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.     

Factors associated with adolescent and caregiver reported problems in using asthma medications

Objectives: The purpose of this study was to: (a) describe the types of medication problems/concerns youth with asthma and their caregivers reported and (b) examine the association between sociodemographic characteristics and youth and caregiver reported medication problems/concerns. Methods: English- and Spanish-speaking youth ages 11–17 with persistent asthma were recruited at four pediatric clinics. Youth were interviewed and caregivers completed questionnaires about reported asthma medication concerns/problems. Multiple logistic regression was used to analyze the data. Results: Three hundred and fifty-nine youth were recruited. Eighty percent of youth and 70% of caregivers reported one or more problems in using asthma medications. The most commonly reported problems by youth were: (a) hard to remember when to take the asthma medication (54%) and (b) hard to use asthma medication at school (34%). Younger children were significantly more likely to report difficulty in understanding their asthma medication's directions and difficulty reading the print on the medication's package. Caregivers’ top-reported problem was that it is hard for their child to remember to take their asthma medications (49%). Caregivers without Medicaid were significantly more likely to express difficulty paying for their child's asthma medications. Conclusions: Difficulty remembering to take asthma medication was a significant problem for youth and their caregivers. Providers should work with youth and their caregivers to identify asthma medication problems and discuss strategies to address those problems.     

Barriers to Asthma Management Among Urban Families: Caregiver and Child Perspectives

Objective. Asthma is one of the most common chronic diseases of childhood. Those particularly affected are young, poor, African American children. Moreover, rates of emergency department visits, hospitalizations, and mortality are substantially higher for black children. Despite the ample published research on asthma prevalence and asthma management interventions, there is little research available on barriers to asthma care among urban, low-income families as perceived by children with asthma and their caregivers. Methods. This qualitative study analyzed data from five focus groups conducted with 28 participants in metropolitan Atlanta. Results. This study found caregiver and child health beliefs and perceptions concerning the use of daily controller medications to be a significant barrier to asthma care and proper self-management at home and at school. Barriers to environmental control consisted mostly of financial constraints, which made residential environmental remediation activities difficult to implement. Psychological distress was prevalent among both children and caregivers, which demonstrated the burden associated with managing a chronic illness. Conclusion. Families in urban, low-income communities require asthma management interventions tailored to their specific characteristics, barriers, and challenges. Our findings can be used to inform and enhance asthma management interventions for urban families with children with asthma.     

Child- and Caregiver-Reported Problems and Concerns in Using Asthma Medications

Objectives. The purpose of the study was to (a) describe the types of medication problems/concerns that asthmatic children and their caregivers reported and (b) examine the association between child and caregiver demographic and sociocultural characteristics and reported asthma medication problems/concerns. Methods. Children ages 8 through 16 with mild, moderate, or severe persistent asthma and their caregivers were recruited at five pediatric practices in nonurban areas of North Carolina. Children were interviewed and caregivers completed questionnaires after their child's medical visits about reported problems/concerns in using asthma medications. Multivariate logistic regression was used to analyze the data. Results. Three hundred and twenty children were recruited. Eighty-seven percent of the children reported a problem or concern in using their asthma medications. Approximately 40% of children reported side effects and a similar percent stated that it was hard to understand the directions on their medicines; in addition 60% reported that it was hard to remember when to take their medicines. Females and non-White children were significantly more likely to report they were not sure how to use an inhaler than males and White children. Younger and non-White children were significantly more likely to report it was hard to understand the directions on their medicines than older and White children. Caregivers were most likely to report that their children were bothered a little or a lot by side effects (31%) and a similar percent (29%) were not sure their children were using their inhalers properly. Caregivers without Medicaid were significantly more likely to report difficulty paying for the asthma medications. Conclusions. Medication side effects are a significant problem area for both children and their caregivers, and inhaler skill–based training is particularly needed for non-White children. Health care providers should discuss with children and their caregivers the types of problems/concerns that children may have when using their asthma medications.     

