Understanding the Attitudes of Latino Parents Towards Confidential Health Services for Teens

Abstract

Objectives

To explore the knowledge and attitudes that Latino parents have about confidential health services for their teens and identify factors that may influence those attitudes.

Methods

Latino parents of teens (12-17 years old) were randomly selected from a large health maintenance organization and a community-based hospital to participate in one-hour focus groups. We conducted eight focus groups in the parent's preferred language. Spanish and English transcripts were translated and coded with inter-coder reliability > 80%.

Results

There were 52 participants (30 mothers, 22 fathers). There is a wide range of parental knowledge and attitudes about confidential health services for teens. Parents felt they had the right to know about their teens’ health but were uncomfortable discussing sexual topics and thought confidential teen-clinician discussions would be helpful. Factors that influence parental acceptability of confidential health services include: parental trust in the clinician, clinician's interpersonal skills; clinical competencies, ability to partner with parents and teens and clinician-teen gender concordance. Most parents preferred teens’ access to confidential services than having their teens forego needed care.

Conclusions

This study identifies several underlying issues that may influence Latino youth's access to confidential health services. Implications for clinical application and future research are discussed.

Background

Confidentiality is a basic tenet of adolescent health care.^1-4 Protections vary by state, but usually begin at 12 years of age and cover a range of reproductive health, mental health and substance use services.⁵ While it is widely recommended that clinicians discuss sensitive health issues with adolescents in private^4,6, few teens receive this service.⁷ Hispanic youth are significantly less likely to have time alone with their clinician⁸ and have disproportionately high rates of sexually transmitted infections (STIs)/HIV⁹, teen pregnancies¹⁰ and lower rates of contraceptive use¹¹, issues that are often addressed in a confidential health visit.

Clinical guidelines recommend clinicians provide confidential health services to all adolescents, at the same time, they are charged with encouraging partnerships with parents in the delivery of adolescent health services.^4,6 These conflicting guidelines present a challenge for clinicians.¹² Given the importance of confidentiality and parent involvement in adolescent health, it is surprising that little is known about parental knowledge and attitudes toward adolescent confidential health services^13-18, especially among different racial/ethnic groups. To date, there is only one study of Latino mothers which qualitatively found mothers misunderstood that confidentiality promotes risky behaviors and undermines their efforts to protect their daughters.¹⁹ The current study explores Latino parents’ knowledge and attitudes toward adolescent confidential health services in greater depth. It also provides insights into factors that may influence attitudes in general and those unique to Latino families.

Methods

Sample & Recruitment

A random sample of parents with adolescents (12-17 years old) was mailed a letter from the pediatric chief describing the study. “Parent” was broadly defined to include non-traditional parents and caregivers who are responsible for the teen's health. Spanish and English-speakers were recruited from a large California health maintenance organization and an urban community hospital. The letter included a pre-addressed stamped response card to indicate interest and one-dollar to encourage responses.^20,21 Non-returns were telephoned two-weeks later. Clinic staff also distributed and posted flyers with study information. Recruitment and consent materials were pilot-tested with Spanish-speakers. Committees on the use of human subjects approved this study.

Procedures

Participants provided written consent then completed a brief demographic questionnaire. Focus groups were held separately by gender and conducted in participants’ preferred language. Facilitators assured that their discussion would not be shared beyond the group and that there were no right or wrong answers.

The focus group guide (Table 1) was based on a literature review and theoretical framework.^22,23 Facilitators asked follow-up questions to explore pertinent issues and new themes. Questions were open-ended and neutral to minimize bias. Sessions lasted 90 minutes. Participants received a light meal, $50 grocery gift card, and/or cab voucher as needed. An independent observer monitored each session and took notes on emerging themes, reactions and issues affecting the discussion. Audio recordings were transcribed, translated, and proofed for accuracy.

Table 1.

Parent Focus Group Guide: Main Questions

1 What do you know about Confidential Services?

2 Has there ever been a time when your teen's doctor asked to speak with your teen alone?

3 What do you think about doctors talking with teens in private, that is without the parent present and where the parent is not told what was discussed.

4 What do you think about doctors giving teens information to prevent them from smoking, drinking, drug use, sex and STIs?     What do you think about doctors treating a teen for such things as smoking, alcohol/ drug use, STIs, or giving birth control without the parent knowing?

5 What are some benefits/concerns of teens talking in private with their doctor?         What about if the teen is a girl or boy?         Does the age of the teen matter?

