Experiences of cooking together among people with intellectual disabilities and staff

Abstract

People with intellectual disabilities face challenges related to health, including those associated with food and eating behaviour. Participation and inclusion are closely linked to health and wellbeing, and relate to people’s equal value, autonomy and integrity. Improving cooking skills as well as social and communicative competences by cooking food together and having shared meals might make a major contribution to good health. The aim of this qualitative study was to explore cooking together by people with intellectual disabilities and staff at a daily activity centre in Sweden using interviews, observations, a focus group and a digital diary. Six themes were identified: Clear, simple and a flexible approach; Courage and curiosity; Cooking as learning; Participation through cooperation; Building relationships and competences; Pride and joy. Cooking and eating together have major implications not only for learning about food, but also for promoting health, well-being, participation, and inclusion.

Keywords

cooking together health intellectual disabilities meals participation

Introduction

People with intellectual disabilities are a heterogenous group who face challenges in society that are often extensive. In general, people with intellectual disabilities have poorer health compared to others (Emerson and Baines, 2010; Hughes-McCormack et al., 2018; Nylander et al., 2014), commonly related to overweight and obesity, cardiovascular diseases and diabetes type 2 (Cartwright et al., 2015; Flygare Wallen et al., 2018; Hove, 2004). Several of these health issues are associated with lifestyle factors (Adolfsson et al., 2008; Bergström and Wihlman, 2011), including food and eating behaviour (Røstad-Tollefsen et al., 2021). Adherence to a healthy diet has been shown to be lower among people with intellectual disabilities (McGuire et al., 2007; Robertsson and Emerson, 2000), with low intakes of fruit and vegetables (Adolfsson et al., 2008) and high consumption of products high in sugar (Gast et al., 2021). Even though some studies indicate that people with mild to moderate intellectual disability show some understanding of what a healthy diet means (Caton et al., 2012), strong preferences often impact their actual choices (Jobling and Cuskelly, 2006). Difficulties in making varied food choices, estimating what a normal size portion is, and evaluating when they are full are also common (Ptomey et al., 2013). Reflecting on the possible health impacts of their choices is often challenging (Adolfsson et al., 2012) and people with intellectual disabilities more often demonstrate poor understanding of the consequences of certain foods and eating behaviour (Bergström and Wihlman, 2011; Kolset et al., 2018).

However, health is not only determined by a person’s heritage and lifestyle, including food and eating behaviour, but also by factors such as socio-economic, cultural, and environmental conditions (Naidoo and Wills, 2016). Active participation and being able to influence one’s own life is considered to promote health, and central to equal health (Prop. 2017/18: 249), i.e. that everyone should be given the social conditions necessary for good health on equal terms (Prop. 2017/18: 249). Participation is closely related to power and decision-making and relates to people’s equal value, autonomy and integrity (Bülow et al., 2012). People with intellectual disabilities often have less self-determination than other groups (Wehmeyer and Metzler, 1995). Central principles of the UN Convention on the Rights of Persons with Disabilities (CRPD) (UN, n.d.-a) are the right to live independently, participate fully in public life, including the right to the best possible health. The 2030 Agenda for Sustainable Development further addresses the promotion of well-being, reducing inequalities, and promoting inclusive and empowered societies for all (UN, n.d.-b). Considering human rights, CRPD, and the 2030 Agenda, it is desirable to involve people with intellectual disabilities and empower them to promote their health. To enable participation in society, as well as to shape meaningful and independent lives, people with intellectual disabilities have, according to the Swedish law on support and service for certain disabled persons [LSS] (SFS 1993:387), the right to certain services, including daily activities for people of working age who are not in employment or education. This is a form of disability service run by the municipality, functioning as a substitute for regular employment. In Sweden there are about 30,000 people involved in daily activities under the LSS legislation (The National Board of Health and Welfare, 2023).

In daily activities as part of the LSS, the staff often play a central role in guiding, supporting and facilitating food and meal practices for people with intellectual disabilities (Adolfsson et al., 2012). Depending on their level of cognitive functioning, previous research has shown that there might be a need for the staff to make decisions regarding food and meals (Adolfsson et al., 2012, 2019; Melville et al., 2009; Røstad-Tollefsen et al., 2021). This implies that the staff need to manage the dilemma of guiding and facilitating healthy food choices while at the same time respecting the autonomy of the individual, which is often challenging (Cardol et al., 2012). The staff have great importance in promoting health for people with intellectual disabilities, also in relation to food (Bergström and Wihlman, 2011), and in motivating healthy food and eating behaviour (Hamilton et al., 2007). Røstad-Tollefsen et al. (2021), found that one of the most important factors to enable staff to promote a healthy diet among people with intellectual disabilities was practical cooking skills, so they could teach how to cook. This has also been emphasized as increasing nutritional status among residents with intellectual disabilities (Goldschmidt and Song, 2017). However, limited knowledge and a lack of formal education related to food and meals among the staff might be a barrier not only in teaching and motivating residents to cook, but also in facilitating healthy eating among people with intellectual disabilities (Røstad-Tollefsen et al., 2021).

