Pediatric oncology healthcare professionals’ attitudes to and awareness of regulations for minors’ and guardians’ online record access: A mixed-methods study in Sweden

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The regulatory framework in Sweden restricting both guardians’ and adolescents’ online record access (ORA) has during recent years received criticism. The aim was to quantitatively and qualitatively, explore attitudes about ORA and perceptions about ORA regulations among pediatric oncology healthcare professionals (HCPs) in Sweden. Methods : A convergent mixed-methods design (QUAL, quan) was used, consisting of a survey study (N=95) and semi-structured individual interviews (N=13). Physicians and nurses in pediatric oncology were recruited in clinics face-to-face or via staff e-mail. Descriptive statistics were used to present quantitative survey results. Interviews were recorded, transcribed, and analysed using content analysis. Results : Participants were critical of the access gap but lacked knowledge about access extensions, with more than 60% unaware of application procedures. Qualitative analysis resulted five themes of benefits ( Improving adolescents' and parents' emotional state, Facilitated parental care management, Empowering adolescents, Improving partnership and communication and Enhanced documentation accuracy ) and five themes of downsides ( Increased emotional distress and confusion, Decreased documentation quality and accuracy, Increased workload, Threatened confidentiality, and Technical portal limitations ). HCPs’ views on regulations were categorized into five themes: Uncertainty , Adolescents differ , Balancing parental support and adolescent privacy , “I understand why access is restricted, but…” , and Regulatory changes. Conclusions : Most pediatric oncology HCPs in this study were critical about ORA restrictions during adolescence, recognizing benefits primarily of parental access. Perceived benefits of enhanced parental support and adolescent empowerment conflicted with perceived risks of confidentiality and emotional distress in adolescents and parents from accessing unexplained results. While ORA has potential to improve partnerships in adolescent healthcare, information, guidance and resources for HCPs are needed to ensure patient safety and quality of documentation. Trial registration : Not applicable. healthcare professionals (HCPs) oncology adolescents adolescent health Patient Accessible Electronic Health Record (PAEHR) Electronic Health Record (EHR) patient portal survey ehealth interviews Figures Figure 1 Figure 2 Introduction Electronic health records (EHRs) are essential to function as an aide memoir and communication tool among healthcare professionals (HCPs) [ 1 ]. Currently, providing patients and caregivers with online record access (ORA) via patient portals is becoming increasingly common among healthcare providers internationally. In the European Union (EU), the General Data Protection Regulation (GDPR) provides individuals with the right to check the data about them in registries such as EHRs. A proposal for a European Health Data Space has been launched, which will give patients online access to their EHRs throughout Europe. A growing body of research recognizes unique benefits of ORA among adolescents and parent proxy users, including adolescents’ supported transition into adult care and improved parental care [ 2 , 3 ]. However, ORA in pediatric care remains a controversial topic and scarce attention has been paid to the views and experiences of portal access policies among HCPs working with seriously ill children. Studies over the last two decades have identified initial provider reluctance to patient ORA that tends to diminish yet prevail to an extent after implementation [ 4 , 5 ]. Some HCPs perceive patients’ access as interfering with the function of the medical record as their work tool [ 6 ], and state that it can contribute to HCP burnout [ 7 ]. Pediatric oncology HCPs’ views and experiences of ORA have been addressed in one US study, where interviewed physicians and advanced practice providers reported benefits in empowering adolescents and supporting parental care. While anticipating that parents losing access might lead to great inconvenience, they worried about adolescents and parents accessing bad news in the EHR without explanation, and reported changing their documentation as a result [ 8 ]. Among HCPs, oncologists are less likely than non-oncologists to see ORA as a way to improve patient safety, less likely to believe patients will take better care as a result, and more likely to think patients will feel in control [ 9 ]. Oncologists in particular are concerned about how sharing notes with patients will impact documentation practices [ 9 , 10 ]. In pediatrics, an additional and persisting concern is patient confidentiality breaches and maintaining the privacy of minors’ information, particularly during adolescence [ 11 – 13 ]. A scoping review identified confidentiality as the main concern among pediatric HCPs and experts [ 14 ]. The confidentiality issue stems from the challenging balance between parental responsibility and adolescents' increasing desire for independence. While parents are often given full access to their child’s records during early childhood, adolescents may desire increased autonomy and privacy. One of the barriers to providing confidential care is limited portal functionality [ 15 , 16 ]. where HCPs are not equipped with tools to conceal information from adolescents and parents in a satisfactory way [ 17 ]. One strategy aimed at resolving this issue has been to limit adolescents’ and parents’ access during adolescence through regulations. Yet, implementation of ORA for parents and adolescents differs globally, in terms of allowance of parental access and the age when the patients can access their records on their own [ 18 , 19 ]. A variety of access control practices attempting to balance parents’ and adolescents’ needs have been adopted, where practices are either based on set age-based access limits or on case-by-case assessment. Study aim Uncertainty remains about HCPs’ views on existing regulations that concern adolescents and parents. Though ORA is an evolving innovation, national patient portals have been accessible for citizens in Sweden and other Nordic countries for more than a decade. The study aimed to investigate, both quantitatively and qualitatively, Swedish pediatric oncology HCPs’ perceived benefits and downsides of adolescents’ and parents’ ORA, as well as their views on and awareness of ORA regulations. The study addresses two research questions: RQ1: What benefits and downsides do Swedish pediatric oncology HCPs perceive regarding adolescents’ and parents’ ORA? RQ2: What are Swedish pediatric oncology HCPs’ awareness of and views on the national regulatory framework around parental and adolescent access to minors’ online records? Methods Study design A convergent QUAL-quan mixed-methods approach was adopted based on a belief that quantitative and qualitative data would complement each other [ 20 , 21 ]. Mixed-methods can be defined as “collection of both qualitative and quantitative methods where data is integrated in the analysis” [ 22 ]. Because the topic has not previously been studied, a survey was used to provide a breadth of data, and interviews were performed to enable a deeper comprehension of the underlying reasoning behind the quantitative findings. Data collection occurred from March 2022 to May 2023 after ethical approval from the Regional Ethical Review Board in Uppsala, Sweden (EPN 2022/02160). The qualitative component is reported according to the Consolidated criteria for Reporting Qualitative research (COREQ) guidelines, see Supplementary Material 1 [ 23 ]. Participants and setting Participants were recruited via mail-out at hospitals and oncology healthcare organizations in 13 of 21 Swedish regions, and information in person at Uppsala Akademiska Hospital in Uppsala, Sweden. HCPs were included who had experience with working with children and adolescents with cancer and who had experience of documenting in the EHRs. Consent was provided by completing the survey. At the end of the survey, participants were able to register interest in participating in an interview and provide their e-mail and/or phone number. Contact information was stored separately from the survey results, ensuring anonymity of the survey. While no incentives were offered for completing the survey, interview participation was rewarded with a gift card of 200 SEK (equivalent to approx. €20). In Sweden, where around 300 children are diagnosed with cancer each year [ 24 ], ORA is advanced and adolescents and parents have access to the PAEHR service 1177 journal via the national patient portal 1177.se. Parents (or legal guardians) have automatic access to their child’s record from birth until they turn 13, and at 16 years old, the child themselves gain access. In the years between 13 and 16, neither parent nor child have access to the record. By filling in and submitting a paper form for an assessment by the operations manager, parents can be granted prolonged access or teenagers/children can be granted earlier access. The portal access policy is not based on Swedish law but on common practice within healthcare [ 25 ], and was set in 2017 by the company managing the web platform [ 26 ]. The policy has been criticised by parents of ill children, such as cases of cancer [ 27 ] or severe disability [ 28 ]. Since before PAEHR implementation, patients and parents have been able to request a physical record copy, which necessitates an individual assessment by the provider whereby the request can be denied. There are also ‘hidden search words’ that can be used by HCPs to conceal information from patients’ view, for example “Early hypotheses”, “Intimate partner violence”, and “Report of concern for a child’s welfare”. Data Collection Survey A survey instrument of 20 questions was developed in Swedish. For this study, 13 questions were included based on the aim: four questions regarding experience, one on views on regulations, three on awareness (with four conditional questions), three on demographics and one on interview participation, see Fig. 1 . Questions were optional, except for those related to inclusion criteria and contact information, which were required if the participant expressed interest in an interview. The full survey in Swedish and English can be found in Supplementary Material 2. Interviews Interviews were conducted via video conference or telephone. The interview guide was revised based on input from a stakeholder advisory board and 3 informatics administrators. An interview guide was created based on prior work on ORA for adolescents, children, and parents (see Supplementary Material 3) and included similar themes as surveys. The first author conducted the interviews between February 2022 and April 2023 via telephone or video-conferencing software. Interviews were audio-recorded and professionally transcribed. JH is a PhD student in health informatics with experience of conducting studies using qualitative analysis and several completed courses in qualitative research. JH had no prior relationship with any of the study participants. Data analysis Descriptive statistics were used to present quantitative survey data. All but one of interviews were transcribed by an expert, and one was transcribed by the main author. Interview analysis was conducted by JH and MH using the software program NVivo ( www.qsrinternational.com/nvivo-qualitative-data-analysis-software/home ). MH is a researcher in health informatics and ORA implementation, with extensive experience in qualitative analysis of interviews. As views on regulations were previously unexplored, we analysed this interview data using thematic content analysis with an inductive approach of the following steps: (1) authors read transcripts to familiarize themselves with the data, (2) data was categorized into codes, (3) codes were grouped into categories and themes, and (4) definitions were refined further through discussions during meetings. Discussions of the findings with all authors led to refinement of the themes. Analysis of perceived benefits and downsides was inspired by previous work [ 3 , 8 ]. Results Sample characteristics Of 126 HCPs who responded to the survey, 8 (7%) were excluded because they did not meet the inclusion criteria and 21 did not complete the survey (17%). In total, 95 (77%) completed the survey and were included in the study. Most participants were women (83/95, 88%) and worked as nurses (56/95, 59%). 17 selected their profession as ‘other’, citing physiotherapist, child specialist, specialist nurse, pediatric nurse, unit manager, and assistant nurse. Survey and interview participants’ demographic characteristics are shown in Table 1 . Table 1 Survey and interview participants’ demographic characteristics and work experience. Characteristic HCP Interviewed (n = 13) Not interviewed (n = 82) All (N = 95) Gender, n (%) Man 3 (23.1) 8 (9.8) 11 (11.6) Woman 10 (76.9) 74 (90.2) 84 (88.4) Other 0 (0) 0 (0) 0 (0) Age, n (%) 18–24 years 1 (7.7) 5 (6.3) 6 (6.3) 25–34 years 3 (23.1) 23 (29.1) 26 (27.4) 35–44 years 2 (15.4) 19 (24.1) 21 (22.1) 45–54 years 5 (38.5) 12 (15.2) 17 (17.9) 55–64 years 1 (7.7) 20 (25.3) 21 (22.1) 65 years or older 1 (7.7) 0 (0) 1 (1.1) Missing 0 (0) 3 (5.7) 3 (3.2) Years of practice, n (%) One year or less 1 (7.7) 6 (7.3) 7 (7.4) 2–5 years 2 (15.4) 27 (32.9) 29 (30.5) 6–10 years 0 (0.0) 14 (17.1) 14 (14.7) 11–15 years 4 (30.8) 10 (12.2) 14 (14.7) 16–20 years 2 (15.4) 8 (9.8) 10 (10.5) 20 years or more 4 (30.8) 17 (20.7) 21 (22.1) Missing 0 (0) 0 (0) 0 (0) Profession, n (%) Physician 4 (30.8) 18 (22.0) 22 (23.2) Nurse 8 (61.5) 58 (70.7) 66 (69.5) Other 1 (7.7) 6 (7.3) 7 (7.4) Of 95 HCPs who completed the survey, 19 (20%) agreed to partake in an individual interview. Subsequently, six participants did not partake in interviews due to scheduling difficulties and lack of response, leaving 13 (68.4%) interviewees. A majority of interview participants (8/13, 61.5%) were female, mean age was 45 years old, and mean number of years of experience was 15 years. Interviews (ranging between 20–79 minutes) were audio-recorded and all but one were transcribed by a professional (one was transcribed by JH). Interview participants’ characteristics are shown in Table 2 . Table 2 Interview participants’ characteristics. ID Gender Age Profession Years of clinical experience in pediatric oncology Interview setting 02 Male 51 Nurse 23 Video 03 Female 59 Nurse 22 Video 06 Female 24 Nurse 1 Video 18 Female 42 Physician 12 Phone 22 Female 58 Nurse 34 Video 33 Female 35 Nurse 13 Video 41 Female 49 Physician 12 Video 69 Female 30 Nurse 6 Phone 72 Male 48 Physician 12 Video 81 Male 27 Nurse 5 Video 104 Female 51 Physiotherapist 13 Video 116 Male 68 Physician 38 Video 118 Female 41 Nurse 13 Video Quantitative results Very few (10%) reported the view that the gap in ORA for parents and adolescents during the period between the ages of 13 to 15 was a good thing. Meanwhile, a larger proportion of HCPs (81/95, 85%) were positive about parents’ access for children under 13 than to adolescents’ access (63/93, 68%), see Fig. 2 . About three fourths of HCPs were positive about the option for adolescents (64/83, 77%) and parents (66/89, 74%) to apply for extended access outside of the default. While more than half (49/91, 54%) considered parental access to the adolescent’s records as useful for their work, HCPs diverged in their responses regarding the utility of adolescents’ access, as 29% (25/87) selected the middle option and 38% (33/87) did not agree. See detailed results in Supplementary Material 4. Content in free-text comments were mirrored in interviews, except for one comment stating that medication management became a big issue for parents when losing access. While 62% (58/94) knew that parents can apply for extended access, three out of five (34/56, 61%) did not know the procedure of application. Even fewer HCPs - only a fifth - were aware that adolescents were able to apply for earlier access (18/94, 19%). Of these, two thirds (12/18, 67%) did not know the procedure for applying. Almost half (26/58, 45%)) of respondents who were aware of the possibility to apply for access extension did not know whether they were authorized to approve such applications. Qualitative results Perceived benefits of ORA for adolescents, parents, and HCPs In general, HCPs experiences differed. While one HCP perceived ORA to cause problems to a degree that it should not be offered, another had worked for 40 years and never heard any parent or adolescent mention the EHR despite ORA being implemented for more than 10 years. HCPs reported five themes relating to perceived benefits of adolescent and parental ORA for adolescents, parents, and HCPs; Improving adolescents' and parents' emotional state, Facilitated parental care management, Empowering adolescents, Improved partnership and communication and Enhanced documentation accuracy . For details, see Table 3 . Table 3 Themes identified in interviews in regards to HCPs’ perceived benefits of adolescent and parental ORA for adolescents, parents, and HCPs. Themes Representative quote Improving adolescents' and parents’ emotional state “It's stressful for all parents even if they can read the EHR, but it becomes an increased stress [without it] because then they are on pins and needles, waiting for a doctor to call.” (Participant #03, nurse with 22 years’ experience) “Parents sometimes say, ‘No, but it helps me that I can go in and see the test results myself, then I feel more secure.’ And some parents make Excel sheets, and then it's easier for them to go in themselves, they think it gives them a sense of control in a different way.” (Participant #18, physician with 12 years’ experience) “In the best case, [parents] feel reassured when they read the EHR and see that the same things they understood verbally. So, it can be very positive to be able to go back after a meeting and see what was planned as well. [...] That you can get some confirmation that certain things that were agreed upon have been carried out.” (Participant #72, physician with 12 years’ experience) Facilitated parental care management “There is chaos in the families that come to us. It is difficult to keep track of everything, ‘when is the next treatment? What was said?’ Both parents may not have been present at the hospital to get the information verbally.” (Participant #02, nurse with 23 years’ experience) “A child experiencing a life crisis when they're still young and perhaps shouldn't have to deal with those life crises, I think it's good that [parents] can be there as a support and be able to access medical records to help them, for example, to remember when they have treatments and so on.” (Participant #81, nurse with 5 years’ experience) Empowering adolescents “That you can take own initiative and go in and check things if you have questions, instead of accepting it or turn to mom or dad [...]