Believing women: a qualitative exploration of provider disbelief and pain dismissal among women with interstitial cystitis/bladder pain syndrome from the MAPP research network.

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.

A Heart for the Care: Affect, Kin, and Care Work in a Zambian Hospital.

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.

Psychometric properties and predictive validity of the PP-ACT.

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 .

Linking cognitive and affective heuristic cues to interpersonal risk perceptions and behavior.

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.

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.

The adult in the room: The push and pull of parental involvement in research with children.

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.

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.

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.

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' 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.

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].

Complicating "the good result": narratives of colorectal cancer screening when cancer is not found.

OBJECTIVES: In this paper, we analyze narratives from a Photovoice project on colorectal cancer screening that was carried out with people who had undergone screening and were found to not have cancer. METHODS: Three groups, totaling eighteen participants, took part in the project, meeting multiple times over the course of approximately 10 weeks, and discussing photos they took about colorectal cancer screening. RESULTS: A common way in which the participants conveyed their screening experiences was through reflection on their own or other people's illnesses. Our findings highlight the multiple meanings of receiving a "good" or noncancerous screening result after undergoing cancer screening. CONCLUSION: Such findings suggest that framing noncancerous results only in terms of relief or other positive emotions may ignore the realities people and their families face and their remaining concerns. This paper has broader implications for policies to reduce cancer disparities as well as public health and patient-provider communication about screening.

Beyond Adherence: Health Care Disparities and the Struggle to Get Screened for Colon Cancer.

Dominant health care professional discourses on cancer take for granted high levels of individual responsibility in cancer prevention, especially in expectations about preventive screening. At the same time, adhering to screening guidelines can be difficult for lower income and under-insured individuals. Colorectal cancer (CRC) is a prime example. Since the advent of CRC screening, disparities in CRC mortality have widened along lines of income, insurance, and race in the United States. We used a community-engaged research method, Photovoice, to examine how people from medically under-served areas experienced and gave meaning to CRC screening. In our analysis, we first discuss ways in which participants recounted screening as a struggle. Second, we highlight a category that participants suggested was key to successful screening: social connections. Finally, we identify screening as an emotionally laden process that is underpinned by feelings of uncertainty, guilt, fear, and relief. We discuss the importance of these findings to research and practice.

Inequities in childhood cancer research: A scoping review.

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.

Managing children's asthma: what role do caregivers' mental representations of trigger and symptom management behaviors play?

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.

"ARVs" as sickness and medicine: examining children's knowledge and experience in the HIV era in urban Zambia.

Since the roll out of no cost antiretroviral drugs (ARVs) in health centers in Zambia in 2004, the number of Zambians receiving treatment has substantially increased. While research has addressed adult responses to ARVs in Zambia and elsewhere, there is little known about how children experience and respond to the presence of treatment in their communities and households. The increasing acknowledgment that children provide care and treatment support to people with HIV in their households demands a better understanding of children's knowledge of HIV and ARVs. To examine children's ARV knowledge, this article focuses on three children's workshops carried out with 38 children ages 8-12, who participated in a yearlong ethnographic study in 2007 and 2008. All children lived in a low-income and heavily HIV-affected residential area in Lusaka, and many children lived with parents or guardians who had HIV. Findings suggest that, when the children discussed ARVs, they made two intersecting points: (1) local conditions make living with HIV, even while on antiretroviral therapy (ART), difficult; and (2) children face particular challenges, concerns, and insecurities when caring for and living with the ill. Children's discussions about ARVs offer a deeper understanding of experiences of HIV and childhood in a disproportionately HIV-affected and low-resource area. Such insights might productively inform future programming and research aimed at assisting children and adults.

Children's roles in tuberculosis treatment regimes: constructing childhood and kinship in urban Zambia.

In Zambia, the burden of HIV-related diseases such as tuberculosis has received substantial international attention. Zambians experience and participate in a range of globally produced programs to manage TB and cure TB sufferers. Guided by WHO's Directly Observed Treatment, Short-course protocol, TB treatment regimens now emphasize adherence to medications as the primary way to achieve cure. This article aims to understand how adherence models enter into the daily lives of children who live with and care for adult TB patients in an area disproportionately affected by the disease. I suggest that children domesticate adherence models, using them as strategies to safeguard identities, relationships, livelihoods, and futures that are increasingly under threat in the age of HIV. They draw on TB treatment and the hope and agency it affords to hold onto a version of childhood in which they are cared for by adults who will advocate for their well-being.

Advancing Youth Participation to Inform Equitable Health Policy Comment on "Between Rhetoric and Reality: Learnings From Youth Participation in the Adolescent and Youth Health Policy in South Africa".

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.