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Palliative care in its own discourse: a focused ethnography of professional messaging in palliative care.

ABSTRACT: BACKGROUND:Despite 50?years of modern palliative care (PC), a misunderstanding of its purpose persists. The original message that PC is focused on total care, helping to live until the person dies, is being replaced and linked to feelings of fear, anxiety and death, instead of compassion, support or appropriate care. Society is still afraid to speak its name, and specialized units are identified as "places of death" as opposed to "places of life" meant to treat suffering. This issue is prohibitive to the implementation and development of PC policies worldwide. It is imperative to identify what message PC professionals are relaying to patients and other health care specialists and how that message may condition understandings of the right to access PC. METHODS:A qualitative study, employing focused ethnography and participant observation (PO) of the daily interaction of PC professionals with patients and family members in three different PC services. Two researchers independently conducted a thematic analysis, followed by member checking with participants. RESULTS:A total of 242?h of participant observation revealed the following messages sent by PC professionals in their daily interaction with patients and families: i) We are focused on your wellbeing; ii) You matter: we want to get to know you; iii) Your family is important to us. CONCLUSION:The complexity of PC discourses contributes to the difficulty of identifying a clear universal message between PC professionals, patients and families. The PC professionals observed transmit a simple message focused on their actions rather than their identity, which may perpetuate some social/cultural misunderstandings of PC. It seems there is a common culture, based on the same values and attitudes, within the messages that PC professionals transmit to patients and their families. PC teams are characterised by their availability.

SUBMITTER: Reigada C

PROVIDER: S-EPMC7310281 | biostudies-literature | 2020 Jun

REPOSITORIES: biostudies-literature

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Palliative care in its own discourse: a focused ethnography of professional messaging in palliative care.

Reigada Carla C Arantzamendi Maria M Centeno Carlos C

BMC palliative care 20200622 1

<h4>Background</h4>Despite 50 years of modern palliative care (PC), a misunderstanding of its purpose persists. The original message that PC is focused on total care, helping to live until the person dies, is being replaced and linked to feelings of fear, anxiety and death, instead of compassion, support or appropriate care. Society is still afraid to speak its name, and specialized units are identified as "places of death" as opposed to "places of life" meant to treat suffering. This issue is p ...[more]

PMID: 32571288

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Project description:BACKGROUND:After-school care programs have garnered interest in recent years as the hours of 3:00-6:00?p.m. are an opportune time for children to engage in healthy behaviours, specifically healthy eating and physical activity. Care providers are major influencers within the after-school care setting, impacting health promoting opportunities for children. However, little is known regarding the role care providers play in health promotion interventions in the after-school care setting, specifically those using comprehensive approaches. The purpose of this research was to explore care providers' role and experience promoting healthy eating and physical activity through the after-school care health promotion intervention School's Out … Let's Move (SOLMo). SOLMo was guided by the evidence-based comprehensive school health framework. SOLMo had two main goals: [1] to serve a healthy snack with vegetable or fruit, and milk or water as the drink; [2] to include 30?min of moderate to vigorous physical activity. The intervention included resources and coaching for care providers to promote healthy eating and physical activity for children and took place in four after-school sites over a six-month period. Three of four sites were located in a school. The primary researcher was engaged with the sites over 22-months. METHODS:This research was guided by the qualitative method focused ethnography. Semi-structured interviews with care providers (n?=?13) taking part in SOLMo were conducted. Participant observation was included as part of data generation to further understand care provider roles. Latent content analysis was utilized iteratively and concurrently throughout data generation. RESULTS:Overall, care providers were supportive of promoting health behaviours in the after-school setting. Through analysis, five themes and eight subthemes emerged related to care providers' role and experience promoting healthy eating and physical activity through SOLMo: 1) enhanced awareness; 2) improved programming; 3) strong relationships; 4) collaborative approach; and 5) role tension. CONCLUSIONS:As major influencers, care providers play a crucial role in promoting healthy lifestyle behaviours for children. This research provides valuable insight into this role and the implementation of comprehensive health promotion approaches in the after-school setting. Findings contribute to the implementation knowledge base and help inform the promotion of healthy lifestyle behaviours for children.

