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Voice of persons with a life-limiting illness in conversation with healthcare professionals: systematic review and meta-synthesis
  1. Nqobile Sikhosana1,
  2. Dean Whitehead2,
  3. Lorna Moxham3,
  4. Sara Karacsony4,
  5. Pathmavathy Namasivayam4 and
  6. Ritin Fernandez5
  1. 1 School of Nursing | Faculty of Science, Medicine, and Health, University of Wollongong Faculty of Science Medicine and Health, Wollongong, New South Wales, Australia
  2. 2 School of Nursing and Midwifery, Federation University Australia, Ballarat, Victoria, Australia
  3. 3 Graduate Research School, University of Wollongong Faculty of Science Medicine and Health, Wollongong, New South Wales, Australia
  4. 4 School of Nursing and Midwifery, University of Tasmania College of Health and Medicine, Hobart, Tasmania, Australia
  5. 5 School of Nursing and Midwifery, The University of Newcastle, Callaghan, New South Wales, Australia
  1. Correspondence to Nqobile Sikhosana, School of Nursing | Faculty of Science, Medicine, and Health, University of Wollongong Faculty of Science Medicine and Health, Wollongong, New South Wales, Australia; ns451{at}uowmail.edu.au

Abstract

Background Healthcare organisations are transforming the way care is delivered to people with a life-limiting illness with an increased focus on recognising the voice of the persons experiencing the illness and putting them in the centre of decision-making. However, the clinical practice remains largely based on the views of healthcare professionals and families or carers of the person with the illness.

Objectives To synthesise the best available evidence on the experience of persons living with a life-limiting illness about expressing their voice during communication with healthcare professionals.

Design Systematic review and meta-synthesis.

Data sources CINAHL, Embase, Medline, PsycINFO, ProQuest Dissertations and Theses.

Review methods A structured search was conducted to identify qualitative studies that reported on the experience of persons living with a life-limiting illness. The methodological quality of included studies was assessed using the Joanna Briggs Institute (JBI) critical appraisal checklists. The review was undertaken using the JBI and PRISMA guidelines.

Results The expression of the voice of persons living with a life-limiting illness is influenced by: (1) the uncertain future surrounding illness trajectory and prognosis; (2) what is known from experience, media, family and friends; (3) emotional and psychological factors and (4) control and personal autonomy.

Conclusions In the early stages of a life-limiting illness, the voice of those experiencing the disease is not always audible. Instead, this voice is potentially present but silent and carried and promoted within healthcare professionals’ values of accountability, professionalism, respect, altruism, equality, integrity and morality.

  • Communication
  • End of life care
  • Terminal care
  • Supportive care

Data availability statement

All data relevant to the study are included in the article or uploaded as online supplemental information.

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Data availability statement

All data relevant to the study are included in the article or uploaded as online supplemental information.

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Footnotes

  • Contributors Authorship contribution statement 1. NS: project administration, planning, writing search strategy, methodology, study selection, critical appraisal, data extraction, data synthesis, writing the original draft; responding to reviewers’ comments. 2. DW: participated in planning, the selection of studies, critical appraisal, data extraction and data synthesis; 3. LM: participated in data synthesis and study discussion, 4. SSK: participated in planning, data extraction, and study selection; 5. PN: participated in study selection, data extraction and critical appraisal, 6. RF: participated in the writing of the methods section, critical appraisal and writing results. NS is the author responsible for the overall content as the guarantor and accepts full responsibility for the work and/or the conduct of the study, had access to the data, and controlled the decision to publish.

  • Funding This work has no formal or informal funding

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.