Who Will Care For Me?

For the past three months, I have had the opportunity to participate in the course Foundations of Health Systems in Canada. This has provided an opportunity to explore factors influencing the health of Canadians within the context of the Canadian Health system. As we have progressed through the Foundations of Health, we have explored various topics including the definition of health, determinants of health, chronic disease, multi-level influences on health, vulnerable populations and future directions of health care. The topic that I chose to focus on applying these concepts to is the role of the informal caregiver in the health system.

Health

It all begins with health. In 1948, the World Health Organization (WHO) put in place a definition that described health as a state of complete physical, mental and social well-being and not merely the absence of disease and infirmity (WHO, 2018). In 1986, the WHO further enhanced the definition indicating that health is a resource for everyday life emphasizing concepts of social, personal and physical capacities (WHO, 2009).

While a strong health care system that can respond to medical needs is required, there is a need to focus on health promotion and wellness in order to prevent and/or delay the needs for formal health services (OACCAC, 2013). The caregiver role has been recognized as integral to the health and well-being of Canadians living with chronic health conditions, disabilities or aging needs (Sinha, 2013, p.4)

Canada Health Act

The Canada Health Act was enacted to ensure universal access to medically necessary services with the focus on hospital and physicians services (Mikkonen & Rapahel, 2010). Provinces and territories are responsible for responding to other health care needs and this is done with variability. Home care, Long Term Care and pharmacare services are primarily funded under provincial plans with additional supplemental coverage provided through extended benefits plans or private insurance plans (Beatty & Bedhal, 2011).

The realities of the Canadian health system is that it is a system built from a series of components enabled by legislation and regulation, policies and practices, programs and services to respond to the needs of the population. The current focus in Ontario is on doing more with less with a current tension between care needs, available resources and fiscal realities. As people spend less time in hospital and more time in community managing their care, the support from an informal caregiver has emerged and remains as an essential component.

Determinants of Health

The determinants of health are acknowledged as a key influence on health. The Government of Canada (2018) defines the determinants of health as the broad range of personal, social, economic and environmental factors that determine individual and population health.

Research suggests that income is one of the most impactful of all social determinants of health (Mikkonen & Raphael, 2010, p.13). Economic factors test the universality of the Canadian health system as income disparities create inequitable access to health services that are not covered by public funding (OACCAC, 2013). Individual decisions related to health care will be affected by financial factors. In Ontario it is estimated that 20-30% of individuals do not have supplemental or employer insurance (OACCAC, 2013, p.3). These economic factors impact the caregivers and their health. There are financial impacts to caregiving that include expenses related to services, equipment, supplies and transportation, lost days at work and reduced income (Keefe, 2011, p.7; Sinha, 2013, p.16).

In recent years there has been introduction of legislation, policies and programs to support caregivers. However, some of the support for family caregivers is linked with employment. For example the Employment Insurance Act (1996) and the Employment Insurance regulations entitle Canadian employees to Compassionate Care benefits (The Change Foundation, 2016, p.6). In Ontario the Employment Standards Act (2000) has benefits provision around Family medical leave, Critically ill child leave and Family Caregiver leave (The Change Foundation, 2016, p.11). One of the key pieces here, is the caregiver must be employed to access these supports. Sixty percent (60%) of caregivers are in paid employment (Sinha, 2013, p.15), which means there are a number of family caregivers who would not be able to access these supports.

Multi-level Influence

In my earlier blog, Caregivers – The Lynchpin of Health Care, caregiving was explored using the Social Ecological Model (SEM) (CDC, 2013). It highlighted levels influence at the individual, interpersonal, organizational, community and policy levels (CDC, 2013). The realities and challenges of the caregiver was illuminated through this process It reinforced that understanding and caring for the caregiver is an important consideration for health system strategy, policy and programming(Tally & Crew, 2007).

Chronic Conditions

Statistics Canada (2016) reports that 50% of individuals age 50 and over are living with one or more chronic condition. The largest proportions of caregivers (42%) are between the ages of 45 and 64 years of age (The Change Foundation, 2016). Based on this information, many caregivers are living with a chronic condition.

