Older women and chronic illness: Transitioning and learning to live with diabetes

Abstract

The first line of treatment for people diagnosed with type 2 diabetes is a change in diet and an increase in exercise. If the blood glucose level is not stabilized, then hypoglycaemic tablets and or insulin may be prescribed. People receiving a diagnosis of diabetes must absorb complex information and adopt a new lifestyle almost immediately. The purpose of this study was to explore with women, and their family members, the ways in which the women learned to live with type 2 diabetes. Using a participatory action research (PAR) methodology we explored with them, the practical ways in which they transitioned at this time. In this inquiry 11 women recently diagnosed with diabetes were asked about what it was like for them in their first year since diagnosis. In this first year we journeyed alongside the women as they and their families learned to take the consequences of this chronic condition into their lives. In this article we show how the women in this study were transitioning with their illness diagnosis. The findings from this study make a contribution to our understanding of transition theory.

Keywords

chronic illness diabetes family members learning older women transition

Introduction

Although there is a body of research on and with people diagnosed with diabetes (Debono & Cachia, 2007; Dunning, 2009; Fisher, Brownson, O’Toole, Shetty, Anwuri, & Glasgow, 2005; Francis, Feyer, & Smith, 2007; Funnell et al., 2008; Glasgow, Boles, McKay, Feil, & Barrera, 2003; Paterson & Thorne, 2000) there are no studies that have used participatory action research (PAR) approaches over time. Staying in the field for 18 months and walking alongside the 11 women participants immediately following their diagnosis of diabetes constitutes a new approach in participatory action research methodology. In addition, the involvement of family is novel.

Chronic illness is an urgent and increasing problem affecting global health. In 2005, the World Health Organization (WHO) developed a chronic disease strategic plan (2005) that countries could adopt or adapt depending on their assessment of their own specific social determinants of health and infrastructure resources. Although guided by the WHO plan and policies, there is, however, great variation in programmes and service delivery around the world (Yach, Leeder, Bell, & Kistnasamy, 2005).

Whilst there are many chronic conditions such as asthma, cancer, multiple sclerosis, cardiovascular diseases, arthritis, chronic obstructive pulmonary disease, and mental ill health to name a few, this article focuses on researching with people living with diabetes. Although diabetes has been well researched over the years, particularly from a medical focus (Burant, 2008; Funnell et al., 2008; Tang et al., 2005) there are, to date, few studies (Koch, Kralik, & Sonnack, 1999a; Koch, Kralik, & Taylor, 1999b) that explore what happens when a person is first diagnosed. It has been observed that when people are diagnosed with diabetes they need to dramatically modify their everyday lives and lifestyles, but the way in which these changes take place or not, has not been researched or studied. More importantly, what can be learned from researching with people as they take the diagnosis of a chronic condition into their lives and with family members has not been researched or studied. In line with primary health care principles (WHO, 2002), an important consideration is how health care professionals might improve their practice and create environments where people newly diagnosed with a disease condition, can be facilitated to learn to live with a chronic illness and thrive at the same time. In a previous publication (see Adili, Higgins, & Koch, 2012), relating to this study we discussed group dynamics during PAR groups with women newly diagnosed with diabetes and showed how the women learned from each other, how they built relationships and how they learned collaboratively. Our findings showed that learning from each other in a group was a powerful motivator to make changes in their lives. Participants balanced accomplishing learning tasks relating to diabetes self-management and building interpersonal relationships in the group. The focus of the research reported here was to understand the way in which mastery or becoming an expert was learned, or not.

Literature review

There is much debate about the way chronic illness is managed and who manages it: the person, the health professional or a collaboration between the individual and the health professional. Many argue that chronic disease management requires a high level of self-commitment for successful day-to-day management and to minimize the impact of the illness experience (Feldman, 2001; Fisher et al., 2005) and disability (Lundman & Jansson, 2007). In other words, the responsibility for chronic disease management is with the person who has the illness and thus the person needs to summon commitment.

