the winston churchill memorial · executive summary 5 3. program 10 4. main body introduction 13 5....

THE WINSTON CHURCHILL MEMORIAL

TRUST OF AUSTRALIA

Reported by Bernadeen Trotter 2004 Churchill Fellow

To study nutritional education

of Indigenous people with kidney disease I understand that the Churchill Trust may publish this Report, either hard copy or on the Internet or both, and consent to such publication. I indemnify the Churchill Trust against any loss, costs or damages it may suffer arising out of any claim or proceedings made against the Trust in respect of or arising out of the publication of any Report submitted to the trust and which the Trust places on a website for access over the internet. I also warrant that my Final Report is original and does not infringe the copyright of any person, or contain anything which is, or the incorporation of which into the Final Report is, actionable for defamation, a breach of any privacy law or obligation, breach of confidence, contempt of court, passing-off or contravention of any other private right or of any law. Signed Dated

________________________________________________________________________ Winston Churchill Memorial Trust Fellowship Report by Bernadeen Trotter 1

Bernadeen Trotter 7th January 2006

Table of Contents 1. Introduction and Acknowledgements 4

2. Executive Summary 5

3. Program 10 4. Main Body Introduction 13

5. Main Body Findings Objective 1: Interview renal dietitians on how they

educate Indigenous patients with kidney disease about nutrition and record the emerging themes 5.1. Use of interpreters for Indigenous kidney patients 16 5.2. Cross cultural communication 17 5.3. How to teach Indigenous renal patients 18 5.4. Effective communication 29 5.5. Making a memory-developing beneficial resources 32 5.6. Sharing effective communication strategies 34 5.7. System support for effective communication 35

6. Main Body Findings Objective 2: Review educational materials used to aid nutrition education at each renal unit visited 36

7. Main Body Findings Objective 3: Observe the education process between renal dietitian and Indigenous patient where possible 7.1. Bedside consults 40 7.2. Negotiation 40 7.3. Questioning patient to evaluate understanding 41 7.4. Appropriate level of education 41 7.5. Full explanation 42 7.6. Visual Image 42

8. Recommendations 45 9. References 47


10. Appendix 48

A. Questionnaire for Dietitians working with Indigenous renal patients


1. Introduction and Acknowledgements This report details the findings of a 2004/5 Churchill Fellowship visit to New Zealand, Canada and United States of America to investigate the nutritional education of Indigenous people with kidney disease. The main objectives of this fellowship are to:

1. Interview renal dietitians on how they educate Indigenous patients with kidney disease about nutrition and record the emerging themes.

2. Review educational materials used to aid nutrition education at each

unit visited.

3. Observe the education process between Renal Dietitian and Indigenous patient where possible.

This Fellowship has provided an invaluable experience blending research with travel and professional growth. It could not have been possible without; The Winston Churchill Memorial Trust providing the financial support and respect awarded only to Churchill fellows. and

The financial and emotional support of Northern Territory Renal Services, Royal Darwin Hospital and the Nutrition and Dietetics Department. and

The support of the ‘Sharing True Stories’ project Part B participants who fuelled the fire, to share with others the educational resources developed and to see if any other renal service were doing it any better. and

Thank you to Gill Gorham for encouraging me to apply in the first place. Thank you to Melinda Flack, Bahvini Patel, Anne Lowell, Jeannie Devitt, Dr Paul Lawton and Vikki Wearne for their guidance along the way.


2. Executive Summary Name: Bernadeen Trotter Position: Renal Dietitian

Northern Territory Renal Services

Address: P O Box 41326 Casuarina NT 0810 Australia

Contact: Ph 08 89228727

Fax 08 89227709 Email: [email protected]

Fellowship Objective: To investigate the nutritional education of

Indigenous people with kidney disease.

Fellowship Highlights Wellington Hospital, New Zealand – Sighting bilingual posters teaching staff how to converse with Indigenous patients. Middlemore Hospital, New Zealand – A policy of “no patient resources to be developed without patient consultation”. Watching dialysis patients play Bingo using high Potassium food pictures. Gila River Dialysis East, Arizona – Visiting the first Native American Certified by CMS (like Medicare) Dialysis Unit in the world. Renal Care Group, San Carlos, Arizona – Listening to a Native American dialysis patient comment on the ‘Sharing True Stories’, educational resources especially as she noticed arteries were represented in red and veins in blue. The Dialysis Unit, Albuquerque, New Mexico - Visiting a Jemez Pueblo man with Chronic Kidney Disease in his home. Being inspired by a creative Dietitian who makes her own Indigenous food models.


mailto:[email protected]

Renal Care Group, Anchorage – Witnessing the interest story methodology raised amongst renal staff and realising no other renal unit had developed resources using this method. Also learning of traditional Alaskan foods like Candlefish and Eskimo Ice Cream (sugar and Reindeer fat) Thunder Bay Regional Health Sciences Centre, Ontario – Observing the Dietitian work closely with the Native Liaison who speaks three languages Ojibwa and Ojib Cree and Cree. Health Sciences Centre, Winnipeg, Canada – Energised by an enthusiastic Renal Dietitian with over 20 years experience. Aboriginal Diabetes Service, British Columbia, Canada- Being invited to a Coast Salish Community Luncheon and participating in a diabetes sharing circle. Findings Objective 1: Interview renal dietitians on how they educate Indigenous patients with kidney disease about nutrition and record the emerging themes 1. Interpreters are used infrequently and family members are often asked to

interpret. Trained Indigenous interpreters are critical for effective communication in Indigenous languages.

2. Cross-cultural communication is limited in dietetic training and is often

learnt on the job. Staff orientation could include Indigenous food as an element of culture. Good education programs on communication are available through international dialysis companies and organisations.

3. How to teach Indigenous patients? Relationships are the key to changing

Indigenous behavior. Food models are useful but limited if people eat composite ‘one pot meals’. Food packets are localized and easy for Indigenous patients to recognize. Future patient educational material should reflect consistent messages through chronic disease pathways i.e. Diabetes through to Chronic Kidney Disease.

Further discussion around the use of the hand jive as a teaching tool with


Public Health Nutritionists and Health Workers is warranted. A visual image or story is best! Laboratory report cards are meaningful to some Indigenous patients. It is important not to assume prior numeracy skills. Creative ideas to educate and motivate patients like taste tests, role plays, Potassium Bingo, board games, flash cards and trade fares all have merit for Indigenous people. Use of traditional foods words and names help traditionalise education and make it more meaningful to Indigenous patients. Identifying what motivates Indigenous patients to embrace their health is key to successful outcomes i.e. the value of them to their family. Repetition and delivery of education in small blocks of information is common. Take advantage of teachable moments when they arise.

4. Factors which may facilitate effective communication; • Use an interpreter, • Identify if patient is ready to receive information • Ensure a relaxed environment • Show empathy, be aware of different patient values,

Indications when communication may be effective; • Patient or family asks questions. • Patient is able to verbalise their understanding of education. • Patient makes changes • Patient invites Health Worker to home or land.

5. Educational material for Indigenous patients should include; • Making a mental picture • Utilising large font, • Using traditional foods and food words • Coordinating coloured paper for different topics. • Being consistent with other patient handouts i.e. diabetes • Using audio visual media • Evaluating through pilots and critical appraisal.


• Developing patient oriented resources i.e. a combined low Potassium and low Phosphate food list

• Only developing patient educational material in consultation with Indigenous people.

