INTERVENTIONS
3.3 APPROACHES FOR GENERATING THEORY OF THE HEALTH PROBLEM
3.3.3 Experiential Approach .1 Overview
The experiential approach relies on input from the target client population to elicit the implicit theory or construction of the health problem requiring intervention. Exploring the target client population’s perspective on how the problem is experienced in daily life and on the most important factors contributing to the problem is critical for designing interventions that are relevant, appropriate, and potentially effective in addressing the problem as actually experienced (Clark, 2015; Huntink et al., 2014;
Leask et al., 2019; O’Brien et al., 2016; Wight et al., 2016; Yardley et al., 2015). The experiential approach is consistent with the principles of public or client engagement in research and in co-designing services, and with the collaborative participatory approach to research (Greenlagh et al., 2016). The highlight of this approach is that researchers work closely with members of the target client population to uncover the population’s view of the health problem.
The experiential approach entails holding meetings with members of the target client population to formulate the population’s perception of the health problem, its indicators, determinants, and consequences. Although the meetings can be sched- uled with individual members (based on their comfort and preference), holding group sessions offers more advantages (Hawkins et al., 2017; O’Brien et al., 2016).
Through group discussion, the members have the opportunity to exchange ideas;
respond to each other’s comments; question, clarify, elaborate, and explain points;
and reach agreement that captures collective, in-depth, and comprehensive knowledge of the health problem (Sidani et al., 2017). Further, the group interaction promotes open and honest discussion of the problem, and prevents members from giving socially desirable and potentially misleading information. This, in turn, increases the likelihood of gaining collective knowledge of the problem that tran- scends individual idiosyncrasies and accurately captures the target population’s per- spective (Vogt et al., 2004). Participants in the group sessions are selected to represent a broad range of those who experience the problem, thereby ensuring that a variety of viewpoints are accounted for when describing the target client population’s per- spective. The number of participants in each group session should not exceed 12, to
enable active and meaningful participation by all members. Multiple sessions may be held to accommodate participants representing different subgroups of the population (defined in terms of sociodemographic and health characteristics).
The group discussion should be carefully planned and executed in order to capture the target client population’s conceptualization or construction of the health problem. Two procedures have been used to attain this goal, and are briefly reviewed here, as applied to gaining an understanding of the problem: concept mapping ( Trochim, 1989; O’Brien et al., 2016; Vijn et al., 2018) and the first step of the integrated cultural adaptation strategy (Sidani et al., 2017).
3.3.3.2 Concept Mapping Overview
Concept mapping is a structured process aimed at articulating thoughts or ideas related to complex phenomena or situations, and the relationships among them ( Trochim, 1989). It results in a process map that delineates the inter-relationships among the health problem and determinants, as perceived by a client population in a particular setting (Ball et al., 2017; Hesselink et al., 2014).
Methods
The concept mapping process integrates a mix of quantitative and qualitative methods for data collection and analysis. It consists of the following steps described by Tro- chim and colleagues (Burke et al., 2005; Trochim & Kane, 2005).
Step 1 – Preparation. In this planning step, decisions are made on the selection of participants (as mentioned previously) and the focal questions to guide the group discussion. These questions focus on eliciting participants’ experience of the problem; view of its indicators and determinants; input on the relative importance of the determinants; and pathways linking the determinants and the problem.
Additional questions are generated to prompt for clarification of ideas or words (e.g. What do you mean?), for delineation of pathways (e.g. Can you explain how these factors are related? Which occurred first and brought/led to the other?), and for reaching agreement on points of discussion (e.g. Does this reflect your thoughts?).
Step 2 – Generation of statements. In this step, selected participants are invited to attend a group session. The group moderator poses the questions prepared in Step 1, requests participants to generate statements that reflect their ideas or thoughts related to how they experience the problem with a special attention to its indicators (e.g. what changes in their condition are considered as indicative of the presence of the problem); what factors contribute to the occurrence, severity, or maintenance of the problem (e.g. What happened that led to the problem or what brought this problem?); and what are the consequences of the problem (e.g. How did the problem affect you?). The moderator and an assistant record the participants’ responses on resources (e.g. projected computer screen, board, flipchart) visible to all group mem- bers. The responses are recorded verbatim in the form of statements as expressed by the participants. Once all statements are documented, the moderator engages the group in a review of the statements to identify duplicates, to recognize irrelevant ones, and to confirm a final list of statements about the presenting problem. The investigators review the transcript of the group session to verify that the generated list of statements accurately and comprehensively reflects the discussion. When sev- eral group sessions are held, the investigators consolidate the statements obtained in
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each session into a final list that consists of an exhaustive nonoverlapping account of all ideas or thoughts about the problem expressed by participants.
