Thanks to medical successes and new treatment options, children and adolescents with rare diseases can now attend school more often playing an important role in their recovery as well as improving their social inclusion. For this reason, it is important for teachers to address the issue and acquire skills in dealing with rare diseases. In this…

There is an increased belief in the benefits of information and communication technologies (ICT) in healthcare, but the perceived benefits of ICT in family caregiver support need to be explored. This qualitative interview study aimed to describe how family caregivers and healthcare staff in COPD care experience ICT. The results showed that both…

Purpose: This study aims to understand the eHealth literacy skills of chronic patients and to explore the relations, patterns between eHealth literacy skills and different factors such as demographics, search strategies and health information sources and to explain their effects on eHealth literacy in Turkey in Izmir in COVID-19 outbreak.…

t(TskBL) is a simulated learning approach in which the focus for students is a real task done by a medical professional. TskBL includes standardized patient encounters and is helpful to provide early clinical exposure. Our study aimed at planning, implementing, and assessing TskBL among first-year medical students and comparing it to the…

Phenylketonuria (PKU) is a rare, but serious, metabolic disease that can cause a variety of neurological, psychological, and academic complications. Fortunately, many individuals with PKU who are identified and treated early can go on to live a relatively normal life. However, PKU does continue to present with a variety of complex underlying…

There is a growing literature that seeks to explore what is 'sensitive' about 'sensitive' research. In order to problematise and interrogate the concept of what may or may not be considered 'sensitive' research, this paper draws on four related projects exploring sex, intimacy and relationships for young people, over 16 years, who have…

Purpose: Children suffering from cancer or cardiovascular disease, who need extended periods of treatment in hospitals, are subjected to multiple hardships apart from the physical implications, for example, experienced isolation and disrupted social and academic development. This has negative effects long after the child's recovery from the…

Portrait therapy entails an art therapist co-creating portraits of patients diagnosed with life-limiting illnesses and exhibiting it in a museum art gallery. A description of portrait therapy practice draws on the portraits, collages, and prose poems of two patients, along with feedback from exhibition visitors and patients' families. For…

I presented the 2019 Hans O. Mauksch address at the American Sociological Association annual meeting in New York City on August 13, 2019. In this address, I explore how sociology faculty perceive their physical bodies in relationship to teaching. After reviewing the literature, I surveyed a national sample of sociology faculty from diverse…

The NIEHS-sponsored "Appalachian Health & Well-Being Community Forum" held in Eastern Kentucky brought various community members together to communicate and establish better coordination of efforts to improve health and address regional environmental issues. The 2-hour forum discussion provided bi-directional feedback about the needs…

Background: Parents of children with profound intellectual and multiple disabilities (PIMD) have extensive care duties. This study describes the phenomenon "parenting a child with PIMD." Method: We conducted in-depth interviews with 25 Dutch parents. A reflective lifeworld research was used. Findings: The essential meaning of the…

Sickle Cell Disease (SCD) is an inherited blood disorder affecting approximately 1 in every 365 African American births. Students with SCD are likely to experience ongoing complications that will interfere with their attendance, functioning at school, and overall daily functioning throughout their lives. This article provides education about SCD…

BME HealthReach is an educational outreach program where undergraduate BME students participate in an out-of-class design thinking course to create and teach interactive STEM activities to K-12 students, where children with chronic illnesses are the primary clients. We detail research that seeks to answer the following: (1) what impact does this…

Aberrant interoceptive accuracy could contribute to the co-occurrence of anxiety and premonitory urge in chronic tic disorders (CTD). If it can be manipulated through intervention, it would offer a transdiagnostic treatment target for tics and anxiety. Interoceptive accuracy was first assessed consistent with previous protocols and then…

Background: University wellness education can have a long-term impact on the health-related knowledge and behaviors of individuals. Moreover, individual perceptions influence the likelihood of participation in health-promoting behaviors. Therefore, understanding college students' health-related priorities and perceptions may increase the…