Moderated by:

Gwyn M. Vernon, MSN, RN, CRNPNational Director, Edmond J. Safra Visiting Nurse Faculty Program at

Parkinson’s Foundation

Guest Speakers:

Julie H. Carter, MN, RN, ANPProfessor of Neurology, Oregon Health & Science University

Joyce Bredesen, DNP, PHN, RN Associate Professor, Metropolitan State University, MN

Nursing Solutions: Improving Caregiver Strain The Science and a Model Intervention

RecordedonMarch27,20181PMET

Introduction

• Parkinson’s disease (PD) is chronic and progressive; often spans many years, even decades

• Gradual loss of autonomy of patient impacts the caregiver/family as well as the patient

• Caregivers may experience a negative impact on their quality of life over time

• By recognizing the multitude of caregiver positive and negative factors, nurses and other health care providers can better assess for caregiver strain and help caregivers to develop coping strategies

Objectives

• Discuss a clinically useful research framework to help family caregivers of people with PD.

• Recognize factors or variables that may influence caregiver strain.

• Contemplate interventions that may assist caregivers in coping with their role.

• Become familiar with the use of PHOTOVOICE, an intervention to help caregivers discuss difficult topics.

Caregiver Strain: The Science

Julie H. Carter, RN, MN, ANPProfessor of Neurology

Oregon Health & Science UniversityPortland, Oregon

Are Families Invisible Patients?

Negative Outcomes• Decline in mental health

• Decline in physical health

• Decreased quality of life

Greenwell, et.al.2015

Definition of Caregiver Strain/Burden

The perception of emotional, social, financial, physical and spiritual difficulty in

performing the caregiver role.

Caregivers Experience Strain at All Stages of Disease

0

0.5

1

1.5

2

2.5

Worry Tension Frustrat ComProb

Strain-DirCare

MismatchExpect

Econ Burden Lack of Res Global Strain

Caregiver Role Strain Measures

Mean

Stages 4 & 5Stage 3Stage 2.5Stage 2Stage 1

Carteret.al1998

Why Do Some Caregivers Do Better Than Others? Transactional Model of Stress and Coping

The Research: A Framework for Helping Caregivers

• Predictors– Person with Parkinson’s disease

• Motor symptoms

• Neuropsychiatric symptoms– Predict more burden than motor symptoms

– Caregiver factors• Demographics

• Psychiatric symptoms

• Personality traits

– DBSMosley, et. al. 2017, Greenwall, et. al. 2015

Protective Factors

• Protective Factors:– Social support

– Personality: optimism and pessimism, sense of meaning, competence (self-efficacy)

– Good mental and physical health

– Mutuality: quality of the relationship

– Preparedness

Greenwell, et. al. 2015

Goal

Identify protective factors that offer an intervention opportunity.

Assessment Before Intervention

• Assessment of strain/burden• Assessment of capacity

– Age, other care demands, gender, mental and physical health

• Assessment of preparedness

Caregiver Interventions: What Do We Know From Research?

• Limited evidence for effective interventions in the PD literature.

• Lessons from the dementia literature:– Behavioral change requires psychological skills.– Interventions should address multiple stressors.– “One size does not fit all.”– Sufficient amount and duration of treatment has

better outcomes.– Outcomes should match the caregiver’s agenda.

Corry, M., et al. 2015, Mosely, et.al. 2017

Improving Resources to Counteract Demands

• Transactional model of stress and coping– Stress is an imbalance between demands and resources or

occurs when pressure exceeds one's perceived ability to cope.

– Resources in family caregiving.• Competence• Preparedness• Adequate information• Positive psychology.

Hudson,P. & Payne,S. Jr. of Palliative Care. 2011

Given,B. et. al. 2008

Interventions with Potential Merit

• Cognitive Behavioral Therapy (CBT) Dobkin, R.D.,2006, Secker & Brown, 2005, Dissanayaka, et.al. 2016)

• A standardized patient education program for patients with Parkinson’s disease and their caregivers. A’Campo, Wekking et. al. 2010

• Stanford’s Chronic Disease Self-Management Program Lorig, K. et. al. 1999 & 2001

Key Points: Take-Home Messages

1. Caregiver strain occurs at all stages of disease.2. CG strain is heterogeneous making effective

interventions complex.3. Assessment of caregivers is important to know who is

at risk and to identify needs.4. Interventions that teach skills to provide behavioral

change hold promise.

