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Background driving disruptions have significant impact on individuals living with dementia, their care partners and family members. Previous studies show that for older people with dementia, stopping driving is one of the hardest things that they cope with. To date, no studies exist that address the expressed needs and experiences of people living with young onset dementia (YOD) who are adjusting to life without driving, whose needs are not well understood and whose needs might be expected to differ from those of older people with dementia. Methods a multi-perspective, qualitative descriptive phenomenological approach was undertaken. A topic guide was developed in consultation with lived experience experts. In-depth interviews (n  = 18) with 10 people with YOD and eight family caregivers were conducted, to elicit lived experiences in relation to changing and cessation of driving. Interviews were recorded and transcribed verbatim. Data were analysed using a hybrid approach, employing deductive and inductive coding. Results core findings reflected the impact and coping strategies employed by people with YOD and their care partners across four themes: (i) losses and burdens, (ii) the unique challenges of YOD, (iii) coping and adjustment and (iv) how to meet needs. Conclusions driving disruptions often come at a time when people living with YOD are likely to have significant financial and family commitments, or they/their partners may be employed or raising a family, negatively impacting individual's roles and self-identities. Intervention to support emotional and practical adjustment and reduce social isolation is essential for coping. [ABSTRACT FROM AUTHOR]

Previous research on general practitioners' (GPs') involvement in end‐of‐life care has largely focused on a specific aspect of care or has provided broad overviews that failed to capture individual variations in patient management. This qualitative study aimed to explore Australian GPs' feedback and reflections on the individual‐level care provided for patients in their last year of life. The findings of the study were drawn from a nation‐wide survey of GPs' experiences in end‐of‐life care. We analysed responses from 63 GPs for 267 of the 272 reported deaths. Factors influencing delivery of optimal end‐of‐life care reported by GPs were categorised into four groups: patient‐related factors, carer‐related factors, interactions between GPs and patients/carer‐related factors and broader health system issues. Each group included both barriers and facilitators. Our study highlighted importance of the emotional dimensions of therapeutic relationships with patients and their family, availability and capacity of family support and smooth communication and continuity of care between GPs and hospitals in delivery of optimal end‐of‐life care. Lack of these facilitators, misconceptions of palliative care and conflicts on implementing care plans among patients and their family tended to impede delivery of such care. On the basis of our findings in the present study and previous literature, we conclude that improved end‐of‐life care in general practice requires comprehensive approaches to supporting both the GP and family to provide care in patients' preferred place, such as enhanced palliative care training and improved availability of external support for GPs, higher levels of hospital‐based services reaching into community settings and broader community‐based resources for families beyond simply the healthcare system. [ABSTRACT FROM AUTHOR]

Residential aged care facilities (RACFs) face severe challenges in the provision of high-quality end of life care. A pilot of a nurse-led end-of-life palliative care consultative service (CiMaS) supporting RACFs was conducted in three RACFs in the West Moreton Region of Queensland, Australia, from May 2018. We conducted a mixed method evaluation comprising: a chart audit of deaths in the 12 months before and after the intervention; focus groups with RACF staff; and interviews with facility directors, primary family members and GPs. Quantitative and Qualitative data were assessed separately with statistical and thematic analyses respectively. The RACFs cared for 277 residents. There were 24 pre-intervention deaths and 44 in the intervention period (28 (64%) referred to CiMaS). There was widespread support for the service. Families felt supported and knowledgeable about what was happening. Care plans were almost always recorded in health records. Patients' symptoms appeared to be better recognised and managed. Staff and Facility managers felt more support than previously, with more responsive and reliable out of hours support. There were significant care improvements in patients not referred to CiMaS, suggesting a learning effect. GPs observed improvements in nursing staff confidence and support to families. Transfers to hospitals fell by two-thirds for both referred and non-referred patients compared with the year before implementation. The program was both efficient and effective. [ABSTRACT FROM AUTHOR]

