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Family caregivers voice their needs: A photovoice study

Published online by Cambridge University Press:  20 May 2014

Jennifer Angelo  and
Richard Egan
Jennifer Angelo*
Affiliation:
Otago Community Hospice, Dunedin, New Zealand, and School of Physiotherapy, Division of Health Sciences, University of Otago, Otago, New Zealand
Richard Egan
Affiliation:
Cancer Society Social and Behavioural Research Unit, Te Hunga Rangahau Ārai Mate Pukupuku, Department of Preventive and Social Medicine, University of Otago Medical School, Dunedin, New Zealand
*
Address correspondence and reprint requests to: Jennifer Angelo, Otago Community Hospice, 293 North Road, North East Valley, Dunedin 9010, New Zealand. E-mail: jangelo@jangelo.com
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Abstract

Objective:

Caregivers often are unprepared for their role yet serve as the frontline in the provision of palliative care services. The aim of our study was to explore family caregivers' experiences from their perspective as they cared for dying relatives.

Method:

Using the Photovoice methodology, ten unpaid family caregivers took photographs depicting issues they experienced as informal caregivers of an ill family member who had less than a year to live. Each participant met with the first author individually four to six times and explained their role as caregiver through photographs and stories.

Results:

The results were clustered into seven themes: physical demands, emotional/spiritual stress, preparing for the future, securing help, medication management, navigating the agencies, and relationships.

Significance of results:

Caregivers perform a variety of tasks, often under stress. This study highlights the main areas where problems lie and the areas that palliative care health professionals need to be aware of so they can assist and educate caregivers, with the goal of finding solutions to the burdens of care. The themes were found to be intertwined, showing the complexity of the caregiving role.

Keywords

CaregiversFamily supportPalliative carePhotovoice
Type
Original Articles
Information
Palliative & Supportive Care , Volume 13 , Issue 3 , June 2015 , pp. 701 - 712
Copyright
Copyright © Cambridge University Press 2014 

