Publications (5)7.36 Total impact
Conference Paper: How Varying Stakeholders View DSD: Major Differences![Show abstract] [Hide abstract]
ABSTRACT: Purpose: Disorders of Sexual Development (DSD) are a diverse and complex group of conditions managed by providers from different disciplines. Management has evolved considerably in recent years, in part as a consequence of concerns expressed by some former patients and advocacy groups. Because the delivery of care reflects an interaction among all those involved, it is important to understand the perceptions of the major stakeholder groups. Little is known about how different medical stakeholders prioritize the concerns of these patients and little systematic research has been conducted with patients/families to identify issues that are critical to them. Methods: We conducted a series of focus groups and individual interviews with providers involved in the care of patients with DSD, as well as parents and representatives of patient advocacy organizations. In-person and telephone focus groups were performed with Pediatric Urologists (n=7), Pediatric Endocrinologists (n=10), Mental Health Providers with DSD-specific experience (n=5), Advocates (n=4) and Parents of DSD-affected children (newborn to 6 yrs)(n=11) to identify the key health related quality of life issues for children and families with DSD. Focus groups and interviews were transcribed verbatim, followed by content analysis to identify categories and themes in the content. Coded stakeholder group transcripts were then categorized and frequencies of items within and across categories compared across groups. Results: Stakeholder groups varied widely in their identification of important issues. This table illustrates the variability in frequency with which respondents identified these selected issues as important. Selected Concerns Peds Urol Peds Endo Mental Health Advocates Parents Uncertain Diagnosis 1 1 4 3 5 Overwhelmed at Diagnosis 2 3 0 3 5 Exams 4 0 2 4 1 Voiding/changing diapers 7 0 2 6 2 Unable to void standing 4 1 3 2 0 Childcare 7 0 1 4 2 Family disagreement on gender 0 2 4 0 0 Communication with providers 2 1 0 14 5 Remembering medications 0 0 2 3 7 Social difficulties 0 0 0 2 2 Pediatric Urologists expressed concerns regarding voiding and childcare most frequently. Patient advocates identified communication as the central issue, and parents most frequently mentioned worries about the diagnosis, understanding the diagnosis, and remembering medications. None of the groups mentioned child emotional functioning/social difficulties among their top concerns. Conclusion: We identified substantial variability across stakeholder groups in their reporting of key issues and concerns for young children with DSD and their families. These differences should be considered when counseling families and planning treatment. The differing perspectives of healthcare provider groups also reinforces the recommendation that patients with DSD be cared for in the context of well-integrated interdisciplinary teams.
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ABSTRACT: OBJECTIVE: This study evaluates predictors of both general and context-specific parenting stress in a cross-sectional sample of hearing parents of young deaf and hearing children. DESIGN: Participants were 181 children who were deaf and 92 children with normal hearing. Perceived parenting stress was measured using both general and context-specific measures. Predictors of parenting stress included parent-reported and observed child behavior problems and language delays. RESULTS: After controlling for maternal education and family income, parents of deaf children reported more context-specific but not general parenting stress than parents of hearing children. Both parent-reported and observed behavior problems were higher in the deaf group compared to the hearing group. Children's hearing status related to child behavior problems by way of oral language delays. Furthermore, hearing status related to parenting stress by way of language delays and child behavior difficulties. CONCLUSIONS: Context-specific measures of parenting stress reflect unique challenges of this population. Both language delays and child behavior problems are associated with increased parenting stress. Identification of specific stressors related to parenting a deaf child helps to inform the development of early interventions.
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ABSTRACT: The aims of this study were to examine the development of visual attention in deaf and hearing infants and toddlers, and assess whether improvements in visual attention were observed in the deaf sample after 12 months of cochlear implantation. A novel puppet task, based on a measure of attention developed with normally hearing infants, was administered to 88 deaf and 42 normal-hearing children at three time points: baseline, six and 12 months post-implantation for the deaf sample. At baseline, deaf children demonstrated significantly more inattentive looks during the puppet skits than hearing children, and these looks were of longer duration, confirming the results of prior studies which have documented deficits in visual attention in deaf children. Longitudinal analyses showed significant decreases in the frequency of inattentive looks for both groups, with a significant decrease in the duration of inattentive looks only for the cochlear implant group. The largest decrease in duration of off-task looks occurred at six months post-implantation, indicating that improvements occurred rapidly after restoration of auditory input. These results provided support for the ‘division of labor’ hypothesis which suggests that deaf children with no access or limited access to sound must monitor their environment visually, making it difficult for them to focus and attend to specific tasks. Cochlear implantation appeared to alter the developmental trajectory of visual attention in a positive manner. The clinical implications of visual attention for the development of early language, reading and social skills are discussed.
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ABSTRACT: Numerous studies have demonstrated that patients with chronic illnesses are at an increased risk for depression, with serious direct and indirect consequences for health outcomes. The few studies examining rates of depression in patients with cystic fibrosis (CF) or parent caregivers have found clinically significant elevations. Given the importance of identifying and treating symptoms of depression, the purpose of this review was to highlight recent data on the prevalence and impact of depression in CF patients and to propose recommendations for screening and treatment. Recent studies in CF have revealed higher rates of depression in children, adolescents, adults, and parent caregivers than in healthy populations. Evidence also suggests that depression has negative effects on treatment adherence, family functioning, and health-related quality of life. Briefly, well validated screening tools for depression are available but are not currently utilized in routine CF care. Effective psychological and pharmacological interventions are available to treat depression, but have not yet been evaluated in patients with CF. Depression is a significant risk factor for the effective management of CF. Screening and treatment of depression in CF centers is recommended and holds promise for improving social, emotional, and physical health outcomes.
University of Miami
كورال غيبلز، فلوريدا, Florida, United States
- Department of Psychology