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

• Published in: Child : care, health & development health & development, 2011-11, Vol.37 (6), p.821-832
• Main Authors: van Staa, A. L., Jedeloo, S., van Meeteren, J., Latour, J. M.
• Format: Article
• Language: English
• Subjects: Adolescent; adult-oriented care; Age Factors; Chronic Disease; chronic illness; complex healthcare needs; Congenital Impairments; Delivery of Health Care - methods; Female; Haemophilia; Health care; Health services; Health Services Accessibility; Health Services Needs and Demand; Humans; Interviews; Male; Parent Participation; Parent School Relationship; Parent-Child Relations; Parenting; Parents; Parents & parenting; Patient satisfaction; Pediatrics; Pediatrics - organization & administration; Program Development; Program Evaluation; Qualitative Research; Quality of Health Care - standards; Quality of Health Care - statistics & numerical data; Rheumatoid arthritis; Self Management; Semi Structured Interviews; Time Factors; transfer; transition; Transition to Adult Care - organization & administration; Transitions; Young Adult; Young adults
• ISSN: 0305-1862; 1365-2214
• DOI: 10.1111/j.1365-2214.2011.01261.x

Background  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. Methods  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. Results  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. Conclusions  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.