The study sample included 13 children (of whom 12 were interviewed) and 15 parents (12 mothers and 3 fathers). Demographic data and clinical characteristics for the children are reported in Table 1. The number of family members following the SCD differed between the participating families (shown in Table 2). Most had SCD-friendly dinners where everyone could eat the main dish, with family members who were not following the diet eating optional side dishes not permitted on the SCD. None of the families reported having previously tried any special diet for JIA; however, one child followed a vegetarian diet, another ate lactose-free food, and a third suffered from nut allergy.

Table 1 Demographic data and clinical characteristics of participating children with Juvenile Idiopathic Arthritis (n = 13) Table 2 Characteristics and description of participation and perception of the intervention

Most interviewed participants found the intervention beneficial, with 12 out of 13 children and young adults reporting positive effects on disease symptoms after two to three weeks of adherence. Improvements included reduced pain and morning stiffness, and increased energy. Some also noticed other positive effects, such as improved gastrointestinal function and reduced hunger. The participants followed the diet for one to three months, and several continued with a modified version. The reasons for eventually returning to a regular diet were primarily social, driven by the desire to eat the same foods as others on occasions such as birthday parties, family gatherings, and especially in school. Motivation was initially high due to symptomatic improvement but waned over time as the children found themselves increasingly tempted in social situations. However, some families noted that motivation increased again when symptoms returned. In addition, the burden on the parents played a role, particularly in their decision to reintroduce more ready-made food items. Nevertheless, many reported that they continued to adhere to some of the core concepts of the diet at home while incorporating store-bought items.

In each interview, the participants were asked the same final question: if they could go back in time with the knowledge they had now after participating in the study, would they still agree to take part? They were also requested to provide a rationale for their answer. As shown in Table 2, many participants would have chosen to take part in the study again. The primary reason was improvement in the child’s symptoms.

While most families were positive to the SCD and reported multiple benefits, they also reported many challenges. The qualitative analysis resulted in two categories representing the families’ main challenges: Managing practical issues and Dealing with socio-emotional consequences (Table 3). Parents generally reported more practical issues, whereas children seemed to struggle more with socio-emotional aspects. Diverse strategies were used to navigate these challenges, as described in the subgroups: Creating the right conditions through food preparation and planning, Reducing costs, and Involving the children. Participants also identified the following areas where a need for additional support was highlighted: Simple, quick and child-friendly solutions, Strengthening organisational food skills, and Financial assistance. To deal with the socio-emotional consequences, the families chose to focus on the positive aspects and relied on the supportive and encouraging environment available. Areas where the families expressed a need for further support were preparation for how to deal with socio-emotional aspects and communication in order to preserve normalcy and mitigate feelings of isolation.

Table 3 Overview of the results from interviews Managing practical issues

The main challenges for the parents revolved around the practical aspects of the dietary change. There was unanimous agreement that implementing and following the SCD required hard work, time and money. Despite having cooked regularly before the study began, planning meals, grocery shopping and preparing food proved challenging for many. When they first started the diet, they had to look for and find unfamiliar products and meticulously scrutinise every ingredient, which could mean spending hours in the grocery store. Furthermore, parents now had to make or prepare products at home which they had previously bought ready-made. Many said it felt as if they spent all their time in the kitchen, from early in the morning to late at night. Several mothers commented that it would have been ‘impossible’ to work full-time during the initial four weeks due to the considerable amount of time required in the beginning.

Creating the right conditions through food preparation and planning

Through lots of preparation and consistent planning, adhering to the diet became easier. Over time, the families learned what products they could buy. To minimise time spent shopping, some families began ordering more groceries online or shopping in a single store and ordering specialty food products online. The parents described the importance of planning and preparing every meal, even snacks. One strategy involved preparing larger quantities and freezing the leftovers to use when there was little time to cook. A few parents spent their weekends cooking and preparing meals for the following week.

“In purely practical terms, our solution was mainly that we, on Sundays I think, cooked a whole load of basic stuff […]. It takes a bit more time and then, during the week, you could just throw something together. So, like, preparing a lot on one day, so it doesn’t take that much time on other days. That’s one tip, I guess. So we made a lot of almond milk then, and mum maybe made chopped tomatoes, yeah, setting aside a certain amount of time, instead of having to try to do all that on weekdays.” (Family D, girl 21 years).

Another strategy the parents used was creating an SCD-friendly environment at home. This meant eliminating food items that were not allowed by not stocking the freezer with foods they couldn’t eat, and clearing out the pantry or parts of it. One parent prepared a drawer with only SCD-friendly snacks for her child in order to help them to stay on track.

“We started the diet by clearing out everything that we couldn’t eat. We just didn’t have it at home. So we gave stuff to neighbours and family, everything that we didn’t want anymore. And that made it easier, because I have noticed that now, if you have things at home that don’t really fit into the SCD, it can easily happen that you use them. So I think one success factor was just clearing all that out, so you only had things you could eat at home.” (Family F, mother).

