A Sociodemographic variables questionnaire (Q-SV) for research on family caregivers of children with chronic disease

Abstract

BackgroundChronic 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.MethodsIn 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.ResultsBased 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.ConclusionsPsychosocial and sociodemographic factors are relevant for the development of research processes for families that care for children with chronic diseases.

Psychosocial Factors Predicting Resilience in Family Caregivers of Children with Cancer: A Cross-Sectional Study

“…Sociodemographic variables questionnaire (Q-SV) for research in family caregivers of children with chronic diseases [ 19 ]. This questionnaire contains 20 items that evaluate information on sociodemographic, medical, sociocultural and family variables in families of children with chronic diseases.…”

“…There is also a set of contextual factors and sociodemographic characteristics in family caregivers of pediatric patients that increase the risk of suffering repercussions on physical and psychological health [ 19 ]. The main demographic variables include gender [ 20 ], unemployment [ 8 , 9 ], low income [ 21 ], low education levels [ 22 ], the social support networks [ 23 ], caregiver marital status [ 24 ], number of children in the family [ 25 ], child age [ 26 ] and psychosocial profile of family caregivers [ 27 ].…”

Predictors of Quality of Life among Parents of Children with Chronic Diseases: A Cross-Sectional Study

“…The Sociodemographic Variables Questionnaire (Q-SV) for research on family caregivers of children with chronic disease, by Toledano-Toledano et al [57], contains 17 items that evaluate the following social, family, and clinical variables: age and gender of the patient and caregiver; patient's diagnosis, duration of hospitalization and time since diagnosis; and family caregiver's relationship to the patient (mother, father, other family member), education level (no schooling, primary, secondary, preparatory, bachelor's degree, postgraduate), occupation (homemaker, manual laborer, merchant, employee, student, pensioner, unemployed), marital status (married, living with significant other, separated, divorced, single mother or father, widow/widower), number of years with partner, number of children, type of family (nuclear, semiextended, extended, single parent), family life stage (with small children, with school-age children, with adult children), social support networks (family, friends, religion, institutions, government), religion (Catholic, Christian, none), and monthly income.…”

The psychosocial profile of family caregivers of children with chronic diseases: a cross-sectional study

“…The profile of the caregiver has been defined as a set of demographic, social, cultural and psychological characteristics identified in individuals involved in the long-term care of chronically ill patients [ 9 ]. In this regard, the characteristics of family caregivers are studied from two perspectives: sociodemographic and psychosocial [ 10 ].…”

“…The sociodemographic perspective integrates context variables, demographic characteristics of the family caregiver and patient medical data [ 10 ]. The typical sociodemographic profile of the family caregiver is an adult female figure who is married and a homemaker, has basic or low education, belongs to a low socioeconomic stratum, has been the only caregiver of the patient since the onset of the disease, has been taking care of the sick child for more than a year and spends more than 6 h a day doing so [ 4 – 6 , 11 – 13 ] while bearing the financial burden and having unmet medical needs herself [ 14 ].…”