Needs of children with neurodevelopmental disorders and medical complexity: Caregiver perspectives.

BACKGROUND: Caregivers of children with neurodevelopmental disorders and medical complexities (NDD-MC) coordinate care across complex multisectoral systems. Often NDD-MC children have complex behaviors, however there is limited information on coordination needs for families. AIM: The objective of this mixed methods study was to understand the needs of families with NDD-MC children. METHODS AND PROCEDURES:  This sequential exploratory study obtained the perspectives of 67 caregivers of NDD-MC children using semi-structured interviews and validated questionnaires to measure family quality of life, care integration, and resource use. An adapted model using Maslow's hierarchy of needs was integrated, to understand the impacts of caregiving on quality of life. OUTCOMES AND RESULTS: Lack of support in caring for NDD-MC children negatively impacted family quality of life, resulting in various unmet needs, including caregiver burden, behavioural challenges, financial losses, and mental health issues. Caregivers dealt with a fragmented healthcare system that offered limited support to address coordination challenges. CONCLUSIONS AND IMPLICATIONS: The implementation of a needs-based care coordination program is recommended to consider the health, educational, and social needs of NDD-MC children and their families. Effective care for children with complex needs should tailor support for families using Maslow's hierarchy to enhance quality of life.

Double transition of young migrants in Luxembourg: vulnerable, resilient and empowering integration trajectories in the period of youth.

Migrant integration trajectories have become more complex, open, uncertain, and continuously changing, over time. For young migrants, their integration endeavour intersects with their process of transition to adulthood, a double transition that poses additional challenges. Recent theoretical perspectives such as "liquid integration" aim at focusing on the dynamic, processual, and temporal nature of migrant integration. The present article focuses on the dynamic interplay of obstacles and enablers that, over time, interact to construct complex, often non-linear, and open-ended integration and coming of age trajectories of young migrants (aged from 18 to 30 years) coming from outside the European Union (EU) to EU countries. Empirical results from the H2020 MIMY (Empowerment through liquid Integration of Migrant Youth in vulnerable conditions) research project in Luxembourg will be presented. In order to address the goal of the research, qualitative data were gathered by means of N = 38 interviews with young migrants with different migratory paths, characteristics and experiences, and specifically included: young migrants from non-EU Portuguese-speaking countries (N = 16), refugees living in reception centres (N = 15), migrants who since arriving in Luxembourg have become publicly visible (N = 7). Content analysis of the interviews allowed a twofold purpose: (1) capturing the unfolding of intersectional integration obstacles that over time play a decisive role in the building of conditions of vulnerability of the double transition under analysis; (2) capturing the multidimensional resources that interactively build up to give rise to resilient and empowering integration and coming of age experiences. The identification of decisive multidimensional obstacles and resources present in the integration endeavour during the process of coming of age allowed us to capture differentiated routes of vulnerability, on the one hand, and resilience/ empowerment on the other. Key ingredients of both vulnerable and more resilient and empowering integration and coming of age trajectories are identified as well as their relational dynamics, enabling to address key challenges for the resilience and empowerment of young migrants in the process of negotiating their transition to adulthood amidst their integration challenges in the Luxembourgish society.

Measure what matters: considerations for outcome measurement of care coordination for children with neurodevelopmental disabilities and medical complexity.

Introduction: Care Coordination (CC) is a significant intervention to enhance family's capacity in caring for children with neurodevelopmental disability and medical complexity (NDD-MC). CC assists with integration of medical and behavioral care and services, partnerships with medical and community-based supports, and access to medical, behavioral, and educational supports and services. Although there is some consensus on the principles that characterize optimal CC for children with NDD-MC, challenges remain in measuring and quantifying the impacts of CC related to these principles. Two key challenges include: (1) identification of measures that capture CC impacts from the medical system, care provider, and family perspectives; and (2) recognition of the important community context outside of a hospital or clinical setting. Methods: This study used a multilevel model variant of the triangulation mixed methods design to assess the impact of a CC project implemented in Alberta, Canada, on family quality of life, resource use, and care integration at the broader environmental and household levels. At the broader environmental level, we used linked administrative data. At the household level we used quantitative pre-post survey datasets, and aggregate findings from qualitative interviews to measure group-level impacts and an embedded multiple-case design to draw comparisons, capture the nuances of children with NDD-MC and their families, and expand on factors driving the high variability in outcome measures. Three theoretical propositions formed the basis of the analytical strategy for our case study evidence to explore factors affecting the high variability in outcome measures. Discussion: This study expanded on the factors used to measure the outcomes of CC and adds to our understanding of how CC as an intervention impacts resource use, quality of life, and care integration of children with NDD-MC and their families. Given the heterogeneous nature of this population, evaluation studies that account for the variable and multi-level impacts of CC interventions are critical to inform practice, implementation, and policy of CC for children with NDD-MC.

