Needs of caregivers of patients receiving in-home palliative and end-of-life care

Elizabeth Pepin, Johanne Hébert

Abstract


Home support for patients receiving in-home palliative and end-of-life care (PELC) is greatly dependent on the daily presence of caregivers and their involvement in care delivery. However, the needs of caregivers throughout the care trajectory of a loved one receiving in-home PELC are still relatively unknown.

Objectives and methodology: This descriptive qualitative study focuses on the role of caregivers who have cared for a person receiving in-home PELC with the goal of describing their needs throughout the care trajectory. As part of this process, 20 caregivers took part in semi-directed interviews.

Results and discussion: This study sheds light on the multiple needs of caregivers of loved ones receiving in-home PELC. These informational, emotional, and psychosocial needs show that caregivers experience changes in their relationship with their loved one. Spiritual needs were expressed through the meaning ascribed to the home support experience. And the practical needs expressed by participants highlight the importance of round-the-clock access to PELC services and the essential importance of nursing support.

Conclusion: The needs of caregivers of loved ones receiving in-home PELC are not being met to a satisfactory degree. It is important to consider these needs in the care trajectory, alongside the needs of the patients themselves, in order to improve the support experience leading up to the bereavement period.

Keywords: transition, needs, caregivers, palliative and end-of-life care, nursing role


Full Text:

PDF

References


Aoun, S., Deas, K., Kristjanson, L. J., & Kissane, D. W. (2017). Identifying and addressing the support needs of family caregivers of people with motor neurone disease using the Carer Support Needs Assessment Tool. Palliative & Supportive Care, 15(1), 32–43. https://doi.org/10.1017/S1478951516000341

ASCP/CHPCA. Association canadienne de soins palliatifs/Canadian Hospice Palliative Care Association & La Coalition pour des soins de fin de vie de qualité au Canada. (2015). Cadre national « Aller de l’avant » : feuille de route pour l’intégration de l’approche palliative, Initiative Aller de l’avant : des soins qui intègrent l’approche palliative. Gouvernement du Canada

Carlander, I., Sahlberg-Blom, E., Hellström, I., & Ternestedt, B.-M. (2011). The modified self: Family caregivers’ experiences of caring for a dying family member at home. Journal of Clinical Nursing, 20(7-8), 1097–1105. https://doi.org/10.1111/j.1365-2702.2010.03331.x

Ewing, G., & Grande, G. (2012). Development of a Carer Support Needs Assessment Tool (CSNAT) for end-of-life care practice at home: A qualitative study. Palliative Medicine, 27(3), 244–256. https://doi.org/10.1177/0269216312440607

Fillion, L., Veillette, A., Wilson, D., Dumont, S., & Lavoie, S. (2009). Les racines de la « Belle Mort » : Une étude ethnographique en milieu rural au Québec. Les Cahiers francophones de soins palliatifs, 9, 61–74.

Fitch, M. I., Porter, H. B., & Page, B. D. (2008). Supportive care framework: A foundation for person-centred care. Pappin Communications.

Funk, L. M., Stajduhar, K. I., & Outcalt, L. (2015). What family caregivers learn when providing care at the end of life: A qualitative secondary analysis of multiple datasets. Palliative & Supportive Care, 13(3), 425–433. https://doi.org/10.1017/S1478951513001168

Gomes, B., & Higginson, I. J. (2006). Factors influencing death at home in terminally ill patients with cancer: systematic review. British Medical Journal (International Edition), 332(7540), 515–521. https://doi.org/10.1136/bmj.38740.614954.55

Harding, R., Epiphaniou, E., Hamilton, D., Bridger, S., Robinson, V., George, R., ... Higginson, I. (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(9), 1975–1982. https://doi.org/10.1007/s00520-011-1300-z

Hasson, F., Kernohan, W. G., McLaughlin, M., Waldron, M., McLaughlin, D., Chambers, H., & Cochrane, B. (2010). An exploration into the palliative and end-of-life experiences of carers of people with Parkinson’s disease. Palliative Medicine, 24(7), 731–736. https://doi.org/10.1177/0269216310371414

Hébert, J., Ouellet, N., Lessard, L., Babineau, L., Veillette, A.-M., & Coutu, M. (2017). Rapport de recherche : Conditions favorisant et limitant le maintien à domicile en soins palliatifs et de fin de vie sur le territoire du CISSS de Chaudière-Appalaches Québec : Centre intégré de santé et de services sociaux de Chaudière-Appalaches. https://www.cisss-ca.gouv.qc.ca/fileadmin/documents/Services_offerts/Soins_palliatifs_et_de_fin_de_vie/Projet_SPFV-I_Rapport_final_CISSS-CA_H %C3 %A9bert_et_al_2017-11-08.pdf

Holm, M., Henriksson, A., Carlander, I., Wengström, Y., & Öhlen, J. (2015). Preparing for family caregiving in specialized palliative home care: An ongoing process. Palliative & Supportive Care, 13(3), 767–775. https://doi.org/10.1017/S1478951514000558