Eighty-four percent (84%) of caregivers are providing care to family member with 47% providing care to parents or parent in law (The Change Foundation, 2016, p.36). When asked the age of the care recipient 30% of caregivers replied they care for a person 55 years and older (The Change Foundation, 2016, p.37). Therefore, caregivers are living with a chronic condition(s) while supporting a person who is living with chronic conditions.

Vulnerable populations – Indigenous Seniors

When progressing through the exploration of health, determinants of health, chronic disease and the mutli-level influences on health one can begin to see individuals and/or populations that are vulnerable. Vulnerable populations can be individuals at greater risk due to demographic, socioeconomic, geographic, physical and/or mental conditions and/or social or historical injustice (Government of Canada, 2011).

Caregivers are a vulnerable population and are typically supporting a vulnerable person including Indigenous seniors.

Our indigenous communities face challenges with an aging population and caregiving. Though Parrack & Joseph (2007) remind us that not all indigenous communities face the same challenges and those factors such as geographic, economic, social and cultural elements need to be considered (p.107).

The number of Indigenous seniors is increasing (Parrack & Joseph, 2007) and the health of the aging population impacts the caregiving required from family (Parrack & Joseph, 2007, p.107). As chronic disease is more prevalent among indigenous individuals, the likelihood that caregivers and seniors are both living with a chronic condition is high (Parrack & Joseph, 2007).

Many of the Indigenous communities in Canada are located in rural and remote northern regions, with fewer health care professionals, services and facilities (Beatty & Bedhal, 2011). This can result in seniors not being able to access needed medical services or supports in their community and can result in a higher reliance on support from caregivers (Parrack & Joseph, 2007). In order to access services some Indigenous seniors may be required to move to urban communities. This places the Indigenous senior in a further position of vulnerability as these services do not reflect their culture and they are now away from family caregiver and community supports (Beatty & Bedahl, 2011).

Future Directions

The trends with aging of Canadians have been well documented (Statistics Canada, 2016). In 2011, the first baby boomers turned 65 and at that time 14% of the population was 65 and over (Statistics Canada, 2016). By 2031, 23% of the population will be 65 and over (Statistics Canada, 2016) and will make up a larger share of the population than the younger generations (OACCAC, 2013). In the 2006 Canadian census, it was reported that 43% of households in Canada have no children (OACCAC, 2013, p.10) with an estimate that close to “24% of elderly women may be without a surviving child by 2031” (Keefe, 2011, p.12).

In this demographic scenario with the increase in seniors and the decline in adult children, there will be an impact on the availability of informal caregivers (Keefe, 2011).

Yet we know that one in four or 27.8% of caregivers report the reason for providing care is related to aging (Statistics Canada, 2016). With a decline in available caregivers, seniors need to rely more on available formal health care services (Keefe, 2011). However, it is estimated that informal “caregivers provide 70% of care for patients residing in the community” (OACCAC, 2013, p.2).

In addition, there is a current health human resource shortage and aging health care workforce. In 2011, the average age of physicians was 53 and the average of nurses was just over 45 years of age (CIHI, 2016). The average age of Personal Support Workers working in community care is 45 years (Lum et al, 2010).

Limited availability of informal caregivers will present a challenge to individuals, communities and the broader health system, all of whom currently rely on this caregiver resource.

There is a need for innovative approaches to care delivery that includes optimizing health human resources and supports for patients and caregivers. Some of these models include the use of technology to enable care delivery.

One example of an innovative approach that has been used in Ontario is eShift. eShift was developed in response to a nursing shortage in the community for patients living with complex health conditions. eShift is an approach where the use of technology was used to spread limited specialized health human resources across a number of patients while maintaining supports for patient and caregiver (MOHLTC, 2014). This secure web-based technology enables a registered nurse to remotely care for multiple patients in their homes, with the support of enhanced personal support workers (Ziedenberg,2015). This approach facilitated effective communication between the health care team, the patient and family caregiver (Daniel, 2017) including support with patient & caregiver education.

The aging trends in Canada will require us to look beyond traditional approaches to new models of care provision that responds to patients and family caregivers and supports the health system.

Conclusion

The importance of caregiving must be recognized. The health system needs to respond to and plan around the present and future needs of patients and informal caregivers. As this recognition has grown over the past years, research has begun to identify elements of a system response and potential policy changes. Concepts that have been considered include caregiver supports, formal training, access to formal care providers, enhanced communication and information access and financial supports (Donelan et al, 2002).

