Facilitating an evolving service user involvement group for people with dementia: what can we learn?

Kenny, Jocelyne; Asquith, Ian; Guss, Reinhard; Field, Elizabeth; Slade, Lewis; Bone, Alexandra; Oliver, Keith; Jones, Mark; Ryan, Chris; Brooks, Melvyn; Norris, Christopher M.

doi:10.1108/jmhtep-09-2015-0046

Cited by 8 publications

(4 citation statements)

References 19 publications

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“…All parties should consider the capacity, skills and interests of both the patients and researchers and use these to establish mutually beneficial roles. Our participants' statements were consistent with the observation made elsewhere that meetings can be structured so that discussions occur within small, facilitated groups in which many find it easier to contribute [31].…”

Section: Discussionsupporting

confidence: 88%

It takes two to tango: carers’ reflections on their participation and the participation of people with dementia in the James Lind Alliance process

et al. 2020

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Background Worldwide, patient and public involvement (PPI) in health research has grown steadily in recent decades. The James Lind Alliance (JLA) is one approach to PPI that brings patients, carers and clinicians together to identify priorities for future research in a Priority Setting Partnership (PSP). Our study aim was to describe the reflections of informal carers of people with dementia on the possibility of participating in the JLA’s PSP process, for both themselves and the recipients of their care. In addition, we wanted to explore barriers to and facilitators of their participation. Methods We conducted four focus groups with 36 carers of people with dementia. Thematic analysis was applied to analyse the data. Results An overarching theme emerged from the participants’ reflections: “Creating empowering teams where all voices are heard”. The overarching theme incorporates the participants’ suggestions about the importance of equivalence in power, mutual agreement with and understanding of the goals, adequate support, openness about each partner’s tasks and the bonds needed between the partners to sustain the enterprise, and expectations of positive outcomes. From the overarching theme, two main themes emerged: “Interaction of human factors, the PSP process and the environment” and “The power of position and knowledge”. The overall results indicated that carers are willing to participate in PSP processes and that they thought it important for people with dementia to participate in PSP processes as well, even if some might need extra support to do so. The carers also identified the need for research topics that influence their everyday lives, policy development and healthcare services. Conclusions Both carers and the people with dementia for whom they care are able to contribute to the PSP process when given sufficient support. The involvement of these groups is important for setting healthcare research agendas, developing research projects that increase awareness and knowledge about their circumstances and improving health professionals’, researchers’ and policymakers’ understanding of and insight into their unique situations.

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Section: Discussionsupporting

confidence: 88%

It takes two to tango: carers’ reflections on their participation and the participation of people with dementia in the James Lind Alliance process

et al. 2020

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“…Peer support has been significant in mental health and more recently in supporting people with long-term conditions (Nesta, 2016). Peer support for and by people with dementia is less common, because of assumptions that memory, communication and cognitive problems would render them incapable (Kenny et al , 2016). However, there is some evidence that peer support for people with dementia is effective (Healthbridge, 2013; Mental Health Foundation, 2014; Nesta 2016; NDTI, 2014) There are several different models, mostly involving support workers, professional staff, service navigators or dementia advisors with varying degrees of user involvement.…”

Section: Peer Supportmentioning

confidence: 99%

“…In keeping with the project specification, the peer support service would be delivered by people living with dementia for people living with dementia, rather than by professional staff and volunteers. In this respect, it would be the first-known community-based service of its kind to be funded by the NHS (Kenny et al , 2016).…”

Section: Realising the Vision Of A Dpspmentioning

confidence: 99%

Dementia peer support: service delivery for the people, by the people

Femiola

Tilki²

2017

WWOP

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Purpose The purpose of this paper is to describe a community-based peer support project in the London borough of Brent, led by people living with dementia for people living with dementia. Design/methodology/approach The Brent Dementia Peer Support Project is a collaboration between a social movement Community Action on Dementia Brent, Brent CCG, Brent Council, third-sector organisations and faith communities. Findings Stakeholder workshops, ethnographic research highlighted the need to support people living with dementia, especially by people who understand that experience. The findings also demonstrated the abilities and skills retained by people living with dementia, their wish to help others to contribute and to remain connected with their communities. Research limitations/implications This is an account of one pilot project in a London borough, but is broadly applicable elsewhere. Further research is needed into the values and practicalities of peer support by and for people living with dementia. Practical implications People with dementia and their carers lack accessible information and empathetic support to cope with the condition and live independently. This can be offered through dementia peer support services. Social implications There are growing numbers of people living with dementia who are motivated to share their knowledge, skills and experiences to improve the lives of other people with dementia. Originality/value This paper describes how people with dementia can be enabled to design, inform and deliver support to other people with the condition.

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“…Service user involvement in the planning and provision of mental health services has been growing over recent years (Ferraz, 2018) and is becoming widely recognised for its benefits for both users and services. However, despite reinforcement from policies and good practice guidelines, service user involvement in shaping mental health service provision is still infrequent (Tait and Lester, 2005), and clients with dementia are particularly underrepresented (Kenny et al, 2016).…”

Section: Introductionmentioning

confidence: 99%

Overcoming challenges in service user involvement in an older people’s mental health service

Smith

Abbas

Zegarra

2020

MHSI

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Purpose The purpose of this paper is to describe how an older people’s mental health service involves service users in research and service improvement projects, the value of this work and the ways in which barriers to user-led research have been approached and handled. Design/methodology/approach The authors conducted a reflective review of their experiences of running “ResearchNet”, a group aimed at putting service users’ perspectives at the heart of service improvement projects, which benefits from and develops its members’ related skills. The authors explore overcoming barriers to service user involvement in research. Findings This paper identified the following key elements that enabled ResearchNet to overcome barriers which might be found in service user–led research: recruitment processes; identifying research projects; building confidence, sustaining motivation and overcoming setbacks; developing service user’s research skills; keeping multiple views in mind; involving people with dementia; being responsive to group members’ needs; and keeping the group safe. Practical implications Oxleas National Health Service is currently looking at integrating with the quality improvement team to provide further structure and training to group members. Originality/value This paper explores an under-represented area of research – service user inclusion in older adult mental health research and service improvement. It provides much needed clinical implications for clinicians seeking to increase clients’ involvement in research and service development projects.

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Facilitating an evolving service user involvement group for people with dementia: what can we learn?

Cited by 8 publications

References 19 publications

It takes two to tango: carers’ reflections on their participation and the participation of people with dementia in the James Lind Alliance process

It takes two to tango: carers’ reflections on their participation and the participation of people with dementia in the James Lind Alliance process

Dementia peer support: service delivery for the people, by the people

Overcoming challenges in service user involvement in an older people’s mental health service

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