A participatory Action Research Study with Guyanese Women Living with Type 2 Diabetes in England

Literature on the self-management programmes originated from the work of Lorig who contributed to a large body of knowledge that focused originally on self-management of arthritis then extending globally to include chronic illness self-management (Lorig et al. 1998). Lorig et al. (1999) conducted a randomised controlled trial of 952 patients in California. This study is often referred to as one of the best examples of how true partnership between the public and the health care practitioners can be formed successfully. The outcome of this study led to a highly structured programme by trained volunteers living with long-term conditions teaching others to deal with common issues such as pain management, stress and daily coping skills. A further study by Holman and Lorig (2000) focused on partnerships as a prerequisite for effective and efficient care when managing chronic disease. Lorig et al. (2009, 2010) completed later studies on self-management of diabetes. Both of these later studies were still randomised trials, (Lorig et al. 2009; 2010) which examined community based management programmes and online diabetes self-management. The results showed an improvement in the patient’s self-efficacy and patient activation. However these claims were earlier disputed by Gately et al. (2007) who argue that increases in self-efficacy failed to produce the promised changes in self-management as the participants did not reduce the need for medical care by changing their behaviour.

Whilst Lorig’s randomised controlled trials (Lorig et al. 2009; 2010) have strengths in being pragmatic, measuring outcomes and cost effectiveness, when there is engagement with individuals in an interactive space, additional methodological approaches need to be considered to capture the individual’s voice.

Other programmes of self-management have been the Expert Patients Programme and in more recent years DESMOND (Davies et al. 2008; Skinner et al. 2006) previously mentioned in Chapter 2. These programmes are for people living with Type 1 and Type 2 Diabetes. The Expert Patients Programme provided the platform for individuals to develop knowledge of the condition including glycaemic control, weight and dietary management and psychological well-being. This structured national patient education programme emerged in the UK health policy (DH 2001; Donaldson 2003) to build an individual’s expertise to become educated and empowered in managing their long-term condition, the emphasis being on developing knowledge relevant to maintaining the individual’s health.

The Expert Patients Programme was part of the UK government commitment in 1999 to place patients at the heart of health care. Those with long-term conditions were encouraged to work in partnership with health and social care practitioners to obtain greater control over their lives. The programme targeted newly diagnosed and established patients. Wilson’s (2001) extensive review showed that the concept of Expert Patient has been problematic from the start because it ignores professional power and constraints, and assumes the individual’s compliance. Health practitioners continue to cling to the power of controlling information and dismissing the efforts that patients make to explain their condition (Wilson 2001).

A number of studies (Kennedy et al. 2005; Reeves et al. 2008) was conducted to evaluate Expert Patients Programme implementation. Kennedy et al. (2005) commenced the early evaluative work exploring the way the Expert Patients Programme was implemented by PCTs and identifying key barriers and facilitators to the implementation. This preliminary survey consisted of telephone interviews with key personnel in primary care sites where the Expert Patients Programme was initially piloted. 46 PCT leads and 19 trainers were interviewed. Secondary source data such as PCT websites and literature promoting Expert Patient were examined. The evaluation demonstrated initial success of the programme. One criticism was that BME groups and areas of high deprivation were disinclined to participate, increasing the potential for inequalities of care (Kennedy et al. 2005) and bias against their views. Further studies focused on predicting programme beneficiaries (Reeves et al. 2008) and cost effectiveness (Richardson et al. 2008).

In the UK, the DESMOND model launched in 2004 provided a structured group based approach that encouraged individuals to self-manage. This package has six hours community delivered teaching to groups of ten with accompanying relatives or partners (Cradock 2005). The DESMOND educationalists are trained members of staff, practice nurses or dieticians who emphasise that changing lifestyle is needed to manage diabetes. The course lasts for either one full day or two half days. Individuals attending the course share experiences and engage in games that explore the sugar, fat and content of foods (Cradock 2005). The main drawback of this programme relates to the lack of further follow up with the individuals following completion of the course.

Davies et al. (2008) and Skinner et al. (2006) incorporated an empowerment strategy based on social learning theory with an emphasis on patient involvement within the DESMOND programme. This particular model has shifted away from didactic medical education teaching to a more empowering approach encouraging individuals to manage long-term conditions by strengthening and improving self-management skills, self–efficacy and motivation. Pilot data has indicated the DESMOND programme for newly diagnosed individuals changed important health beliefs at three months.

A more recent study by Khunti et al. (2012) evaluated the effectiveness of the DESMOND programme for the newly diagnosed diabetic. This three year randomised controlled follow up trial showed that the six hour structured programme in self-management did not offer sustained benefits to maintain glycaemic control but noted some changes in the individual’s health beliefs. It was suggested by Khunti et al. (2012) that a programme of on-going education is required as patients may need further education and support to successfully manage their condition.

Whilst DESMOND has been a national programme, Stone et al. (2006) suggested that it has not necessarily met the needs of BME groups. In their study, Stone et al. (2006) implemented the DESMOND programme with Gujarati, Mirpuri, Punjabi, African and Caribbean individuals living in three cities in the UK using a collaborative action research approach. “Participants perceived cultural differences were mainly related to food” (Stone et al. 2006: 624) but other identified issues were that African and Caribbean communities wanted the DESMOND sessions to be relevant to them. Attitudes to exercise were discussed and attention drawn to the sedentary lifestyle amongst older people. Pictorial resources used received a positive response. Participants requested advice on cooking methods, portions and pressure to eat certain foods. Conclusions drawn from the Stone et al.’s (2006) study showed that education sessions with ethnically diverse groups need to be relevant and refer to foods consumed by each ethnic group when discussing cultural diets.

Another self-management concern associated with the DESMOND programme is the emphasis on a medical prescriptive approach that concentrates on compliance/adherence which could lead to poor diabetic control. This is the focus of the next section in this review.