6 If a teen needs health care for STIs (information, testing, treatment) why might they avoid getting care?

7 What are the roles of parents, doctors, and teens in keeping teens safe and healthy?     Especially around health issues such as smoking, STIs, alcohol use, pregnancy, etc?

8 What would help make you feel more comfortable with confidential health services for teens?

Analysis

Investigators independently reviewed a series of focus group transcripts and prepared a list of emergent themes. They then discussed convergent/divergent themes across groups and reached consensus on a coding scheme. Independent coders were trained on the coding scheme. At least two independent coders reviewed each transcript. Coding quality checks were performed regularly. Inter-coder reliability was assessed at >80%. Discrepancies were discussed and resolved within the research team. Coded transcripts were entered into HyperRESEARCH, Version 2.8. The investigators analyzed transcript segments for each coding category.

Results

There were eight focus groups. Parents were mostly from Mexican and Central American backgrounds (Table 2). No significant differences existed between responders and non-responders in age or gender of teen. Differences in other variables were not assessed due to limitations with the clinic datasets and inability to contact non-participants.

Table 2.

Demographics of Participants (N=52)

	Female Parent/Caregiver (n=30)	Male Parent/Caregiver (n=22)
Mean age of parents	41 years	43 years
Relationship to Child
Father / Mother	30	21
Grandparent	0	1
Mean number of children	3	3
Gender of children
Male	41	33
Female	36	17
missing	0	7
Language spoken at home
Spanish	17	19
Bilingual (English - Spanish)	13	2
Parent education
Less than High School	11	7
High School Graduate	6	12
Some College	9	1
College Graduate	4	1
Child's health insurance
Public	12	11
HMO	17	10
Private	2	2
None	1	1

Parental Knowledge and Experience with Confidentiality

Parents had a wide range in knowledge of confidentiality. Virtually all were aware that confidentiality referred to privacy between patient and clinician. A few, particularly Spanish-speaking fathers, did not believe teens could receive any health care without parental approval. Others stated confidentiality meant that information remained between the doctor, adolescent and parent. Some felt if such services existed, they were rare and operated secretly. Mothers were generally more aware of confidentiality. Approximately one-fourth had been asked to wait outside the exam room and the majority described their experience as brusque.

“The first time I heard of it, was when they told me ‘Miss, you have to wait outside’ and that was it.” – Spanish-speaking mother.

Some expressed awareness of confidentiality limitations but perceptions were not always accurate. For example, some believed they could request copies of their teen's medical record to access “confidential” information. A few used a teen-clinic for their teen's health care. These parents had a more sophisticated understanding of confidentiality than those went to a general pediatrician.

“it's basically that everything that's said in that visit, behind closed doors will be kept between the doctor and my child unless they're going to hurt somebody or themselves or somebody else is being hurt.” – English-speaking mother.

Parental Reactions to Confidentiality

After parents discussed initial thoughts about confidentiality, the facilitator defined it so parents had a shared understanding of the term (see Figure 1). There was a wide range of attitudes that did not seem to vary extensively by parent gender or language spoken. A small minority of parents rejected any form of clinician-teen confidentiality.

“That word [confidential] is kind of ludicrous because parents have to know.” – English-speaking mother.

The primary concern with confidentiality was not having access to information they would need to help their teen. Parents felt that they are in the best position to help because they have such an important role in their teen's life and interact with their teen on a daily basis. Others felt it was their parental right to information because they were responsible for their teen and have a vested interest in them. They felt clinicians cannot provide the same level of support as a parent.

“...perhaps the doctor would not communicate with us and will let important things go, that could be important for us to know, and that could affect the future behavior of the boy.” – Spanish-speaking father.

Figure 1.

Working Definition of Confidentiality

Comments reflecting full support of confidentiality were also present across most groups but emerged infrequently. These parents believed their teens had a right to privacy and respected their teens’ wishes to withhold information from them. Some parents felt it was a credit to their parenting if their teen accessed services independently because it meant they prepared their teens to take responsibility for their own health.

“If they're able to come to a teen clinic on their own because they know something is not right with their body and they were taught to be able to do that and feel open about it...if they're able to do that on their own at that level, as parents, we did something right.”—English-speaking mother.

Parents largely favored confidentiality for “prevention” topics over “treatment” for a problem. Most parents wanted to be involved in treatment decisions because it was their “parental right” or because they felt their teens were not mature enough to follow through with medications/treatment without parental support. In contrast, support was often contingent on their perceived maturity of their teen.

