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Access to health care among Australian adolescents young people's perspectives and their sociodemographic distribution
JOURNAL OF ADOLESCENT HEALTH 2004;34:97–103
INTERNATIONAL HEALTH BRIEF
Access to Health Care Among Australian Adolescents Young People’s Perspectives and Their Sociodemographic Distribution MICHAEL L. BOOTH, Ph.D., DIANA BERNARD, M.P.H., SUSAN QUINE, M.P.H., Ph.D., MELISSA S. KANG, M.D. M.C.H., TIM USHERWOOD, M.D., B.S., GARTH ALPERSTEIN, M.D., M.P.H., AND DAVID L. BENNETT, M.B.B.S.
Purpose: To identify the health concerns for which adolescent residents in New South Wales, Australia, do not receive health care, and the associated factors, including their sociodemographic distribution. Methods: Purposive sampling was used to recruit school students who were stratified by gender and age (12–14, 14 –16 and 16 –17 years), from schools stratified by socioeconomic status and urban/rural location. Out-ofschool young people were recruited through youth health services. Qualitative methods were used to collect and analyze data. Results: Eighty-one focus groups were conducted. Most young people defined health solely in terms of their physical well-being, but still identified a broad range of situations, conditions, or behaviors which they believed might affect their health. One-third of females and two-thirds of males said they would not seek help for their health concerns, and when they did, were most likely to seek help from family, friends, or others they trusted. When professional help was sought, young people again preferred someone they knew and trusted. The three groups of barriers to accessing health care were: concerns about confidentiality, knowledge of services From the Discipline of Paediatrics and Child Health, University of Sydney at The Children’s Hospital at Westmead (M.L.B.), the NSW Centre for the Advancement of Adolescent Health, The Children’s Hospital at Westmead (D.B., M.S.K., D.L.B), the Department of General Practice, University of Sydney at Westmead Hospital (T.U.), the School of Public Health, University of Sydney (S.Q.), and the Central Sydney Area Health Service (G.A.), Sydney, New South Wales, Australia. Address correspondence to: Michael L. Booth, Ph.D., Discipline of Paediatrics and Child Health, University of Sydney at The Children’s Hospital at Westmead, Locked Bag 4001, Westmead NSW 2145, Australia. E-mail: [email protected] Manuscript accepted June 5, 2003. © Society for Adolescent Medicine, 2004 Published by Elsevier Inc., 360 Park Avenue South, New York, NY 10010
and discomfort in disclosing health concerns, and accessibility and characteristics of services. Factors related to use of health care services were associated with age, gender, and location, but rarely with socioeconomic status. Conclusions: The majority of these young people in New South Wales (particularly males) do not seek health care despite identifying a broad range of issues that affect their health. © Society for Adolescent Medicine, 2004
KEY WORDS:
Adolescents Access Gender differences Health care Health services Homeless youth School students Australia
Neither cost nor other barriers should prevent any population group from having timely access to care whenever they have a significant health concern or from receiving appropriate advice and opportunities to maximize their health when they are well. There are many anecdotal reports that a substantial proportion of young Australians, when they have significant health concerns, do not seek health care, or seek, but do not receive, care that satisfactorily allays their concerns. 1054-139X/04/$–see front matter doi:10.1016/j.jadohealth.2003.06.011
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The issue of access has been one of major concern to the practice of adolescent medicine since its inception, and was studied extensively in the 1960s and 1970s. The social context of health care has altered greatly since then. There have been many political, economic and cultural changes, and an explosion in the availability of information and in modes of communication. These changes are likely to affect how and why young people access health care. Access to health care services for adolescents has been extensively studied in the U.S. for the past decade and a half. Even where knowledge of services exist, major barriers to access include: fear of confidentiality, embarrassment, and cost, in particular, being uninsured [1–5]. Certain subgroups are less likely to access health care. Risk factors for not seeking or not receiving care include being uninsured, older and male, living in a rural setting, and being from some minority ethnic groups [1– 6]. Barriers to access for homeless youth also include lack of knowledge of services, fears about confidentiality, and being uninsured [7]. By contrast, the United Kingdom’s nationalized health system would possibly make cost a negligible issue with regard to access. British research into barriers to access for adolescents suggests that the individual adolescent’s personal concerns about embarrassment and confidentiality to be major reasons for not seeking help [8,9]. Many British adolescents have also reported that they do not seek help even when they have a serious health concern, particularly a sexual health concern [10]. A recent study of French adolescents found that, with regard to physical health problems, young people preferred to self-treat or seek the assistance of family, but were prepared to access a health professional if the problem were serious or persistent. With regard to emotional/relationship problems, young people were reluctant to seek professional help, citing embarrassment, shame, and a sense of futility [11]. Overall, the international literature suggests that some of the barriers to accessing health care experienced by adolescents are universal (e.g., embarrassment, shame, fear of lack of confidentiality, particularly with regard to emotional, mental, and sexual health problems). It also appears that other barriers are peculiar to each health care service system. There are very few investigations into the reasons young Australians do not seek or receive adequate help when they have a health concern. The Youth Policy Development Council [12] consulted with 3000 young people about their health concerns and identified hours of operation, lack of transport, cost,
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inappropriate waiting rooms, and treatment by receptionists as concerns about confidentiality and lack of knowledge of available services as significant barriers to accessing care. The Victorian Youth Advocacy Network [13] surveyed their peers (aged 12–25 years) with regard to access to community health centers and identified a very broad range of barriers, but did not explore their sociodemographic distribution. The study reported here is the first of a planned multiphased program of research and development (The Access Study) intended to discover factors which influence access to primary health care among adolescents and to develop and implement effective responses based on sound evidence. Phase 1 is a needs assessment which focused on young people, family practitioners (FPs), community health center (CHC) staff, youth health service staff, and youth workers. In this paper the main findings of Phase 1 for young people are described.
