Acculturation and quality of life in urban,African American caregivers of children with asthma

Objective: Racial/ethnic minority caregivers of children with asthma are at risk for low levels of quality of life (QOL). Limited research has identified factors that contribute to lower QOL among African American caregivers. This study examined associations between acculturation (e.g., engaging in values/beliefs traditional of one's culture versus adopting mainstream cultural views) and caregiver QOL in low-income, urban African American families of children (7–12 years) with persistent asthma. We also investigated the association between caregiver QOL and child emergency department (ED) use. Methods: Fifty-five caregivers and their children completed interview-based questionnaires in a single research session. Caregivers completed the Pediatric Asthma Caregiver Quality of Life Questionnaire (PACQLQ), the African American Acculturation Scale-Revised (AAAS-R), and reported on child asthma variables. Children completed items assessing asthma control. Results: Higher overall QOL and emotional function subscale scores were associated with more traditional African American religious beliefs/practices (r = .288, p = .033; r = .333, p = .013). Higher emotional function subscale scores were associated with more traditional values of African American families (r = .306, p = .023). Lower QOL was found among caregivers of children who had visited the ED three or more times in the last year. Conclusions: Less acculturation tied to religious beliefs/practices and family values (as measured by the AAAS-R) may serve a protective role in reducing the burden low-income, urban African American caregivers experience in managing child asthma. This study is the first of its kind to study acculturation in African American caregivers of children with asthma.     

Path to health asthma study: A survey of pediatric asthma in an urban community

Objective: Minority children with asthma who live in low-income urban communities bear a disproportionate burden of the disease. This study explores the perceived health care needs related to asthma care, identifies asthma triggers, potential barriers to care, and assesses the need for additional community resources. Methods: We conducted a cross-sectional survey of Hispanic and African American adults (n = 53) who take care of a child with asthma and live in an urban community of North Philadelphia. Input from community leaders was obtained in the development the survey tool resulting in a unique ‘community-centric’ questionnaire. The survey was also available in Spanish. All surveys were conducted in the community setting. Results: Variables were used to measure asthma severity and triggers. Children were categorized with intermittent (n = 24, 45.3%), mild persistent (n = 13, 24.5%), or moderate-to-severe persistent asthma (n = 16, 30.2%). Most children with persistent asthma were enrolled under Medicaid or CHIP (n = 24, p = 0.011) and reflected a low-income socioeconomic status. Persistent asthma was found to be associated with most triggers: pets, dust mites, mice, mold, and cockroaches. There was no significant association between environmental tobacco smoke and persistent asthma. Children with persistent asthma and 2 or more triggers were more likely to be hospitalized and go to the Emergency Department. Conclusion: Urban minority children living in low-income communities face neighborhood-specific asthma triggers and challenges to care. Studies conducted in urban neighborhoods, with collaboration from community members, will highlight the need of comprehensive services to account for community-centric social determinants.     

Caregiver depression and perceptions of primary care predict clinic attendance in head start children with asthma

Objective: The purpose of this study is to evaluate the mediating role of perceptions of primary care (PC) on the association between depression and PC clinic attendance among caregivers of children with asthma. In adults, depression is associated with lower PC clinic attendance and ～25% of mothers presenting to a pediatric PC clinic will screen positive for depression. Adults’ perceptions about their medical care mediate the depression-clinic attendance relation, but this has not been tested in children or in an asthma population. Methods: This is a secondary prospective data analysis of 141 caregivers of Head Start children diagnosed with asthma, offered an intervention to reduce barriers to PC. Caregivers rated their depressive symptoms and perceptions of PC (access, provider contextual knowledge, and continuity of care) at baseline. PC clinic attendance was tracked prospectively for 6-months. Results: At baseline, 26% of caregivers screened positive for depression. Within 6-months, 66% of children attended a PC appointment. A positive depression screen was not associated with PC attendance (p?=?0.07) or continuity of care (p?=?0.98) but was inversely associated with perceptions of both access (p?=?0.03) and provider contextual knowledge (p?=?0.02). Though the total indirect effect was not significant, the specific indirect effect of depression on PC attendance through access was significant (95% CI: 0.01, 0.68). Conclusions: Providing tangible resources to reduce barriers to PC without addressing perceptions of access may not sufficiently improve PC clinic attendance in pediatric asthma. Screening caregivers for depression may identify families requiring targeted interventions to improve their perceptions of access.     

