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.     

Meeting the health needs of older people with intellectual disabilities: exploring the experiences of residential social care staff

Older people with intellectual disabilities often experience high levels of health needs and multiple morbidities but they may be supported by residential care staff with little or no previous experience of identifying and meeting health needs. Little is known regarding how they undertake this health‐related role and this exploratory study seeks to address this gap. A purposive sample of 14 managers of supported living accommodation in Wales were interviewed in 2014 to determine their experiences of supporting tenants in relation to age‐related health needs. The semi‐structured interviews were transcribed and thematically analysed. Three of the emerging themes are reported in this paper: meeting health needs, the consequences of ageing and relationships. Findings indicate that residential care staff support older people with intellectual disabilities with complex and multiple health needs: they monitor health status, support access to healthcare, provide additional support arising from changing health needs and advocate for tenants in the context of healthcare. However, their role is often not understood by healthcare professionals. The importance of staff having a long‐term relationship with those they support was identified as being important to identifying any health‐related changes. The need to develop effective relationships with healthcare staff was also noted. It is concluded that there is a need for better understanding among health staff of the role of residential social care workers and for further research regarding health‐related communication.     

Assessing and managing risk with people with physical disabilities: the development of a safety checklist

Assessing risk with adults with physical disabilities who receive social care services is a task at the confluence of three perspectives on risk: the rights and choices of clients, the role and task of the social worker and the responsibilities of the service provider organisation in managing risk. The purpose of this article is to articulate and contextualise some of these issues of risk and risk-taking when people receive social care services. The tensions between client concerns and organisational risk management perspectives are illustrated by drawing on a project to engage clients in jointly assessing their risks with social workers, undertaken with teams in the Physical Health and Disability Programme of Care in a Health and Social Care Trust in Northern Ireland in 2010. In this article, we show how a risk discourse can be a useful aspect of the dealings between social workers and clients, whilst locating this within the risk regulation framework for managing risk within which health and social care services operate. We argue that incorporating both client perceptions of risk-taking and organisational risk management provides a balanced approach more likely to be effective than championing one at the expense of the other.     

The contribution of physical and social activity participation to social support and happiness among people with physical disabilities

BackgroundPrior studies have suggested that certain leisure activities provide health benefits to people with physical disabilities. Participation in social activities has been identified as a strong predictor of active coping strategies and social support from others. In addition, leisure-time physical activity (LTPA) has been found to be positively associated with health perceptions and quality of life.ObjectivesThe purpose of this study was to investigate the relationships between social activity and LTPA to social support and life satisfaction among people with physical disabilities.MethodsData were collected from Korean Association of Persons with Physical Disabilities. A total of 351 surveys were used.ResultsResults indicated that social activity, emotional and informational support, and tangible and affectionate support were significantly associated with happiness. However, there were no direct effects of LTPA and positive social interaction support on happiness. The study results showed significant direct effects of LTPA on emotional and informational support and positive social interaction.ConclusionThis study shows that it is important for people with physical disabilities not only to participate in LTPA, but also to be provided with opportunities for social activities. In particular, the importance of social activity to Korean people with physical disabilities as a means of receiving social support and increasing happiness was confirmed. The results suggest that practitioners need to create a variety of social activity opportunities, such as online social participation programs, community-based social programs, and social events for health.     

Satisfaction with primary care: the perspectives of people with schizophrenia

BACKGROUND: Schizophrenia affects up to 1% of the population in the UK. People with schizophrenia use the National Health Service frequently and over a long period of time. However, their views on satisfaction with primary care are rarely sought. OBJECTIVES: This study aimed to explore the elements of satisfaction with primary care for people with schizophrenia. METHOD: A primary care-based study was carried out using semi-structured interviews with 45 patients with schizophrenia receiving shared care with the Northern Birmingham Mental Health Trust between 1999 and 2000. RESULTS: Five major themes that affect satisfaction emerged from the data: the exceptional potential of the consultation itself; the importance of aspects of the organization of primary care; the construction of the user in the doctor-patient relationship; the influence of stereotypes on GP behaviour; and the importance of hope for recovery. CONCLUSION: Satisfaction with primary care is multiply mediated. It is also rarely expected or achieved by this group of patients. There is a significant gap between the rhetoric and the reality of user involvement in primary care consultations. Acknowledging the tensions between societal and GP views of schizophrenia as an incurable life sentence and the importance to patients of hope for recovery is likely to lead to greater satisfaction with primary health care for people with schizophrenia.     

