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Mitigating Caregiver Distress in South Western Ontario: Perspectives on Role, Community, and Care
Published online by Cambridge University Press: 11 August 2023
Abstract
The former South West Local Health Integration Network (SW LHIN) of Ontario, which is in a predominantly rural region, regularly reports the lowest rates of caregiver distress in the province. Caregivers from rural communities regularly face challenges related to the access, applicability, and availability of supports and services, This qualitative case study describes perspectives of caregiving from the region, and explores how role construction and expectations of caregivers might both mitigate distress and influence service support use. Thematic analysis identified five themes: anticipated care, gendered caring, service support assumptions, confidence in community, and the “line in the sand”: care decisions for evolving needs. Using the lens of caregiver identity theory, the findings suggest that these caregivers conceptualize identity as an extension of their primary role, to include caregiving obligations and responsibilities. We also noted a steadfast confidence in community and perceived service support assumptions across the region, with no notable rural–urban divide.
Résumé
L’ancien Réseau local d’intégration des services de santé (RLISS) du Sud-Ouest de l’Ontario, une région essentiellement rurale, affiche régulièrement les taux les plus bas de détresse des aidants dans la province. Les aidants des communautés rurales sont régulièrement confrontés à des défis liés à l’accessibilité, la mise en œuvre et la disponibilité du soutien et des services. Cette étude de cas qualitative décrit les points de vue des aidants de la région et explore comment la conception de leur rôle et leurs attentes peuvent à la fois atténuer leur détresse et influencer leur utilisation des services de soutien. L’analyse thématique a permis de dégager cinq thèmes : l’accompagnement anticipé, la prise en charge genrée, les hypothèses sur le soutien des services, la confiance en la communauté et la définition de limites dans les décisions relatives à l’aidance quand les besoins évoluent. À travers le prisme de la théorie de l’identité de l’aidant, les résultats suggèrent que ces personnes conçoivent cette identité comme un élargissement de leur rôle principal pour inclure des obligations et responsabilités d’aidance. Nous avons également constaté une confiance inébranlable en la communauté et des perceptions de soutien des services dans l’ensemble de la région, et ce sans écart notable entre les régions rurales et les régions urbaines.
Keywords
- Type
- Article
- Information
- Canadian Journal on Aging / La Revue canadienne du vieillissement , Volume 43 , Issue 1 , March 2024 , pp. 114 - 123
- Copyright
- © Canadian Association on Gerontology 2023
References
Adelman, R. D., Tmanova, L. L., Delgado, D., Dion, S., & Lachs, M. S. (2014). Caregiver Burden: A clinical review. JAMA, 311(10), 1052–1060. https://doi.org/10.1001/jama.2014.304CrossRefGoogle ScholarPubMed
Allen, D. (2019). Care trajectory management: A conceptual framework for formalizing emergent organisation in nursing practice. Journal of Nursing Management, 27(1), 4–9. https://doi.org/10.1111/jonm.12645CrossRefGoogle ScholarPubMed
Anton, C. E., & Lawrence, C. (2014). Home is where the heart is: The effect of place of residence on place attachment and community participation. Journal of Environmental Psychology, 40, 451–461. https://doi.org/10.1016/j.jenvp.2014.10.007CrossRefGoogle Scholar
