Caregivers are people – family, friends, neighbours – who provide critical and often ongoing personal, social, psychological and physical support, assistance and care without pay, for family members and friends in need of support due to frailty, illness, disease, physical or cognitive or mental disability or end of life circumstances (The Change Foundation, 2016).
Sinha (2013) indicates that “caregiving by family and friends is often integral to maintaining the health and well-being of Canadians living with chronic health conditions, disabilities or aging needs (p.4)”. Tally & Crews (2007) suggest that “caregiving has become an issue that affects the quality of life for millions of individuals and demands attention from every community (p. 224)”.
According to Statistics Canada, an estimated 8.1 million Canadians provided care to a chronically ill, disabled, or aging family member or friend in the past 12 months (Sinha, 2013, p. 4). In Ontario it is estimated that 3.3 million or 29% of the provincial population, are family caregivers (The Change Foundation, 2016,p.11). With increasing life expectancy of an aging population and persons living with chronic conditions and/or disability, the caregiving role is essential and is becoming longer term and more complex (Tally & Crew, 2007).
There are a number of contributing factors for this including the health of the population and the evolution of the health care system. We live in an era where almost 80% of Ontarians over the age of 45 have a chronic condition and of those, approximately 70% live with two or more chronic conditions (MOHLTC, 2008). Historically and disproportionately our health system has been designed to focus on acute illness rather than chronic disease prevention and management.
Our current challenge within the healthcare system in Canada is to ensure sustainability with the recognized need to do more with less while maintaining quality and improving health outcomes. The focus is on moving to support people in the community and/or through outpatient services delivery. These changes have supported the health system to begin to reduce the costs associated with some health services and hospitalization and has benefited patients as it allows one to remain at home or to access services in their community (Turcotte, 2013).
However, as Mikkonen & Raphael (2010) remind us, the Canadian Health Act requires provinces to provide “medically necessary” services, which mainly applies to hospital and physician services but how the other components of health care are enacted by the provinces is variable. There is not a universal or Canada wide approach to the ‘supplemental’ healthcare services, such as prescription drugs, dentistry, home care or long-term care (CFHI, 2014).
This variability in approach has resulted in the greater need for and reliance on a caregiver role (Tally & Crew, 2007), from both a health and economic standpoint. The economic impact of the caregiver role to the health system is reported at a conservative estimate of 25 billion annually (CIHI, 2010). However, there are also additional health implications that need to be explored.
Tally & Crew (2007) pose the question about the public health implications of caregiving, highlighting the challenges of the role and the impacts to the health of the caregiver of prolonged caregiving. They also recognize that it is important to understand who the caregivers are, the differences in vulnerability that might exist amongst individual caregivers and the need for a response (Tally & Crew, 2007).
The social ecological model (SEM) provides a lens through which one could begin to understand the complexities of caregiving. This model emerged from ecological systems theory which examines interactions between people and their environments (Bronfenbrenner, 1979). The model emphasizes multiple levels of influence and the idea of the interconnectedness of behaviours and social environments (Glanz & Bishop, 2010). By applying the SEM concepts of individual, interpersonal, organizational, community and policy, one can begin to understand the multilevel influences on health of the caregiver. I was unable to find a reference that had applied SEM to caregiving. I created an overview
of the factors (Glanz & Bishop, 2010) and have highlighted a few examples below.
The individual factors of the caregiver are important to understand and could include genetics, gender, income, age, education, personal health and employment status. When reviewing the list there are several factors that come together to influence the health of the caregiver.
Tally & Crew (2007) note that “in the past, the overwhelming majority of caregivers were women who were not employed outside the home (p.224)”. Today, this has shifted with woman making up 50% of the workforce (Tally & Crew, 2007). In Canada, 53% of the caregivers are woman and 47% are men and 60% of caregivers are in paid employment (Sinha,2013,p.15).
Family caregivers vary in age, with the largest proportion (42%) between the ages of 45 and 64 years with an additional 11% over the age of 65 (The Change Foundation, 2016).
There are financial impacts of caregiving that include lost days at work, reduced household income, increased expenses such as purchasing equipment, transportation costs and/or arranging private services (Sinha, 2013, p.16). Thirty-seven percent (37%) of caregivers in Ontario report an income below $40,000 (The Change Foundation, 2016, p. 30) and 1 in 5 caregivers receives some form of financial support with the likelihood of this directly related to the number of hours spent in caregiving role (Sinha, 2013, p.16).
