Out-of-pocket expenses experienced by rural Western Australians diagnosed with cancer.

PURPOSE: Out-of-pocket expenses (OOPE) can have a significant impact on patients' experiences of cancer treatment. This cross-sectional study sought to quantify the OOPEs experienced by rural cancer patients in Western Australia (WA), and determine factors that contributed to higher OOPE. METHODS: Four hundred people diagnosed with breast, lung, colorectal or prostate cancer who resided in selected rural regions of WA were recruited through the WA Cancer Registry and contacted at least 3 months after diagnosis to report the medical OOPE (such as surgery or chemotherapy, supportive care, medication and tests) and non-medical OOPE (such as travel costs, new clothing and utilities) they had experienced as a result of accessing and receiving treatment. Bootstrapped t tests identified demographic, financial and treatment-related factors to include in multivariate analysis, performed using log-linked generalised linear models with gamma distribution. RESULTS: After a median 21 weeks post-diagnosis, participants experienced an average OOPE of AU$2179 (bootstrapped 95% confidence interval $1873-$2518), and 45 (11%) spent more than 10% of their household income on these expenses. Participants likely to experience higher total OOPE were younger than 65 years (p = 0.008), resided outside the South West region (p = 0.007) and had private health insurance (PHI) (p < 0.001). CONCLUSIONS: Rural WA cancer patients experience significant OOPE following their diagnosis. The impact these expenses have on patient wellbeing and their treatment decisions need to be further explored.

Developing a framework for community-based sexual health interventions for youth in the rural setting: protocol for a participatory action research study.

INTRODUCTION: There is limited research examining community-based or multilevel interventions that address the sexual health of young people in the rural Australian context. This paper describes the Participatory Action Research (PAR) project that will develop and validate a framework that is effective for planning, implementing and evaluating multilevel community-based sexual health interventions for young people aged 16-24 years in the Australian rural setting. METHODS AND ANALYSIS: To develop a framework for sexual health interventions with stakeholders, PAR will be used. Three PAR cycles will be conducted, using semistructured one-on-one interviews, focus groups, community mapping and photovoice to inform the development of a draft framework. Cycle 2 and Cycle 3 will use targeted Delphi studies to gather evaluation and feedback on the developed draft framework. All data collected will be reviewed and analysed in detail and coded as concepts become apparent at each stage of the process. ETHICS AND DISSEMINATION: This protocol describes a supervised doctoral research project. This project seeks to contribute to the literature regarding PAR in the rural setting and the use of the Delphi technique within PAR projects. The developed framework as a result of the project will provide a foundation for further research testing the application of the framework in other settings and health areas. This research has received ethics approval from the Curtin University Human Research and Ethics Committee (HR96/2015).

Experiences of acute pain in children who present to a healthcare facility for treatment: a systematic review of qualitative evidence.

BACKGROUND: Pain is a universal and complex phenomenon that is personal, subjective and specific. Despite growing knowledge in pediatric pain, management of children's pain remains sub-optimal and is linked to negative behavioral and physiological consequences later in life. As there is no synthesis of these studies, it was timely to undertake a systematic review. OBJECTIVES: To identify, evaluate and synthesize the existing qualitative evidence on children's experiences of acute pain, including pain management, within a healthcare facility. INCLUSION CRITERIA TYPES OF PARTICIPANTS: Children aged four to 18 years (inclusive) attending a healthcare facility who experienced acute pain associated with any injury, medical condition or treatment. PHENOMENA OF INTEREST: Children's experiences and perceptions of their acute pain, pain management and expectations of others in managing their pain. Studies on children's experiences of pain in the postoperative context were excluded as a systematic review exploring this phenomenon had previously been published. Studies reporting on children's experiences of chronic pain were also excluded. CONTEXT: Any healthcare facility including general practitioners' surgeries, hospitals, emergency departments and outpatient clinics. TYPES OF STUDIES: Qualitative studies including phenomenology, grounded theory, ethnography, action research and feminist research designs. SEARCH STRATEGY: Using a three-step search strategy, databases were searched in December 2015 to identify both published and unpublished articles from 2000 to 2015. Studies published in languages other than English were excluded. METHODOLOGICAL QUALITY: All studies that met the inclusion criteria were assessed by at least two independent reviewers for methodological quality using a standardized critical appraisal tool from the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI). DATA EXTRACTION: Data were extracted from the papers included in the review using standardized data extraction tool from JBI-QARI. DATA SYNTHESIS: Findings were pooled using JBI-QARI. Findings were rated according to their level of credibility and categorized based on similarity in meaning and then were subjected to a meta-synthesis. RESULTS: Four studies were included in this review. Two meta-syntheses were generated from five categories based on 21 findings: first, children can express their pain experiences in terms of cause, location, meaning and quality. Children's pain experiences include both physical and psychological dimensions. Children's pain experiences are influenced by their previous pain experiences, pain expectations and sociocultural factors. Second, children use a range of cognitive/behavioral and sensory/physical self-soothing strategies not only to help manage their pain, but also rely on the actions and presence of others as helpers when they are in pain. CONCLUSION: Children's pain is a multi-dimensional complex phenomenon relying upon a multi-modal approach to management. Children as young as four years are capable of articulating their pain in terms of location, intensity and depth. The way children perceive, express and respond to pain is shaped by sociocultural factors, previous pain experiences and their expectations of pain. Children, parents and healthcare professionals play an important role in managing children's pain experiences.

