Exploring the experience of stigma in severe mental illness : a Portuguese contribution to the validation of a psychometric instrument

RESUMO: Fizemos uma análise da evolução do conceito de estigma, das suas correlações e das suas consequências e analisámos os instrumentos psicométricos utilizados para estudar experiências pessoais de estigma. Revimos os principais estudos de investigação sobre estigma em Portugal. Revimos, igualmente, os estudos relevantes utilizando o “Consumer Experiences of Stigma Questionnaire” (CESQ) e as propriedades psicométricas já documentadas. O nosso estudo teve como objetivos: explorar as experiências de estigma numa amostra portuguesa de pessoas com perturbação mental grave e contribuir para a documentação das propriedades psicométricas do “Consumer Experiences of Stigma Questionnaire” e para a validação da sua versão portuguesa. Fizemos um estudo transversal, descritivo e analítico, recolhemos dados sociodemográficos e clínicos e medimos as experiências de estigma e o funcionamento global. A frequência das respostas da secção de estigma foi semelhante à dos restantes estudos utilizando a CESQ. A frequência das respostas na secção de discriminação foi ligeiramente inferior à reportada noutros estudos. Verificámos a existência de uma associação entre a pontuação da subescala de discriminação, o sexo masculino e o facto de se viver na comunidade. A pontuação da subescala de discriminação está também correlacionada de forma positiva com o funcionamento global. Os alfas de Cronbach para a CESQ e para as suas subescalas foram considerados bons. Os coeficientes de correlação intraclasse foram igualmente considerados igualmente bons. Utilizando técnicas de análise fatorial, verificámos que a maior parte dos itens da CESQ se enquadrava em dois fatores, correspondendo sensivelmente às subescalas definidas previamente. Concluímos que o presente estudo explorou com sucesso a questão do estigma em Portugal, contribuindo em simultâneo para a validação do “Consumer Experiences of Stigma Questionnaire.--------------ABSTRACT: We reviewed the evolution of concept of stigma, its correlates and consequences, and analysed psychometric instruments that were used to study personal experiences of stigma. We provided an insight over research of stigma in Portugal. We reviewed relevant studies that use Consumer Experiences of Stigma Questionnaire and documented psychometric properties of this instrument. Our study aimed both to explore experiences of stigma in a Portuguese sample of people with severe mental illness and to contribute to the assessment of the psychometric properties of Consumer Experiences of Stigma Questionnaire and to the validation of its Portuguese translation. We performed a cross sectional descriptive and analytic study, collected socio-demographic data and measured experiences of stigma and global functioning. Frequency of responses regarding stigma section of CESQ matched previous studies using that scale. Frequency of responses in discrimination section was slightly lower than previously reported studies. We found an association between the discrimination score of CESQ and both male gender and living in the community. The discrimination score also positively correlated with global functioning. Cronbach alphas for CESQ and its subscales were good. Intraclass correlation coefficients for CESQ and stigma subscale were also good. Using factor analysis we found most of the items in CESQ would fit 2 factors, grossly corresponding to the previously defined subscales. We conclude that this study successfully explored stigma in Portugal, contributing in simultaneous to the validation of Consumer Experiences Questionnaire.

For the love of a barking lady: an exploration of mental illness in the light of Max Scheler's "Invisible person"

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Flourishing in the face of mental illness: A heuristic examination of the contribution of leisure to creating a meaningful life

The purpose of this research was to examine the ways in which individuals with mental illness create a life of purpose, satisfaction and meaning. The data supported the identification of four common themes: (1) the power of leisure in activation, (2) the power of leisure in resiliency, (3) the power of leisure in identity and (4) the power of leisure in reducing struggle. Through an exploration of the experience of having a mental illness, this project supports that leisure provides therapeutic benefits that transcend through negative life events. In addition, this project highlights the individual nature of recovery as a process of self-discovery. Through the creation of a visual model, this project provides a benchmark for how a small group of individuals have experienced living well with mental illness. As such, this work brings new thought to the growing body of mental health and leisure studies literature.

