Enhancing lives through the development of a community-based participatory action research programme

A community-based participatory action research (PAR) programme that has spanned 5 years is discussed in this article. A primary healthcare philosophy requires research in this practice setting and supports the way healthcare is ideally organized within an integrated team and supported by a community network that includes not only the healthcare workers and service providers but also the community as partners. The principles driving three PAR inquiries are described: the development of a model for prevention of workplace violence; working with clinicians towards improving wound management practice; and management of continence for community-dwelling women living with multiple sclerosis. Participatory action research is a potentially democratic process that is equitable and liberating as participants construct meaning in the process of group discussions. We conclude that the cyclical processes inherent in PAR promote reflection and reconstruction of experiences that can lead to the enhancement of people's lives, either at an individual or community level, or both.     

Constructions of sexuality for midlife women living with chronic illness

AIM: In this paper, we reveal constructions of sexuality that were articulated by women who participated in an inquiry which aimed to understand the experiences of midlife women who live with chronic illness. The aim of this paper is to illuminate sexuality as an important health issue for women living with chronic illness and to offer ways that nurses may acknowledge and facilitate sexuality issues for women. BACKGROUND: The first author, as part of her doctoral study, corresponded with 81 women living with chronic illness. The participatory inquiry was framed by feminist principles and enabled women to anonymously share their experiences and collaborate in the direction of the research. During the analysis phase of the research, it became evident that illness had altered the way in which women conceptualized sexuality. DESIGN: The three authors performed secondary analysis of the original data set in order to re-examine the impact that chronic illness had on the sexuality of midlife women who live with chronic illness. Whilst we acknowledge that sexuality has multiple meanings, in this paper we describe the way in which women themselves have constructed and articulated their sexuality. FINDINGS: We found that sexuality incorporated women's desires, appearance, sexual feelings and expression and imposed on aspects of their lives that they had not needed to acknowledge before illness intruded. Three concerns are discussed; the changing body, meeting the needs of others and communicating sexuality. CONCLUSIONS: This paper reveals that issues of sexuality are an important health concern for women who live with long-term illness and should be acknowledged in sensitive and responsive health practices. The paper concludes that it is important for nurses to provide women opportunity for open and genuine communications about sexuality. In this way, a foundation of acceptance for the whole person is established which provides women permission to ask questions and seek assistance with sexuality issues.     

The quest for ordinariness: transition experienced by midlife women living with chronic illness

AIMS: This paper reports the findings of research that aimed to elucidate the meaning of midlife women's experiences of living with chronic illness. BACKGROUND: A lack of awareness by health professionals of the context in which women must live with chronic illness often results in women feeling overwhelmed, alienated and without voice within the delivery of health care. This inquiry privileged women's voices. DESIGN: The construct of 'transition' in chronic illness experience evolved from this collaborative and participatory research with midlife women living with adult onset chronic illness. Over a 1-year timeframe, 81 women were asked to tell their stories of living with a chronic illness. These correspondence data were thematically analysed to provide storied accounts. Guided by feminist principles, women were empowered through research processes and have actively participated in the development of the transition construct. FINDINGS: The research revealed that when women are first confronted with a chronic illness they appear to move through a complex trajectory that involves an 'extraordinary' phase of turmoil and distress; however, they may then make the transition toward an 'ordinary' phase that involves incorporating chronic illness into their lives. Transitions in chronic illness experience involve movement from extraordinariness to ordinariness and sometimes back again and were found to be processes that are nonlinear, sometimes cyclical and potentially recurring throughout a woman's life. Four major constructs emerged from women's narratives: How quickly life changes; extraordinariness: confronting life with illness; The illness experience as transforming and ordinariness: reconstructing life with illness. CONCLUSION: Nurses are in a position where they may make a difference to women who live with chronic illness. Understanding illness transitions offers a framework that will enable nurses to move beyond the bio-medically orientated concepts of nursing practice, towards a holistic approach to the provision of nursing care.     

Women living with type II diabetes: the intrusion of illness

This study is part of a larger research project which aimed to create an understanding of how people with type II diabetes incorporated chronic illness into their lives. We aimed to find wellness in the context of a chronic illness. The participatory action-orientated research (PAR) approach is consumer based and managed, and six women with diabetes and the research team met for eight two-hour sessions in August and September 1998. The objectives were to contribute to understanding of the health of adults who live with chronic illness by providing greater insight and understanding into the worlds of people who live with a chronic illness and allowing the voices of people with diabetes to be clearly heard in relation to their health. There was a wellness theme around taking time out, but considering the other dominant negative experiences, this study can only be considered as an attempt to find wellness in the context of chronic illness. The PAR process, built upon sharing, listening and reconstructing stories, worked toward the women being heard and having a voice for the first time. Listening and acting upon the voices of the women has implications for the practice of health care professionals.     