Unplanned oncology admissions within 14 days of non-surgical discharge: a retrospective study.

AIM: The aim of this study was to identify the incidence, causes, risk factors and interventions for cancer patients requiring unplanned admissions within 14 days of discharge at a large metropolitan private hospital without a co-located emergency department. METHODS: Retrospective data were collected on cancer patients who had an unplanned admission within 14 days of discharge during the period December 1, 2011 and May 31, 2012. Data were collected from the inpatient bed administration database and medical record review. Variables collected included demographics, cancer diagnosis, reasons for admission, interventions, and length of stay. RESULTS: A total of 133 oncology patients required 206 unplanned admissions (UPAs). The most common cancer diagnoses associated with unplanned readmission were upper gastrointestinal (25.4%), colorectal (19.6%), gynaecological (18.8%) and breast (13.8%) cancers. The symptoms most commonly associated with unplanned re-admission were pain (16%); infection not associated with neutropaenia (15.5%); fever and febrile neutropaenia (14.6%); nausea, vomiting and dehydration (13.6%); dyspnoea (8.3%) and altered neurological status (7.8%). The median length of stay (LOS) was 6 days. Length of stay during UPA was decreased for patients with a partner and for those who had a palliative care consult. The need for psychological supports was related to a longer LOS during UPA. CONCLUSION: Cancer patients are at a significant risk of requiring unscheduled care and admission. Strategies and services to limit the burden on patients and the health care system should be reviewed to minimise the incidence of unplanned admission.

Challenges during long-term follow-up of ICU patients with and without chronic disease.

INTRODUCTION: Reflecting on researchers' experiences during follow-up of patients enrolled in research may lead to improved understanding of the challenges faced in maintaining contact when patients leave hospital. AIMS: (1) Describe the challenges researchers face when following-up patients who survive ICU. (2) Identify issues that influenced our ability to follow-up patients. METHODS: This sub-study was part of a larger "case-control" study investigating the quality of life of ICU survivors with and without pre-existing chronic disease. Patients completed self-assessment QLQ and symptom assessment before hospital discharge and at six months, plus they were asked to keep a paper diary of healthcare services used. Patient contact was maintained by monthly telephone calls. Each telephone call was logged and summaries of conversations documented. Our experience of conducting the study was reviewed by the identification of common issues which arose from the follow-up of patients. RESULTS: Thirty patients with a history of chronic disease and 30 patients without underlying chronic disease were followed-up. A total of 582 telephone calls were made for 60 patients discharged from hospital of which 261 (45%) calls led to a telephone interview. Only 19 (30%) of diaries were completed and returned. We identified six challenges associated with issues that arose from the follow-up of patients. CONCLUSION: We underestimated the number of telephone calls required for follow-up after discharge. Diaries were unreliable sources of data suggesting strategies are needed to improve compliance. How patients respond to follow-up is not always predictable. Processes are needed to deal with unexpected information provided during telephone follow-up.

The experiences of acute non-surgical pain of children who present to a healthcare facility for treatment: a systematic review protocol.

