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Confidentiality With Adolescents in the Medical Setting: What Do Parents Think?

  • Rony E. Duncan
    Correspondence
    Address correspondence to: Rony E. Duncan, Ph.D., Centre for Adolescent Health, 2 Gatehouse Street, Parkville, Victoria 3052. Australia
    Affiliations
    Centre for Adolescent Health, Royal Children's Hospital, Parkville, Victoria, Australia

    Children's Bioethics Centre, Royal Children's Hospital, Parkville, Victoria, Australia

    Bruce Lefroy Centre for Genetic Health Research, Murdoch Children's Research Institute, Parkville, Victoria, Australia

    Murdoch Childrens Research Institute, Parkville, Victoria, 3052, Australia

    Department of Paediatrics, University of Melbourne, Parkville, Victoria, Australia
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  • Moya Vandeleur
    Affiliations
    Centre for Adolescent Health, Royal Children's Hospital, Parkville, Victoria, Australia
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  • Anouk Derks
    Affiliations
    Centre for Adolescent Health, Royal Children's Hospital, Parkville, Victoria, Australia

    Faculty of Social Sciences, Radboud University Nijmegen, Nijmegen, The Netherlands
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  • Susan Sawyer
    Affiliations
    Centre for Adolescent Health, Royal Children's Hospital, Parkville, Victoria, Australia

    Murdoch Childrens Research Institute, Parkville, Victoria, 3052, Australia

    Department of Paediatrics, University of Melbourne, Parkville, Victoria, Australia
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      Abstract

      Purpose

      When confidential health care is provided to adolescents they are more likely to seek care, disclose sensitive information, and return for future visits. Guidelines for health professionals recommend seeing young people alone to facilitate confidential care. We sought to document parental views regarding confidentiality with adolescents, aiming to identify topics that parents believe they should be informed about despite an assurance of confidentiality between their child and the doctor. We also aimed to document harms and benefits that parents associate with adolescents seeing doctors alone.

      Methods

      A sample of 86 parents attending an adolescent medicine clinic with their son/daughter was surveyed using a brief, anonymous questionnaire.

      Results

      Parents identified several benefits associated with confidential care, yet also believed they should be informed about a wide range of topics, even if their children did not want them to know. Parents' primary concern about confidentiality was a fear of not being informed about important information.

      Conclusions

      Parental views concerning confidentiality are complex and conflicting and differ from current guidance provided to health professionals. Ensuring that parents accurately understand the limits to confidentiality and support the notion of confidential care for their children is a challenging yet vital task for health professionals.

