Claire Goodman

University of Hertfordshire | UH · Centre for Research in Public health and Community Care

Home care (or home health care) makes a critical contribution to the care of older people, yet many people have little experience or knowledge of this service, and its component parts. Many older adults receive home care, but the nature of the support varies from country to country. This Forum Article considers how home care is defined, its scope a...

Background The Developing research resources And minimum data set for Care Homes’ Adoption and use or DACHA study aims to create a prototype minimum data set combining residents’ information recorded by care homes with their data held in health and social care data sets. The DACHA minimum data set will contain information on quality of life. Intern...

Background: Care home residents have complex needs, and minimum data sets (MDSs) provide a unique source of information on their health and wellbeing. Although MDSs were first developed to monitor quality and costs of care, they can make an important contribution to research. Aim: To describe the research applications of data from care home MDSs, a...

Background UK general practice has been described as being in crisis. A shortage and exodus of GPs is an urgent and challenging problem, attracting significant media attention, widespread public debate, and policy action. Aim Our review aims to examine which aspects of the healthcare system affect GP workforce sustainability, how, why, and for who...

Purpose Mandatory digital social care records and a standardised schedule for collecting information on home care clients are proposed for regulated adult social care providers in England. This is akin to a minimum dataset (MDS). This study aimed to understand current data collection practices in home care, and identify where support for implementa...

Introduction Information on care home residents is captured in lots of datasets (care home records, GP records, community nursing etc) but little of this information is currently analysed in a way that is useful for care providers, current or future residents and families or that realises the potential of data to enhance care provision. The DACHA s...

Background digitalisation within English care homes offers potential to make more effective use of substantial data collected by staff during care planning and recording. A pilot minimum data set (MDS) was co-designed with stakeholders based on two digital care records (DCRs) with additional structured measures. Objectives to explore care home staf...

Background We developed a prototype minimum data set (MDS) for English care homes, assessing feasibility of extracting data directly from digital care records (DCRs) with linkage to health and social care data. Methods Through stakeholder development workshops, literature reviews, surveys and public consultation we developed an aspirational MDS. We...

Background: To maintain good standards of care, evaluations of policy interventions or potential improvements to care are required. A number of quality of life (QoL) measures could be used but there is little evidence for England as to which measures would be appropriate. Using data from a pilot Minimum Data Set (MDS) for care home residents from t...

Introduction There are not enough general practitioners (GPs) in the UK National Health Service. This problem is worse in areas of the country where poverty and underinvestment in health and social care mean patients experience poorer health compared with wealthier regions. Encouraging more doctors to choose and continue in a GP career is a governm...

Objectives To assess the feasibility of capturing older care home residents’ quality of life (QoL) in digital social care records (DSCRs) and the construct validity (hypothesis testing) and internal consistency (Cronbach’s Alpha) of four QoL measures Design Cross-sectional data collected in wave one of the DACHA ( D eveloping resources A nd minimu...

Purpose Rasch analysis and exploratory factor analysis (EFA) were used to evaluate the structural validity of the ASCOT-Proxy measures completed by staff on behalf of older adults resident in care homes, by comparison to the ASCOT-SCT4, the measure of social care-related quality of life (SCRQoL) from which the ASCOT-Proxy was developed. Methods EF...

Dementia-friendly communities (DFCs) are a policy-endorsed approach to community engagement in England that promotes social inclusion to enable people affected by dementia to live well. Research suggests that physical activity is beneficial in encouraging social connection and improving health. A mixed method sequential study design in England invo...

IntroductionRandomised controlled trials (RCTs) conducted in care home settings address a range of health conditions impacting older people, but often include a common core of data about residents and the care home environment. These data can be used to inform service provision, but accessing these data can be challenging. Methods The Virtual Inter...

Background In care home research, residents are rarely included in patient and public involvement and engagement (PPIE) despite their lived experiences of day-to-day care. This paper reports on a novel approach to PPIE, developed in response to Covid-19, and utilised in a large UK-based study focused on care homes. PPIE sessions were facilitated on...

Background Constant observation is a model of care used in hospitals to manage a patient’s safety. For people with dementia this is often due to a risk of falling or from displaying behaviours considered to carry a risk of harm. Person‐centred approaches are recognised as best practice for people with dementia, but this can be difficult to achieve...

