scholarly journals Lessons from the COVID-19 pandemic for improving outpatient neuropalliative care: A qualitative study of patient and caregiver perspectives

2021 ◽  
pp. 026921632110173
Author(s):  
Zachary A Macchi ◽  
Roman Ayele ◽  
Megan Dini ◽  
Jensine Lamira ◽  
Maya Katz ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Care Delivery ◽  
Healthcare Delivery ◽  
Psychosocial Needs ◽  
Structured Interviews ◽  
Supportive Services ◽  
Care Needs ◽  
Survey Responses ◽  
The Impact

Background: COVID-19 has impacted persons with serious illness, including those with chronic, neurodegenerative conditions. While there are several reports on COVID-19’s impact on inpatient palliative care, literature is limited about the impact on outpatient care which may be more relevant for these patients. Aim: To generate a person-centered description of the impact of COVID-19 from the perspectives of patients living with neurodegenerative disease and caregivers to improve outpatient palliative care delivery. Design: This qualitative study used rapid analysis via matrix design to identify emergent themes related to participant perspectives on the challenges of COVID-19. Data sources included semi-structured interviews, open-ended survey responses, medical record documentation and participant-researcher communications. Setting/Participants: Data was collected from 108 patients with Parkinson’s disease, Alzheimer’s disease or related disorders and 90 caregivers enrolled in a multicenter, clinical trial of community-based, outpatient palliative care between March 20, 2020 and August 8, 2020 (NCT03076671). Results: Four main themes emerged: (1) disruptions to delivery of healthcare and other supportive services; (2) increased symptomatic and psychosocial needs; (3) increased caregiver burden; (4) limitations of telecommunications when compared to in-person contact. We observed that these themes interacted and intersected. Conclusions: Patients and caregivers have unmet care needs because of the pandemic, exacerbated by social isolation. While telemedicine has helped improve access to healthcare, patients and caregivers perceive clear limitations compared to in-person services. Changes in society and healthcare delivery in response to COVID-19 highlight ongoing and novel gaps that must be addressed to optimize future outpatient palliative care for neurologic illness.

scholarly journals Hospital patients’ perspectives on what is essential to enable optimal palliative care: A qualitative study

2020 ◽  
Vol 34 (10) ◽  
pp. 1402-1415 ◽  
Author(s):  
Claudia Virdun ◽  
Tim Luckett ◽  
Karl Lorenz ◽  
Patricia M Davidson ◽  
Jane Phillips
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Family Involvement ◽  
Inpatient Care ◽  
Sense Of Self ◽  
The Body ◽  
Structured Interviews ◽  
Care Needs ◽  
Number Of Patients ◽  
Palliative Care Needs

Background: The majority of expected deaths in high income countries occur in hospital where optimal palliative care cannot be assured. In addition, a large number of patients with palliative care needs receive inpatient care in their last year of life. International research has identified domains of inpatient care that patients and carers perceive to be important, but concrete examples of how these might be operationalised are scarce, and few studies conducted in the southern hemisphere. Aim: To seek the perspectives of Australian patients living with palliative care needs about their recent hospitalisation experiences to determine the relevance of domains noted internationally to be important for optimal inpatient palliative care and how these can be operationalised. Design: An exploratory qualitative study using semi-structured interviews. Setting/participants: Participants were recruited through five hospitals in New South Wales, Australia. Results: Twenty-one participants took part. Results confirmed and added depth of understanding to domains previously identified as important for optimal hospital palliative care, including: Effective communication and shared decision making; Expert care; Adequate environment for care; Family involvement in care provision; Financial affairs; Maintenance of sense of self/identity; Minimising burden; Respectful and compassionate care; Trust and confidence in clinicians and Maintenance of patient safety. Two additional domains were noted to be important: Nutritional needs; and Access to medical and nursing specialists. Conclusions: Taking a person-centred focus has provided a deeper understanding of how to strengthen inpatient palliative care practices. Future work is needed to translate the body of evidence on patient priorities into policy reforms and practice points.

