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"It Is a Whole Different Life from the Life I Used to Live": Assessing Parents' Support Needs in Paediatric

Samar M Aoun1,2,3, Roswitha Stegmann3, Renee Deleuil4

  • 1University of Western Australia, Crawley, WA 6009, Australia.

Children (Basel, Switzerland)
|March 25, 2022
PubMed

Insights

Parents of children with life-limiting illnesses found a systematic support assessment valuable. However, they reported unmet needs in practical, psychosocial, and emotional support, highlighting gaps beyond clinical services.

Area of Science:

  • Paediatric Palliative Care
  • Family Support Services

Background:

  • Children with life-limiting illnesses require comprehensive support for their families.
  • Existing support systems may not fully address the multifaceted needs of these families.

Purpose of the Study:

  • To assess the feasibility and acceptability of a systematic approach to identify and address parental support needs.
  • To evaluate the relevance of the intervention to parents of children with life-limiting illnesses.

Main Methods:

  • A feasibility study involving 28 parents in Western Australia (2018-2019).
  • The intervention included two assessment visits with a paediatric palliative care team.
  • Data collected through audio-recorded telephone interviews and analyzed using inductive thematic analysis.

Main Results:

  • All participating parents completed interviews, indicating high engagement.
  • Key themes included caregiving challenges, isolation, usefulness of the assessment, emotional responses, validation, and empowerment.
  • Parents found the systematic assessment practical and validating, but identified gaps in support.

Conclusions:

  • The systematic approach is valued by parents for addressing support needs.
  • While clinical support was affirmed, significant needs remain in practical, psychosocial, and emotional domains.
  • Palliative care services should collaborate with community networks and volunteer models to address non-clinical needs.
Abstract

Keywords:
caregivingcompassionate communitiesend-of-life careequitypalliative careparentspsychosocial supportpublic health approach

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