Table 1 Expectations and experiences of total knee replacement in older adults

Sample

27 patients with hip/knee pain & disability.

18 participants with knee osteoarthritis listed for TKR.

25 patients on a waiting list for TKR.

17 patients who were potential for TJA (hip or knee) – but did not want the procedure.

94 black people aged 50 – 89 with knee osteoarthritis.

Data Collection

In-depth interviews.

Semi-structured interviews.

In-depth Interviews.

In-depth interviews.

Semi-structured interviews.

Setting

Survey was used to identify a sample of participants in Somerset, UK.

Patients listed for TKR at a specialist orthopedic hospital in UK.

Patients sampled from 3 orthopedic surgeon's waiting list in UK.

Participants recruited from an initial survey, conducted in Toronto, Canada.

Participants were recruited from a church or senior centre in northern Manhattan, USA.

Concepts

Experience of pain

Most had experienced pain and disability for one or more decades.

Participants found it difficult to describe their pain – also reported functional loss.

Crippling and severe pain and limited mobility was identified.

_____

____

Perception of health professionals role

Did not want to bother the GP with their symptoms.

Doctor was seen as the expert.

Believed the surgeon was the expert.

Patients relied on the doctor to help them make a decision about surgery.

Doctors were seen as the gatekeepers to TKR surgery.

Expectation of treatment

Participants assumed they would not be considered as appropriate candidates for surgery because of their age.

Most participants felt that TKR surgery was the only cure.

Participants accepted that there should be a waiting list for TKR, but felt several other factors really determine who gets TKR (i.e. weight & age).

Participants believed they needed to be in constant pain and unable to move before they would consider surgery.

Most patients expressed the belief that their body should remain intact and they did not want surgery.

Expectation of condition

Participants perceived their symptoms as associated with normal aging.

Participants believed their OA would only get worse

_____

Participants had the expectation of pain with age.

OA was natural, inevitable, a sign of aging or deterioration.

Social Context & social support

______

A person's social network was an important factor in constructing the need for TKR.

_____

Participants often drew on lay sources of TJA information.

______

Comparison with others

____

____

Believed that there are people worse off than them and they should have priority for surgery.

Participants believed that there are people worse off than them.

Patients believed the economic status of blacks & whites was the reason black people did not have TKR.

Coping strategies

Relied on over the counter medications and exercise to relieve pain.

______

____

_____

Belief in god was important with regard to the outcome of surgery.

Second order Interpretation

Patients viewed their symptoms as a natural part of aging, and were reluctant to seek care or have surgery.

Patients make decisions about surgery based on their perception of symptoms, and depending on their life environment.

Patients have the perception that "there are probably people worse off" and they should have priority for surgery.

"The taken for granted assumption that one needs to be in constant pain and virtually unable to move before seriously considering surgery".

Participants had negative perceptions of TKR, because of the risks they associated with surgery.

Sample

9 patients who had TKR – but had been waiting for up to 2 years.

9 patients after TKR, 9 patients on waiting list for hip replacement.

5 TJA patients and their spouses after surgery.

25 patients 3 months before TKR – 10 interviewed 6 months after TKR.

17 patients who were potential for TJA (hip or knee) – but they did not want the procedure.

Data Collection

Un-structured interviews

Un-structured Interviews.

1 focus group – to discuss their needs prior to and following TJA surgery.

In-depth interviews.

In-depth interviews.

Setting

Participants were contacted with a letter after surgery in a hospital in New Zealand.

Participants were recruited at a hospital in Sweden.

Participants recruited by telephone (were already scheduled for follow up visit) in USA.

Patients sampled from 3 orthopedic surgeon's waiting list in UK.

Participants recruited from an initial survey, conducted in Toronto, Canada.

Concepts

Experience of pain

Living in constant pain & hurting with everyday activities.

Pain is described as dreadful and extremely disabling.

Still felt extreme pain after surgery.

Still had continued pain and immobility after surgery

Participants viewed their pain as bad, but not "'bad enough" for surgery.

Perception of health professionals role

Had a powerful faith in health professionals.

Needed to establish a trusting relationship with the doctor.

Nurses and physicians were acknowledged as important sources of information & support.

Participants did not criticise the surgeon or the surgery.

Participants wanted more information from their health care provider.

Expectation of treatment

Some viewed surgery as the only way to carry on leading a normal life.

______

Believed they would be back to normal (walking, dancing) at 56 weeks.

Patients acknowledged that TKR was major surgery and it was natural to feel pain.

Participants were concerned about the efficacy of TKR surgery.

Expectation of condition

______

______

_____

______

Participants perceived pain as natural, expected with old age.

Social Context & social support

Participants revealed that "accepting help" was a condition necessary to maintaining independence in the long run.

Having a sense of underlying support (friends & family) helped preserve continuity.

Spousal support was important during the recovery process.

Participant's perception of outcome was related to certain situations in their life (i.e. moving from a lonely neighbourhood).

Patients drew on lay sources of information.

Comparison with others

_____

_____

_____

Felt the outcome was good when they compared themselves to others worse off than them.

Relied on accounts from others who had undergone TJA surgery

Coping strategies

Having faith and a positive attitude (stoicism) allowed participants to endure the pain.

Respondents preserve the sense of living a full life by contending with what they could do.

Participants had to make adjustments to their home (putting on socks, going to bathroom) to cope after surgery.

_____

Participants 'accommodated' the pain, by making adjustments and coping.

Second order Interpretation

Determination, optimism, and trust sustained participants through the entire TKJA process.

Participants "put their trust in surgery to alleviate their suffering, but find it hard to live in the uncertainty inflicted by the indeterminate waiting time".

"Preparing spouses for the role changes that occur following surgery could help patients and spouses establish realistic expectations of the recovery process".

The TKR outcome was viewed positively or negatively when viewed in relation to the participant's life context or environment.

"Symptoms and information sources were the two main factors influencing patient decision making".