As the clinic social worker, I meet patients and families where they are at in the process of managing complicated genetic conditions that are often accompanied by a staggering amount of different thoughts and feelings. I strive to help patients and families process those feelings and their hospital experience by creating a space where they can talk openly in a non-judgmental environment. I aim to facilitate adjustment and coping to these conditions by providing brief therapeutic intervention, information from a psychosocial perspective and referrals to strategic community resources.
Sometimes extra advocacy is needed with some of those resources such as in the school setting or with state developmental therapy providers. It is important to create a dialogue and partnership with families as they navigate initially receiving a diagnosis, incorporate treatment into their lifestyles as the child grows and eventually work towards transition to adult health care. I hope to increase adjustment to the challenges created by caring for a child with a medical condition as well as provide helpful tools to cope with and overcome those challenges along the way.