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Uncovering the Meaning of Home Care Using an Arts-Based and Qualitative Approach*

Published online by Cambridge University Press:  11 August 2014

Kimberly Fraser ,
Mandy Archibald  and
Catherine Nissen
Kimberly Fraser*
Affiliation:
Faculty of Nursing, University of Alberta
Mandy Archibald
Affiliation:
Faculty of Nursing, University of Alberta
Catherine Nissen
Affiliation:
Faculty of Nursing, University of Alberta
*
†La correspondance et les demandes de tirés-à-part doivent être adressées à : / Correspondence and requests for offprints should be sent to:Kimberly Fraser, R.N., Ph.D.Faculty of Nursing, 3rd FloorEdmonton Clinic Health Academy11405-87 AvenueUniversity of AlbertaEdmonton, AB T6G 1C9(kimberly.fraser@ualberta.ca)
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Abstract

The need for home care is increasing in Canada, yet little is known about the home care experience of clients and their families. Uncovering the meaning of the home care experience is an important step towards developing understanding and public awareness. We explored the experiences of home care using arts-based methods and individual interviews with 11 participants (one client and 10 family caregivers). Participants discussed the numerous ways formal home care and family caregiving affected their lives, how they coped with these effects, their experiences in hospitals or assisted living facilities, and aspects of the home care experience they liked or disliked. Participants agreed that home care facilitated a better quality of life for families and clients, although they acknowledged some challenges with it. The artistic outputs produced by participants facilitated interview dialogue and fostered understanding of key themes within the research team.

Résumé

Le besoin de soins à domicile s'accroît au Canada, mais on sait peu de l'expérience de soins à domicile de clients et de leurs familles. Découvrir le sens de l'expérience de soins à domicile est une étape importante vers le développement de la compréhension et la sensibilisation du public. Nous avons exploré les expériences de soins à domicile en utilisant des méthodes axées sur les arts et des entretiens individuels avec 11 participants (un client et 10 aidants naturels). Les participants ont débattu les nombreuses façons de soins à domicile et de la famille et comment ceux-ci ont affecté leur vie, comment ils ont fait face à ces effets, leurs expériences dans les hôpitaux ou les résidences-services, et les aspects de l'expérience de soins à domicile qu'ils aimaient ou n'aimaient pas. Les participants ont convenu que les soins à domicile ont facilité une meilleure qualité de vie pour les familles et les clients, bien qu'ils reconnaissent certains défis avec eux. Les résultats artistiques produites par les participants ont facilité le dialogue de l'entrevue et ont favorisé la compréhension des thèmes clés de la recherche par l'équipe.

Keywords

agingartfamily caregiving/caregiverscommunity nursinghome careknowledge transfervieillissmentartaidants naturelssoins infirmiers communautairessoins à domiciletransfert de connaissances
Type
Articles
Information
Canadian Journal on Aging / La Revue canadienne du vieillissement , Volume 33 , Issue 3 , September 2014 , pp. 246 - 258
Copyright
Copyright © Canadian Association on Gerontology 2014 

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Footnotes

*

We gratefully acknowledge the intellectual input from the full research team for this project: Carla Ickert, Lynn Toon, Deborah Bloomer, Mandy Archibald, and Catherine Nissen. We gratefully acknowledge the Faculty of Nursing Establishment Grant from the University of Alberta for financially supporting the research, authorship, and publication of this article.

