ArticleDevelopmental medicine and child neurology2024
Quality of life in caregivers of a child with a developmental and epileptic encephalopathy.
Article in Developmental medicine and child neurology, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers.
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Who cites it
12 citing papers in PubMed.
- Caregiver activation: a concept analysis.International journal of nursing studies advances · 2026Review
- Neurological complications of Zika virus and their impact on quality of life: a narrative review.Tropical medicine and health · 2026Review
- Illness Representations and Quality of Life Among Informal Cancer Caregivers: Examining the Role of Social Support.Healthcare (Basel, Switzerland) · 2026Article
- The spectrum of communication abilities in children with 12 rare neurodevelopmental disorders: a qualitative study with caregivers.Journal of child psychology and psychiatry, and allied disciplines · 2026Article
- Article
- Caregiver Burden and Well-being of Caregivers to Hospitalized Filipino Children with Neurological Conditions: A Cross-sectional Study.Acta medica Philippina · 2026Article
- Caregiver-reported meaningful change in functional domains for individuals with developmental and epileptic encephalopathy: A convergent mixed-methods design.Developmental medicine and child neurology · 2025Article
- "Just realising that I wasn't alone… was profound": a mixed-methods evaluation of a pilot peer-to-peer wellbeing program for carers of children with rare epilepsies.Orphanet journal of rare diseases · 2025Article
- Psychological wellbeing among parents of a child living with a serious chronic illness: A cross-sectional survey study.Journal of child health care : for professionals working with children in the hospital and community · 2025Article
- Use of the adult social care outcomes toolkit (ASCOT) in research studies: an international scoping review.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Article
- Quality of life in caregivers of a child with a developmental and epileptic encephalopathy.Developmental medicine and child neurology · 2024Article
- Quality of life, socioeconomic and psychological concerns in parents of children with tuberous sclerosis complex, STXBP1 and SYNGAP1 encephalopathies: a mixed method study.Frontiers in pediatrics · 2023Article
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Authors and funding
8 authors.
Funding
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. 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.
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