scholarly journals Gaining an accurate reflection of the reality of palliative care through the use of free-text feedback in questionnaires: the AFTER study

2016 ◽  
Vol 9 (1) ◽  
pp. e17-e17 ◽  
Author(s):  
Anna Victoria Bowyer ◽  
Ilora Finlay ◽  
Jessica Baillie ◽  
Anthony Byrne ◽  
Jacqui McCarthy ◽  
...  
Keyword(s):  
Palliative Care ◽  
Data Analysis ◽  
Visual Cues ◽  
Ad Hoc ◽  
Service Evaluation ◽  
Free Text ◽  
Evaluation Questionnaire ◽  
Care Services ◽  
Analysis Strategies ◽  
Palliative Care Services

BackgroundIn healthcare, many service evaluation questionnaires use free-text boxes without formal mechanisms for analysis. Patients and carers spend time documenting concerns that are often ignored or managed locally in an ad hoc manner. Currently, palliative care experiences of patients and carers in Wales are measured using a service evaluation questionnaire, comprising both closed and open-ended questions. Previous research, exploring free-text responses from this questionnaire, suggests that questionnaire refinement should accommodate service users’ expressed priorities and concerns, and highlights the need to incorporate free-text data analysis strategies during study design.MethodsResults from a previous analysis of 596 free-text responses provided the basis for an expert consensus day, where the current service evaluation questionnaire was refined. The refined version was tested during cognitive interviews with patients (n=10) and carers (n=7) receiving palliative care from 1 of 2 UK hospices. Data were analysed thematically.ResultsInterviews highlighted minor areas for change within the questionnaire and provided broader insight into patients’ experiences of palliative care services. Patients and carers place an emphasis on simplifying language, decreasing the numeric response range and reducing written instructions; relying instead on visual cues, including formatting and layout. Findings highlighted the importance patients attached to providing meaningful free-text contributions.ConclusionsQuestionnaire refinement should use the patient perspective to effectively facilitate respondent understanding, pertinence and usability. The importance of employing data analysis strategies during questionnaire design may reduce research waste, thus enabling a better interrogation of service provision.

scholarly journals The need for early referral to palliative care especially for Black, Asian and minority ethnic groups in a COVID-19 pandemic: Findings from a service evaluation

2020 ◽  
Vol 34 (9) ◽  
pp. 1241-1248 ◽  
Author(s):  
Claude Chidiac ◽  
David Feuer ◽  
Mary Flatley ◽  
Anna Rodgerson ◽  
Kate Grayson ◽  
...  
Keyword(s):  
Palliative Care ◽  
Care Service ◽  
Palliative Care Service ◽  
District General Hospital ◽  
Service Evaluation ◽  
Early Referral ◽  
Care Services ◽  
Minority Ethnic Groups ◽  
Palliative Care Services ◽  
Minority Ethnic

Background: Palliative care services face challenges in adapting and responding to the COVID-19 pandemic. Understanding how palliative care needs and outcomes have changed during the pandemic compared to before the pandemic is crucial to inform service planning and research initiatives. Aim: To evaluate the impact of COVID-19 on symptoms, clinical characteristics, and outcomes for patients referred to a hospital-based palliative care service in a district general hospital in London, UK. Design: A retrospective service evaluation. Data were extracted from the electronic patient records. Setting/participants: The first 60 inpatients with confirmed COVID-19 infection, referred to the hospital palliative care service between 1 March 2020 and 23 April 2020, and another 60 inpatients, referred to the hospital palliative care service between 11 March 2019 and 23 April 2019, were included from a district general hospital in East London, UK. Results: Patients with COVID-19 have lower comorbidity scores, poorer performance status, and a shorter time from referral to death compared to patients without COVID-19. Breathlessness, drowsiness, agitation, and fever are the most prevalent symptoms during COVID-19 compared to pain and drowsiness pre-COVID-19. Time from admission to referral to palliative care is longer for Black, Asian and minority ethnic patients, especially during COVID-19. Conclusion: Early referral to palliative care is essential in COVID-19, especially for Black, Asian and minority ethnic groups. There is urgent need to research why Black, Asian and minority ethnic patients are referred late; how palliative care services have changed; and possible solutions to setting up responsive, flexible, and integrated services.

scholarly journals ‘Necessity is the mother of invention’: Specialist palliative care service innovation and practice change in response to COVID-19. Results from a multinational survey (CovPall)

