The impact of personalisation on people from Chinese backgrounds: qualitative accounts of social care experience

The limited research that considers people from black and minority ethnic communities' experiences of personalisation tends to focus on personal budgets rather than personalisation per se. This article provides an opportunity to hear the voices of people from Chinese backgrounds and their experiences of personalisation. The study used individual semi‐structured interviews and focus groups to collect data from physically disabled people from Chinese backgrounds who lived in England, were aged between 18 and 70, and received social care. Data were analysed using an iterative and thematic approach, with early analysis informing the subsequent analytical rounds. The findings reveal that personalisation has the potential to transform the lives of people from Chinese backgrounds, especially when tailored support is available for people to understand and access personal budgets and put them to creative use. However, the impact of personalisation is barely evident because few eligible individuals access personal budgets or participate in co‐production. This is related to a lack of encouragement for service users to become genuine partners in understanding, designing, commissioning and accessing a diverse range of social care services to meet their cultural and social care needs.     

How can coproduction help to deliver culturally responsive disability support? A case study from Australia

How to improve access and quality of social services to respond to cultural diversity is receiving increased attention. Yet no approach to cultural responsiveness has been widely accepted. Coproduction has been championed in many service fields for better service outcomes and has the potential to inform practices for cultural responsiveness. This study explored how coproduction can be used to deliver culturally responsive social services. We conducted a qualitative case study and examined how an Australian disability service organisation operated a programme to improve cultural responsiveness with Australian Chinese people with disability and their families. The findings suggested that coproduction enabled the organisation to identify that the people with disability and their families considered services were culturally responsive when the staff were competent and committed to person-centred services. The coproduction contributed to continuous improvement of the services and revealed the qualities that were valued by the Australian Chinese service users. This study enriches the knowledge on coproduction by demonstrating the influence of the process of coproduction on outcomes for service users and providers. The study also contributes to the knowledge on cultural responsiveness by highlighting the elements of culturally responsive services valued by the service users. Coproduction could be more widely used for service development given its capacity to identify and respond to service needs. Practical implications for culturally responsive social services are that workforce training could focus on the principles of person-centred services and skills for working effectively with people from culturally diverse backgrounds.     

Needs in rare diseases during paediatric age

All rare diseases present a common set of challenges to the sufferers and their families: diagnosis, dealing with symptoms, health information, obtaining helpful medical care, availability of medications, disability and emotional impact. Children with rare disorders are an important population from health care services, and social services perspectives, and families are providing long-term care for these chronically ill children. The impact of rare disorders in children is far-reaching, extending beyond the child to all those with whom he/she has contact. Multiple facets of life are affected including social an family relationships, economical well-being and activities of daily living. The assessment of needs for rare disorders treatment is a critical step in providing high quality care and achieving patients' and families' satisfaction. Findings from different studies show that people with rare diseases have medical and social needs. Social needs are becoming more relevant in developed countries where health care services, even with limitations, have greater availability than social services. Furthermore, it seems that health care and social services for persons with rare diseases need to be improved to address the patients' needs and to provide better support to families. Validated tools with good psychometric properties are still needed to assess quality of care on the basis of patients and family needs.     

Interorganisational cooperation and its effects on community rehabilitation for people with severe mental disorders in Beijing,China: A case study

A national comprehensive management pilot project for mental health has been implemented in China to provide integrated care for people with severe mental disorders through strengthened cooperation among government organisations and between government and other relevant social organisations. The promotion of community rehabilitation has been included as a key part of this pilot program. The present study took the AD district of Beijing as a case study to examine interorganisational cooperation and its effects on community rehabilitation in a real-world setting. Interviews were conducted with 14 frontline workers, including 7 mental health workers from community health centres and 3 staff and 4 social workers working in rehabilitation centres. Five officials from relevant health and social welfare departments and a social work organisation were also interviewed. Experiences in Beijing revealed that interorganisational cooperation helped to build a multiagency workforce furnished with basic mental health knowledge at the community level, which rendered it possible for frontline workers to provide fundamental follow-up services, pilot the case management model of service provision and increase the provision of psychosocial rehabilitation services within the poorly resourced context of Chinese mental healthcare. Moreover, the engagement of social organisations provided bottom-up pressure to innovate through the active bringing forward of new ideas concerning cooperation and service delivery. However, differences in professional authority and commitment were observed. Health department officials and health professionals seemed to exercise a dominant role as compared to social welfare department officials and social workers. Future policy making should motivate social welfare department officials to improve social care for people with severe mental disorders. Social workers require training to improve their knowledge of mental health matters, and social organisations need greater latitude to strengthen their influence over the development of community rehabilitation services for people with severe mental disorders.     

