primary research study on the lived experience of caring

• Search Menu
• Sign in through your institution
• Advance articles
• Themed Collections
• Editor's Choice
• Ilona Kickbusch Award
• Supplements
• Author Guidelines
• Submission Online
• Open Access Option
• Self-Archiving Policy
• About Health Promotion International
• Editorial Board
• Advertising and Corporate Services
• Journals on Oxford Academic
• Books on Oxford Academic

Article Contents

Introduction, discussion and conclusion.

• < Previous

The impact of caring for family members with mental illnesses on the caregiver: a scoping review

• Article contents
• Figures & tables
• Supplementary Data

Rita Phillips, Mark Durkin, Hilary Engward, Graham Cable, Maria Iancu, The impact of caring for family members with mental illnesses on the caregiver: a scoping review, Health Promotion International , Volume 38, Issue 3, June 2023, daac049, https://doi.org/10.1093/heapro/daac049

• Permissions Icon Permissions

A large number of multidisciplinary, qualitative and quantitative research suggests that providing care for family members with mental health illnesses can have both positive and negative effects on the carers’ wellbeing. However, to date a comprehensive overview and synthesis of literature that compares and contrasts positive and negative effects of family-caregiving on the carer is missing. To address this gap, this scoping review examines the effects of family-caregiving on carers’ wellbeing. A Boolean search generated a total of 92 relevant articles that were included in the analysis. The results suggest that, to understand the effects of family-caregiving on the carer’s mental and physical wellbeing, it is necessary to take a combination of situational and sociodemographic characteristics into consideration. Elderly, female, spousal-carers and primary-carers may be a group that is at risk of suffering from a lack of positive mental and physical wellbeing as a result of caring. However, the negative effects of caregiving can be balanced by extraversion, social support and religious or spiritual beliefs. Therefore, future interventions that aim to promote family caregivers’ wellbeing may need to take personality, particular circumstances as well as cultural and personal beliefs into consideration.

According to recent studies, an increasing number of people experience mental health disorders ( Fernando, 2014 ; Bruffaerts et al. , 2015 ; Polanczyk et al. , 2015 ; Hanna et al. , 2018 ). Due to a global deinstitutionalization of the treatment of mental illnesses, only a low proportion of those suffering from mental illnesses are admitted to hospitals ( WHO, 2017 ). Of those who are hospitalized, ∼30–50% experience a relapse of symptoms within the first 6 months and 50–70% in the first 5 years after being discharged ( Chang and Chou, 2015 ; Ali et al. , 2017 ; Sadock et al. , 2017 ). Comorbidity with other mental illness, non-adherence to medication, shorter duration on treatment and experiencing stressful life events as well as high disability score, and a single admission history are significant predictors of mental health relapse ( Agenagnew and Kassaw, 2020 ; Moges et al. , 2021 ). Patients with psychotic disorders who also experience common mental health disorders such as depression and anxiety are more likely to experience a relapse ( Ali et al. , 2017 ; Moges et al. , 2021 ). Some novel approaches such as receiving low-intensity personalized advice via text-messages post-treatment ( Malins et al. , 2020 ) and specific forms of therapy such as Acceptance and Commitment Therapy ( Østergaard, 2020 ), mind–body relaxation and therapies that allow the patient to develop healthy coping skills ( Melemis, 2015 ) can be particularly beneficial in relapse prevention. However, as family and spousal carers live with patients and are usually the first to recognize behavioural changes, they play an increasingly important role in supporting and rehabilitating those who suffer from mental health illnesses.

The challenges that family members who care for those with mental health illnesses face are well documented in the literature. Family caregivers are at an increased risk of suffering physically, psychologically and socially while providing care for family members with mental health conditions ( Sharma et al., 2016 ; Akbari et al. , 2018 ; Norris et al. , 2018 ; Özgönül and Bademli, 2022 ). Specifically, studies have shown that caring for family members with mental health problems can lead to social isolation, financial difficulties, occupational restrictions and negative emotions such as anger, aggression, frustration, low self-esteem, constant worry and feelings of helplessness ( van der Sanden et al. , 2013 , 2015 ; Yin et al. , 2014 ; Lamont and Dickens, 2021 ). In addition, there is an increased risk of reduced life-expectancy, lower wellbeing and mastery of life skills, and less time spent doing leisure activities for family caregivers ( Akbari et al. , 2018 ; Hsiao et al. , 2020 ; McKee, 2020 ; Dadalto and Cavalcante, 2021 ).

Yet, research also shows that caring for a family member may also affect the caregivers in positive ways ( Roth et al. , 2015 ). For example, literature suggests that some family carers can become more resilient over time ( Crellin et al. , 2014 ; Donnellan et al. , 2015 ; Ong et al. , 2018 ; Post et al. , 2021 ). While there are different definitions for caregiver resilience in the literature, they all share similar descriptions for the characteristics for overcoming adversity. This is explained as not only being about surviving the burden associated with caring for a mentally ill family member, but also growing into a stronger, more adaptable and healthier person ( Amagai et al. , 2016 ; Pione et al. , 2021 ). In addition, family caregiving can improve the relationship between the caregiver and the person they care for, while also providing a sense of inner strength and satisfaction ( Kate et al. , 2013 ; Roth et al. , 2015 ; Grover et al. , 2017 ; Shiraishi and Reilly, 2019 ).

While previous research examined possible challenges and advantages of caring for family members with mental health problems, a comprehensive overview and synthesis of the literature appears to be missing. This is problematic, as there is a need to understand the unique challenges that family carers face and determine possible sources of help and support that would allow for implementation of informed strategies to meet the carers’ needs. The present study addresses this gap by reviewing empirical studies and scientific evidence to capture both the challenges and positive aspects of caregiving in the family context.

A scoping review was used to synthesize the relevant literature on family caregiving ( Arksey and O’Malley, 2005 ; Levac et al. , 2010 ). Scoping reviews are a ‘useful way of mapping fields of study where it is difficult to visualize the range of material that might be available’ [( Arksey and O’Malley, 2005 ), p. 21]. They allow for a synthesis of the literature across different academic disciplines. This technique was relevant to the present study as empirical inquiry surrounding positive and negative effects of family caregiving are the subject of interest in various disciplines. For example, clinical studies might examine the physical and mental health effects of family caregiving, and psychological studies observe the severity of caregiver burden or changes in identity formation, whereas sociological studies tend to focus on the effects of family caregiving on social structures such as families or friendship networks. A scoping review utilizes a rigorous methodological framework consisting of five steps, which includes contributions from several disciplines. It maps the terrain of existing research and highlights gaps in knowledge ( Arksey and O’Malley, 2005 ; Levac et al. , 2010 ). As a method for reviewing literature, scoping studies have distinct characteristics ( Arksey and O’Malley, 2005 ). Unlike systematic reviews, they address broader topics and topic areas in which many different study designs might be applicable ( Arksey and O’Malley, 2005 ). Therefore, this approach was suitable to identify relevant themes in family caregiving in relation to caregiver health and wellbeing. The present study utilized Arksey and O’Malley’s ( Arksey and O’Malley, 2005 ) five-step protocol of scoping reviews because this is one of the most frequently utilized and published frameworks in scoping review literature (i.e. Abraham et al. , 2010 ; Halas et al. , 2015 ; O’Flaherty and Phillips, 2015 ; O’Brien et al. , 2016 ; Walsh et al. , 2019 ). The five steps include: (i) identifying the research question, (ii) identifying relevant studies, (iii) study selection, (iv) charting the data and (v) collating, summarizing and reporting the results. Each step is outlined in more detail below.

Step 1: Identifying the research question

“How does family caregiving affect the caregiver physically, mentally and socially?” and “How can family carers be best supported?”.

Step 2: Identifying relevant studies

Guidelines concerning the identification of the literature in scoping reviews, include the development of search terms, identification of databases, and the establishment of time frames, were followed ( Levac et al. , 2010 ). Therefore, the present review drew on a broad interpretation of search strings related to family caring and wellbeing. The social and health sciences databases APA Psych Articles, Web of Science, Science Direct, Scopus, Springer Link, SAGE Discipline Hub: Psychology and Counselling, Medline, SocINDEX, CINAHL and PTSDpubs were accessed. Additional studies were identified by manual searching the reference lists of the reviewed articles. The selection of articles was limited to peer-reviewed, English-language empirical studies published between January 2001 and March 2021 to ensure the recency of empirical evidence. Databases were searched by combining the search strings on family caregiving and the physical, mental and social consequences of caring. The key words were ‘Mental Health’ with the search strings ‘Mental health problem*’, ‘Mental health issue*’, ‘Ill-mental health’, ‘Mental health disorder*’, ‘Mental Distress’ and ‘Family Care’ with the search strings ‘Spousal carer*/ing’, ‘Informal care*/caring’, ‘Family care*/caring’, ‘Unpaid care*/caring’, ‘Care for family members with –’, ‘Support of family members with’ (cf. Table 1 ).

Key words and search strings

Step 3: Study selection

Decisions surrounding the inclusion and exclusion of studies in a scoping review rely upon an iterative and collaborative process involving all members of the researcher team ( Levac et al. , 2010 ). To address this we used the Preferred Reporting Items for Systematic Reviews flow diagram (cf. Figure 1 ; Moher et al. , 2009 ). Databases were searched with a combination of search strings and Boolean operators to ensure the inclusion of at least one search string from the terms listed in Table 1 . Both qualitative and quantitative studies were included. The exclusion criteria were the publication being an editorial or review article, studies with a primary focus on the care receiver and not the family carer, the patient being a child or adolescent (under 18 years of age) and studies about caring for physical health disorders. Editorial and review articles were examined to ensure the complete retrieval of relevant primary research noted therein.

PRISMA flow diagram (cf. Moher et al. , 2009 ).

Step 4: Charting the data

In scoping reviews, charting the data involves reviewing, documenting and sorting the information that was retrieved in accordance with the key issues and themes ( Arksey and O’Malley, 2005 ). An Excel spreadsheet was used to extract, document and organize the relevant information from each reviewed article ( Levac et al. , 2010 ). The spreadsheet included separate columns for article title, authors, database from which the article was drawn, the population and social-cultural background, mental illness of the patient whom family carers supported, methodological framework, instruments used in the study, method of analysis, main findings, implications and any additional information (e.g. screenshots of tables and figures).

Step 5: Collating, summarizing and reporting the results

The articles were read independently by members of the research team and topics relevant to the purpose of the review were identified. The research team compared, summarized and collated the identified preliminary themes. The data were then re-examined and reorganized to reflect deeper and more nuanced perspectives of the studies’ findings. Based on common meanings and central issues, the findings for each study were organized and integrated into categories and themes to highlight prevalent issues and gaps in knowledge. The research team commenced with collating, summarizing and reporting the results in April 2021 and concluded this step in August 2021.

Boolean searches including the string search terms generated a total output of 736 articles. From these 736 articles, 83 were excluded as they were duplicates. The research team examined the remaining 653 articles for inclusion/exclusion independently. Concordance in interrater reliability was high with the researcher team agreeing on inclusion and exclusion of 646 of the 653 articles (98.93%). Arguments for inclusion or exclusion of the remaining seven articles (1.07%) were discussed and consensus on inclusion/exclusion was reached before commencing with further analyses. The initial screening involved reading the abstracts and skimming the tests, which identified 281 articles that could potentially qualify for inclusion in the review. These 281 articles were read in detail. From the 231 articles, a total of 189 were excluded from further review, based on the exclusion criteria (cf. Table 1 ). Therefore, a total of 92 studies were included in the present review, of which 14 were qualitative and 78 were quantitative studies. Most studies focussed on American or British participants. Other countries represented were Australia, Canada, Chile, China, Colombia, Cyprus, Finland, Germany, Greece, India, Iran, Ireland, Italy, Japan, Malaysia, Malta, New Zealand, Norway, Portugal, Saudi Arabia, Spain and the Netherlands. Various mental health conditions were present in this review, the highest proportion being articles concerning family carers’ experiences with dementia (38 articles, 41.3%), followed by family carer’s experiences handling multiple and/or various mental health conditions (25 articles, 27.18%) and Alzheimer disease (13 articles, 14.13%). A smaller number of articles discussed family carers’ experiences with depression (3 articles, 3.26%), polytrauma in relation to traumatic brain injury (TBI; 3 articles, 3.26%), schizophrenia (2 articles, 2.17%), suicidal ideation (2 articles, 2.17%), post traumatic stress disorder (PTSD; 2 articles, 2.17%), psychosis (1 article, 1.09%), Parkinson disease psychosis (1 article, 1.09%), Postpartum psychiatric disorder (1 article, 1.09%) and bipolar disorder (1 article, 1.09%). An overview of the studies included in the review can be found in Table 2 .

Table of articles and papers included in the analysis

As outlined in Table 3 , the review identified three main themes: (i) Negative Implications of Caring for Family Members with Mental Health Diseases, (ii) Positive Implications of Caring for Family Members with Mental Health Diseases and (iii) Moderating Factors that can Contribute to the Family Carer’s Wellbeing. We now discuss these three themes in more detail.

Summary of themes and key results

Negative implications of caring for family members with mental health diseases

A major theme was the negative impact on the family caregiver’s physical and mental health. Most of the articles included in this review examined clinical levels of psychological distress in family carers (33.7%; 31 studies) and depression and depressive symptoms in relation to family caregiving (21.17%, 20 studies). This indicates that providing primary care for family members can have problematic consequences on the carers’ wellbeing. For example, Mausbach et al. (Mausbach et al. , 2014 ) conducted a longitudinal study comparing the individual experiences of 126 spousal carers for Alzheimer patients. The placement of the care receiver into care homes was associated with significant reductions in depressive symptoms, activity restriction and an increase in personal mastery in caregivers. These results are supported by studies that examined levels of psychological distress and depressive symptoms in primary and secondary caregivers across different mental health diseases and different cultures [i.e. ( Colvez et al., 2002 ; Gonçalves-Pereira et al. , 2020 ; Zwar et al. , 2020 )].

However, while primary care for family members can have negative consequences on carer wellbeing, sociodemographic factors can also determine the extent to which individuals may be affected by such negative consequences. For example, 32 (34.78%) of the reviewed studies indicated that gender significantly impacts on the care givers self-perceived burden of care. The results from these studies are consistent in suggesting that female family caregivers experience higher levels of psychological distress, shame and caregiver burden [i.e. ( Pattanayak et al. , 2010 ; Chiang et al. , 2015 ; Gresswell et al. , 2018 ; Avdikou et al. , 2019 ; Brites et al. , 2020 )]. This trend was evident across different cultures and applied to various mental health disorders equally ( Papastavrou et al. , 2009 ; Nordtug and Holen, 2011 ; Pöysti et al. , 2012 ). In addition, if wives cared for their husbands, they experienced lower marital satisfaction, while the opposite effect was observed in husbands caring for their wives ( Beeson, 2003 ; Dahlberg et al. , 2007 ; Lai, 2012 ; Choi, 2018 ). The literature around this phenomenon suggests that women feel more responsible for providing care and as a result are left with multiple competing roles ( Calasanti and Bowen, 2006 ; Dahlberg et al. , 2007 ). Women are therefore more likely to experience a loss of self and loneliness when caring for a family member making them more susceptible to caregiver depression, whereas men are more comfortable with letting others assume the carer role, and are more self-reliant on themselves and others to provide social support ( Calasanti and Bowen, 2006 ; Brown and Chen, 2008 ; Sun et al. , 2008 ; Ruisoto et al. , 2020 ).

The role of the carer and their relationship with the care-receiver was also found to impact on individual wellbeing. Specifically, research suggests that close ties such as being a spouse and/or living together with a mentally ill person in an acute setting determines the caregiver’s experiences of burden of care. For example, in their quantitative study with 455 close relatives, found that burden was particularly high among spouses, as they feel more isolated and have less leisure time than other family carers. In addition, findings suggest that spouses who care for partners with mental health disorders are exposed to additional stressors that originate from an internal conflict of roles were they are perceived to ‘hold it all together’ in their relationship [( Casarez et al. , 2019 ), p. 393]. In this sense, spouses need to handle challenging behaviours such as reckless spending or rageful and hypercritical behaviour, minimizing any issues that might arise during social encounters ( Casarez et al. , 2019 ). Besides the emotional burden, spousal carers may also experience financial difficulties as they often give up their work to care for their loved ones. This poses additional problems as financial uncertainty contributes to clinically significant levels of distress, caregiver burden and depression among family carers ( Lai, 2012 ; Abu Bakar et al. , 2014 ; Temple and Dow, 2018 ; Wayland et al. , 2021 ). Therefore, spouses may be at risk of compromising their own wellbeing when delivering primary care, due to greater emotional and financial strain.

Another key determinant in the prediction of family carer’s wellbeing is age. Studies in this review suggest that challenging experiences in relation to family caring were perceived to be more difficult or worse for older carers ( Chiang et al. , 2015 ; Chow and Ho, 2015 : Tsai et al. , 2021 ). Essentially, elderly family carers may not understand mental health issues or have the stamina required to overcome the challenges of caring, for example accessing formal support ( Chiang et al. , 2015 ; Greenwood et al. , 2019 ). In addition, their own health conditions can compromise the ability to perform physical tasks, and thus diminish their social circle. Potential sources of social support can also decrease with age, while their own health conditions can make it harder to leave their home, and engage in leisure activities or make new friends.

Positive implications of caring for family members with mental health diseases

While most literature examines the negative psychological and physical consequences of caregiving on the carer, there is an increasing emphasis on the positives that bring balance to this point of view. A total of 16 studies (17.39%) in this review investigated the full range of caregiving experiences, including potential positive aspects and benefits of caregiving. Essentially, caregiving can be a rewarding experience that facilitates personal growth, maturity and resilience ( Netto et al. , 2009 ; Sánchez-Izquierdo et al. , 2015 ; Quinn et al. , 2015 ) with population-based surveys indicating that caregiving may relate to significantly reduced all-cause mortality rates in comparison to a matched sample of non-caregivers ( Brown et al. , 2009 ; O’Reilly et al. , 2008 ). Caregivers often report feeling gratitude and a sense of mastery, meaningfulness and coherence in their existence ( Cohen et al. , 2002 ; Quinn et al. , 2012 ; Cheng et al. , 2017 ). Therefore, the findings that suggest positive aspects of caregiving to be inversely related to burden and depression are unsurprising [i.e. ( Hilgeman et al. , 2007 )].

