I have been struggling with an eating disorder for the past few years. I am afraid to eat and afraid I will gain weight. The fear is unjustified as I was never overweight. I have weighed the same since I was 12 years old, and I am currently nearing my 25th birthday. Yet, when I see my reflection, I see somebody who is much larger than reality.
I told my therapist that I thought I was fat. She said it was 'body dysmorphia'.
She explained this as a mental health condition where a person is apprehensive about their appearance and suggested I visit a nutritionist. She also told me that this condition was associated with other anxiety disorders and eating disorders. I did not understand what she was saying as I was in denial; I had a problem, to begin with. I wanted a solution without having to address my issues.
Upon visiting my nutritionist, he conducted an in-body scan and told me my body weight was dangerously low.
I disagreed with him.
I felt he was speaking about a different person than the person I saw in the mirror. I felt like the elephant in the room- both literally and figuratively. He then made the simple but revolutionary suggestion to keep a food diary to track what I was eating.
This was a clever way for my nutritionist and me to be on the same page. By recording all my meals, drinks, and snacks, I was able to see what I was eating versus what I was supposed to be eating. Keeping a meal diary was a powerful and non-invasive way for my nutritionist to walk in my shoes for a specific time and understand my eating (and thinking) habits.
No other methodology would have allowed my nutritionist to capture so much contextual and behavioural information on my eating patterns other than a daily detailed food diary.
However, by using a paper and pen, I often forgot (or intentionally did not enter my food entries) as I felt guilty reading what I had eaten or that I had eaten at all.
I also did not have the visual flexibility to express myself through using photos, videos, voice recordings, and screen recordings. The usage of multiple media sources would have allowed my nutritionist to observe my behaviour in real-time and gain a holistic view of my physical and emotional needs.
I confessed to my therapist my deliberate dishonesty in completing the physical food diary and why I had been reluctant to participate in the exercise. My therapist then suggested to my nutritionist and me to transition to a mobile diary study.
Whilst I used a physical diary (paper and pen), a mobile diary study app would have helped my nutritionist and me reach a common ground (and to be on the same page) sooner rather than later.
As a millennial, I wanted to feel like journaling was as easy as Tweeting or posting a picture on Instagram. But at the same time, I wanted to know that the information I provided in a digital diary would be as safe and private as it would have been as my handwritten diary locked in my bedroom cabinet.
Further, a digital food diary study platform with push notifications would have served as a constant reminder to log in my food entries as I constantly check my phone. It would have also made the task of writing a food diary less momentous by transforming my journaling into micro-journaling by allowing me to enter one bite at a time rather than the whole day's worth of meals at once.
Mainly, the digital food diary could help collect the evidence that I was not the elephant in the room, but rather that the elephant in the room was my denied eating disorder.
The elephant in the room
People often ask me, why is health literacy of interest to me?
While studying and working in various countries (both high, and low and middle-income countries), I noticed that health systems and health professionals (public health, clinicians and policymakers) often fail to realise the changing health needs of people and often use the "one size fits all" approach regardless of age, gender, culture, and context.
I also noticed that we only focus on people engaging with the existing health services and ignore those missing out from them. I believe the real problem lies among those who are missing out from the existing services. Leaving the ones who are already missing out from the current services is widening the existing health inequity.
For me, health literacy is a way to reach individuals and communities who cannot engage in existing health services and understand the challenges they face to access credible health information and utilise health services at the right time. I believe health literacy can help to ensure no one is left behind and can play a crucial role in ending this pandemic.
Health literacy is an asset that enables and empowers individuals to make daily decisions to improve and manage their health and the health of those around them.
The World Health Organisation broadly defines health literacy as "the personal characteristics and social resources that influence the ability of individuals and communities to access, understand, appraise, remember, and apply/use health information, knowledge and services to promote health and sustain healthy behaviour" (1). It is a critical determinant of health and is closely linked with the concept of trust and health equity.
We can address health literacy at three levels (see Figure 1) that is at the individual level (asset), at the health services/health organisation level (health literacy responsiveness), and the community level (distributive health literacy).
Health literacy is a broader concept than the individual's asset; instead, it provides insight into how community and health services should address and respond to people's changing health needs to engage them in healthy lifestyle practices. This is termed "health literacy responsiveness" (3).
A health literacy responsive approach includes using context-specific, culturally relevant, practical, inclusive, and transparent communication strategies to inform and aware people of the changing nature of the COVID19 crisis. It also ensures easy access to vaccines and other preventive health services by providing an enabling environment to make healthier choices the easier choice for people and their families.
Health literacy responsiveness can play a significant role in generating trust in health systems and health care providers. Thus it is crucial in enhancing the reach and utilisation of health care services among hard to reach populations.
Distributed health literacy recognises that health literacy is distributed among families, community members and social networks and can influence the health-related decision-making power of individuals (4).
The idea of distributed health literacy is evident in low and middle-income countries and in communal societies where older people (ex: grandmothers) in families play a crucial role in making decisions about accessing and utilising health information and health services.
Distributed health literacy can play a significant role in understanding the influence of cultural and religious practices on health-seeking practices in families and communities. Thus, engaging older people and religious/cultural leaders in delivering the health intervention (vaccination) can help to enhance its uptake in communal societies.
The emerging evidence suggests that the health literacy approach can increase uptake of preventive health services, reduce health inequity and improve health outcomes (5, 6).
Linking with the current COVID19 crisis, the health literacy approach can play a crucial role in increasing uptake of preventive measures to curb the growing health, social and economic burden of COVID19.
