Chronic Sorrow

Promoting compassionate practice for healthcare

workers working with parents of children with chronic

oncological conditions.

Katie Lindeberg

Senior Social Worker

Lady Cilento Children’s Hospital

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• Grief makes people uncomfortable

• Professional “armour”

• Permissions for grief – when is grief/sadness “allowed”?

• Impact of chronic exposure to grief/sadness/loss on the MDT

• How does the team sit with discomfort?

• Impact on what we do and how we interact as a team

• What is this like for families?

“The things we don’t talk about”

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• Why do we do what we do?

• We don’t have to do this forever

• It’s hard work doing the “grief work”

• High functioning families are programmed to function

• How do we impart the value of a child and family on the

broader MDT throughout treatment and help understand their

experience?

Our role in promoting compassionate practice.

“The things we don’t talk about”

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• Achieve an understanding of chronic sorrow

• Share and explore challenges in the health setting/MDT

• Explore a case study and connect with it’s challenges

• Step by step model of practice

• Educating the multidisciplinary team

Be brave

Share your experiences

Learn from each other

Goals of Workshop

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Chronic Sorrow

Introduced by Simon Olshansky (1962)

• Study revealed a pervasive, psychological reaction

observed among parents of intellectually impaired

children.

• The experience takes a unique course for every family

• Responses of parents which had been viewed as

pathological were, in fact, normal (not neurotic) in their

challenging situation.(Olshansky 1962)

Royal Children’s Hospital &

Health Service District

• Recurring, cyclical process of grief.

• Disparity between the ideal and the current, living reality.

• Predictable and unpredictable crises require difficult

adaptations.

• Grief often deepens as time progresses.

• Trigger events bring new feelings of sadness to forefront.

• Can include loss of other and also loss of self/identity

• Fluctuation of symptoms may create false hope and

subsequent despair (Roos, 2002)

Key Features of Chronic Sorrow

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Grief is a normal, emotional response to loss, the expression of

which can include sadness, sorrow, fatigue, depression, relief,

shock, anger, guilt, and anxiety (Barbato & Irwin, 1992)

Defining Grief

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Chronic Sorrow

“While episodes of sadness abate and individuals do go on

with their lives, as long as the disparity created by the loss

exists, chronic sorrow is likely to be periodically

experienced… by individuals and caregivers whose

anticipated life course has been disrupted”.

(Eakes, G., Burke, M. Hainsworth,1998)

Royal Children’s Hospital &

Health Service District

Traditional Grief vs Chronic Sorrow

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• Person is present

• Losses are multiple

• Unpredictable circumstances of the loss

• Often worsens as time passes

• Positive memories can be a source of

pain as this highlights the loss

• Relationship is ongoing

• Support may be available at the

beginning but decreases through time

• Loss is ongoing, not generally

acknowledged by society or culture

• Based on absence of the person

• Grief progresses in the direction of

some resolution or ‘lightening’

• Positive memories can be source

of comfort

• Relationship with deceased can be

brought to closure

• More likely understandable

reasons for loss

• Support usually available for the

bereaved at time of grief

• Customs exist to acknowledge the

loss, e.g. funeral, memorial

• Grief is a normal reaction to parenting a child with a chronic illness.

• The object of the grief is alive – a “living grief”.

• Challenges the idea that “non-acceptance” is “unhealthy”.

• Characterised by feelings of sadness over time in a situation that has no predictable end.

• Stress and sadness can be confused with mental health

conditions e.g. anxiety and depression.

Understanding Chronic Sorrow

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Chronic sorrow is not depression.

Understanding Chronic Sorrow

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Depression

• A pathological reaction that may occur without a specific loss.

• A mood disturbance that can interfere with daily functioning

• Feelings of worthlessness, low self esteem, suicidal ideation

• Can be temporary and improve over time.

• Can be treated medically.

Chronic sorrow

• A natural reaction to an ongoing, living loss.

• Symptoms generally don’t interfere with daily functioning.

• Is a pervasive and profound sadness.

