Orphanet journal of rare diseases · 2026
Comparison of parental caregivers and associated factors with caregiver burden in rare paediatric diseases.
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Brandt Maja, Inhestern Laura, Zybarth David, Otto Ramona, Härter Martin, Bergelt Corinna
Аннотация
BACKGROUND: Caregiving for children with rare diseases is associated with substantial psychosocial and practical burden, yet evidence on associated factors of caregiver burden across heterogeneous rare disease populations remains limited.
METHODS: In this cross-sectional study, 123 parents (84% female) of children with rare diseases were recruited from specialised centres and patient advocacy organisations in Germany. Parents were descriptively analysed and compared according to the presence of disease-related care needs. Factors associated with caregiver burden among parents of children with care needs were examined using multiple linear regression.
RESULTS: Overall, 23% of parents reported borderline or clinically relevant depressive symptoms and 77% reported at least one unmet supportive care need. Within the care needs subgroup, 24% reported high caregiver burden. After adjustment for multiple testing, group differences between parents of children with and without care needs were not statistically significant for depressive symptoms, unmet supportive care needs, or treatment satisfaction, although medium effect sizes indicated potentially meaningful differences. Children with care needs were significantly younger, had earlier symptom onset, and tended to show higher symptom severity. Lower care-related quality of life, higher socioeconomic status, parental depressive symptoms, and lower treatment satisfaction were identified as the strongest factors associated with caregiver burden.
CONCLUSIONS: Caregiver burden in parents of children with rare diseases in Germany is multifactorial and shaped by both child- and parent-related factors. The unexpected association between higher socioeconomic status and greater caregiver burden requires further investigation. These findings support the need for systematic caregiver burden screening and holistic, family-centred interventions across all socioeconomic groups.
METHODS: In this cross-sectional study, 123 parents (84% female) of children with rare diseases were recruited from specialised centres and patient advocacy organisations in Germany. Parents were descriptively analysed and compared according to the presence of disease-related care needs. Factors associated with caregiver burden among parents of children with care needs were examined using multiple linear regression.
RESULTS: Overall, 23% of parents reported borderline or clinically relevant depressive symptoms and 77% reported at least one unmet supportive care need. Within the care needs subgroup, 24% reported high caregiver burden. After adjustment for multiple testing, group differences between parents of children with and without care needs were not statistically significant for depressive symptoms, unmet supportive care needs, or treatment satisfaction, although medium effect sizes indicated potentially meaningful differences. Children with care needs were significantly younger, had earlier symptom onset, and tended to show higher symptom severity. Lower care-related quality of life, higher socioeconomic status, parental depressive symptoms, and lower treatment satisfaction were identified as the strongest factors associated with caregiver burden.
CONCLUSIONS: Caregiver burden in parents of children with rare diseases in Germany is multifactorial and shaped by both child- and parent-related factors. The unexpected association between higher socioeconomic status and greater caregiver burden requires further investigation. These findings support the need for systematic caregiver burden screening and holistic, family-centred interventions across all socioeconomic groups.