Our study offers insight into the experiences of adolescents admitted to the medical wards at one tertiary pediatric hospital, as well as the perspectives of HCPs involved in their care. The adolescent patients (n = 25) represented a range of genders, ages, as well as lengths of and reasons for hospitalization. The HCPs (n = 40) represented various professions and years of professional experience.
Our results suggest that adolescents admitted to our medical wards are generally satisfied with their care. This included positive ratings of their interactions with HCPs, generally high ratings (albeit with more mixed results) of various hospitalization parameters (e.g., sleep quality, food, recreational options), and overall feelings of having adequate social support during their admission. From HCPs, we observed an overall positive attitude toward adolescent patients, despite adolescents subjectively requiring more of the providers’ time to manage. There were numerous positive mentions from HCPs about opportunities for collaborative decision-making and counseling with adolescent patients.
Our findings also highlight areas of unmet needs in the way adolescent care is delivered within our hospital setting. In terms of patient-provider dynamics, several adolescent participants called for clearer communication – particularly if care was divided among multiple providers – and validation of their illness experience. In essence, this is a call for improved patient-centred communication.26 Multiple adolescents spoke to the importance of being asked for, and correctly addressed by, their gender pronouns. Several other studies have emphasized the importance of gender pronouns in youth and adolescent care,27–29 and recognized the need for continuous learning on behalf of care providers in this area. They also comment on some of the harms associated with mis-gendering as it pertains to patient-provider relationships, be it poor treatment adherence, inadequate health behavior changes, or disengagement from health services. Additionally, our findings suggested that several elements of a comprehensive psychosocial assessment may be partially or wholly missed during an adolescent’s hospitalization (see Fig. 2). Though these results are prone to participant recall bias, the correlation between areas adolescents recall being least asked about mirror the areas that healthcare providers identified as being least comfortable in addressing (e.g., body image, gender identity, sexual activity).*** This is further substantiated by the providers’ narrative comments, many of which alluded to feelings of discomfort in these areas.
Findings from both participant groups suggest that privacy is of great concern and paramount to the patient experience. This was reflected in calls for enhanced physical privacy (e.g., single-patient rooms) as well as informational privacy. Patient confidentiality, in particular, is a well-documented tenet of adolescent care5,30,31 and is challenging to uphold when space is limited and with the emergence of electronic ‘open notes’ available to patients and/or proxies via electronic medical records.32 Our findings also suggest the need to make the physical environment more adolescent-friendly through tailored recreational offerings, appropriate décor, and designated social and clinical spaces. This is echoed in the literature pertaining to hospital spaces for adolescents.33,34
Finally, education and clinical resource issues appeared in numerous narrative comments from the HCP group. Many felt a degree of discomfort addressing adolescent health issues such as gender and sexuality, eating disorders, somatization, and chronic pain. This suggests a need for further education and training in these areas. In addition, resource limitations – whether in the inpatient, outpatient, or community setting – were mentioned by several HCPs. These comments mirror broader data about the growing demand for adolescent health services in recent years and especially so since the COVID-19 pandemic.35,36 We hope our findings add to this broader call to action at a health systems level.
Limitations
Our adolescent sample (n = 25) represents a small subset of inpatient youth admitted to one hospital and excludes those who were too medically unwell or cognitively impaired to complete the questionnaire, and those who could not communicate in English. The adolescents in these excluded groups may have had significantly different perspectives of their hospitalization. Other potential sources of bias may have been the presence or absence of a bystander while participants completed the survey (e.g. a parent in the room), a possible element of social desirability bias (given some of the sensitive questions being asked), and non-response bias in the incomplete surveys excluded from analysis. In the HCP group, we are limited by a self-selection bias in the context of an estimated 70–80% non-response rate as well as a skewed participant pool (significant representation from medicine and nursing; no representation of certain sub-groups, namely, social workers, child life specialists, and health care aides). Although a single-center study may not be generalizable to other settings, we believe that our participant sample meets our objective of highlighting adolescents’ and HCPs’ experiences in order to improve care at our institution. Additionally, our findings are representative of universal themes and challenges pertaining to adolescent care in general as echoed in the broader literature.