A qualitative study of adolescents with medically unexplained symptoms and their parents. Part 2: How is healthcare perceived?

Abstract

Medically unexplained symptoms (MUS) are common among adolescents and an important cause of clinical visits. This study sought to understand the experiences with, and perceptions of, the healthcare of adolescents who have MUS and their parents. Using a qualitative approach, six focus groups and two individual interviews were conducted with a total of ten adolescents and sixteen parents. The participants were recruited in a university hospital in Switzerland. A thematic analysis was conducted in accordance with the Grounded Theory. Six main themes emerged: needing a label for the symptoms, seeking an etiology to explain the symptoms, negotiating the medical system, medication and treatments, interactions with doctors, and the inclusion of parents during consultations. Transcending these themes, however, was the need for good communication between the adolescents, their parents and the clinicians. When explaining the symptoms, clinicians should make sure to discuss the results, investigations and lack of organic origin.

Diagnostic Uncertainty in Youth With Chronic Pain and Their Parents

“…4,18 In a qualitative study of children with medically unexplained symptoms, children and their parents expressed struggling to accept a lack of a credible diagnosis and needing an explanation for their symptoms. 25 Moreover, most children reported not feeling understood, believed, or listened to by physicians. 25 Although validation has not been shown to lead to decreases in pain, invalidation during a pain tolerance task with healthy adults has been linked to a decrease in positive affect and increased worry.…”

“…25 Moreover, most children reported not feeling understood, believed, or listened to by physicians. 25 Although validation has not been shown to lead to decreases in pain, invalidation during a pain tolerance task with healthy adults has been linked to a decrease in positive affect and increased worry. 19 Future research is needed to examine the impact of validation on other components of pain (eg, disability) and in chronic pain populations.…”

Adolescent and Parent Experiences of Acceptance and Commitment Therapy for Pediatric Chronic Pain: An Interpretative Phenomenological Analysis

“…Experiences from communication and interaction with others emerged as a key theme in the present study. These experiences are not unique to ACT, and research points to the specific relevance of these factors in the context of medically unexplained symptoms [62] and chronic pain [63]. The importance of pain communication has received increased attention in recent years.…”

‘Not a film about my slackness’: Making sense of medically unexplained illness in youth using collaborative visual methods

“…Recurring debilitating symptoms may have a profound effect on young people's lives and the transitional and developmental tasks they are facing, leaving them unable to attend school, take part in physical activities or function socially (McWilliams et al, 2016;Moulin et al, 2015a). While most research on MUS has focused on aetiology, qualitative studies have contributed to our understanding of the consequences, experiences and efforts of meaning making from adolescents' own perspective (Karterud et al, 2016;Kornelsen et al, 2016;Moulin et al, 2015aMoulin et al, , 2015b. The challenges for young people experiencing MUS are different from those faced by adults.…”