The relationship between parental stress, resilience, and quality of life in parents of children with epidermolysis bullosa

Epidermolysis bullosa (EB) is a rare and often severe genetic disorder that poses significant challenges for affected children and their families. Managing this condition, particularly in terms of wound care and pain relief, creates numerous challenges for parents and can lead to increased parental stress. This stress can adversely affect parents' quality of life and mental health. Resilience is crucial in helping parents cope with difficulties and improve their psychological well-being. Therefore, this study aims to determine the relationship between parental stress, resilience, and quality of life in parents of children with EB. This study is a descriptive cross-sectional study. One hundred parents (77 mothers and 23 fathers) of children with EB visiting healthcare centers affiliated with Hamadan and Shiraz Universities of Medical Sciences who met the inclusion criteria were enrolled in the study through a census method. Data collection tools included a demographic questionnaire, the Abidin Parenting Stress Index, the Connor-Davidson Resilience Scale, and the SF-36 Quality of Life Questionnaire. The parents completed the questionnaires in person. After data collection, statistical analysis was conducted using descriptive and analytical methods with SPSS version 26. The findings indicated that the mean (standard deviation) scores of parental stress in parents of children with EB were 151.28 (± 2.36), the mean (standard deviation) scores of resilience were 49.86 (± 2.63), and the mean (standard deviation) of quality of life was 41.32 (± 2.32). There was a strong inverse correlation between parental stress and resilience (r = -0.89, p < 0.001), a strong inverse correlation between parental stress and quality of life (r = -0.86, p < 0.001), and a strong direct correlation between resilience and quality of life (r = 0.88, p < 0.001). Additionally, a relationship was found between parental stress and demographic variables, including mother's age, mother's education, mother's occupation, father's education, type of EB, number of affected children, and family income, which accounted for 69.34% of the variations in parental stress. Parents caring for children with EB experienced high levels of stress, moderate resilience, and low quality of life. Furthermore, high parental stress led to decreased resilience and quality of life. Parental stress was closely associated with demographic variables such as the number of affected children, family income, type of EB, mother's education, mother's age, father's education, and mother's occupation. Accordingly, healthcare professionals can facilitate the adaptation and participation of these parents in caring for children with EB by providing supportive environments, counseling, and education.