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Published in: BMC Geriatrics 1/2019

Open Access 01-12-2019 | Dementia | Research article

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

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

Published in: BMC Geriatrics | Issue 1/2019

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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.
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Literature
1.
go back to reference Johnson RB, Onwuegbuzie AJ. Mixed methods research: a research paradigm whose time has come. Educ Res. 2004;33(7):14–26.CrossRef Johnson RB, Onwuegbuzie AJ. Mixed methods research: a research paradigm whose time has come. Educ Res. 2004;33(7):14–26.CrossRef
2.
go back to reference Creswell JW, Klassen AC, Plano Clark VL, Smith KC. Best practices for mixed methods research in the health sciences. Bethesda: National Institutes of Health; 2013. p. 541–5. Creswell JW, Klassen AC, Plano Clark VL, Smith KC. Best practices for mixed methods research in the health sciences. Bethesda: National Institutes of Health; 2013. p. 541–5.
3.
go back to reference Plano Clark VL, Schumache K, West C, Edrington J, Dunn LB, Harzstark A, Melisko M, Rabow MW, Swift PS, Miaskowski C. Practices for embedding an interpretive qualitative approach within a randomized clinical trial. J Mixed Methods Res. 2013;7(3):219–42.CrossRef Plano Clark VL, Schumache K, West C, Edrington J, Dunn LB, Harzstark A, Melisko M, Rabow MW, Swift PS, Miaskowski C. Practices for embedding an interpretive qualitative approach within a randomized clinical trial. J Mixed Methods Res. 2013;7(3):219–42.CrossRef
4.
go back to reference Maggs-Rapport F. Combining methodological approaches in research: ethnography and interpretive phenomenology. J Adv Nurs. 2000;31(1):219–25.PubMedCrossRef Maggs-Rapport F. Combining methodological approaches in research: ethnography and interpretive phenomenology. J Adv Nurs. 2000;31(1):219–25.PubMedCrossRef
5.
go back to reference Chester H, Clarkson P, Hughes J, Russell I, Beresford J, Davies L, Jolley D, Peconi J, Poland F, Roberts C, Sutcliffe C. Evaluating the effectiveness of different approaches to home support for people in later stage dementia: a protocol for an observational study. Int Psychogeriatr. 2017;29(7):1213–21. https://doi.org/10.1017/S1041610217000291.PubMedCrossRef Chester H, Clarkson P, Hughes J, Russell I, Beresford J, Davies L, Jolley D, Peconi J, Poland F, Roberts C, Sutcliffe C. Evaluating the effectiveness of different approaches to home support for people in later stage dementia: a protocol for an observational study. Int Psychogeriatr. 2017;29(7):1213–21. https://​doi.​org/​10.​1017/​S104161021700029​1.PubMedCrossRef
6.
go back to reference Poland F, Birt L. The agentic person: shifting the focus of care. Aging Ment Health. 2016;20(8):771–2.PubMedCrossRef Poland F, Birt L. The agentic person: shifting the focus of care. Aging Ment Health. 2016;20(8):771–2.PubMedCrossRef
7.
go back to reference Sharp S, Saunders T, O’Brien N. The £20 billion question - an inquiry into improving lives through cost effective dementia services, all party parliamentary group; 2011. Sharp S, Saunders T, O’Brien N. The £20 billion question - an inquiry into improving lives through cost effective dementia services, all party parliamentary group; 2011.
8.
go back to reference King’s Fund. Paying the price: the cost of mental health in England to 2026. London: King’s Fund; 2008. King’s Fund. Paying the price: the cost of mental health in England to 2026. London: King’s Fund; 2008.
9.
go back to reference Knapp M, Prince M, Albanese E, Banerjee S, Dhanasiri S, Fernandez JL. Dementia UK: London School of Economics/King’s College London. London: Alzheimer’s Society; 2007. Knapp M, Prince M, Albanese E, Banerjee S, Dhanasiri S, Fernandez JL. Dementia UK: London School of Economics/King’s College London. London: Alzheimer’s Society; 2007.
