Surveys

Please note that COPD Support Ireland is in no way endorsing any of these surveys / studies. We are merely making them available to view and each individual can decide themselves if they wish to participate in any study or survey. If you are interested in participating in any of these then please contact the organisation / individual undertaking the study / survey directly.


PhD research study; Awareness of COPD – By Jennifer Dean King

12/07/24

As part of my PhD research in Maynooth University on Chronic Obstructive Pulmonary Disease, I am conducting a short survey on the awareness of the disease of people living in Ireland. This is open to anyone who is living in Ireland and is 18yrs and over.

This survey was designed as a result of a key finding from my earlier qualitative study. Both individuals with COPD and their caregivers indicated that there was a lack of awareness about the disease. This deficiency can have potential impacts on managing the disease, as well as on the wellbeing and quality of life of those affected.

The survey takes a maximum of 15 minutes to complete. Your participation in the survey would be very much appreciated.

Click the link to participate

https://maynoothpsychology.qualtrics.com/jfe/form/SV_9pJhR05pJ6aHMqi


Questionnaire survey on accessibility of digital healthcare by the research team of the University Medical Centre Groningen (UMCG)

In healthcare, technology is increasingly being used. The aim of this is to improve health outcomes and reduce workload for staff. Unfortunately, many people are not digitally skilled. In this research, we ask people with COPD for their opinion. What do you think of this development? And what can healthcare organizations do to make digital healthcare as accessible as possible? We are looking for people with COPD to fill in a questionnaire about this topic. The results will be used to inform policymakers and healthcare professionals about the needs of people with COPD.

Do you want to participate?

Click HERE to go to the online questionnaire.

You do not have to put a name anywhere; this research is completely anonymous.

This means that the researchers do not know who filled in which questionnaire.

Thank you in advance for your cooperation!

Dr. Esther Metting (Principal Investigator)


How HR Can Create Psychological Safety in the Workplace for Employees Living with Invisible Disabilities

My name is Aoife Turner.

I am currently studying for my Masters in Human Resource Management at Munster Technological University (Ethics Approval OPD-MR-MAPT-23-2-A).

I am completing a dissertation on “How HR Can Create Psychological Safety in the Workplace for Employees Living with Invisible Disabilities.”

For ease of reference, I have used the term invisible disabilities having regard to the Irish legislative description of disability. However, I am aware that some people living with these invisible disabilities do not see themselves as having a disability. The term invisible disabilities, for purposes of my dissertation, is an umbrella term used for many illnesses including but not exclusive to Diabetes, Depression, Neurodivergence, Multiple Sclerosis, Hearing Loss, Cancer, Blindness, Chronic Pain, COPD, fibromyalgia etc. I have a personal interest in this subject as I live with Type 1 Diabetes.

As part of this research, I want to ascertain what experiences others have had in the workplace and what has increased their psychological safety to give them the confidence to disclose their invisible disability or what has made them cautious in disclosing their invisible disability.

Participants will be required to attend an interview for approximately an hour via zoom.

Purpose of the Research

The purpose of this research is to ascertain whether HR has a role in creating psychological safety for employees living with invisible disabilities in their places of work.

What the Research will involve?

The research will involve interviewing participants living with invisible disabilities. The participants will be asked a series of questions including details on their employment, the industry they work in, whether they have disclosed the nature of their invisible disability to their line managers and if so, their experience and if not so, why not.

Participant Selection

I have chosen employees living with invisible disabilities as it is a group that can be overlooked as many employees living with invisible disabilities report facing discrimination or receiving little or no access to support in the workplace. With a global skills shortage, CIPD (2023) reported that only half of UK citizens of working age living with a disability are employed.  To meet the demands of this global skills shortage I wanted to ascertain what was the experience of employees living with invisible disabilities. The research seeks to understand what HR can do to create psychological safety for employees living with invisible disabilities to disclose the nature of their disability.

Voluntary Participation

Participation in this study is completely voluntary. There is no obligation to participate in this study. All information provided to the researcher will be confidential and the anonymity of all participants will be protected throughout the study.

All participants have the right to withdraw from the study at any time prior to submission of the data. Once the data is submitted, it will be collated with all other participants’ data and can no longer be retracted. Participants have the right to refuse to participate, refuse to answer any question and to withdraw up to the point of data analysis on 20th June 2024 without any consequence. If a participant chooses to withdraw at some point there is no need or requirement to provide a reason. Simply send an email to me, aoife.turner@mycit.ie stating that they wish to withdraw from my MA research study.

