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The psychosocial dimension of CACS

Involuntary weight loss and other symptoms of CACS, such as anorexia and fatigue, can be experienced as devastating. They can also evoke anxiety and distress caused by their association with dependency and impending death.

“I don't think I can go on much longer like this....The losing weight so rapidly. Losing the weight, I just don't know what to make of it (cries quietly)....I'm frightened to go out on my own because my legs are so weak....I want to eat but I can't. I do try. I just can't. I have got no feeling for food....I never used to find any hardship eating, walking or anything and then your life turns around, you know, it seems so strange.” (Grace)
These difficulties experienced by Grace illustrate how the consequences of CACS may span all four domains of health related quality of life: physical, psychological, social and spiritual. Her experience is typical: loss of physical strength accompanied by change in eating habits (amount, type and pattern of food intake), loss of independence, sense of failure and helplessness, social isolation and thoughts of death.
Involuntary weight loss also causes change in physical appearance. In some cases, this can become another source of anxiety and distress. Negative perception of body image can challenge identity, contribute to feelings of lost control and, when noticed by others, be experienced as isolating and stigmatizing. In other cases, CACS-induced weight loss is incorrectly perceived to be beneficial, especially in its early course and amongst those who are overweight. The self-management of diet and physical activity that can contribute towards muscle mass retention may thus be inhibited
The impact of CACS extends beyond the patient to their family members.

The symptoms of CACS have also been found to cause distress to family members.
“That's nearly a pound a day she's losing....It hurts me to talk about it....the way she is going it will be lucky if she is here on my birthday (in two months time). It's not just difficult, it is damn hell. It is so painful.” (Grace's daughter)

Family members may fear the patient is starving to death. In attempting to help, the response of some is counterproductive. For example, they might pressurize the patient to eat, engage in force-feeding or accuse healthcare professionals of neglect. Uncertainty about what to do for the best can foster disagreements, which in some cases, causes conflict that adds to distress.

Jane Hopkinson

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