Twenty nine participants were interviewed at baseline, twenty three agreed to be re-interviewed post-rehabilitation, and their characteristics and pseudonyms are shown in Table 1. The only difference between those who agreed to be re-interviewed and those who declined was that the three Black African interviewees declined to be re-interviewed.
Supporting quotations are given in Table 2 and a pictorial representation of how these affect health beliefs and subsequent behaviours in Figure 1.
People were uncertain and bewildered about how, why and when their knee pain started. Most attributed knee pain to mechanical "wear and tear" of occupational, sporting and leisure physical activities, which led them to believe knee pain was an inevitable consequence of normal ageing. Some people tried to identify a specific incident as the start of their pain, but their recollection of the incident was often vague and they struggled to convince even themselves that this was the start of their problems. Frequently a familial predisposition for joint pain was mentioned with reference to a close relative, often female, who had "arthritis" or "rheumatism". Being overweight was also thought to cause or exacerbate pain.
Typically, people described episodic pain that increased gradually over several years. Pain varied greatly within and between participants, described variously as "a niggle", "not too bad", "murder" or "agony". Often weightbearing activities brought on pain, but people with advanced disease also had pain while sitting or in bed. The unpredictability of pain bewildered people.
Function limitations and disability
Pain, muscle weakness and fatigue after common activities of daily living impaired people's physical functioning and mobility. They stoically tried to carry out their normal activities, but often had to adjust or avoid activities (e.g. showering instead of bathing) in order to cope with their limitations and maximise their independence, and depended on family and friends for help with essential domestic and social activities (e.g. shopping, housework, gardening, transport, bathing).
Psychosocial and emotional
Limitations in functioning and the need for help made people feel frustrated, angry, depressed, embarrassed, incapacitated and a burden to others, and increased worries that the ultimate outcome would be severe disability, immobility and dependency.
Our inclusion criteria meant all participants had consulted their GP about knee pain. People were often told the problem was due to wear and tear and getting old. Few could remember receiving information or advice, and they perceived knee pain was considered a benign condition that did not have a high priority, which confirmed their own beliefs and attitudes. No one had been offered a self-management programme. Management was seen as ineffectual, and consequently few were regularly consulting their GP despite on-going problems.
Management usually involved people being offered palliative medication. People used analgesia reluctantly, usually when pain was severe or before/after activities that exacerbated pain (e.g. shopping, gardening). They were concerned about side effects, becoming addicted and worried that taking it regularly would reduce its effectiveness. People taking medication for common co-morbidities (e.g. diabetes, cardiovascular, respiratory disease) wanted to limit the medications they were taking, preferring to omit analgesia and cope with pain rather than omit medication for co-morbidities seen as more serious, over which they had little control.
People reasoned that while medication might alleviate symptoms, surgery was the only way to correct structural joint damage, eliminate pain and restore mobility, function and independence, but they wanted to delay surgery as long as possible. Others were more sceptical and frightened of surgery. Whether people held positive or negative expectations of surgery was strongly influenced by the exp e riences of family, friends, media reports or presence of co-morbidities that contra-indicated surgery.
Awareness of treatment options other than medication and surgery was poor. Many people were using alternative remedies (e.g. fish oils, glucosamine, herbal remedies, acupuncture, osteopathy, copper bracelets, etc) on the recommendation of family, friends, media reports and advertisements. Some people found these helpful, others were sceptical but often continued to use them in the hope they would prevent or delay progression.
Intuitively exercise and physical activity were perceived to keep people supple, mobile and maintain functioning. At the same time people associated activity with increasing pain, which they worried might accelerate joint damage. As a result of this confusion, and in the absence of any advice about what they should (not) be doing, few people were exercising and most were refraining from or avoiding activities.
Often people who thought excess body weight increased stress on their joints, exacerbating pain and damage, tried dieting and exercising to lose weight, but activity-related pain impeded attempts to control their body weight.
People hoped rather than believed their symptoms would improve. They reasoned that joint damage was irreversible and likely to deteriorate without surgical correction. These beliefs arose from people linking the cause of joint pain to their biography, and the influence of other people's experiences and beliefs.
Supporting quotations are given in Table 3, with pictorial representation of how these affect health beliefs and subsequent behaviour in Figure 2.
In line with current understanding, the rehabilitation programme informed participants that the causes of chronic knee pain are often unclear, unidentifiable and multi-factorial, usually related to joint injury, previous activities, excess body weight and genetic predisposition. No attempt was made to identify the causes for individual participants' knee pain. Consequently, the programme did not alter participants' reasoning behind the cause of their pain.
Impact of the rehabilitation programme
Two participants were "disappointed" in the programme, experiencing little or no benefit from. This may have been a factor in the participants who withdrew from the study. The small number of people who found the programme ineffective makes it difficult to explore the reasons for ineffectiveness, but the two participants believed themselves too old or their symptoms too severe to enable them to benefit from exercise, and were sceptical and pessimistic about all interventions.
Reduced pain, improved function, ability
Most participants found the programme "interesting" and "informative", bringing "small" to "life-changing" improvements in pain, function (i.e. walking, domestic and social activities, getting on and off buses, driving). They felt less tired and had a general sense of better physical well-being.
Improved psychosocial well-being
The programme reduced anxiety and fear of activities people previously thought might increase pain, increased confidence in their ability to exercise safely and effectively, and generated a sense of self-achievement.
Return to normality
The physical and psychological improvements returned a degree of normality to people's lives. Some returned to previous activities they had begun to avoid for fear of harm, or take up activities to increase their level of physical activity.
Reasons for improvements
Increased knowledge and understanding
Receiving information and practical advice about what (not) to do, and the opportunity to discuss things that concerned and confused them with a healthcare professional, helped people appreciate their problems and what they could do to address these. In particular, they learned about the role of inactivity and excess body weight in development of knee pain, and how exercise and losing weight could control symptoms.
Participation in the exercise regimen allayed people's fears, confusion and anxiety about the safety of exercise and showed them it was beneficial. Its successful completion convinced participants that exercise was an effective self-management strategy they were capable of implementing and a viable alternative to medication that might slow deterioration and delay or avoid surgery.
People appreciated being able to discuss and assimilate information without the time constraints of medical consultations. Participants, especially elderly participants, felt familiar comfortable and at ease in the hospital environment. Although the clinical benefits people derived from the rehabilitation programme were similar regardless of whether it was received individually or in small groups , participants who received group-rehabilitation thought meeting, sharing experiences and the support derived from fellow group members was beneficial, and that observing improvements in others was a source of encouragement.
The care, support and guidance participants received during the informal discussions helped build a trusting, collaborative partnership between patient and physiotherapist. This increased participants' confidence and trust in the physiotherapist and belief in the rehabilitation programme. The interpersonal qualities and professional skills of the supervising therapist were considered as important to the success of the programme as the content of the programme itself.
People accepted exercise wouldn't eliminate their problems, but they understood how they could use it to manage their problems better. They were planning to continue their home exercise programme and use common physical activities (walking, gardening, housework, leisure activities) as informal exercise. Many were concerned their efforts might be thwarted by worries about personal safety, lack of facilities or environmental issues such as inclement weather. However, their greatest concern was losing the ongoing support of the physiotherapist would undermine their motivation to exercise, and they expressed a desire for on-going support.
People continued to mention the incurability of knee pain, thought deterioration was likely and that surgery was still considered the most effective way to improve pain and function. However, increased understanding, positive experiences of exercise and influence of the physiotherapist engendered greater optimism about the prognosis, and generally people felt better able to cope with their problems.