As part of maintaining good health, but also in order to foster independence and enhance social competence, the ability to buy and cook one’s own food might be essential. This process can support learning about food and nutrition, as well as developing important skills in planning, decision-making, and preparing of meals (Granberg et al., 2016). Research has shown that many people with intellectual disabilities cook to a lesser degree, relying more often on fast-food options, struggle with following recipes and handling cooking equipment (Asher et al., 2024; Johnson et al., 2011). There is a great need to strengthen their cooking skills, as well as their overall nutritional knowledge (Barnhart et al., 2019). Being able to cook might as well impact the food choices made, making cooking an active process, and preparing and cooking food can, therefore, be a way to work with health promotion (Hartmann et al., 2013). Moreover, cooking has been described not only as an instrument for achieving healthy food habits, but also strengthening other capacities (Barnhart et al., 2019; Bennett and Cunningham, 2014), including becoming actively involved in everyday life activities. Furthermore, cooking together with other residents and/or staff has been shown to be related to improving social competences and can increase confidence and self-governance (Barnhart et al., 2019). However, research within this field is limited, especially in relation to daily activities as part of LSS. It is, therefore, important to gain further knowledge and understanding of how people with intellectual disabilities themselves, experience cooking together, and how this activity can strengthen their involvement and participation in everyday life, and increase their knowledge about food.

In this study, the purpose has been to explore cooking together as a collaborative and participatory work involving people with intellectual disabilities and staff at a daily activity centre as part of the LSS in Sweden.

Material and methods

Methodological approach

The study has been inspired by ethnography (Hammersley and Atkinson, 2007) in order to obtain a close, detailed understanding and description of people’s experiences and thoughts, and the setting. Based on the aim of exploring cooking together, and increasing the understanding of the experiences of people with intellectual disabilities and staff at a daily activity centre, different qualitative methods have been used, including participatory observations, interviews, a digital diary, and a focus group. This has provided the participants with different tools for expressing their experiences, increasing the possibility for inclusion and involvement in the study. This methodological approach enabled the possibility to both observe and interact in the cooking activities taking place. Combining different qualitative methods and approaches (i.e. triangulation) can also be valuable for increasing the credibility and validity of the study result (Lincoln and Guba, 1985). Moreover, as part of an ethnographic approach, using different qualitative methods further enabled us to listen to the voices of the participants, not only verbally, but also through body language, mood and emotions, and to use all our senses to gain a deeper understanding of the field (Booth, 1996; Nind, 2008). In this regard, there is a great need for methodological awareness, sensitivity reflection, and as a researcher to be recurrently present in the field and to interact with the participants over time, as well as to be innovative and creative in designing and combining methods (Dreyfus, 2022).

Context and participants

The study was conducted at a daily activity centre for people with intellectual disabilities as part of LSS in Sweden, and had a specific focus on cooking together. The centre was located in a rural setting on a small farm in the southern part of Sweden where the participants cooked outdoors all year round. They had access to an outdoor kitchen, with barbecue, and a dining area under a roof. There were indoor premises with an office and a meeting room, and a storage room for food. There was also a small cultivation area at the farm, which the participants were responsible for and where they could grow vegetables and herbs.

The participants in this study were all part of the daily activity within LSS that focuses on cooking together; some had joined the activity at the start in 2014 while others had been there for a shorter time. In total, six participants with mild to moderate intellectual disability, four men and two women, aged between 20 and 60 years, and three staff, consented to take part in the study. During fieldwork there was a change of one person in the staff group, going from two women and one man to one woman and two men. All participants were raised in a Swedish context.

The fieldwork

Initial contact was established with the daily activity centre with regard to investigation of the experiences of cooking together. Before starting the fieldwork, meetings were arranged with the staff and the participants with the aim of getting to know them and presenting the study.

The fieldwork was conducted in four phases where different methods were used.

1. Digital diary: The study started during the Covid 19 pandemic in 2020-2021 and due to the restrictions taking place during this period, a “digital diary” was initially employed, using a specific digital platform to communicate with the participants. The participants were encouraged to share experiences and thoughts regarding their cooking together activity. To inspire communication, the platform was also used to ask the participants questions and try to capture their experiences, for example “what have you cooked today”, “What are you planning to cook next week”, “What was fun?”, “Has anything been difficult”. The participants were encouraged to write or to take photos or make short recordings to upload onto the platform. This digital diary approach also enabled everyone to communicate according to their own abilities, and most were already used to digital communication. The digital diary was used from February to June, 2021.

2. Participatory observations: In total, eight observations were conducted from June to September 2021, where we took part in the cooking activities and in cultivation. During the observations, informal conversations were held with the participants and staff, and questions were asked regarding what was being carried out. This has been documented in the field notes taken. The observations also enabled interactions with all the participants, regardless of the participants’ verbal abilities. Pictures were taken to be used in the upcoming interviews. The observations often lasted between three and four hours each.

