8.2.3. Data collection in communities
The study aimed to capture the experiences of Indigenous people with MHDCD who have been enmeshed in the criminal justice system to gather information about their experiences of the criminal justice system as persons with an intellectual disability, cognitive disability and/or mental health disorder, and what the experiences meant for them while in the criminal justice system and in their Community.
A further aim was to capture the experiences of family members, and their perception of program interventions, as well as Community understandings of MHDCD, the impact of the CJS with respect to MHDCD, and their views on services for people with MHDCD. In addition data was sought on how Indigenous persons understand and identify mental health disorders and cognitive disabilities in their community, and especially in regard to MHDCD in the CJS. The views of those who provide services to persons with MHDCD who have been in the CJS were also sought.
A number of steps were undertaken to ensure a comprehensive culturally and disability informed approach was used. These steps involved: careful preparation prior to entering the communities; identification of stakeholders who would take part in the interviews; development of rigorous protocols for recruitment and informed consent; and the development of research instruments that were comprehensive while at the same time sensitive to the needs of participants.
Preparation of Site Summaries
Once the relevant Aboriginal Community Controlled Organisation in each community provided formal written support after consideration by their Board or senior management, Project personnel prepared a summary for each research site to ensure that Researchers were well informed about the context of each unique community. Site summaries included:
- Context – demographic, geographic, historic
- Service detail
- Interviewees
- Stakeholder group
- Types of service providers
- Aboriginality of service provider interviewees
- Sectoral spread of service providers
Recruitment
Recruitment of participants into the study involved a collaborative approach with Aboriginal Community Controlled Organisations to engage potential participants. Recruitment of participants was undertaken through the workers based in the supporting AMS or other community-based organisation and via an IAMHDCD study poster developed to promote the research and attract participants. Community-based frontline workers identified people in the community with MHDCD who have experienced the CJS through their work in the community and connections. People who learned about the study through the recruitment poster were invited to leave their details with the supporting community-based worker. Acting as a liaison, the worker then explained the aims of the study to the potential participant and provided them with the details of how to contact the research team, as well as a time and place where the research team would be available to talk with potential participants (drop-in). These locations were selected in consultation with the relevant community-based organisation as a space that is safe and culturally appropriate. The worker was not required to disclose potential or interested participants’ names or contact details to the research team.
Participants with cognitive impairment were encouraged to identify and bring along a support person of their choice to provide assistance in understanding and communicating their views in the interview. In this way the recruitment process ensured cultural safety was established by connecting with potential participants via a trusted organisation and with a trusted supporter as needed.
Informed Consent
A key issue for this aspect of the study was that of ascertaining and gaining informed consent from interview participants. Given the history of research with vulnerable groups, the project’s objectives and theoretical perspective, informed consent was not conceived of as a point in time sign off, but rather as an ongoing process of consultation, consideration and discussion with potential participants with MHDCD. A protocol was developed for use in the field which set out detailed procedures for obtaining informed consent with a particular emphasis on establishing whether an individual was able to provide informed consent themselves and where this was not the case how consent to participate should be obtained. Easy Read versions of the PIS and Consent Form were developed for use with participants with cognitive impairment and/or limited literacy. In addition, an Information and Consent Form was developed for Guardians. The Guardian was able to use the Easy Read version to discuss participation in the study with the person under guardianship. Once the Guardian was confident that the information contained in the Easy Read version was understood by the person, including why questions were being asked of the person and what would happen to the information provided to the researchers, the Guardian was required to give consent for the person to be interviewed. These forms ensured that all reasonable attempts had been made to ensure informed consent had been given. To assist this process, the research team developed a ‘decision-making tree’ set out in Figure 2:
Figure 2: Decision tree: Consent type and interview support
This aide incorporates the many issues that had to be considered when gaining informed consent from participants, particularly from those who didn't have a legal guardian, and whom researchers were concerned may not understand what was being asked of them.
As can be seen from Figure 2 the decision tree process provided checks and balances ensuring many points at which the person themselves, their guardian and/or support person were fully informed and involved in deciding whether to participate and to be well informed of the intention of the interview.
Interviews
In order to collect the views of the range of participants in each site and to capture information and observations about the site in which the interview took place three data collection instruments were developed, including two different schedules for semi-structured interviews designed for different participants and a template through which researchers were able to capture the unique character and issues emerging in each site.
Data Collection Instruments
Data was collected via individual and group interviews and through the compilation of field notes which captured general observations and issues in the research sites.
i) Interview Preamble
Each interview instrument was prefaced with general instructions for the interviewer to ensure a standard approach to interviewing. All interviews were conducted by two Indigenous researchers (a Lawyer and Mental Health Social Worker), one asking the questions and the other scribing. There was one exception to this, when one Indigenous researcher and one non-Indigenous researcher conducted the interview, The interview preamble included information on obtaining informed consent and permission to record, and a brief script to inform the participant/s of what to expect in the interview, the role of each of the researchers present, rules of disclosure and confidentiality for group interviews and expectations of supporters who attended to assist individuals with cognitive impairment or any participants who wished to have a support present. Finally a statement about what would happen after the interview was included to remind participants that feedback would be made available to the community about the research and that it would be used to inform government policy and practice.
- Interview Schedule 1: Indigenous People who have MHDCD and have been in the criminal justice system
This schedule was designed according to the principles of easy English and contained 3 parts to delineate specific areas of questioning: CJS experiences and associated support needs, which captured experiences in the CJS, assistance received and not received and the impact of these; lifecourse experience and associated support needs, which captured experiences in childhood/adolescence and adulthood; and a concluding section for any other questions and closing the interview. Each section contained a topic statement to introduce the area of questioning, question formats and suggested follow-up and prompt questions.
- Interview Schedule 2: Family members, community members and service providers
This schedule contained 3 parts: reflections on experiences and perceptions of family and community people with MHDCD and their interactions with the CJS; support and interventions and their availability and effectiveness; and a concluding section for any other questions and closing the interview. Variations in each of the questions were provided for different stakeholders including family members and carers, community members and service providers.
In addition for each interview an Interview Log was designed to capture key demographic details, any researcher reflections on the interview and issues for follow up. All individual and group interviews were digitally recorded and transcribed verbatim.
- Field Note Template
While much of the formal data collection for the fieldwork took the form of interviews with individuals and groups, a field note template was developed to provide for the systematic capture of other relevant observations or experiences during time in the field. The aim of this was to capture a richer sense of the everyday physical or social context of the field locations, the key agencies and individuals and their inter-relationships in each site and if possible a sense of the meanings that people in the sites attributed to these occurrences and relationships. This form of data contributed to the development of a more dynamic understanding of the context of the site in which the more formal interviews take place.
