Abstract
Aim
To critically explore the value and challenges of combining a traditional methodology (constructivist grounded theory) with a newer approach (Patient-Oriented Research) in nursing research.
Overview of the Issue
Researchers need to examine novel approaches to research which incorporate the thoughts and ideas of patients and stakeholders in order to ensure that the research is important to end users. However, it is essential to maintain the rigour of traditional methodologies. Therefore, there is a need to explore combining traditional methodologies with new approaches.
Results
We combined a rigorous methodology with a modern approach to health promotion research that has not been described in the literature. There are numerous synergies between constructivist grounded theory and Patient-Oriented Research. However, tensions exist including pre-conceived knowledge, patients as researchers, and flexibility in research direction.
Discussion
Constructivist grounded theory with a Patient-Oriented Research approach for use in health promotion research requires thought and intentionality. Consideration of the time and money needed to build relationships and include patient partners as full team members is critical to successful research. Additionally, points of synergy and tension between constructivist grounded theory and Patient-Oriented Research must be navigated with each study.
Conclusion
Our findings indicate that constructivist grounded theory can be enhanced with a Patient-Oriented Research approach and may lead to increased depth in the development of the substantive grounded theory while also giving voice to the patient-partners.
Implications for Profession
There is a need for researchers to actively engage patients and stakeholders in a Patient-Oriented Research process while retaining the core of traditional methodologies.
Impact
This paper will provide researchers with an exemplar to incorporate patients as team members while conducting constructivist grounded theory research.
Keywords
Introduction
Healthcare has shifted from a traditional approach which situated patients as recipients of health services to being engaged in decision-making about their personal care and the broader decisions which impact service delivery (Bombard et al., 2018). Engaging patients has led to improved quality of care and changed the culture of healthcare settings (Bombard et al., 2018). A similar shift in patient engagement is being adopted by many health researchers in the form of Patient-Oriented Research (POR) which gives voice to patients and stakeholders as research team members (Forsythe et al., 2019). A POR approach in research has been shown to help ensure that topics are important to end users, assist with participant recruitment, and result in more accessible, widespread dissemination of study findings (Brett et al., 2014; Domecq et al., 2014; Forsythe et al., 2019; Johnson et al., 2016).
Patient-Oriented Research is an approach to patient engagement but is not a research methodology. While there are philosophical ideas which could be associated with POR, there are no specific methods of data gathering or analysis. The lack of clear methodological guidance in POR necessitates the use of a traditional methodology to provide a framework in which to effectively use a POR approach. For example, in our research, Charmaz’s (2014) constructivist grounded theory (GT) was used to provide the methodological framework for a study exploring the social and emotional benefits and barriers of traditional karate for children from low-income settings. Constructivist GT was selected as the appropriate methodology due to its fit with the aims of the research including examining basic social process and theory development, as well as its specific ontological and epistemological standpoint which created synergies with POR (Charmaz, 2014). Careful consideration needs to be given when selecting methodologies and approaches as every aspect of the research is impacted. Patient-Oriented Research was selected for this study because this approach supported the researchers in better understanding the vulnerable population understudy and ensuring that the research was important to the stakeholder organizations. Once POR was selected, a methodology was needed which would align with POR and the research team’s philosophy. Constructivist GT with a POR approach was deemed to be the most suitable methodology for this study and resulted in multiple benefits and practical outcomes for the patients. In our experience, there were synergies and tensions when GT and POR were integrated. It is imperative that researchers examine ways to conduct rigourous research while valuing the voice of patients and stakeholders.
Background
Grounded Theory
Grounded theory, created by Glaser and Strauss (1967), added rigour to previously unstructured qualitative research. Knowledge creation in GT is informed by an inductive approach that encourages researchers to keep an open mind and allow the data to guide the direction of the research and theory formation. Subsequently, this method supports creation of a substantive theory that is grounded in the data and cannot be easily refuted or discredited by additional data (Glaser & Holton, 2005; Wuest, 2012). Grounded theory has many variations; however, all approaches subscribe to symbolic interactionism and pragmatism.
Philosophical Underpinnings of Grounded Theory
Symbolic interactionism is the belief that society and self-perception are constructed through interaction with others (Blumer, 1967). Originally identified in the Chicago School era, symbolic interactionism was adopted by Glaser and Strauss and positioned language and communication as essential to give meaning to people’s lives (Blumer, 1967; Charmaz, 2014). Adding to the symbolic interactionist approach, Blumer believed it was not possible to separate a person from the context within which they live. A researcher that subscribes to the tenets of symbolic interactionism is not only concerned with the meanings of a concept but how these meanings are enacted (Wuest, 2012).
Pragmatism is rooted in western philosophy and pragmatists believe that research must produce practical knowledge (Wuest, 2012). When using a pragmatic approach, according to Charmaz (2014), analysis of the underlying meaning of the data is understood through actions to solve problems. The goal of pragmatism is to instigate change and disrupt structural norms rather than merely observing a phenomenon. Furthermore, Charmaz stated, “Pragmatism views reality as fluid and somewhat indeterminate, and as open to multiple interpretations” (p. 263). Pragmatism links fact and values, and places truth as relative (Charmaz, 2014; Corbin, 2009).
