The trajectory of hope and loneliness in rectal cancer survivors with major low anterior resection syndrome: A qualitative study.

PURPOSE: Rectal cancer survivors are often confronted with long-term bowel function impairment, called low anterior resection syndrome. This has a large impact on patients' lives. The aim was to explore the experiences of patients with major low anterior resection syndrome with a specific focus on hope and loneliness.

METHODS

A grounded theory approach was used. Individual semi-structured interviews (n = 28) were performed between 2017 and 2019. Patients were recruited in three hospitals and a call was distributed in two patients' organizations. During data analysis, the constant comparative method and investigators' triangulation was used.

RESULTS

Hope was important at different stages in the trajectory. After treatment patients hoped to pick up their previous life. Confrontation with low anterior resection syndrome was unexpected and patients hoped to manage it through trial and error. They lost hope if further improvement was absent. At that turning point some tried to accept the new lifestyle, others pushed their boundaries and some opted for a permanent stoma. Loneliness presented itself in several layers. Patients experience loneliness due being toilet-bound, changes in their lives and activities outside their homes and the impact on their family life.

CONCLUSION

Assessment of the impact on patients' lives and tailored counselling is possible if healthcare professionals gain more insight into the different layers of loneliness and where the patient is located in the trajectory of hope.