Engaging young people in their own care is key to improving adolescent health
Isobel Fazarkeley was only 2 years old when she was diagnosed with Type 1 Diabetes. She is now 18 and about to begin studying for her final high school exams. “I think it is easier for me having had diabetes since the age of 2, I don’t know a life without it,” she says.
Asked what has been the hardest age at which to have diabetes, her answer is simple: “The first year of secondary school (age 11-12), taking on more responsibility for my care alongside lots of other big changes in my life”. Isobel has been fortunate to have had access, since the age of 11, to health care tailored specifically to adolescents.
Her mother, Kate, is extremely positive about Dr Billy White and the team at University College London Hospital (UCLH), England who support Isobel. “They are very proactive on engaging with her, they recognize the needs of adolescents,” she says. “He really understands diabetes and understands the effort she puts in, he motivates her by putting the emphasis on what she has done well. He uses the phrase ‘catching people out doing the right thing’. This leaves Isobel coming out feeling as though she is quite good at managing her diabetes.”
Dr White, Isobel’s doctor, says “Adolescents are a unique group of people with their own requirements. At an early stage parents do most of the talking, but I aim to empower the young person to think and talk about what they want from their healthcare, whilst at the same time recognizing the importance of a parent’s contribution.”
Dr White and his team recognize the need to provide a comprehensive and convenient service to adolescents. “He will often see me at 4pm, which is incredibly helpful as it means I only miss one lesson at school, rather than several,” says Isobel. He also makes use of new technologies to improve care, occasionally speaking to Isobel over the phone, although this cannot completely replace in-person appointments, given the need for blood testing.
Simple measures can make adolescent participation possible
Providing convenient appointment times and engaging with non-traditional forms of media are a key component of England’s national guidelines on adolescent healthcare. By analysing these and 25 other countries’ guidelines, WHO has created the first-ever Global Standards for Quality Health-Care Services for Adolescents. The standards build on the consultation with more than 1000 adolescents worldwide, which itself exemplifies one of their key recommendations – adolescent participation.
“I have had access to outstanding care which adapts to my needs as I have developed.”
Isobel is actively invited to participate in improving her own care, something she says is one of the most positive aspects of her experience at UCLH. She is regularly involved in focus groups, including one on the role the UCLH psychology team can play in providing care to adolescents with diabetes. This has resulted in a policy where all adolescent patients are offered an appointment with the psychology team at each diabetes appointment. This option takes away some of the stigma and makes it easier to address other health needs at the same time.
The core message of WHO’s standards is simple; adolescents have unique needs, they should be treated as such, rather than as young adults or older children. This means that all health workers should have specific training on how to best care for adolescents.
“It is unacceptable that students of medical and nursing schools leave their training with no understanding of the specific challenges faced by adolescents in accessing healthcare,” says Dr Valentina Baltag, expert in adolescent health at WHO. The newly released standards call for all health-care providers and support staff to be trained in adolescent health.
Back in England, Isobel has an insightful take on her situation “I have had access to outstanding care which adapts to my needs as I have developed,” she says. “However I should not be a special case, everyone should have access to this. I hope that these new WHO standards will help make that a reality.”