The challenges associated with providing community care for people with complex needs in rural areas: a qualitative investigation

The aim of the present study was to explore the experiences of recipients and providers of community care in rural areas in Northern Ireland. Additionally, the authors sought to examine the impact of location, housing and environmental factors on the delivery of community care to older people with complex needs. Individual, semistructured interviews were held with service users (n = 17) and family carers (n = 14). Individual and focus group interviews were conducted with care assistants, health and social care professionals, and senior managers from a large health and social care trust and health and social services board in Northern Ireland. The importance of enabling older people to remain in their own homes and communities was emphasised by all participants. The main challenges associated with care provision in rural areas included: difficulties recruiting care assistants; lack of choice of care assistants; isolation; travel and distance between clients and their care assistants; and poor housing conditions. There was a general consensus among participants that the effectiveness of rural community care was perceived to be reliant upon the goodwill of the community. Additionally, changing demographic trends and the predicted shortfall in the number of formal and informal carers were considered key issues for service planners. A number of creative strategies could be used to address many of the limitations associated with rural isolation. These should involve capitalising on available community networks. However, planners should also acknowledge that additional resources are required to maintain older people in rural communities.     

Joint commissioning. Going halves

Joint commissioning and provision of mental health services in Somerset failed to produce significant benefits to users over its first two years. Users considered access to services deteriorated and concerns remain that there is no alternative to hospital admission in crises. Users and carers were included as non-voting members of the commissioning board, but users felt less involved in care planning than previously. The combined health and social care trust does not seem to have delivered anything which has not been achieved elsewhere without the transfer of social care staff to a new employer.     

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.     

Total purchasing, community and continuing care: lessons for future policy developments in the NHS

The introduction of total purchasing pilots (TPPs) into the National Health Service (NHS) gave general practitioners (GPs) significant new opportunities to take responsibility for the development of community and continuing care (CCC) services. Based on five case studies of TPPs involved in developing CCC this paper asks three questions: (1) to what extent were the TPP’s involvement in CCC informed by an awareness of CCC policy?; (2) were TPPs involved in joint commissioning to develop integrated purchasing or provision which was informed by population based needs assessment?; (3) were TPPs seeking to involve users, carers and voluntary agencies in their plans? The findings indicate that TPPs showed little awareness of national or local policy for CCC, although their project initiatives did address some of the policy issues (in particular a recognition of the need for joint working at the practice level). At the time of fieldwork, four of the case study TPPs had begun to investigate the potential for integrated purchasing, and three of them had relatively sophisticated models of both horizontally and vertically integrated provision of care. However, the TPPs developments were not based on systematic population based needs assessment. The paper concludes that there is potential for the primary care led groups proposed in the recent white papers in England, Scotland and Wales to improve integration of care both horizontally and vertically. However, they may need policy guidance and push to: encourage them to put CCC high on their agenda for action; to work with people with expertise in population based, prevention focused, needs assessment; and to find innovative ways to include users, carers and voluntary agencies. Incentives or levers (such as control over budgets) may be needed to promote joint working between staff in different agencies.     

Is it time to abandon care planning in mental health services? A qualitative study exploring the views of professionals,service users and carers

Background

It has been established that mental health‐care planning does not adequately respond to the needs of those accessing services. Understanding the reasons for this and identifying whose needs care plans serve requires an exploration of the perspectives of service users, carers and professionals within the wider organizational context.

Objective

To explore the current operationalization of care planning and perceptions of its function within mental health services from the perspectives of multiple stakeholders.

Settings and participants

Participants included 21 mental health professionals, 29 service users and 4 carers from seven Mental Health Trusts in England. All participants had experience of care planning processes within secondary mental health‐care services.

Methods

Fifty‐four semi‐structured interviews were conducted with participants and analysed utilizing a qualitative framework approach.

Findings

Care plans and care planning were characterized by a failure to meet the complexity of mental health needs, and care planning processes were seen to prioritize organizational agendas and risk prevention which distanced care planning from the everyday lives of service users.

Discussion and conclusions

Care planning is recognized, embedded and well established in the practices of mental health professionals and service users. However, it is considered too superficial and mainly irrelevant to users for managing mental health in their everyday lives. Those responsible for the planning and delivery of mental health services should consider ways to increase the relevance of care planning to the everyday lives of service users including separating risk from holistic needs assessment, using support aids and utilizing a peer workforce in this regard.     

