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Caregiver Self Care: Compassion Fa3gue and Burnout Curriculum Development Team:

Dorothy Badry, PhD, RSW Jamie Hickey, BA, MSW (c) Faculty of Social Work University of Calgary

Project Funder: Public Health Agency of Canada (2011-‐2014)

CHILDWELFARE.CA

& Child WelfareCommunity of Practice

The Caregiver Curriculum on FASD©

Caring for Yourself: Caregiver Self-‐Care Module 3.2

Compassion Fa3gue and Burnout

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Table of contents •  Caring for the Caregiver •  Grief and Loss •  Adjus3ng Expecta3ons

Compassion fa3gue/burnout

Providing care to an individual with FASD requires a significant investment of 3me, energy and emo3on. This expenditure of energy means the caregiver must find ways to replenish their energy reserves. This is also known as “self-‐care”. The following sec3on will look at what can happen when a caregiver does not engage in self-‐care and provide some sugges3ons on how to care for yourself while providing care to someone else.


Compassion fa3gue, secondary trauma3c stress disorder or vicarious trauma3za3on are terms used to refer to a condi3on defined as “the cost a caregiver experiences as a result of caring for others.”

Compassion fa3gue/burnout Compassion fa3gue is some3mes also called “burnout”, but burnout and compassion fa3gue are not the same thing. Burnout refers to a cumula3ve stress from the demands of daily life and a state of physical, emo3onal and mental exhaus3on. Basically, burnout refers to a condi3on resul3ng from trying to do too much with too liTle, whereas compassion fa3gue refers to a condi3on that occurs when high levels of compassion and energy are expended caring for persons who are suffering or struggling.

What is compassion fa3gue? Compassion Fa3gue: •  Emo3onal or spiritual exhaus3on that results in a decline in the ability to fulfill caregiving du3es

•  Arises when high levels of compassion and energy are expended caring for others

•  Some3mes mistaken for depression or another mood disorder

•  Can be prevented and managed with good caregiver self-‐care and providing resources such as respite care and caregiver support services

What is burnout?

Burnout: •  Physical, mental and emo3onal exhaus3on resul3ng from the cumula3ve stresses of daily living

•  Results from trying to do too much with too liTle •  Frequently mimics symptoms of depression, anxiety and other mood disorders

•  Oaen results from caregivers neglec3ng their own needs

•  Is preventable by iden3fying early signs and providing appropriate caregiver interven3ons and services


Research has shown that compassion fa3gue oaen occurs when caregivers are unable to see a posi3ve outcome for the person they are caring for. This emphasizes the importance of addressing the feelings of grief and loss covered previously. Envisioning a new, hopeful, future for the individual you are caring for is one way of building resilience against compassion fa3gue.

Symptoms of compassion fa3gue •  Irritability •  Depression •  Anxiety •  Helplessness •  Hopelessness •  Lack of Enjoyment in Life •  Headaches •  Sleep Problems •  Soma3za3on (physical illness due to mental stress)

•  Increased illness •  Increase in alcohol or drug use

•  Avoidance of caregiving du3es

•  Indecisiveness (can’t make decisions)

•  Rela3onship Problems •  Nega3vity •  Feeling “numb” •  Resentment

Who is affected by compassion fa3gue?

Both caregivers and individuals requiring care are nega3vely affected by compassion fa3gue. Individuals with FASD directly rely on caregivers to provide a high level of support on a consistent basis. If the caregiver is experiencing a depressed mood and feeling hopeless they cannot possibly provide consistent, warm, empathe3c care.

Costs of compassion fa3gue

Many agencies are aware of the significant financial costs of compassion fa3gue (due to caregiver turnover and training costs) but one of the most significant losses is the loss of the knowledge, experience and passion that caregivers bring to the agency. Caregiver turnover also creates placement instability. We know from research that individuals with FASD do best when provided with consistent environments and a stable placement is essen3al to crea3ng that consistency.

Caregiver self-‐care

As you move forward as a caregiver, it is impera3ve that you care for yourself as much as you care for your child. You have a duty to safeguard yourself against compassion fa3gue and burnout. Caring for yourself is what allows you to care for your child. Leisure 3me is not a frivolous luxury, but a necessity that allows you to rest, recharge and return to your most effec3ve caregiving state.

