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1.  From consultation to participation in public health research: reflections on a community-based research partnership 
BMC Research Notes  2014;7(1):936.
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.
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.
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.
PMCID: PMC4302106  PMID: 25527083
Participatory action research; Community-based participatory research; Trauma; Injury; Bereavement; Consumer involvement
2.  Community Pharmacists' Attitudes Toward Palliative Care: An Australian Nationwide Survey 
Journal of Palliative Medicine  2013;16(12):1575-1581.
Background: Pharmacists are among the most accessible health care professionals in the community, yet are often not involved in community palliative care teams.
Objective: We investigated community pharmacists' attitudes, beliefs, feelings, and knowledge about palliative care as a first step towards determining how best to facilitate the inclusion of community pharmacists on the palliative care team.
Method: A cross-sectional descriptive survey design was used.
Subjects: Community pharmacists around Australia were invited to participate; 250 completed surveys were returned.
Measurements: A survey was constructed to measure pharmacists' knowledge and experience, emotions and beliefs about palliative care.
Results: Pharmacists were generally positive about providing services and supports for palliative care patients, yet they also reported negative beliefs and emotions about palliative care. In addition, pharmacists had good knowledge of some aspects of palliative care, but misconceptions about other aspects. Pharmacists' beliefs and knowledge about palliative care predicted—and therefore underpinned—a positive attitude towards palliative care and the provision of services and supports for palliative care patients.
Conclusion: The results provide evidence that pharmacists need training and support to facilitate their involvement in providing services and supports for palliative care patients, and highlight areas that training and support initiatives should focus on.
PMCID: PMC3868264  PMID: 24147876
3.  Protocol for the RT Prepare Trial: a multiple-baseline study of radiation therapists delivering education and support to women with breast cancer who are referred for radiotherapy 
BMJ Open  2014;4(8):e006116.
There is limited evidence to guide the preparation of patients for radiotherapy. This paper describes the protocol for an evaluation of a radiation therapist led education intervention delivered to patients with breast cancer in order to reduce psychological distress.
A multiple-baseline study is being used. Usual care data is being collected prior to the start of the intervention at each of three sites. The intervention is delivered by radiation therapists consulting with patients prior to their treatment planning and on the first day of treatment. The intervention focuses on providing sensory and procedural information to patients and reducing pretreatment anxiety. Recruitment is occurring in three states in Australia. Eligible participants are patients who have been referred for radiotherapy to treat breast cancer. 200 patients will be recruited during a usual care phase and, thereafter, 200 patients in the intervention phase. Measures will be collected on four occasions—after meeting with their radiation oncologist, prior to treatment planning, on the first day of treatment and after treatment completion. The primary hypothesis is that patients who receive the radiotherapy preparatory intervention will report a significantly greater decrease in psychological distress from baseline to prior to radiotherapy treatment planning in comparison with the usual care group. Secondary outcome measures include concerns about radiotherapy, patient knowledge of radiotherapy, patient preparedness and quality of life. Patient health system usage and costs will also be measured. Multilevel mixed effects regression models will be applied to test for intervention effects.
Ethics approval has been gained from Curtin University and the three recruiting sites.
Results will be reported in international peer reviewed journals.
Trial registration number
Australian and New Zealand Clinical Trials Registration: ACTRN12611001000998.
PMCID: PMC4139661  PMID: 25138815
4.  Feasibility, Acceptability, and Potential Effectiveness of Dignity Therapy for People with Motor Neurone Disease 
PLoS ONE  2014;9(5):e96888.
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.
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.
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.
Dignity therapy for people with MND is feasible and acceptable. Further research is warranted to explore its ability to diminish distress.
Trial Registration ACTRN12611000410954
PMCID: PMC4016138  PMID: 24816742
5.  General Practitioners’ experiences of bereavement care and their educational support needs: a qualitative study 
BMC Medical Education  2014;14:59.
General Practitioners (GPs) are well-positioned to provide grief support to patients. Most GPs view the provision of bereavement care as an important aspect of their role and the GP is the health professional that many people turn to when they need support. We aimed to explore GPs’ understandings of bereavement care and their education and professional development needs in relation to bereavement care.
An in-depth qualitative design was adopted using a social constructionist approach as our aims were exploratory and applied. Nineteen GPs (12 women and 7 men) living in Western Australia were interviewed; 14 were based in metropolitan Perth and 5 in rural areas. GPs were invited, via a letter, to participate in a semi-structured interview. The interviews occurred within each GP’s workplace or, for the rural GPs, via telephone, and all interviews were digitally audio-recorded and transcribed.
Analysis was based upon constant comparison and began as soon as possible after each interview. The data revealed four tensions or opposing views concerning bereavement and bereavement care. These were (1) whether grief is a standardised versus an individual process, (2) the role of the GP in intervening versus promoting resilience, (3) the GP as a broker of services versus a service provider, and (4) the need for formal education and professional development versus ‘on-the-job’ experiential learning.
GPs have a critical role in exploring distress, including grief. However, changes need to be made to ensure GPs have up-to-date knowledge of contemporary theories and approaches. GPs urgently need education both at the undergraduate and postgraduate degree levels, and in continuing professional development. Otherwise GPs will rely on out-dated theories and constructions of grief, which may be detrimental to patient care.
PMCID: PMC3986890  PMID: 24670040
Bereavement; Grief; General practitioners; Qualitative; Education; Professional development
6.  Feasibility, acceptability and potential effectiveness of dignity therapy for family carers of people with motor neurone disease 
BMC Palliative Care  2014;13:12.
