Moving from Interest to Engagement-Understanding the Research Capacity Building Needs of Rehabilitation Doctors.

INTRODUCTION: Doctors working in rehabilitation settings have specialized clinical skills and experience, but research activity may be constrained by time pressures and inadequate current skills. This means missed opportunities to contribute to the evidence-base for better clinical practice and outcomes for people living with disabling, chronic complex conditions. This research aimed to understand rehabilitation doctors' research needs, experience, and aspirations to enable future training initiatives that are tailored to their practice context. METHODS: This exploratory sequential mixed-method study comprised a survey followed by focus groups. Rehabilitation doctors from three health services in south-east Queensland, Australia completed an online survey incorporating the Research Spider to explore their research experience, confidence, interest, opportunity, and intent. Focus groups explored the survey results and participants' views regarding strategies to build research capacity. RESULTS: The major findings were the gap between high research interest and low experience, confidence and opportunity; and fundamental research skills were identified as priority training topics. These findings support previous research. However, rehabilitation doctors may also have a self-expectation that, as competent clinicians, they should necessarily also be research-competent, and hold misperceptions regarding the shared nature of health services research. DISCUSSION: Protected time and funding may enhance engagement with research to generate specialty-relevant evidence for practice. To this end, a research capacity building initiative in the form of a series of self-directed learning packages has been developed and implemented. A tailored workshop to strengthen rehabilitation doctors' research skills and engagement has also been developed for implementation.

Nurses' Perspectives of Person-Centered Spinal Cord Injury Rehabilitation in a Digital Hospital.

PURPOSE: Nurses' perspectives on electronic medical record (eMR) use and compatibility with person-centered care (PCC) in rehabilitation were explored. DESIGN: This cross-sectional, qualitative study involved nurses practicing in a spinal cord injury service within the first Australian tertiary hospital to implement a large-scale eMR system. METHODS: Ten focus groups were audio-recorded and transcribed for thematic analysis. FINDINGS: The three themes were (1) discovering how eMR fits in a specialty setting, (2) making eMR work through adaptability, and (3) realizing the impact of eMR inclusion in the nurse-patient relationship. CONCLUSIONS: The eMR introduction triggered compensatory practices to manage the complexities and shortcomings of electronic documentation. Nurses adapted routines and reoriented workflows to preserve PCC. CLINICAL RELEVANCE: While absorbing eMR-driven changes in documentation, rehabilitation nurses must in parallel manage evolving nursing practice norms in the digital environment in order to sustain PCC. This requires strategic foresight and commitment.

Clinical outcomes of an integrated primary-secondary model of care for individuals with complex type 2 diabetes: a non-inferiority randomised controlled trial.

AIMS/HYPOTHESIS: The aim of the study was to determine if a Beacon model of integrated care utilising general practitioners (GPs) with special interests could achieve similar clinical outcomes to a hospital-based specialist diabetes outpatient clinic. METHODS: This pragmatic non-inferiority multisite randomised controlled trial assigned individuals with complex type 2 diabetes to care delivered by a Beacon clinic or to usual care delivered by a hospital outpatient department, in a 3:1 ratio. Owing to the nature of the study, researchers were only blinded during the allocation process. Eligible participants were aged 18 or over, had been referred by their usual GP to the hospital central referral hub with type 2 diabetes and had been triaged to be seen within 30 or 90 days. The intervention consisted of diabetes management in primary care by GPs with a special interest who had been upskilled in complex diabetes under the supervision of an endocrinologist. The primary outcome was HbA1c at 12 months post-recruitment. The non-inferiority margin was 4.4 mmol/mol (0.4%). Both per-protocol and intention-to-treat analyses are reported. RESULTS: Between 27 November 2012 and 14 July 2015, 352 individuals were recruited and 305 comprised the intention-to-treat sample (71 in usual care group and 234 in the Beacon model group). The Beacon model was non-inferior to usual care for both the per-protocol (difference -0.38 mmol/mol [95% CI -4.72, 3.96]; -0.03% [95% CI -0.43, 0.36]) and the intention-to-treat (difference -1.28 mmol/mol [95% CI -5.96, 3.40]; -0.12% [95% CI -0.55, 0.31]) analyses. Non-inferiority was sustained in a sensitivity analysis at 12 months. There were no statistically or clinically significant differences in the secondary outcomes of BP, lipids or quality of life as measured by the 12 item short-form health survey (SF-12v2) and the diabetes-related quality of life (DQoL-Brief) survey. Safety indicators did not differ between groups. Participant satisfaction on the eight-item client satisfaction questionnaire (CSQ-8) was good in both groups, but scores were significantly higher in the Beacon model group than the usual care group (mean [SD] 28.4 [4.9] vs 25.6 [4.9], respectively, p < 0.001). CONCLUSIONS/INTERPRETATION: In individuals with type 2 diabetes, a model of integrated care delivered in the community by GPs with a special interest can safely achieve clinical outcomes that are not inferior to those achieved with gold-standard hospital-based specialist outpatient clinics. Individuals receiving care in the community had greater satisfaction. Further studies will determine the cost of delivering this model of care. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12612000380897 FUNDING: The study was funded by the Australian National Health and Medical Research Council (GNT1001157).

