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Article
Publication date: 1 October 2002

Alisoun Milne and Heather Wilkinson

This paper presents the findings of two research projects focusing on sharing a diagnosis of dementia. The first paper analyses the attitudes of GPs towards early diagnosis

Abstract

This paper presents the findings of two research projects focusing on sharing a diagnosis of dementia. The first paper analyses the attitudes of GPs towards early diagnosis and the second explores the user experience of receiving a diagnosis (Milne et al, 2000; Pratt & Wilkinson, 2001). The authors draw upon these ‐ as well as wider research ‐ in suggesting ways that diagnostic practice can be improved by taking account of the user perspective. The findings are relevant to all those professionals working in a primary care context.

Details

Journal of Integrated Care, vol. 10 no. 5
Type: Research Article
ISSN: 1476-9018

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Article
Publication date: 9 March 2015

Deborah Morris and Nathalie Gray

The purpose of this paper is to describe the evaluation of the “Living with a Personality Disorder” group (Morris, 2011a). This intervention is a psycho-education group…

Abstract

Purpose

The purpose of this paper is to describe the evaluation of the “Living with a Personality Disorder” group (Morris, 2011a). This intervention is a psycho-education group for women with an intellectual disability (ID) and a personality disorder (PD). It draws on psycho-education, biosocial theory (Linehan, 1993) and compassionate mind approaches (Gilbert, 2009). It aims to increase knowledge of personality, PDs, to increase awareness of the “non-disordered” parts of self and to increase knowledge of psychological treatments for PD’s.

Design/methodology/approach

The intervention was delivered to women detained in a specialist women’s learning disability forensic service. It was delivered over 12 group and two individual sessions. The Knowledge of Personality Disorders Questionnaire (D’Silva and Duggan, 2002), the Self-Compassion Scale (Neff, 2003), the University of Rhode Island Change Assessment scale (McConnaughy et al., 1983) and a series of Likert scale questions and statements were used to assess the utility of the intervention. The intervention was piloted between 2012 and 2014 in a series of small groups. The lead facilitator for each intervention was a registered psychologist with training in dialectical behaviour therapy.

Findings

Completing the intervention resulted in an increase in knowledge of PDs, treatments, increased self-compassion and therapeutic optimism and awareness of the limitations of a PD diagnosis.

Originality/value

A new intervention that may increase knowledge of PDs, of personal strengths and increase optimism about change that may be a useful component to the treatment for service users with PDs and an ID.

Details

Journal of Intellectual Disabilities and Offending Behaviour, vol. 6 no. 1
Type: Research Article
ISSN: 2050-8824

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Book part
Publication date: 23 November 2017

Georgiann Davis and Chris Wakefield

Historically, it has been common practice for doctors and parents to withhold the diagnosis from their minor intersex patients. This study seeks to integrate intersex…

Abstract

Purpose

Historically, it has been common practice for doctors and parents to withhold the diagnosis from their minor intersex patients. This study seeks to integrate intersex youth experiences into the growing body of literature on diagnosis disclosure for intersex patients.

Methodology/approach

Using gender structure theory as a model, 16 intersex youth were given in-depth surveys regarding their experiences with their intersex identity in individual, interactional, and institutional contexts.

Findings

Participants more positively experience intersex than the earlier generations of intersex people. They were not deeply troubled by their diagnosis as doctors have historically feared, and they are open about their diagnosis with their non-intersex peers and teachers. They also find peer support valuable.

Research limitations/implications

Data was collected from a single event and cannot represent all intersex youth. Future research must continue to engage with intersex youth experiences both inside of and beyond activist and support group networks.

Practical implications

These findings are strong exploratory evidence for the importance of diagnosis disclosure for intersex youth. Policies of withholding intersex diagnoses in clinical and familial contexts should be reevaluated in light of the experiences of intersex youth.

Social implications

Diagnosis disclosure for intersex youth creates the potential for increased medical decision-making participation and increased capacity for activism and community building around intersex issues.

Originality/value

Our results encourage future studies that center the experiences of intersex youth, for we conclude that theorizing the lived experiences of intersex people is incomplete without their perspectives.

Details

Gender, Sex, and Sexuality Among Contemporary Youth
Type: Book
ISBN: 978-1-78714-613-6

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Article
Publication date: 30 July 2020

Zhanna Lyubykh, Nick Turner, Julian Barling, Tara C. Reich and Samantha Batten

This paper investigates the extent to which disability type contributes to differential evaluation of employees by managers. In particular, the authors examined managerial…

Abstract

Purpose

This paper investigates the extent to which disability type contributes to differential evaluation of employees by managers. In particular, the authors examined managerial prejudice against 3 disability diagnoses (i.e. psychiatric, physical disability and pending diagnosis) compared to a control group in a return-to-work scenario.

