Georgia Halkett

Predictors of Complicated Grief: A Systematic Review of Empirical Studies

A systematic review of the literature on predictors of complicated grief (CG) was undertaken with the aim of clarifying the current knowledge and to inform future planning and work in CG following bereavement. Predictors of CG prior to the death include previous loss, exposure to trauma, a previous psychiatric history, attachment style, and the relationship to the deceased. Factors associated with the death include violent death, the quality of the caregiving or dying experience, close kinship relationship to the deceased, marital closeness and dependency, and lack of preparation for the death. Perceived social support played a key role after death, along with cognitive appraisals and high distress at the time of the death. Inconsistent definitions of CG and measurement tools were noted in the earlier studies reviewed. Limitations identified in the studies included use of cross-sectional designs, heterogeneous samples, high attrition, demographic differences between cases and controls, differences in length of time since death, and differences in types of death experienced. Notwithstanding these limitations, some consistent findings have emerged. Further research into conceptualizations of CG in terms of attachment theory and constructivist and cognitive-behavioral concepts of finding purpose and meaning after bereavement is warranted.

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.

Patient and caregiver perceptions of communication of prognosis in high grade glioma.

This study sought the views of patients and their caregivers on their experience of being diagnosed with high grade glioma. Purposive sampling was used to recruit 19 patients and 21 caregivers from the medical oncology unit of a tertiary hospital. A semi-structured face-to-face interview was conducted. Interviews were audio-taped and transcribed verbatim. Data was analysed based on Grounded Theory and using the constant comparison method. This paper focuses on patient and carer perceptions of the initial communication about the diagnosis of high grade glioma and its prognosis. Themes identified included: (a) shock at hearing the diagnosis; (b) trying to understand and process prognostic information when still in shock; (c) the perception of hope being taken away; (d) individualizing prognostic information; and (e) clinicians’ lack of communication skills. This study shows that the first communication of prognosis to patients with high grade glioma and their caregivers requires careful negotiation. It illustrates the inability of individuals to process detailed prognostic information when in a state of initial shock and distress. The importance of balancing honesty with hope in the communication of a poor prognosis is highlighted. We recommend that clinicians seek patient preferences for the amount and type of information they require and that prognostic information be individualized. Detailed discussions of prognosis should only take place with senior medical staff, or advanced trainees who have demonstrated acceptable communication skills.

Follow-up of breast cancer patients: Preliminary findings from nurse-patient consultations and patient surveys

BACKGROUND: Although clinicians in both primary and tertiary care settings are involved in the care of breast cancer patients following the active treatment phase, few studies report how patients interact with health care providers.METHODS: Participants in this breast cancer follow-up study were recruited from a hospital based nurse-led follow-up clinic in Western Australia. Methods included audio taped, transcribed consultations with Specialist Breast Nurses (SBNs) and patient self-completed surveys.RESULTS: Preliminary data suggest that SBNs play an important role in supporting women to deal with the impact of breast cancer in the years following active treatment. The data suggest that the process of adjustment to a diagnosis of cancer continues for many years after the treatment has ceased. In many cases the women require on-going support to recalibrate their response to normal physical changes that may or may not be a consequence of surgery, radiotherapy and chemotherapy.

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.

The role of the breast care nurse during treatment for early breast cancer: The patient’s perspective

Abstract INTRODUCTION: Women who are diagnosed with breast cancer require the support of a range of people during their treatment. Although the role of the breast care nurse in providing support has recently been investigated in several Australian studies the patients’ perspective on the role of the breast care nurse in Australian hospitals has not previously been described in detail. The aim of this paper is to explore patients’ perspectives on the role of the breast care nurse. METHODS: In-depth interviews were conducted with 18 women who had completed treatment for early breast cancer. The women were asked to describe their experiences from the time of diagnosis through to treatment completion. Thematic analysis was used to analyse the data. FINDINGS: Breast cancer patients repeatedly emphasised the importance of the role of their breast care nurses throughout their experience of breast cancer. The support that breast care nurses provided incorporated the following components: communication, rapport and an awareness of the women’s needs, availability, reassurance and practical information. CONCLUSION: This study provides an understanding of women’s perspectives on the role of breast care nurses and confirms that breast care nurses play an important support role during the experience of early breast cancer. Oncology clinics should focus on ensuring that all women who are diagnosed with breast cancer have adequate access to the support that breast care nurses are able to provide.

Effective Communication and Information Provision in Radiotherapy - The Role of Radiation Therapists

Introduction: Health professionals have a duty of care to radiotherapy patients in providing them with adequate information before treatment. There is a lack of research that describes the roles of radiation therapists and radiation oncology nurses in providing information to patients. This study aimed to: (1) explore how radiation therapists communicate with breast cancer patients during a radiotherapy planning appointment; (2) determine what information is provided during this appointment and (3) explore radiation therapists’ perspectives on their role in providing patient information and support.Methods: The following methodologies were used: self-report questionnaires; simulated radiotherapy planning sessions and joint interpretive forums. Statistical analysis was used to analyse the questionnaires and the simulated planning sessions and forums were analysed qualitatively.Results: A total of 110 radiation therapists participated in the survey. We simulated two radiotherapy planning appointments and held two forums. Four themes emerged: role definitions, reducing patient anxiety and distress, barriers and strategies for effective communication and confidence in patient communication.Conclusion: Radiation therapists play an important role in communicating with patients and providing information, particularly if patients exhibit anxiety and distress. Further research is required to determine whether patients’ information needs can be met with additional information provided by radiation therapists.

