JMIR Publications

ABSTRACT

Background:

With the increase of patients’ online record access (ORA), a variety of approaches to access to minors’ electronic health records (EHR) have been implemented globally. The current regulatory framework in Sweden precludes ORA for minors and guardians when the adolescent is between 13 and 15 years old. Perspectives of seriously ill adolescents and their parents have not been studied.

Objective:

To quantitatively and qualitatively investigate the perceived benefits and downsides of ORA and awareness of and views on ORA regulations, among adolescents with a serious health condition and their parents in Sweden.

Methods:

A convergent mixed-methods (QUAL, quan) design was used, consisting of a survey and semi-structured individual interviews with adolescents with a serious health condition (13-18 years old) and their parents. Participants were recruited via social media and in clinics. Quantitative data was presented descriptively. Interviews were audio-recorded, transcribed, and analyzed using inductive thematic content analysis.

Results:

The survey population included 31 adolescents and 57 parents, of which 8 adolescents and 17 parents completed an interview. Mean age of adolescents was 16 and most parents were aged 45-54 years (29/56, 50.9%). Surveys indicated that most parents (86%) were critical to the access gap, and most adolescents (64.5%) did not know the age for gaining access. In interviews, adolescents and parents identified benefits related to ORA that were categorized into five themes (Empowering adolescents, Improved emotional state, Enhanced documentation accuracy, Improved partnership and communication, Supported parental care management, and More prepared for appointments) and downsides related to ORA that were categorized into four themes (Emotional distress and confusion, Threatened confidentiality, Increased burden, and Low usability). Adolescents’ and parents’ views on ORA regulations were categorized into three themes: Challenges of the access gap, Balancing respect for autonomy and support, and Suggested regulatory change.

Conclusions:

In Sweden, ORA regulations and lack of available information lead to significant inconveniences, in particular for parents of adolescents with a serious health condition. Adolescents’ and parents’ views on access age limits differed, primarily due to adolescents’ perceived need for own access contrasting with parents’ concerns about adolescents having ORA. Increased education, dialogue, and flexibility was suggested as measures to uphold confidential and consistent delivery of adolescent healthcare. Further work should explore pediatric healthcare professionals’ (HCPs’) views on restrictive ORA regulations. Clinical Trial: Not applicable.