Understanding Caregiving and Family Caregivers

A large amount of research has recently been completed on understanding caregiving that focuses on the different types of people who are family caregivers. Below is a collection of research articles and other documents that shed light on the role of the caregiver, and the positive and negative aspects of caregiving responsibilities.

 

PROFILE OF FAMILY CAREGIVERS

Canadian Virtual Hospice. 2016. Indigenous Voices: Expectations of Care.

Canadian Virtual Hospice. 2016. Indigenous Voices: Care for the Patient and Family.

Carers UK. 2017. Make Connections, get support: Recognizing ourselves and others as carers.

Changing Care: Embrace. (2018). The Indigenous View of Family Caregiving.

Giosa, J. L., Stolee, P., Dupuis, S., Mock, S. M., & Santi, S. M. 2014. An examination of Family Caregiver Experiences during Care Transitions of Older Adults. Canadian Journal on Aging. 33(2), 137-153.

Hollander, M. J., Liu, G., Chappell, N. L. 2009. Who cares and how much? The imputed economic contribution to the Canadian healthcare system of middle aged and older unpaid caregivers providing care to the elderly. Healthcare Quarterly, 12(2); 42-49.

James, N. 2013. The formal support experiences of family carers of people with an intellectual disability who also display challenging behaviour and/or mental health issues: What do carers say? Journal of Intellectual Disabilities, 17(1), 6-23.

Jull, J. 2010. Seniors caring for seniors: Examining the literature on injuries and contributing factors affecting the health and well-being of older adult caregivers.   Canadian Association of Occupational Therapists.

Lavela, S.L., & Ather, N. 2010. Psychological health in older adult spousal caregivers of older adults. Chronic Illness, 6(1):67-80.

Lum, J. 2011. In Focus backgrounder: Informal caregiving and diversity. Canadian Research Network for Care in the Community.

Lum, J., Hawkins, L., Liu, J., Ying, A., Sladek, J., Peckham, A., Williams, P. 2011. In Focus backgrounder: Informal caregivers.  Canadian Research Network for Care in the Community (CRNCC).

Lum, J., & Hawkins, L. 2011.  In Focus backgrounder: Informal caregiving and LGBT communities.  Canadian Research Network for Care in the Community (CRNCC).

Mehta, R., and Nafus, D. 2016. Atlas of caregiving pilot: Study report. Family Caregiver Alliance.

Mei, Z., Eales, J., & Fast, J. 2013. Older Canadians provide care. Seniors Association of Greater Edmonton

Palmer, S., and Schall, J. 2016.  The Role of Family Caregivers throughout the Patient Experience. The Beryl Institute and Caregiver Action Network.

Petch, J. & Laupacis, A.  2012. Supporting Ontario’s Unpaid Caregivers.  Healthy Debate: October 11 2012: Toronto, Ontario.

Shanely, C., Russell, C., Middleton, H., Simpson-Young, V. 2011. Living through end-stage dementia: The experiences and expressed needs of family carersDementia, 10(3), 325-340.

Sinha, M.  2012. Portrait of Caregivers, 2012.  Ottawa: Statistics Canada.

Su C, Khanlou N & Mustafa N. (2018). Chinese Immigrant Mothers of Children with Developmental Disabilities: Stressors and Social SupportInternational of Journal of Mental Health and Addiction. 16(1), 1-18. DOI: 10.1007/s11469-018-9882-z.

The Change Foundation. 2018. Spotlight on Ontario’s Caregivers.

Turner, A. & Findlay, L. 2012. Informal caregiving for seniors. Ottawa: Statistics Canada.

Vanier Institute. 2017. A Snapshot of Family Caregiving and Work in Canada.

Wolff, J., & Spillman, B. 2014. Older adults receiving assistance with physician visits and prescribed medications and their family caregivers: Prevalence, characteristics, and hours of careJournals of Gerontology Series, B: Psychological Sciences and Social Sciences, 69(7), S65–S72.

CHALLENGES OF CAREGIVING

Adelman, R.D., Tmanova, L.L., Delgado, D., Dion, S., Lachs, M.S. 2014.  Caregiver burden: A clinical review. JAMA, 311(10):1052-1060.

Brotman, S., Ryan, B., Collins, S., Chamberland, L., Cormier, R., et al. 2007. Coming Out to Care: Caregivers of Gay and Lesbian Seniors in Canada. The Gerontologist, 47 (4). 490-503. Canadian Institute of Health Information (CIHI). 2010Supporting informal caregivers: the heart of homecare – Executive Summary.

Employer Panel for Caregivers. When Work and Caregiving Collide: How Employers Can Support Their Employees Who Are Caregivers.

Grant, M., Sun, V., Fujinami, R., Sidhu, R., Otis-Green, S., Juarez, G., & Ferrell, B. 2013. Family caregiver burden, skills preparedness, and quality of life in non-small cell lung cancerOncology Nursing Forum, 40(4), 337-46.

Khanlou N, Haque, N Mustafa N, Vazquez LM, Mantini A, & Weiss J.  (2017). Access barriers to services for immigrant mothers of children with autism in Canada.  International Journal of Mental Health & Addiction 2(15), 239-259.

Keating, N., Fast, J., Lero, D., Lucas S., Eales, J. 2014. A taxonomy of the economic costs of family care to adults. The Journal of the Economics of Ageing3, 11-20.