Mental illness in modern and contemporary theatre : An analysis of representations of mental illness in a selection of plays, accompanied by a new play about schizophrenia

Mémoire numérisé par la Division de la gestion de documents et des archives de l'Université de Montréal

Narrative development and supported employment of persons with severe mental illness

Essai présenté à la Faculté des arts et des sciences en vue de l’obtention du grade de Doctorat en psychologie option psychologie clinique

The effect of intensive case management on the relatives of patients with severe mental illness

Objective: Relatives play a vital role in caring for patients with severe mental illness but receive inadequate support from psychiatric services. Evidence suggests that although intensive case management is directed primarily at patients, relatives may benefit a's well. This study examined whether relatives of patients who were receiving intensive case management had more contact with mental health professionals than relatives of patients who were receiving standard case management. It also examined whether relatives of patients receiving intensive case management appraised caregiving less negatively and experienced less psychological distress than relatives of patients receiving standard case management. Methods: The sample was drawn from the pool of patients participating in the UK700 randomized controlled trial of intensive case management. Prospective data on contact between case managers and the relatives of 146 patients were collected over a two-year period. At a two-year follow-up assessment, relatives of 116 patients were. interviewed with the Experience of Caregiving Inventory and the 12-item General Health Questionnaire. Results: Considerably more relatives of patients receiving intensive case management had contact with a case manager during the study period than relatives of patients receiving standard case management (70 percent compared with 45 percent). However, relatives of patients receiving intensive case management did not-appraise caregiving less negatively or experience less psychological distress than relatives of patients who were receiving. standard case management. Conclusions: Reducing case managers' caseloads alone. will not guarantee adequate support for relatives.. Instead, providing more support will need to be an explicit aim, and staff will require specific additional training to achieve it.

Continuity of care for carers of people with severe mental illness: results of a longitudinal study

Introduction: Continuity of care has been demonstrated to be important for service users and carer groups have voiced major concerns over disruptions of care. We aimed to assess the experienced continuity of care in carers of patients with both psychotic and non-psychotic disorders and explore its association with carer characteristics and psychological well-being. Methods: Friends and relatives caring for two groups of service users in the care of community mental health teams (CMHTs), 69 with psychotic and 38 with non-psychotic disorders, were assessed annually at three and two time points, respectively. CONTINUES, a measure specifically designed to assess continuity of care for carers themselves, was utilized along with assessments of psychological well-being and caregiving. Results: One hundred and seven carers participated. They reported moderately low continuity of care. Only 22 had had a carer’s assessment and just under a third recorded psychological distress on the GHQ. For those caring for people with psychotic disorders, reported continuity was higher if the carer was male, employed, lived with the user and had had a carer’s assessment; for those caring for people with non-psychotic disorders, it was higher if the carer was from the service user’s immediate family, lived with them and had had a carer’s assessment. Conclusion: The vast majority of the carers had not had a carer’s assessment provided by the CMHT despite this being a clear national priority and being an intervention with obvious potential to increase carers’ reported low levels of continuity of care. Improving continuity of contact with carers may have an important part to play in the overall improvement of care in this patient group and deserves greater attention.

Cardiovascular risk factors for people with mental illness

The objective of this study was to document the prevalence of risk factors for cardiovascular disease among people with chronic mental illness.

A qualitative study of primary health care access, barriers and satisfaction among people with mental illness

Research has found that a substantial proportion of individuals with mental illness have high morbidity and mortality rates, and high under-diagnosis of major physical illnesses. Furthermore, people with a mental illness tend not to seek out or utilise health care services. The reasons for the negative attitudes and behaviour towards health care services among this population have not been investigated. This paper presents findings from a study that investigated the health care service needs of people with mental illness (n = 20), and views from health care providers (n = 16) regarding access to these services by people with a mental illness. Results indicated that psychiatric patients identified a range of barriers to their health care usage and low levels of health care satisfaction. These views were shared with health care professionals. Reasons for these findings and strategies to address these problems so that there is better access to health care services for people with mental illness are discussed.