Theoretical models offer different explanations to understand these positive changes in the caregiver’s life. For example, the adaption stress and coping model ( Folkman, 1997 ), suggests that positive psychological states are associated with finding positive meaning in adversity, and helping the individual to make sense of the situation. This can result in the caregiver identifying positive changes in their life ( Park, 2010 ). Fredrickson et al. (Fredrickson et al. , 2003 ) take a similar approach in their broaden-and-build theory by suggesting that positive emotions contribute to cognitive broadening, which then widens the individual’s attention, thinking and behaviour. This broadening effect helps foster a range of adaptive and durable personal resources that contribute to the development of resilience ( Fredrickson, 2004 ). Similarly, theories that are based on benefit-finding imply that adaptive coping emerges over time as a way of responding to stressful circumstances. This enables personal growth and fosters resilience.

In addition to situational and personal factors, literature indicates that adaptive coping also depends upon demographic characteristics. For example, caregiver personality characteristics such as extraversion and agreeableness along with social support (especially support from loved ones) are associated with positive aspects of caregiving ( Koerner et al. , 2009 ). Ethnicity can also impact on the experience of positive aspects in caregiving. Studies show that African Americans report more positive caregiving outcomes associated with active coping styles and greater resilience in comparison to Caucasians ( Dilworth-Anderson et al. , 2005 ; McCallum et al. , 2006 ; Merritt et al. , 2011 ). This is consistent with studies in which African American family caregivers were less affected by depression, caregiver burden and strain than white family caregivers ( Haley et al. , 2004 ). A study by Roth et al. (2015) also found that African American family carers felt more capable at appreciating and developing a positive attitude towards life when compared to Caucasians. This positive attitude towards care is explained as a reflection of long-standing traditions of the African American community. This attitude is cultivated in early life through racial socialization and maintained in adulthood life through spiritual and cultural beliefs, especially when facing adversities or overcoming hardships ( McLoyd et al. , 2005 ). Roff et al. (2004) outlined similar findings but added that religiosity partially mediates the relationship between ethnicity and the elevated positive attitudes in caregiving among African Americans. Although symptoms of depression were not associated with baseline levels of positive aspects in caregiving, Roff et al. (Roff et al. , 2004 ) found that lower anxiety levels, less worrying and lower socioeconomic status among African American caregivers contributed to higher levels of positive aspects in caregiving. In conclusion, positive aspects of caregiving may be related to coping and having a more optimistic outlook on life.

Moderating factors that can contribute to the family carers’ wellbeing

A total of 44 studies (47.82%) suggest that tailored means of support are pivotal in improving family carers’ physical and mental wellbeing. Here, a particular focus is placed on examining the individual needs of the family caregiver and how these may be addressed ( Temple and Dow, 2018 ). Findings from the review suggest that the most prevalent types of unmet needs include financial, physical and social support [i.e. ( Highet et al. , 2005 ; Temple and Dow, 2018 ; Brickell et al. , 2019 ; Casarez et al. , 2019 ; Jones et al. , 2019 ; Alasmee and Hasan, 2020 ; Anchan and Janardhana, 2020 ; Brites et al. , 2020 ; Lai et al. , 2020 ; Teles et al. , 2021 )]. Temple and Dow’s (2018) findings indicate that having any unmet needs for support increased the likelihood of the carer experiencing psychological distress two-fold. With each successive unmet need for support, the odds of psychological distress increased another 1.37 times. Therefore, besides the previously discussed negative effect of financial burden (7 studies; 7.61%), maintaining social connections (17 studies; 18.48%) and receiving professional or social support (16 studies; 17.39%), unmet needs are key factors in understanding and addressing the carer’s physical and psychological wellbeing.

Increasing social resources was found to reduce the risk of suffering from poor mental health in family caregivers for patients with different mental illnesses ( Gaugler et al. , 2004 ; Griffin et al. , 2017 ; Otero et al. , 2019 ). This may be explained by feelings of social connectedness counteracting the effects of loneliness and social isolation that are associated with depression and depressive symptoms in family carers ( Beeson, 2003 ; Vasileiou et al. , 2017 ; McAuliffe et al. , 2018 ). In this sense, empathy and social connections with family and friends as well as healthcare staff can provide a source of strength and a sense of mastery in one’s predicament ( Shanley et al. , 2011 ). Peer support groups may be particularly relevant in reducing the burden of care by providing the family carer with a feeling of social connectedness with individuals who share similar experiences ( Shanley et al. , 2011 ). In addition, peer support groups give family carers the space and opportunity to reflect on their own caring routine, helping them cope more effectively with the competing demands of care ( Stanley et al. , 2017 ).

In addition to peer support groups, research suggests that smartphone technologies (i.e. applications) can help improve and maintain family carers’ physical and mental health. For example, Casarez et al. (Casarez et al. , 2019 ) report that using mental health (mHealth) apps leads to a reduction of carer burden and distress and an increase in social contacts. They not only improve the relationship between carer and care-receiver but help them to manage the administration of medication and contribute to mental health literacy. Specifically, mHealth apps can provide information for family carers on how to manage symptoms of mental health disorders, what to do in difficult situations, provide constructive practices and alert users to the need for professional interventions. This is important because information about mental health symptoms can foster an understanding of the care receivers’ experiences and reduce burden and distress in caregivers [i.e. ( Vasileiou et al. , 2017 ; Brickell et al. , 2019 ; Casarez et al. , 2019 ; Jones et al. , 2019 ; Alasmee and Hasan, 2020 ; Anchan and Janardhana, 2020 ; Hahn et al. , 2020 ; Lai et al. , 2020 ; McGaw et al. , 2020 ; Wayland et al. , 2021 )]. However, while mental health literacy is crucial in improving caregiver wellbeing, studies have found that in certain situations, carers are not interested in information about the mental health illness of the care receiver ( Williams et al. , 2014 ). Rather, Williams et al. (Williams et al. , 2014 ) suggests that caregivers adopt active information-seeking techniques to not only deal with current problems and to increase their sense of control, but avoid considering future logistics of caregiving when they feel helpless or overwhelmed with stress. Thus, caregiving stressors affect the extent to which caregivers may adequately utilize the information and service provisions available. In conclusion, for them to be effective, resources must be tailored to the caregivers’ individual needs.

Importantly, cultural differences need to be taken into consideration when tailoring support [i.e. ( Sun et al. , 2008 ; Chow and Ho, 2015 ; Meyer et al. , 2015 ; Tuomola et al. , 2016 ; Mahomed and Pretorius, 2020 ; Kabitsi and Powers, 2002 )]. This review suggests that cultural differences impact on patterns of help-seeking behaviour, access to sources of formal and informal support, the search for information about the mental illness and the motivation to provide family care ( Kabitsi and Powers, 2002 ; Mahomed and Pretorius, 2020 ). For example, Mahomed and Pretorius (Mahomed and Pretorius, 2020 ) found that male South Africans in low-income communities utilize a collective approach towards caregiving, relying on wider informal social networks instead of institutional and formal care services. Similar results were evident in studies that compared motives for family caregiving in Greece and America ( Kabitsi and Powers, 2002 ). This study found that Greek and American carers were motivated by different factors. Greek families understood themselves in a more relational and largely family-interwoven frame, while American family carers were more motivated by financial reasons to provide family care. It can therefore be concluded that cultural differences in caregiving motivations may result in adaptive or maladaptive outcomes for the caregiver and care receiver. Here, studies suggest that cultural and religious values often correlate and overlap with one another. Several studies outlined the importance of religion and spirituality in helping family caregivers to manage the stress of caregiving [i.e. ( Meyer et al. , 2015 ; Robinson-Lane et al. , 2021 )]. For example, Tuomola et al. (Tuomola et al. , 2016 ), Chan (Chan, 2010 ) and Hinton et al. (Hinton et al. , 2008 ) outlined how Confucian principles that highlight the importance of closeness between family members are reflected in family carers’ reasoning processes. By drawing on the collectivistic cultures of East Asia that espouse a set of values and beliefs which promote maintenance of harmony with individuals and with the environment, family carers could overcome obstacles and emotional difficulties. Similar results are supported in Meyer et al. ’s (Meyer et al. , 2015 ) examination of Christian family carers who relied on their faith to cope with challenging situations. Community support and doctrinal beliefs about God’s will helped caregivers to cope with distress and burden. In conclusion, the studies presented in this review suggest that it may be valuable to include an understanding of cultural values and an individual’s spirituality and religion as components of tailored means of support for family caregivers.

This scoping review was conducted to understand the effects of caring for family members with mental health illnesses on caregivers’ wellbeing. The findings suggest that mental and physical wellbeing of family caregivers may depend upon a combination of situational and sociodemographic characteristics.

The review identified elderly, female and spousal primary-caregivers as a group who are at risk of experiencing mental and physical health. Primary caregivers, in comparison to secondary caregivers, suffer higher levels of distress, have less leisure time and smaller social circles. In addition, the findings indicate that there are gender differences that also need to be taken into consideration. The scoping review found that female spousal carers may view caring for their partner as their duty, try to be less dependent on support from others and take on multiple roles to fill the gaps that the mental illness of their partner has caused in comparison to their male counterparts, In doing so, female spousal carers may experience higher levels of distress and caregiver burden than male family caregivers. Spousal family caregivers often give up their work. This is linked to financial uncertainty and elevated levels of distress and depressive symptoms. In this sense, it is possible that some factors associated with caring for family members such as limited temporal resources may contribute to and trigger further stressors such as financial uncertainty. Similarly, elderly family caregivers tend to experience lower levels of wellbeing as they often do not have the stamina required for caring responsibilities, and experience diminishing social circles besides suffering from their own health issues. Therefore, the results suggest that for older caregivers, there are a range of underlying stressors that decrease the individual’s overall quality of life and life satisfaction while increasing the burden of care.

Nevertheless, caregiving can also be a rewarding experience that fosters meaning, resilience and personal growth in the caregiver. Therefore, the present results suggest that the negative effects of caregiving can be balanced by the individuals’ personality, social support, religiosity and culture. Specifically, high levels of agreeableness and extraversion in combination with social support relate to lower levels of caregiver stress and burden. Social resources were found to play a particularly important role because support from peers counteracts the loneliness and isolation that can lead to depression. In this sense, social resources combined with personality traits and social skills may be important in maintaining life satisfaction and quality of life. Also, positive attitudes towards life coupled with religious or spiritual beliefs helped improve the family caregivers’ wellbeing because spirituality and religiosity provide a framework through which caregiving experiences can be interpreted in meaningful ways. This supports the idea that the meaningful interpretation of one’s circumstances is an important skill that can help give family caregivers a positive outlook on their life and understand difficult circumstances through multiple perspectives.

However, despite the findings from this review, several limitations need to be taken into consideration. The present review did not examine demands, capabilities and meaning at the community level, nor did it consider the care receiver’s adaptation and adjustment to their mental illness. The scoping review did not seek to assess the studies included regarding their quality or effect sizes. We also acknowledge that the sample of articles is skewed towards the challenges and demands of family caregivers for dementia (38 articles, 41.3%) and Alzheimer patients (13 articles, 14.13%). While the scholarship reviewed suggests that there is little difference in caregiver experience between conditions, it may still be possible that other unique aspects of the caregiver experiences in relation to other mental health illnesses have not been covered. In this sense, the present review included caregivers of individuals with different pathologies but did not necessarily differentiate between their experiences. Future research may therefore wish to focus on the experiences of family caregivers looking after an individual with specific mental health conditions such as depression or schizophrenia. In addition, as the care receiver’s health can also influence the caregiver’s quality of life, only few studies in the review discussed the caregivers’ overall quality of life. This is problematic as it remains unclear whether the caregiver has lower self-rated quality of life besides scoring high on e.g. caregiver burden, and caregiver distress. This limitation can be addressed in future reviews focussing on examining and comparing specific measures such as self-rated quality of life. In addition, the scope of future reviews could include research that examines interventions intending to improve family caregivers’ wellbeing.

Despite these limitations, the present review achieved its research objective by providing an overview of how family caregiving affects the caregivers physical, mental and social wellbeing, and the best ways to support family carers. While caregiving can have a negative impact on the physical and mental wellbeing of the carer, specific sociodemographic, personal and situational factors can work as a buffer. Therefore, support for family caregivers must be tailored to individual needs, taking into consideration personality, particular circumstances, along with cultural and personal beliefs.

Abraham A. , Sommerhalder K. , Abel T. ( 2010 ) Landscape and well-being: a scoping study on the health-promoting impact of outdoor environments . International Journal of Public Health , 55 , 59 – 69 .

Google Scholar

Abu Bakar S. H. , Weatherley R. , Omar N. , Abdullah F. , Mohamad Aun N. S. ( 2014 ) Projecting social support needs of informal caregivers in Malaysia . Health & Social Care in the Community , 22 , 144 – 154 .

Agenagnew L. , Kassaw C. ( 2020 ) The lifetime prevalence and factors associated with relapse among mentally ill patients at Jimma University Medical Center, Ethiopia: cross sectional study . Journal of Psychosocial Rehabilitation and Mental Health , 7 , 211 – 220 .

Akbari M. , Alavi M. , Irajpour A. , Maghsoudi J. ( 2018 ) Challenges of family caregivers of patients with mental disorders in Iran: a narrative review . Iranian Journal of Nursing and Midwifery Research , 23 , 329 – 337 .

Alasmee N. , Hasan A. A. ( 2020 ) Primary caregivers experience of anti-psychotic medication: a qualitative study . Archives of Psychiatric Nursing , 34 , 520 – 528 .

Ali S. , Rhodes L. , Moreea O. , McMillan D. , Gilbody S. , Leach C. et al.  ( 2017 ) How durable is the effect of low intensity CBT for depression and anxiety? Remission and relapse in a longitudinal cohort study . Behaviour Research and Therapy , 94 , 1 – 8 .

Amagai M. , Takahashi M. , Amagai F. , ( 2016 ) Qualitative study of resilience of family caregivers for patients with schizophrenia in Japan . Age (Years) , 63 , 55 – 74 .

Anchan V. , Janardhana N. ( 2020 ) Transformation of attitude through brief psychoeducation program for the husbands of women with postpartum psychiatric disorders . Asian Journal of Psychiatry , 51 , 101841 .

Arksey H. , O’Malley L. ( 2005 ) Scoping studies: towards a methodological framework . International Journal of Social Research Methodology , 8 , 19 – 32 .

Avdikou K. , Stefanatos C. , Tsatali M. , Gouva M. , Tsolaki M. ( 2019 ) The role of gender in shame, hostility, and aggression experienced by caregivers for patients with dementia . American Journal of Alzheimer’s Disease & Other Dementias , 34 , 231 – 235 .

Beeson R. A. ( 2003 ) Loneliness and depression in spousal caregivers of those with Alzheimer’s disease versus non-caregiving spouses . Archives of Psychiatric Nursing , 17 , 135 – 143 .

Brickell T. A. , Lippa S. M. , French L. M. , Gartner R. L. , Driscoll A. E. , Wright M. M. et al.  ( 2019 ) Service needs and health outcomes among caregivers of service members and veterans following TBI . Rehabilitation Psychology , 64 , 72 – 86 .

Brites R. , Brandão T. , Moniz Pereira F. , Hipólito J. , Nunes O. ( 2020 ) Effects of supporting patients with dementia: a study with dyads . Perspectives in Psychiatric Care , 56 , 614 – 620 .

Brown J. , Chen S. L. ( 2008 ) Help-seeking patterns of older spousal caregivers of older adults with dementia . Issues in Mental Health Nursing , 29 , 839 – 852 .

Brown S. L. , Smith D. M. , Schulz R. , Kabeto M. U. , Ubel P. A. , Poulin M. et al.  ( 2009 ) Caregiving behavior is associated with decreased mortality risk . Psychological Science , 20 , 488 – 494 .

Bruffaerts R. , Demyttenaere K. , Kessler R. C. , Tachimori H. , Bunting B. , Hu C. et al.  ( 2015 ) The associations between preexisting mental disorders and subsequent onset of chronic headaches: a worldwide epidemiologic perspective . The Journal of Pain , 16 , 42 – 52 .

Calasanti T. , Bowen M. E. ( 2006 ) Spousal caregiving and crossing gender boundaries: maintaining gendered identities . Journal of Aging Studies , 20 , 253 – 263 .

Casarez R. L. , Barlow E. , Iyengar S. M. , Soares J. C. , Meyer T. D. ( 2019 ) Understanding the role of m-Health to improve well-being in spouses of patients with bipolar disorder . Journal of Affective Disorders , 250 , 391 – 396 .

Chan S. W. C. ( 2010 ) Family caregiving in dementia: the Asian perspective of a global problem . Dementia and Geriatric Cognitive Disorders , 30 , 469 – 478 .

Chang Y. C. , Chou F. H. C. ( 2015 ) Effects of home visit intervention on re-hospitalization rates in psychiatric patients . Community Mental Health Journal , 51 , 598 – 605 .

Cheng S. T. , Mak E. P. , Fung H. H. , Kwok T. , Lee D. T. , Lam L. C. ( 2017 ) Benefit-finding and effect on caregiver depression: a double-blind randomized controlled trial . Journal of Consulting and Clinical Psychology , 85 , 521 – 529 .

Chiang C. Y. , Lu C. Y. , Lin Y. H. , Lin H. Y. , Sun F. K. ( 2015 ) Caring stress, suicidal attitude and suicide care ability among family caregivers of suicidal individuals: a path analysis . Journal of Psychiatric and Mental Health Nursing , 22 , 792 – 800 .

Choi H. ( 2018 ) Giving or receiving spouse care and marital satisfaction among older Korean individuals . Social Science & Medicine .

Chow E. O. W. , Ho H. C. ( 2015 ) Caregiver strain, age, and psychological well-being of older spousal caregivers in Hong Kong . Journal of Social Work , 15 , 479 – 497 .

Cohen C. A. , Colantonio A. , Vernich L. ( 2002 ) Positive aspects of caregiving: rounding out the caregiver experience . International Journal of Geriatric Psychiatry , 17 , 184 – 188 .

