"We're stronger as a family": Family experiences and relationships in an adapted physical activity camp.

Adapted recreation programs involving the entire family may offer ways to enhance relationships in families with a child living with a disability because they enable participating together in new and potentially empowering experiences. This study examined family members' perspectives on their lived experiences with their relationships within their family and how they perceived they were affected by their participation in an adapted summer camp for families with a child living with a disability. We conducted a collective case study with five families who participated in a week-long camp. A focus group was conducted with each family and analyzed using reflexive thematic analysis. Participation in the camp impacted family relationships by reducing isolation for mothers; alleviating stress and anxiety which helped families bond; providing shared experience which led to mutual understanding, communication, and support; improving independence and confidence of the child living with a disability; facilitating sibling bonding and parent comfort with giving siblings more responsibility; and enhancing families' confidence to participate in family activities beyond the camp. These findings elucidate how participation in this type of program can impact relationships in families that include a child living with a disability and inform future program design.

"We're a lot closer, we talk more": family experiences and relationships following child's participation in an adapted physical activity camp.

PURPOSE: Children and adolescents with developmental challenges may rely on their parents for assistance with everyday tasks to a greater extent than typically developing children. The objective of this study was to examine family members' perspectives regarding family relationships related to participation in an adapted summer camp for children and adolescents living with a disability. MATERIALS AND METHODS: A collective case study was conducted with eleven families who had a child living with a disability who participated in an adapted physical activity (PA) summer camp. A focus group was conducted with each family and thematically analyzed. RESULTS: Families experienced changes in perspectives and pride surrounding adapted PA, more family conversations about disability, less parental worry, more independence of the child living with a disability, and enhanced family bonds through PA. The children who participated in the camp saw impacts on their self-confidence and independence. COVID-19-related program suspension was associated with frustration, worry, and strained family relationships. CONCLUSIONS: These findings elucidate how participation in adapted PA for children and youth with disabilities can impact family relationships. Future interventions allow for space for family interactions and create opportunity for children and adolescents with disabilities to be independent.

Practitioners could make sure they have resources to recommend and be aware of programs that are available for this population.Practitioners could talk to families about benefits of recreation programs for both children and families in terms of benefits for children and family relationships and parental stress.Knowing the potential benefits to the family as a whole may impact parents' decisions about their child participating in recreation programs.Practitioners could talk to families about benefits of physical activity participation in terms of experiencing independence.Understanding potential benefits regarding independence may give children living with a disability a better understanding of how recreation programs may impact their lives.

Robot-Assisted Gait Training with Trexo Home: Users, Usage and Initial Impacts.

Robotic gait training has the potential to improve secondary health conditions for people with severe neurological impairment. The purpose of this study was to describe who is using the Trexo robotic gait trainer, how much training is achieved in the home and community, and what impacts are observed after the initial month of use. In this prospective observational single-cohort study, parent-reported questionnaires were collected pre- and post-training. Of the 70 participants, the median age was 7 years (range 2 to 24), 83% had CP, and 95% did not walk for mobility. Users trained 2-5 times/week. After the initial month, families reported a significant reduction in sleep disturbance (p = 0.0066). Changes in bowel function, positive affect, and physical activity were not statistically significant. These findings suggest that families with children who have significant mobility impairments can use a robotic gait trainer frequently in a community setting and that sleep significantly improves within the first month of use. This intervention holds promise as a novel strategy to impact multi-modal impairments for this population. Future work should include an experimental study design over a longer training period to begin to understand the relationship between training volume and its full potential.

'This sickness is not hospital sickness': a qualitative study of the evil eye as a source of neonatal illness in Ghana.

Previous research has described the evil eye as a source of illness for pregnant women and their newborns. This study sought to explore the perceptions of the evil eye among mothers whose newborns had experienced a life-threatening complication across three regions of Ghana. As part of a larger, quantitative study, trained research assistants identified pregnant and newly delivered women (and their newborns) who had survived a life-threatening complication at three tertiary care hospitals in southern Ghana to participate in open-ended, qualitative interviews about their experiences in March-August 2015. All interviews were audio-recorded and transcribed verbatim into English and analysis using the constant comparative method of theme generation. A total of 37 mothers were interviewed, 20 about neonatal illnesses and 17 about maternal illnesses. Six of the 20 mothers interviewed about their newborn's illnesses spoke at length about the evil eye being a potential cause of newborn illness. The evil eye was described in a variety of terms, but commonalities included a person looking at a pregnant woman, her newborn baby, the baby's clothes and even the mother's food, causing harm, even unintentionally. Prevention required mothers covering themselves while pregnant and keeping the baby away from others until it was old enough to ward off the evil eye. Treatment required traditional medicine, yet some indicated that allopathic medicine could help. The evil eye appears to serve a social control mechanism, encouraging pregnant women to dress modestly, stay indoors as much as possible and behave appropriately. The evil eye is a pervasive, universally understood phenomenon across three regions of Ghana, even amongst a hospitalized population receiving allopathic health care for life-threatening complications of childbirth. Understanding the role of the evil eye in newborn illness attribution is important for clinicians, researchers and programmatic staff to effectively address barriers to care seeking.

'I am still confused as to what caused the problem': Perceptions of mothers on communication regarding newborn illness and death in Northern Ghana.