Most Renal Dietitians spoken with shared information in the usual ways of phone, email, meetings and presentations to other team members and colleagues. Other opportunities to share communication strategies exist through shared computer access drives, professional list serves i.e. www.renalrd.com and teleconferences. Policy supports the process for effective communication. Staff mentorship’s and staff rotation promote and support effective communication.

Findings: Objective 2: Review educational materials used to aid nutrition education at each renal unit visited 1. Effective education materials all appear to embrace

• ‘Plain English’ • Use of colour • Liberal use of graphics

Posters with common dialogue in Indigenous languages can assist staff and patients to converse. The list serve www.renalrd.com is a good source of patient handouts that have been critically appraised by renal dietitians.

Findings Objective 3: Observe the education process between renal dietitian and Indigenous patient where possible 1. Most education sessions observed took place at the bed or chair side in

the dialysis facility. Consult rooms are ideal if available. 2. Negotiating is part of every education session. 3. Throughout education sessions renal dietitians tried to evaluate patient

understanding by saying, “Do you know why I am saying this? I don’t want you to eat all these at once”.


http://www.renalrd.com/

4. Gauging the appropriate level to deliver education is difficult. 5. Full explanations are invaluable i.e. “The kidneys are the washing

machine of the body. As a result when the kidney cleans the blood the kidney throws out all the trash and it becomes urine. Now all the clean blood goes in into the blood. And this goes on over and over all day long. This is a normal kidney”

6. Individual ways of creating visual images is evident i.e. ”What fits in

your hand is the right size of meat, same as 3 slices of meat. Easy way to remember as you has always got your hand with you!” Another visual demonstration is a breaking a piece of chalk in two to demonstrate weak bones due to Osteomalacia.

7. One dietitian commented, “The hardest thing to understand is the

components of the blood, the vitamins and minerals; they can’t visualize and can’t believe all these things are in the blood. There are no words for Potassium. I try to explain and then actually use the word i.e. Potassium”.

Dissemination and Implementation • Present findings to Northern Territory Renal Services joint Alice

Springs and Darwin meeting April 2006. • Present findings to Dietitians in the Northern Territory through the

Continued Professional Development Program March 2006. • Present findings to staff and patients at Nightcliff Renal Unit and

Renal Ward Royal Darwin Hospital. • Support Northern Territory Dietitians to incorporate

findings/conclusions into policy where appropriate.

• Submit article to Darwin Hospital newsletter, Dietitians Association of Australia newsletter and Renal Society of Australasia Newsletter.


3. Program

NEW ZEALAND Olwyn King, Dietitian 26-27th September Capital and Coast District Health Board/Upoko Ki Te Uru Hauora Wellington Hospital Riddiford Street Private Bag 7902 Wellington South New Zealand [email protected] Sarah Lucas, Clinical Dietitian 28-30th September Counties Manukau District Health Board Middlemore Hospital Private Bag 93311 Otahuhu Auckland New Zealand [email protected] Elaine Chong, Clinical Dietitian [email protected]

UNITED STATES OF AMERICA Louisa Szarek, M.Ed.,RD 5th and 7th October Gila River Care Corporation, Arizona Gila River Dialysis East PO Box 2176 Sacaton, Arizona 85247 [email protected] Zita Kabok, Dialysis Social Worker [email protected]







Brenda Murphy, Med RD 6th October Renal Care Group, San Carlos 1750 South Mesa Drive Suite110 Mesa, Arizona 85210-6213 [email protected] Patricia Weatherman, MS.,RD., LD 9-11th October Albuquerque, New Mexico Dialysis Clinic Inc (a non profit corporation) 4045 Jackie Road Rio Rancho, New Mexico 87124 [email protected] Debra Mestas, RD., LD 13-17th October Renal Care Group, Anchorage 3950 Laurel Street Anchorage, Alaska 99508 [email protected] Alison Hull [email protected]

CANADA John Pilgrim, Bsc.,RD, Chief Clinical and Renal Dietitian 19-21st October Thunder Bay Regional Health Sciences Centre 980 Oliver Road Thunder Bay Ontario Canada P7B6V4 [email protected] Kanita, Native Liaison person Mary Wrigley Renal Outpatient Coordinator







[email protected] Pat Hill, Msc., RD, CSR, Renal Nutritionist 22-25th October GA619-820 Sherbrook Street Health Sciences Centre Winnipeg Manitoba, Canada R3A 1R9 [email protected] Rita Flett Spiritual Care Specialist [email protected] Dr David Foster Director Clinical Science Liaison Genzyme USA “An update on renal Osteodystrophy and Cardiovascular Disease”, Dimensions in Dialysis Conference 26-28th October Portland, Oregon, USA Fiona Devereaux, Community Nutritionist 31st Oct- 7th Nov Diabetes Team, Aboriginal Health Royal Jubilee Hospital Rm 32 Begbie Hall Victoria British Columbia, Canada [email protected] Sue Schaefer, Diabetes Educator [email protected]







4. Main Body – Introduction

4.1. Background Aboriginal Australians have among the highest reported incidence of treated kidney disease in the world. Mortality for patients on dialysis worldwide ranges between 17-25% per year, which is approximately 10 to 30 fold that of the general populationi,ii In the Aboriginal End Stage Renal Disease population mortality is even greater still, being approximately 1.5 – 2 times greater than that of the non-Aboriginal End Stage Renal Disease groupiii. Dialysis patients are asked to adhere to a very difficult treatment regimen including fluid and diet restrictions. Many haemodialysis patients fail to adhere to their prescribed treatment. It is necessary for patients to adhere to the prescribed regimen for optimal health and well-being. More research has been reported on the demographics of non-complaint patients than on effective methods that help patients improve adherence to the treatment regimeniv. Patient education is a form of communication. Effective communication correlates with improved health outcomes. Conversely, professional language and cultural barriers can impede communicationv. In 2001 ‘Sharing True Stories’, participatory action research identified, miscommunication in patient education at Nightcliff Renal Unit, Darwin Australia. Miscommunication often went unrecognised between Aboriginal patients with kidney disease and health staff workers. A shared understanding of key biomedical concepts was rarely achieved. Trained interpreters provide only a partial solution and fundamental change is required for Aboriginal patients to have significant input into the management of their illness. Educational resources and processes are needed to facilitate a shared understandingvi In 2002 in response to the research, stage two of ‘Sharing the True Stories’ focused on strategies to improve miscommunication. In a working party of


Indigenous patients, interpreters and health staff patient education resources were developed. Using story methodology and ‘plain English’ three stories were developed, ‘The Respiratory Story’, ‘Circulation Story’ and ‘The Kidney Story’. In addition several DVDs were produced, ‘Using Interpreters’, ‘Cycad Bread Story’ (metaphor for dialysis) and ‘Home Dialysis Training’. i Levey AS, Beto JA, Coronado BE, et al. controlling the epidemic of cardiovascular disease in chronic renal disease: what do we know? What do we need to learn? Where do we go from here? National Kidney Foundation Task Force on Cardiovascular Disease. Am J Kidney Dis 1998; 32:853-906. ii Sarnak MJ, Levey AS. Cardiovascular disease and chronic renal disease: a new paradigm. Am J Kidney Dis 2000; 35:S117-31. iii Spencer JL, Silva DT, Snelling P, Hoy WE. An epidemic of renal failure among Australian Aboriginals. Med J Aust 1998; 168:537-41. iv Morgan L. A decade review of: methods to improve adherence to the treatment regimen among haemodialysis patients. Nephrol Nurs J 2000; 27(3): 299-304 v Devitt J. Producing renal patient education material in Aboriginal languages. Project CRC for Aboriginal and Tropical Health Darwin, Northern Territory; 2003 unpublished iv Cass A et al. Sharing the true stories: improving communication between Aboriginals patients and healthcare workers. Med J Aust 2002; 176:466-47.

