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We investigated the relationship between strong-ties versus weak-ties rationality and public stigma (PS) during the COVID-19 pandemic. We also explored the cultural group differences (Malaysians vs. Australians) in this relationship. An online survey was conducted in 2021 with a final sample of 830 eligible Malaysians and 394 eligible Australians. Participants completed the multidimensional strong-ties weak-ties rationality Scale (STWTRS) and an adapted public stigma (PS) scale towards COVID-19 patients. Through multiple regression analysis, we found that the strong-ties rationality, ST-Authoritarian rationality, was positively associated with PS-Blame in both countries. However, the variable Country moderated the relationship between ST-Communal and PS-Rejection, with a negative association found in Malaysia and a positive association in Australia. The findings confirmed the strong-ties weak-ties rationality framework, where ST rationality, especially ST-Authoritarian, could explain the cognitive mechanism behind negative attitudes towards those who pose threat towards the in-group survival. However, ST-Communal could buffer the rejection towards the COVID-19 patients in Malaysia due to its emphasis on social harmony. This study can inform future interventions aimed at mitigating stigma and promoting a more inclusive and supportive society in times of crisis.
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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 behalf of the research team by Activity Providers (APs) already working within the care homes. This paper provides an account of how PPIE with care home residents can be achieved. METHODS: An exploratory design was used to see if it was possible to support "in-house" PPIE, with researchers working at a distance in partnership with care home staff. The National Activity Providers Association recruited five APs working in care homes. A series of optional discussion or activity sessions were developed by the research team in partnership with APs, tailored to reflect the research topics of interest and to make sessions accessible to residents with differing needs. RESULTS: APs facilitated four rounds of PPIE with up to 56 residents per topic, including individuals living with cognitive and communication impairments. Topics discussed included residents' views on data use, measuring quality of life and the prioritisation of care-related data for study collection. Feedback from the residents was observed to have unexpected and positive changes to participating care homes' practice. APs valued participation and working with researchers. They identified acquisition of new skills and insights into residents' thoughts and preferences as direct benefits. Challenges included time pressures on APs and managing emotive feedback. APs were able to approach residents at times convenient to them and in ways that best suited their individual needs. PPIE with residents provided different perspectives, particularly with respect to the importance of different types of data, and constructive challenge about some of the research team's assumptions. CONCLUSIONS: PPIE with APs as research partners is a promising approach to working in an inclusive and participatory way with care home residents. The voices of older care home residents, including those living with cognitive or communicative impairments, are important for the successful and meaningful completion of research.
In recent years there has been increasing interest in research relating to care homes. It is relatively rare that care home residents are given the chance to influence this research; often, family members or care home staff are asked to speak on their behalf. Research can influence residents' future care, and it is important to find ways of involving residents in research that are meaningful and enjoyable. This research paper discusses a new approach to involving care home residents in research. It begins by recounting how the approach came about, then covers how well it has worked so far, finally reflecting on the benefits and challenges of working in a new way. The researchers originally planned to go into care homes themselves to speak to residents, but with the onset of the Covid-19 pandemic this was no longer possible. Instead, Activity Providers already working in care homes were recruited via the National Activity Providers Association (NAPA) to help. They used activities and discussion prompts developed with the research team to speak to residents about the study. The research team hoped to make getting involved in research meaningful and interesting for residents. The team also wanted to make sure that as many people as possible living with conditions like dementia could get involved too. Comments and suggestions from residents were fed back to the research team to help them make decisions about how the research should be done.
