Understanding Adult Participant and Parent Empowerment Prior to Evaluation in the Undiagnosed Diseases Network

The burden of living with an undiagnosed condition is high and includes physical and emotional suffering, frustrations, and uncertainty. For patients and families experiencing these stressors, higher levels of empowerment may be associated with better outcomes. Thus, it is important to understand the experiences of patients with undiagnosed conditions and their families affected by undiagnosed conditions in order to identify strategies for fostering empowerment. In this study, we used the Genetic Counseling Outcome Scale (GCOS-24) to assess levels of empowerment and support group participation in 35 adult participants and 67 parents of child participants in the Undiagnosed Diseases Network (UDN) prior to their UDN in-person evaluation. Our results revealed significantly lower empowerment scores on the GCOS-24 in adult participants compared to parents of child participants [t(100)?=???3.01, p?=?0.003, average difference?=???11.12, 95% CI (??3.78, ??18.46)] and no significant association between support group participation and empowerment scores. The majority of participants (84.3%, 86/102) are not currently participating in any support groups, and participation rates were not significantly different for adult participants and parents of child participants (11.4 vs. 19.7%, respectively, FE p?=?0.40). Open-ended responses provided additional insight into support group participation, the challenges of living with undiagnosed conditions, and positive coping strategies. Future research will evaluate the extent to which empowerment scores change as participation in the UDN unfolds.     

A Brief Alcohol Intervention During Inpatient Psychiatric Hospitalization for Suicidal Adolescents

Alcohol use and suicide-related thoughts and behaviors are common in psychiatrically hospitalized adolescents and each problem can exacerbate the other. Despite knowledge about the functional relationship between alcohol use and suicide-related thoughts and behaviors, inpatient psychiatric units only cursorily address alcohol use because suicide risk is considered primary. In this paper we provide theoretical and empirical rationale for the inclusion of brief motivational interventions for alcohol use in inpatient treatment settings for suicidal adolescents. We give a case example of the brief intervention in practice, including when and how to use specific techniques. Following the case example, we discuss the flexibility of this intervention and how it can be adapted for adolescents with varying risk profiles. We conclude with recommendations for future research, including the development and testing of technology-based boosters following hospital discharge.     

Decline in life satisfaction in old age: longitudinal evidence for links to distance-to-death

Using 12-year longitudinal data from deceased participants of the Berlin Aging Study (N = 414; age 70-103 years, at first occasion; M = 87 years, SD = 8.13), the authors examined whether and how old and very old individuals exhibit terminal decline in reported life satisfaction at the end of life. Relative to age-related decline, mortality-related decline (i.e., distance-to-death) accounted for more variance in interindividual differences in life satisfaction change and revealed steeper average rates of decline, by a factor of 2. By applying change-point growth models, the authors identified a point, about 4 years before death, at which decline showed a two-fold increase in steepness relative to the preterminal phase. For the oldest old (85+ years), a threefold increase was observed. Established mortality predictors, including sex, comorbidities, dementia, and cognition, accounted for only small portions of interindividual differences in mortality-related change in life satisfaction. The authors conclude that late-life changes in subjective well-being are related to mechanisms predicting death and suggest routes for further inquiry.     

Age and Body Satisfaction Predict Diet Adherence in Adolescents with Inflammatory Bowel Disease

The aim of the current study was to determine whether age and body satisfaction predict dietary adherence in adolescents with Inflammatory Bowel Disease (IBD), and whether older females are less adherent than younger males and females. Forty-four participants aged 10–21 with IBD were recruited. Participants provided informed consent and demographics. Body satisfaction was measured by a questionnaire and a task in which participants selected their current and ideal body image out of silhouettes depicting bodies ranging from underweight to obese. Adherence was measured by marking a 100 mm visual analog scale, the 1-week completion of a dietary log, and a questionnaire evaluating coping strategies used for overcoming obstacles to dietary adherence. Age was related to dietary adherence, with younger children being more likely to adhere. Participants more satisfied with their body reported better dietary adherence. Findings remained consistent across multiple measures of body satisfaction and adherence. Healthcare providers and parents should be informed of these findings in order to improve adherence.     

Communicating HIV/AIDS Through African American Churches in North Carolina: Implications and Recommendations for HIV/AIDS Faith-Based Programs

This study explores HIV/AIDS communication strategies among church leaders at predominately African American churches in a metropolitan city and surrounding areas in North Carolina. The church leaders contacted for the study are members of an interfaith-based HIV/AIDS program. The researchers used semi-standardized interviews to explore how church leaders address HIV/AIDS in the church. The findings indicate that the seven church leaders who participated in the study use a variety of communication channels to disseminate HIV/AIDS information for congregants and their surrounding communities, which include both interpersonal and mass media.