Preferences for Family Involvement in Care Among Consumers With Serious Mental Illness

Despite robust evidence of efficacy, family services for individuals diagnosed as having serious mental illness are of limited availability and drastically underutilized. This underutilization may be due to a mismatch between consumer and family preferences and the services offered. This study is the first systematic report on preferences expressed by consumers with serious mental illness for family involvement.

The study enrolled 232 mental health consumers with serious mental illness who had contact with family but did not have any family regularly involved in their mental health care. Consumers were recruited from outpatient mental health clinics at three large medical centers in two Veterans Integrated Service Networks. Interviews elicited demographic characteristics, treatment preferences regarding family involvement, and perceived benefits and barriers to involvement. Chart diagnoses and measures of symptom severity, family functioning, and contact were collected.

Seventy-eight percent (171 of 219) of the consumers wanted family members to be involved in their care, and many desired involvement through several methods. Consumers were concerned with the impact of involvement on both themselves and their family member. The consumer’s degree of perceived benefit of family involvement significantly predicted the degree of desire for family involvement after analyses controlled for service need (family conflict, family-related quality of life, and symptom severity), enabling factors (family contact and family capacity), demographic variables (age, gender, race, living with family, and marital status), and barriers perceived by the consumer.

The extent of overall support for family involvement in care coupled with the heterogeneity of preferred modes and concerns and anticipated benefits underscore the imperative to offer diverse family services and to elicit consumers’ preferences regarding whether and how to involve their families.