What are the views of adults with an intellectual disability (AWID), carers and healthcare professionals on a community falls management programme for AWID: a qualitative interview study in the UK.

OBJECTIVES: The aim of this study was to refine a draft of the ACTiON FALLS LD programme based on the views of adults with an intellectual disability (AWID), carers and healthcare professionals (HCPs). DESIGN, SETTING AND PARTICIPANTS: The semistructured interview study included HCP as well as AWID and carers supporting AWID living in the community. Community settings included sheltered living, supported living, AWID living at home with family carers or independently. The interview study explored the first draft of the ACTiON FALLS LD programme as well as the wider falls management for AWID. Interviews with AWID were developed to include a range of approaches (eg, case studies, pictures) to support inclusive participation. Individual interviews were digitally recorded and transcribed. Researcher notes were used during interviews with AWID. All data were analysed using the principles of framework analysis. RESULTS: 14 HCP, 8 carers and 13 AWID took part in the interview process. Five key themes were identified: programme components, programme design, programme approach, who would use the programme and programme delivery. CONCLUSIONS: The views of AWID, HCP and carers showed the need to consider the impact of risk perception, anxiety and fear of falling in the adaption of the ACTiON FALLS programme. The programme needs to be accessible and support the inclusion of AWID in managing falls and ultimately fulfil the requirement for a proactive and educational tool by all.

Giving permission to care for people with dementia in residential homes: learning from a realist synthesis of hearing-related communication.

BACKGROUND: Managing hearing communication for residents living with hearing loss and dementia in long-term care settings is challenging. This paper explores how care can be effective in optimising hearing communication for residents living with dementia. We argue that the underlying notion of permission or authorisation allows care staff to do what they know will be effective in providing person-centred care that enhances hearing communication. The paper also indicates that this notion of permission can usefully be applied to other areas of care home practice. METHODS: To address hearing-related communication in care homes, we conducted a realist synthesis (RS). As a theory-driven approach to reviewing literature, it also uses expert opinion to understand complex health situations. Using RS, we developed a theory surrounding the management of hearing-related communication in care homes. Applying formal processes to the literature search and data extraction, the analysis uncovered relevant mechanisms and contexts to help confirm, refute or refine our understanding of how hearing communication could be improved. RESULTS: Forty-three papers were selected for the realist synthesis. The documents were analysed to construct five context-mechanism-outcome configurations (CMOCs). The CMOCs represent possible care interventions to optimise hearing-related communication in care homes for person living with dementia and hearing loss (PLWDHL). They include leadership promoting positive regard and empathy through person-centred care, communication training for staff, 'knowing the person' and relationship building for responsive awareness of residents' hearing needs, maintaining and monitoring hearing communication through care planning, and managing noise in the care home environment. CONCLUSIONS: Leadership that provides appropriate training and resources is likely to enhance knowledge and skills, leading to staff feeling able and equipped to respond to the hearing-related communication needs of PLWDHL. Collaboration with local hearing services is likely to raise awareness of hearing loss among care home staff. Importantly, care staff require a sense of permission from leadership, to work with knowledge and autonomy in the interest of residents living with dementia and hearing loss.

Co-producing public involvement training with members of the public and research organisations in the East Midlands: creating, delivering and evaluating the lay assessor training programme.

PLAIN ENGLISH SUMMARY: Members of the public share their views with researchers to improve health and social care research. Lay assessing is one way of doing this. This is where people, drawing upon personal and general life experience, comment on material, such as grant applications and patient information, to highlight strengths and weaknesses and to suggest improvements. This paper reports on setting up a training programme for lay assessors. Meetings were held between interested public and staff from research organisations. People discussed what lay assessing is, why they want to do it, skills and support needed and if training was wanted. They were invited to form a group to develop the training together. Training was delivered in the East Midlands. People who attended gave their thoughts about it by completing questionnaires and joining a feedback event. The group developed the structure of the training programme together and it oversaw the development of the training content by individual members. People who attended training reported feeling more confident about lay assessing. This was particularly so for those who had not done lay assessing before. They indicated how valuable it was to talk with others at the training. Our findings support the National Institute for Health Research recommendations for improving learning and development for public involvement in research. This project has created a solid base for local research organisations to work together in public involvement training. Lay assessor training is now part of a wider programme of shared resources called the Sharebank. ABSTRACT: Background Involving members of the public in research can improve its quality and incorporate the needs and views of patients. One method for doing this is lay assessing, where members of the public are consulted to improve research materials. This paper documents the establishment of a pilot training programme for lay assessors. It describes a way of working that embodies a regional, cross-organisational approach to co-producing training with members of the public. Methods Open meetings, led by AH, were held for existing and aspiring lay assessors to define lay assessing, motivations for doing it, skills required, associated learning and development needs, and to gauge interest for training. Those who attended meetings, including members of the public and staff, were invited to form a working group to co-produce the training programme. Training was delivered in modules at two centres in the East Midlands and evaluated through participant feedback at the end of each module and at an evaluation event. Feedback was through a mix of Likert scale scoring, open text and verbal responses. Results Discussions from the open meetings informed the development of the training by the working group. Led by AH, the working group, as a whole, co-produced the structure and format of the training and oversaw training content development by individuals within the group. Training was well-received by participants. Feedback through Likert scoring (n = 14) indicated higher feelings of confidence in knowledge of relevant subject matter and in fulfilling the lay assessor role, particularly amongst those who had not done lay assessing before. Opportunities that the training afforded for interaction between participants - sharing of varied experiences and knowledge - and a 'learn by doing' approach was of particular value, as indicated by 10 responses to open-ended questions. Conclusions This project has created a solid foundation for collaboration between research organisations in the East Midlands in devising and delivering training in public involvement together. Our evaluation provides evidence in support of National Institute for Health Research (NIHR) recommendations on principles for learning and development for public involvement in research.