Attitudes and confidence in caring role

Some carers expressed initial hesitation to accept medicine responsibility because it was a daunting task or because of fear of making mistakes that would lead to adverse outcomes.

I'm sure it’s the same when somebody says we're going to be climbing Mount Everest - I'm sure I would be apprehensive and anxious about it until I got the training. (Participant 7)

I just didn’t want to feel after it all like I contributed to his death. (Participant 6)

The majority of carers, however, expressed that the desire to keep the person at home outweighed concerns about administering medicines.

We didn’t have a lot of chance to think about it or worry about it, it just became what was necessary…We were prepared to do anything to keep mum at home. (Participant 1)

Shared responsibility within caring experience

Although some participants were sole carers, caring was often a shared responsibility between family members.

Fran and I did the medications…inserting the medications et cetera doing the top-ups. Kim chose not to; it was something that she just said no, Fran and I knew what we’re doing and so she took other roles. (Participant 1)

The resources were used to facilitate collective understanding among family members should they need to step in.

I even asked my brother to actually watch the DVD and everything as well, in case there was a family member that we needed to swap over to make sure that we would both be comfortable. (Participant 8)

Facilitators of managing subcutaneous medicines at home

Feedback appraisal and 24-hour nurse support were noted as major facilitators of managing breakthrough palliative symptoms at home.

Seeing the effect of medicines motivated carers to continue managing symptoms despite hesitations. This feedback appraisal enhanced confidence in undertaking the task. Being able to alleviate symptoms made carers feel powerful rather than helpless.

To know that you’re able to treat something, at any kind of level, to fix either discomfort or anxiety, is a really big thing. To feel in charge of, I guess, lessening someone’s suffering is a really big thing and it’s really quite a privilege to be able to do that (Participant 4)

The 24-hour phone support was crucial in making carers feel well-prepared to take on the role and was particularly useful in instances where carers needed to prepare medicines.

At the end of the day, what really helps is that you know that you’re not alone and you can contact them and ask a question. Even at night, when they’re off, they give a phone number…so you’ve even got after hours support. (Participant 4)

One point raised by multiple participants was the importance of stressing to carers that the dose of medicines was not enough to be lethal. Reassurance about this was critical in reducing carer stress and anxiety around potentially harming patients.

One of the fundamental things that needs to be reiterated over and over again, that you’re not killing the patient by giving them the medication. It’s a worm that gets buried under the skin and just wriggles away. (Participant 3)

It was noted that, with practice and adequate professional support, all carers should be able to feel comfortable and competent in providing symptom relief at home using subcutaneous medicines.

Any carer should feel like they can handle the situation if they’ve got practice. It’s not a matter of just saying, oh, I couldn’t do that… So, there’s no reason why people shouldn’t be able to do it. (Participant 2)

Therapeutic relationship with nurse

The relationship with the nurse was fundamental to the success of the training. Nurses were described as personable, enthusiastic and encouraging, which collectively contributed to a positive training experience.

Her (the nurse’s) excitement also helped us engage as well. (Participant 3)

Carers felt the nurses delivering the training were empathetic, treated them as equals, and tailored training to their specific caring scenario.

She understood her job so the way she delivered it, the way she showed us each component like she was training another nurse. Also she had taken into account our different roles. (Participant 3)

Positive attitudes, empathy, and patience were key in reducing carer stress and anxiety. A number of carers described the demeanour of the nurse as calming.

She did it at our pace, and it made caring for him so much easier and so much less stressful. (The nurse’s) calm, relaxed nature helped keep us calm and relaxed about what we were doing. (Participant 5)

Face-to-Fface tailored demonstration perceived as most important

Face-to-face demonstration was perceived as the most important part of the training. Step-by-step demonstration accompanied by clear communication, extensive practice and seeing no needles were involved enhanced carers’ confidence and eased anxiety.

