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.



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

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.

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.

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.

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

Statistics Canada. 2014. Study: End-of-life care, 2012. 

The Change Foundation. 2016. A Profile of Family Caregivers in Ontario.

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.



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

Canadian Institute of Health Information (CIHI). 2012Supporting 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.

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 Ageing, 3, 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.

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.

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



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

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.



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.

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



Bleakney, A. 2014. Young Canadians providing care. Statistics Canada.

Grant, C., Stainton, T., Marshall, S. 2012. Young carers in Canada: the hidden costs and benefits of young caregiving.  The Vanier Institute of the Family.

Kavanaugh, M., Stamatopoulos, V., Cohen, D., & Zhang, L. 2015. Unacknowledged caregivers: A scoping review of research on caregiving youth in the United StatesAdolescent Research Review, 1(1), 29-49.

Stamatopoulos, V. 2015. One million and counting: the hidden army of young carers in Canada. Journal of Youth Studies18(6): 809–822.

Stamatopoulos, V. 2016. Supporting young carers: a qualitative review of young carer services in CanadaInternational Journal of Adolescence and Youth, 21(2): 178-194.

Vanier Institute. Young Carers in Canada: The Hidden Costs and Benefits of Young Caregiving.



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 study. Issues in Mental Health Nursing, 34(8), 611-618.

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.

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

Silverberg, E. 2007. Introducing the 3-A Grief Intervention Model for Dementia Caregivers: Acknowledge, Assess and Assist. OMEGA, Vol. 54(3) 215-235.


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.


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