Implementing person-centred outcome measures in palliative care: An exploratory qualitative study using Normalisation Process Theory to understand processes and context

© The Author(s) 2020. Background: Despite evidence demonstrating the utility of using Person-Centred Outcome Measures within palliative care settings, implementing them into routine practice is challenging. Most research has described barriers to, without explaining the causal mechanisms underpinning, implementation. Implementation theories explain how, why, and in which contexts specific relationships between barriers/enablers might improve implementation effectiveness but have rarely been used in palliative care outcomes research. Aim: To use Normalisation Process Theory to understand and explain the causal mechanisms that underpin successful implementation of Person-Centred Outcome Measures within palliative care. Design: Exploratory qualitative study. Data collected through semi-structured interviews and analysed using a Framework approach. Setting/participants: 63 healthcare professionals, across 11 specialist palliative care services, were purposefully sampled by role, experience, seniority, and settings (inpatient, outpatient/day therapy, home-based/community). Results: Seven main themes were developed, representing the causal mechanisms and relationships underpinning successful implementation of outcome measures into routine practice. Themes were: Subjectivity of measures; Frequency and version of Integrated Palliative care Outcome Scale; Training, education, and peer support; Building and sustaining community engagement; Electronic system readiness; The art of communication; Reinforcing use through demonstrating value. Conclusions: Relationships influencing implementation resided at individual and organisational levels. Addressing these factors is key to driving the implementation of outcome measures into routine practice so that those using palliative care services can benefit from the systematic identification, management, and measurement of their symptoms and concerns. We provide key questions that are essential for those implementing and using outcome measures to consider in order to facilitate the integration of outcome measures into routine palliative care practice

Perceptions of the Impact of Positive Action in EU and non-EU Countries

yesAbstract: Around the world, inequalities exist around boundaries of race, social class, gender, disability, religious beliefs and sexual orientation, often resulting from past and current discriminatory practices. Governments have taken certain measures, including enacting policies such as positive action, to remedy such discrimination. This paper provides a comparative analysis of perceptions of the impact of positive action in seven EU and three non-EU countries. The study adopted participatory methods including consensus workshops, interviews and policy analysis to obtain data from designers of positive action. Findings are discussed, conclusions drawn and wide-ranging recommendations are made at the EC, individual countries and organisational levels

Provision of palliative and end-of-life care in UK care homes during the COVID-19 pandemic: A mixed methods observational study with implications for policy

© 2023 Bradshaw, Ostler, Goodman, Batkovskyte, Ellis-Smith, Tunnard, Bone, Barclay, Vernon, Higginson, Evans and Sleeman. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). https://creativecommons.org/licenses/by/4.0/Introduction: Little consideration has been given to how the provision of palliative and end-of-life care in care homes was affected by COVID-19. The aims of this study were to: (i) investigate the response of UK care homes in meeting the rapidly increasing need for palliative and end-of-life care during the COVID-19 pandemic and (ii) propose policy recommendations for strengthening the provision of palliative and end-of-life care within care homes. Materials and methods: A mixed methods observational study was conducted, which incorporated (i) an online cross-sectional survey of UK care homes and (ii) qualitative interviews with care home practitioners. Participants for the survey were recruited between April and September 2021. Survey participants indicating availability to participate in an interview were recruited using a purposive sampling approach between June and October 2021. Data were integrated through analytic triangulation in which we sought areas of convergence, divergence, and complementarity. Results: There were 107 responses to the survey and 27 interviews. We found that (i) relationship-centered care is crucial to high-quality palliative and end-of-life care within care homes, but this was disrupted during the pandemic. (ii) Care homes' ability to maintain high-quality relationship-centered care required key “pillars” being in place: integration with external healthcare systems, digital inclusion, and a supported workforce. Inequities within the care home sector meant that in some services these pillars were compromised, and relationship-centered care suffered. (iii) The provision of relationship-centered care was undermined by care home staff feeling that their efforts and expertise in delivering palliative and end-of-life care often went unrecognized/undervalued. Conclusion: Relationship-centered care is a key component of high-quality palliative and end-of-life care in care homes, but this was disrupted during the COVID-19 pandemic. We identify key policy priorities to equip care homes with the resources, capacity, and expertise needed to deliver palliative and end-of-life care: (i) integration within health and social care systems, (ii) digital inclusivity, (iii) workforce development, (iv) support for care home managers, and (v) addressing (dis)parities of esteem. These policy recommendations inform, extend, and align with policies and initiatives within the UK and internationally.Peer reviewe

Positive Action Measures Across Different Equality Grounds, Organisations and Sectors in European and Non-european Countries

yesAbstract: This article is based on a large-scale European Commission project on international perspectives on positive action measures. The paper presents an analysis of the perceptions of positive action held by respondents from all the countries participating in an international survey, focussing specifically upon differences across equality grounds, sector and organisation type. This paper will also provide examples of positive action being applied in European and non-European countries that participated in the study. The study adopted extensive literate and online survey to obtain data from designers of positive action. Findings are discussed, conclusions drawn and wide-ranging recommendations are made at the European Commission, individual countries and organisational levels

‘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)

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

Growing Up in Scotland: A Study Following the Lives of Scotland's Children

The first research report on Sweep 1 findings of the Growing Up in Scotland stud

Symptom management in people dying with COVID-19: multinational observational study

