Self-care of patients with an intestinal stoma : perspectives of patients and healthcare provider support in the Malaysian healthcare setting

Abstract

An intestinal stoma is a life-saving surgical procedure for patients with gastrointestinal disorders. However, living with a stoma presents significant physical and psychosocial challenges, making effective self-care essential for improving patients’ quality of life. Given the complex nature of stoma care, the involvement of Healthcare Providers (HCPs) is pivotal in fostering patient empowerment and supporting meaningful engagement in self-care activities. This study aimed to explore the self-care experiences of patients living with an intestinal stoma and the support provided by healthcare providers in the Malaysian healthcare context. A qualitative research design underpinned by pragmatism paradigm was employed. Data were collected through semi-structured interviews, supported by observation and document analysis. The study was conducted at the Surgical Outpatient Department of Hospital Kuala Lumpur between August 2023 and July 2024, involving 17 patients with an intestinal stoma and 15 HCPs. The data were analysed using framework analysis, which comprises data management, descriptive, and explanatory accounts. The analysis identified five major themes from the patients’ perspective: dealing with physical discomfort, dealing with emotional and psychological discomfort, support offered by HCPs and the healthcare context, and factors that influence self-care engagement. From the HCPs' perspective, two key themes emerged: the role of HCPs in self-care support and the barriers in support provision for patients with a stoma. In addition, the study identified two central issues affecting patients with an intestinal stoma: struggling to adapt to the new self-care routine and the interpretation of the role of Patient-Centred Care (PCC) in supporting the self-care of patients living with an intestinal stoma. In conclusion, the study underscores the complex nature of self-care for patients with an intestinal stoma, shaped by a range of enabling and inhibiting factors. While HCPs made commendable efforts in equipping patients with knowledge and guidance on managing the physical aspects of stoma care in the early recovery phase, support for patients' emotional and psychological well-being, as well as long-term care, was reported to be lacking. The findings call for enhancements in current support nursing practices, advocating for a more holistic, patient-centred approach that addresses both the physical and psychosocial dimensions of living with a stoma.