The voices of family caregivers of seniors with chronic conditions: a window into their experience using a qualitative design

Abstract

Background

Family caregivers are the backbone of the healthcare system. Over time, caregiving takes a tremendous toll on the caregiver. This is particularly true for caregivers who (1) provide >21 h of care/week, and/or (2) support those experiencing depression, cognitive decline, aggressive behaviours, and life-limiting conditions requiring complex care. Many caregivers face deteriorating physical and mental health, social isolation, family conflict, and job loss. Caregivers often have little energy or time to access resources and their experiences with the healthcare system, healthcare professionals and service agencies can either buoy them through challenging times, or contribute further to their distress.

Objective

This project aimed to hear the voices of family caregivers; their challenges, struggles, joys, and motivation for persevering through hardship, as well as their recommendations regarding education, resources, and supports that might enhance their resilience.

Methods

This community engagement research project utilized an ethnographic, qualitative approach involving three, 2-h focus groups that were analyzed using thematic analysis.

Findings

Caregivers identified barriers to resilience, including demands on their time, changing roles and responsibilities, challenges of learning about medical conditions, their own emotional responses, financial strains, changing family dynamics, and personal health. Caregivers also identified several facilitators to resilience, including motivations for caregiving, sense of purpose and validation, spirituality, emotional experiences, and coping strategies.

Conclusion

Caregivers recommended that educational opportunities, including increasing health care providers education concerning dementias, increased access to resources, system navigators, financial supports, political advocacy, and a more responsive caregiver centered system would support family caregiving.

Background

Canada’s population is aging and the role of family caregivers is becoming increasingly important in providing necessary support. It is anticipated that the proportion of individuals aged 65 and over will increase from 15 % up to 28 % by 2063 and those 80 and over will grow from 1.4 million up to 4.9 million by 2044, when they will account for 10 % of the population (Bohnert et al. 2015). More Canadians are also living with chronic diseases, with 33 % of those aged 80 years and older having four or more chronic conditions, including dementia (Butler-Jones 2010). Individuals living with dementia in 2011 accounted for over 700,000 Canadians aged 65 years and older and may increase to 1.4 million by 2013 (Alzheimer Society of Canada 2012). Family and friends are often relied upon to help these individuals continue to be active and remain connected to their communities (Eales et al. 2015).

Family caregivers, recognized as the backbone of the health care system (Butler-Jones 2010; Kitts 2012; Sinha 2012), provide informal unpaid care (World Health Organization 2012). In Canada, the costs of unpaid caregiving have recently been estimated at $25 billion (Hollander et al. 2009).  A 2012 survey (Sinha 2012) found that, of the 8.1 million Canadian carers (28 % of population), 44 % were between the ages of 45 and 64 years, 10 % provided more than 30 h of support a week, 60 % continued to work while providing care, and 25 % were simultaneously caregiving and child rearing. Furthermore, approximately 50 % of family caregivers cared for seniors with health conditions (Turner and Findlay 2012) and close to half a million supported a person with dementia (often a parent or in law) (Eales et al. 2015). The overwhelming majority of caregivers (89 %) offered support for a minimum of one year, with 50 % doing so for at least four years (Sinha 2012). The care provided by family members includes a variety of activities. Most frequently, they provided transportation (73 %; e.g. running errands, shopping, attending medical appointments, participating in social events), performed tasks in the care partner’s home (52 %; e.g., preparing meals, cleaning, laundry), and assisted with house maintenance or outdoor work (45 %). Support for personal care and medical treatments varied, with caregivers offering weekly (66 and 63 %, respectively) or daily (both 34 %) support. Additionally, over 88 % of caregivers provided emotional support, including spending time and talking with the care partner, and 96 % visited or called to ensure that the care partner was okay (Sinha 2012).

Supporting family caregivers has become a national public health priority given their essential role in the healthcare system (Hollander et al. 2009). The Health Council of Canada’s (Kitts 2012) “seniors in need, caregivers in distress” report identified the need to support caregivers and recognize their indispensable contribution in the sustainability of the health care system. Caregivers require support to foster resilience (adapt well in the face of adversity) and ensure that they can continue to provide care while maintaining their own wellbeing. While the majority of caregivers report being in good, very good, or excellent physical and mental health, caring can take a toll on caregivers and leave them increasingly overburdened (Butler-Jones 2010; Eales et al. 2015; Kitts 2012; Sinha 2012). Caregivers are at an increased risk of significant physical, emotional, and financial burden if: (1) they provide more than 21 h per week of care; (2) care for persons with depression, cognitive decline, behavioural change; or (3) care for persons with terminal conditions (Butler-Jones 2010; Kitts 2012; Sinha 2012; Hollander et al. 2009; Canadian Institutes of Health 2009). The resultant stress can lead to deterioration of their health, social isolation, loss of income, and family conflict (Kitts 2012; Stajduhar et al. 2010; Dumont et al. 2009). The strain on family caregivers is anticipated to intensify as a result of the aging population (Eales et al. 2015; Smetanin et al. 2010; Dudgeon 2010).

