Wednesday 29 October - Wendy Duggleby

Transitions:How can we help?

Wendy Duggleby, PhD, RN, AOCNNursing Research Chair Aging and Quality of Life

Faculty of Nursing University of Alberta

October 29, 2014

Change, like sunshine, can be a friend or a foe, a blessing or a curse, a dawn or a dusk.

- William Arthur Ward

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.

Transitions

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

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)

Transitions

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

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.

Unexpected

Most Significant Changes

Unexpected

Sudden


Unexpected

Sudden

Concurrent


“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.”

Environment

“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.”

Physical and Mental Health

“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.”

Activities of Daily Living

“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….”

Changes in Roles/Relationships

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.”

The Chaos of Caregiving and Hope

Duggleby et al. (2012). Qualitative Social Work Research and Practice, 11(15), 459-469.

I had a normal life once, but things have changed.

It was unexpected – my life is chaosIn my naivety, I believed I could do thisI underestimated the illness that

accompanied my companion.

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.

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.

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.

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?

.

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?

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!

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.

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.

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.

Do Transitions Have an Impact on Quality of Life?

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.

Existential McGill Quality

of Life


of LifeAge

p=0.01

-


of LifeAge

p=0.01

-p=0.04

+

Hope: Temporality &

Future

Support McGill Quality

of LifeHopeMonths since

Diagnosisp=0.022 p=0.048

- +

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.

Mental Quality of

Life

HOPEInter-

connectiveness

HOPETemporarily &

Future

p=0.041 p=0.003

+ +

Physical Quality of

LifeGuilt

p=0.041 p=0.003

+ +

HOPEInter-

connectiveness

Self-efficacy

p=0.014+

How do Palliative Patients and Their Families Deal with

Transitions?

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


What Has Happened


Reframing Hope

Coming to Terms

Connecting


Information



Redefining Normal

Redefining Normal Defining New

Standards of “Well”



Navigating Unknown Waters


What Has Happened


Reframing Hope


Information



Redefining Normal

Defining New Standards of “Well”



Transitions Environment

Physical & Mental Health

Roles/ Responsibilities

Activities of Daily Life

Timely Communication

Information

Support Networks

How Can We Help?

Development and Evaluation of a Transition Toolkit for Older Rural Palliative Patientsand 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)

Changes Toolkit

www.changestoolkit.ca

Who is completing this evaluation?

44%

40%

10% 7%

OtherFamily member or friendPerson with illnessPrefer not to say

65%

11%8%

3%2%2%

2%

2%

1%

1%

1%

1%

1%

1%

1%

Canada, 236Brazil, 41United States, 29Other, 12Portugal, 9Italy, 7UK, 6Mexico, 6Australia, 4UAE, 3Chile, 2Ecuador, 2Japan, 2NZ, 2Tunisia, 2

Where do they come from?

By country and number of sessions from 09/2013 – 09/2014

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 useb) Feasibility, andc) Acceptability

….for palliative patients and their family caregivers

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.

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)

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 deal with transitions? 3.5 (0.58)

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 to start conversations with families about end of life transitions? 5 (0.00)

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.

“Life is pleasant.Death is peaceful.

It’s the transition that is troublesome.”

- Isaac Asinov (1920-1992)

Health & Medicine

Wednesday 29 October - Wendy Duggleby