“How could they possibly be responsible to take prescription drug when they are supposed to take it and follow through? More than likely they'd forget about it. Everybody's different, but you can't count on it.” – English-speaking mother.

Parents also identified several benefits to confidentiality. Very few stated there would never be any benefit. However, most reported that confidentiality helps teens feel more comfortable talking to the doctor and helps the doctor obtain accurate information.

“I know there's stuff they're talking about and he probably would feel uncomfortable talking about things with me there listening” – Spanish-speaking mother.

They also believed confidentiality encourages teens to return to the clinic for care because they have experience in knowing that their parent will not be informed.

“At least they're treating those who are afraid. And once the teens know, ‘Oh my parents aren't going to find out,’ now they go to the clinic more often because they know it's confidential” – Spanish-speaking father.

Many, especially mothers, stated that confidentiality gives clinicians an opportunity to address sexual health topics. They perceived this as a benefit to them because they often feel uncomfortable talking about sex with their own teen or consider it a “taboo” topic. Most never talked with their own parents about puberty and sexual health, but expressed a desire for their children to have this information. Parents reflected back on their own adolescence, to take their teens’ perspectives, and acknowledged that as teens, they did not want to talk with their parents about sensitive, sexual health issues.

“For us Latinos we feel a little bit afraid of talking with our children about sexuality when they are 12 years old. They got their period and I felt embarrassed to tell them, ‘now that you are older you have to be careful,’ because if they have sexual relations they can get pregnant, I feel embarrassed because she is just a girl, and how can I talk about that?” – Spanish-speaking mother.

Several parents stated that adolescents fear negative parental reactions if they found out their teen was engaging in health risk behaviors. This often included fear of disappointing parents. A few parents admitted concerns about their own potentially harsh or violent reactions. Others said they or their partner would “kick” their teen out of the home.

“if we find out, we will jump, we will hit them instead of helping them...end up pushing them away” – Spanish-speaking mother.

In reaction to this, many felt confidentiality helps teens access needed care while protecting them from parents’ potentially harmful reactions.

Most parents hold complex and often conflicting attitudes about adolescent confidentiality. Confidentiality brings out tensions associated with the adolescent transition. Parents assume the primary decision making responsibility when their children are younger. As their child matures the child takes on more responsibility for making decisions about their health and behaviors. Parents often feel the tension between wanting to “know everything” with the reality that their teens are becoming more independent and do not want to discuss everything with their parents. Parents understand that their children need to gain skills to become self-sufficient, however they expressed concerns about losing control as their teen becomes more independent and feeling left out of important parts of their teen's life. A confidential health visit requires parents to relinquish some of their control to a health care professional and brings these conflicting feelings to the forefront.

“I felt I knew everything about [my teen] and this [being asked to wait outside the exam room] was the first time that I felt apart, that I do not know. If it's about their health and the things they need to learn it's o.k. right? But the first time that happens, parents are a little surprised at that moment and we think ‘what happened to my baby?” – Spanish-speaking mother.

“I'm o.k. with confidentiality, but at the same time I'm not, because if something needs to be taken care of you, as the mother, want to know how you can help. You want to know what needs to be done at the same time you want them to be individuals and have the confidential talk with the doctor so it's kind of like we can't have both.” – English-speaking mother.

Parents want their teens to know that they are always available for their teen but they also encourage their teen to talk privately with the doctor if they do not feel comfortable involving their parent. Parents, with very few exceptions, stated they would rather their teens have a confidential visit and get necessary help than have their teen become sick or pregnant.

Parental Trust in Clinician

Across all focus groups, parents frequently reported that they were more comfortable with confidential health services for their teen if they trusted their teen's clinician. Parental trust in the clinician seemed to be associated with four areas of clinician competence: 1) interpersonal skills; 2) clinical expertise; 3) ability to partner with parents and teens; and 4) clinician-teen gender concordance.

(1) Clinicians’ interpersonal skills

Parents trusted clinicians who can establish a positive rapport with the parent and teen. This was described as positive affective verbal and non-verbal behaviors such as warm greetings, reassuring manners, and good eye contact. Continuity of care also allows parents and clinicians to develop a relationship over time which helps establish trust. When the time comes for the parent to be asked to “wait outside” the exam room, parents who trust the clinician feel more comfortable with confidentiality.

“I think it's important as a parent to establish that relationship with your children's doctors. I think if you feel confident with the physician that's seeing your child, then you have some sense of assurance that things [the confidential visit] will be okay.” – English-speaking mother.

When forced to change clinicians, parents expressed concern and frustration with the disruption in their relationship with the clinician.

