Dataset Information

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:

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.

SUBMITTER: Lewis SA

PROVIDER: S-EPMC4016204 | biostudies-literature | 2013 Oct

REPOSITORIES: biostudies-literature

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Publications

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 Sheila A SA Noyes Jane J

BMC pediatrics 20131016

<h4>Background</h4>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. ...[more]

PMID: 24131769

Similar Datasets

Project description:PurposeTo use a qualitative research approach to determine children's understandings of epilepsy and their epilepsy treatment.MethodsChildren aged 7-16 years with physician-confirmed active epilepsy (i.e., having had an epileptic seizure in the past year and or currently taking antiepileptic drugs (AEDs), and not known to have an intellectual disability, were invited to participate. Children had semi-structured interviews separately on two occasions. Between the first and second interviews, an observation of a routine epilepsy clinic appointment of individual children was conducted, and was then discussed during the second interview. Participatory research tools were used in both child interviews to facilitate discussions. Interviews were audio recorded and transcribed, pseudonymized and entered into NVivo (version 12, QSR International). Data were analyzed using a thematic approach.ResultsTwenty-three children of mean age 10.1 years (range 8-14), mean duration of epilepsy of 4.6 years (range 2-10) were enrolled. Twelve were 12 female; 7 had focal, 14 had generalized, and 2 had combined epilepsy; 20 were on monotherapy; and 16 had tried previous AEDs. All had an initial (first) interview; 20 were observed during a clinic appointment and had a second interview. Five broad themes emerged: understanding of epilepsy; understanding of seizures; understanding of medication; understanding of children's role in clinical appointments; influences on children's understanding. Children spoke about what epilepsy meant by describing the physical sensations of having a seizure or through the act of taking medication. Children described the role they had, or felt they should have, but reported challenges in being meaningfully involved in clinical appointments. While healthcare professionals were initial information nodes, epilepsy information from parents appeared to be more significant for children.ConclusionsThe perspectives of children with epilepsy are valuable for clinicians to understand; assumptions should not be made that children's views can be accessed via parents. Clinicians need to be constantly aware of children's views and ways of understanding and communicating about their epilepsy. To support this, the research - drawing on children's words, meanings, and stories - was used to inform an easily accessible, gender-neutral, animation about epilepsy that provides information about the condition, seizures, and medication (https://youtu.be/MO7xXL2ZXP8).

Project description:BackgroundIn order to tackle the considerable treatment gap for epilepsy in many low- and middle-income countries (LMICs), a task sharing model is recommended whereby care is integrated into primary health services. However, there are limited data on implementation and impact of such services in LMICs. Our study aimed to explore the perspectives of service users and caregivers on the accessibility, experience and perceived impact of epilepsy treatment received in a task-shared model in a rural district of Ethiopia.MethodsA qualitative study was carried out using interviews with purposively sampled service users (n =?13) and caregivers (n =?3) from a community-ascertained cohort of people with epilepsy receiving integrated services in primary care in rural Ethiopia. Interviews followed a topic guide with questions regarding acceptability, satisfaction, barriers to access care, pathways through care and impact of services. Framework analysis was employed to analyse the data.ResultsProximity of the new service in local primary health centers decreased the cost of transportation for the majority of service users thus improving access to services. First-hand experience of services was in some cases associated with a willingness to promote the services and inform others of the existence of effective biomedical treatment for epilepsy. However, most service users and their caregivers continued to seek help from traditional healers alongside biomedical care. Most of the care received was focused on medication provision with limited information provided on how to manage their illness and its effects. Caregivers and service users spoke about the high emotional and financial burden of the disease and lack of ongoing practical and emotional support. The majority of participants reported clinical improvement on medication, which in over half of the participants was associated with ability to return to money generating activities.ConclusionsTask-sharing improved the accessibility of epilepsy care for services users and caregivers and was perceived as having a positive impact on symptoms and productivity. Nonetheless, promotion of self-management, holistic care and family engagement were highlighted as areas requiring further improvement. Future work on implementing chronic care models in LMIC contexts is warranted.

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Project description:BackgroundRecruiting children to clinical trials is perceived to be challenging. To identify ways to optimise recruitment and its conduct, we compared how parents and practitioners described their experiences of recruitment to clinical trials.Methods and findingsThis qualitative study ran alongside four children's clinical trials in 11 UK research sites. It compared analyses of semi-structured interviews with analyses of audio-recordings of practitioner-family dialogue during trial recruitment discussions. Parents from 59 families were interviewed; 41 had participated in audio-recorded recruitment discussions. 31 practitioners were interviewed. Parents said little in the recruitment discussions contributing a median 16% of the total dialogue and asking a median of one question. Despite this, parents reported a positive experience of the trial approach describing a sense of comfort and safety. Even if they declined or if the discussion took place at a difficult time, parents understood the need to approach them and spoke of the value of research. Some parents viewed participation as an 'exciting' opportunity. By contrast, practitioners often worried that approaching families about research burdened families. Some practitioners implied that recruiting to clinical trials was something which they found aversive. Many were also concerned about the amount of information they had to provide and believed this overwhelmed families. Whilst some practitioners thought the trial information leaflets were of little use to families, parents reported that they used and valued the leaflets. However, both parties agreed that the leaflets were too long and wanted them to be more reader-friendly.ConclusionsParents were more positive about being approached to enter their child into a clinical trial than practitioners anticipated. The concerns of some practitioners, that parents would be overburdened, were unfounded. Educating practitioners about how families perceive clinical trials and providing them with 'moral' support in approaching families may benefit paediatric research and, ultimately, patients.

Dataset Information

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.

Background

Method

Results

Conclusion

Publications

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.

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