Background
Caregivers who provide unpaid care for family or friends with an illness or disability, occupy an uneasy position within the healthcare system. The caregiver contribution may be formally acknowledged if taken into account as part of the care recipient’s needs assessments and service allocation. It is, however, often taken for granted by societies and individuals as a ‘natural’ expectation for what families do and with caregivers often relegated to the margins of care teams, without training or support [
1]. The ‘gift’ of caregivers’ contributions in terms of the care they provide for loved ones and the economic savings for the healthcare system [
2] often comes with personal consequences that include poor physical and mental health, social isolation, professional sacrifices and economic loss [
3‐
7]. Studies of caregivers’ roles in healthcare systems refer to ‘hidden costs’ and ‘invisible contributions’ [
8], and the need for attention to caregivers’ wellbeing and support [
9]. Caregivers themselves have highlighted the personal value and benefits they realize in caring for another person, yet given that caregivers’ contributions will only grow in importance, it is imperative to develop a more balanced equation through policies and programs that aim to support them in their role [
10,
11].
The prevailing conceptual model of the role of caregivers was developed more than a quarter century ago [
12], based on a system’s perspective, with only minor adjustments over time [
13]. Since then, there have been significant changes in health, healthcare, and social structures in most developed systems, with implications for caregivers’ roles. The epidemiological profile of the population in need of care has changed substantially due to technical advances, such as the introduction of new medical and surgical interventions, enhancing survival rates among patients with chronic conditions, but with increasing prevalence of frailty and multi-morbidity. One study reported that, the prevalence of two or more chronic conditions rose by 29% in Canada, among adults aged 40 years and older, between 2001 and 2012 [
14]. Yet current clinical systems that evolved from specialist care and single, disease-oriented programs are poorly equipped to deal with such multi-morbidity [
15]. It has been argued that person-centered or relationship-centred approaches may be more effective in this evolving scenario [
16‐
18], but also that informal caregivers should feature more centrally in the provision of individual care and in decision-making [
19,
20]. Societal changes have also had an impact on the nature of caregiving, given, for example, smaller families, more women in the workforce, and higher divorce rates, which all reduce the number and proximity of family members available to care [
21]. Collectively, these changes have contributed to the increasing care demands of persons cared for by informal caregivers in the current medical and social context.
Our objectives were to explore how caregivers espoused ideas about their roles in consideration of Twigg’s typology, and to examine their perceptions of barriers in performing these roles. We have drawn from qualitative interviews conducted previously by our team involving a diverse sample of caregivers caring for people with chronic physical illness in Canada. We revisit this uneasy balance between assumptions of caregiving as a ‘natural’ expectation and the increasingly complex context of caring for someone at home or from afar.
Caregivers’ roles from the system’s perspective: revisiting the typology
In 1989, Twigg proposed a seminal model that articulated three roles for caregivers, as viewed from the perspective of social care agencies: caregiver as a resource, co-client, and co-worker [
12]. This typology has been subject to subsequent iterations and alternate frameworks have emerged, for instance, in consideration of a ‘superseded carer’ where agencies assume responsibility to liberate the care recipient from a caregiving relationship [
13], or to consider different professional perspectives [
22], illnesses [
23], patient populations [
24], and health system contexts [
25,
26]. These efforts have, however, left the original typology fundamentally unchallenged and substantially unchanged. In this paper, we consider Twigg’s original model, describing three roles for caregivers (described briefly below), as a framework to help guide our analysis of qualitative data in this study, to assess fit and explore any gaps in its application to the caregiving narratives about roles as shared in our original study.
Caregiver as a resource
This is the most common view of caregivers as portrayed through different studies. The role as ‘resource’ is presented as “being spontaneous and improvised”, “motivated by love and obligation”, where caregivers possess the “necessary skills, knowledge and competence” ([
25], p.31]. These quotes reflect the prevailing view (in North America at least) that informal care is not a substitute for formal care, but merely fills in the gaps [
25]. As a ‘given’ resource [
12], this notion reinforces an implicit social norm of caregiving as a ‘natural’ adoption of tasks related to social responsibilities assumed as parents, children or partners.
