Objective: This study used a survey to assess the information and educational needs of family members of adults with mental illness and their preferences regarding how to address those needs.
Methods: Recruitment was attempted through two sources: local mental health treatment facilities and the Maryland chapter of the National Alliance on Mental Illness (NAMI). Inadequate contact information and low response rate produced only 16 responses from family members of consumers recruited through local mental health facilities. Thus results are reported for a family needs assessment survey mailed to NAMI members (308 of 962 possible responses). Bivariate and multivariate analyses were used to summarize relationships between characteristics of the family member, characteristics of the ill relative, experience of stigma by the family member, and information needs of the family members.
Results: On average, family members reported a substantial number of unmet needs (mean+/-SD of 7.09+/-4.71 needs; possible number of needs ranges from 0 to 16), often despite prior receipt of information. Family members' experiences of stigma and having an ill relative with a more recently occurring condition (for example, a younger relative or a shorter length of illness) or with a disabling condition (for example, recent hospitalization) were significantly associated with a greater number of unmet needs. Family members preferred that a mental health provider (63%) address their needs on an as-needed basis (58%).
Conclusions: The needs and preferences of family members of adults with mental illness are diverse and varied. Consequently, these families may benefit from ongoing provision of information and support tailored to meet the families' individual needs. Continued efforts should be made to understand and address consumer and family needs, potential barriers to participation in family services, and the relationship between stigma and family need.