Grass Roots Promotion of Community Health and Human Rights for People with Disabilities in Post-communist Central Europe: a profile of the Slovak Republic

Individuals living with a disability or chronic illness in post-communist Central and Eastern Europe face significant challenges to quality of life. The government-supported health care infrastructures in the post-communist countries of Central and Eastern Europe remain highly centralised and institutional, which poses particular obstacles to people with disabilities who wish to live independently in their communities. A partial solution to this difficulty has been the development of innovative grass roots organisations that provide community-based support to individuals with disabilities or chronic illness. These disability organisations provide services and advocacy that allow individuals to receive needed support outside of the biomedical institutions, facilitating independent living in the community. They do so, however, in a political and economic environment of immense change, and one with varying degrees of support for non-governmental organisa tions and a Civil Society. The following article profiles this grass roots development in one particularly interesting post-communist Central European country, the Slovak Republic.     

Mental illness, supported education, employment and recovery: Ben's story

Supported education programs aim to facilitate the successful return to higher education for people living with mental illness who may have experienced educational interruptions due to their illness. This article shares the story of Ben who lives with mental illness and his experience of participating in an Australian supported education course. The two authors draw on a qualitative life history approach as they reflected on Ben's experiences of mental illness, educational disruption and returning to education and employment. The losses associated with educational disruption and the positive and empowering experience of becoming a student again are described as positively impacting recovery. Ben's story is shared in anticipation that other people living with mental illness, their family and carers, or workers supporting those people, may draw from his determination and success, in their own journeys of recovery.     

Using Social Media to Change the Narrative Around Chronic Illness

Chronic illness is a prevalent issue for many individuals. Various theoretical approaches have been employed in the psychotherapeutic treatment of chronic illness and the effects it has on the individual with the illness. These approaches frequently overlook the strengths of the person living with the illness as well as fail to address aspects of modern life such as social media use of the client and the influence it holds for those living with a chronic illness. This paper proposes the application of narrative therapy and social media use as a narrative therapeutic technique when treating those who suffer from chronic illness. A clinical vignette is used to illustrate possible applications of therapeutic techniques in conjunction with therapist-directed social media use. Implications for clinical practice and limitations are discussed.     

Disability and Chronic Illness Identity: Interviews with Lesbians and Bisexual Women and Their Partners

Disability rights activists and cultural workers are articulating disability identity and culture. Through interviews with lesbians and bisexual women with disabilities or chronic illnesses and their partners, the present study examined disability/chronic illness identity on the level of individual, couple, and community. Participants shared differing perspectives about how disability/chronic illness identity relates to other aspects of identity, and about whether disability/chronic illness identity is fluid or constant. They described several challenges they have encountered in developing disability/chronic illness identity. Couples talked about developing boundaries and balance in their relationships, and about how disability or chronic illness has strengthened their relationships. A number of participants spoke about identity as intimately linked with community. Implications for community building are discussed.     

Fear of people with mental illnesses: the role of personal and impersonal contact and exposure to threat or harm

Vignette and laboratory experiments suggest that negative reactions to people with mental illness are a direct consequence of their symptomatic behavior, but because of their poor external validity, these studies cannot tell us whether widespread negative public reactions to people with mental illness actually result from observation of symptomatic behavior. Focusing on perceived danger, we use a large national survey to test the "behavior hypothesis" in the general population. We reason that, if this hypothesis is correct, contact with people with mental illnesses should be associated with more perceived danger, and exposure to threat or harm should mediate this association. On the contrary, respondents with more personal and impersonal contact perceive people with mental illness to be less dangerous. Exposure to threat is more common among people with more contact, but this exposure explains very little of the variance in perceived danger. These findings do not support the conclusion that public fear of people with mental illness is due to the observation of violent behavior.     