Health begins at home: the housing-health interface for older people

Housing issues are of fundamental importance to the health and independence of older people in Britain, but this concept is not reflected in planning for health, housing, or community care. An analysis of community care plans and public health reports reflects how little attention the majority give either to the importance of housing or to the potential of primary care as a means of information exchange between older people and planning processes. Interviews with practitioners and policy makers in four cities, combined with a review of the considerable literature on planning and joint planning in the health and social services, helped to identify the problems in achieving more integrated systems. Structural blockages as fundamental as the definitions of 'health' and 'housing', the attitude of society to manual work, the hidden nature of the problems of older people, and the failure of planning to categorize according to the level of need are identified and summarized in a chart showing how these factors are linked and self-reinforcing. The article concludes with a vision of how things might work more effectively without requiring unrealistic changes. The authors offer a challenge to planners and joint commissioners to gather different kinds of information on need; to have long-term, as well as short-term, strategies; to think broadly across categories of issue; and to be prepared to invest money in new ways. Most significantly, by redefining the role of the Director of Public Health, we identify a focal point at which the responsibility and authority for coordinating, championing, and review could lie.     

'Carers' of people with mental health problems: proposals in current public mental health policy in nine countries

This study investigates how public mental health policy addresses the role and needs of those who care for people with mental health problems. Public mental health policy recognises that carers are at increased risk of poor health. Countries want to ensure that mental health services are responsive to the needs of "carers", that carers participate in the planning and implementation of services and that more information should be made available to carers. Respite care is recommended as a way to improve the health of both carers and service users. Unfortunately, policies only identify possibilities for intervention, and rarely identify specific actions to be taken or clarify who has responsibility for delivering interventions. Further the financial implications of the proposals and the need for additional trained staff are seldom discussed. Current proposals for helping carers are inadequate.     

Evaluating partnerships: a case study of integrated specialist mental health services

Partnerships are designed to facilitate the negotiation and delivery of public programmes cutting across the boundaries of a fragmented organisational landscape. This paper makes an empirical contribution to the study of the outcomes of partnership working, reporting results from a detailed United Kingdom case study of mental health services integration. It considers the county-wide establishment of a range of partnerships between a county council and multiple National Health Service organisations under Section 31 of the Health Act (1999), relating to mental health, learning disability, drug and alcohol, and child and adolescent mental health services. Arrangements included: integrated county-wide provision via a partnership trust; pooled commissioning and provision budgets; and joint commissioning arrangements between eight primary care trusts and the county council at a joint commissioning partnership board, supported by a joint commissioning team of officers. The evaluation explores the impact of integrated provision on service users, carers and team staff between 2002 and 2004. A multimethod approach incorporating qualitative and quantitative data was used: individual semistructured interviews and focus groups with staff, users and carers (2004); and questionnaires to team staff to explore role clarity and job satisfaction (2002 and 2004). While users and carers were largely positive towards the new provision, a range of alternative frames of reference towards inpatient episodes were identified, including notions of sanctuary and asylum, as well as lack of privacy and fears over safety. Similarly, there was some ambivalence over the dual focus of the teams on both users and carers. Small improvements overall in team staff scores for role clarity and job satisfaction masked variations between localities; such differences seem less to do with prior experience of partnership working than with recruitment difficulties. Additionally, the study raises methodological issues of relevance to the evaluation of complex social interventions. While partnership forms are themselves relatively easy to define, the attribution of improved outcomes to such arrangements is less straightforward - they are complex social interventions requiring enactment by individuals within specific contexts, typically involving many service changes against a turbulent policy background. Some implications for partnership evaluations are considered.     

Qualitative Review on Domains of Quality of Life Important for Patients,Social Care Users,and Informal Carers to Inform the Development of the EQ-HWB

ObjectivesTo identify the themes to inform the content of a new generic measure, the EQ-HWB (EQ Health and Wellbeing), that can be used in economic evaluation across health, social care, and public health, based on the views of users and beneficiaries of these services including informal carers.MethodsA qualitative review was undertaken. Systematic and citation searches were undertaken focusing on qualitative evidence of the impact on quality of life from reviews for selected health conditions, informal carers, social care users, and primary qualitative work used in the development of selected measures. A subset of studies was included in the review. Framework analysis and synthesis were undertaken based on a conceptual model.ResultsA total of 42 reviews and 24 primary studies were selected for inclusion in the review. Extraction and synthesis resulted in 7 high-level themes (with subthemes): (1) feelings and emotions (sadness, anxiety, hope, frustration, safety, guilt/shame); (2) cognition (concentration, memory, confusion, thinking clearly); (3) self-identity (dignity/respect, self-esteem); (4) “coping, autonomy, and control” relationships; (5) social connections (loneliness, social engagement, stigma, support, friendship, belonging, burden); (6) physical sensations (pain, discomfort, sleep, fatigue); and (7) activity (self-care, meaningful activities, mobility, communication, hearing, vision). Apart from physical sensations, most of the other themes and subthemes were relevant across both health and social care, including for informal carers.ConclusionsThe findings from this broad review identified themes that go beyond health and that are relevant to patients, informal carers, and social care users. The themes and subthemes informed the domains for the EQ-HWB.     

