Original Research Report

Asthma Management Disparities: A Photovoice Investigation With African American Youth

The Journal of School Nursing 2016, Vol. 32(2) 99-111 ª The Author(s) 2015 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1059840515588192 jsn.sagepub.com

Robin Evans-Agnew, PhD, RN1

Abstract Disparities in asthma management are a burden on African American youth. The objective of this study is to describe and compare the discourses of asthma management disparities (AMDs) in African American adolescents in Seattle to existing youth-related asthma policies in Washington State. Adolescents participated in a three-session photovoice project and presented their phototexts to the Washington State asthma planning committee. Critical discourse analysis methodology was used to analyze adolescent phototexts and the State asthma plan. We found that the State plan did not address AMD in African American adolescents. Adolescents discussed more topics on AMD than the State plan presented, and they introduced new topics concerning residential mobility, poor nutrition, inadequate athletic opportunities, and schools with stairs. Current health policy may be constraining effective responses to asthma disparities in youth. School nursing leadership can use photovoice to advance youth voice in transforming structural inequities in urban school environments. Keywords asthma, disparities, discourse, school nursing, health policy, photovoice

Asthma management disparities (AMDs) between African American and White youth are a significant threat to school health in the United States. AMD can be defined as the systematically unfair allocation of resources and activities relating to asthma management between groups of people who are more or less advantaged socially (Braveman, 2006). One in seven African American youth have asthma (15%) compared to 1 in 13 White youth (7.5%). In a recent trend analysis, Akinbami, Moorman, Simon, and Schoendorf (2014) found that between 2001 and 2010 the asthma prevalence in African American youth (0–17 years) had increased from 1.4 to 2.0 times the prevalence for White youth. African American youth have more exacerbations than White youth, resulting in more school absences related to emergency room visits and hospitalizations and an increased risk of mortality (Gupta, Carrio´n-Carire, & Weiss, 2006). School policies and school nursing can have a significant influence on both the development of adolescents and the management of their asthma. School nurses manage asthma in youth using nationally and federally recommended activities that encourage monitoring of symptoms and medications, communicating with health care providers, and reducing environmental triggers (Centers for Disease Control and Prevention [CDC], 2002, 2006; Reddel et al., 2009; Yow, Rochkes, Baszler, Dolatowski, & King, 2013). These strategies/activities include (1) management and support systems, (2) health and mental health services, (3)

asthma education, (4) healthy school environments, (5) physical education and activity, and (6) school and family efforts. School nurses have also participated in regional public health planning efforts targeting asthma. However, the universal application of such activities may not be sufficient to reduce AMD. A wide range of behavioral, social, and structural determinants influence the allocation of resources and activities in the schools. Determinants of AMD vary across individual, health care, community, and sociocultural ecological systems (Canino, McQuaid, & Rand, 2009a; Evans-Agnew, 2011; N. Krieger, 2011). Adolescence marks an important developmental stage marked by identity formation and independence (National Research Council, 2009). For youth with asthma, this stage is even more important as attitudes and practices developed in adolescence will persist into adulthood. For African American adolescents, such attitudes and practices are influenced not only by individual management behaviors, health care practices, and community environments but also by

1

Nursing and Healthcare Leadership, University of Washington Tacoma, Tacoma, WA, USA Corresponding Author: Robin Evans-Agnew, PhD, RN, Nursing and Healthcare Leadership, University of Washington Tacoma, Tacoma, WA 98402, USA. Email: [email protected]

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their understandings of their sociopolitical identity. It is during adolescence that individuals may become aware of the structural influences on disparities in management between themselves and other more privileged groups (Watts & Guessous, 2006; Williams, Sternthal, & Wright, 2009). The way adolescents with asthma discuss and write about their identities managing asthma within these structural constraints can be thought of as their ‘‘discourses’’ on AMD. An examination of these discussion/discourses within the context of existing asthma management policies in the school environment could reveal important opportunities and challenges for school nurses and others working to reducing disparities. The objective of this study was to describe and compare the discourses of AMD in African American adolescents in Seattle to existing youth-related asthma policies in Washington State.

Literature Review Adolescents with asthma negotiate multiple challenges in managing their asthma, as they achieve greater independence. These challenges include self-monitoring for symptoms, maintaining daily medication protocols, engaging with the health care system, and taking actions to avoid and reduce environmental triggers (Kieckhefer & Trahms, 2000). For African American youth, these challenges are more likely than with White youth to be underscored by disadvantages conferred through the contexts of poverty, discrimination, and geography (Williams et al., 2009). Discussions and program interventions in school nursing surrounding asthma management have mostly focused on individual practices, with little attention to the environmental and systemic influential factors impacting management. For example, many studies have reported on programs that increase self-management skills, medication adherence, and immunizations (Ahmad & Grimes, 2011; Srof, Taboas, & Velsor-Friedrich, 2012). Individual asthma management behaviors are also influenced by home environmental threats, caregiver support, stress, and health literacy (Canino, McQuaid, & Rand, 2009b). Significant progress has been made over the last decade in addressing these determinants and reducing disparities through home visiting programs (Horner & Brown, 2014; J. Krieger, 2009). There is little insight into how such programs can be integrated with school health services for adolescents and especially for African American adolescents. Other studies have examined the ways adolescents negotiate their identities in relation to managing asthma (Rhee, Wenzel, & Steeves, 2007; Velsor-Friedrich, Vlasses, Moberley, & Coover, 2004). None of these studies have so far exclusively focused on the sole perspectives of African American youth. In a Philadelphia focus group study of 40 teens including 30 African American youth, Naimi and others (2009) examined adherence behaviors and attitudes. They found that adherence behavior was not related to the

