Ethical Challenges in School-Based Immunization Programs for Adolescents: A Qualitative Study

Abstract

Objectives. We investigated ethical issues in school-based immunization programs for adolescents and how they are addressed.

Methods. We used qualitative methods and an ethnographic approach to observe 9 secondary schools on immunization days in South Australia in 2011; concurrently, we conducted 9 focus groups with female secondary school students, 6 semistructured interviews with parents, and 10 interviews with nurses and teachers. We explored ethical challenges from the perspective of these groups.

Results. We identified ethical challenges for the delivery of adolescent immunization in a school-based setting in 3 main areas: informed consent, restrictions on privacy, and harm to students in the form of fear and anxiety.

Conclusions. We found areas in which the design and delivery of school-based immunization programs can be improved. Information about immunization should be provided in ways that are appropriate to young people and their parents, and privacy protections should be enhanced when possible. Involving young people in the design and delivery of programs would assist with making these improvements.

In recent years, numerous new vaccines have been introduced into the routine immunization schedule for adolescents. In a range of countries, including Australia, Canada, Malaysia, Norway, Sweden, and the United Kingdom, secondary schools are the main setting for the delivery of adolescents’ immunizations. These immunizations are funded by the government and provided to students (usually aged 12–13 years) in secondary school through a school-based immunization program (SBIP). Immunization nurses organize and deliver the SBIP and use school communication channels to distribute information and consent forms to students and their families. “Immunization day” involves the delivery of vaccines to entire year groups of students whose parents have given consent.

In Australia, the SBIP has been the most efficient way to achieve reasonably high coverage of government-funded vaccines for adolescents, with about 80% of adolescents receiving a booster dose of diphtheria, tetanus, and pertussis and just over 70% of adolescent girls receiving 3 doses of the human papillomavirus vaccine (HPV).^1,2 The UK school-based program achieves even higher coverage than does Australia’s for HPV vaccination among adolescent girls.³ In the absence of legislation and national registries, most other countries that do not use SBIPs achieve far lower vaccine coverage rates for school-aged girls—in some cases, 30% or lower for the 3 doses of the HPV vaccine.³

Despite these successes with uptake of HPV vaccine in Australia and the United Kingdom, numerous challenges remain for SBIPs. Some countries achieve only modest coverage (approximately 55%) when using an SBIP to deliver adolescent vaccines,³ suggesting that it is not clear which factors are most significant for high vaccine uptake in these programs.⁴ For example, very little is known about whether adolescent understanding and attitudes influence the success of SBIPs and what role young people play, or wish to play, in accepting or declining immunization, particularly in a school-based setting.⁴ In addition, there is growing concern that increasing the number of vaccines for adolescents included on the SBIP schedule may compromise previously successful programs, potentially resulting in a reduction in previously high coverage of existing vaccines.^5,6

Immunizing adolescents through SBIPs can also create ethical challenges. In both Australia and the United Kingdom, parental consent is required and child assent should be sought.⁷ Some young people in this age group are “mature minors”—they are able to make reasoned choices that reflect an appreciation of the consequences of their actions^8–10—and their needs and preferences may not always align with those of their parents.¹¹ Children below this threshold can also have settled values, beliefs, and views about immunization, and it may be difficult to establish the extent to which these should be taken into account.^10,12–15 In addition, although health care professionals are bound by both law and ethical codes of conduct to maintain confidentiality and privacy for patients,¹⁶ schools tend to have open door policies on adults and students being in the same room together. These factors are important to understand and consider both for the success of new and existing programs and to ensure that these programs are ethically acceptable to all stakeholders.

These ethical challenges also reflect the ethically contentious environment of immunization program delivery more generally. From the outset, mass immunization programs have been ethically challenging, in part because of their dual role as clinical interventions for individuals and as public health programs.¹³ Yet, surprisingly little attention has been given to the ethical issues that arise specifically in the design and implementation of SBIPs. With the exception of a recent article by Thompson,¹⁷ description and analysis of the ethical issues in SBIPs have focused almost exclusively on ethical arguments for and against the use of vaccine mandates.^18–21

We explored ethical issues arising in the context of a successful school immunization program from the perspective of participants in the program.

METHODS

Using qualitative methods and an ethnographic approach, we studied the delivery of immunization in South Australian secondary schools. An information pack sent to parents via the students provided information about the vaccines and the diseases they prevent. The pack included a brochure and a consent form to be signed by a parent or guardian and returned to the school before immunization day. In some schools, immunization nurses also ran information sessions for students, although student education is neither a requirement nor part of the guidelines or policies for SBIPs. Over the 2011 school year, we observed 16 immunization days in 9 schools (7 schools on 2 separate immunization days). In addition, we concurrently conducted 9 focus groups with 38 female students in year 8, semistructured interviews with 6 parents (mothers of female students), and 10 teachers and immunization nurses. We explored ethical challenges from the perspective of these groups.

