Robyn McNeil1, Mette Egsdal2, Sarah Drew3, Maria C McCarthy4, Susan M Sawyer5. 1. Murdoch Children's Research Institute, Melbourne, Australia; Royal Children's Hospital, Centre for Adolescent Health, Melbourne, Australia. Electronic address: robyn.mcneil@mcri.edu.au. 2. Murdoch Children's Research Institute, Melbourne, Australia; Royal Children's Hospital, Centre for Adolescent Health, Melbourne, Australia; Department of Public Health, The University of Copenhagen, Copenhagen, Denmark. 3. Murdoch Children's Research Institute, Melbourne, Australia; Department of Paediatrics, The University of Melbourne, Australia. 4. Murdoch Children's Research Institute, Melbourne, Australia; Children's Cancer Centre, Royal Children's Hospital, Melbourne, Australia. 5. Murdoch Children's Research Institute, Melbourne, Australia; Royal Children's Hospital, Centre for Adolescent Health, Melbourne, Australia; Department of Paediatrics, The University of Melbourne, Australia.
Abstract
PURPOSE: The aim of this study was to explore adolescent and young adult (AYA) experiences and preferences for social support early within the continuum of cancer treatment. METHODS: AYAs aged 15-25 years old at diagnosis were recruited from 6 clinical services that were purposively selected for providing specialist cancer care to AYAs across 3 Australian states and within paediatric and adult services. In-depth, semi-structured interviews were conducted by telephone 6-24 months from diagnosis. The narrative-based interviews included preferences for psychosocial support. Interviews were transcribed and thematic analysis was undertaken using grounded theory methodology. RESULTS: 60 AYAs were interviewed (mean age 20.52 [SD 2.97] years; 58% male; 72% adult settings). Analysis revealed that parents provided the foundation of emotional, informational and instrumental social support, even for older AYAs and those with partners and children. Informal emotional engagement with cancer peers was strongly appreciated during hospital treatment, while healthy peers provided welcome diversion at this time and during the transition towards their usual life. Nurses and allied health staff provided informational support to hospitalised AYAs and also provided a strong source of emotional support. Formal peer support programs were not endorsed by AYAs early in treatment but appreciated to be of greater interest to some following treatment completion. CONCLUSION: Social support was predominantly provided by family, peers and health professionals. The sources and types of support most welcomed by AYAs varied according to the intensity and phase of cancer treatment and where the young person was in their cancer trajectory.
PURPOSE: The aim of this study was to explore adolescent and young adult (AYA) experiences and preferences for social support early within the continuum of cancer treatment. METHODS: AYAs aged 15-25 years old at diagnosis were recruited from 6 clinical services that were purposively selected for providing specialist cancer care to AYAs across 3 Australian states and within paediatric and adult services. In-depth, semi-structured interviews were conducted by telephone 6-24 months from diagnosis. The narrative-based interviews included preferences for psychosocial support. Interviews were transcribed and thematic analysis was undertaken using grounded theory methodology. RESULTS: 60 AYAs were interviewed (mean age 20.52 [SD 2.97] years; 58% male; 72% adult settings). Analysis revealed that parents provided the foundation of emotional, informational and instrumental social support, even for older AYAs and those with partners and children. Informal emotional engagement with cancer peers was strongly appreciated during hospital treatment, while healthy peers provided welcome diversion at this time and during the transition towards their usual life. Nurses and allied health staff provided informational support to hospitalised AYAs and also provided a strong source of emotional support. Formal peer support programs were not endorsed by AYAs early in treatment but appreciated to be of greater interest to some following treatment completion. CONCLUSION: Social support was predominantly provided by family, peers and health professionals. The sources and types of support most welcomed by AYAs varied according to the intensity and phase of cancer treatment and where the young person was in their cancer trajectory.
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