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There is a growing evidence base that identifying positive experiences in providing care can have a beneficial influence on carer wellbeing. However, there is a need to better understand what carers identify as the positive aspects of care-giving. The aim of this study is to explore the satisfying aspects of providing care to people with dementia. This study utilised Time 1 data from 1,277 carers of people in the mild-to-moderate stages of dementia taking part in the IDEAL (Improving the experience of Dementia and Enhancing Active Life) cohort study. Responses from 900 carers who answered the open-ended question ‘What is your greatest satisfaction in caring for your relative/friend?’ were analysed using thematic analysis. From the responses, 839 carers detailed satisfactions. Eight themes were identified, pertaining to three groups of beneficiaries: carers, people with dementia and the dyad. Perceived benefits for carers included identifying aspects of personal growth, seeing glimpses of the person, feeling they were making a difference and doing their duty. For the person with dementia, these included retaining independence, receiving good quality care and being happy. Dyadic benefits concerned the continuation of the relationship between carer and person with dementia. The findings highlight the need to take a dyadic approach when conceptualising positive experiences in providing care. Further research is needed to understand the role these positive experiences play and to develop interventions. Professionals working with carers should identify and validate these experiences.
Stringent social restrictions imposed during 2020 to counter the spread of the COVID-19 pandemic could significantly affect the wellbeing and quality of life of people with dementia living in the community and their family carers. We explored the impact of COVID-19 restrictions on people with dementia and family carers in England and considered how negative effects might be mitigated. We conducted semi-structured telephone interviews with 11 people with dementia and 11 family carers who were ongoing participants in the IDEAL cohort during the initial ‘lockdown’ period in May and June 2020, and follow-up interviews with five people with dementia and two carers as restrictions were eased in July. We analysed interview data and triangulated the findings with issues raised in dementia-specific online forums. Findings showed some people with dementia were coping well, but others experienced a range of negative impacts, with varying degrees of improvement as restrictions were eased. The need for clear personalised information relating to COVID-19 and the value of support in the form of regular ‘just checking’ phone calls was emphasised. This exceptional situation provides a natural demonstration of how social and psychological resources shape the potential to ‘live well’ with dementia. While some support is recommended for all, a personalised approach to determine needs and coping ability would ensure that further practical and emotional support is targeted effectively.
Major depressive disorder (MDD) is associated with increased allostatic load (AL; a measure of physiological costs of repeated/chronic stress-responding) and metabolic dysregulation (MetD; a measure of metabolic health and precursor to many medical illnesses). Though AL and MetD are associated with poor somatic health outcomes, little is known regarding their relationship with antidepressant-treatment outcomes.
We determined pre-treatment AL and MetD in 67 healthy controls and 34 unmedicated, medically healthy MDD subjects. Following this, MDD subjects completed 8-weeks of open-label selective serotonin reuptake inhibitor (SSRI) antidepressant treatment and were categorized as ‘Responders’ (⩾50% improvement in depression severity ratings) or ‘Non-responders’ (<50% improvement). Logistic and linear regressions were performed to determine if pre-treatment AL or MetD scores predicted SSRI-response. Secondary analyses examined cross-sectional differences between MDD and control groups.
Pre-treatment AL and MetD scores significantly predicted continuous antidepressant response (i.e. absolute decreases in depression severity ratings) (p = 0.012 and 0.014, respectively), as well as post-treatment status as a Responder or Non-responder (p = 0.022 and 0.040, respectively), such that higher pre-treatment AL and MetD were associated with poorer SSRI-treatment outcomes. Pre-treatment AL and MetD of Responders were similar to Controls, while those of Non-responders were significantly higher than both Responders (p = 0.025 and 0.033, respectively) and Controls (p = 0.039 and 0.001, respectively).
These preliminary findings suggest that indices of metabolic and hypothalamic-pituitary-adrenal-axis dysregulation are associated with poorer SSRI-treatment response. To our knowledge, this is the first study to demonstrate that these markers of medical disease risk also predict poorer antidepressant outcomes.