Sampling and Data Collection

All secondary schools in South Australia with more than 500 students were eligible to be included in the study (n = 91). We sampled purposively to ensure a mix of schools of different sectors, socioeconomic backgrounds, and administrative regions reflecting the distribution of schools across South Australia. We also ensured that there was 1 girls-only school from each sector. We telephoned each school to introduce the study and then e-mailed an explanatory letter about the study to the school principal or the principal’s nominated liaison person (usually a teacher).

Participating school principals consented to immunization day observations; in these schools information packs and consent forms requesting participation in the focus groups and interviews were distributed to all female students in year 8, all parents of year 8 students, the school liaison person, and any other teacher involved in the SBIP. Immunization nurses were identified through our study advisory group and through contacts made via the participating schools.

We recruited 9 schools: 4 government, 3 nongovernment, and 2 Catholic, including 1 girls school from each sector and a mix of large and medium-sized schools from across the state government regions. We checked immunization rates for the geographical location of each participating school and established that the participating schools represented areas with high and lower immunization rates. We included all students and all parents who agreed to participate in focus groups and interviews. We did not collect additional demographic information about the focus group or interview participants.

Two members of the research team (R. T., J. C., or C. P.) observed each immunization day with permission from the school principal. One study team member was located in the prevaccination waiting area and the other with students postvaccination. Research team members recorded comprehensive field notes throughout the immunization day process guided by an observation template.

We conducted interviews with mothers by telephone, which ranged 20 to 40 minutes. We conducted student focus groups at the schools during lunch hour, which also ranged 20 to 40 minutes. An interview schedule guided interviews and focus groups, which explored parental views on perceptions of school-based immunization and other health programs, including understandings of purpose, decision-making processes, actual experiences, and the extent of any involvement of students and parents in the design and content of these types of health programs. We conducted face-to-face teacher and nurse interviews, which lasted 40 to 60 minutes. In teacher interviews, we explored perceptions of school-based public health initiatives, specific experiences with HPV and other immunization campaigns and health programs in schools, and the impact immunization and other health programs may have had on their teaching. In nurse interviews, we explored existing collaborations between health, education, and industry sectors for the delivery of the SBIP.

We developed the observation template and interview and focus group schedules on the basis of the literature^22,23 and the results of a pilot study conducted in 2009 by some of the research group.²⁴ (These documents can be found in supplementary file 1 at http://www.ajph.org.)

Analysis

Three of the authors (R. T., J. C., and C. P.) analyzed the focus group, parent, teacher, and nurse interviews, and observations as individual data sets initially, using a thematic analysis framework and standard qualitative methods (creating summaries of interviews, focus groups, and observations and identifying key themes), supported by Nvivo9 software.²⁵ A. B.- M. and J. C. then combined and reviewed analyses of all the data. We identified key ethical issues by focusing on those matters and situations in which choice or conflict was apparent, there was disagreement, or pain, harm, or suffering appeared to be present.²⁶ All team members reviewed the summaries and contributed to later stages of the analysis.

RESULTS

We identified ethical challenges for the SBIP in 3 main areas: informed consent, harm from fear and anxiety, and privacy (supplementary file 2, available online at http://www.ajph.org, contains additional quotations and material).

Informed Consent

In general, SBIPs in South Australia have well-organized mechanisms for gaining informed consent from parents, which, at least in a formal sense, attend to the accepted elements of consent: information provision, decision-making capacity, and voluntariness.⁷ Despite these arrangements, we identified challenges for informed consent for each of these elements.

Information provision.

A key ethical challenge for the SBIP was parents’ and students’ concern that the information they received did not meet their needs. The need to standardize consent forms and information brochures for large-scale distribution made it difficult to provide information that was tailored to individuals and even harder to assess the extent to which this information was understood. Some parents thought the brochure alone did not provide enough information:

Perhaps a bit more about the implications of not getting the vaccine, and . . . a little bit more about when is the right age for a young girl to have pap smears. There was no information about that, whether it should be done prior to sexual—you know, having activity, or a certain age. None of that was really explained, and I think, you know, if you’re not diligent enough as a parent to sort of look into that, that could slip through too. (Mother #6)

Other parents were satisfied with the information provided:

I certainly appreciated the information at the start and the offer is there, were any questions or anything that someone could be contacted. (Mother #1)

The students held a range of views about information they had received on HPV immunization. Although some students felt that the information was adequate, most said that it was too complex and they could not understand or remember it.

