Information and Emotional Support Needs of Families Whose Infant Was Diagnosed With SCID Through Newborn Screening

Abstract

Background: Now that severe combined immune deficiency (SCID) has been added to newborn screening panels in all 50 states in the U.S., there is a need to develop and disseminate well-designed educational materials to parents who need information to make informed decisions about treatment and care for identified infants. SCID Compass was designed to address this gap. We summarize the results of two needs assessment activities for parents-a journey mapping exercise and online survey-which will inform the development of a website and new resources.Methods: We conducted in-depth interviews with seven parents of children with SCID identified through newborn screening. Participants were asked to complete a journey map to describe key timepoints related to SCID, starting at diagnosis through present day. This qualitative information informed an online survey that was completed by 76 parents who had a child with SCID. All participants were from the United States.Results: Analysis of journey maps revealed five distinct stages that parents experience: (1) Diagnosis, (2) Pre-Treatment, (3) Treatment, (4) Post-Treatment, and (5) The New Normal. At each stage, parents described unique emotions, challenges, contextual factors that can make a difference in their experience, and information and resource needs. Survey results indicated the highest-rated information needs for parents were understanding available treatment options and what to expect across the SCID lifespan. Emotional support needs included dealing with uncertainty about child's future and additional opportunities to connect with other families. Parents preferred receiving new materials from their healthcare provider or other families, and preferred materials in print, from social media, or online. Several differences were found among subgroups of parents, including those whose child had been identified through newborn screening as well as those considered medically underserved.Conclusions: Findings about unmet parent needs and informational preferences will serve as the foundation for creating a suite of resources for those who have a child Raspa et al.Unmet Parent Needs in SCID with SCID. The materials will be tailored to specific stages of the journey. By using a family-centered approach, we will help to ensure that the materials designed and developed as part of SCID Compass will be understandable, comprehensive, and useful.

Parents’ Use of Social Media as a Health Information Source for Their Children: A Scoping Review

“…Included studies used methodologies such as quantitative (n=15), 1,[21][22][23][24][25][26][27][28][29][30][31][32][33][34] qualitative (n=22), 10, and mixed methodology (n=4) [56][57][58][59] or review (n=1). 60 The majority of studies were conducted in the United States (US) (n=23), 1,23,24,28,29,[32][33][34][35]37,[39][40][41]43,45,47,48,50,52,53,56,58,60 followed by Australia (n=6), 27,38,42,51,54,55 Canada (n=4) 10,…”

“…Seven studies included only mothers, 10,32,40,[46][47][48]51 one study included only fathers 50 and 19 included both parents and/or caregivers. 1,21,24,26,30,31,33,35,36,42,44,45,49,53,54,[56][57][58][59] In asking what are the patterns of parental use of social media to find health information for their children are, our review discovered the majority of quantitative studies of large social media platforms found that parents made extensive use of Facebook (10% to 100%) 1,[21][22][23][24][25][26][27][28][29][30][32][33][34][57][58][59][60] to access health information. Parents also commonly used Twitter (0.8% to 42.9%), 21,23,24,…”

The Landscape of Severe Combined Immunodeficiency Newborn Screening in the United States in 2020: A Review of Screening Methodologies and Targets, Communication Pathways, and Long-Term Follow-Up Practices

“…This paper reveals opportunities to enhance the SCID NBS system by expanding communication pathways and educational outreach and establishing more formal long-term follow-up. As SCID NBS programs and treatments evolve, continued knowledge dissemination regarding lessons learned will further enable programs like SCID Compass to enhance linkages between families and services and to further elaborate long-term follow-up strategies for infants identified through NBS (15).…”

Benefits, challenges and prospects of newborn screening for primary immunodeficiency

“…An important issue is the choice of tactics to inform parents about the positive results of screening. Studies in the United States have shown that families with children with SCID diagnosed by newborn screening experience certain emotional and other challenges at various stages of diagnosis and treatment, from screening and diagnosis to treatment options and prolonged isolation 38 .…”

“…Compass web site was proposed, which contains useful and important information that can help parents overcome stress and uncertainty at different stages of diagnosis and treatment 38 .…”