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BackgroundHealthcare 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.ObjectivesTo 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.DesignSystematic review and meta-synthesis.Data sourcesCINAHL, Embase, Medline, PsycINFO, ProQuest Dissertations and Theses.Review methodsA 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.ResultsThe 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.ConclusionsIn 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.

AbstractCaring for families of the terminally ill is an important aspect of nursing care as nurses are considered the main health care professionals who are closest to families. This paper describes the experience of seven registered nurses caring for families of the terminally ill in Western Australia. Five of the nurses worked in an acute area at a public hospital; the other two nurses worked at long term care settings at a private hospital. Descriptive phenomenology as described by Husserl (1970) was used to describe and explore nurses' lived experience. Data were collected through in depth interviews and analysed using the Colaizzi method. Four major themes are reported in this paper: 1) walking a journey together; 2) dealing with intense emotions; 3) working as a team; and 4) balancing the dimension of care. Nurses' lived experiences of caring for families of terminally ill patients revealed that nurses are confronted by families' emotions and at the same time needed to manage their own emotions. The findings further indicated that nurses play a significant role in caring for families of the terminally ill. The family's fear of losing their loved ones often resulted in conflicts, which required extra time from nurses. Moreover, some of the major barriers identified were time constraints and excessive workloads. Finally, some implications of the findings for registered nurses are discussed.