- Email: [email protected]
Primary care experiences and preferences of urban youth
ORIGINAL ARTICLE
Prima y Care Experiencesand Preferencesof Urban Youth
-1
Shoshana
Durrell
L. Rosenfeld,
J. Fox,
Maurice
BS, W.
Cathryn
groups that meet regularly at corn- ” munity health centers or akrschool programs. Urban adolescents are most concerned with being respected and treated well by primary care providers. They want to be listened to, to have their problems taken seriously, and to be treated with dignity and respect. Participants expressed strong preferences regarding sex, sexual orientation, and language of providers, but not for race or ethnicity. Qualitative methods such as focus groups give a voice to youth to advocate for access to adolescent-specific health services. Further research is needed to corroborate the results of this study, to expand our understanding of existing problems, and to investigate the predictors of health care use by vulnerable youth. J Pediatr Health Care. (1996). 70,151-160.
July/August
1996
A
M.
Melchiono,
MD,
R. Woods,
RN,
Keenan,
BSN,
RN,
L. Samples,
& Elizabeth
r&nging from 13 to 21 21)4%qs yeqs were conduct’ ‘ed between Apri I 19% and June ” 1994. Participants were recruited through through exiting exkting peer leadership
Peter
MPH,
RN,
C-FNP, MPH,
MD,
MPH
s consumersof adolescenthealth services,young people
have preferencesand opinions about where they get their care, who knows they are getting care,how long they have to spend time in the waiting room, and what constitutes a “good” relationship with a primary careprovider. When established,positive relationships with primary care providers can last for years, as the adolescentreturns time and again for health care services.However, use of primary care servicesby adolescents is often inconsistent and sparse, leading to lack of diagnosis, Shoshana L. Rosenfeld is a Private Consultant at the Division of Adolescenffoung Children’s Hospital and Harvard Medical School in Boston, Massachusetts.
Adult Medicine
at
The Boston HAPPENS (HIV Adolescent Provider and Peer Education Nehvork for Services) Program is funded in part by a grant from the Health Resources and Services Administration, Special Projects of National Significance (HRSA BRH 970155-01-o) and the Maternal and Child Health Bureau (Project MCJMA 259195, Title 5, Social Security Act), HRSA, Department of Health and Human Services. Reprint requests: Elizabeth R. Woods, MD, MPH, Division Hospital, 300 Longwood Ave., Boston, MA 02115.
of Adolescent/YoungAdult
Copyright 0 1996 by the National association 0891~5245/96/$5.00 + 025/l/68130
Nurse Associates
of Pediatric
Medicine
Children’s
& Practitioners
151
ORIGINAL
treatment, and follow-up and an increase in adolescent morbidity and mortality (Dryfoos, 1990; Elster, 1993). Systemic factors contributing to inconsistent use include barriers to access such as lack of payment methods, fragmented and uncoordinated services, fear of breach of confidentiality, lack of information about adolescent-specific health care facilities, disenchantment with adults, and lack of transportation to clinic sites (Cheng, Savageau, Sattier, & Dewitt, 1993; Klein, Slag, Elster, & Schonberg, 1992). These barriers most dramatically jeopardize the health of urban youth, youth of color, those living in poverty, homeless and throwaway youth, and gay and lesbian youth. These young people, often the most disenfranchised, bear alarming and disproportionate rates of human immunodeficiency virus (HIV) disease, homicide, suicide, unplanned pregnancy, substance abuse, and sexually transmitted diseases (Irwin, Brindis, Brodt, Bennett, & Rodriquez, 1991; US Congress, 1991). The threats to their health can, however, be addressed, treated, or prevented through provision and consistent use of comprehensive primary care services oriented towards prevention and empowerment. What then can primary care providers do to improve services to the most vulnerable groups of young people? The literature shows that adolescent providers are investigating a number of approaches with the goal of bettering health services for youth. These include advocating for the inclusion of adolescents in a national agenda for health reform (English, 1993; Hein, 1993) and developing peer-centered models for outreach, support, training, and health education (Rosenfeld, Shalwitz, & Sasser, 1993). Several studies have been done in which youth themselves have been asked about how to improve adolescent
152
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10 Number
4
TABLE 1 Females
11 9
Males Age Range (yr) 13-21, Openly
lesbian
Openly Openly
gay heterosexual
average
16.8 2 5 13
Race/ethnic&y
African-American
12
Latino/Latina
4
Caucasian
3
Native
1
American
health care services (Berenson & Wiemann, 1993; Lena et al., 1993; Marks, Malizio, Hoch, Brody, & Risher, 1983; Resnick, Blum, &
adolescent experiences, opinions, and preferences about primary care.
Hedin, 1980). Cheng and her colleagues (1993) surveyed high school students and found that many of them report that they would not seek health services because they were concerned about issues of confidentiality. Winter and Brekenmaker (1991), in looking at adolescent use of family planning services, found that young people who received youth-specific services used their contraceptive method more consistently and longer than those receiving general family planning services. Few stud-
et al.
ies, however, have used a qualitative approach to assess adoIescent attitudes and preferences about their personal primary care experiences. This focus group project was a pilot inquiry using qualitative methods to explore a range of adolescent experiences, opinions, and preferences about primary care. It was completed as part of the first 6 months of a Federal grant from Special Projects of National Significance, Health Resources and Services Administration to help guide the development and coordination of innovative services for HIV-positive and at-risk youth in Boston. The objectives of the focus group project were (a) to gain a better understanding of specific youth experiences (positive and negative) with adolescent primary care providers and health care settings, (b) to gain an understanding of the special needs of youth that would improve their experiences in seeking and receiving primary care services, and (c) to solicit youth input and suggestions regarding how to design and implement youth-specific health services that are maximally accessible, sensitive, and responsive to youth needs.
METHODS Sample Population Four focus groups were conducted with a total of 20 urban adolescents between April 1994 and June 1994. Participants were recruited through existing peer leadership groups that meet regularly at local health centers or after-school programs. The demographics of the total group were diverse in terms of race, sex, and sexual orientation (Table 1). Participants were drawn from the eight member agencies that make up the Boston HAPPENS Program collaboration. The eight include Children’s Hospital, Boston City Hospital, New England Medical Center, Dimock Community Health
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Rosenfeld et al.
Center, Bridge Over Troubled Waters, Justice Resource Institute, Roxbury Comprehensive Community Health Center, and Martha Eliot Health Center.
The focus group model was chosen because as a qualitative method it allowed for relatively extensive yet pointed discussion and exchange. An “Exploratory” approach to the focus group project, as described by Becker and her colleagues (1992), was used. This approach provides baseline data about the experiences, attitudes, and opinions of the target group and helps to begin to generate some hypotheses, although they are not necessarily generalizable. In this approach interaction between individual group members is less important than comments and contributions from each group member in response to most, if not all, questions posed (Becker et al., 1992). However, adolescents often engage well with each other about a topic in addition to directing their comments to the facilitator. The underlying premise of using a focus group model was that young people themselves are the best informants about their experiences are best equipped to make suggestions for improving primary care services for youth (Folch-Lyon & Trost, 1981r. A qualitative inquiry method such as the focus group was especially conducive to generating discussion and critique of services that can be difficult to access and negotiate, can be frightening, and involve youth disclosure of very personal, private information. As a nonjudgmental forum the focus group was one of the least threatening environments in which young people could openly discuss their experiences, express opinions, and make suggestions. Although qualitative information could have been obtained through one-on-one interviews, focus groups were relatively cost- and time-effective and allowed
OF PEDIATRIC
1. Imagine
that you wake
up tomorrow
you go for health care? How
and you have a chronic
would
you get there? Would
illness. Where
would
you bring anyone
with you?
If so, who?
Model of Inquiry
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BOX 1 FOCUS GROUP QUESTIONS
HEALTH
CARE
2. Who
would
3. What
are the qualities
you talk to about
4. Is the gender
of your health
5. Is the race/culture 6. Should 7. Does 8. Imagine
10. What
provider
important
provider
and service
providers).
care provider?
to you? Discuss.
important
speak the same first language
to you? Discuss. as you? How
do you feel about
Discuss.
it matter
to you if your provider
now that your partner
you do? Where 9. What
personal
like to have in a health
of your health
the provider
interpreters?
your illness? (includes
you would
would
is gay or straight?
is diagnosed
Discuss.
with an STD and tells you.What
would
you go for care?
has been your best experience has been your worst
1 I. Please tell me whether
since age 12 with
experience
a health
care provider?
since age 12 with a health care provider?
you feel comfortable
seeking
health care in the following
places: Hospital
clinic...why
or why not?
Neighborhood
health center...
Private
office...why
doctor’s
Large group
practice
why or why not? or why not?
or HMO...why
or why not?