4.2. Methodology In early 2004 an advertisement was placed on www.renalrd.com, an international professional list serve calling for interested Renal Dietitians who worked predominantly with Indigenous people or people with low literacy level skills with kidney disease. Contact was made with Renal Dietitians working with Maori, South Pacific Islander, Native American, Native Alaskan and First Nation peoples. The renal units visited are by no means exhaustive or representative of Indigenous kidney patients but a ‘snap shot’ of other renal dietitians who work in this challenging area of Indigenous nutrition education. ________________________________________________________________________ Winston Churchill Memorial Trust Fellowship Report by Bernadeen Trotter 14


Each unit visited was shown a 30-45 minute power point presentation on ‘Sharing the True Stories’ research. The three ‘plain English’ story flip charts were distributed and one or more of the DVDs screened. Eight to twelve renal staff (Dietitians, Nurses, Technicians, Social Workers, and Native Liaison persons) attended each presentation and were very enthusiastic about the research and how relevant story telling was to the Indigenous patients they worked with. This sharing environment set the scene for the information to be collected for this Fellowship. Nine renal dietitians were interviewed and their responses audiotaped. See Appendix 1 for informal questionnaire used. Images of educational materials and aids utilised with Indigenous patients were captured by digital photography. Consent was given to audiotape two educational sessions between dietitian and patient. Two other education sessions were observed and notes taken. One education session with consent was videotaped.


5. Main Body Findings Objective 1: Interview renal dietitians on how they educate Indigenous patients with kidney disease about nutrition and record the emerging themes.

5.1. Use of interpreters for Indigenous kidney patients Formal interpreters are available in most settings and most languages but not often used for Indigenous patients. For example in New Zealand, renal dietitians could not recall a Maori patient requesting an interpreter because they mostly spoke English. The New Zealand the ‘Treaty of Waitangi’ states it is every Maoris’ right to have information provided in Maori and there is a trend towards younger people speaking Te Reo Maori, the Maori language Interestingly the ‘Treaty of Waitangi’ does not include the growing South Pacific Island population and this precipitates inequality between two minority groups. In New Mexico, interpreters are rare as the Pima language is termed a ‘dying language’. Pima is being reintroduced into schools to preserve this language. Language was age related with less younger Indigenous people currently speaking their native tongue. Most Indigenous people in renal units visited appeared more assimilated (own thoughts) into the larger community than Indigenous Australians in the Northern Territory. Often family members are called upon to interpret. One school of thought is to use family members because someone with renal disease affects the whole family. However there is wide spread concern amongst renal dietitians over the accuracy of interpreting by family members. Family members may not understand or translate exactly what is said. There are certain words used in dialysis that do not exist in other languages. Northern Territory Renal Services encourage the use of interpreters not only for translating effectively to the patient but interpreting what Indigenous patients which to convey in their preferred language. In some renal units, Renal Technicians, Social Workers and Native Liaison


persons act as interpreters. In San Carlos, Arizona all the dialysis technicians are from the Apache tribe and they interpret for patients as required. These people are not trained interpreters but are familiar with dialysis terminology, which often-trained interpreters are poorly versed. Interpreters engaged in work with Northern Territory Renal Services are formally trained and mentored in renal disease by patient educators when staff is available. The unique Native Liaison staff member in Thunder Bay, Ontario acts in a wide role not only interpreting language, but also interpreting culturally how things will be viewed by Indigenous people. In San Carlos, Arizona, Community Health Resource people who are tribally employed and speak their native language, help bridge the gap and visit patients in their homes. In Anchorage, Alaska ‘language line’ allows a three-way telephone conversation between patient, family and health worker. There is a trend to ask patients what language they would like to speak in and to keep this on file. More and more staff are asking patients which language they prefer to learn in and how do they prefer to learn or receive information.

5.1.1. Findings Interpreters are used infrequently and family members are often asked to interpret. Trained Indigenous interpreters are critical for effective communication in Indigenous languages.

5.2. Cross cultural communication Most of the renal dietitians interviewed felt their professional training had not included adequate cultural communication. The same could be said (own thoughts) for Australian trained Dietitians. Indigenous patients are often at the lower end of the socioeconomic scale and health staff are often ill equipped to address anxiety and depression that accompany chronic disease. As a result many renal dietitians reported that much of their cultural communication skills had been gained on the job. Cultural communication is often included in requests for training as part of an individual’s annual appraisal i.e. to attend a Maori or South Pacific Island study day.


About half the renal dietitians interviewed reported ‘culture’ was included in their initial orientation. In Wellington, New Zealand of a three-day orientation program about three quarters of a day is spent on Maori culture and the ‘Treaty of Waitangi’. The cultural component of orientation is general and considering how interwoven food and culture is, Wellington Hospital Dietetics Department approached Maori health workers to speak on food and culture and how dietitians should be acknowledging and respecting food. In Darwin, health staff (own thoughts) are invited to attend a full day excursion with an Indigenous worker to collect Indigenous foods from the land. This is a unique and positive experience but not all staff are able to attend this physically enduring excursion. The Renal Care Group, San Carlos, Arizona referred to their vendors (company suppliers) as providers of good education programs. Abbott Laboratories produce a video called ‘Effectively Coaching Patients’ although not specific to Indigenous people. The American Medical Association produce a DVD to increase awareness of literacy, showing something as simple as hypertension, where the patient thought hypertension was a kind of ‘hyper’ (high blood sugar) and did not understand hypertension was another term for high blood pressure.

5.2.1. Findings Cross-cultural communication is limited in dietetic training and is most often learnt on the job. Staff orientation could include Indigenous food as a component of culture. Approaching Indigenous health workers to speak on food and culture is a great initiative. Good education programs on communication exist through international dialysis companies and organisations.

5.3. How to teach Indigenous renal patients?

5.3.1. Build rapport It is very evident that building rapport with Indigenous patients is paramount. Visiting other renal units has only confirmed the importance of addressing what is important to the patient first before launching into education. What a patient wants to talk about may have nothing to do with nutrition but it needs to be discussed before the patient can move on.


A dietitian in Alaska said, “We call it a dance and there are social niceties to be observed and random talk about village and weather and how one feels about the whole process”. Another dietitian in Canada referred to it as,” Not just chitchat, its establishing lines of communication and you learn from these encounters. Its relationships, as soon as we have good relationships you can see the shift”.

5.3.1.1. Findings Build rapport before attempting to educate. Relationships are the key to changing Indigenous behavior.

5.3.2. Food models Every dietitian interviewed said they used food models in some capacity. Mostly the commercial plastic food models marketed by Nasco which is also what many Australian Dietitians utilise. They are expensive and do not represent Indigenous foods well. Food models are excellent for education, especially portion sizes but they have their limitations when people eat ‘one pot meals’ i.e. South Pacific Islanders in New Zealand. Food models represent individual foods and Indigenous people often eat a bowl of mixed foods.

