Adventure therapy proves successful for adolescent survivors of childhood cancers: wilderness journeys for teenage cancer survivors are helping address many of their long-term health issues.
Article Type: Report
Subject: Adventure travel (Health aspects)
Cancer survivors (Care and treatment)
Adolescent medicine (Research)
Cancer (Care and treatment)
Cancer (Management)
Authors: Wynn, Belynda
Frost, Alexandra
Pawson, Paddy
Pub Date: 02/01/2012
Publication: Name: Kai Tiaki: Nursing New Zealand Publisher: New Zealand Nurses' Organisation Audience: Trade Format: Magazine/Journal Subject: Health; Health care industry Copyright: COPYRIGHT 2012 New Zealand Nurses' Organisation ISSN: 1173-2032
Issue: Date: Feb, 2012 Source Volume: 18 Source Issue: 1
Topic: Event Code: 200 Management dynamics; 310 Science & research Computer Subject: Company business management
Product: Product Code: 8000432 Cancer Therapy NAICS Code: 621 Ambulatory Health Care Services
Geographic: Geographic Scope: New Zealand Geographic Code: 8NEWZ New Zealand
Accession Number: 282425953
Full Text: [ILLUSTRATION OMITTED]

The New Zealand Cancer Control Strategy Action Plan 2005-2010 identified the need to "ensure all survivors of childhood and adolescent cancer receive timely and ongoing support and rehabilitation, including the identification of, and intervention in, late effects". (1)

The national late effects assessment programme (LEAP) was started in 2006, to develop appropriate services to address this need within the district health boards (DHBs).

In response to a recognised continuing gap in services, the Christchurch Hospital LEAP team and the adventure therapy (AT) team at Christchurch's St John of God (SJG) Waipuna Hauora Trust started working together, in consultation with numerous other agencies/individuals, to develop a programme of AT for teenagers affected by cancer. This article presents the background, programme description and outcomes for the inaugural New Zealand AT programme for adolescent survivors of childhood cancer.

The developmental needs of adolescents are often last to be addressed when life-saving treatment is a priority. If that life-saving treatment is prolonged and intensive, teenagers can be left with major deficits as they move from dependence through independence to interdependence (ie integrated with society). Even for survivors of childhood cancer who are well provided for with services/resources compared to children with other life-threatening health problems, there is still a gap in relation to addressing their developmental needs. This is becoming more apparent as these teenagers engage in LEAP.

The programme aims to co-ordinate long-term follow-up care for survivors of childhood cancer. Child cancer care centres in Auckland, Wellington and Christchurch now have a LEAP team, comprising a nurse specialist, clinical psychologist and paediatric oncologists, to address the long-term health issues for cancer survivors. These "late effects" are seen in about two thirds of survivors and include a vast range of issues, eg emotional and learning problems, growth and development, heart, kidney and hearing problems. In addition to co-ordinating and accessing appropriate care, the LEAP team provides transitioning services fundamental to the development and well-being of the adolescent.

In April 2008, a presentation on AT by Paddy Pawson from SJG Waipuna youth and community services started a series of conversations and meetings which aimed to fill a gap in services for the LEAP client group. The only other known programme of this kind is in Canada. An organisation called Fondation sur la Pointe des Pieds (On the Tip of the Toes Foundation) has been providing wilderness journeys for teenage cancer survivors since 1996. Full information is available on its website www.pointe-des-pieds.com/.

Adventure therapy is a recognised intervention to enhance self-esteem, self-discovery, and life skills in adolescents. It uses high challenge, high support experiences in natural environments, with philosophies rooted in experiential (reflective) learning and development principles. There is a growing body of research that indicates how effective AT approaches are in working with young people and their families in particular. Studies have demonstrated, statistically and clinically, significant lasting improvements in the mental health and well-being of young adults. (2,3,4,5,6)

The SJG Waipuna Hauora Trust established AT in 1999 with the goal of meeting the developmental needs of young people facing life difficulties. Currently, six committed, passionate young people make up the leadership team that designs and delivers the programme, facilitating six different groups at any one time. The models of practice have universal applicability and have proven popular within the wider youth sector. Waipuna works with this sector, both presenting and delivering programmes, the young people being the biggest stakeholders.