Love in Times of Cholera: Systemic Reflections on Supporting Families Through the Journey(s) of Illness

This paper is the result of our increasing interest in the experience of illness in families and the concomitant reflections on how best to therapeutically support these families through this process. This interest led us to reflect on the nuanced way in which language establishes a play with the experience of illness, a play that can amplify or reduce its effects. Such an interplay in turn led us to consider the valuable role that family therapists have in helping families and treating practitioners to create a safe space for conversation about illness. Further questions are also explored in relation to whether there is a role for family therapists in facilitating the interface between our clinical practice with clients and the wider treating medical community. And, if so, what shape would such an interface take? Considerations at this level would include the anticipation of psychological reactions to diagnosis of chronic and life‐threatening illnesses, in particular the importance of ‘normalisation’ of the psychological reactions to such chronic and/or life threatening diagnoses; the complex dynamics emerging from the interface between the effects of illness in the subjectivity of the ill person and the grief experienced by the other family members; different family members’ narratives of the illness; relevant community contexts; and, lastly, ways to help the family members and/or the ill person navigate the medical system including the use of second opinions, cyberspace information, and other systems in their ecology, such as the spiritual dimension. Some aspects of children's narratives of illness are also identified. The paper has been organised around the dialogue that the authors had around one of their clinical cases.     

IDENTITY DILEMMAS OF CHRONICALLY ILL MEN

Chronic illness frequently comes to men suddenly with immediate intensity, severity, and uncertainty. Because men contract more serious and life-threatening chronic illnesses than women, experiencing illness causes men different identity dilemmas. This paper explores men's identity dilemmas by studying how men experience chronic illnesses and by looking at how assumptions about masculinity affected their identity. The paper explores four major processes: (1) awakening to death after a lifethreatening crisis, (2) accommodating to uncertainty as men realize that the crisis has lasting consequences for their lives, (3) defining illness and disability and (4) preserving self to maintain a sense of coherence while experiencing loss and change. The data are derived from forty in-depth formal interviews of twenty men, informal interviews with these men, and an extensive collection of published and unpublished personal accounts. The data were analyzed through the strategies of grounded theory.     

Online Peer Support Programs for Young People with a Parent Who has a Mental Illness: Service Providers’ Perspectives

Young people with a parent or parents who have mental illness are at a higher-than-average risk of experiencing emotional and behavioural difficulties. Notwithstanding the difficulties experienced by these young people, opportunities to interact with and obtain support from peers living in similar families can be beneficial. While young people face several barriers to participating in face-to-face peer support programs, online approaches potentially provide a different way of obtaining peer support. This paper aims to explore service providers’ perspectives on current Victorian peer support programs, as well as the strengths and weaknesses of online approaches to peer support. Semistructured interviews were conducted with 17 mental health professionals who work with families affected by parental mental illness. Participants recognised that many young people miss out on face-to-face peer support programs, and were highly supportive of the idea of online programs. This study suggests that online peer support programs for young people could occupy an important position in the evolving suite of services for Australian families affected by mental illness.     

From the streets to assisted living: perceptions of a vulnerable population

The rapid growth of assisted-living facilities is paralleled by the necessity to understand the needs of the people living in them. A hallmark challenge for individuals who are poor and disabled, and often marginalized from mainstream society, is maintaining integrity and being a whole person, rather than a sum of broken parts. A key to maintaining this integrity is the ability to find stable housing and support systems. The inner-city assisted-living facility in this study is unique in that all of its residents are funded by Medicaid. The residents have complex needs related to histories of homelessness, mental illness, drug and/or alcohol addiction, and chronic illness. The purpose of this study was to explore the needs of this vulnerable population as they adapt to a new home and a new concept of assisted, yet independent, living. Structured interviews with key informants and oral survey questionnaires with residents provided quantitative and qualitative data about physical and mental health status, social support, perception of control, psychological wellbeing, and life satisfaction. This study provided valuable insights into the challenges inherent in providing a high quality of life in assisted living for a vulnerable population with diverse needs.     