Majorly, it can help increase the uptake of COVID19 vaccination by fighting the infodemic and overcoming vaccine hesitancy among the general population and can help achieve herd immunity at a faster pace.
Vaccine hesitancy is defined as the delay in the acceptance or refusal of vaccines despite the availability of vaccine services. It is influenced by factors such as convenience, complacency and confidence (7).
These influencing factors can be governed using a health literacy approach at the local, national and international level, which can help to foster effective communication and community engagement to make vaccinations a social and cultural norm throughout the world.
The infodemic is excessive information, including false and misleading in physical and digital environments during a disease outbreak (8).
The looming COVID-19 crisis has heightened the need to create awareness about the importance of addressing the health literacy of individuals, communities, health organisations and health systems. The COVID19 crisis exposed the existing health inequity, overwhelmed the public health system and revealed a parallel threat, "the global infodemic".
Infodemic has infiltrated the current media and communication environment with excess misleading and harmful information, resulting in the lengthening of the COVID19 pandemic.
Infodemic is affecting people's ability to access the correct information at the right time. It is weakening the public's trust in the healthcare system. It further creates confusion and affects the health decision-making ability of individuals and communities, and further contributes to vaccine hesitancy.
To tackle this infodemic, a health literacy approach will be crucial. It can help understand the strengths and challenges that individuals and communities face to make decisions about their health and those around them.
Understanding health literacy strengths and challenges will help co-design context-specific, culturally relevant and locally responsive solutions to support individuals and communities in making healthy lifestyle choices to protect them and their families from the growing burden of the COVID19 pandemic.
Health literacy is a critical determinant of health; thus, it is crucial to invest in its development throughout the life course at individual, community, national, and global levels.
Some potential solutions can be:
It will help ensure that the future generation has appropriate skills to make informed and evidence-based decisions to improve their health from the early stages of life positively.
For example, in the present pandemic scenario, young children and adolescents are aware of preventative measures to reduce the transmission of COVID19. Thus, if we provide an excellent supportive environment, these practices can be incorporated into lifelong learning behaviour, which may help reduce the incidence and impact of other communicable diseases in the future.
It will help ensure that the leaders (religious and cultural) and decision-makers are aware of basic principles of public health and the health issues and their negative impact on the social and economic development of individuals, communities, and the broader society.
The health literacy of decision-makers can play a crucial role in enhancing the responsiveness of a health system to meet the changing health needs of individuals and communities effectively. It can help to ensure equitable distribution of resources to ensure no one is left behind.
For example, poor health literacy responsiveness and a materialistic approach from leaders and organisations in some countries contribute to misguiding instructions on using masks after the COVID19 vaccination. In addition, it contributes to vaccine inequity (by not supplying enough vaccines to low- and middle-income countries), which will result in the delayed achievement of herd immunity and will result in an extreme impact on socio-economic recovery globally.
Thus, addressing the health literacy of decision-makers is crucial to ensure that the low-income countries and vulnerable people of the society have sufficient and timely access to effective COVID19 vaccinations to achieve herd immunity which is vital to overcome this pandemic.
Understanding health literacy strengths and challenges of individuals and communities provide insight into which solutions are working and which are not working.
The health literacy approach allows us to engage all the potential stakeholders in planning, designing and implementing innovative, context-specific and locally relevant solutions capable of meeting changing demands of the population.
For example, using appropriate communication tools (digital or traditional) to reach the desired population to inform them about the changing nature of COVID19 and the availability of services (vaccines and RT-PCR investigation) to reduce its growing burden. For young people with a high degree of access to digital technology, appropriate social media and mobile applications can play a crucial role in establishing effective communication with them.
Celebrities and sports personalities are role models for many children and young people. Children and young people often try to follow their lifestyle practices.
Engaging these influencing people in health education campaigns to promote healthy lifestyle practices will help to enhance the reach and uptake of preventive health services.
For example, engaging influencing stars in education campaigns regarding the importance of vaccination can help to enhance uptake of COVID19 vaccination among various population groups. This is an example of a health literacy responsive solution. It utilises a context-specific approach to reach the desired population.
Health literacy is a critical determinant of health. It can play a crucial role in overcoming vaccine hesitancy and the infodemic. It can empower individuals and communities to make informed decisions about their health.
I believe a health literacy approach allows us to engage potential stakeholders to design and implement context-specific and locally relevant solutions that can respond to changing health needs of the target population.
Most importantly, it will help to reach people who are already missing out on existing services. Thus, it can play a crucial role in reducing the current health divide and ending the pandemic.
West African Lead, ALMA Youth Advisory Council/Zero Malaria Champion
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Dear Digital Diary,
I realized that there is an unquestionable comfort in being misunderstood. For to be understood, one must peel off all the emotional layers and be exposed.
This requires both vulnerability and strength. I guess by using a physical diary (a paper and a pen), I never felt like what I was saying was analyzed or judged. But I also never thought I was understood.
Paper does not talk back.Using a daily digital diary has required emotional strength. It has required the need to trust and the need to provide information to be helped and understood.
Using a daily diary has needed less time and effort than a physical diary as I am prompted to interact through mobile notifications. I also no longer relay information from memory, but rather the medical or personal insights I enter are real-time behaviours and experiences.
The interaction is more organic. I also must confess this technology has allowed me to see patterns in my behaviour that I would have otherwise never noticed. I trust that the data I enter is safe as it is password protected. I also trust that I am safe because my doctor and nutritionist can view my records in real-time.
Also, with the data entered being more objective and diverse through pictures and voice recordings, my treatment plan has been better suited to my needs.
No more elephants in this room