Short-term survival after paediatric cardiac surgery has improved significantly over the past 20 years and increasing attention is being given to measuring and reducing incidence of morbidities following surgery. How to best use routinely collected data to share morbidity information constitutes a challenge for clinical teams interested in analysing their outcomes for quality improvement. We aimed to develop a tool facilitating this process in the context of monitoring morbidities following paediatric cardiac surgery, as part of a prospective multi-centre research study in the United Kingdom.
We developed a prototype software tool to analyse and present data about morbidities associated with cardiac surgery in children. We used an iterative process, involving engagement with potential users, tool design and implementation, and feedback collection. Graphical data displays were based on the use of icons and graphs designed in collaboration with clinicians.
Our tool enables automatic creation of graphical summaries, displayed as a Microsoft PowerPoint presentation, from a spreadsheet containing patient-level data about specified cardiac surgery morbidities. Data summaries include numbers/percentages of cases with morbidities reported, co-occurrences of different morbidities, and time series of each complication over a time window.
Our work was characterised by a very high level of interaction with potential users of the tool, enabling us to promptly account for feedback and suggestions from clinicians and data managers. The United Kingdom centres involved in the project received the tool positively, and several expressed their interest in using it as part of their routine practice.
Like other Western societies, the UK is undergoing important social and demographic changes, most notably the continued ‘ageing’ of the population and the increasing ethnic diversity of the older population. In the UK ethnicity is defined on the basis of self-identification from a standard list of categories included in routine administrative data collection, social surveys and the decennial census. This approach recognises that ethnicity is a multidimensional concept that embraces a constellation of characteristics including country of birth, skin colour, language(s) spoken, nationality, culture and religion, and which represents an individual/group identity that is grounded in shared origins or social background; shared culture and traditions that are distinctive and maintained between generations; and a common language and/or religious tradition. Fundamental to the concept of ethnicity is that it represents an individual's self-assessment of their status and, consequently, may change over time and is not externally attributed or imposed by others. In terms of diversity, the 2011 Census data report that 16 per cent of the population of England and Wales self-define themselves as non-White compared with 5 per cent in 1991, with approximately 4 per cent self-defining as Black/African-Caribbean and 5 per cent as South Asian (2.5 per cent Indian, 2 per cent Pakistani and 0.8 per cent Bangladeshi).
These two demographic trends noted above intersect with the ageing of the communities of migrants who came to the UK from the Caribbean and India in the 1950s, from Pakistan in the 1970s, with the Bangladeshi group arriving in the late 1970s and early 1980s. For these groups migration was for a range of reasons including economic opportunities, family reunification or because of expulsion from their country of residence in the case of the Ugandan Asians. Eighteen per cent of the White population of England and Wales are aged over 65 compared with 14 per cent of the African Caribbean group, 8 per cent of the Indian community and 4 per cent each for the Pakistani and Bangladeshi populations (Lievesley, 2010). A key feature of these ageing members of our minority populations is that they are almost exclusively comprised of first-generation migrants (Herbert, 2008; Qureshi, 1988).
Current policy emphasises the importance of ‘living well’ with dementia, but there has been no comprehensive synthesis of the factors related to quality of life (QoL), subjective well-being or life satisfaction in people with dementia. We examined the available evidence in a systematic review and meta-analysis. We searched electronic databases until 7 January 2016 for observational studies investigating factors associated with QoL, well-being and life satisfaction in people with dementia. Articles had to provide quantitative data and include ⩾75% people with dementia of any type or severity. We included 198 QoL studies taken from 272 articles in the meta-analysis. The analysis focused on 43 factors with sufficient data, relating to 37639 people with dementia. Generally, these factors were significantly associated with QoL, but effect sizes were often small (0.1–0.29) or negligible (<0.09). Factors reflecting relationships, social engagement and functional ability were associated with better QoL. Factors indicative of poorer physical and mental health (including depression and other neuropsychiatric symptoms) and poorer carer well-being were associated with poorer QoL. Longitudinal evidence about predictors of QoL was limited. There was a considerable between-study heterogeneity. The pattern of numerous predominantly small associations with QoL suggests a need to reconsider approaches to understanding and assessing living well with dementia.
