APOSW 40+… Years Young
as told by Past-President Kate Shafer at the 30th Annual Conference in Toronto in May 2006.
APOSW began in 1976. Six social workers working with children with cancer found each other and met together in Philadelphia to discuss common issues and offer support to one another. We can only imagine the sense of isolation they must have felt back then, no APOSW, no listserv, no body of literature to guide their practice. In addition, most of the children those social workers knew died of their disease. If we use ALL as a benchmark diagnosis, since it was and is the most frequent diagnosis and the one with the longest history of cooperative group study, in 1972 only about 20% of children with leukemia treated on study were surviving 10 years. By 1977 the number had improved to 60% of children surviving 10 years. These were the best outcomes in the treatment of children with cancer. Most other diagnoses in 1976 faired much worse and many of them still do. These numbers tell us something about childhood cancer in the 70’s but they do not give us any information about the quality of survivorship, late effects, how children died or how families coped. Thirty years ago many children were never told they had cancer. The procedures the children endured came with little explanation, preparation or palliation. There were no central lines, there was no EMLA or anti emetics or so many of the things we take for granted today that make the journey a little easier. Families suffered not just a lack of information and support but also a profound sense of guilt and shame. Parents were routinely not allowed to stay overnight in the hospital with their children. Thirty years ago it was common for families not to tell anyone that their child had cancer and to exclude siblings in this most difficult family circumstance. Many siblings grew up not understanding what had happened to their brother or sister.
The original six social workers who met in 1976 recognized that in order for things to improve for children and families, that they had to survive in the field and if they were to survive they needed a way to support each other, to share their knowledge and experience, to create a body of literature and to be the leaders in defining new ways to help children with cancer. Since 1976 there have been 15 APOSW presidents who have helped advance our specialty.
The APOSW conference brochures, dating back to the second gathering of pediatric oncology social workers in 1978 provides an archive of our work. What becomes clear is that these early pediatric oncology members created the envelope of psychosocial care of children and families and we have been pushing its edges for thirty years, changing with the times and creating new approaches as we identify new needs. Each of the last thirty years has been critical to the development of our profession. These are the things we have brought into clinical settings. We have a rich tradition.
Almost every conference has offered at least one session on group work. There have been presentations on groups for parents, for fathers, for siblings (1981), time limited and open ended, bereavement support, adolescent groups (1981) and more recently, teleconference support groups.
While others on the hospital team focused on the experience of the child/patient, social workers considered the whole family (1978).
The recognition of the importance for children with cancer to enjoy “normal” childhood activities led us to develop camp programs and to quantify their value. We have been part of camps for patients, for young adults, for siblings, for whole families, Outward Bound camp programs and programs for bereaved families. Special interest camp programs have become part of the standard of care for children and families.
Pain and Palliative Care and Complementary Medicine interventions:
Guided imagery and hypnosis were among the first techniques social workers used to improve the treatment experience to relieve the pain, anxiety and trauma of treatment and were first presented by APOSW members in 1980.
While we were defining the clinical aspects of pediatric oncology social work we were simultaneously building a model professional organization. Pediatric oncology social workers took the lead in recognizing that working with cancer and particularly children with cancer is a unique professional sub-specialty. In order to address our professional educational and clinical needs, a small group of social workers set out in the late 70’s to codify our unique professional identity.
In 1977 the second meeting and first pediatric oncology social work professional conference took place in Bethesda, MD. Twenty four social workers paid $15 each to attend. APOSW was formalized as a 501 (c) 6, non profit membership organization and officers were elected during this meeting. The first president of APOSW was Antoinette Pieroni. ‘Toni’ was a true pioneer in the field. She worked with Dr. Sidney Farber in Boston and was the first social worker hired at the Children’s Cancer Research Institute in the Children’s Hospital. Toni published her first article, Role of the Social Worker in a Children’s Cancer Clinic in 1967 (PEDIATRICS Vol. 40 No. 3 September 1967, pp. 534-536). Incorporation of APOSW was completed in August of 1978 and By Laws were written and adopted that year.