Deinstitutionalization, social rejection, and the self-esteem of former mental patients

Modified labeling theorists have long argued that the stigma of mental illness has important consequences for the lives of people with mental illness. We propose that social rejection is an enduring force in the lives of people with mental illness and that these experiences are central to understanding the poor self-concepts described by many former psychiatric patients. We explore changes in a cohort of recently deinstitutionalized mental patients' (N = 88) self-esteem and experiences with social rejection using data from a three wave panel survey conducted while institutionalized and over a two-year period following the patients' discharge from a long-term state hospital. Our results indicate that social rejection is a persistent source of social stress for the discharged patients. Moreover, these experiences increase feelings of self-deprecation that, in turn, weaken their sense of mastery. Where the patients' received their follow-up care--whether in a community setting or in another state hospital--had little impact on their self-related feelings or on their experiences of social rejection. Our results provide further support for modified labeling theory and underscore the need to consider the dynamic relationship between stigmatizing experiences and self-related changes.     

The Economic Impact of Progressive Neurological Illness on Quality of Life in Australia

The current study examined the impact of financial costs and self-reported economic pressure on the quality of life of patients with progressive neurological illness. Participants were 423 people from four illness groups in Australia. Participants completed measures of (a) quality of life, (b) income, (c) expenses, (d) economic pressure, (e) social support, (f) relationship satisfaction, and (g) severity of illness. There was a strong negative association between quality of life and economic pressure (but not income or expenses) for all groups. Subjective assessment of economic pressure was strongly associated with quality of life for people with motor neurone disease and multiple sclerosis. Implications of these results for assisting people with progressive neurological illnesses to cope with the financial changes that occur due to their illness are discussed.     

The art of resilience: photo-stories of inspiration and strength among people with HIV/AIDS

Using the visual arts to aid healing is a common therapy for people with critical illness, yet the use of art to improve the lives of people with HIV is under-utilised. Eight male and 20 female participants living with HIV in urban areas of the Midwest, United States, participated in three group photovoice photo-sharing and discussion sessions, post-project individual interviews and a community photo exhibit. We used a grounded theory approach to analyse interview data and identified three key themes: (1) health and wellness, (2) fear and stigma and (3) restoring a threatened identity. Participants identified how taking photos, reflecting on and sharing them in focus groups helped them express themselves while living with and coping with HIV. Offering photography as form of expression is a way to foster strength and, consequently, improve the lives of people living with HIV. Our participants benefitted from the process of telling their story with images. They were able to express positive aspects of their lives which could be a healthy form of catharsis in and of itself. Future research should continue to investigate how participants in participatory approaches like photovoice actually do benefit from the research. Although we focused this analysis on resilience, photovoice is flexible and participants’ responses to it are varied. Additional outcomes such as impact on mental and physical health are worthy of additional exploration.     

Chronic illness and social network bridging in later life

Chronic disease has profound impacts on the structural features of individuals’ interpersonal connections such as bridging — ties to people who are otherwise poorly connected to each other. Prior research has documented competing arguments regarding the benefits of network bridging, but less is known about how chronic illness influences bridging and its underlying mechanisms. Using data on 1555 older adults from the National Social Life, Health, and Aging Project (NSHAP), I find that older adults diagnosed with chronic illness tend to have lower bridging potential in their networks, particularly between kin and non-kin members. They also report more frequent interactions with close ties but fewer neighbors, friends, and colleagues in their networks, which mediates the association between chronic illness and social network bridging. These findings illuminate both direct and indirect pathways through which chronic illness affects network bridging and highlight the context-specific implications for social networks in later life.     