The relationship between living alone, loneliness and social isolation, and how they are associated with health remain contentious. We sought to explore typologies based on shared experiences of loneliness, social isolation and living alone using Latent Class Analysis and determine how these groups may differ in terms of their physical and mental health. We used Wave 7 of the English Longitudinal Study of Ageing (N = 7,032; mean age = 67.3) and responses to the University of California, Los Angeles (UCLA) loneliness scale, household composition, participation in social/societal activities plus frequency of contact with friends, family and relatives for the Latent Class Analysis. The optimal number of groups was identified using model-fit criteria. The socio-demographic characteristics of groups and health outcomes were explored using descriptive statistics and logistic regression. We identified a six-cluster typology: Group 1, no loneliness or isolation; Group 2, moderate loneliness; Group 3, living alone; Group 4, moderate isolation; Group 5, moderate loneliness, living alone; and Group 6, high loneliness, moderate isolation (with high likelihood of living alone). Groups experiencing loneliness and/or isolation were more likely to report poorer physical and mental health even after adjusting for socio-demographic confounders, this was particularly notable for Group 6. Our results indicate that different typologies of living alone, loneliness and isolation can be identified using data-driven techniques, and can be differentiated by the number and severity of issues they experience.
The objective of this study was to prospectively validate the “Brief Developmental Assessment”, which is a new early recognition tool for neurodevelopmental abnormalities in children with heart disease that was developed for use by cardiac teams.
This was a prospective validation study among a representative sample of 960 pre-school children with heart disease from three United Kingdom tertiary cardiac centres who were analysed grouped into five separate age bands.
The “Brief Developmental Assessment” was successfully validated in the older four age bands, but not in the youngest representing infants under the age of 4 months, as pre-set validation thresholds were met – lower 95% confidence limit for the correlation coefficient above 0.75 – in terms of agreement of scores between two raters and with an external measure the “Mullen Scales of Early Learning”. On the basis of American Association of Pediatrics Guidelines, which state that the sensitivity and specificity of a developmental screening tool should fall between 70 and 80%, “Brief Developmental Assessment” outcome of Red meets this threshold for detection of Mullen scores >2 standard deviations below the mean.
The “Brief Developmental Assessment” may be used to improve the quality of assessment of children with heart disease. This will require a training package for users and a guide to action for abnormal results. Further research is needed to determine how best to deploy the “Brief Developmental Assessment” at different time points in children with heart disease and to determine the management strategy in infants younger than 4 months old.
Most mid-life and older adults are not achieving recommended physical activity (PA) targets and effective interventions are needed to increase and maintain PA long-term for health benefits. The Pedometer And Consultation Evaluation (PACE-UP) trial, a three-armed primary care pedometer-based walking intervention in those aged 45–75 years, demonstrated increased PA levels at 12 months. A three-year follow-up was conducted to evaluate long-term PA maintenance, including a qualitative component.
To examine facilitators and barriers to PA maintenance in mid-life and older adults previously involved in a PA trial.
Semi-structured telephone interviews were conducted with 60 PACE-UP participants across all study arms. Interviews were audio-recorded, transcribed verbatim and coded independently by researchers, prior to thematic analysis.
Two-thirds of participants felt since the PACE-UP trial they had an awareness of PA, with the pedometer reported as ‘kick-starting’ regular activity, and then helped them to maintain regular activity. PA facilitators included: maintaining good health, self-motivation, social support and good weather. Lack of time was the most frequently cited barrier. Other barriers were often the inverse of the facilitators; for example, poor health and bad weather. Participants described the type of ‘top-up’ intervention they would find beneficial to aid PA maintenance (eg, text messages, online resources and walking groups).
A challenge for future PA interventions is to transform barriers into facilitators; for example, educating trial participants about the value of PA for many chronic health conditions to change this from inhibiting to promoting PA. Participants provided ideas for encouraging PA maintenance which could be incorporated into future interventions.
