Background
Methods
Recruitment procedures
Interview protocols
Interview schedule parent interviewsa | |
1. Can you tell me about your experience of care from the hospice at home team? 2. What was the best thing about the programme for your child and family? 3. Can you tell me about any challenges you encountered with the programme? 3. Can you tell me about any changes you would recommend that could enhance your experience of the hospice at home programme? | |
Interview schedule focus groupsb | |
1. What is the nature of your role with the hospice at home team? 2. What were your expectations of your role in this programme at the start? 3. How do you see your role at the moment? 3. Are there any local policies and guidance for your interactions with the service? 4. What do you think is working well in the current programme? 5. Can you tell me about any changes you would recommend that could improve the programme? |
Analysis
Results
Participants
Themes – parent interviews
Expert care ‘at this time in their life’
… it is extremely good to be able to stay at home and to have your child at home and have that respite at home. I would much prefer it than having to go anywhere… that is the big one, having him at home, being able to keep him at home with everybody … to be able to have him here and to have the break here… having him at home is the key (P3)
I have seen the two sides, I have seen someone come into my home not understanding how important this time is… then I have had the very positive experience of where these various members of LauraLynn came…They take on every aspect of his care…they have listened to me, they have gone with my son, with whatever he wants to do. But I never felt, I have never once felt that this was a chore for them, that this was a job that they were on the clock. It was something really from their hearts, that they wanted to do, that they wanted to give to my son, not even to me, to my son, that they really cared about him. It is not often you get people like that … LauraLynn is a totally different experience (P1)
Benefitting the whole family
…allows you [to] get time with the other children, time to really concentrate on them for a change (P7)
Consistent care
…the consistency rather than the ad hoc piece that we get with other services…that is the best bit, the same people that get to know you and your family and follow up with care every week (P5)
Progressing the programme
…we don’t get that much written information from any of the people that we are linked in with…It would be nice to have some written information (P2)
…at the moment it is one week’s notice, but you know the way we have therapies and stuff going on, there is lots of stuff going on so I think 2 weeks’ notice, if they did the schedule 2 weeks in advance (P4)
Themes – healthcare professionals
Communication within and across services
You might ring them, leave a message. They might ring you back, you are on a corridor you’re trying to go somewhere where you can speak freely…it is a safety issue and it is wrong that you are discussing emotive pieces when you are shouting into a phone speaker. (FG2)
It is very easy, with the best will in the world, to have verbal conversations…you have to have some mechanism for making sure that all care and communication is documented. (FG3)
…we are trying to take it on a case-by-case basis and we have asked everybody to write out their observations and put it through risk …we have been combining those and trending them (FG3).
Education and training
I think we do need to have the processes in place to make sure that we have consistency and continuity…it was quite easy at the beginning where they all started together, it was quite easy to have a focus on them. But as new members of the team are starting we need to make sure that everybody is getting the same consistent induction access to education and training. (FG3)
Lone working
… you have got the support of your team member behind you. It is only a phone call away if there is something that you are unhappy about or something that you need to tease out, support is there…there is great support around us. (FG4)