Constructivist GT as a Unique Version of GT
Each version of GT is associated with its own ontology and epistemology. The epistemological stance of the original (Glaserian) GT is commonly associated with positivism and empiricism (Charmaz, 2017). This philosophy places the researcher as a neutral observer with the understanding that there is one unifying truth (Charmaz, 2014; Rieger, 2019). Straussian GT researchers moved away from some of the original positivistic viewpoints. For example, Strauss believed that there was one reality but it was socially interpreted and the meaning assigned to an event was more important than the event itself (Corbin, 2009; Rieger, 2019). The evolution of Straussian GT continued after Strauss’s death, moving closer to a constructivist approach (Corbin, 2009).
Constructivist GT diverges from previous versions of GT in researchers’ ontological and epistemological approach. Charmaz (2014) took a relativist and constructivist approach to the grounded theory methodology. Charmaz believed that the grounded theory resulting from her research approach, builds an image of reality as interpreted by the researcher and that there may be many different interpretations. This relativist perspective claims multiple realities in which truth is a social construct built in relationship with others (Charmaz, 2014; Rieger, 2019). Constructivist GT researchers seek to understand participants’ beliefs and actions in the context of time, space, and situation (Charmaz, 2017). Additionally, constructivist GT researchers follow the constructivist paradigm believing that theories and analysis are co-created between researchers and participants (Charmaz, 2009). This was a change from Glaser and Strauss (1967) belief that theories emerged from the data. In constructivist GT, language is viewed as a heavily laden construct which is a fit with symbolic interactionism (Charmaz, 2009). Constructivism and relativism shaped constructivist GT researchers’ viewpoint on reality and knowledge creation.
The methods of data gathering are similar in all versions of GT; however, how the methods are implemented in constructivist GT, are shaped by a relativist and constructivist lens. Methods common with all forms of GT are the use of purposive sampling, theoretical sampling, constant comparison, line by line coding, field notes, and memo writing (Charmaz, 2014; Glaser & Strauss, 1967). The constructivist and relativist approach shapes all stages of planning, data gathering, analysis, and substantive theory formation. In constructivist GT, the researcher is not seeking one truth but, instead, facilitates exploration of the multiple realities of the participants; thus, making the analysis and findings different from other versions of GT (Charmaz, 2006). Additionally, analysis as a co-construction positions researchers and participants as ‘insiders’, incorporating both their thoughts and ideas throughout the research process (Charmaz, 2014). Furthermore, the reflexive approach to memo writing used by Charmaz (2014) is supported by a relativist ontology. Reflexivity is used to examine the researcher’s thoughts about the data and analysis in relation to their personal experiences in order to incorporate the researcher’s unique ideas without allowing their ideas to overwhelm the research (Charmaz, 2017). Reflexivity was absent from the original GT as the researcher was separate from the research (Glaser & Strauss, 1967).
Why Constructivist GT
While all forms of GT have merit, constructivist GT was selected for this research due to the philosophical alignment with the researchers’ beliefs. More importantly, this approach allowed for experiences of the participants to be uncovered and aligned most successfully with POR. Constructivist GT supported the premises that truth is relative and a social construct, results do not emerge but are constructed, and the researcher and participants are fully integrated into the research process (Charmaz, 2017). These underpinnings allow for closer alignment with POR than other versions of GT. Additionally, the ontological and epistemological underpinnings of relativism and constructivism influence all aspects of the research. The philosophical background and stringent methods of GT created a rigorous framework in which research can be conducted.
Patient-Oriented Research
Patient-Oriented Research is a novel approach to inquiry that incorporates patients and stakeholders as research team members. Patients are not participants in the research, but rather serve as full members of research teams. Including patients or those with lived experience on the research team is a way to diminish the gap between researcher and patient and deepen patient engagement (Aubin et al., 2019; Domecq et al., 2014). Originally, POR was used in healthcare research; therefore, patients or family members are conventionally identified as persons with the disease, condition, or lived experience under study (Canadian Institute for Health Research, 2011). Patient-Oriented Research is a significant shift from the traditional approach to research and values the experiential knowledge of patients, clinicians, and stakeholders in the research process (Patrick et al., 2018).
Patient-Oriented Research focuses on the processes and experiences of participants rather than health outcomes alone (Canadian Institute for Health Research, 2011). Traditionally, researchers incorporated participants as objects of the research. This gave participants an opportunity to explain their experiences and express their concerns; however, the direction of the research and the data interpretation was at the discretion of the researchers (Aubin et al., 2019). Patient-Oriented Research differs from traditional research in that patients can be involved in all aspects of the research including; planning, data gathering, analysis, and knowledge dissemination which gives patients and stakeholders an opportunity to guide the direction of the research (Canadian Institute for Health Research, 2011).
Why Use a POR Approach?
Engaging patients in research teams is viewed as an ethical approach that gives patients voice, and breaks down barriers between health professionals and patients (Aubin et al., 2019; Domecq et al., 2014). The main argument for the use of POR is that patients have the right to be part of research and decision-making (Aubin et al., 2019). However, there is limited evidence to support the efficacy of a POR approach in improving patient health outcomes; but, there is evidence to support the usefulness of POR in certain aspects of the research (Aubin et al., 2019; Domecq et al., 2014; Hamilton et al., 2018; Mockford et al., 2012).
