title: Experiences of parents of children surviving brain tumour: a happy ending and a rough beginning.
abstract: Despite a large number of studies reporting distress in parents after successfully completed cancer treatment of a child, few have explored the influence of current matters. The objective of this study was to explore parents' perceptions of post-treatment influence of childhood brain tumour. Semi-structured individual interviews were performed with the parents of seven children who had completed treatment for various types of brain tumour. Through inductive thematic analysis five key themes were derived, including 16 sub-themes. The key themes relate to: (1) survivor needs related to training and everyday life activities, where parents invested a large amount of time and commitment; (2) the everyday family life was restricted: family life in focus; (3) parenting role and routines had become more demanding; (4) for the parent as an individual daily routine as well as the view of life had changed; and (5) parental concerns and worries regarding the survivor's current and future well-being were amplified. Findings of the study suggest that the parents in the study struggle with the consequences of tangible strain, as well as existential challenges. Follow-up support should include updated information about the child's present state, and how it can be improved, as well as coaching when assisting and supporting the child.
authors.affiliation: Department of Woman and Child Health, Childhood Cancer Research Unit, Karolinska Institutet, and Astrid Lindgren Children's Hospital, Stockholm, Sweden. Annika.Lindahl@ki.se
authors.forename: A Lindahl
authors.initials: AL
authors.lastname: Norberg
authors.forename: S
authors.initials: S
authors.lastname: Steneby
mesh_terms: D000203:Activities of Daily Living; D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D001932:Brain Neoplasms / Q000534:rehabilitation; D002648:Child; D005190:Family / Q000523:psychology; D005260:Female; D006801:Humans; D008297:Male; D010287:Parent-Child Relations; D016487:Parenting / Q000523:psychology*; D010290:Parents / Q000523:psychology*; D013315:Stress, Psychological; D011795:Surveys and Questionnaires; D017741:Survivors; D013548:Sweden