Translating the Elements of Health Governance for Integrated Care from Theory to Practice: A Case Study Approach.

INTRODUCTION: Against a paucity of evidence, a model describing elements of health governance best suited to achieving integrated care internationally was developed. The aim of this study was to explore how health meso-level organisations used, or planned to use, the governance elements. METHODS: A case study design was used to offer two contrasting contexts of health governance. Semi-structured interviews were conducted with participants who held senior governance roles. Data were thematically analysed to identify if the elements of health governance were being used, or intended to be in the future. RESULTS: While all participants agreed that the ten elements were essential to developing future integrated care, most were not used. Three major themes were identified: (1) organisational versus system focus, (2) leadership and culture, and, (3) community (dis)engagement. DISCUSSION: Several barriers and enablers to the use of the elements were identified and would require addressing in order to make evidence-based changes. CONCLUSION: Despite a clear international policy direction in support of integrated care this study identified a number of significant barriers to its implementation. The study reconfirmed that a focus on all ten elements of health governance is essential to achieve integrated care.

Person-centred care in a digital hospital: observations and perspectives from a specialist rehabilitation setting.

Objective This study investigated use of electronic medical records (eMRs) in a spinal cord injury rehabilitation unit and the implications for person-centred care. Methods This exploratory mixed-methods study conducted 17.5hours of observations of practitioner-patient encounters, 50 patient-experience surveys and 10 focus groups with 53 practitioners. Descriptive statistics and qualitative analysis were integrated into key themes. Results Practitioners in this specialised setting were reconciling the emergent challenges of eMR in practice with the advantages of improved accessibility and documentation legibility. eMR increased task complexity and information retrieval, particularly for nurses. Some documentation was an uneasy fit with the specialised setting, disrupting informal communications and aspects of person-centred care. Conclusions Technological change closely aligned with frontline practice brought expected and unexpected challenges that may resolve over time. Practitioners' persistence and adaptability demonstrated their commitment to person-centred care in the digital environment. The impact of this less visible work of professional discretion seemed to vary, primarily by discipline-specific roles, with nurses experiencing the greatest pressure. What is known about this topic? Integrated electronic medical records (eMRs) bring benefits but challenge person-centred care. What does this paper add? These first insights regarding frontline implementation of eMR in spinal injury rehabilitation suggest nursing challenges when seeking to fit specialised work into the generic eMR. However, most patients reported receiving person-centred care. What are the implications for practitioners? Commitment to person-centred care appears to strengthen practitioners' perseverance with the eMR implementation challenges.

Building compassion literacy: Enabling care in primary health care nursing.