One of the primary reasons for using a POR approach is to ensure that the research direction is important to the end users. Highlighting the challenges of selecting appropriate research priorities, a Canadian study of dialysis research found that only one in five studies examined a top 10 research priority as identified by patients and clinicians (Jun et al., 2015). These same researchers believed this could be improved with the use of POR (Jun et al., 2015). In the current fiscal restraints, selecting appropriate research direction is essential, because funding needs to be spent on research that adds value in practical terms (Patrick et al., 2018). This has led to a movement to increase alignment of researcher-to-patient priorities and applicability to patients through inclusion of patients and stakeholders in the planning phase (Brett et al., 2014; Domecq et al., 2014; Forsythe et al., 2019; Hamilton et al., 2018; Johnson et al., 2016; Jun et al., 2015). Although Domecq et al. (2014) pointed to the lack of formal evidence stating that “it is assumed” (abstract section) that POR will lead to patient driven research, there are a number of studies that support the impact of POR on developing user-relevant topics (Forsythe et al., 2019; Hamilton et al., 2018; Johnson et al., 2016; Jun et al., 2015). In a systematic review, evidence supported the use of POR to develop user relevant priorities (Brett et al., 2014). Similarly, in another systematic review, it was reported that in four cases, patient-partners refuted researcher beliefs leading to a change in research priorities (Forsythe et al., 2019). Additionally, anecdotal evidence by patients and researchers described how POR shifted researchers’ viewpoint and made researchers consider the concerns of real people and not just examine data (Johnson et al., 2016). The evidence supports the use of POR to determine patient-and-stakeholder-driven study outcomes.
A second reason for using POR is to improve recruitment and retention. (Brett et al., 2014; Domecq et al., 2014; Forsythe et al., 2019). In a study by Forsythe et al. (2019), patients assisted in developing recruitment material and consents, setting compensation rates, and anticipating participants’ barriers especially among hard-to-reach populations. Furthermore, patients often had better access to the population under study and had more practical ideas to recruit potential participants (Brett et al., 2014). In addition to patient involvement, stakeholder involvement helped eliminate unanticipated challenges at an organizational level improving recruitment and overall research success (Brett et al., 2014; Forsythe et al., 2019). Not only did POR increase recruitment of participants, POR projects were also shown to have decreased rates of attrition (Domecq et al., 2014).
A third advantage of the implementation of POR is the improvement of knowledge dissemination. In two systematic reviews, it was found that patient-partners and organizational stakeholders helped inform researchers about the most effective methods and locations for dissemination (Brett et al., 2014; Forsythe et al., 2019). Patients helped create reports that were at an appropriate reading level, contained less jargon, were culturally sensitive, and viewed as more credible (Brett et al., 2014). While creative and engaging knowledge translation can occur with traditional research methodologies, a POR approach is meant to reflect healthcare needs and patient preferences (Hamilton et al., 2018).
Data Sources
Peer-reviewed articles, select patient-oriented research websites, discussions with patient partners, and the researchers’ experience engaging in a constructivist GT study with a POR approach were used as data sources for this article.
Overview of the Issue
There is a need to conduct research that is valuable to end users through incorporating patients and stakeholders in engaging in all research processes from the initial planning stages to completion and knowledge dissemination. However, Patient-Oriented Research is an approach to conducting research and should be combined with a rigorous methodology to ensure sound research, Nevertheless, combining POR with constructivist GT can be challenging. Constructivist GT is a methodology with specific traditions and set methods; whereas, POR is a flexible approach that requires patient and stakeholder engagement and team members. Therefore, there are synergies and tensions that exist when attempting to combine POR with constructivist GT The purpose of this article is to describe novel health promotion research in which POR and constructivist grounded theory were successfully integrated to delineate the unique synergies, tensions, and valuable lessons learned.
Results
Synergies Between POR and Constructivist GT
Research can be strengthened by combining constructivist GT and POR given that a number of points of synergy exist between the two including the philosophical roots, approach, and many of the methods. While all forms of GT have certain commonalities which align with a POR approach, the unique aspects of constructivist GT allowed for successful integration and effective research processes.
Pragmatic Approach and Symbolic Interactionism
A number of the philosophical roots of each GT approach align with the POR approach. For example, pragmatism is central to GT and POR as the use of both create research that is practical and helpful in the real world (Canadian Institute for Health Research, 2011; Charmaz, 2014). In fact, a POR approach may enhance the pragmatism of GT research by directing research towards patient and stakeholders’ needs and interests. Furthermore, pragmatism is linked to patient experiences and positions patients as experts in the research process (Allemang et al., 2022). Similarly, the concept of symbolic interactionism is foundational to GT and is also applied by Patient-Oriented researchers through patients’ involvement in analysis including word choices and interpreting participant actions.
