Families’ Experiences of PFD in Their Children with Intellectual/Developmental Disabilities in England

April 21, 2022 1:00 pm

This qualitative study explored parents’ views of pediatric feeding disorder (PFD) in their children with an intellectual or developmental disability (IDD) and related supports in England. Ethical approval for this study was obtained in October 2020 by Tizard Centre Ethics Committee, University of Kent, Canterbury, UK. Recruitment occurred through mailing lists and social media. Purposive sampling was used for this study and participants provided informed consent. Twenty semi-structured interviews were carried out and participants were 22 parents of children with an IDD exhibiting PFD. Interviews were transcribed and data was analyzed using a Straussian grounded theory approach. Data was coded into an open coding framework that was developed from the themes emerging from the data. Following this, an axial coding framework was developed from patterns of emerging relations between the open codes. Data was then coded into the axial coding framework. This resulted in selective codes that captured the complex interactions in the data. The study found that families are significantly impacted by PFD in a variety of ways. Families had varying experiences of receiving support from services and families’ experiences with services had an impact on what PFD was like for families. Some families were able to obtain support for their child’s PFD which they perceived to be appropriate, while many others were not able to obtain supports for their child’s PFD which they perceived to be appropriate. Receiving appropriate supports alleviated the impacted of the PFD for parents. When parents perceived the support to be inappropriate or unhelpful, it compounded the impact of the PFD: the struggle was not only with feeding but also with services recognising that the PFD existed and needed supporting. There was also an interaction between parents understanding their child’s PFD and the impact which the PFD had on families – when families understood why their child’s PFD was occurring, the impact of the PFD was alleviated for parents. Interactions with services and the quality of services affected families’ understanding of why their child’s PFD was occurring. This study found that the meaning derived from understanding why the PFD was occurring alleviated the impact of the PFD for parents. This shows that families need meaningful support that recognizes their struggle. Further improvements are needed in approaches to meaning-making with families, as this is important for families and mediates the impact of PFD on family-wellbeing.

Learning Objective
Participants will be able to:

  • explore families' experiences of pediatric feeding disorder and related supports for their children with intellectual/developmental disabilities in England

Speakers

  • Suzy Mejia-Buenano, MSc in Applied Behaviour Analysis in IDD

    Suzy is a PhD Researcher in Applied Psychology at the Tizard Centre, University of Kent in the UK. She is also a Lecturer and Graduate Teaching Assistant at the Tizard Centre. Suzy has a Masters degree in Applied Behaviour Analysis in Intellectual and Developmental Disability and is a Board Certified Behaviour Analyst. She first became interested in pediatric feeding disorders when supporting autistic children and children with neurodevelopmental disabilities in the US. She is committed to disseminating evidence-based practice for pediatric feeding disorders internationally and improving the quality of services for pediatric feeding disorders available in the UK.

    Financial: Suzy Mejia-Buenanao receives a salary from Tizard Centre, University of Kent.
    Non-Financial: Certified by the Behavior Analyst Certification Board, student member of the UK Society for Behaviour Analysis.

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