Holman and Lorig (2006) argue that when people living with a chronic condition are given education, support, clinical care and monitoring in partnership with health care professionals, their self-management of disease is enhanced. Furthermore, people with a long history of self-management of disease often become experts in their care (Koch et al., 2004). With the belief that those with chronic conditions should have a say in the decisions that affect their lives and that health care professionals need to embed the knowledge of the patient as expert into their practice, Koch and Kralik (2006) have explored how people manage chronic illness.

In one of their studies, Koch et al. (2004) identified three models of management with older people who suffered with asthma. These include medical, collaborative and self-agency models each with varying degrees of self-management and self-agency. The medical model is where people assume responsibility for taking medications prescribed by their doctor. The collaborative model is a combination of management approaches prescribed by the doctor and agreed by the person with asthma. In this model the participants exercise self-agency by using approaches that are negotiated and that work for them, for example by taking medications and modifying lifestyle to accommodate distressing symptoms. The self-agency approach was where participants used alternative lifestyle approaches to control their asthma. Individuals know their responses to illness and assume self-determination through life choices. Ultimately, health professionals need to acknowledge that many people living with a chronic condition are already self-determining and their expertise should be acknowledged as such.

In our research, women were newly diagnosed and had not yet had time to build their expertise and make transitions in their life.

Chick and Meleis (1986) define transition as:

A passage from one life phase, condition, or status to another…transition refers to both the process and the outcome of complex person–environment interactions. It may involve more than one person and is embedded in the context and the situation. Defining characteristics of transition include process, disconnectedness perception and patterns and response. (p. 239)

Transition theory suggests that learning takes place as individuals adapt to changes throughout life and health (Koch & Kralik, 2006). Life and health changes herald transition, life as it was known changes, usual patterns or ways of being are disrupted, people feel differently and they may be seen as different to others (Koch & Kralik, 2006).

According to Kralik’s (2002) theory of transition, individuals experience transition as a convoluted movement between states of ‘Extraordinariness’ and ‘Ordinariness’. In her initial PhD research, focusing on the chronic condition experiences of mid-life women, Kralik (2000) conceptualized the transition experience as a ‘quest for ordinariness’. Subsequent work has described the process as one of ‘moving on’ in which the reconstruction of a valued self identity was essential (Kralik, Visentin, & Van Loon, 2006). Later, Koch and Kralik (2006) added that transition was also a messy life process. Although transition or change is a part of everyone’s life, their research focused on people living with chronic illness conditions. Their transition theory provides understanding of the continuum relating to the chronic illness experience. Transition is about moving through disruption to a place where continuity again takes precedence (Koch & Kralik, 2006) in the lives of those affected by illness. Koch and Kralik (2006) observed the movement of participants’ and the way their perceptions and actions changed over time. They identified several transition constructs including: 1) familiar life, 2) ending, 3) limbo, and 4) becoming ordinary (Koch & Kralik, 2006). In the beginning, the familiar life with its predictable ways and patterns are disrupted. In health, life is usually connected to one’s family, relationships, work and routine, living arrangements, physical and social activities. These are challenged when the person becomes ill. Through the disruption of illness the person might have a sense of being damaged or fear of change, and feel disconnected from the familiar. Indeed, the disruption of illness ‘ends the sense of community, order and the familiar’ (Koch & Krlik, 2006, p. 156). Limbo is that state where the individual feels overwhelmingly different and uncertain about their future. They may be self-absorbed while sorting out what is happening, a phase Kralik (2002) refers to as ‘extraordinary’. Becoming ordinary is where the individual reconstructs their lives integrating their illness into their current reality.

Support from the family, friends, peers, society or health care professionals is an important factor in transitioning during illness (Wang, Morrel-Samuels, Hutchison, Bell, & Pestronk, 2004). As people with a chronic condition, such as diabetes, need support to manage their condition, it is important to know how and where they can find that support, another point of investigation in my inquiry. Peer and social support seems to vary across cultures; hence programmes created to meet the needs of educating peers in the USA are not necessarily appropriate in other countries. Peer and social support programmes are under construction, to accommodate trans-cultural needs, by the WHO, The International Diabetes Federation, the Heart Foundations and other global and regional health systems (Heart Foundation, 2010; IDF, 2009; WHO, 2010).