Caregiver as a co-worker
In describing the caregiver as a co-worker, authors evoke “a co-operative and enabling role”, where the “caregiver and healthcare professionals work in parallel with each other” ([
12], p.58), as “equal players in the caregiving process” ([
25], p.33). Somewhat tempering this ideal, however, Ward-Griffin and McKeever notice that nurses recognized caregivers’ expertise but, under the notion of ‘teamwork’, collaborated “in an essentially co-opting and controlling way” ([
22], p.96]. Viewed from the caregiver’s perspective, Stajduhar et al. describe caregivers as having “established and interpreted themselves as integral members of the end-of-life caregiving team”, thus validating this role as being salient to their experience ([
23], p.1794].
Caregiver as a co-client
As co-clients, the system acknowledged that caregivers themselves are in need of care, requiring professional support to cope with the situation and function optimally in their role [
12,
22,
25]. This view is frequently espoused by caregivers themselves, for instance, in a study [
23] where caregivers of palliative care patients saw themselves as being in need of care together with the care recipient and were actively seeking support.
Methods
In the original qualitative descriptive study [
27], we conducted in-depth individual interviews with a diverse sample of adult caregivers from across Canada caring for someone with a chronic physical illness. Interviews were audio and/or video recorded. Diversity was considered on two dimensions: caregivers’ individual characteristics (e.g. age, sex, ethnicity, socioeconomic status) and attributes of the caregiving experience (e.g. chronic condition of the care recipient, years of caregiving). The original study including the methods have been published [
6].
Ethics approval for the original study and secondary analysis was obtained from St. Mary’s Hospital Research Ethics Committee. Patient participants provided informed consent for the original interview and, following review of their transcript, provided a second consent for use of their interview material for the publication of results on our web site (
www.healthexperiences.ca), secondary analysis, teaching, and academic publication. Participants could choose to use their own name or an alias as part of their consent for use of their data in publications or secondary research; these are the names that appear with the selected quotes in the results section.
We interviewed 41 participants between September 2011 and October 2012 across seven Canadian provinces; two interviews were with couples – one couple caring for their adult child and another caring for an aging parent – and one participant was interviewed twice at her request. Three participants withdrew for unknown reasons, leaving 39 participants, and 40 transcripts for analysis. The characteristics of participants are presented in Table
1. The overall approach for the analysis and key themes were reviewed together with an expert panel including caregivers and community-based organizations.
Table 1
Characteristics of 39 participants
< 20 | 3 | 7.7 | 20–39 | 5 | 12.8 |
20–39 | 13 | 33.3 | 40–59 | 14 | 35.6 |
40–59 | 22 | 56.4 | 60–79 | 18 | 46.2 |
60+ | 1 | 2.6 | 80–89 | 2 | 5.1 |
Caregiver Status, n = 43* | | | Caregiver Sex, n = 39 | | |
Current Caregiver | 32 | 74.4 | Female | 28 | 71.8 |
Post-caregiver | 11 | 25.6 | Male | 11 | 28.2 |
Time Spent Caregiving (Years), n = 39 | | | Age of Care Recipient (years), n = 431 | | |
0–9 | 14 | 35.0 | < 20 | 1 | 2.3 |
10–19 | 15 | 38.5 | 20–39 | 2 | 4.7 |
20–29 | 6 | 15.4 | 40–59 | 8 | 18.6 |
30–39 | 4 | 10.3 | 60–69 | 12 | 27.9 |
40–49 | 0 | 0 | 70+ | 11 | 25.6 |
50–59 | 1 | 2.6 | Deceased | 9 | 23.1 |
Care Recipient Designation, n = 43* | | | Caregiver Employment, n = 39 | | |
Mother | 12 | 27.9 | Full-time | 12 | 30.8 |
Father | 2 | 4.7 | Part-time | 8 | 20.5 |
Wife | 5 | 11.6 | Retired | 13 | 33.3 |
Husband | 17 | 39.5 | Lost job due to caregiving duties | 1 | 2.6 |
Friend | 3 | 7.0 | Sick leave | 1 | 2.6 |
Child | 4 | 9.3 | Not working | 4 | 10.3 |
Care Recipient Residence, n = 39 | | | Marital Status, n = 39 | | |
Another household | 1 | 2.6 | Married | 27 | 69.2 |
Same household | 23 | 59.0 | Widowed | 5 | 12.8 |
Health care institution | 6 | 15.4 | Separated | 1 | 2.6 |
