Artikel
Emotional burdens of families affected by parental cancer – results of the Family-SCOUT project
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Veröffentlicht: | 30. September 2022 |
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Background and status of (inter)national research: Young families with minor children affected by parental cancer are at risk for increased psychological impairment like dysfunctionality in the family or psychological burden on the parents and children. There is still a gap in research regarding knowlegde about the everyday burdens of the families as a system.
Research question and objective: Which emotional burdens do families with minor children affected by parental cancer experience in everyday life?
Method or hypothesis: The study was part of the Familiy Scout project aiming to implement and evaluate a complex psychosocial intervention for these families by providing advice and care on an emotional, psycho-social and communicative level during and after the cancer experience. Semi-structured interviews were conducted with the healthy parent as a surrogate for the families about everyday burdens, resources, and communication patterns. All interviews were audio recorded, transcribed and analyzed using thematic analysis, specifically the technique of template analysis, which follows a structured process of analysis, but has a qualitative analytical flexibility to pick up the data and specifics of a study.
Results: A total of 16 healthy parents (eight women and eight men) in the control group were interviewed as a surrogate for their family. 11 interview partners were interviewed a second time after six to nine months, resulting in 27 interview transcripts being analyzed. With the help of the thematic analysis, nine themes could be generated, which reveal focal points in the emotional burdens of the families. These include finiteness of the disease, burdens in the partnership, grief, excessive demands, loneliness, effects of emotional burden on health, emotional burden from the service provider, emotional burden caused by the social environment and failure to address emotional distress within the family.
Discussion: Results should be interpreted in the light of several limitations. Social desirability bias may have affected our results. The interviews are representing the perceptions of the healthy parent as a surrogate. Therefore, views and experiences of the parent affected by cancer or the children were not included.
Practical implications: Emotional burdens should be specifically addressed and openly communicated by healthcare professionals when accompanying and taking care of the families.
Appeal for practice (science and/or care) in one sentence: A cancer diagnosis affects the whole family, further family-centered health services research is urgently needed to develop and evaluate psychosocial care concepts for all those affected.
Funding: Innovationsfonds/Versorgungsforschung