Parkinson’s Disease PhotoVoice Project: The Care Partners

StoryJoyce Bredesen, DNP, RNKerry Keenan, MA, RN

Identified Problem: Parkinson’s disease (PD), Care Partners lived experiences.

• PD is an incurable neurodegenerative chronic disease that impacts all aspects of a person’s life.

• Literature supports the increased negative affects of PD on the primary care giver or care partner (Lau,et al., 2011; McLaughlin et al., 2010).

• Care givers or care partners taking care of late stages of PD have demonstrated an increase in depression, stress over reduced economic circumstances, reduced mental and physical health as well as demonstrated a diminished quality of life themselves.

(Berry & Murphy, 1995;Williams &Keady, 2008; Edwards & Scheetz, 2002; Lau, et al., 2011)

• IMPORTANT to support Care Partners in the Journey.

Purpose of Project • Increase awareness of what it is like living with

someone who has Parkinson’s disease.

• Empowerment of participants through sharing of their journey through pictures and stories.

• Promote dialogue among health care providers and the community, that potentially may lead to improved delivery of care and services to families who are living with Parkinson’s disease.

Demographics

Participants: After Institutional Review Board Approval through Metropolitan State University, St. Paul, twelve care partners living with someone who has Parkinson’s disease were asked to participate in the study. All twelve completed the project.

• 5 Males, 7 Females, all were Caucasian• Between the ages of 58 and 83

• Individuals living with Parkinson’s:• Diagnosed 1 ½ years ago to 28 years ago• Ages ranged from 67-84• 7 Males, 5 females, all were Caucasian• Two resided in a care center; one in a hospice residence

PhotoVoice PhotoVoice Methodology:• Dr. Carolyn Wang• Participatory Research method • Elicits in-depth descriptions of a person’s realities

through pictures

Intended Outcomes of PhotoVoice:• Empowerment of Participants• Increase community awareness• Promote dialogue to bring about change

PhotoVoice Process

• Participants were directed to take photographs of how Parkinson’s disease affects their life as a care partner.

• Met with participants individually 3 times. The third meeting was tape recorded as they described their pictures. The recordings were transcribed and themes were identified.

• Open-ended questions were asked when reviewing the pictures:1) Tell me why you took this picture and what it means to

you.2) What resources have been helpful and how could

resources be improved?3) How did you feel about taking the pictures?

Support Systems• Struthers Parkinson’s Center• Capistrant Parkinson’s Clinic• Family• Church/faith• Friends• Health care staff• Day Programs• Parkinson’s support group• In home services• Exercise programs• Social activities/community

Identified Needed Resources• Time away• Opportunities to volunteer• Activities with people who have similar

disabilities• 5 day/week day program• Companion• Elder attorney • A document care partners can provide to

health care providers regarding care needs in hospital

• Time alone to talk with health care provider

Results: Identified Themes• Losses/grieving

• Personal time• Daily activities/lifestyle• Dreams• Relationships/intimacy• Cognitive functioning • Loneliness

• Adapting to Changes• Everything takes longer to do• Roles • Managing personal belongings• Coping strategies• Accommodations• Modifying hopes and dreams

• Safety• Balance/Falls• Eating/choking

• Sleep disturbance• Time for self/self care

• Meditation• Exercise• Friends• Support groups• Respite

• Care Partner Priorities• Medication oversight• Exercise regime• Support systems/social interactions• Daily routine/time management

• Anticipating the future• Living arrangements• Financial planning• Resources

Loss/grieving

Adapting to change

Safety

Sleep Disturbance

Self-care/Time for Self

Care Partner’s Priorities

Anticipating the Future

The Journey

Capturing statements of the Care Partnersthrough the process

• “I don’t have Parkinson’s disease, but we have Parkinson’s disease together, because it affects my life too.”

• “The greatest burden is that I feel I have to be there all the time.”• “There are many losses with chronic disease, even if you still

have your spouse with you in the home.” • “I don’t want Parkinson’s to define who I am.”• “It surely isn’t what we planned.”• “It’s an isolating and emotional experience that goes on for a

very long time.”• “Taking care of someone with Parkinson’s is an all encompassing

role. You have no life.”

Significance of Findings for Practice• Further understand the lived experiences of

care partners.• Participants have identified needed resources.• Raise awareness for care providers to further

educate and explore resources.• Potential for enhancing care delivery to

families who are living with Parkinson’s.

Acknowledgements

• Thank you to all the participants for sharing a part of their life and their journey.

• Thank you to the Struthers Parkinson’s Center for assisting in this project. We especially want to thank Joan Gardner and Ruth Hagestuen.

• Thank you to the Edmond Safra Visiting Faculty program for the opportunity to learn more about Parkinson’s as well as to assist with the financial pieces of this project.

• Thank you finally to those who are living with Parkinson’s; you are our heroes. Thank you for your courage and strength as you are on this journey.

References

Berry, R.A. & Murphy, J. F. (1995). Well-Being of Caregivers of Spouses with Parkinson’s Disease. Clinical Nursing Research , 4:373.

Edwards, N.E. & Scheetz, P.S. (2002). Predictors of Burden for Caregivers of Patients with Parkinson’s Disease. Journal of Neuroscience Nursing, 34(4):184-190.

Lau, K.M., Phil, M. & Au, A. (2011). Correlates of Informal Caregiver Distress in Parkinson’s Disease: A Meta-Analysis. Clinical Gerontologist, 34:117-131.

McLaughlin, D., Hasson, F., Kernohan, W.G., Waldron, M., McLaughlin, M., Cochrane, B., & Chamers, H. (2010). Living and coping with Parkinson’s disease: Perceptions of informal carers. Palliative Medicine 25(2):177-182.

Williams, S., & Keady, J. (2008). A stony road…a 19 year journey: ‘Bridging’ through late-stage Parkinson’s disease. Journal of Research in Nursing, 13:373.