Compliance/non compliance

A close examination of the literature (Stone et al. 2006; Khunti et al. 2012) on self-management revealed a medical prescriptive approach that emphasised compliance/adherence to directions provided by health care practitioners. The ‘self’ in self-management has been ignored and the person is objectified as the ‘patient’ (Koch et al. 2004). Compliance within this context has been defined as adherence by the patient to directions given by the prescribing physician, and good compliance has been considered as 80% adherence or greater (Keszthelyi & Blasszauer 2009). Hicks (2006:.560) viewed it as a “disposition to yield to or to comply with the wishes of others”. The individual abdicates responsibility for their care to the health care practitioner, just follows instructions and is rewarded for being the ‘good patient’.

Traditional models of diabetes care relied on individual compliance leading to poor diabetic control according to Macaden and Clarke (2010). Unfortunately the biomedical view of compliance often fails to recognise the individual’s voice in making decisions about their condition, therefore when treatment is either refused or not complied with they are perceived as exhibiting non-compliant behaviour. Keszthelyi and Blasszauer (2009) argue that from a medical perspective individuals who do not comply with the doctor’s orders are seen as deviant and requiring correction.

Earlier research on compliance has shown that neither the features of the disease, the referral process, the clinical setting nor the therapeutic regimen seemed to influence compliance (Anderson & Funnell 2000). Influences on compliance are individual’s beliefs about medication and medicine in general, their knowledge, ideas and experiences and those of family members and friends. Their attitude to the disease and the doctor patient relationship also need to be considered and dictates whether they comply with treatment or not (Wens et al. 2005).

Collaborative models of compliance have encouraged a paradigm shift to an empowerment collaborative approach described as a new vision of diabetes education (Anderson & Funnell 2000; Thomas 2004; Dunning 2005). This vision insisted that when people live with a long-term condition, they are given education, support, clinical care and monitoring in partnership with health care practitioners. Self-management is then enhanced according to Holman and Lorig (2006). Bordenheimer et al. (2002) argued that self-management is important when living with chronic illness because of the improved chances for a rewarding lifestyle from being educated about the condition to taking part in the care process. Self-management has been reported as enabling people to minimise pain, share in decision-making about treatment, gain a sense of control over their lives (Lorig & Holman 1993; Barlow et al. 1999), reduce visit frequency to doctors and enjoy a better quality of life (Lorig et al. 1998; Barlow et al. 2000). Despite the evidence of cost benefits and improved health outcomes, self-management programmes only reach a small number of people with chronic illness (Keysor et al. 2001).

It seems essential for me within this inquiry to adopt a person centred perspective on the concept of self-management based on the evidence acquired when researching alongside Guyanese women. Koch et al. (2004) further add to this person’s perspective and give guidance why it is important to take on board this concept when researching alongside women. They believe it is an active and dynamic process of learning, trying and exploring the boundaries created by illness, and it fluctuates as life and illness present new challenges (Koch et al. 2004).

Individuals with diabetes often consult complementary practitioners when self-managing due to the impact of the disease on quality of life and the possibility of severe complications (Spencer & Jacobs 1999). The next section considers complementary and alternative medicine (CAM) literature when self-managing diabetes.

Use of complementary and alternative medicine (CAM) in managing diabetes

The more familiar biomedical model of disease takes a reductionist approach and focuses on a single medical problem within the individual. This dominant approach is based on facts and aims to cure disease. Biomedicine often sees the mind as separate from the body, thus separating the ‘body’ from the ‘person’ (Greaves 2004). Consequently many individuals with diabetes will opt for alternatives such as CAM to self-manage their diabetes. They seek complementary therapies to lower blood glucose levels, decrease dosage of oral hypoglycaemic agents and decrease insulin resistance.

The term CAM is the general explanation that is given to a group of therapies, practices and approaches to health care that are found outside of conventional medicine (NLH 2005). The Cochrane collaboration also describes CAM as all such practices and ideas outside the domain of conventional medicine and defined by its users as preventing or treating illness, or promoting health and well-being. These practices complement mainstream medicine by contributing to a common whole and satisfying a demand not met by conventional practices.

There are noticeable differences between complementary medicine and alternative therapy. Complementary medicine supplements conventional biomedical treatment and includes therapies such as herbalism, aromatherapy, hypnotherapy, massage, acupuncture and reflexology. Alternative medical systems consist of Ayurvedic medicine and traditional Chinese medicine. The National Library for Health (NLH) (2005) suggests these systems provide alternatives to conventional biomedicine and include diagnostic systems and treatments for the full range of conditions impacting on global health and well-being.

Research in the field of CAM (Chi-Wai Lui et al. 2012) highlights that many individuals use CAM to cope with the daily challenges of diabetes and associated complications. A review of the literature relating to Guyanese use of CAM revealed no existing studies. However there are international studies (Hunt et al. 2000; Poss et al. 2003; Awah et al. (2008); Chacko 2003) that examine the use of CAM among BME groups living in Western and developing societies. They have used CAM such as home remedies, food remedies, herbs, healers and spiritual practices to treat their condition.

Two descriptive studies of Mexican American people living with Type 2 Diabetes (Hunt et al. 2000; Poss et al. 2003) explored complementary treatments for diabetes. Hunt et al. (2000) showed that in everyday practice, participants draw on a variety of complementary systems. They used herbs for controlling blood sugar and prayer to reduce stress. They saw medical treatment as the vehicle through which God would heal them. There was no evidence that they turned to traditional healers. They felt God worked through the clinician and medications, not in place of them. Poss et al. (2003) discovered in their study that the participants were taking both prescribed oral medication and injected insulin in conjunction with traditional Mexican folk remedies for Type 2 Diabetes. Several of the remedies used were composed of multiple herbs.

However a review of herbal medicine by Linde et al. (2001) showed there is limited evidence regarding the effectiveness of herbalism as practised by specialist herbalists who combine herbs with unconventional diagnosis. Linde et al. (2001) reviewed a range of research articles including those for lowering blood glucose. For some of the herbal preparations, they felt the evidence was promising but further studies are required to establish efficacy.

