The Future is Now: Co-Creation Workshop on Severe NCDs - A Pathway to Change

-

 

Background

On June 22, 2024, we held a transformative co-creation workshop at the UNICEF offices in Harare, bringing together over 60 participants, including healthcare professionals (Medical Doctors and Nurses), school teachers, civil society organizations leaders, renowned NCDs Advocates, children and parents living with severe non-communicable diseases (NCDs) such as Type 1 Diabetes, Sickle Cell Disease, Congenital/Rheumatic Heart Disease, and those impacted by Asthma. This significant milestone marked a strategic shift in focus from communicable diseases to NCDs, highlighting the evolving health landscape and the pressing need to address these chronic conditions that affect many lives. Our primary aim was to build a supportive community, amplify the voices of those living with NCDs, and bridge the gap between healthcare providers and patients.

Introduction

The workshop was more than just a meeting; it was a crucial moment for advocacy and collaboration. Participants engaged in deep, meaningful discussions, sharing their experiences, challenges, and potential solutions. The bravery and insights of the children living with these conditions, who shared their thoughts and lived experiences, emphasized the necessity of listening to and learning from those most affected. This gathering set the stage for future initiatives aimed at improving the lives of those with severe NCDs, identifying practical strategies and policy recommendations to enhance support systems, raise awareness, and ensure that the needs of these individuals are met with compassion and efficiency.

Setting the Stage: A Shift in Focus

Historically, much of the healthcare focus has been on communicable diseases. However, the rising tide of NCDs demands urgent attention. This workshop marked a pivotal shift towards addressing these chronic conditions, which affect children and their families profoundly. Our aim was clear: to create a platform where the lived experiences of those battling severe NCDs could shape the future of healthcare policies and practices.

Diverse Voices, Unified Goals

The workshop brought together a diverse group of participants, including healthcare professionals (HCPs), parents, children living with NCDs, and representatives from patient organizations. This diversity was crucial as it ensured that every perspective was heard, from the medical complexities of managing these conditions to the everyday challenges faced by families.

Key Expectations and Outcomes

Participants came with varied expectations, including:

  • Connecting with others facing similar challenges.
  • Sharing experiences, problems, and solutions.
  • Bridging the gap between doctors and patients.
  • Collaborating to raise awareness and advocacy.
  • Amplifying the voices 

These expectations underscored the necessity of a holistic approach to NCD management, one that includes medical, emotional, and social dimensions.

Challenges Unveiled

The discussions highlighted numerous challenges faced by children living with severe NCDs:

  • Mental Health: The psychological burden of chronic illness is immense, often leading to feelings of isolation and anxiety.
  • Diet and Insulin Management: For those with T1D, managing insulin and maintaining a proper diet are daily struggles, exacerbated by a lack of understanding in schools and communities.
  • Stigma and Awareness: Misconceptions about NCDs persist, leading to stigmatization and inadequate support systems.
  • Accessibility and Affordability: The high cost of medications and medical devices, such as insulin pumps, remains a significant barrier.

Parents echoed these challenges, adding issues like absenteeism in schools, loss of jobs due to repeated hospitalizations, and the broader social impacts on family life.

Sources of Information and Misconceptions

Participants identified their main sources of information: doctors, internet, clinics, family, and WhatsApp groups. While these sources are invaluable, they also highlighted the spread of misinformation, particularly on social media, where unverified health tips can cause more harm than good.

Raising Awareness and Building Support Networks

The workshop underscored the importance of raising awareness and building robust support networks. Participants proposed various methods to increase awareness:

  • Psychosocial Support: Reducing stigma through targeted campaigns and education.
  • School Curriculum Integration: Incorporating NCD education in schools to foster understanding from an early age.
  • Community Engagement: Involving local leaders, schools, and religious organizations to spread accurate information.
  • Media Campaigns: Utilizing social media, TV, radio, and print media to reach a wider audience.