Primary care settings are ideal for initiating advance care planning (ACP) conversations and assessing palliative and supportive care needs. However, time constraints and a lack of confidence to sensitively and efficiently initiate such discussions are noted barriers. The Advance Project implemented a national multicomponent training package to support Australian general practice nurses (GPNs) to work with GPs to initiate ACP and palliative care conversations in their practice. This paper reports on semistructured interviews conducted with 20 GPNs to explore barriers and facilitators to implementing the Advance Project model. Participants identified a range of factors that affected implementation, including lack of time, limited support from colleagues, lack of knowledge about systems and funding processes in general practice and a need for better alignment of the Advance Project resources and practices with general practice information management platforms. Barriers related to professional roles, particularly the lack of clarity and/or limitations in the scope of practice of GPNs, highlighted the importance of defining and supporting the roles that different primary health practice staff could play to support implementation of the model. The findings underline the need for complementary training in the Advance Project model for GPs and practice managers to enable a team-based approach to implementation. Primary care professionals often report barriers to initiating advance care planning (ACP) and palliative care (PC), affecting patients' end-of-life care experiences. This paper provides evidence to suggest that nurses working in general practice can be trained and are willing to initiate ACP and PC. By understanding barriers and facilitators to early implementation of the Advance Project model through a theoretical lens, changes were identified that could lead to successful implementation of ACP/PC assessment tools in general practice settings. [ABSTRACT FROM AUTHOR]

Background Prognostic uncertainty and the need for proxy decision-making owing to cognitive impairment in advanced dementia, adds complexity to end-of-life care planning within the long-term care setting. Case conferences provide a structure to facilitate difficult conversations and an opportunity for family and clinicians to engage in prospective planning, and reach agreement on goals of end-of-life care. Objective To explore interactions between multidisciplinary healthcare clinicians and families during facilitated case conferences on end-of-life care for residents with advanced dementia. Methods A qualitative approach was used. Transcripts of audio-recorded case conferences facilitated by a trained registered nurse were coded by two independent researchers and analysed inductively. Transcripts were selected from an available pool until thematic saturation was reached. Emerging themes were confirmed with the wider research group. Results Thematic saturation was reached after 25 transcripts. An overarching theme concerned the ways in which clinicians and families bridged medical and person-centred perspectives. Subthemes included: details of day-to-day care versus establishing overall goals of care; expression of emotion versus retreat from emotion; and missed opportunities versus expressed cues. Successful facilitation served to 'bridge the gap' between family and clinicians. Conclusion Facilitation of case conferences for residents with advanced dementia should focus on ensuring that: clinicians do not miss opportunities to discuss end-of-life care; discussions on the minutiae of care regularly return to the resident's broader goals of care; and information on dementia and treatments provided by clinicians is integrated with advice by family members regarding the resident's premorbid values and likely preferences. [ABSTRACT FROM AUTHOR]

The study objective was to explore the characteristics of rural general practice which exemplify optimal end‐of‐life (EOL) care from the perspective of people diagnosed with cancer, their informal carers and general practitioners (GPs); and the extent to which consumers perceived that actual EOL care addressed these characteristics. Semi‐structured telephone interviews were conducted with six people diagnosed with cancer, three informal carers and four GPs in rural and regional Australia. Using a social constructionist approach, thematic analysis was undertaken. Seven characteristics were perceived to be essential for optimal EOL care: (1) commitment and availability, (2) building of therapeutic relationships, (3) effective communication, (4) psychosocial support, (5) proficient symptom management, (6) care coordination and (7) recognition of the needs of carers. Most GPs consistently addressed these characteristics. Comprehensive EOL care that meets the needs of people dying with cancer is not beyond the resources of rural and regional GPs and communities. [ABSTRACT FROM AUTHOR]

Background: End-of-life discussions often are not initiated until close to death, even in the presence of life-limiting illness or frailty. Previous research shows that doctors may not explicitly verbalize approaching end-of-life in the foreseeable future, despite shifting their focus to comfort care. This may limit patients' opportunity to receive information and plan for the future. General Practitioners (GPs) have a key role in caring for increasing numbers of patients approaching end-of-life.Objective: To explore GPs' thought processes when deciding whether to initiate end-of-life discussions.Methods: A qualitative approach was used. We purposively recruited 15 GPs or GP trainees from South-East Queensland, Australia, and each participated in a semi-structured interview. Transcripts were analyzed using inductive thematic analysis.Results: Australian GPs believe they have a responsibility to initiate end-of-life conversations, and identify several triggers to do so. Some also describe caution in raising this sensitive topic, related to patient, family, cultural and personal factors.Conclusions: These findings enable the development of approaches to support GPs to initiate end-of-life discussions that are cognizant both of GPs' sense of responsibility for these discussions, and factors that may contribute to caution initiating them, such as anticipated patient response, cultural considerations, societal taboos, family dynamics and personal challenges to doctors. [ABSTRACT FROM AUTHOR]

