Published September 9, 2021 | Version 2
Journal article Open

Assessing the generalisability of a multicentre qualitative dementia research: the experience and challenges faced by the MinD project in Europe

  • 1. Faculty of Education, Health and Wellbeing, University of Wolverhampton, Wolverhampton, WV1 1LY, UK
  • 2. Manchester School of Art, Manchester Metropolitan University, Manchester, UK
  • 3. INTRAS, Valladolid, Spain
  • 4. Faculty of Arts, Business and Social Sciences, University of Wolverhampton, Wolverhampton, UK
  • 5. University Hospital Carl Gustav Carus and Carl Gustav Carus Faculty of Medicine, Technical University of Dresden, Dresden, Germany
  • 6. Department of Design, Production and Management & Department of Communication Science, University of Twente, Enschede, The Netherlands
  • 7. Alexianer Krankenhaus Hedwigshoehe, St. Hedwig Kliniken, Berlin, Germany

Description

Background: Generalisation of findings is an important aspect of research and essential for evidence-based practice. While generalisation is common in quantitative research, there is a lack of generalisability in qualitative research. This paper presents the experience and challenges faced by the Designing for People with Dementia (MinD) project in meeting the requirements to strengthen the generalisation of findings on the lived experience of people living with dementia and their engagement to co-create designs to empower their everyday living.  

Methods: Polit and Beck (2010)'s strategies to generalise qualitative findings were applied: (1) replication in sampling; (2) replication of studies; (3) meta-synthesis of findings; (4) reflexivity and conceptualization; (5) immersion with the data; and (6) thick description.

Results: While it is possible to increase the generabilisabilty of qualitative evidence through the replication of the sampling to attain a large, heterogeneous sample in different and multiple contexts and environments; implementation of sound and robust research; conducting in-depth analysis and interpretation collaboratively for emergent themes; and meeting the thick description requirement, there are challenges that the project team faced in implementing some of the Polit and Beck's strategies because of the condition, namely dementia, that our participants are having. Other challenges faced were: the language and cultural diversity in the team; diverse  work and organisational procedures; and the inter-disciplinary differences relating to the methods of enquiry, approaches and techniques to conduct research. These challenges will need to be identified and addressed at the start of the project with a strong leadership to ensure a seamless journey to complete the project successfully. Trust between the researchers and participants, and time to build this trust are critical to recruitment and participation in the study; these factors are of utmost important in research involving participants with condition such as dementia.

Files

openreseurope-1-15224.pdf

Files (493.4 kB)

Name Size Download all
md5:0d7fa5698fe2367531d5e96acfad6599
493.4 kB Preview Download

