Carers of people with cancer, heart problems and other long-term illnesses report needing more psychological support but often stop short of accessing it.
Whilst that statement may perhaps not be surprising to people who have been in the situation of caring for a loved one, it is a stark conclusion which follows a comprehensive review of 20 years of research, involving more than 80,000 people.
The findings are published today, by experts from the Australian institutions the University of Sydney and the University of Queensland, in the peer-reviewed journal Psychology & Health .
"Carers have a tendency to put the needs of the person they care for before their own," explains lead author Hannah Isaac, a PhD student and research assistant at Sydney University's Psycho-Oncology Cooperative Research Group (PoCoG), Faculty of Science.
"Part of the broader issue with carers not accessing support is that they don't identify with the title 'carer' itself. Many think that to qualify for carer support you have to be providing 24/7 care (feeding, bathing etc.). However, the caregiving role often encompasses far more common, day-to-day tasks like attending appointments, helping with treatments, picking up more housework, providing emotional support etc.
"This can lead to the carer minimising their own mental health needs, especially when the person in their care is sickest – a time when psychological support would be particularly valuable."
Mrs Isaac and the team's aim was to get an in-depth understanding of the interactions with psychological support these carers have (using the wider description who really qualifies as a carer).
To do so, they searched the scientific literature for papers published on the topic since 2005. They identified 29 relevant studies involving 81,167 carers of people with chronic physical conditions in the UK and other parts of Europe, the USA, Canada, and Australia. The carers tended to be female and were often looking after a husband or partner with cancer. Others were caring for someone with heart disease, Parkinson's disease or who had had a stroke.
The carers said that they wanted help in dealing with loss, uncertainty and feelings of guilt, maintaining social contacts, adjusting their interests and ambitions and coping with changes to sexual relationships.
Help is needed, but not being accessed
Examination of the data revealed that across countries and continents, the pattern was the same: many carers were interested in or said they needed counselling, a helpline, a support group, time with a chaplain, or other psychological help – but few used such services.
For example:
- A third of carers said they wanted counselling but less than a sixth had accessed it.
- 18% of carers said they wanted help from a social worker but only 9% had received it
- 40% of carers said they were interested in government services (this could be a national helpline or disease-specific information) but just 10% had accessed them.
The review also showed that those caring for the sickest patients were particularly unlikely to access psychological support.
In addition, carers who had used, or intended to use, psychological services were typically younger, female and more highly educated.
Finally, carers were more likely to access support if a doctor or other healthcare professional offered it. However, it was relatively uncommon for it to be offered.
"This is a by-product of the very patient-focused healthcare models that operate in many countries. Healthcare systems rely on carers to shoulder an incredible load at home, while rarely offering support when that caring role negatively impacts their wellbeing," adds co-author Dr Rebekah Laidsaar-Powell, a Senior Lecturer in Psychology at Sydney.
What are the barriers preventing carers from seeking help?
So, why are so few carers looking after their emotional wellbeing?
The authors have several ideas. Financial and practical barriers, such as finding someone to do the caring while they see a psychologist or attend a support group, may play a role. However, several other factors are also thought to be at play.
These include carers putting the needs of the person they are looking after before their own emotional needs.
Isaac explains: "In our previous research, we found that many carers deprioritise their own needs. Often, this is because carers would compare their own needs to the needs of the patient or other carers with more extensive caregiving demands.
"As a result, carers often devalued or dismissed their own concerns or felt guilty about accessing resources.
"We also found many carers didn't relate to the term 'carer' or believe they met criteria for the 'carer' title and therefore did not seek carer-specific services."
Lower mental health literacy among carers – lack of knowledge about mental health conditions – may mean some don't realise they need help with their mental health or don't know where to go for if they do.
It is also likely that stigma about mental health conditions is stopping some from seeking help.
Next steps to help carers access their un-met needs
The research concludes that to help carers globally, there is a clear need to facilitate psychological support-seeking among carers, whilst highlighting the benefits of support, validating carer needs and addressing attitudinal barriers.
Dr Laidsaar-Powell, who is also the national chair of PoCoG's carers interest group, says: "Carers are the invisible backbone of our healthcare system. We need to be routinely screening carers for distress and supportive care needs, and creating referral pathways for carers to access evidence-based tailored support.
"Failure to systematically identify and support carers risks compromising both the carer's own wellbeing and the sustainability of the care they provide."
A limitation of the paper, the authors acknowledge, is that most of the research they reviewed was carried out in Western countries and involved women caring for husbands with cancer. Additionally, the review may have underestimated the gap between carers' desire for and use of psychological support, owing to some carers not recognising themselves as carers.
Mrs Isaac concludes: "Providing care to a loved one with a chronic illness can be incredibly challenging and have a considerable impact on the carers' emotional wellbeing. We know, for example, that rates of depression and anxiety are higher among carers than in the general population.
"Without proper support, carer distress can increase and affect their ability to support the person they're caring for.
"Improving carers' awareness of support options, reducing the stigma associated with seeking support and providing practical assistance, such as respite care, are all key to helping carers care for themselves."
