Scoliosis is the most common spinal disorder in adolescents and more than 85% of people affected by this condition will also live with low back pain. During teenage years, girls are more likely to develop scoliosis than boys and are also more likely to require surgery than boys. Researchers were interested in exploring how peer support groups can help improve the quality of life for adolescent girls living with this condition.
Goal
To slow down the progression of scoliosis, a non-surgical approach of bracing is often used. The patient will wear a corset-like orthotic device for most of the day, which not only is effective in slowing down the development of spinal curvature, but unfortunately was also associated with other adverse effects such as chronic pain. To learn how to better manage and cope with pain and their conditions as well as decreasing social isolation, it was shown in the literature that people living with chronic pain can benefit from joining peer support groups. Richard Hovey and his research team aimed to explore the role and ways in which peer support groups can help prevent people from socially isolating.
MethodologY
Curvy Girls® is a well-known peer support group that aims at connecting girls living with scoliosis with each other through social media or local groups. The researchers collaborated with this group to recruit girls living with scoliosis who would agree to answer a few open-ended questions in a semi-structured interview. Such questions like ‘Could you tell me the story of your scoliosis diagnosis?’ can generate rich data by inviting the participants to direct the conversation to any aspect of the question that is the most relevant to them.
Main findings
To interpret the data, researchers were guided by the research topic, rather by a strict research method. In other words, applied philosophical hermeneutics was used to reflect on the whole issue rather than separate parts of it, and then back to the parts. Three main topics were highlighted by the participants:
Dismissal: Participants reported that loved ones and healthcare professionals diminish the legitimacy of their health concerns, leading to questioning their own perceptions and experiences. Pain was dismissed and denied.
Sens of belonging: Peer support fulfilled a need that parental support alone could not and allowed to normalize the experience of their condition.
Advocacy: In line with one of the goals of Curvy Girls®, a lot of participants felt like they were ‘better advocates for things they believed in’, formulate clearer questions and gain confidence in advocating for themselves and other people.
Take home message
Adolescent girls living with scoliosis experience limited opportunities to discuss negative encounters with healthcare that include pain dismissal and testimonial injustice which may lead to negative mental and physical health outcomes. Curvy Girls® disrupts this trajectory by creating physical and virtual spaces that cater to its members’ needs for acceptance and belonging.
Learn more about Curvy Girls® peer support groups: https://cihr-irsc.gc.ca/e/51373.html
