Community Occupational Therapy for people with dementia and family carers (COTiD-UK) versus treatment as usual (Valuing Active Life in Dementia [VALID]) study: A single-blind, randomised controlled trial.

BACKGROUND: We aimed to estimate the clinical effectiveness of Community Occupational Therapy for people with dementia and family carers-UK version (Community Occupational Therapy in Dementia-UK version [COTiD-UK]) relative to treatment as usual (TAU). We hypothesised that COTiD-UK would improve the ability of people with dementia to perform activities of daily living (ADL), and family carers' sense of competence, compared with TAU. METHODS AND FINDINGS: The study design was a multicentre, 2-arm, parallel-group, assessor-masked, individually randomised controlled trial (RCT) with internal pilot. It was conducted in 15 sites across England from September 2014 to January 2018. People with a diagnosis of mild to moderate dementia living in their own home were recruited in pairs with a family carer who provided domestic or personal support for at least 4 hours per week. Pairs were randomised to either receive COTiD-UK, which comprised 10 hours of occupational therapy delivered over 10 weeks in the person with dementia's home or TAU, which comprised the usual local service provision that may or may not include standard occupational therapy. The primary outcome was the Bristol Activities of Daily Living Scale (BADLS) score at 26 weeks. Secondary outcomes for the person with dementia included the following: the BADLS scores at 52 and 78 weeks, cognition, quality of life, and mood; and for the family carer: sense of competence and mood; plus the number of social contacts and leisure activities for both partners. Participants were analysed by treatment allocated. A total of 468 pairs were recruited: people with dementia ranged from 55 to 97 years with a mean age of 78.6 and family carers ranged from 29 to 94 with a mean of 69.1 years. Of the people with dementia, 74.8% were married and 19.2% lived alone. Of the family carers, 72.6% were spouses, and 22.2% were adult children. On randomisation, 249 pairs were assigned to COTiD-UK (62% people with dementia and 23% carers were male) and 219 to TAU (52% people with dementia and 32% carers were male). At the 26 weeks follow-up, data were available for 364 pairs (77.8%). The BADLS score at 26 weeks did not differ significantly between groups (adjusted mean difference estimate 0.35, 95% CI -0.81 to 1.51; p = 0.55). Secondary outcomes did not differ between the groups. In total, 91% of the activity-based goals set by the pairs taking part in the COTiD-UK intervention were fully or partially achieved by the final COTiD-UK session. Study limitations include the following: Intervention fidelity was moderate but varied across and within sites, and the reliance on primarily proxy data focused on measuring the level of functional or cognitive impairment which may not truly reflect the actual performance and views of the person living with dementia. CONCLUSIONS: Providing community occupational therapy as delivered in this study did not improve ADL performance, cognition, quality of life, or mood in people with dementia nor sense of competence or mood in family carers. Future research should consider measuring person-centred outcomes that are more meaningful and closely aligned to participants' priorities, such as goal achievement or the quantity and quality of activity engagement and participation. TRIAL REGISTRATION: Current Controlled Trials ISRCTN10748953.

Estimating the minimum important difference in the DEMQOL instrument in people with dementia.

PURPOSE: The Dementia-Related Quality of Life (DEMQOL) measure and the DEMQOL-Utility Score (DEMQOL-U) are validated tools for measuring quality of life (QOL) in people with dementia. What score changes translate to a clinically significant impact on patients' lives was unknown. This study establishes the minimal important differences (MID) for these two instruments. METHODS: Anchor-based and distribution-based methods were used to estimate the MID scores from patients enrolled in a randomised controlled trial. For the anchor-based method, the global QOL (Q29) item from the DEMQOL was chosen as the anchor for DEMQOL and both Q29 and EQ-5D for DEMQOL-U. A one category difference in Q29, and a 0.07 point difference in EQ-5D score, were used to classify improvement and deterioration, and the MID scores were calculated for each category. These results were compared with scores obtained by the distribution-based methods. RESULTS: A total of 490 people with dementia had baseline DEMQOL data, of these 386 had 8-month data, and 344 had 12-month DEMQOL data. The absolute change in DEMQOL for a combined 1-point increase or decrease in the Q29 anchor was 5.2 at 8 months and 6.0 at 12 months. For the DEMQOL-U, the average absolute change at 8 and 12 months was 0.032 and 0.046 for the Q29 anchor and 0.020 and 0.024 for EQ-5D anchor. CONCLUSION: We present MID scores for the DEMQOL and DEMQOL-U instruments obtained from a large cohort of patients with dementia. An anchored-based estimate of the MID for the DEMQOL is around 5 to 6 points; and 0.02 to 0.05 points for the DEMQOL-U. The results of this study can guide clinicians and researchers in the interpretation of these instruments comparisons between groups or within groups of people with dementia. TRIAL REGISTRATION NUMBER AND DATE OF REGISTRATION: ISRCTN17993825 on 11th October 2016.