frequency of exacerbations and that the teens in their study referred to their ‘‘complicated lives . . . [including] nights away from home’’ (p. 1339) as a barrier to medication adherence. Disparities in youth asthma management are also influenced by determinants in the health care system in schools and the community including access, quality of care, communication, cultural competency, and bias (Gupta, Springston, & Weiss, 2009; J. Krieger, 2008). School nurse case management of children with asthma has been shown to decrease absences, and yet this has not been studied in particular with high-risk youth or in relation to asthma disparities (Engelke, Swanson, & Guttu, 2014; Moricca et al., 2013). Asthma care quality is influenced by provider bias and cultural competency (Galbraith et al., 2010; Lieu et al., 2004). Asthma management plans have long been suggested as a way to improve health care communication of asthma self-management between providers, school nurses, and individuals and families but their uptake has been persistently low throughout the last decade, and it is not clear what effect such plans have on AMD (McDaniel & Waldfogel, 2012). In addition to health promotion interventions at individual, family, and health care system levels, interventions targeting community system determinants are encouraged by national and governmental organizations. Inadequate housing, neighborhood disadvantage, crowding, social isolation, social capital, and community violence have been identified as being particularly influential in maintaining AMD (Wright & Subramanian, 2007). The National Association of School Nurses’ joint statement on improving asthma management in schools included recommendations concerning indoor and outdoor air quality in school buildings (Yow et al., 2013). Such recommendations do not provide explicit guidance, however, for the reduction of disparities in asthma management or address other community determinants. Structural forms of discrimination within society may also be influencing the allocation of resources and activities for asthma management (Williams et al., 2009). Daily experiences of discrimination, for example, have been found by some researchers to affect caregiver’s management of asthma (Coutinho, McQuaid, & Koinis-Mitchell, 2013). Institutional forms of housing discrimination persist in cities in the United States. Many African American families have little choice but to live in disadvantaged neighborhoods, in close proximity to sites for polluting industries, truck routes, ozone producing highways, and increased risks of workplace exposure to asthma triggers (Pastor, Morello-Frosch, & Sadd, 2006; Williams et al., 2009). Schools may provide an opportunity for mitigating such circumstances and empowering youth to act to transform AMD in their community (Chambers, 2007; Hipolito-Delgado & Zion, 2015), but as yet there is little guidance for how school nurses may contribute to or advocate for such opportunities with their populations.

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Given the complexity of the underlying factors leading to AMD, researchers increasingly call for multilevel ecological approaches that include attention not only to individual but also to health care, community, and sociocultural system factors. Such approaches should consider both strategies that address more than one ecological system (N. Krieger, 2008; Wright & Subramanian, 2007), and the inclusion of the voice of marginalized groups in the development of such policies (Bell & Standish, 2005; Rogers & Kelly, 2011). The purpose of this study was to describe and compare the discourses of AMD in African American adolescents in Seattle to existing youth-related asthma policies in Washington State.

Theoretical and Methodological Framework This qualitative study utilized critical discourse analysis methodology within an ecological framework. An ecological framework encompassing individual and family, health care, community, and sociocultural levels was used to identify adolescent discourses of AMD pertaining to different ecological levels. As discussed in the Literature Review, researchers have described important determinants of AMD in each of these ecological levels. Critical discourse analysis methodology utilizes contextual and linguistic approaches to identify discourses, the patterned and linked systems of text and talk of adolescents in the study, and the text of the State asthma plan (Fairclough, 2009; van-Dijk, 2009; Wodak & Meyer, 2009). The contextual data included a detailed description of the setting and participants. The linguistic data were comprised of recorded and transcribed verbatim texts of teen focus group discussions, their photographs and writing, and the text of a State asthma plan. A critical theoretical orientation toward such texts and contexts provided the researcher with opportunities to evaluate the impact of context and power in the way both adolescents and policy makers talked about disparities. A critical theoretical orientation also acknowledges the researchers’ role in the co-creation of data and thus requires reflexivity, critical distance, and situating the data in the context of where it was collected (Wodak & Meyer, 2009).

