An exploration of the impact of home enteral tube feeding on the eating habits of the partners of adults receiving home enteral tube feeding
Authors: Morton K.H. , Goodacre L. 
Published: July 2008

Background:  Home enteral tube feeding (HETF) is becoming increasingly more common (Jones et al., 2006) with implications for primary care practice. Carers play a vital role in the management of people with feeding tubes and as a consequence need to address, not only the practical aspects of managing the system but wider implications in terms of the impact on their own eating habits. Current literature fails to reveal any evidence on how such carers manage their own food intake, identifying a gap in current knowledge. The aim of my research was to explore the impact of HETF on the eating habits of the partners of adult patients receiving HETF.

Methods:  A qualitative approach using symbolic interactionism was used to explore the impact of HETF on carers of people who are nil by mouth and the effects on their eating patterns. Purposive sampling ensured that the participants met the inclusion criteria by including carers of: nil by mouth people living in their own home; with a diagnosis of head & neck cancer or a neurological condition; who were at different stages in relation to the duration of receiving total HETF. Single semi‐structured interviews were conducted with carers in their own home to explore changes in eating habits; how tube feeding affected social aspects of eating; coping strategies and support services accessed. Data were analysed thematically. A coding framework was developed using key words from transcripts. Codes were constantly reviewed to reflect understanding and interpretation of data. Interconnecting codes were grouped, re‐coded and displayed as themes. Ethical approval was obtained from appropriate committees.

Results:  Ten people were identified as meeting the inclusion criteria of whom five consented to participate. Three key themes were identified: you have to eat to live, communal eating and managing change. Findings showed carers experienced overwhelming emotional responses as they adjusted to their new way of life, especially feelings of guilt when eating and drinking ‘You couldn't you know you felt really guilty eating. You really did feel guilty eating’. HETF impacted on carers in different ways necessitating the use of several coping strategies of which, time, effective communication, developing a routine and enlisting support were key. Managing the enteral feeding system became another way of life, however, a need for initial intensive support, followed by continual practical, emotional support were identified. All carers reported some change in eating habits, short or long term, for example, change in meal times, reliance on quicker easier snack meals, missing meals, not eating in front of their partner and some experienced a role reversal regarding cooking, ‘…that was X's job X was a chef you see so…I cooked odd things but X mainly did all the cooking cos again I worked strange hours before I went on nights…’.

Discussion:  The study explored a neglected area in the field of HETF highlighting the profound impact HETF has on carers eating habits and psychosocial well‐being. It is evident that over time carers accept that they have to eat and adjust to their new way of life. However, these data suggest that additional practical and emotional support in the early stages of HETF may be beneficial in improving this process.

Conclusion:  Carers’ well‐being should become an inclusive part of healthcare professionals initial and routine follow up with patients receiving HETF.

Reference  Jones, B., Holden, C., Dalzell, M., Micklewright, A. & Glencorse, C. eds (2006) Artificial Nutrition Support in the UK 2005.A report by the British Artificial Nutrition Survey (BANS) [Online]. London: A committee of the British Association for Parenteral and Enteral Nutrition. Available at http://www.bapen.org.uk (accessed on 12 February 2007).