Several papers (co)-authored by members of the team have been published in the last three months. Have a look at these:
Drawn from life: Co-creating narrative and graphic vignettes of lived experience with people affected by dementia
This study aimed to adapt the Patient and Public Involvement (PPI) process to make participation in cocreation by people living with dementia accessible and meaningful across a spectrum of cognitive abilities. Nine people living with dementia and five family members participated in this study. Narrative elicitation, informal conversation and observation were used to co-create three vignettes based on group members’ personal experiences of dementia services. Each vignette was produced in both narrative and graphic formats. Results show it was possible to adapt the PPI process so that not only family members and people with milder cognitive difficulties could participate, but also those with more pronounced cognitive problems whose voices are less often heard.
To access the publication: Capstick, A., Dennison, A., Oyebode, J., Healy, L., Surr, C., Parveen, S., Sass, C. & Drury, M. (2021). Drawn from life: Cocreating narrative and graphic vignettes of lived experience with people affected by dementia. Health Expectations, 24(5), 1890-1900. https://doi.org/10.1111/hex.13332
Exploring newly qualified nurses’ experiences of support and perceptions of peer support online
The experience of being a newly qualified nurse is stressful and isolating. Support from colleagues and peers can enhance perceptions of competence and confidence in newly qualified nurses, improve well-being and aid retention. However, despite initiatives such as preceptorship, support needs may remain unmet in busy clinical environments. Online support has potential to offer a partial solution to professional isolation, but there is a lack of research into how technology can support nurses’ emotional and social well-being.
A qualitative exploratory study was designed, employing semi-structured focus groups, analysed using thematic analysis. Eight focus groups, supplemented by one individual interview, were conducted with newly qualified nurses. This study demonstrates that if barriers can be overcome, then online support has potential to contribute to newly qualified nurses’ well-being. Further research is needed to explore technical and ethical issues around online support and evaluate its effectiveness for newly qualified nurses.
To access the publication: Jenkins, C., Oyebode, J., Bicknell, S., Webster, N., Bentham, P., & Smythe, A. (2021). Exploring newly qualified nurses’ experiences of support and perceptions of peer support online: A qualitative study. Journal of Clinical Nursing. 30, (19-20), 2924-2934
Current UK clinical practice in diagnosing dementia in younger adults: compliance with quality indicators in electronic health records from mental health trusts
This study aimed to examine current UK practice in diagnosis of patients under 65 with young onset dementia, within 5 years of date of diagnosis, identified from electronic health records of 8 NHS mental health trusts. Patients diagnosed with young onset dementia were assembled from the UK-Clinical Record Interactive System, (UK-CRIS) using diagnosis of dementia as the index date. A pre-designed proforma, derived by international Delphi consensus from experts in the field in previous work, was used to assess components of the diagnostic assessment in 402 electronic health records across 8 NHS sites. Information was extracted on key aspects of clinical and physical examination according to both a minimum and gold standard.
Findings confirmed variation in clinical practice and identified commonly missed items in examination and enquiry compared to expert consensus. This suggests that a template proforma, which contains the key indicators for comprehensive assessment of dementia in young adults according to a quality standard could help support clinicians to improve record keeping and reduce gaps in knowledge.
To access publication: O'Malley, M., Parkes, J., Stamou, V., LaFontaine, J., Oyebode, J. R., Campbell, J., & Carter, J. (2021). Current UK clinical practice in diagnosing dementia in younger adults: compliance with quality indicators in electronic health records from mental health trusts. Aging and Mental Health. https://doi.org/10.1080/13607863.2021.1969640
Developing supportive local communities: Perspectives from people with dementia and carers participating in the IDEAL programme
Communities play an important role in our lives. Local communities do not always provide what people with dementia and their carers need. We wanted to know what people with dementia and carers thought communities could do to help people to live well with the condition. For this study we used information from the IDEAL programme. The IDEAL programme follows a large group of people with dementia and carers over time. It explores what helps people to live well with dementia.
We asked 1,172 people with dementia and 702 carers about their local communities. We asked them to think about what could be changed in the local community. What would make it easier for people with dementia to live well?
