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Project Summary
The birth of a baby with ambiguous genitalia challenges societal beliefs about gender and normalcy, and is traumatizing and isolating for families. Parents of these children are faced with long-term decisions such as
choosing a sex of rearing, genital and reproductive surgery, and hormonal manipulation that may have great implications for long-term child quality of life and emotional health outcomes. One variable that plays a role in the parents' ability to make these decisions and to feel confident in their decision is that of uncertainty. Parental uncertainty is defined as an experience elicited in situations where the meaning of illness-related events are unclear and outcomes are unpredictable because of a lack of sufficient information or cues.1 Sources of uncertainty include ambiguity concerning the illness, complexity regarding treatment, lack of information regarding the seriousness of illness and prognosis, and unpredictability over the course of the illness. Even though heightened levels of parental uncertainty can affect the parent's own mental health and ability to make medical decisions that will have long-term effects on their child, there are currently no empirically-supported interventions for reducing uncertainty in parents of children with a disorder of sex development (DSD).
The study is guided by the following aims:
Primary Aim 1. To better understand parental uncertainty in the context of having a child with a DSD by identifying specific aspects of the child's diagnosis, treatment, care, and prognosis that are triggering and maintaining elevated levels of uncertainty. To accomplish this, we will access our NIH-funded, 10-hospital consortium to conduct qualitative interviews of parents in both group and individual formats. Content analyses will be conducted to extract pertinent themes and information, which will be used to inform the proposed electronic intervention.
Primary Aim 2. To develop and pilot an internet-delivered uncertainty intervention that will establish effect sizes in reducing parental uncertainty and psychological distress. Validated measures of parental uncertainty, general psychological distress, and posttraumatic stress symptoms will be collected from parents of children with a DSD prior to, immediately after, and three months after participation in the intervention. Establishment of effect sizes will inform the development of a subsequent multi-site, randomized clinical trial of this intervention.
At the end of this project, we will have a developed intervention, specifically tailored to reduce uncertainty in parents of children with a DSD, which can be delivered via the internet,
potentially reaching parents world-wide.
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