Nine males (six age 14, one age 15, one age 16, one age 17 years) and 11 females (two age 14, four age 15, four age 16, one age 17 years) were interviewed. Ten were recruited when attending dermatology or surgical outpatient clinics (eight females, two males) and 10 on a general surgery ward (three females, seven males). The sample ranged from young people who had experienced a single acute event within the previous year to those with long term and/or life threatening conditions. The mothers of sixteen and the fathers of two young people (two parents were unavailable) were interviewed. In two cases, the young person and parent were interviewed together, at their request, otherwise parents were interviewed separately from their children.i
Those interviewed lived in areas with a range of social deprivation, all living in two parent households. All were white British in origin. No parent or young person refused to participate in the study. Interviews ranged in duration from 20 to 45 minutes.
While few young people in the study knew that the NHS collects and stores information about patients, some adolescents, who had experienced ongoing NHS contact over several years, demonstrated awareness of the content of their health record:
how I'm progressing…what kind of pills I'm taking (male inpatient, 1, age 14).
I have a very comprehensive idea of the NHS. Since I was a baby I've been admitted—and to outpatients—in hospital over a hundred times. If it is something serious I go straight to the hospital because they have my history there and can treat me quicker…[medical record holds] full information of what happens to you medically (male inpatient, 2, age 14).
Young people's views on sharing health information
Young people in the study understood the concept of privacy and wanted confidentiality respected appropriate to their growing maturity. Although adolescents in the study were mostly happy for parents to have information about current illnesses many believed that information relating to contraception, sexually transmitted infection, or drug misuse should not be passed on by their doctor. Contraception and sexual behaviour were areas of their lives that they wanted to remain private from parents. Young women were more likely than young men to have thought about contraception and wanted confidentiality to be assured, from age 15 in most cases:
…should be private if it is about contraception from age 15 (female outpatient, 3, age 16).
At age 15 to 16 you're becoming independent…and I don't think it's up to the parent if they are having sex…your doctor's supposed to keep it confidential (female outpatient, 4, age 15).
If I was on the pill I wouldn't want my parents to know, and if anything was wrong with me I wouldn't want my parents to know because they would question me (female outpatient, 5, age 17).
If confidentiality is not assured young people might seek health care elsewhere:
If a young person thinks a parent can see their notes [at age 15] they are just not going to go to their GP but will go somewhere else...everything is supposed to be confidential when you see your doctor so parents shouldn't have access to it…(female outpatient, 6, age 16).
These young patients confirm previous findings that assurances of confidentiality affect their willingness to disclose sensitive information.9
Others, in contrast, thought that “Parents have rights too” (female outpatient, 3, age 16).
Several young male inpatients talked about a parent's “right to know”, and were the most inclined to allow parental access to their record until age 18:
because it is the legal age (male inpatient, 7, age 16).
Their opinions, however, tended to change as they considered previously unexamined issues. As they grasped the implications of sharing information young men wished to restrict parental access to current health information, and wanted consultations to remain confidential:
but my age group, there's things that's really confidential that you wouldn't want them [parents] to know (male inpatient, 7, age 16).
because they [child] have gone to the doctor in confidence (male inpatient, 8, age 17).
The views of these young male patients suggest a growing awareness of their own autonomy, which has been seen to grow from excluding parents from certain areas of their lives.11
Generally, young men who had frequent contact with the health service expressed trust in their doctor to preserve confidence:
I trust my doctor to keep a confidence (male inpatient, 9, age 14).
I could trust one of the GPs, who is younger than the two older doctors in the practice who have known my family since my mother was a child (male inpatient, 10, age 14).
Young women with similar NHS contact did not, however, share this view:
because every time I go she asks where my mum is, because my mum knows her quite well (female inpatient, 11, age 15),
because people gossip and there are so many blunders in the NHS (female outpatient, 5, age 17).
Their views support research from the US, which found that young women were more likely than young men to have confidential consultations with their doctors,13
which may be associated with maturity developing at an earlier age among young women.
Adolescents in the study wanted their doctor to ask them before telling a parent about matters discussed in a consultation, and to give them the opportunity to tell the parent themselves. In considering families where the relationship between adolescent and a parent was poor, young interviewees thought the young person should have the final say as to whether their GP disclosed a confidence to a parent.
