End of Life in Boys and Young Men With Duchenne Muscular Dystrophy – The Perspective of Dying Men and Their Families: A Systematic Review and Thematic Synthesis of Qualitative Evidence

Abstract

Understanding the perceptions and experiences related to the end of life (EoL) of boys and men with Duchenne muscular dystrophy from their own and/or family perspective is limited based on the available qualitative empirical studies. This systematic review was done with a thematic synthesis of qualitative evidence according to the PRISMA Statement Guidelines and the SPIDER search tool. The review included empirical, qualitative, and relevant full-text studies published in 2000–2023 in the EBSCO Discovery Service, ISI Web of Science, Scopus, PubMed, and ProQuest databases. From o total of eight included qualitative studies, four main key themes were identified: “Being a parent/caregiver” – psychosocial aspects, needs, and experiences; “Communication about EoL with healthcare and other professionals” – positive experiences and personal shortcomings; “Discussions about…” – the issue of EoL, dying and death; and “End of life” – end-of-life care, planning and the need for palliative care.