Confidentiality breaches in hospital: the experiences of young people and parents
Intended for healthcare professionals
Evidence and practice    

Confidentiality breaches in hospital: the experiences of young people and parents

Claus Sixtus Jensen Clinical nurse specialist and postdoctoral researcher, Aarhus University Hospital, Aarhus, Denmark
Marianne Eg Nursing researcher, Paediatrics and Adolescents, Viborg Regional Hospital, Viborg, Denmark

Why you should read this article:
  • To enhance your awareness of the reasons for breaches of patient confidentiality in healthcare settings

  • To learn about the experiences of confidentiality among young people, their parents and related caregivers during a hospital stay

  • To identify areas that could be addressed to ensure the confidentiality of children and young people is protected in hospital settings

Background Healthcare professionals, including nurses, have a vital role in protecting patient confidentiality. However, evidence shows that breaches of confidentiality are common in hospitals for various reasons, including the ward design and issues related to healthcare staff’s professionalism. The situation can be complicated further in paediatric care because of the age range of patients and their associated needs and rights about information sharing, confidentiality and consent.

Aim To explore the views and experiences of young people admitted to hospital, and their parents and related caregivers, about the effects of confidentiality breaches.

Method A descriptive questionnaire-based survey was conducted in 2018 in two regional hospitals in Denmark over two weeks. A total of 214 surveys were completed by parents and related caregivers (n=173) and by young people (n=41).

Findings Many parents and young people reported that they had overheard healthcare professionals discussing care, including information about named patients, test results, personal disclosures and various comments or opinions. In many cases these breaches of confidentiality affected patients’ overall experience of hospital and led some to withhold important information.

Conclusion This study demonstrates the challenges of preserving confidentiality in children’s wards. Situations in which confidentiality breaches were reported appear to have been affected by the physical environment, such as ward design, as well as staff behaviour and attitudes. Therefore, nurses and other healthcare professionals need to enhance their understanding of issues related to confidentiality and pay attention to how and where information about patients is shared.

Nursing Children and Young People. doi: 10.7748/ncyp.2022.e1389

Peer review

This article has been subject to open peer review and checked for plagiarism using automated software

Correspondence

claus.sixtus@skejby.rm.dk

Conflict of interest

None declared

Jensen CS, Eg M (2022) Confidentiality breaches in hospital: the experiences of young people and parents. Nursing Children and Young People. doi: 10.7748/ncyp.2022.e1389

Acknowledgements

The authors wish to thank the respondents in this study for taking the time to complete the questionnaire

Published online: 07 March 2022

Background

Healthcare professionals, including nurses, have an essential role in safeguarding the personal information shared with them by patients, as outlined in The Code: Professional Standards of Practice and Behaviour for Nurses, Midwives and Nursing Associates (Nursing and Midwifery Council 2018). However, research has demonstrated that patient confidentiality is often breached (Olsen and Sabin 2003, Olsen et al 2008, Hartigan et al 2018, Noiseux et al 2019).

One reason for such breaches is that hospital ward design often makes it challenging to protect patient confidentiality (Hartigan et al 2018, Krupic et al 2018). For example, it can be challenging for patients to share information in emergency departments without being overheard (Olsen et al 2008, Beltran-Aroca et al 2016) and this can occur during triage, in waiting areas or in observation rooms where beds are separated only by curtains (Beltran-Aroca et al 2016). Additionally, bedside handovers can be detrimental to patient confidentiality because most patients are not cared for in single-bed rooms and conversations may be overheard (Kerr et al 2014).

Another reason for confidentiality breaches is that, due to an increase in the number of patients admitted to hospitals and shorter lengths of stay, healthcare professionals have little time to determine who patients want to share their health information with (Olsen et al 2008, Beltran-Aroca et al 2016). Some confidentiality breaches may be a result of healthcare staff indiscretion, for example talking about patients in public areas such as lifts or leaving computers unsecured (Beltran-Aroca et al 2016, Hartigan et al 2018). Overheard disclosures may affect patients’ trust and confidence in healthcare systems and in their relationships with healthcare professionals (Krupic et al 2018), which could lead to them withholding information (Koivula-Tynnilä et al 2018).

