Play‐based groups for children with cerebral palsy and their parents: A qualitative interview study about the impact on mothers' well‐being

Abstract

Background: Cerebral palsy (CP) is the most common childhood physical disability in developed countries. Parents of children with CP experience difficulties that can result in reduced well-being. Health professionals supporting children with CP have been encouraged to focus on parental well-being as this forms part of the child's essential environment. There is a lack of evidence about interventions that holistically support the whole family by providing therapeutic input for the child and support for parents.This study aimed to explore parents' experiences of play-based groups for children with CP and their parents, with a focus on the groups' impact on parents' well-being.Methods: Parents of children with CP who had attended play-based groups in the year prior were recruited for this qualitative study. Semi-structured interviews were conducted, audio-recorded and transcribed verbatim. Participants' demographic characteristics were collected as contextual information. Data were analysed using an inductive thematic approach.Results: Ten mothers were interviewed. Overall, mothers had positive experiences of the groups and perceived them as an important influence on their well-being. Four themes described mothers' experiences of the groups and the subsequent impact on their well-being: (1) practical support, (2) connecting with others, (3) transitioning journeys and (4) different motivators, different experiences. Numerous factors influenced mothers' experiences of attending the groups and the subsequent impact on their well-being. This included mothers' individual experiences of having a child with CP.Conclusions: Interventions combining practical and social support for the whole family can have a positive impact on the well-being of mothers of children with CP. Care should be taken to provide individualised support for each family. There is no 'one-size-fits-all' approach, and a package of care can provide multiple services that meet the varying needs of mothers and their children with CP.

A co-adapted community-based participatory group programme for parents/carers of children with complex neurodisability (ENCOMPASS-2): A pilot and feasibility study protocol

“…At this stage, parents/ carers may be experiencing difficulties with their mental health (3) and feelings of denial, anxiety and worries about the future, as was seen in the ENCOMPASS 1 study. Parents/ carers with newly diagnosed children with CP often find comfort in a group setting, however it can at times be too emotionally difficult to see others within the group, particularly those with more severe physical difficulties (60). Facilitators of the groups will be experienced physiotherapists or occupational therapists, as well as other parents with lived experience, who will receive training about supporting parents/ carers' needs around the time of diagnosis.…”

‘There was nothing, just absolute darkness’: Understanding the needs of those caring for children and young people with complex neurodisability in a diverse UK context: A qualitative exploration in the ENCOMPASS study

“…Caregivers of CYP with complex neurodisability can experience adverse health outcomes, for example, mental health and physical difficulties, which may result in higher levels of stress, anxiety, depression, pain, chronic diseases, financial instability, and reduced quality of life (QoL) (Pousada et al, 2013). In order to address the complex needs of the caregivers, healthcare professionals (HCPs) supporting CYP with complex neurodisability are encouraged to work in partnership with caregivers (Hayles et al, 2015; Prest et al, 2022). Multi‐faceted family‐centred interventions can positively influence the wellbeing of caregivers by providing practical and social support for the child or young person and their caregivers (Prest et al, 2022).…”

“…In order to address the complex needs of the caregivers, healthcare professionals (HCPs) supporting CYP with complex neurodisability are encouraged to work in partnership with caregivers (Hayles et al, 2015; Prest et al, 2022). Multi‐faceted family‐centred interventions can positively influence the wellbeing of caregivers by providing practical and social support for the child or young person and their caregivers (Prest et al, 2022). Peer support is also recommended for caregivers, which allows for opportunities to learn from others' experiences, group problem‐solve and discuss everyday issues (Kingsnorth et al, 2011; Law et al, 2001; Shilling et al, 2013).…”

What are the priority needs for those caring for children and young people with complex neurodisability within an ethnically diverse UK context? - The feasibility phase of the ENCOMPASS study

“…Peer support is therefore also recommended for this caregiver population, which allows for opportunities to learn from others' experiences, group problem-solve and discuss everyday issues (10) (11) (12). Multi-faceted family-centred interventions can positively influence the wellbeing of caregivers by providing practical and social support for the child or young person and their caregivers (13).…”