Many parents of disabled children have thoughts of suicide, study finds
By Louise Kinross
Over 40 per cent of 750 British parents had thought about or planned suicide while caring for their child with disabilities or chronic illness, according to a new study in the Archives of Suicide Research. "This isn't shocking for anyone who works with parent carers," says lead author Siobhan O'Dwyer, associate professor in Adult Social Care at the University of Birmingham. "What's more surprising is that the numbers aren't higher. It's also surprising that parents have been walking around feeling like this, and no one has known." Over half of those with suicidal thoughts or attempts in the study hadn't told anyone. "No one has known to ask," Siobhan says. "That's what I find really shocking." We spoke about the study, which is the first of its kind. Four parent carers were part of the research team.
BLOOM: There have been so many studies in the last 20 years about increased depression and anxiety in parents of children with disabilities. Why is there so little research on suicidality in this group?
Siobhan O'Dwyer: I think it's because we struggle as human beings to hold competing ideas in our head—that you can love your child and want the best in the world for them, and still be so overwhelmed that you're thinking about ending your own life. Historically, suicide has been a really sensitive issue and something people are scared to talk about.
BLOOM: Would your findings make parent caregivers a high-risk population for suicide?
Siobhan O'Dwyer: When policy makers think about which groups should be the priority for suicide prevention initiatives, they usually focus on how many people have died by suicide. But there isn't any data on deaths by suicide in parent carers, so it's more difficult to convince policy makers that they should be a priority.
We do know that the percentage of parent carers who have thoughts of suicide is much higher than the general population, and it's also much higher than other groups of family carers.
The fact that over 40 per cent of parent carers are thinking about suicide is a sign of really high levels of distress. [This] is a clear indication that whatever we're doing to support disabled children and their families isn't working.
Policy makers often forget these carers because they're parents. They forget that being the parent of a disabled child is very different from parenting a child without a disability.
BLOOM: Your study found significant risk factors for suicidality in parents were depression, feeling trapped, unhealthy coping, and a mental health diagnosis prior to caring. Can you describe what is referred to as 'entrapment' in the study?
Siobhan O'Dwyer: Entrapment is an academic word that means feeling so trapped by your circumstances that suicide feels like the only way out. Parent carers talk about feeling trapped in the caring role, and not having any way to change their situation, or any option for handing over some of the care. Remember, for most parent carers, this is a lifetime role.
If you care for a parent with dementia, perhaps that's for five or 10 years. Also, when caring for older relatives, there are socially acceptable ways to reduce your caring role. You can bring in care workers, or move your parent into a care facility. But for parent carers—and particularly those in the UK—there are few options for relinquishing care of a child with disabilities and little in the way of regular, high quality support and respite.
BLOOM: The study talked about dysfunctional coping as a risk factor. What does that mean?
Siobhan O'Dwyer: That would be things like drinking too much, using illegal substances or misusing over-the-counter medications, and overeating. Things that feel good in the moment, but long-term are unhealthy. What parents tell us is 'I have to do the dysfunctional stuff, because where is the time or money to exercise or meditate or see a therapist?'
In the National Health Service the waiting list to see a psychologist is years, not weeks or months. So some of the less healthy coping strategies that parent carers use are out of necessity. It's the only way they have to unwind or release the stress.
BLOOM: Who needs to hear about this study?
Siobhan O'Dwyer: The people who really need to pay attention are policy makers and the government. They determine where the money goes and whether there is access to, and continuity of, services.
The problem here is not being the parent of a disabled child. The child is not the problem. The disability is not the problem. It's the system that makes it almost impossible for parents to get their kids the support and resources they need in order to have the same opportunities as other children.
Parents constantly have to battle the system and are often forced to fight the same battle over and over again because the system changes, different agencies aren't talking to each other, or their child ages out of children's services and needs support as an adult. It's a constant fight to secure even the most basic of services.
If we're going to prevent deaths by suicide and reduce the number of parents who are thinking about suicide, we need to fix this broken system.
BLOOM: I was going to ask what clinicians can do. But it seems that often their hands are tied in offering supports due to lack of funding.
Siobhan O'Dwyer: For clinicians, a key finding was that more than half of parent carers who had thought about suicide had never told anyone, until they told us. They're terrified that if they tell someone they're thinking about suicide, their child will be taken away or they'll be hospitalized against their will. We need to ask parents about suicide in a safe way and in a way that doesn't penalize them for having these thoughts.
But clinicians can only do so much. The onus is on policy makers and governments to adequately fund and staff services for disabled children and their families.
BLOOM: I found it telling that two-thirds of study participants had left work to care for their child.
Siobhan O'Dwyer: Having to give up your job is something that contributes to that feeling of being trapped. If you have nothing outside your home that gives you an identity beyond being a parent carer, you can quickly lose your sense of self and your world gets very small.
One of the upsides of having a job is seeing and talking to people. When you leave work, you lose those social connections and that sense of purpose and identity. And financially, families often struggle without the income that a job brings. Some end up living in poverty. This is particularly relevant for older parents—who won't have been paying into pension funds if they've had to leave work to care. So being forced to give up work has really serious implications for parent carers.
BLOOM: What are some of the key system changes needed, including access to publicly funded therapy?
Siobhan O'Dwyer: There's a whole host of things that need to happen. One is regular respite. Respite where someone else comes in to the home and offers high quality care to the child while the parent has a break. Many parents don't get any respite at all. For those that do, it's not regular enough to be of any benefit. Also, the care is often delivered by inexperienced people and when the parent comes back, things are worse than when they left, negating any benefit they might have got from taking that break.
We also need to ensure that children with disabilities get access to appropriate education in a timely way. Parents often have a massive battle to get specialist educational support for their children. They face similar battles getting access to services like physiotherapy, hydrotherapy, speech and language therapy, and equipment like wheelchairs and stairlifts.
And then there are the broader issues around stigma. So many parent carers—particularly of children who have autism or [intellectual] disabilities—have told us about professionals, family members or friends who think their child's condition is just the result of bad parenting. Tackling the stigma of disabilities—and addressing issues of accessibility for people with disabilities more generally—would go a long way to mitigating the impact on parent carers.
BLOOM: But supports have to continue into adulthood.
Siobhan O'Dwyer: Yes, absolutely. When children with disabilities age out of children's services they don't stop being disabled and their need for support doesn't stop. As children become adults, parent carers often face additional battles to help their kids get access to appropriate housing, further education, and job opportunities. We need to take a lifespan perspective. For a lot of parents, the caring role actually increases when services are taken away in adulthood.
As parents get older, there's an incredible fear of who will take care of my child when I die? How do I make sure they're being taken care of properly, that the care they receive is high quality? We've certainly seen examples in the UK of older parents who have killed themselves and their adult child because that seemed like a better option than leaving their child behind when they died, which is heartbreaking.
BLOOM: Given how common suicidal thoughts were in parents, is it unusual that no one tracks death by suicide in this population?
Siobhan O'Dwyer: The data collected when someone dies by suicide doesn't focus on disability or caregiving status. We're advocating for change, but it's going to take time.
In Canada, if you or someone you know is in immediate danger, please call 9-1-1. If you or someone you know is thinking about suicide, call or text 9-8-8. Help is available 24 hours a day, 7 days a week. Like this content? Sign up for our monthly BLOOM e-letter, follow @LouiseKinross on Twitter, or watch our A Family Like Mine video series.
