Oral Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2022

Developing resources to support Australian families to care for someone at the end of their life: A literature review, scoping study and qualitative study (#53)

Kristina Thomas 1 , Jennifer Tieman 2 3 , Peter Hudson 1 4 , Deborah Parker 5 6 , Di Saward 1
  1. Centre for Palliative Care, St Vincent's Hospital Melbourne, East Melbourne, VIC, Australia
  2. Caresearch, Flinders University, Adelaide, SA, Australia
  3. Research Centre for Palliative Care, Death, and Dying, Flinders University, Adelaide, SA, Australia
  4. University of Melbourne, Melbourne, Vic , Australia
  5. School of Nursing and Midwifery, University of Technology Sydney, Sydney, NSW, Australia
  6. IMPACCT, University of Technology Sydney, Sydney, NSW, Australia

Background:

Most people living with a terminal illness and approaching death will need the support of a partner, family member, or friend to provide physical, emotional, and practical caring supports.  A significant portion of these ‘carers’ can feel overwhelmed, isolated and experience psychological and/or financial distress. Carers can have unmet information needs which can change across the caring period. Trustworthy, practical and easily accessible information for carers can reduce stress by providing guidance in care activities, by acknowledging the value of the carer role, and by preparing carers for dying and bereavement.

Methods:

Guided by a National Reference Group, this project undertook a multiphase set of activities to enable the development of an online carer resource. These activities included a literature review of the needs of carers supporting someone with a terminal illness (68 articles met the inclusion criteria), a scoping review of existing online resources (from 33 websites identified as having relevant content), and interviews and focus groups with 18 carers to understand their experience and context of caring. This information formed the basis for potential digital content.  

Results:

The literature review identified carer needs for practical and psychological support along with better education and strategies to improve communication. The scoping review of available online resources suggested that while information available to carers is plentiful, much of that which is provided is general, disparately located, inadequately detailed, and disease specific. Carers who were interviewed highlighted the need for helpful information on: services, symptom management, relationships, preparation for death, managing the emotional and psychological burden that often accompanies caring, and support during bereavement. 

Conclusions:

The study led to the development of an open access online resource, CarerHelp (www.carerhelp.com.au), for use by Australians caring for a person who has palliative care needs. The web metrics demonstrate substantial use of the resources.