Medication use,sleep, and caregiver smoking status among urban children with asthma

Objective: Children living in urban settings from low-income, minority families are at a high risk for experiencing asthma morbidity. Environmental tobacco smoke (ETS, i.e., secondhand) exposure, typically from caregiver smoking, has been associated with increased quick-relief medication use and child nocturnal awakenings due to increased asthma symptoms as well as worse sleep quality in children with asthma. This study investigated the moderating role of caregiver smoking status on the association between quick-relief medication use and child's sleep quality in urban children with persistent asthma. Methods: Fifty-four urban children with persistent asthma and their primary caregivers completed a baseline research session. Caregivers then completed ecological momentary assessment surveys via smartphones twice daily for two weeks in which smoking behaviors, child quick-relief medication use, and child's sleep quality were assessed. Results: Twenty caregivers (37%) reported smoking at least one day across the two-week period. The caregiver smoking status significantly moderated the association between quick-relief medication use and child's sleep quality after controlling for child age and monthly household income. The caregiver smoking status exacerbated the association between quick-relief medication use and child's sleep quality, such that more medication usage was associated with worse sleep quality. Conclusions: Findings suggest that in urban families with a caregiver who smokes, more daily quick-relief medication use may put children at an increased risk for worse sleep quality. The effects of ETS exposure on child's sleep quality in addition to child asthma symptoms should be an integral part of discussions between pediatric healthcare providers and families of children with asthma.     

Exploring the barriers and incentive architecture for modifying smoke exposures among asthmatics

Background: The socio-structural barriers for reducing secondhand smoke exposure (SHSe) among children with asthma may be insurmountable for low-income caregivers. Health promoting financial incentives (HPFIs) are increasingly being used in the adult population to motivate and sustain tobacco-reduction behaviors. We assessed barriers to SHSe reduction and means to overcome them through the design of an HPFI-based, caregiver-targeted SHSe reduction study. Methods: Using a mixed-methods design, we conducted semi-structured in-depth interviews among low-income primary caregivers of children with asthma residing in Baltimore City. Quantitative data using an online survey were used to augment interview findings. Results: Home smoking restrictions were a frequently referenced strategy for decreasing SHSe, but interviewees (n?=?22) described the complex social pressures that undermine reduction efforts. Caregivers redirected conversations from broadly implemented smoking bans towards targeted reduction strategies among mothers and members of their social network who are active smokers. Participants converged on the notion that sustainable SHSe reduction strategies are realizable only for mothers who are active smokers, possess high self-efficacy and social structures that promote cessation. Survey data (n?=?56) clarified the multiple contexts that underlie pediatric SHSe and preferred HPFI architecture that included fixed, recurrent payments contingent on reduced nicotine biomarkers and completion of basic asthma education classes. Conclusions: Based on the combined analyses, we envision testing a HPFI-based study design whose optimal target population included low-income caregivers and members of their social network where incentives are tied to pediatric biomarkers and asthma education—an integrated approach that has not yet been used in pediatric tobacco studies.     

Concordance among children,caregivers, and clinicians on barriers to controller medication use

