Involving young people in decision-making about their long-term conditions: What nurses need to know

This week’s Blog is written by Niamh Adams (@niamhadams_) a journalism undergraduate student at the University of Sheffield. Niamh has her own Blog site. Go to to read more.

Making a young person feel heard when it comes to decision making is essential and even more so when it comes to their long-term condition. Allowing a young person to have some sort of control over key decisions regarding their health will only benefit everyone: You as nurses will gain a better insight into the life of that young person and us as young patients will feel involved and are more likely to respond positively to advice.

Decision making when it comes to a long-term condition can be challenging even for an adult so for a young person it can be overwhelming. Most young people have gone their entire lives with adults making decisions for them so when the responsibility is put on their shoulders every young person can handle it differently. No young person is the same and how one may handle a decision could be completely different to another.

A young person may feel overwhelmed sometimes when decisions have to be made regarding their health especially when they are not used to having that type of control. Other young people will adapt to being in control very naturally and will thrive in having that type of control over their health.

Nevertheless, explain everything to us: the good, bad and the ugly! Do not sugar coat anything, explain the positives and the negatives of each side of the decision. Throw us all the information you have, allow us to think, ask questions and give us some time. Most importantly support us whatever we decide.

While giving us all the information, nevertheless, do not patronise us because we are probably a lot smarter than you think and after all we are our own expert. Striking a balance between medical jargon and ‘normal’ language is important.

Failing to consult a young person or an absence of a young persons’ perspective can result in a waste of time and resources. Without a young persons’ opinion, you as nurses may not be able to gather a full picture of what is going on in that young person’s life, therefore your decision may be unsuitable. This could ultimately lead to a young person not responding positively to the treatment and possibly becoming disengaged in future plans regarding their health.

Overall, the thought of involving a young person in decision making should be a positive one. Not only for the benefit of the young person who can thrive off making these decisions but for you as nurses to gather a deeper insight to that patient’s life and build a trustful relationship. Where information and advice are exchanged freely and positively to improve the young patient’s life, living with a long-term condition.

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