When we could see that it didn’t involve needles, that it was just basically having the correct dose and then unscrewing - screwing it on, it gave us a lot of confidence. (Participant 1)

I mean, in training, it is repetition is going to bring on the good actions later on, and people do things over and over and over and over again. Repetition is one of the major factors of people learning what they have to do properly (Participant 2)

Resources were perceived to be useful, but face-to-face training was perceived to be the most important given the hands-on nature of the task being learnt.

You can read as much as you like…but because this involved much more than that, it (hands-on training) gave me the confidence to put into practice what I'd read. (Participant 11).

Resources seen as adjunct to training and provided reassurance

The caring@home resources were described as visually appealing, easy to understand, well presented and helped facilitate comprehension. They were a useful adjunct to the training, helping to reinforce what was learnt. Participants noted that the resources were particularly helpful as a reference to facilitate information retention at a time when strong emotions and stress were likely to impact health literacy.

You could only take in so much (at the time of training)…particularly when you are dealing with the emotions and to be able to go back and look at it at whatever time of day, it was good to do that. (Participant 1)

The training was great, but then when you’re at home and you’re a bit sleepless, and a bit stressed, those resources were the adjunct that made it all work. (Participant 5)

Resources facilitated care continuity

Resources helped to facilitate information and management continuity among family members (carers and non-carers) and the formal care team. The resources enabled collective understanding among family members, including those not in a caring role.

If there were other family members that were wanting to understand, then we would show them the book and that it was reassuring for them too. (Participant 1)

Participants noted that the medication diary was particularly helpful in facilitating management continuity and better communication between the informal and formal care team.

So I like the fact that I could record it, I could write why you'd given it and I could write later what happened, so I could then feed back to the nurses what had been happening at what stage of the day or night. (Participant 12)

Experience of medicine preparation

Carers did not prepare medicines in all instances, in some services nurses routinely prepared syringes for later use by the carer.

We make sure that we’ve always got plenty of medication on hand and the needles and everything, to make sure that we’re never going to be left without things. (Participant 2)

Carers who did prepare medicines themselves learnt by watching the nurses and initially did so with nurse supervision. Carers often established a routine for pre-preparing medicines so that nurses could check pre-prepared syringes.

I would draw up the medication in the morning, before the Palliative Care Nurse would come and I would make sure that I would have enough for the night and a little left over, just so that I wasn’t having to think about drawing up medication in the early hours of the morning, or at night. (Participant 4)

Many carers noted that avoiding unnecessary contact with the nurses was important to them and motivated them to take responsibility for this task.

There’s no sense jumping on the phone in the middle of the night, getting someone out of bed, when really all you have a to do is draw a little bit of product into a syringe. It’s not that hard. (Participant 6)

We had a lot of human resources to support mum when we knew that there were a lot of people out there that didn’t have that. We wanted the nurse to be actually available for them. (Participant 3)

Feedback appraisal—pros and cons

Immediate symptom relief provided reassurance that the correct procedures were being followed. On the other hand, carers would question whether they were managing symptoms appropriately if they did not see rapid symptom relief after administration of medicines. Deterioration caused additional stress to carers. The importance of telephone support was highlighted in these cases.

…it was full on. It was me phoning to get permission to change doses and everything. I probably think I went into shock that night or the next morning, because I just needed the assurance that I had done everything I possibly could, due to not getting the results for the medication that I thought I would be getting…. (Participant 8)

Standing challenges

Carers described two key areas amenable to further education and training: (1) managing multiple medicines and (2) deciding when to provide symptom relief.

We had a range of medications, I think five or six by memory…for different symptoms. That was the part that took a little bit more understanding. (Participant 6)

The majority of participants noted that more information was needed to help with symptom appraisal and clinical decision-making.

Look it would be nice to understand how or when you know that the patient requires medication. (Participant 11)

I didn't know how accurate I was, because I had never seen my father in pain or agitated. So I just don't know - that would be my only query is gauging that. You would get used to it after a period of time, but I really didn't have that opportunity. (Participant 8)