1. Overview of Methodology
The goal of this project was to capture the experience of what it is like to be ‘working within’ a supported decision-making regime in Canada. In order to capture a picture of how the regimes function on the ground, it was necessary to go beyond mere doctrinal analysis of legislation and engage in a more dynamic research methodology to extract information not readily apparent through doctrinal means. Thus, in order to get a more accurate snapshot of how supported decision-making regimes work, researchers adopted a mixed methodological approach. Researchers employed the following research methods:
- Semi-structured interviews with expert interviewees (n=20) with at least 3 informants from each of Manitoba, Saskatchewan, Alberta, British Columbia and the Yukon (the “expert interviews”)
- A series of interviews with adults (n=10) who have been directly engaged with supported decision-making in British Columbia, including both adults with some capacity challenges and people acting as their legal decision-making supporters (the “British Columbia experiential interviews”)
- A brief secondary anonymous survey to expert informants for any additional information or quotes, forming a separate document (the “follow-up survey”)
- Doctrinal legislative research (the “legislative research”)
The research that led to the choice of these particular methodologies is explored below.
2. Interviews with Individuals with Professional Experience with Supported Decision-making—the Expert Interviews
a. Background Research into Methodology
A confidential semi-structured interview process was selected for expert interviews in the five designated jurisdictions. This section discusses the methodology for expert interviews with particular attention to study design and relevant research.
i. Semi-structured Interview: Strengths, Weaknesses and Challenges of this Approach
Several different methodologies were considered for expert interviews. Given the vast geographical distribution of experts across four provinces and one territory it was not plausible to conduct a focus group, and so this methodology was eliminated from consideration. Fully structured interviews would not provide the appropriate “back and forth” flow required to deeply probe. Further, an unstructured interview is too difficult to analyze and quantify.
Semi-structured interviews were then considered. The advantages of semi-structured interviews are myriad. A semi-structured interview can:
Help to deﬁne the areas to be explored, but also allows the interviewer or interviewee to diverge in order to pursue an idea or response in more detail. This interview format is used most frequently in healthcare, as it provides participants with some guidance on what to talk about, which many ﬁnd helpful. The ﬂexibility of this approach, particularly compared to structured interviews, also allows for the discovery or elaboration of information that is important to participants but may not have previously been thought of as pertinent by the research team.
The strengths of semi-structured interviews include:
- The depth of the information able to be extracted;
- The fact that the respondent can influence the topic so that unexpected issues and topics emerge;
- The researcher can probe to understand perspectives and experiences; and
- The topic guide [of questions] ensures that a core list of questions is asked in each interview, and because the order of questions is not fixed the flow and sharing of views can be more natural.
The weaknesses or challenges of semi-structured interviews are:
- Trained interviewers are needed to probe without being directive or judgmental;
- The analysis of findings is more difficult as it must be done by the person or people who conducted the interviews;
- The researcher has to try to avoid bias in analysis;
- The researcher needs to know something of the local culture to capture the interviewees’ real meaning;
- The analysis can be time-consuming; and
- In some cases it can be difficult to generalize findings.
The weaknesses were mitigated by using a trained social science researcher experienced in interview research, having all findings analyzed by the researcher, ensuring that the researcher did have familiarity with each of the jurisdictions, ensuring that the interview schedule was planned as far as practical in advance, and using conscious “checks” to reduce bias.
As the strengths significantly outweighed any weaknesses, and a plan was established to reduce weaknesses, the semi-structured interview format was adopted.
ii. Informant Selection, Confidentiality, and Research Questions
Semi-structured interviews depend not only on skilled researchers, but also on having “good informants”. A “good informant” for a semi-structured expert interview must have the following attributes:
- Be knowledgeable about the topic—an expert by virtue of involvement in specific life events
- Be able to reflect and provide detailed experiential information about the area under investigation
- Be willing to talk
This 3-step model of a “good informant” was adopted for the research methodology and applied in the selection of interviewees.
This research initiative follows the World Health Organization model (WHO guide), for group selection and recommended sample size for semi-structured interviews. In particular, guidelines for a semi-structured interview methodology in community research is explained in s. 3.4 of this WHO guide as follows:
You will need to limit the number of interviews, as semi-structured interviews are quite time-consuming to conduct and analyse. The aim is not to get a representative sample of the various categories of informants, but to gather a substantial body of information from them. Try to limit the list of the people you will interview to around 20-30 who are likely to give you most information on the problem and can choose from a variety of perspectives. You usually only need to interview 3-5 people from each of the identified groups.
While the research proposal only called for 15 total respondents initially, this number was increased to 20 in accordance with the WHO recommendations. Identified groups were also considered, and 3-4 “types” of experts were grouped across jurisdictions. Further discussion of these groups is found under Qualitative Techniques below.
Hardon, Hodgkin and Fresle describe well the semi-structured interview approach:
When conducting semi-structured interviews, the interviewer is prepared with a list of questions and topics to be discussed. The order of the questions and topics parameters are left undefined and are adapted to the flow of the discussion. It is best to start with a topic that is not sensitive and is important to the respondent. Thus, an informal, friendly atmosphere can be created, facilitating a ‘natural’ flow of ideas and opinions. The researcher acts as a moderator, guiding the respondent from one topic to another. Conducting such interviews requires a skilled moderator.
The WHO guide suggests that a foundational step of successful semi-structured interviews is to have a checklist of questions to ask each participant. Moreover, having broader “prompt questions” also helps to shape the scope of the discussion. Prompt questions are useful to ensure that:
…key issues are addressed and the flow of the interview is maintained. The planned order of the prompt questions does not need to be strictly adhered to…for this style of interviewing. Consideration should be given to the phrasing of prompt questions to avoid leading the participant. This is crucial because the interviewer’s expectations can affect the participant’s response.
As such, a checklist of five questions was developed, with ten prompt questions for the expert interviews.
Expert interviewees feel safest providing frank information if they are freed from fear of being quoted and if the interviewer assures the expert interviewee that they will not be identified by their revealed experiences. Confidentiality was thus built into the interview process. One of the findings of a significant literature review on ethical issues and concerns on the part of interviewees suggests that interviewee worry over confidentiality is an inhibiting factor for semi-structured interviews. Further, the “most common threat” felt by interviewees, was that they would be “identified…in writing up of reports and, particularly, the use of quotes. Whilst individuals may not be identifiable to the general public, they may well be identifiable to…the peers also involved in the study”.
In order to confirm whether the issue of confidentiality was valid in this research study, a short series of key informant discussions (n=5) was held. Of these key informant discussions, all agreed that confidential interviews would provide the most candid and frank results.
The semi-structured interviews were thus designed to be confidential, with explanations to interviewees that their name and organizations would be cited as having participated, but that no quotations would be used, and that while institutions may be cited, no reference to “who said what” would be included in the study.
The literature review of best techniques in semi-structured interviews noted above suggested that use of stories and hypotheticals was also encouraged as a method of animating the information garnered through the confidential interviews.
Cases or examples were solicited from expert interviewees wherever possible. Also, stories of people with disabilities were included in the analysis portion of the research project.
iii. Expert Interviewee Recruitment and Process
Key informants who would be “good interviewees” were identified on issues relating to supported decision-maki