest, PICO approach was also used to implement Boolean operators and Truncations in the search query. Therefore, the Boolean "AND" was inserted to obtain any document that included at least one of the selected key terms, whilst truncations were included to ensure the retrieval of all the linguistic variants of a search term that shared a common root (Aleixandre-Benavent et al., 2011 ).

Ultimately, once the research question was formulated and the controlled terms for the key words were identified, it was time to start the search to address the question that inspired this systematic review: In the last years, what has been the effect of grief interventions for parents who have lost a child? This is how, following the Preferred Reporting Items for Systematic Reviews and Meta- Analyses (PRISMA) standard (Moher et al., 2015 ) already mentioned, the search equation shown below was entered into EBSCO, SCOPUS and WOS databases during the months of October and November 2021:

After the documents had been extracted, the next step consisted in removing the articles that appeared in several of the databases. Once there were no duplicates, two stages of selection were carried out, an initial screening phase, where a considerable number of papers were discarded on the basis of titles and abstracts and a second stage known as the eligibility phase where, after a thorough reading of the articles, a second set of inclusion and exclusion criteria were applied in order to re-judge their suitability for the research (Table ​ (Table1 1 ).

Selection criteria for studies in the eligibility phase classified according to PIOS indicators

Inclusion and exclusion criteria

The reasons behind the selected criteria implemented were for example, the detection of two fairly recent systematic reviews that were in some form, similar to our desired research (Ainscough et al., 2019 ; Kochen et al., 2020 ). This caused the decision of differentiating the present research from them as follows: a) By including only the work published since their last inclusion dates (June 2015), b) by expanding the age range of the sample, c) by only focusing on post-death interventions and lastly, d) by including treatments done from a logotherapic and existential approach.

Regarding the electronic search, for the reasons already mentioned concerning our area of interest, it was important to gather as much documents as possible. In this way, the only limits applied in the electronic search were dates of publication, whilst in the case of language, it was decided not apply any limit as translation would be carried out if needed. These limitations resulted in the following searches: Web of Science (2016- Present), Scopus (2016- Present) and EBSCO (July 2015- Present). These databases were chosen since they stored scientific literature at an international level, which was of interest given the scarcity of documents. Within EBSCO, with the aim to make the search as precise as we could, the only selections made were Psychinfo and Psychology & Behavioral Sciences Collection whilst in WOS and SCOPUS, all journals were included.

As mentioned above, in order to include the articles that were the most relevant to the interest of this review, PIOS approach was again used in deciding the inclusion and exclusion criteria applied in the document search at the eligibility stage. The criteria implemented in this second analysis of the documents can be found in Table ​ Table1 1 .

Study selection and screening

The results obtained and the selection process conducted for the systematic review are presented in Fig.  1 . As it can be observed, the initial units of analysis consisted of a total of 485 records, which after the deletion of duplicates was reduced to 423. Next, in the screening stage, 365 articles were excluded on the basis of their titles and abstracts according to the reasons listed in Table ​ Table2. 2 . This then led to an exhaustive reading of the full texts of 58 papers, where only 21 of them were included in this qualitative synthesis. Of the 21 documents, 20 were identified during the database search, while 1 was found through the bibliography of one of the selected articles.

The flow chart of the information used to answer the review question

Showing reasons why items were excluded in the screening phase

Next, two tables (Table ​ (Table3: 3 : Socio-demographic characteristics) and (Table ​ (Table4: 4 : Main results of the studies) will be presented along with a narrative description of the interventions.

Socio-demographic characteristics

N/A: not available information

Main results

Characteristics of the studies included

The following table (Table ​ (Table3) 3 ) shows the most important socio-demographic characteristics of the included studies, such as the country where the study was conducted, the number of participants, the gender of parents and the age of their child at time of death.

On the other side, all the information that was considered important regarding the results of the investigations was collected and included in Table ​ Table4, 4 , which contains the following sections: Main author, Title, Sample size, Design, Instruments used, Main results and Limitations.

Demographic data

The included studies were published during the period from 2016 to 2021. The sample comprises 766 females while 440 are males, bringing the total number of parents who participated in the research to 1,828. The gender of 388 participants is not specified and in three of the studies gender-related data is not available. The ages of sons and daughters at the moment of death range from deceased before delivery to 49,75 years old. Studies have been carried out in several countries, with the USA being the country where most of them were conducted (47,6%), followed by Finland (9,5%), and leaving the rest of the countries evenly matched, with only one study carried out in each of them, making them represent 4.76% of the total individually.

Study designs

It has been observed that the 21 empirical studies included in the systematic review were very heterogeneous in terms of the designs used. Out of these 21 papers, ten of them were quantitative studies, nine used qualitative designs and two of them implemented both approaches, resulting in mixed methods designs. More information regarding the designs used can be found in Table ​ Table4 4 .

Typologies of intervention

When analyzing the studies, six major typologies of intervention were identified. These were as follows: six of them used support figures as intervention tools (28,57%), four studies were carried out from Contextual and Existentialist models (19,05%), another four applied bereavement treatment through the use of objects and materials (19,05%), three of them applied online interventions (14,29%), three interventions were carried out through the implementation of family support programs (14,29%) and finally, one implemented a couple-based intervention (4,76%). Following a brief overview is presented of each of the studies undertaken in the aforementioned typologies.

Online interventions

In the case of online interventions, the study carried out by Weaver et al. ( 2021 ) consisted of an online bereavement support group via Zoom platform that lasted for a total of eight weeks. Each week, patients were explained one of the topics included in the programmes summary and received psychoeducation on it. Another study designed an online questionnaire which aimed to examine the benefit and burden parents felt when they were asked about their perceptions of their children's end-of-life experiences (Tager et al., 2019 ). The last intervention using this format provided virtual cognitive behavioral therapy to parents. This therapy consisted of a website containing a set of weekly modules that patients had to complete on a regular basis. Some examples of the topics included in the modules were: open questions, behavioral assignments or reading a selection of texts (Sveen et al., 2021 ).

As for the interventions applied through different models, one was conducted through a Contextual model implementing mindfulness as a tool (Thieleman & Cacciatore, 2021 ) whilst three of them were based on the Existential model and the fundamental ideas of meaning-centered therapy. Out of these studies, Lichtenthal et al. ( 2019 ) implemented open trials of meaning centered grief therapy, and through this cognitive-behavioural-existential intervention, experiential exercises were performed and themes such as meaning, identity, purpose and legacy were addressed with participants. Secondly, Záhorcová et al., ( 2021 ) conducted a study where 21 bereaved parents were randomly assigned to different conditions. In this way, the control group received an educational intervention in forgiveness, whilst in the experimental group, participants underwent a humanistic psycho-educational intervention in bereavement. Finally, the last intervention identified in this review using the meaning-centered approach consisted of 14 sessions each lasting two hours, framed within Frankl's logotherapy and Worden's grief tasks (Ancona Rosas & Cortés Ayala, 2020 ).

Couplecounselling

Out of the 21 documents, only one described the use of couple counselling for bereaved parents. This paper specifically, consisted in the application of a mentalization intervention that consisted in the monitoring of one therapeutic process in which seven counselling sessions were examined over a four-month period. Qualitative thematic analysis was used to control the process, as through it, it was possible to see if any substantial changes occurred in the capacity to mentalize throughout the course of the treatment. Authors achieved to notice these changes thanks to the identification of certain topics in the couples’ speech and by measuring the rate at which these emerged in the following sessions.

A total of six articles employed support as a bereavement intervention. However, it is remarkable that two subtypes of support have been observed, one being peer support and the second being support offered by hospitals, medical institutions and healthcare teams. Peer support was implemented in three of the studies. In first place, the investigation conducted by Raharjo et al. ( 2020 ) made use of written support in order to decrease parents’ loneliness and normalise grief experiences. This support was provided by a book created by other bereaved parents with the aim to offer assistance to those who had been recently bereaved. Secondly, another paper implemented a professionally led peer support group process where peer work took place over a period of 2 years (Turunen & Punamäki, 2016 ). Lastly, this type of intervention is also found in the study carried out by Aho et al. ( 2018 ) where, a family weekend support group containing candle- lighting ceremonies, musical presentations, poem recitals, and outdoor activities was used in order to reduce post-traumatic stress reactions in parents.

As mentioned, the other half of the studies explored how the support provided by medical institutions and professionals impacted on the parental bereavement journeys. The study conducted by Snaman et al. ( 2016 ) explored this effect through a bereaved parent mentoring programme containing, among other things, remembrance ceremonies to honour deceased children. Following this, the association between therapeutic alliance and parental grief was also addressed in the work carried out by Suttle et al. ( 2021 ). Here, in a multi-site observational study carried out in eight children's hospitals, authors analyzed the extent to which the therapeutic relationship between families and health professionals was associated with a better reduction of complicated grief symptoms and better general health. Last, the hematology/oncology bereavement programme created by The Boston Children’s Hospital is another example of the implementation of medical support when accompanying parents. In particular, this programme provided support to the families in the form of recurrent mailings (Edson, 2021 ).

Use of objects and materials

To continue, four documents have been found in which different materials and resources were used as intervention tools. The articles included contain the use of chinese brush painting, memory making decorations, nature and buttons to work on grief. This is how Xiu et al. ( 2020 ) conducted a six- month pilot study in which Chinese art practices were practiced two hours a week to see the effect they had on parental bereavement. Parents were asked to draw everyday subjects that had an important, profound and philosophical meaning in Chinese culture. Next, memory making was other of the interventions used, through which, using foot moulds, footprints and other techniques that facilitated the expression of emotions, authors studied the impact that their children's tangible memories had on parental bereavement (Clarke & Connolly, 2021 ). Another resource that was put in practice in one of the studies is nature. Nature, more specifically, gardening, was used as a therapeutic tool to assist a mother bereaved by suicide in the study conducted by Machado and Swank ( 2019 ). Lastly, Schon ( 2018 ) from a co-constructivist perspective and through family constellations, used buttons that symbolized each one of the family members in order to help the family overcome the loss.

