Meaningful outcomes of specialist leisure activities for children with complex disabilities: the views of parents, professionals and young people.
Bethan Collins, Nicole McGrath, Fiona Astill, Lisa Hurt, Sabine Maguire & Alison Kemp
December 2023
Leisure activities during childhood are vital to quality of life and wellbeing, however parents report poor quality of life and infrequent leisure participation for children with complex disabilities. Sparkle, a charity in South Wales, delivers specialist leisure activities aimed at providing children with disabilities with access to the same opportunities as any other child. We explored the impact of this provision on psychosocial domains of quality of life for children with complex disabilities. Multi-source qualitative case studies including interviews and observations were conducted with: four children/young people - aged 8-15 years with diagnoses including autism, Down’s syndrome and cerebral palsy - accessing Sparkle’s leisure activities; their parents/carers and leisure staff supporting them. Data were analysed using coding reliability thematic analysis. Three themes were generated: self-development, friendship and social interaction, and self and family wellbeing. An overarching theme of the need for a specialist provision enabled the other themes linked to positive outcomes for the children. We concluded that a specialist provision contributes to positive psychosocial outcomes linked to leisure participation for children with complex disabilities. Limitations, future research and implications for policy and practice are discussed.
https://doi.org/10.1101/2023.11.15.23298514
‘Whose quality of life is it anyway?’ – Evaluation of quality of life tools for children with complex needs accessing specialist leisure provision.
Fiona Astill, Bethan Collins, Nicole McGrath, Alison Kemp, List Hurt & Sabine Maguire
December 2023
Studies of quality of life (QoL) routinely exclude children with complex needs. These children struggle to access leisure activities, particularly those with severe communication needs or challenging behaviour. Sparkle provides specialised leisure services to children and young people (0-17 years) with complex needs in South Wales, UK. We aimed to evaluate previously validated tools to measure QoL with this population. Three tools were assessed over a 6-year period – PedsQL, KINDLR and QI-Disability. PedsQL (41) and KINDLR (10) were attempted by the children attending the clubs (5-17 years old), and QI-Disability by caregivers (96). The majority of child participants had a neurodevelopmental diagnosis, a proportion of whom were non-verbal. Neither KINDLR nor PedsQL were appropriate for the population, with children unable to understand the questions and answers. The QI-Disability scores showed a statistically significant improvement in parents’ estimate of their child’s positive emotions, but results were severely limited by drop off. Existing validated QoL tools cannot be meaningfully used by children with complex needs. While the caregiver tool showed some benefit of specialist leisure provision, it is recognised that caregivers may perceive a child’s QoL differently to the child themselves, and caregivers clearly found repeat measurements onerous.
https://doi.org/10.1101/2023.11.15.23298564
The effect of leisure activities on quality-of-life scores for children with complex needs: A service evaluation in Wales, UK
Nicole McGrath, Fiona Astill, Bethan Collins, Sabine Maguire, Alison Kemp & Lisa Hurt
December 2023
Purpose: Recent guidance has resulted in an increased level of interest in the wellbeing of children and young people, including those with complex needs. Evaluation of quality of life in this population is notoriously difficult, but has become increasingly vital when assessing the value of a service.
Methods: A previously validated tool, Quality of life Inventory-Disability (QI-Disability), was used in conjunction with parental reports on quality-of-life measures for children and young people before and after 6 and 12 months of attending specialist leisure activities provided by a charity (Sparkle) at children’s centres in South Wales.
Results: QI-Disability scores improved overall after 6 and 12 months of attending Sparkle club activities. However, the only statistically significant improvement was in the QI-Disability positive emotions domain. Parental reports also confirmed that children and young people were making progress towards their personal goals.
Conclusion: Collecting evaluation data within real-world services is challenging but essential. This paper uses quality-of-life measures to demonstrate how leisure activities provided by Sparkle improve scores for children with disabilities, including evidence of the perceived value for children, young people and parents.