Background As doctors who provide care across the life-course, general practitioners (GPs) play a key role in initiating timely end-of-life discussions. Nonetheless, these discussions are often not initiated until close to death. Given the ageing of the population, GPs will be confronted with end-of-life care more often, and this needs to become a core skill for all GPs. Objective To describe GPs' approach to initiating end-of-life discussions. Methods Fifteen GPs or GP trainees from South-East Queensland, Australia, were purposively recruited to participate in a semi-structured interview. We analysed transcripts using a thematic analysis. Results GPs' approach to initiating end-of-life discussions was summarized by four themes: (1) Preparing the ground; (2) finding an entry point; (3) tailoring communication and (4) involving the family. Conclusions Emphasis on the doctor–patient relationship; assessing patient readiness for end-of-life discussions; and sensitive information delivery is consistent with factors previously reported to be important to both GPs and patients in this context. Our findings provide a framework for GPs initiating end-of-life discussions, which must be tailored to patient and GP personality factors. Further research is required to evaluate its outcomes. [ABSTRACT FROM AUTHOR]

With the aging population, the tide of chronic disease is rising with attendant increases in health service need. Integrated care and patient-centred approaches, which established partnerships between a regional Hospital and health service (HHS), the local primary health network and local general practitioners (GPs), were identified as exemplars of an approach needed to support growing community health needs. This paper summarises the findings from a process evaluation of four GP–specialist care integration programs with the aim of identifying recommendations for embedding integrated GP–specialist care into routine practice within the HHS. The process evaluation of the integration programs drew on input from a multidisciplinary expert advisory group and data collected through face-to-face semi-structured interviews with key stakeholders, as well as surveys of participating GPs and patients. Overarching findings were identified and grouped under six themes: interdisciplinary teamwork; communication and information exchange; the use of shared care guidelines or pathways; training and education; access and accessibility; and funding. Within each theme, key challenges and enablers emerged. The findings of this study highlight benefits and challenges associated with the establishment of integrated care between primary and secondary care providers, leading to the development of key recommendations for routine integration. [ABSTRACT FROM AUTHOR]

Background: Some patients do not receive adequate pain and symptom relief at the end of life, causing distress to patients, families and healthcare professionals. It is unclear whether undertreatment of symptoms occurs, in part, because of nurses' concerns about legal and/or disciplinary repercussions if the patient dies after medication is administered. Aim: The aim was to explore nurses' experiences and knowledge of the law relating to the provision of end-of-life pain and symptom relief. Design: Semi-structured interviews with nurses were assessed using a six-stage hybrid thematic analysis technique. Setting/participants: Four face-to-face and 21 telephone interviews were conducted with nurses who routinely prescribed and/or administered pain and symptom relief to patients approaching the end of their lives in Queensland and New South Wales, Australia. Results: While many nurses had no personal experiences with legal or professional repercussions after a patient had died, the fear of hastening death and being held accountable was frequently discussed and regarded as relevant to the provision of inadequate pain and symptom relief. Concerns included potential civil or criminal liability and losing one's job, registration or reputation. Two-thirds of participants believed that pain relief was sometimes withheld because of these legal concerns. Less than half of the interviewed nurses demonstrated knowledge of the doctrine of double effect, the legal protection for health professionals who provide end-of-life pain and symptom relief. Conclusion: Education is urgently required to strengthen nurses' knowledge of the legal protections supporting the provision of appropriate palliative medication, thereby improving their clinical practice with end-of-life patients. [ABSTRACT FROM AUTHOR]