Objective: While much research has addressed asthma medication adherence, few have combined quantitative and qualitative data, and none has addressed the triad of child, caregiver, and clinician simultaneously. This study assessed, with mixed methods, barriers to medication adherence within this triad. Methods: We conducted interviews with publicly-insured children with asthma, their caregivers, and their primary-care clinicians. Children (7–17 years) had been prescribed daily inhaled corticosteroids and visited the ED for asthma (past year). Participants answered open-ended and survey questions, rating suggested barriers to medication use (never vs. ever a barrier). McNemar's tests compared report of barriers by each group (children, caregivers, clinicians), and assessed concordance within triads. Results: Fifty child–caregiver dyads participated (34 clinicians). Children (40% female; median age 10 years) had mostly non-Hispanic black (90%) caregivers with less than or equal to high-school education (68%). For barriers, children and clinicians were more likely than caregivers to report medications running out. Clinicians were also more likely to cite controllers being a “pain to take” (vs. children) and forgetfulness (vs. caregivers) (all p < .05). There was a lack of within-triad concordance regarding barriers to adherence, especially regarding medication running out, worrying about taking a daily medication, and medication being a pain to take. Qualitative data revealed themes of competing priorities, home routines, and division of responsibility as prominent contributors to medication adherence. Conclusions: There was significant disagreement among children, caregivers, and clinicians regarding barriers to daily use of asthma medications. To tailor asthma management conversations, clinicians should understand family-specific barriers and child–caregiver disagreements.     

A qualitative study of parent perspectives on barriers,facilitators and expectations for school asthma care among urban,African-American children

Objectives: Minority children experience the disproportionate burden of asthma and its consequences. Studies suggest ethnic groups may experience asthma differently with varied perceptions and expectations among parents of African-American and Latino children. Because parents coordinate asthma care with the school, where children spend a significant amount of their day, this study’s goal was to determine parents’ perspectives on school asthma management. Methods: Focus groups were conducted with parents of children with asthma at four urban schools whose student population is predominantly African-American. A semi-structured guide was utilized focusing on barriers, facilitators and expectations for asthma care at school. Grounded theory principles were applied in this study. Results: Twenty-two parents (91% females) representing 13 elementary and 10 middle school children with asthma (61% boys) participated in four focus groups. Most children (87%) had persistent asthma. The identified barriers to effective school-based asthma care included limited awareness of children with asthma by teachers/staff, communication issues (e.g. school/parent, within school), inadequate education and lack of management plans or systems in place. In contrast, the identified facilitators included steps that fostered education, communication and awareness, as supported by management plans and parent initiative. Parents described their expectations for increased communication and education about asthma, better systems for identifying children with asthma, and a trained asthma point person for school-based asthma care. Conclusions: Parents of children with asthma identified important barriers, facilitators and expectations that must be considered to advance school asthma management. Improved school-based asthma care could lead to better health and academic outcomes.     

Evaluation of MDI-spacer utilization and technique in caregivers of urban minority children with persistent asthma

Objective: Incorrect Metered-Dose Inhaler (MDI)-spacer technique can result in decreased drug delivery to distal airways and poor asthma outcomes. There is lack of research to examine whether the caregivers utilize proper technique when applying an MDI-spacer delivery system for young minority children with persistent asthma in the United States. The objective of this study was to evaluate MDI-spacer utilization and technique among the caregivers of Bronx minority children with persistent asthma and to determine characteristics associated with correct use. Methods: We analyzed data from 169 caregivers of urban minority children with persistent asthma (aged 2–9 years). MDI-spacer device technique was assessed using a 10-step checklist derived from the national guidelines, literature and manufacturers’ instructions. Based on the median MDI-technique score of six steps demonstrated accurately, caregivers were categorized as correct (seven or more) or incorrect (six or less) users. Results: Of the 169 caregivers, 95% were mothers, mean age 32.3 years (SD 7.6), 56% were unemployed; 74% of the children were Hispanic, 87% had either “not well controlled” or “very poorly controlled” asthma, 92% had a spacer at home and 71% used it “all” or “most” of the time. Only one caregiver correctly demonstrated all 10 steps of the MDI-spacer technique. Child’s having one or more asthma-related hospitalizations in the past 12 months and higher caregiver educational level were independent predictors of correct MDI-spacer technique. Conclusions and relevance: The caregivers of urban, minority children with persistent asthma lack proper MDI-spacer technique, suggesting the potential value of both targeted short- and long-term educational interventions.     