The General Data Protection Regulation (GDPR) enforced by the European Union (EU) in May 2018 emphasises the importance of paying attention to the protection of personal data (EU 2018). For the UK, the EU has adopted an ‘adequacy decision’ which guarantees the free flow of personal data between the two areas for four years, ending in June 2025 (European Commission 2021).

Unlike other specialties, paediatrics is defined by age rather than by organs, so paediatric departments – which can include emergency departments, outpatient clinics, neonatal units and other specialised and general acute care wards – manage a broad range of patients, from premature babies to young people, in a variety of clinical settings. This is a challenge for healthcare professionals in the context of confidentiality because the needs of young people are different from those of children in terms of parental involvement, and some authors have reported conflicting parental attitudes about young people and confidential consultations, with some parents expressing that they should be present during consultations regardless of the child’s age (Thomsen et al 2019).

In response to these challenges identified in relation to confidentiality, the authors of this article initiated two studies based in Denmark. The first study investigated healthcare professionals’ experiences of protecting patient confidentiality. This article reports on the second study, which examined the views and experiences of confidentiality among young people, their parents and related caregivers (such as grandparents) during a hospital stay.

Implications for practice

  • Healthcare professionals’ knowledge and understanding of issues related to confidentiality should be assessed and monitored to protect the privacy of children, young people and their families

  • There is a need for initiatives to ensure parents and children and young people understand their rights in terms of confidentiality in healthcare settings

  • Healthcare professionals should pay attention to how and where information about patients is shared, because confidentiality breaches can affect children and young people’s overall experience of hospitalization

Aim

To explore the views and experiences of young people admitted to hospital, and their parents and related caregivers, about the effects of breaches of confidentiality.

Method

This study used a descriptive questionnaire-based survey. Young people, their parents and related caregivers were asked about their experiences of confidentiality during a hospital stay in one of two children’s wards. The survey was developed specifically for this study and was based on the author’s previous qualitative study, which used relevant literature and focus group interviews with healthcare professionals to gather information on their experiences about patient confidentiality. Feedback from a pilot of the questionnaire with stakeholders in the children’s wards led to some minor changes in wording for clarity. Box 1 provides a summary of the contents of the questionnaire.

Box 1.

Summary of the contents of the questionnaire

Young people were asked:

  • If they had overheard staff talking about them and, if so, where, what kind of information and how did it influence their experience of hospital

  • If they had overheard hospital staff conversations about other patients and, if so, where, what kind of information and how did it influence their experience of hospital

  • If they had withheld any information due to the risk of others overhearing the information

  • If they had seen sensitive information and, if so, where

  • If relatives or friends were given detailed information about their condition and, if so, were they asked for permission for this in advance

  • If they were offered conversations alone with healthcare professionals

  • If they wanted to have conversations alone with healthcare professionals

  • Any comments or experiences related to confidentiality during their hospital stay that they would like to share

Parents and related caregivers were asked:

  • If they had overheard staff talking about their child and, if so , where, what kind of information and how did it influence their experience of hospital

  • If they had overheard hospital staff conversations about other patients and, if so, where, what kind of information and how did it influence their experience of hospital

  • If they had withheld information due to the risk of others overhearing the information

  • If they had seen sensitive information and, if so, where

  • If relatives or friends were given detailed information about their child’s condition and, if so, were they asked for permission for this in advance

  • Any comments or experiences related to confidentiality during their child’s hospital stay that they would like to share

Young people and their parents or related caregivers were approached by the nurses managing their care and asked to complete the survey during their stay and return it anonymously in an envelope provided. The researchers were not present during data collection and healthcare professionals were instructed to leave the parents and young people to complete the questionnaire without intervention, thereby avoiding respondent bias.

Participants and setting

The study was conducted between November 2018 and December 2018 in two children’s wards in two regional hospitals in Denmark over a two-week period. One of these hospitals is in the Central Denmark Region, which has a population of approximately 1.3 million. Its children’s ward has a bed capacity of 31 and cares for patients ranging from neonates to those aged 18 years. The other hospital is in the Capital Region, which has a population of about 1.8 million. Its children’s ward has a bed capacity of 76 and cares for patients ranging from neonates to those aged 18 years.

