How can you help young people during their medical appointments?

We have Young People and Families teams across the UK. Our goal is for young people living with rheumatic musculoskeletal diseases (RMD) to:

  • feel less isolated
  • have increased understanding of their condition and the support available to them
  • feel more confident and optimistic for the future.

We run a programme of events throughout the year, including residentials, workshops and family events, co-facilitated by volunteer peer supporters who were themselves diagnosed when they were young.

We also work closely with some of the specialist paediatric rheumatology multidisciplinary teams across the country, attending MDT meetings and adolescent clinics.

For young people living with RMD, health appointments are a regular part of their lives. But the Young People and Families team often hears from young people that:

  • they do not know why they are asked certain questions during consultations;
  • they aren’t confident in asking questions in clinic appointments;
  • often, they don’t answer truthfully.

We developed a workshop to explore this further with young people. We ran it twice, with 36 young people participating. At the workshop:

  • 13 were male and 23 female;
  • those participating were aged 12 to 19, with the average age of 14 ½;
  • the young people had a range of diagnoses; 75 % had JIA (27 yp) and the remainder had diagnoses including Juvenile dermatomyositis, scleroderma, lupus, Ehlers-Danlos syndrome and hypermobility syndrome.

A paediatric rheumatology consultant, physiotherapist and a clinical nurse specialist generously videoed themselves asking “standard” health questions and gave an explanation of their meaning for us to share with the young people.

In the workshop, consequences of inaccurate answers to health questions were explored through the videos, quizzes and small group work. We also asked young people what healthcare professionals could do to help them engage more confidently (and honestly) in appointments. This is what they told us:

  1. Smile – this was the top answer. A smile can make all the difference! Young people said they felt more relaxed if their healthcare professional was friendly, engaging and interested in them and didn’t spend too much time looking at the computer screen.
  2. Be honest – even if they got upset, young people still wanted to know the truth about their diagnosis and the side effects of medicines.
  3. Ask patient not parent – if the healthcare professional looked to the parent for confirmation, the young person felt they were not being believed.
  4. Reassure – young people wanted to know things would get better, as to them, concerned faces could sometimes appear scary.

In general, young people need to be active participants in their healthcare if they are to independently manage their own health in the future.

If healthcare professionals can follow these top tips from the workshop, young people believe this will certainly help them to achieve this.

Find out more information about supporting young people with arthritis.