Selected References

• A’Campo, L.E., Wekking E.M., Spliethoff-Kamminga, N.G., LeCassie, S. (2010). The benefits of a standardized patient education program for patients with Parkinson’s disease and their caregivers. Parkinsonism and Related Disorders, 16(2), 89-95.

• Carter, J.H., Stewart, B., Archbold, P.G., Inove, I., Jaglin, J. et al (1998). Living with a person who has Parkinson’s disease: The spouse’s perspective by stage of disease. Movement Disorders, 13(1), 20-28.

• Corry, M., While, A., Neenan, L., Smith, V. (2015). A systematic review of interventions for caregivers of people with chronic conditions. Journal of Advanced Nursing, 71(4), 718-734.

• Dobkin, R., Allen, L., Menza, M. (2006). A cognitive-behavioral treatment package for depression in Parkinson’s disease. Psychosomatics, 47(3), 259-263.

• Greenwall, K., Gray, W.K., vanWersch, A., vanSchaik, P., Walker, R. Predictors of the psychosocial impact of being a carer of people with Parkinson’s disease: A systematic review. Parkinsonism and Related Disorders, 21, 1-11.

• Hudson, P., Payne, S. (2011). Family caregivers and palliative care: Current status and agenda for the future. Journal of Palliative Medicine, 14(7), 864-869.

• Lorig, K., Sobel, D., Stewart, A., Brown, B.W. et al.(1999). Evidence suggesting that a chronic self management program can improve health status while reducing hospitalization: A randomized trial. Medical Care, 37(1), 5-14.

Improving Caregiving Strain:PhotoVoice Methodology Overview

Joyce Bredesen, DNP, PHN, RNAssociate Professor

Metropolitan State University St. Paul, MN

PhotoVoice Background

• PhotoVoice Methodology:• Dr. Carolyn Wang• Participatory research method used with various

populations (assessment/research/intervention)• Elicits in-depth descriptions of realities through

pictures– Intended outcomes of PhotoVoice:

• Empowerment of participants• Increase community awareness• Promote dialogue to bring about change

(Catalani & Minkler, 2009; Hergenrather et al., 2009; Wang & Burris, 1997; Wang et al., 2004)

What Is PhotoVoice?

§ A way to express, reflect, and communicate everyday life experiences.

§ A technique that uses visual imagery through pictures to tell stories of the participant’s life realities.

§ Photographs, as visual images, along with the descriptions of the meanings attached to these photographs, are a powerful method to explore and address the realities and perspectives of life by the participant.

§ Brings about more in-depth discussion.Catalina & Minkler 2009; Fitzpatrick et al., 2012; Goldsworthy & Knowles, 2008; Mayfield-Johnson et al., 2014; Wang & Burris, 1997

PhotoVoice Process

• 2-3 meetings - may direct PhotoVoice assignment– 1st meeting - go over use of camera, ethics in taking pictures,

consent forms

– 2nd meeting - develop pictures/may use digital options/computer: discuss process

– 3rd meeting - review pictures, discuss what pictures mean to the person who took the pictures

• Individual meetings or group meetings:– Have used with both Parkinson’s care partners (individual) and

also with Parkinson’s support groups

Examples of PhotoVoice as an Intervention

§ Used in support groups throughout MN: The goal was to utilize PhotoVoice as a therapeutic intervention that could assist in bringing about a deeper discussion and healing to members within Parkinson’s disease support groups.§ Worked with 12 support groups (approximately 150 participants;

both those who had Parkinson’s and their care partners/family).

§ Many PhotoVoice projects include a ‘showing of the pictures and stories’ in a public setting.

Example of Questions to Direct Pictures (Used in Parkinson’s Support Groups)

1. Take pictures of things you do that help you cope with Parkinson’s. What things are helpful for your self-care?

2. Take pictures of the biggest challenges that you face on a day to day basis.

3. Take pictures of your support system and resources that you find helpful.

4. While you can’t change the diagnosis, take pictures of what your hopes and dreams are now.

*(Gave a worksheet to assist in remembering and documenting, as it was a month between meetings)

“Accepting that my body cannot do some of the things I used to enjoy like running and tennis, and feeling like my mind doesn’t work like it used to. This all affects my relationships with my family and my friends.”

*Learned more about each other and were able to share experiences about what they have enjoyed doing.

Example of Picture and Story (Regarding Challenges)

Results of PhotoVoice Use as an Intervention

• A total of 82 evaluation surveys were filled out (some couples completed together).