This paper introduces the concept of compassion literacy and discusses its place in nursing within the general practice setting. Compassion literacy is a valuable competency for sustaining the delivery of high quality care. Being compassion literate enables practice nurses to provide compassionate care to their patients and to recognise factors that may constrain this. A compassion literate practice nurse may be more protected from compassion fatigue and its negative consequences. Understanding how to enable self-compassion and how to support the delivery of compassionate care within the primary care team can enhance the care experienced by the patient while improving the positive engagement and satisfaction of the health professionals. The capacity to deliver compassionate care can be depleted by the day-to-day demands of the clinical setting. Compassion literacy enables the replenishing of compassion, but the development of compassion literacy can be curtailed by personal and workplace barriers. This paper articulates why compassion literacy should be an integral aspect of practice nursing and considers strategies for enabling compassion literacy to develop and thrive within the workplace environment. Compassion literacy is also a valuable opportunity for practice nurses to demonstrate their key role within the multidisciplinary team of general practice, directly enhancing the quality of the care delivered.

Incidence, duration and cost of futile treatment in end-of-life hospital admissions to three Australian public-sector tertiary hospitals: a retrospective multicentre cohort study.

OBJECTIVES: To estimate the incidence, duration and cost of futile treatment for end-of-life hospital admissions. DESIGN: Retrospective multicentre cohort study involving a clinical audit of hospital admissions. SETTING: Three Australian public-sector tertiary hospitals. PARTICIPANTS: Adult patients who died while admitted to one of the study hospitals over a 6-month period in 2012. MAIN OUTCOME MEASURES: Incidences of futile treatment among end-of-life admissions; length of stay in both ward and intensive care settings for the duration that patients received futile treatments; health system costs associated with futile treatments; monetary valuation of bed days associated with futile treatment. RESULTS: The incidence rate of futile treatment in end-of-life admissions was 12.1% across the three study hospitals (range 6.0%-19.6%). For admissions involving futile treatment, the mean length of stay following the onset of futile treatment was 15 days, with 5.25 of these days in the intensive care unit. The cost associated with futile bed days was estimated to be $AA12.4 million for the three study hospitals using health system costs, and $A988 000 when using a decision maker's willingness to pay for bed days. This was extrapolated to an annual national health system cost of $A153.1 million and a decision maker's willingness to pay of $A12.3 million. CONCLUSIONS: The incidence rate and cost of futile treatment in end-of-life admissions varied between hospitals. The overall impact was substantial in terms of both the bed days and cost incurred. An increased awareness of these economic costs may generate support for interventions designed to reduce futile treatments. We did not include emotional hardship or pain and suffering, which represent additional costs.

A qualitative follow-up study of diabetes patients' appraisal of an integrated diabetes service in primary care.

As the prevalence of type 2 diabetes continues to escalate, health system reform is seeking better patient outcomes through new models of care that aim to provide the most appropriate care when needed. Patients' experiences of service innovations can shed light on the successes and challenges of implementing change. This paper explores patients' views of a new model of integrated care for patients with type 2 diabetes. A mixed-methods, randomised control trial evaluated a beacon clinic model of care for complex type 2 diabetes led by specialist general practitioners (GPs) in primary care settings in Brisbane, Australia. In this qualitative sub-study conducted between May 2014 and January 2015, 25 consenting participants were re-interviewed after 12 months using semi-structured questions, to explore their experiences of the new model of care. Interview transcripts were analysed thematically. In the first theme, Organised for patient-centred care, patients appraised the structural elements of the clinic. For most, it was an enabling experience which included convenience, flexibility and prompt communication back to the referring GPs. The preferences of a minority were partly realised, as they tried to understand the clinical purpose in comparison with traditional care. The second theme, Positioned as partners in care, revealed the pivotal role of patient-clinician relationships in patients' engagement with advice and self-care. Most found clinicians' collaborative approach engaging and motivating. A small minority with contextual concerns were disappointed with the focus on diabetes and struggled to engage fully with the model. Most participants valued this model of care, which reflects a capacity to manage the variable and complex needs of most patients referred for care. However, multi-level strategies are also needed to enhance patients' engagement with care and the sustainability of integrated diabetes care.

Helping lay carers of people with advanced cancer and their GPs to talk: an exploration of Australian users' views of a simple carer health checklist.

