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Psychosocial needs of families with a child with cancer
Authors:Ljungman Gustaf  McGrath Patrick J  Cooper Elisabeth  Widger Kimberley  Ceccolini Jill  Fernandez Conrad V  Frager Gerri  Wilkins Krista
Affiliation:Department of Women's and Children's Health, Uppsala University, Unit of Pediatric Hematology and Oncology, University Children's Hospital, Uppsala, Sweden.
Abstract:PURPOSE: The aims of this study were to map the problems and needs of children with cancer and their families with regard to possible psychosocial interventions, and to do an acceptability study of different ways to provide support. METHODS: The authors performed a cross-sectional structured telephone interview with 56 parents of children with cancer and 13 adolescents from these families. On 0 to 10 analog scales, parents and adolescents rated the importance of different needs, how these needs had been met, the acceptability of different ways of providing supportive interventions, how often these ways had been used, and comfort using them. RESULTS: Parents' mean rating of importance of information needs was 9.42, peer social support 7.84, and self-management therapy 9.21. The ratings of how well these needs had been met were 8.05, 5.30, and 7.13, respectively. Both parents and adolescents ranked getting information written on paper highest, preferred to communicate in a face-to-face support group for peer social support, and preferred a therapist for self-management therapy. The comfort ratings for using different ways to provide the interventions were all high, as was access; 89% of families had computers in their homes, 76% had Internet access. CONCLUSIONS: The needs for information, peer social support, and self-management therapy are all high. There is still room to meet these needs better. Using paper-based, telephone, computer CD, or an interactive Web-based intervention package all seem to be acceptable and accessible ways to meet the needs and might reduce the risk of families developing psychosocial problems.
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