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BACKGROUND: Influenza (flu) vaccination rates in UK care home staff are extremely low. Less than 40% of staff in care homes are vaccinated for influenza (flu), presenting risks to the health of frail residents and potential staff absence from cross-infection. Staff often do not perceive a need for vaccination and are unaware they are entitled to free flu vaccination. The FluCare study, a cluster randomised control trial (RCT), uses behavioural interventions to address barriers. Videos, posters, and leaflets are intended to raise awareness of flu vaccination benefits and debunk myths. On-site staff vaccination clinics increase accessibility. Financial incentives to care homes for improved vaccination rates and regular monitoring influence the environment. This paper outlines the planned process evaluation which will describe the intervention's mechanisms of action, explain any changes in outcomes, identify local adaptations, and inform design of the implementation phase. METHODS/DESIGN: A mixed method process evaluation to inform the interpretation of trial findings. OBJECTIVES: ⢠Describe the intervention as delivered in terms of dose and fidelity, including adaptations and variations across care homes. ⢠Explore the effects of individual intervention components on primary outcomes. ⢠Investigate the mechanisms of impact. ⢠Describe the perceived effectiveness of relevant intervention components (including videos, leaflets, posters, and flu clinics) from participant perspectives (care home manager, care home staff, flu clinic providers). ⢠Describe the characteristics of care homes and participants to assess reach. A purposive sample of twenty care homes (ten in the intervention arm, ten in the control arm) for inclusion in the process evaluation. Data will include (1) study records including care home site profiles, (2) responses to a mechanism of action questionnaire, and (3) semi-structured interviews with care home staff and clinic providers. Quantitative data will be descriptively reported. Interview data will be thematically analysed and then categories mapped to the Theoretical Domains Framework. DISCUSSION: Adopting this systematic and comprehensive process evaluation approach will help ensure data is captured on all aspects of the trial, enabling a full understanding of the intervention implementation and RCT findings. TRIAL REGISTRATION: ISRCTN ISRCTN22729870. Registered on 24 August 2022.
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Gripe Humana , Humanos , Análisis Costo-Beneficio , Gripe Humana/prevención & control , Instituciones de Atención Ambulatoria , Terapia Conductista , Vacunación , Ensayos Clínicos Controlados Aleatorios como AsuntoRESUMEN
BACKGROUND: In Malaysia approximately 7% of births result in a preterm birth (< 37 weeks). Research in many other countries has found that mothers of preterm infants experience poorer psychological wellbeing. However, there has been limited research in Malaysia. We examined wellbeing, using the WHO Quality of Life brief version questionnaire (WHOQOL-BREF), in mothers who have preterm and full-term infants. METHODS: Data was collected as part of the South East Asian Community Observatory MISS-P project. A total of 3221 mothers (7.9% with a preterm and 92.1 with a full-term birth) completed a survey, with a range of measures, including the WHOQoL-BREF and sociodemographic questions. RESULTS: For the physical health, psychological wellbeing and quality of their environment WHOQOL-BREF domains, a lower gestational age, a lower education level, and having had an emergency caesarean delivery were significantly associated (p < 0.05) with a lower quality of life, and there was a weak effect for ethnicity for some domains. The effects were strongest for mothers' education level. CONCLUSIONS: There is a weak but significant relationship between the gestational age of an infant and the mother's quality of life. Mothers in Malaysia with a preterm infant or a lower level of education may benefit from additional support.
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Recien Nacido Prematuro , Nacimiento Prematuro , Lactante , Femenino , Embarazo , Recién Nacido , Humanos , Recien Nacido Prematuro/psicología , Madres/psicología , Calidad de Vida , Nacimiento Prematuro/epidemiología , PartoRESUMEN
BACKGROUND: Patient-centered care (PCC) is the prevailing model of care globally. However, most research on PCC has been conducted in Westernized countries or has focused on only two facets of PCC: decision-making and information exchange. Our study examined how culture influences patients' preferences for five facets of PCC, including communication, decision-making, empathy, individualized focus, and relationship. METHODS: Participants (N = 2071) from Hong Kong, the Philippines, Australia, and the U.S.A. completed an online survey assessing their preferences for exchange of information, autonomy in decision-making, expression and validation of their emotions, focus on them as an individual, and the doctor-patient relationship. RESULTS: Participants from all four countries had similar preferences for empathy and shared decision-making. For other facets of PCC, participants in the Philippines and Australia expressed somewhat similar preferences, as did those in the U.S.A. and Hong Kong, challenging East-West stereotypes. Participants in the Philippines placed greater value on relationships, whereas Australians valued more autonomy. Participants in Hong Kong more commonly preferred doctor-directed care, with less importance placed on the relationship. Responses from U.S.A. participants were surprising, as they ranked the need for individualized care and two-way flow of information as least important. CONCLUSIONS: Empathy, information exchange, and shared decision-making are values shared across countries, while preferences for how the information is shared, and the importance of the doctor-patient relationship differ.