The lay caregiving role is integral to advanced cancer care but places carers' health at risk. A supportive General Practitioner (GP) can help primary lay carers manage their health, if they disclose their concerns. A Needs Assessment Tool for Caregivers (NAT-C) was developed for carers to self-complete and use as the basis of a GP consultation, then tested in a randomised controlled trial. This paper reports a qualitative research study to determine the usefulness and acceptability of the NAT-C in the Australian primary care setting. Convenience samples of 11 carers and 5 GPs were interviewed between September 2010 and December 2011 regarding their experiences with and perceptions of the NAT-C. Open-ended questions were used, and the transcripts were analysed qualitatively to identify themes and patterns. Three major themes were identified: (a) Acceptability of the intervention; (b) Impact of the intervention on the GP-patient relationship; and (c) Place of the intervention in advanced cancer care. This simple checklist was acceptable to carers, although some were uncertain about the legitimacy of discussing their own needs with their GP. Carer-patients could not be certain whether a GP would be willing or equipped to conduct a NAT-C-based consultation. Such consultations were acceptable to most GPs, although some already used a holistic approach while others preferred brief symptom-based consultations. Although the NAT-C was acceptable to most carers and GPs, supportive consultations take time. This raises organisational issues to be addressed so carers can seek and benefit from their GP's support.

The work of local healthcare innovation: a qualitative study of GP-led integrated diabetes care in primary health care.

BACKGROUND: Service delivery innovation is at the heart of efforts to combat the growing burden of chronic disease and escalating healthcare expenditure. Small-scale, locally-led service delivery innovation is a valuable source of learning about the complexities of change and the actions of local change agents. This exploratory qualitative study captures the perspectives of clinicians and managers involved in a general practitioner-led integrated diabetes care innovation. METHODS: Data on these change agents' perspectives on the local innovation and how it works in the local context were collected through focus groups and semi-structured interviews at two primary health care sites. Transcribed data were analysed thematically. Normalization Process Theory provided a framework to explore perspectives on the individual and collective work involved in putting the innovation into practice in local service delivery contexts. RESULTS: Twelve primary health care clinicians, hospital-based medical specialists and practice managers participated in the study, which represented the majority involved in the innovation at the two sites. The thematic analysis highlighted three main themes of local innovation work: 1) trusting and embedding new professional relationships; 2) synchronizing services and resources; and 3) reconciling realities of innovation work. As a whole, the findings show that while locally-led service delivery innovation is designed to respond to local problems, convincing others to trust change and managing the boundary tensions is core to local work, particularly when it challenges taken-for-granted practices and relationships. Despite this, the findings also show that local innovators can and do act in both discretionary and creative ways to progress the innovation. CONCLUSIONS: The use of Normalization Process Theory uncovered some critical professional, organizational and structural factors early in the progression of the innovation. The key to local service delivery innovation lies in building coalitions of trust at the point of service delivery and persuading organizational and institutional mindsets to consider the opportunities of locally-led innovation.

Making sense of change: patients' views of diabetes and GP-led integrated diabetes care.

BACKGROUND: Health system reform is directed towards better management of diabetes. However, change can be difficult, and patients' perspectives are a key aspect of implementing change. OBJECTIVE: This study investigated patients' perceptions and experiences of type 2 diabetes (T2DM), self-care and engagement with GP-led integrated diabetes care. DESIGN: Qualitative interviews were conducted with purposively selected patients with T2DM following their initial medical appointment in the new model of care. Normalization process theory was used to orientate the thematic analysis, to explain the work of implementing change. SETTING: Two specialist GP-based complex diabetes services in primary care in Brisbane, Australia. PARTICIPANTS: Intervention group patients (n = 30) in a randomized controlled trial to evaluate a model of GP-led integrated care for complex T2DM. MAIN OUTCOME MEASURES: Participants' experiences and perceptions of diabetes management and a GP-led model of care. RESULTS: Three themes were identified: sensibility of change, 'diabetic life' and diabetes care alliance. The imperative of change made sense, but some participants experienced dissonance between this rational view and their lived reality. Diabetes invaded life, revealing incongruities between participants' values and living with diabetes. They appreciated a flexible and personalized approach to care. DISCUSSION: Participants responded to advice in ways that seemed rational within the complexities of their life context. Their diabetes partnerships with health professionals coupled providers' biomedical expertise with patients' contextual expertise. CONCLUSIONS: Learning to manage relationships with various health professionals adds to patients' diabetes-related work. Providers need to adopt a flexible, interactive approach and foster trust, to enable better diabetes care.

