Psychosocial vulnerability among carers of persons living with a chronic illness: A scoping review

Aims: To outline and examine evidence related to the meaning of ‘ psychosocial vulnerability ’ among caregivers of persons with chronic illnesses. Background: The number of informal caregivers continues to rise globally. Their risk of psychosocial vulnerability is frequently overlooked, but understanding their psychosocial vulnerability may offer insights into meeting their needs. Design: Scoping review following the PRISMA 2020 extension guidelines. Data sources: The databases CINAHL, Embase, Medline/Pubmed, Cochrane Library, PsycINFO, Web of Science, Google Scholar, Lenus and ProQuest were systematically searched to identify original research. No date limit was set, and 23 studies were included. Review methods: A five-step approach using the Arksey and O'Malley framework. Thematic analysis guided data analysis. Results: Carers' psychosocial vulnerability occurs when they experience barriers to resources while access and use of supports reduce risk. Antecedents of psychosocial vulnerability include a carer's age and sex, socioeconomic status and their health and wellbeing. Psychosocial vulnerability affects carers' relationships and causes personal losses. Conclusions: The concept of carers' psychosocial vulnerability is complex. Recognition of carers at risk for psychosocial vulnerability would help nurses direct relevant support and information to carers who need it most.

• Barriers and access to relevant support and homecare remain an issue for carers and patients worldwide.
• Caregivers frequently succumb to vulnerability as a result of their new identification with the role as well as the duty tied to the role.
What this paper adds?
• Findings offer an understanding of factors which may contribute to carers' psychosocial vulnerability.
• An overview of the impact of caring for individuals with a chronic illness on carers' lives.
The implications of this paper • Recognition of those at risk for psychosocial vulnerability could enable health care professionals to provide the relevant support and information to carers who need it most.
• Further qualitative research is needed to increase understanding of carers' experience of caring for someone with a chronic illness.
• Carers must be seen as essential components of healthcare in order to ensure connection between policy and service delivery.

| INTRODUCTION
Worldwide, the burden of chronic illness is rapidly increasing. In the year 2020 alone, 57% of diseases were considered to be chronic illnesses (WHO, 2020). The number of carers continues to rise, with recent statistics in 2016 showing an increase to 4.4% from the previous 4.1% in 2011 in Ireland (Central Statistics Office, 2016), increasing from 15% in 2011 to 17% in the United Kingdom (Carers, 2020) and consisting of 11% of the population in Australia (Carers Austraila, 2021). Similarly, a rise in caregiver numbers is reported in the United States, 19.2% of the population versus a previous 16.6% in 2015 (National Alliance for Caregiving, 2020).
Providing informal care for people with chronic disease and multimorbidity is burdensome, owing to an increased use of health care services, increased risk of adverse events and outcomes and a decreased ability to adhere to complex treatment regimens (Price et al., 2020). Carers develop a unique relationship with patients (Vermorgen et al., 2021) and are often the experts with tacit knowledge of the patient's condition, symptoms and disease exacerbations (Whitehead et al., 2018).
Often forgotten is the vital role of carers to the economy. It is financially impossible for formal health and social care systems to provide the level of unpaid care given by informal carers (Vermorgen et al., 2021). For instance, in the United Kingdom, carers save up to £132 billion per year, almost the equivalent of the cost of a second NHS (Carers, 2015).
Primary care is at the forefront of chronic disease management, and the future of nursing will inevitably include supporting those with long-term conditions and their families in the community (Rothman & Wagner, 2003). There is now an opportunity to maximize familycentred care through holistic models of care empowering patients and families (Salmond & Echevarria, 2017). However, nursing practice in the field of families, chronic illness and self-management remains relatively unexplored and there is a need to find ways of engaging caregivers as part of nursing care (Rosa et al., 2016;Whitehead et al., 2018). Evolving nursing roles such as the nurse practitioner, care coordinator and case manager in the community offers opportunity to shift the focus from a patient centred model to a patient and familycentred model (Salmond & Echevarria, 2017).
For carers, inadequate access to services leaves them prone to vulnerability. Vulnerability as a concept in healthcare has received increasing attention in the last decade despite conflicting discussions over its heterogeneity. It is widely accepted that the population's health and access to medical care strongly relate to vulnerability (de Groot et al., 2019). Vulnerability is described as a human condition and constant experience. More specifically, vulnerability is susceptibility to any kind of harm, whether physical, moral or spiritual, at the hands of an agent or agency and is often affected by the individual's perception and the situation that they currently experience. It is also related to disempowerment and loss of autonomy (Gjengedal et al., 2013). Psychosocial care refers to concern with the psychological and emotional wellbeing of the patient and carers, including issues of self-esteem, adaption to illness and its consequences, communication, social functioning and relationships (Dix & Glickman, 1997).
Caregivers' susceptibility to psychosocial vulnerabilities is frequently overlooked as the patient is considered the core of the healthcare system. However, caregivers frequently succumb to vulnerability as a result of their new identification with the caregiver role as well as the duty tied to the role (Kittay, 2011). The majority of studies on vulnerability in healthcare have focused on biomedical outcomes relating to mortality and morbidity; however, this approach fails to provide insight into how it feels or what it feels like to experience psychosocial vulnerability (Flaskerud & Winslow, 1998;Rogers, 1997;Shi et al., 2008). Understanding how and why people experience vulnerability is crucial to ensuring that services meet a community's need (Heaslip et al., 2018).
This scoping review is timely as it offers examination of psychosocial vulnerability in this population, and insight into how services may meet carers' needs.

