Thank you.

Try looking at the work of Rohhss Chapman (with Carlisle People First), Val Willams and Jan Walmsley.  They have years on experience of co-researching with people with learning difficulties/disabilities.

On a practical basis, you are probably better approaching your participants as individuals rather than assuming they all have the same cognitive/social impairments (not all women with Turner syndrome even have learning or behavioural difficulties).

Unless you already know the participants well enough to assess their capabilities, it might be an idea to factor in slightly longer interview times.  In terms of adapting interview techniques, sometimes (and I know it's counter-intuitive for qual research) closed questions can be helpful.  Otherwise keep open questions short and simple (which is good practice anyway).  Combining two things can be confusing so asking someone "why did you do x and how did it make you feel" is really confusing.  Make it two distinct questions.  You might find you have to re-frame questions as well.  It might also be worth considering asking respondents if they want a friend or supporter with them.  It can get a bit tricky and there are ethical issues to consider but it can overcome power differentials and help with 'translating'.

Also it's a good idea to follow up interviews to check your data and ensure you have analysed it properly.  I still recall an interview where a participant with communication problems and learning difficulties appeared to be describing horrific physical abuse but it turned out I'd completely misunderstood and he was talking about some medical treatment he had as the result of an accident.

Basically be patient, be open and be encouraging and always double check your own understanding.

Hi. I prepared this piece for an upcoming book.:

Going beyond ethics codes: Some practical suggestions

While we object to the doctrine of vulnerability on several grounds, we can still entertain a number of practical suggestions if there were genuine cases of vulnerability. What is interesting is that these specialized approaches are not different than those applied in normal considerations of ethics in research. The following suggestions will circumvent these imagined problems.

a. Promote the idea among non-research professionals to allow fieldwork and joint action among different professionals in their venue, including the researchers, and to visualize the long-term aspects of the research (Luxardo et al, 2011: 989). Perhaps for too long, professionals see people with vulnerabilities as their exclusive preserve, creating social barriers insofar as research is concerned. At the same time, it is important to recognize that researchers do not over-research a group (Iphofen, 2009: 114);

b. The phrasing of the overall research question and questions within the interview setting is critical when trying to understand the context of vulnerability. Instead of directly asking about violence, the interviewer would let the research participant speak freely, to avoid generating situations of high emotional impact on the research participant (Luxardo et al, 2011: 990). Even after the research has started, Ron Iphofen reminds us that “... the choice of phrasing in interviews and in questionnaires is anything but methodologically and ethically trivial.” (Iphofen, 2009: 110) An inductive approach in interviews generates more insight and allows the interview participant to convey what is meaningful in his or her life. Researchers need to be mindful of the way they phrase our research questions which artificially create a vulnerable person, such as “Why do battered women stay?” rather than “Why do men batter?” Faulty social conceptions of the problem create “vulnerability” (Lee and Renzetti, 1990: 515);

c. Researchers should encourage themselves to engage in participant observation and other, more subtle, nuanced, and suitable methods of data collection (Luxardo et al, 2011: 993). They should revisit the idea of covert research for it has a special place among data-collection strategies while researching sensitive topics, especially in public spaces (Lee and Renzetti: 523). Even when not conducting covert research, researchers will need to take extra care with anonymity, privacy, and confidentiality (Iphofen, 2009: 116). Researchers will need to go at great length to hide the identity of anyone who by physical appearance would be easily spotted in a study, such as, for example, a particularly tall or short soccer player in a particular school district;

c. As “normals,” researchers have cultural blind spots in understanding “vulnerability.” Do not rule out the idea of getting know a vulnerable group long before you start your research, and talk with them, and get to know how they relate to others so as to avoid stereotypes (equivalent to a point made by Iphofen (2009: 114)). “Hanging out” with the people before formally starting the research is one way to become aware of the social and cultural baggage researchers bring into their research, whether they deal with prejudices or uncovering our taken-for-granted knowledge about genuinely vulnerable groups. Increasing these opportunities for “reflexive and dialogic research” with research participants bring out “interesting complexities in the understanding and application of standard ethical approaches” (Cloke et al, 2000: 150). And as Helgeland (2005: 554) avows,

Discursive ethics assumes a different perspective. Conflicts are solved through dialogic processes between implicated parties.... It is only through dialogues between participants that agreement may be reached.

It might be useful to organize community advisory boards comprised of vulnerable groups to consider, plan, or veto research (in the event “that it might compromise the safety of group members” (DePalma, 2010: 95). As researchers, we should resist the “assumption of homogeneity” (Iphofen, 2009: 109) but anticipate to see diversity in any group we study (Iphofen, 2009: 114). Disability awareness training might be useful in avoiding insensitivities (Iphofen, 2009: 115), but associating with people with disabilities before starting the research is key;