This article tests the fit of a social support network typology developed for collectivist cultures to six migrant populations living in England and Wales. We examine the predictive utility of the typology to identify networks most vulnerable to poor quality of life and loneliness. Variables representing network size, and the proportion of the network classified by gender, age, kin and proximity, were used in confirmatory and exploratory latent profile analysis to fit models to the data (N = 815; Black African, Black Caribbean, Indian, Pakistani, Bangladeshi and Chinese). Multinomial logistic regression examined associations between demographic variables and network types. Linear regression examined associations between network types and wellbeing outcomes. A four-profile model was selected. Multigenerational Household: Younger Family networks were most robust with lowest levels of loneliness and greatest quality of life. Restricted Non-kin networks were least robust. Multigenerational Household: Younger Family networks were most prevalent for all but the Black Caribbean migrants. The typology is able to differentiate between networks with multigenerational households and can help identify vulnerable networks. There are implications for forecasting formal services and variation in networks between cultures. The use of a culturally appropriate typology could impact on the credibility of gerontological research.
Morbidity is defined as a state of being unhealthy or of experiencing an aspect of health that is “generally bad for you”, and postoperative morbidity linked to paediatric cardiac surgery encompasses a range of conditions that may impact the patient and are potential targets for quality assurance.
As part of a wider study, a multi-disciplinary group of professionals aimed to define a list of morbidities linked to paediatric cardiac surgery that was prioritised by a panel reflecting the views of both professionals from a range of disciplines and settings as well as parents and patients.
We present a set of definitions of morbidity for use in routine audit after paediatric cardiac surgery. These morbidities are ranked in priority order as acute neurological event, unplanned re-operation, feeding problems, the need for renal support, major adverse cardiac events or never events, extracorporeal life support, necrotising enterocolitis, surgical site of blood stream infection, and prolonged pleural effusion or chylothorax. It is recognised that more than one such morbidity may arise in the same patient and these are referred to as multiple morbidities, except in the case of extracorporeal life support, which is a stand-alone constellation of morbidity.
It is feasible to define a range of paediatric cardiac surgical morbidities for use in routine audit that reflects the priorities of both professionals and parents. The impact of these morbidities on the patient and family will be explored prospectively as part of a wider ongoing, multi-centre study.
Objectives: The majority of patients in India access private sector providers for curative medical services. However, there is scanty information on the cost of treatment of critically ill patients in this setting. The study evaluates the cost and extent of financial subsidy required for patients admitted to an intensive care unit (ICU) in India.
Methods: Data on direct medical, direct nonmedical, and indirect cost were prospectively collected from critically ill patients admitted to a tertiary teaching hospital in India. Willingness-to-pay (WTP) amount was obtained from the next-of-kin following admission and the actual cost paid by the family at discharge was recorded.
Results: The main diagnoses (n = 499) were infection (26 percent) and poisoning (21 percent). The mean APACHE-II score was 13.9 (95 percent confidence interval [CI], 13.3–14.5); 86 percent were ventilated. ICU stay was 7.8 days (95 percent CI, 7.3–8.3). Hospital mortality was 27.9 percent. Direct medical cost accounted for 77 percent (US$ 2164) of the total treatment cost (US$ 2818). Indirect cost and direct nonmedical cost contributed to 19 percent (US$ 547.5) and 4 percent (US$ 106.5), respectively. Average total and daily ICU cost were US$ 1,897 and US$ 255, respectively. Although the family's WTP was 53 percent (US$ 1146; 95 percent CI, 1090–1204) of direct medical cost, their final contribution was 67.7 percent (US$ 1465; 95 percent CI, 1327–1604).
Conclusions: The cost of an ICU admission in our setting is US$ 2818. Although the family's contribution to expenses exceeded their initial WTP, a substantial subsidy (33 percent) is still required. Alternate financing strategies for the poor and optimization of ICU resources are urgently required.
The number of beds in care homes (with and without nurses) in the United Kingdom is three times greater than the number of beds in National Health Service (NHS) hospitals. Care homes are predominantly owned by a range of commercial, not-for-profit or charitable providers and their residents have high levels of disability, frailty and co-morbidity. NHS support for care home residents is very variable, and it is unclear what models of clinical support work and are cost-effective.
To critically evaluate how the NHS works with care homes.
