Using focus groups to explore the views & experiences of people with dementia

1. Using focus groups to explore the views & experiences of people with dementia Claire Bamford

2. Aim of session • To explore key issues in using focus groups with people with dementia Educational objectives By the end of this sessionparticipants will:   • Understand when and why focus groups could be useful   • Be aware of practical issues in planning and setting up focus groups with people with dementia • Understand specific issues in facilitating focus groups with people with dementia

3. Background • Growing interest in exploring perspectives of people with dementia • One-to-one interviews are most commonly used method • Small number of studies have used focus groups

4. What are focus groups? “Focus groups are basically group interviews, although not in the sense of an alternation between a researcher’s questions and research participants’ responses. Instead the reliance is on interaction within the group, based on topics that are supplied by the researcher who typically takes the role of a moderator. The hallmark of focus groups is their explicit use of group interaction to produce data and insights that would be less accessible without the interaction found in a group” (Morgan 1997, p2)

5. Overview of recent research • Medline search using terms:focus group AND (dement$ OR alzheim$) • 107 articles retrieved between 1996 and 2010 • 9 reported on focus groups with people with dementia • 91 reported on focus groups with professionals and/or family carers • 4 did not use focus groups • 3 insufficient detail available

6. Examples of studies using focus groups • Values • Meaningful activity, outcomes, quality of life, person-centred care • Experiences of living with dementia • Attitudes to brain health, beliefs about driving in dementia, living with cognitive impairment • Views on interventions or technologies • Art gallery access programme, cognition-enhancing medication, people with dementia as spokespersons, technologies for self-care & independent living

7. Studies using focus groups with people with dementia • Poor reporting of methods (e.g. unclear how many participants in each group; no information on duration) • Limited discussion of methodological issues • Content of one group was ‘impoverished’ and not included in results, but no discussion of potential reasons for this

8. Learning from other groups for people with dementia • Well-being groups • Reality orientation • Reminiscence therapy • Validation therapy • Cognitive rehabilitation groups • Cognitive stimulation groups • Memory training groups • Therapy groups • Psychotherapy groups • CBT groups • Education & support groups (Scott & Clare 2003)

9. Practical issues • Recruitment of participants • Finding a venue • Scheduling the group(s) • Developing a topic guide • Running the group(s) • Capturing the data • Audio/video recording • Transcription • Debriefing and learning

10. Recruitment • Aim to hear perspective of person with dementia • BUT this may be facilitated by involving family carers or members of staff • Need to brief other members re the focus of the group & their role • Potential participants already meet as a group

11. Extract from mixed focus group Int So why did you change from one to the other? Pwd I don’t know Carer Well it was me that Pwd You wanted more. You wanted me out more time, out of your way, didn’t you? (laughing) Prof Sounds about right (laughing) Int Don’t beat about the bush Pwd Oh no, a spade’s a spade with me. (Bamford et al 2008)

12. Extract from discussion Int Did you enjoy your bath? P404 A mixture Int A mixture? P404 Yes, seemed to be too many people there and things like that S408 There was only me, I’m not that many people am I? P404 There seemed to be S408 I’m only one P404 quite a few there S408 No, there was me, just me. There was only me and you in the bathroom, unless there was someone there I didn’t see. I don’t think there was. (Bamford et al 2008)

13. Recruiting people with dementia • Small group of four to six best • Establish relationship beforehand • Telephone screening (with carer) • Face-to-face meeting • Find out how best to facilitate participation • Check for sensory impairment • Strategies for containing anxiety

14. Inclusion criteria • Share common experiences? • Need specific knowledge (e.g. diagnosis)? • Relatively intact communication skills • Understand purpose of the group, are interested & able to consent to take part • Appropriate in and enjoy social situations

15. Severity of cognitive impairment of focus group participants • MCI (n=2) • Early-stage AD (n=7) • Moderate dementia (n=2) • Severe dementia (n=2) • Not specified (n=5)

16. Impact of severity of cognitive impairment • MCI groups more able to engage in discussion than AD groups (Frank et al 2006) • People with moderate & severe dementia were able to talk about their quality of life (Byrne-Davis et al 2006) • Not always easy to understand the verbal content of residents with lower MMSE scores (Harmer & Orrell 2008) • Content of groups of people with dementia living in residential care was ‘impoverished’ (MacPherson et al 2009)

17. Finding a venue • Easy to get to • Familiar • Comfortable • Table • Free from distracting noise, clutter or visual stimuli • Toilets nearby • Security issues

18. Scheduling the groups • Decide on number of meetings • Decide on duration • Negotiate an appropriate time of day

19. Single focus group • Fewer resources needed • Less onerous for participants • Focused discussion

20. Series of focus groups • Members may be more forthcoming • Enables more ground to be covered • Allows for identification of recurrent themes • Allows range of experiences to be captured • Allows for respondent validation • Maximises learning for facilitators

