Assessing the stigma content of urinary incontinence intervention outcome measures

The goal of this narrative review is to evaluate the efficacy of available questionnaires for assessing the outcomes of ‘‘continence difficulty’’ interventions and to assess the selected questionnaires concerning aspects of stigmatization. The literature was searched for research related to urinary incontinence, as well as questionnaires and rating scale outcome measurement tools. The following sources were searched: Cochrane Library, EMBASE, Medline, and PubMed. The following keywords were used separately or in combination: ‘‘Urinary incontinence,’’ ‘‘therapy,’’ ’’treatment outcome,’’ ‘‘patient satisfaction,’’ ‘‘quality of life,’’ ‘‘systematic reviews,’’ ‘‘aged 65þ years,’’ and ‘‘questionnaire.’’ The search yielded 194 references, of which 11 questionnaires fit the inclusion criteria; 6 of the 11 questionnaires did not have any stigma content and the content regarding stigma that was identified in the other five was very limited. A representative model of how stigma impacts continence difficulty interventions was proposed. While the 11 incontinence specific measurement tools that were assessed were well researched and designed specifically to measure the outcomes of incontinence interventions, they have not been used consistently or extensively and none of the measures thoroughly assess stigma. Further studies are required to examine how the stigma associated with continence difficulty impacts upon health care interventions

Quality of life tools to inform co-design in the development of assistive technologies for people with dementia and their carer

A number of tools exist to measure quality of life (QoL) for people with dementia (PwD). A selection of existing measures are summarised, obtained from an online literature survey, comprising of scales administered either by healthcare professionals with the PwD (self-report) and/or their carers (proxy report) or from observation. It is suggested that a combination of such tools with user satisfaction questionnaires may provide a way to approach the problem of evaluating Assistive Technology (AT) solutions or inform co-design of technological solutions with PwD and their carers

How a Diverse Research Ecosystem Has Generated New Rehabilitation Technologies: Review of NIDILRR’s Rehabilitation Engineering Research Centers

Over 50 million United States citizens (1 in 6 people in the US) have a developmental, acquired, or degenerative disability. The average US citizen can expect to live 20% of his or her life with a disability. Rehabilitation technologies play a major role in improving the quality of life for people with a disability, yet widespread and highly challenging needs remain. Within the US, a major effort aimed at the creation and evaluation of rehabilitation technology has been the Rehabilitation Engineering Research Centers (RERCs) sponsored by the National Institute on Disability, Independent Living, and Rehabilitation Research. As envisioned at their conception by a panel of the National Academy of Science in 1970, these centers were intended to take a “total approach to rehabilitation”, combining medicine, engineering, and related science, to improve the quality of life of individuals with a disability. Here, we review the scope, achievements, and ongoing projects of an unbiased sample of 19 currently active or recently terminated RERCs. Specifically, for each center, we briefly explain the needs it targets, summarize key historical advances, identify emerging innovations, and consider future directions. Our assessment from this review is that the RERC program indeed involves a multidisciplinary approach, with 36 professional fields involved, although 70% of research and development staff are in engineering fields, 23% in clinical fields, and only 7% in basic science fields; significantly, 11% of the professional staff have a disability related to their research. We observe that the RERC program has substantially diversified the scope of its work since the 1970’s, addressing more types of disabilities using more technologies, and, in particular, often now focusing on information technologies. RERC work also now often views users as integrated into an interdependent society through technologies that both people with and without disabilities co-use (such as the internet, wireless communication, and architecture). In addition, RERC research has evolved to view users as able at improving outcomes through learning, exercise, and plasticity (rather than being static), which can be optimally timed. We provide examples of rehabilitation technology innovation produced by the RERCs that illustrate this increasingly diversifying scope and evolving perspective. We conclude by discussing growth opportunities and possible future directions of the RERC program