Ruth McConigley

Caring for someone with high-grade glioma: a time of rapid change for caregivers

Patients diagnosed with high-grade gliomas have a poor prognosis and limited life expectancy, and often experience rapid decline in function. Caring for a patient with high-grade glioma is particularly stressful because caregivers are faced not only with cancer-related caregiving issues, but also issues relating to caring for someone with cognitive impairment. This study aimed to articulate the experiences of family caregivers of people diagnosed with high-grade glioma and to describe their information and support needs. A grounded theory method was adopted. Twenty-one family caregivers of people with high-grade glioma were interviewed using a semi-structured interview guide. A constant comparison method of data analysis was employed. A central theme, A Time of Rapid Change and two sub-themes, Renegotiating Relationships and Learning to be a Caregiver, emerged to describe the experiences of participants. Caregiving was characterised by numerous role and life changes from the moment of diagnosis. Caregivers in this study reported experiences similar to those described by caregivers of people with other cancers. What differed for this group was the rapidity of change and the need for immediate information and support to assist with caring for a person with high-grade glioma.

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 Cronbachs alpha co-efficient. Test-retest reliabilities of 0.84-0.92 were obtained using Pearsons 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.

Developing recommendations for implementing the Australian Pain Society's pain management strategies in residential aged care

Objective:  This study aimed to develop recommendations and a related implementation resource ‘toolkit’ to facilitate implementation of pain management strategies in Australian Residential Aged Care Facilities (RACFs).

Descriptive, exploratory study of the role of nursing assistants in Australian residential aged care facilities: The example of pain management

Aim:  This study explored the experiences of nursing assistants (NAs) who work with older people in residential aged care facilities (RACFs), to ascertain their role in Australian RACFs. Experiences with pain management were used as an example to explore their work role.

Caregivers of People with Neurodegenerative Diseases: Profile and Unmet Needs from a Population-Based Survey in South Australia

INTRODUCTION Neurodegenerative diseases (NDD) are characterized by progressive decline and loss of function, requiring considerable third-party care. NDD carers report low quality of life and high caregiver burden. Despite this, little information is available about the unmet needs of NDD caregivers. METHODS Data from a cross-sectional, whole of population study conducted in South Australia were analyzed to determine the profile and unmet care needs of people who identify as having provided care for a person who died an expected death from NDDs including motor neurone disease and multiple sclerosis. Bivariate analyses using chi(2) were complemented with a regression analysis. RESULTS Two hundred and thirty respondents had a person close to them die from an NDD in the 5 years before responding. NDD caregivers were more likely to have provided care for more than 2 years and were more able to move on after the death than caregivers of people with other disorders such as cancer. The NDD caregivers accessed palliative care services at the same rate as other caregivers at the end of life, however people with an NDD were almost twice as likely to die in the community (odds ratio [OR] 1.97; 95% confidence interval [CI] 1.30 to 3.01) controlling for relevant caregiver factors. NDD caregivers reported significantly more unmet needs in emotional, spiritual, and bereavement support. CONCLUSION This study is the first step in better understanding across the whole population the consequences of an expected death from an NDD. Assessments need to occur while in the role of caregiver and in the subsequent bereavement phase.

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. Inclusion criteria 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 outcomes 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 (JBI‐QARI). 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.

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.

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.

Staying just one step ahead: providing care for patients with motor neurone disease.

Introduction There is limited information about the experiences and educational needs of health professionals who may be required to provide care for people with Motor Neurone Disease (MND) especially in the later stages of the disease. The aim of this study was to determine the experiences of, and need for, education of these health professionals. Methods Interviews and focus groups were conducted with 31 health professionals with some experience in providing palliative care for people with MND. Thematic content analysis was used to identify common themes. Results A key theme, Just One Step Ahead, emerged, that describes the central capability health professionals identified as necessary to help individuals plan and prepare for disease and lifestyle changes just before they arise. Two subthemes also emerged: Expertise in MND and Bespoke Communication. Expertise in MND described the required understanding of the disease and the particular individuals version of the disease to allow the health professional to plan, advise, support and anticipate the needs of the person living with MND. Bespoke Communication was the facility to tailor care messages sensitively and effectively to the range of people involved in care (patients, family, healthcare team members). Conclusions Care of people with MND requires up-to-date expertise about the disease and skilled communication abilities to manage complexity and change. Timely and focused education and specialist MND support for care providers are essential to tailored and responsive care and a widely available education programme has been developed to address these needs.