A systematic narrative review of consumer‐directed care for older people: implications for model development

Consumer‐directed care is increasingly becoming a mainstream option in community‐based aged care. However, a systematic review describing how the current evaluation research translates into practise has not been published to date. This review aimed to systematically establish an evidence base of user preferences for and satisfaction with services associated with consumer‐directed care programmes for older people. Twelve databases were searched, including MedLine, BioMed Central, Cinahl, Expanded Academic ASAP, PsychInfo, ProQuest, Age Line, Science Direct, Social Citation Index, Sociological Abstracts, Web of Science and the Cochrane Library. Google Scholar and Google were also searched. Eligible studies were those reporting on choice, user preferences and service satisfaction outcomes regarding a programme or model of home‐based care in the United States or United Kingdom. This systematic narrative review retrieved literature published from January 1992 to August 2011. A total of 277 references were identified. Of these 17 met the selection criteria and were reviewed. Findings indicate that older people report varying preferences for consumer‐directed care with some demonstrating limited interest. Clients and carers reported good service satisfaction. However, research comparing user preferences across countries or investigating how ecological factors shape user preferences has received limited attention. Policy‐makers and practitioners need to carefully consider the diverse contexts, needs and preferences of older adults in adopting consumer‐directed care approaches in community aged care. The review calls for the development of consumer‐directed care programmes offering a broad range of options that allow for personalisation and greater control over services without necessarily transferring the responsibility for administrative responsibilities to service users. Review findings suggest that consumer‐directed care approaches have the potential to empower older people.     

The (cost‐)effectiveness of preventive,integrated care for community‐dwelling frail older people: A systematic review

Integrated care is increasingly promoted as an effective and cost‐effective way to organise care for community‐dwelling frail older people with complex problems but the question remains whether high expectations are justified. Our study aims to systematically review the empirical evidence for the effectiveness and cost‐effectiveness of preventive, integrated care for community‐dwelling frail older people and close attention is paid to the elements and levels of integration of the interventions. We searched nine databases for eligible studies until May 2016 with a comparison group and reporting at least one outcome regarding effectiveness or cost‐effectiveness. We identified 2,998 unique records and, after exclusions, selected 46 studies on 29 interventions. We assessed the quality of the included studies with the Effective Practice and Organization of Care risk‐of‐bias tool. The interventions were described following Rainbow Model of Integrated Care framework by Valentijn. Our systematic review reveals that the majority of the reported outcomes in the studies on preventive, integrated care show no effects. In terms of health outcomes, effectiveness is demonstrated most often for seldom‐reported outcomes such as well‐being. Outcomes regarding informal caregivers and professionals are rarely considered and negligible. Most promising are the care process outcomes that did improve for preventive, integrated care interventions as compared to usual care. Healthcare utilisation was the most reported outcome but we found mixed results. Evidence for cost‐effectiveness is limited. High expectations should be tempered given this limited and fragmented evidence for the effectiveness and cost‐effectiveness of preventive, integrated care for frail older people. Future research should focus on unravelling the heterogeneity of frailty and on exploring what outcomes among frail older people may realistically be expected.     

Does older adults’ use of social care influence their healthcare utilisation? A systematic review of international evidence

Improving our understanding of the complex relationship between health and social care utilisation is vital as populations age. This systematic review aimed to synthesise evidence on the relationship between older adults’ use of social care and their healthcare utilisation. Ten databases were searched for international literature on social care (exposure), healthcare use (outcome) and older adults (population). Searches were carried out in October 2016, and updated May 2018. Studies were eligible if they were published after 2000 in a high income country, examined the relationship between use of social care and healthcare utilisation by older adults (aged ≥60 years), and controlled for an indicator of need. Study quality and bias were rated using the National Institute of Health (NIH) Quality Assessment Tool for Observational Cohort and Cross‐Sectional Studies. Study data were extracted and a narrative synthesis was conducted. Data were not suitable for quantitative synthesis. Thirteen studies were identified from 12,065 citations. Overall, the quality and volume of evidence was low. There was limited evidence to suggest that longer lengths of stay in care homes were associated with a lower risk of inpatient admissions. Residents of care homes with onsite nursing had fewer than expected admissions to hospital, compared to people in care homes without nursing, and adjusting for need. Evidence for other healthcare use outcomes was even more limited and heterogeneous, with notable gaps in primary care. We conclude that older adults’ use of care homes may moderate inpatient admissions. In particular, the presence of registered nurses in care homes may reduce the need to transfer residents to hospital. However, further evidence is needed to add weight to this conclusion. Future research should build on this evidence and address gaps regarding the influence of community based social care on older adults’ healthcare use. A greater focus on primary care outcomes is imperative.     