Eligible participants were patients aged 15 years to 18 years and their parents or related caregivers. Potential participants were excluded if they did not read the questionnaire.

Data analysis

Two researchers (CSJ and ME) entered the data gathered from the surveys into Enalyzer, an online platform for conducting and analysing web-based surveys. Descriptive statistics were extracted to describe respondents’ demographics and their experiences of confidentiality. Data were checked for errors or answers that did not make sense and none were found. Respondents were given the opportunity to add free-text answers to provide information if they did not understand any of the questions, but none of them did so.

Ethical considerations

Under Danish law, ethical approval and written consent are not necessary for questionnaire-based studies (Danish Ministry of Health 2020). Respondents were advised that participation was voluntary, and the survey was configured so that individuals could not be linked to their responses, thereby ensuring anonymity.

Findings

A total of 214 surveys were completed, 173 by parents and related caregivers and 41 by young people. The ages of the parents and related caregivers ranged from 21 years to 70 years (mean=38 years), and 63 (36%) of these respondents were male, while 110 (64%) were female. Among the young people who responded, 18 (44%) were male and 23 (56%) were female, their ages ranging from 15 years to 18 years (mean=16 years).

Of the respondents, 9% (n=15) of parents and related caregivers and 12% (n=5) of young people had overheard healthcare professionals talking about their children or themselves. Figure 1 outlines the locations where personal information was overheard and Figure 2 shows the type of information overheard.

Figure 1.

Locations where personal information was overheard

ncyp.2022.e1389_0001.jpg
Figure 2.

Type of information overheard

ncyp.2022.e1389_0002.jpg

When asked if overhearing this information affected their overall experience of hospital, 73% (n=11/15) of these parents and related caregivers and 40% (n=2/5) of these young people said it did not have a significant effect, and some parents said they felt secure knowing that information about their child was shared. However, others indicated that it had an adverse effect on their overall experience of hospital, with 13% (n=2/15) of parents and related caregivers and 40% (n=2/5) of young people reporting that it had a considerable effect. One young person stated: ‘as a child, the trust goes away when this happens.’

Approximately 10% (n=17) of parents and related caregivers and 17% (n=7) of young people stated they had heard staff talk about other patients. Figure 3 shows the locations where information about other patients was overheard and Figure 4 demonstrates the type of information about other patients that was overheard.

Figure 3.

Locations where information about other patients was overheard

ncyp.2022.e1389_0003.jpg
Figure 4.

Type of information about other patients overheard

ncyp.2022.e1389_0004.jpg

Respondents could provide details about their experience of confidentiality during hospitalisation in the survey’s free-text field. Some of them provided example of breaches, such as ‘a medical doctor who was tired of another patient’ (young person) and ‘things related to the patients’ conditions’ (parent). Of the respondents, 12% (n=2/17) of parents and related caregivers and 14% (n=1/7) of young people stated that overhearing information in this way had a significant effect on their overall experience of hospital. Only young people (10%, n=4) reported that they refrained from sharing information with healthcare professionals due to concerns that it would be overheard by others.

Few respondents had seen sensitive information – 3% (n=5) of parents and related caregivers and 5% (n=2) of young people – and only one parent reported that information about their child was shared without their consent. In contrast, 37% (n=15) of young people reported that their healthcare information was shared with their families, with 40% (n=6/15) of them stating that this information was shared without their consent. About half (n=20) of young people stated that they were not offered private consultations with healthcare professionals and 29% (n=12) said they would have liked to have such private consultations.

Finally, respondents were asked to share any additional comments or information to elaborate on their experiences of confidentiality. Notable concerns were sharing rooms with other patients and a lack of privacy when discussing sensitive issues, although there appeared to be an acceptance that it was challenging to avoid these situations in a hospital environment.