Feasibility and acceptability evaluation of the Promoting Independence in Dementia (PRIDE) intervention for living well with dementia.

OBJECTIVES: Post-diagnostic psychosocial interventions could play an important role in supporting people with mild dementia remain independent. The Promoting Independence in Dementia (PRIDE) intervention was developed to address this. METHOD: The mixed methods non-randomized, pre-post feasibility study occurred across England. Facilitators were recruited from the voluntary sector and memory services. Participants and their supporters took part in the three-session intervention. Outcome measures were collected at baseline and follow-up. To evaluate acceptability, focus groups and interviews were conducted with a subsample of participants and facilitators. RESULTS: Contextual challenges to delivery including national research governance changes, affected recruitment of study sites. Thirty-four dyads consented, with 14 facilitators providing the intervention. Dyads took part in at least two sessions (79%), and 73% in all three. Outcome measures were completed by 79% without difficulty, with minimal missing data. No significant changes were found on pre and post assessments. Post hoc analysis found moderate effect size improvements for self-management (SMAS instrument) in people with dementia (d = 0.41) and quality of life (EQ5D measure) in carers (d = 0.40). Qualitative data indicated that dyads found PRIDE acceptable, as did intervention facilitators. CONCLUSIONS: The three-session intervention was well accepted by participant-dyads and intervention facilitators. A randomized controlled trial of PRIDE would need to carefully consider recruitment potential across geographically varied settings and site stratification according to knowledge of contextual factors, such as the diversity of post-diagnostic services across the country. Letting sites themselves be responsible for identifying suitable intervention facilitators was successful. The self-report measures showed potential to be included in the main trial.

Hearing and vision care provided to older people residing in care homes: a cross-sectional survey of care home staff.

BACKGROUND: Hearing and vision loss in older people has been proven to affect physical and mental health and increase the speed of cognitive decline. Studies have demonstrated that certain practices and improved staff knowledge increase the effective care of residents' ears and eyes, yet it is not known which practices are being implemented in care homes. This study aimed to identify the gaps in staff knowledge regarding hearing and vision difficulties in older residents, and which practices known to improve ear and eye care in older care home residents are not commonly implemented in care homes in England. METHODS: This study used a cross-sectional survey design. Survey questions were informed by the existing literature and were focused on practices, staff knowledge, and other aspects that have shown to affect residents' hearing and vision care. A convenience sample of care home staff were recruited from care homes across England between November 2018 and February 2019 via email and in paper format. Descriptive statistics and Chi-Square analysis were applied to identify the factors influencing the care being provided to care home residents. RESULTS: A total of 400 care home staff responded from 74 care homes. The results revealed that less than half of staff respondents reported to use screening tools to identify hearing (46%) and vision impairments (43.8%); that care homes rarely have access to other assistive devices for hearing (16%) and vision loss (23.8%), and that audiology services do not regularly assess care home residents (46.8%). A majority of staff who responded were not confident in ear and eye care. Responses were found to be influenced by the respondents' job role, length of time working in care homes and also the care home type. Findings confirmed a lack of standardised practice and the importance of shared communication for promulgation of best practice. CONCLUSION: This study has identified that some practices known to facilitate ear and eye care are not commonly applied in a sample of English care homes. It has also shown that care home staff knowledge of ear and eye care is inconsistent. The information derived from this survey can be used to inform guidelines for best practice and inform needs for future research.

Assessing fidelity of a community based psychosocial intervention for people with mild dementia within a large randomised controlled trial.

