Quality of life in caregivers of a child with a developmental and epileptic encephalopathy

Abstract

AimTo explore the relationship between social care‐related quality of life (SCrQoL) for caregivers of a child with a developmental and epileptic encephalopathy (DEE; such as SCN2A and Dravet syndrome) and health literacy, illness perceptions, and caregiver activation.MethodAs part of a larger pre‐post pilot study of an information linker service, caregivers completed a baseline questionnaire which included demographics and measures to assess SCrQoL, health literacy, illness perceptions, and caregiver activation. We used Spearman's Rho to determine relationships between variables.ResultsSeventy‐two caregivers completed the questionnaire. Total SCrQoL varied widely, ranging from an ‘ideal state’ to ‘high needs state’. Caregivers most frequently reported high needs regarding doing activities they enjoy and looking after themselves. Total SCrQoL was correlated with cognitive (r[70] = −0.414, p < 0.000) and emotional representations of illness (r[70] = −0.503, p < 0.000), but not coherence (r = −0.075, p = 0.529). Total SCrQoL was not correlated with health literacy (r[70] = 0.125, p = 0.295) or caregiver activation (r[70] = 0.181, p = 0.127).InterpretationFuture research should explore whether interventions that help caregivers cognitively reframe the negative experiences of having a child with a DEE, and support them to partake in activities they enjoy, boost their SCrQoL.

A personal life experience as a parent of children with TBC1D24‐related developmental and epileptic encephalopathy

“…I am a mother of two sons who have been diagnosed with TBC1D24 developmental and epileptic encephalopathy (DEE) 1, 2 . Ah Jie is 16 years old and Ah Wen is 12.…”