Attitudes toward genetic counseling and prenatal diagnosis among a group of individuals with physical disabilities

Few studies have been published on the attitudes of people with physical disabilities toward genetic counseling and prenatal diagnosis. Articles in the lay press and social science literature on this topic, mainly written by disability rights activists and advocates, imply opposition to prenatal diagnosis and the field of clinical genetics by the physically disabled population. In this study, 15 adults with physical disabilities were interviewed regarding their attitudes toward genetic counseling and prenatal diagnosis. Genetic counseling and prenatal diagnosis were generally viewed favorably by this sample of the disability community. Only a small percentage of the sample perceived genetics to be eugenic. Implications for genetic counseling and future research are discussed.     

Models of Disability: Implications for the Counseling Profession

Because of the increasing number of people with disabilities, counselors of all specialties and theoretical orientations will be called on to provide services to clients with disabilities. The authors present a brief overview of 4 major models of disability to provide an introduction to the varying definitions and causal and responsibility attributions of disability. Viewing the client with a disability as an individual with multiple identities, roles, functions, and environments facilitates the counseling process.     

A Qualitative Investigation of Somali Immigrant Perceptions of Disability: Implications for Genetic Counseling

This study examined the potential utility of genetic counseling services for Somali immigrants by investigating their perceptions of disability. Five Somali women participated in structured interviews that assessed their perceptions of the nature, causes, and impact of disability, and care for persons with disabilities. Using a Heideggerian Hermeneutics qualitative method of analysis, six major themes emerged: (1) disability refers to both physical and mental conditions, with mental disability generally thought of first and as more severe; (2) in Somalia, the family cares for disabled family members, treating them as if they were normal (3) there are major cultural differences between Somalia and the United States in how persons with disabilities are treated; (4) caring for a person with a disability is stressful for the family; (5) Allah determines whether or not a child will be disabled, and this cannot be predicted or altered; and (6) family is the primary life focus, and therefore, risk of disability does not affect reproductive decisions. These themes suggest that traditional genetic counseling may have limited utility for Somali immigrants. We recommend several modifications to traditional genetic counseling for Somali patients that also may be useful for populations that have similar beliefs.     

Effects of Counselor Disability and Reputation on Client Perceptions During a Career Counseling Session

This study examined the effects of three counselor influence factors—expertness, trustworthiness, and attractiveness—on participants' impressions of a counselor during a counseling analogue situation. Using a 2 (counselor disability) x 2 (level of training) factorial design, no significant differences were found with respect to counselor social influence. These results are interpreted relative to the literature on perceptions of counselors with physical disabilities.     

Talking about Disability in Prenatal Genetic Counseling: A Report of Two Interactive Workshops

Women are commonly offered testing in pregnancy to determine the health of their baby. An important component of informed decision-making about prenatal testing is provision of relevant, accurate, meaningful information concerning the conditions that are being tested for—many of which, such as Down syndrome, are associated with a varying degree of physical and intellectual disability. A range of health professionals, including genetic counselors, may provide information and support throughout the testing process, but available data suggest that discussion of disability is frequently absent or limited. To investigate genetic counselors’ perceptions of this situation and identify potential barriers to discussion we facilitated interactive workshops at the 2007 National Society of Genetic Counselors Annual Education Conference (NSGC) and the 2008 European Meeting on Psychosocial Aspects of Genetics (EMPAG). Working groups identified relevant psychosocial issues and impediments to discussion (NSGC) or used a two-part scenario to promote discussion (EMPAG) and reported findings in notes and a closing plenary discussion. Inductive content analysis revealed that participants considered informed decision making to be a major reason for presenting information about disabilities in prenatal genetic counseling and endorsed the value of including information about daily life with Down syndrome and other disabilities. However, they identified three broad types of impediments to such discussion: counseling issues concerning the most appropriate manner to discuss disability under the complex circumstances of prenatal genetic counseling, less than optimal training and experience in addressing these issues, and perceived limitations in the participants’ knowledge and understanding of life with disability. Our analysis of the responses from the workshop participants and additional thoughts on these issues have led us to develop recommendations for further research, training and clinical practice.     

The relationship between the severity and duration of physical disability and body esteem

The current study investigated the association between the severity and duration of physical disability and body esteem. A total of 748 participants (367 males, 381 females) who had a physical disability and 448 participants (171 males, 277 females) who were able-bodied participated in the study. The results demonstrated that people with more severe physical disability experienced lower levels of body esteem than people with milder physical disabilities and able-bodied people. The duration of physical disability was not related to levels of body esteem. Except for the face, people with physical disabilities devalued all aspects of their body more than able-bodied people. For males with physical disability, the unique predictors of high body esteem were decreased need for assistance, higher self-esteem, lower depression and higher sexual esteem; for females with physical disability, the unique predictors were higher self-esteem and higher sexual esteem. Overall, the study suggested that people with physical disability, particularly those with severe disabilities, may be particularly vulnerable to problems associated with their body esteem.     