Awah et al. (2008) took a more sophisticated look with an ethnographic approach and revealed the complex web of understanding that influenced compliant behaviour within a group of individuals from the Cameroon with diabetes. Participants in this study displayed negative feelings towards biomedical care and treatment that comprise mainly of medication. They supplemented their visits to the health care providers with visits to traditional healers but realised that diabetes could not be cured.

The findings from Scott’s (1998) UK study on lay beliefs and management of diabetes among West Indians showed that prayer or invoked spiritual assistance was an important component of care in coping with the condition. A variety of complementary treatments were used alongside the biomedical system, such as bush teas, bitters, evening primrose oil, fresh garlic and garlic tablets, laxatives and water to ‘wash’ sugar out of the blood.

Chacko (2003) investigated the use of alternative therapies to manage diabetes in an urban population in Southern India. This small-scale qualitative exploratory study showed that the participants relied on biomedicine for treating diabetes but frequently used Ayurvedic medicine and folk herbal remedies in maintaining good health. Ayurvedic medicine within this context is based on Hindu philosophy and is a holistic and sophisticated system which encompasses balance of the body, mind and spirit as well as balance between people, their environments and the larger cosmos. Chacko (2003) believed on account of her findings that the use of local therapies and their effectiveness warrant further examination.

Manya et al. (2012) conducted a more recent small scale cross-sectional survey to establish the use of CAM among people living with diabetes in Sydney. The main aim of their study was to identify the prevalence and type of CAM usage. The results showed that individuals with chronic disease often believed in spiritual practices and frequently used CAM to treat diabetes but individuals born overseas were significantly more likely to use it.

While some CAM therapies have particular benefits for individuals regardless of ethnic origin, many continue to access and use treatments alongside the biomedical approach (Manya et al. 2012). The side effects can give rise to concern. Diabetes UK (2008) acknowledged that, whilst complementary medicines are popular, some had not been tested or regulated like conventional medicine. Spencer and Jacobs (1999) and O’Connell (2001) echoed these views and agreed that limited information existed regarding standardisation of preparation, correct dosage antidotes or risk warnings of herbal medicine. Yet CAM users have strong negative opinions about conventional medicine regardless of the risks associated with CAM. Some mistrust institutions and new technologies and view conventional medicine as impersonal. They believe CAM has an important role to play in the management of their condition (Manya et al. 2012).

In this chapter I have reviewed the literature relevant to the research question. Only Tillin et al. (2012) commented on the increase of Type 2 Diabetes among women from the BME communities. Whereas three of these studies concentrated on the wider population in the UK and one study focused primarily on White Caucasians.

The literature identified the increase in the ageing population, obesity, unhealthy diets and lifestyle changes which have led to an increase in Type 2 Diabetes especially those who may have specific complications for example hypertension. In Guyana the age range for developing Type 2 diabetes is much younger and this is highlighted also in Back et al. (2012) who identified a much younger Indo Guyanese age group with Type 2 Diabetes living in New York. It is highly significant to have included this study in this literature review because Guyana has a large Indo Guyanese population who migrated to the UK, Canada and America. However due to the paucity of research on participants in this inquiry, reliance is placed on policy that focuses on other BME communities in the UK.

The lived experience of individuals with long-term conditions is a distinct area of research which gives insight into how they cope and give them a voice to talk about their experiences of living with the long-term condition. The literature on various programmes of self-management such as the Expert Patient and DESMOND showed that these programmes are under-utilised by BME communities hence the inclusion in the review.

The literature identifies psychological issues such as depression that are largely unrecognised among BME communities with Type 2 Diabetes. The studies have shown that tools used to diagnose depression may not be culturally sensitive or appropriate for the different ways psychological symptoms are manifested.

The review shows health care practitioners/professionals play a key role in helping those from BME communities cope with long-term conditions, but need to work in partnership with them. The literature indicates that they need to learn more about BME communities’ CAM beliefs and practices alongside the biomedical approach and recognise the cultural importance of diet. Moving away from the prescriptive compliance model to an empowering and collaborative approach enhances self-management strategies particularly in the BME communities.

There is definitely a gap in the literature regarding Guyanese and Type 2 Diabetes as I previously identified only one research study pertaining to this BME group. There is limited information about them as a BME community and tenuous links are made with African Caribbean and South Asian communities when in reality Guyanese as a multiracial group comprises many races. The race profile of Guyana is discussed in the context chapter. Therefore to fill the gap that is missing from the literature and to conduct a study that I feel would be relevant and add to the body of literature about Guyanese, I decided to explore with Guyanese women from a BME community who migrated to the UK during the 1950s, 1960s and 1970s, their experiences of living with Type 2 Diabetes. That particular time span was chosen as the primary influx of Guyanese to the UK occurred during that time period.

To consider the gap that current studies have largely ignored, the research aim and objectives are presented below:

To explore with Guyanese women living in the UK their experience of living with diabetes.

To give voice to the stories of Guyanese women.

To explore their experiences living with diabetes in the context of their Guyanese background.

To facilitate a participatory action research group and in collaboration with participant women explore self-care diabetes trajectories.

To consider ways ‘we’ (women and researchers) can initiate changes at an individual level and/or within the Guyanese community living in England.
In the next chapter, the focus is on the philosophies and other approaches that drive this inquiry. My position as a researcher, and assumptions made in developing the theory will be debated.

Chapter 4

Principles Guiding this Participatory Action Research Inquiry

 
In this chapter, I provide a rationale for choosing PAR as a methodological approach to give voice to Guyanese women with diabetes. I highlight the principles and philosophies underpinning this PAR inquiry. The philosophies include Montero’s (2000) explanation of social reality, Heron and Reason’s (2006) discussion on knowledge creation, Koch and Kralik’s (2006) participative worldview, Habermas’s (1972; 1984) social theory of communicative action that assumes to advance the goal of human participation strengthened by Berger and Luckmann’s (1991) social construction of knowledge. Then I cover a range of action research models including those operating without participation as a central component. Finally I argue for a research approach in which storytelling and participation are central. I then describe the principles that will guide this inquiry.

