'It is very hard': Treatment for childhood Lymphoma from the parents' perspective

Abstract

This article presents the findings of a five-year longitudinal study exploring the treatment experience for families coping with leukemia and lymphoma to address the dearth of psycho-social research documenting the experience of childhood lymphoma patients. The participants noted that the predominant differences for lymphoma families, as compared with other childhood hematological conditions, center around the issues of, firstly, the intensity of treatment. While the treatment protocol is comparatively shorter, the parents perceive it to be more arduous due to the intense and continuous nature of treatment. Important issues noted in this regard were the negative impact of the toxicity of the chemotherapeutic drugs, the stress associated with the invasiveness of accessing the child's veins for blood samples and to inject medications and the experience of undergoing lumbar punctures. Secondly, the relatively rare occurrence of pediatric lymphoma was reported to result in feelings of isolation from other families with children with a hematological malignancy and the unavailability of information and support services focusing specifically on childhood lymphoma. Thirdly, the relatively high curative success rate of lymphomas can have the effect that the parents feel that their angst is somewhat trivialized by other parents at the hospital. Recommendations include the importance of the availability of the full range of supportive care services, attention to the difficult emotional states the child patients experience, clinical strategies that lessen the trauma of treatment, and the use of positive role models by way of contact with or information of children who have successfully completed treatment.