Introduction increasing demand for care, high staff turnover and low numbers of new staff are causing significant staff shortages in the long-term-care (LTC) sector. Solutions need to 1) take the heterogeneity of organisational and staff characteristics into account, and 2) make use of the large volume of literature describing the reasons staff joi...

Context: In many countries, there is a specification for information that should be collected by care homes. So-called ‘minimum data-sets’ (MDS) are often lengthy, and report on resident health and wellbeing, staff, and facilities. In the UK, the absence of any easily accessible data on the care home population was highlighted at the start of the C...

Problem: There are not enough General Practitioners (GPs) in the UK National Health Service. This problem is worse in areas of the country where poverty and underinvestment in health and social care mean patients experience poorer health compared with wealthier regions. Encouraging more doctors to choose and continue in a GP career is a government...

Background: Optimising timely discharge from hospitals is an international priority. In 2020, the Coronavirus disease 2019 (COVID-19) pandemic resulted in the United Kingdom Government implementing the Discharge to Assess (D2A) model across England. This funded temporary care home placement to allow further recovery and assessment of care needs ou...

Objectives: Constant observation is used in hospitals with people with dementia to manage their safety. However, opportunities for proactive care are not consistently recognised or utilised. A systematic review of constant observation was conducted to understand measures of effectiveness and facilitators for person-centred approaches. Method: El...

Context: During the COVID-19 pandemic, UK care homes rapidly adopted videoconferencing to communicate with health and social care colleagues. Studies show that health and social care professionals adapted well to online consultations. Less well known are the views of care home staff on using online consultations and how it impacted their workload a...

Background. Care home managers’ leadership is recognised as directly influencing the care received by people living with dementia. What enables care home managers to promote and sustain person-centred care for residents is less well understood. Method. A mixed-methods systematic review synthesised evidence on care home managers’ leadership on the d...

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 ou...

Objectives: The lack of cognitive assessment tools suitable for people with minimal formal education is a barrier to identify cognitive impairment in Vietnam. Our aims were to (i) evaluate the feasibility of conducting the Montreal Cognitive Assessment-Basic (MoCA-B) and Informant Questionnaire On Cognitive Decline in the Elderly (IQCODE) remotely...

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...

Introduction: Health and care data are routinely collected about care home residents in England, yet there is no way to collate these data to inform benchmarking and improvement. The Developing research resources And minimum data set for Care Homes' Adoption and use study has developed a prototype minimum data set (MDS) for piloting. Methods and...

Research has the potential to inform and enhance the care and experiences of people living and working in care homes. While there is a growing interest in research relevant for care homes, there is also a need to ensure that staff, residents and their families and friends are supported when considering taking part in research; particularly in a typ...

OBJECTIVES: The lack of cognitive assessment tools suitable for people with minimal formal education is a barrier to identifying cognitive impairment in Vietnam. Our aims were to (i) evaluate the feasibility of conducting the Montreal Cognitive Assessment-Basic (MoCA-B) and Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE) remote...

The Enhanced Health in Care Homes framework for England sets out standards for how primary care should work with care homes. How care home staff and General Practitioners work together and the quality of their working relationships are core to resident healthcare. This study explored the current models of care and relationships between General Prac...

Objectives In the context of a growing number of dementia friendly communities (DFCs) globally, a need remains for robust evaluation, and for tools to capture relevant evidence. This paper reports the development of a suite of evaluation resources for DFCs through a national study in England. Methods Fieldwork took place in six diverse case study...

Background People living in care homes have experienced devastating impact from COVID-19. As interventions to prevent the transmission of COVID-19 are developed and evaluated, there is an urgent need for researchers to agree on the outcomes used when evaluating their effectiveness. Having an agreed set of outcomes that are used in all relevant tria...

Background Despite recent focus on improving health care in care homes, it is unclear what role general practitioners (GPs) should play. To provide evidence for future practice we set out to explore how GPs have been involved in such improvements. Methods Realist review incorporated theory-driven literature searches and stakeholder interviews, sup...

Long-term care homes play an essential role within health and social care. Successful measures to support older people at home for longer have led to increased prevalence of disability, frailty and cognitive impairment in those who live in care homes over the last two decades. The need for care home places is projected to increase for the next two...

Background Controlled drugs (CDs) such as opioids and midazolam are commonly used in end-of-life care symptom management for care home residents. Aim To review the published evidence concerning the prescribing, storage, use and disposal of CDs for end-of-life care for care home residents in the UK. Design Systematic review and narrative synthesis...