Methods Design Quota sampling by required characteristics was used to select the high schools (see procedure below) from which school students were recruited. Purposive sampling, a form of nonprobability sampling [14,15], was used to recruit high school students and also out-of-school young people. This study was approved by the Children’s Hospital at Westmead Human Research Ethics Committee, the NSW Department of Education and Training, and the Human Ethics Committees of the Area Health Services in which health staff were interviewed.
Sample Selection Two groups of adolescents were approached to participate: those who regularly attended private or government-run schools and “out-of-school” young people; those who did not attend school, attended sporadically, or who had left mainstream education and attended alternative education programs. Inschool adolescents were stratified by gender, age, urban/rural place of residence, and socioeconomic status (SES) (Table 1). New South Wales (NSW) is comprised of 17 Area Health Services (AHS), of which five metropolitan, one regional, one coastal, two inland rural, and one remote rural AHS were selected. These AHS were selected because they represented most aspects of the
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Table 1. Number of Focus Groups in Each Stratum of the In-school Sample by Age and Gender, and by Location and Socioeconomic Statusa of School Attended Boys Age (yrs) School Socioeconomic status (SES) Urban lower SES Urban middle SES Urban higher SES Geographic locationb Regional Rural a b
Girls Age (yrs)
12–14
14 –16
16 –17
12–14
14 –16
16 –17
2 3 3
4 1 3
4 3 2
4 3 4
2 5 4
3 3 3
1 2
0 3
1 3
0 4
1 6
0 4
Applied to urban areas only and based on ABS SEIFA index [16] by postal code. “Regional” refers to towns with populations in excess of 250,000 and “rural” refers to smaller towns or villages.
Sydney metropolitan area and rural/regional NSW (including the full range of SES). In addition, some AHS were selected because there were few adolescent health initiatives under way and others were chosen because a great deal of innovative activity was being undertaken. All Youth Health Services located in the participating AHS were approached to participate in the study. Out-of-school young people were recruited through the youth health services (see below). Every AHS in NSW had previously nominated at least one community health center (CHC) on the basis of its history of being (or interested in becoming) a youth-friendly service. Each of the selected CHC were located on a street map of metropolitan Sydney and all of the high schools within a radius of 2–3 km were identified and approached to participate in the study. All NSW postcodes were rankordered on the basis of the Australian Bureau of Statistics SEIFA (Socio-Economic Indexes for Areas) Index [16] and classified into tertiles. Each school that agreed to participate in the study was identified as being in the low, medium or high tertile of SES on the basis of its postal code and the school recruitment process was continued until sufficient schools had been recruited to allow us to conduct at least three focus group discussions for each cell represented in Table 1. Recruitment In each of the participating schools, the liaison teacher was asked to select an “average” group of 10 boys or an “average” group of 10 girls from Year 7 or Year 8 (12–14-year-olds), Year 9 or Year 10 (14 –16year-olds) and Year 11 (16 –17-year-olds). As some of the issues raised may be gender-sensitive, and to identify any gender differences, students were inter-
viewed in single gender groups. The liaison teachers were asked to avoid selecting the most articulate or outspoken students, but to identify students who were typical of their peers. Liaison teachers were also asked to select a group of students who were comfortable in a group situation (not too disruptive) to facilitate open discussion of some potentially intimate matters. Only those who provided informed parental consent participated. All focus groups were conducted by one of the authors (D. Bernard) and most ran for about 50 minutes. Food and drink were not provided for in-school young people because they were already familiar with each other, but refreshments were provided for out-of-school young people and service providers. Different approaches were taken to recruiting out-of-school young people. Some were directly invited to participate and others were recruited through in-house advertising. Out-of-school young people were paid for their participation.
Identification of Focus Group Discussion Prompts Issues for discussion with young people were identified in four ways: (a) the published literature; (b) issues identified by the chief investigators and members of the Project’s Advisory Group based on their experiences of working with young people; (c) the results of several pilot focus group discussions; and (d) issues which arose during the course of the focus group discussions and interviews.
Data Analysis As this was an exploratory study, a qualitative approach was adopted [17]. Focus groups were used as an appropriate method to obtain the range of
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views held by young people on the study topic [18]. Given the range of sociodemographic characteristics (age, gender, SES, urban/rural location) by which the sample was stratified, it was necessary to conduct a large number of focus groups to obtain sufficient numbers for analysis within each cell (see Table 1). Eighty-one focus groups were conducted in 28 schools across NSW from September 2001 to March 2002. Thirty-five groups of boys and 46 groups of girls were interviewed. Although the majority of focus groups were conducted in urban areas (56 groups), there was strong representation of rural areas (22 groups) and some representation of regional areas (3 groups). All focus group sessions were tape-recorded and transcribed. Responses to the issues raised by the group facilitator were analyzed for themes. However, given the very large number of focus groups, only 51 were analyzed using a computer software package known as NUD*IST 4 [19]. The transcripts of the remaining 30 focus groups were searched for any relevant information not already identified.
Results Definitions of Health Most young people defined “health” in terms of physical health. Definitions included “fitness, food, your physical state, hygiene, keeping your body in good condition…” In response to probing by the facilitator, some young people accepted the relevance of sexual and mental health being included. Those who included aspects of health other than physical well-being were all in Year 11 and of these, females were more likely to offer a broader definition of health than males. Definitions of health did not vary with SES or with urban/rural place of residence. Out-of-school young people (who tended to be in the 15–17 year age group) tended to have broader definitions of health, including physical, emotional, social, and psychological aspects of health.