3. Semi-structured interviews: Interviews with the participants were conducted during the spring of 2022, either individually or in pairs. One member of staff joined as support during two of the interviews. In total, seven interview sessions were conducted with five of the participants, where we met each participant or pair twice, on two different occasions. In the result, the interviewees are numbered 1-5, followed by number 1 or 2, depending on if it was the first or second interview with that person. An interview guide was used which included questions about what they did, how they did it, what they have learned, and what they thought about cooking together. Pictures taken at the observations were also used. The interview was organized according to the different steps in the cooking activity which emerged during the participatory observations (phase 2); this facilitated the creation of meaning and order for the participants. During the interviews with participants who had limited verbal speech, pictures of, for example, plates, cutlery, glasses and napkins were used primarily to point at, depending on the questions being asked. During these interviews, symbols of “thumbs up” and “thumbs down” were used to express attitudes and opinions related to cooking and eating together.

4. Focus group: One focus group with three members of staff was conducted to gain their perspectives and experiences. A separate interview guide was used including questions related to the meaning of cooking together, key ideas, challenges, and what it brings to participants. The focus group was conducted online and took place in October 2021.

Data material and analysis

To enhance the trustworthiness and richness of the findings, we employed methodological triangulation by combining and analysing multiple qualitative data methods across the four phases of the study. The digital diary resulted in online written and visual material, provided participants’ self-documented reflections and experiences (Phase 1). Field notes were taken during and after the observations to further capture contextual and non-verbal aspects of the cooking-together activity (phase 2). Through content analysis of the observation material, a clear structure of the daily activity of cooking together emerged, consisting of different steps. The interviews (phase 3) and the focus group (phase 4) took their starting point from these steps in the cooking together activity, and thereby drawing on prior data. The interviews and the focus group were video-recorded and then transcribed verbatim, and included additional notes made on body language and movements when showing and pointing at pictures and artefacts. Thematic analysis inspired by Braun and Clarke (2006, 2021) was used to analyze the entire material. The transcripts from the interviews and focus groups, the field notes from the observations, and the online material were read through several times to gain a sense and understanding of the entire material; the recorded videos were also watched repeatedly. Codes were generated, resulting in overarching themes that were identified based on the overall aim of capturing the experiences of and thoughts about cooking together, and grounded in a comprehensive understanding of the entire material. To secure the accuracy and relevance of the themes, and to include the participants in the research process, the themes were also presented and discussed with the participants and staff (in 2022 and 2023). This use of member checking is often perceived as valuable, especially in qualitative studies, to increase the validity of the results (Creswell, 2005; de Loyola González-Salgado et al., 2024).

Ethical considerations

This study has been approved by the Swedish Ethical Review Authority (2020-06221). The daily activity centre initially contacted the researchers for the possibility to scientifically exploring the activity of cooking together at the daily activity centre. Thereafter, the manager of the daily activity centre was informed about the study and gave consent to conduct it with participants and staff. Staff at the daily activity centre were also contacted prior to data collection to discuss the design of the project and data collection in the specific parts based on the participants’ cognitive abilities. Their knowledge of the participants was crucial for the implementation, both in terms of easy-read information and the approach to data collection. Easy to read written consent was obtained from all research participants. Information about the study, including purpose and conduction, was given verbally by the researchers on several occasions, and in writing to all research participants. It was recurrently emphasized that participation was voluntary and that participants and staff had the right to withdraw their participation at any time without further explanation.

When conducting research with people with intellectual disabilities, it is important to enable participation and avoid unnecessary exclusion, as well as prevent non-consensual participation (McDonald et al., 2024). This entails a balancing act where tailoring information and support so they understand what their participation involves, yet at the same time not leading people to feel persuaded to participate (Cameron and Murphy, 2006). In this study, staff were helpful in obtaining consent from participants at the daily activity centre, since they had knowledge of and could adapt information to participants’ needs and cognitive abilities. However, to ensure that participation was voluntary, the information was followed up by the researchers together with the participants, on several occasions during the study, especially before each interview. Fictitious names have been used for quotes given in the results section.

Results

The thematic analysis of the data material resulted in six overarching themes: Clear, simple and a flexible approach; Courage and curiosity; Cooking as learning; Participation through cooperation; Building relationships, social skills and competences; Pride and joy. The findings are presented according to these themes and also incorporate the various steps of the cooking together activity that initially emerged in the data material. These steps were preparing, purchasing, cooking, setting the table and serving the food, eating and growing the food.

Clear, simple and a flexible approach

The participants emphasized the importance of using simple recipes with few ingredients. They also highlighted the need for structure and organisation, such as maintaining order in the storage room, to ensure clarity and facilitate participation by making it easier for everyone to find tools and ingredients for cooking. In addition to clarity and simplicity, a clear need for flexibility was identified, in order to enable participation based on each individual’s abilities.