Colvez A. , Joel M. E. , Ponton-Sanchez A. , Royer A. C. ( 2002 ) Health status and work burden of Alzheimer patients’ informal caregivers: comparisons of five different care programs in the European Union . Health Policy (Amsterdam, Netherlands) , 60 , 219 – 233 .

Crellin N. E. , Orrell M. , McDermott O. , Charlesworth G. ( 2014 ) Self-efficacy and health-related quality of life in family carers of people with dementia: a systematic review . Aging & Mental Health , 18 , 954 – 969 .

Dadalto E. V. , Cavalcante F. G. ( 2021 ) The place of family caregivers for older adults with Alzheimer’s disease: a literature review in Brazil and the United States . Ciência & Saúde Coletiva , 26 , 147 – 157 .

Dahlberg L. , Demack S. , Bambra C. ( 2007 ) Age and gender of informal carers: a population‐based study in the UK . Health & Social Care in the Community , 15 , 439 – 445 .

Dilworth-Anderson P. , Brummett B. H. , Goodwin P. , Williams S. W. , Williams R. B. , Siegler I. C. ( 2005 ) Effect of race on cultural justifications for caregiving . The Journals of Gerontology: Series B , 60 , S257 – S262 .

Donnellan W. J. , Bennett K. M. , Soulsby L. K. ( 2015 ) What are the factors that facilitate or hinder resilience in older spousal dementia carers? A qualitative study . Aging & Mental Health , 19 , 932 – 939 .

Fernando S. ( 2014 ) Mental Health Worldwide: Culture, Globalization and Development . Springer , London.

Google Preview

Folkman S. ( 1997 ) Positive psychological states and coping with severe stress . Social Science & Medicine (1982) , 45 , 1207 – 1221 .

Fredrickson B. L. ( 2004 ) The broaden-and-build theory of positive emotions . Philosophical Transactions of the Royal Society of London. Series B, Biological Sciences , 359 , 1367 – 1378 .

Fredrickson B. L. , Tugade M. M. , Waugh C. E. , Larkin G. R. ( 2003 ) What good are positive emotions in crises? A prospective study of resilience and emotions following the terrorist attacks on the United States on September 11th, 2001 . Journal of Personality and Social Psychology , 84 , 365 – 376 .

Gaugler J. E. , Anderson K. A. , Leach C. R. , Smith C. D. , Schmitt F. A. , Mendiondo M. ( 2004 ) The emotional ramifications of unmet need in dementia caregiving . American Journal of Alzheimer's Disease & Other Dementias , 19 , 369 – 380 .

Gibbons C. , Creese J. , Tran M. , Brazil K. , Chambers L. , Weaver B. et al.  ( 2014 ) The psychological and health consequences of caring for a spouse with dementia: a critical comparison of husbands and wives . Journal of Women & Aging , 26 , 3 – 21 .

Gonçalves-Pereira M. , Zarit S. H. , Cardoso A. M. , Alves da Silva J. , Papoila A. L. , Mateos R. ( 2020 ) A comparison of primary and secondary caregivers of persons with dementia . Psychology and Aging , 35 , 20 – 27 .

Greenwood N. , Pound C. , Brearley S. , Smith R. ( 2019 ) A qualitative study of older informal carers’ experiences and perceptions of their caring role . Maturitas , 124 , 1 – 7 .

Gresswell I. , Lally L. , Adamis D. , McCarthy G. M. ( 2018 ) Widening the net: exploring social determinants of burden of informal carers . Irish Journal of Psychological Medicine , 35 , 43 – 51 .

Griffin J. M. , Lee M. K. , Bangerter L. R. , Van Houtven C. H. , Friedemann-Sánchez G. , Phelan S. M. et al.  ( 2017 ) Burden and mental health among caregivers of veterans with traumatic brain injury/polytrauma . The American Journal of Orthopsychiatry , 87 , 139 – 148 .

Grover S. , Nehra R. , Malhotra R. , Kate N. ( 2017 ) Positive aspects of caregiving experience among caregivers of patients with dementia . East Asian Archives of Psychiatry , 27 , 7178 .

Hahn E. A. , Boileau N. R. , Hanks R. A. , Sander A. M. , Miner J. A. , Carlozzi N. E. ( 2020 ) Health literacy, health outcomes, and the caregiver role in traumatic brain injury . Rehabilitation Psychology , 65 , 401 – 408 .

Halas G. , Schultz A. S. , Rothney J. , Goertzen L. , Wener P. , Katz A. ( 2015 ) A scoping review protocol to map the research foci trends in tobacco control over the last decade . BMJ Open , 5 , e006643 .

Haley W. E. , Gitlin L. N. , Wisniewski S. R. , Mahoney D. F. , Coon D. W. , Winter L. et al.  ( 2004 ) Well-being, appraisal, and coping in African-American and Caucasian dementia caregivers: findings from the REACH study . Aging & Mental Health , 8 , 316 – 329 .

Hanna F. , Barbui C. , Dua T. , Lora A. , van Regteren Altena M. , Saxena S. ( 2018 ) Global mental health: how are we doing? World Psychiatry , 17 , 367 – 368 .

Highet N. , Thompson M. , McNair B. ( 2005 ) Identifying depression in a family member: the carers’ experience . Journal of Affective Disorders , 87 , 25 – 33 .

Hilgeman M. M. , Allen R. S. , DeCoster J. , Burgio L. D. ( 2007 ) Positive aspects of caregiving as a moderator of treatment outcome over 12 months . Psychology and Aging , 22 , 361 – 371 .

Hinton L. , Tran J. N. , Tran C. , Hinton D. ( 2008 ) Religious and spiritual dimensions of the Vietnamese dementia caregiving experience . Hallym International Journal of Aging: HIJA , 10 , 139 – 160 .

Hsiao C.-Y. , Lu H.-L. , Tsai Y.-F. ( 2020 ) Caregiver burden and health-related quality of life among primary family caregivers of individuals with schizophrenia: cross-sectional study . Quality of Life Research , 29 , 2745 – 2757 .

Jones S. M. , Woodward M. , Mioshi E. ( 2019 ) Social support and high resilient coping in carers of people with dementia . Geriatric Nursing , 40 , 584 – 589 .

Kabitsi N. , Powers D. V. ( 2002 ) Spousal motivations of care for demented older adults: a cross-cultural comparison of Greek and American female caregivers . Journal of Aging Studies , 16 , 383 – 399 .

Kate N. , Grover S. , Kulhara P. , Nehra R. ( 2013 ) Caregiving appraisal in schizophrenia: a study from India . Social Science & Medicine (1982) , 98 , 135 – 140 .

Koerner S. S. , Kenyon D. B. , Shirai Y. ( 2009 ) Caregiving for elder relatives: which caregivers experience personal benefits/gains? Archives of Gerontology and Geriatrics , 48 , 238 – 245 .

Lai D. W. ( 2012 ) Effect of financial costs on caregiving burden of family caregivers of older adults . Sage Open , 2 , 215824401247046 .

Lai F. H. Y. , Yan E. W. H. , Tsui W. S. , Yu K. K. Y. ( 2020 ) A randomized control trial of activity scheduling for caring for older adults with dementia and its impact on their spouse care-givers . Archives of Gerontology and Geriatrics , 90 , 104167 .

Lamont E. , Dickens G. L. ( 2021 ) Mental health services, care provision, and professional support for people diagnosed with borderline personality disorder: systematic review of service-user, family, and carer perspectives . Journal of Mental Health (Abingdon, England) , 30 , 619 – 633 .

Levac D. , Colquhoun H. , O’Brien K. K. ( 2010 ) Scoping studies: advancing the methodology . Implementation Science , 5 , 1 – 9 .

Mahomed A. , Pretorius C. ( 2020 ) Availability and utilization of support services for South African male caregivers of people with Alzheimer’s disease in low-income communities . Dementia , 20 , 633 – 652 .

Malins S. , Biswas S. , Patel S. , Levene J. , Moghaddam N. , Morriss R. ( 2020 ) Preventing relapse with personalized smart‐messaging after cognitive behavioural therapy: a proof‐of‐concept evaluation . British Journal of Clinical Psychology , 59 , 241 – 259 .

Mausbach B. T. , Chattillion E. A. , Ho J. , Flynn L. M. , Tiznado D. , von Känel R. et al.  ( 2014 ) Why does placement of persons with Alzheimer’s disease into long-term care improve caregivers’ well-being? Examination of psychological mediators . Psychology and Aging , 29 , 776 – 786 .

McAuliffe L. , Ong B. , Kinsella G. ( 2018 ) Mediators of burden and depression in dementia family caregivers: kinship differences . Dementia .

McCallum T. J. , Sorocco K. H. , Fritsch T. ( 2006 ) Mental health and diurnal salivary cortisol patterns among African American and European American female dementia family caregivers . The American Journal of Geriatric Psychiatry , 14 , 684 – 693 .

McGaw V. E. , Reupert A. E. , Maybery D. ( 2020 ) Partners of veterans with PTSD: parenting and family experiences . Families in Society: The Journal of Contemporary Social Services , 101 , 456 – 468 .

McKee R. G. ( 2020 ) Exploring Experiences of Family Caregivers: The Relationship between Caregivers Perceived Burden and the Disability of the Care Receiver . Southern Connecticut State University , New Haven, US.

McLoyd V. C. , Hill N. E. , Dodge K. A. (eds) ( 2005 ) African American Family Life: Ecological and Cultural Diversity . Guilford , New York, NY .

Melemis S. M. ( 2015 ) Focus: addiction: relapse prevention and the five rules of recovery . The Yale Journal of Biology and Medicine , 88 , 325 – 332 .

Merritt M. M. , McCallum T. J. , Fritsch T. ( 2011 ) How much striving is too much? John Henryism active coping predicts worse daily cortisol responses for African American but not white female dementia family caregivers . The American Journal of Geriatric Psychiatry , 19 , 451 – 460 .

Meyer O. L. , Nguyen K. H. , Dao T. N. , Vu P. , Arean P. , Hinton L. ( 2015 ) The sociocultural context of caregiving experiences for Vietnamese dementia family caregivers . Asian American Journal of Psychology , 6 , 263 – 272 .

Moges S. , Belete T. , Mekonen T. , Menberu M. ( 2021 ) Lifetime relapse and its associated factors among people with schizophrenia spectrum disorders who are on follow up at Comprehensive Specialized Hospitals in Amhara region, Ethiopia: a cross-sectional study . International Journal of Mental Health Systems , 15 , 1 – 12 .

Moher D. , Liberati A. A. , Tetzlaff J. , Altman D. G.; PRISMA Group ( 2009 ) Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement . BMJ (Clinical Research ed.) , 339 , b2535 .

Netto N. , Jenny G. Y. N. , Philip Y. L. K. . ( 2009 ) Growing and gaining through caring for a loved one with dementia . Dementia , 8 , 245 – 261 .

Nordtug B. , Holen A. ( 2011 ) Similarities and differences in caring burden of home dwellers with partners suffering from chronic obstructive pulmonary disease or dementia . Home Health Care Management & Practice , 23 , 93 – 101 .

Norris D. , Eichler M. , Cramm H. , Tam‐Seto L. , Smith‐Evans K. ( 2018 ) Operational stress injuries and the mental health and well‐being of veteran spouses: a scoping review . Journal of Family Theory & Review , 10 , 657 – 671 .

O’Brien K. K. , Colquhoun H. , Levac D. , Baxter L. , Tricco A. C. , Straus S. et al.  ( 2016 ) Advancing scoping study methodology: a web-based survey and consultation of perceptions on terminology, definition and methodological steps . BMC Health Services Research , 16 , 1 – 12 .

O’Flaherty J. , Phillips C. ( 2015 ) The use of flipped classrooms in higher education: a scoping review . The Internet and Higher Education , 25 , 85 – 95 .

O’Reilly D. , Connolly S. , Rosato M. , Patterson C. ( 2008 ) Is caring associated with an increased risk of mortality? A longitudinal study . Social Science & Medicine , 67 , 1282 – 1290 .

Ong H. L. , Vaingankar J. A. , Abdin E. , Sambasivam R. , Fauziana R. , Tan M. E. et al.  ( 2018 ) Resilience and burden in caregivers of older adults: moderating and mediating effects of perceived social support . BMC Psychiatry , 18 , 27 .

Østergaard T. , Lundgren T. , Zettle R. D. , Landrø N. I. , Haaland V. Ø. ( 2020 ) Psychological flexibility in depression relapse prevention: processes of change and positive mental health in group-based ACT for residual symptoms . Frontiers in Psychology , 11 , 528 .

Otero P. , Torres Á. J. , Vázquez F. L. , Blanco V. , Ferraces M. J. , Díaz O. ( 2019 ) Does the disease of the person receiving care affect the emotional state of non-professional caregivers? Frontiers in Psychology , 10 , 1144 .

Özgönül M. L. , Bademli K. ( 2022 ) Ethical problems experienced by family caregivers of patient with schizophrenia: a hermeneutic phenomenological study . Perspectives in Psychiatric Care .

Papastavrou E. , Tsangari H. , Kalokerinou A. , Papacostas S. S. , Sourtzi P. ( 2009 ) Gender issues in caring for demented relatives . Health Science Journal , 3 , 41 – 53 .

Park C. L. ( 2010 ) Making sense of the meaning literature: an integrative review of meaning making and its effects on adjustment to stressful life events . Psychological Bulletin , 136 , 257 – 301 .

Pattanayak R. D. , Jena R. , Tripathi M. , Khandelwal S. K. ( 2010 ) Assessment of burden in caregivers of Alzheimer’s disease from India . Asian Journal of Psychiatry , 3 , 112 – 116 .

Pione R. D. , Spector A. , Cartwright A. V. , Stoner C. R. ( 2021 ) A psychometric appraisal of positive psychology outcome measures in use with carers of people living with dementia: a systematic review . International Psychogeriatrics , 33 , 385 – 320 .

Polanczyk G. V. , Salum G. A. , Sugaya L. S. , Caye A. , Rohde L. A. ( 2015 ) Annual research review: a meta‐analysis of the worldwide prevalence of mental disorders in children and adolescents . Journal of Child Psychology and Psychiatry, and Allied Disciplines 56 , 345 – 365 .

Post D. , Agteren J. , Kasai D. , Barrett A. , Doyle M. , Kernot J. et al.  ( 2021 ) Caring for carers: understanding the physical and psychological well‐being of carers of veterans in Australia . Health & Social Care in the Community , 30 , e793 – e803 .

Pöysti M. M. , Laakkonen M. L. , Strandberg T. , Savikko N. , Tilvis R. S. , Eloniemi-Sulkava U. et al.  ( 2012 ) Gender differences in dementia spousal caregiving . International Journal of Alzheimer’s Disease , 2012 , 162960 .

Quinn C. , Clare L. , Woods R. T. ( 2012 ) What predicts whether caregivers of people with dementia find meaning in their role? International Journal of Geriatric Psychiatry , 27 , 1195 – 1202 .

Quinn C. , Clare L. , Woods R. T. ( 2015 ) Balancing needs: the role of motivations, meanings and relationship dynamics in the experience of informal caregivers of people with dementia . Dementia (London, England) , 14 , 220 – 237 .

Robinson-Lane S. G. , Zhang X. , Patel A. ( 2021 ) Coping and adaptation to dementia family caregiving: a pilot study . Geriatric Nursing , 42 , 256 – 261 .

Roff L. L. , Burgio L. D. , Gitlin L. , Nichols L. , Chaplin W. , Hardin J. M. ( 2004 ) Positive aspects of Alzheimer’s caregiving: the role of race . The Journals of Gerontology Series B: Psychological Sciences and Social Sciences , 59 , P185 – P190 .

Roth D. L. , Dilworth-Anderson P. , Huang J. , Gross A. L. , Gitlin L. N. ( 2015 ) Positive aspects of family caregiving for dementia: differential item functioning by race . The Journals of Gerontology Series B: Psychological Sciences and Social Sciences , 70 , 813 – 819 .

Roth D. L. , Perkins M. , Wadley V. G. , Temple E. M. , Haley W. E. ( 2009 ) Family caregiving and emotional strain: associations with quality of life in a large national sample of middle-aged and older adults . Quality of Life Research , 18 , 679 – 688 .

Ruisoto P. , Contador I. , Fernández-Calvo B. , Serra L. , Jenaro C. , Flores N. et al.  ( 2020 ) Mediating effect of social support on the relationship between resilience and burden in caregivers of people with dementia . Archives of Gerontology and Geriatrics , 86 , 103952 .

Sadock B. , Sadock V. A. , Sussman N. ( 2017 ) Kaplan & Sadock’s Pocket Handbook of Psychiatric Drug Treatment . Lippincott Williams & Wilkins , Philadelphia, US.

Sánchez-Izquierdo M. , Prieto-Ursúa M. , Caperos J. M. ( 2015 ) Positive aspects of family caregiving of dependent elderly . Educational Gerontology , 41 , 745 – 756 .

Shanley C. , Russell C. , Middleton H. , Simpson-Young V. ( 2011 ) Living through end-stage dementia: the experiences and expressed needs of family carers . Dementia , 10 , 325 – 340 .

Sharma N. , Chakrabarti S. , Grover S. ( 2016 ) Gender differences in caregiving among family-caregivers of people with mental illnesses . World Journal of Psychiatry , 6 , 7 .

Shiraishi N. , Reilly J. ( 2019 ) Positive and negative impacts of schizophrenia on family caregivers: a systematic review and qualitative meta-summary . Social Psychiatry and Psychiatric Epidemiology , 54 , 277 – 290 .

Stanley S. , Balakrishnan S. , Ilangovan S. ( 2017 ) Psychological distress, perceived burden and quality of life in caregivers of persons with schizophrenia . Journal of Mental Health (Abingdon, England) , 26 , 134 – 141 .

Sun F. , Lee Roff L. , Klemmack D. , Burgio L. D. ( 2008 ) The influences of gender and religiousness on Alzheimer disease caregivers’ use of informal support and formal services . Journal of Aging and Health , 20 , 937 – 953 .

Teles S. , Ferreira A. , Paúl C. ( 2021 ) Access and retention of informal dementia caregivers in psychosocial interventions: a cross-sectional study . Archives of Gerontology and Geriatrics , 93 , 104289 .