Portfolio of health advice for young people with disabilities transferring to adult care

BACKGROUND: The transition from paediatric to adult services for young people with complex disabilities is fraught with anxieties for families. To facilitate the transition process a portfolio comprising reports from parents, paediatrician and therapists was collected and given to the young person and family on leaving school. AIM: To evaluate the young people and their parents' views of the usefulness of portfolios in providing comprehensive picture of their health needs. METHODS: A prospective study was performed. Eight families were interviewed and semi-quantitative feedback obtained using standardized questionnaires. RESULTS: Seven out of eight young people and their families were satisfied with the portfolios they received. All of them found the portfolios worthwhile and useful. A quarter of the families would like to have been consulted more about the content of the individual reports. CONCLUSIONS: Portfolios of health reports facilitate transfer of information when young people with disabilities move from paediatric to adult services. Ideally portfolios should be interagency, and include reports from education and social services.     

De-institutionalization and ageing: some results from monitoring the effects in an area-based system of long-term care for elderly people and people with disabilities

This paper illustrates the usefulness of regular monitoring for an area-based system of long-term care for elderly people and people with a disability by presenting data which describe the combined effects of de-institutionalization and population ageing. Data were collected between 1985 and 1989 in Solna, Sweden by means of annual surveys involving registraion of received services and assessment of needs and disability. The sample, (n=2026 year 1, n=1755 year 5), were all the residents of Solna, who, on the day of the survey, were in receipt of long-term public medical and/or social services care from the public sector. Data were collected on demographic variables, actual and appropriate levels of care. The class of disability was based upon five different measures of disability. The number of long-term care hospital and nursing home beds were reduced by 23% whilst the number of people aged over 85 in the area increased by 31%. This development had effects on all levels of care. Actual development of resources fell short of those projected according to population trends, by 15–35% depending on level of care. The proportion of clients, who were ‘under-served’, in the sense that they received a lower level of care than assessed as appropriate by the responsible staff, more than doubled during the period-increasing from 10(n=2026) to 21% (n=1755). Domiciliary services were actually reduced and concentrated on fewer clients with more severe disabilities. There was a general increase in the prevalence and severity of disability in all levels of care except sheltered housing. Incontinence showed the most rapid increase. The findings of this study demonstrate the importance of providing decision-makers with quantitative data which reflect trends in population needs.     

中国肢体残疾人口预期寿命研究

目的 估算中国肢体残疾人口预期寿命.方法 基于2007-2010年监测肢体残疾人口平均死亡率,使用生命表方法 估算不同特征人口预期寿命及其标准误(s-x).结果 (1)肢体残疾人口女性预期寿命高于男性,女性和男性0岁预期寿命分别是63岁(s-x=2.6)和55岁(s-x=3.1);(2)35～50岁人口预期寿命城镇高于农村;(3)轻度肢体残疾人口预期寿命高于重度残疾人口,0岁预期寿命分别为62.5岁(s-x=2.4)和42岁(s-x=5.4);(4)肢体残疾人口预期寿命低于中国普通人群,男性和女性0岁预期寿命差距分别为17.1岁和12.7岁.结论 中国肢体残疾人口死亡水平较高,需要采取措施提高其预期寿命.

Abstract：

Objective To estimate the life expectancy of persons with physical disabilities in China based on data related to representative national disability.Methods Life table technique was used to estimate the life expectancy and its standard error by various characteristics on the basis of average mortality rates from the monitoring cases during 2007-2010.Results (1)Females were expected to live longer than males.The life expectancy at birth for females was 63 years with standard error(SE)=2.6 while for males it was 55 years(SE=3.1).(2)Persons aged 35-50 in urban areas had higher life expectancy than those in rural areas.(3)Life expectancy of persons with mild disability [62.5 years(SE=2.4)] was higher than that of persons with severe disability[42 years(SE=5.4)].(4)Life expectancies of persons with physical disability were much lower than that of the Chinese general population.Gaps of male and female life expectancy at birth were 17.1 years and 12.7 years,respectively.Conclusion Persons with physical disability had higher mortality and actions should be taken to improve their life expectancy,accordingly.     

