Literature DB >> 21306232

Constructing understandings of end-of-life care in Europe: a qualitative study involving cognitive interviewing with implications for cross-national surveys.

Barbara A Daveson1, Dorothee Bechinger-English, Claudia Bausewein, Steffan T Simon, Richard Harding, Irene J Higginson, Barbara Gomes On Behalf Of Prisma.   

Abstract

BACKGROUND: Although national findings regarding people's end-of-life care (EoLC) preferences and priorities are available within Europe, a lack of research coordination between countries has meant that cross-national understandings of EoLC remain unknown.
PURPOSE: To (1) identify English and German understandings of EoLC within the context of an EoLC survey, and (2) to synthesise these understandings to aid interpretation of results from a cross-national survey.
METHODS: An inductive and interpretive two-phased sequential design involving (1) qualitative analysis of cognitive interview data from 15 English and 15 German respondents to develop country-related categories, and (2) qualitative synthesis to identify a conceptually coherent understanding of EoLC.
RESULTS: Open and axial coding resulted in six English and six German categories. Commonalities included (a) the importance of social and relational dimensions, (b) dynamic decision making comprising uncertainty, (c) a valuing of life's quality and quantity, and (d) expectations for holistic care involving autonomy, choice, and timely information from trusted professionals. Differences involved attention to practical matters, and thoughts about prolongation of life, preferred place of death, and the role of media and context. Synthesis resulted in four concepts with underlying coherence: expectations of a high standard of EoLC involving autonomy, choice, and context; evolving decision making amid anticipated change; thoughts about living and existing; and worldviews shaping EoLC preferences in real and hypothetical scenarios.
CONCLUSION: Individual and country-related diversity must be remembered when quantifying EoLC understandings. Inductive-interpretive analysis of cognitive interview data aids interpretation of survey findings. Cross-national research coordination and qualitative synthesis assists EoLC in Europe.

Entities:  

Mesh:

Year:  2011        PMID: 21306232      PMCID: PMC3118780          DOI: 10.1089/jpm.2010.0348

Source DB:  PubMed          Journal:  J Palliat Med        ISSN: 1557-7740            Impact factor:   2.947


  11 in total

1.  Rationale and standards for the systematic review of qualitative literature in health services research.

Authors:  J Popay; A Rogers; G Williams
Journal:  Qual Health Res       Date:  1998-05

2.  A matter of definition--key elements identified in a discourse analysis of definitions of palliative care.

Authors:  T Pastrana; S Jünger; C Ostgathe; F Elsner; L Radbruch
Journal:  Palliat Med       Date:  2008-04       Impact factor: 4.762

3.  PRISMA: a pan-European co-ordinating action to advance the science in end-of-life cancer care.

Authors:  Richard Harding; Irene J Higginson
Journal:  Eur J Cancer       Date:  2010-02-23       Impact factor: 9.162

4.  Attitudes toward disease and prognosis disclosure and decision making for terminally ill patients in Japan, based on a nationwide random sampling survey of the general population and medical practitioners.

Authors:  Mitsunori Miyashita; Shuji Hashimoto; Masako Kawa; Yasuo Shima; Hiromi Kawagoe; Tsuneto Hase; Yae Shinjo; Keiichi Suemasu
Journal:  Palliat Support Care       Date:  2006-12

5.  Place of care in advanced cancer: a qualitative systematic literature review of patient preferences.

Authors:  I J Higginson; G J Sen-Gupta
Journal:  J Palliat Med       Date:  2000       Impact factor: 2.947

6.  Women's decision-making needs regarding place of care at end of life.

Authors:  Mary Ann Murray; Annette M O'Connor; Valerie Fiset; Raymond Viola
Journal:  J Palliat Care       Date:  2003       Impact factor: 2.250

Review 7.  A systematic review of prognostic/end-of-life communication with adults in the advanced stages of a life-limiting illness: patient/caregiver preferences for the content, style, and timing of information.

Authors:  Sharon M Parker; Josephine M Clayton; Karen Hancock; Sharon Walder; Phyllis N Butow; Sue Carrick; David Currow; Davina Ghersi; Paul Glare; Rebecca Hagerty; Martin H N Tattersall
Journal:  J Pain Symptom Manage       Date:  2007-05-25       Impact factor: 3.612

8.  Terminal cancer care and patients' preference for place of death: a prospective study.

Authors:  J Townsend; A O Frank; D Fermont; S Dyer; O Karran; A Walgrove; M Piper
Journal:  BMJ       Date:  1990-09-01

9.  The value of cognitive interviewing techniques in palliative care research.

Authors:  Fliss E M Murtagh; Julia M Addington-Hall; Irene J Higginson
Journal:  Palliat Med       Date:  2007-03       Impact factor: 4.762

Review 10.  Feeling like a burden to others: a systematic review focusing on the end of life.

Authors:  Christine J McPherson; Keith G Wilson; Mary Ann Murray
Journal:  Palliat Med       Date:  2007-03       Impact factor: 4.762

View more
  5 in total

1.  Choosing care homes as the least preferred place to die: a cross-national survey of public preferences in seven European countries.

Authors:  Natalia Calanzani; Katrien Moens; Joachim Cohen; Irene J Higginson; Richard Harding; Luc Deliens; Franco Toscani; Pedro L Ferreira; Claudia Bausewein; Barbara A Daveson; Marjolein Gysels; Lucas Ceulemans; Barbara Gomes
Journal:  BMC Palliat Care       Date:  2014-10-23       Impact factor: 3.234

2.  Development of an intervention to support patients and clinicians with advanced lung cancer when considering systematic anticancer therapy: protocol for the PACT study.

Authors:  Despina Anagnostou; Stephanie Sivell; Simon Noble; Jason Lester; Anthony Byrne; Catherine Sampson; Mirella Longo; Annmarie Nelson
Journal:  BMJ Open       Date:  2017-07-12       Impact factor: 2.692

3.  Preference for initiation of end-of-life care discussion in Indonesia: a quantitative study.

Authors:  Venita Eng; Victoria Hewitt; Aria Kekalih
Journal:  BMC Palliat Care       Date:  2022-01-06       Impact factor: 3.234

4.  'Burden to others' as a public concern in advanced cancer: a comparative survey in seven European countries.

Authors:  Claudia Bausewein; Natalia Calanzani; Barbara A Daveson; Steffen T Simon; Pedro L Ferreira; Irene J Higginson; Dorothee Bechinger-English; Luc Deliens; Marjolein Gysels; Franco Toscani; Lucas Ceulemans; Richard Harding; Barbara Gomes
Journal:  BMC Cancer       Date:  2013-03-08       Impact factor: 4.430

5.  Learning from the public: citizens describe the need to improve end-of-life care access, provision and recognition across Europe.

Authors:  Barbara A Daveson; Juan P Alonso; Natalia Calanzani; Christina Ramsenthaler; Marjolein Gysels; Barbara Antunes; Katrien Moens; Esther I Groeneveld; Gwenda Albers; Silvia Finetti; Francesca Pettenati; Claudia Bausewein; Irene J Higginson; Richard Harding; Luc Deliens; Franco Toscani; Pedro L Ferreira; Lucas Ceulemans; Barbara Gomes
Journal:  Eur J Public Health       Date:  2013-03-13       Impact factor: 3.367

  5 in total

北京卡尤迪生物科技股份有限公司 © 2022-2023.