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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 -
Brazilian Journal of Physical Therapy 2021Beliefs about the body and pain play a powerful role in behavioural and emotional responses to musculoskeletal pain. What a person believes and how they respond to their... (Review)
Review
BACKGROUND
Beliefs about the body and pain play a powerful role in behavioural and emotional responses to musculoskeletal pain. What a person believes and how they respond to their musculoskeletal pain can influence how disabled they will be by pain. Importantly, beliefs are modifiable and are therefore considered an important target for the treatment of pain-related disability. Clinical guidelines recommend addressing unhelpful beliefs as the first line of treatment in all patients presenting with musculoskeletal pain. However, many clinicians hold unhelpful beliefs themselves; while others feel ill-equipped to explore and target the beliefs driving unhelpful responses to pain. As a result, clinicians may reinforce unhelpful beliefs, behaviours and resultant disability among the patients they treat.
METHODS
To assist clinicians, in Part 1 of this paper we discuss what beliefs are; how they are formed; the impact they can have on a person's behaviour, emotional responses and outcomes of musculoskeletal pain. In Part 2, we discuss how we can address beliefs in clinical practice. A clinical case is used to illustrate the critical role that beliefs can have on a person's journey from pain and disability to recovery.
CONCLUSIONS
We encourage clinicians to exercise self-reflection to explore their own beliefs and better understand their biases, which may influence their management of patients with musculoskeletal pain. We suggest actions that may benefit their practice, and we propose key principles to guide a process of behavioural change.
Topics: Disabled Persons; Humans; Musculoskeletal Pain; Pain Management
PubMed: 32616375
DOI: 10.1016/j.bjpt.2020.06.003 -
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 -
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 -
Communications Biology Jul 2021July is Disability Pride Month here in New York, where part of the Communications Biology team is based. To mark this occasion, we are featuring a series of scientist...
July is Disability Pride Month here in New York, where part of the Communications Biology team is based. To mark this occasion, we are featuring a series of scientist interviews on the Nature Portfolio Ecology & Evolution Community site and wanted to elaborate on our motivations behind this post and our hopes for the future concerning the lived experience of disability in science.
Topics: Disabled Persons; Science
PubMed: 34272479
DOI: 10.1038/s42003-021-02411-8 -
Singapore Medical Journal Oct 2013Rehabilitation medicine is the medical specialty that integrates rehabilitation as its core therapeutic modality in disability management. More than a billion people... (Review)
Review
Rehabilitation medicine is the medical specialty that integrates rehabilitation as its core therapeutic modality in disability management. More than a billion people worldwide are disabled, and the World Health Organization has developed the International Classification of Functioning, Disability and Health as a framework through which disability is addressed. Herein, we explore paradigm shifts in neurorehabilitation, with a focus on restoration, and provide overviews on developments in neuropharmacology, rehabilitation robotics, virtual reality, constraint-induced therapy and brain stimulation. We also discuss important issues in rehabilitation systems of care, including integrated care pathways, very early rehabilitation, early supported discharge and telerehabilitation. Finally, we highlight major new fields of rehabilitation such as spasticity management, frailty and geriatric rehabilitation, intensive care and cancer rehabilitation.
Topics: Disability Evaluation; Disabled Persons; Humans; Practice Guidelines as Topic; Rehabilitation; World Health Organization
PubMed: 24154577
DOI: 10.11622/smedj.2013197 -
Annali Dell'Istituto Superiore Di Sanita 2020The huge increase of people with mental and intellectual disability worldwide, and the advocacy capacity achieved by these patients, which culminated in the Convention... (Review)
Review
The huge increase of people with mental and intellectual disability worldwide, and the advocacy capacity achieved by these patients, which culminated in the Convention on the Rights of Persons with Disabilities (CRPD), came along the shifts in the way governments deliver public services. In particular, in the last decades, many countries examined how to provide a person with disabilities an acceptable social functioning, improve wellbeing, according to the principles of equity, solidarity and participation. A new political and social-health model was born, called "welfare community", users are protagonists of their health project and the resources put in place assume an investment character on the community and its economic development. Personalisation of social and health services is also considered in many countries as a "new mode of care", although in different forms depending on financial aspect and recipients. The present article is a narrative review that examines and summarize international research and non-research material to survey the different implementation strategies of personalisation in different countries, with a special focus on Italy, in attempting to provide conceptual clarity about this topic in terms of opportunities and pitfalls.
