Adolescent confidentiality: Understanding and practices of health care providers

Abstract

BACKGROUND:

Adolescent confidentiality may present practice challenges for health care providers related to family, medical, ethical, legal, social and bureaucratic processes. It is unclear how health care providers understand and practice confidentiality with adolescents in Canada.

OBJECTIVE:

To investigate the knowledge and practice of health care providers at Alberta Children’s Hospital (Calgary, Alberta), and to inform practice about the adolescent’s right to confidentiality.

METHODS:

The present study was a voluntary, anonymous online survey. Invitations to participate were sent through the paediatric facility’s electronic mailing list to all currently employed health care providers who potentially engaged in caregiving interactions with adolescents. The survey consisted of 15 closed items and seven open comment items. Closed items were analyzed using descriptive statistics and open comments were analyzed using manifest thematic coding.

RESULTS:

A total of 389 responses were received, representing health care providers in many disciplines. A variety of practices related to adolescent confidentiality and widespread misunderstanding of this issue were apparent. Respondents’ comments revealed individual and team knowledge gaps regarding adolescent and parent/guardian rights, and the difference between the constructs of consent to treatment and the provision of confidential health care for adolescents.

CONCLUSIONS:

While health care providers regard confidentiality as paramount, the present survey revealed a wide variation in understanding and practices regarding confidential care for adolescents. This was revealed in both the qualitative and quantitative data. The authors’ recommended strategies to improve the understanding and practice of adolescent confidentiality include: encouraging individuals’ examination of beliefs; postsecondary instruction; knowledge-translation strategies within programs; and institution-directed guidelines and policy.

In health care, confidentiality between provider and patient is a foundational principle, with rare and specific exceptions that are predominantly related to the imminent harm of the patient or others. Confidentiality is defined as an agreement between the patient and provider whereby information discussed during or after the encounter will not be shared with other parties without the explicit permission of the patient (1–3). While confidentiality is a basic principle of all health care, it may not be clear to practitioners that the practice of confidentiality applies to adolescents. Over the past few decades, the medical literature has extensively documented that effective care of adolescents requires that the interaction be confidential (4,5). Health care providers may have limited knowledge or misinformation related to the medical and legal requirements around providing confidential health care to adolescents and their families, ultimately doing a disservice to this population and impacting patient care. A study involving high school youth indicated that 25% of those surveyed would not seek health care for issues they wanted to keep private if they believed there was a possibility the information would not remain confidential (6). Further research indicated that youth who forgo health care are those at highest risk and those who need health care services the most (7).

In the literature, there has been a great deal of discussion about the minor’s right to consent to treatment. However, scarce literature regarding theoretical and practice-based knowledge of the adolescent’s right to confidential health care was identified. While confidentiality and consent are closely related, the two are different constructs and must be understood apart from one another for adolescents to have access to a confidential health care setting that encourages the disclosure of important health information.

Given such challenges, it is important to generate evidence that describes how adolescent confidentiality is understood and practiced as a foundation for effective health care. The present study aimed to explore the knowledge and practices of staff at a large Canadian paediatric facility related to confidentiality in adolescent health care.

METHODS

The present voluntary, anonymous online survey was available for data collection over 14 days in March 2012 at the Alberta Children’s Hospital in Calgary (Alberta). The survey was developed with input from two focus groups and subsequently pretested by an expert panel of 10 multidisciplinary paediatric health care providers. The survey consisted of 15 closed questions, six of which included a request for open comments. Closed questions included queries regarding demographic data such as profession and years in practice. Understanding and practice of adolescent confidentiality was measured using a five-point Likert scale and included questions regarding:

• Sharing adolescent’s information with parents/legal guardians;

• Opportunities for adolescents to meet with health care providers without parents/legal guardians present;

• Informing adolescents and parents/legal guardians about adolescent’s right to confidential health care and its limits;

• Sharing adolescents’ confidential information with other health care providers;

• Documentation of adolescents’ confidential information in the health record; and

• Health care providers’ knowledge of Alberta legislation related to the provision of confidential care and adolescents’ age.

