Nicola Marie Stock1, Kristin Billaud Feragen2. 1. a Centre for Appearance Research , University of the West of England , Bristol , UK. 2. b Senter for sjeldne diagnoser (Centre for Rare Disorders) , Oslo Universitetssykehus HF , Oslo , Norway.
Abstract
OBJECTIVE: Adjustment to cleft lip and/or palate (CL/P) is multifaceted, involving several domains of psychological and social functioning. A substantial increase in research in this area has been evident in recent years, along with a preliminary shift in how adjustment to CL/P is conceptualised and measured. An updated and comprehensive review of the literature is needed in light of the rapidly expanding and changing field. DESIGN: A narrative review of 148 quantitative and qualitative studies published between January 2004 and July 2015. MAIN OUTCOME MEASURES: Findings are presented according to five key domains of adjustment: Developmental Trajectory, Behaviour, Emotional Well-being, Social Experiences and Satisfaction with Appearance and Treatment. Data pertaining to General Psychological Well-being were also examined. RESULTS: The overall impact of CL/P on psychological adjustment appears to be low. Nonetheless, the review demonstrates the complexity of findings both within and across domains, and highlights recurring methodological challenges. CONCLUSIONS: Research findings from the last decade are considered to be largely inconclusive, although some areas of emerging consensus and improvements in the approaches used were identified. Efforts to collect data from large, representative and longitudinal samples, which are comparable across studies and encompassing of the patient perspective, should be doubled.
OBJECTIVE: Adjustment to cleft lip and/or palate (CL/P) is multifaceted, involving several domains of psychological and social functioning. A substantial increase in research in this area has been evident in recent years, along with a preliminary shift in how adjustment to CL/P is conceptualised and measured. An updated and comprehensive review of the literature is needed in light of the rapidly expanding and changing field. DESIGN: A narrative review of 148 quantitative and qualitative studies published between January 2004 and July 2015. MAIN OUTCOME MEASURES: Findings are presented according to five key domains of adjustment: Developmental Trajectory, Behaviour, Emotional Well-being, Social Experiences and Satisfaction with Appearance and Treatment. Data pertaining to General Psychological Well-being were also examined. RESULTS: The overall impact of CL/P on psychological adjustment appears to be low. Nonetheless, the review demonstrates the complexity of findings both within and across domains, and highlights recurring methodological challenges. CONCLUSIONS: Research findings from the last decade are considered to be largely inconclusive, although some areas of emerging consensus and improvements in the approaches used were identified. Efforts to collect data from large, representative and longitudinal samples, which are comparable across studies and encompassing of the patient perspective, should be doubled.
Entities:
Keywords:
behaviour; cleft lip and palate; development; emotional; quality of life; social; treatment
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