Palliative care in the emergency department: A qualitative study exploring barriers, facilitators, desired clinician qualities, and future directions

2021 ◽  
pp. 1-6
Author(s):  
Alexa Gips ◽  
Bethany-Rose Daubman ◽  
Laura A. Petrillo ◽  
Jason Bowman ◽  
Kei Ouchi ◽  
...  
Keyword(s):  
Emergency Department ◽  
Palliative Care ◽  
Qualitative Study ◽  
Barriers And Facilitators ◽  
Future Research ◽  
Structured Interviews ◽  
Two Phase ◽  
Financial Model ◽  
The Future ◽  
The Impact

Abstract Objective To describe the perceived qualities of successful palliative care (PC) providers in the emergency department (ED), barriers and facilitators to ED–PC, and clinicians’ perspectives on the future of ED–PC. Method This qualitative study using semi-structured interviews was conducted in June–August 2020. Interviews were analyzed via a two-phase Rapid Analysis. The study's primary outcomes (innovations in ED–PC during COVID) are published elsewhere. In this secondary analysis, we examine interviewee responses to broader questions about ED–PC currently and in the future. Results PC providers perceived as successful in their work in the ED were described as autonomous, competent, flexible, fast, and fluent in ED language and culture. Barriers to ED–PC integration included the ED environment, lack of access to PC providers at all times, the ED perception of PC, and the lack of a supporting financial model. Facilitators to ED–PC integration included proactive identification of patients who would benefit from PC, ED-focused PC education and tools, PC presence in the ED, and data supporting ED–PC. Increased primary PC education for ED staff, increased automation, and innovative ED–PC models were seen as areas for future growth. Significance of results Our findings provide useful information for PC programs considering expanding their ED presence, particularly as this is the first study to our knowledge that examines traits of successful PC providers in the ED environment. Our findings also suggest that, despite growth in the arena of ED–PC, barriers and facilitators remain similar to those identified previously. Future research is needed to evaluate the impact that ED–PC initiatives may have on patient and system outcomes, to identify a financial model to maintain ED–PC integration, and to examine whether perceptions of successful providers align with objective measures of the same.

Co-created Mobile Apps for Palliative Care using Community Partnered Participatory Research: Development and Usability Study (Preprint)

2021 ◽  
Author(s):  
Jafar Al-Mondhiry ◽  
Sarah D’Ambruoso ◽  
Christopher Pietras ◽  
Thomas Strouse ◽  
Dikla Benzeevi ◽  
...  
Keyword(s):  
Palliative Care ◽  
User Interface ◽  
Participatory Research ◽  
Care Delivery ◽  
Mobile Apps ◽  
Low Cost ◽  
Mobile App ◽  
Structured Interviews ◽  
Care Needs ◽  
Patient Reported

BACKGROUND Open design formats for mobile applications help clinicians and stakeholders bring their needs to direct, co-creative solutions. Palliative care for patients with advanced cancers requires intensive monitoring and support, and remains an area in high need for innovation. OBJECTIVE To use community partnered participatory research (CPPR) to co-design a mobile application to meet the palliative care priorities of clinicians and patients with advanced cancer. METHODS In-person and virtual workshops were held with patient and community stakeholders, researchers, and clinicians from palliative care and oncology. Question prompts, written feedback, semi-structured interviews and facilitated group discussion identified core palliative care needs. Using Chorus, a no-code app building platform, a mobile app was co-designed with stakeholders. A pilot test with a cohort of 11 patients was conducted, with semi-structured interviews of clinician and patient users for feedback. RESULTS Key themes identified from focus groups included patient advocacy and encouragement, access to vetted information, patient/clinician communication, and symptom management. The final prototype, “My Wellness App,” contained: 1) a weekly wellness journal to track patient-reported symptoms, goals, and medication use; 2) information on self-management of symptoms; 3) lists of community resources; and 4) patient and caregiver testimonial videos. Initial pilot testing identified value in app-based communication for clinicians, patients, and caregivers, with needs for improving user interface, feedback and presentation of symptom reports, gamification, and integration of a coordinator to support patient app engagement. CONCLUSIONS Development of a mobile app using CPPR is a low-cost, low-tech, and feasible intervention for palliative care delivery. Iterative re-design and user interface expertise may improve implementation.

scholarly journals Patients’ and clinicians’ perspectives on the primary care consultations for acute respiratory infections during the first wave of the COVID-19 pandemic: an eight-country qualitative study in Europe

BJGP Open ◽  
2022 ◽  
pp. BJGPO.2021.0172
Author(s):  
Marta Wanat ◽  
Melanie Eugenie Hoste ◽  
Nina Helene Gobat ◽  
Marilena Anastasaki ◽  
Femke Böhmer ◽  
...  
Keyword(s):  
Primary Care ◽  
Qualitative Study ◽  
Respiratory Infections ◽  
Care Delivery ◽  
European Countries ◽  
Structured Interviews ◽  
Delivery Of Care ◽  
Primary Care Delivery ◽  
The Impact ◽  
Remote Consultations