Discussion

Clinical practice frequently involves the management and sharing of identifiable and sensitive information. Safeguarding the confidentiality of children and young people in hospital, and that of their parents and related caregivers, depends on healthcare staff’s professionalism and respect for patients’ rights. This study found that some young people, parents and related caregivers experienced confidentiality breaches, which is consistent with other research undertaken in different settings (Clamp et al 2011, Beltran-Aroca et al 2016, 2019). For example, other studies identified cases where information was shared in an office with an open door and sensitive information was discussed in multi-bed rooms, a triage area and in lifts when others were nearby (Clamp et al 2011, Beltran-Aroca et al 2016, 2019). Confidentiality breaches most commonly occurred in public areas in which other people were present in this study and other research (Clamp et al 2011, Beltran-Aroca et al 2016, 2019), demonstrating that sharing confidential information is an issue that requires further attention from healthcare professionals and management. These actions continue inadvertently when confidentiality policies and practices are not in place (Beltran-Aroca et al 2016, 2019, Dapaah and Senah 2016).

In contrast with this study, other investigations of the challenges relating to confidentiality did not examine whether participants were distressed by something they saw or overheard (Beltran-Aroca et al 2016, 2019, Dapaah and Senah 2016). While many of the respondents in this study indicated that their experience of confidentiality breaches had not had a negative effect on their overall experience of hospital, some reported that it had. Consequently, some young people withheld information because they were concerned that it would be overheard. Sawyer et al (2014) asserted that protecting confidentiality is an essential element in positive patient care experiences, yet it appears that this remains an issue.

Some young people in this study reported that information about their condition was shared with their parents without their consent, which demonstrates the need to enhance healthcare professionals’ knowledge about confidentiality protocols and consent for this population. For young people, gradual detachment from their parents is an important part of the process of becoming an independent adult, so during this period particular issues related to healthcare professionals’ duty of confidentiality can arise. For example, while parents may see the benefits of confidential consultations with young people, they may also be concerned about whether these reduce their ability to protect their child.

Boisen et al (2013) conducted a survey of 169 young patients aged between 12 years and 22 years at an outpatient clinic in a university hospital in Denmark, identifying that most young people were unaware of their rights. Although some personal information such as sexuality or use of contraception may remain confidential between young people and healthcare professionals, under Danish health legislation parents must be informed about their child’s health situation until they reach the age of 18 years (Danish Health Authority 2002). However, there is a discrepancy between Danish Health Authority (2002) guidance on healthcare professionals’ duty of confidentiality and the general focus of Danish health legislation on patient autonomy (Danish Ministry of Health 1998), particularly the contrast between young people’s right to informed consent and their lack of rights with confidentiality. For example, it may appear perplexing that an individual aged 15 years can refuse vital medical treatment yet they cannot conduct a conversation with a doctor about how drinking alcohol might affect their illness with the assurance that what they have said will remain confidential.

In contrast, other countries such as the UK have adopted the principle of Gillick competence, which is used in medical law to identify children aged under 16 years who have the legal competence to consent to their own medical treatment without the need for parental permission or knowledge (Griffith 2016).

Limitations

This study was conducted in two children’s wards in two regional hospitals in Denmark, which limits external generalisability but offers an opportunity for further research to compare experiences across hospitals. Although the questionnaires were anonymous, it is possible, as with other surveys, that responses may not have been entirely honest and accurate or that some respondents avoided providing answers they perceived as unfavourable. However, the questionnaires were completed in hospital, which reduced the risk of recall bias.

Finally, data were not collected on the total number of people who were approached to complete the survey, so it was not possible to compare this figure with the number of respondents.

Conclusion

This study identified several challenges associated with preserving confidentiality in children’s wards based on the experiences of young people admitted to hospital and their parents and related caregivers. The main reasons for confidentiality breaches were ward design and issues related to the attitudes and behaviour of staff, including a lack of care and attention to privacy.

The findings of this study suggest that being overheard and overhearing staff conversations about other patients are relatively common experiences in hospitals and this, combined with concerns about inappropriate sharing, could result in some patients withholding important information. This study also demonstrates the value of conducting surveys on confidentiality to identify ways of improving the management of identifiable and sensitive information about children and young people in hospital.

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