primary research study on the lived experience of caring

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The Journal of Mental Health Training, Education and Practice

ISSN : 1755-6228

Article publication date: 25 November 2022

Issue publication date: 2 February 2023

Mental health (MH) and caring can be demanding for those directly and indirectly impacted. An under-researched area is that of professionals’ personal experiences of caring for a loved one with MH difficulties. This study aims to provide an in-depth exploration of psychologists’ experiences of caring and its impact on clinical practice.

Design/methodology/approach

A total of 11 psychologists with experiences of caring for a loved one with a diagnosed MH condition and/or MH distress participated in semi-structured interviews focused on caring experiences and its impact. Transcripts were analysed using thematic analysis.

Themes identified were as follows: personal and professional roles; the emergence of a carer identity; carer stress and strain; impact on professional practice; and dual positioning.

Originality/value

This study highlighted the knowledge and value of listening to professionals with lived experiences. Their ability to understand stigmatisation through personal caring experiences may facilitate the mitigation of this for vulnerable people attending clinical services.

• Mental health
• Caring/carers
• Dual positioning
• Psychologist lived experience

Burrows, A. , Warner, C. , Heath, J. and Keville, S. (2023), "Mental health, stigma and psychologists’ lived experience of caring", The Journal of Mental Health Training, Education and Practice , Vol. 18 No. 2, pp. 171-183. https://doi.org/10.1108/JMHTEP-03-2022-0018

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• Published: 19 March 2021

The challenges characterizing the lived experience of caregiving. A qualitative study in the field of spinal cord injury

• Claudia Zanini   ORCID: orcid.org/0000-0002-3863-061X 1 , 2 ,
• Julia Amann   ORCID: orcid.org/0000-0003-2155-5286 1 , 3 ,
• Mirjam Brach 1 , 2 ,
• Armin Gemperli   ORCID: orcid.org/0000-0002-2363-0625 1 , 2 &
• Sara Rubinelli 1 , 2  

Spinal Cord volume  59 ,  pages 493–503 ( 2021 ) Cite this article

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Metrics details

• Quality of life
• Risk factors

Study design

Qualitative exploratory study.

To explore the lived experience of SCI caregivers, with a focus on the challenges of their role.

Caregivers of people with SCI living in the community in Switzerland.

Data were collected through semi-structured interviews. Thematic analysis was performed.

The sample included 22 participants (16 women, 15 life partners) with a mean age of 61 years who had been caregivers for an average of 18 years. Caregiving in SCI seemed to be characterized by two phases. The first phase was relatively short and was central to becoming a caregiver; it was marked by challenges related to adjusting to the role of caregiver (e.g., dealing with shock, feeling unprepared). The second phase is lifelong and is characterized by a number of recurrent challenges related to balancing caregiving and personal life (e.g., having to prioritize caregiving over personal wishes, negotiating tasks and workload). Challenges related to lacking appropriate housing, facing financial uncertainty and dealing with bureaucracy were noted during both phases. Caregivers had to deal with these challenges to stay in step with life changes and newly emerging needs.

Conclusions

Informal caregivers have a major role in supporting people with SCI. But their needs are not static. Any strategy to empower them has to adapt to an evolving role characterized by multiple tasks and challenges. A functional relationship between caregivers and care recipients is based on the recognition of their individualities and the different phases of adaptation, which is also an enriching process.

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Introduction.

A spinal cord injury (SCI) changes a person’s life overnight, requiring them to relearn the most basic tasks. People with a SCI who do not achieve complete independence rely on support to manage their condition and carry out daily activities. This support contributes to their quality of life and ability to participate in society and is often provided by family members [ 1 ]. Moreover, caregivers provide support not only for mobility and household chores, but also for respiratory care, body care, bowel and bladder management, and eating and drinking [ 2 , 3 ]

Research in the field of other chronic conditions, such as cancer, Alzheimer’s disease, and Parkinson’s disease, shows that caregiving often disrupts the life of the caregiver, including their professional, social, and familial relationships [ 1 , 4 , 5 , 6 ]. Furthermore, studies have reported the perceived impact that the role of caregiving has on a caregiver’s life (e.g., caregiver burden) [ 7 , 8 ].

In the context of SCI, recent reviews of the literature have reported caregivers having high levels of burden, depression and anxiety, physical symptoms, and reduced life satisfaction, as well as feelings of isolation and a loss of identity [ 9 , 10 ]. This might be due to the fact that, unlike caregiving in other conditions, caregiving in SCI can last decades, as the life expectancy of people with SCI has increased, and these caregivers often take on the role in early-middle age [ 9 , 11 ].

Caregiving is an evolving experience that is shaped by an interplay of contextual and relational factors. To better support caregivers, it is necessary to identify the challenges they encounter in caring for a loved one and assess the appropriateness of the healthcare system’s response to their needs [ 12 ]. This study will explore the lived experience of SCI caregivers, with a focus on the challenges that they face over time. While research in the field of SCI has emphasized the caregiver burden (e.g., predictors, impact on health) [ 3 , 13 , 14 ], this study looks at the evolution of the role of caregiver as experienced by those in this position.

Study design, sampling, and recruitment

This qualitative exploratory study is part of a larger project about informal caregivers of people with SCI in Switzerland. The project included a quantitative study [ 2 ] and a qualitative study with a subgroup of participants. Overall, the latter aimed to identify targets for the empowerment of informal caregivers in terms of support, information services and self‐management resources. Some of its findings are presented in this manuscript.

To recruit participants, we contacted the people with SCI included in the address lists of the national longitudinal survey (Swiss Spinal Cord Injury Cohort Study) [ 15 , 16 ], cross-referenced with the membership database of the Swiss Paraplegic Association and patient databases of the four SCI-specialized clinics in Switzerland. Those with SCI were asked to give the enclosed survey to their primary family caregiver. The caregivers who completed the survey ( N  = 717) could indicate in the informed consent form their availability to take part in an interview.

All the caregivers who indicated in the survey, their availability to take part in an interview, were considered potential participants. Among them, we recruited a purposive sample of participants for this study. The participants fulfilled the following inclusion criteria: being >18 years of age, speaking an official Swiss language (French, German, or Italian) fluently, providing at least 10 h per week of care to a family member with SCI who has been a wheelchair user for at least 4 years, and perceiving either a high or low burden in relation to caregiving. This information was retrieved from the survey. To capture a wide range of perspectives on SCI caregiving, we also considered factors that might affect the experience of caregiving [ 17 , 18 , 19 , 20 ] such as gender and age (for caregiver and care recipient), linguistic region, relationship between caregiver and care recipient (partner, parent, adult child), financial expenditures due to caregiving, and number of years of caregiving.

The potential participants were contacted via phone or via email, depending on the contact method that they indicated as preferred in the survey. We tried to join 34 caregivers, of which 22 actually participated in the study. We stopped trying to recruit a potential participant after having called three times at different times of the day or after having sent two reminders without answer.

Participation in the study was voluntary, and written consent was obtained from all interviewees. During the first contact, the researcher would quickly present the aim of the study and what the participation consisted of. If the person showed an interest in participating, the study information and a copy of the informed consent were sent home. Later on, the interview was scheduled. The day of the interview, the researcher would remind the most important issues linked to the declaration of informed consent and the interviewee would sign the document.

Data collection

Data were collected through audio-recorded semi-structured interviews. The interview guide was developed by CZ and revised in collaboration with the research team. The questions explored the experiences of caregiving and their evolution over time. Knowing from the literature that caregiving can be a disruptive event and that caregivers often reported negative outcomes, we included questions that covered these aspects. In addition, and in line with other scientific literature, we asked questions to uncover the positive aspects of caregiving, as well as resources and strategies that caregivers put into place. The main questions of the interview guide are presented in Table  1 . The questions would guide the conversation but there was the opportunity to follow-up on issues raised by the participants.

Three pilot interviews were conducted to test the interview guide after which no major changes were made, but the wording was improved. The pilot interviews were therefore included in the analysis.

The first author and a trained research assistant (NL) conducted all interviews in the interviewees’ preferred language (German, French, or Italian) and in a location of their choosing (i.e., home, workplace, bar). The interviewers kept a field diary in which they took notes of initial analysis thoughts, interpretations, and questions as well as of feelings during the interviews and first impressions. The interviewers also discussed issues emerged in the conduction of the interviews (e.g., how to best support a caregiver who is crying, how to deal with the own emotions).

Data analysis

The interviews lasted an average of 70 min (±SD = 33), were transcribed verbatim and analyzed following the principles of thematic analysis [ 21 ]. The analysis included both a deductive and an inductive phase: The first author (CZ) conducted the first deductive coding of six interviews and JA and NL of each three interviews. The three researchers met then to compare the coding and solve disagreement. A similar procedure was followed for the inductive coding. The data of each theme were constantly compared to ensure their homogeneity as well as their distinctiveness from other themes. Thematic saturation was reached.

To ensure trustworthiness, the researchers involved in the analysis documented their personal reflections on the data and had regular informal peer debriefings. They also performed investigator triangulation (e.g., by checking preliminary findings and interpretations against the raw data) to reduce researcher bias. They kept track of their discussions on themes, labeling, etc. to remember how and why decisions were made.

The interviews were analyzed in their original language, and excerpts were translated only for the purpose of scientific publications. The software MAXQDA™ (Release 12.2.0) was used to organize and store the data.

More details are presented in the Supplementary file  1 .

The final sample included 22 participants (16 women) with a mean age of 61 years (±SD = 10.4) who had been caregivers for an average of 18 years (±SD = 13.5). The majority of the participants were the life partners ( n  = 15) of the care recipient. Participants’ characteristics are presented in Table  2 .

The analysis indicated that the experience of SCI caregiving had two phases. The first phase covered the period in which the family member became a caregiver. In most cases, this happened after the patient’s discharge from their first rehabilitation. However, in some cases, caregiving began later (e.g., partners met after SCI onset and became caregivers once they moved in together). The second phase began after a new routine had been arranged.

Many participants claimed the beginning of caregiving was a “natural” consequence of the relationship they had with the care recipient, anchored in social norms (e.g., a wife is expected to take care of her husband) and an expectation of reciprocity (i.e., she/he would have done it for me) (illustrative quotes are presented in Table  3 , Q1). In their views, being a caregiver was a part of their duties as a mother or life partner (Q2) and some explained that helping was part of their nature or personality (Q3). Among the reasons mentioned for having become caregivers, the participants often referred to a desire to protect the family privacy and to avoid dependence on homecare providers (Q4). However, in other cases, it was the concurrence of certain life circumstances (e.g., being unemployed and a nurse by training when the accident happened); expressions like “I slipped into it” stressed the accidental way the caregiving began (Q5). Other reasons for “slipping into caregiving” were not finding any appropriate assisted living facility or the expectation of the injured person to be assisted by the family member (Q6).

Despite the different ways in which the participants described the beginning of caregiving, they seemed to have experienced a number of similar challenges. The first phase was characterized by specific challenges that seemed to mirror how the caregiving started: unexpected and disruptive. Dealing with these challenges allowed the family member to embed the caregiver role into their life. The second phase was marked by recurrent challenges and subsequent adjustments. In the following, we provide an in-depth exploration of the challenges that characterize the lifelong process of becoming and being a caregiver (Fig.  1 ).

Overview of the findings.

Challenges related to adjusting to the role as caregiver

Dealing with the shock.

In situations in which the care recipient and caregiver already had a relationship before SCI onset (e.g., parent–child, partners), the analysis highlighted that the caregiver had to deal with shock and realize that the disability was permanent. The participants reported that during the acute rehabilitation phase they had to understand what happened, manage their expectations for recovery, and start coming to terms with the situation (Q7).

Feeling unprepared

The participants reported a lack of information, training, and guidance (Q8). When looking back, some interviewees stated that the focus was always on the person with SCI and resented a lack of support in preparing them for a “lifetime job” as a caregiver (Q9).

Adapting life and habits

Becoming a caregiver required adaptations in many domains: professional life (e.g., reducing working time), social life (e.g., less time for friends and hobbies), and family life (e.g., moving because the house could not be adapted) (Q10). Even in the cases of caregivers who took on the task years after SCI onset, there was a need to adapt their lives to the new situation (Q11). Adapting their lives and habits gave rise to new routines, which were often fixed and based around the needs of the care recipient (e.g., self-management activities such as emptying the bladder or laying down to prevent pressure injuries) (Q12).

Challenges related to housing, bureaucracy, and financial issues

Lacking appropriate housing.

Housing for people with SCI are lacking, in particular for young people, for whom neither nursing homes nor assisted living facilities for individuals with learning disabilities are adequate solutions (Q13). Moreover, caregivers who had started to feel the consequences of ageing wondered about who would take on caregiving when they are no longer able to provide the needed care. This worry especially affected caregivers whose care recipient was not accustomed to receiving assistance from homecare providers (Q14). In some cases, this worry was reinforced by bad experiences with nursing care facilities (Q15).

Dealing with bureaucracy

Several participants mentioned the challenges of dealing with the bureaucracy of insurance providers. They mostly complained about the complexity of the reimbursement system (Q16) or the strict rules (e.g., reimbursement for psychological support) (Q17). Some interviewees also stressed how mentally exhausting the process of applying for reimbursement or allowances could be (Q18).

Facing financial uncertainty

The participants reported that the often very long procedures to define disability benefits left families in limbo and facing financial uncertainty. The situation could be more or less difficult, depending on their financial situation prior to SCI onset and the caregiver’s work situation. Among the participants facing financial difficulty, some decided to continue working even after reaching official retirement age. Among those who were in a comfortable situation, some expressed worry for the future (Q19).

Challenges related to finding a balance between caregiving and personal life

Having to prioritize caregiving over personal wishes.

Some participants acknowledged that caregiving required sacrifice in terms of personal aspirations and freedom (Q20). Some interviewees stated that they had to give up vocational retraining or new professional experiences because these were not compatible with their caregiver role (Q21). Several others reported having to refuse invitations or give up activities when these did not fit with their caregiving schedule. Many caregivers acknowledged that caregiving affected their ability to make spontaneous plans (Q22).

Negotiating tasks and workload

Some caregivers described how they negotiated their workload and tasks (Q23). For example, the fear of mixing the roles of partner and caregiver led to a clear division of tasks: personal care (e.g., bowel management) was delegated to homecare providers, while the partner took on assistance (e.g., mobility). The analysis highlighted that this negotiation is an iterative process and can be triggered by several factors; for example, caregivers might realize that the situation is not sustainable anymore because of ageing, other commitments, or unclear role boundaries (e.g., being caregiver, life partner, and working partner), or care recipients might develop new needs that require new arrangements (Q24).

Finding time for themselves

Caregiving was often perceived as a full-time job, and a major challenge for caregivers was to find time for themselves (Q25). With good organization, it was possible to create free time, but such organization could be demanding. Some caregivers stressed that an activity had to be worthwhile; otherwise, the planning effort exceeded the pleasure (Q26). Furthermore, in many cases this would require the care recipient to accept external support, which was often undesired (Q27).

This study found that SCI caregiving most often begins unexpectedly and is characterized by two phases. The first phase is relatively short and central to becoming a caregiver, and it is marked by challenges related to adjusting to the role of caregiver and embedding this in their lives. The second phase, which is lifelong, is characterized by a number of recurrent challenges related to finding a balance between caregiving and personal life. The challenges related to housing, bureaucracy, and financial issues take place in both phases. Caregivers have to deal with these challenges to stay apprised of life changes (e.g., retirement) and newly emerging needs (e.g., how to deal with ageing in SCI).

These finding have two major implications. First, by describing how family members become caregivers, a time point in which vulnerable caregivers can be identified is suggested. Second, by describing the challenges and their timing, inputs for developing tailored programs and assessing the adequacy of the services available are provided.

In relation to the first point, the “birth” of a caregiver offers the earliest opportunity to identify people in need of support. Indeed, as past research has documented, becoming a caregiver is a turning point in one’s life trajectory [ 22 ], and for relatives, it seems to be less a matter of choice than a matter of responsibility and reciprocity [ 23 , 24 ]. Considering that feelings of control in caregiving relate to caregivers’ wellbeing and that the decision to become a caregiver is an indicator of control [ 25 ], caregivers who choose to take on caregiving might experience higher levels of control than caregivers who “slipped into it”. In addition, research has shown that less control in caregiving is associated with a lower household income, a lower subjective social position, and a higher objective caregiver burden [ 25 ]. Thus, it might be important to assess these factors to identify vulnerable caregivers in a timely manner.

