Reciprocal translational synthesis: key components of home palliative care and illustrative quotes
| Third-order constructs | Second-order constructs | First-order constructs |
|---|---|---|
| Key components experiences | Illustrative quotes (Q) | |
| Presence | Availability 24/7 Someone trustable always available, leading to increase sense of security and less uncertainty | Q1. “When I just sat and said ‘I do not want to die, I do not want to die’, I got such intense death anxiety. Then it was so good to know that I could phone the palliative home care team, they would come here… and my husband could rest a little. That is security, it is peace, inside me. That they are there, if nothing else is to be found, they are there” (66-year-old woman with advanced cancer of unknown origin, study 13) Q2. “I know that I can get help. When something happens, pain or something, it's only a call and then they [palliative staff] come after fifteen or thirty minutes at most. … It really gives you a feeling of security… I compare that to the year I had to go to the emergency department…This is heaven… It is like being rich…” (35-year-old man with generalised malignancy, study 13) Q3. “My husband could remain at home during the whole disease process, sleep in his own bed, spend time with the children, grandchildren, and friends (as long as he still had the strength), knowing all the while that doctors and other staff members were accessible 24 hours a day. This gave us security, and it was a privilege to have this arrangement during a difficult time” (caregiver, study 16) Q4. “As soon as you call, you've got somebody. Within 20min we had an answer when I called about the pain med. I said that my aunt was having pain, and the Percodan wasn't getting it. The nurse said, “OK. That's OK because we can do something about that.” I really think it's a plus if there's somebody there all the time, because even if you don't need something, I know that it's there and that makes a big difference. If I hadn't known there was somebody there, I might have panicked. Just knowing that was a real big help. She called all the time asking if we needed this or needed that. I definitely needed that kind of support.” (40-year-old niece, study 11) |
| Home visits Security and relief through sharing responsibility of caregiving with trustable staff | Q5. “The healthcare team supports, gives him intravenous drip and the nurses are there for us!; The nurse asked for a place in the bathroom to put the equipment box, a big black carrier that was locked. It got its own place in the bathroom upstairs, beside my son's bedroom […]” (caregiver of cancer patient, study 9) Q6. “When they (the team) are here it's such a relief, I don't feel like crying all the time, at least that's how I feel” (caregiver, study 1) Q7. “When [the doctor] came out to the house to see her, I really think that made her feel better, and I know it made me feel better.” (caregiver 5, study 8) Q8. “If there was a problem like pain, shortness of breath, or if some aid were needed to facilitate the care, the team arranged things: a morphine pump, an oxygen tank, a commode, and so on.” (caregiver, study 16) Q9. “You don't know when it's coming close [husband's death]… And that gives you a feeling of insecurity. And you worry a bit… most unsure if you can cope or not…if something happens…so you lose control of it all. But you know people [staff members] will come. Yes like this morning, when he had such a bad turn [husband had epileptic fits]. It was really relaxed because they [staff members] were here” (65-year-old wife of patient with brain tumour, study 13) Q10. “No, you can talk with them. It is easier than if you have to call the doctor and talk, then you always have to hurry, it is not really the same// but they are never in a hurry in that way, they know, they are never stressed really but they can sit there and have a minute of peace and quiet. Yes if there is something else I want to ask about” (patient 5, study 19) Q11. “…I think the worst thing was it took a while for the Red Cross to come and fetch everything back. That was the worst. I couldn't come in here until they'd been because I couldn't stand looking at an empty bed. That was the worst I think” (caregiver 10, study 4) Q12. “By then my son was still conscious but had difficulties speaking. One of the nurses stayed by my son […] The presence of the nurse was a relief to me; The nurses made the examinations that are legally required to declare death. Then they and the family all gathered in the kitchen. There was time to tell about the last hours, there were opportunities to weep, to share hugs. […] The nurses took charge of the practicalities. They arranged for the last transportation. And they stayed as long as the family members wanted them to” (caregiver of 38-year-old patient