Perceived needs of carers of people with psychosis: An Australian longitudinal population‐based study of caregivers of people with psychotic disorders

Studies have documented the perceived needs of carers of people with psychosis but most recruitment has utilised convenience sampling resulting in limited understanding of carers’ needs. This longitudinal study was conducted within the second Australian prevalence study of psychosis, aiming to obtain generalisable findings regarding perceived needs of carers of people with psychosis. Semi‐structured interviews were conducted with 98 carers of people with psychosis recruited in the Australian prevalence study of psychosis. Seventy‐eight of the carers were reinterviewed 1 year later to measure changes in their perceived needs. Correlational and paired T tests were conducted to identify relationships between perceived needs and carer's health and well‐being, and changes in levels of perceived needs over time. Qualitative responses were structurally coded by segmentation according to the Carers’ and Users’ Expectations of Services—Carer version. Thematic analysis of common words and phrases was undertaken to identify key themes concerning carers’ perceived needs. There was minimal improvement in carers’ perceived needs over time and their needs were closely related to their perception of their own social connectedness, psychological health and quality of life. Five themes were identified: Greater involvement of carers in the treatment plan, provision of relevant information to carers, multiple biopsychosocial support for carers, well‐being and independence interventions for people with psychosis, and choice to care and alternate caring arrangements. Although policy recognises the need to support carers, findings show that focused interventions are required to address carers’ perceived needs more holistically in current mental health services. To support carers’ recovery, services need to include carers in treatment planning, and consider ways to address their needs and improve their own health and well‐being.     

Are reasons for care‐giving related to carers’ care‐related quality of life and strain? Evidence from a survey of carers in England

In England, choice and control is promoted for service users in relation to social care services. Increased choice and control has also been promoted for unpaid carers, although this is still relatively underdeveloped. There is limited recognition of carers’ choice in terms of the decision of whether to provide care. Alongside the promotion of choice and control, there has also been a focus on quality of life as an outcome of social care for care‐recipients and their carers. Although it is known that carer choice (in terms of the decision of whether or not to provide care) is related to increased burden and poorer psychological health, there is limited evidence of the relationship between reasons for caring and care‐related quality of life (CRQoL) and subjective strain in England. In this study, 387 carers were surveyed across 22 English local authorities between June 2013 and March 2014. Multiple regression analysis explored the relationship between carer‐reported reasons for caring and CRQoL and strain, whilst controlling for individual characteristics (e.g. age). Reasons for caring were important predictors of CRQoL and strain. Where people were carers because social services suggested it or the care‐recipient would not want help from anyone else, this was related to lower CRQoL. By contrast, where carers took on care‐giving because they had time to care, this was significantly associated with better CRQoL. Carers reported greater strain where they provided care because it was expected of them. These findings are relevant to policy and practice because they indicate that, while social care systems rely on carers, the limiting of carers’ choice of whether to provide care is related to worse outcomes. Increased awareness of this relationship would be beneficial in developing policy and practice that improves the QoL of care‐recipients and also their carers.     

