Title

A Case Study of Family Functioning With Prader-Willi Syndrome: A Rare Genetic Cause of Childhood Obesity

Location

3031

Format Type

Paper

Format Type

Paper

Start Date

January 2016

End Date

January 2016

Abstract

A Case Study of Family Functioning With Prader-Willi Syndrome:

A Rare Genetic Cause of Childhood Obesity

Purpose: The purpose of this study was to gain an understanding of how families function when they have a child with Prader-Willi Syndrome (PWS).

Background: PWS is a rare genetic disorder without a cure. Neonates have hypotonia, and poor sucking ability. They may be misunderstood as failure-to-thrive. An unusual change occurs when the child is a few years older. Insatiable hunger (hyperphagia) and maladaptive behaviors develop with the potential for excessive weight gain. There may be dysmorphic facial features and developmental delays. A survey of literature reveals limited research family experiences.

Methods: A qualitative design of case study methodology, provided a clear focus on an in-depth understanding of specific family action. Interviews were conducted with parents (N= 20). Data were collected and analyzed simultaneously using constant comparative method. Themes and commonalties were identified.

Results: Creative coping with stressful family life issues were revealed. Recommendations were provided concerning family preservation while focusing on the child with PWS. Common adjustments included recognition of inevitable sacrifice and changes in expectations. Remaining an intact family guided a day-by-day approach. Dedicating themselves to the child and “doing whatever it takes” guided their actions so as to help the child reach the highest potential.

Conclusions: Findings from this research will help inform nursing and health care providers and lead to family anticipatory guidance.

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Jan 16th, 3:15 PM Jan 16th, 3:35 PM

A Case Study of Family Functioning With Prader-Willi Syndrome: A Rare Genetic Cause of Childhood Obesity

3031

A Case Study of Family Functioning With Prader-Willi Syndrome:

A Rare Genetic Cause of Childhood Obesity

Purpose: The purpose of this study was to gain an understanding of how families function when they have a child with Prader-Willi Syndrome (PWS).

Background: PWS is a rare genetic disorder without a cure. Neonates have hypotonia, and poor sucking ability. They may be misunderstood as failure-to-thrive. An unusual change occurs when the child is a few years older. Insatiable hunger (hyperphagia) and maladaptive behaviors develop with the potential for excessive weight gain. There may be dysmorphic facial features and developmental delays. A survey of literature reveals limited research family experiences.

Methods: A qualitative design of case study methodology, provided a clear focus on an in-depth understanding of specific family action. Interviews were conducted with parents (N= 20). Data were collected and analyzed simultaneously using constant comparative method. Themes and commonalties were identified.

Results: Creative coping with stressful family life issues were revealed. Recommendations were provided concerning family preservation while focusing on the child with PWS. Common adjustments included recognition of inevitable sacrifice and changes in expectations. Remaining an intact family guided a day-by-day approach. Dedicating themselves to the child and “doing whatever it takes” guided their actions so as to help the child reach the highest potential.

Conclusions: Findings from this research will help inform nursing and health care providers and lead to family anticipatory guidance.