Mental health. Obstacle course

Focus groups of mental health practitioners, service users and carers, designed to test the competence of staff to deliver modern services, revealed wide discrepancies in perceptions. Staff saw the persistence of the medical model, and the risk-averse culture of trusts, as obstacles to delivering effective care. Users and carers felt generally uninvolved in care planning.     

Community participation in determining the needs of users and carers of rural community care services. Highland Community Care Forum

In this paper we present the methods and key outcomes of a community led needs assessment exercise. The needs assessment sought to enhance the development of rural community care services by ensuring the views of users and carers were secured and considered in joint planning processes. The research was developed by members of the North and West Sutherland Community Care Forum. A community profiling template was developed and employed in five parish areas of Sutherland. This was drawn from 45 interviews with key informants and 2 community workshops, In addition 54 users and carers were interviewed. The outcomes of the needs assessment exercise identified geographical and cultural factors which present difficulties in developing services as well as posing barriers to user involvement.     

Extending Medicaid coverage for family planning services: Alabama's first four years

OBJECTIVES: This study examines whether Alabama's Medicaid family planning demonstration program reaches a different segment of the population than the health department-based Title X family planning program, whether service use rates differ across clients using care within and outside of the Title X provider system, and whether additional risk assessment and care coordination services provided by health department personnel increase the likelihood that family planning clients return for follow-up visits over time. METHODS: Administrative data from four years of operation of the program were used to examine characteristics of the clientele, differences in services used across provider types included in the program, and the impact of risk assessments and care coordination on return visit rates. RESULTS: The number of family planning service users increased dramatically over the four-year period, but were more similar demographically to Title X clients than to Medicaid maternity clients. Growth was greatest among clients of non-Title X providers. Newly covered services, including risk assessments and care coordination, were available mostly to Title X clients, and these services were associated with a greater likelihood that clients returned for care in subsequent years. CONCLUSION: Expanded provider networks can increase the number of low income women using family planning services while risk assessment and care coordination can improve the effectiveness of these services. However, enhanced services may not be equally available across provider systems. Additional outreach efforts are needed to reach women eligible for publicly supported family planning services who are not currently using these services.     

Perspectives of self‐direction: a systematic review of key areas contributing to service users’ engagement and choice‐making in self‐directed disability services and supports

Self‐directed disability support policies aim to encourage greater choice and control for service users in terms of the health and social care they receive. The proliferation of self‐directed disability support policies throughout the developed world has resulted in a growing amount of research exploring the outcomes for service users, and their families and carers. Our understanding of the issues faced by people with disabilities, particularly how they make health and social care decisions and the key areas that determine their engagement with service providers within a self‐directed environment is limited. A synthesis of research is timely and can provide knowledge for service users and health and social care support providers to ensure their successful participation. A systematic review guided by the PRISMA approach explored (i) the key areas determining service users’ engagement with self‐directed disability services and supports, and (ii) how service users make informed decisions about providers. In October 2014 and April 2016, three databases – MEDLINE, CINAHL and Web of Science – were searched for research and review articles. Eighteen sources met the search criteria. Findings were mapped into either: key areas determining service user engagement, or service users’ informed decision‐making. Findings concerning key areas determining engagement fell into three themes – personal responsibility for budgeting, personalised approaches, and a cultural shift in practice and delivery among service providers. Findings about decision‐making yielded two themes – supporting informed decision‐making and inhibiting informed decision‐making. Literature suggests that self‐directed models of care may provide service users with increased control over the services that they receive. Increased control for some service users and their families requires independent external decision‐making support, particularly around the domains of budgeting, planning and hiring. Future research must continue to investigate the perspectives of service users pertaining to their engagement, as their participation is central to the effectiveness of the approach.     

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.     

The care management interface with general practice: a case study

This paper reports on a care management initiative at the interface of social work, general practice and district nursing. The aims were to describe the organizational factors, operational criteria and the views of key managers, professionals and users of the care management pilot based in general practice. A multi-method case study design was used. This comprised: retrospective analysis of general practitioner (GP) referrals to social services, reviews of case records of clients in the care management system, and in-depth interviews with stakeholders, professionals, users and carers. This paper focuses on the analysis of the referral information to social services and district nursing from general practice and the themes arising from the interview data such as communication, referral pathways and professional role boundaries. The views of users and carers are presented in terms of satisfaction with continuity, responsiveness and appropriateness of the assessment and delivery of care. Although this care management pilot was discontinued when the funding ceased, the evaluation showed that there were benefits in terms of improved understanding between general practitioners, social workers, and district nurses of working systems, procedures and the organizational constraints of joint working.     

