I am seeking to explore whether people of working age with invisible illness or chronic condition are included in their church communities in the Church of England. I’m focusing on people with long term chronic conditions that are not immediately obvious, including ME, Long COVID or people are immunocompromised due to chemotherapy treatment. Their church community might include in-person, hybrid and/or online church. I wonder how much do these people feel they really matter and belong?

If you decide to participate, then you will be asked to read through the participant information sheet (or these FAQs) and then go ahead and start the questionnaire by clicking the button on this page.

The first question will ask for your consent. The questionnaire will ask you questions about your experience of church. I recognise that inclusion can be a sensitive topic so you can choose to answer as few or as many as you feel comfortable.

The last question asks if you are interested in the possibility of a follow up interview with me (for up to 12 people). It asks for your contact details if so. This second stage consists of one Zoom interview, which will have a separate information sheet and consent form.

No, participation is completely voluntary. You can withdraw yourself from the study at any time without any negative repercussions by emailing the main researcher penny @ pennypullan.com (remove spaces). You can withdraw your data from the study up until the point it has been anonymised, after this point it will be analysed and written into the research.

No, there are no direct payments or other financial benefits to taking part in the research.

The questions asked can be emotive and there is a possibility that you may find reflecting on your experiences of inclusion (or the lack of it) distressing. I suggest that you might like to arrange someone to talk to to support your participation in this study.

Some participants find that sharing their experiences and, for those who continue to interview, having someone listen to their experience can be beneficial. I hope that results from this study will help churches to better understand how to be truly inclusive for those with invisible illnesses. 

The data will be used anonymously in the MA thesis and could also be included for conferences and in publications. Your data will be stored securely on the laptop of the researcher and in the researcher’s cloud space. Anonymised quotes may be included in the MA thesis with your permission.  If you wish, you can request to see anything published as a result of this study, whether the MA thesis or further publications based on this research.

Penny Pullan, MA candidate at St Hild College, part of YTEP, studying for the Durham University MA in Theology, Mission and Ministry:  penny @ pennypullan.com (remove spaces to email Penny). Penny is a Reader in the Church of England and her husband has suffered from ME for 33 years. The supervisor for this project is Dr Sally Nelson.

There is an open invitation for people who meet the conditions of this study and live in England to apply to join by filling in the questionnaire. Please take part in the questionnaire directly, rather than via a carer.

This study has ethical approval from the ethics committee at YTEP, the Yorkshire Theological Education Partnership. This study will involve asking you for your contact information, religious views, experience of illness and experiences of church. Data will be stored and processed according to GDPR, and destroyed two years after the completion of the study. You are reminded that agreement to participate in the study does not affect your legal rights.

If you have any complaints about the study, please feel free to contact me or my supervisor Dr Sally Nelson sally.nelson @ sthild.org. If you feel unable to contact either of us or are unsatisfied with our response you can contact the Dean of Academic Studies at St Hild, Dr Justin Thacker justin.thacker @ sthild.org (remove spaces to email Sally or Justin)

If you decide you would like to take part, please indicate your consent in the first question of the questionnaire.

All church communities within the CofE are included in this study. The following is a non-exhaustive list of what is included:

Parish churches that exist either as a single parish benefice, parishes that are held in plurality, multi-parish benefices, chapels of ease, and peculiar or proprietary chapels

Bishop’s Mission Orders and other church plants or fresh expressions   

Cathedrals