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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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References

REFERENCES

Alderfer, M.A., Long, K.A., Lown, E.A., et al. (2010). Psychosocial adjustment of siblings of children with cancer: A systematic review. Psycho-Oncology, 19(8), 789–805.Google Scholar
Branje, S.J., van Lieshout, C.F., van Aken, M.A., et al. (2004). Perceived support in sibling relationships and adolescent adjustment. Journal of Child Psychology and Psychiatry, 45(8), 1385–1396.Google Scholar
Bringager, H.M. & Saeter, R. (2014). Barn Med Kreft: En Medisinsk og Sykepleiefaglig Utfordring (Children with Cancer: A Medical and Nursing Challenge) [in Norwegian]. Oslo: Gyldendal Akademisk.Google Scholar
Charlton, R. (2000). Research: Is an “ideal” questionnaire possible? International Journal of Clinical Practice, 54(6), 356–359.Google Scholar
Clemente, I. (2007). Clinicians' routine use of non-disclosure: Prioritizing “protection” over the information needs of adolescents with cancer. The Canadian Journal of Nursing Research, 39(4), 18–34.Google Scholar
Eilegård, A., Steineck, G., Nyberg, T., et al. (2013 a). Bereaved siblings' perception of participating in research: A nationwide study. Psycho-Oncology, 22(2), 411–416.Google Scholar
Eilegård, A., Steineck, G., Nyberg, T., et al. (2013 b). Psychological health in siblings who lost a brother or sister to cancer 2 to 9 years earlier. Psycho-Oncology, 22(3), 683–691.Google Scholar
Eilertsen, M.E., Eilegård, A., Steineck, G., et al. (2013). Impact of social support on bereaved siblings' anxiety: A nationwide follow-up. Journal of Pediatric Oncology Nursing, 30(6), 301–310.Google Scholar
Eilertsen, M.E., Hjemdal, O., Le, T.T., et al. (2015). Resilience factors play an important role in the mental health of parents when children survive acute lymphoblastic leukaemia. Acta Pædiatrica, 105(1), e30–e34.Google Scholar
Gibson, F. & Soanes, L. (2001). Long-term follow-up following childhood cancer: Maximizing the contribution from nursing. European Journal of Cancer. 37(15), 1859–1866; discussion 1866–1868.Google Scholar
Franko, D.L., Thompson, D., Bauserman, R., et al. (2008). What's love got to do with it? Family cohesion and healthy eating behaviors in adolescent girls. The International Journal of Eating Disorders, 41(4), 360–367.Google Scholar
Greeff, A., Vansteenwegen, A. & Herbiest, T. (2011), indicators of family resilience after the death of a child. Omega, 63(4), 343–358.Google Scholar
Grenklo, T.B., Kreicbergs, U.C., Valdimarsdottir, U.A., et al. (2013). Communication and trust in the care provided to a dying parent: A nationwide study of cancer-bereaved youths. Journal of Clinical Oncology, 31(23), 2886–2894.Google Scholar
Hamama, R., Ronen, T. & Feigin, R. (2000). Self-control, anxiety, and loneliness in siblings of children with cancer. Social Work in Health Care, 31(1), 63–83.Google Scholar
Havermans, T. & Eiser, C. (1994). Siblings of a child with cancer. Child Care, Health, and Development, 20(5), 309–322.Google Scholar
Hjemdal, O., Aune, T., Reinfjell, T., et al. (2007). Resilience as a predictor of depressive symptoms: A correlational study with young adolescents. Clinical Child Psychology and Psychiatry, 12(1), 91–104.Google Scholar
Horwitz, W.A. & Kazak, A.E. (1990). Family adaptation to childhood cancer: Sibling and family systems variables. Journal of Clinical Child Psychology, 19(3), 221–227.Google Scholar
Houtzager, B.A., Grootenhuis, M.A. & Last, B.F. (2001). Supportive groups for siblings of pediatric oncology patients: Impact on anxiety. Psycho-Oncology, 10(4), 315–324.Google Scholar
Knapp, A. & Contro, N. (2009). Family support services in pediatric palliative care. The American Journal of Hospice & Palliative Care, 26(6), 476–482.Google Scholar
Koocher, G.P. & O'Malley, J.E. (1981). The Damocles Syndrome. New York: McGraw-Hill.Google Scholar
Kreicbergs, U., Valdimarsdottir, U., Onelov, E., et al. (2004). Talking about death with children who have severe malignant disease. The New England Journal of Medicine, 351(12), 1175–1186.Google Scholar