Background Frailty is clinically associated with multiple adverse outcomes, including reduced quality of life and functioning, falls, hospitalisations, moves to long-term care and mortality. Health services commonly focus on the frailest, with highest levels of need. However, evidence suggests that frailty is likely to be more reversible in people...

Background People living in care homes have experienced devastating impact from COVID-19. As interventions to prevent the transmission of COVID-19 are developed and evaluated, there is an urgent need for researchers to agree on the outcomes used when evaluating their effectiveness. Having an agreed set of outcomes that are used in all relevant tria...

Appendix 4 Data Set: Barriers and Enablers and Extracted Quotes

Appendix 1-3

Background: Care homes are complex settings to undertake intervention research. Barriers to research implementation processes can threaten studies' validity, reducing the value to residents, staff, researchers and funders. We aimed to (i) identify and categorise contextual factors that may mediate outcomes of complex intervention studies in care h...

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...

Background the COVID-19 pandemic disproportionately affected care home residents’ and staffs’ access to health care and advice. Health and social care professionals adapted rapidly to using video consultation (videoconferencing) technology without guidance. We sought to identify enablers and barriers to their use in supporting care home residents a...

Background Dementia Friendly Communities (DFCs) offer an approach to community engagement to improve the lives of people living with dementia and their family supporters. The involvement of those living with dementia is key to creating successful DFCs. This paper examines how people affected by dementia were involved in developing and designing DFC...

Background Care homes provide long term care for older people. Countries with standardised approaches to residents’ assessment, care planning and review (known as minimum data sets (MDS)) use the aggregate data to guide resource allocation, monitor quality, and for research. Less is known about how an MDS affects how staff assess, provide and revie...

Third sector dementia support is characterised by wide variation and a heavy reliance on volunteer engagement. While there has been a growth in the reach and diversity of different schemes, their short-term funding results in a loss of networks, collaborations and local knowledge. This practice paper reflects on strengthening community-based dement...

Background COVID-19 has had a devastating impact on care homes, their residents and staff. Over 37,000 UK care home residents have died from COVID-19; many more have experienced symptoms and distress (Scobie, 2021). There has been very limited examination of palliative and end-of-life care in care homes during COVID-19, or strategies to improve thi...

Care homes enable people with advanced physical and cognitive impairment to live well with 24-h support from staff. They are a feature of care systems in most countries. They have proved pivotal to the coronavirus disease 2019 (COVID-19) response. We searched Age and Ageing for care-home articles published since 2015. From these we collated 42 into...

Background Older people with multi-morbidities commonly experience an uncertain illness trajectory. Clinical uncertainty is challenging to manage, with risk of poor outcomes. Person-centred care is essential to align care and treatment with patient priorities and wishes. Use of evidence-based tools may support person-centred management of clinical...

Background Organising health-care services for residents living in care homes is an important area of development in the UK and elsewhere. Medical care is provided by general practitioners in the UK, and the unique arrangement of the NHS means that general practitioners are also gatekeepers to other health services. Despite recent focus on improvin...

Older people living in care homes should be considered part of the wider local community; however, little is known about what enables them to connect with people not paid to look after them or family members. Volunteering can complement paid and familial support. While volunteering is common in community settings, care home residents are less likel...

Background Palliative care for people with dementia dying in care homes is an important aspect of long-term care. Whilst there is consensus about the principles of palliative care, less is known about how care home staff negotiate and influence decisions around end of life and how organisational context shapes that process. Aim To explore the view...

Background Urinary incontinence is prevalent in nursing and residential care homes, and has a profound impact on residents’ dignity and quality of life. Treatment options are limited in these care contexts and care homes predominantly use absorbent pads to contain incontinence, rather than actively treat it. Transcutaneous posterior tibial nerve st...

Introduction Many care home residents have high levels of complex needs and their medical care is the responsibility of the general practitioner (GP) in UK. GPs have multiple roles, including gatekeeper for access to other healthcare services and often play a leadership role in the healthcare team. Our aim is to develop realist programme theories f...

Although literature on postdiagnostic support for people affected by young onset dementia acknowledges financial concerns, this topic has remained underresearched. The aim of this study was to explore the financial impact of a diagnosis of young onset dementia on individuals and families. An online survey, comprising binary yes/no, multiple‐respons...

Background Approximately 418,000 people live in care homes in the UK, yet accessible, robust data on care home populations and organisation are lacking. This hampers our ability to plan, allocate resources or prevent risk. Large randomised controlled trials (RCTs) conducted in care homes offer a potential solution. The value of detailed data on res...