I am genuinely interested in the participant’s actual experiences and look forward to hearing about their experiences, both positive and negative, in the workplace. All participants’ experiences are welcome and valid and all participants should strive to be completely open and honest during the interview session.

Confidentiality

The session will be recorded and transcribed. Therefore, the primary foreseeable risk associated with this research is related to personal data. To manage this risk, the recording will be stored on my personal laptop which only I have access to. Transcripts of the interview will be available to my Research Supervisor and External Examiners if required. The recording of the interview will be transcribed and during the transcription process all identifying data will be redacted from the transcript. Once an accurate pseudo-anonymous transcript has been generated the original recordings will be deleted. It is normally expected that the original recordings will be deleted within a week. The signed Consent Form will be stored in a separate folder on my laptop and password protected. All emails from you relating to this research project will be deleted.

I hope this clarifies matters for you. Please feel free to contact me should you have any further queries.

Contact: aoife.turner@mycit.ie


COPD Research Study – Suraj Govindaraju – BioInnovate Ireland Fellow, NUI Galway 2023-2024

30/04/24

I am  Suraj, and I am a research student at the University of Galway, Ireland, under the BioInnovate program. My area of research is COPD.

The aim of the program is to find unmet clinical needs of patients, and to find ways of solving them.

I was hoping to get patient’s perspective of COPD and understand the problems and frustrations they have to deal with on a day to day basis.

My questions to people living with COPD will be related to COPD and its lived experience, with the aim of finding the most pressing needs of these patients, to develop solutions for them.

I wish to declare that I will not be collecting any personal information from these patients, such as their names etc.  I am only interested in getting their perspective on COPD, how they live with it, and how to make their lives better.

If you are interested in participating in this study please contact Suraj directly on:

T: +353-0830822986

E: S.Govindaraju1@universityofgalway.ie

E: suraj.govindaraju@bioinnovate.ie


05/03/24
Research study run by Dr Clara H. Heinrich from the School of Pharmacy in University College Cork and the Department of Health into peoples experience of antimicrobial resistance, sepsis and/or infection prevention and control procedures within the public healthcare setting between 2018 and 2022.

All information relating to this study is available in the flyers below.

Recruitment Patient pamphlet 2 pg


Trinity Academy Research project

01/02/24

The Trinity Academy language – Dublin Language Academy is conducting a research project that is aimed at determining how shortness of breath and coughs and the severity of these affect the lifestyle of people with any respiratory condition
For Ireland, we need to determine if the language and wording is clear for people with the condition who live in Ireland.
In essence, we need to determine that, after translation, the questionnaire (to be later used in clinical settings) would be clear to native speakers and is culturally correct.

The research consists of a phone interview to test the language of any condition which causes dyspnea (breathlessness) or coughing.
This will be part of clinical research on these types of conditions.
We are looking for 3 people who would like to partake.
This will be a phone questionnaire; there are no right or wrong answers, we just need the opinions and understanding of people who suffer from breathlessness or coughing on a regular basis. Respondents need to be first language English speakers and Irish nationals for cultural and reference reasons.
Our age range is from 18+
If anyone would like to partake, they have a €30 digital voucher or a donation to a charity or fundraiser if they prefer.

Please note we are not assessing the condition of the interviewee but would like to know how people who suffer from breathlessness or coughs interpret the wording. -is it clear to them, would they change anything? There are no right or wrong answers, just opinions on the wording and language.

If you would like to take part in the research, then please contact directly :

Siobhan Kelly M.A (TCD) M.A.(Coventry)

Managing Director
The Trinity Academy
92, Lwr. George’s St,
Dun Laoghaire,
Co. Dublin  

skelly@trinityacademy.ie

www.trinityacademy.ie

t: 01 254 4452


Exploring swallowing difficulties among adults with chronic obstructive pulmonary disease in the community – a cross sectional national survey

Undertaken by: Maura Flinn, an undergraduate student in Clinical Speech and Language Studies, Trinity College Dublin (TCD).
09/10/23

The aim of this project is to explore swallowing difficulties of adults with chronic obstructive pulmonary disease living in the community. It will examine what level, if any, of swallowing difficulties they experience. In addition, it will aim to identify subgroups experiencing high levels of swallowing difficulties by examining comorbidity. 

