Alder Hey - NW Children’s Palliative Care Network · 2016. 6. 24. · Child with Cancer Journal...
Transcript of Alder Hey - NW Children’s Palliative Care Network · 2016. 6. 24. · Child with Cancer Journal...
![Page 1: Alder Hey - NW Children’s Palliative Care Network · 2016. 6. 24. · Child with Cancer Journal of Advanced Nursing 66(9), 1980-1990 d.o.i 101111/j.2648.2010.05381.x Doka, F. (2013)](https://reader033.fdocuments.in/reader033/viewer/2022060822/609b15ae7c160c392935f289/html5/thumbnails/1.jpg)
A Palliative Care Journey
20th May 2016
Alder Hey
Anticipatory Grief
Shirley Potts
North Development Lead
![Page 2: Alder Hey - NW Children’s Palliative Care Network · 2016. 6. 24. · Child with Cancer Journal of Advanced Nursing 66(9), 1980-1990 d.o.i 101111/j.2648.2010.05381.x Doka, F. (2013)](https://reader033.fdocuments.in/reader033/viewer/2022060822/609b15ae7c160c392935f289/html5/thumbnails/2.jpg)
Perinatal Mortality
Surveillance Report at the
Royal College of
Obstetricians
and Gynaecologists
(infographic available on
website)
![Page 3: Alder Hey - NW Children’s Palliative Care Network · 2016. 6. 24. · Child with Cancer Journal of Advanced Nursing 66(9), 1980-1990 d.o.i 101111/j.2648.2010.05381.x Doka, F. (2013)](https://reader033.fdocuments.in/reader033/viewer/2022060822/609b15ae7c160c392935f289/html5/thumbnails/3.jpg)
![Page 4: Alder Hey - NW Children’s Palliative Care Network · 2016. 6. 24. · Child with Cancer Journal of Advanced Nursing 66(9), 1980-1990 d.o.i 101111/j.2648.2010.05381.x Doka, F. (2013)](https://reader033.fdocuments.in/reader033/viewer/2022060822/609b15ae7c160c392935f289/html5/thumbnails/4.jpg)
overview
What is anticipatory grief?
Theories pre and post-bereavement
Talking about death to children
Attending to meanings
![Page 5: Alder Hey - NW Children’s Palliative Care Network · 2016. 6. 24. · Child with Cancer Journal of Advanced Nursing 66(9), 1980-1990 d.o.i 101111/j.2648.2010.05381.x Doka, F. (2013)](https://reader033.fdocuments.in/reader033/viewer/2022060822/609b15ae7c160c392935f289/html5/thumbnails/5.jpg)
“Are we nearly there yet?”
“Where does the end begin?”
![Page 6: Alder Hey - NW Children’s Palliative Care Network · 2016. 6. 24. · Child with Cancer Journal of Advanced Nursing 66(9), 1980-1990 d.o.i 101111/j.2648.2010.05381.x Doka, F. (2013)](https://reader033.fdocuments.in/reader033/viewer/2022060822/609b15ae7c160c392935f289/html5/thumbnails/6.jpg)
Anticipatory Grief:
The impact starts from diagnosis
Bereavement
“The overall experience of family
members and friends in anticipating the
death of a loved one, and in living
through and adjusting to life beyond that
death.” Parkes, 2001
![Page 7: Alder Hey - NW Children’s Palliative Care Network · 2016. 6. 24. · Child with Cancer Journal of Advanced Nursing 66(9), 1980-1990 d.o.i 101111/j.2648.2010.05381.x Doka, F. (2013)](https://reader033.fdocuments.in/reader033/viewer/2022060822/609b15ae7c160c392935f289/html5/thumbnails/7.jpg)
Research: Parents of children with cancer
Fewer than half reported being at peace with themselves and their situation in life.
Parents of newly diagnosed children reported more severe anticipatory grief responses than those 6 – 12 months after diagnosis.
No statistical difference between mothers and fathers.
Al-Gamal, F.& Long, T.(2010)
![Page 8: Alder Hey - NW Children’s Palliative Care Network · 2016. 6. 24. · Child with Cancer Journal of Advanced Nursing 66(9), 1980-1990 d.o.i 101111/j.2648.2010.05381.x Doka, F. (2013)](https://reader033.fdocuments.in/reader033/viewer/2022060822/609b15ae7c160c392935f289/html5/thumbnails/8.jpg)
Anticipatory Grief
Rando acknowledges that the term anticipatory grief is a misnomer. She prefers anticipatory mourning. This is a critical distinction.
