Dear User of Non-Invasive Ventilation,
First, I want to thank Post-Polio Health International (PHI) and International Ventilator Users Network’s (IVUN) Executive Director, Joan Headley, for informing you of this project.
I am working on a pilot project about the “Well-Being of Users of Non-Invasive Ventilation.” If you use non-invasive ventilation (NIV), I would appreciate if you would take the time to complete brief validated questionnaires by Sunday, July 5, 2009. Non-invasive ventilation (NIV) includes using a mouthpiece or a nasal or full-face mask with a Bi-Pap or volume ventilator.
Questionnaires
To complete the questionnaires, please copy and paste the link below into your internet’s search browser, or click on the link:
http://www.surveymonkey.com/s.aspx?sm=4vOXvFAG_2bYKDl8YIymmQQQ_3d_3d
Completing the questionnaires usually take about 10 minutes. Most often, your first response to a question is the most accurate. Once you open the questionnaires, you need to answer all of the questions at one time. The system will not allow you to answer some questions, save them, and then go back later and answer the rest.
Purpose of Pilot Project
The purpose of collecting data from these questionnaires is to identify personal issues that may be impacting the lives of users of NIV. I have been asked to contribute to writing a textbook chapter about users of NIV and would like to see if there are any needs that I can address that would provide insights to the health professionals who treat us. I am collaborating with two pulmonologists who are experts in the field.
As a vent user myself for over 25 years and a behavioral health professional, vent users and family members have shared personal difficulties with me through the years. To add to the anecdotal evidence and my perceptions, I decided to gather data in a more systematic way.
This is an independent pilot project that is not affiliated with an institution. Instead, a team of Post-Baccalaureate Pre-Medicine students with research experience have volunteered their assistance to complete this project. Depending on our findings, this pilot project may provide the basis of a grant proposal to further research this subject.
Confidentiality
Your online responses are completely confidential and anonymous. The internet will automatically forward your responses to a survey firm that will compile the data and only inform us of total response and not any identifying information.
Submitting Responses
Please respond directly on-line, if you are able. You also can print the questionnaires and fax them directly to me at 708-354-3670 by Sunday, July 5, 2009. Faxed responses will be confidential and your forms will be shredded after we tally your responses.
My Background
I am interested in vent user issues given my personal and professional background:
- As a polio survivor with post-polio syndrome, I had used NIV for over 20 years and now use a trach.
- I have been involved with Post-Polio Health International (PHI) since Gini Laurie organized the first post-polio conference in 1981. I served on PHI’s Board of Directors for six years, resigning because of my health.
- I chaired the Board of Chicago’s Independent Living Center in the early ‘80s.
- Professionally, I have worked primarily in counseling and coaching roles. As a Certified Employee Assistance Professional (CEAP), I managed a corporation’s Employee Assistance Program. This mainly involved assessing individuals’ personal problems and referring them to appropriate resources. In assisting employees resolve work problems, I advised managers on accommodating employees with disabilities.
- As the corporation’s Managed Mental Health Program Manager, I negotiated an increase in behavioral health benefit coverage by presenting research data that showed how effective, longer-term treatment produced better outcomes.
- I have over 20 years of continuing education in behavioral health, often with leading experts in the field, on subjects including but not limited to addictions, psychological conditions, trauma, and family systems.
- After going on full-time disability, I became certified as a Neuro-Linguistic Programming (NLP) Practitioner and have worked part-time as a Life and Career Coach, as my health allows. I currently coach pre-med students in return for the time they spend volunteering to perform my trach care.
- On behalf of PHI/IVUN, I have written newsletter articles and presented at conferences. Karen Kennedy, MSW, RSW, and I co-authored a series on trauma issues. Bill Miller, who uses a trach for a SCI, and I presented on “Intimacy and Sexuality for Ventilator Users” at a CHEST conference. And this year, I co-presented at PHI’s conference on “The Option of a Trach” and “Effective Family Communications.”
- Finally, I have found that resolving my own personal obstacles, some related to growing up in an environment with addictions and emotional illness, has helped to improve the quality of my life and my ability to cope with the losses related to post-polio syndrome and breathing difficulties. Rhoda Olkin, PhD addresses the impact of childhood experiences on adults in her highly-researched book, What Every Psychotherapist Should Know about Disability. Having learned a great deal from my own personal and professional journeys, I value opportunities to educate health professionals as well as to offer vent users options for resolving obstacles that stand in the way of living with ease, enjoyment, and loving, supportive relationships.
I hope that this information convinces you to participate in this pilot project. Of course, your participation is totally voluntary. If you have any difficulties accessing the questionnaires or questions about this project, please forward them to me at lindabieniek@sbcglobal.net.
Thank you for considering this request.
Best regards,
Linda Bieniek
Member, Post-Polio Health International
and International Ventilator Users Network