Caregiver self-‐care Tips for avoiding caregiver burnout and compassion fa3gue: •  Make your needs known – Let people know what you need and how they can help you. •  Give up some control and say yes – Accept help when it is offered and allow yourself to give

up some control. •  Check in regularly – Choose a family member, friend or counselor to check in with regularly.

Choose somebody you can trust and be honest with. This objec3ve third party can help you “see the forest for the trees” and iden3fy when you might need addi3onal resources

•  Take Kme for yourself – U3lize available respite care op3ons and find ways to engage in ac3vi3es that you enjoy. Sefng aside even 30 minutes of 3me that is “yours” to do whatever you wish can be helpful.

•  Do not isolate yourself – visit friends, family and stay involved with the community. Do not let caregiving become the sole focus of your life

•  Laugh – Engage in conversa3ons with people that bring you joy and make you laugh. Laughter releases neurotransmiTers that reduce stress and promote relaxa3on!

•  Find the bright side – Look for small successes and opportuni3es to celebrate •  Stay healthy – Exercise, a balanced diet, quality sleep and medita3on prac3ce have all been

shown to reduce stress. Keep on top of your own physical health and mental health by scheduling (and keeping) appointments with your doctor and health team

More informa3on!

For more informa3on on the needs of caregivers, please check out this video from the Alberta FASD Learning Series!

• Alberta FASD: Understanding the Needs of the Caregiver: Psychological treatment and intervenKon -‐ hTp://www.youtube.com/watch?feature=player_embedded&v=j8edSEnIc0Y

Caregiver support As men3oned earlier, one of the best things you can do is engage in good self care. Remember: you cannot effec+vely support the child if you do not care for yourself. A few key self-‐care sugges3ons are listed below: •  Take 3me to relax or engage in enjoyable ac3vi3es •  Eat a balanced diet and set 3me aside to engage in exercise (even

light walking) •  Engage your personal support network by asking for help when you

need it. •  Talk to suppor3ve friends or family members •  Take advantage of the respite care opportuni3es available •  Seek counseling if you are feeling overwhelmed or distressed

Caregiver support

In addi3on to self-‐care, you may also want to begin assembling a network of support for the coming months. FASD is a life-‐long journey and you may find it helpful to speak with those who have travelled the path before. Ask your child’s caseworker or contact an agency that offers programming to individuals with FASD if they can provide contact informa3on for families or individuals who have cared for a child with FASD before. Many individuals and families have also self-‐published blogs and websites about their experiences with FASD.

Caregiver support Your network of support can also involve friends and family members. As you reach out be prepared to provide some educa3on. Some people may not know what FASD is or what that means for your family. If you have been given (or have found) good informa3on and resources be sure to provide copies to family members and suppor3ve friends. Keep in mind that many people may be unsure of how to help. It is important that you make your needs known. Look for ways to engage the unique talents and experiences of your support network.

Caregiver support

Keep a list or chart of who can provide what support along with their contact informa3on. This informa3on will not only help you, but is also important in the event of an emergency.

Emergency informa3on Planning for an emergency is important for every family but even more important for those caring for a child with FASD. Here are some sugges3ons on emergency planning: •  Emergency care – know what will happen to your child if you have an

emergency. Make sure your child’s caseworker and the emergency contact have copies of all important paperwork

•  Update your contacts – make sure emergency contacts are up to date and labeled in your phone and wallet/purse. Ensure the child also has a copy of the emergency contacts to carry at all 3mes

•  Wills/Estate Planning – ensure you have an up to date will or estate plan •  Con3ngency Plans – think about the “everyday” emergencies (running

late, car breakdown etc.) and come up with solu3ons in advance and talk to those you may need support from

Avoiding isola3on

It is very important to avoid isola3on when providing care to an individual with excep3onal needs. This includes maintaining 3es with friends and family as well as seeking support from other caregivers.

Avoiding isola3on

Why seek out other caregivers? Friends and family can provide wonderful support, but they may not understand the unique challenges and demands you are experiencing. Caregivers with similar experiences can provide unique insights, advice and understanding that may not be available from other sources.

