![]() ![]() Notably, the SCID journey is unique to each parent and not necessarily a linear process. Table 1 depicts these stages of the SCID journey and the events that may occur at each stage. The SCID journey encompasses parents’ experiences with receiving their child’s abnormal newborn screening results and receiving a diagnosis of SCID or a related condition, then proceeding to pre-treatment decision making, treatment, post-treatment, and adapting to a new life after their child returns home from the hospital. To better understand the experiences of parents whose child was diagnosed with SCID, we previously reported on a mixed-methods study that revealed parents’ experiences with SCID may be divided into five stages, collectively described as the SCID journey. ![]() Despite improvements in SCID diagnoses and treatments, SCID remains a life-threatening condition, and parents of children diagnosed with SCID face significant psychological challenges related to their child’s condition. SCID-related morbidity and mortality have significantly declined since the introduction of newborn screening for SCID in 2018 because of earlier diagnosis leading to timely treatment. Treatments, which also include experimental gene therapies for certain types of SCID, have been found to be most successful if delivered prior to the onset of infection. Prior to the development of hematopoietic stem cell transplantation (HSCT) as a treatment for SCID in 1968, the condition was universally fatal, often in infancy. Severe Combined Immunodeficiency (SCID) describes a group of rare genetic disorders characterized by extreme deficits in immune functioning, which leaves affected individuals highly susceptible to frequent, life-threatening infections. Severe combined immunodeficiency syndrome: a source of parental uncertainties 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. Although parents reported challenges in coping with SCID uncertainties, they also reported finding ways to overcome these stressors and establish patterns of effective coping. Our assessment revealed that parents of children diagnosed with SCID use a variety of behavioral, cognitive, and affective approaches to cope with SCID uncertainties. With successful adaptation, parents emphasized that they continue to use these strategies today. Some parents adapted to ongoing uncertainties through such strategies as positive thinking, self-reflection, and relying on family and community. They reported difficulty in processing their emotions and experiencing denial and guilt related to their child’s diagnosis. Participants also described their struggles in coping with stressors related to their child’s health and survival. These coping strategies were both deliberate and intuitive. Other types of coping included establishing house hygiene rules, thinking positively about the child’s treatment progress, and relying on family members for help. Some parents reported coping by playing an active role in their child’s treatment, which included reaching out to other SCID parents or seeking second medical opinions. Parents used a variety of behavioral, cognitive, and affective coping strategies which evolved throughout their SCID journeys. Transcripts were generated from the interviews and analyzed using an inductive content analysis approach which included data immersion, generation and assignment of codes, and interpretation. The interviews explored uncertainties related to their child’s diagnosis and how parents coped with these uncertainties. We conducted 26 in-depth interviews with parents whose child was diagnosed with SCID or a SCID-like condition through newborn screening. To fully understand parents’ experiences throughout their SCID journey, it is important to explore the stressors generated by such uncertainties and how parents cope with these stressors. Parents of children with SCID experience many uncertainties related to their child’s diagnosis, treatment, recovery, and quality of life. Severe combined immunodeficiency (SCID) is a group of rare genetic disorders that cause disruption in immune system functioning.
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