Assessing the supportive care needs of parents of children with rare diseases in Ireland

PURPOSE: Rare diseases are individually uncommon yet collectively prevalent. They affect over 300,000 people in Ireland, with 50-70 % impacting children. This study explores the supportive care needs of parents caring for children with rare diseases in Ireland, utilising a validated Parental Needs Scale for Rare Diseases (PNS-RD).

DESIGN AND METHODS: This descriptive quantitative study employed survey techniques to assess parental support needs. An online survey was administered to parents across Ireland from August 2021 to December 2021 using the Qualtrics™ platform.

RESULTS: Out of 107 consented participants, 89 provided data suitable for analysis. Findings revealed significant challenges, with children averaging six hospital visits per year; 77 % of families indicated special education needs, and 42 % required medically complex care. The PNS-RD scale mean was M = 48.62 (95 % CI: 44.5-52.7), comprising four dimensions (each scored out of 25): i) Understanding the disease (M = 9.01, 95 % CI: 7.5-10.5), ii) Working with health professionals (M = 13.68, 95 % CI: 12.0-15.4), iii) Emotional issues (M = 13.22, 95 % CI: 12.0-14.5), and iv) Financial needs (M = 12.94, 95 % CI: 11.2-14.6). Parents demonstrated confidence in managing their child's care but reported considerable emotional strain and financial challenges.

CONCLUSION: While parents generally felt confident in handling their child's rare disease and were moderately satisfied with the care and support received, the emotional, psychological, and financial toll remained high.

IMPLICATIONS FOR PRACTICE: This study underscores the urgent need for comprehensive support systems to alleviate these burdens, advocating for tailored healthcare and social support interventions to meet the diverse needs of these families.