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Understanding the Needs of Australian Carers of Adults Receiving Palliative Care in the Home: A Systematic Review of the Literature.

ABSTRACT: Caring for someone at home requiring palliative care is an ominous task. Unless the current support systems are better utilised and improved to meet the needs of those carers, the demand for acute hospital admissions will increase as the Australian population ages. The aim of this review was to examine the needs of unpaid carers who were caring for adults receiving palliative care in their home in Australia. Methods: A systematic review of the literature was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) Guidelines between 2008-2020. Results: Only Australian papers were selected due to the intent to understand carers' needs in the Australian context and 17 papers made up the final data set. Four themes emerged: 1) Perceived factors influencing caregiving; 2) Perceived impact and responses to caregiving; 3) Communication and information needs; and 4) Perceptions of current palliative support services and barriers to uptake. Conclusion: Carers reported satisfaction and positive outcomes and also expressed feeling unprepared, unrecognised, stressed and exhausted.

SUBMITTER: Miller EM

PROVIDER: S-EPMC7925947 | biostudies-literature | 2021 Jan-Dec

REPOSITORIES: biostudies-literature

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Understanding the Needs of Australian Carers of Adults Receiving Palliative Care in the Home: A Systematic Review of the Literature.

Miller Elizabeth M EM Porter Joanne E JE

SAGE open nursing 20210101

Caring for someone at home requiring palliative care is an ominous task. Unless the current support systems are better utilised and improved to meet the needs of those carers, the demand for acute hospital admissions will increase as the Australian population ages. The aim of this review was to examine the needs of unpaid carers who were caring for adults receiving palliative care in their home in Australia. <b>Methods:</b> A systematic review of the literature was conducted in accordance with t ...[more]

PMID: 33718605

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Project description:ObjectivesTo investigate the experiential impact of the COVID-19 pandemic on patients with non-COVID, life-threatening disease and their family carers.DesignAn interpretative qualitative design informed by phenomenological hermeneutics and based on data from in-depth interviews, performed between June and September 2020.SettingPatients receiving specialised palliative home care and their family carers living in Sweden.Participants22 patients (male/female 11/11) and 17 carers (male/female 5/12) aged 50 years and older. All the patients received specialised palliative home care and most were diagnosed with cancer.Inclusion criteriaaged 18 years or older, diagnosed with an incurable life-threatening, non-COVID disease, sufficient strength to participate and capacity to provide informed consent. Participants were selected through a combination of convenient and consecutive sampling.ResultsThe significance of the pandemic for both patients and carers showed a continuum from being minimally affected in comparison to the severe underlying disease to living in isolation with constant fear of becoming infected and falling ill with COVID-19, which some likened to torture.The imposed restrictions on social contact due to the pandemic were particularly palpable for this group of people with a non-COVID-19, life-limiting condition, as it was said to steal valuable moments of time that had already been measured.Most patients and carers found access to specialised palliative home care was maintained despite the pandemic. This care was of paramount importance for their sense of security and was often their sole visiting social contact.ConclusionsIn the pandemic situation, highly accessible support from healthcare and social care at home is particularly important to create security for both patients and carers. Thus, to provide appropriate support, it is important for healthcare and social care personnel to be aware of the great diversity of reactions patients in palliative care and their carers may have to a pandemic threat.

Project description:BackgroundAlthough meta-analyses have demonstrated that physical activity can positively impact quality of life outcomes in early stage cancer patients, it is not yet known whether these benefits can be extended to patients with advanced cancer. In a previous pilot survey of patients with advanced cancer with a median survival of 104 days, participants felt willing and able to participate in a physical activity intervention, and reported a strong preference for walking and home-based programming. Here, we report on the initial development and feasibility of a home-based functional walking program in patients with advanced cancer receiving palliative care.MethodsNine adult patients were recruited from outpatient palliative care clinics and palliative home care. A pilot intervention trial was conducted over a 6-week period. The McGill Quality of Life Questionnaire (MQOL), Late Life Function and Disability Instrument (LLFDI), Edmonton Symptom Assessment System (ESAS), Seniors Fitness Test, four-test balance scale, and grip strength, were performed pre- and post-intervention. Participants wore activPAL™ accelerometers to monitor ambulatory activity levels.ResultsOf the nine recruited participants, three participants dropped out prior to baseline testing due to hospital admission and feeling overwhelmed, and three participants dropped out during the intervention due to severe symptoms. Only three participants completed the intervention program, pre- and post-intervention assessments: two reported improvements in total MQOL scores, yet all three shared an overall trend towards worsening symptom and total fatigue scores post-intervention. Two participants passed away within 90 days of completing the intervention.ConclusionsThis case series demonstrates the challenges of a physical activity intervention in patients with advanced cancer receiving palliative care. Further feasibility research is required in this patient population.Trial registrationThis study is registered under ClinicalTrials.gov as NCT00438620.

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Understanding the Needs of Australian Carers of Adults Receiving Palliative Care in the Home: A Systematic Review of the Literature.

Publications

Understanding the Needs of Australian Carers of Adults Receiving Palliative Care in the Home: A Systematic Review of the Literature.

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