Outcome measures from international older adult care home intervention research: a scoping review.

BACKGROUND: Care homes are increasingly important settings for intervention research to enhance evidence-informed care. For such research to demonstrate effectiveness, it is essential that measures are appropriate for the population, setting and practice contexts. OBJECTIVE: To identify care home intervention studies and describe the resident outcome measures used. DESIGN: Scoping review. METHODS: We reviewed international care home research published from 2015 to August 2022. We searched MEDLINE, EMBASE, CINAHL and ASSIA. We included any intervention study conducted in a care home, reporting resident outcomes. We extracted resident outcome measures, organised these using the domains of an adapted framework and described their use. RESULTS: From 7,330 records screened, we included 396 datasets reported in 436 publications. These included 12,167 care homes and 836,842 residents, with an average of 80 residents per study. The studies evaluated 859 unique resident outcomes 2,030 times using 732 outcome measures. Outcomes were evaluated between 1 and 112 times, with 75.1% of outcomes evaluated only once. Outcome measures were used 1-120 times, with 68.4% of measures used only once. Only 14 measures were used ≥20 times. Functional status, mood & behaviour and medications were the commonest outcome domains assessed. More than half of outcomes were assessed using scales, with a fifth using existing records or administrative data. CONCLUSIONS: There is significant heterogeneity in the choice and assessment of outcomes for intervention research in care homes. There is an urgent need to develop a consensus on useful and sensitive tools for care homes, working with residents, families and friends and staff.

Bereavement training in the workplace, can it help bridge the grief support gap? A qualitative evaluation of employers' and employees' views

BackgroundBereavement support is lacking and inequitable despite an excess need exacerbated by COVID-19 and recent reports highlighting the need for consistency. Literature has emphasised the key role communities including employers and public facing organisations could have in caring for the bereaved.AimsTo establish if bereavement training for employers and public facing organisations is beneficial, how it should be provided, to whom and whether associated policy change is required?SettinIn 2021 St Oswald's Hospice, Newcastle started providing bereavement training for employers and employees in public and private sector organisations. To date 343 participants from 105 regional and national organisations including local authorities, charities, universities, and health and emergency-service providers have been trained.MethodsParticipants from the 105 organisations were asked for expressions of interest for participation in qualitative semi structured interviews. Purposive sampling selected 16 people ensuring data sufficiency and representation from all employment sectors.ResultsResults were organised around four main themes: The unique challenges faced by employees and employers following a bereavement, the gap in bereavement training provision (including recommendations for inclusion and expansion), training should be tiered and bespoke (but basic training should be universally received) and change in (organisational and governmental) bereavement policies are required.ConclusionsEmployees of varying grades and professions recommend tiered bereavement training for employing organisations. Perceived benefits include improved support and subsequently mental and physical wellbeing of employees, harmonious and efficient organisations and the development of supportive and compassionate communities. Recommendations for organisational and governmental bereavement policies include paid leave as standard with flexibility to respond appropriately to individual situations.

Developing a minimum data set for older adult care homes in the UK: exploring the concept and defining early core principles.

Reforms to social care in response to the COVID-19 pandemic, in the UK and internationally, place data at the heart of proposed innovations and solutions. The principles are not well established of what constitutes core, or minimum, data to support care home residents. Often, what is included privileges data on resident health over day-to-day care priorities and quality of life. This Personal View argues for evidence-based principles on which to base the development of a UK minimum data set (MDS) for care homes. Co-produced work involving care home staff and older people working with stakeholders is required to define and agree the format, content, structure, and operationalisation of the MDS. Implementation decisions will determine the success of the MDS, affecting aspects including data quality, completeness, and usability. Care home staff who collect the data need to benefit from the MDS and see value in their contribution, and residents must derive benefit from data collection and synthesis.