Method This qualitative study was approved by the institutional review boards of the University of Washington and the Seattle Public Schools. Twenty adolescents (11 females and 9 males) from high schools in Central and Southeast Seattle neighborhoods in King County, Washington State, were recruited. These two neighborhoods experienced the highest youth hospitalization rates for asthma at 419.9 and 493.1, respectively, compared to 192.6 for King county and to the least diverse area of Mercer island at 93.5 per 100,000 and were also the areas with the largest proportion of African

Americans in the city (J. Krieger & Song, 2006). Inclusion criteria included (1) high school attendance, (2) current asthma (either an attack in the last year or 2 days of increased albuterol), and (3) self-identification as African American. School nurses and community organizations assisted in recruitment. Data sources included transcripts and phototexts from the adolescents and the text of the State plan (Washington Asthma Initiative, 2011).

Photovoice With Adolescents Photovoice is a participatory research method that engages participants in photography; group discussion; and dissemination of selected photographs, titles, and captions, referred to as phototexts (Carlson, Engebretson, & Chamberlain, 2006). Originally developed by Wang, Burris, and Ping working with villagers in rural China (1996), this method has three participatory outcomes: understanding community needs and assets, empowerment, and policy change (Catalani & Minkler, 2010). An important aspect of photovoice is the use of a ‘‘SHOWeD’’ questioning strategy for discussing the photos intended to elicit a critical consciousness among participants (Table 1). Photovoice has been shown to be well suited toward engaging adolescents in research and understanding adolescent voice (Wang & Pies, 2004). Photovoice has been used elsewhere to investigate barriers and facilitators for asthma management (Gupta et al., 2013; Jones, Ingham, Cram, Dean, & Davies, 2013) but has not been used to discuss disparities with youth. In this study, we conducted focus groups with African American adolescents (two groups of men and two groups of women). Each focus group met for three sessions over 1 month for about 1.5 hr at either community center or school locations. At each session, food, transportation, and facilitation by an African American adult (experienced with youth) of the same gender as the participants were provided. In the first session, participants discussed their experience with asthma management, watched a short slide show to provide examples of how they could use their cameras to take photographs of asthma, and received digital cameras and training on how to operate them. Sticker prompts were placed on the cameras to help them think about what sort of photographs to take such as ‘‘How can I show through photographs what my life with asthma is like’’ or ‘‘What may make it harder for me to manage asthma compared to others?’’ In the second focus group session, photos were loaded onto a laptop and displayed using a projector. In these discussions, participants were encouraged to title their own photos and as a group answer the SHOWeD questions (Table 1). Participants were also encouraged to continue to take photographs in preparation for the final session where they would select up to three photos for display at a meeting of policy makers gathering to release the final draft of a new statewide plan for asthma. Each participant then created phototexts from their selected photos by either writing or orally recording

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Table 1. SHOWeD Questioning Strategy for Asthma Photovoice. 1. What is a potential title for this picture? 2. What do you See here? How does this relate to my asthma? 3. What is really Happening here? 4. How does this relate to Our lives with asthma? 5. Why does this asthma situation, concern, or strength exist? 6. What should be Done about this, for me and other teens with asthma?

photovoice photo-showing event where community members and policy makers commented on the photovoice project. The techniques of distancing and self-reflection allowed for an examination of the research design by employing selfreflection from recruitment through analysis and by using additional researchers as critical observers during data collection.

Results their accompanying texts. Adolescents received US$20 for attending each of the three focus group sessions and for displaying their phototexts at the event with policy makers (US$80 total). The adolescent data were comprised of both the phototexts and the transcriptions from the focus groups. State asthma plan. A collaborative team of public health stakeholders, including school nursing leadership, had spent several months devising a plan for addressing asthma across Washington State. The Washington State asthma plan included sections on (1) health care, (2) community environment, and (3) schools and early learning. This plan was in draft form and being prepared for final release when policy makers agreed to include the photovoice project presentation at their final meeting.

Analysis The photovoice focus group interviews with the adolescents together with the phototexts yielded a 50,000 word transcript. The transcript was uploaded into a single hermeneutic unit within ATLAS.ti qualitative analysis software (Muhr, 2009). After an initial read through, words or phrases relating to AMD were coded by ecological level to a known set of 36 determinant topics of AMD described nationally (Evans-Agnew, 2011). The identities of persons, their actions, and the events constituting these discussions/discourses were then identified. In the final read through, arguments and justifications for the existence of AMD in transcripts and phototexts were identified. The Washington State asthma plan text was also uploaded into ATLAS.ti and analyzed in a similar way: Words or phrases that described responses to AMD (hospitalizations and exacerbations) and the persons burdened by AMD were coded into topics and arranged by ecological level.

Rigor Methodological rigor was maintained through the craftsmanship, communicative, and pragmatic approaches to validity described by Kvale (1995), and analytical rigor was maintained through the techniques of distancing and continuous self-reflection. Craftmanship was achieved through methodology–method fit, and because this study was concerned with social justice and the voice of adolescents, critical theory and photovoice made an appropriate fit. Communicative and pragmatic validity were achieved through the

Of the 20 adolescents who participated in the study, the average age in years of the women (n ¼ 11) was 16.7 and of the men (n ¼ 9) was 16.3 (Table 2). Most participants (n ¼ 17) answered a dialogic question pertaining to which of the demographic questions they had just answered mattered the most to them for managing their asthma. None of these participants selected their age, but instead either selected their parent/guardian’s work situation (n ¼ 4), the amount of persons that they lived with (n ¼ 5), their zip codes (n ¼ 4), or the years they had resided at that address (n ¼ 4; Table 2).

