“Epilepsy, it’s just not sexy, is it?”: A qualitative exploration into health and social care professionals’ perspectives of people with intellectual disabilities and epilepsy, in social care

Abstract

Background

Epilepsy is prevalent in 22.2% of the intellectual disability (ID) population, with complexities spanning across health and social care sectors. Minimal research has been conducted to explore the experiences of epilepsy care within social care, despite its significance.

Methodology

Qualitative methodologies, using semi-structured interviews, were used to explore the experiences of health and social care professionals within the United Kingdom and analysed using Braun and Clarke’s reflexive thematic analysis framework.

Results

Four overarching themes were constructed from 11 interviews a) “It’s just not sexy, is it?”: Barriers to good epilepsy care, b) “My mission is to make their life better”: Facilitators of good epilepsy care, c) “Sometimes they appear frightened”: Impact of epilepsy, d) “Epilepsy training as a mandatory”: Future of epilepsy care. Fear was the most prevalent emotion described by participants throughout, which was perpetuated by the lack of resources and understanding/awareness, such as training. However, facilitating better epilepsy care for people with ID, can help reduce fear, and promote better wellbeing in all. Participants made recommendations such as mandating epilepsy training, and involving all key stakeholders, including families of people with ID, to improve epilepsy care in the future.

Conclusion

Mandating epilepsy training in health and social care settings is beneficial for care delivery and reducing the impact of epilepsy upon families and caregivers. Involving key stakeholders, such as families and caregivers, in all aspects of epilepsy care for people with ID, improves communication, service delivery and quality.