The other side of food models is they can be distracting due to their rubbery texture and appearance and can make it difficult to maintain the focus of the consult. In Albuquerque, New Mexico, the renal dietitian uses paper cut out food models. They are colour photographs of food on laminated cardboard that are visually appealing. The National Dairy Council of America has these paper food models for sale. The same renal dietitian produced her own Indigenous food models using saw dust; glue and paint which are very effective see Figure.1


Figure 1 Homemade Indigenous food models Life size, portion controlled, coloured food photographs are used for group education sessions in Auckland, New Zealand. The food photographs are not specific for renal patients but there are plans to develop renal specific photographs, pending cost.

5.3.2.1. Findings Food models are universal and well utilised. They often represent individual foods, which is limiting when people eat composite ‘one pot meals’. Indigenous food models are poorly represented but be creative make your own!

5.3.3. Food Packets Packets and tins of local food really enhance the quality of dietary information gathered from Indigenous patients. Even when Indigenous patients speak English they may not know all the English words for different foods. For example South Pacific Islanders, refer to pilchards as something other them pilchards but when shown a tin of pilchards they report, “Oh yes I have that”. In Auckland, New Zealand they have taken food packets a step further to demonstrate which foods are high in Phosphate and should be avoided by patients with kidney disease. This consists of three coloured boxes, red, yellow and green, the same as a traffic light. Foods high in Phosphate are found in the red box, foods moderate in Phosphate are found in the yellow box and so on. This is used for individual and group education sessions. A creative diabetes dietitian from British Columbia, Canada displayed the


overwhelming salt content of fried instant noodles (i.e. 2 minute noodles) through a proportionate number of salt sachets on a plate, see Figure 2

Figure 2: Representation of salt content of food using salt sachets

The amount of sugar in a soft drink is displayed in a similar creative way by spooning the equivalent quantity of table sugar into a clear, empty soft drink bottle or using sugar sachets.

5.3.3.1. Findings Food packets are localized and easier for Indigenous patients to recognize

5.3.4. The Plate Model The plate model is well utilized in New Zealand and Canada as one dietitian said, “People eat a meal, not particular food or nutrients”. Many renal patients are diabetic (often 40% or more) and have being exposed to the plate model in diabetes education sessions. The plate model used in diabetes recommends ½ plate of vegetables, ¼ meat and ¼ starch. It is a visual tool where patients and dietitians can build a meal together with food models on a demonstration plate as an education exercise.

5.3.4.1. Findings Future patient educational material should reflect consistent messages through chronic disease pathways i.e. Diabetes through to Chronic Kidney Disease.

5.3.5. Hand Gestures In British Columbia, Canada the hand jive, a tool used in diabetes education ________________________________________________________________________ Winston Churchill Memorial Trust Fellowship Report by Bernadeen Trotter 21

is popular. A closed hand or fist is how much carbohydrate is recommended at the main meal, one cupped hand is how much fruit is recommended and two cupped hands is how much vegetable is recommended at the main meal. One dietitian said “I have people shaking their fist at me, so they have got that idea, that’s the amount of starch to have at a meal”. Another way to use the hand jive is to hold the fist over pictures of food, especially at the end of an education session to evaluate patients understanding. Karen Graham illustrates the hand jive in ‘Meals for Good Health’. Other hand gestures include the palm of the hand representing three ounces (85gm) of meat. A matchbox represents one-ounce (30gm) portion of cheese. These are also used in Australia. Some pictures taken from Linda McCann’s book ‘Simple but Sufficient Nutritional Assessment’ include, a medium serve of fruit is about the size as a tennis ball and one tablespoon of margarine is the size of the tip of the thumb.

5.3.5.1. Findings The hand jive appears to be successful with Indigenous patients with diabetes. Further discussion around the use of the hand jive with Public Health Nutritionists and Health Workers in the Northern Territory is warranted.

5.3.6. Pictures speak a thousand words This was captured by the quote from a renal dietitian in Albuquerque, New Mexico, “Pictures speak a thousand words, making the memory is best, you cannot go with formal books and paper because they don’t care. That’s not the way they learn”. This seems to be true for many Indigenous patients There is often (own thoughts) no place in the homes of Indigenous people for paper handouts, written information is rarely filed away for future reference. It’s visual images or a verbal story that Indigenous patients remember best.

5.3.6.1. Findings A visual image or story is best! Do not rely on written educational material alone.


5.3.7. Laboratory Report Cards Most dietitians interviewed reported using laboratory report cards to feedback to patients their monthly blood pathology results. The same goes for the Northern Territory but there is concern (own thoughts) whether Indigenous patients benefit from this type of information. To understand the report card requires a high level of numeracy and literacy.

One renal dietitian felt patients may well not understand levels required for serum Albumin, but if delivered in an encouraging voice it could convey a positive message. Each dietitian delivers results differently. One Dietitian said, “I say to them these labs are good they are right in the middle and I'll show them physically, if they can read. I’ll always read them the range and point to their numbers”. It is important not to assume prior understanding i.e. of numbers and to tailor information to patient’s perceived comprehension. A dietitian in Arizona felt, “It is effective (the laboratory report card) for some things and they may understand it at the moment, but I don’t know if they know it cold (rate learn). I don’t think it’s in the back of their mind”.

5.3.7.1. Findings Laboratory report cards are meaningful to some Indigenous patients. It is important not to assume prior understanding.

5.3.8. Learning by seeing, hearing and doing The Renal Care Group, San Carlos, Arizona offer patient’s products to taste test. Patients let staff know if they like products with a smiley face stamp. A handout shows a picture of the product so patients can recognize it in the supermarket, its price and why it is good for them. This unit has tried protein powders mixed into applesauce to increase protein intake in malnourished patients (apple sauce is popular!).

Role-plays are a great way to engage a group. In Victoria, British Columbia, Canada, Mrs. Pudding (played by the Diabetes Educator) goes to visit Mrs. Green, the Dietitian. This gives the patients an alias, they can relate to in Mrs. Pudding who is overweight and diabetic and finds it hard to change what she eats.


In Auckland, New Zealand observation of the renal dietitian playing ‘Potassium Bingo’ with patients was a great experience see Figure 3. The haemodialysis patients were familiar with the game and it brought up many foods that they did not realise were high in Potassium. The patients talk to each other and say, “Oh do you eat that? Oh I do this”, thus confirming the new information. Patients do not need to speak English to play, just look for a picture match. They also play a board game with dice, based on reducing high Phosphate foods.

Figure 3: Patient playing Potassium Bingo Learning by demonstration was another education method raised. A dietitian in Alaska said, “Mostly I use concrete things, if I’m talking about protein supplements I bring out the can, show them the scoop and walk them through it”. ‘Flash cards’ made by Genzyme were widely available in the places visited, see Figure 4. These are larger then playing cards with a picture of a high Phosphate food on one side and an appropriate low Phosphate alternative on the other. The food pictures are ‘American type’ foods but with modification could be utilised in Australia. Commercially produced educational aids such as these are lacking in Australia. With guidance dialysis companies could produce these educational aids for Indigenous people and people with low literacy level skills.