Building Networks for Sustainable Change

To create sustainable support networks, participants recommended:

  • Decentralizing NCD Clinics: Making services available in remote areas.
  • Regular Meetings and Workshops: Facilitating bi-monthly gatherings for children, parents, and HCPs to share knowledge and support.
  • Leveraging Technology: Using WhatsApp groups and Zoom for continuous engagement.
  • Collaboration with Influential Figures: Engaging community leaders, educators, and healthcare professionals to cascade information.

Call to Action

As we move forward, it's imperative that we not only acknowledge the voices of children and families living with severe NCDs but also act decisively on their needs. Join us in this transformative journey by advocating for policy changes, participating in community outreach, and supporting our initiatives. Together, we can create a more inclusive and supportive environment for these resilient individuals. Your involvement, whether through raising awareness, volunteering, or contributing resources, can make a significant difference. Let’s build a network that empowers and uplifts every child and family affected by NCDs.

Group photo

Conclusion

The co-creation workshop was more than just an event; it was a powerful testament to the strength and resilience of our community. The stories shared, the connections made, and the solutions proposed have laid a robust foundation for future advocacy and support. We are not just looking at a brighter future—we are actively shaping it. This workshop has ignited a spark that will drive us toward greater inclusivity, understanding, and action. Let us carry this momentum forward, remembering that every step we take together brings us closer to a world where every child with an NCD can thrive without barriers. The future is now, and it is ours to create.

Comments

Post a Comment

Popular posts from this blog

From Diagnosis to Determination: Rejoice's Journey with Type 1 Diabetes

-
Image
  Rejoice Tsingano I can still vividly remember the pivotal moment in 2018 when I stood in front of the mirror and noticed something startling: my school uniform no longer fit as it once did. "Wait a second, did I just lose some weight?" I asked myself, drawing closer to the mirror to confirm. To my surprise and delight, I had indeed shed a few pounds—a goal I had long aspired to achieve. Little did I know that this unexpected weight loss was a signal of something far more serious. My name is Rejoice Tsingano, and I was diagnosed with type 1 diabetes on August 8, 2018. But let me take you back a bit further. Two months before my diagnosis, I began to notice the first symptoms: rapid weight loss and a dramatic change in my complexion, which had become so light that people around me speculated I might be bleaching my skin. All of this unfolded while I was attending boarding school in Zvishavane during vacation lessons, preparing for my final O-level exams. Had I been at home, p...
Read more

Empowering Lives: A Transformative Diabetes Camp in Zimbabwe

-
Image
  In an unparalleled event aimed at tackling the growing challenges faced by individuals living with type 1 diabetes in Zimbabwe, a transformative camp was held, bringing together over 100 people living with type 1 diabetes (T1D) and more than 20 parents and guardians. This gathering was not just a camp but a beacon of hope, education, and community for those who have long been navigating the complexities of life with T1D in a landscape that often feels isolating and overwhelming. Setting the Stage: A Wake-Up Call The camp began with a keynote address that vividly exposed the stark and pressing realities of diabetes care in Zimbabwe. This address was more than just an opening—it was a call to action, emphasizing the urgent need to tackle the multifaceted challenges that people living with Type 1 diabetes face daily. The address brought to light critical issues such as pervasive discrimination, chronic shortages of insulin, inadequate diabetes education, and the desperate need for c...
Read more

Breaking Barriers: fighting for our daughter's disability rights in U.S. Schools

-
Image
Coral, T1D since 03/16 Welcome to our guest blog, where we have the honor of featuring the insightful perspective of Shelsea Deng , a dedicated advocate for children with chronic conditions. In this compelling piece, Shelsea shares her journey advocating for her daughter, Coral, who was diagnosed with autoimmune Type 1 diabetes at a very young age. Through her experiences, Shelsea sheds light on the challenges faced by families dealing with chronic conditions in the education system. Shelsea, Coral & Kaila In your experience, how has stigma and discrimination affected your child's education and daily life? My first-born daughter, Coral, was diagnosed with autoimmune Type 1 diabetes at 15 months old on March 11, 2016, back home in Oahu, HI. Type 1 diabetes is very rare among Asians and even rarer in Native Hawaiians (we are part of the "AANHPI" community and also part Native American). Consequently, I have often been confronted with a barrage of questions and misconcep...
Read more