SCID uncertainty paper examines how parents cope

Parents of children with severe combined immunodeficiency (SCID) exhibit resiliency as they learn to overcome the stress associated with a life-threatening diagnosis. They rely heavily on support from healthcare providers, family, friends, and parents in the SCID community and demonstrate their own ability to create coping strategies.

Such is the conclusion of a study culminating in a research paper, “Parental coping with uncertainties along the severe combined immunodeficiency journey,” recently published in the Orphanet Journal of Rare Diseases and authored by SCID Compass collaborators from Research Triangle International (RTI), the National Cancer Institute (NTI), and the Immune Deficiency Foundation (IDF).

Navigating SCID, a primary immunodeficiency (PI) that disrupts immune system function and is fatal unless treated in infancy, causes significant stress, trauma, and psychological challenges, but researchers have conducted few studies about how parents cope with uncertainties at various points in the diagnosis. This study, based on interviews with 26 parents of children with SCID, fills an information gap.

“Although parents reported challenges in coping with SCID uncertainties, they also reported ways to overcome those stressors and establish patterns of effective coping. Findings from our study can serve as a guide for parents whose child was newly diagnosed with SCID and for providers such as social workers, genetic counselors, and psychologists,” according to the paper.

In a previous study, RTI reported on how the experiences of parents caring for a child with SCID – known as the SCID journey – can be divided into five stages: diagnosis, pre-treatment, treatment, post-treatment, and the new normal. For the uncertainty study, researchers categorized parents’ feedback into these five stages as they move from crisis mode during diagnosis to processing information and making a plan to move forward during treatment and recovery.

According to the uncertainty study, at diagnosis, parents report feeling confused and anxious and have many questions about SCID and its impact on their child’s health. Parents cope through information seeking as they research SCID online, speak with other families, and consult with providers. They feel calmer after listening to the medical team describe the cause of SCID and discuss treatment options.

Moving into the pre-treatment stage, parents say they feel overwhelmed and anxious as they face decisions about what treatment type (bone marrow transplant versus experimental gene therapy) to pursue, which treatment center to choose, and whether to undergo pre-treatment chemotherapy. They also struggle with health insurance considerations, how to care for their other children at home, and the logistics of keeping their baby safe in isolation. 

To cope, parents take a more active role in decision-making as they weigh the advantages and disadvantages of treatments, ask physicians questions, and consult with other parents who have children with the same type of SCID. Trusting the treatment team also helps them manage their emotions and cope with the stress of being in the hospital setting.

Parents express anxiety and worry at the treatment stage, mainly over concerns the treatment will fail. Again, taking an active role in their child’s medical care helps parents push their uncertainties aside and focus on taking actions like tracking their child’s medication, ensuring nurses followed hygiene protocol, and making minor treatment suggestions.

Post-treatment worries include treatment outcomes, not meeting the needs of other children at home, missing work for long periods of time, medical insurance coverage, and limited financial resources. Families rely upon other family members, friends, social workers, and care coordinators to feel better equipped to manage these uncertainties.

When parents settle into the new normal at home, they experience uncertainties about their child’s future health, particularly the long-term effects of chemotherapy and life expectancy. They also cope with strains on relationships in the family and feel overwhelmed as they grapple with ensuring the child’s safety and balancing household responsibilities. To overcome these challenges, parents take actionable steps. They establish house rules and hygiene protocols, seek physical and occupational therapy for their child, and focus on the positive outcomes and progress made.

Other overall strategies parents used for coping included using skills learned from experience with trauma (such as coping with the death of a loved one), confiding in their partners, seeking support from faith communities, self-reflecting on stressors and making adaptations, and focusing on the positive.

Even though parents forge productive paths to ease their uncertainties, some struggle with emotions like guilt – because SCID is a genetic condition, parents blame themselves for their child’s condition. Some parents interviewed didn’t practice self-care because their attention focused wholly on their child. Others avoided processing their feelings and instead focused on their jobs but found that the trauma lingered and interfered with their functioning.

“Given the variability in how parents changed their coping strategies, genetic counselors and medical providers with expertise in SCID may be well positioned to help parents recognize when a coping approach is not sustainable or otherwise ineffective. They also can help explore other strategies with parents that may better address the source of the stress resulting from the uncertainties,” according to the paper.

Furthermore, parents of children with SCID benefit greatly from connecting with other families, particularly at the beginning of the SCID journey. When they meet other families, they feel less isolated and alone in their fears about the uncertainty surrounding their child’s condition.

“The examples parents shared in this study about the successful ways they managed stressful uncertainties may help others find hope in their innate ability to accept and overcome uncertainties,” wrote the researchers.

“When faced with critical situations and challenging decisions, parents were surprised by their own abilities to manage and navigate the complexities of the SCID journey. This sentiment is reflected in the following words of one mother, ‘I learned a strength I never knew I had.’”