69
Developing a Bereavement Follow-up Program for Families of Children Who Die of Cancer
Cynthia A. Stutzer, RN, MS &dquo;Parental loss of a child is unlike any other loss. The grief of parents is particularly severe, complicated, and long lasting, with major and unparalleled symptom fluctuations over time&dquo;.’ Recognizing the special needs of parents whose child has died of cancer, a bereavement follow-up program was developed at British Columbia’s Children’s Hospital. The initial program was based on personal observation and published literature, including research. After obtaining administrative&dquo;support, the core team, consisting of a clinical nurse specialist (CNS) and two social workers, discussed the formation of the program including who would be following individual families, frequency of contacts, documentation of contacts, who would be responsible for administration of the program, and financial considerations. In the 3 years since its inception, the program has been revised and expanded as further needs have been identified. Currently, 83 families have been followed. The head nurse, assistant head nurse, and several staff nurses have become involved as well. The CNS is responsible for coordinating the program. She keeps a rotating file indicating contact dates and sends reminders to team members. She also sends a sympathy card to the family on behalf of the inpatient and outpatient oncology units. At least one person, usually the one who will be following the family, attends the child’s funeral if possible, as a representative of the hospital. A social worker sends a packet of written information, including pamphlets on grief, to the family soon after the death. Contacts with the family are made via telephone or by mail and recorded on a bereavement follow-up form. Christmas cards and information about handling the holidays are sent as well. Parents may come back to the hospital as often as they want. Many parents want to know the results of the autopsy, if one has been performed, and arrangements are made to meet with the physician and a staff member. A copy of the report is available to the parents: The response from families has been very positive. No family has ever refused follow-up, or indicated dissatisfaction with the contacts. Most of the families have expressed their appreciation of the followup. Initially, follow-up continued through the first year after the child’s death. In the past 2 years, feedback indicated that a further year of follow-up would be beneficial. Since the program has expanded to include some staff nurses, special mentoring by the CNS has also been incorporated into the program. Future directions include documenting the unique paths families have followed in dealing with their grief, developing a more formalized follow-up format of open-ended questions, and developing a training program for interested staff members. Families who experience the loss of a child have many intense needs. It is important for caregivers to be able to respond to these special needs and provide follow-up. Involvement and responsibility does not end at the time of death. ’
Reference 1. Rando T: Parental Loss of
a
Child. Illinois, Research Press, 1986
From British Columbia Children’s Hospital, Vancouver, British Columbia, Canada. © 1991 of Pediatric Oncology Nurses.
sociation
Downloaded from jpo.sagepub.com at SIMON FRASER LIBRARY on May 31, 2015
by As-
Developing a Bereavement Follow-up Program for Families of Children Who Die of Cancer
Cynthia A. Stutzer, RN, MS &dquo;Parental loss of a child is unlike any other loss. The grief of parents is particularly severe, complicated, and long lasting, with major and unparalleled symptom fluctuations over time&dquo;.’ Recognizing the special needs of parents whose child has died of cancer, a bereavement follow-up program was developed at British Columbia’s Children’s Hospital. The initial program was based on personal observation and published literature, including research. After obtaining administrative&dquo;support, the core team, consisting of a clinical nurse specialist (CNS) and two social workers, discussed the formation of the program including who would be following individual families, frequency of contacts, documentation of contacts, who would be responsible for administration of the program, and financial considerations. In the 3 years since its inception, the program has been revised and expanded as further needs have been identified. Currently, 83 families have been followed. The head nurse, assistant head nurse, and several staff nurses have become involved as well. The CNS is responsible for coordinating the program. She keeps a rotating file indicating contact dates and sends reminders to team members. She also sends a sympathy card to the family on behalf of the inpatient and outpatient oncology units. At least one person, usually the one who will be following the family, attends the child’s funeral if possible, as a representative of the hospital. A social worker sends a packet of written information, including pamphlets on grief, to the family soon after the death. Contacts with the family are made via telephone or by mail and recorded on a bereavement follow-up form. Christmas cards and information about handling the holidays are sent as well. Parents may come back to the hospital as often as they want. Many parents want to know the results of the autopsy, if one has been performed, and arrangements are made to meet with the physician and a staff member. A copy of the report is available to the parents: The response from families has been very positive. No family has ever refused follow-up, or indicated dissatisfaction with the contacts. Most of the families have expressed their appreciation of the followup. Initially, follow-up continued through the first year after the child’s death. In the past 2 years, feedback indicated that a further year of follow-up would be beneficial. Since the program has expanded to include some staff nurses, special mentoring by the CNS has also been incorporated into the program. Future directions include documenting the unique paths families have followed in dealing with their grief, developing a more formalized follow-up format of open-ended questions, and developing a training program for interested staff members. Families who experience the loss of a child have many intense needs. It is important for caregivers to be able to respond to these special needs and provide follow-up. Involvement and responsibility does not end at the time of death. ’
Reference 1. Rando T: Parental Loss of
a
Child. Illinois, Research Press, 1986
From British Columbia Children’s Hospital, Vancouver, British Columbia, Canada. © 1991 of Pediatric Oncology Nurses.
sociation
Downloaded from jpo.sagepub.com at SIMON FRASER LIBRARY on May 31, 2015
by As-
