Agents for Change – Exploring the intangibles of primary healthcare

Noy Pullen informs us about the birth of Agents For Change, all that the project has achieved and what they aim to achieve with effective communication in the field of health.


Agents for Change is an unusual project. Its efficient and sound methodological approach is proving successful in dealing with root causes to changing lifestyles that are highly difficult to deal with. The courses seemingly also prove to be effective as a supplement to the current ongoing training healthcare staff.Extract from a report by Hanne Strandgaard, World Diabetes Foundation project manager, after a field visit to the ‘Agents for Change Project’ in South Africa.

 The current debate around communication in the field of health

A conversation is currently developing online through an international communication network initiative. Here are some of the provoking questions posed by the participants, all of whom work in the field of health empowerment

  • The health community seems not to be able to learn lessons, tagging communication onto the end of any intervention. When will we ever learn to interweave communication strategy (not just politicians and experts telling people what to do) but engaging people in difficult situations to hear their solutions?
  • If you had R500 a month to live on how would you juggle it? I always maintain that poorer people are often much cleverer with their money than the middle classes. They need to be.
  • It’s the same with finding solutions that will work locally. Buckets of money go to big PR firms and advertising firms who make clever slogans and nicely animated ads, basically sending the messages that the experts think best.
  • For almost a year, governments all over the world have been struggling to control spread of the COVID-19 pandemic. Literally hundreds of billions of dollars have been spent on appliances, supplies, hospital equipment and space to accommodate COVID patients. But what has been spent on social research to find out why people don’t follow these guidelines? Does anyone finance controlled experiments to validate communication interventions? I believe if a fraction of what is spent on treatment of diseases was spent on social, psychological and communication research, and findings were used, the pandemic stats would be different today. But who is listening?
  • Let us look at health issues and how they are communicated. Most of the information is too clinical and not accessible. Statistics shared are causing panic instead of encouraging behaviour change. The way healthcare facilities have been operating is creating stigma and discrimination, especially for people with limited information.
  • Knowledge paternalism, or to put it more bluntly, god complexes are a major causal problem with its failure to listen to lived experiences of patients. Motivational interviewing seems to work, in part at least, by dialogue and listening.
  • Brazilian educator, Paulo Freire, compares the conventional or ‘banking’ concept of education (in which students/patients receive, file and store the knowledge from the ‘experts’) with that of the people’s own lived experiences. These lived experiences are, for Freire, the primary source of knowledge which can be translated and used to overcome learning barriers.

The birth of Agents for Change

Such questions and dilemmas faced Noy Pullen as early as 1996 in her capacity as journalist and communication liaison at Diabetes South Africa head office. Passionate telephonic discussions with Trudy Bodenstein, a progressive pharmacist and diabetes activist, led to the conception of Agents for Change. Trudy and Noy would spend two days with health providers, exploring existing barriers to reaching the diabetes community, as well as ways to improve communication about diabetes management, nutrition and lifestyle.

The first courses were run in Kwa-Zulu Natal for the Department of Health, sponsored by the South African Sugar Association. When Noy moved to Cape Town, Trudy started a family, so Noy and Buyelwa Majikela Dlangamandla, diabetes nurse specialist, met and employing their diverse strengths, created the present model.

The present model

Agents for Change metamorphosed into a three-tiered project. The health providers attend a two-day module and are asked to set their own health goals, also indicating how they propose to enhance interaction with patients and colleagues. After three months, the same participants meet again and share what they experienced.

This second module is called Empowering the Patients. Here the health providers who attended the first module are invited to share their successes and challenges over the past three months. These are converted into living case studies. Diverse counselling skills are introduced to address these issues.

A multi-disciplinary group attends so that the whole team is involved. Depending on the needs and availability in each region, doctors, psychologists, physiotherapists, food scientists and dietitians, health promoters, paramedics, matrons, sisters, home-based carers and other community workers are invited. In this way, everyone is considered.

Impact over the years

Agents for Change in its present form has offered more than 200 modules (with each participant attending both modules). There is an average of 30 participants on each module. This affects the lives of their colleagues to whom in-service training is offered 3000 x 10 = 30 000. These health providers probably influenced at least 200 patients each.

