April 7-9, 2022 • Hyatt Regency • Lexington, KY
Communication Strategies to Promote Comprehensive Well-being
Communication Strategies to Promote Comprehensive Well-being
Abstract: Caring for Children with Rare Illnesses: Parents’ Advice to Other Parents and Clinicians
Background: Parents of children with complex chronic conditions (CCCs) often seek support from other parents of children with CCCs. This network support can help parents cope with stress, manage uncertainty, and navigate care. Previous research has traditionally examined types of support needed by parents of children with CCCs, but only recently have scholars started examining the advice parents give to other parents. Specifically, little is known about advice messages in the context of the diagnosis of rare conditions, like vascular anomalies (VAs). Children with rare VAs often receive inaccurate or delayed diagnoses. Therefore, parents facing a potentially lengthy and complicated diagnosis journey may benefit from advice from parents who have successfully navigated the diagnosis process. Parents of children with rare conditions also report many challenges communicating with clinicians, especially those unfamiliar with their child’s symptoms. Therefore, we aimed to extend the advice-giving research by exploring parents’ advice to clinicians. This research can further strategies for improving family-centered care in the context of VAs. Methods: In the current study, we examined the content of parents’ advice messages to a) parents of children with VAs and b) clinicians who care for children with VAs. Data were collected using semi-structured interviews with 24 parents of children with VAs recruited through patient advocacy groups (21 women; 3 men; Mage = 41.4 years). We are currently analyzing the interview transcripts using thematic analysis. Results: In our preliminary analysis, we found parents’ advice to other parents centered around advocating for care, addressing emotional well-being, finding social support, fostering resiliency, and involving the child in care. Advice was both problem-focused (i.e., “You’ve got to push. You’ve got to ask for that second opinion;” “Keep finding those specialists who are actually gonna listen and who are gonna care.”) and emotion-focused (i.e., “Join and find your community—that makes a big difference emotionally;” “I think it's important to have a positive outlook for their sake. Even if you don't always feel positive. You don't always feel happy, but just don't let your child know that.”). Parents’ advice to clinicians centered around acknowledging limitations, attending to mental and emotional health needs, avoiding invalidation and dismissal, demonstrating competence and commitment to learning, showing care and concern, and showing commitment to care of patients with rare diseases and their families. While advice to clinicians was primarily problem-focused (i.e., “If you don’t know the answer, find somebody who does.”), parents also provided emotion-focused advice (i.e., I think it's important for doctors to always be caring and nice to the caregivers as well as their own patients.”). Conclusion: The results reveal many challenges associated with caring for a child with a rare condition. Parents’ advice to other parents demonstrated the communication work parents must engage in to advocate for care and manage social and emotional needs. Parents’ advice to clinicians revealed the genuine investment they want from the clinicians who care for rare VAs. As a form of network support, this advice can help other parents be better prepared to navigate the diagnosis process.