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National Alliance on Mental Illness

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National Alliance on Mental Illness
Founded1977
FounderHarriet Shetler and Beverly Young
TypeNon-Profit 501c3
Area served
United States
MethodSupport, Education, Awareness, Advocacy and Research

The National Alliance On Mental Illness (NAMI) is a nationwide grassroots advocacy group, representing families and people affected by mental disorders in the United States. NAMI provides psychoeducation,[1] research and support for people and their families impacted by mental illness through various public education and awareness activities.[2] The National NAMI organization is based out of Arlington, Virginia. NAMI is organized further into State and Local affiliates, all operating mainly with the work of thousands of volunteers. Members of NAMI are typically consumers of mental health services, family members, and professionals working together toward a common goal.[3]

There are over 1,000 NAMI chapters, represented in all 50 states.[4] NAMI has 9 signature programs, many which have been shown to be efficacious in research studies.

History

NAMI was founded in Madison, Wisconsin by Harriet Shetler and Beverly Young. The two women cared for sons diagnosed with schizophrenia,[5] and were tired of their sons being blamed for their mental illness. Unhappy with the lack of services available and the treatment of those living with mental illness, the women sought out others with similar concerns. The first meeting held to address these issues in mental health was much larger than expected, and eventually led to the formation of the National Alliance on Mental Illness.[6][7]

Mission

NAMI works to keep family safety nets in place, to promote recovery and to reduce the burden on an overwhelmed mental health care delivery system. The organization works to preserve and strengthen family relationships challenged by severe and persistent mental illness. Through peer-directed education classes, support group offerings and community outreach programs, NAMI's programs and services draw on the experiences of mental health consumers and their family members. Members learn to successfully manage mental illness and are trained by the organization to help others do the same. In addition, NAMI works to eliminate pervasive stigma, to effect positive changes in the mental health system and to increase public and professional understanding about mental illness.

Structure

The National Alliance on Mental Illness is organized into state and local city or county wide affiliates in an attempt to more accurately represent those in the surrounding communities. National and State NAMI Organizations function to provide Governance, Public Education, Political Advocacy, and management of NAMI's Educational Programs. Providing support for mental health consumers occurs at more local levels, and typically involves assistance in obtaining mental health resources, scheduling and administration of NAMI's programs, and hosting local meetings and events for NAMI members in the community.

Programs

The National Alliance on Mental Illness offers an array of support and education programs at no cost for individuals and families. The programs are set up through local NAMI Affiliate organizations, with different programs varying in their targeted audience.

The NAMI Programs address multiple components of the psychiatric needs facing people who struggle with mental illness. Those needs can be visualized as a "three-legged stool" with access, diagnosis, and treatment as the three legs. The first leg is lack of access: sixty-seven percent of people with a DSM-IV diagnosis are not in any type of treatment, according to a 2005 article in the New England Journal of Medicine by Kessler and colleagues. Second is a need for correct diagnoses: fifty percent of people who received mental health treatment, in any setting, had no psychiatric diagnosis, according to Kessler and colleagues. The third issue is lack of effective treatment practices: over the last fifteen years, the field made great advances in reaching out and effectively treating people with mental illness. Kessler and colleagues showed that the treatment rate for people with serious mental disorder rose from 24.3 percent in 1990–1992 to 40.5 percent in 2001–2003.[8]

NAMI Family-to-Family

The NAMI Family-to-Family Education Program is a free 12-week course targeted toward family and friends of individuals with mental illnesses. The courses are taught by a NAMI-trained family member of a person diagnosed with a psychiatric disorder. Family-to-Family is taught in 44 states, and two provinces in Canada. The program was developed by Clinical Psychologist Joyce Burland, PhD.[9]

Purpose

The Family-to-Family program provides general information about mental illnesses and how they are currently treated. The programs cover mental illnesses including Schizophrenia, Depression, Bipolar Disorder, etc.), as well as the benefits and side effects of medications. Family-to-Family, like the rest of NAMI programs, takes a biologically-based approach to explaining mental illnesses and treatments.