Background Little is known about how the workforce influences quality in long term care facilities for older people. Staff numbers are important but do not fully explain this relationship. Objectives To develop theoretical explanations for the relationship between long-term care facility staffing and quality of care as experienced by residents. D...

Key points: • Quality Improvement Collaboratives bring staff from different organisations together to improve healthcare in care homes. • Healthcare improvement should align with existing work priorities and be led by staff with experience of collaboration. 2 • Care home staff can lead healthcare improvement if approaches and structures are adopted...

Background: Quality improvement collaboratives (QICs) bring together multidisciplinary teams in a structured process to improve care quality. How QICs can be used to support healthcare improvement in care homes is not fully understood. Methods: A realist evaluation to develop and test a programme theory of how QICs work to improve healthcare in...

We develop a conceptual framework based on a systematic and com-prehensive literature review on autonomous vehicle decision-making algorithms, interconnected sensor networks, and big geospatial data analytics in smart urban mobility systems. Building our argument by drawing on data collected from AAA, AHAS, AUVSI, BCG, Brookings, Capgemini, Gallup,...

UK care home residents are invisible in national datasets. The COVID-19 pandemic has exposed data failings that have hindered service development and research for years. Fundamental gaps, in terms of population and service demographics coupled with difficulties identifying the population in routine data are a significant limitation. These challenge...

Context: The work presented in this paper was undertaken during the first three months of the COVID-19 crisis in the UK. Objectives: The project is aimed to respond to questions and concerns raised by front-line care staff during this time, by producing research-based ‘Top Tips’ to complement emerging COVID-19 policy and practice guidelines. Method...

The Brazilian care home sector is underdeveloped, and the limited available evidence suggests that care quality falls below international standards. Development of the Brazilian care home sector could be associated with better outcomes for those receiving care, and more efficient use of resources across health and social care. Research has an impor...

Dementia-friendly communities (DFCs) are one way in which people living with dementia can be supported to be active, engaged and valued citizens. Quantitative evaluations of the experiences of those with dementia living within these communities are scarce. This article reports findings from a survey of people living with dementia on their experienc...

Introduction Care homes provide nursing and social care for older people who can no longer live independently at home. In the UK, there is no consistent approach to how information about residents’ medical history, care needs and preferences are collected and shared. This limits opportunities to understand the care home population, have a systemati...

Background: In the UK, most people with dementia die in the community and they often receive poorer end-of-life care than people with cancer. Objective: The overall aim of this programme was to support professionals to deliver good-quality, community-based care towards, and at, the end of life for people living with dementia and their families....

Background Approximately 418,000 people live in care homes in the UK, yet accessible, robust data on care home populations and organisation are lacking. This hampers our ability to plan, allocate resources or prevent risk. Large randomised controlled trials (RCTs) conducted in care homes offer a potential solution. The value of detailed data on res...

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 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...

Recent research on young onset dementia (formal diagnosis at age <65) evidences emerging work around pre-diagnosis, diagnosis and the need to improve post-diagnostic support for this group. An increased awareness of young onset dementia has led to the establishment of peer-support groups, support networks and the involvement of people affected by d...

Introduction Older people who live in care homes have a high level of need with complex health conditions. In addition to providing medical care to residents, general practitioners (GPs) play a role as gatekeeper for access to services, as well as leadership within healthcare provision. This review will describe how GPs were involved in initiatives...

The care home sector relies on nurses and care workers to deliver care to residents living with frailty and complex needs. However, attracting, recruiting and retaining staff is one of the biggest challenges facing this sector. There is evidence available that describes factors that influence staff decisions to join and/or remain in the care home w...

Background End of life care is often inadequate for people with dementia. Advanced care planning (ACP) has the potential to improve outcomes for people with dementia. The aim of this review is to establish the strength of the evidence and provide decision makers with a clear understanding of what is known about ACP for people living with dementia....

Engaging with older people who self-identify as lonely may help professionals in mental health and other services understand how they deal with loneliness. The evidence-base for effective interventions to address loneliness is inconclusive. This study aimed to explore how community-dwelling lonely older people in England manage their experiences of...

Organisational context is known to impact on the successful implementation of healthcare initiatives in care homes. We undertook a systematic mapping review to examine whether researchers have considered organisational context when planning, conducting, and reporting the implementation of healthcare innovations in care homes. Review data were mappe...