Chronic fatigue syndrome/myalgic encephalomyelitis in children aged 5 to 11 years: A qualitative study

Abstract

Treatments for paediatric chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) have not been designed or evaluated for younger children (5–11-years). The development of a complex intervention for this population requires an in-depth understanding of the perspectives and psychosocial context of children and families. Children with CFS/ME (5–11-years) and their families were recruited from a specialist CFS/ME service, and interviewed using semi-structured topic guides. Data were analysed thematically. Twenty-two participants were interviewed; eight parents, two children (aged nine and ten) and six parent-child dyads (aged 5–11-years). Theme 1: CFS/ME in younger children is complex and disabling. Theme 2: Children aged eight and over (in comparison to those under eight) were more able to describe their illness, engage in clinical consultation, understand diagnosis and self-manage. Theme 3: Parents of children under eight took full responsibility for their child’s treatment. As children got older, this increasingly became a joint effort between the parent and child. Parents felt unsupported in their caring role. Clinicians should consider different treatment approaches for children under eight, focusing on: parent-only clinical sessions, training parents to deliver treatment, and increasing support for parents. Children over eight may benefit from tools to help them understand diagnosis, treatment and aids for self-management.

Impact of Long Covid on the school experiences of children and young people: a qualitative study

“…These negative emotions were compounded by not knowing how long this 'break from normality' and uncertain trajectory would continue, as has been reported for CYP with CFS/ ME, juvenile idiopathic arthritis and other long-term conditions. 24 35 36 Echoing the 'ripple effect' of CFS/ME on CYP's social, emotional and academic functioning, 25 our findings demonstrate the impact of LC on CYP's participation in many aspects of school life, highlighting their distress about their inability to fully reintegrate with peers in the way they had hoped. As CYP placed a high value on education and often prioritised school (and rest) over all other aspects of their lives, there is a need to find ways of helping CYP with LC and other long-term conditions to minimise school demands so that they can also participate in other aspects of their lives.…”

“…For CYP with CFS/ME, disrupted schooling 'has a significant impact on the self (resulting) in a shift from a perceived normal trajectory of academic achievement and independence to one that is uncertain' (p.10), 24 and some educational support and adaptations underpinned by evidence-based awarenessraising in schools have been recommended. [25][26][27][28]…”