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Prioridad del Paciente , Relaciones Médico-Paciente , Humanos , Prioridad del Paciente/psicología , Toma de Decisiones , Australia , Atención Dirigida al PacienteRESUMEN
Both public stigma and perceived self-stigma are prevalent during pandemics threatening a divide among the global community. This systematic review examined the cultural factors associated with viral respiratory-related pandemic stigma. Following PRISMA guidelines, the keywords, "culture, stigma, and pandemic" were searched across relevant databases for empirical papers between January 2000 to March 2022. Quality assessment and coding were adopted in the screening process. Thirty-one articles were included in the final analysis. Themes revealed that collectivistic values, cultural identities, and non-western regions were associated with public (others) stigma; mismatch of cultural values, minority groups, and North America, Asia, Oceania, and African regions were associated with higher perceived and self-stigma. We further mapped the themes into a proposed systemic cultural stigma model to integrate the dynamic intersection of cultural values, identity, and ecology. The cultural factors and their influence on stigma were then explained by drawing on two evolutionary theories: Cultural rationality theory and scapegoating theory. Lastly, we proposed culturally sensitive and responsive practices for stigma management at the community level, especially in non-Western regions during the pandemic recovery phase.
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BACKGROUND: Offering cessation support to health professionals who smoke to ensure optimal implementation of cessation support for patients is a key recommendation of the WHO Framework Convention on Tobacco Control Article 14 guidelines. However, direct efforts to support this population to quit are limited. Although numerous articles on the topic of tobacco use among health professionals have been published, the factors associated with their own cessation have not been systematically synthesised. OBJECTIVE: We sought to synthesise existing literature on the predictors and processes informing attitudes and beliefs of smoking health professionals' own cessation. METHODS: A five-step methodological framework for scoping reviews was followed. We conducted a systematic search of EMBASE, PubMed, Web of Science, and PsycINFO databases, as well as Google Scholar for relevant articles. Titles, abstracts, and full texts were screened against predefined criteria: research published between 1990 and 2021, in English-language peer-reviewed journals; participants included doctors, nurses, medical, and student nurses who smoke. RESULTS: The initial search yielded 120, 883 articles, with 27 selected for synthesis. Prevalence estimates and predictors of smoking behaviour have remained the primary focus of smoking health professional research. Few studies explicitly examined the relevant predictors of quit attempts and quit attempt success. There is evidence that age and work environment factors predict quit attempt success in some health professional groups. There is also some evidence of tobacco smoking stigma experiences among nurses and nursing students who smoke. CONCLUSION: Although cessation support is desperately needed for health professionals who smoke, the evidence for factors predicting quit success remains limited. To better guide future research, first, more theoretical work is required to identify the relevant predictors. Second, these should be tested using prospective research designs that take a multi-focal perspective to clarify the targets for change.
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Médicos , Cese del Hábito de Fumar , Humanos , Estudios Prospectivos , Personal de Salud , Fumar/epidemiologíaRESUMEN
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.
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Hogares para Ancianos , Internacionalidad , Evaluación de Resultado en la Atención de Salud , Investigación , Anciano , Humanos , Práctica Clínica Basada en la Evidencia , Conjuntos de Datos como Asunto , Proyectos de InvestigaciónRESUMEN
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 ANALYSIS: A mixed-methods longitudinal pilot study will be conducted in 60 care homes (approximately 960 residents) in 3 regions of England, using resident data from cloud-based digital care home records at two-time points. These will be linked to resident and care home level data held within routine National Health Service and social care data sets. Two rounds of focus groups with care home staff (n=8-10 per region) and additional interviews with external stakeholders (n=3 per region) will explore implementation and the perceived utility of the MDS. Data will be assessed for completeness and timeliness of completion. Descriptive statistics, including percentage floor and ceiling effects, will establish data quality. For validated scales, construct validity will be assessed by hypothesis testing and exploratory factor analysis will establish structural validity. Internal consistency will be established using Cronbach's alpha. Longitudinal analysis of the pilot data will demonstrate the value of the MDS to each region. Qualitative data will be analysed inductively using thematic analysis to understand the complexities of implementing an MDS in care homes for older people. ETHICS AND DISSEMINATION: The study has received ethical approval from the London Queen's Square Research Ethics Committee (22/LO/0250). Informed consent is required for participation. Findings will be disseminated to: academics working on data use and integration in social care, care sector organisations, policy makers and commissioners. Findings will be published in peer-reviewed journals. Partner NIHR Applied Research Collaborations, the National Care Forum and the British Geriatrics Society will disseminate policy briefs.
