Closely after I finished nursing school I started my doctoral studies in palliative care with focus on psychosocial oncology. I studied self-reported outcomes such as symptom experiences and the experiences of the quality of care from the perspective of the patient and the relative. Later on I got involved as a post doc in projects in the pediatric palliative care. Since then I have mainly focused on cancer-bereaved siblings and their experiences of losing a brother or sister. I am also involved in research about the rare and severe disease spinal muscle atrophy in which we examine the parents’ and the ill child’s experiences of illness and care. The overall goal with my research is to identify modifiable and avoidable factors in order to decrease suffering and increase quality of life for terminally ill children and their families.
(1) Karolinska Institutet, Dept of Women's and Children's Health, Stockholm, Sweden, (2) Dalarna University, Falun, Sweden, (3) Uppsala University, Uppsala, Sweden, (4) Mälardalen University,
Västerås, Sweden, 5Ersta Sköndal University College, Stockholm, Sweden
Background: Siblings of children with cancer often feel invisible not only within the family so also in health care. Guidelines for siblings of children with cancer emphasize the importance of informing and involving them from diagnosis and onward. In order to improve the situation and develop suitable interventions for siblings of childhood cancer patients, the aim of this study was to examine siblings' advice to health care professionals working with children with cancer and their families.
Material and methods: The study was based on bereaved sibling´s answers from a nationwide survey in Sweden during 2009. Of 240 eligible siblings, 174 participated in the survey (73% response-rate) whereof 110 (66 women and 44 men) answered the open-ended question about which advice they would like to give to health care professionals. To better understand the siblings' answers a focus group discussion was carried out in May 2014 as a complement to the open-ended question. Data have been analyzed with content analysis.
Results: A majority of the advices were associated with the siblings needs of being included in the health care to get own support or because they wanted to be included in the brother or sister's care, i.e. information needs or because they wanted to be involved more practically. Many statements were associated with a lack of communication between staff and siblings, which was closely linked to a non-established relationship between siblings and staff. The siblings need of medical information and own support continued years after the brother's or sister's death.
Conclusion: To better support and include the siblings in the care of the brother/sister, suitable interventions need to be developed throughout the cancer trajectory, but also years after the brother's or sister's death