title: Parent Recommendations for Family Functioning With Prader-Willi Syndrome: A Rare Genetic Cause of Childhood Obesity.
abstract: Prader-Willi syndrome (PWS) is the most common genetic cause of childhood obesity. Neonates have hypotonia and may fail to growth and develop. Within a few years, behavioral problems occur along with insatiable hunger (hyperphagia) and the potential for excessive weight gain. The purpose of this study was to identify how families function when they have a child with PWS.
  
  
  METHODS
  This qualitative descriptive study was based on 20 face-to-face, audio-taped interviews with parents. They were asked to identify family responses to PWS and offer recommendations. Data were transcribed, coded and analyzed for commonalities and themes.
  
  
  RESULTS
  There were twelve identified themes with two overarching themes of 1) taking action and 2) caring for oneself and family. Taking action was focused on achieving what was best for the child with PWS. Caring for oneself and family attempted to assure that all in the family were healthy, content, and living a fulfilling life under their circumstances.
  
  
  CONCLUSIONS
  This study revealed parental insight as to how they learned to creatively cope with a stressful family life. There was a recognition of inevitable sacrifice and the need for changes in expectations so as to help the child with PWS flourish while also focusing on the needs of all the members of the family.
  
  
  CONCLUSIONS
  Nursing and health care providers should be aware of these issues in the provision of anticipatory guidance to families contending with this genetic disorder.
authors.affiliation: Molloy College, Rockville Centre, NY. Electronic address: svitale@molloy.edu.
authors.forename: Susan Ann
authors.initials: SA
authors.lastname: Vitale
mesh_terms: D000328:Adult; D002648:Child; D002675:Child, Preschool; D005195:Family Relations / Q000523:psychology; D005260:Female; D020022:Genetic Predisposition to Disease / Q000453:epidemiology*; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D015399:Nursing Research; D010290:Parents / Q000193:education* / Q000523:psychology; D063766:Pediatric Obesity / Q000235:genetics*; D011218:Prader-Willi Syndrome / Q000175:diagnosis* / Q000451:nursing* / Q000523:psychology; D036301:Qualitative Research; D011788:Quality of Life; D035583:Rare Diseases; D055815:Young Adult
keywords: Childhood obesity; Family functioning; Prader–Willi syndrome; Qualitative nursing research; genetics