Parents’ Emotional and Social Experiences of Caring for a Child Through Cleft Treatment

• Published in: Qualitative health research Vol. 22; no. 3; pp. 346 - 359
• Main Authors: Nelson, Pauline A., Kirk, Susan A., Caress, Ann-Louise, Glenny, Anne-Marie
• Format: Journal Article
• Language: English
• Published: Los Angeles, CA SAGE Publications 01.03.2012; SAGE PUBLICATIONS, INC
• Subjects: Adaptation, Psychological; Adolescence; Adolescent; Adult; Body Image; Caring; Child; Child Welfare - psychology; Child, Preschool; Children; Childrens health; Cleft Palate - psychology; Deformities; Disabled Children; Emotions; Empathy; Female; Health technology assessment; Humans; Infant; Interview, Psychological; Male; Medical treatment; Middle Aged; Parent-Child Relations; Parents; Parents & parenting; Parents - psychology; Qualitative Research; Social Perception; Social Support; Stress, Psychological; Treatment methods; Young Adult; body image; psychosocial issues; children, disability; parenting; grounded theory
• ISSN: 1049-7323; 1552-7557
• DOI: 10.1177/1049732311421178

Little is known about the experiences of parents caring for a child through long-term treatment for cleft lip and/or cleft palate. We conducted in-depth interviews with 35 parents with children between the ages of 20 weeks and 21 years to explore experiences across the treatment program. We analyzed the data using a constructivist grounded theory approach and present in detail in this article one subcategory from the analysis: managing emotions. Throughout childhood and adolescence, parents experienced conflicting emotions about their child’s impairment, uncertainty about cleft treatment, and stigmatizing attitudes. Although parents attempted to manage emotional tensions by pursuing cleft treatments, the interventions could themselves be a source of conflict for them. We suggest that routine assessment of parents’ emotional and social well-being should be included in cleft treatment programs, and access to psychosocial support made available.