The moment a person becomes a caregiver is a turning point. However, our findings indicate that being a caregiver is more a process than a state. Consequently, caregivers have to find resources throughout their lives to assist the care recipient without jeopardizing their own well-being. In line with earlier research [ 3 , 26 , 27 ], we believe that routine need-and-outcome assessments may be useful. In practice, rehabilitation clinics could offer a “caregiver checkup” in tandem with the checkup offered to the people with SCI. This is in accordance with Chan [ 28 ], who stressed the importance of considering a caregiver and care recipient as a single unit to promote understanding and preparedness post discharge.

During the “caregiver checkup”, caregivers could be screened with regard to the challenges they may be facing and the care recipient’s health status and functional independence, as these are associated with caregiver outcomes [ 29 , 30 ]. Such support might not only benefit caregivers, it could also positively influence the care recipient and the relationship between the two [ 13 , 31 ]. Furthermore, positive caregiver outcomes would ensure the caregiving is sustainable, thereby contributing greatly to the healthcare system.

The findings of this study might also provide an opportunity to check if the services available support caregivers in addressing the challenges they encounter over time. While adjusting to their new role, caregivers often feel unprepared and struggle with shock. Therefore, the effectiveness of educational programs in increasing caregivers’ confidence and competence in providing safe and effective care could be evaluated, as could the services addressing distress [ 32 , 33 ]. Similarly, the adequacy of services to support caregivers in dealing with challenges linked to housing, bureaucracy, financial issues, and balancing caregiving and personal life needs to be assessed. In Switzerland, several services (e.g., homecare providers, respite care) are available, but their use is limited and dependent on the characteristics of both the caregiver and the care recipient [ 2 , 34 ]. In about half of all cases, there seems to be no need of these services; however, sometimes costs, limited flexibility and care receiver’s rejection of external assistance are barriers to using these services [ 2 ].

Furthermore, our findings suggest that the timing of existing services should be considered. Indeed, a limitation is that most of these services, including caregiver education, are offered during or shortly after discharge from acute care or rehabilitation [ 35 ]. For educational programs this is problematic, as receiving too much information at once or at the wrong time might not be helpful [ 36 ] (p.153). Hence, we endorse the suggestion of Graf and colleagues [ 26 ] to offer support at different points in time. Based on the results of a “caregiver checkup”, rehabilitation clinics could identify caregivers in need and direct them to the appropriate services or provide them with tailored information. Linking caregivers to resources would help them find the appropriate support when it was most needed. In this regard, the introduction of case management programs could also help; in a recent study in Switzerland nearly half of the respondents reported that their need for case management was at best partially fulfilled [ 37 ].

This study has some methodological limitations. First, it relied on the memories of participants, who were reporting their (often very long) caregiving experiences. Prospective longitudinal studies could further explore the specific challenges of caregiving directly after first rehabilitation; however, the fact that saturation was reached supports the existence of several shared challenges. Second, the composition of our sample did not allow for performing comparisons among groups (e.g., caregivers with different relationships with the care recipient, male vs female caregivers). It is nonetheless important to notice that in Switzerland caregivers of people with SCI are mostly life partners and female [ 2 ], as in our sample. Finally, some of the challenges presented in this article might be specific to the Swiss context.

The findings of this study suggest that SCI caregivers go through two phases and that their lives are characterized by continuous adjustment to the ever-evolving role of caregiver. Furthermore, describing how family members become caregivers and the challenges they face over time might help improve the societal response to SCI by developing tailored interventions aimed at equipping caregivers with the necessary knowledge and skills. This will not only benefit caregivers, it is also likely to have a positive impact on the care recipient and the relationship between the two. Caring for caregivers is a way of giving back to these family members who support the healthcare system with their often invisible, but extremely valuable, work.

Data archiving

The transcripts of the interviews analyzed in the current study are available from the corresponding author on request. Transcripts will be provided in the original language (mostly German).

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Acknowledgements

We would like to express our gratitude to the Swiss National Science Foundation for funding this project as well as to the participants for their time and engagement. We also acknowledge the team of the Informal Care Project for their support and Natalie Lustenberger (NL) for her commitment and rigor in the recruitment and data collection as well as in the transcription of the interviews. We are grateful to Lisa Adey, who carefully checked the translation of all quotes from the interviews. Thank you also to the SwiSCI Steering Committee with its members Xavier Jordan, Fabienne Reynard (Clinique Romande de Réadaptation, Sion); Michael Baumberger, Hans Peter Gmünder (Swiss Paraplegic Center, Nottwil); Armin Curt, Martin Schubert (University Clinic Balgrist, Zürich); Margret Hund-Georgiadis, Kerstin Hug (REHAB Basel, Basel); Laurent Prince (Swiss Paraplegic Association, Nottwil); Heidi Hanselmann (Swiss Paraplegic Foundation, Nottwil); Daniel Joggi (Representative of persons with SCI); Nadja Münzel (Parahelp, Nottwil); Mirjam Brach, Gerold Stucki (Swiss Paraplegic Research, Nottwil); Armin Gemperli (SwiSCI Coordination Group at Swiss Paraplegic Research, Nottwil).

This project was supported by the Swiss National Science Foundation [grant number: 160158]. Open Access funding provided by Universität Luzern.

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Swiss Paraplegic Research, Nottwil, Switzerland

Claudia Zanini, Julia Amann, Mirjam Brach, Armin Gemperli & Sara Rubinelli

Department of Health Sciences and Medicine, University of Lucerne, Lucerne, Switzerland

Claudia Zanini, Mirjam Brach, Armin Gemperli & Sara Rubinelli

Department of Health Sciences and Technology, Health Ethics and Policy Lab, ETH, Zurich, Switzerland

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Contributions

CZ was involved in the design of the study, supervised data collection, conducted data analysis and interpreted the findings, was responsible for drafting, revising, and finalizing the manuscript for submission. JA was involved in interpreting the findings, drawing implications for practice as well as in drafting, revising, and finalizing the manuscript for submission. SR developed the study protocol and contributed to revising the manuscript. AG and MB developed the study protocol, provided feedback, and approved the manuscript draft.

Corresponding author

Correspondence to Claudia Zanini .

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Conflict of interest.

The authors declare no competing interests.

We certify that all applicable institutional and governmental regulations concerning the ethical treatment of human volunteers were followed throughout the study. The Ethics Committee of Northeast and Central Switzerland claimed no jurisdiction because no health-related data were collected. All participants have signed a written consent form.

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Zanini, C., Amann, J., Brach, M. et al. The challenges characterizing the lived experience of caregiving. A qualitative study in the field of spinal cord injury. Spinal Cord 59 , 493–503 (2021). https://doi.org/10.1038/s41393-021-00618-4

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Researching lived experience in health care: significance for care ethics

Affiliation.

• 1 Centre of Health Services and Nursing Research, Faculty of Medicine, Catholic University of Leuven, Kapucijnenvoer 35 blok, 3000 Leuven, Belgium. [email protected]
• PMID: 21372236
• DOI: 10.1177/0969733010389253

The aim of this article is to demonstrate the usefulness of qualitative research for studying the ethics of care, bringing to light the lived experience of health care recipients, together with the importance of methods that allow reconstruction of the processes underlying this lived experience. Lived experiences of families being approached for organ donation, parents facing the imminent death of their child and patients being treated using stem cell transplantation are used to illustrate how ethical principles are differentiated, modified or contradicted by the narrative context of persons concerned. The integration of empirical data into ethics will help caregivers in their ethical decision making and may enrich care ethics as a narrative and interpretative field.

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• Commentary: Care tactics--arguments, absences and assumptions in relational ethics. Paley J. Paley J. Nurs Ethics. 2011 Mar;18(2):243-54; discussion 262-71. doi: 10.1177/0969733010393070. Nurs Ethics. 2011. PMID: 21372237 No abstract available.

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Provision of digital health interventions for young people with ADHD in primary care: findings from a survey and scoping review

• Rebecca Gudka 1 ,
• Kieran Becker 1 ,
• Tamsin Newlove-Delgado 1 &
• Anna Price 1  

BMC Digital Health volume  2 , Article number:  71 ( 2024 ) Cite this article

Metrics details

People with attention-deficit hyperactivity disorder (ADHD) are at risk of negative health outcomes, with risks reduced through evidence-based treatments. Therefore, ensuring continued access to treatment for young people with ADHD, especially as they transition from child to adult services, is a priority. Currently many young people with ADHD are unable to access adequate care, with negative consequences for patients and their communities. Preliminary evidence suggests digital health interventions (DHIs) may act as an effective adjunct to usual care, helping overcome barriers to access, and improving outcomes by increasing understanding of ADHD as a long-term condition. The aim of this mixed methods study is to explore the healthcare information preferences of people with lived experience of ADHD in the primary care context and considers these in the light of the emerging body of literature on DHIs for ADHD. To explore this, a descriptive summary of cross-sectional survey responses was compared and discussed in the context of DHIs identified in a scoping review.

Digital apps, followed by support groups, were deemed the most useful information resource types by survey respondents, but were the least currently used/provided. Over 40% participants indicated a preference for signposting to all resource types by their general practitioner (GP), suggesting that GPs are credible sources for ADHD healthcare information. The scoping review identified nine studies of DHI for ADHD, consisting of games, symptom monitoring, psychoeducation, and medication reminders, with limited evidence of effectiveness/implementation.

Conclusions

People with ADHD state a preference for digital apps as an adjunct to usual care. However, these are currently the least provided information resource in primary care, indicating a key area for future development. The limited evidence base on DHIs for ADHD suggests combining digital apps and support networks, and utilising multimodal delivery methods may also enhance the delivery of healthcare information.

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Introduction

Attention deficit hyperactivity disorder (ADHD) has an estimated worldwide prevalence of 5% and is one of the most common paediatric neurodevelopmental disorders [ 1 ]. Approximately 40% people diagnosed with ADHD in childhood/adolescence will experience symptoms that persist into adulthood, which also predisposes them to the development of other psychiatric disorders such as anxiety and depression [ 2 ]. Experiencing ADHD symptoms can have a negative influence on many long-term outcomes for young people, such as their physical and mental health, academic and employment opportunities, services use, financial position, engagement in criminal activity and mortality [ 3 ].

Treatment options for ADHD include pharmacological and non-pharmacological interventions, which have both been shown to have short-term efficacy [ 4 , 5 ]. Long-term outcomes for people with ADHD can also be improved when they receive treatment, compared to when people with ADHD do not receive treatment [ 3 ]. The management of ADHD is most effective when pharmacological and non-pharmacological support is delivered in combination; medications are properly trialled and titrated; and patients have adequate access to specialist support [ 6 , 7 , 8 ]. However, there are many common barriers to managing ADHD including side effects and poor tolerability of medication, difficulty adhering to treatment, caregiver/professional misconceptions and stigma surrounding medication, and limited availability and accessibility of ADHD services in the UK [ 4 , 9 , 10 , 11 ]. Research shows that less than a quarter of people who required ADHD medication in the UK transferred successfully from child to adult mental health services, leaving them without easy access to specialist treatment [ 12 ]. This is of concern as the transition from adolescence into adulthood is a period where young people need access to services most [ 13 ].

With recent research indicating a failure of healthcare for young people with ADHD, there is a clear need for improvements to existing provision [ 14 ]. An increased role for primary care in the management of ADHD, may increase access to healthcare for currently underserved groups [ 6 ]. In addition, non-pharmacological treatments as an adjunct to existing practice may help to improve access to care by being used instead of or to support medication; while people wait for diagnosis, referral, or prescriptions; to support access; or to support psychoeducation. Recent changes to healthcare delivery in England, such as the formation of Primary Care Networks and Integrated Care Boards (ICB) which organise the provisions of care for local communities [ 15 , 16 ], present new opportunities to investigate innovative types of treatment/support which may be more accessible to patients via their general practitioner (GP). Digital health interventions (DHIs) offer remote access and the ability to be used repeatedly, which may provide cost effective support and enhance the delivery of healthcare for young people with ADHD via primary care, acting as an adjunct to mental health provisions.

Digital resources and interventions

Evidence suggests that DHIs for ADHD can be a beneficial adjunct to usual care and improve attention and social function for people with ADHD [ 17 , 18 ]. They may also help people with ADHD to understand and self-manage their ADHD by providing information to help make informed decisions about healthcare or acting as reminders and aids to perform self-management activities such as medication adherence. Types of DHIs include websites and online resources, mobile apps, computer software, Internet-delivered therapies, or gamified interventions. DHIs have advantages such as access in rural areas, at times of day which suit users, fewer side effects and less potential for misuse [ 18 ]. Shou et al . found that the reach of DHIs is broad in developed countries that have the infrastructure and hardware to participate [ 17 ]. Their systematic review found that both children and adults benefitted equally from DHIs, but there were no studies pertaining to adolescents and young adults (ages 16–25) [ 17 ].

There is growing interest in the value of DHIs to supplement the delivery of mental health support. However, ADHD is neglected in the evidence base of DHIs [ 19 ]. In particular, there is limited evidence for interventions which provide support for young people with ADHD, aged 16–25 [ 17 , 19 ]. This is of importance because of the transitions that young people often experience at this age, such as the transition from child to adolescent mental health services, within the education system, and leaving home/parental-care. This research has been designed to address these gaps in the literature, investigating the experiences of, and interventions for, 16–25-year-olds with ADHD.

The aim of this study is to compare the current availability of DHIs which could support the delivery of healthcare for young people with ADHD with the needs and expectations of people with lived experience of ADHD. This will provide evidence for future co-production of guidelines and efficacy studies which will improve primary care for young people with ADHD. The research questions are:

What current DHIs exist to support the delivery of healthcare for young people with ADHD?

What are the reported needs and expectations of people with lived experience with regards to information resources to support the delivery of healthcare for young people with ADHD in primary care?

What comparisons can be made between currently available DHIs and the needs and expectations of people with lived experience?

This work is part of a broader programme of work, the “Mapping ADHD services in Primary care” (MAP) study [ 20 ]. All methods involving human participants have been approved by the Yorkshire and the Humber – Bradford Leeds Research Ethics Committee (Reference: 22/YH/0132). All survey participants gave informed consent for their data to be used in this study. This is a mixed-methods study, with results presented from a scoping review and a subset of data from the online MAP survey.

Online survey

The survey methodology is described in more detail elsewhere [ 20 ] but is briefly summarised here. The survey was developed in response to a previous study – the Children and Adolescents with ADHD in Transition between Children’s and adult Services study [ 12 ] – which informed us on the priorities of young people with ADHD with regards to their experiences of primary care. These priorities guided the development of the survey questions. The survey was piloted with research advisory groups and revised to simplify the wording and ensure it was accessible and engaging for all participants. The final version of the survey was tested to ensure that they could be completed within ten minutes. The survey was hosted on Qualtrics, a General Data Protection Regulation compliant online survey tool, and the core team tested it to ensure there were no technical problems before disseminating the survey link.

Questions explored current primary care practice in relation to the National Institute for Health and Clinical Excellence guidelines for diagnosis and management of ADHD. Questions asked participants to reflect on their experiences when they were between the ages of 16 and 25 years old. This project uses data from a subset of questions described in Table  1 focussed on information resources that help to self-manage ADHD.

Participants

The population of interest included young people with ADHD and their supporters (e.g., parents, carers, guardians) over the age of 16 and living or working in England. Anyone over the age of 16 was eligible to take part, but participants were informed that the context of the study was centred around experiences of people aged 16–25 accessing primary care. The target sample size was 210, to allow for a minimum of six respondents from each ICB to ensure adequate coverage of each NHS ICB in England.

Dissemination and sampling

A convenience sample were recruited through various methods. A link to an online survey was shared with participants via emails. Snowball sampling was employed by asking the lead researcher’s relevant professional contacts to forward emails with the survey link to their networks. Additionally, research partners, the ADHD Foundation and UK Adult ADHD Network, shared the study via social media and their mailing lists. Finally, researchers shared the survey link on Facebook, Twitter and Instagram accounts associated with the study.

Halfway through dissemination, as per protocol, a geographic analysis of responses identified London as an underrepresented NHS region. Subsequently, dissemination was targeted to London using local ADHD groups and emails to contacts in relevant areas. A paid Facebook advertisement was created in the final week of dissemination to target underrepresented geographic regions. The survey was open for six weeks.

Data analysis

Descriptive data analyses were performed in Microsoft Excel. Respondents were categorised as either a young person with ADHD or a supporter of a young person with ADHD, depending on which they reported as their main role. There were four questions from the survey relevant to the aims of this report, described in Table  1 .

Participants were able to opt out of answering the information resource questions. Therefore, where participants did not answer a question on information resources, they were excluded from the analysis for that question and treated as “missing data.” These non-continuing participants have been recorded but were not included in the analysis. Due to the nature of the non-probability sample and the fact that missing data cannot be treated as random, multiple imputation of missing data has not been conducted.