This research was guided by the approach to participatory action research as articulated by Koch and Kralik (2006). The process of PAR is viewed as spirals of self-reflective cycles. Look, think and act describes this cycle where looking can be facilitated through asking participants to tell their story. According to Ciu (2003), a variety of focus group methods can be adapted not only to facilitate critical awareness-raising, but also as a systematic and focused way of managing the change process through problem-solving, decision-making and reflection. However, the claim to transformation in PAR, particularly when communicating such a claim to a wider research community, cannot be based solely on the use of specific methods (e.g. focus groups). It requires the critical reflection of the researcher on all levels of knowing and doing, and the critical description of the experiences of specific struggles fought by participants who wield other forms of power besides talk.

A significant problem with conventional interventions in the context of chronic conditions such as diabetes is that conventional interventions tend to be expert driven and externally funded. As such they are not organizationally sustainable. Programs designed and maintained in such a manner are vulnerable when funding expires or when the principal (professional) leader of the initiative shifts his or her focus to another project, changes jobs, etc. (Mendenhall & Doherty, 2007).

We were aiming to explore how women who were newly diagnosed with type 2 diabetes learned to live with their condition. The research question was: how do older women, who are newly diagnosed with diabetes, learn to accommodate and live with their condition during the first year post-diagnosis? The related questions were:

What happens in the lives of older women, what and how do they learn in the first year post-diagnosis?

What happens within the women’s families as a consequence of being diagnosed with diabetes?

In terms of sharing learning to live with diabetes, what are possible reform strategies suggested by participatory action research group participants that could inform the practice of health care professionals?

Method

This study used the participatory action research approach described by Koch and Kralik (2006). The processes used in the inquiry were:

In the first phase of this participatory action research process, to engage with women (and then their families) in ongoing interviews and conversations to ‘look and think’ about what is happening in their lives and explore individual and family members learning processes since the woman’s diagnosis with diabetes.

Using the ‘look, think and act’ participatory action research process, to concurrently analyse ongoing interviews with the women and conversations with their families, and provide feedback on actions and document progress (or otherwise).

To track ‘learning events’, in each woman’s life trajectory since diabetes was diagnosed (achieved through sustained involvement with the family), that is tracking points in her day-to-day life where she has learned a new strategy, or had an experience which she remembers, associated with a change in her attitude to her diabetes.

To invite women and their families to join a participatory action research group, and in collaboration with this group explore possible reform strategies that the participants may suggest in health promotion activities and service delivery.

Following approval from the relevant human research ethics committees, the first author, PhD candidate, joined diabetes classes to recruit and observe the teaching provided to newly diagnosed clients at a diabetes education centre within a local health district in a regional city in New South Wales, Australia. Attendance at the education classes helped to appreciate the context and content of the education and it enabled recruitment of participants.

Participants

Eleven women were recruited who had recently been diagnosed with diabetes. The 11 women were given pseudonyms and known as Anna, Barbara, Bella, Alison, Helen, Elizabeth, Katy, Sara, Kathryn, Rose and Pam. The average age of the participants was 66 years of age; the youngest person was 55 years of age and the oldest woman was 82 years of age. All women lived in the local area and all had co-morbidities including asthma, chronic heart conditions, hypertension, renal issues and thyroid conditions. Some of the women were medicated with oral diabetic agents and others were managing their diabetes with diet and exercise alone. All had attended the diabetic education program recently and all were checking their blood sugar levels regularly at home.

The family members were brought into the conversations when the woman was ready. Some women in the study elected not to invite family participation as they had full-time work and or family commitments and one decided that diabetes was not a life-threatening condition; and they did not want their family/friends to worry about them. Many of the women did not reveal their condition to others making times of celebration, such as Christmas, challenging. We employed the one to one interview style with six family members every fortnight over 12 months but most times these interviews took place with the woman being present. In hindsight this may have restrained the accounts given by their family member. Nevertheless, they were invited to share the impact this condition had on them as partner, mother, friend or spouse.