https://doi.org/10.1101/2023.12.22.23300435
Care coordination for children with a disability or developmental difficulty: Empowers families and reduces the burden on staff supporting them
Sarah Myers, Bethan Collins & Sabine Maguire
15th August 2023
"Background - Almost half of all children and young people with a disability or developmental difficulty (DDD) have complex disability and are likely to require multidisciplinary care. Care coordination (CC) aims to provide a single point of contact and a coordinated service, thereby improving care experiences, meeting unmet needs and empowering families. The impact of CC for children with DDD was evaluated. Method - Between May and August 2020, an in-depth evaluation of CC in Gwent, South Wales was conducted. Of 284 families who accessed CC, 38 were approached, as well as 177 health and social care professionals based at Serennu, Nevill Hall and Caerphilly Children's Centres. Nine families and 14 professionals completed semi-structured interviews. Interview transcripts were analysed using thematic analysis. Results - This evaluation found perceived improvements in families' abilities to navigate, organize and understand care and increased parental engagement. Professionals observed fewer missed appointments, and both professionals and families described CC as a source of holistic support, including practical advice regarding housing, finances and emotional support. Professionals commented on CC easing pressure on their service. Potential limitations included restricted staff capacity and the role not being defined clearly for families and professionals. Conclusions - At a time of increased stress for families of children with DDD, and scarce resources to support them, care coordinators play a vital role in assisting families to engage with health services, while feeling supported and empowered. CC reduces the burden on professionals, while enhancing relationships with families.
https://doi.org/10.1111/cch.13158
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What can a Family Liaison Service offer families of children with disabilities and/or developmental difficulties?
Bethan Collins, Nicole McGrath & Sabine Maguire
22nd June 2023
"Purpose - Families of children with disabilities experience challenges, which Sparkle's Family Liaison Service (FLS) aims to alleviate. The purpose of this study was to evaluate the impact of the service. Design/methodology/approach - Qualitative interviews with ten families who had accessed the FLS and 14 professionals working with children with disabilities were conducted in 2020. Interview transcripts were analysed using inductive and deductive thematic analysis. Findings - Families valued an accessible service and a neutral individual who could empathise with them. Professionals highlighted the FLS relieving pressure they felt to provide informal support for families they work with, resulting in considerable time saving. Originality/value - To the best of the authors knowledge, this is the first evaluation of the novel FLS meeting the unmet needs of families of children with disabilities. The service equips and empowers caregivers to enhance their own lives and the lives of their children and family.”
https://doi.org/10.1108/TLDR-11-2022-0024
Improving Social-Emotional and Life Skills of Young People with Complex Additional Needs Through 'Outward Bound' Residential Trips
Sarah Myers, Fiona Elliot, Sabine Maguire & Michelle Barber
19th July 2021
"Among the estimated 800,000 children in the United Kingdom with disability, challenges include lack of access to leisure activities, opportunities for independent development and social contact. Short breaks and residential trips (RTs) provide positive experiences, and help improve mental and physical wellbeing. However, evaluations involving young people (YP) with disabilities are lacking. We aimed to understand the value and outcomes of a RT, from the perspective of YP, their parents, and staff. YP with disabilities (N = 35) aged 12–17 years, attended outdoor activity based RTs in 2019 provided by Sparkle (South Wales) Ltd. A mixed methods approach was used for data collection; YP attended focus groups (N = 13), and parents (N = 21) and staff (N = 5) completed feedback questionnaires. The data was double coded and analysed thematically. In addition to enjoyment, interview data suggests the participants felt that the YP’s emotional and social wellbeing improved. There were reported improvements in confidence, increased incidences of social communication behaviour, resilience and self-care. RTs have the potential to make a significant impact on YP and their families, and their role is an important consideration in the context of local authority funding cuts, and barriers to accessing short breaks."
https://www.tandfonline.com/doi/full/10.1080/1034912X.2021.1944992
"They just get it" - an exploration of father's experiences and perceptions of a support group for men caring for children with disabilities and/or developmental delay
Molly Batchelor, Sabine Maguire & Julia Shearn
12th October 2020
"Background - Support groups available to parents/carers of children with a disability or developmental delay (DDD) are predominately attended by women. Limited data exists reporting experiences of the few male-only support groups. This paper examines experiences of fathers of children with DDD attending a male-only support group from South Wales. Method - All fifteen members from a support group for fathers/male carers of children with DDD were invited to take part in qualitative interviews and seven participated. The data were analysed following Braun and Clarke's (Qualitative research in psychology, 2006, 3:77) thematic framework. Results - Within the group, fathers felt understood by similarly situated men, and a sense of connectivity and belonging. Fathers perceived exclusion elsewhere, including mixed-gender groups. Fathers felt permission to talk in a way consistent with their male identities, and valued receiving, and giving, support. Conclusions - Mixed-gender support groups may not meet the needs of fathers, and there are potential benefits in providing male-only groups."
https://onlinelibrary.wiley.com/doi/10.1111/jar.12804
‘Counselling in complexity’: The use of social constructionist ideas within a community-based approach to working with families affected by disability
Emma Catherine Johnston
June 2015
“This paper describes the development of a service delivery model for families within a disability context. The design approach makes use of action research methodology (Carson & Sumara, 1997) and is a collaborative exercise and a work in progress.”
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