We sometimes find ourselves on a long and difficult journey. Whether we are a patient, carer, family member or friend, illness takes a toll on everyone involved. Often people reach out to help us but often we don’t accept support, even when we need it. To help change this situation, Andrea Grindrod from La Trobe University is encouraging families and the community to work together.

Andrea has over 20 years’ experience working in public health, project management, health promotion policy and practice, and in developing communities’ capacity to address health and social issues. Andrea applies this expertise to improve end-of-life experiences, combining research, policy and program development to bring about sustainable changes to practice.

Currently, one of Andrea’s main projects is The Healthy End of Life Project (HELP), an evidence-based community development framework that aims to increase community capability and capacity around death, dying and bereavement. HELP provides a framework to guide implementation of a public health approach to palliative care, expanding the reach and effectiveness of palliative care services by engaging communities in caring for their own at the end of life.

Research undertaken as part of the project identified a series of ‘unhelpful social norms’ which undermine opportunities for individuals and communities to increase their capacity to care for one another. Principal among them are the reluctance of carers to accept help, the reluctance of families who need support to ask, and the hesitations and uncertainties of community members to provide help.

“Every time we say no to someone who offers a hand, we deprive them of the opportunity to contribute to care, and ourselves the opportunity to receive practical assistance and emotional support. It’s important to be allowed to support someone we care for, and in my experience, it helps with our grief as well.”

“We want to create communities where those people who wish to be cared for at home (in Australia it’s around 70% of us) to have sufficient community capacity to achieve this, however only 14% currently do. We need to change the culture of the community to reflect a new healthy attitude in which families reach out to their networks for support,” Ms Grindrod said.

As of now, we can all start challenging these social norms and attitudes to help grow an inclusive and supportive community for people nearing the end of their life. 

“We need to encourage family, friends and neighbours that it is not only acceptable to reach out and help people who need support and show there are different ways of going about the caring role, but that it is desirable and sensible.”

“Death and dying could involve a person’s community, and not be seen as a private matter. We would all benefit from creating collaborative communities that are capable to support and care for one another at the end of our lives, or that of our family and friends.”

“It’s not in our best interests to shrink our social networks when we need them most. Instead we could unlock and expand them, and draw from the support they offer us,” Ms Grindrod said. 

HELP has initially developed two resources, designed for individuals and communities, to help create a compassionate community. The HELP Community Asset Mapping Guide  supports organisations and groups to undertake asset mapping of their local communities. The mapping process allows communities to ascertain what already exists, identify gaps and build on local strengths to address need, generate community conversation and bring together local leaders interested in a community response.

For individuals, a Home Care Network Support Plan resource facilitates the caring role and provides a step by step guide to start exploring personal networks. The support plan helps carers and family members draw upon everyday assistance required for caring and encourages people to engage with the caring role proactively and constructively.  

“These tools help to map the care and support people may need. For a person who is ill, or for their carer, the resource can be used to help identify what is important to them, what lifts their spirits and plan for activities to sustain long periods of caring.  This helps everyone involved to feel supported,” Ms Grindrod said.

To learn more about the project and how you can get involved, visit the La Trobe website.

Start making the difference in your community today!