The trust submitted 12 funding applications to various organisations in late 2009. Only one was successful and only for partial funding. It was decided to go ahead anyway, with a revised programme, lots of generous support and resources from Waipuna, and on the smell of an oily rag!

The programme was advertised in the CanTeen newsletter, and about 30 letters were sent out to a target group of LEAP patients. Although initial interest was high, actual numbers attending events was low. Reasons for this included prior engagements and the relatively short notice (school/work commitments) regarding dates set for the wilderness journey. Unfortunately dates were determined by seasonal weather forecasts and limitations around funding.

The wilderness journey begins

Pre-journey activities began in March 2010. Two information evenings outlined the programme's purpose, goals and opportunities, and addressed any questions. The "Up of the toes" video was shown and the paperwork got underway. A family day spent at a ropes course began the process of building relationships, trust and confidence: firstly with games on the ground, then progressing to climbing trees and walking across high ropes with support people below. This day also gave the opportunity to discuss and address parent/caregiver concerns. Informal interviews took place to ensure participation was based on informed choice, and to ensure the selection process had identified young people who fitted the programme, along with the development opportunity being offered.

Five participants and five supporters went on the eight-day wilderness journey in March 2010. The participants were three female and two male adolescents, aged 17 to 21. Their '"late effects" health issues included obesity, restricted mobility, memory and cognitive impairment, balance, vision, hearing problems, hormonal deficiencies and nocturnal enuresis.

The first day consisted of the drive to Kahurangi National Park, the start of the Mt Arthur Tablelands track and a short walk (two km) to Flora Hut. The second day was an eight-hour, 14km walk to Salisbury Lodge, where the group stayed for three nights. The participants made the choice to complete the journey in one day, which was a massive accomplishment for them all, given their individual health challenges and the 12 to 16kg packs each carried! Two of the young women were highly dependent on the supporters and unable to carry their packs for the last stretch.

Days three and four were used for reflection, journaling, and two walks: a three km walk to sink holes and a shorter forest walk that included a reflective exercise. On day five, the participants were advised to start the 14km walk back to Flora Hut ahead of the supporters, who consistently held back. We were mostly just out of sight of, but always within hearing distance of our feisty adolescents!

There was a marked difference in the time taken and overall function of the group on this return journey. They demonstrated confidence, a positive attitude, team work and leadership qualities throughout the day. Day six was the two km walk back to the car park and a drive to Pelorus Sound for two days of reflection, interviews and journaling.

Three participants and four supporters joined in with the follow-up day in late April, a day walk to Boulder Bay near Sumner and back. The celebration took place in the evening, with all five participants, their families, SJG Waipuna staff, four of the supporters plus family members, and representatives from Canteen attending. A DVD of the journey was shown; achievements were acknowledged; certificates, diaries and DVDs were awarded.

Research methods and results

Quantitative and qualitative data gathered during the programme indicates improvements in resilience for our participants. Quantitative data was gathered using Wagnild and Young's 14-item Resilience Scale (RS-14) and a group cohesion measure (the day rating scale) that has been developed in-house by S3G Waipuna. The results were limited by the low number of participants and the minimal time. However, they are typical of data gathered by Waipuna for larger participant groups (n=108), with sustained positive outcomes over longer periods of time.

