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A Nationwide Study of Young Adults' Perspectives on Participation in Bereavement Research
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, Center for Clinical Research Dalarna. Dalarna Univ, Sch Educ Hlth & Social Studies, S-79188 Falun, Sweden;Ersta Skondal Bracke Univ Coll, Dept Hlth Care Sci, Palliat Res Ctr, Stockholm, Sweden.
Ersta Skondal Bracke Univ Coll, Dept Hlth Care Sci, Palliat Res Ctr, Stockholm, Sweden;Karolinska Inst, Dept Womens & Childrens Hlth, Paediat Oncol & Haematol, Stockholm, Sweden;Karolinska Univ Hosp, Astrid Lindgren Childrens Hosp, Childhood Canc Res Unit, Stockholm, Sweden.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Psychiatry, University Hospital. Ersta Skondal Bracke Univ Coll, Dept Hlth Care Sci, Palliat Res Ctr, Stockholm, Sweden.ORCID iD: 0000-0002-5523-8126
Karolinska Inst, Dept Oncol Pathol Clin Canc Epidemiol, Stockholm, Sweden;Karolinska Inst, Dept Learning Informat Management & Eth, Learning Healthcare Contexts, Stockholm, Sweden.
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2019 (English)In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 22, no 10, p. 1271-1273Article in journal (Refereed) Published
Abstract [en]

Background: Young adults represent a minority in research; they are often considered too young or too old for participation. There is sparse information, especially in bereavement research, regarding how this age group perceives research participation and what they consider beneficial or harmful.

Aim: To explore how parentally bereaved and nonbereaved young adults perceive research participation.

Design: Qualitative analysis of free-text comments collected in a Swedish nation-wide survey.

Setting/Participants: Parentally cancer-bereaved and nonbereaved young adults between 18 and 25 years old living in Sweden.

Results: Five categories were identified from the free-text comments, three among the cancer-bereaved: (1) therapeutic to remember the deceased, (2) valuable to help others and improve care, and (3) short-term distressful-long-term beneficial, and two among the nonbereaved: (1) increased reflection and awareness about life, and (2) an opportunity to help others.

Conclusions: It is important to invite young adults to participate in bereavement research. The results suggest that potential harm is minimal and that participating in bereavement research can have a beneficial effect on young adults.

Place, publisher, year, edition, pages
2019. Vol. 22, no 10, p. 1271-1273
Keywords [en]
bereavement research, comparison group, young adult
National Category
Other Medical Sciences not elsewhere specified
Identifiers
URN: urn:nbn:se:uu:diva-381127DOI: 10.1089/jpm.2018.0630ISI: 000461788800001PubMedID: 30892140OAI: oai:DiVA.org:uu-381127DiVA, id: diva2:1302300
Available from: 2019-04-04 Created: 2019-04-04 Last updated: 2019-12-18Bibliographically approved

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