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

Abstract

Introduction 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.

Palliative and End-of-Life Care in the Home in Regional/Rural Victoria, Australia: The Role and Lived Experience of Primary Carers

“…In addition, trustworthiness was assessed, incorporating the concepts of credibility, dependability, confirmability, and transferability (Lincoln & Guba, 1985). A systematic review of the literature examining the needs of Australian carers (Miller & Porter, 2021) was undertaken which validated and supported the outcomes of this study proving credibility and consistency of data. Dependability was achieved in the form of field notes forming an audit trail.…”

“…This is due to many factors, including greater demand for services due to an aging population, exacerbated by a structural shortage of G.P.s, supporting specialists, an experienced workforce, and the cost of service provision (Holloway et al, 2020; Weinhold & Gurtner, 2014). For those patients and carers living in regional and rural areas requiring palliative care for complex needs, a shortage of specialist palliative care practitioners requires travel to a major city, adding to caregiver burden and hardships (Miller & Porter, 2021). Poor coordination between services also disrupts the smooth transition between in-patient and community services within regional and rural areas (Department of Health [DOH], 2018; National Health & Medical Research Council, 2011).…”

“…While urban studies have explored the needs of carers providing palliative and end-of-life care in their homes, little has been published about the role and experiences of carers in regional/rural areas of Australia, specifically West and Central Gippsland in Victoria, in the last ten years. It is important to understand current and bereaved carers’ experiences in all regions of Australia to inform policy development, service provision, and access amidst a growing demand from an aging population and funding challenges (DOH, 2018; Miller & Porter, 2021). Therefore, the study aimed to explore the role and lived experience of primary carers providing palliative and end-of-life care in the home in regional/rural Victoria, the supports they utilized, and what the carers believed were their current and future needs.…”

Experience and acceptability of a carer‐focussed intervention in acute oncology settings: A qualitative study of people with advanced cancer and their carers

“…International policy recommends support for cancer carers throughout the discharge planning process (Carers UK, 2021; Victorian Government, 2018, 2020). However, carers describe being largely unsupported, navigating distress and uncertainty (Guo et al, 2022; Isenberg et al, 2021; Marston et al, 2015; Miller & Porter, 2021; Plank et al, 2012; Wang et al, 2018). Carers report inadequate access to information and support related to the illness, treatment, discharge planning, and practical aspects of caring (Wang et al, 2018).…”

The Physical Hospital Environment and Its Effects on Palliative Patients and Their Families: A Qualitative Meta-Synthesis

“…Despite the initial preference for people to die at home and receive end-of-life care, more than half the population will die in hospital (Broad et al, 2013). The reasons for this are many but may include lack of community supports or engagement, the family not coping (physically, emotionally, financially), patients preferring the familiarity and safety of the hospital, or to separate the family home from the place of death (Gott et al, 2013; Miller & Porter, 2021; Miller et al, 2021; Reyniers et al, 2014). Since a hospital death is more likely, it is essential that palliative and end-of-life care is patient and family-centered, meeting their physical, psychosocial, and spiritual needs (World Health Organization, 2018) within the hospital environment.…”