This project requires the completion of an online survey, which should take approximately 10 minutes or less. The results of this research should provide valuable information to COPD Support Ireland.

The survey is anonymous, and participation is completely voluntary. This research has ethical approval from the School of Linguistic Speech and Communication Sciences, Trinity College Dublin (TCD). 

The survey will be open for six weeks.

Please see the survey link below:

https://qfreeaccountssjc1.az1.qualtrics.com/jfe/form/SV_0eo02JfVkqy4Lye

If you have any further queries about this study, you may contact me (Maura) via email (flinnm@tcd.ie) or my research supervisor Professor Dr Julie Regan (juregan@tcd.ie) for further information.  


Vitalograph Study

12/09/23

I work at Vitalograph – you may know about us already. We are known for our respiratory diagnostics and clinical trials solutions, and somewhat synonymous with spirometry. I am getting in touch to tell you about an exciting new study we are organising.

DLCO is a measurement to assess the lungs’ ability to transfer gas from inspired air to the bloodstream. It can help detect lung disease severity.  We are very excited to be at a stage where we can test our software capability along with our FDA / CE approved VitaloLAB device – a PFT lab solution.

We are seeking 10-12 individuals with Asthma or COPD  (a split of male/female, old/young) who would be willing to participate in this study.

The data from this cohort of people will be very useful in testing our software algorithm.

The results are likely to feature in a test report and patient data will be anonymised for privacy reasons.

Each person would need to allow around an hour for a test session at Vitalograph here in Ennis. Individual appointments would be staggered across several weeks. Rest assured we uphold the strictest of hygiene standards.

Each participant will be remunerated for their time.

If you are interested in participating please contact direectly:

Meadhbh Hendrie​​​​
Senior Marketing Executive
Tel:  +353-65-6864029
Web: vitalograph.com


Mobilise-D Delphi Survey

30/05/23

My name is Alison Keogh. I am a researcher based in Trinity College Dublin and linked with the Insight Centre in UCD. I am writing to you on behalf of the Mobilise-D research team - https://www.mobilise-d.eu
Mobilise-D is a large European project that is looking to develop new outcome measures of walking, in a real world environment for people with chronic conditions, including COPD. We have an active patient and public involvement structure which I am leading. One of the topics we are currently working on, is understanding how people want their walking data over time to be visualised back to them. Specifically, what kind of information is meaningful to them.

As a result, we are conducting an online Delphi study (a short round-based survey) focused on understanding the importance of information gathered from wearable sensor devices in relation to the walking patterns of individuals living with multiple sclerosis, Parkinson’s disease, hip fracture, or chronic obstructive pulmonary disease. This study was co-designed alongside our patient advisors.

The survey consists of three rounds spread over 3-6 months, will take approximately 20-30 minutes for each round and the patients are seen as the experts in this process, guiding us to create tailored solutions to all points raised.

Please see the link to the registration page: https://forms.office.com/e/9gbN1YtytZ

Should you have any questions or require further information, please do not hesitate to contact me about it.

Alison Keogh
alison.keogh@insight-centre.org


HSE/SETU Research Study

26/04/23

HSE and SETU are exploring ways to help people be more Physically Active, and you are invited to take part. Aged between 35-60? Resident in ROI? Living with COPD? Please speak to us.

Simply click on this link to get involved

https://forms.office.com/e/dj7RMAkrb0


The experiences of informal caregivers and their-care recipients with COPD (Chronic Obstructive Pulmonary Disease).

28/03/23

My Name is Jennifer Dean – King and I am a mature post-graduate researcher in the Department of Psychology in Maynooth University working under the supervision of Dr Rebecca Maguire. I am now commencing a qualitative study on the experience of informal caregivers and their care-recipients with COPD. I am particularly interested in interviewing both caregivers and care-recipients on the experiences of their daily life currently and also before and during the pandemic. It is intended that the interviews would also consider what would be helpful in terms of guidelines or a framework that could be used to support them in their daily life.  The research will consist of interviews that would be between 30 to 60 minutes in duration and could be either online or face to face depending on the participants’ preference.