Care coordination of children with neurodevelopmental disabilities and medical complexity during the COVID-19 pandemic: Caregiver experiences.

BACKGROUND: The COVID-19 pandemic and subsequent public health restrictions created significant challenges for children with neurodevelopmental disabilities with medical complexity and their caregivers including restrictions in care coordination for children and their families. Care coordination enhances families' skills in accessing and coordinating medical, education and disability care across sectors and systems. OBJECTIVE: This study examined the implications of pandemic restrictions on care coordination from caregiver perspectives. These experiences can inform emergency preparedness planning and recovery strategies. METHOD: A qualitative descriptive design was utilized to explore and describe the experience of caregivers of children with neurodevelopmental disabilities and medical complexity. Nineteen caregivers were interviewed about their experience with care coordination during the pandemic. FINDINGS: Caregiver experiences of care coordination during the pandemic highlighted the importance of care coordination during a public health emergency. Two themes emerged: (1) disruptions to care coordination from initial COVID-19 restrictions leading to lack of access to supports and services, increasing level of need, and impacts of disruption for caregivers and children; and (2) adaptation and responsiveness to COVID-19 restrictions by advocating for families and managing uncertainties. RECOMMENDATIONS: Recommendations include recognition of care coordination as a protective factor, designation as an essential service and sustained or increased funding for care coordination during emergencies. Families should be engaged in identifying care needs during care coordination, including during public health emergencies.

How did the tobacco ban increase inmates' body weight during incarceration in Canadian federal penitentiaries? A cohort study.

OBJECTIVE: This study aimed to determine how inmates' body weight changed during incarceration in Canadian federal penitentiaries, based on their history of tobacco use. Since tobacco was banned from all Canadian federal penitentiaries in 2008, little is known about the unintended health consequences of this ban, especially on inmates' body weight. DESIGN: Cohort study. SETTING: Participants were male and female inmates incarcerated for at least 6 months in Canadian federal penitentiaries. We collected data from 10 institutions in two Canadian regions (Ontario and Atlantic). PARTICIPANTS: We collected data from 754 inmates who volunteered to participate in the study. INTERVENTION: This study examined weight change in relation to a history of tobacco use. In 2016-2017, anthropometric data were collected and compared with recorded anthropometric data at the beginning of incarceration (mean follow-up of 5.0±8.3 years). Self-reported data on tobacco and substance use were collected. Weight change was compared between inmates with and without a history of tobacco use. OUTCOMES: The main outcome measures were body weight change (kg), body mass index (BMI) change (kg/m2), annual weight change (kg/year), and BMI and waist circumference (cm) at the time of the interview. RESULTS: During incarceration, ex-smokers gained more than twice the amount of weight compared with non-smokers (7.5 kg weight gain for smokers vs 3.7 kg weight gain for non-smokers). Once adjusted for covariates in a regression analysis, for inmates who gained the most weight (75th and 90th percentiles), non-smokers had, respectively, 1.64 and 2.3 lower BMI points than ex-smokers. CONCLUSIONS: During incarceration in Canadian federal penitentiaries, inmates with a history of tobacco use gained significantly more weight than non-smokers. This put them at increased risk of developing obesity-related health problems. This information is important for the prison setting when planning related programmes and regulation.

Influence of physical activity, screen time and sleep on inmates' body weight during incarceration in Canadian federal penitentiaries: a retrospective cohort study.

OBJECTIVE: Recent research found that inmates experience undesirable and rapid weight gain during incarceration in Canadian federal penitentiaries. However, little is known about what factors and daily movement behaviours (e.g., physical activity, screen time, and sleep) influence weight gain during incarceration. This study examines how these 24-h movement/non-movement behaviours contribute to weight gain during incarceration. METHODS: This retrospective cohort study explored how weight change outcomes during incarceration (weight change, body mass index (BMI) change, and yearly weight gain) were influenced by physical activity, screen time, and sleep in a convenience sample of 754 inmates. The outcome measures were taken twice, once from participants' medical chart at admission and again during a face-to-face follow-up interview (conducted in 2016-2017; mean follow-up time of 5.0 ± 8.3 years). Physical activity, screen time, and sleep were self-reported. The statistical analysis was chi-square testing, non-parametric median comparison testing, and regression analysis to control for confounders. RESULTS: Inmates who engaged in at least 60 min of daily physical activities gained less weight (4.5 kg) compared to inmates who reported not exercising (8.3 kg). Different types of exercise (cardiovascular exercises, weight lifting, and team sports) were helpful at limiting weight gain, but playing sports was the most effective. Screen time and sleep were not associated with weight gain outcomes. CONCLUSION: Among the behaviours examined, physical inactivity was significantly associated with higher weight gain during incarceration. However, even high levels of physical activity (> 60 min/day) were not sufficient to eliminate weight gain during incarceration in Canada.

