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Bereaved Family Members' Satisfaction with Care during the Last Three Months of Life for People with Advanced Illness.
Ersta Sköndal Bräcke högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC.ORCID-id: 0000-0002-4136-7250
Ersta Sköndal Bräcke högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Capio Palliativ vård Dalen.ORCID-id: 0000-0003-2711-0245
Göteborgs universitet.
Ersta Sköndal Bräcke högskola, Institutionen för vårdvetenskap, Palliativt forskningscentrum, PFC. Sophiahemmet högskola.ORCID-id: 0000-0003-3660-6306
2018 (Engelska)Ingår i: Healthcare (Basel, Switzerland), ISSN 2227-9032, Vol. 6, nr 4, artikel-id E130Artikel i tidskrift (Refereegranskat) Published
Abstract [en]

BACKGROUND: Studies evaluating the end-of-life care for longer periods of illness trajectories and in several care places are currently lacking. This study explored bereaved family members' satisfaction with care during the last three months of life for people with advanced illness, and associations between satisfaction with care and characteristics of the deceased individuals and their family members.

METHODS: A cross-sectional survey design was used. The sample was 485 family members of individuals who died at four different hospitals in Sweden.

RESULTS: Of the participants, 78.7% rated the overall care as high. For hospice care, 87.1% reported being satisfied, 87% with the hospital care, 72.3% with district/county nurses, 65.4% with nursing homes, 62.1% with specialized home care, and 59.6% with general practitioners (GPs). Family members of deceased persons with cancer were more likely to have a higher satisfaction with the care. A lower satisfaction was more likely if the deceased person had a higher educational attainment and a length of illness before death of one year or longer.

CONCLUSION: The type of care, diagnoses, length of illness, educational attainment, and the relationship between the deceased person and the family member influences the satisfaction with care.

Ort, förlag, år, upplaga, sidor
2018. Vol. 6, nr 4, artikel-id E130
Nyckelord [en]
Sweden, End-of-life care, Palliative care, Proxy measurement, Quality of health care
Nationell ämneskategori
Omvårdnad
Identifikatorer
URN: urn:nbn:se:esh:diva-7105DOI: 10.3390/healthcare6040130PubMedID: 30404147OAI: oai:DiVA.org:esh-7105DiVA, id: diva2:1262903
Tillgänglig från: 2018-11-13 Skapad: 2018-11-13 Senast uppdaterad: 2021-10-28Bibliografiskt granskad
Ingår i avhandling
1. Bereaved family members’ VOICES of support and care during the last three months of life for people with advanced illness
Öppna denna publikation i ny flik eller fönster >>Bereaved family members’ VOICES of support and care during the last three months of life for people with advanced illness
2021 (Engelska)Doktorsavhandling, sammanläggning (Övrigt vetenskapligt)
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.

Ort, förlag, år, upplaga, sidor
Stockholm: Ersta Sköndal Bräcke högskola, 2021. s. 159
Serie
Avhandlingsserie inom området Människan i välfärdssamhället, ISSN 2003-3699 ; 11
Nyckelord
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
Nationell ämneskategori
Omvårdnad
Forskningsämne
Människan i välfärdssamhället, Palliativ vård
Identifikatorer
urn:nbn:se:esh:diva-8782 (URN)978-91-985806-0-0 (ISBN)
Disputation
2021-05-28, Aulan, Campus Ersta, 09:30
Opponent
Handledare
Tillgänglig från: 2021-05-06 Skapad: 2021-04-28 Senast uppdaterad: 2023-09-22Bibliografiskt granskad

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O'Sullivan, AnnaAlvariza, AnetteHåkanson, Cecilia

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