Descriptions of Persons With AMDs The State plan and the phototexts displayed by the adolescents promoted various descriptions of the identities of persons burdened by AMD in differing ecological systems (Table 3). In the sociocultural system, the State plan identified persons burdened by disparities to be women, of low incomes, and American Indian and Alaska Native race but not African American adolescents. Adolescent phototexts discussed being both American and African American. Both the State plan and the adolescent phototexts described persons who live close to polluting sources such as ‘‘proximity to roadways’’ (State plan) and those who ‘‘have to walk past [polluting sources] buses/trash’’ (adolescent phototexts, n ¼ 3). In addition, adolescent phototexts portrayed sociocultural factors of future employment aspirations (retiring in the military) and social position (n ¼ 2). In discussing social position, one teen took a photo of a vending machine and describe how this represented people with asthma, ‘‘you would be higher in the vending machine you would be higher than people who have a low sense of self-esteem,’’ and another discussed ‘‘Falling Behind’’ (Figure 1). In it two teens appear to be running across a field, the teen in front is looking back at the other behind them. The text discusses how ‘‘People that aren’t even dealing with asthma, rarely tend to pay attention to the last person.’’ In relation to other ecological systems, the State plan described persons with AMD in community and health care but not individual systems, whereas the adolescent phototexts described persons with AMD across all three systems (Table 3). Both the State plan and the adolescents described persons living in ‘‘underserved communities’’ (State plan, n ¼ 2) or regions known for being underserved such as ‘‘down here in the South end.’’ Also both the plan and the adolescents described ‘‘poor quality in housing’’ or

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Table 2. Participant Demographics.

Category No response Age

Parent/ guardian work situation

Persons you live with

Value 15 Years 16 Years 17 Years 18 Years Total Unemployed

Part time Full time More than one job Total 1 Person

2–3 Persons 4–5 Persons 5þ Persons Total Zip code 98103 98106 98108 98118 98122 98144 98178 Total Length of time Less than one year living at your address 1–2 Years 2þ Years Total

# Responses 6 3 5 6

Most Important Category/Value for Managing Your Asthma?

0 (2F, 4M) (2F, 1M) (4F, 1M) (3F, 3M) 20 7

3

3 9 1

1 3

20 2

4

8 5 5 20 1 1 1 6 4 1 6 20 2

2 2 1 5

7 11 20

2 1 4

1 1 1 1 4 1

Note. F ¼ female; M ¼ male.

substandard ‘‘living conditions.’’ In relation to the health care system, the State plan referred to those who experienced ‘‘breaks in insurance . . . [and were] unable to pay for asthma,’’ as being burdened by disparities. One adolescent described herself in relation to the health care system, she complained about the inability of health care providers to be able to really explain how to manage her asthma. Providers instead were quick to provide her with ‘‘all sorts of medicines and info,’’ but none were actually able to ‘‘don the cape [of being a superhero in order to] explain it to me.’’ Adolescents used their phototexts to also discuss individual factors in terms of their physical and emotional health (n ¼ 13) and their families (n ¼ 4). For example, teens discussed their feelings of ‘‘loneliness’’ or isolation from anyone knowing that they had asthma, or they discussed how

asthma affected or didn’t affect their ability to ‘‘be physical.’’ The State plan did not discuss persons managing asthma at the individual or family level. Adolescents or children or youth were not mentioned in the State asthma plan in reference to asthma management issues or disparities.

Determinants of AMD in Adolescent Texts and the State Plan Determinants of AMD were identified in the State asthma plan text and from the transcripts and phototexts of the adolescents. These determinants were organized into topics by ecological system (Table 4). Overall, the State plan text included 13 topics and the adolescents discussed 32. None of the topics in the State plan concerning the AMD in the sociocultural system directly matched those discussed by the adolescents. In the photovoice discussions and phototexts, adolescents discussed five topics including the density of polluting facilities in central and South end neighborhoods, experiences of discrimination (n ¼ 45), the risks of being exposed to asthma triggers in the workplace, and socioeconomic position or class (n ¼ 11; Table 4). Adolescents discussed the effects of discrimination on their asthma management in terms of structural differences in access to medication ( . . . people often think, like, oh yeah they are Black, they can’t afford the good inhalers, like some White people can) and safe neighborhoods (I just feel that they [the city] don’t pay attention to the African American . . . neighborhoods). Adolescents also talked about being treated differently in school ( . . . [my] Caucasian friend [with asthma] . . . Randy . . . when he be in the hallway . . . it be all cool . . . but when [I have got to] be outta class . . . they don’t really care if we have asthma, I think its just about race) or that they perceived others as, ‘‘dumbing down African Americans, assuming they can’t comprehend the asthma situation.’’ Community system topics were identified in both the State asthma plan (n ¼ 8) and the adolescent photovoice focus group transcripts and phototexts (n ¼ 92). The State asthma plan texts discussed the importance of housing quality, neighborhood disadvantage, and outdoor air pollution. Adolescents introduced two new topics of residential mobility or ‘‘we had to move’’ (n ¼ 5) and school-related exposures (n ¼ 24). These new topics are described in more detail in the next section. The State asthma plan (n ¼ 7) and adolescent participant texts (n ¼ 33) included topics concerning health care system determinants of AMD. Both the State plan and the adolescents discussed access, health care communication, quality of care, and process of care barriers. In particular, teens discussed how school nurses sometimes would not believe their reports of symptoms. Adolescents also discussed health care bias and cultural competence. Individual system topics in terms of self-management and indoor air quality were