Health Issues Despite an apparently narrow definition of health, young people identified a broad range of situations or conditions which they believed affect their health. These included: mental health issues, social issues (such as lack of recreational activities), sexual health issues, drug and alcohol issues, stress or pressure, diet and body image, bullying, safety (including on
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the street and at home), relationships, employment and educational opportunities, homelessness, poor self-esteem, perceived teacher’s sexism (i.e., female teachers toward male students), income, and transport. The issues varied in their importance (the frequency with which a theme was mentioned or affirmed) depending on the age, gender, and urban/ rural location of the respondents and whether they were in-school or out-of-school young people. SES appeared to be unrelated to the issues identified except for a slightly higher concern about street safety among younger females in lower SES areas and among out-of-school young people. Preferred Sources of Help Young people were asked from whom they most frequently sought help when they had a health concern. Approximately one-half of all young people, particularly males, did not seek help from anyone at all. If they discussed these issues, the majority discussed them with those with whom they were close. Two-thirds of females and one-third of males identified the following people as sources of advice or support when they had a health concern, in descending order of importance: friends, parents (especially mothers), siblings, friends of the opposite gender (mostly males approaching females), “People you really trust,” other family members (e.g., cousins), no one (1/3 females, 2/3 males), priest, responsible community elder (certain ethnic groups), and youth leader. Only a small number of young people considered seeking help from a service provider. Those who did had usually come to know a particular service provider by coincidence and had formed a positive relationship with him/her. Because young people viewed health primarily in physical terms (particularly males) they accepted general practitioners, medical centers, and emergency departments of local hospitals as appropriate for dealing with these concerns. A small number of older girls also attended FPs, medical centers, or women’s health centers for contraception and sexual health information. However, young people were generally unaware that FPs might be trained in skills such as counseling, and, when prompted, were dubious about the possibility of FPs having such skills. Few young people had ever heard of community health centers and thought they were places where “old ladies go to knit.” Females sought help more than males. Younger adolescents (Year 7) were more inclined to seek help from their parents, whereas older adolescents (Years
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10 and 11) were more inclined to seek help from their friends. A small proportion of older females (Year 11) had good relationships with, and sought help from, their mothers, but these were exceptions to the rule. There were no apparent urban/rural or SES differentials in preferred sources of help. Out-ofschool young people were just as reluctant to seek help as in-school young people and gave the same reasons with some additional reasons specific to their circumstances (e.g., “. . . I think if you are a drug user, they don’t want to help you, they see you as the lowest”). Use of Service Providers When young people did seek help from a service provider, they approached the following, in descending order of importance: FPs they knew and trusted, school counselors, youth health/youth services (primarily out-of-school young people), Centrelink (a federal government welfare service; primarily outof-school young people), FPs that they did not know (on purpose, they found it easier to talk to someone they did not know about intimate concerns and believed that the FP would not be able to inform their parents of the consultation), counselors not based in schools, other school staff (e.g., a trusted teacher), community telephone counseling services, women’s health services, and adolescent mental health services. Again, females were slightly more likely to seek help and younger adolescents (especially Year 7 males) were more likely to seek help from school counselors. Other services young people were aware of included: the police, refuges, safety houses, Police Citizens Youth Centres (PCYC), youth centers (drop in), youth groups (usually church run), the Reach Out website, Juvenile Justice, Job Placement Education and Training Program (JPET), the Salvation Army, Kids Helpline, the Department of Family and Community Services, psychologists, local council services, and, rarely, a community health center. Knowledge of services and what they provided was limited among all young people across SES strata, gender, age and rural/urban settings. Older adolescents (Year 11) had slightly greater knowledge of services, particularly regarding contraception. Younger adolescents (Year 7/8) generally had very limited knowledge of services and believed that their parents would take them somewhere if they required help (“…I’d rather talk to someone like my Mum…”). There were substantial gender differences with regard to accessing services, with females re-
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porting greater knowledge of, and willingness to access, services. Girls, but not boys, made comments such as “…if I was trying to work out stuff, I would go…”. The only SES differences were that young people attending private schools suggested that their parents might access private counselors if they were needed. They were, however, no more inclined to attend than other young people: “…you wouldn’t go though, you would be ostracized…”. Out-of-school young people were far more likely to be aware of available services, particularly youth health services. Nevertheless, they reported that they did not access services unless they were in crisis or had heard “…positive word on the street…” about the service. Out-of-school young people often used a service for the first time because they were forced to (e.g., they were sent to a youth service by Juvenile Justice and then formed a positive relationship with the service provider). They greatly valued the medical service provided in youth health services. Although young people knew little about services, they stated that they would not use them even if they did know more about them: “…you go to someone you know and trust and they know you.” Consequently, access was generally accidental on the first occasion. That is, young people attended a GP for a physical health issue and formed a good relationship and knowledge of what was provided, or because of active publicity by a service (e.g., FP/CHC services in schools). As one student confirmed “…I’ve known him for a while and he is really good to talk to…”. Barriers to Accessing Services The following were mentioned by young people as barriers to accessing services, in descending order of importance: confidentiality (referred not just to service providers keeping issues confidential, but also in relation to being seen going to a service), embarrassment, feeling vulnerable/scared/stupid/ ashamed/embarrassed/too proud to admit having a problem, don’t know about service or what it offered, don’t think they need to, find it difficult to talk about their health concerns, no one would be able to relate to their concerns, service provider has a different background from out-of-school young people (they went to university and are perceived to have had a happy family life), cost/waiting lists (FPs only), services are not friendly, feel that they would be judged and criticized, wrong gender (usually mentioned by females), not manly to seek help, inadequate transport, believe that FPs were not trained or skilled in anything other than physical
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health, and inconvenient opening hours. The barriers reported by young people can be grouped into three factors. The first group relates to the perceptions or beliefs of young people that cause them a great deal of personal anxiety or concern about accessing services. The most important barrier is that confidentiality would not be kept, both in terms of service providers keeping disclosures confidential and being seen attending a service. The next most important related to personal embarrassment in being able to disclose their health concerns and their belief that they would not be understood, taken seriously or treated respectfully (“…they wouldn’t understand…they are too old and they would look down on you…”). The second factor included young people’s knowledge of services and when it is appropriate to attend. Many young people were not aware of the range of available services, nor of the range of skills that providers might have that could be relevant to their needs. The third key factor included structural factors: costs, accessibility, opening hours, and waiting times. The barriers to access were almost universal across the sociodemographic groups. An important addition was that girls resident in rural areas reported that very few female family practitioners were available. The consequences of this shortage of female FPs were that the waiting lists were two to three weeks long, the girls did not wish to “waste” the FP’s scarce time with concerns that were not serious, and services for which adolescents were not directly charged were rarely available, making cost a significant barrier for many.
