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》

The impact of Home Parenteral Nutrition on the lives of adults with Type 3 Intestinal Failure.

Several studies have been published reporting on the impact of Home Parenteral Nutrition (HPN) on the lives of people with Type 3 Intestinal Failure. These studies focused on symptoms and functional limitations resulting from the treatment. The aim of this study was to determine how dependence on HPN affects individuals' ability to fulfil their human needs. Unstructured qualitative interviews were conducted with people dependent on HPN, who were asked to explain how their lives were affected by the treatment. Theoretical thematic analysis was conducted on the interview transcripts to identify statements describing aspects of human needs that were left unfulfilled. Care was taken to separate the impact of HPN from that of the underlying disease. Interviews were conducted with 30 patients (53% female; mean age, 55.9 (range 35-76) years). Most of the sample (87%) had short bowel syndrome. Major aspects of need affected by HPN were related to: autonomy, cognition, relationships, role fulfilment, socialisation, appearance and self-esteem, appetite and perceived vulnerability. The study illustrates how patients' lives are affected by HPN. Statements generated from this qualitative study were used to produce the Parenteral Nutrition Impact Questionnaire (PNIQ), a patient-centric measure of quality of life specific to people using HPN.

Heaney A ，McKenna SP ，Wilburn J ，Rouse M ，Taylor M ，Burden S ，Lal S ... -  《Clinical Nutrition ESPEN》

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》

Illness beliefs of patients on home parenteral nutrition (HPN) and their relation to emotional distress.

Fortune DG ，Varden J ，Parker S ，Harper L ，Richards HL ，Shaffer JL ... -  《CLINICAL NUTRITION》

Clinical, social and rehabilitation status of long-term home parenteral nutrition patients: results of a European multicentre survey.

Home parenteral nutrition (HPN) is a lifesaving treatment in patients with intestinal failure. Dependency of nutritional support becomes permanent for the majority of patients who had received HPN for at least 2 years. The alternative to long term HPN in selected patients is intestinal transplantation. To study some of the clinical, social and rehabilitation aspects of long-term HPN treatment. A survey was performed in nine European HPN centres. The questionnaire covered epidemiologic data, underlying diseases, intestinal anatomy, nutritional support and status, marital status, rehospitalization rate, HPN complications, rehabilitation score, drugs use, coexistent diseases and interest in intestinal transplantation. For some items, data were collected within 12 months prior to the evaluation. This survey included 228 patients with a median age of 49 years. The median duration of HPN was 7 years (range 2--24 years). Short bowel length less than 100 cm was reported in 65% of patients with a predominance of end-jejunostomy or jejuno-colonic anastomosis. Global subjective nutritional status was normal in 79% of the patients, who were supplied with a mean number of 5.6 bags of parenteral nutrition weekly. Rehospitalizations within the 12 months prior to evaluation accounted for a mean period of 23 days and were due to HPN complications in half of the cases. Catheter-related sepsis was the most frequent HPN-complication. Bone metabolism disorders, which seemed to be more common than liver diseases, were directly related to HPN duration. One-third of the HPN patients was regularly consuming analgesics or opiates. HPN impair complete rehabilitation status but may improve the status of patients who had a very low rehabilitation score before starting HPN. An interest of intestinal transplantation was noted in only 10% of medical teams and in 8% of HPN patients. This study is the largest European survey on long-term HPN patients with long standing or permanent intestinal failure. Data enlighten clinical, social and rehabilitation aspects of patients who could face the option of intestinal transplantation in the future.

Van Gossum A ，Vahedi K ，Abdel-Malik ，Staun M ，Pertkiewicz M ，Shaffer J ，Hebuterne X ，Beau P ，Guedon C ，Schmit A ，Tjellesen L ，Messing B ，Forbes A ，ESPEN-HAN Working Group ... -  《CLINICAL NUTRITION》