Introduction and Background
In-patient and daycare facilities for eating disorder treatment usually aim to reinstate regular eating safely, achieve recovery of healthy nutritional status, and progress towards normal social eating behaviour. Food provided in these settings is planned to support this. People who have features of autistic spectrum disorder in addition to an eating disorder may face severe challenges with using ordinary hospital food provision to work towards these aims.
Features of ASD that are associated with food and meal times can result in multiple food aversions, affect appetite and physical ability to eat, making eating difficult and distressing, and raising anxiety. Anxiety commonly causes loss of appetite for food, even nausea or vomiting, creating a vicious cycle of distress and food refusal. Features that can drive this include:
These challenges with eating increase the risk of an eating disorder developing, and if it does, anxiety associated with eating is further escalated by the eating disorder psychopathology, especially fear of weight gain.
Many people with ASD habitually eat only a limited variety of foods, so may have food provided from home while they are in hospital. This is very difficult to manage in an eating disorder treatment setting. Managing food and eating requires a high level of skill and effort from the specialist eating disorders team. Individual diet plans must meet patients’ needs for safe refeeding, correction of nutritional deficiencies, and restoration of healthy body weight, so food provision is carefully controlled. In this situation, providing separate and different food for individual patients is disruptive to the routine, demanding for staff, and interferes with the aim of creating a supportive peer group. For people without autistic features, supported experience and practice with eating ordinary food in a social setting aims to help reduce anxiety. Those with autism become more anxious when faced with such expectations, so retreat further into established eating routines that feel safe, finding it increasingly difficult to make changes.
As part of the PEACE project, the team sought to make some food provision that would be more acceptable for people struggling with these barriers to eating. The menu was planned for use on the in-patient ward, and in two daycare settings, one working with patients seeking to progress towards full recovery (Daycare), the other supporting patients to improve quality of life and reduce hospital admission while continuing to live with an eating disorder (Step-Up).
Development of the PEACE Menu
The standard re-feeding process begins with a process of gradually increasing, controlled food intake to re-introduce adequate eating, stabilise medical condition and minimize risk. The next step is a staged move to a menu of regular meals with socially normal portion sizes and food variety, with daily changes over a 4-week cycle. Weight increase is achieved by providing 3 courses at each meal, and snacks between meals.
To make the food provision more manageable for those with ASD-related difficulties, it was agreed to provide a menu to offer a small number of alternative meals, to be available every day. It was agreed that the menu would:
After discussion with team members and patients, a draft menu of simple meals was produced, to be available every day, offering a small number of alternative options to the meals on the main menu. A meal, or a single course, from this alternative menu could be provided by the nursing staff to patients finding themselves unable to eat the meal selected, or used more regularly, following a care plan agreed with a dietitian. At the most extreme, this would allow a patient to eat the same meals every day.
The first draft was developed and agreed by the eating disorders team dietitians. It was then sent to the catering company dietitian to address some practical issues:
Additionally, there was one dish, already in use on the standard menu, that needed some further development to meet the PEACE menu requirements.
As the catering company was undergoing a staff re-structure, unfortunately it took several months to produce the necessary information and dish development. The menu was implemented 12 months after the first draft was sent to the catering company.
It was additionally agreed that the catering company would provide photographs of the meals as served, and some items shown in the packaging, to help make the food familiar and predictable for patients, and to help staff serve the meals consistently. First drafts of these photographs were supplied several months after the menu was first implemented. The idea of photographs was very much welcomed by service users and staff. They appreciated them as a guide to serving sizes, appearance and presentation on the plate, and an indication of the nature of the food.
Implementation of the PEACE Menu
The catering company was slow to respond to the request for developing and implementing the PEACE menu. Any large hospital catering service faces stresses which make such innovative developments difficult, as they work with extremely limited budget, staff and facilities. The service is structured to provide large numbers of meals, and it is difficult to make separate provision for small numbers. Re-organisation of hospital catering services inevitably happens whenever the contract changes hands, and at times during the life of the contract. A re-organisation coincided with the development of the PEACE menu, and staff changes impeded the process which might otherwise have been much quicker. Catering contractors regard recipes they develop as commercially sensitive information, so do not share them with clinical dietitians, who rely on the contractor’s chef and dietitian for assurance that specifications are met, and this also introduced error and delay into the process. Although the contractor had agreed to produce photographs, competing demands on staff time made this slow.
These constraints made planning of the menu, coming to final agreement, and implementing the menu slow, taking a year between being sent a first tentative draft and delivering the menu. There was further delay in providing the photographs.
The dietitian attended a community group meeting on the in-patient ward and the Step-Up daycare setting, to introduce and explain the menu, and provide copies of the menu, with guidance on use. She also ensured copies were available for patients on notice boards. Staff were provided with copies that additionally showed calorie values for each item. The dietitians conducted brief training sessions for staff, who implemented the menu smoothly at meal times. Staff involved in the PEACE project attended weekly brief meetings (“huddles”) where the dietitian addressed any difficulties with the menu. The menu was also a regular item on the ward catering meeting agenda, where staff and patients could discuss suggestions and criticisms with catering staff.
It was agreed that nursing staff would be free to make care plans with service users to choose from the menu up to three times a week, and dietitians for more frequent use. Nursing staff sometimes struggled to find time to make care plans to use it, and there would sometimes be a delay before service users could meet a dietitian for care planning. Use of the PEACE menu was reviewed by the whole team at the regular individual clinical review meetings, which service users attended.