Magnitude and factors associated with anti-malarial self-medication practice among residents of Kasulu Town Council, Kigoma-Tanzania.

BACKGROUND: Anti- malarial self-medication practice in Africa is very common. It is considered as an alternative way for people who cannot afford the cost of health care services. This study was conducted to assess the magnitude and factors associated with anti-malarial self-medication practice among residents of Kasulu Town Council. MATERIALS AND METHODS: The study was a descriptive cross sectional study. Two hundred and eighty consenting respondents were selected by systematic random sampling and interviewed with the aid of a semi structured questionnaire to assess anti-malarial self- medication practice. A p value of less than 0.05 was considered statistically significant, at 95% confidence interval. RESULTS: Prevalence of anti-malarial self-medication was (69.6%). Majority of the respondents (83.1%) reported that, they did not get better after self- medication. About 36% of the respondents metioned time taken in health facilities as the main factor for self-medication. CONCLUSION: This study revealed that, self-medication practice is very common among community members in Kasulu district. The main reasons identified for self-medication was long time taken to get treatment in health facilities.

An exploration of reported food intake among inmates who gained body weight during incarceration in Canadian federal penitentiaries.

BACKGROUND: Canadian penitentiaries have recently been shown to be obesogenic. However, little is known about the eating habits of inmates who gained weight while living in the prison environment. METHODS: This retrospective cohort study examined the reported food intake of inmates during incarceration in federal penitentiaries. During a face to face interview, anthropometric measures (2016-2017) were taken and compared to anthropometric data at the beginning of incarceration (mean follow-up of 5.0 ± 8.3 years). Self-reported data on food intake were collected via a food frequency questionnaire. RESULTS: Inmates who gained the most weight (15.7 kg) during incarceration reported not eating vegetables. They were followed by inmates who gained 14.3 kg and reported not eating fruit. Other inmates who gained a significant amount of weight reported not eating cereal, dairy or legumes. Moreover, inmates' weight gain was also assessed by special diets: inmates following a religious diet (4.5 kg) or a diet of conscience (-0.3 kg) gained less weight than inmates not following a diet (5.8 kg). In comparison to other types of diets, inmates on a medical diet gained the most weight (7.5 kg). Furthermore, inmates who gained significant weight (8.0 kg) also reported not purchasing healthy foods from the commissary store (or "canteen"), whereas inmates who gained less weight (4.8 kg) reported purchasing healthy foods from the commissary store (or "canteen"). The observed weight gain was positively associated with food purchased from the commissary store (or "canteen"), but was not associated with the feeding system of the penitentiary (tray, cafeteria or meal plan). DISCUSSION: Food intake during incarceration is a modifiable risk factor that could be the target of weight management interventions with inmates. Our findings suggest that inmates who gained the most weight also reported having low intake of foods deemed healthy (vegetables, fruit, cereal, dairy and legumes) from food services and from the commissary store (or "canteen") purchases.

Canadian federal penitentiaries as obesogenic environments: a retrospective cohort study.

BACKGROUND: Very little is known about how incarceration influences a person's weight in Canada. We sought to determine how inmates' weights change during their incarceration in Canadian federal penitentiaries. METHODS: We performed a retrospective, longitudinal cohort study to examine weight change in Canadian federal penitentiaries. To participate, inmates had to have been incarcerated for at least 6 months at the time of the study. Current anthropometric data were measured or taken from medical records, then compared with anthropometric data from the beginning of incarceration (mean follow-up of 5.0 ± 8.3 yr). We examined 3 outcomes: change in weight (kg), change in body mass index (BMI) and rate of weight change (kg/yr) during incarceration. RESULTS: A total of 1420 inmates participated in this study. Almost three-quarters (73.0%, n = 1037)) of participants gained weight during incarceration. Inmates gained a median of 6.2 (95% confidence interval [CI] 5.6-6.9) kg, and BMI increased by 2.0 (95% CI 1.8-2.2). Obesity rates increased by 71%, from 26.6% of participants (n = 378) on admission to 45.4% of participants at follow-up (n = 645). The proportion of inmates with a BMI in the normal range (18.5-24.9) decreased by 52%. Weight gain was found to be associated with older age, region (Ontario v. Atlantic), ethnicity (Aboriginal inmates showed the highest weight gain), longer incarceration, and longer total sentence. However, weight gain was not associated with sex, feeding system or spoken language. INTERPRETATION: The Canadian correctional environment can be considered obesogenic, with most inmates experiencing undesirable and rapid weight gain during their incarceration. Rates of obesity increased dramatically during incarceration, and could put inmates at increased risk of obesity-related health problems.