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

Authors :
Robertson, Eden G.
Kelada, Lauren
Best, Stephanie
Goranitis, Ilias
Pierce, Kristine
Roberts, Natalie J
Sachdev, Rani
Le Marne, Fleur
Macintosh, Rebecca
Beavis, Erin
Bye, Annie
Palmer, Elizabeth E.
Source :
Developmental Medicine & Child Neurology; Feb2024, Vol. 66 Issue 2, p206-215, 10p
Publication Year :
2024

Abstract

Aim: To 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. Method: As 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. Results: Seventy‐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). Interpretation: Future 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. What this paper adds: Caregiver social care‐related quality of life (SCrQoL) varied widely, from 'ideal state' to 'high needs state'.Most common high needs were doing enjoyable activities and self‐care.Caregivers with higher SCrQoL may perceive their child's illness as less threatening.SCrQoL does not appear to be related to caregiver activation in this sample. [ABSTRACT FROM AUTHOR]

Details

Language :
English
ISSN :
00121622
Volume :
66
Issue :
2
Database :
Complementary Index
Journal :
Developmental Medicine & Child Neurology
Publication Type :
Academic Journal
Accession number :
174546895
Full Text :
https://doi.org/10.1111/dmcn.15695