Helping Parents Who Are Caregivers for AN Patients

Parents are the most frequent long-term caregivers for patients with AN, yet few studies have examined the burden of emotional distress parents may have, along with underlying and unaddressed grief. To learn more about parental stress and grief, Dr. Jeanne Duclos of the Department of Psychiatry at the University of Lille, France, and a team of French researchers studied the role of burden among parents of AN patients (Eat Weight Disord—Studies on Anorexia, Bulimia and Obesity. 2023. 28:16),

In their recent study of 80 mothers, 55 fathers, and their adolescent children with AN (n=84), the authors sought to explore parents’ and adolescents’ characteristics that may be related to parental burden and grief in AN, and to identify links between the two. Before inclusion in the Evaluation of Hospitalization for Anorexia Nervosa (EVHAN) study, all participants had been hospitalized for an acute AN episode in a specialized French treatment center for life-threatening physical and/or mental conditions related to AN. Inclusion criteria included patients aged between 13 and 21 years who were living with their parents before they were admitted for treatment. Those who had a potentially serious underlying disease, such as diabetes, Crohn’s disease or other metabolic diseases, were excluded.

Along with sociodemographic and clinical data, parental grief was assessed with the Mental Illness Version of The Texas Revised Inventory of Grief (MIV-TIG) (39). This inventory is ordinarily used to assess grief at the death of a loved one. In this case, it was modified to assess grief because of a relative’s mental illness, instead of death, and the loss of that person as she/he was before developing mental illness.

Burden and emotional drama

Most of the patients (94%) were girls, and the mean age was 16 years. One-fourth of the sample was enrolled in primary school; 36% were in secondary school, 7% in higher education, and data were missing for 31. A few were adopted and nearly 29% had parents who were separated. Nearly half had one sibling, 31% had 2, and 13% were only children. The mean sample had had AN for nearly 2 years, a body mass index, or BMI (mg/kg²) of 14.3 on admission and a minimum lifetime BMI of 13.61.

More than half of the adolescents met the criteria for restrictive AN; the rest met criteria for purging-type AN. According to the results of the French study, parents can suffer from feelings of burden with emotional distress, along with high levels of depression and anxiety. Parents caring for a patient with AN may describe a sense of “living loss” and grief. Some may feel that they have lost their child’s former self, along with their relationship with him or her, and their hopes for the future are disrupted. These feelings are particularly strong in the case of AN, where this life-threatening disease may make it difficult to be supportive to their child or to fully engage with normal life. Caregiver burden has two parts: the first is disruption of family/household life due to the patient’s illness; subjective burden is subjective distress among family members.

Helpful steps that can be taken

The grief process in adolescent AN is particularly challenging and complex. The first step involves letting go of the adolescent as she/he was before the illness and of one’s relationship with the “old” person of one’s former dreams and expectations. Next, the caregiver or caregivers have to find a way to live with and accept the person as he or she is now. The authors found that one particularly painful task for parents of adolescents with long and enduring AN is accepting the irreversible loss of their child’s normal adolescence. And, they must also work on who their child may be in the future. Parents need to know that 50% to 60% of adolescents with AN will eventually improve or fully recover. Addressing parents’ intolerance of uncertainly may be very helpful at this stage of loss and grief work. “Negative uncertainty” can contribute to feelings of distress and uncertainty and undermines self-confidence and self-efficacy.

It is essential to help parents with their emotional distress. While fathers need specific help in decreasing their levels of anxiety, mothers need to be given priority, paying attention to interrelated parental experiences. Fathers’ attendance in family-oriented treatment is generally poor and tends to decrease over time (J Clin Child & Adolesc Psychol. 2018. 47: S56). The authors point out that society and therapists often tend to accept the fact that fathers will be absent from family therapy over time and thus reinforce their absence, conveying to mothers that they are the main agent for change and perhaps the guilty one to start with. This merely increases the mothers’ burden. It is possible to work on such cycles without blaming one or the other parent. Fathers do play an important role in their adolescent’s recovery, including ways in which their attendance in therapy is associated with improved treatment outcomes (Clin Soc Work J. 48:389). Both parents expressed more grief when their child’s clinical state was more severe. The fathers’ grief was related to their own levels of depression and anxiety, while mothers’ grief was associated with their own levels of depression and alexithymia. The authors’ results: mothers might be more affected by their child’s clinical condition than by their own psychological condition, whereas fathers feel a higher burden related to their own anxiety. The burden was explained by grief in both parents, by anxiety in the fathers and by the child’s worsening clinical state in the mother’s grief.

The authors did point to several limitations of the study. One was that the study was conducted purely in an inpatient setting, which may have biased the sample toward a more severe eating disorder population. Parents of hospitalized adolescents, who could not be managed on an outpatient basis or managed it at home with little or no additional professional help, may have felt a more acute sense of distress and failure than parents who were outpatient caregivers.

They also call for larger samples of patients with both restrictive and purging AN. Larger samples are needed and may promote development and use of specific loss and grief programs for this clinical population. As a result of their study, the authors themselves were encouraged to include some components or parts of the non-death loss and grief-oriented theories in their multifamily therapy and parent group programs for adolescent AN.