http://doi.org/10.33698/NRF0064  Suksham Chopra, Indarjit Walia, Prem Verma, Karobi Das

Abstract : Rheumatoid Arthritis (RA) is a chronic inflammatory disease which affects more women than men. Sixty – five patients suffering from rheumatoid arthritis and attending medical out- patient department of PGIMER, Chandigarh were interviewed during 2003-2004, to study their perception about etiology of rheumatoid arthritis and its management by primary care providers. Majority of the patients were married females (86.1%) and above thirty years of age (84.6%). More than sixty percent had attributed rheumatoid arthritis to various factors including ‘lack of proper care during the post natal period’ and ‘staying in cold climate’. More than one third perceived their health status to be poor as they were not able to perform their routine physical activities. More than sixty percent (64.7%) had stated that they were suffering for more than five years and majority of the patients had visited practitioners of different systems of medicine for their treatment. Spouses and siblings played important role in providing primary care to the rheumatoid arthritis patients. In future, there is need to suitably modify current strategies so as to increase the impact of primary care  (social support) and reduce the level of disability among rheumatoid arthritis patients.

Key words :

Rheumatoid arthritis, primary care, physical activity.

Correspondence at :

Indarjit Walia, Principal

National Institute of Nursing Education, PGIMER, Chandigarh..

Introduction

Rheumatoid Arthritis (RA) is a chronic inflammatory disease which affects about one percent of the world’s population. Women are affected more than men with a ratio of 3:11. It is more prevalent among people in the age group 40-70 years2. Evidence suggests that individuals suffering from rheumatoid arthritis appear more fatigued, weak an depressed than their normal counterparts. This is attributable to a variety of factors including lack of primary care for its management. The importance of physical activity in the management of rheumatoid ar thritis has been well emphasized3-5. Rheumatoid arthritis also affects patients’ quality of life due to activity limitations and social participation restrictions6. In the management of rheumatoid arthritis, provision of primary care therefore acquires a great deal of importance. The present study deals with the patients’ perception about etiology of rheumatoid arthritis highlighting the role of primary care providers in its management.

Materials and Methods

The present study was carried out in the out-patient department of the Postgraduate Institute of Medical Education and Research, Chandigarh, during 2003-04. Sixty-five patients who were suffering from rheumatoid arthritis (as per ACR from criteria) attending the medical OPD, were selected for the purpose of this study. The objectives of the study were explained to the patients and only those patients were selected for inclusion in this study who expressed their willingness to participate in it by answering the queries. Data were gathered by a person trained in social sciences with the help of semi-structured interview schedule which was thoroughly pre-tested. The interviews were carried out in the local dialect permitting the respondents (patients) full freedom to frankly express their views. The study was carried out with the following objectives: (i) To study patients’ perception about etiology of rheumatoid arthritis; (ii) to explore the role of primary care providers  in   its   management   and ;(iii) to suggest guidelines for its management.

Result

Of the sixty-five patients interviewed, a majority of them were females (86.1%) representing urban areas of Punjab, Haryana and Himachal pradesh (85.1%). Age-wise, only 15.4 percent were below 30 years, and the rest all were either in the age group 31-50 years (56.9%) or above 51 years (27.7%). Education-wise, 64.6 percent of them had either studied upto the 12th standard or were graduates or post graduates. More than sixty percent of them (63.1%) represented nuclear families. Income -wise, nearly seventy percent of the respondents (69.3%) had a monthly income of Rs. 5001 and above. Interestingly, more than eighty percent of them (81.5%) had no family history of rheumatoid arthritis. (Table 1).

Table – 1 : Distribution of rheumatoid arthritis patients according to their socio-demographic characteristics.                                                                                     N=65

 

Socio-Demographic Characteristics f (%)
a)   Age group (in years)  
I) less than 30 10 (15.4)
II) 31-50 37 (26.9)
III) 51 and above 18 (27.7)
b) Educational status  
I) Illiterate 11 (16.9)
II) Up to 10th class 12 (18.5)
III) Up to 12th class. 21 (32.3)
IV) Graduates and Postgraduates 21 (32.3)
c) Family type  
I) Joint 24 (36.9)
II) Nuclear 41 (63.1)
d) Family income (in rupees )  
I) Less than 5000. 20 (30.7)
II) 5001-10,000 17 (41.5)
III) 10,001 and above 18 (27.8)

 PATIENTS’ PERCEPTION ABOUT ETIOLOGY OF RHEUMATOID ARTHRITIS AND THEIR PERCEIVED HEALTH STATUS.

Understanding patients’ perception about the etiology of rheumatoid arthritis can be of enormous help in its management. The findings of this study make it abundantly clear that a majority of the patients attributed it to a host of factors including ‘lack of proper care during the postnatal period’ (30.8 %) and living in a cold climate (33.9 %). Some of them attributed it to ‘lack of care after the accident’ (7.8%). Moreover, 10.2 percent had attributed it to ‘God’s Will’ or ‘Bad Karmas’ and ‘experiencing of spontaneous abortions’ (12.6%). (Table 2)

Table -2 :   Patients perception about etiology of rheumatoid arthritis            N= 65

 

Perception about rheumatoid arthritis f (%)
I)     Living in hilly area (cold climate) 22 (33.9)
II)    Lack of care during the post natal period 20 (30.8)
III) Reoccurrence of spontaneous abortions and infertility 8 (12.6)
IV) God’s Will (Bad Karma’s) 7 (10.2)
V)   Lack of care after the accident 5 (7.8)
VI)     Poor health ( weakness/tension and worries) 3 (4.7)

 Regarding patients’ perception of their own health status at the time of interview, more than one-third of them considered it to be poor as they were not able to perform their routine physical activities (35.4%). Another thirty percent (30.8%) expressed that their health status was fair, as they were able to perform their physical activities with some help. Only one third of them mentioned that their health status was ‘good’ as they were able to perform their daily physical activities without seeking others’ help(33.8%) (Figure – 1)

Figure -1 : Distribution of rheumatoid arthritis patients according to their perceived present and future health status.

