Dataset Information

How can primary care enhance end-of-life care for liver disease? Qualitative study of general practitioners' perceptions and experiences.

ABSTRACT: BACKGROUND:Liver disease is the third most common cause of premature death in the UK. The symptoms of terminal liver disease are often difficult to treat, but very few patients see a palliative care specialist and a high proportion die in hospital. Primary care has been identified as a setting where knowledge and awareness of liver disease is poor. Little is known about general practitioners' (GPs) perceptions of their role in managing end-stage liver disease. OBJECTIVE:To explore GPs' experiences and perceptions of how primary care can enhance end-of-life care for patients with liver disease. DESIGN:Qualitative interview study, thematic analysis. PARTICIPANTS:Purposive sample of 25 GPs from five regions of England. RESULTS:GPs expressed a desire to be more closely involved in end-of-life care for patients with liver disease but identified a number of factors that constrained their ability to contribute. These fell into three main areas; those relating directly to the condition, (symptom management and the need to combine a palliative care approach with ongoing medical interventions); issues arising from patients' social circumstances (stigma, social isolation and the social consequences of liver disease) and deficiencies in the organisation and delivery of services. Collaborative working with support from specialist hospital clinicians was regarded as essential, with GPs acknowledging their lack of experience and expertise in this area. CONCLUSIONS:End-of-life care for patients with liver disease merits attention from both primary and secondary care services. Development of care pathways and equitable access to symptom relief should be a priority.

SUBMITTER: Standing H

PROVIDER: S-EPMC5588936 | biostudies-literature | 2017 Sep

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

How can primary care enhance end-of-life care for liver disease? Qualitative study of general practitioners' perceptions and experiences.

Standing Holly H Jarvis Helen H Orr James J Exley Catherine C Hudson Mark M Kaner Eileen E Hanratty Barbara B

BMJ open 20170901 8

<h4>Background</h4>Liver disease is the third most common cause of premature death in the UK. The symptoms of terminal liver disease are often difficult to treat, but very few patients see a palliative care specialist and a high proportion die in hospital. Primary care has been identified as a setting where knowledge and awareness of liver disease is poor. Little is known about general practitioners' (GPs) perceptions of their role in managing end-stage liver disease.<h4>Objective</h4>To explore ...[more]

PMID: 28864486

Similar Datasets

Project description:BackgroundModern palliative care focuses on enabling patients to spend their remaining time at home, and dying comfortably at home, for those patients who want it. Compared to many European countries, few die at home in Norway. General practitioners' (GPs') involvement in palliative care may increase patients' time at home and achievements of home death. Norwegian GPs are perceived as missing in this work. The aim of this study is to explore GPs' experiences in palliative care regarding their involvement in this work, how they define their role, and what they think they realistically can contribute towards palliative patients.MethodsWe performed focus group interviews with GPs, following a semi-structured interview guide. We included four focus groups with a total of 25 GPs. Interviews were recorded and transcribed verbatim. We performed qualitative analysis on these interviews, inspired by interpretative phenomenological analysis.ResultsStrengths of the GP in the provision of palliative care consisted of characteristics of general practice and skills they relied on, such as general medical knowledge, being coordinator of care, and having a personal and longitudinal knowledge of the patient and a family perspective. They generally had positive attitudes but differing views about their formal role, which was described along three positions towards palliative care: the highly involved, the weakly involved, and the uninvolved GP.ConclusionGPs have evident strengths that could be important in the provision of palliative care. They rely on general medical knowledge and need specialist support. They had no consensus about their role in palliative care. Multiple factors interact in complex ways to determine how the GPs perceive their role and how involved they are in palliative care. GPs may possess skills and knowledge complementary to the specialized skills of palliative care team physicians. Specialized teams with extensive outreach activities should be aware of the potential they have for both enabling and deskilling GPs.

Project description:BackgroundWith more patients in need of oncological care, there is a growing interest to transfer survivorship care from specialist to general practitioner (GP). The ongoing I CARE study was initiated in 2015 in the Netherlands to compare (usual) surgeon- to GP-led survivorship care, with or without access to a supporting eHealth application (Oncokompas).MethodsSemi-structured interviews were held at two separate points in time (i.e. after 1- and 5-years of care) to explore GPs' experiences with delivering this survivorship care intervention, and study its implementation into daily practice. Purposive sampling was used to recruit 17 GPs. Normalisation Process Theory (NPT) was used as a conceptual framework.ResultsOverall, delivering survivorship care was not deemed difficult and dealing with cancer repercussions was already considered part of a GPs' work. Though GPs readily identified advantages for patients, caregivers and society, differences were seen in GPs' commitment to the intervention and whether it felt right for them to be involved. Patients' initiative with respect to planning, absence of symptoms and regular check-ups due to other chronic care were considered to facilitate the delivery of care. Prominent barriers included GPs' lack of experience and routine, but also lack of clarity regarding roles and responsibilities for organising care. Need for a monitoring system was often mentioned to reduce the risk of non-compliance. GPs were reticent about a possible future transfer of survivorship care towards primary care due to increases in workload and financial constraints. GPs were not aware of their patients' use of eHealth.ConclusionsGPs' opinions and beliefs about a possible future role in colon cancer survivorship care vary. Though GPs recognize potential benefit, there is no consensus about transferring survivorship care to primary care on a permanent basis. Barriers and facilitators to implementation highlight the importance of both personal and system level factors. Conditions are put forth relating to time, reorganisation of infrastructure, extra personnel and financial compensation.Trial registrationNetherlands Trial Register; NTR4860 . Registered on the 2nd of October 2014.

