To describe the first engagement event after the pandemic
Obtain feedback on the services of a Paediatric and Adolescent Division in a tertiary adolescent unit.
Methods During a young person engagement event in August 2021, a qualitative framework was used of young services users on their opinion of their experience of a tertiary adolescent services post pandemic. 35 young people were invited with 25 who actively participated. They were divided into 5 focus groups based on their age. Multidisciplinary staff members facilitated the groups. A colour coded system was used to describe the perceived quality of the services whether they felt services were excellent or whether there were opportunities for improvement.
The holistic care concept encompassed of 6 elements:
Another aspect covered was ‘Safe care’ and patients gave comments on areas included clinical specialism, communication, waiting times, length of stay and specialist facilities. Patients also responded on location of care whether face-to-face or online at home.
Results Young people felt holistic care was paramount to help navigate stages of their life and illness as they got older. This holistic care would include guidance on independence, education, career paths and employment opportunities as well as support with their illness.
Young people valued being placed on wards with people of similar age and liked having access to social media to establish their own peer support and to communicate with their team. Some young people felt being offered psychological support earlier on would be helpful in order to have strategies to help cope when issues occurred due to their conditions.
Young people felt communication with them was often via post and they did not read the letters sent to them, leaving it to their parents to digest instead. They felt it was important they were listened to and their lived experiences heard: ‘Trust that even though we are children, we know ourselves’ .
Young people were fearful of transition, of turning 19 and described it as being ‘ripped’ away from the teams that knew them best.
Young people liked virtual appointments as they decreased waiting times and avoided long journeys to hospital which some felt was less stressful. For some, virtual appointments felt better if they knew the team member.
Conclusions Engagement events with young service users are key temperature checks on how services are being delivered. They help identify areas that work well but crucially areas of improvement. A move towards using social media for peer support would be supported.
Exploration of other methods of communicating clinic letters should be considered, as this was identified as an important area of change for young people to make them feel listened to and empowered about their own health and lives. Further events are planned in the future.
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