The experience of family caregivers of patients receiving home nasogastric tube feeding in China: A descriptive qualitative study

Abstract

Background The value of caregivers with respect to ensuring safety during home nasogastric tube (NGT) feeding is increasingly acknowledged. However, little attention has been given to the experience of caregivers. Methods A qualitative descriptive design using semi‐structured interviews via purposive sampling at a comprehensive hospital in China was employed. Family caregivers of patients with home NGT feeding were recruited. Interviews were recorded, transcribed verbatim and analysed qualitatively using inductive content analysis. Results Thirteen family caregivers of patients with home NGT feeding were interviewed. Four main themes were generated: negative experience (uncertainty and ambivalence, transition gaps between hospitals and home care services), new role: adapting to the lifestyle (participating in decision‐making, being responsible for everything, adjusting own life to NGT feeding), perceived benefit of caregiving (personal growth, development of positive attitudes and achievements) and expectations (expectations from continuity health system services, expectations from social support). Conclusions The present study highlights the vulnerability and perceived benefits embedded in the role of a family caregiver. Improving communication and standardising practices between home and hospitals should be considered.

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).…”

“…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).…”

“…Finding a new purpose in life, sense of pride and achievement extending beyond care‐related activities was reported: ‘ You really have a sense of accomplishment when you seethat everything is going well. My relatives and neighbours respect me, and they think what I am doing is great ’ (Xue et al., 2021).…”

“…FCs highly valued professional training and advice (Smith et al., 1991) but the professionals should be able to provide both clinical and psychological support: ‘ The sole psychological support of people, without clinical competencies, wouldn't be of use ’ (Jukic et al., 2017). Some FCs perceived lack of sufficient professional support (Bjuresäter et al., 2012; Green et al., 2019a, 2019b; Xue et al., 2021), while others were satisfied with the training and support received (Ang et al., 2019; Halliday et al., 2017; Rickman, 1998). Home visits from professionals provided a sense of security (Orrevall et al., 2005), but also felt like ‘ an examination that I have to pass each month ’ (Jukic et al., 2017).…”

Exploring complexities in nutritional support across the continuum of care

“…These themes were reiterated in a Chinese study exploring caregivers' experiences with home nasogastric feeding. 12 The clinical decision-making processes employed by dietitians to navigate the complexity of nutritional support in different settings is explored in the power and autonomy of relationships in interdisciplinary work. This confirms that active engagement in the communication process and negotiation are essential skills within a dietitian's tool kit with respect to being an effective patient advocate.…”