Transitions: How can we help? Wendy Duggleby Persons receiving palliative care services and their families experience multiple, complex and concurrent significant changes which impact their hope and quality of life. This presentation will focus on the findings from several research studies on transitions and quality of life. An online “Changes Toolkit” developed for persons receiving palliative care and their families will also be presented.

1. Transitions:
How can we help?
Wendy Duggleby, PhD, RN, AOCN
Nursing Research Chair Aging and Quality of Life
Faculty of Nursing University of Alberta
October 29, 2014

3. Change, like sunshine, can be
a friend or a foe, a blessing or
a curse, a dawn or a dusk.
- William Arthur Ward

4. Calvin: [I pray for] the strength to
change what I can, the inability to
accept what I can't, and the incapacity
to tell the difference.

5. Transitions
Ongoing processes characterized by
change for an individual during which
a new situation or circumstance is
incorporated into their lives
(Meilis, 2010)

6. Transitions
The research on transitions in palliative
care generally focuses on two types:
1) The transition into receiving palliative care (Larkin,
2007; Ronaldson, 2011, Hui et al., 2014)
2) Health systems transitions (Berge, 2005; Lawson,
2006, Hui et al., 2014)

7. What Significant Transitions
are Experienced by Persons
with Terminal Illnesses and
Their Families?

8. What are the most significant
changes you have experienced
since receiving palliative care?
Duggleby et al. (2010). The transition experience of rural
older persons with advanced cancer and their families: A
grounded theory study. BMC Palliative Care, 9(5), 1-9.

9. Most Significant Changes
Unexpected

10. Most Significant Changes
Unexpected
Sudden

11. Most Significant Changes
Unexpected
Sudden
Concurrent

12. Environment
“She (my wife) was an outdoor person so
naturally it was a big change, but she did
accept it and of course her condition was
making her realize that she….couldn’t be
outdoors.”

13. Physical and Mental Health
“Oh yeah, that changes, that’s definite
because you don’t do very much. You
aren’t strong enough. Nope. You aren’t
very strong.”

14. Activities of Daily Living
“I can’t hardly peel a cucumber. I can
hardly wash the dishes once in a while.
My husband does it most of the time.”
“Um...the things I miss most are working
in the yard, I love working in the yard.”

15. Changes in Roles/Relationships
“You are always used to helping out and
now they’ve got to help you.”
“Our family got a little bit closer, they
cared for me more….”

16. Changes in Hope
“I had things I wanted to do, things that
we haven’t done yet, that I am not going
to get around to doing…. we had our
retirement hopes… it changes, that’s for
sure.”

17. The Chaos of Caregiving
and Hope
Duggleby et al. (2012). Qualitative Social Work Research and
Practice, 11(15), 459-469.

18. I had a normal life once, but things have
changed.
It was unexpected – my life is chaos
In my naivety, I believed I could do this
I underestimated the illness that
accompanied my companion.

19. The illness my companion bears is often silent in its
demands.
Sometimes I imagine it to be harmless.
Its true nature is just beneath the surface,
Ready to drain the life from us both.

20. I have no map, no directions, no
guide, and the road signs are
few and far between.
This is an incredible challenge I
am unprepared for.
We discuss better days gone by to boost our spirits.
Family and friends sometimes join us - I have hope for better
days.

21. Often my mood is connected to the
weather.
When the sun is shining the days
seem brighter
I stop along the road to enjoy life’s
beauty and to smile - I find
hope.
I am temporarily distracted from
the uncertainty of our journey.

22. Cloudy, stormy days bring with them dark, depressing moods.
Fear creeps into my heart- I feel angry, helpless and tired
Before, when something was broke I fixed it, but I can’t fix my
companion.
.
I feel disconnected from my life – can I get it back?

23. My companion’s life force is draining bit by
bit.
Sometimes my companion is too weak to
continue - I consider life alone.
This thought brings with it a tidal wave of
relief and guilt that combine to
overwhelm me.
I don’t know if I can leave my companion
behind – what
if I can’t find my way
home?

