Skip to main content Accessibility help
×
×
Home

An Examination of Family Caregiver Experiences during Care Transitions of Older Adults*

  • Justine L. Giosa (a1), Paul Stolee (a1), Sherry L. Dupuis (a2), Steven E. Mock (a1) (a2) and Selena M. Santi (a1)...
Abstract

This study explored informal family caregiver experiences in supporting care transitions between hospital and home for medically complex older adults. Using a qualitative, grounded-theory approach, in-depth semi-structured interviews were conducted with community and resource case managers, as well as with informal caregivers of older hip-fracture and stroke patients, and of those recovering from hip replacement surgery. Six properties characterizing caregiver needs in successfully transitioning care between hospital and home were integrated into a theory addressing both a transitional care timeline and the emotional journey. The six properties were (1) assessment of unique family situation; (2) practical information, education, and training; (3) involvement in planning process; (4) agreement between formal and informal caregivers; (5) time to make arrangements in personal life; and (6) emotional readiness. This work will support research and clinical efforts to develop more well-informed and relevant interventions to most appropriately support patients and families during transitional care.

Cette étude a examiné les expériences informelles des aidants familiaux en soutenant les transitions de soins entre l’hôpital et la maison pour les adultes âgés avec des conditions médicales complexes. En utilisant une approche basée sur la théorie ancrée qualitative, une série d’entretiens semi-structurés a été realisée avec la communauté et des gestionnaires de cas et de ressources, ainsi qu’avec des aidants naturels de patients âgés souffrant de fractures de la hanche et des accidents vasculaires cérébraux et ceux qui se remettaient d’une chirurgie pour remplacement de la hanche. Six propriétés qui caractérisent les besoins des aidants naturels de fournir des soins de transition entre l’hôpital et la maison avec succès ont été intégrées dans une théorie qui adressent (1) l’horaire des soins transitoires et (2) le passage émotionnel. Ces six propriétés comprennent : (1) l’évaluation des situations familiales; (2) des informations sur les pratiques; (3) l’éducation et la formation; (4) l’accord entre les aidants officiels et informels; (5) le temps de prendre des dispositions pour la vie personnelle, et (6) la préparation affective et émotionelle. Cette étude soutiendra le développement d’interventions mieux informées et plus pertinentes, qui offrent le soutien le plus approprié pour les patients et leurs familles pendant les soins de transition.

Copyright
Corresponding author
La correspondance et les demandes de tirés-à-part doivent être adressées à : / Correspondence and requests for offprints should be sent to: Paul Stolee, Ph.D. School of Public Health and Health Systems University of Waterloo 200 University Avenue West Waterloo, ON N2L 3G1 (stolee@uwaterloo.ca)
Footnotes
Hide All
*

This study was funded by an Emerging Team grant from the Canadian Institutes of Health Research. Justine Giosa was also supported by the Canadian Institutes of Health Research (Sir Frederick Banting and Charles Best Canada Graduate Scholarship Master’s Award). We are grateful to the family caregivers and health care providers who participated in this study, to Heather Drouin for assisting with the formatting and referencing of the manuscript, and to the members of the InfoRehab research team for their support and advice.