In addition to providing information on mental illness, the Family-to-Family program teaches coping skills and the power of advocacy to students. Empathy is hoped to be gained by students' better understanding of the subjective experience of living with a mental illness. Special workshops also teach problem solving, listening, and communication techniques. Family-to-Family also provides advocacy support, offering family members guidance on locating support and services within surrounding areas, and information on current advocacy initiatives dedicated to improving available services.

Evidence Basis

The NAMI Family-to-Family program has been shown to empower families in the way they solve internal problems, and reduced the anxiety of participants in randomized controlled trials,[10] a finding which was shown to persist 6 months later.[11] These studies confirm preliminary findings that Family-to-Family graduates describe a permanent transformation in the understanding and engagement with mental illness in themselves and their family.[12] Because a randomized controlled trial is at risk of poor external validity by mechanism of a Self-selection, Dixon and colleges sought out to strengthen the evidence basis by confirming the benefits attributed to Family-to-Family with a subset of individuals who declined participation during initial studies[13]

The NAMI Family-to-Family program was found to be effective in increasing Schizophrenia patient caregivers' self-efficacy while reducing a subjective burden and need for information.[14] In light of recent research, Family-to-Family was added to the SAMSHA National Registry of Evidence-Based Programs and Practices (NREPP).[15]

NAMI Peer-to-Peer

The NAMI Peer-to-Peer is a 10-week educational program aimed at adults diagnosed with a mental illness. The NAMI Peer-to-Peer program describes the course as a holistic approach to recovery through lectures, discussions, interactive exercises, and teaching stress management techniques. The program provides a "toolkit" of information, teaching about the various mental disorders' biology, symptoms, and relation to personal experiences. The program also teaches about interacting with healthcare providers as well as decision making and stress reducing skills. The Peer-to-Peer philosophy is centered around certain values such as individuality, autonomy, and unconditional positive regard.

Preliminary studies have suggested Peer-to-Peer provided many of its purported benefits (e.g. self-empowerment, disorder management, confidence).[16] Peer interventions in general have been studied more extensively, having been found to increase social adjustment [17]

NAMI In Our Own Voice

The NAMI In Our Own Voice (IOOV) program started as a mental health consumer education program for people living with schizophrenia in 1996. The program was based on the idea that those successfully living with mental illness were experts in a sense, and sharing their stories would benefit those with similar struggles. The program approached this by relaying the idea that recovery is possible, attempting to build confidence and self-esteem. Because of the initial success of the program and positive reception, NAMI In Our Own Voice also took on the role of public advocacy.

NAMI In Our Own Voice involves two trained speakers presenting personal experiences related to mental illness, in front of an audience. Unlike the majority of NAMI's programs, In Our Own Voice consists of a single presentation educating groups of individuals with the acknowledgement many are likely unfamiliar with mental illness. The program's aims include raising awareness regarding NAMI and mental illness in general, addressing stigma, and empowering those affected by mental illness.[18] Other than those directly affected by mental illness, In Our Own Voice often educates groups of individuals like law enforcement, politicians, and students.

In Our Own Voice has been shown to be superior at reducing self stigmatization of families when compared to clinician led education.[19] Research into the effectiveness of the NAMI In Our Own Voice program has shown the program also can be of benefit to Graduate level therapists[20] and adolescents.[21]

NAMI Basics

The NAMI Basics Program is a six-session course for parents or other primary caregivers of children and adolescents living with mental disorders. NAMI Basics is conceptually similar to NAMI Family-to-Family in that it aims to educate families, but recognizes providing care for a child living with mental illness presents unique challenges in parenting, and that mental disorders in children typically manifest differently than in adults. Because of the development of the brain and nervous system throughout childhood and adolescence, information regarding mental illness biology and its presentation is fundamentally different than with adults. The NAMI Basics program has a relatively short time course to accommodate parents' difficulty in attending because of their caregiver status.