Project description:BackgroundPeople living in rural and remote locations are disadvantaged in accessing palliative care. This can be attributed to several factors including the role diversity and the low numbers of patients with specific conditions, as well as the difficulties rural health practitioners have in accessing opportunities for professional education. A program of multidisciplinary palliative care video conferences was presented to health practitioners across part of northern Australia in an effort to address this problem.MethodThe educational content of the video conferences was developed from participant responses to an educational needs assessment. Following cycles of four consecutive video conferences, 101 participants completed evaluative on-line surveys. The quantitative data were analysed using frequencies and analysis of variance tests with post-hoc analyses where appropriate, and an accessibility and remoteness index was used to classify their practice location.ResultsAll participants found the content useful regardless of their remoteness from the tertiary centre, their years of experience caring for palliative care patients or the number of patients cared for each year. However, change in confidence to provide palliative care as a result of attending the video conferences was significant across all disciplines, regardless of location. Doctors, medical students and allied health professionals indicated the greatest change in confidence.ConclusionsThe provision of professional education about palliative care issues via multidisciplinary video conferencing increased confidence among rural health practitioners, by meeting their identified need for topic and context specific education. This technology also enhanced the networking opportunities between practitioners, providing an avenue of ongoing professional support necessary for maintaining the health workforce in rural and remote areas. However, more attention should be directed to the diverse educational needs of allied health professionals.

Project description:ObjectiveThe problems and needs of advanced cancer patients and proxies normally increase as the disease progresses. Home-based advanced cancer patients and their proxies benefit from collaborations between primary care physicians and hospital-based palliative care specialists when confronted with complex problems in the last phase of life. Telemedicine might facilitate direct, patient-centered communication between patients and proxies, primary care physicians, and specialist palliative care teams (SPCTs). This study focuses on the impact of teleconsultation technologies on the relationships between home-based palliative care patients and hospital-based palliative care specialists.MethodsThis work consists of a qualitative study among patients, family members, and caregivers that utilizes long-term direct observations, semi-structured interviews, and open interviews following the observations.ResultsThe analysis of the empirical data resulted in three key concepts that describe the impact of teleconsultation on the patient-professional relationship in palliative homecare: transcending the institutional walls of home and hospital; transparency of teleconsultation technology; and technologized, intimate patient-professional relationships. Teleconsultation offers (1) condensed encounters between home-based palliative care patients and distant professionals, (2) a unique insight into the patients' daily lives for palliative care specialists, and (3) long-term interaction that results in trustful relationships and experiences of intimacy and relief.ConclusionsTeleconsultation fits the practice of home-based palliative care. Teleconsultation can, if well applied, facilitate computer-mediated but empathic patient-palliative care specialist relationships, which enable professional care attuned to the patient's context as well as patient involvement. This article proposes a teleconsultation implementation guide for optimal use of teleconsultation in daily palliative care practice.

Project description:ObjectivesTo better understand the experience of patients attending community-based primary healthcare practices (CBPHCPs) aimed at improving equity and access to primary care for underserved patients, which have been implemented locally in several countries, including Canada. There are currently little data on how, or to what extent, they mitigate patients' experience of social inequalities in care and improve their access to health. This study explored the impacts of the sociospatial characteristics of these practices on patients' care experience.Design and methodsQualitative, multisite, focused ethnographic study based on in-situ observations and interviews, incorporating inductive and deductive analysis, and using the concept of sense of place.SettingThree CBPHCPs located in deprived urban areas in two provinces of Canada.Participants28 structurally marginalised persons (17 women) attending the clinics, ranging in age from 18 to 79 years, and 16 managers, clinicians and practitioners working in these clinics.ResultsData underscored the importance of clinic proximity and accessibility in facilitating patients' navigation of the health system. Patients appreciated the clinics' positive sociospatial characteristics. Non-judgmental environments and informal spaces fostered patients' empowerment and social interaction among themselves and with peer navigators and healthcare professionals. The experience of supportive continuity of care had a positive impact on patients' sense of well-being and, for many, a positive ripple effect and long-term impact on their social integration.ConclusionThese results have important implications for policy given the current context, in which governments are challenged to support primary healthcare that addresses the social determinants of health to achieve greater equity. We conclude that scaling up contextually tailored care and deploying humanistic innovative organisational practices into mainstream care will help narrow the equity gap and reduce current prevalent social inequalities in the health system.