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Table 3. Descriptions of Persons With Asthma Management Disparity (AMD) in the Washington State Plan and Phototexts. Ecological system Sociocultural

Community

Health care

State Asthma Plan

Persons ‘‘American Indian and Alaska Native adults’’ versus White adults ‘‘African Americans’’ versus ‘‘People (not only White) but all races’’ ‘‘Low-income’’ versus ‘‘higher income’’ ‘‘[people who have to live in close] . . . proximity to roadways’’ Women versus men ‘‘Retiring in the Military’’ ‘‘Americans’’ Social position, ‘‘ . . . people with asthma falling behind’’ Total texts describing persons for this system [State plan: ‘‘Underserved Communities’’], [adolescents: ‘‘the South end’’] ‘‘[residents who live] in public, rental, multi-unit housing’’ ‘‘My community’’ ‘‘My school’’ Total texts describing persons for this system ‘‘many . . . provide [me with] . . . medicines and information’’ ‘‘[Those with] Breaks in insurance . . . unable to pay for asthma medications and care’’ Total texts describing persons for this system

Individual/family Emotional/physical/health ‘‘My family’’ Total texts describing persons for this system Total Texts

Adolescent Phototexts

2 1 5 1 2

3 1 1 2 8

10 2 4

1 3 1 4 9 1

6 1 1

1

0 17

13 4 17 35

New Topics Concerning AMDs Described by Adolescents Adolescent participants introduced two new topics that had not been previously discussed in the literature concerning AMD from the community system. These topics concerned the effects of residential mobility, or ‘‘ . . . we had to move’’ (n ¼ 5) and the unequal effects of school exposures (n ¼ 24). Teens described having to move because of the rising costs of housing and gentrification. Teens discussed how their schools were a factor in perpetuating AMD because of inadequate nutrition choices, access to athletic opportunities, and the barrier that the large amount of stairs in urban schools presented to youth with asthma. These topics are described below. Figure 1. Falling behind. ‘‘I took this picture to represent the people with asthma falling behind and not particularly running, just in any physical activities. I feel as if I’m always behind in all of those activities. People don’t really know that trying to finish is a difficult task. People – that aren’t even dealing with asthma – rarely tend to pay attention to the last person. I feel that if more people knew or even understood it would make things easier, instead of just having sympathy: really understanding what I deal with.’’

discussed in both the State asthma plan texts and the adolescents. Adolescents discussed an additional seven topics within this system including adherence, depression, family dysfunction, illness and respiratory infections, nutrition and obesity, social support, and stress.

Residential mobility: ‘‘ . . . we had to move’’. Adolescents introduced the topic of having to move to new housing (n ¼ 5). One explained the economic context behind their family’s move: ‘‘The reason why we had to move was the people that were owning said that we couldn’t pay the rent anymore, and they wanted somebody else in there that could.’’ The other described the effect this move had on their asthma management, ‘‘The first time I move to my neighborhood, it’s a new environment, so I don’t know anybody my own, yeah, so, my asthma started acting up.’’ One teen discussed the oppressive feelings she had when ‘‘White men dressed in suits’’ would come to her door asking to purchase their family home because of its location. Other teens described

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Table 4. Comparison of State Asthma Plan and Adolescent Focus Group Transcripts and Phototexts. Determinant of Asthma Management Disparity Sociocultural system determinants Density of polluting facilities Discrimination Employment/exposures Poverty Racial identity Segregation Socioeconomic position Total texts for this system Community system determinants Community stress Crowding Inadequate housing We had to movea Neighborhood disadvantage Outdoor air pollution School exposuresa Social capital Social isolation Violence/crime Total texts Health care system determinants Access Bias Communication Cultural competence Health care financing Process of care barriers Quality of care Total texts Individual and family determinants Adherence Beliefs/culture Depression Family dysfunction Genetics Health literacy Illness/respiratory infections Indoor air quality Nutrition/obesity Self-management skills Social support Stress Total texts Grand total

State Asthma Plan

Adolescent Focus Group and Phototexts

Total Texts

1

1 45 1

2

1 4 11 63

2 45 1 0 3 4 16 71 0 1 2 12 5 15 24 24 5 13 5 106 0 5 5 16 2 2 4 7 41 0 1 0 2 3 0 0 6 30 1 31 6 14 94 312

