A Survey of Parents’ Perspective of Receiving a Developmental Diagnosis for Their Child

Dados Bibliográficos

ID15720100
AutoresStacey Miller (0000-0001-6170-1845, University of British Columbia, autor correspondente), Stacey D Miller (BC Children’s Hospital, Vancouver, BC V6H 3V4, Canada), Maria Juricic (0009-0002-1325-1426, University of British Columbia), Jaimy Coates (0009-0003-1033-3327, BC Children's Hospital), Jeffrey N Bone (0000-0001-7704-1677, BC Children's Hospital), Ash Sandhu (0000-0001-5194-7892, BC Children's Hospital), Kishore Mulpuri (0000-0002-7713-6278, University of British Columbia), Maureen O’Donnell (University of British Columbia)
Ano2025
Volume12
Fascículo1
Páginas105-105
Data de publicação2025-01-17
Peer ReviewedSim
Open AccessSim
TipoARTICLE
PeriódicoChildren (JOURNAL)
Identificadores do periódicoISSN: 2227-9067 • E-ISSN: 2227-9067
EditoraMultidisciplinary Digital Publishing Institute (PUBLISHER • CH)
DOI10.3390/children12010105
PMID39857936
OpenAlexW4406526359
IdiomaEN
Citações recebidas1
Referências citadas23

Receiving a diagnosis, such as cerebral palsy (CP), can have lasting impacts on caregivers and families. Previous literature has described that caregivers wish to receive a diagnosis together, without delay, in a private, direct, honest, and sympathetic way. This study aimed to understand the experience of caregivers of children with cerebral palsy (CP) or similar conditions when receiving a diagnosis for their child.: Caregivers of children and youth aged 0-18 years with CP or a similar physical condition completed a survey investigating who first provided a diagnosis, and the way it was provided. Questions were based on the pediatric SPIKES framework. Caregivers were asked how receiving a diagnosis could have been improved. Thematic analysis of qualitative data were performed.: A total of 180 surveys were completed. Mean age at diagnosis was 19.0 (SD 25.7) months. Most caregivers reported the healthcare provider was sympathetic and understanding (75%) and clear and direct (69%). Only 25% of caregivers recalled being directed to where to find information; only 37% reported being told what their child does well or is expected to do well. Thematic analysis revealed three themes: (1) less waiting, (2) more compassionate communication, and, (3) information and support to move forward: Caregivers wanted the diagnosis to be timely and provided with compassion. Requests for greater information on the diagnosis, available support, and their child's future, suggest that greater care to support families in the aftermath of receiving a diagnosis is also needed

Developmental psychology · Perspective (graphical · Child Nutrition and Feeding Issues · Computer Science · Family and Disability Support Research · Infant Development and Preterm Care · Medicine · Psychology · Artificial Intelligence · Pediatrics