You are being invited to take part in a research study exploring individuals’ experiences of oxygen therapy with pulmonary hypertension. Before you decide whether to participate, it is important that you understand why the research is being conducted and what it will involve. Please read the following information carefully.
Purpose of the study
The purpose of this study is to understand the lived experiences of people with pulmonary hypertension who use oxygen therapy – the good and the challenging. We want to understand its effects across all aspects of life: physical, logistical, psychological, social, and relational.
The findings will help improve healthcare practices and patient support and guide the production of new resources and materials to help those prescribed oxygen.
Do I have to take part?
Participation is entirely voluntary. You are free to withdraw at any time without giving a reason and without any negative consequences. If you would like to cancel your scheduled interview with our researcher, please email mary@phauk.org.
What will happen if I take part?
If you agree to participate:
Are there any risks or benefits?
There are no significant risks anticipated. Some questions may feel personal, and you may choose not to answer any question.
The findings of this study will guide the production of support materials and resources for people with PH who are prescribed oxygen. This may be of direct benefit to you, and it will benefit those prescribed oxygen in the future. Beyond this, we envisage the findings providing important evidence to share with key stakeholders, including clinical teams, oxygen providers, and policymakers to improve understanding and, where indicated, inform service improvements. We also anticipate that the outcomes of this project may form the basis for publications and presentations at conferences, both patient-facing and clinical.
Confidentiality
All information collected will be kept strictly confidential.
Data protection
Your data will be handled in accordance with relevant data protection regulations (e.g., GDPR). Data will be stored securely and only accessible to the research team.
What will happen to the results?
The results of this study will be shared by the PHA UK online and in our member magazine. The study may be published in academic journals or presented at conferences. No identifiable information will be included.
If you have any questions about this study, please contact Mary Ferguson at mary@phauk.org.
If you have any concerns or complaints about this study, please contact Shaun Clayton, Operations and Finance Director, PHA UK, who is independent from the research project: Email: shaun@phauk.org Telephone: 0300 373 5367