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Proyectos de Investigación , Medicina Estatal , Humanos , Anciano , Proyectos Piloto , Inglaterra , LondresRESUMEN
Inadequate consideration has been given to patient preferences for patient-centered care (PCC) across countries or cultures in our increasingly global society. We examined what 1,698 participants from the United States, Hong Kong, Philippines, and Australia described as important when making health care decisions. Analysis of frequencies following directed content coding of open-ended questions revealed differences in patients' preferences for doctor behaviors and decision-making considerations across countries. Being well informed by their doctor emerged as most important in decision-making, especially in Hong Kong. Participants in Australia and the United States wanted their doctor to meet their emotional needs. The safety and efficacy of treatments were the most common consideration, especially for Hong Kong. Findings suggest that doctors should focus on information exchange and identifying patient concerns about efficacy, lifestyle impact, cost, and recovery speed. Rather than assuming patients prefer shared decision-making, doctors must assess patient's decision control preferences.
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Prioridad del Paciente , Médicos , Humanos , Estados Unidos , Prioridad del Paciente/psicología , Toma de Decisiones , Atención Dirigida al Paciente , Participación del Paciente , Relaciones Médico-PacienteRESUMEN
The care home staff influenza vaccination rate in England is significantly lower than the 75% World Health Organisation recommendation. This represents a substantial potential for resident harm. Barriers to staff vaccination stem from individual and organisational levels. Existing interventions address some but not all barriers and are not underpinned by behavioural science theory. This study aims to estimate the effectiveness and cost-effectiveness of a theory-informed intervention to improve care home staff vaccination rates compared to routine practice.Set in care homes with both nursing and residential focus, and a range of ownership status, only homes providing long stay care to older people with a staff vaccination rate below 40% are eligible to participate. Participation expressions of interest will be sought using a variety of approaches prior to seeking consent.The primary outcome measure is the proportion of staff vaccinated at 6 months, with secondary outcome measures being proportion vaccinated at 3 months, numbers of staff sick days, general practitioner and nurse visits to care home, care home resident hospitalisations and mortality.Based on the assumptions that the mean cluster (care home) size is 54 staff, a coefficient of variation of 0.48, control vaccination rate is 55%, intervention 75%, intra-cluster correlation coefficient of 0.2 and with 90% power, and 20% attrition, we require 39 care homes per arm.Blocked randomisation will be at the level of care home, stratified by the proportion of non-white care home staff, and implemented by Norwich Clinical Trials Unit.The intervention comprises co-designed information videos and posters, provision of in-house staff vaccination clinics, and incentive scheme and monthly data collection on trial outcomes. Beyond usual practice, the control arm will additionally contribute monthly data.Data will be collected at the start, monthly and at 6 months, and analysis will be blind to allocation. Statistical analysis will use the intention-to-treat principle with the difference in vaccination rates between groups compared using a random effect logistic regression model at the staff-level.This will be the first study to use a theory-informed intervention designed to comprehensively address identified barriers to care home staff influenza vaccination.Trial registration: ISRCTN ISRCTN22729870 . Registered on 24 August 22. Secondary identifiers: R209939, IRAS 316820, CPMS 53812.
