RESUMEN

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.

RESUMEN

BACKGROUND: In order to provide responsive, individualised and personalised care, there is now greater engagement with patients, families and carers in designing health services. Out-of-hours care is an essential component of community palliative care. However, little is known about how patients, families and carers have been involved in the planning and design of these services. AIM: To systematically search and review the research literature that reports on how out-of-hours palliative care services are provided in the community and to identify the extent to which the principles of co-design have been used to inform the planning and design of these services. DESIGN: Systematic literature search and review. DATA SOURCES: A systematic search for published research papers from seven databases was conducted in MEDLINE, PsycINFO, Embase, Emcare, PubMed, CINAHL and Web of Science, from January 2010 and December 2021. Reference list searches of included papers were undertaken to source additional relevant literature. A manifest content analysis was used to analyse the data. RESULTS: A total of 77 papers were included. The majority of out-of-hours services in the community were provided by primary care services. The review found little evidence that patients, families or carers were involved in the planning or development of out-of-hours services. CONCLUSION: Incorporating patients, families and carers priorities and preferences in the planning and designing of out-of-hours palliative care service is needed for service providers to deliver care that is more patient-centred. Adopting the principles of co-design may improve how out-of-hours care scan be delivered.

Asunto(s)

RESUMEN

BACKGROUND: Accessing quality palliative care, especially at the end of life is vital in reducing physical and emotional distress and optimising quality of life. For people living in rural and remote Australia, telehealth services can be effective in providing access to after-hours palliative care. OBJECTIVE: To review and map the available evidence on the use of telehealth in providing after-hours palliative care services in rural and remote Australia. METHOD: Scoping review using Arksey and O'Malley methodological framework. Findings are reported in accordance with the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). Scopus, Web of Science, CINAHL Complete, Embase via Ovid, Emcare via Ovid, and Medline via Ovid databases were searched. Peer-reviewed studies and grey literature published in English from 2000 to May 2021 were included. RESULTS: Twelve studies were included in the review. Four main themes were identified: 1) Stakeholder perceptions of service; 2) benefits to services and users; 3) service challenges; and 4) recommendations for service improvement. CONCLUSION: Telehealth can connect patients and families with healthcare professionals and enable patients to continue receiving care at home. However, challenges relating to patients, service, staff skills, and experience need to be overcome to ensure the success and sustainability of this service. Improved communication and care coordination, better access to patient records, and ongoing healthcare professional education are required. IMPLICATIONS: Protocols, comprehensive policy documents and standardized operating procedures to guide healthcare professionals to provide after-hours palliative care is needed. Ongoing education and training for staff is crucial in managing patients' symptoms. Existing service gaps need to be explored and alternative models of after-hours palliative care need to be tested.

Asunto(s)

RESUMEN

INTRODUCTION: After-hours services are essential in ensuring patients with life limiting illness and their caregivers are supported to enable continuity of care. Telehealth is a valuable approach to meeting after-hours support needs of people living with life-limiting illness, their families, and caregivers in rural and remote communities. It is important to explore the provision of after-hours palliative care services using telehealth to understand the reach of these services in rural and remote Australia. A preliminary search of databases failed to reveal any scoping or systematic reviews of telehealth in after-hours palliative care services in rural or remote Australia. AIM: To review and map the available evidence about the use of telehealth in providing after-hours palliative care services in Australian rural and remote communities. METHODS: The proposed scoping review will be conducted using the Arksey and O'Malley methodological framework and in accordance with the Joanna Briggs Institute methodology for scoping reviews. The reporting of the scoping review will be guided by the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). This review will consider research and evaluation of after-hours services using telehealth for palliative care stakeholders in rural and remote Australia. Peer reviewed studies and grey literature published in English from 2000 to May 2021 will be included. Scopus, Web of Science, CINAHL Complete, Embase via Ovid, PsycINFO via Ovid, Emcare via Ovid, Medline via Ovid, and grey literature will be searched for relevant articles. Titles and abstracts will be screened by two independent reviewers for assessment against the inclusion criteria. Data will be extracted and analysed by two reviewers using an adapted data extraction tool and thematic analysis techniques. Diagrams, tables, and summary narratives will be used to map, summarise and thematically group the characteristics of palliative care telehealth services in rural and remote Australia, including stakeholders' perceptions and benefits and challenges of the services.

Asunto(s)

RESUMEN

Caring 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.

Asunto(s)