Children As Caregivers

The global public health community has focused care and funding on TB and HIV in Zambia, but adult policy-makers, doctors, and humanitarians often ignore children's perspectives as they confront infectious diseases. Well-intentioned practioners fail to realize how children take on active caregiving roles when their guardians become seriously ill. Using ethnographic methods, and listening to the voices of children as well as adults, Hunleth makes the caregiving work of children visible. Children actively seek to "get closer" to ill guardians by providing good care. Both children and ill adults define good care as children's attentiveness to adults' physical needs, their ability to carry out treatment and medication programs in the home, and above all, the need to maintain physical closeness and proximity

Youth participatory research evidence to inform health policy: A systematic review protocol

INTRODUCTION: Young people\u27s participation in health research produces knowledge that is indispensable for creating appropriate and effective policies. However, how best to disseminate youth participatory research evidence to impact health policy is not known. Therefore, the objectives of this systematic review are to describe the evidence produced through youth participatory research, including the strategies used to disseminate youth participatory research evidence to health policymakers. These are necessary to improve policymakers\u27 use of youth participatory research evidence and, thereby, make programmes more impactful for young people. METHODS AND ANALYSIS: The meta-narrative methodology will guide the systematic review to highlight the contrasting and complementary evidence on the use of engaging youth in research to affect health policymaking. Relevant studies will be identified by searching electronic databases, including but not limited to EBSCO, PROQUEST, OVID Medline, Sociological Abstracts and Google Scholar from inception to December 2020. The methodological quality of included quantitative, qualitative and mixed-methods research studies will be assessed using valid appraisal tools. The meta-narrative approach to analysis will include identifying meta-narratives of how youth participation informed the health research findings. ETHICS AND DISSEMINATION: An advisory group of young people will advise on the study and dissemination of the findings. As part of our plan for active dissemination, we will produce a policy brief that builds the rationale for using research with and by youth as part of an evidence base necessary for achieving youth health outcomes

Rural Primary Care and the Diagnostic Resolution of Abnormal Screening Mammograms: A Mixed Methods Study in Rural Missouri

Rural health clinics (RHCs) and federally qualified health centers (FQHCs) play a vital role in initiating cancer screening in underserved, rural settings. Yet there is limited information about their involvement in diagnostic tests when a mammogram result is abnormal. Diagnostic resolution of abnormal mammograms varies widely by geographic location and resources, and timely resolution is important for addressing rural-urban cancer disparities. This mixed methods study in a rural region of Missouri with high rates of cancer mortality examined the roles of primary care providers during follow-up after an abnormal mammogram, the processes they used, and the clinic specific variations among these roles and processes. Our data show substantial involvement of primary care during follow-up, with differences in resources and formalized and informal strategies between FQHCs and RHCs. Elucidating roles and processes is a necessary step before evidence based strategies, often developed in urban settings, can be adapted for rural settings

Inclusion of children with disabilities in qualitative health research: A scoping review

BACKGROUND: Children with disabilities have the right to participate in health research so their priorities, needs, and experiences are included. Health research based primarily on adult report risks misrepresenting children with disabilities and their needs, and contributes to exclusion and a lack of diversity in the experiences being captured. Prioritizing the participation of children with disabilities enhances the relevance, meaningfulness, and impact of research. METHODS: A scoping review was conducted to critically examine the participation of children with disabilities in qualitative health research. The electronic databases PubMed, PsychInfo, Embase, and Google Scholar were searched. Inclusion criteria included qualitative health studies conducted with children with disabilities, published between 2007 and 2020, and written in English. Articles were screened by two reviewers and the synthesis of data was performed using numeric and content analysis. RESULTS: A total of 62 studies met inclusion criteria. Rationales for including children with disabilities included child-focused, medical model of disability, and disability rights rationales. Participation of children with disabilities in qualitative health research was limited, with the majority of studies conducting research on rather than in partnership with or by children. Findings emphasize that children with disabilities are not participating in the design and implementation of health research. CONCLUSION: Further effort should be made by health researchers to incorporate children with a broad range of impairments drawing on theory and methodology from disability and childhood studies and collaborating with people who have expertise in these areas. Furthermore, an array of multi-method inclusive, accessible, adaptable, and non-ableist methods should be available to enable different ways of expression

