| Collection period: |
| Date from: | Date to: |
|---|
| 1 February 2012 | 1 December 2013 |
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| Country: |
United Kingdom |
| Data collection method: |
The research study ‘Endometriosis: Improving the well-being of couples’ (the Endopart study) was designed to explore the impact of endometriosis (a chronic, gynecological condition) on couples and to contribute to improving the well-being of people living with endometriosis by providing an evidence base for improving couple support. Twenty two couples, in which the female partner had a diagnosis of endometriosis, were recruited to take part in in-depth, face to face, semi-structured interviews. Female and male partners were interviewed separately (n=44). Participants were recruited via Endometriosis UK and other support/information groups/organisations, clinics and word of mouth. We aimed to recruit a diverse sample of participants of varying age and relationship/illness circumstances, and purposively recruited a sub sample of South Asian participants. 44 audio files, and subsequently interview transcripts, were created. |
| Observation unit: |
Household, Individual |
| Kind of data: |
Text |
| Type of data: |
Qualitative and mixed methods data |
| Resource language: |
English |
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| Data sourcing, processing and preparation: |
Guidance on archiving the data collected with the UK Data Service suggests that a) special attention needs to be given to relational data and b) that it is the grant holder’s responsibility to fully consider ethical issues within the process of data archiving. In light of this we have been granted a waiver to archive the interview data we for the reasons given below.
In setting up the study and devising project documentation, the team did pay due diligence to the issues of gaining informed consent and anonymising data. However, as there is very little literature on partners’ experiences of endometriosis and its impact on couples, it was not possible to fully anticipate how highly sensitive some of the data would be. For example, participants disclosed secrets they kept from each other, strategies they used to conceal issues and information from each other, suicidal feelings, serious complaints they had about their partner, considerations about ending the relationship, etc. Although key procedural matters were considered at study initiation and throughout, serious concerns about the ethics of archiving the data remained. Specifically, we had four areas of concern.
Firstly, we have an ethical duty to ensure that, as far as possible, data are used and reported in a way that prevents one partner from identifying what the other said. This is especially important with regard to the highlight sensitive data disclosed (e.g. secret keeping, considerations about ending the relationship, etc.). As the data were highly sensitive at the couple level, archiving the data would compromise this ethical duty.
Secondly, although participants gave consent for their own interview data to be archived, they did not consent to their partner’s interview data to be archived. However, each participant’s interview inevitably contains data about their partner’s experiences, behaviours and perceived feelings (as well as their partner’s families, friends, employers, etc.). Therefore, if transcripts were archived, these would include data about an individual without that individual herself/himself having consented to this.
Thirdly, we have an ethical duty to ensure that data are presented in a way that prevents people outside the relationship from identifying participants. This would mean considerable redaction and anonymisation of the data before archiving, thus significantly compromising the usefulness of the data.
Finally, participants were given detailed information about how the data would be used within the Endopart study itself and by the Endopart study team who were named in documentation. Inevitably they were not given the same detailed information about how other researchers may use their archived data, and so while they consented broadly to the principle of this, they were not fully informed about the specific procedures other researchers may employ. They were also (again inevitably) not informed of the names of other researchers who may have access to archived data. Therefore, there is no guarantee that other researchers would not be able to identify participants, especially if participants are known to them personally, and this is especially pertinent given that six of the participants work in academia and/or research.
Overall, while we believe that there are no legal issues regarding archiving the data, serious ethical concerns regarding this highly sensitive, dyadic data remain which could not have been fully predicted from the outset. We believe that issues of avoiding harm and distress (which in this case goes beyond personal distress and could include relationship breakdown) are paramount and that data archiving would pose serious risks, given the specific nature of the study and the highly sensitive dyadic data collected.
For more information on the primary data please contact the study's Pi
|
| Rights owners: |
| Name |
Affiliation |
ORCID (as URL) |
| Culley Lorraine |
De Montfort University |
|
|
| Contact: |
| Name | Email | Affiliation | ORCID (as URL) |
|---|
| Culley, Lorraine | lac@dmu.ac.uk | De Montfort University | Unspecified |
|
| Notes on access: |
The Data Collection is available for download to users registered with the UK Data Service. All requests are subject to the permission of the data owner or his/her nominee. Please email the contact person for this data collections to request permission to access the data, explaining your reason for wanting access to do the data. Once permission is obtained, please forward this to the ReShare administrator
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| Publisher: |
Economic and Social Research Council
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| Last modified: |
13 Jul 2017 13:57
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