2021 ◽  
pp. 026921632110006
Author(s):  
Lesley Dunleavy ◽  
Nancy Preston ◽  
Sabrina Bajwah ◽  
Andy Bradshaw ◽  
Rachel Cripps ◽  
...  
Keyword(s):  
Palliative Care ◽  
Good Practice ◽  
System Response ◽  
Free Text ◽  
Care Providers ◽  
Specialist Palliative Care ◽  
Care Services ◽  
Palliative Care Teams ◽  
Palliative Care Services ◽  
Palliative Care Units

Background: Specialist palliative care services have a key role in a whole system response to COVID-19, a disease caused by the SARS-CoV-2 virus. There is a need to understand service response to share good practice and prepare for future care. Aim: To map and understand specialist palliative care services innovations and practice changes in response to COVID-19. Design: Online survey of specialist palliative care providers (CovPall), disseminated via key stakeholders. Data collected on service characteristics, innovations and changes in response to COVID-19. Statistical analysis included frequencies, proportions and means, and free-text comments were analysed using a qualitative framework approach. Setting/participants: Inpatient palliative care units, home nursing services, hospital and home palliative care teams from any country. Results: Four hundred and fifty-eight respondents: 277 UK, 85 Europe (except UK), 95 World (except UK and Europe), 1 missing country. 54.8% provided care across 2+ settings; 47.4% hospital palliative care teams, 57% in-patient palliative care units and 57% home palliative care teams. The crisis context meant services implemented rapid changes. Changes involved streamlining, extending and increasing outreach of services, using technology to facilitate communication, and implementing staff wellbeing innovations. Barriers included; fear and anxiety, duplication of effort, information overload and funding. Enablers included; collaborative teamwork, staff flexibility, a pre-existing IT infrastructure and strong leadership. Conclusions: Specialist palliative care services have been flexible, highly adaptive and have adopted low-cost solutions, also called ‘frugal innovations’, in response to COVID-19. In addition to financial support, greater collaboration is essential to minimise duplication of effort and optimise resource use. ISRCTN16561225 https://doi.org/10.1186/ISRCTN16561225

scholarly journals Specialist palliative care services response to ethnic minority groups with COVID-19: equal but inequitable—an observational study

2021 ◽  
pp. bmjspcare-2021-003083
Author(s):  
Sabrina Bajwah ◽  
Jonathan Koffman ◽  
Jamilla Hussain ◽  
Andy Bradshaw ◽  
Mevhibe B Hocaoglu ◽  
...  
Keyword(s):  
Palliative Care ◽  
Ethnic Minority ◽  
Online Survey ◽  
Minority Groups ◽  
Categorical Variables ◽  
Free Text ◽  
Ethnic Minority Groups ◽  
Cross Sectional ◽  
Care Services ◽  
Palliative Care Services

ObjectivesTo develop insights into response of palliative care services caring for people from ethnic minority groups during COVID-19.MethodsCross-sectional online survey of UK palliative care services response to COVID-19. Quantitative data were summarised descriptively and χ2 tests used to explore relationships between categorical variables. Free text comments were analysed using reflexive thematic analysis.Results277 UK services responded. 168 included hospice teams (76% of all UK hospice teams). Services supporting those from ethnic minority groups were more likely to include hospital (p<0.001) and less likely to include hospice (p<0.001) or home care teams (p=0.008). 34% (93/277) of services had cared for patients with COVID-19 or families from ethnic minority groups. 66% (61/93) of these services stated no difference in how they supported or reached these groups during the pandemic.Three themes demonstrated impact of policy introduced during the pandemic, including: disproportionate adverse impact of restricted visiting, compounded communication challenges and unmet religious and faith needs. One theme demonstrated mistrust of services by ethnic minority groups, and the final theme demonstrated a focus on equal and individualised care.ConclusionsPolicies introduced during the COVID-19 pandemic may have adversely impacted those from ethnic minority groups making these at-risk populations even more vulnerable. The palliative care response may have been equal but inequitable. During the para-COVID-19 period, systemic steps, including equality impact assessments, are urgently needed.

scholarly journals Understanding the impact of the Covid-19 pandemic on delivery of rehabilitation in specialist palliative care services: An analysis of the CovPall-Rehab survey data

2021 ◽  
pp. 026921632110633
Author(s):  
Joanne Bayly ◽  
Andy Bradshaw ◽  
Lucy Fettes ◽  
Muhammed Omarjee ◽  
Helena Talbot-Rice ◽  
...  
Keyword(s):  
Palliative Care ◽  
Online Survey ◽  
Rehabilitation Services ◽  
Free Text ◽  
Specialist Palliative Care ◽  
Advanced Illness ◽  
Cross Sectional ◽  
Care Services ◽  
Palliative Care Services ◽  
The Impact

