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Parents' Experiences of Receiving a Severe Combined Immunodeficiency (SCID) or Non-SCID T-Cell Lymphopenia Outcome
Pru Holder1, Chloe Musa2, Jim B Chilcott3
1Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College, London SE5 9PJ, UK.
Insights
Parents of infants screened for severe combined immunodeficiency (SCID) had complex experiences. Tailored support is crucial for families receiving SCID or non-SCID T-cell lymphopenia (non-SCID TCL) results.
Area of Science:
- Pediatric Immunology
- Newborn Screening
- Public Health Policy
Background:
- Evaluation of newborn bloodspot screening (NBS) for severe combined immunodeficiency (SCID) was commissioned in England in 2021.
- This study explores parental experiences with SCID NBS results.
Purpose of the Study:
- To understand parental experiences with SCID and non-SCID T-cell lymphopenia (non-SCID TCL) results from newborn bloodspot screening.
- To inform support strategies for families undergoing SCID screening.
Main Methods:
- Qualitative exploratory design.
- Semi-structured interviews with 12 parents (5 SCID, 7 non-SCID TCL).
Main Results:
- Parents of SCID-diagnosed infants experienced complex emotions due to presymptomatic diagnosis.
- Parents of non-SCID TCL infants perceived their child's condition as less severe than SCID.
- All parents valued their participation in the screening evaluation.
Conclusions:
- Psychosocial support for families with positive SCID screening results requires careful consideration.
- Support needs to be tailored, acknowledging the unique experiences of parents compared to those with non-screened infants with SCID.
Background:
In 2021, the UK National Screening Committee commissioned an evaluation of newborn bloodspot screening for severe combined immunodeficiency (SCID) in England. This paper describes the experiences of parents who received an SCID or non-SCID T-cell lymphopenia (non-SCID TCL) result for their baby during the evaluation.
Methods:
A qualitative exploratory design was employed using semi-structured interviews with 12 parents (n = 5 who had received an SCID outcome and n = 7 who had received a non-SCID TCL following SCID NBS).
Results:
The impact on parents whose baby was diagnosed with SCID was complex, reflecting the experience of receiving a presymptomatic diagnosis. Parents of babies who had been diagnosed with a non-SCID TCL viewed their baby's result in terms of risk; while their baby might still have a serious immunological condition, it was not considered to be as serious as SCID. All parents reported that they valued their participation in the SCID screening evaluation.
Conclusions:
Support for families following a positive screening result for SCID needs to be considered. This includes tailored psychosocial support, given their experiences will not be the same as those of parents of non-screened babies with SCID.
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