Figure 4: Flash Cards with a low Phosphate alternative food on the back While in Victoria, British Columbia, Canada an invitation was issued to attend a community luncheon. The community hall was set up as a trade fare Community members walked around the different service providers stands and asked questions and had their blood pressure and blood glucose checked. At the dietitian stand along with many of the educational aids, already mentioned, was the opportunity to play a ‘jeopardy’ type game. True or false questions were designed around the topic i.e. Diabetes and diet. If people answered correctly a small prize was awarded. The prizes were usually company donations. The trade fare finished with a ‘diabetic sharing circle’. A small stone was passed from hand to hand around a seated circle of participants. Whoever had the stone in their hand had the attention of the group and could speak of their diabetic experience. This was a very powerful exercise in trust and sharing. This is similar (own thoughts) to the sharing experience that happens when collecting bush tucker with Indigenous people in the Northern Territory.

5.3.8.1. Findings Creative ideas to educate and motivate like taste tests, role plays, Bingo, board games, flash cards and Trade Fairs all have merit for Indigenous patients.

5.3.9. Traditionalise and individualise education


Many renal dietitians spoke of traditional foods. Using Indigenous words for food where possible shows (own thoughts) a willingness to learn and respect

for traditional food. This also extends to the use of Indigenous names. One of the successful outcomes of the ‘Sharing the True Stories’ research conducted at Nightcliff Renal Unit, Darwin was the introduction of Indigenous names to medical records This is opposed to an ‘English’ name provided by patients in an effort to conform to a predominant English spoken medical system. In Albuquerque, New Mexico the renal dietitian had a similar experience when, “A patients’ eyes lit up when I used the correct pronunciation of his name. If you acknowledge who they are and I do respect who they are, they soon know, they feel it, its part of your relationship building and education process”. A common problem amongst the dietitians spoken with is the struggle to find what motivates Indigenous people to embrace their own health. The renal dietitian in Winnipeg, Manitoba, Canada, supported this with, “It’s not acceptable to ask someone to do something because I said so; you need to get back to why they need to do it and what is in it for them”. In Anchorage, Alaska the renal dietitian caring for peritoneal dialysis patients said, “I talk about the value of them to their family and this is to help them keep their place in their family and remain valuable, as an example, as an elder, as someone who is able to help their other family members get along, if they are healthy that’s a real good way they can help their family”. In Anchorage, Alaska prior to peritoneal dialysis patients returning home the renal dietitian discusses a realistic scenario in their life. She says “lets pretend your going home to make dinner for the first time, lets walk through that and think of the questions you’d be asking me as if I was standing there”. This individualises the information and supports the patient to troubleshoot.

5.3.9.1. Findings Use of traditional food words and names helps traditionalise education and make it more meaningful to Indigenous patients. Identifying what motivates Indigenous patients to embrace their health is key to successful outcomes i.e. the value of them to their family.


5.3.10. Teachable moments A common frustration for many renal dietitians spoken with is reteaching dietary information. There is a lot of repetition i.e. “You don’t teach one person in one time”. Often each education is a building block around the same theme but maybe from a different angle. Each time more information can be presented and built onto existing knowledge. “Education is often delivered in small pieces”,” We work on one thing at a time and take baby steps in our unit”, were some of the comments from the dietitians. The Aboriginal Diabetes service in Victoria, British Columbia, sends birthday cards to their patients encompassing educational information. Fridge magnets produced by one of the dialysis companies depicting meat serve sizes is another way of reinforcing information. Dialysis companies produce key chain holders and pill boxes which are useful for patients with poorly controlled Phosphate levels, especially men as it is something they can carry their medication and keep it on their person. Teachable moments come in all shapes and sizes. An advertisement billboard in Winnipeg, Manitoba, Canada promoted Aboriginal TV, a source of health education. In Arizona an Apache radio station broadcasts a series of 30 minute ‘outbreak sessions’ on positive steps to optimal health.

In San Carlos, Arizona the renal unit was involved in a fluid awareness campaign. The renal dietitian described it as “Once a week for four weeks we had a topic related to fluid. Every clinic was expected to do a lobby display, potential action talk and get staff involved. One week we did saline bags, another we had six types of cups and you had to guess how many ounces? The patients put their name in a hat and we did some small prize drawings. Then we put them on display in the lobby and showed this is how much you need and this is how much each cup holds. Another session was on salt. We noticed due to heightened awareness an improvement in fluid overload but now we are not talking fluid every week we are slipping back into habits and unless they feel awful there is no motivation to change”.

The same renal unit in Arizona is involved in the development of the ‘Right Start Program’. This will be launched at the next American Society of


Nephrology conference in 2006. It is a program aimed at educational intervention in the first three months of dialysis. Nursing, Dietitians and Social Workers are all involved and it is worth following up on www.asn-online.org.

5.3.10.1. Findings Repetition and delivery of education in small blocks of information is common. Take advantage of teachable moments when they arise. For better results involve renal nurses and patient care assistants in coordinated educational campaigns i.e. fluid awareness. Take advantage of education promotions through local radio and TV.


5.4. Effective communication Another common problem amongst dietitians spoken with, is knowing when communication is effective with Indigenous patients. The table below is not exhaustive but is a way of presenting some practical tips for facilitating effective communication and also indications when communication may be effective.

What facilitates effective

communication?

Examples from dietitians and staff visited

Use an interpreter In the Renal Care Group, San Carlos, the Social Worker speaks Apache and she reports a common experience is patients saying “Oh that’s what its all about now I can do it” when the information is explained in their language.

Check patient is ready for information

“It makes no sense to alienate the patient from you if you continue to talk about what they may perceive as nonsense at that point” “When you have their ‘buy-in’, you can see that you have connected”

Patient is not uraemic “It’s not appropriate or effective when a patient is about to start haemodialysis and is uraemic. So the best time is when patients are well, less uraemic ‘fuzzy’, in an educational mode”. “I have learn’t not to teach them in the first week, they are so scared, they are going to die, they’ll loose their blood, someone is going to hurt them, its going to be painful”

Relaxed environment “Whatever it is that makes people feel comfortable and different things make different cultures feel welcome”.


Two dietitians spoken with avoid seeing patients on dialysis and make appointments for them outside dialysis times. Another dietitian teaches patients in a community facility, “a more relaxed environment”. “I sit out there (in waiting area/lobby) with the patients while they are waiting and I see them on a human level all the time” “Natives have a sense of humor, I try to inject some humor as it increases their comfort level”

Show empathy “Empathy is the magic word in education and empathy that you bring to your set of skills”. “Its not a pill taking culture (Native Alaskans), patients will say my body doesn’t’t like it. I empathise the importance but we have started to get very blunt with them that it (compliance) does make a difference to survival”.

Be aware of different patient values

“Communication is two way, it’s for them to tell us what they would like as well. Some Maori are urban or rural and are from different tribes, they come with different values. In some tribes a woman has more manna (self prestige) then others”.

Indications when communication may be effective

Examples from Dietitians and staff visited

Patient feedback “You explained that really well, thank you” (said patient), which has been really good because you don’t always get that”.

Family/patient asks questions

“The only feedback I get is from family members who will ask a question, then I know things are being processed”


Patient can verbalise what they have understood

“I ask them to either repeat what I have said afterwards, not just do you understand? But what are the main things you may change after we have talked today? Or what might you go away and buy in your shopping? To get an idea, how effective the session has been” “We went over this information now lets, you tell me? We try and test them without making them feel bad about literacy”.

Patient makes changes “I guess the ultimate marker is they have come back and have made some changes”. “If things are improving we’ll ask what you are doing to make this better.”