Family support programs

To end, family programmes are implemented as a grief intervention in three of the studies. The first one consists in a bereavement programme at St. Jude Children’s Research Hospital where parents and families had the opportunity to participate in clinical interventions conducted by a bereavement coordinator (Snaman et al., 2016 ). Secondly, the study carried out by Henning et al. ( 2021 ) consisted in the implementation of two different interventions and their subsequent comparison. The first one consisted in free weekend family camps organized twice a year where families received grief psychoeducation. The other intervention described in their study involved a group intervention aimed exclusively at parents that lasted a total period of 6 weeks. For their part, Baumann et al. ( 2022 ) made use of family programmes in a 4-week family oriented rehabilitation programme (FOR), which included professionally guided group therapy sessions.

Major outcomes

The present systematic review aims to verify to what extent the most recent interventions in this field actually have a healing effect on parents. For this reason, the studies will be presented under the following headings: those that have shown benefits and those that, despite having shown some advantages in certain areas, are more inconsistent with regard to their results. More detailed information concerning these outcomes can be consulted in Table ​ Table4 4 .

Interventions with healing effects on parental bereavement

After the in-depth analysis of the results displayed by the studies, a total of 16 documents were found to bring benefits to bereaved parents. This represents 76.19% of the total. A synthesis of these results is presented below.

First of all, two of the three studies implementing online interventions actually succeeded in positively impacting parental grief (Sveen et al., 2021 ; Weaver et al., 2021 ). Both papers agree in the fact that online interventions are acceptable as tools for dealing with bereavement. These studies report that parents gained satisfaction and acquired communication abilities. Furthermore, a pattern was present in which the intervention group exhibited a tendency to show a decrease in: grief rumination, prolonged bereavement symptoms, post-traumatic stress, anxiety and depression.

Next, four papers found that the use of Existential and Contextual models can promote meaningful benefits for bereaved parents. Lichtenthal et al. ( 2019 ) observed that meaning-centered grief therapy had an impact on symptoms of prologued grief, quality of life, depression, and hopelessness at the same time it contributed to meaning-making and posttraumatic-growth. This positive psychological change referred to as posttraumatic-growth was also reported in another paper where the experimental group experienced, in addition, two other psychological changes, these being a decrease in their anxiety and depression levels (Záhorcová et al., 2021 ). On the subject of Quality of life, Ancona Rosas and Cortés Ayala ( 2020 ) found that their intervention, through the use of sense- making, also contributed significantly to its improvement, by reducing the depressive state of the participants and by facilitating the development of alternative meanings attributed to the situation of loss. Lastly, in the field of Contextual models, Thieleman and Cacciatore ( 2021 ) stated that through mindfulness training, parents had the opportunity to allow painful emotions related to grief to emerge and heal, as well as changing their attitude towards their process to one of gentleness, something which made the grief journey considerably easier for them. Another benefit of this retreat was that participants were able to practice the ability to share their feelings openly and honestly with others, something that enabled them to maintain permanent links with their lost children.

For their part, Janusz et al. ( 2020 ) concluded that couple counselling helped parents in a number of ways. First of all, couple therapy was shown to be successful in alleviating the parents' traumatic grief symptomatology. Secondly, it also brought improvements to their couple relationship and their existing support system. And, finally, it was able to provide support in the parents' task of preserving a connection with their child both in a mental and spiritual way.

To continue, three of the six papers (50%) that used assistance to parents in some of the above-mentioned formats showed positive results (Edson, 2021 ; Snaman et al., 2016 ; Turunen & Punamäki, 2016 ). These papers agree in the fact that support, when received from professional figures and institutions either in the form of mailings, through the guidance of support groups or simply by their presence and accompaniment, relieved the suffering of the parents at this vital moment and therefore, it is a suitable form of treatment. For example, by the participation in support groups, parents were given the chance to witness how other peers in the same situation were coping with the loss as well as learning from them and enhancing their coping styles (Turunen & Punamäki, 2016 ). Another illustration of this is the fact that in one study, 87.2% of the participating parents felt that merely receiving mailings from the hospital was supportive and healing (Edson, 2021 ).

The studies conducted by (Clarke & Connolly, 2021 ; Machado & Swank, 2019 ; Schon, 2018 ; Xiu et al., 2020 ) share a number of positive outcomes associated to the use of materials and resources as grief interventions. In the case of the implementation of materials to create tangible memories of the deceased, it was observed that, memory making aided parents to experience less symptoms of complicated grief and was seen by the parents as hugely comforting and beneficial (Clarke & Connolly, 2021 ). Furthermore, the maladaptive emotions of guilt and sadness experienced by a mother bereaved by suicide were diminished by the use of gardening and nature as resources, as it can be appreciated in the study conducted by Machado and Swank ( 2019 ). Next, buttons were proved to be a valuable tool for intervention as they contributed to the creation of a new dynamic within the family that facilitated their grieving process, both individually and collectively. This was accomplished by: facilitating the expression of emotions and experiences within the family, helping them to adapt to the new situation, placing the deceased daughter in a place in the family system that allowed them to move forward and, ultimately, creating new and valuable connections between them (Schon, 2018 ). The effects of brush painting in the process of grief are shown in the study conducted by Xiu et al.( 2020 ). Here, authors noted that, in comparison to the control group, grieving parents who painted were more likely to prevent prolonged grief symptoms, experience positive mental health outcomes, have a better emotional regulation as well as a better mood. However, brush painting, in addition to these benefits, showed some results that were less promising. These will be described in the next section.

To end, Snaman et al. ( 2017 ) found that the participation in family programmes positively impacted the grief experience experimented by bereaved family members. More concretely, 81% of parents when asked about the usefulness of one of the components of the programme, indicated that it was helpful and beneficial for them. Next, another positive impact of a family bereavement intervention was observed in the results obtained by Henning et al. ( 2021 ). The authors state that both groups of participants identified benefits such as: improved mood and coping capacities, enhanced relationships and communication within their families, as well as a better overall mental health due to their involvement in the intervention.

Interventions with less conclusive effects

On the other hand, the next section will describe the five studies (23,81%) that, while showing some positive results, also show more ambivalent conclusions in terms of their impact on parental bereavement. In the case of Raharjo et al. ( 2020 ), whilst 87,5% of the parents felt comforted by the reading of the book, the exact same number (87,5%) presented a negative emotional reaction to it, stating a feeling of sadness after the lecture. Next, as already argued, the pilot study conducted by Xiu et al. ( 2020 ) showed overall positive results, but no effect of the intervention was found in the negative affect of the participants, making their negative emotions remain the same once the experiment had concluded. Third, another study with mixed results was the one conducted by Tager et al. ( 2019 ), which found out that the participation in their online survey was perceived as a small burden by half of the parents who were involved. Adding to this, another paper with less redundant results was the one designed by Suttle et al. ( 2021 ). In this paper, therapeutic alliance was shown to have several benefits for parents, but was not associated with better health, remissions in depression or in post- traumatic stress symptoms. Following, Baumann et al. ( 2022 ) concluded that their intervention brought significant remissions in symptoms of complicated grief, but these symptoms were still present when parents left the programme, making the findings for this experiment doubtful. Even more specifically, authors found that 21.1% of participants still experienced severe symptoms of prolonged grief disorder, 68.1% maintained the symptoms of complicated grief, 22.6% still had depression symptoms, and 30.3% of them remained with symptoms of PTSD. Last of all, it was found that despite having a positive effect in some areas, the peer support intervention designed by Aho et al. ( 2018 ) did not succeed in ending the stress responses of the parents who had lost a child.

The purpose of this systematic review was to compile the most recent interventions conducted in the last few years, to examine how beneficial they have been for the support of parents in their grieving process and to see if meaning- centered therapy is being implemented with the sufficient constancy in this area.

It has been found that the 21 interventions carried out in the last 6 years have -for the most part- been helpful in dealing with bereavement. However, despite showing this favorable trend, the included interventions have an enormous heterogeneity in terms of their designs, highlighting that research in this area is not particularly consistent and that there are no properly established lines of intervention. This confirms one of the hypotheses we had prior to conducting the review and is coherent with Endo et al. ( 2015 ), which already pointed out the impossibility of comparing the effectiveness of different interventions due to their heterogeneity. In addition, of the 485 studies retrieved in the preliminary search, the vast majority had nothing to do with the treatment of parental bereavement, and the recruitment of papers that actually met our criteria was a laborious process. This supports another of our hypotheses: the paucity of empirically validated studies on this topic, something also mentioned by Ainscough et al. ( 2019 ).

With regard to the literature already existing at the time of this review, it is worth stating briefly that the two aforementioned systematic reviews already offered a number of findings similar to ours (Ainscough et al., 2019 ; Kochen et al., 2020 ). For their part, Ainscough et al. ( 2019 ), also agreed on the lack of rigorously conducted studies with control conditions and how this which greatly limits the reliability of most studies. The recognition of the methodological problems that exist in most of the published papers is also shared by Kochen et al. ( 2020 ). The results obtained are also in harmony with previous ones in the tendency to show a decrease in depression, stress disorders and stronger personal growth as a consequence of the implementation of some of the interventions. However, even though these pre-post effects are observed across the reviews, results, in most cases, do not reach the required threshold to be considered significant, questioning whether the latest interventions actually provide the necessary accompaniment for the bereavement of these parents. Agreement is also found in the fact that throughout the papers the positive effects of support, remembrance and psychoeducation are consistent.

