Healthcare experiences of patients following faecal output stoma-forming surgery: a qualitative exploration

Abstract

Background: Approximately 102,000 individuals live with an excretory stoma in the UK. Existing research shows huge variation in how individuals experience living with a new stoma but little is known of the individual experience of contemporary health care from the patient perspective.

Objective: To explore the individual experience of living with a new stoma and interactions with healthcare over time with the purpose of informing health care services.

Design: An existential phenomenological methodology underpinned interviews with twelve people with a new stoma at three, nine and fifteen months post-surgery. Ten healthcare professionals were interviewed on one occasion to provide adjunct data.

Methods: Open one-to one exploratory interviews lasting 35-90 min were conducted by one researcher using topic guides. A five-staged analytical framework facilitated iterative scrutiny of data to give a universal understanding of the experience.

Results: Three themes of healthcare experiences of people following stoma-forming surgery were identified: Relationships with health care professionals; being prepared; and regaining autonomy. They revealed how building a new sense of embodied self and increasing social confidence was facilitated by regaining physical capacity, mastering stoma function, purposeful care, and acceptance and support of others. Some conflict between the role of specialist and ward-based nurses is highlighted. Provision of responsive healthcare from all disciplines helped to establish patient self-determination in adaptation to and acceptance of self-with-a-stoma.

Conclusions: The study contributes to defining a plan of care that assists individuals with a new stoma to adapt to and accept a changed sense of embodied self. It highlights the powerful influence of health care professionals in facilitating this process through their knowledge, experience and individual approaches to care. There is an identified need for on-going review of the work of nurses and others providing care for patients following stoma-forming surgery. The findings of this UK study can have resonance with patient healthcare experiences in other countries, if, despite cultural differences in delegation of professional duties and responsibilities, the global aim is to facilitate meeting individual patient needs.

Keywords: Delivery of health care; Patient-centred care; Qualitative research; Surgical stoma.