10.
go back to reference Wimo A, Guerchet M, Ali GC, Wu YT, Prina AM, Winblad B, Jönsson L, Liu Z, Prince M. The worldwide costs of dementia 2015 and comparisons with 2010. Alzheimers Dement. 2017;13(1):1–7.PubMedPubMedCentralCrossRef Wimo A, Guerchet M, Ali GC, Wu YT, Prina AM, Winblad B, Jönsson L, Liu Z, Prince M. The worldwide costs of dementia 2015 and comparisons with 2010. Alzheimers Dement. 2017;13(1):1–7.PubMedPubMedCentralCrossRef
11.
go back to reference Sabat S. Surviving manifestations of selfhood in Alzheimer’s disease. Dementia. 2002;1(1):25–36.CrossRef Sabat S. Surviving manifestations of selfhood in Alzheimer’s disease. Dementia. 2002;1(1):25–36.CrossRef
12.
go back to reference McDowell I. Measuring health: a guide to rating scales and questionnaires. USA: Oxford University Press; 2006.CrossRef McDowell I. Measuring health: a guide to rating scales and questionnaires. USA: Oxford University Press; 2006.CrossRef
13.
go back to reference McCabe M, You E, Tatangelo G. Hearing their voice: a systematic review of dementia family caregivers’ needs. Gerontologist. 2016;56(5):e70–88.PubMedCrossRef McCabe M, You E, Tatangelo G. Hearing their voice: a systematic review of dementia family caregivers’ needs. Gerontologist. 2016;56(5):e70–88.PubMedCrossRef
14.
go back to reference Peel E. ‘The living death of Alzheimer's’ versus ‘Take a walk to keep dementia at bay’: representations of dementia in print media and carer discourse. Sociol Health Illn. 2014;36(6):885–901.PubMedPubMedCentralCrossRef Peel E. ‘The living death of Alzheimer's’ versus ‘Take a walk to keep dementia at bay’: representations of dementia in print media and carer discourse. Sociol Health Illn. 2014;36(6):885–901.PubMedPubMedCentralCrossRef
16.
go back to reference Levin E, Sinclair I, Gorbach P. Families confusion and old age. Aldershot: Gower; 1989. Levin E, Sinclair I, Gorbach P. Families confusion and old age. Aldershot: Gower; 1989.
17.
go back to reference Wenger GC, Tucker I. Using network variation in practice: identification of support network type. Health Soc Care Community. 2002;10(1):28–35.PubMedCrossRef Wenger GC, Tucker I. Using network variation in practice: identification of support network type. Health Soc Care Community. 2002;10(1):28–35.PubMedCrossRef
18.
go back to reference Wenger GC. A network typology: from theory to practice. J Aging Stud. 1991;5(2):147–62.CrossRef Wenger GC. A network typology: from theory to practice. J Aging Stud. 1991;5(2):147–62.CrossRef
19.
go back to reference Bowen GA. Naturalistic inquiry and the saturation concept: a research note. Qual Res. 2008;8(1):137–52.CrossRef Bowen GA. Naturalistic inquiry and the saturation concept: a research note. Qual Res. 2008;8(1):137–52.CrossRef
20.
go back to reference Guest G, Bruce A, Johnson L. How many interviews are enough? An experiment with data saturation and variability. Field Methods. 2006;18(1):59–82.CrossRef Guest G, Bruce A, Johnson L. How many interviews are enough? An experiment with data saturation and variability. Field Methods. 2006;18(1):59–82.CrossRef
21.
go back to reference Bucks RS, Ashworth DL, Wilcock GK, Siegfried K. Assessment of activities of daily living in dementia: development of the Bristol activities of daily living scale. Age Ageing. 1996;25(2):113–20.PubMedCrossRef Bucks RS, Ashworth DL, Wilcock GK, Siegfried K. Assessment of activities of daily living in dementia: development of the Bristol activities of daily living scale. Age Ageing. 1996;25(2):113–20.PubMedCrossRef
22.
go back to reference Smith SC, Lamping DL, Banerjee S, Harwood R, Foley B, Smith P, Cook JC, Murray J, Prince M, Levin E, Mann A. Measurement of health-related quality of life for people with dementia: development of a new instrument (DEMQOL) and an evaluation of current methodology. Health Technol Assess. 2005;9(10):1–93.PubMedCrossRef Smith SC, Lamping DL, Banerjee S, Harwood R, Foley B, Smith P, Cook JC, Murray J, Prince M, Levin E, Mann A. Measurement of health-related quality of life for people with dementia: development of a new instrument (DEMQOL) and an evaluation of current methodology. Health Technol Assess. 2005;9(10):1–93.PubMedCrossRef
23.