12. What
are the things that make you want to go back to the same provider?
13. What
are some of the reasons
you would
for access to a greater number of youth. In addition, it is the hope of the Boston HAPPENS Program that the focus group sessions were affirming for participants because they were recognized as consumers and were given a unique opportunity to critique vital services about which their opinions are rarely solicited. Participants were asked to answer 13 questions related to their experiences and preferences regarding primary care (Box 1). At the start of each focus group it was explained that each participant had the right to refuse to answer any question at any time during this session. The participants were told that there were no right or wrong answers to the questions, and they were assured of confidentiality for the duration of the focus group project and any written reports that may ensue as a result of the project. At the end of each group participants were given a business card for the nurse at Children’s Hospital in the
not go back?
event they had further questions or wanted to talk with a provider in a one-to-one setting. Each l- to 1 ‘/z-hour group was made up of three to seven young people and was conducted by a facilitator (an experienced focus group consultant) and a recorder/observer (a staff person from Children’s Hospital). Once participants’ verbal permission had been granted and confidentiality was assured, all comments were recorded in writing. This was considered part of the consumer opinion of the Boston HAPPENS Program and was not considered as involving Human Subjects by our Human Investigation Committee. Snacks and drinks were provided for the youth, and at the conclusion of each group participants received a stipend of $10.00 for their time and contribution. Data Analysis The members of the project team have attempted to include a repre-
July/August
1996
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53
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BOX 2 SUMMARY OF FACTORS CONTRIBUTING AND NEGATIVE PRIMARY CARE EXPERIENCES Factors
contributing
Receiving
to positive
care from
friendly,
youth
a provider
and has a gentle
experiences
who is competent,
relaxed,
care from
a provider
who will maintain
Receiving
care from
a provider
who
and lay terminology,
Receiving
care from
caring,
understanding,
manner.
Receiving language
TO POSITIVE
confidentiality.
is a good listener,
and communicates
a provider
who
answers
questions
using clear
very honestly.
is a good teacher
(i.e., provides
good patient
education). Seeing a provider
who
Seeing a provider
who explains
Seeing a provider
who talks female
Going
to a provider
who
Knowing
that a parent
Coming
out to a doctor
and demonstrate Having
access
Experiencing Factors
is not rushed
invites
as gay or lesbian
to health
care through waiting
to negative
youth
Seeing a provider
who is rough,
Receiving
care from a provider
health
Receiving
a pelvic
exam from
when
long, tiring waiting
as “not good enough”
Having
a lack of information
Losing
access
Having
to wear johnnies.
to a known
Volume
clinic
4
respond
the insurance
of a parent.
supportively
time at a clinic. experiences who does not explain without
preference
periods
before
if uninsured,
about where
that was gloomy,
10 Number
the doctor
by gay youth.
procedures,
explaining provider
does not use
them. each time.
is for a female. being seen by providers. of color,
or non-English-speaking.
to go for free care.
site due to Medicaid
prohibition.
drawn,
dim, or dirty.
sentative range of youth comments and experiences and to report trends in responses without generalizing inappropriately or drawing false conclusions. Group discussions were observed and transcribed verbatim by a youth-service provider from Children’s Hospital. Units of analysis were statements reflecting experiences with primary care providers /systems and statements reflecting preferences regarding primary care providers/ systems. These statements were highlighted and inductively grouped into similar categories. Both the focus group consultant and the children’s Hospital provider were pre-
I.54
exam.
the exam.
a teen to the clinic.
of issues faced
more than two times to have blood
a clinic
step of a pelvic
to stay during
a new and unknown
a male doctor
Being treated
Being stuck
every
and having
treatments
Experiencing
Visiting
through
to be stressed. them.
mean, or rushed.
and who prescribes
Being assigned
patients
doing
does not have to accompany
a “reasonable”
lay terms,
before
boyfriendslgififriends
an understanding
contributing
and does not appear
procedures
sent at the focus group sessions; they reviewed the data, came to agreement on its interpretation, and together identified categories. To ensure consistency the team of six authors carefully checked that data had been placed in appropriate categories, thus allowing for a systematic identification of trends. As a pilot project it is hoped that this inquiry will stimulate more indepth qualitative research into these questions.
RESULTS/DISCUSSION Although participants in the focus groups were initially unsure of their task, they became actively engaged
et al.
in the process once they understood their role. Nearly all the youth had something to say about every question, and the comments of one youth often triggered another to share additional thoughts or recollections. Participation was enthusiastic, and the youth seemed to answer questions with sincerity, honesty, and integrity. The youth had numerous experiences to share and had strong opinions on a number of issues such as extreme reluctance to use interpreters, stating a general preference to see female providers (most had seen women providers since birth) and sharing overall willingness to see a provider of any race or ethnicity as long as the provider was gentle, nonjudgmental, and competent (Box 2). Focus Contributing Experiences
to Positive
Focus group participants were asked to describe the qualities that they would like to have in a health care provider and the kinds of things that would make them want to return or not return to see the same provider. Focus group participants were also asked to discuss their best and worst experiences with a health care provider since the age of 12 years. Unanimously, the competence, manner, and approach of the health care provider were identified as factors most important to focus group participants in seeking, receiving, and returning for care. Confidentiality, communication style, continuity of care, medical competence, availability, and openness about sexual orientation (to gay and lesbian youth) were also important factors leading to a positive experience with primary care providers. I like my doctor because she is just
somebody who sits there and listens to your problems. 1 just want someone who knows what they’re doing. As long as they know what they’re doing, then ifs cool.
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My doctor is just herself: She don’t do what some of them old doctors say and d0.
I’d sit home with a 103 fever if I couldn’t seemy doctor. If they don’t know you, I have to explain my whole history. I want to have a doctor who knows what teens are going through. I like (my nurse practitioner) because he talks to you like afriend. I would go back if the doctor had a good attitude. I want to go to someoneI trust. If they trust me, I71 trust them. And although health care providers have been carrying beepers for years, the fact that they are now a symbol of status in urban youth culture contributed to this adolescent’s positive feelings towards her provider. My doctor is cool. I’ve got her beeper number. Positive Experiences of Youth With Health Care Providers Participants were asked, “What has been your best experience since age 12 with a health care provider?” All but one of the focus group participants were able to identify at least one positive experience related to receiving primary care. In general, they recounted stories in which providers were patient, understanding, and reassuring in a situation that was frightening or new. Many of the gay and lesbian focus group participants told anecdotes about positive provider responses to having come out as gay, lesbian, or bisexual during a primary care visit. When 1 was getting my first pelvic exam they were nice and made me feel comfortable. They told me everything. Knowing that you can go by yourself and that your mother doesn‘t have to come in with you. Knowing that it’s just between you and your doctor. That? what made it the bestfor me. When I was af?eshman in high school I got a physical and was cleared to play football.
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When I came out to the doctor and he came out to me. That was so positive. He helped me a lot. He referred me to a gay therapist andfamily therapy, and he also told me where I could get tested (for HIV). When I got a physical and went to McDonalds with a voucher from my doctor and we went together. When I had my first pelvic exam she talked me through it. She explained as she went along. I was real tense but the doctor helped. I wouldn’t know how to explain it to you.
experiencle ‘s~inceage 12 with a health care provider?”
Factors Contributing Experiences
to Negative
Factors contributing to negative experiences were, as anticipated, the opposite of the positive factors described previously. Participants expressed dissatisfaction with providers who are rough or rushed or who have ineffective communication styles, for example, do not explain procedures, do not use lay terms, prescribe treatments without explaining them. Participants’ experiences were also affected by long waiting periods, lack of continuity of care, and being assigned a male provider when preference was for a female. Some youth spoke about boundary issues such as a provider not fully closing a door, or lifting a sheet without indicating they were about to do so. Some youth complained about having to wear johnnies, saying that they were “sterile” (I. e., cold and impersonal) and did not cover them fully.
et al.
A number of participants described experiences in which they lost access to a known clinic site because of a Medicaid prohibition, or because a family member had lost his or her health insurance. One member said that he did not even know where to get free, youth-specific primary care in Boston. Several participants also recounted that on occasion they had been treated as if they were “less than” or “not good enough” because they were youth of color and spoke English as a second language. Some further comments from youth included the following. Every 6 months you need to have a pap smear. Who wants a d@erent person looking up in you ? I had a man doctor and he was touching me. I stood up. I was used to a woman doctor. That was the first time I had a man. 1 wouldn’t go back if the doctor had a bad attitude, like she didn’t want to see me. I wouldn’t go back if the doctor talked like a computer. I wouldn’t go backif me and the doctor didn’t get along. I wouldn’t go back if she was impersonal. 1 wouldn’t go back if the people at the ftont deskwere being rude. I wouldn’t go back if I had to wait too long. Negative Experiences With Health Care Providers Participants were asked, “What has been your worst experience since age 12 with a health care provider?” and all were able to recount stories in response to this question. Most negative experiences in primary care settings were related to poor interactions with providers, assistants, or receptionists, as referenced previously. With a less than gentle approach, speaking in medical rather than lay terminology, and lacking awareness about the issues faced by gay and lesbian youth emerged as themes.