Fulton’s concern was that the term was easily misused.
“..assumption that the acknowledgement and processing of the grief prior to the loss would mitigate grief experienced after the death.”
(in Doka: 2013)
![Page 9: Alder Hey - NW Children’s Palliative Care Network · 2016. 6. 24. · Child with Cancer Journal of Advanced Nursing 66(9), 1980-1990 d.o.i 101111/j.2648.2010.05381.x Doka, F. (2013)](https://reader033.fdocuments.in/reader033/viewer/2022060822/609b15ae7c160c392935f289/html5/thumbnails/9.jpg)
the dying child
the terminally ill child is reported to grieve loss
of function and future, and to worry about being
forgotten, experiencing pain, and leaving family
members behind in sorrow.
Hinds et al (2005)
![Page 10: Alder Hey - NW Children’s Palliative Care Network · 2016. 6. 24. · Child with Cancer Journal of Advanced Nursing 66(9), 1980-1990 d.o.i 101111/j.2648.2010.05381.x Doka, F. (2013)](https://reader033.fdocuments.in/reader033/viewer/2022060822/609b15ae7c160c392935f289/html5/thumbnails/10.jpg)
Everyday Life
Experience Loss-oriented
Grief work
Intrusion of grief
Denial/avoidance of
restoration changes
Restoration-oriented
Attending to life
changes
Distraction from grief
Denial/avoidance of
grief
The Dual Process Model of Coping with Bereavement
Rationale and Description, Stroebe, M. & Schut, H. (1999)
Death Studies 23, 197-224
![Page 11: Alder Hey - NW Children’s Palliative Care Network · 2016. 6. 24. · Child with Cancer Journal of Advanced Nursing 66(9), 1980-1990 d.o.i 101111/j.2648.2010.05381.x Doka, F. (2013)](https://reader033.fdocuments.in/reader033/viewer/2022060822/609b15ae7c160c392935f289/html5/thumbnails/11.jpg)
Life
Change
Loss
Grief
Growth
Change
Potts, S.(2005)
Everylife
Salisbury, APS
publishing
![Page 12: Alder Hey - NW Children’s Palliative Care Network · 2016. 6. 24. · Child with Cancer Journal of Advanced Nursing 66(9), 1980-1990 d.o.i 101111/j.2648.2010.05381.x Doka, F. (2013)](https://reader033.fdocuments.in/reader033/viewer/2022060822/609b15ae7c160c392935f289/html5/thumbnails/12.jpg)
When a sibling is dying
Appropriate time to explain to children and young people.....
Openness and honesty fosters trust and security, and allays isolation, anxieties and fear. Secrecy promotes the opposite...
... and the child has no opportunity to share or express feelings of fear, anger, sadness.... or curiosity
Children are often more aware of someone’s health status than adults realise
![Page 13: Alder Hey - NW Children’s Palliative Care Network · 2016. 6. 24. · Child with Cancer Journal of Advanced Nursing 66(9), 1980-1990 d.o.i 101111/j.2648.2010.05381.x Doka, F. (2013)](https://reader033.fdocuments.in/reader033/viewer/2022060822/609b15ae7c160c392935f289/html5/thumbnails/13.jpg)
![Page 14: Alder Hey - NW Children’s Palliative Care Network · 2016. 6. 24. · Child with Cancer Journal of Advanced Nursing 66(9), 1980-1990 d.o.i 101111/j.2648.2010.05381.x Doka, F. (2013)](https://reader033.fdocuments.in/reader033/viewer/2022060822/609b15ae7c160c392935f289/html5/thumbnails/14.jpg)
![Page 15: Alder Hey - NW Children’s Palliative Care Network · 2016. 6. 24. · Child with Cancer Journal of Advanced Nursing 66(9), 1980-1990 d.o.i 101111/j.2648.2010.05381.x Doka, F. (2013)](https://reader033.fdocuments.in/reader033/viewer/2022060822/609b15ae7c160c392935f289/html5/thumbnails/15.jpg)
Information Sheets
When a sibling is not expected to live:
Supporting children
Building resilience in bereaved children
Children's understanding of death at different
ages
Explaining to young children that someone has
died
Explaining funerals to children
![Page 16: Alder Hey - NW Children’s Palliative Care Network · 2016. 6. 24. · Child with Cancer Journal of Advanced Nursing 66(9), 1980-1990 d.o.i 101111/j.2648.2010.05381.x Doka, F. (2013)](https://reader033.fdocuments.in/reader033/viewer/2022060822/609b15ae7c160c392935f289/html5/thumbnails/16.jpg)
![Page 17: Alder Hey - NW Children’s Palliative Care Network · 2016. 6. 24. · Child with Cancer Journal of Advanced Nursing 66(9), 1980-1990 d.o.i 101111/j.2648.2010.05381.x Doka, F. (2013)](https://reader033.fdocuments.in/reader033/viewer/2022060822/609b15ae7c160c392935f289/html5/thumbnails/17.jpg)
attend
to be present at
to go with as a concomitant or result; accompany
to take care of; minister to.