If you are eligible and interested in participating, please contact me directly at : jennifer.deaneking.2018@mumail.ie


the FlexiFITT App Survey by DCU students

22/11/22

Myself and a group of 5 other final year Sport Science and Health Students in DCU are currently completing a business module that requires us to come up with a business plan. We have decided on the idea of a mobile fitness app that caters for the individual needs/goals of people with chronic conditions. We think that it is extremely important that individuals with these conditions have the opportunity to exercise independently and this app aims to facilitate this. We were wondering if it would be possible to have people involved with your organisation fill out a survey so that we can tailor the app to specific needs and wants. If you would be interested in helping us out with this I have attached the survey below.

https://docs.google.com/forms/d/e/1FAIpQLSd3tzQt2LpO0oLHb6-MFPsaOMZ7aL5D1xJKgPERem6V0_znpA/viewform?usp=sf_link

Any help would be greatly appreciated.

Many thanks,

Holly Graham


You are invited to take part in a research study called SEURO (Scaling EUROpean citizen driven transferable and transformative digital health), which is being carried out by researchers from NetwellCASALA, at Dundalk Institute of Technology, and Trinity College Dublin.

19/09/22

This study is taking place to find out if new technology can help people living with more than one chronic health condition to manage their health and well-being, and to receive improved care.

Participants will be randomly assigned to one of three groups. Two of the groups will receive and use variations of the technology in their homes; the remaining group will continue to receive their existing care. The objective is to examine the effectiveness of the technology, and to receive feedback that can help to improve it. 

Who is organising and funding this study?

This study is being carried out by researchers at Dundalk Institute of Technology and Trinity College Dublin. The funding has been provided by the European Union, under a programme of research called Horizon 2020. 

Who can take part?

People aged 65 and older with two of the more following conditions: 

  • Diabetes
  • Chronic Obstructive Pulmonary Disease (COPD), Emphysema, Chronic Bronchitis, or Chronic Asthma
  • Chronic Heart Disease, Coronary Artery Disease, or Cardiovascular Disease (e.g., Hypertension, Atherosclerosis, Angina, or Arrhythmia)
  • Congestive Heart Failure

What next?

  • If you are interested in taking part, we will provide you with more detailed information materials and will fully explain all aspects of the study. We will do this before we ask you to consent to participate. 
  • Participation is completely voluntary. You can choose not to take part or to withdraw from the study at any time with no negative consequences for you.

Where can I get more information?

If you are interested in taking part in this study or would like more information, you can contact our researchers:

Sarah Tighe or Séamus Harvey, Dundalk Institute of Technology

Jane Murphy, Trinity College Dublin

Phone: 042 937 0296

Email: seuro@dkit.ie or seuro@tcd.ie

Website: www.seuro2020.eu 


Living with COPD in the community during the Covid-19 pandemic: an exploration of patients’ perspectives.

16/06/22

Researchers from Trinity College Dublin and associated healthcare providers wish to interview people who are living with COPD and their experiences of living at home in the community during the Covid-19 pandemic. 

The study involves taking part in a 30-to-45-minute telephone interview with a member of the research team. Your interview responses will be anonymised and kept strictly confidential.

 Inclusion criteria:

  • People aged over 18 years of age
  • Diagnosed with COPD for at least 18 months or more before the date of the interview.
  • Living at home in the community during the Covid-19 pandemic
  • Able to speak English (because it is not possible to facilitate an interpreter)

This study has received ethical approval from the TCD Faculty of Health Sciences Ethics Committee on 09th June 2022. COPD Support Ireland are supporting this study.

What should I do if I would like to participate?

Go to https://www.tcd.ie/tcphi/research-collaboration/copd-study/index.php or contact Dr Éadaoin Butler by email (BUTLERAD@tcd.ie) to discuss the study and be sent a copy of the Participant Information Leaflet.


Physical Activity Study – Lorraine Tompkins TCD

14/06/22

Physical activity is critically important for the prevention and management of chronic conditions.  As older adults age, physical activity levels tend to decrease, and time spent in sedentary behaviour tends to increase.  The importance of understanding what influences physical activity behaviour is key to modifying behaviour and to promoting physical activity. Improving motivation for physical activity is important for increasing physical activity among people who are physically inactive or spend a vast amount of time sedentary.  This study is taking place to explore older adults motivation to be physically active, who they are physically active with or alone and where they are physically active such as indoors or outdoors to help understand their physical activity behaviour.  The study also aims to understand the best time of day to be physically active.  Older adults with two or more chronic conditions (diabetes, cardiovascular disease and/or respiratory disease) may sometimes find it difficult to be physically active and may not feel motivated to do some type of physical activity.   Collecting your data in real time will give a better understanding of what influences your physical activity behaviour. This study aims to use an activity tracker ActivPAL and electronic questionnaire via application using your android smartphone to understand older adults with two or more chronic conditions physical activity behaviour.  To the best of my knowledge this type of research has not been conducted in Ireland or with older adults with multiple chronic conditions.