Goals,Beliefs, and Concerns of Urban Caregivers of Middle and Older Adolescents with Asthma

Objective: Caregiver goals, an integral part of a partnership for asthma management, have been found to influence asthma outcomes in children. These goals are likely to change during the transitional period of adolescence to address the needs of teenagers as they mature and assume greater responsibilities for their own care. Little is known about the goals, beliefs, and concerns of caregivers as they begin to shift responsibilities for asthma management to teens. This study sought to identify the asthma management goals, beliefs, and concerns of primarily African American caregivers of urban middle and older adolescents. Methods: Fourteen caregivers of urban African American adolescents aged 14–18 years with asthma participated in a focus group session. An iterative process was used to identify themes from the session related to asthma management goals, concerns, and beliefs of caregivers. Results: Caregivers identified goals that related to supporting their teens’ progress toward independent asthma self-management. They described significant concerns related to the teens’ ability to implement asthma self-management, especially in school settings. Caregivers also revealed beliefs that represented knowledge deficits related to asthma medications and factors that improved or worsened asthma. Most caregivers identified grave concerns about school policies regarding asthma medication administration and the lack of knowledge and support provided by teachers and staff for their teen. Conclusion: Caregivers are an invaluable resource in the care of adolescents with asthma. An opportunity exists to improve caregiver understanding of asthma medications and to provide support through improvements in asthma care for adolescents in school-based settings.     

The relationship between patient–provider communication and quality of life for children with asthma and their caregivers

Abstract

Objective: This study examined whether patient–provider communication is associated with asthma-related quality of life (QOL) and asthma outcomes among children with asthma and their caregivers. Methods: Children ages 8–16 years with asthma and their caregivers (n?=?296) were recruited at five pediatric practices in North Carolina. Children and caregivers reported demographic and clinical characteristics immediately after an audio-taped medical visit with their health care provider. During a home visit that took place 1 month after the medical visit, children and caregivers reported asthma-related QOL, and caregivers reported child asthma outcomes, including asthma symptom days and missed school days. Generalized estimating equations were used to determine whether patient–provider communication during the medical visit was associated with child and caregiver QOL and child asthma outcomes 1 month later. Results: On average, providers asked caregivers 4.5 questions and asked children 3 questions per visit, whereas caregivers and children asked less than 1 question per visit. Providers asked children more asthma-related questions, caregivers reported better QOL and fewer asthma symptom days 1 month later. Children and caregivers with higher asthma-management self-efficacy at the office visit reported better QOL 1 month later. Conclusions: Mirroring national guideline recommendations, our results suggest that providers should ask children about their asthma during medical visits. Future longitudinal studies should conduct mediation analyses to determine whether asking children asthma-related questions during medical visits increases children’s asthma management self-efficacy and ultimately improve outcomes, such as QOL, health care utilization, symptom days and missed school days.     

Asthma,tobacco smoke and the indoor environment: a qualitative study of sheltered homeless families

Objective: Asthma is common in homeless children with an incidence of 28–40%. There are few published studies investigating asthma in homeless children. This study examines the perspectives of both caregivers and shelter staff regarding challenges and opportunities of caring for children with asthma. Methods: A focus group of sheltered parents (n?=?10) with children who have asthma was conducted to identify barriers to optimal asthma management. Key informant interviews (n?=?6) were conducted with shelter staff to discuss the shelter systems and policies to address childhood asthma. Data were audio-recorded and transcribed. A representative analysis team performed qualitative theme analysis. Results: Key themes across 5 domains were identified: asthma education, access to asthma medication and equipment, asthma action plans, structural barriers to asthma management and environmental triggers. Parents identified multiple asthma triggers present in the shelter environment but cited lack of control as a barrier to remediation. Shelter staff desired elimination of asthma triggers but refer to the lack of resources as the primary barrier. Shelter staff favored a smoking ban on shelter property but named challenges to policy implementation. Both parents and staff identified asthma education and increased access to medications would be helpful. Conclusions: Policies to reduce environmental exposures, such as a smoking ban, to asthma triggers has the potential to improve the health of sheltered children with asthma.     

