Discussion
The culture and lifestyle in the Middle East are different when compared to the developed world, which could influence the experience of people with knee OA. This is the first study to explore the knowledge of knee OA and its impact on health in patients diagnosed with the condition living in the Middle East, particularly in Jordan. Limited knowledge of knee OA was reported, which in part is attributed to the inappropriate service delivery process with poor communication with healthcare professionals and lack of education. Knee OA significantly limited physical activity and participation, however this limitation was not only caused by their knees but also by the culture in Jordan. Mapping the results to the ICF framework allowed international comparisons emphasizing the impact of culture on health.
There was lack of understanding of body changes with knee OA as demonstrated by the mixed answers of the participants. Most limited the changes to affect body structures only and none mentioned changes to body functions as in muscle weakness. Knee OA is known in Arabic as ”roughness of the knee” which might explain why most considered knee OA as dryness of the liquid inside the joint and increased friction. However, little was known on how it develops, risk factors, and prognosis. Limited knowledge of the pathology of knee OA was also reported in the United Kingdom3. Moreover, knee OA was perceived as an ”inevitable” condition that would deteriorate with age. Similar perspectives towards knee OA were reported worldwide8.
When exploring our participants’ understanding of the change in symptoms, they mainly linked other emotions and feelings such as tiredness and fear of pain. Fear would limit activities and participation and increase the risk of disability35. For example, people with knee OA decrease their activity fearing exacerbation of symptoms8. However, physical activity and exercises are self-management strategies used to decrease symptoms36,37. Therefore, it is essential to overcome fear of pain and falling which could be established through education and self-management programs38.
Our participants were not aware of appropriate self-management options or behavioral modification techniques to manage their symptoms. Comparable with other studies, the use of medication was the first option39,40. One would expect the participants who were referred to physiotherapy to use exercises more often to decrease their symptoms and improve function. However, this was not demonstrated which could be justified by lack of education on the importance of exercise with knee OA and inappropriate exercise prescription resulting in lack of effectiveness and direct the participants to use medications to relief their pain. Hurley et al39 reported similar results on the limited use of exercise as a self-management option. Nevertheless, their participants were aware of more self-management strategies such as ice, knee sleeves, and pacing which might be explained by the increased contact sessions with the physiotherapists compared to the physicians.
The lack of knowledge of knee OA and inability to manage it could also be caused by the inappropriate service delivery process. In Jordan, exercises were not considered core management options for knee OA as recommended by international guidelines24,25. This was demonstrated by the late referrals to physiotherapy and the limited and inappropriate prescription of exercises. A systematic review showed that GP’s beliefs varied from advising complete rest to recommending exercises, still their actual behaviour showed low physiotherapy referral rate41. These results should be considered carefully as they are based on small number of studies and some depended on patient’s reporting of their GP’s behaviour.
Moreover, our participants referred their limited knowledge to the insufficient information provided by healthcare professionals. It is worth noting that many of our participants had basic school education so their ability to read and seek information by themselves was limited. Several studies reported that patients with knee OA lacked the knowledge that would enable them to manage their pain2-5. Lack of education resulted in more pain, depression, and lack of coping strategies42. Therefore, international guidelines recommend providing education individualised to the participant including: knowledge of OA, pacing activities, exercise, weight loss, and assistive technology25.
Our participants’ experience of symptoms with knee OA were comparable to those of other populations worldwide including pain, stiffness, fatigue, swelling, muscle weakness, crepitus, and fear8. Fear included fear of falling, fear of deterioration of OA, fear of becoming a burden8. Our participants depended on their families to overcome these fears. However, there was a sense of frustration caused by this dependence on others. Many studies reported frustration of people with knee OA as a result of limited activity and loss of independence5,43.
Exploring the experiences of people diagnosed with knee OA worldwide, mainly in developed countries, demonstrated activity limitations were similar across populations including walking, standing, sitting, ascending and descending stairs2,3,8,14. Our study showed similar results in addition to restrictions in religious activities as people living in Jordan are mainly Muslims. Xie et al14 reported comparable results from the experiences of participants from Singapore as they have a large Muslim population.
A Few of our participants reported limitation in walking long distances (n=6) and none reported limitation in activities such as getting on or off a bus, travelling, driving, or activities needed for a certain job. Those activities were restricted by knee OA in Singapore14. Also, limitation in work performance was reported by different populations8. However, Jordan has a different culture; most female participants in our study are housewives which is common for women in Jordan and the male participant is retired, the transportation system is not well structured and people have to walk long distances to reach a bus stop thus limiting physical activity. In addition, Jordan has many hills and valleys limiting walking long distances. From the social perspective, families are accustomed to attending many social events. Our participants reported restrictions in socializing where they would depend on family members to help them.
Environmental facilitators reported by our participants included using cars, elevators, and wheelchairs. On the other hand, uneven grounds, cold weather, and service accessibility difficulties adversely affected the participants’ experience. Xie et al14 was the only study to explore environmental factors affecting participants from Singapore and reported similar results.
This is the first study to explore the knowledge of knee OA and its impact on the health in the Middle East and to compare the results with developed countries. The results increase the awareness of healthcare professionals in Jordan on the limitations in delivered services and the importance of education. They also highlight the role of healthcare professionals worldwide in understanding the impact of culture on health when managing people with knee OA from different populations. Using a triangulation method enriched the data. The ICF was used to comprehend the experiences of participants as it provides a common language for research and clinical practice. Therefore, mapping our results to this framework allowed comparability with other studies and both environmental and personal factors were explored which was limited in previous studies. Furthermore, the principle investigator conducted the focus group and interviews which allowed close observation of the participants’ responses and eliciting more responses based on her experience with knee OA. Nonetheless, consensus meetings were held by the research team to interpret the data to avoid imposing previous knowledge on emerging data44.
We had access to one local hospital therefore a convenient sampling method was used instead of the ideal purposive method. Although this is a central hospital in the Capital Amman, the results might not be generalised to the Jordanian population. Moreover, the majority of the participants were middle-aged unemployed females. We aimed to recruit both genders and conducted gender-specific focus groups to respond to cultural sensitivity, to avoid any embarrassment when expressing ideas, and to take into consideration that activities and participation might be gender-specific. However, we were able to recruit one male participant only; which might have biased our results. This could be explained by the culture as men are perceived the main providers for their homes and do not have time to participate in research whereas older women are mainly housewives and have time to spare. Therefore, future studies should explore the perspectives of a larger sample of both genders with a wider educational background and work experiences and in different settings in Jordan.