Human Subjects Review Board

RESEARCH REVIEW COVER PAGE

Project Title: Photovoice as an Intervention with Parkinson’s Disease Support Groups

Name of Principal Investigator(s) and role (e.g. faculty, student, etc.):

Joyce Bredesen, DNP, RN Associate Professor

Department/College: School of Nursing

Metropolitan State University E-mail address(es) joyce.bredesen@metrostate.edu

Phone #: 651-793-1365

Responsible Project Investigator (RPI) (faculty/staff sponsor for student research)      

The above named investigators and associates are submitting an application that describes a proposed research study involving human subjects, including its purpose and the information to be collected. It also describes the provisions for confidentiality and for the security of individually identifiable records and record information. The investigators and associates will report and/or publish research findings and conclusions in a manner that does not permit identification of research participants (i.e., subjects). The investigators and associates will destroy any individual identification associated with the records and record information as soon as the purposes of the research project have been accomplished. The investigator(s) and associates will assure that the procedures described in the study will be carried out as described. The study design shall not be altered in any form without written approval of the HSRB. Any problems or adverse consequences to subjects will be immediately reported to the HSRB. No research will be conducted, including recruitment of participants, until this proposal has been reviewed and the research approved by the HSRB. In the event the investigators or associates fail to comply with any terms of this agreement, the HSRB has the right to take such action as it deems appropriate, including stopping the research projectThe commitments made in the foregoing statements are hereby acknowledged and accepted:

Investigators' and Associates' Names Signatures Date

Joyce Bredesen, DNP, RN Joyce Bredesen June 30, 2014 *A signed hard copy will follow in the mail to the Human Subjects Review Board

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RESEARCH REVIEW APPLICATION

PROJECT DESCRIPTION

1. Why are you doing the research project and what do you hope to find out (i.e., research purpose)?

The intent of this research project is to utilize the Photovoice Methodology as an intervention within 20-25 Parkinson’s support groups. This process will empower the participants to share their perceptions and views within a safe environment on how the disease affects their day to day living. Empowerment is done by giving cameras to the participants within the Parkinson’s support groups. They will be instructed to take pictures related to a group of identified questions over a 3 month period. The Photovoice methodology outcomes are identified as: a) empowerment of the participants, b) bringing about awareness and dialogue c) and promoting change. Through this process, there will be a better understanding of how Parkinson’s disease affects the families and offer important insight on the effectiveness of the Photovoice intervention as a tool that may impact or enhance discussion; creating an environment conducive to healing, sharing, and coping with Parkinson’s disease.

2. Which of the following research methods will you use in the project? Check all that apply.

Ethnography/participant observation In-depth/semi-structured interviewing Survey Focus group Experimentx Other(s), please specify: PhotoVoice-participatory research method as an intervention tool within support groups

3. What will participants be asked to do and for what amount of time? Describe the procedures of the research and attach a copy of any surveys, interview questions, experimental protocols, instructions, etc.

The researcher will work with the Struthers Parkinson's Center in Golden Valley, Minnesota to identify Parkinson’s support groups who might be interested in being a part of this project. The researcher will meet with the facilitators of the support groups either individually or two or three at a time to share information about the project. The facilitators will go back to their support groups and discuss the possibility of the group working with the Photovoice intervention. If the group is willing to learn more about the project, the researcher will meet with the group to go over the project, answer questions and give direction. If the group is willing to be a part of the project, each participant within the support group will sign a consent form (Appendix I). The participants will be told that risks would include the possibility of losing the camera, feelings of discomfort in taking the pictures, as well as feelings of discomfort in sharing the stories associated with the pictures.