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Gripe Humana , Humanos , Anciano , Análisis Costo-Beneficio , Gripe Humana/prevención & control , Vacunación , Hospitalización , Protocolos Clínicos , Ensayos Clínicos Controlados Aleatorios como AsuntoRESUMEN
BACKGROUND: Cancer and dementia are common in older people and management of the conditions as comorbidities can be challenging, yet little is known about the size or characteristics of this group. We aimed to estimate the prevalence, characteristics and general practice resource usage of people living with both conditions in England. METHODS: Anonymised electronic healthcare records from 391 National Health Service general practices across England using the TPP SystmOne general practice system were obtained from ResearchOne. Data included demographic and clinical characteristics, and general practice healthcare useage (appointments, prescriptions, referrals and secondary care contacts) for people aged 50 and over with a cancer and/or dementia diagnosis consistent with the Quality and Outcomes Framework between 2005 and 2016. Multi-level negative binomial regression was used to analyse the association between having cancer and/or dementia and the number of general practice appointments. RESULTS: Data from 162,371 people with cancer and/or dementia were analysed; 3616 (2.2%) people were identified as having comorbid cancer and dementia. Of people with cancer, 3.1% also had dementia, rising to 7.5% (1 in 13 people) in those aged 75 and over. Fewer people with both conditions were female (50.7%) compared to those with dementia alone (65.6%) and those with comorbid cancer and dementia were older than those with cancer alone [mean ages 83 (sd = 7), 69 (sd = 12) respectively]. Those with both conditions were less likely to have lung cancer than those with cancer alone (7.5% vs. 10.3%) but more likely to have prostate cancer (20.9% vs. 15.8%). Additional comorbidities were more prevalent for those with both conditions than those with cancer or dementia alone (68.4% vs. 50.2% vs. 54.0%). In the year following the first record of either condition, people with cancer and dementia had 9% more general practice appointments (IRR:1.09, 95% CI:1.01-1.17) than those with cancer alone and 37% more appointments than those with dementia alone (IRR: 1.37, 95% CI: 1.28-1.47). CONCLUSIONS: A significant number of people are living with comorbid cancer and dementia in England. This group have additional comorbidity and higher general practice usage than those with cancer/dementia alone. The needs of this group should be considered in future general practice care planning and research.
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Demencia , Medicina General , Neoplasias , Masculino , Humanos , Femenino , Persona de Mediana Edad , Anciano , Anciano de 80 o más Años , Estudios Transversales , Estudios Retrospectivos , Demencia/epidemiología , Medicina Estatal , Comorbilidad , Inglaterra/epidemiología , Neoplasias/epidemiologíaRESUMEN
COVID-19 had a devastating impact on older people living in care homes. This study explored the clinical trajectory and management of COVID-19, as well as recovery of older people following infection during the early stages of the pandemic (May to August 2020). A two-phase exploratory qualitative study was used. Frontline staff with experience of caring for older people with COVID-19 were recruited to Phase 1, and senior care home operational and quality managers were recruited to Phase 2. During Phase 1 remote semi-structured interviews (n = 35) were carried out with staff working in care homes, hospital and community settings in England. During Phase 2, a remote consultation event was carried out with senior care home operational and quality managers (n = 11) to share Phase 1 findings and check resonance, relevance and gaps. Data were analysed using Framework Analysis. Older people with COVID-19 presented with wide ranging symptoms, and an unpredictable illness trajectory. The wide range of COVID-19 symptoms required timely testing and supportive interventions. Staff used different interventions to manage symptoms and reported uncertainties of how individuals would respond. In care home settings, health and social care staff needed to work together when administering interventions such as subcutaneous fluids or oxygen therapy. Alongside symptom management, supportive care focused on nutrition and hydration, social interaction, and maintaining physical activity to meet both physical and emotional needs. The effects of prolonged periods of social isolation and inactivity on the health and well-being of older people means rehabilitation is essential to enhance physical and emotional recovery, and to minimise impacts on cognition and function. The pandemic highlighted important areas for care of this population.
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COVID-19 , Humanos , Anciano , COVID-19/terapia , Casas de Salud , Pandemias , Aislamiento Social , Investigación CualitativaRESUMEN
Many lawyers experience regular exposure to traumatic material yet little is known about its effects. This study examines what traumatic material affects lawyers, how they respond in the moment and how they recover. The participants (n = 18 lawyers) completed a five-day diary study and a semi-structured interview regarding their experiences. The analysis identified clients' negative emotions and experiences, domestic violence and child abuse as most impactful. The participants reported experiencing sadness, anger, frustration, disgust and/or compassion; some reported not being overly distressed or not experiencing emotions. Most participants reported using social support and emotion-focused coping strategies, drawing on their identities as lawyers to suppress or conceal emotions. At the end of a working day many participants reported coping by working longer hours but also through physical activity and social interactions. We discuss the implications for lawyers' well-being and the role of organisations and education in managing the impacts of traumatic material.
