How can we build and sustain a system of care to support families, children, and youth when a parent has a serious, chronic, or life-threatening illness? When a parent is diagnosed with a chronic or life-threatening illness, children are reluctant to verbalize their fears and concerns to those closest to them because they don’t want to add to their family’s burdens. Often schools, recreation programs, and other sources of community support are not aware of the problems nor prepared to help the child and family.
Parental illness, whether physical or mental, can stress even the strongest of families. Families frequently have difficulty meeting demands posed by the illness of a parent. They may have limited financial resources, inadequate respite support, limited communication with the education and health care system, and competing work and family commitments. Families become socially isolated at a time when they often need supportive social relationships.
The current service system is fragmented with gaps and overlaps. It is difficult to navigate, and frequently lacks logical and supportive means for coordinating care.
The issue of parental illness was highlighted at Family Re-Union 7: Families and Health, a national family policy meeting moderated by Vice President Gore, in June 1998. In November of that year, a workgroup on parental illness was convened in Washington, DC with support from the Center for Mental Health Services and the National Cancer Institute. This event brought together researchers, clinicians, policy makers, and individuals and families affected by parental illness. A summary of this meeting was presented in the monograph, The Impact of Parent Illness on the Child and Family: Implications for Systems Change, and broadly disseminated.
In 1999, the Center for Mental Health Services asked the Institute for Patient- and Family-Centered Care to plan and convene a follow-up meeting in Baltimore, Maryland to develop a specific plan of action for addressing the issue of parental illness and its impact on children, youth, and families. The core beliefs serving as the foundation for this action plan are:
- Families are the basic social unit of society.
- The illness of a parent can have a profound impact on children and youth—their development, their physical and mental health, and their overall well-being.
- A family-centered system of care, developed, implemented, and evaluated through collaboration with children, youth, and families, is needed to address the parental illness issue.
- Access to information and a range of practical and emotional support and services is essential to families experiencing parental illness.
- Peer support—family-to-family, parent-to-parent, teen-to-teen, and child-to-child—should be an essential element of the system of support available to all families.
- Offering hope and support should be an integral part of the practice of all health professionals, teachers, and others who have direct contact with children and families.
The Institute wishes to express its appreciation to the following individuals for their contributions to the development of this section.
This section of the website was developed with support from Roche.
Judith Katz-Leavy, M.Ed, Senior Policy Analyst, Federal Center for Mental Health Services, Rockville, MD
Gina Tesauro, MSW, Policy Analyst, Office of Cancer Survivorship, Rockville, MD
Joanne Nicholson, Ph.D., Associate Professor of Psychiatry, Associate Director, Center for Mental Health Services Research at the University of Massachusetts Medical School, Worcester, MA and Kate Biebel, M.S., Project Coordinator.