Project description:BACKGROUND:The interest for qualitative research methodology has expanded beyond theoretical academic research on medical education, gathering interest from all healthcare professionals. Qualitative research has potentials in exploring the social, emotional, psychological aspects of care and in broadening professionals' scientific competencies. Nonetheless, qualitative research has still not been embraced within formal and academic curricula for future professionals, preventing newer generations from appreciating the value of its epistemological and methodological aspects and from using it in the development and implementation of clinical research. The purpose of this study was to comprehend the attitudes of health professionals learning and conducting qualitative studies within a practical training program developed in their workplace. METHODS:The present work consisted of a focused ethnography, including 14 professionals during their one-year attendance training on qualitative research methodology. Strategies used for collecting data included participant observations, field notes, semi-structured interviews, and a focus group. All the data were analyzed consistently with ethnographic indications. RESULTS:Analyses allowed us to evidence the educational, motivational, group-related and organizational factors influencing the attitudes and skill acquisition of healthcare professionals learning and conducting qualitative research within a practical training program developed in their workplace. Prior educational background was perceived as a sort of barrier. Nonetheless, the training boosted a change in attitude both in terms of appreciation of the research approach and trainees' emotional involvement with research participants. Doing a qualitative study in a multidisciplinary team raised in-group dynamics that hindered bringing the studies to conclusion. Trainees repeatedly lamented the difficulty in managing time to devote to research-related activities and questioned the feasibility of adopting this methodology for conducting research in their workplace. CONCLUSIONS:Continual education training on the methodological aspects and practical implications of qualitative research may foster a renewed attitude towards one's professional education, while making inter-professional relationship issues emerge. Nonetheless, broadening the perspectives of professionals on their clinical practice by means of learning qualitative methodology may have an evident quality improvement return. Strategies for future qualitative research methodology hands-on training addressed to health professionals in continuing education are proposed.

Project description:BACKGROUND:Shared decision-making (SDM) can advance patient satisfaction, understanding, goal fulfilment, and patient-reported outcomes. We lack clarity on whether this physician-focused literature applies to community rehabilitation, and on the integration of SDM policies in healthcare settings. We aimed to understand patient and provider perceptions of shared decision-making (SDM) in community rehabilitation, particularly the barriers and facilitators to SDM. METHODS:We used a focused ethnography involving 14 community rehabilitation sites across Alberta, including rural, regional-urban and metropolitan-urban sites. We conducted semi-structured interviews that asked participants about their positive and negative communication experiences (n = 23 patients; n = 26 providers). RESULTS:We found SDM experiences fluctuated between extremes: Getting Patient Buy-In and Aligning Expectations. The former is provider-driven, prescriptive and less flexible; the latter is collaborative, inquisitive and empowering. In Aligning Expectations, patients and providers express humility and openness, communicate in the language of ask and listen, and view education as empowering. Patients and providers described barriers and facilitators to SDM in community rehabilitation. Facilitators included geography influencing context and connections; consistent, patient-specific messaging; patient lifestyle, capacity and perceived outlook; provider confidence, experience and perceived independence; provider training; and perceptions of more time (and control over time) for appointments. SDM barriers included lack of privacy; waitlists and financial barriers to access; provider approach; how choices are framed; and, patient's perceived assertiveness, lack of capacity, and level of deference. CONCLUSIONS:We have found both excellent experiences and areas for improvement for applying SDM in community rehabilitation. We proffer recommendations to advance high-quality SDM in community rehabilitation based on promoting facilitators and overcoming barriers. This research will support the spread, scale and evaluation of a new Model of Care in rehabilitation by the provincial health system, which aimed to promote patient-centred care.

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Palliative care in its own discourse: a focused ethnography of professional messaging in palliative care.

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Palliative care in its own discourse: a focused ethnography of professional messaging in palliative care.

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