The most important role for providers in helping family members of people with mental health conditions is a preventive one—that is, giving the person with the condition sufficient services and supports to keep the condition (and the family) stable. The family should always be offered supportive family consultation and family education.
The following recommendations represent a variety of responses from family members who’ve participated in NAMI Family-to-Family classes. The participants suggested ways that providers can help specific family members of people affected by a mental health condition.
Ask for input: Many siblings want providers to ask what they know, think and feel about their sister or brother with the mental health condition and to listen to them. Siblings want to be beneficially involved by helping in some way.
Support independence: Siblings need providers to understand and support them when they feel they must step out of their family’s problems. Providers must empathize when they’re torn between moving their own life forward and feeling obligated to help their family.
Address guilt: Siblings’ survival guilt can bring up fears about their own mental well-being and influence many of their life choices—especially as young adults just starting to make major, independent decisions. They need to talk about these feelings and to explore whether their sibling’s condition is casting a shadow on any part of their lives.
Address trauma: Siblings experience long-term effects from the trauma of events they witnessed or things that happened to them when their brother or sister was symptomatic. Siblings who’ve had these experiences may feel hatred and fear about their sibling and want to detach from them. With education and support, the well sibling may understand that the behaviors that traumatized them came out of a medical condition, but it takes time and courage.
Support grief: Many siblings report that providers (and even family members) don’t understand the hugeness of their loss and grief. This may be part of family denial—of parents not wanting to acknowledge that more children in their family are hurt. It may be that people dismiss survivors’ negative feelings as unimportant because “at least” they’ve been lucky enough to survive. Sibling loss is normally intense and can renew at every developmental milestone throughout life. Providers can help siblings with the grieving process at any of these points.
Support peer connections: Many siblings report that they feel invisible in their family after mental illness strikes—that they don’t want to burden their parents further, or that their needs get lost in the intense demands made by their brother or sister. Peer support groups provide a safe and welcome place for well siblings to talk about these issues.
Adult children mourn several losses: of their childhood, of a carefree, stable family structure and of their own young potential. Many children put their own development on hold while they cope with their parent. Others feel troubled by outgrowing a parent, someone they expected to lead the way. Many feel dread about caring for the ill parent as they age. These conflicts and uncertainties need to be treated with empathy and respect
Educate about the condition: Many adult children were told nothing about what was wrong with their parent—even as adults, they know little about their parent’s diagnosis. It’s critical that mental health professionals educate and guide these adult children. They must help them identify illness behaviors and consult with them about decisions the family makes to accommodate the parent.
Validate individual experience: The vast majority of people whose parents have a mental health condition don’t develop one themselves. However, this group has often been portrayed as unavoidably affected by their parent’s “dysfunction.” Each adult child will have their unique story to tell, and shouldn’t be negatively labeled. Providers should help remove this stereotype by validating these adult children’s unique experiences.
Invite vulnerability: Many adult children have conflicting feelings about asking for help or depending on others. Most say that the experience of having a parent with a mental health condition did negatively affect them. Anxiety, feelings of hopelessness, repressed anger, “magical thinking,” feelings of defeat and a habit of being passive can combine to form a persistent depressed mood. However, they appear to be self-sufficient and competent. They rarely let others see the sadness and uncertainty they feel. Providers do an important service when they encourage these adult children to open up about their needs.
Provide support options: Adult children need networks of support outside their family; they need help creating a psychological buffer between themselves and their parent’s behavior. Adult children can be greatly helped by psychotherapy; they may also benefit from support groups and educational and self-help books.
Reach out with full information: Partners say they’ve suffered greatly from service providers’ neglect. They need and want information about their partner’s condition and help coping with it. They want this information to be practical and honest; it should cover topics of illness management, sexuality, single parenting, money management, economic hardship and handling their partner’s unusual behavior.
Assume help is needed: People sometimes assume that “other than the condition,” the family is doing fine. It’s more realistic for providers to assume that the family is not doing fine—that the community may stigmatize them, that the in-laws may blame the well partner, that the children need support, education and assistance, that the partner relationship is suffering, etc.
Make it safe to talk: The partner relationship is the only close family relationship that’s chosen and can be ended by divorce. Therefore, partners will be faced with agonizing uncertainty about how to weigh their own needs against those of their partner with the mental health condition. Partners must be able to confess their ambivalence about staying in the marriage (which is normal) without being made to feel they’re disloyal. Partners feel terrible when a provider tells them to leave the marriage or that it’s their “duty” to stay in it. They need to talk about their loneliness, their isolation and their emotional hardship without fearing that they’ll be judged.
Don’t assign blame: Partners don’t want their single-handed efforts to hold their family together to be misinterpreted as “infantilizing” their partner or causing their partner’s difficulties. Wives, in particular, complain that providers negatively stereotype them as “over-productive” partners who are wrecking their husband’s masculinity.
Encourage a support network: Partners need to be encouraged to build a life outside the home through work and through rewarding social and community activities, which may or may not include the ill partner. Meaningful work and friendships outside the family are great barriers against stress and caregiver burnout. Partners need help identifying and establishing a reliable network of support. Providers should help the partner learn to ask key people for certain things—friendship, compassion, help with the kids, advocacy for services or even help with finances.