Gaps in the evidence on improving social care outcomes: findings from a meta‐review of systematic reviews

Adult social care continues to be a central policy concern in the UK. The Adult Social Care Outcomes Framework (ASCOF) is a range of measures nationally available to drive forward improvement on outcomes and quality in local councils. While there is an emphasis on improving transparency, quality and outcomes, drawing on research evidence to achieve these aims is often difficult because the evidence is not easily identifiable, is disparate or of variable quality. We conducted a meta‐review to analyse and summarise systematic review‐level evidence on the impact of interventions on the four outcomes set out in the ASCOF: quality of life, delaying and reducing the need for services, satisfaction with services and safeguarding of vulnerable adults. This paper focuses on the availability of review‐level evidence and the presence of significant gaps in this evidence base. A range of health and social care databases were searched, including MEDLINE, ASSIA and The Cochrane Library in January and February 2012. All systematic reviews evaluating the efficacy of social care interventions for improving ASCOF outcomes for older people, people with long‐term conditions, mental health problems or physical and/or learning disabilities were eligible. Two reviewers independently screened systematic reviews for quality and relevance and extracted data; 43 systematic reviews were included, the majority of which examined the impact of interventions on quality of life (n = 34) and delaying and reducing the need for support (n = 25). Limited systematic review‐level evidence was found regarding satisfaction with services and safeguarding. There were also significant gaps in relation to key social care interventions and population groups. Research priorities include addressing these gaps and the collation of data on interventions, outcomes and populations more closely related to social care. Overall, a more relevant, comprehensive and robust evidence base is required to support improvement of outcomes for recipients of adult social care.     

The Effectiveness of Youth Centers in Increasing Use of Sexual and Reproductive Health Services: A Systematic Review

This study presents findings from a systematic review of the evidence regarding the effectiveness of youth centers in increasing use of sexual and reproductive health (SRH) services in lower‐ and middle‐income countries. Evidence from peer‐reviewed and gray literature between 1990 and 2010 was reviewed. After the screening of 3,769 citations, 21 studies reporting on 17 youth center programs were included, and were ranked by strength of evidence. Considerable consistency in findings across studies was observed. Youth centers generally served a relatively small proportion of young people living nearby. The main users were young men attending school or college, with a significant proportion older than the target age. Users of the on‐site SRH services were predominantly young women, with a significant proportion older than the target age group. Uptake of services was generally low. Despite widespread emphasis on youth centers as a strategy for encouraging young people to access SRH services, results from these studies have not been encouraging, and cost‐effectiveness for these purposes is likely to be low.     

Patients attending an accident and emergency department for primary medical care

An increasing number of people seek primary care at casualtyor accident and emergency departments of hospitals. A questionnairewas completed by patients attending for primary care at an Australianhospital. The study aimed to determine why patients chose thehospital fortheir medical care, whether patients triaged tothe Primary Care Unit differed from patients triaged to theCasualty section of the Accident and Emergency Department, andwhether the characteristics of patients attending at daytimediffered from those attending out of hours. There were no significantdifferences between daytime and out-of-hours attenders accordingto sex or whether born in Australia or not. More children presentedat night or at the weekend; more older people presented by day.There were more single, divorced, separated and widowed patientsamong the daytime attenders. Daytime attenders had significantlylower incomes than out-of-hours attenders, were less likelyto have a local general practitioner or full health insurance:most had a health care card and cost may have been a factorin their attendance. Out-of-hours attenders who had a localgeneral practitioner appeared to be unaware of any deputizingservices or had rejected them in favour of the hospital service.     

Good practice in social care for disabled adults and older people with severe and complex needs: evidence from a scoping review

This article reports findings from a scoping review of the literature on good practice in social care for disabled adults and older people with severe and complex needs. Scoping reviews differ from systematic reviews, in that they aim to rapidly map relevant literature across an area of interest. This review formed part of a larger study to identify social care service models with characteristics desired by people with severe and complex needs and scope the evidence of effectiveness. Systematic database searches were conducted for literature published between January 1997 and February 2011 on good practice in UK social care services for three exemplar groups: young adults with life‐limiting conditions; adults who had suffered a brain injury or spinal injury and had severe or complex needs; and older people with dementia and complex needs. Five thousand and ninety‐eight potentially relevant records were identified through electronic searching and 51 by hand. Eighty‐six papers were selected for inclusion, from which 29 studies of specific services were identified. However, only four of these evaluated a service model against a comparison group and only six reported any evidence of costs. Thirty‐five papers advocated person‐centred support for people with complex needs, but no well‐supported evaluation evidence was found in favour of any particular approach to delivering this. The strongest evaluation evidence indicated the effectiveness of a multidisciplinary specialist team for young adults; intensive case management for older people with advanced dementia; a specialist social worker with a budget for domiciliary care working with psycho‐geriatric inpatients; and interprofessional training for community mental health professionals. The dearth of robust evaluation evidence identified through this review points to an urgent need for more rigorous evaluation of models of social care for disabled adults and older people with severe and complex needs.     

