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HEALTH PROMOTION

Right: Some laryngectomees attending a workshop in Tauranga, New Zealand Far right: Laryngectomee tutor demonstrating the use of a Servox to a group of Primary School children and teenagers on Matakana Island, Bay of Plenty, North Island, New Zealand

Victims? - Not a
IF YOU WANT TO • EMPOWER YOUR CLIENTS • IMPLEMENT A NATIONAL STRATEGY LOCALLY • RUN WORKSHOPS

Recommendations in a national cancer strategy led to Fiona Hewerdine and Linda Laugesen getting involved in an antismoking campaign and organising workshops for people with a laryngectomy. Here, they explain how both ventures have empowered clients in a variety of ways.

W

e were recently prompted to examine our work with laryngectomees as a consequence of New Zealand’s cancer and palliative care strategy. The population served by our speech-language therapy team at Tauranga Hospital, situated in the North Island of New Zealand, includes a high proportion of Maori people. The document made recommendations about equity of access for Maori and non-Maori people, as well as enhancing information provision, helping with prevention, ensuring ease of access - particularly in rural areas - and maximising quality of life. We asked ourselves what this meant for us, and how we could enhance the care of our laryngectomy patients in the Bay of Plenty? The outcome was the provision of preventative education to a high-risk population (part 1) and a successful laryngectomy workshop (part 2).

Part 1: Preventative education to a high risk population
One of the strong focuses of New Zealand’s cancer and palliative care strategic document was prevention. As speech-language therapists generally do little ‘preventative’ work, we were not sure whether this was our role or not. However, one of our laryngectomees had voiced an interest in visiting local schools to talk about the health disadvantages of smoking. Charged up by this and our cancer document, we decided to

pilot our first preventative trip. Our target area was a small Maori community, situated on one of the offshore islands in the Bay of Plenty. The island people are almost exclusively Maori; such populations have higher health needs including a younger death rate for males and females than their Pakeha (non-Maori) counterparts, and a very high rate of use of tobacco and other drugs. The purpose of our visit was to educate children at the local school about the potential consequences of smoking, one of which could be laryngectomy. Working with the local Maori support worker, we took one of our laryngectomees (a Servox and surgical voice user) and a Maori speaking speech-language therapist. We worked with three different age groups of children and, while we changed the pitch and tempo of the presentations, across the groups we had a running theme: 1) What does voice mean to us, and how do we use it? 2) How is voice created? Let’s look at some of the anatomy (larynx model used). 3) Let’s see a video of the larynx and the role the voice box plays in the production of speech (Newton’s Apple video). 4) Footage of laryngectomy surgery. We only showed this video to the teenagers and not to the primary school children. For the younger students, we explained what it would be like to have a voice box taken away. With guidance, we had them draw a voice box with the corresponding parts of voice production, and also feel for vocal fold vibration. 5) Introduction of our laryngectomee, who took the floor with confidence and showed the children his Servox device, giving them the opportunity to use it themselves. The students looked at his stoma and heard stories of him inhaling a moth and being very scared. They learned that he could not go surfing anymore and that he had been frightened coming over to the island because he had had to travel by boat. He also would not go out fishing anymore. Fishing is an important part of Maori life, as is singing, so these were two important cultural activities

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bit of it!
that the children understood could be lost through smoking. During his presentation to the students, our laryngectomee successfully played the role of a tutor, an advocate for wellhealth and an ambassador for anti-smoking.

Role models
We only spent 11/2 hours with each class, but the learning they seemed to show, and the insights they had gained from our laryngectomee (see letters in figure 1), made us feel quite strongly that we had affected a preventative measure. We have heard from the Maori worker on the island that a number of parents have been prompted by their children to give up their ‘fags’. This is great! There can be no better teachers and role models than children for their parents and grandparents. On a poignant note, our laryngectomee said to us on the way home, “If I affected one child and stopped them from smoking and getting cancer, my experience as a laryngectomee will have been worthwhile.” We have now been asked back to the island to help promote an anti-smoking campaign for the adult population. This will co-occur with the provision of nicotine patches by the Maori healthcare workers and we are following this with a visit to provide laryngectomy education.