However, there are cases where the conclusions obtained do not coincide with the findings of prior systematic reviews. This may be attributable to the heterogeneity of the work in this field, which makes it very challenging to compare the current literature with that of our own. Keeping this in mind, our results differ from those previously obtained as follows. First, it has been observed that other systematic reviews refer exclusively to interventions carried out by hospital staff whilst this paper comprises interventions conducted by researchers, psychologists, institutions and other figures. As well as the studies led by different professionals, the same applies to the variables under analysis, as, different kinds of them are measured in the encountered reviews, something which again complicates any kind of comparison between the results presented. However, being aware of these differences but momentarily putting them aside, it is true that contrary to the trend observed for the results of Ainscough et al. ( 2019 ), this review is able to present several examples of significant results within its selected papers. Examples of this can be found in the study conducted by Edson ( 2021 ), which managed to obtain significant outcomes for prolonged grief, meaning in life and depression and in the case of the participants undergoing the study conducted by Ancona Rosas and Cortés Ayala ( 2020 ), which achieved significant changes regarding their quality of life. This might be explained by the fact that these results belong to quasi-experimental pre-post and randomized controlled trials and are, therefore, able to provide more solid and valid conclusions. The same is true for the age of the children at the time of their death. While the last published paper (Kochen et al., 2020 ) focuses on perinatal deaths (understood as the death of the fetus or newborn within the perinatal period, that is, from the 28th week of pregnancy until the first week of life), our review covers a much wider range of age as we believe that although the children are grown adults, they still have the capacity to reverse the life of their parents with their death (Wheeler, 2001 ).This could also be significant when comparing results as, depending on the age and causes of death, the psychological reaction, and therefore the response to the intervention, may be different (Ballestín et al., 2007 ).

There are instances, however, in which the results of this study are able to provide a number of new insights in relation to the most recent reviews and existing theory. For example, it has become clear that there is an abysmal difference between the participation of men and that of women. This is alarming as it indicates that currently, there is minimal support for fathers who experience the death of a child and that the male population may not be receiving the assistance they need to grieve in a healing way. This reality was already mentioned by Cacciatore et al. ( 2013 ), which stated that fathers, when dealing with the loss off child, report feeling neglected by their professional and personal environment as they are often attributed a less severe grief than that of their partners. The need for inclusiveness in these interventions is also highlighted by two other discoveries, being this the fact that most of the studies include samples composed solely of white women and the limited accessibility that exists to some of the interventions included, some of them being only available in English and for those with access to the internet and computers. This highlights how many people may currently be excluded from receiving assistance simply because of their language, country or technological acquisitions.

Once having discussed our results with the already published literature, it is important to emphasise the initial objective of this work. As it has been mentioned throughout the document, the task of finding interventions carried out in recent years for this specific population group was costly, and, not only this, the conclusions that can be drawn from many of those that we did manage to recover, are in many cases inconclusive. Nevertheless, it should be added that, despite the limited number of papers, the most recently published interventions have been able to mitigate to a large extent many of the negative symptoms experienced by parents.

It has already been mentioned that in terms of intervention typologies, the type of intervention that we have been able to recover the least amount of documents is Couple Counselling, with only one intervention focused on this field when it has been shown to have great potential when it comes to increasing the social bonds of these parents, something that is of vital importance to them. This importance is also reflected in the fact that interventions that use support as an intervention account for the majority of the articles in our work, making them the two most popular and most widely implemented in the field.

Following, the positive effect of the implementation of meaning-centered therapy has also been observed and included, something that—to our knowledge—has not been done in any other systematic review. Effects such as reductions in prolonged grief, depression and hopelessness in combination with the limited number of interventions found from this approach, point to the importance of a greater inclusion of this model in bereavement counselling. In his work, Neimeyer ( 2015 ) also supported this claim by stating that not being able to find meaning was associated with prolonged and complicated bereavement symptoms in parents who had lost a child. Adding to this and to conclude, other systematic reviews have not included the utilization of online support techniques for bereavement. Something that, in our opinion, is essential due to the implementation of online psychological support as a consequence of the Covid-19 pandemic that spread across the world in the year 2020. This review underscores that these tools are able to promote helpful coping skills even at times when, due to restrictions or distance, parents are unable to physically receive this help. Jordan and Litz ( 2014 ) further highlight the benefits of this intervention modality by presenting evidence that in a 5-week email-based intervention, parents experienced a significant reduction in PGD symptoms compared to those in the control group.

As noted above, the inclusion of this type of therapy is both new in the field and one of the main reasons behind the present paper's research. However, although this article is sufficient to extract a brief outline of the benefits of this type of therapy in parental bereavement, three interventions are insufficient to draw any clear conclusions. Nevertheless, as described in the results section, it has been observed that, broadly speaking, this type of intervention has been able to reduce, among many things, prologued grief disorder and that the ability to confer meaning to this experience produces noticeable beneficial effects.

It has also been pointed out that not everything is positive in this field and that some of the interventions described do not offer significant benefits. However, we remain optimistic that these and other obstacles we have uncovered in the course of this research are learning opportunities for the sector to gradually learn how to better support bereaved parents.

Limitations and future investigations

However, our work has certain limitations. One of them is that, given the small sample of documents obtained at first, the search equation was expanded considerably, gathering too much information that in most cases was not useful. As a result, we also obtained very diverse documents from where it was difficult to obtain common results. This highlights the need to include stricter selection criteria in terms of methodology in future research. Continuing, trends for improvement are observed in most interventions but these are usually not significant and many of them are based on self-reported data, which decreases the results' reliability and the enthusiasm for the positive effects observed. Lastly, one of the objectives was to include meaning-focused therapeutic interventions and a small number of them were found, making their contributions in this review not very representative as a whole. Nevertheless, despite its limitations, this study provides a representative picture that we consider adequate as a basis for future systematic reviews conducted in this particular field.

We recommend that future investigations include control groups and robust designs such as randomized controlled trials to truly test the effect these interventions have on parents, and as already mentioned, to be more inclusive in terms of gender and age. Furthermore, it would be interesting to conduct further investigations that work from an Existentialist model and use meaning in life as an experimental variable. Last, we would like to encourage Spanish researchers to further exploit this field, since in 2020, out of every 1,000 births in our country, 2.66 children under the age of one died, no intervention has been published in Spain in recent years and literature clearly exposes the need to design more validated and efficient interventions for this population.

Conclusions

Overall, although the results of the reviewed papers point to the usefulness of bereavement interventions, further methodological strength is needed for meta-analyses to be carried out in the future. Within the typologies, the effectiveness of the meaning-centered grief therapy is highlighted. However, given the existing heterogeneity within interventions and their scarcity, it is not possible to determine to what extent their results are specific to their approach and therapeutic procedure. This review calls for the need for psychologists and health professionals to actively work in this field in order to address the flaws that have been identified.

Data availability

Declarations.

(Include Appropriate Statements) not applicable.

The corresponding author states that there is no conflict of interest.

Publisher's note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Contributor Information

L. Pelacho-Rios, Email: [email protected] .

G. Bernabe-Valero, Email: [email protected] .

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• Craft Essays
• Teaching Resources

Getting Lost—and Found—in Personal Narrative

The ways of getting lost are no doubt infinite, but here are three, with prompts, that provide ample exploration in personal narrative:

Lost in a New Place

In her essay, “Typical First Year Professor” from Bad Feminist (Harper Perennial, 2014), Roxane Gay writes about moving to a small midwestern city to take her first full-time teaching job. She gets lost in her new building and must adapt and redefine herself in a setting very different from what she left behind:

I have an office I don’t have to share with two or four people. My name is on the engraved panel just outside my door. My name is spelled correctly. I have my own printer. The luxury of this cannot be overstated. I randomly print out a document; I sigh happily as the printer spits it out, warm. I have a phone with an extension, and when people call the number, they are often looking for me. There are a lot of shelves, but I like my books at home. In every movie I’ve ever seen about professors, there are books. I quickly unpack three boxes, detritus I accumulated in graduate school—sad drawer trash, books I’ll rarely open again—but I’m a professor now. I must have books on display in my office. It is an unspoken rule.

Gay’s arrival changes the landscape for her students, too. “Students don’t know what to make of me. I wear jeans and Converse. I have tattoos up and down my arms. I’m tall. I am not petite. I am the child of immigrants. Many of my students have never had a black teacher before. I can’t help them with that.” She clarifies that what’s unfamiliar to her students is not new to her. “I’m the only black professor in my department.” Although this aspect of her landscape is unchanged and unlikely to change, Gay acclimates to her new world and “finds” a transformed self in this new environment.

Think of a time when you started a new job or moved to a new place. List physical aspects of the setting that differed from where you’d been before. How did those differences represent who you were expected to be in the new place?

Bonus Prompt:

What physical traits such as attire, gender, body shape, mannerisms, skin color, ornamentation, did others see as unfamiliar? How did those differences affect your sense of belonging? What, if anything, helped you and others appreciate those differences?

Lost on the Way to a New Place

Sometimes we get lost travelling to a new place. In her essay, “Dear Mother,” from Dear Memory: Essays on Writing, Silence, and Grief (Milkweed Editions, 2021) , Victoria Chang contemplates her mother’s loss of homeland when, as a child, she relocated with her family from China to Taiwan. In epistle form, the narrator writes, “I would like to know if you took a train. If you walked. If you had pockets in your dress. If you wore pants. If your hand was in a fist, if you held a small stone.” Through Chang’s questions, we see the family’s exodus as disorienting, possibly frightening for a child, and how she might have carried something to remind her of home. “I would like to know if you thought the trees were black or green at night, if it was cold enough to see your breath, to sting your fingers. I would like to know who you spoke to along the way. If you had some preserved salty plums, which we both love, in your pocket.” The questions connect Chang with her mother but also reveal how the mother’s later move to the United States resulted in Chang’s lost connection with her extended family:

I would like to know where you got your food for the trip. Why I never knew your mother, father, or your siblings. I would like to have known your father. I would like to know what his voice sounded like. If it was brittle or pale. If it was blue or red. I would like to know the sound he made when he swallowed food. I would like to know if your mother was afraid.

Draft a letter to someone from your past whose journey entailed loss. This could be to a loved one who journeyed from life to death, or a relative sentenced to prison, or a friend who left home. Ask about what they saw, heard, smelled, ate, or carried.

In your letter, list the things you would like to know. Begin with physical details about the journey while allowing room for what you may have lost as a result of their departure.

