Don’t Shoot the Messenger: Experiences of Delivering Prognostic Information in the Context of Advanced Cancer

The study of prognostic understanding is imperative as the trend toward individualized medicine continues. However, without guidelines for discussing prognosis, palliative care clinicians face challenges presenting prognostic information in a way that optimizes patient understanding, psychological adjustment, and decision-making. The present study draws on the experiences of experts in the field of palliative care in order to examine the communication of prognostic information. Fifteen oncology, psycho-oncology, and palliative care professionals with expertise in doctor–patient communication participated in semi-structured interviews that focused on identifying the breadth of factors underlying prognostic understanding, as well as methods to identify and quantify this understanding. Three independent raters utilized a thematic content analysis framework to identify core themes that reflected unique aspects of prognostic understanding. Interviews yielded 2 types of information. Participants described the multifaceted nature of prognostic understanding and identified 5 distinct elements of prognostic understanding: understanding of current state of disease, life expectancy, curability, decline trajectory, and available treatment options. Participants also offered “best practice” techniques, including methods for determining a patient’s preferences for and understanding of prognostic information, assessing patient fears and concerns, and communicating medical uncertainties. Results emphasize the need for clinicians to join with patients to ensure that prognostic information is well understood. These results highlight the salience of health information preferences and strategies to provide comprehensive prognostic information, compassionately and with respect for each individual patient.

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The challenge of functional neurological disorder – views of patients, doctors and medical students

The Journal of Mental Health Training Education and Practice ◽

10.1108/jmhtep-06-2020-0036 ◽

2021 ◽

Vol 16 (2) ◽

pp. 123-138

Author(s):

Gareth Hutchinson ◽

Stefanie Caroline Linden

Keyword(s):

Medical Students ◽

Therapeutic Relationship ◽

Neurological Disorder ◽

Treatment Options ◽

Patient Survey ◽

Structured Interviews ◽

Content Type ◽

Doctor Patient Communication ◽

Functional Neurological Disorders ◽

Functional Neurological Disorder

Purpose This study aims to explore views and attitudes of doctors, patients and medical students in regard to Functional Neurological Disorders (FND), a common presentation in neurological and psychiatric practice. Design/methodology/approach We conducted semi-structured interviews with 11 clinicians and obtained online questionnaires from 21 patients and 75 medical students. We applied thematic analysis. Findings The clinician and patient surveys highlighted the importance of the therapeutic relationship and need for transparent communication. However, patients criticised excessive reliance on online resources in doctor–patient communication. They also emphasised the relevance of triggering life events, which was not a prominent theme for clinicians. Medical students had only scant knowledge of the concept of functional neurological disorder. Practical implications A good therapeutic relationship is considered central for outcome of FND by both clinicians and patients. The survey of medical students has identified considerable gaps in undergraduate medical education in FND. The patient survey can inform recommendations for the explanation of aetiological models and treatment options in clinical practice. Originality/value This is the first study exploring the attitudes of clinicians, medical students and patients to FND. The study highlights potential areas of disagreement between these groups.

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Review of the Current State and Future Development in Standardising Artificial Lighting

Light & Engineering ◽

10.33383/2019-011 ◽

2019 ◽

pp. 4-44 ◽

Cited By ~ 1

Author(s):

Peter Thorns

Keyword(s):

Internet Of Things ◽

Future Development ◽

Best Practice ◽

The Internet ◽

Artificial Lighting ◽

Current State ◽

Internal Structures ◽

European Regulations ◽

The Internet Of Things

This paper discusses the organisations involved in the development of application standards, European regulations and best practice guides, their scope of work and internal structures. It considers their respective visions for the requirements for future standardisation work and considers in more detail those areas where these overlap, namely human centric or integrative lighting, connectivity and the Internet of Things, inclusivity and sustainability.