Palliative and end of life care Experiences of people of African and Caribbean dEscent during COVID-19 (PEACE)

What we knewPeople of African and Caribbean descent are less likely to access palliative and end of life care. It is unclear why they are so poorly served by our services and how COVID-19 has exacerbated this.What we wanted to knowWe sought bereaved relatives’, health and social care professionals’ and community workers’ views on experiences of and barriers to palliative and end of life care and suggestions for improvement.MethodsPublic recruitment was utilised. Over 150 diverse organisations throughout the UK were contacted. Qualitative semi-structured interviews were conducted with a diverse sample of 26 bereaved relatives and 13 professionals.FindingsThere were three key themes:Representation, encompassing discrimination and racism.Personalisation, including culture and the impact of COVID-19.Awareness and Access, including support before and after death and communication and involvement in decision-making.Participants recommend services shouldRepresentIdentify and acknowledge racism and discrimination in palliative care provision.Ensure better representation of African and Caribbean communities within services and in public facing material.PersonaliseAdapt services to ensure they are culturally and religiously competent:Recognise diversity in cultural and religious needs.Challenge racial and cultural stereotypes.Enable equitable remote engagement.Ensure awareness and educationBetter integrate services within communities by working with faith/community leaders.Raise awareness of the value of palliative care services in all communities.Provide training/education for professionals to build confidence and competence.ConclusionPalliative care was perceived as inadequate during the pandemic. Inequities in care provision were exacerbated, to the detriment of people of African and Caribbean descent who were disproportionately and uniquely effected. Palliative care services and local communities could and should learn from each other, to enhance equitable access to appropriate care for all. Significant investment in services and communities may be required.

A national study of burnout and spiritual health in UK general practitioners during the COVID-19 pandemic.

OBJECTIVES: To quantify the burnout and spiritual health of general practitioners (GPs) in the United Kingdom (UK) who worked during the Covid-19 Pandemic. DESIGN: Online survey, April/May 2021, distributed via emails to general practices, Clinical Commissioning Groups (CCGs), Health boards, Clinical Research Networks, professional groups, social media GP groups and networks. SETTING: United Kingdom. PARTICIPANTS: 1318 GPs who had worked in the National Health Service (NHS) during the COVID-19 pandemic (March 2020 -May 2021). MAIN OUTCOME MEASURES: Burnout scores, measured by the Maslach Burnout Inventory (MBI) for Medical Personnel; spiritual health, measured using the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being, Non-Illness (FACIT-SP-NI). RESULTS: 19% of surveyed GPs were at the highest risk for burnout, using accepted MBI 'cut off' levels. There was no evidence of a difference in burnout by gender, ethnicity, or length of service. GP burnout was associated with GP spiritual health, regardless of identification with a religion. GPs with low spiritual health were five times more likely to be in the highest risk group for burnout. CONCLUSIONS: Burnout is at crisis levels amongst GPs in the UK NHS. A comprehensive response is required, identifying protective and precipitating factors for burnout. The potentially protective impact of spiritual health merits further investigation.

Improving discussions about resuscitation in COVID-19

AimsThis research aims to understand relatives’ and carers’ experiences of discussions about resuscitation. Findings are needed to inform policy and practice about what works well and how discussions about resuscitation need to improve.BackgroundDo Not Attempt Cardiopulmonary Resuscitation (DNACPR) discussions have been especially challenging during the pandemic. Hospital visiting restrictions and untimely deaths due to COVID-19 have disrupted usual modes of communication between staff, patients and relatives. There have been reports of blanket DNACPR decisions being applied to older people and complaints about communication are common. This is distressing for patients and families and costly for the NHS.MethodsThis qualitative research uses semi-structured interviews to explore the experiences of people who discussed resuscitation on behalf of a relative during the COVID-19 pandemic. An interview topic guide was developed in collaboration with patients and public involvement partners. Interviews were transcribed verbatim, and analysed using framework analysis.Results18 semi-structured interviews have been undertaken to date. Analysis has identified the following themes:The importance of communication. This includes the timing of communication about DNACPR and examples of good practice and the lack of information about DNACPR for patients and families.The multiple dimensions of resuscitation and DNACPR, with misunderstanding about what resuscitation involves, how the decision about DNACPR is made, and by whom.Wide-ranging impacts of the DNACPR decision, feeling overlooked and disregarded by the medical team, guilt at not contesting a DNACPR decision, and consequent mistrust of the healthcare system.We aim to complete over 30 interviews by March 2022. Recruitment will continue until inductive thematic saturation.ConclusionUrgent action is needed to improve communication and ensure appropriate DNACPR discussions. Current practice results in frequent misunderstandings and lasting negative effects which may have detrimental consequences for bereavement reactions and future relationships with healthcare professionals.