Inductive Approach
An inductive approach is also a similarity between all GT approaches and POR. Grounded theory is designed from an inductive approach as researchers begin their inquiry with little foreknowledge and build theory from data gathered (Glaser & Holton, 2005). In constructivist GT, the simultaneous process of data gathering and analysis lends itself to an inductive approach as it allows the researcher to change direction based on early findings. Although inductive reasoning is not explicitly discussed in POR literature, it can be argued that most POR researchers use an inductive approach. Patient-Oriented researchers engage in multiple meetings with patients and stakeholders prior to and during the study process which helps guide the inquiry and can move the research in a different direction than the original intent.
The Grounded Theory Basic Social Process
The selection of a basic social process (BSP) is an important point of convergence between all GT approaches and POR. When using the GT methodology, selecting a BSP is a key step which can be supported by the engagement of patient partners. One of Charmaz’s (2014) concerns about choice of a BSP in constructivist GT is that its selection is a decision made by researchers who have their own experiences and biases. Constructivist GT researchers aim to mitigate this bias through constant comparison, multi-stage data gathering, and memo writing (Charmaz, 2014). Adding patients as members of the research team increases the diversity and experience. Patients can be consulted to affirm that the BSP describes their personal experiences of the phenomena of interest which may reduce researcher bias and bring practical viewpoints to team discussions.
Relativism and Constructivism
The ontological and epistemological stance of constructivist GT researchers is synergistic with POR. Constructivist GT researchers subscribe to relativism and constructivism which are well suited to a POR approach unlike the original GT which uses a positivistic approach (Charmaz, 2014). In using constructivist GT, multiple realities can be uncovered and enhanced by using POR which incorporates the diverse voices of patients and stakeholders on research teams and seeks each team member’s experience and knowledge (Charmaz, 2014; Johnson et al., 2016). Constructivism is also central to constructivist GT and is demonstrated in GT by using reflexivity in constant comparison, memo writing, and theoretical sampling during which, the participants inform the developing analysis (Charmaz, 2009). Patient-Oriented researchers enact constructivism by supporting patients to take part in creating research questions, aiding with data analysis, assessing results, providing recommendations, and assisting with knowledge translation.
Grounded Theory Methods
Choice and execution of methods in constructivist grounded theory reflect the values of the researcher (Charmaz, 2017). Therefore, although the methods in all forms of GT may be similar, the execution is completed through the lens of constructivism which is suitable for POR. In constructivist GT, the role of the researcher and participants influences how methods are enacted making this version of GT particularly suited to a POR approach. Patient-Oriented Research does not have specific methods associated with the approach; therefore, the use of well-established methods from constructivist GT strengthens POR. Conversely, using a POR approach can enhance the use of GT methods.
Constant comparison is central to all GT approaches and a good fit with POR. However, a constructivist approach uses constant comparison as a part of the reflexivity of the researcher to examine their values and decisions and how their beliefs may have impacted the findings (Charmaz, 2017). Constant comparison is conducted when the researcher examines original transcripts, codes, and memos for validation and uses theoretical sampling to interview participants who can add to the evolving analysis and substantive theory development (Charmaz, 2014). In POR, a select group of patients are sought as team members to provide input during the analysis through the lens of their experiences.
Interpretation and making meaning of data is a collaborative approach in constructivist GT. Researchers are viewed as co-creators of knowledge through their interaction with participants and data (Rieger, 2019). POR adds another layer of complexity to the co-creation of knowledge by including patient-partners and stakeholders in the construction. Co-construction is unique to constructivist GT and furthered the suitability with POR. Constructivism positions researchers within the research process recognizing that a researcher’s values and beliefs impact data analysis (Charmaz, 2014). Constructivist researchers are expected to examine their beliefs to ensure they have minimal influence on the results. This aligns with POR because patients are asked to contribute to the analysis and question the analysis and results which strengthens constructivist GT beliefs.
The unique coding process in constructivist grounded theory uses two stages initial coding and focused coding. Initial coding fragments the data into a multitude of codes and focused coding is a process of grouping the codes back together and determining the most salient codes (Rieger, 2019). Unlike other forms of GT, constructivist GT allows for diverse analysis methods to make meaning of the data (Rieger, 2019).
Additionally, the GT method of using diverse information as data also fits with a POR approach. Charmaz (2014) speaks to the use of documents including emails, photographs, and videos, and Glaser goes as far as saying “all is data” (Glaser, 2007, para 1). Therefore, inclusion of the voices of patients and stakeholders by integrating a POR approach is appropriate for use with constructivist GT. While GT was not created with the intention of pairing with a POR approach, the methods do not preclude the use of POR, and each may augment the other. Constructivist GT and POR have many synergies that make it possible to combine the methodology and approach. In fact, POR can enhance many aspects of constructivist GT; however, there are challenges when combining the two.
Tensions Between Constructivist GT and POR
Combining constructivist GT and POR and being true to both traditions is challenging for several reasons including the use of pre-conceived data, patients as researchers, and flexibility in research direction. Originally, GT was designed to enter the data-gathering phase with little pre-conceived knowledge (Glaser & Strauss, 1967; Smith-MacDonald et al., 2019). Conversely, POR, strongly encourages the use of pre-conceived data through multiple consultations with patients and, or stakeholders prior to commencing research (Domecq et al., 2014). However, Charmaz (2014) incorporated the use of sensitizing concepts in constructivist GT which allows for the use of pre-conceived knowledge. Sensitizing concepts are the first tentative ideas from the researcher’s pre-existing knowledge that lead investigators to build ideas and questions to guide research. Both pre-consultation in POR and sensitizing concepts in constructivist GT result in the appropriate research direction prior to data collection (Charmaz, 2014).
