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Virtual Consultations: Young People and Their Parents’ Experience

Authors Proulx-Cabana S, Segal TY, Gregorowski A, Hargreaves D, Flannery H

Received 19 November 2020

Accepted for publication 2 March 2021

Published 28 April 2021 Volume 2021:12 Pages 37—43

DOI https://doi.org/10.2147/AHMT.S292977

Checked for plagiarism Yes

Review by Single anonymous peer review

Peer reviewer comments 3

Editor who approved publication: Professor Alastair Sutcliffe

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Stephanie Proulx-Cabana, Terry Yvonne Segal, Anna Gregorowski, Dougal Hargreaves, Halina Flannery

Paediatric and Adolescent Division, University College London Hospitals NHS Foundation Trust, London, UK

Correspondence: Stephanie Proulx-Cabana
Paediatric and Adolescent Division, University College London Hospitals NHS Foundation Trust, 235 Euston Road, Bloomsbury, London, NW1 2BU, UK
Tel +4420 3447 5240
Email [email protected]

Purpose: Evaluate the experience of virtual consultations for young people and their families and assess whether young people are being offered a confidential space as part of these virtual encounters.
Patients and Methods: An anonymous online survey was sent to young people age 10– 18 y.o. who had experienced at least one virtual consultation with an adolescent medicine tertiary service in the United Kingdom between March 13th and June 13th 2020 mostly associated with, but not exclusively, management of chronic fatigue syndrome or medically unexplained symptoms. Responses from the survey were analysed by two authors who independently coded the common themes reported by the participants.
Results: Fifty young people and their families participated in the survey. Eighty-eight percent reported feeling prepared for virtual appointments, 90% found them helpful, 88% felt that they were private and 86% reported they would find further virtual appointments helpful. Positive impacts reported were no need to travel (38%) and the continuity of care (36%). Many of our participants reported no negative impact (39%) and felt that nothing needed to be improved (56%). The most frequent improvement reported was the provision of a quality video call (34%). Only 36% of young people had the opportunity to speak in confidence to the health care provider without their parents’ presence.
Conclusion: Virtual appointments are perceived as safe and helpful by the young people and their families. Professionals should offer a confidential remote space for young people to speak without their parents.

Keywords: COVID-19, SARS-CoV-2, young people, remote consultation, telemedicine, telehealth

Introduction

The COVID-19 pandemic forced the disruption of many clinical services, such as face-to-face modes of patient care. This became significantly more difficult due to government guidelines regarding privacy protection for vulnerable groups. Health services rapidly adopted alternative modes of patient care, but there is a lack of data available regarding the efficacy and unintended consequences of such newly adopted methods.

The technology to enable virtual consultations has existed for some time, yet uptake has been limited. Systematic reviews and meta-analyses of psychological therapies delivered virtually have shown promising outcomes1,2 and have shown advantages in terms of accessibility, flexibility and cost-savings and high degree of acceptability to patients.3

The DAWN4 and VOCAL5 studies have evaluated the use of virtual online consultation and have found virtual appointments to have similar outcomes to face-to-face appointments, reduce the number of appointments not attended and be highly effective for some, but not all and recommended that patients be given a choice of the modality of appointments. However, very little research has been conducted on the effectiveness and experience of virtual consultations for young people.4,6–8

Barriers to wider uptake have included clinician reservations, such as changes in the therapeutic relationship, reduced non-verbal interaction, maintaining confidentiality, responding appropriately to risk situations, and complying with the appropriate best practice.9 Additionally, local governance and practical issues, such as the availability of appropriate technology, and concerns over accessibility for patients, highlight some of the key organizational, technological and social factors impacting on the adoption of virtual platforms discussed in a recent review by Bokolo.10,11

Furthermore, confidential care has long been recognised as the standard of care for adolescents as this allows for assessment of the sensitive issues that would not be appropriate to discuss in front of parents.12 However, providing the same confidential safe space that would be offered in a face-to-face appointment, in a virtual environment could be difficult due: to limitations related to physical environment at home, technology literacy and access, as well as the attention of the health care provider to propose and ensure a meeting with the adolescent alone as part of the consultation.13 National healthcare guidance during the pandemic encouraged increased flexibility and sensible decision-making with regards to information governance, enabling previous barriers to be overcome and allowing continued patient care.14 In order to provide continuity of care for the patient group, our adolescent service made a decision to offer telephone and video consultations in place of face-to-face appointments. However, aware of the potential pitfalls of virtual consultations especially in the context of their necessary abrupt introduction,15 our service wanted to assess if our provision of virtual care was perceived as acceptable by young people and their family. The aim of this survey was to evaluate the general experience to guide our teams in ways to improve these appointments, as well as assessing if confidential care was adequately offered and delivered by our team.