Men living with diabetes: minimizing the intrusiveness of the disease

In this paper we present the findings from the second of four Participatory Action Research (PAR) groups with men and women who have been diagnosed with type two diabetes. The findings of the men's group are reported here. People who have received a diagnosis of diabetes must immediately absorb a great deal of information about how to control their diabetes, care for themselves and make lifestyle changes. In this study, we have asked men about this transition and about what it is like to live with diabetes. We aimed to understand how people with type two diabetes incorporate chronic illness into their lives. Utilizing the processes of PAR, we created a conducive environment for the voices of people with diabetes to be clearly heard in relation to their health. Men who live with type two diabetes met with a researcher and two Clinical Nurse Consultants, for two hours, once a week, for four weeks, during November 1998. The men expressed that diabetes had made a positive impact on their lifestyle; they viewed diabetes as part of life and not as an illness. Men chose foods with confidence; their concern about potential complications meant they chose to take better care of themselves. They were confident in their knowledge of diabetes, and while they took responsibility for themselves, being supported by their partner was helpful in managing their diabetes. They managed their life with diabetes by minimizing the intrusiveness of the disease.     

Constructions of sexuality for women living with multiple sclerosis

AIM: In this paper we reveal constructions of sexuality that were articulated by 12 women who participated in an inquiry, which aimed to understand the experiences of women who live with multiple sclerosis (MS). The aim of this paper is to consider constructions of sexuality when chronic illness such as MS intervenes. BACKGROUND: In previous studies women placed their sexuality on the agenda for discussion, claiming that their concerns had not previously been vocalized nor understood. DESIGN: This participatory inquiry was framed by the principles of 'look, think and act'. These principles are operationalized as looking at ourselves, reflecting and questioning aspects of our lives, and then taking action to resolve the issues identified. Twelve women aged between 30 and 60 years who lived with MS joined the three researchers for five group sessions. Each session lasted 3 hours. In addition, several women opted to be interviewed individually. In this paper we describe the way in which women have constructed and articulated their sexuality since acquiring MS. FINDINGS: Sexuality has multiple meanings that are shaped and influenced by life experiences. When MS intrudes in a woman's life, sexuality is reshaped against a foundation of previous sexual experiences and expectations. Constructions of sexuality encompassed physical sexual responses, perceptions of appearance and attractiveness to self and others, communication and relationships, self-image and self-esteem, and the sense of affirmation and acknowledgement that women experienced from others in their everyday lives. CONCLUSIONS: This paper reveals that sexuality was not privileged by women but was regarded as an ordinary part of life. Often sexual activity was placed on hold as other aspects of living with a chronic illness intervene, for instance an exacerbation of MS. Whilst this paper has a focus on constructions of sexuality, there is a close relationship to shifts in self and identity. Health professionals need to reject the myths and stereotypes surrounding disabled women and attempt to understand the possible impact of long-term illness on women's sexuality.     

Schizophrenia and life in the world of others.

This article examines the social and relational impact of chronic schizophrenia on 10 adult sufferers living in the community in New Zealand. The findings reported here are drawn from a larger Heideggerian phenomenological study that set out to answer the question What is it like to live with schizophrenia? While schizophrenia affects all dimensions of a person's life, in this article 6 themes are presented to illustrate the impact of their illness on one aspect of the participants' lives--their interactions with others. The themes are: living with the prejudice of others, being fearful of others, feeling uncomfortable in the company of others, staying engaged with others in the world, depending on others for help, and finding others who understand. The article demonstrates that it is possible to understand the experience of those with schizophrenia, and suggests that attention to the relational aspects of the lives of people with this illness can help them to lead healthier and happier lives.     

The enigma of severe mental illness: a Swedish perspective

Today mental health professionals are challenged in supporting people with severe mental illness that live within their communities. The community treatment is, however, characterized by an uncertainty about how to best support them in their everyday lives, and professionals from different disciplines often have divergent opinions about the care. The aim of this study is to explicate the existential meaning of living with severe mental illness. Interviews with persons who relocated from an institutional setting to a community placement were analyzed within an interpretive approach. The results of the study found that people with severe mental illness experience an existential loneliness due to difficulties in changing previous suppositions about human relationships. They do not develop connections through shared new experiences with other people in their lives. One central implication of the findings is that because people with severe mental illness seem unable to benefit from new experiences, mental health nurses should consider relational aspects when planning, implementing, and evaluating nursing care.     