| Aim
The scope of our review is broad, focusing on psychosocial vulnerability in relation to informal carers of patients with a chronic illness.

| Design
A scoping review seeks to provide an overview of the coverage of the available literature on a topic. We conducted our scoping review using Arksey and O'Malley's (2005) framework. The framework has advanced since 2005 through the work of others (Levac et al., 2010;Peters et al., 2015), and we followed the steps outlined in the advanced framework (Peters et al., 2017). We registered our protocol in February 2020 on the open science forum (https://osf.io/us3jc/? view_only=05f3ac3bbc7c472a98e4c8044d92b678) to ensure transparency.

| Step 1: Identifying the research question
Our research question aimed to explicate the meaning of 'psychosocial vulnerability' in informal caregivers of patients with chronic diseases.

| Stage 2: Identifying relevant studies
The search strategy was developed iteratively by the research team with the help of a specialist information librarian. Firstly, we searched EBSCO CINAHL using a combination of relevant Subject Headings and keywords in the title and abstract using wildcards and truncation to test out our chosen search terms (See Supporting Information S2). We also piloted different searches using proximity operators. The initial search query used the key concepts; however, differing concepts in the literature related to the key concepts were also used in the searches (See Table 1).

| Reference lists
We checked the bibliographies of full text studies selected for inclusion to ensure they had been included in the scoping exercise. This process identified seven further references, of which one full text was included. The 23 studies included in this review were read and summarized by the first and last authors, and a template for data extraction was generated. The first author analysed each paper and undertook data extraction (Table 2). Given the heterogeneity of studies, we used a narrative synthesis approach to collate, summarize and map the literature. The first author examined which concepts related to 'psychosocial vulnerability' in each study as presented in the results and how they were organized. For each paper, the logic of the structure of the description was extracted based on the terms used.

| Quality appraisal
In line with scoping review methodology, an assessment of the quality of the included studies was not performed (Table 3).

| RESULTS
The results section represents Stage 5 of the scoping review approach, presented in the PRISMA-screening flowchart and a narrative description based on themes that emerged from the extracted data (Table 4).

| Methodologies
The most common methodology was cross-sectional (12 studies).
Sociodemographic data were collected across all studies, and a variety of measures were used to measure carers' burden, quality of life and depression. Two randomized clinical trials were included. One focused on a family-centred empowerment intervention model (Bagheri et al., 2019); the other used an assistive technology technology intervention (Ben Mortenson et al., 2018). Two experimental studies focusing on a bio (lymphocytes) psychosocial perspective were included (Mills et al., 1999(Mills et al., , 2004, and one pilot study explored the impact of caregivers providing gentle massage to their loved ones (Kempson & Conley, 2009) Two qualitative studies were included (Blank, 2018;Simpson et al., 2010) and one mixed method study (Aloweni et al., 2019) (Table 3).

| Barriers to resources
Carers experiencing a lack of information about the disease trajectory, inadequate financial support and respite, were more vulnerable to coping (Kenny et al., 2014;Simpson et al., 2010).
Furthermore, difficulty providing care, higher levels of care and unmet needs were attributed to vulnerability to cope (Navaie-Waliser et al., 2002).