Additional details

References

  • Ayres L, Kavanagh K, Knafl KA (2003). Within-case and across-case approaches to qualitative data analysis. Qual Health Res. doi:10.1177/1049732303013006008
  • Groleau D, Zelkowitz P, Cabral IE (2009). Enhancing generalizability: moving from an intimate to a political voice. Qual Health Res. doi:10.1177/1049732308329851
  • Thorne S (2008). Interpretive Description.
  • Sandelowski M (1997). "To be of use": enhancing the utility of qualitative research. Nurs Outlook. doi:10.1016/s0029-6554(97)90043-9
  • Yardley L (2008). Demonstrating validity in qualitative health research.
  • Green J, Thorogood N (2009). Qualitative methods for health research.
  • Lewis J, Ritchie J (2014). Generalizing from qualitative research.
  • Sparkes AC, Smith B (2014). Qualitative research methods in sport, exercise and health: from process to product.
  • Hayhurst LMC (2016). Sport for development and peace: a call for transnational, multi-sited, postcolonial feminist research. Qualitative Research in Sport, Exercise and Health. doi:10.1080/2159676X.2015.1056824
  • Darnell SC, Chawansky M, Marchesswault D (2018). The state of play: Critical sociological insights into recent 'Sport for Development and Peace' research. Int Rev Sociol Sport. doi:10.1177/1012690216646762
  • Greenhalgh T, Annandale E, Ashcroft R (2016). An open letter to editors on qualitative research. BMJ. doi:10.1136/bmj.i563
  • Firestone WA (1990). Accommodation: toward a paradigm-praxis dialectic.
  • Tracy SJ (2010). Qualitative quality: eight "Big-Tent" criteria for excellent qualitative research. Qualitative Inquiry. doi:10.1177/1077800410383121
  • Chenail RJ (2010). Getting specific about qualitative research generalizability. J Ethnogr Qual Res.
  • Ritchie J, Lewis J (2005). Qualitative research practice: a guide for social science students and researchers.
  • Davies D, Dodd J (2002). Qualitative research and the question of rigor. Qual Health Res. doi:10.1177/104973230201200211
  • Lincoln Y, Guba E (1985). Naturalistic Inquiry.
  • Seale C (1999). Quality in qualitative research. Qualitative Inquiry. doi:10.1177/107780049900500402
  • Noble H, Smith J (2015). Issues of validity in qualitative research. Evidence-based Nursing.
  • Polit DF, Beck CT (2010). Generalization in quantitative and qualitative research: myths and strategies. Int J Nurs Stud. doi:10.1016/j.ijnurstu.2010.06.004
  • Gheondea-Eladi A (2014). Is qualitative research generalizable?. Journal of Community Positive Practices.
  • Johnson JK, Barach P, Vernooij-Sassen M (2012). Conducting a multicentre and multinational qualitative study on patient transitions. BMJ Qual Saf. doi:10.1136/bmjqs-2012-001197
  • Dewing J (2002). From ritual to relationship: A person-centred approach to consent in qualitative research with older people who have a dementia. Dementia. doi:10.1177/147130120200100204
  • Mann J, Hung L (2019). Co-research with people with dementia for change. Action Research. doi:10.1177/1476750318787005
  • Mayrhofer AM, Mathie E, McKeown J (2020). Young Onset dementia: Public involvement in co-designing community-based support. Dementia (London). doi:10.1177/1471301218793463
  • Steeman E, de Casterle BD, Godderis J (2006). Living with early-stage dementia: a review of qualitative studies. J Adv Nurs. doi:10.1111/j.1365-2648.2006.03874.x
  • Tanner D (2012). Co-research with older people with dementia: experience and reflections. J Ment Health. doi:10.3109/09638237.2011.651658
  • Zeilig H, Tischler V, van der Byl Williams M (2019). Co-creativity, well-being and agency: A case study analysis of a co-creative arts group for people with dementia. J Aging Stud. doi:10.1016/j.jaging.2019.03.002
  • Greenwood N, Smith R (2016). The experiences of people with young-onset dementia: A meta-ethnographic review of the qualitative literature. Maturitas. doi:10.1016/j.maturitas.2016.07.019
  • Moyle W, Borbasi S, Wallis M (2011). Acute care management of older people with dementia: a qualitative perspective. J Clin Nurs. doi:10.1111/j.1365-2702.2010.03521.x
  • van Hoof J, Kort HSM, van Waarde H (2010). Environmental interventions and the design of homes for older adults with dementia: An overview. Am J Alzheimers Dis Other Demen. doi:10.1177/1533317509358885
  • (null). MinD - Designing for People with Dementia: Mindful self-empoverment and social engagement.
  • Oyebode JR, Parveen S (2019). Psychosocial interventions for people with dementia: An overview and commentary on recent developments. Dementia (London). doi:10.1177/1471301216656096
  • Scholzel-Dorenbos CJM, Meeuwse EJ, Olde Rikkert MGM (2010). Integrating unmet needs into dementia health-related quality of life research and care: Introduction of the Hierarchy Model of Needs in Dementia. Aging Ment Health. doi:10.1080/13607860903046495
  • Tong A, Sainsbury P, Craig J (2007). Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. doi:10.1093/intqhc/mzm042
  • Zanasi M, Ziebuhr B, Bueno Y (null). Feelings of usefulness and empowerment in people with dementia: a qualitative study.
  • Niedderer K, Holthoff-Detto V, van Rompay T (null). "This is Me": Evaluation of a boardgame to promote social engagement, wellbeing and agency in people with dementia through mindful life storytelling.
  • Sprague S, Matta JM, Bhandari M (2009). Multicenter Collaboration in observational research: improving generalizability and efficiency. J Bone Joint Surg Am. doi:10.2106/JBJS.H.01623
  • Chung KC, Song JW, WRIST Study Group (2010). A guide on organizing a multicentre clinical trial. Plast Reconstr Surg. doi:10.1097/PRS.0b013e3181df64fa
  • Kleiderman E, Boily A, Hasilo C (2018). Overcoming barriers to facilitate the regulation of multi-centre regenerative medicine clinical trials. Stem Cell Res Ther. doi:10.1186/s13287-018-1055-2
  • Lee RP, Hart RI, Watson RM (2014). Qualitative synthesis in practice: some pragmatics of meta-ethnography. Qual Res. doi:10.1177/1468794114524221
  • Lim JNW, Almeida R, Holthoff-Detto V (2019). What is Needed to Obtain Informed Consent and Monitor Capacity for a Successful Study involving People with Mild Dementia? Our experience in a multi-centre study.
  • Shadish W, Cook T, Campbell D (2002). Experimental and Quasi-Experimental Designs for Generalized Causal Inference.
  • Braun V, Clarke V (2006). Using thematic analysis in psychology. Qual Res Psychol. doi:10.1191/1478088706qp063oa
  • Maylind P (2015). Qualitative Content Analysis. Theoretical Foundation, Basic Procedures and Software Solution.
  • Kuckartz U (2014). Qualitative Text Analysis: A Guide to Methods, Practice & Using Software.
  • Bengtsson M (2016). How to plan and perform a qualitative study using content analysis. NursingPlus Open. doi:10.1016/j.npls.2016.01.001
  • Thomas J, Harden A (2008). Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol. doi:10.1186/1471-2288-8-45
  • Noblit GW, Hare RD (1988). Meta-ethnography: synthesizing qualitative studies.
  • (1992). The ICD-10 classification of mental and behavioural disorders : clinical descriptions and diagnostic guidelines.
  • Niedderer K, Harrison D, Gosling J (2020). Working with Experts with Experience: Charting Co-production and Co-design in the Development of HCI-Based Design. In HCI and Design in the Context of Dementia. doi:10.1007/978-3-030-32835-1_19
  • Niedderer K (2013). Explorative Materiality and Knowledge. The Role of Creative Exploration and Artefacts in Design Research. FormAkademisk. doi:10.7577/formakademisk.651
  • Nowell LS, Norris JM, White DE (2017). Thematic Analysis: Striving to meet the trustworthiness criteria. Int J Qual Methods. doi:10.1177/1609406917733847