Temple J. B. , Dow B. ( 2018 ) The unmet support needs of carers of older Australians: prevalence and mental health . International Psychogeriatrics , 30 , 1849 – 1860 .

Tsai C.-F. , Hwang W.-S. , Lee J.-J. , Wang W.-F. , Huang L.-C. , Huang L.-K. et al.  ( 2021 ) Predictors of caregiver burden in aged caregivers of demented older patients . BMC Geriatrics , 21 , 1 – 9 .

Tuomola J. , Soon J. , Fisher P. , Yap P. ( 2016 ) Lived experience of caregivers of persons with dementia and the impact on their sense of self: a qualitative study in Singapore . Journal of Cross-Cultural Gerontology , 31 , 157 – 172 .

van der Sanden R. L. , Bos A. E. , Stutterheim S. E. , Pryor J. B. , Kok G. ( 2013 ) Experiences of stigma by association among family members of people with mental illness . Rehabilitation Psychology , 58 , 73 – 80 .

Van Der Sanden R. L. , Bos A. E. , Stutterheim S. E. , Pryor J. B. , Kok G. ( 2015 ) Stigma by association among family members of people with a mental illness: a qualitative analysis . Journal of Community & Applied Social Psychology , 25 , 400 – 417 .

Vasileiou K. , Barnett J. , Barreto M. , Vines J. , Atkinson M. , Lawson S. et al.  ( 2017 ) Experiences of loneliness associated with being an informal caregiver: a qualitative investigation . Frontiers in Psychology , 8 , 585 .

Walsh K. , Grech C. , Hill K. ( 2019 ) Health advice and education given to overweight patients by primary care doctors and nurses: a scoping literature review . Preventive Medicine Reports , 14 , 100812 .

Wayland S. , Coker S. , Maple M. ( 2021 ) The human approach to supportive interventions: the lived experience of people who care for others who suicide attempt . International Journal of Mental Health Nursing , 30 , 667 – 682 .

WHO ( 2017 ) Mental Health Atlas. https://apps.who.int/iris/bitstream/handle/10665/272735/9789241514019-eng.pdf?ua=1  (last accessed 19 March 2022).

Williams K. L. , Morrison V. , Robinson C. A. ( 2014 ) Exploring caregiving experiences: caregiver coping and making sense of illness . Aging & Mental Health , 18 , 600 – 609 .

Yin Y. , Zhang W. , Hu Z. , Jia F. , Li Y. , Xu H. et al.  ( 2014 ) Experiences of stigma and discrimination among caregivers of persons with schizophrenia in China: a field survey . PLoS One , 9 , e108527 .

Zwar L. , König H. H. , Hajek A. ( 2020 ) Psychosocial consequences of transitioning into informal caregiving in male and female caregivers: findings from a population-based panel study . Social Science & Medicine , 264 , 113281 .

Email alerts

Citing articles via.

• Recommend to Your Librarian
• Journals Career Network

Affiliations

• Online ISSN 1460-2245
• Print ISSN 0957-4824
• Copyright © 2024 Oxford University Press
• About Oxford Academic
• Publish journals with us
• University press partners
• What we publish
• New features  
• Open access
• Institutional account management
• Rights and permissions
• Get help with access
• Accessibility
• Advertising
• Media enquiries
• Oxford University Press
• Oxford Languages
• University of Oxford

Oxford University Press is a department of the University of Oxford. It furthers the University's objective of excellence in research, scholarship, and education by publishing worldwide

• Copyright © 2024 Oxford University Press
• Cookie settings
• Cookie policy
• Privacy policy
• Legal notice

This Feature Is Available To Subscribers Only

Sign In or Create an Account

This PDF is available to Subscribers Only

For full access to this pdf, sign in to an existing account, or purchase an annual subscription.

Click through the PLOS taxonomy to find articles in your field.

For more information about PLOS Subject Areas, click here .

Loading metrics

Open Access

Peer-reviewed

Research Article

The lived experience of caring for someone with bipolar disorder: A qualitative study

Roles Conceptualization, Data curation, Formal analysis, Investigation, Methodology, Project administration, Writing – original draft, Writing – review & editing

* E-mail: [email protected]

Affiliations School of Medicine and Public Health, University of Newcastle, Callaghan, NSW, Australia, School of Psychological Sciences, University of Newcastle, Callaghan, NSW, Australia

Roles Conceptualization, Formal analysis, Methodology, Supervision, Writing – review & editing

Affiliation School of Psychological Sciences, University of Newcastle, Callaghan, NSW, Australia

Roles Conceptualization, Formal analysis, Funding acquisition, Supervision, Writing – review & editing

Affiliation School of Medicine and Public Health, University of Newcastle, Callaghan, NSW, Australia

• Bronte Speirs, 
• Tanya L. Hanstock, 
• Frances J. Kay-Lambkin

• Published: January 19, 2023
• https://doi.org/10.1371/journal.pone.0280059
• Reader Comments

Being a close family or friend of someone with bipolar disorder (BD) can lead to experiences of increased stress, anxiety and depressive symptoms related to the burden of caring. However, the lived experience of being a carer for a person with BD has not received significant research attention. This study aimed to gain further insight into the experiences of individuals in an informal caring role for someone with BD and determine what additional information and support these people need to take care of both themselves and the person they are caring for. Fifteen qualitative interviews were carried out with carers discussing their lived experiences with utilising coping strategies and supporting someone with BD. Following the interviews, thematic analysis was used to identify five key themes. These themes were: Separation of the person and the disorder, carer health and coping strategies, unpredictability and variability of symptoms, carer disillusionment and silencing, and story sharing and support needs. Overall, the findings highlighted the need for increased in-person and online support specifically tailored for carers with loved ones experiencing BD.

Citation: Speirs B, Hanstock TL, Kay-Lambkin FJ (2023) The lived experience of caring for someone with bipolar disorder: A qualitative study. PLoS ONE 18(1): e0280059. https://doi.org/10.1371/journal.pone.0280059

Editor: Anna Manelis, University of Pittsburgh, UNITED STATES

Received: April 11, 2022; Accepted: December 20, 2022; Published: January 19, 2023

Copyright: © 2023 Speirs et al. This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Data Availability: As the data for this study is qualitative (interview transcripts), it is sensitive, potentially identifying, and not able to be publicly shared. Requests to access these data can be sent to the University of Newcastle Human Research Ethics Committee institutional contact ( [email protected] ) quoting the study approval number H-2020-0436.

Funding: that FKL is funded by a fellowship from the National Health and Medical Research Council of Australia, under grant G1901367. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Competing interests: The authors have declared that no competing interests exist.

Introduction

In Australia, it is estimated that 1.3% of the population will experience bipolar disorder (BD) in their lifetime [ 1 ]. The cyclical nature of BD means that individuals can shift from mania or hypomania phases, characterised by higher energy and less need for sleep, into depressive phases of low interest and motivation [ 2 ]. It is a condition that not only presents significant challenges for the individual diagnosed but also has an indirect burden on their carer’s mental and physical health [ 3 ]. Perlick et al. [ 4 ] reported that 93% of BD carers had moderate or higher distress in at least one domain related to caregiving. In this context, a carer is defined as an individual who provides non-professional and informal personal care, support and assistance [ 5 ]. Carers are the primary support person for the individual and may include a spouse, parent, friend, sibling, foster carer or relative who is their main support person [ 6 ].

The cyclical and unpredictable aspects of BD can mean that the stressors facing carers can change quite frequently, [ 7 ] and this can impact the carers’ overall quality of life [ 8 ]. Existing research does not specifically address the caring experience in BD, but instead focuses more broadly on carers of people with mental health disorders [ 8 – 10 ]. Informal carers of people with schizophrenia [ 9 ] have reported that caregiving had an emotional, financial, physical and social impact on their lives, as well as difficulties with managing difficult symptoms such as violence. Qualitative interviews [ 4 , 10 ] with carers of people with serious mental illnesses, including those with BD and schizophrenia, identified carer isolation and stigma, and the need for carers to be more included in decision-making. Informal carers of people using methamphetamine also reported experiencing stigma, which affected them in reaching out for both professional support and support from close family and friends [ 11 ].

Whilst there is some international research [ 12 – 14 ] on the caring experience for BD, there is limited research in the Australian context. A British qualitative study that interviewed carers, service providers and people with BD found that to increase carer inclusion in decision-making and care for people with BD, there needs to be changes to healthcare operational frameworks and policy agendas [ 12 ]. Through interviews with carers and therapists, Kargar et al. [ 13 ] found that carer burden severity varies and is impacted by individual, social and organisational factors. Additionally, a qualitative study with informal carers conducted in Mexico [ 14 ] found that carer burden included: financial status, relationships, relapse anxiety, depressive symptoms and for immediate family members, a fear of developing BD themselves. Together, this indicates a greater need for research to consider more specific condition-focused carer supports and experiences.

Evidence is only beginning to emerge about the lived experience of carers during mania and hypomania phases of BD, which make this caring experience unique from others [ 3 ]. Financial stress, which in manic phases of BD can lead to impulsive spending, contributes to the financial pressures of informal carers and can add additional stress to the caring relationship [ 15 ]. Individuals with BD have lower employment rates, which can also impact the financial strain and contribute to the stress caused by impulsive spending [ 16 ]. In the case where a carer is a spouse, the relationship with the person can be put under pressure and become maritally dysfunctional from excessive spending and financial difficulties, irritability, lack of affection from their partner [ 17 , 18 ] and changes in sexual patterns through different phases of the disorder [ 19 ]. An increase in risky behaviours, including alcohol and other substance use, can also occur for individuals with BD during manic phases [ 15 , 20 ]. This contributes to the stress felt by carers and can leave them feeling worried about the safety of the person and embarrassed by the person’s actions around others [ 20 ]. Although not commonly recounted in the literature, Maskill et al. [ 21 ] described some aspects of being an informal carer for someone with BD including increased compassion. During depressive or mixed stages- where the person experiences both depressive and mania symptoms at the same time, people with BD are at an increased risk of suicidality [ 22 ] and hospitalisation [ 23 ], which can be distressing and worrying for carers, further complicating the informal care and support they can provide.

In the Australian context, 72% of informal primary carers are female [ 24 ]. As a result, the burden of informal caring is heightened for women. Carers have a vital role in the health outcomes of people with BD and in maintaining their safety [ 25 ], which can be restricted when carers are experiencing increased stress and burnout [ 26 , 27 ]. Carers of people with BD report increased psychiatric symptoms, including stress, anxiety and depression, with the most robust evidence being for depressive symptoms [ 27 ]. Perlick et al. [ 16 ] found that perceived stigma was positively associated with the presentation of depressive symptoms in carers of people with BD and that 63% of this association was related to reduced social support and coping effectiveness. Further, Perlick et al. [ 28 ] found that in informal carers of people with BD, caregiving burden is a strong predictor for the development of carer depressive symptoms.

Cuijpers and Stam [ 26 ] reported that a carer’s ability to cope with the person’s behaviour and worry less could reduce their emotional burnout and overall burden. In addition, providing psychological support to carers indirectly supports the health outcomes of the person they are caring for [ 7 ].

The primary focus of interventions and programs for carers of individuals diagnosed with BD has previously been on psychoeducation, both in-person [ 26 , 29 – 31 ] interventions through counselling and organisations such as ARAFMI [ 32 ], a mental health carer organisation and online programs [ 33 – 35 ]. Whilst psychoeducation has been shown to have some effect on improving the experience and reducing the burden for carers of people with severe mental illnesses post-treatment [ 36 ], there are still some concerns in the literature around how long these benefits last [ 37 ] and the most effective form of delivery [ 38 ]. An American study by Casarez et al. [ 39 ] identified through focus groups with spouses and partners of people with BD that mobile health devices may help improve wellbeing through providing information and skills related to communication with both their partner and children, stress reduction, medication management and social isolation. Although online cognitive behaviour therapy (CBT) interventions have been found to be effective for people with BD [ 40 ], these programs are yet to be developed for carers.

This study reports on the results of a qualitative study in which semi-structured phone interviews were conducted with family and friends of people with BD. Whilst a few previous studies have been on the experiences of informal carers of people with BD [ 4 , 12 – 14 , 39 , 41 ], overall, there is limited research in this area, especially in an Australian context. Additionally, the qualitative questions in this study were focused not only on carer experiences but also focused on support and coping. The study also included carers in various roles, including parents and children, in addition to partners. This was with the intention of improving future support for carers. There were two aims of the study. Firstly, to gain insight into the experiences of carers as they cope with their loved one’s mental illness, including information around warning signs, coping methods, lifestyle factors and the changes in stressors throughout different phases of the illness. Secondly, the study sought to better understand what help and information carers need to take care of both themselves and the person they are caring for.

Context and study design

This qualitative study was part of a wider mixed-methods study that aimed to better understand the experiences, coping and support of informal carers of people with BD. As part of the wider study, eligible participants completed a 20–30-minute online survey on the REDCap survey platform, which asked for demographic information, including their identifying gender, age and relationship to the person with BD, and also asked about their caring experiences. A phenomenological approach [ 42 ] was taken to this qualitative study, where meaning about the experiences of carers of people with BD was sought based on the descriptions provided by people with this lived experience. All procedures were approved by the Human Research Ethics Committee at the University of Newcastle (H- 2020–0436).

Sampling and recruitment

Participants were recruited purposively through social media advertising. Upon completion of the wider survey on REDCap, all participants were asked if they would like to be contacted for a semi-structured phone interview (present study) regarding their caring experiences. Participants who indicated “yes” provided specific consent related to this study.

Participants were eligible for the study if they were a carer of someone with a DSM-5 diagnosis of BD, aged 18 years and over and currently living in Australia. Participants were excluded if they had insufficient English to provide informed consent and be interviewed. A ‘carer’ was defined as the main support person for the individual and may include a spouse, parent, friend, sibling, foster carer or relative who is their main support person [ 6 ].

Participants

The demographic characteristics of the fifteen participants (final sample) are displayed in Table 1 . The participants ( n = 15) were recruited purposively via a Facebook advertisement as part of a wider study. Overall, seventeen participants opted into the phone interview through REDCap. Of these, two did not reply to the two attempts made to contact them via their preferred contact method and therefore were not interviewed.

• PPT PowerPoint slide
• PNG larger image
• TIFF original image

https://doi.org/10.1371/journal.pone.0280059.t001

Interview protocol and procedure

After providing consent, BS contacted the participants by their preferred contact method to set an appointment time for the phone interview. At the beginning of the interview, BS obtained verbal consent from participants, discussed confidentiality and explained the study’s overall purpose. Each interview was recorded with the participants’ consent using a voice recorder. Participants were given the option to read and edit their transcript once produced. Each interviewee was given a participant identification number, and personally identified information was kept separate from the transcripts. Access to identifiable data was only given to members of the research team and was stored securely at the University of Newcastle, Australia.

The leading author (BS), a female second-year Clinical Psychology Masters student in partial fulfilment of the requirements for the Master of Clinical Psychology, conducted the interviews. BS had previous research experience in conducting qualitative interviews. Each interview ranged from 21–49 minutes ( M = 34 minutes). Participants were remunerated with a $20AUD digital gift card following the interview. Once completed, the interviews were transcribed verbatim using the Outscribe transcription service. This external transcriber was bound by a confidentiality agreement, and this information was included in the Participant Information Statement.

The semi-structured interview was based around a set of seventeen broad, open-ended questions ( Table 2 ), designed to understand the experience of the person caring for someone with BD and what may be helpful to them. The questions were divided into different sections, including background information, experiences, coping, further information needed and program development. In addition, the interviewer used prompts to explore the participants’ experiences more deeply. The interview schedule was based on a modified version of the Orford et al. [ 43 ] approach, which was previously used to interview family and friends of people using alcohol and other drugs. Where possible, participants were encouraged to discuss their answers in a narrative format and question order was changed and rephrased accordingly. Using this approach, interviewees were asked to talk about their experiences, coping mechanisms, lifestyle factors and social support in a way that was less structured and allowed the interviewee to openly share their experiences and their story [ 43 ].

https://doi.org/10.1371/journal.pone.0280059.t002

Data analysis

Braun and Clarke’s [ 44 ] reflexive thematic analysis framework guided the theme development process. The reflexive approach was chosen because it allowed for a flexible and organic way of exploring participants’ experiences and stories. During the interviewing stage, BS discussed reflections with TH and FKL during regular supervision sessions to guide the meaning-making process. BS took notes in a reflective journal during the interviews, and discussions were had with TH and FKL to further guide this reflection.

Each of the three researchers, BS, TH and FKL, familiarised themselves with the data independently by carefully reading and re-reading the transcripts and coding five transcripts each. Themes and patterns in the data were then identified and discussed. These discussions commenced with a “bracketing” process, whereby BS, TH and FKL first identified expected results or ideas and then discussed putting them aside to focus on the actual lived experience and reflections of the person in the interview. Following each discussion, the authors assessed whether new themes had been identified from the interview discussed and where this had occurred, agreed that more interviews should be conducted.

Once all interviews had been completed, the transcripts were coded in full by BS and collated using the NVivo software to manage the data. The three researchers then decided on the naming and stories related to these relevant themes and developed these into a table. The output from the thematic analysis consisted of several key themes and subthemes. BS added the constructed themes and subthemes into the MIRO online whiteboard. Following further reflection and supervision with TH and FKL, BS re-reviewed the themes at this stage to construct five key themes that were representative of the experiences of carers.

