Perspectives of Portuguese People with Physical Disabilities Regarding Their Sexual Health: A Focus Group Study

The World Health Organization has considered sexual health as a major dimension of global health and a sexual right. However, the sexual health of people with physical disabilities is still poorly addressed by health and social care professionals, and it is very stigmatized by society. This study aimed to assess the perspectives of Portuguese people living with physical disabilities regarding issues affecting their sexual health. Nine women and 17 men with different physical disabilities participated in the study. Participants were recruited from a professional rehabilitation facility located in the North of Portugal and were assigned to four groups in one-hour sessions. Three main categories emerged from the content analysis: (1) meanings and beliefs regarding sexuality; (2) experiences of sexuality; (3) necessary changes. Despite the positive social changes towards sexuality, participants expressed that their sexual rights are still unfulfilled, as they live in a context that perpetuates their dependency. They pointed out low self-esteem, prejudice and social isolation, poor architectural accessibility and scarcity of financial support as some of the barriers to their lives and their sexual health. Finally, participants identified the main needs regarding their sexual health, such as: access to specialized information; training for health professionals. This study gives voice to people with physical disabilities and sheds light into both individual and contextual factors affecting their sexual health. Of utmost importance, this study draws attention to the need for reinforcing sexuality of people with disabilities in the social agenda and brings implications for future research and practice.     

End-of-life ethics and disability: differing perspectives on case-based teaching

The way in which medical professionals engage in bioethical issues ultimately reflects the type of care such patients are likely to receive. It is therefore critical for doctors and other health care professionals to have a broad understanding of disability. Our purpose in this paper is to explore ways of teaching bioethical issues to first year medical students by integrating alternative approaches. Such approaches include (a) the use of the narrative format, (b) the inclusion of a disability perspective, and (c) the presentation and facilitation of classes by people with disabilities. We consider how these new kinds of presentations are evaluated by students, faculty, people with disabilities and professional ethicists. We hope new knowledge may provide health care professionals with a greater understanding of the perspectives of patients with disabilities, who are confronted by conflicting ethical values and frameworks for decision-making in their interaction with such professionals.     

Gathering a sex history from a physically disabled adult

Sexuality is a health issue and should be integrated into clinical settings that focus on the rehabilitation needs of people with disabilities. It is as critical as any other activity of daily living and should be given an equal priority by the health care team. Finally, it is important for health professionals to have a good understanding of their own sexual issues if they are to be effective with their patients. Based on these assumptions, this article provides an overview and definition of basic sexual questions and concerns for people with disabilities. It provides an overview of the interview process with appropriate questions for both men and women as well as their partners.     

Uncovering health care inequalities among adults with intellectual and developmental disabilities

Even as attention is drawn to the increasing number of individuals who experience health inequalities in the United States, little is known about the health inequalities experienced by individuals with intellectual and developmental disabilities. Current disability research mainly focuses on physical disabilities. This article discusses the health disparities experienced by individuals with intellectual and developmental disabilities.The authors conducted focus groups with parents/guardians, self-advocates, and community support professionals and key informant interviews with health care professionals to assess the needs of this less frequently documented population. Results from this study indicate that individuals with intellectual and developmental disabilities face health care disparities and inequities in four areas: access, knowledge, communication, and quality.     

Explicit and implicit disability attitudes of occupational and physical therapy assistants

BackgroundReduction of explicit and implicit bias in healthcare providers is a critical issue faced by our society in moving toward more equitable and culturally appropriate health and rehabilitation care. Because resources for OT and PT services are limited and shortages in these professions exist, direct care provision by occupational and physical therapist assistants (OTA/PTA) is on the rise and valued in comprehensive rehabilitation practice. It is important to consider attitudes and biases of OTA/PTA, as they are directly involved in provision of rehabilitation services for people with disabilities.ObjectiveThis study examined the explicit and implicit disability attitudes of a large cross-section of OTA/PTA.MethodsSecondary data analysis was completed using data from 6113 OTA/PTA from the Project Implicit Disability Attitudes Implicit Association Test. Implicit attitudes were calculated and OTA/PTA explicit and implicit disability attitudes were compared. Results were further categorized using an adapted version of Son Hing et al.‘s two-dimensional model of prejudice.ResultsFindings revealed the majority of OTA/PTA reported having no explicit preference for people with disabilities or nondisabled people. However, the majority of OTA/PTA were aversive ableists, indicating low explicit and high implicit bias.ConclusionsThough explicit bias is lower in OTA/PTA, implicit bias is strong, indicating that people with disabilities face bias that may influence clinical interactions, and may be reproduced in professional education, practice, and policy. Concrete action must be taken to recognize and address disability bias to reduce health disparities in people with disabilities.     