Good practice in social care: the views of people with severe and complex needs and those who support them

This paper reports findings drawn from a study of good practice in English social care for adults with disability and older people with severe and complex needs. People with severe and complex needs are a relatively small proportion of adult social care service users, but they are growing in numbers and have resource‐intensive needs. The study involved qualitative research with adults with disability and older people with severe and complex needs, family carers and members of specialist organisations (n = 67), focusing on the features of social care services they considered to be good practice. Data were collected between August 2010 and June 2011. The approach to data collection was flexible, to accommodate participants' communication needs and preferences, including face‐to‐face and telephone interviews, Talking Mats^© sessions and a focus group. Data were managed using Framework and analysed thematically. Features of good practice were considered at three levels: (i) everyday support; (ii) service organisation; and (iii) commissioning. Findings relating to the first two of these are presented here. Participants emphasised the importance of person‐centred ways of working at all levels. Personalisation, as currently implemented in English social care, aims to shift power from professionals to service users through the allocation of personal budgets. This approach focuses very much on the role of the individual in directing his/her own support arrangements. However, participants in this study also stressed the importance of ongoing professional support, for example, from a specialist key worker or case manager to co‐ordinate diverse services and ensure good practice at an organisational level. The paper argues that, despite the recent move to shift power from professionals to service users, people with the most complex needs still value support from professionals and appropriate organisational support. Without these, they risk being excluded from the benefits that personalisation, properly supported, could yield.     

Reconciliation of work and care among lone mothers of adults with intellectual disabilities: the role and limits of care capital

In this study, the concept of social capital is applied to an exploration of Guanxi (social networking to create good relationships) among working lone mothers of adults with intellectual disabilities (ID) in Taiwan. Using in‐depth interviews, this study explores the role of social capital, here referred to as ‘care capital’, in making it possible for working lone mothers to combine their roles as family carers and workers. Eleven divorced or widowed mothers combining their paid work with long‐term care responsibilities were recruited from a survey or through NGOs and were interviewed at their home between October 2008 and July 2010. An interpretative phenomenological approach was adopted for data analysis. The findings revealed that the mothers’ care capital was extremely limited and was lost, gained and lost again during their life‐cycles of long‐term care‐giving. Guanxi, especially in relation to their employers, proved to be the sole source of care capital for these mothers, making reconciliation between work and care responsibilities possible. In the absence of formal or informal support, religion and the mother–child relationship seemed also to become a kind of care capital for these lone mothers, helping them to get by with their life‐long care responsibilities. For formal social and healthcare services, not just in Taiwan but in every country, it is important to develop support for lone mothers of adults with ID who have long‐term care responsibilities and low levels of care capital and thus face care poverty.     

Barriers and strategies affecting the utilisation of primary preventive services for people with physical disabilities: a qualitative inquiry

Individuals with physical disabilities are less likely to utilise primary preventive healthcare services than the general population. At the same time they are at greater risk for secondary conditions and as likely as the general population to engage in health risk behaviours. This qualitative exploratory study had two principal objectives: (1) to investigate access barriers to obtaining preventive healthcare services for adults with physical disabilities and (2) to identify strategies to increase access to these services. We conducted five focus group interviews with adults (median age: 46) with various physically disabling conditions. Most participants were male Caucasians residing in Virginia, USA. Study participants reported a variety of barriers that prevented them from receiving the primary preventive services commonly recommended by the US Preventive Services Task Force. We used a health services framework to distinguish structural-environmental (to include inaccessible facilities and examination equipment) or process barriers (to include a lack of disability-related provider knowledge, respect, and skilled assistance during office visits). Participants suggested a range of strategies to address these barriers including disability-specific continuing education for providers, the development of accessible prevention-focused information portals for people with physical disabilities, and consumer self-education, and assertiveness in requesting recommended services. Study findings point to the need for a more responsive healthcare system to effectively meet the primary prevention needs of people with physical disabilities. The authors propose the development of a consumer- and provider-focused resource and information kit that reflects the strategies that were suggested by study participants.     

Personalised social care for adults with disabilities: a problematic concept for frontline practice

This paper explores the complexities and contradictions of frontline practice that pose problems for personalised social care through enhanced choice. It draws on semi-structured interviews with community care workers, social workers, occupational therapists and care managers in a social service department. Practitioners interviewed were asked about their current assessment and documentation system, including the assessment documents currently used; how they approached information gathering and the topics they explored with service users; and their experience of documenting assessment and care management. The paper argues that the validity and sustainability of personalised social care in frontline practice relies on developing a thorough understanding of the complex and implicit assessment processes operating at the service user/practitioner interface and the inevitable tensions that arise for practitioners associated with the organisational context and broader service environment. The findings demonstrate the variability among practitioners in how they collect information and more importantly, the critical role practitioners occupy in determining the kinds of topics to be explored during the assessment process. In so doing, it shows how practitioners can exert control over the decision-making process. More importantly, it provides some insight into how such processes are shaped by the constraints of the organisational context and broader service environment. Complexities and contradictions may be an inherent part of frontline practice. The issues discussed in this paper, however, highlight potential areas that might be targeted in conjunction with implementing personalised social care through enhanced choice for people with disabilities.     

Problems with measuring satisfaction with social care

The measurement of customer satisfaction has become widespread in both healthcare and social care services, and is informative for performance monitoring and service development. Satisfaction with social care services is routinely measured with a single question on overall satisfaction with care, comprising part of the Adult Social Care Survey. The measurement of satisfaction has been problematised, and existing satisfaction measures are known to be under‐theorised. In this article, the process of making an evaluation of satisfaction with social care services is first informed by a literature review of the theoretical background, and second examined through qualitative interviews conducted in 2012–2013 with 82 service users and family carers in Hampshire, Portsmouth and Southampton. Participants in this study were from white British and South Asian backgrounds, and the influence of ethnicity in the process of satisfaction evaluation is discussed. The findings show that the majority of participants selected a positive satisfaction rating even though both positive and negative experiences with services were described in their narratives. It is recommended that surveys provide opportunity for service users and family carers to elaborate on their satisfaction ratings. This addition will provide more scope for services to review their strengths and weaknesses.     

Sexual esteem,sexual satisfaction,and sexual behavior among people with physical disability

This study investigated the association between the severity and duration of physical disability and sexual esteem, sexual depression, sexual satisfaction, and the frequency of sexual behavior. A total of 1,196 participants completed the study. There were 748 participants (367 males, 381 females) who had a physical disability and 448 participants (171 males, 277 females) who were able-bodied. The age range of participants was 18–69 years, with a mean age of 36.39 years (SD = 10.41). The results demonstrated that people with more severe physical impairments experienced significantly lower levels of sexual esteem and sexual satisfaction and significantly higher levels of sexual depression than people who had mild impairments or who did not report having a physical impairment. The study also found that people with more severe physical disabilities engaged in mutual sexual activity significantly less frequently. Women with physical disabilities had significantly more positive feelings about their sexuality and significantly more frequent mutual sexual experiences than their male counterparts. For people with physical disabilities, the frequency of oral sex and nude cuddling were significant predictors of sexual satisfaction in men, while the frequency of deep kissing predicted sexual satisfaction in women. Furthermore, the viewing of erotica was significantly related to sexual dissatisfaction in men. Finally, it was found that people who had experienced their physical impairment for a longer period of time reported significantly more positive feelings about their sexuality. Implications of these findings are discussed and suggestions are made for future research.     

Satisfaction with quality and access to health care among people with disabling conditions.

OBJECTIVE: To compare satisfaction with health care between persons with and without disabling conditions. DESIGN: Responses to 1996 Medicare Current Beneficiary Survey. SETTING: Nationally representative of the United States population. STUDY PARTICIPANTS: Community-dwelling Medicare beneficiaries, older and younger than 65 years (n = 16 403). MAIN OUTCOME MEASURE: Adjusted odds of being dissatisfied or very dissatisfied with five general quality measures and five access-to-care measures by five disabling conditions (blind or low vision, deaf or hard of hearing, difficulty walking, difficulty reaching, manual dexterity difficulties). Multivariable logistic regressions on dissatisfaction adjusted for age group, sex, disabling condition, race, ethnicity, urban versus rural residence, education, household income < $25 000 versus > or = $25 000, having a usual source of care, proxy respondent, and managed care. RESULTS: Of an estimated 33.58 million non-institutionalized Medicare beneficiaries, 64.1% (estimated 21.51 million) reported at least one disabling condition. Among younger beneficiaries, 10.4% with any major disability were dissatisfied with their care overall, as were 4.6% without disabilities. Nevertheless, persons with disabilities generally had significantly higher adjusted odds of dissatisfaction. For elderly persons with any major disability, the adjusted odds ratios (95% confidence interval) of dissatisfaction were: 3.2 (2.4-4.3) for overall quality; 3.2 (2.2-4.6) for access to specialists; 4.4 (3.1-6.4) for follow-up; and 4.2 (3.1-5.7) for ease of getting to doctors. Elderly managed care enrollees were less satisfied with access to specialists, but more satisfied with costs. CONCLUSION: The quality domains generating the greatest dissatisfaction were anticipated, given the nature of disabling conditions. Improving these areas requires attention inside and outside the health care system. Redesigning practice settings and procedures, and changing payment policies offer the only solutions to some problems.     