Step 3 – Structuring of statements. The goal of this step is to gain an understanding of the inter-relationships among the ideas or thoughts generated in Step 2 that depict the target population’s conceptualization of the problem. This is accom- plished by having participants sort the statements into piles and rate the importance of statements in reflecting the problem. The sorting exercise is done individually by each participant. Each statement is printed on a card. Each participant is given the cards for all statements and instructed to put the cards into piles where each pile contains statements representing similar ideas, as perceived by the individual. No specific directions are given to do the sorting; rather, participants are given the free- dom to arrange the statements in a way that is meaningful to them. However, they are requested to place each statement into one pile only, and not to put all state- ments into one pile. There is no restriction on the number of piles that can be gen- erated. The data obtained with the sorting exercise are entered into a database for analysis. The database consists of a similarity matrix. The rows and columns of the matrix represent the statements, and the data in the cells represent the number of participants who place the pair of statements into the same pile. The similarity matrix is then subjected to multivariate analysis using multidimensional scaling technique and hierarchical cluster analysis. The analysis produces a map that locates nonoverlapping clusters of statements reflecting similar ideas (Trochim &
Kane, 2005). In addition to sorting, the participants are asked to rate each statement in terms of its importance or relevance to the problem, on a five-point rating scale.
These data are also entered in a database and analyzed descriptively. The Concept System software can integrate the importance rating with the sorting data to indi- cate clusters of statements with varying levels of importance (Burke et al., 2005).
The map is presented to the participants for discussion.
Step 4 – Representation. The aim of this step is to choose a final set of clusters that best captures the target population’s conceptualization of the problem. To this end, the same or another group of participants representative of the target population are invited to a session that proceeds as follows:
1. Read the statements generated in Step 2 to familiarize the participants with the ideas or thoughts about the problem.
2. Show the map of clusters and explain that it illustrates the groupings of state- ments obtained with quantitative data analysis performed in Step 3.
3. Review the statements grouped into each cluster and elicit the participants’
feedback about the cluster. Specifically, their agreement is sought on the extent to which statements organized in a cluster reflect a common idea. The participants are given the freedom to challenge the presented clusters and to regroup the statements into clusters that are meaningful to them.
4. Review all clusters located on the map to determine the total number of clus- ters that reflect conceptually distinct ideas about the problem.
5. Review the statements within and across clusters that were rated most impor- tant to identify the ideas of relevance to the problem.
If more than one session is held, then the investigators reconcile the results and integrate them into one comprehensive set of clusters, which is discussed with the participants in the next step of concept mapping.
Step 5 – Interpretation. This step focuses on labeling the clusters and exploring the pathways delineating the relationships among the clusters, as conceived by members of the target population. Again, the members are invited to a session and requested, as a whole group or as small groups of four to five, to carefully review the statements organized into a cluster in Step 4; to discuss the ideas captured in the statements; to identify the common theme underlying the ideas; and to come up with a label (i.e.
short phrase or word) that best describes the theme. The labeling may be based on statements, within a cluster, rated as most important in Step 4. Once all themes are labeled, the moderator engages the group in a cognitive exercise to identify themes that reflect determinants, indicators, and consequences of the problem, and to dia- gram relationships among them. Specifically, participants are asked to indicate (1) what each labeled cluster or theme represents: a determinant of the problem, that is, something that takes place before and leads to the problem; an indicator of the problem, that is, a change in functioning or condition that indicates the presence of the problem; or a consequence of the problem, that is, the impact of the problem on well-being or quality of life; and (2) which determinants are related to each other and to the problem and in what way. This exercise results in a concept map that includes concepts emerging from the labeled clusters and linking lines that delineate which concepts are related and in what way (illustrated with arrows linking related con- cepts), and a set of phrases that describe the proposed linkages among concepts.
The concept map guides the development of the theory of the problem and sub- sequently the design of interventions. Burke et al.’s (2005) work illustrates the appli- cation of concept mapping to explore women’s perception of residential neighborhood factors that contribute to the experience of partner violence.