5 8

1 2 7 5 13 23 24 5 13 5 98

5 2 1

8 2

3 5 15 2 1 2 5 33

1 1 2 2 8

1 2 3

6 27 1 30 6 14 90 284

3 1

4 28

a

Newly introduced.

moving to ‘‘the White side’’ of a suburban community located further south away from urban centers or had a ‘‘remembrance’’ of when their asthma was well controlled before they moved to the city. School exposures. Adolescents discussed unequal access to healthy foods in or near their schools. Teens were concerned about how being ‘‘out of shape’’ would affect their asthma and that ‘‘food is a trigger for my asthma.’’ In one of the

female focus groups, teens reacted to photos taken of a school lunch tray consisting of a pizza, a roll, and a small carton of milk, and they decided to entitle it ‘‘Is this all I get?’’ In two other photos, teens complained about dominance of off-campus convenience stores and a friedchicken establishment, comparing their lack of choice to other wealthier communities, ‘‘depending upon where you live, there’s not really access to . . . [choices for healthy food] . . . if you live in the South end or something . . . ’’

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Figure 2. Cookieland. ‘‘Cookieland is a land full of cookies. As you can see in this section of the store there are many different types of cookies. I know that we Americans love junkfood and that is why we are all unhealthy. I am not saying – that cookies trigger my asthma, I am saying – that ALL junkfood does this.’’

Others criticized obesity programs in their school as another way students with asthma are unfairly ignored. ‘‘ . . . there’s no way that they can possibly accommodate all of the students they have . . . with asthma, and so they decide . . . it’s more cost effective to talk about food.’’ One teen chose to create a phototext taken inside a grocery chain that targets low-income populations (Figure 2). In this phototext, entitled ‘‘Cookieland,’’ the photo depicts a close-up of store-shelves stacked with packaged cookies. She describes how all ‘‘Americans love junk food’’ and that by showing this photo she was not just saying that only ‘‘cookies’’ may trigger asthma but that ‘‘all junk food does this.’’ Adolescents discussed access to quality athletics as an important issue for asthma management (n ¼ 6). Athletics helped ‘‘keeping it [asthma] under control’’ and ‘‘being physical’’ was important, but that asthma management was ‘‘holding me back’’ from fully engaging in athletics. One teen argued that his coach was more likely to limit his participation compared to others because of his asthma. Two teens discussed the inadequacies of their school’s athletic facilities compared to schools in wealthier areas. In another phototext entitled ‘‘Football Helmet’’ (Figure 3), a teen connects athletics to breathing and how his school doesn’t ‘‘ . . . have that much school spirit because our sports teams aren’t the greatest compared to other schools.’’ Both male and female focus groups shared and discussed photos of stairs (n ¼ 11) and four included stairs in their phototexts. Three teens described how stairs were important for physical activity as ‘‘ . . . a form of exercise and help prevent your asthma from flaring up . . . ’’ Other teens argued that negotiating the stairs in-between classes was an unfair burden for them. They talked about ‘‘breathing hard,’’ when they would get to classes, and how this was ‘‘a hassle,’’

Figure 3. Football helmet. ‘‘The helmet represents football, which ties to sports, which ties to exercise, and all those things. Exercise ties together with breathing and asthma. That’s something that affects kids when they get exercise they get asthma. At our school we don’t have that much school spirit because our sports teams aren’t the greatest compared to other schools.’’

Figure 4. Walking all day on the steps. ‘‘It’s not a problem for me, but for most people I see: People get winded off of it. It is good exercise. We have more stairs down here in the South End; more stairs, more floors.’’

because ‘‘you get worn out,’’ and it would take them longer to be able to concentrate on the subject matter being taught. In one group, teens described how climbing the steps would make them late for class. Because of this difficulty, one teen stated ‘‘I hate the steps . . . they affect me on a daily basis.’’ In the same group, others pointed out how the burden of being late was compounded because often they would then be ‘‘sent back down the stairs’’ in order to get a late pass or would be ‘‘ . . . assigned to Saturday school.’’ Some teens compared the number of stairs in schools in the South end of Seattle to the North end: ‘‘North end

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schools usually have, like, long hallways. We have, like, stairs. Up there [in the North end] all you see is this long, wide hallways.’’ One teen used a phototext (Figure 4) entitled ‘‘Walking all day on the steps’’ to discuss unequal exposures to stairs for teens with asthma between schools in the South end of Seattle compared to the North end. The phototext showed a set of school steps rising to the right and discusses that while it was not a ‘‘burden for him,’’ others would get ‘‘winded’’ from climbing the steps and that ‘‘ . . . we have more stairs down here in the South end: more stairs, more floors.’’

