It was 25 years ago when Bette Stewart’s husband was diagnosed with a mental illness. “I felt angry and alone, like my life was coming apart at the seams,” she recalls. “I asked the psychiatrist for help. I know now that if (my husband) was an alcoholic, I would have been referred to Al-Anon (an organization that offers help and support to family members of problem drinkers). But the doctor knew of no place to send me.” Fortunately, Stewart found her way to a support network run by the National Alliance on Mental Illness (NAMI), an organization that serves individuals and families impacted by mental illness via education programs and political advocacy. Today, she coordinates NAMI support groups throughout Maryland.
“These families (who have a loved one with a mental illness) are dealing with trauma. We’ve lost a person whom we cared so much about. That person is very different now. It’s like losing a part of yourself,” Stewart explains. “We don’t let people grieve that publicly. Families often have bad experiences with therapists who don’t take the time to hear all sides of the story.”
Families face substantial adjustments when a loved one is diagnosed with a mental disorder, be it getting accustomed to the side effects of medication or the lifestyle changes needed to maintain emotional stability. Yet many family members find themselves cut out of treatment plans, particularly if the diagnosed individual is an adult. As a result, the families of those who are mentally ill may feel isolated and alone as they struggle to make sense of the changes. In such situations, therapy or support groups may be beneficial, but many in the counseling profession are unaware of how to reach beyond their clients to those family members in need.
“I think it’s a training issue with clinicians. They aren’t trained to work with families of adults (who have been diagnosed with a mental illness),” Stewart says. “They’ll think, ‘My client doesn’t give me permission to speak to his family.’ But if clinicians are trained with the belief that families are beneficial to the (mental health care) consumer, part of the counseling goals can be connected to the family. Once the provider is out of the picture, that family is still there.”
Joyce Burland experienced this challenge in her own life. Her sister was diagnosed with schizophrenia in the 1960s, and her daughter was diagnosed with the same condition in 1980. “We were given no professional advice in 1960, and nothing had changed in 1980. I thought, ‘This can’t go on.’” So Burland, a psychologist, joined NAMI and wrote the curriculum for a course that would help family members find information and support. NAMI now offers the free peer-education program, Family-to-Family, in all 50 states. Burland currently serves as director of NAMI Education Training and Peer Support programs.
“I was convinced that family members who had lived the experience could be very good teachers,” Burland says from her Santa Fe, N.M, home. “We estimate that 225,000 people have taken the 12-week, free course to learn about what is happening to the person they love — what kind of illness they have, what the lived experience is and how to be an effective and active advocate for their family member in treatment. These are things you do automatically if you get diabetes, but it’s not automatic in the mental health field.”
An educational endeavor
NAMI’s Family-to-Family program takes a largely educational approach to supporting family members. The groups, led by former participants who have been trained as presenters, feature information sharing on a variety of topics, including diagnosis, medications, current research, community resources and mental health care advocacy. Group members also hear about the lived experience of those with mental illness and are prepared to face the possibility of crises and relapse scenarios. The program also covers self-care awareness and coping strategies for the group members themselves.
“The incidence of mental illness is very traumatic for the family,” Burland says. “You could see someone who is healthy in May be psychotic by December. We try to help families see that this is as traumatic as a flood or an earthquake.”
Opening themselves to therapy or a support group may not be easy for family members. Some have soured on the thought of therapy or counseling after trying to secure care for their loved ones. Describing the support group community as a “secret society,” Burland explains that it may take years for certain individuals to willingly go to a meeting where they might be identified as having a family member with a mental illness.
Stewart adds that mental health care providers may have little understanding of the complicated support needs of clients’ family members. “Some of the assumptions are that (mental health care) consumers don’t have families, or that families are part of the problem or that families aren’t going to be interested,” she says.
Stewart works as a training specialist at the University of Maryland School of Medicine’s Evidence-Based Practice Center in Baltimore. She has been involved in a study measuring the efficacy of the Family-to-Family program that reflects the lack of awareness in the provider community. Her hope is that more clinicians will consider how helpful an informed family can be to a loved one’s overall progress.
“By involving families in treatment, everyone benefits. The more families understand what’s going on, the easier it is to respond in a more appropriate, compassionate and understanding way,” Stewart says. “Sometimes families feel extremely isolated, and it’s beneficial to know that other families experience the same situations. Together, families can learn skills to work more effectively with their family member.”
She mentions the example of one Family-to-Family participant, a man in his 80s who had been locking horns with his mentally ill son for more than 20 years. When the son turned up every holiday in dirty clothes or with body odor, a fight would inevitably result. But the course provided the father with some insight into the challenges of personal hygiene for someone with his son’s diagnosis.
“During a class he sobbed, ‘Why didn’t someone tell me this before? We could have avoided so many miserable times.’ Later, he described the first happy holiday dinner in years because he understood that the best his son could do was to be there on time. They could deal with the fact that he had dirty clothes, whereas before, (the father) would just get angry. People are never too old to learn something that will benefit them,” Stewart says.
The counselor connection
When NAMI was established 31 years ago, its original purpose was to make up for the lack of support and information offered to families by the medical community. As such, some NAMI members carried a reasonable amount of guardedness concerning providers, who for years had created a perception that clients’ mental illnesses were generally connected to poor parenting and childhood abuse.