For each question, the percentages of participants who indicated “yes” to each information resource type were summarised and tabulated, with 95% confidence intervals (CI) for proportions. These summaries were presented visually using bar graphs.

Scoping review

A literature search was conducted by RG in the following electronic databases: Medline, EMBASE and the Cochrane Library. The searches were conducted on 9th December 2022. Search terms were developed with the support of information specialists at the University of Exeter and included terms synonymous with “young people,” “people with ADHD,” and “digital/online interventions.” No date limit was applied to the search results because DHIs have only been available in recent years and thus we did not anticipate finding studies older than ten years. Texts were limited to English language and human participants only. The full search strategies are detailed in Additional File 1.

Studies were included if they measured effectiveness, acceptability, engagement with or experience of a DHI from a sample of young people with ADHD. The intervention had to be delivered online or use a digital technology and had to be self-administered in any country or healthcare setting. Neuro/bio-feedback interventions were excluded because the authors deemed them unable to be replicated in an a self-administered, at-home setting without clinician intervention. Studies of parent, parent–child or family interventions were also excluded. After discussion, the authors decided that any study which included some participants within the desired age range could have valuable results to help answer the research questions, but studies which were aimed specifically at age ranges outside of the specified range (e.g., 5–12-year-olds) would be less relevant and therefore not included. Therefore, after title and abstract screening, the inclusion criteria were narrowed to only include studies where at least one participant was within the target age range (16–25 years old). Full inclusion and exclusion criteria are listed in Additional File 1.

The records found were imported to Mendeley and duplicates were removed. All remaining titles and abstracts were dual screened by RG, AP, and KB. RG reviewed all the included titles and abstracts to apply the updated criterion regarding age of participants. Full-text articles were then screened by the same team of independent reviewers. Any disagreement between reviewers was discussed until agreement was reached. Where no agreement could be reached, the third reviewer was consulted.

RG charted data regarding details of the publication (author, year, country of origin), study design, type and delivery mode of interventions, characteristic of ADHD targeted by the intervention, and any described facilitators and barriers to implementing interventions. Results were synthesised using a narrative approach.

In total, there were 254 unique respondents to questions about information resources, reaching the target number of responses. Of these responses, 96 were a supporter of a young person with ADHD and 158 were a young person with ADHD aged 16 or over. Additionally, responses were received from all NHS ICBs in England. Table 1 provides the number of unique respondents and non-continuing respondents for each survey question.

Responses are described below. Tables 2 and 3 show the numbers and proportions of respondents who answered “yes” to information resource types for each question, represented visually in Figs.  1 and 2 .

Information use reported by people with lived experience of ADHD. Bar graphs which show the proportion of respondents with lived experience of ADHD who reported that they a)  currently use and b)  would find it useful to use each information resource type to help self-manage their ADHD. 95% confidence intervals are indicated

Information signposting by GPs reported by people with lived experience of ADHD. Bar graphs which show the proportion of respondents with lived experience of ADHD who reported that they a)  are currently signposted to and b)  would find it useful to be signposted to each information resource type by their general practitioner (GP) to help self-manage their ADHD. 95% confidence intervals are indicated

Use of information resources

With regards to which resources respondents currently use, websites were reported by the most respondents (90.9%), followed by a conversation with a friend (65.3%). Digital apps were the least reported in current use of information resources (19.8%). The order of current use of information materials versus which would be useful were exactly opposite. Digital apps (76.4%) followed by support groups (62.1%) were reported by the most participants as “would be useful,” with the least reported resource being websites (19.5%).

Signposting of information resources by GPs

Most respondents indicated they had not been signposted to any resources (81.9%), whereas 14.3% reported being signposted to printed materials, and 14.3% to websites. There is little distinction between information resource type with regards to how many respondents reported that they would be useful to hear about from their GPs, with only 11% difference between the most and least reported information resource, websites (54.2%) and video clips (43.2%) respectively.

The database searches identified 2498 records (Medline, Embase and Cochrane Library yielded 915, 1356, and 227 records respectively). From these, a total of nine records were identified for inclusion [ 21 , 22 , 23 , 24 , 25 , 26 , 27 , 28 , 29 ], see the PRISMA flow diagram for details (Additional File 1). The included studies have publication dates ranging from 2010 to 2022. Five studies were conducted in the USA, with Denmark, Sweden, Israel, and Australia also being home to one study each. Details related to the samples, intervention types and mode of delivery are provided in Table 4 . Only two RCTs were identified [ 23 , 25 ], and four pilot studies [ 22 , 25 , 26 , 29 ]. Intervention types included three gamified interventions [ 22 , 23 , 28 ], two wearable symptom monitoring devices [ 26 , 29 ], one psychoeducation programme [ 27 ], one medication reminder service [ 21 ], one symptom monitoring survey [ 24 ] and one background sound [ 25 ]. Three interventions were delivered using a digital app [ 26 , 27 , 29 ], two using an online portal [ 24 , 27 ], two via computer programmes [ 22 , 23 ], one via SMS text messaging [ 21 ], and one via compact disc [ 25 ]. The intervention type and mode of delivery for each identified intervention are visualised in Fig. 3 . The Fitbit Flex intervention evaluated by Schoenfelder et al., was delivered primarily via a digital app, but combined delivery methods by also using an invite only Facebook group which allowed participants to interact with facilitators and other participants to receive encouragement, social support, and rewards for meeting goals. This DHI aimed to promote physical activity and reduce ADHD symptoms. Participants wore a wearable activity tracker (Fitbit Flex), which collected data about energy and movement, and then synced to a mobile app that provided participants with visualisations of the data and feedback towards goals.

Visual representation of types of digital health intervention identified in the scoping review. Interventions identified were binaural auditory beats (BAB) [ 25 ], SMS text reminders [ 21 ], Fitbit Flex movement tracking [ 29 ], StopWatch movement tracking [ 26 ], Ecological momentary assessment (EMA) [ 24 ], Internet-based self-help comprehensive behavioural intervention for tics (ICBIT) [ 27 ], Method of Loci (MoL) [ 28 ], Scientific brain training programme (SBTP) [ 22 ], and Drive Smart [ 23 ]

Of the nine interventions identified, six measured ADHD symptoms as the target for their intervention [ 22 , 24 , 26 , 27 , 28 , 29 ]. The remaining three were designed to target different outcomes which may be negatively affected by ADHD: hazard perception while driving, homework problems, and medication engagement [ 21 , 23 , 25 ].

All studies provided interim results which showed improvements in ADHD outcomes, although two studies found no significant group differences between the intervention and control groups: one tested a computerised brain training exercise against a control of Tetris, and one used binaural auditory beats against a placebo sound [ 22 , 25 ]. Four studies did not use a control group, due to being feasibility or pilot studies focussed on intervention acceptability, hence it is difficult to determine whether the outcomes of these studies are a result of the intervention or another variable [ 24 , 26 , 28 , 29 ].

Some common barriers to implementing interventions were reported, with suggestions for addressing these. These included having a lack of sustained attention whilst trying to do the intervention and forgetting to do it [ 22 , 28 ]. Interventions which offered reminders were deemed as useful by participants, but participants recommended increasing the number of reminders [ 22 , 28 , 29 ]. Another recommendation was ensuring that images are interesting to the relevant age group and modernised, as some of the interventions were initially developed for different age groups or developed years prior to the studies being conducted [ 22 , 23 , 26 , 28 ].

This mixed methods study aimed to find out about the needs and expectations of people with lived experience with regards to information resources, and the current availability of DHIs, to inform the future development and implementation of DHIs for young people with ADHD. The findings from our survey show that digital apps would be deemed the most useful by young people with ADHD and their supporters, followed by support groups. Interestingly, results also show that respondents stated a preference for printed materials over websites. Results from questions about signposting of resources show that young people with ADHD and their supporters would find signposting to any information resource from GPs useful, with little difference between resource types.

The scoping review identified literature relating to nine DHIs relevant to young people with ADHD. The review identified some common factors which influence acceptability and implementation of ADHD interventions, including difficulty engaging in interventions due to a lack of sustained attention; increasing engagement and participation using more reminders and up-to-date visuals; and ensuring interventions are tailored to the target age group.

From the results, three key implications for the future development of DHIs have been identified and are discussed below.

Enhance digital delivery using social support

Based on the finding that a digital app followed by a support group would be considered the most useful intervention for people with lived experience, the Fitbit Flex intervention which combines these two elements identified in the scoping review is noteworthy [ 29 ]. Evidence shows that support groups and peer support, including closed Facebook groups, can improve mental health outcomes and symptom self-management in adolescents [ 30 , 31 , 32 , 33 ]. They provide users with social connectedness, empowerment, and the ability to learn from others [ 30 , 33 ]. However, this research is limited to few empirical studies, especially with regards to the use for support groups for ADHD. The Fitbit Flex study by Schoenfelder et al. was a feasibility trial [ 29 ]. Although the results show that there was a significant increase in physical activity, and a decrease in self- and parent-reported ADHD symptoms, it requires more testing and development to determine efficacy and an investigation into the active components that may be leading to an improvement in symptoms. Conversely, an open-label pilot study also identified in the scoping review, which aimed to test the ability of a wearable activity tracker device to treat hyperactivity, also observed an improvement in ADHD symptoms despite not utilising a social support element [ 26 ]. Overall, the evidence shows promise in improving ADHD symptoms using wearable monitoring devices and combined with results from the survey shows that enhancing the delivery of digital apps with online social support may be effective and meet the needs of people with lived experience.

Increase engagement using up-to-date, multimodal communication methods

Respondents reported that they most frequently access information from websites, despite websites being regarded as the least useful information resource. Printed materials were reported as useful by more respondents than websites. This is in line with previous research, which shows that printed patient education information is deemed more acceptable to patients than digital print [ 34 ]. Online information is perceived as more difficult to read than the equivalent information in printed format [ 34 ]. Additionally, for people with ADHD comprehension of written information is worse when the information is delivered digitally rather than in print [ 35 ]. Another study of how people prefer to receive healthcare information found that participants value a combination of written, audio and video materials, suggesting that the most useful source of information would utilise multimodal communication methods [ 36 ]. It is important to consider some limitations of these studies – the samples were small, and from limited populations, such as a single clinic, university, or level of education, which limits the generalisability of the results. Nonetheless, these findings are of interest for the development of DHIs for young people with ADHD, because they suggest that DHIs may not be useful as sources of written information about ADHD. If used as information resources, DHIs should use multimodal methods of communication.

DHIs may also be more useful when they involve active participation and/or gamified tasks, rather than being designed as information sources. However, one of the common barriers of implementing some gamified DHIs identified in the scoping review was that difficulties with sustained attention limits the use of certain apps [ 22 , 28 , 29 ]. Ensuring that graphics and user interfaces are modern and visually appealing; interventions are tailored to the target age range; and having adequate reminder messages/systems in place were suggestions from participants. This may attract more attention from young people with ADHD, enabling them to stay engaged and complete the intervention.

Ensure interventions are acceptable to GPs and other health practitioners

Finally, when asked what would be useful to be signposted to from GPs, people with lived experience had little preference for information resource type, but each resource was identified as “would be useful” to hear about by over 40% of respondents. A previous study of information resource preference found that health professionals are viewed by parents as a trusted source of information about ADHD [ 37 ]. These results imply that resource type is less important to people so long as the recommendation comes from a credible source. The implementation of information provided by a credible source is a recognised behaviour change technique, which increases uptake of behaviours [ 38 ]. Similarly, to Sciberras et al . we asked participants about information sources and modes of information, but Sciberras et al . also asked participants about the quality and content of information [ 37 ]. This enabled data to be collected regarding the reasons why certain sources are deemed as preferential over others, whereas our study does not allow these inferences to be drawn. Data from a future qualitative study would be beneficial, to provide a rich and in-depth understanding of the preferences of people with lived experience concerning information resources.

Nevertheless, this finding is of interest because it shows that interventions should not only be deemed acceptable by young people, but also by GPs. Research shows that where GPs have a lack of knowledge about a treatment for ADHD, they are left unwilling to prescribe it to young people [ 39 ]. This is supported by a systematic review of GPs as gatekeepers to diagnosis and treatment for people with ADHD, which found that there was a general reluctance by GPs to become involved in the treatment of ADHD – oftentimes due to a lack of time and knowledge [ 11 ]. Thus, if an intervention is viewed as being time-saving and easy for GPs to understand and operate, it may be more acceptable to them, and so they may be more likely to engage and prescribe it or signpost patients towards it.

Outstanding questions for future research

The survey we have reported on here was also shared with health practitioners with questions tailored to them regarding which information resources they currently signpost young people with ADHD to, and what information resources they would find useful to help them make clinical decisions about the care of young people with ADHD. During the screening phase of the scoping review, the researchers observed multiple texts about DHIs which could be useful to health practitioners for the management of ADHD in primary care, which suggests there is a body of evidence for tools that might assist with clinical decision making. Thus, it may be beneficial to conduct a similar study with the target population of health practitioners in primary care who are involved in the management of ADHD.

A key finding from the scoping review is that relatively few studies focus on the development of interventions for adolescents and young people with ADHD. Other systematic reviews in this area of research find interventions aimed at younger populations, but the evidence for people aged 16–25 is limited [ 17 , 19 ]. This was the first review to exclusively focus on this age range, and only nine papers were yielded. Given the importance of transition into adulthood for people with ADHD, developing interventions for this age group should be of high priority. In addition, while many of the results from the included studies were promising, they were generally limited to open-label, non-randomised or pilot and feasibility trials, which demonstrates the need for robust randomised controlled trials (RCTs) which have adequate statistical power to measure the true efficacy of currently available DHIs.

Strengths and limitations

This analysis provides the first overview of stakeholder reported views on the provision of information resources to help young people self-manage their ADHD in England. Additionally, the scoping review is the first to scope out the development of resources specifically for young people with ADHD in the target age range, 16–25 years old, identifying facilitators and barriers for use of resources in primary care. The methods of disseminating the survey link, including utilising the mailing lists of partner organisations and charities enabled us to reach more than the target number of responses and resulted in a good geographic spread of data with at least six respondents from each ICB in England. However, despite reaching a high number of respondents in each ICB, the survey may not be nationally representative due to the low number of responses relative to the number of people in England with ADHD. Furthermore, participants were not randomly selected due to the use of non-probabilistic sampling strategies.

The survey also did not collect demographic information, such as gender, ethnic origin, or age because our priority was keeping the survey short and accessible for people with ADHD, who often have attentional difficulties. Our lack of detailed demographic information limits the generalisability of this sample. It is also possible that the non-probabilistic methods used to sample respondents introduced responder bias. Respondents may have been more likely to complete the survey if they have had extremely negative or positive experiences with their GPs that they wanted to share, so the views presented here may not be reflective of the rest of the population. In addition, most of the advertising for the survey was done online, so respondents had to have access to a computer or mobile device and be computer literate. Furthermore, since participants could be any age over 16, it is difficult to tell whether results exclusively pertain to the experiences of young people aged 16–25, despite framing the context of the research as such prior to the survey and in the wording of survey questions. Results are also susceptible to recall bias should participants over the age of 25 be reflecting on experiences from when they were aged between 16–25.

In addition to limitations regarding the age-range of participants in our survey sample, we also acknowledge the broad age range of participants in included studies in the scoping review which may limit the relevance of findings to people aged 16–25. Due to an underdeveloped body of literature regarding young people with ADHD between the ages of 16–25, this research took an inclusive approach to eligibility of studies which included participants outside of our population of interest. While this enabled us to identify interventions which are being developed/evaluated that may be relevant to this age range, the inclusion of studies which have a mean participant age outside of our population of interest may skew results and impede the ability to draw conclusions for individuals aged 16–25. Quality assessments of the records included in the scoping review were also not performed because this study aimed to identify the scope of the available evidence. The results were synthesised narratively, with some general shortcomings of the evidence highlighted. However, it would be beneficial to conduct a full systematic review which maintains a narrower inclusion criteria regarding age of participants and includes rigorous quality evaluation to fully assess the state of the evidence base regarding current development and provision of DHIs for the management of ADHD symptoms for young people with ADHD. A future systematic review on the same topic is planned [ 40 ].

This study investigates the current availability of peer reviewed research on DHIs for young people and ADHD with the preferences of people with lived experience. The scoping review findings highlight that people aged 16–25 with ADHD are an underrepresented population in research into DHIs. By enhancing DHIs using social support groups, we may be able to develop more acceptable DHIs which meet the unique needs of this population. In addition, DHIs as information resources may be optimised by avoiding written text and by using multimodal communication methods. Lastly, people with lived experience may value more signposting from their GPs to information resources, as GPs act as a credible source of information. Thus, interventions also need to be acceptable to GPs to ensure they are willing to prescribe or signpost patients towards them. Further research is required to evaluate and understand the preferences of stakeholders with regards to information resources, and RCTs are necessary to improve the robustness of the evidence base for using DHIs to help people aged 16–25 self-manage their ADHD.

