Process evaluation of a multi-component self-management intervention for adults with epilepsy (ZMILE study)

Abstract

This process evaluation revealed that the MCI was largely performed according to protocol, attendance rate was high, and participants and facilitators had, on the whole, a favourable opinion about the MCI, and would recommend it to others with epilepsy and their relatives. Overall, the adherence of patients and relatives was high. The MCI is considered feasible according to patients, relatives and facilitators. Implementation is recommended if the intervention proves to be effective.

Barriers and facilitators to implementation of epilepsy self-management programs: a systematic review using qualitative evidence synthesis methods

“…We identified 13 studies addressing facilitators and barriers to implementing self-management interventions for persons with epilepsy ( Fig. 1) [22,[40][41][42][43][47][48][49][50][51][52][53][54]. Study designs in this analysis included semi-structured interview (n = 5) [22,[40][41][42][43]; cross-sectional survey (n = 5) [47,48,50,53,54]; longitudinal survey (n = 1) [52], mixed-methods including group semi-structured interview, cross-sectional survey, and records review (n = 1) [49], and a discrete choice experiment (n = 1) [51].…”

“…1) [22,[40][41][42][43][47][48][49][50][51][52][53][54]. Study designs in this analysis included semi-structured interview (n = 5) [22,[40][41][42][43]; cross-sectional survey (n = 5) [47,48,50,53,54]; longitudinal survey (n = 1) [52], mixed-methods including group semi-structured interview, cross-sectional survey, and records review (n = 1) [49], and a discrete choice experiment (n = 1) [51]. Study respondents included patients with epilepsy, caregivers, and health care clinicians together [42,49,[52][53][54], patients and caregivers only [22,40,41,43,47,48,51], and health care clinicians [50].…”

“…• Provision of relevant topics that enabled self-management skill acquisition [42,48] • Involving caregivers in the intervention [49] Site/system Health care site or system where the self-management intervention is being implemented and evaluated that highlights the usability of the intervention…”

“…At the program level, facilitators included involving family members in the intervention [49], using an empowerment approach to help the patient develop self-management skills [41,54], and the format of the intervention (e.g., group format that included both the patient and caregiver) [42]. Additional program level factors include the ability to personalize materials to each patient [42,48,54], the availability of written materials [41,42,52], the ability to interact with a group [22,49], the provision of peer support [22,49], and the length and duration of the intervention sessions [22,49]. At the site/system level, facilitators included developing intervention materials using uniform program standards to ensure program fidelity across intervention sites [42].…”

“…At the program level, barriers included incongruent responses between patients and clinicians about the patient's problems and needs [53], incongruent opinions by clinicians, researchers, and social service providers on the necessary intervention content [50], and incongruent responses between patients and clinicians on who should lead the intervention and provide epilepsy selfmanagement education and support [53]. Additional barriers at the program level included educational content that was too general or lacking in personalization or tailoring to the patient, his or her disease state and relevant comorbidities [22,53,54], and not identifying what the patient views as important in self-management and living with epilepsy [49]. No relevance barriers were identified at the person or site/system levels.…”