Part 2 - Laryngectomy workshop
Providing a workshop in the management of laryngectomy can be not only an empowering experience for the laryngectomee, but also a uniquely rewarding experience as a speech-language therapist. Titled ‘State of the Art in the Management of Laryngectomy’, our six week workshop was hosted by two speech-language therapists and a well-experienced and vivacious female laryngectomee. Our primary aim of running this New Zealand first workshop was to facilitate an educational opportunity, looking at the latest laryngectomy products on the market from various companies. We also endeavoured to create a real workshop focus by providing the participants with

Figure 1 Feedback

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HEALTH PROMOTION

our laryngectomee successfully played the role of a tutor, an advocate for well-health and an ambassador for anti-smoking

the chance to ‘play’ with a variety of equipment, such as handsfree devices, shower guards, humidification systems and bibs. We wanted to provide access to optimum equipment and then a communication environment to practise, experiment and feel supported. This workshop had no cost to the laryngectomy participants, apart from organising their own transport to and from the venue. As with any type of workshop, adequate planning is imperative. One aspect of planning that we felt contributed to the workshop’s success was meeting with our laryngectomee co-host in the initial stages of our preparation. This allowed us to have insight from a laryngectomee’s perspective. From this initial meeting, we generated a plan of such things as course content, handout materials, suitable videos, equipment to trial, a timetable of events, appropriacy of venue and invitations. As our oldest participant was 87 years of age, we felt it was very important to offer an easy access venue. Our workshop was located in a room on the ground floor of the hospital, with drop-off parking and wheelchair access. We carried out our workshop sessions once a week for the six-week period, with the sessions running for approximately one and half-hours in the morning. They were structured so that each subsequent session built on the previous one, therefore we recommended to participants that they try and commit themselves to attend the full course to gain the most benefit. Carers were also encouraged to attend all six sessions to provide support for their laryngectomee and also for their own education and learning. Course content over the six-week period is in figure 2.

Measurable spin-offs
The workshop really gave us the opportunity to look at the change within our patients. We were delighted by the measurable spin-offs and gains from our laryngectomees in support of each other, the changing self-confidence, and the diversity of roles that these people are now performing. Victims? - not a bit of it. Reflecting on our practice, we had seen our patients take on many active roles (figure 3): 1. Authority and Problem-Solver At the beginning of the course, we had agreed on an equal partnership of those running the course. However, it was not long before our laryngectomee co-host naturally took the lead in guiding and counselling us about our recommendations to the workshop participants. While she was sensitive and respectful of our understanding of anatomy and physiology, our laryngectomee was keen to share her wisdom and to problem-solve with the patients, for their best outcome. 2. Presenter One of our laryngectomees had attended an International Symposium and he agreed to talk about his experiences. It was his observations about not being a victim of cancer that inspired us to reflect on the fact that our laryngectomees are certainly survivors and not victims. 3. Mentor During our six-week period, the amount of coaching and mentoring done by our patients was remarkable. It was quite easy for the speech-language therapists to stand back and the sessions almost ran without our direction, as they provided peer support for each other. 4. Entertainer One might expect laryngectomees to play a passive role in communication; to be able to respond but not to take the floor or the spotlight. We suggested a competition - the completion of a limerick. Almost everybody that entered the competition chose to take the floor themselves and read their own entries. It was quite clear to us that laryngectomees do not have to play a passive role in the interactional process. These were entertainers, people empowered. 5. Nursing care Maori patients have a great respect for the head - it is tapu, which means sacred. Invasion through cancerous surgery of the head and neck can be extremely traumatic for a Maori person. Our workshop participants appeared to be very sensitive to these considerations when they were supporting one another. 6. Peer review The mentoring and care that we had seen extended from the participants was also reflected in their care and intuitive interest and acknowledgement of the carers. It was great to see patients supporting other people’s carers and taking the initial steps of discussing potentially risky or sensitive areas. 7. Inventor Kiwis are renowned for their ingenuity and we saw excellent examples of the personalisation and customisation of equipment. One of our laryngectomees created his own stoma studs, and moulded plastic himself to make the device fit his hands-free equipment. Another of our patients, who was a mechanic, customised his own humidification system with the use of a condom. (This was very successful for the first 20 seconds, until he ran out of air and the condom wouldn’t roll back and allow him to breathe!)

Figure 2 Course content Session One: • Introduction and housekeeping issues • Syllabus discussed and provided as handout • Presentation from Blom-Singer rep and equipment display • Speech-language therapist and co-host laryngectomee presented a candid interview re: use of Blom-Singer hands-free device • Video of Blom-Singer equipment • Demo of application of Blom-Singer hands-free device from co-host laryngectomee Session Two: • Session plan outlined • Presentation on hands-free Provox II device • Candid interview with co-host laryngectomee re: use of Provox II hands-free device • Video of layrngectomee using Provox II hands-free device • Demo application of Provox II hands-free device from co-host laryngectomee • Prompt for participants to bring their own equipment for next session, for example valves, housing, mirror, torch / headlight Session Three: • Session plan outlined • Interactive display on various supplies, including stoma studs, cleaning equipment, laryngectomy tubes, cravats, shower guards • Participants divided into three smaller groups and provided with ‘hands on’ trials of hands-free devices • Ordering of equipment Session Four: • Session plan outlined • Further interactive display on various supplies • Further trials of hands-free devices with individual participants • ‘Chorus coaching’ from co-host laryngectomee during hands-free practice session • Video session of laryngectomy operation Session Five: • Session plan outlined • Troubleshooting • Humidification systems presentation • Experimentation with different hands-free devices Session Six: • Session plan outlined • Further presentation from Blom-Singer rep • Laryngectomee guest speaker presented on international laryngectomy conference • ‘Talkathon’ - limericks, prize giving and certificates of attendance • Evaluation forms

