For my first PFU engagement, I conducted a home visit with Lerato (pseudonym), an 18-year-old who underwent a liver transplant at 13 for Autoimmune Hepatitis (AIH). The visit took place in her family's living room, which provided a comfortable and informal setting. We discussed her medical journey, from her initial diagnosis in Grade 2 after a teacher noticed her jaundice, to her transplant at Donald Gordon Hospital. She described her current regimen of immunosuppressants (Prednisone, Prograf, Cellcept) and insulin for steroid-induced diabetes. She detailed significant side effects, including weight gain, hair loss, and debilitating fatigue that forced her to give up sports. She also revealed a past rejection episode after stopping her medication during her Grade 12 finals.
This initial home visit was crucial for establishing trust and understanding Lerato's illness within the context of her personal life. The informal setting allowed her to speak openly about the profound impact of AIH on her adolescence. Her narrative was not just a clinical history; it was a story of disrupted normalcy and identity formation. The rejection episode was a pivotal moment that highlighted the intense conflict between the psychological pressure to perform academically and the biological need to adhere to treatment. This perfectly illustrates the biopsychosocial model (Engel, 1977), where medical, personal, and social factors are deeply intertwined. Hearing this in her home made the realities of her daily struggle more tangible than it would have been in a clinic.
The home visit was immensely valuable for building a strong foundational rapport. Being in her personal space helped Lerato feel more at ease, leading her to share sensitive information about her non-adherence. A key strength was the focus on her lived experience, which provided context far beyond what a chart review could offer. A challenge was navigating the emotional weight of her story as a first-year student, ensuring I provided a supportive presence without overstepping my role. The visit successfully humanized the long-term management of a complex chronic condition.
For our next session, I will research the specific immunosuppressants she takes to better understand their mechanisms and common side effects. I aim to create a genogram with her to explore any genetic components she mentioned. I also plan to arrange to accompany her to one of her clinical appointments to observe her interaction with the healthcare system and her medical team.
My second engagement involved accompanying Lerato to her monthly outpatient appointment at Charlotte Maxeke Hospital. I observed her consultation with her hepatologist. The doctor reviewed her recent blood tests, noting that her liver enzymes were stable but her HbA1c for diabetes was elevated. The consultation was brisk, focusing on medication dosage and the importance of adherence. Lerato was quiet, nodding but not asking the questions we had discussed beforehand. After the doctor left, she expressed frustration that her concerns about the side effects of Prednisone, particularly the weight gain and mood swings, were not fully addressed due to time constraints.
Observing this clinical interaction was a stark lesson in the challenges of healthcare delivery within a busy public system. The pressure of time created a barrier to patient-centered communication. While the doctor was clinically thorough, the rapid pace did not allow space for Lerato's psychosocial concerns. Her silence during the consultation, contrasted with her frustration afterward, illustrates a common power dynamic where patients, especially young ones, may feel hesitant to vocalize their needs. This experience directly connects to the Batho Pele principle of "Courtesy," which entails creating an environment where patients feel empowered to speak up. It highlighted the gap between biomedical management and holistic, patient-centered care.
This visit was critical for understanding the systemic constraints on chronic disease management. It effectively demonstrated the difference between a consultation focused on disease parameters and one focused on the person with the illness. A strength was my ability to debrief with Lerato afterwards, allowing her to voice the concerns she couldn't in the consultation. A challenge was my limited role as a student observer, unable to facilitate the conversation in the moment. The experience underscored the vital role of interdisciplinary teams, suggesting that a dedicated session with a clinical psychologist or dietitian might better address her quality-of-life concerns.
I will discuss communication strategies with Lerato, such as writing down her top three questions before her next appointment to ensure they are asked. I will also research the support services available at the hospital, such as psychology or diabetes education, and provide her with that information. For our next meeting, I will conduct another home visit to create an ecomap, focusing on her support systems and stressors.
For my third visit, I returned to Lerato's home to create an ecomap with her. We visually mapped her key relationships: a strong but stressful connection to her overly protective parents, strained links with peers who don't understand her condition, and a central, demanding relationship with the healthcare system. She spoke about the "invisible burden" of fatigue and brain fog, which isolates her socially. She also revealed past pressure from extended family to use traditional herbal medicine instead of her prescribed immunosuppressants, a conflict she had to navigate from a young age.
The ecomap transformed abstract challenges into a clear visual of Lerato's social ecosystem. It revealed that her core struggles are psychosocial. The parental over-protection, while born of love, stifles her autonomy as a young adult. The social isolation is a direct result of the invisible nature of her symptoms, a concept often discussed in Medical Humanities (Biro, 2010). The pressure to use traditional medicine is a powerful example of a social determinant of health, where cultural beliefs and family dynamics can directly conflict with evidence-based medical advice, creating significant stress and potential risk.
This session was the most profound in terms of understanding the holistic impact of Lerato's illness. The ecomap was an exceptionally effective tool, facilitating a deeper conversation about loss, stress, and identity. It highlighted a major gap in her care: the lack of structured psychosocial support to help her process these complex issues. My role evolved into that of an active listener, validating her experiences. The visit underscored that for a young person, chronic illness is as much about the disruption of developmental milestones as it is about managing physical symptoms.
I will compile information on support groups for young adults with chronic illnesses that offer online forums or meetings. I will also research strategies for communicating with family members about chronic illness to help her articulate her needs to her parents. In our final session, I will focus on consolidation and empowerment, discussing her goals and how she can be a stronger advocate for her own holistic well-being.
Our fourth and final session was a consolidation meeting at her home. We reviewed the genogram and ecomap we had created, and Lerato reflected on how verbalising her journey over our meetings had been therapeutic. We discussed her advice for newly diagnosed patients: "Take your medication daily," "do your own research," and "you are your own best advocate." She reiterated her desire for doctors to better understand medication side effects. We ended by discussing her hopes for starting university and managing her health independently, and I provided her with a simple, summarized information sheet I had created on managing fatigue and nutrition with AIH.
This final session marked a clear transition. Lerato moved from being a subject of inquiry to an expert in her own condition, embodying the concept of the "expert patient." Her advice underscores the principles of patient empowerment and lifelong learning. Her request for more patient-centered management of side effects is a call for healthcare that prioritises quality of life, not just biochemical outcomes. This aligns with the PFC course objective of fostering socially conscious health advocates; through our longitudinal relationship, Lerato has strengthened her own voice and is now equipped to advise others.
The longitudinal nature of this PFU was its greatest strength, allowing me to witness Lerato's growing self-awareness and confidence. This final visit successfully synthesized all our previous discussions into a forward-looking plan. Her articulate advice to future doctors was a powerful culmination of our work together. A personal success was being able to provide her with a tangible resource (the information sheet) as a small contribution to her self-management. The entire experience was invaluable in demonstrating the power of continuity in building the trust necessary for meaningful, reflective conversations.
This experience has solidified my commitment to practicing interdisciplinary, patient-centered medicine. I will carry Lerato’s lessons forward: to always inquire about the personal and social impact of treatment, to view patients as partners in their care, and to actively use tools like ecomaps to understand the broader context of a patient's life. I plan to further develop my skills in adolescent health and motivational interviewing to better serve future patients like Lerato.