1.1. Participants
The subjects of this study were family members with EDs who were over 20 years of age. The potential participants were recruited through the website of the Japan Association of Eating Disorders. We have done publicity for associations of families with EDs throughout Japan, as well as for several medical institutions.
1.2. Procedure
A cross-sectional questionnaire survey was conducted. The explanatory documents, consent forms, and questionnaires were distributed to those who offered to cooperate, either by mail or by hand. Six hundred copies of the questionnaire were distributed. Consent forms and completed questionnaires were collected by mail. Each respondent was paid a reward worth 1,000 yen.
1.3. Assessment
The questionnaire consisted of the following:
1) demographic information on respondents and their patients
The respondents were evaluated using demographic information, including their relationship with the patient, their age, whether they were the primary caregiver or not, and whether they were living together with the patient or not. We also collected background information on the patient, including their age, height, weight, their lowest past weight at the current height, diagnostic subtypes of EDs, history of hospitalization, history of the use of emergency medical services, and comorbid mental disorders. The patient’s Body Mass Index (BMI) was calculated based on their hei
2) Need for family peer support
We defined family peer support, noting that “individual peer support” refers to one-on-one face-to-face counseling, and I asked the following questions:
1. Do you think individualized family peer support is necessary?
2. Do you think family peer support group is necessary?
3.Would you like to have individualized family peer support?
4.Would you like to have family peer support group?
Each item is evaluated on a five-point scale.
3) Interest in studying or offering peer support
We asked about interest in studying or offering peer support, using a four-point scale: “Very interested and would like to offer if possible,” “Interested and willing to study,” “interested but cannot afford to training,” and “not interested.”
4) Social resources
We asked if they had used any of the following social resources:
- Discussion with the patient’s physician,
- Dialog with professionals (e.g., psychologists, nutritionists, nurses, etc.) involved with the patient other than the attending physician,
- Dialog among family members with EDs,
- Counseling and family therapy,
- Lectures by specialists,
- Lectures by parties (patients and recovering patients) and family members,
- Ongoing participation in family meetings and family classes,
- Books/DVDs/TV programs/Internet (websites, SNS, videos, etc.) by experts, and
- Books/DVDs/TV programs/Internet (websites, SNS, videos, etc.) by parties/families.
5) General health questionnaire (GHQ-12)
The GHQ-12 is a popular screening scale to measure general psychological health in a variety of settings [17]. It assesses symptoms of anxiety, social dysfunction, self-doubt, and depression. The GHQ-12 is a 12-item, 4-point scale using a “past two weeks” time frame designed to assess and detect psychiatric morbidity, with higher scores indicating poorer health. The GHQ-12 is rated on a 4-point Likert scale and uses two scoring methods. Using the Likert method, “not at all” = 0, “no more than usual” = 1, “rather more than usual” = 2 and “much more than usual” = 3. Using the GHQ method, “not at all” = 0, “no more than usual” = 0, “rather more than usual” = 1, and “much more than usual” = 1. The 3/4 cutoff point of the GHQ method score was used for screening possible mental disorder, and the Likert method score was used for other statistical analyses.
6) Japanese version of the Zarit caregiver burden interview (J-ZBI_8)
The Zarit Caregiver Burden Interview assesses the burden on caregivers [18]. The 8-item short Japanese version (J-ZBI_8) has a high level of reliability and validity, comparable to those of the full version [19]. Each item was evaluated on a 5-point Likert scale from 0 (Never) to 4 (Nearly always). A higher score indicates a higher caregiving burden.
7) Anorectic behavior observation scale (ABOS)
The ABOS is a 30-item questionnaire that evaluates the patient’s eating disorder and cognitive problems based on the family’s actual observations [20]. The Japanese version has been validated [21]. Each item asks about the patient’s condition over the previous month. A response is scored as 2 if the content of the problem is certainly present, as 1 if the content has not actually been seen or its presence is not certain, and as 0 if the content is certainly not applicable. A higher score indicates more severe symptoms from the family’s perspective.
8) General functioning Subscale of the McMaster family assessment device (GF-FAD)
The FAD is based on the McMaster Model of Family Functioning and has been widely used in the field of mental illness [22]. The Japanese version has been validated [23] . The General Functioning Subscale of the FAD (GF-FAD) consists of 12 items scored from 1 to 4. A higher score indicates that the respondent sees the family’s functioning as poorer.
1.4 Statistics
Wilcoxon's signed rank test was conducted to compare the need for individual peer support with the need for group peer support. To identify the characteristics of those with high peer support needs and those with low peer support needs, the group was divided into three groups according to peer support needs, and a one-way ANOVA and chi-square analysis of three factors were conducted. Similarly, a one-way analysis of variance and chi-square analysis of four factors were conducted on the willingness to provide peer support.