Social support needs for equity in health and social care: a thematic analysis of experiences of people with chronic fatigue syndrome/myalgic encephalomyelitis

Background

Needs-based resource allocation is fundamental to equitable care provision, which can meet the often-complex, fluctuating needs of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). This has posed challenges both for those providing and those seeking support providers, in building shared understanding of the condition and of actions to address it. This qualitative study reports on needs for equity in health and social care expressed by adults living with CFS/ME.

Methods

The participants were 35 adults with CFS/ME in England, purposively selected to provide variation in clinical presentations, social backgrounds and illness experiences. Accounts of experienced needs and needs-related encounters with health and social services were obtained through a focus group (n = 6) and semi-structured interviews (n = 35). These were transcribed and needs related topics identified through data-led thematic analysis.

Findings

Participants emphasised needs for personalised, timely and sustained support to alleviate CFS/ME impacts and regain life control, in three thematic areas: (1) Illness symptoms, functional limitations and illness management; (2) practical support and social care; (3) financial support. Access of people with CFS/ME to support from health and social services was seen to be constrained by barriers stemming from social, cultural, organisational and professional norms and practices, further heightened for disadvantaged groups including some ethnic minorities. These reduced opportunities for their illness to be explained or associated functional limitations and social disadvantages to be addressed through social support. Participants sought more understanding of bio-psycho-social aspects of CFS/ME, of felt needs of people with CFS/ME and of human rights and disability rights, for providing person-centred, equitable care.

Conclusions

Changes in attitudes of health practitioners, policy makers and general public and more flexibly organised health and social care provision are needed to address equity issues in support needs expressed by people with CFS/ME, to be underpinned by research-based knowledge and communication, for public and professional education. Policy development should include shared decision-making and coordinated action across organizations working for people with CFS/ME, human rights and disadvantaged groups. Experiences of people with CFS/ME can usefully inform an understanding of equity in their health and social care.     

Cultural competency: professional action and South Asian carers

Inequality and exclusion are characteristic of the experience of UK South Asian communities. In health care, community needs are often not addressed by health and social welfare services. An increase in cultural competency is now part of identified policy. The aim of this paper is to examine the extent to which there is evidence of cultural competency amongst professionals concerning South Asian parents caring for a person with cerebral palsy. Semi-structured interviews were conducted with respondents from 19 service organisations. Results are presented on perceptions of service delivery and on the dynamics of service development: evidence is found that inadequate service delivery continues despite professional knowledge that it exists. Conditions necessary for the achievement of cultural competence are discussed. We suggest that service development to meet the needs of South Asian carers must form part of an overall strategy geared to change at different levels within and outside service organisations.     

What Turkish-speaking women expect in a German hospital and how satisfied they are with health care during their stay in a gynaecological hospital in Berlin - a comparative approach

Although cultural diversity in German metropolises is rapidly increasing, immigrant patients are rarely included in clinical studies. Specific needs of these patients are hardly known. In a comparative study, 320 German and 262 Turkish immigrant women, respectively, were interviewed via bilingual questionnaires to assess their expectations from and their satisfaction with provided health care services. While no significant differences could be found between basic expectations concerning anticipated health care standards between the two study groups, women of Turkish origin were markedly less satisfied with provided health care services. High expectations of immigrant patients towards information during their stay, communication with doctors and nurses and psychosocial services were only insufficiently met. The results indicate that specific health-relevant factors, such as social and educational status, knowledge of German language and health knowledge together with structural deficiencies of a health care service that is not prepared to correspond properly to patients of different social and cultural backgrounds, have a negative impact on patient satisfaction for migrant women.     

