Helping Parents Act as Caregivers

The burden was hardest for mothers of patients with AN

Parents are the most frequent long-term caregivers for people with AN, yet few studies have examined the burden of emotional distress such 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. 2023. 28:16).

In their recent examination of 80 mothers, 55 fathers, and their adolescent children with AN (n= 84), the authors sought to explore parental 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. The study group included people between 13 and 21 years of age who were living with their parents before they were admitted for AN treatment. Those who had another potentially serious underlying disease, such as diabetes, Crohn’s disease, or other metabolic diseases, were excluded from the study.

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.

Emotional distress for parents

Most participants (94%) were girls, and the mean age was 16. 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 girls had been adopted, and some 29% had parents who were separated. Nearly half had one sibling, 31% had two, and 13% were only children. The mean sample had AN for nearly 2 years, a body mass index, or BMI (kg/m2), 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 the 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 elevated 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 become 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; the second is subjective distress among family members.

Helpful steps for parents

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, after the diagnosis they have to think about and work on who their child may be in the future. Parents also need to know that 50% to 60% of adolescents with AN will eventually improve or fully recover. Addressing parents’ intolerance of uncertainty may be 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.

The authors note that 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 during the treatment sessions, 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 agents for change and perhaps the guilty ones to start with. This merely increases the mothers’ burden.

They point out that it is possible to work on such cycles without blaming either of the parents. Fathers do play a key 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 express more grief when their child’s clinical state is more severe. In studies, 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 concluded that 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 mothers’ experience of the child’s worsening clinical state.

Limitations to the study

The authors listed several limitations of their 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.

Dr. Duclos and colleagues report that future studies would benefit from larger samples of patients with both restrictive and purging AN, 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 patients.

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