Deceased | 9 | 23.1 | Single | 6 | 15.4 |
Mother Language, n = 39 | | | Ethnic Background, n = 39 | | |
English | 26 | 66.7 | Aboriginal | 2 | 5.1 |
French | 4 | 10.3 | Asian | 2 | 5.1 |
Bilingual | 4 | 10.3 | Black | 1 | 2.6 |
Other | 5 | 12.8 | Caucasian | 34 | 87.2 |
For this study, we conducted a secondary qualitative analysis of the original transcripts to explore caregivers’ perspectives on their roles more specifically. We used an iterative inductive-deductive approach. First, we undertook thematic analysis to identify emergent themes related to how people spoke about their roles [
27], using the method of constant comparison involving ongoing review of emergent and existing findings in the analysis [
28,
29]. Second, we organized role descriptions within the text as per the Twigg framework. The transcripts were reviewed by one researcher to identify initial codes from the data (e.g. activities related to proving care) and general categories (e.g. grey areas of responsiblities between healthcare professionals and caregivers); a second researcher worked together with the first to refine the categories, and select data and quotes pertinent to the emergent themes. The Twigg framework was applied in a deductive approach to consider the findings in terms of fit with the three different roles (e.g. challenges for caregivers as co-worker), and the researchers identified and discussed any outlying descriptions of roles for further analysis and interpretation. Differences in coding and interpretation were discussed and resolved between the two researchers. Analysis was conducted by IO and SL and discussed with AQ. The researchers adopted an open, reflective approach to the analysis, with consideration of their own personal experiences of caregiving and as women in discussions of the interpretations of the data.
Discussion
In this article, we sought to examine the extent to which caregivers, in a wide range of circumstances, described their experiences in terms that were congruent with Twigg’s typology of caregivers’ roles [
12]. We demonstrated that the typology continues to be relevant for caregivers in current contexts; accounts of being situated as a
resource were more prevalent, in addition to accounts of roles consistent with that of
co-clients and
co-workers. There were relatively few participants who described their experiences as a co-client, which is indicative of the challenge for caregivers in receiving attention for their own needs in spite of abundant evidence related to the negative consequences of caregiving. From our analysis, we also identified a fourth role reflecting participants’ descriptions as
care coordinators.
The range of routine activities assumed by caregivers in this study typically encompassed engagement with multiple roles in fulfilling day to day responsibilities, and challenges were encountered particular to each type of role. In the absence of changes in policy and practice that respond to caregivers’ needs, the sustainability of their (voluntary) contributions to care, and consequences related to their own health, will ultimately affect the quality, outcomes and overall costs of care at individual and systems levels.
Twigg’s framework [
12] highlights the variable character of the relationship of agencies or healthcare organizations towards caregivers; agencies typically relate first to caregivers as a resource to help care for the recipient for which they (the agencies or healthcare professionals) have no formal obligations in terms of care. A recent Canadian study [
30], demonstrated the potential value of using a formal assessment tool for caregivers – the Caregivers’ Aspirations, Realities and Expectations – C.A.R.E. Tool, a questionnaire type instrument intended for completion by a healthcare professional with a caregiver. The results indicate that the process of completing the assessment together could encourage professionals to view caregivers as persons in their own right, who have independent but related needs for health and social care, and who are equipped with knowledge to contribute to patient care. Caregivers valued the assessment, which encouraged them to ‘take stock’ of their situations and to build positive relationships with their care professionals.
