Examining the factors related to resilience in families of children with rare diseases: A model proposal

Rare diseases are a chronic, mostly genetically inherited public health problem that occurs in a small number of people in the general population. Rare diseases cause stress in family systems. In the face of this stress that the family faces, they must have problem-solving skills, develop effective coping mechanisms and maintain balance. The main purpose of this study is to examine the level of resilience, factors, and experiences associated with family resilience in the families of children with rare diseases. The study was carried out in a mixed-method design. Sociodemographic questionnaires, Family Resilience Scale, and Positive Mental Health Scale were administered online to 219 family members registered in the Rare Diseases Network; data were analyzed through SPSS. Independent Sample t-Test, Pearson Product Moment Correlation, one-way analysis of variance (ANOVA), Kruskal Wallis H test, and logistic regression were performed. In the qualitative part, the phenomenological approach was used and in-depth interviews were conducted with 18 families (46 family members) in the online environment with the help of a semi-structured interview form. Data were analyzed through MAXQDA. It is mostly a nuclear family, parents are in middle adulthood, they are at middle-lower income level; It has been determined that children regularly need health services and use facilities such as medication, special nutrition plan, physiotherapy, and special education. The average score obtained from the family resilience scale is 137.47 ± 22.34. Accordingly, the resilience level of the families was found to be high. According to the results of logistic regression analysis, the R2 value of the model was calculated as .275 and the correct classification percentage of the model was determined as 69.9. In the nuclear family, the care of the child is mostly carried out by the mother, the siblings experience intense feelings of urgency in this process, the need for support by the root family members, the economic resources are important in the management of rare diseases, the spirituality is used extensively, the family needs socialization and needs psychosocial services. has been determined. Among the factors affecting family resilience, it has been revealed that family members' age, education level, having enough knowledge about rare diseases, high positive mental health, prosocial attitude, and problem-solving skills. As a result of the study, a model proposal for the "Rare Diseases Support Center" based on family resilience was presented.