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National Alliance on Mental Illness (NAMI) Family-to-Family Education Program

The National Alliance on Mental Illness (NAMI) Family-to-Family Education Program is a 12-session course for family caregivers of individuals living with serious mental illness. The curriculum-based course covers a range of topics, including participants' emotional responses to the impact of mental illness on their lives, current information about many of the major mental illnesses, current research related to the biology of brain disorders, and information on the evidence-based treatments that are most effective in promoting recovery.

The NAMI Family-to-Family Education Program is led by a two-person team of volunteer teachers, who themselves are family caregivers of an individual living with serious mental illness. Sessions are 2.5 hours each and can be delivered by the teachers on a weekly or biweekly basis. Through a variety of skills-building exercises conducted over the 12 sessions, participants gain empathy by understanding the subjective, lived experiences of a person with mental illness; learn new techniques for problem solving, listening, and communicating; acquire strategies for handling crises and relapses; learn methods for coping with worry and anxiety; and receive guidance on locating appropriate supports and services within the community.

Before leading the program, each teacher must participate in an intensive training workshop to learn how to deliver the structured course curriculum.

Descriptive Information

Areas of Interest Mental health promotion
Mental health treatment
Outcomes Review Date: November 2012
1: Empowerment
2: Knowledge about mental illness
3: Problem solving
4: General anxiety
Outcome Categories Mental health
Ages 26-55 (Adult)
55+ (Older adult)
Genders Male
Female
Races/Ethnicities Asian
Black or African American
Hispanic or Latino
White
Race/ethnicity unspecified
Settings Other community settings
Geographic Locations Urban
Suburban
Rural and/or frontier
Implementation History The NAMI Family-to-Family Education Program was launched in 1991 in Vermont and has since been implemented in 49 States, the District of Columbia, and Puerto Rico. It has also been implemented in Canada, Italy, and Mexico. More than 3,500 trained volunteers teach the course, and more than 300,000 family caregivers have completed the NAMI Family-to-Family Education Program.
NIH Funding/CER Studies Partially/fully funded by National Institutes of Health: Yes
Evaluated in comparative effectiveness research studies: No
Adaptations All of the materials for the NAMI Family-to-Family Education Program have been translated into Spanish and culturally adapted for use in Mexico and Puerto Rico; the Spanish version is known as NAMI de Familia a Familia. NAMI Family-to-Family Education Program manuals also have been translated, but not culturally adapted, into Arabic, French, Italian, Mandarin Chinese, and Vietnamese.
Adverse Effects No adverse effects, concerns, or unintended consequences were identified by the developer.
IOM Prevention Categories Selective

Quality of Research
Review Date: November 2012

Documents Reviewed

The documents below were reviewed for Quality of Research. The research point of contact can provide information regarding the studies reviewed and the availability of additional materials, including those from more recent studies that may have been conducted.

Study 1

Dixon, L., Stewart, B., Burland, J., Delahanty, J., Lucksted, A., & Hoffman, M. (2001). Pilot study of the effectiveness of the Family-to-Family Education Program. Psychiatric Services, 52(7), 965-967.  Pub Med icon

Study 2

Dixon, L., Lucksted, A., Stewart, B., Burland, J., Brown, C. H., Postrado, L., et al. (2004). Outcomes of the peer-taught 12-week Family-to-Family Education Program for severe mental illness. Acta Psychiatrica Scandinavica, 109(3), 207-215.  Pub Med icon

Study 3

Dixon, L. B., Lucksted, A., Medoff, D. R., Burland, J., Stewart, B., Lehman, A. F., et al. (2011). Outcomes of a randomized study of a peer-taught family-to-family education program for mental illness. Psychiatric Services, 62(6), 591-597.  Pub Med icon

Lucksted, A., Medoff, D., Burland, J., Stewart, B., Fang, L. J., Brown, C., et al. (2013). Sustained outcomes of a peer-taught family education program on mental illness. Acta Psychiatrica Scandinavica, 127(4), 279-286.  Pub Med icon

Outcomes

Outcome 1: Empowerment
Description of Measures Empowerment was measured using the Family Empowerment Scale (FES), a 34-item questionnaire that assesses family caregivers' confidence that they can meet challenges facing their families. Items are grouped to form three subscales of empowerment: Family, Community, and Service System. Using a scale ranging from 1 (not true at all) to 5 (very true), participants rate each item (e.g., "When problems arise with my child, I handle them pretty well," "When necessary I look for services for my child and family"). Higher scores indicate a greater sense of empowerment.
Key Findings In one study, family members participating in the NAMI Family-to-Family Education Program were assessed at baseline, program completion, and 6 months after program completion (follow-up). From baseline to program completion, participants improved in all three subscales of empowerment: Family (p < .001), Community (p < .001), and Service System (p < .001). No significant differences in empowerment were found from program completion to the 6-month follow-up.

