Implications for public health research of models and theories of disability: A scoping study and evidence synthesis
TL;DR: An ethical–empirical decision aid/checklist is developed that offers a critical framework with which to evaluate current research practice and is a resource for promoting more ethical and evidence-based public health research that is methodologically robust while being sensitive to the experiences of disability.
Abstract: Background: Public health interventions that are effective in the general population are often assumed to apply to people with impairments. However, the evidence to support this is limited and hence there is a need for public health research to take a more explicit account of disability and the perspectives of people with impairments.
Objectives: (1) To examine the literature on theories and models of disability; (2) to assess whether or not, and how, intervention studies of effectiveness could incorporate more inclusive approaches that are consistent with these theories and models; and (3) to use the findings to draw out implications for improving evaluative study designs and evidence-based practice.
Review methods: The project is a scoping review of the literature. The first stage examines theories and models of disability and reflects on possible connections between theories of disability and public health paradigms. This discussion is used to develop an ethical–empirical decision aid/checklist, informed by a human rights approach to disability and ecological approaches to public health. We apply this decision aid in the second stage of the review to evaluate the extent to which the 30 generic public health reviews of
interventions and the 30 disability-specific public health interventions include the diverse experiences of disability. Five deliberation panels were also organised to further refine the decision aid: one with health-care professionals and four with politically and socially active disabled people.
Results: The evidence from the review indicated that there has been limited public health engagement with theories and models of disability. Outcome measures were often insensitive to the experiences of disability. Even when disabled people were included, studies rarely engaged with their experiences in any meaningful way. More inclusive research should reflect how people live and ‘flourish’ with disability.
Limitations: The scoping review provides a broad appraisal of a particular field. It generates ideas for future practice rather than a definite framework for action.
Conclusions: Our ethical–empirical decision aid offers a critical framework with which to evaluate current research practice. It also offers a resource for promoting more ethical and evidence-based public health research that is methodologically robust while being sensitive to the experiences of disability.
Future work: Developing more inclusive research and interventions that avoid conceptualising disability as either a ‘burden’ or ‘problem’ is an important starting point. This includes exploring ways of refining and validating current common outcome measures to ensure that they capture a diverse range of disabling experiences, as well as generating evidence on meaningful ways of engaging a broad range of disabled
children and adults in the research process.
Citations
More filters
Book•
01 Jan 2009
TL;DR: A brief overview of the status of the Convention as at 3 August 2007 is presented and recent efforts of the United Nations and agencies to disseminate information on the Convention and the Optional Protocol are described.
Abstract: The present report is submitted in response to General Assembly resolution 61/106, by which the Assembly adopted the Convention on the Rights of Persons with Disabilities and the Optional Protocol thereto. As requested by the Assembly, a brief overview of the status of the Convention as at 3 August 2007 is presented. The report also contains a brief description of technical arrangements on staff and facilities made necessary for the effective performance of the functions of the Conference of States Parties and the Committee under the Convention and the Optional Protocol, and a description on the progressive implementation of standards and guidelines for the accessibility of facilities and services of the United Nations system. Recent efforts of the United Nations and agencies to disseminate information on the Convention and the Optional Protocol are also described.
2,115 citations
Journal Article•
1,449 citations
01 Jan 2015
TL;DR: The authors argue that feelings of self-worth, self-respect, and self-esteem are possible only if we are positively recognized for who we are, and that recognition is an integral component of a satisfactory modern theory of justice, as well as the means by which both historical and contemporary political struggles can be understood and justified.
Abstract: In recent decades, struggles for recognition have increasingly dominated the political landscape.1 Recognition theorists such as Charles Taylor (1994) and Axel Honneth (1995) seek to interpret and justify these struggles through the idea that our identity is shaped, at least partly, by our relations with other people. Because our identity is shaped in this way, it is alleged that feelings of self-worth, self-respect and self-esteem are possible only if we are positively recognised for who we are. Consequently, for many political theorists, recognition is an integral component of a satisfactory modern theory of justice, as well as the means by which both historical and contemporary political struggles can be understood and justified.
1,148 citations
480 citations
References
More filters
TL;DR: A 36-item short-form survey designed for use in clinical practice and research, health policy evaluations, and general population surveys to survey health status in the Medical Outcomes Study is constructed.
Abstract: A 36-item short-form (SF-36) was constructed to survey health status in the Medical Outcomes Study. The SF-36 was designed for use in clinical practice and research, health policy evaluations, and general population surveys. The SF-36 includes one multi-item scale that assesses eight health concepts: 1) limitations in physical activities because of health problems; 2) limitations in social activities because of physical or emotional problems; 3) limitations in usual role activities because of physical health problems; 4) bodily pain; 5) general mental health (psychological distress and well-being); 6) limitations in usual role activities because of emotional problems; 7) vitality (energy and fatigue); and 8) general health perceptions. The survey was constructed for self-administration by persons 14 years of age and older, and for administration by a trained interviewer in person or by telephone. The history of the development of the SF-36, the origin of specific items, and the logic underlying their selection are summarized. The content and features of the SF-36 are compared with the 20-item Medical Outcomes Study short-form.
33,857 citations
"Implications for public health rese..." refers methods in this paper
...The SF-36 has been designed by RAND Health (Santa Monica, CA) to gather information about population level health.(454) It is a QoL measure and has been adapted to the ICF....
[...]
TL;DR: The present scale has been devised for use only on patients already diagnosed as suffering from affective disorder of depressive type, used for quantifying the results of an interview, and its value depends entirely on the skill of the interviewer in eliciting the necessary information.
