What is the best way to support patients undergoing radiation therapy?

This editorial explores ways of providing support to patients undergoing radiation therapy. We highlight the importance of preparing patients and their families for radiation therapy. We also emphasise that patients with children need to be supported and be given advice on communicating with their children. Survivorship and treatment follow-up are also discussed

From consultation to participation in public health research: reflections on a community-based research partnership

Background - Road traffic crashes and their outcomes are substantial global public health issues and public health initiatives are increasingly involving relevant community members in order to create sustainable change. This paper describes an applied research project utilizing participatory methods to establish a road trauma support service in Western Australia and reflects on the extent of participation in the community-based research partnership. Community-based participatory research (CBPR) provided the basis for the research project conducted in partnership with 34 government and non-government agency representatives and people affected personally by road trauma and which resulted in 22 recommendations for establishing the service. Findings - Attempts to position the group as co-researchers highlighted the dynamic interplay of factors that hinder and enable participation in participatory research. Barriers to participation within the research process included the limited time and funds, reluctance to share authorship, and a lack of clarity regarding roles and processes. Factors that enabled participation were the recognition of each member’s expertise, providing different forms and methods of communication, and the reimbursement of costs according to role. Discussion - In May 2012, the Government of Western Australia announced it would fund the recommendations and Road Trauma Support Western Australia was launched in November 2013. Notwithstanding this successful outcome, there were varied experiences of participation in the research process, and this was despite the use of a research methodology that is by definition participatory, with explicit and embedded participatory structures and processes. The research project shows that elements of CBPR can be incorporated into public health research, even in projects with externally-imposed time and budget constraints

The effect of caregiving on bereavement outcome: Study protocol for a longitudinal, prospective study

Background: The aim of the current study is to determine the effects of caregiving on bereavement outcome. The study will address two important gaps in the research literature: (1) the relationship between pre-death distress and post-death outcomes and (2) family caregivers' anticipation and preparation of the death of the person for whom they care. Methods/Design: We will conduct a longitudinal, prospective study of adult family caregivers of adult patients receiving palliative care. All participants will complete a questionnaire administered at four points - approximately 4-8 weeks prior to bereavement, and 3-4, 6-7, and 9-10 months post-bereavement. The questionnaire includes measures of multidimensional caregiving experiences (strain, distress, positive appraisals, and family wellbeing), caregiver prolonged grief, multidimensional grief responses (despair, panic behaviour, blame and anger, detachment, disorganisation, and personal growth), prolonged grief, quality of life, general health (psychological and physical) and demographics. These caregivers' data will be compared to a comparison group matched for age, sex, and postcode, allowing the caregivers' general health and quality of life to be compared to a normative group. The caregivers will also be invited to participate in a semi-structured interview about preparing for impending bereavement. Discussion: This is the first study to address the methodological limitations in the current literature and will likely make a significant contribution to both our understanding of caregiving on bereavement outcome and to bereavement care offered in palliative and hospice settings. © 2015 Breen et al.; licensee BioMed Central

Establishing a Sustainable Road Trauma Support Service in Western Australia

Despite the clear psychosocial ramifications of road traffic crashes, there is no dedicated road trauma support service in Western Australia (WA). A road trauma support service in WA is urgently required to provide sustainable, coordinated, timely, and appropriate peer support and professional therapeutic interventions for road trauma victims, family members, witnesses, and for others who are adversely affected by road trauma. The objective of this paper is to describe an investigation of the mechanisms and costs associated with establishing a sustainable road trauma support service in WA. The study was guided by a stakeholder reference group comprising representatives from government and non-government agencies as well as community members affected by road trauma. Existing road trauma supports and services available in other Australian jurisdictions were examined to inform the establishment of a road trauma support service in WA. Three of these services were then visited by the first author to see firsthand the premises and resources and to talk to staff about each service. The investigation resulted in 22 recommendations outlining a ‘one-stop-shop’ that meets the varied needs of people in WA who are affected by road trauma

A scoping review of bereavement risk assessment measures: Implications for palliative care