. That you, yeah, can do some things by yourself.” (Participant #69, nurse with 6 years’ experience) “Sometimes the teens themselves are very competent and are undergoing a sort of continuous therapy where one is not at risk of big surprises, and where they can feel that they can gradually take responsibility for their illness. If you are 17 and a half and maybe are transitioning from child clinic to an adult clinic, it’s good that one has been able to practice.” (Participant #72, physician with 12 years’ experience) “I don't think [teens] always care so much about the conversations they have with the doctor in person during the day with their parents present, but I think sometimes they may need to be undisturbed when they want to be.” (Participant #118, nurse with 13 years’ experience) Improved partnership and communication “We are only two people, so we don't always answer right away, sometimes it's the answering machine, and it takes a bit of time before we call back, and often they want to know the test results right away when they call the first time. And then it's quicker for them to just log in and look.” (Participant #33, nurse with 13 years’ experience) "Even though [adolescents] are not the ones making decisions, they might have understanding when the healthcare team calls and says, 'You need to come to the hospital for a blood transfusion.' If they've seen that 'yes, my haemoglobin was very low when I took the test,' they don't need to question it." (Participant #22, nurse with 34 years’ experience) “I think it can be an advantage for [teenagers] as they can also ask questions or comment on things if there's something they... think seems strange or have something they wonder about.” (Participant #116, physician with 38 years’ experience) “If [parents] haven't been present at the visit, they'll know if the child has been prescribed a certain treatment that they're not aware of.” (Participant #104, physiotherapist with 13 years’ experience) Enhanced documentation accuracy “It's nothing that would cause any problem for us, but rather it's good because it's important that it's accurate. And then you have extra pairs of eyes as well, [parents] only have their child's record while we have a lot of EHRs, and of course, there's always a risk of something going wrong.” (Participant #33, nurse with 13 years’ experience) “[Parents] can also see if there's something we've misunderstood in the medical history. Something they perceive that we've written incorrectly, which can then be corrected.” (Participant #116, physician with 38 years’ experience) “There can also be errors when [adolescents] say, "this was in the record, this isn't correct." And that's also good because then we get to see what's misunderstood.” (Participant #118, nurse with 13 years’ experience) Participants reported that ORA helped in improving adolescents’ and parents’ emotional state . For example, they described having immediate access to test results led to an increased sense of control and a sense of safety. Furthermore, it was anticipated that adolescents and parents may feel reassured that they have understood correctly or that agreed-upon procedures have occurred. Participants reported that ORA led to facilitated parental care management , perceiving that the innovation enabled parents to stay involved with their child’s care and provide various types of support. For example, ORA provided busy and worried parents with memory aid for remembering medication and appointments. Reading the record provided an important tool, diminishing the pressure to remember every detail stated during a visit. Participants also mentioned that ORA lessened the burden on the child and allowed parents support their child better, by managing and preparing for appointments. Several participants described that ORA was empowering adolescents to be more involved in their own care. While highlighting that all adolescents did not have the interest to do so, HCPs were positive to having the choice to do so, emphasizing that adolescents had right to their information. Also, their understanding may be improved by not only hearing information, but also reading it afterwards. One nurse stated that “the night is adolescents’ time”, meaning that having ORA allowed adolescents to reflect on their own. Participants also foresaw that ORA facilitated a gradual transition into adult healthcare. Some participants reported that ORA enabled improved partnership and communication . For example, they saw a benefit in that adolescents and parents could go back and read, to prepare questions. Furthermore, they suggested information in the EHR was more accurate than if adolescents would have googled to find something out on their own. One nurse envisioned that adolescents reading results in their EHR would aid their understanding of why treatment was needed. Some also contended that ORA enabled parents to stay involved with the child’s care even if unable to attend an appointment. A few HCPs stated that there was potential for using the EHR as a tool to for example, communicate test results to families, however this was hindered by the inability to know or assume that adolescents and parents would in fact check the EHR. Furthermore, they suggested that ORA relieved parents from having to call the clinic to ask about test results. When parents lost access at the adolescent’s age of 13, HCPs reported that parents began calling to request new test results and that, nurses, in particular, needed to print written information. Participants perceived that ORA contributed to an enhanced documentation clarity and accuracy , as it enabled adolescents and parents to notify HCPs of inaccuracies or HCP misunderstandings that they identified in the EHR. Several HCPs emphasized that errors often consisted of parents misunderstanding the EHR or HCPs having misunderstood, rather than what they called an error. One HCP noted: “No one has the intention to write inaccuracies in the record, but it can still turn out wrong for the patient and the family." [Participant #18, physician with 12 years’ experience]. Perceived downsides of ORA for adolescents, parents, and HCPs HCPs reported five themes of perceived downsides of adolescent and parental ORA for adolescents, parents, and HCPs; Increased emotional distress and confusion, Decreased documentation quality and accuracy, Increased workload, Threatened confidentiality , and Technical portal limitations . For details, see Table 4 . Table 4 Themes identified in interviews in regards to HCPs’ perceived downsides of adolescent and parental ORA for adolescents, parents, and HCPs. Theme Representative quote Increased emotional distress and confusion “That's the case with all patients and not just for children, I think. That it can be a bit scary if you read and google and don't understand everything.” (Participant #06, nurse with 1 year of experience) “Parents sometimes check the X-ray results, I think they rarely do it intentionally, but they haven't really thought about it and they go in and they see something that they wouldn't have wanted to see, or something they don't understand. It can sometimes make things a bit more uncomfortable and so on.” (Participant #18, physician with 12 years’ experience) “With cancer, some parents can become very... they read the records several times a day. [...] They can notice words, like "they wrote this and they wrote that", and they lose control. But they are in shock and they are in crisis, and this can be a way to feel like they have some control in their lives, by reading their child's EHR all the time.” (Participant #104, physiotherapist with 13 years’ experience) “Perhaps [teens] don't want to tell their parents or siblings what they have read because they become worried themselves and don't want to worry their parents.” (Participant #72, physician with 12 years’ experience) Decreased documentation quality and accuracy “The difference now is that one actually has to omit important current information, instead one has to… we have to write on paper notes and try to convey important information between ourselves, which can mean a patient safety risk, that we cannot write things down in the records as one would wish.” (Participant #41, physician with 12 years’ experience) “It can be a bit harder to understand how a nurse… perceived the room. For example, these young children that we admit for food observation, [...] we look at least as much at how the parents are doing. Are the parents reacting to the child's signals, do they seem attached? Are they picking up the child? Like that. And sometimes if you express it... Sometimes it's much harder to clearly convey what you see in the room if you can't use any value-loaded words.” (Participant #18, physician with 12 years’ experience) “I know that sometimes you can ponder a bit about that, and that some hesitate a bit to... to write before they've had a chance to talk, which means that colleagues and... who could potentially benefit from this, get it later as well.” (Participant #116, physician with 38 years’ experience) Increased workload “[Parents] receive news where we can't provide support in the same way, and we are noticing now, it creates a lot of extra work for us in healthcare when we have to take care of this anxiety afterwards. Or they call and ask what it means, what it implies, and so on.” (Participant #41, physician with 12 years’ experience) “They can even sit with their phone while I'm doing my treatment, and comment out loud on what is said in front of the child as well, in front of me and everything. And then they can get upset if something doesn't match.” (Participant #104, physiotherapist with 13 years’ experience) “We have parents who read [the record] all the time, they read every little note the nurses make. And they can look at the time of a note, correct spelling errors or... And you feel very, very observed, and I'm not sure that it leads to doing a better job, instead you spend time thinking about exactly how to phrase things than you might otherwise do.” (Participant #18, physician with 12 years’ experience) “Because these illnesses are so severe, [the parents] are so scared and stressed that they can become angry and aggressive, and even threatening. It doesn't happen very often, but regularly still. It can be tough.” (Participant #72, physician with 12 years’ experience) Threatened confidentiality “Sometimes we have girls who have asked to have their EHR deleted because their parents force them to log in to 1177, while they stand next to them and read.” (Participant #18, physician with 12 years’ experience) “One can very well imagine that parents more or less force themselves into the record through the teenagers.” [Participant #41, physician with 12 years’ experience] “The child might not dare to speak freely with a psychologist or with doctors or other HCPs about things they don't want their parents to read. So it inhibits the children in that way.” (Participant #104, physiotherapist with 13 years’ experience) “There isn't much consideration for the consequences of the information in the EHR, if it's spread, what consequences it might have. One might take screenshots of the EHR and post them on social media and things like that.” (Participant #02, nurse with 23 years’ experience) Technical portal limitations "I had such a misunderstanding just yesterday where I wrote that they should do a kidney examination (“njurundersökning”), and autocorrect wrote 'pleasure examination' (“njutningsundersökning”)." (Participant #118, nurse with 13 years’ experience) Most HCPs described that ORA might lead to an increased emotional distress and confusion among adolescents and parents, such as from not understanding results or the healthcare processes, causing them to worry. One participant described that the simplicity of the information in the EHR may worry parents, who are unaware of decision-making processes involving numerous HCPs and extensive discussion. Several HCPs referred to the “life and death” nature of news communicated to oncology patients as a reason for particular concern in communicating news to adolescents and parents before having the opportunity to explain it. Furthermore, one HCP described a situation where a divorced parent had become distrustful of the other due to information about them related to alcohol abuse, that they could read in the child’s EHR. Some HCPs mentioned that sole access for adolescents may lead to difficult family situations, where the adolescent may not inform the parent about concerning information because of not wanting to worry them. Partly due to concerns about causing distress, participants reported that ORA contributed to a decreased documentation quality and accuracy . HCPs described having to be cautious when writing and being vaguer, which could lead to potential misunderstandings with other HCPs. HCPs mentioned having to omit information, such as sensitive information about either the child or the parent, or hypotheses related to the illness. Physicians reported that omitted information would sometimes be communicated outside of the record, which was cited as a patient safety risk. In some cases, HCPs would wait to release information due to concern of worrying parents, which also led to delay of that information reaching other HCPs. Several participants experienced that ORA caused an increased workload , as worried parents would call in and ask about information they did not understand. Furthermore, HCPs noted that some parents would read the records compulsively and even during the visit, which affected HCPs’ work environment negatively. While finding this behaviour understandable and stating that it was not very common, HCPs found it stressful. Lastly, a few HCPs mentioned the risk of threat to staff. Participants worried that ORA threatened the confidentiality of adolescents and parents. For example, when adolescents had access, parents could access their child’s account by coercion. Some recounted experienced cases of controlling parents reading their adolescents’ EHR without consent. Despite that information perceived as sensitive was not usually directly related to cancer treatment, adolescents with cancer may have questions about sex and alcohol which affect or be affected by the treatment. HCPs held that adolescents may conceal information or refrain from seeking healthcare if worried about their parents accessing the records. Also, some HCPs stated a concern in that adolescents would share information with friends or on social media. Some HCPs described technical portal limitations that created issues. For example, they perceived the available hidden search words to not sufficiently cover the topics that cause a need for concealment. Also, that differences in information availability between regions created inequality for patients. Perceptions of adolescent and parental regulations Five themes were identified with respect to participants’ views on regulations: Uncertainty , Adolescents differ , Balancing parental support and adolescent privacy , “I understand why access is restricted, but…” , and Regulatory changes (see Table 5 ). Table 5 Themes of HCPs’ views on regulations for adolescent and parental ORA. Themes Sub-theme Representative quotes Uncertainty Regulations "I thought [the access gap] was 13–18, actually." (Participant #118, nurse with 13 years’ experience) "I'm still a little, little hesitant [about how it works]. That's why I thought, I'll participate in the interview and learn from you." (Participant #22, nurse with 34 years’ experience) ”I think the parents are quite aware [that they will lose their access]. However, the healthcare system does not always know about it. They have no idea that parents do not have access to the medical record” (Participant #03, nurse with 22 years’ experience) Extension "I initially thought that it was only the parents who could apply for permission to read. I was actually unaware that the children could do it." (Participant #104, physiotherapist with 13 years’ experience) "Parents ask: ‘can I get authorization to access my child's medical record?’ [...] It has probably come up a couple of times. And then I have talked to the secretaries, who I think ... Now I feel uncertain. I think they have said that otherwise you can request the medical record to be printed, because you can at least do that, right?" (Participant #118, nurse with 13 years’ experience) Adolescent and parental access and use "If parents receive an X-ray result before we do, or if children don't want us to write things in the medical record because they don't want their mom and dad to know, it's so darn difficult to know what is shown when you block a record, and what shows when using different search terms." (Participant #18, physician with 12 years’ experience) Adolescents differ Low perceived use and interest "My experience is that [adolescents in general] come here, lie down in bed, get their treatment, and then go home when they're done. They don't want to know, and then it's difficult if they are the ones who should get the information to then pass on, and keep track of 'how long should I take these medicines at home?'" (Participant #02, nurse with 23 years’ experience) “I think the times they log in, that we hear about them logging in, it's more at the parents' request to check’ what time we're supposed to be there’ or ‘how your tests look’, and so on. That maybe it's not so much their own need they're logging in for." (Participant #33, nurse with 13 years’ experience) Depends on factors other than age “Some children are a bit too young to understand what is written in the record.” (Participant #104, physiotherapist with 13 years’ experience) “You're not very mature when you're 13 years old. You don't have much responsibility yourself. But at the same time, some mature much, much earlier than others. So, it's incredibly difficult to pinpoint an exact age.” (Participant #22, nurse with 34 years’ experience) Involvement “I think that they may be more receptive to being involved. Because it's a natural part of growing up to have your phone or iPad or... So the EHR somehow becomes more accessible.” (Participant #118, nurse with 13 years’ experience) “There are some teenagers who keep track of their test results and manage a lot of that themselves. Even if parents are involved too, they are still actively participating in their own care." (Participant #06, nurse with 1 year of experience) “It varies greatly depending on one's level of interest and developmental stage. But I think having the option available can be really beneficial." (Participant #22, nurse with 34 years’ experience) Balancing parental support and adolescent privacy Sick adolescents depend on parents “Even a 17-year-old or a 17.5-year-old who is newly diagnosed almost always becomes dependent on their parent and needs their parent. Then it feels more like they are transferring the responsibility to the parents." (Participant #03, nurse with 22 years’ experience) "We work with the whole family, and I still haven't encountered any teenager who says 'Mom and Dad aren't allowed to see what I'm doing in cancer treatment,' and there one might need to be there to support one’s teenager. Because it's tough if it's only the teenager who has access to those parts." (Participant #22, nurse with 34 years’ experience) Allowing privacy “Some say 'yeah, I don't care either way, you can check.' And some say like 'no, that's mine. Why are you snooping?' So I think it's very different, and people have very different relationships with their parents.” (Participant #118, nurse with 13 years’ experience) “A 13-year-old, a teenager, is already quite vulnerable. If, for example, you are going to some kind of youth clinic or something similar where records are kept anyways, I still think it's somehow positive that you can maintain some anonymity from your parents in that way.” (Participant #81, nurse with 5 years’ experience) Privacy of adolescents with cancer "At the same time, I find it a bit difficult, especially when they are hospitalized for oncological diseases, that they cannot have that type of control or access to their record.” (Participant #81, nurse with 5 years’ experience) “Because I'm thinking, in that case, by [allowing extended access] said that that child’s their privacy is not as high as someone else's. Do you see what I mean?" (Participant #118, nurse with 13 years’ experience) “That older teenagers need to log in because their parents absolutely want to know, we've seen that.” (Participant #41, physician with 12 years’ experience) Controlling parents “For most parents, they could potentially have access for a little longer, and for the parents who can't have it between 13 and 16, maybe they shouldn't have it before 13 either.” (Participant #18, physician with 12 years) “I understand why access is restricted, but…” Hinders care “I think it’s a scandal to be honest. Because it gets incredibly difficult to manage for our families. It depends a little. Those who are undergoing treatment, it gets really hard. Because the parents can’t see and they need to call regarding lab results. They already have their hands full and it gets hard for them.” [Participant #03, nurse with 22 years’ experience] “It's also very strange because then you think, what is it between 13 and 16 that makes it sacred so that no one can access it? Because I mean, if you have a child who gets sick at 12 years and 9 months, then the parents will still want to have an understanding of what's going on. And I mean, what is it that makes it locked during that period? And how does it benefit healthcare that it's closed?” (Participant #118, nurse with 13 years’ experience) Losing access is frustrating for parents "It's often frustrating when they can't access it themselves, because they usually check test results and such. Then they have to ask us instead, and… [...] when they're at home, they might not want to call. So, it's often tough when they don’t have access.” (Participant #06, nurse with 1 year of experience) “Some [parents] ask immediately when it happens: ‘why can’t I see this or that?’ [...] It depends a bit on age; some who are around 14–15 usually have a good handle on things, but those in the middle, around 11–12, transitioning to 13, might be more shocked and perhaps irritated instead." (Participant #81, nurse with 5 years’ experience) Cumbersome application process "Since we have a shortage of places, we relocate the children to other regions, and then the parents need to apply for access there as well. [...] After a while, parents need to fill in four, five forms. And on top of that one has regular work to do, and maybe more children to take care of. But that’s what the law looks like now.” [Participant #02, nurse with 23 years’ experience] “I tell [parents] that it’s not something you fix in fifteen minutes. Because you don’t. It takes weeks, in the cases I've been involved in.” [Participant #03, nurse with 22 years’ experience] Regulatory changes Close access gap “I think there could be shared responsibility between 13 and 16.” (Participant #03, nurse with 22 years’ experience) “I understand the idea that maybe you're not old enough to understand, but if no one... then I think you should have access when you're 14, 15 in that case, when parents no longer have access." (Participant #06, nurse with 1 year of experience) Enhance information and process for extended access “I just find it strange that there isn't more outreach... that there aren't informative brochures available at the hospital, for example. Something like, 'Did you know you can access your medical records?’” (Participant #104, physiotherapist with 13 years’ experience) “But somehow within pediatric oncology, it should still be possible for the head of the home hospital to approve access to the pediatric oncology record at all children's hospitals. […] And now it's a paper form to fill out, and I'm thinking, can we look into digital solutions for the whole process, where parents apply digitally? And then the head of the department approves or rejects it digitally as well.” (Participant #02, nurse with 23 years’ experience) Customized record “I think it would be easier if we could control which things everyone would have access to, rather than controlling different ages and so on. Because then it might get a bit messy to explain as well, like 'no, you're not a mature 13-year-old, you can't have this.'” (Participant #22, nurse with 34 years’ experience) “Sometimes one would wish that there were... well, there are, but... it might be utopian, but that there were different records. One directed towards... between healthcare providers and one directed towards families.” (Participant #03, nurse with 22 years’ experience) Many participants described uncertainty regarding regulations, extension and record availability and ORA use among adolescents and parents. While largely aware of the age limits, HCPs appeared less well-informed about the possibility of access extensions (especially regarding adolescents) and the application procedure. One HCP mentioned that when informed about the policy, the general idea had been to learn details when necessary. While most had not experienced an application for extension, almost all who had experienced it described the application procedure as challenging, and only one participant had personal experience of attempting to apply, and subsequently gave up. Participants described that adolescents differ . They stated that amongst adolescents with cancer, most did not appear to have any interest in reading their records and preferred to depend on their parents. Adolescents rarely asked questions and preferred asking via parents. Exceptions did exist, for example mature adolescents with an interest in tracking their test results. HCPs emphasized that type of health issue likely led to different needs for adolescents to read their records. Some imagined that ORA could provide benefits for adolescents who may be especially receptive due to their digital competence, and suggested informing adolescents more about the EHR. Another emergent theme in relation to regulations was balancing parental support and adolescent privacy . HCPs stated that adolescents have varying needs for privacy, and that ill adolescents “tend to regress” during the illness period and depend on parental support, regardless of age. For these adolescents, it was primarily parents who wanted ORA. Meanwhile, some HCPs were concerned about infringements on the privacy of adolescents with cancer, given parents’ (understandable) concern and interest in their information. A number of HCPs noted that it did not matter whether only the adolescents had access because parents would often ask the adolescent to log in for them to read. In regards to extended access, HCPs held that it should require child consent and be updated every six months/year, as situations can change between age 13–15. A fourth theme was “I understand why access is restricted, but…” . HCPs expressed both confusion and criticism in regards to the gap in access between age 13–15, especially in regards to families of adolescents with cancer. Upon losing access to their child’s records at age 13, HCPs perceived that many parents were confused, frustrated and shocked. Several HCPs reported a need to better inform parents prior to this event. Furthermore, adolescents started receiving notifications via the patient portal at age 16, which was unknown to patients and led to patients missing appointments. Access extension was described as difficult for a number of reasons, such as that parents of children with cancer live in chaos and struggle to submit one application for each unit, which can be many. Lastly, HCPs’ provided a number of suggestions for regulatory change that they perceived would improve ORA for adolescents battling cancer and their parents. Several suggestions from HCPs concerned facilitation of the extension application. More information was needed for parents, and support for digital applications and approval. It was reported that permissions for extended access need renewal every six months or annually, and that the child should be consulted. Considering the significance of life events for ORA needs, some were sceptical of an age-based system. One HCP mentioned that separate records for HCPs and adolescents/parents may prevent issues related to documentation issues. Discussion Summary of findings The study provides insight into pediatric oncology HCPs’ perspectives of ORA for parents and adolescents in Sweden. Our findings demonstrate that most HCPs differed in their views on regulations, but were critical of restricted access between age 13–15 for both parents and adolescents. HCPs see potential in adolescent ORA but do not perceive high use among adolescent with cancer, who tend to depend on parents. While positive about ORA improving parents’ ability to support their child, HCPs were concerned about the quality of the EHR when documenting with consideration of adolescents’ and parents’ privacy. HCPs lack information about regulations to some degree, but mainly about procedures to extend access and what is shown to users. Five themes of benefits were identified: Improving adolescents' and parents' emotional state, Facilitated parental care management, Empowering adolescents, Improved partnership and communication , and Enhanced documentation accuracy. Five themes of downsides were identified: Increased emotional distress and confusion, Decreased documentation quality and accuracy, Increased workload, Threatened confidentiality , and Technical portal limitations . Comparison with prior work This is the first study to examine pediatric HCPs’ perceived benefits and downsides of adolescents’ and parents’ ORA, as well as views of a regulatory framework for pediatric EHRs. A larger proportion of HCPs were positive to parents’ access for children under 13 and the utility of parental access in their work, compared with adolescents’ access. A possible explanation for this is that adolescents with cancer did not appear to be reading their records, thus their access did not affect HCPs. The perception of adolescents as rare users is aligned with a previous US study on pediatric oncology clinicians [ 8 ] and might be accurate, given that provider encouragement among adolescents is commonly low [ 2 ], they often lack knowledge about patient portals [ 29 ] and value normalcy when seriously ill [ 30 ]. Another possible factor could be that adolescents prefer to ask questions via parents [ 31 ] and may lack confidence in clinical environments [ 32 ]. Also, HCPs lacked knowledge about information visibility in the EHR and whether parents and adolescents were reading the records, which prevented using the EHR as a tool of communication. Previous work has identified that compared with other HCPs, a minority of oncologists see ORA as means for communication [ 9 ]. In general, perceived benefits of access often concerned anticipatory effects (such as ability to correct or see test results), while several concerns were experienced by the HCPs, such as modifying documentation or being confronted by worried or confused parents. Thus, the benefits did not affect the HCPs positively, in the way that concerns affected them negatively. This may contribute to low ratings of utility and amotivation to encourage patients to use PAEHRs [ 33 , 34 ]. Despite low perceptions of utility from adolescents’ and parental ORA, HCPs were critical to the access gap. The complications of restricting ORA for parents of seriously ill children has been noted in the literature [ 8 , 16 ]. Possibly due to HCPs’ advocacy for adolescents’ autonomy and privacy, slightly more HCPs were positive about adolescents’ being able to gain earlier access than parents’ prolonged access. Threats to confidentiality related to parental ORA was often described as a reason for HCPs’ difficulties to document sensitive information and subsequent need to omit information from the record. Some HCPs suggested shared access during adolescence, a solution that has been observed as leading to confidentiality concerns. However, attempts have been made at innovative portal functionality, where sensitive information is stored separately and only visible to the adolescent [ 35 ]. Compromised note quality has been previously anticipated in pediatric care [ 36 ] and selective omission within the records to ensure confidentiality has been observed among pediatric providers [ 13 ]. Furthermore, a survey study found that oncologists worry more than non-oncology HCPs about decreased quality of documentation [ 9 ], possibly due to the serious nature of some information. One suggestion was enabling HCPs to choose which aspects of the record should be available to adolescents and parents, which has been suggested in a study on HCPs in mental healthcare [ 37 ]. In their struggle to set age limits, HCPs suggested that access should instead be based on type of care and HCPs should have larger control of what is shown. Other countries have adopted case-by-case approaches, for example, HCPs in Finland assess minors’ decision-making capacity for each care event, and allow those able to consent to parental view of the information [ 38 ]. While allowing larger flexibility, subjective assessments can lead to patient inequality and increased HCP work burden, requiring guidance and resources. Another concern of HCPs was related to impact on work and documentation, including compromised clinician autonomy, a concern that has been raised in the literature [ 1 ]. For example, concerns about confidentiality and rapid release of results have led HCPs to modify their documentation by omitting information, delaying its release, and communicating externally from the EHR. In a previous study, oncology clinicians stated additional strategies to prevent potential harm, such as establishing agreements with radiologists and providing families with anticipatory guidance [ 8 ]. Adjustments such as omitting information from the EHR could lead to risks for patient safety, which was also noted by HCPs in this study, and may even incur medical-legal challenges [ 39 ]. In accordance with prior findings, HCPs also mentioned technological limitations in concealing sensitive information [ 40 ]. Overall, these findings call for portal design that allow concealment of sensitive information from parents and guidance for HCPs to release information while decreasing harm to families. Supporting HCPs in using ORA is critical in order to relieve their concerns and allow for integrating patient portals into care, as a tool to improve partnerships between HCPs, parents, and adolescents. HCP’s lack of knowledge about the application procedure for extended access is notable, as a previous case study identified very low numbers of applications, disproportionate to population size, in the five of Sweden’s 21 regions observed [ 38 ]. Differences in knowledge among HCPs may lead to unequally distributed opportunities of ORA for adolescents and parents. Moreover, the perceived potential for adolescents of ORA led HCPs to suggest a need to better inform adolescents about the possibility of reading their records. As this was primarily suggested by nurses, future work is needed to explore differences in views between physicians and nurses. Strengths and limitations This is the first study to explore pediatric oncology HCPs views and awareness of regulations for adolescent and parental ORA. Furthermore, the findings of two collection methods used reflected each other. Yet, the study is not without limitations. First, the small sample of survey respondents restricts inferences to generalisations about HCPs’ views. Responder bias may also have affected findings: for example, it is possible that those who chose to respond and subsequently participate in an interview were more enthusiastic about ORA, or more sceptical HCPs participated. Participants may also have been impacted by recall bias. Most participants were women and nurses, yet the sample may still be representative since in Sweden, most nurses are women and nursing is the largest healthcare profession [ 41 ]. The survey used was designed by the authors due to a lack of validated questionnaires available for examining views on ORA. Another limitation is that we did not examine adolescents’ and parents’ views and experiences. This was however the aim of a previous study conducted in parallel. An interview guide was followed to improve trustworthiness, and the study was reported according to the COREQ checklist. Conclusion In this study, most pediatric oncology HCPs in Sweden were critical about ORA restrictions among adolescent oncology patients. In contrast, they perceived benefits of ORA primarily with respect to parental access. In addition, the importance of strengthening adolescents’ autonomy was also emphasized by participants. However, most HCPs lacked knowledge about exemptions, information availability and use among adolescents and parents. Uncertainty in addition to concerns about confidentiality and harm was experienced as leading to perceived documentation deterioration. Better understanding about the patient use and integration of ORA within healthcare was requested. Guidance in mitigating anticipated harm may increase HCPs’ perceived utility of patient portals for adolescents and parents. Furthermore, increased flexibility of regulation, facilitation of procedures and functionality to ensure confidentiality is necessary to ensure patient safety and quality of documentation. Abbreviations COREQ: Consolidated criteria for Reporting Qualitative research EHR: electronic health record EU: European Union GDPR: General Data Protection Regulation HCP: healthcare professional ORA: online record access PAEHR: patient-accessible electronic health record US: United States Declarations Ethics approval and consent to participate Ethical approval was granted by the Regional Ethical Review Board in Uppsala, Sweden (EPN 2022/02160). All respondents received study information and provided informed consent. Consent for publication Not applicable. Availability of data and materials The study data are not publicly available due to concerns about confidentiality of a small sample. Quotations and analytical categories are included in the text. Contact the corresponding author to discuss the findings or the analysis. Redacted versions of data are available upon reasonable request. Competing interests The authors declare no competing interests. Funding This study received funding from NordForsk through the funding to Nordic eHealth for Patients: Benchmarking and Developing for the Future, NORDeHEALTH, (Project #100477), the Swedish Research Council for Health, Working Life and Welfare (FORTE) through the funding to Beyond Implementation of eHealth (Project #2020-01229). Authors’ contributions JH conducted the interviews. JH and MH conducted the qualitative analysis. JH wrote the first draft of the manuscript and CB was a major contributor in writing the manuscript. CB, AH, PL, IS, and MH contributed to study design, design of study material, data analysis, and revising the manuscripts. Acknowledgements We would like to thank all healthcare professionals who have responded to the survey and participated in interviews. We are also grateful to healthcare professionals who have assisted in recruitment for the study. Also, we want to acknowledge the healthcare professionals who provided their input on study material. Authors’ information Participatory eHealth and Health Data Research Group, Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden Josefin Hagström, Charlotte Blease, Maria Hägglund MedTech Science & Innovation Centre, Uppsala University Hospital, Uppsala, Sweden Maria Hägglund Digital Psychiatry, Dept of Psychiatry, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA, USA Charlotte Blease Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden Arja Harila Centre for Empirical Research on Information Systems (CERIS), Informatics, School of Business, Örebro University, Örebro, Sweden Isabella Scandurra Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden Päivi Lähteenmäki Department of Pediatric and Adolescent Medicine, Turku University Hospital, Turku, Finland Päivi Lähteenmäki References Blease C, Torous J, Hägglund M. Does Patient Access to Clinical Notes Change Documentation? 