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After the participants have signed the consent form, the participants will be given a photovoice worksheet to help them keep a record of their pictures (Appendix II). They will have an opportunity to write down a reflection on the pictures as they take them (in some cases it will help them to remember why they took the picture). They will also have the opportunity to give consent for the researcher to use their pictures and stories in publications or public forums to increase understanding of the effects Parkinson’s disease has on the individual and the family (Consent form- Appendix I, and Worksheet- Appendix II). No pictures that can identify anyone will be made public in forums or in any publications. If a participant agrees to share any of their pictures and stories, a coding method of the pictures and stories will be implemented to assist in maintaining confidentiality.

Each member of the support group will be directed to take pictures around one of the identified questions (Appendix III). They will be instructed to take pictures around a different question for 3 of their support group meetings (the support groups meet every other week or monthly). At each meeting they will be requested to bring 3-5 pictures that they have taken to share with the group and discuss. The facilitators of the group will be instructed by the researcher on how to facilitate discussion around the pictures (modified SHOWED instrument Appendix IV). During the following meeting, the researcher will return to the support group to talk about the process and administer a survey on the effectiveness of the Photovoice intervention (Appendix V).

The participants will be encouraged to use their own digital cameras, phones that have the ability to take pictures, or ipads. If they do not have access to a digital camera, one will be loaned to them through the researcher for the project. Each support group will be given 20 dollars cash to put towards development of the pictures for discussion so it is not a hardship on anyone in the group. Each participant will be responsible and agree to have the pictures developed to bring to the meetings.

4. Where will the research be carried out? Attach a copy of any letters of cooperation from non-Metropolitan State University sites, if necessary.

The support groups will meet at their designated meeting sites and times. Each participant will be directed to take pictures associated with an identified question (example: What things are helpful for your ‘self-care’) and bring 3-5 pictures to 3 of their support group meetings at their designated site.Notes of support from the Struthers Parkinson’s center are attached (Appendix VI).

5. If deception will be used (the full purpose of the research is not disclosed to the participant), provide your justification for doing so and describe how and when participants will be debriefed. Include a copy of the debriefing document and/ or script.

N/A

TYPE OF FUNDING SOURCE

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6. Please check off the type(s) of funding source(s) for your study, if any:

Internal/university/funding

Foundation, name:      

Corporate sponsor:      

Federal grant, name of funding agency and grant #      

x Will fund independently

If you would like certification of approval to be sent to the funding source, provide the followinginformation:

Name of Funding Source Contact:       Phone:      Address:       Fax:      Address:      

E-mail:      

RESEARCH PARTICIPANTS

7. How many people do you expect to participate in your study? 20-25 support groups with

approximately 5-10 people in each support group for a total of approximately 100-200 people.

8. What is the potential age range of those participants? Potential range- 30-90 years old

9. What are the likely characteristics of study participants (e.g., students, race/ethnicity, gender, sexual orientation, marital status, etc.)?

English speaking adults ranging from approximately 30-90 years old, males or females, who have been diagnosed with Parkinson’s disease or are living with someone who has Parkinson’s disease and belong to a Parkinson’s Disease Support Group.

10. What characteristics would exclude people (who are otherwise eligible) from this study (e.g., pregnancy, disability, medications, etc.)?

Non-English speaking adults and those who are not involved with any support groups for Parkinson’s disease.

11. How will people be identified and recruited? Describe the strategies you will use to recruit research participants and the provisions you will take to protect their privacy, and to minimize potential coercion or the appearance of coercion. Attach a copy of advertisements, flyers, contact letters, interview scripts, etc.

The participants will be community members who have been diagnosed with Parkinson’s disease or are living with someone who has Parkinson’s disease and are in a Parkinson’s support group.

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Recruitment will be facilitated by the Struthers Parkinson Center through Park Nicollet in Minneapolis, Minnesota. Identified support groups associated with the Struthers Parkinson’s Center will be asked if they want to participate in the PhotoVoice project. Initial communication will occur through email and by phone with the facilitators of the groups.The researcher will meet individually or in small groups with the facilitators to describe the project and then meet with each of the support groups if they are interested in being a part of the project.