Background and objective Commitment to providing whole-person care (WPC) is a core value of general practice. The current Health Care Homes (HCHs) trial reforms Australian primary care with the aim of improving complex and chronic disease care. The aim of this study was to clarify how Australian general practitioners (GPs) anticipate the government's HCHs will affect WPC. Method Qualitative semi-structured interviews with 20 Australian GPs and general practice registrars were conducted between May and November 2018. Results GPs supported the principles underlying the Medical Home concept, believing these could assist WPC by facilitating flexibility, continuity and scope of care and team involvement. However, many had serious misgivings about the government's HCH trial, believing that aspects of capitation funding and limitation of the trial to chronic disease management may impede WPC. They also reported practical struggles with the trial. Discussion GPs anticipate a mixed impact of HCHs on WPC and potentially on the therapeutic relationship underlying WPC. They identified practical struggles previous literature anticipated. These findings provide on-the-ground evidence of GPs' views about HCHs and WPC, which stakeholders planning the ongoing direction of Australian primary care should carefully consider. [ABSTRACT FROM AUTHOR]

Objective: Psychological therapies combined with medication are effective treatments for depression and anxiety in patients with cancer. However, the psycho‐oncology workforce is insufficient to meet patient need and is hard to access outside of the major cities. To bridge this gap, innovative models of care are required. Implementation of a new model of care requires attention to the facilitators and barriers. The aim of this study was to explore stakeholders' attitudes to the feasibility and acceptability of a community‐based, shared care model for the treatment of depression and anxiety. Methods: Semi‐structured interviews were conducted with community‐based clinical psychologists (n = 10), general practitioners (n = 6), and hospital‐based psychologists working in psycho‐oncology (n = 9). Framework analysis was conducted to identify key themes. Results: All stakeholders perceived the model as feasible and acceptable. Potential barriers/facilitators to implementation were summarised under six key themes: (a) initiative, ownership, and autonomy; (b) resources; (c) pathway establishment; (d) support; (e) skill acquisition; and (f) patient engagement. Facilitators included quality communication between health professionals across primary and tertiary care and appropriate education and support for community‐based clinicians. Conclusions: This in‐depth exploration of Australian health professionals' perceptions of the feasibility and acceptability of a community‐based model of psycho‐oncology care revealed that most clinicians were willing to adopt the proposed changes into practice. An RCT of a shared care intervention for depressed patients with cancer is needed. [ABSTRACT FROM AUTHOR]

This paper examines nurse navigation as a model of integrated care operating across primary and secondary healthcare settings. A two-phase qualitative study involving a focus group with seven nurse navigators (NNs) to explore their understandings and perceptions of the role, followed by in-depth interviews with three NNs to examine current practice, was undertaken in Queensland, Australia. NNs' role spanned a continuum of patient and population care, and involved engagement in clinical integration, coordinating patient care and providing education and points-of-contact for healthcare professionals. NNs also engaged in professional integration, fostering interdisciplinary collaboration, education and connections between healthcare professionals, while promoting integrated care across care settings. NNs were enabled through the establishment of relationships, trust and shared communication between stakeholders. NNs' work transcended traditional clinical boundaries, operating horizontally across silos and specialties, which allowed them to avoid (some) system shortfalls. By contributing to a culture of integration, NNs can potentially support more sustainable integrated care practices that extend relationships between healthcare professionals and beyond individual patients. Increasing our understanding of nurse navigation as a model of integrated care, this study illustrates the complexity, diversity and breadth of the role and its ability to contribute to broader, system-wide integration. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

There is no standard policy regarding the regulatory or institutional approval of N-of-1 trials in the United States. The objective of this study was to examine whether institutional review boards (IRBs) accredited by the Association for the Accreditation of Human Research Protection Programs (AAHRPP) consider N-of-1 trials as meeting the definition of human subjects research (45CFR46.102) and requiring IRB approval. A questionnaire was distributed via email to 170 AAHRPP-accredited IRBs in the United States. Responses were analyzed using statistical and qualitative methods. Nineteen of 59 respondents reported viewing N-of-1 trials as research. Twelve respondents reported having a policy regarding N-of-1 trials, and in all cases, such policies did not consider N-of-1 trials as meeting the definition of research. This topic deserves wider examination in the IRB literature and community to inform policies and guidance as N-of-1 trials become more common in the pursuit of personalized, precision medicine. [ABSTRACT FROM AUTHOR]

