Navigation auf uzh.ch
Navigation auf uzh.ch
Chronic pain is a prevalent condition in childhood and adolescence, it affects between 20-25% of individuals. Pain that lasts or recurs for three months or more can have many negative consequences on patients’ lives, including on their school performance, sleep quality, social life, sports, and general quality of life. To best support children and adolescents with chronic pain, it is important that new research result are being communicated to patients, families, and health care professionals quickly and in a graspable manner.
In the past, children and adolescents have often been overlooked when scientists defined new research questions. This needs to change, as patients themselves know best which questions are most relevant to them. Research should support children and adolescents in (1) better understanding their own condition; and (2) successfully communicating with their environment, such as with their friends, teachers, and coaches.
This project aims to develop a research agenda that is entirely based on the expertise of adolescents with chronic pain, and that relates to (1) questions around the dissemination of research results, and (2) adolescents’ communication with their environment about their pain condition. Currently, research agenda setting is almost exclusively based on the interests of researchers, universities, and funding agencies, thereby ignoring the unique perspective of those affected by the condition under study. Our project intends to change that by asking adolescents with chronic pain about their needs and questions. This will benefit adolescents with chronic pain by ensuring that their own research questions are represented and taken seriously.
The project is based on a series of focus groups with adolescents with chronic pain, co-led by two research group members who themselves have lived experience with chronic pain. An additional focus groups with parents will be led by two other researcher group members. The focus groups will meet several times to discuss the following questions: (1) What do you need to know about chronic pain to best cope with it? (2) What should your environment (parents, friends, healthcare professionals, teachers, etc.) know about chronic pain in order to best support you?
The focus groups will be audio taped, transcribed, and analyzed by means of content analysis. A research agenda will be compiled based on the results of the focus groups. This research agenda will then again be presented to the focus groups to ensure its completeness and accuracy. Finally, the members of the focus groups will discuss with the research team how they could best collaborate on follow-up research projects that should tackle the questions specified in the research agenda.
Adolescents aged 12 years and older who live with chronic pain can participate in the focus groups. Additionally, parents of an adolescent with chronic pain can participate in the relative focus group. Participants are absolutely crucial for the success of the project, as they develop their own set of questions that are then summarized in the research agenda.
All data will be anonymized, meaning that it will not be possible to identify participants based on their statements. The results will be shared via associations and patient groups, published in scientific and public journals, and communicated via congresses and workshops. Other dissemination strategies will be decided upon in the focus groups.