In another study, family members participating in the NAMI Family-to-Family Education Program were assessed 3 months before receiving the intervention, immediately before (pretest) and after (posttest) receiving the intervention, and 6 months after program completion (follow-up). Posttest and 6-month follow-up scores were higher than scores from the assessments at 3 months before the intervention and at pretest for all three subscales of empowerment: Family (p < .001), Community (p < .001), and Service System (p < .001).

In a third study, participants were randomly assigned to the intervention group, whose members received the NAMI Family-to-Family Education Program immediately, or the wait-list control group. All participants were assessed at the beginning of the study (baseline) and 3 months later, after the intervention group participants completed the program. From baseline to the 3-month assessment, participants in the intervention group had greater improvements than control group participants in all three subscales of empowerment: Family (p = .027), Community (p = .012), and Service System (p = .005). The changes in the Family and Community empowerment subscales were associated with small effect sizes (Cohen's d = 0.31 and 0.42, respectively), and the change in the Service System empowerment subscale was associated with a medium effect size (Cohen's d = 0.50). Participants in the intervention group also were assessed 9 months after baseline (i.e., 6 months after program completion). From baseline to the 9-month assessment, participants in the intervention group had improvements in all three subscales of empowerment: Family (p < .001), Community (p < .001), and Service System (p = .009).
Studies Measuring Outcome Study 1, Study 2, Study 3
Study Designs Experimental, Preexperimental
Quality of Research Rating 2.4 (0.0-4.0 scale)
Outcome 2: Knowledge about mental illness
Description of Measures Knowledge about mental illness was measured using the Family-to-Family Scale, a 15-item questionnaire developed by the investigators to assess program outcomes. Using a scale ranging from 1 (strongly disagree) to 4 (strongly agree), participants rate each item (e.g., "I understand the medications used to treat mental illness," "I have information about the different mental health programs currently available for persons with severe mental illness"). Ratings for all items are summed to produce a single score, with higher scores indicating greater knowledge about mental illness.
Key Findings In one study, family members participating in the NAMI Family-to-Family Education Program were assessed 3 months before receiving the intervention, immediately before (pretest) and after (posttest) receiving the intervention, and 6 months after program completion (follow-up). Posttest and 6-month follow-up scores for knowledge about mental illness were higher than scores from the assessments at 3 months before the intervention and at pretest (p < .001).

In another study, participants were randomly assigned to the intervention group, whose members received the NAMI Family-to-Family Education Program immediately, or the wait-list control group. All participants were assessed at the beginning of the study (baseline) and 3 months later, after the intervention group participants completed the program. From baseline to the 3-month assessment, participants in the intervention group had a greater improvement than control group participants in knowledge about mental illness (p = .016). This change was associated with a small effect size (Cohen's d = 0.40). Participants in the intervention group also were assessed 9 months after baseline (i.e., 6 months after program completion). From baseline to the 9-month assessment, participants in the intervention group had an improvement in knowledge about mental illness (p < .001).
Studies Measuring Outcome Study 2, Study 3
Study Designs Experimental, Preexperimental
Quality of Research Rating 2.1 (0.0-4.0 scale)
Outcome 3: Problem solving
Description of Measures Problem solving was assessed using the 5-item Problem-Solving subscale of the Family Assessment Device, a 12-item series of questions regarding family functioning and relations. Using a 4-point scale ranging from "strongly agree" to "strongly disagree," participants rate each item (e.g., "We usually act on our decisions regarding problems," "After our family tries to solve a problem, we usually discuss whether it worked or not"). Ratings for all items are summed to produce a single score, with lower scores indicating more effective problem solving.
Key Findings Participants were randomly assigned to the intervention group, whose members received the NAMI Family-to-Family Education Program immediately, or the wait-list control group. All participants were assessed at the beginning of the study (baseline) and 3 months later, after the intervention group participants completed the program. From baseline to the 3-month assessment, participants in the intervention group had a greater improvement than control group participants in problem solving (p = .019). This change was associated with a small effect size (Cohen's d = 0.30). Participants in the intervention group also were assessed 9 months after baseline (i.e., 6 months after program completion). From baseline to the 9-month assessment, participants in the intervention group had an improvement in problem solving (p = .02).
Studies Measuring Outcome Study 3
Study Designs Experimental
Quality of Research Rating 3.3 (0.0-4.0 scale)
Outcome 4: General anxiety
Description of Measures General anxiety was assessed using the 6-item Anxiety scale of the Brief Symptom Inventory. Using a scale ranging from 0 (not at all) to 4 (extremely), participants rate each item for the intensity of distress caused by anxiety in the preceding 7 days (e.g., "During the last 7 days, how much were you distressed by nervousness or shakiness inside?" and "During the last 7 days, how much were you distressed by feeling tense or keyed up?"). Ratings for all items are summed to form a single score, with lower scores indicating less general anxiety.
Key Findings Participants were randomly assigned to the intervention group, whose members received the NAMI Family-to-Family Education Program immediately, or the wait-list control group. All participants were assessed at the beginning of the study (baseline) and 3 months later, after the intervention group participants completed the program. From baseline to the 3-month assessment, participants in the intervention group had a greater reduction than control group participants in general anxiety (p = .04). This change was associated with a small effect size (Cohen's d = 0.26). Participants in the intervention group also were assessed 9 months after baseline (i.e., 6 months after program completion). From baseline to the 9-month assessment, participants in the intervention group had a reduction in general anxiety (p = .005).
Studies Measuring Outcome Study 3
Study Designs Experimental
Quality of Research Rating 3.3 (0.0-4.0 scale)