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Participants completed the RS-14 at the beginning of the wilderness journey ("start") and again at the end. The average score for the five participants for each of the 14 items (covering such issues as independence, personal pride, self esteem and self determination) is graphed above, and shows a trend in increased measures of resilience. Participants were encouraged to complete the day rating, and journal throughout the journey, and various techniques were used by supporters to aid this process. Each participant took part in a 40-minute interview with two supporters during the last day of the journey, after which they were encouraged to complete written reflections. Quotations from participants' journals have been selected to provide examples of personal reflection that took place: "On the 6th day we all walked out and we all felt on top of the world like nothing could stand in our way and it felt greet slowly coming beck to civilization." "Through ell the experiences I have encountered, this week has opened my eyes end mode me feel more like me, a lot better and more comfortable." "I think each day in the forest was different. I enjoyed the freedom." "Sitting in silence reminded me of people in my life who have now passed away." "I think this adventure will help me e lot in life because it has taught me that I can do anything that I believe in." "My steps that I took through this journey, took me to a new place." "I'm glad I did it end to be honest a little proud of myself." "I'll miss everyone. We're ell like a big family now and I'll miss the outdoors. It's so peaceful and mesmerising."

A separate qualitative research study was conducted at the end of the journey, using semi-structured interviews, with four of the five participants. (7) Thematic analysis revealed themes very similar to those emerging from research with participants on a Tip of the Toes journey. (8)

The Frost report (7) identifies a theme of the sense of "being oneself" out in the natural setting: "I felt a little bit different on the journey than I have before. It was really cool feeling free in the nature of it all ... I guess I wouldn't usually be that serial but it was easy out there." "Tramping was good because you don't really have anything else to do so you listen more end concentrate better on whet the person is saying." "I just felt like I could be more like myself in the forest more than when I'm at home. I kind of felt that being out in the open I did actually feel different than who I am at home." "But it's not like a thing that would be majorly obvious to other people, it's not something that people might see, it's just kind of me."

The participants often referred to the impact of the other people on the journey, and of the group relationship: "Other people ere supporting and encouraging me to keep me going and laughter on the way is also helping keep my mind off things, especially my sprained ankle." "The enthusiasm of the group end the getting to places as we walked helped a lot." "It was easy with that group having the support end friendship end having people who you know and trust well made it really easy." "The group is most memorable for me because we were together through some tough times and had a lot of fun."

"A little bit of pride" was an emerging theme: (7) "I suppose I also felt a little bit of pride because I was achieving things, it was pretty awesome. ""I felt really confident because I knew that I could achieve something I'd never done before." "I think I'm a little bit more confident since the journey, just talking to people really."

In the Canadian study, data was collected during the journey, so the emerging themes were more "real time". (8) In the New Zealand study, participants were interviewed about four months after the journey. It's not surprising, then, that returning home from the journey--"back to reality"--was an emerging theme: (7) "It was really weird coming back afterwards. I think we were just kind of more at one with nature so coming back to the city was quite weird because you've been out in the open and then you come back to the city where everything's enclosed. " "When I got home I thought, whoa, there are so many people around! I noticed that people kind of take things for granted, like being able to use phones, using real milk, and texting as the way of interacting with people." "When it was time to leave and come back home I realised that I actually didn't want to! I actually felt quite good being out there in nature. I guess it was sort of like coming back to reality."

Relevance to nursing

The LEAP clinical nurse specialist rote is fairly advanced as regards providing holistic care for the LEAP client group. As an outpatient-based service, it does not involve traditional "bedside" nursing, but includes the provision of youth transition services and nurse-led clinics. Adventure therapy for patients might be seen as stretching the boundaries of nursing but it is, nonetheless, still within an acceptable scope of practice, given the current trend towards autonomous, advanced practitioners using holistic frameworks to monitor and maintain quality of life. (9,10) The two modalities of AT and adolescent nursing both hold the same core goat--healthy adolescents. Combining the two enables a truly holistic approach to achieving that goal.

It is apparent to the LEAP team that adolescent patients often change their behaviour in the hospital setting, taking on the patient rote and thus giving a false impression of their true strengths and challenges following cancer treatment. Working with this group on an AT programme provides a much clearer picture for the health professional to work with, back in the clinic setting.

During the programme, the nurse was able to provide opportunistic information, advice and counselling, as well as monitoring existing health issues and providing (daily!) first aid support.

