Human rights and support groups to improve quality of life, self-care and disability in epilepsy: [Rights and support groups for epilepsy]

Abstract

Background: People with epilepsy have multiple barriers to recovering their quality of life. The objective of the present study was to determine the impact of a community group intervention focused on the components of mutual aid and human rights, to improve the quality of life in people with epilepsy.

Methods: Prospective quasi-experimental study, incorporating pre- and post-intervention evaluations. There were 102 people who underwent an intervention focused on the central components of mutual aid groups (Active agency, Coping strategies, Emotion recognition and management, Problem solving, Supportive interaction, Identity construction, Trust, and Social networks) and in the QualityRights strategy. As evaluation instruments, scales were used to determine quality of life (QOLIE-10), treatment adherence (Morisky Test), self-care behaviors, perception of disability and quality in the provision of health services.

Results: Correlations were shown between the variables proposed for quality of life. The intervention showed an improvement in all variables and a moderate to large effect in the self-care domain. There was a significant effect size in the self-care and quality of life variables with the intervention. Pharmacological adherence showed a moderate effect size in young people, adults and older adults. Regarding the perception of disability, the effect size was found only in adults. The pharmacological adherence variable also had a moderate effect size. This does specify the age groups, but not in the general sample.

Conclusion: Seizure-free time constitutes a fundamental element in recovery. However, psychosocial conditions constitute key elements to achieve a better quality of life in people with epilepsy.

Keywords: Disabled persons; Epilepsy; Mental health services; Psychosocial support systems; Quality of health care; Quality of life.