Storytelling and analysis

Generating stories

Storytelling, consisting of one to one interviews, feedback and construction of a storyline were accomplished in the first 18 months. Storytelling was acceptable to the 11 older women and they were encouraged to talk about their experiences. They were asked ‘tell me your story. Start when you were first diagnosed with diabetes.’ Without using too many prompts, the women’s conversations were audio recorded. The interviews were later transcribed verbatim and analysed using the look, think and act framework (Stringer, 2007). A story as told by the participant was then developed from the first interview transcripts.

A storyline was developed for each participant. What was talked about in conversation during interviews rarely followed a neat sequence of events; however, a storyline was needed for each participant in order to appreciate the context and process for change and transition. Each conversation or storytelling episode lasted 60–90 minutes of digital recording which created about 20 pages of single-spaced text, and the first draft storyline varied between 1500 and 3000 words. For instance, Sara’s first interview transcript was 7500 words but the storyline given to her was 2250 and its short version 600 words. Nevertheless, the final story was an effort of co-construction between the authors and the participants.

Interviews were ongoing so storytelling continued until the participant was satisfied with her story. Constant, validation of the story with participants enhanced the methodological rigour of the study. We acknowledged and recognized the unique strengths that each woman brought to our attention. We were faithful to the notion that the stories generated belonged to each of them. The process evaluation confirmed that they felt validated by our attempt to render their lives since diabetes intervened into a storyline. In listening to their stories we could follow the participants’ daily lives and to understand the major changes they had had to make in their lives.

Analysis of stories: Developing the storyline

The stories were analysed using a PAR analysis protocol developed by Koch (2011a, 2011b). Capturing the tone and voice of the participants was paramount, so using actual sentences uttered by the person were woven together into the storyline. In the first level of clustering we closely read the transcript and using the cut and paste function of the word-processing software, we attempted to sequence events or time lines. We clustered aspects of identity, relationships, social context, events, opinions, perspectives, feelings, experiences, similar content and similar phrases under temporary headings. We paid attention to words selected, particularly the verbs which relate to ‘looking, thinking and acting’. The women were asked what was going on (look coded in red), what was being reflected on here (think coded in orange) and what action was proposed (act coded in green). When clustering the women were asked what really mattered to the participant, what was important to her? The women were asked about their strengths were in this emerging storyline. At the second level of clustering text was changed into look, think and act colour codes. Then the text around strengths, self-identity, relationships, social context, events, opinions, perspectives, feelings, experiences, similar content and similar phrases, deleted repetitions, noted images and metaphors were clustered. We grouped these into paragraphs and condensed text. It was asked what was the most significant thing happening in each paragraph? In this way we determined significant statements. We then rewrote the paragraphs with the most significant statement at the helm.

Using significant statements as the first sentence of the paragraph then the paragraphs were reordered into a storyline. This storyline was further condensed by gathering the first lines of each paragraph (significant statements) and joining them together to make a short story version. Depending on the situation we could then select whether to return the long or short version of the story to the participant. We selected to give each woman the longer story line. The interview, analysis process and storyline writing was repeated for each transcript. We then compiled a list of all significant statements from each of the stories.

Women ‘looked’ at: gathering information about diabetes, aetiology and treatment of diabetes, their reaction to being diagnosed, eating habits, exercise possibilities, how other people manage their diabetes, ways to engage others (family and friends) for support, strategies to lose weight, developing tactics for eliminating ‘sweet’ foods from their diets, what constituted carbohydrates, checking their blood glucose level and all aspect of food shopping and its preparation, and suitable recipes. Women reflected: how they were feeling post-diagnosis, about the cause of diabetes, how they could improve their understanding about diabetes, about ways to change their eating habits, overcoming cravings, the most suitable exercise programme to meet their needs and capabilities, about changing their food preparation styles and adaptation of new recipes, shopping prudently for food, ways to reduce their carbohydrate intake, how to acquire better information about diabetes, ways to engage others (family and friends) for support, strategies to lose weight and checking their blood glucose level and listening to how others were taking action to improve their self-management.