The first step of the cooking together activity was starting to prepare what food to buy and cook. Generally, one person (participant, not staff) was responsible for choosing recipes to cook in the coming week. The choice of recipes was made either independently or with support from staff. The staff often assisted in simplifying the recipes so they could be used by everyone. Depending on the participants’ interests and abilities, they used different sources of inspiration, for example cookbooks with pictures, social media and TV programs.

Axel: Yes, we usually look at that too, Master Chef (note: TV program). There we also get inspiration (…). (Interview 3:1)

One of the participants, Adam, said that the staff could present them with challenges related to the planning of what to cook, such as asking them to come up with something new or recipes related to seasonal foods. As the recipes needed to be simplified, he saw it as one of his tasks to do so.

Adam: yes, it’s because of the language when you download the recipe from YouTube and I sit there I have to make sure that everyone can understand (…) and then I remove some elements, not unnecessary but maybe not needed (…). (Interview 1:1).

Moreover, inspiration also came from other daily activities in which the participants were involved, as well as from their own cookbook, which had been created and published by the participants and staff together. This cookbook was also characterized by recipes with easy instructions and few ingredients.

Adrian: It’s our own cookbook. Axel: And it’s simple, few ingredients, it’s easy to understand and use. Then there are the seasons. The cheapest things are in it too. (Interview 3:2)

After shopping together, they routinely sorted the food when getting back to the centre. This was done in designated baskets and in the storage area where they had food and supplies for cooking. The sorting was done according to the current recipes for each day of the week. The baskets had a number for each weekday, as well as pictures to make it easier to understand what foods should be in each basket. This provided structure and order, and made it easy to find the food items needed for each day.

The importance of order and structure was emphasized by Anna (Interview 4), she explained, with help from the staff member sitting beside her at the interview, that she could pick up the things when they were ordered, because then she always knew where to find them. She also showed the “thumbs up” picture when talking about “picking up goods” during the interview.

Although common meals were often described as positive, they could also be challenging for the participants. This could be due to the participants’ physical and mental well-being on a specific day, but also because eating together could be an energy-demanding social occasion. This meant that the meal needed to be flexible and adjustable, for example that the participants had the possibility to leave the table as soon as they were finished, but also that they often needed to rest afterwards.

Courage and curiosity

When cooking together the participants gained confidence and increased their courage to try new dishes, to trust their own competence and abilities, but also to have the courage to make mistakes, to be curious and try new, unfamiliar things. In the focus group with the staff, the importance of courage, but also curiosity, was highlighted.

Albert: I think it’s curiosity, number 1, that they have become curious about food, and that you take away the insecurity from them.

Agnes: That they can, that they have the courage, the more they try, the more they dare to do, they gain self-esteem.

(…)

Albert: I think it’s this… feeling of success, I think that’s what they take with them home and then they dare to try at home (FG Staff)

Several of the participants expressed how they gained new knowledge as well as courage to also cook more food at home. One participant described using signs and, with help from the staff, that she now cooks food for her neighbours at the assisted housing where she lives. She also showed how she used recipes at home that she had already tried at the daily activity centre.

Cooking as learning

Cooking together was also described as a learning activity. They talked about learning different recipes and how to combine ingredients. Having their own cultivation was also talked about in terms of learning to plan, learning from previous years, and taking responsibility and caring for what was grown.

As part of the cooking activity, the staff and participants made the purchases together once a week based on chosen recipes. They always went to the same supermarket, which was described as positive since it increased the possibility of recognizing and learning where and what products were available. In the supermarket they could see and compare different products, which also provided opportunities for learning about food and nutrition, as well as products and prices. André expressed, with help from the staff sitting beside him during the interview, that he enjoyed running and picking up things in the supermarket (Interview 2:1). When Anna was asked to choose between a picture showing in-store or online shopping, she showed signs that she was pushing something in the shop (basket/cart) and that she was picking up goods and putting them in it. She pointed to a “thumbs up” picture for shopping in-store (Interview 4). One of the participants expressed that he missed shopping in the physical store during the Covid-19 pandemic, but that it worked to shop digitally. He justified what he missed.

Axel: It’s nice together and you learn where all the stuff is and you learn what are the vegetables, what are the fruits. Adrian: Where the apple is, the bananas and the clementines (…). (Interview 3:1)

Participation through cooperation

In the different steps of cooking together, the participants cooperated and were given specific tasks based on their abilities and interests. In the supermarket, the participants cooperated in finding the products they needed. The purchasing of food could also increase the possibility of autonomy, such as by taking responsibility for different tasks in the store.

Adam: so we all get the foods (…) each one gets a day (…) you add it to your shopping cart, then when everyone is ready, you go together to the cash registers and put it there, then you try to categorize them in bags so it will be easier later but sometimes it’s not (…). (Interview 1:1)

Before the participants began cooking, they gathered ingredients and kitchen utensils, i.e. cooperated and collaborated according to each other’s abilities, to get out what was needed for the cooking.