12. Will participants be given any gifts, payments, services without charge, or extra course credit in exchange for their participation? x NO, $20.00 will be given to each support group to assist in development of the photographs. YES, explain:

PROTECTION OF HUMAN RESEARCH PARTICIPANTS

13. If participants will be members of a vulnerable population (e.g., children, prisoners, pregnant women, mentally disabled, elderly, non-English speakers, or economically/educationally disadvantaged individuals) describe the precautions you will take to protect their rights and welfare.

An Institutional Review Board application and process will be completed prior to the research project. The researcher will meet with the facilitators and the support groups to discuss the consent form and answer any questions or concerns they might have. The researcher will discuss the purpose of the project, potential risks and benefits, and inform the participants that they may discontinue the project at any point, refuse to discuss or share any pictures, and remain anonymous (see consent form). A consent form will be signed by the participant after the participant states understanding of the PhotoVoice project at a support group meeting.

Confidentiality will be stressed within the support groups. Any identifiers and data obtained by the researcher will be kept in a locked file cabinet at Metropolitan State University in the researchers locked office. A coding system will be utilized that will not identify any of the participants or support groups. While confidentiality will sought to be maintained, the risks and benefits will be discussed with the participants within the support groups.

Informed Consent Process14. Describe the procedure(s) that will be used to fully inform participants and/or their legal

guardian of the research, their rights in regard to participation and to document their informed consent/assent. Please refer to the HSRB webpage (www.metrostate.edu/hsrb) for elements of

informed consent that should be included and examples of consent forms and survey cover letters. Attach a copy of any consent forms, cover letters (for surveys), and/or verbal scripts to be used.

An Institutional Review Board application and process will be completed to proceed with the research study of the PhotoVoice project. The researcher will discuss the purpose of the project, potential risks and benefits, and inform the participants and the support group that they may

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discontinue the project at any point, refuse to discuss or share any pictures, and remain anonymous to maintain confidentiality (see consent form). A consent form will be signed by each of the participants in the support group after stating understanding of the PhotoVoice project.

The researcher will discuss the intent of the PhotoVoice research project with the participants and support groups. The PhotoVoice technique will be explained. The outcomes of the project will be discussed and explained. The participants will be offered an opportunity to ask questions and discuss outcomes.

The participants will be informed that at any time they may discontinue the project with no consequence to them. They will be informed that they may choose not to talk about any of the pictures they have taken. The participants do not have to share any of their pictures and stories outside of the support group if they so choose. The participants will also have an opportunity to share their pictures and stories with the public through publications or public forums.

The participants will be informed of safety concerns and risks associated with the project (as listed in the benefits and risk section).

Benefits and Risks15. Describe the potential benefits of this research for individual participants. If none, state “None.”

Direct benefits: The direct benefit will be discussing the pictures within a supportive environment that may allow opportunity to share feelings and promote healing.

16. Describe the potential benefits of this research to community/society. If none, state “None.”

Indirect benefits: The indirect benefits would include incorporating the Photovoice intervention within support groups to facilitate discussion, sharing and healing. The pictures and stories that the participants are willing to share with the public will increase knowledge and understanding about the effects of Parkinson’s disease.

Describe the nature and degree of possible risks to participants (injury, stress, discomfort, invasion of privacy, and other psycho-social or physiological risks) and what steps you will take to minimize these risks. Also explain any provisions to care for subjects in case of adverse effects (e.g., referral to counseling services).

Risk 1: The participant may experience some discomfort in taking pictures of the environment they live in and feel an invasion of privacy to themselves or those around them.Risk 2: The participant may be uncomfortable describing the pictures within the support groups. Mitigation 1: Training will be given on taking pictures and discussion will take place concerning comfort levels of picture taking. The participants will be instructed to maintain

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privacy of those around them through a discussion of what they feel would be an invasion of their own privacy. Mitigation 2: The participants and support groups will be given opportunities to talk with the researcher about any concerns during the process. The participant within the support group will be informed that at any time they can discontinue the project. Every opportunity to make the participant comfortable will be taken into consideration through the process.      