In the in-patient and Step-Up settings, the menu was available for all patients to use, to provide an immediate alternative for any patient struggling to eat the meal they had chosen, or for more frequent use, planned with the clinical team, usually the dietitian, to meet ongoing individual needs.
On the recovery-focused Daycare unit, patients are expected to be actively engaged with recovery, and would need the alternative menu much less, so it was not routinely made available, and offered only to individuals likely to benefit, usually for a short period, to help with settling in or with particular difficulties.
In all settings, dietitians specifically included in their assessment an exploration of food aversions, sensory sensitivities and any fixed beliefs and rules about food and eating. They could then discuss and plan the possible use of the alternative menu to meet individual needs.
Several methods were used to evaluate the menu. Staff held regular, usually brief, meetings (“huddles”) to discuss issues related to the PEACE project, and were able to give feedback on the menu to the dietitians at these events. The in-patient unit had a well-established routine of regular meetings attended the ward housekeeper and dietitian, the hospital head chef and the catering company dietitian, and open to in-patients and day patients, and other members of staff. Feedback on the PEACE menu was included as a regular agenda item at these meetings. More formal evaluation was made by a brief questionnaire for service users. In Daycare, feedback was collected at 2 meetings facilitated by the dietitian. Feedback was used to make some minor changes to the menu.
Early in the implementation of the menu, not all service users were aware of it, so information was made more widely available to staff and on notice boards for service users.
Between the delayed implementation of the menu, and closure of the services because of the 2020 COVID-19 pandemic, there was only a limited period, of six months, in which to evaluate the menu.
During that time, 20 of the 30 patients (67%) admitted to the in-patients service used the PEACE menu at least once.
Feedback Questionnaires sought opinions on possible benefits of the menu. 7 questionnaires were returned by in-patients. Results are shown in Table 1.
Initial responses suggested information about the menu was not communicated effectively enough, steps were taken to improve this and later responses indicated improvement. Some suggested changes in the choices offered on the menu, and some minor changes were made in response.
Table 1 Responses to specific questions about helpful uses of the PEACE menu
(total responses = 7)
|The menu helped me to complete meals||3|
|The menu helped me to feel the food was safe||3|
|The menu helped me to stay calm in the dining room||2|
|The menu helped me to control unhealthy behaviours||2|
|The menu helped me feel more confident about eating||4|
As with any menu, the food choices did not suit everyone. Only two respondents agreed that the menu provided enough manageable options for them. Others thought there were not enough choices, and some suggested items they would prefer.
Some found the option of a familiar meal helped them to try more challenging foods, others felt it might enable them to avoid making progress with making changes with their eating.
Some service users took copies of the menu with them to use on home leave, to help them to continue to eat adequately. One reported that it helped her parents to understand her difficulties with food, and how to address them.
Free text comments were mixed. No consistent themes were identified.
“The alternative meals… are those I am likely to eat at home so helps me realise the correct portions I should have at home”
“Thankyou so much for giving me the opportunity to use the alternative menu”
The menu was helpful “especially when the options on the main menu were too challenging for me at my current point in my recovery”
“a great and safe option”
There was enough positive response to continue the use of the PEACE menu, to keep it under review, and continue to develop it.
Conclusions and Learning
Delivering the PEACE menu presented significant challenges to the hospital catering service.
These difficulties need to be anticipated in the development of any new element of hospital foodservice. Close and early collaboration with foodservice partners is essential, ideally with a nominated dietitian in the catering company as their project lead. Smaller scale operations may find it easier.
Service users wanted the photographs to be as similar as possible to the meals as they would be given, using the same table ware, and including cutlery as an indicator of scale. They also welcomed pictures of packaged foods in the wrapping, as they appreciated knowing the brand, and the reassurance that serving sizes would be consistent and controlled.
Clinical staff serving food, managing meal times, and supporting service users with choosing and eating, need to be involved in the development of the menu to ensure they find it workable. They need adequate training, and ongoing support, in order to use the menu effectively.
Service users welcomed the opportunity to share their views of the PEACE menu at the regular catering meetings.
There is a risk that some service users might become too reliant on the PEACE menu as an option that felt safe, and so fail to progress with recovery towards more normal eating. Clinical teams need to be alert to this. If the menu is used as an emergency measure to provide a replacement meal, this needs to be followed up promptly by making a care plan to consider the difficulties and plan for any future use. To meet needs found at the dietetic assessment, or difficulties that emerge in treatment, the menu should be used only with careful care planning, ideally with a dietitian, and kept under review by the MDT and the service user.
The response of service users to the menu was positive, though it was not able to completely meet all needs and preferences. Photographs are a welcome and helpful addition. The presence of the menu was a reassurance even for service users who did not use it. It was helpful in enabling service users to feel the service was acknowledging the difficulties that they may face, and seeking to address them, however imperfectly. This allowed some service users to feel less anxious about coming into treatment where they would be expected to eat the food supplied, and also to try foods they found challenging, as they knew a familiar alternative could be supplied if they could not face the food they had selected to try. Like any menu, the PEACE menu does not meet all needs and preferences, so regular feedback, review and continuing development are needed.
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This blog post aims to provide dietetics with a greater understanding of the development of the PEACE care pathway and how dieticians can support.