15 STANDARDS OF PSYCHOSOCIAL CARE
for Children with Cancer and Their Families
With support from Mattie Miracle Cancer Foundation, a three year long international project, involving 85 health care professionals from 44 institutions across the U.S., Canada, and the Netherlands, to develop evidence based psychosocial standards of care for children with cancer and their families, was completed on December 29th, 2015. The standards were published in a dedicated supplement of Pediatric Blood & Cancer (http://onlinelibrary.wiley.com/doi/10.1002/pbc.v62.S5/issuetoc). It is the largest and most comprehensive compilation of psychosocial standards to date in which 1,217 journal articles were reviewed and appraised for rigor. These historic evidence-based standards define what children with cancer and their families must receive to effectively support their psychosocial needs from the time of diagnosis, through survivorship, or end of life and bereavement care.
Each of the 15 Standards have their own dedicated article published in Pediatric Blood & Cancer, and there is one overview article describing the methodologies used to develop the standards. These are downloadable at http://www.mattiemiracle.com/#!downloadstandards/c1dja.
A discussion on ”The Importance of Psychosocial Support – Childhood Cancer Is a Family Diagnosis” is found in http://www.mattiemiracle.com/#!childhood-cancer-facts/c9j6.
Aims and recommendations for psychosocial care
by SIOP Working Committee on Psychosocial Issues in Pediatric Oncology (1993)
Cure is now possible for the majority of children with cancer. By the year 2000, 1 in 1000 young adults will have been cured of childhood cancer. Most will have good health and normal life expectancy. This improvement in the results of treatment has necessitated a change in emphasis of the care of these patients and their families.
There is an increased need for a multidisciplinary approach to management to include psychosocial support services from the time of diagnosis to ensure maximum quality of life. The provision of adequate information and the development of ongoing support will enable these children to grow and develop in preparation for entry into adult life, and to achieve their full potential.
Our collective experience in recent years has led us to formulate the following guidelines for psychological and social management and support.
Structure of Medical Services, Strategy of Intervention
Psychosocial support is an integral part of the total management of all patients. The responsibility for overall management must remain clearly with a single treating physician. It is important that the treating physician remains the same, for as long as possible, to ensure continuity of care, given the close relationship that develops between doctor and patient.
Management of children with cancer requires the participation of a multidisciplinary team (the treating physician working with consulting specialists, a psychiatrist and/or psychologist, nursing staff, social worker, teachers, recreation specialists and members of other health care disciplines as the need arises). A training oriented to childhood cancer is recommended for all members of the team and participating mental health professionals should ideally have some experience in the management of children with cancer.
An extremely important obligation is for members of the team to reserve time and space for meeting with parents and patients.
Families of affected children face an emotional crisis at the time of diagnosis. From that point on, the illness challenges the relationship between the parents, the relationship among the siblings, and the whole balance of family life. The entire family (parents, patient, siblings, and extended family members) should be helped to understand the illness, each at this or her own level of development, and should be encouraged to accept the need for active treatment and prolonged follow-up. Parents should be helped to behave towards the affected child in the same way as towards healthy siblings. The treatment centre should offer interaction among involved families, stimulate active participation in specific support programs involving healthy children too (e.g. the sibs of the patients) and in activities of healthy peer-groups and further contact with parent support groups.
At their own level of development, children with cancer should be helped to understand their illness and their response to the illness. They must be helped to accept the necessary and often intense treatment and they should be reassured that acute treatment consequences such as pain, or any long-term effects which may occur, can usually be effectively dealt with. The children should be encouraged to look to the future with hope and optimism.
To this end, the children should, whenever possible and at their appropriate level of development, actively participate in programs and other interaction processes aimed at promoting their participation in the decisions concerning their own health care. Medical, psychosocial and social interventions should support the patients’ educational and psychological growth, based on their individual strengths and weaknesses, as appropriate to the stage of their disease.
School and Education
The integration of the child into school is a critical part of psychological and social development. The ultimate goal is the development of the child into an adult, actively participating in the adult world, including work and family life. Teachers should be sensitized to and informed about childhood cancer. The health care team should contact teachers with the permission of patients and parents and the children should be integrated back into their normal school program as soon as possible after diagnosis. In order to promote independence, school staff should avoid giving special privileges and imposing restrictions, except those which are medically indicated. While in the hospital, the child should be encouraged to keep up with schoolwork. If the child must remain at home for medical reasons, special efforts and attention should be made to help the child maintain school performance while at home with, for example, the use of a home teacher.
To facilitate integration into society, all those involved in the care (medical psychological, or educational) of children with cancer should concentrate on preparing them for the highest possible level of employment of which they are capable, rather than fostering overprotection which leads to continuous dependency. Advice should be made available, where practical, regarding career preparation and employment opportunities. Close co-operation and communication with educational and employment establishments should be encouraged.
Health and Social Policies
Policies should be developed that maximize the integration of childhood cancer patients and their families into society. Care should be taken to discourage prejudice on the basis of diagnosis, and to ensure that judgments regarding career, employment and insurability be made on the basis of the current health status of each individual.
It is the responsibility of the health authorities to provide adequate resources so that the pediatric oncologist hematologist can ensure that appropriate psychosocial support services are available for all of the patients under the care of the multidisciplinary team.