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All in the Family: Living With ADNP Syndrome.
Paula C Fletcher1, Stephanie Pollock, Nicole Luymes
1Author Affiliations: Professor (Fletcher and Bryden); Former UG Student (Pollock and Luymes); Department of Kinesiology and Physical Education, Wilfrid Laurier University, Waterloo, Ontario, Canada.
Caring for a child with Helsmoortel-Van Der Aa syndrome (also known as activity-dependent neuroprotective protein syndrome) profoundly impacts family life, necessitating greater support systems for these families.
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Area of Science:
- Genetics and rare diseases
- Pediatric care
- Family studies
Background:
- Helsmoortel-Van Der Aa syndrome (ADNP syndrome) is a rare genetic disorder.
- Limited research exists on the lived experiences of families managing ADNP syndrome.
Purpose of the Study:
- To explore the experiences of one family with a child diagnosed with ADNP syndrome.
- To understand the impact of ADNP syndrome on family dynamics and daily life.
Main Methods:
- Retrospective qualitative research design.
- Semistructured interviews with two primary caregivers.
- Data credibility enhanced through field notes, member checks, and triangulation.
Main Results:
- The family's experience, themed "All in the Family," affected all life aspects.
- Family dynamics were significantly shaped by caregiving responsibilities and living arrangements.
- Caregivers shared insights into the challenges of managing ADNP syndrome.
Conclusions:
- Increased support is crucial for families affected by ADNP syndrome.
- Clinical nurse specialists can play a vital role in supporting caregivers.
- Further research is essential due to the scarcity of information on ADNP syndrome.