Conceptualizing and measuring illness self-concept: a comparison with self-esteem and optimism in predicting fibromyalgia adjustment

Illness self-concept (ISC), or the extent to which individuals are consumed by their illness, was theoretically described and evaluated with the Illness Self-Concept Scale (ISCS), a new 23-item scale, to predict adjustment in fibromyalgia. To establish convergent and discriminant validity, illness self-concept was compared to self-esteem and optimism in predicting health status, illness intrusiveness, depression, and life satisfaction. The ISCS demonstrated good reliability (alpha = .94; test-retest r = .80) and was a strong predictor of outcomes, even after controlling for optimism or self-esteem. The ISCS predicted unique variance in health-related outcomes; optimism and self-esteem did not, providing construct validation. Illness self-concept may play a significant role in coping with fibromyalgia and may prove useful in the evaluation of other chronic illnesses.     

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia: Definitions,Similarities, and Differences

This commentary presents a simplified way of making the diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) using the 1994 Centers for Disease Control and Prevention case definition. The format used can easily be modified for other case definitions. The commentary then discusses whether ME/CFS is the same or a different illness from fibromyalgia. Because overlap exists between the 2 syndromes, some investigators have posited that they are variants of the same illness. I have viewed this as an empirically testable hypothesis and have summoned considerable amounts of data that suggest that the 2 illnesses differ. Were differences to exist, that would suggest different pathophysiologic processes for each, leading to different treatments.     

Management of chronic illness: voices of rural women

BACKGROUND: The prevalence and cost of chronic illness globally and in the United States of America continue to escalate and the day-to-day management of these conditions presents a major challenge. The burden of chronic illness disproportionately affects vulnerable populations such as women and those living in rural areas. AIM: To add to the knowledge base of illness management by chronically ill rural women through examining their individual perceptions of the illness experience. METHOD: The Women to Women project provided a nursing research-based computer intervention model for conducting support groups, providing health education, and fostering self-care, via personal computers and evaluated its effect on the women's psychosocial health. FINDINGS: Fatigue and pain were the major physical symptoms that impacted the women's quality of life, with depression and stress being the primary emotions they experienced. The characteristics of humour, hope, and courage were key in their successful adaptation to living with chronic illness. CONCLUSIONS: The women's voices relate how they manage their illness responses and adaptation mechanisms. The data provide nurses with information to heighten their sensitivity to clients' day-to-day needs and experiences. It will assist them in their designing and planning of interventions that will enable clients to adapt and to have the best quality of life possible within the limitations of their chronic illnesses. The data are also important to nurses involved in rural research and theory development concerning self-management and adaptation to chronic illnesses.     

Living with Continuous Muscular Pain—Patient Perspectives

The purpose of the present study was to focus on the patient perspectives of living with chronic muscular pain, and to identify factors that can explain and give further understanding of how the condition influences everyday life. Forty women with fibromyalgia, living in two different cultural, health care and social security settings, Sweden and the USA, were interviewed, using a semi-structured format. Three preliminary typologies are suggested for further studies: Encounters, Consequences, and Strategies. The study is presented in two articles: Part I: Encounters and consequences, Part II: Strategies for daily life. This first article shows that the contradiction between the patients' perception of illness and the lack of objective findings is stressful. The women feel rejected, misunderstood, and disbelieved, which prevents them from dealing with their situation constructively. Long investigation periods provoke anxiety, and confirmation of the diagnosis is a relief. Daily routines are disrupted, conflicts between life roles lead to additional stress and the women experience loss of ability to perform valued activities, lack of physical fitness and loss of future opportunities. Patients need early and adequate information and the consequences of the condition must be acknowledged and taken into consideration if secondary economic and psychosocial consequences are to be minimized.     