Lost in a Familiar yet Changed Place

Sometimes we don’t go anywhere at all, but major life events make familiar places feel utterly foreign. In her essay, “ Still Life ” ( Brevity , Issue 62), Joanne Nelson writes of the last time she visited her brother Dale at his cabin:

A still life: barefoot, shirt but no pants, beer bottles and cigarettes and ashtray within reach. Even the smells suspended, unwashed, motionless. Piled mail. The place hazy with cigarette smoke.

Though the narrator cleans and cooks for her sick brother, no attempts to return the cabin to its previous state will return her brother to his previous state. She becomes “lost” in a space altered by illness, but the psychological act of getting lost occurs when the narrator becomes immersed in grief. Five years after his death, when a server calls out “Dale” in a diner, Nelson lists what’s missing, what she misses, what she’s lost:

I’d like to see him cross the foyer of rustling people-filled benches though, have him share in this Sunday morning buzzing energy. Hear him complain about the wait, feel his pockets for smokes, say “don’t give me that look” before stepping outside.

Write about a familiar place that felt altered after a major life event. Note the physical details—what’s new, missing, or altered—that demonstrate how the place, and therefore your life, has changed.

Bonus Prompt :

List odd, quirky, or everyday things you’d never have guessed you’d miss—things you might never see again but are, in their own way, happy reminders of what was special about that time. Alternatively, list things you’ll never miss. For example, stale hamburger buns, cracked lunch trays, and sitting alone in your high school cafeteria.

Jill McCabe Johnson is the author of the poetry collections  Revolutions We’d Hoped We’d Outgrown , shortlisted for Jane’s Stories Press Foundation’s Clara Johnson Award in Women’s Literature, and  Diary of the One Swelling Sea , winner of a Nautilus Silver Award in Poetry, plus the chapbooks  Pendulum  and  Borderlines . Jill is the founder of Wandering Aengus Press and teaches Creative Writing for Skagit Valley College. Recent works can be found in  Slate ,  Fourth Genre ,  Waxwing ,  The Brooklyn Review ,  Gulf Stream ,  Diode , and  terrain.org . You can read more at  JillMcCabeJohnson.com/writing .

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Grief: Coping with the loss of your loved one

Research shows that most people can recover from loss on their own through the passage of time if they have social support and healthy habits.

• Older Adults and Aging

Coping with the loss of a close friend or family member may be one of the hardest challenges that many of us face. When we lose a spouse, sibling or parent our grief can be particularly intense. Loss is understood as a natural part of life, but we can still be overcome by shock and confusion, leading to prolonged periods of sadness or depression. The sadness typically diminishes in intensity as time passes, but grieving is an important process in order to overcome these feelings and continue to embrace the time you had with your loved one.

Everyone reacts differently to death and employs personal coping mechanisms for grief. Research shows that most people can recover from loss on their own through the passage of time if they have social support and healthy habits. It may take months or a year to come to terms with a loss. There is no “normal” time period for someone to grieve. Don’t expect to pass through phases of grief either, as research suggests that most people do not go through stages as progressive steps.

If your relationship with the deceased was difficult, this will also add another dimension to the grieving process. It may take some time and thought before you are able to look back on the relationship and adjust to the loss.

Human beings are naturally resilient, considering most of us can endure loss and then continue on with our own lives. But some people may struggle with grief for longer periods of time and feel unable to carry out daily activities. Individuals with severe grief or complicated grief could benefit from the help of a psychologist or another licensed mental health professional with a specialization in grief.

Moving on with life

Mourning the loss of a close friend or relative takes time, but research tells us that it can also be the catalyst for a renewed sense of meaning that offers purpose and direction to life.

Grieving individuals may find it helpful to use some of the following strategies to help them process and come to terms with loss:

• Talk about the death of your loved one with friends or colleagues in order to help you understand what happened and remember your friend or family member. Avoidance can lead to isolation and will disrupt the healing process with your support systems.
• Accept your feelings . You may experience a wide range of emotions from sadness, anger or even exhaustion. All of these feelings are normal and it’s important to recognize when you are feeling this way. If you feel stuck or overwhelmed by these emotions, it may be helpful to talk with a licensed psychologist or other mental health professional who can help you cope with your feelings and find ways to get back on track.
• Take care of yourself and your family . Eating healthy foods, exercising and getting plenty of sleep can help your physical and emotional health. The grieving process can take a toll on one’s body.  Make sure you check in with your loved ones and that they are taking the necessary healthy steps to maintain their health.
• Reach out and help others dealing with the loss . Spending time with loved ones of the deceased can help everyone cope. Whether it’s sharing stories or listening to your loved one’s favorite music, these small efforts can make a big difference to some. Helping others has the added benefit of making you feel better as well.
• Remember and celebrate the lives of your loved ones . Anniversaries of a lost loved one can be a difficult time for friends and family, but it can also be a time for remembrance and honoring them. It may be that you decide to collect donations to a favorite charity of the deceased, passing on a family name to a baby or planting a garden in memory. What you choose is up to you, as long as it allows you to honor that unique relationship in a way that feels right to you.

How psychologists can help

Psychologists are trained to help people better handle the fear, guilt or anxiety that can be associated with the death of a loved one. If you need help dealing with your grief or managing a loss, consult with a psychologist or other licensed mental health professional. Psychologists can help people build their resilience and develop strategies to get through their sadness. Practicing psychologists use a variety of evidence-based treatments — most commonly psychotherapy — to help people improve their lives. Psychologists, who have doctoral degrees, receive one of the highest levels of education of any health care professional.

This article was adapted from a March 2011 post by Katherine C. Nordal, PhD.

The full text of articles from APA Help Center may be reproduced and distributed for noncommercial purposes with credit given to the American Psychological Association. Any electronic reproductions must link to the original article on the APA Help Center. Any exceptions to this, including excerpting, paraphrasing or reproduction in a commercial work, must be presented in writing to the APA. Images from the APA Help Center may not be reproduced

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• Condolences & What To Say

70+ Thoughtful Sympathy Messages for the Loss of a Child

Updated 04/19/2024

Published 10/25/2019

Sam Tetrault, BA in English

Contributing writer

Cake values integrity and transparency. We follow a strict editorial process to provide you with the best content possible. We also may earn commission from purchases made through affiliate links. As an Amazon Associate, we earn from qualifying purchases. Learn more in our affiliate disclosure .

One of the most tragic events we could experience is losing a child—an absolute heartbreak. Whether lost during pregnancy or later in life, no words take away the pain of this devastating loss. If you know a parent currently experiencing the loss of a child, the right sympathy message can remind them they’re not alone. So, here’s what to say to someone who lost a child.

This type of grief is long-lasting and will not likely fade over time. The more support you can offer, the better. It’s not always easy to find the right words during a traumatic time. While you must understand that your comments can’t take away this pain, they can still show kindness, compassion, and sympathy.

Words carry a lot of meaning and power. Simply knowing friends and family are thinking of them as they navigate these next steps can be a source of comfort. Easily paired with sympathy gifts , these sympathy message examples are appropriate after losing a child.

Tip: If a friend or loved one lost a child, consider sharing Cake's online memorial tool where they can write a beautiful tribute to their child, collect memories and messages of sympathy, and raise funds to help offset funeral or medical expenses.

In this article:

What to say to someone who lost a child.

• What Not to Say to Someone Who Lost a Child

Sympathy Messages for the Loss of a Young Son

Sympathy messages for the loss of a young daughter, sympathy messages for the loss of an adult child, sympathy messages for the loss of an infant or toddler, what to say to someone who lost a child suddenly, what to say to someone who lost a child to drugs, sympathy messages for the loss of a stepchild, sympathy messages for the loss of a daughter or son-in-law, where to share sympathy messages for the loss of a child.

We understand why you would search online for what to say to someone who lost a child. Though offering condolences to someone in need can be uncomfortable, this is one of the many lifesavers given to parents during the darkest times of their lives. 

Here are some ideas on what to say to someone who recently suffered a loss. 

• There’s nothing I can say to take away the pain of this loss. I just wanted to share that I love you, and I’m here for you. 
• Your baby [girl/boy] was such a source of bright light and joy. I will miss them every day. 
• Sending all of my love to you! 
• [He/she] was a beautiful child with a beautiful soul. I’m so sorry. 
• We’re shocked and saddened by the news of [Name]. We care for you so much. 
• The news of [Name] ’s loss was heartbreaking. Please know I’m thinking of you. 
• The time I spent with [Name] was such a gift. The world is better because [he/she] was in it. 
• There are never enough words to express the pain we share with you. The memorial to [Name] was such a beautiful tribute to [his/her] joyful life. 
• [Name] was a beautiful, remarkable child. [He/she] will be missed by all. Know that we’re thinking of you.
• Though cut too short, your amazing [Name] filled our lives with so much love. 

In times of profound loss, expressing empathy through a thoughtful gesture can provide comfort beyond words. Consider gifting a personalized care package , a tender testament to your unwavering support. Laurelbox  specializes in boxes curated for loss, each filled with soothing essentials.  

Pair your gift with a cherished memento or a handwritten note with one of these heartfelt messages below. In this moment of unimaginable sorrow, the gentle embrace of a carefully curated care package can offer a small respite, reminding your grieving loved one they aren’t alone. 

What Not to Say After the Loss of a Child

Firstly, it’s important to share what you shouldn’t say after losing a child. These phrases might come from a place of kindness, but they often sound insensitive or offensive. Avoid any language that blames the parents or implies this was supposed to happen as a part of a greater plan. These aren’t the right fit after any type of loss, especially a young life. 

For example, never share any messages that include these phrases:

• This happened for a reason.
• You still have other children. 
• Your child’s suffering is over. 
• It was just their time to go. 
• You can always have more kids in the future. 

As you can see from these statements above, the focus isn’t on compassion. You should always honor the legacy of the child, no matter how young. 

If you’re unsure what to say, use these ideas below as inspiration for sympathy messages.

Do you know someone who lost their son? This is a heartbreaking loss, and giving comfort won’t come easily. There’s nothing you can do to take away this pain. Still, you can be there for them during a dark time. Show your sincere sympathy with one of these messages below.