As co-workers, caregivers move into the intersection between the formal and informal sectors, as per Twigg’s framework. Guberman and Maheu [
25] describe how the co-worker perspective requires a move away from the traditional hierarchical relationship to one of co-operation, complementarity and reciprocity that enhances the integration of professional and caregiver expertise. Most caregivers in our study described experiences of feeling like or acting as a co-worker, but this was often met with limited levels of support or recognition. And yet all caregivers in this study talked about being expected to make decisions and perform tasks of a medical nature for which they often felt ill-equipped and poorly supported. The situation of co-operation often failed to materialise for the caregivers in our study.
We argue that the ‘care coordinator’ role warrants separate consideration in future typologies given the descriptions shared by caregivers regarding actions to arrange and coordinate care, as well as navigate complex, poorly integrated care systems, often without support from a broader team. Although it could be argued that this overlaps somewhat with the ‘resource’ and ‘co-worker’ roles, this distinction came out strongly in our data, and may be a reflection of the structural silos and challenges inherent in navigating health systems. Unlike patients, caregivers typically do not become part of a structured care plan where they receive advice and guidance on how to best care for the patients. There are uncertainties about whose responsibility it is to ensure that caregivers are well informed and supported, not only as support for themselves but also to ensure the quality of care provided to the care recipient. Caregivers in our study described care responsibilities that fall in ‘grey’ areas, where it is unclear where the responsibility of the caregiver stops and that of the healthcare professional starts. Caregiver organizations have largely tried to fill the gap for support and advice but it could be argued that certain caregiver guidance and support should be formalized within the health care system.
With caregivers as co-clients, the caregivers’ concerns, as per the framework, become integrated into those of the agencies’ concerns and are treated as care recipients. Very few caregivers in this study expected to be treated as co-clients; in fact, it appeared to come as a surprise when their needs (over and above that of the client) were acknowledged and suggestions were offered for seeking support. This was often described as an important turning point in their caregiving trajectory, as it typically coincided with periods where the situation was rather dire. It seemed that when healthcare teams ‘planted the seed’ – opening a conversation about available resources and ways to find support – caregivers felt they had ‘permission’ to seek help. This lack of attention to caregivers’ needs warrants further attention in practice and policy; a reluctance to seek care until one’s own needs become urgent, as described by participants in this study within the co-client role, puts both caregivers and care recipients at risk.
In this way, it seems that supporting caregivers can be a way to empower them but this may not align with providers’ assumptions about empowerment. A qualitative study, also conducted in Canada, unpacked descriptions of family caregiver empowerment, from the perspectives of homecare managers and leaders [
31]. While many shared that educating caregivers, involving them in decision making/ care planning and articulating the caregiver role as worthwhile was empowering for caregivers (particularly during times of crisis) others felt that reliance on health system resources was
disempowering and were more in favor of supporting self-care. This finding speaks to the importance of unpacking the provider/manager and leader perspectives and assumptions about their roles and goals in supporting caregivers.
Adopting a relationship-centered approach (emphasizing the importance of partnerships between patients, caregivers, and healthcare providers as a central focus for health care delivery), as described by Beach and Inui [
32] and developed as the ‘Senses Framework’ by Nolan et al. [
33], could help to shape health system responses to the challenges shared by caregivers in our study. Relationship-centered care rests on four foundational principles: of forming and sustaining genuine relationships; being aware of personal biases and honoring the uniqueness of the person; reciprocating; being emotionally present and showing empathy. Such an approach would recognize caregivers as core, valued, members of the team, and create the space for them to express and learn about the care and support that they are entitled to receive.
Limitations and strengths
Even though the definitions of the three roles presented by Twigg were relatively clear, the delineation between these categories became less clear in the analysis of the caregivers’ narratives. From the relatively small number of narratives collected in our study, we found that caregivers’ roles and responsibilities as described by them were intertwined in a web of different resources, interactions, expectations and needs. Most of our respondents reported enacting at least one, and often all four, roles throughout their caregiving experience. The particular strengths of this study are in the approach for our analysis and contributions to the existing literature on this topic to help advance the conceptual and practical notions of caregiving and its consequences from a broader health and social perspective.