The potential benefits of applying a narrative analytic approach for understanding the experience of fibromyalgia: a review

Purpose: People with fibromyalgia (FM), a medically unexplained illness, habitually experience widespread pain and fatigue. While some qualitative research has aimed to understand the experiences of people with FM, studies from a specific narrative perspective are particularly lacking. This review argues that future research could be significantly enhanced by studies which analyse the narratives of people with FM. Method: This argument is made through reference to an examination of the extant qualitative literature on the experience of FM and theories and narrative studies on chronic illnesses and identity. Results: The empirical literature is reviewed from a narrative perspective; this assumes that the stories people tell reveal much about their identities and social worlds. As such, it is proposed that narrative analysis is particularly well suited for exploring issues of self and culture and for appreciating how meanings evolve over time. Further, it is also argued that consideration of these issues is particularly relevant for understanding the experience of FM given the enigmatic nature of the syndrome and its chronic course. Conclusions: The review concludes by emphasizing that narrative analysis is a valuable method which offers the potential for uncovering novel insights about the illness experience for these individuals.

Implications for Rehabilitation

• Fibromyalgia is a chronic syndrome characterised by pain and fatigue.

• Previous research has neglected the social context within which experience of fibromyalgia develops.

• Narrative studies have the potential to reveal how people make sense of illness.

• It is important for health professionals to acknowledge and validate the uncertainly of the illness experience in fibromyalgia.

     

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.     

Feminist conceptualizations of women's madness: a review of the literature

BACKGROUND: Gender is one aspect of an individual's identity that has been widely debated and discussed in relation to many different aspects of social life. The literature review explores how gender stereotypes affect women and their experience of mental illness. The aim is to demonstrate how a feminist perspective provides a useful lens through which women's experience of mental illness can be viewed. METHODS: The papers were identified by a computerized search of the CINAHL, Medline, BIDS ISI and Mental Health Nursing Collection databases and a hand search. All papers were screened and subjected to critical review. RESULTS: A theoretical framework was developed that reflected two key themes to emerge from the feminist literature on women and mental illness, namely psychiatry as a method of socially controlling women and the medicalization of women's unhappiness. In addition the complexities and contradictions in the feminist arguments are highlighted. CONCLUSION: The paper concludes by considering the implications of the issues raised for nursing practice by drawing attention to the current debates on the need to focus on gender relations rather than just on women's issues.     

Women's experiences of 'being diagnosed' with a long-term illness

AIMS: In this paper we share women's storied accounts of 'being diagnosed' with a long-term illness. The purpose of the paper is to raise awareness of health professionals that receiving a medical diagnosis is a potentially calamitous event, challenging self-identity. BACKGROUND: The three authors were involved in three separate inquiries which explored women's experiences of living with illness. The authors realized that 'being diagnosed' was a common memorable event for the women across the inquiries. The literature around receiving a diagnosis was scarce. DESIGN: This paper is the result of secondary analysis of data from three different projects where we researched women living with long-term illness. In this paper, we focus on the experience of 'being diagnosed' as we share and show women's perceptions of receiving a medical diagnosis. FINDINGS: Receiving a medical diagnosis of a long-term illness was a memorable event in the women's lives. Many women felt alone with their illness, often without adequate information to find meaning in the relationship between their familiar self and their new identity as a woman living with illness. They felt vulnerable and lost as they tried to understand the meanings and consequences that the diagnosis held for their present and their future. Informational needs may be specific and individual. For many, receipt of a diagnostic label was momentous and should not be underestimated, despite the initial feeling of chaos, many women felt validated. CONCLUSION: Receiving a medical diagnosis is one event where health care professionals could be on standby. It is important to take the woman's articulation of the event seriously. Open, genuine communication, with willingness on behalf of the health professional to listen would be affirming for women who are coming to terms with the diagnosis of a chronic illness.     

