BACKGROUND Malnutrition is a problem in advanced cancer, particularly ovarian cancer where malignant bowel obstruction (MBO) is a frequent complication. Parenteral nutrition is the only way these patients can received adequate nutrition and is a principal indication for palliative home parenteral nutrition (HPN). Giving HPN is contentious as it may increase the burden on patients. This study investigates patients' and family caregivers' experiences of HPN, alongside nutritional status and survival in patients with ovarian cancer and MBO. METHODS This mixed methods study collected data on participant characteristics, clinical details and body composition using computed tomography (CT) combined with longitudinal in-depth interviews underpinned by phenomenological principles. The cohort comprised 38 women with ovarian cancer and inoperable MBO admitted (10/2016 to 12/ 2017) to a tertiary referral hospital. Longitudinal interviews (n = 57) were carried out with 20 women considered for HPN and 13 of their family caregivers. RESULTS Of the 38 women, 32 received parenteral nutrition (PN) in hospital and 17 were discharged on HPN. Nutritional status was poor with 31 of 33 women who had a CT scan having low muscle mass, although 10 were obese. Median overall survival from admission with MBO for all 38 women was 70 days (range 8-506) and for those 17 on HPN was 156 days (range 46-506). Women experienced HPN as one facet of their illness, but viewed it as a "lifeline" that allowed them to live outside hospital. Nevertheless, HPN treatment came with losses including erosion of normality through an impact on activities of daily living and dealing with the bureaucracy surrounding the process. Family caregivers coped but were often left in an emotionally vulnerable state. CONCLUSIONS Women and family caregivers reported that the inconvenience and disruption caused by HPN was worth the extended time they had at home.

中文翻译：

---

卵巢癌和恶性肠梗阻患者的姑息家庭肠外营养：妇女和家庭护理人员的经验。

背景技术营养不良是晚期癌症的一个问题，特别是卵巢癌，其中恶性肠梗阻（MBO）是常见的并发症。肠外营养是这些患者能够获得足够营养的唯一途径，并且是姑息性家庭肠外营养（HPN）的主要指征。给予HPN有争议，因为它可能会增加患者的负担。这项研究调查了患者和家庭护理人员对HPN的经历，以及卵巢癌和MBO患者的营养状况和生存情况。方法这项混合方法研究使用计算机断层扫描（CT）结合以现象学原理为基础的纵向深入访谈，收集了参与者特征，临床细节和身体成分的数据。该队列包括38名患有卵巢癌且无法手术的MBO患者（2016年10月2016日至2017年12月12日）进入三级转诊医院。纵向访谈（n = 57）是对20名被认为患有HPN的妇女及其13名家庭照护者进行的。结果38例妇女中，有32例在医院接受了肠外营养（PN），17例因HPN出院。营养状况较差，在接受CT扫描的33名女性中，有31名肌肉质量低，尽管10名肥胖。所有38名妇女通过MBO入院的总体生存中位数为70天（范围8-506），而HPN上的17名患者中位生存时间为156天（范围46-506）。女性将HPN视为其疾病的一个方面，但将其视为使她们能够在医院外生活的“生命线”。尽管如此，HPN治疗伴随着损失，包括通过影响日常生活活动以及处理与该过程相关的官僚机构而损害正常性。家庭照料者应对，但常常处于情绪脆弱的状态。结论妇女和家庭护理人员报告说，由HPN造成的不便和干扰值得延长她们在家里的时间。