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Participant experiences of an online intervention and randomised control trial Dr Daniel Todkill Professor John Powell
Contents Aim Context Methods Results Summary
Aim To understand participants’ experiences of and motivations for participating in an intervention and trial delivered solely online
Context Explored motivations to enrol and persist in PSYWELLRCT 3070 participants, self-recruited through NHS Choices website Intervention advertised to potentially increase ‘mental wellbeing’
PSYWELLRCT Waiting list control and intervention groups High attrition rates...1529 (49.8%) completed final follow up, attrition 73% in intervention arm, 26% in control arm Primary outcome measured using WEMWBS Despite high attrition, results are promising
Qualitative Study - Recruitment At end of trial, participants in intervention arm were invited to participate. Those  who consented, were stratified by age and gender Purposive, not representative sample Researchers blinded to participants’ trial results and characteristics, other than age group and gender
Procedure All interviews followed semi-structured interview guide One interviewer conducted all interviews over telephone
Procedure All interviews audio-recorded & transcribed Framework Approach used to identify themes and subthemes Identified, charted, indexed and interpreted themes and subthemes
Results 80 participants in intervention arm consented to contact for qualitative interview 60 participants contacted 14 males indicated consent, all contacted 2 males & 18 females provided consent and were able to be interviewed.   Ages varied from 20 to 64
KEY THEME 1; Motivations  of Users
KEY THEME 1 –  MOTIVATION 16 users were experiencing (n = 14) or had experienced (n = 2) periods of low mood & wanted MOODGYM to help them through or understand own emotions 	Low mood had wide range of aetiology...bereavement, physical or mental illness, stressful periods at work or unemployment
KEY THEME 1 –  MOTIVATION “I think for me it was at a very vulnerable time and it seemed like something that could help me to pull me out of where I was, which it did do”				 Interviewee 12 (female 45-49)
KEY THEME 1 –  MOTIVATION Theme throughout interviews was that the PSYWELLtrial advert appeared at... “the right place at the right time 			really”			 Interviewee 10 (female 40-44)
KEY THEME 2; BENEFITS OF INTERNET AS A MODE OF INTERVENTION
BENEFITS DESCRIBED:
BENEFITS & PROBLEMS DISCUSSED:
PRIVACY “.... the fact that you could do the whole thing without anybody knowing, basically, anybody knowing about me and where I was and what I was doing was actually quite reassuring”	 Interviewee 18 Female 55-59
24 HOUR AVAILABILITY “It was great because I could do it whenever I wanted to.  If I got up at two o'clock in the morning, I could sit and do it.  I didn't have to make an appointment with anybody so it was really good from that point of view.” Interviewee 8 Female 20-24
SELF EFFICACY “I think it is that feeling that it was something I was doing rather than something that was being done to me, if that makes sense.  Rather than going back to the doctor’s surgery and asking for help I felt that I was taking part in something, that I had an element of participation in it, that I was doing something to help myself get better“ Interviewee 5 Female 55-59
RATHER THAN FACE TO FACE ....I wouldn’t have gone to my Doctor and said to him about how I was feeling, because I didn't think it was the right level of problem.  I wasn’t sure how I was feeling I suppose, so I think it was a good way for me to have a bit of a tinker and see how I was feeling and see what help was I guess.” Interviewee 13 Female 55-59
KEY THEME 3; BEHAVIOUR CHANGE AS A RESULT OF THE INTERVENTION
KEY THEME 3 –  BEHAVIOUR CHANGE 17/20 were positive & provided examples of how thinking or behaviour changed 1/20 found short term benefits lasting few days, then no further 2 interviewees had negative opinion of intervention
KEY THEME 3 –  BEHAVIOUR CHANGE 15 described changed reflections on own thoughts & patterns of thinking 10 described positive changes in way participant relates to others 9 described other examples of changed external behaviours
CHANGED PATTERNS OF THINKING “I think it helps people to look at the way they think and what effect that has on the way they feel and the way they act...” Interviewee 1 Female 50-54
POSITIVE CHANGES IN RELATIONSHIPS WITH OTHERS “...more likely to try and sort of... step back from a situation, and think well am I thinking about this is the right way”				Interviewee 5 Female 55-59
EXTERNAL BEHAVIOUR CHANGE – CASE STUDY Pre intervention –anxiety caused her to take “two hours in the morning to feel ready to go outside” and “if I didn’t do that routine, I thought my day was going to go badly.”  Post intervention - “I can leave the house within half an hour now which is as soon as I have had my breakfast” Interviewee 16 Female 25-29
EXTERNAL BEHAVIOUR CHANGE – CASE STUDY “It gave me the confidence and made me realise that I wasn’t the only person suffering from anxiety. Everyone suffers from it sometimes, and it taught me a way of dealing with it, that it doesn’t matter. That it is perfectly normal and I can deal with it, it’s not going to try and eat me up during the day. So I can just get on with life rather than letting the anxiety control me”  Interviewee 16 Female 25-29
KEY THEME 4; BRANDING OF THE TOOL & TRIAL
KEY THEME 4 –  BRANDING OF THE TOOL & TRIAL Participants upload intimate details of their emotional states... Asked about reasons the felt secure in providing information Most common response (n=8) was branding
KEY THEME 4 –  BRANDING OF THE TOOL & TRIAL “I mean obviously with it being from a University, that’s always useful, rather than, shall I call it a private organisation, you know, it didn’t feel as if anybody was trying to make any money out of it.”
