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O'Sullivan, A. (2023). Undocumented migrants’ access to healthcare in Sweden, and the impact of Act 2013:407. Nursing Ethics
Open this publication in new window or tab >>Undocumented migrants’ access to healthcare in Sweden, and the impact of Act 2013:407
2023 (English)In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989Article in journal (Refereed) Epub ahead of print
Abstract [en]

Background Research shows that undocumented migrants have difficulties in accessing healthcare. Act 2013:407 came into force in 2013 and entitled undocumented migrants to healthcare that cannot be deferred. To date, studies about undocumented migrants’ access to care in Sweden and the impact of Act 2013:407 are sparse. Hence, the aim of this study was to describe professionals’ experiences of access to healthcare for undocumented migrants in Sweden and the impact of Act 2013:407.

Methods A qualitative design with semi-structured interviews was employed. Nine interviews were carried out in 2015 with nurses at two NGO healthcare centres for undocumented migrants – and an additional seven interviews in 2022 with staff at an NGO healthcare centre for undocumented migrants and personnel at a regional health and medical care administration. Interpretive description was used for the analyses.

Ethical considerations Permission to carry out the study was obtained from managers at the participating NGOs and the regional health and medical care administration. Participants received verbal and written information about the study, and informed consent was obtained from all participants.

Findings Six categories emerged from the analysis: Changes since the Act was introduced, General problems with healthcare access, Care for undocumented migrants – politics and social economy, Lack of knowledge, ‘Healthcare that cannot be deferred’ and Being an undocumented migrant.

Conclusion Undocumented migrants’ social needs are as great as their needs for healthcare. Healthcare staff are burdened with healthcare cost considerations which affect their judgement of care provision and prioritization. Healthcare staff attitudes towards undocumented migrants affect their access to healthcare. Undocumented migrants in need of healthcare are especially vulnerable due to their legal status, being ill and the fear of being reported and deported. To assure undocumented migrants’ access to healthcare and maintain healthcare ethics, the only possible solution is to provide healthcare based on needs.

Keywords
Access, Healthcare, Migrant, Nursing ethics, Sweden, Undocumented migrant
National Category
Medical Ethics Health Care Service and Management, Health Policy and Services and Health Economy Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:esh:diva-10517 (URN)10.1177/09697330231215947 (DOI)
Available from: 2023-11-27 Created: 2023-11-27 Last updated: 2023-11-28Bibliographically approved
O'Sullivan, A. (2021). Bereaved family members’ VOICES of support and care during the last three months of life for people with advanced illness. (Doctoral dissertation). Stockholm: Ersta Sköndal Bräcke högskola
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
O'Sullivan, A., Alvariza, A., Öhlén, J. & Larsdotter, C. (2021). Support Received by Family Members Before, at and After an Ill Person’s Death. BMC Palliative Care, 20, Article ID 92.
Open this publication in new window or tab >>Support Received by Family Members Before, at and After an Ill Person’s Death
2021 (English)In: BMC Palliative Care, E-ISSN 1472-684X, Vol. 20, article id 92Article in journal (Refereed) Published
Keywords
Communication End-of-life care, Family members, Information, Palliative care, Support
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-8781 (URN)10.1186/s12904-021-00800-8 (DOI)000668605600004 ()34167530 (PubMedID)
Note

Publication status in dissertation: Submitted

Available from: 2021-04-28 Created: 2021-04-28 Last updated: 2024-01-17Bibliographically approved
O'Sullivan, A., Alvariza, A., Öhlén, J. & Larsdotter ex. Håkanson, C. (2021). The influence of care place and diagnosis on care communication at the end of life: bereaved family members' perspective. Palliative & Supportive Care, 19(6), 664-671
Open this publication in new window or tab >>The influence of care place and diagnosis on care communication at the end of life: bereaved family members' perspective
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.

Keywords
Communication, Diagnosis, End of life, Family members, Place of care
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-8727 (URN)10.1017/S147895152100016X (DOI)000737142900005 ()33781369 (PubMedID)
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
Andersen, R. & O'Sullivan, A. (2019). De som samhället inte vill se (1ed.). In: Gunilla Silfverberg (Ed.), Utsatthet och ansvar: Flickan med svavelstickorna i vår tid (pp. 80-92). Stockholm: Appell Förlag
Open this publication in new window or tab >>De som samhället inte vill se
2019 (Swedish)In: Utsatthet och ansvar: Flickan med svavelstickorna i vår tid / [ed] Gunilla Silfverberg, Stockholm: Appell Förlag , 2019, 1, p. 80-92Chapter in book (Other academic)
Place, publisher, year, edition, pages
Stockholm: Appell Förlag, 2019 Edition: 1
Keywords
Tvångsuppfostringsanstalten Viebäck, Viebäckshemmen
National Category
History of Ideas
Identifiers
urn:nbn:se:esh:diva-7725 (URN)9789198496055 (ISBN)
Available from: 2019-08-27 Created: 2019-08-27 Last updated: 2023-01-24Bibliographically approved
O'Sullivan, A., Öhlen, J., Alvariza, A. & Håkanson, C. (2018). Adaptation and validation of the VOICES (SF) questionnaire - for evaluation of end-of-life care in Sweden.. Scandinavian Journal of Caring Sciences, 32(3), 1254-1260
Open this publication in new window or tab >>Adaptation and validation of the VOICES (SF) questionnaire - for evaluation of end-of-life care in Sweden.
2018 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 32, no 3, p. 1254-1260Article in journal (Refereed) 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.

Keywords
Swedish, Bereaved family members, Cultural adaption, End-of-life care quality, Palliative, Validation
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-6639 (URN)10.1111/scs.12542 (DOI)29148073 (PubMedID)
Available from: 2018-02-15 Created: 2018-02-15 Last updated: 2021-12-17Bibliographically approved
O'Sullivan, A., Alvariza, A., Öhlen, J. & Håkanson, C. (2018). Bereaved Family Members' Satisfaction with Care during the Last Three Months of Life for People with Advanced Illness.. Healthcare (Basel, Switzerland), 6(4), Article ID E130.
Open this publication in new window or tab >>Bereaved Family Members' Satisfaction with Care during the Last Three Months of Life for People with Advanced Illness.
2018 (English)In: Healthcare (Basel, Switzerland), ISSN 2227-9032, Vol. 6, no 4, article id E130Article in journal (Refereed) 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.

Keywords
Sweden, End-of-life care, Palliative care, Proxy measurement, Quality of health care
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-7105 (URN)10.3390/healthcare6040130 (DOI)30404147 (PubMedID)
Available from: 2018-11-13 Created: 2018-11-13 Last updated: 2021-10-28Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0002-4136-7250

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