Systematic review of integrated models of health care delivered at the primary-secondary interface: how effective is it and what determines effectiveness?

Integrated multidisciplinary care is difficult to achieve between specialist clinical services and primary care practitioners, but should improve outcomes for patients with chronic and/or complex chronic physical diseases. This systematic review identifies outcomes of different models that integrate specialist and primary care practitioners, and characteristics of models that delivered favourable clinical outcomes. For quality appraisal, the Cochrane Risk of Bias tool was used. Data are presented as a narrative synthesis due to marked heterogeneity in study outcomes. Ten studies were included. Publication bias cannot be ruled out. Despite few improvements in clinical outcomes, significant improvements were reported in process outcomes regarding disease control and service delivery. No study reported negative effects compared with usual care. Economic outcomes showed modest increases in costs of integrated primary-secondary care. Six elements were identified that were common to these models of integrated primary-secondary care: (1) interdisciplinary teamwork; (2) communication/information exchange; (3) shared care guidelines or pathways; (4) training and education; (5) access and acceptability for patients; and (6) a viable funding model. Compared with usual care, integrated primary-secondary care can improve elements of disease control and service delivery at a modestly increased cost, although the impact on clinical outcomes is limited. Future trials of integrated care should incorporate design elements likely to maximise effectiveness.

Understanding compassion literacy in nursing through a clinical compassion cafe.

This article presents a method of reconnecting and reaffirming with nurses the importance of compassion in health care by using a clinical compassion cafe, which describes nine steps that provide a forum to reaffirm clinicians' core values. This process has the potential to engage clinical staff in a different modality removed from the usual didactic approaches.

Case conferences between general practitioners and specialist teams to plan end of life care of people with end stage heart failure and lung disease: an exploratory pilot study.

BACKGROUND: Most people die of non-malignant disease, but most patients of specialist palliative care services have cancer. Adequate end of life care for people with non-malignant disease requires acknowledgement of their limited prognosis and appropriate care planning. Case conferences between specialist palliative care services and GPs improve outcomes in cancer-based populations. We report a pilot study of case conferences between the patient's GP and specialist staff to facilitate care planning for people with end stage heart failure or non-malignant lung disease in a regional health service in Queensland Australia. METHODS: Single face to face case conferences about patients with a primary diagnosis of advanced heart failure or respiratory failure from non-malignant disease were conducted between a palliative care consultant, a case management nurse and the patient's GP. Annualised rates of service utilisation (emergency department [ED] presentations, ED discharges back to home, hospital admissions, and admission length of stay) before and after case conference were calculated. Content and counts of case conference recommendations, and the rate of adherence to recommendations were also assessed. A process evaluation of case conferences was undertaken. RESULTS: Twenty-three case conferences involving 21 GPs were conducted between November 2011 and November 2012. One GP refused to participate. Ten patients died, three at home. Of 82 management recommendations made, 55 (67%) were enacted. ED admissions fell from 13.9 per annum (pa) to 2.1 (difference 11.8, 95% CI 2.2-21.3, p = 0.001); ED admissions leading to discharge home from 3.9 to 0.4 pa (difference 3.5, 95% CI -0.4-7.5, p = 0.05); hospital admissions from 11.4 to 3.5 pa (difference 7.9, 95% CI 2.2-13.7, p = 0.002); and length of stay from 7.0 to 3.7 days (difference 3.4, 95% CI 0.9-5.8, p = 0.007). Participating health professionals were enthusiastic about the process. CONCLUSIONS: This pilot is the initial step in the development and testing of a complex intervention based on a model of integrated care. A single case conference involving the patient's heart or lung failure team is associated with significant reductions in service utilization, apparently by improving case coordination, enhancing symptom management and assessing and managing carer needs. A randomized controlled trial is being developed. TRIAL REGISTRATION: Australian and New Zealand Controlled Trials Register ACTRN12613001377729: Registered 16/12/2013.

