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11 * Key Components of Suffering in Chronic Illness The universal characteristics of suffering are a loss of central purpose, unresolved self-conflict, and impaired interpersonal relationships. The differentiation of suffering from pain responses is challenging because patients often talk about pain intensity and suffering at the same time. Research results as discussed in chapter 2 show clearly that suffering and pain are separate entities. Further, many expressions of suffering such as anger, crying, and sadness are common to those who are in pain and those who also suffer. While the process of suffering has universal characteristics, it is the expression of suffering not the process per se that is idiosyncratic and influenced by pre-morbid factors such as personality, anxiety, depression, and environment. It is therefore critical that clinicians are aware of common issues of most concern to those who suffer. The Measuring and Assessing Suffering Questionnaire (masq) not only identifies those individuals who suffer but also reveals which issues are of greatest concern to patients. Our results of studies of patients with chronic illnesses such as epilepsy, arthritis, spinal cord injuries, and migraine headache provide insights into key issues that are held in common by most patients with chronic illnesses. Results show that suffering is not disease specific. The ability to identify key factors of concern in suffering will assist all clinicians. The purpose of this chapter is to: (a) briefly describe the characteristics of four major chronic illnesses—arthritis, epilepsy, migraine headaches, and spinal cord injuries; (b) present a brief description of results obtained from a research study that used the masq to assess suffering; (c) compare research results across disease categories that show that key factors of suffering are not disease specific; and (d) review principles of professional communication competencies needed to achieve a comprehensive assessment of suffering. The focus of the discussion is to identify key suffering issues. Suffering in Patients with Arthritis Arthritis is a condition in which there is an inflammation of the joints. The joints of persons who have arthritis may be painful, hot, red, and swollen due to inflammation , infection, and/or trauma. There are many classifications of arthritis. Osteoarthritis and inflammatory arthritis (rheumatoid) are the most common. The management of patients with arthritis is complex, involving anti-inflammatory drug polytherapy, surgery, physiotherapy, occupational therapy, psychology, voca- Key Components of Suffering in Chronic Illness 165 tional counselors, and chaplaincy services. In the midst of numerous assessments and interventions, the issue of suffering as an entity separate from pain may be overlooked. The results from a study of 166 patients with arthritis have been reported elsewhere in considerable detail (1, 2). The beliefs of patients in this study are presented to show the relevance to treatment planning. The masq was given to a group of 166 persons who had arthritis and were attending a hospital-based outpatient clinic. Individuals were tested on admission and just prior to discharge. The total time frame selected was three weeks because it was thought to be an appropriate interval required to meet the criteria for testretest reliability (3) and because a great change in suffering scores over such a short time frame is not expected. This was not a randomized control study with interventions and control groups. Simply, every patient who attended the clinic was asked to participate. Thirteen people who were initially tested later withdrew from the project. Patients received physiotherapy, occupational therapy, educational information , social work, and psychological counseling as determined by the health care team. The mean age was 60.31 ± 14.23 SD years. There were 127 females in the study. Duration of illness was 10.83 ± 11.16 SD years. There were 80/166 people with osteoarthritis and 18/80 were males. Sixty-three (63/166) people had inflammatory arthritis and 16/63 were males. Twenty-three (23/166) individuals were categorized as “other,” 5 of whom were males. There were no statistically significant differences between the age of those with osteoarthritis and those with inflammatory arthritis. Subjects in the “other” category were younger than those patients in the previous categories (see table 11.1). Other disorders include mechanical low back pain, myofascial pain, avascular necrosis, pseudo gout, and chronic soft tissue pain. No specific interventions to address suffering were applied. Because these patients were involved with the initial development and testing of the masq, there were no specific work belief questions asked. The work beliefs section was added after the initial validity and reliability testing of the masq was performed. Patients...

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