24. The days extend in an endless stretch
There is no end in sight! How long can I go on?
We’re running low on supplies
A crisis is coming – Help I don’t know how to do this!

25. Others offer to care for
my companion.
I feel guilty for even
wanting to have a
rest.
My internal battle of
guilt continues - I
secretly yearn to
be me again.
In the end my hope
that I can make a
difference returns
and I find
strength.

26. We have good days and
bad days.
The days pass by in a
blur morphing into one
long, never-ending day.
But the good days are
tainted by the fear of
bad days looming close
behind.
This fear keeps me
looking over my
shoulder at the road
traveled.

27. I write my challenges, fears and
hopes in my journal.
Putting thoughts and feelings to
paper gives them life and hope
shines through.
Sharing my journals with others
gives me the feeling that
someone is walking with me.
Reading my own words reassures
me that I have done all I can
and I have no regrets.

28. Do Transitions Have an
Impact on Quality of Life?

29. Hope and Quality of Life of Persons
with Advanced Cancer Receiving
Palliative Care
Duggleby et al. (2007). Living with hope: Initial evaluation of a
psychosocial hope intervention for older palliative home care patients.
Journal of Pain and Symptom Management, 33(3), 247-257.

30. Existential
McGill Quality
of Life

31. Existential
McGill Quality
of Life
Age
p=0.01
-

32. Existential
McGill Quality
of Life
Age
p=0.01
-
p=0.04
+
Hope:
Temporality &
Future

34. Support
Months since p=0.022 p=0.048
Hope
Diagnosis
McGill Quality
- +
of Life

36. Living with Hope: Developing a
Psychosocial Supportive Program for
Rural Women Caregivers
of Persons with
Advanced Cancer
Duggleby et al. (2014). Hope of rural women
caregivers of persons with advanced cancer. Rural
and Remote Health, 14, 2561.

37. Mental
Quality of
Life
HOPE
Inter-connectiveness
HOPE
Temporarily &
Future
p=0.041 p=0.003
+ +

38. Physical
Quality of
Life
Guilt
p=0.041 p=0.003
+ +
HOPE
Inter-connectiveness
Self-efficacy
+ p=0.014

39. How do Palliative Patients
and Their Families Deal with
Transitions?

40. Navigating Unknown Waters
Coming to Terms
 Acknowledging
What Has
Happened
 Reminiscing/
Comparing
Where They Are
Now
 Reframing Hope
Connecting
 Actively Seeking
Information
 Searching for
Options
 Connecting with
Trusted Experts
Redefining
Normal
 Defining New
Standards of
“Well”
 Defining When to
Worry
 Maintaining
Personhood
Transitions
 Environment
 Physical &
Mental Health
 Roles/
Responsibilities
 Activities of
Daily Life
Timely Communication
Information
Support Networks

41. Coming to Terms
Coming to Terms
 Acknowledging
What Has Happened
 Reminiscing/
Comparing Where
They Are Now
 Reframing Hope

42. Connecting
Connecting
 Actively Seeking
Information
 Searching for
Options
 Connecting with
Trusted Experts

43. Redefining Normal
Redefining Normal
 Defining New
Standards of “Well”
 Defining When to
Worry
 Maintaining
Personhood

44. Navigating Unknown Waters
Coming to Terms
 Acknowledging
What Has
Happened
 Reminiscing/
Comparing
Where They Are
Now
 Reframing Hope
Connecting
 Actively Seeking
Information
 Searching for
Options
 Connecting with
Trusted Experts
Redefining
Normal
 Defining New
Standards of
“Well”
 Defining When to
Worry
 Maintaining
Personhood
Transitions
 Environment
 Physical &
Mental Health
 Roles/
Responsibilities
 Activities of
Daily Life
Timely Communication
Information
Support Networks