A systematic review of body fat distribution and mortality in older people

We conducted a systematic review investigating body fat distribution in older adults and its association with morbidity and mortality. Our search yielded 2,702 citations. Following three levels of screening, 25 studies were selected to evaluate the association between body fat distribution and comorbidity, and 17 studies were used in the mortality analysis. Most of the selected studies in our analyses used anthropometric measures, e.g., body mass index (BMI), waist circumference, and waist-hip ratio; relatively few studies used direct measures, such as body fat/lean mass, and percentage body fat. Studies reported inconsistent findings regarding the strongest predictor(s) of morbidity and mortality. However, the majority of studies suggested that BMI per se was not the most appropriate predictor of morbidity and mortality in the elderly because of its inability to discern or detect age-related body fat redistribution. In addition, studies using BMI found that the optimal BMI range for the lowest mortality in the elderly was overweight (25 kg/m(2) ≤ BMI < 30 kg/m(2)) or mildly obese (30 kg/m(2) ≤ BMI < 35 kg/m(2)). Our findings suggest that the current clinical guidelines, recommending that overweight and obesity are major risk factors for increased morbidity and mortality are not applicable to this population. Therefore, the central message of this review is to admonish the government to establish new guidelines specifically for this population, using a combination of body fat distribution measurements, and to certify that these guidelines will not be applied to inappropriate populations

What is the state of children\u27s participation in qualitative research on health interventions?: A scoping study

BACKGROUND: Children are the focus of numerous health interventions throughout the world, yet the extent of children\u27s meaningful participation in research that informs the adaptation, implementation, and evaluation of health interventions is not known. We examine the type, extent, and meaningfulness of children\u27s participation in research in qualitative health intervention research. METHOD: A scoping study was conducted of qualitative published research with children (ages 6-11 years) carried out as part of health intervention research. Following Arksey and O\u27Malley\u27s scoping study methodology and aligned with the PRISMA-ScR guidelines on the reporting of scoping reviews, the authors searched, charted, collated, and summarized the data, and used descriptive and content analysis techniques. Ovid MEDLINE was searched from 1 January 2007 to 2 July 2018 using the keywords children, health intervention, participation, and qualitative research. Study selection and data extraction were carried out by two reviewers independently. RESULTS: Of 14,799 articles screened, 114 met inclusion criteria and were included. The study identified trends in when children were engaged in research (e.g., post-implementation rather than pre-implementation), in topical (e.g., focus on lifestyle interventions to prevent adult disease) and geographical (e.g., high-income countries) focuses, and in qualitative methods used (e.g., focus group). While 78 studies demonstrated meaningful engagement of children according to our criteria, there were substantial reporting gaps and there was an emphasis on older age (rather than experience) as a marker of capability and expertise. CONCLUSIONS: Despite evidence of children\u27s meaningful participation, topical, geographical, and methodological gaps were identified, as was the need to strengthen researchers\u27 skills in interpreting and representing children\u27s perspectives and experiences. Based on these findings, the authors present a summary reflective guide to support researchers toward more meaningful child participation in intervention research

Facilitators of multisector collaboration for delivering cancer control interventions in rural communities: A descriptive qualitative study

PURPOSE AND OBJECTIVES: Multisector collaboration is a widely promoted strategy to increase equitable availability, access, and use of healthy foods, safe places for physical activity, social supports, and preventive health care services. Yet fewer studies and resources exist for collaboration among governmental and nongovernmental agencies to address public problems in rural areas, despite an excess burden of risk factors for cancer morbidity and mortality. We aimed to learn about cancer prevention activities and collaboration facilitators among rural informal interagency networks. EVALUATION METHODS: In 2020, researchers conducted semistructured interviews with staff from rural public health and social services agencies, community health centers, and extension offices. Agency staff were from 5 service areas across 27 rural counties in Missouri and Illinois with high poverty rates and excess cancer risks and mortality. We conducted a thematic analysis to code interview transcripts and identify key themes. RESULTS: Exchanging information, cohosting annual or one-time events, and promoting other agencies\u27 services and programs were the most commonly described collaborative activities among the 32 participants interviewed. Participants indicated a desire to improve collaborations by writing more grants together to codevelop ongoing prevention programs and further share resources. Participants expressed needs to increase community outreach, improve referral systems, and expand screenings. We identified 5 facilitator themes: commitment to address community needs, mutual willingness to collaborate, long-standing relationships, smaller community structures, and necessity of leveraging limited resources. Challenges included lack of funding and time, long travel distances, competing priorities, difficulty replacing staff in remote communities, and jurisdictional boundaries. Although the COVID-19 pandemic further limited staff availability for collaboration, participants noted benefits of remote collaborative meetings. IMPLICATIONS FOR PUBLIC HEALTH: Rural areas need consistent funding and other resources to support health-improving multisector initiatives. Existing strengths found in the rural underresourced areas can facilitate multisector collaborations for cancer prevention, including long-standing relationships, small community structures, and the need to leverage limited resources