Research & Practice Improvement Implications
The findings in this study point to the need for further investigation and evidence-informed practice change in at least two areas of enquiry – first, that of the caregiver role as
care coordinator, to help reduce the substantive burdens associated with navigating complex health and social care systems [
34]. Future work should complement the emerging research in areas such as empowering caregivers in this role through educational and practical support services [
35], technological advances, such as the use of electronic health tools for caregivers [
36] or virtual hospital-to-home communication solutions [
37]. More evidence-informed, practical solutions are needed at the levels of system, service and care that offer tangible support across a range of caregiver abilities, roles and contexts. Second, more evidence-based solutions are needed to support caregivers as
co-workers, as systems transition to more patient-centered approaches, such as how to engage caregivers effectively as members of the care team, or engage with families to co-design services and quality improvements, or to promote shared decision-making [
38].
Friedman & Tong developed a framework for Integrating Family Caregivers into the Health Care Team [
39]. In this US-based study they conducted a literature review on the role of family caregivers in the coordination of care and key informant interviews with payers, caregivers and care providers to better understand barriers and facilitators to care coordination. They identified 6 areas of focus for policy and practice improvement: identify and record information on family caregivers (as this information is often missing from patient records and caregivers may not self-identify); incentivize providers to engage with caregivers; invest in supports for caregivers; expand access for care coordinators to support caregivers; implement caregiver training programs and develop and improve access to technologies that improve caregiver-provider information exchange.
Policy implications
Several barriers identified in this study are related to policy or systemic constraints, particularly in the context of co-client and co-worker roles, given limited resources for caregivers and fragmented care contributing to what has been termed the structural burden of caregiving [
40]. In Germany [
41], where there is a deep-seated culture of familial care ([
42], p.123), government policies and programs recognize caregiving as a form of service substitution and provide dedicated resources for caregivers. This includes a cash benefit which, though minimal, offers a strong financial incentive for informal care ([
43], p.39) so that even after two decades, the majority of the elderly continue to choose cash payments over in-kind services [
44]. As such, caregivers are treated in many respects as co-workers, earning income and receiving social benefits in recognition of their contribution. However, from the perspective of caregivers in this study, similar benefits would go a long way in alleviating some of the most common challenges of being a co-worker, and, in some ways, a co-client.
Similar policy changes in Canada are emerging. In 2014, the Compassionate Care Benefit was introduced for caregivers of people with a serious medical condition who are in their last 6 months of life [
45]. Several federal and provincial tax credits also currently exist for caregivers of children and adults with medical conditions and disabilities [
46]. However, these financial aids provide only short-term relief and many caregivers are unaware of their eligibility and do not know how to access these supports [
4]. Further, in 2011, the Manitoba government instituted the Caregiver Recognition Act, becoming the first Canadian province to formally recognize and commit to increased support for caregivers [
47]. Such policy change is necessary, but without changes in how healthcare professionals and organizations value and integrate caregivers as members of the care team, it is insufficient in addressing the barriers experienced by caregivers across their various roles. In the more recent context of the COVID-19 pandemic, the role of caregivers as co-workers and as a co-resource in care has been made abundantly clear, stimulating advances in policy and practice that acknowledge them as ‘essential partners in care’ given evidence of the consequences of interference in their contributions at home and within institutions [
48].
Conclusions
In conclusion, our analysis provides further evidence that caregivers continue to feel invisible and lack appropriate support for their multiple roles [
6,
49]. This is despite promising changes in policy and practice to support caregivers in certain jurisdictions [
50]. We have suggested an additional role, that of ‘care coordinator’, be formally recognized in designing such supports for those navigating complex and fragmented care. A deeper understanding of the different roles and challenges associated with caregiving can contribute to the design and implementation of policies and services that would support their contributions and choices as integral members of the care team.
Listening to caregivers’ experiences can help us understand and address their needs to optimize experiences for the care recipient as well as for the caregiver. We heard that caregivers are largely unrecognized co-workers and care coordinators (who should also be cared for as co-clients), while the system relies on them as a ‘natural’ resource.
In rethinking our social contract with caregivers, we can draw upon emergent research, progressive policies and innovative practices to recognize their critical roles in human and economic terms within healthcare systems.
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