Members of IDF’s SCID Compass program recently earned recognition for their hard work in discerning the needs of parents whose children have severe combined immunodeficiency, or SCID.
In early May, Frontiers of Immunology, a scientific journal, published the article “Information and Emotional Support Needs of Families Whose Infant Was Diagnosed With SCID Through Newborn Screening.”
SCID Compass program partner Research Triangle International (RTI) wrote the article and IDF staff reviewed it. The article describes how RTI used research methods to determine how parents felt as they cared for their infants with SCID and what informational challenges they faced during their experiences.
A baby with SCID is born without a functioning immune system, making SCID one of the most life-threatening of all primary immunodeficiencies. Infants with SCID not treated with either a bone marrow transplant or gene therapy may not live past their first year of life. Therefore, parents must have access to treatment information in a timely manner and sufficient support to navigate through this critical period.
RTI employed a two-pronged approach to determine areas where parents required the most assistance. Researchers directed parents to complete a needs assessment activity and participate in a survey.
The needs assessment bore out a detailed account of how parents progress through five stages in their SCID journey including diagnosis, pre-treatment, treatment, post-treatment, and the new normal. Researchers learned parents feel a range of emotions from frustration to relief during the stages and have ever-evolving informational needs.
The survey showed that major topics of concern for parents include deficits in information on available treatments, lack of details about SCID in general, and few, if any, resources for emotional support, particularly through connections with other families.
The SCID Compass program has utilized the assessment and survey results to develop a website, www.scidcompass.org, along with other educational materials designed to provide parents with a guide on their SCID journey. The research has also laid the groundwork for a virtual support group and webinars to connect SCID families with each other.
“The SCID Compass program would like to extend our heartfelt thanks to the families who participated in data collection, shared their stories with us, and helped make www.scidcompass.org a wonderful and accurate resource for families navigating SCID,” wrote the researchers at the end of the article.
A complementary research summary called “Educational and Support Needs for Families Living with SCID,” also resides at www.scidcompass.org. The summary is a two-page brief with colorful graphics, and easy-to-digest nuggets of information presenting the basics of the research results in a reader-friendly and engaging form.
A grant obtained by IDF from the U.S Health Resources and Services Administration (HRSA) allowed the SCID Compass program to enlist the assistance of RTI with the research project.
The SCID Compass program, funded by the HRSA grant, enhances access to and use of educational resources, provides linkages to critical services for patients and families, and develops protocols and mechanisms for long-term follow-up for infants identified with SCID through newborn screening.