      Keywords

      See Editorial p. 335
      Concerns about confidentiality can prevent adolescents from seeking health care [
      • Cheng T.L.
      • Savageau J.A.
      • Sattler A.L.
      • et al.
      Confidentiality in health care A survey of knowledge, perceptions, and attitudes among high school students.
      ,
      • Ford C.
      • Bearman P.
      • Moody J.
      Foregone health care among adolescents.
      ,
      • Reddy D.
      • Fleming R.
      • Swain C.
      Effect of mandatory parental notification on adolescent girls' use of sexual health care services.
      ,
      • Klein J.
      • Wilson K.
      • McNulty M.
      • Kapphahn C.
      • Collins K.S.
      Access to medical care for adolescents: Results from the 1997 Commonwealth Fund Survey of the Health of Adolescent girls.
      ]. Adolescents are also more likely to disclose sensitive information and return for follow-up care when health professionals offer explicit assurances of confidentiality [
      • Ford C.A.
      • Millstein S.G.
      • Halpern-Felsher B.L.
      • Irwin Jr., C.E.
      Influence of physician confidentiality assurances on adolescents' willingness to disclose information and seek future health care: A randomised controlled trial.
      ]. Current guidelines about the health care of adolescents are explicit about the need for confidentiality between young people and clinicians and the importance of seeing young people alone for at least part of each consultation [
      Society for Adolescent Medicine
      Confidential Health Care for Adolescents: Position paper of the Society for Adolescent Medicine.
      ].
      Less research has been conducted regarding parental views about confidentiality. Mothers have reported the belief that confidentiality between their daughters and clinicians might promote risky behavior and undermine their ability to protect their daughters [
      • McKee M.D.
      • O'Sullivan L.F.
      • Weber C.M.
      Perspectives on confidential care for adolescent girls.
      ]. Research also indicates that parents hold conflicting views about confidentiality. Parents have been shown to support confidentiality between adolescents and doctors, yet hold simultaneous desires to be provided with details of what is discussed [
      • Dempsey A.F.
      • Singer D.D.
      • Clark S.J.
      • Davis M.M.
      Adolescent preventive health care: What do parents want?.
      ]. Parents have also indicated support for parental notification laws, yet were concurrently able to identify a range of negative effects associated with these [
      • Eisenberg M.E.
      • Swain C.
      • Bearinger L.H.
      • Sieving R.E.
      • Resnick M.D.
      Parental notification laws for minors' access to contraception: What do parents say?.
      ]. There is a lack of information about the specific topics that parents wish to be informed about following a confidential consultation between their child and a doctor. More detail is also required about the complex and often conflicting views held by parents regarding doctors seeing adolescents alone.
      We specifically wanted to document: (a) parental understandings of what a confidential consultation between their child and a doctor means; (b) the topics that parents believe they should be informed about following a confidential consultation between their child and a doctor; and (c) the range of harms and benefits that parents associate with doctors seeing adolescents alone.

      Methods

      A convenience sample of parents bringing their children to an Adolescent Medicine clinic in Melbourne, Australia, were asked to complete an anonymous survey before their medical appointment, between November 2009 and April 2010, during selected times. The survey consisted of 30 questions, both forced choice and short-answer, and took approximately 10 minutes to complete. Ethics approval was obtained from the Royal Children's Hospital Human Research Ethics Committee. Statistical analyses were performed using SPSS (Version 15: SPSS, Inc., Chicago, IL).

      Results

      A total of 107 surveys were received (86% response rate). Of these, 21 were excluded because of missing responses, leaving 86 for analysis. In all, 74% of parents were female, 83% were born in Australia, and 73% were married. Twenty-four percent had completed high school and an additional 48% had completed a higher degree or diploma. All parents were attending the clinic with their adolescent son or daughter; 73% of these adolescents were female, with a mean (SD) age of 15 years (1.8). A total of 78% of adolescents had visited the clinic before and, of these, 64% had been seen alone by a doctor at the clinic. The adolescents attended the clinic for a range of (sometimes multiple) reasons; 35% attended for a medical condition (e.g., headaches, abdominal pain), 14% for a chronic illness (e.g., asthma, diabetes), 49% for emotional issues (e.g., depression, anxiety), and 15% for behavioral issues (e.g., school avoidance, substance misuse).
      Parents were asked to indicate what they understood a “confidential consultation” between a doctor and their child to mean. A total of 30% indicated this meant that “information would always be shared with me but not with anyone else, regardless of my child's views.” Table 1 presents the topics that parents would like disclosed to them after a confidential consultation between a doctor and their son/daughter, even if their child did not want them to be informed. The topics parents most wished to be informed about included depression and other mental health issues, eating disorders, and drug use. More than half of the parents also wanted to be told about sexually transmitted infections, pregnancy, and alcohol use.
      Table 1Topics that parents would like doctors to inform them about, even if their son/daughter did not want them to be informed (n = 86)
      TopicPercentage of parents who would like to be informed
      Depression/other mental health issues87%
      Eating disorders81%
      Use of drugs (other than marijuana)78%
      Use of marijuana67%
      Sexually transmitted infections59%
      Sexual activity—pregnancy57%
      Alcohol use55%
      Missing school43%
      Unsafe driving40%
      Sexual activity—contraception40%
      Cigarette smoking37%
      Relationship problems33%
      Table 2 presents the concerns that parents have about doctors seeing adolescents alone, as well as their beliefs about the benefits of this. Parents' main concern was not being informed about important information. In relation to perceived benefits, more than half of the parents believed that a doctor seeing their child alone would help their child to talk about sensitive matters, allow the doctor to hear their child's point of view, provide practice for their child at speaking to the doctor alone, help their child to take responsibility for his or her health, and acknowledge their child's developing maturity.
      Table 2Parents' beliefs about the harms and benefits associated with doctors seeing adolescents alone (N = 86)
      Belief about doctors seeing adolescents alonePercentage of parents who acknowledge holding this belief
      Concerns
       Not being informed about important information44%
       My child would not remember the treatment plan21%
       My child not telling the truth15%
       My child may not want to see the doctor without me15%
       I would not be informed about the treatment plan14%
       My child does not understand the issues8%
       My child does not have the confidence8%
       Feeling excluded8%
       Less time for me to spend with the doctor5%
       My child is too young5%
       My child is not ready2%
      Benefits
       Opportunity to talk about sensitive matters71%
       The doctor will hear my child's point of view63%
       Practice for my child in talking to the doctor alone61%
       Helping my child take responsibility for his/her health57%
       Acknowledges child's developing maturity52%
       Strengthens bond between doctor and child40%
       My child wants to see doctor alone37%
       Will help child become more mature31%
       Child will be more truthful29%
       It is normal practice6%