The invisible worker: The role of the peon in Nepal's health service

Health services are most effective when tailored to fit the needs of particular populations. Thus, an underlying assumption is that social and cultural factors are fundamental to adequate health planning. To understand what socially relevant information is used, or perceived as being useful by policy makers, a study was made of the decision-making process involved in planning the rural health program in Nepal. Community participation in developing primary health care is a priority in this program. Despite the fact that planners are presently designing programs for community health volunteers, they are unaware of, or fail to utilize, social and cultural factors which affect local health care delivery.In Nepal, the peon, the lowest ranking worker in the health bureaucracy, performs many basic and crucial functions in the delivery of health services at the local level, such as dispensing medicine, dressing wounds and giving injections. In addition, he is the only worker who is actually from the village, who speaks the local dialects and has the most interaction and direct contact with patients. Rather than investigate who these peons are and what motivates them to assume voluntarily these same functions being proposed for the newly created community volunteer, their contribution is unrecognized and remains invisible to foreign and Nepalese health planners.This research bears out earlier observations that social and cultural data are not being used by most health planners dealing with Nepal. But even more significant, when planners are aware of social factors that affect health services, it does not appear to influence the planning of the rural health program. When a truly community based health worker arises, there are no mechanisms to change the established structure or procedures to take advantage of this fact. This illustrates the barriers within the bureaucracy to incorporating socially relevant information in health planning.     

Start-up analysis for marketing strategy

The complex start-up effect on utilization of health care services is too often overlooked or underestimated by marketing planners, leading to a range of negative consequences for both the users of services and the provider organization. Start-up analysis allows accurate estimation of these utilization effects for coordinated strategic planning among marketing finance, and operations.     

The role of family carers in the use of personal budgets by people with mental health problems

Personal budgets aim to increase choice and independence for people with social care needs but they remain underused by people with mental health problems compared to other disability groups. The use of personal budgets may impact on families in a variety of ways, both positive and negative. This paper draws on interviews, undertaken in 2012–2013 with 18 family carers and 12 mental health service users, that explored experiences of family involvement in accessing and managing personal budgets for a person with mental health‐related social care needs. The sample was drawn from three sites across England, with additional carers being recruited via voluntary sector networks. Our findings show that for many people with severe mental health needs who lack motivation and confidence to negotiate access to personal budgets, carers may provide the necessary support to enable them to benefit from this form of social care support. We illustrate the role carers may play in initiating, pursuing and maximising the level of support available through personal budgets. However, some carers interviewed considered that personal budget funding was reduced because of practitioners’ assumptions about carers’ willingness and ability to provide support. We also report perceived tensions between family carers and practitioners around appropriate involvement in decision‐making. The study findings have implications for local authorities, practitioners and family carers in supporting the involvement of family carers in support for people with severe mental health problems.     

Factors that promote and hinder joint and integrated working between health and social care services: a review of research literature

This article reports the results of a review of the research evidence related to joint working in the field of adult health and social care services in the UK. It explores whether recent reforms to joint working have met the objectives set by policy‐makers. The review followed an established methodology: electronic databases were searched using predetermined terms, abstracts were screened against inclusion criteria, studies that met the criteria were read in full and assessed for inclusion and data were extracted systematically. The findings of the review suggest that there is some indication that recent developments, in particular the drive to greater integration of services, may have positive benefits for organisations as well as for users and carers of services. However, the evidence consistently reports a lack of understanding about the aims and objectives of integration, suggesting that more work needs to be done if the full potential of the renewed policy agenda on integration is to be realised. Additionally, while the review acknowledges that greater emphasis has been placed on evaluating the outcome of joint working, studies largely report small‐scale evaluations of local initiatives and few are comparative in design and therefore differences between ‘usual care’ and integrated care are not assessed. This makes it difficult to draw firm conclusions about the effectiveness of UK‐based integrated health and social care services.     

Carers and the missing link: changing professional attitudes

The involvement of users and carers in service planning represents a central plank of reforms in social care, but clear guidance as to what this involvement should entail is absent from the legislation, leaving authorities to develop local involvement strategies. This paper is based on a project mapping the development of services for carers, carried out in the spring of 1994. We argue that the involvement of carers in planning processes at strategic levels will not guarantee changes in practice at lower levels. We discuss weaknesses in the existing literature regarding user and carer involvement, and suggest ways in which opportunities for ‘micro-level’ consultation can be developed.