Background: Legacy making has been the focus of recent literature; however, few studies examine how legacy making affects bereaved parents. Objective: To better understand legacy making's effect on bereaved parents, this study examined (1) the presentation of legacy making to parents, (2) parent satisfaction, and (3) parent utilization of the project. Design: Eko CORE (Eko Devices, Inc., Berkeley, CA), a digital stethoscope that generates a phonocardiogram, a graphical representation of S1 and S2 heart sounds, was used to record children's heartbeats as they approached end of life. The heartbeat was then overlaid to a song or voice recording or kept as a stand-alone file. An artistic embellishment of the phonocardiogram was also created. Parents were surveyed about their experience with the Music Therapy Heart Sounds (MTHS) program. Twelve parents completed the survey. Setting/subjects: Tertiary care children's hospital. The subjects were bereaved parents. Measurements: Five-question survey. Institutional Review Board review exempt. Results: All respondents would recommend the MTHS program to other families experiencing end-of-life decision making. Forty-two percent (N = 5) heard about the program from pediatric palliative physicians, and 50% (N = 6) heard about it from therapists such as music or child life. The respondents varied in how often they utilized their child's heartbeat recordings: 25% (N = 3) viewed or listened monthly, 33% (N = 4) not at all, 17% (N = 2) almost weekly, 17% less than monthly, and 8% (N = 1) daily. Conclusion: The MTHS program is an easy-to-implement and cost-effective way to perform legacy making that bereaved parents recommend for other families.
The present study examined alexithymia, drinking motives and alcohol expectancies in a nonclinical sample of 100 young adults aged 18-30 years. Those with alexithymia scored higher on measures of coping motives for drinking and affective change expectancies than those without alexithymia. The findings suggest that people with alexithymia are more likely to drink to cope, but also to experience feelings of intensified negative mood after drinking, compared to people without alexithymia even when both groups show similar levels of drinking.
Having difficult conversations with sick children or with healthy siblings of sick children can be anxiety provoking for providers, even more so if the patient is not expected to survive their illness. Children are incredibly perceptive and will sense when something significant changes. When they ask unexpected questions, they deserve honest explanations, as they inevitably are making up their own story, which may or may not be scarier than reality. Although difficult, with advanced preparation, proceeding at the child’s pace with slow, concrete explanations and a focus on the most common developmental fears, these conversations can be held successfully and can aid in building a trusting relationship between the family and the provider.
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