Search results

In Sweden, the care of older people and people with disabilities is increasingly carried out by informal carers, often family members, who are unpaid and outside a professional or formal framework. While there is an increasing awareness of the role of carers within service systems and their own needs for support, their involvement in research is underexplored. The purpose of this paper is to explore carers’ views and experiences of involvement in research and development (R&D) work.

A qualitative study was conducted, consisting of 12 individual interviews with carers from different local Swedish carer organizations.

Core findings included carers’ discussions of the perceived challenges and benefits of their involvement in research, both generally and more specifically, in the context of their involvement in the development of a national carer strategy.

Limitations included the relative lack of male carer participants and the convenience sample.

Authentic carer involvement in research demands a high level of engagement from researchers during the entire research process. The provided CRAC framework, with reference to the themes community, reciprocity, advocacy and circumstantiality, may help researchers to understand and interpret carer involvement in research and provide the prerequisites for their involvement.

There is a dearth of studies that systematically examine carer involvement in research. This paper attempts to redress this gap by providing a nuanced analysis of carer involvement in R&D work from the perspective of carers themselves.

The involvement of patients or members of the public within public health, health and social care and addictions services is growing in the UK and internationally but is less common in gambling support services. The purpose of this study was to explore Patient and Public Involvement (PPI) infrastructures and engagement channels used in health and care services and debate their transferability to the gambling support sector (including research, education and treatment).

A narrative review examined data from six English language electronic databases, NHS evidence and grey literature covering the period 2007–2019. We identified 130 relevant items from UK literature. A workshop was held in London, England, with people with lived experience of gambling harm to seek their views on and applicability of the review findings to gambling services.

Synthesis of literature and workshop data was undertaken. Main themes addressed “What works” in relation to: building infrastructures and organising involvement of people with lived experience; what people want to be involved in; widening participation and sustaining involvement and respecting people with lived experience.

Examination of the literature about involvement and engagement of patients, service users and the public in public health, health and social care and addiction services provides potentially useful examples of good practice which may be adopted by gambling services.

The involvement of people with lived experience of gambling harms in gambling support services is under-explored, with little published evidence of what constitutes good practice amongst self-organising groups/networks/grassroots organisations or rights-based/empowerment-based approaches.

Secure mental health services in one UK region have acted within a network to develop a range of involvement practices. A new quality benchmarking tool has been created to appraise the implementation of these involvement practices. The purpose of this paper is to report upon a qualitative evaluation of this development.

Staff and service users involved in the co-production of the benchmarking tool were engaged in a series of focus groups and participatory inquiry approaches enacted in the course of scheduled network meetings. Data thus collected was subject to thematic analysis.

Four distinct themes were identified which were titled: Taking time, taking care; The value not the label; An instrument of the network; and All people working together. These are discussed in relation to recent theorising of co-production.

Effectively, this study represents a case study of developments within one region. As such, the findings may have limited transferability to other contexts.

Staff and service users can work together effectively to the benefit of each other and overall forensic services. The benchmarking tool provides a readymade mechanism to appraise quality improvements.

Despite a prevailing culture of competition in wider health-care policy, cooperation leads to enhanced quality.

The benchmarking tool is a unique development of a longstanding involvement network, demonstrating the positive implications for enacting co-production within secure services.

The purpose of this paper is to report on the views and experiences of older people using Shared Lives (adult placement) in 2012/2013.

As part of a survey collecting information about outcomes for older users of Shared Lives issues of whether it had made a difference to quality of life, and positive and negative experiences of support were explored.

Questionnaires were returned by 150 older people using Shared Lives services. Findings suggest that this model of community-based support has a number of advantages for some older people, such as reducing social isolation and loneliness, promoting independence, choice and control, providing emotional support and increased well-being.

The questionnaire was self-completed and so responses were not followed up to provide deeper insights.

Shared Lives is not appropriate for everyone but it is suggested that this option should form part of local commissioning strategies, be part of a range of options for social care practitioners to consider in their work with older people and helps to meet various current policy imperatives.

The potential of Shared Lives for older people is under-researched and this paper contributes to the literature in exploring the views of older people about family-based support in the community.

This research priority setting partnership (PSP) aims to collaboratively identify the “top ten” research priorities relating to communication and swallowing for children and adults with learning disabilities, across the lifespan in the UK, using a modified James Lind Alliance approach.

A steering group and reference group were established to oversee the PSP. A survey of speech and language therapists (SLTs) resulted in 157 research suggestions. These were further developed into 95 research questions through a multi-stakeholder workshop. Questions were prioritised via an online card-sort activity completed by SLTs, health-care or education professionals and carers. Research questions were analysed thematically. Ten adults with learning disabilities were supported to assign ratings to themes reflecting their prioritisation. The top ten research priorities were identified by combining results from these activities.

The top ten research priorities related to intervention, outcome measurement and service delivery around communication and dysphagia.

To the best of the authors’ knowledge, this is the first UK-wide research PSP on learning disabilities and speech and language therapy across the lifespan. It uses a novel approach to incorporate the preferences of people with learning disabilities in the prioritisation.

The purpose is to share strategies, rationales and lessons learnt from user involvement in a quality and safety improvement research project from the practice field in nursing homes and homecare services.

This is a viewpoint paper summarizing how researchers and co-researchers from the practice field of nursing homes and homecare services (nurse counsellors from different municipalities, patient ombudsman and next-of-kin representatives/and elderly care organization representant) experienced user involvement through all phases of the research project. The project included implementation of a leadership intervention.