• 88% found Photovoice to be helpful or very helpful in bringing about more discussion within the support groups.

• 80% felt that taking the pictures and writing down their feelings about the pictures helped them to explore more about PD and how it affects them.

• 94% percent stated that it was helpful or very helpful to have others share their pictures and stories and to talk about their experiences.

Comments from Participants Regarding Use of PhotoVoice

• “I got to know my support group at a different deeper level, it was good.”

• “It brought about more discussion and a better understanding of each other.”

• “The pictures offered an opportunity to talk more in depth about some of our challenges and things that are harder to talk about.”

• “This project offered some time for good self-reflection. It made me think about how Parkinson’s affects my life.”

• “It was a good project to do together (as husband and wife). While he couldn’t take the pictures, he told me what he wanted me to take the pictures of. It helped us to talk about things we might not have talked about.”

References• Catalani, C., & Minkler, M. (2009). Photovoice: A review of the literature in health and public health. Health Education and

Behavior , Doi:10.1177/1090198109342084

• Fitzpatrick, A.L., Steinman, L.E., Tu, S.P., Ly, K.A., Ton, T.G., Yip, M., & Sin, M. (2012). Using Photovoice to understand cardiovascular awareness in Asian elders. Health Promotion Practice, 13(1), 48-54. DOI: 10.1177/1524839910364381.

• Goldsworthy, B. & Knowles, S. (2008). Caregiving for Parkinson’s Disease patients: An exploration of a stress-appraisal model for quality of life and burden. Journal of Gerontology, 63(6), 372–376.

• Hergenrather, K. C., Rhodes, S. D., Cowan, C. A., Bardhoshi, G., & Pula, S. (2009). Photovoice as Community-Based participatory research: A qualitative review. American Journal of Health Behavior, 3(6), 686-698.

• Mayfield-Johnson, S., Rachal, J.R., & Butler III, J. (2014). “When we learn better, we do better”: Describing changes in empowerment through photovoice among community health advisors in a breast and cervical cancer health promotion program in Mississippi and Alabama. Adult Education Quarterly, 64(2) 91–109. DOI: 10.1177/0741713614521862.

• Wang, C. C. (2006). Youth participation in Photovoice as a strategy for community change. Youth Participation and Community Change, Doi: 10.1300/J125v14n01_09

• Wang, C. & Burris, M. (1997). Photovoice: Concept, methodology, and use for participatory needs assessment. Health Education & Behavior, 24(3), 369-387.

• Wang, C. C., Cash, J. L., & Powers, L. S. (2000). Who knows the streets as well as the homeless? Promoting personal and community action through Photovoice. Health Promotion Practice, 1(1), 81-89.

• Wang, C. C., Morrel-Samuels, S., Hutchison, P. M., Bell, L., & Pestronk, R. M. (2004). Flint Photovoice: Community building among youths, adults, and policymakers. American Journal of Public Health, 94(6), 911-913.

• Wang, C. C., Yi, W. K., Tao, Z. W., & Carovano, K. (1998). Photovoice as a participatory health promotion strategy. Health Promotion International, 13(1), 75-86.

Upcoming Educational Programs

ATTP is a three-day course designed to increase knowledge of PD and build capacity for comprehensive inter-professional carein the treatment of Parkinson’s disease. Vancouver, BC Canada from April 4-6, 2018parkinson.org/attp

Allied Team Training for Parkinson’s Disease™ (ATTP)

Nurse Faculty ProgramApply to the Edmond J. Safra Visiting Nurse Faculty Program to help us prepare the next generation of nurses to care for the growing population of people with PD. parkinson.org/edmondjsafranursing

Physical Therapy Faculty ProgramLearn from internationally recognized PT experts in an intimate classroom setting and help change the future of physical therapy care in Parkinson’s. Summer 2018 at Boston University and Oregon Health & Science University parkinson.org/ptfaculty

Educational Resources

Information about Parkinson’s symptoms, medications, resources and more.parkinson.org/books

Available at 1-800-4PD-INFO or helpline@parkinson.orgMonday through Friday 9:00 AM – 5:00 PM ET.

Order Materials

National Helpline

Includes tools and information for people with PD to share with hospital staff during a planned or emergency hospital stay. parkinson.org/awareincare

Podcast: Substantial Matters New episodes every other Tuesday featuring Parkinson’s experts highlighting treatments, techniques and research.parkinson.org/podcast

Aware in Care Kit