References

Archibald, M., Scott, S., & Hartling, L. (2013). Mapping the waters: A scoping review of the use of visual arts in pediatric populations with health conditions. Arts and Health: An International Journal for Research, Policy and Practice, 6(1), 1–19. doi:10.1080/17533015.2012.759980.Google Scholar
Bagnoli, A. (2009). Beyond the standard interview: The use of graphic elicitation and arts-based methods. Qualitative Research, 9(5), 547–570.CrossRefGoogle Scholar
Benzin, E., Norberg, A., & Saveman, B. (2001). The meaning of the lived experience of hope in patients with cancer in palliative home care. Palliative Medicine, 15, 117–126.Google Scholar
Bowden, G., & Bliss, J. (2008). Does using a hospital bed have an impact on the meaning of home? British Journal of Community Nursing, 13(12), 556–562.Google Scholar
Byrne, K., Sims-Gould, J., Frazee, K., & Martin-Matthews, A. (2011). “I’m satisfied, but …”: Clients’ and families’ contingent responses about home care. Home Health Care Services Quarterly, 30(4), 161–177.CrossRefGoogle ScholarPubMed
Cameron, J. I., Franche, R. L., Cheung, A. M., & Stewart, D. E. (2002). Lifestyle interference and emotional distress in family caregivers of advanced cancer patients. Cancer, 94(2), 521–527.CrossRefGoogle ScholarPubMed
Cameron, J. I., Naglie, G., Silver, F. L., & Gignac, M. A. (2012). Stroke family caregivers’ support needs change across the care continuum: A qualitative study using the timing it right framework. Disability & Rehabilitation, Early Online, 1–10.Google ScholarPubMed
Canadian Home Care Association. (2013). Portraits of home care in Canada. Retrieved 18 April 2013 fromhttp://www.cdnhomecare.ca/content.php?sec=4.Google Scholar
Canadian Institute for Health Information. (2010). Health care in Canada 2010: A decade in review. Ottawa: Canadian Institute for Health Information.Google Scholar
Cho, S. (2005). Older people’s willingness to use home care nursing services. Journal of Advanced Nursing, 51(2), 166–173.CrossRefGoogle ScholarPubMed
Cooper, J., & Urquhart, C. (2005). The information needs and information-seeking behaviours of home-care workers and clients receiving home care. Health Information and Libraries Journal, 22, 107–116.Google Scholar
Devlin, M., & McIlfatrick, S. (2010). Providing palliative and end-of-life care in the community: The role of the home-care worker. International Journal of Palliative Nursing, 16(4), 195–203.CrossRefGoogle ScholarPubMed
Emanuel, E. J., Fairclough, D. L., Slutsman, J., & Emanuel, L. L. (2000). Understanding economic and other burdens of terminal illness: The experience of patients and their caregivers. Annals of Internal Medicine, 132, 451–459.Google Scholar
Fitzsimons, D., Mullan, D., Wilson, J. S., Conway, B., Corcoran, B., Dempster, M., et al. (2007). The challenge of patients’ unmet palliative care needs in the final stages of chronic illness. Palliative Medicine, 21, 313–322.CrossRefGoogle ScholarPubMed
Fraser, K. D., & al Sayah, F. (2011). Arts-based methods in health research: A systematic review of literature. Arts & Health: An International Journal for Research, Policy and Practice, 3(2), 110–145. doi:10.1080/17533015.2011.561357.Google Scholar
Fraser, K. D., Estabrooks, C. A., Allen, M., & Strang, V. (2010). Case manager resource allocation decision-making processes: A case illustration. Care Management Journals, 11(3), 151–156.Google Scholar
Fraser, K. D., & Strang, V. (2004). Decision-making and nurse case management: A philosophical perspective. Advances in Nursing Science, 27(1), 32–43.Google Scholar
Furman, R. (2006). Poetic forms and structures in qualitative health research. Qualitative Health Research, 16, 560–566.Google Scholar
Genoud, C., & Weller, J. (2008). Protocol for the evaluation and treatment of chronic wounds in the home care setting. Schweizerische Rundschau fur Medizin – Praxis, 97(6), 317–321.Google ScholarPubMed
Gomes, B., & Higginson, I. (2006). Factors influencing death at home in terminally ill patients with cancer: Systematic review. British Medical Journal, 332(7540), 515–521.CrossRefGoogle ScholarPubMed
Gottlieb, B. H., & Wolfe, J. (2002). Coping with family caregiving to persons with dementia: A critical review. Aging & Mental Health, 6(4), 325–342.Google Scholar
Hearson, B., McClement, S., McMillan, D. E., & Harlos, M. (2011). Sleeping with one eye open: The sleep experience of family members providing palliative care at home. Journal of Palliative Care, 27(2), 69–78.Google Scholar
Jacobs, P., Dumont, S., Turcotte, V., & Anderson, D. (2011). Evaluating the economics loss of caregiving for palliative care patients. Journal of Palliative Care, 27(3), 210–215.Google Scholar
