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An integral part of understanding and then designing programs to reduce childhood cancer inequities includes adequate representation of people with cancer in research, including children. A scoping review was carried out to understand how cancer research is oriented toward inequities and to identify who has participated in childhood qualitative cancer research. A systematic search identified 119 qualitative studies that met inclusion criteria, with most studies taking place in high-income countries (n=84). Overall, data were lacking on social determinants of health at multiple levels-structural, household, child, and guardian. Only 29 studies reported on race and/or ethnicity, with the majority of those including predominantly or all white children. Six articles included socioeconomic information, and across most articles, attention was absent to the financial ramifications of cancer care. Limited reporting of sociodemographics highlights a broader issue of neglecting key demographics and social factors that contribute to inequities.
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OBJECTIVE: Pediatric asthma management is challenging for parents and guardians (hereafter caregivers). We examined (1) how caregivers mentally represent trigger and symptom management strategies, and (2) how those mental representations are associated with actual management behavior. METHODS: In an online survey, N = 431 caregivers of children with asthma rated 20 trigger management behaviors and 20 symptom management behaviors across 15 characteristics, and indicated how often they engaged in each behavior. RESULTS: Principal components analysis indicated 4 dimensions for trigger management behaviors and 3 for symptom management behaviors. Bayesian mixed-effects models indicated that engagement in trigger management behavior was more likely for behaviors rated as affirming caregiver activities. However, trigger management behavior did not depend on how highly the behavior was rated as challenging for caregiver, burdensome on child, or routine caregiving. Engagement in symptom management behavior was more likely for behaviors rated as affirming and common and harmless to the child, but was unrelated to how highly a behavior was rated as challenging for caregivers. CONCLUSION: These results suggest that interventions might be particularly useful if they focus on the affirming nature of asthma management behaviors. However, such interventions should acknowledge structural factors (e.g. poverty) that constrain caregivers' ability to act.
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INTRODUCTION AND HYPOTHESIS: Although allusions to the importance of a good physician-patient relationship are present throughout the interstitial cystitis/bladder pain syndrome (IC/BPS) literature, qualitative analysis of patients' perspectives on the clinical encounter is lacking, particularly among women who are most commonly affected by IC/BPS. Therefore, we adopted a patient-centered experiential approach to understanding female patients' perception of clinical encounters. METHODS: We re-analyzed previously collected data from a qualitative study on patient flare experiences including eight focus groups of female IC/BPS patients (n = 57, mean = 7/group). Qualitative analysis applied grounded theory to index all physician-patient interactions, then thematically coded these interactions to elucidate common experiences of clinical encounters. RESULTS: Women with IC/BPS shared common experiences of provider disbelief and pain dismissal. Discussions with participants demonstrated the extent to which these negative encounters shape patients' health care-seeking behavior, outlook, and psychosocial well-being. Appearing in more than one guise, provider disbelief and dismissal occurred as tacit insinuations, explicit statements, silence, oversimplification, and an unwillingness to listen and discuss alternative treatment. As a result, women adopted several strategies including: rotating specialists; "testing" physicians; self-advocacy; self-management; avoiding the stigma of chronic pain; crying; and opting for alternative medicine over biomedicine. CONCLUSIONS: The prevalence of provider disbelief and pain dismissal among women with IC/BPS indicates a need to improve physician-patient communication, informed by the struggles, anxieties, and gendered inequities that female patients with chronic pain experience in their diagnostic journey. Results suggest that further investigation into the power dynamics of clinical encounters might be required.
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Dolor Crónico , Cistitis Intersticial , Humanos , Femenino , Cistitis Intersticial/tratamiento farmacológico , Ansiedad , Grupos Focales , Investigación CualitativaRESUMEN
At the only standalone pediatric hospital in Zambia, patient wellbeing often rests in the hands of bedsiders. Bedsiders are caregivers, often family, who sit at the patient's bedside, feeding, cleaning them, and running medical errands. Bedsiders are critical human infrastructure for the hospital and its staff. In our research, we heard repeatedly that bedsiders must have a "heart" for caregiving, taking on unremunerated and exhausting informal labor. We draw on Wendland's "heart for the work," a phrase commonly used among healthcare workers in Malawi and Zambia describing the medical profession, to explore what this metaphor reveals about care.
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Personal de Salud , Hospitales , Niño , Humanos , Zambia , Antropología MédicaRESUMEN
Parental involvement in research where children are the primary study participants is frequent but under-analyzed. To understand such dynamics in research with children, we examined children's (ages 8-14) interactions with parents who came in and out of view during our virtual interviews in our study, Photographing Health by Rural Adolescents in the MidwEst (PHRAME). We identified the pull and push of this adult involvement-a choreography in which children were active participants. Our analysis demonstrates that such interactions provide important data about how children navigated power dynamics, and also offer integral insights on how they were doing health and care.
