“I don't know whether I will be alive or not” - An interpretative phenomenological analysis of young adult males with Duchenne Muscular Dystrophy making sense of self and life

• Published in: Disability and health journal Vol. 17; no. 2; p. 101578
• Main Authors: Ee, Jonathan, Chong, Poh-Heng, Poh, Ya-Nee, Ang, Raymond, Yeo, Zhi-Zheng
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01.04.2024
• Subjects: Adult; Adulthood; Caregivers; Disabled Persons; Duchenne Muscular Dystrophy; Health Personnel; Humans; Internet; Interpretative phenomenological analysis; Lived experience; Male; Muscular Dystrophy, Duchenne; Palliative care; Young Adult; Palliative care; Lived experience; Interpretative phenomenological analysis; Adulthood; Duchenne Muscular Dystrophy
• ISSN: 1936-6574; 1876-7583
• DOI: 10.1016/j.dhjo.2023.101578

With ventilatory support, boys with Duchenne Muscular Dystrophy (DMD) now live longer. The emerging adulthood offers unanticipated opportunities for identity exploration. Existing literature has raised issues around transitions and implicit obligations within structural and sociological domains; intrinsic challenges are posed, while concurrently engendering possibilities in an uncertain future. Reveal lived experience and meaning making among men with advanced DMD living outside the western context. Secondary data, essentially transcripts of semi-structured interviews with five young men with DMD, age ranging from 23 to 37 years, conducted as part of a larger study were analysed iteratively in depth. Given their underlying vulnerability associated with significant physical dependencies, all respondents were receiving palliative care from the local hospice, and lived with family caregivers at home. Three themes encapsulated the essence of their lifeworld at this juncture. Each shared poignant stories of having survived adverse circumstances in the past, learning to live with themselves in the current state of disabilities and disconnection with peers. Yet, moments of yearning surface, to make new friends and find gainful employment like everyone else. Ambivalence notwithstanding, they navigated societal marginalization through digital media, or found meaning in family bonding and existential dimensions. Faced with uncertainty, most embraced the status quo in silent resignation, to minimise disappointment or as pragmatic responses to enduring systemic and personal barriers. Study findings expounded challenges men with advanced DMD grappled that ultimately shaped self-identity. Healthcare professionals could support this group of precarious survivors even better through individualised person-centred care.