Bandura, A. (2000). Exercise of human agency through collective efficacy. Current Directions in Psychological Science, 9(3), 75–78. https://doi.org/10.1111/1467-8721.00064CrossRefGoogle Scholar
Berger, P. L., & Luckmann, T. (1967). The social construction of reality: A treatise in the sociology of knowledge. Anchor Books.Google Scholar
Birtch, T. (2017). Rural volunteerism: How well is the heart of community doing? Rural Ontario Foresight Papers, Issue. Retrieved from https://www.ruralontarioinstitute.ca/uploads/userfiles/files/Rural%20Ontario%20Foresight%20Papers%202017_Volunteerism%20and%20Northern%20Perspective.pdfGoogle Scholar
Brannen, C., Johnson Emberly, D., & McGrath, P. (2009). Stress in rural Canada: A structured review of context, stress levels, and sources of stress. Health and Place, 15(1), 219–227. https://doi.org/10.1016/j.healthplace.2008.05.001CrossRefGoogle Scholar
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oaCrossRefGoogle Scholar
Brody, E. M. (1985). Parent care as a normative family stress. The Gerontologist, 25(1), 19–29. https://doi.org/10.1093/geront/25.1.19CrossRefGoogle Scholar
Buckwalter, K. C., & Davis, L. L. (2011). Elder caregiving in rural communities. In Talley, R., Chwalisz, K., & Buckwalter, K. (Eds.) Rural caregiving in the United States. Caregiving: Research, practice, policy (pp. 33–46). Springer.CrossRefGoogle Scholar
Carroll, L., Chippior, J., Karmali, S., Sriram, D., & Ysseldyk, R. (2019). We are caregivers: Social identity is associated with lower perceived stress among rural informal caregivers. Canadian Journal on Aging / La Revue canadienne du vieillissement, 38(1), 59–75. https://doi.org/10.1017/S0714980818000430CrossRefGoogle ScholarPubMed
Chappell, N., Schroeder, B., & Gibbens, M. (2008). Respite for rural and remote caregivers. In Keating, N. (Ed.), Rural ageing: A good place to grow old? (pp. 53–62). The Policy Press.Google Scholar
Cohen, S., & Wills, T. A. (1985). Stress, social support, and the buffering hypothesis. Psychological Bulletin, 98(2), 310–357. https://doi.org/10.1037/0033-2909.98.2.310CrossRefGoogle ScholarPubMed
Cohen, S. A., Kunicki, Z. J., Nash, C. C., Drohan, M. M., & Greaney, M. L. (2021). Rural-urban differences in caregiver burden due to the COVID-19 pandemic among a national sample of informal caregivers. Gerontology & Geriatric Medicine, 7, 23337214211025124. https://doi.org/10.1177/23337214211025124CrossRefGoogle Scholar
Crist, D., Liu, J., Shea, K. D., Peterson, R. L., Martin-Plank, L., Lacasse, C. L., et al. (2019). “Tipping point” concept analysis in the family caregiving context. Nursing Forum, 54(4), 582–592. https://doi.org/10.1111/nuf.12373.Google ScholarPubMed
Crosato, K. E., & Leipert, B. (2006). Rural women caregivers in Canada. Rural and Remote Health, 6(2), https://doi.org/10.22605/RRH520Google ScholarPubMed
Crotty, M. (1998). The foundations of social research: Meaning and perspective in the research process. Sage.Google Scholar
Crouch, E., Probst, J., & Bennett, K. (2017). Rural-urban differences in unpaid caregivers of adults. Rural and Remote Health, 17(4), 4351. https://doi.org/10.22605/rrh4351Google ScholarPubMed
Del-Pino-Casado, R., Frías-Osuna, A., Palomino-Moral, P. A., Ruzafa-Martínez, M., & Ramos-Morcillo, A. J. (2018). Social support and subjective burden in caregivers of adults and older adults: A meta-analysis. PLoS One, 13(1), e0189874. https://doi.org/10.1371/journal.pone.0189874CrossRefGoogle ScholarPubMed