45. How Can We Help?

46. Development and Evaluation of
a Transition Toolkit for Older
Rural Palliative Patients
and their Families
Interdisciplinary Capacity Enhancement (ICE)
Funding through CIHR Inst. of Cancer Research and CIHR Inst. of Health Services
and Policy Research. HOA-80057 (Williams & Wilson PIs)

47. Changes Toolkit

49. www.changestoolkit.ca

51. Who is completing this evaluation?
44%
40%
9%
7%
Other
Family member or friend
Person with illness
Prefer not to say

52. Where do they come from?
65%
11%
3% 8%
2%
2%
2%
1%
2%
1%
1%
1%
0%
0%
1%
Canada, 236
Brazil, 41
United States, 29
Other, 12
Portugal, 9
Italy, 7
UK, 6
Mexico, 6
Australia, 4
UAE, 3
Chile, 2
Ecuador, 2
By country and number of sessions from 09/2013 – 09/2014

53. Evaluation: Purpose
Using a concurrent mixed method design, (Quant+qual)
the purpose of the study was to evaluate the “changes”
intervention for:
a) Ease of use
b) Feasibility, and
c) Acceptability
….for palliative patients and their family caregivers

54. Findings: Pilot Study #1
Question
Mean (STD)
n=7
Ease of Use Were the directions clear? 4.4 (0.5)
Were you sure of what you were expected to do? 4.4 (1.0)
Feasibility Did you have the energy to complete what you wanted to? 3.2 (1.1)
Were you able to complete the activities you wanted to? 3.0 (1.8)
Did you have time to carry out the activities you wanted to? 4.0 (1.4)
Acceptability
Do you feel working with the Changes binder increased your
ability to deal with transitions?
3.7 (1.2)
Would you do it again? 4.3 (1.1)
Would you recommend to someone else? 4.4 (0.8)
Duggleby et al. (2012). Development of a “Changes Toolkit” for Rural Older Palliative Patients
and Their Family Caregivers. Journal of Rural and Community Development, 7(4), 62-75.

55. Findings: Pilot Study #2
Evaluation Characteristics
Mean (STD)
(n=7)
The directions were clear for each activity I wanted to do. 3.83 (1.169)
I had enough energy to complete each activity I wanted to do. 2.50 (1.732)
I had enough time to complete each activity I wanted to do. 2.75 (1.708)
The Changes binder increased my ability to deal with transitions. 3.33 (1.033)
I would recommend the Changes binder to someone else. 4.17 (0.753)
The Changes binder is portable if I need to take it from place to place. 3.33 (1.633)

56. Evaluation: Health Care Professionals
Evaluation Characteristics Mean (STD)
Were the directions about who should receive the tool clear for you? 4.0 (0.98)
Were you sure of what you would be expected to do with the tool? 3.2 (0.75)
Did you feel that the participants were able to use the tool without difficulty? 3.4 (1.3)
Would you recommend the tool to others? 4.4 (0.89)
Do you feel that working with the Changes binder helped patients and families
3.5 (0.58)
deal with transitions?
Do you feel that the binder improved you communication with patients and
families?
4.7 (0.58)
Do you feel that the binder helped you discuss advanced care planning? 4.2 (0.50)
Do you feel that the binder provided a starting point for nurses or social workers
5 (0.00)
to start conversations with families about end of life transitions?

57. A caregiver wrote when asked what worked well with the
Changes Toolkit was:
“....understanding the care I needed, where I can find
HELP, and where I must go to get it. Knowing I’m not
alone in this illness and knowing how to live with hope.
This binder helps me to understand things that I didn’t
know about and some things I did not understand and
wonder about......THANK YOU...”
Duggleby et al. (2012). Development of a “Changes Toolkit” for Rural Older Palliative Patients and
Their Family Caregivers. Journal of Rural and Community Development, 7(4), 62-75.

58. “Life is pleasant.
Death is peaceful.
It’s the transition that is
troublesome.”
- Isaac Asinov (1920-1992)