Year : 2009 | Volume
: 20 | Issue : 3 | Page : 386--391
Perceived illness intrusion among patients on hemodialysis
Usha Bapat, Prashanth G Kedlaya, Gokulnath
Department of Nephrology, St. John’s Medical College Hospital, Bangalore, India
Department of Nephrology, St. John’s Medical College Hospital, Sarjapur Road, Bangalore
Dialysis therapy is extremely stressful as it interferes with all spheres of daily activities of the patients. This study is aimed at understanding the perceived illness intrusion among patients on hemodialysis (HD) and to find the association between illness intrusion and patient demographics as well as duration of dialysis. A cross sectional study involving 90 patients with chronic kidney disease (CKD) stage V, on HD was performed during the period from 2005 to 2006. The subjects included were above 18 years of age, willing, stable and on dialysis for at least two months. Patients with psychiatric co-morbidity were excluded. A semi-structured interview schedule covering sociodemographics and a 13 item illness intrusion checklist covering the various aspects of life was carried out. The study patients were asked to rate the illness intrusion and the extent. The data were analyzed statistically. The mean age of the subjects was 50.28 ± 13.69 years, males were predominant (85%), 73% were married, 50% belonged to Hindu religion, 25% had pre-degree education, 25% were employed and 22% were housewives. About 40% and 38% of the study patients belonged to middle and upper socio-economic strata respectively; 86% had urban background and lived in nuclear families. The mean duration on dialysis was 24 ± 29.6 months. All the subjects reported illness intrusion to a lesser or greater extent in various areas including: health (44%), work (70%) finance (55%), diet (50%) sexual life (38%) and psychological status (25%). Illness had not intruded in areas of relationship with spouse (67%), friends (76%), family (79%), social (40%) and religious functions (72%). Statistically significant association was noted between illness intrusion and occupation (P= 0.02).
|How to cite this article:|
Bapat U, Kedlaya PG, Gokulnath. Perceived illness intrusion among patients on hemodialysis.Saudi J Kidney Dis Transpl 2009;20:386-391
|How to cite this URL:|
Bapat U, Kedlaya PG, Gokulnath. Perceived illness intrusion among patients on hemodialysis. Saudi J Kidney Dis Transpl [serial online] 2009 [cited 2020 Aug 4 ];20:386-391
Available from: http://www.sjkdt.org/text.asp?2009/20/3/386/50767
Life on dialysis is a perpetual challenge, due to the demanding treatment schedule and dietary restrictions.  The dialysis patients dependence on a machine for survival conflicts with the independence needed to maintain a normal life. A number of stress factors operate in patients on maintenance hemodialysis (HD). These include social, financial, and marital problems, dependency on the machine, limited activities and treatment related problems.  Life on dialysis (ESRD) shares similarities with other chronic disorders in that there are threats to autonomy, a considerable burden of illness and changes in functional status.  Illness intrusion is a fundamenta determinant of the psychosocial impact of chronic illness.  Chronic illnesses can disrupt life styles by interfering with involvement in activities and interests.  Hagaren et al indicated that patients on HD experienced many areas of suffering. This is related to a loss of freedom because of dependency on the machine as a lifeline,  and affects the nature and quality of marital, family and social relationships.  Patients with ESRD typically experience a number of illness-induced stressors that can exert lifestyle disrupting effects. Illness intrusiveness is hypothesized to derive from illness induced anatomical changes, functional deficits and physical disabilities. All these compromise psychosocial well being and contribute to increased emotional distress.  The paucity of published Indian literature focusing on this subject prompted us to undertake the present study.
The aims and objectives of the study were (a) to study the perception of illness intrusion among patients on HD; (b) to delineate their demographics and, (c) to look into the association between per-ceived illness intrusion and demographics as well as duration on dialysis.
