Faith, Family and Finitude: A Phenomenological Inquiry into the Lived Experiences of Adults Facing Terminal Illness

Abstract

Despite the above projections, there is a dearth of evidence from the perspective of the person facing the end-of-life in Muslims majorities and Urdu speaking communities in particular, where they experience suffering associated with serious health-related problems. Eight adult participants (six females and two males, ages 27-58 years) were recruited via convenience sampling and snowball sampling and interviewed in a qualitative phenomenological study. The interviews which were semi-structured were conducted in Urdu in the participants' homes and focused on nine domains: physical, psychological, and social experience; appreciation of life; self-transcendence; attachment to God; attitudes toward death; hope; and legacy. Thematic analysis based on a phenomenological approach was used to analyze transcripts. There were nine themes identified. They reported on multimorbidity, pain, disrupted sleep and loss of independence, anxiety (often about money), one episode of acute disorientation, and social worlds that were shrinking beyond the household. The act of devotion, thanking, and prayer were described repeatedly as sources of relief. Notions of death went from fear of death at night to trust in divine mercy, often in a single story. Patience and service, and passing on faith, were founded in the children, as was hope and legacy. The author does not depict the suffering and meaning as occurring one after the other, but side by side. The results are preliminary, as the sample was small and heterogeneous, and the prognosis was more liberal than usual, but they do confirm a holistic approach to care which regularly considers spiritual needs, family relationships and financial concerns. More longitudinal, larger, and caregiver-inclusive studies are required.