| Facilitators of support
Lower levels of vulnerability had a higher correlation with social support, and higher vulnerability scores are associated with unwillingness to use the support (Crossen-Powell, 1993). In one study, carers were aware of support groups (69.4%, n = 242), but only 27% attended, mainly due to lack of time, challenges in access and concerns over anonymity (Hussain et al., 2018). A further 30% were unaware of support groups, leading to marginalization particularly for those living in rural areas (Hussain et al., 2018). Sharing with peers was viewed as vital to caregiver wellbeing, enabling them to 'bounce back' (Blank, 2018;p.74), and community and organizational agencies offered a forum for communicating and validating feelings.
Strengths emerged with supportive resources enabling carers to negotiate the life changes brought on by caring (Blank, 2018). Further coping facilitators identified include the following: family, a caring medical team, financial aid and formal medical system support (Simpson et al., 2010).
Female caregivers had a higher incidence of depression, and the impact of caring on vulnerability was found to be higher in female carers (Baanders & Heijmans, 2007;Badr et al., 2017;Carter, 2010;Navaie-Waliser et al., 2002;Trivedi et al., 2014). Furthermore, higher levels of personal strain were more prevalent in female carers compared to male carers (Baanders & Heijmans, 2007;Rivers, 2016;Yildiz et al., 2017). In addition, a study of protective psychosocial factors in

| Health and wellbeing
Carers with an illness or condition struggled both physically and emotionally (Hussain et al., 2018;Simpson et al., 2010), with a report that 63.9% (n = 369) of caregivers experienced depression (Carter, 2010).
Higher levels of caregiver burden and poorer general health were associated with increased levels of depression in both the carer and care recipient (Badr et al., 2017).
Those caring for older adults were more likely to have a chronic condition, with 76% in total (21 informal caregivers) in one study and 85% of caregivers in another study experiencing physical disturbances (62 caregivers) (Blank, 2018;Tartaglini et al., 2014). Badr et al. (2017) concluded that on average caregivers had 2.7 chronic health problems and over half of them had less than optimal health in a survey on caregiver dyads (n = 92) with COPD. In addition, caregivers' physical health problems were significantly related to decreased engagement in leisure activities and those with low leisure activities reported more symptoms of depression (Ficker, 2010).
Length of time spent providing care led to deterioration in caregivers' self-rated health. In a longitudinal study on carers' health functioning, physical functioning worsened at 4 years (Kenny et al., 2014).
This was most likely because the level of care provided increased over time (Kenny et al., 2014;Navaie-Waliser et al., 2002). The length of time providing care, especially in the context of severe dementia and care recipient functionality, resulted in the increased likelihood of caregivers reporting poor/fair self-rated health (von Känel et al., 2019).
From a biopsychosocial perspective, Mills et al. (1999)  unwell. The chronic stress of caregiving led to sympathetic and immune deficits thus implicating their wellbeing (Mills et al., 1999(Mills et al., , 2004).

| Relationship changes
Over time, a person's chronic illnesses has a significant negative impact on their relationship with the informal carer, especially when the disease burden worsens, and impacts the carer's coping capacity (Badr et al., 2017;Blank, 2018;Carter, 2010;Simpson et al., 2010).
Carers recognized the impact of caring on many aspects of their lives, and with disease progression, loss of the family, relationship intimacy and identity became significant (Simpson et al., 2010).
As disease progresses, it can lead to carers questioning their feelings and intimacy for their partner, resulting in a gradual loss of connection to the care recipient (Blank, 2018). Furthermore, over time, relationship changes can lead to a change in caregiver perspective, grieving for the loss of the relationship especially where the care recipient has become increasingly more demanding. The level of appreciation shown by the care recipient for the carer impacts the carer (Awadalla et al., 2006). The carer can struggle not only with caring for the patient but often the loss of their companionship and parts of themselves unique to the relationship with the care recipient (Blank, 2018). However, reducing caregiver burden and increasing dyadic adjustment through prevention and intervention can improve caregivers' mental health thus emphasizing the impact the quality of the relationship has on the carer (Rivers, 2016).
In a pilot study involving carers administering a massage to care recipients, carers felt deeply connected to their loved one and further empowered to express their love. It enabled carers to feel like they had an additional tool in their 'toolkit' and they felt more able to 'hang in there' (p120); it also calmed the care recipient and led to 'connection' again, thereby facilitating the grieving process (Kempson & Conley, 2009 With disease progression, carers questioned who they were and their loss, often resulting in powerlessness (Simpson et al., 2010).
Powerlessness is a lack of control over their situation and the isolation that comes with care giving. At times, carers had little or no family support, especially when family lived far away. Caregivers' losses included their social life, freedom, security and sense of stability (Simpson et al., 2010).

