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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.

Lewis SA, Noyes J - BMC Pediatr (2013)

Bottom Line: Translation of transition policies/guidelines into practice was weak.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.

View Article: PubMed Central - HTML - PubMed

Affiliation: Centre for Health-Related Research, School of Healthcare Sciences, Bangor University, Bangor LL57 2EF, UK. sheila.lewis3@wales.nhs.uk.

ABSTRACT

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.

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Related in: MedlinePlus

Theoretical Framework post-hoc development.
© Copyright Policy - open-access
Related In: Results  -  Collection

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Figure 6: Theoretical Framework post-hoc development.

Mentions: At the end of the analysis we had an overall picture of where expected patterns in the theoretical framework (Figures 6 and 7) and propositions (Table 1) matched with observed patterns in Case study data. These data were used to support and further develop the theoretical framework and a programme theory to inform future intervention and practice development.


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.

Lewis SA, Noyes J - BMC Pediatr (2013)

Theoretical Framework post-hoc development.
© Copyright Policy - open-access
Related In: Results  -  Collection

License
Show All Figures
getmorefigures.php?uid=PMC4016204&req=5

Figure 6: Theoretical Framework post-hoc development.
Mentions: At the end of the analysis we had an overall picture of where expected patterns in the theoretical framework (Figures 6 and 7) and propositions (Table 1) matched with observed patterns in Case study data. These data were used to support and further develop the theoretical framework and a programme theory to inform future intervention and practice development.

Bottom Line: Translation of transition policies/guidelines into practice was weak.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.

View Article: PubMed Central - HTML - PubMed

Affiliation: Centre for Health-Related Research, School of Healthcare Sciences, Bangor University, Bangor LL57 2EF, UK. sheila.lewis3@wales.nhs.uk.

ABSTRACT

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.

Show MeSH
Related in: MedlinePlus