Kupst, M.J., Natta, M.B., Richardson, C.C., et al. (1995). Family coping with pediatric leukemia: Ten years after treatment. Journal of Pediatric Psychology, 20(5), 601–617.Google Scholar
Last, B.R., Grootenhuis, M.A. & Eiser, C. (2005). International comparison of contributions to psychosocial research on survivors of childhood cancer: Past and future considerations. Journal of Pediatric Psychology, 30(1), 99–113.Google Scholar
Long, K.A., Marsland, A.L., Wright, A., et al. (2015). Creating a tenuous balance: Siblings' experience of a brother's or sister's childhood cancer diagnosis. Journal of Pediatric Oncology Nursing, 32(1), 21–31.Google Scholar
Lövgren, M., Bylund-Grenklo, T., Jalmsell, L., et al. (2016). Bereaved siblings' advice to health care professionals working with children with cancer and their families. Journal of Pediatric Oncology Nursing, 33(4), 297–305.Google Scholar
Malterud, K. (2012). Systematic text condensation: A strategy for qualitative analysis. Scandinavian Journal of Public Health, 40(8), 795–805.Google Scholar
Murray, J.S. (2002). A qualitative exploration of psychosocial support for siblings of children with cancer. Journal of Pediatric Nursing, 17(5), 327–337.Google Scholar
Nolbris, M. & Hellström, A.L. (2005). Siblings' needs and issues when a brother or sister dies of cancer. Journal of Pediatric Oncology Nursing, 22(4), 227–233.Google Scholar
Nolbris, M.J., Enskär, K. & Hellström, A.L. (2014). Grief related to the experience of being the sibling of a child with cancer. Cancer Nursing, 37(5), E1–E7.Google Scholar
Norberg, A.L., Lindblad, F. & Boman, K.K. (2005). Coping strategies in parents of children with cancer. Social Science & Medicine, 60(5), 965–975.Google Scholar
Parkes, C.M. (1996). Bereavement: Studies of Grief in Adult Life, 3rd ed. London: Routledge.Google Scholar
Pedro, I.C., Galvão, C.M., Rocha, S.M., et al. (2008). Social support and families of children with cancer: An integrative review. Revista Latino-Americana de Enfermagem, 16(3), 477–483.Google Scholar
Sahler, O.J., Roghmann, K.J., Mulhern, R.K., et al. (1997). Sibling Adaptation to Childhood Cancer Collaborative Study: The association of sibling adaptation with maternal well-being, physical health, and resource use. Journal of Developmental and Behavioral Pediatrics, 18(4), 233–243.Google Scholar
Sloper, P. (2000). Experience and support needs of children with cancer. Health and Social Care in the Community, 8(5), 298–306.Google Scholar
Sloper, P. & While, D. (1996). Risk factors in the adjustment of siblings of children with cancer. Journal of Child Psychiatry, 37(5), 597–607.Google Scholar
Spuij, M., van Londen-Huiberts, A. & Boelen, P.A. (2013). Cognitive behavioral therapy for prolonged grief in children: Feasiblility and multiple baseline study. Cognitive and Behavioral Practice, 20(3), 349–361.Google Scholar
Sveen, J., Eilegård, A., Steineck, G., et al. (2014). They still grieve: A nationwide follow-up of young adults 2–9 years after losing a sibling to cancer. Psycho-Oncology, 23(6), 658–664.Google Scholar
Thompson, A.L., Miller, K.S., Barrera, M., et al. (2011). A qualitative study of advice from bereaved parents and siblings. Journal of Social Work in End-of-Life & Palliative Care, 7(2–3), 153–172.Google Scholar
Wallin, A.E., Steineck, G., Nyberg, T., et al. (2016). Insufficient communication and anxiety in cancer-bereaved siblings: A nationwide long-term follow-up. Palliative & Supportive Care, 14(5), 488–494.Google Scholar
Warnick, A.L. (2015). Supporting youth grieving the dying or death of a sibling or parent: Considerations for parents, professionals, and communities. Current Opinion in Supportive and Palliative Care, 9(4), 58–63.Google Scholar
Woodgate, R.L. (2006). Siblings' experiences with childhood cancer: A different way of being in the family. Cancer Nursing, 29(5), 406–414Google Scholar
Zeltzer, L.K., Dolgin, M.J., Sahler, O.J., et al. (1996). Sibling Adaptation to Childhood Cancer Collaborative Study: Health outcomes of siblings with cancer. Medical and Pediatric Oncology, 27(2), 98–107Google Scholar