21. Negotiating time of day • Tend to fit in around routines – either mid-morning or after lunch • If using established group, then easiest to fit into usual meeting slot to maximise continuity • Need to avoid scheduling with conflicting activities • Consider scheduling issues if holding a series of groups

22. Developing a topic guide • Open or closed questions? • People with word-finding difficulties may find it difficult to respond to open questions • Need to encourage a discursive approach • Maximise ‘immediacy’ of what is being discussed • Consider using prompts • Photographs • Vignettes / case studies

23. Facilitating focus groups • Need well-trained professionals • Use two facilitators • Training and/or experience in group work • Knowledge of dementia • Ongoing training and support • Debrief after each meeting • Deal with your own feelings & issues • Problem-solve & plan • Need to remain flexible & versatile • Sometimes what is planned does not work • Need to use trial & error (Morhardt & Sherrell 2003; Yale 1991)

24. Facilitator’s role • Create atmosphere in which participants feel comfortable & safe to express themselves • Establish norms for group interaction through educating and role-modelling appropriate behaviours • Foster interaction between participants • Monitor level of each individual’s participation • Keep meeting on track • Provide explanation & reassurance if any anxiety or confusion arises (Yale 1991)

25. Unique group process issues • Memory impairment • Communication deficits • Interactional issues • Between participants • Between facilitator & participants • Emotional reactions (Yale 1991)

26. Managing memory impairment • Avoid using the group to collect factual information • Refocus discussion if needed • Try to link tangential issues back to the main theme • Repetition/perseveration • Acknowledge the importance of the issue to the person with dementia • Try to respond differently each time (e.g. content, emotion or underlying meaning) • Use facilitators to ‘hold’ information for person with dementia • Use prompts (e.g. pictures; vignettes) (Morhardt & Sherrell 2003; Yale 1994)

27. Staff role in providing cues Prof3 well you’ve not been coming very long have you (pwd4) you’re relatively new to the group Pwd4 yes Prof3 and you were on the waiting list for quite a while, weren’t you? Pwd4 yes, yes (pause) yes Pwd1 now was it worth waiting for? Pwd4 to come here? (laughing) Pwd1 It was Pwd2 yes F1 was it worth waiting for? Pwd4 oh was it, yes, yes Pwd1 it was worth waiting for (Bamford et al 2008)

28. Refocusing discussion P101 look at that rabbit out there Int oh yes it’s only little, isn’t it? P101 it’s sweet Int it’s really sweet P101 looks really sweet, sorry Int no it’s fine (laughs) it is really sweet, I like little rabbits [yes] they’re really cute aren’t they? [yes] I didn’t used to like eating them, my mum used to cook them and we used to have rabbit stew. Did you? (unpublished data)

29. Managing communication deficits • Need a balance between letting participants attempt to express themselves & surmising what they are trying to say • Ask for permission to re-state what may not have been heard by group • Allow time for participants to formulate a response • Arrange seating to accommodate needs of participants with sensory impairments • Be aware of non-verbal cues • Respond to underlying feelings when you do not understand the words • Simplify your language & speak slowly, calmly & clearly (Morhardt & Sherrell 2003; Yale 1994)

30. Managing interactional issues • Between group members • Stay calm & in control • Use diversion, refocus or have a break • Look for the underlying reason for the behaviour • Between participants & facilitator(s) • Potential opportunity to explore possible unsaid feelings (Yale 1994)

31. Managing emotional reactions • Empathic response to loss, grief, fear & frustration • Validate & affirm feelings • Restate content to help member feel heard • Explore commonality of experience • Respond to humour • Helpful coping strategy • May distract from painful feelings • May want to encourage the person to express these to ensure s/he feels heard (Morhardt & Sherrell 2003)

32. Managing other problems • Wanting to go home • Engage in conversation • Check for physical discomfort • Reassure that s/he will be going home • Take for a short break or walk • False beliefs • Respond empathically to the underlying feeling or meaning (Yale 1994)

33. Debriefing & learning • Debrief with co-facilitators after each group • Use structured form or write unstructured notes to summarise key points re group process • Review transcripts, identify pivotal points, identify possible solutions

34. Example of structured form • Topics discussed • Who initiated by? • Group mood • Relationship of mood to themes • Group interactions • Turntaking • Interactions between members • Interactions between members & facilitator(s)

35. Structured form (continued) • Group facilitation • Role & techniques • Highlights • Problems & strengths • Miscellaneous • Seating patterns • General impressions/comments (Yale 1994)

36. Good luck! • If research question is right & you have recruited the right participants, then you are almost certain to collect some useful data • Have a go and learn from your mistakes • There’s no such thing as ‘the perfect focus group’

37. Further information Claire Bamford Senior Research Associate Institute of Health & Society Newcastle University Medical Sciences New Building Richardson Road Newcastle upon Tyne NE2 4AX Email: c.h.bamford@ncl.ac.uk Telephone: 0191 222 7047