Rehabilitation of Women From the Middle East Living With Chronic Pain—Perceptions From Health Care Professionals

Meeting patients from other countries constitutes a challenge for health care. The purpose of this study was to increase knowledge about tacit understandings of treatment in practice by determining the perceptions of chronic pain and rehabilitation directed to resettled women from the Middle East, from a variety of health care professionals within primary care. Based on the results, we find a need to support and increase knowledge among health care professionals to involve the patient and consider her beliefs, expectations, background, current life situation, and spirituality, and to involve family in rehabilitation.     

Predicting barriers to primary care for patients with disabilities: A mixed methods study of practice administrators

BackgroundPeople with disabilities continue to be identified as a group who experience disparate health/health care. They are less likely to engage in some health care services. Structural barriers are often identified as one of the reasons for the underutilization of some health care services by people with disabilities. However, to date no study has been conducted to understand why structural barriers persist twenty years after the Americans with Disabilities Act (ADA) became law.ObjectivesWe examined the relationship between primary care practice administrators' knowledge of the ADA and the number of accessibility barriers that patients with mobility disabilities might encounter.MethodsPrimary care practice administrators who were members of a medical management organization were surveyed between December 20, 2011, and January 17, 2012. A mixed methods research design was employed. Data were analyzed using a Guttman scale, linear and multiple linear regression.ResultsADA knowledge questions conformed to a valid Guttman scale. There was a significant inverse relationship between practice administrators' knowledge of the ADA and the number of barriers reported in their clinics. Age of the administrators and buildings built before 1993 were also significant predictors of the number of barriers.ConclusionThis study helps to identify medical practices that are more likely to have access barriers and have the greatest need for ADA compliance interventions. Results from this study highlight practice administrators' need for specific knowledge of the ADA as it applies to their medical practice. Efforts are needed to improve disability training for health professionals.     

Self-determination among community-dwelling older persons: explanatory factors

Background Although it is acknowledged that exercising self-determination in daily activities affects older people’s health and well-being, few studies have focused on the explanatory factors for self-determination in daily life. Objective To investigate explanatory factors for self-determination in the context of community-dwelling older persons. Method: This cross-sectional study combined two sets of data that included community-dwelling persons 80 years and older (n?=?456). A bivariate logistic regression was performed to analyse the association of self-determination and a set of explanatory factors. Results The final bivariate logistic regression model revealed five explanatory factors that were significantly associated with perceiving reduced self-determination: high education (OR?=?2.83), frailty (OR?=?2.70), poor self-rated health (OR?=?2.54), dissatisfaction with physical health (OR?=?6.50), and receiving help from public homecare service (OR?=?2.46). Conclusion Several explanatory factors related to the ageing body and environmental aspects were associated with reduced self-determination. To help older people maintain self-determination, healthcare professionals should consider using a person-centred and capability approach to care.     

Financial vulnerability among Medicare managed care enrollees

Consumer Assessment of Health Plans Survey (CAHPS) data show that Medicare managed care plans often receive low satisfaction scores from certain vulnerable populations. This article describes findings from a qualitative study with beneficiaries about their Medicare managed care experiences. Focus groups were stratified by participant race/ethnicity and self-described health status. Yet participants did not describe their concerns in terms of their race, ethnicity, or health condition, but rather their access to financial resources. Our findings suggest that researchers consider how socioeconomics creates health care vulnerability for racial and ethnic minorities, females, people with disabilities, and other economically marginalized persons.     

Neue Entwicklungen in der Selbsthilfeförderung

Currently there are about 70.000 self-help groups in Germany. Two-thirds are patient self-help organisations offering support for people with different kinds of disabilities. Patient self-help groups thus play a vital role in public health care. Recently, financial support of self-help groups became legally regulated. According to § 20 Sozialgesetzbuch V (SGB V) and § 29 Sozialgesetzbuch IX, respectively, national health insurances as well as public rehabilitation organisations are now obliged to support self-help groups. Although realisation of these measures is progressing slowly, they have strengthen the role of self-help groups in public health care and will allow these groups to expand their activities.     