Thematic analysis: Overview of themes

Overall, informal carers described that there were many challenges associated with caring for someone with BD, several barriers in accessing support and suggested ways in which future support can be improved. Through the process of analysis, five themes were identified: Separation of the person and the disorder, carer health and coping strategies, unpredictability and variability of symptoms, carer disillusionment and silencing, and story sharing and support needs. The themes identified are displayed in Table 3 .

https://doi.org/10.1371/journal.pone.0280059.t003

1. Separation of the disorder and the person.

Many of the interviewees described their experience of their loved one being diagnosed with BD as a long and complex process. Thirteen of the participants recognised that separating the person from the illness allowed them to maintain a better relationship with the person and preserve their own wellbeing. Carers identified that they needed to “Keep remembering it wasn’t personal” when the individual was experiencing a BD episode and, their behaviour or words were out of character. One participant described the process of separating the illness from his wife as:

“Just see it as the illness, it’s the illness playing up and not the person playing up.” (P3, husband, aged 57 years)

Carers’ responses indicated that understanding the biological nature of the disorder was imperative in separating the person from the illness and having empathy for the experience of the person they are caring for. A partner noted that for her, it was critical to engage in conversation with her boyfriend to understand his experiences, his behaviours and how to best support him:

“Yeah, into their shoe’s kind of thing… creating a dialogue with your partner, or with the person you’re caring for. Asking them, “What is that experience for you? Can you explain how this affects you?”, rather than the way it affects me.” (P15, girlfriend, aged 25)

Whilst carers were able to acknowledge when the behaviours they were seeing were related to the disorder, they also highlighted the significance of maintaining strong boundaries and knowing when to “remove yourself from a situation” when the disorder got in the way of their wellbeing. A few of the carers expressed a sense of grief and confusion related to the diagnosis of their loved one and the process of understanding and separating what parts of a person’s behaviour were the disorder and what parts were the person themselves.

2. Carer health and coping strategies.

All of those interviewed conveyed that the caring role has had a detrimental effect on their mental health and quality of life, reporting increased anxiety symptoms, depressive symptoms, stress and carer fatigue. Some of these carers reported the exacerbation of previous mental health issues, and others reported mental health issues that were not previously present. In addition to reporting that caring had an impact on their mental health, carers also reported an effect on their physical health, diet, exercise behaviours and substance use behaviours. One interviewee described the difficulties she had with putting on weight whilst her focus was on caring for her husband and his wellbeing:

“Because of constant exhaustion and everything, I put on weight, not having energy to exercise, comfort eating and, yeah, and the rest of it.” (P9, wife, aged 42 years)

Another participant described how she has turned to alcohol at times to cope:

“So, I’ve gone total down bad dark holes, and then I’m drinking, and just totally like… fully just like I need to block my emotional pain because I don’t have room to deal with my own stuff.” (P15, girlfriend, aged 25 years)

Eight of the carers reported seeking psychological or pharmacological assistance for themselves. For some of the carers, the caring role intensified mental health symptoms that they were already experiencing but for others, it was the first time they had had any mental health issues. In order to maintain their wellbeing and protect their mental and physical health, nine carers reported the importance of self-care and the positive effects of nature, exercise, socialising, creative hobbies, yoga and meditation. The positive effects of self-care are described by one participant:

“I think for me, just managing my general health is really important. One of the main things that I used to manage my anxiety is exercise, so just trying to maintain that routine and maintain that exercise regime and continuing to eat, and eat well, and then, just trying to keep some elements of your life.” (P8, friend/housemate, aged 28 years)

For many participants engaging in self-care was not something that had always come easily but something they had learned to do over time to reduce burnout and stress from the role. Another aspect of self-care that some carers learnt over time to reduce stress and burnout was enforcing boundaries. For example, one interviewee describes the boundaries she and her partner have in place to maintain her wellbeing and a positive relationship:

“It’s like peace of mind as well. He’s not allowed to message me while he’s at work, because that can sometimes, I don’t know, make him feel, if I don’t write back, or if he’s in a weird state, he will think something else is going on, if he reads my tone the way he wants to read it. It’s like that thing of like somebody else is talking to him that’s not me. So, it’s just a dangerous thing, so we don’t do that.” (P5, wife, aged 35 years)

3. Unpredictability and variability of symptoms.

One of the biggest challenges of being a carer of a person with BD was managing the unpredictability and variability of symptoms. Participants reported an extensive range of hard-to-manage symptoms and behaviours including, suicidal ideation, anger, sexual indiscretions, excessive spending and running away. Overall, all fifteen participants used descriptive and metaphorical language to describe the chaotic up-and-down nature of the symptoms of BD. One interviewee described this as:

“Very emotional. Extremely hard to deal with at times. Just a rollercoaster, is probably the best way to describe it. It’s like being on a rollercoaster” (P13, mother, aged 54 years)

Carers described that one of the hardest and most unpredictable symptoms to manage was violence, irritability, anger and the “hatred they can show towards you.” Another symptom reported as having a high burden on carers was managing suicidal ideation and fear of their loved one dying. This fear was often exacerbated by incidences where the person they were caring for had left the house without warning, which was reported by several interviewees, as one husband described:

“She can go up for a walk up to the hospital, or anything up to six kilometres away, trying to get help without telling me. And so, I wake up in the middle of the night and she’s not in bed, not in the house and whatever, and spend half the night looking for her. Then she turns up the next morning.” (P3, husband, aged 53 years)

Carers reported that they experienced higher stress when their loved one would end up hospitalised, with many reporting several hospitalisations. Eight of the participants reported that the person they were caring for had issues with alcohol or other drugs. With one participant expressing that the person would use alcohol/other drugs to self-medicate the symptoms, they were having.

Eleven of the carers described the symptoms of BD having an impact on their relationship. One participant expressed her concerns about her relationship with her partner with BD and stated:

“Because he can’t control himself, I don’t think I should have, I think it would be irresponsible for me to have children with him.” (P5, wife, aged 35 years)

In addition, four interviewees described increased stress related to sexual indiscretions and out-of-character sexual behaviours during mania, with one partner describing her partner becoming romantically involved with someone else whilst in an inpatient unit:

“He kind of started a relationship with someone else while he was in there and he was asked to leave.” (P9, wife, aged 42 years)

Nine carers described the stress related to excessive financial spending and impulsivity with finances. A wife expressed:

“When I look back, she spent $50,000 on shoes within a six-month period.” (P1, wife, aged 39 years)

Participants described that the unpredictability of symptoms led them to constantly be in flight or fight mode, hyper-vigilant, and experiencing increased anxiety around what would come next. One carer expressed:

“I was always on edge, just always ready to, like, go into defensive mode.” (P9, wife, aged 42 years)

Another participant described this as:

“I used to walk around on eggshells, be too afraid to say anything.” (P13, mother, aged 54 years)

Carers explained that over time they were able to adjust, and one way they learnt to better manage the unpredictability of the disorder is to communicate well with each other, as a daughter described:

“Like deal with the uncomfortable situations that are there before it gets worse and it blows up bigger than it should have been.” (P6, daughter, aged 20)

Whilst many of the carers described negative aspects of the unpredictable caring role, six of the carers reported themes related to becoming more empathetic, compassionate, and patient from their caring role. A few carers also reported that they liked parts of the person’s personality that were related to BD, including increased creativity and charisma. A wife described her partner with BD I:

“A bit of a genius really. But, obviously, with that comes a whole bunch of other stuff.” (P1, wife, aged 39 years)

4. Carer disillusionment and silencing.

Overall, carers reported feeling disillusioned by their caring role and the lack of support their friends and family, society, and healthcare professionals offered to them. Carers expressed a heightened need for inclusivity in both the intervention and decision-making processes for their loved ones and a desire for an increased awareness of what is going on so they can better support the person they are caring for. Carers reported that they were often disillusioned by advice given to the person with BD by healthcare professionals who often only focused on the person with BD rather than giving advice that was congruent with wider systems in which the person lives. As a wife cited:

“In that first part…she had to look after herself, and do this and do that, and it was all about her. And it was very selfish. And I’m like, you know what? You don’t exist in a bubble. You don’t. You exist in a family and they’re just telling you how to deal with it. You know, like, ‘Make sure you get 15 hours of sleep or whatever.’ Well, that’s great but you live with a family of people. You know, the house can’t stay silent. We can’t all just walk on eggshells for the rest of our life because you need, you know, I think they don’t tell bipolar people enough how to exist in a world.” (P1, wife, aged 39 years)

Carers discussed how their needs were often "forgotten” and “disappear,” with the primary focus in healthcare being on the person with BD. Additionally, interviewees expressed concern regarding the missed opportunities for healthcare staff to offer support and check in on their wellbeing, as one individual described:

“I go to all of her psychiatry appointments…I’m genuinely surprised that there was no mention or even a question of, how are you coping? Are you doing okay? Is there any supports that we can give you? That was really quite shocking. Like I said, if that person supporting them isn’t doing the best or doesn’t know how to handle the circumstance, it’s like a recipe for disaster” (P14, wife, aged 32 years)

Many carers were also frustrated with the healthcare system, citing issues regarding medication, poor treatment, policy issues, wrong diagnoses, and the cost. Thirteen of the interviewees discussed themes related to carer silence, feeling “invisible,” and not discussing their experiences with others. This was related to experiences of stigma, unhelpful responses from family and friends and guilt related to discussing the diagnosis with others. A daughter of someone with BD expressed the battle she faced in wanting to talk about her experiences but also keep the confidentiality of the person with BD:

“That was the hardest to navigate when I was younger. I didn’t quite understand how to talk about it with anyone else in a confidential way. Yeah, I think the confidentiality thing has been tricky as well… finding it hard to talk to anyone else about it besides close family members can be a bit isolating.” (P4, daughter, aged 25 years)

Another daughter of someone with BD described that her parents had not openly talked to their children about the parents’ diagnosis as she described:

“I think they tried to be really sheltered from me but like I’ve heard stories.” (P6, daughter, aged 20 years)

A few participants explained that when they had told family and friends in the past, they had unhelpful responses that deterred them from discussing with other people in the future. As one partner explained:

“I learnt to just totally divulge that information with the people that I trusted.” (P14, wife, aged 32 years)

Some interviewees whose parents had BD experienced changes in their roles and increased responsibilities. A daughter described a role reversal between herself and her father, who had BD,

“Yeah, yeah it’s like he’s meant to be the father figure but kind of like I’m better at helping myself than he is so yeah.” (P6, daughter, aged 20 years)

Ten interviewees discussed themes related to the stigma of the disorder experienced by both the person with BD and their carer. A mother expressed her experiences with stigma:

“This bizarre illness that is harder to talk about with people. You don’t just bring it up over dinner with his family and say … he was very manic yesterday, and he did something weird. Whereas if he had something else, like diabetes…that would be more reasonable to talk about, and his family’s really weird about mental illness.” (P5, wife, aged 35 years)

Due to the stigma and isolating nature of the caring role, many of the participants reported that it was even more important for people to reach out and seek support.

5. Story sharing and support needs.

Eight of the carers reported themes around their desire to want to help other carers at the beginning of their caring journey and advocate for better support and policy changes, with one mother stating:

“I’ve written to the Shadow Health Minister, I’ve done so many things, though I don’t see anything changing quickly so I feel that it’s my responsibility to help where I can…To try and help other people as well.” (P7, mother, aged 40 years)

Each participant had a different set of experiences with their caring role, one interviewee articulates this in her simple but profound statement:

“Yeah, because everybody’s story will be different and experience will be different as well.” (P10, father and brother, aged 51)

All participants endorsed the need for further support for carers and their families, with some participants describing the need for financial support, others the need for online support and some for in-person support. Many participants expressed that support should include other carers and their experiences, as it would help reduce the isolation they feel. One carer expressed that peer support would be most beneficial with other carers of people specifically with BD, describing her experiences with a support group:

“I went for my first session, but they were all women over 60 whose husbands has Alzheimer’s so I couldn’t relate. There was no, it just wasn’t helping me at all, it was just awful.” (P7, mother, aged 40 years)

Fourteen participants mentioned a need for greater practical support, including information about medication, emergency information, the types of BD, symptoms of BD, how to talk about BD with children and practical money tips. Many of the participants had to seek out more information themselves via the internet, as one interviewee explained:

“Everything we know about it; we’ve looked up ourselves.” (P5, wife, aged 35 years)

Fourteen carers reported that it would be beneficial for a support program to include coping strategies and psychological skills, including managing stress, how to react in different situations, self-care ideas and enforcing boundaries. For example, a coping strategy one interviewee described utilising was worry-time:

“I’ve gotten really good at learning to compartmentalise stuff. When you’re in this position you need to learn to do that. So, I set aside times …if she’s in a bad way or I see the warning signs that she’s on her way… I assign myself a certain amount of time to worry.” (P14, wife, aged 42 years)

Six of the carers discussed themes related to the affordability of support and the need for financial support as well, as a partner described:

“Like my dad paid for us to up our private health insurance so that he could go straight in. Yeah, my concerns about accessibility for people, it’s like we don’t have a lot of money but what do people who have less than us do? And that’s really concerning.” (P9, wife, 42 years)

This study aimed to gain further insight into the experiences of informal carers of people with BD and to understand what additional support and information they need for both their own self-care and the care of the person with BD. Overall, the findings show the chronicity and complexity of the role of being an informal carer of someone with BD and the burden this role can have on an individual. The findings also highlight the need for increased practical, online, psychological and financial support for informal carers of someone with BD.

BD is a cyclical condition that is both chronic and relapsing making, the stressors both long-term and acute [ 2 ]. As such, some of the stressors facing carers can be unpredictable and change quite quickly [ 7 ]. A central way in which the experiences of people with BD diverged from the experiences of carers of people with other mental health issues [ 45 ] and carers of people with a chronic or acute health condition [ 46 – 49 ] was in the unpredictability and variability of symptoms. Whilst there were a lot of common themes discussed by each interviewee in our study, the pattern of these themes discussed varied for each person, highlighting the unique story and experience of each carer. This fits with previous international findings by Kargar et al. [ 13 ], that carer burden and experiences can be influenced by a range of different individual, social and organisational aspects. This is an important consideration because it means that the experiences, support and needs of each carer will be different, and any intervention will need to be tailored to the needs of the carer and the person they are caring for. It also indicates that any practical information and psychoeducation should cover the various needs and experiences of carers.

BD is a condition that is highly stigmatised compared with more common mental illnesses, including depression and anxiety [ 16 ]. The stigma surrounding BD and the associated shame and guilt felt by carers when discussing their loved one’s mental health with others means that a lot of the interviewees have not openly discussed their experiences before, either formally or informally. In comparison to people with a less stigmatised mental health disorder [ 45 ] or a health condition [ 46 – 49 ], carers of people with BD experience greater stigma and a greater reluctance to discuss their experiences. Many of the interviewees reported being silent and not openly discussing their caring experiences and struggles. They also were reluctant to seek out support due to the stigma and negative experiences in the past discussing these issues with family, friends and healthcare providers. Whilst the stigma related to BD is greater than that of other conditions, including depression and anxiety [ 7 ], it is similar to carers of people using methamphetamine [ 11 ] and carers of people with schizophrenia [ 9 ]. As a result, it is expected that the silencing of carers with BD would be similar to carers of people using methamphetamine or with schizophrenia. The lack of awareness of the experiences of BD carers can further perpetuate stigma.

It appeared that the semi-structured interview’s storytelling nature allowed participants to share experiences they had rarely talked about with others. As a result, this may have been therapeutic in nature for the participants in and of itself and is a consideration for those developing support programs for carers in this context. In considering future improvements in the provision of peer support, it would be beneficial in the development of any online program to add a component where participants can share and reflect on their personal story. Additionally, it would be beneficial to see the stories of others to see that their experiences are both similar and unique to other carers of people with BD. In-person support could also benefit from incorporating an opportunity for individuals to share and reflect on their experiences, whether this is in group or one-on-one counselling sessions.

Whilst there has been some previous research completed on the experiences of loved ones and professionals [ 4 , 12 – 14 , 39 , 41 ] caring and supporting people with BD, the body of research overall is limited especially, in an Australian context. This study provides insights not only into the experiences of carers but also explores coping mechanisms, barriers and further support that has important insights for the implementation of future support for carers. One of the strengths of this study is that the interviewees are from a wide range of ages (20–60 years), a range of different caring roles, including partners, children and parents and there is a mixture of informal carers for both people with BD I and BD II. As such, the data captures a broad range of themes related to caring experiences. The qualitative nature of the study provides an in-depth insight into the experiences of people caring.

An important research implication that emerged through this study, was that whilst there were broad similarities in experiences, the experience of each carer was distinctly unique and complex. Whilst this study is representative of a broad range of experiences including, type of BD, gender of carer, caring role, time since diagnosis and age of carer, it may be beneficial for future research, to focus on narrower experiences to better understand differences in experiences. For example, further research could focus specifically on one type of carer relationship, for example, solely focusing on romantic partners. Overall, there is a need for research to consider more specific condition-focused supports for carers.

Clinical implications

Whilst women are overly represented in the interview participants, this is reflective of the increased role women have in caring roles more broadly in society [ 22 ]. It also indicates the increased need to support female carers and reduce the discrepancy of the burdens of caring. Many participants reported that they were never offered support or comprehensive psychoeducation by healthcare providers when they were able to attend appointments with the person they were caring for, and few were included in appointments. This highlights the need for increased awareness of the support needs of BD carers and their families by healthcare professionals. As such, BD carers should be offered psychological support and psychoeducation by healthcare providers, including carer services such as ARAFMI [ 30 ]. Carers reported difficulties with treatment plans and suggestions from healthcare professionals being impractical for the wider needs of the family “unit” and ignoring responsibilities and roles the person with BD had, for example, as a parent. As a result, in the provision of support, it would be helpful to consider the greater “unit” or system in which the person with BD operates when making suggestions.

Overall, the themes reported by participants in this study were consistent with previous findings by Chatzidamianos et al. [ 12 ], that whilst relatives’ involvement in care benefited consumers, relatives and the health system, notable barriers including accessibility and communication often prevented this. The experiences reported were also consistent with previous qualitative findings by Vargas-Huicochea et al. [ 14 ], that a carer-integrated approach is needed, to improve the experiences of both the person with BD and their carer. Specifically, the findings indicate the greater need to include informal carers of people with BD in the treatment process as well as in decision-making. This is in line with previous qualitative interviews with informal carers of people with chronic health conditions including, stroke [ 46 ], dementia [ 47 ], heart disease [ 48 ] and cancer [ 49 ] and other mental health conditions [ 45 ].