BackgroundThe impact of the COVID-19 pandemic on patients’ and clinicians’ perceptions of healthcare-seeking behaviour and delivery of care is unclear. The pandemic accelerated the use of remote care and understanding its benefits and drawbacks may inform its implementation during this and future healthcare emergencies.AimTo explore patients’ and primary care professionals’ (PCPs) experiences of primary care delivery in the first wave of the pandemic.Design & settingQualitative study using semi-structured interviews in primary care in eight European countriesResultsWe conducted 146 interviews with 80 PCPs and 66 patients consulting for respiratory tract infection (RTI) symptoms, in eight European countries (England, Ireland, Belgium, the Netherlands, Greece, Poland, Sweden and Germany). Data was collected between April and July 2020 and analysed using thematic analysis. We found that patients accepted telemedicine when PCPs spent time to understand and address their concerns, but a minority preferred in-person consultations. PCPs felt that remote consultations created emotional distance between themselves and patients, and they reported having to manage diverse COVID-19-related medical and social concerns.ConclusionRemote consultations for RTI symptoms may be acceptable long-term if both groups are happy to use this format but it is important that PCPs take time to address patients’ concerns and provide safety-netting advice.

scholarly journals Compounded trauma: A qualitative study of the challenges for refugees living with advanced cancer

2021 ◽  
pp. 026921632110002
Author(s):  
Ping Guo ◽  
Sawsan Alajarmeh ◽  
Ghadeer Alarja ◽  
Waleed Alrjoub ◽  
Ayman Al-Essa ◽  
...  
Keyword(s):  
Social Support ◽  
Qualitative Study ◽  
Advanced Cancer ◽  
Psychosocial Support ◽  
Large Population ◽  
Community Support ◽  
Support Network ◽  
Psychosocial Needs ◽  
Physical And Mental Health ◽  
The Impact

Background: Although palliative care is now an essential health service under Universal Health Coverage, ensuring access and appropriate care for refugees is a specific challenge for this large population. Aim: To identify the needs and experiences of adult refugees in Jordan with advanced cancer and informal caregivers. Design: A qualitative study using semi-structured interviews. Setting/participants: Participants were purposively sampled at two Jordanian hospitals to achieve heterogeneity by age, gender, country of origin, and primary diagnosis. Results: Twenty-nine refugees (22 patients, 7 caregivers) participated, and four themes were generated: (1) Psychological distress and sustaining social support. Refugees often experienced unmet psychosocial needs. However, psychosocial support was reported either absent or limited. (2) Knowledge and uncertainty. Lack of information and poor communication between healthcare providers and patients caused significant distress due to uncertainty. (3) Family anxiety and support roles. Being away from the home country cut patients and caregivers off from their wider social support network, which added increased anxiety and responsibilities to caregivers. (4) Compounded trauma and poverty. Many refugees have experienced trauma related to war that may affect their physical and mental health. They faced serious financial crises caused by the rising cost of medicines and treatment. Conclusions: This study reveals the impact of fractured families and networks on social support in advanced cancer, and the compounding trauma of the disease for refugees. Detailed person-centred assessment and emphasis on psychosocial support is essential, and home-based care should not presume community support for patients to remain at home.

scholarly journals Lockdowns, lives and livelihoods: the impact of COVID-19 and public health responses to conflict affected populations - a remote qualitative study in Baidoa and Mogadishu, Somalia

2021 ◽  
Vol 15 (1) ◽  
Author(s):  
Dorien H. Braam ◽  
Sharath Srinivasan ◽  
Luke Church ◽  
Zakaria Sheikh ◽  
Freya L. Jephcott ◽  
...  
Keyword(s):  
Public Health ◽  
Qualitative Study ◽  
Narrative Analysis ◽  
Grey Literature ◽  
Age Groups ◽  
Research Approach ◽  
Structured Interviews ◽  
Or Education ◽  
Public Health Response ◽  
The Impact