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References

REFERENCES

Age UK (2011). Later life in the United Kingdom. Available at http://www.ageuk.org.uk/Documents/EN-GB/Factsheets/Later_Life_UK_factsheet.pdf?dtrk=true.Google Scholar
Andershed, B. (2006). Relatives in end-of-life care, part 1: A systematic review of the literature of the five last years, January 1999–February 2004. Journal of Clinical Nursing, 15(9), 1158–1169.Google Scholar
Andonian, L. & MacRae, A. (2011). Well older adults within an urban context: Strategies to create and maintain social participation. British Journal of Occupational Therapy, 74(1), 2–11.Google Scholar
Angelo, J., Egan, R. & Reid, K. (2013). Essential knowledge for family caregivers: A qualitative study. International Journal of Palliative Nursing, 19(8), 383–388.Google Scholar
Aoun, S.M., Krisjanson, L.J., Currow, D.C., et al. (2005). Caregiving for the terminally ill: At what cost? Palliative Medicine, 19, 551–555.Google Scholar
Applebaum, A.J. & Breitbart, W. (2013). Care for the cancer caregiver: A systematic review. Palliative & Supportive Care, 11, 231–252.Google Scholar
Applebaum, A.J., Farran, C.J., Mariziliano, A.M., et al. (2013). Preliminary study of themes of meaning and psychological service use among informal cancer caregivers. Palliative Medicine, 13, 1–10.Google Scholar
Atlas.ti (Producer) (2009). Qualitative data analysis software. Retrieved from www.atlasti.com.Google Scholar
Australia Institute of Health and Welfare (AIHW) (2003). Australia's welfare 2003. Canberra: AIHW. Available at http://www.aihw.gov.au/publication-detail/?id=6442467539.Google Scholar
Barazzetti, G., Borreani, C., Miccinesi, G., et al. (2010). What “best practice” could be in palliative care: An analysis of statements on practice and ethics expressed by the main health organizations. BMC Palliative Care, 9, 1.Google Scholar
Barton, J., Grudzen, M. & Zielske, R. (2003). Vital connections in long-term care: Spiritual resources for staff and residents. East Peoria, IL: Versa Press.Google Scholar
Beach, S.R., Schulz, R. & Yee, J.L. (2000). Negative and positive health effects of caring for disabled spouse: Longitudinal findings from the caregiver health effects study. Psychology and Aging, 15(2), 259–271.Google Scholar
Bevan, J.L. & Pecchioni, L.L. (2008). Understanding the impact of family caregiver cancer literacy on patient health outcomes. Patient Education and Counseling, 71(3), 356–364.Google Scholar
Bingley, A. & Clark, D. (2008). Palliative care developments in the region represented by the Middle East cancer consortium: A review and comparative analysis. Bethesda, MD: National Cancer Institute, U.S. Department of Health and Human Services, National Institutes of Health.Google Scholar
Broback, G. & Bertero, C. (2003). How next of kin experience palliative care of relatives at home. European Journal of Cancer Care, 12(4), 339–346.Google Scholar
Bukowski, K. & Buetow, S. (2011). Making the invisible visible: A Photovoice exploration of homeless women's health and lives in central Auckland. Social Science & Medicine, 72(5), 739–746.Google Scholar
Caelli, K., Ray, L. & Mill, J. (2003). “Clear as mud”: Toward greater clarity in generic qualitative research. International Journal of Qualitative Methods, 2(2), 1–13.Google Scholar
Cain, R., MacLean, M. & Sellick, S. (2004). Giving support and getting help: Informal caregivers' experiences with palliative care services. Palliative & Supportive Care, 2(3), 265–272.Google Scholar
Carers Australia (2010). The economic value of informal care in 2010. Available at http://www.carersaustralia.com.au/storage/Economic-Value-Informal-Care-Oct-2010.pdf.Google Scholar
Carlsson, B. (2001). Depicting experiences. Scandinavian Journal of Educational Research, 45(2), 125–144.Google Scholar
Cherrington, L. (2009). Te hohounga: Mai i te tirohanga māori, the process of reconciliation: Towards a māori view. Wellington: New Zealand: Ministry of Social Development. Available at http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=2&ved=0CDYQFjAB&url=http%3A%2F%2Fwww.msd.govt.nz%2Fdocuments%2Fabout-msd-and-our-work%2Fpublications-resources%2Fresearch%2Fconduct-problems-best-practice%2Fcherrington-report-dec-2010.doc&ei=m8OSUvSEK8SOigf834H4CQ&usg=AFQjCNEZIdLp-pOnAy9t7JMLUo8jh0LjWg&sig2=QFtSGLI5ddgVaiZaGxA4xA&bvm=bv.56988011,d.aGc.Google Scholar
Connell, T., Fernandez, R.S., Tran, D., et al. (2013). Quality of life of community-based palliative care clients and their caregivers. Palliative & Supportive Care, 11, 323–330.Google Scholar
Demiris, G., Oliver, D.P. & Wittenberg-Lyles, E. (2009). Assessing caregivers for team interventions (ACT): A new paradigm for comprehensive hospice quality care. The American Journal of Hospice & Palliative Care, 26(2), 128–134.Google Scholar
Donelan, K., Hill, C.A., Hoffman, C., et al. (2002). Challenged to care: Informal caregivers in a changing health system. Health Affairs, 21(4), 222–231.Google Scholar
Durie, M. (2001). Māori ora: The dynamics of māori health. Australia: Oxford University Press.Google Scholar
Elde, C. (1986). The use of multiple group therapy in support groups for grieving families: A model of bereavement support for a hospice program. The American Journal of Hospice & Palliative Care, 3, 27–31.Google Scholar