The Relationship between Caregivers’ Post-traumatic Stress Disorder and Their Asthma Health Beliefs in an Ethnic Minority Inner-City Sample

Objective. Caregivers’ asthma health beliefs can impact healthcare decisions. This study aimed to determine whether caregivers with a diagnosis of post-traumatic stress disorder (PTSD) had asthma illness representations less aligned with the professional model of asthma management and whether their children had worse asthma control. Methods. Participants were 120 children with asthma (age M = 9.25 ± 1.37) and their caregivers recruited from the Bronx, NY, USA. Participants were Puerto Rican (n = 55), African-American (n = 30), Afro-Caribbean (n = 22), and Mexican (n = 13). Caregivers completed: a psychiatric interview to determine diagnosis of PTSD, anxiety and depressive disorders; the Asthma Illness Representation Scale (AIRS) to assess beliefs about their children’s asthma; and the childhood asthma control test (C-ACT). Results. One in five caregivers had PTSD, and these caregivers had lower total AIRS scores, lower scores on the AIRS Emotional Aspects of Medication Use subscale, and the AIRS Nature of Symptoms subscale, indicating illness beliefs less aligned with the professional model. Caregivers with PTSD were more likely to perceive asthma as an acute, difficult to control illness and focused on the emotional aspects of medication use. There was no relationship between PTSD in caregivers and self-report of their children’s asthma control, but children with poorly controlled asthma had caregivers with lower total AIRS scores. Conclusion. Caregivers’ traumatic experiences impact their beliefs about their children’s asthma. Future interventions targeting these beliefs could improve the manner in which they understand and treat their children’s asthma.     

Understanding of asthma management: Medicaid parents' perspectives

OBJECTIVE: This article explores parental caregiver perspectives on barriers to asthma care in the Medicaid system. METHODS: Focus groups were held for parents of children with persistent asthma to identify barriers to asthma care for children insured by Medicaid in the Ypsilanti, MI area. Semistructured questions regarding health goals, asthma care, and access were used. Themes were defined as distinct categories or concepts regarding aspects of asthma care and coded. RESULTS: Thirty-six adults participated in four focus groups, 89% were the biological mother, and 64% were African American. Major themes identified included caregiver emotions, caregiver/patient knowledge, environmental issues, school/daycare support, Medicaid health-care system issues, the role of medical providers, and emerging adolescence. Parents demonstrated asthma awareness but were not confident in their role as the child's disease manager. A specific gap was seen in the caregiver's level of self-efficacy to control exposure to asthma triggers, monitor the child's symptoms, and modify medications based on asthma symptoms. CONCLUSION: Medicaid-insured families face unique barriers related to income and insurance limitations as well as issues common to others with asthma. Caregivers demonstrated a high level of asthma knowledge, but like other caregivers gaps between knowledge and behavior existed. Barriers to asthma care that may be specific to Medicaid-insured patients included difficulty maintaining continuity of care due to physician participation in Medicaid programs, and concerns about possible differences in asthma care from health-care providers due to their Medicaid insurance status.     

Adolescent,caregiver, and friend preferences for integrating social support and communication features into an asthma self-management app

Objectives: This study examines: 1) adolescent preferences for using asthma self-management mobile applications (apps) to interact with their friends, caregivers, medical providers, and other adolescents with asthma and 2) how caregivers and friends would use mobile apps to communicate with the adolescent and serve as sources of support for asthma management. Methods: We recruited 20 adolescents aged 12–16 years with persistent asthma, their caregivers (n = 20), and friends (n = 3) from two suburban pediatric practices in North Carolina. We gave participants iPods with two preloaded asthma apps and asked them to use the apps for 1 week. Adolescents and caregivers provided app feedback during a semi-structured interview at a regularly-scheduled clinic appointment and during a telephone interview one week later. Friends completed one telephone interview. Interviews were audio-recorded and transcribed verbatim. An inductive, theory-driven analysis was used to identify themes and preferences. Results: Adolescents preferred to use apps for instrumental support from caregivers, informational support from friends, and belonging and informational support from others with asthma. The majority of adolescents believed apps could enhance communication with their caregivers and medical providers, and the theme of self-reliance emerged in which caregivers and adolescents believed apps could enable adolescents to better self-manage their asthma. Friends preferred to use apps to provide instrumental and informational support. Conclusions: Given preferences expressed in this study, apps may help adolescents obtain social support to better self-manage their asthma. Future app-based interventions should include features enabling adolescents with asthma to communicate and interact with their caregivers, medical providers, and friends.     

