title: Burden and benefit of psychosocial research at the end of life.
abstract: BACKGROUND
  The impact of psychosocial research participation has not been examined systematically in palliative care settings. Concerns are often raised regarding the potential for distress among terminally ill patients. This is particularly true when death and dying are the focus of research. Therefore, it is important to understand the specific ways psychosocial research could potentially harm or be helpful to participants.
  
  
  OBJECTIVE
  To assess the burden and benefits of participation in psychosocial research addressing end-of-life issues among patients receiving inpatient palliative care.
  
  
  METHODS
  Sixty-eight terminally ill patients with cancer who had an average life expectancy of less than 2 months, were administered a brief self-report questionnaire to assess whether participation in psychosocial research was burdensome and/or beneficial. The specific factors that contributed to their perceptions were also identified.
  
  
  RESULTS
  The majority of patients reported no burden associated with participation (75%) and found the experience as moderately to highly beneficial (68%). Factors most frequently identified as burdensome included the length of the interview (21%), structure of the questionnaires (18%), and difficulty discussing end-of life issues (12%). Although some patients reported some distress while discussing end-of-life issues (19%), few endorsed a high level of distress (6%). Factors most frequently identified as beneficial were the social interaction (75%), sense of contributing to society (57%), and the opportunity to discuss their illness (47%).
  
  
  CONCLUSIONS
  Participants in psychosocial end-of-life research are unlikely to experience significant burden from participation and, in fact, may benefit.
authors.affiliation: Department of Psychiatry and Behavioral Sciences, Memorial Sloan-Kettering Cancer Center, New York, New York 10021, USA. pessinh@mskcc.org
authors.forename: Hayley
authors.initials: H
authors.lastname: Pessin
authors.forename: Michele
authors.initials: M
authors.lastname: Galietta
authors.forename: Christian J
authors.initials: CJ
authors.lastname: Nelson
authors.forename: Robert
authors.initials: R
authors.lastname: Brescia
authors.forename: Barry
authors.initials: B
authors.lastname: Rosenfeld
authors.forename: William
authors.initials: W
authors.lastname: Breitbart
mesh_terms: D000368:Aged; D003863:Depression / Q000209:etiology / Q000517:prevention & control; D005260:Female; D006801:Humans; D017567:Karnofsky Performance Status; D008297:Male; D009369:Neoplasms / Q000523:psychology*; D010166:Palliative Care / Q000523:psychology*; D011581:Psychological Tests; D011594:Psychometrics; D013315:Stress, Psychological / Q000209:etiology* / Q000517:prevention & control*; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000523:psychology*