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BACKGROUND: Maintaining control of asthma symptoms is the cornerstone of asthma treatment guidelines in the United States. However, suboptimal asthma control and asthma exacerbations among young people are common and are associated with many negative outcomes. Interventions to improve asthma control are needed. For such interventions to be successful, it is necessary to understand the types of interventions that are appealing to caregivers of children with different levels of risk of exacerbation. OBJECTIVE: This study aimed to evaluate whether caregivers of children with high (vs low) risk of asthma exacerbation show different levels of interest in and preferences for potential intervention programs and delivery methods. METHODS: We contracted with Ipsos to administer a web-based survey to caregivers of children with asthma who were residing in the United States. Caregivers (N=394) reported their interest (1=not at all; 3=a lot) in 9 possible intervention programs and 8 possible intervention delivery methods. Caregivers also indicated their preferences by selecting the 3 intervention programs and 3 delivery methods that "most" interested them. Finally, caregivers completed 2 open-ended questions asking what other resources might be useful for managing their children's asthma. We classified children as having a high risk of exacerbation if they had an exacerbation in the past 3 months (n=116) and a low risk of exacerbation if otherwise (n=278). RESULTS: Caregivers reported higher levels of interest in all intervention programs and delivery methods if they cared for a child with a high risk rather than a low risk of exacerbation. However, regardless of the child's risk status, caregivers expressed the highest levels of interest in programs to increase their child's self-management skills, to help pay for asthma care, and to work with the school to manage asthma. Caregivers expressed the highest levels of interest in delivery methods that maintained personal control over accessing information (websites, videos, printed materials, and smartphone apps). Caregivers' preferences were consistent with their interests; programs and delivery methods that were rated as high in interest were also selected as one of the 3 that "most" interested them. Although most caregivers did not provide additional suggestions for the open-ended questions, a few caregivers suggested intervention programs and delivery methods that we had not included (eg, education about avoiding triggers and medication reminders). CONCLUSIONS: Similar interests and preferences among caregivers of children with high and low risk of exacerbation suggest a broad need for support in managing childhood asthma. Providers could help caregivers by directing them toward resources that make asthma care more affordable and by helping their children with asthma self-management. Interventions that accommodate caregivers' concerns about having personal control over access to asthma information are likely to be more successful than interventions that do not.
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OBJECTIVE: Parents and guardians (hereafter caregivers) make decisions for their children's medical care. However, many caregivers of children with asthma struggle to understand their child's illness. We used the psychometric paradigm to investigate how caregivers conceptualize, or mentally represent, asthma triggers and symptoms and how these representations are linked to perceived asthma exacerbation risk. METHODS: We asked 377 caregivers of children with asthma across the U.S. to rate 20 triggers or 20 symptoms along 15 characteristics. Caregivers also indicated their perceived risk of their child having an asthma exacerbation (hereafter interpersonal risk perceptions). Using principal components analysis, we extracted key dimensions underlying caregivers' ratings on the characteristics. Then we related the triggers' and symptoms' scores on the dimensions to caregivers' interpersonal risk perceptions. RESULTS: Interpersonal risk perceptions were higher for triggers with high ratings for the dimensions severe and relevant, and negative affect-yet manageable, but not chronic-yet unpredictable. Risk perceptions were also higher for symptoms with high ratings for the dimensions severe and unpredictable, and relevant and common, but not self-blame or manageable despite unknown cause. CONCLUSION: By identifying key dimensions underlying caregivers' mental representations of asthma triggers and symptoms, these findings can inform a new approach to asthma education.
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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.
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Infecciones por VIH , Infecciones por Papillomavirus , Vacunas contra Papillomavirus , Neoplasias del Cuello Uterino , Femenino , Adolescente , Humanos , Zambia/epidemiología , Infecciones por Papillomavirus/complicaciones , Infecciones por Papillomavirus/prevención & control , Neoplasias del Cuello Uterino/epidemiología , Neoplasias del Cuello Uterino/prevención & control , Vacunación , Vacunas contra Papillomavirus/uso terapéutico , Infecciones por VIH/epidemiología , Infecciones por VIH/prevención & controlRESUMEN
INTRODUCTION: Of the family members providing care, in the United States over 5.4 million are young people (<18 years of age) and they are the caregivers receiving the least support overall. Given the need to support cancer survivors through a family-centered practice approach, this lack of support and intervention for young caregivers represents a substantial gap in cancer care. In this study, we will adapt a young caregivers intervention, YCare, with young caregivers in families affected by cancer in order to advance support for families in cancer settings. YCare is an intervention that improves the support young caregivers provide through a peer-engaged, multidisciplinary model but has previously not been studied in the cancer care setting. METHODS: Guided by the updated Consolidated Framework for Implementation Research (CFIR) we will engage stakeholders (i.e., young caregivers, cancer survivors, health care providers) using qualitative (i.e., one-on-one semi-structured interviews) and arts-based methods. Stakeholders will be recruited via cancer registries and community partners. Data will be analyzed descriptively using deductive (e.g., CFIR domains) and inductive (e.g., cancer practice settings) approaches. DISCUSSION: The results will indicate the critical components for adapting the YCare intervention to the cancer practice context including new intervention elements and key characteristics. Adapting YCare to a cancer context will address a critical cancer disparity issue.