Positioning of the PAR researcher

I am a Guyanese woman who wants to research alongside Guyanese women, acknowledge each woman’s individual experience, give them a voice and recognise aspects of the women’s experiences that may not be explored by other methodologies. These women, like me, have experience of migration and a colonial past and I feel our voices as Guyanese women living in the UK have not been heard. My participative world view had been developed as a result of my work as a community psychiatric nurse in the 1980s with individuals, especially women, with mental health problems and championing their cause for improved community mental health services. In addition, I developed a particular interest in feminism when I completed a Women’s Studies Master’s degree in the early 1990s. “Being heard and given a voice” were phrases commonly used and I firmly believed in the feminist slogan ‘personal should be made political’. I believe in equality for women which became another slogan for me.

Although I was born in a former British colony, I had not fully appreciated the effects of colonialism or post colonialism on the individual living in a colony and the impact it can have on an individual’s identity. I gradually became enlightened by reading the literature by theorists of post colonialism such as (Said 1978 and Spivak 1990) who have contributed to my understanding of the period after colonialism. There is already some discussion on the terms colonialism and post colonialism in Chapter 2 but I feel it is important to disentangle what happens to an individual from a former colony when they migrate to the ‘mother country’, and the impact that this can have on their lives. The effects of colonialism do not cease because the transportation of indentured labour and slavery happened in the past but continue to affect the group in various ways, for example, national identity. Macleod and Bhatia (2007) argue that all postcolonial societies are still subject in one way or another to subtle and hidden forms of colonial domination.

One way of trying to resist this domination is to develop a national identity but I particularly liked the seminal work of Childs and Williams (1996) that suggests it is difficult to shed the colonial identity and develop a national identity after colonial rule. They suggest individuals ask questions such as “who are we” when trying to develop an identity, the formation of which should be encouraged either by writing or telling one’s history. Telling one’s story is similar in some respects to telling one’s history because it begins with a story of self that includes expressing feelings of national pride and identity (Childs & Williams 1996). Storytelling therefore became my rationale for selecting PAR that concurred with my belief of storytelling as a vehicle for human encounter and communication. I was acutely aware that Guyanese people liked telling stories so felt this approach would suit them as a BME group. I wanted them to tell their stories of living with Type 2 Diabetes and encourage them to feel fully involved with this process so that we shared a commitment to collaborate and create realistic and culturally sensitive knowledge.

Over a period of time, I have become aware of the contribution feminism has made in empowering women to collaborate in research and increase their understanding of how they can be oppressed in a patriarchal society. Feminism gives women a voice to air their views and opinions in a public arena. Guyanese women as a group have not had the opportunity to talk about their lives or their diabetes; therefore my aim in this inquiry is to empower them to tell their stories, share their experiences with each other, produce knowledge and any action they feel is beneficial to them.

The key feminist writers who have influenced my thinking are Reinharz (1992), Wilkinson (1998), Olesen (2005) and hooks (2000) who have all refused to accept theory and research that devalues women’s lives and experiences. They believed that feminist projects put the spotlight on women to make them more visible. Olesen (2005) proposed that feminist research generated new ideas to produce knowledge for actions or further research questions about oppressive situations for women. It seeks a methodology that supports research leading to social change or action beneficial to women (Olesen 2005). However, I particularly favoured the work of bell hooks regarding the way she felt white feminist writers have marginalised the voice of non-white women in society. hooks (1984; 2000) reminds us that some feminist writers have largely ignored the plight of non-white women and have not necessarily devoted the time and space for their interests and needs. In hook’s (2000) text she analysed the challenging issues that feminists face and demanded alternatives to a patriarchal, racist and homophobic society.

In more recent years, feminism has merged with PAR to form feminist participatory action research (FPAR) (Maguire 2006; Reid 2004; Reid et al. 2006).This advocates that all women must be involved in all stages of the research process including interpreting and acting on the results. Maguire (2006) gives a different perspective and is more inclusive of all women in FPAR. However; it is a fairly new branch of feminist research. Maguire (2006) proposed that FPAR catered for all female groups hence the attraction for me but this approach will be discussed later in this chapter. It is difficult to escape the feminist influence in this inquiry but I need to acknowledge that each Guyanese woman in this inquiry is an individual and the intention is to give them a voice and justify why women have been chosen (see Chapter 2).

As a researcher I need to commit to honouring the participants’ lived experience and ensure that the collaboration between us is genuine (Reason 1994). Doing any form of participatory research inevitably changes you, sometimes painfully, sometimes in exciting and sustaining ways (Gatenby & Humphries 2000). I therefore need to create a space for mutual reflections with the participants as the basis for action (Reid et al. 2006). I also need to consider how a shared Guyanese/English background with the participants in the inquiry has the potential to influence data generation and could potentially make me blind to difference. This influence will be discussed in more detail in Chapter 7.

Action Research

Historically action research can be traced back to the nineteenth and early twentieth century (Masters 1995). Action research is known by other names including participatory research, collaborative inquiry, emancipatory research, action learning and contextual action research, but all are variations on a theme. A more succinct definition by Reason and Bradbury (2006: xxii) is:

‘Action research is ... primarily a liberationist practice aiming to redress imbalances of power and restoring to ordinary people the capacities of self-reliance and the ability to manage their own lives – to ‘sharpen their minds’. The primary issues are about creating change and influencing policy decisions ... and for some is primarily a form of practice or for others it belongs to knowledge generation’.

Action research is separate from other types of research in that its focus is on turning the lay people involved into researchers; Reason and Bradbury (2006) assert that people learn best and are more willing to apply that learning when they do it themselves. Action research has a social dimension as the inquiry takes place in real world situations and aims to solve real problems (Reason and Bradbury 2006).

