Sunday, October 7, 2012

Down syndrome, Coping and Caregiver Stress (31 for 21, Day 7)

I've touched on this topic before, during the last 31 for 21 Challenge.  Entitled "Be Gentle" I outlined the means to deal with family stressors a little more proactively and more successfully.  As I said at the time, I have not mastered all of the points listed there; however I can say that I employ many of them in my day to day life and I find them very helpful.

Parts of my life have been stressful and (so far) raising a special needs child has been slightly more stressful than raising my other two typical children. I also know that what creates stress for me, may not do the same for my husband and vice versa.  This raised a few questions and naturally, I went looking for a few studies to see what other people were experiencing.

From the studies I looked at, there were the following conclusions:

  • Stress levels were lower in the families with Down syndrome (compared to Williams, Fragile X and Prader-Willi syndromes) 
  • Stress levels were lower in families with Down syndrome, compared to families with autism
  • Although mothers of children with autism scored higher stress levels than fathers of children with autism, no differences were seen in the stress levels of parents of children with Down syndrome and parents of typically developing children
  • Parents of children with autism and Down syndrome tend to use emotion-oriented coping, while parents of typical children tend to employ more task-oriented coping.
  • Family stress levels were related to the child's characteristics and the parent's perceived levels of control.
  • Parents who experienced high stress or low stress used different behavioural themes to describe their stress
  • Family resiliency is associated with positive appraisal, amount of resources and coping/problem solving skills.
  • Hope, in the face of uncertainty is important in order to adapt
  • Caregivers often struggle with hope, especially when faced with reaching goals for their child
  • Outlook directly relates to the coping mechanisms that are employed.  Those that ruminate and blame themselves generally have depressive symptoms while those that employ positive reappraisal have positive outlooks and feel less stressed.

Parents with both typical children and children with Down syndrome felt that:

  • they had more care giving difficulties
  • more child-related stress, such as distractibility, demandingness, nonacceptance
  • more parent related stress, such as feelings of incompetence, depression, role-restriction and health problems.
  • more partner related stress, related to both mother and father's stress levels.


  • felt their stress was related to caregiving difficulties with their children
  • who had primary childcare responsibilities reported more difficulties with health, role restriction and spousal support. 


  • felt their stress was more related to their child's perceived status (Down syndrome vs typical)
  • who had primary childcare responsibilities reported fewer difficulties with attachment and parental compliance. 

Truly, these points simply illustrate with I've suspected all along;  your coping is unique to you, however the methods you employ will determine how successful you are at relieving stress.

To be honest, I feel guilty sometimes because my son does not stress me out all that much.  How others see him and making sure that he gets to all of his appointments tends to stress me out more.  It's nice to see the data backs me up;  that will certainly assist in helping me re-frame and reappraise any hiccups that come our way.


Dabrowska, A., and E. Pisula. "Parenting Stress and Coping Styles in Mothers and Fathers of Pre-school Children with Autism and Down Syndrome." Journal of Intellectual Disability Research 54.3 (2010): 266-80. Print.

Hall, H. R., S. L. Neely-Barnes, J. C. Graff, T. E. Krcek, R. J. Roberts, and J. S. Hankins. "Parental Stress in Families of Children with a Genetic Disorder/disability and the Resiliency Model of Family Stress, Adjustment, and Adaptation." Issues in Comprehensive Pediatric Nursing 35.1 (2012): 24-44. Print.

Lanfranchi, S., and R. Vianello. "Stress, Locus of Control, and Family Cohesion and Adaptability in Parents of Children with Down, Williams, Fragile X, and Prader-Willi Syndromes." American Journal of Intellectual and Developmental Disabilities 117.2 (2012): 207-24. Print.

Roach, M. A., Orsmond,G. I. and Barratt, M. S. . "Mothers and Fathers of Children with Down Syndrome: Parental Stress and Involvement in Childcare." American Journal of Mental Retardation 104.5 (1999): 422-36. Print.

Truitt, M., B. Biesecker, G. Capone, T. Bailey, and L. Erby. "The Role of Hope in Adaptation to Uncertainty: The Experience of Caregivers of Children with Down Syndrome." Patient Education and Counselling 87.2 (2012): 233-38. Print.

Van Der Veek, S. M., V. Kraaij, and N. Garnefski. "Down or Up? Explaining Positive and Negative Emotions in Parents of Children with Down's Syndrome: Goals, Cognitive Coping, and Resources." American Journal of Intellectual and Developmental Disabilities 34.3 (2009): 216-29. Print.

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  1. I don't think there's anything that stresses me about Babe's Ds other than how the world will perceive and include her. Or, it doesn't as much stress me as it makes me confrontational and, apparently, scary. Frankly, I don't know which will provide a better outcome, me being stressed or me scaring the shit out of my fellow men (I do have those horns you know, so there's that...)

    1. That is pretty much it for me, except for Wy's upcoming surgery that is. You will like Sunday's post. I can feel it in my bones. ;) I have horns too; I just sand them off *most* of the time.

  2. Very interesting article about caregiver stress among the developmentally disabled population. I continue to look for ways to reduce this type of stress and appreciate the resources you identify here.
    Nancy Green


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