Being invited to patients home/land

“For me personally being invited onto a Marae (a Maori meeting place) is the biggest compliment”.

5.4.1. Findings It is difficult to know when you are communicating effectively. Some of the factors found to facilitate effective communication are;

• Use an interpreter, • Identifying if the patient is ready to receive information • Ensure a relaxed environment • Show empathy; be aware of different patient values,

Some indications of when communication may be effective; • Patient or family asks questions. • Patients is able to verbalise their understanding of the education, • Patient makes changes • Patient invites health worker to home or land


5.5. Making a memory – developing beneficial educational material

Indigenous resources are not easily transferable to other Indigenous populations as food and language is often localized. Patient educational materials are often designed by individual renal services and there is little consistency in the way resources are developed and little evaluation as to their benefit. The dietitians interviewed made these suggestions and included are their words to enrich the examples.

Developing educational materials

Examples from dietitians and staff visited

Make a mental picture “They (Indigenous patients) are not too hot on collecting paper, sometimes I’ll go out and find the report card lying around. I try and make a mental picture”. “My impression is they don’t care to look at the materials very much they don’t use them as resource” When asked what images are best dietitians conveyed line drawings and “colour pictures”

Use large font “Simple words, bigger lettering some people have retinopathy or cataracts. Colour paper and or coloured print”

Colour coordinated paper

“If Phosphate is high think about working on pink colour information sheets, if your Potassium is high think about working on your blue information sheets”

Use traditional foods “What is Indigenous to that population? You may be able to modify a commercial tool to complement the population you are working with. The Canada Healthy


Eating Guide, has things like bannock (traditional bread) and wild meat so it has incorporated some of the traditional foods in it and is quite useful”. “One of our patients said she wants to work more with giving material to people that has foods that they eat, so they can identify”

Listen to patients ideas

In New Zealand, “They wanted one list, what I can and can’t eat for Phosphate and Potassium. They don’t eat Potassium and Phosphate; they eat foods, so that’s what they want”. In Auckland, New Zealand, they are developing a resource protocol, “So we are not allowed to develop any more resources without communication with patients first, that’s where we are headed!”

Be consistent with other resources

In Canada dietitians refer to the benefits of using familiar/consistent resources like the diabetes meal plan, “They are use to it, so I have found I can use that tool to help them because it’s something that is familiar to them even if they can’t read it; they have seen it before and understand it”.

Utilize audio visual In Winnipeg, Canada there had been working on an Aboriginal video but the dietitian and Native Liaison involved had both since left (I am promised a copy when available). In British Columbia, Canada, the diabetes dietitians had used videos and thought they worked best by being able to stop and start them with patients to answer questions.

Pilot/evaluate/appraise I found no evidence for formal evaluation of patient resources. This is the same situation in the Northern Territory. Patient feedback is invaluable but difficult to


obtain without bias. Engaging interpreters, for a focus group feedback session (own thoughts) could be trialed or included in a broader patient ‘well being’ or service satisfaction questionnaire.

5.5.1. Findings Dietitians spoken with felt educational materials for Indigenous people or people with low literacy level skills with kidney disease could include:

• Making a mental picture. • Utilizing large font. • Using traditional foods. • Coordinating coloured paper for different topics. • Being consistent with other patient handouts i.e. diabetes. • Using audiovisual media. • Evaluate through pilots and critical appraisal. • Developing patient oriented resources e.g. one list. Encompassing low

Potassium and low Phosphate. • Developing patient resources only in consultation with Indigenous

people.

5.6. Sharing effective communication strategies Sharing effective communication strategies is very individual. Most renal dietitians reported meeting with other dietitians to share ideas. Some dietitians mentioned sharing resources via public computer drive access. Currently the renal dietitian with Northern Territory Renal Services shares computer drive access with Royal Darwin Hospital dietitians put not fellow remote renal dietitian or Public Health Nutritionists. Shared computer access for educational material is a viable option. Access to www.renalrd.com, a free professional list serve for world renal dietitians is a great way to share educational material and receive feedback to queries. It was very helpful when planning this Fellowship. When the Renal Care Group, Dietitians in America meet or teleconference ________________________________________________________________________ Winston Churchill Memorial Trust Fellowship Report by Bernadeen Trotter 34

they have a ‘tip of the month’, for the most useful patient resource or way of teaching. Most renal dietitians interviewed, reported presenting to Nursing, Doctors and students or attending conferences as a way of sharing communication strategies and information.

5.6.1. Findings Most renal dietitians spoken with shared information in the usual ways of phone, email, meetings and presentations to other team members and colleagues. Some of the more unique opportunities to share communication strategies are through shared computer access drive, professional list serve i.e. www.renalrd.com and teleconferences.

5.7 System support for effective communication Most renal dietitians spoken with mentioned a supportive environment as a way their work structure supported them to communicate effectively. Many renal staff shares a lunchroom or dine together in the cafeteria. This presents opportunity for team building and sharing of knowledge across disciplines. Staff rotation and mentorship programs were also reported as system approaches for effective communication. All the dietitians visited played an active role in multidisciplinary meetings. Some renal teams had additional allied health staff i.e. Occupational Therapist, Psychiatrist, Psychologist and Educator. Northern Territory Renal Services could benefit (own thoughts) from an Indigenous Nutrition Health Worker and a Physical Activity Project Officer. Policy change! – In Auckland New Zealand, they are developing a protocol stating resources are only to be developed in consultation with patients. Northern Territory Renal Services (own thoughts) is embracing this thinking, through ‘Sharing True Stories’, research but could formalise the process. The renal services in Thunder Bay, Ontario, utilise ‘telehealth’ to communicate with remote dialysis units. Northern Territory shares the same geographical isolation as Ontario. Teleconferencing is a viable option for


Northern Territory Renal Services. This has been discussed as a strategy to manage remote patients, especially for the growing number of home haemodialysis patients. Renal dietitians are being requested to service increasing numbers of patients.

5.6.2. Findings Policy supports the process for effective communication. For example in Auckland New Zealand, new educational material is only developed with patient consultation. Staff mentorship’s and staff rotation promote and support effective communication. ‘Telehealth’ used in Canada is a good model to communicate and manage remote patients. 6. Review educational materials used to aid nutrition education at each

renal unit visited. On this Fellowship educational materials i.e. patient handouts, posters, booklets or educational aids, utilized with Indigenous patients were collected and or photographed. Not all photographs are included in this report due to size restriction of documents. Listed below are the educational materials of significant interest. Often renal units had the same commercially produced materials, these are only listed once. Education materials were selected for their text purpose, graphic features, Indigenous language, structure and comprehension. Materials have not been formally assessed for content, design and readability.

6.1. Capital and Coast District Health Board, Wellington Hospital, New Zealand

Photograph: A Hospital volunteer wearing a T-shirt with ‘LOST? ASK ME’ printed on the back. Poster: Step by step pictorial recipe modification ‘Making a healthier

meal’ in language. Poster: ‘Talking about food/He korero mo te kai’, i.e. how to ask for a

cup of tea in Maori, see Figure 5.


