Participatory Medicine

Experience as a Patient Advocate

COMPLETE DATA - 3 Years Old child, Type1 Diabetes, Insulin Hypoglycemia, Intermittent, Bloating 1 Month

https://narmeenshah.blogspot.com/2024/07/3-year-old-child-type1-diabetes-insulin.html

Good:

• In this journey of participatory medicine, the primary caregiver of this patient has exemplified exceptional engagement by consistently and diligently sharing detailed data about the patient's condition. Despite the patient belonging to a vulnerable population, 3 year old child with diabetes and hypoglycemia unawareness, who is unable to communicate her needs directly the family has ensured no gaps in communication. This proactive collaboration from the family, synchronous & asynchronous support from the healthcare team has made timely management of the critical disease and improvements in care possible.
  
  
• The family feels more hopeful and educated in managing their child’s health appropriately, with the transparency of the treatment encouraging greater involvement & demonstrating the power of participatory care in tackling challenging health conditions.

Challenges:

• Given that the patient is a vulnerable 3 year old with diabetes and hypoglycemia unawareness, managing the condition independently would have been extremely difficult. The complexity of the child’s needs especially the inability to communicate symptoms directly requires continuous family participation, as there is no alternative for consistent monitoring and decision-making. Without this critical support, the management of the condition would have faced significant barriers.

43F Diabetes on insulin 10yrs, Hypothyroid 6yrs, HTN bilateral pedal edema 4 months

https://narmeenshah.blogspot.com/2024/11/43f-diabetes-on-insulin-10-yrs.html

Good:

• Despite facing multiple complex health issues, the patient and primary caregiver made efforts to manage her condition by reporting her progress & seeking timely advice.

Challenges:

• The patient’s primary caregiver did not reside with her, leading to delays in active participation and creating barriers to seamless care coordination. This underscores the pressing need for systemic solutions to support patients lacking nearby familial support.
   
• The patient’s family exhibited hesitation in asking basic questions or clarifying doubts, reflecting a cultural norm embedded in them where patients are often reluctant to voice concerns or seek explanations. Addressing such cultural or behavioral barriers is a critical step in promoting true participation in healthcare.
  
  

70f "Gabrahat"

Transnational Political Barriers

This patient’s family member was initially afraid to engage because of the political tension between our borders. Their concern centered on whether exchanging information across borders was safe or not & even talking cross-border was threat to security or not.

Good:

• Upon understanding the nature of the work, individuals expressed profound excitement and gratitude. For them, the realization that healthcare initiatives could transcend political boundaries brought a sense of connection enhancing the quality of care.
  
  
• Demonstrating how healthcare can act as a bridge between communities, offering support amidst political tensions.

Challenges:

• The initial hesitancy and fear from the family member due to political tensions highlighted the complexity of handling transnational political barriers in healthcare & fragility of trust-building in politically sensitive contexts.