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.

Constructions of nutrition for community dwelling people with chronic disease.

The purpose of this paper is to explore the issue of nutrition as it relates to people who are living with chronic disease in the community. An examination of the health literature identifies the vulnerability of these people in relation to nutrition, and highlights the need for identifying and providing support to people who are at nutritional risk or undernourished. The aim of this study was to examine the meaning of nutrition for people living with chronic disease in the community, and to understand from the person's perspective the issues surrounding nutrition and how these issues are experienced. Data were generated with men and women learning to live with chronic conditions. Dialogue between participants and the researchers (first and second authors) were exchanged between 2003-2005 via email discussion groups. The findings of this paper reveal that an important aspect of providing support to people around nutrition issues is being overlooked. Participants contend that the biomedical approach with its emphasis on food intake and measurements, overlooks the person's unique historical and socio cultural meanings for food and eating. It is concluded that understanding these meanings are pivotal to creating a realistic and sustainable intervention plan that is meaningful and acceptable to the person.

Women's experiences of fatigue in chronic illness.

AIM: The aim of this paper is to add a qualitative dimension to the body of knowledge about fatigue by revealing the meaning given by women living with chronic illness to the experience of fatigue. BACKGROUND: Fatigue is a common symptom experienced by people who live with chronic illness. It pervades every aspect of life and may be experienced in physical, psychological, emotional or social dimensions. Management of fatigue relies heavily on the individual's ability to employ self-care actions. The invisibility of fatigue is recognized as one of the most frustrating aspects, which can lead to lack of understanding and misunderstanding by others. METHOD: We report the findings of data from research in progress (2003-2005). Data were generated via email group conversations between us and 30 women who live with long-term illness. FINDINGS: A recurring conversational thread has been women's experiences of fatigue when living with long-term illness. Although fatigue has been reported to be a major obstacle to maintaining usual daily activities and quality of life, few studies have explored this common symptom from the perspective of people themselves. Common themes found in the experience of fatigue as described by women are the meaning of fatigue, awareness as self-care, fatigue as invisible to others, seeking medical validation and accountability for self-care. CONCLUSION: It is vital for healthcare workers to give opportunities for women to talk about fatigue, validate their experiences and provide support with self-care. Healthcare workers are encouraged to challenge their own meanings and expectations surrounding a person's report of fatigue so that opportunities for therapeutic intervention can be facilitated.

'Moving on': the transition to living well with chronic illness.

This paper describes the process of 'moving on' when living with a chronic illness or condition. The findings of this study emerged from daily email conversations between six women who live with long term illness and the three researchers during a three month period in 2003. In collaboration with the women, researchers have drawn out seven interrelated themes which are seen to constitute the process of 'moving on'. The concept of readiness to change is discussed as fundamental to the relationship between potential learning as a result of living with illness and 'moving on'. We conclude that health workers are in a strong position to facilitate the learning that will assist people to 'move on' and incorporate illness as an ordinary part of life.