COVID-19, Older People’s Alcohol Use and Engagement With Support: A Rapid Evidence Synthesis

COVID-19, and associated restrictions, have likely impacted older people’s alcohol use and related support needs, given disrupted routines and stress increase alcohol use in older populations. This rapid evidence synthesis aimed to examine older people’s (aged 50+) alcohol use, and engagement with alcohol support services during COVID-19. Seventy-six articles were identified through systematic database searches, reporting 63 survey, five qualitative, three pilot, and five hospital admission studies;of general and service-user populations of older drinkers. Data were drawn together through narrative synthesis. Alcohol use increased for up to 32% of older people, including service-users;particularly older women. Increased use was linked to anxiety, depression and emotional distress. Decreased use was more common in some older populations;particularly Mediterranean. Barriers such as web access and safe transport affected older service-users’ engagement with support. Support to address hazardous alcohol use amongst older people must be prioritised in wake of the pandemic.

Effects of Digital Technologies on Older People's Access to Health and Social Care: Umbrella Review.

BACKGROUND: The 2020 COVID-19 pandemic prompted the rapid implementation of new and existing digital technologies to facilitate access to health and care services during physical distancing. Older people may be disadvantaged in that regard if they are unable to use or have access to smartphones, tablets, computers, or other technologies. OBJECTIVE: In this study, we synthesized evidence on the impact of digital technologies on older adults' access to health and social services. METHODS: We conducted an umbrella review of systematic reviews published from January 2000 to October 2019 using comprehensive searches of 6 databases. We looked for reviews in a population of adults aged ≥65 years in any setting, reporting outcomes related to the impact of technologies on access to health and social care services. RESULTS: A total of 7 systematic reviews met the inclusion criteria, providing data from 77 randomized controlled trials and 50 observational studies. All of them synthesized findings from low-quality primary studies, 2 of which used robust review methods. Most of the reviews focused on digital technologies to facilitate remote delivery of care, including consultations and therapy. No studies examined technologies used for first contact access to care, such as online appointment scheduling. Overall, we found no reviews of technology to facilitate first contact access to health and social care such as online appointment booking systems for older populations. CONCLUSIONS: The impact of digital technologies on equitable access to services for older people is unclear. Research is urgently needed in order to understand the positive and negative consequences of digital technologies on health care access and to identify the groups most vulnerable to exclusion.

Palliative medicine trainees be should learn about frailty: meta-synthesis and Delphi study to establish curriculum content.

