Personal and Environmental Factors Influencing Self-Determination of People With Intellectual Disabilities and Epilepsy: A Scoping Review.

Abstract

Background: Epilepsy is a chronic neurological disorder that is prevalent among people with intellectual disabilities, profoundly affecting various aspects of life. Understanding the association between epilepsy and reduced quality of life in this population may benefit from exploring self-determination, a key dimension of quality of life. Self-determination evolves throughout life, shaped by personal and environmental factors, including intellectual disabilities and access to supportive interventions. This review aims to map existing research to identify the personal and environmental factors that affect self-determination among people with intellectual disabilities and epilepsy.

Methods: Eight electronic databases (Embase, MEDLINE ALL, PsycINFO, CINAHL, Cochrane Central Register of Controlled Trials, Web of Science, ERIC and Google Scholar) were systematically searched in December 2022 and again on 2 October 2024 to update the previous search. All English-language studies presenting original research data on self-determination among people (above age 10) with intellectual disabilities and epilepsy were included, without date restrictions. The methodological quality of included studies was assessed using the Mixed Methods Appraisal Tool (MMAT). To extract the data, we used the PCC (population, concept and context) framework. To analyse the data, we employed descriptive thematic analysis.

Results: Of the 1485 records identified, nine studies were eligible. These studies employed a qualitative design (n = 7) or were quantitative case studies (n = 2). Together, the studies included 68 participants with varying levels of intellectual disabilities and types of epilepsy and 115 caregivers. Five overarching themes were identified: (1) different approaches to managing epilepsy (n = 4); (2) information sharing and a trust in the collaboration with health care professionals (n = 5); (3) the need for recognition and autonomy in health care and support (n = 5); (4) the tendency of parents and professionals to take over decision making and associated concerns, responsibilities and emotions (n = 6); (5) the importance of considering personal preferences in care and support (n = 5).

Discussion: This review reveals the complex interplay between personal factors (i.e., individual coping strategies) and environmental factors (i.e., characteristics of the relationships with parents and professionals) in shaping self-determination among people with intellectual disabilities and epilepsy. These insights stress the importance of developing interventions to enhance self-efficacy and of specific training to equip caregivers and professionals with autonomy supportive skills to improve well-being at the individual level. This review also highlights a need for quantitative studies to enhance generalisability of findings.