Materials and Methods
This is a cross sectional study of 90 incident chronic kidney disease (CKD) patients on HD during 2005-2006. We included patients above 18 years of age, who were willing to participate, stable and who had completed at least two months of HD. Patients with previous psychiatric co-morbidity were excluded. The subjects were interviewed using a semi-structured interview schedule covering demographics. A 13 item illness intrusion checklist covering the various aspects of life was used. Illness intrusion was assessed using a modified illness intrusion checklist based on Illness Intrusiveness Rating Scale  to suit the applicability to our patient population. This self reporting instrument obtains ratings of the extent to which the illness interferes with each of the life domains. The subjects had to rate their individual ratings on a 4 point scale ranging from zero (not applicable), one (not at all), two (to some extent) and three (to a great extent). The scores were then computed and the extent of the illness was determined. Descriptive statistics were used to analyze the demographics and, Chi square test of association was used to analyze the variables with SPSS windows Version 10.
[Table 1] shows the demographic characteristics of the patients; 31% were above 58 years of age followed by 27% in the age-group 48-57 years and 21% in the age group of 38-47 years. There was male preponderance (71%) and 85% of the study patients were married. Nearly 75% of the respondents belonged to Hindu religion. Fifty-five percent had completed their pre-degree, 25% were employed, 40% and 38% respectively, were from middle and upper socio-economic strata. Eighty six percent of the respondents were from urban background and belonged to nuclear families.
[Figure 1] show the duration on dialysis in months. Majority of the respondents (80%) had completed 2-30 months on dialysis with a mean of 24.29 ± 29.76 months. [Figure 2] shows that 56% of the respondents were on thrice weekly dialysis. As shown in [Table 2], there was a statistically significant association between illness intrusion and occupation (P= 0.02). All the respondent in of dialysis indicated that their illness had intruded into their daily life. The areas of daily life affected to varying degrees are depicted in [Table 3]; health (44%) and diet (50%) were the most affected. In the area of work, 70% reported illness intrusion of whom, 34% had intrusion to "some extent" and 36% said they had intrusion to a "great extent".
Sixty percent of the respondents did not take part in any active sporting activities. Similarly, 50% did not have any hobbies and amongst those who had some hobbies, 23% reported no illness intrusion, 55% reported that illness intrusion was experienced to a "great extent" and 26%, to "some extent."
Thirty eight percent reported illness intrusion to a great extent in sexual life, while relationship with the spouse was not affected in 67% of the respondents; relationship with family and friends was not affected in 79% of the respondents. In 69%, illness had not intruded largely into the psychological/emotional areas while 32% reported intrusion to a small degree. Fifty percent of the subjects reported that illness had not interfered in their social functions. Similarly, 72% reported that illness had not interfered with regard to religious activities or functions.
Chronic disabling conditions disrupt the lifestyles of the affected individuals and their families by interfering with their activities and interests, thus compromising quality of life.  Illness intrusiveness or illness induced disruptions to lifestyle, activities and interest's impacts on the psycho social aspects of chronic illness, and it interferes with continued involvement in valued activities and interests. Illness intrusiveness has also been observed to relate systematically to a number of psychosocialoutcomes. In patients with ESRD, illness intrusion affects important life domains such as work and finances, family and personal relationships, recreation as well as health related domains.  These patients experience a number of illness induced stressors. The most common of these are physical disability and incapacitation, decreased strength and stamina chronic pain, dependency on the machine, complex medical regimens, significant time commitments for treatment and economic burdens. An illness is said to be intrusive when it substantially interferes with one's desired life style as in ESRD.  There is paucity of data in Indian literature in this field. The Western literature available also carries limited information. There are few studies on illness intrusiveness among ESRD patients; one study compares patients with chronic illnesses such as rheumatoid arthritis, multiple sclerosis and ESRD. 
