Support Groups For individuals With Narcolepsy And Their Families: Narcolepsy Institute

The improvement of QOL in narcolepsy depends on effective management of clinical symptoms; however, pharmacological management is not optimal and the psychosocial effects indicate the relevance of managing the impact of narcolepsy by psychological and social support.  

Social factors play an important role in improving the QOL  since they are inextricably involved with health status (House et al., 1988; Susser and Watson 1985). Social network variables have a direct relationship with mortality rates (Berkman and Syme 1979) and some significantly affect overall health status of patients with chronic diseases (Fitzpatrick et al.,  1988). Social support is the degree to which a person's basic needs are gratified through interaction with others. These basic needs may be emotional: affection, sympathy, understanding, acceptance and esteem from significant others, or instrumental: advice, information, assistance with responsibilities, and economic help (Thoits 1982). Patients often seek support in self  help groups whichare run by patients who share knowledge acquired through a common experience with an illness (Surgeon General Koop=s report by Mary Huber 1987). Support groupsare led by a professional facilitator (Sivesind and Baile 1997). The mission is to provide mutual aid in a small group structure to serve the core needs of the members which include sharing information, providing advocacy, support, and affirmation as well as the opportunity to socialize (Katz and Bender 1976). Studies have shown the positive effects of support groups in chronic illnesses including cancer (Stewart and Davidson 2001), diabetes (Gilden et al., 1992), and cardiac conditions (Hildingh and Fridlund 2003).

Narcolepsy Institute Support Group Evaluation.

Patients who are diagnosed with narcolepsy are registered with the Narcolepsy Institute for counseling, participation in  support groups, behavior modification, and case management. The program schedules 10 groups per year and all participants volunteer to attend these groups . Fifteen frequent members attend most of the groups and about 15 attend infrequently. Considering that 75 members in New York City had registered for the Family Support Program in 2000-2001 we had an attendance rate of 40%. An annual program evaluation is an integral part of this program. A questionnaire with structured and open-ended questions was administered to 15 group members in 2000. The questionnaire is designed to assess patients's satisfaction with services, their needs, and their perception of support groups. This information is valuable in making changes in program development. A qualitative analysis of patient's responses to the question related to benefits of support groups at the Narcolepsy Institute is presented. All responses to an open-ended question on benefits of attending support groups were classified into three categories: emotional benefits, information, and services received from the Narcolepsy Institute.

Emotional support indicated by the following comments: The give and take; I learn to share; received genuine love and caring; I am not alone; it helps me to be stronger; I feel optimistic; I get guidance; I derive emotional strength and information from other peoples' experience; they have changed my life and provide continuous support.

Information or Instrumental support indicated by the following comments: Very good information on medications, diet, and nutrition (most responses).My understanding of how narcolepsy affects my own life has been broadened immeasurably, thanks to these sessions. I learn about living with a disorder and concern for others. I learned to keep an organized schedule. I adopted good food habits that are helpful in staying awake.


"Counseling is very good; support groups; support from other patients; newsletter; staff has a positive approach; personal attention; they are always there to help me."

Our patient's responses reveal that they derived invaluable benefits from group meetings.Support groups provide a forum for information exchange about the common aspects of a condition or disorder, acceptance by peers who are similarly affected, mutual understanding, and access to pertinent resources. A supportive and caring environment allows participants to talk freely about their feelings of isolation, lack of understanding from others, and fear of social or emotional rejection that many with narcolepsy experience. Patients feel reassured, develop confidence, and a positive outlook. Social support may strengthen individual coping behavior by increasing morale or self-esteem.

Meeta Goswami BDS MPH PhD
Director-Narcolepsy Institute
Montefiore Medical Center
111 East 210th Street
Bronx, NY 10467

Phone: (718) 920-6799 | Fax: (718) 654-9580 | Hours: Mon-Thur 9AM to 5PM

The Narcolepsy Institute has monthly Group Meetings. Our schedule can be found by clicking here.

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