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(Abst. 3.325), 2014

PRELIMINARY OVERVIEW OF SOCIAL STRESSORS AND SOCIAL WORK SUPPORT OF PATIENTS AND CAREGIVERS IN THE KETOGENIC DIET PROGRAM AT BOSTON CHILDREN'S HOSPITAL
Authors: Chris Ryan, Foley Chris, Karen Costas, Stacey Tarrant, Pixley Lora, Phillip Pearl and Ann Bergin
Content: Rationale: The ketogenic diet is an effective therapy for children with refractory epilepsy, yet poses unique stressors on participants and caregivers. Psychosocial stressors may complicate diet compliance and experience for patients and families. It is important to recognize these factors when considering the ketogenic diet as adjunctive treatment. Social work support is a critical part of the ketogenic diet team at Boston Children's Hospital (BCH). The social worker provides psychosocial assessments of families considering the ketogenic diet and support for participating families. This preliminary, retrospective study describes the stressors of patient population seen for initial consultation with the ketogenic diet program at BCH and the services provided by the social worker in support of this population. Methods: Provider statistics were reviewed utilizing the social work department statistical database and the hospital record system. Records of one-hundred twenty four (124) patients attending the ketogenic diet program for initial consultation were reviewed over a period of two years. Data regarding contact by social worker, nature of stressors, and social work interventions were collected. Results: Stressors included: financial (n=47), parental stress/discord/divorce (n=35), problems with insurance (n=15), behavioral (n=14), language/cultural barriers (n=11), access to community/school services (n=16), other (n=23). Social work interventions included: financial/housing/transportation support, connection with support groups, referrals to: behavioral health supports, legal, and insurance services. Conclusions: A variety of stressors were experienced by patients and their families in this program, and a correspondingly wide range of support was provided by the social worker. The significance of these findings point to the need for future prospective studies regarding the impact of these stressors on diet participation and compliance is highlighted as well as the need to evaluate the effect of social work support on patient/family experience, compliance and diet treatment success.