scholarly journals What are the opportunities for cancer care and related research in primary care? A qualitative study of the views of patients, carers, and practice staff

2019 ◽  
Vol 69 (suppl 1) ◽  
pp. bjgp19X703505
Author(s):  
Joseph Clark ◽  
Elvis Amoakwa ◽  
John Blenkinsopp ◽  
Florence Reedy ◽  
Miriam Johnson
Keyword(s):  
Primary Care ◽  
Palliative Care ◽  
Qualitative Study ◽  
Focus Groups ◽  
Cancer Care ◽  
Information Needs ◽  
Controlled Trial ◽  
Unmet Need ◽  
Care Staff ◽  
Trial Participation

BackgroundResearch to identify the role of primary care in cancer care is important. However, trials in primary care are difficult.AimTo understand how patients, families, and primary care clinicians view their role in cancer care and identify opportunities for cancer primary care research.MethodQualitative study embedded within a feasibility cluster randomised controlled trial of a primary care based needs assessment intervention. The Supportive Cancer Needs Survey (SCNS) was the main outcome. In-depth interviews with patients/carers and focus groups with primary care staff explored views on cancer care and trial participation. Data were recorded, transcribed verbatim, and analysed thematically by three independent researchers.ResultsFifteen cancer patients and three carers were interviewed and four focus groups (n = 11) were conducted. Three themes were generated satisfaction with current care; key time-points for improved cancer care; and information and research. Satisfaction with current care among patients was high in spite of 72% reporting at least one moderate-high unmet need at baseline. Most patients undergoing cancer treatment were unsure when to access primary care. Patients and carers highly valued proactive contact from their practice following diagnosis though this was uncommon. Post-oncology discharge was a key time-point for information needs and support for patients. Patients were reluctant to consider palliative care in spite of palliative care needs. Some felt therapeutic benefit from completing study measures.ConclusionPatients are satisfied with cancer primary care despite unmet needs. Palliative care is poorly understood by many who may benefit. Research participation may benefit some patients.

scholarly journals Patient, Caregiver, and Physician Barriers to Home-Based Palliative Care: Findings From a Terminated Study

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 167-167
Author(s):  
Susan Enguidanos ◽  
Stephanie Wladkowski
Keyword(s):  
Primary Care ◽  
Palliative Care ◽  
Qualitative Study ◽  
Primary Care Physicians ◽  
Controlled Trial ◽  
Healthcare Providers ◽  
Insurance Company ◽  
Care Services ◽  
Home Based ◽  
Palliative Care Services

Abstract Despite two decades of palliative care services, there remains numerous barriers to patient and caregiver use of palliative care. For many years, policymakers believed lack of funding for palliative care was the primary obstacle to accessing palliative care services. In 2017, we undertook a randomized controlled trial to test the effectiveness of a home-based palliative care (HBPC) program within accountable care organizations and in partnership with an insurance company that covered the cost of HBPC. After 20 months, we had recruited just 28 patients. This symposium will: (1) describe outcomes from various approaches undertaken to engage primary care physicians and recruit patients and their caregivers into this trial; (2) present barriers to HBPC referral identified from a qualitative study of primary care physicians; (3) present findings from a qualitative study of patient- and caregiver-identified barriers to HBPC; (4) describe physician and patient barriers to research participation; and (5) discuss implications of these findings for researchers and healthcare providers. Information presented in this symposium will inform researchers and policy makers about challenges and facilitators to recruiting patients, caregivers, and physicians to participate in research studies as well as inform healthcare practitioners of potential obstacles to increasing patient access to HBPC.

