When children become caregivers, who cares for them?

Sanyu Musoke was barely out of her teen years when she found herself with responsibilities coming from all directions. 

Her mother already needed full-time cognitive care when, in 2015, her father was in a horrific car crash. It left him disabled and Ms. Musoke in a position that has a legal definition in the United Kingdom but felt anything but clear to her: young carer.

From negotiating with doctors and navigating medical equipment, to grocery shopping and ensuring siblings’ homework was completed, her new purview covered nearly everything. She remembers struggling to learn to fold her father’s wheelchair.

“I suddenly had to care for a physical disability as well as a mental disability,” says Ms. Musoke, who dropped out of college for a time. “It’s like, does my father have the equipment he needs, are the bathrooms OK, and what are these new medications, and has my mother taken her own medications?”

The obligations and responsibilities add up for young carers. Many find themselves falling behind in school or forgoing college. They have more frequent mental health issues. And they often feel they cannot ask for help, perhaps due to cultural expectations or social stigmas.

So now, Ms. Musoke is using her unique understanding to help young carers. 

Through a social enterprise charity she founded named Yucan, she aims to give young carers mental and emotional support, help educate school staffs about how to identify carers in their midst, and even train carers for the workforce later on. Yucan also works to reach those from underrepresented communities, such as ethnic minorities and those caring for relatives with alcohol or drug addictions.

Such nonprofits and charities are vitally needed, particularly as the number of young people needing support has grown and funding is becoming more limited, says Andy McGowan, policy and practice manager at Carers Trust, a charity that supports unpaid carers. “Yucan has done a lot of work in trying to reach those groups who are currently not being reached,” he says. “These carers are more often hidden from services, and are underrepresented.”

Caregivers under pressure

When Ms. Musoke thinks of her teen years, she remembers loneliness, particularly as she stepped into the role of caregiving for her mentally ill mother and, later, her disabled father. For a while, she left school to focus on helping her family.

“Not only am I dealing with all that, but teenagers are trying to figure out life and you think the whole world is against you,” says Ms. Musoke. “Girls are going shopping with their moms and going to prom, and it’s like, ‘Man, I wish I had what Julie had.’”

Ms. Musoke’s plight is common, according to British charities that assist young carers. In the United Kingdom, about a million young people under 18 years old spend more than 50 hours a week caring for family members struggling with illness, disability, addiction, or other afflictions, according to Carers Trust. Some carers are extremely young: Roughly 15,000 of them are children, with 3,000 just 5 to 9 years old.

Ms. Musoke points out that young carers from ethnically diverse backgrounds face even greater challenges. Her own parents emigrated from Uganda, and she was born in east London and grew up facing complexities and responsibilities outside even the traditional definition of young carer.

“You’re even maybe doing the parent evenings [at school for younger siblings], or translating for a parent who doesn’t speak English,” says Ms. Musoke. “Or it’s the cultural expectation of looking after elders in your families or grandparents.”

Such circumstances have a devastating impact on young carers’ well-being, according to research submitted to the first-ever parliamentary inquiry on their plight. Carers miss an average of 30 days of school a year, go on to college in smaller numbers, and have more trouble finding jobs later in life. They also have a higher prevalence of self-harm and are twice as likely to attempt suicide than noncarers.

“Young carers and young adult carers need to be recognised as a priority group within financial support schemes, such as bursaries, grants or scholarships,” Baowen Xue, a social epidemiologist at University College London and one of the researchers involved, told the Monitor in an email. 

But support for these young people is wildly uneven across the U.K., the parliamentary inquiry found. Duncan Baker, a member of Parliament and the chair of the inquiry group, says the government must do much more to identify and support young carers, and ultimately reduce their numbers. 

At present, resources and funding to support the charities are down, just as more young carers are being identified and those charities are under pressure to do more, says Mr. McGowan of Carers Trust.

“Kids still need to be kids”

The support that charities like Yucan provide to young carers comes both indirectly and directly. 

On one track, Yucan hosts “awareness assemblies” and training workshops to help schools identify young carers, as educators are often the first and only point of outside contact for these children. The parliamentary inquiry found that some young carers are left to cope alone for a decade, and the average waiting time to get support is three years.

“Teachers often identify the boys because they’re very overt – as in Johnny’s punching a wall and he has a support worker,” says Ms. Musoke. “But the girls can be really overlooked in their mental health.”

More directly, Yucan’s youth camps help carers take a break from their responsibilities, perhaps by giving them a chance to learn how to skateboard or arrange flowers. The actor Michael Sheen has supported one of their campaigns, and Ms. Musoke has invited Sandro Farmhouse, a celebrity cake-maker from “The Great British Bake Off,” to run a baking workshop with them.

“You’re 13 and running a household,” Ms. Musoke says. “With the stress of what they’re going through, kids still need to be kids and have a bit of fun.”

She’s also found herself needing to counsel disadvantaged and minority families about a systemic distrust of social services, such as a fear that a parent will be investigated if their child is caught grocery shopping for the family. There is shame and stigma, she says.

“We’re protecting them as well as supporting them to know that it’s OK to receive the help.”