Who is caring for the caregiver?

Illustration by Daniela Casas for rehabINK.

Commentary

By Kristina Marie Kokorelias


Over the next 20 years, Canada’s aging population is expected to double (1). While an aging population reflects the significant advances in medicine that have prolonged the lifespan, it also signifies a substantial test for the healthcare system to meet the rising needs. However, caregivers are unwilling to wait and see whether healthcare services can pass the test for the health and well-being of their loved ones.

Across the continuum of care from hospital to the community, demand for rehabilitation services is inflated by an aging population with increased prevalence of multiple acute and chronic conditions (2) such as stroke, dementia, arthritis, and cardiorespiratory diseases (3). In turn, disabling conditions exacerbate the demands on caregivers including family, friends, and broader support networks. For individuals with complex physical, cognitive, and social challenges who are undergoing rehabilitation, having family caregivers is crucial to supporting their daily living needs after they leave the healthcare facility.

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Image source: Pixabay (Pexels)

Family caregivers serve numerous roles. Due to shorter hospital stays and limited planning for rehabilitation in the community (e.g., no offers of community-based support, no caregiver training), family caregivers take on new tasks that are complex and demanding (4). During the care recipient’s rehabilitation in the hospital or care facility, family caregivers are the critical source of social and emotional support, often prioritizing the care recipient’s health over their own (5).

However, once individuals return to community living, family caregivers become extensions of the healthcare system by performing medical and therapeutic tasks including the management of medications, support for activities of daily living (e.g., eating, bathing, dressing, toileting), and support of the care recipient to adhere to rehabilitation regimens (6,7).

Family Caregiving Is Indispensable Yet Personally Costly

Family caregiving is one of the most influential factors in a patient’s recovery from injury or illness (2, 8-10). In the 2002 report Building on Values – The Future of Health Care in Canada (11), the report’s commissioner affirmed that “home care could not exist in Canada without the support of social networks and informal caregivers.” However, the costs of relying on family caregiving is downloaded to the caregivers themselves and their families.

“Home care could not exist in Canada without the support of social networks and informal caregivers.” – Building on Values – The Future of Health Care in Canada (2002)

Ron Beleno spent ten years caring for his father who had Alzheimer’s disease and knows firsthand the essential role of caregiving: “I’m confident I saved the healthcare system by keeping and caring for dad at home with my knowledge of my dad’s preferences and his care needs.” Unfortunately, family caregivers rarely receive adequate training, preparation, or ongoing support from rehabilitation healthcare systems to ready them for their caregiving roles (12). Despite little-to-no training, 28% of Canadians provide in-home care to seniors (13).

Owing to the lack of guidance and support for caregivers, their physical and emotional health can decline (14) which threatens their ability to sustain the caregiving role. Caregivers must often advocate for their own training needs, as Beleno can attest: “If it wasn’t for my aggressive advocating and proactive care to get knowledge, support, and expertise from the rehab community such as occupational therapists and others in the field, I definitely would have crashed and burned years earlier.”

Image source: Kristina Marie Kokorelias. Kristina and Ron discussing caregiver experiences over some snacks.

Other possible negative consequences of caregiving include financial strain, sleep disturbance, and less socialization (13,15-17). Nira Rittenberg, a community-based occupational therapist with over 30 years of experience, believes that the healthcare system does not view caregivers as having specific training needs, “but the reality is that [caregivers] are the pillars of care for the client.” She adds that the healthcare system relies on caregivers to be directly involved in the provision of care such as performing transfers and providing mobility assistance.

“The reality is that [caregivers] are the pillars of care for the client” – Nira Rittenberg, Occupational Therapist

How to Care for the Caregivers

Preparing, training, and supporting caregivers should be the norm. The notion of educating and training caregivers is not new to the field of rehabilitation. The Guide to Physical Therapist Practice (17) introduces the concept of “patient caregiver education”, which involves a “process of informing, educating, or training patients/clients, families, significant others, and caregivers.” This form of patient/client-related instruction strengthens caregivers’ coping behaviours (18), enhances caregiver and patients’ ability to participate in decision-making (19), supports better transition across care settings (20), and results in better rehabilitation outcomes and return to community life (19).

There is also every motivation to maintain caregivers’ capacity to provide care since it may increase the likelihood that care recipients remain in the community (21). Greater caregiver capacity can help avoid unnecessary hospitalizations (22) and may improve recovery outcomes (23). Supporting caregivers is therefore not only important for care recipients, but also for the healthcare system in its entirety (29,30).

