Table 4

Presentation of qualitative findings (all names have been changed to ensure confidentiality)

ThemeParticipantExample quote
Support in the communityAnn, 72-year-old wife of Stephen who had advanced NSIP“I was bit nervous before hand you didn't have anyone to turn to really…..we have one son in xxxx but he's far away and (2) I have a sister in xxxx which phones me up every day but [coughs] otherwise that's I felt alon:::e”“and how do you feel now?” (SB)“I feel better……. ‘cause I have all the phone numbers and people phone me up….”
Individual care plans and practical problems addressedCommunity palliative care CNS“[the H2H CNS] contacted us afterwards to check everything we had said we were going to do we'd done which we had erm::: and we had her number to be able to contact if he had any problems as well so::: erm it went all quite smoothly really…”
Coordination of care and efficiencyGP“if it wasn't for this (2) I can see a completely different scenario where this guy would be lost in the community ….he::: would be trying to find out who::: the respiratory nurse is [laughs] trying to get out who's the oxygen supplier trying to find out from his GP which one's going to be in charge of his care in the general practice which one's going to be helping him with his symptoms (1) you know it it would have become a hug:::e hassle and I don't think he::: realises how lucky he is actually to be part of this trial (2) because everything's there for him (2) there's no other issue…”
Crisis managementPeter, 63-year-old with advanced IPF“and now I've got all erm (2) they as I say they phone and I've got er a whole list of numbers that I can phone any time day or night erm if I need to, you know….oh yes yeah and (1) and (2) as I say I've got erm the telephone numbers… of of people that I can phone erm 24 seven which is ideal I mean before that erm the most I could do was dial 999”
Palliative care, psychological supportTed, 55-year-old patient with advanced IPF“I must say to everybody (2) definitely it is it it's (2) I don't know how long I've got left but (2) whatever time I've got left (3) this palliative care is going to make that time better for me and it's better and if it's better for me it's better (2) for us as a family….I've been telling everybody (2) how important (3) you know I just wish I could get GPs in to buy into the (2) palliative care cause its makes such a difference (2) made such a difference to me…… I have weeks when (2) er like last week I wanted to talk about (3) you know (2) my illness and stuff…and they're there then (2) for me to be able to tap into.. which I am happy for because (3) when you're in in my my sort of position when you know your life limited (1) is your life is limited often at home (3) you tend you live a lie say to people you live a lie I think because say how do you feel you just say I feel fine but because you don't want to be worrying people all the time but (1) when you've got a palliative care team round you you can get that out of your system which is something we didn't have for the first 18 months two years of this disease”
Symptom controlILD Consultant“We would star:::t er symptom control in hospital whether that was a little bit of Oramor:::ph or lorazep:::am and then it was really we wouldn't often see the patient for another 3 or 4 months time and it was then back to the GPs han:::ds to sort of titrate and change that as needed um and it it didn't always go successfully the things weren't re-prescrib:::ed or wrong doses were given but knowing that er (1) you and your team are now doing that again we've had patients say that it's been very useful for them to have sort of continuity of care and someone taking overall view of that….”
Empowering HPILD CNS“It’s certainly enhanced my practice, um, certainly there's an huge (1) element of my job which is dealing with um the palliative care and end of life of patients, and I think, seeing how palliative care interact with patients and bring up (1) uncomfortable::: (2) subjects for us as healthcare professionals, certainly has enhanced my practice….We need to::: (1) understand that these aren't necessarily subjects that patients don't want to discuss…sometimes some of the anxiety around the issues can be discussing what the future is, discussing, (1) you know, having those uncomfortable conversations. I think, H2H has facilitated that, helped patients be more organised and think around what they're doing and also highlighted to us how to go about those conversations, and that those conversations are (1) ok to have.”
Advance care planningLeslie, 54-year-old wife of Ted who had advanced IPF“For us it was a bit traumatic you know everything being coming to life that actually these things are happening I think you can go to hospital appointments and still sort of brush it aside that you know [laughs] erm (2) but once everybody was sat round the table and we talked about DNRs …and erm (4) advanced directives and all this sort of stuff it did bring it home and it did get a little bit (3) upsetting but (3) I I still do believe that it was better at that point than when (1) somebody's actual laid on their bed and you think it could be any da:::y and (2) erm (1) you know I think you can deal with it better at that stage”
  • CNS, Clinical nurse specialist; DNR, Do not resuscitate; GP, General practitioner; H2H, Hospital2Home; HP, Health professional; ILD, interstitial lung disease; IPF, idiopathic pulmonary fibrosis; NSIP, Non-specific interstitial pneumonia.