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BOX 3 SUMMARY OFYOUTH OPINIONS AND PREFERENCES REGARDING PRIMARY CARE Most participants At a neighborhood Either alone,
reported
a preference
health
center
with a close and trusted
From a female
provider
regardless
From an openly
heterosexual
From an openly
gay provider,
From a provider
who speaks
whether
the provider
for seeking
or ambulatory friend,or
of gender
provider,
or receiving
care
care teen clinic some with or sexual
if heterosexual;
mother
if condition
was serious
orientation or from
a closeted
gay provider
if gay English clearly
is speaking
and can be easily understood
in the youth’
s first language;
regardless
of
with no interpreter
involved.
When 1 was 13 I went to (an HMO). They told me I was anemic. They wanted to give me a pill and wanted to give me a pregnancy test. They did not explain “anemic.” The word was so big I didn’t understand. I was not sexually active. 1had to wait longer whepzI didn’t have insurance. They treat you like you’re not good enough to get health care. Once when I was feeling suicidal my doctor tried for 3 hours to guess the reason. I needed to talk about my sexuality but he never asked.He sent me to a hospital and I wanted a woman or a gay person to talk to... But it took days before Igot to seesomeone who was cool about sexual prefeuazce.The doctors just made the situation worse and they couldn’t understand why it was important. It was a horrible experience. They always assume that patients are straight. My worst was when I went to a mean dental assistant. She was rough. She was pregnant and that hard stomach rubbed on me a lot. When a lady gave me a needle shekept moving it and had to do it over. Shehad an attitude problem. (Where I was) you have to wait and sign forms. They make you wait longer if you don’t speakEnglish. Opinions Regarding
and Preferences Primary Care
of Youth
All of the focus group participants had opinions and preferences about the topics covered. In general, the trends in responses reflect a prefer-
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ence for what is known and familiar. This may be because seeking health services can provoke feelings of fear and vulnerability (Box 3). Youth were asked to, “Imagine that you wake up tomorrow and you have a chronic illness. Where would you go for health care? How would you get there? Would you bring anyone with you? If so, who? Who would you talk to about your illness?” They responded. I‘dgo to my neighborhoodhealth center. I’d go to the gay health ten ter. I’d go to my regular doctor. 1 would get there by cab. I’D take the T (Boston subway systend. I‘d walk. I’d make somebody drive me. My brother would take me. Ifit was a major emergency,I’d call an ambulance. Even if it wasn’t severe, 1 wouldn’t take the bus, I’d take a cab. I’d go alone. (over 50% of respondents) IfI was scaredand needed support I’d bring my mom or bestfiiend. It depends on my illness. I’d have to think about who 1 trust. Myfirst idea is to call my cousin. 1 would talk to my mother. I would tell certainfiiends. 1 would talk to my bestfiiend. I would ty to find a specialist on the illness. If it was HIV, I would talk to my mother and my girlfviend. (lesbian youth).
1 would keep it in my family. 1 would only talk to my cousin. I could only tell my family what was happening because if1 told myfviends and it was personal, it would end my friendships. rf it was HIV I’d tell my parents afte a while. 1 would wait until 1feel comfortable. 1 don’t tell nobody what I do...Ifl was dying 1 wouldn’t tell anybody. When participants were asked, “Is the gender of your health provider important to you?” they responded, *‘Yes.” All female participants in the groups preferred to see a female provider. All but one of the heterosexual male members also preferred to see a female. Almost all participants had seen female providers since birth and expressed comfort and familiarity with them. It depends on what it’s for. For eyes ears or dentist it doesn’t matter. For a physical it has to be afemale. 1 went crazy when a man doctor wan ted to give me a physical. I refused and got a woman doctor. When I was young 1had a man doctor. But since 1got my period 1 have to have a woman. I’m concerned about male doctors molestingfemales. As a gay male, I would prefer a gay male for urology. Otherwise a sympatheticfemale is OK. You can’t explain gay sexual health problems to a straight male. 1 would want somebody young, defynitely under 40. Youth were asked, “Is the race/culture of your health provider important to you?” They responded, “No.” (Unanimous among all youth.) It doesn’t matter. People are people as long as they are doing their job. As long as she knows what she’s doing and speaks good English so 1 can understand her. It would be cool to seea black doctor, but he doesn’t have to be. Youth were asked, “Should the provider speak the same first lan-
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guage as you? How do you feel about interpreters?” The topic of interpreters stirred strong emotions for participants. The responses conveyed the importance of trust, clarity of communication, and perhaps most important, the sanctity of confidentiality. It doesn’t matter as long as they speak good English (unanimous). It doesn’t matter becauseI speak both languages (Spanish and English). I’d like to see a doctor who spoke Spanish, but I don’t have to. When I had a urina y tract i+ction it hurt a lot. They treated mefine, but I couldn’t understand her accent. I would never have an interpreter. It would invade my privacy (unanimous). I don’t want another person to know my business. 1 would leave before I would have an interpreter in the room (unanimous). They (the interpreter) might be spying on you to find out some i?zformation. If a doctor is examining you and another person has to be there it is complicated and awkward. 1 want to know exactly what the doctor was saying. I don’t trust an interpreter won’t make a mistake in the translation. Youth had particularly strong responses and dynamic discussions when they were asked, “Does it matter to you if your provider is gay or straight? What if you found out they were gay?” (The latter question was posed to the heterosexually identified youth.) Whether the sexual orientation of their primary care provider was known or unknown (and it was almost exclusively not known), heterosexually identified youth expressed significant fear and bias against providers who may be perceived or rumored to be gay or lesbian. A lively and heated discussion typically took place among focus group participants in which one member would question why sexual orientation mattered if a provider was competent, while remaining members insisted that they would fear molestation or inappro-
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priate behavior on the part of a gay provider. It was interesting that focus group participants reported no fear of inappropriate behavior on the part of heterosexual providers, although they overwhelmingly reported wanting to see women providers, and one youth did say that she feared a male provider might molest her. The trend among heterosexually identified youth was to state that they would not want to know whether their provider was gay or lesbian and to report that if they did learn such information, they would be inclined to request a different provider regardless of the relationship they had established with the current one. Given the pervasiveness of homophobia and misinformation about gays and lesbians in general, responses to this question probably reflect the perpetuation of widespread myths and lack of acceptance of homosexuality rather than an exceptionally high level of mistrust specifically on the part of youth. Of the gay and lesbian youth, all but two said, Yes, they would prefer a gay or lesbian provider. The heterosexually identified youth gave the following responses. I discriminate against gays. I’m afraid a woman might come on to me. 1 prefer not to know. if she tried to come on to me... 1 don’t know what I’d do. It matters because I would feel uncomfortable. I wouldn’t want anybody gay looking at me. If1 had a lesbian doctor it would concern me. To some girls it wouldn’t matter if they were lesbian or not. 1 probably had one before. If1 don’t know they’re gay it doesn’t matter. If Ifind out, I’m getting another doctor. I would say it to the doctor that 1don’t want them. I would go to someone else and askfor a transfer. 1 would tell the doctor I don’t feel comfortable. I would ask the doctor ifit is true if you are gay or lesbian.
When a gay person talks to you and knows you are straight, it’s like talking to a reg-ularperson. If I felt he did something wrong, I would bring it tip. If it’s a woman, I don’t care. Ifit’s a dude, I care, and I wouldn’t want him (reported by a heterosexually identified male). 1 can’t say unless I’m in that situation. The next question posed was, “Please tell me whether you feel comfortable seeking health care in the following places, and why: hospital clinic, neighborhood health center, private doctor’ s
k”
wheti.i&iy were asked, Woes it matter to you if your provider is gay or straight?”
office, large group practice, or health maintenance organization. Here, again, the trend among youth was to seek what was familiar and comfortable. hospital clinic: 19 yes/l no. It’s just as good as other places. You get better careand it’s lessimpersonal. They seelots ofpeople. They know me there and the adolescent clinic specializesin teens. At a hospital clinic you’re just a small person in a big place. Neighborhood health center: 17 yes/3 no Yes. Because it is smaller. You can grow up there and they know you. No. Becausethere/sno privacy. It depends on the neighborhood area.