Design/methodology/approach

Working managers (N = 238) were randomly assigned to 1 of 3 scenarios containing medical documentation for a fictional employee that disclosed either the employee's psychiatric disability, physical disability, or a pending diagnosis. The authors also collected a separate sample (N = 42) as a control group that received a version of the medical documentation but contained no information about the disability diagnosis.

Findings

Compared with employees without stated disabilities, employees with a psychiatric disability were evaluated as more aggressive toward other employees, less trustworthy and less committed to the organization. Compared to employees with either physical disabilities or pending diagnoses, employees with psychiatric disabilities were rated as less committed to the organization. The authors discuss implications for future research and the trade-offs inherent in disability labeling and disclosure.

Originality/value

The current study extends prior research by examining a broader range of outcomes (i.e. perceived aggressiveness, trustworthiness and commitment) and moving beyond performance evaluations of employees with disabilities. The authors also assess the relative status of a “pending diagnosis” category—a type of disclosure often encountered by managers in many jurisdictions as part of accommodating employees returning to work from medical-related absence.

Details

Personnel Review, vol. 50 no. 2
Type: Research Article
ISSN: 0048-3486

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Article
Publication date: 22 June 2012

Fabricia Silva da Rosa, Sandra Rolim Ensslin, Leonardo Ensslin and Rogério Joao Lunkes

The aim of this paper is to present a framework to create a better understanding of the context and to aid the environmental disclosure management process. The paper seeks…

Abstract

Purpose

The aim of this paper is to present a framework to create a better understanding of the context and to aid the environmental disclosure management process. The paper seeks to present a case study illustrating the proposed methodology for assessing environmental disclosure management.

Design/methodology/approach

The ProKnow‐C process is used to identify the opportunities in the literature and the MCDA‐C methodology is used in order to build up the environmental disclosure management (MED) model.

Findings

First the ProKnow‐C process was used to identify opportunities in the literature about environmental disclosure and later the MCDA‐C methodology was used to discover the opportunities and to show a process for generating actions to promote improvement in environmental disclosure.

Practical implications

The case study allowed the manager to develop an understanding of environmental disclosure, showing that organizational performance is the key factor according to managers' perception. This knowledge allowed the manager to identify what the company needs to improve in its environmental disclosure regarding the following aspects: targets for using water, energy program, management of effluent and waste, biodiversity, adaptation to emergency plans, training and environmental awareness, expanding the coverage of the certification process and increasing operational performance in specific indicators relating to the electricity sector (pruning control, fire and oil spill).

Originality/value

The structured process of the MCDA‐C methodology enabled a model to be built that showed graphically and numerically the systemic diagnosis of environment disclosure, allowing the manager to know the consequences of a decision a priori and to suggest a set of improvement actions.

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Article
Publication date: 11 November 2020

Katharine Dunbar Winsor

Fetal alcohol spectrum disorder (FASD) is a complex lifelong disorder impacting the brain and body. Individuals with FASD may require lifelong supports and are at a higher…

Abstract

Purpose

Fetal alcohol spectrum disorder (FASD) is a complex lifelong disorder impacting the brain and body. Individuals with FASD may require lifelong supports and are at a higher risk of experiencing adverse outcomes, including incarceration. Individuals with FASD face stigma related to FASD that impacts disclosure of the diagnosis and access to supports. The prevalence of FASD exceeds that of other developmental disabilities, yet it remains less visible and stigmatized.

Design/methodology/approach

Interviews conducted with health-care and justice professionals in a Canadian province explore their experiences attending to FASD and challenges of stigma.

Findings

While difficult to access, diagnosis provides a pathway to supports and is crucial in the criminal justice process. Visibility and invisibility in health and justice systems highlight the lack of understanding of FASD and surrounding stigma. When unaddressed, individuals with FASD face additional challenges stemming from a lack of information and strategies by professionals involved in their lives.

Originality/value

Stigma represents a significant and complex issue intertwined in understandings of FASD. This research explores this relationship and the mechanisms through which FASD stigma has impacts in health-care and justice settings.

Details

Advances in Dual Diagnosis, vol. 14 no. 1
Type: Research Article
ISSN: 1757-0972

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Article
Publication date: 28 February 2019

Elizabeth Kock, Andre Strydom, Deirdre O’Brady and Digby Tantam

The purpose of this paper is to explore the experience of intimate relationships of women who have been diagnosed with Autism in adulthood.

Abstract

Purpose

The purpose of this paper is to explore the experience of intimate relationships of women who have been diagnosed with Autism in adulthood.

Design/methodology/approach

Semi-structured interviews were used to interview eight participants. The data were transcribed and analysed using the interpretative phenomenological analysis method.

Findings

Four overall themes were identified. These included “Response to the diagnosis and receiving more information about Autism”, “Factors influencing dating behaviour”, “Sex and sexual experiences” and “Experience of intimate relationships as a person with Autism”.

Research limitations/implications

The results of this study have implications for both research and clinical practice as it highlights the areas in which women newly diagnosed with autism spectrum disorder (ASD) could benefit from support.

Practical implications

The study hopes to add to the limited existing research on adult women with ASD.

