Applying a new concept of embedding qualitative research: an example from a quantitative study of carers of people in later stage dementia

Abendstern, Michele; Davies, Karen; Chester, Helen; Clarkson, Paul; Sutcliffe, Caroline; Hughes, Jane; Poland, Fiona; Challis, David

Abstract

Background
Qualitative methods are increasingly included in larger studies to provide a richer understanding of people’s experience. This paper explores the potential of using a novel approach to embedded qualitative design as part of an observational study examining the effectiveness of home support for people in later stage dementia in England. The method involved collecting and analysing unsolicited conversational comments made by participants as they completed standardised measures. An evaluation of the method is presented using the voices of participants to illustrate its potential.

Methods
The conversations of 17 carers recruited to an observational study were audio recorded to gather commentary made while completing a structured interview. Data were interrogated using thematic analysis to investigate the feasibility of conducting an embedded qualitative study, the potential richness of the material and participants’ reactions to formal questioning and participating in research.

Results
The findings revealed that qualitative data were available from this approach. Analysis generated three themes from carers: conflicting carer emotions; the importance of maintaining normality and agency within day-to-day life; and tensions between these desires and making use of formal services. Important issues for carers were revealed establishing the benefit of using the method. The advantages of exploiting unsolicited conversation included enhancing understanding of people’s lived experience, reducing participant burden in research and easing the process of data collection. In addition, it provided an opportunity to evaluate individuals’ experience of the research process.

Conclusions
The findings demonstrate how unsolicited comments during structured interviews may appear incidental but can reveal important aspects of living with dementia. The method also emphasised methodological challenges for research in dementia, including the influence and impact of the research context. Further research is required to evaluate the method with other groups including people with dementia themselves.

Citation

Abendstern, M., Davies, K., Chester, H., Clarkson, P., Sutcliffe, C., Hughes, J., …Challis, D. (2019). Applying a new concept of embedding qualitative research: an example from a quantitative study of carers of people in later stage dementia. BMC Geriatrics, 19(1), Article 227. https://doi.org/10.1186/s12877-019-1240-x

• Journal Article Type: Article
• Acceptance Date: Jul 31, 2019
• Online Publication Date: Aug 22, 2019
• Publication Date: 2019-12
• Deposit Date: Sep 19, 2019
• Publicly Available Date: Sep 19, 2019
• Journal: BMC Geriatrics
• Electronic ISSN: 1471-2318
• Publisher: Springer Verlag
• Peer Reviewed: Peer Reviewed
• Volume: 19
• Issue: 1
• Article Number: 227
• DOI: https://doi.org/10.1186/s12877-019-1240-x
• Keywords: Embedded study; Qualitative methods; Dementia; Carers; Expressed preferences
• Public URL: https://nottingham-repository.worktribe.com/output/2635131
• Additional Information: Received: 30 August 2018; Accepted: 31 July 2019; First Online: 22 August 2019; : Ethical approval for the study was granted by the National Research Ethics Service (NRES) (15/NW/0822). Information sheets were given to potential participants by staff working within support agencies who also gained their consent to be contacted by a member of the research team. Informed consent was sought from participants just prior to interview. This included written consent to take part in the interview, to be audio recorded and to use data from the recording and paper questionnaire in publications. Participants were assured that all data would be anonymised. The structured interview schedule was designed to minimise participant burden whilst assurance was given that their participation or non-participation, would not influence their care arrangements.; : Participants gave written consent to participate in the study including the publication of anonymised data.; : The authors declare that they have no competing interests.