Availability of data and materials

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

Abbreviations

Attention deficit hyperactivity disorder

Digital health intervention

National Health Service

General practitioner

Integrated care board

Mapping ADHD services in primary care

Confidence interval

Randomised controlled trial

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Acknowledgements

We would like to thank all those who have contributed to this study, including the healthcare professionals, and people with ADHD and their supporters who have been involved in the conception and planning of this research. Also, the colleagues, collaborators, and research partners that have supported every aspect of this study.

This project is funded by an NIHR Three School’s Mental Health Research Fellowship (MHF008). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. This project is supported by the NIHR Clinical Research Network South West Peninsula.

TND was supported by a National Institute for Health Research (NIHR) Advanced Fellowship during the preparation of this paper (NIHR300056).

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AP and TND conducted development work to conceptualise the research idea. All authors actively contributed to the research design. RG analysed and interpreted the data from the national survey and coordinated the scoping review. RG, KB and AP contributed to scoping review screening and study selection. AP and TND provided academic mentorship. All authors read and approved the final manuscript.

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Additional file 1. Additional scoping review methods A – Scoping review full search strategy, B – Full inclusion and exclusion criteria for identified studies, C – PRISMA flow diagram of search and screening results.

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Gudka, R., Becker, K., Newlove-Delgado, T. et al. Provision of digital health interventions for young people with ADHD in primary care: findings from a survey and scoping review. BMC Digit Health 2 , 71 (2024). https://doi.org/10.1186/s44247-024-00129-1

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Caregivers' experiences and perspectives on caring for the elderly during the COVID‐19 pandemic: A qualitative systematic review

Huichao zhang.

1 School of Nursing, Nanjing University of Chinese Medicine, Nanjing Jiangsu, China

Nannan Wang

Yuqing wang.

2 Geriatric Hematology/Radiotherapy Ward, the First Affiliated Hospital of Nanjing Medical University, 300 Guangzhou Road, Nanjing Jiangsu, China

The goal of this study was to explore caregivers' experiences, perspectives, emotions, knowledge and needs in caring for older people during the COVID‐19 pandemic. These included, but were not limited to, experiences in hospital care, home care and nursing home care.

Because of the high mortality rate associated with the COVID‐19 pandemic, senior care is critical. During the COVID‐19 pandemic, caregivers caring for older people have had unique experiences potentially affecting the quality of care provided. This topic has received substantial attention since the start of the pandemic and has been studied by numerous researchers. However, experiences may differ among countries and time periods. In addition, no qualitative systematic reviews on this topic appear to have been published.

In this systematic review of qualitative studies, data were collected from the following electronic databases: PubMed, Web of Science, Scopus, CINAHL (Cumulative Index to Nursing and Allied Health Literature), Science Direct and PsycINFO. Titles and abstracts were screened according to the inclusion and exclusion criteria, full texts were screened and the methodological quality of included studies was assessed with the Joanna Briggs Institute Critical Appraisal Checklist for Qualitative Research by two independent reviewers.

Key issue(s)

A total of 141 findings were extracted and aggregated into 20 categories; 6 synthesized findings were identified.

This review indicates caregivers' experiences and perceptions regarding caring for older people during the COVID‐19 pandemic. The results of a qualitative systematic review show that caregivers' emotions, cognitions and knowledge have affected the quality of caregivers' senior care services during the pandemic. Caregivers caring for older adults should practise self‐awareness, understanding their knowledge and attitudes to improve the quality of senior care. Moreover, health care administrators and policymakers should make concerted efforts to cultivate a better working environment.

Implications for Nursing Management

Managers should formulate timely and effective management strategies. During the COVID‐19 pandemic, the workload of caregivers has increased, thus requiring better scheduling by managers. Furthermore, managers should consider the negative emotions of caregivers and prevent negative emotions from affecting their work. Besides, virtual technology should be applied to senior care and psychological support be provided for caregivers in this special care setting.

1. INTRODUCTION

The COVID‐19 pandemic has negatively affected health care, caused disruptions in daily life and prompted concerns globally. It has infected approximately 516 million individuals worldwide, and 6.25 million people had died as of May 2022 (Our World in Data,  2022 ). The COVID‐19 death rate for people 18–29 years of age was 0.7%, whereas the mortality rate for those 65 years and older was approximately 25%, according to the CDC (Centers for Disease Control and Prevention,  2022 ). Furthermore, older people are more likely than younger people to become very ill from COVID‐19. Experts expected that this pandemic would not be rapidly controlled (Telenti et al.,  2021 ). There is no doubt that prevention, treatment and nursing care for older people are critical. Caregivers can draw insights into providing better quality care for older people during COVID‐19.

Some recent studies (Lasater et al.,  2021 ; Walton et al.,  2020 ) have demonstrated that caregivers may experience negative emotions such as anxiety and sadness, which may affect normal care during the pandemic. As the pandemic continues, health care workers require mental health support, encouragement and a sense of purpose (Walton et al.,  2020 ). Furthermore, treatment and care is more complex for older adults than other populations, particularly during a pandemic. The work of caregivers involves continual contact with older adults, which can lead to different experiences and emotions (Ortega‐Rodríguez & Solís‐Sánchez,  2019 ).

Many researchers have conventionally conducted quantitative research and interventional systematic reviews to assess the experiences of caregivers caring for older people (Blanco‐Donoso et al.,  2021 ; Greene et al.,  2020 ; Lanièce Delaunay et al.,  2020 ; Tan & Seetharaman,  2020 ). The literature most similar to our study is a systematic review (Gray et al.,  2021 ) examining the experiences of home care staff to better understand how to support them during the ongoing pandemic and in the future. However, limitations exist regarding the study years, methods and results. First, 14 articles were included, but most were quantitative studies published in 2020. The relevant literature has since been updated with the development of the COVID‐19 pandemic. Second, their systematic evaluation has attached importance to quantitative literature but lacks in‐depth analysis of qualitative research, which provides more information summarizing the experiences and emotions of the participants. Using a qualitative method to investigate caregivers' experiences and perspectives on caring for older people during the COVID‐19 pandemic can help gain a better understanding of the challenges. Consequently, integration of qualitative research findings (qualitative systematic review) has become a major research area. Qualitative systematic reviews have the benefit of combining qualitative research with a systematic method, thus aiding in the development of more comprehensive and general theories; moreover, they add breadth and depth to the research question by focusing on the views and feelings of the participants in interventions. Finally, their results lack the summary and guidance of management.

To our knowledge, no prior qualitative systematic review has examined caregivers' experiences in managing older people during the COVID‐19 pandemic. By consolidating these unique experiences, this review has the potential to guide care practice and management in senior care settings or any area of senior care in the context of the COVID‐19 pandemic or other infectious diseases. This review aimed to synthesize the best available evidence in exploring caregivers' experiences, perspectives, emotions, knowledge and needs in caring for older people during the COVID‐19 pandemic. These included, but were not limited to, experiences in hospital care, home care and nursing home care.

2.1. Design

This systematic review was based on the Joanna Briggs Institute methods for qualitative systematic reviews to explore caregivers' experiences and perspectives on caring for older people during the COVID‐19 pandemic. This approach is grounded in pragmatism and phenomenology to aid in synthesis of qualitative studies (Lockwood et al.,  2015 ). A protocol was developed and registered on PROSPERO (CRD42022325933), the international prospective register of systematic reviews relevant to health and social care. During the synthesis of this review, the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) statement was used as guidelines (Tong et al.,  2012 ). The research work was performed between February 2022 and July 2022.

2.2. Eligibility criteria

This review considered studies including caregivers of older people (≥65 years of age) during the COVID‐19 pandemic. Caregivers were defined as personnel who take care of older people, particularly nurses and other medical staff. The topics of interest in this review were the experiences, perceptions, emotions, knowledge and needs of caregivers caring for older people during the COVID‐19 pandemic. These included, but were not limited to, experiences in hospital care, home care and nursing home care. The topics of interest also included experiences in senior care management from the beginning of the pandemic to the present. Only literature from December 2019 to May 2022 was considered. This review considered full‐text studies in English with qualitative designs, such as phenomenology, grounded theory, ethnography, qualitative descriptive studies and mixed research. Unpublished studies were excluded (Table  1 ).

Eligibility criteria

2.3. Search strategy

A three‐step strategy was used in this review. First, databases such as PubMed and the PROSPERO (international prospective register of systematic reviews) were searched to confirm that no similar review had been conducted or registered. An initial search was conducted in PubMed to identify index terms and keywords of relevant articles. Second, on the basis of a preliminary search of the literature, key terms were identified to generate a full search strategy, which was structured by using the PICoS (Population, phenomena of Interest, Context and type of Study) framework. Six databases were searched (PubMed, Web of Science, Scopus, CINAHL [Cumulative Index to Nursing and Allied Health Literature], Science Direct and PsycINFO) with a publication date between December 2019 and May 2022. Grey literature was also searched to decrease publication bias and provide a more balanced understanding of the topic of interest (Paez,  2017 ). For PubMed as an example, with combined index terms and keywords, the following terms or closely related expressions were used along with the Boolean operators OR and AND: (‘COVID‐19’ OR ‘Coronavirus’ OR ‘Sars Covid’) AND (‘caregiver’ OR ‘nurse’ OR ‘nursing’ OR ‘staff’ OR ‘practitioner’) AND (‘Experience’ OR ‘Experiences’ OR ‘Feeling’ OR ‘Feelings’ OR ‘view’ OR ‘emotion’ OR ‘perspective’) AND (‘old’ OR ‘older’ OR ‘elderly’ OR ‘seniors’ OR ‘geriatrics’). Finally, the reference lists of eligible articles and systematic reviews were manually searched to identify additional studies.

2.4. Study selection

After the search, the retrieved articles were imported into the bibliographic software Citavi 6, and duplicates were removed. Titles and abstracts were screened against the eligibility criteria, and studies meeting the inclusion criteria were sourced and exported for full text review. The entire screening process was conducted by two independent reviewers using a standardized set of eligibility criteria. After screening of the titles and abstracts, the full texts of potential studies were retrieved to confirm their eligibility. Articles with full text screening that did not meet the inclusion criteria were excluded. To search the literature as comprehensively as possible, we reserved more relevant documents for the next full‐text search. Finally, the reviewers read the remaining full‐text articles and retained the articles relevant to the topic of this article. Any disagreements between reviewers were resolved through discussion or with a third reviewer. The inter‐rater reliability test was aimed at achieving at least moderate agreement, with Cohen's kappa statistic (κ) > 0.4 (McHugh,  2012 ). This literature search was conducted according to a Preferred Reporting Items for Systematic Reviews and Meta‐Analyses (PRISMA) flow diagram (Figure  1 ).

Flow diagram for study selection: Preferred Reporting Items for Systematic Reviews and Meta‐Analyses (PRISMA). CINAHL, Cumulative Index to Nursing and Allied Health Literature

2.5. Quality appraisal

The principal author summarized the characteristics of each study to provide contextual information on the first author, year of publication, country of study, participants, setting, aim, design, data collection/analysis and main findings. They were recorded and entered into a table (Table  2 ).

Summary of main characteristics

Abbreviations: ACP, advance care planning; ECHO COE‐LTC, Extension for Community Healthcare Outcomes Care of the Elderly Long‐Term Care; LTC, long‐term care.

The JBI Critical Appraisal Checklist for Qualitative Research was used to assess the rigour of the qualitative research (JBI,  2020 ). The Mixed Methods Appraisal tool (Hong et al.,  2019 ) was used for mixed method studies. The two reviewers appraised the findings independently, and any disagreements were resolved through discussion with the third reviewer. The results of the critical appraisal are reported in a table (Table  3 ). All studies, regardless of their methodological quality, underwent data extraction and synthesis, to present a complete systematic review of all existing findings regarding this topic of interest (Butler et al.,  2016 ).

Results of the critical appraisal of included studies

Note : Q1: Is there congruity between the stated philosophical perspective and the research methodology? Q2: Is there congruity between the research methodology and the research question or objectives? Q3: Is there congruity between the research methodology and the methods used to collect data? Q4: Is there congruity between the research methodology and the representation and analysis of data? Q5: Is there congruity between the research methodology and the interpretation of results? Q6: Is there a statement locating the researcher culturally or theoretically? Q7: Is the influence of the researcher on the research, and vice versa, addressed? Q8: Are participants, and their voices, adequately represented? Q9: Is the research ethical according to current criteria or, for recent studies, is there evidence of ethical approval by an appropriate body? Q10: Do the conclusions drawn in the research report flow from the analysis, or interpretation, of the data?

Abbreviations: U, unclear; Y, yes.

2.6. Data analysis

Data analysis and synthesis consisted of four steps (Sandelowski & Barroso,  2003 ): coding, sorting, synthesizing and theorizing. The first process of data analysis was conducted by two authors and began with reading and re‐reading the articles. All qualitative data were extracted from the original articles and grouped by identification of topically similar codes. At this stage, subjective categories were generated by sorting. The articles were then subjected to thematic analysis, which yielded a final set of interpretive themes (Table  4 ) (van Grootel et al.,  2020 ).

Synthesized findings and categories

ConQual ratings were assigned to each synthesized discovery to assess confidence. The rating method assessed the reliability and believability of each study and finding (Munn et al.,  2014 ). When the five criteria specified in JBI's critical assessment technique were not satisfied throughout the included studies, the dependability was downgraded. Credibility was also decreased when some findings contained in a synthesized finding were deemed ambiguous (Lim et al.,  2022 ). The final synthesized findings might be used to formulate recommendations for health care practice or to inform policymaking (Table  5 ) (Munn et al.,  2014 ).

ConQual ‘summary of findings’

3.1. Search results

The results of the search are presented in a PRISMA flow diagram (Figure  1 ) (Moher et al.,  2015 ). The search generated 904 studies, 684 of which remained after duplicates were removed. After a review of the titles and abstracts, 590 were excluded, and 94 full texts were intensively read. Subsequently, 81 texts were excluded. Thirteen full texts reviewed according to the JBI summary for eligibility against the inclusion criteria were included in this qualitative systematic review.

3.2. Study characteristics

The characteristics of the included studies are summarized in Table  2 . The studies were conducted in the United States ( n  = 1), Canada ( n  = 1), China ( n  = 2), the Netherlands ( n  = 2), England ( n  = 3), Ireland ( n  = 1), Italy ( n  = 1), Pakistan ( n  = 1) and Spain ( n  = 1). Eleven studies were qualitative, and two used mixed methods. The qualitative studies used various methodological approaches, including interpretative qualitative study, phenomenological approach, qualitative exploratory study, empirical qualitative interview study, qualtrics survey, qualitative descriptive study, empirical phenomenological approach and constructivist grounded theory. The study settings comprised nursing homes and geriatric wards. Among the study participants, caregivers included nursing home nurses, hospital nurses, advanced clinical practitioners, senior nursing practitioners, physicians, health care providers, and owners/managers and staff of residential care settings for older people. Most studies defined the age range of older people. Data were collected through focus group discussions conducted through video communication, face‐to‐face or by telephone, as well as individual interviews, open‐ended questionnaires, focus group interviews, semi‐structured interviews, field notes or document reviews. Interestingly, researchers increasingly chose to perform qualitative interviews online or by telephone.

3.3. Methodological quality

The quality of the included articles is summarized in Table  3 . Six studies met all criteria. Only half of the included articles located the researchers culturally or theoretically. Two articles (Krok‐Schoen et al.,  2021 ; Ter Brugge et al.,  2022 ) did not indicate whether ethical approval was obtained. Furthermore, three articles (Bilal et al.,  2020 ; Lingum et al.,  2021 ; Sizoo et al.,  2020 ) reflected that researchers' influences on the research were unclear.

3.4. Review findings

Six synthesized findings were identified from 20 categories with 141 findings (synthesized findings in Table  4 ): (1) Caregivers protect older people against COVID‐19 pandemic; (2) caregivers are concerned about older people's mental and physical health; (3) caregivers show various emotions and mentalities; (4) caregivers display preferences in their learning needs; (5) difficulties of management; and (6) affirmation of self‐worth.

• Synthesized Finding 1: Caregivers protect older people against COVID‐19 pandemic.