      Discussion

      Parents believe they should be informed about a wide range of health risk behaviors and concerns following a confidential consultation between their child and a doctor, even if their child does not want them to be told. The list of topics they wish to be informed about is much greater than those outlined within clinical guidelines or medico-legal frameworks for health professionals [
      Society for Adolescent Medicine
      Confidential Health Care for Adolescents: Position paper of the Society for Adolescent Medicine.
      ]. This has significant ethical implications; if parents believe that such information will be disclosed to them, they may falsely infer that if they are not informed about such behaviors, these are not occurring. There is also the possibility that false parental assumptions could be shared with adolescents, preventing young people from seeking health-care because of concerns about parental notification [
      • Cheng T.L.
      • Savageau J.A.
      • Sattler A.L.
      • et al.
      Confidentiality in health care A survey of knowledge, perceptions, and attitudes among high school students.
      ,
      • Ford C.
      • Bearman P.
      • Moody J.
      Foregone health care among adolescents.
      ,
      • Reddy D.
      • Fleming R.
      • Swain C.
      Effect of mandatory parental notification on adolescent girls' use of sexual health care services.
      ].
      It is important to know that parents' fundamental concern about confidentiality is a fear of not being informed about important information. Current guidance explicitly states that healthcare professionals should educate adolescent patients and their families about the limits and protections to confidentiality [
      Society for Adolescent Medicine
      Confidential Health Care for Adolescents: Position paper of the Society for Adolescent Medicine.
      ]. However, ensuring that parents accurately understand protections to confidentiality has the potential to further exacerbate their (genuine) concerns about not being informed. Research has shown that education (both verbal and written) can change parental opinions about privacy [
      • Hutchinson J.W.
      • Stafford E.M.
      Changing parental opinions about teen privacy through education.
      ]. In this regard, it is encouraging to note that parents were able to acknowledge a range of benefits associated with doctors seeing adolescents alone, despite the fact that only 6% believed this was normal practice. Future interventions targeting parental opinions about confidentiality might benefit from highlighting these positive aspects of confidential clinical practice.
      It is a delicate and challenging task we ask of health professionals; to accurately educate parents about confidentiality while simultaneously ensuring a functional relationship with the family as a whole. Rectifying the discrepancy between parental beliefs and current guidance will rely heavily on building trust with parents so that they feel safe entrusting their children's care to health professionals. This is not a simple or swift task, but it is nonetheless essential if both health professionals and parents are to achieve their shared goal of promoting the safety and well-being of young people.

      Acknowledgment

      Dr Duncan is supported through an NHMRC Research Fellowship.

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