Gender Differences in Caring for Children with Genetic or Rare Diseases: A Mixed-Methods Study

Abstract

As a factor in parenting stress, gender differences in caring for children with genetic or rare diseases warrant research attention; therefore, this study explored gender differences in parenting stress, health outcomes, and illness perceptions among caregivers of pediatric genetic or rare disease populations to improve the understanding of such gender differences. Applying a concurrent triangulation mixed-methods design, we conducted a questionnaire survey to assess study measures for 100 family caregivers (42 men and 58 women), which included a free-text response item to probe caregivers’ subjective perceptions of the children’s illness. The gender differences hypothesis was tested with statistics and the qualitative data about illness perception was analyzed by directed content analysis. Most female caregivers served as the primary caregivers and provided more caregiving, while they experienced significantly increased levels of parenting stress and depressive symptoms compared with male caregivers. Female caregivers perceived the conditions of their children’s diseases to be highly symptomatic, with negative consequences and requiring disease control. By contrast, male caregivers had stronger perceptions regarding the negative effects of the disease on the children’s quality of life. The gender discrepancy in viewpoints of illness perception sequence may contribute to female caregivers’ higher levels of stress and depressive symptoms than males.

Perception of Social and Educational Quality of Life of Minors Diagnosed with Rare Diseases: A Systematic Review and Meta-Analysis

“…Obviously, this affects the perception of caregivers toward the quality of life of children affected by RDs. Although the data we used in the educational subscale are limited, they corroborate the study of Chu et al [40] regarding the fact that the perceived dimensions of a disease differ as a function of the type of condition. In this sense, the diseases with greater statistical significance are Ehlers-Danlos Syndrome (systemic disease), congenital limb deficiency (embryogenic disease) and spina bifida (neurological and embryogenic disease).…”

“…In our case, the meta-regression by informant did not reveal significant data with respect to the mothers. Nevertheless, studies such as that of Chu et al [40] concluded that, while female caregivers perceive the diseases of their children as highly symptomatic, along with a greater need for biosanitary control of the pathology, male caregivers show more negative perceptions with respect to the general quality of life of the minors. In addition, most of the informants were mothers or female caregivers, which can influence the attainment of greater scores in the perception of the quality of life of minors with RDs [17,21,22,36,41].…”

“…Chu et al [40] pointed out that caregivers of children affected by RDs considered that they did not have the capacity to take care of themselves or be independent people. Obviously, this affects the perception of caregivers toward the quality of life of children affected by RDs.…”

Special Issue: Psychosocial Considerations for Children and Adolescents Living with a Rare Disease

“…In a mixed-methods study, Chu and colleagues [ 5 ] explored gender differences in parenting stress, health outcomes, and illness perceptions among 100 family caregivers (42 men and 58 women) caring for children with genetic or rare diseases in Taiwan. Measures included the Pediatric Inventory for Parents (PIP) to assess caregiver distress, the Center for Epidemiological Studies Depression Scale Short Form (CES-D Sort Form) to assess caregiver depression, and the Satisfaction with Life Scale (SWLS) to assess life satisfaction [ 5 ]. Open-ended questions were theoretically informed, using Leventhal’s Common-Sense Model of Illness Representation.…”

Methods used to account for caregivers’ sex and gender within studies examining the financial burden of caregivers of children and adolescents : Results from a scoping review

“…The financial burden of caregiving for a child is further complexified by the fact that sex and gender are major determinants of the caregiving experience. 20 , 35 , 41 , 42 The concept of sex, referring to a set of biological attributes assigned at birth, is often interchangeably used with the concept of gender, which refers to sociocultural characteristics evolving in time. 42 Indeed, not only are females more likely than males (sex) to be informal caregivers, gendered characteristics traditionally ascribed with femininity have also been shown to increase the burden.…”