Caring for children with physical disability in Kenya: potential links between caregiving and carers' physical health

Background The health of a carer is a key factor which can affect the well‐being of the child with disabilities for whom they care. In low‐income countries, many carers of children with disabilities contend with poverty, limited public services and lack assistive devices. In these situations caregiving may require more physical work than in high‐income countries and so carry greater risk of physical injury or health problems. There is some evidence that poverty and limited access to health care and equipment may affect the physical health of those who care for children with disabilities. This study seeks to understand this relationship more clearly. Methods A mixed methods study design was used to identify the potential physical health effects of caring for a child with moderate‐severe motor impairments in Kilifi, Kenya. Qualitative data from in‐depth interviews were thematically analysed and triangulated with data collected during structured physiotherapy assessment. Results Carers commonly reported chronic spinal pain of moderate to severe intensity, which affected essential activities. However, carers differed in how they perceived their physical health to be affected by caregiving, also reporting positive benefits or denying detrimental effects. Carers focussed on support in two key areas; the provision of simple equipment and support for their children to physically access and attend school. Conclusions Carers of children with moderate‐severe motor impairments live with their own physical health challenges. While routine assessments lead to diagnosis of simple musculoskeletal pain syndromes, the overall health status and situation of carers may be more complex. As a consequence, the role of rehabilitation therapists may need to be expanded to effectively evaluate and support carers' health needs. The provision of equipment to improve their child's mobility, respite care or transport to enable school attendance is likely to be helpful to carers and children alike.     

Adverse Outcomes of Polypharmacy in Older People: Systematic Review of Reviews

ObjectivePolypharmacy is widespread among older people, but the adverse outcomes associated with it are unclear. We aim to synthesize current evidence on the adverse health, social, medicines management, and health care utilization outcomes of polypharmacy in older people.DesignA systematic review, of systematic reviews and meta-analyses of observational studies, was conducted. Eleven bibliographic databases were searched from 1990 to February 2018. Quality was assessed using AMSTAR (A Measurement Tool to Assess Systematic Reviews).Setting and participantsOlder people in any health care setting, residential setting, or country.ResultsTwenty-six reviews reporting on 230 unique studies were included. Almost all reviews operationalized polypharmacy as medication count, and few examined medication classes or disease states within this. Evidence for an association between polypharmacy and many adverse outcomes, including adverse drug events and disability, was conflicting. The most consistent evidence was found for hospitalization and inappropriate prescribing. No research had explored polypharmacy in the very old (aged ≥85 years), or examined the potential social consequences associated with medication use, such as loneliness and isolation.Conclusions and implicationsThe literature examining the adverse outcomes of polypharmacy in older people is complex, extensive, and conflicting. Until polypharmacy is operationalized in a more clinically relevant manner, the adverse outcomes associated with it will not be fully understood. Future studies should work toward this approach in the face of rising multimorbidity and population aging.     

Development of guidelines to facilitate improved support of South Asian carers by primary health care teams

BACKGROUND: Evidence based guidelines are regarded as an appropriate basis for providing effective health care, but few guidelines incorporate the views of users such as carers. AIM:To develop guidelines to assist primary health care teams (PHCTs) in their work with carers within South Asian communities. METHODS: The guidelines were drawn up by a development group consisting of members of teams in areas with South Asian communities (Leicester and Bradford). The teams were invited to make their recommendations based on a systematic review of literature on minority ethnic carers and the findings of a study of the needs and experiences of local South Asian carers. A grading system was devised to enable the teams and a group of expert peer reviewers to assess the quality of evidence in support of each recommendation. RESULTS: The teams agreed seven recommendations, graded according to available evidence and strength of opinion. External peer review supported the PHCTs' interpretation of evidence and their recommendations. The recommendations included consideration of communication and information for carers, coordination of care within teams, and recognition by team members of the roles of carers and their cultural and religious beliefs. CONCLUSION: There are particular steps that PHCTs can take to improve their support of South Asian carers. It is possible to develop guidelines that take users' views into account and incorporate evidence from qualitative studies.     

