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Journal of General Internal Medicine Jul 2019Patient-centered care for people with disability requires effective communication and compliance with the Americans with Disabilities Act (ADA).
BACKGROUND
Patient-centered care for people with disability requires effective communication and compliance with the Americans with Disabilities Act (ADA).
OBJECTIVE
To understand physicians' perspectives on communication experiences with people with disability.
DESIGN
Twenty semi-structured individual interviews. Interview recordings were transcribed verbatim for analysis.
SETTING
Massachusetts, October 2017-January 2018.
PARTICIPANTS
Twenty physicians ranging from 8 to 51 years in practice in primary care or 4 other specialties.
MEASUREMENTS
Commonly expressed themes around communication with people with disability.
RESULTS
Concerns coalesced around 4 broad categories: communication experiences with people who are deaf or hard of hearing, communication with people who are blind or have vision impairment, communication with people who have intellectual disability, and recommendations for improving communication. Although participants in this study reported various efforts to communicate effectively with patients with hearing or vision loss or intellectual disability, many gaps appear to remain, as well as instances where physicians' preferences run counter to patients' wishes and the ADA. Examples include physicians' preferences for remote, online sign language interpreters despite patients desiring in-person interpreters and suggesting that patients arrange for their own interpreters. Few educational materials are available in braille, and electronic medical records may not allow documents to be printed in large font for persons with low vision. Communicating with patients with intellectual disability raised particular concerns, with participants often preferring to interact with caregivers and minimal efforts to involve patients.
CONCLUSIONS
Effective communication is necessary for ensuring the quality of health care for people with disability, and it is legally required under the ADA. Our results suggest that important gaps may remain in ensuring effective communication, and some practicing physicians could benefit from formal training in effective methods for communicating with patients with disability.
Topics: Adult; Aged; Communication; Communication Barriers; Disabled Persons; Female; Humans; Male; Middle Aged; Patient-Centered Care; Physician-Patient Relations; Physicians
PubMed: 30887435
DOI: 10.1007/s11606-019-04911-0 -
Disability and Rehabilitation Jun 2019Existing research has explored the barriers and facilitators of physical activity participation for young people with disability from the perspective of young people and...
Barriers and facilitators to physical activity participation for children with physical disability: comparing and contrasting the views of children, young people, and their clinicians.
PURPOSE
Existing research has explored the barriers and facilitators of physical activity participation for young people with disability from the perspective of young people and their families. However, little research has investigated the views of clinicians who facilitate access to physical activity programs and compared this with their child client's perspectives.
METHOD
Interviews were conducted with six allied health and sports development professionals associated with a programme which supports access to recreation and sporting activities. Interviews explored facilitators and barriers to physical activity experienced by their clients. Open-ended survey questions investigating barriers and facilitators of physical activity participation were also completed by 28 young people with disability aged 10-17 years who were clients of this programme.
RESULTS
The most salient facilitator of participation described by clinicians was "planning programs to promote success and inclusion." Young people described two main facilitators; "the right people make physical activity fun!" and, similar to clinicians, "appropriate and inclusive opportunities to be active." The most salient barriers identified by clinicians were "practical limitations" and "time constraints and priorities," and a novel barrier raised was "whose choice?" The "lack of accessible and inclusive opportunities" was the most pertinent barrier for young people.
CONCLUSIONS
Clinicians should determine both parent and young person commitment to a physical activity before enrolment. Lack of commitment can act as a barrier to physical activity and a more appropriate intervention could focus on increasing awareness of the benefits of being active, drawing on a Stages of Change based model of service delivery. Implications for rehabilitation Rehabilitation professionals seeking to increase physical activity participation for young people with physical disability should discuss readiness and motivation to change prior to any activity/sports referral. Different behaviour change processes are required for young people and for their parents and both are important to achieve physical activity participation. Regular monitoring is important to identify on-going physical and psychological barriers to participation, even for those who were already active. Clinicians should be aware that teenagers may be more ready to be active as they develop greater independence and should raise awareness of the benefits of physical activity.
Topics: Adolescent; Architectural Accessibility; Attitude of Health Personnel; Attitude to Health; Australia; Cerebral Palsy; Child; Communication Barriers; Disabled Children; Disabled Persons; Exercise; Female; Humans; Male; Motivation; Needs Assessment; Social Participation; Sports for Persons with Disabilities
PubMed: 29382235
DOI: 10.1080/09638288.2018.1432702 -
BMC Medicine Jan 2018Disability as a health outcome deserves more attention than it has so far received. With people living longer and the epidemiological transition from infectious to...