Agents for Change has influenced the lives more than seven million considering families, churches and friends. WDF project manager, Hanne Strandgaard, wrote in her field report there was evidence from participants whom she met during her site visits, that Agents for Change still influenced  individuals more than five years after the course had been completed. People stay in touch.

Who is invited?

Participants are selected by the Department of Health or NGOs focusing attention on outlying regions around the country. The Department of Health or the NGO provides the venue and the participants’ travel.

Last words from one group of participants

‘Aha! Moments’ from the Agents for Change project

  • The right way of eating, the right portions at the right time can prevent diabetes or improve management.
  • It begins with me. I can assess my own risk factors for getting diabetes and can reverse this process. I must first help myself before I start helping my patients.
  • We enjoyed the way you served the food, the leafy salads and the lemon and cucumber water to drink.
  • Watching my own weight is important. I enjoyed the healthy eating demonstration and promise I will help others do the same.
  • I learnt a lot. The main thing is giving hope. Based on Tim’s story (one of the true stories in the diabetes manual – My Diabetes Toolkit) you can live a long time with diabetes.
  • Tim’s story helped me know how to live a balanced lifestyle. Being active after eating and not lying down. Because of Tim’s story I now know the symptoms.
  • Because we learnt that diabetes is a killer of our people. I am happy to learn how to help people.
  • My grandmother has diabetes. I have learnt a lot of tools I can apply in the home.
  • My mother-in-law has diabetes. I will help her plan her groceries so that she eats less fried food.
  • The main message I picked up about diabetes is that one does not have to die from diabetes. I always thought it was a killer disease.
  • We do not have clinics where we live, only mobile clinics. It’s why we help the elderly. It’s us who work with the youth in the community. We have been empowered to do so.
  • I have learnt about the co-morbidities with diabetes like hypertension and glaucoma and can now start an awareness campaign to prevent and /or manage diabetes.
  • I have learnt that stress makes diabetes worse. It made me realise that I give my dad stress. I am going to stop doing that.

Below are comments from the participants of what they aim to achieve before the nest module:

  • I want to lose 5kg before the next module.
  • I want to change my cooking habits.
  • Less fatty food and polony and more of what we ate here on the course.
  • Use less oil. Boil and steam my food.
  • Cut down on my alcohol. One glass of wine once a week.
  • Start with two push-ups and increase.
  • Reduce my sugar by half. Do daily vowel exercises.
  • Reduce sugar and do stretching exercises.
  • The vowel exercise helps with my heart palpitations. I will continue with them.
  • My grandchildren loved the vowel exercise. It also helps my asthma
  • Change to low-GI bread at home.
  • I am going back to soccer.

Impact of Agents For Change

The below is an extract from World Diabetes Foundation field trip report:

  • Improved clinical knowledge of diabetes and impact of lifestyle and nutrition on health.
  • More effective collaboration between HCP, healthcare workers and patient.
  • Increased number of food gardens among participants and communities.
  • More effective patient interaction groups.
  • More effective hands-on use of the distribution of Diabetes Focus and other Agents for Change tools to motivate and sustain these groups.

How is Agents For Change funded?

The Agents for Change project has been supported by the World Diabetes Foundation, various trusts, banks as well as pharmaceutical companies. Funding from these communities enables this work to continue. Participants who wish to attend can contact us. Details below.

Many experts who have been involved with this initiative have been impressed by the relatively low-cost per project. A course for 30 people for two days’ costs in the region of R42 000. This includes travel costs and accommodation for both course presenters, as well as healthy eating presentations during the courses.

The course material consists of practical tools, such as monofilaments, tape measures for waist circumference, recipe guides for healthy colourful food, food gardens manuals, a counselling manual called Discovering Hope, and a colourful comprehensive Q&A style, user-friendly diabetes manual, called The Diabetes Toolkit.

All materials are developed or sourced by the presenters. Fun physical activities are shared. Attendees also receive a Hand Jive portion guide and the Five pointed star guide, addressing physical, rhythmical, community, individuality and spiritual health.