Emlet, C.A. (1996). Assessing the informal caregiver: Team member or hidden patient? Home Care Provider, 1(5), 255–275.Google Scholar
Empeno, J. (2013). The impact of additional support services on caregivers of hospice patients and hospice social workers. Omega, 67 (1–2), 53–61.Google Scholar
Ferrario, R.S., Cardillo, F., Vicario, F., et al. (2004). Advanced cancer at home: Caregiving and bereavement. Palliative Medicine, 18, 129–136.Google Scholar
Funk, L., Stajduhar, K., Toye, C., et al. (2010). Home-based family caregiving at the end of life, part 2: A comprehensive review of published qualitative research (1998–2008). Palliative Medicine, 24(6), 594–607.Google Scholar
Given, B.A., Sherwood, P. & Given, C.W. (2011). Support of caregivers of cancer patients: Transition after active treatment. Cancer Epidemiology, Biomarkers & Prevention, 20, 2015–2021.Google Scholar
Gold, S.J. (2004). Using photography in studies of immigrant communities. American Behavioral Scientist, 47, 1551–1572.Google Scholar
Gomes, B., Calanzani, N., Curial, V., et al. (2013). Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers. The Cochrane Database Systematic Reviews, 6, CD007760.Google Scholar
Grande, G. & Ewing, G. (2008). Death at home unlikely if informal carers prefer otherwise: Implications for policy. Palliative Medicine, 22(8), 971–972.Google Scholar
Grande, G.E. & Ewing, G. (2009). Informal carer bereavement outcome: Relation to quality of end of life support and achievement of preferred place of death. Palliative Medicine, 23(3), 248–256.Google Scholar
Hagen, N.A., Addington-Hall, J., Sharpe, M., et al. (2006). The Birmingham International Workshop on Supportive, Palliative, and End-of-Life Care Research. Cancer, 107(4), 874–881.Google Scholar
Harding, R., Epiphaniou, E., Hamilton, D., et al. (2012). What are the perceived needs and challenges of informal caregivers in home cancer palliative care? Qualitative data to construct a feasible psycho-educational intervention. Supportive Care in Cancer, 20, 1975–1982.Google Scholar
Harper, D. (2002). Talking about pictures: A case for photo elicitation. Visual Studies, 17(1), 13–26.Google Scholar
Henriksson, A. & Årestedt, K. (2013). Exploring factors and caregiver outcomes associated with feelings of preparedness for caregiving in family caregivers in palliative care: A correlational, cross-sectional study. Palliative Medicine, 27, 639–646.Google Scholar
Hirdes, J.P., Freeman, S., Smith, T.F., et al. (2012). Predictors of caregiver distress among palliative home care clients in Ontario: Evidence based on the interRAI palliative care. Palliative & Supportive Care, 10(3), 155–163.Google Scholar
Hopkinson, J.B., Brown, J.C., Okamoto, I., et al. (2012). The effectiveness of patient–family carer (couple) intervention for the management of symptoms and other health-related problems in people affected by cancer: A systematic literature search and narrative review. Journal of Pain and Symptom Management, 43(1), 111–114.Google Scholar
Hudson, P.L., & Aranda, S. (2013). The Melbourne family support program: Evidence-based strategies that prepare family caregivers for supporting palliative care patients. BMJ Supportive & Palliative Care, 1–7. Available at http://spcare.bmj.com/content/early/2013/06/04/bmjspcare-2013-000500.abstract.Google Scholar
Hudson, P., Aranda, S. & McMurray, N. (2002). Intervention development for enhanced lay palliative caregiver support: The use of focus groups. European Journal of Cancer Care, 11(4), 262–270.Google Scholar
Hudson, P.L., Aranda, S. & Hayman-White, K. (2005). A psycho-educational intervention for family caregivers of patients receiving palliative care: A randomized controlled trial. Journal of Pain and Symptom Management, 30(4), 329–341.Google Scholar
Hudson, P.L., Trauer, T., Kelly, B., et al. (2013). Reducing the psychological distress of family caregivers of home-based palliative care patients: Short-term effects from a randomised controlled trial. Psycho-Oncology, 22(9), 1987–1993.Google Scholar
Hurworth, R. (2003). Photo-interviewing for research. Social Research Update, 40(1), 1–4.Google Scholar
Ingleton, C., Payne, S., Nolan, M., et al. (2003). Respite in palliative care: A review and discussion of the literature. Palliative Medicine, 17(7), 567–575.Google Scholar
Ipsos MORI & Macmillan Cancer Support (2011). More than a million: Understanding the UK's carers of people with cancer. Available at http://www.macmillan.org.uk/Aboutus/News/Latest_News/Overamillioncancercarersmissoutonvitalsupport.aspx.Google Scholar
Jorgensen, D., Parsons, M., Jacobs, S., et al. (2010). The New Zealand informal caregivers and their unmet needs. New Zealand Medical Journal, 123, 9–16.Google Scholar
Keleher, H. & Armstrong, R. (2005). Evidence-based mental health promotion resource. Melbourne: Department of Human Services and VicHealth.Google Scholar
Kessler, D., Peters, T.J., Lee, L., et al. (2005). Social class and access to specialist palliative care services. Palliative Medicine, 19(2), 105–110.Google Scholar
Lal, S., Jarus, T. & Suto, M.J. (2012). A scoping review of the Photovoice method: Implications for occupational therapy research. Canadian Journal of Occupational Therapy, 79(3), 181–190.Google Scholar
Letts, L. (2003). Occupational therapy and participatory research: A partnership worth pursuing. American Journal of Occupational Therapy, 57(1), 77–87.Google Scholar
