GAINING ACCESS TO AND OBTAINING INFORMED CONSENT FROM PARTICIPANTS WITH A LEARNING DISABILITY: THE CHALLENGES FACED BY THE RESEARCHER

by Deirdre Phelan

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Introduction

In this article I discuss the personal challenges I faced in the initial stages of conducting a qualitative research study that explored the formal and informal social support networks of ten mothers with learning disabilities. I hope that it will provide some useful insights for future researchers and service providers in the learning disability field.

Permission for Access

I received a list of suitable organisations to contact from the National Association for the Mental Handicapped (namhi). Through mail correspondence I contacted the chief executive officer at each organisation (fifteen in total), explaining the study and requesting a meeting to discuss possible access to potential participants. Gaining access proved difficult and inconsistent. The majority of organisations failed to return a follow-up voicemail left on their answering machines and therefore appeared unwilling to meet with me to discuss the research further- The general feeling throughout the remaining organisations who did contact me was that research among people with learning disabilities, and the sensitive subject of motherhood within this population, should be avoided owing to their cognitive limitations. This view overlooks evidence that confirms that this population is generally able to give informed consent (McCarthy 1998), if certain conditions can be put in place to ensure that contributions are respected. This view also ignores the very real positive effects that research can offer in informing practice. As Dubler (1985) points out, incompetence in giving consent cannot be assumed because of cognitive limitation. Competency is specific to time, place and situation and one should not talk of competence as a global measure. The reality is not whether a person is competent, but rather if they are competent to take a specific undertaking in context.

The reluctance displayed by many organisations could stem from the fact that allocation of research resources to the disability arena has traditionally been abysmal. However it also appears that these organisations assume on a gate-keeping role with respect to their clients’ involvement in research. This study’s participants displayed much interest and seemed genuinely appreciative that their opinions were being sought. On a positive note, three organisations were genuinely interested in evidence-based practice, and two organisations were able to provide access to participants following ethical approval. Several people from these organisations kept in contact with me offering their support.

Obtaining Consent

In research, the more sensitive the topic, the greater the need for ascertaining genuine informed consent, owing to the personal and potentially intrusive subject matter (Polit and Hungler 1999). Research with participants who, by virtue of intellectual disability and/or a lifetime of compliance, may not be able to give informed consent, is rarely addressed in the literature. Rather it is implied that problems regarding informed consent can all be overcome if handled in a sensitive enough manner. However, researchers (e.g., McCarthy 1998) engaged in research with people with learning disabilities believe that we must recognise that some people may be overly compliant or particularly vulnerable to sensitive issues.

My approach to gaining consent was to make contact on terms that left the initiative with the participant. Once suitable participants were identified, introduction to the study was made through each person’s key-worker (or in two cases a family member) who explained the researcher’s identity, the purpose of the study, and how the information obtained would be used. Each key-worker (or family member) received a letter of introduction to give to each potential participant and was thoroughly briefed on the aims and objectives of the study. The key-worker (or family member) decided when and how best to raise the matter with the potential participant. The voluntary nature of participating was strongly stressed and I received participants’ contact details only after the participants had contacted me by phone expressing their interest in the study. In the process of obtaining consent I met with each potential participant (fifteen in total) at a venue of their choice and I explained that while the study might not affect them directly, it was hoped that it would start a future investigation into the social support needs of Irish mothers with learning disabilities. I also emphasised that they were free to withdraw from the study at any time. This was done because I suspected that participants might feel unable to withdraw consent due to worries of being adversely affected in relation to the disability service to which they were attached. Explained in this way, most of the women were willing to participate. Five participants refused consent, mainly owing to practical reasons; however they requested regular up-dates of the study’s progress. This level of refusal of consent indicated to me that the consent process had been real and effective.

However, while every effort was made to ensure informed consent, the consent process remained potentially flawed, because people with learning disabilities can be overly compliant (McCarthy 1998), and being approached by their key-worker (or family member) may have increased this tendency. There was a lack of researcher control over how the study was presented to the participants, and in two cases I was informed that potential participants had refused to participate, where I strongly suspect that they were never approached. Finally, this approach assumed that potential participants with learning disabilities would understand the research process if they were given a simple description of it. Therefore, in addition to the initial meeting with the researcher, each participant received a written explanation to read with their key-workers as often as they wished. However, for the reasons outlined, and because of literacy difficulties, I cannot categorically state that full informed consent was achieved. It is also doubtful that the participants fully understood the data-analysis process. Participants have control over the release of raw data, but the researcher attaches significance to this data that untrained participants may not fully comprehend. However, many of the issues outlined here are also applicable to the general population, and it is safe to assume that no researcher is fully able to ensure that informed consent has been achieved in its entirety. I was satisfied that the approach I took was as ethically effective as possible.

Although ethical guidelines regarding research with people with learning disabilities are a topical issue at present, and are being developed nationally, I found that their implementation is insufficient. The majority of organisations that I contacted have no established research unit and they appear to deal with research matters on an ad-hoc basis. While ethical behaviour is not simply a question of following a set of principles that can be unequivocally applied in any situation, they do provide a starting point for researchers. I strongly recommend that they are developed and fully implemented in the Irish context. Ethical guidelines are developed over time through various means. One approach is to consider moral choices at an abstract level in ethical theorising, these can be derived from codes of behaviour established by ethical institutions and from the observation in practice of what happens when research is conducted in incorrect ways—as well as observing the benefits from doing the research in right ways (McColgan 2003). Therefore, theorising about ethics can never be detached from the application of principles in practice.

The power of the gatekeepers

Potential participants for this study had no involvement in the decision-making process with regards to access, owing to the power of the gate-keeper organisations. As pointed out, following negotiations with open minded gate-keepers, the majority of mothers who were approached were enthusiastic. However, the majority of the gate-keepers initially approached were either disinterested or sceptical. This presumed ownership of sole access rights to a group of people exemplifies disempowerment and infringement of individual rights in the extreme. My view, however, was that the service users had the greatest entitlement to expect to be consulted about this study. Irish voluntary organisations have retained their significant autonomy in service growth and provision. In my own experience of working within this sector I believe that this may have led to each organisation having developed a distinguishing pattern of culture and sub-culture. Wall and Owen (2002) describe culture as something of a rag-bag, a collection of ideas, norms and assumptions, but it matters because it affects behaviour, and gives rise to a certain consistency and coherence in values and attitudes. I suggest that for the development of real and sincere ethical guidelines in Ireland, greater communication with the real experts, service users, and an attitude change is required of the very people who purport to promote the interest of people with learning disabilities.

Conclusion

My experience as a novice researcher in the learning disability field highlights areas and issues that I and others within this sector need to address. As health professionals, we are in a privileged position because we act as advocates for people with learning disabilities. My hope is that we can do this to our fullest potential by examining our practice, and recognising that the voices of people with learning disabilities need to be respected and heard loud and clear. To all the participants who shared their experiences and insights with me, even when at times this proved difficult and painful, I offer all my humble appreciation and admiration.