Children with asthma and their caregivers help improve written asthma action plans: A pilot mixed-method study

Objective: The objectives of this study were to (a) qualitatively examine caregiver and child feedback about a gold standard written asthma action plan (WAAP), and (b) determine whether having an asthma action plan was associated with child and caregiver self-efficacy in managing an exacerbation. Methods: This was a cross-sectional analysis of structured interviews with 22 children with persistent asthma that collected feedback about the WAAP as well as self-efficacy. An analysis of interviews used the constant comparative method to identify themes of child and caregiver statements. Caregivers completed a questionnaire that measured asthma management self-efficacy, barriers to managing asthma, and belief in the treatment efficacy using validated scales. Results: Approximately 36% of the caregivers reported having a WAAP for their child from their child's pediatrician. Most caregivers stated that having pictures would improve the WAAP, while most children stated that the layout needed to be improved by adding more space between the sections. Caregivers who reported knowing what the asthma action plan was had greater self-efficacy than caregivers who did not (z = ?1.99, p = 0.047). Conclusions: Re-designing the current WAAP layout and including pictures of inhalers may promote patient understanding. Future research needs to examine if a re-designed WAAP improves asthma management of children with asthma and their caregivers.     

Family caregivers' reported nonadherence to the controller medication of asthma in children in Casablanca (Morocco): Extent and associated factors

Objective: Recent statistics show a relatively high prevalence of asthma among Moroccan children and a weak control over their symptoms. To our knowledge, no research has been carried out to document adherence to the controller treatment in this population. This study aims 1) to assess the extent of children's nonadherence to the controller treatment of asthma in an urban region of Morocco as reported by a family caregiver, and 2) to identify the associated factors. Methods: We conducted a cross-sectional study among caregivers of asthmatic children (2–12 years old) in different health and education facilities of Casablanca-Settat. We administered face-to-face questionnaires incorporating validated instruments (Medication Adherence Rating Scale-Asthma (MARS-A), Beliefs about Medicines Questionnaire (BMQ), Asthma Knowledge Questionnaire). Univariate and multivariate log-binomial regressions evaluating the association between several factors and reported nonadherence were performed (prevalence ratios (PR) and 95% confidence intervals (CI)). Results: Through two public hospitals, three private medical clinics, and one private school, 103 caregivers were recruited. Low adherence to the controller treatment of asthma was reported by 48% of the caregivers (MARS-A <45). In the multivariate model, caregivers with the lowest level of knowledge about asthma were almost three times more likely to report low adherence compared to caregivers with the highest level (PR = 2.93; 95% CI: 1.14–7.52). Conclusions: This study highlights the finding that low adherence is widespread in this context and also the importance of targeting caregivers' knowledge of asthma for interventions.     

Caregiver knowledge and its relationship to asthma control among children in Saudi Arabia

Objective: The objective of this study was to examine caregiver responses to individual questions of the asthma knowledge questionnaire and to compare the prevalence of uncontrolled asthma among children according to caregiver responses (correct vs. incorrect). Methods: We conducted an analytical cross-sectional study among 158 children with asthma aged 4–11 who were attending the pediatric primary care clinic of the King Khalid University Hospital in Riyadh, Saudi Arabia. The asthma knowledge questionnaire for use with parents or guardians of children with asthma was used to measure the knowledge of caregivers. Asthma control in the children was measured using an Arabic version of the childhood asthma control test. Pearson’s chi-square or Fisher’s exact tests were used to compare the prevalence of uncontrolled asthma according to the caregivers’ responses. Results: This study showed substantial gaps in knowledge among caregivers of children with asthma. The answer to only one of 17 questions was well known (86.1%); this question involved the harm of smoking near a child with asthma. Answers on 11 of 17 questions were significantly (p?Conclusions: Although innovations are needed to help patients improve their adherence to treatment and to effectively utilize the benefits of contemporary asthma medications, we observe substantial knowledge-related problems in the asthma management of children in Saudi Arabia.     