An integrated operational definition and conceptual model of asthma self-management in teens

Objectives: A previous definition of adolescent asthma self-management was derived from interviews with clinicians/researchers and published literature; however, it did not incorporate perspectives of teens or parents. Therefore, we conducted in-depth interviews with teens and parents and synthesized present findings with the prior analysis to develop a more encompassing definition and model. Methods: Focal concepts were qualitatively extracted from 14-day self-management voice-diaries (n = 14) and 1-hour interviews (n = 42) with teens and parents (28 individuals) along with concepts found in the previous clinical/research oriented analysis. Conceptual structure and relationships were identified and key findings synthesized to develop a revised definition and model of adolescent asthma self-management. Results: There were two primary self-management constructs: processes of self-management and tasks of self-management. Self-management was defined as the iterative process of assessing, deciding, and responding to specific situations in order to achieve personally important outcomes. Clinically relevant asthma self-management tasks included monitoring asthma, managing active issues through pharmacologic and non-pharmacologic strategies, preventing future issues, and communicating with others as needed. Self-management processes were reciprocally influenced by intrapersonal factors (both cognitive and physical), interpersonal factors (family, social and physical environments), and personally relevant asthma and non-asthma outcomes. Conclusion: This is the first definition of asthma self-management incorporating teen, parent, clinician, and researcher perspectives, which suggests that self-management processes and behaviors are influenced by individually variable personal and interpersonal factors, and are driven by personally important outcomes. Clinicians and researchers should investigate teens' symptom perceptions, medication beliefs, current approaches to symptom management, relevant outcomes, and personal priorities.     

Feasibility of a worksheet for facilitating self-management in children with asthma

Background: Few tools exist to facilitate recommended self-management support for children with asthma. We sought to examine the feasibility, acceptance and preliminary results of a novel worksheet designed to provide such support for children and their caregivers presenting for asthma care. Methods: A 12-topic asthma worksheet was modeled on currently available self-management tools and based on the behavior change theory and motivational interviewing techniques. Children 1–18 years old with asthma and their caregivers were recruited from an allergy clinic and an inpatient ward to pilot test the worksheet by choosing three topics, generating self-management goals for each topic and assessing their self-efficacy for behavior change. Physician documentation of the visit was reviewed for comparison. Telephone follow up of self-management goals occurred 1 week after the visit. Results: Forty-one of 46 eligible subjects agreed to participate (89%). Average completion time was 5:47?min (range 3:30–13:00). Most of them (98%) found the worksheet easy to understand, with minor modifications suggested. Topics most commonly selected were distinct from topics documented by physicians in the subsequent encounter (p?<?0.01). Subjects generated 121 total self-management goals; 93% were at least “moderately confident” they could meet the goals. All 15 subjects reached by phone (37%) had achieved at least one goal at follow-up. Conclusions: A worksheet designed for self-management support of children is brief, feasible and acceptable in the clinical environment. This tool captures unique patient-centered preferences for behavior change, and shows promise for facilitating goal-setting and self-management education in the routine clinical care of pediatric asthma.     

Asthma Self-Management is Sub-Optimal in Urban Hispanic and African American/Black Early Adolescents with Uncontrolled Persistent Asthma

Introduction. Youth as young as 11 are given responsibility to manage their asthma. Yet, little is known regarding early adolescents’ asthma self-management behaviors. This study characterizes urban early adolescents’ asthma self-management behaviors and perceived responsibility to manage asthma, exploring demographic differences and examining the relationship between asthma responsibility and disease management. Methods. About 317 Hispanic and African American/Black early adolescents (mean age = 12.71) with persistent, uncontrolled asthma reported prevention and symptom management steps, and responsibility for asthma care. We used Poisson, cumulative logistic, logistic, and linear mixed-effects regression models to assess the relationships among demographic predictors, prevention and management behaviors, and responsibility for asthma care. Results. Fifty percent took 7–9 prevention steps; few saw physicians when asymptomatic or took daily medication. When symptomatic, 92% used medication to treat symptoms and 56% sought medical attention. Controlling for asthma responsibility, fewer older youth reported observing how they feel when asthma is likely to start, observing symptom changes, or asking for help. More boys reported taking medication daily or upon trigger exposure. Controlling for age, gender, and race/ethnicity, those reporting more asthma responsibility were less likely to report taking management steps, seeking preventive care, asking for help, or going to a doctor/hospital for their asthma. Conclusions. Early adolescents’ asthma self-management is suboptimal. With increasing age, they are less observant regarding their asthma and less likely to seek help. Although they perceive themselves to have greater responsibility for managing their asthma, early adolescents do less to care for their asthma, suggesting they are being given responsibility for asthma care prematurely.     