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Reluctance to Accept Palliative Care and Recommendations for Improvement: Findings From Semi-Structured Interviews With Patients and Caregivers

American Journal of Hospice and Palliative Medicine® ◽

10.1177/10499091211012605 ◽

2021 ◽

pp. 104990912110126

Author(s):

Valeria Cardenas ◽

Anna Rahman ◽

Yujun Zhu ◽

Susan Enguidanos

Keyword(s):

Palliative Care ◽

Controlled Trial ◽

Insurance Coverage ◽

Healthcare Providers ◽

Health Condition ◽

Insurance Companies ◽

Structured Interviews ◽

Care Services ◽

Home Based ◽

Palliative Care Services

Background: Despite some insurance plans now paying for home-based palliative care, recent reports have suggested that insurance coverage for palliative care may be insufficient in expanding patient access to home-based palliative care. Aim: To identify patients’ and caregivers’ perceived barriers to home-based palliative care and their recommendations for overcoming these barriers. Design: We conducted a qualitative study using semi-structured individual interviews. Our interview protocol elicited participants’ perspectives on home-based palliative care services; positive and negative aspects of the palliative program explanation; and suggestions for improving messaging around home-based palliative care. Setting/Participants: Twenty-five participants (patients, proxies, and their caregivers) who were eligible for a randomized controlled trial of home-based palliative care were interviewed by telephone. Results: Themes related to home-based palliative care referral barriers included reluctance to have home visits, enrollment timing, lack of palliative care knowledge, misconceptions about palliative care, and patients’ self-perceived health condition. Themes related to recommendations for overcoming these obstacles included ensuring that palliative care referrals come from healthcare providers or insurance companies and presenting palliative care services more clearly. Conclusion: Findings reinforce the need for additional palliative care education among patients with serious illness (and their caregivers) and the importance of delivering palliative care information and referrals from trusted sources.

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The role of research in improving responsiveness of palliative care to migrants and other underserved populations in the Netherlands: a qualitative interview study

BMC Palliative Care ◽

10.1186/s12904-020-00701-2 ◽

2021 ◽

Vol 20 (1) ◽

Author(s):

M. Torensma ◽

B. D. Onwuteaka-Philipsen ◽

X. de Voogd ◽

D. L. Willems ◽

J. L. Suurmond

Keyword(s):

Palliative Care ◽

Healthcare Professionals ◽

Underserved Populations ◽

Ethnic Disparities ◽

Migration Background ◽

Structured Interviews ◽

Migrant Populations ◽

Funding Agencies ◽

Qualitative Interview Study ◽

Palliative Patient

Abstract Background The aging of migrant populations across Europe challenges researchers in palliative care to produce knowledge that can be used to respond to the needs of the growing group of patients with a migration background and address ethnic disparities in palliative care. The aim of this study was to identify what factors influence researchers’ efforts to address responsiveness of palliative care to patients with a migration background and other underserved populations in their projects. Methods We conducted semi-structured interviews with 11 researchers involved in seven projects under the Dutch national program for palliative care innovation. Results Researchers’ efforts to address responsiveness of palliative care in their projects were influenced by individual factors, i.e. awareness of the need for responsiveness to patients with a migration background; experience with responsiveness; and, differences in perceptions on responsiveness in palliative care. Researchers’ efforts were furthermore influenced by institutional factors, i.e. the interaction with healthcare institutions and healthcare professionals as they rely on their ability to identify the palliative patient with a migration background, address the topic of palliative care, and enrol these patients in research; scientific standards that limit the flexibility needed for responsive research; and, the responsiveness requirements set by funding agencies. Conclusion Researchers play a key role in ensuring research addresses responsiveness to patients with a migration background. Such responsiveness may also benefit other underserved populations. However, at times researchers lack the knowledge and experience needed for responsive research. To address this we recommend training in responsiveness for researchers in the field of palliative care. We also recommend training for healthcare professionals involved in research projects to increase enrolment of patients with a migration background and other underrepresented populations. Lastly, we encourage researchers as well as research institutions and funding agencies to allow flexibility in research practices and set a standard for responsive research practice.

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Views about sensory modulation from people with schizophrenia and treating staff: A multisite qualitative study

British Journal of Occupational Therapy ◽

10.1177/0308022620988470 ◽

2021 ◽

pp. 030802262098847

Author(s):

Tawanda Machingura ◽

Chris Lloyd ◽

Karen Murphy ◽

Sarah Goulder ◽

David Shum ◽

...