Methods

Our tertiary adolescent service provides care to young people of the United Kingdom age 10 to 19 years-old for a wide range of complex medical conditions with the main focus on the management of chronic fatigue syndrome (CFS/ME) and medically unexplained symptoms. The service offers multidisciplinary outpatient, day care and inpatient models of rehabilitation.

A ten-question anonymous online survey was developed by the co-authors of this article using the SurveyMonkey platform to assess young people and their family’s experience of virtual appointments with a particular focus on offering confidential space to young people during the virtual appointment. Survey questions were circulated to all members of the multidisciplinary team to be evaluated and modified accordingly to the final version that was sent to young people. The details of the survey questions are provided in Table 1.

Table 1 Survey Questions

The survey was registered as service evaluation in our establishment as the main goal was to evaluate the team’s delivery of virtual care in the context of abrupt transition to virtual appointments when people rarely provided this kind of appointment. There was a time pressure as our team was concerned to know whether the care we were now providing was felt to be helpful, unhelpful or even deleterious to the young people or their families. As the survey was kept completely confidential in the sense that no demographic information that could identify the participants in any way was collected, approval of the ethical committee was not deemed necessary.

A three months period for this survey was decided to provide rapid feedback to the clinical team, starting March 13th 2020, when inpatient elective admissions and face-to-face outpatient appointments were suspended. All potential participants were identified by reviewing all clinical encounters encoded under our team’s clinic codes within this timeframe. An email invitation to participate in the survey was sent to young people for whom we had an email address who had at least one virtual consultation. The email drafted to be sent to all young people for the survey explained the aim of the survey, that all recorded information as part of the survey did not include any demographic information that would allow anyone to identify them, that participation was voluntary and would not impact on their future medical care, as participation to the survey would not include their name. We also provided them with an email address in order to contact a member of the survey team if they had any further questions or concerns that they wanted to discuss in further detail. It also explained that the information collected would be shared with our team and could be used for further dissemination including publication as an article. Based on this relayed information, we did not ask for written consent from our participants but considered that we provided them with all necessary elements for their participation in the survey to be conducted with informed consent. One hundred and fifty-seven young people were identified and invited to participate, of whom 17% were inpatients and 83% outpatients. Each patient received two reminders before the end of the survey period.

The data were manually coded and analysed by two authors using an Excel Spreadsheet. Proportions were manually calculated. Emergent themes were independently blindly coded by the two authors based on qualitative answers collected. Agreement was reached in all cases.

Results

Fifty responses were collected (response rate 32%). The survey was completed by the mother of the young person (48%), followed by the young person (28%) and both (16%). Participants reported having 2 to 3 (48%) or 1 (32%) virtual appointments at the time of the survey. Six percent of our sample experienced more than 7 appointments. Telephone appointments were the most frequent method (82%). Twenty-eight percent of participants experienced both video and telephone modalities. Professionals reported as most frequently involved in virtual appointments were Doctor and Consultant Nurse (76%), Occupational Therapist and Physiotherapist (42%) and Clinical Psychologist (16%). Participants reported the reason for their virtual appointment was CFS/ME (86% of participants), followed by medical issues or emotional wellbeing both at 26%.

Young People and Parents’ Experience

Experience was recorded on a five-point Likert scale ranging from strongly disagree to strongly agree. We considered an agreement with the statement if the participants selected either agree or strongly agree with this question. A high proportion of participants had a very positive experience of virtual appointments. Most young people and families reported feeling prepared for the virtual appointment (88%), found them helpful (90%), felt they were confidential (88%) and would find further virtual appointments helpful (86%).

Table 2 presents the themes derived from questions 7 to 9 of this survey (Table 1) such as perceived positive and negative impacts of the virtual consultations and desired improvements to future virtual appointments. Responses to the reformulation of these questions provided similar responses and showed good alternate-form reliability for this part of the survey.

Table 2 Identified Themes Regarding Impact of Virtual Modality to the Consultation

Provision of a Confidential Space for the Young Person

As part of one question of the survey, data about who participated in the consultation with the professional were obtained. We found that slightly more than half of our participants (52%) were seen with their parents present for the whole consultation while 10% of consultations involved parents speaking to professionals without the patient. The remaining 36% is composed of consultations where young people were spoken to alone for the whole consultation (12%) or parents and young people were seen together but separate space was offered to the young person on their own as part of the appointment (24%). This survey highlighted that about a third of the young people spoke to the professional privately and in confidence remotely away from their parents.

