Hostname: page-component-78c5997874-s2hrs Total loading time: 0 Render date: 2024-11-19T15:17:07.910Z Has data issue: false hasContentIssue false
  • English
  • Français

‘It’s not just the word care, it’s the meaning of the word…(they) actually care': caregivers’ perceptions of home-based primary care in Toronto, Ontario

Published online by Cambridge University Press:  17 May 2017

TRACY SMITH-CARRIER ,
THUY-NGA PHAM ,
SABRINA AKHTAR ,
GAYLE SEDDON ,
MARK NOWACZYNSKI  and
SAMIR K. SINHA
TRACY SMITH-CARRIER*
Affiliation:
School of Social Work, King's University College at Western University, London, Ontario, Canada.
THUY-NGA PHAM
Affiliation:
South East Toronto Family Health Team, Toronto, Canada. Department of Family and Community Medicine, University of Toronto, Toronto, Canada.
SABRINA AKHTAR
Affiliation:
Department of Family and Community Medicine, University of Toronto, Toronto, Canada. Home-Based Care Program, Toronto Western Family Health Team, University Health Network, Toronto, Canada.
GAYLE SEDDON
Affiliation:
Community Programs, Toronto Central Community Care Access Centre, Toronto, Canada.
MARK NOWACZYNSKI
Affiliation:
Department of Family and Community Medicine, University of Toronto, Toronto, Canada. House Calls: Interdisciplinary Healthcare for Homebound Seniors, SPRINT Senior Care, Toronto, Canada.
SAMIR K. SINHA
Affiliation:
Department of Medicine, Sinai Health System and University Health Network, Toronto, Canada. Department of Medicine, University of Toronto, Toronto, Canada. Division of Geriatric Medicine and Gerontology, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.
*
Address for correspondence: Tracy Smith-Carrier, School of Social Work, King's University College at Western University, 266 Epworth Avenue, FB 106, London, Ontario, Canada, N6A 2M3 E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

The frail and homebound older adult populations currently experience difficulties accessing primary care in the medical office. Given this fundamental access to care problem, and the questionable care quality that arises when navigating a labyrinthine health-care system, these populations have typically been subject to inadequate primary care. To meet their needs better, growing research stresses the importance of providing comprehensive home-based primary care (HBPC), delivered by an inter-professional team of health-care providers. Family care-givers typically provide the majority of care within the home, yet their perceptions of HBPC remain under-researched. The purpose of this study was to explore unpaid care-givers' perceptions of and experiences with HBPC programmes in Toronto, Canada. We conducted qualitative inductive content analysis, using analytic procedures informed by grounded theory, to discover a number of themes regarding unpaid care-givers' understandings of HBPC. Findings suggest that, compared to the standard office-based care model, HBPC may better support unpaid care-givers, providing them assistance with system navigation and offering them the peace of mind that they are not alone, but have someone to call should the need arise. The implications of this research suggest that HBPC could be a model to help mitigate the discontinuities in care that patients with comorbid chronic conditions and their attendant unpaid care-givers experience when accessing fragmented health, home and social care systems.

Keywords

care-givinghome-based primary carehome carehome visitsrelational careperson-centred carefamily-centred care
Type
Article
Information
Ageing & Society , Volume 38 , Issue 10 , October 2018 , pp. 2019 - 2040
Copyright
Copyright © Cambridge University Press 2017 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Aoun, S., Kristjanson, L., Currow, D. and Hudson, P. 2005. Caregiving for the terminally ill: at what cost? Palliative Medicine, 19, 7, 551–5.Google Scholar
Argimon, J., Limon, E., Vila, J. and Cabezas, C. 2004. Health-related quality of life in carers of patients with dementia. Family Practice, 21, 4, 454–7.Google Scholar
Armstrong, P. and Banerjee, A. 2009. Challenging questions: designing longterm residential care with women in mind. In Armstrong, P., Boscoe, M., Clow, B., Grant, K., Hawoth-Brockman, M., Jackson, B., Pederson, A., Seeley, M. and Springer, J. (eds), A Place to Call Home: Long-term Care in Canada. Fernwood Publishing, Winnipeg, Canada, 10–28.Google Scholar