This synthesized finding was underpinned by 18 extracted findings and subdivided into 3 categories: ‘strict visitor restriction’, ‘advance care planning for older people’ and ‘increasing use of virtual technology and telemedicine’. This synthesized finding demonstrated that caregivers have formulated detailed plans for prevention to protect older people from infection during the pandemic. The following findings contributed to this synthesized finding (Bilal et al.,  2020 ; Castaldo et al.,  2022 ; Krok‐Schoen et al.,  2021 ; Lingum et al.,  2021 ; Marshall et al.,  2021 ; Morley et al.,  2022 ; Sizoo et al.,  2020 ; Sweeney et al.,  2022 ; Ter Brugge et al.,  2022 ). Caregivers have needed to restrict visitors to hospitals and decrease visits between older people and their relatives. ‘ It remains a “Devil's bargain”: protecting clients from infection (keeping the outside world out) and having contact with the people you love ’ (Sizoo et al.,  2020 ). They thus have become a bridge between older people and their relatives. ‘ It happened, especially for older people, that grand‐children and children brought letters, photos, and wanted us to put them near their bed, and this was very touching, even if the person was not conscious, but for them, it was important […]. Or they sent us by phone the photo of the grandchildren, of the family, and they wanted us to show them to the patient ’ (Castaldo et al.,  2022 ). Furthermore, caregivers can detect loneliness in older people because of visitation restrictions and help them cope with lockdown (Marshall et al.,  2021 ; Sizoo et al.,  2020 ). ‘ Her fear, sadness and loneliness, very tangible and strongly present, mimicking depression […] ’ (Sizoo et al.,  2020 ). Furthermore, to prevent caregivers from carrying the COVID‐19 virus, the freedom of caregivers has also been restricted (Sweeney et al.,  2022 ).

Although caregivers have taught many older people to use technology to talk with their relatives, many older people have remained dissatisfied. ‘ I prefer to see my relatives face to face and to be together with them physically—I never use these instruments ’ (Nielsen et al.,  2021 ). Simultaneously, the visiting regulations of nursing homes have been more free than those in general hospitals. During the pandemic, many older people at homes had difficulties in seeing physicians in the pandemic. They have been able to use virtual technology for telemedicine. Visiting restrictions have been implemented to minimize the traffic in nursing homes and thus prevent the introduction of COVID‐19. ‘ It means they don't have to come out of the house; they don't have to, you know get to the surgery because they struggle with that … they absolutely love it ’ (Morley et al.,  2022 ). In conclusion, most nurses have made nursing plans for senior care in the same manner as before the pandemic. Many nurses indicated the importance of virtual technology in senior care in this pandemic. ‘ We created a new service, so the frailty home treatment service, where we would be looking after almost like a virtual ward of poorly people in the community … ’ (Morley et al.,  2022 ).

• Synthesized Finding 2: Caregivers are concerned about older people's mental and physical health.

A close relationship exists between Synthesized Finding 1 and Synthesized Finding 2. Synthesized Finding 2 was underpinned by 17 extracted findings and subdivided into 3 categories: ‘concern for older people's mental state’, ‘concern for older people's physical state’ and ‘arrangement of hospice care for dying older people’.

Caregivers have protected older people against COVID‐19 pandemic. They have responded positively to the policy of restricting visitors. However, as a consequence, the quality of life of most older people has markedly decreased. Many caregivers worry about the mental and physical health of older people. ‘ I worry about the impact of restricting visitors emotionally and clinically .’ ‘ I think a lot about my older patients and their safety during this pandemic‐this keeps me up at night ’ (Krok‐Schoen et al.,  2021 ). This synthesized finding is an effect of the previous finding.

In addition, two studies have shown that geriatric practitioners providing hospice care for older people face difficulties that did not exist in non‐pandemic situations (Castaldo et al.,  2022 ; Sizoo et al.,  2020 ). Caregivers often stand in for the family in ensuring the best possible death during the last farewell, because of the visitation restrictions. ‘ I saw physicians cry … or that there was nothing more to be done, both for the older … ’ (Castaldo et al.,  2022 ).

• Synthesized Finding 3: Caregivers show various emotions and mentalities.

This synthesized finding was underpinned by 35 extracted findings and subdivided into 4 categories: ‘fear of contagion’, ‘pressure increase’, ‘negative emotions’ and ‘emotional exhaustion’, in that order. The experiences described how COVID‐19 has emotionally affected caregivers caring for older people.

First, some studies have indicated that caregivers are afraid of being infected with COVID‐19 during care (Krok‐Schoen et al.,  2021 ; Sarabia‐Cobo et al.,  2021 ; Sun et al.,  2020 ). ‘ Of course I am afraid, I am terrified to think that I have it without knowing, and that I am infecting the residents … we have many positive cases and deaths, and it must be the workers who are bringing it to the nursing home … and that is very scary ’ (Sarabia‐Cobo et al.,  2021 ).

Simultaneously, owing to the shortage of caregivers during COVID‐19, caregivers are under great pressure and prone to burnout. Seven studies have reported that caregivers have had increased workloads (Jia et al.,  2021 ; Lingum et al.,  2021 ; Morley et al.,  2022 ; Murphy et al.,  2022 ; Sarabia‐Cobo et al.,  2021 ; Sun et al.,  2020 ; Sweeney et al.,  2022 ). Because caregivers have been required to pay attention to the physical and mental health of older people and the prevention of infection, the increased workload was inevitable.

Furthermore, in this process, caregivers have had many negative emotions, such as depression or anxiety. ‘ An elderly patient was suffering from wheezing, and it became increasingly severe. None of the treatments could ease her symptoms. She said “help” to me trembling, and I burst into tears ’ (Jia et al.,  2021 ). ‘ Her fear, sadness and loneliness, very tangible and strongly present, mimicking depression ’ (Sizoo et al.,  2020 ).

Finally, some caregivers have had no spare time to address their emotions, thus leading to emotional exhaustion. ‘ I take anxiolytics when I go to work, I need to be calm, I am not ashamed to say it … and to sleep too, I have insomnia, I haver never had it before, if I am not well, I will not be able to take good care of myself … and now we cannot fail, we cannot ’ (Sarabia‐Cobo et al.,  2021 ).

• Synthesized Finding 4: Caregivers display preferences in their learning needs.

This synthesized finding was underpinned by 22 extracted findings and subdivided into 4 categories: ‘optimization technique’, ‘different work and self‐care’, ‘communication skills’ and ‘emotional support’.

Caregivers have been required to add new skills and improve their technical proficiency during COVID‐19. Their roles have changed, because many caregivers caring for older people have had to work in emergency departments or accommodate nucleic acid testing for COVID‐19. ‘ We created a new service, so the frailty home treatment service, where we would be looking after almost like a virtual ward of poorly people in the community … .’ ‘ I hope the recommendation will not just be about creating roles. It's about all of those pillars in terms of research, leadership, clinical expertise, and education, to grow what we need for people, rather than the roles ’ (Morley et al.,  2022 ).

At the beginning of the pandemic, they felt caught off guard because they lacked relevant knowledge. They required more knowledge or self‐care (Sun et al.,  2020 ). However, they now have more knowledge about COVID‐19 than they did at the beginning of the pandemic and, as such, prefer to acquire other more advanced knowledge (Morley et al.,  2022 ).

Furthermore, caregivers have indicated learning needs for their communication with patients, medical staff and managers. ‘ Timely, honest and consistent communication between managers, staff, residents and families throughout the pandemic experience is essential ’ (Sweeney et al.,  2022 ). ‘ Some of the critical patients were not able to communicate, so we could not explain treatment plans to them. They could only accept what we offered ’ (Jia et al.,  2021 ). Studies have shown that during the pandemic, attention must be paid to the communication between physicians and nurses (Ter Brugge et al.,  2022 ).

In addition, because the caregivers in Synthesized Finding 3 had negative emotions, they also wanted to learn or helped with emotional support (Jia et al.,  2021 ). ‘ There was a patient who refused to cooperate and ate little, because of the loss of his family. (N1) I saw the panic and fear in their eyes when I was keeping a distance from them ’ (Jia et al.,  2021 ). ‘ It (COVID‐19) has depleted my energy more than my work typically does ’ (Krok‐Schoen et al.,  2021 ).

• Synthesized Finding 5: Difficulties in management.

This synthesized finding was underpinned by 33 extracted findings and subdivided into 4 categories: ‘difficulties brought by the government’, ‘financial strain’, ‘manager's competence’ and ‘the sense of danger inherent in the nature of the job’.

First, some have expressed anger regarding the slow governmental response in their sector: ‘ ineffective/slow implementation of recognized infection control measures by government and residential service sectoral management ’ (Sweeney et al.,  2022 ). ‘ The US federal government response has been a complete disaster in terms of rapid testing and securing adequate PPE ’ (Krok‐Schoen et al.,  2021 ). Caregivers have cited feelings of abandonment by the government and the wider health care sector. ‘ Governments have failed … there has been no foresight, we are abandoned, exhausted … we fight alone ’ (Sarabia‐Cobo et al.,  2021 ). ‘ Government says if nurses die due to coronavirus, their families will get Rs. 700,000. But … what do our families get? Nothing! ’ (Bilal et al.,  2020 ).

Some caregivers have expressed financial strain: ‘ the issue with that was when the Government announced they would provide PPE equipment free of charge to all care homes and surgeries and whatever, which was fine but what they were doing was they were intercepting stock that we would have normally purchased from our suppliers. So then our supplier was saying we can't send it out because we've got to give it to the Government. And so our options for buying stuff then was quite limited ’ (Marshall et al.,  2021 ).

Furthermore, some caregivers have questioned their managers' competence. ‘ A lack of support from operational managers and physicians, a lack of administration support ’ (Morley et al.,  2022 ). ‘ But they rejected my leave request and told that if I don't show up, they will fire me ’ (Bilal et al.,  2020 ). ‘ Respondents highlighted—poor management and leadership ’ (Sweeney et al.,  2022 ). ‘ They facilitated us by providing the protective equipment. But that's all. They didn't do anything like increasing wages or reducing duty hours ’ (Bilal et al.,  2020 ).

Furthermore, a sense of danger is inherent in the nature of the job. During nursing of patients with COVID‐19, inequality has often been experienced by nurses, mainly unequal exposure to infectious environments and role ambiguity between physicians and nurses. Geriatric nurses have additional duties such as turning bed‐ridden patients and feeding patients who cannot take care of themselves (Krok‐Schoen et al.,  2021 ). ‘ We frequently needed to deal with patients, which increased the chance of infection, but doctors spent much less time in the ward ’ (Jia et al.,  2021 ).

• Synthesized Finding 6: Affirmation of self‐worth.

This synthesized finding was underpinned by 15 extracted findings and subdivided into 2 categories: ‘professional pride and sense of responsibilities’ and ‘trust in colleagues, managers and patients’. Seven studies have reported that caregivers express professional pride and a sense of duty (Bilal et al.,  2020 ; Castaldo et al.,  2022 ; Krok‐Schoen et al.,  2021 ; Lingum et al.,  2021 ; Morley et al.,  2022 ; Sarabia‐Cobo et al.,  2021 ; Sun et al.,  2020 ). ‘ The people we serve; and, those we feel a great sense of responsibility for … ’ (Lingum et al.,  2021 ). Many caregivers have managed to maintain joy despite the negative emotions of caring for older people during the COVID‐19 pandemic. However, several cases of a low sense of responsibility in nursing services were identified. ‘ Some nurses were worried about being infected, so they secretly reduced the frequency of helping patients turn over and rubbing their backs ’ (Jia et al.,  2021 ).

Furthermore, caregivers trust in colleagues, managers and patients. ‘ Everyone is very welcoming and friendly. Experienced colleagues will take the initiative to teach me. I also take the initiative to teach new colleagues ’ (Sun et al.,  2020 ).

3.5. ConQual summary of findings

ConQual ratings were awarded to each synthesized discovery to rate their confidence (Table  5 ) (Munn et al.,  2014 ). One synthesized finding had a high grade, three had a moderate grade and two had a low grade.

4. DISCUSSION

The objective of this qualitative systematic review was to explore caregivers' experiences and perspectives in caring for older people during the COVID‐19 pandemic. At present, no prior articles have been completely consistent with the research methods and themes of this study. The 13 articles selected for meta‐synthesis resulted in 141 findings that were summarized into 20 categories and yielded 6 synthesized findings.

Evidence has suggested that caregivers protect older people against COVID‐19 pandemic through visitor restrictions, advance care planning, and virtual technology and telemedicine. Many quantitative studies on COVID‐19 have reported that testing and vaccines are the most important means to prevent COVID‐19 (Fiolet et al.,  2022 ; Hyams et al.,  2021 ; Soiza et al.,  2021 ). Interestingly, qualitative research on caregivers' care of older people during the COVID‐19 pandemic has rarely described testing and vaccines directly.

Second, evidence suggested that caregivers are concerned about older people's mental and physical health. Because of the visitor restrictions in Synthesized Finding 1 and other reasons, older hospitalized patients have had difficulties in seeing their relatives and friends, and caregivers have been very worried about the psychological condition of these people. Many countries have enacted rigorous pandemic control procedures preventing visits to healthy older people. Older people may be prone to loneliness and sadness because of a lack of proficiency in using virtual communication (Nielsen et al.,  2021 ). Caregivers of older people should focus more on their mental health while maintaining careful surveillance. Furthermore, COVID‐19 increases caregivers' workload. These results are similar to those of Gray et al. ( 2021 ). Furthermore, caregivers arrange hospice care for dying older people.

Most articles in this review showed that caregivers in different countries had various emotions and thoughts. This finding coincides with recent quantitative research (Dragioti et al.,  2022 ) supporting that health care staff have shown negative emotions during the COVID‐19 pandemic, with symptoms of anxiety, depression and insomnia. Our research focused on refining the real‐world experience of caregivers. According to a study (Dragioti et al.,  2022 ), nurses caring for patients with COVID‐19 have more chronic fatigue, poor quality of care, reduced work satisfaction and greater intention to leave their organization than without COVID‐19. Consequently, managers should provide wellness resources to caregivers during the pandemic as part of a long‐term retention strategy.

This systematic review regarding caregivers indicated preferences in their learning needs consistent with past reviews (Gray et al.,  2021 ), which have described the limited knowledge of caregivers in senior care during the COVID‐19 pandemic. A related prior review (Gray et al.,  2021 ) of COVID‐19 nursing home care has concluded that, at the onset of the pandemic, little was known about the novel coronavirus, including how to control it or how to properly protect against it. Staff reported feeling underprepared and lacking in skills and knowledge. However, this review found caregivers to have the need of optimization technique, self‐care and communication skills and emotional support in COVID‐19 care, although caregivers' knowledge has improved since the beginning of COVID‐19 pandemic, particularly in prevention and detection of COVID‐19. This study found that caregivers have significantly changed in that, after more than a year, they have gained more comprehensive knowledge of the new coronavirus, whereas they were caught off guard at the beginning of the COVID‐19 pandemic. Moreover, many managers and researchers have formulated more detailed guidance to help caregivers better serve older people. In contrast, caregivers are increasingly realizing the value of virtual technologies and the need for more personalized learning. This finding coincides with the research of Rose et al. ( 2021 ). However, virtual learning can also be a challenge for older adults (Birkhoff et al.,  2021 ). Furthermore, according to a related study (Song et al.,  2021 ), emotional labour can lead to caregiver exhaustion and decreased attendance. Therefore, caregivers need more emotional support, and managers should pay attention to this phenomenon. Additionally, caregivers should be trained in hospice‐associated expertise.

The management difficulties summarized in this study had not been discovered in previous similar investigations. Evidence suggests that the government brought a sense of crisis to caregivers. This view coincides with the research of Gray et al. ( 2021 ). Caregivers had a sense of abandonment by organizations and/or their governments. Similarly, we found that most caregivers complained that the government did not provide materials and formulate policies in a timely manner, thus placing them in a very dangerous situation. In contrast, several governments have implemented liberal policies in response to the pandemic's progress, taking into account the effects of economic and social difficulties. The present lockdown approach is more relaxed than those at the start of the pandemic. Although this policy may lead to many older people feeling less lonely, it places older people, the most vulnerable population group, at a much higher risk of infection and death. Therefore, the government's actions have increased the pressure on, and danger to, caregivers. Caregivers have complained of managerial incompetence (Krok‐Schoen et al.,  2021 ; Marshall et al.,  2021 ; Morley et al.,  2022 ; Sarabia‐Cobo et al.,  2021 ). Therefore, managers should pay attention to caregivers and develop guidance. Finally, caregivers sense danger due to the nature of the job. According to the hierarchy of needs theory (Liu et al.,  2022 ), caregivers' safety needs are not being met. The nature of their work places caregivers in danger of infection. Therefore, during the pandemic, they have been prone to doubting their career choices or even leaving their jobs for external reasons, such as the government, managers and the nature of their work (Bilal et al.,  2020 ; Jones et al.,  2021 ).

