PARTICIPATORY PARADIGM

This section presents and discusses the participatory paradigm. The participatory research paradigm, depicted in Figure 3, comprises the characteristics of a subjective ontology, an extended epistemology, axiology, CBPR principles, and design based on involvement and co-operative relations between all partners.

Figure 3. The research paradigm

Paradigm Participatory Ontology •Subjective Epistemology •Extended Axiology •Practical knowing Method •CBPR Design •Research  techniques & tools  for data collection  and analysis

Guba and Lincoln (1994, p. 107) stated that a paradigm ‘represents a worldview that defines … the nature of the world, the individual’s place in it, and the range of possible relationships to that world and its parts’. They continue, discussing four differing worldviews: research positivist, post positivist, critical, and constructivist. These are based on their positions from ontological (‘What is the form and nature of reality and, therefore, what is there that can be known about it?’), epistemological (‘What is the relationship between the knower or would-be knower and what can be known?’), and methodological (‘How can the inquirer ... go about finding out whatever he or she believes can be known about it?’) viewpoints.

Both Mertens (2005) and Heron and Reason (2001) challenge these dominant research paradigms, suggesting a fifth worldview: a participatory paradigm that considers that reality is an interchange between the given universe, a basic reality, and the mind. Participatory researchers consider that interpretive research alone does not adequately address issues of social justice and marginalised people (Creswell 2013). They ‘believe that inquiry needs to be intertwined with politics and a political agenda’ (Creswell 2013, p. 9), and should contain an agenda for reform ‘that may change the lives of the partners, the institutions in which people work or live, and the researcher's life’ (Creswell 2013, pp. 9-10).

By adopting a participatory paradigm, this research acknowledged and valued the effect of each research partner’s background and experiences on the research by exploring and recognising the social world through the partners’ own perspectives (Mertens 2005; Ritchie & Lewis 2003). Systematically capturing personally significant evidence from a particular community was considered fundamental to the investigation (Greenhalgh et al. 2015). In the context of this research, this would maximise the chance that MyHR meets its important aim: to encourage people living with CCCs to engage with their digital health data, informing and improving their quality of care (van't Riet et al. 2001).

3.2.1 Subjective ontology

Ontology is an assumption about the nature of reality and what can be known about it (Greenhalgh et al. 2009; Guba & Lincoln 1994). In contrast to conventional research, which makes use of objective quantitative methods and claims to be value free, qualitative approaches place importance on subjectivity (Hills & Mullett 2000).

Subjective ontology is described by Abram (1996, p. 124) as ‘underneath our literate abstraction, [there is] a deeply participatory relation to things and to the earth’. Heron and Reason (1997, p. 5) talk about this as participatory, interactive and cooperative:

[To] touch, see, or hear something or someone, does not tell us either about our self, all on its own, or about a being out there, all on its own. It tells us about a being in a state of interrelation and co-presence with us.

The research’s participatory philosophy identified a subjective ontology, which required and guided the exploration to garner the partners’ understandings and meanings of their experience of and engagement with MyHR, in their world.

3.2.2 Extended epistemology

Epistemology is an assumption about the relationship between the knower and what can be known, the nature of knowledge (Greenhalgh et al. 2009; Guba & Lincoln 1994). Conventional science believes in a world that involves the knower adopting an impartial view in order ‘to discover how things really are’; this assumes that the knower and the known are separate, independent units that do not influence one another (Guba & Lincoln 1994, p. 108). However, a participatory paradigm requires an extended epistemology that recognises the requirement to equitably nurture partner researchers, those directly affected by and knowledgeable about the local circumstances that impact health (Horowitz, Robinson & Seifer 2009; Nohr & Aarts 2010). The subjectivity of an extended epistemology recognises and values the importance of the knower participating in the known, allowing the expression of nuance and context through an awareness of four independent and interdependent ways of knowing, how they interact, and the ways of changing the relationships between them. Figure 4 depicts extended epistemology and the four ways of knowing: experiential, presentational, propositional, and practical (Heron & Reason 1997, 2001).

Figure 4. Extended epistemology, four ways of knowing

The four ways of knowing are explained as:

Experiential knowing (experience) is participatory in nature, an actual meeting with

persons, places or things, for example

[Learning from a] direct encounter, face-to-face meeting: feeling and imaging the presence of some energy, entity, person, place, process or thing. It is knowing through participative, empathic resonance with a being, so that as knower I feel both attuned with it and distinct from it (Heron & Reason 1997, p. 6).

Presentational knowing (images) is present in experiential knowing, how

experiences are represented; for example, through images such as drawing, photographs, writing, dance, art or stories.

Propositional knowing (factual knowledge) is a conceptual awareness of something.

This type of knowledge can be expressed as statements, facts, or theories

Propositional knowing is knowing, in conceptual terms, that something is the case; knowledge by description of an, entity, person, place, process or thing (Heron & Reason 1997, p. 6).

Practical knowing (discussion) combines thoughts and experiences into action

(practice)

Practical knowing is, knowing how to do something, demonstrated in a skill or competence (Heron & Reason 1997, p. 6).

Praxis - the relationship of theory to practice

Before discussing the fourth characteristic of the participatory paradigm, axiology, the role of evidence-based practice for communities and the relationship of theory to

Extended  epistemology Experiential •learning from  enounters Presentational •learning from how  experiences are  represented:  images, art Propositional •learing from facts:  theory Practical •learning from skills  and competencies

phenomenon, is often considered something that is talked about in academic environments. This gives the impression that it stands alone, separate from day-to- day living. However, Lewin (1947, p. 149) suggests:

[T]here is nothing so practical as a good theory and the best place to find a good theory is by investigating interesting problems in everyday life.

This research cycled through iterations of action and reflection. It considered first- hand knowledge and facts in relation to practical knowing, providing praxis- generated evidence for future practice. Praxis, as a process, places practice within theory rather than applying theory to practice (Heron & Reason 2001). Praxis requires an iterative relationship between theory and practice, and is realised from experience and facts facilitated by discussion. Embracing the relationship between practice and theory in this way gave value to the research approach of studying a community in their real-world context to avoid power imbalances that may have suppressed the community’s voice (Greenhalgh et al. 2015; Hills & Mullett 2000).

3.2.3 Axiology

In addition to considering the three defining characteristics of a research paradigm suggested by Guba and Lincoln (1994); i.e., ontology, epistemology and methodology, Heron and Reason (1997, p. 10) suggest consideration of a fourth factor capturing the value question, ‘what is essentially worthwhile?’ Axiology within a participatory paradigm acknowledges human flourishing, the ‘process of social participation in which there is a mutually enabling balance within and between individuals, of autonomy, co-operation, and hierarchy’ (Heron & Reason 1997, p. 10). Human flourishing relates to extended epistemology through practical knowing: how to choose, how to be, and how to perform. It is considered a personally rewarding, improving and changing experience.

The intended outcome of the research was to achieve a better understanding of the experiences of and engagement with MyHR and the difference it could make in enhancing the health and wellbeing of a vulnerable community. Axiology encouraged human flourishing by social participation, cooperation, and collaboration, to gather the community’s experience of and engagement with MyHR, produce real-world evidence and inform digital health research about personal and community requirements for contemporary healthcare.

The participatory paradigm was perceived as:

 balanced, valuing the contribution that people and community groups and academic digital health research make in the development of knowledge about community practice;

 promoting collaborations between the community and digital health

researchers in the design and implementation of the research;

 fostering sustainable effort at a local level that guided the translation of research advances into improved understanding of digital health for all (Hills & Mullett 2000; Somekh 2002).