Supporting families with parental mental illness
Reprinted from "Parenting" issue of Visions Journal, 2004, 2 (2), p. 4
There was a time when people with mental illness were considered lunatics. Although we may think of this as ancient history, within my lifetime we have come from seeing mental illness only being depicted in the setting of huge institutions in movies like One Flew Over the Cuckoos’ Nest, to an appreciation that mental illness lives among us in many forms.Think for example of Jack Nicholson’s portrayal of are reclusive sufferer of obsessive-compulsive disorder in A s Good As It Gets
Friends and colleagues in child protection tell me there was a time when a parent’s mental illness would mean automatic removal of the children. In a recent survey I conducted of child protection staff, they expressed unanimous desire to understand how to avoid removal and support parents in their fulfillment of their parenting obligation. Between 1940 and 1960, people with mental illness were sterilized because it was believed that they should not be able to generate offspring
In 2001, the government of BC through its Ministries of Health and Children and Family Development (MCFD) and other social agencies published Supporting Families with Parental Mental Illness, a manual built on the assumption that persons with mental illness can parent if the necessary supports are in place.1 As we’ll see later in this edition of Visions, the manual is a guide to community planning, offering basic information on mental illness and material aimed at fostering dialogue about the experience of parental illness from both the parent and offspring perspective. In addition, there is information on how to do ‘advanced planning’ for specific families, and a self-assessment checklist that communities can use to set goals in relation to their sensitivity and response to this issue. That’s a good distance to have come
A good part of the distance has to do with how we think about mental illness and how we’ve moved from seeing mental illness as something that is ‘within’ an individual to viewing it as something that affects the whole family. As an instructor in a graduate program teaching marriage and family therapy, I find it difficult to convey to fresh, young helpers how revolutionary this is. To them, it just makes sense. But if it makes so much sense, why is it so hard to do? Why doesn’t it happen more often?
The story of families and mental illness is contained within the broader cultural story of the development of our modern institutions. In many ways, these modern institutions – for dealing with crime as well as mental illness – took responsibility away from families and communities and rested it with the state (i.e., the government). The state, however, with its equalizing potential can never rival the altruism and care found in close communities and families. Slowly we are learning the function the state can play while allowing communities and families to fulfill the roles they play best in addressing social problems
While the family role was partly sidelined by institutions, the family was also seen as part of the problem by researchers. Perhaps a special opposition was spawned in the treatment of mental illness when early family therapists were associated with ‘blaming’ families for causing mental illness. For example, the schizophrenia research of Gregory Bateson in the 1950s sought a connection between family communication and mental illness. Then of course, studies in other jurisdictions and locally have demonstrated that the majority of parents with serious, persistent mental illness have had their children placed in foster care at some time. The separation of offspring from their parents with mental illness has been the ultimate reflection of past approaches that sought to separate the person with mental illness from their family unit, and saw a parent with mental illness always as ‘a problem.’ The gulf between the individual illness perspective and the family-centred view has done much harm to the natural aspirations of persons with mental illness to parent effectively
Concerns of Parents
When you speak with parents with a mental illness, you quickly learn how desperately they want to fulfill their roles as parents. Similar to any other ill parents, they are beset by a ‘false guilt’ because of the limitations imposed by their illness. Then there is the extra stigma associated with mental illness. If it was cancer or multiple sclerosis, the parent could count on societal sympathy. This isn’t the case when a mental illness prevents someone from fulfilling their parenting as they would wish. In a qualitative study of mothers with mental illness, one wrote: “Thank you very much for letting me participate in this survey. It has helped me lose some of the shame and guilt I carry for being ill and at times unable to cope.”2
There is great promise in initiatives that bring together all of those involved – professionals and parents, community resources and neighbours – to build a community of care around a family with parental mental illness. When they meet regularly enough they begin to anticipate problems, building in the necessary supports for both parents and children. Astute caregivers and neighbours can then know when the family system requires intervention because the parent’s illness is flaring up. Pre-planning helps them know what to do, with the ‘ill’ parent contributing and directing this process when they are well
While initiatives such as this – which in their various forms are known as advanced planning, representation agreements (Ulysses type-agreements), and collaborative integrated case management (ICM) – have helped some parents to feel dignified and supported in their roles as parents, these practices are not widely available.3 Further, where they are, there is often a slippage in treatment integrity, so that the interventions are not implemented as effectively as they should be. Past evidence suggests that parents coping with mental illness, besides having their symptoms to manage,must also contend with stigma, self blame, and the pronounced fear of losing contact with their children if others are let into their family lives. They do not tend to see agents of the government as friendly or sharing their goals. This promotes secrecy, aggravates isolation, and worsens other harmful family dynamics.
