TY - JOUR

T1 - Effective process or dangerous precipice

T2 - qualitative comparative embedded case study with young people with epilepsy and their parents during transition from children's to adult services

AU - Lewis, Sheila

AU - Noyes, Jane

PY - 2013/10/16

Y1 - 2013/10/16

N2 - BACKGROUND: Transition 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.METHOD: Qualitative 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.RESULTS: A 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.CONCLUSION: Findings 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.

AB - BACKGROUND: Transition 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.METHOD: Qualitative 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.RESULTS: A 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.CONCLUSION: Findings 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.

KW - Adolescent

KW - Adolescent Health Services

KW - Case-Control Studies

KW - Epilepsy

KW - Female

KW - Health Literacy

KW - Humans

KW - Male

KW - Models, Theoretical

KW - Neurology

KW - Parents

KW - Patient Care Team

KW - Patient Education as Topic

KW - Patient Participation

KW - Pediatrics

KW - Professional-Family Relations

KW - Professional-Patient Relations

KW - Qualitative Research

KW - Self Care

KW - Transition to Adult Care

KW - Young Adult

KW - Comparative Study

KW - Journal Article

U2 - 10.1186/1471-2431-13-169

DO - 10.1186/1471-2431-13-169

M3 - Article

C2 - 24131769

VL - 13

SP - 169

JO - BMC Pediatrics

JF - BMC Pediatrics

SN - 1471-2431

ER -