Discussion Despite most young people restricting their stated definitions of health to physical well-being, most had broad perspectives on the factors which might affect their health. When young people had a significant health concern, a great many of them did not seek help and when they did, they were more likely to seek help from those with whom they were close rather than from health professionals. However, a study conducted among adolescents in England found that the person from whom help was sought depended on the nature of the health concern [20]. Family members were approached for help for minor ailments, but friends and siblings were approached for help with a relationship problem. Rosenthal and Smith demonstrated that for sensitive issues, such as
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sexually transmitted infections, there is a mismatch among young people’s preferred sources of health information (the mass media, friends), the perceived credibility of that source, and its use by young people [21]. They found that although health professionals might be perceived as the most credible sources of help, they are not accessed. Our study’s findings are congruent with those findings and have highlighted the need for a multifaceted response. Young people were not only frequently unaware of the range of services available from FPs, but expressed some skepticism that FPs could be so broadly skilled. Nevertheless, when young people did seek help, it tended to be from either school staff or family practitioners; confirming schools and family practice as key settings for the delivery of health care to young people. Strategies to improve access to services should begin to explore how schools and family practitioners could work together. There were three key groups of barriers to young people accessing health care. The first group included concerns about confidentiality, a finding common to several studies conducted in different countries [3,20]. Oppong-Odiseng and Heycock identified several factors which influenced concerns about confidentiality: proximity of the service provider to the adolescent’s local environment, previous experience, attendance with a parent, the relationship of the service provider with others (e.g., school staff, parents), legal obligations of the service provider, and severity of the condition [20]. In addition, young people expressed embarrassment and discomfort about disclosing their concerns. This group of findings is consistent with our current understanding about adolescent cognitive, psychological, emotional, and social development whereby self-consciousness, lack of experience within the health system, lack of maturity, and experience in negotiating relationships are all operating. The emphasis currently placed on teaching health professionals techniques for developing trusting relationships with adolescents reflects this understanding well. Assisting young people to feel more comfortable in disclosing their intimate concerns represents a challenge and is likely to take time and a variety of approaches. The second factor included inadequate knowledge of services that, we speculate, should be relatively simple to address. The third group of barriers included structural factors such as cost and accessibility (location and hours of opening). These barriers appeared to be far less salient for young people than those discussed above, but that may be a function of the fact that
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many young people rarely use services. If young people were to use services more frequently, structural service-related issues might come to feature more prominently. Potential solutions might include: modifications to the way the service functions, providing services at schools, and developing youthspecific services which may be stand-alone or integrated with other health or social services. In contrast to conventional wisdom, we did not find any clear associations among SES and definitions of health, health issues, sources of support for health concerns, or reported barriers to receiving health care. This is arguably the most important finding of the study as it is almost a truism among Australian health professionals that there is an inverse association between SES and access to health care. We did, however, find associations among age and gender and the study factors. Younger adolescents and girls were more prepared to seek help from someone when they had a health concern and girls expressed a greater willingness than boys to access services. A recent study in the United States also found that adolescent boys accessed health care services significantly less than girls of the same age [22]. Younger adolescents (aged 12–13 year) still relied on their parents for access to health care. It appears that those aged approximately 13–16 years, particularly boys, are least likely to access health care when they might benefit from it, and therefore efforts to improve access should focus, but not exclusively, on the needs and interests of this group. Our study has enriched our understanding of the health concerns of young people and their helpseeking behavior. It is crucial that health services do become more youth friendly and that young people and their support networks, such as family and friends, are informed and educated about these services and how to access them. For young people, the key to their use of health services is trust, and the path to connecting young people with health care services is providing appropriate opportunities for them to develop that trust. This study was funded by a grant from the NSW Health Department to the NSW Centre for the Advancement of Adolescent Health.
References 1. Zimmer-Gembeck M, Alexander T, Nystrom R. Adolescents report their need for and use of health care services. J Adolesc Health 1997;21:388 –99.