FROM THE EDITOR - ABOUT THIS ISSUE ON YOUTHFUL OFFENDERS

Today mental health professionals are challenged in supporting people with severe mental illness that live within their communities. The community treatment is, however, characterized by an uncertainty about how to best support them in their everyday lives, and professionals from different disciplines often have divergent opinions about the care. The aim of this study is to explicate the existential meaning of living with severe mental illness. Interviews with persons who relocated from an institutional setting to a community placement were analyzed within an interpretive approach. The results of the study found that people with severe mental illness experience an existential loneliness due to difficulties in changing previous suppositions about human relationships. They do not develop connections through shared new experiences with other people in their lives. One central implication of the findings is that because people with severe mental illness seem unable to benefit from new experiences, mental health nurses should consider relational aspects when planning, implementing, and evaluating nursing care.     

Pen pals: correspondence as a method for data generation in qualitative research

The study aimed to understand the impact of chronic illness on the lives of midlife women and explore and share the ways in which women adapt to and/or tolerate chronic illness in their lives. In 1998, 80 women participated in a study in which data were generated by corresponding with the researcher. Guided by feminist principles of collaboration, reciprocity and disclosure, we created rich stories about what it is like to live with a chronic illness. In this paper we will discuss the first phase of this inquiry which utilized correspondence between the researcher and the women. The issues posed by the use of correspondence as an innovative data generation process will be analysed. Correspondence, at first glance, may appear to be a rather impersonal communication medium. However, we are committed to this method of data generation and believe we have unlocked the doors to a viable qualitative research process. The literature to guide this process is scarce so we are keen to share work in progress. We will describe the preparation phase in setting up the study; discuss some practical issues, share some of the researcher's experiences in generating narratives from dialogues and hear from the women themselves what they consider to be significant about this research process.     

Chronic illness self-management: taking action to create order

Background. This paper presents research that was framed by our early understandings about the ways that people incorporate the consequences of illness into their lives. The word ‘transition’ has been used to describe this process. We believed self‐management to be central to the transition process but this assertion required further research, hence this paper. Aim. The research aimed at understanding the way in which people who lived with chronic illness constructed the notion of self‐management. While the participants of this study were living with arthritis, the focus was on understanding the meaning of self‐management rather than the experience of living with the symptoms of arthritis. Approach. Data were generated when nine people living with arthritis were invited to write an autobiography about their life and experiences of living with illness. Two telephone interviews were recorded with each participant and then the research group (researchers and participants) convened for a discussion meeting. Findings. In contrast to health professionals who identify self‐management as structured education, participants identified self‐management as a process initiated to bring about order in their lives. Creating a sense of order, or self‐management, had four key themes (i) Recognizing and monitoring the boundaries, (ii) Mobilizing the resources, (iii) Managing the shift in self‐identity, (iv) Balancing, pacing, planning and prioritizing Conclusions. People learned about their responses to illness through daily life experiences and as a result of trial and error. They reconfigured their daily lives and reconstructed their self‐identity by exploring their personal limitations or boundaries. Self‐management of chronic illness has been considered as both structure and process, however it is the process of self‐management that we contend is central to the experience of transition. Relevance to clinical practice. Clinical nursing intervention for people with a long term illness may be enhanced when self‐management is approached from a broad, contextual perspective and self‐management processes are integrated into clinical practice. The challenge is for nurses to embrace processes in nursing practice that will facilitate interactions with clients without obstructing the diversity of perspectives, create an environment conducive to learning and engage individuals in identifying self‐management strategies that have meaning in their lives.     

Neoliberal-oriented health care system answer to global competition or a threat to health equality for people with chronic illness

The aim of this article is to explore how a neoliberal-oriented health care system affects the experience of people living with chronic illness. We report findings from a critical hermeneutic phenomenological research study that explored how the social, economic, and political structures impinge on the lives of people with chronic illness. Research findings of this study show how the people with chronic illness in Colombia live through the effects and pressures of globalization and corporate agendas. Results also showed how the marked social inequities caused by the unequal distribution of power, services, and goods leads to health inequities and social exclusion of research participants.     

Learning to live with irritabel bowel syndrome. The influence of a group-based patient education programme on peoples' ability to manage illness in everyday life