AGENTS FOR CHANGE ADDRESSES FULLY THE SITUATIONs DESCRIBED BY THE COMMUNICATION NETWORK INITIATIVE COMMENTS IN THE INTRODUCTION. THE AGENTS FOR CHANGE PROJECT NEEDS FUNDING FOR NEXT YEAR. YOUR ASSISTANCE WOULD ENABLE THIS VALUABLE WORK TO CONTINUE. CONTACT DETAILS BELOW.


Please contact Noy Pullen if you would like more information: linoia@web.co.za or 072 258 7132.


DSA new logo
AGENTS FOR CHANGE IS A DIABETES SOUTH AFRICA PROJECT MANAGED BY NOY PULLEN.

Breaking down diabulimia

Chief dietitian at Tara Hospital, Eliana Dawood, explores the co-occurrence of Type 1 diabetes and eating disorders: diabulimia.


What is diabulimia?

Diabulimia is a term which developed in the public and in the media to describe the diagnosis of an eating disorder in a person with Type 1 diabetes which is also known as Eating Disorder – Diabetes Mellitus Type 1, (ED-DMT1).

Diabulimia is not an official diagnosis in the Diagnostic and Statistical Manual of Mental Disorders, edition 5, (DSM-5). It specifically describes a disordered eating behaviour where a person reduces or omits insulin to lose weight.

What is diabetes?

Let us remind ourselves of what diabetes means. When a person eats carbohydrates, this food gets broken down into glucose. Every single cell in the body gets its energy from glucose. The pancreas produces insulin which helps the glucose move out of the bloodstream and pass into the body cells where it gets used for energy.

Without insulin, the glucose can’t move into the cells and remains in the bloodstream, causing high blood glucose levels. If this continues over time the body’s cells become starved and the body begins to break down fat and muscle tissue to supply the body with glucose. This process produces ketones as a by-product which causes the blood to become acidic. This is known as diabetic ketoacidosis (DKA), which requires hospitalisation and it can lead to seizures, coma and death if left untreated.

Eating disorders in those with diabetes

Any person with diabetes whether Type 1 or Type 2 can develop any of the classified eating disorders. The term diabulimia doesn’t necessarily describe all types of eating disorders which may arise in those with diabetes.

People with diabetes can engage in any number of eating disorder behaviours or they may have relatively normal eating behaviours and only omit their insulin.

Eating disorders in Type 1

Eating disorders in people with Type 1 diabetes increase the risk of DKA as well as medical complications related to diabetes (especially retinopathy and neuropathy) and are linked to higher rates of hospital and emergency room visits.

Prevalence of ED-DMT1

The prevalence of ED-DMT1 in various studies has been reported as follows:

  • It’s estimated that disordered eating or eating disorders, including insulin omission has been reported in up to 30% of people with DMT1.
  • Women with Type 1 diabetes mellitus (DMT1) are 2,4 times at a greater risk of developing an eating disorder than non-diabetic women.
  • Approximately one in three female and one in six male patients with DMT1 reported disordered eating and/or frequent insulin restriction.

Who develops an eating disorder and how does this occur?

Type 1 diabetes often starts in childhood or early adulthood. Adolescence is a period of transition and life changes which can be particularly difficult to navigate and may increase vulnerability to the development of an eating disorder.

In addition, the recommended management of Type 1 diabetes can make a person more vulnerable to an eating disorder. Extra attention and emphasis is placed on meal planning, portion size, carbohydrate counting, label reading, exercise and weight. The sense of intensely strict rigidity and the hyper-focus on control and numbers can result in a blurring of the fine line between managing your diabetes well and developing an obsession.

Despite these attempts at tight blood glucose control, the body is a complex organism and even “optimal” management can lead to high and low blood glucose levels.

In a society rooted in diet culture, the obsession with weight-loss can present a great temptation to skip insulin as a sure-fire way to lose weight. This is particularly appealing to a patient population that is often diagnosed with Type 1 diabetes between childhood and adolescence.