17. Explain how the benefits outweigh the risks to research participants.

The risks to the participants are minimal. The benefits will include increased understanding of the effectiveness of the Photovoice intervention and increased knowledge and understanding of how Parkinson’s disease affects the daily life of those who are experiencing it.

Confidentiality18. Will you record any direct identifiers of participants (i.e. names, addresses, telephone numbers,

etc.)?

x NO YES

19. How will confidentiality be maintained (e.g., use of pseudonyms in reports, elimination of identifiers in data, coding system to track responses, identifiers and data kept in separate locked files, etc.)?

Information regarding the participants and support groups will remain confidential and they will not be able to be identified. The researcher will eliminate any identifiers in the data that is collected. The identifiers and the data will be kept in a locked file cabinet at Metropolitan State University. A coding system will be utilized that will not identify any of the participants or support groups. While confidentiality will sought to be maintained, the risks and benefits will be discussed with the participants (see consent form).

20. If the researcher plans to delegate participants’ recruitment, research implementation, transcription, or data coding to research associates or other non-signatories to this proposal, what training or other procedures will you use to ensure confidentiality?

Recruitment will be facilitated by the Struthers Parkinson Center through Park Nicollet in Minneapolis, Minnesota. The Center specializes in working with families and individuals who have Parkinson’s disease and maintains confidentiality through their organizational rules and processes. The Center will help in identifying support groups within communities (the researcher will be attending support groups), the researcher will be the primary recruiter.

21. Where will the research materials (e.g., data, tapes, signed consent forms) be stored and who will have access to it?

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All information and gathered data will be kept in a confidential file drawer that will be locked and will be housed at Metropolitan State University. Access to this information will only be available to the researcher and Metropolitan State University Institutional Review Board if requested.

22. How long will the research materials be retained?

The data will be kept in a locked file cabinet for 2 years as identified by the IRB.

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CHECKLIST FOR INVESTIGATORS

All questions on the Research Review Application have been fully answered and completed. If a

question is not pertinent to your research, you may answer “not applicable.”

All supporting documents have been attached and adequately labeled, including:

o Survey instruments and cover letters

o Interview questions and scripts

o Recruitment materials

o Informed consent documents and verbal scripts

If the study requires approval of another committee or cooperating agency, documentation of

approval or notice of application has been attached.

If the study involves a student as principal investigator, a Student as Principal Investigator

Worksheet (can be downloaded from www.metrostate.edu/hsrb) is completed and attached to this

application.

Appropriate signatures have been secured on the Research Review Cover Page.

A copy of the entire application, including cover page has been made for the investigator’s (and

instructor/advisor’s) records

If application is sent by electronic mail, it should be sent as one document. Do not send multiple sections as separate attachments; combine them into one document before sending. Completed application, including cover page should be sent to:

Human Subjects Review Board (HSRB)Metropolitan State UniversityProvost’s Office, 204 New Main, St. Paul CampusSt. Paul, MN 55106

OR (preferably)By e-mail to HSRB@lists.metrostate.eduIf sent by e-mail, any signature pages must also be sent by intercampus or ground mail to the HSRB office.

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Human Subjects Review Board

STUDENT AS PRINCIPAL INVESTIGATOR WORKSHEET

Use this worksheet in collaboration with the faculty sponsor to demonstrate research preparedness of the student investigator.

To be completed by the student investigator:

Name      

Briefly describe the training or coursework that you have completed in research ethics and/or research subjects protection.

To be completed by faculty sponsor (Responsible Project Investigator):

Student academic level: Undergraduate Graduate

Is the scope of the proposed project, including anticipated risks and benefits, appropriate to student research?

