Breathing Together: Children Co-constructing Asthma Self-Management in the United States.

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.

What is the state of children's 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'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.

How do embodied experiences of asthma influence caregiver conceptual models?

RATIONALE: Many studies propose that patients', caregivers', and children's asthma management practices may diverge from biomedical recommendations because their understandings of asthma (i.e., conceptual models) are different from biomedical perspectives. However, little research in this area has examined conceptual models of asthma using embodiment theory, which suggests that caregivers' and children's experiences of the physical body shape their perspectives and consequent management strategies. OBJECTIVE: We investigated how two embodied processes of symptom perception-detection and interpretation-may influence caregiver or patient conceptions of asthma. METHODS: We interviewed 41 caregivers of children with asthma in Gainesville, Florida, and St. Louis, Missouri, and conducted ethnographic visits or virtual interviews with 19 children with asthma aged 6-16. RESULTS: Four aspects of asthma's embodied experience shaped conceptual models via processes of detection and interpretation: 1) symptoms are experienced in the context of other bodily processes; 2) acute symptoms and exacerbations are more salient than their absence; 3) the embodied experience of asthma is one of integrated physiological and emotional processes; and 4) caregivers and children acquire embodied practices of perceiving symptoms that produce embodied knowledge. CONCLUSION: Participant narratives suggest that embodied experiences of asthma shape caregivers' and children's understandings of asthma in ways that differ from the biomedical model. We argue that a focus on embodied experiences may provide important ground for mutual understanding and communication between providers and caregivers and/or patients.

Situating household management of children's asthma in the context of social, economic, and environmental injustice.

BACKGROUND: Structural determinants of health are social, economic, and environmental forces that generate unequal opportunities for resources and unequally distribute exposure to risk. For example, economic constraint, racial discrimination and segregation, and environmental injustice shape population-level asthma prevalence and severity. Structural determinants are especially relevant to consider in clinical settings because they affect everyday household asthma management. OBJECTIVE: To examine how structural determinants shape everyday household management of pediatric asthma and offer a framework for providers to understand asthma management in social context. DESIGN: Qualitative interviews of caregivers for children with asthma. PARTICIPANTS: Participants included 41 caregivers in two U.S. cities: St. Louis, Missouri (n = 25) and Gainesville, Florida (n = 16). Most caregivers were women (83%), Black (73%) and/or had low socioeconomic status (SES; 78%). Caregivers cared for children with asthma aged 0-4 (32%), 5-11 (68%) and 12-17 (54%). APPROACH: We carried out narrative interviews with caregivers using an adapted McGill Illness Narrative Interview and using qualitative analysis techniques (e.g. inductive and deductive coding, constant comparison). KEY RESULTS: Caregivers highlighted three ways that structural determinants complicated asthma management at home: 1) housing situations, 2) competing household illnesses and issues, and 3) multi-household care. CONCLUSIONS: By connecting social, economic, and environmental injustices to the everyday circumstances of asthma management, our study can help providers understand how social contexts challenge asthma management and can open conversations about barriers to adherence and strategies for supporting asthma management at home. We offer recommendations for medical system reform, clinical interactions, and policy advocacy.

Not Breathing Easy: "Disarticulated Homework" in Asthma Management.

Recent health policy in the United States encourages an outsourcing of labor from professional practice into domestic spaces, where in theory, medical professionals supply the training, technologies, and guidance needed to discharge responsibility for care to patients or caregivers. Mattingly et al. (2011) term this labor "chronic homework," describing the relationship between the assigning and undertaking of medical care at the borders of professional and domestic domains. This is a system predicated on relationships between professional and caregiver. However, in our research with families and providers in two U.S. sites, we observed a "disarticulation" of asthma care from professional medicine. Caregivers may undertake routine asthma management with little physician oversight, transforming chronic homework into what we term "disarticulated homework." We argue that expanding the concept of chronic homework to theorize disarticulation processes can help elucidate how health disparities are reproduced in the gap between medical systems and domestic life. [asthma, self-management, caregiving pharmaceuticalization, health disparities].

Beyond awareness: Towards a critically conscious health promotion for rheumatic fever in Aotearoa, New Zealand.

