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Disability Caregiving Can Be Health Hazard, Study Finds

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Parents of children with developmental disabilities are experiencing health consequences stemming from their caregiving responsibilities, a first-of-its-kind study suggests.

Researchers found that parents of those with developmental disabilities have higher blood pressure than those with typically developing children. Given the risk of cardiovascular disease facing such parents, the finding “reinforces the notion that caregiving is hazardous to one’s health,” researchers report in the study published this month in the journal Research in Developmental Disabilities.

For the study, researchers followed a group of 35 parents of children with developmental disabilities and a control group of 30 other moms and dads. All of the parents wore a blood pressure monitor for 24 hours and each responded to questions about themselves, their stress level, the types of behaviors their child displays and the extent of support they receive from others.

Overall parents of kids with developmental disabilities reported a higher level of perceived stress, more challenging behaviors and less social support. What’s more, the parents of kids with special needs had higher blood pressure on average at all points during the 24-hour period, the study indicates.

Significantly, when researchers controlled for various factors, they found that challenging behaviors and stress level were not associated with the blood pressure level recorded, but the amount of social support was.

“We found these parents, who were mostly caring for children with autism and Down’s syndrome, were more stressed and had less social support had higher blood pressure than other parents,” said Stephen Gallagher of the University of Limerick in Ireland who led the study. “More importantly it was reporting of lower social support that seemed to explain the higher blood pressure in these caring parents.”

The study is the first to directly measure and compare the blood pressure of these two groups of parents, researchers said.

Gallagher and his colleagues said the findings highlight the need for better supports for caregivers.

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Comments (15 Responses)

  1. Barb says:

    Wow! Another study that tells us what we already know. Now give us some supports so we won’t have these health issues. What a waste of time and money. Just MHO.

  2. Laurie says:

    I’m glad to get this information. Our child has special needs and is an only child, so I didn’t know how our health risks stacked up against parents of typical children. This makes me want to pay more attention to our health to make sure we are around for our child for as long as possible.

  3. Glen S says:

    Barb, do we already know it? First, the point of a study is to help determine what supports are needed. Resources are limited. The liberal minded belief that we can either keep taking on debt as a nation or increase taxes a section of the population has no basis in reality. So the answer is not more money. The answer is use money wiser. In order to use money wiser we need data. Second, no one gives better can for our loved ones than we do. Why would we so willingly give into all of the state’s demands just for a few hours each week of “help.”

    My point is that we need to be careful of what we wish. The state can give and just as easily take away. And the strings attached to their “gifts” are often more trouble than the gift is worth.

  4. Esther Ward says:

    Note that SOCIAL supports were lacking. It common for parents to lose the friendships they had in the past when they have a child with a disability. Aside from the lack of time and energy to sustain social relationships, friends often do not understand the challenges the parents are facing, and pull away when their support is needed most. It has already been well established that people with solid friendships live longer (Brigham Young University study). There should be more awareness training made available to the public on this issue.

  5. Beverly Maurice says:

    I found the above to be logical and accurate, however, I believe a stronger case would be made if parents of children with trachs and feeding tubes, children with CP and MD were included. As a developmental play therapist, I go into many homes each week where the families are not only stressed but literally exhausted (both of which will compromise their immune systems). I sometimes find these other families are even more socially isolated as their time is consumed by either direct care giving or constant medical appointments, hospitalizations, etc.

  6. Johnna Wheeler says:

    I cared for disabled adults in a staffed residence for 10 years. When I didn’t like the way things were done, made a change and cared for two ladies who lived in my home as part of our family for 15 years. I called them my “over-sized, fully functioning baby-dolls”. They were total care. When I got my first client, Shannon, a 80 pound, very petite woman of 21 years old, both my husbands family and my family said “She makes us uncomfortable”. Friends vanished. We were no longer invited to weddings, showers, holiday or family celebrations, parties, etc. Eight of the last nine churches we attended, each for anywhere from 3 to 15 months, asked us in various ways to dis-fellowship. A call was made by the preacher to the fire department complaining that Shannons’ wheelchair was blocking an exit; in a sanctuary that seated 700 people, with 6 sets of double doors, and Shannon was in an isle that didn’t go anywhere. At another church the assistant minister called adult protective services and said that Shannon was sitting in her wheelchair during service in a diaper, with no pants. It was a lie! Shannon didn’t even own shorts. What it was really all about was “liability”. Their wheelchair elevator didn’t work, and so I had to carry Shannon from the parking lot, up 3 flights of steps to the sanctuary and back to the parking log every Sunday, in addition to having to also carry her wheelchair up those back steps. We were an embarrassment. When JJ moved in, a 32 year old, 120 pound African American woman, things only got worse for us socially. No one came to our home when invited and we were not invited anywhere. When we went out to eat in a restaurant, several times people would get in our face and say nasty things to us because we were sitting there eating and not feeding JJ. They didn’t believe me when I told them that I fed her in the car before we came in, until I lifted her shirt and showed them her G-tube. She can’t eat by mouth I explained, because she can’t swallow. They walked away embarrassed and angry. One thing this study didn’t look at is the incidence of prolapse and hernia in people who care for the disabled. Using my body to care for and make the world accessible to people with disabilities for 25 years has made me disabled. What’s worse is that I was misdiagnosed by 19 different doctors during a period of 20 years. Then it was discovered that I had a large abdominal hernia and 4 prolapses all at once. No doctor had ever seen that before, so they were in disbelief and said I was a hypochondriac. Unable to continue to give care, I lost my “job”. Now disabled, I refuse to go on SSDI. My body may be broken, but my mind still works, so this year I started a business online. Additionally, my husband and I adopted two daughters with Downs Syndrome, because we lost 4 babies when we were in our late 20′s, and were unable to have our own. Now ages 25 and 13, Lisa and Mandy are the sunshine in my day. Raising any child will raise your blood pressure, and I find that the frustration is different with them then it is with regular kids. There are things I will never have to confront, like teaching them to drive, dating, college, planning a wedding, etc. Their ability to make bad choices and the hormones work just fine, but still, for me it isn’t like the battles I hear other parents share about raising their children. My girls are with me 24/7, because I home school them, and I wouldn’t have it any other way. They will never grow up and move out, and that’s just how I want it. That’s our story, anyway. You may request friendship with me on my Facebook page. I’d be delighted to meet you.