Background: Palliative care focuses on supporting patients diagnosed with advanced, incurable disease; it is 'family centered', with the patient and their family (the unit of care) being core to all its endeavours. However, approximately 30-50 % of carers experience psychological distress which is typically under recognised and consequently not addressed. Family meetings (FM) are recommended as a means whereby health professionals, together with family carers and patients discuss psychosocial issues and plan care; however there is minimal empirical research to determine the net effect of these meetings and the resources required to implement them systematically. The aims of this study were to evaluate: (1) if family carers of hospitalised patients with advanced disease (referred to a specialist palliative care in-patient setting or palliative care consultancy service) who receive a FM report significantly lower psychological distress (primary outcome), fewer unmet needs, increased quality of life and feel more prepared for the caregiving role; (2) if patients who receive the FM experience appropriate quality of end-of-life care, as demonstrated by fewer hospital admissions, fewer emergency department presentations, fewer intensive care unit hours, less chemotherapy treatment (in last 30 days of life), and higher likelihood of death in the place of their choice and access to supportive care services; (3) the optimal time point to deliver FM and; (4) to determine the cost-benefit and resource implications of implementing FM meetings into routine practice. Methods: Cluster type trial design with two way randomization for aims 1-3 and health economic modeling and qualitative interviews with health for professionals for aim 4. Discussion: The research will determine whether FMs have positive practical and psychological impacts on the family, impacts on health service usage, and financial benefits to the health care sector. This study will also provide clear guidance on appropriate timing in the disease/care trajectory to provide a family meeting. Trial registration: Australian New Zealand Clinical Trials Registry ACTRN12615000200583 . [ABSTRACT FROM AUTHOR]

The article presents a study which investigated the views of primary care patients of Medicare-funded team care in chronic disease management (CDM) in Australia. The researchers detail the study design, participants and setting, data collection procedure and outcomes. It implies that patients are likely to engage with a structured team care approach to CDM driven by personal obligation and sufficient financial incentive.

The article offers information on a study concerning the promotion and development of palliative care in communities by the European Association Care Taskforce. It mentions the survey to detect barriers and opportunities in developing of health policies and practices of palliative care in communities. It shows that the inability to identify palliative care patients in the community was a major barrier for health care development.

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. [ABSTRACT FROM AUTHOR]

Doctors face many barriers accessing health care. Even after a doctor has adopted the patient role, quality health care can remain elusive. This study investigated the consultation between the treating doctor and the doctorpatient. We aimed to determine what doctors want within the consultation, their preferred consultation method. This qualitative study involved 37 GPs who participated in one of six independently facilitated focus groups. Data were recorded, transcribed and analysed for recurrent themes using an iterative inductive framework. Participants emphasised the importance of, and the difficulty in, establishing a relationship with a GP. This involved determining who to see and when to go to the doctor. Specific ways of strengthening the doctor-patient relationship were discussed, including understanding the illness experience, acknowledging the whole patient, setting boundaries, providing holistic care, developing rapport and participating in shared decision making. Empathy was especially important. Analysis revealed strong similarities with the 'patient-centred consultation method'. Understanding the preferred consultation method for doctors will assist doctors in providing quality care to their peers. This is an important step in enhancing health access for doctors. Doctors want what patients want: care delivered within a patient-centred consultation. These insights may help other health professionals when treating or receiving care from their colleagues. [ABSTRACT FROM AUTHOR]

Background: As doctors who provide care across the life-course, general practitioners (GPs) play a key role in initiating timely end-of-life discussions. Nonetheless, these discussions are often not initiated until close to death. Given the ageing of the population, GPs will be confronted with end-of-life care more often, and this needs to become a core skill for all GPs.Objective: To describe GPs' approach to initiating end-of-life discussions.Methods: Fifteen GPs or GP trainees from South-East Queensland, Australia, were purposively recruited to participate in a semi-structured interview. We analysed transcripts using a thematic analysis.Results: GPs' approach to initiating end-of-life discussions was summarized by four themes: (1) Preparing the ground; (2) finding an entry point; (3) tailoring communication and (4) involving the family.Conclusions: Emphasis on the doctor-patient relationship; assessing patient readiness for end-of-life discussions; and sensitive information delivery is consistent with factors previously reported to be important to both GPs and patients in this context. Our findings provide a framework for GPs initiating end-of-life discussions, which must be tailored to patient and GP personality factors. Further research is required to evaluate its outcomes. [ABSTRACT FROM AUTHOR]