Web-based interventions, in general, are cost-efficient and effective [ 50 , 51 ] and would prove an affordable option for carers of people with BD who may not seek out in-person treatment for themselves. Berk et al. [ 2 ] have developed a comprehensive online guide for carers that was informed by a Delphi study including consumers, carers and clinicians [ 33 – 35 ]. However, there remain gaps in services for an online CBT program for carers of someone with BD. Online CBT interventions have been found to be effective for people with BD [ 40 ] but have not yet been developed for carers. There is some evidence [ 52 , 53 ] that online interventions for carers of mental health disorders can be effective, engaging and acceptable. A critical consideration for program delivery is that carers of people with BD have been found to access primary care services more than mental health services for their psychiatric symptoms [ 54 ]. Another consideration is that due to the nature of BD stigma, it is essential that future support consider options for support from people with similar experiences.

When a carer has increased wellbeing and reduced mental health symptoms, it increases their ability to care for the person with BD, which will help improve their BD symptom management [ 25 ]. As such, carers play a very important role in the treating team for someone with BD. Interviewees identified that it was important for them in managing their relationship with the person, to be able to separate the person from the disorder. Consequently, informal carers would benefit from clinicians providing increased psychoeducation around to help them to be able to identify what behaviours are related to the symptoms.

Limitations

A limitation of this study was that people who could not read English were excluded from participation. As stigma can be influenced by culture [ 20 ], this data and the experiences of caring may not be representative of all cultures. The study is also limited to an Australian-only population and did not include anyone who identified as Aboriginal or Torres Strait Islander.

Conclusions

Overall, this study revealed the complexity of being an informal carer for someone with BD. The qualitative findings emphasise that the cyclical and unpredictable aspects of BD can mean that the stressors facing carers change quite often and therefore lead to carers experiencing hypervigilance and anxiety related to what is coming next. This unpredictability impacts their burden and contributes to feelings of exhaustion and anxiety. The findings also highlight that stigma related to BD and associated shame and guilt mean that carers are often silent about their experiences and do not often talk to others about them. Additionally, in the qualitative interviews, carers indicated that they were disillusioned with current support and that there were many challenges still present in access to support and reducing carer burden. This indicates a need for greater awareness of the need for carer support.

Acknowledgments

The researchers would like to thank the participants for sharing their experiences.

• 1. National survey of mental health and wellbeing: Summary of results [Internet]. Gov.au. 2008 [cited 2021 Nov 9]. Available from: http://www.abs.gov.au/AUSSTATS/[email protected]/mf/4326.0
• 2. Berk L, Jorm A, Kelly C, Berk M, Dodd S. A guide for caregivers of people with bipolar disorder [Internet] University of Melbourne; 2010 [cited 2021 Nov 11]. Available from: https://bipolarcaregivers.org/wp-content/uploads/2010/07/guide-for-caregivers.pdf
• View Article
• PubMed/NCBI
• Google Scholar
• 5. Commonweath of Australia. National Carer Strategy [internet] Commonwealth of Australia; 2011[cited 2021 Nov 12]. Available from: https://www.carerstas.org/wp-content/uploads/2017/06/2011-National-Carer-Strategy.pdf
• 6. Department of Social Services. A guide for Australian Public Service Agencies for the implementation of the Carer Recognition Act 2010. [Internet] Department of Social Services; 2016 [cited 2021 Nov 12]. Available from: https://www.dss.gov.au/sites/default/files/documents/05_2016/carer_recognition_act_2010_guidelines_april_2016.pdf
• 24. Australian Institute of Health and Welfare. Informal carers [Internet]. Canberra: Australian Institute of Health and Welfare, 2021 [cited 2022 Sep. 30]. Available from: https://www.aihw.gov.au/reports/australias-welfare/informal-carers
• 32. Carer & Family Support [Internet]. Com.au. [cited 2021 Nov 11]. Available from: https://arafmi.com.au/carer-family-support/
• 42. McWilliam C. Chapter 12: Phenomenology. In: Bourgeault I, Dingwall R, De Vries R, editors. The SAGE Handbook or Qualitative Methods in Health Research. London: SAGE Publications Ltd; 2010. p. 229–248.

Academia.edu no longer supports Internet Explorer.

To browse Academia.edu and the wider internet faster and more securely, please take a few seconds to  upgrade your browser .

Enter the email address you signed up with and we'll email you a reset link.

• We're Hiring!
• Help Center

Researching lived experience in health care: Significance for care ethics

2011, Nursing Ethics

Related Papers

EASA Network of Ethnographic Theory

Patrick McKearney

This short bibliography engages the anthropology of care from the perspective of ethics, offering routes into considering the wide ranging and challenging questions that ethnographic work on caring relationships raise.

Andries Baart

This article aims to initiate a discussion on the demarcation of the ethics of care. This discussion is necessary because the ethics of care evolves by making use of insights from varying disciplines. As this involves the risk of contamination of the care ethical discipline, the challenge for care ethical scholars is to ensure to retain a distinct care ethical perspective. This may be supported by an open and critical debate on the criteria and boundaries of the ethics of care. As a contribution, this article proposes a tentative outline of the care ethical discipline. What is characteristic of this outline is the emphasis on relational programming, situation-specific and context-bound judgments, a political-ethical perspective, and empirical groundedness. It is argued that the ethics of care is best developed further by means of an intradisciplinary approach. Two intradisciplinary examples show how within the frame of one discipline, other disciplines are absorbed, both with their body of knowledge and their research methodology.

BMC Palliative Care

Silvia Tanzi

Fran Porter

This paper employs the ethics of care debate to present primary qualitative research on the lived experience of care-giving and care-receiving that was conducted under the auspices of The Equality and Social Inclusion in Ireland Project.

Claudia Ienco

Ethics of care is a normative theory of ethics based on particular relationships between people, rather than universal principles. It is put forward as a rival theory to those based on universal principles, including utilitarianism and Kantianism. Ethics of care proponents argue that we have duties of care toward others, and that these duties of care are more crucial when the people for whom we care are closer to us (especially family members), or when we have taken responsibility for them (e.g. patients or children in daycare). Caring relations are recognised, including caring-for and cared-for relations between moral agents. The theory as a whole allows for partiality in our actions in cases when they involve people for whom we care. Ethics of care proponents criticise normative ethical theories - and the field of ethics in general - on how much they may overlook our duties of care and inclinations to care. All proponents of ethics of care share these foundational claims. Claims about justice, justification for actions and feminist ethics differ among the theory’s proponents. This arguably makes two versions of the theory distinguishable: the Gilligan/Noddings version and the Slote/Held version. This thesis outlines the ways that ethics of care can be useful in practice and the ways that it should be further developed.

Carolyn Ellis

In this chapter, I address how we as researchers do compassionate research that has as a goal to honor, care for, and support others we interview. What does it mean, how does it feel, and what decisions have to be made as we form relationships and relate to our participants moment by moment, situation by situation? What role does our own self-examination play in doing this well? Does compassion require that we bring agency or a sense of regeneration to the lives of our participants? I approach these questions from a relational ethics of care. I begin with the discussion that took place after my presentation. For guidance in addressing the issues raised there about compassionate research, I call on work on ethics from feminist, oral history, and autoethnography scholars, as well as from those writing about relational ethics in health care. I discuss concerns that arise in doing research with those we already know or with whom we form relationships during the research process, as is the case in my work with Holocaust survivor, Jerry Rawicki. To open up a conversation about how compassionate research from a relational ethics of care might take place in practice, I end with a story that portrays my relationship with Jerry as we visit Treblinka, where his family members were murdered. Complete reference: Ellis, C. (2017) “Compassionate Research: Interviewing and Storytelling from a Relational Ethics of Care,” The Routledge International Handbook on Narrative and Life History, edited by Ivor Goodson, Molly Andrews, and Ari Antikainen. Routledge, pp. 431-445.

Nursing Ethics

Elisabeth Hall

Nurse researchers engaged in qualitative interviews with patients and spouses in healthcare may often experience being in unforeseen ethical dilemmas. Researchers are guided by the bioethical principles of justice, beneficence, non-maleficence, respect for human rights and respect for autonomy through the entire research process. However, these principles are not sufficient to prepare researchers for unanticipated ethical dilemmas related to qualitative research interviews. We describe and discuss ethically challenging and difficult moments embedded in two cases from our own phenomenological interview studies. We argue that qualitative interviews involve navigation between being guided by bioethics as a researcher, being a therapist/nurse and being a fellow human being or even a friend. The researchers’ premises to react to unexpected situations and act in a sound ethical manner must be enhanced, and there is a need for an increased focus on the researchers’ ethical preparation and ...

Caroline Favron-Godbout

Background Moral questions are vital questions because they concern what is esteemed to be the best action, the best choice and, ultimately, the best life to live. Health ethics which aims to address these moral questions has contributed to moving ethics toward more experience-based and user-oriented ethics theory and methodology. Despite this, current approaches remain an incomplete lever for human development and flourishing. This context led us to imagine and develop the stance of a “living ethics”, a radically participatory and situated form of ethics which we describe in this inaugural collective and programmatic paper. Methods We followed a participatory discussion and writing process known as instrumentalist concept analysis. Initial informal local consultations were undertaken about pragmatic ethics, and from these conversations emerged the current project. An exploratory literature review was undertaken, and a diverse working group of 21 co-authors was assembled. The workin...

Theoretical medicine and bioethics

Stuart Finder

While many have suggested that to withdraw medical interventions is ethically equivalent to withholding them, the moral complexity of actually withdrawing life supportive interventions from a patient cannot be ignored. Utilizing interplay between expository and narrative styles, and drawing upon our experiences with patients, families, nurses, and physicians when life supports have been withdrawn, we explore the changeable character of &quot;boundaries&quot; in end-of-life situations. We consider ways in which boundaries imply differences--for example, between cognition and performance--and how the encounter with boundaries can generate altered meanings important for understanding decisions and actions in these contexts. We conclude that the reliance on mere roles to support the moral weight of withdrawing medical interventions is inadequate. Roles that lead us to such moments are exceeded by the responsibility encountered in such moments. And here, we suggest, is the momentous char...

Quality in Ageing and Older Adults

Tamara Backhouse

Loading Preview

Sorry, preview is currently unavailable. You can download the paper by clicking the button above.

RELATED PAPERS

muna sharma

Physiotherapy Research International

Bruce Greenfield

Carlo Leget

Clinical Ethics

Ann Gallagher

Marianna Theochari

Guy Widdershoven , Rouven Porz , Elleke Landeweer

Linus Vanlaere , Chris Gastmans

Medicine, Health Care and Philosophy

Guus Timmerman

Kristina Ma

Casey Catlin

Transplantation Proceedings

Journal of Advanced Nursing

Anders Lindseth

Anthony Wrigley

Patrick Schuchter

BMC Medical Ethics

Kristian Pollock

Health Care Analysis

Tove Pettersen

Nathan Emmerich

Online Journal of Health Ethics

Vanessa Lopez - Littleton

American Anthropologist

Tamara Kohn

Journal of Pain and Symptom Management

Elisa Rapaport

Health Care for Women International

Nila Ginger Hofman

Ruth Ludwick

mare knibbe

RELATED TOPICS

•   We're Hiring!
•   Help Center
• Find new research papers in:
• Health Sciences
• Earth Sciences
• Cognitive Science
• Mathematics
• Computer Science
• Academia ©2024

An official website of the United States government

The .gov means it’s official. Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

The site is secure. The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

• Publications
• Account settings

Preview improvements coming to the PMC website in October 2024. Learn More or Try it out now .

• Advanced Search
• Journal List
• BMC Psychiatry

Lived experience research as a resource for recovery: a mixed methods study

1 School of Health Sciences, University of Sydney, Sydney, NSW Australia

Katherine M. Boydell

2 Black Dog Institute, Sydney, NSW Australia

Francesca Coniglio

3 Mental Health Drug & Alcohol, Northern Sydney Local Health District, Sydney, NSW Australia

Trang Thuy Do

Leonie dunn.

4 St George and Sutherland Mental Health Services, South Eastern Sydney Local Health District, Sydney, NSW Australia

Katherine Gill

5 Consumer-Led Research Network, Sydney, NSW Australia

Helen Glover

6 Enlightened Consultants, Brisbane, Qld Australia

Monique Hines

Justin newton scanlan, barbara tooth.

7 Upfront Leadership, Sydney, NSW Australia

Associated Data

The dataset for the qualitative interviews analysed during the current study are not publicly available as they consist of audio files and transcripts from in-depth interviews which, even with pseudonyms, might potentially allow individual participants to be identified. Deidentified data from the quantitative analysis are available from the corresponding author on reasonable request.

Lived experience research is conducted by people who have experience of mental health issues and is therefore better placed than more traditional research to illuminate participants’ experiences. Findings that focus on identifying enablers of recovery from a lived experience perspective have the potential to assist people in their recovery process. However, this lived experience research is often difficult to find, access and interpret. We co-produced user-friendly and engaging resources to disseminate findings from six lived experience research studies. This paper seeks to answer the research questions: a) Did exposure to lived experience research increase hopefulness for participants?; and b) How else did interacting with lived experience research resources influence participants’ lives?

Thirty-eight participants were introduced to four resources of their choosing by peer workers over a four-week period. The helpfulness of resources was evaluated using mixed methods, including a quasi-experimental analysis of change in hope, an anonymous survey and in-depth interviews.

Findings indicated that the resources promoted hope, but that increases in hopefulness may not be seen immediately. Other impacts include that the resources: encouraged helpful activities; provided a positive experience; increased valued knowledge; encouraged people to reflect on their journey and think constructively about mental health issues; helped people to feel less alone; and assisted people to explain their situation to others.

Conclusions

The research suggests the potential usefulness of lived experience research resources, presented in user-friendly formats, in the lives of people who experience mental health issues and implies a need to nurture this type of research.

Lived experience research in mental health is research that illuminates the perspectives and experiences of people who live with mental health issues and is conducted either by researchers with their own lived experience or in collaborative research teams that include people with lived experience [ 1 , 2 ]. This paper investigates the usefulness of lived experience research in the lives of people living with mental health issues.

The importance of lived experience research in mental health is increasingly recognised and usually conceptualised in terms of three major benefits. First, consumer rights activists, using the slogan of “nothing about us without us” have argued that inclusion in research is a human right and a social justice issue [ 3 ]. Second, it can produce better quality research by enhancing methodological sensitivity, data accuracy, validity of results, and overall relevance to service users e.g., [ 4 – 6 ]. Third, people with lived experience have reported deriving benefits from doing research such as satisfaction, skill development, empowerment, and hope [ 4 , 6 ]. Lived experience researchers are increasingly adopting leading roles in conceptualising and conducting research in mental health.

Findings from lived experience research have the potential to be helpful to people in their recovery journeys. Numerous studies have reported the benefits of learning from the wisdom, strategies, challenges and successes of others e.g., [ 7 ]. Hope, a critical component of recovery [ 8 ], is also a major benefit of being exposed to the stories and experiences of others in similar situations. A recent study examined the types of experiences that people living with mental health issues described as igniting and maintaining hope [ 9 ]. Two sources of hope were particularly relevant to lived experience research. First, hearing positive stories of others’ experiences was important. As one participant stated: “the consumers’ voice was hope and healing”. Second, hope was promoted by learning gained from others with lived experience, such as “the key tips and strategies that other peers discussed.”

Observing peers who are living well and reading or listening to individual narratives of recovery are important ways in which people learn from each other and derive hope. However, lived experience research has the potential to bring together the stories of a variety of different people to provide a range of ideas and a bigger picture on particular issues, thus contributing to an individual’s store of resources for recovery.

While the researchers were unable to locate research about the direct use of lived experience research by people living with mental health issues, our collective experience has indicated that many who are not themselves involved in user-led or collaborative research, do not even know that it exists, let alone how to access the findings. Little is known, therefore, about how useful people might find lived experience research in their daily lives.

Our research team, consisting of researchers with and without lived experience of mental health issues, set out to address this issue. As research is rarely presented for a lay readership, we developed a range of user-friendly formats to disseminate lived experience research findings to people living with mental health issues.

This paper seeks to answer the following research questions:

a) Did exposure to lived experience research increase hopefulness for participants?

b) How else did interacting with lived experience research resources influence participants’ lives?

Study design

We collaborated with peer workers and final year design students to develop a suite of six lived experience research resources. These were introduced to consumers by peer workers, and the intervention was evaluated using a mixed methods approach. A mixed methods approach enabled the research questions to be addressed from different perspectives, providing a fuller picture than could be gained using a single method [ 10 , 11 ]. A quasi-experimental evaluation of hope sought to provide relatively objective evidence of the impact of the intervention; an anonymous survey provided comparable participant ratings of the intervention’s impact in expected areas; and qualitative interviews enabled inductive identification of experiences of most importance to participants. Ethical approval was obtained from the LHD’s Human Research Ethics Committee. Reporting adheres to guidelines for Good Reporting of A Mixed Methods Study (GRAMMS) in health service research [ 12 , 13 ].

We reviewed the literature to identify lived experience research papers in which the findings were directly relevant to the daily lives of people living with mental health issues. We consulted with peer workers and others with lived experience to identify topics most likely to be of interest to users. Through these processes, we identified six research studies to develop into user-friendly resources. Translating these began with a conference workshop [ 14 ] and a full day design lab focused on design thinking [ 15 ]. These were attended by service users, peer workers, researchers, clinicians and final year design students from the University of Technology Sydney. After the design lab, the ideas and prototypes were taken up by the design students for further development. They designed and produced the resources with regular input on content and format from the research team and peer workers. The resources are summarised in Table  1 . Detailed descriptions and photographs are provided in the supplementary materials.

Intervention

During peer worker training, each of the finalised resources was examined by peer workers and the research team, who together reached consensus on how each resource would be introduced to consumers. This was flexible however, enabling peer workers to adapt their explanations and activities to be most appropriate to the needs of individual participants. The agreed upon protocols were developed into a peer worker manual.

In recognition that different content is relevant to different people, participants were asked to select four of the six resources. Peer workers introduced participants to one resource per week for 4 weeks. For most resources, the peer workers showed each participant the resource, went through some of it in detail, explained how it was designed to be used, then gave it to the participant to keep and use in whatever way they preferred.

Sampling and recruitment

The project was carried out in one Local Health District (LHD) in Sydney, Australia. The LHD employs 18 peer workers over three inpatient and four community sites. The project employed five of these peer workers to recruit and provide the intervention to clients of these services. Contacts between peer workers and participants took place wherever peer workers normally met with their clients, for example on an inpatient unit, at a community mental health service, or in a community venue such as a coffee shop.