Lero D., Keating N., Fast J., Joseph G., Cook L. 2007. The Interplay of Risk Factors Associated with Negative Outcomes among Family Caregivers: A Synthesis of the Literature. Human Resources and Skills Development Canada.

Milliken, A., Mahoney, E.K., Mahoney, K.J., Mignosa, K., Rodriguez, I., et al. 2018.  “I’m just trying to cope for both of us”: Challenges and supports of family caregivers in participant-directed programs. Journal of Gerontological Social Work, 62(2).

Peters, M.E., Goedendorp, M.M., Verhagen, S.A., Smilde, T.J., Bleiienberg, G., van der Graff, W.T.2014. A prospective analysis on fatigue and experienced burden in informal caregivers of cancer patients during cancer treatment in the palliative phase. Acta Oncologica, Oct 7, 1-7.

Turcotte, M. 2013. Family caregiving: What are the consequences? Ottawa: Statistics Canada.

Schlaffer, J.L., Tremblay, S., Laizner, A.M., Lambert, S. 2019. Developing education materials for caregivers of culturally and linguistically diverse patients: Insights from a qualitative analysis of caregivers’ needs, access and understanding of information. Health Expectations, 22(3), 444-456. Vezina, M., & Turcotte, M. 2010. Caring for a parent who lives far away: The consequences. Canadian Social Trends, 89. 

Wolff, J., Spillman, B., Freedman, V., & Kasper, J. 2016. A national profile of family and unpaid caregivers who assist older adults with health care activities. JAMA Internal Medicine, 176(3):372:379

 

POSITIVE ASPECTS OF CAREGIVING

Brinn, R. Marx, M.S., Peterson, F.P., Cohen-Mansfield, J. n.d. Positive Aspects of Caregiving. Today’s Caregiver.

Carbonneau, H., Caron, C., & Desrosier, J. 2010. Development of a conceptual framework of positive aspects of caregiving in dementia. Dementia, 9(3), 327–353.

Cheng, S.T., Mak, E.P.M., Lau, R.W.L., Ng, N.S.S., & Lam, L.C.W. 2015. Voices of Alzheimer caregivers on positive aspects of caregiving. The Gerontologist.

Grover, S., Nehra, R., Malhotra, R., Kate, N. 2016.Positive Aspects of Caregiving Experience among Caregivers of Patients with Dementia. East Asian Archives of Psychiatry, 27, 71-78.

Kate, N., Grover, S., Kulhara, P., &  Nehra, R. 2011. Scale for positive aspects of caregiving experience: Development, reliability, and factor structure. East Asian Archives of Psychiatry, 22(2), 62-69.

Quinn, C., Nelis, S.M., Martyr, A., Victor, C., Morris, R.G., et al. 2019. Influence of Positive and Negative Dimensions of Dementia Caregiving on Caregiver Well-Being and Satisfaction With Life: Findings From the IDEAL Study. The American Journal of Geriatric Psychiatry.

 

CAREGIVERS OF PEOPLE LIVING WITH MENTAL ILLNESS AND ADDICTION

Canadian Mental Health Association. (2006). Caring Together: Families as Partners in the Mental Health and Addiction System.

Girma, E.,  Möller-Leimkühler, A.M., Dehning, S., Mueller, N., Tesfaye, M., and Froeschl, G. (2014). Self-stigma among caregivers of people with mental illness: toward caregivers’ empowerment. Journal of Multidisciplinary Healthcare, 7, 37-43.

Grover, S., Chakrabarti, S., Aggarwal, M., Avasthi, A., Kulhara, P., Sharma, S., and Khehra, N. (2011). Comparative study of the experience of caregiving in bipolar affective disorder and schizophrenia. International Journal of Social Psychiatry.

Kartalova-O’Doherty, Y., & Doherty, D. T. 2009. Satisfied carers of persons with enduring mental illness: Who and why?  The International Journal of Social Psychiatry, 55(3), 257–271.

Lilas Ali, L., Ahlström, B.H., Krevers, B., Sjöström, N., &  Skärsäter, I. 2013. Support for young informal carers of persons with mental illness: A mixed-method studyIssues in Mental Health Nursing, 34(8), 611-618.

Lua, P.L, & Bakar, Z.A. (2011). Health-related quality of life profiles among family caregivers of patients with schizophrenia. Journal of Family Community Health, 34(4), 331-339.

Mannelli, P. (2013). The burden of caring: Drug users & their families. Indian Journal of Medical Research, 137(4), 636-638.

Shah, A.J., Wadoo, O., & Latoo, J. 2010. Psychological distress in carers of people with mental disorders.  British Journal of Medical Practitioners, 3(3):a327.

Young, L., Vandyk, A., Jacob, J.D., McPherson, C., Murata, L. 2019. Being Parent Caregivers for Adult Children with Schizophrenia. Issues in Mental Health Nursing, 40(4), 297-303.


Note: Links are provided where possible to articles that are accessible to the public. Sources without links are accessible by purchase or through a subscription to an academic journal.

WHAT’S BEING SAID

Where do #caregivers go for information and supports? We gained insights from our survey with 800 caregivers for the Spotlight on Ontario's Caregivers however we wanted to hear from our Caregiver Advisory Panel members as well. Check out what they said: bit.ly/2KJpOOm pic.twitter.com/WJG3ehZI0X