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.
- 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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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.
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