The hope of the family from the perspective of mothers of children with rare diseases

Objective: to describe the levels, relationships, and attributes of hope present in families of children with rare diseases, from the maternal perspective. Method: this is a descriptive, cross-sectional study with a quantitative and qualitative approach conducted with 16 mothers recruited through the Rare Diseases Outpatient Clinic of a public hospital in Brasília, Federal District; and complementarily using the snowball sampling strategy. Data collection took place from February to May 2024 through application of the Herth Hope Scale and the construction of the family’s ecomap and hope genogram, guided by a semi-structured and audio-recorded interview. The analysis followed the scores of the hope scale and the thematic content analysis method. Results: most mothers presented high levels of hope (scores above 40), standing out in the dimension of ‘sense of positive readiness and expectation’. The lowest scores were in ‘interconnections with oneself and with others’. Relationships linked to family support networks, religious communities, mutual support groups for parents, friends, neighbors, school, work environment, and healthcare professionals were important in promoting hope. Positive energy and affection stood out in personal attributes, while courage and serenity were less perceived. Coping strategies included moralizing memories and spiritual support, present in mothers and their families. Conclusion: hope, in the experience of a child’s rare disease, proved essential to coping and the well-being of mothers and family, and should be central to healthcare. The study guides development of relational skills to assess and intervene in hope.