Concerns of Protection workers
I recently surveyed child protection social workers in BC’s Fraser Region MCFD and learned that many agonize over the needs of families with parental mental illness. Although sometimes seen as being overly focused on needs of the child, this group (and clearly those in our survey) struggles to view the problem systemically and from a family focus. Child protection workers in their written responses reported they want to support the bonds between parent and child. Yet they fear harmful effects on children left in the care of a sick parent. They are acutely aware of problems with medication compliance and the variable nature of the mental illnesses. They want to understand the impacts of illness on the short and long term functioning of family and child outcomes. They consistently mentioned their desire for greater collaboration with mental health proguest to assist them in playing an informed role with families. They are often frustrated by the issue of confidentiality and the limited communication they receive from the adult mental health system
As one wrote: “We are hardly ever called by mental health professionals.” Protection workers are aware of the suffering of both parent and child, but often don’t know how to build trust with families to reduce the fears about apprehension. A respondent wrote: “I have never received a call from the child of a mentally ill client (because) the children have always lived with the mentally ill parents, so do not find the corresponding behaviourof the unstable, out of the ordinary.” Not only do they want more education on mental illness, but they wish the mental health system was better educated about child welfare. They want to know which psychotropic medications can be sold on the street, and what is the course of bipolar disorder and borderline personality compared to schizophrenia. They don’t want to make life-changing decisions for families without the best information and the support of that family’s community. They want adult mental health professionals to place the same priority on ICM as they do
Concerns of offspring
Although stories of offspring vary, they are often filled with a feeling of loss. Small wonder they have been called “the invisible children.”4 One adult told me that the most powerful memory of his childhood was seeing his mother taken from the home when he was a little boy by men in white coats. The feeling of destitution and helplessness has haunted him since. There was no one there to comfort or explain.
Things are beginning to change for offspring of parents with mental illness. As described later on in this issue, Kids in Control, a psycho educational program for children sponsored by the BC Schizophrenia Society, equips kids with correct information and the experience of knowing they are not alone. Other psycho educational programs with whole families have shown some success. ‘Adult survivor’ groups are another promising initiative that can help offspring heal later in life. Unfortunately, to date these initiatives are mostly small-scale and isolated from each other
The adult mental health system
The introduction of new psychotropic medications and initiatives such as those around early interventions for psychotic illnesses (i.e. schizophrenia, bipolar illness) have instilled a new air of hope. A better understanding of the prevalence and long-term impacts of depression and anxiety have brought mental illness towards the mainstream. Women’s health initiatives have highlighted the importance of parenting among women with mental illness. Natural partnerships with prenatal carers have fostered a focus on the role of patients who parent. There is a growing awareness that much of mental illness, or its effects, can be mitigated. A recent article in the American Psychological Association’s journal, Prevention & Treatment, declared, “Treatment is not Enough: We Must Prevent Major Depression in Women.” Exemplary demonstration projects such as The Invisible Children’s Project in Upper New York State indicate the value of family-focused case management. Treatment of eating disorders, with its strong multi-factored approach, has brought the family to greater prominence in the treatment of mental disorders.
Unfortunately, the mental health system continues to remain the poor cousin among health services. In many places, medical and psycho social models remain in tension. Trained family therapists are seldom employed in the formal mental health service. This is despite a growing evidence base for relationship therapies (e.g. interpersonal therapy) as a robust treatment for depression, particularly with women. My survey of child protection workers reflects the ongoing gap between health and social service providers. Issues such as confidentiality continue to be a barrier to expanded integrated care. As well, communicating takes time, a precious resource in a system with limited capacity.
Public policy considerations
Policy makers need to truly understand that at least two thirds of persons with psychiatric illness will be parents 5 and that the costs to children, parents and the mental health system of not addressing their need from a systemic and family-oriented perspective are enormous. A major problem has been the practice of funding programs based on individual, not family needs.
There are promising initiatives such as the training and community building through the Supporting Families With Parental Mental Illness initiative, but they need to move from the corner to the centre of someone’s desk Prevention groups such as Kids in Control and specialized parenting programs need to move from pilot projects to core priorities. It is heartening to see in the articles contained herein by Dr. Joanne Nicholson (USA) and Vicki Cowling (Australia) that other jurisdictions are wrestling with similar concerns. A comprehensive environmental scan including European and other industrialized countries will no doubt reveal there are some wheels we do not need to re-invent. It would no doubt also reveal that British Columbia can be proud of its initiatives to date
A hopeful way of seeing
It is fitting that family therapy, which once so alienated those affected by mental disorders, could now provide a new paradigm for more helpful actions. The writings of narrative family therapist Michael White and others remind us that persons are more than the predominant stories about them. They say the story of mental illness is a ‘thick’ story that may smother other important stories about family competency.
Here lies the invitation to look for strengths and to tell the stories of mothers and fathers who despite their illness continue to parent effectively. It is the opportunity to clearly see our own societal journey, painfully slow perhaps, from individual illness stories to a broader picture of family and system functioning. Psycho educational programs for families have demonstrated that with the right information, families can accomplish a great deal. Communities working together with advanced planning, ICM, family support, family therapy and a range of other services can keep parents out of the hospital and help children stay with their own families. We’ve come a long way, but there is a distance yet to go
About the Author
Dr Lee, a registered psychologist, is the Mental Health Service Quality Analyst for Frasier Region, Ministry of Children and Family Development. Rob has served on the provincial working group on families with mental health for over 5 years and was involved developing Kids in Control, a psycho-educational group for children whose parents have mental illness. He is also an instructor of the graduate program in counselling physiology at Trinity Western University where he teaches marriage and family therapy.
Ministries of Health and Children and family Development. (2001) Supporting families with parental mental illness
Benjamin, Lynn R. et.al (1998). The parenting experiences of mothers with associative disorders. Journal of Martial and Family Therapy, 24(3),337-354
Representative Agreement Resource Center (2004). What it a representation agreement? See www.rarc.ca
Hinden, Beth et.al. (2002). The invisible childrens project: A family-centered intervention for parents with mental illness. Center for Mental Health Services, Office of Policy, Planning and Administration. See www.Paretingwell.org/resources.htm
Nicholson, Joanne et.al. (2002). The prevalence of parenthood in adults with mental illness: Implications for state and federal policy makers, programs and providers. See www.parentingwell.org/resources.htm