Footnotes
References
Hide All
Brown-Williams, H., Neuhauser, L., Ivey, S., Graham, C., Poor, S., Tseng, W., et al. (2006). From hospital to home: Improving transitional care for older adults. Berkeley, CA: Health Research for Action, University of California.
Bull, M. J. (1990). Factors influencing family caregiver burden and health. Western Journal of Nursing Research, 12(6), 758770, discussion 771–776.
Cameron, J. I., & Gignac, M. A. M. (2008). “Timing it right”: A conceptual framework for addressing the support needs of family caregivers to stroke survivors from the hospital to the home. Patient Education and Counselling, 70, 305314.
Canadian Association of Retired Persons. (1999). Putting a face on homecare: CARP’s national forum on homecare: Focusing on the informal caregiver. Kingston, ON: Queen’s Health Policy Research Unit.
Canadian Caregiver Coalition. (2008). A framework for a Canadian caregiver strategy. Retrieved 28 January 2010 from http://www.ccc-ccan.ca/media.php?mid=229.
Canadian Heart and Stroke Foundation. (2013). Statistics. Heart disease, stroke, and healthy living: The Heart and Stroke Foundation of Canada. Retrieved March 14, 2013, fromhttp://www.heartandstroke.com/site/c.ikIQLcMWJtE/b.3483991/k.34A8/Statistics.htm.
Center on Aging Society. (2005). How do family caregivers fare? A closer look at their experiences. (Data Profile, Number 3). Washington, DC: Georgetown University.
Charmaz, K. (2006). Constructing grounded theory: A practical guide through qualitative analysis. Thousand Oaks, CA: Sage.
Coleman, E. A. (2003). Falling through the cracks: Challenges and opportunities for improving transitional care for persons with continuous complex care needs. Journal of the American Geriatrics Society, 51, 549555.
Coleman, E. A., & Berenson, R. A. (2004). Lost in transition: Challenges and opportunities for improving the quality of transitional care. Annals of Internal Medicine, 141, 533536.
Coleman, E. A., & Boult, C. (2003). Improving the quality of transitional care for persons with complex care needs. Journal of the American Geriatrics Society, 51(4), 556557.
Community Care Access Centre. (2013). Homepage. Retrieved March 14, 2013, fromwww.ccac-ont.ca.
Corcoran, M. A. (2011). Caregiving styles: A cognitive and behavioral typology associated with dementia family caregiving. The Gerontologist, 51(4), 463472.
Covinsky, K. E., Palmer, R. M., & Fortinsky, R. H. (2003). Loss of independence in activities of daily living in older adults hospitalized with medical illnesses: Increased vulnerability with age. Journal of American Geriatrics Society, 51, 451458.
Cranswick, K. (1997). Canada’s caregivers, Canadian Social Trends, Winter, 2–6.
De Luise, C., Brimacombe, M., Pedersen, L., & Sorensen, H. T. (2008). Comorbidity and mortality following hip fracture: a population-based cohort study. Aging Clinical and Experimental Research, 20(5), 412418.
Elliott, N. I., & Lazenbatt, A. (2005). How to recognise a quality grounded theory research study. Australian Journal of Advanced Nursing, 22(3), 4852.
Gilleard, C., & Higgs, P. (2011). Frailty, disability and old age: A re-appraisal. Health, 15(5), 475490.
Given, B., Sherwood, P. R., & Given, C. W. (2008). What knowledge and skills do caregivers need? American Journal of Nursing, 108(9), 2834.
Glaser, B. (1998). Doing grounded theory: Issues and discussions. Mill Valley, CA: Sociology Press.
Glaser, B. (2001). The grounded theory perspective I: Conceptualization contrasted with description. Mill Valley, CA: Sociology Press.
Glaser, B., & Strauss, A. L. (1967). The discovery of grounded theory: Strategies for qualitative research. New York: Aldine.
Goulding, C. (1998). Grounded theory: the missing methodology on the interpretivist agenda. Qualitative Market Research: An International Journal, 1(1), 5057.
Graham, C. L., Ivey, S. L., & Neuhauser, L. (2009). From hospital to home: Assessing the transitional care needs of vulnerable seniors. The Gerontologist, 49(1), 2333.
Hakim, A. M., Silver, F., & Hodgson, C. (1998). Organized stroke care: A new era in stroke prevention and treatment. Canadian Medical Association Journal, 159(6 Suppl), S1.
Han, B., & Haley, W. E. (1999). Family caregiving for patients with stroke. Stroke, 30, 14781485.
