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Ethical and methodological issues in interviewing persons with dementia
Linköpings universitet.
University of Sheffield, Sheffield, UK.
Ersta Sköndal University College, Enheten för forskning i palliativ vård.
Linköpings universitet, Institutionen för samhälls- och välfärdsstudier ; Linköpings universitet, Hälsouniversitetet.
2007 (English)In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 14, no 5, 608-619 p.Article in journal (Refereed) Published
Abstract [en]

People with dementia have previously not been active participantsin research, with ethical difficulties often being cited asthe reason for this. A wider inclusion of people with dementiain research raises several ethical and methodological challenges.This article adds to the emerging debate by reflecting on theethical and methodological issues raised during an interviewstudy involving people with dementia and their spouses. Thestudy sought to explore the impact of living with dementia.We argue that there is support for the inclusion of people withdementia in research and that the benefits of participationusually far outweigh the risks, particularly when a `safe context'has been created. The role of gatekeepers as potentially responsiblefor excluding people with dementia needs further consideration,with particular reference to the appropriateness of viewingconsent as a primarily cognitive, universalistic and exclusionaryevent as opposed to a more particularistic, inclusive and contextrelevant process.

Place, publisher, year, edition, pages
2007. Vol. 14, no 5, 608-619 p.
Keyword [en]
dementia, ethical considerations, informed consent
National Category
Nursing
Identifiers
URN: urn:nbn:se:esh:diva-886DOI: 10.1177/0969733007080206OAI: oai:DiVA.org:esh-886DiVA: diva2:376430
Projects
Hemmet som den sista vårdplatsen
Available from: 2010-12-10 Created: 2010-12-10 Last updated: 2017-01-17Bibliographically approved
In thesis
1. Exploring 'couplehood' in dementia: a constructivist grounded theory study
Open this publication in new window or tab >>Exploring 'couplehood' in dementia: a constructivist grounded theory study
2005 (English)Doctoral thesis, comprehensive summary (Other academic)
Alternative title[sv]
Parrelationer i förändring vid demenssjukdom : en studie med konstruktivistisk grundad teori
Abstract [en]

  The overall aim of this thesis is to gain a better understanding how people with dementia and their spouses experience dementia over time, especially the impact it has on their inter-personal relationships and patterns of everyday life. Data were collected using separate semi-structured interviews with 20 persons with dementia and their spouses of 6 monthly intervals over an 18-months period (132 interviews in total), and analysed using constructivist grounded theory.

Analysis suggested that whilst spouses are aware of and acknowledge the diagnosis of dementia, they do not routinely talk about it but rather the focus of their combined efforts is on making life as meaningful as possible. To do this couples, rather than individuals, actively ‘work together’ to create a ‘nurturative relational context’ in order to sustain the quality of their relationship, and maintain the self-image and sense of agency of the person with dementia.

In order to create a ‘nurturative relational context’ couples continued to ‘do things together’ for as long as possible by understanding complementary roles underpinned by a mutual appreciation of each others contribution in a way that builds upon the remaining strengths of the person with dementia. Their focus is therefore on ‘couplehood’ as much as ‘personhood’.

An analysis of the complete data set identified three temporally sequenced but overlapping phases of the experience of couplehood termed ‘sustaining couplehood’, ‘maintaining involvement’, and ‘becoming alone’. ‘Sustaining couplehood’ had the primary goal of ensuring that the spuses’ ‘work’. This involved four interrelated sets of activities: talking things through, in order to ensure good communication and acknowledge and value differences; being affectionate and appreciative by demonstrating continued attractiveness to their spouse; making the most of things by enjoying everyday pleasures, looking for positive interpretations of events and focussing on the present (living for today); and finally, keeping the peace by being aware of potential points of friction and not responding to difficult behaviour. Both the person with dementia and the non-affected spouse were active strategies in the above process.

In addition both spouses worked to ‘maintain the involvement’ of the person with dementia by ensuring that they had an active role to play. However, despite their efforts, eventually the non-affected spouse took on an increasing role and this occurred in a number of ways, either by the person with dementia consciously ‘handing over’ responsibility or more passively ‘letting go’, or by the non-affected spouse ‘taking over’.

‘Sustaining couplehood’ and ‘maintaining involvement’ often occurred simultaneously but the relative emphasis changed over time as ‘sustaining couplehood’ became more difficult and increasing effort was expended in ‘maintaining involvement’. As this occurred the data suggested that the non-affected spouse became increasingly ‘alone’ as the dementia progressed. This process has yet to be fully explored, however, it is clear that for spouses a complete understanding of the dementia experience is not possible without consideration of ‘couplehood’.

Place, publisher, year, edition, pages
Linköping: Linköpings universitet, 2005. 49 p.
Series
Linköping University medical dissertations, ISSN 0345-0082 ; 895
Keyword
dementia, spousal relationship, couplehood, grounded theory
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-887 (URN)91-85299-04-9 (ISBN)
Public defence
2005-05-20, Kåkenhus, Campus Norrköping, Norrköping, 09:00 (English)
Opponent
Supervisors
Projects
Hemmet som den sista vårdplatsen
Available from: 2010-12-10 Created: 2010-12-10 Last updated: 2017-01-17Bibliographically approved

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