to look after; guard
to listen to; give heed to
to wait for; expect
to apply oneself
to pay attention; listen or watch alertly
to be present
![Page 18: Alder Hey - NW Children’s Palliative Care Network · 2016. 6. 24. · Child with Cancer Journal of Advanced Nursing 66(9), 1980-1990 d.o.i 101111/j.2648.2010.05381.x Doka, F. (2013)](https://reader033.fdocuments.in/reader033/viewer/2022060822/609b15ae7c160c392935f289/html5/thumbnails/18.jpg)
helping to ‘normalise’ grief responses
Physical
Grief can be painful
Palpitations, shortness of breath
Flu-like feelings
Lowered immunity
Appetite and sleep changes
Stress headaches/chest pains
Exhaustion
![Page 19: Alder Hey - NW Children’s Palliative Care Network · 2016. 6. 24. · Child with Cancer Journal of Advanced Nursing 66(9), 1980-1990 d.o.i 101111/j.2648.2010.05381.x Doka, F. (2013)](https://reader033.fdocuments.in/reader033/viewer/2022060822/609b15ae7c160c392935f289/html5/thumbnails/19.jpg)
Emotional
Distress
Relief
Anger
Longing
Crying
Laughing
Isolated
Misunderstood
![Page 20: Alder Hey - NW Children’s Palliative Care Network · 2016. 6. 24. · Child with Cancer Journal of Advanced Nursing 66(9), 1980-1990 d.o.i 101111/j.2648.2010.05381.x Doka, F. (2013)](https://reader033.fdocuments.in/reader033/viewer/2022060822/609b15ae7c160c392935f289/html5/thumbnails/20.jpg)
Cognitive
Lack of concentration
Forgetfulness
Fear of forgetting
Unmotivated
Resentful
Seeking/needing information
![Page 21: Alder Hey - NW Children’s Palliative Care Network · 2016. 6. 24. · Child with Cancer Journal of Advanced Nursing 66(9), 1980-1990 d.o.i 101111/j.2648.2010.05381.x Doka, F. (2013)](https://reader033.fdocuments.in/reader033/viewer/2022060822/609b15ae7c160c392935f289/html5/thumbnails/21.jpg)
Spiritual
Challenge to faith (child-like faith?)
Renewed faith
Anger
Peace
‘Continuing Bonds’
Hope...... changes
![Page 22: Alder Hey - NW Children’s Palliative Care Network · 2016. 6. 24. · Child with Cancer Journal of Advanced Nursing 66(9), 1980-1990 d.o.i 101111/j.2648.2010.05381.x Doka, F. (2013)](https://reader033.fdocuments.in/reader033/viewer/2022060822/609b15ae7c160c392935f289/html5/thumbnails/22.jpg)
.....a bereaved Mum speaks
![Page 23: Alder Hey - NW Children’s Palliative Care Network · 2016. 6. 24. · Child with Cancer Journal of Advanced Nursing 66(9), 1980-1990 d.o.i 101111/j.2648.2010.05381.x Doka, F. (2013)](https://reader033.fdocuments.in/reader033/viewer/2022060822/609b15ae7c160c392935f289/html5/thumbnails/23.jpg)
References
Al-Gamal, F. And Long, T.(2010) Anticipatory Grief in Parents Living with a
Child with Cancer Journal of Advanced Nursing 66(9), 1980-1990
d.o.i 101111/j.2648.2010.05381.x
Doka, F. (2013) Handbook of Thanatology: Print ISBN: 9780415630559
eBook ISBN: 9780203767306
Dyregrov, A. (2008) Grief in Children London: Jessica Kingsley
Hinds, Schum, Baker & Wolfe (2005) Key factors affecting dying children
and their families Journal of Palliative Medicine Vol 8: Supplement 1
Kubler-Ross, E. & Kessler, D. (2014) On grief and grieving NewYork:
Scribner
Potts, S. (2005) Everylife APS. Swindon
https://www.npeu.ox.ac.uk/mbrrace-uk/reports
www.childbereavementuk.org