RESUMO
Living kidney donors (LKDs) undertake a complex and multifaceted journey when pursuing donation and have several unmet healthcare needs. A comprehensive understanding of these needs across their entire donation trajectory can help develop a patient-centered care model. We conducted a scoping review to synthesize empirical evidence, published since 2000, on LKDs' experiences with healthcare from when they decided to pursue donation to postdonation care, and what they reported as their care needs. We categorized them according to the 8 Picker principles of patient-centered care. Of the 4514 articles screened, 47 were included. Ample literature highlighted the need for (1) holistic, adaptable, and linguistically appropriate approaches to education and information; (2) systematic, consistent, and proactive coordination and integration of care; and (3) self-management and preparation to optimize perioperative physical comfort. Some literature highlighted the need for (4) better continuity and transition of care postdonation. Two key unmet needs were the lack of (5) a holistic psychosocial evaluation predonation and predischarge to provide emotional support and alleviation of fear and anxiety; and (6) access to specialty and psychosocial services postdonation especially when adverse events occurred. Limited literature explored the principles of (7) respect for patients' values, preferences, and expressed needs; and (8) involvement of family and friends as caregivers. We summarize several unmet healthcare needs of LKDs throughout their donation journey and highlight knowledge gaps. Addressing them can improve their well-being and experiences, and potentially address inequities in living kidney donation and increase living donor kidney transplantation.
RESUMO
INTRODUCTION: Despite the lauded benefits of living kidney donation, there is growing evidence of the challenges that living kidney donors (LKD) encounter in their donation trajectory and gaps in healthcare service provision. However, most of the evidence is derived from research conducted by clinicians or academic investigators. Significantly less attention has been devoted to analyzing unsolicited accounts of LKDs' experiences. METHODS: We conducted a review and synthesis of published unsolicited first-person narratives of LKDs and aimed to synthesize their experiences and identify care needs. Four electronic databases were searched and 27 LKD narratives were included in our final analysis. Thematic synthesis was used to generate themes inductively. RESULTS: Although the majority of LKDs reported the act of donation to be a fulfilling experience, almost 48% reported encountering challenges in the care that they received. Also, 29% of LKDs reported experiencing an adverse clinical event. Five distinct themes emerged surrounding the donation experience and healthcare needs: 1) Educational needs due to perceived lack of transparency and compensating for knowledge gaps; 2) Respect for donor autonomy due to coercive influences from family or healthcare providers, lack of respect for donor preferences and loopholes in the consent process; 3) Unmet care needs related to poor communication with healthcare providers, coordination issues and inconsistent and inadequate long-term care; 4) Unanticipated outcomes due to economic costs and the emotional burden of donation; and 5) Contributing beyond the donation event by advocating for a balanced view of donation and generating support mechanisms. CONCLUSION: In this synthesis of LKDs narratives, important care gaps and the need to advocate for a balanced perspective on living kidney donation were highlighted. Our review underscores the value of patients' own stories as critical evidence that can inform improvement in healthcare service delivery.