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Private doctor’s office: 14 yes/4 no, and two youths did not know what a private doctor’s office was. It’s not as homey. It is just you and that person. It’s too isolated I would be more comfortable with people my own age around. Large group practice or health maintenance organization: 11 yes/9 no. They’re like a mini-hospital. They’re alrightfor mini stufl 1 like my doctor and she is at an HMO. There appeared to be a difference between trends that emerged from heterosexually identified youth
regards to morrogamy;2r@f, “one-night stands,” and betrayal.
compared with those from gay- and lesbian-identified youth when groups were asked, “Imagine now that your partner is diagnosed with an STD and tells you. What would you do? Where would you go for care?” The prominent themes for heterosexually identified youth were anger at their partner and concerns about loss of confidentiality. Responses by these participants were very emotionally charged and often included references to the use of violence. Whether these youth would actually behave in a violent way is unknown, and actual violence probably occurs less frequently than verbal threats of violence made directly to a partner
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or indirectly through conversations with friends. The gay- and lesbianidentified youth also expressed annoyance but were more focused on concern for the health of the partner and the youth himself or herself. No references were made to using violence. It was interesting that the gay and lesbian youth unanimously reported that they would go to their “normal” health care provider to be tested and treated for a sexually transmitted disease, whereas the heterosexually identified youth unanimously reported that they would not go to their “normal place,” for fear of parents or friends finding out that they had a sexually transmitted disease. Gay and lesbian youth may rely on each other for community and support and may be less likely to sever ties than they would be to distance temporarily and reconnect later. Because they also face losses of friends from HIV disease on a fairly regular basis, the gay and lesbian youth may feel less upset by exposure to a treatable sexually transmitted disease than their heterosexual counterparts. It is likely that there are also unique cultural norms in each of these youth subcultures with regards to monogamy, trust, “one-night stands,” and betrayal. Heterosexually identified youth responded with the following. I would be upset, yell, and ask questions. 1 would go crazy, yell, then get checked out and never go out with him again. I would tell him to “Go to hell.” I would be upset becausehe put me in danger. I would kill him. I would go get checked out at Children’s Hospital. Then I would ask her how she got it and smack her. 1 would definitely do something... maybe it would be physical. I would beat her down. She would never leave the house again. If 1 had no STD I would “ill” and “jet” (i. e., this adolescent male would possibly commit physical violence
against his female partner and would leave the relationship). I’m not afraid to die. I just don’t want to die hurting. I would not go to my normal place to get checked out so my parents would notfind out. I would go elsewhere to get it taken care of (unanimous). Gay- and lesbian-identified youth responded in the following manner. I would take care of him, have safesex, or abstain for a while. I would go with him to get treated. I would get medical carefor the person, get myself tested, and get preventative care. I might be annoyed about where she got it, but I would deal with it after she was cured. I would be pissed off but I would help him get it taken care of I would get treated in the same place I would go if I had a chronic illness (unanimous). Summary of Recommendations Based on the Focus Group Project Recommendations are divided into youth- and provider-specific categories. Youth-specific recommendations focus on strategies for enhancing youth information, comfort, and skill in accessing primary care services. Provider-specific recommendations offer strategies for enhancing training and education to improve primary care services for youth. Examples of youth-specific recommendations include developing creative materials by and for youth to increase information about where and how to accessprimary care services and what to expect in the process of seeking these services. The recommendations can be applied and expanded on by these youth. Provider-specific recommendations identify topics to emphasize in provider education such as enhanced communication and history-taking skills and developing skills for working with sexual minority youth.
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-Q; ORIGINAL ARTICLE
Rosenfeld
CONCLUSION In general, findings from the Boston HAPPENS Program focus group pilot project revealed that nearly all youth participants were able to recount both positive and negative primary care experiences. Participants spoke at length about factors that positively influence their experiences. These often included receiving care from a provider who is friendly, gentle, understanding, and has good communication skills. Participants also discussed factors that negatively influence their pri-
more sensiti&o”
the
ii
needs of youth including those in urban, suburban, and rural communities.
mary care experiences including receiving care from a provider who is rough, mean, rushed, or has poor communication skills. Participants also expressed strong preferences regarding sex and sexual orientation of providers but not for race or ethnicity, There were interesting differences between heterosexually identified youth and gay- and lesbian-identified youth in terms of their reported responses to having a partner with a sexually transmitted disease. The variance in responses may be due to differences between these two subcultures of urban adolescents.
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Looking at the collection of participant responses in a broader sense, it appears that an underlying theme for our youth was wanting to be respected. Through the youths’ examples of “best” and “worst” experiences and their references to factors positively and negatively affecting their care, the youths indicated over and over again that they wanted to be treated well. They wanted to be listened to, they wanted to have their problems taken seriously, and they wanted to be treated with the utmost dignity and respect. It was interesting that these needs are not unlike those of any self-respecting adult when she or he is seeking primary care services. However, in a society in which young people are rarely taken seriously, are often disrespected, and have no economic or political power, it makes sense that youths would desire a status they perceive to be equal to that of adults. This is especially crucial in a realm in which they feel they can exercise some limited sense of control...that is, in exercising control over their own physical bodies. There were a number of limitations of this pilot project. First, with a sample of only 20 youth and an “exploratory” approach, the results cannot be generalized to the larger population of urban adolescents. It should also be noted that participants were from youth leadership groups, which may or may not reflect different experiences and opinions than the average youth. However, the consistencies and repetition in trends of responses by focus group participants suggest that other youth may respond in similar ways. Second, although self-reporting about past experiences with primary care providers is likely to be fairly accurate, selfreporting about what a young person says she or he would do in a given situation may vary significantly from what the youth actual-
et al.
ly does in that situation. In this study this especially applies to the client leaving a health care provider if the patient learns that she or he is gay or older or stating that the client would physically assault a sexual partner, if that partner has a sexually transmitted disease. Nevertheless it is important for adolescent providers to educate themselves and their patients about the issues of homophobia and domestic violence. Last, we chose not to label participant comments (i.e., African American girl, gay white boy) so as not to compromise anonymity within our small sample. In a larger project it would be important to label comments according to their sources and to incorporate this race and sex identification into the analysis. This study should be used to generate hypothesis for further study. There are numerous areas to study further based on the results of this pilot. First, this particular survey should be done in different formats with larger and more diverse groups to clarify the types of primary care adolescents are most likely to access and use over time. A broader survey could focus very specifically on those issues raised to the fore in our study: questions related to sexual orientation, ethnicity, language of provider, and use of interpreters. It was in these areas that our population expressed the strongest preferences. Further study could clarify factors underlying these opinions and identify more specific ways in which primary care can be made more sensitive to the needs of youth including those in urban, suburban, and rural communities. For example, is the use of an interpreter unanimously rejected in all cases by every adolescent? Our hypothesis would be no, but there are likely to be some very critical factors for making use of interpreters successful with adoles-
July/August
1996
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Rosenfeld et al.
ORIGINAL ARTICLE
cents. Further study would also help to formulate and fine-tune targeted questions to be used with larger, more diverse groups of adolescents in surveys or intervention studies. Such questions would in turn add to our knowledge base of primary care needs and preferences of broad populations of youth. This pilot inquiry is a first step in understanding the primary care experiences and preferences of urban adolescents, especially as these experiences and preferences relate to adolescent use of primary care. It is important to identify blatant barriers to care as described by adolescents and more subtle barriers that may influence young people’s decisions to seek or return for care. Further research should investigate the predictors of health care use by vulnerable youth such as the actual impact of provider demographics or health care use and types of services and sites accessed by these youth. Improved primary care services will increase the likelihood that youth will raise difficult and sensitive issues such as sexual orientation, depression, suicidal feelings, physical, emotional, or sexual abuse, struggles with drug and alcohol dependency or addiction, and the complexities, fears, and frustrations of integrating harm reduction into day-to-day life. Improved primary care services, that is, services in which youth are consistently treated with dignity, respect, and compassion, are likely to make a significant difference in the numbers of youth who do seek and return for care. Qualitative approaches should be used in adolescent health research to flesh out our understanding of existing problems and to take a closer look at the constellation of factors affecting adolescent health care use as perceived by young people themselves.
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The Boston HAPPENS Program would like to express our appreciation to the young people who agreed to participate in this focus project. Their honesty and input will help improve service delivery to youth throughout the city. The Boston HAPPENS Program would also like to thank James Collins of TECLY (Tobacco Education for Gay and Lesbian Youth) and Jeremy Cattani of AIDS Action Committee and Sterling Stowell of PROUD, Inc. for helping to coordinate youth scheduling and participation in focus groups. In addition, we thank Robin Cuilfoy for her assistance in preparation of materials and the manuscript.