Support networks for Chinese older immigrants accessing English health and social care services: the concept of Bridge People

As Chinese immigrants in the United Kingdom age, they experience an increasing need to access health and care services. It has, however, been reported that older Chinese immigrants have difficulties in accessing these services. This study explored the experiences of this population in using health and care services and the strategies that they adopted to address their difficulties. A grounded theory method with a two‐staged research design was used. Stage 1 explored the participants’ experiences of ageing and use of health and social care services through focus group interviews. Stage 2 investigated the strategies individuals used to support access to and use of services through individual interviews. Forty‐four older Chinese people and 15 supporters participated in interviews during August 2011 and May 2013. These older Chinese immigrants were challenged in knowing about and in accessing services. Their difficulties were attributed to language barriers, lack of information and instrumental support, and emotional and cultural issues regarding use of health and care services. Their supporters facilitated access to services and acted as a bridge between the service and the user; therefore, they were given the title ‘Bridge People’. Bridge People have different backgrounds: family and friends, public sector workers and staff from community‐based Chinese organisations. The defining attributes of these supporters were: bilinguality, bicultural, multifunctionality and accessibility. There is no charge for this support; and the relationship between the Bridge Person and recipient involves trust and influence over decisions regarding use of health and care services. Bridge People should be recognised and identified by health, social care and housing services to promote engagement and use of services by older immigrant Chinese people.     

Primary health and social care services in the UK: progress towards partnership?

There has been a shift in the theoretical debates around the ways in which organisations deliver the state's objectives of providing health and social care services for its citizens, focusing on issues of welfare governance and the encouragement of partnership working between organisations. This article develops these theories by focusing on developments in primary health and social care policy in the UK, which have undergone a radical change recently. Responsibility for commissioning health care services now falls to primary care groups and trusts (PCG/Ts), run by general practitioners, other primary care practitioners, managers and lay members, and there is some pressure on primary care groups and primary care trusts to engage in partnership working with social services, for example, to cut hospital waiting lists or provide intermediate care services. One policy option is for these organisations to form Care Trusts, integrating the commissioning of health and social care for older people and ending the historical organisational divisions between health and social care in the UK. This paper examines evidence from the first stage of a 3-year longitudinal quantitative and qualitative study of the development of partnership working between PCG/Ts and social services departments in England. It examines whether the evidence suggests that the integration of health and social care is feasible or desirable in older people's services.     

Who uses welfare benefits advice services in primary care?

There is considerable interest among organisations such as primary care trusts and health action zones in commissioning welfare benefits advice services in primary healthcare settings as part of local strategies to reduce health inequalities. However, very little is known about the contribution to health of such services or about the health status of those who use them. The present study reports on a longitudinal study of the contribution to individual health of welfare benefits advice in primary care that has gathered baseline demographic and health data on 345 research subjects. The average age of the subjects was 54 years, and they were likely to be unemployed or retired. Over 85% were advised to apply for welfare benefits or to appeal against the loss of a benefit, the most common benefit being Disability Living Allowance (over 50% of all subjects). Three-quarters reported a physical disability or long-term illness that limited their daily activity, and over half reported arthritis or rheumatism. Scores on the short form 36 (SF-36) which quantify self-reported physical and psychosocial aspects of health, were much lower than population norms, indicating poorer health. The burden of illness borne by users of these services is not surprising. However, reliable data has not previously been available. It appears that primary care provides good access to advice services for people in middle and old age, but not to other groups (e.g. families with young children, substance misusers or those with mental health problems). Better data collection by advice services, wherever located, would strengthen their understanding of the needs of those whom they serve, and help them to identify under-served groups. These data could be used to support requests for continued or extended funding.     