BACKGROUND: Understanding intervention delivery as intended, particularly in complex interventions, should be underpinned by good quality fidelity assessment. We present the findings from a fidelity assessment embedded as part of a trial of a complex community-based psychosocial intervention, Journeying through Dementia (JtD). The intervention was designed to equip individuals with the knowledge and skills to successfully self-manage, maintain independence, and live well with dementia and involves both group and individual sessions. The methodological challenges of developing a conceptual framework for fidelity assessment and creating and applying purposely designed measures derived from this framework are discussed to inform future studies. METHODS: A conceptual fidelity framework was created out of core components of the intervention (including the intervention manual and training for delivery), associated trial protocols and pre-defined fidelity standards and criteria against which intervention delivery and receipt could be measured. Fidelity data collection tools were designed and piloted for reliability and usability. Data collection in four selected sites (fidelity sites) was via non-participatory observations of the group aspect of the intervention, attendance registers and interventionist (facilitator and supervisor) self-report. RESULTS: Interventionists from all four fidelity sites attended intervention training. The majority of group participants at the four sites (71%) received the therapeutic dose of 10 out of 16 sessions. Weekly group meeting attendance (including at 'out of venue' sessions) was excellent at 80%. Additionally, all but one individual session was attended by the participants who completed the intervention. It proved feasible to create tools derived from the fidelity framework to assess in-venue group aspects of this complex intervention. Results of fidelity assessment of the observed groups were good with substantial inter-rater reliability between researchers KAPPA 0.68 95% CI (0.58-0.78). Self-report by interventionists concurred with researcher assessments. CONCLUSIONS: There was good fidelity to training and delivery of the group aspect of the intervention at four sites. However, the methodological challenges of assessing all aspects of this complex intervention could not be overcome due to practicalities, assessment methods and ethical considerations. Questions remain regarding how we can assess fidelity in community-based complex interventions without impacting upon intervention or trial delivery. TRIAL REGISTRATION: ISRCTN17993825 .

Exploring factors that affect the uptake and sustainability of videoconferencing for healthcare provision for older adults in care homes: a realist evaluation.

BACKGROUND: Videoconferencing has been proposed as a way of improving access to healthcare for older adults in care homes. Despite this, effective uptake of videoconferencing remains varied. This study evaluates a videoconferencing service for care home staff seeking support from healthcare professionals for the care of residents. The aim was to explore factors affecting the uptake and sustainability of videoconferencing in care homes, to establish what works for whom, in which circumstances and respects. The findings informed recommendations for commissioners and strategic managers on how best to implement videoconferencing for remote healthcare provision in care homes for older adults. METHODS: Realist evaluation was used to develop, refine and test theories around the uptake and maintenance of videoconferencing in three care homes across Yorkshire and the Humber, England. The care homes were selected using maximum variation sampling regarding the extent to which they used videoconferencing. A developmental inquiry framework and realist interviews were used to identify Context, Mechanism and Outcome Configurations (CMOCs) regarding uptake and sustainability of the service. Participants included care home residents (aged > 65) and staff, relatives and strategic managers of care home chains. The interviews were an iterative process conducted alongside data analysis. Transcripts of audio recordings were entered into NVIVO 12, initially coded into themes, then hypotheses developed, refined and tested. RESULTS: Outcomes were generated in relation to two main contextual factors, these were: (1) communication culture in the home and (2) the prior knowledge and experience that staff have of videoconferencing. The key facilitators identified were aspects of leadership, social links within the home and psychological safety which promoted shared learning and confidence in using the technology. CONCLUSIONS: Videoconferencing is a valuable tool, but successful implementation and sustainability are dependent on care home culture and staff training to promote confidence through positive and supported experiences.

Measuring the well-being of people with dementia: a conceptual scoping review.

