Rachel Zordan

Guidelines for the psychosocial and bereavement support of family caregivers of palliative care patients

BACKGROUND Support for family caregivers, including bereavement follow-up, is a core function of palliative care. Many caregivers acknowledge positive aspects associated with the role; however a considerable proportion will experience poor psychological, social, financial, spiritual, and physical well-being and some will suffer from complicated grief. Many family caregivers have unmet needs and would like more information, preparation, and support to assist them in the caregiving role. There is a shortage of evidence-based strategies to guide health professionals in providing optimal support while the caregiver is providing care and after the patients death. PURPOSE To develop clinical practice guidelines for the psychosocial and bereavement support of family caregivers of palliative care patients. METHODS (1) Literature review; (2) focus groups and structured interviews with key stakeholders within Australia; (3) national and international expert opinion to further develop and refine the guidelines using a modified Delphi process; and (4) endorsement of the guidelines from key palliative care, caregiver, and bereavement organizations (national and international). RESULTS The guidelines were developed for multidisciplinary health care professionals and clinical services commonly involved in caring for adult patients receiving palliative care in a variety of care sites throughout Australia. These consensus-based guidelines have been endorsed key Australian and international organizations. CONCLUSIONS The guidelines may prove valuable for the international palliative care community and for generalist health care providers who occasionally care for palliative care patients. Research is recommended to explore the uptake, implementation, and effectiveness of the guidelines.

Reducing the psychological distress of family caregivers of home based palliative care patients: longer term effects from a randomised controlled trial

Background: Palliative care incorporates comprehensive support of family caregivers because many of them experience burden and distress. However, evidence‐based support initiatives are few.

Reducing the psychological distress of family caregivers of home-based palliative care patients: short-term effects from a randomised controlled trial: Reducing psychological distresses of family caregivers

Palliative care is expected to incorporate comprehensive support for family caregivers given that many caregivers suffer psychological morbidity. However, systematically implemented evidence‐based psychological support initiatives are lacking.

Research priorities associated with family caregivers in palliative care: international perspectives

BACKGROUND AND PURPOSE Reviews of the literature have consistently highlighted significant gaps with regard to research associated with family caregivers within the context of palliative care. We sought to determine a priority driven research agenda for this field of inquiry. METHODS A Web-based survey was sent to 80 people who had previously expressed interest in, or were members of The International Palliative Care Family Carer Research Collaboration (http://centreforpallcare.org/index.php/research/ipcfcrc/). RESULTS Fifty-five participants completed the survey (response rate, 70%) from 12 countries. Priority research areas included: intervention development and testing; underresearched caregiver groups; access to services; unmet needs; bereavement; experience and implications of the caregiver role; and development of assessment tools. Qualitative responses complemented these data and also acknowledged the importance of collaboration and development of a critical mass of researchers focusing in this area in order to progress knowledge. CONCLUSIONS These results reinforce the findings of systematic reviews that have demonstrated a need for the evolution of intervention development focused on improving family caregiver support. However, there are other key areas that also warrant comprehensive attention, including marginalized family caregivers and strategies to assist health professionals to identify family caregivers who have significant psychosocial issues.

The Care of the Very Old in the Last Three Days of Life

BACKGROUND As life expectancy has increased, the age at which people are dying has also increased. There is limited knowledge of the experience of dying of the very old. We sought to examine the last 3 days of life for the very old, dying in a palliative care unit, focusing upon symptom burden and medications prescribed. METHODS A retrospective review of medical records of consecutive patients who died in two inpatient palliative care units. Information collated included demographic and medical information, symptom data, and medications (opioids, benzodiazepines and antipsychotics) administered. Analysis comparing patients aged 80 years and older (cases) and those in the median age range of the treating palliative care units, that is, those aged 50 to 70 years (comparators) were conducted. RESULTS One hundred five cases and 100 comparators were identified. Analysis revealed a significantly shorter length of stay in the cases (13 days) compared to comparators (19 days; p≤0.01).) In the last 3 days, cases received significantly less parenteral morphine equivalents (82.8 versus 170.5 mg, p<0.05), midazolam (12.1 versus 19.1 mg, p<0.05), and lorazepam equivalents (0.9 versus 2.4 mg, p<0.01). Overall, symptom profiles between the groups were similar. IMPLICATIONS The very old appear to have a distinct experience of palliative inpatient care with shorter admissions, and lower requirements for medication. Reasons for lower medication requirements are discussed, and the need for future prospective studies in this area is highlighted. A better understanding of the needs of this population at end of life will enable adequate service planning and improved care.

A pre-test and post-test study of the physical and psychological effects of out-of-home respite care on caregivers of children with life-threatening conditions

Background: Respite services are recommended as an important support for caregivers of children with life-threatening conditions. However, the benefits of respite have not been convincingly demonstrated through quantitative research. Aim: To determine the impact of out-of home respite care on levels of fatigue, psychological adjustment, quality of life and relationship satisfaction among caregivers of children with life-threatening conditions. Design: A mixed-methods, pre-test and post-test study Setting/participants: A consecutive sample of 58 parental caregivers whose children were admitted to a children’s hospice for out-of-home respite over an average of 4 days. Results: Caregivers had below-standard levels of quality of life compared to normative populations. Paired t-tests demonstrated that caregivers’ average psychological adjustment scores significantly improved from pre-respite (mean = 13.9, standard error = 0.71) to post-respite (mean = 10.7, standard error = 1); p < 0.001, 95% confidence interval: 1.25–5.11). Furthermore, caregivers’ average fatigue scores significantly improved from pre-respite (mean = 14.3, standard error = 0.85) to post-respite (mean = 10.9, standard error = 1.01; p < 0.001, 95% confidence interval: 1.69–7.94), and caregivers’ average mental health quality of life scores significantly improved from pre-respite (mean = 44.2, standard error = 1.8) to post-respite (mean = 49.1, standard error = 1.6; p < 0.01, 95% confidence interval: −9.56 to 0.36). Qualitative data showed caregivers sought respite for relief from intensive care provision and believed this was essential to their well-being. Conclusion: Findings indicate the effectiveness of out-of-home respite care in improving the fatigue and psychological adjustment of caregivers of children with life-threatening conditions. Study outcomes inform service provision and future research efforts in paediatric palliative care.

Hospitalisation of high-care residents of aged care facilities: are goals of care discussed?

Residents of residential aged care facilities (RACF) are commonly hospitalised towards the end of life. Determining the hospitalisation experiences, including the discussion of goals of treatment, is essential to best plan care including planning for end‐of‐life care for this population.

Prevalence and predictors of fatigue in haemo‐oncological patients

Fatigue is a common symptom in patients with advanced malignancy, and has been associated with both physiological and psychological factors in patients with solid tumours.

Dr Google in the ED: searching for online health information by adult emergency department patients

Objective: To determine the prevalence, predictors, and characteristics of health‐related internet searches by adult emergency department (ED) patients; to examine the effect of searching on the doctor–patient relationship and treatment compliance.