NAMI Connection

The NAMI Connection Recovery Support Group Program is a weekly support group connecting adults living with mental illness in a structured setting. The program is reserved for adults living with mental illness in order to promote self-disclosure by maintaining a confidential and relaxed environment. The support groups are led by trained facilitators who are considered to be "living in recovery" themselves.

NAMI On Campus

Students promoting a university affiliated NAMI On Campus organization

NAMI On Campus is an initiative for university students to start NAMI On Campus organizations within their respective universities. NAMI On Campus was started to address the mental health issues of college aged students. Adolescence and early adulthood are periods where the onset of mental disorders are common, with 75 percent of mental disorders beginning by age 24.[22] When asked what barriers, if any, prevented them from gaining support and treatment, surveys found stigma to be the number one barrier.[23]

Funding

Actress Carly Chaikin emceeing the 2016 NAMI Los Angeles Walk and introducing Secretary of State Alex Padilla

NAMI receives funding from both private and public sources, including corporations, federal agencies, foundations and individuals. NAMI maintains that it is committed to avoiding conflicts of interest and does not endorse nor support any specific service or treatment.[24] Records of NAMI's quarterly grants and contributions since 2009 are freely available on its website.[25]

Criticism

The funding of NAMI by multiple pharmaceutical companies was reported by the investigative magazine Mother Jones in 1999, including that an Eli Lilly & Company executive was then "on loan" to NAMI working out of NAMI headquarters.[26]

During an investigation into the drug industry’s influence on the practice of medicine U.S. Senator Chuck Grassley (R-IA) sent letters to NAMI and about a dozen other influential disease and patient advocacy organizations asking about their ties to drug and device makers. The investigation confirmed pharmaceutical companies provided a majority of NAMI's funding, a finding which led to NAMI releasing documents listing donations over $5,000.[27]