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2. Klein J, McNulty M, Flatau C. Adolescents’ access to care: Teenagers’ self-reported use of services and perceived access to confidential care. Arch Pediatr Adolesc Med 1998;152:676 – 82. 3. Ginsberg KR, Menapace AS, Slap GB. Factors affecting the decision to seek health care: The voice of adolescents. Pediatrics 1997;100:922–9. 4. Ford C, Bearman P, Moody J. Foregone health care among adolescents. JAMA Dec 1999;282:2227–34. 5. Klein J, Wilson K, McNulty M, et al. Access to medical care for adolescents: Results from the 1997 Commonwealth funded survey of the health of adolescent girls. J Adolesc Health 1999;25:120 –30. 6. Newacheck P, Brindis C, Cart C, et al. Adolescent health insurance coverage: Recent changes and access to care. Pediatrics 1999;104:195–202. 7. Society for Adolescent Health. Health and health needs of homeless and runaway youth. Position Paper. J Adolesc Health 1992;13:717–26. 8. Walker ZAK, Townsend J. The role of general practice in promoting teenage health: A review of the literature. Fam Pract 1999;16:164 –72. 9. Milne AC, Chesson R. Health services can be cool: Partnership with adolescents in primary care. Family Practice 2000;17: 305–8. 10. Jacobson LD, Mellanby AR, Donovan C, et al. Teenagers’ views on general practice consultations and other medical advice. Fam Pract 2000;17:156 –8. 11. Pommier J, Mouchtouris A, Billot L, et al. Self-reported determinants of health service use by French adolescents. Int J Adolesc Med Health 2001;13:115–29. 12. Youth Policy Development Council (YPDC). Health for Youth—Final Report: Policy and Strategies. Melbourne: YPDC, 1987. 13. Victorian Youth Advocacy Network (VYAN). Young People’s Reference Group Report: A Consultation with Young People on Their Health Needs in Relation to the Current Victorian Health Care System. Melbourne: VYAN, 1993. 14. Patton MQ. How to Use Qualitative Methods in Evaluation. Newbury Park, CA: Sage, 1987. 15. Quine S. Sampling in non-numerical research. In: Kerr C, Taylor R, Heard G (eds). Handbook of Public Health Methods. Sydney: McGraw Hill, 1998:539 –42. 16. Australian Bureau of Statistics. Information Paper: 1991 Census Socio-Economic Indices for Areas. ABS Cat. No. 2912.0., 1993. 17. Rich M, Ginsberg KR. The reason and rhyme of qualitative research: Why, when and how to use qualitative methods in the study of adolescent health. J Adolesc Health 1999;25:371–8. 18. Quine S. Focus groups. In: Kerr C, Taylor R, Heard G (eds). Handbook of Public Health Methods. Sydney: McGraw Hill, 1998:527–33. 19. Gahan C, Hannibal M. Doing Qualitative Research Using QSR NUD*IST. London: Sage, 1998. 20. Oppong-Odiseng ACK, Heycock EG. Adolescent health services–Through their eyes. Arch Dis Child 1997;77:115–9. 21. Rosenthal D, Smith A. Adolescents, sexually transmissible diseases, and health promotion: Information sources, preferences, and trust. Health Promotion J Aust 1995;5:38 –44. 22. Marcell AV, Klein JD, Fischer I, et al. Male adolescent use of health care services: Where are the boys? J Adolesc Health 2002;30:35–43.
INTERNATIONAL HEALTH BRIEF
Access to Health Care Among Australian Adolescents Young People’s Perspectives and Their Sociodemographic Distribution MICHAEL L. BOOTH, Ph.D., DIANA BERNARD, M.P.H., SUSAN QUINE, M.P.H., Ph.D., MELISSA S. KANG, M.D. M.C.H., TIM USHERWOOD, M.D., B.S., GARTH ALPERSTEIN, M.D., M.P.H., AND DAVID L. BENNETT, M.B.B.S.
Purpose: To identify the health concerns for which adolescent residents in New South Wales, Australia, do not receive health care, and the associated factors, including their sociodemographic distribution. Methods: Purposive sampling was used to recruit school students who were stratified by gender and age (12–14, 14 –16 and 16 –17 years), from schools stratified by socioeconomic status and urban/rural location. Out-ofschool young people were recruited through youth health services. Qualitative methods were used to collect and analyze data. Results: Eighty-one focus groups were conducted. Most young people defined health solely in terms of their physical well-being, but still identified a broad range of situations, conditions, or behaviors which they believed might affect their health. One-third of females and two-thirds of males said they would not seek help for their health concerns, and when they did, were most likely to seek help from family, friends, or others they trusted. When professional help was sought, young people again preferred someone they knew and trusted. The three groups of barriers to accessing health care were: concerns about confidentiality, knowledge of services From the Discipline of Paediatrics and Child Health, University of Sydney at The Children’s Hospital at Westmead (M.L.B.), the NSW Centre for the Advancement of Adolescent Health, The Children’s Hospital at Westmead (D.B., M.S.K., D.L.B), the Department of General Practice, University of Sydney at Westmead Hospital (T.U.), the School of Public Health, University of Sydney (S.Q.), and the Central Sydney Area Health Service (G.A.), Sydney, New South Wales, Australia. Address correspondence to: Michael L. Booth, Ph.D., Discipline of Paediatrics and Child Health, University of Sydney at The Children’s Hospital at Westmead, Locked Bag 4001, Westmead NSW 2145, Australia. E-mail: [email protected] Manuscript accepted June 5, 2003. © Society for Adolescent Medicine, 2004 Published by Elsevier Inc., 360 Park Avenue South, New York, NY 10010
and discomfort in disclosing health concerns, and accessibility and characteristics of services. Factors related to use of health care services were associated with age, gender, and location, but rarely with socioeconomic status. Conclusions: The majority of these young people in New South Wales (particularly males) do not seek health care despite identifying a broad range of issues that affect their health. © Society for Adolescent Medicine, 2004
KEY WORDS:
Adolescents Access Gender differences Health care Health services Homeless youth School students Australia
Neither cost nor other barriers should prevent any population group from having timely access to care whenever they have a significant health concern or from receiving appropriate advice and opportunities to maximize their health when they are well. There are many anecdotal reports that a substantial proportion of young Australians, when they have significant health concerns, do not seek health care, or seek, but do not receive, care that satisfactorily allays their concerns. 1054-139X/04/$–see front matter doi:10.1016/j.jadohealth.2003.06.011
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The issue of access has been one of major concern to the practice of adolescent medicine since its inception, and was studied extensively in the 1960s and 1970s. The social context of health care has altered greatly since then. There have been many political, economic and cultural changes, and an explosion in the availability of information and in modes of communication. These changes are likely to affect how and why young people access health care. Access to health care services for adolescents has been extensively studied in the U.S. for the past decade and a half. Even where knowledge of services exist, major barriers to access include: fear of confidentiality, embarrassment, and cost, in particular, being uninsured [1–5]. Certain subgroups are less likely to access health care. Risk factors for not seeking or not receiving care include being uninsured, older and male, living in a rural setting, and being from some minority ethnic groups [1– 6]. Barriers to access for homeless youth also include lack of knowledge of services, fears about confidentiality, and being uninsured [7]. By contrast, the United Kingdom’s nationalized health system would possibly make cost a negligible issue with regard to access. British research into barriers to access for adolescents suggests that the individual adolescent’s personal concerns about embarrassment and confidentiality to be major reasons for not seeking help [8,9]. Many British adolescents have also reported that they do not seek help even when they have a serious health concern, particularly a sexual health concern [10]. A recent study of French adolescents found that, with regard to physical health problems, young people preferred to self-treat or seek the assistance of family, but were prepared to access a health professional if the problem were serious or persistent. With regard to emotional/relationship problems, young people were reluctant to seek professional help, citing embarrassment, shame, and a sense of futility [11]. Overall, the international literature suggests that some of the barriers to accessing health care experienced by adolescents are universal (e.g., embarrassment, shame, fear of lack of confidentiality, particularly with regard to emotional, mental, and sexual health problems). It also appears that other barriers are peculiar to each health care service system. There are very few investigations into the reasons young Australians do not seek or receive adequate help when they have a health concern. The Youth Policy Development Council [12] consulted with 3000 young people about their health concerns and identified hours of operation, lack of transport, cost,
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inappropriate waiting rooms, and treatment by receptionists as concerns about confidentiality and lack of knowledge of available services as significant barriers to accessing care. The Victorian Youth Advocacy Network [13] surveyed their peers (aged 12–25 years) with regard to access to community health centers and identified a very broad range of barriers, but did not explore their sociodemographic distribution. The study reported here is the first of a planned multiphased program of research and development (The Access Study) intended to discover factors which influence access to primary health care among adolescents and to develop and implement effective responses based on sound evidence. Phase 1 is a needs assessment which focused on young people, family practitioners (FPs), community health center (CHC) staff, youth health service staff, and youth workers. In this paper the main findings of Phase 1 for young people are described.