Irwin,
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12,443~449. of revolution:
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520-523.
JOURNAL
OF PEDIATRIC
HEALTH
CARE
Prima y Care Experiencesand Preferencesof Urban Youth
-1
Shoshana
Durrell
L. Rosenfeld,
J. Fox,
Maurice
BS, W.
Cathryn
groups that meet regularly at corn- ” munity health centers or akrschool programs. Urban adolescents are most concerned with being respected and treated well by primary care providers. They want to be listened to, to have their problems taken seriously, and to be treated with dignity and respect. Participants expressed strong preferences regarding sex, sexual orientation, and language of providers, but not for race or ethnicity. Qualitative methods such as focus groups give a voice to youth to advocate for access to adolescent-specific health services. Further research is needed to corroborate the results of this study, to expand our understanding of existing problems, and to investigate the predictors of health care use by vulnerable youth. J Pediatr Health Care. (1996). 70,151-160.
July/August
1996
A
M.
Melchiono,
MD,
R. Woods,
RN,
Keenan,
BSN,
RN,
L. Samples,
& Elizabeth
r&nging from 13 to 21 21)4%qs yeqs were conduct’ ‘ed between Apri I 19% and June ” 1994. Participants were recruited through through exiting exkting peer leadership
Peter
MPH,
RN,
C-FNP, MPH,
MD,
MPH
s consumersof adolescenthealth services,young people
have preferencesand opinions about where they get their care, who knows they are getting care,how long they have to spend time in the waiting room, and what constitutes a “good” relationship with a primary careprovider. When established,positive relationships with primary care providers can last for years, as the adolescentreturns time and again for health care services.However, use of primary care servicesby adolescents is often inconsistent and sparse, leading to lack of diagnosis, Shoshana L. Rosenfeld is a Private Consultant at the Division of Adolescenffoung Children’s Hospital and Harvard Medical School in Boston, Massachusetts.
Adult Medicine
at
The Boston HAPPENS (HIV Adolescent Provider and Peer Education Nehvork for Services) Program is funded in part by a grant from the Health Resources and Services Administration, Special Projects of National Significance (HRSA BRH 970155-01-o) and the Maternal and Child Health Bureau (Project MCJMA 259195, Title 5, Social Security Act), HRSA, Department of Health and Human Services. Reprint requests: Elizabeth R. Woods, MD, MPH, Division Hospital, 300 Longwood Ave., Boston, MA 02115.
of Adolescent/YoungAdult
Copyright 0 1996 by the National association 0891~5245/96/$5.00 + 025/l/68130
Nurse Associates
of Pediatric
Medicine
Children’s
& Practitioners
151
ORIGINAL
treatment, and follow-up and an increase in adolescent morbidity and mortality (Dryfoos, 1990; Elster, 1993). Systemic factors contributing to inconsistent use include barriers to access such as lack of payment methods, fragmented and uncoordinated services, fear of breach of confidentiality, lack of information about adolescent-specific health care facilities, disenchantment with adults, and lack of transportation to clinic sites (Cheng, Savageau, Sattier, & Dewitt, 1993; Klein, Slag, Elster, & Schonberg, 1992). These barriers most dramatically jeopardize the health of urban youth, youth of color, those living in poverty, homeless and throwaway youth, and gay and lesbian youth. These young people, often the most disenfranchised, bear alarming and disproportionate rates of human immunodeficiency virus (HIV) disease, homicide, suicide, unplanned pregnancy, substance abuse, and sexually transmitted diseases (Irwin, Brindis, Brodt, Bennett, & Rodriquez, 1991; US Congress, 1991). The threats to their health can, however, be addressed, treated, or prevented through provision and consistent use of comprehensive primary care services oriented towards prevention and empowerment. What then can primary care providers do to improve services to the most vulnerable groups of young people? The literature shows that adolescent providers are investigating a number of approaches with the goal of bettering health services for youth. These include advocating for the inclusion of adolescents in a national agenda for health reform (English, 1993; Hein, 1993) and developing peer-centered models for outreach, support, training, and health education (Rosenfeld, Shalwitz, & Sasser, 1993). Several studies have been done in which youth themselves have been asked about how to improve adolescent
152
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ARTICLE
10 Number
4
TABLE 1 Females
11 9
Males Age Range (yr) 13-21, Openly
lesbian
Openly Openly
gay heterosexual
average
16.8 2 5 13
Race/ethnic&y
African-American
12
Latino/Latina
4
Caucasian
3
Native
1
American
health care services (Berenson & Wiemann, 1993; Lena et al., 1993; Marks, Malizio, Hoch, Brody, & Risher, 1983; Resnick, Blum, &
adolescent experiences, opinions, and preferences about primary care.
Hedin, 1980). Cheng and her colleagues (1993) surveyed high school students and found that many of them report that they would not seek health services because they were concerned about issues of confidentiality. Winter and Brekenmaker (1991), in looking at adolescent use of family planning services, found that young people who received youth-specific services used their contraceptive method more consistently and longer than those receiving general family planning services. Few stud-
et al.
ies, however, have used a qualitative approach to assess adoIescent attitudes and preferences about their personal primary care experiences. This focus group project was a pilot inquiry using qualitative methods to explore a range of adolescent experiences, opinions, and preferences about primary care. It was completed as part of the first 6 months of a Federal grant from Special Projects of National Significance, Health Resources and Services Administration to help guide the development and coordination of innovative services for HIV-positive and at-risk youth in Boston. The objectives of the focus group project were (a) to gain a better understanding of specific youth experiences (positive and negative) with adolescent primary care providers and health care settings, (b) to gain an understanding of the special needs of youth that would improve their experiences in seeking and receiving primary care services, and (c) to solicit youth input and suggestions regarding how to design and implement youth-specific health services that are maximally accessible, sensitive, and responsive to youth needs.
METHODS Sample Population Four focus groups were conducted with a total of 20 urban adolescents between April 1994 and June 1994. Participants were recruited through existing peer leadership groups that meet regularly at local health centers or after-school programs. The demographics of the total group were diverse in terms of race, sex, and sexual orientation (Table 1). Participants were drawn from the eight member agencies that make up the Boston HAPPENS Program collaboration. The eight include Children’s Hospital, Boston City Hospital, New England Medical Center, Dimock Community Health
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Center, Bridge Over Troubled Waters, Justice Resource Institute, Roxbury Comprehensive Community Health Center, and Martha Eliot Health Center.
The focus group model was chosen because as a qualitative method it allowed for relatively extensive yet pointed discussion and exchange. An “Exploratory” approach to the focus group project, as described by Becker and her colleagues (1992), was used. This approach provides baseline data about the experiences, attitudes, and opinions of the target group and helps to begin to generate some hypotheses, although they are not necessarily generalizable. In this approach interaction between individual group members is less important than comments and contributions from each group member in response to most, if not all, questions posed (Becker et al., 1992). However, adolescents often engage well with each other about a topic in addition to directing their comments to the facilitator. The underlying premise of using a focus group model was that young people themselves are the best informants about their experiences are best equipped to make suggestions for improving primary care services for youth (Folch-Lyon & Trost, 1981r. A qualitative inquiry method such as the focus group was especially conducive to generating discussion and critique of services that can be difficult to access and negotiate, can be frightening, and involve youth disclosure of very personal, private information. As a nonjudgmental forum the focus group was one of the least threatening environments in which young people could openly discuss their experiences, express opinions, and make suggestions. Although qualitative information could have been obtained through one-on-one interviews, focus groups were relatively cost- and time-effective and allowed
OF PEDIATRIC
1. Imagine
that you wake
up tomorrow
you go for health care? How
and you have a chronic
would
you get there? Would
illness. Where
would
you bring anyone
with you?
If so, who?
Model of Inquiry
JOURNAL
BOX 1 FOCUS GROUP QUESTIONS
HEALTH
CARE
2. Who
would
3. What
are the qualities
you talk to about
4. Is the gender
of your health
5. Is the race/culture 6. Should 7. Does 8. Imagine
10. What
provider
important
provider
and service
providers).
care provider?
to you? Discuss.
important
speak the same first language
to you? Discuss. as you? How
do you feel about
Discuss.
it matter
to you if your provider
now that your partner
you do? Where 9. What
personal
like to have in a health
of your health
the provider
interpreters?
your illness? (includes
you would
would
is gay or straight?
is diagnosed
Discuss.
with an STD and tells you.What
would
you go for care?
has been your best experience has been your worst
1 I. Please tell me whether
since age 12 with
experience
a health
care provider?
since age 12 with a health care provider?
you feel comfortable
seeking
health care in the following
places: Hospital
clinic...why
or why not?
Neighborhood
health center...