Jepson, C., McCorkle, R., Adler, D., Nuamah, I., & Lusk, E. (1999). Effects of home care on caregivers’ psychosocial status. Journal of Nursing Scholarship, 31(2), 115–120.Google ScholarPubMed
Kneebone, I. I., & Martin, P. R. (2003). Coping and caregivers of people with dementia. British Journal of Health Psychology, 8, 1–17.Google Scholar
Lau, D. T., Machizawa, S., & Doi, M. (2012). Informal and formal support among community-dwelling Japanese American elders living alone in Chicagoland: An in-depth qualitative study. Journal of Cross-Cultural Gerontology, 27, 149–161.Google Scholar
Liddy, C., Dusseault, J. J., Dahrouge, S., Hogg, W., Lemelin, J., & Humbert, J. (2008). Telehomecare for patients with multiple chronic illnesses: Pilot study. Canadian Family Physician, 54(1), 58–65.Google Scholar
Lin, P. C., & Lu, C. M. (2005). Hip fracture: Family caregivers’ burden and related factors for older people in Taiwan. Journal of Clinical Nursing, 14(6), 719–726.Google Scholar
Magnusson, A., Severinsson, E., & Lützén, K. (2002). Nurses’ views on situations related to privacy in providing home care for persons with long-term mental illness: An exploratory study. Issues in Mental Health Nursing, 23, 61–75.Google Scholar
Melin-Johansson, C., Ödling, G., Axelsson, B., & Danielson, E. (2008). The meaning of quality of life: Narrations by patients with incurable cancer in palliative home care. Palliative and Supportive Care, 6, 231–238.Google Scholar
Oliffe, J., & Bottorff, J. (2007). Further than the eye can see? Photo elicitation and research with men. Qualitative Health Research, 17(6), 850–858.CrossRefGoogle Scholar
Ornstein, K., Smith, K. L., & 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
Papastavrou, E., Charalambous, A., Tsangari, H., & Karayiannis, G. (2012). The burdensome and depressive experience of caring. Cancer Nursing, 35(3), 187–194.Google Scholar
Piat, M., Ricard, N., Sabetti, J., & Beauvais, L. (2007). The values and qualities of being a good helper: A qualitative study of adult foster home caregivers for persons with serious mental illness. International Journal of Nursing Studies, 44, 1418–1429.Google Scholar
Plank, A., Mazzoni, V., & Cavada, L. (2012). Becoming a caregiver: New family carers’ experience during the transition from hospital to home. Journal of Clinical Nursing, 21, 2072–2082.Google Scholar
Proot, I. M., Abu-Saad, H. H., Crebolder, H. F., Goldsteen, M., Luker, K. A., & Widdershoven, G. A. (2003). Vulnerability of family caregivers in terminal palliative care at home; balancing between burden and capacity. Scandinavian Journal of Caring Sciences, 17, 113–121.Google Scholar
Rothera, I., Jones, R., Harwood, R., Avery, A. J., Fisher, K., James, V., et al. (2008). An evaluation of a specialist multiagency home support service for older people with dementia using qualitative methods. International Journal of Geriatric Psychiatry, 23, 65–72.CrossRefGoogle ScholarPubMed
Sandelowski, M. (1995). Qualitative analysis: What it is and how to begin. Research in Nursing & Health, 18(4), 371–375.Google Scholar
Santos Salas, A. (2006). Nursing practices and the experience of the very ill in the home (Doctoral dissertation, University of Alberta, 2006). Dissertation Abstracts International, 64, 4.Google Scholar
Special Senate Committee on Aging. (2009). Canada’s aging population: Seizing the opportunity. Retrieved 30 November 2012, fromhttp://www.parl.gc.ca/Content/SEN/Committee/402/agei/rep/AgingFinalReport-e.pdf.Google Scholar
Stajduhar, K. I. (2003). Examining the perspectives of family members involved in the delivery of palliative care at home. Journal of Palliative Care, 19(1), 27–35.Google Scholar
Thorne, S. (2008). Interpretive description. Walnut Creek, CA: Left Coast Press.Google Scholar
Thorne, S., Kirkham, S. R., & MacDonald-Emes, J. (1997). Interpretive description: A noncategorical qualitative alternative for developing nursing knowledge. Research in Nursing & Health, 20, 169–177.Google Scholar
Thorne, S., Kirkham, S. R., & O’Flynn-Magee, K. (2004). The analytic challenge in interpretive description. International Journal for Qualitative Methods, 3(1), 1–20.Google Scholar
Williams, A. (2004). Shaping the practice of home care: Critical case studies of the significance of the meaning of home. International Journal of Palliative Nursing, 10(7), 333–342.Google Scholar
Williams, A. P., Lum, J. M., Deber, R., Montgomery, R., Kuluski, K., Peckham, A., et al. (2009). Aging at home: Integrating community-based care for older persons. Healthcare Papers, 10(1), 8–21.CrossRefGoogle ScholarPubMed
World Health Organization. (2002). The world health report: Reducing risk, promoting healthy life. Retrieved 15 August 2012, fromhttp://www.who.int/whr/2002/en/whr02_en.pdf.Google Scholar