Caregivers’ Perspectives on the Slight Recovery of Oral Intake of Home‐Dwelling Patients Living With a Percutaneous Endoscopic Gastrostomy Tube: A Qualitative Study Using Focus Group Interviews

Abstract

Background Swallowing rehabilitation for patients living with a percutaneous endoscopic gastrostomy (PEG) tube for home enteral nutrition (HEN) is poorly documented, and the quality of caregivers’ daily lives is also unknown. Methods A qualitative study based on constant comparative analysis was conducted. The study subjects were the caregivers of acquired brain injury survivors residing at home and living with a PEG tube for HEN who had recovered slight oral intake because of swallowing rehabilitation. Interviews were transcribed into anonymous transcripts and analyzed using inductive qualitative analysis. After 2 researchers performed the initial analysis, related concepts were extracted using matrix‐based methods. Finally, an audit was conducted to verify the consistency between the data and extracted concepts. Results Of the 22 caregivers (17 stroke cases and 5 traumatic brain injury cases), 21 were female and 1 was male. The psychological impact on caregivers’ daily lives because of the patients’ slight recovery of oral intake consisted of 4 concepts: (1) reconstructing and/or strengthening a sense of family belonging, (2) combining oral intake and other rehabilitation, (3) reducing the burden of providing care, and (4) relieving social isolation. Additionally, the evaluation of swallowing function using video endoscopy at every visit led to compliance with eating safety to fit patients’ swallowing ability. Conclusions Slight recovery of patients’ oral intake changed the daily lives of emotionally overwhelmed caregivers. The evaluation of swallowing disabilities using video endoscopy for patients with a PEG tube for HEN may reveal recovery of eating function and increase compliance with eating safety.

Experiences and needs of home caregivers for enteral nutrition: A systematic review of qualitative research

“…Caregivers believe that follow‐up care at home can not only allow patients to return to their former life habits but also facilitate feeling cared for by family members and enhance a patient's confidence in recovery (Gramlich et al, 2018). In addition, home caregivers play an important role in enteral nutrition from the onset of illness to care at home, taking on the daily duty of enteral nutrition, including feeding, ostomy and piping care, the management of related complications, and the provision of emotional support (Mori et al, 2019; Penner et al, 2012).…”

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

“…Gender was reported in 16 studies, and the majority were female (75%). There was no reference to socio‐economic status in any of the studies, and only five reported data on participants’ employment (Mayre‐Chilton et al., 2011; Mori et al., 2019; Sezer et al., 2020; Smith et al., 1991; Sowerbutts et al., 2020). Ethnicity was reported in seven studies only (Ang et al., 2019; Asiedu et al., 2018; Cohen et al., 2012; Halliday et al., 2017; Jukic et al., 2017; Kurien et al., 2017; Sowerbutts et al., 2020), and the majority were white.…”

“…These data were not reported for six studies (Ang et al., 2019; Fuhr & Ciachi, 2019; Jukic et al., 2017; Rickman, 1998; Stavroulakis et al., 2016) or could not be extracted (Sowerbutts 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).…”

“…For some, it brought a change of relationships, responsibilities and roles within families (Baijens et al., 2020; Penner et al., 2012; Smith et al., 1993; Xue et al., 2021). Psychological burden of AN&H was frequently reported, with FCs feeling lonely and socially isolated (Bjuresäter et al., 2012; Green et al., 2019b; Jukic et al., 2017; Mori et al., 2019; Penner et al., 2012; Sezer et al., 2020; Smith et al., 1991; Xue et al., 2021), anxious (Ang et al., 2019; Fuhr & Ciachi, 2019; Green et al., 2019b; Kurien et al., 2017; Penner et al., 2012; Smith et al., 1991) and depressed (Bjuresäter et al., 2012; Smith et al., 1991). FCs’ sleep was affected (Green et al., 2019b; Halliday et al., 2017; Penner et al., 2012), for example, due to altered sleep position or noises from the feeding pump (Halliday et al., 2017).…”

“…FCs experienced loneliness and loss of togetherness during meals, which was difficult for them (Green et al., 2019b; Mori et al., 2019; Stavroulakis et al., 2016). Mealtimes were now stressful for FCs, who often felt guilty (Bjuresäter et al., 2012; Penner et al., 2012): ‘ It was painful that only I ate but you could not eat at all ’ (Mori et al., 2019). Some FC avoided eating in front of the person with AN&H or chose to cook bland food without any strong aroma (Penner et al., 2012).…”