Methods Design Quota sampling by required characteristics was used to select the high schools (see procedure below) from which school students were recruited. Purposive sampling, a form of nonprobability sampling [14,15], was used to recruit high school students and also out-of-school young people. This study was approved by the Children’s Hospital at Westmead Human Research Ethics Committee, the NSW Department of Education and Training, and the Human Ethics Committees of the Area Health Services in which health staff were interviewed.
Sample Selection Two groups of adolescents were approached to participate: those who regularly attended private or government-run schools and “out-of-school” young people; those who did not attend school, attended sporadically, or who had left mainstream education and attended alternative education programs. Inschool adolescents were stratified by gender, age, urban/rural place of residence, and socioeconomic status (SES) (Table 1). New South Wales (NSW) is comprised of 17 Area Health Services (AHS), of which five metropolitan, one regional, one coastal, two inland rural, and one remote rural AHS were selected. These AHS were selected because they represented most aspects of the
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Table 1. Number of Focus Groups in Each Stratum of the In-school Sample by Age and Gender, and by Location and Socioeconomic Statusa of School Attended Boys Age (yrs) School Socioeconomic status (SES) Urban lower SES Urban middle SES Urban higher SES Geographic locationb Regional Rural a b
Girls Age (yrs)
12–14
14 –16
16 –17
12–14
14 –16
16 –17
2 3 3
4 1 3
4 3 2
4 3 4
2 5 4
3 3 3
1 2
0 3
1 3
0 4
1 6
0 4
Applied to urban areas only and based on ABS SEIFA index [16] by postal code. “Regional” refers to towns with populations in excess of 250,000 and “rural” refers to smaller towns or villages.
Sydney metropolitan area and rural/regional NSW (including the full range of SES). In addition, some AHS were selected because there were few adolescent health initiatives under way and others were chosen because a great deal of innovative activity was being undertaken. All Youth Health Services located in the participating AHS were approached to participate in the study. Out-of-school young people were recruited through the youth health services (see below). Every AHS in NSW had previously nominated at least one community health center (CHC) on the basis of its history of being (or interested in becoming) a youth-friendly service. Each of the selected CHC were located on a street map of metropolitan Sydney and all of the high schools within a radius of 2–3 km were identified and approached to participate in the study. All NSW postcodes were rankordered on the basis of the Australian Bureau of Statistics SEIFA (Socio-Economic Indexes for Areas) Index [16] and classified into tertiles. Each school that agreed to participate in the study was identified as being in the low, medium or high tertile of SES on the basis of its postal code and the school recruitment process was continued until sufficient schools had been recruited to allow us to conduct at least three focus group discussions for each cell represented in Table 1. Recruitment In each of the participating schools, the liaison teacher was asked to select an “average” group of 10 boys or an “average” group of 10 girls from Year 7 or Year 8 (12–14-year-olds), Year 9 or Year 10 (14 –16year-olds) and Year 11 (16 –17-year-olds). As some of the issues raised may be gender-sensitive, and to identify any gender differences, students were inter-
viewed in single gender groups. The liaison teachers were asked to avoid selecting the most articulate or outspoken students, but to identify students who were typical of their peers. Liaison teachers were also asked to select a group of students who were comfortable in a group situation (not too disruptive) to facilitate open discussion of some potentially intimate matters. Only those who provided informed parental consent participated. All focus groups were conducted by one of the authors (D. Bernard) and most ran for about 50 minutes. Food and drink were not provided for in-school young people because they were already familiar with each other, but refreshments were provided for out-of-school young people and service providers. Different approaches were taken to recruiting out-of-school young people. Some were directly invited to participate and others were recruited through in-house advertising. Out-of-school young people were paid for their participation.
Identification of Focus Group Discussion Prompts Issues for discussion with young people were identified in four ways: (a) the published literature; (b) issues identified by the chief investigators and members of the Project’s Advisory Group based on their experiences of working with young people; (c) the results of several pilot focus group discussions; and (d) issues which arose during the course of the focus group discussions and interviews.