Private
office...why
doctor’s
Large group
practice
why or why not? or why not?
or HMO...why
or why not?
12. What
are the things that make you want to go back to the same provider?
13. What
are some of the reasons
you would
for access to a greater number of youth. In addition, it is the hope of the Boston HAPPENS Program that the focus group sessions were affirming for participants because they were recognized as consumers and were given a unique opportunity to critique vital services about which their opinions are rarely solicited. Participants were asked to answer 13 questions related to their experiences and preferences regarding primary care (Box 1). At the start of each focus group it was explained that each participant had the right to refuse to answer any question at any time during this session. The participants were told that there were no right or wrong answers to the questions, and they were assured of confidentiality for the duration of the focus group project and any written reports that may ensue as a result of the project. At the end of each group participants were given a business card for the nurse at Children’s Hospital in the
not go back?
event they had further questions or wanted to talk with a provider in a one-to-one setting. Each l- to 1 ‘/z-hour group was made up of three to seven young people and was conducted by a facilitator (an experienced focus group consultant) and a recorder/observer (a staff person from Children’s Hospital). Once participants’ verbal permission had been granted and confidentiality was assured, all comments were recorded in writing. This was considered part of the consumer opinion of the Boston HAPPENS Program and was not considered as involving Human Subjects by our Human Investigation Committee. Snacks and drinks were provided for the youth, and at the conclusion of each group participants received a stipend of $10.00 for their time and contribution. Data Analysis The members of the project team have attempted to include a repre-
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53
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BOX 2 SUMMARY OF FACTORS CONTRIBUTING AND NEGATIVE PRIMARY CARE EXPERIENCES Factors
contributing
Receiving
to positive
care from
friendly,
youth
a provider
and has a gentle
experiences
who is competent,
relaxed,
care from
a provider
who will maintain
Receiving
care from
a provider
who
and lay terminology,
Receiving
care from
caring,
understanding,
manner.
Receiving language
TO POSITIVE
confidentiality.
is a good listener,
and communicates
a provider
who
answers
questions
using clear
very honestly.
is a good teacher
(i.e., provides
good patient
education). Seeing a provider
who
Seeing a provider
who explains
Seeing a provider
who talks female
Going
to a provider
who
Knowing
that a parent
Coming
out to a doctor
and demonstrate Having
access
Experiencing Factors
is not rushed
invites
as gay or lesbian
to health
care through waiting
to negative
youth
Seeing a provider
who is rough,
Receiving
care from a provider
health
Receiving
a pelvic
exam from
when
long, tiring waiting
as “not good enough”
Having
a lack of information
Losing
access
Having
to wear johnnies.
to a known
Volume
clinic
4
respond
the insurance
of a parent.
supportively
time at a clinic. experiences who does not explain without
preference
periods
before
if uninsured,
about where
that was gloomy,
10 Number
the doctor
by gay youth.
procedures,
explaining provider
does not use
them. each time.
is for a female. being seen by providers. of color,
or non-English-speaking.
to go for free care.
site due to Medicaid
prohibition.
drawn,
dim, or dirty.
sentative range of youth comments and experiences and to report trends in responses without generalizing inappropriately or drawing false conclusions. Group discussions were observed and transcribed verbatim by a youth-service provider from Children’s Hospital. Units of analysis were statements reflecting experiences with primary care providers /systems and statements reflecting preferences regarding primary care providers/ systems. These statements were highlighted and inductively grouped into similar categories. Both the focus group consultant and the children’s Hospital provider were pre-
I.54
exam.
the exam.
a teen to the clinic.
of issues faced
more than two times to have blood
a clinic
step of a pelvic
to stay during
a new and unknown
a male doctor
Being treated
Being stuck
every
and having
treatments
Experiencing
Visiting
through
to be stressed. them.
mean, or rushed.
and who prescribes
Being assigned
patients
doing
does not have to accompany
a “reasonable”
lay terms,
before
boyfriendslgififriends
an understanding
contributing
and does not appear
procedures
sent at the focus group sessions; they reviewed the data, came to agreement on its interpretation, and together identified categories. To ensure consistency the team of six authors carefully checked that data had been placed in appropriate categories, thus allowing for a systematic identification of trends. As a pilot project it is hoped that this inquiry will stimulate more indepth qualitative research into these questions.
RESULTS/DISCUSSION Although participants in the focus groups were initially unsure of their task, they became actively engaged
et al.
in the process once they understood their role. Nearly all the youth had something to say about every question, and the comments of one youth often triggered another to share additional thoughts or recollections. Participation was enthusiastic, and the youth seemed to answer questions with sincerity, honesty, and integrity. The youth had numerous experiences to share and had strong opinions on a number of issues such as extreme reluctance to use interpreters, stating a general preference to see female providers (most had seen women providers since birth) and sharing overall willingness to see a provider of any race or ethnicity as long as the provider was gentle, nonjudgmental, and competent (Box 2). Focus Contributing Experiences
to Positive
Focus group participants were asked to describe the qualities that they would like to have in a health care provider and the kinds of things that would make them want to return or not return to see the same provider. Focus group participants were also asked to discuss their best and worst experiences with a health care provider since the age of 12 years. Unanimously, the competence, manner, and approach of the health care provider were identified as factors most important to focus group participants in seeking, receiving, and returning for care. Confidentiality, communication style, continuity of care, medical competence, availability, and openness about sexual orientation (to gay and lesbian youth) were also important factors leading to a positive experience with primary care providers. I like my doctor because she is just
somebody who sits there and listens to your problems. 1 just want someone who knows what they’re doing. As long as they know what they’re doing, then ifs cool.
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Rosenfeld
My doctor is just herself: She don’t do what some of them old doctors say and d0.
I’d sit home with a 103 fever if I couldn’t seemy doctor. If they don’t know you, I have to explain my whole history. I want to have a doctor who knows what teens are going through. I like (my nurse practitioner) because he talks to you like afriend. I would go back if the doctor had a good attitude. I want to go to someoneI trust. If they trust me, I71 trust them. And although health care providers have been carrying beepers for years, the fact that they are now a symbol of status in urban youth culture contributed to this adolescent’s positive feelings towards her provider. My doctor is cool. I’ve got her beeper number. Positive Experiences of Youth With Health Care Providers Participants were asked, “What has been your best experience since age 12 with a health care provider?” All but one of the focus group participants were able to identify at least one positive experience related to receiving primary care. In general, they recounted stories in which providers were patient, understanding, and reassuring in a situation that was frightening or new. Many of the gay and lesbian focus group participants told anecdotes about positive provider responses to having come out as gay, lesbian, or bisexual during a primary care visit. When 1 was getting my first pelvic exam they were nice and made me feel comfortable. They told me everything. Knowing that you can go by yourself and that your mother doesn‘t have to come in with you. Knowing that it’s just between you and your doctor. That? what made it the bestfor me. When I was af?eshman in high school I got a physical and was cleared to play football.
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HEALTH
CARE
When I came out to the doctor and he came out to me. That was so positive. He helped me a lot. He referred me to a gay therapist andfamily therapy, and he also told me where I could get tested (for HIV). When I got a physical and went to McDonalds with a voucher from my doctor and we went together. When I had my first pelvic exam she talked me through it. She explained as she went along. I was real tense but the doctor helped. I wouldn’t know how to explain it to you.
experiencle ‘s~inceage 12 with a health care provider?”
Factors Contributing Experiences
to Negative
Factors contributing to negative experiences were, as anticipated, the opposite of the positive factors described previously. Participants expressed dissatisfaction with providers who are rough or rushed or who have ineffective communication styles, for example, do not explain procedures, do not use lay terms, prescribe treatments without explaining them. Participants’ experiences were also affected by long waiting periods, lack of continuity of care, and being assigned a male provider when preference was for a female. Some youth spoke about boundary issues such as a provider not fully closing a door, or lifting a sheet without indicating they were about to do so. Some youth complained about having to wear johnnies, saying that they were “sterile” (I. e., cold and impersonal) and did not cover them fully.
et al.
A number of participants described experiences in which they lost access to a known clinic site because of a Medicaid prohibition, or because a family member had lost his or her health insurance. One member said that he did not even know where to get free, youth-specific primary care in Boston. Several participants also recounted that on occasion they had been treated as if they were “less than” or “not good enough” because they were youth of color and spoke English as a second language. Some further comments from youth included the following. Every 6 months you need to have a pap smear. Who wants a d@erent person looking up in you ? I had a man doctor and he was touching me. I stood up. I was used to a woman doctor. That was the first time I had a man. 1 wouldn’t go back if the doctor had a bad attitude, like she didn’t want to see me. I wouldn’t go back if the doctor talked like a computer. I wouldn’t go backif me and the doctor didn’t get along. I wouldn’t go back if she was impersonal. 1 wouldn’t go back if the people at the ftont deskwere being rude. I wouldn’t go back if I had to wait too long. Negative Experiences With Health Care Providers Participants were asked, “What has been your worst experience since age 12 with a health care provider?” and all were able to recount stories in response to this question. Most negative experiences in primary care settings were related to poor interactions with providers, assistants, or receptionists, as referenced previously. With a less than gentle approach, speaking in medical rather than lay terminology, and lacking awareness about the issues faced by gay and lesbian youth emerged as themes.
