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.
AçikgözYBeletNYalinTIncesuLKüçüködükŞ. Apert sendromu: olgu sunumu ve literatürün gözden geçirilmesi. Ondokuz Mayis Univ Tip Derg. 2006;23(2):59–64.
2.
BoztepeHÇınarSÖzgürF. Parenting stress in Turkish mothers of infants with cleft lip and/or palate. Cleft Palate Craniofac J. 2020;57(6):753–761. doi:10.1177/1055665619898592
3.
BradburyE. Meeting the psychological needs of patients with facial disfigurement. Br J Oral Maxillofac Surg. 2012;50(2012):193–196. doi:10.1016/j.bjoms.2010.11.022
4.
BraunVClarkeV. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101. doi:10.1191/1478088706qp063oa
5.
ClarkeVBraunV. Teaching thematic analysis: over-coming challenges and developing strategies for effective learning. Psychologist. 2013;26(2):120–123. doi:10.1191/1478088706qp063oa
6.
EdwardsTCTopolskiTDKapp-SimonKAAspinallCLPatrickDL. What difference can a minute make? Social skills and first impressions of youth with craniofacial differences. Cleft Palate-Craniofacial J. 2011;48(1):91–97. doi:10.1597/08-204
7.
EganKHarcourtDRumseyN, et al.A qualitative study of the experiences of people who identify themselves as having adjusted positively to a visible difference. J Health Psychol. 2011;16(5):739–749. doi:10.1177/1359105310390246
8.
FeragenKStockN. Psychological adjustment to craniofacial conditions (excluding oral clefts): a review of the literature. Psychol Health. 2017;32(3):253–288.
9.
FonsecaANazaréBCanavarroMC. Parenting an infant with a congenital anomaly: how are perceived burden and perceived personal benefits related to parenting stress?J Clin Psychol Med Settings. 2015;22:64–76. doi:10.1007/s10880-015-9418-7
10.
GaskinEPerssonMWilliamsonH. Optimising appearance-related psychosocial care in European settings. J Aesthetic Nurs. 2015;4(8):304–306. doi:10.12968/joan.2015.4.8.394
11.
HiltonC.An exploration of the cognitive, physical and psychosocial development of children with Apert syndrome. Int J Disabil Dev Educ. 2017;64(2):198–210. doi:10.1080/1034912X.2016.1194379
12.
JewettLRGumuchianSTPepinMRiceDBKolorzFHarrisonPThombsBD. Factors associated with negative observer responses towards individuals with visible differences: a scoping review. Body Image. 2018;25:103–132. doi:10.1016/j.bodyim.2018.02.007
13.
KishVLansdownR. Meeting the psychosocial impact of facial disfigurement: developing a clinical service for children and families. Clin Child Psychol Psychiatry. 2000;5(4):497–512. doi:10.1177/1359104500005004005
14.
KleinTPopeAWGetahunEThompsonJ. Mothers’ reflections on raising a child with a craniofacial anomaly. Cleft Palate-Craniofacial J. 2006;43(5):590–597. doi:10.1597/05-117
15.
KleinTPPopeAWTanE. Fathers’ perspectives on parenting a child with a craniofacial anomaly. J Pediatr Heal Care. 2010;24(5):300–304. doi:10.1016/j.pedhc.2009.08.00
16.
MacgregorFC. Facial disfigurement: problems and management of social interaction and implications for mental health. Aesthetic Plast Surg. 1990;14(4):249–257.
17.
MaliepaardMMathijssenIMJOosterlaanJOkkerseJME. Intellectual, behavioral, and emotional functioning in children with syndromic craniosynostosis. Pediatrics. 2014;133(6):e1608–e1615. doi:10.1542/peds.2013-3077
18.
NelsonP. Qualitative approaches in craniofacial research. Cleft Palate-Craniofacial J. 2009;46(3):245–251. https://doi.org/10.1597/08-121.1
19.
PopeAWWardJ. Factors associated with peer social competence in preadolescents with craniofacial anomalies. J Pediatr Psychol. 1997;22(4):249–257. doi:10.1093/jpepsy/22.4.455
20.
RenierDArnaudECinalliGSebagGZerahMMarchacD. Prognosis for mental function in Apert’s syndrome. J Neurosurg. 1996;85(1):66–72. doi:10.3171/jns.1996.85.1.0066
21.
RobertsRMMathiasJL. Psychosocial functioning in adults with congenital craniofacial conditions. Cleft Palate-Craniofacial J. 2012;49(3):276–285. doi:10.1597/10-143
22.
RobertsRMShuteR. Children’s experience of living with a craniofacial condition: perspectives of children and parents. Clin Child Psychol Psychiatry. 2011;16(3):317–334. doi:10.1177/1359104509355021
23.
RothSCohenLJ. Approach, avoidance, and coping with stress. Am Psychol. 1986;41(7):813–819. doi:10.1037/0003-066X.41.7.813
24.
RumseyNHarcourtD. Body image and disfigurement: issues and interventions. Body Image. 2004;1(1):83–97. doi:10.1016/S1740-1445(03)00005-6
25.
SarimskiK.Children with Apert syndrome: behavioural problems and family stress. Dev Med Child Neurol. 2008;40(1):44–99. doi:10.1111/j.1469-8749.1998.tb15355.x
26.
SarimskiK. Social adjustment of children with a severe craniofacial anomaly (Apert syndrome). Child Care Health Dev. 2001;27(6):583–590. doi:10.1046/j.1365-2214.2001.00224.x
27.
StockNMFeragenKBRumseyN. Adults’ narratives of growing up with a cleft lip and/or palate: factors associated with psychological adjustment. Cleft Palate-Craniofacial J. 2016;53(2):222–239. doi:10.1597/14-269
28.
StockNMFeragenKB. Assessing psychological adjustment to congenital craniofacial anomalies: an illustration of methodological challenges. Cleft Palate-Craniofacial J. 2019b;56(1):64–73. doi:10.1177/1055665618769661
29.
StockNMFeragenKB. Comparing psychological adjustment across cleft and other craniofacial conditions: implications for outcome measurement and intervention. Cleft Palate-Craniofacial J. 2019a;56(6):766–772. doi:10.1177/1055665618770183
30.
StockNMFeragenKB. Psychological adjustment to cleft lip and/or palate: a narrative review of the literature. Psychol Heal. 2016;31(7):777–813. doi:10.1080/08870446.2016.1143944
31.
StraussRP. “Only skin deep”: health, resilience, and craniofacial care. Cleft Palate-Craniofacial J. 2001;38(3):226–230. doi:10.1597/1545-1569(2001)038<0226: OSDHRA>2.0.CO;2
32.
ZevtinoğluSDaveyMCrerandCFisherKAkyilY. Experiences of couples caring for a child born with cleft lip and/or palate: impact of the timing of diagnosis. Marital Fam Ther. 2017;43:82–99. doi:10.1111/jmft.12182