YES NO, if no, explain:      

As faculty sponsor for the named student investigator, I assume the roles and responsibilities required to oversee the conduct of this research, prevent harms to research participants and foster benefits to the participants. I will report any changes in the project, adverse events, or incidents to the HSRB that may affect the conduct of this project.

_______________________________________ ___________Faculty Sponsor Signature: Date

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To include additional information, click within the shaded area below:

Appendix I-Consent Form

______

PhotoVoice CONSENT FORM

You are invited to participate in a PhotoVoice research project that will use pictures to describe how Parkinson’s affects your daily life. You were selected because you belong to a Parkinson’s support group. Please read this form and ask any questions you may have before agreeing to be in the project. Joyce (the researcher), will talk to you about what the PhotoVoice project is and will give you time to ask questions.

Study PurposeThe purpose of this project is to see if Photovoice (taking pictures, sharing the pictures and talking about them) will be helpful within your support group to enhance discussions and to assist in identifying coping strategies for all who are living with Parkinson’s disease or living with a family member who has Parkinson’s disease. Photovoice has been found to be an effective therapeutic intervention in other settings as it leads to visual evidence (the picture) and triggers thoughts and discussion.

Study ProceduresIf you agree to join this project, you will be asked to do the following:

Joyce (the researcher) will meet with your support group to go over the information about the Photovoice project. You will be instructed to take pictures associated with identified questions related to how Parkinson’s disease affects your life. At the following meeting you will bring back 3-5 pictures that you have taken based on the question that the facilitator instructed you to take pictures about. During your support group meeting you will share your pictures and stories. You will do this for 3 support group meetings in a row. Following the 3rd meeting Joyce will return to the group to talk about the process, answer any questions, and administer a questionnaire/survey on whether or not you found the Photovoice project helpful. At any time you can choose not to be a part of the project or to share any of the pictures you have taken.

You will be asked to take pictures with your own camera, cell phone, or ipad. If you do not own a camera, one can be loaned to you for the project by the researcher. You will be asked to develop your 3-5 pictures to bring to the three support group meetings. Twenty dollars cash will be given to the facilitator to assist with the development of the pictures.

You will receive a worksheet to document your pictures and to remind you of why you took the picture.

Risks of Study ParticipationThe PhotoVoice Project has the following risks. It is important to make sure you are safe when taking your pictures.

You may be uncomfortable because you will be taking pictures of things that are personal to you. You may be uncomfortable with describing the pictures within your support group. You can choose not to discuss any of your pictures. If at any time, you feel you want to withdraw from the project, you are free to do so.

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Benefits of Study ParticipationThe direct benefit will be discussing the pictures within a supportive environment that may allow opportunity to share feelings and promote healing. Photovoice gives you a opportunity to share your story through your pictures.

The indirect benefits would include incorporating the Photovoice intervention within support groups to facilitate discussion, sharing and healing. The pictures and stories that the participants are willing to share with the public will increase knowledge and understanding about the effects of Parkinson’s disease on individuals and families.

CompensationThere will be no monetary compensation for your time or for the project.

ConfidentialityAny gathered information will be kept in a safe locked file. Your name will not be on any information or pictures. In any publications or presentations, it will not include any information that will make it possible to identify who you are.

Voluntary Nature of the PhotoVoice ProjectYou can choose to be in the PhotoVoice project or not. If you decide to be in the project, you can stop at any time.

Contacts and QuestionsThe Project researcher/investigator is Joyce Bredesen. She teaches nursing at Metropolitan State University. You can call her on her cell phone at 763-360-5947 if you have any questions or concerns. If you have any other questions or concerns regarding this project and would like to talk to someone other than Joyce, you can contact Dr. Ann Leja, Dean, at Metropolitan State University at (651) 793-1368. A copy of the consent form will be maintained in a locked file cabinet at Metropolitan State University.

Statement of ConsentI have read the above information. I have asked questions and have received answers. I consent to participate in the study.