An additional challenge in combining constructivist GT and POR is the use of patients and stakeholders as team members in the research process. In POR, patients are often engaged in data gathering and analysis, which is in tension with GT researchers, who seek autonomy in both processes (Domecq et al., 2014; Smith-MacDonald et al., 2019). Traditional grounded theory researchers do not include patients in data gathering and analysis. However, from a POR approach, it is encouraged and considered feasible, even in cases where the patients are vulnerable (Domecq et al., 2014). The question remains as to whether a researcher remaining autonomous is the best approach. There are advantages to both approaches. For example, patient-partners are generally not experienced interviewers but participants may connect to patient-partners more than a researcher and may be more willing to openly share their experiences. Alternatively, an experienced interviewer may be able to encourage and draw out interesting ideas through their interview skills and research knowledge. Reconciling the need for patient-partner involvement with researcher autonomy is not simple and the appropriateness of involvement of patient partners’ needs to be examined with each research study.
The final challenge of combining constructivist GT and POR is the need to be flexible to change research direction as needed. While flexibility in research direction is common to both GT and POR, how that direction is determined is different. Grounded theory researchers follow the data, whereas POR is guided by the patient-partner team members in conjunction with the data. While the data and the patient-partner experience can align, they may not. The early data from GT may lead the researcher in one direction, whereas the voice of the patient-partners may suggest the research follow a different course. Determining the best direction for a research process and following the data and/or the patient-partner experience needs to be navigated on a case-by-case basis.
Synergies and Tensions between Constructivist GT and POR.
Using Constructivist Grounded Theory and Patient-Oriented Research to Enhance Health Promotion Research: An Exemplar
Use of Constructivist GT and POR at Each Step of the Research Process.
Building a Team
Building a team with considerations for both constructivist GT and a POR approach is time-consuming but a strong team provides the foundation for a successful study. A POR team must incorporate stakeholders and patient-partners while including all the components of a traditional research team. Initial team building for this research began three years prior to data collection.
Meaningful patient-partner engagement is essential to a successful POR team (Domecq et al., 2014). Patient-partner and stakeholders were recruited at the start of the planning to provide input on the research plan. Four parents and two former karate students have been patient-partners at different points in the research by participating in team meetings, planning, reviewing findings, and participating in knowledge translation activities. Patient-partners were often not able to commit to the team for the duration of the study. For example, one patient-partner had a baby, another could no longer commit to the team due to family challenges, and two patient-partners were on the team for a short period of time and then chose to no longer continue. There were two patient-partners on the team at any given time, but only one patient-partner was consistent from start to finish.
Stakeholders were representatives of the provincial sport regulatory body and provincial and national karate organizations. The organizations were invested in making sport more accessible for all children and had the power to implement decisions in their organizations, making them valuable team members. Meetings with stakeholders were held to discuss the research and possible research direction. Incorporating stakeholders on the team throughout the research increased the chances of stakeholder engagement and implementation of the research findings.
Experienced researchers were also essential to the team. As this was Ph.D. research in the field of nursing, two co-supervisors (nursing faculty) and three additional committee members (two nursing faculty and one kinesiology faculty member) helped guide the research. These team members had expertise in methodology, pediatric healthcare, and/or sport. The co-supervisors and committee members guided the entire research process including ensuring that the constructivist grounded theory methodology was closely followed and the philosophy of nursing was embedded throughout.
Group meetings were held that included stakeholders, patient-partners, and researchers. These meetings helped the team get to know one another, discuss research ideas, and build a plan for the research. Developing a research team was time-consuming but essential, and created the foundation for the research.
Background
Prior to data collection, background information was gathered using both a POR approach and traditional research methods. Sensitizing concepts were created through meetings with interested parents and an integrative literature review. Traditional GT researchers would not include participant meetings nor a literature review prior to research; however, Charmaz outlined the use of sensitizing concepts which uses pre-research data to provide an initial direction for the research (Charmaz, 2014).
Using a POR approach, three parent advisory group meetings were held with parents and grandparents who had children participating in charitably funded sport to discuss the benefits and barriers to sport participation (Domecq et al., 2014; Forsythe et al., 2019). Patient-partners assisted with initial parent advisory meetings through planning, recruiting individuals, and actively participating in the discussions. The patient partners helped plan the location, food, and discussion points. Patient-partners recruited their friends, acquaintances, and classmates to participate in the advisory group which increased attendance at the events. Additionally, patient-partners were often the first to answer one of the prompts which encouraged others to participate. The parent advisory group members were concerned with the emotional and social benefits and barriers of sport which guided the initial direction of the study.