Impromptu everyday disclosure dances: how women with fibromyalgia respond to disclosure risks at work

Purpose: Findings from a study examining how women with fibromyalgia remain employed are used to explicate a conceptualization that adds to literature on workplace disclosure of stigmatized illnesses and impairments: disclosure dances that employees improvise in response to workplace-relationships needs and disclosure risks. Methods: Critical-discourse-analysis (CDA) methodology framed the study. Data were collected through 26 semi-structured, individual interviews with participant triads or dyads comprising women with fibromyalgia, family members and supervisors or co-workers. Interviews with managers who supervised disabled employees other than the women supplemented these data. Following coding, data were compared within and across triads/dyads through code-dimension summaries, narrative summaries and relational diagrams. Results: Women with fibromyalgia and other stigmatized illnesses improvised everyday disclosures when they needed to explain fluctuating work ability, when others needed reminding about invisible impairments, and when workplace relationships changed. These impromptu disclosures comprised three dimensions: exposing oneself to scrutiny by disclosing both illness and impairments, divulging stigmatized illness, and revealing invisible impairments selectively. Conclusion: Through impromptu disclosure dances, women tailored disclosure to changing immediate circumstances. While assumptions from psychological theories of risk underlie current conceptualizations of disclosure as planned in advance, this article examines disclosure through a different lens: social theories of everyday risk.

• Implications for rehabilitation

• For women with fibromyalgia, disclosing illness and impairments at work may entail risks to their jobs and workplace relationships.

• Rehabilitation professionals need to consider these risks when advising women with fibromyalgia about disclosing their illness and impairments at work.

• Professionals may first want to learn from clients about their workplace cultures and relationships, and their perceptions of disclosure risk.

• Professionals can then suggest a range of disclosure responses, depending on the relationship and risk.

     

Adolescents' experiences of well-being when living with a long-term illness or disability

Present-day society has produced changes in family living patterns and conditions and this has resulted in new stressors and health problems. Most children and adolescents with chronic diseases and disabilities, who were previously cared for at hospitals and institutions for long periods, are now integrated in society and they are expected to live a normal life in the conditions that currently prevail. The number of young people with long-term illnesses/disability has increased worldwide during the last decades. There is lack of studies relating to the way young people regard their daily lives and factors that are important for their well-being. The aim of this study was to describe the meaning of feeling good in daily life in adolescents living with a long-term illness or disability. Eight boys and seven girls, aged between 12 and 19 years, with different conditions of long-term illness or disability, participated in the study. Tape-recorded interviews were conducted between the years 2003-2004 and the data were analysed using content analysis. The results revealed that the adolescents with long-term illness generally experienced well-being like everybody else. Three themes were found to be important in order to feel good: 'a feeling of acceptance of illness/disability as a natural part of life', 'a feeling of support' and 'a feeling of personal growth'. This study concludes that adolescents with long-term illness or disabilities experience well-being when they are allowed to prepare for living a normal life integrated in society.     

Chronic illness: reflections on a community-based action research programme

AIM: The purpose of this paper is to describe the birth of a research culture in a community nursing service, and the development and implementation of an action research programme that focuses on understanding the experiences of living with chronic illness. BACKGROUND: Approximately 70% of the clients of our community nursing practice in South Australia live with chronic illness. Our research interest has focused on how community nurses can assist people living with chronic conditions to live 'well'. In this paper we describe the way in which we have applied the principles of participatory action research (PAR) when working with women who live with multiple sclerosis (MS) and urinary incontinence. We then draw on elements of PAR research with men who live with MS and men and women who live with type 2 diabetes. In total, we have convened eight PAR groups researching with people who live in the community with chronic illness and this work constitutes our chronic illness research programme. DESIGN: The PAR philosophy is based on the principles of democratic, equitable, liberating and life enhancing relations within a research process, and is operationalized in cycles of: look, think and act. In these collaborative inquiries the researchers have facilitated participants to reflect on how illness affects their lives, to tell their own story, make connections, plan action and help them negotiate the rites of passage. We select two areas for discussion: methodological issues in the application of PAR principles and our tentative findings from the chronic illness research programme. FINDINGS: We assert that the facilitator's skill in managing group dynamics is crucial to the life and outcome of the project. Change can occur as a result of action at an individual level, with improved self-management of chronic illness, or at a collective level where the PAR group instigates larger reform strategies. In terms of tentative findings, men and women living with a chronic illness appear to be involved in an ongoing process of transition toward incorporating the illness into their lives. Although we have not yet identified specific events, we have noted that there are critical turning points in the illness transition experience. Participants feel validated in telling their story of living with a chronic illness. Story telling may be the turning point that enhances the lives of all those who participate. CONCLUSION: If health care professionals can understand the process that facilitates people to move toward incorporating chronic illness into their lives, we can make a substantial contribution to enhance their chronic disease self care management.     

