Altered eating: a definition and framework for assessment and intervention

Abstract

Background: Eating can be a significant challenge for cancer survivors; however, to date there is no systematic way of assessing and addressing food related quality of life in this group. The purpose of our study was to develop a framework for doing so. Methods: Over the course of 6 years in participant-led food workshops, we worked alongside 25 head and neck cancer (HNC) survivors and their partners, employing video-reflexive ethnographic (VRE) methods. The current study reports on data from the two summative workshops of this series where we worked with participants to cohere the emergent themes. Video and transcripts were reviewed and coded with participants and stakeholders according to domains of life that were affected by food. Three of the authors, one of whom is both survivor and researcher, arrived at the consensus framework. Results: Seven areas of life were identified as affecting, or being affected by, altered eating. Three were physiological: anatomical, functional and sensory. Two captured the cognitive and behavioural labour of eating. Social life and identity were altered. The foregoing had an enduring emotional impact. Conclusions: Altered eating has physical, emotional and social consequences. The altered eating framework provides a systematic way of exploring those consequences with individual survivors. This framework has the potential to improve both the assessment and treatment of altered eating, to benefit food-related quality of life.

Food play: A novel research methodology for visceral geographers and health researchers

“…When we started the research, survivors had told us that food had become and isolated and isolating experience. Not only did they find eating socially embarrassing because of physical responses, including the risk of choking, but because 'enforced mindful eating' -having to co-ordinate the act of swallowing and breathing -required almost complete attention on the act of eating (Burges Watson et al, 2018). At the Christmas feast however, that same visceral experience that we witnessed in John's face with the cheese foam was multiplied for all in attendance.…”

“…Head and neck cancer survivors may live many years beyond treatment with chemoradiotherapy, but for some, on-going difficulties with food and eating may persist and become an enduring feature of their lives (Ganzer et al, 2015;Burges Watson et al, 2018). Over six years we have engaged research with 25 survivors of head and neck cancer, with the aim of developing a framework to systematically and comprehensively capture the impact an altered relationship with food had on their lives (Burges Watson et al, 2018). The project was underscored by a commitment to patient and public involvement in research in which participants were equal partners in establishing the research questions, designing the research, and disseminating the findings (Palm et al, 2013;Burges Watson and Lewis, 2011).…”

“…Like Gen, many of the participants evolved new ways of coping with altered eating. Vera and Elly had found what we have termed compensatory strategies (Burges Watson et al, 2018). Prior to the cancer, Vera had loved dining out.…”

“…For our purposes (and not to limit other ways of 'doing' food play or visceral research) we define 'food play' as the hands-on experience of food preparation, sharing and 'tasting opportunities' (where tasting is not essential to involvement) in a commensal setting where the research focus is co-produced with participants. We draw on our experience of undertaking food play workshops within a research project investigating the significance of the loss of pleasure and burden of eating for survivors of head and neck cancer (Burges Watson et al, 2018). We came to understand food play, in the right setting, enhanced participation, and was a means to explore how different bodies experienced food, pleasure and burden.…”

Visceral geographic insight through a ‘source to senses’ approach to food flavour

“…The relationship between smell function and depression is thought to work in two ways, through reduced attention to smell in depressed subjects, and due to reduced olfactory function leading to depression (Croy and Hummel, 2017). For people with 'altered eating' difficulties resulting from diminished multi-modal sensory experience, the impact can be socially isolating and involve an almost unbearable loss of pleasure and interest in food and eating (Burges Watson et al, 2018). The loss of pleasure in food may also be a temporary experience in those with normal function, for example, in the use of various drugs (Wang et al, 2017), or when a common cold all but obliterates the full experience of 'flavour'.…”