Informed and cared for parents, a pillar for adolescents with anorexia
Many parents feel helpless and afraid of making mistakes when their child suffers from this eating disorder. Two mothers share their experiences with the disease and its treatment.
Public Healthcare Focuses Solely on the Patient
Public healthcare attention for anorexia is limited to the patient, once a month in short sessions.
July 2023, 11:30 am at the Mental Health Center of the Hospital del Tajo, in the south of Madrid. The waiting room is full of patients. Adults and adolescents are mixed together. It’s Carmen’s (16 years old) turn, diagnosed with anorexia, and her parents. They enter the consultation room, talk to the child psychiatrist, and after 10 minutes, the parents leave and leave their daughter with the specialist. From this point on, what the patient and the doctor talk about in the consultation stays there, as the doctor has informed the parents to comply with the confidentiality clause, unless there is relevant information for them.
The focus is basically on the patient, but what about the family? “Parents and siblings are left on the sidelines, so you try to seek support and information through other channels. As for patient care, with public healthcare alone it is not enough because the consultation is once a month. In addition, you have to find a support psychologist in the private sector to see the patient weekly,” explains Martina (fictitious name), a medical doctor at a Barcelona hospital and mother of David (fictitious name), 12 years old, diagnosed with anorexia three months ago. “In the public system, consultations are scheduled infrequently and have a very limited time, so there is no room for families, who feel totally helpless, alone, and very afraid of making mistakes,” says Bárbara Alcaide García, a psychologist specializing in Eating Disorders (ED) at the Family and Affected Persons Care Service of the Association against Anorexia and Bulimia (ACAB). “However,” she continues, “the family is a basic pillar, because being informed and prepared will facilitate recovery.”
Lack of Information and Time
Flors Moreno Aguilar, a resident of the municipality of Tremp (Lleida) and mother of Lluna Iglesias Moreno, a 21-year-old girl who has suffered from anorexia since she was 12, has also felt this lack of information and time. “The problem with consultations is that there is no space for the family, so if you want to intervene or have doubts about your daughter’s disorder and how to deal with it, you are taking time away from your daughter or the patient who comes next,” laments this mother.
The ANAR Foundation, an organization that helps children and adolescents at risk of suffering from an ED, warns that disorders such as anorexia or bulimia in adolescents continue to increase. Anorexia is characterized by a significant restriction of food intake, an intense fear of gaining weight, and a distortion of body perception, which is not always easy to detect. “A cousin of Lluna warned us that when she stayed for lunch at school she would throw away the food. This is what alerted us. I had noticed that she was sadder and would lock herself in her room alone, but I thought it was typical of adolescence,” admits Moreno. “We acted quickly, although when this explodes you are already late because it has been brewing for some time,” she adds.
Martina’s experience as a doctor allowed her to quickly detect what was happening to her son and act quickly as well: “I noticed that he was sad and discouraged and that he was eating less, but I thought he was going through a bad time because he had also suffered bullying at school. After a few months he started to lose weight and told me that he saw himself as fat. In addition, I saw how he hid the scale under the rug… As I work in a hospital, the following week the psychiatrist saw him.”
The Family as a Driving Force for Change
Empowering the family to serve as a driving force for change in addressing this disorder is the priority of a new treatment model recently launched by the Sant Joan de Déu Hospital in Barcelona. This treatment allows the entire family to be admitted in very severe cases and is based on successful experiences carried out in Sweden and Australia. “It is a new unit whose objective is to treat high-complexity eating disorders, that is, patients who, despite having been in treatment for more than a year in total or partial hospitalization, relapse recurrently after being discharged,” explains Eduardo Serrano Troncoso, child and adolescent psychologist and coordinator of the Eating Disorders Unit at this hospital.
This new model focuses its intervention on the entire family, not just the patient. “It is a systemic family therapy, where we analyze the relationships and dysfunctions that occur in the home due to having a person with an eating disorder and intervene globally to have an overall vision,” says Serrano. The expert explains that with this treatment they seek to empower the family so that they have skills with which to manage the symptoms of the disease at home.
The results of this program, which lasts approximately four months and has been running for just over six months, are promising: “Although we do not yet have a large enough sample for it to be statistically significant, preliminary data show that families feel more confident after discharge because they have the tools to manage emotional distress and difficulties during meals,” explains Serrano.
How to Act as a Family?
The way each family faces the problem is different. The prestigious British psychiatrist Janet Treasure, in her book Eating Disorders: A Practical Guide to Caring for a Loved One, proposes the metaphor of animals to become aware of the family’s emotional response style and to promote a more adaptive one. “For example, the ostrich is the type of caregiver who buries his head in the sand and sees nothing, while the rhinoceros takes everything on and has a tendency to control. On the other hand, the dolphin swims along and is the figure that corresponds to a family that knows how to accompany well,” details Alcaide.
For this psychologist, parents and siblings must have empathy for the affected person, for their son/daughter who is suffering a lot, and adopt a role of accompaniment: “For example with food, they should not insist that they eat and eat, but they have to tell them: ‘We know it is very difficult for you, this that we offer you is what the nutritionist or the nurse has told us, we want you to get out of this, we know that you are having a very bad time’. In short, as she summarizes, do not act as therapists, but as parents. Another recommendation that Alcaide provides is that food, weight, and body image should not be discussed at home: “There are behaviors that we normalize, such as saying ‘you look very good’, but the patient translates it into ‘he is telling me that I look good, I must have gained weight’.”
Moreno, who has been living with her daughter Lluna’s anorexia for nine years, recommends that parents try to talk to the specialist who is treating their child so that they can also attend them whenever possible: “And then, they should seek information in specific associations on EDs and train themselves on the subject. From there, it is important to accept that they have the disease and to be clear about the guidelines on how to accompany them in the process.”