Arno, P., Levine, C. and Memmott, M. 1999. The economic value of informal caregiving. Health Affairs, 18, 2, 182–8.Google Scholar
Barg, F., Pasacreta, J., Nuamah, I., Robinson, K., Angeletti, K., Yasko, J. and McCorkle, R. 1998. A description of a psychoeducational intervention for family caregivers of cancer patients. Journal of Family Nursing, 44, 4, 394–413.Google Scholar
Beales, J. and Edes, T. 2009. Veteran's Affairs home-based primary care. Clinics in Geriatric Medicine, 25, 1, 149–54.Google Scholar
Bedard, M., Pedlar, D., Martin, N., Malott, O. and Stones, M. 2000. Burden in caregivers of cognitively impaired older adults living in the community: methodological issues and determinants. International Psychogeriatrics, 12, 3, 307–32.Google Scholar
Berger, R. 2015. Now I see it, now I don't: researcher's position and reflexivity in qualitative research. Qualitative Research, 15, 2, 219–34.Google Scholar
Brown, R. M. and Brown, S. L. 2014. Informal caregiving: a reappraisal of effects on caregivers. Social Issues and Policy Review, 8, 1, 74–102.Google Scholar
Cameron, J., Franche, R., Cheung, A. and Stewart, D. 2002. Lifestyle interference and emotional distress in family caregivers of advanced cancer patients. Cancer, 94, 2, 521–7.Google Scholar
Campbell, S. M., Roland, M. O. and Buetow, S. A. 2000. Defining quality of care. Social Science and Medicine, 51, 11, 1611–25.Google Scholar
Cannuscio, C., Coldita, G., Rimm, E., Berkman, L., Jones, C. and Kawachi, J. 2004. Employment status, social ties, and caregivers’ mental health. Social Science and Medicine, 58, 7, 1247–56.Google Scholar
Charmaz, K. 2006. Constructing Grounded Theory: A Practical Guide Through Qualitative Analysis. Sage, London.Google Scholar
Cherlin, E., Schulman-Green, D., McCorkle, R., Johnson-Jurzeler, R. and Bradley, E. 2004. Family perceptions of clinicians’ outstanding practices in end-of-life care. Journal of Palliative Care, 20, 2, 113–6.Google Scholar
Connell, C., Janevic, M. and Gallant, M. 2001. The costs of caring: impact of dementia on family caregivers. Journal of Geriatric Psychiatry and Neurology, 14, 4, 179–87.Google Scholar
Covinsky, K., Newcomer, R., Fox, P., Wood, J., Sands, L., Dane, K. and Yaffe, K. 2003. Patient and caregiver characteristics associated with depression in caregivers of patients with dementia. Journal of General Internal Medicine, 18, 12, 1006–14.Google Scholar
Dunbrack, J. 2005. The Information Needs of Informal Caregivers Involved in Providing Support to a Critically Ill Loved One. A synthesis report prepared for Health Canada. Available online at http://www.hc-sc.gc.ca/hcs-sss/pubs/home-domicile/2005-info-caregiver-aidant/index-eng.php [Accessed 13 December 2016].Google Scholar
Feinberg, L. F. 2014. Recognizing and supporting family caregivers: the time has come. Public Policy & Aging Report, 24, 2, 65–9.Google Scholar
Feinberg, L. F. and Levine, C. 2015. Family caregiving: looking to the future. Generations, 39, 4, 11–20.Google Scholar
Funk, L. M., Stajduhar, K. I., Toye, C., Grande, G., Aoun, S. and Todd, C. 2010. Part 2: Home-based family caregiving at the end of life: a comprehensive review of published qualitative research (1998–2008). Palliative Medicine, 24, 6, 594–607.Google Scholar
Gaugler, J. E., Potter, T. and Pruinelli, L. 2014. Partnering with caregivers. Clinics in Geriatrics Medicine, 30, 3, 493–515.Google Scholar
Gitlin, L., Marx, K., Stanley, I. and Hodgson, N. 2015. Translating evidence-based dementia caregiving interventions into practice: state-of-the-science and next steps. The Gerontologist, 55, 2, 210–26.Google Scholar
Grumbach, K. and Bodenheimer, T. 2004. Can health care teams improve primary care practice? Journal of the American Medical Association, 291, 10, 1246–51.Google Scholar
Guberman, N. 2004. Designing home and community care for the future: who needs to care? In Grant, K., Amaratunga, C., Armstrong, P., Boscoe, M., Pederson, A. and Willson, K. (eds), Caring For/Caring About: Women, Home Care, and Unpaid Caregiving. Garamond Press, Toronto, 75–90.Google Scholar
Guerriere, D., Zagorski, B. and Coyte, P. 2013. Family caregiver satisfaction with home-based nursing and physician care over the palliative care trajectory: results from a longitudinal survey questionnaire. Palliative Medicine, 27, 7, 632–8.Google Scholar
