-
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 -
Disability and Rehabilitation Mar 1997This paper critically reviews medical approaches to the identification and treatment of disability. The medical model locates disability within individuals. By contrast,... (Review)
Review
This paper critically reviews medical approaches to the identification and treatment of disability. The medical model locates disability within individuals. By contrast, this paper argues that disability cannot be understood outside its social context. As such, some of the assumptions about normality and difference which underpin traditional approaches to the diagnosis and treatment of disabled people are challenged. If it is accepted that disability is located not solely within the mind or body of an individual, but rather in the relationship between people with particular bodily and intellectual differences and their social environment, then greater focus may be placed on ameliorating disability through changes in social policy, culture and institutional practices.
Topics: Disabled Persons; Humans; Interpersonal Relations; Models, Theoretical; Social Environment
PubMed: 9134350
DOI: 10.3109/09638289709166831 -
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 -
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 -
Disability and Rehabilitation Jun 2023Adults with acquired neurological disability often require paid disability support to live an ordinary life. However, little is known about what facilitates quality...
PURPOSE
Adults with acquired neurological disability often require paid disability support to live an ordinary life. However, little is known about what facilitates quality support. This study aims to explore the lived experience of people with acquired neurological disability to develop an understanding of the factors that influence the quality of support.
METHODS
Guided by constructivist grounded theory, in-depth qualitative interviews were conducted with 12 adults with acquired neurological disability. Data analysis followed an iterative process to develop themes and subthemes and explore relations between themes to build a model of quality support.
RESULTS
Nine key factors emerged in the dyadic space, with the support worker recognising the person as an individual as foundational to quality support. Beyond the dyadic space, three broader contextual factors were identified as influential on the quality of support by mechanism of facilitating or constraining the person with disability's choice. Finally, the provision of quality support was characterised by the person feeling in control.
CONCLUSIONS
Findings support the rights of people with disability to quality, individualised support, and a need for interventions to better prepare the disability workforce to deliver support in line with the needs and preferences of people with acquired neurological disability. IMPLICATIONS FOR REHABILITATIONTo provide quality support, disability support workers need to recognise the person with disability as an individual and the expert in their support needs and preferences.The quality of paid disability support is primarily determined by the way the person with disability and support worker work together in the dyadic space.Ensuring people with acquired neurological disability have authentic choice over their support arrangements and daily living is critical to facilitate quality support, and in turn help the person with disability to feel in control.
Topics: Humans; Adult; Grounded Theory; Disabled Persons
PubMed: 35727953
DOI: 10.1080/09638288.2022.2086636 -
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 -
Journal of Rehabilitation Medicine Jul 2017Disability has a profound impact, both on those who live with it and on society that responds to the needs of people experiencing disability. Society has a primary...
Disability has a profound impact, both on those who live with it and on society that responds to the needs of people experiencing disability. Society has a primary obligation to respond to the impact of disability. Rehabilitation has an essential role to play here; but its relationship to disability embodies a broader social ambiguity about what it means to experience disability. On the one hand, disability is a mark of a minority group persons with disabilities, which has, historically, been socially disadvantaged. On the other, disability is a matter of how health conditions and associated impairments interact with the physical and social world to create limits on what people can do or become. However, just as health problems are universal over the life course, so too is disability. Everyone experiences disability. This paper explores the historical underpinnings of these two perspectives on disability, in particular how they impact on rehabilitation practice and policy. After surveying the social consequences of these perspectives, the paper attempts to reconcile them in order to enhance the overall effectiveness and relevance of the social response to disability.
Topics: Disabled Persons; Humans
PubMed: 28661547
DOI: 10.2340/16501977-2251 -
Social Science & Medicine (1982) Apr 1999This paper builds on the work of Sol Levine to examine a disability paradox: Why do many people with serious and persistent disabilities report that they experience a...
This paper builds on the work of Sol Levine to examine a disability paradox: Why do many people with serious and persistent disabilities report that they experience a good or excellent quality of life when to most external observers these individuals seem to live an undesirable daily existence? The paper uses a qualitative approach to develop an explanation of this paradox using semi-structured interviews with 153 persons with disabilities. 54.3% of the respondents with moderate to serious disabilities reported having an excellent or good quality of life confirming the existence of the disability paradox. Analysis of the interviews reveals that for both those who report that they have a good and those who say they have a poor quality of life, quality of life is dependent upon finding a balance between body, mind and spirit in the self and on establishing and maintaining an harmonious set of relationships within the person's social context and external environment. A theoretical framework is developed to express these relationships. The findings are discussed for those with and without disabilities and directions are given for future research.