Background: Palliative rehabilitation involves multi-professional processes and interventions aimed at optimising patients’ symptom self-management, independence and social participation throughout advanced illness. Rehabilitation services were highly disrupted during the Covid-19 pandemic. Aim: To understand rehabilitation provision in palliative care services during the Covid-19 pandemic, identifying and reflecting on adaptative and innovative practice to inform ongoing provision. Design: Cross-sectional national online survey. Setting/participants: Rehabilitation leads for specialist palliative care services across hospice, hospital, or community settings, conducted from 30/07/20 to 21/09/2020. Findings: 61 completed responses (England, n = 55; Scotland, n = 4; Wales, n = 1; and Northern Ireland, n = 1) most frequently from services based in hospices (56/61, 92%) providing adult rehabilitation. Most services (55/61, 90%) reported rehabilitation provision becoming remote during Covid-19 and half reported reduced caseloads. Rehabilitation teams frequently had staff members on sick-leave with suspected/confirmed Covid-19 (27/61, 44%), redeployed to other services/organisations (25/61, 41%) or furloughed (15/61, 26%). Free text responses were constructed into four themes: (i) fluctuating shared spaces; (ii) remote and digitised rehabilitation offer; (iii) capacity to provide and participate in rehabilitation; (iv) Covid-19 as a springboard for positive change. These represent how rehabilitation services contracted, reconfigured, and were redirected to more remote modes of delivery, and how this affected the capacity of clinicians and patients to participate in rehabilitation. Conclusion: This study demonstrates how changes in provision of rehabilitation during the pandemic could act as a springboard for positive changes. Hybrid models of rehabilitation have the potential to expand the equity of access and reach of rehabilitation within specialist palliative care.

scholarly journals Prohibit, protect, or adapt? The changing role of volunteers in palliative and hospice care services during the COVID-19 pandemic. A multinational survey (CovPall).

2021 ◽  
Author(s):  
Catherine Walshe ◽  
Ian Garner ◽  
Lesley Dunleavy ◽  
Nancy Preston ◽  
Andy Bradshaw ◽  
...  
Keyword(s):  
Palliative Care ◽  
Online Survey ◽  
Hospice Care ◽  
Care Quality ◽  
Free Text ◽  
Role Changes ◽  
Care Services ◽  
Key Stakeholders ◽  
Palliative Care Services ◽  
Virtual Support

Background: Volunteers are common within palliative care services, and provide support that enhances care quality. The support they provided, and any role changes, during the COVID-19 pandemic are unknown. Aims: To understand volunteer deployment and activities within palliative care services, and to identify what may affect any changes in volunteer service provision, during the COVID-19 pandemic. Methods: Multi-national online survey disseminated via key stakeholders to specialist palliative care services, completed by lead clinicians. Data collected on volunteer roles, deployment, and changes in volunteer engagement. Analysis included descriptive statistics, a multivariable logistic regression, and analysis of free-text comments using a content analysis approach. Results: 458 respondents: 277 UK, 85 rest of Europe, and 95 rest of the world. 68.5% indicated volunteer use pre-COVID-19. These were across a number of roles (from 458): direct patient/family facing support (58.7%), indirect support (e.g. driving) (52.0%), back office (48.5%) and fundraising (45.6%). 11% had volunteers with COVID-19. Of those responding to a question on change in volunteer deployment (328 of 458) most (256/328, 78%) indicated less or much less use of volunteers. Less use of volunteers was associated with being an in-patient hospice, (OR=0.15, 95%CI = 0.07-0.3 p<.001). This reduction in volunteers was felt to protect potentially vulnerable volunteers and with policy changes preventing volunteers from supporting services. However, adapting was also seen where new roles were created, or existing roles pivoted to provide virtual support. Discussion and conclusion: Volunteers were mostly prevented from supporting many forms of palliative care, particularly in in-patient hospices, which may have quality and safety implications given their previously central roles. Volunteer re-deployment plans are needed that take a more considered approach, using volunteers more flexibly to enhance care while ensuring safe working practices. Consideration needs to be given to widening the volunteer base away from those who may be considered to be most vulnerable to COVID-19

scholarly journals Understanding the impact of the Covid-19 pandemic on delivery of rehabilitation in specialist palliative care services: An analysis of the CovPall-Rehab survey data.

