Table 1 Phases, activities, and time schedule of data collection and analysis
Phase | Activities | Result |
|---|---|---|
1. Preparation brainstorming phase | Develop and pilot focus prompts (M.B., J.N., E.B., K.V.A., G.L.) •Advice Skype sessions with 3 researchers with expertise on medical care for people with intellectual and developmental disabilities (IDD) •Pre-pilot among 3 IDD physicians concerning focus prompt •Pilot study among 3 members of the IASSIDD Health SIRG Invite possible participants for the study (M.B., J.N., E.B., K.V.A., G.L.) •Create participant sampling plan •Create & send email invitation Make software ready to use (M.B., K.V.A.) | 1 focus prompt |
2. Brainstorming | 25 participants create responses related to the focus prompt | 92 raw statements |
3. Qualitative analysis of raw statements | Qualitative analysis of 92 raw statements that were generated from the 25 participants, according to the following steps (M.B., J.N., H.T.): •Researchers individually analyze the 92 responses looking for underlying dimensions •Researchers compare their analyses and collaboratively decide on the underlying dimensions | 92 raw statements with underlying dimensions |
4. Preparation organization phase | Statement synthesis using the following procedure (M.B., J.N., E.B., G.L.): •Split up statements containing > 1 statement per sentence •Assign keywords to statements •Organize ideas based on keywords to bring overlapping statements together •Remove duplicates •Combine overlapping statements •Edit statements for clarity | 92 raw statements reduced to a set of 79 unique statements |
5. Organization | 21 participants sort statements into piles of conceptually similar statements 18 participants rate statements on a 7-point Likert scale representing importance | 79 statements individually sorted and rated |
6. Preparation analysis phase | Assessment of sorting and rating data using the following criteria (M.B., J.N., E.B.): •Number of sorted statements •Number of created piles •Number of labelled piles (participants could create piles without labelling them) •Consistency of statements within piles •Time spent on the sorting and rating •Variation in rating (e.g., a participant’s rating data was excluded if the same rating was provided to all statements) | Sorting data of 3 participants excluded from analysis |
7. Concept mapping analysis | Analysis using the following methods (M.B., J.N., E.B., K.V.A., H.T., G.L.): A) Multidimensional scaling: create a point map based on the sorting data, visualizing the relationship and proximity of statements to one another B) Hierarchical cluster analysis: create a cluster map by grouping statements that are closest to one another: •Research team collaboratively decides on upper and lower limits of the number of clusters •Researchers individually review the list of statements that are merged when moving from the highest desired number of clusters to the lowest, by looking at the average bridging values of the clusters and statements and the conceptual consistency of statements within clusters •Researchers individually decide the cluster size that retains most useful detail (further merging leads to non-interpretable cluster map) •Researchers collaboratively choose final cluster size and names by examining cluster statements C) Analyze importance ratings: Calculate mean importance rate for statements and clusters | A) Point map B) Cluster map C) Ratings of statements and clusters |
8. Additional sensitivity analysis | Jackknife resampling method: Estimate sensitivity of the concept map by comparing the original allocation of statements within clusters with the 18 distributions resulting from systematically omitting one participant from the sample | Sensitivity for sampling variation |
9. Qualitative analysis of final cluster map | Qualitative interpretation on the final cluster map | 5 themes |