“Sometimes, it just stops me from doing anything”: A qualitative exploration of epilepsy management in people with intellectual disabilities and their carers

Abstract

PurposeEpilepsy affects 1 in 5 people with an intellectual disability (ID), but little is known about their experiences of living with epilepsy. A qualitative study was conducted to investigate the impact and management of epilepsy in people with ID.Materials and methodsPeople with epilepsy and ID and their carers were invited to take part in semi-structured interviews. Eleven participants with ID and their carers were interviewed together, one participant with ID and their carer were interviewed separately, two interviews took place with the participant with ID only, and one interview took place with the carer only. The interviews were transcribed verbatim, coded, and analyzed thematically (dual independent coding for 30% of the transcripts).ResultsThree themes emerged (participant characteristics, living with epilepsy, epilepsy management and information needs) which indicated the following: 1) diversity regarding health profiles, communication abilities, severity of epilepsy, perceived control of epilepsy, and support needs; 2) a reduction in severity and frequency of seizures for a sizeable proportion of participants through antiepileptic drugs; 3) the lifelong impact of epilepsy and related seizures on participants' activities and quality of life; 4) the perceived burden of epilepsy and difficulty managing the condition for a large proportion of participants; 5) high levels of satisfaction with epilepsy-related services and care; and 6) an overall lack of written accessible information about epilepsy.ConclusionsThis study has highlighted a significant impact of epilepsy and related seizures on the daily lives and quality of life of people with ID. Although a sizeable proportion of participants and their carers considered their epilepsy to be well controlled, the majority reported difficulties managing epilepsy and minimizing its impact on their wellbeing. Excluding care staff and the support provided by epilepsy clinics, the participants had not accessed any adapted self-management or information resources about epilepsy.

Reciprocal burden: Adults with drug-resistant epilepsy reflect upon informal caregiver support

“…Factors such as lower patient quality of life scores, higher numbers of anti-seizure drugs, and lower levels of caregiver education contributed to increased caregiver burden [8]. Additionally, the combination of intellectual disability and epilepsy, was found to carry greater disease burden for patient-caregiver dyads in comparison to the general epilepsy population [12], emphasizing distinct sub-group challenges for clinicians.…”

“…From the subjective perspective of caregivers, the negative impact of epilepsy on quality of life has been well described and clearly linked to caregiver burden [2,7,8,12,13]. Yet how the recipients of care perceive the personal meaning of care-recipience in everyday life appears under researched.…”

Do health consultations for people with learning disabilities meet expectations? A narrative literature review

“…An interview study of people with learning disabilities and epilepsy ( n = 40) accessed only those who had regular contact with services, identifying high satisfaction with specialist services, but some concerns that explanations were directed at service users rather than carers (Mengoni et al., ). However, service evaluations cannot explore why people with learning disabilities, or their carers on their behalf, choose not to access health services, particularly annual health checks, although the use of pre‐existing self‐advocacy groups to evaluate medical consultations (Spassiani et al., ; Walmsley, ) has effectively shown that annual health checks themselves can present challenges to the person's self‐esteem and ability to engage with their health care.…”

Wordless intervention for people with epilepsy and learning disabilities (WIELD): a randomised controlled feasibility trial

“…The interview schedule also explored the self-management, information and support needs of participants, in relation to their experience of epilepsy, and this is reported elsewhere. 35 Sample size One of the study objectives was to assess variation in the ELDQOL in order to determine whether the intervention is likely to achieve a 10% increase in the participants' quality of life and to allow exclusion of an effect size of <0. 36 Ten per cent equates to an effect size of ∼0.…”