go back to reference Herdman M, Gudex C, Lloyd A, Janssen MF, Kind P, Parkin D, Bonsel G, Badia X. Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L). Qual Life Res. 2011;20(10):1727–36.PubMedPubMedCentralCrossRef Herdman M, Gudex C, Lloyd A, Janssen MF, Kind P, Parkin D, Bonsel G, Badia X. Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L). Qual Life Res. 2011;20(10):1727–36.PubMedPubMedCentralCrossRef
24.
go back to reference Goldberg DP. Manual of the general health questionnaire. Windsor: NFER-Nelson; 1978. Goldberg DP. Manual of the general health questionnaire. Windsor: NFER-Nelson; 1978.
25.
go back to reference Vernooji-Dassen M, Felling A, Brummelkamp E, Dauzenberg M, van den Bos G, Grol R. Assessment of caregiver's competence in dealing with the burden of caregiving for a dementia patient: a short sense of competence questionnaire (SSCQ) suitable for clinical practice. J Am Geriatr Soc. 1999;47(2):256–7.CrossRef Vernooji-Dassen M, Felling A, Brummelkamp E, Dauzenberg M, van den Bos G, Grol R. Assessment of caregiver's competence in dealing with the burden of caregiving for a dementia patient: a short sense of competence questionnaire (SSCQ) suitable for clinical practice. J Am Geriatr Soc. 1999;47(2):256–7.CrossRef
26.
go back to reference Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist. 1980;20(6):649–55.PubMedCrossRef Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist. 1980;20(6):649–55.PubMedCrossRef
27.
go back to reference Beecham JK, Knapp MRJ. Costing psychiatric interventions. In Thornicroft G, Brewin C, Wing JK, Editors. Measuring mental health needs. London: Gaskell; 1992. 200–224. Beecham JK, Knapp MRJ. Costing psychiatric interventions. In Thornicroft G, Brewin C, Wing JK, Editors. Measuring mental health needs. London: Gaskell; 1992. 200–224.
28.
go back to reference Challis D, Davies B. Case Management in Community Care. Aldershot: Gower; 1986. Challis D, Davies B. Case Management in Community Care. Aldershot: Gower; 1986.
30.
go back to reference De Witt L, Ploeg J. Critical appraisal of rigour in interpretive phenomenological nursing research. J Adv Nurs. 2006;55(2):215–29.PubMedCrossRef De Witt L, Ploeg J. Critical appraisal of rigour in interpretive phenomenological nursing research. J Adv Nurs. 2006;55(2):215–29.PubMedCrossRef
31.
go back to reference Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.CrossRef Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.CrossRef
32.
go back to reference Ritchie J, Lewis J, McNaughton Nicholas C, Ormston R, editors. Qualitative research practice: a guide for social science students and researchers. London: Sage; 2014. Ritchie J, Lewis J, McNaughton Nicholas C, Ormston R, editors. Qualitative research practice: a guide for social science students and researchers. London: Sage; 2014.
33.
go back to reference Flick U, Gibbs G. Analysing qualitative data. London: Sage Publications; 2007. Flick U, Gibbs G. Analysing qualitative data. London: Sage Publications; 2007.
34.
go back to reference Clarkson P, Hughes J, Xie C, Larbey M, Roe B, Giebel CM, Jolley D, Challis D. HoSt-D (home support in Dementia) Programme management group. Overview of systematic reviews: effective home support in dementia care, components and impacts—stage 1, psychosocial interventions for dementia. J Adv Nurs. 2017;73(12):2845–63.PubMedCrossRef Clarkson P, Hughes J, Xie C, Larbey M, Roe B, Giebel CM, Jolley D, Challis D. HoSt-D (home support in Dementia) Programme management group. Overview of systematic reviews: effective home support in dementia care, components and impacts—stage 1, psychosocial interventions for dementia. J Adv Nurs. 2017;73(12):2845–63.PubMedCrossRef
36.
go back to reference Schoenmakers B, Buntinx F, Delepeleire J. Factors determining the impact of care-giving on caregivers of elderly patients with dementia. A systematic literature review. Maturitas. 2010;66(2):191–200.PubMedCrossRef Schoenmakers B, Buntinx F, Delepeleire J. Factors determining the impact of care-giving on caregivers of elderly patients with dementia. A systematic literature review. Maturitas. 2010;66(2):191–200.PubMedCrossRef
37.
go back to reference Shenton AK. Strategies for ensuring trustworthiness in qualitative research projects. Educ Inf. 2004;22(2):63–75. Shenton AK. Strategies for ensuring trustworthiness in qualitative research projects. Educ Inf. 2004;22(2):63–75.