Enabling and hindering factors influencing adherence to asthma treatment among adolescents: A systematic literature review

Objectives: The aim of this systematic literature review is to study the enabling and hindering factors influencing adherence to asthma treatment among adolescents. Furthermore, it explores the role of caregivers and the healthcare provider in terms of supporting adolescents to manage and live with asthma. Data sources: The literature review was conducted using the MeSH terms asthma, adherence, health literacy, behavior, adolescents, tools, healthcare provider, caregiver, peer influence, self-management, quality of life, morbidity and mortality in PubMed, PsycInfo, MEDLINE and CINAHL. Study selection: The literature search resulted in 652 articles of which 304 were screened based on title and abstracts. Ninety-one of the screened articles were then selected for full-text assessment resulting in 42 articles for in-depth analysis. Results: The literature review identified nine enabling and hindering factors relevant for adherence to asthma treatment among adolescents: behavior, belief, self-management, health literacy, role of health provider, assessment of adherence, role of caregiver, role of peers and the national asthma guidelines. Conclusion: Working with this particular age group is complex and further research in understanding adolescent's behavior, motives, beliefs and perceptions towards adherence to asthma treatment is required to guide them towards better self-management and acceptance of their condition.     

Medication identification in pediatric asthma (MED ID): The reliability and validity of a novel screening tool

Objectives: To evaluate the reliability and validity of medication identification (MED ID), a novel survey assessing caregiver-perceived ability to identify inhaled asthma medications. Methods: We analyzed baseline data from the School-Based Asthma Care for Teens trial in Rochester, NY. Caregivers of adolescents with persistent asthma named the inhaled medications used by their child and identified medications on a pictorial chart. Accurate identification was defined as completed matches between listed names and selected images. Caregivers answered the MED ID survey of four scaled questions on perceived ability to identify inhaled medications. We determined internal consistency reliability using Cronbach's alpha; examined concurrent validity by comparing MED ID sum scores with accurate identification using bivariate and multivariate analyses; and assessed the diagnostic utility of MED ID through receiver operating characteristic analysis. Results: 126 caregivers (76% of enrolled) reported >1 inhaled medication; 52% of caregivers accurately identified medications. Two MED ID questions were removed during analysis. The two remaining questions had a score range of 2–10 points; higher scores indicate greater caregiver-perceived ability to identify medications. The Cronbach's alpha was 0.603. Accurate identification of medications was associated with a higher mean MED ID score (8.6 vs 7.6, p = 0.01). Accuracy was most strongly associated with MED ID scores ≥8 points (88% vs 60%, p < 0.001, Phi 0.32); findings were consistent in regression analysis. The greatest area under the curve was seen with MED ID scores ≥8 points (0.638). Conclusions: The two-item MED ID survey is a reliable and valid way to assess caregiver's ability to identify inhaled asthma medications.     

Asthma medication adherence among urban teens: a qualitative analysis of barriers,facilitators and experiences with school-based care

Objective: Teens with persistent asthma do not always receive daily preventive medications or do not take them as prescribed, despite established clinical guidelines. The purpose of this study was to understand urban teens’ experiences with asthma management, preventive medication adherence and participation in a school-based intervention. Methods: Teens (12–15 years) with persistent asthma, and prescribed preventive medication, participated in a pilot study that included daily observed medication therapy at school and motivational interviewing. Semi-structured interviews occurred at final survey. Qualitative content analysis enabled data coding to identify themes. Results: Themes were classified as “general asthma management” or “program-specific.” For general management, routines were important, while hurrying interfered with taking medications. Forgetfulness was most commonly linked to medication nonadherence. Competing demands related to school preparedness and social priorities were barriers to medication use. Independence with medications was associated with several benefits (e.g. avoiding parental nagging and feeling responsible/mature). Program-specific experiences varied. Half of teens reported positive rapport with their school nurse, while a few felt that their nurse was dismissive. Unexpected benefits and barriers within the school structure included perceptions about leaving the classroom, the distance to the nurse’s office, the necessity of hall passes and morning school routines. Importantly, many teens connected daily medication use with fewer asthma symptoms, incenting continued adherence. Conclusions: Teens with asthma benefit from adherence to preventive medications but encounter numerous barriers to proper use. Interventions to improve adherence must accommodate school demands and unique teen priorities. The school nurse’s role as an ally may support teens’ transition to medication independence.     