Mental illness and substance use : an Australian perspective

This paper presents a review of the literature of service trends and practice recommendations for management of those with the dual diagnosis of mental illness and substance abuse. The method for the review was to search bibliographical data bases and hand held literature published in English between 1990 and 2007. Using the search terms dual diagnosis, and co-morbidity and mental illness, 93 abstracts were selected and reviewed. The authors concluded that a collaborative approach to care with better integration of drug and alcohol services within mental health would benefit clients with a dual diagnosis. Improved education to enhance the assessment and diagnosis of this client group is also considered essential for clinicians in both mental health and alcohol and drugs services.

Being resilient as described by people who experience mental illness

Aim: The purpose of this research was to explore resilience as described by consumers of mental health services in Australia who have experienced mental illness.

Background: Most qualitative research pertaining to resilience has focused on child and adolescent groups. In relation to the Australian context there appears to be a paucity of qualitative studies on resilience and the experience of mental illness.

Method: The study utilized a phenomenological approach elucidated by Colaizzi as the philosophical underpinnings of the study. In keeping with Colaizzi’s (1978) approach to inquiry, information was gathered through in-depth, semi-structured individual interviews. Information analysis utilised Colaizzi’s (1978) original seven-step approach with the inclusion of two additional steps, making this study’s analysis a nine step process.

Findings: Emergent themes explicated from participant transcripts follow: Universality, Acceptance, Naming and knowing, Faith, Hope, Being the fool and, Striking a balance, Having meaning and meaningful relationships, and ‘Just doing it’. The emergent conceptualisation which encapsulated the themes was; Viewing life from the ridge with eyes wide open. - choosing to walk through the darkness all the while knowing the risks and dangers ahead and making a decision for life amid ever-present hardships.

Conclusion: The findings of this study suggest being resilient can be learnt and therefore, should be a fundamental consideration in guiding therapeutic interventions within the context of clinical practice.

Relevance of health literacy models for people with severe mental illness

People with severe mental illness experience elevated levels of impairment, morbidity and health-risk behaviours compared with the general population. Despite this, it is consistently reported that they do not visit health professionals, including preventative health professionals, as regularly as the general population. Their poor health suggests that current health promotion efforts have been largely ineffective in addressing their specific needs. Barriers that might explain this include lack of motivation, expense and lack of access. Health literacy is also a potentially important factor. As a part of a programme of work to develop appropriate and effective health promotion for this group, we have explored existing health-literacy models and their relevance to marginalized populations, in particular, people experiencing severe mental illness. A comprehensive search of the literature was undertaken. Models of health literacy identified were analyzed to determine the source population, underpinning theory/frameworks, supporting research evidence and to consider their potential generalisability. This paper presents an analysis of existing health-literacy models in the context of severe mental illness. We propose that because existing models of health literacy were developed through consultation with people experiencing challenges to specific health and social issues, for example, cancer, low income and limited education, this raises questions as to the applicability of these models to people experiencing severe and ongoing mental illness. Whilst such individuals were not actively excluded in the development of the existing models, we propose the development of an alternative model which considers this population's needs and limitations in accessing effective health-promotion campaigns/programs.

Beyond mental illness

The Introducing Me program was developed as a recovery-oriented intervention program for people with mental illness. Program trials revealed improvements in self-concept, self-esteem, reduced social anxiety, and overall positive feedback. This novel and innovative program has important implications for the treatment and wellbeing of persons with a severe mental illness. The Professional Portfolio discusses issues relating to the assessment and diagnosis of depression in adolescents and factors determining appropriate treatment recommendations. Four case studies are presented.