The integrative review followed traditional research methods and three overarching themes were found: Social Benefits (Friends and Fun, and Improved Social Skills), Emotional Benefits (Confidence and Decreased Negative Emotional Symptoms), and Barriers and Facilitators (Psychological Safety, Social Supports, Competing Priorities, Availability of Activities and Facilities, and Economic Challenges) (Nelson et al., 2022). The literature search confirmed many of the comments and concerns expressed by parents and patient-partners. Together, the parent advisory group meetings and literature review supported the need for additional research.
Research Purpose, Objectives, and Questions
The research purpose, objectives, and questions were informed by constructivist GT methodology and a POR approach. The overall purpose of the research was to explore the benefits and barriers of traditional karate participation for children from low-income settings with particular focus on social and emotional benefits (Nelson et al., 2023). Objective one was to understand the social and emotional benefits of traditional karate and was based on the information from the initial parent advisory group meetings and stakeholder meetings. Whereas objectives two and three which examined the social process and created a substantive theory aligned closely with all GT approaches (Nelson et al., 2023). The objectives led to the development of the research questions that guided this inquiry which reflected the constructivist GT methodology and POR. Common to all forms of GT, the research question examined a population in a specific circumstance and looks for the underlying social process. However, for this unique study, the research question was created using a constructivist and POR process and in collaboration with the research team, patient-partners and stakeholders. GT led to the examination of the underlying social process and the POR approach focused the research on the social and emotional aspects of sport.
Research Methods
The research methods were selected following the constructivist GT methodology including a demographic survey and intensive interviews (Charmaz, 2014). The use of photos were added as a child-centred form of data collection in consultation with patient-partners and traditional research team members. The demographic survey and interview questions were created and revised based on input from stakeholders, patient-partners, and the PhD committee members combining both a GT methodology and POR approach. Stakeholders were particularly interested in aligning the age group understudy to their program focus, participants’ sources for finding sport information, and barriers to sport participation. A patient-partner took part in a mock interview to test the interview questions and recording equipment, and informally reviewed the interview questions with her child at home. The patient-partner and her child provided feedback on the interview questions to ensure the language was appropriate and the questions asked were important to her and her child’s experience.
Data Gathering
Data gathering was completed following the constructivist GT methodology. The POR approach was not used in this phase of the research process. Patient-Oriented Research is flexible and while patient-partner involvement is encouraged at all stages, there is no minimum requirement for patient involvement (Forsythe et al., 2019). However, as a part of PhD research, it was important for the Ph.D. candidate to collect data as a learning opportunity.
In the first two phases of interviewing, convenience sampling was used to recruit participants and theoretical sampling was used in the third phase. All participants completed a demographic survey and were interviewed using the first interview guide. The interview questions included questions on the benefits of karate and the barriers for children and participants experiences in karate. After the first interviews and analysis, a new guide was created for the second interview with participants to examine questions that came to light in the first interview. As suggested by the patient-partners and team members, the children also participated in an exercise in which they were asked to take pictures or create drawings of themselves and objects that expressed how they felt about karate. The photos and drawings were used as discussion points in their second interview. The photos added to the discussion and allowed children to express, with greater depth, how they felt about karate. In the third interview, using theoretical sampling, some participants were asked to provide feedback on the emerging BSP and the evolving theory. Following constructivist GT methods, field notes were completed immediately after the interview to capture the environment, actions of the participant, and initial impressions of the data being collected.
Data Analysis
Analysis followed the coding process as per the constructivist GT methodology and included patient-partners feedback about the ongoing analysis. Analytic memos were created after each interview and during the coding process to describe researcher thought processes and decision-making in initial coding, focused coding, and theoretical coding. Initial coding occurred after each interview (Charmaz, 2014). Constant comparison was incorporated at all points, comparing data to data, categories to data, and substantive theory to categories to ensure that the resultant substantive theory was grounded in the data (Charmaz, 2014). This was not a linear process, and data gathering and analysis occurred simultaneously with movement back and forth between the two. As part of the analysis, the social problem the participants were experiencing was defined and found to be lack of opportunity to belong. Then, a BSP was created and formed the core of the substantive theory created in the study titled: “Finding Belonging through Sport Participation for Children from Low-Income Settings: A Grounded Theory” (Nelson et al., 2023). The BSP described the ways in which participants attempted to solve their perceived lack of opportunity to belong.
The POR approach remained central during the data analysis phase of the research process, with patient-partners and stakeholders providing input and their expertise. Patient-partners helped ensure that the evolving substantive theory represented the data and reflected their own experiences. For example, patient-partners used a pragmatic lens to determine whether the findings made sense and would be useful to describe their child’s experience. Patients also provided a check for a symbolic interactionist approach by examining word choices and how the selection of words impacted the meaning of the findings. Specifically, patient-partners and participants did not like the word “poverty” and felt the word described someone who was in a desperate situation and did not represent their experience. These discussions led to word choices such as low-income that patient-partners and participants believed were more accurate descriptors.
Knowledge Translation
Knowledge translation is ongoing including traditional methods of knowledge translation such as academic articles and presentations. Patient-partners and stakeholders have been asked to review and provide input into all knowledge translation activities. Patient-Oriented Research focused knowledge translation has begun with the presentation of preliminary findings to the provincial karate regulatory body and the sport governing body. Additionally, a video was created that examined the used of POR for this research that included the voices of patient-partners and karate participants. Knowledge translation activities will continue to be created and every attempt will be made to reflect constructivist GT traditions, as well as incorporating a POR approach.