38.
go back to reference Giebel C, Roe B, Hodgson A, Britt D, Clarkson P, HoST-D (Home Support in Dementia) Programme Management Group and Patient Public and Carer Involvement Groups. Effective public involvement in the HoST-D Programme for dementia home care support: From proposal and design to methods of data collection (innovative practice). Dementia. 2017. https://doi.org/10.1177/1471301216687698. Giebel C, Roe B, Hodgson A, Britt D, Clarkson P, HoST-D (Home Support in Dementia) Programme Management Group and Patient Public and Carer Involvement Groups. Effective public involvement in the HoST-D Programme for dementia home care support: From proposal and design to methods of data collection (innovative practice). Dementia. 2017. https://​doi.​org/​10.​1177/​1471301216687698​.
39.
go back to reference Edvardsson D, Fetherstonhaugh D, Nay R. Promoting a continuation of self and normality: person-centred care as described by people with dementia, their family members and aged care staff. J Clin Nurs. 2010;19(17–18):2611–8.PubMedCrossRef Edvardsson D, Fetherstonhaugh D, Nay R. Promoting a continuation of self and normality: person-centred care as described by people with dementia, their family members and aged care staff. J Clin Nurs. 2010;19(17–18):2611–8.PubMedCrossRef
40.
go back to reference Higgs P, Gilleard C. Rethinking old age: Theorising the fourth age. London and New York: Macmillan International Higher Education; 2015.CrossRef Higgs P, Gilleard C. Rethinking old age: Theorising the fourth age. London and New York: Macmillan International Higher Education; 2015.CrossRef
41.
go back to reference Bandura A. Guide for constructing self-efficacy scales. Self Efficacy Beliefs Adolesc. 2006;5(1):307–37. Bandura A. Guide for constructing self-efficacy scales. Self Efficacy Beliefs Adolesc. 2006;5(1):307–37.
42.
go back to reference Semiatin AM, O’Connor MK. The relationship between self-efficacy and positive aspects of caregiving in Alzheimer's disease caregivers. Aging Ment Health. 2012;16(6):683–8.PubMedCrossRef Semiatin AM, O’Connor MK. The relationship between self-efficacy and positive aspects of caregiving in Alzheimer's disease caregivers. Aging Ment Health. 2012;16(6):683–8.PubMedCrossRef
43.
go back to reference Contador I, Fernández-Calvo B, Palenzuela DL, Miguéis S, Ramos F. Prediction of burden in family caregivers of patients with dementia: a perspective of optimism based on generalized expectancies of control. Aging Ment Health. 2012;16(6):675–82.PubMedCrossRef Contador I, Fernández-Calvo B, Palenzuela DL, Miguéis S, Ramos F. Prediction of burden in family caregivers of patients with dementia: a perspective of optimism based on generalized expectancies of control. Aging Ment Health. 2012;16(6):675–82.PubMedCrossRef
44.
go back to reference Crellin NE, Orrell M, McDermott O, Charlesworth G. Self-efficacy and health-related quality of life in family carers of people with dementia: a systematic review. Aging Ment Health. 2014;18(8):954–69.PubMedPubMedCentralCrossRef Crellin NE, Orrell M, McDermott O, Charlesworth G. Self-efficacy and health-related quality of life in family carers of people with dementia: a systematic review. Aging Ment Health. 2014;18(8):954–69.PubMedPubMedCentralCrossRef
45.
go back to reference Gilliam CM, Steffen AM. The relationship between caregiving self-efficacy and depressive symptoms in dementia family caregivers. Aging Ment Health. 2006;10(2):79–86.PubMedCrossRef Gilliam CM, Steffen AM. The relationship between caregiving self-efficacy and depressive symptoms in dementia family caregivers. Aging Ment Health. 2006;10(2):79–86.PubMedCrossRef
46.