Horseman, Z., Milton, L., & Finucane, A. (2019). Barriers and facilitators to implementing the Carer Support Needs Assessment Tool in a community palliative care setting. British Journal of Community Nursing, 24(6), 284–290. https://doi.org/10.12968/bjcn.2019.24.6.284

Johnson, A. (2015). Role of district and community nurses in bereavement care: A qualitative study. British Journal of Community Nursing, 20(10), 494–501. https://doi.org/10.12968/bjcn.2015.20.10.494

Ministère de la santé et des services sociaux (2015). Soins palliatifs et de fin de vie: Plan de développement 2015-2020. http://publications.msss.gouv.qc.ca/msss/fichiers/2015/15-828-01W.pdf

L’Appui pour les proches aidants d’aînés. (2012). Portrait statistique des proches aidants de personnes de 65 ans et plus au Québec, 2012. Montréal, Québec. https://www.lappui.org/content/download/10915/file/2016_Portrait %20statistique.pdf

Légis Québec. (2018). Loi concernant les soins de fin de vie. Québec : Gouvernement du Québec. http://legisquebec.gouv.qc.ca/fr/ShowDoc/cs/S-32.0001

Mason, N., & Hodgkin, S. (2019). Preparedness for caregiving: A phenomenological study of the experiences of rural Australian family palliative carers. Health & Social Care in the Community. https://doi.org/10.1111/hsc.12710

Meleis, A. I. (2010). Transitions theory: Middle range and situation specific theories in nursing research and practice. Springer Publishing Company.

Miles, M. B., & Huberman, A. M. (2003). Analyse des données qualitatives. De Boeck Supérieur.

OMS/WHO. Organisation mondiale de la Santé/World Health Organization (2018). Soins palliatifs http://www.who.int/fr/news-room/fact-sheets/detail/palliative-care

Penrod, J., Hupcey, J. E., Shipley, P. Z., Loeb, S. J., & Baney, B. (2012). A model of caregiving through the end of life: Seeking normal. Western Journal of Nursing Research, 34(2), 174–193. https://doi.org/10.1177/0193945911400920

Robinson, C. A., Bottorff, J. L., McFee, E., Bissell, L. J., & Fyles, G. (2017). Caring at home until death: Enabled determination. Supportive Care in Cancer, 25(4), 1229–1236. https://doi.org/10.1007/s00520-016-3515-5

Seamark, D., Blake, S., Brearley, S. G., Milligan, C., Thomas, C., Turner, M., ... Payne, S. (2014). Dying at home: A qualitative study of family carers’ views of support provided by GPs community staff. The British Journal of General Practice: The Journal of the Royal College of General Practitioners, 64(629), 796–803. https://doi.org/10.3399/bjgp14X682885

Sheehy-Skeffington, B., McLean, S., Bramwell, M., O’Leary, N., & O’Gorman, A. (2014). Caregivers experiences of managing medications for palliative care patients at the end of life: a qualitative study. The American Journal Of Hospice & Palliative Care, 31(2), 148–154. https://doi.org/10.1177/1049909113482514

SCC/CCS. Société canadienne du cancer/Canadian Cancer Society(2013). Soins de fin de vie au Québec. Priorité aux soins palliatifs : accès, temps, lieu. (Mémoire). Société canadienne du cancer – division Québec, Québec.

Soroka, J. T., Froggatt, K., & Morris, S. (2018). Family caregivers’ confidence caring for relatives in hospice care at home: An exploratory qualitative study. The American Journal of Hospice & Palliative Care, 35(12), 1540–1546. https://doi.org/10.1177/1049909118787779

Statistique Canada. (2019). Tableau 13-10-0715-01 Décès, selon le lieu de décès (en milieu hospitalier ou ailleurs qu’en milieu hospitalier) : Gouvernement du Canada. https://www150.statcan.gc.ca/t1/tbl1/fr/tv.action?pid=1310071501&pickMembers %5B0 %5D=1.6

Stewart, A. L., Teno, J., Patrick, D. L., & Lynn, J. (1999). The concept of quality of life of dying persons in the context of health care. Journal of Pain and Symptom Management, 17(2), 93–108.

Totman, J., Pistrang, N., Smith, S., Hennessey, S., & Martin, J. (2015). ‘You only have one chance to get it right’: A qualitative study of relatives’ experiences of caring at home for a family member with terminal cancer. Palliative Medicine, 29(6), 496–507. https://doi.org/10.1177/0269216314566840

Wahid, A. S., Sayma, M., Jamshaid, S., Kerwat, D. A., Oyewole, F., Saleh, D., ... Payne, S. (2018). Barriers and facilitators influencing death at home: A meta-ethnography. Palliative Medicine, 32(2), 314–328. https://doi.org/10.1177/0269216317713427

Wilson, E., Caswell, G., Turner, N., & Pollock, K. (2018). Managing medicines for patients dying at home: A review of family caregivers’ experiences. Journal of Pain & Symptom Management, 56(6), 962–974. https://doi.org/10.1016/j.jpainsymman.2018.08.019


Refbacks

  • There are currently no refbacks.


Bookmark and Share