In the UK, family carers supporting their ill or disabled relatives save the country over £100billion a year in care costs – roughly the annual cost of the NHS. Family carers require support if they are to fulfil their roles compassionately, effectively and lastingly.
Published today in the British Journal of Health Psychology, a new study by Cardiff University sets out to understand what sustains a carer's role and what makes caring a positive and fulfilling experience.
In their research, clinical psychologists examined the causes behind why many carers of stroke survivors experience life-enrichment and positive personal growth once they have overcome the shock of their relative's illness.
They present a theory which emphases the role of thinking style and processes (how the carer makes sense of their problem) to explain why all the carers who participated in the study experienced positive outcomes following the trauma of their spouse's stroke.
"Most research has up until now focused on the negative outcomes of those caring for stroke patients – and so the most surprising aspect about our research is that carers in our study were consistently able to regard their caring role as having been a positive experience, despite the trauma they endured," said research co-author Professor Reg Morris from Cardiff University's School of Psychology.
"Traumatic experiences are seismic events that shatter a person's known world: their goals, beliefs and ability to make sense of life," he added. "But by repeatedly thinking about your trauma in a pragmatic and sense-making way; reminiscing and looking to the future; proactively trying to manage the problem; and using the support of those around you, then it is not only possible, but likely that you will experience positive growth after trauma."
The study surveyed carers of stroke survivors on average nine years after the stroke. The majority attended stroke clubs organised by The Stroke Association or The Bristol Area Stroke Foundation. As well as detecting whether psychological growth had occurred, the survey explored a range of practical and psychological factors to determine which of these contributed to growth and positive outcomes for the carers.
Professor Morris continued: "We were intrigued to find that positive outcomes of trauma for carers depended more on psychological factors than on practical matters such as level of disability and age. We hope to build on this work using prospective studies and by exploring whether we can promote those factors that we have shown to encourage growth, so that growth and the positive outcomes for stroke carers are improved and occur sooner after the stroke."
The findings highlight a significant health and social care issue that can potentially be harnessed to develop future therapies and supportive approaches for stroke and related areas of illness such as cancer and heart attack. It is one of the first studies of stroke carers to consider positive and sustaining aspects of caring rather than focusing on its negative aspects e.g. burden, stress and depression.
Chris Clark, UK Director Life After Stroke Services at Stroke Association said:
"Stroke causes an emotional shockwave for stroke survivors and carers alike. All too often carers are left to adjust to their new role alone. This report highlights our belief that a life after stroke is possible with the right information, advice and support.
"Stroke groups provide a valuable opportunity for people to share experiences, regain confidence and learn new skills. The Stroke Association Helpline (0303 303 3100) offers information about these groups and local support services."
Jackie Ashley, a Guardian columnist who recently cared for her husband Andrew Marr, the journalist and political commentator, following his stroke:
"I welcome the report on Posttraumatic growth in Stroke Carers. Being relatively new to this situation, which is changing by the week, I can attest that suddenly being plunged into the role of carer is a traumatic experience.
"But it is not without positive aspects. In particular, being faced with the possibility of death or permanent disability makes the whole family re-evaluate everything. So often, after a traumatic event, the little things that we used to take for granted, from happy occasions with family and friends to beautiful landscapes to heart-warming literature or music can be sources of extreme joy.
"While there is always a sense of loss following a stroke, there can also be a renewed sense of gratitude for what remains and a determination to make the best of the future."
The research was made possible by funding from the Workforce Education and Development Service (Wales) and is published today in the British Journal of Health Psychology, under the title: 'Posttraumatic growth in stroke carers: A comparison of theories.'