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

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. 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. 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. 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.

Kingsnorth S ，Gall C ，Beayni S ，Rigby P ... -  《-》

Family pediatrics: report of the Task Force on the Family.

Schor EL ，American Academy of Pediatrics Task Force on the Family 《-》

Meeting the needs of parents around the time of diagnosis of disability among their children: evaluation of a novel program for information, support, and liaison by key workers.

Rahi JS ，Manaras I ，Tuomainen H ，Hundt GL ... -  《-》

Crossing the transition chasm: experiences and recommendations for improving transitional care of young adults, parents and providers.

Transition from paediatric to adult healthcare has received little attention in the Netherlands. This study aimed to: (i) map experiences with the transfer to adult care of young adults with chronic conditions; and (ii) identify recommendations for transitional care of young adults, their parents and healthcare providers. Semi-structured interviews with 24 young adults after transfer (aged 15-22 years; diagnosed with haemophilia, diabetes mellitus, spina bifida, congenital heart disorders, cystic fibrosis, juvenile rheumatoid arthritis or sickle cell disease), 24 parents and 17 healthcare providers. Thematic analysis was performed. Only the haemophilia department offered a structured transition programme, most patients had not been prepared for transition. Experiences and views of patients, parents and professionals mainly overlapped and were condensed into four core themes. Two are related to moving to adult care: (1) 'leaving paediatric care is a logical step'. Leaving familiar surroundings was harder for parents than for young adults who displayed a positive 'wait-and-see' attitude; and (2) 'transition is complicated by cultural gaps between paediatric and adult services'. Young adults and parents felt lost after transfer and recommended their peers 'to be alert and involved'. Providers also recognized the cultural chasm between both services and worried about non-compliance, lost to follow-up and lack of independence. Two other themes indicated priorities for improvement: (3) 'better patient and parent preparation' for differences between healthcare settings and for new roles and responsibilities with respect to self-management; and (4) 'more collaboration and personal links' between paediatric and adult care providers. Action is required to cross the chasm between paediatric and adult-oriented care. Preparation for transition should start early and focus on strengthening adolescents' independency without undermining parental involvement. Building bridges between services, gaining trust and investing in new personal relations is a challenge for all parties involved: transition is about responding and bonding.

van Staa AL ，Jedeloo S ，van Meeteren J ，Latour JM ... -  《-》

Exploring the role of partnership in the home care of children with special health needs: qualitative findings from two service evaluations.

McIntosh J ，Runciman P 《INTERNATIONAL JOURNAL OF NURSING STUDIES》