Living with someone with an eating disorder: factors affecting the caregivers’ burden

Abstract

We focused on carers of subjects suffering from eating disorders (ED), and studied the characteristics that mostly expose them to high levels of stress, anxiety, depression and expressed emotion, favoring the accommodation of the family system to the cared person. We administered the accommodation and enabling scale for eating disorders (AESED) questionnaire, the family questionnaire (FQ) and the depression, anxiety and stress scale (DASS-21) questionnaire to 97 carers of 62 ED patients, and investigated the carer's characteristics associated with the scores in the three questionnaires. A personal history of ED, being the primary carer, and caring for a person with a diagnosis of anorexia nervosa are the characteristics that contribute most to aggravate the carers' burden in terms of stress, anxiety, depression, accommodation and enabling. Our findings may help doctors to provide effective support to caregivers and eventually improve the treatment of subjects with ED.

Effectiveness and influencing factors of online education for caregivers of patients with eating disorders during COVID‐19 pandemic in China

“…Consistent with previous studies during the non‐pandemic period (Stefanini et al, 2019; Zabala et al, 2009), we found that the caregivers of patients with ED suffered more serious depression and anxiety. A systematic review on caregivers of patients also reported high anxiety and depression levels in this population (Anastasiadou, Medina‐Pradas, Sepulveda, & Treasure, 2014).…”

“…But the relationship between social support and negative feelings needs further research. The elevated perceived stress in caregivers of patients with ED shown in this study was also reported in previous studies (Anastasiadou et al, 2014; Stefanini et al, 2019), which might play as a co‐factor with depression and anxiety maintaining the illness of their children or adolescents with ED. Notably, the information we collected was from the primary caregivers, who were reported to suffer more emotional burden (Stefanini et al, 2019).…”

“…The elevated perceived stress in caregivers of patients with ED shown in this study was also reported in previous studies (Anastasiadou et al, 2014; Stefanini et al, 2019), which might play as a co‐factor with depression and anxiety maintaining the illness of their children or adolescents with ED. Notably, the information we collected was from the primary caregivers, who were reported to suffer more emotional burden (Stefanini et al, 2019). During the special period of the COVID‐19 pandemic, the primary caregivers may need more professional interventions to release their psychological burden and enhance their ability to cope with the complex situation.…”

“If she had broken her leg she would not have waited in agony for 9 months”: Caregiver's experiences of eating disorder treatment

“…The subjective burden represents caregivers' psychological distress and perceived quality of life in relation to the objective burden (Raenker et al, 2012). Numerous studies have identified sentiments of guilt, shame, and helplessness associated with caring for a loved one with an ED along with increased rate of anxiety and depression (Fox, Dean, & Whittlesea, 2015; Kyriacou, Treasure, & Schmidt, 2008; Stefanini et al, 2018). Research exploring the caregiving burden has mainly focused on parents with siblings and partners' experiences remaining grossly under‐investigated (Fox et al, 2015).…”

Family accommodation in psychopathology: A synthesized review

“…[858687] Family accommodation is higher in caregivers of patients with a longer duration of the disorder, patients with anorexia nervosa (compared to bulimia nervosa), when the caregiver spends more time with the patient, has a personal history of an eating disorder, and when the caregiver or the patient have high levels of anxiety. [868889] Family accommodation also mediated the relation between objective indicators of burden (i.e., time spent across caregiving tasks) and subjective perception of burden (caregivers’ distress) in mothers of patients with anorexia nervosa. [90]…”