1. Your son’s legacy will live on in the hearts of all who knew him. I’m so sorry for your loss. 

2. Sending you my deepest condolences upon the death of your son, [Name]. He was a kind, caring soul, and he will be missed. 

3.  I am always here for you, especially after your loss. Your son was a brilliant light in this world.

4. Little boys leave permanent footprints in our hearts. We will celebrate [Name]’s legacy every day. 

5. I’ll always remember your little boy’s touching smile and laughter. He was such a happy child, and these memories will stay with us always. I’m sorry for your loss. 

6. Though I can’t possibly understand what you’re going through, I wanted to let you know I’m always here for you. I’d love to hear more about your little boy when you’re ready to share. 

7. Your son brought endless joy into this world. I’ll always remember when he…

8. Please know I’m thinking of you and your little boy today and every day. He will forever be in my heart. 

9. I wanted to let you know that I’m always here for you. The bond between you and your son was so strong, and this will never fade.

10. It’s okay if you’re not okay. We’re here for you as we grieve the loss of your beautiful son.

Similarly, losing a young child is like losing a part of yourself. This profound bond might be changed, but it’s never broken. Honor a young daughter’s life and legacy with one of these meaningful sympathy messages below. Perfect for a young girl, make sure each message comes from the heart.

11. There are no words to explain the sorrow and pain you’re feeling. Your daughter will be so missed. 

12. I know words seem meaningless after the loss of [Name]. Still, I wanted you to know that you always have my support and love. 

13. Your daughter was a beautiful angel. The world was a better place because she was in it. 

14. Though young, your daughter lived each day with happiness, grace, and bravery. She will always be with us. 

15. I can imagine no deeper pain than what you’re feeling right now. We are so sorry for the loss of your precious [Name].

16. I’m so sorry to hear of the loss of your baby girl. Nothing I say can make this easier, but please know that she was loved by all. 

17. We will cherish the memories we had with your angel. Together, we will get through this grief. 

18. Your little girl held a special place in our hearts. Stay strong and know we’re with you.

19. We are all deeply saddened by your loss. Please know that your child was loved before she was even born, and that love will never fade.

20. My heart feels so heavy. Words can’t express my sadness, but I’m always here for you.

Losing an adult child is just as difficult as a child, though it can also bring complicated feelings of grief and anger. Sharing empathy and kindness during this difficult time can positively impact someone’s life. Leave your mark on a loved one with one of these sympathy messages for the loss of an adult child. 

21. I’m so sorry. My heart aches for you and your entire family. Your [Name] was a beautiful soul inside and out.

22. I just wanted to let you know that your [son/daughter] was an amazing person. Their positivity and warmth touched us all. 

23. Though I can’t imagine a world without [Name] in it, I know we are all better because we were blessed with [him/her] in our lives. 

24. I’m so sorry for your loss. I will miss [Name] terribly every day. 

25. I know words mean so little after a loss like this. Your [son/daughter]’s generous, compassionate soul created so many meaningful memories. 

26. Like everyone who knew [Name], I feel this loss so deeply. Please take comfort in knowing [he/she] was admired by all. 

27. I’m so sorry for your loss. We were all so blessed to have called [Name] a friend.

28. Every bit of my heart goes out to you and your family during this time. Please accept my sympathy. 

29. Love and hugs to you during this time. Your [son/daughter] will never be forgotten. 

30. It was an honor to know [Name]. Their memory will never fade. 

Though losing an infant during pregnancy, childbirth, or soon after is difficult to talk about, it’s more common than you might realize. In these situations, parents want to feel acknowledged and understood. They want people to keep the legacy of their children alive, even if it’s difficult. 

31. I’m so sorry to hear of your loss. Please know this was not your fault. 

32. Wishing you endless healing and compassion during this difficult time. 

33. My heart goes out to you and your partner as you grieve your baby. Though their life was short, it shined so brightly. 

34. Baby [Name] was so loved. I can’t imagine the pain you’re feeling. 

35. Please be gentle with yourself during this time. Please let me know how I can help. 

36. I’m so sorry to hear of the loss of your baby-to-be. They were already so loved.

37. Please know you’re not alone right now. I’m so sorry you’re going through this.

38. I am so sorry you had to go through heartbreak like this. I’m sharing in your sorrow.

39. Even though [Name] was only with us for a short while, she brought so much joy to the world. 

40. It feels so wrong to have to say goodbye to baby [Name] so soon. Please let me know how I can support you. 

41. I wish your baby [Name] could have stayed with you and all of us for so much longer. 

42. There’s nothing I can say to take away the pain of this loss. I just wanted to share that I love you and I’m here for you. 

43. Your baby [girl/boy] was such a source of bright light and joy. I will miss them every day. 

44. Sending all of my love to you upon hearing the news about your beloved [Name].

45. [He/she] was a beautiful child with a beautiful soul. I’m so sorry. 

46. We’re shocked and saddened by the news of [Name]. We care for you so much. 

47. The news of [Name]’s loss was heartbreaking. Please know I’m thinking of you. 

48. The time I spent with [Name] was such a gift. The world is a better place because [he/she] was in it. 

49. There are never enough words to express the pain we share with you. The memorial to [Name] was such a beautiful tribute to [his/her] joyful life. 

50. [Name] was a beautiful, remarkable child. [He/she] will be missed by all. Know that we’re thinking of you.

51. Though cut too short, your amazing [Name] filled our lives with so much love. 

The grief that comes from a child can’t be quantified. So, someone doesn’t feel more grief if they suddenly lose a loved one. However, when you lose someone unexpectedly, the family also experiences shock. 

Here are some things to say to someone who lost a child unexpectedly.

52. I want to help. I can fold clothes, drop off groceries at your door, help with your kids, or sit with you for a while.

53. Do you need help with anything that worries you? I am available to help.

Sometimes, life doesn’t make any sense. I hope you can find peace.

54. I was so saddened at the news, and I can’t believe (Name) is truly gone.

55. The world lost a fantastic person way too soon.

56. It’s hard to find the words to express how sorry I am for your loss.

It’s natural to be curious about the cause of death. However, when offering sympathy, there’s often no need to mention how the death occurred. Focus on the loss and bereavement of your family member or friend.

Here are some phrases to use when talking with someone who lost a child to drugs.

57. I am so sorry. Please know that you’re not alone; we stand with you in this sadness.

58. I’m always here for you. Let me know when you’re ready to talk.

59. I’m at a loss for words.

60. [Name] was a wonderful, kind person. I am better for having known him.

61. Share a positive story about the deceased.

Next, the death of a stepchild can bring complicated feelings to the forefront. Though family dynamics vary, step-parents often become a trusted part of the family. For some, these bonds are as strong as blood. Honor the step-parent-child relationship with a touching sympathy message. 

62. I’m so sorry to hear of your family’s loss. Though I didn’t know [Name] very well, I know how much you cherished your time together. 

63. Your stepchild, [Name], left us with so many beautiful memories. [He/she] was full of love and happiness. 

64. Good people often leave us too early. I hope your happy memories together bring your family comfort. 

65. I’m thinking of you as you navigate this difficult loss of your stepchild. 

66. I know you and [Name] were so close. It was clear [he/she] loved you dearly. 

67. The bonds of family aren’t broken in death. I know [Name] is with you now and always. 

68. Step-parents have a special place in our hearts. [His/her] memory is a beautiful one. 

69. Praying for you and your family during this time. 

70. Memories take the place of those we’ve lost, letting us keep them with us forever. 

71. It was always so inspirational to see the beautiful love you shared with your step [son/daughter]. This will always be a part of you. 

Last but not least, marriage is a way to bond families together. The loss of a daughter or son-in-law can be shocking and unexpected, often tilting the entire family off course. Honor this unique type of loss with a thoughtful condolence message. 

62. I am so sorry to hear of the loss of your [son/daughter]-in-law. May you find the courage to continue during these difficult times. 

63. I can’t imagine your family’s grief at the loss of [Name]. Please accept my condolences. 

64. Thinking of you and your [son/daughter] as you grieve [Name].

65. Your [son/daughter]-in-law was a beautiful person. I’ll never forget when…

66. I know the loss of your [son/daughter]-in-law was unexpected. Though I can’t imagine what you’re going through, know that I’m always here.

67. Your [son/daughter]-in-law was an amazing soul. I’ll never forget their smile. 

68. Though I only met [Name] at your [son/daughter]’s wedding, I know how much they belonged with your family. Thinking of you.

69. I always enjoyed my time spent with [Name]. I’ll remember them always. 

70. May your family find strength in your happy memories together. 

71. I’m saddened to hear of the sudden loss of your [son/daughter]-in-law. Their spirit touched so many lives. 

Though there are many places to share sympathy messages, it's important to choose what the recipient would appreciate the most. Here are several options to choose from.

Cake's online memorial 

An online memorial is a perfect place to share a sympathy message. Online memorials enable the memorial creator to collect messages, memories, tributes, and pictures in one place. They also stay online as long as the memorial creator would like them to, leaving a place for friends and family to visit year after year.

Cake offers a free online memorial tool with space for a full-length obituary, photograph, tribute page, and fundraiser tool to help with offsetting funeral expenses.

Social media

If the death is publicly known, social media can be a good place to share a condolence message. Respond to the death announcement directly, or create a separate post to share your words of sympathy with a friend or loved one.

Text message

A text message is ideal if you're unsure of whether posting on social media is appropriate. This is also a good option if you only want the recipient and no one else to read the message.

Support Someone Through Their Grief

Ultimately, you can’t always understand how someone experiences grief. It affects everyone differently. This is why you should use the right suggested sympathy messages to ensure your words are thoughtful and hit their mark. Remember, the more personal and heartfelt, the better.

Similarly, review the best sympathy gifts for parents who lost a child for more ideas. You can  support someone through this type of loss with compassion, a listening ear, and so much more. 