REVIEW QUESTION/OBJECTIVE: The qualitative objective of this systematic review is to identify and synthesize the best available evidence on experiences of acute non-surgical pain, including pain management, of children (between four to 18 years) when they present to a healthcare facility for treatment.The specific objectives are to identify: BACKGROUND: The International Association for the Study of Pain defines pain as "an unpleasant sensory and emotional experience associated with actual or potential tissue damage or described in terms of such damage". The pain experience is multifaceted and complex, extending beyond the physiological interpretation of a noxious stimulus, encompassing other dimensions, including; psychological, cognitive, sociocultural, affective and emotional factors. Pain can be described as chronic (persisting for three months or more) or acute (a time limited response to a noxious stimuli). Over the past 50 years clinical research has made revolutionary contributions to better understanding pediatric pain. The once pervasive erroneous notion that infants do not experience pain the same way as adults has been firmly dispelled. We now know that nervous system structures associated with the physiological interpretation of pain are functional as early as fetal development. Despite this critical knowledge and the growing global commitment to improving pediatric pain management in clinical practice, evidence repeatedly suggests that pain management remains suboptimal and inconsistent, a phenomenon commonly referred to as oligoanalgesia. Research evidence has linked poorly managed pain in the pediatric population to negative behavioral and physiological consequences later in life. Effective pain management is therefore a priority area for health care professionals. Improved understanding of children's experiences of acute non-surgical pain may lead to improved pain management and a reduction in oligoanalgesia.In the 1970s and 1980s, studies began exploring the subjective experiences of pediatric pain and discovered children's abilities to articulate their pain experiences, and to link causes and consequences of their pain. Developmental trends or age related patterns with regards to children's expressions and experiences of pain were identified. Recent studies have also recognized apparent trends in children's understanding and expressions of pain; these follow an age and cognitive development trajectory in line with Piaget's theories of development.For many children psychosocial aspects of pain, including emotions like fear, stress and anxiety, are often more unpleasant than the painful experience itself. Emotional responses such as distress and anxiety are commonly associated with the anticipation of pain, can exacerbate and intensify the pain experience, and can significantly lower a child's pain threshold. One study utilized an observational pain assessment tool to explore children's pain experiences. The findings indicated that children who underwent "non-painful" procedures (such as restraint) had equal, and in some cases higher, pain scores than those who underwent painful procedures (such as intravenous cannulation).Several studies exploring pediatric pain within health care settings (including, but not limited to, general practitioners, hospitals, emergency departments and outpatient clinics) have adopted quantitative methods, some examined parents' perspectives, and others explored nurses' perceptions. While results of such studies have added to the existing body of knowledge that supports the need to focus on improving pediatric pain management, it has been suggested that failing to ask children directly risks not capturing subjective experiences of pain from the children's perspectives in their entirety. Seeking the children's perspectives could provide a more reliable and adequate means of gaining insight into their needs and expectations when they are in pain.A single centered study in Singapore used semi-structured face-to-face interviews (n=15) to explore children's experiences of pain management postoperatively. While the children, aged between six and 12 years, identified the role of analgesia in managing their pain, they also placed significant emphasis on the role of parents and health care professionals in implementing non-pharmacological interventions in pain management. These results are relevant as they provide insights into how children experience and express pain, and their expectations of health care professionals in managing their pain. These findings draw attention to effective pain management approaches when caring for children. Similarly, a UK study adopted a cross sectional descriptive design using the draw and write technique aimed at investigating children's views on what helped when they were in pain. The children (n=71) were aged between four and 16 years. Findings revealed that children viewed themselves as active agents in pain management, while also placing significant emphasis on the importance of parents and nurses in managing their pain. In both studies, children valued nurses for social interactions, such as kindness and humor, rather than the provision of clinical care, including analgesia administration. Adjunct therapies such as distraction, visualization and music have also been shown to be effective in managing the pain experience in children.Not only do these findings demonstrate the complexity of the pain experience for the child, they also support the notion that improved pain management may come from research that is designed to better understand the entire pain experience from the child's perspective. While there are systematic reviews on interventions for managing children's pain, and one explored children's experiences in the postoperative context, none have considered children's experiences of acute non-surgical pain when they present for treatment. This qualitative systematic review aims to identify and synthesize results of studies exploring children's experiences of pain and pain management.

Experiences of cancer patients in a patient navigation program: a qualitative systematic review.

