The needs of family carers
A blog post written by Dr. David Marco
Family carers form the backbone of a successful home-based palliative care system. It is, therefore, not surprising that caregivers provide up to 80% of patient care needed at home. This role is generally not accompanied by formal training or financial compensation. As a result, it is not uncommon for carers to report unmet needs for information, communication, practical support, and financial assistance.
The Centre for Palliative Care, in collaboration with CareSearch, The University of Technology Sydney, and Carers Australia, developed CarerHelp (carerhelp.com.au) – an evidence-based online resource designed to support carers during their caring role and after the death of a loved one. A core component informing this project was our study which asked the question, “What are the most common needs of family carers of people with advanced disease?”
We conducted an extensive review of current research and found the most commonly expressed needs by carers were:
- Emotional support – needing support with personal emotions as they arise,
- Knowledge about the disease – the desire for further information and education about the diagnosis and cause of the illness,
- Responsibilities associated with the caregiving role – the need for education and training to gain skills in caring for someone,
- Support with self-care – the impact of caring on the carer’s quality of life, and
- General practical support – help with daily living tasks.
Information about how carers preferred their needs be delivered included having access to professional services and support, opportunities for formal education and training, and having open channels for communication with healthcare professionals. Perhaps more importantly, carers also expressed the desire to be acknowledged for their carer role by health professionals and be actively involved in the decision-making process.
Where possible, carers should be asked directly about their unmet needs. We discovered that it was not always clear whether carer needs were identified from direct questioning or assumptions made by researchers based on carers’ ‘experiences’ of caregiving. Furthermore, we need to explore how carer needs may change over time. It is reasonable to expect that the needs of carers are likely to be different at the time when their loved one is diagnosed with a life-limiting illness compared to later in the disease trajectory, when the person is reaching end of life.
Resourcing support services to meet the needs of family carers is an ongoing challenge. At best, our findings can serve as an aid for broad-based planning and general approaches to carer provision. For instance, health professionals could be armed with information about available support services and programs, which can be proactively offered to ensure that carers are aware of what they are entitled to.
Additionally, General Practitioners often have strong relationships with patients and carers, and can be pivotal in ongoing care coordination and linking families to local support services available in the community. Therefore, future endeavours to meet the needs of carers should acknowledge and encourage connections with existing care services while also promoting awareness of other available support services.
Moving forward, we need to ensure we ask carers directly about their unmet needs, so that the right support can be offered at the right time and when it is most needed.
Reference:
Marco DJT, Thomas K, Ivynian S, Wilding H, Parker D, Tieman J, and Hudson P. (2022) Family carer needs in advanced disease: systematic review of reviews. BMJ Supportive & Palliative Care. http://dx.doi.org/10.1136/bmjspcare-2021-003299
Dr David Marco
Research Fellow, Centre for Palliative Care, St Vincent’s Hospital Melbourne.
https://www.centreforpallcare.org/