Caring for the Caregivers

A program designed to help
caregivers combat stress.

Caring for a patient with an eating disorder can produce high levels of distress. In one study, 40 caregivers of eating disorder patients had a poorer quality of life than did a normal reference group. Mental health, vitality, and emotional functioning were most impaired, and the eating disorder appeared to affect families’ lives substantially. Caregivers reported feeling anxious, powerless, sad, or desperate. The relationship of the caregiver with the eating disorder patient had also changed. Caregivers were more worried, lost their trust, and reported more conflicts. Seventy-five percent welcomed professional support (Eat Disord 2005; 13:345).

To help caregivers combat such stress, a team of British researchers have proposed a cognitive interpersonal maintenance model of eating disorders. The program is Expert Carers Helping Others (ECHO).This cognitive interpersonal maintenance model provides a theoretical basis for intervention, according to Dr. Elizabeth Goddard and colleagues at Kings College, London (Br J Psychiatry 2011; 199:225). The British researchers recently tested the model in a community sample of caregivers recruited from the United Kingdom between Septembers 2006 and February 2009. The participants were partners, siblings, other relatives, and friends who provide unpaid help and support for patients with eating disorders.

All caregivers were first assessed once consent was obtained; they then waited for 6 weeks and were reassessed before the actual 6-week intervention was initiated. This waiting period allowed the researchers to examine the stability of the care-giving experience over a period equivalent to the intervention period. After a second assessment, 119 caregivers were randomized to receive self-help only (ECHO) or guided self-help (ECHO). All participants were given a book and five DVDs after the second assessment. These self-help materials included information on behavior and health, identifying barriers to change, general encouragement, behavioral goals and contracts, modeling, promotes and graded tasks, self-talk, and stress-management skills. Those in the guided self-help group also received 3 additional telephone coaching sessions (approximately 40 minutes in length), plus an introductory telephone call lasting 15 to 20 minutes. Most of these sessions were delivered by two coaches, one of whom had been a caregiver herself and another who was a senior clinical nurse specializing in eating disorders.

A number of measures were used to assess caregiver distress, including the General Health Questionnaire and the Hospital Anxiety and Depression Scale. The caregivers were asked to mark which characteristics and behaviors they could identify in their loved one at that time, including severe underweight, food restriction, and excessive exercising. They were also asked to rate on a visual analog scale the proportion of DVSs they watched (0= none; 10= all).

How effective was the intervention?

The aims of the exploratory study were to test the interpersonal maintenance model and to test whether telephone guidance improved the effectiveness of a self-help intervention. Caregiver distress and almost all secondary outcomes derived from the model improved after the intervention. The caregivers also reported improvements in the loved one’s level of functioning and eating disorders symptoms. However, the researchers were surprised to learn that adding telephone coaching did not add additional benefits to the self-help-only intervention.

The impact of the ECHO program was greatest for caregivers with the highest levels of expressed emotion, accommodation and enabling behaviors and the lowest self-efficacy. Watching more DVDs also produced a greater reduction in expressed emotion and accommodating and enabling behaviors.

The authors note that the cognitive interpersonal model was supported by the results of this study. The skills training involved is low in cost and can be easily disseminated. Dr. Goddard and colleagues also feel that acceptability of the ECHO program could have been improved by making the training materials more attractive and salient. They note that a Phase III trial with direct measurement of eating disorder psychopathology, and using a treatment control group would be an excellent addition for the future.