Specific historical and philosophical influences originate from the Science in Education Movement of the 19th/20th century in which the scientific technical method of action research was applied to education, especially the work of Boone (1904) and Buckingham (1926). Other known proponents of action research were Collier (1945) and Lippitt and Radke (1946) pioneering authors who were social reformists. In the 1940s, the theories of Lewin, a German social and experimental psychologist now considered the father of traditional action research, encompassed the concepts and practices of Group Dynamics (Lewin 1947); Field Theory (Lewin 1942) and T-groups (Lewin 1947). The growing importance of labour-management relations led to the application of action research by Lewin in specific areas of organisational development, quality of working life and organisational democracy. Lewin (1946) described action research as a series of spiral steps composed of a circle of planning, action and fact finding regarding the result of the action. Trist (1981) was another contributor to the field of action research from the post-war era. He was a clinical psychologist who became a founder member of the Tavistock Institute of Human Relations and was influenced by Lewin who was also a member of the institute. Trist engaged in social research for repatriation of German prisoners of war with their serious emotional problems in reconnecting to civilian life.

Contextual action research, also referred to as action learning, is derived from Trist’s work on relations between organisations. Both Lewin and Trist emphasised direct professional-client collaboration and affirmed the role of group relations as a basis for problem solving. Both were proponents of the principle that decisions are best implemented by those who help to make them. Educational action research has its foundations in the writings of Dewey, the American philosopher of the 1920s and 30s who believed that professional educators should become involved in community problem solving (Dewey 1929). Practitioners of this form of action research focus on the development of a curriculum, professional development and applying learning to a social context.

Action research within this earlier context focussed less on the collaborative and participatory nature of research (Lewin 1946). PAR, or co-operative inquiry which is another name for participatory action research, changed that narrow focus of the earlier perspectives. PAR differs in relation to other variations of action research but there are similarities because the word ‘action’ is common in all variations. Action denotes learning by doing - when a group of people identify a problem, do something to resolve it, see how successful their efforts have been and if not satisfied, try again (Koch 2006). The strength in PAR lies in the collaborative process between researcher and participants (Wadsworth 1998; Kemmis & McTaggart 2005; Kidd & Kral 2005).

What is participatory action research (PAR)?

Participatory action research (Baum et al. 2006; Dick 2004; Reason & Bradbury 2006) is used in developing countries and a range of other settings where the focus is participation of all stakeholders, emancipation and self-determination toward reform. Koch and Kralik (2006) sum up PAR as:

a social process where building relationships in order to research with participants is crucial

engages people in examining their own knowledge (understandings, skills and values)

practical

collaborative

reflective as it helps to investigate realities in order to change them

There are similarities between the Koch and Kralik’s (2006) and Kemmis and McTaggart’s (2005) approaches, as each interactive step of the PAR process is taken collaboratively with the participants. Relationship building is central to the process and often requires extended time in the field. PAR approaches share some commonalities with each other where researchers aim to reform, improve, remodel or restructure a situation. PAR can provide participants with the means to take systematic action in resolving specific problems, setting the agenda for discussion, prioritising issues pertinent to group needs and deciding on actions (Koch & Kralik 2006). Koch and Kralik’s (2006) PAR approach being used for this inquiry employs collaborative storytelling and group processes interchangeably. Consequently I remain firmly committed to utilising this participative methodology with Guyanese women living with Type 2 Diabetes who have largely been absent from producing dominant forms of knowledge.

Commonalities in participative methodologies

Heron and Reason (2006) capture what I believe participative methodologies have in common when they talk about co-operative inquiry. They describe this type of action research as a way in which all participants work together as co-researchers and as co-subjects in an inquiry group. The emphasis within this kind of inquiry is to research with people and not on people.

The concept of ‘participation’ is a core component in any participative methodology and it is essential that participants decide the agenda and actions relative to the situation or practice, and, in collaboration with the researcher, work towards ‘reforming, improving, re-modelling or restructuring (Koch & Kralik 2006). It is important that researchers, in partnership with communities, are clear about the level of participation that is present and where the power lies. Arnstein’s (1969) seminal work laid the foundation for this form of community participation and promoted user involvement that became a bench mark for describing and evaluating participatory activities. Arnstein (1969) suggested that there are different levels of participation, which she likened to a ladder with a series of steps/rungs (see Figure 2.) that citizens or users within controlling organisations try to move up whilst making decisions. It demonstrates that decision making is not an easy process unless true partnership takes place. ‘Citizen control’ is at the top of the ladder followed by delegated power and partnership. Citizen power can influence the decision making process but true partnership takes place when citizens hold power through shared decision making. Arnstein (1969) makes a clear distinction between citizen power, engagement and tokenism. Tokenism includes placation, consultation and informing where in a one way flow of information and communication, citizens have a voice but no power to make decisions. The final steps of therapy and manipulation are grouped as non-participation with the aim of educating citizens. Arnstein (1969) reminds us that participation is about power and control and she believed that it could be applied to any situation where participation is key.

Citizen Control	Citizen Power
Delegated Power
Partnership
Placation
Consultation	Tokenism
Informing
Therapy
Manipulation	Non Participation

Tritter and McCallum (2006) are critical of Arnstein’s (1969) ladder because they feel that the sole measure of participation within this user involvement model is based around power to make decisions and seize control when engagement is required. However failure to differentiate between method, category of user and outcome is missing from the model. Tritter and McCallum (2006:162) believe “Arnstein is vague about the methods adopted to involve users and see no relationship between the aims of involvement exercise, users who participate and the methods adopted to involve them”. It appears that its application to health care can be problematic due to its failure to meet the needs of service users as it does not reflect the various forms of participation required for decision making in that setting.