Maternal Stress in Caring for Children with Feeding Disabilities: Implications for Health Care Providers

The purposes of this study were to compare the stress experienced by mothers of children with feeding disorders to the stress experienced by mothers of children with other childhood disabilities, to compare the stress experienced by mothers of children who are tube-fed with that of mothers of children with disabilities who do not require tube feeding, to ascertain the types of stressors that mothers in both groups experience, and to determine their coping resources. Subjects were mothers of children with disabilities who had recently been discharged or were receiving outpatient care from a private rehabilitation facility in a Midwestern city. The Short Form of the Questionnaire on Resources and Stress instrument and open-ended questions developed by the researchers were used. Results were analyzed using analysis of variance. Results indicate that mothers of children requiring tube feeding experienced significantly greater stress than mothers of children with disabilities who do not require tube feedings. Mothers of children requiring tube feeding also receive less support from family and friends. To assist dietitians, other health care professionals, and university instructors in developing family-centered treatment programs, we recommend including fathers, friends, or relatives in the care and feeding process; discovering ways to include the tube-fed child in family mealtime activities; increasing public awareness of tube-feeding issues; organizing support groups; and educating dietetics students about the unique stresses experienced by mothers of children who are tube-fed.     

Unmet health and rehabilitation needs of people with long‐term neurological conditions in Queensland,Australia

The survival and life expectancy rates of people with traumatic and degenerative neurological conditions are increasing, sometimes up to several decades. Yet compared to the general population, people with a disability continue to experience poorer health and are at greater risk of developing secondary health problems and facing barriers to services they require. These trends have significant implications for provision of health and rehabilitation services. In this study, the adequacy of health and rehabilitation services provided to people with long‐term neurological conditions and their unmet needs were explored from the perspectives of individual users, their nominated family members and key service providers. A qualitative research design with maximum variation sampling was used. Data were collected from semi‐structured interviews with 65 participants comprising 25 long‐term care service users, nominated family members or friends (n = 22) and care service providers (n = 18) in Queensland, Australia. All service users needed assistance with usual daily activities, and 22 were wheelchair dependent. The hours of funded personal care ranged from 2 to 201 hours per week. Data were analysed using framework analysis. Participants generally perceived that specialist medical and hospital services were adequate and satisfactory. They valued supportive health and rehabilitation professionals and receiving client‐centred physical rehabilitation. However, the majority of participants (n = 17) had perceived unmet needs for physical rehabilitation (n = 14), other health or rehabilitation services (n = 10) or counselling (n = 6). Community‐based physical maintenance rehabilitation was often perceived as inadequate, costly or inconveniently located. Participants highlighted the importance of personal and family counselling and information provision at time points such as diagnosis. The findings contribute to the limited international evidence on the gaps in health and rehabilitation services for people with neurological conditions receiving lifetime care services in the community. A continuum of integrated rehabilitation services to minimise avoidable impairments, optimise independence and functioning, and sustain quality of life is warranted.     

Using focus groups in disability research

Qualitative health service research has increasingly drawn on focus groups to inform health policy and intervention design. Focus groups provide opportunities to engage in the development and evaluation of health services for those service users who are often excluded from other forms of data collection. Increasingly, people with disabilities have been recognized as a marginalized group in health research. To provide appropriate accommodation and to maximize the utility of focus groups with people who have disabilities, careful preparation and planning are necessary. In this article, the authors highlight critical issues in conducting focus groups with people who have various impairments and provide advice on what to consider in terms of preparation and analysis.     

Building a future in disability and public health

The Disability Section is one of the newest sections in the American Public Health Association (APHA) and represents people with disabilities as an underserved population in all areas of public health practice. Issues involving people with disabilities cut across the overarching domains of education, training, research, and service. Therefore, every constituency group, interest area, or section in the APHA must recognize the importance of addressing disability-related issues in any initiative that focuses on improving the health of our nation. While achieving section status within APHA has given "disability" increased visibility in the largest and most prominent public health organization in the world, focusing our future on infusing disability content and perspectives on issues that impact people with disabilities in other areas of public health (e.g., environment, gerontological health, medical care, public health education and health promotion, etc.) requires an understanding of the other side's perspective. For this to occur, the Disability Section must be used as a base for recruiting and deploying health professionals who have an interest in a dyadic area of public health (e.g., medical care and disability, gerontological health and aging with a disability), and who can begin serving in leadership positions in other sections in APHA. Building capacity within and across the other sections in APHA will be our greatest challenge over these next few years. Our journey has just begun.     

Medicaid managed care meets developmental disabilities: proceed with caution

This article examines Medicaid managed care's potential impact on people with developmental disabilities. The authors discuss how the philosophy behind the skills/functional model of service provision for people with developmental disabilities is incongruent with the medical model of managed care. They discuss the policy issues that various states have had to face concerning Medicaid managed care's administration of health benefits for people with developmental disabilities. They extrapolate from the research on managed care to formulate potential models that states might use to administer the health benefits for people with developmental disabilities. Finally, the authors propose policy and research agendas to begin investigating Medicaid managed care's potential impact on people with developmental disabilities.     