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Supplementary Files Appendix1a.pdf Appendix2.pdf Appendix3.pdf Appendix4.pdf Cite Share Download PDF Status: Published Journal Publication published 27 Nov, 2025 Read the published version in BMC Health Services Research → Version 1 posted Editorial decision: Revision requested 11 Mar, 2025 Reviews received at journal 10 Mar, 2025 Reviewers agreed at journal 13 Feb, 2025 Reviewers agreed at journal 13 Feb, 2025 Reviewers agreed at journal 10 Feb, 2025 Reviews received at journal 08 Feb, 2025 Reviewers agreed at journal 06 Feb, 2025 Reviewers agreed at journal 05 Feb, 2025 Reviewers agreed at journal 05 Feb, 2025 Reviewers agreed at journal 21 Aug, 2024 Reviewers invited by journal 16 Aug, 2024 Editor invited by journal 01 Jul, 2024 Editor assigned by journal 01 Jul, 2024 Submission checks completed at journal 01 Jul, 2024 First submitted to journal 28 Jun, 2024 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-4654080","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":329769740,"identity":"3a922955-ad26-46db-8c51-b2da868942a6","order_by":0,"name":"Josefin 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University","correspondingAuthor":false,"prefix":"","firstName":"Charlotte","middleName":"","lastName":"Blease","suffix":""},{"id":329769744,"identity":"e61116bf-bbd2-450c-99c9-e0f66ceb3dbd","order_by":2,"name":"Arja Harila","email":"","orcid":"","institution":"Uppsala University","correspondingAuthor":false,"prefix":"","firstName":"Arja","middleName":"","lastName":"Harila","suffix":""},{"id":329769745,"identity":"e97dbc74-df0a-4e2b-8291-c4d4f0972b24","order_by":3,"name":"Päivi Lähteenmäki","email":"","orcid":"","institution":"University of Turku","correspondingAuthor":false,"prefix":"","firstName":"Päivi","middleName":"","lastName":"Lähteenmäki","suffix":""},{"id":329769746,"identity":"586951ad-40ae-43a4-9f72-061ad21fc5aa","order_by":4,"name":"Isabella Scandurra","email":"","orcid":"","institution":"Örebro University","correspondingAuthor":false,"prefix":"","firstName":"Isabella","middleName":"","lastName":"Scandurra","suffix":""},{"id":329769747,"identity":"0f1cd63f-bfbe-4d36-8116-0e5963e1eab0","order_by":5,"name":"Maria Hägglund","email":"","orcid":"","institution":"Uppsala University","correspondingAuthor":false,"prefix":"","firstName":"Maria","middleName":"","lastName":"Hägglund","suffix":""}],"badges":[],"createdAt":"2024-06-28 10:30:14","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-4654080/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-4654080/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1186/s12913-025-13697-3","type":"published","date":"2025-11-27T15:58:33+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":60942796,"identity":"0d590bd3-52c4-447d-a795-4fd42c9f5122","added_by":"auto","created_at":"2024-07-23 21:56:25","extension":"jpg","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":75616,"visible":true,"origin":"","legend":"\u003cp\u003eSurvey questions included in the study.\u003c/p\u003e","description":"","filename":"1.jpg","url":"https://assets-eu.researchsquare.com/files/rs-4654080/v1/16b2c6b9371163d32a7ac871.jpg"},{"id":60943818,"identity":"d927619a-588f-491b-96f0-d20e002684fe","added_by":"auto","created_at":"2024-07-23 22:04:25","extension":"jpg","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":58094,"visible":true,"origin":"","legend":"\u003cp\u003eHCPs’ views on parental and adolescents’ online record access.\u003c/p\u003e","description":"","filename":"2.jpg","url":"https://assets-eu.researchsquare.com/files/rs-4654080/v1/2d738a2710bb339c293a0878.jpg"},{"id":97179777,"identity":"4b8ac793-3853-408e-a19a-7b1d61b0575f","added_by":"auto","created_at":"2025-12-01 16:16:57","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1235235,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-4654080/v1/9ee72452-a6af-4184-a9b6-f904d1d18cfc.pdf"},{"id":60944594,"identity":"ad3fe3ae-c3c3-4594-930f-39cbcf331b58","added_by":"auto","created_at":"2024-07-23 22:12:25","extension":"pdf","order_by":9,"title":"","display":"","copyAsset":false,"role":"supplement","size":106703,"visible":true,"origin":"","legend":"","description":"","filename":"Appendix1a.pdf","url":"https://assets-eu.researchsquare.com/files/rs-4654080/v1/9e6de6bba2aed86a9c2f1649.pdf"},{"id":60942800,"identity":"65ae68e8-d7bc-4a0a-a4de-069a9baddb19","added_by":"auto","created_at":"2024-07-23 21:56:25","extension":"pdf","order_by":10,"title":"","display":"","copyAsset":false,"role":"supplement","size":369343,"visible":true,"origin":"","legend":"","description":"","filename":"Appendix2.pdf","url":"https://assets-eu.researchsquare.com/files/rs-4654080/v1/621a1dd69898231addb0ab8c.pdf"},{"id":60942797,"identity":"d7873253-b536-4264-99ce-e80e09a555ea","added_by":"auto","created_at":"2024-07-23 21:56:25","extension":"pdf","order_by":11,"title":"","display":"","copyAsset":false,"role":"supplement","size":56450,"visible":true,"origin":"","legend":"","description":"","filename":"Appendix3.pdf","url":"https://assets-eu.researchsquare.com/files/rs-4654080/v1/6b5f6e567bc5bafe0fab44a7.pdf"},{"id":60942801,"identity":"071a9d70-d5e7-45e4-bfe8-2f5b827cbe54","added_by":"auto","created_at":"2024-07-23 21:56:25","extension":"pdf","order_by":12,"title":"","display":"","copyAsset":false,"role":"supplement","size":106414,"visible":true,"origin":"","legend":"","description":"","filename":"Appendix4.pdf","url":"https://assets-eu.researchsquare.com/files/rs-4654080/v1/cae5c9537a571399dee8ff28.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Pediatric oncology healthcare professionals’ attitudes to and awareness of regulations for minors’ and guardians’ online record access: A mixed-methods study in Sweden","fulltext":[{"header":"Introduction","content":"\u003cp\u003eElectronic health records (EHRs) are essential to function as an aide memoir and communication tool among healthcare professionals (HCPs) [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. Currently, providing patients and caregivers with online record access (ORA) via patient portals is becoming increasingly common among healthcare providers internationally. In the European Union (EU), the General Data Protection Regulation (GDPR) provides individuals with the right to check the data about them in registries such as EHRs. A proposal for a European Health Data Space has been launched, which will give patients online access to their EHRs throughout Europe. A growing body of research recognizes unique benefits of ORA among adolescents and parent proxy users, including adolescents\u0026rsquo; supported transition into adult care and improved parental care [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e]. However, ORA in pediatric care remains a controversial topic and scarce attention has been paid to the views and experiences of portal access policies among HCPs working with seriously ill children.\u003c/p\u003e \u003cp\u003eStudies over the last two decades have identified initial provider reluctance to patient ORA that tends to diminish yet prevail to an extent after implementation [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e]. Some HCPs perceive patients\u0026rsquo; access as interfering with the function of the medical record as their work tool [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e], and state that it can contribute to HCP burnout [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e]. Pediatric oncology HCPs\u0026rsquo; views and experiences of ORA have been addressed in one US study, where interviewed physicians and advanced practice providers reported benefits in empowering adolescents and supporting parental care. While anticipating that parents losing access might lead to great inconvenience, they worried about adolescents and parents accessing bad news in the EHR without explanation, and reported changing their documentation as a result [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e]. Among HCPs, oncologists are less likely than non-oncologists to see ORA as a way to improve patient safety, less likely to believe patients will take better care as a result, and more likely to think patients will feel in control [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e]. Oncologists in particular are concerned about how sharing notes with patients will impact documentation practices [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eIn pediatrics, an additional and persisting concern is patient confidentiality breaches and maintaining the privacy of minors\u0026rsquo; information, particularly during adolescence [\u003cspan additionalcitationids=\"CR12\" citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e]. A scoping review identified confidentiality as the main concern among pediatric HCPs and experts [\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e]. The confidentiality issue stems from the challenging balance between parental responsibility and adolescents' increasing desire for independence. While parents are often given full access to their child\u0026rsquo;s records during early childhood, adolescents may desire increased autonomy and privacy. One of the barriers to providing confidential care is limited portal functionality [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e, \u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e]. where HCPs are not equipped with tools to conceal information from adolescents and parents in a satisfactory way [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e].\u003c/p\u003e \u003cp\u003e One strategy aimed at resolving this issue has been to limit adolescents\u0026rsquo; and parents\u0026rsquo; access during adolescence through regulations. Yet, implementation of ORA for parents and adolescents differs globally, in terms of allowance of parental access and the age when the patients can access their records on their own [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e, \u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e]. A variety of access control practices attempting to balance parents\u0026rsquo; and adolescents\u0026rsquo; needs have been adopted, where practices are either based on set age-based access limits or on case-by-case assessment.\u003c/p\u003e\n\u003ch3\u003eStudy aim\u003c/h3\u003e\n\u003cp\u003eUncertainty remains about HCPs\u0026rsquo; views on existing regulations that concern adolescents and parents. Though ORA is an evolving innovation, national patient portals have been accessible for citizens in Sweden and other Nordic countries for more than a decade. The study aimed to investigate, both quantitatively and qualitatively, Swedish pediatric oncology HCPs\u0026rsquo; perceived benefits and downsides of adolescents\u0026rsquo; and parents\u0026rsquo; ORA, as well as their views on and awareness of ORA regulations. The study addresses two research questions:\u003c/p\u003e \u003cp\u003e RQ1: What benefits and downsides do Swedish pediatric oncology HCPs perceive regarding adolescents\u0026rsquo; and parents\u0026rsquo; ORA?\u003c/p\u003e \u003cp\u003eRQ2: What are Swedish pediatric oncology HCPs\u0026rsquo; awareness of and views on the national regulatory framework around parental and adolescent access to minors\u0026rsquo; online records?\u003c/p\u003e"},{"header":"Methods","content":"\u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003eStudy design\u003c/h2\u003e \u003cp\u003eA convergent QUAL-quan mixed-methods approach was adopted based on a belief that quantitative and qualitative data would complement each other [\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e, \u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e]. Mixed-methods can be defined as \u0026ldquo;collection of both qualitative and quantitative methods where data is integrated in the analysis\u0026rdquo; [\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e]. Because the topic has not previously been studied, a survey was used to provide a breadth of data, and interviews were performed to enable a deeper comprehension of the underlying reasoning behind the quantitative findings. Data collection occurred from March 2022 to May 2023 after ethical approval from the Regional Ethical Review Board in Uppsala, Sweden (EPN 2022/02160). The qualitative component is reported according to the Consolidated criteria for Reporting Qualitative research (COREQ) guidelines, see Supplementary Material 1 [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e].\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003eParticipants and setting\u003c/h2\u003e \u003cp\u003e Participants were recruited via mail-out at hospitals and oncology healthcare organizations in 13 of 21 Swedish regions, and information in person at Uppsala Akademiska Hospital in Uppsala, Sweden. HCPs were included who had experience with working with children and adolescents with cancer and who had experience of documenting in the EHRs. Consent was provided by completing the survey. At the end of the survey, participants were able to register interest in participating in an interview and provide their e-mail and/or phone number. Contact information was stored separately from the survey results, ensuring anonymity of the survey. While no incentives were offered for completing the survey, interview participation was rewarded with a gift card of 200 SEK (equivalent to approx. \u0026euro;20).\u003c/p\u003e \u003cp\u003eIn Sweden, where around 300 children are diagnosed with cancer each year [\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e], ORA is advanced and adolescents and parents have access to the PAEHR service 1177 journal via the national patient portal 1177.se. Parents (or legal guardians) have automatic access to their child\u0026rsquo;s record from birth until they turn 13, and at 16 years old, the child themselves gain access. In the years between 13 and 16, neither parent nor child have access to the record. By filling in and submitting a paper form for an assessment by the operations manager, parents can be granted prolonged access or teenagers/children can be granted earlier access. The portal access policy is not based on Swedish law but on common practice within healthcare [\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e], and was set in 2017 by the company managing the web platform [\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e]. The policy has been criticised by parents of ill children, such as cases of cancer [\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e] or severe disability [\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e]. Since before PAEHR implementation, patients and parents have been able to request a physical record copy, which necessitates an individual assessment by the provider whereby the request can be denied. There are also \u0026lsquo;hidden search words\u0026rsquo; that can be used by HCPs to conceal information from patients\u0026rsquo; view, for example \u0026ldquo;Early hypotheses\u0026rdquo;, \u0026ldquo;Intimate partner violence\u0026rdquo;, and \u0026ldquo;Report of concern for a child\u0026rsquo;s welfare\u0026rdquo;.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003eData Collection\u003c/h2\u003e \u003cdiv id=\"Sec7\" class=\"Section3\"\u003e \u003ch2\u003eSurvey\u003c/h2\u003e \u003cp\u003eA survey instrument of 20 questions was developed in Swedish. For this study, 13 questions were included based on the aim: four questions regarding experience, one on views on regulations, three on awareness (with four conditional questions), three on demographics and one on interview participation, see Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e. Questions were optional, except for those related to inclusion criteria and contact information, which were required if the participant expressed interest in an interview. The full survey in Swedish and English can be found in Supplementary Material 2.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003c/div\u003e \u003c/div\u003e\n\u003ch3\u003eInterviews\u003c/h3\u003e\n\u003cp\u003eInterviews were conducted via video conference or telephone. The interview guide was revised based on input from a stakeholder advisory board and 3 informatics administrators. An interview guide was created based on prior work on ORA for adolescents, children, and parents (see Supplementary Material 3) and included similar themes as surveys. The first author conducted the interviews between February 2022 and April 2023 via telephone or video-conferencing software. Interviews were audio-recorded and professionally transcribed. JH is a PhD student in health informatics with experience of conducting studies using qualitative analysis and several completed courses in qualitative research. JH had no prior relationship with any of the study participants.\u003c/p\u003e\n\u003cdiv id=\"Sec9\" class=\"Section2\"\u003e\n \u003ch2\u003eData analysis\u003c/h2\u003e\n \u003cp\u003eDescriptive statistics were used to present quantitative survey data. All but one of interviews were transcribed by an expert, and one was transcribed by the main author. Interview analysis was conducted by JH and MH using the software program NVivo (\u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ewww.qsrinternational.com/nvivo-qualitative-data-analysis-software/home\u003c/span\u003e\u003c/span\u003e). MH is a researcher in health informatics and ORA implementation, with extensive experience in qualitative analysis of interviews. As views on regulations were previously unexplored, we analysed this interview data using thematic content analysis with an inductive approach of the following steps: (1) authors read transcripts to familiarize themselves with the data, (2) data was categorized into codes, (3) codes were grouped into categories and themes, and (4) definitions were refined further through discussions during meetings. Discussions of the findings with all authors led to refinement of the themes. Analysis of perceived benefits and downsides was inspired by previous work [\u003cspan class=\"CitationRef\"\u003e3\u003c/span\u003e, \u003cspan class=\"CitationRef\"\u003e8\u003c/span\u003e].\u003c/p\u003e\n\u003c/div\u003e"},{"header":"Results","content":"\u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003eSample characteristics\u003c/h2\u003e \u003cp\u003eOf 126 HCPs who responded to the survey, 8 (7%) were excluded because they did not meet the inclusion criteria and 21 did not complete the survey (17%). In total, 95 (77%) completed the survey and were included in the study. Most participants were women (83/95, 88%) and worked as nurses (56/95, 59%). 17 selected their profession as \u0026lsquo;other\u0026rsquo;, citing physiotherapist, child specialist, specialist nurse, pediatric nurse, unit manager, and assistant nurse. Survey and interview participants\u0026rsquo; demographic characteristics are shown in Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eSurvey and interview participants\u0026rsquo; demographic characteristics and work experience.