Topics: Adolescent; Adult; Aged; Attitude; Disabled Persons; Female; Humans; Male; Middle Aged; Models, Theoretical; Quality of Life
PubMed: 10390038
DOI: 10.1016/s0277-9536(98)00411-0 -
Medical Care Sep 2020In 2003, national disability-associated health care expenditures (DAHE) were $398 billion. Updated estimates will improve our understanding of current DAHE.
BACKGROUND
In 2003, national disability-associated health care expenditures (DAHE) were $398 billion. Updated estimates will improve our understanding of current DAHE.
OBJECTIVE
The objective of this study was to estimate national DAHE for the US adult population and analyze spending by insurance and service categories and to assess changes in spending over the past decade.
RESEARCH DESIGN
Data from the 2013-2015 Medical Expenditure Panel Survey were used to estimate DAHE for noninstitutionalized adults. These estimates were reconciled with National Health Expenditure Accounts (NHEA) data and adjusted to 2017 medical prices. Expenditures for institutionalized adults were added from NHEA data.
MEASURES
National DAHE in total, by insurance and service categories, and percentage of total expenditures associated with disability.
RESULTS
DAHE in 2015 were $868 billion (at 2017 prices), representing 36% of total national health care spending (up from 27% in 2003). DAHE per person with disability increased from $13,395 in 2003 to $17,431 in 2015, whereas nondisability per-person spending remained constant (about $6700). Public insurers paid 69% of DAHE. Medicare paid the largest portion ($324.7 billion), and Medicaid DAHE were $277.2 billion. More than half (54%) of all Medicare expenditures and 72% of all Medicaid expenditures were associated with disability.
CONCLUSIONS
The share of health care expenditures associated with disability has increased substantially over the past decade. The high proportion of DAHE paid by public insurers reinforces the importance of public programs designed to improve health care for people with disabilities and emphasizes the need for evaluating programs and health services available to this vulnerable population.
Topics: Activities of Daily Living; Adult; Age Factors; Aged; Chronic Disease; Disabled Persons; Female; Health Expenditures; Humans; Male; Medicaid; Medicare; Middle Aged; Physical Functional Performance; Racial Groups; Residence Characteristics; Sex Factors; Social Work; Socioeconomic Factors; United States; Work Capacity Evaluation
PubMed: 32826747
DOI: 10.1097/MLR.0000000000001371 -
Journal of Occupational Rehabilitation Mar 2014As paid work is the occupation that people spend the most amount of their time doing, it is an important provider of personal meaning in their lives. This meaning has... (Review)
Review
PURPOSE
As paid work is the occupation that people spend the most amount of their time doing, it is an important provider of personal meaning in their lives. This meaning has been shown to vary from person to person and to be important to health and well being. When a person is unable to work due to a disabling condition, it is unclear whether this meaning remains or is replaced by other meanings. The purpose of this scoping review was to explore what was known in the existing literature on what work means to those with work disability.
METHODS
The review involved identifying and selecting relevant studies, charting the data and collating and summarizing the results.
RESULTS
Fifty-two studies explored the meaning of work for those with cancer, mental illness, musculoskeletal disorders, brain injuries, paraplegia, and AIDS. The studies revealed that, for most, work continued to be meaningful and important. Common themes across all types of disability included work being a source of identity, feelings of normality, financial support, and socialization. These meanings were found to be both motivating for return to work and health promoting. Conversely, a small number of studies found that the meanings and values ascribed to work changed following disability. New meanings, found either at home or in modified work, replaced the old and contributed to new identities.
CONCLUSIONS
The exploration of the meaning of work has been shown to provide important understanding of the experience of work and disability. This understanding can guide rehabilitation professionals in their interventions with the work disabled.
Topics: Disabled Persons; Employment; Humans; Male; Middle Aged; Return to Work; Work; Workplace
PubMed: 23519737
DOI: 10.1007/s10926-013-9436-y