Stigma of mental and physical illness and the use of mobile technology

Research has shown the stigma attached to mental disabilities, yet little research has directly compared the experiences of people with physical disabilities and those with mental disabilities. Not only are both conditions likely perceived as stigmatizing, but the pervasive use of mobile technology may be one means by which people with disabilities can manage and understand their disability. Four hundred and eighty-seven individuals with physical and/or psychological disabilities completed a survey examining whether they would be willing to use mobile technology to manage their disability and how stigmatizing they perceived their disability to be. Willingness to use mobile technology was related to the age of the sample as well as the type of disability. Individuals with psychological disabilities were more likely to use certain forms of mobile technology relative to those with physical disabilities. Observed differences between physical and psychological disabilities are discussed in terms of the symbolic interaction stigma model.     

Children's Understanding of the Causal Origins of Disability

This study explores children's understanding of the causal origins of disabilities. Using a forced-choice explanation task, children's understanding of social-psychological, physical, and biological causal explanations of disabilities was considered. We presented 79 children (26 4- to 5-year-olds, 26 6- to 7-year-olds, and 27 10- to 11-year-olds) with 4 vignettes describing a child with a particular disability (physical disability, blindness, learning disability, attention deficit hyperactivity disorder). Participants rated their agreement with a variety of causal explanations of disability. Results showed significant age, disability, and causal explanation differences in children's causal understandings of disability. Children of all ages showed a preference for physical and biological causes of disability and rejected social-psychological causal explanations. These findings highlight the usefulness of employing a forced-choice methodology to examine young children's concepts of the causal origins of disabilities.     

‘On-the ground’ strategy matrix for fostering quality participation experiences among persons with disabilities in community-based exercise programs

ObjectiveThe purposes of this paper are to (1) document the generation and refinement of a quality participation strategy list to ensure resonance and applicability within community-based exercise programs (CBEPs) for persons with physical and intellectual disabilities, and (2) identify theoretical links between strategies and the quality participation constructs.MethodsTo address purpose one, a list of strategies to foster quality participation among members was extracted from qualitative interviews with providers from nine CBEPs serving persons with physical disabilities. Next, providers from CBEPs serving persons with physical (n = 9) and intellectual disabilities (n = 6) were asked to identify the strategies used, and examples of their implementation, within their programs. Additional strategies noted by providers and in recent published syntheses were added to the preliminary list. A re-categorization and revision process was conducted. To address purpose two, 22 researchers with expertise in physical and/or intellectual disability, physical activity, participation and/or health behaviour change theory completed a closed-sort task to theoretically link each strategy to the constructs of quality participation.ResultsThe final list of 85 strategies is presented in a matrix. Each strategy has explicit examples and proposed theoretical links to the constructs of quality participation.ConclusionsThe strategy matrix offers a theoretically-meaningful representation of how quality participation-enhancing strategies can be practically implemented “on-the-ground” in CBEPs for persons with disabilities.     

Lesbians With Physical Disabilities: A Qualitative Study of Their Experiences With Counseling

The authors interviewed 25 lesbians with physical disabilities about their counseling experiences. Using a phenomenological qualitative approach, the authors identified 9 themes. Five themes addressed participants' perceptions of their counselors: general satisfaction or dissatisfaction, counselors' general effectiveness, counselors' awareness and education regarding sexual orientation and/or disability, discrimination and bias, and counselor identity. Three themes related to the participants' attempts to negotiate the counseling process: coming out or self‐disclosure, self‐advocacy, and accessibility/accommodations. The final theme related to depression.     

How Do Athletic Status and Disability Status Affect the Five-Factor Model of Personality?

This article addresses the issue of whether athletic status and disability status affect the Big Five personality dimensions (Surgency, Agreeableness, Conscientiousness, Emotional Stability, and Intellect/Openness to Experience). Scores were compared between groups of athletes and nonathletes who either did or did not have disabilities. Individuals with disabilities had higher scores for Emotional Stability and Conscien- tiousness and lower scores for Extraversion than did fully able respondents. Athletic status did not affect scores, although the time of onset of impairment had significant effects on scale scores. The personality model's internal psychometric properties (reliabilities, means, variances, correlational structure) among people with disabilities did not differ appreciably from fully able respondents. Implications are discussed.     

Staying in the Race: Counselor Visits and Job Search Confidence Among People With Disabilities

Support that helps job seekers maintain confidence might decrease unemployment rates among people with disabilities. In this study, clients described their employment barriers (disability, education, and work history) and then reported their job search confidence 3 times at 6‐month intervals. Their employment support agency provided information about the support (counseling visits, support hours, and financial resources) it delivered. Clients with more disabilities and education barriers experienced declines in job search confidence unless they received intensive levels of employment counseling. Three visits to a counselor maintained client confidence, and confidence improved only after 18 visits. Other service intensity indicators (support hours and financial resources) did not halt confidence declines.     