BACKGROUND: A patient navigation program is a model of care which entails trained personnel providing individualized and assistive care to adult oncology patients to help the patients overcome barriers. A further aim of the program is to achieve continuity of care as patients experience the complex healthcare system. Patient navigation is a new model of care in many institutions, and as such the experiences of patients in the patient navigation program remains inconclusive. OBJECTIVES: The review seeks to understand the experiences of adult patients in patient navigation programs and how patient navigators impact the challenges patients encounter in the cancer care continuum. TYPES OF PARTICIPANTS: Participants of interest were adult cancer patients more than 18 years of age who are receiving or have received cancer care and are in a patient navigation program or had been in a hospital patient navigation program. Types of intervention(s)/phenomena of interest: The phenomenon of interest was the experiences of adult cancer patients who used patient navigation programs in hospital including how patient navigators impact on the challenges patients encounter in the cancer care continuum. Types of studies: This review considered studies that focused on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, action research and exploratory studies. CONTEXT: The review includes patient navigation programs within a hospital setting. Types of outcome: The review sought to understand the experiences of patients with cancer in patient navigation programs in the hospital. SEARCH STRATEGY: A three-step search strategy was used. An initial search to identify keywords was undertaken in PubMed and Science Direct followed by an expanded search using all identified keywords and index terms specific to each included database. The reference lists of included papers were then searched for any other relevant studies. METHODOLOGICAL QUALITY: Each paper was assessed independently by two reviewers for methodological quality using the Joanna Briggs Institute Qualitative Assessment and Review Instrument. Any disagreements that arose between the reviewers were resolved through discussion. DATA COLLECTION: Data extraction and synthesis was conducted using standardized data extraction and synthesis tools from JBI-QARI. DATA SYNTHESIS: The 17 unequivocal and credible findings of included studies were categorized according to similarity of meaning and developed into three synthesized findings. RESULTS: Three papers were included in the review. The three synthesized findings from the 17 findings extracted from the papers were: (1) Emotional empowerment: patient navigators need to be present with patients at key phases of the cancer care continuum and assure patients of their accessibility; (2) Knowledge empowerment: patient navigators need to explore and manage the needs and expectations of patients so that the healthcare team and patient have the same understanding of treatment goals and plans; and (3) Bridging the gaps: patient navigators need to ensure practical assistance is provided for patients to ensure continuity of care even at the completion of the treatment regimen. CONCLUSIONS: The presence of a patient navigator provides strong support to the patients when experiencing disruption from cancer diagnosis and treatment. The emotional isolation they experience lessens with the assurance that there is always a consistent and constant contact point they can fall back on. The logistic and practical help given by the navigators allows patients to take time to process information and make sense of what is happening.

Australian health care providers' views on opt-out HIV testing.

BACKGROUND: Opt-out HIV testing is a novel concept in Australia. In the opt-out approach, health care providers (HCPs) routinely test patients for HIV unless they explicitly decline or defer. Opt-out HIV testing is only performed with the patients' consent, but pre-test counselling is abbreviated. Australian national testing guidelines do not currently recommend opt-out HIV testing for the general population. Non-traditional approaches to HIV testing (such as opt-out) could identify HIV infections and facilitate earlier treatment, which is particularly important now that HIV is a chronic, manageable disease. Our aim was to explore HCPs' attitudes toward opt-out HIV testing in an Australian context, to further understanding of its acceptability and feasibility. METHODS: In this qualitative study, we used purposeful sampling to recruit HCPs who were likely to have experience with HIV testing in Western Australia. We interviewed them using a semi-structured guide and used content analysis as per Graneheim to code the data. Codes were then merged into subcategories and finally themes that unified the underlying concepts. We refined these themes through discussion among the research team. RESULTS: Twenty four HCPs participated. Eleven participants had a questioning attitude toward opt-out HIV testing, while eleven favoured the approach. The remaining two participants had more nuanced perspectives that incorporated some characteristics of the questioning and favouring attitudes. Participants' views about opt-out HIV testing largely fell into two contrasting themes: normalisation and routinisation versus exceptionalism; and a need for proof versus openness to new approaches. CONCLUSION: Most HCPs in this study had dichotomous attitudes toward opt-out HIV testing, reflecting contrasting analytical styles. While some HCPs viewed it favourably, with the perceived benefits outweighing the perceived costs, others preferred to have evidence of efficacy and cost-effectiveness.

Health-care providers' experiences with opt-out HIV testing: a systematic review.