Perceived Facilitators and Barriers to Implementation of a Decision Support Tool for Adolescent Depression and Suicidality Screening: A Qualitative Study (Preprint)

2020 ◽  
Author(s):  
Ana Radovic ◽  
Nathan Anderson ◽  
Megan Hamm ◽  
Brandie George-Milford ◽  
Carrie Fascetti ◽  
...  
Keyword(s):  
Mental Health ◽  
Primary Care ◽  
Qualitative Study ◽  
Focus Groups ◽  
Decision Support Tool ◽  
Depression Screening ◽  
Self Disclosure ◽  
Support Tool ◽  
Adolescent Parent ◽  
Barriers To Implementation

BACKGROUND Screening Wizard (SW) is a technology-based decision support tool aimed at guiding primary care providers (PCPs) to respond to depression and suicidality screens in adolescents. Separate screens assess adolescents’ and parents’ reports on mental health symptoms, treatment preferences, and potential treatment barriers. A detailed summary is provided to PCPs, also identifying adolescent-parent discrepancies. The goal of SW is to enhance decision making to increase utilization of evidence-based treatments. OBJECTIVE We describe a multi-stakeholder qualitative study with adolescents, parents, and providers to understand potential barriers to implementation of SW. METHODS We interviewed 11 parents and 11 adolescents, and conducted 2 focus groups with 17 healthcare providers (PCPs, nurses, therapists, staff) across 2 pediatric practices. Participants described previous experiences with screening for depression and were shown a mock-up of SW and asked for feedback. Interviews and focus groups were transcribed verbatim, and codebooks inductively developed based on content. Transcripts were double-coded, and disagreements adjudicated to full agreement. Completed coding was used to produce thematic analyses of interviews and focus groups. RESULTS We identified five main themes across the interviews and focus groups: (1) parents, adolescents, and pediatric PCPs agree that depression screening should occur in pediatric primary care; (2) there is concern that accurate self-disclosure does not always occur during depression screening; (3) Screening Wizard is viewed as a tool that could facilitate depression screening, and which might encourage more honesty in screening responses; (4) parents, adolescents and providers do not want Screening Wizard to replace mental health discussions with providers; and (5) providers want to maintain autonomy in treatment decisions. CONCLUSIONS We identified that providers, parents, and adolescents all have concerns with current screening practices, mainly regarding inaccurate self-disclosure. They recognized value in SW as a computerized tool that may elicit more honest responses and identify adolescent-parent discrepancies. Surprisingly, providers did not want the SW report to include treatment recommendations, and all groups did not want the SW report to replace conversations with the PCP about depression. While SW was originally developed as a treatment decision algorithm, this qualitative study has led us to remove this component, and instead focus on aspects identified as most useful by all groups. We hope that this initial qualitative work will improve future implementation of SW.

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 Experience of primary care for people with HIV: a mixed-method analysis

BJGP Open ◽  
2019 ◽  
Vol 3 (4) ◽  
pp. bjgpopen19X101665
Author(s):  
Tanvi Rai ◽  
Jane Bruton ◽  
Meaghan Kall ◽  
Richard Ma ◽  
Erica Pufall ◽  
...  
Keyword(s):  
Primary Care ◽  
Qualitative Study ◽  
Mixed Method ◽  
Care Staff ◽  
People Living With Hiv ◽  
Hiv Status ◽  
Framework Analysis ◽  
Complex Needs ◽  
Hiv Status Disclosure ◽  
Method Analysis

BackgroundAdvances in treatment have transformed HIV into a long-term condition (LTC), presenting fresh challenges for health services, HIV specialists, and GPs.AimTo explore the experience of people living with HIV (PLHIV) regarding consulting their GPs.Design & settingA mixed-method analysis using data from two sources: a nationally-representative survey of PLHIV and a qualitative study with London-based PLHIV.MethodUnivariate logistic regression was used for quantitative data and framework analysis for qualitative data.ResultsThe survey had 4422 participants; the qualitative study included 52 participants. In both studies, registration with a GP and HIV status disclosure were high. Similar to general population trends, recent GP use was associated with poor self-rated health status, comorbidities, older age, and lower socioeconomic status. Two-thirds reported a good experience with GPs; a lower proportion felt comfortable asking HIV-related questions. Actual or perceived HIV stigma were consistently associated with poor satisfaction. In the interviews, participants with additional LTCs valued sensitive and consistent support from GPs. Some anticipated, and sometimes experienced, problems relating to HIV status, as well as GPs’ limited experience and time to manage their complex needs. Sometimes they took their own initiative to facilitate coordination and communication. For PLHIV, a ‘good’ GP offered continuity and took time to know and accept them without judgment.ConclusionThe authors suggest clarification of roles and provision of relevant support to build the confidence of PLHIV in GPs and primary care staff to care for them. As the PLHIV population ages, there is a strong need to develop trusting patient–GP relationships and HIV-friendly GP practices.

