Gail Mountain

A European consensus on outcome measures for psychosocial intervention research in dementia care

Psychosocial intervention makes a vital contribution to dementia care. However, the lack of consensus about which outcome measures to use to evaluate effectiveness prevents meaningful comparisons between different studies and interventions. This study used an iterative collaborative, evidence-based approach to identify the best of currently available outcome measures for European psychosocial intervention research. This included consensus workshops, a web-based pan-European consultation and a systematic literature review and a rigorous evaluation against agreed criteria looking at utility across Europe, feasibility and psychometric properties. For people with dementia the measures covered the domains of quality of life, mood, global function, behaviour and daily living skills. Family carer domains included mood and burden, which incorporated coping with behaviour and quality of life. The only specific staff domain identified was morale, but this included satisfaction and coping with behaviour. In conclusion twenty-two measures across nine domains were recommended in order to improve the comparability of intervention studies in Europe. Areas were identified where improved outcome measures for psychosocial intervention research studies are required.

Factors affecting front line staff acceptance of telehealth technologies: a mixed‐method systematic review

AIM To synthesize qualitative and quantitative evidence of front-line staff acceptance of the use of telehealth technologies for the management of Chronic Obstructive Pulmonary Disease and Chronic Heart Failure. BACKGROUND The implementation of telehealth at scale is a governmental priority in countries including the UK, USA and Canada, but little research has been conducted to analyse the impact of implementation on front-line nursing staff. DATA SOURCES Six relevant data bases were searched between 2000-2012. DESIGN Mixed-method systematic review including all study designs. REVIEW METHODS Centre for Reviews and Dissemination approach with thematic analysis and narrative synthesis of results. RESULTS Fourteen studies met the review inclusion criteria; 2 quantitative surveys, 2 mixed-method studies and 10 using qualitative methods, including focus groups, interviews, document analysis and observations. Identified factors affecting staff acceptance centred on the negative impact of service change, staff-patient interaction, credibility and autonomy, and technical issues. Studies often contrasted staff and patient perspectives, and data about staff acceptance were collected as part of a wider study, rather than being the focus of data collection, meaning data about staff acceptance were limited. CONCLUSION If telehealth is to be implemented, studies indicate that the lack of acceptance of this new way of working may be a key barrier. However, recommendations have not moved beyond barrier identification to recognizing solutions that might be implemented by front-line staff. Such solutions are imperative if future roll-out of telehealth technologies is to be successfully achieved.

Technologically-assisted behaviour change: a systematic review of studies of novel technologies for the management of chronic illness

A systematic review was conducted to investigate the use of technology in achieving behaviour change in chronic illness. The areas reviewed were: (1) methods employed to adapt traditional therapy from a face-to-face medium to a computer-assisted platform; (2) targets of behaviour change; and (3) level of human (e.g. therapist) involvement. The initial literature search produced 2032 articles. A total of 45 articles reporting 33 separate interventions met the inclusion/exclusion criteria and were reviewed in detail. The majority of interventions reported a theoretical basis, with many arising from a cognitive-behavioural framework. There was a wide range of therapy content. Therapist involvement was reported in 73% of the interventions. A common problem was high participant attrition, which may have been related to reduced levels of human interaction. Instigating successful behaviour change through technological interventions poses many difficulties. However, there are potential benefits of delivering therapy in this way. For people with long-term health conditions, technological self-management systems could provide a practical method of understanding and monitoring their condition, as well as therapeutic guidance to alter maladaptive behaviour.

Self-management for people with early dementia An exploration of concepts and supporting evidence

This article describes the concept of self-management and how it is being promoted. This is followed by a consideration of why dementia has been largely set aside. Illustrations of how people with early dementia might be enabled to participate are given and the requirements that will help to make this a reality are postulated. These include early disclosure of the diagnosis, support with the consequences of disclosure, a focus upon the needs of the person with dementia, identification of specific interventions that might facilitate self-management, meeting needs for professional education and support and a whole systems approach towards treatment and care. The results of a scoping review of the evidence is given, with an extra factor of meeting needs for lay and patient education being identified in addition to those elements originally postulated. The implications of policy neglect combined with a patchy evidence base and unrecognized service innovations are discussed.

Building research capacity in the allied health professions

This article discusses research capacity building and its relevance for health practitioners using allied health professionals (AHPs) as a case example. Allied health professionals is a term used to represent a diverse group of health workers, each with a discrete clinical focus, whose needs for research capacity building are likely to be similar to one another and to other medical and nursing professionals. The work of AHPs challenges many current research paradigms being complex and multidisciplinary in nature, often delivered in community settings and focusing on holistic outcomes. This article examines some of the current drivers in the healthcare context and highlights tensions for AHPs in developing their research base in basic science and applied health research. The authors argue for a strategic approach to research capacity building and examine the implications of current policy initiatives for AHP roles and activity in research. The importance of a sustained approach to capacity building is underscored.

