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Caregiver Self-Care Strategies for Counteracting Compassion Fatigue

This presentation illustrates the problems compassion fatigue can create for caregivers of disabled children and then covers the different strategies to help counteract it.
by

Nathan Jamison

on 1 July 2013

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Transcript of Caregiver Self-Care Strategies for Counteracting Compassion Fatigue

Caregiver Self-Care Strategies for Counteracting Compassion Fatigue
Counteracting What?
Biological Symptoms
Psychological Symptoms
- Critical of Others
- Apathetic
- Diminished Sense of Accomplishment
- Depression
- Anxiety
- Feelings of Isolation
- Loss of Interest in what was once Enjoyable
- Recurrent Thoughts and Images related to the Problems of Others
Webster Marketon, J. I., & Glaser, R. (2008). Stress hormones and immune function. Cellular immunology, 252(1), 16-26.
Social Symptoms
- Abuse of Substances or Food
- Spending Less Time with Friends or Family
- Overuse of Sarcasm
- Overly Cynical
- Feelings that Others are Incompetent
Caregiver Burnout:
Sometimes used interchangeably with "compassion fatigue". Some would argue that the terms are separate and that it is compassion fatigue that leads to caregiver burnout but also even vice-versa. Basically no agreed upon definition in the research but for the most part all studies would agree that it is a natural response to the stresses of caregiving that can overwhelm if unchecked.
Compassion Fatigue:

Charles Figley defines compassion fatigue as "a state of exhaustion and dysfunction -
biologically
,
psychologically
, and
socially
- as a result of prolonged exposure to [caregiver] stress and all that it evokes."
Caregiver Burden:
The time and financial demands associated with caring for a child with disability that constrain the parental social role. Another term that could be used interchangeably with compassion fatigue.
- Fatigue
- Exhaustion
- Weight Changes
- Muscle Tightness
- Gastrointestinal Complaints
- Rapid Pulse
- Hypertension
- Headache
- Sleep Disturbances
References:
Lynch, S. H., & Lobo, M. L. (2012). Compassion fatigue in family caregivers: a Wilsonian concept analysis. Journal of Advanced Nursing, 68(9), 2125-2134.
Murphy, N. A., Christian, B., Caplin, D. A., & Young, P. C. (2007). The health of caregivers for children with disabilities: caregiver perspectives. Child: care, health and development, 33(2), 180-187.
McManus, B. M., Carle, A., Acevedo-Garcia, D., Ganz, M., Hauser-Cram, P., & McCormick, M. (2011). Modeling the social determinants of caregiver burden among families of children with developmental disabilities. American journal on intellectual and developmental disabilities, 116(3), 246-260.
(Lynch & Lobo, 2012)
(Lynch & Lobo, 2012)
(Lynch & Lobo, 2012)
(McManus et al., 2011)
Extreme and prolonged periods of stress, through the action of stress hormones, has a detrimental effect on the immune function.
The detrimental effects studied include:
- delayed wound healing
- impaired responses to vaccinations
- raised chance of developing cancer
- increased progression of cancer
(Marketon & Glaser, 2008)
Psychological overload may cause caregivers to lose objectivity and the ability to be helpful
(Lynch & Lobo, 2012)
(Lynch & Lobo, 2012)
Other Symptoms
Professional:
Spiritual:
- Job Dissatisfaction
- Inappropriate Judgment
- Overworking
- Doubts of Values and Beliefs
- Inability to Feel Joy
(Lynch & Lobo, 2012)
(Lynch & Lobo, 2012)
Reports from Caregivers of Children with Disabilities
Researchers in Utah hosted focus groups for caregivers of children with different disabilities in order to uncover commonly shared experiences.
- the stress of caregiving
- negative impact on caregiver health
- sharing the burden
- worry about the future
- caregiver coping strategies
Common responses were categorized in five different themes:
The Stress of Caregiving
- Caregivers felt they lacked control of day-to-day events.
"I'm always waiting for the other shoe to drop."
- Caregiving can be unpredictable and uncontrollable
"You get a phone call in the middle of your trip and it just goes down the tube. You're never off the hook."
- Having to continually advocate for the child with a disability is also major source of stress for caregivers
"I have [had] to learn things other people don't have to learn, to develop relationships with teachers and doctors, and to make sure that services are available for my child. This creates a lot of anxiety for me."
Negative Impact on Caregiver Health
- In general, participants felt that the physical challenges of caregiving were greater during the early years but that their health suffered more later in their lives.
- Although parents acknowledged the importance of keeping up with their own health, most reported having hardly anything left at the end of the day to invest in themselves.
"We often postpone treating ourselves because we look at our kids and think, now there's someone with a problem. I don't have that big of a problem, so I tell myself to stop whining."
- Most caregivers described one or more chronic physical ailments that they believe were caused by the long-term effects of caregiving.
Sharing the Burden
- Mothers from this study were responsible for most, if not all of the care at home.
"My husband is gone at work most of the time, so he doesn't see or have to deal with all the things I have to do to take care of our daughter."
- Although parents felt that time away from caregiving responsibilities would minimize their burnout, most lacked the respite care that would allow for any such breaks.
- Leaving children overnight also presented challenges.
"It's almost not worth it because of all the time and effort I have to put in to prepare for it."
(Murphy, Christian, Caplin, & Young, 2006)
(Murphy, Christian, Caplin, & Young, 2006)
(Murphy, Christian, Caplin, & Young, 2006)
(Murphy, Christian, Caplin, & Young, 2006)
Worry About the Future
- The financial burden of continuing medical expenses was another reported major source of stress.
- Caregivers universally expressed concerns of what would happen to their children if they weren't around.
"My main long-term anxiety is what will happen to their children if they were to outlive their parents."
- There was particular concern among caregivers about the absence of structured community programs when their children aged out of public education programs

