Participation of long haulers in matters of children and adolescents with Long COVID

The research on Long COVID in children and adolescents is moving forward in leaps and bounds. However, in practice, there is often lack of understanding, knowledge, and acceptance of Long COVID as a clinical pattern, which can lead to inadequate care to the affected children and adolescents. At the same time, there are already important insights and information on the treatment, but they do not always reach all the long haulers.

Through a participation process, the Federal Ministry of Health would like to promote the patients, their relatives as well as staff with professional points of contact with the patients being able to contribute their experiences and needs. In the BMG’s view, participation measures can be important contributors to improve the care for children and adolescents with Long COVID because the needs of long haulers can be recognised more accurately and considered in future activities. The central aim of participation in “Long COVID in children and adolescents” is to create more clarity on the care and support needs and identify the potential improvement measures. 

The participation format consists of multiple parts building on each other: From October 2024, there were online survey and qualitative interviews with long haulers initially in the first phase. Then, three participation workshops were conducted in November 2024.

The participants included children and adolescents who have or had Long COVID, and their relatives. Apart from them, healthcare professionals, therapists, nursing staff as well as people from the world of the patients (for example nursery schools, schools, clubs) also took part. 

In order to enable maximum participation – especially even for the patients and their relatives – various participation options were offered including phone interviews, online sessions, and regional in-person workshops. The participation project and survey as well as evaluation of the participation format were implemented by service providers experienced in this area on behalf of the BMG. In addition, an expert for Long COVID in children and adolescents provided the scientific support for the project. 

The results of the online survey were deepened in explorative individual interviews. Their aim was to obtain further insights in the hitherto expressed experiences and attitudes. The 50 individual interviews were conducted online in November 2024 with the affected adolescents and/or a parent, medical staff, therapy staff, and pedagogical staff.

The interviews especially highlighted the interferences in the life of the patients and their relatives, treatment experiences as well as knowledge on Long COVID in children and adolescents. The focal points in the answers appeared to be in four central fields of activity: 

1. Diagnosis, therapy and treatment,

2. School, education, profession,

3. Nursing care at home and family life, and

4. Leisure, activities, and social contacts. 

The insights from the online survey and qualitative interviews ultimately formed the basis for content for the participation workshops. The expectations and desired topics of the respondents also entered in the conception of the workshops. For preparation, the participants were additionally provided an info sheet with the results of the first phase. 

The second phase of the participation process started on 23rd November 2024 with an online workshop attended by 40 people. The objective was to infer the needs from the experiences of long haulers and develop possible solutions in a joint exchange of views. The so-called Persona Method was used to identify the suggestions that can really help the patients. This method enables a concrete exchange of views about the needs of patients, taking into account the socio-demographic, medical, and psychological variety of the target audience.

For this purpose, discussions were held in small groups consisting of patients, relatives, and staff on the challenges they had, the information and care services that would have helped in the previously identified fields of activity, and the measures that could contribute to any improvement. The results were recorded on digital white boards and then presented in plenum.

Another participation workshop took place in a condensed form as a part of the Long COVID Congress on 25th November 2024 in Berlin with around 15 participants. The workshop had a discussion on the challenges in “Diagnosis, Therapy, Treatment” and debated the various possibilities for improvement in the situation of the long haulers.

The final phase of the participation format shall be initiated on 15th February 2025 with a digital compilation workshop, in which the participants from the previous process steps shall participate. Concrete courses of action shall be derived and formulated here from the pre-processed results of Phases 1 and 2. The courses of action shall be submitted to the BMG in Berlin on 7th March 2025 by the ambassadors, who participated in the participation format.