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Parent Recommendations for Family Functioning With Prader-Willi Syndrome: A Rare Genetic Cause of Childhood Obesity
1Molloy College, Rockville Centre, NY.
Insights
Families with Prader-Willi syndrome (PWS) creatively cope with challenges by prioritizing their child's needs and ensuring overall family well-being. This involves adapting expectations and seeking balance for a fulfilling life despite the genetic disorder.
Area of Science:
- Genetics
- Pediatrics
- Psychology
Background:
- Prader-Willi syndrome (PWS) is a genetic disorder leading to childhood obesity, hypotonia, developmental issues, and hyperphagia.
- PWS presents significant challenges for affected children and their families, impacting daily functioning and well-being.
Purpose of the Study:
- To explore the functional dynamics of families raising a child with Prader-Willi syndrome.
- To identify parental coping strategies and recommendations for managing PWS within the family unit.
Main Methods:
- A qualitative descriptive study design was employed.
- Face-to-face, audio-taped interviews were conducted with 20 parents of children with PWS.
- Interview data were transcribed, coded, and analyzed to identify common themes.
Main Results:
- Twelve distinct themes emerged, categorized under two overarching themes: 'taking action' and 'caring for oneself and family'.
- 'Taking action' focused on advocating for the child's best interests.
- 'Caring for oneself and family' emphasized maintaining overall family health and contentment.
Conclusions:
- Parents develop creative coping mechanisms to navigate the complexities of family life with PWS.
- Successful adaptation involves adjusting expectations and prioritizing the needs of all family members to foster flourishing.
- Healthcare providers should offer anticipatory guidance to families managing PWS.
Unlabelled:
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.
Design And 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.
Practice Implications:
Nursing and health care providers should be aware of these issues in the provision of anticipatory guidance to families contending with this genetic disorder.
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