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

Abstract

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.

Prospective evaluation of the family's health‐related quality of life in pediatric intestinal failure

“…The fact that weaning off PN was associated with improved HRQOL for the families in our secondary analysis further validates the adverse effect that long‐term PN may have on family quality of life. Other recent studies have identified a negative effect of home PN on the HRQOL of the patient and household 20–22 . To our knowledge, this is the first study to use the PedsQL FIM methodology to assess the effects of long‐term home PN on family HRQOL.…”

A qualitative systematic review of family caregivers’ experiences of artificial nutrition and hydration at home: A meta‐ethnography

“…The majority (19/22) of studies employed a qualitative design (Ang et al., 2019; Asiedu et al., 2018; Bjuresäter et al., 2012; Brotherton et al., 2006; Cohen et al., 2012; Green et al., 2019a, 2019b; Halliday et al., 2017; Jukic et al., 2017; Mayre‐Chilton et al., 2011; Mori et al., 2019; Orrevall et al., 2005; Penner et al., 2012; Rickman, 1998; Sezer et al., 2020; Smith et al., 1993; Sowerbutts et al., 2020; Stavroulakis et al., 2016; Xue et al., 2021) and three were mixed methods (Fuhr & Ciachi, 2019; Kurien et al., 2017; Rickman, 1998). Data were collected predominantly through interviews (19/22) (Ang et al., 2019; Asiedu et al., 2018; Bjuresäter et al., 2012; Brotherton et al., 2006; Cohen et al., 2012; Fuhr & Ciachi, 2019; Green et al., 2019a, 2019b; Halliday et al., 2017; Kurien et al., 2017; Orrevall et al., 2005; Penner et al., 2012; Rickman, 1998; Sezer et al., 2020; Smith et al., 1991; 1993; Sowerbutts et al., 2020; Stavroulakis et al., 2016; Xue et al., 2021) and focus groups (3/22) (Jukic et al., 2017; Mayre‐Chilton et al., 2011; Mori et al., 2019). One study used a photo‐elicitation interviewing method (Asiedu et al., 2018), and one supplemented interviews with observations of Percutaneous Endoscopic Gastrostomy (PEG) feeding practices (Sezer et al., 2020).…”

“…Where reported, cancer (Ang et al., 2019; Asiedu et al., 2018; Bjuresäter et al., 2012; Brotherton et al., 2006; Cohen et al., 2012; Halliday et al., 2017; Kurien et al., 2017; Mayre‐Chilton et al., 2011; Orrevall et al., 2005; Penner et al., 2012; Rickman, 1998; Sezer et al., 2020; Smith et al., 1991, 1993) and neurological conditions (Ang et al., 2019; Asiedu et al., 2018; Bjuresäter et al., 2012; Brotherton et al., 2006; Jukic et al., 2017; Mori et al., 2019; Rickman, 1998; Sezer et al., 2020; Stavroulakis et al., 2016) were the most prominent diagnosis for the care recipients. One study reported the experiences of patients with short bowel syndrome intestinal failure (SBS‐IF) and their FC (Sowerbutts et al., 2020). A variety of AN&H types were used (see Table 3 for further characteristic of individual studies).…”

“…‘ I can be strong but, you know, it's hard to be strong… ’ (Penner et al., 2012). AN&H restricted freedom (Bjuresäter et al., 2012; Green et al., 2019a, 2019b; Sowerbutts et al., 2020): ‘ Living with that it's like having a ball and chain right. It ruins your life ’ (Green et al., 2019a).…”

Glucagon-like peptide 2 analogues in the treatment of intestinal failure: A qualitative exploration of the views of patients and their families in decision making

“…This can be contrasted with decision making for PN. Patients discussing their experience of PN, refer to the treatment as life saving [9,34,35]. However, they do not discuss deliberating about the decision to start PN, probably because it was driven by clinical need.…”