scholarly journals Defining the information needs of lung cancer screening participants: a qualitative study

2019 ◽  
Vol 6 (1) ◽  
pp. e000448 ◽  
Author(s):  
Mamta Ruparel ◽  
Samantha Quaife ◽  
David Baldwin ◽  
Jo Waller ◽  
Samuel Janes
Keyword(s):  
Lung Cancer ◽  
Cancer Screening ◽  
Qualitative Study ◽  
Focus Groups ◽  
Information Needs ◽  
False Negative ◽  
Lung Cancer Screening ◽  
Informed Decision ◽  
Curative Treatment ◽  
Information Materials

IntroductionLung cancer screening (LCS) by low-dose CT has been shown to improve mortality, but individuals must consider the potential benefits and harms before making an informed decision about taking part. Shared decision-making is required for LCS in USA, though screening-eligible individuals’ specific views of these harms, and their preferences for accessing this information, are not well described.MethodsIn this qualitative study, we aimed to explore knowledge and perceptions around lung cancer and LCS with a focus on harms. We carried out seven focus groups with screening-eligible individuals, which were divided into current versus former smokers and lower versus higher educational backgrounds; and 16 interviews with health professionals including general practitioners, respiratory physicians, lung cancer nurse specialists and public health consultants. Interviews and focus groups were audio-recorded and transcribed. Data were coded inductively and analysed using the framework method.ResultsFatalistic views about lung cancer as an incurable disease dominated, particularly among current smokers, and participants were often unaware of curative treatment options. Despite this, beliefs that screening is sensible and worthwhile were expressed. Generally participants felt they had the ‘right’ to an informed decision, though some cautioned against information overload. The potential harms of LCS were poorly understood, particularly overdiagnosis and radiation exposure, but participants were unlikely to be deterred by them. Strong concerns about false-negative results were expressed, while false-positive results and indeterminate nodules were also reported as concerning.ConclusionsThese findings demonstrate the need for LCS information materials to highlight information on the benefits of early detection and options for curative treatment, while accurately presenting the possible harms. Information needs are likely to vary between individuals and we recommend simple information materials to be made available to all individuals considering participating in LCS, with signposting to more detailed information for those who require it.

scholarly journals Understanding data and information needs for palliative cancer care to inform digital health intervention development in Nigeria, Uganda and Zimbabwe: protocol for a multicountry qualitative study

BMJ Open ◽  
2019 ◽  
Vol 9 (10) ◽  
pp. e032166 ◽  
Author(s):  
Kehinde Okunade ◽  
Kennedy Bashan Nkhoma ◽  
Omolola Salako ◽  
David Akeju ◽  
Bassey Ebenso ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Cancer Care ◽  
Information Needs ◽  
Research Council ◽  
Digital Health ◽  
Health Interventions ◽  
Sub Saharan Africa ◽  
Institutional Review Boards ◽  
National Council ◽  
Framework Analysis