Study Populations

The following populations were identified in the studies reviewed for Quality of Research.

Study Age Gender Race/Ethnicity
Study 1 26-55 (Adult)
55+ (Older adult)
83.8% Female
16.2% Male
81.1% White
18.9% Black or African American
Study 2 26-55 (Adult)
55+ (Older adult)
72.6% Female
27.4% Male
72.6% White
27.4% Race/ethnicity unspecified
Study 3 26-55 (Adult)
55+ (Older adult)
75.7% Female
23.2% Male
71.8% White
21.2% Black or African American
3.1% Race/ethnicity unspecified
2.3% Asian
1.5% Hispanic or Latino

Quality of Research Ratings by Criteria (0.0-4.0 scale)

External reviewers independently evaluate the Quality of Research for an intervention's reported results using six criteria:

  1. Reliability of measures
  2. Validity of measures
  3. Intervention fidelity
  4. Missing data and attrition
  5. Potential confounding variables
  6. Appropriateness of analysis

For more information about these criteria and the meaning of the ratings, see Quality of Research.

Outcome Reliability
of Measures
Validity
of Measures
Fidelity Missing
Data/Attrition
Confounding
Variables
Data
Analysis
Overall
Rating
1: Empowerment 1.5 2.4 2.2 2.4 2.7 3.5 2.4
2: Knowledge about mental illness 0.6 0.6 2.4 2.3 2.8 3.8 2.1
3: Problem solving 3.5 4.0 2.8 2.6 3.0 4.0 3.3
4: General anxiety 3.5 4.0 2.8 2.6 3.0 4.0 3.3

Study Strengths

Two of the instruments used--the Family Assessment Device and the Brief Symptom Inventory--have strong and stable psychometric properties. Efforts made to enhance and assess intervention fidelity got progressively stronger with each study; for example, a measure to assess fidelity was piloted in an early study and deployed in later ones. Also, the curriculum-based program is highly scripted, likely resulting in a standardized delivery. Attrition and missing data were low in two of three studies and moderate by the last assessment point in the third study, which used a sophisticated multiple imputation analysis to assess the potential impact of missing data. Statistical procedures were appropriate for each study's design and data.

Study Weaknesses

Two of the study instruments--the Family Empowerment Scale and the Family-to-Family Scale--lack measures of interrater or test-retest reliability and evidence of validity beyond face validity. Although a fidelity measurement instrument was developed, it was used in only a small number of sessions in one of the studies, which was a pilot study. One study reported moderate attrition, but it did not account for possible differences between participants who were lost and those who remained in the study. In another study, because of differential attrition rates, there were significant demographic differences across study groups at the conclusion of the study. Two of the three studies lacked a comparison or control group.

Readiness for Dissemination
Review Date: November 2012

Materials Reviewed

The materials below were reviewed for Readiness for Dissemination. The implementation point of contact can provide information regarding implementation of the intervention and the availability of additional, updated, or new materials.

Burland, J. (2011). NAMI Family-to-Family Education Program participant manual (4th ed.). Arlington, VA: National Alliance on Mental Illness.

Burland, J. (2011). NAMI Family-to-Family Education Program teacher manual (4th ed.). Arlington, VA: National Alliance on Mental Illness.