Treatments for late life depression in primary care--a systematic review

BACKGROUND: Depression is common among older people. It is associated with increased mortality and use of health services. We could identify no prior systematic review of treatment for depression in either primary care attenders or population samples of older people. OBJECTIVES: The aim of this study was to carry out a systematic review of trials of treatments for depression of patients over 60 years of age in primary care or population samples. METHODS: We searched Medline, Embase, Cinahl, the Cochrane Library, Psyclit, BIDS--Social Science and BIDS--Science Citation Indices for trials of drug treatment, interpersonal psychotherapy, cognitive behavioural psychotherapy, counselling and social interventions for late life depression in English, French or German published between 1980 and June 1999. RESULTS: Of the studies identified, only two were of patients over 60 years of age and met all inclusion criteria for content and quality. Three further studies that were not restricted to but included patients over the age of 60 years also fulfilled our criteria. We found no studies of psychological therapies for depression in older people. With few exceptions, studies were limited to older people who reached a diagnostic threshold and excluded those with 'subcase level depression'. CONCLUSION: There is little evidence of effectiveness for a variety of treatment approaches for depression in older people in primary care, particularly in those with less severe depression. As older people take more medication, making contra-indications to the use of antidepressant drugs more likely, there is a pressing need for studies of the efficacy of non-pharmacological interventions in primary care settings.     

Factors Associated With Emergency Department Visits by People With Dementia Near the End of Life: A Systematic Review

ObjectivesEmergency department (ED) attendance is common among people with dementia and increases toward the end of life. The aim was to systematically review factors associated with ED attendance among people with dementia approaching the end of life.DesignSystematic search of 6 databases (MEDLINE, EMBASE, ASSIA, CINAHL, PsycINFO, and Web of Science) and gray literature. Quantitative studies of any design were eligible. Newcastle-Ottawa Scales and Cochrane risk-of-bias tools assessed study quality. Extracted data were reported narratively, using a theoretical model. Factors were synthesized based on strength of evidence using vote counting (PROSPERO registration: CRD42020193271).Setting and ParticipantsAdults with dementia of any subtype and severity, in the last year of life, or in receipt of services indicative of nearness to end of life.MeasurementsThe primary outcome was ED attendance, defined as attending a medical facility that provides 24-hour access to emergency care, with full resuscitation resources.ResultsAfter de-duplication, 18,204 titles and abstracts were screened, 367 were selected for full-text review and 23 studies were included. There was high-strength evidence that ethnic minority groups, increasing number of comorbidities, neuropsychiatric symptoms, previous hospital transfers, and rural living were positively associated with ED attendance, whereas higher socioeconomic position, being unmarried, and living in a care home were negatively associated with ED attendance. There was moderate-strength evidence that being a woman and receiving palliative care were negatively associated with ED attendance. There was only low-strength evidence for factors associated with repeat ED attendance.Conclusions and ImplicationsThe review highlights characteristics that could help identify patients at risk of ED attendance near the end of life and potential service-related factors to reduce risks. Better understanding of the mechanisms by which residential facilities and palliative care are associated with reduced ED attendance is needed.     

Accessibility and equity of health and social care services: exploring the views and experiences of Bangladeshi carers in South Wales, UK

There is a paucity of information regarding the extent and nature of caring provided by minority ethnic communities. The proportion of older people from these communities will dramatically increase in the next 20 years, which will be accompanied by increasing health and social care needs and an increased demand for carers. A qualitative, exploratory study was conducted to identify the health and social care needs of informal carers, who were caring for a dependent adult from a Bangladeshi community in South Wales, UK. This paper focuses on Bangladeshi carers' access to formal support services provided by the statutory, private and voluntary sectors to assist them with their caring responsibilities. The findings are based on data collected using face-to-face, focused interviews with 20 Bangladeshi carers. Purposive and snowball sampling were used to recruit the sample. The data were analysed using thematic content analysis. The dimensions of accessibility and equity of quality of care were drawn upon to aid understanding of the findings. Bangladeshi carers faced a number of barriers in accessing health and social service provision, which impeded uptake of these services. Additionally, there was evidence of inequity in service provision. Recommendations for improving the accessibility of health and social care services are proposed, which may assist in promoting more equitable services for carers from the Bangladeshi community.     