IntroductionPalliative care is a clinically and cost‐effective component of cancer services in sub-Saharan Africa (SSA). Despite the significant need for palliative cancer care in SSA, coverage remains inadequate. The exploration of digital health approaches could support increases in the quality and reach of palliative cancer care services in SSA. However, there is currently a lack of any theoretical underpinning or data to understand stakeholder drivers for digital health components in this context. This project addresses this gap through engaging with key stakeholders to determine data and information needs that could be supported through digital health interventions.Methods and analysisThis is a multicountry, cross-sectional, qualitative study conducted in Nigeria, Uganda and Zimbabwe. In-depth interviews will be conducted in patients with advanced cancer (n=20), caregivers (n=15), health professionals (n=20) and policy-makers (n=10) in each of the three participating countries. Data from a total of 195 interviews will transcribed verbatim and translated into English before being imported into NVivo software for deductive framework analysis. The analysis will seek to understand the acceptability and define mechanisms of patient-level data capture and usage via digital technologies.Ethics and disseminationEthics approvals have been obtained from the Institutional Review Boards of University of Leeds (Ref: MREC 18–032), Research Council of Zimbabwe (Ref: 03507), Medical Research Council of Zimbabwe (Ref: MRCZ/A/2421), Uganda Cancer Institute (Ref: 19–2018), Uganda National Council of Science and Technology (Ref: HS325ES) and College of Medicine University of Lagos (Ref: HREC/15/04/2015). The project seeks to determine optimal mechanisms for the design and development of subsequent digital health interventions to support development, access to, and delivery of palliative cancer care in SSA. Dissemination of these findings will occur through newsletters and press releases, conference presentations, peer-reviewed journals and social media.Trial registration numberISRCTN15727711

scholarly journals Dementia case-finding in hospitals: a qualitative study exploring the views of healthcare professionals in English primary care and secondary care

BMJ Open ◽  
2018 ◽  
Vol 8 (3) ◽  
pp. e020521 ◽  
Author(s):  
Anne-Marie Burn ◽  
Jane Fleming ◽  
Carol Brayne ◽  
Chris Fox ◽  
Frances Bunn
Keyword(s):  
Primary Care ◽  
Qualitative Study ◽  
Secondary Care ◽  
Healthcare Professionals ◽  
Hospital Staff ◽  
Case Finding ◽  
Care Staff ◽  
Dementia Case ◽  
Primary Care Staff ◽  
Views Of Healthcare Professionals

ObjectivesIn 2012–2013, the English National Health Service mandated hospitals to conduct systematic case-finding of people with dementia among older people with unplanned admissions. The method was not defined. The aim of this study was to understand current approaches to dementia case-finding in acute hospitals in England and explore the views of healthcare professionals on perceived benefits and challenges.DesignQualitative study involving interviews, focus groups and thematic content analysis.SettingPrimary care and secondary care across six counties in the East of England.ParticipantsHospital staff involved in dementia case-finding and primary care staff in the catchment areas of those hospitals.ResultsWe recruited 23 hospital staff and 36 primary care staff, including 30 general practitioners (GPs). Analysis resulted in three themes: (1) lack of consistent approaches in case-finding processes, (2) barriers between primary care and secondary care which impact on case-finding outcomes and (3) perceptions of rationale, aims and impacts of case-finding. The study shows that there were variations in how well hospitals recorded and reported outcomes to GPs. Barriers between primary care and secondary care, including GPs’ lack of access to hospital investigations and lack of clarity about roles and responsibilities, impacted case-finding outcomes. Staff in secondary care were more positive about the initiative than primary care staff, and there were conflicting priorities for primary care and secondary care regarding case-finding.ConclusionsThe study suggests a more evidence-based approach was needed to justify approaches to dementia case-finding. Information communicated to primary care from hospitals needs to be comprehensive, appropriate and consistent before GPs can effectively plan further investigation, treatment or care. Follow-up in primary care further requires access to options for postdiagnostic support. There is a need to evaluate the outcomes for patients and the economic impact on health and care services across settings.

PP28 ‘They are not silly people – they know the difference’: clinician focus group views on a pilot randomised controlled trial of prehospital continuous positive airway pressure (CPAP)

2019 ◽  
Vol 36 (10) ◽  
pp. e12.2-e13
Author(s):  
Joshua Miller ◽  
Samuel Keating ◽  
Alex Scott ◽  
Gordon Fuller ◽  
Steve Goodacre
Keyword(s):  
Continuous Positive Airway Pressure ◽  
Randomised Controlled Trial ◽  
Focus Groups ◽  
Airway Pressure ◽  
Standard Care ◽  
Positive Airway Pressure ◽  
Controlled Trial ◽  
Trial Participation ◽  
Pilot Randomised Controlled Trial ◽  
Randomised Controlled