| Positive effects and empowerment
Acceptance was a crucial component of carer wellbeing (Blank, 2018) and finding new meaning in life contributed to caregivers' wellbeing, as well as learning to value every day (Awadalla et al., 2006;Blank, 2018).
Carers' empowerment was influenced by their recognition of inner strength and personal resources. Family and friends offer a source of connection, a sense of reinforcement as well as empathy and assistance. Engaging socially helped carers to stay connected and negotiate life changes, which was important especially when their own self-identity was lost (Blank, 2018;Simpson et al., 2010).
Involving caregivers in altruism such as volunteer work also led to empowerment especially as carers felt they were contributing something to the disease knowledge. Altruism and engagement with charity and advocacy organizations enabled carers to feel like they were receiving the social support they needed and increased satisfaction with life (Rivers, 2016).
Feeling intrinsically rewarded was positive for the caregiver and enabled them to persevere with a sense of accomplishment thus empowering them (Baanders & Heijmans, 2007;Kempson & Conley, 2009). Furthermore, the search for a new sense of who they were was vital to wellbeing especially when connection was lost as the disease progresses (Blank, 2018).

| Finding a new sense of self-awareness
Acknowledging the 'ups and downs' and taking 'one day at a time' (p.143) were coping mechanisms employed by carers (Hussain et al., 2018;Simpson et al., 2010). Hopefulness and finding new meaning of life was also a way of coping. Carers found a new purpose to their life and sought solace in faith, religion, reaching out to others and self-care (Awadalla et al., 2006;Blank, 2018;Simpson et al., 2010). Those who coped well found a new sense of who they were, enabling growth and acceptance, learning to be grateful and enabling love to give them strength to continue on (Simpson et al., 2010).

| DISCUSSION
Using a thematic approach, this review has revealed the complexity of carer psychosocial vulnerability comprising of factors such as barriers to resources, facilitators of support, age and sex, socioeconomic status and health and wellbeing. Consequences of psychosocial vulnerability include relationship changes, personal losses, positive effects and empowerment and finding a new sense of self-awareness.

| Factors relating to psychosocial vulnerability
Studies described carers' demographic characteristics as being generally female, middle aged, with a low to middle income and often unemployed or ceased employment due the nature of caring. Older caregivers and those with pre-existing conditions were shown to find caregiving physically challenging. Caregivers were more likely to be older, in the middle age to older age category (Lai, 2012).
This is a cause for concern, with the reality of older adults caring for older adults, with often a reduced ability to provide adequate care due to their own declining health, presence of an illness, mobility and strength in carrying out tasks (Schulz & E. J., 2016).
In terms of socioeconomic status, financial burden was a major concern reported in this review. Chronic illness adds expense to households (Essue et al., 2011). Financial burden is considered more prevalent among the older population of caregivers, particularly females and higher levels of caregiver burden are associated with financial pressure (Lai, 2012).
In our review, reported depression was commonplace among carers, specifically females and carers with an illness themselves tended to struggle more physically and emotionally. Worry is a feature of carers' lived experience (Jowsey et al., 2016). As well as this, depression in caregivers is associated with potentially harmful behaviours (e.g. screaming and yelling) and poor levels of tolerance (Smith et al., 2011). Leisure engagement plays an important role in mediating the relationship between caregiver stress and subjective wellbeing (Chiu et al., 2020). Furthermore, access to services for those who are considered to be more at risk alleviates stress and maintains resilience and wellbeing thus emphasizing the vital role of appropriate support (Palacio et al., 2019).

| Support for carers
Our review has shown the importance of support for carers. Many carers are disadvantaged by caregiving and few are offered support from services (Larkin & Milne, 2014). Overcoming barriers to accessing services or resources is crucial and can be helped by having early and constant contact with a HCP (Stephan et al., 2018). However, a recent qualitative study with multiple stakeholders involved in dementia care found that barriers in accessing services or resources could often be attributed to the individual themselves which may be as a result of a lack of knowledge and information or because of their own beliefs about formal care (Stephan et al., 2018).
Those who do not recognize themselves as carers can be less likely to access support (Larkin & Milne, 2014). Perceived social support may be a good predictor of subjective burden (Del-Pino-Casado et al., 2018). Uptake of services was generally found to be better among carers who were open minded and sought support proactively whereas emotions such as fear and anxiety contributed to non utilization (Stephan et al., 2018).

