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
2
• 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”
3
• 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”
4
• 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
5
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
7
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
8
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
10
• 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
11
Chronic sorrow is not depression.
Understanding Chronic Sorrow
12
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
13
A long goodbye
14
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
15
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
16
• “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
17
• “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
18
• 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”
19
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
20
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
21
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
22
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
23
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
24
When in doubt, be kind.
25
Some clever reframing..
Employing a Supportive Framework
26
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
27
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
28
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
29
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
30
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
31
Promote Ongoing Attachment
•
•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
32
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
33
When in doubt, be kind
34
Katie Lindeberg
Senior Social Worker
Lady Cilento Children’s Hospital
Thank You..
35
• 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
36