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Dr. Adaku Jennifer Agwunobi’s journey as an academic, entrepreneur, and creative embodies this year’s Black History Month theme, Reclaiming Narratives. Through her research on health inequalities, advocacy for digital inclusion, and work in music, she challenges narrow definitions, striving to make space for diverse voices in underrepresented fields.
Developing a set of key principles for care planning within older adult care homes: Study protocol for a modified Delphi survey
Background Older adult care homes in England are required to develop care plans on behalf of each of their residents and to make these documents available to those who provide care. However, there is a lack of formal agreement around the key principles that should inform the development of care plans in care homes for older adults. Using a modified Delphi survey, we intend to generate consensus on a set of key principles that should inform the care planning process. Methods and analysis A two-stage modified Delphi survey will be used to try to reach a consensus on a set of key principles to inform care planning within older adult care homes in England. An interdisciplinary panel of approximately 50 people with experience in care planning will be convened and invited to provide feedback on a set of key principles. We will use an iterative, quasi-anonymous, multistage approach with controlled feedback. In the first round, panellists will be asked to provide feedback on a draft document whose contents have been informed by a systematic scoping review and consultations with care home staff. The first round will be administered and subsequently analysed. The results from the first round will be fed back to the panel members and panellists will be asked to complete a second survey. In each round, panel members will use a 5-point unipolar scale to rate their agreement with the item. Consensus will be considered if ≥75% of participants rate an item as 4-5. Ethics and dissemination This study to which this protocol relates has been granted ethical approval by the University of Kent's Division for the Study of Law, Society and Social Justice Research Committee Ethics Panel (reference: 1006) on 9 April 2024. The results of this project will be disseminated through conferences and one or more peer-reviewed journals. In a subsequent research phase, the research team plans to share the key principles document developed through this modified Delphi survey with care home residents and their families and friends. We plan to invite their feedback through a series of focus groups with a view to developing a related document for the family and friends of care home residents.
Investigating Person-Centred Care Planning in Care Homes Across England: An Exploratory Study of Practices and Contextual Factors
Aims: To report how person-centred care principles are applied to care planning and to explore the contextual factors affecting their implementation in older adult care homes in England. Design: A combined framework analysis and quantitative content analysis study. Methods: Using a semi-structured questionnaire, we interviewed 22 care home managers in England, exploring topics around care planning processes. Audio recordings were transcribed verbatim. Transcripts were analysed through a combined framework approach and content analysis. Results: Most care home managers discussed person-centred care planning in terms of understanding residents' values and preferences and their engagement in decision-making. Factors facilitating person-centred planning implementation included accessible planning tools, supportive care home leadership, effective communication and collaborative partnerships. Inhibiting factors included regulatory and care practice misalignment, time constraints and adverse staffing conditions. Conclusion: Differences between care home practitioners' understanding and practice of person-centred care planning require further examination to improve understanding of the sector's complexity and to develop suitable care planning instruments. Implications for the Profession: Findings demonstrate a need for improved staff access to specialised person-centred care training and an opportunity for care home nursing practitioners to lead the co-development of digital person-centred care planning tools that reflect the reality of long-term care settings. Impact: Identifying factors influencing the implementation of holistic approaches to care planning makes clear the need for modernising long-term care policy and practice to adapt to the contemporary challenges of the care home sector. Reporting Method: Study reporting was guided by the Standards for Reporting Qualitative Research. Patient or Public Contribution: Two public involvement advisors with lived experience of caring for a relative living in a care home contributed to the development of the interview guide, advised on care home engagement, guided the interpretation of the findings and commented on the drafted manuscript.
Care in the Time of COVID, 2020
The Care in the Time of COVID project aimed to understand the mental health and lived experiences of adults with care experience during the UK’s first COVID-19 lockdown. Data were collected during the first UK lockdown, between 20 May and 19 June 2020, through an online Qualtrics survey. Participants were asked to self-identify as care-experienced by confirming they had spent some time in the care of a local authority (foster care, kinship care, residential or group home) before 18. They were asked about their: level of education, occupation (current and, prior to, 16 March 2020), access to outdoor space, whether they had been identified by the NHS as vulnerable to COVID-19, and whether they had suspected or confirmed COVID-19. The survey also included three validated measures: the Patient Health Questionnaire (PHQ-9), the Generalized Anxiety Disorder assessment (GAD-7), and the Oslo Social Support Scale (OSSS). Participants were also asked to submit a diary in response to one of four prompts. Two of the prompts remained the same throughout the project, and two prompts were changed weekly and were selected by the research team to encourage participants to reflect on a wide range of experiences. The survey was completed by 204 people. Most participants completed the survey once (n=178), a small number took part twice (n = 22) and four people completed the survey three times. At least one diary entry was provided by 140 people. Some people submitted more than one diary entry. Diaries also include pictures of participants' artwork, photographs and other materials.