Protocol for the Care-IS Trial: a randomised controlled trial of a supportive educational intervention for carers of patients with high-grade glioma (HGG)

Introduction High-grade glioma (HGG) is a rapidly progressive and debilitating disease. Primary carers experience significant levels of distress which impacts on their experience of caregiving, the quality of care received and the community in terms of the increased reliance on healthcare due to the potential development of complicated grief. This paper describes the protocol for testing the efficacy and feasibility of an intervention for primary carers of patients with HGG in order to improve preparedness to care and reduce carer distress. Methods Randomised controlled trial. The target population is carers of patients with HGG who are undergoing combined chemoradiotherapy. The intervention consists of 4 components: (1) initial telephone assessment of unmet needs of the carer, (2) tailoring of a personalised resource folder, (3) home visit, (4) ongoing monthly telephone contact and support for 12 months. The control arm will receive usual care. Primary hypothesis This intervention will improve preparedness for caring and reduce carer psychological distress. Secondary hypothesis This intervention will reduce carer unmet needs. The longer term aim of the intervention is to reduce patient healthcare resource utilisation and, by doing so, reduce costs. Assessments will be obtained at baseline, 8 weeks post intervention, then 4, 6 and 12 months. Participants will also complete a healthcare utilisation checklist and proxy performance status which will be assessed at baseline and monthly. 240 carers will be recruited. The sample size is 180. Multilevel mixed effects regression models will be applied to test the effect of the intervention. Ethics Ethics approval has been gained from Curtin University and the participating sites. Dissemination Results will be reported in international peer-reviewed journals. Trial registration number Australian and New Zealand Clinical Trials Registration (ACTRN)12612001147875.

Supporting Patients Treated for Prostate Cancer: A Video Vignette Study With an Email-Based Educational Program in General Practice

Background Men who have been treated for prostate cancer in Australia can consult their general practitioner (GP) for advice about symptoms or side effects at any time following treatment. However, there is no evidence that such men are consistently advised by GPs and patients experience substantial unmet need for reassurance and advice. Objective The intent of the study was to evaluate a brief, email-based educational program for GPs to manage standardized patients presenting with symptoms or side effects months or years after prostate cancer treatment. Methods GPs viewed six pairs of video vignettes of actor-patients depicting men who had been treated for prostate cancer. The actor-patients presented problems that were attributable to the treatment of cancer. In Phase 1, GPs indicated their diagnosis and stated if they would prescribe, refer, or order tests based on that diagnosis. These responses were compared to the management decisions for those vignettes as recommended by a team of experts in prostate cancer. After Phase 1, all the GPs were invited to participate in an email-based education program (Spaced Education) focused on prostate cancer. Participants received feedback and could compare their progress and their performance with other participants in the study. In Phase 2, all GPs, regardless of whether they had completed the program, were invited to view another set of six video vignettes with men presenting similar problems to Phase 1. They again offered a diagnosis and stated if they would prescribe, refer, or order tests based on that diagnosis. Results In total, 64 general practitioners participated in the project, 57 GPs participated in Phase 1, and 45 in Phase 2. The Phase 1 education program was completed by 38 of the 57 (59%) participants. There were no significant differences in demographics between those who completed the program and those who did not. Factors determining whether management of cases was consistent with expert opinion were number of sessions worked per week (OR 0.78, 95% CI 0.67-0.90), site of clinical practice (remote practice, OR 2.25, 95% CI 1.01-5.03), number of patients seen per week (150 patients or more per week, OR 10.66, 95% CI 3.40-33.48), and type of case viewed. Completion of the Spaced Education did impact whether patient management was consistent with expert opinion (not completed, OR 0.88, 95% CI 0.5-1.56). Conclusions The management of standardized patients by GPs was particularly unlikely to be consistent with expert opinion in the management of impotence and bony metastasis. There was no evidence from this standardized patient study that Spaced Education had an impact on the management of patients in this context. However, the program was not completed by all participants. Practitioners with a greater clinical load were more likely to manage cases as per expert opinion.

Supporting patients with low health literacy: what role do radiation therapists play?

PurposeHealth literacy plays a key role in a patient’s ability to use health information and services, and can affect health outcomes. This study aimed to explore radiation therapists’ perspectives on how they support people with lower health literacy who are undergoing radiotherapy.MethodsSemi-structured interviews were conducted with 25 radiation therapists working in radiation oncology departments in New South Wales, Australia.ResultsThe four key themes were (1) the process of identifying a patient with low health literacy, (2) the perceived consequences of low health literacy, (3) managing and responding to the needs of different health literacy groups and (4) recommendations to address low health literacy in radiotherapy. Radiation therapists appeared to make an informal, intuitive judgment about a patient’s health literacy, using a variety of verbal and non-verbal cues as well as impromptu conversations with the multi-disciplinary team. Patients perceived to have lower health literacy were described as having greater difficulties assimilating knowledge and engaging in self-care. Although participants reported communicating to patients at a basic level initially, they subsequently tailored their communication to match a patient’s health literacy. Strategies reported to communicate to low health literacy groups ranged from using lay language with minimal medical terminology, using visual aids (photos), using analogies, reiterating information and asking family members with higher literacy to attend consultations.ConclusionA more structured approach to supporting patients with low health literacy and integrating health literacy training in radiation oncology departments may help to minimise the adverse outcomes typically experienced by this population.