Social experiences of Turkish parents raising a child with apert syndrome: A qualitative study

Name: Social experiences of Turkish parents raising a child with apert syndrome: A qualitative study
Author: Saydam, Fehime Senem Zeytinoğlu, Çüçülayef, D., Doğan, T. N., Crerand, C. E., Özek, M.

İsim	Social experiences of Turkish parents raising a child with apert syndrome: A qualitative study
Yazar	Saydam, Fehime Senem Zeytinoğlu, Çüçülayef, D., Doğan, T. N., Crerand, C. E., Özek, M.
Basım Tarihi:	2021-02
Basım Yeri	- Sage
Konu	Apert syndrome, Craniofacial conditions, Parents, Qualitative, Resilience, Stigma
Tür	Süreli Yayın
Dil	İngilizce
Dijital	Evet
Yazma	Hayır
Kütüphane:	Özyeğin Üniversitesi
Demirbaş Numarası	1055-6656
Kayıt Numarası	5a7cc347-73d6-4579-a063-1e92822b75f7
Lokasyon	Psychology
Tarih	2021-02
Örnek Metin	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.
DOI	10.1177/1055665620944761
Cilt	58

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Social experiences of Turkish parents raising a child with apert syndrome: A qualitative study

Yazar Saydam, Fehime Senem Zeytinoğlu, Çüçülayef, D., Doğan, T. N., Crerand, C. E., Özek, M.

Basım Tarihi 2021-02

Basım Yeri - Sage

Konu Apert syndrome, Craniofacial conditions, Parents, Qualitative, Resilience, Stigma

Tür Süreli Yayın

Dil İngilizce

Dijital Evet

Yazma Hayır

Kütüphane Özyeğin Üniversitesi

Demirbaş Numarası 1055-6656

Kayıt Numarası 5a7cc347-73d6-4579-a063-1e92822b75f7

Lokasyon Psychology

Tarih 2021-02

Örnek Metin 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.

DOI 10.1177/1055665620944761

Cilt 58