title: The practice of hope: a longitudinal, multi-perspective qualitative study among South Asian Sikhs and Muslims with life-limiting illness in Scotland.
abstract: OBJECTIVE
  We explored the role of faith and religious identities in shaping end of life experiences in South Asian Muslims and Sikhs with life-limiting illnesses.
  
  
  METHODS
  Secondary analysis of data from a longitudinal, multi-perspective qualitative study of the experience of life-limiting illness and access to palliative care services among South Asian Sikhs and Muslims in Scotland. Up to three semi-structured interviews were conducted with 25 participants, 15 family members and 20 health care professionals over a period of 18 months. Analysis was informed by Mattingly's theory on hope.
  
  
  RESULTS
  Hope emerged as a central construct in the accounts of illness constructed by the participants as they struggled to make sense of and uphold a meaningful life. Clinical encounters and, for some, religious beliefs served as sources of hope for participants. Hope unfolded as an active process that enabled them to live with the personal and in particular the social ramifications of their illness. Changing images of hope were formulated and reflected as illness progressed or treatments failed. These ranged from hoping for cure, prolonged life, the regaining of lost capabilities needed to fulfil social roles, or at times death when suffering and the consequences for the family became too hard to bear.
  
  
  CONCLUSIONS
  For those suffering from a life-limiting illness, sustaining hope is a complex challenge. The social character of hope is evident as it focuses on envisioning a life that is worth living, not only for oneself, but most importantly for social relations. Continuity in care at the end of life and a holistic approach is important in order to enable patients to articulate complex and changing notions of hope that at times are silenced within families, and for patients to feel confident in discussing the possible role of religious beliefs in shaping personal notions of hope.
authors.affiliation: a Department of Public Health, Danish Research Centre for Migration, Ethnicity and Health , University of Copenhagen , Copenhagen , Denmark.
authors.forename: Maria
authors.initials: M
authors.lastname: Kristiansen
authors.forename: Tasneem
authors.initials: T
authors.lastname: Irshad
authors.forename: Allison
authors.initials: A
authors.lastname: Worth
authors.forename: Raj
authors.initials: R
authors.lastname: Bhopal
authors.forename: Julia
authors.initials: J
authors.lastname: Lawton
authors.forename: Aziz
authors.initials: A
authors.lastname: Sheikh
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D044466:Asian People / Q000208:ethnology* / Q000523:psychology; D001291:Attitude of Health Personnel; D001293:Attitude to Death / Q000208:ethnology*; D005190:Family / Q000208:ethnology* / Q000523:psychology; D005260:Female; D065026:Hope; D006801:Humans; D007407:Interviews as Topic; D007514:Islam / Q000523:psychology; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D036301:Qualitative Research; D012068:Religion and Medicine; D012606:Scotland; D019452:Terminally Ill / Q000523:psychology*