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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 decades. Modern care homes provide care for people who are predominantly over 80, have multiple long-term conditions, take multiple medicines, are physically dependent and live with cognitive impairment. Residents do better when services recognise the contributions of staff and care home providers rather than treating residents as individual patients living in a communal setting. There is a strong case given residents' frailty, multimorbidity and disability, that care should be structured around Comprehensive Geriatric Assessment (CGA). Care should be designed to allow opportunities for multiprofessional teams to come together for CGA, particularly if healthcare professionals are based outside care homes. Good data about care homes and residents are central to efforts to deliver high quality care-in some countries, these data are collected but not collated. Collating such data is a priority. Care home staff are under-recognised and underpaid-parity of pay and opportunity with NHS staff is the bare minimum to ensure that the best are recruited and retained in the sector. During the COVID-19 pandemic, residents and relatives have frequently been left out of decisions about policies that affect them, and better consultation is needed to deliver high quality care.
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COVID-19 , Fragilidad , Anciano , COVID-19/epidemiología , Evaluación Geriátrica , Humanos , Casas de Salud , PandemiasRESUMEN
BACKGROUND: There remains a need to engage at-risk primary care populations in cancer prevention behaviors, yet primary care physicians often lack the time or resources to discuss these behaviors with their patients. OBJECTIVE: The objective of this study is to evaluate the content, usability, and acceptability of a mobile app that leverages insights from goal-setting and social network literature to facilitate cancer prevention goal setting, tracking, and sharing between non-Hispanic Black primary care patients and their social ties. METHODS: We recruited eligible non-Hispanic Black primary care patients (aged ≥18 years) from 2 practice sites in West Philadelphia, using nonprobabilistic purposive sampling. We conducted semistructured interviews with 5 to 7 participants over 3 weeks to solicit feedback on paper mock-ups of the app, iteratively adapting these mock-ups after each set of interviews. Thereafter, and informed by initial feedback, we created an electronic beta version of the app and sought acceptability and usability feedback from a different set of participants. Then, we conducted content analysis of all user responses to search for unifying themes on acceptability and usability of both the initial mock-ups and beta version of the app. We further assessed app usability using questions derived from the System Usability Scale. RESULTS: A total of 33 non-Hispanic Black primary care patients participated in this study. The mean age was 49 (SD 13) years, and 26 (79%) out of 33 participants identified as female. Semistructured interviews revealed three primary generalizable insights from our target population: the framing of each goal and its relevance to cancer impacted the likelihood that the goal would be chosen, participants thought that sharing health goals with others facilitates health behaviors, and most participants found it motivating to see other users' goal progress, while still collaborating with these users on their health goals. An overarching insight that permeated across each theme was the participants' desire to customize and personalize the app. Usability testing revealed that 100% (33/33) of participants found the app easy to use, and 76% (25/33) of participants reported that they would like to use this app frequently. CONCLUSIONS: Cancer prevention in the modern era must include options that are accessible to all, but this does not mean that all options must be universal. This study's iterative process led to the development of a cancer prevention mobile app that non-Hispanic Black primary care patients deemed usable and acceptable and yielded noteworthy insights about what intended end users value in setting and accomplishing health goals.
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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.
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COVID-19 , Casas de Salud , Anciano , Humanos , Pandemias , Calidad de Vida , Reino UnidoRESUMEN
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 review residents' everyday care. The review aimed to develop a theory-driven understanding of how care home staff can effectively implement and use MDS to plan and deliver care for residents. METHODS: The realist review was organised according to RAMESES (Realist And Meta-narrative Evidence Synthesis: and Evolving Standards) guidelines. There were three overlapping stages: 1) defining the scope of the review and theory development on the use of minimum data set 2) testing and refining candidate programme theories through iterative literature searches and stakeholders' consultations as well as discussion among the research team; and 3) data synthesis from stages 1 and 2. The following databases were used MEDLINE via OVID, Embase, CINAHL (Cumulative Index to Nursing and Allied Health Literature), ASSIA [Applied Social Sciences Citation Index and Abstracts]) and sources of grey literature. RESULTS: Fifty-one papers informed the development of three key interlinked theoretical propositions: motivation (mandates and incentives for Minimum Data Set completion); frontline staff monitoring (when Minimum Data Set completion is built into the working practices of the care home); and embedded recording systems (Minimum Data Set recording system is integral to collecting residents' data). By valuing the contributions of staff and building on existing ways of working, the uptake and use of an MDS could enable all staff to learn with and from each other about what is important for residents' care CONCLUSIONS: Minimum Data Sets provides commissioners service providers and researchers with standardised information useful for commissioning planning and analysis. For it to be equally useful for care home staff it requires key activities that address the staff experiences of care, their work with others and the use of digital technology. REGISTRATION: PROSPERO registration number CRD42020171323.
