Schizophrenia: A Handbook For Families
Public Health Agency of Canada
Published by Health Canada in co-operation with the Schizophrenia Society of Canada
Updated January 2003
Family contributors to this handbook urged that its contents should help families who are new to the illness to deal with some of the fear, sorrow and bewilderment that the contributors themselves had endured when little information about schizophrenia was available. The handbook has been primarily developed, therefore, as a guide for families when early signs indicate that a relative may have schizophrenia, and as a resource for these families when a diagnosis of schizophrenia has been determined. To this end, it has been put together with help from many families with relatives who have schizophrenia. These people were willing to share their experiences in order to offer others practical, common-sense advice on what to do.
They noted that when they discovered that a relative was ill, they were frequently frustrated because medical professionals could not provide them with clear-cut answers. They learned that with schizophrenia definite answers often do not come easily. Families now encountering the illness should know that they have not failed their relative: that a considerable amount of trial and error may be necessary to learn the best way of handling the situations that arise from the illness.
Looking back on their own experiences, contributors to this book expressed a number of wishes:
I Wish I Had
- had more information about the disease
- known that it is not a preventable disease
- understood that it is not simply a matter of confused or troubled thinking, that my relative was not just passing through a difficult phase
- had someone, relative or friend, who would tell me that my family member was not behaving normally
- sought help sooner
- asked more questions
- had more patience
- known that all my horrible feelings of guilt and shame were normal
- known that in real life all families aren't perfect like the Waltons on television, and
- known that I had the right to ask questions and seek help from the health care professions."
In keeping with the preceding list, the families have endeavoured throughout this handbook to provide you with a range of ideas. They caution that not all of these ideas will work for your relative, or be appropriate for your ethnic background and family traditions. And, of course, there are many areas that cannot be covered within the scope of this publication. Therefore, when asked what one piece of advice they would pass on to you, families stressed the importance of belonging to a chapter of the Schizophrenia Society of Canada (SSOC), or to a group associated with la Federation quebecoise des associations des familles et amis de la personne atteinte de maladie mentale in Quebec or to any other self-help group organized by and for families of people with schizophrenia. It is at support group meetings that you will receive information, advice, and understanding. Moreover, families found that as members of SSOC or similar organizations they could deal more effectively with their community and provincial health care systems. They have their own knowledge and experience of the illness, they know their rights, and they are better able to get help for their relatives. One woman stated, "Becoming a member of a support group is a crucial step in coming quickly to knowledge, understanding, and acceptance. The most important factor in coping is feeling that you are not alone, and that the situation is not hopeless."
The health care professionals consulted agreed that there is a lack of practical advice. They felt that they, too, would benefit from the common-sense knowledge now available from the experiences of families. They also agreed about the importance of joining a family support group. As one health care worker stated, "Under current circumstances, people with schizophrenia have very little voice. The nature of the illness makes it difficult for many to join together and lobby for their rights. The support of families and friends, as advocates, is needed to call attention to the issues."
Source and complete handbook: Schizophrenia: A Handbook For Families