In my reassessment of the participation process, I refer to Arnstein’s (1969) ladder due to its user involvement and the need to consider the different degrees of participation when individuals are involved in a decision-making process in PAR. I have given some consideration to the views held by Tritter and McCallum (2006) who consider that Arnstein’s model is problematic when applying it to health related decision-making. However, I believe Arnstein’s ladder provides a good framework for checking the degree of participation. The literature suggests that the PAR process can empower individuals to make decisions because it breaks down boundaries between the researcher and the researched, allowing participants to drive the research process and explore situations pertinent in their lives. Participants make decisions about the research process but it can take time to learn to trust themselves, the researcher/facilitator and the PAR process (Koch & Kralik 2006).

Feminist participatory action research (FPAR) integrates participation with feminist theory and research (Reid 2004). I have already made reference to feminism earlier in this chapter but it is important to mention it in this context because of its appropriateness in working with female marginalised groups. Maguire (2006) identified that early participatory researchers failed to include the insights of feminism into action research. Maguire (2006) has been critical of the male orientation of PAR in which women and gender issues have been ignored, minimised or marginalised. Instead, those using FPAR consider the needs of women who have been traditionally silenced. FPAR is committed to making women’s voices more audible through the facilitation of ordinary talk; however Reid (2004) identifies that both feminism and PAR share the mutual cycles of reflection and critical reflection.

Recently Reid (2004) and Reid et al. (2006) demonstrated the way in which a FPAR framework was developed and their model included five principles that can be incorporated into the research process: inclusion that considers women’s experiences as central; true collaboration with participants identifying who is or is not participating; individual and collective action to improve the participants’ well-being; social change that remains poorly understood but aims to redistribute power to participants’ communities and researcher reflexivity that advocates openness and transparency regarding the choices made throughout the study. I find these principles appealing and considered them in this inquiry.

There are some similarities with FPAR and PAR as Gatenby and Humphries (2000:90) postulate: at first glance, the ideals, and methodology of PAR seem to fit well with the values, theoretical and practical concerns espoused within most feminist research, particularly that which emphasises emancipation, participation and collaboration.

The main difference I have observed between PAR and FPAR is that PAR involves both women and men in its collaborative practice whereas feminist participatory action researchers research alongside women almost exclusively. Despite the difference in emphasis between PAR and FPAR, I am committed to Koch and Kralik’s (2006) version of PAR, as previously discussed, precisely because its storytelling component is culturally relevant for this group of Guyanese women who have not yet had a voice.

I recognise that the PAR process requires me to build and work towards sustainable relationships with my participants. These are skills and attributes that I need to learn in order to become a facilitator/researcher of this inquiry. Being Guyanese will assist relationship building. I wanted to initiate a research project with Guyanese people living in the UK because diabetes appears to be a serious concern for this BME group (Ramsammy 2011). I am eager to embark on a PAR inquiry that will contribute new knowledge using a collaborative research methodology having participation at its core.

Specific theorists (Heron & Reason 2006; Montero 2000; Koch & Kralik 2006; Habermas 1972; 1984 and Berger & Luckmann 1991) have guided my knowledge and understanding of the philosophical underpinning of the PAR approaches. I approached this part of the PhD as a novice having to grapple with a range of theories and viewpoints to understand the way knowledge is created in participatory inquiries. My reading of these theorists’ work has helped me to question my assumptions and to explore the way in which knowledge is generated in PAR. Guba and Lincoln (1989) laid the foundation for me in defining what is meant by the philosophical terms ontology and epistemology. They suggest that ontology refers to the person’s social reality about what exists and questions “What does it mean to be a person?” Epistemology refers to theories of knowledge but similar questions are asked for example, what can be regarded as knowledge and how is it created (Guba & Lincoln 1989)?

Montero (2000:135) provides some of the answers in clarifying that “the ontological perspective in PAR has the capacity to accept the other and “it is only by accepting otherness of that person that the full possibility of a dialogue, a fundamental condition for PAR is established”. Montero (2000) further discusses the meaning of social reality in PAR and identifies how the different types of change occur when an individual views the world. Her perspective on the participatory character in PAR leads to several types of change. Montero (2000:135) claims “this entails a change in how society is viewed; its compositions, its divisions, its institutions are subject to a different look from different perspectives. New looks, sometimes critical, sometimes cynical, sometimes disgusted, sometimes despaired and sometimes optimistic emerge “.

Heron and Reason (2007:366) introduced the “epistemological dimension of human knowing in the inquiry which involves: group members working together through cycles of action and reflection, developing their understanding and practice by engaging in what we have called an ‘extended epistemology of experiential, presentational, propositional and practical ways of knowing”.

Heron and Reason (2007) summarises these four different ways of knowing as participative epistemology. Experiential knowing occurs when there is a direct encounter, for example a face-to-face meeting. Presentational knowing emerges when symbols of graphic, plastic, musical and verbal art forms are used which articulate our experience. Propositional knowing is achieved when the individual is able to master theories and concepts. Finally practical knowing is based on knowing how to complete something, either a skill or competence, which leads to a sense of accomplishment. Heron and Reason (2007:367) argue that these “four ways of knowing will be more valid if they are congruent with each other: if our knowing is grounded in our experience, expressed through our images and stories, understood through theories which make sense to us and expressed in worthwhile action in our lives”, this epistemological perspective will give me an insight into how knowledge can be created in PAR. I therefore need to listen to Guyanese women’s voices and anticipate that they will bring new knowledge to this inquiry.

As my intention is to use Koch and Kralik’s (2006) PAR methodology, it is important to note the way in which that has influenced my thinking. Koch and Kralik (2006) share a similar participative worldview that drives their PAR processes even though they hold different positions. Koch was guided by Guba and Lincoln’s (1989) philosophy in ‘Fourth Generation Evaluation’ that requires all stakeholders to have a say in the services and structures that impact on their lives, whereas Kralik holds a strong feminist perspective. Both authors believe that people should be enabled to construct and use their own knowledge (Koch & Kralik 2006). These authors drew on Freire’s (1970) work in that empowerment of people is desirable through the process of constructing and using their own knowledge. In this way facilitators can assist participants in identifying their own needs and formulating their own strategies in meeting those needs (Koch & Kralik 2006). Freire was a leading and inspirational educationalist in South America in the 1950s who researched with disenfranchised students and participants to place life-transforming capabilities in their hands. His research falls into the category of critical emancipation that provides evidence from a social perspective that working collaboratively alongside people enables them to develop a new awareness of self which can then respond to change (Freire 1970).

