Informed consent

Gaining and maintaining consent is a central ethical consideration within the research. This is particularly salient when researching populations that can be considered as ‘vulnerable’. Although historically people with learning disabilities, those belonging to the ‘vulnerable’ populations were deemed as incapable of understanding research ethics this placed the process in the hands of the academic ‘expert’ (Nind 2008). Today however due to the 1998 Data Protection Act, informed consent has become a much more widespread concern for research as it “is now a legal requirement as well as a moral obligation” (Scott et al 2006: 275). Legally discussions revolve around three main concerns, competence to give consent, whether the research is in the persons best interest, and the balance with the public interest (Nind 2008, Scott et al 2006). As this research is conducted with school-aged students, the legality of gaining informed consent was my first consideration, nevertheless:

ethical and moral implications are a separate issue from the legal issues, but it would seem reasonable to assume that good research practice would reflect more than the just the basic legal requirements. (Scott et al 2006: 277).

As all the participants were under the age of sixteen and therefore could not legally give consent (Grieg et al 2007 and Tisdall et al 2009) informed consent was first sought and obtained from a person with parental responsibility. To respect and preserve the school’s duty to protect the children’s anonymity and confidentiality (Scott et al 2006) contact with

each child’s person or persons with parental responsibility was always made via the school’s facilitators. I provided the school facilitator with a participant information sheet and an informed consent form (see appendix 2 and 3). This process meant that I had to rely on the school facilitators to choose the students they deemed to be suitable participants and had to rely on them to send out the materials and then collect the returned forms. Interestingly, Scott et al 2006 stressed that when researching with disabled children they discovered that “it was more effective for the consent forms to be returned to the school, rather than directly

to the research team, as it gave a greater return rate” (p.281). This process therefore may

have aided the participation rate for the research.

Although informed consent was first sought from a person with parental responsibility, I ensured that the consent process throughout the data collection procedure involved many separate, interrelated levels of consent and various processes were employed. This was due to my belief that it is imperative to ensure that the consent process is ongoing, and it is not something that is only obtained during initial contact (Cameron and Murphy 2007). Gaining informed consent from the person with parental responsibility was only the first

consideration. Once informed consent had been obtained from those with parental

responsibility, I liaised again with the school facilitators and arranged to meet the students to begin the data collection process. Greig et al (2007) argue:

the child, as well as the parent, must be aware of the implications of the research, and the child if able should give assent in addition to the consent of the adult with parental responsibility… in other words that they are true volunteers (p.174)

I, therefore, began each data-gathering session by asking each student for their assent (Beresfold et al 2004) before I continued working with them.

4.4.3.1 The process of gaining participant assent

The ongoing process of participant assent (Beresfold et al 2004) used throughout this

research was viewed as a fundamental ethical principle to ensure the students felt in control and included in the process as much as possible. The term “assent refers to the child’s

agreement to participation in the process when another has given consent” (Lewis 2002:

111). In social research “children are now being given due consideration as active rather

than passive research participants and therefore are being better protected” (Scott et al

2006: 285).

It can be argued however that “being asked to assent…offers only an alternative choice of refusal, and therefore it is not the same as choosing that action freely” (Pilnick 2008: 522). In the case of this research, assent was only sought-after informed consent was given via a person with parental responsibility. One student assented to participate in the research but declined to be video recorded. This demonstrates that the student was not only informed but had more options than simply the choice of refusal.

At the beginning of each data-gathering session, I gave the student an assent form

(appendix 4) and began discussing the research as it has been stressed that all “children will

normally require an oral explanation expressed in a manner that communicates effectively”

(Hartas 2010: 119) before continuing with the interview. I began by explaining to the

students that even though they have been asked to come here today if they want to stop at any time they could. I then continued through the questions on the assent form. I have included an example of a student’s response to question three that asks, what would you

say to me if you want to stop? One of the students responded by saying “No.” I concluded

the discussion of the assent form by explaining again that if you want to stop, or if you don’t want to answer a question or talk about something just say “no” and we’ll stop. As I was working with students aged between seven and sixteen, I also provided them with a symbol they could give me if they wanted to stop (appendix 5). The symbol was on a piece of paper that I gave to the student with the explanation that if they wanted to stop at any time, they could hand this to me, and the interview would conclude. I continued to check if the

students were comfortable with continuing throughout.

As this research recognises that the students involved may be considered as vulnerable, it was vital to document data relating to consent and participation (Cameron and Murphy 2007). Data such as the example above where a student refused to be video recorded

suggests that consent procedures worked as intended as the student understood the information and the procedures involved. It has been suggested however that “for consent

to be working there must also be evidence that potential participants chose not to take part”

(Cameron and Murphy 2007: 116) however as the research students were contacted

through school facilitators as Scott et al (2006) had also discovered “there were no means of

knowing how many, or who, had refused to take part, nor any way of knowing the reasons for non-participation” (p.208). Out of the twenty-one students, five did not participate

further after the first initial interview. I was informed of this via the facilitator, but I was not given any information as to the reasons why. There were also examples of student’s

enjoyment of being involved in the research. Examples of comments were “Can I do more”,

“Can I do another one”, “Can I keep a copy of the Mat that I created”.