Neonatal morbidity and mortality remain a significant challenge in Ghana. Given the relationship between care-seeking and understanding of illness, this study aimed to explore mothers' perceptions of the cause of illness and/or death in Northern Ghana. All neonatal deaths and near-misses (babies who survived a life-threatening complication) in 2015 and 2016 were identified through a community - and facility-based surveillance system. Mothers of the deceased or ill infants participated in open narrative qualitative interviews. Narratives that included discussion of whether the mother understood what caused the baby's illness or death were analysed. Interviews with 155 mothers included discussion of their perception of the cause of newborn illness or death. Of the 155 interviews, 108 interviews involved mothers whose babies died, and 47 interviews involved mothers whose newborns survived a life-threatening illness, a neonatal 'near-miss'. Very few expressed a clear understanding of the cause of death or illness. Those mothers who did not understand were either not told or did not understand the cause of illness or death. Newborn health outcomes may be improved by increased maternal awareness and understanding of neonatal illnesses. Future interventions need to address communication issues that impair mothers' understanding, facilitate recognition of danger signs, and prompt timely care-seeking.

"We call them miracle babies": How health care providers understand neonatal near-misses at three teaching hospitals in Ghana.

Neonatal mortality is a significant problem in many low-resource countries, yet for every death there are many more newborns who suffer a life-threatening complication but survive. These "near-misses" are not well defined, nor are they well understood. This study sought to explore how health care providers at three tertiary care centers in Ghana (each with neonatal intensive care units (NICUs)) understand the term "near-miss." Eighteen providers from the NICUs at three teaching hospitals in Ghana (Korle Bu Teaching Hospital in Accra, Komfo Anokye Teaching Hospital in Kumasi, and Cape Coast Teaching Hospital in Cape Coast) were interviewed in depth regarding their perceptions of neonatal morbidity, mortality, and survival. Near the end of the interview, they were specifically asked what they understood the term "near-miss" to mean. Participants included nurses and physicians at various levels and with varying years of practice (mean years of practice = 9.33, mean years in NICU = 3.66). Results indicate that the concept of "near-misses" is not universally understood, and providers differ on whether a baby is a near-miss or not. Providers disagreed on the utility of a near-miss classification for clinical practice, with some suggesting it would be helpful to draw their attention to those at highest risk of dying, with others suggesting that the acuity of illness in a NICU means any baby could become a 'near-miss' at any moment. Further efforts are needed to standardize the definitions of neonatal near-misses, including developing criteria that are able to be assessed in a low-resource setting. In addition, further research is warranted to determine the practical implications of using a near miss tool in the process of providing care in a resource-limited setting and whether it might be best reserved as a retrospective indicator of overall quality of care provided.

Variability in metagenomic samples from the Puget Sound: Relationship to temporal and anthropogenic impacts.

Whole-metagenome sequencing (WMS) has emerged as a powerful tool to assess potential public health risks in marine environments by measuring changes in microbial community structure and function in uncultured bacteria. In addition to monitoring public health risks such as antibiotic resistance determinants, it is essential to measure predictors of microbial variation in order to identify natural versus anthropogenic factors as well as to evaluate reproducibility of metagenomic measurements.This study expands our previous metagenomic characterization of Puget Sound by sampling new nearshore environments including the Duwamish River, an EPA superfund site, and the Hood Canal, an area characterized by highly variable oxygen levels. We also resampled a wastewater treatment plant, nearshore and open ocean sites introducing a longitudinal component measuring seasonal and locational variations and establishing metagenomics sampling reproducibility. Microbial composition from samples collected in the open sound were highly similar within the same season and location across different years, while nearshore samples revealed multi-fold seasonal variation in microbial composition and diversity. Comparisons with recently sequenced predominant marine bacterial genomes helped provide much greater species level taxonomic detail compared to our previous study. Antibiotic resistance determinants and pollution and detoxification indicators largely grouped by location showing minor seasonal differences. Metal resistance, oxidative stress and detoxification systems showed no increase in samples proximal to an EPA superfund site indicating a lack of ecosystem adaptation to anthropogenic impacts. Taxonomic analysis of common sewage influent families showed a surprising similarity between wastewater treatment plant and open sound samples suggesting a low-level but pervasive sewage influent signature in Puget Sound surface waters. Our study shows reproducibility of metagenomic data sampling in multiple Puget Sound locations while establishing baseline measurements of antibiotic resistance determinants, pollution and detoxification systems. Combining seasonal and longitudinal data across these locations provides a foundation for evaluating variation in future studies.

Advancing Women Leaders in Global Health: Getting to Solutions.

BACKGROUND: Women comprise 75% of the health workforce in many countries and the majority of students in academic global health tracks but are underrepresented in global health leadership. This study aimed to elucidate prevailing attitudes, perceptions, and beliefs of women and men regarding opportunities and barriers for women's career advancement, as well as what can be done to address barriers going forward. METHODS: This was a convergent mixed-methods, cross-sectional, anonymous, online study of participants, applicants, and those who expressed an interest in the Women Leaders in Global Health Conference at Stanford University October 11-12, 2017. Respondents completed a 26-question survey regarding beliefs about barriers and solutions to addressing advancement for women in global health. FINDINGS: 405 participants responded: 96.7% were female, 61.6% were aged 40 or under, 64.0% were originally from high-income countries. Regardless of age or country of origin, leading barriers were: lack of mentorship, challenges of balancing work and home, gender bias, and lack of assertiveness/confidence. Proposed solutions were categorized as individual or meta-level solutions and included senior women seeking junior women for mentorship and sponsorship, junior women pro-actively making their desire for leadership known, and institutions incentivizing mentorship and implementing targeted recruitment to improve diversity of leadership. INTERPRETATION: This study is the first of its kind to attempt to quantify both the barriers to advancement for women leaders in global health as well as the potential solutions. While there is no shortage of barriers, we believe there is room for optimism. A new leadership paradigm that values diversity of thought and diversity of experience will benefit not only the marginalized groups that need to gain representation at the table, but ultimately the broader population who may benefit from new ways of approaching long-standing, intractable problems.