Girl #1: I think enough was said on the piece of paper. I just didn’t understand it because it was more in adult content, I suppose, and more in harder words.

Girl #2: So you thought, well, I don’t know what that means, I don’t know what that means, and I definitely don’t know what that means. (Focus Group #6)

They also thought that it was all a little embarrassing:

Girl #2: It was a little bit embarrassing.

Girl #3: Yeah, just sitting there.

Girl #4: I didn’t think it was embarrassing because I’m with the girls who do it.

Girl #5: All the girls had to get it and . . .

Moderator: How did you find that embarrassing?

Girl #2: Because—especially the girl one because we’ve never—we don’t know that person that was speaking to us, and, yeah, it was fine, but it was just a little bit awkward. You didn’t want to ask any questions because you didn’t know them. (Focus Group #1)

Students also had a list of topics about which they wanted to learn more. In particular, questions about pain and the needle were common and, in the students’ view, adults tended to downplay or deny that there would be any pain associated with the vaccination. Students also suggested that information might be better coming from a trusted teacher or staff member with whom the students already have a relationship.

Decision-making capacity.

Parents, students, and nurses expressed a range of views about the extent to which students should be involved in decision making about whether to be immunized, depending on their views on the maturity and capacity of young people to make this decision. Most of the students believed that young people of their age should not be allowed to make the decision themselves:

Girl #1: I reckon a lot of people wouldn’t because they'd either be scared or just didn’t want to get it done. There’s lots of different reasons why a young person wouldn’t want to get a needle because I think that’s a fear that a lot of us have when we’re young. I know that we’re getting older now, but we’re still young. I hate needles; I’m still scared of needles. I think that our parents help reassure us that it’s for a good cause. . . .

Girl #2: It’s going to be okay afterwards.

Girl #3: . . . and that’s what we need. I reckon if it was all up to kids, not many people would get it done.

Moderator: That’s true. Do you all agree with that?

Girl #1, Girl #2, Girl #3: Yeah. (Focus Group #3)

Nonetheless, they acknowledged that students may want to have more information about the immunizations they will receive without necessarily wanting to decide for themselves.

Parents also thought that their children were too young to make these decisions for themselves. Although many parents encouraged their child to be involved in the decision-making process to some degree, most felt ultimately the decision had to be made by them:

I think they are still underage. I think it should be something that parents should make a decision for them, really. I mean obviously if they are distressed by having an injection and they are going to be really sort of upset about it, well, then I wouldn’t. But I have got a daughter that is fairly sensible, so it’s not a hard decision for me to make. (Mother #2)

By contrast, nurses tended to encourage students to play a more active role in the decision-making process:

I tell them that . . . that we need to get that into them before they become sexually active. Even though I tell them all to talk to their parents—even the boys—you take the form home, discuss it with your parents, it’s your body. You need to know what’s happening to your body, and they need to know how you feel about it. (Nurse #1)

Voluntariness.

During our observations we viewed a small number of instances in which students seemed unwilling to accept the immunization. There were several instances in which students presented on immunization day with a consent form signed by their parents and they were clearly distressed and unwilling to have the immunization. In these instances, they were persuaded, usually very gently, to do so by the school staff and nurses.

Privacy and Confidentiality

The public nature of the school setting created significant challenges for privacy and confidentiality in the SBIP we studied. To manage the student flow, immunizations had to be conducted in settings such as gymnasiums or classrooms, where interactions between students and nurses could be viewed or heard by others. As Teacher #1 put it:

I think that I don’t like the space that we do it in but that’s—you know, we’re limited with where we can do it. It’s quite public; there’s people around. I’d prefer it to be less of that, less daunting waiting outside and then coming in bits at a time, but it does [go] smoothly.

There were a variety of practices that did not seem to respect students’ privacy: in some schools, students waited outside before and after immunization in large groups; students could sometimes observe other students being immunized; male and female students were not always separated; and conversation between the nurse and student could sometimes be overheard. One of the necessary questions asked of every girl receiving the HPV vaccine was “Are you pregnant?” and this question (and its answer) could often be overheard by peers.

Girl #1: I know it’s unlikely, but one question every single person who gets any of them done, before they get theirs done, they ask, are you pregnant? It might be embarrassing for some people if they are.

Girl #2: Yeah.

Girl #1: You’d have to say it in front of the person next to them.

Girl #2: Everybody will stare at them.

Girl #3: Especially, like, friends. I’m not saying just our home groups, but a lot of—I know that girl that’s likely to spread rumors or, you know, just tell everyone because that happens; we’re girls.

