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Bereaved family members’ VOICES of support and 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
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 [en]
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: urn:nbn:se:esh:diva-8782Libris ID: xbwfxsnfvf15f1vmISBN: 978-91-985806-0-0 (tryckt)OAI: oai:DiVA.org:esh-8782DiVA, id: diva2:1547812
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
Delarbeten
1. Adaptation and validation of the VOICES (SF) questionnaire - for evaluation of end-of-life care in Sweden.
Öppna denna publikation i ny flik eller fönster >>Adaptation and validation of the VOICES (SF) questionnaire - for evaluation of end-of-life care in Sweden.
2018 (Engelska)Ingår i: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 32, nr 3, s. 1254-1260Artikel i tidskrift (Refereegranskat) Published
Abstract [en]

OBJECTIVES: Instruments for evaluating end-of-life care by voicing experiences of family members have previously been lacking in Sweden. The objective of this study was therefore to adapt and validate the VOICES (SF) questionnaire to evaluate quality of end-of-life care in Sweden. The VOICES (SF) [Views of Informal Carers - Evaluation of Services (Short form)] is a questionnaire about bereaved relatives' experiences of care in the last three months of life of a deceased family member.

METHODS: This study was performed based on translation and back translation, cross-cultural adaptation and content validation through cognitive interviewing and feedback from professional experts. For the cognitive interviews, a purposeful sample of 35 bereaved family members was recruited from home care, hospital wards and nursing homes. The participants were 13 men and 22 women (age ranged between 20 and 90+, mean age 66), who were relatives of persons who died from life-limiting conditions. The bereaved family members' and the professional experts' concerns were summarised and analysed based on clarity, understanding, relevance, sensitivity and alternative response/wording.

RESULTS: The main concerns emerging from the content validation related to the understanding and clarity of some of the questionnaire items', and a few concerns regarding the relevance of different response alternatives or items. Only two of the family members found it emotional to complete the questionnaire, and they still deemed completing it to be important and manageable.

SIGNIFICANCE OF RESULTS: The VOICES (SF) can be considered as feasible in the Swedish context, provided that cultural adaptation has been achieved, that is translation alone is not enough. The Swedish version will be available for healthcare professionals to use for quality monitoring of the care provided over the last three months in life, and for research, it enables national and cross-national comparisons between different healthcare places and organisations.

Nyckelord
Swedish, Bereaved family members, Cultural adaption, End-of-life care quality, Palliative, Validation
Nationell ämneskategori
Omvårdnad
Identifikatorer
urn:nbn:se:esh:diva-6639 (URN)10.1111/scs.12542 (DOI)29148073 (PubMedID)
Tillgänglig från: 2018-02-15 Skapad: 2018-02-15 Senast uppdaterad: 2021-12-17Bibliografiskt granskad
2. Bereaved Family Members' Satisfaction with Care during the Last Three Months of Life for People with Advanced Illness.
Öppna denna publikation i ny flik eller fönster >>Bereaved Family Members' Satisfaction with Care during the Last Three Months of Life for People with Advanced Illness.
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.

Nyckelord
Sweden, End-of-life care, Palliative care, Proxy measurement, Quality of health care
Nationell ämneskategori
Omvårdnad
Identifikatorer
urn:nbn:se:esh:diva-7105 (URN)10.3390/healthcare6040130 (DOI)30404147 (PubMedID)
Tillgänglig från: 2018-11-13 Skapad: 2018-11-13 Senast uppdaterad: 2021-10-28Bibliografiskt granskad
3. The influence of care place and diagnosis on care communication at the end of life: bereaved family members' perspective
Öppna denna publikation i ny flik eller fönster >>The influence of care place and diagnosis on care communication at the end of life: bereaved family members' perspective
2021 (Engelska)Ingår i: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 19, nr 6, s. 664-671Artikel i tidskrift (Refereegranskat) 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.

Nyckelord
Communication, Diagnosis, End of life, Family members, Place of care
Nationell ämneskategori
Omvårdnad
Identifikatorer
urn:nbn:se:esh:diva-8727 (URN)10.1017/S147895152100016X (DOI)000737142900005 ()33781369 (PubMedID)
Anmärkning

Forskningsfinansiärer:

- Ersta Sköndal Bräcke högskola

- Sven och Dagmar Saléns stiftelser

- Stiftelsen Ulrica Cronés fond

Tillgänglig från: 2021-04-06 Skapad: 2021-04-06 Senast uppdaterad: 2022-01-13Bibliografiskt granskad
4. Support Received by Family Members Before, at and After an Ill Person’s Death
Öppna denna publikation i ny flik eller fönster >>Support Received by Family Members Before, at and After an Ill Person’s Death
2021 (Engelska)Ingår i: BMC Palliative Care, E-ISSN 1472-684X, Vol. 20, artikel-id 92Artikel i tidskrift (Refereegranskat) Published
Nyckelord
Communication End-of-life care, Family members, Information, Palliative care, Support
Nationell ämneskategori
Omvårdnad
Identifikatorer
urn:nbn:se:esh:diva-8781 (URN)10.1186/s12904-021-00800-8 (DOI)000668605600004 ()34167530 (PubMedID)
Anmärkning

Publication status in dissertation: Submitted

Tillgänglig från: 2021-04-28 Skapad: 2021-04-28 Senast uppdaterad: 2024-01-17Bibliografiskt granskad

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