Abstract: Types of Rating Scale The value of this one, and its limitations, can best be considered against its background, so it is useful to consider the limitations of the various rating scales extant. They can be classified into four groups, the first of which has been devised for use on normal subjects. Patients suffering from mental disorders score very highly on some of the variables and these high scores serve as a measure of their illness. Such scales can be very useful, but have two defects: many symptoms are not found in normal persons; and less obviously, but more important, there is a qualitative difference between symptoms of mental illness and normal variations of behaviour. The difference between the two is not a philosophical problem but a biological one. There is always a loss of function in illness, with impaired efficiency. Self-rating scales are popular because they are easy to administer. Aside from the notorious unreliability of self-assessment, such scales are of little use for semiliterate patients and are no use for seriously ill patients who are unable to deal with them. Many rating scales for behaviour have been devised for assessing the social adjustment of patients and their behaviour in the hospital ward. They are very useful for their purpose but give little or no information about symptoms. Finally, a number of scales have been devised specifically for rating symptoms of mental illness. They cover the whole range of symptoms, but such all-inclusiveness has its disadvantages. In the first place, it is extremely difficult to differentiate some symptoms, e.g., apathy, retardation, stupor. These three look alike, but they are quite different and appear in different settings. Other symptoms are difficult to define, except in terms of their settings, e.g., mild agitation and derealization. A more serious difficulty lies in the fallacy of naming. For example, the term "delusions" covers schizophrenic, depressive, hypochrondriacal, and paranoid delusions. They are all quite different and should be clearly distinguished. Another difficulty may be summarized by saying that the weights given to symptoms should not be linear. Thus, in schizophrenia, the amount of anxiety is of no importance, whereas in anxiety states it is fundamental. Again, a schizophrenic patient who has delusions is not necessarily worse than one who has not, but a depressive patient who has, is much worse. Finally, although rating scales are not used for making a diagnosis, they should have some relation to it. Thus the schizophrenic patients should have a high score on schizophrenia and comparatively small scores on other syndromes. In practice, this does not occur. The present scale has been devised for use only on patients already diagnosed as suffering from affective disorder of depressive type. It is used for quantifying the results of an interview, and its value depends entirely on the skill of the interviewer in eliciting the necessary information. The interviewer may, and should, use all information available to help him with his interview and in making the final assessment. The scale has undergone a number of changes since it was first tried out, and although there is room for further improvement, it will be found efficient and simple in use. It has been found to be of great practical value in assessing results of treatment.
29,488 citations
TL;DR: A framework for conducting a scoping study is outlined based on recent experiences of reviewing the literature on services for carers for people with mental health problems and it is suggested that a wider debate is called for about the role of the scoped study in relation to other types of literature reviews.
Abstract: This paper focuses on scoping studies, an approach to reviewing the literature which to date has received little attention in the research methods literature. We distinguish between different types of scoping studies and indicate where these stand in relation to full systematic reviews. We outline a framework for conducting a scoping study based on our recent experiences of reviewing the literature on services for carers for people with mental health problems. Where appropriate, our approach to scoping the field is contrasted with the procedures followed in systematic reviews. We emphasize how including a consultation exercise in this sort of study may enhance the results, making them more useful to policy makers, practitioners and service users. Finally, we consider the advantages and limitations of the approach and suggest that a wider debate is called for about the role of the scoping study in relation to other types of literature reviews.
16,728 citations
"Implications for public health rese..." refers methods in this paper
...We mapped these papers according to the guidelines of Arksey and O’Malley(110) by providing a summary of each paper.(110) Methodologically, Campbell et al....
[...]
...To facilitate this, we used scoping charting methods to help us organise the material selected.(110) We focused on trying to understand if inclusion of disability was linked to the theoretical paradigm being used and if that influenced the methodology and the use of outcome measures....
[...]
TL;DR: The Medical Research Council's evaluation framework (2000) brought welcome clarity to the task and now the council has updated its guidance.
Abstract: Evaluating complex interventions is complicated. The Medical Research Council9s evaluation framework (2000) brought welcome clarity to the task. Now the council has updated its guidance
8,896 citations
TL;DR: Specific recommendations to clarify and enhance this methodology are outlined for each stage of the Arksey and O'Malley framework, to support the advancement, application and relevance of scoping studies in health research.
Abstract: Scoping studies are an increasingly popular approach to reviewing health research evidence. In 2005, Arksey and O'Malley published the first methodological framework for conducting scoping studies. While this framework provides an excellent foundation for scoping study methodology, further clarifying and enhancing this framework will help support the consistency with which authors undertake and report scoping studies and may encourage researchers and clinicians to engage in this process. We build upon our experiences conducting three scoping studies using the Arksey and O'Malley methodology to propose recommendations that clarify and enhance each stage of the framework. Recommendations include: clarifying and linking the purpose and research question (stage one); balancing feasibility with breadth and comprehensiveness of the scoping process (stage two); using an iterative team approach to selecting studies (stage three) and extracting data (stage four); incorporating a numerical summary and qualitative thematic analysis, reporting results, and considering the implications of study findings to policy, practice, or research (stage five); and incorporating consultation with stakeholders as a required knowledge translation component of scoping study methodology (stage six). Lastly, we propose additional considerations for scoping study methodology in order to support the advancement, application and relevance of scoping studies in health research. Specific recommendations to clarify and enhance this methodology are outlined for each stage of the Arksey and O'Malley framework. Continued debate and development about scoping study methodology will help to maximize the usefulness and rigor of scoping study findings within healthcare research and practice.
7,536 citations
"Implications for public health rese..." refers background in this paper
...Consultation with stakeholders is an essential but often neglected part of scoping methodologies.(115,117) We were committed to debating our findings with key stakeholders, particularly given that we believed it would prove useful in identifying gaps in the accommodation of disability in public health....
[...]