Print name:_______________________________________________

Signature of participant: _______________________________________________ Date: ________________

Signature of Investigator: _____________________________________________ Date: ________________

*Are you willing to share selected pictures and stories with the researcher (Joyce) for publication or to share at a public forum to increase understanding of what it is like living with Parkinson’s disease or with someone who has Parkinson’s disease? If yes, please sign again on the line below:

_____________________________________________________________Date:______________Signature to share pictures and stories

Appendix II- Worksheet

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Worksheet for Taking Pictures for Photovoice Project:Bring this worksheet with you (one for each picture) to your support group meeting.

What question is related to the picture? __________________________________________________________________________________________________________________________________________________________________________________________________________________________________________Date Picture was taken: _____________________________________________________________________________What is this picture of: _____________________________________________________________________________Write down in a couple of sentences or a paragraph on why you took this picture? What does it mean to you? ______________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________**Are you willing to share this picture and your above story with Joyce (researcher for project) to be used to increase knowledge and understanding of what it is like to live with Parkinson’s disease or to live with someone who has Parkinson’s disease?______ Yes ________NoIf yes, please sign your name:

_________________________________________________________Date:________________Signature to allow pictures and stories to be used for publication/public

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Appendix III-Identified Questions for Picture Taking

Identified questions for Photovoice Intervention

The purpose of this project is to see if Photovoice could be used in Parkinson’s support groups as a therapeutic tool to aid in discussion and assist in coping with Parkinson’s disease for either the caregiver or the person who has been diagnosed with Parkinson’s.

The following questions will be utilized within the support groups.Participants will take pictures associated with each of the three questions/areas noted below. After the pictures have been taken, the participants will share theirpictures within their support group and discuss them. A consent form will besigned by each of the participants.

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

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

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

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

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Appendix IV- Modified SHOWeD instrument

Questions to be utilized to facilitate discussion for the Photovoice Project within the Support Groups:

1. Tell the support group why you took this picture and what it means to you?2. How does it relate to your health or your family’s health? 3. How can the community improve services or resources that would be helpful?4. How did you feel about taking the pictures?

Modified from the SHOWeD instrument used with the PhotoVoice methodology:

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.

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Appendix-V- Evaluation Survey

SurveyPlease answer the following questions using a scale of 1-10 (10 being the most helpful and 1 being the least helpful), circle your response:

1. Did you find the pictures helpful in bringing about more discussion within your support groups?

Very helpful helpful Somewhat helpful Not helpful at all

(9, 10) (6, 7, 8) (3, 4, 5) (1, 2)

Please Comment:

2. Do you feel taking the pictures and writing down your feelings about the pictures has helped you to explore your feelings more around Parkinson’s disease and how it affects you?

Very helpful helpful Somewhat helpful Not helpful at all

(9, 10) (6, 7, 8) (3, 4, 5) (1, 2)

Please Comment:

3. Did you find it helpful to have others share their pictures and stories with you?

Very helpful helpful Somewhat helpful Not helpful at all

(9, 10) (6, 7, 8) (3, 4, 5) (1, 2)

Please Comment:

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4. Do you think using Photovoice (taking pictures and sharing stories) would be beneficial to use in other support groups? Please explain why or why not.

________ Yes _________ No

Please Comment:

5. What did you find to be the most beneficial for you during this project and please describe why:

Appendix VI- Notes of support

From: Gardner, Joan [Joan.Gardner@ParkNicollet.com]Sent: Tuesday, October 08, 2013 2:08 PMTo: Joyce BredesenSubject: RE: favor :)

Hi Joyce,

I heard the Safra team had a nice dinner together last week. I am sorry to have missed it. However, I made the right choice to leave the conference and celebrate my Uncle’s life with family. Regarding the presentations. There is no need to make any changes for the talk next week. The experience of your PhotoVoice presentation for health care professionals is powerful and I think makes one think of current practices toward caregivers and the impact of PD, and hopefully will evoke a sense of need for change. I feel now that the experience for the patient might be different. I feel the patient group (and caregiver group as well) might benefit from some of the more positive messages of how to cope so Mr. Parkinson does not take over completely. I would welcome the opportunity to talk about the presentation for the community members if indeed you and Kerry present at any support groups, and certainly for the Arts Café next year.