\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"4\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCharacteristic\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colspan=\"3\" nameend=\"c4\" namest=\"c2\"\u003e \u003cp\u003eHCP\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eInterviewed (n\u0026thinsp;=\u0026thinsp;13)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eNot interviewed\u0026nbsp;(n\u0026thinsp;=\u0026thinsp;82)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e\u003cb\u003eAll (N\u0026thinsp;=\u0026thinsp;95)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eGender, n (%)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMan\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3 (23.1)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e8 (9.8)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e11 (11.6)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eWoman\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e10 (76.9)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e74 (90.2)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e84 (88.4)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eOther\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e0 (0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e0 (0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e0 (0)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eAge, n (%)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e18\u0026ndash;24 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1 (7.7)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e5 (6.3)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e6 (6.3)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e25\u0026ndash;34 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3 (23.1)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e23 (29.1)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e26 (27.4)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e35\u0026ndash;44 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2 (15.4)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e19 (24.1)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e21 (22.1)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e45\u0026ndash;54 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e5 (38.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e12 (15.2)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e17 (17.9)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e55\u0026ndash;64 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1 (7.7)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e20 (25.3)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e21 (22.1)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e65 years or older\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1 (7.7)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e0 (0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e1 (1.1)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMissing\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e0 (0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3 (5.7)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e3 (3.2)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eYears of practice, n (%)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eOne year or less\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1 (7.7)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e6 (7.3)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e7 (7.4)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e2\u0026ndash;5 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2 (15.4)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e27 (32.9)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e29 (30.5)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e6\u0026ndash;10 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e0 (0.0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e14 (17.1)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e14 (14.7)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e11\u0026ndash;15 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e4 (30.8)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e10 (12.2)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e14 (14.7)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e16\u0026ndash;20 years\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2 (15.4)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e8 (9.8)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e10 (10.5)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e20 years or more\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e4 (30.8)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e17 (20.7)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e21 (22.1)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMissing\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e0 (0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e0 (0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e0 (0)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eProfession, n (%)\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePhysician\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e4 (30.8)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e18 (22.0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e22 (23.2)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNurse\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e8 (61.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e58 (70.7)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e66 (69.5)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eOther\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1 (7.7)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e6\u0026nbsp;(7.3)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e7 (7.4)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eOf 95 HCPs who completed the survey, 19 (20%) agreed to partake in an individual interview. Subsequently, six participants did not partake in interviews due to scheduling difficulties and lack of response, leaving 13 (68.4%) interviewees. A majority of interview participants (8/13, 61.5%) were female, mean age was 45 years old, and mean number of years of experience was 15 years. Interviews (ranging between 20\u0026ndash;79 minutes) were audio-recorded and all but one were transcribed by a professional (one was transcribed by JH). Interview participants\u0026rsquo; characteristics are shown in Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eInterview participants\u0026rsquo; characteristics.\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"6\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c6\" colnum=\"6\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eID\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eGender\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eAge\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eProfession\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c5\"\u003e \u003cp\u003eYears of clinical experience in pediatric oncology\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c6\"\u003e \u003cp\u003eInterview setting\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e02\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e51\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eNurse\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e23\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eVideo\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e03\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e59\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eNurse\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e22\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eVideo\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e06\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e24\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eNurse\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eVideo\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e18\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e42\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003ePhysician\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003ePhone\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e22\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e58\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eNurse\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e34\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eVideo\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e33\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e35\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eNurse\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e13\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eVideo\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e41\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e49\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003ePhysician\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eVideo\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e69\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e30\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eNurse\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003ePhone\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e72\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e48\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003ePhysician\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eVideo\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e81\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e27\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eNurse\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eVideo\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e104\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e51\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003ePhysiotherapist\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e13\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eVideo\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e116\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e68\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003ePhysician\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e38\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eVideo\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e118\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFemale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e \u003cp\u003e41\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eNurse\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c5\"\u003e \u003cp\u003e13\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eVideo\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003eQuantitative results\u003c/h2\u003e \u003cp\u003eVery few (10%) reported the view that the gap in ORA for parents and adolescents during the period between the ages of 13 to 15 was a good thing. Meanwhile, a larger proportion of HCPs (81/95, 85%) were positive about parents\u0026rsquo; access for children under 13 than to adolescents\u0026rsquo; access (63/93, 68%), see Fig.\u0026nbsp;\u003cspan refid=\"Fig2\" class=\"InternalRef\"\u003e2\u003c/span\u003e. About three fourths of HCPs were positive about the option for adolescents (64/83, 77%) and parents (66/89, 74%) to apply for extended access outside of the default. While more than half (49/91, 54%) considered parental access to the adolescent\u0026rsquo;s records as useful for their work, HCPs diverged in their responses regarding the utility of adolescents\u0026rsquo; access, as 29% (25/87) selected the middle option and 38% (33/87) did not agree. See detailed results in Supplementary Material 4.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003eContent in free-text comments were mirrored in interviews, except for one comment stating that medication management became a big issue for parents when losing access.\u003c/p\u003e \u003cp\u003e While 62% (58/94) knew that parents can apply for extended access, three out of five (34/56, 61%) did not know the procedure of application. Even fewer HCPs - only a fifth - were aware that adolescents were able to apply for earlier access (18/94, 19%). Of these, two thirds (12/18, 67%) did not know the procedure for applying. Almost half (26/58, 45%)) of respondents who were aware of the possibility to apply for access extension did not know whether they were authorized to approve such applications.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec13\" class=\"Section2\"\u003e \u003ch2\u003eQualitative results\u003c/h2\u003e \u003cdiv id=\"Sec14\" class=\"Section3\"\u003e \u003ch2\u003ePerceived benefits of ORA for adolescents, parents, and HCPs\u003c/h2\u003e \u003cp\u003eIn general, HCPs experiences differed. While one HCP perceived ORA to cause problems to a degree that it should not be offered, another had worked for 40 years and never heard any parent or adolescent mention the EHR despite ORA being implemented for more than 10 years. HCPs reported five themes relating to perceived benefits of adolescent and parental ORA for adolescents, parents, and HCPs; \u003cem\u003eImproving adolescents' and parents' emotional state, Facilitated parental care management, Empowering adolescents, Improved partnership and communication\u003c/em\u003e and \u003cem\u003eEnhanced documentation accuracy\u003c/em\u003e. For details, see Table\u0026nbsp;\u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e3\u003c/span\u003e.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab3\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eThemes identified in interviews in regards to HCPs\u0026rsquo; perceived benefits of adolescent and parental ORA for adolescents, parents, and HCPs.\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eThemes\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eRepresentative quote\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eImproving adolescents' and parents\u0026rsquo; emotional state\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026ldquo;It's stressful for all parents even if they can read the EHR, but it becomes an increased stress [without it] because then they are on pins and needles, waiting for a doctor to call.\u0026rdquo; (Participant #03, nurse with 22 years\u0026rsquo; experience)\u003c/p\u003e \u003cp\u003e\u0026ldquo;Parents sometimes say, \u0026lsquo;No, but it helps me that I can go in and see the test results myself, then I feel more secure.\u0026rsquo; And some parents make Excel sheets, and then it's easier for them to go in themselves, they think it gives them a sense of control in a different way.\u0026rdquo; (Participant #18, physician with 12 years\u0026rsquo; experience)\u003c/p\u003e \u003cp\u003e\u0026ldquo;In the best case, [parents] feel reassured when they read the EHR and see that the same things they understood verbally. So, it can be very positive to be able to go back after a meeting and see what was planned as well. [...] That you can get some confirmation that certain things that were agreed upon have been carried out.\u0026rdquo; (Participant #72, physician with 12 years\u0026rsquo; experience)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFacilitated parental care management\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026ldquo;There is chaos in the families that come to us. It is difficult to keep track of everything, \u0026lsquo;when is the next treatment? What was said?\u0026rsquo; Both parents may not have been present at the hospital to get the information verbally.\u0026rdquo; (Participant #02, nurse with 23 years\u0026rsquo; experience)\u003c/p\u003e \u003cp\u003e\u0026ldquo;A child experiencing a life crisis when they're still young and perhaps shouldn't have to deal with those life crises, I think it's good that [parents] can be there as a support and be able to access medical records to help them, for example, to remember when they have treatments and so on.\u0026rdquo; (Participant #81, nurse with 5 years\u0026rsquo; experience)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eEmpowering adolescents\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026ldquo;That you can take own initiative and go in and check things if you have questions, instead of accepting it or turn to mom or dad [...]. That you, yeah, can do some things by yourself.\u0026rdquo; (Participant #69, nurse with 6 years\u0026rsquo; experience)\u003c/p\u003e \u003cp\u003e\u0026ldquo;Sometimes the teens themselves are very competent and are undergoing a sort of continuous therapy where one is not at risk of big surprises, and where they can feel that they can gradually take responsibility for their illness. If you are 17 and a half and maybe are transitioning from child clinic to an adult clinic, it\u0026rsquo;s good that one has been able to practice.\u0026rdquo; (Participant #72, physician with 12 years\u0026rsquo; experience)\u003c/p\u003e \u003cp\u003e\u0026ldquo;I don't think [teens] always care so much about the conversations they have with the doctor in person during the day with their parents present, but I think sometimes they may need to be undisturbed when they want to be.\u0026rdquo; (Participant #118, nurse with 13 years\u0026rsquo; experience)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eImproved partnership and communication\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026ldquo;We are only two people, so we don't always answer right away, sometimes it's the answering machine, and it takes a bit of time before we call back, and often they want to know the test results right away when they call the first time. And then it's quicker for them to just log in and look.\u0026rdquo; (Participant #33, nurse with 13 years\u0026rsquo; experience)\u003c/p\u003e \u003cp\u003e\"Even though [adolescents] are not the ones making decisions, they might have understanding when the healthcare team calls and says, 'You need to come to the hospital for a blood transfusion.' If they've seen that 'yes, my haemoglobin was very low when I took the test,' they don't need to question it.\" (Participant #22, nurse with 34 years\u0026rsquo; experience)\u003c/p\u003e \u003cp\u003e\u0026ldquo;I think it can be an advantage for [teenagers] as they can also ask questions or comment on things if there's something they... think seems strange or have something they wonder about.\u0026rdquo; (Participant #116, physician with 38 years\u0026rsquo; experience)\u003c/p\u003e \u003cp\u003e\u0026ldquo;If [parents] haven't been present at the visit, they'll know if the child has been prescribed a certain treatment that they're not aware of.\u0026rdquo; (Participant #104, physiotherapist with 13 years\u0026rsquo; experience)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eEnhanced documentation accuracy\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026ldquo;It's nothing that would cause any problem for us, but rather it's good because it's important that it's accurate. And then you have extra pairs of eyes as well, [parents] only have their child's record while we have a lot of EHRs, and of course, there's always a risk of something going wrong.\u0026rdquo; (Participant #33, nurse with 13 years\u0026rsquo; experience)\u003c/p\u003e \u003cp\u003e\u0026ldquo;[Parents] can also see if there's something we've misunderstood in the medical history. Something they perceive that we've written incorrectly, which can then be corrected.\u0026rdquo; (Participant #116, physician with 38 years\u0026rsquo; experience)\u003c/p\u003e \u003cp\u003e\u0026ldquo;There can also be errors when [adolescents] say, \"this was in the record, this isn't correct.\" And that's also good because then we get to see what's misunderstood.\u0026rdquo; (Participant #118, nurse with 13 years\u0026rsquo; experience)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eParticipants reported that ORA helped in \u003cem\u003eimproving adolescents\u0026rsquo; and parents\u0026rsquo; emotional state\u003c/em\u003e. For example, they described having immediate access to test results led to an increased sense of control and a sense of safety. Furthermore, it was anticipated that adolescents and parents may feel reassured that they have understood correctly or that agreed-upon procedures have occurred.\u003c/p\u003e \u003cp\u003eParticipants reported that ORA led to \u003cem\u003efacilitated parental care management\u003c/em\u003e, perceiving that the innovation enabled parents to stay involved with their child\u0026rsquo;s care and provide various types of support. For example, ORA provided busy and worried parents with memory aid for remembering medication and appointments. Reading the record provided an important tool, diminishing the pressure to remember every detail stated during a visit. Participants also mentioned that ORA lessened the burden on the child and allowed parents support their child better, by managing and preparing for appointments.