"AIJTeens provides advice and psychological support through WhatsApp and Instagram to teenagers with juvenile idiopathic arthritis"

 

Imma Beneitez, a recent graduate of one of the Universitat Oberta de Catalunya's (UOC) doctoral programmes, has developed an online psychoeducational intervention specifically for young people with juvenile idiopathic arthritis (JIA) called AIJTeens. As a health psychologist, Beneitez has worked in a number of hospitals and psychological care centres. She has also taken part in the UOC's research project DARWeb, which is working to provide an online resource for children with recurrent abdominal pain.

JIA is a paediatric rheumatic disease whose main symptoms are persistent joint pain and stiffness. Although its cause is unknown, it can interfere with a number of physical functions, such as practising sports, and may also have a psychosocial impact (affecting patients' social relationships or self-esteem). Treatment of JIA requires a multidisciplinary approach, including both pharmacological and non-pharmacological interventions. The latter group includes psychosocial interventions carried out by psychologists.

We talked with Dr Beneitez to find out more about JIA and how psychology can contribute to treating this condition through the use of online psychosocial interventions. This proposal was the subject of her doctoral thesis, co-supervised by eHealth Center researchers Eulàlia Hernández and Rubén Nieto.

 

 

Imma Beneitez, a recent graduate of one of the Universitat Oberta de Catalunya's (UOC) doctoral programmes, has developed an online psychoeducational intervention specifically for young people with juvenile idiopathic arthritis (JIA) called AIJTeens. As a health psychologist, Beneitez has worked in a number of hospitals and psychological care centres. She has also taken part in the UOC's research project DARWeb, which is working to provide an online resource for children with recurrent abdominal pain.

JIA is a paediatric rheumatic disease whose main symptoms are persistent joint pain and stiffness. Although its cause is unknown, it can interfere with a number of physical functions, such as practising sports, and may also have a psychosocial impact (affecting patients' social relationships or self-esteem). Treatment of JIA requires a multidisciplinary approach, including both pharmacological and non-pharmacological interventions. The latter group includes psychosocial interventions carried out by psychologists.

We talked with Dr Beneitez to find out more about JIA and how psychology can contribute to treating this condition through the use of online psychosocial interventions. This proposal was the subject of her doctoral thesis, co-supervised by eHealth Center researchers Eulàlia Hernández and Rubén Nieto.

 

Before starting my doctoral programme at the UOC, I was already working there as a research assistant and I applied for the doctoral studies grant, which I was fortunate enough to be awarded.

Psychosocial interventions targeting children and teenagers with JIA mainly focus on providing them with specific strategies such as self-regulating the perception of pain, stress management and self-control, and improving physical activity.

These children and teenagers often have physical limitations that restrict their social contacts; they are often away from school and unable to take part in after-school activities or spend time with their circle of friends. The symptoms caused by the disease, such as inflammation and pain, are invisible and unpredictable, and there is also the mistaken perception that arthritis is something that only affects old people. All of this can lead to difficulties in their self-concept (the perception they have about themselves) or their social relations (they may feel different, or find themselves in situations where people do not believe them or judge them). These cases may also require psychological interventions aimed at developing social skills or facilitating social support.

AIJTeens is an online psychoeducational resource intended for teenagers with JIA that provides information and strategies to help them manage their pain and maintain friendships. It also offers the possibility of interacting with other young people suffering from JIA through a mentoring process. It includes the use of breathing, relaxation, concentration and visualization techniques, problem-solving, assertiveness and social skills. In addition, during the mentoring processes, modelling and reinforcement techniques are put into practice.

The AIJTeens intervention uses Instagram (photos with messages and videos) and WhatsApp (mentoring), covering five areas in weekly posts: basic information about JIA; acknowledgement of personal values and goals; training in relaxation and problem-solving; training in concentration and distraction techniques; when and how to talk about JIA and, lastly, friendships.

We chose teenagers aged 11 to 18 for two reasons: the level of maturity they have attained and the importance that having friends holds for teenagers. During this stage of life, teenagers develop cognitive skills that are conducive to introspection, which makes it easier for them to talk about their perceptions and experiences in an in-depth interview. However, children have not yet reached that stage of maturity. Furthermore, during early adolescence, teenagers start to move away from the family group, with peers and friends becoming more important. It's a crucial period for developing social skills.

Teenagers are used to the internet environment and use it to find information related with aspects of their health. Research indicates that 73% of teenagers log on to the internet every day and 45% habitually meet online. In the specific case of young people with JIA, the paediatric rheumatologist, van Pelt, and a team of researchers showed that 72% had looked for information on the internet about rheumatic diseases and 25% said that they had visited a group help forum. Internet is a useful platform for creating online intervention programmes with the same objectives and content as a face-to-face programme, but with the added advantages offered by the online environment.

The online environment offers improved access and convenience. Users can access the interventions from anywhere and, often, at the times that are most convenient to them, without having to travel. There is also the added advantage of not having to be away from school or miss after-school activities. There are studies that suggest that online interventions in general have a high level of acceptance among users and the results can be equivalent to those obtained in face-to-face interventions.

During the first part of the research, we focused on analysing the friendships made by teenagers with JIA (what effect the pain had, the challenges they faced and the mechanisms they used to cope with them). We also explored their perception of the creation of an online resource and their preferences (as regards format and content), using interviews and a focus group. The results showed that teenagers favoured use of an online resource, and that they would like it to provide information and the possibility of interacting with other people who were also experiencing the disease. They also liked the idea of implementing it through Instagram and WhatsApp. The AIJTeens intervention was designed and created on the basis of these results and then implemented in the second part of the research.

The research was presented to several rheumatology departments and patients' associations. Many of them cooperated with us in informing about the intervention and recruiting participants in the first part of the research and also in the intervention's pilot study.

The research did not record information about the families' perceptions. However, one of the future research lines is to include the teenagers' families in the intervention's design and implementation and gain more insight into this aspect.

It would be necessary to adapt the intervention's content and use, for example, using language that is appropriate for each age group. We would also need to consider making the implementation time more flexible and determine which platform is most suitable, considering the participants' age. Specifically, it would be interesting to focus on recently diagnosed children and analyse whether they can benefit more from this intervention compared with children who have lived with the diagnosis for some time.

Yes, AIJTeens could be transposed easily to other paediatric diseases that are associated with pain and a degree of psychosocial impact; the challenges that teenagers with JIA must cope with can be easily generalized to other chronic diseases.

I would recommend that they give themselves time. Preparing a doctoral thesis is a lengthy learning process that goes beyond the strictly academic sphere.