Objectives To describe multinational prescribing practices by palliative care services for symptom management in patients dying with COVID-19 and the perceived effectiveness of medicines.Methods We surveyed specialist palliative care services, contacted via relevant organisations between April and July 2020. Descriptive statistics for categorical variables were expressed as counts and percentages. Content analysis explored free text responses about symptom management in COVID-19. Medicines were classified using British National Formulary categories. Perceptions on effectiveness of medicines were grouped into five categories; effective, some, limited or unclear effectiveness, no effect.Results 458 services responded; 277 UK, 85 rest of Europe, 95 rest of the world, 1 missing country. 358 services had managed patients with confirmed or suspected COVID-19. 289 services had protocols for symptom management in COVID-19. Services tended to prescribe medicines for symptom control comparable to medicines used in people without COVID-19; mainly opioids and benzodiazepines for breathlessness, benzodiazepines and antipsychotics for agitation, opioids and cough linctus for cough, paracetamol and non-steroidal anti-inflammatory drugs for fever, and opioids and paracetamol for pain. Medicines were considered to be mostly effective but varied by patient’s condition, route of administration and dose.Conclusions Services were largely consistent in prescribing for symptom management in people dying with COVID-19. Medicines used prior to COVID-19 were mostly considered effective in controlling common symptoms

Soil methane sink capacity response to a long-term wildfire chronosequence in Northern Sweden

Boreal forests occupy nearly one fifth of the terrestrial land surface and are recognised as globally important regulators of carbon (C) cycling and greenhouse gas emissions. Carbon sequestration processes in these forests include assimilation of CO2 into biomass and subsequently into soil organic matter, and soil microbial oxidation of methane (CH4). In this study we explored how ecosystem retrogression, which drives vegetation change, regulates the important process of soil CH4 oxidation in boreal forests. We measured soil CH4 oxidation processes on a group of 30 forested islands in northern Sweden differing greatly in fire history, and collectively representing a retrogressive chronosequence, spanning 5000 years. Across these islands the build-up of soil organic matter was observed to increase with time since fire disturbance, with a significant correlation between greater humus depth and increased net soil CH4 oxidation rates. We suggest that this increase in net CH4 oxidation rates, in the absence of disturbance, results as deeper humus stores accumulate and provide niches for methanotrophs to thrive. By using this gradient we have discovered important regulatory controls on the stability of soil CH4 oxidation processes that could not have not been explored through shorter-term experiments. Our findings indicate that in the absence of human interventions such as fire suppression, and with increased wildfire frequency, the globally important boreal CH4 sink could be diminished

Experiences of staff providing specialist palliative care during COVID-19: a multiple qualitative case study

Objective: To explore the experiences of, and impact on, staff working in palliative care during the COVID-19 pandemic. Design: Qualitative multiple case study using semi-structured interviews between November 2020 and April 2021 as part of the CovPall study. Data were analysed using thematic framework analysis. Setting: Organisations providing specialist palliative services in any setting. Participants: Staff working in specialist palliative care, purposefully sampled by the criteria of role, care setting and COVID-19 experience. Main outcome measures: Experiences of working in palliative care during the COVID-19 pandemic. Results: Five cases and 24 participants were recruited (n = 12 nurses, 4 clinical managers, 4 doctors, 2 senior managers, 1 healthcare assistant, 1 allied healthcare professional). Central themes demonstrate how infection control constraints prohibited and diluted participants’ ability to provide care that reflected their core values, resulting in experiences of moral distress. Despite organisational, team and individual support strategies, continually managing these constraints led to a ‘crescendo effect’ in which the impacts of moral distress accumulated over time, sometimes leading to burnout. Solidarity with colleagues and making a valued contribution provided ‘moral comfort’ for some. Conclusions: This study provides a unique insight into why and how healthcare staff have experienced moral distress during the pandemic, and how organisations have responded. Despite their experience of dealing with death and dying, the mental health and well-being of palliative care staff was affected by the pandemic. Organisational, structural and policy changes are urgently required to mitigate and manage these impacts

The challenges of caring for people dying from COVID-19 : a multinational, observational study (CovPall)

Context Systematic data on the care of people dying with COVID-19 are scarce. Objectives To understand the response of and challenges faced by palliative care services during the COVID-19 pandemic, and identify associated factors. Methods We surveyed palliative care and hospice services, contacted via relevant organisations. Multivariable logistic regression identified associations with challenges. Content analysis explored free text responses. Results 458 services responded; 277 UK, 85 rest of Europe, 95 rest of the world; 81% cared for patients with suspected or confirmed COVID-19, 77% had staff with suspected or confirmed COVID-19; 48% reported shortages of Personal Protective Equipment (PPE), 40% staff shortages, 24% medicines shortages, 14% shortages of other equipment. Services provided direct care and education in symptom management and communication; 91% changed how they worked. Care often shifted to increased community and hospital care, with fewer admissions to inpatient palliative care units. Factors associated with increased odds of PPE shortages were: charity rather than public management (OR 3.07, 95% CI 1.81-5.20), inpatient palliative care unit rather than other settings (OR 2.34, 95% CI 1.46-3.75). Being outside the UK was associated with lower odds of staff shortages (OR 0.44, 95% CI 0.26-0.76). Staff described increased workload, concerns for their colleagues who were ill, whilst expending time struggling to get essential equipment and medicines, perceiving they were not a front-line service. Conclusion Palliative care services were often overwhelmed, yet felt ignored in the COVID-19 response. Palliative care needs better integration with health care systems when planning and responding to future epidemics/pandemics