Examining perceived stigma of children with newly-diagnosed epilepsy and their caregivers over a two-year period.

The purpose of this study was to examine the following: 1) the course of perceived epilepsy-related stigma among children newly diagnosed with epilepsy (n=39) and their caregivers (n=97) over a two-year period, 2) the influence of seizure absence/presence on children and caregivers' perception of epilepsy-related stigma, and 3) the congruence of child and caregiver perception of child epilepsy-related stigma. Participants completed a measure of perceived epilepsy-related stigma at three time points, and seizure status was collected at the final time point. Results indicated that both caregivers (t(1,76)=-2.57, p<.01) and children with epilepsy (t(1,29)=-3.37, p<.01) reported decreasing epilepsy-related stigma from diagnosis to two years postdiagnosis. No significant differences were found in caregiver and child reports of perceived stigma for children experiencing seizures compared with children who have been seizure-free for the past year. Results revealed poor caregiver-child agreement of perceived epilepsy-related stigma at all three time points. These data suggest that while children with epilepsy initially perceive epilepsy-related stigma at diagnosis, their perception of stigma decreases over time. Having a better understanding of the course of epilepsy-related stigma provides clinicians with information regarding critical times to support families with stigma reduction interventions.

Parental perspectives of children born with cleft lip and/or palate: a qualitative assessment of suggestions for healthcare improvements and interventions.

OBJECTIVE: To assess parental perspectives on effective interventions and to summarize parents' suggestions for health care professionals to improve the care provided to their children born with cleft lip and/or palate. DESIGN: Qualitative interviews. SETTING: Comprehensive craniofacial center at a Midwest pediatric hospital. PARTICIPANTS: Seventeen parents of children under the age of 1 who were born with CL/P. RESULTS: Interventions that parents identified as effective included repetition of information, showing pictures of other children (before and after surgery), and anticipatory guidance about surgeries and their child's development. Despite the high level of satisfaction, parents expressed a desire for health care professionals to use more written and visual information, to have more contact with other parents of children born with clefts, and for health care professionals outside the Craniofacial Center to be more knowledgeable about CL/P. CONCLUSIONS: Although parents of children with CL/P were for the most part satisfied with their children's care, the parents who were interviewed for this study suggested attainable changes that may result in more constructive and positive involvement of parents as integral members of the craniofacial team.

A comparison of two group-delivered social skills programs for young children with autism.

A social skills group intervention was developed and evaluated for young children with autism. Twenty-five 4- to 6-year-old (diagnosed) children were assigned to one of two kinds of social skills groups: the direct teaching group or the play activities group. The direct teaching group used a video-modeling format to teach play and social skills over the course of the intervention, while the play activities group engaged in unstructured play during the sessions. Groups met for 5 weeks, three times per week, 1 h each time. Data were derived and coded from videotapes of pre- and post-treatment unstructured play sessions. Findings indicated that while members of both groups increased prosocial behaviors, the direct teaching group made more gains in social skills.

Predictors of retention among HIV/hemophilia health care professionals.

Health care professionals working with individuals with chronic medical illness, especially those infected with the Human Immunodeficiency Virus (HIV), may be at risk for burnout and departure due to various job stresses such as the death of patients and social stigma. Factors that prevent burnout and employee attrition are seldom studied. Two hundred thirteen staff (doctors, nurses and mental health workers) at a representative sample of Hemophilia Treatment Centers (HTC) completed instruments to measure Burnout (Maslach Burnout Inventory), and perceived job stresses and satisfaction (job tasks, interactions with colleagues and patient care). The staff were surveyed again after two years and their job status determined after 4 years. After 4 years, 35% of the staff had left the field of Hemophilia/HIV care. Univariate tests found that retention was significantly associated with initial job satisfaction, being married and low levels of stress with colleagues. Burnout, as measured by the Maslach Burnout Inventory, at baseline, was unrelated to job retention over 4 years. An adjusted multiple logistic regression of all significant variables found that colleague support was most related to retention (OR=2.8, CI=1.49,5.1). We conclude that attrition of highly trained staff is a significant issue for patients and HTCs. These data suggest the important role that a well-functioning team can have in buffering the inevitable stresses associated with HIV care. Mental Health professionals have considerable expertise in addressing these issues.