Data Analysis As this was an exploratory study, a qualitative approach was adopted [17]. Focus groups were used as an appropriate method to obtain the range of
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views held by young people on the study topic [18]. Given the range of sociodemographic characteristics (age, gender, SES, urban/rural location) by which the sample was stratified, it was necessary to conduct a large number of focus groups to obtain sufficient numbers for analysis within each cell (see Table 1). Eighty-one focus groups were conducted in 28 schools across NSW from September 2001 to March 2002. Thirty-five groups of boys and 46 groups of girls were interviewed. Although the majority of focus groups were conducted in urban areas (56 groups), there was strong representation of rural areas (22 groups) and some representation of regional areas (3 groups). All focus group sessions were tape-recorded and transcribed. Responses to the issues raised by the group facilitator were analyzed for themes. However, given the very large number of focus groups, only 51 were analyzed using a computer software package known as NUD*IST 4 [19]. The transcripts of the remaining 30 focus groups were searched for any relevant information not already identified.
Results Definitions of Health Most young people defined “health” in terms of physical health. Definitions included “fitness, food, your physical state, hygiene, keeping your body in good condition…” In response to probing by the facilitator, some young people accepted the relevance of sexual and mental health being included. Those who included aspects of health other than physical well-being were all in Year 11 and of these, females were more likely to offer a broader definition of health than males. Definitions of health did not vary with SES or with urban/rural place of residence. Out-of-school young people (who tended to be in the 15–17 year age group) tended to have broader definitions of health, including physical, emotional, social, and psychological aspects of health.
Health Issues Despite an apparently narrow definition of health, young people identified a broad range of situations or conditions which they believed affect their health. These included: mental health issues, social issues (such as lack of recreational activities), sexual health issues, drug and alcohol issues, stress or pressure, diet and body image, bullying, safety (including on
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the street and at home), relationships, employment and educational opportunities, homelessness, poor self-esteem, perceived teacher’s sexism (i.e., female teachers toward male students), income, and transport. The issues varied in their importance (the frequency with which a theme was mentioned or affirmed) depending on the age, gender, and urban/ rural location of the respondents and whether they were in-school or out-of-school young people. SES appeared to be unrelated to the issues identified except for a slightly higher concern about street safety among younger females in lower SES areas and among out-of-school young people. Preferred Sources of Help Young people were asked from whom they most frequently sought help when they had a health concern. Approximately one-half of all young people, particularly males, did not seek help from anyone at all. If they discussed these issues, the majority discussed them with those with whom they were close. Two-thirds of females and one-third of males identified the following people as sources of advice or support when they had a health concern, in descending order of importance: friends, parents (especially mothers), siblings, friends of the opposite gender (mostly males approaching females), “People you really trust,” other family members (e.g., cousins), no one (1/3 females, 2/3 males), priest, responsible community elder (certain ethnic groups), and youth leader. Only a small number of young people considered seeking help from a service provider. Those who did had usually come to know a particular service provider by coincidence and had formed a positive relationship with him/her. Because young people viewed health primarily in physical terms (particularly males) they accepted general practitioners, medical centers, and emergency departments of local hospitals as appropriate for dealing with these concerns. A small number of older girls also attended FPs, medical centers, or women’s health centers for contraception and sexual health information. However, young people were generally unaware that FPs might be trained in skills such as counseling, and, when prompted, were dubious about the possibility of FPs having such skills. Few young people had ever heard of community health centers and thought they were places where “old ladies go to knit.” Females sought help more than males. Younger adolescents (Year 7) were more inclined to seek help from their parents, whereas older adolescents (Years
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10 and 11) were more inclined to seek help from their friends. A small proportion of older females (Year 11) had good relationships with, and sought help from, their mothers, but these were exceptions to the rule. There were no apparent urban/rural or SES differentials in preferred sources of help. Out-ofschool young people were just as reluctant to seek help as in-school young people and gave the same reasons with some additional reasons specific to their circumstances (e.g., “. . . I think if you are a drug user, they don’t want to help you, they see you as the lowest”). Use of Service Providers When young people did seek help from a service provider, they approached the following, in descending order of importance: FPs they knew and trusted, school counselors, youth health/youth services (primarily out-of-school young people), Centrelink (a federal government welfare service; primarily outof-school young people), FPs that they did not know (on purpose, they found it easier to talk to someone they did not know about intimate concerns and believed that the FP would not be able to inform their parents of the consultation), counselors not based in schools, other school staff (e.g., a trusted teacher), community telephone counseling services, women’s health services, and adolescent mental health services. Again, females were slightly more likely to seek help and younger adolescents (especially Year 7 males) were more likely to seek help from school counselors. Other services young people were aware of included: the police, refuges, safety houses, Police Citizens Youth Centres (PCYC), youth centers (drop in), youth groups (usually church run), the Reach Out website, Juvenile Justice, Job Placement Education and Training Program (JPET), the Salvation Army, Kids Helpline, the Department of Family and Community Services, psychologists, local council services, and, rarely, a community health center. Knowledge of services and what they provided was limited among all young people across SES strata, gender, age and rural/urban settings. Older adolescents (Year 11) had slightly greater knowledge of services, particularly regarding contraception. Younger adolescents (Year 7/8) generally had very limited knowledge of services and believed that their parents would take them somewhere if they required help (“…I’d rather talk to someone like my Mum…”). There were substantial gender differences with regard to accessing services, with females re-