Discussion and conclusion

This programme has been groundbreaking on several fronts and has been a tremendous privilege to work on. We have strived to meet our own high expectations and the evaluations indicate outcomes that are making a marked difference to the participants, their families and their important extended relationships. The celebration night affirmed our work, as family after family complimented the changes they observed in their young people and the ongoing benefit to themselves and their families.

The focus on growing young leaders, regardless of how they present, is an exciting methodology as we map the further development of the "journeys with cancer survivorship" programme. Delivering AT with young people who are survivors of cancer has been challenging but, at the same time, particularly rewarding. The developmental needs of these young people are a high priority and our groundwork on understanding these needs before leaving played a significant role in planning and in gaining the outcomes achieved.

The young people, along with all those involved, received a growth-enhancing experience and feedback was extremely supportive from families, participants and the various stakeholders involved. While we had some challenges, we found our time together hugely rewarding and exciting as we consider the programme's future potential.

Some immediate changes we would initiate as a direct result of this pilot would be:

* a more robust interview process

* to strengthen the family component

* to better manage the time resource

* to secure more funding to grow the evidence-base.

We are committed to growing this programme due to its integrity and the ability to meet the needs of these young people. Soon after the programme finished, a number of meetings with interested people were held to see how we could fund, sustain and grow this model. There was considerable energy from the families involved to do whatever they could to keep it going. Unfortunately, the significant earthquakes and ongoing seismic activity in Christchurch led to some changes in service provision for SJG Waipuna. Long-term leave for the LEAP nurse has also added to delays in continuing the programme.

This pilot programme was aimed at clients in the Canterbury region, primarily because of the people involved in its inception. However, we believe the programme could be extended to all adolescents affected by any life-threatening/chronic illness in New Zealand.

References

(1) Cancer Control Taskforce (2005) The New Zealand Cancer Control Strategy: Action Plan 2005-2020. Wellington: Ministry of Health.

(2) Hattie, J., Marsh, H., Neill, J. & Richard, G. (1997) Adventure Education and Outward Bound: Out of class experiences that make a tasting difference. Review of Educational Research; 67: 1, pp43-87.

(3) McKenzie, M (2000) How are adventure education program outcomes achieved? A review of the literature. Australian Journal of Outdoor Education; 5: 1, pp19-28.

(4) Mossman, E (2005) What works with youth? An evaluation of the adventure development counselling programme. Unpublished doctoral thesis. University of Canterbury.

(5) Russell, K (2005) Two years later. A qualitative assessment of youth well-being and the role of aftercare in outdoor behavioural healthcare treatment. Child and Youth Care Forum; 34: 3, pp209-244.

(6) Mckay, S., Donaldson, K. & Schroder, R. (2009) Project evaluation: Adventure therapy: Pumanawa atawhai with young people and their families programme. Unpublished report.

(7) Frost, A. {2010) 'Life is like an adventure': Exploring how adventure therapy journeys influence young adult cancer survivors in Aotearoa--New Zealand. Unpublished dissertation.

(8) Stevens, B., Kagan, S., Yamada, J. et al (2004) Adventure Therapy for Adolescents with Cancer. Pediatric Blood Cancer; 43, pp278-284.

(9) Hatchett, R. (2005) Key issues in setting up and running a nurse-led cardiology clinic. Nursing Standard; 20:14-16, pp49-53.

(10) Wang, F.K.Y. & Chung, L.C.Y. (2006) Establishing a definition For a nurse-led clinic: structure, process, and outcome. Journal of Advanced Nursing; 53: 3, pp358-369.

Belynda Wynn, RN, BSc(Hons), MHSci, DipComMan, is the South Island LEAP coordinator/nurse specialist, based in Christchurch Hospital's paediatric department.

Alexandra Frost, BRecEd, is studying towards a teaching qualification.

Paddy Pawson works in adventure therapy development for the St John of God (SJG) Waipuna, a service of the SJG Hauora Trust.
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