Another critical theorist that influenced my understanding of knowledge creation is Habermas (Habermas: 1972; 1984). His theoretical thinking is focused on emancipation and, like Freire, Habermas’s work on social theory advances the goals of human participation, communicative action and entails a theory about dialogue as individuals meet in conversation. Habermas argued for the democratisation of research and wanted to encourage those excluded from the process to have a voice. Consistent with Habermas’s worldview is that PAR is motivated by a desire to secure authentic information (new knowledge) about people and situations that embraces experience as a source of legitimate knowledge.

It is important to understand the way in which individuals construct knowledge. I was influenced by social constructionists and believe their standpoint is congruent with my participatory worldview. Stainton-Rogers (2006) suggests that social constructionism is an epistemology that focuses on the individual as a socially constructed being and on the processes of social interaction by which individuals make sense of the world. The social constructionist approach views knowledge as being constructed through people’s meaning making. This viewpoint accepts that there are multiple realities and knowledge according to Stainton-Rogers (2006), who raises a number of questions about knowledge; what does it do; how can it be used – by whom and to what ends; whose interest does it serve; what does it make possible; what counts as valid knowledge and what other discourses are referred to?. I chose to build on Stainton-Rogers’s questions about knowledge and was led by Berger and Luckmann’s earlier classic text (1991), which entailed an explanation of social constructionism.

Berger and Luckmann (1991) define the nature and construction of knowledge as created by interactions of individuals within society. These interactions can take the form of language where there is shared meaning and understanding and can provide a means of constructing the way the world is experienced. The Guyanese women will make sense of their world via the construction of their experiences of living with Type 2 Diabetes. They will make sense of their experiences of living with a long-term condition through their storytelling and collaborative interactions with each other and the researcher within the group sessions. Their stories will be social constructions.

Whilst I have included philosophies underpinning critical theory and social constructionism as key influences in this inquiry, I recognise that there could be a tension between these two viewpoints. Denzin and Lincoln (2003:249) propose that “critical theorists seek to produce practical, pragmatic knowledge that is cultural and structural, judged by its ability to produce action”. In contrast social constructionism considers meaning-making /sense making activities within a dialogue that shapes action (or in action) (Denzin & Lincoln 2003). I feel the call for action is less fixed in social constructionism whereas critical theorists have always advocated varying degrees of social action (Lincoln & Guba 2003).

In summary, knowledge creation in the PAR process is complex. However PAR enables individuals to examine their own knowledge, skills, and values, and as a facilitator, I can stimulate critical reflection. As participants critically reflect on their knowledge, enhance or develop the ability to interpret that information themselves they may seek out actions in the social world (Kemmis and McTaggart 2005). As knowledge is shared, reflected on and discussed with others, lives may change as a result. When space and time is given to individuals to participate and reflect on their experiences, actions may result. In the next section I present a rationale for selecting Koch and Kralik’s PAR process.

Rationale for selection of Koch and Kralik PAR process

My rationale for selecting Koch and Kralik’s research process is its distinctive storytelling as part of the PAR methodology. I knew little about PAR prior to a chance meeting with Professor Koch in 2009. My PhD research question seemed to match this methodology as I heard about a programme of research with people living with a chronic illness that used PAR. I heard that Koch and Kralik’s (2006) adaptation of PAR is based on Stringer’s (1999) ‘look, think and act’ analytical framework. This PAR process quickly became the favoured one for my inquiry researching alongside Guyanese women living with Type 2 Diabetes. Koch and Kralik’s (2006) version of PAR comprises two interactive phases: the storytelling component and the PAR group process. In addition the cyclical nature of the PAR process promotes reflection and reconstruction of experiences and stories that can lead to enhancement of individuals’ lives either as an individual; community or both.

Storytelling in PAR

As previously mentioned the combination of storytelling and the PAR group components used in Koch and Kralik’s methodology concurred with my belief that this process would be culturally acceptable to Guyanese women. I viewed storytelling as a vehicle for human encounter and communication. In my own experience, I was acutely aware that Guyanese people liked telling stories so felt this approach would suit them. I wanted them to tell their stories of living with Type 2 Diabetes and encourage them to be fully involved with this process.

After reading the topic of storytelling (Mattingly & Garro 2000; Frank 1997) I understood how a story emerges through the pull and push between the storyteller and the world in which it is told. Stories are products of language; so many versions can be constructed and reconstructed to meet the situations we encounter. We tell stories with the guidance of memory and future hopes and fears (Holloway & Freshwater 2007). Koch and Kralik focus on the experience of chronic illness and understanding and consider how individuals incorporate the symptoms and consequences of their illness into their lives through storytelling. Storytelling seemed appropriate for this type of inquiry with Guyanese women with Type 2 Diabetes which I read about in more than 40 separate studies for example, (Koch 1998; Koch et al. 1999; Koch & Kelly 1999; Kralik et al. 2004, Koch & Kralik 2001; Koch et al. 2002; Visentin et al. 2006). These authors had produced rigorous, methodological guidelines for researchers when using storytelling.

PAR group process

In addition to one to one storytelling, the researcher researches alongside participants in the PAR group sessions. As the researcher, I would adopt the role of facilitator in the PAR group process (Koch & Kralik 2006; Stringer 1999) by assisting participants to make their experiences accessible for reflection, discussion and reconstruction. I understood that PAR groups create movement. In terms of process, I was reminded that whilst researching, the researcher asks: “what is happening in this group, what has the participant chosen to talk about and what is important here?” These data are recorded, analysed concurrently and all observations are provided to participants for feedback. The learning process can be observed in what people do and how they interact with each other, what they mean, value and the language used. Facilitation is important in this PAR group process because participants are encouraged to take control, decide the agenda and take ownership of the results. The PAR process and role of the facilitator is discussed in more detail in Chapter 5.