Abstract Background Authorities in Somalia responded with drastic measures after the first confirmed COVID-19 case in mid-March 2020, closing borders, schools, limiting travel and prohibiting most group functions. However, the impact of the pandemic in Somalia thereafter remained unclear. This study employs a novel remote qualitative research method in a conflict-affected setting to look at how some of the most at-risk internally displaced and host populations were impacted by COVID-19, what determined their responses, and how this affected their health and socio-economic vulnerability. Methods We conducted a remote qualitative study, using Katikati, a 1-to-1 conversation management and analysis platform using short message service (SMS) developed by Lark Systems with Africa’s Voices Foundation (AVF), for semi-structured interviews over three months with participants in Mogadishu and Baidoa. We recruited a gender balanced cohort across age groups, and used an analytical framework on the social determinants of health for a narrative analysis on major themes discussed, triangulating data with existing peer-reviewed and grey literature. Results The remote research approach demonstrated efficacy in sustaining trusted and meaningful conversations for gathering qualitative data from hard-to-reach conflict-affected communities. The major themes discussed by the 35 participants included health, livelihoods and education. Two participants contracted the disease, while others reported family or community members affected by COVID-19. Almost all participants faced a loss of income and/or education, primarily as a result of the strict public health measures. Some of those who were heavily affected economically but did not directly experienced disease, denied the pandemic. Religion played an important role in participants’ beliefs in protection against and salvation from the disease. As lockdowns were lifted in August 2020, many believed the pandemic to be over. Conclusions While the official COVID-19 burden has remained relatively low in Somalia, the impact to people’s daily lives, income and livelihoods due to public health responses, has been significant. Participants describe those ‘secondary’ outcomes as the main impact of the pandemic, serving as a stark reminder of the need to broaden the public health response beyond disease prevention to include social and economic interventions to decrease people’s vulnerability to future shocks.

scholarly journals Primary care teams’ experiences of delivering mental health care during the COVID-19 pandemic: a qualitative study

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Rachelle Ashcroft ◽  
Catherine Donnelly ◽  
Maya Dancey ◽  
Sandeep Gill ◽  
Simon Lam ◽  
...  
Keyword(s):  
Mental Health ◽  
Primary Care ◽  
Health Care ◽  
Qualitative Study ◽  
Mental Health Care ◽  
Focus Groups ◽  
Care Delivery ◽  
Virtual Care ◽  
Primary Care Teams ◽  
The Impact

Abstract Background Integrated primary care teams are ideally positioned to support the mental health care needs arising during the COVID-19 pandemic. Understanding how COVID-19 has affected mental health care delivery within primary care settings will be critical to inform future policy and practice decisions during the later phases of the pandemic and beyond. The objective of our study was to describe the impact of the COVID-19 pandemic on primary care teams’ delivery of mental health care. Methods A qualitative study using focus groups conducted with primary care teams in Ontario, Canada. Focus group data was analysed using thematic analysis. Results We conducted 11 focus groups with 10 primary care teams and a total of 48 participants. With respect to the impact of the COVID-19 pandemic on mental health care in primary care teams, we identified three key themes: i) the high demand for mental health care, ii) the rapid transformation to virtual care, and iii) the impact on providers. Conclusions From the outset of the COVID-19 pandemic, primary care quickly responded to the rising mental health care demands of their patients. Despite the numerous challenges they faced with the rapid transition to virtual care, primary care teams have persevered. It is essential that policy and decision-makers take note of the toll that these demands have placed on providers. There is an immediate need to enhance primary care’s capacity for mental health care for the duration of the pandemic and beyond.

scholarly journals The impact of the environment on patient experiences of hospital admissions in palliative care

2015 ◽  
Vol 8 (4) ◽  
pp. 485-492 ◽  
Author(s):  
Jackie Robinson ◽  
Merryn Gott ◽  
Clare Gardiner ◽  
Christine Ingleton
Keyword(s):  
Palliative Care ◽  
Health Professionals ◽  
Hospital Admissions ◽  
Hospital Setting ◽  
Prognostic Indicators ◽  
Care Needs ◽  
Acute Hospitals ◽  
Almost All ◽  
The Impact ◽  
Palliative Care Needs

ObjectiveTo explore the impact of environment on experiences of hospitalisation from the perspective of patient's with palliative care needs.MethodsA qualitative study design using longitudinal semistructured, face-to-face interviews were used to elicit the views of patients with palliative care needs admitted to hospital in 1 large urban acute hospital in New Zealand. The sample comprised of 14 patients admitted to hospital between July 2013 and March 2014 who met one of the Gold Standard Framework Prognostic Indicators for palliative care need.ResultsAlmost all participants described a range of factors associated with the environment which impacted negatively on their experiences of hospitalisation. This included challenges with the physical surroundings, the impact on social relationships with other patients, families and health professionals and the influence of the cultural milieu of the hospital setting.ConclusionsEmulating the ‘ideal’ environment for palliative care such as that provided in a hospice setting is an unrealistic goal for acute hospitals. Paying attention to the things that can be changed, such as enabling family to stay and improving the flexibility of the physical environment while improving the social interplay between patients and health professionals, may be a more realistic approach than replicating the hospice environment in order to reduce the burden of hospitalisations for patients with palliative care needs.

