Adventure in the face of diagnosis: new research supported by MS Australia

The Oceans of Hope journey was the first time a crew of people living with MS circumnavigated the world by yacht. 94 people with MS served as crew members at different points of the 17 month voyage. The yacht set sail from Denmark in June 2014 and visited around 30 ports around the world.

The research study titled, ‘“I can do more than I thought I could”: exploring the online blogs from the Sailing Sclerosis Oceans of Hope journey’ looks at the impact of the Oceans of Hope journey on participants living with MS.

In 2015, MS Australia hosted the Oceans of Hope crew during their visit to Australia.

Lisa Montague, the National Advocacy, Publications and Media Officer from MS Australia says:

‘The anecdotal evidence of the incredible, life-changing benefits of the Oceans of Hope experience, was overwhelming. The MS Australia team thought long and hard about how we could create a lasting legacy from this voyage, that would capture evidence of the impact of the voyage on those involved living with MS, in a scientific way. We approached a small team of researchers in the Faculty of Education at Monash University, a leading Australian university.’

Monash researchers, Janene Swalwell and Felicity Broadbent, used deductive thematic analysis to analyse blogs posted by participants of the voyage. The research was published in the journal, Disability and Rehabilitation in February 2019.

The study identifies 4 major themes across the blogs:

1.       The challenges of the journey

2.       Teamwork and camaraderie that arose from sharing a diagnosis in common

3.       Reframing mindsets as people acknowledged and adjusted to their diagnosis

4.       Empowerment and personal growth with hope rediscovered.

Participants experienced lower levels of depression and reported feelings of empowerment and positive well-being. The study concludes that providing individuals living with MS with opportunities and challenges can lead to numerous psychosocial benefits.

Dr Mikkel Anthonisen, founder of the Oceans of Hope Sailing Sclerosis project, said:

‘The publication of these research findings validates many of the aspirations we set out to achieve with the Oceans of Hope project. Our Mission was to change the perception of MS by showing what is possible when people with a chronic disease are empowered to conquer their individual challenges, by engaging with those whose lives are touched by MS and developing networks as a foundation for life changing behaviours.’

The authors of the report encourage policy makers, funders and healthcare professionals to think creatively when developing programs for individuals living with chronic illnesses.

The study suggests that an MS diagnosis does not need to mean social isolation or a sedentary lifestyle. New opportunities and strong peer support can lead to a better quality of life. These findings support the ‘seven principles to improve quality of life’ published by MSIF.

You can read the full report here.