Lin, W.C. & Tsao, C.J. (2004). Information needs of family caregivers of terminal cancer patients in Taiwan. The American Journal of Hospice & Palliative Care, 21(6), 438–444.Google Scholar
Linderholm, M. & Friedrichsen, M. (2010). A desire to be seen: Family caregivers' experiences of their caring role in palliative home care. Cancer Nursing, 33(1), 28–36.Google Scholar
Lindridge, A. (2007). Keeping the faith. London: Mental Health Foundation.Google Scholar
MacKinlay, E. (2006). Spiritual care recognizing spiritual needs of older adults. Journal of Religion, Spirituality & Aging, 18(2/3), 59–71.Google Scholar
Mahood, A., Chaudhury, H., Michael, Y.L., et al. (2012). A Photovoice documentation of the role of neighborhood physical and social environments in older adults' physical activity in two metropolitan areas in North America. Social Science & Medicine, 74, 1180–1192.Google Scholar
Marshall, C. & Rossman, G.B. (1999). Designing qualitative research. Thousand Oaks, CA: Sage.Google Scholar
Milligan, C. (2006). Caring for older people in the 21st century: “Notes from a small island.” Health & Place, 12(3), 320–331.Google Scholar
Ministry of Business Innovation and Employment (2010). Labour market characteristics of unpaid carers. Wellington:: Department of Labour. Available at http://www.dol.govt.nz/publications/research/characteristics-of-unpaid-carers/summary.asp.Google Scholar
Moberg, D.O. (2002). Assessing and measuring spirituality: Confronting dilemmas of universal and particular evaluative criteria. Journal of Adult Development, 9(1), 47–60.Google Scholar
Moore, G., Collins, A., Brand, C., et al. (2013). Palliative and supportive care needs of patients with high-grade glioma and their carers: A systematic review of qualitative literature. Patient Education and Counseling, 91, 141–153.Google Scholar
Morris, S.M. & Thomas, C. (2002). The need to know: Informal carers and information. European Journal of Cancer Care, 11(3), 183–187.Google Scholar
National Alliance for Caregiving and AARP (2004). Caregiving in the U.S. Available at http://www.caregiving.org/data/04finalreport.pdf.Google Scholar
National Institutes of Health (2004). Statement on improving end-of-life care. Bethesda, MD: NIH. Available at http://consensus.nih.gov/2004/2004EndOfLifeCareSOS024html.htm.Google Scholar
Norfolk, D. (2000). The therapeutic garden. New York: Bantam.Google Scholar
Northouse, L., Williams, A., Given, B., et al. (2012). Psychosocial care for family caregivers of patients with cancer. Journal of Clinical Oncology, 30(11), 1227–1234.Google Scholar
Payne, S. & Hudson, P. (2008). Assessing the family and caregivers. In Palliative medicine, 1st ed. Walsh, C.A. et al. (eds.), pp. 320–325. New York: Elsevier.Google Scholar
Pillow, W.S. (2003). Confession, catharsis, or cure? Rethinking the uses of reflexivity as a methodological power in qualitative research. Qualitative Studies in Education, 16, 175–196.Google Scholar
Radley, A. & Taylor, D. (2003). Images of recovery: A photo-elicitation study on the hospital ward. Qualitative Health Research, 13(1), 77–99.Google Scholar
Rando, T. (1986). Loss and anticipatory grief. Lanham, MD: Lexington Books.Google Scholar
Romanow, R.J. (2002). Building on values: The future of health care in Canada. Ottawa: Government of Canada.Google Scholar
Rose, G. (1996). Teaching visualized geographies: Towards a methodology for the interpretation of visual materials. Journal of Geography in Higher Education, 20(3), 281–294.Google Scholar
Rush, K.L., Murphy, M.A. & Kozak, J.F. (2012). A Photovoice study of older adults' conceptualizations of risk. Journal of Aging Studies, 26(4), 448–458.Google Scholar
Sekelja, N., Butow, P.N. & Tattersall, M.H. (2010). Bereaved cancer carers' experience of and preference for palliative care. Supportive Care in Cancer, 18(9), 1219–1228.Google Scholar
Stajduhar, K., Allan, D.E., Cohen, S.R., et al. (2008). Preferences for location of death of seriously ill hospitalized patients: Perspectives from Canadian patients and their family caregivers. Palliative Medicine, 22(1), 85–88.Google Scholar
Stajduhar, K., Funk, L., Toye, C., et al. (2010). Home-based family caregiving at the end of life, part 1: A comprehensive review of published quantitative research (1998–2008). Palliative Medicine, 24(6), 573–593.Google Scholar
Stambor, Z. (2006). Caring for caregivers. Monitor on Psychology, 37(10), 46–47.Google Scholar
Tamayo, G.J., Broxson, A., Munsell, M., et al. (2010). Caring for the caregiver. Oncology Nursing Forum, 37(1), E50–E57.Google Scholar
Tang, W.R. (2009). Hospice family caregivers' quality of life. Journal of Clinical Nursing, 18(18), 2563–2572.Google Scholar
Tsigaroppoulos, T., Mazaris, E., Chatzidarellis, E., et al. (2009). Problems faced by relatives caring for cancer patients at home. International Journal of Nursing Practice, 15(1), 1–6.Google Scholar
Wang, C. (1999). Photovoice: A participatory action research strategy applied to women's health. Journal of Women's Health, 8(2), 185–192.Google Scholar
Wang, C. & Burris, M.A. (1997). Photovoice: Concept, methodology, and use for participatory needs. Health Education & Behavior, 24(3), 369–387.Google Scholar
Yi, J. & Zebrack, B. (2010). Self-portraits of families with young adult cancer survivors: Using Photovoice. Journal of Psychosocial Oncology, 28(3), 219–243.Google Scholar