Eales, J., Keating, N., Rozanova, J., Bardick, A., Swindle, J., Bowles, R. T., et al. (2006). Caring contexts of rural seniors: A case study of diversity among older adults in rural communities: Phase III - Technical Report. Research on Aging, Policies and Practice, Department of Human Ecology, University of Alberta.CrossRefGoogle Scholar
Ehrlich, K., Emami, A., & Heikkilä, K. (2017). The relationship between geographical and social space and approaches to care among rural and urban caregivers caring for a family member with Dementia: A qualitative study. International Journal of Qualitative Studies on Health and Well-being, 12(1), 1275107. https://doi.org/10.1080/17482631.2016.1275107CrossRefGoogle Scholar
Eifert, E. K., Adams, R., Dudley, W., & Perko, M. (2015). Family caregiver identity: A literature review. American Journal of Health Education, 46(6), 357–367. https://doi.org/10.1080/19325037.2015.1099482CrossRefGoogle Scholar
Fast, J. (2015). Caregiving for older adults with disabilities: Present costs, future challenges. Retrieved from file:///C:/Users/Owner/Documents/Comps/Key%20reports/Janet%20Fast_Caring%20for%20Older%20Persons_present%20costs%20future%20challenges.pdf.Google Scholar
Friedemann, M.-L., & Buckwalter, K. C. (2014). Family caregiver role and burden related to gender and family relationships. Journal of Family Nursing, 20(3), 313–336. https://doi.org/10.1177/1074840714532715CrossRefGoogle ScholarPubMed
Greenaway, K. H., Haslam, S. A., Cruwys, T., Branscombe, N. R., Ysseldyk, R., & Heldreth, C. (2015). From “We” to “Me”: Group identification enhances perceived personal control with consequences for health and well-being. Journal of Personality and Social Psychology, 109(1), 53–74. https://doi.org/10.1037/pspi0000019CrossRefGoogle Scholar
Guest, G., MacQueen, K. M., & Namey, E. E. (2012). Applied thematic analysis. Sage.CrossRefGoogle Scholar
Hango, D. (2020). Support received by caregivers in Canada (Catalogue no. 75‑006‑X ISSN 2291‑0840). Insights on Canadian Society, Issue. Retrieved from https://www150.statcan.gc.ca/n1/en/pub/75-006-x/2020001/article/00001-eng.pdf?st=NlKrRu8L.Google Scholar
Health Council of Canada. (2012). Seniors in need, caregivers in distress: What are the home care priorities for seniors in Canada? Retrieved from https://www.bcforum.ca/Resources/HCC_HomeCare_FA2012.pdf.Google Scholar
Health Quality Ontario. (2016). The reality of caring: Distress among the caregivers of home care patients. Retrieved from http://www.hqontario.ca/Portals/0/documents/system-performance/reality-caring-report-en.pdf.Google Scholar
Health Quality Ontario. (2017). Measuring Up 2017. Retrieved from http://measuringup.hqontario.ca/.Google Scholar
Health Quality Ontario. (2018). Measuring Up 2018. Retrieved from https://www.hqontario.ca/Portals/0/Documents/pr/measuring-up-2018-en.pdf.Google Scholar
Holstein, M. B., Parks, J. A., & Waymack, M. H. (2011). Ethics, aging and society. Springer.Google Scholar
Hopwood, P., & MacEachen, E. (2021). Policy and practice note: Policy, safety, and regulation with regard to Ontario home care clients and personal support workers. Canadian Journal on Aging / La Revue canadienne du vieillissement, 41, 490–4989. https://doi.org/10.1017/S0714980821000209CrossRefGoogle ScholarPubMed
Hughes, N., Locock, L., & Ziebland, S. (2013). Personal identity and the role of ‘carer’ among relatives and friends of people with multiple sclerosis. Social Science & Medicine, 96, 78–85. https://doi.org/10.1016/j.socscimed.2013.07.023CrossRefGoogle ScholarPubMed
