Rare in prevalence, but common in needs: Supportive needs of parents caring for a child with rare disease

The representation and coordination of programs in early intervention for children with rare diseases indicate that support for parents may be lacking as well. To gain knowledge about the needs of parents caring for a child with a rare disease, this research aimed to identify the supportive needs of affected families and their interrelations and to investigate the relationship between different aspects of needs with the place of residence and the age of the parents. The research was conducted on a sample of 43 parents (43 mothers, 2 fathers) of preschool children (median 3 years, mean age 3 years, SD = 1.3) with rare diseases. Socio-demographic characteristics were evaluated, and the Parental Need Scale for Rare Diseases (PNS-RD) was used to assess parental needs. The results indicate that parents reported medium to high levels of psychosocial needs (PNS-DR mean Total Score = 42.8, SD = 7.3). The parents living in rural areas expressed a greater level of supportive needs, which was particularly relevant to the emotional burden. No difference in any aspects of needs was found among parents of different age groups. Emotional issues and parents' need for support in understanding their child's illness were positively related (r = 0.48, p = 0.013). Our study indicates that the supportive needs of parents of children with rare diseases are characterized by significant emotional effort and an urgent demand for effective social support networks. The obtained insights provide guidelines for a better understanding of parental needs through a comprehensive framework that takes into account emotional, informational, and systemic factors that will lead to improved outcomes for both parents and children. Furthermore, our results highlight the importance of improving family-centered care approaches.