See Figure 10 Caregiver Personal Income (The Change Foundation, 2016, p.3)
There are personal health implications to caregiving. Many people acknowledge the benefits for both the care receiver and the caregiver, however, there are challenges as well (CIHI, 2010). Approximately half of Ontario’s caregivers acknowledge that providing care for aging family members is stressful (The Change Foundation, 2016, p.47). Sinha (2013) noted that the larger the number of hours one provided, the higher the level of stress and the worse level of health that the caregivers reported (p.13). Stress is one of the main contributors to ill health and chronic disease (The Change Foundation 2016, P. 47) for caregivers.
At an interpersonal level, factors such as culture, family relationships, social supports and neighbours can influence the health of caregivers. The interpersonal component is an important aspect as many caregiver relationships are between family members. It is estimated that the 84% of caregivers are providing care to family members and 13% are caring for a friend, colleague or neighbour (The Change Foundation, 2016).
It was noted that cultural norms, ethnicity and family structures had different influences on the caregiver role. The American Psychological Association (2018) reports that rates of caregiving vary by ethnicity and that cultural perspectives of caregiving differ across ethnic groups and impact caregiver experiences. In addition family structures and proximity to family members has changed over the years (Donelan et al, 2002). Census data from 2000 in US showed that 18% of the population moved in the past year (Donelan et al, 2002). This mobility can mean that, in some instances, family members are less likely to be living close by and that people may not know their neighbours to the same extent (Donelan et al, 2002).
In Ontario, there are differences for the proximity of caregivers to care receivers in urban and rural settings. In rural settings, 82% of caregivers live in the same household as care receiver (The Change Foundation, 2016, p. 28). In urban settings, 68% of caregivers live in the same household with 30% of caregivers traveling 10 minutes to more than three hours (The Change Foundation, 2016, p28).
Caregivers experience impacts to their personal and social supports. The time spent caregiving can reduce the time spent with other family members, such as spouse and children and reduce family responsibilities as well as impacting their participation in social activities (The Change Foundation, 2016). The impacts of the reduction in time or loss of social activities and personal relationships, can result in emotional stress, feelings of isolation or of being overwhelmed (The Change Foundation, 2016).
At an organizational level there are health care delivery approaches, practices and policies that exist that influence the caregiver.
The health care system has been mainly structured around the business day, with most services occurring Monday to Friday. Evidence of this is widely observed through viewing business hours of primary care, out-patient clinics offered at hospitals and many community services. This structure has an impact on patients and caregivers as two of the primary activities completed by caregivers includes scheduling appointments and transportation (The Change Foundation,2016). Often caregivers find themselves transporting and attending appointments, which occur during work hours. The practices and policies of the caregiver’s employers can impact their ability to fulfill these caregiving activities.
There have also been changes to how health care professionals and support services provide care which has resulted in the reliance on caregiver support. Some models of care delivery have been modified to a consultative approach or teach and release approach where skills are taught to the patient and/or a caregiver. Examples include but are not limited to in-home exercise programs, assistance with wound care and medication management (The Change Foundation, 2016). Even for those people receiving home care services in Ontario, only 2% manage without the support from a caregiver (CIHI, 2010, p.15).
At a community level, the physical environment can have impacts on the caregiving role. The availability and accessibility of the community infrastructure including access to parks, recreation, stores and transportation, can impact the caregiver and the completion of their caregiving activities.
Transportation was identified as one of the key activities provided by caregivers (Sinha,2013). Wiilams et al (2002) noted in their study that low-income caregivers report greater challenges with transportation including affordability and physical accessibility (p.289). These transportation challenges impacted not only their caregiving activities but also their participation in personal activities. Transportation challenges were identified as a barrier for the caregiver who may want to participate in leisure activities, personal relationships or attend activities that support their ability to cope (Williams et al, 2002, p289).
At a policy level, the role of caregiving has gained recognition over the past years. There is legislation, policies and programs to support caregivers at the federal and provincial levels in Canada.