Keyword(s):

Content Analysis ◽

Treatment Option ◽

Perceived Risk ◽

Quantitative Methods ◽

Qualitative Content Analysis ◽

Treatment Options ◽

Occupational Therapists ◽

Sensory Modulation ◽

Structured Interviews ◽

Effective Training

Introduction Current non-pharmacological treatment options for people with schizophrenia are limited. There is, however, emerging evidence that sensory modulation can be beneficial for this population. This study aimed to gain insight into sensory modulation from the user’s and the treating staff’s perspectives. Method A qualitative content analysis design was used. Transcripts from occupational therapists ( n=11) and patients with schizophrenia ( n=13) derived from in-depth semi-structured interviews were analysed for themes using content analysis. Results Five themes emerged from this study: Service user education on the sensory approach is the key; A variety of tools should be tried; Sensory modulation provides a valued treatment option; There are challenges of managing perceived risk at an organisational level; and There is a shortage of accessible and effective training. Conclusion People with schizophrenia and treating staff had congruent perceptions regarding the use of sensory modulation as a treatment option. The findings suggest that sensory modulation can be a valued addition to treatment options for people with schizophrenia. We suggest further research on sensory modulation intervention effectiveness using quantitative methods so these results can be further explored.

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An Exploratory Qualitative Study of Patient and Caregiver Perspectives of Ambulatory Kidney Palliative Care

American Journal of Hospice and Palliative Medicine® ◽

10.1177/1049909120986121 ◽

2021 ◽

pp. 104990912098612

Author(s):

Alycia A. Bristol ◽

Sobaata Chaudhry ◽

Dana Assis ◽

Rebecca Wright ◽

Derek Moriyama ◽

...

Keyword(s):

Palliative Care ◽

Kidney Disease ◽

Chronic Kidney Disease Stage ◽

Stage Iv ◽

The United States ◽

Qualitative Description ◽

Disease Stage ◽

Structured Interviews ◽

Care Clinic ◽

Clinical Model

Objectives: The ideal clinical model to deliver palliative care to patients with advanced kidney disease is currently unknown. Internationally, ambulatory kidney palliative care clinics have emerged with positive outcomes, yet there is limited data from the United States (US). In this exploratory study we report perceptions of a US-based ambulatory kidney palliative care clinic from the perspective of patient and caregiver attendees. The objective of this study was to inform further improvement of our clinical program. Methods: Semi-structured interviews were conducted to elicit the patient and caregiver experience. Eleven interviews (8 patients with chronic kidney disease stage IV or V and 3 caregivers) were analyzed using qualitative description design. Results: We identified 2 themes: “Communication addressing the emotional and physical aspects of disease” and “Filling gaps in care”; Subthemes include perceived value in symptom management, assistance with coping with disease, engagement in advance care planning, program satisfaction and patient activation. Significance of Results: Qualitative analysis showed that attendees of an ambulatory kidney palliative care clinic found the clinic enhanced the management of their kidney disease and provided services that filled current gaps in their care. Shared experiences highlight the significant challenges of life with kidney disease and the possible benefits of palliative care for this population. Further study to determine the optimal model of care for kidney palliative care is needed. Inclusion of the patient and caregiver perspective will be essential in this development.

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Albanian National Action Plan for Roma Inclusion 2016–2020: A Study on the Program Achievements at the Halfway Mark

SAGE Open ◽

10.1177/21582440211036107 ◽

2021 ◽

Vol 11 (3) ◽

pp. 215824402110361

Author(s):

Gentian Qejvanaj

Keyword(s):

Action Plan ◽

Communist Regime ◽

Background Information ◽

Structured Interviews ◽

National Action Plan ◽

Current State ◽

The Us ◽

Implementation Period ◽

Education And Employment

Roma segregation in Albania has been causing growing concern since the fall of the communist regime. In this study, we analyze the effectiveness of the Albanian national action plan for Roma inclusion 2016–2020, in 2018, halfway in its implementation period. We gathered data on education and employment from the pre-implementation period (2015) and compared it with the latest available data in 2018. Interviews with local experts and surveys by the Balkan Barometer will provide background information to assess the current state of Roma integration in Albania. Moreover, descriptive statistics from national and international institutions and structured interviews will draw an independent narrative of Roma affairs. In our conclusion, we suggest moving beyond the “us and them” approach with programs run on inertia; our findings highlight that although encouraging achievements have been reached under the 2016–2020 action plan, real inclusion is still far, as statistical achievements do not say much about the quality of the education or job training provided under the 2016–2020 action plan.

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Making your geriatric and palliative programs a strength: TQIP guideline implementation and the VRC perspective

Trauma Surgery & Acute Care Open ◽

10.1136/tsaco-2021-000677 ◽

2021 ◽

Vol 6 (1) ◽

pp. e000677

Author(s):

Vanessa P Ho ◽

Sasha D Adams ◽

Kathleen M O'Connell ◽

Christine S Cocanour ◽

Saman Arbabi ◽

...