OBJECTIVES: Frailty is common and highly associated with morbidity and mortality, a fact that has been highlighted by COVID-19. Understanding how to provide palliative care for frail individuals is an international priority, despite receiving limited mention in Palliative Medicine curricula or examinations worldwide. This study aimed to synthesise evidence and establish expert consensus on what should be included in a Palliative-Medicine Specialist Training Curriculum for frailty. METHODS: Literature Meta-synthesis conducted by palliative medicine, frailty and education experts produced a draft curriculum with Bologna based Learning-Outcomes. A Delphi study asked experts to rate the importance of Learning-Outcomes for specialist-training completion and propose additional Learning-Outcomes. This process was repeated until 70% consensus was achieved for over 90% of Learning-Outcomes. Experts divided Learning-Outcomes into specific (for inclusion in a frailty subsection) or generic (applicable to other palliative conditions). The Delphi panel was Subject Matter Experts: Palliative-Medicine Consultants (n=14) and Trainees (n=10), representing hospital, community, hospice and care home services and including committee members of key national training organisations. A final reviewing panel of Geriatric Medicine Specialists including experts in research methodology, national training requirements and frailty were selected. RESULTS: The meta-synthesis produced 114 Learning-Outcomes. The Delphi Study and Review by Geriatric Medicine experts resulted in 46 essential and 33 desirable Learning-Outcomes. CONCLUSIONS: This frailty curriculum is applicable internationally and highlights the complex and unique palliative needs of frail patients. Future research is required to inform implementation, educational delivery and service provision.

Community Ageing Research 75+ (CARE75+) REMOTE study: a remote model of recruitment and assessment of the health, well-being and social circumstances of older people.

INTRODUCTION: The Community Ageing Research 75+ (CARE75+) study is a longitudinal cohort study collecting extensive health and social data, with a focus on frailty, independence and quality of life in older age. CARE75+ was the first international experimental frailty research cohort designed using trial within cohorts (TwiCs) methodology, aligning epidemiological research with clinical trial evaluation of interventions to improve the health and well-being of older people. CARE75+ REMOTE is an extension of CARE75+ using a remote model that does not require face-to-face interactions for data collection in the current circumstances of a global pandemic and will provide an efficient, sustainable data collection model. METHODS AND ANALYSIS: Prospective cohort study using TwiCs. One thousand community-dwelling older people (≥75 years) will be recruited from UK general practices by telephone. Exclusions include: nursing home/care home residents; those with an estimated life expectancy of 3 months or less; and people receiving palliative care. DATA COLLECTION: Assessments will be conducted by telephone, web-submission or postal questionnaire: baseline, 6 months, 12 months, 18 months, 24 months, 30 months and 36 months. Measures include activities of daily living, mood, health-related quality of life, comorbidities, medications, frailty, informal care, healthcare and social care service use. Consent will be sought for data linkage and invitations to additional studies (sub-studies). ETHICS AND DISSEMINATION: CARE75+ was approved by the National Research Ethics Service (NRES) Committee Yorkshire and the Humber-Bradford Leeds 10 October 2014 (14/YH/1120). CARE75+ REMOTE (amendment 13) was approved on the 18th November 2020. Consent is sought if an individual is willing to participate and has capacity to provide informed consent. Consultee assent is sought if an individual lacks capacity. Results will be disseminated in peer-reviewed scientific journals and conferences. Results will be summarised and disseminated to study participants via newsletters, local engagement events and on a bespoke website. TRIAL REGISTRATION NUMBER: ISRCTN16588124.

Factors associated with carer psychological and physical health during end-of-life caregiving: an observational analysis of a population-based post-bereavement survey of carers of people with cancer.

OBJECTIVE: Family caregivers play an essential role in end-of-life care but suffer considerable impact on their own health. A better understanding of main factors related to carers' health is important to inform interventions. The purpose of the study was to test for the first time the potential impact of a comprehensive set of observable variables on carer health during end-of-life caregiving within a population-based carer sample. DESIGN: National retrospective, cross-sectional, 4-month post-bereavement postal census survey of family carers of people who died from cancer. SETTING AND PARTICIPANTS: Relatives who registered a death from cancer during a 2-week period in England were identified from death certificates by the Office of National Statistics; response rate was 1504/5271 (28.5%). OUTCOME MEASURES: Carers' mental health was measured through General Health Questionnaire (GHQ)-12; general health was measured through EuroQoL EQ-Visual Analogue Scale (EQ-5D VAS). METHODS: Survey questions to measure potential variables associated with carer health were based on past research and covered patients' symptoms and functioning; caregiving activities and hours; informal and formal help received; work hours, other caregiving, volunteering; changes to work, income and expenditure; sleep and relaxation; and demographic variables. Bivariate analyses and ordinary least square regression were performed to investigate these variables' relationship with outcomes. RESULTS: Patients' psychological symptoms and functioning, caregiving hours, female gender and self-sought formal help related to worse mental health. General practitioner and social care input and relaxation related to better mental health. Patients' psychological symptoms, caregiving hours and female gender were associated with worse general health, and older age, employment and relaxation were associated with better general health. CONCLUSIONS: Improvements in carers' health overall may be made by focusing on potential impacts of patients' psychological symptoms on carers, facilitating respite and relaxation, and paying particular attention to factors affecting female carers.

