Understanding the Decision-Making Process for Haemodialysis Refusal in Oman: A Grounded Theory Approach.

Al Zadjali, Said

Abstract

Background: Haemodialysis (HD) is an invasive routine life-sustaining therapy for End-Stage Kidney Disease (ESKD) individuals, and it remains the common modality of Kidney Replacement Therapy (KRT). ESKD is a permanent kidney failure due to complete or nearly complete loss of kidney function and the ability to eliminate waste and excess water from the body (Griva et al., 2013). Worldwide, ESKD results in a great burden on the healthcare system and has become a major public health problem (Li et al., 2021). The decision to initiate haemodialysis is generally made by the treating nephrologist alone; however, this decision cannot be acted upon without the individual's explicit permission, as their consent is crucial to proceeding with dialysis. Professional experience and published evidence have demonstrated that a proportion of individuals living with ESKD refuse HD as a treatment option, though quantitative data on prevalence are not available.
However, the decision to refuse HD is multifaceted and poorly understood, especially in Arab regions, including Oman.
Aim: To explore and understand the reasons underpinning the decision to refuse haemodialysis from the individuals affected by ESKD perspective in Oman.
Methodology: A qualitative study design, utilising a constructivist grounded theory approach (Charmaz, 2006), was employed to explore the research questions. The eligible participants were adults aged eighteen and above with stage five ESKD and no history of mental illness. Data collection took place in nephrology outpatient clinics and kidney dialysis units across eleven governmental hospitals under the Ministry of Health in Oman. Childress's (2019) ethical framework was applied to safeguard participant rights and uphold ethical standards throughout the study. Data were collected between October 2021 and April 2022 through in-depth, semi-structured interviews using an interview guide, with each interview lasting 30 to 60 minutes. The interviews were transcribed verbatim and translated into English. Analysis used constant comparative method, including line-by-line and axial coding, as outlined by Charmaz (2006), to enhance understanding of the social processes related to the decision to refuse haemodialysis and to facilitate categorisation.
Results: Research data indicate that twenty-seven participants’ decision-making was a continuous and revisited process influenced by various factors that led to the refusal of haemodialysis. A significant knowledge gap was evident among those who declined haemodialysis, attributed to communication barriers with physicians, insufficient information about ESKD at stage five and haemodialysis, challenges in verifying information, and a tendency to selectively interpret information. Participants were also affected by the experiences of haemodialysis users, as well as input from family and peers.
Fear played a critical role in the decision-making process, driven by concerns over the potential negative consequences of haemodialysis and the associated stigma. A desire for self-control was another influential factor, leading some to seek alternatives and adopt a fatalistic perspective. From the data analysis, a grounded theory of haemodialysis refusal decision-making process was developed to outline the decision-making process for individuals with ESKD who choose to refuse haemodialysis. This grounded theory consisted of five categories: self-conceptualisation, information access, influencers, fear, and self-control.
The theoretical framework demonstrated how individuals balanced perceived benefits and risks, engaging in self-management, seeking second opinions, or relying on the advice of others while attempting to delay dialysis. Many participants were in a state of 'denial,' viewing themselves as healthy due to the absence of noticeable ESKD symptoms and opting to continue with oral medications. A few, however, considered kidney transplantation as an alternative option.
Conclusion: Omani individuals with ESKD in this study faced various factors and behaviours that influenced their decision-making, leading them to reassess and reinforce their choice to refuse haemodialysis. Denial and fatalism were the most prominent behaviours observed. Participants exhibited a limited understanding of their condition and its complications, highlighting the need to assess the quality and method of information provided, taking into account their values, beliefs, and preferences. A personalised, patient-centred approach may be more effective than a conventional disease-oriented strategy for this population. Multidisciplinary teamwork is crucial to developing effective and ongoing education and interventions, fostering a comprehensive approach to treatment acceptance and improved health outcomes. Early pre-dialysis education and shared decision-making are vital for enabling timely interventions.

Citation

Al Zadjali, S. (2025). Understanding the Decision-Making Process for Haemodialysis Refusal in Oman: A Grounded Theory Approach. (Thesis). University of Hull. https://hull-repository.worktribe.com/output/5086170

• Thesis Type: Thesis
• Deposit Date: Mar 20, 2025
• Publicly Available Date: Apr 14, 2025
• Keywords: Nursing
• Public URL: https://hull-repository.worktribe.com/output/5086170
• Additional Information: Nursing Studies; Faculty of Health Sciences; University of Hull
• Award Date: Jan 7, 2025