Topics: Disabled Persons; Humans; Intellectual Disability; Italy; Mental Disorders; Patient-Centered Care; Precision Medicine
PubMed: 32567569
DOI: 10.4415/ANN_20_02_09 -
International Journal of Environmental... Oct 2022Active tourism improves human health and well-being regardless of age or disabilities. The paper analyses and describes current issues concerning the tourism of people... (Review)
Review
Active tourism improves human health and well-being regardless of age or disabilities. The paper analyses and describes current issues concerning the tourism of people with disabilities. The starting point is the currently insufficient availability of tourist offers for individuals with considerable motor dysfunctions. One of the causes for these limitations stems from deficiencies in transport means for people with disabilities. It was found that for a disabled passenger using public transport, it is crucial to consider its accessibility in the context of the entire transport system. Another cause is the limited popularity of innovative, atypical assistive equipment for people with disabilities. Those insights point out that novel assistive technologies need to be developed, as it is necessary to more effectively support the activity of people with disabilities in all areas of life, including tourism, as this enhances their social rehabilitation. This paper indicates the needs and describes and analyses examples of own original, innovative devices supporting the areas mentioned above of activity for people with disabilities. These analyses resulted in developing an algorithm to design innovative equipment, considerably expanding the tourism potential of people with motor disabilities. This design process focuses on the needs of people with disabilities and facilitates the development of novel classes of assistive technologies, thus promoting new areas of activity for all.
Topics: Humans; Tourism; Self-Help Devices; Disabled Persons
PubMed: 36361066
DOI: 10.3390/ijerph192114186 -
Social Science & Medicine (1982) Jan 1994Building on prior conceptual schemes, this article presents a sociomedical model of disability, called The Disablement Process, that is especially useful for...
Building on prior conceptual schemes, this article presents a sociomedical model of disability, called The Disablement Process, that is especially useful for epidemiological and clinical research. The Disablement Process: (1) describes how chronic and acute conditions affect functioning in specific body systems, generic physical and mental actions, and activities of daily life, and (2) describes the personal and environmental factors that speed or slow disablement, namely, risk factors, interventions, and exacerbators. A main pathway that links Pathology, Impairments, Functional Limitations, and Disability is explicated. Disability is defined as difficulty doing activities in any domain of life (from hygiene to hobbies, errands to sleep) due to a health or physical problem. Feedback effects are included in the model to cover dysfunction spirals (pernicious loops of dysfunction) and secondary conditions (new pathology launched by a given disablement process). We distinguish intrinsic disability (without personal or equipment assistance) and actual disability (with such assistance), noting the scientific and political importance of measuring both. Disability is not a personal characteristic, but is instead a gap between personal capability and environmental demand. Survey researchers and clinicians tend to focus on personal capability, overlooking the efforts people commonly make to reduce demand by activity accommodations, environmental modifications, psychological coping, and external supports. We compare the disablement experiences of people who acquire chronic conditions early in life (lifelong disability) and those who acquire them in mid or late life (late-life disability). The Disablement Process can help inform research (the epidemiology of disability) and public health (prevention of disability) activities.
Topics: Activities of Daily Living; Disabled Persons; Female; Humans; Male; Models, Theoretical; Research
PubMed: 8146699
DOI: 10.1016/0277-9536(94)90294-1 -
Journal of Bioethical Inquiry Sep 2022A key question in disability studies, philosophy, and bioethics concerns the relationship between disability and well-being. The mere difference view, endorsed by...
A key question in disability studies, philosophy, and bioethics concerns the relationship between disability and well-being. The mere difference view, endorsed by Elizabeth Barnes, claims that physical and sensory disabilities by themselves do not make a person worse off overall-any negative impacts on welfare are due to social injustice. This article argues that Barnes's Value Neutral Model does not extend to intellectual disability. Intellectual disability is (1) intrinsically bad-by itself it makes a person worse off, apart from a non-accommodating environment; (2) universally bad-it lowers quality of life for every intellectually disabled person; and (3) globally bad-it reduces a person's overall well-being. While people with intellectual disabilities are functionally disadvantaged, this does not imply that they are morally inferior-lower quality of life does not mean lesser moral status. No clinical implications concerning disability-based selective abortion, denial of life-saving treatment, or rationing of scarce resources follow from the claim that intellectual disability is bad difference.
Topics: Abortion, Eugenic; Bioethics; Disabled Persons; Female; Humans; Intellectual Disability; Pregnancy; Quality of Life
PubMed: 35679004
DOI: 10.1007/s11673-022-10190-y