Although caregivers have had a sceptical mentality about career choice during COVID‐19, many caregivers have realized their value. According to the hierarchy of needs theory (Liu et al.,  2022 ), managers should consider the level of self‐actualization in the hierarchy of needs of employees. The results reported by Curtin et al. ( 2022 ) are also similar to those of this review.

5. STRENGTHS AND LIMITATIONS

This is the first qualitative systematic review of caregivers' experiences and perspectives in caring for older people during the COVID‐19 pandemic. Our article integrates the relevant experiences and perceptions of caregivers caring for older adults during the pandemic and provides insights into the underlying reasons for these experiences and perceptions. In this study, compared with prior studies, the quality and reliability of the included literature are better, and the publication years are more recent. To ensure the trustworthiness of this review, the research process involved multiple independent reviewers and ConQual scores. Throughout, the authors' potential influences on the research were duly considered. Interestingly, the first three authors are all master's degree students in relevant fields who have yet to begin working. Therefore, they were able to undertake the review with as little personal work experience as possible, while having a solid understanding of senior care. A major limitation was the exclusion of non‐English articles. Although most studies included in this article were qualitative studies, two mixed studies were included. Extracting fragments of qualitative research from mixed‐type research might have skewed the results of the article. To discover the experience of caregivers providing senior care, this study included some older patients' experiences of being cared for, thus potentially skewing the results.

6. CONCLUSION

This review synthesized existing evidence and explored caregivers' experiences and perspectives on caring for older people during the COVID‐19 pandemic. The results of a qualitative systematic review showed that caregivers' emotions, cognitions and knowledge influence all affected the quality of caregivers' senior care services during the pandemic. As COVID‐19 evolves, the feelings and thoughts of caregivers are changing, thus prompting managers to pay more attention to the stress and emotional experience of caregivers providing senior care. As a result of this study, organizational leaders and policymakers may become more aware of the need to support better management and geriatric care guidelines.

7. IMPLICATIONS FOR NURSING MANAGEMENT

This review emphasized the importance of management and providing support to caregivers during COVID‐19. First, for caregivers caring for older people, the implementation and formulation of prevention and management plans require the action of managers. Second, during the COVID‐19 pandemic, the workload of caregivers has increased, thus requiring better scheduling by managers. Third, managers should consider the negative emotions of caregivers and prevent negative emotions from affecting their work. Fourth, caregivers have learning needs, and managers can provide learning resources in their learning sessions. Fifth, some caregivers will doubt their career choice during the COVID‐19 pandemic, for reasons such as difficulties brought by the government and financial strain. It is necessary to improve the management competence of manager. Managers should formulate timely and effective management strategies and be considerate of caregivers. Finally, according to Maslow's hierarchy of needs theory, managers should ensure the personal safety of caregivers, respect them and find their personal value fulfilled.

This report offers an overview of experiences among caregivers caring for older people during the COVID‐19 pandemic. We discovered through a literature analysis that the experience of caregivers has changed as the pandemic has progressed. The findings serve as a reminder to relevant managers and policymakers to take measures in accordance with the passage of time and local conditions. Furthermore, during the pandemic, geriatric caregivers have appreciated advance care planning. The next stage in our research will examine directions in advance care planning and hospice care for older people during the COVID‐19 pandemic. In addition, virtual technology has gained attention during the pandemic, and many practitioners believe in its future potential. Our team also expects to determine the needs and challenges of older people in this regard. Because older people may have issues with technical learning, technology must be more innovative to be applicable to a larger number of older people. Finally, medical staff caring for older people perform extensive emotional labour, and we hope to broaden the current research by examining their deeper emotional labour experiences.

CONFLICT OF INTEREST

The authors declare no conflict of interest.

ETHICS APPROVAL

Not applicable. This is a qualitative systematic review work from published literature and formal consent is not required. ( https://www.crd.york.ac.uk/prospero/#recordDetails ).

Zhang, H. , Wu, Y. , Wang, N. , Sun, X. , Wang, Y. , & Zhang, Y. (2022). Caregivers' experiences and perspectives on caring for the elderly during the COVID‐19 pandemic: A qualitative systematic review . Journal of Nursing Management , 30 ( 8 ), 3972–3995. 10.1111/jonm.13859 [ PMC free article ] [ PubMed ] [ CrossRef ] [ Google Scholar ]

Funding information The authors of the study received funding from the National Natural Science Foundation of China (71704084) and Postgraduate Research & Practice Innovation Program of Jiangsu Province (SJCX22_0701).

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• Open access
• Published: 02 October 2024

Social determinants of unmet need for primary care: a systematic review

• Feben W. Alemu 1 ,
• Jane Yuan 1 ,
• Seth Kadish 1 ,
• Surim Son 1 ,
• Sunbal Salim Khan 2 ,
• Safa M. Nulla 3 ,
• Kathryn Nicholson 1 ,
• Piotr Wilk 1 , 4 , 5 ,
• Jane S. Thornton 1 , 6   na1 &
• Shehzad Ali   ORCID: orcid.org/0000-0002-8042-3630 1 , 7 , 8 , 9   na1  

Systematic Reviews volume  13 , Article number:  252 ( 2024 ) Cite this article

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Despite primary care being largely free at the point of delivery, many Canadians experience challenges in accessing the services they need. A systematic review was conducted to summarize the evidence on the level of unmet need for primary care in Canada and its social determinants.

MEDLINE, Embase, Cochrane, and Web of Science databases were screened from inception to December 2023 using relevant search terms for primary care and unmet healthcare needs . Quantitative observational studies in the English language that included Canadian adults aged 18 years and older and focused on unmet needs for primary care were included. The risk of bias in the studies was assessed using either the Joanna Briggs Institute (JBI) critical appraisal checklist or the Newcastle–Ottawa Scale. The included studies were synthesized narratively.

Forty-six studies met the inclusion criteria for this review. Of the included studies, 96% were cross-sectional in design and 91% had low risk of bias. The prevalence of unmet need, mostly self-reported, varied between 6.6% and 25.2% in national studies. Social determinants of unmet needs were heterogeneous across studies. Findings suggest that unmet need for primary care is related to having low income, mental health diagnoses, and chronic conditions, and negatively associated with older age, having better-perceived health, and having a family physician.

Conclusions

Universal access to primary care is the founding principle of the Canadian healthcare system. However, we found evidence suggesting that the extent to which primary care needs are met is influenced by social determinants of health. Further research is needed to improve our understanding of the mechanisms of unmet primary care needs in Canada.

Systematic review registration

PROSPERO CRD42021285074.

Peer Review reports

Introduction

The Canadian healthcare system was founded on the principle of universal coverage and is a source of national pride [ 1 ]. This makes primary care services free at the point of care. Primary healthcare is an entry point into the healthcare system. Unfettered access to primary care services allows for continuity of care, reduces morbidity, hospitalizations, and mortality, and improves the efficiency of the healthcare system [ 2 , 3 , 4 ]. Individuals who forego or delay medical care can exacerbate existing health problems which may lead to an increase in the use of healthcare services at a later point in time [ 3 , 5 ]. This, in turn, can result in an increase in healthcare spending [ 3 , 6 , 7 ].

Social determinants of health, i.e., non-medical factors that affect access to care and health outcomes, relate to conditions in which people are born, grow, work, connect, live, and age [ 8 , 9 ]. These determinants include factors such as income, education, employment, social and physical environments, and cultural contexts [ 8 , 9 ]. Social determinants of health can significantly influence an individual's health outcomes and access to healthcare services by affecting individuals' ability to seek, receive, and adhere to medical advice and treatment [ 8 , 9 , 10 , 11 ]. For instance, racial minorities and materially deprived households may face structural barriers and social bias in healthcare, such as intentional or unintentional discrimination, lack of culturally appropriate care, or geographical barriers that prevent them from receiving timely and appropriate healthcare [ 12 , 13 , 14 ]. These non-health determinants reinforce social disadvantages and vulnerability [ 15 ]. Understanding these social determinants is crucial for addressing disparities in healthcare access and outcomes [ 10 , 11 ].

Despite the promise of universal, affordable coverage, many Canadians experience barriers in accessing healthcare services, resulting in unmet healthcare needs. A 2021 Commonwealth Fund Report ranked the Canadian healthcare system 9th out of 11 high-income countries on the overall access to care domain, which measures affordability and timeliness [ 16 ]. An unmet need can arise due to inadequate or inappropriate access to treatment for a health issue [ 17 ] and can be expressed in relation to physical [ 17 , 18 , 19 , 20 ] or mental healthcare services [ 12 , 21 , 22 ]. Timeliness of care has been a primary healthcare concern for the public as well as healthcare professionals for the past 20 years [ 23 ], particularly for older Canadian adults [ 24 ]. Unmet healthcare needs tend to be greater among socially marginalized groups, such as racial minorities and low-income groups [ 25 ]. Other social determinants of health associated with unmet needs include female sex [ 26 ] and poor health status [ 27 ].

Current reviews examining unmet healthcare needs are largely based on literature from the United States and Europe and have focused on patients with specific health conditions [ 28 , 29 ]. Similarly, recent Canadian reviews on unmet needs have been on cancer care [ 30 ], home care [ 31 ], and immigrants [ 32 ]. Given that primary care is the entry point to the healthcare system, the identification of barriers to access is crucial to improve access. Several Canadian studies have explored the level of unmet primary care needs and the associated social determinants. However, there is no comprehensive summary of the literature. In this study, we use a broad definition of primary care, which encompasses services delivered by primary care clinics or community care services. The aim of this systematic review is to review and appraise the evidence on unmet needs for primary healthcare within the Canadian context.

The protocol for this systematic review was preregistered on the international database of prospectively registered systematic reviews with a health-related outcome (PROSPERO; CRD: 42021285074). The review is reported in adherence with the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analysis) guidelines (see Additional file 1).

Information sources and search strategy

MEDLINE, Embase, Cochrane, and Web of Science databases were searched from inception to December 2023. The search strategy was developed in consultation with a research librarian. Terms and keywords relating to Unmet Need and Primary Care were used to identify relevant studies: unmet need AND (family medicine OR family practice OR family doctor OR family physician OR general practice OR general practitioner OR primary care OR primary healthcare). Additionally, forward and backward citation searches were performed on Web of Science. The full search strategy is provided in Additional file 2.

Eligibility criteria

The eligibility criteria were defined based on the following PICOS framework: Population (P): adults aged 18 years or older; Intervention (I): any intervention or exposure; Comparator (C): any comparator or control; Outcome (O): unmet need for primary care; Study Design (S): quantitative observational study design. Only studies with Canadian data were included. These studies could be national (or international if other countries were included besides Canada), provincial, or local. For this review, a broad definition of primary care was adopted, which includes community care services that may not be delivered by primary care clinics, allowing for an assessment of unmet needs in a broader context. Additionally, self-perceived unmet need was defined as not receiving primary healthcare services when needed.

Studies were excluded if they focused on secondary care or only included individuals < 18 years of age. In addition, non-English language and non-Canadian studies (if Canada was not included) were excluded at the full-text screening stage. Six reviewers (FWA, JY, SK, SSK, SMN, and SS) independently screened all titles, abstracts, and full texts. Each study was screened by two authors. Disagreements were resolved through consensus.

Data extraction and synthesis

A data extraction form was developed and pilot-tested for data abstraction. Author information, year of publication, geography, study objectives, study design, sample size, study population characteristics, level of unmet need, and the quantified association of predictors of unmet need were collected. The data extraction was performed by six reviewers (FWA, JY, SK, SSK, SMN, and SS) and validated by two reviewers (FWA and SS). Any discrepancies were resolved through consensus.

Due to the heterogeneity of studies, a meta-analysis was deemed not appropriate. A narrative synthesis was used to summarize the data extracted from the included studies. For studies that reported both unadjusted and adjusted effect estimates, only the adjusted effect estimates were extracted.

Risk of bias assessment

The risk of bias was assessed using separate tools for cross-sectional and cohort studies [ 33 ]. For cross-sectional studies, the Joanna Briggs Institute (JBI) critical appraisal checklist for analytical cross-sectional studies was used [ 34 ]. For cohort studies, the Newcastle–Ottawa Scale for cohort studies was used [ 35 ]. Discrepancies in risk of bias assessment were resolved through consensus.

Results of the search

A total of 11,663 abstracts were initially identified from the database searches (Fig.  1 ). After deduplication, 8586 studies underwent title and abstract screening, 256 underwent full-text screening review and 43 were found to be relevant. Studies were excluded after full-text screening for the following reasons: ineligible outcomes ( n  = 101), ineligible study design ( n  = 44), ineligible setting ( n  = 33), abstract-only study ( n  = 31), ineligible patient population ( n  = 3) and full text not in English ( n  = 2). Five additional studies were identified through citation searching; however, one was excluded due to an ineligible outcome. This report is focused on a total of 46 Canadian studies (Additional file 3) examining unmet primary healthcare needs.

PRISMA flow diagram

Description of the included studies

A detailed description of the included studies is presented in Table  1 . Of the included studies, 32 focused on unmet needs in general healthcare [ 13 , 17 , 18 , 19 , 20 , 27 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 44 , 45 , 46 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 , 59 , 60 , 61 ], and 11 focused on unmet needs in mental healthcare [ 12 , 21 , 22 , 26 , 62 , 63 , 64 , 65 , 66 , 67 , 68 ]. Three studies focused on unmet needs in both general and mental healthcare [ 69 , 70 , 71 ]. Two of the included studies were longitudinal in design [ 36 , 63 ] while the rest were cross-sectional. The studies were conducted between 1998 and 2023, where sample sizes ranged from 320 in a community-based study conducted in Edmonton, Alberta [ 22 ] to over 400,000 in a study that pooled multiple national-level population-based surveys [ 42 ]. There were differences in the data sources used across the included studies. The most common data sources were the Canadian Community Health Survey (CCHS, n  = 26), the Health and Housing in Transition study (HHiT, n  = 3), and the Canadian Longitudinal Study on Aging (CLSA, n  = 2). The remaining sources were used in one study each. The minimum average age within the study was 38.2 years, and the maximum average age was 67.7 years. Sex distribution varied vastly with female participants making up 12.4% to 100% of study participants. All provinces and territories of Canada were included in 5 studies, 20 included all provinces but not the territories, 6 were conducted in Ontario, 4 in Quebec, 4 in British Columbia, 3 in Ontario and British Columbia, 1 in Alberta, 1 in Ontario and New Brunswick, and 1 in Nova Scotia, New Brunswick, Prince Edward Island, and Newfoundland and Labrador. One study included participants from Ontario, Manitoba, Newfoundland and Labrador, Alberta, New Brunswick, Nova Scotia, and the Northwest Territories.

All included studies defined unmet need as the perceived need for healthcare by study participants that were not received. The recall period for assessing unmet needs ranged from 6 to 12 months; however, it was not specified in three studies [ 43 , 44 , 60 ]. Twenty studies (43%) utilized Andersen’s Behavioral Model of Health Services Use [ 72 ], a model that asserts that an individual’s use of the healthcare system is partly determined by factors that predispose and enable them to seek or avoid care and their need for healthcare services, to inform their selection of predictors of unmet need [ 17 , 21 , 27 , 38 , 39 , 43 , 45 , 46 , 50 , 51 , 53 , 54 , 57 , 58 , 60 , 62 , 65 , 68 , 69 , 70 ].

The five studies that included participants from all provinces and territories in Canada focused on general unmet healthcare needs (Table  1 ). The proportion of participants reporting unmet needs in these studies ranged from 10.4 [ 58 ] to 12.8% [ 49 ] as each study used data from different study periods. The 20 studies that reported the rate of unmet needs across all 10 provinces (but not the territories) differed in the data sources they used and study periods they covered. The level of unmet need for general healthcare in these studies ranged from 6.6 [ 19 ] to 25.2% [ 47 ], while the level of unmet need for mental healthcare ranged from 2.4 [ 66 ] to 50.3% [ 66 ].

Sixteen studies reported the rate of unmet need for general healthcare at the provincial or territorial level. The level of unmet needs ranged from 12.0 to 24.7% in British Columbia [ 40 , 46 , 52 , 69 ] 8.0 to 23.6% in Ontario [ 13 , 27 , 53 , 60 ], and 18.4% to 52.3% in Quebec [ 20 , 41 , 43 ]. Three studies reported an unmet need proportion of 37.7% in Ontario and British Columbia [ 18 , 36 , 71 ], one reported a proportion of 10.0% in Ontario and New Brunswick [ 59 ] and another one reported a proportion of 3.5% across six provinces and the Northwest Territories [ 57 ].

