The care of people with life‐limiting illnesses is increasingly moving away from an acute setting into the community. Thus, the caregiver role is growing in significance and complexity. The importance of preparing and supporting family caregivers is well established; however, less is known about the impact of rurality on preparedness and how preparedness shapes the caregiving continuum including bereavement. The aim of this study, conducted in 2017, was to explore how bereaved rural family palliative carers described their preparedness for caregiving. Interpretative phenomenological analysis was employed following semi‐structured interviews with four women and six men (N = 10, aged 55–87 years). Participants were recruited voluntarily through past engagement with a Regional Specialist Palliative Care Consultancy Service in Australia. The experiences of caregivers illustrated a lack of preparedness for the role and were characterised by four major themes: Into the unknown, Into the battle, Into the void and Into the good. The unknown was associated with a lack of knowledge and skills, fear, prognostic communication, exclusion, emotional distress and grief experience. Battles were experienced in a number of ways: intrapsychically (existing within the mind), through role conflict and identity; interpersonally with the patient, clinician and family; and systematically (against health, financial and legal systems). The void was felt during isolation in caregiving, in relinquishing the role, in bereavement and in feeling abandoned by service providers. Positive experiences, such as being valued, included and connected to supports, and the fostering of closer relationships and deeper meaning, occurred less frequently but temporarily buffered against negative aspects. Implications from this study for policy and practice centre on the frequent, purposeful and genuine engagement of caregivers. Services and clinicians are encouraged to enhance communication practices, promote meaningful inclusion, address access issues and enhance support at role relinquishment.
Background: Without objective screening for risk of death, the palliative care needs of older patients near the end of life may be unrecognised and unmet. Aim: This study aimed to estimate the usefulness of the Criteria for Screening and Triaging to Appropriate aLternative care (CriSTAL) tool in determining older patients’ risk of death within 3-months after initial hospital admission. Methods: A prospective cohort study of 235 patients aged 70+ years, who presented to two rural emergency departments in two adjacent Australian states, was utilised. The ‘risk of death’ of each patient was screened with the CriSTAL prognostic tool. Their 3-month follow-up outcomes were assessed through telephone interviews and a clinical record review. Findings: A CriSTAL cut-off score of more than 7 yielded a sensitivity of 80.7% and specificity of 70.81% for a 3-month risk of death. Palliative care services were only used by 31% of the deceased in their last trimester of life. Conclusion: Prognostic tools provide a viable means of identifying individuals with a poor prognosis. Identification can trigger an earlier referral to palliative care, which will benefit the patient's wellbeing and quality of life.
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