Leenen Loes A M, Wijnen Ben F M, van Haastregt Jolanda C M, de Kinderen Reina J A, Evers Silvia M A A, Majoie Marian H J M, van Heugten Caroline M
Faculty of Health, Medicine and Life Sciences, Department of Health Services Research, CAPHRI Care and Public Health Institute, Maastricht University, Maastricht, The Netherlands; Department of Research & Development, Academic Centre of Epileptology Kempenhaeghe Maastricht UMC+, The Netherlands; Department of Neurology, Academic Centre of Epileptology Kempenhaeghe Maastricht UMC+, The Netherlands.
Faculty of Health, Medicine and Life Sciences, Department of Health Services Research, CAPHRI Care and Public Health Institute, Maastricht University, Maastricht, The Netherlands; Department of Research & Development, Academic Centre of Epileptology Kempenhaeghe Maastricht UMC+, The Netherlands.
Epilepsy Behav. 2017 Aug;73:64-70. doi: 10.1016/j.yebeh.2017.05.023. Epub 2017 Jun 15.
People with epilepsy need to monitor and manage their symptoms. They, as well as their relatives, have to deal with the psychological burden, reflected in a reduced quality of life. Support in self-management can be of importance. We have developed a multi-component self-management intervention for patients and their relatives (MCI). This eight-week group intervention is conducted by nurse practitioners and consists of six two-hour sessions. The main components are: 1) providing self-management education, 2) stimulating proactive coping and goal-setting and 3) facilitating peer and social support. This study is a process evaluation to establish the feasibility, fidelity and acceptability of the intervention by assessing performance according to protocol, attendance and adherence, and the opinion of patients, relatives and facilitators about the intervention.
Study population consists of 52 patients with epilepsy living in the community (e.g. at home), 37 relatives and six facilitators. In this prospective mixed methods study, data were gathered using questionnaires for patients and relatives, registration forms for facilitators and by carrying out semi-structured group interviews with patients, relatives and facilitators.
Patients and relatives attended a mean of 5.2 sessions. Forty-seven (90%) patients and 32 (86.5%) relatives attended at least five sessions. The mean group size was 8.1 (SD=1.3; range 6-10). All elements of the intervention were offered to participants, except for one e-Health tool which was only available at the start of the study. Overall, the sessions were considered useful by patients, their relatives and facilitators. The participation of a relative (social support) and sharing ideas and feelings about having epilepsy with peers (peer support) were rated as important aspects.
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.
癫痫患者需要监测和管理自身症状。他们及其亲属不得不应对心理负担，这反映在生活质量下降上。自我管理方面的支持可能很重要。我们为患者及其亲属开发了一种多成分自我管理干预措施（MCI）。这种为期八周的小组干预由执业护士实施，包括六个两小时的课程。主要组成部分包括：1）提供自我管理教育，2）激发积极应对和目标设定，3）促进同伴和社会支持。本研究是一项过程评估，通过根据方案评估表现、出勤和依从性，以及患者、亲属和促进者对干预措施的看法，来确定该干预措施的可行性、保真度和可接受性。
研究人群包括52名居住在社区（如在家中）的癫痫患者、37名亲属和6名促进者。在这项前瞻性混合方法研究中，通过患者和亲属问卷、促进者登记表以及对患者、亲属和促进者进行半结构化小组访谈来收集数据。
患者和亲属平均参加了5.2次课程。47名（90%）患者和32名（86.5%）亲属至少参加了五次课程。平均小组规模为8.1（标准差=1.3；范围6 - 10）。除了一种仅在研究开始时可用的电子健康工具外，干预措施的所有要素都提供给了参与者。总体而言，患者、其亲属和促进者认为这些课程很有用。亲属的参与（社会支持）以及与同伴分享有关癫痫发作的想法和感受（同伴支持）被认为是重要方面。
该过程评估表明，MCI在很大程度上按照方案实施，出勤率高，参与者和促进者总体上对MCI持积极看法，并会向其他癫痫患者及其亲属推荐。总体而言，患者和亲属的依从性较高。根据患者、亲属和促进者的意见，MCI被认为是可行的。如果该干预措施被证明有效，建议实施。