KEY THEME 5; LANGUAGE OF THE INTERVENTION
KEY THEME 5 –  LANGUAGE OF THE INTERVENTION 8 described how the intervention was aimed at younger people, even the youngest	participant described this Multiple  negative comments on perceived ‘Americanisation’ of tool, thought not designed for a UK audience (n=7)
DESIGNED FOR A YOUNGER AGE GROUP “I felt I am at the upper age of the target group for the website.  It struck me as maybe being more suitable for teenagers and people in their very early 20s” Interviewee Female 20-24
DESIGNED FOR AN AMERICAN AUDIENCE “I just thought this is straight out of an American teenage magazine”  Interviewee Female 50-55 	“the Americanisations weren’t relevant.  It was almost as if... well can’t they bother to even make it  anglicised and think about it from a UK point of view?” Interviewee Female 20-24
LIMITATIONS Small Sample Despite purposive sampling, mainly female, middle aged responders Likely to be biased towards those who have had positive experiences Need to address converse...i.e...those that left trial
SUMMARY Users of online interventions will have specific needs for intervention, but may not seek traditional forms of help Users perceive privacy, lack of transport and 24/7 availability as main benefits of internet as a mode of delivery Possible to provide benefit & change behaviour with solely internet based intervention
SUMMARY 4.   Branding by organisations perceived as trustworthy important for engagement 5.   Important to tailor language to age and local population
ACKNOWLEDGEMENTS

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6-005-1100-Todkill

  • 1. Participant experiences of an online intervention and randomised control trial Dr Daniel Todkill Professor John Powell
  • 2. Contents Aim Context Methods Results Summary
  • 3. Aim To understand participants’ experiences of and motivations for participating in an intervention and trial delivered solely online
  • 4. Context Explored motivations to enrol and persist in PSYWELLRCT 3070 participants, self-recruited through NHS Choices website Intervention advertised to potentially increase ‘mental wellbeing’
  • 5.
  • 6.
  • 7.
  • 8. PSYWELLRCT Waiting list control and intervention groups High attrition rates...1529 (49.8%) completed final follow up, attrition 73% in intervention arm, 26% in control arm Primary outcome measured using WEMWBS Despite high attrition, results are promising
  • 9. Qualitative Study - Recruitment At end of trial, participants in intervention arm were invited to participate. Those who consented, were stratified by age and gender Purposive, not representative sample Researchers blinded to participants’ trial results and characteristics, other than age group and gender
  • 10. Procedure All interviews followed semi-structured interview guide One interviewer conducted all interviews over telephone
  • 11. Procedure All interviews audio-recorded & transcribed Framework Approach used to identify themes and subthemes Identified, charted, indexed and interpreted themes and subthemes
  • 12. Results 80 participants in intervention arm consented to contact for qualitative interview 60 participants contacted 14 males indicated consent, all contacted 2 males & 18 females provided consent and were able to be interviewed. Ages varied from 20 to 64
  • 13.
  • 14. KEY THEME 1; Motivations of Users
  • 15. KEY THEME 1 – MOTIVATION 16 users were experiencing (n = 14) or had experienced (n = 2) periods of low mood & wanted MOODGYM to help them through or understand own emotions Low mood had wide range of aetiology...bereavement, physical or mental illness, stressful periods at work or unemployment
  • 16. KEY THEME 1 – MOTIVATION “I think for me it was at a very vulnerable time and it seemed like something that could help me to pull me out of where I was, which it did do” Interviewee 12 (female 45-49)
  • 17. KEY THEME 1 – MOTIVATION Theme throughout interviews was that the PSYWELLtrial advert appeared at... “the right place at the right time really” Interviewee 10 (female 40-44)
  • 18. KEY THEME 2; BENEFITS OF INTERNET AS A MODE OF INTERVENTION
  • 20. BENEFITS & PROBLEMS DISCUSSED:
  • 21. PRIVACY “.... the fact that you could do the whole thing without anybody knowing, basically, anybody knowing about me and where I was and what I was doing was actually quite reassuring” Interviewee 18 Female 55-59
  • 22. 24 HOUR AVAILABILITY “It was great because I could do it whenever I wanted to. If I got up at two o'clock in the morning, I could sit and do it. I didn't have to make an appointment with anybody so it was really good from that point of view.” Interviewee 8 Female 20-24
  • 23. SELF EFFICACY “I think it is that feeling that it was something I was doing rather than something that was being done to me, if that makes sense. Rather than going back to the doctor’s surgery and asking for help I felt that I was taking part in something, that I had an element of participation in it, that I was doing something to help myself get better“ Interviewee 5 Female 55-59
  • 24. RATHER THAN FACE TO FACE ....I wouldn’t have gone to my Doctor and said to him about how I was feeling, because I didn't think it was the right level of problem. I wasn’t sure how I was feeling I suppose, so I think it was a good way for me to have a bit of a tinker and see how I was feeling and see what help was I guess.” Interviewee 13 Female 55-59