Other topic areas noted from APOSW conference brochures:
• School and community re-entry (1978)
• Collaborative practice and social work role on the health care team (1978)
• Social worker as social and policy advocate (1978)
• Self care and care of the “team” (1980)
• Survivorship and late effects (1981)
• Spirituality (1981)
• Cultural competence and diversity (1982)
• End of life care (1983)
• Ethics (1984)
As membership in the organization grew, new ways of providing professional information and support were implemented. In 1980 the first APOSW newsletter was published. In 1991 the first conference seminar specifically for new workers was offered. This session has been a standard feature of every conference since. Also in 1991 APOSW was able to offer the first Houston Tyler Rothschild scholarship to members in need of financial support to attend the conference. This scholarship is a tribute to one of APOSW’s past presidents, Lynda Walker. Lynda Walker so inspired her social work intern, Joyce Rothschild, that when Joyce’s grandson Houston Tyler died of Neuroblastoma, she started a scholarship for APOSW members in his name. Over the years the scholarship has been able to support an average of nine or ten social workers each year to come to the APOSW annual conference. Sadly, Joyce Rothschild, who believed in and supported our work for years, died several years ago. Joyce’s memory and the memory of her grandson Houston remain alive through APOSW’s continued commitment to providing financial support to our members to attend the annual conference.
In 1997 APOSW wrote and adopted Standards of Practice to provide a foundational document of our specialty. Each new member of APOSW receives a copy of this document. In 1999, responding to the growing numbers in the organization and increased availability of computers in practice settings, APOSW started our listserv which, daily, provides our members with clinical support, program and resource information. In 2000 APOSW created a Members website.
When I joined the APOSW Board of Directors in 1997 there emerged two new missions for the organization. In addition to our mission of enhancing clinical practice there was recognition that we could and should make our mark in the public policy arena, and that social work held a unique body of knowledge that, through research, could contribute to a broader understanding of the psychosocial impact of a cancer diagnosis on children and their families and improved medical and psychosocial outcomes.
The first discussion of public policy came in 1987 when the conference keynote address was titled “Public Policy and Advocacy: Issues for Pediatric Oncology Practice. Ten years passed before APOSW as an organization truly took its place in the arena of Public Policy.
Since then APOSW has participated in C-Change (formerly called the National Dialogue on Cancer), a coalition of top leaders in oncology and public policy, founded by former President George Bush and First Lady Barbara Bush, whose mission is “to eliminate cancer as a public health problem at the earliest possible time”. APOPSW was represented at the American Cancer Society’s two National Summits on Childhood Cancer in 1999 and 2000 and we continue to participate in the Alliance for Childhood Cancer, the coalition of professional and grassroots organizations that grew out of the recommendations of the ACS National Summits. Each of these National groups benefits from the unique perspective of pediatric oncology social work. I feel fortunate to have an opportunity to use my pediatric social work training and clinical experience in meetings with Members of Congress in advancing legislation aimed at increased federal funding for pediatric oncology research.
Pediatric oncology social workers have been doing original research for some time and through published journal articles and book chapters have created the body of literature that informs our practice today. In 1997 the APOSW Board made the decision that social work as a specialty should become integrated in the biobehavioral research efforts of the Children’s Oncology Group. COG became an entity in 2000 when the four North American pediatric clinical trials groups joined together to form one cooperative group. Our members have been involved with COG since its inception. We have attended the group meetings, we were asked to help with the development of the CureSearch, COG website, authoring many of the article now on the site, we have had a poster accepted at the COG nursing forum, and continue to be involved in committees and task forces of the group. APOSW members have sat on the Spirituality Task Force, the Palliative Care Committee, the Late Effects Task Force, the Psychology Committee’s School re-entry sub group, the Adolescent Young Adult Committee and Survivorship Transitions Task Force, the Bioethics Committee and more. And while we are formalizing our research through participation in COG, we have known for more than thirty years that pediatric oncology research cannot only be about morbidity and mortality. All the things that pediatric oncology social workers have known and done for thirty years that address quality of life and survivorship, care at the end of life, interventions aimed at reducing or relieving pain and symptoms of distress, the programs we create to normalize and integrate children with cancer in their communities, discussions and strategies related to access and treatment adherence, all basic elements of our practice are now being incorporated into the strategic plan of COG research. We have really been the leaders in this critical realm of pediatric oncology treatment and research.
Through the incredible professional work of APOSW members we will continue to make our mark in clinical practice, in public policy and in research on behalf of all the children and families we have known and will know in the future.