Avoiding isola3on Where can I find fellow caregivers? •  Your child’s agency may offer caregiver support groups •  Family support agencies may have caregiver groups available •  Cultural centers may offer culturally-‐relevant support op3ons •  Speak with leaders at any support groups your child aTends

to see if they can put you in touch with fellow parents •  Research conferences offer the opportunity to connect with

fellow parents •  Online mailing lists, forums and communi3es, par3cularly

those hosted by reputable agencies

Avoiding isola3on

What are other ways to avoid isolaKon? Aside from keeping connected with friends, family and fellow caregivers, you can avoid isola3on by ac3vely taking part in the community with your child. Look for opportuni3es to become involved in community ac3vi3es. Volunteering together, taking a class together or joining a developmentally-‐appropriate playgroup offer opportuni3es to forge new community connec3ons and help your child build social skills.

Avoiding isola3on Sharing your experiences in wri3ng can also reduce feelings of isola3on. Many paren3ng magazines and websites offer space where parents can share their experiences. Not only will this allow you to share your story, you will be providing valuable informa3on to other parents about what FASD is and raising awareness of “invisible disabili3es” in all communi3es. In addi3on to wri3ng for other publica3ons there are many websites that will give you a free blog where you can write about your experiences. Posts on blogs can typically be kept private or be made public, giving you the freedom to decide what to share and when to share it.

Resources for caregivers

Professional Support Professional support begins, first and foremost, with your child’s caseworker or agency. As you begin your search for professional resources, begin with your caseworker and discuss your specific concerns. Your caseworker may have connec3ons with a number of different agencies, programs and other resources that require a referral for access.

Professional resources

Professional resources can also come from your child’s mental health team. Depending on the 3ming and severity of the diagnosis the individual you are caring for may already be involved with a mul3tude of mental health services and prac33oners or may be primarily involved only with a pediatrician. Your child’s pediatrician can provide referrals to a number of medical and mental health professionals.

Professional resources When preparing for appointments with your child’s pediatrician take the 3me to make notes on any concerns or ques3ons you wish to ask and issues you need to address. Add addi3onal informa3on you gather informa3on from the pediatrician and other professionals. These notes will not only help you maximize the value of your child’s appointments but will also provide you with a way to see your child’s progress over 3me.


Professional resources are not only medical or mental health related. Teachers, youth leaders, mentors and respite care workers can all be included in your professional resource network. In a later module you will find a “Matrix of Professionals” involved in the care of FASD. This matrix will provide you with a brief descrip3on of the professionals involved in the care of individuals with FASD and the roles they play.

Professional resources As your matrix of professionals expands you may find it helpful to keep all of your notes in a binder, notebook or folder so they can be easily organized and accessed. Request copies of any documents or test results you feel may be relevant to other professionals within your support network and be sure to share the informa3on between professionals that you feel is important.


Finally, you may find some professional resources through personal research. ATending conferences, searching online, collec3ng brochures and reading ar3cles may all provide addi3onal professional resources.

Professional resources for caregivers

In addi3on to your child’s matrix of professionals, you may have your own network of professionals to address your needs as a caregiver. This network may include professionals to help you look aaer your physical health, mental health, spiritual health and emo3onal health. Depending on your preference, you may want to start a similar journal or nota3on system to track your own personal health, par3cularly if you find yourself becoming overwhelmed or frustrated. Taking notes can help you to iden3fy paTerns that contribute to your feelings of frustra3on, allowing you to interrupt the paTerns and protect your own health.

Personal support

Personal support is tremendously important for every caregiver. Personal supports can take a variety of forms. In many cases you will find that those providing personal support are also those providing professional care to you or your child.

Personal support: Emo3onal needs

EmoKonal Needs: These personal supports focus on your emo3onal needs as a caregiver. Close friends, family members and professional supports like counselors can help to support your emo3onal needs. Emo3onal supports listen, provide understanding and validate your concerns and feelings. Emo3onal supports may also provide much needed laughter and stress relief!

Personal support: Physical needs

Physical Needs: Physical needs include food, water, shelter and security. Those offering support for physical needs may assist by preparing healthy meals, 3dying up the home or providing safe transporta3on. These supports are oaen fulfilled by friends and family members. In the event of a crisis these supports may expand to include food bank staff, housing support agencies or law enforcement personnel. If you find it difficult to meet basic physical needs for you or your child it is impera3ve that you speak with your child’s caseworker.