with cancer, study 9) Q13. “I call them “windows of time”. You've got an hour here or two hours there, so when one of my daughters is here, or somebody's here. I'll run out and do some running around. I'll grab that time to run. You have to be kind of flexible. You can't be real strict [about your routine]. You have to kind of flow with the punches and jump on the opportunity. Or sometimes he'll sleep part of the time so you can break away without feeling like you're being neglectful.” (49-year-old wife, study 11) Q14. “If someone came for some time to look after the patient and give the caregiver a rest, if they could stay there for a day and the caregiver can go out, go shopping, just to get out then, that could give them a real break…”; “Is so different, I feel I am isolated, I feel I don't have a life.” (caregiver, study 7) Q15. “People say go out take a break and I say no, I don't want to go anywhere…I'm not interested….I feel my duties are here: my duty is to work for my husband. And I want to do as much as I can.” (caregiver, study 6) Q16. “If I had a day off I will have a day off but I am still worried about her and I want to get home. So I can't go for long because I can't leave her too long” (caregiver, study 7) | |
| Competence | Effective symptom control (physical and psychological) Sense of security by relieving suffering and trusting in team—opportunity to refocus on living with normality and preparing death | Q17. “Six weeks ago, when I had difficulty breathing, I felt … the end is approaching… I just lay in bed and thought ‘I hope death will come soon’… I had lots of thoughts like that over several days. … But then I got morphine [prescribed by the palliative home care doctor] …It has taken away these thoughts … and now I feel calm again, in mind and body, and secure” (62-year-old woman with gynaecological cancer, study 13) Q18. “Knowing that they know what they're doing, I have confidence in the way they handle problems. I'm comfortable. You can trust them with having the medical part of it competently too. I can tell from the way they express themselves, the kinds of things that they are saying. They tell you the point of what they're doing.” (40-year-old niece, study 11) |
| Effective communication skills (listen and acknowledge roles, inform and teach, give anticipatory guidance and share decision-making). Care at home tailored to needs and adapted to family life, facilitating normality at home and giving a sense of control and mastery of the situation. Increased security by managing uncertainty through guidance | Q19. “I feel a bit insecure when it is not the same staff members coming… I have good contact with the two assigned nurses. It is not the same with the others… The two assigned nurses sit down and talk to me…not only about me being sick … but about what I have done in my life, what I have been able to do … it is more personal” (62-year-old man with prostate cancer, study 13) Q20. “I've had three visits from the palliative care service and three different nurses have come, how can they know what I really need” (caregiver, study 10) Q21. “I'd had total responsibility for my sick relative for four months, and for me, APHC was an enormous relief. For the first time in a very long time I was incredibly relieved just to have someone that I could talk to sometimes.” (caregiver, study 16) Q22. “Throughout the whole period of my husband's illness, I tried to be with him as much as possible. I understood what was happening thanks to APHC. Especially during the last days they were very skilled in preparing us what was going to happen, step by step. I really felt secure and felt their deep human qualities!” (49-year-old woman, husband with lymphoma, study 14) Q23. “It is very clear to me what is going on, the deterioration. I talk very openly with doctor X about that and mother takes part in these discussions too. We discuss these issues very well, I think, so it is clear to me what is going on and that we are approaching the terminal stage, rather soon, I think. Interviewer: Why do you think so at this point? Informant: I think so because of her blood tests, they have discovered new mets, she feels sick, has little appetite and her condition is deteriorating.” (caregiver, study 15) Q24. “[It was helpful for me with informative] Talks with doctors and nurses at APHC at my pace. The staff had a supportive attitude that gave me a feeling of being one of the team, that was going to make life as comfortable as possible for my husband.” (70-year-old wife of patient with brain tumour, study 14) Q25. “I've got a little cooling bag that I have the injection in.…Those are the sort of things you have to remember to take with you; it's easy now—we've had it so long, so now you know what you need to take with you so that things will be okay.” (caregiver, study 2) |