The Perceived Impact of the COVID-19 Pandemic on the Mental Health and Well-being of Care-Experienced People
The impact of the coronavirus disease 2019 (COVID-19) pandemic on care-experienced people has been the subject of research, but important gaps remain in our understanding of how care-experienced people felt their mental health and well-being were affected by the pandemic. Care-experienced adults from across the UK were invited to complete a survey and submit a diary during the first lockdown. Responses were received from 140 people, aged eighteen to sixty-nine years. Most respondents reported that their mental health deteriorated due to the pandemic and lockdown. However, a substantial minority thought that either there had been no change or the lockdown had helped them make positive improvements. Improvements were attributed to stable housing and employment, support from services and transferable skills they had learnt in care. A minority of respondents referred to their care status in their diaries. Most diarists presented their experiences as being common to other, non-care-experienced, people. This article showcases the resilience of many care-experienced people, including some who made explicit reference to the benefits of coping strategies developed while in care. The findings of this study reveal that when provided with the right support, the care system can assist people to develop important life skills.
Implementation of RESTORE2 in Care Homes in England: A Mixed-Methods Evaluation
Context: Older adults are more susceptible to acute deterioration. Delayed recognition or response is linked to poor health outcomes and adverse events. Identification and management of deterioration is more difficult in this population due to increasingly complex healthcare needs and limited/no healthcare knowledge of some staff. Enhancing ability of care home staff to recognise and communicate concerns could reduce avoidable harm for residents at risk of or experiencing physical deterioration. Objective: To evaluate the implementation of RESTORE2, a physical deterioration and escalation tool, in care homes. Methods: A mixed-methods approach, comprising individual semi-structured interviews and online survey, was used. A total of 35 care home staff from 34 care homes took part in this evaluation. Findings: Implementation of the full RESTORE2 tool was low. Several challenges that impeded successful implementation including complexity, uncertainty over carers’ role in carrying out clinical observations, inadequate training and buy-in from health-service providers, need to be addressed. Nevertheless, some benefits including improved staff knowledge/confidence to identify deterioration, escalate and communicate concerns, as well as potential to reduce unnecessary healthcare utilisation particularly 999 calls and hospital admissions were reported. Limitations: This study was limited by the small sample size of the quantitative phase. The Covid-19 pandemic affected recruitment and engagement with care homes. Implications: RESTORE2 has a long way to go to become a common language in social care. Collaboration between health professionals and care staff is important for RESTORE2 to become embedded into practice. Further quantitative and qualitative research is required to strengthen the evidence base.
Care Planning Interventions for Care Home Residents: A Scoping Review
Context: Previous reviews of care planning (CP) interventions in care homes focus on higher quality research methodologies and exclusively consider advanced care planning (ACP), thereby excluding many intervention-based studies that could inform current practice. CP is concerned with residents’ current circumstances while ACP focuses on expressing preferences which relate to future care decisions. Objectives: To identify, map and summarise studies reporting CP interventions for older people in care homes. Methods: Seven electronic databases were searched from 1 January 2012 until 1 January 2022. Studies of CP interventions, targeted at older people (>60 years), whose primary place of residence was a care home, were eligible for inclusion. Two reviewers independently screened the titles and abstracts of 3778 articles. Following a full-text review of 404 articles, data from 112 eligible articles were extracted using a predefined data extraction form. Findings: Studies were conducted in 25 countries and the majority of studies took place in the United States, Australia and the UK. Most interventions occurred within nursing homes (61%, 68/112). More than 90% of interventions (93%, 104/112) targeted staff, and training was the most common focus (80%, 83/104), although only one included training for ancillary staff (such as cleaners and caterers). Only a third of the studies (35%, 39/112) involved family and friends, and 62% (69/112) described interventions to improve CP practices through multiple means. Limitations: Only papers written in English were included, so potentially relevant studies may have been omitted. Implications: Two groups of people – ancillary workers and family and friends – who could play a valuable role in CP were often not included in CP interventions. These oversights should be addressed in future research.
