Fulfilling the needs of caregivers in delivering health services to children with developmental and epileptic encephalopathies

Abstract

Introduction

Patients with developmental and epileptic encephalopathies (DEEs) have multiple comorbidities and high healthcare needs. Whether health services meet the needs of this patient population and their families is not well understood. We explored caregiver perspectives on their child's health service use, satisfaction with health services, and priorities for improvement.

Methods

Caregivers of patients with DEEs completed online questionnaires containing specifically designed quantitative and qualitative questions to assess their perceptions of their child's health service use over a 12-month period. We analysed the quantitative data using descriptive and non-parametric statistics and the qualitative data using content analysis.

Results

Seventy-five caregivers participated. Over 12-months, 52 (69.3 %) patients presented to the emergency department, 70 (93.3 %) saw ≥3 medical professionals, and 45 (60 %) saw ≥3 allied health professionals (n = 45, 60.0 %). Caregivers were satisfied with their child's healthcare when they perceived healthcare professionals to be compassionate and knowledgeable. Caregivers were dissatisfied when they perceived that healthcare professionals were not knowledgeable about DEEs, or they felt unheard, unsupported, needed to advocate for their child's healthcare and disability funding, and perceived care coordination to be lacking. Hospital care and parent psychological support were caregivers' top priorities for improvement to the healthcare system.

Discussion

Care coordination and access to knowledgeable healthcare professionals and psychological supports should be prioritised to achieve more appropriate models of care for patients with DEEs. Further research should evaluate models of care which incorporate these features to determine if they provide high value healthcare and improve the patient and family journey.