Jetten, J., Haslam, S. A., Cruwys, T., Greenaway, K. H., Haslam, C., & Steffens, N. K. (2017). Advancing the social identity approach to health and well-being: Progressing the social cure research agenda. European Journal of Social Psychology, 47(7), 789–802. https://doi.org/10.1002/ejsp.2333CrossRefGoogle Scholar
Keating, N., Swindle, J., & Fletcher, S. (2011). Aging in rural Canada: A retrospective and review. Canadian Journal of Aging, 30(3), 323–338. https://doi.org/10.1017/S0714980811000250CrossRefGoogle Scholar
Kirby, S., Barlow, V., Saurman, E., Lyle, D., Passey, M., & Currow, D. (2016). Are rural and remote patients, families and caregivers needs in life-limiting illness different from those of urban dwellers? A narrative synthesis of the evidence. Australian Journal of Rural Health, 24(5), 289–299. https://doi.org/10.1111/ajr.12312CrossRefGoogle ScholarPubMed
Kulig, J. C., & Williams, A. (2012). Health and place in rural Canada. In Kulig, J. C. & Williams, A. (Eds.), Health in rural Canada (pp. 1–19). UBC Press.Google Scholar
Marani, H., McKay, S., & Marchildon, G. (2021). The Impact of COVID-19 on the organization of personal support work in Ontario, Canada. Journal of Long-Term Care. https://doi.org/10.31389/jltc.70CrossRefGoogle Scholar
Miller, V. J., Killian, M. O., & Fields, N. (2020). Caregiver identity theory and predictors of burden and depression: Findings from the REACH II study. Aging & Mental Health, 24(2), 212–220. https://doi.org/10.1080/13607863.2018.1533522CrossRefGoogle ScholarPubMed
Montgomery, R. J. V., & Kosloski, K. (2009). Caregiving as a process of changing identity: Implications for caregiver support. Generations: Journal of the American Society on Aging, 33(1), 47–52. https://www.jstor.org/stable/26555632Google Scholar
Montgomery, R. J. V., & Kosloski, K. D. (2013). Pathways to caregiver identity and implications for support services. In Talley, R. C. & Montgomery, R. J. V. (Eds.), Caregiving across the lifespan: research, practice policy (pp. 131–156). Springer.CrossRefGoogle Scholar
Montgomery, R. J. V., Kwak, J., & Kosloski, K. D. (2016). Theories guiding support services for family caregivers. In Bengtson, V. L. & Settersten, R. A. (Eds.), Handbook of theories of aging (3rd ed., pp. 443–462). Springer.Google Scholar
National Institute on Ageing. (2018). Why Canada needs to better care for its working caregivers. Retrieved from https://static1.squarespace.com/static/5c2fa7b03917eed9b5a436d8/t/5c9a5f34652dea9cba554c05/1553620802081/working-caregivers.pdf.Google Scholar
Ontario Caregiver Organization. (2020). Spotlight Ontario’s caregivers: Covid-19 edition 3. Retrieved from https://ontariocaregiver.ca/wp-content/uploads/2020/12/OCO-Spotlight-report-English-Dec10.pdf.Google Scholar
Paasi, A. (2011). The region, identity, and power. Procedia - Social and Behavioral Sciences, 14, 9–16. https://doi.org/10.1016/j.sbspro.2011.03.011CrossRefGoogle Scholar
Patton, M. Q. (2015). Qualitative research & evaluation methods: integrating theory and practice (Fourth edition. ed.). SAGE.Google Scholar
Pauley, T., Chang, B. W., Wojtak, A., Seddon, G., & Hirdes, J. (2018). Predictors of caregiver distress in the community setting using the home care version of the resident assessment instrument. Professional Case Management, 23(2), 60–69. https://doi.org/10.1097/ncm.0000000000000245CrossRefGoogle ScholarPubMed
Pinquart, M., & Sorensen, S. (2007). Correlates of physical health of informal caregivers: A meta-analysis. Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 62(2), P126–P137. https://doi.org/10.1093/geronb/62.2.p126CrossRefGoogle ScholarPubMed
Pohl, J. (2001). Regional identity. In Smelser, N. J. & Baltes, P. B. (Eds.), International Encyclopedia of the Social & Behavioral Sciences (pp. 12,917–12,922). Pergamon.Google Scholar
