The aim of our study was to explore the post-traumatic growth status of parents with children with Duchenne muscular dystrophy and to identify influencing factors of post-traumatic growth. The post-traumatic growth of parents with children with DMD appeared to be on a moderate level and was positively correlated with social support and negatively correlated with care burden. The multiple linear regression identified that the age of the child, course of disease, self-care ability, parents’ working condition, residence, education, number of children, and health status were the main influencing factors for post-traumatic growth of parents.
The clinical manifestations of Duchenne muscular dystrophy (DMD) are progressive muscle atrophy and weakness, with 90% of patients experiencing pseudohypertrophy of the gastrocnemius muscle, most with myocardial damage, and a few with intellectual disabilities. The average survival rate is between 2 and 30 years [18]. As the disease progresses, families with DMD patients face a series of psychological and nursing challenges [19]. This causes serious trauma to the families of the affected children. Research has shown that a positive attitude towards the future can help injured individuals better cope with current traumatic events and improve the negative physical and mental experiences they bring [20]. We conducted a survey among parents and found that their post-traumatic growth is at a moderate level and needs to be improved. Our results are not only much lower than the post-traumatic growth levels of parents with children with cancer, but also lower than the post-traumatic growth levels of parents of children with autism [21–22]. This may be related to people's better understanding of cancer than DMD, and the social support system and medical security systems in different countries are more complete than those in China. For example, hospital social workers and home care is differently organized in the Chinese health system. This indicates that we should pay more attention to improving relevant policies and expanding the social support system for families with DMD patients to promote their post-traumatic growth.
The results of our study showed that 9.9% of the children were completely dependent on others, 15.5% of the children's illnesses occurred within one year, and 3% of the children were less than three years old. The post-traumatic growth score of parents of these children was significantly lower than the average level. This may be related to the young age of children, poor self-care ability, heavy care burden of parents, and lack of knowledge on the disease. Relevant studies have also shown that with the extension of the disease course, parents have more understanding of relevant knowledge, and their care ability is improved in the long-term care process [23]. Therefore, in this process, parents gradually adapt to the changes brought on due to the disease through a series of psychological adjustments. In addition, our research results indicate that parents who reside in rural areas are in a state of resignation, have low levels of education, and have multiple children also have significantly lower post-traumatic growth scores than the average. This is consistent with the results of other studies [24–25] and may be related to the increased burden of parents' care, limited economic level, and susceptibility to physical and mental fatigue. In addition, due to the low level of education and limited resources available to parents living in rural areas, it affects their correct understanding and psychological response to the disease. However, unlike another study [26], we did not find remarkable differences in the level of post-traumatic growth among parents of different genders, which may be related to cultural differences and differences in the family structure and functional divisions in China.
Our study found that post-traumatic growth is positively correlated with social support, meaning that the higher the social support level of parents, the higher their post-traumatic growth level. The outline of the Healthy China 2030 plan proposes to ‘comprehensively and comprehensively maintain and guarantee people's health, significantly improve health standards, and significantly improve health equity’ [27]. Rare disease groups are increasingly receiving social attention, and studies have shown that families with social support can better cope with the occurrence of stressful events [28], actively face the pain caused by the disease in their families lives and alleviate the negative impact of stressors on their families [29]. Strengthening social connections through social networks can alleviate parents' physical and mental stress, improve their social adaptability, and enhance their mental health level [30]. Therefore, we believe that improving social support is an important factor in achieving post-traumatic growth. Healthcare professionals should provide social support to parents of children with DMD through various channels to raise the public awareness of rare diseases.
The results of our study show that the higher the parents' care burden, the lower the level of post-traumatic growth. Additionally, in our study, the care burden of parents was significantly higher than those with diseases such as cancer and autism [31–32]. This may be related to the high mortality of DMD, the uncertainty of treatment, and the anxiety brought about by the upcoming long-term care pressure. A study indicated that primary caregivers of children are more likely to independently take on the main care tasks, making them more susceptible to physical and mental exhaustion [33]. If combined with economic pressure, they face greater pressure, leading to low levels of post-traumatic growth. This requires clinical healthcare workers to provide parents with more nursing knowledge and skills and pay attention to their psychological state to improve their care ability, reduce their care burden, and promote their post-traumatic growth. Meanwhile, our study found a negative correlation between care burden and social support as well, which is consistent with other studies [34–35]. Family is an important support system, and we should encourage parents and other family members to participate in the care process of children. Medical staff should also provide psychological and social support to parents to improve their physical and psychological stress caused by adverse nursing experiences.
Our study has some limitations to address. Firstly, although the parents surveyed in our study came from various parts of China, they completed the survey while visiting our hospital which could have influenced the completion of the self-administered online survey. Secondly, the study investigated the post-traumatic growth only at one time-point; the research team have not conducted a comparative analysis of the post-traumatic growth levels of parents at different stages of the patient's illness, which is recommended to gain a full understanding of factors influencing post-traumatic growth in this cohort of family and carers with children with DMD.