Inclusion of evidence-informed supports for family caregivers should be an important part of any regional, provincial, national, or international strategy (Parmar et al. 2014). There is, however, a gap between what is known of the caregiver experience and what is most likely to offer support. A better understanding of the experience of caregivers and ways to foster their resilience is needed. This project aimed to hear the voices of family caregivers—their challenges, struggles, joys, and motivation for persevering through hardship, as well as their recommendations regarding education, resources, and supports that might enhance their resilience. To that end, and as part of a pre-conference activity to a CIHR planning conference “Supporting Family Caregivers of Seniors” held in Edmonton in April 2014, three 2-h focus groups were held with family caregivers residing in the Edmonton area. The anticipated outcomes of the focus groups included acquiring a greater understanding of the caregiver experience, identifying what is needed to improve service provision and caregiver support, and research priorities. The outcomes of the focus group discussions were largely centred on the experience of caregivers of seniors with complex needs. The purpose of this paper is to: (1) describe the experiences, challenges, facilitators, and rewards identified by family caregivers of persons with complex needs, and (2) outline recommendations regarding education, resources, and support to increase caregiver resilience that could inform research priorities.

Methods

This community engagement research project utilized an ethnographic, qualitative approach involving focus groups and thematic analysis.

Participants

Participants were invited to attend one of three focus groups at the invitation of the Alzheimer Society—Alberta and Northwest Territories and the Alberta Caregivers Association. Flyer/poster solicitation and invitations were utilized to recruit participants who were known to the organizations. Overall, 23 family caregivers of persons with complex needs residing in the Edmonton area participated in one of three focus groups each comprised of 7–8 caregivers.

The family caregivers indicated that they supported between 1 and 4 individuals with complex needs (hereafter, ‘care partners’): 1 care partner (n = 16), 2 care partners (n = 5), and 4 care partners (n = 2). Years of caregiving ranged from 1 to 12 years, with an average of 5.2 years per care partner. Female focus group participants (n = 15) provided a total of 138.5 years of caregiving to husbands (n = 7), fathers (n = 4), mothers (n = 8), fathers-in-law (n = 3), and mothers-in-law (n = 3)—an average of 5.54 years per care partner. Male participants (n = 8) provided a total of 38.5 years of caregiving to wives (n = 4), mothers (n = 3), and fathers (n = 2)—an average of 4.28 years per care partner. The majority of focus group participants provided support to individuals over age 65, with primary diagnoses of dementia (n = 25), cancer (n = 3), Parkinson’s disease (n = 2), unspecified (n = 2), stroke (n = 1), and brain injury (n = 1).

Focus groups

Three 2-h focus groups were held with family caregivers on April 2nd and 3rd, 2014 at the Alzheimer Society and on April 4th, 2014 at the Alberta Caregivers Association in Edmonton. The focus groups were co-facilitated by 2 or 3 research team members with a minimum of 7 years experience working with seniors with complex needs and their caregivers. Focus group questions (see Table 1) captured various aspects of their experience, supports, and recommendations.

Table 1 Focus group questions for family caregivers

Focus group discussions were audio-recorded, professionally transcribed, and entered into NVivo 9 for coding and analysis by members of the research team (SBP, MJ, VT, JP). Standardized coding techniques, using an adapted version of Roper and Shapira’s (Roper and Shapira 2000) approach, were utilized to identify patterns and emergent themes (Roper and Shapira 2000). Notes collected during the focus groups tracked themes as they emerged throughout the discussion. Notes from the second day of focus groups did not yield new themes, thus resulting in data saturation. To ensure the integrity of the research process, four aspects of trustworthiness, detailed in Lincoln and Guba’s model (Lincoln and Guba 1985) were addressed throughout the analysis processes: (1) promoting credibility, (2) promoting transferability, (3) ensuring dependability, and (4) confirmability (through triangulation with stakeholders). Authors met to discuss, validate, and come to consensus around themes and five focus group participants validated the findings. The study received ethics approval from the University of Alberta Health Research Ethics Board-Health Panel.

Findings

Themes that emerged from the data analysis included barriers, facilitators, and recommendations in support of caregivers. These findings are presented below.

Caregiver experience: barriers to resilience

Many caregivers experience significant stress due to shifting roles and responsibilities, demands on their time and resources, financial instability, changing family and social dynamics, deterioration of health, emotional strain, and challenges working with the healthcare system. An elaboration of these themes with supporting quotes can be found in Table 2.

Table 2 Caregiver experience: barriers compromising resilience

Caregiver experience: strategies and resources that facilitate resilience

Study participants identified many factors that support them as they provide care to their care partners. These included: personal attributes (motivations for caregiving, sense of purpose and validation, spirituality, emotional experiences, and coping strategies), relationship with the care partner, relational supports, and system supports. An elaboration of these themes with supporting quotes can be found in Table 3.

