Claire E Hailey1, J Winfield Tan2, Elisabeth P Dellon3, Eliza M Park1,2. 1. Department of Medicine, University of North Carolina, Chapel Hill, North Carolina. 2. Department of Psychiatry, University of North Carolina, Chapel Hill, North Carolina. 3. Department of Pediatrics, University of North Carolina, Chapel Hill, North Carolina.
Abstract
BACKGROUND: As life expectancy for cystic fibrosis (CF) has increased in recent decades, more individuals with CF are becoming parents. The objectives of this study were to describe the parenting and reproductive health concerns of individuals with CF and to identify the psychosocial and educational needs related to parenthood with CF. METHODS: Twenty adults with CF, including parents and non-parents, participated in one-on-one, semi-structured interviews about reproductive health and parenting. Questions pertained to reproductive health knowledge, psychosocial adaptation to CF related to fertility and parenthood, parenting concerns in the context of CF, and psychosocial care needs. We performed thematic content analysis on interview transcripts and descriptive statistical analysis on participant demographics and health variables. RESULTS: A majority of participants (ten women and ten men, of whom half were parents) described their health as "stable" and "good/fair"; median FEV 1 was 66% predicted (range, 30-105). Participants shared a range of experiences related to reproductive health discussions with CF care providers and expressed concerns about pregnancy, infertility, and adoption. Parents and non-parents expressed concerns about balancing roles as parent and patient, the impact of anticipated health decline and early mortality on children, and communication with children. Participants identified a need for earlier, improved education for potential parents and resources for parents with CF. CONCLUSIONS: Individuals with CF may not receive sufficient CF-related reproductive health education, and they have wide-ranging concerns about the intersecting roles of patient and parent. Results from this study can provide guidance for CF care providers to improve their understanding and response to the needs of individuals and families affected by CF.
BACKGROUND: As life expectancy for cystic fibrosis (CF) has increased in recent decades, more individuals with CF are becoming parents. The objectives of this study were to describe the parenting and reproductive health concerns of individuals with CF and to identify the psychosocial and educational needs related to parenthood with CF. METHODS: Twenty adults with CF, including parents and non-parents, participated in one-on-one, semi-structured interviews about reproductive health and parenting. Questions pertained to reproductive health knowledge, psychosocial adaptation to CF related to fertility and parenthood, parenting concerns in the context of CF, and psychosocial care needs. We performed thematic content analysis on interview transcripts and descriptive statistical analysis on participant demographics and health variables. RESULTS: A majority of participants (ten women and ten men, of whom half were parents) described their health as "stable" and "good/fair"; median FEV 1 was 66% predicted (range, 30-105). Participants shared a range of experiences related to reproductive health discussions with CF care providers and expressed concerns about pregnancy, infertility, and adoption. Parents and non-parents expressed concerns about balancing roles as parent and patient, the impact of anticipated health decline and early mortality on children, and communication with children. Participants identified a need for earlier, improved education for potential parents and resources for parents with CF. CONCLUSIONS: Individuals with CF may not receive sufficient CF-related reproductive health education, and they have wide-ranging concerns about the intersecting roles of patient and parent. Results from this study can provide guidance for CF care providers to improve their understanding and response to the needs of individuals and families affected by CF.
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