Discussion

In this study, we demonstrated that for young people and their families, the use of virtual consultations was perceived as both positive and safe. Another important theme was an appreciation of the continuity of care despite the limitations associated with the cancellation of face-to-face appointments which has been reported in other studies published since the beginning of the COVID-19 pandemic.16–18 Telephone was more frequently used before offering video alternatives, probably due to appointments being transferred as a default to telephone appointments initially, but also potentially due to Internet connectivity issues for the health professionals limiting the possibility to offer video.15 Most of our participants felt that there was no negative impact of the virtual modality on the consultation apart from technical issues. This is an important point to consider as poor video quality can lessen the patient’s satisfaction with the appointment and become an obstacle to adequate engagement.19 Our participants also reported that they felt that no necessary improvements needed to be made to the current provision of virtual care. This user perspective should be taken into account alongside previously described barriers to wider uptake including clinician reservations, changes in the therapeutic relationship, reduced non-verbal interaction, maintaining confidentiality, responding appropriately to risk situations, and complying with appropriate best practice guidelines,9 although these concerns were only raised for a minority of participants. Socioeconomic barriers to effective remote consultations need to be considered.13

Although the majority of our participants felt that confidentially was not an issue, only 36% of young people consulted with the professional without their parents.12 Good practice in adolescent medicine is to offer confidential space as part of the appointment to address sensitive subjects and conduct a psychosocial interview. The risk with virtual appointments is that it is harder to achieve a safe space to discuss these subjects and important biopsychosocial concerns could be missed.13

There are limitations to this study. First, with an aim of obtaining a rapid evaluation of our service provision of virtual appointments, the validity of our survey was only based on content validity provided by our team members and no other formal validity assessment was performed. We also have not piloted this survey first and it would have been useful in providing us means of better assessing validity. Another major limitation is the low response rate of 32% that we had as this could introduce a non-response bias to this study, especially if those who chose to complete the survey were mainly those who had a very good experience of this modality. Although we had sent each young person two reminders, our choice to end the survey after 3 months, which was dictated by our clinical needs to obtain rapid feedback into our team’s provision of care, might have impacted negatively on our response rate and consequently on the strength of the results of this survey. Also, we chose to keep the survey anonymous, making it impossible to know if our sample was representative of our clinic population in respect to the proportion of previous inpatients and outpatients. As there was missing data from the qualitative questions, emergent themes were not provided by all participants. A major positive theme that came out of this survey is the reduction in the need for travel. This needs to be interpreted in light of the nature of our sample as long journeys are difficult to tolerate for young people with CFS/ME, but has also been previously reported as a benefit of virtual appointments.20

The timing of this study made virtual appointments the default modality that could be offered to patients and 36% of respondents cited continuity of their care during the pandemic as a positive impact of virtual consultations. Previous research found that when a choice of modality is available, clinicians deemed a small proportion of patients as suitable for virtual consultations and most effective for those who they already had a relationship with, while patient advisory groups advocate for a choice of modality for all.1 It would be interesting to know, when the face-to-face appointment modality is offered again, if young people would prefer it over virtual appointments or if they would favor a mix of both. It is also important that clinicians have a choice in order to ensure confidentiality, equality, safety, that safeguarding needs are met, and that the infrastructure to continue delivering virtual appointments effectively and safely is supported.21

Conclusion

This study provides crucial data about young people’s perception of virtual appointments for clinicians and reassurance that the care provided feels safe and acceptable to young people and their families. Professionals should not feel hesitant to offer virtual appointments in their regular practice, in our opinion complementing face-to-face when required and used with caution to ensure that safety, confidentiality and safeguarding are considered. Negative impacts in our population were mainly related to technology difficulties. The main concern that our survey highlighted is that, when dealing with young people, clinicians should not forget to provide a safe confidential space to speak privately without the presence of their parents, even if this is more challenging in a remote consultation. These results should however be considered carefully in light of the limitations of this study including the low response rate, our particular patient sample and the pandemic context in which this study took place. As virtual appointments are likely to continue to be offered now that the structural and technological support surrounding this modality has been implanted in most clinical settings due to COVID-19, we aim to use the experience of this pilot survey in order to assess more reliably the long-term experience of young people and their families outside of a pandemic context.

Acknowledgments

We would like to thank the Treatment and Rehabilitation of Adolescents and Children with Complex Conditions Service (TRACCS) team for their comments on the survey questionnaire and all TRACCS young people and parents that took the time to complete this survey. This survey was registered as a service evaluation within our institution. Ethical approval was not deemed necessary as this survey was conducted anonymously as part of the service evaluation. This survey has not received any specific funding.

Author Contributions

All authors made substantial contributions to conception and design, acquisition of data, or analysis and interpretation of data; took part in drafting the article or revising it critically for important intellectual content; agreed to submit to the current journal; gave final approval of the version to be published; and agree to be accountable for all aspects of the work.

Disclosure

The authors report no conflicts of interest in this work.

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