Helping the terminally ill check travel off their bucket list

May 8, 2018 by Rob Payne, Edith Cowan University

Researchers from Edith Cowan University (ECU) have begun a research project into the challenges and benefits faced by terminally ill persons hoping to travel.

The project looks at practical barriers to travel, such as access and affordable insurance, and is also focussed on investigating experiences and what travel means to the terminally ill.

"We put off a lot of life goals until we're confronted with health problems, but bucket list items involving travel can become difficult and seem impossible for those with ," said Dr. Greg Willson from ECU's School of Business.

"As a society we don't like to talk about death, but we need to find a more compassionate way to support these people and appreciate their needs."

Dr. Willson was motivated to start the project because of a lack of research in the area and his previous work for Make-A-Wish, where he designed wishes for young people.

"I would meet with kids and listen to what they wanted, and almost all involved some sort of travel, such as a trip to the Gold Coast or to the MCG," he said.

"Travel can boost self-confidence, offer a return to normality and create important and positive memories for the individual, their families and carers – it's very much about dignity."

Benefits for all

The project's first publication is a review of research on health and wellness travel, disability travel and outcomes from initiatives such as asthma camps.

This has provided evidence that holiday-taking can create benefits before, during and after a trip for those in poor health.

For example, the anticipation of travel by children with cancer and asthma resulted in improved coping and mental health.

And research has shown individuals report fewer health complaints and less exhaustion during holidays.

There is also growing scholarly focus on spirituality within tourism that shows travel can be deeply meaningful, transcendent and help develop important connections within an individual's life.

It is also important for those at the coalface.

"Caregiving can have negative consequences, including fatigue, insomnia, depression, anxiety and burnout," Dr. Willson said.

"Most people don't want to sit at home and wait to die, and they want their carers to have a break too."

Challenges to overcome

The research has identified a number of barriers to travel for people with terminal illnesses.

These include: psychological issues (lack of self-confidence, vulnerability and loneliness); environmental barriers (prejudice and intolerance from society); and medical variables (assessing fitness to , healthcare abroad, immunisations and medications).

There are also financial barriers, as well as a hospitality industry that doesn't traditionally cater well for people with disabilities.

"Going forward we need to think about the roles and responsibilities of mainstream tourism organisations and specialised tourism organisations – how can we make a more concerted effort as a society to improve services?"

Dr. Willson points to the Grove Hotel in Bournemouth, UK, as an initiative that works.

The hotel operates solely for those with life-threatening illnesses and their families and carers, offering all the regular hotel amenities, but with 24-hour nursing cover.

"Terminal illness and tourism: A review of current literature and directions for future research' by G. Willson, A.J. McIntosh, A. Morgan and D. Saunders is published in Tourism Recreation Research.

Terminal illness is defined as an advanced stage of disease with an unfavourable prognosis and no known cure; the illness has progressed to a point that recovery or remission is highly improbable, health has declined and death is likely to occur within a specific time frame.

"Some people are terminal but still have years to live – Stephen Hawking lived for more than 50 years after his diagnosis," Dr. Willson said.

"Research has shown that tourists visiting the seaside reported a sense of connection, awesomeness, timelessness and nothingness – all of which helps to put their lives into perspective.

"Leisure activities have been shown to bring a sense of belonging, appreciation, self-worth and accomplishment and help people accept their own death."

The Life-Threatening and Terminal Illness Travel Research Project is ongoing.

Explore further: How to look after someone with a terminal illness

More information: G. Willson et al. Terminal illness and tourism: a review of current literature and directions for future research, Tourism Recreation Research (2018). DOI: 10.1080/02508281.2018.1443053

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