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Mothering a Child With Complexity and Rarity: A Narrative Inquiry Exploring Prader-Willi Syndrome.

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Mothers caring for children with Prader-Willi syndrome (PWS) face unique daily challenges. Understanding these experiences can improve social and clinical support for PWS families.

Keywords:
caregivingcomplexitydevelopmental disabilitydisability (children)disparitiesillness and disease (children)lived experiencemothersneurological disorderquality of life

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Area of Science:

  • Pediatric Health
  • Maternal Health
  • Genetics and Rare Diseases

Background:

  • Prader-Willi syndrome (PWS) knowledge often focuses on pathology, neglecting mothers' daily caregiving experiences.
  • Existing medicalized descriptions overlook the complexities of managing PWS, including hyperphagia and anxiety.
  • Mothers' lived experiences offer crucial insights into the realities of raising children with PWS.

Purpose of the Study:

  • To explore the daily experiences of mothers caring for children with genetically confirmed Prader-Willi syndrome (PWS).
  • To understand the challenges and nuances of nurturing children with PWS, focusing on those with hyperphagia.
  • To generate expanded narratives that inform social and clinical perspectives on PWS care.

Main Methods:

  • A narrative inquiry approach was employed, utilizing storied accounts from mothers.
  • Four mothers of children aged 3-17 with genetically confirmed PWS and hyperphagia were interviewed 8-12 times over 12 months.
  • Collaborative analysis of field texts and narrative accounts facilitated co-composition of findings.

Main Results:

  • Daily experiences revealed themes of complexity, rarity, the desire for normalcy, and the transformation of ordinary moments.
  • Mothers' narratives highlighted experiences of isolation, managing challenging behaviors, and adhering to normative standards.
  • Key narrative threads included the "work" of nurturing and contributing to care, alongside alternative stories of mothering.

Conclusions:

  • Understanding mothers' day-to-day realities is essential for shifting social and clinical perspectives on PWS.
  • Recommendations include addressing the complexities of mothering, prioritizing quality of life over mere functionality, and re-storying support systems.
  • Engaging mothers in determining care priorities is crucial for improving health and social care practices for PWS families.