(308) Bright Beginnings: Early intervention for parents of newly diagnosed infants

Background: A CF diagnosis is life-changing at any age. It can be especially daunting when it occurs unexpectedly after birth when parents may feel overwhelmed and sleep-deprived and may struggle with postpartum depressive symptoms, which can be exacerbated by the diagnosis. Some parents describe the first year as “trying to figure things out on our own”, sometimes turning to inaccurate information sources. Bright Beginnings was designed to be an online space where parents of newly diagnosed infants can find evidence-based information, build community, empower themselves with tools to live full and gratifying lives, and feel hopeful about their children’s futures. This online program included access to information and community engagement. Eight modules were designed to help parents: reflect on their experiences of their child’s birth and diagnosis, develop self-care/coping skills, strengthen family relationships, increase confidence in communicating with their health care team and support their infants’ needs. Parents engaged in online discussions with other parents, exchanged thoughts/feelings, challenges, and solutions. A parent of children with CF and a pediatric nurse educator co-facilitated online group discussions. Parents attended free of charge.

Methods: To evaluate the feasibility and acceptability of this on-line program, we pilot tested it with six mothers of infants < 12 months and eight parents (6 mothers and 2 fathers) of children between 3 and 10 years—all infants and children a confirmed CF diagnosis from CF Centers across the US. Each parent participated in up to 8 weekly on-line modules. Parents of infants < 12 months completed pre-post assessments of depression, anxiety, family resilience and communication as well as evaluations of the overall program. Parents of older children simply evaluated the content of each module. The project was IRB approved.

Results: Assessment of acceptability revealed that 100% of parents would recommend this program to others. Potential benefits included decreased depression and anxiety post-intervention reported by parents of infant. Qualitatively, these parents reported benefits from peer support, coping (self-care), using familial and community support, and developmental tips for increasing their child’s cooperation with treatment. No benefits were noted in family resilience or communication. One parent stated, “It [Bright Beginnings] is almost like a ‘Welcome to CF’ group. It gives you a chance to learn and understand what your children are facing on a daily basis, and it gives you a chance to speak with people who know exactly what you are going though. It takes away your fear of loneliness and your fear of the unknown. It truly allows you to open the door to CF and to walk through without being terrified of what you may encounter. I have done many different groups and Bright Beginnings by far has been my favorite and by far the most helpful.” Parents of older children found content highly relevant to parents of newly diagnosed infants. The most common comment among these parents was, “I wish this program had been available when my child was diagnosed.”

Conclusions: Bright Beginnings holds promise as a valuable resource to supplement the support offered by CF Centers to families with an infant newly diagnosed with CF.

Acknowledgements: This work was supported by a grant from the CF Foundation [TLUCZE17QI0]

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