Using Mixed Methods Research in Children with Type 1 Diabetes: a Methodological Review.

PURPOSE OF REVIEW: Many factors influence disease management and glycemic levels in children with type 1 diabetes (T1D). However, these concepts are hard to examine in children using only a qualitative or quantitative research paradigm. Mixed methods research (MMR) offers creative and unique ways to study complex research questions in children and their families. RECENT FINDINGS: A focused, methodological literature review revealed 20 empirical mixed methods research (MMR) studies that included children with T1D and/or their parents/caregivers. These studies were examined and synthesized to elicit themes and trends in MMR. Main themes that emerged included disease management, evaluation of interventions, and support. There were multiple inconsistencies between studies when reporting MMR definitions, rationales, and design. Limited studies use MMR approaches to examine concepts related to children with T1D. Findings from future MMR studies, especially ones that use child-report, may illuminate ways to improve disease management and lead to better glycemic levels and health outcomes.

Child's perceived stress: A concept analysis.

PROBLEM: Child's perceived stress is a term used widely in literature, yet it is poorly defined. Perceived stress in childhood has been linked to negative health outcomes throughout the lifespan. Therefore, the ability of researchers and healthcare providers to conceptualize child's perceived stress and form accurate measures of the concept is of utmost importance. ELIGIBILITY CRITERIA: Following the eight steps identified by Walker and Avant, a literature review was conducted to identify studies that measured perceived stress in school-age children over the last 10 years. SAMPLE: Of 914 records identified, 136 were screened, and 16 met inclusion criteria. RESULTS: Child's perceived stress is best defined as any actual or imagined threat, personal and specific to childhood, which overwhelms the child and leads to changes in emotional, psychological, developmental, and/or physiological domains. CONCLUSIONS: While the concept of child's perceived stress is understood similarly throughout studies, there is notable variation in the way child's perceived stress is measured. Because of the specificity of perceived stress to childhood, and the wide range of what may be perceived as stressful by the child, the child is the best reporter of child's perceived stress. IMPLICATIONS: Researchers and clinicians must use child self-report tools to measure the concept of child's perceived stress. Opportunities exist for healthcare workers to intervene, educate, and help children and families recognize and manage child's perceived stress. This concept analysis includes many resources that practitioners may use to help alleviate stress in children.

Definitions, theories, and measurement of stress in children.

PROBLEM: Stress in children remains a complex concept to examine due to the inherent subjectivity and lack of specific manifestations, as well as the multiple ways stress can be defined and measured in children. Because stress is multifactorial,is experienced daily by children, and undergirds adolescent health and early mental illness, it is crucial to have a clear understanding of stress and the effects of stress in children from infancy through age twelve years. ELIGIBILITY CRITERIA: To be included in this review, literature must pertain to and highlight theories, definitions/classifications, and measurements of stress in children from infancy to 12 years of age. SAMPLE: The most pertinent articles identified through database searches (PubMed, Scopus, PsycINFO, CINAHL, Google Scholar), gray literature sources (e.g., child health websites), and reference lists of identified articles were included in this narrative overview. RESULTS: The results of this review are organized by themes and include: classifications and definitions of stress, stress-related theories, and tools to measure stress in children. CONCLUSIONS: Research addressing stressors and stress in children is limited, and there is wide variation in how researchers define and classify stress in children. Existing measures of stress in children younger than 12 address physiological, psychological, and observational components, but may be inconsistent and threaten validity of otherwise well-designed and well-executed studies. IMPLICATIONS: Improving the understanding and accurate measurement of stress in children enables researchers and clinicians to curtail undesirable health outcomes.

Inclusion of Effect Size Measures and Clinical Relevance in Research Papers.

