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Decision-making and future planning for children with life-limiting conditions: a qualitative systematic review and

E Popejoy1, K Pollock2, K Almack1

  • 1University of Nottingham School of Health Sciences, Nottingham, UK.

Child: Care, Health and Development
|April 13, 2017
PubMed

Insights

Making treatment decisions for children with life-limiting conditions is complex. Understanding individual family needs and contextual factors is crucial for effective future care planning in pediatric palliative care.

Area of Science:

  • Pediatric Palliative Care
  • Healthcare Decision-Making
  • Family-Centered Care

Background:

  • Increasing prevalence of children with life-limiting and life-threatening conditions globally.
  • Significant rise in pediatric palliative care needs, with 1.2 million children worldwide requiring such services.
  • Limited understanding of the decision-making and future planning processes for these children and their families.

Purpose of the Study:

  • To systematically review and synthesize qualitative research on decision-making and future planning for children with life-limiting conditions.
  • To identify key factors influencing these complex processes from the perspectives of families and healthcare professionals.

Main Methods:

  • Systematic literature search across six databases, identifying 887 papers.
  • Inclusion of nine papers (five from database search, four from reference searching and author contact) based on predefined criteria.
  • Qualitative synthesis of findings through coding and thematic analysis, resulting in four analytical themes.

Main Results:

  • Nineteen descriptive themes were identified and synthesized into four analytical themes: decision factors, family factors, relational factors, and system factors.
  • Decision-making and future planning are highly individualized, requiring tailored approaches for each family.
  • Current understanding of the dynamic, relational, and contextual aspects of decision-making remains insufficient.

Conclusions:

  • Effective decision-making and future planning for children with life-limiting conditions necessitate an individualized approach.
  • Further research is essential to address the gaps in understanding the complex interplay of factors influencing these critical decisions.
  • Enhancing knowledge of dynamic, relational, and contextual elements is key to improving care for children with life-limiting conditions.
Abstract

Keywords:
decision-makinglife-limiting illnesssystematic review

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