Originality/value

To date no similar research has investigated the same phenomenon through a similar method.

Details

Advances in Autism, vol. 5 no. 1
Type: Research Article
ISSN: 2056-3868

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Article
Publication date: 10 June 2014

Gabriel J. Culbert

About one in five men living with HIV in the USA passes through a correctional center annually. Jails and prisons are seen therefore as key intervention sites to promote…

Abstract

Purpose

About one in five men living with HIV in the USA passes through a correctional center annually. Jails and prisons are seen therefore as key intervention sites to promote HIV treatment as prevention. Almost no research, however, has examined inmates’ perspectives on HIV treatment or their strategies for retaining access to antiretroviral therapy (ART) during incarceration. The purpose of this paper is to describe the results of an exploratory study examining men's perceptions of and experiences with HIV care and ART during incarceration.

Design/methodology/approach

Semi-structured, in-depth interviews were conducted with 42 HIV positive male and male-to-female transgendered persons recently released from male correctional centers in Illinois, USA.

Findings

Interpersonal violence, a lack of safety, and perceived threats to privacy were frequently cited barriers to one's willingness and ability to access and adhere to treatment. Over 60 percent of study participants reported missed doses or sustained treatment interruption (greater than two weeks) because of failure to disclose their HIV status, delayed prescribing, intermittent dosing and out-of-stock medications, confiscation of medications, and medication strikes.

Research limitations/implications

Substantial improvements in ART access and adherence are likely to follow organizational changes that make incarcerated men feel safer, facilitate HIV status disclosure, and better protect the confidentiality of inmates receiving ART.

Originality/value

This study identified novel causes of ART non-adherence among prisoners and provides first-hand information about how violence, stigma, and the pursuit of social support influence prisoner's decisions to disclose their HIV status or accept ART during incarceration.

Details

International Journal of Prisoner Health, vol. 10 no. 2
Type: Research Article
ISSN: 1744-9200

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Book part
Publication date: 3 August 2011

Jennifer S. Singh

Purpose – This chapter discusses the proposed changes in the Diagnostic and Statistical Manual of Mental Disorders (DSM-V), which eliminates Asperger's disorder (AD) and…

Abstract

Purpose – This chapter discusses the proposed changes in the Diagnostic and Statistical Manual of Mental Disorders (DSM-V), which eliminates Asperger's disorder (AD) and replaces it as “autism spectrum disorder.” Implications of these changes on the identity of adults with AD and the influence of everyday life experiences will be addressed.

Methodology/approach – This research is based on 19 interviews with adults diagnosed or self-diagnosed with AD. Central themes surrounding issues of identity and everyday life experiences were determined using grounded theory approaches.

Findings – This study demonstrates how the diagnosis and self-diagnosis of AD is fused with individual identity. It also shows how Asperger identity is positively embraced. The proposed changes to eliminate AD in DSM-V threaten these assertions of Asperger identity, which could potentially enhance stigma experienced by people with AD. Regardless of its removal, Asperger identity must be considered within the broader context of people's everyday lives and how experiences in social interaction and communication can be strong agents of identity construction.

Social implications – The proposed changes to eliminate AD in DSM-V is a social issue that will impact individuals with Asperger's and their families, as well as health-care professionals, health insurers, researchers, state agencies, and educational providers.

Originality/value of paper – This chapter offers a unique insight into identity construction based on the diagnosis and self-diagnosis of AD.

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Book part
Publication date: 24 August 2005

Eri Shinoki and Ichiro Matsuda

The progress of genetic medicine has given rise to recent changes in the field of health care, such as expected benefits and potential risks for patients and their…

Abstract

The progress of genetic medicine has given rise to recent changes in the field of health care, such as expected benefits and potential risks for patients and their relatives. Individual genetic information can unlock many secrets within the genetic family and, sometimes the community to which he or she belongs. Therefore, the traditional duty of confidentiality owed by a health care professional to a patient has been challenged by the more serious discussions based on new genetics. Clinical geneticists providing genetic services must be aware of such complicated situations and whenever possible offer support to the patient (client) and their family members. Excluding eugenics and nonscientific perspectives, the Japanese government renamed and reworked “The Eugenic Protection Act” into the “Maternal Heath Protection Act” in 1996. From 1995 to 2003, the Japanese Society of Human Genetics (JSHG) revised guidelines for genetic testing three times. This process attempted to clarify indications for genetic testing, to focus on protection of individual genetic privacy and to deepen respect for familial relationships and responsibilities. The survey involving 221 JSHG approved clinical geneticist (response rate 54%) revealed that during last 5 years the number trying to do “non-directive” rather than “directive” counseling increased significantly. Although there is still in confusion on certain issues, such as data disclosure to relatives, the global bioethical view of new genetics is gaining Japanese geneticists’ acceptance.

Details

Taking Life and Death Seriously - Bioethics from Japan
Type: Book
ISBN: 978-0-76231-206-1

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