Adam: yeah, if it’s me working with Anna I usually have to read, she usually gets to pick because she can’t read yes she knows sign language but I don’t that but then it becomes easier so then I say get two knives and she knows exactly and gets it, then she’ll know exactly where it is because I don’t really know where everything is. (Interview 1:1)

The division of work and responsibilities depended to a large extent on the participants’ abilities, their willingness to participate, and help and support in the different steps of cooking together. The idea was that everyone could contribute.

When cooking together, the participants had different tasks, often based on their various skills, abilities and competences, but also interest and motivation. Cooperation was important and the staff described how it was essential to facilitate and encourage this, based on the belief that everybody could participate, but in different ways. One of the participants described what this work division and cooperation could look like, as well as the fun in cooking together.

Axel: And then it might be one who cuts vegetables, someone cuts the meat or that you do both, cut vegetables, both. (…) It’s the cooking that’s most fun, well also preparing, chopping… (Interview 3:1)

The need to cooperate, encourage and help each other was repeatedly stated by both participants and staff, and could imply that someone was reading the recipe while the other mixed and stirred the ingredients together, and that those with higher abilities got more of a leading role.

Adam: It can be that sometimes when I have got the task to, for example, I just read what it says in the recipe and then Anna bakes, I read the recipe and then she does it exactly, and what she doesn’t know she asks me and then I show her (…) (Interview 1:1)

Moreover, the participants often cooperated and helped each other with setting the table for the common meals. However, they could have different priorities concerning what should be on the table. For those participants who had limited verbal speech, pictures and other artefacts were used during the interviews for them to show what they considered important. Anna (Interview 4) chose a candlestick, and the staff added that they do sometimes have this as well. Anna also chose flowers on the table as something she likes.

Building relationships, social skills and competences

While deciding what to cook, the participants described how they could get ideas while eating together. The staff said that when recipes were being selected and dishes planned, these were often based on different food memories that could be a gateway to getting to know a person and to build relationships. The staff further explained how the planning and choosing of recipes contributed to social and communication skills, but that other skills could also be practiced. They expressed that cooking integrates different skills, for example learning to count, i.e. math, or learning to read through recipes.

The staff also explained how differences in abilities and skills were handled in the cooking practice, to ensure that everyone could participate.

Annie: (…) where you find moments in a dish where those with higher abilities can just go for it and where those with lower abilities need to take it slower, but in the end they meet in the joint dish. I mean, where the person with higher abilities becomes challenged when finely chopping the onion, for example, because that is something that this person can do, those moments in the dish, and then the other person “just” does a salad, but they still serve the dish together. It really gives satisfaction. (FG Staff)

Depending on skills and abilities, the participants were both given and took different roles and tasks in the cooking activity. It became apparent how those with higher abilities were helping those with lower abilities, but also how those with higher abilities could act like the staff when there were no staff available at a specific moment. This was demonstrated by certain activities taking place, but also in the language used by the participants.

Agnes (staff) was away for a short while and when we came back, Axel had taken something of a leading role in the cooking. They were all working with the different tasks, and it was apparent that Axel told the others what they should do, but also that Adrian should be patient and wait for further instructions from Agnes (the staff) about what to do next (…) Axel stood next to André and explained how he should cut the cucumber. He said for example: “This is how I usually do it” regarding how the cucumber should be cut, just like Albert (staff) usually says that to the participants. Instead of saying “do it like this”. (Extract from field notes, 210826)

The participants and the staff always ate the food that had been cooked together as a common meal. During the meal they often talked about the food, how it tasted, about the spices used and how the cooking was perceived, and also how it could be improved or changed for another time. For example, the participants talked about how they now always have salad with the food, which for some, was never the case before.

Axel: But while we eat, as I experience it, then there are a lot of discussions, we have a lot of discussions about the food. Also what you do with pasta, about cooking time (…). (Interview 3:1)

The participants who had limited verbal speech might be quite silent during the meal, but it was seen how they could participate in the conversations by using “thumbs up or thumbs down”. Talking with each other about the food that had been cooked was described as central during the meals, and the staff also stated how this was a crucial part in building relationships. The food was described as having great potential as a starting point for further conversations about different topics.

Agnes: (…) this cohesion and the interest in the food, and the conversations, especially when you sit and eat and when you cook together. How much the participants are growing through this (…)

(…)

Annie: (…) they [the participants] get to know each other through food memories, and then, based on that, this leads to other questions about where you have worked, where you have lived and where you live now. It is not easy with these social codes, it is quite difficult for many, but by being able to talk to each other, you can come quite far. (FG Staff)

The staff also talked about the importance of communicating to the participants that all are entitled to their own tastes and opinions about the food, which could also be challenging. A part of this was also to learn to give as well as take feedback about the food.

