Who will care for older people? A case study of working with destructiveness and despair in long-stay care

Abstract

The reduction of services for older people is illustrated in a case study of a long-stay NHS service which has been transferred to a private, profit-making company. The effects of cuts in this service are most keenly felt in the very poor conditions of employment now offered by the company to new carers. Other illustrations of cuts are described in attempts to make savings on food or incontinence pads. The difficulties for staff, patients, their relatives, or indeed society at large, in challenging such destructiveness, may be understood in terms of the particular vulnerability of older people to projections of a dreaded infantile dependency and helplessness, in a society in the grip of a destructive narcissism which views ordinary human needs as a weakness.     

A cognitive-behavioral plus exercise intervention for older adults with chronic back pain: race/ethnicity effect?

This pilot study examined the feasibility and potential efficacy of a self-management program for seniors with chronic back pain and assessed for possible race/ethnicity differences in program impact. Sixty-nine seniors (24 African Americans, 25 Hispanics, and 20 non-Hispanic Whites) enrolled in the 8-wk community-based program. Efficacy outcomes included pain-related disability as measured by the Roland Morris Disability Questionnaire (RMDQ), pain intensity, pain self-efficacy, depressive symptoms, social activity, and functional status. Eighty percent of enrollees completed the program. Clinically important decreases in RMDQ scores were found for non-Hispanic White (adjusted change score = -3.53), African American (-3.89), and Hispanic (-8.45) participants. Improvements in all other outcomes were observed, but only for Hispanic participants. Results confirm that implementation of the protocol in urban senior centers is feasible, and the program shows potential efficacy. The race/ethnicity differences observed in the current study merit further investigation.     

How do they see themselves? Self-perception and functioning for people with chronic schizophrenia

In a supervised living situation, 15 individuals whose physical health was considered stable and who had diagnoses of chronic schizophrenia expressed varying perceptions of their mental health. Most perceived themselves as mentally well. This is in opposition to findings reported by Estroff (1981) and Dzurec (1986) that suggested that clients with schizophrenia tended to have negative self-perceptions. The author posits that this positive self-perception might be a function of respondents' expressed satisfaction with their housing situation. This is an area in which ongoing research is being conducted (Bininger, 1989; Dzurec, 1989). Housing satisfaction is thought by some researchers to precede successful community adaptation for the severely mentally disabled (Blanch, 1988). Respondents' perceptions of their mental health, as expressed in response to the interview protocol, appeared to be couched within primarily mundane, day to day issues. This finding is consistent with Estroff's conclusion that clients "seemed to have less control of their time, space, resources, and information than did outside and inside normals" (Estroff, 1981). The respondents gave themselves higher than average scores (ie, 3 or above on a five-point scale) overall on the PES, an instrument that measured aspects of their daily functioning. Their caretakers gave them somewhat lower overall scores on the PES. There was a moderate association between individual pairs of respondent-caretaker scores on the PES. Personal mental health perception did not appear to influence daily functioning.(ABSTRACT TRUNCATED AT 250 WORDS)     

More harm than good? Diagnostic codes for child and adult abuse

This study sought to understand the reasons for the lack of use of ICD diagnostic codes for child and adult abuse. New Jersey professionals were recruited to participate in three focus groups on child abuse, adult or primarily woman abuse, and elder abuse. Participants included health care providers, advocates from the community, and representatives of state agencies and the insurance industry. Concerns about coding abuse included further jeopardizing victims/patients, diagnostic uncertainty, and lack of resources. Members of the child abuse group were somewhat more receptive to coding abuse. Reasons to code, such as for documentation and reimbursement were discussed and rebutted. Most participants concluded that use of the abuse codes should be judicious because they have the potential to do more harm than good. More research is needed on the implications of coding for victims/patients along with medical education in the identification of abuse in general and coding abuse in particular.     

