‘I can hardly breathe’: Exploring the parental experience of having a child with a functional disorder

Abstract

Functional disorders in children and adolescents are common. Still, little is known about parents’ experience of having a child with a functional disorder. The aim of this qualitative interview study was to explore challenges encountered by parents caring for a child undergoing treatment for functional disorder. Sixteen parents to children with functional disorders were interviewed when their child was referred from a paediatric department for further specialized treatment with family therapy in child and adolescent mental health services. Analysis identified three themes, reflecting the parental experiences: parents in limbo, which described how limited knowledge about functional disorders among professionals in non-specialized settings influenced parental roles; a counterintuitive kind of caring, describing parental struggles with adhering to treatment recommendations for functional disorders; and challenges to parental identity, describing parental emotional challenges. These challenges may bar the acceptance of psychological treatment approaches in families with a child with functional disorders.

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).…”

“…Results from the previous study on the parenting experience (Hulgaard et al, 2019a) (Figure 1) showed how in-family perpetuating factors could evoke parental feelings of guilt or even of being blamed for their child's symptoms. In line with these findings, Kira's parents described feelings of guilt in relation to Kira's symptoms, especially at the point of referral to SFT.…”

“…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.…”

The experiences of adolescents diagnosed with functional gastrointestinal disorders: An interpretative phenomenological analysis

“…The journey to diagnosis: The good, the bad and the unknown Whilst some positive aspects of the journey to diagnosis were cited, including holding hope for a cure and experiencing validation, uncertainty underpinned most narratives and shaped participants' experiences. Such experiences are echoed in the limited literature exploring adolescent and family experiences of functional disorders, including feeling 'in-limbo' within the professional system during diagnostic investigations (Hulgaard et al, 2019). In the absence of certainty, participants created their own understandings of their symptoms as is purported to occur in the model of perceived uncertainty in illness (Mishel, 1988).…”

Mind the gap: integrating physical and mental healthcare for children with functional symptoms

“…On the contrary, if the diagnosis of functional symptoms is made positively and empathically, with an emphasis on psychological treatments being the evidence-based treatment of choice—most families welcome the approach. What families seem to find most distressing is that their clinicians do not have a good knowledge and understanding of functional symptoms and their treatment and this promotes anxiety, lack of trust and poor engagement 6…”