A review of surveys of NHS services provided to care homes that had been completed since 2008. It included published national surveys, local surveys commissioned by Primary Care organisations, studies from charities and academic centres, grey literature identified across the nine government regions, and information from care home, primary care and other research networks. Data extraction captured forms of NHS service provision for care homes in England in terms of frequency, location, focus and purpose.
Five surveys focused primarily on general practitioner services, and 10 on specialist services to care home. Working relationships between the NHS and care homes lack structure and purpose and have generally evolved locally. There are wide variations in provision of both generalist and specialist healthcare services to care homes. Larger care home chains may take a systematic approach to both organising access to NHS generalist and specialist services, and to supplementing gaps with in-house provision. Access to dental care for care home residents appears to be particularly deficient.
Historical differences in innovation and provision of NHS services, the complexities of collaborating across different sectors (private and public, health and social care, general and mental health), and variable levels of organisation of care homes, all lead to persistent and embedded inequity in the distribution of NHS resources to this population. Clinical commissioners seeking to improve the quality of care of care home residents need to consider how best to provide fair access to health care for older people living in a care home, and to establish a specification for service delivery to this vulnerable population.
In recent years, there has been an increasing interest in researching ageing ethnic minority populations in the West. However, older people from such minority communities have received comparatively little attention in wide-ranging discussions on appropriate research methodologies. By a process of critically reflecting on our experiences of undertaking fieldwork for our Economic and Social Research Council New Dynamics of Ageing study of ‘Families and Caring in South Asian Communities', this paper maps out the key methodological and ethical challenges we faced and, in the process, highlights the importance of developing socially appropriate research methodologies and ethical frameworks for research with such populations. With a reflexive approach, we specifically explore the significance of gender, age, time and space to the fieldwork processes and the ‘field’ relationships formed at various stages of the research process. In particular, we explore three key emergent issues which conflicted with our formal research protocols and presented particular challenges for us and our older Pakistani Muslim participants: (a) structuring of time in daily life; (b) gendered use of public and private spaces; and (c) orality of informal social contexts and relationships. Using illustrations from our fieldwork which reveal the particular significance of these issues to our fieldwork experiences and performativities of public/private identities, we highlight important tensions between formalised ethical and methodological dimensions of conducting funded research and the realities of being in ‘the field’. We conclude the paper by emphasising the need to explore further not only the ways in which researchers can adopt more socially and culturally sensitive data collection processes and methodologies at the micro level of their interactions with research participants, but also contextualising the particular challenges experienced by researchers and their participants in terms of the wider research frameworks and agendas as well as the broader social contexts within which they live and work.
Extending participation and social connectivity is now widely accepted as central to adding life to years as well as healthy years to life, while participation in the life of the community is seen as critical to well-being (Sen, 1992, p 39), and capable of addressing older people's rights, extending inclusion, reducing exclusion, easing demand on national budgets and building social cohesion. The central conundrums of increasing participation and social connectivity are, first, the intermeshing of personal, local, meso and macro level factors in shaping participation and social connectivity, and second, how the drive towards increased participation can be included in framing policy in such a way that participation is individually meaningful, social connectivity is enhanced and benefits flow to participants and to society in general. Underlying the application of the concepts of participation and social connectivity to older people is the idea that old age places people outside the mainstream: that older people's participation and social connectivity is wanting in scale or scope, that they do want or should want to participate more and that it is chiefly the impediment of old age that constrains their participation. Categorised as outside the mainstream, older people become defined by their age rather than those other salient aspects of their social identity, class, sexuality, ethnicity, education, histories and personal outlook that policy makers and implementers find difficult to respond to in relation to older people. This chapter examines older people's experiences of participation and social connectivity across a range of geographical and social locations within the UK and within low and middle-income countries, in order to test conceptualisations of older people's participation and social connectivity against experience, and to begin to trace the individual, local, meso and macro factors and linkages that need to be addressed to extend meaningful participation and engagement for people who happen to be older.
