Illness perceptions of youths with functional disorders and their parents: An interpretative phenomenological analysis study

Abstract

Background: Functional disorders, defined as disorders with no clear medical explanation, are common and impose a significant burden on youths, their families, healthcare services and society as a whole. Currently, the literature describes resistance among patients and their families towards psychological symptom explanations and treatments. More knowledge about the thoughts and understandings of youths with functional disorders and their parents is needed. The aim of this study was to explore the illness perceptions of youths with severe functional disorders and their parents. Methods: A qualitative interview study using interpretative phenomenological analyses. The study included 11 youths aged 11–15 years with functional disorders and their parents, where interviews were performed at the point of referral from a somatic to a psychiatric treatment setting. Results: Analyses identified three main themes. Themes 1(Ascribing identity to the disorder) and 2 (Monocausal explanations) explore key elements of the participants’ illness perceptions, and theme 3 (Mutable illness perceptions) explores how illness perceptions are influenced by experiences from healthcare encounters. Conclusions: The label ‘functional disorder’ was poorly integrated in the illness perceptions of the youths and their parents. Participants used a monocausal and typically physical explanation rather than a multicausal biopsychosocial explanation for their symptoms.

Feasibility of group-based acceptance and commitment therapy for adolescents (AHEAD) with multiple functional somatic syndromes: a pilot study

“…Known maintaining factors include negative illness perceptions (e.g. single cause attribution of symptom, no sense of control and long expectancy of symptoms) [14][15][16] and maladaptive illness behaviours (e.g. avoidance, control and 'all-or-nothing' behaviour) [17].…”

Systemic family therapy for severe functional disorders in youths: a qualitative study in a psychiatric setting

“…The previous papers from the overall study (Figure 1), conducted at the point of referral, found resistance and scepticism among parents and youths towards SFT (Hulgaard et al, 2019a;Hulgaard et al, 2019b).…”

“…As the study was conducted in a secondary public healthcare setting, the SFT could only be accessed through referral by a paediatric department, and while all of the included families had accepted referral, none of them had actively sought SFT treatment and some families had critical preconceptions of the family therapy format (Hulgaard et al, 2019b).…”

“…Her parents felt very strongly that Mie's symptoms had a physical cause which had not been sufficiently explored, thus they did not agree with a multifactorial explanation. They had only agreed to the referral to SFT in a CAMHS setting because they felt that the healthcare system had left them without any other options (Hulgaard et al, 2019b). Mie's symptoms did not improve during family therapy, and the whole idea of psychotherapy and of engaging in a dialogue about family dynamics and relations as perpetuating factors, did not make sense to the family members.…”

“…The study is part of a larger research project exploring the experiences of youths with severe FD and their parents in the context of transition from a paediatric department to child and adolescent mental health services (CAMHS) (Figure 1). Two previous papers conducted in the same setting, before the commencement of SFT, have focused on the families' perceptions of illness (Hulgaard et al, 2019b), and on parenting experiences, including their attitudes to referral from a somatic to a psychiatric setting (Hulgaard et al, 2019a). Results from Exploring the parental experience of having a child with a functional disorder.…”