To explore access to respite care services through the acute care services from the perspectives of parents of autistic children
Citation:
Cooke, Emma Louise, To explore access to respite care services through the acute care services from the perspectives of parents of autistic children, Trinity College Dublin, School of Nursing & Midwifery, Nursing, 2023Download Item:
Abstract:
Background: Research has consistently shown that parenting an autistic child can
be challenging and stressful. Respite care offers a break for parents who
experience such stress and also provides positive opportunities for the child to
interact with their peers. In the absence of defined pathways to respite care in
Ireland, parents of autistic children are accessing the acute services as a means to
accessing respite care. To date, little is known about parental experiences of
accessing respite care services, especially with respect to the complex decision-
making involved and navigation of pathways. This study provides a comprehensive
understanding of parent’s lived experience of accessing respite care for their
autistic child through the acute care services.
Method: A hermeneutic phenomenological approach underpinned the collection
and analysis of data. Semi-structured interviews of 15 parents who had experience
of accessing respite care through the acute care services for their autistic child took
place during 2020 and 2021.
Results: Analysis of the interview data, using Van Manen’s framework (2007,
2014) revealed five themes and 11 corresponding subthemes that reflected
parents’ lived experiences. The five overarching themes are as follows: Parents’
experience of caring for an autistic child; Complex system of multiple interactions
with services and health and social care professionals; Accessing acute care
services for respite care: A last resort; Accessing respite care: An ongoing process
across the lifespan; Acquired knowledge and information: Requirements for
effective respite provision. Findings identified an overwhelming need for respite
care but parents were faced with many barriers when accessing respite across
their autistic’s child’s lifespan.
Conclusion: This study provides a unique insight into the lived experience of
accessing respite care through the acute care services from the perspective of
parents of autistic children. Findings identified a number of implications for practice,
policy, service delivery, education as well as social and cultural implications. In
summary, this study highlights a critical need for effective implementation of
integrated healthcare services for autistic children and adolescents whose numbers
are rapidly growing.
Sponsor
Grant Number
HSE Integrated Care Programme for Children
Description:
APPROVED
Author: Cooke, Emma Louise
Advisor:
Smith, ValerieBrenner, Maria
Publisher:
Trinity College Dublin. School of Nursing & Midwifery. Discipline of NursingType of material:
ThesisCollections
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Full text availableKeywords:
Respite Care, Autism, Integrated Care, Mental Health, AccessMetadata
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