The impact of living with home enteral feeding: perspectives of people who have had a diagnosis of head and neck cancer

Abstract

Background The number of people with head and neck cancer who are home enterally fed continues to grow each year. Insertion of a feeding tube is common place in these patients and is considered to have a detrimental effect on quality of life. The present study aimed to investigate the daily impact of home enteral feeding (HEF) from the perspective of people who have had a diagnosis of head and neck cancer. Methods The methodology aligned with interpretative phenomenology analysis. People who were home enterally fed, with head and neck cancer, and aged ≥18 years were recruited. Data were collected using semi‐structured interviews and analysis focused on what the daily impact of HEF meant for participants. Results Data saturation was achieved after interviewing 15 participants. Five cluster themes were identified. ‘Deviation from the norm’ encompassed change and loss of normality. ‘Regaining control leading to empowerment’ encompassed participant empowerment through development of new skills and adjusting the feeding regime. ‘Creating a new normal’ involved making adjustments to facilitate inclusion and participation. ‘External modifiers of the HEF experience’ and ‘internal modifiers of the HEF experience’ encompassed the identification of external and internal HEF factors that influenced HEF adaptation. Conclusions HEF was found to influence peoples’ daily lives substantially and required extensive adjustments for individuals to find a new normal. A greater level of interpretation was provided beyond the current evidence‐base for this group. Policymakers and clinicians should recognise the wider impact of HEF and ensure that this awareness is embedded in clinical practice.

Dealing with loss: food and eating in women with ovarian cancer on parenteral nutrition

“…Like the participants in our study, the patients with a PEG experienced being unable to eat a social loss as they were could not participate in social situations that involved eating, particularly around special occasions. Walker et al concurs with our findings and other research that patients not being able to eat had an impact on family members who avoided eating in front of them (22,23) . Food and mealtimes, rather than acting as a social glue in relationships, became a point of separation and isolation as family members ate in different rooms.…”

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

“…The results of the present study also highlight the expectations of caregivers in relation to urgent and routine continuity service support for the health system. The importance of support has been identified previously 33 . Insecurity and a lack of emotional, practical, and information‐related support have also been found to increase the vulnerability of caregivers, as well as their sense of loneliness 23 .…”

“…The acceptance and normalisation of caregivers’ new role, as found in previous research, 32 is related to readjustment in their lives in search of new stability, and parallels can be drawn with patients receiving HETF. 11 , 33 This may involve regaining control over their daily lives. 33 Understanding the effectiveness of nutrition and its role in disease contributed to caregivers participating in decision‐making.…”

“… 11 , 33 This may involve regaining control over their daily lives. 33 Understanding the effectiveness of nutrition and its role in disease contributed to caregivers participating in decision‐making. 34 Information‐giving needs to include the associated evidence to ensure that a decision is made in line with their own values, 35 which facilitates decision‐making involving caregiver input.…”

“…The importance of support has been identified previously. 33 Insecurity and a lack of emotional, practical, and information‐related support have also been found to increase the vulnerability of caregivers, as well as their sense of loneliness. 23 It is noteworthy that caregivers’ ability to handle their situation was also strongly related to the amount and quality of information and support received.…”