Families of children with Duchenne muscular dystrophy (DMD) go through significant challenges in dealing with the condition. Few studies have looked into the situation, especially in the sociocultural scenario that is unique to India. The authors' aim was to identify the psychosocial challenges for caregivers of children with DMD. A cross-sectional descriptive study was perfomed among the caregivers of 60 children with DMD who were attending the neuromuscular disorders clinic of a national tertiary referral center for neurological disorders. The knowledge and attitude, psychosocial needs, burden, and coping patterns were assessed in an interview. The findings showed that parents of children with DMD tended to have inadequate understanding of the disease but had a positive attitude, had a moderate family burden, and tended to rely more on religion, focus on and venting of emotions, and instrumental and emotional social support for coping. Caregivers of children with DMD would benefit from psychosocial intervention to address their understanding of and attitude toward the disease, as well as burden of dealing with it, and to help them develop their coping skills and meet their children's and their own needs.

ALS patients and caregivers would benefit from structured care plan that is sensitive to the impact of the illness on the specific domains of quality of life as well as the deterioration in the neurological functioning.

Background Epilepsy, although a common disorder, yet is highly stigmatized. Under this condition, children with epilepsy are more vulnerable to stigmatization, social isolation, lack of support, and psychological and emotional problems. Thus, there is an immediate need of literature focusing on intervention studies to change the attitudes of school teachers and children. Methods The study was conducted with the objectives to evaluate knowledge, attitude, and practices (KAP) about epilepsy among school teachers and children; provide educational training program to teachers; and check the efficacy of training program imparted by teacher and trainer. Results Repeated measure of analysis of variance shows that knowledge (F = 1,134.875, p < 0.001), attitude (F = 2,429.909, p < 0.001), and practice (F = 2,205.122, p < 0.001) are significantly different between pre- and posttests indicated by Pillai’s trace test. Similarly, from the Pillai’s test, knowledge (F = 49.317, p < 0.001), attitude (F = 125.304, p < 0.001), and practice (F = 178.697, p < 0.001) are significantly different among teachers, trainer imparting training to children, and teachers imparting training to children. It is seen that KAP scores significantly differ between two time points and across the three groups. Among all the groups, teachers imparting training to children had high level of practice. Conclusion Inclusion of health education programs in the textbooks and health education schemes for teachers and school children are crucial ways to bring a change in their attitude, behavior, and practices toward epilepsy.

Motor Neuron Disease (MND) leads to significant psychosocial distress for the person with the illness and caregivers. Psychosocial factors influence the management and quality of life to a significant degree. Objective To develop individualised psychosocial intervention program for people with MND and their families in India. Methods People with MND and healthcare staff were constructively involved in co-designing the intervention program in four phases adapted from the MRC framework: 1. A detailed need assessment phase where 30 participants shared their perceptions of psychosocial needs 2. Developing the intervention module (synthesis of narrative review, identified needs); 3. Feasibility testing of the intervention program among seven participants; 4. Feedback from participants on the feasibility (acceptance, practicality adaptation). The study adopted an exploratory research design. Results Intervention program of nine sessions, addressing psychosocial challenges through the different stages of progression of the illness and ways to handle the challenges, specific to the low resource settings, was developed and was found to be feasible. People with MND and families who participated in the feasibility study shared the perceived benefit through feedback interviews. Conclusion MND has changing needs and challenges. Intervention programme was found to be feasible to be implemented among larger group to establish efficacy.

Background Although epilepsy is a common disorder, it is highly stigmatized. Not only public but even teachers are not free from stigmatization and cultural barriers. Under this condition, children with epilepsy are more vulnerable for stigmatization, social isolation, lack of support, and psychological and emotional problems. At the same time, there is an immediate need of literature focusing on intervention studies to change the attitudes of school teachers and children. Materials and Methods The study was conducted with the objectives to evaluate knowledge, attitude, and practices about epilepsy among school teachers and children; provide educational training program to teachers; and check the efficacy of training program imparted by teacher and trainer. Results Repeated measure of analysis of variance shows that knowledge ( F = 1134.875, p < 0.001), attitude ( F = 2429.909, p < 0.001), and practice ( F = 2205.122, p < 0.001) are significantly different between pre- and posttest indicated by Pillai’s trace test. Similarly, from the Pillai’s test knowledge ( F = 49.317, p < 0.001), attitude ( F = 125.304, p < 0.001) and practice ( F = 178.697, p < 0.001) are significantly different among the teachers, trainer imparted training group of children, and teachers imparted training group of children groups. It is seen that knowledge, attitude, and practice scores significantly differ between two time points and across three groups. Among all the groups, teachers imparted training group children had high level of practice. Conclusion Inclusion of health education programs in the textbooks and health education schemes for teachers and school children is a crucial way to bring a change in their attitude, behavior, and practices.