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Faced with life-changing adversity, some people cope extremely well. Unfortunately, many others, who are faced with the same (or similar) challenges, struggle as stress, anxiety and depression set in. The question that inevitably arises is: why? Why does one person cope, while another flounders? And what adaptive responses do they utilise that make the difference?
These are the questions that have dominated Professor Grahame Simpson’s research for the past 12 years. Indeed, findings from his research are changing the way services are being delivered to carers, specifically carers of traumatic brain and spinal injury patients.
But first, some background.
In Australia, there are over one million carers providing informal care to the value of over $50 billion each year. Understanding the important role that carers play has been recognised for decades and, as such, reducing the anxiety and depression associated with carer burden has been the major focus, not only of research, but also in the provision of carer services.
While Professor Simpson acknowledges that there is a valid reason why the research has focused on carer burden, he explains that this has meant a whole other side of the picture has gone unstudied.
“For decades, the focus of research was framed in terms of family vulnerabilities and risk factors. One of the inadvertent consequences of this is, for a long time, there were no studies around why some families adapted well to the challenges and this is where I decided to turn my attention to,” he explains.
Professor Simpson’s paper looking at resilience was first published in 2013 after a four-year study into the resilience of carers who were looking after family members with a traumatic brain or spinal injury.
“We discovered a whole different dimension around family adaptation and we’ve since been researching the adaptive responses that people use to make the challenge of providing informal care a manageable part of their lives,” he says.
His research found that families who have higher scores on resilience scales are doing things in a different way than families who were scoring lower on these scales.
“From a clinical perspective, there are opportunities for families who are struggling to learn from some of the families who have identified ways to adapt to the challenges.”
Professor Simpson explains that resilience is often pictured as people having grit and powering on against overwhelming odds, however it is much broader than this.For example, another important part of resilience is the ability to mobilise the economic and social resources they need to manage. Indeed, he explains, resilience is made up of a number of different elements and you don’t need all of the elements to be resilient.
Another such element is spirituality.
“One of my doctoral students had an interest in spirituality and researched the topic of spirituality in carer resilience. We included a resilience measure in the research because, we knew from our focus groups and qualitative research, that people often referred to spirituality as one of the elements that they drew upon to cope.
“We found there was a strong relationship between spirituality and resilience,” he says.
Professor Simpson emphasises that the term spirituality is a broad one and that religion and religious observance is a just a sub-set of this broad term of spirituality which can also be experienced in association with an inner world, with nature or a meaningful connection with others.
Another important adaptive response that Professor Simpson and his team have been researching is the concept of hope. He explains that “hope” in the literature was previously studied as hope for the recovery of the person being cared for or supported.
“That’s a narrow definition. We are looking at the hope the family member would have about their own lives as a broader application of the term.”
“Positive emotions isn’t just the absence of negative emotion. Our work is about linking to the whole area of wellbeing. Services shouldn’t just be looking at reducing the level of mental health issues or stress but need to take a holistic approach in terms of promoting positive wellbeing,” he says.
The ‘Strength to Strength’ program
Arising from Professor’ Simpson’s research on resilience is the ‘Strength to Strength’ program which aims to build resilience among families who are supporting a person with a traumatic brain or spinal injury. Professor Simpson explains that this program was the first alternative to the carer support group model, which for decades, was all that was offered to carers.
‘Strength to Strength’ is used by the i-care Lifetime Care and Support in NSW as one of their frontline programs for enhancing the wellbeing of family caregivers and is an excellent example of the translational components of this research. The program is also currently being trialed in the U.S. at the Rehabilitation Institute of Michigan in Detroit as part of a five-year trial.
In addition, the program has been successfully implemented at the Mater Hospital in Brisbane where it has been adapted to run with families supporting teenagers and adults with a drug and/or alcohol problem. Plans are currently underway to formally evaluate the program in this field.
Where to now?
The ‘Strength to Strength’ program focuses on resilience which is its foundation, but research being led by one of Professor Simpson’s post-doctoral research fellows, Dr Kate Jones, is now underway to see how to also incorporate spirituality and hope into the program.
“We’re looking at how we can train rehabilitation staff to deliver spiritual care which is another component of a holistic approach to rehabilitation.”
“From a clinical perspective, we aim to identify the strengths people bring to their challenges and then look at ways we can support them in using hope, resilience and spirituality to deal with the distress and challenges they face.”
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