Project description:BackgroundIdentifying essential competencies in end-of-life care, as well as general practitioners' (GPs) confidence in these competencies, is essential to guide training and quality improvement efforts in this domain.AimTo determine which competencies in end-of-life care are considered important by GPs, to assess GPs' confidence in these competencies in a European context and their reasons to refer terminally ill patients to a specialist.Design and settingCross-sectional postal survey involving a stratified random sample of 2000 GPs in Switzerland in 2014.MethodSurvey development was informed by a previous qualitative exploration of relevant end-of-life GP competencies. Main outcome measures were GPs' assessment of the importance of and confidence in 18 attributes of end-of-life care competencies, and reasons for transferring care of terminally-ill patients to a specialist. GP characteristics associated with main outcome measures were tested using multivariate regression models.ResultsThe response rate was 31%. Ninety-nine percent of GPs considered the recognition and treatment of pain as important, 86% felt confident about it. Few GPs felt confident in cultural (16%), spiritual (38%) and legal end-of-life competencies such as responding to patients seeking assisted suicide (35%) although more than half of the respondents regarded these competencies as important. Most frequent reasons to refer terminally ill patients to a specialist were lack of time (30%), better training of specialists (23%) and end-of-life care being incompatible with other duties (19%). In multiple regression analyses, confidence in end-of-life care was positively associated with GPs' age, practice size, home visits and palliative training.ConclusionsGPs considered non-somatic competencies (such as spiritual, cultural, ethical and legal aspects) nearly as important as pain and symptom control. Yet, few GPs felt confident in these non-somatic competencies. These findings should inform training and quality improvement efforts in this domain, in particular for younger, less experienced GPs.

Project description:BackgroundIntegrated care unites funding, administrative, organisational, service delivery and clinical levels to create connectivity, alignment and collaboration within and between care delivery and prevention sectors. It aims to improve efficiency by avoiding unnecessary duplication of resources. Consequently, implementing integrated care is increasingly important; however, there are many barriers and how we teach healthcare practitioners to work across systems is under-researched. This paper explores an innovative educational curriculum, the Programme for Integrated Child Health (PICH).MethodsThe PICH involved an experiential learning approach supported by taught sessions on specific issues relevant to integrated care. A qualitative study was conducted by interviewing 23 participants using semi-structured one-to-one interviews. Participants included trainees (general practice, paediatrics) and programme mentors. Data was thematically analysed.ResultsResults are coded under three main themes: integrated care curriculum components, perceptions of a curriculum addressing integrated care and organisational change, and personal and professional learning. The data highlights the importance of real-world projects, utilising healthcare data, and considering patient perspectives to understand and develop integrated practices. Trainees received guidance from mentors but, more crucially learnt from, with, and about one another. They learnt about the context in which GPs and paediatricians work and developed a deeper understanding through which integrated services could be meaningfully developed.ConclusionsThis study explored participants' experiences and can be taken forward by educationalists to design curricula to better prepare healthcare practitioners to work collaboratively. The emergence of integrated care brings about challenges for traditional pedagogical approaches as learners have to re-align their discipline-specific approaches with evolving healthcare structures. PICH demonstrated that trainees acquired knowledge through real-word projects and experiential learning; and that this facilitated integration, empowering doctors to become leaders of organisational change. However, there are also many challenges of implementing integrated curricula which need to be addressed, including breaking down professional silos and integrating resourceful healthcare. This study begins to demonstrate the ability of an integrated curriculum to support trainees to work collaboratively, but further work is needed to develop the wider efficacy of the programme incorporating other professional groups, and to assess its longer term impact.

Project description:BackgroundAlthough end-of-life care has become an issue of great clinical and public health concern in Europe and beyond, we lack population-based nationwide data that monitor and compare the circumstances of dying and care received in the final months of life in different countries. The European Sentinel GP Networks Monitoring End of Life Care (EURO SENTIMELC) study was designed to describe and compare the last months of life of patients dying in different European countries. We aim to describe how representative GP networks in the EURO SENTIMELC study operate to monitor end of life care in a country, to describe used methodology, research procedures, representativity and characteristics of the population reached using this methodology.MethodsNationwide representative Networks of General Practitioners (GPs)--ie epidemiological surveillance systems representative of all GPs in a country or large region of a country--in Belgium, The Netherlands, Italy and Spain continuously registered every deceased patient (>18 year) in their practice, using weekly standardized registration forms, during two consecutive years (2009-2010).ResultsA total of 6858 deaths were registered of which two thirds died non-suddenly (from 62% in The Netherlands to 69% in Spain), representative for the GP populations in the participating countries. Of all non-sudden deaths, between 32% and 44% of deaths were aged 85 or older; between 46% and 54% were female, and between 23% and 49% died at home. Cancer was cause of death in 37% to 53% of non-sudden death cases in the four participating countries.ConclusionVia the EURO SENTI-MELC methodology, we can build a descriptive epidemiological database on end-of-life care provision in several EU countries, measuring across setting and diseases. The data can serve as baseline measurement to compare and monitor end-of-life care over time. The use of representative GP networks for end-of-life care monitoring has huge potential in Europe where several of these networks are operational.

Dataset Information

How can primary care enhance end-of-life care for liver disease? Qualitative study of general practitioners' perceptions and experiences.

Publications

How can primary care enhance end-of-life care for liver disease? Qualitative study of general practitioners' perceptions and experiences.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets