Rosalind Willis

Reported stigma and discrimination by people with a diagnosis of schizophrenia

Aims. This article examines the extent of stigma and discrimination as reported by people with a diagnosis of schizophrenia. The hypothesis is that when people express in their own words the discrimination they experience such discrimination will be found to be widespread. Methods. Seventy-five people with a diagnosis of schizophrenia from 15 different countries were interviewed with a mixed methods instrument to assess reported discrimination. The data were analysed for frequency counts and then a thematic analysis was performed. A conceptual map is provided. Results. The study was a cross-cultural one but, contrary to expectations, few transnational differences were found. The main hypothesis was supported. Conversely, we found that when participants reported ‘positive discrimination’, this could as easily be conceptualised as being treated similarly to how others in society would expect to be treated. Conclusion. Negative discrimination is ubiquitous and sometimes connotatively very strong, with reports of humiliation and abuse. ‘Positive discrimination’ conversely indicates that people with a mental illness diagnosis expect discrimination and are grateful when it does not occur. The literature on self-stigma is discussed and found wanting. Similarly, the theory that contact with mentally ill people reduces stigma and discrimination is not fully supported by our results.

Measuring unmet need for social care amongst older people

Recent spending cuts in the area of adult social care raise policy concerns about the proportion of older people whose need for social care is not being met. Such concerns are emphasised in the context of population ageing and other demographic changes. For example, the increasing proportion of the population aged 75 and over places greater pressure on formal and informal systems of care and support provision, while changes in the living arrangements of older people may affect the supply of informal care within the household. This article explores the concept of ‘unmet need’ for support in relation to specific Activities of Daily Living (ADLs) and Instrumental Activities of Daily Living (IADLs), using data on the receipt of support (informal, formal state or formal paid) from the General Household Survey, the English Longitudinal Study of Ageing and the British Household Panel Survey. The results show that different kinds of need tend to be supported by particular sources of care, and that there is a significant level of ‘unmet need’ for certain activities.

People with dementia and their family carers' satisfaction with a memory service: a qualitative evaluation generating quality indicators for dementia care

Background: UK health policy requires the early identification and management of dementia. There are few good quality evaluations of models of care in dementia with a particular lack of data from user and carer perspectives. The Croydon Memory Service Model (CMSM) was developed to identify and treat people in the early stages of dementia and its evaluation includes an assessment of service satisfaction. Aim: To complete a qualitative investigation into the satisfaction with the service of those assessed and treated using the CMSM. Method: The CMSM was the subject of a multi-method evaluation, as part of this, semi-structured qualitative interviews were carried out with 16 people with dementia and 15 family carers to establish their opinions of the service. Purposive sampling was used to identify participants with a range of diagnosis, ethnicity, and age. Conventional Content Analysis was used to analyse the data. Results: Six themes concerning satisfaction emerged from the data: initial experience of dementia; service experience; helpful interventions; normalizing the catastrophic; clear communication; and gaps in service. Peer support and clear communication were seen as valuable assets provided by the service, allowing participants to use coping strategies which normalized having dementia. Conclusions: From these data we can derive seven quality indicators with which to judge services for people with dementia: (i) provision of broad-based care as well as assessment; (ii) clear communication about diagnosis and care; (iii) continuing peer support groups; (iv) easy availability of staff; (v) professional staff behaviour; (vi) the service working for people with young-onset dementia and their carers; (vii) strategies to manage those with subjective memory impairment but no objective deficits.

Individualism, Collectivism and Ethnic Identity: Cultural Assumptions in Accounting for Caregiving Behaviour in Britain

Britain is experiencing the ageing of a large number of minority ethnic groups for the first time in its history, due to the post-war migration of people from the Caribbean and the Indian subcontinent. Stereotypes about a high level of provision of informal caregiving among minority ethnic groups are common in Britain, as in the US, despite quantitative studies refuting this assumption. This paper reports on a qualitative analysis of in-depth interviews with older people from five different ethnic groups about their conceptualisation of their ethnic identity, and their attributions of motivations of caregiving within their own ethnic group and in other groups. It is argued that ethnic identity becomes salient after migration and becoming a part of an ethnic minority group in the new country. Therefore, White British people who have never migrated do not have a great sense of ethnic identity. Further, a strong sense of ethnic identity is linked with identifying with the collective rather than the individual, which explains why the White British participants gave an individualist account of their motivations for informal care, whereas the minority ethnic participants gave a collectivist account of their motivations of care. Crucially, members of all ethnic groups were providing or receiving informal care, so it was the attribution and not the behaviour which differed.

The Stroud/ADI dementia quality framework: a cross-national population-level framework for assessing the quality of life impacts of services and policies for people with dementia and their family carers.

To generate an internationally applicable framework for the systematic assessment of the quality of life impacts of services and policies for people with dementia and their family carers.

Advantageous inequality or disadvantageous equality? Ethnicity and family support among older people in Britain

There is a popular perception that particular ethnic groups have a stronger sense of filial responsibility than is found in Western European societies, which has led to a belief that formal services are not required by minority groups. However, it has been suggested that some minority ethnic older people are actually in greater need of support, because of factors such as poorer health and lower socio‐economic status, than the white majority in Britain. Employing data from the 2005 Home Office Citizenship Survey, ethnic group differences in help given to family members are examined. Contrary to prevailing assumptions, there was only one ethnic group difference; black Caribbean older people had significantly lower odds than white British people of supporting members of their household. Support was equally likely among all other minority groups and the white British group, providing nationally representative evidence for an idea only previously speculated upon.

Ethnicity as a Determining Factor for Instrumental Support in Mid and Later Life in England and Wales

OBJECTIVES Minority ethnic groups are often assumed to exchange higher levels of informal support than the majority population, despite evidence that controlling for socioeconomic and health inequalities eliminates differences. Using a unique data set from England and Wales, we examined instrumental support across ethnic groups in mid and later life. METHOD Employing data from the Home Office Citizenship Survey 2005 (N = 14,081), we investigated ethnic group differences in instrumental support among people aged 55 and older in England and Wales (n = 4,710). Multiple logistic regression was used to investigate the determinants of support given and received, guided by the Andersen-Newman behavioral model. RESULTS Compared with the White British group, the Indian group reported significantly higher odds (odds ratio [OR] = 2.2, 95% confidence interval [CI] 1.0-4.7) of receiving instrumental support from household members but significantly lower odds of giving support to relatives outside the household (OR = 0.7, 95% CI 0.5-0.9). Three other ethnic groups (Pakistani and Bangladeshi, Mixed, Other) reported significantly lower odds in unadjusted findings, but when adjusted, ethnic group differences were no longer significant. DISCUSSION Our analyses suggest few ethnic group differences in instrumental support once need and enabling factors were taken into account. Such findings are contrary to the belief that minority groups exchange more informal support and therefore have less need for formal services. The Andersen-Newman model is useful for guiding the analysis of support both given and received.

Using system dynamics to model the social care system: simulation modeling as the catalyst in linking demography to care delivery

This paper describes a system dynamics model for social care, developed in collaboration with a local authority in England, as part of the UK Engineering and Physical Sciences Research Council Care Life Cycle project based at the University of Southampton. The model was populated with data from a wide range of sources, local and national. We present some illustrative results, and discuss the process of model development and the challenges around data collection. We also discuss the benefits derived from co-developing such a model with practitioner users and as part of a multi-disciplinary team involving demographers and social statisticians.

How do we measure unmet need for social care in later life

Studies addressing multiple morbid conditions in elderlypopulations usually focus on disease and physiological indicatorsrelevant for the medical care system. Few studies include bothmedical and fu ...The UK’s population is ageing, and understanding the dynamics of living arrangements in later life and the implications for the provision and funding of appropriate housing and long-term care is critical given the current economic climate which can have an adverse impact on state support for older people. This paper investigates the dynamics of living arrangements amongst people aged 65 years old and over between 1991 and 2008, focussing on the two key housing and care pathways in later life: moving into sheltered accommodation and moving into residential care. The empirical research examines the rates of moving into sheltered accommodation and institutional care and investigates the determinants and probabilities of these transitions in the UK. The paper employs all 18 waves of the British Household Panel Survey data (1991-2008) and uses a discrete-time logistic regression model in order to model the probability of entering sheltered accommodation and residential care. After reading this poster, participants will be able to associate specific factors with each of the two transitions in later life. For example age, health and marital status are significant determinants of a move into residential care, while the move into sheltered accommodation is also associated with housing tenure and education. After reading this poster, participants will be able to discuss the prevalence of each the two kinds of transition at different stages of the latter part of the life course, and to understand the crucial implications for the design of social care provision for older people in the future.This pilot project aimed to try something different - rekindle positive memories of swimming in people with dementia who enjoyed swimming throughout their lives, and involve them in active swimming again using a swimming club intervention. Club members were recruited from two residential aged care facilities in Queensland, Australia (n=25 recruited, n=18 commenced, n=11 (median age=88.4, IQR=12.3; 1 male) completed the intervention). The 12 week program consisted of two, 45 minute sessions per week held at a municipal pool, using a trained instructor and assistants. Measures, taken at baseline, Week 6, Week 9 and post intervention included psychosocial and physical assessments such as the Revised Memory and Behavior Problems Checklist, Psychological Well-Being in Cognitively Impaired Persons, Seniors Physical Performance Battery and bioelectric impedance analysis. Stakeholder focus groups determined the barriers and facilitators for the club. Three outcomes have been achieved: 1) the development of a dementia specific, evidence-based, aquatic exercise program. This valuable resource will ensure that the benefits will be maximized with tailored exercises for strength, agility, flexibility, balance, relaxation and stress reduction, 2) improved quality of life for members, with statistically significant improvements in psychological wellbeing (χ2 =8.66, p<0.05), BPSD expression (χ2=16.91, p=0.001) and staff distress (χ2=16.86, p=0.001) and 3) an informative website with instructional video clips and a manual to assist others in implementing and maintaining a Watermemories Swimming Club. This pilot project has provided strong evidence that aquatic exercise can produce positive physical, psychosocial and behavioral outcomes for people with dementia.

Advice for supervising PhD students during the ethical approval process: a research student’s perspective

This paper provides advice for the supervision of PhD students during the research ethics approval process written from the perspective of a PhD student. This advice is for supervisors – to be aware of the level of experience their student has regarding applying for ethical approval and conducting research with human participants; to ensure clarity as to whether the student or the supervisor has responsibility for the ethical storage of research materials after the end of the PhD; and finally, and most important, to advise the student on the issues to cover in their ethics approval form, go through their completed form thoroughly, and meet them to discuss feedback.