Smart self management: assistive technology to support people with chronic disease

We have developed a personalised self management system to support self management of chronic conditions with support from health-care professionals. Accelerometers are used to measure gross levels of activity, for example walking around the house, and used to infer higher level activity states, such as standing, sitting and lying. A smart phone containing an accelerometer and a global positioning system (GPS) module can be used to monitor outdoor activity, providing both activity and location based information. Heart rate, blood pressure and weight are recorded and input to the system by the user. A decision support system (DSS) detects abnormal activity and distinguishes life style patterns. The DSS is used to assess the self management process, and automates feedback to the user, consistent with the achievement of their life goals. We have found that telecare and assistive technology is feasible to support self management for chronic conditions within the home and local community environments.

What should be in a self-management programme for people with early dementia?

Objectives: First, to use participative research methods to obtain views from people with dementia and carers about their experiences and the interventions that they consider can assist in facilitating independence and quality of life post diagnosis. Second, to use these views to identify priority topics for a potential self-management programme. Third, to explore the relevance of the identified topics with a consultation group of people with dementia and their carers, thus informing the creation of a draft self-management programme. Method: A series of individual and dyad interviews were conducted with people with dementia and family carers to explore their experiences post diagnosis and obtain views of how quality life can be maintained while living with dementia. A further group of people with dementia and carers then met over six successive weeks to explore and provide feedback on the topic areas generated out of the initial interviews and add to the content. Results: Data generated from the individual interviews identified a number of themes for a potential self-management group which were then validated through consultation. Optimum modes of delivery of a self-management programme were also indicated. Conclusions: A draft programme has been constructed building upon the framework of identified priorities. The process and outputs from the consultation also indicated the significant ramifications of such a programme for services.

Developing and testing a telerehabilitation system for people following stroke: issues of usability

This paper describes user testing of a technological system which enables stroke survivors to independently undertake rehabilitation exercises at home. The prototype is based on advanced movement sensors which are worn by the user when performing prescribed exercises. Sensor data are transmitted to a computer which displays the users movements and progress. The number and type of sensors, methods of attaching them to the users body in the correct locations, the type of computer screen and the input devices were changed and refined as the project progressed in response to feedback from people with stroke, their carers and physiotherapists. Home-based testing of the system highlighted usability issues concerned with the appropriateness and acceptability of the equipment in domestic settings, the sensors and methods of attachment, and use of, and interpretation of the screen presentation. Users required education as well as support throughout the testing period. Increasing sophistication of the technological aspects of the system over time resolved some usability issues but also created others, as did meeting the aims of improved clinical utility. The interplay between technology development, clinical utility and usability must be taken into account for devices to be successfully developed for practice.

SMART project: Application of emerging information and communication technology to home-based rehabilitation for stroke patients

The SMART project, entitled ‘SMART rehabilitation: technological applications for use in the home with stroke patients’, is funded under the EQUAL (extend quality of life) initiative of the UK Engineering and Physical Sciences Research Council (EPSRC). The project aims to examine the scope, effectiveness and appropriateness of systems to support home-based rehabilitation for older people and their carers. In this paper, we describe the design and development of a low-cost home-based rehabilitation system. Through the project we have involved end users in the design process and this model can be applied to the design of other healthcare related systems.

Design, development and deployment of a hand/wrist exoskeleton for home-based rehabilitation after stroke - SCRIPT project

Objective: this manuscript introduces the Supervised Care and Rehabilitation Involving Personal Tele-robotics (SCRIPT) project. The main goal is to demonstrate design and development steps involved in a complex intervention, while examining feasibility of using an instrumented orthotic device for home-based rehabilitation after stroke. Methods: the project uses a user-centred design methodology to develop a hand/wrist rehabilitation device for home-based therapy after stroke. The patient benefits from a dedicated user interface that allows them to receive feedback on exercise as well as communicating with the health-care professional. The health-care professional is able to use a dedicated interface to send/receive communications and remote-manage patients exercise routine using provided performance benchmarks. Patients were involved in a feasibility study (n=23) and were instructed to use the device and its interactive games for 180 min per week, around 30 min per day, for a period of 6 weeks, with a 2-months follow up. At the time of this study, only 12 of these patients have finished their 6 weeks trial plus 2 months follow up evaluation. Results: with the “use feasibility” as objective, our results indicate 2 patients dropping out due to technical difficulty or lack of personal interests to continue. Our frequency of use results indicate that on average, patients used the SCRIPT1 device around 14 min of self-administered therapy a day. The group average for the system usability scale was around 69% supporting system usability. Conclusions: based on the preliminary results, it is evident that stroke patients were able to use the system in their homes. An average of 14 min a day engagement mediated via three interactive games is promising, given the chronic stage of stroke. During the 2nd year of the project, 6 additional games with more functional relevance in their interaction have been designed to allow for a more variant context for interaction with the system, thus hoping to positively influence the exercise duration. The system usability was tested and provided supporting evidence for this parameter. Additional improvements to the system are planned based on formative feedback throughout the project and during the evaluations. These include a new orthosis that allows a more active control of the amount of assistance and resistance provided, thus aiming to provide a more challenging interaction.