Table 4 Typology of Fidelity and Tailoring: Longitudinal data

Good fidelity

Mary

Facilitator Baseline notes: “Realises that she is not exercising much but is active all day. Would like to walk but is limited by [vaginal] prolapse, limited by backache (osteopenia) and osteoarthritis … Occasional walk around shopping centre or park with daughter. Nervous to go alone. (daughters) very supportive and keen to understand and help” (Facilitator 1, initial contact sheet)

Facilitator baseline assessment:

Facilitator: Is there anything else at the moment that you want to talk about to do with your heart condition?

Mary: when they say like with the heart is weak or heart failure part I mean, that, what is, that means the heart is weaker?

Facilitator: yes the heart muscle it has been damaged…or become stretched you know and isn’t, when the muscles contract, whether it’s your arm muscle or your leg muscle or your heart muscle, it sort of contracts and squeezes…yes that’s right and it’s not squeezing quite as much as it should do, so not quite so much blood is actually getting circulated each time. So the reason why you get breathless is because your heart is not pumping enough blood and oxygen around the body. So your breathing is a sort of automatic reaction for it…. (Facilitator 1 Initial assessment)

Patient interview at 4 months:

“when [facilitator] was there she never rushed us, we’d go through things steadily page by page on the book I was writing on…Progress Tracker....she spent the time and she explained things and I found it very good. She also just let me chat about what benefits I was finding from it” (Mary 4 month interview)

Patient interview at 12 months:

“the knowledge I gained from [facilitator], the information, the questions that I asked right at the beginning…were probably some of the most important ones….she was able to not just answer it but explain it as well…I’m a person that is, if you want to tell me something, tell me so that I can understand it…but if it’s also written down, I can also get more knowledge…often more than just talking about it, ‘cos you take it in just a bit at a time” (Mary 12 month interview)

Facilitator mid-intervention contact sheet:

“Phoned to check on progress. However she was in bed with a very bad [urinary tract infection]. Seen by GP and on antibiotics. Told to drink plenty of water. She was unsure what to do as limited to 1 l [due to severity of HF]. Advised that the GP would know that she is restricted yet has advised the extra drinks to flush thro’ the infection. If she’s worried she should contact the GP or [HFCNS]…” (Facilitator 1, subsequent contact sheet)

Patient interview at 4 months:

“I have sometimes to draw my breath in because they [my daughters] smother me…the surgeon that put the stent in my heart… he told my daughters and my husband:” “I’ve only done one part, the rest of it is medication to help support your heart. Your heart is very, very weak… I never clocked that they were so worried” (Mary 4 month interview)

Patient interview at 12 months:

“I’m very pleased with how I’ve got on since I started this [programme]… as I was looking at life before then, that this is how I was going to be, spending most of my time in the chair, and looking at the place going:” “Oh I wish I could do this, I wish that I could do that, and now I don’t wish…there’s a total difference to me to what there was” (Mary 12 month interview)

John

Facilitator Baseline notes: “First home visit – introduction to the manual- Discussed patient’s understanding of HF manual and information given as to the purpose of my visits – History taken from patient – social support discussed. Issues around housing discussed…signposted to the manual” (Facilitator 2, initial contact sheet)

Facilitator final notes:

“Home circumstances big concern for [John], listened to [John]‘s concerns with landlord/electric/gas/rehousing. Awaiting rehousing [John] has all the relevant contact numbers... Discussed how I felt [John] had benefited from manual – better understanding of heart failure, medications, signs and symptoms etc.” (Facilitator 2, final contact sheet)

Patient interview at 4 months:

“I don’t think it put a lot of my mood in [Progress Tracker] I’d’ve put good every time...the biggest problem I’ve had is with the gas board. I did put shopping, hobbies as well...The biggest difference is when I’m going to move into this bungalow, I mean I’m a smoker, I have cut down a hell of a lot...It’s a no smoking area” [John, 4 month interview]