• Re-emerges with triggers.

• Can be permanent, periodical, and progressive.

http://www.chronicsorrow.org/

Understanding Chronic Sorrow

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A long goodbye

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Winnie the Pooh – A.A. Milne

Emma, aged 3.

•Youngest child of 3, intact family. Two older siblings

•Diagnosed with NF1 at 9 weeks of age

•New tumours detected at age 1, and again at 2

•Large brainstem tumour encompassing the spine and cerebellum.

•Commenced regular chemotherapy and MRI’s

•Clever, sensitive and articulate little girl

•Weight loss and traumatic NG insertion

•Multiple losses associated with diagnosis

Case Study

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Powerful Quotes

Consider and Discuss in your groups

• What is going on for the person behind this quote?

• Who do you think said this?

• How might you/another clinician respond?

Activity

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• “Her little body is programmed to produce tumours that will one day kill her”

• “There is a sense of dread before every MRI because of what the results may

mean for us. I’m just waiting for the scan that tells us whether or not we continue

with treatment and whether or not it is giving us any more time”

• “Why am I putting her through this? Am I being selfish?”

• “Like now, as I watch her play, I know that one day I am going to lose her.... Then

she will turn around at smile at me and my heart will be so full. I don’t know if that

makes it worse”.

• “I’ll wake up and it will feel like any normal day, and then I’ll be doing something

very normal and out of nowhere, it hits me, and I feel so sad. Sad for my little girl,

sad for my boys, sad for myself. And then I will get on with my day, because you

just have to”.

• “I’d really like to get occupational therapy and music therapy involved to support

her with the next NG insertion attempt”.

Powerful quotes

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• “She’ll be ‘right”

• “I didn’t tell her anything she didn’t already know”

• “I don’t know what she’s so worked up about”

• “She’s an anxious mum”

• “Is she depressed? She should see someone”

• “You’re being too negative”

• “Why are we talking about this patient? There’s nothing new”

Powerful Quotes

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• Have you heard this before?

• Who said it to you?

• How are we already advocating within the MDT and

promoting compassionate practice?

“I could never do your job”

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Name and Validate the Loss

Validate Feelings

Identify Resources

Find Meaning

Address Trauma and Triggers

Tempering Mastery

Reconstruct Identity

Promoting Attachment

Discover New Hope (“New Normal”)

When in doubt, be kind

(Adapted from Boss, et all 2012)

Employing a Supportive Framework

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Name and Validate the Loss

“Without a name or category to frame these emotions, parents may

be unaware that they are grieving” (Amy Patrick-Ott & Linda D. Ladd, 2010)

•Normalise the ongoing grief that is present

•Empathise with the family (Empathy vs Sympathy)

•Educate family (and team) about the process they are experiencing

•Sit with them in their grief

•Assist them to understand the nature of these losses and receive

validation.

Often results in immediate relief and improved self concept (Roos, 2002)

Employing a Supportive framework

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Validate feelings

Helpful phrases include:

“It looks like you have been crying; would you like to talk?”

“It’s okay to feel sad” “That sounds really hard”

“It’s never going to feel okay to have a child with…”

Avoid making comments that potentiate the situation, such as:

Any comment that begins with “at least..”

“Things could be worse”

“I totally understand..”

These can minimize, instead of

acknowledge, a caregiver’s feelings”

(Gordon, 2009)

Empathetic Communication

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Identify Resources

• Providing relevant educational materials

• Community resources for education, support and respite

• Identifying internal strengths and capacity to cope

• Encourage them to access supports, family and caring friends

Employing a Supportive Framework

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Helping the family to find meaning

• Exploring existentialism, faith, spirituality

• Encourage sitting with grief while celebrating milestones and day to

day joy of their children

• Find meaning in what they have endured – resilience

• Find meaning in how they can impact others or “give back”

• Practice gratitude

• Hope

Employing a Supportive Framework

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When in doubt, be kind.

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Some clever reframing..

Employing a Supportive Framework

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What does this look like?