d. Many agencies have explicitly recognized that written informed consent may not always be appropriate. The standard consent process is transactional at a moment in time, and research “subjects” agree to participate only after being appraised of the predetermined and fixed “treatment” they will undergo. Researchers in the social sciences have a different vision altogether. They value “an ongoing, negotiated, and collaborative relationship between researchers and community partners who codevelop the inquiry goals and process—and who may be both researcher and research subject.” Additionally, the emergent nature of the research process may make it impossible in some cases to delineate at the outset the experiences a research participant might have (Newman and Glass, 2014: 287). The Council’s draft guidance for social science researchers acknowledged “that certain groups may be more vulnerable to harm from having information they provided be linked to them (illegal immigrants, victims of home violence, prostitutes, HIV-positive employees, etc). In these cases, standard procedures for obtaining written informed consent may be harmful to the subjects instead of offering protection and therefore need to be replaced …” (European Research Council, 2010, p. 10). Obtaining written, informed consent is a bedrock medical ethical requirement. In this connection, a researcher can develop an “Information Sheet,” rather than a “signed consent form.” Fit the information sheet/consent form according to the needs of the research participant, whether to create a text in large font or Braille,? (Iphofen, 2009: 113). Regarding the participation of “captive” populations, i.e. populations who have been instructed by their supervisors, without exception, to participate in the research, we as researchers can privately tell these research participants that they do not have to participate in the research (see, e.g., Iphofen, 2009: 119). Researchers need to be aware of gatekeepers and proxies (Iphofen, 2009: 116) who often “take charge” of people with vulnerabilities.

Thanks Liz. I want to use photo elicitation as a way of easing women into the research topic (infertility - highly sensitive) during the session itself and going on to a more trad interview process if necessary after we'd talked through the pics. TS itself isn't a disability although some of the accompanying conditions might be. It is difficult to know what individuals might need without knowing them, given it's a spectrum, although it's possible to predict the range of possibilities from the type of issues that are usually associated. This of course assumes that there are no other issues present which are unrelated to TS - there might be!

What is odd to me is that there's a body of education/psychology research on cognitive difficulties associated with TS, but the accommodations that you'd expect to go hand in hand with this aren't mentioned elsewhere in the literature I've read so far. I don't understand that.

Thanks for your recommendations and comments - very helpful and much appreciated.

You are welcome!  

Could you send out some info to the women beforehand and include a short form which asks them if they have any support or access needs and have a list which includes things like 'have a supporter present', 'easy-read information', 'spoken word information' as well as the usual physical access stuff around lift access, parking, lighting etc. That could give you a bit of a steer as to any cognitive issues.

I also think given you are going to be talking about something as sensitive as reproduction (and have you seen Kirsty Liddiard's stuff? might be relevant) it would be really helpful to actually meet up at least once beforehand.  I'm making a wild guess that this is a PhD project which means you probably have supervisors on your back to get you to keep to timetables, but time spent on groundwork laid now will help mitigate the potential for things to go tits up (I think that's the correct academic term) later.

Useful input from Liz and from Will. Adding to their insights: You'll find it useful to correlate answers with actual function. In 40 years experience with those labelled with 'mild cognitive impairment' the most valid discriminator has been that of comparing  the clients own functional behaviour rating with that of actual behavour AND the ratings of two people who have daily contact with them. The logic is this - Since verbalizations are deeply habituated (often reflecting past more than present), if a person is unable to validly rate -or carry out- simple behaviour, their interview answers need close scrutiny. For instance: 60 y o man applying for early discharge from hospital against medical advice charged his nurses with abuse. During interview, he made a clear, forceful case for his ability to care for himself in his rural home, and described the way his nurses and Social Worker failed to provide reasonable help needed due to his new wheelchair-bound status. As a functional assessment, I gave him the task of leaving leaving the hospital w/o depending on his present staff, and asked him how he would make such arrangements. After he described reasonable steps, I left him to carry out those steps, promising to return to help him pack. Staff were informed of this development, and promised cooperation & encouragement w/o doing any of those steps for him. Three hours later, this man had failed to carry out even the first step.  Further assessment, spurred by this functional rift, made clear that he was deeply incompetent.

Good fortune to your research, Kristine,

Psychologist Paul McGaffey

Will. thanks for your thought-provoking and helpful comment and the references.

It is interesting, the presumption that people who have a disability of some kind are automatically vulnerable, particularly as in ethics guidelines it often isn’t explained what it is about having a disability might make someone vulnerable. Does it depend on the type of disability? How does that interact with the individual’s own situation: ie their experience of having that disability or the way they manage it could vary? It is interesting to think about.

Liz, yes, I am planning for my screening questionnaire to include questions about adaptions. Although I’m a bit concerned that giving participants too many options might present problems for people with executive function difficulties, who find it hard to make decisions, so it would be good if I could take on some of that myself where possible. Some of this will get untangled by piloting it.

This is a PhD project but I’m a mature student; I’ve volunteered in the fertility field for a while and have conducted related research before. I also used to be an accessibility tester/auditor and, while I haven’t worked directly with people with disabilities very often, I understand how adaptions can be put in place. It’s more about which ones to use and in which circumstances.

 I’ve also spoken to the TS charity and a couple of TS doctors and got the impression that I was being overly cautious in going to lengths to make my research methods accessible. If the participant group and the charity that represents them doesn’t consider themselves to have a disability then who am I, etc etc. However on the other side, there is the research evidence. My participants will be women who are looking at egg donation or adoption as a method of family-building (and most will have partners) so (from my perspective) the issue is not one of capacity, it’s about creating an environment where they feel able to say what they want to say in the way that works best for them and causes the least possible stress. Hence I’m tweaking a standard method rather than going for a participative approach.

I hadn’t heard of Kirsty Liddiard so thanks for that tip.

And Paul, thank you for your thoughtful comment.