The women made actions by gathering information resources on diabetes and related topics. But they were still hungry for information. Reading food labels carefully became a daily activity. One of the major changes they had to make was to do with food. There is evidence that some women lost weight over time; some reported how much they lost and for some it was obvious in their demeanour. Carbohydrate intake was reduced, cooking styles were changed, low fat diets were commenced. Reduced food portions were trialled. Some women kept a food intake diary; others placed their food on smaller plates. A few women declared that they would not eat in between meals. Blood glucose levels were being monitored and these showed that diabetes self-management strategies were working. There is further evidence that actions were taken: women attended gyms and exercise classes, walked, some attended ‘heart moves’ (an exercise program offered by the local health facility), cycling, hydrotherapy, resistance band exercises, chair exercises and stretches.

The common story

On close reading of the stories there were some common features in their experiences. These were: being diagnosed with diabetes, living with chronic illness and other co-morbidities; the nature of support, gathering information about diabetes, challenges in modifications of lifestyle, actions generated by women toward incorporating the consequences of this condition into their lives, and self-report of feelings a year following diagnosis. We then wrote up the commonalities based on these and developed a short storyline that we could share with women (and their family) when PAR groups were convened.

The common story is as follows:

When we were diagnosed with diabetes it was such a ‘shock’, a ‘surprise’. For some of us it was ‘devastating’ news and a ‘disappointment’ in terms of our health. We did not know what caused diabetes. Some of our family members were also shocked. But a few of us, Helen and Alison, had a family history of diabetes so we were not as surprised. We knew we were overweight and besides we had been warned at if we did not look after ourselves we would develop diabetes.

It took a while for us to come to terms with our feelings and make lifestyle decisions. However, some of us, Barbara, Bella and Elizabeth took action straightaway and started exercise and diet change. We understood that we had this chronic condition and that we would need to learn how to manage it. However, we hoped that by making lifestyle changes and actions would prevent the further treatments such as going on insulin or getting complications. We recognized that diabetes will be with us for the rest of our lives and we believed we could manage it. Some of us, Barbara, Bella, Anna and Elizabeth had good family support (husbands) and this was considered to be important. Although not all of us have family or supportive friends we will do our best to look after ourselves.

All of us attended diabetes classes which were provided by HNELHN Service diabetes centre diabetes educational classes. However, some of us were not really ready to attend the diabetes classes as we were still on shock. But most of us thought attending classes was the first action to gather information about this chronic condition. We heard about ‘cooking, eating, doing exercise, food packages label reading and controlling our blood glucose level’. Diabetes classes were not the only way we gathered information. We read about living with diabetes from ‘Diabetes Australia’s magazine’, ‘books’, the ‘internet’, ‘relatives’, ‘friends’, ‘television’ and ‘radio’.

Nearly one year later we are used to living with diabetes and have learned based on our own needs. We have lots of information from different resources however we carefully select what is most understandable and select content that resonates with our experiences. Since being diagnosed with diabetes the shock has diminished and we now feel we are more ‘settled down’, ‘calmer’ and more ‘used to’ it. We plan to ‘keep going on doing right things’ and ‘stay on right track to manage our diabetes’. We want to ‘help each other’ and participate in these groups.

When we were analysing and reading the texts we observed common features in the women’s experiences. Stories were analysed using the ‘look, think and act’ framework (Stringer, 2007). Although this framework assisted with bringing the story line together it also focused on actions generated by the women and their movement toward learning to live with diabetes.

Learning to live with diabetes

Most women had a vivid recall of the moment that they were diagnosed with diabetes. Being diagnosed was etched on their minds even if their experiences were dissimilar. Most women described it as a ‘shock’, a ‘surprise’; it was ‘devastating’ to them, and they were ‘disappointed’. It took a while for women to transit with their diagnosis and instigates changes in lifestyle. Bella stated positively:

It took me a little while to overcome my feelings post-diagnosis with diabetes. Then I started thinking positively about my diabetes management and I began looking for diabetes information.