Burland, J. (2011). NAMI Family-to-Family Education Program trainer manual (4th ed.). Arlington, VA: National Alliance on Mental Illness.

Burland, J. (2011). Parents and teachers as allies: Recognizing early-onset mental illness in children and adolescents. Arlington, VA: National Alliance on Mental Illness.

National Alliance on Mental Illness. (2007). NAMI Child & Adolescent Action Center: Resource guide. Arlington, VA: Author.

National Alliance on Mental Illness. (2012, Winter). Achieving school success. NAMI Beginnings, 19.

National Alliance on Mental Illness. (2012, Winter). Finding our way through psychosis. NAMI Advocate, 10(1).

National Alliance on Mental Illness. (n.d.). Master class for Family-to-Family teachers [CD]. Arlington, VA: Author.

National Alliance on Mental Illness. (n.d.). NAMI Family-to-Family class 5 problem solving workshop [DVD]. Arlington, VA: Author.

National Alliance on Mental Illness. (n.d.). NAMI Family-to-Family community outreach [DVD]. Arlington, VA: Author.

National Alliance on Mental Illness. (n.d.). NAMI Family-to-Family tribute [DVD]. Arlington, VA: Author.

National Alliance on Mental Illness brochures:

  • Improving Lives: Be Part of the Solution
  • NAMI Basics
  • NAMI Connection: Talk to Someone Who Understands Someone Just Like You
  • NAMI in Our Own Voice
  • The NAMI Family-to-Family Education Program
  • The NAMI Peer-to-Peer Education Program

National Alliance on Mental Illness Education, Training, and Peer Support Newsletters [Issues 7-10]

Program Web site, http://www.nami.org/f2f

Readiness for Dissemination Ratings by Criteria (0.0-4.0 scale)

External reviewers independently evaluate the intervention's Readiness for Dissemination using three criteria:

  1. Availability of implementation materials
  2. Availability of training and support resources
  3. Availability of quality assurance procedures

For more information about these criteria and the meaning of the ratings, see Readiness for Dissemination.

Implementation
Materials
Training and Support
Resources
Quality Assurance
Procedures
Overall
Rating
4.0 3.8 2.8 3.5

Dissemination Strengths

Materials are detailed and comprehensive, and they include clear and practical guidelines for implementation. They also provide operational policies and procedures that form the foundation of the program and its intended use. Implementation and training materials are available as hard copies or electronic files, and they also are available in several languages, making them accessible to wide variety of implementers. The train-the-trainer model helps implementation sites build program capacity at the local level. An evaluation form is provided for teachers after they have completed the training and for participants after they have completed the program. The evaluation form includes a section for narrative comments on overall impressions of the training or course and how the training or course could be enriched.

Dissemination Weaknesses

There is no written description of the support available for teachers and how it can be accessed. There is no discussion about how the operational policies and procedures directly relate to quality assurance or how quality assurance should be measured with the teacher and participant evaluation forms. Tools for measuring whether the program is being delivered as intended are limited.

Costs

The cost information below was provided by the developer. Although this cost information may have been updated by the developer since the time of review, it may not reflect the current costs or availability of items (including newly developed or discontinued items). The implementation point of contact can provide current information and discuss implementation requirements.

Item Description Cost Required by Developer
NAMI Family-to-Family Education Program Teacher Manual Free for online electronic file, or $29 per hard-copy binder Yes
NAMI Family-to-Family Education Program Participant Manual Free for online electronic file, or $17 per hard-copy binder Yes
NAMI Family-to-Family Education Program Trainer Manual Free for online electronic file, or $29 per hard-copy binder Yes
Annual 2.5-day Training of State Trainers (for 12-20 participants) $450 per participant (includes meals, lodging, and training materials) Yes
2.5-day State Training of Teachers, coordinated by State NAMI organizations Varies depending on location and, if necessary, travel expenses Yes
Webinar-, phone-, or email-based technical assistance Free No
Teacher evaluation forms Free Yes
Participant evaluation forms Free Yes
Replications

Selected citations are presented below. An asterisk indicates that the document was reviewed for Quality of Research.

Deal, P. (1998, August). Outcomes associated with participation in a family education program for caregivers of individuals with serious mental illness (Unpublished Ph.D. dissertation). University of Mississippi, Oxford, MS.

Contact Information

To learn more about implementation, contact:
Teri S. Brister, Ph.D., LPC
(703) 534-7600
tbrister@nami.org

To learn more about research, contact:
Alicia Lucksted, Ph.D.
(410) 706-3244
aluckste@psych.umaryland.edu

Consider these Questions to Ask (PDF, 54KB) as you explore the possible use of this intervention.

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