Strategies for supporting caregivers participating in rehabilitation care include counseling (24), home visits and socialization (25), respite care (26), and self-care support groups (27). Interventions with the most success combine various strategies, such as including both respite care and support groups (28). Seminal work by Sorenson and colleagues (26) also found that interventions designed for individual caregivers, rather than group interventions, were more effective in improving caregiver well-being. It is important to note that the type of support needed by caregivers often changes across the caregiving and rehabilitation trajectory (20).

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Image source: Westfrisco (pixabay)

Rehabilitation systems must therefore support caregivers in all stages of the rehabilitation process, from the onset of disability through to long-term rehabilitation in the community. As key players, rehabilitation professionals must engender a fundamental shift in their approach to collaborating with and supporting caregivers in all forms of rehabilitation (e.g., acute care, community rehabilitation). Rehabilitation professionals are best positioned to identify the changing needs of caregivers and to provide appropriate support, which will then translate into improved patient outcomes (23).

The least clinicians can do is to recognize and respect family caregivers’ crucial contributions to care. Clinicians are also encouraged to connect family caregivers with potential sources of support (e.g., support groups), provide them with concrete training on specific caregiving tasks, and refer them to potential sources of ongoing help. As Rittenberg explains, “It is my role to look at the whole family/care unit and see how I can educate, and practically train and emotionally support the caregiver.”

For these reasons, the healthcare system must provide clinicians with the requisite clinical training and time during treatment delivery to develop therapeutic relationships. Rehabilitation scientists should continue investigating the experiences of family caregivers across the rehabilitation trajectory to innovate interventions that enhance support provision, quality of life, and health outcomes for caregivers and care recipients.

“Incorporating caregivers into the rehabilitation system will ultimately be in the best interest of all of us.” – Nira Rittenberg, Occupational Therapist

As caregiver interventions are developed and implemented in rehabilitation settings, ongoing evaluation of their effectiveness should be conducted. The expansion of networks for scientists and clinicians to share best practice recommendations for including family caregivers as partners in care should also be a priority, for in Rittenberg’s words, “Incorporating caregivers into the rehabilitation system will ultimately be in the best interest of all of us.”

Acknowledgements

Featured illustration by Daniela Casas for rehabINK.

To refer to this article, it can be cited as:

Kokorelias KM. Who is caring for the caregiver? rehabINK. 2020;9. Available from: https://rehabinkmag.com

