Health for help

When an individual is diagnosed with cancer, their spouse, child/ren, parents or friends often take on the caregiving role to support them with their diagnosis and associated treatments and while this can provide significant benefits for both the patient and the health care system, many caregivers report higher incidence of fatigue, stress, mood disturbances, insomnia and digestive complaints than their non-caring counterparts. Some authors even go as far as to say that ‘caring for a terminally ill loved one can increase one’s own risk of mortality’.

 A report for Palliative Care Australia titled “ ‘The hardest thing we have ever done’ - The social impacts of caring for terminally ill people in Australia, 2004” highlighted the need for why we need to take caregiver health seriously (especially when many cancer caregivers end up providing end of life care) and where the gaps are in how we are currently doing things: 

“The current provision of services for informal carers has been described as ‘crisis intervention’,  as it is only in crisis situations of imminent or apparent breakdown that services respond. Those carers who appear to be coping in their role and do not request services are assumed to have  no unmet supportive needs.” (p.31).

In addition to providing day-to-day practical support, many caregivers also provide emotional support which can make them feel ‘on call 24-hrs a day’ while they juggle their own lives, commitments and responsibilities. This can lead to caregivers suffering additional stress, anxiety, depression and a decline in their overall health and wellbeing. 

This additional stress in caregivers can be caused from the Burden of Care: the degree to which a caregiver perceives a reduction in their physical, mental, social and spiritual wellbeing as a result of the caregiving experience. Rising burden of care levels are associated with an increased risk of and experience with declining mental health; and we now understand that mental health can affect dietary behaviours and an individual’s nutritional status.

Stress has also been identified as a contributor to the burden of care and changing dietary behaviours as ‘stressed individuals may shift preference for more palatable and energy dense snack foods, which are less healthy and higher in fat’. Survey data from Macht (2008) showed that most people experience a change to their eating patterns when they are stressed. On average, 30% of people have an increase in food intake and appetite and 48% experience a decrease in their appetite or food intake when they are stressed. Additionally, Macht (2008) found that emotions, as well as mood has been found to affect eating responses such as the motivation to eat, the speed in which we eat, the amount we ingest, food choices and metabolism and digestion. So, while studies have shown that caregivers experience high levels of stress, and that stress can impact dietary behaviours, we still do not know if and what the connection could be in cancer caregivers. 

Why looking at caregiver health and nutrition is important 

Given that cancer caregivers report higher incidence of stress than non-caregivers and as mentioned, stress can influence dietary behaviours and food choices, it is plausible to consider that the dietary behaviours of caregivers might change when they take on the caregiving role. To our knowledge, there have been no specific investigations that have investigated this. There is strong evidence linking increased levels of perceived or actual stress to unhealthy dietary behaviours and heightened levels of stress can result in greater preference for and intakes of sweet foods, high-fat foods and more carbohydrates over protein. Food is also considered a cheap and available resource that provides relief from stress.

So, with the increased stress and decline in mental health commonly experienced in cancer caregivers, there is potentially an increased risk for poorer dietary behaviours, and with poorer dietary behaviours the risk of chronic disease increases. This could then potentially worsen the load on the healthcare system where instead of being able to provide care and reduce the burden on the healthcare system, caregivers could potentially become another patient requiring assistance. 

Significance of our study

As informal caregivers play a substantial and significant role in the delivery of cancer care services in the Australian healthcare system, we believe that maintaining and supporting a caregiver’s ability to provide care is not just important to prevent them from potentially becoming a patient themselves, but also to allow cancer care services to continue to effectively be delivered in the clinical setting. While there are several support services available for caregivers including respite and counselling services, there are no services (that we are aware of) that address the additional risk factors for chronic disease including nutritional intake.

What our study will look at 

After conducting research with cancer caregivers, oncology health clinicians and those working in cancer supportive care, we learnt about what they believed would be necessary to best support cancer caregivers and have created a program incorporating their suggestions. 

This program is called Health for Help and applies a health coaching model which can be individualised to each caregiver’s unique set of circumstances. Given the important role that caregivers play in helping cancer patients, this research will allow us to see if a health coaching intervention could possibly make a difference to caregiver’s nutrition and therefore, how they feel.