Strengths
Concept mapping is a useful method for clarifying and accurately reflecting the target client population’s conceptualization of the health problem. The integration of quantitative and qualitative methods for data collection and analysis allows explora- tion of complex problems and enhances the credibility of the results. Obtaining data from individual participants and from the group increases the richness of, and the likelihood of reaching collective agreement on, the resulting conceptualization.
Limitations
The implementation of concept mapping is challenging. It is resource and labor intensive. The conduct of the group sessions requires availability of: suitable location for holding the meetings; well-trained and experienced group moderators; skilled research assistants for entering and analyzing data; appropriate software for analyzing the data; materials for documenting the statements and for sorting and rating them;
and equipment/technology for visually presenting the clusters/map to the group. In addition, the group sessions are long (about three to four hours) and involve intensive cognitive work; the statement sorting exercise is burdensome (Burke et al., 2005).
3.3.3.3 Step 1 of the Integrated Cultural Adaptation Strategy Overview
The integrated strategy was initially proposed as a systematic process for the cultural adaptation of evidence-based interventions (Sidani et al., 2017). It also has been applied to adapt interventions to the needs and contexts of different client populations including post-acute patients in rural areas (Fox et al., 2019) and elder abuse (Guruge et al., 2019).
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Methods
The first step of the strategy focuses on eliciting the target population’s conceptuali- zation of the health problem. It uses a mix of quantitative and qualitative methods to obtain relevant data in group sessions.
Prior to the group session, the researchers generate a list of indicators and determinants of the health problem, from a review of pertinent theories, empirical studies, and practice sources (e.g. consultation with health professionals). The researchers prepare a brief description, in lay terms, of each indicator and deter- minant. The descriptions are incorporated in a questionnaire to assess their rele- vance and/or importance to the target client population. The questionnaire contains the following for each indicator and determinant: its name (e.g. difficulty falling asleep), its description (e.g. it takes 30 minutes or more to fall asleep), and a rating scale (e.g. numeric rating scale anchored with not at all—0 and very much—10) to determine its relevance (i.e. extent to which it is experienced by members of the target population) and importance in contributing to the experi- ence of the health problem. In addition, researchers prepare a set of open-ended questions to engage the group in a discussion to elaborate on the population’s per- spective on the problem and identify other relevant indicators and determinants of the problem.
During the group session, the researchers:
1. Explain the purpose of the session, which is to get an understanding of the client population’s view and experience of the health problem.
2. Give an overview of the health problem by describing what it is.
3. Distribute the questionnaire and provide instructions on how to rate the indi- cators and determinants; that is, their relevance and importance to the population.
4. For each indicator and determinant, read its name and description; clarify any misunderstanding; and invite participants to complete the rating, individu- ally, by selecting the most appropriate response option.
5. Once all indicators and determinants are rated, engage participants in a discussion to further elaborate on the conceptualization of the problem.
Guiding questions include: (1) Which indicators are commonly reported when people experience the health problem? Are there other indicators?
Which indicators are most important and could be managed to help resolve the problem? (2) Which determinants significantly contribute to or cause the health problem? How do these determinants lead or cause the problem? Are there other determinants? Which determinants should be addressed to help resolve the problem? Which should be given priority? What makes them important? (3) Are the indicators and determinants important for all people or are some more or less important for particular groups of people (e.g. men/
women, young/older)?
After all group sessions are completed, the quantitative ratings are analyzed descrip- tively to determine the most relevant and important indicators and determinants (indi- cated by high means and low variances). The transcripts of the qualitative comments are content analyzed. A matrix is used to integrate quantitative and qualitative findings and identify the most relevant indicator of the health problem, the most important determinants, how the determinants contribute to the problem, and possible differ- ences across subgroups of the target population. The application of this method is
illustrated in Sidani et al. (2018b) who found that Chinese Canadians experience insomnia as difficulty initiating sleep, which they attribute to high levels of stress.
Strengths
The first step of the integrative strategy for cultural adaptation of interventions has the same advantages as concept mapping. However, its application is less cognitively burdensome.
Limitations
Integration of the quantitative and qualitative data may be challenging.
3.3.3.4 Strengths and Limitations
The experiential approach is a useful means for accessing the implicit theory or con- ceptualization of the health problem held by client populations, in contexts not rep- resented or investigated in previous studies, as is often the case with marginalized groups or ethno-cultural communities (Buffel, 2018). However, this approach has some limitations related to the selection of the target population members and the size of the participating group. These limitations may lead to unrepresentative sample, yielding potentially biased results that may not be applicable to all subgroups of the target population.