National Early Warning Scores and COVID-19 deaths in care homes: an ecological time-series study.

OBJECTIVES: To investigate whether National Early Warning Scores (NEWS/NEWS2) could contribute to COVID-19 surveillance in care homes. SETTING: 460 care home units using the same software package to collect data on residents, from 46 local authority areas in England. PARTICIPANTS: 6464 care home residents with at least one NEWS recording. EXPOSURE MEASURE: 29 656 anonymised person-level NEWS from 29 December 2019 to 20 May 2020 with component physiological measures: systolic blood pressure, respiratory rate, pulse rate, temperature and oxygen saturation. Baseline values for each measure calculated using 80th and 20th centile scores before March 2020. OUTCOME MEASURE: Cross-correlation comparison of time series with Office for National Statistics weekly reported registered deaths of care home residents where COVID-19 was the underlying cause of death, and all other deaths (excluding COVID-19) up to 10 May 2020. RESULTS: Deaths due to COVID-19 were registered from 23 March 2020 in the local authority areas represented in the study. Between 23 March 2020 and 10 May 2020, there were 5753 deaths (1532 involving COVID-19 and 4221 other causes). We observed a rise in the proportion of above-baseline NEWS beginning 16 March 2020, followed 2 weeks later by an increase in registered deaths (cross-correlation of r=0.82, p<0.05 for a 2 week lag) in corresponding local authorities. The proportion of above-baseline oxygen saturation, respiratory rate and temperature measurements also increased approximately 2 weeks before peaks in deaths. CONCLUSIONS: NEWS could contribute to COVID-19 disease surveillance in care homes during the pandemic. Oxygen saturation, respiratory rate and temperature could be prioritised as they appear to signal rise in mortality almost as well as NEWS. This study reinforces the need to collate data from care homes, to monitor and protect residents' health. Further work using individual level outcome data is needed to evaluate the role of NEWS in the early detection of resident illness.

Experiences of a National Early Warning Score (NEWS) intervention in care homes during the COVID-19 pandemic: a qualitative interview study.

BACKGROUND: The COVID-19 pandemic has taken a heavy toll on the care home sector, with residents accounting for up to half of all deaths in Europe. The response to acute illness in care homes plays a particularly important role in the care of residents during a pandemic. Digital recording of a National Early Warning Score (NEWS), which involves the measurement of physical observations, started in care homes in one area of England in 2016. Implementation of a NEWS intervention (including equipment, training and support) was accelerated early in the pandemic, despite limited evidence for its use in the care home setting. OBJECTIVES: To understand how a NEWS intervention has been used in care homes in one area of North-East England during the COVID-19 pandemic, and how it has influenced resident care, from the perspective of stakeholders involved in care delivery and commissioning. METHODS: A qualitative interview study with care home (n=10) and National Health Service (n=7) staff. Data were analysed using thematic analysis. RESULTS: Use of the NEWS intervention in care homes in this area accelerated during the COVID-19 pandemic. Stakeholders felt that NEWS, and its associated education and support package, improved the response of care homes and healthcare professionals to deterioration in residents' health during the pandemic. Healthcare professionals valued the ability to remotely monitor resident observations, which facilitated triage and treatment decisions. Care home staff felt empowered by NEWS, providing a common clinical language to communicate concerns with external services, acting as an adjunct to staff intuition of resident deterioration. CONCLUSIONS: The NEWS intervention formed an important part of the care home response to COVID-19 in the study area. Positive staff perceptions now need to be supplemented with data on the impact on resident health and well-being, workload, and service utilisation, during the pandemic and beyond.

