What are the barriers and challenges?
1. Being left out of the conversation
“You sort of feel left out. I feel like my parents are the ones with the condition, not me. I should get advice about what I want to do, not what my parents say.”
“You might as well not be there if they’re just talking to your parents. It makes me feel a bit angry because they’re not listening to me.”
When children and young people see health and social care professionals, with their parents they can
- Feel that the conversation is only between the health and social care professional and their parents.
- Feel unable to speak up because this is not something they would usually be allowed to do.
- Face assumptions about their level of knowledge and their ability to understand which can limit interaction to ‘social talk’ and non-health related issues.
- Feel less involved in making choices, decisions, and discussions about treatment.
- Have more anxiety due to the poor communication and exclusion decision-making.
Health and social care professionals should make sure that the children and young people are fully involved in conversations, choices and decisions about their health and social care.
2. Seeing health and social care professionals on their own
“When I go to the doctors, he’s really good. He explains everything to me fine, there’s no jargon involved. But erm, when it comes to what I’m actually supposed to do to treat whatever ailment I have, he doesn’t explain it that well.”
When children and young people see health and social care professionals on their own they can
- Be worried, anxious and find it difficult to talk openly.
- Find it difficult to ask questions.
- Find it difficult to fully understand what was said, their condition, their treatment or what they need to do next.
Health and social care professionals should put children and young people at ease, encourage them to ask questions, ensure that they understand their options, are involved in making choices and decisions, and understand and agree what will happen next.
3. Adults using complex language
“When they talk to my parents instead of me I can’t understand what they’re saying because my parents are adults and I can’t understand the words they’re saying. If they were talking to me they would use easier words.”
When children and young people communicate with health and social care professionals they can
- Struggle with terminology and medical jargon.
- Struggle to understanding adult language.
- Get frustrated when even ‘simple’ language isn’t enough to help them understand.
- Feel unable to influence the decisions that affect them, even if on the surface they are being listened to.
Health and social care professionals should help children and young people to understand their condition and options.
4. Adults focusing on the condition and symptoms
“If you have a long-term health condition, that’s not the only health issue you have! It’s important to remember, we are more than a health condition. We have this as well as all the same health needs other young people have. Don’t forget to ask us about this to.”
“I don’t just want information about my condition. I have the same needs as other young people too. I want to be given information about how to stay healthy too.”
When children and young people only hear healthcare professionals talk about their condition they can
- Feel like a condition and not a person.
- Feel like their goals and wishes are not taken into account.
- Be concerned that the impact of their health on their wider lives is overlooked.
- Worry that important information about their health might be missed, which can affect meaningful choice and decision making.
- Worry that the emotional impact of their health is ignored.
Healthcare professionals should help children and young people to understand their condition and options without patronising them.
5. Being overprotected
“Even if it’s bad news, it’s better to know than not know, otherwise, you only worry more. We know it, we feel it…we live with it every day.”
When children and young people are overly protected they can
- Lose trust in the healthcare professionals and their parents.
- Avoid raising concerns.
- Start to worry about minor problems and procedures in case they turn out to be worse than they have been told.
Healthcare professionals should be honest with children and young people to allow them to make informed decisions and feel involved in their healthcare.