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Supervivientes de Cáncer , Neoplasias , Humanos , Adolescente , Cuidadores , Personal de Salud , Investigación Cualitativa , Neoplasias/terapiaRESUMEN
People often use cognitive and affective heuristics when judging the likelihood of a health outcome and making health decisions. However, little research has examined how heuristics shape risk perceptions and behavior among people who make decisions on behalf of another person. We examined associations between heuristic cues and caregivers' perceptions of their child's asthma risk, the frequency of caregivers' asthma management behaviors, and child health outcomes. We used Ipsos KnowledgePanel to recruit 814 U.S. adult caregivers of children with asthma of the age <18 years. Participants completed a survey at baseline (T1) and 3 months later (T2). Caregivers who, at T1, reported greater negative affect about their child's asthma (affect heuristic cue), greater ease of imagining their child experiencing asthma symptoms (availability heuristic cue), and greater perceived similarity between their child and a child who has ever experienced asthma symptoms (representativeness heuristic cue) reported statistically significantly (p < 0.05) higher interpersonal perceived risk of their child having an exacerbation or uncontrolled asthma at T1. They also indicated at T2 that their child had poorer asthma control and more frequent exacerbations. Greater T1 negative affect was associated with more frequent T2 actions to reduce inflammation, manage triggers, and manage symptoms, and with poorer T2 child health outcomes. Heuristic cues are likely important for interpersonal-not just personal-risk perceptions. However, the interrelationship between caregivers' ratings of heuristic cues (in particular, negative affect) and risk judgments may signify a struggle with managing their child's asthma and need for extra support from health care providers or systems.
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Asma , Señales (Psicología) , Niño , Adulto , Humanos , Adolescente , Heurística , Asma/psicología , Percepción Social , CogniciónRESUMEN
Rural residents in underserved areas face many barriers to health services, including colonoscopies for colorectal cancer (CRC) screening, but rural healthcare providers may assist patients navigating these challenges due to familiarity with local contexts. In 2017 to 2018, we interviewed clinical practitioners and staff (n = 40) at 13 primary care and gastroenterology locations across rural Southern Illinois. We used a semi-structured interview guide that addressed system, provider, and patient levels including domains related to barriers, facilitators, and needs for intervention. This article focuses on 3 main elements related to distance and transportation that emerged from inductive coding. First, providers described long distance travel for care as normalized but not necessarily preferable. Second, they identified and described distance-related challenges specific to CRC screening, and third, providers discussed strategies, mostly related to transportation, they use to navigate those challenges. Finally, they suggested a variety of broader solutions to reduce distance and transportation barriers to screening. Overall, distance to care remains a challenge to increasing CRC screening and contributes to disparities in rural communities. To increase early detection and reduce rural cancer disparities, efforts to increase screening and follow-up must address ways to help patients and providers navigate this distance within their local communities and contexts.
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Neoplasias Colorrectales , Accesibilidad a los Servicios de Salud , Humanos , Población Rural , Detección Precoz del Cáncer , Neoplasias Colorrectales/diagnóstico , Neoplasias Colorrectales/prevención & control , IllinoisRESUMEN
OBJECTIVE: The Parent Proxy Asthma Control Test (PP-ACT) is a self-report measure of asthma control completed by caregivers on behalf of a child. We examined the psychometric properties and the reliability and predictive validity of the PP-ACT. METHODS: We conducted two studies (one cross-sectional, one longitudinal over three months) that surveyed caregivers (N = 1622) of children with asthma. Caregivers completed the PP-ACT and a variety of other measures, including child health outcomes. RESULTS: We found clear evidence that the five-item PP-ACT assesses two distinct constructs: Items 1-4 (which we call the PP-ACT4) assess symptoms, impairment, and use of a short acting beta-2 blocker (albuterol); Item 5 assesses caregivers' global subjective assessment of their child's asthma control. In addition, the two constructs function as unique predictors of asthma outcomes. Both the PP-ACT4 and Item 5 predicted unique variance in ED visits, the number of symptom-free days, and child quality of life. Only the PP-ACT4 predicted frequency of ICS use and only at Time 1 in Study 1. Conversely, Item 5 predicted exacerbation frequency whereas the PP-ACT4 did not. CONCLUSION: Our findings suggest that researchers and clinicians should treat the PP-ACT4 and Item 5 as distinct indicators of asthma control because they differentially predict asthma outcomes and likely have distinct meanings to caregivers.Supplemental data for this article is available online at https://doi.org/10.1080/02770903.2022.2036755 .