Strengthening organisational food skills

Many parents were unaccustomed to the level of planning required to manage the new diet and were unsure where to begin. Participating parents identified their lack of organisational skills as a potential reason for not continuing the diet after the initial four weeks, since such a lot of planning and preparation was required. Those who struggled expressed a desire to be more organised. To address this, a few parents suggested that training sessions on meal planning could be offered before the start of the study. They wanted to learn how to create personalised weekly meal plans for their family, step by step, starting from a suggested meal plan.

“I’m not the best at planning, so this thing was really hard. You couldn’t just think ‘So, what are we having?’ and take something out of the freezer or go and buy something. This required a lot more planning, and I found that difficult.” (family L, mother).

Involving the children

In a few families the children got involved in the kitchen to help their parents out. Preparing and cooking together at weekends became a family activity where siblings also participated. One parent recommended letting the children contribute by reading recipes and taking part in the cooking. Some children even came up with recipes for desserts and snacks. An older teen explained the benefits of taking part in the cooking process:

“It wasn’t always the most normal food. But I think that, yeah, it was anyway tasty. I liked most of it. I often helped out when we were cooking and, then, I often feel like it’s tastier when you know what’s in it.” (Family A, boy 18 years).

Simple, quick and child-friendly solutions

Managing everyday life without adherence to the diet becoming too complicated was described by parents as a ‘balancing act’. In hindsight, parents questioned the amount of effort they had put into it, saying that perhaps they could have done things differently to make it simpler and less arduous. A common view was that cooking ‘shouldn’t take time; it needs to be quick’. Although the ambition of most parents was that the whole family would eat the same food, several parents cooked multiple meals to please different family members.

The recipes given out to parents elicited differing opinions. Some found them helpful as meal suggestions and said that ‘it would have been hard to manage without them’, while other families felt that suggestions for quick and ‘simpler everyday food that children and teenagers like’ were lacking. However, introducing new recipes was deemed too much of a change for some families. Many parents preferred to adapt their usual family recipes to the framework of the SCD.

“But I think maybe simplifying what you already eat, trying to start from what the rest of the family is eating… so you don’t have to work yourself ragged.” (Family H, mother).

Reducing costs

Families used different strategies to reduce costs. Some limited the number of family members who ate more expensive food items. However, this often meant cooking several different versions of a meal.

“It’s much more expensive, I mean if you go and buy a bag of pasta made from lentils and peas, it costs five times as much as regular pasta, so if the other girl is having pasta too, we make regular pasta for her and lentil pasta for [EG], because otherwise … the cost of food increases too, so we have to make a lot of duplicate versions when we’re cooking …” (Family E, father).

Another strategy enabling families to reduce costs was buying things online and in bulk. Some parents explained that while they spent more on some foods, they saved on others that were not permitted on the SCD and therefore no longer bought. Cooking simpler meals with fewer ingredients was also a strategy to reduce costs.

“Depending on how you eat, more natural ingredients and stuff can be cheaper too, depending on how you do it. But it depends on how complicated … I don’t make complicated meals, like, so … that makes it cheaper.” (family H, boy 20 years).

Financial assistance

Most families noticed an increase in grocery costs after implementing the diet. Although they came up with various strategies to reduce their spending, they saw a risk that the cost could become a limiting factor for some families, restricting their access to dietary treatment. This financial limitation was considered unfair by many participants. To address the issue, a few parents suggested providing access to financial assistance similar to that offered to families in Sweden with a child with celiac disease which permits the purchase of gluten-free products at a subsidised price.

“So I hope that the families that are maybe struggling can get help somehow. Like a subsidy, yeah, that you can get when it’s for medical reasons, somehow, so that you can get support.” (Family M, mother).

Dealing with socio-emotional consequences

For the children, the biggest challenges were socio-emotional. These were often the reason for returning to eating a regular diet again, despite having experienced symptom relief or anti-inflammatory effects. At home, things generally worked well, but many parents felt under-prepared for the challenges from the outside world. Some friends and family members questioned why they had decided to change their diet, and both children and parents felt left out in certain social situations. One family noticed how dinner invitations became infrequent after changing their diet. Most children had to take lunch to school, which made them feel different since everyone else ate the food served in the canteen. They found it burdensome to explain to their friends why they were bringing food from home. A couple of schools had policies preventing students from bringing food from outside the school into the canteen due to allergy risks. As a result of these policies, children had to heat their food elsewhere, such as in the teachers’ lounge, and eat alone. The children described lunch without their friends as ‘boring’ and they felt ‘unsocial’ and ‘excluded’. Being different was difficult. Another issue was a restricted social life. Being unable to do the same things as before led some to describe a feeling of being ‘stuck at home’. In the past, they could eat out at restaurants, go to a friend’s house after school without having to plan, or grab a snack from a store. They also struggled with feeling that it was unfair when friends and siblings could eat regular food, sweets and ice cream. This was especially hard during special occasions and holidays.