Leadership/citizen participation: perceived impact of advocacy activities by people with physical disabilities on access to health care,attendant care and social services

Increasingly, the climate of shrinking health care resources will impact access to health care for the people most vulnerable-those with disabilities. This study looked at the perceived impact of leadership and participation by people with physical disabilities and at their ability to gain increased access to health care, attendant care and social services. Respondents were randomly selected from Canada and the United States, from a pool of participants with physical disabilities serving in leadership roles within disability organizations in either country. Responses from a mail-out survey questionnaire were tabulated using logistic regression procedures to identify the perceived impact of advocacy activity on improved access to health care, attendant care and social ser- vices. Findings suggest that those who participated in advocacy activities were significantly more likely to feel that their action improved access to health care resources, attendant care resources and social services. Advocates also perceived the impact of access for their family, local organizations, and at a regional/national level. This study highlights the value of consumer/citizen participation, and the vital role this action can play in collaboration with social work professionals for system changes, health resource planning and policy development.     

Patient autonomy: A view from the kitchen

In contemporary liberal ethics patient autonomy is often interpreted as the right to self-determination: when it comes to treatment decisions, the patient is given the right to give or withhold informed consent. This paper joins in the philosophical and ethical criticism of the liberal interpretation as it does not regard patient autonomy as a right, rule or principle, but rather as a practice. Patient autonomy, or so I will argue, is realised in the concrete activities of day-to-day health care, in the material and technological context of care, in arrangements of health care institutions, in the physical training of people with disabilities, as well as in the concrete activities of care-giving. This move from conversations in the consultation room to other sites and situations in the practice of care takes seriously the empirical reality of medical care and intends to show that patient autonomy is practically realised in a much richer and more creative way than most ethical theory seems to assume.     

An evaluation of health communication materials for individuals with disabilities developed by three state disability and health programs

BackgroundHealth communication increasingly has been recognized as an important part of public health practice that can help raise awareness of potential health risks, influence attitudes and beliefs, and motivate individuals to change unhealthy behaviors. Yet, few health communication messages exist that target people with disabilities. An evaluation was conducted to assess the relevance and usefulness of health communication materials developed by or disseminated in, or both, three state disability and health programs.MethodsHealth care providers and people with a variety of physical and sensory disabilities participated in the evaluation. Qualitative and quantitative data were collected in each of the three states using key informant interviews, focus groups, and a Web-based provider survey.ResultsState program staff reported that health communication strategies and messages should be developed to improve access and remove barriers to health care, provide access to facilities, empower consumers, and educate health care providers about the needs of people with disabilities. Several of these needs are consistent with the needs identified by consumers in the focus groups. Consumers indicated that improvements to the overall content and design of the state-developed health communication materials are needed, yet health care and human service providers who participated in the Web-based survey were generally satisfied with the materials. Nearly all providers reported being aware of the materials; however, consumers were not familiar with the state-developed materials reviewed by the focus groups.ConclusionsImprovements in the content and dissemination of health promotion materials designed by states are indicated. Implications for public health practice, including recommendations for improving future health communication materials, are addressed in this article.     

Communication between people with schizophrenia and their medical professionals: a participatory research project

The authors describe a participatory research project undertaken by a group of people with schizophrenia under the guidance of a university researcher. Participatory research involves members of the research group in meaningful participation in all stages of the research process. In this study, group members chose the topic-experiences with medical professionals-and method of data collection-in-depth interviews that they conducted with each other. They developed and performed a readers' theater presentation of the results and their recommendations for how they would like to be treated by medical professionals. The results indicate that good communication with medical professionals is essential to people with schizophrenia; it helps them accept the fact that they are ill and learn to live with the illness. The research offered a transformative experience to group members and is contributing to change in the practice of health care for people with severe mental illnesses.     

What is the problem of dependency? Dependency work reconsidered

Dependency is fundamental to caring relationships. However, given that dependency implies asymmetry, it also brings moral problems for nursing. In nursing theory and theories of care, dependency tends to be framed as a problem of self-determination—a tendency that is mirrored in contemporary policy and practice. This paper argues that this problem frame is too narrow. The aim of the paper is to articulate additional theoretical ‘problem frames’ for dependency and to increase our understanding of how dependency can be navigated in practices of long-term care. It does so by way of an empirical ethical analysis of how care professionals tackle the problem of dependency in group homes for people with intellectual disabilities. The paper refers to these practices of mitigating the problem of dependency as ‘dependency work’, a phrase borrowed from Eva Kittay. The analysis of dependency work suggests that for care professionals, dependency is a threefold problem: one of self-determination, one of parity and one of self-worth. These findings suggest that patient autonomy cannot be a full solution to the problem of dependency in long-term care relations. But they also show that dependency as such is not a problem that can be solved, as attempts to mitigate it only serve to tighten the dependency relationship further. This is the paradox of dependency work.