Disability as a health outcome deserves more attention than it has so far received. With people living longer and the epidemiological transition from infectious to noncommunicable diseases as the major cause of health burden, we need to focus attention on disability - the non-fatal impact of heath conditions - over and above our concern for causes of mortality.With the first Global Burden of Disease study, WHO provided a metric that enabled the comparison of the impact of diseases, drawing on a model of disability that focused on decrements of health. This model has since been elaborated in the International Classification of Functioning, Disability and Health as being either a feature of the individual or arising out of the interaction between the individual's health condition and contextual factors. The basis of WHO's ongoing work is a set of principles: that disability is a universal human experience; that disability is not determined solely by the underlying health condition or predicated merely on the presence of specific health conditions; and finally, that disability lies on a continuum from no to complete disability. To determine whether interventions at individual or population levels are effective, an approach to disability measurement that allows for an appropriate and fair comparison across health conditions is needed. WHO has designed the Model Disability Survey (MDS) to collect information relevant to understand the lived experience of disability, including the person's capacity to perform tasks actions in daily life, their actual performance, the barriers and facilitators in the environment they experience, and their health conditions. As disability gains prominence within the development agenda in the United Nations Sustainable Development Goals, and the implementation of the United Nations Convention on the Rights of Persons with Disabilities, the MDS will provide the data to monitor the progress of countries on meeting their obligations.The lesson learned from WHO's activities is that disability is a universal human experience, in the sense that everyone can be placed on a continuum of functioning and either currently experiences or is vulnerable to experiencing disability over the course of their lives. This understanding of disability is the key to mainstreaming disability within the public discourse.
Topics: Comprehension; Disability Evaluation; Disabled Persons; Environment; Female; Health Status Indicators; Humans; International Classification of Functioning, Disability and Health; Male; Patient Rights; Public Health; Surveys and Questionnaires; Thinking; United Nations; World Health Organization
PubMed: 29370847
DOI: 10.1186/s12916-017-1002-6 -
Physical Medicine and Rehabilitation... Nov 2019A profound need for rehabilitation services exists, especially in developing countries. This article highlights the role of the epidemiology of disability in addressing... (Review)
Review
A profound need for rehabilitation services exists, especially in developing countries. This article highlights the role of the epidemiology of disability in addressing this critical need. The article concludes that national and global disability epidemiology statistics inform stakeholder development of rehabilitation policies and programs necessary to meet the global need for rehabilitation, directly supporting the World Health Organization Rehabilitation 2030: Call for Action and United Nations Sustainable Development Goal 3 to "ensure healthy lives and promote well-being for all at all ages."
Topics: Cost of Illness; Disability Evaluation; Disabled Persons; Epidemiology; Humans; International Classification of Functioning, Disability and Health; World Health Organization
PubMed: 31563163
DOI: 10.1016/j.pmr.2019.07.012 -
Physical Medicine and Rehabilitation... Aug 2019
Topics: Disability Evaluation; Disabled Persons; Forensic Medicine; Humans; Physical and Rehabilitation Medicine; Workers' Compensation
PubMed: 31227144
DOI: 10.1016/j.pmr.2019.05.001 -
Pediatric Clinics of North America Apr 2017Healthy sexual development is important for adolescents with and without disabilities, yet the topic of sexuality is often ignored in the disabled population.... (Review)
Review
Healthy sexual development is important for adolescents with and without disabilities, yet the topic of sexuality is often ignored in the disabled population. Adolescents with mild or moderate degrees of disability have rates of sexual activity and reproductive health needs comparable to their typically developing peers. Their need for support, risk reduction, and education in sexual health may exceed that of their peers. The medical provider may support healthy sexual development through education, anticipatory guidance, menstrual and contraceptive management, and by expanding the notion of sexuality to include a broader conceptualization of sexual behavior and expression.
Topics: Adolescent; Adolescent Development; Disabled Persons; Female; Health Promotion; Humans; Male; Psychosexual Development; Sex Education; Sexual Behavior; Social Support
PubMed: 28292457
DOI: 10.1016/j.pcl.2016.11.011 -
Disability and Rehabilitation Mar 2019Current rehabilitation models emphasize therapy that attempts to return to "normal" the lives of persons who are disabled. An opportunity is available to scrutinize... (Review)
Review
PURPOSE
Current rehabilitation models emphasize therapy that attempts to return to "normal" the lives of persons who are disabled. An opportunity is available to scrutinize whether this recovery orientation of rehabilitation is necessarily optimal.
