The role of informal networks in healthcare: a study on parents with children affected by a rare disease

This study illustrates the characteristics of a healthcare support network by examining the relationships among parents attending a pediatric medical clinic, alongside sharing information on online social media platforms. The primary objective is to characterize the support needs of parents caring for children with a rare disease. A comprehensive picture of the community is obtained by assessing the quality and quantity of relationships, shedding light on overt and latent needs for practical and emotional support among peers. Results indicate that providing care for a child with a rare disease substantially impacts parents’ and caregivers’ psychological well-being and mental health. The implementation of targeted psychosocial interventions is essential to support parents of children living with rare diseases effectively. Online relationships provide a valuable source of support for families, exemplifying collaborative peer assistance, which ideally should complement secondary formal networks.