Poor fidelity

Helen

Facilitator initial contact: “How she was – emotional. Very anxious about condition. Scared she might die suddenly...Explored support from [local agency] and areas of manual to try techniques to relieve stressful symptoms...” (Facilitator 3, initial contact sheet)

Patient interview at 4 months:

“I was really getting very depressed...I’m just heaps better than before...And if it wasn’t for being on the [REACH-HF] study, I don’t think I’d be walking like I am now.” (Helen, 4 month interview)

“Interviewer: Did you show the manual to anybody else?Helen: No, I hid it in a drawer. I didn’t want the children to see it...and then I got to the CPR bit...I didn’t want the children to know that something could happen to me suddenly... when they were gone I’d take it out, because I had to remember to write my daily strides in it.” (Helen, 4 month interview)

Patient interview at 12 months:

“Interviewer: Have you gone back [to the manual]? Helen: No, I’m sorry, every time I pick up the manual I see the terminal bit of it, so I haven’t... when I read things like that...I tend to add a little bit, or read things into it. My brain goes: zoom, to the point of no return.” (Helen, 12 month interview)

By failing to increase her knowledge and understanding about HF, Helen learned by rote and was very proud of recording her 1900 steps a day in the Progress Tracker, which reflected the focus of the facilitated sessions:

Patient interview at 4 months:

“[Facilitator] said: it’ll build your heart muscle up... I wasn’t thinking that way, I was thinking: If I rest my heart and don’t do anything...keep me going a bit longer... And the more I thought about walking, and my heart muscle and all, the more, well, I thought: Well, I’ll walk and try and get stronger” (Helen, 4 month interview)

Facilitator final contact sheet:

“How’s she feeling – good about her heart. Worried about lung. Good days but more bad days. Previously not answering phone. Feeling a little brighter now...Weight decreased. Not eating. Discussed nutritional drinks from GP. Doesn’t want to contact GP. Not renewed prescription for Valium...Me to contact GP re: nutritional drinks and Valium” (Facilitator 3, final contact sheet)

Dorothy

Facilitator initial contact sheet:

“Introduction to REACH, myself and manuals. Discussion surrounding use of Progress Tracker, traffic light system and signs and symptoms....” (Facilitator 4, initial contact sheet)

Facilitator initial assessment:

Facilitator: and what did [Doctor] say about this scan?

Dorothy: he was (sighs) do you know what, I do find it confusing. He said something about 40%

F: OK

D: is that 40% not working or 40% working?

F: yes, OK

D: I’m not sure which way that went

F: Ok yeah, I’m not sure about whether it is 40% but if … my suspicions are if you say 40%, is that yes that it’s working (pause) at 40% of what’s expected, if that makes sense. (Facilitator 4 Initial assessment)

Patient interview at 4 months:

“Interviewer: Did you try the chair based exercises?”

Dorothy: I didn’t, not really. No I didn’t... Sorry [laughter]....I didn’t find it comfortable...

I didn’t tend to wear the [pedometer] and when it fell off, I didn’t seem to carry on with it...

Interviewer: Are you sort of writing things down anywhere, or monitoring?

Dorothy: Oh, now I’ve got to be honest: No I haven’t done, no....the manual tend to just flick through and just read different pages you land on …

“Interviewer: Was there anything that you didn’t like [about the facilitator], I’m sensing that you’re a little bit reserved?

Dorothy: Didn’t seem reliable...I just felt it wasn’t constant.” (Dorothy 4 month interview).

Patient interview at 12 months:

“I still can’t see myself as a priority...I can’t seem to get the seriousness of it...I seemed to think that because I was busy, I’m exercising but it’s not, it’s not the same thing really is it? I haven’t kept up [with the monitoring]...I did have a diary at first...No, have got a bit complacent...I don’t know what to look for really... my condition hasn’t changed...” (Dorothy 12 month interview)