Seven studies reported an unmet need for mental healthcare at the provincial level. These were 47.6% in Alberta [ 22 ], 39.9% in Quebec [ 63 ], 23.5% in Ontario and British Columbia [ 71 ], 60.0% in Nova Scotia, New Brunswick, Prince Edward Island, and Newfoundland [ 68 ], a range of 4.5% to 68.3% in Ontario [ 12 , 26 ] and a range of 10.4% to 16.5% in women residing in British Columbia. MacLean et al. (2021) only reported the rate of general unmet needs among veterans and the general population, stratified by sex [ 37 ]. Female veterans had higher rates of unmet needs relative to their general population comparators (16.2% vs. 13.4%). Male veterans and their comparators both had an unmet need rate of 9.9%.

A summary of the associations reported in the included studies is presented in Table S1 (Additional file 4). The most frequently investigated factors were sex/gender ( n  = 36), age ( n  = 34), education ( n  = 30), and income ( n  = 29). A significant proportion of these studies found notable associations between health conditions and unmet needs, including chronic conditions (17/21), specific health conditions (14/15), mental health diagnoses (20/21), and perceived health (22/26). Likewise, 13 out of 15 studies found significant associations between having a primary care provider and unmet needs. Age was the most frequently reported significant variable, with 24 out of 34 studies identifying significant associations. Other variables showing significant associations included province (7/8), education (19/30), income (20/29), substance use (4/6), and social support (8/12). In contrast, variables such as immigration status (10/14) and health insurance (5/7) largely did not show significant associations. For the remaining variables, the studies did not consistently show significant associations in either direction, indicating a lack of a clear trend. The outcomes from each included study are presented in Tables S2, S3, and S4 (Additional file 5).

Geographical factors

Nineteen studies evaluated the effect of geographical factors on unmet needs (Table S2). Ten studies examined the difference in unmet needs between urban and rural residents, with seven finding no significant differences [ 17 , 19 , 38 , 39 , 46 , 54 , 68 ]. Three studies found that rural residence was associated with lower odds of unmet needs with estimates ranging from OR = 0.80 (95% CI 0.72, 0.90) to OR = 0.88 (95% CI 0.78, 0.99) [ 45 , 51 , 64 ].

Eight studies investigated the relationship between odds of unmet needs and province of residence, one of which did not find a significant association [ 68 ]. The remaining studies found a significant association, however, there was variation in the estimates reported [ 39 , 45 , 48 , 51 , 55 , 59 , 65 ]. Five studies investigated unmet needs at the level of Canadian cities [ 16 , 36 , 71 ] evaluated unmet needs across three cities (Ottawa, Toronto, and Vancouver), and found no significant differences [ 18 , 36 , 71 ]. Law et al. (2005) explored the effect of the neighborhood on the healthcare needs of residents of Hamilton, Ontario, and found that residents of the Downtown Core were 2.19 times more likely to report having unmet needs compared to those in the Southwest Mountain area [ 27 ]. Shakeel et al. (2020) found that individuals living in areas with > 50,000 residents had lower odds of unmet physical healthcare needs (OR = 0.76, 95% CI 0.62, 0.93), while no significant association was found for emotional needs [ 44 ].

Socioeconomic and demographic factors

The relationship between unmet needs and demographic and socioeconomic factors was evaluated in 43 and 36 studies, respectively (Tables S2 and S3). These included age ( n  = 39), sex and gender ( n  = 40), race and ethnicity ( n  = 17), marital status ( n  = 21), immigration status ( n  = 20) education ( n  = 31), income ( n  = 31), and employment status ( n  = 16).

Thirty-nine studies considered age a determinant of unmet needs. Ten of these did not find a significant association [ 18 , 22 , 36 , 40 , 43 , 44 , 52 , 59 , 60 , 71 ] and five did not report the estimates [ 39 , 41 , 50 , 53 , 66 ]. Twenty-one studies found that older age was associated with lower odds of unmet need relative to younger age, with odds ratios ranging from 0.13 to 0.98 [ 12 , 17 , 19 , 20 , 21 , 26 , 27 , 38 , 42 , 45 , 46 , 48 , 49 , 51 , 54 , 55 , 64 , 65 , 67 , 69 , 70 ], and one study found younger age to be associated with higher risk of unmet need [ 47 ]. In contrast, Starkes et al. (2005) found that middle-aged and older adults had higher odds of unmet needs relative to young adults [ 68 ]. Awe et al. (2019) found individuals aged 18 to 49 years old had higher odds of unmet healthcare needs when compared to those aged 12 to 17 years old (18–34 years OR = 1.74, 95% CI 1.17, 2.59; 35–49 years OR = 1.54, 95% CI 1.03, 2.30) [ 58 ].

The effect of sex and gender was evaluated in 40 studies. Sixteen of these studies did not find a significant association [ 18 , 19 , 21 , 22 , 27 , 36 , 40 , 43 , 44 , 47 , 48 , 60 , 61 , 67 , 68 , 71 ] while four studies did not report estimates [ 39 , 41 , 50 , 66 ]. Female sex was associated with higher odds of unmet need in 18 studies, with estimates ranging from 1.03 to 1.65 [ 20 , 26 , 38 , 42 , 45 , 46 , 49 , 51 , 52 , 54 , 55 , 56 , 58 , 59 , 64 , 65 , 70 ]. However, one study found that female sex was associated with lower odds of unmet need (OR = 0.990, 95% CI 0.990, 0.990) [ 17 ]. A study by Steele et al. (2017) assessed the association between unmet need and gender and sexual identity but their findings were not statistically significant [ 12 ].

The search found 17 studies that assessed the relationship between unmet healthcare needs and race and ethnicity, 10 of which did not find a significant association [ 12 , 22 , 36 , 45 , 46 , 47 , 51 , 65 , 67 , 71 ]. Identifying as East Asian, West Asian, a visible minority, or other was associated with lower odds of unmet need in three studies, with estimates ranging from 0.28 to 0.98 [ 17 , 18 , 61 ]. Kasman and Badley (2004) found white racial/ethnic identity was associated with higher odds of unmet need relative to visible minority (OR = 1.32, 99% CI 1.18, 1.49) [ 49 ]. Two studies found Indigenous status was associated with higher odds of unmet need [ 19 , 54 ], while another considered Indigenous status but did not report an estimate [ 50 ].

Twenty-one studies examined the relationship between unmet needs and marital status, ten of which reported nonsignificant findings [ 21 , 44 , 45 , 47 , 51 , 52 , 59 , 60 , 65 , 68 ] and two did not report an estimate [ 39 , 50 ]. Five studies found that, compared to individuals who were married or in a common law relationship, those who were divorced, separated, or widowed had higher odds of unmet needs with estimates ranging from 1.12 to 1.48 [ 17 , 19 , 42 , 55 , 58 ]. Two studies found that those who were single or never married had lower odds of unmet needs [ 26 , 54 ]. Another study found being widowed was associated with lower odds of unmet needs whereas being divorced or living in common law was associated with higher odds [ 61 ]. In contrast, Drapeau et al. (2019) found individuals living with a partner had 41% lower odds of having unmet need [ 64 ].

Twenty studies evaluated the association between immigration status and unmet needs. Lin and Fang (2023) found that racialized immigrants had higher odds of unmet needs compared to Canadian-born whites [ 57 ]. Three studies found that immigrants had 12–40% lower odds of unmet healthcare needs [ 17 , 38 , 64 ]. Time since immigration and immigration class were not associated with the odds of having unmet need in two studies [ 43 , 59 ] however, one study found an inverse association between reporting unmet needs and time since immigration [ 54 ]. Three studies did not report estimates [ 39 , 50 , 53 ] and the remaining studies did not find a significant association [ 18 , 19 , 21 , 44 , 46 , 47 , 55 , 61 , 65 , 67 ].

Level of education attainment was not significantly associated with unmet needs in 11 studies [ 19 , 21 , 27 , 44 , 47 , 48 , 52 , 61 , 63 , 64 , 67 ], and the estimate was not reported in one [ 53 ]. Higher education attainment was associated with higher odds of unmet need in 16 studies, with estimates ranging from 1.03 to 1.85 [ 17 , 18 , 20 , 38 , 39 , 42 , 43 , 45 , 46 , 49 , 51 , 55 , 58 , 59 , 65 , 70 ] However, three studies found higher odds of unmet need in those with lower education attainment [ 54 , 68 , 69 ].

Thirty-one studies assessed the effect of income on unmet needs by considering total household income as well as relative income quantiles/quintiles. Nine studies found that income was not associated with the odds of having unmet needs [ 26 , 27 , 44 , 48 , 52 , 54 , 64 , 67 , 68 ] while one study did not report the odds ratio estimate [ 53 ] Seventeen studies reported individuals with lower income had higher odds of unmet need, with odds ratios ranging from 1.01 to 9.71 [ 17 , 19 , 21 , 38 , 42 , 45 , 46 , 49 , 51 , 55 , 58 , 59 , 60 , 61 , 63 , 65 , 70 ] Vyas et al. (2020) found those with income < $60,000 had a higher risk of having unmet need, with estimates ranging from 1.44 to 1.51 [ 47 ]. One study found individuals in the middle-income quintile had lower odds of unmet need relative to those in the highest quintile (OR = 0.825, p  = 0.05) [ 39 ]. Two studies found low socioeconomic status, evaluated by considering employment status, source of income, total household income, number of individuals in the household, amount of income spent on housing [ 12 ], and average or poor perceived wealth status [ 20 ] were associated with lower odds of unmet need.

The search found 16 studies that assessed the relationship between unmet needs and employment, seven of which found no significant association [ 36 , 43 , 44 , 48 , 52 , 63 , 71 ]. Six studies found that being unemployed was associated with lower odds of having unmet needs, with estimates ranging from 0.60 to 0.85 [ 18 , 19 , 20 , 45 , 51 , 55 ]. One study found that being employed was associated with lower odds of unmet need (OR = 0.93, p  < 0.001) [ 38 ]. Mixed results were found for being self-employed, with one study including all 10 provinces suggesting a 32% reduction in odds of unmet need [ 64 ] and another study conducted in Ontario reporting a 1% increase for self-employed [ 59 ].

Life circumstances

The association between unmet needs and life circumstances was evaluated in 12 studies (Table S4). These include housing status ( n  = 8), incarceration ( n  = 3), adverse childhood experiences ( n  = 1), discriminatory events ( n  = 2), food insecurity ( n  = 2), living arrangements (3), and stress ( n  = 2).

Eight studies evaluated the impact of housing status on having unmet healthcare needs. Being a renter, having moved one or more times in the previous year, and having slept in six or more different places in the past 6 months were not associated with having unmet needs [ 13 , 22 , 52 ]. Having no fixed address, staying in hostels and shelters and homelessness were associated with higher odds of unmet needs with estimates ranging from 1.45 to 2.79 [ 40 , 60 , 71 ]. The lifetime duration of homelessness, however, did not affect the odds of reporting unmet need [ 18 , 36 , 71 ].

One study found that incarceration in the past 12 months was associated with higher odds of unmet need (OR = 1.32, 95% CI 1.04, 1.68) [ 36 ], while two other studies did not find a significant relationship [ 40 , 71 ]. History of two or more adverse childhood experiences was associated with an increase in odds of unmet needs by a factor of 1.28 [ 21 ]. Experiencing discriminatory events was associated with higher odds of unmet need [ 12 , 13 ]. In addition, Indigenous individuals who had been discriminated against by a healthcare provider and did not have access to desired foods (OR = 5.2, 95% CI 1.6, 16.8) [ 13 ] as well as immigrants experiencing food insecurity (OR = 3.73, 95% CI 2.38, 5.87) [ 43 ] had higher odds of unmet need.

Two studies did not find an association between living arrangements and having unmet healthcare needs [ 27 , 60 ]. One study found living with a spouse or a partner was associated with lower odds of unmet need (OR = 0.89, p  < 0.05), while living with a roommate was associated with higher odds (OR = 1.21, p  < 0.05) [ 38 ]. High stress and having experienced a stressful event in the previous 12 months were also associated with higher odds of having unmet healthcare needs with estimates ranging from 1.35 to 1.83 [ 17 , 52 ].

Existing health conditions

The association between unmet needs and health conditions was assessed in 40 studies: chronic conditions ( n  = 21), specific health conditions ( n  = 15), mental health diagnoses ( n  = 21), and perceived health ( n  = 26) (Table S4). Twenty-one studies evaluated the relationship between chronic conditions and having unmet needs. Eleven studies found the presence of one or more chronic conditions was associated with higher odds of unmet healthcare needs [ 17 , 18 , 19 , 20 , 26 , 27 , 48 , 50 , 58 , 65 , 71 ]. The estimates ranged from 1.14 to 1.74. In addition, relative to individuals with one chronic condition, those with two or more [ 45 , 49 , 51 ] and those with three or more [ 36 , 70 ] had higher odds of unmet needs. However, Sunderland and Findlay (2013) found the converse in individuals with two or more chronic physical conditions [ 62 ]. One study did not report an estimate [ 41 ] and the findings in three studies were nonsignificant [ 43 , 44 , 68 ].

Fifteen studies evaluated unmet needs in individuals with specific health conditions. Chronic pain [ 19 , 40 , 48 , 49 ], arthritis [ 39 , 50 , 54 , 57 , 59 ], asthma [ 39 , 42 , 54 , 57 ], cancer [ 39 ], epilepsy [ 42 ], migraine [ 42 ], disability [ 49 ], difficulty performing instrumental activities of daily living, such as cooking and cleaning [ 58 ], and functional impairment [ 70 ] were associated with higher odds of unmet need, whereas emphysema [ 48 ] and having better quality of life [ 18 ] were associated with lower odds. Three studies found individuals with heart disease had higher odds of unmet need [ 39 , 50 , 54 ], while one study found the opposite relationship [ 59 ]. Similarly, one study found diabetes was associated with higher odds of unmet need [ 42 ], while three others found lower odds/probability [ 39 , 50 , 59 ]. Vyas et al. (2020) found that individuals with heart disease (RR = 1.24, 95% CI 1.16 to 1.33) or diabetes (RR = 1.14, 95% CI 1.03 to 1.25) were at higher risk of having unmet need [ 47 ]. One study found that the number of disability days in the past 2 weeks was not associated with having unmet need [ 68 ].

Twenty-one studies investigated the association between mental health diagnoses and odds of having unmet needs, one of which reported nonsignificant estimates [ 18 ]. Having a mental health problem [ 36 , 71 ], general anxiety disorder [ 21 , 56 ], mood or anxiety disorder [ 26 , 40 , 48 , 50 , 57 , 62 , 65 , 66 ], depression [ 12 , 56 ], body dissatisfaction [ 69 ], and experiencing psychological distress [ 19 , 27 , 62 , 67 ] were associated with higher odds of unmet need. The estimates of the odds ratios ranged from 1.09 to 10.53. Individuals with chronic depression had lower odds of unmet need relative to those with acute depression (OR = 0.45, 95% CI 0.30, 0.67) [ 68 ] while worsening depression and anxiety symptoms were associated with higher odds of unmet need (OR = 2.75, 95% CI 1.44, 5.26) [ 63 ]. Suicidal ideation was found to be associated with higher odds of unmet need in one study (OR = 1.20, 95% CI 1.03, 1.41) [ 21 ] and associated with lower odds in another (OR = 0.47, 95% CI 0.31, 0.72) [ 68 ]. Drapeau et al. (2019) evaluated change in the level of unmet need for mental healthcare between 2002 and 2012 and found that individuals with major depression or psychological distress had higher odds of unmet need in 2012 (OR = 1.54, 95% CI 1.33, 1.78) [ 64 ].

Twenty-two studies found that individuals with better-perceived health (excellent > very good > good > fair > poor) had lower odds of unmet healthcare needs [ 17 , 18 , 19 , 20 , 26 , 27 , 38 , 39 , 45 , 46 , 47 , 48 , 49 , 51 , 52 , 54 , 55 , 58 , 59 , 65 , 69 , 70 ]. One study did not find a significant association between unmet needs and perceived health [ 68 ] and three studies did not report estimates [ 41 , 50 , 53 ].