\u003c/p\u003e \u003cp\u003eSeveral participants described that ORA was \u003cem\u003eempowering adolescents\u003c/em\u003e to be more involved in their own care. While highlighting that all adolescents did not have the interest to do so, HCPs were positive to having the choice to do so, emphasizing that adolescents had right to their information. Also, their understanding may be improved by not only hearing information, but also reading it afterwards. One nurse stated that \u0026ldquo;the night is adolescents\u0026rsquo; time\u0026rdquo;, meaning that having ORA allowed adolescents to reflect on their own. Participants also foresaw that ORA facilitated a gradual transition into adult healthcare.\u003c/p\u003e \u003cp\u003eSome participants reported that ORA enabled \u003cem\u003eimproved partnership and communication\u003c/em\u003e. For example, they saw a benefit in that adolescents and parents could go back and read, to prepare questions. Furthermore, they suggested information in the EHR was more accurate than if adolescents would have googled to find something out on their own. One nurse envisioned that adolescents reading results in their EHR would aid their understanding of why treatment was needed. Some also contended that ORA enabled parents to stay involved with the child\u0026rsquo;s care even if unable to attend an appointment. A few HCPs stated that there was potential for using the EHR as a tool to for example, communicate test results to families, however this was hindered by the inability to know or assume that adolescents and parents would in fact check the EHR. Furthermore, they suggested that ORA relieved parents from having to call the clinic to ask about test results. When parents lost access at the adolescent\u0026rsquo;s age of 13, HCPs reported that parents began calling to request new test results and that, nurses, in particular, needed to print written information.\u003c/p\u003e \u003cp\u003eParticipants perceived that ORA contributed to an \u003cem\u003eenhanced documentation clarity and accuracy\u003c/em\u003e, as it enabled adolescents and parents to notify HCPs of inaccuracies or HCP misunderstandings that they identified in the EHR. Several HCPs emphasized that errors often consisted of parents misunderstanding the EHR or HCPs having misunderstood, rather than what they called an error. One HCP noted: \u0026ldquo;No one has the intention to write inaccuracies in the record, but it can still turn out wrong for the patient and the family.\" [Participant #18, physician with 12 years\u0026rsquo; experience].\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec15\" class=\"Section2\"\u003e \u003ch2\u003ePerceived downsides of ORA for adolescents, parents, and HCPs\u003c/h2\u003e \u003cp\u003eHCPs reported five themes of perceived downsides of adolescent and parental ORA for adolescents, parents, and HCPs; \u003cem\u003eIncreased emotional distress and confusion, Decreased documentation quality and accuracy, Increased workload, Threatened confidentiality\u003c/em\u003e, and \u003cem\u003eTechnical portal limitations\u003c/em\u003e. For details, see Table\u0026nbsp;\u003cspan refid=\"Tab4\" class=\"InternalRef\"\u003e4\u003c/span\u003e.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab4\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 4\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eThemes identified in interviews in regards to HCPs\u0026rsquo; perceived downsides of adolescent and parental ORA for adolescents, parents, and HCPs.\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTheme\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eRepresentative quote\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eIncreased emotional distress and confusion\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026ldquo;That's the case with all patients and not just for children, I think. That it can be a bit scary if you read and google and don't understand everything.\u0026rdquo; (Participant #06, nurse with 1 year of experience)\u003c/p\u003e \u003cp\u003e\u0026ldquo;Parents sometimes check the X-ray results, I think they rarely do it intentionally, but they haven't really thought about it and they go in and they see something that they wouldn't have wanted to see, or something they don't understand. It can sometimes make things a bit more uncomfortable and so on.\u0026rdquo; (Participant #18, physician with 12 years\u0026rsquo; experience)\u003c/p\u003e \u003cp\u003e\u0026ldquo;With cancer, some parents can become very... they read the records several times a day. [...] They can notice words, like \"they wrote this and they wrote that\", and they lose control. But they are in shock and they are in crisis, and this can be a way to feel like they have some control in their lives, by reading their child's EHR all the time.\u0026rdquo; (Participant #104, physiotherapist with 13 years\u0026rsquo; experience)\u003c/p\u003e \u003cp\u003e\u0026ldquo;Perhaps [teens] don't want to tell their parents or siblings what they have read because they become worried themselves and don't want to worry their parents.\u0026rdquo; (Participant #72, physician with 12 years\u0026rsquo; experience)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDecreased documentation quality and accuracy\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026ldquo;The difference now is that one actually has to omit important current information, instead one has to\u0026hellip; we have to write on paper notes and try to convey important information between ourselves, which can mean a patient safety risk, that we cannot write things down in the records as one would wish.\u0026rdquo; (Participant #41, physician with 12 years\u0026rsquo; experience)\u003c/p\u003e \u003cp\u003e\u0026ldquo;It can be a bit harder to understand how a nurse\u0026hellip; perceived the room. For example, these young children that we admit for food observation, [...] we look at least as much at how the parents are doing. Are the parents reacting to the child's signals, do they seem attached? Are they picking up the child? Like that. And sometimes if you express it... Sometimes it's much harder to clearly convey what you see in the room if you can't use any value-loaded words.\u0026rdquo; (Participant #18, physician with 12 years\u0026rsquo; experience)\u003c/p\u003e \u003cp\u003e\u0026ldquo;I know that sometimes you can ponder a bit about that, and that some hesitate a bit to... to write before they've had a chance to talk, which means that colleagues and... who could potentially benefit from this, get it later as well.\u0026rdquo; (Participant #116, physician with 38 years\u0026rsquo; experience)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eIncreased workload\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026ldquo;[Parents] receive news where we can't provide support in the same way, and we are noticing now, it creates a lot of extra work for us in healthcare when we have to take care of this anxiety afterwards. Or they call and ask what it means, what it implies, and so on.\u0026rdquo; (Participant #41, physician with 12 years\u0026rsquo; experience)\u003c/p\u003e \u003cp\u003e\u0026ldquo;They can even sit with their phone while I'm doing my treatment, and comment out loud on what is said in front of the child as well, in front of me and everything. And then they can get upset if something doesn't match.\u0026rdquo; (Participant #104, physiotherapist with 13 years\u0026rsquo; experience)\u003c/p\u003e \u003cp\u003e\u0026ldquo;We have parents who read [the record] all the time, they read every little note the nurses make. And they can look at the time of a note, correct spelling errors or... And you feel very, very observed, and I'm not sure that it leads to doing a better job, instead you spend time thinking about exactly how to phrase things than you might otherwise do.\u0026rdquo; (Participant #18, physician with 12 years\u0026rsquo; experience)\u003c/p\u003e \u003cp\u003e\u0026ldquo;Because these illnesses are so severe, [the parents] are so scared and stressed that they can become angry and aggressive, and even threatening. It doesn't happen very often, but regularly still. It can be tough.\u0026rdquo; (Participant #72, physician with 12 years\u0026rsquo; experience)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eThreatened confidentiality\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u0026ldquo;Sometimes we have girls who have asked to have their EHR deleted because their parents force them to log in to 1177, while they stand next to them and read.\u0026rdquo; (Participant #18, physician with 12 years\u0026rsquo; experience)\u003c/p\u003e \u003cp\u003e\u0026ldquo;One can very well imagine that parents more or less force themselves into the record through the teenagers.\u0026rdquo; [Participant #41, physician with 12 years\u0026rsquo; experience]\u003c/p\u003e \u003cp\u003e\u0026ldquo;The child might not dare to speak freely with a psychologist or with doctors or other HCPs about things they don't want their parents to read. So it inhibits the children in that way.\u0026rdquo; (Participant #104, physiotherapist with 13 years\u0026rsquo; experience)\u003c/p\u003e \u003cp\u003e\u0026ldquo;There isn't much consideration for the consequences of the information in the EHR, if it's spread, what consequences it might have. One might take screenshots of the EHR and post them on social media and things like that.\u0026rdquo; (Participant #02, nurse with 23 years\u0026rsquo; experience)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTechnical portal limitations\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\"I had such a misunderstanding just yesterday where I wrote that they should do a kidney examination (\u0026ldquo;njurunders\u0026ouml;kning\u0026rdquo;), and autocorrect wrote 'pleasure examination' (\u0026ldquo;njutningsunders\u0026ouml;kning\u0026rdquo;).\" (Participant #118, nurse with 13 years\u0026rsquo; experience)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eMost HCPs described that ORA might lead to an \u003cem\u003eincreased emotional distress and confusion\u003c/em\u003e among adolescents and parents, such as from not understanding results or the healthcare processes, causing them to worry. One participant described that the simplicity of the information in the EHR may worry parents, who are unaware of decision-making processes involving numerous HCPs and extensive discussion. Several HCPs referred to the \u0026ldquo;life and death\u0026rdquo; nature of news communicated to oncology patients as a reason for particular concern in communicating news to adolescents and parents before having the opportunity to explain it. Furthermore, one HCP described a situation where a divorced parent had become distrustful of the other due to information about them related to alcohol abuse, that they could read in the child\u0026rsquo;s EHR. Some HCPs mentioned that sole access for adolescents may lead to difficult family situations, where the adolescent may not inform the parent about concerning information because of not wanting to worry them.\u003c/p\u003e \u003cp\u003ePartly due to concerns about causing distress, participants reported that ORA contributed to a \u003cem\u003edecreased documentation quality and accuracy\u003c/em\u003e. HCPs described having to be cautious when writing and being vaguer, which could lead to potential misunderstandings with other HCPs. HCPs mentioned having to omit information, such as sensitive information about either the child or the parent, or hypotheses related to the illness. Physicians reported that omitted information would sometimes be communicated outside of the record, which was cited as a patient safety risk. In some cases, HCPs would wait to release information due to concern of worrying parents, which also led to delay of that information reaching other HCPs.\u003c/p\u003e \u003cp\u003eSeveral participants experienced that ORA caused an \u003cem\u003eincreased workload\u003c/em\u003e, as worried parents would call in and ask about information they did not understand. Furthermore, HCPs noted that some parents would read the records compulsively and even during the visit, which affected HCPs\u0026rsquo; work environment negatively. While finding this behaviour understandable and stating that it was not very common, HCPs found it stressful. Lastly, a few HCPs mentioned the risk of threat to staff.\u003c/p\u003e \u003cp\u003eParticipants worried that ORA \u003cem\u003ethreatened the confidentiality\u003c/em\u003e of adolescents and parents. For example, when adolescents had access, parents could access their child\u0026rsquo;s account by coercion. Some recounted experienced cases of controlling parents reading their adolescents\u0026rsquo; EHR without consent. Despite that information perceived as sensitive was not usually directly related to cancer treatment, adolescents with cancer may have questions about sex and alcohol which affect or be affected by the treatment. HCPs held that adolescents may conceal information or refrain from seeking healthcare if worried about their parents accessing the records. Also, some HCPs stated a concern in that adolescents would share information with friends or on social media.\u003c/p\u003e \u003cp\u003eSome HCPs described \u003cem\u003etechnical portal limitations\u003c/em\u003e that created issues. For example, they perceived the available hidden search words to not sufficiently cover the topics that cause a need for concealment. Also, that differences in information availability between regions created inequality for patients.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec16\" class=\"Section2\"\u003e \u003ch2\u003ePerceptions of adolescent and parental regulations\u003c/h2\u003e \u003cp\u003eFive themes were identified with respect to participants\u0026rsquo; views on regulations: \u003cem\u003eUncertainty\u003c/em\u003e, \u003cem\u003eAdolescents differ\u003c/em\u003e, \u003cem\u003eBalancing parental support and adolescent privacy\u003c/em\u003e, \u003cem\u003e\u0026ldquo;I understand why access is restricted, but\u0026hellip;\u0026rdquo;\u003c/em\u003e, and \u003cem\u003eRegulatory changes\u003c/em\u003e (see Table\u0026nbsp;\u003cspan refid=\"Tab5\" class=\"InternalRef\"\u003e5\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab5\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 5\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eThemes of HCPs\u0026rsquo; views on regulations for adolescent and parental ORA.\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eThemes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eSub-theme\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eRepresentative quotes\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"2\" rowspan=\"3\"\u003e \u003cp\u003eUncertainty\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eRegulations\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\"I thought [the access gap] was 13\u0026ndash;18, actually.\" (Participant #118, nurse with 13 years\u0026rsquo; experience)\u003c/p\u003e \u003cp\u003e\"I'm still a little, little hesitant [about how it works]. That's why I thought, I'll participate in the interview and learn from you.\" (Participant #22, nurse with 34 years\u0026rsquo; experience)\u003c/p\u003e \u003cp\u003e\u0026rdquo;I think the parents are quite aware [that they will lose their access]. However, the healthcare system does not always know about it. They have no idea that parents do not have access to the medical record\u0026rdquo; (Participant #03, nurse with 22 years\u0026rsquo; experience)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eExtension\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\"I initially thought that it was only the parents who could apply for permission to read. I was actually unaware that the children could do it.\" (Participant #104, physiotherapist with 13 years\u0026rsquo; experience)\u003c/p\u003e \u003cp\u003e\"Parents ask: \u0026lsquo;can I get authorization to access my child's medical record?\u0026rsquo; [...] It has probably come up a couple of times. And then I have talked to the secretaries, who I think ... Now I feel uncertain. I think they have said that otherwise you can request the medical record to be printed, because you can at least do that, right?\" (Participant #118, nurse with 13 years\u0026rsquo; experience)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAdolescent and parental access and use\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\"If parents receive an X-ray result before we do, or if children don't want us to write things in the medical record because they don't want their mom and dad to know, it's so darn difficult to know what is shown when you block a record, and what shows when using different search terms.\" (Participant #18, physician with 12 years\u0026rsquo; experience)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"2\" rowspan=\"3\"\u003e \u003cp\u003eAdolescents differ\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eLow perceived use and interest\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\"My experience is that [adolescents in general] come here, lie down in bed, get their treatment, and then go home when they're done. They don't want to know, and then it's difficult if they are the ones who should get the information to then pass on, and keep track of 'how long should I take these medicines at home?'\" (Participant #02, nurse with 23 years\u0026rsquo; experience)\u003c/p\u003e \u003cp\u003e\u0026ldquo;I think the times they log in, that we hear about them logging in, it's more at the parents' request to check\u0026rsquo; what time we're supposed to be there\u0026rsquo; or \u0026lsquo;how your tests look\u0026rsquo;, and so on. That maybe it's not so much their own need they're logging in for.\" (Participant #33, nurse with 13 years\u0026rsquo; experience)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eDepends on factors other than age\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u0026ldquo;Some children are a bit too young to understand what is written in the record.\u0026rdquo;\u0026nbsp;(Participant #104, physiotherapist with 13 years\u0026rsquo; experience)\u003c/p\u003e \u003cp\u003e\u0026ldquo;You're not very mature when you're 13 years old. You don't have much responsibility yourself. But at the same time, some mature much, much earlier than others. So, it's incredibly difficult to pinpoint an exact age.\u0026rdquo; (Participant #22, nurse with 34 years\u0026rsquo; experience)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eInvolvement\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u0026ldquo;I think that they may be more receptive to being involved. Because it's a natural part of growing up to have your phone or iPad or... So the EHR somehow becomes more accessible.\u0026rdquo; (Participant #118, nurse with 13 years\u0026rsquo; experience)\u003c/p\u003e \u003cp\u003e\u0026ldquo;There are some teenagers who keep track of their test results and manage a lot of that themselves. Even if parents are involved too, they are still actively participating in their own care.\" (Participant #06, nurse with 1 year of experience)\u003c/p\u003e \u003cp\u003e\u0026ldquo;It varies greatly depending on one's level of interest and developmental stage. But I think having the option available can be really beneficial.