As shown in [Table 1], there was a male preponderance in our study, which is consistent with higher prevalence of CKD in males or, it may be that more male patients seek treatment for ESRD. This could be due to the influence of both social and cultural factors. The elderly comprise the most rapidly expanding segment of ESRD population worldwide. 7 In this cohort, we observed a large majority of subjects were above 58 years of age. This could be due to, (a) the increased longevity attributable to medical/ technological advances and, (b) more centers are offering treatment for elderly CKD patients. Nearly 50% of the patients in the age-group 38 to 58 years included those who were, (a) unfit to undergo transplantation either due to co morbidity or absence of willing and medically fit donors in the family, (b) those waiting for a deceased donor kidney or (c) those subjects who had preferred dialysis therapy for personal reasons. In this study, the younger age group comprised of a small number of patients, as they would have opted for transplantation. The subjects' marital status is consistent with their age with the majority being married. Seventy five percent of our study patients were educated up to pre degree, degree or post graduation. Nearly half the study patients were involved in some kind of an occupation, including the homemakers. Most were from the middle and upper socioeconomic strata, nuclear families and urban background.
There was a statistically significant association between illness intrusion and occupation [Table 2]. Individuals with ESRD experience significantly disabling symptoms such as fatigue, low energy, pain and reduced physical strength and stamina. This is consistent with the patients' perceived illness intrusion with work; in nearly 70%, illness had affected work to a lesser or greater extent. Also, the dialysis treatment schedule of three times a week, four hours each session, takes away significant productive time.
Chronic conditions may vary in the magnitude of illness intrusiveness they produce in specific life domains.  Intrusiveness, however, derives from illness produced disruptions. A variety of illness variables have been hypothesized to contribute to illness intrusions.  [Table 3] and [Table 4] indicate that illness intrusion was reported to a greater or lesser extent by 87% of the patients. The patients with ESRD reported significantly higher levels of illness intrusiveness into diet, most likely because of the substantial dietary and fluid intake limitations associated with renal replacement by HD.  A similar pattern is seen in our study sample; 77% were affected to a lesser or greater extent by the modified diet. Sports activities were not applicable to 60% and of those who played, 23% reported that their activities were affected to a great extent. Additionally, 50% did not have any hobbies. Eightyone percent reported that illness intruded into finance to "a greater or lesser extent". This is because the governmental funding is not sufficient to meet the demands, and medical insurance is yet to become popular and thus, patients have to pay for their treatment. Although there is enough expertise and facilities to provide all forms of renal replacement therapy for ESRD, the government is just not able to fund that large amount and is able to spend only $9 (approximately Rs 336) per capita per year on health. 
Sexual dysfunction is common in patients with CKD on dialysis and often adversely affects quality of life. A myriad of sexual problems affect men and women with CKD including decreased libido, erectile dysfunction, dysmenorrhea and infertility.  More than half the study patients reported significantly high intrusiveness into sex life while 68% said that relationship with their spouses had not been affected. Individuals with ESRD experience significant disabling symptoms, which may not be directly evident to the marital partners; they may fail to recognize these symptoms as determinants of illness intrusiveness. The spouses may perceive it as adoption of the sick role by the patient or abnormal behavior for secondary gain.  Illness intrusion was not experienced with regard to relationship with friends by 76%. Nearly 75% of the respondents reported no illness intrusion with regard to psychological and emotional spheres. This perception is probably seen among patients who have been on dialysis for a long duration and are well adjusted. Similarly, illness intrusion into the social and religious functions was reported by 40% of the respondents while nearly 25% reported that it had not affected them at all. The statistically significant association between illness intrusion and occupation could be explained in terms of the stringent thrice a week dialysis schedule interfering with the work schedule.
We conclude from our study that HD patients perceived illness intrusion in their daily life. Males who were educated, employed, married, from nuclear families and urban background were predominant. Statistically significant association was noted between illness intrusion and occupation.
We wish to place our sincere thanks to our colleague Dr. Shobhana G. Nayak, without whose support and encouragement, this study could not have been possible.
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