Making informed choices in social care: the importance of accessible information

The current policy trend is to encourage greater choice in the use of welfare services. To make informed choices, people need information. The process of finding and using information has costs for individuals in terms of effort, time and material resources. These costs are different for different people and impact on their use of information in different ways. Thus, the accessibility of information is important in ensuring those people who need to make choices can do so in an informed way. This paper discusses the importance of information in making informed choices about social support by drawing on the findings of a scoping review of government research and development activity on the accessibility of information about adult social care services. The scoping review was carried out in spring 2006. Details of recent, current and planned projects were obtained through discussions with staff in government departments, government agencies and other related organisations identified using a snowballing technique. Forty-two contacts were made. Eleven research and 36 development projects were identified that aimed to investigate or improve the accessibility of information about social care services. A limited literature search was undertaken on information needs in areas not already under investigation by government. Eighteen articles were identified. Information and helpline staff from six voluntary organisations gave their views on the accessibility of information about social care services. Our findings show that there is no government-related or other recent research evidence on the specific information access needs for some user groups and services, for example, people from ethnic minority groups. For other user groups, such as people with chaotic lifestyles, there is evidence on information needs but no current or planned development projects to address these needs. The implications for the costs of finding and processing information to aid informed choices are discussed.     

Snapshot of flexible funding outcomes in four countries

This article reviews social participation outcomes identified in discrete studies of flexible funding programmes across four countries. The outcomes of an Australian flexible funding support programme were studied in 2007; a study tour of independent living programmes was conducted in England and Scotland during 2005; Swedish co‐operatives and government administrators providing personal assistance to live independently were visited in 2006 and Australian independent living support groups operating for over 20 years were visited in 2008. Fifty‐six interviews were conducted with people with a disability, families, support services, government administrators and researchers. A structured interview schedule was used in the 2007 Australian study and a semi‐structured format was used in all other studies. Notes from the interviews were reviewed for themes related to social participation and their contributing factors. Ecological systems theory was used to identify what factors from the micro to the macro system level facilitated or hindered social participation. The key finding is that flexible funding did result in a range of social participation activities in each setting studied. The studies also indicate that social participation increases when people have access to information and support services; can choose their individual workers and move to a new agency if need be; and have adequate resources to meet their needs. The cultural and political context plays a large part in determining these factors. The implications of this study are that adequate resources are needed and the complex systems impacting on flexible funding need to be understood to achieve the intended outcomes.     

Evaluation of an integrated service delivering post diagnostic care and support for people living with dementia and their families

Greater integration of health and social care services is considered vital to ensure sustainable long‐term quality provision for the growing numbers of people living with dementia and their families. Integration of services is at the heart of government policy in England. We evaluated a new integrated service for post diagnostic dementia care, funded as a pilot and delivered through a partnership of statutory and voluntary sector health and social care organisations. The service used an adapted Admiral Nursing service model with a workforce of Admiral Nurses (ANs) and Dementia Advisers (DAs). A mixed method approach was used to assess implementation and outcomes. It involved collection of service activity data, carer reported experience survey data, focus group discussions and interviews with the service delivery team, and the management group. Qualitative data was analysed using a framework approach. About 37.8% of the eligible population registered with the service over the 14‐month pilot period. The self‐referral route accounted for the majority of referrals, and had enabled those not currently receiving specialist dementia care to engage with the service. Carer satisfaction surveys indicated high levels of satisfaction with the service. The caseload management system offered specific benefits. Individual caseloads ensured continuity of care while the integrated structure facilitated seamless transfer between or shared working across AN and DA caseloads. The skill mix facilitated development of the DA role increasing their potential contribution to dementia care. Challenges included managing large workloads and agreeing responsibilities across the skill mix of staff. This model of fully integrated service offers a novel approach to address the problems of fragmented provision by enabling joined‐up working across health and social care.     