Categories:

• Loss Of Child

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• Open access
• Published: 13 September 2024

A qualitative study on reasons for women’s loss and resumption of Option B plus care in Ethiopia

• Wolde Facha   ORCID: orcid.org/0000-0002-7463-524X 1 ,
• Takele Tadesse 1 ,
• Eskinder Wolka 1 &
• Ayalew Astatkie 2  

Scientific Reports volume  14 , Article number:  21440 ( 2024 ) Cite this article

Metrics details

• Health care
• Medical research

Loss to follow-up (LTFU) from Option B plus, a lifelong antiretroviral therapy (ART) for pregnant women living with human immunodeficiency virus (HIV), irrespective of their clinical stage and CD4 count, threatens the elimination of vertical transmission of the virus from mothers to their infants. However, evidence on reasons for LTFU and resumption after LTFU to Option B plus care among women has been limited in Ethiopia. Therefore, this study explored why women were LTFU from the service and what made them resume or refuse resumption after LTFU in Ethiopia. An exploratory, descriptive qualitative study using 46 in-depth interviews was employed among purposely selected women who were lost from Option B plus care or resumed care after LTFU, health care providers, and mother support group (MSG) members working in the prevention of mother-to-child transmission unit. A thematic analysis using an inductive approach was used to analyze the data and build subthemes and themes. Open Code Version 4.03 software assists in data management, from open coding to developing themes and sub-themes. We found that low socioeconomic status, poor relationship with husband and/or family, lack of support from partners, family members, or government, HIV-related stigma, and discrimination, lack of awareness on HIV treatment and perceived drug side effects, religious belief, shortage of drug supply, inadequate service access, and fear of confidentiality breach by healthcare workers were major reasons for LTFU. Healthcare workers' dedication to tracing lost women, partner encouragement, and feeling sick prompted women to resume care after LTFU. This study highlighted financial burdens, partner violence, and societal and health service-related factors discouraged compliance to retention among women in Option B plus care in Ethiopia. Women's empowerment and partner engagement were of vital importance to retain them in care and eliminate vertical transmission of the virus among infants born to HIV-positive women.

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Introduction.

Lost to follow-up is a major challenge in the prevention of mother-to-child transmission (PMTCT) of HIV among HIV-exposed infants (HEI). Globally, about 1.5 million children under 15 years old were living with HIV, and 130,000 acquired the virus in 2022 1 . In the African region, an estimated 1.3 million children aged 0–14 were living with HIV at the end of 2022, and 109,000 children were newly infected 2 . Five out of six paediatric HIV infections occurred in sub-Saharan Africa in 2022 3 . Most of these infections are due to mother-to-child transmission (MTCT), accounting for around 90% of all new infections 4 , 5 . Without any intervention, between 15 and 45 percent of infants born to HIV-positive mothers are likely to acquire the virus from their mothers, with half dying before their second birthday without treatment 3 . Almost 70% of new HIV infections were due to mothers not receiving ART or dropping off during pregnancy or breastfeeding 3 .

In Ethiopia, the burden of MTCT of HIV is high, with a pooled prevalence ranging from 5.6% to 11.4% 6 , 7 , 8 , 9 , 10 . Ethiopia adopted the 2013 World Health Organization’s Option B plus recommendations as the preferred strategy for the PMTCT of HIV in 2013 11 , 12 , 13 , 14 . Accordingly, a combination of triple antiretroviral (ARV) drugs was provided for all HIV-infected pregnant and/or breastfeeding women, irrespective of their CD4 count and World Health Organization (WHO) clinical staging 11 , 13 . Besides, the drug type was switched from an EFV-based to a DTG-based regimen to enhance maternal life quality and decrease LTFU from Option B plus care 11 , 15 . The Efavirenz-based regimen consists of Tenofovir (TDF), Lamivudine (3TC), and Efavirenz (EFV), while the DTG-based regimen consists of TDF, 3TC, and DTG 13 , 15 , 16 . The change in regimen was due to better tolerability and rapid viral suppression, thereby retaining women in care and achieving MTCT of HIV targets 17 , 18 .

The trend of women accessing ART for PMTCT services increases, and new HIV infections decrease over time 3 , 19 , 20 . However, the effectiveness of Option B plus depends not only on service coverage but also on drug adherence and retention in care 4 , 15 , 21 . In this regard, quantitative studies conducted in Ethiopia showed that the prevalence of LTFU from Option B plus ranged from 4.2% to 18.2% 22 , 23 , 24 . Besides, the overall incidence of LTFU ranged from 9 to 9.4 per 1000 person-months of observation 25 , 26 , which is a challenge for the success of the program.

Qualitative studies also revealed that the main reasons for LTFU among women were maternal educational status, drug side effects, lack of partner and family support, lack of HIV status disclosure, poverty, discordant HIV test results, religious belief, stigma, and discrimination, long distance to the health facility, and history of poor adherence to ART 27 , 28 , 29 , 30 , 31 , 32 . Reasons for resumption to care were a decline in health status, a desire to have an uninfected child, and support from others 30 , 33 . Unless the above risk factors for LTFU are managed, the national plan to eliminate the MTCT of HIV by 2025 will not be achieved 34 .

Currently, because of its fewer side effects and better tolerability, a Dolutegravir (DTG)-based regimen is given as a preferred first-line regimen to pregnant and/or breastfeeding women to reduce the risk of LTFU 13 , 16 . The goal is to reduce new HIV transmissions and achieve Sustainable Development Goal (SDG) 3.3 of ending Acquired Immunodeficiency Syndrome (AIDS) as a public health threat by 2030 35 , 36 , 37 . As mentioned above, there is rich information on the prevalence and risk factors of LTFU among women on Option B plus care before the DTG-based regimen was implemented. Besides, the previous qualitative studies addressed the reasons for LTFU from providers’ and/or women’s perspectives rather than including mother support group (MSG) members. However, there was a lack of evidence that explored the reasons for LTFU and resumption of care after LTFU from the perspectives of MSG members, lost women, and healthcare workers (HCWs) providing care to women. Therefore, this study aimed to explore the reasons why women LTFU and resumed Option B plus care after the implementation of a DTG-based regimen in Ethiopia.

Materials and methods

Study design and setting.

An exploratory, descriptive qualitative study 38 was conducted between June and October 2023. This study was conducted in two regions of Ethiopia: Central Ethiopia and South Ethiopia. These neighbouring regions were formed on August 19, 2023, after the disintegration of the Southern Nations, Nationalities, and Peoples' Region after a successful referendum 39 . The authors included these nearby regions to get an adequate sample size and cover a wider geographic area. In these regions, 140 health facilities (49 hospitals and 91 health centers) provided PMTCT and ART services to 28,885 patients at the time of the study, of whom 1,236 were pregnant or breastfeeding women (675 in South Ethiopia and 561 in Central Ethiopia).

Participants and data collection

Study participants were women who were lost from PMTCT care or resumed PMTCT care after LTFU, MSG members, and HCWs provided PMTCT care. Mother support group members were HIV-positive women working in the PMTCT unit to share experiences and provide counselling services on breastfeeding, retention, and adherence, and to trace women when they lost Option B plus care 11 , 40 . Healthcare workers were nurses or midwives working in the PMTCT unit to deliver services to women enrolled in Option B plus care.

Purposive criterion sampling was employed to select study participants from twenty-one facilities (nine health centers and twelve hospitals) providing PMTCT service. A total of 46 participants were included in the study. The interview included 15 women (eleven lost and four resumed care after LTFU), 14 providers, and 17 MSG members. Healthcare workers and MSG members were chosen based on the length of time they spent engaging with women on Option B plus care; the higher the work experience, the more they were selected to get adequate information about the study participants. Including the study participants in each group continued until data saturation.

The principal investigator, with the help of HCWs and MSG members, identified lost women from the PMTCT registration books and appointment cards. A woman's status was recorded as LTFU if she missed the last clinic appointment for at least 28 days without documented death or transfer out to another facility 15 . Providers contacted women based on their addresses recorded during enrolment in Option B plus care, either via phone (if functional) or by conducting home visits for those unable to be reached. Informed written consent was obtained, and the research assistants conducted in-depth interviews at women’s homes or health facilities based on their preferences. After an interview, eleven women who lost care were counselled to resume PMTCT care, but nine returned to care and two refused to resume care. Besides, the principal investigator, HCWs, and MSG members identified women who resumed care after LTFU, called them via phone to visit the health facility at their convenience, and conducted the interview after obtaining consent. The research team covered transportation costs and provided adherence counselling to women post-interview. A woman resumed care if she came back to PMTCT care on her own or healthcare workers’ efforts after LTFU.

One-on-one, in-depth interviews were conducted with eligible MSG members and HCWs at respective health facilities. A semi-structured interview guide translated into the local language (Amharic) was used to collect data. The guide comprises the following constructs: why women are lost to follow-up from PMTCT care, what made them resume caring after LTFU, and why they did not resume Option B plus care after LTFU with probing questions (Supplementary File 1 ). The interview was conducted for 18 to 37 min with each participant, and the duration was communicated to study participants before the interview. The interview was audio-taped, and field notes were taken during the interviews.

Data management and analysis

Thematic analysis was used to analyze the data. The research assistants transcribed the interviews verbatim within 48 h of data collection and translated them from the local language (Amharic) to English for analysis. The principal investigator read the translated document several times to get a general sense of the content. An inductive approach was applied to allow the conceptual clustering of ideas and patterns to emerge. The authors preferred an inductive approach to analyze data since there were no pre-determined categories. The core meaning of the phrases and sentences relevant to the research aim was searched. Codes were assigned to the phrases and sentences in the transcript, which were later used to develop themes and subthemes. The subthemes were substantiated by quotes from the interviews. The interviews developed two themes: reasons for LTFU and the reasons for resumption after LTFU. The findings were triangulated from healthcare workers, MSG members, and client responses. Open code software version 4.03 was used to assist in data management, from open coding to the development themes and sub-themes.

