Patients' experiences with methylcobalamin injections in amyotrophic lateral sclerosis.

BACKGROUND AND OBJECTIVES: Amyotrophic lateral sclerosis (ALS) is a progressive motor neuron disease with no definitive treatment. Vitamin B12 is not a Food and Drug Administration-approved treatment in the United States, although it has been prescribed off-label as ultra-high-dose methylcobalamin, which has been shown to be safe and effective in slowing functional decline in patients with ALS. This study evaluates the impact of Vitamin B12 injections on the quality of life of five patients. METHODS: Semi-structured interviews were conducted with the patients and caregivers. The data was carefully read, coded, and organized into themes and sub-themes by two independent researchers. RESULTS: The study found four themes and 11 subthemes from the data, including initial circumstances, administration of the injection, subjective experience with Vitamin B12, and outcomes and expectations. All participants recognized some benefits from Vitamin B12 injections, specifically increased energy, reduced fatigue, and improved balance. However, some patients had difficulty monitoring its specific effect due to the progressive nature of the disease. DISCUSSION: The flexibility offered by this intervention is beneficial for patients with declining mobility and strength who wish to adapt their treatment to their schedule. This work is a modest call to fill the existing gap in the literature and push for more randomized controlled trials investigating and clarifying the effects of Vitamin B12 injections on disease progression, muscle function, and quality of life in a small but diverse pool of patients with ALS.

The Impact of COVID-19 on Families With Pediatric Muscular Dystrophy Patients.

The coronavirus disease 2019 (COVID-19) pandemic resulted in unprecedented changes in daily activities and healthcare services. In the United States, stay-at-home orders and social distancing measures were put, and school closures impacted many students. The psychological impact of the COVID-19 pandemic has been shown to have wide-ranging and long-term effects. With school closures and limitations in in-person visits and provider care, we hypothesized that the patients with pediatric muscular dystrophies and neuromuscular conditions were more vulnerable to the restriction posed by this pandemic. This survey-based study examined the psychosocial impact of this pandemic on pediatric patients with neuromuscular disorders and caregiver burden through chart review and self-reports via survey administration using a validated tool (COVID-19 Exposure and Family Impact Scales {CEFIS}). The majority of families reported that they had a stay-at-home order (91.7%), schools/childcare centers were closed (87.5%), their children's education was disrupted (83.3%), and they were unable to visit or care for a family member (58.3%). Parents/caregivers felt that the COVID-19 pandemic made parenting a little bit worse (mean = 2.6 ± 0.96) and made it more difficult to care for the elderly or those with disabilities in the family (mean = 2.6 ± 0.95) and for their child with a neuromuscular disability (mean = 2.6 ± 0.91). Our data highlights the significant impact of the COVID-19 pandemic on the lives of families and caregivers of pediatric patients with muscular dystrophies.

Applying Lessons Learned from the COVID-19 Pandemic to Future Threats to the Perinatal Care System.

INTRODUCTION: Health care systems will continue to face unpredictable challenges related to climate change. The COVID-19 pandemic tested the ability of perinatal care systems to respond to extreme disruption. Many childbearing people in the United States opted out of the mainstream choice of hospital birth during the pandemic, leading to a 19.5% increase in community birth between 2019 and 2020. The aim of the study was to understand the experiences and priorities of childbearing people as they sought to preserve a safe and satisfying birth during the time of extreme health care disruption caused by the pandemic. METHODS: This exploratory qualitative study recruited participants from a sample of respondents to a national-scope web-based survey that explored experiences of pregnancy and birth during the COVID-19 pandemic. Maximal variation sampling was used to invite survey respondents who had considered a variety of birth setting, perinatal care provider, and care model options to participate in individual interviews. A conventional content analysis approach was used with coding categories derived directly from the transcribed interviews. RESULTS: Interviews were conducted with 18 individuals. Results were reported around 4 domains: (1) respect and autonomy in decision-making, (2) high-quality care, (3) safety, and (4) risk assessment and informed choice. Respect and autonomy varied by birth setting and perinatal care provider type. Quality of care and safety were described in relational and physical terms. Childbearing people prioritized alignment with their personal philosophies toward birth as they weighed safety. Although levels of stress and fear were elevated, many felt empowered by the sudden opportunity to consider new options. DISCUSSION: Disaster preparedness and health system strengthening should address the importance childbearing people place on the relational aspects of care, need for options in decision-making, timely and accurate information sharing, and opportunity for a range of safe and supported birth settings. Mechanisms are needed to build system-level changes that respond to the self-expressed needs and priorities of childbearing people.