BACKGROUND: There are multiple issues that arise when researchers focus on and only report "statistical significance" of study findings. An important element that is often not included in reports is a discussion of clinical relevance. OBJECTIVES: The authors address issues related to significance, the use of effect sizes, confidence or credible intervals, and the inclusion of clinical relevance in reports of research findings. METHODS: Measures of magnitude, precision, and relevance such as effect sizes, confidence intervals (CIs), and clinically relevant effects are described in detail. In addition, recommendations for reporting and evaluating effect sizes and CIs are included. Example scenarios are presented to illustrate the interplay of statistical significance and clinical relevance. RESULTS: There are several issues that may arise when significance is the focus of clinical research reporting. One issue is the lack of attention to nonsignificant findings in published works although findings show clinical relevance. Another issue is that significance is interpreted as clinical relevance. As well, clinically relevant results from small-sample studies are often not considered for publication, and thus, findings might not be available for meta-analysis. DISCUSSION: Findings in research reports should address effect sizes and clinical relevance and significance. Failure to publish clinically relevant effects and CIs may preclude the inclusion of clinically relevant studies in systematic reviews and meta-analyses, thereby limiting the advancement of evidence-based practice. Several accessible resources for researchers to generate, report, and evaluate measures of magnitude, precision, and relevance are included in this article.

Women and Infants in the Deep South Receiving Perinatal and Neonatal Palliative and Supportive Care Services.

BACKGROUND: While women in the Deep South area of the United States have higher rates of maternal and infant mortality, palliative and supportive care programs are lacking. Additionally, few studies have detailed referral triggers that are specific to the mother, infant, or pregnancy for inclusion in perinatal and neonatal palliative and supportive care programs. PURPOSE: The purpose of this retrospective, descriptive study was to examine the sociodemographic factors and referral triggers for perinatal-neonatal palliative and supportive care services for women enrolled in a newly developed perinatal-neonatal palliative and supportive care program. METHODS: Data were collected from medical records of 135 women enrolled in the program. Triggers for referral to the program were classified as fetal, maternal, or prenatal complications. RESULTS: A diverse sample of women were enrolled in the program. Most infants survived to birth and discharge from the hospital. Two-thirds of referrals were related to infant complications and 34% were for multiple complications (fetal, maternal, and/or prenatal). Triggers for referral to the program were not related to sociodemographic characteristics of women. IMPLICATIONS FOR PRACTICE: A comprehensive list of triggers that include maternal and prenatal complications, in addition to infant complications, may ensure at-risk women and infants, are enrolled in perinatal-neonatal palliative and supportive care programs early in pregnancy, regardless of sociodemographic factors. IMPLICATIONS FOR RESEARCH: Prospective research on the effectiveness of perinatal-neonatal palliative and supportive care programs in diverse populations of women is needed. This includes the examination of family health outcomes and provider perspectives.

Recruitment of hard to contact, hard to engage child populations in clinics and schools.

Recruiting children with chronic disease or subgroups of children (low income, obese, specific ages, types of cancer) from clinics and schools for research studies may be particularly difficult. While some have deemed such groups as hard to reach, these groups may be more accurately described as either hard to contact or hard to engage. This is not because children are unknown to the school or clinic but because the researcher's ability to communicate directly with targeted children prior to enrollment is limited. The purpose of this paper is to describe barriers and possible strategies for recruiting hard to contact or hard to engage subgroups of children. Barriers identified in recruiting these children were: naïve to research, communication style and technology, parent/guardian burden, parental conditions and concerns, child stressors and distractions, and research setting. Possible strategies include: pre-consent education, information sheets about study, identifying preferred method of communication, meaningful and appropriate incentives, coordinating recruitment visit with regularly scheduled clinic appointments or school schedule, demonstrating research equipment, informing staff about research study, negotiating creatively for space for research, and emphasizing confidentiality of data. Consideration of barriers to recruitment and utilization of strategies to counteract these barriers is critical to the success of a study involving subgroups of children.

Obesity Stigma and Bias.

Overweight and obesity are escalating in epidemic proportions in the United States. Individuals with overweight and obesity are often reluctant to seek medical help, not only for weight reduction but also for any health issue because of perceived provider discrimination. Providers who are biased against individuals with obesity can hinder our nation's effort to effectively fight the obesity epidemic. By addressing weight bias in the provider setting, individuals affected by obesity may be more likely to engage in a meaningful and productive discussion of weight. Providers need to be the go-to source for obesity-focused information on new and emerging treatments.