© The Author(s) 2015. Background: Palliative care standards and policies recommend that bereavement support be provided to family caregivers, yet uncertainty surrounds whether support currently offered by palliative care services throughout developed countries meets caregiver needs. The public health model of bereavement support, which aligns bereavement support needs with intervention, may address this gap between policy and practice. Aim: The aim was to review the literature to identify bereavement risk assessment measures appropriate for different points in the caring and bereavement trajectories, evaluate their psychometric properties and assess feasibility for use in palliative care. Design: A scoping review was systematically undertaken following Arksey and O'Malley's methodological framework. Data sources: PsycINFO, CINAHL, PubMed and Cochrane Reviews databases, as well as grey literature including Internet searches of Google, World Health Organization, CareSearch, the Grey Literature Report and OAIster were searched. Bereavement organisations and palliative care websites, reference lists in obtained articles and grief and bereavement handbooks were also scrutinised. Results: Of 3142 records screened, 356 records yielded 70 grief measures. In all, 19 measures published between 1982 and 2014 were identified for inclusion in this review, and categorised for use with family caregivers at three points in time - before the patient's death (n = 5), in the period following the death (n = 10) and for screening of prolonged or complex grief (n = 4). The majority had acceptable psychometric properties; feasibility for use in palliative care varied substantially. Conclusion: This review is an important preliminary step in improving the assessment of bereavement risk and, consequently, better bereavement outcomes for palliative care family caregivers

Feasibility, Acceptability, and Potential Effectiveness of Dignity Therapy for People with Motor Neurone Disease

Background: Motor neurone disease (MND) practice guidelines suggest developing interventions that will promote hope, meaning, and dignity to alleviate psychological distress, but very little research has been done. This study begins to address this need by exploring the use of dignity therapy with people with MND. Dignity therapy is a brief psychotherapy that promotes hope, meaning and dignity, and enhances the end of life for people with advanced cancer. The aims of this study are to assess the feasibility, acceptability, and potential effectiveness of dignity therapy for people with MND. Methods/design: This cross-sectional feasibility study used a one-group pre-test post-test design with 29 people diagnosed with MND. Study participants completed the following self-report questionnaires: Herth Hope Index, FACIT-sp, Patient Dignity Inventory, ALS Assessment Questionnaire, ALS Cognitive Behavioural Screen, and a demographic and health history questionnaire. Acceptability was measured with a 25-item feedback questionnaire. Feasibility was assessed by examining the length of time taken to complete dignity therapy and how symptoms common in MND affected the intervention. Generalised linear mixed models and reliable change scores were used to analyse the data.Results: There were no significant pre-test post-test changes for hopefulness, spirituality or dignity on the group level, but there were changes in hopefulness on the individual level. The results of the feedback questionnaire indicates dignity therapy is highly acceptable to people with MND, who report benefits similar to those in the international randomised controlled trial on dignity therapy, a population who primarily had end-stage cancer. Benefits include better family relationships, improved sense of self and greater acceptance. Dignity therapy with people with MND is feasible if the therapist can overcome time and communication difficulties. Conclusions: Dignity therapy for people with MND is feasible and acceptable. Further research is warranted to explore its ability to diminish distress

Field testing a protocol to facilitate the involvement of pharmacists in community based palliative care

Most palliative care patients and their carers will interact with a pharmacist, particularly when obtaining medication during their illness. Pharmacists working in the community do not have a formal role in the care of patients who are receiving palliative care. Objective: The aim of this study was to field test a protocol to coordinate a formal medication management review of palliative care patients by an accredited pharmacist. Methods: Eligible patients resident in the community were recruited by a palliative care nurse. Patients consented to a formal review of their medication by an accredited pharmacist. The request for the review was endorsed by the patient’s doctor. One accredited pharmacist, from a list of 18 accredited pharmacists who had attended a short course on palliative care and who had access to an experienced palliative care pharmacist, reviewed the medication at the patient’s residence. The pharmacist then reported their recommendations to a project manager who passed them back to the doctor. Patients and relatives were able to consult the pharmacist if they required further help for a number of weeks post-review.Results: Forty patients and 13 pharmacists participated over a four month period. Between two and 30 days elapsed from patient consent to the pharmacist’s report to the referring doctor (M = 10.6 days, SD = 6.0). Thirteen pharmacists conducted 0–9 reviews each and made 145 recommendations. Only three pharmacists recorded post-review patient interactions in diaries. Out of all interactions that took place between these three pharmacists and corresponding patients, almost half were initiated by the pharmacist. These were used mainly to share or request information, although two resulted in medication changes. Experts in palliative care and the patients were generally very positive about the results of the medication review. Conclusions: An innovation that builds on the existing system for Medication Management Review to engage with patients in palliative care is valuable. This project was an important first step in developing a suitable protocol. In this case the protocol was only partially successful although the project contributes to existing knowledge and understanding in this area

Bridging the gaps in palliative care bereavement support: An international perspective

A review of palliative care policies and bereavement support practices in the United States, Canada, United Kingdom, Australia, and Japan demonstrated 4 challenges: questions over providing universal versus targeted support; a lack of clear evidence driving service delivery; informal or no risk assessment; and limited or no evaluation of services. Bridging the gaps between the policy and practice of palliative care bereavement support requires acknowledging the challenges of medical and public health models, improving bereavement need assessment processes, enhancing the role of primary care providers, and extending research to provide an evidence-base for interventions