Multiple strategies of user involvement were applied during the project including partnership in the consortium, employment of user representatives (co-researchers) and user-led research activities. The rationale was to ensure sound context adaptation of the intervention and development of tailor-made activities and tools based on equality and mutual trust in the collaboration. Both university-based researchers and Co-researchers experienced it as useful and necessary to involve or being involved in all phases of the research project, including the designing, planning, intervention implementation, evaluation and dissemination of results.

User involvement in research is a growing field. There is limited focus on this aspect in quality and safety interventions in nursing homes and homecare settings and in projects focussing on the leadership' role in improving quality and safety.

The purpose of this paper is to understand factors that affect viewing of television news programmes by people living with dementia, and to identify dementia-friendly design principles for television news programmes and factors for personalising object-based media broadcast.

Extensive public involvement comprising two discussion groups with people with dementia and family carers informed the study design and provided supplementary secondary data. Primary data collection comprised a focus group interview with people with dementia (n=4) and family carers (n=4). Past viewing experiences and perceived barriers and facilitators to viewing television were explored. Participants commented on an array of video clips comprising varying segments of fictional news programmes, plus control versions of each segment.

Four themes were identified: content (general comments, context, type of media and pace); presenter (body language, clothing and accent); background (location and studio appearance); and technical aspects (graphics, sound, colours, camera, transitions, general issues).

Limitations included a modest sample size which is offset by exemplary public involvement in informing the study design.

Measures ensured research involvement and participation was made accessible to people living with dementia.

Participants benefited from sharing views with peers and expressed enhanced wellbeing from knowing their participation could lead to improved television viewing, an important social occupation, for people with dementia in the future.

This study is the first to be published which focusses on dementia-friendly television news programmes.

This paper aims to share how the Centre for Ageing and Dementia Research co-designs research within a national programme of work to improve the lives of older adults and those affected by dementia. Through examples of this work, the authors identify the barriers and enablers to participatory approaches and lessons to inform future involvement activities.

This study reflects on implementing the UK National Standards for Public Involvement into practice. Of international relevance, the observations span the research process from research prioritisation and design to research implementation and knowledge exchange.

This study demonstrates the importance of using a relational approach, working toward a common purpose and engaging in meaningful dialogue. Only through offering choice and flexibility and actively learning from one another can co-design lead to synergistic relationships that benefit everyone.

Key implications for researchers engaged in patient and public involvement are be receptive to other people’s views and acknowledge expertise of those with lived experience alongside those with academic expertise. Training, resources and time are required to effectively support involvement and meaningful relationships. A nominated contact person enables trust and mutual understanding to develop. This is an ongoing collective learning experience that should be embedded throughout the entire research process.

This paper demonstrates how the standards are implemented with people who are often excluded from research to influence a national programme of work.

The aim of this action research was to explore, from a workforce and a patient/carer perspective, the skills and the capacity required to deliver integrated care and to inform future workforce development and planning in a new integrated care system in England.

Semi-structured interviews and focus groups with primary, community, acute care, social care and voluntary care, frontline and managerial staff and with patients and carers receiving these services were undertaken. Data were explored using framework analysis.

Analysis revealed three overarching themes: achieving teamwork and integration, managing demands on capacity and capability and delivering holistic and user-centred care. An organisational development (OD) process was developed as part of the action research process to facilitate the large-scale workforce changes taking place.

This study did not consider workforce development and planning challenges for nursing and care staff in residential, nursing care homes or domiciliary services. This part of the workforce is integral to the care pathways for many patients, and in line with the current emerging national focus on this sector, these groups require further examination. Further, data explore service users' and carers' perspectives on workforce skills. It proved challenging to recruit patient and carer respondents for the research due to the nature of their illnesses.

Many of the required skills already existed within the workforce. The OD process facilitated collaborative learning to enhance skills; however, workforce planning across a whole system has challenges in relation to data gathering and management. Ensuring a focus on workforce development and planning is an important part of integrated care development.

This study has implications for social and voluntary sector organisations in respect of inter-agency working practices, as well as the identification of workforce development needs and potential for informing subsequent cross-sector workforce planning arrangements and communication.

This paper helps to identify the issues and benefits of implementing person-centred, integrated teamworking and the implications for workforce planning and OD approaches.

The purpose of this paper is to investigate the operation of multidisciplinary team (MDT) meetings within a forensic hospital in England, UK.

Mixed methods, including qualitative face to face interviews with professionals and service users, video observations of MDT meetings and documentary analysis. Data were collected from 142 staff and 30 service users who consented to take part in the research and analysed using the constant comparison technique of grounded theory and ethnography.

Decisions taken within MDT meetings are unequally shaped by the professional and personal values and assumptions of those involved, as well as by the power dynamics linked to the knowledge and responsibility of each member of the team. Service users’ involvement is marginalised. This is linked to a longstanding tradition of psychiatric paternalism in mental health care.

Future research should explore the nuances of interactions between MDT professionals and service users during the meetings, the language used and the approach taken by professionals to enable/empower service user to be actively involved.

Clear aims, responsibilities and implementation actions are a pre-requisite to effective MDT working. There is a need to give service users greater responsibility and power regarding their care.

While direct (video) observations were very difficult to achieve in secure settings, they enabled unmediated access to how people conducted themselves rather than having to rely only on their subjective accounts (from the interviews).