Improving Access to Family Support Organizations: A Member Survey of the AMI-Quebec Alliance for the Mentally Ill

Approximately one-half to two-thirds of psychiatric patients who are discharged from the hospital return to their families (1,2). Studies have examined the high burden of care that exists for families of mentally ill persons (3,4) and their negative interactions with the mental health care system (5,6,7). Family support organizations provide support, education, advocacy, and research for mentally ill individuals and their families (8,9).

Despite the benefits that can be obtained from involvement in family support organizations, patients typically experience a long period of illness before family members come into contact with such organizations. In 1991 Grosser and Vine (10) surveyed 1,492 members of the Alliance for the Mentally Ill of New York State. Eighty-five percent of respondents reported that their relative had been sick for at least six years before the respondent joined a support group, and 61 percent reported that their relative had been ill for longer than ten years before they joined. Holden and Lewine (6) observed that mental health professionals are not helpful in directing the families of psychiatric patients to family support organizations.

The Quebec Alliance for the Mentally Ill (AMI-Quebec) is a family support organization affiliated with the National Alliance for the Mentally Ill. A cross-sectional survey of the membership of AMI-Quebec was undertaken to assess the delay in family members' contact with the organization, the reasons for the delay, and possible interventions that could reduce the delay.

Methods

In March 1997 a survey was sent to all members of AMI-Quebec who had a family member with a mental illness. The eight-page questionnaire included 46 multiple-choice questions about the respondent, the ill family member, and services received. Nine questions explored the issue of the delay between the identification of psychiatric illness and the involvement of family members with AMI-Quebec. A phone reminder was used to improve the response rate, and data collection terminated in May 1997.

Results

A total of 556 questionnaires were mailed. Sixty-five could not be delivered due to an inaccurate address, a move, or death. Of the remaining 491 questionnaires, 186 were returned, for a response rate of 38 percent.

The average age of the relative with mental illness was 41 years. A total of 112 of the ill relatives (60 percent) were male. Sixty-three (34 percent) were living with a family member, and in 115 cases (62 percent) the person providing the most care was their mother. The diagnosis of the ill family member was reported as schizophrenia by 104 respondents (56 percent) and bipolar mood disorder by 45 (24 percent). The mean duration of illness was 17 years.

Forty respondents (22 percent) reported having heard of AMI-Quebec by the time of the family member's first contact with psychiatric care. Twenty-eight (15 percent) learned of AMI-Quebec within the first six months, and 82 (44 percent) had not heard of AMI-Quebec within two years of the family member's first contact with psychiatric care. Of the 29 family members whose relative became ill within the past five years, 21 (72 percent) heard of AMI-Quebec within six months of the onset of illness. For the 20 respondents whose relative became ill between six and nine years ago, 11 (55 percent) heard of AMI-Quebec within six months of the onset of illness. This figure was 16 (49 percent) for the 33 respondents whose relative became ill ten to 14 years ago.

Of 174 respondents who answered the question about how they had heard of AMI-Quebec, 17 (10 percent) reported having heard from a psychiatrist, five (3 percent) from another physician, 45 (26 percent) from another mental health care worker, and the remainder from friends or an AMI-Quebec advertisement.

As for involvement with AMI-Quebec, most respondents, 128 of 168 who answered the question (76 percent), reported becoming involved within six months of hearing of the organization, 21 (13 percent) within the first two years, and 19 (11 percent) after more than two years. Fifty-eight respondents described the reasons for the delay. Seventeen (29 percent) stated that the delay was because they did not think the organization would be helpful, six (10 percent) were reluctant to be involved with an association for the mentally ill, and 20 (34 percent) answered that the delay was due to inconvenience such as location, transportation, or time commitment.

Of the 144 members who responded to the question of whether they wished they had become involved with AMI-Quebec sooner, 109 (76 percent) answered affirmatively.

All 186 respondents answered a question about what would have helped them hear of AMI-Quebec sooner. Ninety-four (51 percent) responded "picking up a pamphlet in the emergency room or doctors' waiting area," and 71 (38 percent) answered "a pamphlet sent home with the family member." Ninety-five (51 percent) responded that information about AMI-Quebec from the emergency room psychiatrist or nurse would have helped. Some believed that being contacted spontaneously by AMI-Quebec would have been helpful—56 respondents (30 percent) approved of a phone call, and 46 (25 percent) recommended the AMI-Quebec newsletter.

Discussion

Several sources of bias exist in this study. Involvement in a family support organization may reflect a particular motivation among the sample members. Thus the desire to become involved in such organizations may not be generalizable to all family members of people with mental illness. In addition, the study design is cross-sectional and retrospective, relying on the recall of respondents, which may have been altered by experiences in the intervening period. The response rate of 38 percent is consistent with that found in a similar study (6).

The reported lengthy delay between identification of the family member's illness and the respondent's awareness of AMI-Quebec replicates the findings of an earlier study (6). The low rate of referral by psychiatrists provides quantitative evidence for a subjective observation made previously (10). These results remain meaningful despite methodological shortcomings. Two findings—the desire for earlier involvement with AMI-Quebec and the methods suggested for increasing awareness about the organization—may apply more to the specific population of the survey. Nonetheless, practical suggestions emerged.

To respond to the problems identified, we are initiating a survey of health care professionals to assess referral patterns; we can then plan an awareness program and improve referrals by developing specific tools, such as orientation sessions and an introductory package, for professionals and their patients. Recent trends in mental health care include pressures to decrease expenditures and to reorient attention to community-based treatment. These goals can be achieved in part by improving use of existing community services such as family support organizations.

Conclusions

The survey confirmed previous observations of lengthy delays between identification of mental illness and referral to family support organizations and a low rate of referral by psychiatrists. Families in our survey indicated a desire to have been referred to AMI-Quebec sooner after the onset of illness. Because psychiatrists and other mental health professionals play a pivotal role in encouraging involvement in family support organizations, such referrals need to be made a part of their routine practice. Innovative methods of raising awareness among professionals and recruiting more families to join family support organizations may be necessary.

Acknowledgment

This study was supported by grant 4833-05-95-00179 from the Health Canada New Horizons: Partners in Aging Program.

Dr. Looper is a psychiatry resident at McGill University, Research and Training Building, Room 107, 1033 Pine Avenue West, Montreal, Quebec, Canada, H3A 1A1. Dr. Fielding is director of the day hospital at Allan Memorial Institute in Montreal. Dr. Latimer is research scientist at Douglas Hospital in Verdun, Quebec. Dr. Fielding and Dr. Latimer are also assistant professors in the department of psychiatry at McGill University. Ms. Amir is executive director of the AMI-Quebec Alliance for the Mentally Ill.