At the end of the survey, there was a seventh open question, broadly inquiring: “What other comments would you like us to know?” Invitations to complete the survey were sent through the hospital electronic mailing list to all currently employed health care providers who potentially engaged in caregiving interactions with adolescents.

The sample was divided into four groups: nurses, physicians, paramedical psychosocial support and paramedical physical support. The nursing group consisted of both registered and licensed practical nurses; the physician group included both staff physicians and residents; the paramedical psychosocial support group included child life therapists, family support specialists, genetic counsellors, psychologists, social workers, spiritual care chaplains and psychosocial therapy aides; and the paramedical physical support group included dietitians, medical radiation technologists, occupational therapists, pharmacists, physiotherapists, psychometrists, respiratory therapists, speech language pathologists and physical therapy assistants.

Quantitative data were analyzed using descriptive statistics. When examining the differences among respondent groups for each question, Pearson χ² tests were used based on two-sided tests with a significance level of 0.05. Qualitative data were analyzed using manifest thematic analysis (8,9). Coding frame categories matched the research questions regarding understanding and practice with open categories for further analysis of emerging themes. To ensure study rigor, manual coding was verified through triangulation of researchers, with adherence to trustworthiness criteria (10).

Data were password protected with access controlled by the study’s principal investigator. The local research ethics board approved the study protocol.

RESULTS

There were 389 respondents from a potential sample of approximately 1800 employees. Demographics are shown in Table 1 and quantitative survey data are shown in Table 2 and Table 3.

TABLE 1.

Survey demographics

Characteristic	n (%)
Age, years
18–25	17 (4.4)
26–35	115 (29.6)
36–45	107 (27.5)
46–55	101 (26)
56–65	44 (11.3)
>65	5 (1.3)
Sex
Female	339 (87.4)
Male	47 (12.1)
Preferred not to answer	2 (0.5)
Years in paediatrics
0–5	114 (29.3)
6–10	83 (21.3)
11–15	52 (13.4)
16–20	40 (10.3)
21–25	49 (12.6)
>25	51 (13.1)
Role
Nurses	151 (39.3)
Physicians	75 (19.5)
Paramedical psychosocial	70 (18.4)
Paramedical physical	78 (20.2)
Preferred not to answer	10 (2.6)

TABLE 2.

Survey responses: Likert scale questions

Question	Response	All	Nurses	Physicians	Paramedical, psychosocial	Paramedical, physical
8. Do you provide opportunities for adolescents to meet with HCP without their parent/legal guardian present?	Often/always	178 (50)	59 (43.4)	57 (81.4)*	41 (61.2)*	17 (24.6)
	Sometimes/seldom/never	178 (50)	77 (56.6)	13 (18.6)	26 (38.8)	52 (75.4)
10. Do you provide this information to the adolescent: “Everything we discuss with you today is confidential with three exceptions: if you are at risk of immediate harm; if you are putting someone else at risk of immediate harm; if someone else is putting you in immediate harm”?	Often/always	130 (38.6)	30 (23.3)	38 (52)	50 (78.1)*	7 (12.5)
	Sometimes/seldom/never	207 (61.4)	99 (76.7)	35 (48)	14 (21.9)	54 (88.5)
11. Do you provide this information to the parent/legal guardian: “Everything we discuss with your child today is confidential with three exceptions: if they are at risk of immediate harm; if they are putting someone else at risk of immediate harm; if someone else is putting them in immediate harm”?	Often/always	94 (28.4)	23 (18.4)	20 (27.8)	42 (66.7)*	4 (6.4)
	Sometimes/seldom/never	237 (71.6)	102 (81.6)	52 (72.2)	21 (33.3)	58 (93.6)
12. Do you get permission from adolescents to share the information they have given to you in confidence with other health care providers?	Often/always	126 (40)	32 (26.9)	33 (45.8)	37 (59.7)*	20 (36.3)
	Sometimes/seldom/never	189 (60)	87 (73.1)	39 (54.2)	25 (40.3)	35 (63.7)
13. When adolescents give you information in confidence, do you document this information in the health record?	Often/always	170 (59.2)	67 (62)	47 (66.2)	35 (62.5)	19 (40.4)
	Sometimes/seldom/never	117 (40.8)	41 (38)	24 (33.8)	21 (37.5)	28 (59.6)

Data presented as n (%).