BACKGROUND: Enabling people with dementia to 'live well' is a policy and research priority in many countries. However, instruments for measuring outcomes of psychosocial interventions designed to promote well-being in dementia are often derived from a symptom-focused, loss/deficit approach, or from broad quality of life concepts. A pan-European dementia working group called for research on the development of an alternative asset/strengths-based conceptual framework of well-being in dementia. This paper takes forward this recommendation by developing such a framework and using this to map relevant self-report outcome measures. METHODS: Three scoping reviews of published studies were conducted iteratively. First, we examined the literature on lived experiences of well-being and quality of life in people with dementia and then the wider dementia literature for application of well-being constructs. The synthesised findings generated conceptual domains of well-being in people with dementia. Corresponding self-report instruments used in dementia research were scoped, categorised within the conceptual framework and their potential value in measuring outcomes for people with dementia was examined. FINDINGS: Six conceptual domains for the measurement of well-being and 35 self-report instruments that have been used with people with dementia were identified. Six instruments were developed specifically for people with dementia, five were derived from the gerontological literature and 24 from the well-being literature. Fifteen instruments and one sub-scale have been examined for psychometric properties amongst people with dementia. To date, 20 have been used as outcome measures, with seven measuring change over time. A number of identified instruments utilise traditional retrospective Likert-scaling response formats, limiting their potential for use with some groups of people with dementia. CONCLUSION: An assets/strengths-based framework is presented, outlining structural domains for selecting self-report measures of well-being in people with dementia. It provides a foundation for enhancing research into processes and outcomes of psychosocial interventions, including instrument development, more precise matching of intervention aims with outcome measurement, and newer technology-based 'in-the-moment' measurement.

Psychosocial Interventions for Community-Dwelling People Following Diagnosis of Mild to Moderate Dementia: Findings of a Systematic Scoping Review.

National policies and evidence reviews recommend psychosocial interventions (PIs) as an essential support, particularly in the period following dementia diagnosis. However, availability and uptake of these interventions are comparatively low. One of the reasons for this is that clinicians lack information about what might be provided and the potential benefits of different interventions. This article identifies and describes PIs for community-dwelling people following diagnosis of mild to moderate dementia and presents the available evidence to inform practice decisions. A systematic scoping review was employed to map the evidence relating to PIs for this group. This identified 63 relevant studies, testing 69 interventions, which could be grouped into 6 intervention categories: 20 cognition-oriented, 11 behavior-oriented, 11 stimulation-oriented, 13 emotion-oriented, 5 social-oriented, and 9 multimodal. There were three targets for outcome measurement of these PIs: the person with dementia, the family caregiver, and the person-caregiver dyad. Over 154 outcome measures were identified in the studies, with outcomes measured across 11 main domains. The lack of a classification framework for PIs means it is difficult to create a meaningful synthesis of the breadth of relevant evidence to guide clinical practice. Possible dimensions of a classification framework are proposed to begin to address this gap.

Measuring fidelity of delivery of the Community Occupational Therapy in Dementia-UK intervention.

BACKGROUND: Interpreting data about intervention effectiveness requires an understanding of which intervention components were delivered and whether they were delivered as planned (fidelity of delivery). These studies aimed to develop a reliable measure for assessing fidelity of delivery of the Community Occupational Therapy in Dementia-UK intervention (COTiD-UK) (Study 1) and measure fidelity of delivery of COTiD-UK across sessions, sites and occupational therapists (Study 2). METHODS: The studies used a longitudinal observational design nested within a multi-site randomised controlled trial. Where practicable, all intervention sessions were audio-recorded. Fidelity checklists and coding guidelines were developed, piloted and refined until good agreement was achieved between two coders. Ten percent of sessions were purposively sampled from 12 sites and 31 occupational therapists. Transcripts were coded using checklists developed in Study 1; 10% of sets of intervention session transcripts were double coded to ensure that agreement was maintained. Percentages of components that were delivered were calculated for each session, site and occupational therapist. RESULTS: A reliable measure of fidelity of delivery for COTiD-UK was developed after several rounds of piloting and amendments. COTiD-UK was delivered with moderate fidelity across all six sessions (range: 52.4-75.5%). The mean range of fidelity varied across sites (26.7-91.2%) and occupational therapists (26.7-94.1%). CONCLUSIONS: A reliable, systematic method for measuring fidelity of delivery of COTiD-UK was developed and applied, and can be adapted for use in similar interventions. As COTiD-UK was delivered with moderate fidelity, there is a reasonable degree of confidence that intervention effects were attributable to COTiD-UK.

