Parents of patients with Duchenne muscular dystrophy (DMD) appear to exhibit moderate posttraumatic growth and have no effective support care plan in most cases, according to a recently published study in the Italian Journal of Pediatrics.
The term “posttraumatic growth” means the positive psychological and emotional changes an individual experiences after a traumatic event or crisis. Unlike posttraumatic stress disorder (PTSD), posttraumatic growth improves the confidence of individuals and their ability to adapt to challenges.
The authors aimed to investigate the prevalence of posttraumatic growth in parents and caregivers of patients with DMD as well as its influencing factors. They provided a survey to over 180 parents of children with DMD. The study used the Zarit caregiver interview (ZBI), the social support rating scale (SSRS), and the posttraumatic growth inventory.
Results showed the mean score of the posttraumatic growth of parents was 56.66, which represents moderate posttraumatic growth. Statistical analysis revealed that social support availability and low caregiver burden were associated with more posttraumatic growth. Other factors associated with posttraumatic growth included the course of the disease, the patient’s age, the number of children and the parent’s working conditions.
Researchers remarked that posttraumatic growth appears to be lower in DMD than in other conditions, such as cancer and autism. They hypothesized that the gap could be due to limited DMD understanding and inadequate support systems.
Furthermore, factors that increase dependency (such as worse health condition) increase caregiver burden and negatively impact posttraumatic growth. “Post-traumatic growth is a process that requires a lot of time, energy, and inner motivation,” the study’s authors noted.
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Families living in rural areas with low education levels also had significantly lower scores than the rest.
The results underscore the need to provide parents and caregivers with social support to improve their psychological health.
“Healthcare managers and government officials should increase their attention to the patients and family with rare diseases and promote regional and national support to these patients and their family and friends,” the authors concluded.
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