Virtual leadership program for adolescents with muscular dystrophy: a process evaluation

ABSTRACT

Children with muscular dystrophy go through the challenge of moving into adolescence compounded with the challenge of living with a debilitating muscle disease. This paper describes the process evaluation of a group leadership program for adolescents with muscular dystrophy. A five-day online program was conducted for 14 participants, 12 males, and 2 females, between 13 and 18 years, beneficiaries of Mobility in Dystrophy (MIND) trust, Kerala, India. The sessions, which lasted around one and a half hours each, focused on self-discovery through a participatory strength-based approach. The participants’ feedback was thematically analyzed. The process evaluation parameters, fidelity, dose delivered and received, reach, and context were found to be effective. The 100% attendance of the participants and their perceived improvement in self-confidence, self-awareness, friends circle, skills-set, and leadership were identified as positive outcomes. Psychosocial intervention programs through the online platform, with structured follow-ups for adolescents with life-limiting conditions would be beneficial.

KEYWORDS:

• Process evaluation
• muscular dystrophy
• group therpy
• leadership program
• adolescents

Acknowledgments

We would like to acknowledge the organization Mobility in Dystrophy (MIND) Trust, Kerala, for providing us with an opportunity to reach adolescents with Musclular Dystrophy. We would also like to acknowledge Ms. Divya and Mr. Jabeer, the volunteers from MIND who coordinated the program and supported us throughout this program.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This intervention program did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.