Supporting the transition of looked-after young people to independent living: a systematic review of interventions and adult outcomes

This systematic review aimed to synthesize evidence on the effectiveness of transition support services (TSSs) that are delivered towards the end of care for looked-after young people (LAYP) on their adult outcomes, including education, employment, substance misuse, criminal and offending behaviour, parenthood, housing and homelessness and health. Searches of health, social science and social care bibliographic databases were conducted and records were screened for relevance. Citation and reference list searches were conducted on included studies. Relevant studies were synthesized and critically appraised. Seven studies were identified (five retrospective and two prospective cohort studies), six of which were conducted in the USA and one in the UK. Overall, LAYP who received TSSs were more likely to complete compulsory education with formal qualifications, be in current employment, be living independently and less likely to be young parents. There was no reported effect of the impact of TSSs on crime or mental health, and mixed findings for homelessness. The range of TSS components investigated and reported varied considerably within and between studies, with limited evidence of long-term outcomes. The literature reviewed offers no reliable conclusions on the effectiveness of TSSs at this time due to variations in research quality and because few formal evaluations of existing TSSs have been conducted, resulting in mixed evidence in terms of positive, negative and neutral impact on outcomes. Further high-quality, robust research to evaluate the effectiveness of TSSs on adult outcomes for young people in the short, medium and longer term is needed to address the health inequalities experienced by this small but vulnerable group and to inform decision making about service provision.     

Clinical and Subjective Oral Health Status of Care Home Residents in Europe: A Systematic Review

ObjectiveSeveral studies demonstrated the poor oral health of care home residents in Europe but there is no systematic overview of the relevant literature. The objective of this study was to systematically review the evidence on the clinical and subjective oral health outcomes of care home residents in Europe.DesignThe study design is a systematic review.Methods and ParticipantsAll included publications presented data on clinical and/or subjective oral health outcomes in care home residents in Europe with no restrictions for language or study design. MEDLINE, Embase, and CINAHL were searched, including publications from January 2010 onward. Data extraction and quality assessment (Qualsyst tool) was performed by 2 researchers independently. Findings were synthesized narratively, lack in data homogeneity restricted the relevance of a meta-analysis.ResultsEighty-three papers from 18 countries were included in the systematic review, with a sample size ranging from 39 to 92,827 participants. Their mean age was older than 80 years. The residents had few natural teeth, with fewer than a third a functional natural dentition. Removable dentures were present in half to 80% of residents. A high prevalence of dental caries was reported. Oral hygiene was insufficient, for both natural teeth and removable dentures. Few residents had a healthy periodontium. Clinical treatment needs were found in most residents. Perceived treatment needs were high with at least one-third of care home residents reporting a need for care due to poor oral health. A fifth to half of the residents reported negative impacts of their oral condition on their everyday lives.Conclusion and ImplicationsThis systematic review clearly highlights the poor oral health and high burden of oral conditions among care home residents across Europe, irrespective of country or health care system. There is need for substantial policy actions to improve oral health in care homes.     

Experienced Quality of Post-Acute and Long-Term Care From the Care Recipient's Perspective–A Conceptual Framework

This article aims to conceptualize experienced quality of post-acute and long-term care for older people as perceived by care recipients. An iterative literature review and consultations with stakeholders led to the development of the INDividually Experienced QUAlity of Long-term care (INDEXQUAL) framework. INDEXQUAL presents the process of an individual care experience consisting of a pre (expectations), during (experiences), and post (assessment) phase. Expectations are formed prior to an experience by personal needs, past experiences, and word-of-mouth. An experience follows, which consists of interactions between the players in the caring relationships. Lastly, this experience is assessed by addressing what happened and how it happened (perceived care services), how this influenced the care recipient's health status (perceived care outcomes), and how this made the care recipient feel (satisfaction). INDEXQUAL can serve as a framework to select or develop methods to assess experienced quality of long-term care. It can provide a framework for quality monitoring, improvement, and transparency.