Shedding light on an unknown reality in solid organ transplant patients’ self‐management: A contextual inquiry study

Abstract

Traditional quantitative and qualitative research methods inadequately capture the complexity of patients' daily self-management. Contextual inquiry methodology, using home visits, allows a more in-depth understanding of how patients integrate immunosuppressive medication intake, physical activity, and healthy eating in their daily lives, and which difficulties they experience when doing so. This mixed-method study comprised 2 home visits in 19 purposively selected adult heart, lung, liver, and kidney transplant patients, asking them to demonstrate how they implement the aforementioned health behaviors. Meanwhile, conversations were audio-taped and photographs were taken. Audio-visual materials were coded using directed content analysis. Difficulties and supportive strategies were identified via inductive thematic analysis. We learned that few patients understood what "sufficiently active" means. Physical discomforts and poor motivation created variation across activity levels observed. Health benefits of dietary guidelines were insufficiently understood, and their implementation into everyday life considered difficult. Many underestimated the strictness of immunosuppressive medication intake, and instructions on handling late doses were unclear. Interruptions in routine and busyness contributed to nonadherence. We also learned that professionals often recommend supportive strategies, which patients not always like or need. This contextual inquiry study revealed unique insights, providing a basis for patient-tailored self-management interventions.

Multimorbidity and medication complexity: New challenges in heart transplantation

“…Similar results were found in other chronic conditions . However, urgent interventions are required post‐HTx, since lack of knowledge on medication increases the risk of non‐adherence, poor outcomes, and high‐economic costs …”

The Meaning of Surviving Three Years after a Heart Transplant—A Transition from Uncertainty to Acceptance through Adaptation

“…There are numerous self-management demands recommended by transplant professionals, e.g., being sufficiently active, adhering to medication and dietary guidelines, protecting oneself from infections and the sun, managing symptoms and mastering one’s role and emotions. Fellow organ recipients constitute a vicarious experience, showing that it is possible to perform and recover, but the self-management support from professionals is not always person-centered or perceived as relevant by patients [ 16 ]. Additionally, chronic pain is a well-known problem reported in several recent studies of organ recipients [ 25 , 26 , 27 ] and requires improved clinical attention.…”

“…HTRs identified the transplantation as a transition point between illness and normality, although they recognized that they were in need of further care [ 13 ]. Our basic assumption was that surviving HTx was a transitional process involving moving from a profound sense of uncertainty [ 14 ] to something unknown, while dealing with self-efficacy [ 15 ] and the self-management expectations from transplant professionals, who often recommend support strategies that organ recipients do not always like or need [ 16 ].…”

Adherence is associated with a favorable outcome after lung transplantation

“…A possible explanation for this is that the patients are feeling better and try to live a normal life. Vanhoof and colleaques illustratively describe patients’ difficulties to implement the numerous rules for health behavior after transplantation into their daily routine[50]. We feel that it is crucial to recognize a decline in adherence in time in order to initiate measures to improve adherence, such as intensification of education[17] or implementation of applications for mobile devices[17,51,52].…”