Perspectives of genetic counseling supervisors regarding genetic counseling students' attainment of practice-based competencies in clinical care through remote supervision.

There are limited studies regarding the attainment of the Accreditation Council for Genetic Counseling Practice-Based Competencies by genetic counseling students who complete clinical rotations in an in-person setting versus in a remote setting that incudes telephone and/or video patient encounters. This study explored the perceptions of 17 patient-facing genetic counselors who had served as supervisors for genetic counseling students regarding student attainment of practice-based competencies in in-person compared to remote rotations. Participants were recruited through an American Board of Genetic Counseling eblast and were required to have at least 2 years of clinical experience and experience providing genetic counseling supervision for at least one in-person rotation and one remote rotation. Four focus groups were created comprising genetic counselors from various practice disciplines. Discussion focused on potential differences and similarities in supervisor perceptions of student attainment of each clinical practice-based competency, and whether there were any concerns about students being able to attain each competency in remote rotations. Overall, participants discussed that genetic counseling students' attainment of clinical competencies through remote rotations was comparable to in-person rotations; however, 15 themes were identified illustrating differences reported by participants in how they observed these skills being performed by students in in-person versus remote clinical settings. The findings of this study highlight important considerations when developing a remote rotation, as well as ways in which certain clinical skills may be further enhanced through a combination of both in-person and remote clinical experiences. A noted limitation of remote rotations is that students have less of an opportunity to interact with other providers, and so may require other opportunities for interprofessionalism and to understand their role as part of a larger organization. Further study is required to elucidate differences between telephone and video clinics, as well as potential differences pertaining to various specialty areas of practice.

Understanding patient, caregiver, and healthcare provider perspectives of the management of long-chain fatty acid oxidation disorders.

Long-chain fatty acid oxidation disorders (LC-FAODs) are a group of rare, inherited, metabolic disorders that can lead to a wide range of symptoms that predominantly affect organ systems with high energy needs, such as the heart, liver, skeletal muscle, and nervous system. Clinical management primarily consists of close attention to and monitoring of diet and activity and avoidance of prolonged fasting. In addition, patients and caregivers must be alert for signs of life-threatening metabolic decompensation. As a result, LC-FAODs can have significant and wide-ranging impacts on the lives of patients and their caregivers. This article describes the effects of LC-FAODs at different life stages and in the context of the North American healthcare system from the perspective of a group of patients, caregivers, and healthcare providers (n = 6). We explain how challenges and needs change throughout life. Following an early diagnosis, an adjustment phase occurs during which caregivers may feel overwhelmed by their new roles and deeply concerned for their children's futures. As children grow, they become more aware of the differences between themselves and their peers, and with increasing independence comes more responsibility for managing their own condition. Major life events, such as new employment and moving house, pose challenges for people of all ages. In addition, it may be difficult to find and connect with qualified and experienced healthcare providers; navigate the health insurance system; and educate and align primary, specialist, and emergency care providers. We propose several strategies to improve the care of patients with LC-FAODs, such as educating local healthcare teams, improving trust between patients/caregivers and healthcare providers, and raising awareness of the challenges faced by patients and caregivers across the different life stages.

Living with long-chain fatty acid oxidation disorders from the point of view of patient, caregiver, and healthcare providers. What is a long-chain fatty acid oxidation disorder? Long-chain fatty acid oxidation disorders (or LC-FAODs for short) are rare health conditions in which the body cannot use certain types of fats for energy.People with LC-FAODs may have many symptoms. The symptoms mainly affect the muscles, heart, nerves, and liver.LC-FAODs are managed by closely watching what is eaten and when, and how much activity is done. This can be very stressful.Looking out for signs of serious health problems and working out which healthcare team to see and when can also be worrying.For this reason, LC-FAODs can have an impact on the mental health of people living with LC-FAODs and their caregivers. What is this article about? We describe how LC-FAODs affect people at different times in their lives.We write from our point of view as patients, caregivers, and healthcare providers in the United States.We explain how challenges and needs change over time. Initially, parents may find it hard to adjust to caring for a child with an LC-FAOD. They may also be very worried about their child.As people grow older, they must learn to manage their condition on their own.They also need to adjust to major life changes such as moving house and starting a new job.We also talk about how it can be hard to find doctors who know about LC-FAODs because the conditions are so rare.We suggest ways to improve care for people with LC-FAODs and their families, for example: Getting healthcare teams to help each other learn about LC-FAODs by sharing knowledge with each otherHelping people learn about the challenges faced by people with LC-FAODsImproving the trust between patients and healthcare providers.