Table 3 Caregivers experiences: strategies and resources that facilitate resilience

Caregiver experience: recommendations and priority research areas

The focus group participants made recommendations as to ways to better support them in their caregiving, including: supports and services, caregiver education, Health Care Professional (HCP) education, more and better access to resources, system navigators, a more responsive caregiver centered system, financial supports, and political advocacy. An elaboration of these themes with supporting quotes can be found in Table 4.

Table 4 Caregivers experience: recommendations and priority research areas

Discussion

The purpose of this paper was to describe family caregiver perspectives regarding barriers to and facilitators of their resilience, as well as offer recommendations on how the health care system can better support them. Caregivers identified several barriers to resilience, including increasing demands on their time and resources, changing roles and responsibilities within the family, challenges to learning about their care partner’s medical condition(s), their own emotional responses to providing care, financial strains, changing family and social dynamics, and personal health. Caregivers also identified several facilitators to resilience, including their motivations for providing care, a renewed sense of purpose and validation, spirituality, positive emotional experiences, and coping strategies. Overall, caregivers recommended that educational opportunities, including increased education for health care providers concerning delirium and dementia, increased access to resources, system navigators, financial supports, political advocacy, and a more responsive caregiver centered system would support family caregiving.

Canadian statistics speak to the staggering amount of informal health services caregivers provide (Sinha 2012). The types of care and amount of time spent on caregiving activities of the respondents mirror those represented in the 2012 survey (Sinha 2012). Unfortunately, providing care for family members can have an overwhelming effect on caregivers. Often, caregivers find themselves in untenable situations that jeopardize their own health, finances, family relationships and overall wellbeing. Left unclear about their care partner’s diagnosis, its implications, and uncertain future, family caregivers very frequently feel voiceless and powerless amidst the incredible responsibilities placed on them. These sentiments have been echoed in several recent reviews of family caregiving from Poland and Asia (Domaradzki 2015; Park and Park 2015; Chan 2010). In order to sustain caregiver support, programs and services are needed to explicitly address the needs of family caregivers and provide them with necessary supports to foster resilience and honour their contribution to care recipients and the system.

To foster resilience, caregivers require access to a wide range of community services and resources, including education, training in emergency care specific to the care partner, and respite supports. Importantly, caregivers express a need to better understand the minutia and implications of their care partner’s diagnosis to better prepare for the future. Medical supports can provide the caregiver with information regarding the diagnosis, how to manage the evolving nature of the chronic condition, and advocate on behalf of the caregiver and care partner. In addition, respite services can offer the caregiver opportunities to engage in important family moments with their spouses and children. This can help alleviate guilt associated with missing important events, allow the caregiver to recharge, and enable them to attend to employment needs.

Caregivers noted that resilience is also fostered when emotional supports are provided, resulting in decreased distress, improved coping, and increased caregiver quality of life. Additional emotional support can also come from the care partner. Resilience was enhanced when caregivers had an opportunity to cherish moments shared with their care partner, with one caregiver stating, “[I]f I can get her to smile, my day is made.” Friends and family are also important sources of instrumental support. They can alleviate burden by taking on responsibilities of caregiving, including the management of finances, housework tasks, and transportation, for the benefit of the care partner and primary caregiver.

Caregivers related a number of recommendations that could foster a supportive environment during their caregiving journey. Caregivers noted that advocacy skills and knowledge of medical jargon could enhance their ability to effectively interact with healthcare professionals. One caregiver identified the need for, “assertive communication so that I could better deal with my husband and better advocate for him with healthcare professionals.” In addition to personal education, caregivers would like more training for healthcare professionals on delirium and early dementia recognition and intervention. This training could lead to earlier diagnosis of patients and more timely access to system and community resources in disease progression. Due to the difficulty navigating the healthcare system, caregivers desired access to a system navigator and professional advocates to help them access resources and advocate on the behalf of the caregiver and care partner. Greater awareness of the caregiver experience is foundational to determining interventions to address caregiver needs.

Limitations

This study reflects the results of a small sample of family caregivers of seniors with complex needs residing in one geographic area. Relatedly, participants self-selected to engage in the focus groups and provided information regarding their experiences as a caregiver. As a result, the discussion may be impacted and the findings may not be generalized across all family caregivers.

Conclusion

Strategies to better identify caregivers and their needs would be invaluable to policy and decision makers, clinicians, and researchers. Inclusion of both family caregivers and the care partner in care planning can positively affect the resilience of family caregivers. As caregiver resilience is influenced by the care partner’s disease process, family and social dynamics, physical, social, emotional, spiritual and financial needs, life experiences, and resources and services available in the system, it is important to address these so that family caregivers can continue to provide much needed support to care partners beyond what the system can offer. A better understanding of the experience of family caregivers can inform the design of public policies, programs, and interventions for care of individuals with complex needs. This research study enhances our understanding of the experience and needs of family caregivers and provides evidence of the great need for research in this area.