Discussion A comparison of discussions and phototexts on AMD among participating youth with the text of the State asthma plan reveals important differences and similarities. While youth were able to talk about AMD in relation to their experiences of being African American, of discrimination, and of their social position, the State plan instead promoted more general topics concerning AMD such as exposures to pollution, neighborhoods, and housing. This investigation of African American youth voice suggests policy makers may be out of step with the wide variety of ecological discussions on disparities that youth with asthma are engaged in. Indeed, these findings show that adolescents in schools are finding unique ways to redirect dominant discussions of AMD. Youth in this study talked about asthma disparities in terms of the sociopolitical factors affecting them as youth living in locations subject to urban mobility and attending schools where they perceived injustices occurring in terms of school nutrition, athletics, and stairs. The fact that the State plan did not place significance on AMD with African American youth was surprising and gives pause for consideration of the reasons why such disparities may be masked from State policy makers. Current policy guidance for asthma planning programs and schools do not address sociocultural system disparities such as discrimination or social position (CDC, 2002; Yow et al., 2013). This is important because while the policy makers in this study recognized some sociocultural factors of AMD, they advanced no solutions for their mitigation. Conversely, adolescents discussed a variety of sociocultural system factors related to AMD, including the greatest number of texts (n ¼ 45) for discussions on discrimination. In terms of discrimination, adolescents were able to discuss their perceptions of bias in health care relating to getting the right education or medications. Adolescents also described how Black and White youth with asthma were treated differentially by school personnel with respect to hall passes, or even in their ability to understand asthma. Policy makers avoided such discussions despite considerable national discussions on the topic for both health care (Smedley, Stith, & Nelson, 2003) and school-based education (Knaus & Rogers-Ard, 2012). While national asthma disparity researchers call for

health leaders to be familiar in multilevel approaches, it appears that local policy making minimizes such approaches especially in mitigating the structural sources of discrimination experienced by these adolescents.

Policy Maker Identity Topics of AMDs It is surprising that the State plan does not contain identity topics for youth or African Americans in its targets for asthma planning. This might be due to the lack of statewide morbidity data for African American adolescents with asthma. Race data are not yet collected at the point of hospitalization in Washington State and is only available as prevalence data (Washington State Department of Health, 2008). Given the publication of a recent report by the CDC on racial disparities in asthma, this should be a local policy priority (Akinbami, Moorman, & Liu, 2011). Because race and racial identity are a socially contested construct, there is a need for transparency in state data collection protocols with respect to this determinant. There may be several other reasons why the policy makers drafting the State plan appear to be out of touch with the youth constituents who could benefit from this policy. While two school nurses participated in the planning committee, neither worked in schools with predominantly African American populations. More importantly, African American adolescents were not asked for input at the beginning of the planning process but only at the conclusion. The State plan discusses school-level data extensively in terms of asthma prevalence but not in terms of management disparities, which was the focus of this analysis (Washington Asthma Initiative, 2011). This might be related to the lack of asthma management data by race at the school level (Washington State Department of Health, 2008). These inadequacies in planning approaches to AMD further compound the difficulties for nurses working in schools by leaving them with little guidance on how to act at a district or local level to mitigate or transform disparities. Policy makers also minimized the importance of identities in relation to advantaged groups, identifying each of ‘‘males,’’ ‘‘White adults,’’ and ‘‘high income’’ only once. Advantaged adolescents are not mentioned. Without a defined comparison group, the ability to measure improvements in differences between advantaged and disadvantaged will be compromised (Marmot, 2010). It was interesting to find that adolescent identities in terms of the risks of living close to busy roads and transportation sources of pollution were shared between both the plan and the focus group discussions. Adolescents appeared to be able to discuss their asthma-related social identity across the ecological levels from individual perspectives to class-based perspectives relating to advantage and ‘‘falling behind.’’ In the demographic interview, they were more likely to say that where they lived or the type of work their parents had mattered more to their management of asthma than other demographic

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factors such as age or their grade level. Other adolescents struggled with whether asthma did or did not ‘‘hold me back’’ but seemed to agree with other researchers that their struggles with asthma management increased their feelings of loneliness (Rhee et al., 2007). Further exploration of the ways adolescents from marginalized communities experience AMD and negotiate their identities is warranted to advance their voice within national and statewide planning efforts.

New Topics Introduced by Adolescents The adolescents in this study introduced new topics they considered important community-level factors influencing AMD. From the findings concerning the discussions of ‘‘we had to move,’’ it appeared that adolescents were aware of the processes of gentrification that have been occurring in Central and Southeast Seattle (McGee, 2008). Even though the topic of urban mobility has been a national discussion for those concerned about poverty (de Souza Briggs & Keys, 2009), it has only recently begun to be discussed as a determinant of AMD (Hill, Graham, & Divgi, 2011). More importantly, for the purposes of this analysis, the topic of ‘‘we had to move’’ may have been indicative of a more profound power relation related to the sociocultural system topics of segregation and racism. Segregation in urban areas has profound social, economic, and health-related consequences for some African American adolescents. One of these consequences is the depression of home prices and the subsequent discriminatory exploitation of this by real estate developers and landlords (Williams & Mohammed, 2009). Housing pressures in recent years have been forcing the relocation of disproportionate numbers of African Americans out of Central Seattle and into south King County (Acevedo-Garcia, Osypuk, McArdle, & Williams, 2008). School nurses working in urban schools where gentrification is occurring should be vigilant to the effects of such neighborhood upheaval on their student’s abilities to manage asthma. The important topics of urban migration and discrimination might not have been personally or professionally relevant to the policy makers. It has been noted that the lack of diversity on asthma guideline committees may impact the application of these guidelines in diverse settings (Wong, Miravitlles, Chisholm, & Krishnan, 2014). Consequently, in addition to the potential lack of experience of Washington asthma policy makers in working in gentrifying communities, the possible lack of self-identified African American persons among policy makers may have rendered them vulnerable to missing important observations in a variety of disparity discussions. In a similar way, the new topic of school exposures appears to show that adolescents are aware of the unfair and unequal allocation of activities (in this case athletic facilities) and resources (such as good nutrition) for asthma management afforded to them. The field note observations of the