Big data and artificial intelligence for health system sustainability: The case of Veneto Region

2021 ◽  
pp. 31-52
Author(s):  
Grazia Dicuonzo ◽  
Francesca Donofrio ◽  
Antonio Fusco ◽  
Vittorio Dell’Atti
Keyword(s):  
Artificial Intelligence ◽  
Big Data ◽  
Healthcare System ◽  
Care Delivery ◽  
Research Question ◽  
Health Agency ◽  
Time Frame ◽  
Structured Interviews ◽  
Case Study Methodology ◽  
The Impact

This paper investigates the digitalization challenges facing the Italian healthcare system. The aim of the paper is to support healthcare organizations as they take advantage of the potential of big data and artificial intelligence (AI) to promote sustainable healthcare systems. Both the development of innovative processes in the management of health care activities and the introduction of healthcare forecasting systems are valuable resources for clinical and care activities and enable a more efficient use of inputs in essential-level care delivery. By examining an innovative project developed by the Regional Social Health Agency (ARSS) of Veneto, this study analyses the impact of big data and AI on the sustainability of a healthcare system. In order to answer the research question, we used a case study methodology. We conducted semi-structured interviews with key members of the organizational group involved in the case. The results show that the implementation of AI algorithms based on big data in healthcare both improves the interpretation and processing of data, and reduces the time frame necessary for clinical processes, having a positive effect on sustainability.

Opportunities and challenges for telemedicine oncology: Perspectives from the frontline (Preprint)

2021 ◽  
Author(s):  
Kea Turner ◽  
Margarita Bobonis Babilonia ◽  
Cristina Naso ◽  
Oliver Nguyen ◽  
Brian D. Gonzalez ◽  
...  
Keyword(s):  
Patient Outcomes ◽  
Cancer Care ◽  
Healthcare Workers ◽  
Healthcare Delivery ◽  
Implementation Strategies ◽  
Structured Interviews ◽  
Biometric Data ◽  
Quality Costs ◽  
Workflow Integration ◽  
The Impact

BACKGROUND Rapid implementation of telemedicine for cancer care during COVID-19 required innovative and adaptive solutions among healthcare workers. OBJECTIVE The objective of this qualitative study was to explore healthcare workers’ experiences with telemedicine implementation during COVID-19. METHODS We conducted semi-structured interviews with 40 oncology healthcare workers who implemented telemedicine during COVID-19. The interviews were recorded, transcribed verbatim, and analyzed for themes using Dedoose software (Version 4.12). RESULTS Approximately half of participants were physicians (55%) and one quarter of participants were APPs (25%). Other participants included social workers (n=3), psychologists (n=2), dieticians (n=2), and a pharmacist. Five key themes were identified: 1) establishing and maintaining patient-provider relationships, 2) coordinating care with other providers and informal caregivers, 3) adapting in-person assessments for telemedicine, 4) developing workflows and allocating resources, and 5) future recommendations. Participants described innovative strategies for implementing telemedicine, such as coordinating inter-disciplinary visits with multiple providers. Healthcare workers discussed key challenges, such as workflow integration, lack of physical exam and biometric data, and overcoming the digital divide. Participants recommended policy advocacy to support telemedicine (e.g., medical licensure policies) and monitoring how telemedicine affects patient outcomes and healthcare delivery. CONCLUSIONS To support the growth of telemedicine, implementation strategies are needed to ensure providers and patients have the tools necessary to effectively engage in telemedicine. At the same time, cancer care organizations will need to engage in advocacy to ensure policies are supportive of oncology telemedicine and develop systems to monitor the impact of telemedicine on patient outcomes, healthcare quality, costs, and equity. CLINICALTRIAL N/A

Sign in / Sign up

Export Citation Format

Share Document