Eligible participants were: clients of the LHD; able to speak and read English; and able to provide informed consent. Clients were excluded if they were considered by their peer worker or primary clinician to be unable to fully understand the procedures, risks and benefits of participation due to acute illness. We planned to recruit 30–40 participants as previous research indicated that this sample size was sufficient to show change [ 21 ].

Recruitment

Peer workers explained the study to all eligible clients that they saw in the course of their work. If a client was interested, the peer worker gave them written project materials (flyer, participant information sheet and consent form), offered to read through the forms with them, and answered any questions. Clients were given several days to read and think about the project and were invited to call the Chief Investigator to discuss the project further if they wished. In several days, the peer worker recontacted the client and, if they wished to participate, obtained written informed consent. Peer workers emphasised that the research was voluntary, participants could withdraw at any time, and participation or refusal would have no impact on their other interactions with peer workers or health service. Consent was considered not as a one-off event, but an ongoing negotiation between peer workers and participants [ 22 ], where the primary concern was participants’ well-being. Therefore, at each research-related interaction, peer workers obtained verbal confirmation that the client was happy to continue taking part. Participants were given a $50 gift voucher after study completion to thank them for their time.

Allocation to groups

After providing informed consent, participants were allocated to group A or group B to determine when they would receive the intervention. In most cases this was done using a coin toss, however, the staggered timing of recruitment and other peer worker commitments made it necessary for 13 participants to be allocated based on logistical issues. This also meant that the groups were uneven, with 25 participants allocated to group A and 13 participants allocated to group B.

Data collection

Hopefulness was measured using the Herth Hope Index (HHI). The HHI is a 12-item scale that was developed for clinical populations, takes just a few minutes to do, has good psychometric properties [ 23 ] and has been used with a variety of different clinical groups in at least seven languages e.g., [ 24 ]. It includes three factors of: temporality and future ; positive readiness and expectancy ; and interconnectedness . Participants completed the HHI at three timepoints. Group A received the intervention between T1 and T2; group B received the intervention between T2 and T3.

Participants were asked to complete an anonymous online evaluation survey once only, after they had received their four resources (at T2 for group A and T3 for group B). This consisted of a series of fixed-choice questions about each resource including its impact on various aspects of participants’ lives and their overall experience of the project.

Semi-structured interviews [ 25 ] were conducted after participants had received the resources and completed T2 (group A) or T3 (group B). They were conducted by Author 8, who had not been involved in the intervention. An interview guide was used containing open ended questions. The interview guide was used flexibly, allowing for conversational flow and follow-up questions to gather detail about issues that were of importance to participants [ 25 ]. Participants were asked for feedback on the individual resources and about the impact of the resources on them. Questions included: ‘Do you think you got any benefits out of being a participant in this study?’ ‘Was there anything that you didn’t like about being in the study?’ and ‘Did anything change for you as a result of engaging with the resources?’

Interviews were conducted in person in a private room in the health service or, where the participant preferred, over the phone. Interviews lasted between 7 and 30 min, averaging 17 min. Interviews were audio recorded and transcribed verbatim for detailed analysis. Participants were provided with both a copy of their transcript and a summary of findings and invited to comment, however, no participants provided additional feedback.

Data analysis

Herth hope index.

Total scores were calculated for each factor ( temporality and future ; positive readiness and expectancy ; and interconnectedness ) and the overall total score. To examine change over time, paired t -tests were completed between Time 1 and Time 2; Time 2 and Time 3 and Time 1 and Time 3 for all participants as well as for Group A and Group B participants separately. Statistical analysis was conducted using SPSS.

Anonymous survey

Frequencies were calculated and presented in visual format to understand the range of responses.

Qualitative interviews

Data from participant interviews were analysed using interpretative content analysis (ICA). This hybrid method combines qualitative and quantitative techniques [ 26 , 27 ], enabling inductive identification of themes as well and reporting of the frequency of those themes [ 26 , 28 ].

The first step in ICA is inductive coding. Constant comparative analysis (CCA) was employed, as it is a systematic, rigorous, and well-established coding technique which minimises the risk of omission of data (Charmaz, 2014). Segments of data, such as phrases or sentences were examined and allocated one or more code names to reflect the underlying concepts they represented. Each new segment of data was compared to others to identify underlying similarities. For example, the data segments ‘just because you are unwell at times doesn’t mean staying unwell all the time’ and ‘Hope changed for me, it gave me a different angle of hope’ were found to represent the same concept: gaining hope. New data were also compared to existing codes and either added to these, or new codes were developed. Codes were compared to each other and refined by merging similar codes or grouping codes into higher level categories. NVivo computer software [ 29 ] was used to manage the data. Authors 1 and 4 independently coded the first three interviews, then met to discuss coding decisions and reach consensus. Thereafter, the authors met regularly to discuss and review coding decisions. These discussions were aimed at enhancing interpretive rigour, ensuring participants’ viewpoints were faithfully represented. When all interviews had been coded, and the coding list finalised, the transcripts were re-examined to ensure comprehensive coding [ 26 ]. NVivo was then used to identify the number of participants who discussed each theme.

Integration

When data from each component of the study had been analysed, the findings were compared to each other. Authors responsible for analysing different sections (primarily authors 1, 4 and 9) presented findings to the other authors and, through close discussion, questioning, and returning repeatedly to the data, derived an integrated interpretation of the results.

Participants

Sixty-four people were invited to be part of the study and 43 agreed to participate. Five participants (2 from group A and 3 from group B) withdrew from the study after the first assessment and did not receive any of the resources. No participants withdrew between receiving the first resource and the post intervention assessment. Participants were not required to provide explanation for not participating or withdrawing but reasons mentioned included: “limited time/too busy”; “not interested”; “couldn’t be bothered”; “school commitments”; “mental health is okay”; and “anxious”. Thirty-four completed all three assessments, while four participants completed only the pre and post intervention assessments. Thirty participants completed the anonymous survey and 33 participated in the qualitative interviews. Table  2 presents the characteristics of people who participated in the study ( n  = 38).

Characteristics of participants

a 13 participants reported 2 or 3 diagnoses

While our intention was to recruit participants from inpatient and community settings, 36 of the 38 participants were living in the community. This was due to logistical and staff issues rather than potential inpatient participants declining.

The findings are presented below for each of the two research questions. During analysis, the impact of the research context emerged as a factor to be considered in the interpretation of the other findings. Therefore, findings around this issue are also presented.

Does exposure to lived experience research increase hopefulness?

Data about the impact on hopefulness of engaging with the resources comes from all three data sources: the HHI, anonymous survey, and qualitative interviews.

Participant responses to the HHI are summarised in Fig. ​ Fig.1. There 1 . There were no significant differences between Time 1 and Time 2 for Group A. However, significant improvements were seen in temporality and future (t = 3.4; p  = 0.003), interconnectedness (t = 2.7; p  = 0.013) and HHI Total Scores (t = 3.1; p  = 0.006) from Time 2 to Time 3 and in temporality and future (t = 2.3; p  = 0.030) and HHI total (t = 2.6; p  = 0.019) from Time 1 to Time 3. There were no significant differences between time points for Group B. For the combined data set, significant improvements were seen in temporality and future (t = 3.1; p  = 0.004), interconnectedness (t = 2.5; p  = 0.018) and HHI Total Scores (t = 3.1; p =  0.004) from Time 2 to Time 3 and in temporality and future (t = 2.8; p  = 0.008), interconnectedness (t = 2.2; p  = 0.035) and HHI total (t = 2.4; p  = 0.023) from Time 1 to Time 3 (Fig. ​ (Fig.1 1 ).

Change in Herth Hope Index over time: all participants and by group allocation

In the anonymous survey, between 80 and 91% of participants who chose each resource reported that it had caused some improvement in their beliefs about their future or recovery, indicating an increase in hope. Responses for each resource are shown in Fig.  2 .

Has accessing the resource made a difference in your life in terms of your beliefs about your future or recovery?

In the qualitative interviews, more than half of the participants (17/33) described how interacting with the resources made them feel more hopeful, positive and empowered. For example, P13 stated, regarding the meaningful activities magazine, that “I just had a little bit of a light bulb moment saying, ‘Well, these things help these people feel better and all these ideas’, so it gave me a bit of understanding and hope for my future.” Similarly, P12, commenting generally about the resources, said that “Seeing other people’s experiences, and that’s really helped to know ‘I can do that too’.” It should be noted that participants were not asked about hope specifically; the theme of hope emerged in response to general questions about the impact of the resources.

How else did interacting with lived experience research resources influence participants’ lives?

It can be seen from Fig.  3 that an overwhelming majority of participants in the anonymous survey found each of the resources helpful, with between 46 and 75% of people finding each resource ‘very helpful’ or ‘extremely helpful’. Further, between 85 and 100% of people, depending on the resource, said that they would recommend it to other people.

Participant perceptions of resources

Participants also indicated that they perceived a positive impact of the resources on the specific aspects of their lives that were measured. For each resource, 60 to 80% of participants reported it had made a small improvement or a big improvement in their lives. Results are summarised in Fig.  4 .

Has accessing the resource made a difference in your life in terms of

The in-depth interviews allowed participants to state their perspectives on the impact of the resources that mattered to them. Overall, 30/33 participants stated, when asked specifically, that they had benefited from being part of the study. Of the remaining three, two answers were unclear and one was not sure if they had benefited. This participant, P31, also reported that nothing had changed for them as a result of the study. With the exception of P31, all other participants described some positive impact from interacting with the resources in subsequent discussion.

The positive impacts people described fell into a number of broad categories, described and exemplified in Table  3 . Counts are the total number of people who mentioned experiencing this impact. As noted above, these impacts emerged as responses to open questions, so a participant not mentioning an impact does not guarantee that they did not experience it.

Self-perceived positive impact of resources

Negative impacts

While most of the impacts participants described were, as seen above, very positive, a few participants reported negative impacts. In the anonymous survey, three people reported that accessing a specific resource had a negative impact in one or two of the specified areas, as seen in Fig. ​ Fig.4. 4 . To contextualise these responses, they were considered alongside each participant’s responses to other questions and are reported in Table  4 .

Participants reporting negative impacts in the anonymous survey

The qualitative interviews also revealed some negative impacts of the resources and provided more detailed information. Three participants reported experiencing some distress from interacting with the resources. It is not possible to tell whether these are the same participants who reported the negative impacts in the anonymous survey. Two participants, while reporting a positive overall experience with the project, said that they had found the content of specific resources distressing because of their past experiences and life circumstances.

P26: Just some of the recommendations [from the hope box] felt like a stab in the gut. Something that I couldn't do in my own life … the one about spending time with friends because I felt that I'd lost friends during my hospital stay .

P19: Personal medicine was, I didn't want to use at all. I just didn't anticipate it. I just, I actually had an upset because I'm an astrologer. I have my own personal way of looking at life … I don't want to have more psychology stuff .

P13: Some of what the participants were experiencing, I experienced those symptoms and I thought it is upsetting. But with what they've set their hope in things to do, it also made me think, well, then I can still feel hopeful about the future .

Impact of the research context

Participants in the qualitative interviews reported that they enjoyed being part of the research project. Findings from the anonymous survey supported this; in response to the question “Overall, how would you describe your experience of participating in the study?”, 18 participants (60%) reported a very positive experience, 10 (33%) gave a ‘quite positive’ response, and two (7%) were neutral. No participants reported a negative experience.

These positive experiences may not, however, have been about the resources alone. Ten people specifically mentioned that they had found being part of the research process a valuable and affirming experience. They appreciated being asked for their opinions about the resources and valued being able to contribute to a piece of research that they saw as worthwhile. Some reported being pleased to know that people with lived experience were doing research and found this hope inspiring.

P25: I really valued being able to, like, participate and do something worthwhile .

P15: I felt stronger because of it, like there's people that care and people that are making an effort to try and help and improve the lives of others .

P26: I think it's helped a lot with my recovery. Engaging with the materials and trying to make them the best that they can be .

The responses of fourteen additional participants to a question about what had motivated them to be in the study, also suggested positive feelings about the research process. Six of these reported that they had agreed to participate in the project because of a desire to make a positive contribution to their community and to the mental health system, saying things like “I felt that maybe I can make a difference for other people like me” (P28). A further six were attracted to it as a piece of research. P29, for example “was interested in the type of research”, while for P27 it was “because I believe in research”. Two more participants wanted their voice to be heard, saying, for example: “I thought it would be good to sort of have my own opinion put out there” (P20).

Four participants spontaneously expressed the hope that the project would continue into the future.

P14: I just hope something, you guys are able to elaborate on, give more of it, the research, to people. I think it's really good, because it could save someone's life. So, I just think, just keep going with it .

This study is the first to examine the potential impacts of accessing lived experience research for people living with mental health issues. Overall, the findings suggest that lived experience research, presented in accessible formats, can result in positive experiences and outcomes.

Initially, the results obtained from the HHI appeared counter-intuitive. The original hypothesis was that participants would demonstrate improved hope between times 1 and 2, for group A and between times 2 and 3 for group B (i.e., that hope scores would increase immediately after engaging with the resource). This was not the case. Yet results from both the anonymous survey and the qualitative interviews indicated that many participants did find engaging with the resources to be hope inspiring. The significantly increased HHI scores between post-intervention and follow-up for group A could suggest that more time is required before the impact of the resources is seen in relation to hopefulness, possibly to integrate learnings from the resources into everyday life. Perhaps if group B had completed the HHI a month following engaging with the resources (i.e., 1 month after Time 3), then significant changes may have been observed. The idea that changes in hope may not be immediate is supported by findings from a recent systematic review of self-management interventions for people living with severe mental illness [ 30 ]. This review found no significant difference in change in hope scores between treatment and control groups at the end of treatment (2 studies, n  = 389, p  = 0.07) but a significant difference favouring the intervention group at follow-up (3 studies, n  = 967, p  = 0.03).

It is also possible that the hope scores for Time 1 were artificially inflated through the process of recruitment and consent relating to the research project. Previous research has found that two experiences that contribute to hope are: feeling respected, listened to and believed; and contributing or helping others [ 9 ]. Our qualitative data suggests that people may have derived hope from finding out about lived experience research and being asked to take part in the research project. People felt that their views and experiences were being valued and could see that by participating in the project they were contributing to something that may help others in the future. It may well be that levels of hope, if measured before the project was explained to participants (a hypothetical possibility only) may have been lower, suggesting that the change between Time 1 and Time 2 that relates to the resources may be underestimated. Given that hope is an overall feeling about life, which is influenced by many factors, the finding that hopefulness increased overall within the short timeframe of our small study suggests a potential benefit of lived experience research that should be further investigated.

While participants’ reports of the impact of the lived experience resources on their lives were very positive, there were a couple of instances where a participant reported a negative impact. This was despite the involvement of peer workers and other people with lived experience in resource development and our efforts to present positive and empowering perspectives. In each case, the negative experience did appear to be within the context of a wider positive experience with the resources. However, given that every individual’s situation and history is unique, it may be impossible to ensure that a resource will never cause distress. Further, short term discomfort may sometimes be ultimately productive. Shifts in perspectives and understandings can often involve tension and conflict as people grapple with new ways of thinking and what these might mean for their previously held stories e.g., [ 31 ]. The findings suggest the importance of involving, in dissemination of such resources, peer workers or others who have a relationship with the person and are experienced in dealing with these kinds of issues, and potential distress. For people who are vulnerable, it may be advisable for peer workers to go through the resource with them, rather than presenting it as a stand-alone resource, while for others it may be advisable to check in with people about their reactions. This issue and the role of peer workers is discussed in detail elsewhere [Authors, in preparation].

When searching for research to use for this study, it was more difficult than anticipated to find appropriate studies. This was for two main reasons. First, there are no standard keywords to identify lived experience research and authors do not always declare their lived experience status. Anecdotal evidence indicates that the latter may be a reflection of stigma and potential discrimination in publishing. Second, we found that only a small minority of lived experience research suggested implications that could be used directly in people’s daily lives. Rather, most was aimed at increasing the understanding or changing the behaviour of health professionals and policy makers [ 32 ]. This type of research is clearly important. However, the current study highlights the potential usefulness of lived experience research focused on facilitating positive knowledge, attitudes and strategies for services users. It suggests the need for funding bodies and publishers to support lived experience research that will produce findings that can be used directly in people’s daily lives. The current study contributes to knowledge translation by highlighting a strategy that addresses the problem of accessing the evidence base and rendering that evidence base user friendly [ 33 ].

This study has several limitations. As with any study relying on volunteers, it is possible that participants were, at the outset, more positively inclined toward lived experience research than those who declined to participate. Peer workers may also have inadvertently differentially approached people they thought would enjoy or benefit from the resources. The sample size was quite small so, for the analysis of change in hope, it is possible that some real differences may not have been identified. A further limitation of the study is that 36 of the 38 participants were living in the community. While peer workers believed that many of the resources would be useful in inpatient settings, logistical and staff issues meant that recruitment was primarily from the community. Future research is needed to confirm the findings of this study with a wider sample, including people in a variety of mental health settings.

It should be acknowledged that this study did not compare resources developed from lived experience research to similar resources developed from other research that was designed to illuminate lived experience perspectives but was not conducted by researchers with their own lived experience. Therefore, while a number of participants expressed positive feelings about the research being done by people with lived experience, it is still unclear to what extent the lived experience authorship was critical to participants’ engagement with the resources.

It is also important to recognise that participants engaged with the resources, not simply as part of their everyday interactions with their peer workers, but in the context of a research project. Participants’ positive experiences with being part of the research project may have affected their overall reactions to the resources. It was impossible to disentangle participants’ experiences of the resources themselves from their experiences of being a participant whose opinions and experiences were being sought for a research study which ultimately aimed to help improve the lives of other people who experience mental health issues. The authors are currently designing a project to investigate the use of the resources in peer workers’ routine practice. By offering resources and training to a large sample of peer workers, then allowing them to use the resources where they feel it is appropriate, we will get a clearer sense of the usefulness of these resources in everyday practice.