Consider and discuss in your groups

• What adjectives have you heard to describe families?

• How can you/do you reframe this?

• How is this received?

Activity

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Address Trauma and Triggers

• Trauma informed practice principles.

• Acknowledge multiple traumas in the health setting.

• Parents less likely to be able to think clearly, reflect, remember,

perspective take and/or be able to be empathic.

• Affects information retention/understanding.

• What does this look like?

Parents risk being misinterpreted by treating teams, rather than

being understood in terms of trying to cope while being in a

traumatised state.

Employing a Supportive Framework

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Address Trauma and Triggers

“The beginning of chronic sorrow is often instigated by and coexists with trauma”

(Roos, 2002)

Common Trauma Triggers

Diagnosis “flashbacks”

First admission (any admission)

Procedures and scans

Health crisis, adherence battles

Milestones (birthdays, anniversaries)

Family Stress (e.g. marital/finances)

Comparisons to social norms and other patient journeys

Death or palliation of another patient

Unending caregiving

End of treatment

Employing a Supportive Framework

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Tempering Mastery

What can the parent do to modify the desire for control and certainty?

• Accept what is beyond one’s control

• Sitting with uncertainty

• Take ownership of what they can do, and do it well

What can help?

• Offering choice and collaboration

• Giving parents your time

• Identify strengths and resilience

• Address guilt, decrease self blame, externalise blame

• Understanding that that the world is not always fair

• Therapeutic support

• Promoting self care

Employing a Supportive Framework

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Help Parents to Reconstruct Their Identity

Putting the emotional pieces back together

Explore:

• What family/cultural norms might be restricting the process of

adjustment/adaptation?

• Who am I/Who are we now?

• What new roles have been gained?

• What roles/ideals have been lost?

• The importance of self care and nurture

• Becoming more than a caregiver?

Employing a Supportive Framework

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Promote Ongoing Attachment

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•Grieving what is lost and celebrating what one still has.

•Celebrate all of their child’s accomplishments and all they will

continue to accomplish.

•Understanding the “emotional roller-coaster”

•Creating new relationships which support changing needs.

•Support parents to bond/parent while letting go of what may no

longer be possible.

Employing a Supportive Framework

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Discovering New Hope - “New Normal”

What can help?

•Learning skill of “sitting with” with ambiguity, uncertainty, sadness

•Finding and nurturing hope

•Reflection, letting go of trivial issues, redefining justice

•Finding something they can control/master to balance the

uncertainty

•Meaning making and reframing

•Empowerment through learning effective coping strategies.

•Support network

Employing a Supportive Framework

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When in doubt, be kind

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Katie Lindeberg

Senior Social Worker

Lady Cilento Children’s Hospital

Thank You..

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• Boss et. al., “Grief in the Midst of Ambiguity and Uncertainty: An Exploration of Ambiguous

Loss and Chronic Sorrow” in Niemeyer et. al., Grief and Bereavement in Contemporary

Society: Bridging Research and Practice, Routledge Press, 2012

• Eakes, G.G., Burke, M.L., & Hainsworth, M.A. (1998). Middle range theory of chronic sorrow.

Journal of Nursing Scholarship, 30( 2),179- 183.

• Gordon, J (2009) An Evidence-Based Approach For Supporting Parents Experiencing

Chronic Sorrow, PEDIATRIC NURSING/March-April 2009/Vol. 35/No. 2

• Olshansky, S. ( 1962). Chronic sorrow: A response to having a mentally defective child.

Social Casework, 43, 190-193.

• Patrick-Ott. A & D. Ladd, L (2010) The Blending of Boss's Concept of Ambiguous Loss and

Olshansky's Concept of Chronic Sorrow: A Case Study of a Family With a Child Who Has

Significant Disabilities, Journal of Creativity in Mental Health, 5:1, 73-86,

• Roos, S. ( 2002) Chronic sorrow: A living loss. New York: Brunner-Routledge.

• http://www.chronicsorrow.org/

• Milne, A.A (1977) The Many Adventures of Winnie The Pooh

References

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