In this inquiry we explored the involvement or otherwise of family. The women believed that they were physically independent in their diabetes management and they did not need to be supported in activities of daily living although some of the husbands offered to cook or clean. However, the women claimed that they needed to be supported emotionally. They wanted encouragement to modify their lifestyle and support for maintaining changes in their lives. Four women, Barbara, Bella, Anna and Elizabeth had support from their families and this support encouraged the women to explore management of their diabetes.

A few women had good support from their friends. Sara stated excitedly:

I talk about my diabetes with one of my neighbours. She is very good. My neighbour feels I am her daughter. Every day we meet each other and have a conversation. She makes me calm.

Pam said:

My next door neighbour is wonderful. She was diagnosed with diabetes earlier this year. She helps me a lot to manage my diabetes. She even gave me a blood glucose meter to check my blood glucose level. Without this good friend I could not know how to check my blood glucose level. She encourages me every day.

Stories from family members show they were in ‘limbo’ or the ‘extraordinary’ mode in diabetes management. Some did not expect their family member to be in this situation with a diagnosis of diabetes; this might be one of the reasons that some family/friends were not supportive. Other women in the study had full-time work and or family commitments and others decided that type 2 diabetes was not a life-threatening condition; and they did not want their family/friends worry about them. Many of the women did not like to reveal their chronic condition publicly to others during times of celebration, such as Christmas.

The women’s main preoccupation related to food; what they could and could not eat, what they consumed in spite of what they knew but did not understand, what they loved to eat and what they were wrestling with in terms of feeding the family, managing celebrations, and their need to diet constantly. Texts that described and helped them understand food values were sought by all. As shown by others (Lin, Anderson, Hagerty, & Lee, 2008), eating, shopping and food preparation were the most prevalent things in the women’s minds when first diagnosed with diabetes. Exercise gained attention too. Women learned how to take exercise into their lives even when constrained by other co-morbidities such as arthritis.

We noted that this chronic condition forced changes to ‘familiar life’. Learning to live with diabetes was experienced as a ‘roller coaster ride’, a fluctuating process of confronting challenges and making adjustments and concessions. Changing their diets, finding out about the most suitable exercise and understanding their medications absorbed these women primarily; they found their new lifestyle restrictive. Their new life with diabetes required them to constantly self-monitor and observe.

Discussion

In the first year of this participatory action research process we engaged with women and then their families in ongoing interviews. We had numerous conversations and the ‘look and think’ analysis framework was used to explore what was happening in their lives post-diagnosis.

There were few studies that explored the role of family or friends providing support in chronic illnesses. Wen, Shepherd, and Parchman (2004) suggested that by accessing family support people with diabetes would be motivated to learn to look after themselves. Brody, Kogan, Murry, Chen, and Brown (2008) suggested that active family support was significantly associated with control of triglyceride, cholesterol and HbA1c levels. Their research demonstrated that the support of families and friends was an important factor in diabetes care, as those supported fared better than individuals living alone. In the study reported here, Bella, Anna and Elizabeth, were married and benefited from the support of the husbands and family members relationships.

We attempted to understand what the women were learning and what influenced or motivated their learning. If learning is a change in behaviour, they did not change their lives initially as they were preoccupied with making sense of their situation. They were hungry for knowledge and information.

We attempted to track ‘learning events’, in each woman’s life trajectory since diagnosis. We were able to track technical and practical innovations (food and/or exercise), in the woman’s life and we were able to monitor her growth and development as she incorporated these into her daily routine. Women and their families were also invited to join a participatory action research group which was hoped would initiate reform strategies in the wider community but this was not achieved, precisely because the women were not ready to move beyond their own lives.

Building on the transition thesis of Kralik (2000) we observed the way their perceptions and actions changed. When participants were first diagnosed with diabetes there were no immediate physical ramifications for them or experienced by them. Rather the person is ‘forewarned’ about the risk of complications; visual impairment, loss of limbs and so on, should they not adhere to their new lifestyle. One of their first efforts following diagnosis was to gain perspective and control by gathering as much information about diabetes as possible. Change in lifestyle was dependent on their readiness and there was great variation to being ready to change amongst the participants. What was taken for granted now required re-examination.