More than just the Adoption of Western Capitalism? Time Use Changes in East Germany Following Reunification

Using data from the German Socio-Economic Panel, this paper examines changes in East German time use following the German Reunification of 1990, which led to large and unexpected economic and institutional changes, including the switch from a socialist to a capitalist system. By estimating Differences-in-Differences models, the study finds that East Germans reduced the time they spend on market work (96 min per weekday) and nonmarket work (51 min), while increasing the time allocated toward leisure and job search activities. The observed declines in market work time were largest for low-educated East Germans, those who were in the lowest income group, as well as for individuals between the ages 46 and 64. When comparing trends in time use for East and West Germany between 1990 and 2000, I provide evidence for a convergence in East German time use to its West German counterpart following the adoption of Western Capitalism and several other institutional and economic changes in East Germany. One possible explanation for this might be the adoption of West German time preferences following the reunion of the two regions.     

Mutual help without borders? Plurality and heterogeneity of online mutual help practices for people with long-term chronic conditions

Online mutual help experiences may represent an opportunity for people with long-term chronic (LTC) conditions and their caregivers. However, there are very few accounts of or research on online practices of mutual support about such issues. On the other hand, the growth of online experiences of mutual aid has been extensive in recent decades. These experiences have been conventionally classified under the notion of ‘online support groups’. However, the notion of group seems to be reductive for the variety of forms, meanings and implications of such experiences. On the basis of these assumptions, our paper aims at: a) describing the main differences between traditional forms of mutual help and online mutual help; b) identifying the emerging forms of online mutual help experience, emphasizing their distinctive features; c) tracing the potential connections between different experiences and people, practitioners and institutions. We identify three main types of online mutual help experience: groups, communities and extemporary practices. We then analyze the value they can have for LTC people, caregivers, practitioners and institutions, emphasizing their heterogeneity. Finally we discuss the overall evolution of the mutual help phenomenon, considering its transition to an online dimension.     

Theory of mind: are there wider implications from working with d/Deaf people?

An exploratory teaching approach was inspired by the communicative experiences of d/Deaf students in tertiary education. ‘Theory of Mind’ has been used by some to describe the capacity to appreciate that views of others may be different from our own, a concept that could provide a different way for students and educators to understand the barriers identified. An adapted assessment highlighted challenges faced and a communication group provided opportunities for extending personal understandings of social settings. Emerging ideas to inform practice and potential implications for inclusion have relevance for other contexts.     

Self‐employment among people with disabilities: evidence for Europe

This paper examines the use of self‐employment among people with disabilities in Europe. Using data from the European Community Household Panel for the period 1995–2001 for 13 European countries we found that people with disabilities were more likely to be self‐employed than people without disabilities. Self‐employment provides flexibility and a better adjustment between disability status and working life. Moreover, the levels of satisfaction with job, type of job and working conditions of self‐employed disabled people are higher than those reported by disabled people who are wage and salary earners. Policy‐makers must encourage self‐employment to increase the levels of well‐being and employment of people with disabilities in Europe.     

‘We are just ordinary people working hard to reach our goals!’ Disabled students’ participation in Norwegian higher education

In this article we shed light on the experiences of disabled students attending professional courses in higher education in Norway. The findings from this empirical study are based on interviews with 14 students with diverse impairments, ranging from the visible to the invisible. They faced barriers that they resolved to address on their own, using their capabilities and working ‘in silence’ to meet the expectations of normal students in academia as strong and independent. In addition to their own motivation and self-determination, what facilitated their progress in their studies was that some of the staff and fellow students met them respectfully as ordinary students, while recognizing their strain and providing support without calling attention to it. Leaning on the Nordic Relational Model of Disability, we call for greater awareness of the complex interactional processes between the disabled students and people in their social environment.     

Online ghettoes,perils or supernannies? Australian young people with chronic illness and disability challenge some moral panics about young people online

Current literature focusing on young people’s digital technology use often reflects concerns that they may live virtual lives and withdraw from locally geographically situated spaces. It assumes the existence of a split between offline and online ‘worlds’ corresponding to ‘real ‘and ‘non-real’ respectively. This article reports research findings on how young people locate new social media technologies in their daily lives with particular focus on the relationship between their online and offline experiences. The voices of the young people guided the research, which found that their social media use contradicts conventional narratives of moral panic about the alleged unreality and fearful dangers of online spaces for young people.     