I have clearly demonstrated my rationale for selecting PAR based on the work of Koch and Kralik (2006). The principles guiding PAR will now be interrogated. These principles of social justice, social equity, and freedom of speech and a strong awareness of human rights resonate with my own beliefs and values. The principle of facilitation is also fundamental in PAR research as participants are encouraged to play an active role in the research process and this speaks to my feminist leanings.

Evaluation and rigour in PAR

It is important for me to evaluate the PAR process as a researcher, demonstrate a rigorous process and articulate what has been learnt. During the PAR process, evaluation criteria demonstrate success when participants express a strong sense of self development and evolution in their practices. They show an increased understanding of their personal situation and the group initiates action leading to reform. Rigour may be evaluated by the willingness of participants to participate and researchers examine what happens whilst researching by recording and analysing their reflections as a data source (Koch 1994; 2006). Data generated are returned to the participants for their validation and input. The feedback cycle in PAR ensures that any issues identified by participants are acknowledged so misunderstandings are corrected and refinements made. For research outcomes to have credibility and to be meaningful to others, the research pathway needs to be transparent and available for scrutiny.

For the findings to be valid and reliable, I need to demonstrate a clear audit trail. The research trail is a set of reasoned decisions about questions to explore and those to abandon, what to include and what to leave aside, what direction to take or not take (Koch 2006). To consider whether PAR’s work is rigorous, it is necessary to ask if the inquiry is accessible, makes a difference and is sustainable. Rigour in PAR may be evaluated by the willingness of the participants to act. These are issues associated with the quality of the research and as Koch and Kralik (2006) point out rigour and quality of PAR are co-dependent which is discussed in Chapter 5.

Principles guiding PAR and this inquiry

Earlier I identified Reid’s (2004) principles and will consider them in order to guide this inquiry. They include inclusiveness, collaboration, fostering collective action toward social change and an awareness of power distribution. I will adhere to the researcher’s reflexivity that advocates openness and transparency regarding the choices made throughout the inquiry.

In addition, I will be guided by Koch and Kralik’s principles outlined in their 2006 text. They embrace social justice, social equity, and freedom of speech and an awareness of human rights. The methodology selected provides a democratic and collaborative research approach involving facilitators/researchers’ and participants’ cultural practices equitably. Cultural sensitivity demands that the researcher spends time in the field to understand specific cultural practices and to be sensitive to the diverse ways that culture is demonstrated and celebrated. Koch and Kralik’s principles resonate with the way I interact with people as a mental health nurse and nurse educator as I also faced inequality and unfairness in my personal life as a Guyanese person and a woman. I empathise with the participants in the inquiry on two levels, firstly as a woman from a BME community and secondly being given a voice in this inquiry. I recognise the need for these principles where social justice is based on giving individuals fair and equal treatment (Butts & Rich 2005). Social equity and equality are interchangeable terms with similar meanings, but social equity as a concept generally reflects fairness and justness based around moral values according to McSherry (2013). I believe that being democratic is associated with freedom for all and a belief in a system that upholds freedom in terms of speech, human rights, and equality. The Human Rights Act 1998 sets out fundamental rights and freedoms for UK individuals. I feel core principles such as dignity, fairness, equality; respect and autonomy protect individuals in controlling their own lives and are enshrined in the PAR approach due to its collaborative process between the researcher and the participants.

Providing the participants with space, time and a voice assisted them in giving meaning to living with Type 2 Diabetes. This enabled integration of the theories in this inquiry. Social constructionism helped them to make sense of their experiences of living with a long-term condition through their storytelling and collaborative interactions with each other and the researcher. Critical theorist Habermas (1972; 1984) encouraged those excluded to have a voice. In this context it is the Guyanese women as they talk about their experiences of living with Type 2 Diabetes. Montero (2000) emphasised the changes that can emerge when individuals view the world. A group action project to produce a recipe book provided the initial focus but other unintended outcomes arose as the women adopted a healthier mode of eating and made significant lifestyle changes in keeping with the Koch and Kralik’s (2006) participatory nature of PAR. The spoken word and the ongoing support offered to each other are significant as the women continue to work through cycles of action and reflection.

Conclusion

In this chapter I have provided a rationale for selecting Koch and Kralik’s PAR methodology. Storytelling is appropriate as it will enable me to listen to Guyanese women’s voices. I suspect that their lives have been interrupted by diabetes and together we can work collaboratively through cycles of reflection and action leading to reform. I share the Koch and Kralik’s (2006) participatory worldview for emancipation and collaboration and have taken on board the democratic principles of social justice, social equity, freedom of speech and human rights. I have always had an interest in community participation and involvement since I became a mental health nurse and later a nurse educator; therefore working collaboratively with individuals to meet their identified needs and to achieve their goals is not entirely new to me. The philosophy underpinning PAR is discussed which includes the contribution made by Heron and Reason 2007; Montero 2000; Koch and Kralik 2006; Habermas 1972; 1984, and Berger and Luckmann’s 1991 theory of social construction in the development of knowledge in PAR. Evaluation in this type of co-operative inquiry provides a rigorous criterion by which it can be considered as trustworthy/believable.

In the next chapter, a full description of the PAR process will be presented: the research setting, gaining ethics approval, ethical and methodological considerations, how participants were recruited to the inquiry, data generation and analysis plus the phases of the inquiry. I will be following the cyclical processes of ‘looking, thinking and acting’ as a systematic cyclical action process. The looking process starts with either the individual or group describing the context that can be a story, a situation or having a voice. Thinking gives the individual/group time to reflect, to make sense of what is happening and engage in a dialogue. Acting considers options or choices available to them towards reform (Koch & Kralik 2006).

Chapter 5