Growing up with a facial hemangioma: parent and child coping and adaptation.

OBJECTIVE: To better understand the experiences, challenges, and adaptations of parents with children who have disfiguring facial hemangiomas.

DESIGN: Qualitative, descriptive.

METHODS: In-depth interviews were performed with the parent(s) of 25 children, aged 5 months to 8 years. Each child was referred to the Pediatric Dermatology Practice, Department of Dermatology, University of California, San Francisco, with a facial hemangioma of 1 cm diameter or greater. Interviews were ethnographic in style, centering on the description by parents of the particular challenges faced, supports received, and adaptive strategies developed in coping with their child's hemangioma. Analysis was by open coding of interview transcripts. Coded statements were organized within common categories and these further gathered into 4 principal themes: 1) parental emotion and adaptation; 2) experiences with public reactions; 3) issues related to parent-child interactions; and 4) expressed satisfaction/dissatisfaction with medical care.

RESULTS: Disfiguring facial hemangiomas were found to be associated with parental reactions of disbelief, fear, and mourning, particularly during the growth phase. Reactions of strangers forced parents to confront varied aspects of social stigmatization. A broad array of effects on the parent-child interaction were observed, often connected with variables extrinsic to the hemangioma, including especially the support and acceptance by the extended family. Half of those studied expressed substantial dissatisfaction with aspects of their medical care.

CONCLUSIONS: Disfiguring facial hemangiomas in young children are frequently associated with parental reactions of loss and grief, despite the generally benign nature of the lesion and the prognosis for eventual involution. Physicians are faced with specific challenges in providing effective anticipatory guidance and support to parents.