Should we provide oral health training for staff caring for people with intellectual disabilities in community based residential care? A cost-effectiveness analysis

Oral health training is often introduced into community-based residential settings to improve the oral health of people with intellectual disabilities (ID). There is a lack of appropriate evaluation of such programs, leading to difficulty in deciding how best to allocate scarce resources to achieve maximum effect. This article reports an economic analysis of one such oral health program, undertaken as part of a cluster randomized controlled trial. Firstly, we report a cost-effectiveness analysis of training care-staff compared to no training, using incremental cost-effectiveness ratios (ICERs). Effectiveness was measured as change in knowledge, reported behaviors, attitude and self-efficacy, using validated scales (K&BAS). Secondly, we costed training as it was scaled up to include all staff within the service provider in question. Data were collected in Dublin, Ireland in 2009. It cost between €7000 and €10,000 more to achieve modest improvement in K&BAS scores among a subsample of 162 care-staff, in comparison to doing nothing. Considering scaled up first round training, it cost between €58,000 and €64,000 to train the whole population of staff, from a combined dental and disability service perspective. Less than €15,000–€20,000 of this was additional to the cost of doing nothing (incremental cost). From a dental perspective, a further, second training cycle including all staff would cost between €561 and €3484 (capital costs) and €5815 (operating costs) on a two yearly basis. This study indicates that the program was a cost-effective means of improving self-reported measures and possibly oral health, relative to doing nothing. This was mainly due to low cost, rather than the large effect. In this instance, the use of cost effectiveness analysis has produced evidence, which may be more useful to decision makers than that arising from traditional methods of evaluation. There is a need for CEAs of effective interventions to allow comparison between programs. Suggestions to reduce cost are presented.     

More than Money: The Importance of Social Exchanges for Temporary Low-Skilled Migrant Workers’ Workplace Satisfaction

Research has focused on the happiness of immigrants, but the workplace satisfaction of temporary low-skilled migrant workers has rarely been explored. By utilizing survey data for two years, 2010 and 2013, along with interviews with migrant workers, we explored how economic or social factors could trigger diverse impacts on the satisfaction of temporary low-skilled migrant workers in different work environments. Results showed that economic factors triggered more notable impacts in 2010, while the importance of social factors increased with improvements in work environments in 2013. The results indicated that moving motive premises and social exchange theory effectively explain attitudes of temporary low-skilled migrant workers. Theoretical and practical contributions and suggestions of the results are also included.     

Teaching pedagogies enhancing social work students’ perceptions and attitudes toward older age in an undergraduate course on working with older people

Approximately threefold increases in older age population groups (+65 years) are projected in the next 15 years. Demographic changes in society will mean greater numbers of older adults in proportion to the younger generation. In the current policy on older age groups, emphasis is placed on healthy aging warranting a multidisciplinary workforce to work with older people. Despite this need and increased demand in the aged care sector, a fewer social work students are willing to undertake aged care placements or to choose it as a career option.

An innovative teaching and learning pedagogy was used in designing the course curriculum titled ‘Social Work with Older People’, including the input of invited specialist guest speakers, an on-campus interactive workshop with older guests, and an assessment designed to evaluate the learning related to the workshop content. The paper reports changes in the attitudes of students studying gerontological social work after the course delivery, evaluated through an online survey with the purpose of improving the learning outcomes in the course and to gauge students’ interest, experiences, attitudes and motivation to work in the aged care sector. The paper contributes to building knowledge in addressing the needs of the changing social demographic.     

The Social Model of Disability: What does it mean for practice in services for people with learning difficulties?

Does the social model of disability currently inform the delivery of services for people labelled as having profound and complex learning difficulties? What distinguishes practice which draws on the social model from that which is influenced by an individual model or a medical model of disability? This paper draws on the findings of a small scale interpretive research study and some of the current debates within disability studies to illuminate these questions. It concludes that the social model can and does positively impact on some practice and that it should be taught to all providers of services for this group. It further concludes that to include discussion about individual experience of impairment in such training may have negative consequences.     

“Inclusive Entrepreneurship”: A Process for Improving Self-Employment for People with Disabilities

ABSTRACT

This article describes the theoretical framework, processes, and outcomes associated with a U.S. Department of Labor, Office of Disability Employment Programs (ODEP)-funded project: “Start-UP NY.” Beginning in 2007, ODEP funded three Start-UP projects throughout the United States to test and demonstrate improved practices supporting entrepreneurship among people with diverse disabilities, including those with mental illnesses and veterans with disabilities. The New York project coined the term “Inclusive Entrepreneurship” to describe a model that promoted change at the individual, program, and systems level to improve the rate of small business development by people with disabilities. The author describes the genesis of the project, its intended effects and the lessons learned along the way that resulted in either course corrections or improvements, He then discusses how the project has been sustained and provides recommendations for replicating the project’s approach and methods in other United States communities or in other countries.     

