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The influence of care place and diagnosis on care communication at the end of life: bereaved family members' perspective
Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.ORCID iD: 0000-0002-4136-7250
Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.ORCID iD: 0000-0003-2711-0245
Göteborgs universitet; Sahlgrenska universitetssjukhuset.ORCID iD: 0000-0003-2429-8705
Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.ORCID iD: 0000-0003-3660-6306
2021 (English)In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 19, no 6, p. 664-671Article in journal (Refereed) Published
Abstract [en]

OBJECTIVE: To investigate the influence of care place and diagnosis on care communication during the last 3 months of life for people with advanced illness, from the bereaved family members' perspective.

METHOD: A retrospective survey design using the VOICES(SF) questionnaire with a sample of 485 bereaved family members (aged: 20-90 years old, 70% women) of people who died in hospital was employed to meet the study aim.

RESULTS: Of the deceased people, 79.2% had at some point received care at home, provided by general practitioners (GPs) (52%), district nurses (36.7%), or specialized palliative home care (17.9%), 27.4% were cared for in a nursing home and 15.7% in a specialized palliative care unit. The likelihood of bereaved family members reporting that the deceased person was treated with dignity and respect by the staff was lowest in nursing homes (OR: 0.21) and for GPs (OR: 0.37). A cancer diagnosis (OR: 2.36) or if cared for at home (OR: 2.17) increased the likelihood of bereaved family members reporting that the deceased person had been involved in decision making regarding care and less likely if cared for in a specialized palliative care unit (OR: 0.41). The likelihood of reports of unwanted decisions about the care was higher if cared for in a nursing home (OR: 1.85) or if the deceased person had a higher education (OR: 2.40).

SIGNIFICANCE OF RESULTS: This study confirms previous research about potential inequalities in care at the end of life. The place of care and diagnosis influenced the bereaved family members' reports on whether the deceased person was treated with respect and dignity and how involved the deceased person was in decision making regarding care.

Place, publisher, year, edition, pages
2021. Vol. 19, no 6, p. 664-671
Keywords [en]
Communication, Diagnosis, End of life, Family members, Place of care
National Category
Nursing
Identifiers
URN: urn:nbn:se:esh:diva-8727DOI: 10.1017/S147895152100016XISI: 000737142900005PubMedID: 33781369OAI: oai:DiVA.org:esh-8727DiVA, id: diva2:1542070
Note

Forskningsfinansiärer:

- Ersta Sköndal Bräcke högskola

- Sven och Dagmar Saléns stiftelser

- Stiftelsen Ulrica Cronés fond

Available from: 2021-04-06 Created: 2021-04-06 Last updated: 2022-01-13Bibliographically approved
In thesis
1. Bereaved family members’ VOICES of support and care during the last three months of life for people with advanced illness
Open this publication in new window or tab >>Bereaved family members’ VOICES of support and care during the last three months of life for people with advanced illness
2021 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

This thesis is in the subject of palliative care within the research field ‘The individual in the Welfare society’. The overall aim was to investigate bereaved family members’ experiences of support and care during the last three months of life for people with advanced illness. It encompasses four studies, in study I theVOICES (SF) (Views of Informal Carers – Evaluation of Services (Short Form))questionnaire was validated, and in studies II-IV a survey design was employed using VOICES (SF). The survey sample consisted of 485 bereaved family members (20-90 years old, 70.7% women) of people who had died in one of four hospitals, in two Swedish healthcare regions, between August 2016 and April 2017. VOICES (SF) was found feasible for use in a Swedish context in study I,however, the construct of some parts in the questionnaire was found not to be optimal when used in studies II-IV. Further development and validation is, therefore, recommended. The care place/care service was central for family members’ experiences of care and support. The importance of that the ill persons received care according to their needs was stressed, but the delivery of the care -with respect, dignity and empathy - was equally important. Most of the family members were satisfied with the care; however, about a fifth were not, indicating a need for improvement. The type of care, diagnosis, length of illness, educational attainment, and the relationship between the deceased person and the family member, influenced the experiences of care. This confirms that there are potential inequalities in care at the end of life. End-of-life communication and the support given to family members was not experienced as optimal. Family members expressed the importance of healthcare staff providing them with clear information, their own difficulties in recognising imminent death, and the value of a follow-up conversation with a healthcare professional who was present at the time of death. This thesis project has provided novel and important knowledge about the content and quality of care during the last few months of life, for all groups with potential palliative care needs, hence contributing to the discourse concerning quality of care at the end of life and placing care at the end of life on the agenda of the Swedish welfare society.

Place, publisher, year, edition, pages
Stockholm: Ersta Sköndal Bräcke högskola, 2021. p. 159
Series
Avhandlingsserie inom området Människan i välfärdssamhället, ISSN 2003-3699 ; 11
Keywords
Family members, quality of care, care place, care service, satisfaction, information, end-of-life communication, palliative care, end-of-life care, VOICES questionnaire, involvement in decision-making, respect and dignity, support
National Category
Nursing
Research subject
The Individual in the Welfare Society, Palliative Care
Identifiers
urn:nbn:se:esh:diva-8782 (URN)978-91-985806-0-0 (ISBN)
Public defence
2021-05-28, Aulan, Campus Ersta, 09:30
Opponent
Supervisors
Available from: 2021-05-06 Created: 2021-04-28 Last updated: 2023-09-22Bibliographically approved

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O'Sullivan, AnnaAlvariza, AnetteÖhlén, JoakimLarsdotter ex. Håkanson, Cecilia

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