HIV is now a manageable chronic disease with a good prognosis, but early detection and referral for treatment are vital. In opt-out HIV testing, patients are informed that they will be tested unless they decline. This qualitative systematic review explored the experiences, attitudes, barriers, and facilitators of opt-out HIV testing from a health-care provider (HCP) perspective. Four articles were included in the synthesis and reported on findings from approximately 70 participants, representing diverse geographical regions and a range of human development status and HIV prevalence. Two synthesized findings emerged: HCP attitudes and systems. The first synthesized finding encompassed HCP decision-making attitudes about who and when to test for HIV. It also included the assumptions the HCPs made about patient consequences. The second synthesized finding related to systems. System-related barriers to opt-out HIV testing included lack of time, resources, and adequate training. System-related facilitators included integration into standard practice, support of the medical setting, and electronic reminders. A common attitude among HCPs was the outdated notion that HIV is a terrible disease that equates to certain death. Some HCPs stated that offering the HIV test implied that the patient had engaged in immoral behaviour, which could lead to stigma or disengagement with health services. This paternalism diminished patient autonomy, because patients who were excluded from opt-out HIV testing could have benefited from it. One study highlighted the positive aspects of opt-out HIV testing, in which participants underscored the professional satisfaction that arose from making an HIV diagnosis, particularly when marginalized patients could be connected to treatment and social services. Recommendations for opt-out HIV testing should be disseminated to HCPs in a broad range of settings. Implementation of system-related factors such as electronic reminders and care coordination procedures should be considered, and a social-justice commitment among HCPs should be encouraged.

Identifying type 2 diabetes risk classification systems and recommendations for review of podiatric care in an Australian Aboriginal health clinic.

BACKGROUND: There are several risk classification systems developed to facilitate diabetic foot assessments and prioritise diabetes patients for foot prevention services according to risk factors. Utilisation of both The University of Texas Diabetic Foot Risk Classification System (UTDFRCS) and The National Evidence-Based Guideline on Prevention, Identification and Management of Foot Complications in Diabetes (Part of the Guidelines on Management of Type 2 Diabetes), allows guidance for the podiatrist in terms of review timeframes for future assessments and treatment. The aim of this clinical audit was to classify Aboriginal type 2 diabetes subjects' risk status according to UTDFRCS and identify if evidence based standards are being met for podiatry services at the Albury-Wodonga Aboriginal Health Service in New South Wales, Australia. METHODS: A retrospective clinical audit over a twenty six month period was undertaken at the Albury-Wodonga Aboriginal Health Service, New South Wales. This is a primary health care facility that started podiatry services in August 2011. The primary variables of interest were the UTDFRCS for each subject and whether those participants met or did not meet the National Evidence-Based Guideline for review appointment timeframes. Other variables of interest include age, gender, duration of diabetes, occasions of visits and cancelled and failure to attend appointments to the podiatry service over the data collection period. RESULTS: There was excellent overall adherence (94 %) of this sample population (n = 729) to the National Evidence-Based Guideline for podiatric review timeframes according to their risk status. Males were reported to be less likely to comply with the review timeframes compared to women. There was no association between risk status and age (OR = 1.04, p = 0.11), duration of diabetes (OR = 1.03, p = 0.71) or gender (OR = 0.77, p = 0.67). CONCLUSIONS: Regular foot examinations aid in stratifying patients according to risk status, guiding podiatry interventions to reduce the likelihood of ulceration and amputation. This primary health care setting has achieved podiatric evidence based standards for Aboriginal people with type 2 diabetes, demonstrated by acceptable timeframes for review appointments.

Advanced life support (ALS) instructors experience of ALS education in Western Australia: a qualitative exploratory research study.

BACKGROUND: When cardiac arrest occurs, timely competent advanced life support (ALS) interventions by nursing staff can influence patient outcomes. Ongoing ALS education influences maintenance of competency and avoids skill decay. OBJECTIVES: To explore the methods of ALS education delivery for nurses in the workplace; describe the issues relating to maintaining ALS competency; explore ALS competency decay for nurses and develop recommendations for the provision of continuing ALS education. DESIGN: A qualitative exploratory design was used to study ALS education provision in the workplace. PARTICIPANTS: Data were collected from ALS nurse experts in Western Australia by face-to-face and phone interviews. METHODS: Semi-structured interviews were conducted and organised around a set of predetermined questions. RESULTS: Two major themes were identified; the first theme Demand and Supply describes the increasing demand for ALS education for nurses and the challenges with providing timely cost effective traditional face-to-face ALS education. The second theme, Choosing The Best Education Options describes new ways to provide ALS education using emerging technologies. CONCLUSIONS: The study suggested that using e-learning methods would assist with educating the maximum amount of nurses in a timely manner and e-learning and teleconferencing offer opportunities to reach nurses in distant locations. Delivering ALS education more frequently than annually would increase skills maintenance and lessen skill decay. Further research is required to explore which blended e-learning model is best suited to ALS education.

