Parents’ Grief During Caregiving

Parents are often longtime caregivers for their children and teens with AN. In a recent study, parents with adolescents who have AN showed high levels of burden, emotional distress and grief (Eat Weight Disord. 2023. 28:16). The current study is part of a larger longitudinal muti-center study, EVHAN (Evaluation of Hospitalization for AN).

Dr. Jeanne Duclos, of the University of Lille, France, and her colleagues designed their study to examine parents’ and adolescents’ characteristics related to parental burden and grief in AN, and links between the two. They noted that only one other study had examined the grief that parents feel during caregiving (Curr Psychiatry Rev. 2008. 4:162). And, even evidence-based programs such as Parent-Focused Treatment (Lock and Grange. 2013. Treatment Manual for anorexia nervosa: a family-based approach, 2nd ed. Guilford Press) do not address parents’ experience of loss and grief during caregiving for their child with AN.

A study beginning with admission to inpatient therapy

The authors’ study included 80 mothers, 55 fathers, and 84 adolescents hospitalized for AN. All data from the parents and their child were collected during the first 2 weeks after the adolescent was admitted for inpatient treatment. The experience of caregiving burden was assessed with the Experience Caregiving Inventory, and grief was assessed with the Mental Illness version of the Texas Revised Inventory of Grief. This questionnaire, used to study grief reactions to the death of a loved one, was modified to study grief as a part of a relative’s mental illness and the “loss of that person as he or she was before the development of the illness.”

The study collected information about the teen with AN, including gender, age, family composition, and educational and/or professional levels of the family. All patients had DSM-5 diagnoses of AN. The onset of AN, AN subtype, and body mass index (BMI; kg/m²) less than the 10th percentile up to 17 years of age and less than 17.5 for patients 17 years of age and older. The researchers also used the Eating Disorders Examination Questionnaire (EDE-Q 5.2).

Parental and teen data

The 55 fathers had a mean age of 47 years, and the mothers had a mean age of 46 years. Forty percent of the fathers were in the upper-to-high-middle class, and 49% of the mothers were classified as middle class. Twenty-six percent of the mothers were categorized as in the lower-middle-class category. Most patients were girls (96.4%; mean age:16 years). This sample had been diagnosed with AN for nearly 2 years, had a mean BMI of 14.3 on admission, and their lowest BMI was a mean of 13.61. The group was nearly evenly divided between restrictive AN and purging type AN.

Both parents expressed more grief when their child’s clinical state was more severe. Fathers’ grief was related to their own levels of depression and anxiety, while mothers’ grief was influenced by their own levels of depression and alexithymia. Even though fathers actually had higher levels of alexithymia, mothers’ emotions were more deeply related to their own grief, showing a more profound feeling of loss for their child.

Applying the results to parental caregiving

The authors feel that the information they gained may help clinicians to more carefully evaluate the elements of parental caregiving and “provide more targeted therapeutic interventions.” They note that loss and grief work would not be complete without also directing attention to the teen and who he or she “may be in the future.” They reiterated that between 50% to 60% of teens with AN will eventually improve or fully recover. Helping parents to address their intolerance of uncertainty may be highly effective, according to Dr. Duclos and her team. The concept is to help parents work on their intolerance of uncertainty, and the goal is to encourage encouraging parents to normalize the experience of ambiguous loss. and to regain a sense of mastery and hope for their child.

The authors pointed out that fathers need specific help to decrease their levels of anxiety; usually the mothers’ burden is given priority. This may be partially due to the fact that fathers’ attendance is often poor in family-oriented treatment, and decreases over time. Society in general, say the authors, tends to accept this pattern and thus unknowingly makes the mother the agent of change, merely increasing the mother’s distress. They also note that direct interview techniques are much preferable to the use of self-report questionnaires, which tend to minimize levels of the concept being measured.

The authors hope their results will help promote development and use of specific loss and grief programs for fathers, mothers, and children with AN. They have added some components of the non-death loss and grief-oriented theories to their own multifamily therapy and parent group programs for teens with AN. Studies of larger groups are needed, they note, to make way for identifying and helping to resolve parents’ feelings of loss and grief while they care for their child with AN.