Effective process or dangerous precipice: qualitative comparative embedded case study with young people with epilepsy and their parents during transition from children’s to adult services

Abstract

BackgroundTransition from children’s to adult epilepsy services is known to be challenging. Some young people partially or completely disengage from contact with services, thereby risking their health and wellbeing. We conducted a mixed-method systematic review that showed current epilepsy transition models enabling information exchange and developing self-care skills were not working well. We used synthesised evidence to develop a theoretical framework to inform this qualitative study. The aim was to address a critical research gap by exploring communication, information needs, and experiences of knowledge exchange in clinical settings by young people and their parents, during transition from children’s to adult epilepsy services.MethodQualitative comparative embedded Case study with 2 'transition’ cases (epilepsy services) in two hospitals. Fifty-eight participants: 30 young people (13–19 years) and 28 parents were interviewed in-depth (individual or focus group). Clinical documents/guidelines were collated. 'Framework’ thematic analysis was used. The theoretical framework was tested using themes, pattern matching and replication logic. Theory-based evaluation methods were used to understand how and why different models of service delivery worked.ResultsA joint epilepsy clinic for young people 14–17 years coordinated by children’s and adult services was more likely to influence young people’s behaviour by facilitating more positive engagement with adult healthcare professionals and retention of epilepsy-related self-care information. Critical success factors were continuity of care, on-going and consistent age-appropriate and person centred communication and repeated information exchange. Three young people who experienced a single handover clinic disengaged from services. Psychosocial care was generally inadequate and healthcare professionals lacked awareness of memory impairment. Parents lacked knowledge, skills and support to enable their child to independently self-care. Translation of transition policies/guidelines into practice was weak.ConclusionFindings make a significant contribution to understanding why young people disengage from epilepsy services, why some parents prevent independent self-care, and what constitutes good communication and transition from the perspective of young people and parents. The type of service configuration, delivery and organisation influenced the behaviours of young people at transition to adult services. The novel theoretical framework was substantially supported, underwent further post-hoc development and can be used in future practice/intervention development and research.

Children’s Experiences of Epilepsy: A Systematic Review of Qualitative Studies

“…23, 70 -73 However, what may be unique in epilepsy is that children are conscious about the visibility of their condition, particularly because of seizures, and feel they suffer consequent discrimination. 11,16,20,21,29,30,34,45,48 They are unable to protect their own privacy regarding their diagnosis, and constantly feel susceptible to injury. 14,15,18,19,26,27,38,46,47 Our review involved a comprehensive search and independent assessment of the transparency of study reporting.…”

“…And so they kind of fi gured out on their own. 30 Humiliating involuntary action I hate when I fall down...I get mad at my seizures because I don't like them…sometimes I kind of hit people...I don't really mean to hit people. 18 10, 15, 17 -19, 23, 24, 27 -29, 32, 33, 37, 40, 42 -44, 46 What really gets you is if they see you having a fi t. I fi nd that really embarrassing, my hands start getting all jerky and then I just get really self-conscious of it and that can be really embarrassing.…”

“…18 Teenage female participants wished for more information about fertility and pregnancy. 30 Participants also desired verbal information to be reinforced with accessible, relevant written material, such as leaflets.…”

“…57 More research is recommended to assess perceptions and concerns about fertility and pregnancy in adolescent patients with epilepsy, as these topics had not been addressed in depth in current studies. 30 Further research is also warranted to address patient concerns regarding the heritability of the disease.…”

Intervention Now to Eliminate Repeat Unintended Pregnancy in Teenagers (INTERUPT): a systematic review of intervention effectiveness and cost-effectiveness, and qualitative and realist synthesis of implementation factors and user engagement

“…A programme theory is the theory of how an intervention is intended to work. 170 The programme logic comprises all the elements and components of an intervention, and how they fit together for the delivery of the intervention.…”