Background characteristics of the study participants

We successfully interviewed 46 participants (14 providers, 15 women, and 17 MSG members) until data saturation. The mean (± standard deviation [SD]) of age was 25.53 (± 0.99) years for women, 32.5 (± 1.05) years for MSG members, and 32.2 (± 1.05) years for care providers. Three out of fifteen women did not disclose their HIV status to their partner, and 5/15 women’s partners were discordant. The mean (± SD) service years in the PMTCT unit were 10.3 (± 1.3) for MSG members and 3.29 (± 0.42) for care providers (Supplementary File 2 ).

Reasons for LTFU

Women who started ART to prevent MTCT of HIV were lost from care due to different reasons. Societal and individual-related factors and health facility-related factors were the two main dimensions that made women LTFU. The societal and individual-related factors were socioeconomic status, relations with husbands or families, lack of support, HIV-related stigma and discrimination, lack of awareness and perceived antiretroviral (ARV) side effects, and religious belief. Health facility-related factors such as lack of confidentiality, drug supply shortages, and inadequate service access led to women's loss from Option B plus care (Supplementary File 3 ).

Societal and individual-related factors

Socioeconomic status.

Lack of money to buy food was a major identified problem for women’s LTFU. Women who did not have adequate food to eat became undernourished, which significantly increased the risk of LTFU. Besides, they did not want to swallow ARV drugs with an empty stomach and thus did not visit health facilities to collect their drugs.

“My life is miserable. I have nothing to eat at my home. How would I take the drug on an empty stomach? Let the disease kill me rather than die due to hunger. This is why I stopped to take the medicine and LTFU.” (W-02, 30-year-old woman, divorced, daily labourer)

Women also disappeared from PMTCT care due to a lack of money to cover transportation costs to reach health facilities.

I need a lot of money to pay for transportation that I can’t afford. Sometimes I came to the hospital borrowing money for transportation. It is challenging to attend a follow-up schedule regularly to collect ART medications.” (W-11, 26-year-old woman, married, housewife)

Relationships with husbands and/or families

Fear of violence and divorce by sexual partners were identified as major reasons for the LTFU of women from PMTCT care. Due to fear of partner violence and divorce, women did not want to be seen by their partners while visiting health facilities for Option B plus care and swallowing ARV drugs. As a result, they missed clinic appointments, did not swallow the drugs, and consequently lost care.

“Due to discordant test results, my husband divorced me. Then I went to my mother's home with my child. I haven’t returned to take the drug since then and have lost PMTCT care.” (W-03, 25-year-old woman, divorced, commercial sex worker)

Women did not disclose their HIV status to their discordant sexual partners and family members due to fear of stigma and discrimination. As a result, they did not swallow drugs in front of others and were unable to collect the drugs from health facilities.

“I know a mother who picked up her drugs on market day as if she came to the market to buy goods. No one knows her status. She hides the drug and swallows it when her husband sleeps.” (P-05, 29-year-old provider, female, 3 years of experience in the PMTCT unit) “I don't want to be seen at the ART unit. I have no reason to convince the discordant husband to visit a health facility after delivery. My husband kills me if he knows that I am living with HIV. This is why I discontinued the care.” (W-12, 18-year-old woman, married, housewife)

Women who lack partner support in caring for children at home during visits to health facilities find it difficult to adhere to clinic visits. Besides, women who did not get financial and psychological support from their partners faced difficulties in retaining care.

“Taking care of children is not business for my husband. How could I leave my two children alone at home? Or can I bring them biting with my teeth?” (W-05, 24-year-old woman, divorced, daily labourer) “ I didn't get any financial or psychological support from my husband. This made me drop PMTCT care.” (W-15, 34-year-old woman, married, daily labourer) Lack of support

Women living with HIV also had complaints of lack of support from the government, non-governmental organizations (NGOs), and HIV-related associations in cash and in kind. As a result, they were disappointed to remain in care.

"Previously, we got financial and material support from NGOs. Besides, the government arranged places for material production and goods sale to improve our economic status. However, now we didn't get any support from anywhere. This made our lives hectic to retain PMTCT care.” (W-06, 29-year-old woman, married, daily labourer)

HIV-related stigma and discrimination

Fear of stigma and discrimination by sexual partners, family members, and the community were mentioned as reasons for LTFU. Gossip, isolation, and rejection from societal activities were the dominant stigma experiences the women encountered. As a result, they did not want to be seen by others who knew them while collecting ARV drugs from health facilities, and consequently, they were lost from care and treatment.

“Despite getting PMTCT service at the nearby facility, some women come to our hospital traveling long distances. They don't want to be seen by others while taking ARV drugs there due to fear of stigma and discrimination by the community.” (P-10, 34-year-old provider, female, 2 years of experience in the PMTCT unit) “I am a daily labourer and bake ‘injera’ (a favourite food in Ethiopia) at someone's house to run my life. If the owner knew my status, I am sure she would not allow me to continue the job. In that case, what would I give my child to eat?” (W-12, 18-year-old woman, married, housewife) “My family did not know that I was living with the virus. If they knew it, I am sure they would not allow me to contact them during any events. Thus, I am afraid of telling them that I had the virus in my blood.” (W-05, 24-year-old woman, divorced, daily labourer)

Lack of awareness and perceived ARV side effects

Sometimes women went to another area for different reasons without taking ARV drugs with them. As per the Ethiopian national treatment guidelines 13 , they could get the drugs temporarily from any nearby facility that delivers PMTCT service. However, those who did not know that they could get the drugs from other nearby PMTCT facilities lost their care until their return. Others were lost, considering that ARV drugs harm the health status of their babies.

“One mother refused to retain in care after the delivery of a congenitally malformed baby (no hands at birth). She said, 'This abnormal child was born due to the drug I was taking for HIV. I delivered two healthy children before taking this medication. I don't want to re-use the drug that made me give birth to a malformed baby." (P-14, 32-year-old provider, female, 4 years of experience in the PMTCT unit)

When they did not encounter any health problems, women were lost from care, considering that they had become healthy and not in need of ART. Some of them also believe that having HIV is a result of sin, not a disease. Besides, some women believed that it was not possible to have a discordant test result with their partner.

“I didn't commit any sexual practice other than with my husband. His test result is negative. So, from where did I get the virus? I don't want to take the drug again.” (W-02, 30-year-old woman, divorced, daily labourer)

Religious belief

Some study participants mentioned religious belief as a reason for LTFU and a barrier to resumption after LTFU. Women discontinued Option B plus care due to their religious faith and refused to resume care as they were cured by the Holy Water and prayer by religious leaders.

“I went to Holy Water and was there for two months. My health status resumed due to prayer by monks and priests there. Despite not taking the drugs during my stay, God cured me of this evil disease with Holy Water. Now I am healthy, and there is no need to take the medicine again.” (W-09, 25-year-old woman, married, daily labourer)

Some women believed that God cured them and made their children free of the virus despite not taking ART for themselves and not giving ARV prophylaxis for their infants.

“Don't raise this issue again (when MSG asked to resume PMTCT care). I don't want to use the medicine. I am cured of the disease by the word of God, and my child is too. My God did not lie in His word.” (MSG-16, 32-year-old MSG, married, 16 years of service experience “Don't come to my home again. I don't have the virus now. I have been praying for it, and God cured me.” (W-03, 25-year-old woman, divorced, commercial sex worker)

Health facility-related factors

Shortage of drug supply.

Women were not provided with all HIV-related services free of charge and were required to pay for therapeutic and prophylactic drugs for themselves and their infants. Most facilities face a shortage of prophylactic drugs, primarily cotrimoxazole and nevirapine syrups, for infants and women, and other drugs used to treat opportunistic infections. As a result, women lost their PMTCT care when told to buy prophylactic syrups for infants and therapeutic drugs to treat opportunistic infections for themselves.

“Lack of cotrimoxazole syrup is one of the major reasons for women to miss PMTCT clinic visits. In our facility, it was out of stock for the last three months. Women can't afford its cost due to their economic problems.” (MSG-03, 34-year-old provider, married, 12 years of service experience)

Inadequate service access

Most women travelled long distances to reach health facilities to get PMTCT service due to the absence of a PMTCT site in their area. Due to a lack of transportation access and/or cost, they were forced to miss clinic visits for PMTCT care.

“In this district, there were only two PMTCT sites. Women travelled long distances to get the service. To reach our facility, they must travel half a day or pay more than three hundred Ethiopian birr for a motorbike that some cannot afford. Thus, women lost the service due to inadequate service access.” (P-06, 30-year-old provider, male, 2 years of experience in the PMTCT unit)

In almost all facilities, PMTCT service was not given on weekends and holidays, despite women's interest in being served at these times. When ARV drugs were stocked out at their homes, they did not get the drugs if facilities were not providing services on weekends and holidays. When appointment date was passed, they lost care due to fear of health workers’ reactions.

Lack of confidentiality

Despite maintaining ethical principles to retain women in care, breaches of confidentiality by HCWs were one of the reasons for LTFU by women. Women were afraid of meeting someone they knew or that their privacy would not be respected. As a result, they lost from PMTCT care.

“I don’t want to visit the facility. All my information was distributed to the community by a HCW who counselled me at the antenatal clinic.” (W-09, 25-year-old woman, married, daily labourer)

Reasons for resumption after LTFU

Healthcare workers' commitment to searching for lost women, partners’ encouragement, and women’s health status were key reasons for resuming women's Option B plus services after LTFU.

Healthcare workers’ commitment

The majority of lost women resumed Option B plus care after LTFU when healthcare workers called them via phone or conducted home visits for those who could not be reached by phone call.

“We went to a woman’s home, who started ART during delivery and lost for four months, travelling about 90 kilometers. She just cried when she saw us. She said, 'As long as you sacrificed your time traveling such a long distance to return me and save my life, I will never disappear from care today onward.' Then, she returned immediately and was linked to the ART unit after completing her PMTCT program.” (P-13, 32-year-old provider, male, 5 years of experience in the PMTCT unit) “We have an appointment date registry for every woman. We waited for them for seven days after they failed to arrive on the scheduled appointment date. From the 8th day onward, we called them via phone if it was available and functional. If we didn't find them via phone, we conducted home visits and returned them to care.” (P-02, 24-year-old provider, female, 3 years of experience in the PMTCT unit)

Partner encouragement

Women who got their partners' encouragement did not drop out of PMTCT care. Besides, most women returned to care and restarted their ARV drugs due to partner encouragement.

