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.