There were four common topics people with dementia and carers talked about:
• better understanding of dementia within local communities
• increased access to support and health care services
• access to activities and opportunities to socialise
• support to engage with the local community, including easy-to-use outdoor environments
These findings show that people, resources, and the environment are essential to enable people with dementia to continue living well in the community. There needs to be long-term funding for local services. This will help support people in their local communities.
To access the open access publication: Quinn, C., Hart, N., Henderson, C., Litherland, R., Pickett, J., & Clare, L. (2021). Developing supportive local communities: Perspectives from people with dementia and caregivers participating in the IDEAL programme. Journal of Aging & Social Policy, 1-21. https://doi.org/10.1080/08959420.2021.1973341
Living well with dementia: what is possible and how to promote it
In this paper we discuss living well with dementia. To write this paper we drew on research papers and input from people with dementia. We also included information collected as part of the IDEAL programme. That study looks at what helps people to ‘live well’ with dementia. Many health policies and guidelines talk about living well with dementia. What does it mean to live well? How can we best support people?
Living well will mean different things to different people. We looked at the responses from 1372 people with dementia to the question “‘What does living well mean to you?’ People talked about:
• Having an engaged and active lifestyle
• Having positive relationships with others
• Good living situation and environment
• Having security
• Getting on with life
• Being able to get out and about
• Having a positive outlook on life
• Being able to cope
• Having independence
• Having a purpose
Some of the people who answered this question did not feel they were living well. So, we need to consider what might help them. A lot of things could affect whether someone can live well with dementia. These could include a person’s mental or physical health, independence, or relationships. People with dementia need the right support to help them live well. We came up with some recommendations for health care professionals:
• An assessment of a person’s needs must look at the whole person. It needs to consider for each person what impacts on their well-being.
• Ill-being is not an inevitable consequence of having dementia. A lot of things can influence a person’s capability to live well. Some of these can be treatable with appropriate intervention and support.
• Healthcare professionals have a key role in raising awareness about dementia. They need to signpost people towards local support services.
• Enabling people to live well requires a broad approach. This should include health and social systems and the wider community.
To access the open access publication: Quinn, C., Pickett, J. A., Litherland, R., Morris, R. G., Martyr, A., Clare, L., & On behalf of the IDEAL Programme Team. (2021). Living well with dementia: What is possible and how to promote it. Int J Geriatr Psychiatry. https://doi.org/10.1002/gps.5627
Implementation processes in a cognitive rehabilitation intervention for people with dementia
Healthcare is often delivered through complex interventions. Understanding how to implement these successfully is important for optimising services. This article demonstrates how the complexity theory concept of ‘self-organisation’ can inform implementation, drawing on a process evaluation within a randomised controlled trial of the GREAT (Goal-oriented cognitive Rehabilitation in Early-stage Alzheimer’s and related dementias: a multi-centre single-blind randomised controlled Trial) intervention which compared a cognitive rehabilitation intervention for people with dementia with usual treatment.
A process evaluation examined experiences of GREAT therapists and participants receiving the intervention, through thematic analysis of a focus group with therapists and interviews with participants and their carers. Therapy records of participants receiving the intervention were also analysed using adapted framework analysis. Six therapists took part in a focus group, interviews were conducted with 25 participants and 26 carers, and therapy logs for 50 participants were analysed.
‘Self-organisation’ of the intervention occurred through adaptations made by therapists. Adaptations included simplifying the intervention for people with greater cognitive impairment, and extending it to meet additional needs. Relational work by therapists produced an emergent outcome of ‘social support’. Self-organised aspects of the intervention were less visible than formal components, but were important aspects of how it operated during the trial. This understanding can help to inform future implementation.
To access the publication: Morgan-Trimmer S, Kudlicka A, Warmoth K, Leroi I, Oyebode JR, Pool J, Woods R, Clare L. Implementation processes in a cognitive rehabilitation intervention for people with dementia: a complexity-informed qualitative analysis. BMJ Open. 2021 Oct 26;11(10):e051255. doi: 10.1136/bmjopen-2021-051255.
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