What is the Healthy End-of-Life Planning about?
Healthy End-of-Life Planning (HELP) is a national digital health program that uses a health promotion approach to increase community capacity and collaboration around death, dying, and bereavement. We call this a ‘network-centred approach’ to palliative and end-of-life care by shifting social norms and individual behaviours around offering, asking for and accepting help. This aims to build the social and practical supports we often need when caring at the end of life, and offers an easier way to coordinate shared help, and a central place to plan, share and connect with family and friends. When ‘network-centred care’ is in place, end-of-life caring looks like assistance with shopping, meals, gardening, dog walking, companionship, conversations, grief support, transport assistance, social visits – in other words, it can be anything that carers need.
Why are social networks and support so important for families caring for someone at the end of life?
Most people at the end of their life spend most of their time with families and friends outside formal health care services and rely on informal carers to help them with the daily tasks of caring. Although caring for someone can be a fulfilling and rewarding experience for the primary carer, it can also be demanding on their physical, mental, and social health. Research has shown that social networks protect primary carers from social isolation and physical and emotional exhaustion, allowing them to continue providing care (Horsfall, 2018; Leonard et al., 2013; Reeves et al., 2014). Social networks are flexible and responsive to different levels and types of help and allow a broader consideration of the resources available to assist or support someone in end-of-life care. Consequently, social networks share the role of caring for families and improve social and practical care outcomes.
How might the HELP App assist families caring for someone at the end of life?
The HELP App provides a platform to achieve this. It assists individuals and families caring for someone at the end of life by coordinating the practical and emotional support they need from friends, families, neighbours, and relatives while keeping them connected to their support network even when they are at home or hospital. HELP makes sure that the person needing help gets the right help at the right time by keeping everyone in the loop in their support network. The Healthy End of Life Program (HELP) App is free and available to download from the App Store and Google Play.
Is HELP evidence-based?
The HELP is based on the evidence-based public health palliative care framework that was developed through research at the Public Health Palliative Care Unit (PHPCU) at La Trobe University, Melbourne. This program involves ongoing research that collects real-time national data through the HELP Application and Digital Data Reporting System on informal networks providing social and practical support. In doing so, we are trying to generate Australia’s first national community-based palliative and end-of-life care dataset to understand the role, contribution, and gaps in the social dimensions of informal care, thereby contributing to and shaping the delivery of palliative care now and in the future. HELP can be used by community groups, health service providers, researchers, policymakers, local councils, community houses, disability services, and homelessness services to develop public health palliative and end-of-life care strategies that draw upon existing assets and strengths to address community needs.
How can health professionals use the HELP App with the families they work with?
Health professionals can incorporate ‘network-centred care’ into their daily practice with patients, clients, carers and families, alongside person-centred and family-centred care. In this way, they can inform their clients with life-limiting illnesses and their carers not just about the services they ‘do’ provide but also about the services they ‘do not’ provide, such as the social and practical help that is accessible only through their social networks. By introducing network-centred care through the HELP App, conversations about the benefits and importance of social networks in sharing the caring role can be facilitated to produce optimal support for carers. Health professionals can then direct families to access resources that explain why and how to use the HELP App.
References:
- Horsfall, D. (2018). Developing compassionate communities in Australia through collective caregiving: A qualitative study exploring network centred care and the role of the end of life sector. Annals of Palliative Medicine, 7(Suppl. 2), S42-S51. https://doi.org/10.21037/apm.2018.03.14
- Leonard, R., Horsfall, D., & Noonan, K. (2013). Identifying changes in the support networks of end-of-life carers using social network analysis. BMJ Supportive & Palliative Care, 1-7. https://doi.org/10.1136/bmjspcare-2012-000257
- Reeves, D., Blickem, C., Vassilev, I., Brooks, H., Kennedy, A., Richardson, G., & Rogers, A. (2014). The contribution of social networks to the health and self-management of patients with long-term conditions: A longitudinal study. PLoS One, 9(6), e98340. https://doi.org/10.1371/journal.pone.0098340