Knowing, doing and negotiating care

August 29 2018

A/Prof Janine Wiles who led our new paper exploring end of life caregiving

Regular readers of our blog will know that one of our key concerns over the last couple of years has been thinking about the support needs of family and whānau carers. The work they do (or more accurately we do as I’m sure we all have some relevant experience) is critical. However, the support available from all sources for family caregiving is very limited which is why we were very pleased to have the opportunity to support Ros Capper’s  book ‘The Accidental Carer’. This practical guide for relatives caring at the end of life is the first we are aware of internationally  written by ‘someone whose been there’.

We have just published another paper – led by Te Arai researcher Janine Wiles – which  we feel has practical value in terms of helping think about the support carers need. Incidentally Janine’s significant back catalogue of work exploring various aspects of ageing and caregiving is definitely worth a read if you haven’t come across it before.

Our latest paper is another from the HRC funded Te Pakeketanga study which explored the end of life circumstances of people dying in advanced age. This time we explored the complex nature of family caregiving. Our aim was to help inform the development of initiatives and interventions to support family carers. Such supports are definitely needed – both within and outside of healthcare settings.

However, one of the identified limiting factors to developing new interventions has been limited understanding of the nature, particularly of end of life caregiving, from the perspective of caregivers themselves. We drew on their experiential accounts to present a new model to explain the complexity of work undertaken by family members caring for people of advanced age at end of life. We move understanding beyond the dominant focus in the field on the ‘doing’ of caregiving tasks. Unsurprisingly, we identified that there is much more to caregiving than task completion. And we identified two inter-related components of any task being undertaken, namely ‘knowing’ and ‘negotiating’. (I must also note thanks to Dr Lisa Williams for making it look pretty!).

We also extending thinking about the nature of care tasks people are undertaking. We present the first typology of end of life caregiving within the context of advanced age.

In total, we identified nine broad categories of care tasks: accompanying, general care, resourcing, personal care, emotional support, mediating and advocating, information gathering and decision-making, medical and nursing care, and financial management. Many of these involved repeated acts of support and care over time, others were significant events or tasks which might happen only once or which evolved over time. Crucially, all involved the three components of knowing, doing, and negotiating.

Here is one example for what seems like a mundane (and potentially ‘easy’) task – grocery shopping.

But it was a far from mundane task for one of our participants as she explained:

“P: ‘I did feel quite annoyed sometimes, my sisters would come down [and offer, how can we help?], ‘Well you can take Mum shopping today, I’m having the morning off’, which was like ‘Yes!’ [But t]hen Mum wouldn’t go shopping with them after the first time that they took her shopping because they won’t let her buy – she wants to buy budget toilet rolls [but they said] ‘Oh you’re not using that rubbish!’

Her shopping experience then wasn’t as good, so she wouldn’t go with them again. It was like, I’m furious! Because it was that was my once or twice a year that I might have got a Saturday off to do my own thing’”

And here’s  another quote from her interview which really poignantly captures the caregiving experience of many of our participants, particularly those (mainly woman) who were caring for an older parent.

“P: I felt quite trapped. You go from being a Mother, your children leave home, you’re free and then all of a sudden you really get back some more children. Your time isn’t your own, you’ve got commitment. Like I had to go shopping every Saturday. … Every Saturday you go here, here, here, regardless of how you feel, whether you want to, every day you’ve got to go here, here. …There will always be somebody who carries the load. That person is not going to be appreciated…they’re not going to be thanked.”

One final example relating to the balancing act of care at time of death. The practice of administering morphine clearly followed the three-part process. The process of knowing was one of learning. Getting the task done was fraught with anxiety, but nonetheless carried out. The negotiation was with the caregiver themselves, and involved balancing the fear of causing further harm, with the desire to alleviate suffering; and the ongoing negotiation of sadness and regret about this experience through their own bereavement

“[At 2am I phoned hospice but] they could not get anybody out to help … at that time of night… but they said, ‘If you mix up these two medicines or things for an injection and give him this injection it will help him settle and his breathing.’ And [we] were quite traumatised by that because neither of us had given an injection before. It sounds like such a small thing, but Dad was skeletal. There was nothing and nowhere, no flesh to put the injection in, and I was terrified that I would mix the mix wrong and do something wrong and or I’d get an air bubble in it or something, so I ended up giving him a little subcutaneous injection in his arm and … that was so hard, and he flinched when I gave it to him so I knew that he’d felt it and I felt as though I was inflicting more pain. It did settle him somewhat but he was still clearly having difficulty.”

Overall, we feel this paper makes an important contribution to discussions about how we best support the hugely important, and growing, family carer workforce. We confirm that caregivers are experts and that caregiving is a highly skilled, and complex, undertaking.

We also challenge the current focus of the, albeit limited support, that is available for carers. This tends to focus on the ‘knowing’ aspect of caregiving support, for example, by providing practical information and teaching techniques and skills. Our work confirms that interventions of this type are needed – and they were not always available to our participants when needed. However, there is also a need for recognition, and opportunities to discuss, the other component to ‘doing’ the caregiving task: the complex negotiation work with which it is imbued. Which strategies would best address this need are currently unclear. However, they are likely to be those which enable carers to have the time and space to identify and discuss their own needs and concerns within a supportive environment.

To read the full paper see Age and Ageing. If you want to access the full text and can’t please email: m.gott@auckland.ac.nz

And as always we need to acknowledge our participants. We are continually moved by the time people are willing to give us to share their experiences and views of often very difficult experiences. Thank you.