Guidelines for conducting virtual cognitive interviews during a pandemic

The COVID-19 pandemic has challenged researchers working in physical contact with research participants. Cognitive interviews examine whether study components (most often questionnaire items) are worded or structured in a manner that allows study participants to interpret the items in a way intended by the researcher. We developed guidelines to conduct cognitive interviews virtually to accommodate interviewees who have limited access to the internet. The guidelines describe the essential communication and safety equipment requirements and outline a procedure for collecting responses while maintaining the safety of the participants and researchers. Furthermore, the guidelines provide suggestions regarding training of participants to use the technology, encouraging them to respond aloud (a potential challenge given that the researcher is not physically present with the participant), and testing and deploying the equipment prior to the interview. Finally, the guidelines emphasize the need to adapt the interview to the circumstances and anticipate potential problems that might arise

Caregiver perceptions of change in pediatric asthma control during the COVID-19 pandemic

PURPOSE: Although several indicators suggest that pediatric asthma control in the United States improved early in the pandemic, other indicators suggest not. Missing are reports from caregivers of the experiences of their children with asthma early in the pandemic. METHODS: Using the PP-ACT and other measures that we specifically constructed for our research, we conducted a cross-sectional national survey of US caregivers of children with asthma (N=595) to examine perceived change in their child\u27s asthma control and changes in reports of ED visits and use of emergency relief medicine and controller medicine pre-pandemic (January to March 2020) versus early-pandemic (June to September 2020). RESULTS: Caregivers fell into three groups: most caregivers perceived that their child\u27s asthma control was improved (50.3%) or unchanged (41.2%), and few reported worse control (8.5%). Surprisingly, all three groups of caregivers reported similar frequencies of early-pandemic and pre-pandemic ED visits and use of emergency relief medicine. Also surprising, caregivers who perceived their child\u27s asthma as more controlled (compared with the other two groups) reported more frequent ED visits and use of emergency relief medicine, yet also more use of controller medicine at both early-pandemic and pre-pandemic. CONCLUSION: The mismatch between caregivers\u27 perceptions of their child\u27s early-pandemic asthma control and their reports of ED visits and use of emergency relief medicine suggests that caregivers may rely on a gist (a global evaluation that can include nonbiomedical evidence) when estimating their child\u27s asthma control. Caregivers and their families could benefit from help from clinicians in understanding the discrepancy between subjective asthma control and asthma control indicators and in understanding what well-controlled asthma looks and feels like

Leveraging health infrastructure to optimize HPV vaccination for adolescents in Zambia: Protocol for an implementation study

BACKGROUND: Cervical cancer is the leading cause of cancer death in Zambia, where HIV prevalence is also high (11.3%). HIV heightens the risk of developing and dying from cervical cancer. The human papillomavirus (HPV) vaccine can prevent 90% of cervical cancers, and in Zambia is recommended for adolescent girls ages 14-15 years, including those with HIV. Currently they mainly deliver HPV vaccination via school-based campaigns, which may exclude the most vulnerable adolescents-those out-of-school or who irregularly attend. Adolescents living with HIV (ALHIV) are more likely to have these vulnerabilities. Further, school-based campaigns are not tailored to the WHO-recommended HPV vaccination schedule for ALHIV (3 versus 2 doses). Integrating HPV vaccination into routine care in adolescent HIV clinics may ensure that ALHIV have access to vaccine at the WHO-recommended schedule. Such integration requires a multilevel approach, stakeholder engagement, and diversified implementation strategies, given known challenges of providing the HPV vaccine in LMICs, including Zambia. METHODS: Our study aims to integrate HPV vaccination into routine care in adolescent HIV clinics. To achieve success, we will co-design a package of implementation strategies using a previously successful implementation research approach developed for cervical cancer prevention in LMICs: the Integrative Systems Praxis for Implementation Research (INSPIRE). INSPIRE is a novel, comprehensive approach to develop, implement, and evaluate implementation science efforts. Following key elements of INSPIRE, our specific aims are to: 1) Identify the unique multilevel contextual factors (barriers and facilitators) across HIV settings (rural, urban, peri-urban) that influence HPV vaccine uptake; 2) Use Implementation Mapping to translate stakeholder feedback and findings from Aim 1 into a package of implementation strategies to integrate HPV vaccine into HIV clinics; 3) Conduct a Hybrid Type 3 effectiveness-implementation trial to evaluate the package of multilevel implementation strategies for integrating HPV vaccine into HIV clinics. DISCUSSION: Our research team has strong support, technical expertise, and resources (e.g., vaccines) from the Zambian Ministry of Health; and political will for scale-up. This stakeholder-based implementation model has the potential to be transported to HIV clinics across Zambia and serve as a model to address cancer prevention priorities for those with HIV in other LMICs. TRIAL REGISTRATION: To be registered prior to Aim 3, when implementation strategies finalized