Trends in health expectancies: a systematic review of international evidence.

OBJECTIVES: A clear understanding of whether increases in longevity are spent in good health is necessary to support ageing, health and care-related policy. DESIGN: We conducted a systematic review to update and summarise evidence on trends in health expectancies, in Organisation for Economic Co-operation and Development (OECD) high-income countries. DATA SOURCES: Four electronic databases (MEDLINE, 1946-19 September 2019; Embase 1980-2019 week 38; Scopus 1966-22 September 2019, Health Management Information Consortium, 1979-September 2019), and the UK Office for National Statistics website (November 2019). ELIGIBILITY CRITERIA: English language studies published from 2016 that reported trends in healthy, active and/or disability-free life expectancy in an OECD high-income country. DATA EXTRACTION AND SYNTHESIS: Records were screened independently by two researchers. Study quality was assessed using published criteria designed to identify sources of bias in studies reporting trends, and evidence summarised by narrative synthesis. FINDINGS: Twenty-eight publications from 11 countries were included, covering periods from 6 to 40 years, between 1970 and 2017. In most countries, gains in healthy and disability-free life expectancy do not match the growth in total life expectancy. Exceptions were demonstrated for women in Sweden, where there were greater gains in disability-free years than life expectancy. Gains in healthy and disability-free life expectancy were greater for men than women in most countries except the USA (age 85), Japan (birth), Korea (age 65) and Sweden (age 77). CONCLUSION: An expansion of disability in later life is evident in a number of high-income countries, with implications for the sustainability of health and care systems. The recent COVID-19 pandemic may also impact health expectancies in the longer term.

SEeking AnsweRs for Care Homes during the COVID-19 pandemic (COVID SEARCH).

The care and support of older people residing in long-term care facilities during the COVID-19 pandemic has created new and unanticipated uncertainties for staff. In this short report, we present our analyses of the uncertainties of care home managers and staff expressed in a self-formed closed WhatsApp™ discussion group during the first stages of the pandemic in the UK. We categorised their wide-ranging questions to understand what information would address these uncertainties and provide support. We have been able to demonstrate that almost one-third of these uncertainties could have been tackled immediately through timely, responsive and unambiguous fact-based guidance. The other uncertainties require appraisal, synthesis and summary of existing evidence, commissioning or provision of a sector- informed research agenda for medium to long term. The questions represent wider internationally relevant care home pandemic-related uncertainties.

Commentary: COVID in care homes-challenges and dilemmas in healthcare delivery.

The COVID-19 pandemic has disproportionately affected care home residents internationally, with 19-72% of COVID-19 deaths occurring in care homes. COVID-19 presents atypically in care home residents and up to 56% of residents may test positive whilst pre-symptomatic. In this article, we provide a commentary on challenges and dilemmas identified in the response to COVID-19 for care homes and their residents. We highlight the low sensitivity of polymerase chain reaction testing and the difficulties this poses for blanket screening and isolation of residents. We discuss quarantine of residents and the potential harms associated with this. Personal protective equipment supply for care homes during the pandemic has been suboptimal and we suggest that better integration of procurement and supply is required. Advance care planning has been challenged by the pandemic and there is a need to for healthcare staff to provide support to care homes with this. Finally, we discuss measures to implement augmented care in care homes, including treatment with oxygen and subcutaneous fluids, and the frameworks which will be required if these are to be sustainable. All of these challenges must be met by healthcare, social care and government agencies if care home residents and staff are to be physically and psychologically supported during this time of crisis for care homes.