Report 2010 Psychosocial Program

In order to help develop the important discipline of psychosocial support in the care of the child/adolescent with cancer, Claudia Lancman Epelman from INCTR Brasil and Doug Ennals, Social Work Consultant to PAX proposed the constitution, in 2010, of an INCTR Working Committee on Psychosocial Issues in Pediatric Oncology to promote a series of initiatives aiming at the integration of psychosocial intervention as a part of the therapeutic strategy in Pediatric Oncology Centers.

One of the initiatives carried out in 2010 was the preparation and distribution of a questionnaire to all INCTR members to gather information about the extent and type of psychosocial services available to children and adolescents with cancer and their families. A total of 1228 members were contacted and requested to complete the on-line survey ( Seventy-five respondents clicked on the link to the survey, but only 32 questionnaires were completed. Fourteen LMIC were represented. The majority of respondents were doctors (69'7'0) followed by nurses and social workers - 6'7'0 respectively. The most common psychosocial issues that impacted patients and families were stress, anxiety and depression, the uncertainty and fear of death, denial and anger, financial burden and stigma of having cancer. There was economic support available to patients and their families such as self-care kits (53'7'0), transportation (44'7'0), food (41'7'0), housing (25'7'0) and clothing (19'7'0). The providers of psychosocial services included social workers, volunteer, spiritual providers, counselors, psychologists, psychiatrists, play therapists and others. The most common psychosocial programs available included individuallfamily counseling followed by palliative care programs, patient support groups, play therapy programs, family support groups, psycho-educational programs, school/education programs. Units tended to have a children's playroom/classroom (66'7'0), family caregiver lounge (47'7'0), family/caregiver sleeping accommodations (31'7'0), and cooking facilities (28'7'0). If funding and resources were available, respondents indicated that an increased number of psychologists/social workers, an expansion of the multi-disciplinary team, the strengthening of bereavement support and the development of training and educational programs would be provided. It is planned to distribute the questionnaire to INCTR members in 2011 and to push for a greater return.

A video illustrating the impact of cancer from time of first symptom through treatment on the life of a child was supported by TUCCA.

The goals for 2011 are to develop documents, recommendations and gUidelines for psychosocial management and support, to invite professionals who may be interested to participate in some collaborative studies related to psychosocial issues in pediatric oncology, and to develop a plan to extend the program for adult cancer patients.

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