METHOD
This conceptual article uses reasoning, informed by experience and a nonsystematic review of literature across diverse disciplines.
RESULTS
For some persons with disability, optimizing recovery might be unwanted or insufficient. To expand rehabilitation, we append the Latin "ultra", beyond, to "habilitare", make fit. The resulting term, "ultrabilitate", commits to human flourishing that moves persons toward, around or beyond recovery of particular functioning.
CONCLUSIONS
By expanding the scope of disability management, ultrabilitation could inform therapy selection and facilitate human flourishing. Empirical research is needed to test our ideas. Implications for rehabilitation Despite significant progress, rehabilitation limits some people with disabilities. Modern health systems still benchmark therapy for rehabilitation against "normal" or species-typical standards to aid recovery. "Ultrabilitation", meaning "beyond fitness", promotes flourishing, either without an interest in recovery or in moving toward, beyond or around recovery. Biological, social and technological conditions are needed to support ultrabilitation. Ultrabilitation complements rehabilitation when rehabilitation is not sufficient to optimize functioning and personal growth.
Topics: Disabled Persons; Humans; Philosophy, Medical; Recovery of Function; Rehabilitation
PubMed: 29179594
DOI: 10.1080/09638288.2017.1406997 -
History of Psychiatry Dec 2014How does society imagine mental illness? Does this shift radically over time and with different social attitudes as well as scientific discoveries about the origins and...
How does society imagine mental illness? Does this shift radically over time and with different social attitudes as well as scientific discoveries about the origins and meanings of mental illness? What happens when we begin to think about mental illness as madness, as a malleable concept constantly shifting its meaning? We thus look at the meanings associated with 'general paralysis of the insane' in the nineteenth century and autism today in regard to disability. In this case study we examine the claims by scholars such as the anthropologist Emily Martin and the psychiatrist Kay Jamison as to the relationship between mental illness, disability and creativity. Today, the health sciences have become concerned with mental illness as a form of disability. How does this change the meaning of madness for practitioners and patients?
Topics: Autistic Disorder; Disabled Persons; History, 19th Century; History, 20th Century; History, 21st Century; History, Ancient; History, Medieval; Humans; Mental Competency; Mental Disorders; Neurosyphilis; Psychiatry; United States
PubMed: 25395442
DOI: 10.1177/0957154X14545846 -
Harefuah Apr 2022The prevalence of disabilities in the general population is not neglectable and gaps in providing quality health service persist between people with and without... (Review)
Review
The prevalence of disabilities in the general population is not neglectable and gaps in providing quality health service persist between people with and without disabilities. Though life expectancy of persons with disability is increasing, there is an excess of preventable morbidity and mortality. The person with disability has needs and expectations and should be partners in the process of prevention, treatment and follow-up of their health status. According to research, the medical care for the patient with disability does not meet the standards derived from the evidence. Patient safety is a core domain in the quality of care and that is true for the care of persons with disability. Communication, stigma, lack of knowledge, skills and training, are major inhibitors of the provision of high-quality care for the people with disabilities and are considered to be factors responsible for the high incidence of adverse and medical errors in this group of patients. Approaching these topics with critical attention is needed across the span of medical care from the community to the hospital and from prevention to the more complex and sophisticated care offered to the patient with disability.
Topics: Communication; Disabled Persons; Hospitals; Humans; Prevalence; Quality of Health Care
PubMed: 35466612
DOI: No ID Found -
The Journal of Nutrition, Health & Aging Mar 2024This Mini-Review showcases the latest evidence on rehabilitation opportunities for older people with multimorbidity and frailty. There is growing evidence, that a... (Review)
Review
This Mini-Review showcases the latest evidence on rehabilitation opportunities for older people with multimorbidity and frailty. There is growing evidence, that a person-centered and contextualized rehabilitation approach may offer benefits, not only in the context of preserving mobility, but especially targeting social participation. Modern rehabilitation aligns with the bio-psycho-social model of the International Classification of Functioning, Disability and Health (ICF), emphasizing the individual and collaboratively determined definition of personalized rehabilitation goals at the activity and participation level. Further studies are warranted to evaluate objective outcome-measurement tools within the domains of activity and participation.
Topics: Humans; Aged; Frailty; Disabled Persons; Social Participation; Disability Evaluation; Activities of Daily Living
PubMed: 38492946
DOI: 10.1016/j.jnha.2023.100012