“I did not disclose my HIV status to my husband, which was diagnosed during the antenatal period. I lost my care after the delivery of a male baby. When my husband knew my status, rather than disagreeing, he encouraged me to resume the care to live healthily and to prevent the transmission of HIV to our baby. This was why I resumed care after LTFU.” (W-14, 28-year-old woman, divorced, daily labourer)

Women’s health status

Some women returned to Option B plus care on their own when they felt sick and wanted to stay healthy.

“When I felt healthy, I was away from care for about eight months. Later on, when I sought medical care for the illness, doctors gave me medicine and linked me to this unit (the PMTCT unit). I returned because of sickness.” (W-06, 29-year-old woman, married, daily labourer)

This qualitative study assessed the reasons why women left the service and why they resumed care after LTFU. The study aimed to enhance program implementation by providing insights into reasons for LTFU and facilitators for resumption from women's, health professionals', and MSG members' perspectives. We found that financial problems, partner violence, lack of support, HIV-related stigma and discrimination, lack of awareness, religious belief, shortage of drug supply, poor access to health services, and fear of confidentiality breaches by healthcare providers were major reasons for LTFU from PMTCT care. Healthcare workers’ commitment, partner encouragement, and feeling sick made women resume PMTCT care after LTFU.

In this study, fear of partner violence and divorce were identified as major reasons that made women discontinue the PMTCT service. Men are the primary decision-makers regarding healthcare service utilization, and the lack of male involvement in the continuity of PMTCT care decreases maternal health service utilization, including PMTCT services 41 , 42 . In addition, economic dependence on men threatened women not to adhere to clinic appointments without their partner’s willingness due to fear of violence and divorce 28 . Thus, strengthening couple counselling and testing 13 , male involvement in maternal health services, and women empowerment strategies like promoting education, property ownership, and authority sharing to reach decisions on health service utilization were crucial to retaining women in PMTCT care. Besides, legal authorities and community and religious leaders should be involved in preventing domestic violence and raising awareness about the negative effects of divorce on child health.

Financial constraints to cover daily expenses were major reasons expressed by women for LTFU from PMTCT care. Consistent with other studies, this study revealed that a lack of money to cover transportation costs resulted in poor adherence to ART and subsequent loss of PMTCT care 27 , 29 , 43 . As evidenced by other studies, lack of food resulting from financial problems was a major reason for LTFU in the study area 30 . As a result, women prefer death to living with hunger due to food scarcity, which led them to LTFU. Besides, women of poor economic status spent more time on jobs to get money to cover day-to-day expenses than thinking of appointment dates. Thus, governments and organizations working on HIV prevention programs should strengthen economic empowerment programs like arranging loans to start businesses and creating job opportunities for women living with HIV.

Despite continuous information dissemination via different media, fear of stigma and discrimination was a frequently reported reason for LTFU among women in PMTCT care. Consistent with other studies conducted in Ethiopia and other African countries, our study identified that fear of stigma and discrimination by partners, family, and community members are significant risk factors for LTFU 27 , 28 , 29 , 31 . As a result, women did not usually disclose their HIV status to their partners 28 , 32 so that they could not get financial and psychological support. This highlights the need to intensify interventions by different stakeholders to reduce HIV-related stigma and discrimination in the study area. Women's associations, community-based organizations, and religious, community, and political leaders should continuously work on advocacy and awareness creation to combat HIV-related stigma and discrimination.

Our study revealed that a lack of support for women made them discontinue life-saving ARV drugs. In developing countries like Ethiopia, most women living with HIV have low socio-economic status to run their lives, and thus they need support. However, as claimed by the majority of study participants, the government and organizations working on HIV programs were decreasing support from time to time. This was in line with qualitative studies such that lack of support by family members or partners 27 was identified as a barrier to adherence to and retention in PMTCT care 27 , 28 , 29 , 30 , 32 . Organizations working on HIV programs need to design strategies so that poor women get support from partners, family members, the community, religious leaders, and the government to stay in PMTCT care. Moreover, some women thought incentives and support must be given to retain them in Option B plus care. Thus, HCWs should inform women during counselling sessions that they should not link getting PMTCT care to incentives or support.

Women infected with HIV want to be healthy and have HIV-free infants, which could be achieved by proper utilization of recommended therapy as per the protocol 27 , 43 . However, women’s religious beliefs were found to interfere with adherence to the recommended treatment protocol, made them LTFU, and refused resumption after LTFU. Although religious belief did not oppose the use of ARV drugs at any time, women did not take the medicine when they went to Holy Water and prayer. As evidenced by previous studies, lost women perceived that they were cured of the disease with the help of God and refused to resume PMTCT care 27 , 30 . This finding suggests the need for sustained community sensitization about HIV and its treatment, engaging religious leaders. They need to inform women on ART that taking ARV drugs does not contradict religious preaching, and they should not discontinue the drug at any religious engagement.

Once on ART, women should not regress from care and treatment due to problems related to the facility. Unlike the study conducted in Malawi, which reported a shortage of drugs as not a cause of LTFU 29 , in the study area there was a shortage of drugs and supplies to give appropriate care to women and their infants and to retain them in care. They did not get all services related to HIV free of charge and were requested to pay for them, including the cotrimoxazole syrup given to their infants. The finding was consistent with the study conducted in Malawi, where the irregular availability of cotrimoxazole syrup was mentioned as a risk factor for LTFU 32 .

On some occasions, there may also be a shortage of ARV prophylaxis (Nevirapine and Zidovudine syrups) at some facilities for their infants that they couldn’t get from private pharmacies. Services related to PMTCT care were expected to be free of charge for mothers and their infants throughout the care. Ensuring an adequate supply of prophylactic and therapeutic drugs should be considered to prevent the MTCT of HIV and control the spread of the disease among communities via appropriate resource allocation. Facilities should have an adequate supply of ARV prophylaxis and should not request that women pay for diagnostic services. Besides, they always need to provide cotrimoxazole syrup free of charge for HIV-exposed infants.

Lack of awareness of a continuum of PMTCT care among women is a major challenge to retaining them in care. Women who experienced malpractice against standard care practice and had misconceptions about the disease were at higher risk for LTFU. Those women who forgot to take ARV drugs due to different reasons (maybe due to poor counselling) did not get the benefits of ART. Improved counselling and appropriate patient-provider interaction increase women’s engagement in care and reduce the risk of LTFU 28 , 44 . Thus, proper counselling on adherence, malpractice, and misconceptions should be strengthened by healthcare providers in PMTCT units to create optimal awareness for retention.

Maintaining clients’ confidentiality is the backbone of achieving HIV-related treatment goals. However, some women disappear from PMTCT care due to a lack of confidentiality by HCWs delivering the service. Although not large, women claimed a lack of privacy during counselling, and disclosing their HIV status in the community was practiced by some healthcare professionals. The finding was consistent with the study conducted in developing countries, including Ethiopia, where lack of privacy and fear regarding breaches of confidentiality by healthcare workers were identified as risk factors for LTFU 31 , 32 , 44 . Thus, HCWs should deliver appropriate counselling services and maintain clients’ confidentiality to develop trust among women.

The validity of the findings of this study was strengthened by the triangulating data collected from women, MSG members, and HCWs delivering PMTCT service. Besides, the study included women from the community who had already been lost from care during the study, which minimized the risk of recall bias. However, we recognized the following limitations. First, the study did not explore the husband’s perspective to validate the findings from women and HCWs. Second, the study may have different reasons for LTFU for women who were unreached or unwilling to participate compared to those who agreed to be interviewed. Thus, further studies are advised to include the husband’s perception to validate their concern and to address all women who have lost care.

Conclusions

Financial constraints to cover transportation costs, fear of partner divorce and violence, HIV-related stigma and discrimination, lack of psychological support, religious belief, shortage of drug supply, inadequate service access, and breach of confidentiality by HCWs were major reasons for women’s lost. Healthcare workers’ commitment to searching for lost women, partners’ encouragement to resume care, and women’s desire to live healthily were explored as reasons for resumption after LTFU. Women empowerment, partner engagement, involving community and religious leaders, awareness creation on the effect of HIV-related stigma and discrimination for the community, and service delivery as per the protocol were of vital importance to retain women on care and resume care after LTFU. Besides, HCWs should address false beliefs related to the disease during counseling sessions to retain women in care.

Data availability

All data generated or analysed during this study are included in this article and its Supplementary Information files.

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Acknowledgements

The authors acknowledge the staff of the South Ethiopia and Central Ethiopia Regional Health Bureaus for their technical and logistic support. Moreover, the authors sincerely thank the research assistants who translated and transcribed the interview. The authors would also like to thank the study participants who were involved in the study.

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Department of Epidemiology and Biostatistics, School of Public Health, College of Health Sciences and Medicine, Wolaita Sodo University, Wolaita Sodo, Ethiopia

Wolde Facha, Takele Tadesse & Eskinder Wolka

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W.F. was involved in the study's conception, design, execution, data acquisition, analysis, interpretation, and manuscript drafting. T.T., E.W., and A.A. were involved in the project concept, guidance, and critical review of the article. All the authors have reviewed and approved the final manuscript and agreed to publish it in scientific reports.

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The study protocol was reviewed and approved by the Institutional Review Board (IRB) of Wolaita Sodo University (ethical approval number WSU41/32/223). The study was carried out following relevant legislation and ethics guidelines. Written informed consent was obtained from all participants before an interview, and interviewee anonymity was guaranteed.

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Facha, W., Tadesse, T., Wolka, E. et al. A qualitative study on reasons for women’s loss and resumption of Option B plus care in Ethiopia. Sci Rep 14 , 21440 (2024). https://doi.org/10.1038/s41598-024-71252-2

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Received : 17 April 2024

Accepted : 26 August 2024

Published : 13 September 2024

DOI : https://doi.org/10.1038/s41598-024-71252-2

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