As noted previously, sorting out what is happening in one’s life in transition instigates reflection on ‘what is going on’? While reflecting on life, the person is preoccupied with the self while sorting this out. Kralik (2002) called this phase ‘extraordinary’. We noted that women were in the extraordinary phase or in limbo for most of the 18 months post-diagnosis. Learning to take a chronic illness into one’s life takes time. Transitional processes require time as people gradually disengage from old habits and behaviours.

The main point here is that the adjustment period or being in an ‘extraordinary’ transition mode appeared to be much longer than anticipated (Kralik, Paterson, & Coates, 2010). Certainly this has not been revealed in other research studies. Transition shows that people can and do move on when a chronic condition intervenes or disrupts their lives, however, we should not underestimate how long it takes to reorganize one’s lifestyle: even if what requires changing immediately is diet and exercise. Much more is at stake then changing a routine and breaking lifelong habits. Information, much of it obscure and contradictory, is sought and has to be digested. Food shopping needs advanced planning, new skills in food preparation need to be learned, and constant self-surveillance is required. Women asked: what does this blood glucose level mean, what does it mean to me and my life? Slotting in dedicated exercise into the daily life schedule requires reorganization of priorities. And then there is the family’s response to her diabetes. What is the impact of her diagnosis and its management on those that share her life? What else had to change?

Conclusion

Our thesis is that older women, when first diagnosed with diabetes, are self-absorbed immediately post-diagnosis of diabetes, and in support of Kralik’s (2000) transition theory; the women in this study were in limbo or ‘extraordinary’ mode. The diagnosis disrupted their daily lives. The need to make lifestyle changes immediately was often impeded by the need to know and understand. Women were not ‘ready’ to learn about ways to take the consequences of this condition into their lives and ‘move on’ or make a transition. In the first year they were preoccupied with technical and practical aspects of diabetes self-management; they were driven to gain knowledge about food and exercise. However, in their second year post-diagnosis they were learning to master activities to create order, discipline and control in their lives.

Limitations of the research

Because this study was based on doctoral studies, we were unable to follow the women for 18 months and to explore possible reform strategies that the participants may suggest in health promotion activities and service delivery. If we had stayed in the field for a longer period of time we may have witnessed women learning to self-manage and moving into ‘becoming ordinary’. In this mode we may have been able to explore reform. Instead, as note previously, the women were still adjusting and learning to integrate diabetes into their lives. They were self-absorbed with many aspects of their new life with diabetes and what this meant. In addition, whilst the participants in this study were older women, the findings may be different for younger women or even men.

Having said this, this study provides insight into how women learn in the first year following a diagnosis of diabetes. The women’s learning process in this PAR group makes a theoretical contribution to our understanding of group dynamics which has been explained in the other article (Adili et al., 2012). Our part in furthering transition theory is our main theoretical contribution.

Footnotes

Acknowledgements

The first author would like to thank The University of Newcastle for awarding Postgraduate Scholarships as follows: The University of Newcastle Postgraduate Research Scholarship (UNUPRS) and University of Newcastle Postgraduate Research Scholarship External (UNRSE) Australia and the School of Nursing and Midwifery Scholarship for the last semester of enrolment. We also thank the Newcastle women who participated with us in this research study.

We thank Svante Lifvergren for leading the review process for the authors of this article. Should there be any comments/reactions you wish to share, please bring them to the interactive portion (Reader Responses column) of the website: .

Author biographies

Fatemeh Adili, PhD, The School of Nursing and Midwifery, The University of Newcastle, Australia

Isabel Higgins, PhD, is Professor of Older Person Nursing in the School of Nursing and Midwifery, The University of Newcastle, Australia.

Tina Koch, PhD, is Conjoint Professor of Nursing in the School of Nursing and Midwifery, The University of Newcastle, Australia.

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