Not all older people enjoy equal chances to experience positive health levels. It remains the case that persons aged 65 years and over experience a variety of chronic conditions, ranging from physical ailments, such as arthritis, respiratory diseases and circulatory problems, to mental health issues, such as anxiety, depression and dementia (Victor, 2010). The prevalence of these conditions and multiple pathologies experienced by older individuals is largely age-related. One consequence of this increase in morbidity with age is that, singly or in combination, these chronic conditions can challenge the ability of older people to live independently in the community by compromising their performance of essential activities of daily living. Older people in middle- and high-income countries who need care to maintain their independence at home in later life have three potential sources of help and support, namely, the formal services provided by statutory/voluntary agencies, paid services and informal care provided ‘free’ by family members. However, within the UK context, it is acknowledged that the boundaries between formal, semi-formal and informal caring systems are becoming increasingly blurred with the implementation of personalised care and individual budgets. This chapter focuses upon the role of the ‘informal’ network in supporting older people to live independently within the community. The first part briefly outlines the definition of ‘care’ and caring by enumerating the types of care needs presented by older people by examining problems encountered in performing essential activities of daily living. The subsequent parts consider the emergence of research examining the role of ‘carers’, while also discussing who cares, and their location within the broader care economy. Interwoven within such an analysis is the examination of the importance of class, gender and ethnicity for the provision and receipt of care in later life.
Care and caring
There is an extensive body of work looking at the definition of both care and caring, and this work needs to be located within broader debates about policies for older people (Fine, 2013). In terms of informal family based-care, this is clearly evident in the early studies of Sheldon (1948), who notes that of the 90% of older people who needed help with domestic matters, only 10% were aided by persons outside of the immediate family.
To categorise records according to primary cardiac diagnosis in the United Kingdom Central Cardiac Audit Database in order to add this information to a risk adjustment model for paediatric cardiac surgery.
Codes from the International Paediatric Congenital Cardiac Code were mapped to recognisable primary cardiac diagnosis groupings, allocated using a hierarchy and less refined diagnosis groups, based on the number of functional ventricles and presence of aortic obstruction.
A National Clinical Audit Database.
Children undergoing cardiac interventions: the proportions for each diagnosis scheme are presented for 13,551 first patient surgical episodes since 2004.
In Scheme 1, the most prevalent diagnoses nationally were ventricular septal defect (13%), patent ductus arteriosus (10.4%), and tetralogy of Fallot (9.5%). In Scheme 2, the prevalence of a biventricular heart without aortic obstruction was 64.2% and with aortic obstruction was 14.1%; the prevalence of a functionally univentricular heart without aortic obstruction was 4.3% and with aortic obstruction was 4.7%; the prevalence of unknown (ambiguous) number of ventricles was 8.4%; and the prevalence of acquired heart disease only was 2.2%. Diagnostic groups added to procedural information: of the 17% of all operations classed as “not a specific procedure”, 97.1% had a diagnosis identified in Scheme 1 and 97.2% in Scheme 2.
Diagnostic information adds to surgical procedural data when the complexity of case mix is analysed in a national database. These diagnostic categorisation schemes may be used for future investigation of the frequency of conditions and evaluation of long-term outcome over a series of procedures.
Having a fall and then lying on the floor for an hour or more is known as a ‘long lie’, which is associated with serious injury and an elevated risk of admission to hospital, long-term care and death. Personal call alarms are designed to prevent long lies, although little is known about their use. Using cross-sectional data from the English Longitudinal Study on Ageing, this study investigated the proportion of self-reported users of personal call alarms among 3,091 community-dwelling adults aged 65+ who reported difficulties of mobility or activities of daily living. The characteristics of users were then explored through logistic regressions comparing those living alone with those living with others. One hundred and eighty people self-reported using a personal call alarm (6%). Multivariate regression found the following to significantly predict personal call alarm use among both those living alone and with others: greater difficulty with activities/instrumental activities of daily living, older age, and for those living with others only: lower score on the quality of life subscale for control. Personal call alarm use may be markedly lower than the 30 per cent annual incidence of falls among community-dwelling older people. Better understanding is needed of the reasons for low usage, even amongst those at highest falls risk for whom such alarms are most likely to be beneficial.