^*Demonstrates statistical significance (P=0.05) according to two-sided Pearson χ² tests. HCP Health care practitioner

TABLE 3.

Survey responses: Legislation question

Question	Response	All	Nurses	Physicians	Paramedical, psychosocial	Paramedical, physical
14. Is there an age in Alberta when adolescents have the right to confidential health care?	Yes	109 (32.3)	45 (34.6)	16 (21.7)	30 (48.4)	17 (27.4)
	No	61 (18.1)	7 (5.4)	32 (43.2)	17 (27.4)	4 (6.5)
	Don’t know	167 (49.6)	78 (60)	26 (35.1)	15 (24.2)	41 (66.1)

Data presented as n (%)

When communicating the limits of confidentiality to adolescents and their parents or legal guardians, paramedical psychosocial support staff were significantly more likely to answer ‘often’ or ‘always’ compared with physicians, nurses and paramedical physical support staff (78% versus 52%, 23% and 12.5%; and 67% versus 28%, 18% and 6%, respectively). With regard to sharing confidential information with other health care providers, paramedical psychosocial support staff were also significantly more likely to obtain permission from adolescents compared with nurses (60% versus 27%).

Respondents who had worked <5 years in paediatrics were significantly more likely to answer ‘often’ or ‘always’ to the question about communicating limits of confidentiality to adolescents compared with respondents who had worked in paediatrics for ≥25 years (50% versus 23%). There was also a relationship between documentation of confidential information in the health record and experience. Staff who worked ≤10 years in paediatrics were significantly more likely to document information that adolescents shared with them in confidence in the health record compared with those who had worked in paediatrics for ≥25 years (67% and 71%, respectively, versus 37%).

Fifty per cent of survey respondents did not know whether there was an age in Alberta when adolescents were entitled to receive confidential health care, and an additional 32% erroneously believed that there was.

Qualitative analysis revealed three main thematic categories: beliefs, knowledge and practice. Within these categories were two subgroups of ‘opportunity versus intention’ and ‘myth versus fact’, which were aligned with three levels of responsibility, ranging from individual to team to institution. While survey items did not include inquiry related to beliefs, respondents revealed related information in the open-ended and response questions, indicating that values and beliefs create a basis for how adolescent confidentiality is ultimately understood and practiced. Reported beliefs included broad interpretations of confidentiality and confusion regarding the roles and responsibilities of adolescents, family and health care providers, as well as how family-centred care is defined. Confidential health care for adolescents was considered by some to be incompatible with family-centred care. Other analyses of respondent comments revealed individual and team knowledge gaps regarding adolescent and parent/guardian rights, and the difference between the constructs of consent to treatment and the provision of confidential health care for adolescents. Institutional knowledge gaps included lack of evidence-based resources, and guidelines or policies regarding the practice of adolescent confidentiality.

DISCUSSION

While health care providers regard confidentiality as paramount, the present survey reveals a wide variation of understanding and practice regarding confidential care for adolescents. This was revealed in both the qualitative and quantitative data. This variable understanding is important to note because it appears that all health care providers require some level of further learning and practice support to uphold adolescent confidentiality.

Survey responses revealed the importance of addressing the following concerns:

• Years of work experience: Staff who had worked fewer years reported practicing adolescent confidentiality more effectively and consistently, suggesting the need to provide continuing education for all health care providers.

• Role differences: Paramedical psychosocial support providers were more aware of confidentiality issues than other health care providers, suggesting the need to augment awareness with other multidisciplinary groups.

• Confidentiality versus consent: Comments revealed that there may be confusion between the concepts of confidentiality and consent to treatment.