Keyword(s):

Palliative Care ◽

Best Practice ◽

Guideline Implementation ◽

Geriatric Trauma ◽

Trauma Patients ◽

Level Of Evidence ◽

Best Practice Guidelines ◽

American College Of Surgeons ◽

Specialized Care ◽

The Usa

BackgroundOlder patients compose approximately 30% of trauma patients treated in the USA but make up nearly 50% of deaths from trauma. To help standardize and elevate care of these patients, the American College of Surgeons (ACS) Trauma Quality Improvement Program’s best practice guidelines for geriatric trauma management was published in 2013 and that for palliative care was published in 2017. Here, we discuss how palliative care and geriatrics quality metrics can be tracked and used for performance improvement and leveraged as a strength for trauma verification.MethodsWe discuss the viewpoint of the ACS Verification, Review, and Consultation and three case studies, with practical tips and takeaways, of how these measures have been implemented at different institutions.ResultsWe describe the use of (1) targeted educational initiatives, (2) development of a consultation tool based on institutional resources, and (3) application of a nurse-led frailty screen.DiscussionSpecialized care and attention to these vulnerable populations is recommended, but the implementation of these programs can take many shapes.Level of evidence V

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Evaluating the integration of palliative care in national health systems: an indicator rating process with EAPC task force members to measure advanced palliative care development

BMC Palliative Care ◽

10.1186/s12904-021-00728-z ◽

2021 ◽

Vol 20 (1) ◽

Author(s):

Natalia Arias-Casais ◽

Eduardo Garralda ◽

Miguel Antonio Sánchez-Cárdenas ◽

John Y. Rhee ◽

Carlos Centeno

Keyword(s):

Primary Care ◽

Palliative Care ◽

Long Term Care ◽

Task Force ◽

National Level ◽

Structured Interviews ◽

Term Care ◽

Care Facilities ◽

Rating Process

Abstract Background Palliative care (PC) development cannot only be assessed from a specialized provision perspective. Recently, PC integration into other health systems has been identified as a component of specialized development. Yet, there is a lack of indicators to assess PC integration for pediatrics, long-term care facilities, primary care, volunteering and cardiology. Aim To identify and design indicators capable of exploring national-level integration of PC into the areas mentioned above. Methods A process composed of a desk literature review, consultation and semi-structured interviews with EAPC task force members and a rating process was performed to create a list of indicators for the assessment of PC integration into pediatrics, long-term care facilities, primary care, cardiology, and volunteering. The new indicators were mapped onto the four domains of the WHO Public Health Strategy. Results The literature review identified experts with whom 11 semi-structured interviews were conducted. A total of 34 new indicators were identified for national-level monitoring of palliative care integration. Ten were for pediatrics, five for primary care, six for long-term care facilities, seven for volunteering, and six for cardiology. All indicators mapped onto the WHO domains of policy and education while only pediatrics had an indicator that mapped onto the domain of services. No indicators mapped onto the domain of use of medicines. Conclusion Meaningful contributions are being made in Europe towards the integration of PC into the explored fields. These efforts should be assessed in future regional mapping studies using indicators to deliver a more complete picture of PC development.

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Epilepsy in Mitochondrial Diseases—Current State of Knowledge on Aetiology and Treatment

Children ◽

10.3390/children8070532 ◽

2021 ◽

Vol 8 (7) ◽

pp. 532

Author(s):

Dorota Wesół-Kucharska ◽

Dariusz Rokicki ◽

Aleksandra Jezela-Stanek

Keyword(s):

Oxidative Phosphorylation ◽

Mitochondrial Dysfunction ◽

Mitochondrial Disease ◽

Clinical Picture ◽

Poor Prognosis ◽

Treatment Options ◽

Mitochondrial Diseases ◽

Energy Deficit ◽

Atp Production ◽

Current State

Mitochondrial diseases are a heterogeneous group of diseases resulting from energy deficit and reduced adenosine triphosphate (ATP) production due to impaired oxidative phosphorylation. The manifestation of mitochondrial disease is usually multi-organ. Epilepsy is one of the most common manifestations of diseases resulting from mitochondrial dysfunction, especially in children. The onset of epilepsy is associated with poor prognosis, while its treatment is very challenging, which further adversely affects the course of these disorders. Fortunately, our knowledge of mitochondrial diseases is still growing, which gives hope for patients to improve their condition in the future. The paper presents the pathophysiology, clinical picture and treatment options for epilepsy in patients with mitochondrial disease.

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