Discussion
As a research team, combining constructivist GT with POR proved to be a challenging but rewarding and effective research process. Constructivist GT methodology may be the most appropriate version of GT to fit with POR due to its constructivist and relativist underpinnings. Patient-Oriented Research is a significant directional change in research which distributes power across researchers, patients, and stakeholders (Aubin et al., 2019). Patients and stakeholders traditionally did not have input into how research planning or implementation and contributed to research as subjects. Increasingly, there has been a shift which values personal experience and individuals as being experts of their own experience. This shift does not devalue the experience of skilled researchers and clinicians but recognizes that persons with lived experience may have equally valid, yet different knowledge. The recognition of patients as experts in their own experience is a change in nursing practice which is now being reflected in nursing research. Incorporating patients onto research teams is an important way to recognize patient knowledge.
When POR is integrated with constructivist GT successfully it can benefit the patient, researcher, and research processes. One of the patient-partners on the team spoke to the importance of POR stating, “I believe that Patient-Oriented Research is important because you are able to gain information from those that are actually experiencing the research data first hand” (C. Achen, personal communication). This sentiment aligns with evidence that shows POR can lead to research directions and findings that reflect critical patient priorities (Domecq et al., 2014; Hamilton et al., 2018; Jun et al., 2015).
Patient-Oriented Research can also be empowering for those participating on the teams by giving them an opportunity to voice their concerns, build skills, and be part of creating research that is practical and helpful (Hamilton et al., 2018). In order for POR to be maximally beneficial to both patients and researchers, teams need to ensure that patients understand their participation is needed and valued (Hamilton et al., 2018). According to a patient, “being part of the patient-oriented team was valuable to me as I was able to gain a better understanding of the project. I also felt that my lived experience was beneficial, so I felt like a valued contributor” (C. Achen, August 31, 2021, personal communication). To gain the full value of a POR approach, time and energy are essential to foster relationships and build teams through multiple discussions, making space for patient participation during meetings, and clearly expressing the value that patients add to the research team.
Stakeholders also served a valuable role throughout the research process. Stakeholders ensured that the research was relevant to the organizations they represented and created supportive engagement. It took time for all parties to have ongoing meetings with stakeholder organizations, but this led to the sharing of valuable information that would not have been known otherwise. For example, speaking to a representative of the provincial sport governing body, the research team learned that children that did not regularly attend school or had behavioural issues were not eligible to participate in the program. Therefore, some of the highest risk children were not in the program, nor did they participate in the study. The parents and children did not speak to this, nor was this information found on organizational websites. This led to a different understanding of the research findings knowing that some of the most vulnerable children were not allowed to participate in sport and that more barriers exist that may not have been examined. Stakeholder engagement had the additional benefit of encouraging rapid dissemination to stakeholder organizations (Brett et al., 2014; Forsythe et al., 2019). Stakeholders were excited about the research and wished to share it with their larger organizations, as well as to implement study findings.
Lessons Learned About combining POR and GT
Using a POR approach involves additional considerations beyond a traditional constructivist GT study. Through conducting this study, it became obvious that considerations needed to be made for the extra time and money required, the necessity of building relationships, and the requirement to consider practical supports to encourage patients to participate. In the literature, there was universal agreement that POR research was more time-consuming than traditional research due to the time required to fully incorporate patients on teams (Domecq et al., 2014; Forsythe et al., 2019; Johnson et al., 2016). The planning phase of this research was lengthy due to the POR approach, with patient and stakeholder meetings which began years before data collection (Boden et al., 2021). One of the time-consuming aspects of planning was that neither patient-partners nor stakeholders had research experience which led to requests that were outside of the scope of the study. For example, one stakeholder was interested in examining sport for incarcerated youth. As such, education was required to support the full engagement of patients and stakeholders (Hamilton et al., 2018). Unrelated to POR, the planning phase was significantly lengthened due to COVID-19 restrictions which halted this research for one year. During the COVID-19 pandemic, contact was lost with one of the stakeholder groups and when conversations were reinitiated much of the trust had been lost and the relationship had to be re-established. In future studies, more time in the planning phase of research is recommended.
Maintaining relationships with all team members including stakeholders and patient-partners also took additional time but was essential. Patients-partners needed to be kept informed, they desired to be involved, and did not want to be token members of the team. Tokenism often occurs when researchers add patients to their team in order to meet organizational guidelines, but appropriate time is not taken to immerse the patient on the team (Brett et al., 2014). There is no minimum level of patient involvement for research to be labelled POR; however, patient engagement can be placed on a continuum from one-way input to shared leadership (Forsythe et al., 2019). The research team did not want to overburden the patient-partners; however, patient-partners were willing to put in time and effort to add value to the team. In the future, I would contact patient-partners more regularly and clarify throughout the research process their desired level of involvement. Keeping patient-partners and stakeholders informed was essential to maintaining relationships.