Scand J Caring Sci; 2011; 25; 491–498
Learning to live with irritabel bowel syndrome. The influence of a group‐based patient education programme on peoples’ ability to manage illness in everyday life Background: Living with chronic irritable bowel syndrome sets limitations in peoples’ everyday lives. This is due to bad health and the difficulty to find strategies that will manage their problem. In encounters with health care providers, these people feel that they are not getting the appropriate support to manage their illness‐related troubles, and they perceive themselves to be insufficiently informed about the disease. Aim: To evaluate the influence of a group‐based patient education programme about irritable bowel syndrome, on people’s ability to manage their illness in everyday life. Methods: The study used an evaluative research design. Fifty‐one individuals with irritable bowel syndrome completed the ways of coping questionnaire, and the irritable bowel syndrome severity scoring system, before and after participating in a multidisciplinary group‐based patient education programme. Results: In the participants’ self assessments, statistical significances (p > 0.05) were found for the mean frequency of efforts used on the coping strategies distancing and escape‐avoidance. Distancing was used more often after the education programme, while escape‐avoidance, was used more seldom. The proportional use of the strategy self‐controlling (relative score) was enhanced after the education programme. The participants’ overall severity of symptoms was significantly reduced after the education programme. The individuals with a clinically noteworthy improvement in symptom severity (decrease ≤ 50) had greater changes in relative score values than those that showed a lesser improvement in symptom severity. Conclusion: Coping patterns were changed and symptoms were scored significantly less severe among the participants who participated in the education programme. Controlled studies following individuals over a longer period are suggested to establish the validity and sustainability of these changes, and qualitative interview studies would provide additional understanding about the significance of the separate parts of the education programme, and about the meaning of the programme to peoples’ everyday lives as a whole.     

Significant elements of community involvement in participatory action research: evidence from a community project

Significant elements of community involvement in participatory action research: evidence from a community project ¶Participatory action research (PAR) has been heralded as an important research methodology to address issues of research relevance, community involvement, democracy, emancipation and liberation. Increasingly, nurse researchers are turning to PAR as a method of choice. Although nursing interest in PAR is expanding little is known about how to successfully involve the community in research. This article attends to this dearth of information by presenting the results of a study investigating the significant elements of community involvement in PAR. Through the use of qualitative research methods, five themes emerged that describe the community participation process: (a) planning for participation, (b) the structural components of community participation, (c) living the philosophy, (d) enhancing the credibility, and (e) the type of leadership required to facilitate community participation. It is hoped that by sharing these results others may consider the knowledge gleaned from this project as they plan and proceed with the challenges and rewards inherent in PAR.     

Meaning of the quality of life for persons living with serious mental illness: human becoming practice with groups

Quality of life is a concern for people living with diagnoses of persistent mental illness. While some studies with this community of people have measured quality of life as an indicator of adjustment, little is known about the meaning of quality of life from the perspectives of these individuals themselves. The project described in this practice column explored the meaning of quality of life for a group of persons attending a community centre for persons with mental illness. Parse's human becoming practice method was used to guide the group process with eight men who met weekly with a nurse for 75-90 minute sessions over 10 weeks. The nurse's commitment to live true presence with the group enabled their expressions about life and the meanings of living with their particular struggles and joys, sufferings and hopes. Themes of quality of life for this group of persons are detailed in this column.     

Acceptance and denial: implications for people adapting to chronic illness: literature review

AIM: This paper reports an exploration of the terms acceptance and denial by exploring the literature, with the aim of understanding the implications of using these concepts to categorize people's responses to living with chronic illness. BACKGROUND: People learning to live with a chronic illness or condition may be judged and labelled by others as being in denial, particularly when they do not adhere to prescribed treatment regimes. METHOD: A literature search for the period between 1989 and 2003 was conducted using the electronic databases Medline, CINAHL, PSYCArticles, Health Source Nursing/Academic Edition, Academic Search Elite and Sociological Abstracts. Key terms used were 'acceptance and denial' and variations of such themes as 'chronic illness', 'disability', 'adjustment', 'illness discourse', 'medical discourse', 'illness experience', 'labelling', 'self' and 'identity'. DISCUSSION: The theoretical background of the common constructs 'acceptance and denial' are discussed using the psychoanalytic theories of Freud and Kubler-Ross's work on death and dying. Healthcare professionals and lay people commonly refer to the terms acceptance and denial when describing a person's response to chronic illness. Those whose understanding of the illness experience relies on the acceptance-denial framework may not listen when people with chronic illness attempt to tell their own unique story of how they have experienced life with illness. Instead, their listening antennae may be focused on fitting aspects of the experience with stages of adjustment. When others use labels of acceptance and denial, people who are learning to live with a chronic illness may internalize these labels as reflections of the self. This may be most likely when the person using the label is perceived to have authority, such as a healthcare professional. The internalization of negative information associated with these labels may obstruct the reshaping of self-identity that is fundamental when making a transition to living well with chronic illness. CONCLUSION: Healthcare professionals are urged to challenge the stage model of adjustment as a way of understanding the response to illness and to listen instead to the stories people tell. They are encouraged to privilege the person's experience as the basis for developing a sensitive, client-focussed response that takes into account the wider social context of people's lives as well as the medical aspects.