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 ... -  《-》

Gaps in transitional care: what are the perceptions of adolescents, parents and providers?

  Several studies have investigated preferences and experiences of adolescents with different chronic conditions and their parents. Some have included the provider's perspective. Studies comparing the three perspectives on satisfaction with (transitional) care for different chronic conditions, however, are lacking. The main aim of this paper was to explore differences and similarities in perspectives between adolescents with chronic conditions, their parents and providers on transitional care. A secondary aim was to explore the extent to which such perspectives are disease-specific.   This quantitative study included 127 adolescents with juvenile rheumatoid arthritis (JRA), neuromuscular disorder with chronic ventilation (NMD), or diabetes Type I; 166 parents; and 19 care providers. To assess the experiences and perceptions of adolescents and parents on transitional care, we used the 'Mind the Gap' instrument. The survey for providers included a checklist of shortcomings in transitional care.   Adolescents rate current care significantly worse than parents on opportunities to make their own decisions and be seen without parents present. Adolescents also rated providers' current social skills lower than parents. Adolescents are more satisfied than their parents about transitional care process aspects such as co-ordination and communication between providers, but both groups indicated that the care process offers most room for improvement. Providers reported other aspects such as adolescents' lack of responsibility with regard to self-care and parents' difficulties with ceding control to their children. When looking at the three disease groups - JRA, NMD, diabetes, we found only small differences. According to providers, shortcomings in the care process with respect to guidelines, protocols and co-ordination are most prevalent.   Adolescents, parents and providers all report that there is room for improvement with regard to aspects of the care delivery process in transitional care. With respect to disease-specific issues we only found small differences.

Sonneveld HM ，Strating MM ，van Staa AL ，Nieboer AP ... -  《-》

Transition into adult healthcare services in Scotland: findings from a study concerning service users at the Scottish Spina Bifida Association.

Literature on interventions that enable young people with spina bifida and/or hydrocephalus to have smooth transition, into adult healthcare services, stress the need for the process to start early and to include all family members. The study reported here was set to quantify and articulate the experiences of service users who are or due to be going through the transition process in Scotland today. Focus group sessions, in the North of Scotland and in the 'Central Belt', captured rich qualitative data. A survey, sent to eligible participants on the Spina Bifida National database, offered complimentary data source. Despite the fact that the number of returned questionnaires was low (n = 20), data analysis identified a number of core recurring themes. These include issues concerning Communications, Respect, Choice and Control. Findings suggest that there is a significant chasm between the political rhetoric and the reality faced by young people with spina bifida moving to adult healthcare services. A possible way to facilitate successful transition of young people is using personal healthcare information as the locus for needed change. More research is needed to ascertain whether a 'Person-Centred Record', which is set to empower young people on their transition pathway, is an appropriate transition tool.

Levy S ，Wynd AH ，Carachi R 《-》

What is the perceived nature of parental care and support for young people with cystic fibrosis as they enter adult health services?

Iles N ，Lowton K 《-》

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 ... -  《-》