Evaluation of a Companion Robot for Individuals With Dementia: Quantitative Findings of the MARIO Project in an Irish Residential Care Setting.

The current study focuses on the short-term effect of MARIO, a social robot, on quality of life, depression, and perceived social support in persons with dementia (PWD) and evaluates their acceptability of MARIO. Ten PWD in one nursing home took part in a 4-week pilot study, where each participant had up to 12 sessions with MARIO. Sessions comprised engagement in music, news, reminiscence, games, and calendar applications. Standardized questionnaires were administered before and after the 4-week period. Participants had a sustained interest in MARIO during their interactions and an acceptance of MARIO's appearance, sound, and applications. Consequently, participants spent more time socially engaged. No statistically significant differences were found in quality of life, depression, and perceived social support. PWD can engage with a social robot in a real-world nursing home. Future research should incorporate a larger sample and longer intervention period. [Journal of Gerontological Nursing, 45(7), 36-45.].

Towards capturing meaningful outcomes for people with dementia in psychosocial intervention research: A pan-European consultation.

BACKGROUND: People with dementia are often marginalized and excluded from influence, also in relation to dementia research. There is, however, a growing requirement for inclusion through Patient and Public Involvement (PPI), but there is still limited knowledge on how researchers can fully benefit from the involvement of people with dementia in the development and testing of psychosocial interventions. This paper describes the results of a pan-European consultation with people with dementia, synthesizing their views on outcomes of psychosocial interventions. OBJECTIVE: To involve people with dementia in establishing what are meaningful outcomes when participating in psychosocial interventions. SETTING AND PARTICIPANTS: Consultations took place at four divergent sites across Europe, involving twenty-five people with dementia from nine European countries. METHODS: The methods used for the consultation were developed through an iterative process involving people with dementia. Data from the consultation were analysed from a thematic analysis approach. RESULTS: The results suggested that people with dementia wish to participate in interventions that enhance their well-being, confidence, health, social participation and human rights. This highlights a need for improvements in psychosocial research to capture these outcomes. DISCUSSION AND CONCLUSIONS: Involving people with dementia in discussions of psychosocial interventions has enhanced our understanding about meaningful outcome measures in research and methods of data collection. This study suggests that new outcome measures in psychosocial research are needed where concepts of positive psychology and social health can guide innovation and outcome measurement.

Alzheimer Europe's position on involving people with dementia in research through PPI (patient and public involvement).

This paper reflects Alzheimer Europe's position on PPI (patient and public involvement) in the context of dementia research and highlights some of the challenges and potential risks and benefits associated with such meaningful involvement. The paper was drafted by Alzheimer Europe in collaboration with members of INTERDEM and the European Working Group of People with Dementia. It has been formally adopted by the Board of Alzheimer Europe and endorsed by the Board of INTERDEM and by the JPND working group 'Dementia Outcome Measures - Charting New Territory'. Alzheimer Europe is keen to promote the involvement of people with dementia in research, not only as participants but also in the context of PPI, by generating ideas for research, advising researchers, being involved in consultations and being directly involved in research activities. This position paper is in keeping with this objective. Topics covered include, amongst others, planning involvement, establishing roles and responsibilities, training and support, managing information and input from PPI, recognising the contribution of people with dementia involved in research in this way, promoting and protecting the rights and well-being of people with dementia, training and support, and promoting an inclusive approach and the necessary infrastructure for PPI in dementia research.

A preventative lifestyle intervention for older adults (lifestyle matters): a randomised controlled trial.

Objectives: to test whether an occupation-based lifestyle intervention can sustain and improve the mental well-being of adults aged 65 years or over compared to usual care, using an individually randomised controlled trial. Participants: 288 independently living adults aged 65 years or over, with normal cognition, were recruited from two UK sites between December 2011 and November 2015. Interventions: lifestyle Matters is a National Institute for Health and Care Excellence recommended multi-component preventive intervention designed to improve the mental well-being of community living older people at risk of decline. It involves weekly group sessions over 4 months and one to one sessions. Main outcome measures: the primary outcome was mental well-being at 6 months (mental health (MH) dimension of the SF-36). Secondary outcomes included physical health dimensions of the SF-36, extent of depression (PHQ-9), quality of life (EQ-5D) and loneliness (de Jong Gierveld Loneliness Scale), assessed at 6 and 24 months. Results: data on 262 (intervention = 136; usual care = 126) participants were analysed using intention to treat analysis. Mean SF-36 MH scores at 6 months differed by 2.3 points (95 CI: -1.3 to 5.9; P = 0.209) after adjustments. Conclusions: analysis shows little evidence of clinical or cost-effectiveness in the recruited population with analysis of the primary outcome revealing that the study participants were mentally well at baseline. The results pose questions regarding how preventive interventions to promote well-being in older adults can be effectively targeted in the absence of proactive mechanisms to identify those who at risk of decline. Trial Registration: ISRCTN67209155.