Figure 5: Bilingual poster on how to ask for a drink in Maori

6.2. Counties Manukau District Health Board, Auckland Hospital, New Zealand

Handout: Colour coordinated i.e. protein information printed on blue paper and potassium printed on green paper. Handout: ‘Healthy eating guide’ in language,

www.heartfoundation.org.nz Flip chart: serve size food photographs. Poster:’ Mix and Match sandwich fillings as easy as 123’. Poster:’ People who can help you, represents members of the renal

team. Poster:’ Words you may hear’, vocabulary for kidney disease. Handout: Some common used Pacific Island greetings.

6.3. Gila River Care Corporation, Arizona, USA Handout: ‘Grocery list suggestions for dialysis patients’ by Abbott

Renal Care. News letter: ‘Smoke Signals’. Handout: ‘Lower and Higher Phosphorus foods’, in colour with grams

of Phosphate on reverse side by Abbott laboratories 2004. Handout: ‘Your lab report’.

6.4. Renal Care Group, West Region, San Carlos, Arizona, USA Fridge magnet: 6-9 ounce protein serves size by ESRD Network 15.


Booklet:’ Your Low-Phosphorus food guide’ with alternative choices

http://www.heartfoundation.org.nz/

by Inbalance your Phosphorous Management Program, www.genzyme.com Handout:’ Fry Bread, how many calories?’ life size line drawing of fry

bread in three sizes showing calories per serve.

6.5. Dialysis Clinic Inc, Albuquerque, New Mexico, USA Handout: ‘Phosphate, Protein and Potassium Finder‘, in colour by

Phoslo Gel caps. Handout:’ Limit or avoid these foods’ (Phosphate, Sodium,

Potassium), by www.2003culinarycooks.com Handout: Food pyramid, ‘Healthy eating with Kidney Disease’ (low

Sodium, Potassium, Phosphate) by Abbott. Food model: Homemade food models made with sawdust, glue and

paint, see Figure 1. Food model: Paper cut outs by National Dairy Council a Non-profit

Educational- Scientific Organization, www.nationaldairycouncil.org. 3030 Airport Road, La Crosse, WI 54603 Ph 1800 426 8271 Fax, 1800 974 6455.

6.6. Renal Care Group, Anchorage, Alaska, USA Booklet: ‘Choose a meal‘(NEF of North Carolina), blue book with

index pictures for individualised meal plan. Samples: ‘Salt free Mrs. Dash’s seasoning blend. Handout: Alaska food guide pyramid.

6.7. Thunder Bay Regional Health Sciences Centre, Thunder Bay,

Ontario, Canada Handout: ‘Good sources of Protein’ and ‘High Phosphate foods’

coloured pictures by Fresenius. Handout:’ Higher and lower Sodium (better choice) by 2003

Professional Nutrition Services Inc, www.renalrd.com Handout: ‘20 tips to control fluid intake’ by www.renalrd.com

6.8. Health Sciences Centre, Winnipeg, Manitoba, Canada • Poster: ‘Anishinaabe Medicine wheel’, spiritual well being. • Flip Chart: Line drawings describing dialysis by Ross. • Handout:’ Higher and low potassium foods by’ www.renalrd.com


http://www.genzyme.com/




• Newsletter: The Manitoba Renal Program MRP Filter • Booklet: Fundamentals of learning, 100 brainteasers, by Donna L

Morton de Souza • Video: Indigenous education, project on hold, copy to be sent.

6.9. Community Aboriginal Health, Victoria, British Columbia,

Canada • Handout:’ What happens when we eat’, pictorial diagram showing

glucose traveling from stomach to muscle. • Extract from book: ‘How to eat at your main meal’ by Karen Graham. • Handout: ‘Eat regularly’, describes meal frequency for diabetics. • Handout: Coastal B.C Native Food Guide. • Handout: ‘What is your blood sugar level?’ by Precision QID,

Medisense Canada.

6.9.1. Findings Effective education materials appear to include;

• ‘Plain English’ • Use of colour • Liberal use of graphics is paramount for effective

communication. Posters with common dialogue in Indigenous languages assist staff and patients to converse. Posters in the renal unit introduce Indigenous patients to renal vocabulary and the renal team. Dialysis companies produce good quality handouts and with guidance they could produce culturally appropriate patient handouts. The list serve, www.renalrd.com is a good source of patient handouts that are critically appraised by renal dietitians.



7. Main Body Findings Objective 3: Observe the education process

between dietitian and Indigenous patient where possible. Opportunities arose to observe nutrition education sessions between a dietitian and:

• Maori patient on peritoneal dialysis regarding unusually low Sodium.

• Maori patient on haemodialysis with elevated Phosphate. • Group of Maori patients on Haemodialysis raising awareness of

foods high Potassium. • Mock interview for a newly diagnosed Chronic Kidney Disease

patient with low literacy level skills in Arizona. • Native American patient on Haemodialysis with raised Potassium. With consent I was able to;

• Audio tape two education sessions • Observe and take notes on two education sessions and • Videotape one education session.

The emerging themes are; 7.1. Bedside consults

Most education sessions observed took place at the bed or chair side in the dialysis facility. This is often not a private area and is difficult for patients to focus with machines alarming, interruptions for medication and often the incredible urge to sleep while on dialysis. To provide education to an outpatient one renal dietitian used a large comfortable consult room. The consult room was in a shared facility with Oncology away from the renal unit. The patient and renal dietitian were able to focus without interruption.

7.2. Negotiation The renal dietitians observed, relied heavily on written patient education material. Patient education materials were individualised by circling important points and crossing out or removing irrelevant or confusing information. ________________________________________________________________________ Winston Churchill Memorial Trust Fellowship Report by Bernadeen Trotter 40

When utilising food packets one renal die titian tried to negotiate the patient by saying,”What shall we start with?” One renal die titian demonstrated how to teach ‘foods to have’ and ‘foods to avoid’ .by showing two patient handouts. She believed if taking foods away, “Iit’s better to add foods back. So they know your not torturing them”. More than one patient requested a collaboration of diet messages. For example a patient handout combining foods low in Potassium and low in Phosphate.

7.3. Questioning patient to evaluate understanding As one Dietitian demonstrated “Can you tell me what Phosphate is? Some of the foods you eat have Phosphate can you remember which foods? What’s the problem if Phosphate is too high? Do you feel itchy? Do you remember what you can do to bring Phosphate down? Do you chew the binders?” Throughout an education session the renal dietitian tried to evaluate patient understanding by saying, “Do you know why I am saying this? Can I put a line through it? Why have I done that? I don’t want you to eat all these at once”. In one education session questions were graded up as the interview progressed. In conclusion the patient said, “If the fluid is in the wrong place how will I know when the fluid is in the right place?” This showed a growing understanding on the patient’s behalf.

