Information and guidance for carers at any stage
A blog post written by Dr. Serra E Ivynian
Carers often say they feel unprepared for caring for someone with a life-limiting illness and have a lot of unmet information and support needs. These include the need for more information about the person's condition, including diagnosis, prognosis and treatment, but also support and information related to practical patient care. This includes help with activities such as dressing and transport, practical household tasks like preparing meals, and finally, how carers should care for themselves and their own wellbeing. Carers require different support and information according to the care-recipient’s circumstance, but also, consider that these needs change over time as the person with the life-limiting illness approaches death, and after death, once the carer is no longer caring.
There is a wealth of information available online for disease-specific support and information, for carers in general, and now, Australia’s first e-health toolkit has been developed specifically for carers looking after someone with a life-limiting illness. CarerHelp is an online evidence-based toolkit for carers of people with a life-limiting illness that has been developed to meet the unique needs of carers at any point in their caring journey. CarerHelp is evidence-based in that its content was informed by speaking with carers themselves, a review of scientific evidence on carers’ needs at the end of life [1], and consultation with national experts. In other words, users can trust that the information on CarerHelp is credible, and rather than scouring the internet for bits and pieces, can find everything they need need in one place.
CarerHelp includes information, tools (including a carer preparedness tool), videos and short learning modules that are structured around a pathway approach. What this means is that CarerHelp is designed in a way that recognises that not all carers will need the same information and support and provides tailored information and guidance depending on where carers are in their caring journey. The five pathways include:
- Pathway 1: When someone needs care
- Pathway 2: Caring when death is a possibility
- Pathway 3: Preparing for dying
- Pathway 4: When the person is dying
- Pathway 5: After caring
Carers often report that they don’t know where to find the support they need. Each of these pathways includes links to various support services tailored to that stage of caring. During the global COVID-19 pandemic, ensuring carers have access to adequate support and information is even more important. To accommodate this, COVID-19 specific resources have also been developed to ensure carers can navigate caring at home, restricted hospital visitations, telehealth, restricted funerals, and grief during these uncertain times.
CarerHelp Evaluation
Health professionals who care for patients with a life-limiting illness and support their carers were invited to evaluate the usefulness of CarerHelp through an online survey. This group included registered nurses, care workers, allied health professionals and GPs who all endorsed the use of CarerHelp and felt it prepared carers for the caring role by increasing knowledge of services, confidence in caring, and ability to self-care [2]. Carers provide the majority of care at home in the last year of life, potentially even more so during the COVID-19 pandemic, where people may avoid inpatient care due to strict public health measures and the devastating scenario of their loved one dying alone without visitors. CarerHelp ensures carers can be equipped with what they need to navigate the practical and emotional challenges of end of life care.
References
- Marco DJ-T, Thomas K, Ivynian S, Wilding H, Parker D, Tieman J, et al. Family carer needs in advanced disease: systematic review of reviews. BMJ Supportive & Palliative Care. 2022:bmjspcare-2021-003299.
- Parker D, Hudson P, Tieman J, Thomas K, Saward D, Ivynian S. Evaluation of an online toolkit for carers of people with a life-limiting illness at the end-of-life: health professionals’ perspectives. Australian Journal of Primary Health. 2021;27(6):473-8.
You can read more about the Carer Help project here.
Dr. Serra E Ivynian
Research Fellow
University of Technology Sydney