Introduction Patients with advanced ovarian cancer can develop bowel obstruction. Oral intake is limited in these patients and home parenteral nutrition (PN) may be used to meet nutritional requirements. Aim To explore patient and family experience of home PN. Method Ninety-three longitudinal in-depth interviews were conducted with 20 women with ovarian cancer and inoperable bowel obstruction receiving PN, their lay-carers and healthcare professionals. Interviews were transcribed verbatim and analysed thematically influenced by the techniques of Van Manen (1990). Results Women and their relatives viewed PN as increasing length of life and allowing the women to live at home with some normality. However, the treatment was not without problems which may not be acknowledged by healthcare professionals. These included difficulties with activities of daily living, incursions of physical freedom as patients were attached to heavy PN bags and dealing with the bureaucracy associated with PN. Healthcare professionals were working to a patient-centred rather than a family-centred palliative care model, which could be problematic for some families with frail relatives. However, carers coped but emotionally were often left in a vulnerable state. Conclusions For patients and carers the treatment was a life line and they appreciated the extra time the women received. However this was gained through many losses which healthcare professionals need to portray accurately and implement a family-centred palliative care model when appropriate. Nevertheless, patients are prepared to suffer losses in order to continue living. Reference . Van Manen M. Researching lived experience: Human science for an action sensitive pedagogy 1990. London Ont: Althouse Press.
Abstract Background Malnutrition is a problem is 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 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 15 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.
Abstract Background Malignant bowel obstruction is a common complication of ovarian cancer, resulting in limited oral intake. Home parenteral nutrition (HPN) may be offered to patients in this condition to meet nutritional requirements. However, it is not known how they experience being unable to eat. The present study reports how patients related to food when receiving HPN. Methods The investigation was a qualitative study underpinned by phenomenology with women with advanced ovarian cancer in bowel obstruction receiving parenteral nutrition. Interview transcripts were analysed thematically guided by the techniques of Van Manen. Results We recruited 20 women to the study. Participants were interviewed a maximum of four times and a total of 39 in‐depth longitudinal interviews were conducted. Participants could tolerate minimal amounts of food, if they had a venting gastrostomy. Not being able to eat engendered a sense of sadness and loss, and most women found it challenging to be in the presence of others eating. They adopted strategies to cope, which included fantasising about food and watching cookery programmes. These approaches were not a long‐term solution; either participants came to terms with their loss or the strategies became less effective in providing relief. Conclusions Home parenteral nutrition meets the nutritional requirements of patients with malignant bowel obstruction but cannot replace the non‐nutritive functions of food. Healthcare professionals can offer a patient‐centred approach by acknowledging the difficulties that patients may face and, wherever possible, encourage them to focus on the positive benefits of interacting with people rather than the loss of eating on social occasions.
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.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.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.Women and family caregivers reported that the inconvenience and disruption caused by HPN was worth the extended time they had at home.
Abstract ABSTRACT Background Malnutrition is a problem is 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 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 15 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.
'%3e%3cpath fill='%23012169' d='M0 0v30h60V0z'/%3e%3cpath stroke='%23fff' stroke-width='6' d='m0 0 60 30m0-30L0 30'/%3e%3cpath stroke='%23C8102E' stroke-width='4' d='m0 0 60 30m0-30L0 30' clip-path='url(%23b)'/%3e%3cpath stroke='%23fff' stroke-width='10' d='M30 0v30M0 15h60'/%3e%3cpath stroke='%23C8102E' stroke-width='6' d='M30 0v30M0 15h60'/%3e%3c/g%3e%3c/svg%3e)