7.4. Appropriate level of education In one education session the patient expressed knowledge of milligrams and this was a great opportunity to deliver education at the level appropriate for this individual. Unfortunately the opportunity was missed. More often than not renal dietitians used explanations like, “When this dirty number goes up and that’s called blood urea nitrogen (BUN) which is a waste material…”


7.5. Full explanation “The reason for eating more Protein is to keep you stronger and help fight infection” (Patient:”Oh I didn’t know that”) Initial explanation was given that all pictures on the Bingo cards can raise your blood Potassium and why too much Potassium in the blood was a problem. In Albuquerque the renal dietitian used an analogy to explain the workings of the kidney, “The kidneys are the washing machine of the body. As a result when the kidney cleans the blood the kidney throws out all the trash and it becomes urine or pee. Now all the clean blood goes in into the blood. And this goes on over and over all day long. This is a normal kidney” “Very hard for the elderly, with no English. I haven’t found anything that works for everybody; I think some can’t grasp it. I don’t know how to explain it better. Maybe they need to know how the body works”

7.6. Visual image Renal dietitians observed had their individual ways of creating visual images. One renal dietitian described protein serves sizes As,” What fits in your hand is the right size of meat, same as 3 slices of meat. Easy way to remember as you has always got your hand with you!” Another dietitian used the comparison of a fridge magnet sticking or binding to the fridge to create an image of how the Calcium in Phosphate medication binds to Phosphate in food. A broken piece of chalk was used to demonstrate weak bones due to Osteomalacia- very effective. One patient noticed veins were blue and arteries are red in the ‘Sharing True Stories’ Kidney Story and said, “When you can see things it helpful”. This is a common misconception (own thoughts) that we assume everybody has the same level of understanding of how the body works.


“The hardest thing to understand is the components of the blood, the vitamins and minerals; they can’t visualize and can’t believe all these things are in the blood. There are no words for Potassium. I try to explain and then actually use the word i.e. Potassium”.

7.1.1. Findings Most education sessions observed took place at the bed or chair side in the dialysis facility. Consult rooms are ideal if available.

Negotiating is part of every education session. Dietitians need to continually evaluate patient understanding. Gauging the appropriate level to deliver education is difficult.

Full explanations are invaluable i.e. “The kidneys are the washing machine of the body.

Individual ways of creating visual images is evident i.e. a breaking a piece of chalk in two to demonstrate weak bones due to Osteomalacia. One dietitian commented, “The hardest thing to understand is the components of the blood, the vitamins and minerals; they can’t visualize and can’t believe all these things are in the blood. There are no words for Potassium. I try to explain and then actually use the word i.e. Potassium”.


8. Recommendations Objective 1: Interview renal dietitians on how they

educate Indigenous patients with kidney disease about nutrition and record the emerging themes

• Use trained interpreters where possible • Include Indigenous food, culture and communication in staff

orientation. • Develop culturally appropriate food models • Utilise local food packets/packaging. • Ensure nutrition messages are consistent with chronic disease

pathways i.e. Diabetes through to Chronic Kidney Disease. • Discuss use of hand jive as a teaching tool with Public Health

Nutritionists and Health Workers! • Do not assume prior literacy skills i.e. laboratory report cards. • Engage in creative ideas to educate and motivate patients, like taste

tests, role-plays, Potassium Bingo, board games, flash cards and trade fares.

• Use traditional food words and names to build rapport • Identify what motivates Indigenous patients, on individual or

group level to embrace their own health. • Adjust teaching style to include small blocks of information that

can be repeated • Take advantage of teachable moments when they arise. • Facilitate effective communication by:

o Using an interpreter o Identifying if patient is ready to receive information o Ensureing a relaxed environment o Show empathy; be aware of different patient values.

• Encourage patients to ask questions to assist in the evaluation of effective communication.

• Share patient education materials through computer access drive. • Rotate staff through clinical areas and encourage mentorship’s. • Educational material for Indigenous patients should include;

o Making a mental picture


o Larger font o Traditional foods and food words o Coloured paper for different topics o Being consistent with other patient handouts i.e. diabetes o Useing audio visual media where possible o Evaluation through pilot and critical appraisal. o Patient oriented resources i.e. a combined low Potassium

and low Phosphate food list o Consultation with Indigenous people when developing

patient resources.

Recommendations Objective 2: Review educational materials used to aid nutrition education at each renal unit visited

• Continue to develop ‘Sharing True Stories’ education material using ‘story methodology’

• Develop educational materials embracing o Plain English’ o Colour (paper or print) o and graphics

• Subscribe to list serve www.renalrd.com as a good source of patient handouts that have been circulated by renal dietitians.

• Work in groups with dialysis companies to produce high quality patient education material

Recommendations Objective 3: Observe the education process between renal dietitian and Indigenous patient where possible

• Access consult rooms or private space for education sessions where possible

• Negotiate with patients throughout education sessions. • Evaluate education sessions through patient understanding and patient

being patient able to reiterate education message in preferred language • Use full explanations of pathophysiology where possible i.e.

components of blood • Deliver education at the appropriate level • Adopt visual demonstrations that work i.e. breaking a piece of chalk

in two, to explain Osteomalacia ________________________________________________________________________ Winston Churchill Memorial Trust Fellowship Report by Bernadeen Trotter 45


9. References AMC Cancer Research Center, Beyond the Brochure, Alternative Approaches to effective Health Communication.1600 Pierce Street Denver, Colorado 80214 Doak, C., Doak, L. and Root, Jane 1996 (2nd Ed) Teaching patients with literacy skills. J.B Lippincott Company Philadelphia Devitt J. Producing renal patient education material in Aboriginal languages. Project CRC for Aboriginal and Tropical Health Darwin, Northern Territory; 2003 unpublished Graham Karen RD CDE, Meals for Good Health. Revised edition. ISBN 0-9696770-6-5. 2005. Parker C, Win C, Perry T, and Monro, J, 2001. Development of a Nutrition Education resource for Maori with type two diabetes, New Zealand Dietetic Association proceedings pp 100-102


Appendix 1 Questionnaire for Dietitians working with Indigenous renal patients 1. Do you use interpreters for indigenous patients? If yes how do you utilise

interpreters for effective communication? (Are their interpreters for all languages? what training do interpreters receive?)

2. What training or experience do you have in communication and especially in cross-cultural communication?

3. How do you teach Indigenous or low literacy level groups about good nutrition and renal diets?

4. How do you know your communicating effectively? If you’re not communicating effectively what options do you have?

5. How do you go about developing resources for Indigenous or low literacy level groups with renal disease? (How do you engage /encourage ownership of processes for learning)

6. How do you know if resources are beneficial in communicating with Indigenous or low literacy level groups

7. What images (photos/graphics/animations/diagrams/videos) do you use to assist you when communicating with indigenous or low literacy level patients?

8. How do you share effective communication strategies and resources in the system you work? (Is their any broader sharing amongst dietitians?)

9. How does the system you work in support the process for effective communication? (What happens when experienced staff leave)



Footnotes

i Levey AS, Beto JA, Coronado BE, et al. controlling the epidemic of cardiovascular disease in chronic renal disease: what do we know? What do we need to learn? Where do we go from here? National Kidney Foundation Task Force on Cardiovascular Disease. Am J Kidney Dis 1998; 32:853-906. ii Sarnak MJ, Levey AS. Cardiovascular disease and chronic renal disease: a new paradigm. Am J Kidney Dis 2000; 35:S117-31. iii Spencer JL, Silva DT, Snelling P, Hoy WE. An epidemic of renal failure among Australian Aboriginals. Med J Aust 1998; 168:537-41. iv Morgan L. A decade review of: methods to improve adherence to the treatment regimen among haemodialysis patients. Nephrol Nurs J 2000; 27(3): 299-304 v Devitt J. Producing renal patient education material in Aboriginal languages. Project CRC for Aboriginal and Tropical Health Darwin, Northern Territory; 2003 unpublished vi Cass A et al. Sharing the true stories: improving communication between Aboriginals patients and healthcare workers. Med J Aust 2002; 176:466-470

the winston churchill memorial · executive summary 5 3. program 10 4. main body introduction 13 5....

Documents