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porting greater knowledge of, and willingness to access, services. Girls, but not boys, made comments such as “…if I was trying to work out stuff, I would go…”. The only SES differences were that young people attending private schools suggested that their parents might access private counselors if they were needed. They were, however, no more inclined to attend than other young people: “…you wouldn’t go though, you would be ostracized…”. Out-of-school young people were far more likely to be aware of available services, particularly youth health services. Nevertheless, they reported that they did not access services unless they were in crisis or had heard “…positive word on the street…” about the service. Out-of-school young people often used a service for the first time because they were forced to (e.g., they were sent to a youth service by Juvenile Justice and then formed a positive relationship with the service provider). They greatly valued the medical service provided in youth health services. Although young people knew little about services, they stated that they would not use them even if they did know more about them: “…you go to someone you know and trust and they know you.” Consequently, access was generally accidental on the first occasion. That is, young people attended a GP for a physical health issue and formed a good relationship and knowledge of what was provided, or because of active publicity by a service (e.g., FP/CHC services in schools). As one student confirmed “…I’ve known him for a while and he is really good to talk to…”. Barriers to Accessing Services The following were mentioned by young people as barriers to accessing services, in descending order of importance: confidentiality (referred not just to service providers keeping issues confidential, but also in relation to being seen going to a service), embarrassment, feeling vulnerable/scared/stupid/ ashamed/embarrassed/too proud to admit having a problem, don’t know about service or what it offered, don’t think they need to, find it difficult to talk about their health concerns, no one would be able to relate to their concerns, service provider has a different background from out-of-school young people (they went to university and are perceived to have had a happy family life), cost/waiting lists (FPs only), services are not friendly, feel that they would be judged and criticized, wrong gender (usually mentioned by females), not manly to seek help, inadequate transport, believe that FPs were not trained or skilled in anything other than physical
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health, and inconvenient opening hours. The barriers reported by young people can be grouped into three factors. The first group relates to the perceptions or beliefs of young people that cause them a great deal of personal anxiety or concern about accessing services. The most important barrier is that confidentiality would not be kept, both in terms of service providers keeping disclosures confidential and being seen attending a service. The next most important related to personal embarrassment in being able to disclose their health concerns and their belief that they would not be understood, taken seriously or treated respectfully (“…they wouldn’t understand…they are too old and they would look down on you…”). The second factor included young people’s knowledge of services and when it is appropriate to attend. Many young people were not aware of the range of available services, nor of the range of skills that providers might have that could be relevant to their needs. The third key factor included structural factors: costs, accessibility, opening hours, and waiting times. The barriers to access were almost universal across the sociodemographic groups. An important addition was that girls resident in rural areas reported that very few female family practitioners were available. The consequences of this shortage of female FPs were that the waiting lists were two to three weeks long, the girls did not wish to “waste” the FP’s scarce time with concerns that were not serious, and services for which adolescents were not directly charged were rarely available, making cost a significant barrier for many.
Discussion Despite most young people restricting their stated definitions of health to physical well-being, most had broad perspectives on the factors which might affect their health. When young people had a significant health concern, a great many of them did not seek help and when they did, they were more likely to seek help from those with whom they were close rather than from health professionals. However, a study conducted among adolescents in England found that the person from whom help was sought depended on the nature of the health concern [20]. Family members were approached for help for minor ailments, but friends and siblings were approached for help with a relationship problem. Rosenthal and Smith demonstrated that for sensitive issues, such as
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sexually transmitted infections, there is a mismatch among young people’s preferred sources of health information (the mass media, friends), the perceived credibility of that source, and its use by young people [21]. They found that although health professionals might be perceived as the most credible sources of help, they are not accessed. Our study’s findings are congruent with those findings and have highlighted the need for a multifaceted response. Young people were not only frequently unaware of the range of services available from FPs, but expressed some skepticism that FPs could be so broadly skilled. Nevertheless, when young people did seek help, it tended to be from either school staff or family practitioners; confirming schools and family practice as key settings for the delivery of health care to young people. Strategies to improve access to services should begin to explore how schools and family practitioners could work together. There were three key groups of barriers to young people accessing health care. The first group included concerns about confidentiality, a finding common to several studies conducted in different countries [3,20]. Oppong-Odiseng and Heycock identified several factors which influenced concerns about confidentiality: proximity of the service provider to the adolescent’s local environment, previous experience, attendance with a parent, the relationship of the service provider with others (e.g., school staff, parents), legal obligations of the service provider, and severity of the condition [20]. In addition, young people expressed embarrassment and discomfort about disclosing their concerns. This group of findings is consistent with our current understanding about adolescent cognitive, psychological, emotional, and social development whereby self-consciousness, lack of experience within the health system, lack of maturity, and experience in negotiating relationships are all operating. The emphasis currently placed on teaching health professionals techniques for developing trusting relationships with adolescents reflects this understanding well. Assisting young people to feel more comfortable in disclosing their intimate concerns represents a challenge and is likely to take time and a variety of approaches. The second factor included inadequate knowledge of services that, we speculate, should be relatively simple to address. The third group of barriers included structural factors such as cost and accessibility (location and hours of opening). These barriers appeared to be far less salient for young people than those discussed above, but that may be a function of the fact that
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many young people rarely use services. If young people were to use services more frequently, structural service-related issues might come to feature more prominently. Potential solutions might include: modifications to the way the service functions, providing services at schools, and developing youthspecific services which may be stand-alone or integrated with other health or social services. In contrast to conventional wisdom, we did not find any clear associations among SES and definitions of health, health issues, sources of support for health concerns, or reported barriers to receiving health care. This is arguably the most important finding of the study as it is almost a truism among Australian health professionals that there is an inverse association between SES and access to health care. We did, however, find associations among age and gender and the study factors. Younger adolescents and girls were more prepared to seek help from someone when they had a health concern and girls expressed a greater willingness than boys to access services. A recent study in the United States also found that adolescent boys accessed health care services significantly less than girls of the same age [22]. Younger adolescents (aged 12–13 year) still relied on their parents for access to health care. It appears that those aged approximately 13–16 years, particularly boys, are least likely to access health care when they might benefit from it, and therefore efforts to improve access should focus, but not exclusively, on the needs and interests of this group. Our study has enriched our understanding of the health concerns of young people and their helpseeking behavior. It is crucial that health services do become more youth friendly and that young people and their support networks, such as family and friends, are informed and educated about these services and how to access them. For young people, the key to their use of health services is trust, and the path to connecting young people with health care services is providing appropriate opportunities for them to develop that trust. This study was funded by a grant from the NSW Health Department to the NSW Centre for the Advancement of Adolescent Health.
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