Megha M Tollefson1, Dawn M Finnie2, Jennifer J Schoch3, David T Eton2. 1. Department of Dermatology and Pediatrics, Mayo Clinic, Rochester, Minnesota. Electronic address: tollefson.megha@mayo.edu. 2. Department of Health Sciences Research, Mayo Clinic, Rochester, Minnesota. 3. Division of Clinical Dermatology, Mayo Clinic, Rochester, Minnesota.
Abstract
BACKGROUND: Childhood diseases, such as atopic dermatitis, have a negative impact on quality of life (QoL) of parents. How pediatric psoriasis affects a parent's QoL is unknown. OBJECTIVE: To explore the impact of childhood psoriasis on the lives of the parents. METHODS: Semistructured interviews were conducted with 31 parents of children with psoriasis. Narrative data were analyzed and a conceptual framework of the effects of childhood psoriasis on parents was developed. RESULTS: All parents reported that their child's psoriasis caused a substantial, negative impact on their own QoL. A conceptual framework showed a negative impact on health and self-care, emotional well-being, family and social function, personal well-being, and life pursuits. Emotional well-being was the most affected domain. LIMITATIONS: It was not possible to correlate psoriasis severity with parental QoL. CONCLUSION: Childhood psoriasis alters the QoL of parents in multiple ways. Information from this study can be used to develop a QoL instrument to explore treatment and support strategies for families affected by pediatric psoriasis.
BACKGROUND: Childhood diseases, such as atopic dermatitis, have a negative impact on quality of life (QoL) of parents. How pediatric psoriasis affects a parent's QoL is unknown. OBJECTIVE: To explore the impact of childhood psoriasis on the lives of the parents. METHODS: Semistructured interviews were conducted with 31 parents of children with psoriasis. Narrative data were analyzed and a conceptual framework of the effects of childhood psoriasis on parents was developed. RESULTS: All parents reported that their child's psoriasis caused a substantial, negative impact on their own QoL. A conceptual framework showed a negative impact on health and self-care, emotional well-being, family and social function, personal well-being, and life pursuits. Emotional well-being was the most affected domain. LIMITATIONS: It was not possible to correlate psoriasis severity with parental QoL. CONCLUSION: Childhood psoriasis alters the QoL of parents in multiple ways. Information from this study can be used to develop a QoL instrument to explore treatment and support strategies for families affected by pediatric psoriasis.
Authors: Staci Martin; Kari L Struemph; Alyssa Poblete; Mary Anne Toledo-Tamula; Robin Lockridge; Marie Claire Roderick; Pamela Wolters Journal: J Community Genet Date: 2018-03-02