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Asma , Calidad de Vida , Niño , Humanos , Asma/diagnóstico , Asma/tratamiento farmacológico , Psicometría , Estudios Transversales , Reproducibilidad de los Resultados , Encuestas y Cuestionarios , Cuidadores , PadresRESUMEN
Pediatric asthma management in the U.S. is primarily oriented around caregivers. As evident in policy, clinical literature and provider practices, this caregiver-centric approach assumes unidirectional transfer of practices and knowledge within particular relational configurations of physicians, caregivers, and children. Reflecting broader societal values and hierarchies, children are positioned as passive recipients of care, as apprentices for future citizenship, and as the responsibility of parents who will train them in the knowledge and labor of asthma management. These ideas, though sometimes contradictory, contribute to a systemic marginalization of children as participants in their health care, leaving a conceptual gap regarding children's inclusion in chronic illness management: what children's roles in their health care are or should be. We address this conceptual gap by asking, what does pediatric asthma management look like when we center children, rather than caregivers in our lens? We draw data from a study of asthma management in St. Louis, Missouri, and Gainesville, Florida, which included 41 caregivers, 24 children, and 12 health-care providers. By asking children to show us how they manage asthma, we find that children actively co-construct health practices within broader interdependencies of care and the structural constraints of childhoods.
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Asma , Automanejo , Humanos , Niño , Estados Unidos , Padres , Asma/terapia , Cuidadores , Personal de SaludRESUMEN
In their published study, Jacobs and George examine how youth participation was enabled to advance the Adolescent and Youth Health Policy (AYHP) in South Africa. Using an expanded and adapted conceptual framework of youth participation to inform their work, their findings center on the complexities of youth participation including enablers and the challenges experienced in the South African context. Building upon their foundational work, in this commentary we suggest further insights for consideration to advance youth participation to inform equitable health policies, including the inclusion of youth with intersecting identities and critical reflection to further advance the adapted conceptual framework.
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Política de Salud , Aprendizaje , Adolescente , Humanos , SudáfricaRESUMEN
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's 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's 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's 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' perceptions of their child's 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's 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.
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Objective: We examined the extent to which caregivers of children with asthma used interpersonal comparisons-a novel comparison process that parallels social comparison and temporal comparison-to form judgments about their child. Methods & Measures: Using semi-structured interviews adapted from the McGill Illness Narrative Interview, we examined the interpersonal comparisons that caregivers of a child with asthma (n = 41) made regarding their child. Results: Interpersonal comparisons influenced caregiver thoughts, feelings, and behavior. They helped caregivers distinguish asthma from other breathing problems, evaluate the severity of the asthma, and understand their child's experience. However, they also created uncertainty by highlighting the complex, unpredictable nature of asthma. Interpersonal comparisons were a source of gratitude and hope, but also worry and frustration. Finally, interpersonal comparisons influenced caregivers' decisions and actions, resulting in decisions that aligned with and, at times, ran counter to biomedical models of asthma care. In some instances, caregivers used interpersonal comparisons to motivate their child's behavior. Conclusion: The interpersonal comparisons served as a source of information for caregivers trying to understand and manage their child's asthma. Investigating these comparisons also expands how we think about other comparison theories.
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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.
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Niños con Discapacidad , Adulto , Niño , Humanos , Investigación CualitativaRESUMEN
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' 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.
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COVID-19 , Servicios de Salud Rural , COVID-19/prevención & control , Humanos , Pandemias , Investigación Cualitativa , Población Rural , Servicio SocialRESUMEN
BACKGROUND: Children are the focus of numerous health interventions throughout the world, yet the extent of children's 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's 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'Malley's 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's meaningful participation, topical, geographical, and methodological gaps were identified, as was the need to strengthen researchers' skills in interpreting and representing children's 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.
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Atención a la Salud , Adulto , Niño , Humanos , Investigación CualitativaRESUMEN
In the United States, pediatric asthma is distributed geographically across lines of racialized segregation. We draw on emplacement, or the theory that embodied experiences and the material world are mutually informed, to situate such geographic trends within the narratives of 41 caregivers of children with asthma. Results suggest that caregivers identified and managed asthma-related risk with regard to the relational and structural conditions of three categories of locations: (1) houses, (2) neighborhoods, and (3) schools and other childhood institutions. Within each type of location, caregivers used emplaced knowledge and emplaced caregiving tactics to respond to asthma-related risk. Based on our findings, we identify critical intervention topics that are consistent with families' everyday lived experiences of place.