Choosing to focus on the positive

One strategy used by both parents and children was to shift their focus away from dietary prohibitions and activities they struggled with, such as eating out with friends, and instead think of the SCD as an opportunity. Participants generally spoke about the diet as something positive and, apart from the potential health effects, it was regarded as an exciting opportunity to learn, try new foods, and contribute to research.

“It’s good food, I would say, actually, because I feel like it’s good for wellbeing and health and so on, I would say that, actually. It would be good for everyone, really.” (family M, mother).

The children also attempted to focus on the positive in particularly trying situations. After the first two weeks, many of the children became accustomed to the new diet and could appreciate previously unfamiliar tastes and enjoyed the new food cooked at home. One girl explained that most of her friends at school disliked the lunch from the canteen and were jealous of her because she was allowed to bring food from home. Despite not being allowed to eat in the canteen with her peers, another participant chose to highlight some positive outcomes of this, such as not being tempted by what others had on their plates and still being able to spend time with friends after finishing lunch. Another girl explained how she tried to deal with being faced with temptation:

“Yeah, but I guess I thought that it’s better if I eat like this, because then it’ll be much better later.” (Family B, girl 12 years).

Supportive and encouraging environment

A supportive and encouraging environment was considered fundamental to managing the socio-emotional consequences, for both parents and children. Professional support was considered an essential aspect of the families’ ability to implement and adhere to the diet. Overall, the parents appreciated the support they had received during their time in the study. Dedication, praise and a positive attitude from research staff and medical professionals were all mentioned as things that helped give families the motivation to continue and made them feel at ease.

“For one thing, we had a dietitian who was basically always there and we received contact information and so on, so we could contact them, and also we were there and talked to the doctor and then, and, yeah, no, and because we are there regularly anyway, you have a dialogue about it, so there was always support to make use of when we needed it, if we needed it.” (Family E, father).

Within most families, the family members tried their best to support one another throughout the change. Even grandparents became involved and learned how to prepare SCD-friendly meals, lending much-appreciated support to the families. A few parents followed a strict diet to gain a better understanding of what their child was going through and be able to better support them during the intervention.

“But we talked about it before we started, that everyone would be part of it, that we were doing this together. Then I felt that, yeah, I want to follow the exact same diet as FG, to understand what she’s going through and that we’re doing it together.” (Family F, mother).

Children who had parents following the diet with them recognised this and appreciated their efforts.

“My dad and my little brother, you know, they ate regular food, while my mum and I followed the diet, which made it much easier, when you don’t have to be the only person in the family eating it, so that was nice.” (Family H, boy 20 years).

Parents recognised the importance of their child feeling like ‘a normal teenager’ and tried to preserve normalcy for them, to mitigate their feelings of being left out. However, this was easier at home than in social situations. One parent emphasised the value of not paying excessive attention to the diet when continuing it for a longer period, although to still retain a certain level of focus. They spent time, therefore, trying to come up with options that would be acceptable to the child and might resemble foods they enjoyed.

“You tried to make everything as normal as possible. So, I mean, I tried to find dishes and things that could be a substitute so that he could also feel that he got tasty things and fancy things, like everyone else, and we adapted our diet too, we ate the same thing, so he wouldn’t feel like he was the odd one out at home.” (Family A, mother).

Preparation regarding socio-emotional aspects and communication

Before implementing the dietary change, most parents had a conversation with their other children, thoroughly explaining the situation and requesting their cooperation during the study. However, a few participants regretted not having had similar conversations with friends and family since they encountered confusion and resistance from some of them.

“There was, like, a lot of misunderstanding about it. I think you have to work more with … like family and friends around you and prepare them too and ask them to respect what you are about to do.” (Family G, mother).

There was a general awareness among parents regarding the awkwardness their children might feel in social situations, especially at school. It was perceived as likely to be most challenging for those in their early teenage years, referred to as a ‘sensitive age’. Parents suggested additional professional support from a social worker or psychologist to help them provide better support to their children in the face of unexpected psychosocial challenges. However, many parents were focused on the practical aspects and sometimes overlooked the emotional and psychological effects that the diet might have on their children.

“One thing that maybe should be talked about a bit more when you’re doing this, is ‘So what do your friends at school say?’ and so on. If that’s something that he’s thought about. Because I think that he’s forgotten about it now and it wasn’t something we thought about then. We were just doing it and trying … like, to get it to work. So that is maybe something that you need to think about. How, like … yeah, how they deal with it. You just do what you have to do.” (Family J, mother).