Family members are often tasked with the significant responsibility of supporting their children with their eating disorder (ED) recovery [1]. Rhind et al. [2] found the average time spent by mothers providing food-related and emotional support was 2.5 hours per day, highlighting the objective burden of caring for a child with an ED. The negative subjective burden caring for a young person with an ED can have is also consistently reported, including poor self-reported quality of life and an increased risk of developing a mental health problem amongst carers [3, 4].
Family accommodation refers to changes that a family member makes to their own behaviour to avoid or alleviate the distress experienced by a relative with a mental health difficulty [5]. It has been identified as a key maintaining process of EDs; despite the intent being to alleviate familial conflict and burden, the immediate reduction in distress fuels a cycle of negative reinforcement. This results in increased accommodation and often more severe symptoms as independent coping strategies are not developed [6]. Family accommodation is highly prevalent across anxiety disorders: it has been consistently reported that up to 90% of relatives of both adults and children with Obsessive Compulsive Disorder (OCD) display accommodating behaviours [5] and amongst children with anxiety disorders this increases to over 97% [7]. Family accommodation remains most well-studied amongst OCD, however, the extent to which the behaviours exist amongst caregivers of those with EDs remains less well-understood [8]. Whilst prevalence rates have not yet been established for this population, clinical evidence suggests it is commonplace [9].
The cognitive-interpersonal model of anorexia nervosa [10] argues family accommodation contributes further to disruptions in family functioning [11], allowing symptoms to persist, hindering weight restoration and recovery [12]. Additionally, the accommodating role gives rise to high levels of carer frustration [13], often resulting in higher levels of expressed emotion that can intensify family conflict further and negatively impact treatment outcomes [14]. Research has found that when met with their loved one’s resistance to treatment, caregivers often feel powerless over the illness and increase their accommodating behaviours, despite recognising that such behaviours are counterproductive [15]. Levels of family accommodation have been found to be higher in caregivers of patients with a longer illness duration, patients with anorexia nervosa (AN) as compared to bulimia nervosa (BN), patients and/or caregivers with higher levels of anxiety, and if the caregiver has a personal history of an ED [9, 16, 17]. Early evidence also suggests familial accommodation of ED behaviours is associated with poorer treatment outcomes [11], with symptom severity highest when both parents are highly accommodating [12]. The negative impact of EDs on caregivers is indisputable and research has started to facilitate our understanding of the factors associated with higher levels of burden. This includes those who are the primary carer, carers who have a personal history of eating difficulties, and those caring for someone with AN [16]. Importantly, the relationship between objective burden (time spent caring) and subjective levels of carer distress in mothers has been found to be mediated by the level of accommodating behaviours exhibited [2].
Distress tolerance has been defined as one’s capacity to experience and endure negative psychological states with regard to their aversiveness, appraisal, acceptability, and tendency to disrupt functioning and regulation of emotions [18]. It is a multi-component construct composed of global intolerance and five domain-specific dimensions: tolerance of uncertainty (IU), tolerance of ambiguity, tolerance of frustration, tolerance of negative emotions (TNE), and tolerance of physical discomfort [19]. Disordered eating has been conceptualised as a maladaptive response to managing distress [20] and it has been established that individuals with clinical EDs have difficulties in regulating their emotional states and demonstrate higher levels of affect avoidance [21]. Initial qualitative research has found that young people with a restrictive ED tend to view uncertainty as negative and their illness plays a functional role in reducing this, as engaging in ED behaviours provides a sense of security and control [22].
Compared to the research into caregiver distress and distress tolerance in different client groups, research on distress tolerance in carers is scarce. One initial qualitative study described how excessive parental uncertainty associated with the illness contributed to family disruption and negatively impacted self-efficacy in their parenting skills [23]. It has been hypothesised that accommodation may be a primary coping strategy for parents with poor distress tolerance as such behaviours can avoid or quickly alleviate their child’s, and therefore their own, distress [24]. However, to the researchers’ best knowledge, there are no published peer-reviewed papers on distress tolerance in carers of those with an ED.
Given the timing and context of this research, the impact of the context of the COVID-19 pandemic must be appreciated. Initial research has shown the negative impact of the pandemic on eating disorders, highlighted by the doubling of referrals to NHS child and young people’s ED services since March 2020 [25]. This potentially provides further evidence for the hypothesis that IU underlies the anxiety and cognitive rigidity characteristic of many eating disorder presentations [26]. The pandemic introduced a worldwide period of uncertainty which, according to a qualitative analysis of an online multi-family group in the UK, increased burden on carers of those with EDs [27].
Despite clinical evidence suggesting family accommodation is common in eating disorders, and this has started to be associated with illness outcomes, it is not yet well understood why some families exhibit more accommodating behaviours. The identification of any factors related to family accommodation could inform the development of family-based interventions to ensure these are addressed to support both the young person with the illness and the family members looking after them. As the goal of accommodation is to reduce distress or conflict in the short term, it can be hypothesised this is motivated by low levels of distress tolerance in the carer. This study therefore aimed to investigate the relationship between parental distress tolerance (specifically TNE and IU) and family accommodation and assess the role of illness severity, caregiver burden, and parents’ mental health on this potential association. Given the timing and context in which this research took place, the secondary aim was to understand whether and how parents felt the pandemic influenced their management of their child’s ED.