Preparing the family caregiver

Victorian clinical nurse consultant, Annette Cudmore, wants to empower caregivers in their caring role through improved information services.

Ms Cudmore spoke at Palliative Care Victoria’s biennial conference in Melbourne last week about “preparing the family caregiver to care”.

Working at a hospice in Shepparton, Ms Cudmore understands the importance of providing the “right care, at the right time to people who are dying”.

“We never know when we will have to provide care to someone who is dying. They may be young, elderly; they may be a spouse, partner, parent or a neighbour or good friend.

“Imagine the chaos [a caregiver] may find themselves, asking: ‘where to from here? What do I need to be able to care for [a loved one]?’ – and how can we as care providers make their role easier?” Ms Cudmore asks.

According to Ms Cudmore, many caregivers “move mountains” for the people they love, but the role they play is often not recognised, with little validation associated with caregiving.

“For a number of years now, the needs of caregivers in palliative care have gained momentum, both nationally and internationally. The needs of caregivers remain a priority; but maybe we are not giving caregivers what they need?” she asks.

Ms Cudmore adds: “Maybe we need to go back a step and find out what information – and which format – would be most useful to them.”

She, last year, completed a research project ‘Exploring the information needs of family caregivers in rural community-based palliative care’ and shared with conference delegates some of the issues rural caregivers face. Ms Cudmore also challenges service providers to become more “creative” in how they meet the information needs of these caregivers.

“We, as service providers, need to ask is the information we’re providing useful. Choosing to live in the country can bring significant challenges,” she explains.

“When you are sad, stressed, tired and tearful; reading realms of information about what you should be doing and feeling is probably not an empowering experience.”

The research project included a mail out of 134 surveys. Questions investigating preparedness to care, current information satisfaction and other useful mechanisms of information provision were used.

Palliative care information was important to the majority of caregivers surveyed, with 97% describing it as ‘very important’. She adds responses varied to carers’ preferred source of information about palliative care, which included DVDs and the internet.

Some of the results of the findings show caregivers are primarily elderly females, with 50% living in isolated areas and trying to juggle their role with some form of paid work. Financial stress is also a significant burden experienced by many rural family caregivers.

Ms Cudmore encourages palliative care providers to ‘keep it simple’ when it comes to providing information services to the family carer.

“Many caregivers want simple and practical things which are easy to use and see, such as a fridge magnet with the Palliative Care Australia contact details.”

One of her goals is to give palliative care providers the ability to improve the opportunity for people to die at home.

“Most caregivers say they’ll climb over any obstacles in their way to care but sometimes these obstacles can seem like mountains – too high and too hard to climb.

“We need to engage with [caregivers] in caring partnerships and develop a response plan based on the needs they have identified as this will allow us to provide them with the right information, in the right format and at the right time.”