A new model of integrated primary-secondary care for complex diabetes in the community: study protocol for a randomised controlled trial.

BACKGROUND: A new model of complex diabetes care is provided by a multidisciplinary team which incorporates general practitioner (GP) Clinical Fellows supported by an Endocrinologist and diabetes educator within a community-based general practice setting. This study evaluates the health and clinical benefits of the new model of care, assesses the acceptability of the model to patients, GPs and other health professionals, and examines the cost-effectiveness of the model. METHODS/DESIGN: The study is an open, non-inferiority randomised controlled trial with data collected at baseline, 6 and 12 months. Participants are identified from new patients on hospital-based diabetes outpatient clinic waiting lists and new GP referrals. Eligible consenting patients are randomised to either a community practice site (intervention) or a hospital site (usual care). In the intervention model, medical care is led by a GP Clinical Fellow in partnership with an Endocrinologist. Quantitative measures include clinical indicators with HbA1c as the primary outcome; patient-reported outcomes include health-related quality of life, mental health and satisfaction with care. Qualitative methods will be used to explore the perspectives and experiences of patients and providers regarding the new model of care. An economic evaluation will also be undertaken. DISCUSSION: This model of care seeks to improve the quality and safety of healthcare at the interface between the hospital and primary care sectors for patients with complex diabetes. The study will provide empirical evidence about the impact of the model of care on health outcomes, patient and clinician satisfaction, as well as any economic impacts. TRIAL REGISTRATION: Clinical Trials Registry Number: ACTRN12612000380897.

Providing general practice needs-based care for carers of people with advanced cancer: a randomised controlled trial.

BACKGROUND: Carers of patients with advanced cancer often have health and psychosocial needs, which are frequently overlooked. AIM: To meet the needs of carers through a GP consultation directed by a self-completed carer needs checklist. DESIGN AND SETTING: Randomised controlled trial in general practice with recruitment through specialist oncology clinics, in Brisbane, Australia. METHOD: Intervention was (a) carer-GP consultations directed by a self-completed checklist of needs at baseline and 3 months; and (b) a GP-Toolkit to assist GPs to address carer-identified needs. Control group received usual care. Outcome measures were intensity of needs, anxiety and depression, and quality of life. RESULTS: Total recruitment 392. Overall, no significant differences were detected in the number or intensity of need between groups. Compared to controls, intervention participants with baseline clinical anxiety showed improvements in mental wellbeing (P = 0.027), and those with baseline clinical depression had slower development of anxiety (P = 0.044) at 6 months. For those not anxious, physical wellbeing improved at 1 month (P = 0.040). Carers looking after patients with poor functional status had more physical needs (P = 0.037) at 1 month and more psychological and emotional needs at 3 months (P = 0.034). Those caring for less unwell patients showed improved mental wellbeing at 3 months (P = 0.022). CONCLUSION: The intervention did not influence the number or intensity of needs reported by carers of people with advanced cancer. There was limited impact in people with pre-existing clinical anxiety and depression. For the carer of those most severely affected by advanced cancer, it drew attention to the needs arising from the caregiving role.

General Practitioners' perceptions of their role in cancer care and factors which influence this role.

Effective cancer care depends on inter-sectoral and inter-professional communication. General Practitioners (GPs) play a pivotal role in managing the health of most Australians, but their role in cancer care is unclear. This qualitative study explored GPs' views of this role and factors influencing their engagement with cancer care. Twelve metropolitan and non-metropolitan GPs in Queensland, Australia, were recruited between April and May 2008, and three focus groups and one interview were conducted using open-ended questions. The transcripts were analysed thematically. The first theme, GPs' perceptions of their role, comprised subthemes corresponding to four phases of the trajectory. The second theme, Enhancing GPs' involvement in ongoing cancer care, comprised subthemes regarding enhanced communication and clarification of roles and expectations. GPs' role in cancer care fluctuates between active advocacy during diagnosis and palliation, and ambivalent redundancy in between. The role is influenced by socioeconomic, clinical and geographical factors, patients' expectations and GPs' motivation. Not all participants wanted an enhanced role in cancer care, but all valued better specialist-GP communication. Role clarification is needed, together with greater mutual trust between GPs and specialists. Key needs included accessible competency training and mentoring for doctors unfamiliar with the system. Existing system barriers and workforce pressures in general practice must be addressed to improve the sharing of cancer care. Only one metropolitan focus group was conducted, so saturation of themes may not have been reached. The challenges of providing cancer care in busy metropolitan practices are multiplied in non-metropolitan settings with less accessible resources and where distance affects specialist communication. Non-metropolitan GPs learn from experience how to overcome referral and communication challenges. While the GPs identified solutions to their concerns, the role can be daunting. GPs are motivated to provide long-term care for their patients, but need to be acknowledged and supported by the health system.