Extra money spent on POR included both paying for patient-partners time and additional expenses. Costs associated with including patients on research teams was commonly cited as a barrier. Patient-Oriented Research can be expensive due to increased costs of meetings and training patients (Domecq et al., 2014; Forsythe et al., 2019; Johnson et al., 2016). Academics and researchers are traditionally paid a salary to do research as part of their job; whereas, patients are most often not; therefore, funds must be allotted for patient-partner time. Another new understanding was the unique practical considerations that were necessary to have full patient-partner involvement. It is imperative that the patients’ cost of attending meetings (e.g., transportation, parking, childcare) are covered, along with providing a stipend for their time (Canadian Institute for Health Research, 2011). Paying for patients to participate in research activities is expensive but valued by patients (Hamilton et al., 2018). This study involved families from low-income settings; therefore, paying for out-of-pocket expenses was particularly important. For example, one of the patient-partners received a parking ticket while participating in a team meeting which was a significant financial burden for the patient-partner. Therefore, research funds were used to pay for this expense. Additionally, incorporating meals as part of meetings was important for some of the patient-partners and providing uneaten food to take home to their children helped support their family. In order to retain patient-partners, careful consideration of the challenges experienced by patient-partners and ensuring accommodations are essential.
What Could Be Done Differently?
When considering future POR opportunities, improvements to the research process should include: improved patient-partner engagement, and more focused patient-partner recruitment. Patient-partners could be more fully incorporated in all aspects of the research. In order to have meaningful involvement patients must be incorporated in several aspects of the research which may include identifying relevant topics, assessing research instruments, recruiting participants, participating in data collection, collaborating with the research team during data analysis, creating knowledge translation activities, and presenting knowledge translation activities (Brett et al., 2014; Domecq et al., 2014; Forsythe et al., 2019). Patient-partners were not included in the data gathering in part due to the need for researcher autonomy for a Ph.D. dissertation. Patient-partners expressed a desire to be part of conducting interviews and, in the future, this should be accommodated where possible. Considerations for alternative forms of interviewing such as having a researcher and a patient-partner co-interview need to be examined.
Another future consideration would be to ensure the patient-partner experience was a closer fit with the research. When patient-partners were initially recruited, the plan was to include children participating in a variety of sports; therefore, it made sense to include these parents whose children were involved in any sport with the support of charitable funding. In the end, karate was the only sport examined. The patient-partners involved were able to speak to the experience of living with low-income and participating in sport, but they were not part of the karate community and did not understand these particular experiences. Their ability to assist with recruitment was limited as they were not familiar with the families who have children participating in karate. Patient-partners can help inform researchers regarding successful dissemination (Brett et al., 2014; Forsythe et al., 2019). The patients added value to the research team; however, future studies should include patient-partners where the parents have children who participated specifically in karate.
How Did the Use of POR and Constructivist GT Shape this Research?
The substantive grounded theory Finding Belonging through Sport (Nelson et al., 2023) was created through the use of both constructivist GT and POR. Through the constructivist GT process, Finding Belonging through Sport was developed which was not obvious at the start of the research. The BSP was created through multiple interviews, analysis, constant comparison, and memo writing which is the constructivist GT process (Charmaz, 2014). A different methodology, without a focus on process, would have resulted in alternate findings and the basic social process of Finding Belonging through Sport may not have come to light.
Constructivist GT was the methodological framework that led to the BSP but POR created the initial direction and enhanced the confirmation of the resulting substantive theory. Patients set the initial direction towards social and emotional belonging and identified specific concerns about making friends and learning social skills. Patients were also consulted about certain aspects of the research, patient-partners and participants input led to the analysis being confirmed or refuted. The POR approach added more data triangulation to the already rigorous process of constructivist GT. The constructivist GT used constant comparison between the substantive theory and data ensuring that the substantive theory closely mirrored reality (Charmaz, 2014). Adding POR incorporated a method of comparison through patient consultation during data collection and analysis.
Conclusion
Researchers are recognizing the need to incorporate patients’ voices on their research teams but it can be a daunting task. There is a need to combine traditional research methodologies with new approaches which incorporate patient voices to maintain the rigour of classic methodologies with the democratization of research. Constructivist GT is a rigorous methodology which added to the POR approach and, conversely, POR enhanced many aspects of the constructivist GT research. Points of synergy between all forms of GT and POR included: Symbolic interactionism, pragmatism, finding a BSP, and many of the methods. Constructivism and relativism are unique to Constructivist GT and make this form of GT particularly suited to POR. However, there were tensions in the implementation of the methodology with the approach including: The use of preconceived knowledge, incorporating patients as researchers, sources of data, and the need for reflexivity. Changing how constructivist GT was conducted to include patient voices was challenging yet rewarding. There are many strengths to both constructivist GT and POR and together created a unique examination of the social and emotional benefits and barriers of traditional karate for children from low-income settings. In this research study, a POR approach enhanced the constructivist GT methodology and resulted in novel findings. Researchers need to continue to seek innovative ways to ensure that the research is rigourous and the voice of patients and stakeholders remains central.
Footnotes
Acknowledgments
We would like to acknowledge the Saskatchewan Karate Association and SaskSport. Also, special thank you to Christa Achen patient partner.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Saskatchewan Karate Association.
