A qualitative study of adolescents with medically unexplained symptoms and their parents. Part 1: Experiences and impact on daily life

Abstract

Medically unexplained symptoms (MUS) are common among adolescents and are frequently encountered in primary care. Our aim was to explore how these adolescents and their parents experience the condition and its impact on their daily lives and to provide recommendations for health professionals. Using a qualitative approach, six focus groups and two individual interviews were conducted. These involved a total of ten adolescents with different types of MUS and sixteen parents. The respondents were recruited in a university hospital in Switzerland. A thematic analysis was conducted according to the Grounded Theory. The analysis of the data highlighted four core themes: disbelief, being different, concealing symptoms, and priority to adolescent's health. Transcending these themes was a core issue regarding the discrepancy between the strategies that adolescents and their parents use to cope with the symptoms. Health professionals should be made aware of the emotional needs of these patients and their families.

Topical Review: Basic Psychological Needs in Adolescents with Chronic Pain—A Self-Determination Perspective

“…Indeed, adolescents with chronic pain frequently report difficulties in social functioning [110–113]. They often feel different and misunderstood by their peers, partly because living with pain makes them having to carry more responsibilities than other adolescents of their age [96, 111, 114]. For example, they have to know how to deal with medication or to make conscious choices about their activities in order to avoid potential negative consequences (e.g., more pain, more fatigue) [31].…”

Mindfulness-Based Stress Reduction for Adolescents with Functional Somatic Syndromes: A Pilot Cohort Study

“…1–4 At least 13% of primary care visits are attributable to functional somatic syndromes. 5–7 These syndromes are prevalent, costly, and may be debilitating.…”

‘Fixing my life’: young people’s everyday efforts towards recovery from persistent bodily complaints

“…Notably, even though the young people with MUS may be 'defined by a medical gaze' their efforts of 'fixing' are oriented towards life in general, more specifically life as youth, as other research is beginning to show (e.g. Moulin et al 2015). This then becomes partly a matter of self-care, requiring a 'descent into the ordinary' (Das 2012) in everyday life, as persons more than patients.…”

“…Recent qualitative additions to the literature on MUS in youth have emphasized the meaning of a peer relational and cultural context (e.g. Moulin et al 2015). Youth is a flexible and contestable social category (Bucholtz 2002;Cole and Durham 2007).…”

“…Qualitative studies have begun to explore the perspectives and meaning-making efforts of young patients (e.g. Moulin et al 2015), suggesting peer relations influence needs and coping strategies, but more research is needed to better understand such processes and the meaning of everyday contexts. Here, we refer to persistent bodily complaints as a more open term regarding contexts and explanatory frameworks (Marks and Hunter 2015), to encapsulate possible experiences of the phenomenon in everyday life.…”