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Social Experiences of Turkish Parents Raising a Child With Apert Syndrome: A Qualitative Study
Senem Zeytinoğlu Saydam1, Darina Çüçülayef2, Tuğçe Nur Doğan2
1Department of Psychology, 155531Ozyegin University, İstanbul, Turkey.
Insights
Parents raising children with Apert syndrome face social challenges and stigma. They cope using strategies like religion and spousal support to promote their child's well-being and resilience.
Area of Science:
- Pediatric Psychology
- Craniofacial Anomalies
- Social Sciences
Background:
- Apert syndrome is a rare craniofacial condition with significant psychosocial impact.
- Limited research exists on the social experiences of children and families affected by Apert syndrome.
- Interventions for well-being and positive adjustment are hindered by this knowledge gap.
Purpose of the Study:
- To assess the unique social experiences of parents raising children with Apert syndrome.
- To identify the difficulties faced by these parents.
- To explore coping strategies employed by parents to manage challenges.
Main Methods:
- A descriptive qualitative study design was utilized.
- Thematic analysis was applied to qualitative data.
- Participants included 21 parents of 12 children (aged 1-12 years) with Apert syndrome.
Main Results:
- Four main themes emerged: social challenges, coping with negative reactions, promoting socialization and independence, and sources of strength.
- Parents reported experiencing social stigmatization.
- Strategies included utilizing religion and spousal support for adaptation and resilience.
Conclusions:
- Parents utilize diverse strategies to foster positive adaptation and resilience in themselves and their children.
- Findings offer clinically relevant insights into the strengths and challenges of families coping with Apert syndrome.
- This study addresses a critical gap in understanding the psychosocial aspects of Apert syndrome.
Objective:
Apert syndrome is a rare and understudied craniofacial condition with regard to its psychosocial impact on children and their parents. Due to the lack of studies focusing solely on the social experiences of children and families with Apert syndrome, it is difficult to develop interventions and strategies to support well-being and positive adjustment for this particular population. This study addressed this gap by assessing the unique social experiences of parents who are raising their children with Apert syndrome including difficulties they face and strategies they use to cope with challenges.
Design:
Descriptive qualitative study using thematic analysis.
Participants:
Participants included 21 parents of 12 children (aged 1-12 years) with Apert syndrome (9 couples, 2 fathers, and 1 mother) who were recruited from a pediatric neurosurgery unit in Turkey.
Results:
The qualitative analysis yielded four main themes describing the experiences of parents including (1) social challenges; (2) coping with negative reactions; (3) promoting socialization and independence; and (4) sources of strength.
Conclusions:
Parents reported several challenges, including social stigmatization, and utilized a range of strategies to support both their own and their child's positive adaptation and resiliency, including the use of religion and reliance on their spouses for support. Results offer clinically relevant insights about the strengths and challenges of families coping with Apert syndrome.
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