A research study to explore the experiences and perceptions of disabled youth and their families on family-centred care and play as a therapeutic intervention to inform the development of a novel paediatric intervention.
This study had a constructionist ontology with reflexive thematic analysis. Qualitative in-depth semi-structured interviews were conducted with 22 caregivers and three disabled young people aged ≤21 years, living across New Zealand. Data were interpreted using latent reflexive themes.
Key themes of Therapy Experiences and Family Characteristics were developed. Families described their experiences with healthcare and support services as both challenging and/or positive. Family Characteristics included the families’ capacity and the role in their child’s life. Experiences of play in therapy were connected to positive family perceptions of family-centred care and relationships.
The lives of disabled youth and their family are complex. Capacity of both the family and the service influence the delivery and engagement with family-centred care. There is a mismatch in family capacity and physiotherapist’s understanding, which presents challenges to developing family-centred interventions. To understand family capacity, therapists must form trusting relationships, share knowledge, and hold space to hear the families’ voice. Families value the expertise of therapists to guide and scaffold fun interventions working towards long term participatory focused outcomes.
Further research will:
1) Use the findings from this study and earlier studies involving other stakeholders in paediatric physiotherapy delivery, to inform the development of a novel play-based family-centred intervention for disabled young people.
2) Explore disabled young people and their families’ perceptions of the newly developed intervention.
Strong professional-family relationships provide valuable insight for Physiotherapists to better understand family capacity. This understanding helps physiotherapists to support disabled youth and their families through timely information with consideration of family capacity. Incorporating optional, tailored and scaffolded play-based activities into everyday routines may provide a realistic opportunity to support disabled youth in their home environment. Physiotherapists’ awareness of challenges to family-centred care may aid discussion and partnership with families of disabled youth to facilitate the co-creation of meaningful play-based interventions. Results from this study can be translated into physiotherapy practice by providing guidance for open dialogue between physiotherapists and families regarding both family and service capacity. Results from this programme of study will be disseminated through professional networks to provide an adjunct for paediatric physiotherapists to support disabled youth and their families.
Family-Centred Care
Play