| Carer empowerment
Helping unpaid carers and family members to develop knowledge, skills and actions to care for themselves and others is essential for empowerment. Carers should be in the driving seat of change, defining what empowerment means and seeking ways to empower those who are disadvantaged or unable to negotiate life changes brought on by caring (Blank, 2018;Larkin & Milne, 2014).
Carers' growth and acceptance of their caring role can lead to a more positive experience (Blank, 2018;Solomi & Casiday, 2017).
Those who experience positive effects of caregiving generally sought meaning or a new purpose through intrapersonal satisfaction such as growth, self-acceptance and the development of new skills (Campos et al., 2019). Understanding the interplay of rewards, challenges and personal development is a necessary step in creating adaptive solutions that better support the caregiving family (Anderson & White, 2017).

| Implications for nursing practice
Consideration of evolving nursing roles needs to take place in line with changing aspects of disease and diagnosis (Coates, 2017). Worldwide, the role of the nurse needs to re-evaluate chronic disease management to address the challenges faced. It is expected that there will continue to be an ongoing shortage of nurses worldwide (McGill, 2019), and this will impact on the support for informal carers unless addressed.
The challenge of managing chronic disease is best addressed through collaboration between the healthcare provider, patient and their family or informal carer (Canadian Nurses Association, n.d.).
There is now a significant move towards the primary care setting for managing long-term illness, and this is often the best place for a relationship to be established and interventions introduced (CordisBright, 2018).
Nurses can ensure that families are well supported through educating carers on diagnosis and disease management and include patients and carers as members of their own healthcare team, working with other healthcare professionals and services to ensure that the best supports are available (Reinhard et al., 2008). Furthermore, nurses' skillset places them in an optimum position to provide appropriate health education and self-management strategies for both patients and caregivers and provide information that makes the best use of community resources (Watts et al., 2015). An essential part of this process would be an assessment of carers' psychosocial vulnerability, and the factors identified in this review could guide this.
Nurse practitioners are ideally placed to support carers, with their interventions reported to reduce levels of caregiver burden with particular benefits for people rendered vulnerable for example due to ethnicity, socioeconomic status and ageing (Grant et al., 2017). With chronic illness management centred within the primary care system, there is a need for nursing and other health care professionals to modernize and move towards treating patients and their families as a complete unit (O'Connor et al., 2018). The focus of education for future nurses must be prioritized and differentiated from other disciplines addressing the person in a holistic manner and what it means to include family (Ambrosio et al., 2021). This focus will ensure that nurses work towards a model which empowers patient and families to assume responsibility for the disease and self-management (Salmond & Echevarria, 2017).
Carers have expressed their need for collaboration with healthcare professionals, as well as a contact for their care journey, especially for the transition between services and psychosocial support (Campling et al., 2017). This offers opportunity for the development of nursing roles such as nurse navigators and care coordinators to support families (Vermorgen et al., 2021), roles shown to decrease costs and improve outcomes (Toles et al., 2017).

| Limitations
Only studies in the English language were included; most had small sample sizes with purposeful or convenience samples, thus limiting generalizability. Furthermore, there were few longitudinal studies and a high number of cross-sectional studies. Male carers were underrepresented, with only two studies including more male than female caregivers. However, the majority of caregivers worldwide are females accounting for approximately 66-70% of the caregiving population (Carers Austraila, 2021;Sullivan & Miller, 2015). Studies were also limited in representing ethnic minorities. Moreover, most of the studies were undertaken in the high-income countries. The applicability of these studies internationally with varied healthcare systems and contexts is therefore limited.
Mapping the results was challenging due to the heterogeneous nature of the included studies. No study specifically focused on psychosocial vulnerability among carers, confirming its conceptual immaturity. However, rich insights were provided by one qualitative study describing a caregiver vulnerability concept map, suggesting a downward spiral effect, where disease-related issues appear to initiate or escalate negative affects which in turn impacts coping thus leading to vulnerability (Simpson et al., 2010). In addition, the findings reported in the two RCT's highlight that resource availability has positive effects on carers and influences levels of psychosocial vulnerability (Bagheri et al., 2019;Ben Mortenson et al., 2018).

| CONCLUSION
The results of our scoping review will frame further exploration to help refine an understanding of carer psychosocial vulnerability. Our findings will also be useful in policy implementation and service design, ensuring a carer-based approach to planning.
As the prevalence of chronic illnesses continues to rise, carers' psychosocial vulnerability deserves more attention and carers must be seen as essential components of healthcare in order to ensure connection between policy and service delivery.