PARTICIPATORY RESEARCH EVALUATION METHODS

This section describes, discusses, and compares three participatory evaluation methods: CBPR, participatory design (PD), and user-centred design (UCD). The comparison emphasises that CBPR is the only approach that includes a continuing partnership throughout the research and enables the researcher to engage as a trusted member of the research community, which in this case includes the intended users of MyHR, although not all partners may be intended users.

Greenhalgh et al. (2015) suggested that to reduce biases in the delivery of evidence- based practice, research should embrace the involvement of healthcare users, make systematic use of personally significant evidence, take a more humanistic view, and address unequal power dynamics in the research and support communities. These authors also emphasise that care must be taken not to conflate when adopting participatory methodologies, which could result in framing ‘person-centred’ through a research lens and reducing it to a series of results, the significance and context of which become lost, devalued, or overlooked.

Community based research is based on a participatory philosophy (Heron & Reason 1997). The principles of CBPR (Hills & Mullett 2000) can be seen in other participatory evaluation methods, such as PD and UCD(Nohr & Aarts 2010; Unertl et al. 2015). All three approaches (CBPR, PD and UCD) share the objective of incorporating the perspectives and needs of intended end users into health and health technology implementation. However, as illustrated in Table 4, there are differences between the theoretical foundations and community engagement across the research stages of CBPR, PD and UCD.

Iteration occurs during the course of the research in all three approaches (CBPR, PD and UCD), but CBPR is the only approach:

 that enables the researcher to engage as a trusted member of the research community;

 in which the community are the intended users for the technology but not all partners may be the intended users.

Table 4. Comparison of CBPR, PD and UCD

CBPR Problem Definition Study Design Needs Development Data Collection Data Analysis Results Dissemination Community x x x x x x Researcher x x x x x x

CBPR continued partnership development and maintenance activities

PD Problem Definition Study Design Needs Development Data Collection Data Analysis Results Dissemination Intended

end user Limited Limited

Community x x x x Limited Researcher x x x x x x UCD Problem Definition Study Design Needs Development Data Collection Data Analysis Results Dissemination Intended

end user Limited x Limited

Community x x Limited Limited Limited Limited

Researcher x x x x x x

In PD, the researchers usually control the research design and the dissemination of results, although the end users collaborate in research implementation (Nohr & Aarts 2010). In UCD, the researchers normally lead the entire effort from research design to dissemination of results (Ritter, Baxter & Churchill 2014). In contrast, CBPR is an inclusive research model that is defined by purposeful engagement among researchers and intended end users throughout all stages of the research (Israel, B et al. 2003). The level of engagement through CBPR can alter how health and health technology innovation is implemented and translated into wider practice (Unertl et al. 2015).

CBPR was identified as the most suitable research methodology for this research because of its collaborative processes that involve a community who are not professional researchers, while enabling the researcher to engage as a trusted member of the research community. The methodology acknowledges the unique

Veale 2000). This research was prompted by and important to the rural community and had the aim of combining knowledge and action to improve community healthcare provision and reduce health disparities.

From a methodological perspective, it has been said that knowledge created without the active participation of all partners can only be partial knowledge (Cook 2012; Somekh 2002). The principles of CBPR (Hills & Mullett 2000) are based on the assumptions that:

 genuine partnership means co-learning: academic and community partners learn from each other;

 research efforts include capacity-building: in addition to conducting the research there is a commitment to community partners’ learning;

 findings and knowledge should benefit all community partners;

 CBPR involves long-term commitments to effectively reduce disparities (Israel, B et al. 2003).

Adopting these principles provided the researcher and research partners with fundamental principles to guide actively the building and maintenance of trust- centred relationships toward the goal of successful experience of and engagement with MyHR. The level and nature of this relationship is a characteristic of other research approaches, but is a critical element of CBPR (Unertl et al. 2015).

People living with CCCs in a rural community became actively involved as a research community throughout the research; their experiences and understanding were reflected directly in shaping the research that describes and affects their lives. Recognition of the need to involve and gather first-hand knowledge derived from experience and facts guided by discussion, required researching with the community in a real-world context. This process assisted in the development and growth of trust- centred relationships, equity, capacity, and genuine partnerships between the research partners, the community, and the researcher (Israel, B et al. 2003; Unertl et al. 2015).

Facilitating research in a real-world context was considered necessary for building and sustaining trust-centred relationships, which recognised and addressed

communication barriers that may impact the research design, implementation, and analysis. Each contact with the partners and groups was regarded as an opportunity to establish commitment that could inform subsequent research decisions; this was consider important to sustain engagement. Adopting the principles of CBPR embraced the building of genuine partnerships and capacity, and effectively empowered rural community involvement in the development and delivery of digital healthcare provision.

Identifying with CBPR empowered the researcher to involve the community and reflect their subjective experiences of and engagement with MyHR. This participatory paradigm openly included and acknowledged those who affect and those who are affected by the topic of concern, incorporating their contributions, expertise, shared responsibilities and ownership. In this way the research approach for studying a community in a real-world context avoided power imbalances (Greenhalgh et al. 2015; Hills & Mullett 2000). Table 5, which is adapted fromGreenhalgh et al. (2009), provides a summary of the participatory paradigm and CBPR methodology explained as research characteristics. The research methodology is discussed in depth in Chapter 3.

Table 5. Research characteristics

Participatory Paradigm

Community based

participatory research The research characteristics

Subjective ontology (assumption about nature of reality)

Co-creation of socially useful artefact through negotiation and sense making

The exploration gathered the partners’ understandings and meanings by participation in interactive and cooperative one-to-one and group discussions in their world about their real-world experience of and engagement with MyHR Extended epistemology (assumption about the nature of knowledge) Knowledge is subjective and value-laden, and emerges through making, which is a social process requiring shared vision and understanding

During data collection, the partners cycled through iterations of action and reflection:

- Phase one, presented the concept of MyHR (presentational knowledge and propositional knowing).

- Phase two, the thoughts and experiences of MyHR,

began to accumulate (experiential and practical knowing)

- Phase three, the partners tested MyHR in their real world, reflecting on their experiences (practical knowing). The engagement with MyHR providing first-hand knowledge (experiential knowing) in relation to MyHR (propositional knowing).

Some partners also chose to share their personal experiences of their rural community through photography (presentational knowledge).

Using a thematic framework for data analysis allowed the data to resonate the value of an extended epistemology. Hills and Mullett (2000) remind us that the more consistent are the four ways of knowing, the more valid the evidence for practice

Axiology (what is of value)

Fitness for purpose, ownership, engagement discussion

Axiology is related to extended epistemology through practical knowing in each phase of data collection, which provided the partner and the groups with information engaging them in social participation: how to choose, how to be, and how to perform? This was enabling and was

considered personally and contextually rewarding, improving and changing experiences

Methodology (assumption about what methods will generate best evidence)

Developmental with a focus on social. Measures shared vision values and collaborative outputs

Using CBPR empowered the value of joint responsibility; multiple ways of knowing and more significantly, it recognised and valued the unique knowledge that a rural community contributed to the co-creation of new real-world experience of and engagement with MyHR.

Using CBPR allowed a vulnerable community to collaborate and contribute to research debates about the experience of and engagement with MyHR. It focused on a real-world issue, problem solving and change, which provided research evidence that is both contextually useful and relevant to wider establishments.