Since 2014, the Rheumatic Fever Prevention Programme has targeted communities in Aotearoa, New Zealand affected by high rates of rheumatic fever (RF): namely, Maori and Pacific families. Initiated with the aim of reducing ethnic health disparities, the Health Promotion Agency attempted to use culturally appropriate approaches by engaging in consultative processes with Maori and Pacific communities and health leaders in developing the intervention. However, these consultations largely focused on evaluating strategies for reaching "priority" audiences with the message to get sore throats checked and on changing health-seeking behaviours. There was little regard for what the structural roots of RF in Aotearoa might suggest about equitable interventions, nor for the potentially harmful effects of the messages and their presentation. The concept of structural violence can be a useful analytical tool to critically evaluate such interventions which attempt to address health disparities but do not meaningfully attend to equity. Drawing on three ethnographic studies with: 1) Northland Maori families (Anderson et al., 2015); 2) North Island Maori and Pacific families (Anderson et al., 2017); and 3) Maori and Pacific children at a South Auckland school (Spray, 2020), we show how recategorising RF disparities as expressions of violence reveals how, despite including cultural consultation, interventions may still inequitably distribute responsibility. In particular, by responsibilising communities affected with the highest rates of RF, the intervention creates collateral damage of stigma, internalised blame, emotional suffering and hypervigilance that reproduces structural violence. We suggest that attending to how families experience public health messaging in the context of their daily lives may guide a more critical and culturally safe health promotion that looks beyond awareness and behaviour and towards equity.

Mismatches between health service delivery and community expectations in the provision of secondary prophylaxis for rheumatic fever in New Zealand.

OBJECTIVE: Rheumatic fever (RF) recurrence prevention requires secondary prophylaxis for at least ten years. However, recurrences of rheumatic fever (RRF) persist disproportionately affecting Maori and Pacific youth. Reasons for recurrence rates are not well understood and commonly attributed to patient non-adherence. This research explored Maori and Pacific family experiences of RRF to better understand barriers to accessing secondary prophylaxis to inform health service improvements. METHODS: Participants were Maori and Pacific patients who had RRF or unexpected rheumatic heart disease and their family; and health professionals working in RF contexts. Kaupapa Maori, Talanga and Kakala Pacific qualitative methodologies were employed. Data were thematically analysed using a general inductive approach. RESULTS: Data collection included 38 interviews with patients and families (n=80), six focus group interviews and nine interviews with health providers (n=33) from seven geographic regions. Three key themes were identified where mismatches occurred between services and community needs: 1. Model of delivery; 2. Interpersonal approaches to care; and 3. Adolescent care. Conclusions and Public health implications: Successful RRF prevention requires interventions to address structural causes of inequity, appropriate clinical guidelines and quality health services. Service-delivery models should provide regular prophylaxis in an accessible manner through culturally-safe, community-based, age-appropriate care.

Social group dynamics predict stress variability among children in a New Zealand classroom.

Previous research proposes stress as a mechanism for linking social environments and biological bodies. In particular, non-human primate studies investigate relationships between cortisol as a measure of stress response and social hierarchies. Because human social structures often include hierarchies of dominance and social status, humans may exhibit similar patterns. Studies of non-human primates, however, have not reached consistent conclusions with respect to relationships between social position and levels of cortisol. While human studies report associations between cortisol and various aspects of social environments, studies that consider social status as a predictor of stress response also report mixed results. Others have argued that perceptions of social status may have different implications for stress response depending upon social context. We propose here that characteristics of children's social networks may be a better predictor of central tendencies and variability of stress response than their perceptions of social status. This is evaluated among 24 children from 9.4 to 11.3 years of age in one upper middle-class New Zealand primary school classroom, assessed through observation within the classroom, self-reports during semi-structured interviews and 221 serial saliva samples provided daily over 10 consecutive school days. A synthetic assessment of the children's networks and peer-relationships was developed prior to saliva-cortisol analysis. We found that greater stability of peer-relationships within groups significantly predicts lower within-group variation in mid-morning cortisol over the two-week period, but not overall within-group differences in mean cortisol.