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

Area of Science:

• Pediatric rare diseases
• Caregiver mental health
• Gender studies in healthcare

Background:

• Parenting stress is a significant factor in the well-being of families with children diagnosed with genetic or rare diseases.
• Understanding gender differences in caregiving roles and their impact on stress is crucial for targeted support.
• Previous research has not fully explored the nuances of gender-based disparities in parenting stress and illness perception within this population.

Purpose of the Study:

• To investigate gender differences in parenting stress, health outcomes, and illness perceptions among caregivers of pediatric patients with genetic or rare diseases.
• To identify specific factors contributing to potential gender-based disparities in caregiver burden.
• To inform the development of gender-sensitive interventions for caregivers of children with rare conditions.

Main Methods:

• A concurrent triangulation mixed-methods design was employed.
• A questionnaire survey assessed parenting stress, health outcomes, and illness perceptions in 100 family caregivers (42 men, 58 women).
• Qualitative data on illness perception were collected via free-text responses and analyzed using directed content analysis, complemented by statistical testing of quantitative data.

Main Results:

• Female caregivers, often primary caregivers, reported significantly higher levels of parenting stress and depressive symptoms compared to male caregivers.
• Female caregivers perceived their children's conditions as highly symptomatic with negative consequences, necessitating disease control.
• Male caregivers focused more on the disease's negative impact on their children's quality of life.

Conclusions:

• Gender discrepancies in illness perception may contribute to the elevated stress and depressive symptoms observed in female caregivers.
• Addressing gender-specific perceptions of illness is essential for mitigating caregiver burden in families with pediatric genetic or rare diseases.
• Findings highlight the need for tailored support strategies that acknowledge and address gendered caregiving experiences and stress factors.