1 40 1 Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month Backlog URL Address <a href="http://doi.org/10.1089/jpm.2007.9923" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2007.9923</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Burden and benefit of psychosocial research at the end of life Publisher An entity responsible for making the resource available Journal Of Palliative Medicine Date A point or period of time associated with an event in the lifecycle of the resource 2008 Creator An entity primarily responsible for making the resource Pessin H; Galietta M; Nelson CJ; Brescia R; Rosenfeld B; Breitbart W Description An account of the resource 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. DESIGN: 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. 2008 Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1089/jpm.2007.9923" target="_blank" rel="noreferrer">10.1089/jpm.2007.9923</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). Type The nature or genre of the resource Journal Article 2008 Backlog Breitbart W Brescia R Galietta M Journal Article Journal of Palliative Medicine Nelson CJ Pessin H Rosenfeld B