Background: Chronic diseases in childhood can affect the physical and mental health of patients and their families. The literature on pediatric chronic diseases has found important associations between the sociodemographic variables of children and their caregivers and negative health consequences in families.
Methods: In this study, we aimed to design and validate a questionnaire on sociodemographic variables that would be useful for research on pediatric chronic diseases; and investigate the relationship between sociodemographic variables and psychosocial variables among family caregivers. First, we created a questionnaire that consists of 20 demographic, medical, and family-related items based on a literature review and expert evaluations. This questionnaire was then validated by 335 expert reviewers in the field of Social Work, who work daily with the families of patients with chronic diseases in 10 National Institutes of Health of Mexico. The validation was based on three empirical criteria created specifically for this study, and the reviewers evaluated the usefulness, relevance, and permanence of the items. In a second cross-sectional, correlational and comparative study, a total of 446 family caregivers of children with chronic diseases were interviewed, and they completed the Sociodemographic Variables Questionnaire for research on family caregivers of children with chronic sociodemographic diseases and four psychosocial measurement instruments for evaluating anxiety, depression, caregiver burden and quality of life.
Results: Based on the results of the first study, we created the Sociodemographic Variables Questionnaire (Q-SV) for research on family caregivers of children with chronic diseases, and it includes 17 items that assess demographic, medical, and family characteristics. The results of the second study showed that the 17 sociodemographic variables obtained in the validation by expert judges are useful for measuring and evaluating the relationship between psychosocial variables in families of children with chronic diseases.
Conclusions: Psychosocial and sociodemographic factors are relevant for the development of research processes for families that care for children with chronic diseases.
Keywords: Anxiety; Caregiver burden; Depression; Expert judge; Family caregivers; Pediatric chronic disease; Quality of life; Questionnaire; Social work; Social workers; Sociodemographic variables.