Very high stress levels in 17 per cent of Canadians who care for a child or adult with a health condition or disability was flagged as a significant concern in a report on mental health indicators by the Mental Health Commission of Canada (see page 8) yesterday.
There isn't anything new or surprising about this. In fact, I'm surprised that the number is so low.
There's more than a decade of research showing parents of kids with disabilities have higher rates of stress and depression than parents raising typical kids, as well as poorer physical health (See the bottom of page 4 of this 2013 Australian report for a review on the mental health studies). One study found the level of chronic stress experienced by mothers of youth and adults with autism mirrors that seen in combat soldiers.
The worry is felt by siblings, too. A 2014 study in Pediatrics found that siblings of children with disabilities were almost three times more likely to have parent-reported emotional and behavioural problems. "Growing up with a child with a disability is a risk factor for mental-health issues," lead investigator Dr. Anthony Goudie told BLOOM.
When a group of Australian researchers were trying to come up with a practical resource to support mental wellbeing in parents of kids with disabilities, they could only find one document online targeted to this population.
They've since released Wellbeing for Parents and Carers, a resource for parents caring for children and adults with disabilities. It was put together based on interviews with parents.
They identify these ways to help promote mental wellbeing:
Practise self-care.
Ask yourself 'How am I doing?'
Ask for help.
Try not to be too hard on yourself.
Recognize your achievements.
Plan time for yourself.
Take a break from caring.
Build supportive relationships.
Talk about how you feel.
I know some of these strategies will sound impossible to our readers, especially "practise self-care, plan time for yourself and take a break from caring."
"Ask for help" is also a really tough one, because as parents of kids with disabilities we don't want to create the perception that what we do is hard (lest people interpret that to mean we love our kids any less, or that our kids somehow "are less").
I'm tired of reading study after study, year after year, about how parents like us are at risk. We have ENOUGH evidence. In addition to the scientific studies, there are regular news stories about parents who reach breaking point.
The report on Canadian mental-health indicators notes that "caregivers are an invaluable asset to formal health care and social service systems in supporting individuals with physical and/or mental health conditions."
They got that right.
So why isn't there more action on giving parents the respite and supports they need to better take care of themselves? So that they don't become mentally or physically ill?
I know a number of families whose children require the level of care received in an ICU at home. Yet they receive a weekly allotment of nursing care that gives them about six hours a night. Do most of us cope well on six hours of sleep a night?
When I saw the news story about high stress in Canadian caregivers being flagged as a mental-health concern I felt a rush of excitement. But then I looked back over the years and years of studies related to parenting kids with disabilities. I remember reporting on one of them by our then chief of medical staff back in 2005. And I don't expect any change.
Posts
6 comments:
"I'm tired of reading study after study, year after year, about how parents like us are at risk." Oh, Lord---me too! What a waste of time and money to restate the obvious yet again, along with those pallid suggestions that always avoid the real bottom line: Ample financial resources for truly high quality support of all kinds, and ongoing research on how to make that ever more individualized, sensitive and
creative. I really feel the authors
of such studies should be taken to task for their lazy superficiality.
"Ask for help" is also a really tough one, because as parents of kids with disabilities we don't want to create the perception that what we do is hard (lest people interpret that to mean we love our kids any less, or that our kids somehow "are less")."
Well: asking for help is very tough (speaking from the US perspective) because there is so *little* help available. Parents are expected to be superhuman and do it all by themselves. A combination of budget cuts, lack of trained personnel, personnel who claim to be trained but are sometimes ignorant and unhelpful, lack of programs and facilities, years-long waiting lists for available spots, the list goes on and on.
I too am surprised that "only" 17% of parents of special children report being stressed and distressed.
Hi A -- Yes!
Hi Anonymous -- thanks for posting. I think the situation is similar here in Canada.
I was thinking more in terms of asking other people (friends, family) for help, and how challenging it can be to do that.
Yes, I've contacted the commission for more info on the caregiving indicator. It was for people caring for children or adults with disabilities or medical conditions. It seemed to suggest that 17 per cent had very high stress, and another chunk had "stress." But I think many parents of kids with disabilities would say "high stress!" I'll post if I learn more.
Wanted to add that since writing the piece I spoke to one of my friends about the nursing hours for medically complex kids. She explained that when she gets 6 hours of nursing care, she is lucky to get 5 hours of actual sleep -- because the 6 hours includes an update when the nurse arrives, and an update before she leaves.
I suspect the incidences are under reported. Due to stigma and possibly wanting to be able to do it all, I think some people do not express that they are feeling stressed, depressed and overwhelmed. Statistically, men also reportedly have less stress, anxiety and depression, but how many men actually just won't admit or doesn't recognize that they are depressed?
-A non-parent interested in disability and mental health issues.
Post a Comment