Spinal Muscular Atrophy (SMA) and Duchenne Muscular Dystrophy (DMD) are severe neuromuscular disorders that significantly impact the lives of affected children and their families, placing immense pressure on primary caregivers who often experience diminished self-efficacy due to the complexities of caregiving. Both conditions necessitate specialized and time-consuming care, creating substantial challenges for caregivers.These challenges are compounded by the progressive nature of these diseases, which often leads to increased functional decline, discomfort, and respiratory dysfunction in affected children. The constant need for monitoring, administering medication, providing physical support, and managing medical equipment can be overwhelming and exhausting. The complex care requirements associated with SMA and DMD can also lead to social isolation, financial strain, and emotional distress for caregivers, effecting their overall quality of life and potentially reducing their confidence in their ability to manage their caregiving responsibilities. Therefore, understanding interventions that can bolster self-efficacy among primary caregivers of children with SMA or DMD is of paramount importance.
Self-efficacy, defined as an individual's belief in their capacity to execute behaviours necessary to produce specific performance attainments, plays a pivotal role in coping with chronic illnesses and their demanding care routines. When caregivers possess high self-efficacy, they are more likely to approach challenges with confidence, persevere through difficulties, and experience lower levels of stress and burnout. Conversely, low self-efficacy can result in feelings of helplessness, anxiety, and depression, which can ultimately compromise the quality of care provided to the child and their own well-being. Given the substantial impact of SMA and DMD on both the affected children and their caregivers, interventions aimed at enhancing self-efficacy are critical. One such intervention is participation in support groups, which provide caregivers with opportunities to share experiences, gain knowledge, and receive emotional support from others facing similar challenges. While traditional in-person support groups have been shown to be beneficial, they may not always be accessible to caregivers due to geographical limitations, time constraints, or transportation difficulties.
Online support groups have emerged as a promising alternative, offering convenience, accessibility, and anonymity, which may be particularly appealing to caregivers who are already burdened with numerous responsibilities and constraints. These online platforms can facilitate peer-to-peer support, professional guidance, and access to valuable resources, all from the comfort of one's own home. Furthermore, multicomponent support groups using online modalities can integrate various elements, such as educational videos, interactive discussions, and lectures by trained professionals like Neurologists, Nutritionists, Physiotherapists. These may be particularly effective in enhancing self-efficacy by addressing the multifaceted needs of caregivers. Considering the potential benefits of multicomponent support group for primary caregivers of children with SMA or DMD, and the increasing prevalence and duration of chronic illness, there is a need for array of supports for them.
This study is designed to evaluate the effect of a multicomponent support group on the self-efficacy of primary caregivers of children with SMA or DMD enrolled in the Treat-NMD registry of Pakistan. By examining the effect of this intervention, we hope to provide evidence-based recommendations for improving the well-being of caregivers and, ultimately, the quality of care for children with SMA and DMD. The findings from this study will have significant implications for healthcare providers, support organizations, and policymakers involved in the care of individuals with neuromuscular disorders and their families.