Hewitt, M., Rowland, J. H., & Yancik, R. (2003). Cancer survivors in the United States: Age, health, and disability. The Journals of Gerontology. Series A, Biological Sciences and Medical Sciences, 58(1), 8291.
Hirdes, J. P. (2006). Addressing the health needs of frail elderly people: Ontario’s experience with an integrated health information system. Age and Ageing, 35(4), 329331.
King, R. B., & Semik, P. E. (2006). Stroke caregiving: Difficult times, resource use, and needs during the first 2 years. Journal of Gerontological Nursing, 32(4), 3744.
Knoefel, F., Helliwell, B., Borrie, M. J., Seabrook, J. A., Stolee, P., & Wells, J. L. (2003). A comparison of functional and medical complexity in geriatric and physical medicine rehabilitation in-patients. Geriatrics Today: Journal of the Canadian Geriatrics Society, 6(2), 9094.
Krefting, L. (1991). Rigor in qualitative research: The assessment of trustworthiness. The American Journal of Occupational Therapy, 45(3), 214222.
Kripalani, S., Jackson, A. T., Schnipper, J. L., & Coleman, E. A. (2007). Promoting effective transitions of care at hospital discharge: A review of key issues for hospitalists. Journal of Hospital Medicine, 2, 314323.
Leff, B. (2009). Defining and disseminating the hospital-at-home model. Canadian Medical Association Journal, 180(2), 156157.
Levine, C. (2000). Rough crossings: Family caregivers’ odysseys through the health care system. New York, NY: United Hospital Fund.
Levine, C., Halper, D., Peist, A., & Gould, D.A. (2010). Bridging troubled waters: Family caregivers, transitions, and long-term care. Health Affairs, 29(1), 116124.
Lindlof, T. R., & Taylor, B. C. (2002). Qualitative communication research methods (2nd ed.). Thousand Oaks, CA: Sage.
Local Health Integration Network. (2013). Aging at Home Strategy: Ontario’s Local Health Integration Networks. Retrieved 30 April 2013 from http://www.lhins.on.ca/page.aspx?id=880.
Lyons, A. (1997). Clinical outcomes and treatment of hip fractures. The American Journal of Medicine, 103(2), S51S64.
Marshall, M. N. (1996). Sampling for qualitative research. Family Practice, 13, 522525.
Martin, F. (2010). Comprehensive assessment of the frail older patient. British Geriatrics Society, 111. Retrieved February 8, 2011, from http://www.bgs.org.uk/index.php/topresources/publicationfind/goodpractice/195-gpgcgassessment.
McLeod, J., McMurray, J., Walker, J. D., Heckman, G. A., & Stolee, P. (2011). Care transitions for older patients with musculoskeletal disorders: Continuity from the providers’ perspective. International Journal of Integrated Care, 11, e014.
Ministry of Health and Long-Term Care. (2012) About Health Links. Retrieved March 14, 2013, fromhttp://news.ontario.ca/mohltc/en/2012/12/about-health-links.html.
Murtaugh, C. M., & Litke, A. (2002). Transitions through postacute and long-term care settings, patterns of use and outcomes for a national cohort of elders. Medical Care, 40(3), 227236.
Mynatt, E. D., & Rogers, W. A. (2001). Developing technology to support the functional independence of older adults. Ageing International, 27(1), 2441.
National Advisory Council on Aging. (1999). Challenges of an aging Canadian society: 1999 and beyond. Ottawa, ON: Minister of Public Works and Government Services Canada.
National Centre for Social and Economic Modelling (NATSEM). (2004). Who’s going to care? Informal care and an ageing population. Report prepared for Carers Australia. Retrieved February 8, 2011, fromhttp://www.bsl.org.au/pdfs/informal_care_NATSEM.pdf.
Naylor, M. D. (2000). A decade of transitional care research with vulnerable elders. Journal of Cardiovascular Nursing, 14(3), 114.
Naylor, M. D. (2002). Transitional care of older adults. Annual Review of Nursing Research, 20(1), 127147.
Naylor, M. D., Brooten, D. A., Campbell, R. L., Maislin, G., McCauley, K. M., & Schwartz, J. S. (2004). Transitional care of older adults hospitalized with heart failure: a randomized, controlled trial. Journal of the American Geriatrics Society, 52(5), 675684.
Paganini-Hill, A. (2013). Aging in place in a retirement community: 90+ year olds. Journal of Housing for the Elderly, 27(1–2), 191205.
Pandit, N. R. (1996). The creation of theory: A recent application of the grounded theory method. The Qualitative Report, 2(4), 121.