In view of the chronic nature of the disease, more than forty-five percent(46.2%) of the patients were apprehensive of further deterioration of their health status in future. However, the optimistic amongst them felt that their health status will improve further provided they receive proper treatment on a regular basis.

DURATION OF SICKNESS AND HEALTH SEEKING BEHAVIOUR.

In order to get quick relief from the symptoms, a majority of them had approached various practitioners of different systems of medicine, prior to visiting the out-patient department of the PGIMER, Chandigarh. An idea about the chronic nature of the disease can be had from the fact that more than sixty percent (64.7%) had stated that they were suffering for more than five years. Only three of them specifically mentioned that they had not sought medicine from any other source prior to approaching the PGIMER, for treatment. These findings are in conformity with the findings of several other studies where patients sought treatment from practitioners of different systems of medicine 8-10 .It was also found that the patients who suffered for more than eleven years had relied on ‘mixed therapy’ and that they combined it with massage (hot and cold), physical exercises and yoga for symptom- relief, one month prior to the interview. (Figure – 2)

 

1
3

6.

Figure -2 : Distribution of rheumatoid arthritis patients according to their duration of sickness and type of treatment.

PRIMARY CARE SEEKING IN THE MANAGEMENT OF RHEUMATOID ARTHRITIS

In the present study, a majority of the patients had received primary care either from their spouses (83.8%) or siblings (60%). Nearly thirty percent of them also received such care from their parents or in-laws. And more than one fourth of them, also specified that they received primary care from their relatives and family friends (26.1%) for performing their day- to-day physical activities. (Table 3)

Table – 3 : Distribution of rheumatoid arthritis patients according to frequency and type of primary care providers.

  1. No. Type of Primary Frequency of Care Care Providers

 

  Always Sometimes Never Total
f (%) f  (%) f (%) f (%)
1) Husband/Spouse 41 (63.1) 13 (20.0) 11 (16.9) 65 (100.0)
2) Siblings(Sons/ Daughters) 21 (32.4) 18 (27.6) 26 (40.0) 65 (100.0)
3) Parents/ In-laws 12 (18.4) 8 (12.3) 45 (69.3) 65 (100.0)
4) Others(Family, Friends and Relatives etc.)  

5 (7.7)

 

12 (18.4)

 

48 (73.9)

 

65 (100.0)

 Review of studies, clearly indicates that rheumatoid arthritis reduces one’s physical activities considerably11-13. Thus in the management of day -to-day physical activities, patients had to seek primary care at the family level. No doubt, primary care to patients suffering from rheumatoid arthritis plays an important role as it not only helps in the performance of patients’ day-to-day physical activities but also psychologically. Obviously, family ties within the social network prove conducive in the maintenance of one’s health by coping with stressful events of life. Studies have shown how patients’ perception of availability of such support adequately increases the treatment regimens, besides improving their chances of rehabilitation and over all health outcomes.14-15

Discussion

Suffice is to mention that the findings of this study are similar with the findings of several other studies where the majority of the rheumatoid arthritis patients were above thirty years of age and married females16-17 Review of numerous studies in different settings also reveals that the patients who perceived having supported spouses had actually adopted the coping strategies, whereas the patients who perceived having critical spouses, had resorted to maladaptive behavior and thus made poor psychological adjustment18-19. This study, further strengthens the view that patients’ spouses and siblings (sons/daughters) can play an important role in the management of rheumatoid arthritis through providing primary care. In some studies the role of grown up children in providing support to such patients has also been highlighted. But this is different in the case of families where rheumatoid arthritis patients have to share the responsibility of looking after young children.20-21 In the present study, a majority of the patients were married and as such their husbands’ role in providing them primary care acquired significance. Recent literature has also emphasized the importance of Social Support Networks (SSNs) in the management of cardiovascular disease.22-23 Obviously, there is a need to suitably modify the current strategies so as to increase the impact of primary care (social support) among rheumatoid arthritis patients as well.

Limitations

An obvious limitation of the present study relates to the limited knowledge base of care-givers among rheumatoid arthritis patients. It has been suggested that care- givers should also have a similar knowledge base and understanding as the rheumatoid patients have. The clinicians and other decision-makers may like to assign a greater role to care givers in future who could provide primary care to rheumatoid arthritis patients while further strengthening the social support network.Future intervention programs therefore, should have a holistic orientation incorporating the role of primary care givers to rheumatoid arthritis patients. The need of the hour is to reduce current level of disability among them as this affects an individual’s social as well as economic status. And ultimately this affects their families and the society at large in which they live.

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