• Knowledge gaps: Only 18% of respondents were aware of legislation related to providing confidential health care in the province of Alberta, suggesting the need for greater education.

Survey responses indicated confusion regarding how to reconcile the concept of family-centred care with the provision of confidential health care for adolescents. Because one of the four core concepts in family-centred care is ‘information sharing’, some health care providers believe all information must be shared with parents/legal guardians. However, another core concept in family-centred care is ‘respect and dignity’, which is upheld with adolescents when they have access to confidential health care (11). Ultimately, the decision to share information must belong to the adolescent, with the exception of disclosure related to imminent harm.

While the present study was performed at the Alberta Children’s Hospital in Calgary, Alberta, we speculate that there may be similar practices in other settings, in Canada as well as in other countries. For example, the provision of private and confidential health care was evaluated in a study involving a large sample of high school students in New Zealand. Only 27% of the total sample of 9107 students were offered private and confidential health care (12).

Confidentiality is considered to be an integral part of all health care relationships. In adolescent health care, confidentiality is particularly important (6,7,13,14). However, there is often misunderstanding and confusion about how and when to offer confidential health care to adolescents because of its close relationship to consent to treatment. Adolescent confidentiality is related to consent to treatment, but they are essentially different constructs and must be understood apart from one another. Some clinicians believe that to offer adolescents confidential health care, they must assess and document that person as a mature minor in the health record. Others believe that as long as the adolescent is younger than 18 years of age, and the parent or legal guardian is signing the consent for treatment, the parent or legal guardian should be present at all medical appointments and have access to all information shared with health care providers. The complex nature of the parent-child relationship in the context of a family-centred approach, along with the adolescents’ developing need for autonomy and continuing need for support, can pose significant ethical challenges for health care providers. When the health care provider is confronted with a situation in which he/she is part of a triangle between the parent and the adolescent and their individual values and beliefs are challenged by the situation, it is important to have a sound and solid knowledge of their jurisdiction’s legislative framework regarding confidential health care for adolescents and consent to treatment (15,16).

The accuracy of the response rate to the online survey is difficult to determine. Staff may have been on more than one electronic mailing list, staff may not have checked their e-mail during the time the survey was available and it was not feasible to determining how many of the 1800 staff receiving the survey had the potential to engage in caregiving interactions with adolescents. However, the data gathered from the 389 respondents are important and worth sharing, even if the percentage of returns was low.

Some potential respondents may have had a different understanding and interpretation of self-selecting and, with surveys based on self-reporting, there is always the possibility for discrepancy between what is reported and reality.

The various clinical roles were grouped into categories to generate meaningful sample sizes for analysis. The distinction between paramedical psychosocial support and paramedical physical support was unclear at times, and there were some respondents’ roles that fit appropriately into both categories. The grouping of these specific roles did not change the overall findings.

We will use the information from the present study to develop educational interventions in our institution (17). Our initial focus will be with one multidisciplinary group to refine techniques before broadening our approach with other groups, specific professions and new recruits. Emerging technologies will impact privacy, and our educational approaches will, thus, require constant attention to ensure continued relevance (18). Formal policy development is essential and we are working with appropriate health care and educational authorities.

Our findings are unlikely to be unique. Our study should be replicated and expanded in other institutions that provide health care to adolescents. However, it may be beneficial to establish the role groupings in advance to enable health care providers to determine which fits best. Also, the understanding of how family-centred care may apply to adolescents must be explored, as well as similar studies performed involving health care providers regarding their understanding and practice on the related issue of capacity to consent.

CONCLUSION

There is widespread inconsistency among health care providers regarding understanding and practice of adolescent confidentiality. Provision of adolescent confidentiality becomes confused by misunderstandings about family-centred care, capacity, legal responsibility, and authority to consent to medical care and treatment. Many health care providers wrongly assume a need to assess and document that an adolescent is a mature minor before providing confidential health care. Because knowledge gaps lead to practice gaps, adolescents’ rights to confidential health care may not be fully respected and medical histories may be inaccurate and incomplete, affecting assessment, interventions and outcomes.