Additional contributory factors include perfectionistic character traits, dietary restraint and a feeling of constant deprivation, pressure and burnout from constant vigilance, and potential shame from judgement by doctors and peers based on these numbers.

It’s easy to see how a person can go on to develop low self-esteem, poor body image, strange food rules, food fears or compulsions considering the above context.

Treatment

Both disordered eating and insulin restriction should be considered in T1D care irrespective of sex, age at onset, and diabetes duration.

Insulin restriction is associated with increased rates of diabetes complications and increased mortality risk. Mortality associated with insulin restriction appears to occur in the context of eating disorder symptoms, rather than other psychological distress. Anorexia nervosa and Type 1 diabetes together have a 38% mortality rate which is five times greater than anorexia nervosa on its own.

People with ED-DMT1 who are medically or psychiatrically unstable require in-patient treatment. Hospitalisation for DKA and medical stability is the most immediate concern as the immediate goals of in-patient care are stabilisation of blood glucose levels and establishment of regular eating patterns.

It’s crucial for the person to have a multi-disciplinary team who understands both diabetes and eating disorders in approaching their treatment. This would include a doctor, endocrinologist, certified diabetes educator, registered nurse (specialising in diabetes), and a psychiatrist, dietitian, therapist/clinical psychologist and social worker (specialising in eating disorders) who communicate regularly in working towards a common goal.

Professionals possessing both these skill sets are particularly difficult to find. At a minimum, these professionals should have eating disorder experience, a willingness to learn from one another and to work collaboratively with the patient.

Medical and psychiatric assessment and interventions should have a specialised focus on ED-DMT1. Psychosocial interventions often combine enhanced cognitive behavioural therapy for treating eating disorders (CBT-E), Dialectic Behavioural Therapy (DBT) and family-based therapy (FBT) to address the behavioural issues associated with ED-DMT1.

Treatment for patients with ED and T1DM should consider the individual’s personality and role of insulin abuse when determining the appropriate intervention.

Relapse prevention

There is a higher incidence of mood disorders, particularly depression and anxiety in both men and women with diabetes. Management of co-morbid psychiatric conditions may form an integral part of relapse prevention because if left untreated they may contribute to the dysfunction and distress that can lead to relapse.

Relapse prevention is a crucial aspect of eating disorders treatment and should be included in all phases of treatment. Ultimately, treatment in this patient population should be geared towards assisting patients to have good enough diabetes control vs perfect diabetes control.

Resources for you:

wearediabetes.org

diabulimiahelpline.org

Book: Prevention and Recovery From Eating Disorders in Type 1 Diabetes: Injecting Hope by Ann-Goebel-Fabbri


REFERENCES:

  1. Position statement: Diabulimia. Diabetes UK. March 2017
  2. Sick enough: A guide to the medical complications of eating disorders. Gaudiani JL.2019
  3. Bermudez O, Gallivan H, Jahraus J, Lessser J, Meier M, Parkin C. Inpatient management of eating disorders in type 1 diabetes. Diabetes Spectrum 2009; 22(3): 153-158 doi:10.2337/diaspect.22.3.153.
  4. Bächle C, Stahl-Pehe A, Rosenbauer J. Disordered eating and insulin restriction in youths receiving intensified insulin treatment: Results from a nationwide population-based study. Int J Eat Disord. 2016 Feb; 49(2): 191-6
  5. Atkinson, M. A., Eisenbarth, G. S., and Michels, A. W. (2014). Type 1 diabetes. Lancet383, 69–82. doi: 10.1016/S0140-6736(13)60591-7
  6. Custal N, Arcelus J, Agüera Z, Bove FI, Wales J, Granero R, Jiménez-Murcia S, Sánchez I, Riesco N, Alonso P, Crespo JM, Virgili N, Menchón JM, Fernandez-Aranda F. Treatment outcome of patients with comorbid type 1 diabetes and eating disorders. BMC Psychiatry. 2014 May 16;[14:14]0
  7. Wisting, L., Frøisland, D. H., Skrivarhaug, T., Dahl-Jørgensen, K., and Rø, Ø (2013). Disturbed eating behavior and omission of insulin in adolescents receiving intensified insulin treatment: a nationwide population-based study. Diabetes Care36, 3382–3387. doi: 10.2337/dc13-0431
  8. Goebel-Fabbri A, Fikkan J, Franko D, Pearson K, Anderson B, Weinger K. Insulin Restriction and Associated Morbidity and Mortality in Women with Type 1 Diabetes. Diabetes Care (2007).