 

For further information on the study please contact Lorraine Tompkins directly on tompkilo@tcd.ie or phone: 085 2839762


Participants’ views on online exercise classes during the Covid-19 Pandemic

26/05/22

You are invited to take part in a research study that aims to determine the views of Irish Physiotherapists and patients towards physiotherapy-led online exercise classes. This survey is being undertaken by Eimear Cronin, a senior Physiotherapist at St. John’s Hospital in Sligo and a PhD candidate at Atlantic Technological University, Sligo under the supervision of Dr Ken Monaghan.

If you are an adult who has participated in a physiotherapy-led online exercise class and is interested in taking part in this study, would you kindly click on this link to complete an anonymous survey:

https://qfreeaccountssjc1.az1.qualtrics.com/jfe/form/SV_5tXPGL3Zevn1lSS

This survey will take only 5 minutes to complete.

Should you have any questions or would like more information in relation to this study, please feel free to contact Eimear at eimearpcronin@gmail.com


Understanding unmet needs today and in the future for strategic development guidance, respiratory patient perspective

26/01/22

EFA – European Federation of Allergy and Airways Diseases Patients’ Associations in association with one of their corporate partners, Roche, is  doing some research and they are interested  in interviewing patient leaders on future unmet needs on asthma / COPD / respiratory (depending on your expertise) especially when it comes to treatments.  The study is described below:

In the interviews we are planning to run in the next several days, we are looking for candidates who could help us understand how future patient unmet needs will evolve over the next 5-10 years, especially thinking about patients’ expectations from drugs or how they want to live their lives better. More specifically, we are planning to ask a number of questions with the key themes below:

  • Unmet needs for asthma/COPD Patients now and in 2030
  • Ideal therapeutic & non-therapeutic solutions from the patients’ perspective to address remaining unmet needs
  • Challenges in addressing asthma/COPD Patients unmet needs
  • How Patient – HCP communications influence treatment decisions – what works, what needs to change, what needs to be started?

This will in the end help us identify the areas where Roche can best serve the needs of respiratory patients in the future.

We are currently partnering with a company called Adeptfield to run the interviews. Their project director, @Deepa Patel (+44 20 3432 8216, deepa.patel@adeptfield.com), will soon reach out to you directly. Ideally we would love to run the interviews before the end of next week but we would love to hear your availability as well.

They offer a honorarium of 220 for the person interviewed, and a donation for the organisation of same amount if appropriate. The interview will be in English.

If you are interested please contact the project director Deepa Patel directly on deepa.patel@adeptfield.com


A request from the School of Medicine in NUIG for people living with Conditions such as COPD to speak with their students in a new teaching initiative

05/01/22

The School of Medicine in NUIG are seeking people living with chronic conditions such as COPD, to speak to their students (virtually via Zoom) about their experience of living with COPD day -to -day and also to speak to their experiences of being admitted to hospital due to their condition (if this has ever happened for them). We believe and train our students to keep patients at the centre of their minds, and the centre of any care decisions so ensuring the voices of those living with chronic conditions is included in their learning is very important.

We have completed some similar work in the last 6 months with participants associated with other charities/community groups and the feedback has been very positive. Please note any individuals that would like to get involved, would be re-imbursed for their time as we recognise that their time and input is valuable.  Ideally we are seeking somebody living with COPD who has required at least 1 hospital admission due to an acute deterioration of their condition e.g., infection, perhaps someone who has engaged with pulmonary rehab/physio programme or who uses home oxygen.

The initiative is purely for online interaction via Zoom so there would be no need to attend NUIG face to face, especially in light of the current national COVID19 situation.

If you are interested in participating please contact directly:

 

Dr. Jennifer Yates, MRCPCH

LAB in Professional Development

School of Medicine, NUIG

E-mail: jennifer.yates@nuigalway.ie