Birth during the Covid-19 pandemic: What childbearing people in the United States needed to achieve a positive birth experience.

BACKGROUND: The COVID pandemic exposed many inadequacies in the maternity care system in the United States. Maternity care protocols put in place during this crisis often did not include input from childbearing people or follow prepandemic guidelines for high-quality care. Departure from standard maternity care practices led to unfavorable and traumatic experiences for childbearing people. This study aimed to identify what childbearing people needed to achieve a positive birth experience during the pandemic. METHODS: This mixed-methods, cross-sectional study was conducted among individuals who gave birth during the COVID pandemic from 3/1/2020 to 11/1/2020. Participants were sampled via a Web-based questionnaire that was distributed nationally. Descriptive and bivariate statistics were analyzed. Thematic and content analyses of qualitative data were based on narrative information provided by participants. Qualitative and convergent quantitative data were reported. RESULTS: Participants (n = 707) from 46 states and the District of Columbia completed the questionnaire with 394 contributing qualitative data about their experiences. Qualitative findings reflected women's priorities for (a) the option of community birth, (b) access to midwives, (c) the right to an advocate at birth, and (d) the need for transparent and affirming communication. Quantitative data reinforced these findings. Participants with a midwife provider felt significantly better informed. Those who gave birth in a community setting (at home or in a freestanding birth center) also reported significantly higher satisfaction and felt better informed. Participants of color (BIPOC) were significantly less satisfied and more stressed while pregnant and giving birth during the pandemic. CONCLUSIONS: High-quality maternity care places childbearing people at the center of care. Prioritizing the needs of childbearing people, in COVID times or otherwise, is critical for improving their experiences and delivering efficacious and safe care.

Protecting the Public's Health Through Successful Reentry for Sex Offender After Incarceration.

This paper describes the post-incarceration reintegration experiences of military veterans convicted of sex offenses and identify potential interventions to ease reintegration for this population. Participants were a convenience sample of 14 veterans who were on sex offender (SO) registries and 21 community stakeholders involved in supporting persons during re-entry. Subjects were identified purposively and through snowball sampling, in Massachusetts. We employed semi-structured qualitative interviews of participants, followed by analysis including process mapping to identify barrier and facilitation points. We used both a grounded thematic approach and a priori codes, guided by the Behavioral Model for Vulnerable Populations. We found re-entry barriers include older age, stigma, lack of social support, inadequate information about sexual offense levels, limited housing options and access to mental health treatment to reduce sexual impulses, and re-entry information tailored to SOs. Re-entry facilitators include access to SO treatment, knowledge about services, self-efficacy, ability to self-advocate, and social support. Interventions to aid successful re-entry include pre-release counseling and classes tailored to SO needs, re-entry planning including housing resources, sexual deviance treatment, and referral to legal counseling to assist with altering assigned SO level. Specific needs and resources unique to veterans should be integrated into reentry plans. Convicted SOs often lack information and assistance to prepare for life after release, putting them at increased risk of homelessness, emotional difficulties, and financial hardship. Failure to recognize the unique needs of this population, and to leverage resources, creates a public health risk as it increases the likelihood that SOs will recidivate. Veterans who are SOs have unique resources available to them through the Veterans Administration such as SO treatment and peer-support specialists. Nevertheless there are additional steps that could be beneficial, such as timely provision of information, creating more opportunities for treatment, and providing more housing options.