ArticleHealth expectations : an international journal of public participation in health care and health policy2015
Contextualizing the findings of a systematic review on patient and carer experiences of dementia diagnosis and treatment: a qualitative study.
Article in Health expectations : an international journal of public participation in health care and health policy, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers, 2 of them syntheses that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
14 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- People With Dementia Disclosing Their Diagnosis to Social Networks: A Systematic Review and Meta-Synthesis.The Gerontologist · 2025Pooled it
- Exploring how triads of people living with dementia, carers and health care professionals function in dementia health care: A systematic qualitative review and thematic synthesis.Dementia (London, England) · 2021Pooled it
- Trauma-Informed Support in a Dementia Helpline: Retrospective Mixed Methods Study.JMIR formative research · 2026Article
- A mapping review of studies exploring the barriers and facilitators to a dementia diagnosis through an intersectionality lens.BJPsych open · 2025Review
- A neuropsychological feedback model for memory clinic trainees.BMC medical education · 2024Review
- Connecting, learning, supporting: Caregivers' experiences of a stress and distress biopsychosocial group intervention.Dementia (London, England) · 2024Article
- Contextualizing the results of an integrative review on the characteristics of dementia-friendly hospitals: a workshop with professional dementia experts.BMC geriatrics · 2023Review
- "It's Another Feather in My Hat"-Exploring Factors Influencing the Adoption of Apps With People Living With Dementia.Dementia (London, England) · 2023Article
- Young onset dementia: Public involvement in co-designing community-based support.Dementia (London, England) · 2020Article
- Patient and public involvement in dementia research in the European Union: a scoping review.BMC geriatrics · 2019Article
- Towards capturing meaningful outcomes for people with dementia in psychosocial intervention research: A pan-European consultation.Health expectations : an international journal of public participation in health care and health policy · 2018Article
- Stakeholder involvement in systematic reviews: a scoping review.Systematic reviews · 2018Article
- A protocol to evaluate the impact of involvement of older people with dementia and age-related hearing and/or vision impairment in a multi-site European research study.Research involvement and engagement · 2018Article
- How stakeholder participation can contribute to systematic reviews of complex interventions.Journal of epidemiology and community health · 2016Review
Corrections and comments
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Authors and funding
6 authors.
Funding
Abstract
backgroundInvolving service users in the systematic review process is seen as increasingly important. As systematic reviews often include studies from diverse settings and covering a time span of several decades, involving service users in consideration of applicability to specific populations or settings might make reviews more useful to practitioners and policymakers.
objectivesTo test and contextualize the findings of a systematic review of qualitative studies looking at patient and carer experiences of diagnosis and treatment of dementia.
methodsResults from the systematic review were discussed in focus groups and semi-structured interviews with patient, public and professional participants in the South East of England. Analysis was guided by coding frameworks developed from the results of the systematic review.
participantsWe recruited 27 participants, including three people with dementia, 12 carers, six service providers and five older people without dementia.
resultsFindings from the focus groups and interviews were consistent with those from the systematic review and suggest that our review findings were applicable to the local setting. We found some evidence that access to information and diagnostic services had improved but, as in the systematic review, post-diagnosis support was still often experienced as inadequate.
conclusionsFocus groups and interviews with service users and their representatives can provide useful contextual information. However, such strategies can require considerable investment of the part of the researcher in terms of time and resources, and more work is needed to refine strategies and establish the benefits for patients and the organization of services.
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Registered trials
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