go back to reference Carbonneau H, Caron C, Desrosiers J. Development of a conceptual framework of positive aspects of caregiving in dementia. Dementia. 2010;9(3):327–53.CrossRef Carbonneau H, Caron C, Desrosiers J. Development of a conceptual framework of positive aspects of caregiving in dementia. Dementia. 2010;9(3):327–53.CrossRef
47.
go back to reference Stephan A, Möhler R, Renom-Guiteras A, Meyer G. Successful collaboration in dementia care from the perspectives of healthcare professionals and informal carers in Germany: results from a focus group study. BMC Health Serv Res. 2015;15(1):208.PubMedPubMedCentralCrossRef Stephan A, Möhler R, Renom-Guiteras A, Meyer G. Successful collaboration in dementia care from the perspectives of healthcare professionals and informal carers in Germany: results from a focus group study. BMC Health Serv Res. 2015;15(1):208.PubMedPubMedCentralCrossRef
48.
go back to reference Wittenberg Y, Kwekkeboom R, Staaks J, Verhoeff A, Boer A. Informal caregivers’ views on the division of responsibilities between themselves and professionals: a scoping review. Health Soc Care Community. 2018;26(4):e460–73.PubMedCrossRef Wittenberg Y, Kwekkeboom R, Staaks J, Verhoeff A, Boer A. Informal caregivers’ views on the division of responsibilities between themselves and professionals: a scoping review. Health Soc Care Community. 2018;26(4):e460–73.PubMedCrossRef
50.
go back to reference Hampson C, Morris K. Research into the experience of dementia: methodological and ethical challenges. J Soc Sci Humanit. 2018;1(1):15–9. Hampson C, Morris K. Research into the experience of dementia: methodological and ethical challenges. J Soc Sci Humanit. 2018;1(1):15–9.
51.
go back to reference McKillop J, Wilkinson H. Make it easy on yourself! Advice to researchers from someone with dementia on being interviewed. Dementia. 2004;3(2):117–25.CrossRef McKillop J, Wilkinson H. Make it easy on yourself! Advice to researchers from someone with dementia on being interviewed. Dementia. 2004;3(2):117–25.CrossRef
52.
go back to reference Robinson L, Gemski A, Abley C, Bond J, Keady J, Campbell S, Samsi K, Manthorpe J. The transition to dementia–individual and family experiences of receiving a diagnosis: a review. Int Psychogeriatr. 2011;23(7):1026–43.PubMedCrossRef Robinson L, Gemski A, Abley C, Bond J, Keady J, Campbell S, Samsi K, Manthorpe J. The transition to dementia–individual and family experiences of receiving a diagnosis: a review. Int Psychogeriatr. 2011;23(7):1026–43.PubMedCrossRef
53.
go back to reference Johnson RB, Onwuegbuzie AJ, Turner LA. Toward a definition of mixed methods research. J Mixed Methods Res. 2007;1(2):112–33.CrossRef Johnson RB, Onwuegbuzie AJ, Turner LA. Toward a definition of mixed methods research. J Mixed Methods Res. 2007;1(2):112–33.CrossRef
54.
go back to reference Moyle W. Is quality of life being compromised in people with dementia in long-term care? Int J Older People Nursing. 2010;5(3):245–52.CrossRef Moyle W. Is quality of life being compromised in people with dementia in long-term care? Int J Older People Nursing. 2010;5(3):245–52.CrossRef
55.
go back to reference Pritchard E, Dewing J. A multi-method evaluation of an independent dementia care service and its approach. Aging Ment Health. 2001;5(1):63–72.PubMedCrossRef Pritchard E, Dewing J. A multi-method evaluation of an independent dementia care service and its approach. Aging Ment Health. 2001;5(1):63–72.PubMedCrossRef
Metadata
Title
Applying a new concept of embedding qualitative research: an example from a quantitative study of carers of people in later stage dementia
Authors
Michele Abendstern
Karen Davies
Helen Chester
Paul Clarkson
Jane Hughes
Caroline Sutcliffe
Fiona Poland
David Challis
Publication date
01-12-2019
Publisher
BioMed Central
Keywords
Dementia
Dementia
Published in
BMC Geriatrics / Issue 1/2019
Electronic ISSN: 1471-2318
DOI
https://doi.org/10.1186/s12877-019-1240-x

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