Biomarkers of Stress and Inflammation in Children.

Background: Children are increasingly exposed to stressors that can affect their immune function. Given the possible negative effects of stress and inflammation on health, researchers need to use appropriate biomarkers to measure both the effects of stress and subsequent inflammatory responses. Purpose: The purpose of this paper is to briefly review stress and inflammatory pathways, identify biomarkers used to measure chronic stress and chronic inflammation particularly in children in clinical and community settings, and to discuss methodological considerations when measuring stress and inflammation in children. Discussion: Biomarkers of chronic stress can be classified as central, meaning they are made in the brain, or peripheral, meaning they are made in the peripheral tissues in response to central signals. The peripheral biomarker, cortisol, is most frequently used in the community setting. In addition, indirect measures, such as oxytocin, may complement the assessment of stress. Common biomarkers of chronic inflammation in children are C-reactive protein (CRP), TNF-α, and IL-6. Similarly, indirect biomarkers of chronic inflammation, such as IL-2 and IL-1ß, may also be considered. Conclusions: Various types of specimens can be used to measure these biomarkers of stress and inflammation including blood, saliva, urine, sweat, hair, nails, and tears. Each type of specimen has different requirements for collection, storage, and assay. Future research would benefit from standardized biomarker levels across age and development in children and incorporation of other biomarkers.

Digital health and human rights of young adults in Ghana, Kenya and Vietnam: a qualitative participatory action research study.

INTRODUCTION: Digital health offers the potential to strengthen health systems in low- and middle-income countries. However, experts have warned about threats to human rights. METHODS: We used qualitative methods to investigate how young adults in Ghana, Kenya and Vietnam use their mobile phones to access online health information and peer support, and what they see as the effect on their human rights. We applied a transnational participatory action research approach. Global and national networks of people living with HIV, AIDS activists, young adults and human rights lawyers participated in study design, desk review, digital ethnography, focus group discussions, key informant interviews and qualitative analysis. RESULTS: We interviewed 174 young adults ages 18-30 in 24 focus groups in 7 cities in Ghana, Kenya and Vietnam, and held 36 key informant interviews with national and international stakeholders. Young adults reported predominantly using Google, social media and social chat groups for health information. They emphasised reliance on trusted peer networks, and the role of social media health champions. However, gender inequalities, class, education and geography create barriers to online access. Young adults also disclosed harms linked to seeking health information online. Some described anxiety about phone dependence and risk of surveillance. They called for a greater voice in digital governance. CONCLUSION: National health officials should invest in young adults' digital empowerment, and engage them in policy to address benefits and risks of digital health. Governments should cooperate to demand regulation of social media and web platforms to uphold the right to health.

A call for citizen science in pandemic preparedness and response: beyond data collection.

The COVID-19 pandemic has underlined the need to partner with the community in pandemic preparedness and response in order to enable trust-building among stakeholders, which is key in pandemic management. Citizen science, defined here as a practice of public participation and collaboration in all aspects of scientific research to increase knowledge and build trust with governments and researchers, is a crucial approach to promoting community engagement. By harnessing the potential of digitally enabled citizen science, one could translate data into accessible, comprehensible and actionable outputs at the population level. The application of citizen science in health has grown over the years, but most of these approaches remain at the level of participatory data collection. This narrative review examines citizen science approaches in participatory data generation, modelling and visualisation, and calls for truly participatory and co-creation approaches across all domains of pandemic preparedness and response. Further research is needed to identify approaches that optimally generate short-term and long-term value for communities participating in population health. Feasible, sustainable and contextualised citizen science approaches that meaningfully engage affected communities for the long-term will need to be inclusive of all populations and their cultures, comprehensive of all domains, digitally enabled and viewed as a key component to allow trust-building among the stakeholders. The impact of COVID-19 on people's lives has created an opportune time to advance people's agency in science, particularly in pandemic preparedness and response.