What is the value of qualitative longitudinal research with children and young people for international development?

This paper draws on data from Young Lives, a longitudinal study of childhood poverty, to explore how international development research might be strengthened by including qualitative longitudinal research (QLR). We review three problems in development studies: (a) the relatively low status of qualitative research within the hierarchy of development knowledge, (b) the predominance of cross-sectional research, and, (c) marginality of research with children and young people. We offer examples from Young Lives research on early marriage in Ethiopia, household poverty dynamics in India and Ethiopia, and aspirations and migration in Peru, to highlight the potential of QLR to address these drawbacks. We suggest that QLR illuminates the dynamic complexities of the processes and practices of everyday life, how they are experienced by children and young people, the responses they make, and the shifting trajectories of their lives.     

More equal than others? A comparative analysis of state and non-state perceptions of interest representation and decision-making in REDD+ negotiations

This paper provides a quantitative analysis of stakeholder perceptions regarding the governance of the UN climate change negotiations on reducing emissions from deforestation and forest degradation in developing countries (REDD+). Governance quality and legitimacy were evaluated by means of an online survey conducted in 2011, using a normative framework of principles, criteria and indicators. The paper concentrates on national-level stakeholders active in REDD+ in Nepal, and their perceptions of governance quality, with a discussion, given the focus of this special volume, that emphasizes inclusiveness, equality and resources (indicators of interest representation) and democracy, agreement and dispute settlement (indicators of decision-making). Respondents were selected from state (i.e. governmental) and non-state (i.e. civil society) interests from a range of sectors active in REDD+ at the national level. The results show that survey respondents generally found REDD+ to be inclusive, but did not consider that there was the necessary capacity, or resources, for meaningful participation. A concluding section reviews the framework applied, and comments on the nature of multi-stakeholder relations in contemporary global governance, and REDD+ specifically.     

The Music Engagement Program for people with Alzheimer’s disease and dementia: Pilot feasibility trial outcomes

Alzheimer’s disease and dementia are common, highly disabling conditions frequently requiring residential care. This exploratory proof-of-concept study aimed to determine if the specialised Music Engagement Program (MEP) was sustainable, acceptable, and effective in improving quality of life, emotional wellbeing, and depression symptoms in this population. Sixteen residents, six staff members, and three family and community members took part in the evaluation of the MEP for people living with dementia in a residential aged-care nursing home in Canberra, Australia. Multiple methods were used. Quantitative evaluation assessed residents’ depression symptoms (Cornell scale) at pre- and post-intervention, and emotional wellbeing pre- and post-session. Qualitative interviews with staff, and family and community members addressed the MEP’s acceptability and potential sustainability. Results showed residents’ mean depression scores were reduced from pre- to post-intervention (p = .039; d_z = 0.72). Interviews established multiple benefits for residents including improved mood, calmness, and reduced aggression. However, staff did not believe it was feasible to continue the MEP sessions beyond the trial period without an external facilitator, citing potential difficulties in adhering to internal activities due to time constraints. This pilot study provides encouraging preliminary evidence for the MEP’s acceptability and potential effectiveness for improving depression and wellbeing in this group.     

Social entrepreneurship as an employment pathway for people with disabilities: exploring political–economic and socio-cultural factors

The current economic climate demands more innovative approaches to increasing labor market participation for people with disabilities. Social entrepreneurship (SE) offers one alternative employment pathway. However, little is known about the broader factors influencing SE for people with disabilities. Using empirical data from focus groups comprised of social entrepreneurs with disabilities and interviews with key stakeholders working in the fields of policy, disability, and business, this research frames its analysis in the intersection of disability studies and entrepreneurship to explore which factors influence the potential for SE to provide equal participation opportunities for people with disabilities in the labor market. Findings suggest that further consideration of political–economic and socio-cultural factors is needed if we are to better understand the potential of SE for people with disabilities.