Quality of life and care burden in mothers of primary immunodeficient children receiving SCIG and IVIG: A descriptive correlational study.

PURPOSE: This study aimed to determine the Pediatric Quality of Life with PID according to their method of Ig administration, the care burden of their mothers, and the relationship between these two factors.

DESIGN AND

METHODS

This descriptive and correlational study was conducted with children aged 2-18 years diagnosed with primary immunodeficiency and their mothers at a university hospital in Konya (n = 98). Data were collected using the "Child and Mother Diagnosis Form," the "Pediatric Quality of Life Inventory (PEDSQL)," and the "Caregiving Burden Scale."

RESULTS

According to both parent and child reports, there was no significant difference in Pediatric Quality of Life scores between IVIG and SCIG groups SCIG (p > 0.05). Similarly, maternal caregiving burden did not differ significantly by IG administration method or age range (p > 0.05). Notably, a strong negative correlation was identified between children's quality of life and maternal care burden in mother-reported outcomes (r = -0.710, p = 0.000). However, this relationship was not statistically significant in child-reported outcomes.

CONCLUSION

In conclusion, the method of Ig administration (IVIG vs. SCIG) does not appear to influence pediatric quality of life or maternal caregiving burden. However, a significant link exists between these two variables: as the child's quality of life decreases, the mother's caregiving burden increases, especially according to parental reports.

PRACTICE IMPLICATIONS: Nursing interventions aimed at improving parental skills can be incorporated into parental skill-based treatments, such as SCIG, to reduce maternal care burden.