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

• Published in: European journal of oncology nursing : the official journal of European Oncology Nursing Society Vol. 58; p. 102143
• Main Authors: Pape, E., Decoene, E., Debrauwere, M., Van Nieuwenhove, Y., Pattyn, P., Feryn, T., Pattyn, P.R.L., Verhaeghe, S., Van Hecke, A., Vandecandelaere, Pieter, Desnouck, Simon, Dejonckheere, Dominiek, Debleu, Charlotte, Leupe, Tomas, Deseyne, Pieter, Geboes, Karen, Van de Putte, Dirk, van Ramshorst, Gabrielle H., Vlerick, Isabel
• Format: Journal Article
• Language: English
• Published: Scotland Elsevier Ltd 01-06-2022
• Subjects: Grounded theory; Informal caregivers; LARS; Loneliness; Low anterior resection syndrome; Nursing; Qualitative research; Rectal cancer survivorship; Qualitative research; Nursing; Grounded theory; LARS; Rectal cancer survivorship; Loneliness; Informal caregivers; Low anterior resection syndrome
• ISSN: 1462-3889; 1532-2122
• DOI: 10.1016/j.ejon.2022.102143

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.
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.
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.
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.
•LARS of their partner was overwhelming for the informal caregiver.•Informal caregivers fail to live a normal life because of LARS of their partner.•Informal caregivers experienced loneliness at three levels.•HCPs should understand the impact of LARS on informal caregivers' life.