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BOX 3 SUMMARY OFYOUTH OPINIONS AND PREFERENCES REGARDING PRIMARY CARE Most participants At a neighborhood Either alone,
reported
a preference
health
center
with a close and trusted
From a female
provider
regardless
From an openly
heterosexual
From an openly
gay provider,
From a provider
who speaks
whether
the provider
for seeking
or ambulatory friend,or
of gender
provider,
or receiving
care
care teen clinic some with or sexual
if heterosexual;
mother
if condition
was serious
orientation or from
a closeted
gay provider
if gay English clearly
is speaking
and can be easily understood
in the youth’
s first language;
regardless
of
with no interpreter
involved.
When 1 was 13 I went to (an HMO). They told me I was anemic. They wanted to give me a pill and wanted to give me a pregnancy test. They did not explain “anemic.” The word was so big I didn’t understand. I was not sexually active. 1had to wait longer whepzI didn’t have insurance. They treat you like you’re not good enough to get health care. Once when I was feeling suicidal my doctor tried for 3 hours to guess the reason. I needed to talk about my sexuality but he never asked.He sent me to a hospital and I wanted a woman or a gay person to talk to... But it took days before Igot to seesomeone who was cool about sexual prefeuazce.The doctors just made the situation worse and they couldn’t understand why it was important. It was a horrible experience. They always assume that patients are straight. My worst was when I went to a mean dental assistant. She was rough. She was pregnant and that hard stomach rubbed on me a lot. When a lady gave me a needle shekept moving it and had to do it over. Shehad an attitude problem. (Where I was) you have to wait and sign forms. They make you wait longer if you don’t speakEnglish. Opinions Regarding
and Preferences Primary Care
of Youth
All of the focus group participants had opinions and preferences about the topics covered. In general, the trends in responses reflect a prefer-
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ence for what is known and familiar. This may be because seeking health services can provoke feelings of fear and vulnerability (Box 3). Youth were asked to, “Imagine that you wake up tomorrow and you have a chronic illness. Where would you go for health care? How would you get there? Would you bring anyone with you? If so, who? Who would you talk to about your illness?” They responded. I‘dgo to my neighborhoodhealth center. I’d go to the gay health ten ter. I’d go to my regular doctor. 1 would get there by cab. I’D take the T (Boston subway systend. I‘d walk. I’d make somebody drive me. My brother would take me. Ifit was a major emergency,I’d call an ambulance. Even if it wasn’t severe, 1 wouldn’t take the bus, I’d take a cab. I’d go alone. (over 50% of respondents) IfI was scaredand needed support I’d bring my mom or bestfiiend. It depends on my illness. I’d have to think about who 1 trust. Myfirst idea is to call my cousin. 1 would talk to my mother. I would tell certainfiiends. 1 would talk to my bestfiiend. I would ty to find a specialist on the illness. If it was HIV, I would talk to my mother and my girlfviend. (lesbian youth).
1 would keep it in my family. 1 would only talk to my cousin. I could only tell my family what was happening because if1 told myfviends and it was personal, it would end my friendships. rf it was HIV I’d tell my parents afte a while. 1 would wait until 1feel comfortable. 1 don’t tell nobody what I do...Ifl was dying 1 wouldn’t tell anybody. When participants were asked, “Is the gender of your health provider important to you?” they responded, *‘Yes.” All female participants in the groups preferred to see a female provider. All but one of the heterosexual male members also preferred to see a female. Almost all participants had seen female providers since birth and expressed comfort and familiarity with them. It depends on what it’s for. For eyes ears or dentist it doesn’t matter. For a physical it has to be afemale. 1 went crazy when a man doctor wan ted to give me a physical. I refused and got a woman doctor. When I was young 1had a man doctor. But since 1got my period 1 have to have a woman. I’m concerned about male doctors molestingfemales. As a gay male, I would prefer a gay male for urology. Otherwise a sympatheticfemale is OK. You can’t explain gay sexual health problems to a straight male. 1 would want somebody young, defynitely under 40. Youth were asked, “Is the race/culture of your health provider important to you?” They responded, “No.” (Unanimous among all youth.) It doesn’t matter. People are people as long as they are doing their job. As long as she knows what she’s doing and speaks good English so 1 can understand her. It would be cool to seea black doctor, but he doesn’t have to be. Youth were asked, “Should the provider speak the same first lan-
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guage as you? How do you feel about interpreters?” The topic of interpreters stirred strong emotions for participants. The responses conveyed the importance of trust, clarity of communication, and perhaps most important, the sanctity of confidentiality. It doesn’t matter as long as they speak good English (unanimous). It doesn’t matter becauseI speak both languages (Spanish and English). I’d like to see a doctor who spoke Spanish, but I don’t have to. When I had a urina y tract i+ction it hurt a lot. They treated mefine, but I couldn’t understand her accent. I would never have an interpreter. It would invade my privacy (unanimous). I don’t want another person to know my business. 1 would leave before I would have an interpreter in the room (unanimous). They (the interpreter) might be spying on you to find out some i?zformation. If a doctor is examining you and another person has to be there it is complicated and awkward. 1 want to know exactly what the doctor was saying. I don’t trust an interpreter won’t make a mistake in the translation. Youth had particularly strong responses and dynamic discussions when they were asked, “Does it matter to you if your provider is gay or straight? What if you found out they were gay?” (The latter question was posed to the heterosexually identified youth.) Whether the sexual orientation of their primary care provider was known or unknown (and it was almost exclusively not known), heterosexually identified youth expressed significant fear and bias against providers who may be perceived or rumored to be gay or lesbian. A lively and heated discussion typically took place among focus group participants in which one member would question why sexual orientation mattered if a provider was competent, while remaining members insisted that they would fear molestation or inappro-
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priate behavior on the part of a gay provider. It was interesting that focus group participants reported no fear of inappropriate behavior on the part of heterosexual providers, although they overwhelmingly reported wanting to see women providers, and one youth did say that she feared a male provider might molest her. The trend among heterosexually identified youth was to state that they would not want to know whether their provider was gay or lesbian and to report that if they did learn such information, they would be inclined to request a different provider regardless of the relationship they had established with the current one. Given the pervasiveness of homophobia and misinformation about gays and lesbians in general, responses to this question probably reflect the perpetuation of widespread myths and lack of acceptance of homosexuality rather than an exceptionally high level of mistrust specifically on the part of youth. Of the gay and lesbian youth, all but two said, Yes, they would prefer a gay or lesbian provider. The heterosexually identified youth gave the following responses. I discriminate against gays. I’m afraid a woman might come on to me. 1 prefer not to know. if she tried to come on to me... 1 don’t know what I’d do. It matters because I would feel uncomfortable. I wouldn’t want anybody gay looking at me. If1 had a lesbian doctor it would concern me. To some girls it wouldn’t matter if they were lesbian or not. 1 probably had one before. If1 don’t know they’re gay it doesn’t matter. If Ifind out, I’m getting another doctor. I would say it to the doctor that 1don’t want them. I would go to someone else and askfor a transfer. 1 would tell the doctor I don’t feel comfortable. I would ask the doctor ifit is true if you are gay or lesbian.
When a gay person talks to you and knows you are straight, it’s like talking to a reg-ularperson. If I felt he did something wrong, I would bring it tip. If it’s a woman, I don’t care. Ifit’s a dude, I care, and I wouldn’t want him (reported by a heterosexually identified male). 1 can’t say unless I’m in that situation. The next question posed was, “Please tell me whether you feel comfortable seeking health care in the following places, and why: hospital clinic, neighborhood health center, private doctor’ s
k”
wheti.i&iy were asked, Woes it matter to you if your provider is gay or straight?”
office, large group practice, or health maintenance organization. Here, again, the trend among youth was to seek what was familiar and comfortable. hospital clinic: 19 yes/l no. It’s just as good as other places. You get better careand it’s lessimpersonal. They seelots ofpeople. They know me there and the adolescent clinic specializesin teens. At a hospital clinic you’re just a small person in a big place. Neighborhood health center: 17 yes/3 no Yes. Because it is smaller. You can grow up there and they know you. No. Becausethere/sno privacy. It depends on the neighborhood area.