2021 ◽  
Author(s):  
Jo Bayly ◽  
Andy Bradshaw ◽  
Lucy Fettes ◽  
Muhammed Omarjee ◽  
Helena Talbot-Rice ◽  
...  
Keyword(s):  
Palliative Care ◽  
Online Survey ◽  
Rehabilitation Services ◽  
Free Text ◽  
Specialist Palliative Care ◽  
Advanced Illness ◽  
Cross Sectional ◽  
Care Services ◽  
Palliative Care Services ◽  
The Impact

Abstract Background: Palliative rehabilitation involves multi-professional processes and interventions aimed at optimising patients symptom self-management, independence, and social participation throughout advanced illness. Rehabilitation services were highly disrupted during the Covid-19 pandemic. Aim: To understand rehabilitation provision in palliative care services during the Covid-19 pandemic, identifying and reflecting on adaptative and innovative practice to inform ongoing provision. Design: Cross-sectional national online survey. Setting/participants: Rehabilitation leads for specialist palliative care services across hospice, hospital, or community settings, conducted from 30/07/20 to 21/09/2020. Findings: 61 completed responses (England, n=55; Scotland, n=4; Wales, n=1; and Northern Ireland, n=1) most frequently from services based in hospices (56/61, 92%) providing adult rehabilitation. Most services (55/61, 90%) reported rehabilitation provision becoming remote during Covid-19 and half reported reduced caseloads. Rehabilitation teams frequently had staff members on sick-leave with suspected/confirmed Covid-19 (27/61, 44%), redeployed to other services/organisations (25/61, 41%) or furloughed (15/61, 26%). Free text responses were constructed into four themes: (i) fluctuating shared spaces; (ii) remote and digitised rehabilitation offer; (iii) capacity to provide and participate in rehabilitation; (iv) Covid-19 as a springboard for positive change. These represent how rehabilitation services contracted, reconfigured, and were redirected to more remote modes of delivery, and how this affected the capacity of clinicians and patients to participate in rehabilitation. Conclusion: This study demonstrates how changes in provision of rehabilitation during the pandemic could act as a springboard for positive changes. Hybrid models of rehabilitation have the potential to expand the equity of access and reach of rehabilitation within specialist palliative care.

scholarly journals Prohibit, Protect, Or Adapt? The Changing Role of Volunteers in Palliative and Hospice Care Services during the COVID-19 Pandemic. A Multinational Survey (Covpall)

2021 ◽  
Author(s):  
Catherine Walshe ◽  
Ian Garner ◽  
Lesley Dunleavy ◽  
Nancy Preston ◽  
Andy Bradshaw ◽  
...  
Keyword(s):  
Palliative Care ◽  
Online Survey ◽  
Hospice Care ◽  
Care Quality ◽  
Free Text ◽  
Role Changes ◽  
Care Services ◽  
Key Stakeholders ◽  
Palliative Care Services ◽  
Virtual Support

Background: Volunteers are common within palliative care services, and provide support that enhances care quality. The support they provided, and any role changes, during the COVID-19 pandemic are unknown. The aim of this study is to understand volunteer deployment and activities within palliative care services, and to identify what may affect any changes in volunteer service provision, during the COVID-19 pandemic. Methods: Multi-national online survey disseminated via key stakeholders to specialist palliative care services, completed by lead clinicians. Data collected on volunteer roles, deployment, and changes in volunteer engagement. Analysis included descriptive statistics, a multivariable logistic regression, and analysis of free-text comments using a content analysis approach. Results: 458 respondents: 277 UK, 85 rest of Europe, and 95 rest of the world. 68.5% indicated volunteer use pre-COVID-19 across a number of roles (from 458): direct patient facing support (58.7%), indirect support (52.0%), back office (48.5%) and fundraising (45.6%). 11% had volunteers with COVID-19. Of those responding to a question on change in volunteer deployment (328 of 458) most (256/328, 78%) indicated less or much less use of volunteers. Less use of volunteers was associated with being an in-patient hospice, (OR=0.15, 95% CI = 0.07-0.3 p<.001). This reduction in volunteers was felt to protect potentially vulnerable volunteers, with policy changes preventing volunteer support. However, adapting was also seen where new roles were created, or existing roles pivoted to provide virtual support. Conclusion: Volunteers were mostly prevented from supporting many forms of palliative care which may have quality and safety implications given their previously central roles. Volunteer re-deployment plans are needed that take a more considered approach, using volunteers more flexibly to enhance care while ensuring safe working practices. Consideration needs to be given to widening the volunteer base away from those who may be considered to be most vulnerable to COVID-19.

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