The Change Foundation (2016) describes two categories at the legislative level: 1) formal recognition and 2) employment and financial supports (p.4). Most provinces have a formal policy that recognizes family caregivers and have programming around employment and financial supports (The Change Foundation, 2016). See this summary of legislation and policies for caregivers by jurisdiction (The Change Foundation, 2016, p. 22).
In Ontario, with the introduction of the Excellent Care for All Act and the supporting role of Health Quality Ontario, there are clear requirements to strengthen the delivery of high quality patient care (MOHLTC, 2016) of which patient and caregiver experience is an important component. Health care organizations and the health system are focused on improving the care experience for patients and caregivers.
Watch video from HQO (2018) – This video describes a personal experience of a caregiver.
Exploring caregiving through the social ecological model provides insights into the factors influencing health of caregivers. It is important to note that a sustainable health system and the well-being of many individuals rely on informal caregivers (CIHI, 2010). This means that understanding and caring for the caregiver is an important consideration for health system strategy, policy and programming.
References
American Psychological Association (2018) Cultural Diversity and Caregiving Retrieved from http://www.apa.org/pi/about/publications/caregivers/faq/cultural-diversity.aspx
Bronfenbrenner,U. (1977) Toward an experimental ecology of human development. American Psychologist, 32(7), 513-531 Retrieved from http://psycnet.apa.org/fulltext/1978-06857-001.pdf
Canadian Foundation for Healthcare Improvement (2014) Healthcare Priorities in Canada: A Backgrounder Retrieved from https://www.cfhi-fcass.ca/sf-docs/default-source/documents/harkness-healthcare-priorities-canada-backgrounder-e.pdf
Eckenwiler, L. (2007) An Ecological Framework for Caregiving. American Journal of Public Health, November 2007, Vol. 97, No.11 (letter) Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2040359/
Eckenwiler, L. (n.d.) Long term care & migrant health workers: considering responsibilities. Global Studies Review Retrieved from http://www.globality-gmu.net/archives/2040
Donelan, K., Hill, C., Hoffman, C., Scoles, K., Feldman, P., Levine, C., & Gould, D. (2002). Challenged To Care: Informal Caregivers In A Changing Health System. Health affairs (Project Hope). 21. 222-31. 10.1377/hlthaff.21.4.222. Retrieved from https://www.researchgate.net/publication/11261936_Challenged_To_Care_Informal_Caregivers_In_A_Changing_Health_System
Glanz, K. & Bishop, D. (2010) The role of behavioural science theory in development & implementation of public health interventions. Annual Review of Public Health, Volume 31, p.399-418 Retrieved from https://www.annualreviews.org/doi/abs/10.1146/annurev.publhealth.012809.103604
Health Quality Ontario (2018) The Reality of Caring - Carole Ann: Doing it all on her own (video) Retrieved from http://www.hqontario.ca/System-Performance/Specialized-Reports/Caregiver-Distress-Report
MOHLTC (2008) Preventing and Managing Chronic Disease: Ontario’s Framework Retrieved from http://www.health.gov.on.ca/en/pro/programs/cdpm/
Sinha, M.(2013) Portrait of Caregivers, 2012. Statistics Canada Catalogue no. 89652X − 00. Ottawa: Minister of IndustryRetrieved from https://www150.statcan.gc.ca/n1/pub/89-652-x/89-652-x2013001-eng.htm
Tally, R. & Crews, J (2007) Framing the public health of caregiving. American Journal of Public Health. 97 (2) 224-228. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1781412/
The Change Foundation (2016) Legislations Supporting Family Caregivers in Canadian Jurisdictions and selected International Jurisdictions. Retrieved from http://www.changefoundation.ca/caregiver-resource-hub/legislation-supporting-caregivers/
The Change Foundation (2016) A profile of family caregivers in Ontario Retrieved from http://www.changefoundation.ca/profile-of-family-caregivers-ontario/
Turcotte, M. (2013) Family Caregiving What are the consequences Statistics Canada Retrieved from https://www150.statcan.gc.ca/n1/pub/75-006-x/2013001/article/11858-eng.htm
Williams, A., Forbes, D., Mitchell, J., Essar, M. & Corbett, B. (2003) The influence of income on the experience of informal caregiving: policy implications. Health Care for Women International p. 280-291. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/12746001