End of life care: a discursive analysis of specialist palliative care nursing

AIM: The aim of this paper is to consider alternative approaches to service delivery for patients with chronic life-limiting illnesses other than cancer. It will also discuss the issues that arise when considering specialist palliative care services within a broader public health context in the United Kingdom. BACKGROUND: Contemporary specialist palliative care in the United Kingdom can be said to have two main client groups: the majority are people with a diagnosis of cancer, and a minority are those with a number of other chronic illnesses. From the evidence to date, patients dying from chronic, non-malignant disease experience a considerable number of unmet needs in terms of symptom control and psychosocial support. Although debates in the literature over the last decade have challenged the focus of specialist palliative care services on patients with a cancer diagnosis, only a minority of those with other chronic illnesses receive specialist palliative care services. DISCUSSION: Current models of specialist palliative care may not be the most appropriate for addressing the complex problems experienced by the many patients with a non-cancer diagnosis. We suggest that care should be structured around patient problems, viewing specialist palliative care as a service for those with complex end of life symptoms or problems. A role for innovative nurse-led care is proposed. CONCLUSION: Reframing the approach to specialist palliative care in the United Kingdom will require great effort on the part of all health and social care professionals, not least nurses. Critical and creative thinking are prerequisites to the development of new models of working. We suggest that a more coherent approach to research and education is required, in particular strategies that explore how patients and nurses can work together in exploring experiences of illness in order to develop more proactive approaches to care.     

Juggling identities of rheumatoid arthritis,motherhood and paid work – a grounded theory study

Purpose: To explore how women with rheumatoid arthritis manage their illness, motherhood, and work life.

Methods: A constructivist, grounded theory approach based on individual interviews and participant observations with 20 women with rheumatoid arthritis who participated in work life and had children living at home or were pregnant. After initial and focused coding Goffman’s concepts of social identity were applied.

Results: A core category: “Juggling meaningful identities” and three conceptual categories were developed: (1) Work life as the strongest identity marker; (2) Motherhood: a two-sided act; (3) Living with rheumatoid arthritis as an identity? Paid work, motherhood, and illness are linked to the women’s social identities. The women construct and change their identities in interactions with children, partners, other parents, colleagues, and employers.

Conclusion: The women attribute the highest priority to their professional identity, spending the majority of their time and energy in an effort to appear as “good stable workers”. The disease is seen as a hindrance in this regard, and the illness identity is almost completely rejected. In motherhood, the women prioritize close interaction with their children, and deprioritize external activities. Extended outbreaks of the disease and issues regarding the children force the women to deprioritize working life.

• Implications for rehabilitation

• Juggling meaningful identities of rheumatoid arthritis, motherhood, and paid work challenge women in managing their everyday lives. Therefore, rehabilitation professionals should support individuals to develop new strategies to manage the challenges they experience regarding juggling motherhood and work ability.

• Work is a dominant identity marker for women with rheumatoid arthritis therefore, rehabilitation professionals have an important role to play in investigating possible ways for the individual to maintain employment or return to work.

• Living with rheumatoid arthritis and being a paid worker challenge women’s role performance and thereby their identification as mothers. Therefore, rehabilitation professionals have to support the women and their families.

     

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.     