\" (Participant #22, nurse with 34 years\u0026rsquo; experience)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"3\" rowspan=\"4\"\u003e \u003cp\u003eBalancing parental support and adolescent privacy\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eSick adolescents depend on parents\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u0026ldquo;Even a 17-year-old or a 17.5-year-old who is newly diagnosed almost always becomes dependent on their parent and needs their parent. Then it feels more like they are transferring the responsibility to the parents.\" (Participant #03, nurse with 22 years\u0026rsquo; experience)\u003c/p\u003e \u003cp\u003e\"We work with the whole family, and I still haven't encountered any teenager who says 'Mom and Dad aren't allowed to see what I'm doing in cancer treatment,' and there one might need to be there to support one\u0026rsquo;s teenager. Because it's tough if it's only the teenager who has access to those parts.\" (Participant #22, nurse with 34 years\u0026rsquo; experience)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAllowing privacy\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u0026ldquo;Some say 'yeah, I don't care either way, you can check.' And some say like 'no, that's mine. Why are you snooping?' So I think it's very different, and people have very different relationships with their parents.\u0026rdquo; (Participant #118, nurse with 13 years\u0026rsquo; experience)\u003c/p\u003e \u003cp\u003e\u0026ldquo;A 13-year-old, a teenager, is already quite vulnerable. If, for example, you are going to some kind of youth clinic or something similar where records are kept anyways, I still think it's somehow positive that you can maintain some anonymity from your parents in that way.\u0026rdquo; (Participant #81, nurse with 5 years\u0026rsquo; experience)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePrivacy of adolescents with cancer\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\"At the same time, I find it a bit difficult, especially when they are hospitalized for oncological diseases, that they cannot have that type of control or access to their record.\u0026rdquo; (Participant #81, nurse with 5 years\u0026rsquo; experience)\u003c/p\u003e \u003cp\u003e\u0026ldquo;Because I'm thinking, in that case, by [allowing extended access] said that that child\u0026rsquo;s their privacy is not as high as someone else's. Do you see what I mean?\" (Participant #118, nurse with 13 years\u0026rsquo; experience)\u003c/p\u003e \u003cp\u003e\u0026ldquo;That older teenagers need to log in because their parents absolutely want to know, we've seen that.\u0026rdquo; (Participant #41, physician with 12 years\u0026rsquo; experience)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eControlling parents\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u0026ldquo;For most parents, they could potentially have access for a little longer, and for the parents who can't have it between 13 and 16, maybe they shouldn't have it before 13 either.\u0026rdquo; (Participant #18, physician with 12 years)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"2\" rowspan=\"3\"\u003e \u003cp\u003e\u0026ldquo;I understand why access is restricted, but\u0026hellip;\u0026rdquo;\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eHinders care\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u0026ldquo;I think it\u0026rsquo;s a scandal to be honest. Because it gets incredibly difficult to manage for our families. It depends a little. Those who are undergoing treatment, it gets really hard. Because the parents can\u0026rsquo;t see and they need to call regarding lab results. They already have their hands full and it gets hard for them.\u0026rdquo; [Participant #03, nurse with 22 years\u0026rsquo; experience]\u003c/p\u003e \u003cp\u003e\u0026ldquo;It's also very strange because then you think, what is it between 13 and 16 that makes it sacred so that no one can access it? Because I mean, if you have a child who gets sick at 12 years and 9 months, then the parents will still want to have an understanding of what's going on. And I mean, what is it that makes it locked during that period? And how does it benefit healthcare that it's closed?\u0026rdquo; (Participant #118, nurse with 13 years\u0026rsquo; experience)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eLosing access is frustrating for parents\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\"It's often frustrating when they can't access it themselves, because they usually check test results and such. Then they have to ask us instead, and\u0026hellip; [...] when they're at home, they might not want to call. So, it's often tough when they don\u0026rsquo;t have access.\u0026rdquo; (Participant #06, nurse with 1 year of experience)\u003c/p\u003e \u003cp\u003e\u0026ldquo;Some [parents] ask immediately when it happens: \u0026lsquo;why can\u0026rsquo;t I see this or that?\u0026rsquo; [...] It depends a bit on age; some who are around 14\u0026ndash;15 usually have a good handle on things, but those in the middle, around 11\u0026ndash;12, transitioning to 13, might be more shocked and perhaps irritated instead.\" (Participant #81, nurse with 5 years\u0026rsquo; experience)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eCumbersome application process\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\"Since we have a shortage of places, we relocate the children to other regions, and then the parents need to apply for access there as well. [...] After a while, parents need to fill in four, five forms. And on top of that one has regular work to do, and maybe more children to take care of. But that\u0026rsquo;s what the law looks like now.\u0026rdquo; [Participant #02, nurse with 23 years\u0026rsquo; experience]\u003c/p\u003e \u003cp\u003e\u0026ldquo;I tell [parents] that it\u0026rsquo;s not something you fix in fifteen minutes. Because you don\u0026rsquo;t. It takes weeks, in the cases I've been involved in.\u0026rdquo; [Participant #03, nurse with 22 years\u0026rsquo; experience]\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"2\" rowspan=\"3\"\u003e \u003cp\u003eRegulatory changes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eClose access gap\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u0026ldquo;I think there could be shared responsibility between 13 and 16.\u0026rdquo; (Participant #03, nurse with 22 years\u0026rsquo; experience)\u003c/p\u003e \u003cp\u003e\u0026ldquo;I understand the idea that maybe you're not old enough to understand, but if no one... then I think you should have access when you're 14, 15 in that case, when parents no longer have access.\" (Participant #06, nurse with 1 year of experience)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eEnhance information and process for extended access\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u0026ldquo;I just find it strange that there isn't more outreach... that there aren't informative brochures available at the hospital, for example. Something like, 'Did you know you can access your medical records?\u0026rsquo;\u0026rdquo; (Participant #104, physiotherapist with 13 years\u0026rsquo; experience)\u003c/p\u003e \u003cp\u003e\u0026ldquo;But somehow within pediatric oncology, it should still be possible for the head of the home hospital to approve access to the pediatric oncology record at all children's hospitals. [\u0026hellip;] And now it's a paper form to fill out, and I'm thinking, can we look into digital solutions for the whole process, where parents apply digitally? And then the head of the department approves or rejects it digitally as well.\u0026rdquo; (Participant #02, nurse with 23 years\u0026rsquo; experience)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eCustomized record\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u0026ldquo;I think it would be easier if we could control which things everyone would have access to, rather than controlling different ages and so on. Because then it might get a bit messy to explain as well, like 'no, you're not a mature 13-year-old, you can't have this.'\u0026rdquo; (Participant #22, nurse with 34 years\u0026rsquo; experience)\u003c/p\u003e \u003cp\u003e\u0026ldquo;Sometimes one would wish that there were... well, there are, but... it might be utopian, but that there were different records. One directed towards... between healthcare providers and one directed towards families.\u0026rdquo; (Participant #03, nurse with 22 years\u0026rsquo; experience)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eMany participants described \u003cem\u003euncertainty\u003c/em\u003e regarding regulations, extension and record availability and ORA use among adolescents and parents. While largely aware of the age limits, HCPs appeared less well-informed about the possibility of access extensions (especially regarding adolescents) and the application procedure. One HCP mentioned that when informed about the policy, the general idea had been to learn details when necessary. While most had not experienced an application for extension, almost all who had experienced it described the application procedure as challenging, and only one participant had personal experience of attempting to apply, and subsequently gave up.\u003c/p\u003e \u003cp\u003eParticipants described that \u003cem\u003eadolescents differ\u003c/em\u003e. They stated that amongst adolescents with cancer, most did not appear to have any interest in reading their records and preferred to depend on their parents. Adolescents rarely asked questions and preferred asking via parents. Exceptions did exist, for example mature adolescents with an interest in tracking their test results. HCPs emphasized that type of health issue likely led to different needs for adolescents to read their records. Some imagined that ORA could provide benefits for adolescents who may be especially receptive due to their digital competence, and suggested informing adolescents more about the EHR.\u003c/p\u003e \u003cp\u003eAnother emergent theme in relation to regulations was \u003cem\u003ebalancing parental support and adolescent privacy\u003c/em\u003e. HCPs stated that adolescents have varying needs for privacy, and that ill adolescents \u0026ldquo;tend to regress\u0026rdquo; during the illness period and depend on parental support, regardless of age. For these adolescents, it was primarily parents who wanted ORA. Meanwhile, some HCPs were concerned about infringements on the privacy of adolescents with cancer, given parents\u0026rsquo; (understandable) concern and interest in their information. A number of HCPs noted that it did not matter whether only the adolescents had access because parents would often ask the adolescent to log in for them to read. In regards to extended access, HCPs held that it should require child consent and be updated every six months/year, as situations can change between age 13\u0026ndash;15.\u003c/p\u003e \u003cp\u003eA fourth theme was \u003cem\u003e\u0026ldquo;I understand why access is restricted, but\u0026hellip;\u0026rdquo;\u003c/em\u003e. HCPs expressed both confusion and criticism in regards to the gap in access between age 13\u0026ndash;15, especially in regards to families of adolescents with cancer. Upon losing access to their child\u0026rsquo;s records at age 13, HCPs perceived that many parents were confused, frustrated and shocked. Several HCPs reported a need to better inform parents prior to this event. Furthermore, adolescents started receiving notifications via the patient portal at age 16, which was unknown to patients and led to patients missing appointments. Access extension was described as difficult for a number of reasons, such as that parents of children with cancer live in chaos and struggle to submit one application for each unit, which can be many.\u003c/p\u003e \u003cp\u003eLastly, HCPs\u0026rsquo; provided a number of suggestions for \u003cem\u003eregulatory change\u003c/em\u003e that they perceived would improve ORA for adolescents battling cancer and their parents. Several suggestions from HCPs concerned facilitation of the extension application. More information was needed for parents, and support for digital applications and approval. It was reported that permissions for extended access need renewal every six months or annually, and that the child should be consulted. Considering the significance of life events for ORA needs, some were sceptical of an age-based system. One HCP mentioned that separate records for HCPs and adolescents/parents may prevent issues related to documentation issues.\u003c/p\u003e \u003c/div\u003e"},{"header":"Discussion","content":"\u003cdiv id=\"Sec18\" class=\"Section2\"\u003e \u003ch2\u003eSummary of findings\u003c/h2\u003e \u003cp\u003e The study provides insight into pediatric oncology HCPs\u0026rsquo; perspectives of ORA for parents and adolescents in Sweden. Our findings demonstrate that most HCPs differed in their views on regulations, but were critical of restricted access between age 13\u0026ndash;15 for both parents and adolescents. HCPs see potential in adolescent ORA but do not perceive high use among adolescent with cancer, who tend to depend on parents. While positive about ORA improving parents\u0026rsquo; ability to support their child, HCPs were concerned about the quality of the EHR when documenting with consideration of adolescents\u0026rsquo; and parents\u0026rsquo; privacy. HCPs lack information about regulations to some degree, but mainly about procedures to extend access and what is shown to users. Five themes of benefits were identified: \u003cem\u003eImproving adolescents' and parents' emotional state, Facilitated parental care management, Empowering adolescents, Improved partnership and communication\u003c/em\u003e, and \u003cem\u003eEnhanced documentation accuracy.\u003c/em\u003e Five themes of downsides were identified: \u003cem\u003eIncreased emotional distress and confusion, Decreased documentation quality and accuracy, Increased workload, Threatened confidentiality\u003c/em\u003e, and \u003cem\u003eTechnical portal limitations\u003c/em\u003e.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec19\" class=\"Section2\"\u003e \u003ch2\u003eComparison with prior work\u003c/h2\u003e \u003cp\u003e This is the first study to examine pediatric HCPs\u0026rsquo; perceived benefits and downsides of adolescents\u0026rsquo; and parents\u0026rsquo; ORA, as well as views of a regulatory framework for pediatric EHRs.\u003c/p\u003e \u003cp\u003e A larger proportion of HCPs were positive to parents\u0026rsquo; access for children under 13 and the utility of parental access in their work, compared with adolescents\u0026rsquo; access. A possible explanation for this is that adolescents with cancer did not appear to be reading their records, thus their access did not affect HCPs. The perception of adolescents as rare users is aligned with a previous US study on pediatric oncology clinicians [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e] and might be accurate, given that provider encouragement among adolescents is commonly low [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e], they often lack knowledge about patient portals [\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e] and value normalcy when seriously ill [\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e]. Another possible factor could be that adolescents prefer to ask questions via parents [\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e] and may lack confidence in clinical environments [\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e]. Also, HCPs lacked knowledge about information visibility in the EHR and whether parents and adolescents were reading the records, which prevented using the EHR as a tool of communication. Previous work has identified that compared with other HCPs, a minority of oncologists see ORA as means for communication [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e]. In general, perceived benefits of access often concerned anticipatory effects (such as ability to correct or see test results), while several concerns were experienced by the HCPs, such as modifying documentation or being confronted by worried or confused parents. Thus, the benefits did not affect the HCPs positively, in the way that concerns affected them negatively. This may contribute to low ratings of utility and amotivation to encourage patients to use PAEHRs [\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e, \u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eDespite low perceptions of utility from adolescents\u0026rsquo; and parental ORA, HCPs were critical to the access gap. The complications of restricting ORA for parents of seriously ill children has been noted in the literature [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e, \u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e]. Possibly due to HCPs\u0026rsquo; advocacy for adolescents\u0026rsquo; autonomy and privacy, slightly more HCPs were positive about adolescents\u0026rsquo; being able to gain earlier access than parents\u0026rsquo; prolonged access. Threats to confidentiality related to parental ORA was often described as a reason for HCPs\u0026rsquo; difficulties to document sensitive information and subsequent need to omit information from the record. Some HCPs suggested shared access during adolescence, a solution that has been observed as leading to confidentiality concerns. However, attempts have been made at innovative portal functionality, where sensitive information is stored separately and only visible to the adolescent [\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e]. Compromised note quality has been previously anticipated in pediatric care [\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e] and selective omission within the records to ensure confidentiality has been observed among pediatric providers [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e]. Furthermore, a survey study found that oncologists worry more than non-oncology HCPs about decreased quality of documentation [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e], possibly due to the serious nature of some information. One suggestion was enabling HCPs to choose which aspects of the record should be available to adolescents and parents, which has been suggested in a study on HCPs in mental healthcare [\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e]. In their struggle to set age limits, HCPs suggested that access should instead be based on type of care and HCPs should have larger control of what is shown. Other countries have adopted case-by-case approaches, for example, HCPs in Finland assess minors\u0026rsquo; decision-making capacity for each care event, and allow those able to consent to parental view of the information [\u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e]. While allowing larger flexibility, subjective assessments can lead to patient inequality and increased HCP work burden, requiring guidance and resources.\u003c/p\u003e \u003cp\u003eAnother concern of HCPs was related to impact on work and documentation, including compromised clinician autonomy, a concern that has been raised in the literature [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. For example, concerns about confidentiality and rapid release of results have led HCPs to modify their documentation by omitting information, delaying its release, and communicating externally from the EHR. In a previous study, oncology clinicians stated additional strategies to prevent potential harm, such as establishing agreements with radiologists and providing families with anticipatory guidance [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e]. Adjustments such as omitting information from the EHR could lead to risks for patient safety, which was also noted by HCPs in this study, and may even incur medical-legal challenges [\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e]. In accordance with prior findings, HCPs also mentioned technological limitations in concealing sensitive information [\u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e]. Overall, these findings call for portal design that allow concealment of sensitive information from parents and guidance for HCPs to release information while decreasing harm to families. Supporting HCPs in using ORA is critical in order to relieve their concerns and allow for integrating patient portals into care, as a tool to improve partnerships between HCPs, parents, and adolescents.