The core features and outcomes of a specialised camp programme for children with life-limiting conditions and their families: A qualitative multi-perspective approach
Family camp programme; paediatric life-limiting illness; qualitative
Previous research has reported that the families of children with enduring and life-limiting health conditions are at risk of negative psychosocial effects. Adjunct to medical interventions, specialist camp programmes have been developed to promote familial adjustment. However, limited research has been carried out in this area. The aim of this study was to describe the core features and outcomes of a specialised camp programme for children with life-limiting conditions (LLC) and their family. Semi-structured interviews were conducted with four professionals, three volunteers involved in facilitating the programme and two mothers representing families that attended the programme. Multiple perspectives were sought to gain a detailed understanding of the programme and outcomes. Data were analysed through an inductive thematic approach. There was considerable overlap among participant groups on the core features and outcomes of the programme. Thematically, core features are described in terms of familial togetherness, peer interaction, safety and positive experiences. Noted outcomes include lasting memories, continued peer relations for parents and siblings and enhancement of relationships between family members and professionals. Findings suggest that specialised camp programmes may provide families of children with LLC with positive experiences that support adjustment, although further research is required.
Mulligan S; Guerin S; McKiernan A; Brown A; Hartnett M; Gray D; Kiernan G
Journal of Child Health Care
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/1367493519875593" target="_blank" rel="noreferrer noopener">10.1177/1367493519875593</a>
Parents' experiences of services for their child with a life-limiting neurodevelopmental disability
article; child; female; human; major clinical study; male; staff; funding; interview; nervous system malformation; quantitative analysis
This study explored parents' experiences of services for children with life-limiting neurodevelopmental disabilities (LLNDD) using mixed methods. The study included a quantitative survey (n = 63) and qualitative interviews (n = 12), with a focus on integrating the findings to identify higher-level insights. Results suggest parents' experiences are mixed, showing more negative than positive experiences. Access to services was described as problematic, with obstacles including funding and geographical inequities. Helpful aspects included staff attitudes and relationships and, to a lesser extent, coordinated care. Unhelpful aspects included inconsistencies in the provision of services. The findings suggest some implications for service provision, including the need for a more family-centered approach. Copyright © 2019, © 2019 Taylor & Francis Group, LLC.
Kiernan G; Courtney E; Ryan K; McQuillan R; Guerin S
Children's Health Care.
2019
<a href="http://doi.org/10.1080/02739615.2019.1605608" target="_blank" rel="noreferrer noopener">10.1080/02739615.2019.1605608</a>