Exploring youth and caregiver preferences for asthma education video content

Objective: This study examines (1) whether youth and their caregivers have different preferences for asthma education video topics and (2) if education topic preferences vary by youth and caregiver sociodemographic characteristics. Methods: Youth (n?=?83) ages 7–17 years with persistent asthma and their caregivers were recruited at two pediatric practices in North Carolina. Sociodemographic information and youth and caregiver preferences for nine asthma video education topics were collected during in-person interviews. Bonferroni-corrected Chi-square or McNemar tests (α?=?0.0056) were used to compare youth and caregivers differences in topic preferences and topic preferences by youth and caregiver sociodemographic characteristics, including gender, race, ethnicity, and age. Results: Youth were primarily male (52%) and from low-income families (74%; caregiver annual income less than $30 000) and many were Hispanic (45%). Youth and parents expressed the most interest in the following two topics: “how to deal with triggers” (90% and 95%, respectively) and “how to keep asthma under control” (87% and 96%, respectively). Caregivers and children were discordant for two topics: “the difference between a rescue and controller medicine” and “how to [help your child] talk to your [his/her] friends about asthma.” No differences were found between youth and caregiver sociodemographic characteristics and video topic preferences. Conclusions: Youth with persistent asthma and their caregivers differed in their asthma education topic preferences, but preferences did not vary by caregiver or youth sociodemographic characteristics. Studies examining the effectiveness of interventions tailored to differences in educational preferences of youth with asthma and their caregivers are needed.     

Parental coping,depressive symptoms,and children's asthma control and school attendance in low-income,racially, and ethnically diverse urban families

Objective: Low-income urban children of color are at elevated risk for poor asthma control. This cross-sectional study examined associations among parents' coping (primary control, secondary control, and disengagement), parental depressive symptoms, and children's asthma outcomes (asthma control and school attendance) in a predominantly low-income, racially/ethnically diverse sample of families. Methods: Parents (N = 78; 90% female) of children (33% female; 46% Black; 38% Latino) aged 5–17 years (M = 9.5 years) reported on their own coping and depressive symptoms, their child's asthma control, and full and partial days of school missed due to asthma. Results: Parents' secondary control coping (i.e., coping efforts to accommodate/adapt to asthma-related stressors) was negatively correlated, and disengagement coping (i.e. coping efforts to avoid/detach from stressors) was positively correlated, with their depressive symptoms. Secondary control coping was also correlated with fewer partial days of school missed. Primary control coping (i.e., coping efforts to change stressors) was not associated with depressive symptoms or asthma outcomes. Parents' depressive symptoms were also positively correlated with poorer asthma control and partial days of school missed. Regression models showed direct and indirect effects of secondary control and disengagement coping on asthma outcomes via depressive symptoms, after controlling for demographic factors. Conclusions: Parents' secondary control and disengagement coping are related to children's asthma outcomes. Secondary control coping may support parents' mental health and children's asthma control in low-income urban families.     

Contrast of Pediatric Asthma Management Approaches in a Multicultural and Collectivistic Population

Background. Although asthma is the most prevalent chronic illness in childhood and affects approximately 9 million children, the management approaches used by practitioners may not be efficient from the perspective of families. Clinicians often maintain their usual customs of practice, and the context of the clinical encounter is defined in terms of an individual illness management. In collectivistic and multiethnic settings, the extended kin group or extended family shares responsibility for illness management. The goal of this study is to describe health care providers' strategies to manage children with asthma in a multicultural and collectivistic cultural context. Methods. Data were obtained through semistructured in-depth practitioner interviews. Western-trained and traditional practitioners participated. Results. Narrative analysis strategies produced two major themes: 1) fix the asthma and 2) making connections. Practitioners who perceived their responsibility to fix the asthma (make things physiologically normal) often ran into constraints with dealing with the extended family group. Other practitioners who used strategies of making connections often capitalized on the assistance of others to problem-solve the asthma management. Conclusion. In terms of asthma management, the barriers most frequently reported by practitioners were related to the sociocultural and physical environment. There may be vast differences in asthma management approaches for populations from collectivistic cultural orientation.