Department of Gastrointestinal Surgery, Ghent University Hospital, Ghent, Belgium.
Cancer Centre, Ghent University Hospital, Ghent, Belgium.
Eur J Oncol Nurs. 2022 Jun;58:102143. doi: 10.1016/j.ejon.2022.102143. Epub 2022 Apr 18.
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.
治疗后，许多直肠癌幸存者面临持续的肠道问题，称为低位前切除综合征。癌症的诊断和治疗给非专业照顾者带来了负担，并导致更高水平的心理困扰和孤独感，这种困扰在治疗后仍然存在。我们的研究旨在调查主要低位前切除综合征患者的伴侣作为非专业照顾者的经历和需求。
采用扎根理论研究方法。在 2017 年至 2019 年期间，在三家医院对主要低位前综合征患者的伴侣作为非专业照顾者进行了半结构化访谈。在第一阶段，采用最大变异抽样，随后进行理论抽样。使用恒定比较法和研究者三角测量法进行数据分析。
对 20 名作为非专业照顾者的伴侣进行了访谈，直到数据饱和。他们感到伴侣的低位前切除综合征令人难以承受，他们无法过上正常的生活。他们有一种站在边缘的感觉，部分原因是感到孤独。伴侣经历了三个层次的孤独：由于他们自己生活的改变、伴侣生活的改变和环境生活的改变。
低位前切除综合征对非专业照顾者伴侣的生活产生了重大影响，并导致了三个层次的孤独感。跨学科团队的 HCP 必须了解这种影响。临床护士专家/肿瘤学护士导航员可以通过满足患者和伴侣的需求来帮助减轻这种负担。
