Recruitment and consent of adults with intellectual disabilities in a classic grounded theory research study: ethical and methodological considerations

Abstract Background There is an onus on intellectual disability researchers to provide opportunities for people with intellectual disabilities to be included in research which affects their lives. This paper presents a... [ view full abstract ]

Abstract
Background

There is an onus on intellectual disability researchers to provide opportunities for people with intellectual disabilities to be included in research which affects their lives. This paper presents a report from one research study inclusive of twelve adults with intellectual disabilities which utilized classic grounded theory methodology.

Aim and objectives of the study
The twofold aim of the research study was to explain how adults with intellectual disabilities make choices and exercise autonomy in their lives and to develop a substantive explanatory theory. The aim of this paper is to describe and analyse how twelve adults with intellectual disabilities were recruited and provided informed consent to participate.

Methodology
This study was guided by a critical-realist epistemology and the principles of classic grounded theory as delineated by Dr. Barney Glaser. Ethical approval was granted by the author’s affiliated institution and the local service ethics committee. Data was gathered from a single intellectual disability service in the Republic of Ireland. Participants consisted of twelve adults who were attending day services and accessing a variety of other services within the organization. Data was collected through multiple interviews conducted as chats or meetings, ranging from a few minutes up to one hour and thirty-five minutes, in different settings, and analyzed using the concurrent processes of constant comparative analysis; data collection, theoretical sampling and memo writing.

Findings
The findings of this paper specifically focus on ethical and methodological realities of recruiting and obtaining consent from adults with intellectual disabilities while enlisting a classic grounded theory methodology.

Conclusions and Implications
This paper adds to understandings of recruitment, informed consent and classic grounded theory methodology in inclusive intellectual disability research, literature from a wider perspective is integrated and recommendations are made.