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Figure 3 Multiple roles taken and grown by our laryngectomee victors - a wellness focus

Trainer Problem-solver Speaker Inventor Financial Manager Peer Mentor Preventative Counsellor

Partnership & Team Player Planner

Empowered patient

Authority Mentor Counsellor Nurse

Entertainer

Next time
We’ve reflected on the good, but what about the bad and the ugly? There are several things we would do differently next time. Firstly, we would always make sure we read the labels on the videos carefully. Inadvertently picking up the wrong video, we demonstrated laryngectomy surgery in the middle of morning tea to a group of patients and carers. While three quarters of them were riveted on the edge of their seat, the other quarter of the room were rushing for the sick bowls. A dreadful error, and no forewarning of the atrocious pictures. We also wanted to make a training video for New Zealand of our experience, so we videoed all the sessions. While this was really good for the purpose we had in mind, it would be nice to have had one less thing to do during the sessions. Trying to video tape footage and keep the ball rolling with all the different needs, and also have the time to observe the changes that were going on, needed 20 pairs of eyes, 40 pairs of hands and at least 200 pairs of ears. Additionally, laryngectomy speech volume in a big room can be very difficult to carry; particularly the age groups that we are often working with, who have hearing loss. Therefore, it would have been good to have had a roaming microphone to walk around the group to ensure everyone was heard. A lesson from session one was that, as people arrive, it is helpful to have soft background music, because the room was often too quiet, which delayed people’s feeling of security and hence level of interaction. Our final ‘bad and ugly’ comment comes from the amount of work that is required behind the scenes. Preparation time in the initial set-up stages of the workshop and before each session was probably one of the biggest investments required. Time packing up post-session and dealing with some of the incidental work generated within the sessions was also significant. As it was our intention to allow all the participants to experiment with different gear, this took a huge amount of bookkeeping and auditing. Despite the time and financial cost involved in setting up and running the workshop, we now feel that we have a very usable ‘working document’ that could easily be picked up again at some stage in the future and implemented, without all the initial planning time being required. We have chosen to write this article to demonstrate and reflect on empowerment for our laryngectomy patients. In considering our own goals, we were very keen to identify our workshops as ‘State of the Art’ for laryngectomy rather than

calling them a ‘hands-free group’, in case patients were not able to master hands-free speech. So far, we have made no reference to their level of success, as it is quite incidental that, in fact, all participants acquired hands-free speech. What we actually saw was huge changes in their confidence, personal strength in the new roles that they took on and a hike in their levels of motivation. Really, we have looked at the shift from potential victims to victors - people who have become empowered and succeeded in the battle against head and neck cancer. Fiona Hewerdine is team leader of speech-language therapy and Linda Laugesen a staff speech-language therapist at the Bay of Plenty District Health Board, Tauranga Hospital, Private Bag 12024, Tauranga, New Zealand, tel. 07 579 8785.

Useful reading
Evans, E. (1993) Working with Laryngectomy. Oxon: Winslow Press. Lauder. E. (1997) Self Help for the Laryngectomee. Texas: Lauder Enterprises, Inc.

Resources
• Reference document for cancer control strategy and New Zealand cancer strategic document and palliative care strategy for New Zealand: www.moh.govt.nz. • Living with Laryngectomy, Life as a Laryngectomee and Yes, you can have a new start! are all available from Atos Medical, see www.atosmedical.com. • The video ‘How is my voice different from your voice’ is produced by Newton’s Apple, St Paul, Minnesota, USA, see www.voicecraft.com.au. • A video documenting our laryngectomy workshop is available for £15.00 (inc. VAT) + £5.00 postage. Please contact Fiona Hewerdine at fiona.hewerdine@bopdhb.govt.nz.

It was great to see patients supporting other people’s carers and taking the initial steps of discussing potentially risky or sensitive areas.

• DO I HARNESS THE ENERGY OF CLIENTS TO ENHANCE THE TRAINING I OFFER? • DO I CONSIDER HOW CULTURAL FACTORS CAN HELP ME GET MESSAGES ACROSS? • DO I SEE OPPORTUNITIES FOR A WELLNESS FOCUS IN MY WORK?

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