Perceived inequalities in care and support for older women from Black and minority ethnic backgrounds in Wales: findings from a survey exploring dignity from service providers’ perspectives

ABSTRACT

Objective: As part of a large mixed-method study aimed at capturing understandings of dignity, and care expectations of community dwelling older women from Black and minority ethnic (BME) backgrounds living in Wales, the aim of this paper is to compare service providers’ perceptions of their care and support provided to older people in general, and to older women from BME backgrounds in particular, with a focus on two dignity indicators: care and support needs, and effective communication.

Design: A survey design was used.

Results: A total of 124 responses from service providers in Wales were received. Perceived inequalities in care and support were found. Although most respondents reported that care and support provision was generally acceptable, more respondents believed that compared to older people in general, older women from BME backgrounds were seldom or never offered opportunities and support to express their needs, were involved in their own care, were provided appropriate information, had their key needs especially less visible needs (psychological and religious needs) been taken into account, or were communicated with effectively (all p?<?0.05). In some cases, respondents tended to report more positively in areas related to their own practice.

Conclusion: We suggest that learning from the views and perceptions of service providers, as well as older people and their families, remains key to developing services for the UK's increasingly diverse and ageing population. A better understanding of how inequalities may occur, their impact on older people and their families, and how they may be minimised can inform the development of high quality care for older people regardless of their ethnic and cultural backgrounds in Wales, other parts of the UK and beyond.     

Do culturally sensitive services for Chinese in-patients make a difference?

Hospitals in large cities provide services to an increasingly diverse linguistic and cultural clientele. Some strategies adopted to improve services to non-English speaking populations include the use of bilingual social workers, interpreters and printed translation tools. In order to identify gaps in culturally sensitive care in a Canadian teaching hospital, this study surveyed a consecutive sample of 279 Chinese in-patients to determine satisfaction with hospital experience, levels of information about hospital routines and awareness of on-site Chinese cultural services. Results were generally positive. However, satisfaction and information levels were significantly higher among those patients who were aware of culturally appropriate Chinese resources such as social workers, cultural interpreters, and culturally specific reference tools. Of particular interest are the 121 patients (44%) who were less comfortable with English, since awareness of culturally specific resources tended to make a greater difference to this sub-group. These results can potentially help health care providers improve services to patients and families from diverse cultural and linguistic groups.     

Improving the nutritional status of older residents in care – new national minimum standards

Summary On 1st April 2002, national minimum standards for care homes for older people came into force in England and Wales ( Department of Health 2002 ). These were published in accordance with the Care Standards Act 2000 and replaced the Registered Homes Act of 1984. The Care Standards Act also created the National Care Standards Commission (NCSC), an independent non-governmental public body to regulate social and health care services (previously regulated by local councils and health authorities). Meeting the new standards is a core requirement for all care homes providing accommodation and nursing or personal care for older people and will form the basis on which the new NCSC will determine whether homes for older people meet the needs and secure the welfare and social inclusion of those who live in them. Several of the key topics highlighted in the Act relate explicitly to food and food provision (including health and personal care, daily life and social activities and staffing). For example, specifications are made about the type of food that is acceptable, when it should be eaten, the appropriate number of meals per day and their distribution throughout the day. This article outlines the main nutrition related issues in the new standards and highlights some available resources that may help care home owners to meet them.     

Service use and needs of people with motor neurone disease and their carers in Scotland

A national study of patients with motor neurone disease (MND) and their carers was conducted in Scotland in late 1996. A questionnaire covering areas such as: use of medical, social and voluntary services; use of or waiting for specialised equipment; satisfaction with provided services; and standard demographic data was used in face-to-face interviews conducted by the four Scottish Motor Neurone Disease Association care advisers. The care advisers also assessed the respondent's level of impairment, using a standard instrument: the Amyotrophic Lateral Sclerosis Severity Scale (ALSSS). The data was analysed using SPSS-PC. In total 153 people participated (response rate 92%), and as expected with this patient group the study recruited more men (57%) than women. Sixty per cent of the sample was severely disabled as measured on the ALSSS. Health services did not meet the needs of respondents in 19% of the cases and social services failed to do so according to 24% of respondents. Eighty per cent of patients with MND had an identified carer. Nearly four out of 10 of these carers had their sleep disturbed regularly, and nearly a quarter of them would have liked to have more help. In addition, differences were found in service provision between the East and West of Scotland, and consequently differences in respondent's perceptions about the extent to which needs were met. As found in similar studies, the formal health and social care sectors in conjunction with voluntary organisations are only partially managing the trajectory of patients with a rare progressive degenerative disease.     