MEET THE AUTHOR


Eliana Dawood is the Chief Dietitian at Tara Hospital and is also affiliated with the LinkedCare multi-disciplinary team who have extensive experience in treating eating disorders.

Debunking immune boosting myths

Dr Yashica Khalawan, a general practitioner, debunks several immune boosting myths and clarifies the facts.


Immune boosting has been a trending topic since the start of the COVID-19 pandemic. However, the concept of immune boosting is scientifically misleading and often used to market unproven products and therapies. There is currently no evidence that any product or practice will contribute to enhanced “immune boosting” protection against COVID-19

The following are two common myths regarding immune boosting:

Myth: The more active your immune system is, the healthier you are.

Fact: A hyperactive immune response is responsible for allergic reactions to ordinary non-toxic substances. It also underlies several major diseases, including diabetes, lupus and rheumatoid arthritis.

Myth:  Receiving more than the recommended dietary allowance of a vitamin or mineral will improve your immune system.

Fact: There is no evidence that taking extra amounts of any vitamin will improve your immune system or protect you if you don’t have a micronutrient deficiency.

What we do know is several mineral and vitamins have antioxidant, immunomodulatory and antimicrobial roles which could be helpful for the immune response against the COVID-19 virus.

A well-balanced diet ensures intake of these nutrients. Feed yourself and your family lots of fresh fruits and vegetables and avoid highly processed foods.

Zinc, vitamin C and vitamin D stand out for having immunomodulatory function and play vital roles in preserving physical tissue barriers in the skin and mucous membranes.

Foods to eat

Here are foods to incorporate in your diet to help boost these elements:

Zinc: legumes (chickpeas), seeds, nuts, dairy, eggs, whole grains, dark chocolate

Vitamin C: citric fruits, peppers, strawberries, black currents, broccoli, Brussel sprouts, spinach, and kale.

Vitamin D: sunlight exposure, salmon (Omega 3’s), sardines, cod liver oil, tuna, egg yolks, mushrooms and fortified foods.

An elevated blood glucose level is a strong predictor of severity of illness and mortality in patients infected with COVID-19. Poorly controlled diabetes mellitus is expected to predispose to infection and a more adverse outcome with increased complications in persons exposed to COVID-19.

What can I do to ensure my blood glucose levels are controlled?

  1. Continue taking your prescribed medication daily as usual.
  2. Test your blood glucose levels and keep track of the results.
  3. Make sure you have at least a 30-day supply of your diabetic medications on hand.
  4. Contact your healthcare provider if you are feeling ill as a matter of urgency and follow their instructions accordingly.

Keeping stress levels down and getting enough sleep can be challenging during the pandemic, however, this can also impair the immune system. Ensure you are remaining physically active and practice sleep hygiene, aim to get seven to nine hours of sleep a night.

Despite all the current challenges we face, focus on making healthy choices daily, keep your blood glucose levels stable and follow the preventative measures to keep you and your family healthy and safe.

Dr Yashica Khalawan MBCHB(UKZN), Adv dip in Aesthetic Medicine(FPD) has over six years’ experience as a general practitioner. Having worked in a non-surgical aesthetic practice for the past three years, she is now completing her post graduate diploma in dermatology through the University or Plymouth(UK).

MEET THE EXPERT


Dr Yashica Khalawan MBCHB(UKZN), Adv dip in Aesthetic Medicine(FPD) has over six years’ experience as a general practitioner. Having worked in a non-surgical aesthetic practice for the past three years, she is now completing her post graduate diploma in dermatology through the University or Plymouth(UK).


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