Pride and joy

The participants recurrently expressed pride and joy of the cooking activity, which was also expressed in the different steps. In deciding on what to cook, staff and participants sat and planned the coming week’s dishes, which was often described by the participants as both fun and encouraging.

Anna (participant) flips through the cookbooks, pointing at the pictures. She often asks “what's that?” Annie (staff) describes what it is and if it is something Anna wants, they put a post-it note on the page. Once they have agreed on 5 recipes (that Anna wants) they sit down with the recipes and then Annie rewrites it on the computer and adapts both the quantity and the description of what to make to suit the participants. The others won't know what it is - it will be a surprise. Anna seems engaged and enjoys deciding what to eat, while keeping it a secret from the other participants. It seems to make her feel like she's doing something important. (Extract from field notes 210609)

This also revealed feelings of pride and joy in being the one who plans the food to be cooked the following week.

Overall, doing the cooking together was described by the participants with pride and joy. In the digital diary, the participants showed pictures of them cooking together, and in the interviews they expressed pride when cooking their own food was described.

Axel: When you cook together, you learn so much, you get a bit prouder when you can cook by yourself. (…) Yes, it was when I made pizza I think, I’ve made my own pizza. When I did that for the first time, that I thought was fun, and then you also felt “I could do this”. (Interview 3:1)

Anna, with only limited verbal speech, said “I am good” when talking about the cooking that she was now also doing at home (Interview 4).

Those responsible for cooking the food for a specific day also put the food on each plate and served the others. This was described as an important task. Anna related this with a thumbs up when talking about putting the food on the plates and serving the others (interview 4). Most participants expressed that it was important that it looked “nice” on the plate, and that you could see all the food.

Both the participants and the staff repeatedly mentioned the feeling of pride and joy when they (the participants) could serve something good to eat which they had cooked themselves.

Interviewer: How does it feel to sit there at the table and eat together?

Axel: Nice! And when you have cooked something and set the table you feel happy. (Interview 3:2)

The staff also noted the importance for the participants’ self-confidence and self-esteem of inviting their colleagues to eat the food they have cooked.

Annie: I think it means a lot for their pride and self-confidence and self-esteem, to invite your colleagues to eat food, where they then… some give feedback and say it’s delicious and that it’s the best thing they’ve ever eaten, some say nothing at all, but you are seen in some way, without giving a speech or anything, you just serve the food and you are seen (…). (FG Staff)

The participants expressed pride and joy at being able to grow something they could then eat. One example of this was from one of the observations held just before the Swedish Midsummer.

Axel goes off to get a brush for the marinade and when he comes back, he exclaims: You know what I’m longing for? I can’t wait for Midsummer, then we’ll eat new potatoes and herring and strawberries that we have here, all of it. This came so spontaneously and honestly from his side, and he appeared to be excited and happy about this, that this was something that they were now cultivating themselves. You learn all the time, says Axel, for example that you shouldn’t grow the same thing in the same soil two years in a row, and then you must keep the weeds down. (Extract from field notes, 210609)

Pride was also expressed by showing and telling the people visiting the farm about the cultivation. This was also apparent in the digital diary where the participants, through film clips and text messages, guided around with a camera, expressing pride and joy in the place and the cultivation.

Axel: It’s fun to be in Skafferiet (note: the cultivation), you learn new things and it’s fun when it starts to grow, exciting. When guests (note at the farm) walk by and talk to Axel: It’s fun to be in Skafferiet (note: the cultivation), you learn new things and it’s fun when it starts to grow, exciting. When guests (note at the farm) walk by and talk to me, I feel happy and proud. (Digital Diary)

Discussion

Cooking together as a daily activity by the people with intellectual disabilities has several important roles and implications beyond the nutritional value of food and eating. The study clearly demonstrated how the cooking together activity generated curiosity for food and different ingredients, and courage to try new foods and unfamiliar combinations of tastes. Moreover, cooking together was described as an occasion to learn about food, different ingredients and tastes, and it was an activity where everyone could participate on their own terms, based on their own abilities. Through cooperation, but also by keeping it simple, clear and having a flexible approach, they created common meals every day. They also trained their social skills and competences, and at the same time they built relationships with each other. The cooking activity also gave the participants a sense of pride and joy in what they were achieving.

Previous research has revealed several challenges related to health in general, and food habits and eating behaviour in particular, among people with intellectual disabilities (Asher et al., 2024; Flygare Wallen et al., 2018; Røstad-Tollefsen et al., 2021). Cooking skills are often limited (Barnhart et al., 2019), as are the understanding of the consequences of a certain eating behaviour (Adolfsson et al., 2012; Bergström and Wihlman, 2011; Kolset et al., 2018). The findings of this study showed that by keeping it clear, simple and with a flexible approach, everyone’s participation in the cooking activities was facilitated. This also aligns with The Convention on the Rights of Persons with Disabilities, which addresses the right to communication and participation (UN, n.d.-a). Information and instructions must be formulated in a way that people with intellectual disabilities can understand, to make it easier for them to participate in activities and promote independence. In the cooking together activity, recipes were simplified by reducing the number of ingredients and shortening the instructions. Studies have shown that the number of steps and ingredients involved in preparing the meal affects the level of difficulty. If recipes are too difficult, this hinders independent cooking (Granberg et al., 2017). On the other hand, making meals easy to prepare increases the ability of people with intellectual disabilities to cook independently (Subach and Sullivan, 2022). The cooking together activity with clear and simple recipes gradually enabled the participants to cook meals independently, or when needed, with some support at home. By simplifying recipes, people with intellectual disabilities can be empowered to cook on their own or with less support.