Consultation etiquette in general practice: a qualitative study of what makes it different for lay cancer caregivers.

BACKGROUND: It is commonplace for lay caregivers to overlook their own health concerns when supporting someone with advanced cancer. During this time, caregivers' needs as patients are often marginalised by health professionals, including General Practitioners (GPs), who may miss the breadth of caregivers' needs by focusing on the practicalities of caregiving. GPs traditionally rely on patients to raise their concerns, and then respond to these concerns, but caregivers as patients may be disinclined to cue their GP. The norms of engagement when caregivers consult their GP are less defined, and how they interact with their GP regarding their own health is under-explored. This sub-study investigates the norms, assumptions and subtleties which govern caregiver-GP consultations, and explores factors affecting their interaction regarding caregivers' own health concerns. METHODS: We conducted semi-structured interviews with six lay caregivers and 19 health professionals in Brisbane, Australia, and analyzed the interview transcripts thematically. RESULTS: Traditional norms of engagement are subjected to assumptions and expectations which caregivers and GPs bring to the consultation. Practice pressures also influence both parties' capacity and willingness to discuss caregivers' health. Nonetheless, some GPs monitor caregivers' health opportunistically. Their interaction is enhanced by the quality of the caregiver-GP relationship and by the GP's skills. CONCLUSIONS: Caregivers are caught in a paradox whereby their health needs may become subsumed by the care recipient's needs in a setting where patient needs are normally scrutinised and supported. Caregivers may not raise their health concerns with their GP, who instead may need to cue them that it is timely and safe to do so. The routine use of a prompt may help to address caregivers' needs systematically, but it needs to be complemented by GPs' desire and capacity to engage with patients in a caregiving role. The potential difference GPs can make to the health of these patients is substantial.

A GP Caregiver Needs Toolkit versus usual care in the management of the needs of caregivers of patients with advanced cancer: a randomized controlled trial.

BACKGROUND: Caring for a person with progressive cancer creates challenges for caregivers. However the needs of caregivers are often not assessed or recognised by health care providers. Research is also lacking in this area, with little knowledge relating to effective strategies to address the specific needs of caregivers. This paper outlines a study protocol aimed at developing and evaluating the effectiveness of a general practice-based intervention to better meet the needs of caregivers of patients with advanced cancer. METHODS/DESIGN: Two hundred and sixty caregivers will be randomised into each of two arms of the intervention (520 participants in total) through patients with advanced cancer attending medical and radiation oncology outpatient clinics at two tertiary hospital sites. Consenting caregivers will be followed up for six months, and telephone surveyed at baseline, 1, 3 and 6 months following their entry into the study or until the patient's death, whichever occurs first. Assessment and management of the unmet needs of caregivers in the intervention arm will be facilitated through a specifically developed general practice-based strategy; caregivers in the control group will receive usual care. Qualitative interviews will be conducted with a sample of up to 20 caregivers and 10 GPs at the conclusion of their participation, to explore their views regarding the usefulness of the intervention. DISCUSSION: This study will determine whether systematic assessment of caregiver needs supported by caregiver-specific information for General Practitioners is effective in alleviating the unmet needs experienced by caregivers caring for patients with advanced cancer. TRIAL REGISTRATION NUMBER: ISRCTN: ISRCTN43614355.