Dementia Care Mapping in long-term care settings: a systematic review of the evidence.

BACKGROUND: This systematic review identifies and reports the extent and nature of evidence to support the use of Dementia Care Mapping as an intervention in care settings. METHODS: The review was limited to studies that used Dementia Care Mapping as an intervention and included outcomes involving either care workers and/or people living with dementia. Searches were conducted in PubMed, Web of Knowledge, CINAHL, PsychINFO, EBSCO, and Scopus and manually from identified articles reference lists. Studies published up to January 2017 were included. Initial screening of identified papers was based on abstracts read by one author; full-text papers were further evaluated by a second author. The quality of the identified papers was assessed independently by two authors using the Cochrane Risk of Bias Tool. A narrative synthesis of quantitative findings was conducted. RESULTS: We identified six papers fulfilling predefined criteria. Studies consist of recent, large scale, good quality trials that had some positive impacts upon care workers' stress and burnout and benefit people with dementia in terms of agitated behaviors, neuropsychiatric symptoms, falls, and quality of life. CONCLUSION: Available research provides preliminary evidence that Dementia Care Mapping may benefit care workers and people living with dementia in care settings. Future research should build on the successful studies to date and use other outcomes to better understand the benefits of this intervention.

Comparison of patient perceptions of Telehealth-supported and specialist nursing interventions for early stage COPD: a qualitative study.

BACKGROUND: The increasing prevalence and associated cost of treating Chronic Obstructive Pulmonary Disease (COPD) is unsustainable, and focus is needed on self-management and prevention of hospital admissions. Telehealth monitoring of patients' vital signs allows clinicians to prioritise their workload and enables patients to take more responsibility for their health. This paper reports the results of a qualitative study embedded within a feasibility and pilot Randomised Controlled Trial (RCT) of Telehealth-supported care within a community-based COPD supported-discharge service. The aim of the study was to qualitatively explore the experiences of patients with COPD who had received either a Telehealth-supported or a specialist nursing intervention following their discharge from hospital after an admission for a COPD exacerbation. METHODS: Patients were invited to either participate in semi-structured interviews or to complete a semi-structured self-administered questionnaire on completion of the intervention. Nine patients were interviewed (67 % female) and seventeen patients completed the questionnaires. In addition, three clinicians responsible for the delivery of both interventions were interviewed to obtain their perspectives on the new services. RESULTS: Seven underlying themes emerged from the patient interviews and were further explored in the questionnaires: (1) patient demographics; (2) information received by the participants; (3) installation of the Telehealth technology; (4) Telehealth service functionality; (5) visits; (6) service withdrawal; and (7) service perceptions. Recipients of both services reported feelings of safety derived from the delivery of an integrated, community-based service. CONCLUSIONS: Although recipients of the Telehealth service received 50 % fewer home visits from the clinicians than recipients of a more traditional community-based nursing intervention, the patients were enthusiastic about the service, with some describing it as the best service they had ever received. This suggests that a Telehealth intervention is an acceptable alternative to a more traditional home nursing visit model for monitoring community-based patients with COPD following their discharge from hospital. TRIAL REGISTRATION: Current Controlled Trials ISRCTN68856013.

Implementing solutions to improve and expand telehealth adoption: participatory action research in four community healthcare settings.