Hebblethwaite, S. 2013. ‘I think that it could work but…’: tensions between the theory and practice of person-centred and relationship-centred care. Therapeutic Recreation Journal, 47, 1, 13–34.Google Scholar
Hogan, S., Loft, J., Power, M. and Schulkin, J. 2009. Referral sampling: using physicians to recruit patients. Survey Practice, 2, 9, 1–5.Google Scholar
Hudson, P., Remedios, C. and Thomas, K. 2010. A systematic review of psychosocial interventions for family carers of palliative care patients. BMC Palliative Care, 9, 17.Google Scholar
Hutchison, B. and Glazier, R. 2013. Ontario's primary care reforms have transformed the local care landscape, but a plan is needed for ongoing improvement. Health Affairs, 32, 4, 695–703.Google Scholar
Jarrett, N., Payne, S. and Wiles, R. 1999. Terminally ill patients’ and lay-careers’ perceptions and experiences of community-based services. Journal of Advanced Nursing, 29, 2, 476–83.Google Scholar
Kim, Y. and Shultz, R. 2008. Family caregivers’ strains: comparative analysis of cancer caregiving with dementia, diabetes, and frail elderly caregiving. Journal of Aging and Health, 20, 5, 483–503.Google Scholar
Kinsella, G., Cooper, B., Picton, C. and Murtagh, D. 1998. A review of measurement of caregiver and family burden in palliative care. Journal of Palliative Care, 14, 2, 37–45.Google Scholar
Lévesque, L., Ducharme, F., Caron, C., Hanson, E., Magnusson, L., Nolan, J. and Nolan, M. 2010. A partnership approach to service needs assessment with family caregivers of an aging relative living at home: a qualitative analysis of the experiences of caregivers and practitioners. International Journal of Nursing Studies, 47, 7, 876–87.Google Scholar
Lilly, M. B., Robinson, C. A., Holtzman, S. an Bottorff, J. L. 2012. Can we move beyond burden and burnout to support the health and wellness of family caregivers to persons with dementia? Evidence from British Columbia, Canada. Health & Social Care in the Community, 20, 1, 103–12.Google Scholar
Lopez, J., Lopez-Arrieta, J. and Crespo, M. 2005. Factors associated with the positive impact of caring for elderly and dependent relatives. Archives of Gerontology and Geriatrics, 41, 1, 81–94.Google Scholar
Manderson, B., Mcmurray, J., Piraino, E. and Stolee, P. 2012. Navigation roles support chronically ill older adults through healthcare transitions: a systematic review of the literature. Health & Social Care in the Community, 20, 2, 113–27.Google Scholar
Martire, L. and Schulz, R. 2007. Involving family in psychosocial interventions for chronic illness. Current Directions in Psychological Science, 16, 2, 90–4.Google Scholar
Murray, S., Boyd, K., Kendall, M., Worth, A., Benton, T. and Clausen, H. 2002. Dying of lung cancer or cardiac failure: prospective qualitative interview study of patients and their carers in the community. BMJ (Clinical Research Edition), 325, 7370, 929.Google Scholar
Okie, S. 2008. Innovation in primary care: staying one step ahead of burnout. New England Journal of Medicine, 359, 2305–9.Google Scholar
Ornstein, K., Smith, K. and Boal, J. 2009. Understanding and improving the burden and unmet needs of informal caregivers of homebound patients enrolled in a home-based primary care program. Journal of Applied Gerontology, 28, 4, 482–503.Google Scholar
Padgett, D. 1998. Qualitative Methods in Social Work Research: Challenges and Rewards. Sage, Thousand Oaks, California.Google Scholar
Payne, S., Smith, P. and Dean, S. 1999. Identifying the concerns of informal carers in palliative care. Palliative Medicine, 13, 1, 37–44.Google Scholar
Peacock, S., Forbes, D., Markle-Reid, M., Hawranik, P., Morgan, D., Jansen, L., Leipert, B. and Henderson, S. 2010. The positive aspects of the caregiving journey with dementia: using a strengths-based perspective to reveal opportunities. Journal of Applied Gerontology, 29, 5, 640–59.Google Scholar
Pinquart, M. and Sörensen, S. 2003. Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis. Psychology and Aging, 18, 2, 250–67.Google Scholar
Ravenscroft, E. F. 2010. Navigating the health care system: insights from consumers with multimorbidity. Journal of Nursing and Healthcare of Chronic Illness, 2, 3, 215–24.Google Scholar
Rhodes, P. and Shaw, S. 1999. Informal care and terminal illness. Health and Social Care in the Community, 7, 1, 39–50.Google Scholar
