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

Parenteral nutrition (PN) provides nourishment and hydration as an intravenous infusion to patients with intestinal failure (IF). The aim of the study is to generate theory that explains the experiences of adult patients living with home parenteral nutrition (HPN) and complex medication regimens. A grounded theory methodology was used to explore the experiences of twelve patients receiving HPN. A semi-structured interview was conducted and recorded in each participant's home setting. Each interview was transcribed verbatim. The simultaneous process of data collection and analysis was followed reflecting the principles of the constant comparative approach. A total of 15 patients gave written consent, with 12 of them agreeing to be interviewed. All the participants had previously undergone surgery as a result of chronic ill health or sudden illness. Analysis revealed two core categories: stoma and HPN, and these were supported by the subcategories: maintaining stoma output, access to toilets, managing dietary changes, maintaining the HPN infusion routine, access to technical help to set up an HPN infusion, mobility with HPN equipment and general health changes. The strategy of living with loss was demonstrated by all the participants, and this was supported by the action strategies of maintaining daily activities and social interactions. This study generates new understanding and insight into the views and experiences of patients receiving HPN in the UK. The findings from these participants have been shown to resonate with the Kubler-Ross Model [1] of the five stages of grief. The theory of living with loss was generated by the use of a grounded theory methodology. This small scale exploratory study reveals opportunities for improvements in practice to be considered by the nutrition support team (NST) and other healthcare professionals involved in the patient's hospital stay prior to discharge on HPN.

Wong C ，Lucas B ，Wood D 《Clinical Nutrition ESPEN》

Identifying patient-centered quality indicators for the care of adult home parenteral nutrition (HPN) patients.

Previous qualitative research, aimed at eliciting the experiences and views of home parenteral nutrition (HPN) patients in daily life, revealed little information on HPN care. However, to perform patient-centered care, it is important to understand what "quality of care" means for adult HPN patients. Therefore, the aim of this study was to identify quality indicators through patients' perspectives. In-depth, face-to-face, semistructured interviews were conducted between June and November 2011 with adult patients who recently started HPN. Patients were selected by purposive sampling. Interviews were audio recorded, transcribed verbatim, and analyzed using a framework approach. Nvivo 9.0 software was used for managing transcripts. Twelve adult patients (7F/5M) were interviewed. At the time of the interview, median HPN experience was 59 days. Two structure, 31 process, and 9 outcome indicators were identified. The majority of process indicators are related to the home nurse, indicating the important role of these healthcare professionals in HPN care. In addition, all interviewees reported communication as an essential aspect of the complex care pathway. The identified outcome indicators are comparable with the indicators that were previously developed by an expert panel. For example, improvement in quality of life during HPN treatment and incidence of catheter-related infections were identified by both groups. Interviews with HPN patients revealed an interesting set of indicators that can be used to perform, evaluate, or improve current HPN care and are a starting point for a more patient-centered approach.

Dreesen M ，Foulon V ，Vanhaecht K ，De Pourcq L ，Hiele M ，Willems L ... -  《-》

The active problem solving of patients dependent on home parenteral nutrition: A qualitative analysis.

People with chronic, type 3, intestinal failure often require long-term home parenteral nutrition (HPN). People receiving HPN have frequent interactions with their healthcare, due to the need for close monitoring and due to recurrent hospital admissions. Individuals' responses to, and interactions with, their health care service provides are poorly described. We conducted a service evaluation to explore people's experiences of HPN-related healthcare interactions in order to identify how service providers can best meet the individualised needs of patients. We interviewed ten people receiving HPN. The participants were asked about their healthcare interactions related to HPN. The data were analysed using a qualitative research method known as interpretive phenomenological analysis. This analytical approach is concerned with the meaning that people ascribe to particular events, in this case their HPN-related healthcare interactions. The participants in this study described a range of psychosocial problems related to their HPN healthcare interactions, including reliance, risk and restrictions. Participants' solutions to these problems included adaptation of their routine, self-guardianship and passivity. Sometimes, these solutions generated secondary problems of their own, including concerns with resource use, negative healthcare interactions and conflicts of responsibility. A range of contextual factors influenced how participants interpreted their healthcare interactions and the solutions available to them. These contextual factors included continuity of healthcare professionals, the attitude of staff, and information and knowledge about HPN. By attending to the individual meaning ascribed to healthcare events, and the contextual factors that surround these events, we have been able to better understand the decisions made by patients dependent on HPN. This suggests that healthcare professionals may also better understand their patients' decision making by attending to the individual meaning that patients ascribe to healthcare events and to contextual factors. We propose a model to describe the process of problem -> resolution -> problem in which participants are actively engaged.

Ennis L ，Ablett J ，Taylor M ，Lal S ... -  《Clinical Nutrition ESPEN》

How good is quality-of-life for children receiving home parenteral nutrition? - A pilot study.

Children on home parenteral nutrition and their parents not only engage with complex nutritional issues but also have to manage difficult social and financial problems with social and clinical support that may not always meet their needs. Baxter's HPN-QOL questionnaire, assesses the QOL of adult patients treated with HPN, and has been developed rigorously using standard guidelines, measuring various dimensions of QOL. Our aim was to use this tool to explore how HPN influences the QOL of paediatric patients. The HPN-QOL questionnaire was modified to suit a paediatric HPN population. Data on demographics, aetiology of intestinal failure and duration of HPN were collected from a departmental database. Quality-of-Life grading of functional and symptom scales, HPN specific items and overall QOL Numerical Rating Scales were determined. Fourteen out of 17 families returned the completed questionnaires. QOL was significantly impaired by increased dependency regarding items of daily living such as eating, dressing, washing, and mobility, but was not affected in the domains of school attendance, general fatigue, pain and body image. There were no significant differences in QOL when patients with and without enterostomy were compared. Patients felt well supported by the hospital nutrition team in managing logistics related to HPN. QOL in HPN patients was not significantly affected by the medical aspects of care. This descriptive study highlights the need for further integration of medical and social care in order to support families of children receiving HPN as QOL was impaired in relation to activities of daily living and social functioning.

Tran LC ，Lazonby G ，Morello R ，Pham D ，Ellis D ，Goldthorpe J ，Iglesias N ，Steele J ，Zamvar V ，Puntis JWL ，Vora R ... -  《Clinical Nutrition ESPEN》

Home parenteral nutrition: a qualitative interview study of the experiences of advanced cancer patients and their families.

Orrevall Y ，Tishelman C ，Permert J 《CLINICAL NUTRITION》