Patients' experiences with home parenteral nutrition: A grounded theory study

Wong, Christina; Lucas, Beverley; Wood, Diana

doi:10.1016/j.clnesp.2018.01.005

Cited by 11 publications

(19 citation statements)

References 21 publications

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“…Additionally, the medical devices (infusion pump) limit body movement; over time, the individuals learn to move with them until they finally get used. Results consistent with the study by Wong et al, (19) who used the grounded theory methodology to describe the experience of living with parenteral nutrition at home and a stoma. The authors reported two problems experience by participants with parenteral nutrition; the first is the loss of mobility in the home due to the infusion pump and the nutrition bag; the second is the maintenance of the infusions for long periods of time.…”

Section: Discussionsupporting

confidence: 88%

Meaning of Receiving Artificial Nutritional Support in People in the Postoperative Period of Abdominal Surgery

González¹,

Ramírez²

2020

invest. educ. enferm

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Objective. This work sought to describe the meaningof receiving artificial nutritional support in people in thepostoperative period of abdominal surgery. Methods.This was a qualitative study of grounded theory, followingthe guidelines by Corbin and Strauss. The informationwas collected through 26 in-depth interviews with 21participants, interned in a tier III health care hospital inthe city of Tunja, Colombia. Results. The study describesfour categories, which account for the way in which theperson experiences physical, physiological, emotional,and social changes when receiving artificial nutritionalsupport. The categories include stopping eating andbecoming artificially fed, decreasing the ability to moveto recover movement, experiencing the difficulty of having artificial nutritional support, and reaching the disease to transform life. The dataanalysis shows that the basic surgical pathology and the artificial nutritional supportare sudden events that fragment the daily life of the person. These individualsdemand the mobilization of religious, family, and social resources to strengthen theperson’s internal and external environment and, thus, achieve the health situation. Conclusions. The analysis of the meanings shows how the person reflects andinterprets the reality of receiving artificial nutritional support, an event that hasimplicit physical discomfort, emotional changes, and physical appearance, whichare determinants in the behavior and practice of artificial nutrition. However,artificial nutritional support becomes for the person an alternative to live and recoverthe state of health.

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Section: Discussionsupporting

confidence: 88%

Meaning of Receiving Artificial Nutritional Support in People in the Postoperative Period of Abdominal Surgery

González¹,

Ramírez²

2020

invest. educ. enferm

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“…Patients also cited the support they received from others as a factor that helped them cope. Although other studies have commented on how patients coped with PN, such as trying to integrate it into daily life, they have not drawn strategies together as a coherent theme ( 32,33 ) .…”

Section: Discussionmentioning

confidence: 99%

Short bowel syndrome and the impact on patients and their families: a qualitative study

Sowerbutts

Panter

Dickie

et al. 2020

J Human Nutrition Diet

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Background Short bowel syndrome (SBS) is a malabsorptive condition that can result in intestinal failure (SBS‐IF). Many patients with SBS‐IF require home parenteral nutrition (PN) for survival. However, PN has profound effects on patients and their family members. The present study aimed to understand the lived experience of SBS‐IF for patients and their families. Methods In‐depth semi‐structured qualitative interviews were conducted with 15 patients with SBS‐IF and five adult family members living with someone with SBS‐IF. A patient‐centric approach was taken, with a patient steering group providing input and guidance to develop the interview guide. Key concepts were identified using thematic analysis of interview transcripts. Results Patients’ lives were dominated by having SBS‐IF. They described physical impacts that included patient‐reported signs and symptoms and physical restrictions comprising of restrictions on daily life, actives of daily living and physical functioning. In addition, they encountered emotional impacts with a plethora of negative feelings and social impacts, such as difficulties socialising and maintaining relationships. Patients coped by adapting their life around SBS‐IF, having support and adopting an attitude of gratitude and acceptance. Family members were also affected and, along with patients, appreciated the respite of a night off from infusions. Conclusions Patients and families face many difficulties with SBS‐IF. Healthcare professionals can support patients by facilitating them explore what others have found beneficial; adapting their life around PN, viewing PN with acceptance and trying to cultivate gratitude. Further research into the support required for families may be beneficial.

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“…HPN is experienced in the context of living with other symptoms of illness, which may be burdensome [8,26,28]. Other recurring themes are restrictions imposed from being connected to the HPN and the lack of autonomous control over their body [8,26,29].…”

Section: Discussionmentioning

confidence: 99%

Palliative home parenteral nutrition in patients with ovarian cancer and malignant bowel obstruction: experiences of women and family caregivers.

Sowerbutts

Lal

Sremanak

et al. 2019

Preprint

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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.

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Patients' experiences with home parenteral nutrition: A grounded theory study

Cited by 11 publications

References 21 publications

Meaning of Receiving Artificial Nutritional Support in People in the Postoperative Period of Abdominal Surgery

Meaning of Receiving Artificial Nutritional Support in People in the Postoperative Period of Abdominal Surgery

Short bowel syndrome and the impact on patients and their families: a qualitative study

Palliative home parenteral nutrition in patients with ovarian cancer and malignant bowel obstruction: experiences of women and family caregivers.

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