Smoking, alcohol, and substance use

The association between unmet need and smoking, alcohol, and substance use was evaluated in 9 studies: smoking ( n  = 3), alcohol ( n  = 2), and substance use ( n  = 6) (Table S4). Two studies found that current smoking status was associated with higher odds of unmet need [ 39 , 54 ], while another found having ever smoked was associated with a lower risk [ 47 ]. Similarly, alcohol use was found to be associated with higher odds of unmet needs in two studies [ 54 , 71 ] Six additional studies assessed the relationship between substance use and having unmet needs, two of which reported nonsignificant findings [ 21 , 40 ]. Problematic substance use [ 36 ] and substance dependence [ 22 , 66 , 67 ] were associated with higher odds of unmet needs. Urbanoski et al. (2007) found that individuals with both a substance disorder and a mood disorder had 40.5 times greater odds of having unmet needs relative to those with neither disorder [ 66 ].

Health service use

The relationship between health service use and having unmet needs was evaluated in 23 studies (Table S3). Thirteen studies found that having a regular healthcare provider was associated with lower odds of having unmet healthcare needs, with estimates ranging from 0.33 to 0.77 [ 18 , 20 , 36 , 38 , 45 , 46 , 48 , 51 , 54 , 57 , 65 , 70 , 71 ]. One study did not find an association between having a regular healthcare provider and having unmet needs [ 63 ], while another one did not report an estimate [ 53 ]. Relative to individuals with both a regular doctor and a regular place of care, those with only a regular place (OR = 1.96, 95% CI 1.58, 2.44) or neither (OR = 1.81, 95% CI 1.18, 2.78) had higher odds of unmet need [ 58 ]. Receiving care at an integrated clinic (OR = 0.14, 95% CI 0.06, 0.34) and a community health center (OR = 0.23, 95% CI 0.10, 0.52) were associated with lower odds of unmet need, while poor treatment at a healthcare facility was associated with higher odds (OR = 5.50, 95% CI 3.59, 8.60) [ 40 ].

Consultation with a general practitioner within the past year [ 19 ] and having three or more consultations were associated with higher odds of unmet needs [ 49 ]. Poor perceived healthcare availability was associated with higher odds of unmet needs (women OR = 1.58, 95% CI 1.09, 2.28; men OR = 1.92, 95% CI 1.23, 2.99) [ 53 ]. One study did not find a significant relationship between gender predominance at a primary healthcare organization and the odds of patients having unmet needs [ 41 ].

Having private or provincial health insurance was not associated with having unmet need [ 18 , 43 , 63 ]. Two studies reported that individuals with prescription drug insurance had higher odds of unmet needs relative to those without one [(OR = 1.22, 95% CI 1.16, 1.28) [ 45 ], (OR = 1.20, 95% CI 1.11, 1.29) [ 51 ]. However, two studies did not find a significant association [ 38 , 39 ].

Other factors

Five studies evaluated the association between language fluency and having unmet needs (Table S3), two of which reported nonsignificant findings [ 43 , 60 ]. Individuals who primarily speak a non-English [ 27 ] or a non-French [ 20 ] language had lower odds of unmet need. However, one study that included all 10 provinces found that French speakers had higher odds of unmet physical and emotional needs [ 44 ].

The search found 12 studies that examined the relationship between social support and having unmet needs (Table S3), four of which reported nonsignificant findings [ 17 , 43 , 46 , 68 ]. Having a strong sense of belonging to a community [ 12 , 21 , 38 , 58 , 65 ], membership in a political, or a national organization [ 52 ], having a source of affection [ 26 ], and having emotional or informational support [ 26 ] were associated with lower odds of unmet need. However, experiencing positive social interactions was associated with higher odds of unmet needs (OR = 1.11, 95% CI 1.03, 1.20) [ 26 ]. Chamberlain et al. [ 70 ] found that individuals who reported loneliness had higher odds of unmet healthcare needs (OR = 1.80, 95% CI 1.64, 1.97) [ 70 ].

Risk of bias in the included studies

The risk of bias (ROB) assessment of the included studies is presented in Table  2 . Based on the JBI tool, 41 of the 44 cross-sectional studies were rated as having low ROB. The three remaining studies were rated as having intermediate ROB [ 37 , 41 , 66 ]. While Urbanoski et al. (2007) identified potential confounders of unmet needs, they failed to adjust for them in their regression analysis [ 66 ]. Pineault et al. (2017) did not clearly define the inclusion criteria [ 41 ], whereas MacLean et al. (2021) did not identify confounding factors, and as a result, did not have strategies to deal with confounding factors or employ the appropriate statistical analysis [ 37 ]. With the exception of Durbin et al. (2014) [ 60 ] and Hyshka et al. (2017) [ 22 ], all the other cross-sectional studies evaluated the outcome through self-reported questionnaires that were not validated. Durbin et al. (2014) identified potential confounding factors but did not state the strategies used to deal with them [ 60 ]. Hence, it was unclear whether the appropriate statistical analysis was performed.

The two longitudinal studies were rated as having low [ 36 ] and intermediate [ 63 ] risk of bias based on the Newcastle–Ottawa Scale. Both studies included a representative exposed cohort that was drawn from the same community as the non-exposed, used structured interviews to ascertain exposure and had an adequate follow-up of the participants. However, Dezetter et al. (2015) did not demonstrate the comparability of the exposed and non-exposed cohorts [ 63 ].

To our knowledge, this is the first systematic review of unmet primary healthcare needs in Canada. The studies included in this review reported prevalence estimates of unmet needs ranging between 3.5% and 68.3%. These variations are likely due to the differences in data sources, geographical coverage, and participant groups. Approximately 45% of the included studies used Andersen’s Behavioral Model of Health Services Use to inform their selection of predictors [ 72 ].

The most frequently investigated predisposing factors were age and sex/gender. A notable trend was observed in relation to age, with older individuals generally experiencing lower odds of unmet primary healthcare needs. This trend varied across provinces, reflecting the diversity of the healthcare systems and policies across the country. Conversely, most studies examining immigration status did not find a significant association with unmet needs. No consistent trends were found in relation to sex/gender, marital status, race/ethnicity, urban/rural residence, or language fluency. Among enabling factors, income and education were most frequently considered, with findings indicating that low income and higher educational attainment were associated with higher odds of unmet needs. Having a regular healthcare provider and social connections were generally associated with lower odds of unmet needs. The most adjusted need-based factors included chronic conditions, perceived health, and mental health diagnoses, with chronic conditions and mental health issues correlating with higher unmet needs, while better-perceived health was linked to lower unmet needs. Other factors such as housing status, substance use, and living arrangements were included in very few studies, making it difficult to draw conclusions on their association with unmet needs.

Social determinants of health often intersect with systemic and structural inequities, contributing to disparities in healthcare access. For instance, individuals with lower income may face barriers to accessing care, including cost-related issues or limited availability of services in their area [ 73 ]. Affluent individuals often leverage their resources and influence to obtain expedited access to healthcare services and additional diagnostic tests. Similarly, those with higher educational attainment might be more aware of healthcare needs but still face barriers to accessing services, indicating a complex interplay between health literacy and access [ 74 , 75 ]. These findings underscore the importance of addressing social determinants of health to improve equity across the dimensions of healthcare access (availability, accessibility, acceptability, affordability, appropriateness, and timeliness) [ 76 , 77 ].

Significant heterogeneity was observed across studies. A meta-analysis requires a certain level of homogeneity among studies to ensure that the combined effect size is meaningful and generalizable. Due to significant heterogeneity observed across the included studies, a meta-analysis was deemed inappropriate. We considered the variability in outcome definition, explanatory variables, population, and study design of the included studies. The measurement of unmet needs (outcome) varied across studies. For instance, in Durbin et al. (2014), social workers and healthcare providers determined the level of unmet healthcare needs [ 60 ], as opposed to self-reported unmet needs investigated in national surveys [ 17 , 21 , 26 , 37 , 38 , 39 , 42 , 45 , 46 , 47 , 49 , 50 , 51 , 58 , 59 , 61 , 62 , 64 , 65 , 66 , 67 ]. While most studies focused on healthcare needs, Ridde et al. (2020) asked respondents about their unmet needs only in relation to having medical insurance [ 43 ]. Similarly, definitions and categorizations of explanatory variables varied across studies, leading to inconsistencies in the measurement of the same construct. For example, age was operationalized as a continuous variable in 10 studies [ 12 , 17 , 22 , 36 , 40 , 43 , 54 , 59 , 60 , 71 ], and a categorical variable in the remaining studies, with different age bands. Similarly, variables such as race/ethnicity, income, and perceived health were categorized differently across studies, making it challenging to meta-analyze reported values. There was variation in the recall interval, with three studies not reporting the time period [ 43 , 44 , 60 ], four using a 6-month period [ 20 , 40 , 41 , 63 ], and the rest using a 12-month period. The study populations also varied, with some studies focusing on specific subgroups or regions, while others adopting a broader approach. For instance, Cammaert (2022) focused on unmet needs in women with disordered eating living in British Columbia [ 69 ]; Jaworsky et al. (2016) focused on homeless and vulnerably housed individuals living in Toronto, Ottawa, or Vancouver [ 36 ]; Reid et al. (2012) compared the level of unmet need in people with epilepsy to that of the general population across the ten provinces [ 42 ]; and Awe et al. (2019) focused on the Canadian general population [ 58 ]. Additionally, there were differences in sampling methods across studies. Studies that used pan-Canadian datasets, such as CCHS, used multistage cluster sampling and random sampling methods, whereas studies that directly recruited participants used methods such as venue-based sampling [ 43 ], convenience sampling [ 40 ], respondent-driven sampling [ 13 ], and street outreach and snowball sampling [ 22 ]. Furthermore, the included studies differed in their analytical methods and statistical reporting. Bataineh et al. (2019) employed linear probability models to report probabilities [ 59 ], Vyas et al. (2020) used log-binomial generalized estimating equations to report risk ratios [ 47 ], and MacLean et al. (2021) focused solely on computing and reporting rates [ 37 ]. Other studies utilized multivariable logistic regressions to report odds ratios. In summary, due to the observed heterogeneity in the studies identified, a meta-analysis was considered inappropriate.

The risk of bias assessment indicated that most studies exhibited low bias, though some showed intermediate bias due to unclear inclusion/exclusion criteria or inappropriate statistical analyses [ 37 , 41 , 66 ]. Moreover, the reliance on self-reported questionnaires in most studies raises concerns about social desirability and recall biases [ 78 ]. All but two of the included studies were cross-sectional in design. Given that the need for healthcare services changes over an individual’s life course, cross-sectional studies may not capture the full extent of factors that impact unmet needs. Additionally, only five studies included participants from across Canada, limiting the generalizability of the findings to the entire Canadian population. Future studies on unmet needs, and by extension future population-based surveys, should aim to include individuals from across Canada, particularly the Territories.

Implications for policy and research

While predisposing and need-based factors are inherently challenging to alter, Andersen (1995) suggests that enabling factors, such as having a regular source of care, can be modified to improve healthcare access [ 72 ]. This highlights the potential for policy interventions to address these enabling factors and thereby reduce unmet healthcare needs. For instance, increasing the number of primary healthcare providers in underserved areas, particularly in regions with high levels of unmet need, can help alleviate access barriers. This could involve policy measures aimed at incentivizing healthcare professionals to practice in these areas, such as setting up new primary care centers and increasing healthcare center operating hours. For example, in an empirical case study conducted in England, targeted primary care investment in deprived regions was shown to reverse the gap in the supply of primary care physicians [ 79 ]. Task-shifting, involving nurse practitioners and physician assistants in primary care roles, can also be an effective strategy, particularly for cases that do not necessarily require a physician’s expertise [ 80 , 81 , 82 ]. This approach can help optimize the use of healthcare resources, improve access to care, and potentially reduce wait times.

Routine monitoring of disparities in unmet healthcare needs at the local decision-making level is crucial. This practice can help identify emerging trends and areas in need of intervention, enabling policymakers to respond proactively. This could involve the development of health system performance indicators at the decision-making level. Additionally, conducting qualitative investigations is essential to get a deeper understanding of the multifaceted nature of unmet needs, offering insights into the lived experiences of individuals and the barriers they face in accessing healthcare. For example, qualitative research can explore the underlying mechanisms that drive the association between higher educational attainment, healthcare needs, and barriers to accessing services. This could shed light on the complex interplay between health literacy and access, informing the development of interventions that address these barriers.

Strengths and limitations

This systematic review provides a comprehensive overview of the current literature on unmet primary healthcare needs in the Canadian context, offering insights into the extent and quality of existing studies. The inclusion of multiple data sources and a thorough search strategy enhances the robustness of the findings.

However, the review also has limitations. First, the search did not explicitly search for grey literature, which may have excluded reports that are not published in peer-reviewed journals. Second, this review solely focused on quantitative studies to narratively summarize the level of unmet need in primary healthcare. Hence, it is potentially missing the nuanced interpretations and unique perspectives that could be gained from qualitative studies. Third, a meta-analysis was not conducted due to the heterogeneity of studies. Lastly, non-English studies were excluded from the current review. This language restriction may have missed studies in other languages.

The findings from this systematic review suggest that unmet need is directly associated with low income, mental health diagnoses, and chronic conditions, and inversely related to age, better-perceived health, and having a family physician. By identifying the factors associated with unmet healthcare needs, this study highlights the population groups that may benefit from targeted interventions to improve their access to healthcare services.

The review also revealed the heterogeneity in Canadian literature on unmet healthcare needs suggesting the need for standardized measures and approaches in future research. The selection of predictors that allow cross-study comparisons and appropriate analyses will lead to a better understanding and quantification of unmet primary healthcare needs in Canada. Further research is also needed to understand the mechanisms underlying the relationships between the factors identified in this review and unmet healthcare needs.

Availability of data and materials

Data that support the findings of this study are included in this published article and its additional files.

Abbreviations

Preferred Reporting Items for Systematic Reviews and Meta-Analysis

Risk of bias

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Acknowledgements

We are grateful to the library support staff at the Allyn & Betty Taylor Library (Western University) for their assistance in developing the search strategy for this systematic review.

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Jane S. Thornton and Shehzad Ali are joint senior authors.

Authors and Affiliations

Department of Epidemiology and Biostatistics, Schulich School of Medicine, Western University, London, ON, Canada

Feben W. Alemu, Jane Yuan, Seth Kadish, Surim Son, Kathryn Nicholson, Piotr Wilk, Jane S. Thornton & Shehzad Ali

Department of Medical Sciences, Schulich School of Medicine & Dentistry, Western University, London, ON, Canada

Sunbal Salim Khan

Department of Kinesiology, Faculty of Science, McMaster University, Hamilton, ON, Canada

Safa M. Nulla

Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland

Department of Epidemiology, Maastricht University, Maastricht, the Netherlands

Western Centre for Public Health & Family Medicine, Schulich School of Medicine & Dentistry, Western University, London, ON, Canada

Jane S. Thornton

Schulich Interfaculty Program in Public Health, Schulich School of Medicine and Dentistry, Western University, London, ON, Canada

Shehzad Ali

Department of Health Sciences, University of York, Heslington, York, UK

WHO Collaborating Centre for Knowledge Translation and Health Technology Assessment in Health Equity, Ottawa, ON, Canada

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Contributions

FWA was involved in the conception and design of the study, extraction, risk of bias assessment, validation, and interpretation of the data, and in writing the first and subsequent drafts of the manuscript. JY, SK, SS, SSK, and SMN were involved in the extraction of data, risk of bias assessment, and revision of the manuscript. PW and KN were involved in the interpretation of the data and critical revision of the article. SA and JST were involved in the conception and design of the study, interpretation of the data, writing drafts of the paper, and critical revision of the article. All authors read and approved the final manuscript.

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Correspondence to Shehzad Ali .

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Supplementary Information

13643_2024_2647_moesm1_esm.pdf.

Additional file 1: Appendix 1. PRISMA checklist. Table detailing PRISMA checklist items and the location where they are reported in the review.

13643_2024_2647_MOESM2_ESM.pdf

Additional file 2: Appendix 2. Search strategy. List of terms and keywords used to search for relevant literature across four databases.

Additional file 3: Appendix 3. List of the Included Studies. Reference list of the studies included in this review.

13643_2024_2647_moesm4_esm.pdf.

Additional file 4: Appendix 4. Associations in the Included Studies. Summary table of findings from the included studies.

13643_2024_2647_MOESM5_ESM.pdf

Additional file 5: Appendix 5. Predisposing, Enabling, and Need-based Factors. Tables of statistically significant associations between unmet need and predisposing, enabling, and need-based factors from the studies included in the review.

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Alemu, F.W., Yuan, J., Kadish, S. et al. Social determinants of unmet need for primary care: a systematic review. Syst Rev 13 , 252 (2024). https://doi.org/10.1186/s13643-024-02647-5

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Received : 14 June 2024

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Published : 02 October 2024

DOI : https://doi.org/10.1186/s13643-024-02647-5

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