“I've been assigned with this doctor for three years now and we don't know her. My son still hasn't met her; they always have him see someone else who's filling in.” – Spanish-speaking father.

The time and attention clinicians give parents builds trust and improves parental comfort with confidentiality. Parents understand the time pressures clinicians’ face and describe small but important gestures that show the clinician cares, such as a brief but timely e-mail or phone call. In contrast, parental trust in a clinician is compromised when the clinician appears rushed or inattentive. Clinicians’ communication with parents around issues of confidentiality as well as health care topics in general influence parental trust in the clinician and in turn their comfort and acceptability of confidentiality for their adolescent.

“I had e-mailed my doctor using that new system they have, and I got a response really quickly. He called me within like half an hour. It was nothing major. But that was kinda nice. You feel like, ‘Oh, wow, he cares to read my e-mail and call me back’. – English-speaking mother.

(2) Clinical expertise

Many parents voiced respect for the medical profession. They frequently described clinicians as competent “professionals” who have “advanced training,” and “special knowledge.” Both mothers and fathers expressed a great degree of respect for the clinician and appreciate the medical information and advice they can provide their adolescent. This also made parents feel more comfortable with the clinician having time alone with their teen.

“I know that if she is telling a professional, that person is going to have more opportunity to help them, to talk to them using the adequate words... I feel comfortable when they have that moment of privacy with a professional.” – Spanish-speaking mother.

Although, some parents remained concerned that despite clinicians’ expertise, confidentiality still deprived them of information they needed to help their teen.

Many parents described how a clinician's communication skills affect their comfort with confidentiality. This included the clinician's ability to explain information, communicate effectively with teens, listening skills and bilingual skills. Parents also expressed more comfort if they had a sense of what topics would be discussed and if the clinician made efforts to involve parents. Others were more supportive of confidentiality when invited back into the examination room after the confidential portion of the visit. Parents concerns with confidentiality are somewhat allayed when clinicians acknowledge the important role parents have in their adolescents’ lives, by discussing what to expect in a confidential visit, and providing a summary of the visit.

“Whatever they discussed – I know all the questions that they discussed, I came in, and she made me feel comfortable ’cause she went over everything...”– English-speaking mother.

Parents trust clinicians who speak Spanish when needed and who treat them, especially limited English speakers, with respect and equality. Not understanding the language exacerbates parental discomfort with confidentiality. It makes them feel further estranged from their adolescent's health care because they do not know or may misunderstand what the clinician is saying.

“Yes, it [language] was a barrier, because ... sometimes there are certain things that make us uncomfortable, there are misunderstandings due to the language.” – Spanish-speaking mother.

“...when a person does not speak English, they [doctors/nurses] treat them as if they were inferior to those who do speak English.” – Spanish-speaking father.

A clinician's cultural sensitivity is also important. Confidentiality is a difficult concept to explain regardless of language and can be particularly difficult to understand if there are cultural differences in the delivery of adolescent health care services. Some parents in this study thought that clinicians might be making assumptions about their teen's behaviors because of their race/ethnicity. It is common for health risk assessment to ask about sensitive health issues such as sexual health, mental health, alcohol/drug use and gang violence. However, parents were concerned that clinicians might be stereotyping their teens because of their race/ethnicity and were not certain if these were questions for all adolescents or just asked of teens who clinicians suspected there to be a problem.

“I remember that my son said that they had asked him if he was in any – like in a gang or something...I started thinking like, ‘Okay. Is he kind of just stereotyping you because you're Latin?’ I wasn't sure. Is that a question that they ask all the teens, which is fine, or was it just mine?... I hoped it was a question for all teens, not just certain ones.” – English-speaking mother.

(3) Clinicians’ ability to partner with parents and teens

Parents feel involved and respected when clinicians partner or involve them in their teen's health visit. Parents described their roles as educating the teen to trust the doctor; monitoring their teen's behaviors, and providing their teen with advice and support. They described the clinician's responsibility as educating teens and protecting adolescent confidentiality so teens will continue to get needed care.

“Well, the father's participation has to be to prepare the adolescent so when he go to an appointment not to be afraid that his privacy will be violated. The doctor's role is to respect, give the necessary advice and of course the necessary medicine, and the adolescent knowing all this situation has to educate himself to learn and to participate in this activity of privacy and to take in consideration also the parent's advice.” – Spanish-speaking father.