Carers' experiences of hospital discharge and continuing care in the community

This paper presents the findings of a study of carers' perspectives on discharge procedures and continuing care arrangements for adults aged 18–65 with physical and complex disabilities. Interviews were conducted with carers of people discharged from younger disabled units (YDUs) and hospital settings. The emphasis carers place on the need to be informed and involved in the discharge planning process is described, and the adequacy of continuing care arrangements from carers' perspectives is examined. The findings of the study raise issues for policy and practice about carers' needs, vis-à-vis patients, to be included as active participants in the discharge planning process.     

Sexuality in women with physical disabilities: A social justice or health issue?

The negative attitudes that exist regarding sexuality in women with disabilities are discussed. The major justifications given for such attitudes seem to run contrary to social justice principles and, in fact, invariably have severe health implications for such women. It is concluded that women with disabilities need to be wary of aligning themselves exclusively with either the women's movement or the disability movement as either option could lead to forced and disempowering compromises and consequences.     

The influence of ICT on the activity patterns of children with physical disabilities outside school

Aim To investigate the outside school activity patterns of children with physical disabilities, and specifically their information and communication technology (ICT) usage compared with that of non‐disabled children. In addition, the aim was to investigate the children's opinions on computer use and the associations between their use of the Internet and their interaction with peers. Methods Questionnaire on activities outside school, answered by 215 children and youths with physical disabilities, mean age 12 years 10 months, attending mainstream schools. For group comparisons with non‐disabled children, data from the survey ‘Kids and Media’ were used. Results In the analysis, two sets of activity patterns were identified, depending on whether the child was disabled or not and on the gender of the child. A higher proportion of children with physical disabilities were engaged in ICT activities, while non‐disabled children tended to be engaged in a broader range of activities outside school. The activity pattern was more uniform for boys and girls with disabilities than for their non‐disabled peers. Use of the Internet was positively associated with peer interaction. Conclusion Outside school, the activity patterns of children and youths with physical disabilities seem to be characterized by a focus on ICT activities, which enable children to compensate for their impairment because it suits all. In addition, digital skills developed outside school engage children with physical disabilities, giving them increased access to society and for educational purposes.     

Satisfaction with the care-managed support of older people: an empirical analysis

Modernising Social Services requires the use of satisfaction surveys in monitoring some key aspects of quality of provision, including user/carer perceptions and experiences of services and involvement of users/carers in assessment and review. Using data from the study Evaluating Community Care for Elderly People (ECCEP), of physically and/or mentally frail community-based older people in England and Wales receiving community care services, this investigation examines three crucial aspects of user satisfaction. The measures were: initial satisfaction with the assessment process and help provided by social services; also two measures obtained from a six month follow-up, namely satisfaction with service levels and with the experience of social services. Examination of overall satisfaction levels provided only a partial picture, due to their association with both user characteristics and the effect of life satisfaction. This association was therefore examined firstly by considering each characteristic separately and secondly by modelling the presence of each satisfaction measure in terms of those characteristics having a significant effect, using logistic regression. Arthritis, loneliness, problems keeping warm and an inner city location were all characteristics associated with reduced satisfaction, while most resource inputs, including social work involvement, were positively related to satisfaction. General life satisfaction was also associated with increased satisfaction levels. The role of life satisfaction as a predictor was further investigated through examining its dependence on case characteristics. While older users were more frequently satisfied with life, those with greater functional impairment and below average self-perceived health reported lower life satisfaction. Findings from this study highlight the complexity of interpreting satisfaction data and suggest that those responsible for designing and conducting surveys need to be aware of both the potential and pitfalls associated with using them as a means of assessing the quality of social services for older people.