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ORIGINAL ARTICLE
Private doctor’s office: 14 yes/4 no, and two youths did not know what a private doctor’s office was. It’s not as homey. It is just you and that person. It’s too isolated I would be more comfortable with people my own age around. Large group practice or health maintenance organization: 11 yes/9 no. They’re like a mini-hospital. They’re alrightfor mini stufl 1 like my doctor and she is at an HMO. There appeared to be a difference between trends that emerged from heterosexually identified youth
regards to morrogamy;2r@f, “one-night stands,” and betrayal.
compared with those from gay- and lesbian-identified youth when groups were asked, “Imagine now that your partner is diagnosed with an STD and tells you. What would you do? Where would you go for care?” The prominent themes for heterosexually identified youth were anger at their partner and concerns about loss of confidentiality. Responses by these participants were very emotionally charged and often included references to the use of violence. Whether these youth would actually behave in a violent way is unknown, and actual violence probably occurs less frequently than verbal threats of violence made directly to a partner
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or indirectly through conversations with friends. The gay- and lesbianidentified youth also expressed annoyance but were more focused on concern for the health of the partner and the youth himself or herself. No references were made to using violence. It was interesting that the gay and lesbian youth unanimously reported that they would go to their “normal” health care provider to be tested and treated for a sexually transmitted disease, whereas the heterosexually identified youth unanimously reported that they would not go to their “normal place,” for fear of parents or friends finding out that they had a sexually transmitted disease. Gay and lesbian youth may rely on each other for community and support and may be less likely to sever ties than they would be to distance temporarily and reconnect later. Because they also face losses of friends from HIV disease on a fairly regular basis, the gay and lesbian youth may feel less upset by exposure to a treatable sexually transmitted disease than their heterosexual counterparts. It is likely that there are also unique cultural norms in each of these youth subcultures with regards to monogamy, trust, “one-night stands,” and betrayal. Heterosexually identified youth responded with the following. I would be upset, yell, and ask questions. 1 would go crazy, yell, then get checked out and never go out with him again. I would tell him to “Go to hell.” I would be upset becausehe put me in danger. I would kill him. I would go get checked out at Children’s Hospital. Then I would ask her how she got it and smack her. 1 would definitely do something... maybe it would be physical. I would beat her down. She would never leave the house again. If 1 had no STD I would “ill” and “jet” (i. e., this adolescent male would possibly commit physical violence
against his female partner and would leave the relationship). I’m not afraid to die. I just don’t want to die hurting. I would not go to my normal place to get checked out so my parents would notfind out. I would go elsewhere to get it taken care of (unanimous). Gay- and lesbian-identified youth responded in the following manner. I would take care of him, have safesex, or abstain for a while. I would go with him to get treated. I would get medical carefor the person, get myself tested, and get preventative care. I might be annoyed about where she got it, but I would deal with it after she was cured. I would be pissed off but I would help him get it taken care of I would get treated in the same place I would go if I had a chronic illness (unanimous). Summary of Recommendations Based on the Focus Group Project Recommendations are divided into youth- and provider-specific categories. Youth-specific recommendations focus on strategies for enhancing youth information, comfort, and skill in accessing primary care services. Provider-specific recommendations offer strategies for enhancing training and education to improve primary care services for youth. Examples of youth-specific recommendations include developing creative materials by and for youth to increase information about where and how to accessprimary care services and what to expect in the process of seeking these services. The recommendations can be applied and expanded on by these youth. Provider-specific recommendations identify topics to emphasize in provider education such as enhanced communication and history-taking skills and developing skills for working with sexual minority youth.
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Rosenfeld
CONCLUSION In general, findings from the Boston HAPPENS Program focus group pilot project revealed that nearly all youth participants were able to recount both positive and negative primary care experiences. Participants spoke at length about factors that positively influence their experiences. These often included receiving care from a provider who is friendly, gentle, understanding, and has good communication skills. Participants also discussed factors that negatively influence their pri-
more sensiti&o”
the
ii
needs of youth including those in urban, suburban, and rural communities.
mary care experiences including receiving care from a provider who is rough, mean, rushed, or has poor communication skills. Participants also expressed strong preferences regarding sex and sexual orientation of providers but not for race or ethnicity, There were interesting differences between heterosexually identified youth and gay- and lesbian-identified youth in terms of their reported responses to having a partner with a sexually transmitted disease. The variance in responses may be due to differences between these two subcultures of urban adolescents.
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Looking at the collection of participant responses in a broader sense, it appears that an underlying theme for our youth was wanting to be respected. Through the youths’ examples of “best” and “worst” experiences and their references to factors positively and negatively affecting their care, the youths indicated over and over again that they wanted to be treated well. They wanted to be listened to, they wanted to have their problems taken seriously, and they wanted to be treated with the utmost dignity and respect. It was interesting that these needs are not unlike those of any self-respecting adult when she or he is seeking primary care services. However, in a society in which young people are rarely taken seriously, are often disrespected, and have no economic or political power, it makes sense that youths would desire a status they perceive to be equal to that of adults. This is especially crucial in a realm in which they feel they can exercise some limited sense of control...that is, in exercising control over their own physical bodies. There were a number of limitations of this pilot project. First, with a sample of only 20 youth and an “exploratory” approach, the results cannot be generalized to the larger population of urban adolescents. It should also be noted that participants were from youth leadership groups, which may or may not reflect different experiences and opinions than the average youth. However, the consistencies and repetition in trends of responses by focus group participants suggest that other youth may respond in similar ways. Second, although self-reporting about past experiences with primary care providers is likely to be fairly accurate, selfreporting about what a young person says she or he would do in a given situation may vary significantly from what the youth actual-
et al.
ly does in that situation. In this study this especially applies to the client leaving a health care provider if the patient learns that she or he is gay or older or stating that the client would physically assault a sexual partner, if that partner has a sexually transmitted disease. Nevertheless it is important for adolescent providers to educate themselves and their patients about the issues of homophobia and domestic violence. Last, we chose not to label participant comments (i.e., African American girl, gay white boy) so as not to compromise anonymity within our small sample. In a larger project it would be important to label comments according to their sources and to incorporate this race and sex identification into the analysis. This study should be used to generate hypothesis for further study. There are numerous areas to study further based on the results of this pilot. First, this particular survey should be done in different formats with larger and more diverse groups to clarify the types of primary care adolescents are most likely to access and use over time. A broader survey could focus very specifically on those issues raised to the fore in our study: questions related to sexual orientation, ethnicity, language of provider, and use of interpreters. It was in these areas that our population expressed the strongest preferences. Further study could clarify factors underlying these opinions and identify more specific ways in which primary care can be made more sensitive to the needs of youth including those in urban, suburban, and rural communities. For example, is the use of an interpreter unanimously rejected in all cases by every adolescent? Our hypothesis would be no, but there are likely to be some very critical factors for making use of interpreters successful with adoles-
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1996
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Rosenfeld et al.
ORIGINAL ARTICLE
cents. Further study would also help to formulate and fine-tune targeted questions to be used with larger, more diverse groups of adolescents in surveys or intervention studies. Such questions would in turn add to our knowledge base of primary care needs and preferences of broad populations of youth. This pilot inquiry is a first step in understanding the primary care experiences and preferences of urban adolescents, especially as these experiences and preferences relate to adolescent use of primary care. It is important to identify blatant barriers to care as described by adolescents and more subtle barriers that may influence young people’s decisions to seek or return for care. Further research should investigate the predictors of health care use by vulnerable youth such as the actual impact of provider demographics or health care use and types of services and sites accessed by these youth. Improved primary care services will increase the likelihood that youth will raise difficult and sensitive issues such as sexual orientation, depression, suicidal feelings, physical, emotional, or sexual abuse, struggles with drug and alcohol dependency or addiction, and the complexities, fears, and frustrations of integrating harm reduction into day-to-day life. Improved primary care services, that is, services in which youth are consistently treated with dignity, respect, and compassion, are likely to make a significant difference in the numbers of youth who do seek and return for care. Qualitative approaches should be used in adolescent health research to flesh out our understanding of existing problems and to take a closer look at the constellation of factors affecting adolescent health care use as perceived by young people themselves.
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The Boston HAPPENS Program would like to express our appreciation to the young people who agreed to participate in this focus project. Their honesty and input will help improve service delivery to youth throughout the city. The Boston HAPPENS Program would also like to thank James Collins of TECLY (Tobacco Education for Gay and Lesbian Youth) and Jeremy Cattani of AIDS Action Committee and Sterling Stowell of PROUD, Inc. for helping to coordinate youth scheduling and participation in focus groups. In addition, we thank Robin Cuilfoy for her assistance in preparation of materials and the manuscript.
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