In addition to keep it clear and simple, maintaining order and structure was essential to help the participants manage the cooking tasks and support inclusion. Shared meals also needed to be flexible and adjustable, for example allowing participants to leave the table once finished, or rest immediately after the meal. By ensuring tasks were simple, clear and with a flexible approach, cooking became comprehensible and manageable for the participants, which also aligns with the Salutogenic model (Antonovsky, 2005). This is not only a health model, but also an approach, and a way of working to create supportive environments that promote health (Mittelmark et al., 2022). The model’s key concept Sense of Coherence (SOC) consists of three elements: comprehensibility, manageability and meaningfulness. Comprehensibility refers to experiences being predictable and understandable, while manageability means that there are necessary resources to cope with tasks. Meaningfulness is about participation and things having emotional significance, such as meaningful activities that build community and relationships with others.

Food and meals can serve as a social glue between individuals and groups (Paulain, 2017), as is also evident in this study. Through cooperation and collaboration, the participants not only gained knowledge about food from different perspectives, but also developed relationships with each other. In talking about food to prepare and cook, deciding together what vegetables to grow, or what to buy in the supermarket, communication between the participants was facilitated. They learned about the other participants’ food preferences and shared food memories, and in this way, food and cooking played a central part in building relationships in the group and with the staff.

Cooking together was a large degree about building relationships, and to learn social and communicative skills. Previous studies support these findings, where cooking and eating together, and navigating social meal situations, both require and strengthen social skills (Adolfsson et al., 2010; Barnhart et al., 2019; Bennett and Cunningham, 2014). In a newly published article on the experiences of gardening with a group or people with learning disabilities (Jones et al., 2024), both social and practical skills and achievements were emphasized as being strongly gained.

The cooking together activity was described both by the participants and the staff as an opportunity for learning – about food ingredients, tastes, and how these could be combined, as well as about cooking practices. The participants learned about different recipes, where these could be found, and also how to adjust them. Moreover, they learned how to grow their own food, where the food comes from, how to harvest it, and where it is grown. It is well known that new food items, combinations of foods and tastes are more often tried in familiar settings considered safe (Herman et al., 2003). The participants also developed a food and sensory vocabulary that enabled them to express their perceptions of the food and suggest possible improvements.

Importantly, the cooking together activity fostered a curiosity among the participants about food, ingredients, tastes and how different food items could be combined, which was also stimulated by cultivating their own food, and observing the process from seed to plant. Cooking together not only encouraged exploration of new ingredients, but also built confidence to try and cook unfamiliar foods and to use new cooking techniques, also shown in other studies (Barnhart et al., 2019; Gutierrez et al., 2020). This also implied accepting mistakes as part of the learning process. Moreover, sharing meals also made the participants more willing to taste what was on the plate, which also impacted cooking in a positive way in their home environment. Overall, cooking together can be seen as a strategy to facilitate and motivate healthy eating, with curiosity serving as a tool for encouraging new food habits.

The staff plays an important role in facilitating and motivating healthy food behaviour (Adolfsson et al., 2012; Röstad-Tollefsen et al., 2021), as well as creating conditions for everyone to participate and cooperate in the different steps of cooking. Previous studies (Adolfsson et al., 2012) have also shown that interaction and communication between staff and participants influences the possibility of participation, as well as the content of the meal prepared. In this study, the staff emphasized the need to be responsive and flexible to everyone’s needs, but also their role in continuously stimulating the participants’ learning about food, and in trying new food items and dishes. The latter has also been shown in other studies (Cartwright et al., 2015). Previous research related to food habits and health among people with intellectual disabilities has demonstrated a limited variety of food choices, buying more fast-food, and cooking to a lesser degree (Adolfsson et al., 2012; Barnhard et al., 2019); learning to cook and cooking together can therefore have important health implications for this group, even in their own living facilities. Moreover, several challenges related to health are connected to lifestyle factors (Adolfsson et al., 2008; Bergström and Wihlman, 2011) and cooking, being a common activity, can therefore be regarded as a health-promoting activity (Hartmann et al., 2013).