(Murphy, Christian, Caplin, & Young, 2006)
Self-Care Strategies
Caregivers from the study mentioned in the last frame reported some of their coping strategies:

- take 10-15 min breaks
- take mini-naps
- have a good cry
- companionship with pets
- shopping
- eating lots of chocolate
- make a quick phone call to a friend
- some describe a positive and enduring impact on the entire family, feeling like they all had become more compassionate and more accepting and open to other people.
- feeling fortunate for their unique parenting experience
"It gives me a good feeling to know that I can take care of a child with disabilities."
Positive reports by the same caregivers included:
(Murphy, Christian, Caplin, & Young, 2006)
(Murphy, Christian, Caplin, & Young, 2006)
Self-Care Plan Worksheet:
http://socialworktech.com/intervention/making-a-self-care-plan/
Self-Care for Parents from parentline.org.au:
http://www.parentline.org.au/Page.aspx?element=823&category=9
Self-Care Strategies Parents from louisville.edu:
http://louisville.edu/education/kyautismtraining/resources/ky-plans-november-2010-issue/November_SelfCareStrategiesforParents.pdf
Website Sources:
Respite Care
- give yourself a break

Dealing with Extreme Feelings
- acknowledge them and don't feel guilty for having them. they are normal and will lessen as long as you do not suppress or deny them

Advocate
- be assertive and stand up for proper and equal treatment for your children whenever possible

Be Easy on Yourself
- avoid the superhero mentality because parenting is like a life-long marathon. pace yourself!

Counseling
- talk one-on-one with someone who understands and who will provide encouragement, support, & ideas to improve your situation.

Join a Support Group
- the same benefits from counseling only you get help from a group of peers instead of just one person.

Plan for Good Health
- by exercising and eating healthy
Suggested Strategies from louisville.edu
Suggested Strategies from parentline.org.au
Physical Activity
- jogging, swimming, gym, yoga, pilates, dance
(try and be creative like dancing while vacuuming or doing lunges while walking the dog!)
Relaxation
- deep breathing, meditation/mindfulness (to focus on present), listen to music, bubble bath
Emotional/Social
- dates with loved one, phone calls, email, and social networking with friend and family, create something (journal, diary, art), see a counselor
Intellectual
- reading, learning, taking up hobbies (i.e. book club, gardening, scrap booking, photography)
Spiritual
- joining a faith-based group or attending church, enjoying nature, meditation/yoga, volunteering
1. In the "Mind", "Body", and "Spirit" bubbles write down a few ways you can take care of each respectively.

2. Then in the "Supportive People in my Life" box list those who you can reach out to when you need help

3. Now write down the things you want to accomplish with your self-care plan

4. Refer to your plan whenever you find yourself in a funk. Hang it someplace where you'll be reminded by it daily!
- those in marriages found that their experiences brought them closer together with open communication and sharing of responsibilities
Work with your child or loved one to have a semi-structured period of independent playtime each day. It is suggested that you begin with shorter periods of time at first, working your way up for 30-45 minutes using an egg timer or cell phone to keep track of time. Give your child one or two activities explaining that they can play by themselves for X amount of minutes (and to come get you if there is an emergency of course!) Make sure you use this time to relax and NOT do other stuff!
(spectrumpsychological.net)
10 Self-Care Tips for Parents with Kids on the Spectrum from spectrumpsychological.net:
http://www.spectrumpsychological.net/1/post/2012/09/10-self-care-tips-for-parents-with-kids-on-the-spectrum.html
Encourage Independent Playtime
- Fathers from the study reported that they often
"feel the financial stress"
from their roles as the main wage earner.
By Nathan Jamison, MSW
Full transcript