Parents as transition experts? Qualitative findings from a pilot parent-led peer support group

Background This paper focuses on the introduction of parents as 'transition experts' within a paediatric rehabilitation hospital. Through the personal experience of raising a young adult with special healthcare needs, Family Facilitators are knowledgeable about the processes of social and healthcare service transfer and transition to adulthood. Following a needs assessment, a pilot transition support group was established for parents of youth who were eligible for augmentative communication support. The goal was to provide informational, emotional and affirmational support during this stressful period. This study examined the impact of the Family Facilitator-led Transition Peer Support Group on parents' knowledge, skill and level of support in planning for the future. Methods Qualitative methods were used to explore benefits, limitations and outcomes of the parent support group. In addition to a review of 10 narrative field notes maintained for each session by the Family Facilitator and four session feedback forms, a 90-min focus group was conducted with eight core members. Results Qualitative examination of the data revealed three themes: (i) increased awareness related to personal challenges in planning and shifting viewpoints on future orientation; (ii) increased active planning with regard to knowledge building and actions taken; and (iii) the value of experiential knowledge. Conclusions Parents reported gaining new knowledge and became more active and future-oriented in their planning. Further, they strongly valued the facilitator role and benefited from the social support provided by the group. Findings provide a unique snapshot of parental needs. Individualized support with an emphasis on citizenship, participation and inclusion were targeted topics. Future work should continue to explore optimal mechanisms for the provision of parent-focused transition support and the inclusion of parents as experts within healthcare settings.