Roud, H., Keeling, S. and Sainsbury, R. 2006. Using the COPE assessment tool with informal carers of people with dementia in New Zealand. New Zealand Medical Journal, 119, 1237, 2053–64.Google Scholar
Schulz, R. and Beach, S. 1999. Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. Journal of the American Medical Association, 282, 23, 2215–9.Google Scholar
Shenton, A. 2004. Strategies for ensuring trustworthiness in qualitative research projects. Education for Information, 22, 2, 63–75.Google Scholar
Singer, Y., Bachner, Y., Shvartzman, P. and Carmel, S. 2005. Home death – the caregivers' experiences. Journal of Pain and Symptom Management, 30, 1, 70–4.Google Scholar
Smith-Carrier, T., Nowaczynski, M., Akhtar, S., Pham, T.-N. and Sinha, S. 2012. Home-based care for frail older homebound adults: an innovative solution for a 21st century challenge. Canadian Geriatrics Society Journal of CME, 2, 1, 26–9.Google Scholar
Smith-Carrier, T., Pham, T.-N., Akhtar, S., Nowaczynski, M., Seddon, G. and Sinha, S. 2015. ‘A more rounded full care model’: interprofessional team members’ perceptions of home-based primary care in Ontario, Canada. Home Health Care Services Quarterly, 34, 3–4, 232–51.Google Scholar
Smith-Carrier, T., Sinha, S., Nowaczynski, M., Akhtar, S., Seddon, G. and Pham, T.-N. 2016. It ‘makes you feel more like a person than a patient’: patients’ experiences receiving home-based primary care (HBPC) in Ontario, Canada. Health & Social Care in the Community, 25, 2, 723–33.Google Scholar
Stall, N., Nowaczynski, M. and Sinha, S. 2013 a. Back to the future: home-based primary care for older homebound Canadians. Part 1: Where we are now. Canadian Family Physician, 59, 3, 237–40.Google Scholar
Stall, N., Nowaczynski, M. and Sinha, S. 2013 b. Back to the future: home-based primary care for older homebound Canadian. Part 2: Where we are going. Canadian Family Physician, 59, 3, 243–5.Google Scholar
Stall, N., Nowaczynski, M. and Sinha, S. 2014. A systematic review of outcomes from home-based primary care programs for homebound older adults. Journal of the American Geriatrics Society, 62, 12, 2243–5.Google Scholar
Statistics Canada 2013. Canadians in Context – Aging Population. Human Resources and Skills Development Canada. Available online at http://www4.hrsdc.gc.ca/[email protected]?iid=33 [Accessed 14 December 2016].Google Scholar
Stenberg, U., Ruland, C. and Miaskowski, C. 2010. Review of the literature on the effects of caring for a patient with cancer. Psychooncology, 19, 10, 1013–25.Google Scholar
Stewart, M., Brown, J. B., Weston, W. W., McWhinney, I. R., McWilliam, C. L. and Freeman, T. R. 2003. Patient-centered Medicine: Transforming the Clinical Method. Second edition, Radcliffe Medical Press, Abingdon, UK.Google Scholar
Strauss, J. and Corbin, A. 1998. Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory. Sage, Thousand Oaks, California.Google Scholar
Temkin-Greener, H., Bajorska, A., Peterson, D. R., Kunitz, S. J., Gross, D., Williams, T. F. and Mukamel, D. B. 2004. Social support and risk-adjusted mortality in a frail older population. Medical Care, 42, 8, 779–88.Google Scholar
van Servellen, G., Fongwa, M. and D'Errico, E. M. 2006. Continuity of care and quality care outcomes for people experiencing chronic conditions: a literature review. Nursing and Health Sciences, 8, 3, 185–95.Google Scholar
Wackerbarth, S. and Johnson, M. 2002. Essential information and support needs of family caregivers. Patient Educational Counsel, 47, 2, 95–100.Google Scholar
Ward-Griffin, C. 2012. Supportive care to family caregivers is not supportive enough: moving towards an equitable approach to dementia home care. Neurodegenerative Disease Management, 2, 2, 173–81.Google Scholar
Wolff, J. L. and Boyd, C. M. 2015. A look at person- and family-centered care among older adults: results from a national survey [corrected]. Journal of General Internal Medicine, 30, 10, 1497–504.Google Scholar
Yedidia, M. and Tiedemann, A. 2008. How do family caregivers describe their needs for professional help? American Journal of Nursing, 108, 9, 35–7.Google Scholar
Zygmunt, A., Asada, Y. and Burge, F. 2015. Is team-based primary care associated with less access problems and self-reported unmet need in Canada? International Journal of Health Services. First published: 15 July 2015.Google Scholar