An individualised psychosocial intervention program for persons with MND/ALS and their families in low resource settings

Abstract

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.