BACKGROUND: Adoption of telehealth has been slower than anticipated, and little is known about the service improvements that help to embed telehealth into routine practice or the role of frontline staff in improving adoption. This paper reports on participatory action research carried out in four community health settings using telehealth for patients with Chronic Obstructive Pulmonary Disease and Chronic Heart Failure. METHODS: To inform the action research, in-depth case studies of each telehealth service were conducted (May 2012-June 2013). Each service was then supported by researchers through two cycles of action research to implement changes to increase adoption of telehealth, completed over a seven month period (July 2013-April 2014). The action research was studied via observation of multi-stakeholder workshops, analysis of implementation plans, and focus groups. RESULTS: Action research participants included 57 staff and one patient, with between eight and 20 participants per site. The case study findings were identified as a key source of information for planning change, with sites addressing common challenges identified through this work. For example, refining referral criteria; standardizing how and when patients are monitored; improving data sharing; and establishing evaluation processes. Sites also focused on raising awareness of telehealth to increase adoption in other clinical teams and to help secure future financial investment for telehealth, which was required because of short-term funding arrangements. Specific solutions varied due to local infrastructures, resources, and opinion, as well as previous service developments. Local telehealth champions played an important role in engaging multiple stakeholders in the study. CONCLUSIONS: Action research enabled services to make planned changes to telehealth and share learning across multiple stakeholders about how and when to use telehealth. However, adoption was impeded by continual changes affecting telehealth and wider service provision, which also hindered implementation efforts and affected motivation of staff to engage with the action research, particularly where local decision-makers were not engaged in the study. Wider technological barriers also limited the potential for change, as did uncertainties about goals for telehealth investment, thereby making it difficult to identify outcomes for demonstrating the added value over existing practice.

Feasibility study into self-administered training at home using an arm and hand device with motivational gaming environment in chronic stroke.

BACKGROUND: Assistive and robotic training devices are increasingly used for rehabilitation of the hemiparetic arm after stroke, although applications for the wrist and hand are trailing behind. Furthermore, applying a training device in domestic settings may enable an increased training dose of functional arm and hand training. The objective of this study was to assess the feasibility and potential clinical changes associated with a technology-supported arm and hand training system at home for patients with chronic stroke. METHODS: A dynamic wrist and hand orthosis was combined with a remotely monitored user interface with motivational gaming environment for self-administered training at home. Twenty-four chronic stroke patients with impaired arm/hand function were recruited to use the training system at home for six weeks. Evaluation of feasibility involved training duration, usability and motivation. Clinical outcomes on arm/hand function, activity and participation were assessed before and after six weeks of training and at two-month follow-up. RESULTS: Mean System Usability Scale score was 69 % (SD 17 %), mean Intrinsic Motivation Inventory score was 5.2 (SD 0.9) points, and mean training duration per week was 105 (SD 66) minutes. Median Fugl-Meyer score improved from 37 (IQR 30) pre-training to 41 (IQR 32) post-training and was sustained at two-month follow-up (40 (IQR 32)). The Stroke Impact Scale improved from 56.3 (SD 13.2) pre-training to 60.0 (SD 13.9) post-training, with a trend at follow-up (59.8 (SD 15.2)). No significant improvements were found on the Action Research Arm Test and Motor Activity Log. CONCLUSIONS: Remotely monitored post-stroke training at home applying gaming exercises while physically supporting the wrist and hand showed to be feasible: participants were able and motivated to use the training system independently at home. Usability shows potential, although several usability issues need further attention. Upper extremity function and quality of life improved after training, although dexterity did not. These findings indicate that home-based arm and hand training with physical support from a dynamic orthosis is a feasible tool to enable self-administered practice at home. Such an approach enables practice without dependence on therapist availability, allowing an increase in training dose with respect to treatment in supervised settings. TRIAL REGISTRATION: This study has been registered at the Netherlands Trial Registry (NTR): NTR3669 .

Examining the use of telehealth in community nursing: identifying the factors affecting frontline staff acceptance and telehealth adoption.