Pickett, W., Hartling, L., & Brison, R. J. (1997). Population-based study of hospitalized injuries in Kingston, Ontario, identified via the Canadian Hospitals Injury Reporting and Prevention Program. Chronic Disease Canada, 18, 6169.
Pollara Research. (2006). Health care in Canada survey. Retrieved 25 February 2010 fromwww.hcic-sssc.ca.
QSR International Pty Ltd. (2008). NVivo qualitative data analysis software, Version 8.
Roche, J. J. W., Wenn, R. T., Sahota, O., & Moran, C. G. (2005). Effect of comorbidities and postoperative complications on morality after hip fracture in elderly people: prospective observational cohort study. British Medical Journal, 331(7529), 13741376.
Schmall, V. L. (1995). Family caregiver education and training: Enhancing self-efficacy. Journal of Case Management, 4(4), 156162.
Sims-Gould, J., Byrne, K., Hicks, E., Khan, K., & Stolee, P. (2012). Examining “success” in post-hip fracture care transitions: a strengths-based approach. Journal of Interprofessional Care, 26(3), 205211.
Smale, B. J. A., & Dupuis, S. L. (2004). In their own voices: Guiding principles and strategies for change by and for dementia caregivers in Ontario. Final report prepared for the Ministry of Health and Long-term Care and the Ontario Senior’s Secretariat. Waterloo, ON: Murray Alzheimer Research and Education Program.
Spillman, B. C., & Black, K. J. (2005). Staying the course: Trends in family caregiving. Washington, DC: AARP Public Policy Institute.
Streubert-Speziale, S. H., & Carpenter, D. (2003). Qualitative research in nursing: Advancing the humanistic imperative (3rd ed.). Philadelphia, PA: Lippincott Williams & Wilkins.
Tappen, R. M. (2011). Advanced research: From theory to practice. Sudbury, MD: Jones & Bartlett Learning.
Toronto Central Local Health Integration Network. (2013). Home first – Toronto Central LHIN. Retrieved 30 April 2013 fromhttp://www.torontocentrallhin.on.ca/Page.aspx?id=5796.
Toscan, J., Mairs, K., Hinton, S., & Stolee, P. (2012) Integrated transitional care: patient, informal caregiver and health care provider perspectives on care transitions for older persons with hip fracture. International Journal of Integrated Care, 12, E13.
Toscan, J., Manderson, B., Santi, S. M., & Stolee, P. (2013). “Just Another fish in the pond”: The transitional care experience of a hip fracture patient. International Journal of Integrated Care, 13, E1E13.
United Hospital Fund. (2006). The next step in care family caregivers and health professionals working together. New York. Retrieved 28 January 2010 fromhttp://www.nextstepincare.org/.
Wells, J. L., Seabrook, J. A., Stolee, P., Borrie, M. J., & Knoefel, F. (2003). State of the art in geriatric rehabilitation, Part I: Review of frailty and comprehensive geriatric assessment. Archives of Physical Medicine and Rehabilitation, 84, 898903.
Wells, J. N., & Cagle, C. S. (2011). Family caregivers: Present and accounted for. Nursing Made Incredibly Easy, 9(2), 4651.
Wright, L. K., Hickey, J. V., Buckwalter, K. C., & Clipp, E. C. (1995). Human development in the context of aging and chronic illness: The role of attachment in Alzheimer’s disease and stroke. International Journal of Aging and Human Development, 41(2), 133150.
Zeiss, A. M., Gallagher-Thompson, D., Lovett, S., Rose, J., & McKibbin, C. (1999). Self-efficacy as a mediator of caregiver coping: Development and testing of an assessment model. Journal of Clinical Geropsychology, 5(3), 221230.
Recommend this journal

Email your librarian or administrator to recommend adding this journal to your organisation's collection.

Canadian Journal on Aging / La Revue canadienne du vieillissement
  • ISSN: 0714-9808
  • EISSN: 1710-1107
  • URL: /core/journals/canadian-journal-on-aging-la-revue-canadienne-du-vieillissement
Please enter your name
Please enter a valid email address
Who would you like to send this to? *
×

Keywords

Metrics

Full text views

Total number of HTML views: 0
Total number of PDF views: 0 *
Loading metrics...

Abstract views

Total abstract views: 0 *
Loading metrics...

* Views captured on Cambridge Core between <date>. This data will be updated every 24 hours.

Usage data cannot currently be displayed