A pilot randomised controlled trial of metacognitive therapy for prolonged grief

Objectives: Prolonged grief disorder is associated with significant distress and impairment and thus efforts to improve treatments are essential. The present pilot study tested the efficacy and feasibility of group Metacognitive Grief Therapy (MCGT) designed specifically for prolonged grief symptomatology to reduce the psychological distress and impaired function resulting from bereavement. Design/participants: Twenty-two bereaved adult participants with prolonged grief symptomatology were randomised to a wait-list control (n=10) or an intervention condition (n=12) with a 3-month and 6-month follow-up. The wait-list control group was offered treatment after the post-test assessment. Intervention: Participants attended six group MCGT sessions that ran for 2 hours per week. Outcome measures: A primary outcome measure of prolonged grief symptomatology and secondary outcome measures of depression, anxiety, rumination, metacognitive beliefs and quality of life were taken pretreatment and post-treatment for both groups and at the 3-month and 6-month follow-up for the intervention group. A Generalised Linear Mixed Model was used to assess treatment efficacy. Results: Post-treatment intent-to-treat analyses showed MCGT reduced prolonged grief symptomatology (Cohen's d=1.7), depression (d=1.3), anxiety (d=0.8), stress (d=1.0), rumination (d=0.9) and increased quality of life (d=0.6), and these effects were maintained at the 3-month and 6-month follow-ups. No prepost between-group differences were found in metacognitive beliefs. However, a large significant effect was identified at the 3-month and 6-month follow-ups (d=1.0). Conclusion: The results show promise for the utility of group MCGT for reducing psychological distress and promoting quality of life. Additionally, the results underscore the need for a full randomised controlled trial of group MCGT, which may be an important addition to the treatment armamentarium available to support people with prolonged grief

Unmet psychological and practical needs of patients with cancer in rural and remote areas of Western Australia

The financial and psychological impacts of cancer treatment on patients can be severe. Practical issues, such as childcare, medical supplies and obtaining ‘home help’ can impose financial strain on patients and their families, and this is often exacerbated by a simultaneous loss of income if a patient is unable to continue employment during treatment, or if family members become full-time carers. These financial difficulties are often more severe for patients from rural regions because cancer services tend to be concentrated in metropolitan areas, requiring rural patients to relocate or undertake lengthy, frequent commutes to access treatment. The needs of rural cancer patients may differ from and exceed those of metropolitan cancer patients. Because of this, it is important to assess the needs of rural and metropolitan populations to develop appropriate, tailored supportive-care interventions. This article compares the unmet supportive-care needs of rural/remote with metropolitan cancer patients in Western Australia (WA), a large and sparsely populated Australian state with a substantial rural and remote population. This article is part of a larger program of research assessing the supportive-care needs of WA cancer patients.Methods: Participants were identified through the Western Australian Cancer Registry (WACR) and considered eligible if diagnosed with any type of cancer between 6 months and 2 years previously. A random sample of 2079 potential participants was generated, structured to include all cancer types and geographical areas, and with both sexes randomised within these groups. Following confirmation and exclusion of deceased patients and those patients excluded at the treating doctor’s request, 1770 patients were contacted. Participants were asked to complete a demographic questionnaire and the Supportive Care Needs Survey Long Form (SCNS-59). Data from participants who completed and returned both questionnaires were analysed using descriptive statistics and χ2 tests; and any missing data were addressed through imputation.Results: Eight hundred and twenty-nine participants (47% response) completed the SCNS-LF59 and 786 (94.8%) completed both questionnaires. Of the 786 respondents, 234 (30%) were from rural areas and 169 (22%) were from remote areas. Among the 15 items with the highest frequency for ‘some needs’ on the survey, participant needs did not vary by geographical location, with no significant differences found for any of the 15 items. The item for which the greatest, albeit non-significant (p = 0.12) difference was seen, was ‘concern about financial situation’. The differences among all other items were not significant (p-values from 0.28 to 0.96). Furthermore, the proportion of participants reporting ‘moderate to high need’ on these items also did not differ significantly across geographical populations (p-values from 0.13 to 0.91).Conclusions: The lack of discrepancy between rural, remote and metropolitan cancer patients’ unmet needs provides a positive message regarding the state of WA cancer services and the level of support provided to rural and remote WA residents. Future research should also assess the unmet needs of rural and remote carers and families in comparison with metropolitan carers and families, to ensure that services are well-equipped to meet the needs of all individuals involved in a patient’s cancer journey