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Centre for Policy on Ageing | |
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| A processural consent methodology with people diagnosed with dementia | | Author(s) | Tessa Hughes, Maria Castro Romero |
| Journal title | Quality in Ageing and Older Adults, vol 16, no 4, 2015 |
| Publisher | Emerald, 2015 |
| Pages | pp 222-234 |
| Source | www.emeraldgrouppublishing.com/qaoa.htm |
| Keywords | Dementia ; Diagnosis ; Mental health [elderly] ; Participation ; Social ethics ; Research ; Methodology. |
| Annotation | This paper aims to develop an approach within the guidance of the Mental Capacity Act 2005, to meaningfully include people diagnosed with dementia (PDwD) in research endeavours. As part of a broader study of self-authored narratives of care experiences, PDwD were involved in the development and implementation of a process method of consent, in which consent conversations were contextual, responsive and ongoing, and were audited with the use of field diaries. The authors found that working within people's relational contexts (i.e. care staff and family), eight participants with a range of dementia diagnoses and care needs made and verbally communicated research-related decisions. A desire to participate was consistently conveyed across research encounters, regardless of the extent of memory problems. Participants also demonstrated keen awareness of the links between memory problems, rights and inclusion, alongside a sense of personal identity and the capacities to clearly communicate this. A process model of consent encouraged formal reflection upon ethical and pragmatic complexities, and is relevant to people diagnosed with dementia making both care- and research-related decisions. Further work is needed, to include people with a broader range of communication support needs. This research demonstrates substantial possibilities for eliciting and responding to the views of people with dementia diagnoses (previously excluded from research). Results open opportunities for genuine long-term research and care partnerships with PDwD for practice, service and policy development. (RH). |
| Accession Number | CPA-170512222 A |
| Classmark | EA: LK7: D: TMB: TQ: 3A: 3D |
Data © Centre for Policy on Ageing |
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| ...from the Ageinfo database published by Centre for Policy on Ageing. |
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