Client satisfaction and quality of health care in rural Bangladesh.

OBJECTIVE: To assess user expectations and degree of client satisfaction and quality of health care provided in rural Bangladesh. METHODS: A total of 1913 persons chosen by systematic random sampling were successfully interviewed immediately after having received care in government health facilities. FINDINGS: The most powerful predictor for client satisfaction with the government services was provider behaviour, especially respect and politeness. For patients this aspect was much more important than the technical competence of the provider. Furthermore, a reduction in waiting time (on average to 30 min) was more important to clients than a prolongation of the quite short (from a medical standpoint) consultation time (on average 2 min, 22 sec), with 75% of clients being satisfied. Waiting time, which was about double at outreach services than that at fixed services, was the only element with which users of outreach services were dissatisfied. CONCLUSIONS: This study underscores that client satisfaction is determined by the cultural background of the people. It shows the dilemma that, though optimally care should be capable of meeting both medical and psychosocial needs, in reality care that meets all medical needs may fail to meet the client's emotional or social needs. Conversely, care that meets psychosocial needs may leave the clients medically at risk. It seems important that developing countries promoting client-oriented health services should carry out more in-depth research on the determinants of client satisfaction in the respective culture.     

The responsibility to care for single homeless people

This paper examines the reasons why in contemporary Britain many single homeless people with severe physical and mental health problems and welfare needs do not receive the treatment, care and financial support that they manifestly need, and in particular considers the interaction between their personal characteristics and the organisation and the obligations of services. Homelessness is a complex concept associated with problems of housing, health, social care and income. The greatest weaknesses of the service system are that no single agency has a statutory responsibility to ensure that vulnerable homeless people are served, and none of the generalist welfare agencies have a duty to seek out those who do not present. As a result, single homeless people fall between the housing, health and social services and amass exceptional unmet needs. The paper appraises the approaches to single homeless people's problems that have recently been introduced by the Rough Sleepers' Unit (RSU), and discusses the ways in which current reforms of the welfare services may impact on the situation of homeless people. With the possibility that the RSU's prime responsibility for commissioning single homeless people's services will transfer to local authorities in 2002, the paper concludes by specifying the implications for voluntary and statutory providers and makes recommendations about the attribution of the responsibility to care for this vulnerable group.     

‘If they’re helping me then how can I be independent?’ The perceptions and experience of users of home‐care re‐ablement services

Home‐care re‐ablement is a short‐term, intensive service that helps people to (re‐) establish their capacity and confidence in performing basic personal care and domestic tasks at home, thereby reducing needs for longer term help. Home‐care re‐ablement is an increasingly common feature of English adult social care services; there are similar service developments in Australia and New Zealand. This paper presents evidence from semi‐structured interviews conducted in early 2010 with 34 service users and 10 carers from five established re‐ablement services in England. The interviews formed part of a larger, mixed‐methods study into the immediate and longer term impacts and cost‐effectiveness of home‐care re‐ablement services. There was clear evidence that interviewees felt that they had benefitted from re‐ablement services; most service users and their families valued the intervention. However, the interviews also identified potential barriers to optimal independence for some service users, particularly those with progressive conditions, sensory impairments, specific cultural needs, or who lived alone. The beneficial impacts of re‐ablement could also be reduced if users failed to understand the aims of the service, or if the service failed to provide support with activities or outcomes that were particularly important to the service user or carer. Putting the lived experiences of people receiving re‐ablement at the centre of analysis, this paper concludes that re‐ablement services have the potential for enhanced effectiveness, particularly if there is more understanding of users’ own priorities and concepts of independence.