It’s no surprise that when family members felt marginalized and blamed for their loved ones’ struggles, they were wary of interacting with the professional community. But with a better understanding of the biological factors involved in mental illness, some mental health advocates suggest that today’s providers can do much to repair the divisiveness of the past by taking on family support initiatives. Among the benefits to counselors are introducing their traditional services to a new audience and deepening their understanding of the impact of mental illness on the family.
Betsey Neely began looking for mental health resources when the youngest of her three adopted children was showing signs of conduct disorder in school. An Atlanta attorney and single mother at the time, Neely found a local NAMI chapter and took part in Burland’s Family-to-Family course.
“It was the most helpful thing I found anywhere for dealing with a child with mental illness problems,” Neely says. “After that, I was trained to teach Family-to-Family. I taught that for several cycles and really saw how much the family members appreciated and needed the support. When I finally retired from being a lawyer, I decided to go to graduate school for professional counseling.”
While pursuing her degree, Neely, an American Counseling Association member, devised a support group for her practicum at a community mental health center. “I saw there was no help for the families, and I got reenergized,” says Neely, who currently runs a consulting practice that helps clinicians learn how to be better witnesses in legal proceedings.
“I think the time is right now to bring providers into this education movement. There are educators and providers who would be willing to cooperate with NAMI as a family advocacy group, to bring the best of both worlds together,” says Neely, who adds that the waiting lists to join some advocacy-related support groups can be long. “We just don’t have enough volunteers to offer as many (support groups) as are needed, and clinicians can be trained by NAMI and other groups to really understand members’ needs.” Specifically, NAMI’s Provider Education course and a similar program offered by the Depression and Bipolar Support Alliance (DBSA) both feature the perspective of the “mental health consumer” and teach non-blaming ways of reaching out to families and clients.
“I would not say that providers can always do a better job (of leading support groups), because unless you can make the experience useful and relevant to the family that’s suffering, all the education in the world gets you nowhere,” Neely says. “But I do think providers could do an excellent job assuaging the guilt feelings and helping families keep balance in their own lives.” She adds that trained counselors can understand group processing in ways that peer educators may not, thus allowing counselors to help move the sessions toward more productive outcomes.
Likewise, Jessica Swope, a psychology associate with Psych Ed Coaches in Alexandria, Va., believes her professional training lends itself to attending to subtle group dynamics. She currently facilitates a free monthly support group for parents of children diagnosed with attention-deficit/hyperactivity disorder through CHADD (Children and Adults with Attention-Deficit/Hyperactivity Disorder).
“As therapists, we have the basic therapeutic training in empathy and listening skills — being able to distill what’s being said, getting to the core of it and feeding that back. Having someone skilled in that way in the room can help move the conversation forward so there can be room for more emotional processing,” Swope says. “I am trained to be attentive to all members’ needs, to be tuned into what’s happening with the group members who are talking, as well as those who are not talking. You are able to take the temperature of the group as a whole and steer the conversation in response to that.”
“A trained therapist who doesn’t have the experience of a family member with that particular issue can be useful because that one person is in the room not thinking about things through the lens of their own experience. Therapists are able to provide a sounding board where people can really be heard,” she notes.
Swope also appreciates the value of camaraderie within the group. “That’s the nice thing about having parents dealing with these issues at all stages. The leaders listen for misinformation, and we might tweak or make additional suggestions, but there’s a lot of learning and information sharing taking place.”
Neely emphasizes the importance of showing families they are not alone in their struggles. “Parenting was the hardest thing I’ve ever done — much more difficult than any employment I’ve ever had as an attorney. There is so much personal trauma that comes from that and guilt that gets in the way. I was a single mother with three kids acting out all the time, and I think there are just a lot of people in that dilemma.”
Empathy, not revenue
This type of group work is probably not the space for counselors to make financial gains; these families are often struggling to make ends meet already as they fund their loved ones’ care. Swope says providing pro bono support services fulfills her ethical requirement to be of service to the community.
Highlighting the distinction between support groups such as the one she runs and therapy groups, which have more psychological aims, she notes, “These are people who are spending a lot already on finding the right type of care for their loved ones. It’s important for people to have a place to go where they can get resources (and) support, have their batteries recharged (and) where they don’t feel like it’s a drain in any way.”
Stewart echoes this thought. “Many families don’t have money to put toward treatment and therapy. Sometimes they just need a basic understanding of what’s going on, what happened to my son or daughter. In this difficult financial time, I hope more providers will think of referring people out to what’s available in their own communities. But if providers are interested in learning ways to really work professionally with families, rather than traditional ‘family therapy,’ I hope they will consider learning about family psychoeducation approaches.”
Indeed, psychoeducation can be the key to reaching this population. Counselors may find members of support groups are more interested in learning about their loved ones’ illnesses and how they can help, while less interested — at least initially — in processing the emotional toll of the diagnosis on the family. At the same time, firsthand knowledge of how mental illnesses impact families can deepen both a counselor’s empathy and case conceptualization skills. Provider education programs are offered through a variety of organizations, including NAMI, DBSA and the Substance Abuse and Mental Health Services Administration.
Swope has also found that spending time listening to support group members describing their experiences has enriched her individual work with AD/HD children and adults. “I’m fairly new to working with this population, and my experience has largely been through my clients. This group work is a good way to fill out the picture for me as a clinician,” she says. “I think (support group work) would be useful for anyone looking to develop a niche practice. It’s a service but also a way of deepening your knowledge as a practitioner. It’s very useful for me to learn from the parents.”
Stacy Notaras Murphy is a licensed professional counselor practicing in Washington, D.C. Contact her at firstname.lastname@example.org.
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