Cognitive behavioural therapy and psycho‐education for chronic fatigue syndrome in young people: Reflections from the families' perspective

Objectives Recent trials have produced optimistic results for family‐focussed cognitive behavioural therapy (CBT) for chronic fatigue syndrome (CFS) in young people. This study sought to examine the under‐researched question of the views and experiences of patients and families who take part. Design Semi‐structured interviews and qualitative analysis were chosen in order to address clients' perspectives in depth. Methods Sixteen young people and sixteen parents who participated in a trial of CBT versus psycho‐education (PE) for CFS were interviewed. Key themes were discerned using inductive thematic analysis. Results Most families had low expectations of a cure but hope for improvement. Generally speaking, participants found both CBT and PE acceptable and helpful. Behavioural aspects of CBT (e.g. goal‐setting, graded activity) were found helpful. The opportunity to gain support, recognition and validation was important. Cognitive elements of therapy were sometimes deemed inappropriate and some felt emotional aspects of CFS were not adequately addressed. Participants were ambivalent towards the extent of family involvement. Negative experiences related to the therapy setting and feeling inappropriately labeled. Most participants felt therapy was a stepping‐stone towards normal life, although many felt recovery was incomplete. Very few differences were found between themes from CBT and PE participants. A notable exception was that every young person who experienced CBT described therapy as helpful, whereas the participants who strongly opposed the therapy approach had all experienced PE. Conclusions The detailed insights regarding families' therapy experiences suggest areas of improvement for service delivery and topics for further investigation.