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

Abstract

Background A family caregiver is defined as a person who has a significant emotional bond with the patient; this caregiver is a family member who is a part of the patient’s family life cycle; offers emotional-expressive, instrumental, and tangible support; and provides assistance and comprehensive care during the chronic illness, acute illness, or disability of a child, adult, or elderly person. The objectives of this study were to identify the psychosocial profiles of family caregivers of children with chronic diseases and to establish the relationship between these profiles and sociodemographic variables. Methods A cross-sectional study was conducted involving 401 family caregivers of children with chronic diseases at the National Institute of Health in Mexico City. The participants responded to the Sociodemographic Variables Questionnaire (Q-SV) for research on family caregivers of children with chronic disease and a battery of 7 instruments that examined anxiety, caregiver burden, family support, depression, resilience, parental stress, and the World Health Organization Well-Being Index. Results A hierarchical cluster analysis and its confirmation through a nonhierarchical cluster analysis confirmed two profiles of caregivers of pediatric patients with chronic diseases. Profile 1, called Vulnerability of family caregivers, is characterized by high levels of anxiety, depression, parental stress and caregiver burden, accompanied by low levels of family support, resilience, and well-being. Profile 2, called Adversity of family caregivers, shows an inverse pattern, with high levels of family support, resilience, and well-being and low levels of anxiety, depression, parental stress and caregiver burden. The sociodemographic characteristics are similar for both profiles, with the exception of the caregiver’s family type. Profile 1 shows more single-parent caregivers, while profile 2 includes more caregivers with a nuclear family. However, the type of family did not reach significance for predicting the caregiver’s profile in a bivariate logistic regression model. Conclusions The psychosocial profile of family caregivers of children with chronic diseases can be structured according to their psychosocial characteristics. Although no causal factors were detected that define criteria for belonging to one or another profile, the characteristics identified for each indicate the need for specific and differentiated intervention strategies for families facing adversity, risk and vulnerability during a child’s disease.

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

“…The parents included in this study were predominantly young adult women who had a primary or secondary education, were Catholic, and had a low income. These characteristics match those reported in previous studies [9,75]. The patient characteristics included a diagnosis of cancer (three-quarters of the patients) or another chronic disease (including medical complications of Down syndrome), a time since diagnosis of over three years and a length of hospitalization of over one month.…”

Validity and Reliability of the Beck Anxiety Inventory (BAI) for Family Caregivers of Children with Cancer

“…Within the primary caregiver population, parents were the subpopulation of interest because they are almost always the only caregivers of chronically ill children [ 8 ]. Other types of relatives (e.g., grandparents, uncles or older brothers) appear very exceptionally [ 13 ].…”

“…A review of published empirical research shows that psychosocial factors are associated with anxiety in family caregivers of chronically ill children [ 6 ] and that these caregivers have a higher prevalence of anxiety and distress than the general population [ 7 ]. Empirical findings suggest that family caregivers may experience high levels of anxiety, depression, parental stress and caregiver burden accompanied by low levels of family support, resilience and well-being [ 8 ]. These disorders are related to cognitive symptoms (forgetfulness, attention deficit, inability to concentrate), physiological symptoms (neurodermatitis, interrupted sleep, changes in appetite), psychosocial symptoms (agitation, loss of interest, fixations) [ 9 ] and other adverse family dynamics and personal responses to crises or conflicts related to the caregiver burden [ 10 ].…”

“…A structure of two (somatic and cognitive symptoms) [ 18 ], three (somatic, cognitive and panic symptoms) [ 20 ] or four factors (neurophysiological, subjective, panic and autonomic symptoms) [ 21 ] was expected as well as excellent or good reliability of the scale and excellent to acceptable reliability of its factors [ 18 , 19 , 20 , 21 , 22 , 23 , 27 , 28 , 29 , 30 , 31 , 33 ]. The distribution of scores on the BAI was expected not to follow a normal distribution but to be skewed and to show that the caregivers display high levels of anxiety [ 7 , 8 , 9 , 11 , 35 ]. Regarding concurrent validity, the hypothesis was a direct relationship between anxiety and depression with a moderate to high association since both are negative affects [ 7 , 11 ]; in addition, a mixed syndrome of anxiety and depression was expected, in which both types of symptoms overlap [ 37 ].…”

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

“…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 ]. Context factors comprise time elapsed since diagnosis [ 28 ], development of the chronic disease [ 8 , 29 , 30 , 31 ], type of cancer [ 32 ] and duration and impact of care [ 33 , 34 ].…”