  • 25. KEY THEME 3; BEHAVIOUR CHANGE AS A RESULT OF THE INTERVENTION
  • 26. KEY THEME 3 – BEHAVIOUR CHANGE 17/20 were positive & provided examples of how thinking or behaviour changed 1/20 found short term benefits lasting few days, then no further 2 interviewees had negative opinion of intervention
  • 27. KEY THEME 3 – BEHAVIOUR CHANGE 15 described changed reflections on own thoughts & patterns of thinking 10 described positive changes in way participant relates to others 9 described other examples of changed external behaviours
  • 28. CHANGED PATTERNS OF THINKING “I think it helps people to look at the way they think and what effect that has on the way they feel and the way they act...” Interviewee 1 Female 50-54
  • 29. POSITIVE CHANGES IN RELATIONSHIPS WITH OTHERS “...more likely to try and sort of... step back from a situation, and think well am I thinking about this is the right way” Interviewee 5 Female 55-59
  • 30. EXTERNAL BEHAVIOUR CHANGE – CASE STUDY Pre intervention –anxiety caused her to take “two hours in the morning to feel ready to go outside” and “if I didn’t do that routine, I thought my day was going to go badly.” Post intervention - “I can leave the house within half an hour now which is as soon as I have had my breakfast” Interviewee 16 Female 25-29
  • 31. EXTERNAL BEHAVIOUR CHANGE – CASE STUDY “It gave me the confidence and made me realise that I wasn’t the only person suffering from anxiety. Everyone suffers from it sometimes, and it taught me a way of dealing with it, that it doesn’t matter. That it is perfectly normal and I can deal with it, it’s not going to try and eat me up during the day. So I can just get on with life rather than letting the anxiety control me” Interviewee 16 Female 25-29
  • 32. KEY THEME 4; BRANDING OF THE TOOL & TRIAL
  • 33. KEY THEME 4 – BRANDING OF THE TOOL & TRIAL Participants upload intimate details of their emotional states... Asked about reasons the felt secure in providing information Most common response (n=8) was branding
  • 34.
  • 35. KEY THEME 4 – BRANDING OF THE TOOL & TRIAL “I mean obviously with it being from a University, that’s always useful, rather than, shall I call it a private organisation, you know, it didn’t feel as if anybody was trying to make any money out of it.”
  • 36. KEY THEME 5; LANGUAGE OF THE INTERVENTION
  • 37. KEY THEME 5 – LANGUAGE OF THE INTERVENTION 8 described how the intervention was aimed at younger people, even the youngest participant described this Multiple negative comments on perceived ‘Americanisation’ of tool, thought not designed for a UK audience (n=7)
  • 38. DESIGNED FOR A YOUNGER AGE GROUP “I felt I am at the upper age of the target group for the website. It struck me as maybe being more suitable for teenagers and people in their very early 20s” Interviewee Female 20-24
  • 39. DESIGNED FOR AN AMERICAN AUDIENCE “I just thought this is straight out of an American teenage magazine” Interviewee Female 50-55 “the Americanisations weren’t relevant. It was almost as if... well can’t they bother to even make it anglicised and think about it from a UK point of view?” Interviewee Female 20-24
  • 40. LIMITATIONS Small Sample Despite purposive sampling, mainly female, middle aged responders Likely to be biased towards those who have had positive experiences Need to address converse...i.e...those that left trial
  • 41. SUMMARY Users of online interventions will have specific needs for intervention, but may not seek traditional forms of help Users perceive privacy, lack of transport and 24/7 availability as main benefits of internet as a mode of delivery Possible to provide benefit & change behaviour with solely internet based intervention
  • 42. SUMMARY 4. Branding by organisations perceived as trustworthy important for engagement 5. Important to tailor language to age and local population

Editor's Notes

  1. NHS Choices is the UK’s biggest health website.Averages between 8-9million visitors per monthTrial was advertised on Live WellCo-author of this presentation and trial is medical director.
  2. Australian developed intervention - MoodGYM (www.moodgym.anu.edu.au) consists of five interactive modules over five weeks, and demonstrates CBT principles. Effective in depression, first time used to improve mental health wellbeing
  3. The concept of mental well being has recieved a lot of media coverage in the UK, with the government introducing and developing a ‘wellbeing index’.Although self-directed internet interventions are known to have low rates of adherence,17 this is less of a problem in wellbeing promotion for the general population than for the treatment of mental illness since it does not raise ethical questions of inadequacy of treatment for a diagnosed health problem. Moreover, as a mental health promotion tool, the intervention can be delivered at very low marginal cost using minimal personnel resources so that it can be made freely available to all who wish to use it, in contrast to a therapist contact approach which would be neither feasible nor affordable, for all.
  4. The first key theme that came through was what made them sign up to an online trial? It was clear that users will have specific needs of an intervention, but are different to the type who would access traditional forms of help