animation adolescent participants exhibited when discussing these exposures further emphasizes the significance of these topics to them. Strategies targeting asthma management in the schools usually focus on indoor air quality and school nursing or other health care services (Wheeler, Merkle, Gerald, & Taggart, 2006; Yow et al., 2013). While there are emerging discussions concerning both asthma management and nutrition in Latino high schools (Davis et al., 2008), discussions on other school exposures such as inequalities in physical design for stairs and athletic facilities have not hitherto been described as important for addressing AMD. Being late for class related to shortness of breath from climbing the stairs or being unable to fully engage in athletics might further marginalize those low-income African American students with asthma who are already facing tremendous challenges to succeed in schools. While the urban high schools in this study had recently been refurbished and renovated, the existence of these discussions suggests that design features important to youth with asthma were not necessarily taken into account. School nurses working in inner city schools with multistory buildings and limited athletic facilities should be extra vigilant in seeking ways to mitigate the impact of the built environment on their students with asthma.

Limitations As a qualitative study, the intent was to gather data from a small number of adolescents in one community on their perspectives of a local problem. The intent behind this study was not to generalize these findings to other communities. As a critical theoretical methodology, researcher influence on the collection of data is assumed. The facilitated discussions and slide show used by the facilitator to explain AMD may have had an influence on what information on AMD the youth chose to talk about and use to make their phototexts but was balanced through reflexive journaling and debriefs with the African American youth facilitator. While care was taken to improve rigor through the use feedback systems from additional researchers, it is possible that some discussions may have been masked from observation because of the power imbalance between the researcher and the participants. Lastly, this study was cross-sectional and did not track discussion/discourse change over time.

Implications for School Nursing and School Health Services These findings suggest some new strategies for school nurses in mitigating or transforming AMD in African American youth. Nurses should become better advocates for students in negotiating the complex geographic and structural inequities they face in the school and community environments. Such strategies might simply include expanding their assessments of youth with asthma to better understand their living situations (e.g., moving residences) and working to

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mitigate school-related deficits in nutrition and athletic opportunities. School health service administrators should also consider how the built environment (e.g., the number of stairs) of some schools in their districts might disproportionally place some students with asthma at a disadvantage compared to other schools. Photovoice methods might provide nurses with an assessment strategy that adolescents find accessible. In this study, adolescents embraced this method and the only challenges were with equipment costs and finding adequate space and time to discuss the photos. It is not enough, however, that strategies be adopted to mitigate the effects of residential mobility and school exposures on AMD. The adolescents in the study clearly voiced their concerns about ‘‘falling behind’’ compared to other children because of the multilevel challenges they face. Such challenges can only be addressed if policy makers and school nurses consider transforming the structural and other impacts of discrimination experienced by African American youth in the school. For multilevel approaches to succeed, then, school nurses need to become stronger advocates for the voice of youth in State planning activities. In this case, for example, the State planners could have simply invested more time in exploring and addressing the concerns voiced by African American youth through their phototexts.

Conclusion This research study has described the voice of African American adolescents with asthma and the ways policies concerning school nursing and health care services may be constraining or ignoring their voice. In particular, the youth in this study were vocal in connecting their experiences of discrimination to their ability to manage asthma. Policy makers remain largely unaware of the importance of these experiences in designing plans to address AMD. Through photovoice, African American youth with asthma made visible their multilevel concerns over disparities involving new ideas on school exposures and urban migration. Acknowledgments I wish to acknowledge the courageous work of the 20 young women and men from Seattle schools, who contributed their ideas and photographs to this study. The Washington Asthma Initiative, Seattle School nurses, Lynne Oliphant, Chris Cordell, Robin Fleming, Patricia McBrien, Seattle Parks Department; and youth facilitators Chelsey Richardson, Nikitta Vinson, and Kevin Roberson contributed critical study support. Many thanks to Doris Boutain, Gail Kieckhefer, Selina Mohammed, Sean Sullivan, Marie- Anne Sanon, Stephen Padgett, and Fuqin Liu for reading drafts of this manuscript.

Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Psi Chapter of Sigma Theta Tau provided funding for this study.

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Author Biography Robin Evans-Agnew, PhD, RN, is an assistant professor at Nursing and Healthcare Leadership, University of Washington Tacoma.

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Asthma Management Disparities: A Photovoice Investigation with African American Youth.

Disparities in asthma management are a burden on African American youth. The objective of this study is to describe and compare the discourses of asth...
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