Scandcleft randomised trials of primary surgery for unilateral cleft lip and Palate: 9. Parental report of social and emotional experiences related to their 5-year-old child's cleft diagnosis

References

• Semb G, Enemark H, Friede H, et al. A Scandcleft randomised trials of primary surgery for unilateral cleft lip and palate: 1. Planning and management. J Plastic Surgery and Hand Surgery 2017;51:1–12.
   PubMed Web of Science ®Google Scholar
• Nelson P, Glenny AM, Kirk S, Caress AL. Parents' experiences of caring for a child with a cleft lip and/or palate: a review of the literature. Child Care Health Dev 2012;38:6–20.
   PubMed Web of Science ®Google Scholar
• Zeytinoglu S, Davey MP. It's a privilege to smile: impact of cleft lip palate on families. Fam Syst Health 2012;30:265–77.
   PubMed Web of Science ®Google Scholar
• Black JD, Girotto JA, Chapman KE, Oppenheimer AJ. When my child was born: cross-cultural reactions to the birth of a child with cleft lip and/or palate. Cleft Palate Craniofac J 2009;46:545–8.
   PubMed Web of Science ®Google Scholar
• Leemreis WH, Okkerse JM, de Laat PC, et al. Educational paper: parenting a child with a disfiguring condition-how (well) do parents adapt? Eur J Pediatr 2014;173:699–709.
   PubMed Web of Science ®Google Scholar
• Strauss RP, Sharp MC, Lorch SC, Kachalia B. Physicians and the communication of bad news: parent experiences of being informed of their child's cleft lip and/or palate. Pediatrics 1995;96:82–9.
   PubMed Web of Science ®Google Scholar
• Baker SR, Owens J, Stern M, Willmot D. Coping strategies and social support in the family impact of cleft lip and palate and parents' adjustment and psychological distress. Cleft Palate Craniofac J 2009;46:229–36.
   PubMed Web of Science ®Google Scholar
• Nelson PA, Kirk SA, Caress AL, Glenny AM. Parents' emotional and social experiences of caring for a child through cleft treatment. Qual Health Res 2012;22:346–59.
   PubMed Web of Science ®Google Scholar
• Turner SR, Thomas PWN, Dowell T, et al. Psychological outcomes amongst cleft patients and their families. Br J Plast Surg 1997;50:1–9.
   PubMedGoogle Scholar
• Semb G, Brattström V, Mølsted K, et al. The Eurocleft study: intercenter study of treatment outcome in patients with complete cleft lip and palate. Part 4: relationship among treatment outcome, patient/parent satisfaction, and the burden of care. Cleft Palate Craniofac J 2005;42:83–92.
   PubMed Web of Science ®Google Scholar
• Williams AC, Bearn D, Clark JD, et al. The delivery of surgical cleft care in the United Kingdom. J R Coll Surg Edinb 2001;46:143–9.
   PubMedGoogle Scholar
• Munz SM, Edwards SP, Inglehart MR. Oral health-related quality of life, and satisfaction with treatment and treatment outcomes of adolescents/young adults with cleft lip/palate: an exploration. Int J Oral Maxillofac Surg 2011;40:790–6.
   PubMed Web of Science ®Google Scholar
• Donabedian A. Evaluating the quality of medical care. 1966. Milbank Q 2005;83:691–729.
   PubMed Web of Science ®Google Scholar
• Stone MB, Botto LD, Feldkamp ML, et al. Improving quality of life of children with oral clefts: perspectives of parents. J Craniofac Surg 2010;21:1358–64.
   PubMed Web of Science ®Google Scholar
• Stock NM, Rumsey N. Parenting a child with a cleft: the father's perspective. Cleft Palate Craniofac J 2015;52:31–43.
   PubMed Web of Science ®Google Scholar
• Sank JR, Berk NW, Cooper ME, Marazita ML. Perceived social support of mothers of children with clefts. Cleft Palate Craniofac J 2003;40:165–71.
   PubMed Web of Science ®Google Scholar
• O'Hanlon K, Camic PM, Shearer J. Factors associated with parental adaptation to having a child with a cleft lip and/or palate: the impact of parental diagnosis. Cleft Palate Craniofac J 2012;49:718–29.
   PubMed Web of Science ®Google Scholar
• Johansson B, Ringsberg KC. Parents' experiences of having a child with cleft lip and palate. J Adv Nurs 2004;47:165–73.
   PubMed Web of Science ®Google Scholar
• Nelson PA, Kirk SA. Parents' perspectives of cleft lip and/or palate services: a qualitative interview. Cleft Palate Craniofac J 2013;50:275–85.
   PubMed Web of Science ®Google Scholar
• Waylen A, Ness AR, Wills AK, et al. Cleft care UK study. Part 5: child psychosocial outcomes and satisfaction with cleft services. Orthod Craniofac Res 2015;18:47–55.
   PubMed Web of Science ®Google Scholar
• Noor SN, Musa S. Assessment of patients' level of satisfaction with cleft treatment using the Cleft Evaluation Profile. Cleft Palate Craniofac J 2007;44:292–303.
   PubMed Web of Science ®Google Scholar
• Hunt O, Burden D, Hepper P, et al. Self-reports of psychosocial functioning among children and young adults with cleft lip and palate. Cleft Palate Craniofac J 2006;43:598–605.
   PubMed Web of Science ®Google Scholar
• Hunt O, Burden D, Hepper P, et al. Parent reports of the psychosocial functioning of children with cleft lip and/or palate. Cleft Palate Craniofac J 2007;44:304–11.
   PubMed Web of Science ®Google Scholar
• Feragen KB, Stock NM. A longitudinal study of 340 young people with or without a visible difference: the impact of teasing on self-perceptions of appearance and depressive symptoms. Body Image 2016;16:133–42.
   PubMed Web of Science ®Google Scholar
• Feragen KJB, Borge AIH, Rumsey N. Social experience in 10-year-old children born with a cleft: exploring psychosocial resilience. Cleft Palate Craniofac J 2009;46:65–74.
   PubMed Web of Science ®Google Scholar
• Van Lierde KM, Dhaeseleer E, Luyten A, et al. Parent and child ratings of satisfaction with speech and facial appearance in Flemish pre-pubescent boys and girls with unilateral cleft lip and palate. Int J Oral Maxillofac Surg 2012;41:192–9.
   PubMed Web of Science ®Google Scholar
• Moss TP. The relationships between objective and subjective ratings of disfigurement severity, and psychological adjustment. Body Image 2005;2:151–59.
   PubMedGoogle Scholar
• Stock NM, Feragen KB, Rumsey N. ‘‘It Doesn't All Just Stop at 18”: psychological adjustment and support needs of adults born with cleft lip and/or palate. Cleft Palate Craniofac J 2015;52:543–54.
   PubMed Web of Science ®Google Scholar