Original articleThe path from oral nutrition to home parenteral nutrition: a qualitative interview study of the experiences of advanced cancer patients and their families
Introduction
Many patients with advanced cancer live for an extended time with the support of palliative oncological and medical treatment. Because there is a high frequency of malnutrition in this group of patients,1., 2., 3., 4. it is likely that these individuals and their families would experience nutrition-related problems. Mealtimes are an important part of daily life since food is more than just a source of nutrition. It is an integral part of social, religious, and economic aspects of life and is one way of creating and expressing relationships between people.5., 6. Changes in nutrition-related areas, such as the ability to eat and enjoy food, the times and settings of meals, and interactions with other people during mealtimes, may have important effects on patients’ lives. Despite these subjective aspects, evaluations of the interventions used to optimize nutritional intake in cancer patients have generally used objective end points (weight, survival, treatment outcome, etc.) and have not investigated the patients’ and families’ perspectives on nutritional problems and nutritional support.
According to the World Health Organization,7 the goals of palliative care include improving the quality of life of patients and their family members, providing relief from distressing symptoms, helping patients to live as actively as possible and integrating the psychological and spiritual aspects of patient care. If hospital staff members, palliative care teams, and other health professionals are to provide nutritional support (oral, enteral or parenteral) in a way that will help reach these goals, it is necessary to know how nutritional issues affect patients with advanced cancer and their families. A few studies have investigated cancer-related nutritional problems from the perspective of patients in the final stage of the disease and their family members.6., 8., 9. However, the nutritionally related experiences of cancer patients and their relatives during earlier stages of palliative care have not been investigated in depth either in institutions or at home. The importance of the home-care setting is increasing in Sweden and many other highly developed countries as hospital stays become shorter.10., 11.
The majority of patients with advanced cancer rely on oral nutrition alone, but the use of home parenteral nutrition (HPN) in these patients is increasing in many parts of Europe and the United States.12., 13., 14. No studies have been conducted concerning the circumstances leading to the acceptance of HPN, which is a time-consuming, expensive treatment that can involve severe complications and requires regular contact with nursing staff. The aim of the present study was, therefore, to investigate the nutritional situation prior to the introduction of HPN from the perspective of patients with advanced cancer and their family members in order to understand the factors contributing to their decision to accept HPN.
Section snippets
Interviews
Because of the lack of prior studies about the experience of nutritional problems during palliative care, qualitative methods were used to obtain in-depth descriptive data about this subject. Approval was obtained from the Research Ethics Committee at Huddinge University Hospital, Stockholm, Sweden, prior to the initiation of the study. Data were collected through qualitative semi-structured interviews15 that were audio-recorded and transcribed verbatim. Thirteen patients and 11 of their family
Results
Eight women and five men between 47 and 79 years old (median 65 years) with a wide range of cancer diagnoses participated in the study. Table 1 shows the patient characteristics. Four of the patients who had a BMI between 20 and 26, which is considered to be normal, reported having experienced a 20–25% weight loss from their previous body weight. At the time of the interviews, six patients were receiving chemotherapy.
Eleven family members (five wives, four husbands and two daughters) were
Discussion
This qualitative study investigated factors leading to the introduction of HPN from the perspective of patients with advanced cancer and their family members. In summary, analysis of the conducted interviews indicated that patients and family members described the nutritional situation prior to HPN as a source of great worry and often desperation. Patients reported wanting and trying to eat, but being unable to do so. Family members experienced powerlessness and frustration, as they could not
Acknowledgements
This study was supported by grants from the Swedish Cancer Society (#311803) and Fresenius Kabi AB Sweden.
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