Girl #1: I was so shocked when they asked me. I’m, like, no. (Focus Group #3)

Students, teachers, and parents all recognized that these environments were not ideal because they did not offer an acceptable degree of visual or auditory privacy. Nurses were also aware of these problems, but they explained that they were constrained by the limitations of the school layout and resources.

Harm to Students

Observations and focus group findings showed that students were very anxious about being immunized. Students were fearful of the needle, and most of their anxiety revolved around perceived pain. Fear and anxiety was generalized across all needles (at the time of this study in South Australia, year 8 students were offered HPV, varicella, and hepatitis B vaccinations). During observations, 1 of the most common phrases we noted from the students when first approaching the nurse or administrative staff was “Does it hurt?” The focus group participants described their experience as “terrible,” “horrible,” “scary,” and “nerve wracking.” The single most important piece of information that participants in the focus groups wanted to know concerned the physical experience of receiving the immunization.

Students’ fear of immunization day also included concern about what the nurses would be doing and saying. The observers noted students asking each other questions such as “What will the nurse do?” and “What will she say to me?”

DISCUSSION

We identified ethical challenges in 3 areas: informed consent (including aspects of information provision, decision-making capacity, and voluntariness), privacy and confidentiality, and harm from fear and anxiety. These ethical challenges arise in part from the tension between the requirements of providing a clinical service, which brings with it a set of specific ethical obligations and expectations, and the most efficient means of delivery of an adolescent public health program being the school setting. Some of the challenges can be addressed by adopting the same strategies used in office-based immunizations; for example, fear and anxiety can be ameliorated by using humor and distraction.²⁷ However, the tension is unlikely to be fully resolved, as there will clearly be limits to the extent that a mass immunization program can mimic the environment of a general practice or pediatric office setting.²⁰

Nonetheless, identifying and understanding the ethical challenges in SBIPs can highlight areas in which the design and delivery of SBIPs could be improved. On the basis of the ethical challenges we identified in our study, we suggest that there are at least 3 lessons that might be applied to SBIPs to enhance their ethical acceptability and potentially increase their effectiveness. First, SBIPs should aim to provide information about immunizations in ways that are appropriate to young people and their parents. Drawing on established principles of effective school health promotion education^28–30 and specifically involving students, parents, and teachers in the development of guidelines and resources would help ensure that the information provided is tailored to the needs of students and parents and delivered in the most effective ways to enhance understanding. Although each school setting is different, much of this information could be prepared with the assistance of students and parents who represent the range of schools in the region or state. Such an approach would, for example, explicitly address students’ fear and anxiety about immunizations. Students in our study also indicated a preference for information to be delivered by someone trusted by them, suggesting that if the program were delivered in association with a teacher in the context of existing school health education programs, fear of the vaccination process might be reduced.

Second, our study found that, in general, students and their parents thought decision-making responsibility should be vested in parents. Nurses seemed to place greater emphasis on informing students, which might reflect their health background (wanting to educate patients about health issues) and their experience in the SBIP with students who may have parents who may not be well equipped to help with health education. Recent research in Australia indicates that the proportion of young people who obtain information on sexual health from their mothers is just under 50% for females and 25% for males, and it is lower for fathers.³¹ Regardless of their views about who should make the decision, all participants thought that students needed more information about cervical cancer and the HPV vaccine itself. In addition, the students were particularly concerned to learn more about the actual experience of receiving an immunization. Interestingly, students could separate their desire for more information from wanting to make the decision themselves.

Finally, providing clarity on the privacy that can be afforded in a school setting and enhancing privacy protections where possible is important, particularly as there are limits on what can be offered. As far as we can tell, this issue has not been identified or addressed in previous published articles evaluating SBIPs.³² Information about the SBIP could mention the nature of the setting in which immunizations will be provided and its limitations. Involving young people in the development of immunization day strategies to enhance student comfort and privacy would also help. Finally, if schools are not able to provide the appropriate facilities to ensure privacy for their students, they may need extra support to use the facilities they have more effectively.

Limitations

We recognize that there are limitations of this study. Our study setting was limited to 9 secondary schools in South Australia, and thus the findings may not be generalizable to other populations and other settings.

We relied on self-selection for interviews and focus groups with parents, students, and teachers, and these participants may have had greater interest in immunization than does the general population. However, the use of multiple data sources and range of schools included minimized the importance of this limitation.

Conclusions

Immunization is a key component of communicable disease prevention, and an increasing number of immunization programs are being developed and offered to adolescents. Although schools offer an effective means of delivery for these programs, the school environment also creates specific ethical challenges. It is crucial that we identify, understand, and address the ethical issues inherent in the delivery of these programs in schools and the tensions that exist. Doing so will ensure that SBIPs are ethically acceptable and effective.