What support is there for young people to navigate relationships and sexuality if they have life-shortening conditions?

When young people with life-shortening conditions reach adulthood, what support do they need?

Medical advances mean more young people with life-shortening conditions are reaching adulthood. But healthcare, education and social support have not always adapted to their changing lives.

Until relatively recently, many children and young people with many life-shortening conditions were not expected to survive into adulthood.

Conditions such as cancer, cystic fibrosis and Duchenne muscular dystrophy were widely understood, particularly in the late 20th century and early 2000s, as conditions that could result in death during childhood or adolescence.

Today, more than 400 life-shortening conditions are recognised. Most children with these conditions still do not reach adulthood, but advances in medical treatment, specialist care and assistive technologies mean increasing numbers are living for longer.

For some, this means reaching milestones that were once thought unlikely: becoming teenagers, forming relationships, leaving home, studying or working, and thinking about their sexual and reproductive lives.

Yet the support available to them does not always reflect these changing expectations.

From surviving childhood to living adulthood

When a child is diagnosed with a life-shortening condition, families and professionals may understandably focus on managing illness, providing care and preparing for the possibility of an early death.

But what happens when the child grows into an adult?

For many families, reaching adulthood can mean entering territory they were never prepared to navigate. Parents who were once told that their child probably would not survive childhood may suddenly be supporting a young adult who is thinking about relationships, sex, intimacy and reproduction.

Health and care professionals can face similar challenges. Nurses, doctors and therapists may have limited training in discussing sexuality and relationships with disabled young people, or may feel uncertain about how to approach subjects that have traditionally been overlooked.

This can leave young people without the information and support their peers receive.

Why sexuality is often overlooked?

Research co-produced with disabled young people has found that many feel unsupported when it comes to their sexual and reproductive lives. Families and carers can also report feeling unprepared.

One reason is the assumption that disabled young people are primarily vulnerable and need protection, rather than people who may have desires and relationships, and who want to live full lives.

This can lead to disabled young people being treated as asexual or infantilised.

For someone with a life-shortening condition, those assumptions can be particularly difficult to challenge. If professionals and families have spent years expecting the person to die young, sexuality and relationships may seem less relevant than medical care.

But a shorter life does not mean that relationships are unimportant.

What do young people say?

The young people involved in the research described romantic relationships and sexual intimacy as a normal part of growing up.

They also described relationships as important to their wellbeing. Some talked about intimacy as a source of emotional support and connection, while others described relationships as helping to reduce loneliness and feelings of depression.

For some participants, taking part in the research was the first time they had been able to talk openly about sexuality and relationships.

This points to a wider issue: the absence of conversations can itself become a form of exclusion.

Of course not every young person will want a sexual relationship or will want to become a parent. But they do need the opportunity to access information, discuss their wishes and make informed decisions about their own lives.

Can safeguarding create barriers?

Safeguarding is essential for protecting young people from abuse and exploitation. But research suggests that safeguarding practices can sometimes contribute to silence around sexuality when they are combined with assumptions about disability and vulnerability.

Sex education can be one example.

One young person involved in the research described being removed from sex education at school. Staff believed the subject might distress her or was inappropriate because she was expected to die young.

The result was that she missed information provided to her peers.

The challenge is therefore not to choose between protection and autonomy. Young people need both.

Good support should safeguard them from abuse while also giving them appropriate information about relationships, consent, sexual health and their rights; this protects them, empowers them, and encourages self-advocacy.

What needs to change?

Families, carers and professionals can play an important role in helping young people navigate relationships and sexuality, but many need more training and confidence.

This starts with questioning assumptions about what disabled young people can or cannot do, and what they might want from adult life.

It also means making sure young people have access to inclusive sex education and reliable information about consent, mental capacity and sexual and reproductive health.

The Sexuality Alliance, which advocates for the sexual and reproductive rights of disabled young people living with life-shortening conditions, has worked with young people and carers to develop resources for these conversations.

These resources encourage carers to reflect on their own attitudes and provide practical information to help young people understand their rights and communicate their wishes.

A changing idea of adulthood

Medical advances have changed what is possible for many young people with life-shortening conditions. But extending life is only part of the story.

As more young people reach adulthood, support needs to reflect the lives they are actually living, rather than assumptions about how long they will live.

That means recognising relationships, intimacy and sexual and reproductive choices as part of adulthood for disabled young people, alongside the medical and practical support they need.

Their futures may still contain uncertainty. But uncertainty about how long someone will live does not remove their right to make choices about how they live.