U.S. sociology and the Iraq War

The 2003 U.S. invasion and subsequent occupation of Iraq had profound consequences for the people living in that nation. In this essay, I provide a brief overview of the dramatic changes that transpired in Iraq due to the war. I then move on to highlight the contributions U.S. sociologists have made in studies regarding the conflict, based on a review of articles published from 2003–2016 in ten generalist U.S.‐based journals. My review shows that while U.S. sociology has made significant contributions to further collective knowledge about American aspects of the Iraq War, U.S. sociologists have paid very little attention to the actual impacts of the invasion and occupation on Iraqi social organizations, Iraqi culture, and on the lives of individual Iraqis. I make the case that these historically significant events deserve more scholarly attention than they have been given so far. I further argue that U.S. sociologists have a special responsibility to document, study, and explain the consequences of their government's behavior when it causes extensive harm to people living in another land.     

Employees with Long Term Illnesses or Disabilities in the UK Social Services Workforce

Between 6% and 16% of the working age population have a long term illness or disability. 'Disability' is not consistently defined, however, and neither the distribution of disabled employees nor the nature of their disabilities is well documented. This paper presents the findings of a study of statutory social services employees in the UK and for the first time provides an estimate of the proportion of workers with long term illnesses or disabilities. Over a fifth had a self-reported long term illness or disability, 8% a condition which affected daily life. The distribution and nature of these, and the effects of gender, age, occupational categories, and work experience such as job satisfaction, stress and sick leave, are examined. Changes in legislation and the profile of the working age population are likely to increase the number of people with disabilities in work. The paper concludes that at a time of difficulties with recruitment and retention, social services and other social care employers must develop a range of responses to support and retain the diversity of people with disabilities in work.     

Exploring Epistemologies: The Debate Continues

ABSTRACT

Stigma is a significant barrier to recovery and full community inclusion for people with mental illnesses. Social work educators can play critical roles in addressing this stigma, yet little is known about their attitudes. Social work educators were surveyed about their general attitudes about people with mental illnesses, attitudes about practice with people with mental illnesses, and attitudes about students with mental illnesses. On average, educators’ general and practice attitudes were not negative. However, respondents did view a student with a mental illness differently from a “typical social work student.” Findings suggest that we, as social work educators, must raise our awareness and address our own attitudes to support students and uphold our social work values.     

Haarige Helfer,gefiederte Gefährten und schuppige Freunde

Pets are not only family members. For a lot of people in all stages of life cycle, pets are important sources of support. They are able to contribute to our health as well as to buffer stress and illness in our lives. The may be seen as important agents of socialisation and development of children and as friendly companions of the elderly. The article reviews the state of knowledge in positive aspects of human animal bonds and develops a bio-psycho-social panorama of effects.     

In their voices: Identity preservation and experiences of Alzheimer's disease

Although much research pertaining to Alzheimer's disease (AD) explores the impact on caregivers, there is a general paucity of data on experiences of living with the condition. Contemporary medical initiatives to diagnose people earlier in the illness trajectory make it increasingly possible to hear the voice of people with memory loss, which can improve both public perception and policy. This study examined the impact of being diagnosed with early AD on identity construction. Respondents highlighted aspects of being diagnosed that were instrumental in making sense of changes in their lives and identities, including defining moments, to tell or not to tell, and preservation. Findings suggest that understanding how to identify memory deficits, the context of diagnosis, and the techniques employed for managing illness are crucial to subjective experiences. Despite normative expectations and the rhetoric of loss, respondents deliberately manage their interactions to make sense of their lives and preserve themselves.     

Changing households in Britain: do families still matter?

The decline in traditional nuclear family households, and the marked increase in the proportion of people living alone, or alone with dependent children have led some to claim that individualism has replaced the importance of family life. In this paper we use data from a large household panel study of Britain to suggest that this is not true. Regardless of people's own household circumstances, family issues and events are clearly top of the agenda of what people consider matter most in their lives. Moreover, in talking about events that mattered, people are almost as likely to talk about something that happened to other family members, as they are to talk about themselves. Surprisingly, people living alone or alone with children are as likely to mention other family members as those who live in family households. Yet the importance of family does vary considerably by gender and age. Women give more importance to family events and events in the lives of other family members than do men. Young people are far more self-centred than older people but whether this is a generational or life-stage difference is open to question.