Extending Psychotherapeutic Strategies to People With Disabilities

In the last decade mind-body strategies have evolved to extend possible counseling approaches to persons with disabilities. Using Beatrice A. Wright's principles of attention to individual needs, respect for situational complexities, and flexibility, the authors reflect on the work of Milton H. Erickson, from which modern mind-body counseling interventions can be traced. Included are strategies to develop rapport, the therapeutic use of imagery, reframing and other paradoxical techniques, and the use of metaphor in counseling with people with disabilities.     

Minority Minds: Mental Disability and the Presumption of Value Neutrality

Elizabeth Barnes has recently developed an account of disability that is sensitive to the role of self-evaluation. To have a physical disability is, according to Barnes, to have a body that is merely different from the norm. Yet, as Barnes notes, some disabilities will genuinely frustrate some life plans. It may be the case, therefore, that a disability is instrumentally bad for a person and that acquiring one may be a genuine loss. Equally, however, a person may genuinely value a disability such that it is instrumentally good for them and that they experience the acquiring of it as a gain. Notably, Barnes explicitly restricts this analysis to physical disabilities, leaving open the status of mental disabilities. Nevertheless, Barnes does not rule out the extension of her model to this category, and she expresses a desire to see future work on other disabilities built upon it. This article takes up this challenge, making the case that to possess a mental disability is merely to possess a minority mind.     

Counselors With Disabilities: A Comment on the Special Feature

The aim of this comment is to focus more attention on the topic of counseling and disabilities. A literature review is presented on the question of whether clients perceive counselors with disabilities more positively or more negatively than they perceive counselors with no obvious physical disabilities. The results of the review provide tentative implications for counselors.     

Forgive and Forget? Forgiveness,Personality, and Wellness Among Counselors‐in‐Training

Forgiveness as a method of addressing “wounds” has been linked to enduring aspects of personality and improved physical and mental health outcomes. The aim of this study was to understand the effects of forgiveness on counseling students’ overall wellness. Counseling students (N= 115) from 5 universities completed self‐report measures of forgiveness, wellness, and personality. Results indicate that, when personality factors are controlled, forgiveness contributes a significant proportion (10%) of the variance in wellness for counseling students. Implications for counselor training and counseling are discussed.     

A job-seeking self-efficacy scale for people with physical disabilities: preliminary development and psychometric testing

People with disabilities are at an increased risk of unemployment. The role of interventions aiming to enhance the employment prospects of people with disabilities is receiving increased attention. However, evaluation is hampered by the paucity of measures specific to the needs of the target population. The purpose of the present study was to develop and conduct preliminary testing of the psychometric properties of a job-seeking self-efficacy (JSS) scale that reflected the experiences of people with physical disabilities. Job-seeking self-efficacy was defined as perceived ability to perform the skills involved in seeking employment that are salient to people with disabilities. Scale development and testing involved four studies and resulted in the 12-item JSS scale and six-item managing disability at interview (MDI) component, both of which were unidimensional and had high internal consistency. In addition, there was evidence of construct and concurrent validity. Greater jobseeking self-efficacy and perceived ability to manage disability at interview were associated with more positive psychological well-being. Only the MDI component was associated with physical functioning: lower perceived ability to manage disability at interview was associated with greater impairment of physical functioning. The pattern of associations supported the rationale for a separate component reflecting the need to resolve practical issues linked to access and availability of facilities before participation in the interview procedure per se .     

A Family Strengths Model of Adjustment to Disability for African American Clients

Sociocultural factors germane to African American families need to be recognized and incorporated into the counseling process of African Americans with disabilities. It is imperative that counseling professionals develop a thorough understanding of the family, community, and cultural ecologies of African Americans who are disabled. This article includes an analysis of the African American family system and its inherent strengths. A family strengths model of adjustment to disability for African American clients is presented, and potential applications of the model to the adjustment process are provided.     

stigma management strategies among women with physical disabilities: contrasting approaches of downplaying or claiming a disability status

The lived experiences of women with physical disabilities have received little research attention. To investigate a variety of social and interpersonal issues, in-depth tape-recorded interviews were conducted with 24 female students with physical disabilities. Findings concerning their experiences as students indicate that these women need to negotiate their disability status with able-bodied others. Respondents employ contrasting stigma management strategies of deflection, normalization, disidentifiers, and advocacy with students, faculty, and campus personnel. Women with physical disabilities either downplay or claim their disability status depending on the type of stigma (discredited or discreditable), the nature of the relationship with the audience (personal or formal), and the perceived reaction of the audience (accepting or questioning the legitimacy of the disability). Implications regarding conflicting presentations of self, divergence of strategies from normative expectations, and lack of group consciousness are discussed.     

Renegotiating Sexuality Following an Acquired Disability: Best Practices for Counselors

Acquired physical disabilities are a critical issue that confronts many adults today, and they are projected to continue to increase over the next several years. For many individuals with acquired physical disabilities, the disabilities affect sexuality, thus requiring a renegotiation of disability and sexuality. This article reviews the extant literature on physical disabilities and sexuality and provides best practices for counselors to effectively address the needs of this growing population.