“My role is to educate them to take them and to teach them to have a better vision of what is going on about the illnesses, and the doctor role would be the privacy from that meeting that nothing go out, and the role of the adolescent to trust the doctor to talk about any problem they have.” – English-speaking mother.

Parents also described their role as preparing their teen to talk privately with a clinician about their questions and concerns. Some parents felt that a confidential visit presents an opportunity for clinicians to encourage and help teens talk with their parents. They also felt clinicians could advise parents on how to talk with their teen thereby continuing to enhance the three-way partnership.

“It would be good that he first talk to the doctor, and the doctor according to how he sees the problem can communicate to us, and he can tell us, be careful in your conversation with your son, do not talk about it directly, little by little, do not talk to him yet so you do not lose his trust, so little by little, because one also feels when our children are in trouble, right?” – Spanish-speaking father.

(4) Clinician-teen gender concordance

Some parents wanted their teen to be seen by clinicians of the same gender. They were concerned about their teen's discomfort talking about sex or having a physical exam by a doctor of a different gender. A few parents, particularly fathers, feared that a male clinician might behave inappropriately toward their daughters.

“Suppose, I have a daughter; she has good curves, and he [the doctor] has temptations, because he is human.” – Spanish-speaking father.

Discussion

This study found that Latino parents had a wide range of knowledge, experience and attitudes around confidential adolescent health services. Most parents hold conflicting attitudes with a mix of concerns and benefits of confidentiality. Their strongest concern was being deprived of information that could hinder their ability to help their teen. A smaller number stated confidentiality violated their fundamental rights as parents to know everything about their child's health. Parents also expressed many benefits. They appreciated that confidentiality provides an important opportunity for adolescents to obtain accurate information, support and services from a trained medical professional. Parents also recognized that many teens do not feel comfortable talking with their parents and felt it was equally, if not more important, for the teen to get necessary help even if it meant they as the parent, would not know.

It was surprising that so many parents of adolescents were unaware of adolescent confidentiality. However confidentiality policies are complex and vary. Clinicians do not always understand them and it is a difficult concept to explain regardless of language spoken. Cultural differences in the roles and values of parents, clinicians and public policies create additional challenges to understanding confidentiality. Research often does not include the perspectives of fathers and their inclusion in this study provided additional insights around cultural and gender differences in the understanding of adolescent health care services. Latino fathers were particularly unaware of adolescent confidentiality and considered clinics as “clandestine” for providing such services. Even so, they were able to generate benefits of confidentiality.

This study also showed that parents struggle with their evolving role as their child becomes more autonomous during adolescence. A confidential visit requires parents to relinquish some control of their child's health to a clinician. At the same time, it provides an opportunity for the adolescent to mature and learn how to take more responsibility over their own health. Becoming comfortable with a confidential visit depends, in part, on the extent to which parents’ trust their teen's clinician. Trust was associated with parental perceptions of the clinician's interpersonal skills, expertise and ability to partner with parents and teens. It also seems related to their perceptions of their own teen's maturity.

There are several limitations to this study. The majority of our sample included Latinos from Mexican or Central American origin who reside in California and may not reflect attitudes of other Hispanics. It is also unclear to what extent these issues are exclusive to Latino parents or apply more broadly to parents from other backgrounds. Selection bias is possible since the attitudes of parents who participated may differ than those who declined.

Despite these limitations, this study has important implications for interventions to improve Latino parents’ acceptance of confidentiality, future research, and health policy. Culturally/linguistically appropriate interventions are needed to improve parental understanding of confidential services, why they are important and what the clinician and parent roles and responsibilities are in maintaining their shared goal of protecting the teen's health. Clinicians can play an important role in supporting adolescents’ transition into adulthood. Adolescents will eventually have to make decisions about their own health and as adults will be responsible for navigating the health care system on their own. Clinicians can communicate to parents that a major benefit of time alone with adolescents will help prepare adolescents with this skill set. Other ways to approach this include preparing parents for the transition from a pediatric to a confidential adolescent health visit, discussing topics that will be covered, reassuring that confidentiality is for all teens and aimed at helping teens feel more comfortable talking about personal health issues with professionals and parents. Parental responsibility for communicating with their teens needs to be validated and supported. Parents who feel more involved and supported may in turn be more accepting of confidentiality. However, more research is needed to better understand the range of parental attitudes in other populations and how these attitudes vary and what influences parental attitudes. This research would inform interventions to improve parental support of confidentiality support parent-adolescent-clinician partnerships. While encouraging such partnerships, confidentiality protections remain critical to ensure adolescents’ do not forego needed care.^1-4,24-26