AIMS: To examine frontline staff acceptance of telehealth and identify barriers to and enablers of successful adoption of remote monitoring for patients with Chronic Obstructive Pulmonary Disease and Chronic Heart Failure. BACKGROUND: The use of telehealth in the UK has not developed at the pace and scale anticipated by policy. Many existing studies report frontline staff acceptance as a key barrier, however data are limited and there is little evidence of the adoption of telehealth in routine practice. DESIGN: Case studies of four community health services in England that use telehealth to monitor patients with Chronic Obstructive Pulmonary Disease and Chronic Heart Failure. METHODS: Thematic analysis of qualitative interviews with 84 nursing and other frontline staff; and 21 managers and key stakeholders; data collected May 2012-June 2013. FINDINGS: Staff attitudes ranged from resistance to enthusiasm, with varied opinions about the motives for investing in telehealth and the potential impact on nursing roles. Having reliable and flexible technology and dedicated resources for telehealth work were identified as essential in helping to overcome early barriers to acceptance, along with appropriate staff training and a partnership approach to implementation. Early successes were also important, encouraging staff to use telehealth and facilitating clinical learning and increased adoption. CONCLUSIONS: The mainstreaming of telehealth hinges on clinical 'buy-in'. Where barriers to successful implementation exist, clinicians can lose faith in using technology to perform tasks traditionally delivered in person. Addressing barriers is therefore crucial if clinicians are to adopt telehealth into routine practice.

Stroke patients' utilisation of extrinsic feedback from computer-based technology in the home: a multiple case study realistic evaluation.

BACKGROUND: Evidence indicates that post-stroke rehabilitation improves function, independence and quality of life. A key aspect of rehabilitation is the provision of appropriate information and feedback to the learner.Advances in information and communications technology (ICT) have allowed for the development of various systems to complement stroke rehabilitation that could be used in the home setting. These systems may increase the provision of rehabilitation a stroke survivor receives and carries out, as well as providing a learning platform that facilitates long-term self-managed rehabilitation and behaviour change. This paper describes the application of an innovative evaluative methodology to explore the utilisation of feedback for post-stroke upper-limb rehabilitation in the home. METHODS: Using the principles of realistic evaluation, this study aimed to test and refine intervention theories by exploring the complex interactions of contexts, mechanisms and outcomes that arise from technology deployment in the home. Methods included focus groups followed by multi-method case studies (n = 5) before, during and after the use of computer-based equipment. Data were analysed in relation to the context-mechanism-outcome hypotheses case by case. This was followed by a synthesis of the findings to answer the question, 'what works for whom and in what circumstances and respects?' RESULTS: Data analysis reveals that to achieve desired outcomes through the use of ICT, key elements of computer feedback, such as accuracy, measurability, rewarding feedback, adaptability, and knowledge of results feedback, are required to trigger the theory-driven mechanisms underpinning the intervention. In addition, the pre-existing context and the personal and environmental contexts, such as previous experience of service delivery, personal goals, trust in the technology, and social circumstances may also enable or constrain the underpinning theory-driven mechanisms. CONCLUSIONS: Findings suggest that the theory-driven mechanisms underpinning the utilisation of feedback from computer-based technology for home-based upper-limb post-stroke rehabilitation are dependent on key elements of computer feedback and the personal and environmental context. The identification of these elements may therefore inform the development of technology; therapy education and the subsequent adoption of technology and a self-management paradigm; long-term self-managed rehabilitation; and importantly, improvements in the physical and psychosocial aspects of recovery.

The SMART personalised self-management system for congestive heart failure: results of a realist evaluation.

BACKGROUND: Technology has the potential to provide support for self-management to people with congestive heart failure (CHF). This paper describes the results of a realist evaluation of the SMART Personalised Self-Management System (PSMS) for CHF. METHODS: The PSMS was used, at home, by seven people with CHF. Data describing system usage and usability as well as questionnaire and interview data were evaluated in terms of the context, mechanism and outcome hypotheses (CMOs) integral to realist evaluation. RESULTS: The CHF PSMS improved heart failure related knowledge in those with low levels of knowledge at baseline, through providing information and quizzes. Furthermore, participants perceived the self-regulatory aspects of the CHF PSMS as being useful in encouraging daily walking. The CMOs were revised to describe the context of use, and how this influences both the mechanisms and the outcomes. CONCLUSIONS: Participants with CHF engaged with the PSMS despite some technological problems. Some positive effects on knowledge were observed as well as the potential to assist with changing physical activity behaviour. Knowledge of CHF and physical activity behaviour change are important self-management targets for CHF, and this study provides evidence to direct the further development of a technology to support these targets.