“We don’t really know what else we can do”: Parent experiences when adolescent distress persists after the Maudsley and family-based therapies for anorexia nervosa

Abstract

BackgroundMaudsley Family Therapy (MFT), and its manualised version, Family-Based Therapy (FBT), are the only well-established treatment interventions for adolescent anorexia nervosa (AN), with treatment efficacy primarily measured by improvements in eating behaviours and weight restoration. A crucial component of this therapy is an intensive home-based refeeding intervention that requires a substantial commitment from parents for up to one year. While this treatment works to restore weight in a proportion of adolescents, very little is known about its impacts on family distress, relationships and identity, including in the 40% of families where the adolescent experiences ongoing eating disorder (ED) symptomatology and/or psychological distress during and post-treatment. Specifically, few studies have investigated the impacts of MFT/FBT treatment on family functioning or on how parents negotiate their identities, or who they understand themselves to be, in the context of this treatment intervention. This is a significant omission, given the substantive role assigned to parents to take responsibility for their child’s eating restoration in the first treatment phase. This study seeks to address this gap through a qualitative exploration of parents’ experiences of MFT/FBT, in cases where treatment was discontinued and/or their child continued to experience psychological distress post-treatment.Methods13 parents participated in in-depth semi-structured interviews that scaffolded between their experiences and ways they negotiated and sustained their identities as parents within the context of MFT/FBT for their child. Interview data was analysed through a framework of critical discursive analysis to generate themes centred on these parents’ experiences and identity negotiation.ResultsKey findings are that MFT/FBT: (1) provided a map for therapy that initially relieved parents’ anxieties for their child and facilitated improvements in family functioning; (2) inadequately addressed parental guilt and blame with a form of externalisation of the illness; (3) perpetuated parental guilt by raising anxiety about AN and allocating responsibility for refeeding their child in phase 1 of the treatment; and (4) when ceased, left these parents struggling with an uncertain future, and fears for the wellbeing of their children.ConclusionsThe structure of MFT/FBT provided initial relief with some improvements in family communication patterns, however, when the adolescent experienced protracted ED symptoms and/or ongoing psychological distress post-treatment, these parents were left with uncertainty as to how to navigate their shifting roles and their child’s ongoing struggles. This research highlights the need for treatments for adolescent AN that more comprehensively address both the adolescent and parents’ psychological distress and also (re)build their senses of identity that have been challenged by AN and its effects.

Toward A Greater Understanding of the Ways Family-Based Treatment Addresses the Full Range of Psychopathology of Adolescent Anorexia Nervosa

“…The view that manualized family-based treatment (FBT) is solely a behavioral therapy directing parents to refeed their children with anorexia nervosa (AN) with the single goal of weight gain is a common but misleading over simplification of the therapy (1). Reports suggest that therapists implementing FBT are concerned with the lack of specific interventions in the approach to address issues such as psychiatric comorbidity, perceived family dysfunction, and broader adolescent development and functioning (2)(3)(4)(5). While there is deliberate focus on weight and eating normalization, FBT aims more broadly at promoting adolescent development without AN thoughts and behaviors interfering and disrupting these processes.…”

A Critical Review of Studies Assessing Interpretation Bias Towards Social Stimuli in People With Eating Disorders and the Development and Pilot Testing of Novel Stimuli for a Cognitive Bias Modification Training

“…This therapy aims to improve nutrition and mostly focuses on providing information and support to carers to feed their children (Le Grange and Eisler, 2009;Lock and Le Grange, 2019). Whilst this is the most effective treatment available according to the current evidence base, approximately 20% patients offered Family Based Treatment drop-out (Dejong et al, 2012), between 33% and 42% reach remission by the end of treatment (Lock et al, 2010;Agras et al, 2014), and 40% of patients struggle with significant ongoing psychological distress after treatment (Lock et al, 2006;Wufong et al, 2019). CBM could provide a useful 'treatment enhancer' by increasing sensitivity to positive social feedback and reducing sensitivity to social criticism from family and peers, and the online nature of the training may appeal to the younger population.…”

Treatment resistance in eating disorders: a question of uncertain targets or insufficient personalization?

“…An example of a missing piece of the evidence-based practice puzzle has been added in the form of two new papers describing feedback from patients and carers about treatment for adolescents with anorexia nervosa (Mitrofan et al, 2019), specifically family-based therapy (FBT) (Wufong, Rhodes, & Conti, 2019). The feedback from carers questions the practice of allocating responsibility for re-feeding and weight restoration to parents within an adversarial framework in which parents are empowered to do battle with an externalized eating disorder, which can leave those families who 'fail' in this task dispirited and guilty.…”