Personal support: Respite needs

Respite Needs: Respite supports provide a break in caregiving. A designated respite care worker, babysiTer, grandparent, crisis nursery, agency program, family friend or other rela3ve might provide respite care within your network. It is important to u3lize respite care opportuni3es to give yourself 3me to relax, recharge and rest. Providing care to an individual with FASD requires a tremendous amount of energy. Respite care is designed to allow you to replenish your personal reserves and avoid burnout.

Personal supports In loca3ng personal supports, think outside of the box and do not be afraid to let others know what you need! Break large needs into smaller, more manageable pieces. Keep in mind that many people may be unsure of how to help. It is important that you make your needs known in a clear and concise way. Reach out to friends and family members to ask for support and assistance. If you find yourself overwhelmed with offers to help choose a few key friends or family members who can distribute updates to everyone for you.

Personal supports: Family members

Family members can play a key role in personal support networks, par3cularly if they live nearby. Family members of caregivers can also be profoundly impacted by an FASD diagnosis. Family therapy can be useful in strengthening suppor3ve bonds within the family and helping family members work through any difficul3es that arise. Family therapy is also a helpful interven3on for the individual with FASD.

Personal supports: Family therapy

For more informa3on on the use of family therapy in the treatment of FASD, please check out this video from the Alberta FASD Learning Series: •  Alberta FASD – Approaches to treatment: Family therapy -‐ hTp://www.youtube.com/watch?feature=player_embedded&v=tpw8oWe4gJE

Curious to learn more?

•  Check out this video from the Alberta FASD Learning Series: – Living with FASD -‐ As a Person, As a Parent -‐ hTp://www.youtube.com/watch?feature=player_embedded&v=Qnt49T5VZ90

References •  Figley, C.R. (2002). Trea+ng compassion fa+gue. New York, NY: Brunner-‐

Routledge. •  Gentry, J.E., & Baranowsky, A. (1998). Treatment manual for the Accelerated

Recovery Program: Set II. Toronto, Ontario, Canada: Psych Inc. •  Joinson, C. (1992). Coping with compassion fa3gue. Nursing, 22, •  116–120. •  Mash, E. & Wolfe, D. (2008). Abnormal Child Psychology. Independence, KY:

Wadsworth •  Maslach, C. (1982). Burnout—The cost of caring. Englewood Cliffs, NJ: Spectrum. •  McHolm, F. (2006). Rx for compassion fa3gue. Journal of Chris+an Nursing, 23, 12–

19. •  Pfifferling, J.H., & Gilley, K. (2000). Overcoming compassion fa3gue. Family

Prac+ce Management, 7(4), 39–46 •  Visionary Produc3ons Inc. (1994). Compassion Fa+gue: The stress of caring too

much. Panama City, FL: Visionary Produc3ons Inc. •  Compassion Fa3gue Solu3ons: hTp://www.compassionfa3gue.ca

The Caregiver Curriculum on FASD •  Title: Caregiver Curriculum on FASD (Fetal Alcohol Spectrum Disorder) 2014 •  Author: Dorothy Badry & Jamie Hickey in collabora3on with the Tri Province FASD

Research Team •  Format: pdf and Power point -‐ online topics and modules on the website

fasdchildwelfare.ca •  Publisher: Faculty of Social Work, University of Calgary; Faculty of Social Work,

University of Manitoba & Children’s Aid Society of Toronto-‐Child Welfare Ins3tute

•  This project was funded by the Public Health Agency of Canada. •  ISBN 978-‐0-‐88953-‐375-‐2© •  Use of Material: This material can be freely shared and used with acknowledgment

using the cita3on below. •  CitaKon: Badry, D., Hickey, J. & the Tri Province FASD Research Team (2014). Caregiver Curriculum on

FASD. Online: fasdchildwelfare.ca; Faculty of Social Work, University of Calgary; Faculty of Social Work, University of Manitoba & Children’s Aid Society of Toronto-‐Child Welfare Ins3tute. Funder: Public Health Agency of Canada.

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