See also

References

  1. ^ "NAMI: National Alliance on Mental Illness | NAMI: The National Alliance on Mental Illness". nami.org. Archived from the original on 15 December 2012. Retrieved 20 October 2015. {{cite web}}: Unknown parameter |deadurl= ignored (|url-status= suggested) (help)
  2. ^ "NAMI: National Alliance on Mental Illness | About Us". nami.org. Retrieved 20 October 2015.
  3. ^ "NAMI at the Local, State and National Levels". nami.org. Retrieved 21 July 2014.
  4. ^ Martin, Douglass (3 Apr 2010). "Harriet Shetler, Who Helped to Found Mental Illness Group, Dies at 92". NYtimes.com. Retrieved 6 June 2014.
  5. ^ http://www.namiwisconsin.org/mission.cfm
  6. ^ Shrader, Emily (December 2011). The History of NAMI National, NAMI Pennsylvania, and NAMI PA Cumberland and Perry Counties (PDF). Retrieved 29 July 2014. [dead link‍]
  7. ^ "History :: NAMI Dane County". NAMI Dade County. Retrieved 3 November 2016.
  8. ^ Andres Barkil-Oteo (September 21, 2012). "Can a Three-Legged Stool Save Psychiatry?". psychnews.psychiatryonline.org. Retrieved 20 October 2015.
  9. ^ "Joyce Burland, Ph.D." nami.org. Retrieved 21 July 2014.
  10. ^ Dixon, Lisa (June 2011). "Outcomes of a Randomized Study of a Peer-Taught Family-to-Family Education Program for Mental Illness". Psychiatric Services. 62 (6): 591–507. doi:10.1176/appi.ps.62.6.591. PMID 21632725.
  11. ^ Lucksted, Alicia (June 1, 2012). "Sustained outcomes of a peer-taught family education program on mental illness". Acta Psychiatrica Scandinavica. 127 (127): 279–286. doi:10.1111/j.1600-0447.2012.01901.x.
  12. ^ Lucksted, Alicia (2008). "Benefits and changes for family to family graduates". American Journal of Community Psychology. 42 (1–2): 154–166. doi:10.1007/s10464-008-9195-7. PMID 18597167.
  13. ^ Marcus, Sue (August 2013). "Generalizability in the Family-to- Family Education Program Randomized Waitlist-Control Trial". Psychiatric Services. 64 (8): 754–763. doi:10.1176/appi.ps.002912012. PMID 23633161.
  14. ^ Yildirim, Arzu (March 13, 2013). "The Effect of Family-to-Family Support Programs Provided for Families of Schizophrenic Patients on Information about Illness, Family Burden, and Self-efficacy". Turkish Journal of Psychiatry. 25 (1): 31–37. doi:10.5080/u7194. PMID 24590847.
  15. ^ "National Alliance on Mental Illness (NAMI) Family-to-Family Education Program". U.S. Department of Health and Human Services: Substance abuse and Mental Health Administration. Archived from the original on 19 July 2014. Retrieved 21 July 2014. {{cite web}}: Unknown parameter |deadurl= ignored (|url-status= suggested) (help)
  16. ^ Lucksted, Alicia (2009). "Initial Evaluation of the Peer-to-Peer Program". Psychiatric Services. 60 (2): 250–3. doi:10.1176/appi.ps.60.2.250. PMID 19176421.
  17. ^ Roberts, LJ (1999). "Giving and receiving help: interpersonal transactions in mutual-help meetings and psychosocial adjustment of members". American Journal of Community Psychiatry. 6 (27): 841–868.
  18. ^ "NAMI In Our Own Voice General Information". NAMI.org. Archived from the original on 28 January 2015. Retrieved 28 July 2014. {{cite web}}: Unknown parameter |deadurl= ignored (|url-status= suggested) (help)
  19. ^ Perlick, D. A.; Nelson, A. H.; Mattias, K; Selzer, J; Kalvin, C; Wilber, C. H.; Huntington, B; Holman, C. S.; Corrigan, P. W. (December 2011). "In Our Own Voice–Family Companion: Reducing Self-Stigma of Family Members of Persons With Serious Mental Illness". Psychiatric Services. 12 (62): 1456–1462. doi:10.1176/appi.ps.001222011. PMID 22193793.
  20. ^ Pittman, JO (Winter 2010). "Evaluating the Effectiveness of a Consumer Delivered Anti-Stigma Program: Replication with Graduate-Level Helping Professionals". Psychiatric Rehabilitation Journal. 33 (3): 236–238. doi:10.2975/33.3.2010.236.238. PMID 20061261.
  21. ^ Pinto-Foltz, Melissa (June 2011). "Feasibility, acceptability, and initial efficacy of a knowledge-contact program to reduce mental illness stigma and improve mental health literacy in adolescents". Social Science & Medicine. 72 (12): 2011–2019. doi:10.1016/j.socscimed.2011.04.006. PMC 3117936. PMID 21624729.
  22. ^ "Mental Illness Exacts Heavy Toll, Beginning in Youth". National Institute of Mental Health. National Institute of Health. June 6, 2005. Retrieved 28 July 2014.
  23. ^ Gruttadaro, Darcy. "College Students Speak: A Survey Report on Mental Health". National Alliance on Mental Illness. Retrieved 28 July 2014.
  24. ^ "Guidelines for Business Support Relationships". NAMI National Board of Directors Operating Policies and Procedures. National Alliance on Mental Illness. Retrieved 21 July 2014.
  25. ^ "Major Foundation and Corporate Support". nami.org. Retrieved 21 July 2014.
  26. ^ Richard Gosden and Sharon Beder Pharmaceutical Industry Agenda Setting in Mental Health Policies Ethical Human Sciences and Services 3(3) Fall/Winter 2001, pp. 147-159.
  27. ^ Harris, Gardiner. "Drug Makers Are Advocacy Group's Biggest Donors". New York Times. Retrieved 29 July 2014.
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