Many benefits have been acknowledged in recent years of mental health research being conducted by or in collaborations including researchers with lived experience, for both the researchers and the research itself e.g., [ 1 , 6 ]. The current research indicates that lived experience research, when brought to their attention and presented in user-friendly formats, also has the potential to provide direct benefits to people living with mental health issues. By advocating for lived experience research and sharing the findings in accessible ways, researchers, peer workers and others can support people living with mental health issues to develop new knowledge that they can use for their self-empowerment, recovery and wellbeing.

Supplementary information

Acknowledgments.

We acknowledge the University of Technology Sydney students who provided their design skills for the resource development: Angus Armstrong, Emily Choi, Imogen Karp, Max Mamo, Bailey Tinta and Lilliah Woodham. We are indebted to our amazing research assistants, the peer workers from SESLHD who helped develop the resources and delivered the intervention: Alise Blayney, Nathan Clissold, Candice Fuller, Darren Wagner and Cheryl Wittingslow. Thanks also to the other peer workers and people with lived experience who provided helpful input and feedback about the project and resources as they developed. Finally, we sincerely thank our research participants, who gave up their time to be part of the study and provided us with their insightful feedback.

Abbreviations

Authors’ contributions

Study conception: AH,KB,KG,HG,BT; Study design: AH,KB,FC,KG,HG,BT,JNS; Site access, ethics and governance management and research assistant support: FC,LD; Research assistant supervision and research management: MH, AH; Data collection: MH + research assistants; Data analysis and interpretation: AH, TD, MH, JNS. Manuscript preparation: AH; critical revision: KB, FC, KG, HG, MH, JNS, BT. All authors read and approved the final manuscript.

This research was funded by One Door Mental Health, through their Research Trust Fund. The funder was not involved with study design, data collection, analysis, interpretation, or publication.

Availability of data and materials

Ethics approval and consent to participate.

Ethical approval was obtained from the South Eastern Sydney Local Health District Human Research Ethics Committee (Approval #18/144). Participants provided written informed consent to participate.

Consent for publication

Competing interests.

The authors declare they have no competing interests.

Publisher’s Note

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

Supplementary information accompanies this paper at 10.1186/s12888-020-02861-0.

An official website of the United States government

The .gov means it’s official. Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

The site is secure. The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

• Publications
• Account settings
• My Bibliography
• Collections
• Citation manager

Save citation to file

Email citation, add to collections.

• Create a new collection
• Add to an existing collection

Add to My Bibliography

Your saved search, create a file for external citation management software, your rss feed.

• Search in PubMed
• Search in NLM Catalog
• Add to Search

Connecting communities to primary care: a qualitative study on the roles, motivations and lived experiences of community health workers in the Philippines

Affiliations.

• 1 College of Medicine, University of the Philippines - Manila, Metro Manila, Philippines.
• 2 Department of Anthropology, University of the Philippines - Diliman, Quezon City, Philippines.
• 3 Faculty of Public Health & Policy, London School of Hygiene & Tropical Medicine, 15-17 Tavistock Place, London, WC1H 9SH, UK.
• 4 Faculty of Public Health & Policy, London School of Hygiene & Tropical Medicine, 15-17 Tavistock Place, London, WC1H 9SH, UK. [email protected].
• PMID: 32917203
• PMCID: PMC7488850
• DOI: 10.1186/s12913-020-05699-0

Background: Community health workers (CHWs) are an important cadre of the primary health care (PHC) workforce in many low- and middle-income countries (LMICs). The Philippines was an early adopter of the CHW model for the delivery of PHC, launching the Barangay (village) Health Worker (BHW) programme in the early 1980s, yet little is known about the factors that motivate and sustain BHWs' largely voluntary involvement. This study aims to address this gap by examining the lived experiences and roles of BHWs in urban and rural sites in the Philippines.

Methods: This cross-sectional qualitative study draws on 23 semi-structured interviews held with BHWs from barangays in Valenzuela City (urban) and Quezon province (rural). A mixed inductive/ deductive approach was taken to generate themes, which were interpreted according to a theoretical framework of community mobilisation to understand how characteristics of the social context in which the BHW programme operates act as facilitators or barriers for community members to volunteer as BHWs.

Results: Interviewees identified a range of motivating factors to seek and sustain their BHW roles, including a variety of financial and non-financial incentives, gaining technical knowledge and skill, improving the health and wellbeing of community members, and increasing one's social position. Furthermore, ensuring BHWs have adequate support and resources (e.g. allowances, medicine stocks) to execute their duties, and can contribute to decisions on their role in delivering community health services could increase both community participation and the overall impact of the BHW programme.

Conclusions: These findings underscore the importance of the symbolic, material and relational factors that influence community members to participate in CHW programmes. The lessons drawn could help to improve the impact and sustainability of similar programmes in other parts of the Philippines and that are currently being developed or strengthened in other LMICs.

Keywords: Community health workers; Health systems; Human resources for health; Philippines; Primary health care.

PubMed Disclaimer

Conflict of interest statement

The authors declare that they have no competing interests.

Timeline on the development of…

Timeline on the development of the Barangay Health Worker role in the Philippines…

Similar articles

• The Experiences of Community Health Workers in Preventing Noncommunicable Diseases in an Urban Area, the Philippines: A Qualitative Study. Yamaguchi Y, Palileo-Villanueva LM, Tubon LS, Mallari E, Matsuo H. Yamaguchi Y, et al. Healthcare (Basel). 2023 Aug 30;11(17):2424. doi: 10.3390/healthcare11172424. Healthcare (Basel). 2023. PMID: 37685457 Free PMC article.
• Salaried and voluntary community health workers: exploring how incentives and expectation gaps influence motivation. Ormel H, Kok M, Kane S, Ahmed R, Chikaphupha K, Rashid SF, Gemechu D, Otiso L, Sidat M, Theobald S, Taegtmeyer M, de Koning K. Ormel H, et al. Hum Resour Health. 2019 Jul 19;17(1):59. doi: 10.1186/s12960-019-0387-z. Hum Resour Health. 2019. PMID: 31324192 Free PMC article.
• The effect of payment and incentives on motivation and focus of community health workers: five case studies from low- and middle-income countries. Singh D, Negin J, Otim M, Orach CG, Cumming R. Singh D, et al. Hum Resour Health. 2015 Jul 14;13:58. doi: 10.1186/s12960-015-0051-1. Hum Resour Health. 2015. PMID: 26169179 Free PMC article. Review.
• Engaging community health workers in maternal and newborn care in eastern Uganda. Okuga M, Kemigisa M, Namutamba S, Namazzi G, Waiswa P. Okuga M, et al. Glob Health Action. 2015 Mar 31;8:23968. doi: 10.3402/gha.v8.23968. eCollection 2015. Glob Health Action. 2015. PMID: 25843491 Free PMC article.
• Sources of community health worker motivation: a qualitative study in Morogoro Region, Tanzania. Greenspan JA, McMahon SA, Chebet JJ, Mpunga M, Urassa DP, Winch PJ. Greenspan JA, et al. Hum Resour Health. 2013 Oct 10;11:52. doi: 10.1186/1478-4491-11-52. Hum Resour Health. 2013. PMID: 24112292 Free PMC article. Review.
• Feasibility, acceptability and impact of a clinical decision support tool among primary care providers in an urban, rural and remote site in the Philippines. Calderon Y, Sandigan G, Tan-Lim CSC, De Mesa RYH, Fabian NMC, Rey MP, Sanchez JT, Dans LF, Galingana CLT, Bernal-Sundiang N, Casile RU, Aquino MRN, Poblete KE, Lopez JFE, Zabala H, Dans AL. Calderon Y, et al. BMJ Open Qual. 2024 Feb 29;13(1):e002526. doi: 10.1136/bmjoq-2023-002526. BMJ Open Qual. 2024. PMID: 38423587 Free PMC article.
• Female community health volunteers' experience in navigating social context while providing basic diabetes services in western Nepal: Social capital and beyond from systems thinking. Dahal U, Tamang RL, Dræbel TA, Neupane D, Koirala Adhikari S, Soti PB, Gyawali B. Dahal U, et al. PLOS Glob Public Health. 2023 Nov 22;3(11):e0002632. doi: 10.1371/journal.pgph.0002632. eCollection 2023. PLOS Glob Public Health. 2023. PMID: 37992049 Free PMC article.
• Using the Socioecological Model to Explore Barriers to Health Care Provision in Underserved Communities in the Philippines: Qualitative Study. Reyes AT, Serafica R, Kawi J, Fudolig M, Sy F, Leyva EWA, Evangelista LS. Reyes AT, et al. Asian Pac Isl Nurs J. 2023 Aug 22;7:e45669. doi: 10.2196/45669. Asian Pac Isl Nurs J. 2023. PMID: 37606966 Free PMC article.
• 'Voice needs teeth to have bite'! Expanding community-led multisectoral action-learning to address alcohol and drug abuse in rural South Africa. D'Ambruoso L, Mabetha D, Twine R, van der Merwe M, Hove J, Goosen G, Sigudla J, Witter S; Verbal Autopsy with Participatory Action Research (VAPAR)/Wits/Mpumalanga Department of Health Learning Platform. D'Ambruoso L, et al. PLOS Glob Public Health. 2022 Oct 19;2(10):e0000323. doi: 10.1371/journal.pgph.0000323. eCollection 2022. PLOS Glob Public Health. 2022. PMID: 36962488 Free PMC article.
• World health organization and UNICEF: primary health care: report of the international conference on primary health care, 6-12 September 1978. Alma-Ata, USSR; 1978.
• Scott K, Beckham SW, Gross M, Pariyo G, Rao KD, Cometto G, Perry HB. What do we know about community-based health worker programs? A systematic review of existing reviews on community health workers. Hum Resour Health. 2018;16(1):39. doi: 10.1186/s12960-018-0304-x. - DOI - PMC - PubMed
• Pinto RM, da Silva SB, Soriano R. Community health Workers in Brazil’s unified health system: a framework of their praxis and contributions to patient health behaviors. Soc Sci Med. 2012;74(6):940–947. doi: 10.1016/j.socscimed.2011.12.025. - DOI - PMC - PubMed
• Olaniran A, Smith H, Unkels R, Bar-Zeev S, van den Broek N. Who is a community health worker? - a systematic review of definitions. Glob Health Action. 2017;10(1):1272223. doi: 10.1080/16549716.2017.1272223. - DOI - PMC - PubMed
• Phillips DR. Primary health care in the Philippines: banking on the barangays? Soc Sci Med (1982) 1986;23(10):1105–1117. doi: 10.1016/0277-9536(86)90269-8. - DOI - PubMed
• Search in MeSH

Related information

Grants and funding.

• MC_PC_16026/MRC_/Medical Research Council/United Kingdom
• 200346/Z/15/Z/Wellcome Trust/Newton Fund-MRC Humanities & Social Science Collaborative Award (GB)

LinkOut - more resources

Full text sources.

• BioMed Central
• Europe PubMed Central
• PubMed Central

Miscellaneous

• NCI CPTAC Assay Portal

• Citation Manager

NCBI Literature Resources

MeSH PMC Bookshelf Disclaimer

The PubMed wordmark and PubMed logo are registered trademarks of the U.S. Department of Health and Human Services (HHS). Unauthorized use of these marks is strictly prohibited.

Sharing experiences to shape research

• Skip to Navigation
• Our services
• Get involved
• For professionals
• Our charity
• Help in a crisis

• Meet the CLASS Clinic team
• I think I may be autistic
• I have been referred for an autism assessment
• I have been diagnosed as autistic
• Support for mental health
• I am a carer or family member of someone autistic
• Additional support
• Community Paediatrics
• Cambridge Psychosis Centre
• Information for children and young people
• Information for families / carers
• Information for professionals
• Our partners
• Adults and specialist mental health
• Adults and older people's community services
• Inpatient wards
• Children and young people
• Hanging baskets
• Information for patients, parents and carers
• Our treatment pathway
• Phoenix School
• Meet the team
• Referrals to Phoenix
• Occupational therapy toolkit
• Occupational therapy referrals
• About Speech and Language Services
• Speech and Language Therapy Toolkit
• Late Talkers: How to help your child
• Training and Webinars
• Primary Care Mental Health Service: Information for carers
• Peer Support Workers in PCMHS
• Referrals to the Primary Care Mental Health Service
• Evaluation report on Primary Care Mental Health Service
• About our service
• Early Years Development
• Supporting your child's development
• Postural Care and Management
• Specialist Clinics
• Psychological Skills Service
• Psychology Toolkit
• Template landing page
• Make a referral
• CCPNR Covid-19 update
• Visiting CCPNR
• For Young People
• Parents/Carers
• Darwin vacancies
• Norfolk Community Eating Disorder Service
• What are Eating Disorders?
• Information for inpatients
• Assessment Clinics (S3)
• Referrals (S3)
• Three-day multi-family work
• Legal issues: The legal framework
• The treatment programme on S3
• Information for carers
• The Ward Environment
• Keeping Safe Programme
• Care and treatment
• Our stories
• Information for parents and parents-to-be
• Perinatal Professional Referrals
• Self-Refer Here
• Treatments We Offer
• Older Adults (+65)
• Employment Support
• For Professionals
• Self Help Videos
• COVID-19 updates
• Patient Information Leaflets
• Professionals
• News and events
• RCE - Wellbeing Hub
• Minor Injury Units
• Testimonials
• Adult Carers
• Parent Carers
• Young carers
• Carers' Handbook: Introduction
• Getting the support you need to continue caring
• Getting regular support
• Legislation
• Benefits and respite
• Understanding the diagnosis
• Medication and physical health
• Understanding suicidal thoughts and suicide prevention
• Your wellbeing
• Further resources
• Understanding self harm
• Zero Suicide
• Urgent and emergency support
• Latest vacancies
• Temporary staffing
• Apprenticeships
• Accommodation
• Meet Our Staff
• Featured Recruitment
• Children's, Young People's and Families Services
• Older People Adult and Community
• Adults Specialist Mental Health
• Adult in-patient wards
• Cambridge Adult Locality Team
• Healthcare Support Workers
• Return to Practice
• Heart and Soul
• Become a member
• Peer Support Workers
• Patient, Service User and Carer Experience and Involvement Strategy 2024
• Involvement Opportunities
• Participation and Partnership Forum
• Cambridgeshire and Peterborough Adopting Innovation Hub
• PCREF latest news and updates
• Patient-reported outcome measures (PROMS)
• Team Nomination
• Employee Nomination
• Head Office Contact
• Provide feedback/share your views
• Feedback form
• Patient Advice and Liaison Service (PALS)
• Medical records
• Press and media
• Executive Director portfolios
• Council of Governors
• Post-Covid Syndrome resources
• Service leaflets
• Insight into series
• Long-term conditions leaflets
• Duty of Candour
• Shared decision-making
• Taking care of your information
• Smoke-free and fire safety
• Cambridge Children's Hospital
• Publications
• Privacy and Dignity
• Treasury Disclosure of Information
• Freedom of Information
• National Data Opt Out
• Mental Health Act
• Armed Forces Covenant
• Privacy Notice
• Cookie policy
• Accessibility policy
• Covid information
• Electronic Prescribing & Medicines Administration (EPMA)
• Patient Safety Incident Response Framework
• Sexual safety
• Safer staffing
• Documents that guide practice
• Safeguarding Declarations
• Equality, Diversity and Inclusion
• Infection control
• Zero suicide
• Research news
• Research@CPFT newsletter
• Research publications
• Be part of our research
• Shape our research
• Our research stories
• Learn about research
• Early research considerations
• Research approval process
• Research passport
• Research training
• United States funded research
• Research Database
• Windsor Research Unit
• Clinical innovation
• GPs, primary care & health professionals
• Local Authority
• Medicines and pharmacy
• CPFT Academy
• Staff Mental Health Service
• Staff Support Hub
• HAY Cambridgeshire and Peterborough
• East of England, NHS Specialist Mental Health, Learning Disability and Autism Provider Collaborative
• About Head to Toe
• Where your money goes
• Children, young people and families
• Play the lottery
• Leaving a Gift in Your Will
• Corporate partners
• Trusts and Foundations
• Useful support for staff and patients
• Pennies from Heaven

Search the CPFT NHS Trust website

By a cpft peer support worker.

Research in mental health is important, especially studies involving people with lived experience. Researchers can choose to work with someone who lives with mental health challenges as they bring a wealth of resources when reflecting on their own recovery journey. An Expert by Experience can often easily and quickly recognise the barriers and opportunities of a research project. I think that lived experience can be a part of continuous improvement, with consent. I regularly teach Conversations with Experts by Experience (CEbE) with CPFT sharing my lived experience with researchers studying mental health conditions. The teaching programme is led by people with lived experience and CPFT consultant psychiatrist  Hisham Ziauddeen  (@HZiauddeen). We aim to help researchers improve their understanding of the experience, reality and variability of mental health experiences. Researchers get to hear different perspectives on experiencing mental health issues, the various challenges we face, and how experiences can be similar, or different as we are all unique. Working with researchers who have their own lived experiences is really inspiring because they have been through a recovery journey and use their expertise and insight to help shape their own research questions. Talking with researchers about their projects in detail has helped me learn more about myself. Recently I was involved in a study exploring whether a self-help sleep improvement program can reduce insomnia and improve social recovery in early psychosis.  As a member of the Lived Experience Advisory Group I helped the researcher,  Camice Revier , consider how potential participants might engage better, to benefit from this research study and develop appropriate information material. I felt that my involvement provided real world feedback on the research process and whether the methods are acceptable, constructive and include appropriate communication. This experience also improved my knowledge of sleep techniques, which has helped me to manage sleep issues better. I wanted to share my experiences of mental health challenges during my recovery journey because I like to turn a perceived weakness into a strength, using my voice to improve care and treatment through research, being part of something bigger and helping others.

If you would like to be involved in research at CPFT and share your experience, watch this short film  and get in touch with R&D user and carer manager,  Iliana Rokkou . 

As a patient, relative or carer using our services, sometimes you may need to turn to someone for help, advice, and support. 

Patient Advice and Liaison service    Contact the Trust

We use cookies on this website to help improve our service. Cookies let us anonymously see how our site is used. They also allow us to show content which is most relevant to you. if you are OK with this, please press "Accept". For information on how the Trust uses cookies, please see our  Privacy policy .