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Your idea to expand the PhotoVoice project is an amazing idea. Will you focus on persons living with PD, or include caregivers as well? I think there are support groups that would welcome the opportunity. I will speak to Rose who has the most contact with the groups.

I spoke with Catherine our research director. We both think Martha would be a good mentor/partner in this project. Catherine also offered her support as you set up study design, etc.

This is very exciting Joyce. Thank you for the contributions already made, and I look forward to continuing our partnership as you build on this project. I have a few ideas on which support groups might be good to target, but want to speak with Rose as well.

See you next week.Joan

Joan Gardner, RN BSNClinic Supervisor Struthers Parkinson's CenterPark Nicollet Health Services Methodist Hospital6701 Country Club Drive Golden Valley, MN 55427Direct 952-993-5214 Fax 952-993-2250A National Parkinson Foundation Center of Excellence

E D M O N D J. S A F R A Visiting Nurse Faculty Program

October 10. 2013 Re: Joyce Bredesen, DNP, RN

To whom it may concern,

I am writing in support of the work of Joyce Bredesen which is being presented for an upcoming sabbatical.

I have had the pleasure of meeting and collaborating with Joyce with her photovoice project in Parkinson’s disease, which is unique and extremely worthwhile.

Joyce attended the Edmond J Safra Visiting Nurse Faculty (VNF) Program in Minneapolis in 2013. This is a nationwide program, in its 5th year, whose purpose is to teach nursing faculty about Parkinson’s disease (PD) so they in turn can teach

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nursing students. The program was developed as a result of a survey which showed that content on PD was not present in approximately 50% of nursing schools, and when it was it was inadequate and outdated. Furthermore, 70% of faculty teaching the content felt they did not have the knowledge or understanding to teach the content. Yet, PD is the second most common neurodegenerative disease of adults, second only to dementia. Joyce attended the program which offers 2 days of didactic content, 2 days of clinical experience with patients, and the opportunity to attend a PD support group and engage in an independent project. Joyce chose the photovoice project, which to my knowledge, has never been done in PD in the past. She presented her work at the World Parkinson Congress in Montreal in October, 2013, and it was very well received, and spurred a lot of interest.

I believe that on-going work in the photovoice field of Parkinson’s disease can benefit the nursing profession while providing a therapy for the patients and caregivers. Parkinson’s disease can be a very debilitation disorder with a lot of variability and unpredictability which is difficult for nurses to understand. Studies have shown that when hospitalized, 75% of patients do not correctly receive their PD meds, and sometimes they are not given at all. This leads to pneumonias, DVTs, and longer hospital stays. A project such as the photovoice project helps students “feel” the emotions a patient and caregiver go through and therefore provides learning in the affective realm. This is very powerful and long-lasting. This learning stays with nurses longer than reading an article or studying for a test.

I can imagine this project escalating on several front----in PD support groups, caregivers’ groups, public awareness campaigns, fund raising campaigns, and most importantly, in teaching nursing students the value of listening carefully to the cues patients and families under distress often present subtly. When fully aware of the plight of the condition, nurses are in a much better position to develop individualized care plans to help patients and families’ quality of life.

If I can be of any further support in the work of Joyce Bredesen’s sabbatical plan, I welcome you to contact me.

Sincerely,

Gwyn M. VernonGwyn M. Vernon, MSN, CRNPNational Director, Edmond J Safra Visiting Nurse Faculty ProgramNeurologic Nurse Practitioner, University of PAClinical Instructor, School of Nursing, University of PA

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