Promoting the consumer voice in palliative care: exploring the possibility of using consumer impact statements.

BACKGROUND: It can be difficult to engage consumers in health decision making. This is particularly so in the area of palliative care, where consumers are very unwell and are unlikely to become involved in long-term programmes that promote consumer input. This paper explores the possibility of using 'Consumer Impact Statements' to facilitate the inclusion of the viewpoint of people at the end of life in the process of policy and decision making, particularly in the area of subsidy of pharmaceuticals used in palliative care. SEARCH STRATEGY: A broad search was conducted to find information about the use of impact statements in any health field. The health literature and grey literature were searched to explore the use of Consumer Impact Statements to date. RESULTS: No papers were found describing the use of Consumer Impact Statements in the palliative care setting. Health impact assessment is used in the areas of environmental health and community health. Impact statements are less commonly used in other areas of health, especially policy development, and no formal description of a Consumer Impact Statement was found. DISCUSSION: There is considerable scope for developing the use of Consumer Impact Statements to promote the consumer viewpoint in health decision making, because it will allow people who are otherwise unlikely to contribute to the public debate to have their views heard by decision makers. CONCLUSION: The use of Consumer Impact Statements is particularly suited to palliative care, given that consumers are often otherwise unable to contribute to the public debate.

National consultation informing development of guidelines for a palliative approach for aged care in the community setting.

AIM: This study aimed to obtain perspectives from key stakeholders to inform the development of Australian national guidelines for a palliative approach to aged care in the community setting. METHODS: A descriptive, exploratory qualitative design was used. Sampling was purposive. Data were collected during audiotaped, semistructured, individual and focus group interviews that addressed the need for the guidelines and aimed to identify practice areas for inclusion. Thematic analysis was undertaken. RESULTS: Interviews were conducted across Australia and included 172 participants: health-care providers, consumers, volunteers and researchers/educators. Themes emerging from the data were: Provision of a Palliative Approach in Community Aged Care, Carer Support, Advance Care Planning, Physical and Psychological Symptom Assessment and Management, Psychosocial Support, Spiritual Support, Issues for Aboriginal or Torres Strait Islander People, Older People from Diverse Cultural and Language Groups, and Clients with Special Needs. CONCLUSION: Findings underpinned development of new guideline documents.

Nurses' perceptions of caring for dying patients in an open critical care unit: a descriptive exploratory study.

BACKGROUND: Nurses in critical care areas play a vital part in providing end-of-life care and recognise that an ideal death should be peaceful, dignified, and comfortable. However, environmental restrictions in critical care units can make a peaceful death unachievable and can have a profoundly negative impact on end-of-life care. PURPOSE: To describe the provision of end-of-life care in an open high-dependency unit. METHOD: A descriptive exploratory approach was used involving semi-structured interviews with a purposive sample of five registered nurses working in the high-dependency area at a major teaching hospital. The interviews were audiotaped and transcribed. Thematic analysis was used to code the data and identify themes. RESULTS: Three themes emerged from the data. The core theme was 'the nurse as protector'. The two other themes were 'conflict of care' and 'peace and quiet'. Within these themes, characteristics of an ideal death were identified and barriers to providing an ideal death were acknowledged. CONCLUSION: This study illustrates nurses' perceptions of caring for dying patients in an open critical care unit. This environment influences the development of the nursing role as protector and presents barriers to achieving an ideal death.

Implementation and evaluation of an education program to guide palliative care for people with motor neurone disease.

BACKGROUND: Despite a recognized need for a palliative approach to caring for people with motor neurone disease (MND), access to palliative care is often limited. AIM: This project aimed to improve the knowledge of health professionals about a palliative approach to MND care. DESIGN: A three-phase study was undertaken to develop, implement and evaluate an education program for health professionals that promoted a palliative approach to MND care. This paper discusses the second and third phases: the implementation and evaluation of the project. Education workshops were held for health professionals. Their knowledge of palliative care was measured before and after the workshops and one month later. Attitudes to providing MND care were also measured. SETTING: Workshops were held in South Australia and Western Australia. Participants were health professionals working in the areas of MND care or palliative care. Some aged care and generalist health professionals were included if they had a role in providing care to people with MND. RESULTS: The participants demonstrated an improvement in MND knowledge (χ(2) = 64.13(2), p = 0.000) and palliative care knowledge (χ(2) = 17.24(2), p = 0.000); both were sustained at one month. Attitudes to providing MND care also improved (χ(2) = 11.85(2), p = 0.003) and were maintained at the six-month follow-up. Participants indicated that the knowledge gained positively influenced their clinical practice. CONCLUSIONS: A targeted education program for health professionals improved understanding about end-of-life care for people with MND. Health care providers also reported having made improvements in the care provided to patients and carers, particularly communication, psychosocial care and symptom management.