As changes are considered, it is important to seek to understand who the caregivers are and to engage caregivers in the health system and policy development process (The Change Foundation,2016). The time is now – this cannot wait.

References

Beatty, B. & Bedhal, L. (2011) Health care & Aboriginal seniors in urban Canada: Helping a neglected class The International Indigenous Policy Journal, 2 (1). Retrieved from https://ir.lib.uwo.ca/cgi/viewcontent.cgi?article=1024&context=iipj

Canadian Home Care Association (CHCA) (2011) Home Support Workers: HR Strategies to meet chronic care needs of Canadians Retrieved from http://www.cdnhomecare.ca/content.php?doc=33

Canadian Institute for Health Information (CIHI) (2016) Health Workforce Retrieved from https://www.cihi.ca/en/health-workforce

Centres of Disease Control & Prevention (CDC) (2013) Social Ecological Model Retrieved from https://www.cdc.gov/cancer/nbccedp/sem.htm

Lum, J., Sladek, J., Ying, A. & Holloway Payne, L. (2010, December) Ontario Personal Support Workers in Home and Community CRNCC/PSNO Survey Retrieved from https://www.ryerson.ca/content/dam/crncc/knowledge/infocus/factsheets/InFocus-Ontario%20PSWs%20in%20Home%20and%20Community%20Care.pdf

Daniel, D. (2017, August 30) CC2H program keeps patients at home connected to care-givers Canadian Healthcare Technology Retrieved from http://www.canhealth.com/2017/08/30/cc2h-program-keeps-patients-at-home-connected-to-care-givers/

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

Flood, C. M. & Thomas, B. P. (2016). Modernizing the Canada Health Act. Ottawa Faculty of Law Working Paper No. 2017-08. Retrieved from https://ssrn.com/abstract=2907029

Government of Canada. (2018). Social determinants of health and health inequalities. Retrieved from https://www.canada.ca/en/public-health/services/health-promotion/population-health/what-determines-health.html

Government of Canada (2011) Vulnerable Populations Retrieved from https://www.canada.ca/en/health-canada/services/environmental-workplace-health/environmental-contaminants/vulnerable-populations.html

Keefe, J. (2011) IRPP Study: Supporting Caregivers and Caregiving in an Aging Canada Retrieved from http://irpp.org/research-studies/supporting-caregivers-and-caregiving-in-an-aging-canada/

Mikkonen, J., & Raphael, D. (2010). Social Determinants of Health: The Canadian Facts. Toronto: York University School of Health Policy and Management. Retrieved from http://www.thecanadianfacts.org/

Ontario Ministry of Health & Long Term Care (MOHLTC) (2014) Excellent Care For All eShift – Using Technology to Improve Access to Care Retrieved from http://www.health.gov.on.ca/en/pro/programs/ecfa/action/community/com_eshift_tool.aspx

Ontario Association of Community Care Access Centres (OACCAC) (2013) Health Comes Home: A conversation about the future of care Part 1 Retrieved from http://hssontario.ca/News/Lists/PublicationsDocument/HealthComesHomePart1.pdf

Sinha, M.(2013) Spotlight on Canadians: Results from the General Social Survey Portrait of Caregivers, 2012. Statistics Canada Retrieved from https://www150.statcan.gc.ca/n1/pub/89-652-x/89-652-x2013001-eng.htm

Statistics Canada (2016) Research highlights on health and aging. Retrieved from https://www150.statcan.gc.ca/n1/pub/11-631-x/11-631-x2016001-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/

World Health Organization (2018) Constitution of WHO: Principles Retrieved from http://www.who.int/about/mission/en/

World Health Organization (2009) Milestones in Health Promotion Retrieved from http://www.who.int/healthpromotion/Milestones_Health_Promotion_05022010.pdf

Zeidenberg, J. (2015, September 29) Innovative eShift platform helps nurses monitor home-care patients Canadian Healthcare Technology Retrieved from http://www.canhealth.com/2015/09/29/innovative-eshift-platform-helps-nurses-monitor-home-care-patients/