Peer- and community-led responses to HIV: A scoping review.

INTRODUCTION: In June 2021, United Nations (UN) Member States committed to ambitious targets for scaling up community-led responses by 2025 toward meeting the goals of ending the AIDS epidemic by 2030. These targets build on UN Member States 2016 commitments to ensure that 30% of HIV testing and treatment programmes are community-led by 2030. At its current pace, the world is not likely to meet these nor other global HIV targets, as evidenced by current epidemiologic trends. The COVID-19 pandemic threatens to further slow momentum made to date. The purpose of this paper is to review available evidence on the comparative advantages of community-led HIV responses that can better inform policy making towards getting the world back on track. METHODS: We conducted a scoping review to gather available evidence on peer- and community-led HIV responses. Using UNAIDS' definition of 'community-led' and following PRISMA guidelines, we searched peer-reviewed literature published from January 1982 through September 2020. We limited our search to articles reporting findings from randomized controlled trials as well as from quasi-experimental, prospective, pre/post-test evaluation, and cross-sectional study designs. The overall goals of this scoping review were to gather available evidence on community-led responses and their impact on HIV outcomes, and to identify key concepts that can be used to quickly inform policy, practice, and research. FINDINGS: Our initial search yielded 279 records. After screening for relevance and conducting cross-validation, 48 articles were selected. Most studies took place in the global south (n = 27) and a third (n = 17) involved youth. Sixty-five percent of articles (n = 31) described the comparative advantage of peer- and community-led direct services, e.g., prevention and education (n = 23) testing, care, and treatment programs (n = 8). We identified more than 40 beneficial outcomes linked to a range of peer- and community-led HIV activities. They include improved HIV-related knowledge, attitudes, intentions, self-efficacy, risk behaviours, risk appraisals, health literacy, adherence, and viral suppression. Ten studies reported improvements in HIV service access, quality, linkage, utilization, and retention resulting from peer- or community-led programs or initiatives. Three studies reported structural level changes, including positive influences on clinic wait times, treatment stockouts, service coverage, and exclusionary practices. CONCLUSIONS AND RECOMMENDATIONS: Findings from our scoping review underscore the comparative advantage of peer- and community-led HIV responses. Specifically, the evidence from the published literature leads us to recommend, where possible, that prevention programs, especially those intended for people living with and disproportionately affected by HIV, be peer- and community-led. In addition, treatment services should strive to integrate specific peer- and community-led components informed by differentiated care models. Future research is needed and should focus on generating additional quantitative evidence on cost effectiveness and on the synergistic effects of bundling two or more peer- and community-led interventions.

Emerging human rights issues in China's response to HIV/AIDS.

There was a visible presence for China during AIDS 2010, which included a delegation of non-governmental organizations (NGOs) from the country. Chinese officials also presented on the government's work on HIV/AIDS, which elicited critical feedback from activists. In this article, conference attendees Sara L. M. Davis and Li Dan outline the main human rights issues in China's response to HIV/AIDS.

Challenges and strategies of early career nurse scientists when the traditional postdoctoral fellowship is not an option.

PURPOSE: The purpose of this article is to discuss challenges and strategies related to maintaining a program of research for early career nurse scientists. Nurse scientists who do not complete a traditional postdoctoral fellowship or who work in low research-resourced institutions may struggle with research collaboration and development. PRINCIPAL RESULTS: Specific challenges experienced by nurse scientists in early career development included: advanced age at the completion of the research doctorate, gender roles and research careers, sustainable work-life balance, employment in low research-resourced institutions, and time. Strategies to assist nurse scientists in finding support and opportunities for research and career development included: professional networking, institutional collaboration, non-traditional training experiences for new nurse scientists, sustainable work-life balance, professional development and service, and competing needs of teaching mission and research. One group's experience with fostering support and collaboration is presented as an example. MAJOR CONCLUSIONS: It is possible for nurse scientists in low research-resourced institutions to find opportunities to develop their program of research and foster their professional growth. Implementing the identified strategies helps to provide sustainability of new nurse scientists' research efforts. Engaging nurse scientists in supportive and collaborative opportunities paves the way for early career nurse scientists to become experts in their field.

