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Cancer-bereaved siblings' positive and negative memories and experiences of illness and death: A nationwide follow-up

Published online by Cambridge University Press:  23 June 2017

Mary-Elizabeth Bradley Eilertsen ,
Malin Lövgren ,
Alexandra Eilegård Wallin  and
Ulrika Kreicbergs
Mary-Elizabeth Bradley Eilertsen*
Affiliation:
Department of Nursing, Center for Health Promotion Research, Faculty of Health and Social Science, Norwegian University of Technology and Science, Trondheim, Norway Division of Women's and Child's Health, Childhood Cancer Research Unit, Karolinska Institutet, Stockholm, Sweden
Malin Lövgren
Affiliation:
Division of Women's and Child's Health, Childhood Cancer Research Unit, Karolinska Institutet, Stockholm, Sweden The Department of Caring Sciences, Palliative Research Centre, Ersta Sköndal University College, Stockholm, Sweden
Alexandra Eilegård Wallin
Affiliation:
School of Education, Health and Society, Dalarna University, Falun, Sweden
Ulrika Kreicbergs
Affiliation:
Division of Women's and Child's Health, Childhood Cancer Research Unit, Karolinska Institutet, Stockholm, Sweden The Department of Caring Sciences, Palliative Research Centre, Ersta Sköndal University College, Stockholm, Sweden
*
Address correspondence and reprint requests to: Mary-Elizabeth Bradley Eilertsen, Faculty of Medicine and Health Sciences, Department of Public Health and Nursing, Center for Health Promotion Research, Norwegian University of Technology and Science, 7491 Trondheim, Norway. E-mail: [email protected].
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Abstract

Objective:

Our aim was to explore bereaved siblings' positive and negative memories and experiences of their brother's or sister's illness and death.

Method:

In our nationwide Swedish study, 174 of 240 (73%) bereaved siblings participated, and 70% responded to two open-ended statements, which focused on siblings' positive and negative memories and experiences of illness and death. The data were analyzed using systematic text condensation.

Results:

The bereaved siblings' responses were categorized into four different themes: (1) endurance versus vulnerability, (2) family cohesion versus family conflicts, (3) growth versus stagnation, and (4) professional support versus lack of professional support. The first theme expressed endurance as the influence that the ill siblings' strong willpower, good mood, and stamina in their difficult situation had on healthy siblings, whereas vulnerability was expressed as the feeling of emptiness and loneliness involved with having an ill and dying sibling. In the second theme, family cohesion was expressed as the bonds being strengthened between family members, whereas family conflicts often led siblings to feel invisible and unacknowledged. In the third theme, most siblings expressed the feeling that they grew as individuals in the process of their brother's or sister's illness and death, whereas others experienced stagnation because of the physical and mental distress they bore throughout this time, often feeling forgotten. In the last theme—professional support—most siblings perceived physicians and staff at the hospital as being warm, kind, and honest, while some siblings had negative experiences.

Significance of results:

The study shows that bereaved siblings can have positive memories and experiences. The significance of the positive buffering effect on bereaved siblings' own endurance, personal growth, family cohesion, and social support should be noted. This knowledge can be valuable in showing healthcare professionals the importance of supporting the siblings of children with cancer throughout the cancer trajectory and afterwards into bereavement.

Keywords

SiblingsCancerBereavementPediatric palliative carePsychosocial issues
Type
Original Article
Information
Palliative & Supportive Care , Volume 16 , Special Issue 4: Topics in Bereavement , August 2018 , pp. 406 - 413
Copyright
Copyright © Cambridge University Press 2017 

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