Developing a sustainable model of rural cancer care: the Western Australian Cancer Network project.

PROBLEM: Cancer-related mortality is higher in rural areas than in urban centres. One of the contributing factors is limited access to treatment options in rural areas. DESIGN: An evaluation of the effectiveness of the Western Australian Cancer Network (CanNET WA) pilot project was undertaken using qualitative methods and document analysis. SETTING: CanNET WA was established in the Great Southern region of Western Australia. KEY MEASURES FOR IMPROVEMENT: Three measures were assessed: impact of the CanNET WA on consumers, care providers and changes to systems and processes. STRATEGIES FOR CHANGE: CanNET WA comprised a number of initiatives that together led to an improvement in cancer care. These included a multidisciplinary cancer team, improved access to visiting medical specialists, formal links with tertiary cancer centres, increased primary health involvement in cancer care and increased education regarding cancer care for local health care providers. EFFECTS OF CHANGE: Changes in the three key outcome measures were reported. Consumers had greater choice of treatment options and had more involvement in decision making. Health professionals reported improvements in care coordination and in peer support related to the new multidisciplinary cancer care team, and improved links with tertiary cancer centres in Perth. Systemic changes included mapping of referral pathways and tumour-specific care pathways. LESSONS LEARNT: CanNET WA has demonstrated the need for coordinated cancer care for rural people that offers care locally whenever possible. The success of the project paved the way for the rollout of the CanNET WA concept into other regional areas of Western Australia.

Measuring symptom distress in palliative care: psychometric properties of the Symptom Assessment Scale (SAS).

Given the variety of palliative care settings within which symptom distress must be assessed, development of a valid and reliable clinical tool that can be simply applied in every day practice is needed. The Symptom Assessment Scale (SAS) uses a 0-10 numerical scale with zero being no symptom and 10 being the worst possible. The key symptoms included in the scale are breathing, bowel problems, appetite problems, pain, insomnia, nausea and fatigue. The instrument is structured to allow either the patient, family member or nurse to assess the symptoms. The scale was tested on 572 cancer patients recruited from five palliative care services in Western Australia. Results indicated that the instrument was brief, clinically useful and was administered with minimal missing data. Internal consistency reliability estimates of the scale ranged from 0.64-0.92 as measured by the Cronbach's alpha co-efficient. Test-retest reliabilities of 0.84-0.92 were obtained using Pearson's correlation co-efficient. The instrument does not provide an in-depth assessment of individual symptoms, but serves as a screening tool to identify troublesome symptoms that warrant attentive and immediate investigation and comprehensive assessment.

The diagnosis and treatment decisions of cancer patients in rural Western Australia.

BACKGROUND: People living in rural areas who have a diagnosis of cancer have poorer outcomes than people living in urban centers. The reasons for this are unclear. Little is known about the impact that living in a rural area has on the diagnosis and treatment decisions of these people and how these may in turn impact on care outcomes. OBJECTIVES: This study explored the reasons why people living in rural areas may delay diagnosis and what issues affected the decisions they made regarding their cancer treatment. METHODS: In depth, semistructured interviews were conducted with 18 participants from 3 rural Western Australian health regions. Content analysis was used to develop themes. RESULTS: Four themes were identified to describe the rural cancer experience. The first 3 themes, Experiences of Diagnosis and Referral, The Treatment Journey, and Managing your own Care, relate to the experiences of rural cancer patients during their journey through the health care system. The final overarching theme, Implicit Faith, described the level of confidence that rural cancer patients had in the health system, often despite delays and inconveniences. CONCLUSIONS: There is a need to improve primary health care and care coordination for rural cancer patients living in Australia and to promote self-advocacy and consumer empowerment for rural cancer patients. IMPLICATIONS FOR PRACTICE: Rural patients need help and support throughout their cancer journey, including through the process of diagnosis.