Survey of abuses against injecting drug users in Indonesia.

In Indonesia, an ongoing government "war on drugs" has resulted in numerous arrests and anecdotal reports of abuse in detention, but to date there has been little documentation or analysis of this issue. JANGKAR (also known in English as the Indonesian Harm Reduction Network), a nongovernmental organization (NGO) based in Jakarta, surveyed 1106 injecting drug users in 13 cities about their experiences of police abuse. Of those interviewed, 667 or 60% reported physical abuse by police. These findings indicate the importance of continuing efforts to promote police reform and harm reduction in Indonesia.

Depressive Symptoms, Perceived Stress, and Cortisol in School-Age Children With Type 1 Diabetes: A Pilot Study.

Despite adequate insulin regimens and concurrent treatments for Type 1 diabetes (T1D), many children have trouble achieving glycemic control, as evidenced by elevated HbA1c levels. Maternal and child depressive symptoms, as well as child perceived stress, are associated with less optimal glycemic control. Cortisol, a stress hormone, may mediate the relationships among depressive symptoms, perceived stress, and glycemic control. The purposes of this pilot study were to (1) examine the feasibility of collecting salivary samples to measure cortisol change in prepubertal school-age children diagnosed with T1D and (2) determine effect sizes for the relationships among maternal depressive symptoms and child depressive symptoms, perceived stress, cortisol levels, and glycemic control. Participants were recruited using convenience sampling from a pediatric endocrinology clinic in the southeastern United States. All data, including surveys, salivary samples, HbA1c, height, and weight, were collected the same day as a clinic visit. The study included 30 children, ages 6.9-12.2 years, and their mothers. Most children were female (70%) and Caucasian (76.7%), but the sample was socioeconomically diverse. HbA1c values ranged from 6.1% to 12.2%. Of the children, 18 showed normal declines in cortisol over 3 hr, while 12 had increases in cortisol. Results show recruitment, participation, and data collection are feasible in school-age children with T1D. Examination of relevancy thresholds for effect sizes between variables of interest supports the need for future research in a larger, more representative sample on research questions that include the role cortisol plays as a potential mediator among examined variables.

Measuring the Impact of the Human Rights on Health in Global Health Financing.

In response to new scientific developments, UNAIDS, WHO, and global health financing institutions have joined together to promote a "fast-track" global scale-up of testing and treatment programs. They have set ambitious targets toward the goal of ending the three diseases by 2030. These numerical indicators, based on infectious disease modeling, can assist in measuring countries' progressive realization of the right to health. However, they only nominally reference the catastrophic impact that human rights abuses have on access to health services; they also do not measure the positive impact provided by law reform, legal aid, and other health-related human rights programs. Drawing on experience at the Global Fund to Fight AIDS, Tuberculosis and Malaria, which has incorporated expanded stakeholder consultation and human rights programming into its grants, the article argues that addressing human rights barriers to access is often an ad hoc activity occurring on the sidelines of a health grantmaking process that has focused on the scale-up of biomedical programs to meet global health indicators. To ensure that these biomedical programs have impact, UN agencies and health financing mechanisms must begin to more systematically and proactively integrate human rights policy and practice into their modeling and measurement tools.

Human rights and the Global Fund to Fight AIDS, Tuberculosis, and Malaria.

In recent years, multilateral and bilateral donors have begun engaging more actively in assessment and management of human rights risks that can either impact, or unintentionally result from, aid investments. In 2012, the Global Fund committed to a four-year strategy which includes protecting and promoting human rights as one of its strategic objectives. This ambitious commitment placed the Global Fund at the forefront of multilateral health donors engaging on human rights concerns. In 2013, the Global Fund began to operationalize this commitment in partnership with internal and external stakeholders and civil society, opening up a new field of debate around the obligations of multilateral health donors in the context of country ownership.