BackgroundContinuous positive airway pressure (CPAP) is not in widespread use in UK ambulance services, but could benefit patients with acute respiratory failure (ARF). As a new treatment in this context, clinician acceptability is an important factor in the feasibility of conducting definitive research in the prehospital arena.MethodsAs part of a pilot randomised controlled trial (the ACUTE study), nine trial-trained paramedics took part in three semi-structured focus groups. 204 trained staff had been given the opportunity to take part. The sample included six staff who had recruited to the trial, one who had not, and two who had withdrawn from it. Audio-recordings were transcribed and analysed thematically.ResultsParticipants described facilitators to trial participation including: clear eligibility criteria and patient documentation, access to demonstration equipment, training away from the work environment, and repeated patient recruitment. Barriers to taking part included: the lack of protected time for training, inadequate workplace facilities for the electronic learning package used, adverse responses by receiving hospital staff, and infrequent patient exposure. Both paramedics who withdrew cited the inconvenience of carrying packs each shift. Some participants described anxiety and distress when opening packs to find a standard-care mask, and reported patients having similar reactions.ConclusionsFuture researchers could promote improved workplace computing facilities and increased provision of face-to-face training days, which were praised by participants in these focus groups, but limited to a single event distant from some staff. Greater stakeholder engagement by researchers could reduce the difficulties at hospital handover reported by some ambulance staff. Where blinding is not possible, the perceptions of clinicians and patients should be considered carefully, as this study shows both may have adverse emotional responses to being treated with standard care, particularly when prospective consent discussions describe the trial intervention as potentially beneficial.

Evaluation of coordination of cancer care between designated cancer hospitals and primary care providers: Results from a nationwide survey in Japan.

2018 ◽  
Vol 36 (7_suppl) ◽  
pp. 84-84
Author(s):  
Taro Tomizuka ◽  
Tomone Watanabe ◽  
Satoru Kamitani ◽  
Takahiro Higashi
Keyword(s):  
Primary Care ◽  
Palliative Care ◽  
Care Coordination ◽  
Cancer Care ◽  
Critical Path ◽  
Primary Care Providers ◽  
Care Providers ◽  
Follow Up Care ◽  
Cancer Specialist

84 Background: To improve coordination of cancer care between cancer specialist hospitals and primary care providers (PCPs), the Japanese government accredited cancer specialist hospitals, so called “designated cancer care hospitals (DCCHs)” and introduced “Cancer care coordination instruction fee” which PCPs can receive if they share a cancer critical path (Japanese version of Survivorship Care Plans) of each cancer patient with DCCHs. We sought to assess the current status of coordination of cancer care in Japan and communication between DCCHs and PCPs from PCPs’ point of view. Methods: A cross-sectional mail survey was administered to randomly selected clinic-based PCPs (4,000 clinics) from a nation-wide database of medical institutions authorized by Ministry of Health, Labour and Welfare Japan to treat patients with health insurance (87,869 clinics). The survey evaluated how much PCPs provided cancer follow-up care and how well DCCHs coordinated care and communicated with PCPs in cancer survivorship. Results: 1,873 PCPs returned the questionnaire (response rate: 46.8%). 1,223 (65.3%) answered to provide cancer follow-up care in outpatient setting. Most of the PCPs which provided cancer follow-up care evaluated the care coordination and support by DCCHs were satisfactory (946, 77.4%) but the degree of good evaluation varied by region (highest: 91.3%, lowest: 45.8%). In regression analysis, provision of palliative care by PCPs (OR 1.52 95%CI 1.05-2.17) and use of cancer critical path (OR 2.10 95%CI 1.63-2.71) were significantly correlated with better evaluation of communication and care coordination. Conclusions: DCCHs communicated well with PCPs and PCPs were satisfied with the communication and care coordination by DCCHs. Provision of palliative care by PCPs and use of cancer critical path are likely to lead good care coordination in cancer care.

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