Background: End-stage renal disease remains challenging to manage in the Saudi Arabian context. Patients with end-stage renal disease and their families are faced with incrementally more complex decisions throughout their treatment journey. There is potential to address this complex decision making through the use of the patient decision aids. However, Saudi Arabia lacks such patient decision aid tools for use in the renal context.
Aim: This thesis explores the educational needs and experiences of patients with end-stage renal disease and/or their family caregivers regarding current advance care planning and shared decision-making practices in a dialysis unit in Tabuk, Saudi Arabia. Subsequently, the study culturally adapts and translates a patient decision aids tool relevant to Saudi Arabian patients with end-stage renal disease and their family caregivers.
Methods: The data were collected in two phases using a pragmatic qualitative research design. Phase 1 involved semi-structured interviews with five end-stage renal disease patients and/or their family caregivers, recruited from a dialysis unit in Tabuk, Saudi Arabia, to explore their educational needs and experiences in communication issues such as advance care planning discussions and the shared decision-making process. Additionally, a modified systematic review in the Muslim context was conducted for an in-depth exploration of these issues. Data from Phase 1 were used to select an evidence-based patient decision aid suitable for adaptation to the Saudi Arabian context. Phase 2 consisted of semi-structured interviews with nine renal care experts and formal discussions with the original authors of the chosen tool Yorkshire Dialysis and Conservative Care Decision Aid. Their feedback was used to inform the cultural adaptation of Yorkshire Dialysis and Conservative Care Decision Aid into the Saudi Arabian context. The adapted tool was then translated into Arabic using a forward-backward technique. Three additional semi-structured interviews were held with experts to assess the content validity of the translated tool and to develop a preliminary implementation plan.
Findings: The findings from participants’ interviews and the modified systematic review indicated that Saudi end stage renal disease patients, and their family caregivers’ as well as other Muslim renal patients' education needs were unmet. Hence, these findings were incorporated in the sense that they reinforced the point that an educational intervention was needed, such as a patient decision aids tools. Such a tool can facilitate communication, improve information reception, and foster informed decisions. Additionally, they can improve shared decision-making practices within Muslim contexts. Consequently, the evidence-based Yorkshire Dialysis and Conservative Care Decision Aid intervention was chosen for cultural adaptation to the Saudi Arabian context. A cultural adaptation of Yorkshire Dialysis and Conservative Care Decision Aid was carried out in phase 2 by combining the expert data and discussions with its authors. Translation was done using a forward-backward technique. Adaptation and translation involved a six version and six subversion iterative process. The content validity test and expert feedback indicated that the adapted Yorkshire Dialysis and Conservative Care Decision Aid was culturally appropriate and acceptable for Saudi Arabian contexts, but the Arabic translation needed to be revised. A preliminary implementation plan was developed in response to all input.
Conclusion: In Saudi Arabia, end-stage renal disease patients and their family caregivers have limited knowledge of end-stage renal disease prognoses and alternative management options for end-stage renal disease. Decision-making around conservative management of end-stage renal disease in Saudi Arabia is insufficient, rendering the shared decision-making process complex and challenging. To facilitate the decision-making process, the Yorkshire Dialysis and Conservative Care Decision Aid intervention was adapted successfully to the Saudi Arabian context. However, the findings suggest that further testing of validity and acceptability should involve a larger sample size that includes renal patients, caregivers and healthcare providers to confirm the reported findings. Moreover, further research is needed to examine how the adapted tool is implemented and delivered, as well as the barriers that may arise within healthcare settings.