Children’s Experiences of Welfare in Modern Britain
The history of childhood and welfare in Britain through the eyes of children. 'Children’s Experiences of Welfare in Modern Britain' brings together the latest research as provided by the state, charities and families from 1830 to 1980. Demonstrating how the young were integral to the making, interpretation, delivery and impact of welfare services, the chapters consider a wide range of investments in young people’s lives, including residential institutions, emigration schemes, hospitals and clinics, schools, social housing and familial care. Drawing upon thousands of personal testimonies, including a wealth of writing by children themselves, the book shows that we can only understand the history and impact of welfare if we listen to children’s experiences.
'[Her] hostess ... is anxious to have her back when she is cured': The impact of the evacuation of children on wartime local services, England, 1939-1945
World War II had a profound, but uneven, impact on the delivery of services designed to support the bodies and minds of English children. This article, which is based on a study of a rural local authority located in North-West England, explores the influence of World War II on children's welfare services. Drawing on detailed case files relating to individual children and reports published by local and national policy makers, the article advances three related arguments which together nuance existing understandings of the conflict and its longer-term consequences. First, the article argues that many of the problems associated with evacuees were already familiar to medical and social work professionals. This awareness has important consequences for how we conceptualise the wartime proposals that attracted policy makers' attention. Second, the article shows that the arrival of evacuees into reception areas initially resulted in an expansion of children's services. A fuller understanding of Britain's welfare state, however, must acknowledge that local authorities continued to wield significant influence over the delivery of specialist services once the conflict ended. As a result, the priorities of local officials could lead to the needs of looked after children being overlooked despite wartime improvements to children's services. Finally, the article argues that amidst the totality of World War II, the British state remained unwilling to intrude on the rights of parents to influence the care of their children. Closer examination of the implementation of evacuation and the experiences of individuals reveals that important tensions existed between the state appointed experts and the civilians they were tasked with supporting.
Adapting in interaction involving Mandarin speakers with aphasia: A conversation analysis of turn initial responses to healthcare professionals’ questions
AbstractBackgroundAphasia is a communication disorder caused by brain damage. People with aphasia (PWA) often experience difficulties in interaction.MethodsThis study uses conversation analysis (CA) and examines the interactions of 10 PWA (5 fluent and 5 non‐fluent speakers) and their healthcare professionals.AimsThe study aims to to explore how Mandarin‐speaking PWA adapt to difficulties in initiating responses to questions from healthcare professionals. It also examines how the ways PWA adapt may vary across different types of aphasia.ResultsTwo adaptive practices were identified: turn initial repeats and turn initial iconic gesture. The findings suggest that fluent speakers with aphasia tended to adapt with turn initial repeats, while non‐fluent speakers relied more on iconic gestures in starting a response turn. These practices allow PWA to maintain progressivity in responding to questions and assist them in formulating answers.Conclusions & ImplicationsThe study provides empirical evidence on how linguistic and multimodal resources can enhance everyday interactions and be applied in interaction‐focused therapy for Mandarin‐speaking PWA.WHAT THIS PAPER ADDSWhat is already known on the subject Existing research has primarily focused on communication challenges and adaptation strategies among individuals with aphasia who speak English, German and Finnish. There is a noticeable gap in the literature concerning Mandarin speakers with aphasia and their experiences in everyday communication. To our knowledge, no study has yet explored the specific challenges they encounter and how they cope with them.What this paper adds to the existing knowledge This study explores the communication challenges faced by Mandarin speakers with aphasia during interactions with health professionals, with a particular focus on turn initial responses to questions. Two distinct approaches (i.e., ‘turn initial repeat’ and ‘turn initial iconic gesture’) to manage communicative difficulties were identified, with a possible relation between approaches and aphasia types. Fluent speakers compensated with ‘turn initial repeat’ whereas non‐fluent speakers employed ‘turn initial iconic gesture’ for successful communication with their health professionals.What are the potential or actual clinical implications of this work? The strategies initiated in response to question difficulties contribute to effective turn construction and represent valuable resources for PWA managing aphasia. The study offers empirical evidence on how these communication resources (both linguistical and multimodal) can enhance everyday interactions and be integrated into interaction‐focused therapy for Mandarin speakers with aphasia.
Exploring the long-term utility of remotely monitored FeNO suppression testing in severe asthma.
