TY - JOUR
T1 - Dyadic coping experiences of parents of children with vascular anomalies
AU - Kerr, Anna M.
AU - Wehrli, Jacqueline
AU - Contente, Clarice
AU - Prathana, D.
AU - Sisk, Bryan A.
N1 - Publisher Copyright:
© 2024 The Author(s). Pediatric Blood & Cancer published by Wiley Periodicals LLC.
PY - 2024/11
Y1 - 2024/11
N2 - Background: Vascular anomalies (VAs) are a spectrum of rare pediatric disorders that require coordinated care from multiple subspecialists. Parents often struggle to coordinate care for their child's complex rare disorder. Even when they do access expert care, parents of children with VAs report high levels of stress and uncertainty. While previous research has explored parents’ experiences navigating care for VAs, we know very little about how parents cope with stress together. Given the effect that dyadic coping can have on individual, couple, family, and child outcomes, we aimed to gain a better understanding of dyadic coping in the context of VAs. Procedures: We collected data using semi-structured interviews with 27 parents (13 dyads and one individual parent). Data were analyzed using dyadic thematic analysis. Results: Parents experienced stress related to medical, personal, logistical, and financial aspects of their child's healthcare. They relied on eight coping strategies: active coping, seeking emotional support, seeking informational support, cognitive avoidance, distraction, cognitive reframing, acceptance, and internalization. When analyzed together, we found evidence of five dyadic coping dynamics: collaborative, supportive, delegated, separate, and negative. Conclusion: Dyadic coping is complex and multilayered for parents of children with VAs. While the child's diagnosis is considered a shared stressor, both parents may not share preferred coping strategies. Parents of the same child may also be coping with different medical, relational/social, personal, or logistical stressors altogether. Psychosocial interventions designed to facilitate parental coping should address these complex coping dynamics.
AB - Background: Vascular anomalies (VAs) are a spectrum of rare pediatric disorders that require coordinated care from multiple subspecialists. Parents often struggle to coordinate care for their child's complex rare disorder. Even when they do access expert care, parents of children with VAs report high levels of stress and uncertainty. While previous research has explored parents’ experiences navigating care for VAs, we know very little about how parents cope with stress together. Given the effect that dyadic coping can have on individual, couple, family, and child outcomes, we aimed to gain a better understanding of dyadic coping in the context of VAs. Procedures: We collected data using semi-structured interviews with 27 parents (13 dyads and one individual parent). Data were analyzed using dyadic thematic analysis. Results: Parents experienced stress related to medical, personal, logistical, and financial aspects of their child's healthcare. They relied on eight coping strategies: active coping, seeking emotional support, seeking informational support, cognitive avoidance, distraction, cognitive reframing, acceptance, and internalization. When analyzed together, we found evidence of five dyadic coping dynamics: collaborative, supportive, delegated, separate, and negative. Conclusion: Dyadic coping is complex and multilayered for parents of children with VAs. While the child's diagnosis is considered a shared stressor, both parents may not share preferred coping strategies. Parents of the same child may also be coping with different medical, relational/social, personal, or logistical stressors altogether. Psychosocial interventions designed to facilitate parental coping should address these complex coping dynamics.
KW - dyadic coping
KW - stress
KW - uncertainty
KW - vascular anomalies
UR - http://www.scopus.com/inward/record.url?scp=85201720242&partnerID=8YFLogxK
U2 - 10.1002/pbc.31261
DO - 10.1002/pbc.31261
M3 - Article
C2 - 39171558
AN - SCOPUS:85201720242
SN - 1545-5009
VL - 71
JO - Pediatric Blood and Cancer
JF - Pediatric Blood and Cancer
IS - 11
M1 - e31261
ER -