Dignity therapy is a brief psychotherapy that has been shown to enhance the end of life experience. Dignity therapy often involves family carers to support patients weakened by illness and family carers are also the usual recipients of the legacy documents created. No research to date has examined the impact of dignity therapy on family carers at the time of the intervention. This study examined the effects of dignity therapy on family carers of people with motor neurone disease (MND).
This is a cross-sectional study utilizing a one-group pre-test post-test design with 18 family carers of people diagnosed with MND. Outcomes measured caregiver burden, anxiety, depression, and hopefulness. Acceptability was measured with a questionnaire. Feasibility was assessed by examining family carers’ involvement in the therapy sessions, time taken to conduct sessions, and any special accommodations or deviations from the dignity therapy protocol.
There were no significant pre-test post-test changes on the group level, but there were decreases in anxiety and depression on the individual level. Baseline measures indicate that 50% of family carers had moderate to severe scores for anxiety prior to dignity therapy. MND family carers saw benefits to the person with MND and to themselves after bereavement, but acceptability of dignity therapy at the time of the intervention was mixed with some family carers indicating it was helpful, some indicating it was harmful, and many expressing ambivalence. Dignity therapy involving MND family carers is feasible and the involvement of family carers has minimal impact on the therapy.
Dignity therapy is not likely to alleviate caregiver burden in MND family carers, but it may have the ability to decrease or moderate anxiety and depression in distressed MND family carers. Dignity therapy is feasible and generally acceptable to MND family carers. Dignity therapists may provide a better experience for family carers when they are aware of acceptance levels and the quality of partner relationships.
Trial registration
ANZCTR Trial Number: ACTRN12611000410954
PMCID: PMC3995116  PMID: 24646211
Motor neurone disease; Amyotrophic lateral sclerosis; Palliative care; Family carers; Dignity therapy; Psychotherapy; Family therapy
7.  Is dignity therapy feasible to enhance the end of life experience for people with motor neurone disease and their family carers? 
BMC Palliative Care  2012;11:18.
Development of interventions that address psychosocial and existential distress in people with motor neurone disease (MND) or that alleviate caregiver burden in MND family carers have often been suggested in the research literature. Dignity therapy, which was developed to reduce psychosocial and existential distress at the end of life, has been shown to benefit people dying of cancer and their families. These results may not be transferable to people with MND. The objectives of this study are to assess the feasibility, acceptability and potential effectiveness of dignity therapy to enhance the end of life experience for people with motor neurone disease and their family carers.
This is a cross-sectional study utilizing a single treatment group and a pre/post test design. The study population will comprise fifty people diagnosed with MND and their nominated family carers. Primarily quantitative outcomes will be gathered through measures assessed at baseline and at approximately one week after the intervention. Outcomes for participants include hopefulness, spirituality and dignity. Outcomes for family carers include perceived caregiver burden, hopefulness and anxiety/depression. Feedback and satisfaction with the intervention will be gathered through a questionnaire.
This detailed research will explore if dignity therapy has the potential to enhance the end of life experience for people with MND and their family carers, and fill a gap for professionals who are called on to address the spiritual, existential and psychosocial needs of their MND patients and families.
Trial registration
ACTRN Trial Number: ACTRN12611000410954
PMCID: PMC3517308  PMID: 22995100
Motor neurone disease; Amyotrophic lateral sclerosis; Palliative care; Existential distress; Family carers; Dignity therapy
8.  Does smoking status affect the likelihood of consulting a doctor about respiratory symptoms? A pilot survey in Western Australia 
BMC Family Practice  2009;10:16.
Smokers attribute respiratory symptoms, even when severe, to everyday causes and not as indicative of ill-health warranting medical attention. The aim of this pilot study was to conduct a structured vignette survey of people attending general practice to determine when they would advise a person with respiratory symptoms to consult a medical practitioner. Particular reference was made to smoking status and lung cancer.
Participants were recruited from two general practices in Western Australia. Respondents were invited to complete self-administered questionnaires containing nine vignettes chosen at random from a pool of sixty four vignettes, based on six clinical variables. Twenty eight vignettes described cases with at least 5% risk of cancer. For analysis these were dubbed 'cancer vignettes'. Respondents were asked if they would advise a significant other to consult a doctor with their respiratory symptoms. Logistic regression and non-parametric tests were used to analyse the data.
Three hundred questionnaires were distributed and one hundred and forty completed responses were collected over six weeks. The majority (70.3%) of respondents were female aged forty and older. A history of six weeks' of symptoms, weight loss, cough and breathlessness independently increased the odds of recommending a consultation with a medical practitioner by a factor of 11.8, 2.11, 1.40 and 4.77 respectively. A history of smoking independently increased the odds of the person being thought 'likely' or 'very likely' to have cancer by a factor of 2.46. However only 32% of cancer vignettes with a history of cigarette smoking were recognised as presentations of possible cancer.
Even though a history of cigarette smoking was more likely to lead to the suggestion that a symptomatic person may have cancer we did not confirm that smokers would be more likely to be advised to consult a doctor, even when presenting with common symptoms of lung cancer.
PMCID: PMC2652431  PMID: 19220917
9.  Reducing the psychological distress of family caregivers of home based palliative care patients: longer term effects from a randomised controlled trial 
Psycho-Oncology  2014;24(1):19-24.
Palliative care incorporates comprehensive support of family caregivers because many of them experience burden and distress. However, evidence-based support initiatives are few.
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).
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.
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.
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.
PMCID: PMC4309500  PMID: 25044819

Results 1-9 (9)