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References

  1. Landry MD, Jaglal S, Wodchis WP, Raman J, Cott CA. Analysis of factors affecting demand for rehabilitation services in Ontario, Canada: a health-policy perspective. Disability and Rehabilitation. 2008;30(24):1837-47.
  2. Ell K. Social networks, social support and coping with serious illness: the family connection. Social Science and Medicine. 1996;42(2):173-83.
  3. Young J. Caring for older people: rehabilitation and older people. BMJ. 1996;313(7058):677-81.
  4. Wee JY, Hopman WM. Stroke impairment predictors of discharge function, length of stay, and discharge destination in stroke rehabilitation. American Journal of Physical Medicine and Rehabilitation. 2005;84(8):604-12.
  5. Luker J, Murray C, Lynch E, Bernhardsson S, Shannon M, Bernhardt J. Carers’ experiences, needs, and preferences during inpatient stroke rehabilitation: a systematic review of qualitative studies. Archives of Physical Medicine and Rehabilitation. 2017;98(9):1852-62.
  6. Donelan K, Hill CA, Hoffman C, Scoles K, Feldman PH, Levine C et al. Challenged to care: Informal caregivers in a changing health system. Health Affairs. 2002 Jul;21(4):222-31.
  7. Chen L, Xiao LD, De Bellis A. First‐time stroke survivors and caregivers’ perceptions of being engaged in rehabilitation. Journal of Advanced Nursing. 2016;72(1):73-84.
  8. Tsouna-Hadjis E, Vemmos KN, Zakopoulos N, Stamatelopoulos S. First-stroke recovery process: the role of family social support. Archives of Physical Medicine and Rehabilitation. 2000;81(7):881-7.
  9. Martire LM, Lustig AP, Schulz R, Miller GE, Helgeson VS. Is it beneficial to involve a family member? A meta-analysis of psychosocial interventions for chronic illness. Health Psychology. 2004;23(6):599.
  10. Wallston BS, Alagna SW, DeVellis BM, DeVellis RF. Social support and physical health. Health Psychology. 1983;2(4):367.
  11. Romanow RJ. Building on values, the future of health care in Canada [Internet]. Saskatoon, Canada: Commission on the Future of Health Care in Canada; 2002 Nov. Available from: https://qspace.library.queensu.ca/bitstream/handle/1974/6882/BuildingOnValues.pdf?sequence=5
  12. Shewchuk R, Elliott T. Family caregiving in chronic disease and disability: implications for rehabilitation psychology. In: Frank RG, Elliott TR, editors. Handbook of Rehabilitation Psychology. Washington, USA: American Psychological Association Press; 2000.
  13. Sinha M. Portrait of caregivers, 2012 [Internet]. Ottawa, Canada: Statistics Canada; 2013. Available from: statcan.gc.ca/n1/pub/89-652-x/89-652-x2013001-eng.pdf
  14. Vitaliano PP, Zhang J, Scanlan J. Is caregiving hazardous to one’s physical health? A meta-analysis. Psychological Bulletin. 2003;129:946–72.
  15. Maltby KF, Sanderson CR, Lobb EA, Phillips JL. Sleep disturbances in caregivers of patients with advanced cancer: a systematic review. Palliative and Supportive Care. 2017;15(1):125-40.
  16. Wang XR, Liu SX, Robinson KM, Shawler C, Zhou L. The impact of dementia caregiving on self‐care management of caregivers and facilitators: a qualitative study. Psychogeriatrics. 2019;19(1):23-31.
  17. Adelman RD, Tmanova LL, Delgado D, Dion S, Lachs MS. Caregiver burden: a clinical review. Journal of the American Medical Association. 2014;311(10):1052-60.
  18. Vanetzian E. Learning readiness for patient teaching in stroke rehabilitation. Journal of Advanced Nursing. 1997;26(3):589-94.
  19. Duncan J, Bowden C, Smith AB. Reviewing and rethinking parent support and parent education opportunities in New Zealand. New Zealand Annual Review of Education. 2005;14:153-70.
  20. Cameron JI, Gignac MA. “Timing It Right”: a conceptual framework for addressing the support needs of family caregivers to stroke survivors from the hospital to the home. Patient Education and Counseling. 2008;70(3):305-14.
  21. Sit JW, Wong TK, Clinton M, Li LS, Fong YM. Stroke care in the home: the impact of social support on the general health of family caregivers. Journal of Clinical Nursing. 2004;13(7):816-24.
  22. Phelan EA, Debnam KJ, Anderson LA, Owens SB. A systematic review of intervention studies to prevent hospitalizations of community-dwelling older adults with dementia. Medical Care. 2015;53(2):207.
  23. Sciascia AD. A basic construct for improving outcomes in rehabilitation. International Journal of Athletic Therapy and Training. 2013;18(3):14-19.
  24. Visser-Meily A, van Heugten C, Post M, Schepers V, Lindeman E. Intervention studies for caregivers of stroke survivors: a critical review. Patient Education and Counselling. 2005;56:257–67.
  25. Teri L, McCurry SM, Logsdon R, Gibbons LE. Training community consultants to help family caregivers improve dementia care: a randomized controlled trial. 2005;45:802–11.
  26. Sorensen S, Pinquart M, Duberstein P. How effective are interventions with caregivers? An updated meta-analysis. 2002;42:356–72.
  27. Greaves CJ, Wingham J, Deighan C, Doherty P, Elliott J, Armitage W, et al. Optimizing self-care support for people with heart failure and their caregivers: development of the Rehabilitation Enablement in Chronic Heart Failure (REACH-HF) intervention using intervention mapping. Pilot and Feasibility Studies. 2016;2(1):37.
  28. Gitlin L, Belle S, Burgio L, Czaja SJ, Mahoney D, Gallagher-Thompson D. Effect of multicomponent interventions on caregiver burden and depression: the REACH multisite initiative at 6-month follow up. Psychology and Aging. 2003;8(3):361–74
  29. Yeh LL, Liu SK, Hwu HG. Needs and demands for community psychiatric rehabilitation programs from the perspectives of patients and caregivers. Community Mental Health Journal. 2011;47(4):415-23.
  30. Hokenstad A, Hart AY, Gould DA, Halper D, Levine C. Closing the home care case: clinicians’ perspectives on family caregiving. Home Health Care Management and Practice. 2005;17(5):388-97.