Experiences and needs of partners as informal caregivers of patients with major low anterior resection syndrome: A qualitative study.

PURPOSE: After treatment, many rectal cancer survivors are confronted with ongoing bowel problems, called low anterior resection syndrome. The cancer diagnosis and treatment poses a burden on informal caregivers and results in higher levels of psychological distress and loneliness which is persistent after treatment as well. Our study aimed to investigate the experiences and needs of partners as informal caregivers of patients with major low anterior resection syndrome. METHODS: A ground theory study was conducted. Semi-structured interviews with partners as informal caregivers of patients with major low anterior syndrome were performed in three hospitals between 2017 and 2019. In the first phase, maximum variation sampling was used and later theoretical sampling. Data analysis was done using the constant comparative method and investigators triangulation. RESULTS: Twenty partners as informal caregivers were interviewed until data saturation. Low anterior resection syndrome of their partner was overwhelming and they failed to live a normal life. They had the feeling that they stood at the side-line and partly because of that felt lonely. Partners experienced three levels of loneliness: because of their changed own life, the changed life of their partner and the changed life in the environment. CONCLUSION: Low anterior resection syndrome has a large impact on the lives of partners as informal caregivers and induces loneliness at three levels. It is key that the HCPs of the interdisciplinary team understand this impact. A clinical nurse specialist/oncology nurse navigator could help in alleviate that burden by addressing both patients' and partners' needs.

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.