Self-management behaviors in World Trade Center rescue and recovery workers with asthma

Background: Asthma is a major source of morbidity among World Trade Center (WTC) rescue and recovery workers. While physical and mental health comorbidities have been associated with poor asthma control, the potential role and determinants of adherence to self-management behaviors (SMB) among WTC rescue and recovery workers is unknown. Objectives: To identify modifiable determinants of adherence to asthma self-management behaviors in WTC rescue and recovery worker that could be potential targets for future interventions. Methods: We enrolled a cohort of 381 WTC rescue and recovery workers with asthma. Sociodemographic data and asthma history were collected during in-person interviews. Based on the framework of the Model of Self-regulation, we measured beliefs about asthma and controller medications. Outcomes included medication adherence, inhaler technique, use of action plans, and trigger avoidance. Results: Medication adherence, adequate inhaler technique, use of action plans, and trigger avoidance were reported by 44%, 78%, 83%, and 47% of participants, respectively. Adjusted analyses showed that WTC rescue and recovery workers who believe that they had asthma all the time (odds ratio [OR]: 2.37; 95% confidence interval [CI]: 1.38–4.08), that WTC-related asthma is more severe (OR: 1.73; 95% CI: 1.02–2.93), that medications are important (OR: 12.76; 95% CI: 5.51–29.53), and that present health depends on medications (OR: 2.39; 95% CI: 1.39–4.13) were more likely to be adherent to their asthma medications. Illness beliefs were also associated with higher adherence to other SMB. Conclusions: Low adherence to SMB likely contributes to uncontrolled asthma in WTC rescue and recovery workers. Specific modifiable beliefs about asthma chronicity, the importance of controller medications, and the severity of WTC-related asthma are independent predictors of SMB in this population. Cognitive behavioral interventions targeting these beliefs may improve asthma self-management and outcomes in WTC rescue and recovery workers.

Key message: This study identified modifiable beliefs associated with low adherence to self-management behaviors among World Trade Center rescue and recovery rescue and recovery workers with asthma which could be the target for future interventions.

Capsule summary: Improving World Trade Center-related asthma outcomes will require multifactorial approaches such as supporting adherence to controller medications and other self-management behaviors. This study identified several modifiable beliefs that may be the target of future efforts to support self-management in this patient population.     

Child and Caregiver Involvement and Shared Decision-Making during Asthma Pediatric Visits

Objective. The purpose of this study was to examine () the extent to which caregivers and children asked asthma management questions during pediatric asthma visits; () the extent to which providers engaged in shared decision-making with these caregivers and children; and () the factors associated with question asking and shared decision-making. Methods. Children aged 8–16 years with mild persistent asthma, moderate persistent asthma, or severe persistent asthma and their caregivers were recruited at five pediatric practices in non-urban areas of North Carolina. All of the medical visits were audio tape recorded. Generalized estimating equations were used to analyze the data. Results. Only 13% of children and 33% of caregivers asked one or more questions about asthma management. Caregivers were more likely to ask questions about their child’s medications. Providers obtained child input into their asthma management plan during only 6% of encounters and caregiver input into their child’s asthma management plan during 10% of visits. Conclusion. Given the importance of involving patients during healthcare visits, providers need to consider asking for and including child and caregiver inputs into asthma management plans so that shared decision-making can occur more frequently.     

The relationship between caregivers' subjective social status and asthma symptoms and management for urban children

Objective: Subjective social status (SSS) is a person's perception of his/her social standing among others. We explored the relationship between caregivers' SSS and asthma symptoms, visits, and medication use among children with persistent asthma. Methods: We analyzed baseline data of children (3–10 years) from the SB-TEAM trial in Rochester, NY. Using a modified MacArthur Scale of SSS, caregivers rated themselves “a lot worse off” to “a lot better off” compared to 4 groups (e.g., neighbors). “Low SSS” was defined by a response of “a lot worse off” or “somewhat worse off” for any of the referent groups. Caregivers reported their child's asthma symptoms, healthcare visits for asthma, and medication use. Bivariate and multivariate statistics were used. Results: We found that, of the 230 children enrolled (participation rate:78%, 62% Black, 72% Medicaid), 29% of caregivers had low SSS. Caregivers with low SSS had more depressive symptoms (46% vs. 28%) and lower social support (69.1 vs. 77.7). In multivariable analyses, children of caregivers with low SSS had fewer symptom-free days/2 weeks (5.8 vs. 7.9, p = .01). While they were more likely to have a routine asthma visit in the past year (35% vs. 23%, adjusted p = .03), there was no difference in their use of preventive medication. Conclusions: Many caregivers of children with persistent asthma report low SSS. While children of these caregivers had fewer symptom-free days, they were not more likely to use preventive medications. Efforts are needed to support these caregivers to ensure optimal preventive care and reduce morbidity.