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Cuidados a Largo Plazo , Motivación , Anciano , HumanosRESUMEN
OBJECTIVE: A robust physician-patient relationship has been linked to better health outcomes for a range of chronic conditions. Our study aimed to identify physician behaviors patients consider contribute to good physician-patient relationships. METHOD: Fifty patients with a chronic condition and a self-reported good physician-patient relationship were interviewed using the Critical Incidents technique and asked to describe observable behaviors that contributed to their good physician-patient relationship. A sub-sample of 30 participants rated the importance of each behavior and sorted them into self-labelled, mutually exclusive, and conceptually homogenous categories. Multivariate concept mapping with hierarchal cluster analysis was performed. RESULTS: Patients reported 65 behaviors, which were grouped into six overarching domains: valuing the whole person, investigation and future planning, collaboration and empowerment, validation and emotional support, politeness and courtesy, and professionalism. CONCLUSION: Results indicate patients with chronic conditions have a broader conceptualization and identified additional behaviors that reflect components of the physician-patient relationship than has been identified in researcher and practitioner based models. PRACTICE IMPLICATIONS: Practitioners could utilize these concrete behaviors when forming relationships with their patients. These behaviors could also be incorporated into a tool designed to teach and assess the physician-patient relationship.
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Relaciones Médico-Paciente , Médicos , Enfermedad Crónica , HumanosRESUMEN
BACKGROUND: Many newly diagnosed cancers are associated with modifiable lifestyle behaviors, such as diet, exercise, smoking cessation, and maintaining a healthy weight. However, primary care providers rarely discuss cancer prevention behaviors with their patients. OBJECTIVE: This study aims to assess the usability, acceptability, and user engagement of the Healthier Together mobile app, which is designed to promote cancer prevention behaviors among non-Hispanic Black primary care patients, by using social networks and goal-setting theories of behavior change. METHODS: In an 8-week pilot study, we enrolled primary care patients (N=41) and provided them with a cancer prevention mobile app that allowed them to select, track, and share progress on cancer prevention goals with other users. App usability was assessed using the System Usability Scale. We assessed the app's acceptability by qualitatively analyzing open-ended responses regarding participants' overall experience with the app. We assessed participants' engagement by analyzing the built-in data capture device, which included the number of times participants checked in (out of a maximum of 8) during the study. RESULTS: The mean age of the 41 participants was 51 years (SD 12), and 76% (31/41) were women. App use data were captured from all participants, and 83% (34/41) completed the exit survey and interview. The mean System Usability Scale score was 87 (SD 12; median 90; IQR 78-95). The analysis of open-ended responses revealed several key themes, and participants complemented the app's ease of use and health behavior-promoting features while also commenting on the need for more feedback and social interactions through the app. On average, participants checked in 5.7 times (SD 2.7) out of 8 possible opportunities. Of the 41 participants, 76% (31/41) checked in during at least 4 of the 8 weeks. Secondary analyses revealed that participants often accomplished their set goals (mean 5.1, SD 2.7) for each week. The qualitative analysis of comments given by participants within the app after each weekly check-in revealed several themes on how the app assisted participants in behavioral change, highlighting that some participants created exercise programs, ate healthier foods, lost a significant amount of weight, and stopped smoking during this study. CONCLUSIONS: The implementation of a mobile cancer prevention goal-setting app in a primary care setting was feasible, and the app achieved high usability, acceptability, and engagement among participants. User feedback revealed an influence on health behaviors. These findings suggest the promise of the Healthier Together app in facilitating behavioral change to reduce cancer risk among non-Hispanic Black primary care patients.