BACKGROUND: Confirmation of optimal inhaled corticosteroid use is essential before initiating biologic therapy. FeNO suppression testing (FeNOSuppT) is a proven phenotyping technique, however its long-term effect on clinical outcomes remains unclear. OBJECTIVES: To assess the real-world feasibility of delivering FeNOSuppT alongside digital inhaler monitoring, and to examine its effect on biologic initiation and clinical outcomes. METHODS: Prospective cohort study within seven UK severe asthma centres. Patients received a sensor-enabled ICS/LABA inhaler during an initial appointment between July 2020 and June 2022. A positive FeNOSuppT was defined as >42% FeNO reduction at short-term follow-up (typically 1-3 months post-baseline). Biologic initiation and clinical outcomes were compared at short-term and long-term (typically 12 months post-baseline) follow-up. RESULTS: Of 353 included patients, 257 (72.8%) completed the FeNOSuppT and 140 (54.5%) were positive. A positive FeNOSuppT was associated with greater improvements in short-term FEV1% (8.6% vs. -0.3, p<0.001) and ACQ6 (0.7 vs. 0.3, p=0.001) compared to a negative test. Of 168 patients eligible for biologics who completed the FeNOSuppT, those with a positive result initiated biologics less often (48.2% vs. 65.2%, p=0.035). Despite this, there was a greater improvement in FEV1 (11.0% vs. 2.3%, p=0.016), and a similar reduction in both asthma symptoms (ACQ6: 0.7 vs. 0.8, p=0.623) and exacerbations (66.7% vs. 66.7%, p=0.349) at long-term follow-up when compared to those with a negative FeNOSuppT. CONCLUSIONS: Delivering FeNOSuppT aligned with digital monitoring is feasible within routine care. A positive FeNOSuppT was associated with lower rates of biologic initiation, with similar clinical outcomes.
Recognition and management of acute functional decline in older people living in care homes: a qualitative interview study with UK care home staff.
BACKGROUND: Older people living in care homes who experience acute functional decline pose a diagnostic challenge to GPs. AIM: We aimed to explore beliefs, practices and experiences of UK care home staff who first recognise and respond to acute functional decline, including in the context of the COVID-19 pandemic. DESIGN & SETTING: Qualitative interview study with 25 UK care home staff. METHOD: Semi- structured interviews were conducted over the phone between January 2021 and April 2022. Thematic analysis was facilitated by NVivo software. RESULTS: Care home staff recognised acute functional decline as subtle changes from normal, which required knowing a resident well. However, it could be difficult to differentiate between an 'off day' and a more significant deviation, particularly for residents with a variable baseline. Acute functional decline caused anxiety to care home staff, in part due the uncertainty about illness trajectory and outcome. They commonly considered UTI a likely underlying cause. Some participants described a watch and wait approach or trying simple interventions, whilst others preferred escalating directly to outside clinical support. Triggers for escalation included perceived severity of illness, gut feeling or failure to respond to initial supportive management. CONCLUSION: This study has highlighted the complexities around the identification and management of a care home resident experiencing acute functional decline. There was variation in interpretation and responding to these episodes within the care home. More work is needed to understand the physiology and risk profiles of acute functional decline, as well as any relationship to UTI.
Variations in the Use of Faecal Immunochemical Testing (FIT) in Primary Care in England: A Population-Based Cohort of 531,735 FITs from 495,121 Patients Between 2019 and 2023.
BACKGROUND/OBJECTIVES: Faecal Immunochemical Testing (FIT) is recommended for patients presenting to primary care with symptoms suggestive of colorectal cancer. This study quantified variations in use across England. METHODS: Retrospective cohort of English patients (≥18 years) with a FIT result reported in routinely collected primary care records, 2019-2023. Rates of FIT testing by age, sex, year and region were adjusted using Poisson regression. Multivariate logistic regression compared the effect of factors on the proportion of results exceeding the recommended referral threshold (10µgHb/g). RESULTS: Between 01/01/2019 and 05/06/2023 there were 531,735 FIT results among 495,121 patients. Rates of testing increased from 0.69 per thousand person-years in 2019 (95% CI 0.68-0.71) to 27.70 in 2023 (95% CI 27.56-27.85). There were large variations in testing between regions, with rates >3-fold higher in the Northeast than the West Midlands: 17.05 (95% CI 16.87-17.23) versus 4.72 (95% CI 4.67-4.76) per thousand person-years. About 20.4% of FIT results were ≥10µgHb/g. Despite increased testing, this did not change over time. The proportion of FIT ≥10µgHb/g was lower in regions with higher rates of testing, from 16.7% (Southwest) to 25.3% (Southeast; rates of testing 14.62 and 8.00 per thousand person-years respectively). This difference in proportion of FIT ≥10µgHb/g persisted after adjusting for year, sex and age (OR 0.57, 95% CI 0.55-0.58). CONCLUSION: Rapid increases in FIT testing in primary care show large, persistent variations between English regions, which correlate with the proportion of results meeting the criteria for onward referral. Differences in the population tested and FIT's implementation between regions are likely to explain these variations.