Throughout each step in the cooking activity the participants cooperated, this could be in the supermarket, when preparing the food, setting the table, and serving the food. The main idea was that everyone could participate, albeit in different ways. The division of work and responsibilities depended to a large extent on the participants’ abilities, as well as their willingness and interest in the different steps of cooking together. Svanelöv et al. (2019) demonstrate in their study involving people working in a daily activity centre that participation can be understood as social interaction, and as engagement in work-related tasks. Social interaction, such as spending time together, engaging in conversations and sharing meals, is a prerequisite for participation. Furthermore, involvement in activities perceived as work creates conditions for participation. Participation also requires decision-making, such as considering the views and opinions of other participants (Svanelöv et al., 2019). In the cooking activity the participants were given and took on a range of complimentary roles and tasks in the cooking activity, complementing each other. It became apparent how those with higher abilities not only supported others with lower abilities, but also assumed leadership in guiding and supporting others to complete simpler parts of the task. This approach demonstrates the potential for greater inclusion.

Furthermore, the participants gained competences and confidence in expressing their preferences, acknowledging and respecting that people have different tastes, as well as how certain tastes could be improved. As part of these social skills, giving and receiving feedback during the meal when the food was prepared and cooked, were also important. Moreover, the participants expressed a recurring sense of pride and joy in relation to the different steps in the cooking together activity. Having the responsibility to decide what to cook, setting the menu, and deciding what recipes to choose, was described as joyful. There was also a clear sense of pride in showing their own small garden to visitors. Cooking for someone else, inviting them to a meal, and getting positive feedback, have also been acknowledged previously in the literature as essential social and emotional acts (Farmer and Cotter, 2021). Food as a gift, exemplified as cooking food for someone else, has been described earlier, initially by Marcel Mauss (Shuman, 2000), as an expression of social relations and feelings of companionship, commensality, and friendship. Overall, the activity of cooking together, including taking responsibility for and creating meals that others appreciate, becomes meaningful and motivational to the participants, which also relate to the dimension of meaningfulness in the SOC (Antonovsky, 2005).

Methodological reflections and study limitations

This study is unique in that it ethnographically explored the thoughts and experiences of cooking together in a group of people with intellectual disabilities in Sweden. The number of participants was limited; however, all those who were part of the cooking together activity participated in the study. Involving people with intellectual disabilities in research can be challenging and requires time and engagement in building relationships and trust (Chalachanová et al., 2020). The study started during the Covid-19 pandemic in 2020, which challenged the way physical meetings could be arranged. Digital communication, including a digital diary with text and pictures describing their cooking activities, helped us to continue the study, and build continuity and trust with the participants. However, conducting the observations and the interviews required physical presence with the participants, as well as building relationships over time through long-time ethnographic engagement. Maintaining flexibility throughout the study, especially in relation to the participants’ mood, interest and level of engagement was ethically important. At the same time, it was crucial to remain sensitive and avoid making unwarranted interpretations solely on emotional expressions or temporary mood.

Some of the study participants were able to communicate verbally, while others mainly by signs or pointing. Therefore, an overall strength of the study was the use and combination of data from including various ways of giving voice and participating. During some of the interviews it was necessary to have one of the staff members translating or helping with understanding. The staff only assisted when necessary and as a support; however, it was an essential part in aiming for inclusion of all participants in the cooking activity.

Conclusion

As an activity for people with intellectual disabilities, cooking together provided the participants with skills and competences, such as communication and collaboration, that go beyond how to buy, prepare and cook food. It created pride and joy, and a feeling of success and meaningfulness. Through actively participating in making meals that are shared and enjoyed by others, cooking together enabled the participants to show ability, rather than being defined by their disabilities. Based on the broad perspective of challenges related to health faced by people with intellectual disabilities, cooking together can be a valuable tool, not only for facilitating healthy food habits, but also in promoting overall well-being, self-determination, and inclusion in everyday life activities.

Footnotes

Acknowledgements

We want to thank the participants and the staff at the daily activity centre, for their initial contact with us, and for sharing their experiences in relation to cooking together. We would like to thank Stiftelsen Sävstaholm for financial support.

ORCID iDs

Eva-Lena Einberg

Maria Nyberg

Ethical considerations

The study has been approved by the Swedish Ethical Review Authority (2020-06221).

Consent to participate

Written and verbally informed consent was obtained from all participants.

Funding

The research has been partly financed by Stiftelsen Sävstaholm, Dnr ST 2021-015.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data Availability Statement

The participants of this study did not give written consent for their data to be shared publicly, so due to the sensitive nature of the research supporting data is not available.

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Experiences of cooking together among people with intellectual disabilities and staff – A qualitative study in Sweden

Abstract

Keywords

Introduction

Material and methods

Methodological approach

Context and participants

The fieldwork

Data material and analysis

Ethical considerations

Results

Clear, simple and a flexible approach

Courage and curiosity

Cooking as learning

Participation through cooperation

Building relationships, social skills and competences

Pride and joy

Discussion

Methodological reflections and study limitations

Conclusion

Footnotes

Acknowledgements

ORCID iDs

Ethical considerations

Consent to participate

Funding

Declaration of conflicting interests

Data Availability Statement

References