Parent Representatives' Experiences of Participating in Children's Disability Network Team Service Improvement Groups in Ireland: A Qualitative Study
Geraldine Moran, Noreen O'Leary, Katie Robinson, Hannah Christie, Alison Grant, Alyssa Garland, Eileen Doyle, Rosa Tomro‐Hofmann, Aoife Lily GallagherABSTRACT
Background
Effective patient and public involvement and engagement (PPIE) is an essential element of a quality healthcare system. In recent years, public health services for children with disabilities in Ireland have sought to include the voice of parent representatives in service improvement. Such initiatives provide important learning opportunities for comparable public health systems internationally.
Objective
This study aimed to explore parents' experiences of the representative role within Ireland's Children's Disability Network Teams. Understanding these experiences can inform the development and implementation of meaningful PPIE in service development in Ireland and beyond.
Design
A descriptive qualitative study was undertaken with guidance from a PPIE parent advisory group. Data were gathered via semi‐structured online interviews, transcribed and analysed thematically. Findings were reviewed by the PPIE parent advisory group.
Setting and Participants
Eleven participants were recruited to the study from a diverse range of health regions across Ireland. All participants had direct experience as a member of a parent representative forum related to children's disability services.
Results
Four themes were identified: (i) From the individual to the collective, parent motivations to become a representative; (ii) An ambiguous and informal role, with unintended consequences; (iii) The health system as a controlling and transactional organisation; and (iv) Unheard, unseen, and unsafe: The burden of representation.
Conclusions
Participants described experiences which reveal psychological, logistical and organisational barriers that limited the possibility of meaningful partnership and influence within service improvement processes. The findings demonstrate the importance of ensuring that the role of parent representative is clearly defined and formalised, and of the need to provide support and training around the role for parents. The study findings also highlight the importance of ensuring parents are properly recompensed for their time and efforts. Enabling parent representatives to connect informally with one another may mitigate the emotional burden of the role. More broadly, the findings suggest that meaningful partnership requires not only formal involvement structures but also transparency, trust and genuine opportunities to influence decision‐making.
Lived Experience
PPIE contributors collaborated in the study design and developed the interview guide, supported recruitment, contributed to interpretation and refinement of themes, informed the discussion of findings, and reviewed the final manuscript.