Human agency and the process of healing: lessons learned from women living with a chronic illness--'re-writing the expert'

In this paper we examine the notion of human agency in the context of women experiencing a chronic illness. Based on two qualitative studies conducted with Canadian women of Chinese- and Anglo-descent living with diabetes, we unmask the complex power relations inherent in patient-practitioner interactions, and problematize the privileging of healthcare providers as knowers and experts on the patient's body. Specifically, we analyse the meanings that women ascribe to their illness experience. We discuss how women experience the loss of agency in healthcare encounters, how they resist patienthood by reclaiming agency, and how healthcare providers foster agency in their interactions with women. Rather than suggesting that biomedical experts should be 'written out', we propose to rewrite healthcare providers as 'reflexive practitioners' through the construction of transformative knowledge. We argue that praxis-oriented practice, which is based on transformative knowledge, will provide the space for women and healthcare providers to enter into a new dialogue and a relation in which women can sustain a sense of self, and begin the journey of healing.     

老年常见慢性病病人心理反应的分析

目的　探讨老年慢性病人对疾病的情绪反应 ,以及影响这些情绪反应的因素。方法　对 5 0例住院老年慢性病人进行了访问。访问围绕病人的人口社会学资料、健康自我评价、日常生活自理能力、社会支持系统、负性生活事件、经济负担 ,以及如何应付由慢性病引起的压力等。结果　病人典型反应包括焦虑、恐惧、无用感、抑郁。结论　病人能否成功地适应慢性病取决于他们是否得到来自家庭、其他病人及医务人员的支持     

Chronic fatigue syndrome: evaluation and treatment

Severe fatigue is a common complaint among patients. Often, the fatigue is transient or can be attributed to a definable organic illness. Some patients present with persistent and disabling fatigue, but show no abnormalities on physical examination or screening laboratory tests. In these cases, the diagnosis of chronic fatigue syndrome (CFS) should be considered. CFS is characterized by debilitating fatigue with associated myalgias, tender lymph nodes, arthralgias, chills, feverish feelings, and postexertional malaise. Diagnosis of CFS is primarily by exclusion with no definitive laboratory test or physical findings. Medical research continues to examine the many possible etiologic agents for CFS (infectious, immunologic, neurologic, and psychiatric), but the answer remains elusive. It is known that CFS is a heterogeneous disorder possibly involving an interaction of biologic systems. Similarities with fibromyalgia exist and concomitant illnesses include irritable bowel syndrome, depression, and headaches. Therefore, treatment of CFS may be variable and should be tailored to each patient. Therapy should include exercise, diet, good sleep hygiene, antidepressants, and other medications, depending on the patient's presentation.     

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.     

Spirituality in the lives of people with disability and chronic illness: A creative paradigm of wholeness and reconstitution

To date, research within the domain of critical life events, coping, and adaptation has been mostly fragmented, outcome-oriented, and neglectful of individual differences. The aim of this research was to add a holistic understanding of the domain by using a creative hermeneutic and phenomenological perspective to understand how individuals with disability and chronic illness survive and cope successfully with their lives in spite of overwhelming odds. The lived experience of 35 informants and 14 autobiographers, who represented a wide range of people with disability and chronic illness, was used as the basis for understanding the phenomenological world of chronic conditions. Through in-depth interviews and autobiographical analysis the results were content analysed and organized into paradigm cases, exemplars and themes. Five factors that facilitated coping and adaptation were identified. The combined elements of spiritual transformation, hope, personal control, positive social supports, and meaningful engagement in life, enabled individuals to empower themselves and come to terms with their respective conditions. An overall paradigm and model of wholeness and reconstitution was also developed, which identified the processes by which people reconciled their outer forms of disability, decay or suffering and discovered an embodiment of their own inner resources and strengths. These experiences led many people to realize their own inherent sense of wholeness and unity, and to experience and integrate a deeper meaning, sense of self, and spirituality within their lives.