Raagmaa, G. (2001). Regional identity and social capital in regional economic development and planning. University of Tartu.Google Scholar
Riffin, C., Van, P. H., Wolff, J. L., & Fried, T. (2019). Multifactorial examination of caregiver burden in a national sample of family and unpaid caregivers. Journal of the American Geriatrics Society, 67(2), 277–283. https://doi.org/10.1111/jgs.15664CrossRefGoogle Scholar
Rozanova, J., Dosman, D., & de Jong Gierveld, J. (2008). Participation in rural contexts: community matters. In Keating, N. (Ed.), Rural ageing: A good place to grow old? (pp. 75–86). The Policy Press.Google Scholar
Rurka, M., Suitor, J., & Gilligan, M. (2020). The caregiver identity in context: Consequences of identity threat from siblings. Journals of Gerontology: Series B, 76, 1593–1604. https://doi.org/10.1093/geronb/gbaa099CrossRefGoogle Scholar
Şahin, D. S., Özer, Ö., & Yanardağ, M. Z. (2019). Perceived social support, quality of life and satisfaction with life in elderly people. Educational Gerontology, 45(1), 69–77. https://doi.org/10.1080/03601277.2019.1585065CrossRefGoogle Scholar
Savundranayagam, M. Y., & Montgomery, R. J. V. (2009). Impact of role discrepancies on caregiver Burden among spouses. Research on Aging, 32(2), 175–199. https://doi.org/10.1177/0164027509351473CrossRefGoogle Scholar
Scannell, L., & Gifford, R. (2017). The experienced psychological benefits of place attachment. Journal of Environmental Psychology, 51, 256–269. https://doi.org/10.1016/j.jenvp.2017.04.001CrossRefGoogle Scholar
Sims-Gould, J., & Martin-Matthews, A. (2008). Distance, privacy and independence: Rural homecare. In Keating, N. (Ed.), Rural ageing: A good place to grow old? (pp. 43–52). The Policy Press.CrossRefGoogle Scholar
Speer, S., & Loewen, P. (2021). Perception and reality across Canada’s urban-rural divide. Policy Options. Retrieved from https://policyoptions.irpp.org/magazines/february-2021/perception-and-reality-across-canadas-urban-rural-divide/.Google Scholar
Stake, R. E. (2003). Case studies. In Denzin, N. K. & Lincoln, Y. S. (Eds.), Strategies of qualitative inquiry (2nd ed., pp. 134–164). Sage.Google Scholar
Statistics Canada. (2022). Dictionary, Census of Population, 2021. (Catalogue no. 98-301-X). Ottawa. Retrieved from https://www12.statcan.gc.ca/census-recensement/2021/ref/dict/az/Definition-eng.cfm?ID=geo042.Google Scholar
Stockwell-Smith, G., Kellett, U., & Moyle, W. (2010). Why carers of frail older people are not using available respite services: An Australian study. Journal of Clinical Nursing, 19(13–14), 2057. https://doi.org/10.1111/j.1365-2702.2009.03139.xCrossRefGoogle Scholar
Sun, F. (2014). Caregiving stress and coping: A thematic analysis of Chinese family caregivers of persons with dementia. Dementia (London), 13(6), 803–818. https://doi.org/10.1177/1471301213485593CrossRefGoogle ScholarPubMed
Tajfel, H. (1978). Differentiation between social groups: Studies in the social psychology of intergroup relations. Published in cooperation with European Association of Experimental Social Psychology by Academic Press.Google Scholar
Terry, G., Hayfield, N., Clarke, V., & Braun, V. (2017). Thematic analysis. In Willig, C. & Rogers, W. S. (Eds.), The SAGE handbook of qualitative research in psychology (pp.17–37). SAGE.CrossRefGoogle Scholar
Tracy, S. J. (2010). Qualitative quality: Eight “big-tent” criteria for excellent qualitative research. Qualitative Inquiry, 16(10), 837–851. https://doi.org/10.1177/1077800410383121CrossRefGoogle Scholar