Concerns over “criminalisation”
Some young women thought that, because sex is illegal below the age of 16 in England and Wales, a GP should not criminalise an adolescent by disclosing such information. Younger male interviewees, in contrast, perceived under age sex as an illegal activity that a doctor should report to a parent.
Many adolescents in the study drew a distinction between consultations for contraception, perceived to be a natural behaviour, and drug misuse. Drug misuse was described as a difficult area for doctors wanting to maintain confidentiality for young patients. Typically, young men perceived the use of illegal substances to constitute a serious risk behaviour, which, generally, a doctor should disclose to parents because it is illegal:
...but if it's—for example, drugs, parents should know about it, especially as they would help stop the addiction, up to age 18 (male inpatient, 7, age 16).
Young women, on the other hand, were more inclined to the opinion that:
Parents should not be allowed to discover illegal behaviour (female outpatient, 12, age 16).
drugs should be kept secret because parents wouldn't understand the problem (female inpatient, 13, age 15).
Previous research shows that high school students may not consult their doctor when the problem is related to substance misuse,8
and that any assurance of confidentiality should be made explicit. Confidentiality is always conditional, and Ford et al16
found that doctors who emphasised their adherence to confidentiality and explained when and why confidentiality could not be assured, reassured adolescents who consulted about sensitive topics.
The need for flexibility in the doctor's response
Although young people in the study thought their own parents always acted in their children's best interests, some recognised that not all parents are benevolent, and that different relationships and circumstances require different responses. A commonly expressed view was that the doctor should encourage the young person to tell parents about very serious situations.
They wanted a doctor first to tell a young person of an intention to disclose a confidence to parents and, where a relationship between parent and child was difficult, to comply with the young person's wish for confidentiality.
In relation to depression and bullying young people in the study considered that:
Bullying and depression is not something to be ashamed of in a way, is it? (female inpatient, 13, age 15)
maybe the doctor should tell the parents depending how serious it is (female outpatient, 3, age 16).
Parent interviewees were unanimous in their wish to be informed about anything associated with their children's health. Ideas changed and developed as some parents discussed, and gave some thought to, issues of privacy and their children's medical records. Parents too, with some reluctance, considered that young people's consultations about contraception should be confidential from around the age of 16:
Break off age should be 16, although I'd like it to be higher (mother of patient 3, age 16).
although one mother:
would go to the doctor with [child] if she wanted to go on the pill…parents should have access till age 18. But I might change my mind and say older, because 18 is still young…as long as she is living at home I would like access to her medical record. Twenty one would be a better age (mother of female outpatient, 14, age 16).
Parents acknowledged that relationships between parents and children vary between different families, and thought doctors should take this into account when deciding whether to disclose a young person's confidence. Parents talked about their “right to know” about behaviours such as misuse of illegal drugs by their adolescent children.
Young people's perceptions of sharing information with practice staff
The range of staff who have access to medical records was surprising to adolescents in the sample. Some had assumed that only their doctor had access, and a few were unhappy about practice nurses seeing records. A typical description of several young people's views on information sharing was:
It's ok if it's necessary for the job, but not if it is just out of nosiness (female outpatient, 6, age 16).
Receptionists were seen as staff who had no reason to access medical records. Concern about them disclosing information was widespread, and often associated with personal experience, such as where a receptionist was a friend of the interviewee's mother. Adolescents thought that receptionists were more likely to “gossip” about a patient's medical condition because they had not shown the same commitment to attain training as doctors and nurses:
If you've made the effort to become a doctor or nurse you must be a really good person to do it in the first place (male inpatient, 2, age 14).
It only takes one sentence and it could be out. Receptionists should be made to sign something saying they won't pass on anything (male inpatient, 7, age 16).
Ignorance about rules of confidentiality in general practice was demonstrated by a number of young people who were worried that, typically:
someone just walks in off the street to look at it [medical record] (male inpatient, 10, age 14).
Adolescents recognised conflict between privacy and independence appropriate to their growing maturity, and an ongoing need for parental protection. Nevertheless they wanted their permission to be sought before parents were given access to their health information. The overall view of young people in the study was that negotiation and discussion with their doctor provided the most satisfactory way of managing this dilemma.