\u003c/p\u003e \u003cp\u003eHCP\u0026rsquo;s lack of knowledge about the application procedure for extended access is notable, as a previous case study identified very low numbers of applications, disproportionate to population size, in the five of Sweden\u0026rsquo;s 21 regions observed [\u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e]. Differences in knowledge among HCPs may lead to unequally distributed opportunities of ORA for adolescents and parents. Moreover, the perceived potential for adolescents of ORA led HCPs to suggest a need to better inform adolescents about the possibility of reading their records. As this was primarily suggested by nurses, future work is needed to explore differences in views between physicians and nurses.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec20\" class=\"Section2\"\u003e \u003ch2\u003eStrengths and limitations\u003c/h2\u003e \u003cp\u003eThis is the first study to explore pediatric oncology HCPs views and awareness of regulations for adolescent and parental ORA. Furthermore, the findings of two collection methods used reflected each other. Yet, the study is not without limitations. First, the small sample of survey respondents restricts inferences to generalisations about HCPs\u0026rsquo; views. Responder bias may also have affected findings: for example, it is possible that those who chose to respond and subsequently participate in an interview were more enthusiastic about ORA, or more sceptical HCPs participated. Participants may also have been impacted by recall bias. Most participants were women and nurses, yet the sample may still be representative since in Sweden, most nurses are women and nursing is the largest healthcare profession [\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e]. The survey used was designed by the authors due to a lack of validated questionnaires available for examining views on ORA. Another limitation is that we did not examine adolescents\u0026rsquo; and parents\u0026rsquo; views and experiences. This was however the aim of a previous study conducted in parallel. An interview guide was followed to improve trustworthiness, and the study was reported according to the COREQ checklist.\u003c/p\u003e \u003c/div\u003e"},{"header":"Conclusion","content":"\u003cp\u003eIn this study, most pediatric oncology HCPs in Sweden were critical about ORA restrictions among adolescent oncology patients. In contrast, they perceived benefits of ORA primarily with respect to parental access. In addition, the importance of strengthening adolescents\u0026rsquo; autonomy was also emphasized by participants. However, most HCPs lacked knowledge about exemptions, information availability and use among adolescents and parents. Uncertainty in addition to concerns about confidentiality and harm was experienced as leading to perceived documentation deterioration. Better understanding about the patient use and integration of ORA within healthcare was requested. Guidance in mitigating anticipated harm may increase HCPs\u0026rsquo; perceived utility of patient portals for adolescents and parents. Furthermore, increased flexibility of regulation, facilitation of procedures and functionality to ensure confidentiality is necessary to ensure patient safety and quality of documentation.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003eCOREQ: Consolidated criteria for Reporting Qualitative research\u003c/p\u003e\n\u003cp\u003eEHR: electronic health record\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eEU: European Union\u003c/p\u003e\n\u003cp\u003eGDPR: General Data Protection Regulation\u003c/p\u003e\n\u003cp\u003eHCP: healthcare professional\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eORA: online record access\u0026nbsp;\u003c/p\u003e\n\u003cp\u003ePAEHR: patient-accessible electronic health record\u003c/p\u003e\n\u003cp\u003eUS: United States\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eEthical approval was granted by the Regional Ethical Review Board in Uppsala, Sweden (EPN 2022/02160). All respondents received study information and provided informed consent.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe study data are not publicly available due to concerns about confidentiality of a small sample. Quotations and analytical categories are included in the text. Contact the corresponding author to discuss the findings or the analysis. Redacted versions of data are available upon reasonable request.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare no competing interests.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis study received funding from NordForsk through the funding to Nordic eHealth for Patients: Benchmarking and Developing for the Future, NORDeHEALTH, (Project #100477), the Swedish Research Council for Health, Working Life and Welfare (FORTE) through the funding to Beyond Implementation of eHealth (Project #2020-01229).\u003c/p\u003e\n\u003ch2\u003eAuthors’ contributions\u003c/h2\u003e\n\u003cp\u003eJH conducted the interviews. JH and MH conducted the qualitative analysis. JH wrote the first draft of the manuscript and CB was a major contributor in writing the manuscript. CB, AH, PL, IS, and MH contributed to study design, design of study material, data analysis, and revising the manuscripts.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWe would like to thank all healthcare professionals who have responded to the survey and participated in interviews. We are also grateful to healthcare professionals who have assisted in recruitment for the study. Also, we want to acknowledge the healthcare professionals who provided their input on study material.\u003c/p\u003e\n\u003ch2\u003eAuthors\u0026rsquo; information\u003c/h2\u003e\n\u003cp\u003eParticipatory eHealth and Health Data Research Group, Department of Women\u0026apos;s and Children\u0026apos;s Health, Uppsala University, Uppsala, Sweden\u003c/p\u003e\n\u003cp\u003eJosefin Hagstr\u0026ouml;m, Charlotte Blease, Maria H\u0026auml;gglund\u003c/p\u003e\n\u003cp\u003eMedTech Science \u0026amp; Innovation Centre, Uppsala University Hospital, Uppsala, Sweden\u003c/p\u003e\n\u003cp\u003eMaria H\u0026auml;gglund\u003c/p\u003e\n\u003cp\u003eDigital Psychiatry, Dept of Psychiatry, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA, USA\u003c/p\u003e\n\u003cp\u003eCharlotte Blease\u003c/p\u003e\n\u003cp\u003eDepartment of Women\u0026apos;s and Children\u0026apos;s Health, Uppsala University, Uppsala, Sweden\u003c/p\u003e\n\u003cp\u003eArja Harila\u003c/p\u003e\n\u003cp\u003eCentre for Empirical Research on Information Systems (CERIS), Informatics, School of Business, \u0026Ouml;rebro University, \u0026Ouml;rebro, Sweden\u003c/p\u003e\n\u003cp\u003eIsabella Scandurra\u003c/p\u003e\n\u003cp\u003eDepartment of Women\u0026apos;s and Children\u0026apos;s Health, Karolinska Institutet, Stockholm, Sweden\u003c/p\u003e\n\u003cp\u003eP\u0026auml;ivi L\u0026auml;hteenm\u0026auml;ki\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eDepartment of Pediatric and Adolescent Medicine, Turku University Hospital, Turku, Finland\u003c/p\u003e\n\u003cp\u003eP\u0026auml;ivi L\u0026auml;hteenm\u0026auml;ki\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eBlease C, Torous J, H\u0026auml;gglund M. 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J Adolesc Health. 2012;51(5):409\u0026ndash;14.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSharko M, Wilcox L, Hong MK, Ancker JS. Variability in adolescent portal privacy features: how the unique privacy needs of the adolescent patient create a complex decision-making process. J Am Med Inf Assoc. 2018;25(8):1008\u0026ndash;17.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSisk BA, Antes AL, Bereitschaft C, Enloe M, Bourgeois F, DuBois J. Challenges to Developing and Implementing Policies for Adolescent Online Portal Access. Pediatrics. 2023;e2023061213.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eEss\u0026eacute;n A, Scandurra I, Gerrits R, Humphrey G, Johansen MA, Kierkegaard P, et al. Patient access to electronic health records: Differences across ten countries. Health Policy Technol. 2018;7(1):44\u0026ndash;56.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHagstr\u0026ouml;m J, Scandurra I, Moll J, Blease C, Haage B, H\u0026ouml;rhammer I, et al. Minor and Parental Access to Electronic Health Records: Differences Across Four Countries. Stud Health Technol Inf. 2022;294:495\u0026ndash;9.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eCreswell JW. Qualitative inquiry \u0026amp; research design: choosing among five approaches. 3rd ed. Thousand Oaks: Sage; 2007.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eDawadi S, Shrestha S, Giri RA, Mixed-Methods Research. A Discussion on its Types, Challenges, and Criticisms. J Pract Stud Educ. 2021;2(2):25\u0026ndash;36.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eCreswell JW, Creswell JD. Research design: qualitative, quantitative, and mixed methods approaches. Los Angeles: SAGE; 2018.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eTong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349\u0026ndash;57.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHedlund F. Att \u0026ouml;verleva till ett rimligt pris. Med Vetensk. 2016;(3):34\u0026ndash;43.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eInera stoppar f\u0026ouml;r\u0026auml;ldrars insyn i barnv\u0026aring;rden [Internet]. P4 Kronoberg. Kronoberg: Sveriges Radio. 2016 [cited 2022 Jan 11]. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://sverigesradio.se/artikel/6503655\u003c/span\u003e\u003cspan address=\"https://sverigesradio.se/artikel/6503655\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eNationella rekommendationer inf\u0026ouml;r. publicering av patientjournal via n\u0026auml;tet om barnsjukv\u0026aring;rd. Oct: Inera AB; 2017.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eFick inte se sin cancersjuke sons journal p\u0026aring; n\u0026auml;tet. \u0026ndash; regeringen lovar \u0026auml;ndring [Internet]. Ekot. 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London: Sheldon; 2021.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eFord CA, Davenport AF, Meier A, McRee AL. Partnerships Between Parents and Health Care Professionals to Improve Adolescent Health. J Adolesc Health. 2011;49(1):53\u0026ndash;7.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eOrth U, Robins RW. The Development of Self-Esteem. Curr Dir Psychol Sci. 2014;23(5):381\u0026ndash;7.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eRyan RM, Deci EL. Self-determination theory and the facilitation of intrinsic motivation, social development, and well-being. Am Psychol. 2000;55:68\u0026ndash;78.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eH\u0026ouml;rhammer I, Kujala S, Hilama P, Heponiemi T. Building Primary Health Care Personnel\u0026rsquo;s Support for a Patient Portal While Alleviating eHealth-Related Stress: Survey Study. J Med Internet Res. 2021;23(9):e28976.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eKaufman A, Rungvivatjarus T, Pierce H, Chong A, Kuelbs CL. Improving Sexual History Documentation in Teenagers. Hosp Pediatr. 2024;14(6):455\u0026ndash;62.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eKelly MM, Smith CA, Hoonakker PLT, Nacht CL, Dean SM, Sklansky DJ, et al. Stakeholder Perspectives in Anticipation of Sharing Physicians\u0026rsquo; Notes With Parents of Hospitalized Children. Acad Pediatr. 2021;21(2):259\u0026ndash;64.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eNielsen MS, Steinsbekk A, N\u0026oslash;st TH. Views on patient portal use for adolescents in mental health care - a qualitative study. BMC Health Serv Res. 2023;23(1):132.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHagstr\u0026ouml;m J, H\u0026auml;gglund M, Holmroos M, L\u0026auml;hteenm\u0026auml;ki P, H\u0026ouml;rhammer I. Minors\u0026rsquo; and guardian access to and use of a national patient portal: A retrospective comparative case study of Sweden and Finland. Int J Med Inf. 2024;105465.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBlease C, Cohen IG, Hoffman S. Sharing Clinical Notes: Potential Medical-Legal Benefits and Risks. JAMA. 2022;327(8):717.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSisk B, Antes AL, Bereitschaft C, Enloe M, Bourgeois F, DuBois J. Guiding Principles for Adolescent Web-Based Portal Access Policies: Interviews With Informatics Administrators. JMIR Pediatr Parent. 2024;7:e49177.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eStatistik om h\u0026auml;lso-. och sjukv\u0026aring;rdspersonal - Socialstyrelsen [Internet]. [cited 2024 May 20]. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.socialstyrelsen.se/statistik-och-data/statistik/alla-statistikamnen/halso-och-sjukvardspersonal/\u003c/span\u003e\u003cspan address=\"https://www.socialstyrelsen.se/statistik-och-data/statistik/alla-statistikamnen/halso-och-sjukvardspersonal/\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-health-services-research","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bhsr","sideBox":"Learn more about [BMC Health Services Research](http://bmchealthservres.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/BHSR/default.aspx","title":"BMC Health Services Research","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"healthcare professionals (HCPs), oncology, adolescents, adolescent health, Patient Accessible Electronic Health Record (PAEHR), Electronic Health Record (EHR), patient portal, survey, ehealth, interviews","lastPublishedDoi":"10.21203/rs.3.rs-4654080/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-4654080/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground\u003c/strong\u003e: Healthcare providers and policymakers worldwide differ in their provision of access to adolescent patients’ electronic health records (EHR). The regulatory framework in Sweden restricting both guardians’ and adolescents’ online record access (ORA) has during recent years received criticism. The aim was to quantitatively and qualitatively, explore attitudes about ORA and perceptions about ORA regulations among pediatric oncology healthcare professionals (HCPs) in Sweden.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods\u003c/strong\u003e: A convergent mixed-methods design (QUAL, quan) was used, consisting of a survey study (N=95) and semi-structured individual interviews (N=13). Physicians and nurses in pediatric oncology were recruited in clinics face-to-face or via staff e-mail. Descriptive statistics were used to present quantitative survey results. Interviews were recorded, transcribed, and analysed using content analysis.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults\u003c/strong\u003e: Participants were critical of the access gap but lacked knowledge about access extensions, with more than 60% unaware of application procedures. Qualitative analysis resulted five themes of benefits (\u003cem\u003eImproving adolescents' and parents' emotional state, Facilitated parental care management, Empowering adolescents, Improving partnership and communication \u003c/em\u003eand \u003cem\u003eEnhanced documentation accuracy\u003c/em\u003e) and five themes of downsides (\u003cem\u003eIncreased emotional distress and confusion, Decreased documentation quality and accuracy, Increased workload, Threatened confidentiality, \u003c/em\u003eand \u003cem\u003eTechnical portal limitations\u003c/em\u003e). HCPs’ views on regulations were categorized into five themes: \u003cem\u003eUncertainty\u003c/em\u003e, \u003cem\u003eAdolescents differ\u003c/em\u003e, \u003cem\u003eBalancing parental support and adolescent privacy\u003c/em\u003e, \u003cem\u003e“I understand why access is restricted, but…”\u003c/em\u003e, and \u003cem\u003eRegulatory changes.\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusions\u003c/strong\u003e: Most pediatric oncology HCPs in this study were critical about ORA restrictions during adolescence, recognizing benefits primarily of parental access. Perceived benefits of enhanced parental support and adolescent empowerment conflicted with perceived risks of confidentiality and emotional distress in adolescents and parents from accessing unexplained results. While ORA has potential to improve partnerships in adolescent healthcare, information, guidance and resources for HCPs are needed to ensure patient safety and quality of documentation.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTrial registration\u003c/strong\u003e: Not applicable.\u003c/p\u003e","manuscriptTitle":"Pediatric oncology healthcare professionals’ attitudes to and awareness of regulations for minors’ and guardians’ online record access: A mixed-methods study in Sweden","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-07-23 21:56:20","doi":"10.21203/rs.3.rs-4654080/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2025-03-11T07:43:39+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-03-10T18:53:35+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"120550612823855581684009819383547427603","date":"2025-02-13T10:10:32+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"319565141417702966660808271919178353361","date":"2025-02-13T09:42:49+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"230887499505941136402191726905160885478","date":"2025-02-10T16:30:20+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-02-08T21:44:15+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"102606364256627698425928716883991969749","date":"2025-02-06T15:00:39+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"336634288090091361392904367891819789287","date":"2025-02-05T19:43:35+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"45700825685192078891777093760832631682","date":"2025-02-05T18:24:19+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"200622249419953879041350304386859810580","date":"2024-08-21T12:20:57+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2024-08-16T10:23:41+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2024-07-01T06:11:27+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2024-07-01T04:57:53+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2024-07-01T04:56:26+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Health Services Research","date":"2024-06-28T10:28:57+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-health-services-research","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bhsr","sideBox":"Learn more about [BMC Health Services Research](http://bmchealthservres.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/BHSR/default.aspx","title":"BMC Health Services Research","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"9b3f5b9c-e4df-45d7-9e37-9848b98f382a","owner":[],"postedDate":"July 23rd, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2025-12-01T16:14:40+00:00","versionOfRecord":{"articleIdentity":"rs-4654080","link":"https://doi.org/10.1186/s12913-025-13697-3","journal":{"identity":"bmc-health-services-research","isVorOnly":false,"title":"BMC Health Services Research"},"publishedOn":"2025-11-27 15:58:33","publishedOnDateReadable":"November 27th, 2025"},"versionCreatedAt":"2024-07-23 21:56:20","video":"","vorDoi":"10.1186/s12913-025-13697-3","vorDoiUrl":"https://doi.org/10.1186/s12913-025-13697-3","workflowStages":[]},"version":"v1","identity":"rs-4654080","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-4654080","identity":"rs-4654080","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}