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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., (© The Author(s) 2015.)

Objectives: To investigate the quality of end-of-life care for patients with metastatic non-small cell lung cancer (NSCLC)., Design and Participants: Retrospective cohort study of patients from first hospitalisation for metastatic disease until death, using hospital, emergency department and death registration data from Victoria, Australia, between 1 July 2003 and 30 June 2010., Main Outcome Measures: Emergency department and hospital use; aggressiveness of care including intensive care and chemotherapy in last 30 days; palliative and supportive care provision; and place of death., Results: Metastatic NSCLC patients underwent limited aggressive treatment such as intensive care (5%) and chemotherapy (< 1%) at the end of life; however, high numbers died in acute hospitals (42%) and 61% had a length of stay of greater than 14 days in the last month of life. Although 62% were referred to palliative care services, this occurred late in the illness. In a logistic regression model adjusted for year of metastasis, age, sex, metastatic site and survival, the odds ratio (OR) of dying in an acute hospital bed compared with death at home or in a hospice unit decreased with receipt of palliative care (OR, 0.25; 95% CI, 0.21-0.30) and multimodality supportive care (OR, 0.65; 95% CI, 0.56-0.75)., Conclusion: Because early palliative care for patients with metastatic NSCLC is recommended, we propose that this group be considered a benchmark of quality end-of-life care. Future work is required to determine appropriate quality-of-care targets in this and other cancer patient cohorts, with particular focus on the timeliness of palliative care engagement.

Background: Palliative care incorporates comprehensive support of family caregivers because many of them experience burden and distress. However, evidence-based support initiatives are few., Purpose: We evaluated a one-to-one psychoeducational intervention aimed at mitigating the distress of caregivers of patients with advanced cancer receiving home-based palliative care. We hypothesised that caregivers would report decreased distress as assessed by the General Health Questionnaire (GHQ)., Method: A randomised controlled trial comparing two versions of the delivery of the intervention (one face-to-face home visit plus telephone calls versus two visits) plus standard care to a control group (standard care only) across four sites in Australia., Results: Recruitment to the one visit condition was 57, the two visit condition 93, and the control 148. We previously reported non-significant changes in distress between times 1 (baseline) and 2 (1-week post-intervention) but significant gains in competence and preparedness. We report here changes in distress between times 1 and 3 (8-week post-death). There was significantly less worsening in distress between times 1 and 3 in the one visit intervention group than in the control group; however, no significant difference was found between the two visit intervention and the control group., Conclusions: These results are consistent with the aim of the intervention, and they support existing evidence demonstrating that relatively short psychoeducational interventions can help family caregivers who are supporting a dying relative. The sustained benefit during the bereavement period may also have positive resource implications, which should be the subject of future inquiry., (© 2014 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.)

Background: 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., Aim: The objective of this study was to prepare caregivers for the role of supporting a patient with advanced cancer receiving home-based palliative care by offering a one-to-one psycho-educational intervention. We hypothesised that primary family caregivers who participated in the intervention would report decreased psychological distress (primary outcome), fewer unmet needs and increased levels of perceived preparedness, competence and positive emotions., Methods: A three-arm randomised controlled trial was conducted comparing two versions of the intervention (one face-to-face visit versus two visits) plus standard care to a control group (standard care) across four sites in Australia., Results: A total of 298 participants were recruited; 148 were in the Control condition, 57 in Intervention 1 (one visit) and 93 in Intervention 2 (two visits). Relative to participants in the control group; the psychological well-being of participants in the intervention condition was improved by a small amount but non-significantly. No significant reduction in unmet needs or improvements in positive aspects of caregiving amongst the intervention group were identified. However, the intervention demonstrated significant improvements in participants' levels of preparedness and competence for Intervention 2., Conclusion/implications: This research adds to accumulating body of evidence demonstrating that relatively short psycho-educational interventions can enable family caregivers to feel more prepared and competent in the role of supporting a dying relative. Further investigation is required to determine the longer term outcomes of such interventions., (Copyright © 2013 John Wiley & Sons, Ltd.)

Background: Many family caregivers of palliative care patients experience poor health and have other unmet needs, requiring health professionals' support. However, there are few evidence-based supportive interventions to address these issues., Purpose: The purpose of this project was to undertake preliminary testing of a psychoeducational group education programme, delivered in an in-patient setting, designed to prepare family caregivers for the role of supporting a relative currently receiving hospital-based palliative care., Methods: A pilot phase was conducted to develop the intervention and explore its utility. Thereafter the single session intervention was delivered in five palliative care units in three states of Australia and its effectiveness was examined using a pre-post design. Outcome variables included caregiver preparedness, competence and unmet needs. Psychological wellbeing was measured in order to determine if there were any deleterious psychological outcomes., Results: One hundred and twenty-six participants completed Time 1 data and 107 (84.9%) completed Time 2 data (post-intervention). There were statistically significant improvements in caregivers' sense of preparedness (p=<.001; effect size (ES) 0.43) and a significant reduction in unmet caregiver needs (p=014; ES 0.22). There was no significant effect on psychological wellbeing and the improvement on competence fell short of statistical significance., Conclusions: This study reinforces the notion that psychoeducational interventions for this population can potentially be applicable, acceptable and effective. However, the number of participants who were recruited and attended each session was fewer than anticipated, resulting in methodological implications. It is recommended that the intervention undergo further empirical inquiry, such as via a controlled trial.

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 patient's 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.

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.