Integrating Chronic Illness into One's Life

Abstract

Chronic illness is currently the number one health problem facing the United States. Little is known about the experience of making chronic illness a part of one's life, particularly from the perspective of the chronically ill person. The purpose of this phenomenological inquiry was to explore how chronically ill adults integrate chronic illness into their lives. Seventeen chronically ill adults were interviewed by the researcher. Using a modification of Colaizzi's (1978) method of data analysis, 4 major themes emerged. These themes were: confronting loss, fluctuating emotions, making changes, and gaining control of an altered life direction. Some of the major recommendations and implications for nursing practice centered around perceiving the entire experience of chronic illness with an emphasis on the need to recognize and assess loss as an ongoing and unending experience, and how this loss influences a participant's willingness and ability to implement changes required by the medical treatment plan.

Phenomenology as a Resource for Patients

“…Williams notes mechanisms such as coping, normalisation, strategic mobilisation of resources, accommodation and denial (ibid.). Charmaz (1983) describes changes to one's sense of self and identity; and enduring, struggling and disruption are often used to describe the experience of illness (Ohman et al 2003;Michael 1996). But there is also evidence of positive adaptive responses.…”

“…But there is also evidence of positive adaptive responses. Michael (1996) reports 'gaining control of an altered life direction' as a theme expressed by chronically ill people. Other adaptive themes include confronting loss, struggling for normalcy (Ohman et al 2003), reformulating the self, transcending suffering and courage in the face of adversity.…”

Living with Muscular Dystrophy: Illness Experience, Activities of Daily Living, Coping, Quality of Life and Rehabilitation

“…The literature often focuses on the general impact of chronic illness and has failed to address the afflicted persons' experience of occupation in daily life. Many studies fail to illuminate what people do and how they integrate illness into daily life (Michael 1996).…”

“…These persons may withdraw from others and from activities, which may lead to a social isolation and deterioration of the quality of life (Eggers & Zatz 1998, Hall et al 1991. It is therefore important to identify social isolation, pay attention to it, and to consider it in rehabilitation efforts (Michael 1996). The way in which the individual copes with a transition and adjusts to change, and the way in which the environment affects the individual, are fundamental questions for medical care staff (Meleis 1991).…”

“…The instrument has been judged to be acceptably reliable and valid , Watson et al 1988). The MAC has been translated to Swedish (Berglund et al 1994) and adapted for patients with MD , 1996 by replacing the word 'cancer' with 'muscular dystrophy', and by modifying three items as indicated by the italicised parts as follows: 'I am firmly convinced that I am not going to get worse' (originally: 'going to get better'), 'I have made up my mind that the worst is over now and I want to forget that I have the disease' (originally: 'it is over now and I am leaving the disease behind me'), 'I am worried that the muscular dystrophy is going to get worse' (originally: 'cancer is going to come back or get worse'). This adapted version of the questionnaire has shown acceptable reliability and validity as compared with results based on interview data (Ahlström & Sjödén 1996).…”