title: Dynamics in the sense of dignity over the course of illness: A longitudinal study into the perspectives of seriously ill patients.
abstract: BACKGROUND
  Loss of personal dignity in patients with a serious and progressive disease is associated with psychological suffering and loss of the will to live. Preservation of a sense of dignity in the seriously ill should therefore be a primary concern throughout the illness trajectory from diagnosis onward. However, there is currently limited insight into the dynamics of patients' sense of dignity during the progression of illness.
  
  
  OBJECTIVE
  This longitudinal qualitative study investigates patients' experiences with dignity over time in a diverse patient population (cancer, early-stage dementia and severe chronic illnesses).
  
  
  METHODS
  Nineteen patients were interviewed annually (max. 4 years), resulting in a data base of 56 interviews in total. Data were analyzed making use of thematic analysis.
  
  
  RESULTS
  Three different trajectories over time could be distinguished: (a) a Dynamic Equilibrium in which the individual's sense of dignity was temporarily diminished followed by a return to previous levels; (b) a Downward Trend in which the sense of dignity was diminished with progression of the disease without a return to previous levels; and (c) Stability in which the sense of dignity remained unaltered despite changes in circumstances.
  
  
  CONCLUSIONS
  While there is a small group of patients for whom dignity remains unaffected by their disease experiences, most patients go through difficult times during which they struggle to maintain or regain their sense of dignity in the face of progressive loss. This longitudinal study offers insight into the dynamics behind this and enhances our understanding of why some patients manage to maintain their sense of dignity while others suffer from a diminished sense of dignity.
authors.affiliation: Department of Public and Occupational Health, EMGO Institute for Health and Care Research, Expertise Center for Palliative Care, VU University Medical Center, Amsterdam, The Netherlands. Electronic address: eol@vumc.nl.
authors.forename: Isis E
authors.initials: IE
authors.lastname: van Gennip
authors.affiliation: Department of Public and Occupational Health, EMGO Institute for Health and Care Research, Expertise Center for Palliative Care, VU University Medical Center, Amsterdam, The Netherlands.
authors.forename: H Roeline W
authors.initials: HR
authors.lastname: Pasman
authors.affiliation: Department of Public and Occupational Health, EMGO Institute for Health and Care Research, Expertise Center for Palliative Care, VU University Medical Center, Amsterdam, The Netherlands.
authors.forename: Mariska G
authors.initials: MG
authors.lastname: Oosterveld-Vlug
authors.affiliation: Department of General Practice, Section of Medical Ethics, Academic Medical Center, Amsterdam, The Netherlands.
authors.forename: Dick L
authors.initials: DL
authors.lastname: Willems
authors.affiliation: Department of Public and Occupational Health, EMGO Institute for Health and Care Research, Expertise Center for Palliative Care, VU University Medical Center, Amsterdam, The Netherlands.
authors.forename: Bregje D
authors.initials: BD
authors.lastname: Onwuteaka-Philipsen
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D002908:Chronic Disease / Q000523:psychology; D003704:Dementia / Q000523:psychology; D018450:Disease Progression; D005260:Female; D006801:Humans; D007406:Interview, Psychological; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000523:psychology; D028723:Personhood
keywords: Cancer; Chronic illness; Dementia; Dignity; Longitudinal study; Qualitative study