  7. KA101 says:

    Well, I’m sure being a care-provider can be a health hazard. I’ve had to talk people through meltdowns at 2 AM–quite easy compared to what a parent would do–and that doesn’t do my blood pressure any good.

    That said: studies confirming/denying the group perception can be worthwhile, because sometimes the group gets it wrong. Unfortunately, we can increase taxes–goodness knows there are segments of the population that can afford to pay them–and that funding may well be useful to help build social infrastructure.

    (Which, by encouraging community members to support and be supported by one another, might build the social bonds that discourage mass shooters.)

    One thing: I don’t pretend to know what Ms. Wheeler’s charges think about their situation–and I’m not sure whether those are their real names being used–but I know that I’d be extremely edgy about being referenced as an oversized, fully functioning baby doll. Dolls are possessions and toys, rather than people.

    Thanks for your time and consideration.

  8. VMGillen says:

    I am amazed this is called a “first of its kind study.”

    I am a graduate student in disability studies, and just finished a course called Disability & the Family Life Cycle. Trust me, there are many, many, many studies.

  9. Betsy MacMichael says:

    Not at all surprising results to me. In addition to the stressors described, there is the fact that parents also have a much higher divorce rate (thus contributing to the lower social support available one would infer). Where I work we address this through our Lifetime Connections program where support circles are built and maintained; these networks of support provide social support to the caretaking families especially as they age. Betsy MacMichael

  10. Susa says:

    Johanna,
    It’s sad that you had determined your girls will never date ( why?) Also concerning that you mention they will never grow up and move out! It’s on thing to isolate yourself but please don’t restrict your kids from having a life. it’s just not about what you like or want. I have a daughter with DS and I have expectations similar to my other 4 children. I will assume she will date and take college courses, possibly marry and be happy ..I will assume this as I have with my other kids until I see otherwise. Raise your standards for the girls, then prepare to let go if or when the time comes.

  11. Martha Moyer says:

    Regarding the article about stress with caregiving. I know this is the case for me because even though I am actually past the age of retirement, I will never be able to retire and have fun like some of my friends without such responsibilities. Caregiving will follow me to my death bed. You bet caregiving for life is stressful!

  12. Holly says:

    When places like University of Mich Dentist state my daughter is only to receive dental care once every five years whether I have dental insurance or not.(nothing to do with medicaid I called them not thier policy). Having to get a lawyer just to get Community Mental Health to get her the services she is legally entitled to. Having to take her out of a non-empowered school system (Montcalm) Yes I would say my health and career has been harmed. The amount of time I spend spinning my wheels on getting someone else to do thier jobs is crazy. My daughter is very disabled. When places like MOKA say things like she is to disabled. Yes my health is gone bad. I have aged.
    Sincerely,
    mom of disabled child in west mich

  13. Gary Sweeten says:

    These stories are painful to read. I am happy to hear that there have been many studies about the stress placed on care givers by a member with a disability and or illness. We followed such families for a year to get an understanding of what they experience and what they believe would be helpful to them. I would love to share the results with all who are interested.

  14. Gary Sweeten says:

    This kind of information may be old hat to care givers but to professionals the patient disease is all that matters. What happens to the rest of the family is unimportant. Until that changes and medical professionals and insurance carriers pay to treat the entire family no one will consider providing social, spiritual and psychological support.

  15. Holly says:

    Dear Gary,
    I would love just to get my daughter properly treated. That would take 80% of my stress away. I have worked in the hospitals for 30ys. There is a huge difference in health care dependant on can you talk,walk, race, male or female and can you defend yourself, and how many family/friends are watching. It has gotten worse over the years not better. I don’t think most medical people do things out of ill intent. Its just that everything is a system now and individuals are powerless to do anything.
    Sincerely,
    mom of disabled girl in w mich.

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