Table 1.
Factor arrays (item by ranked position)
| F1 | F2 | F3 | F4 | F5 | ||
|---|---|---|---|---|---|---|
| 1 | At first, most parents think they won't be able to cope with a child with cystic fibrosis (CF) – but time and again, they find they can | +4 | 0 | −2 | 0 | +3 |
| 2 | Nearly all men with CF are infertile | −3 | −3 | −3 | 0 | 0 |
| 3 | People can still die very young from CF | 0 | +5 | −2 | +5 | −5 |
| 4 | Modern equipment means that children with CF have a lot more freedom than they used to and live a more normal life, e.g. they can go on sleepovers | +3 | 0 | +3 | +2 | +4 |
| 5 | The typical person with CF is now a fit individual with minimal if any symptoms, who happens to have a problem called CF | +3 | −2 | 0 | −2 | +5 |
| 6 | Following the introduction of new treatments and better disease management, quality of life has dramatically improved for people with CF | +3 | +1 | +5 | +4 | +1 |
| 7 | CF can be isolating because of the risk of cross infection from other people with the condition | 0 | 0 | +3 | −1 | −1 |
| 8 | Children with CF undergo numerous treatments, face frequent hospital visits and some have repeated medical procedures. | +1 | +4 | 0 | 0 | +2 |
| 9 | Treatment for CF often includes physiotherapy for 20 minutes once or twice a day at home | +2 | +2 | +2 | +1 | +1 |
| 10 | You can't know how badly a child will be affected with CF before it is born | +1 | +4 | −1 | +3 | +4 |
| 11 | Women with CF who get pregnant can experience more problems with their health than other women | −2 | −1 | −2 | +2 | +1 |
| 12 | Women with CF have greater difficulty getting pregnant | −3 | −4 | −3 | −1 | −3 |
| 13 | Research suggests mothers of children with CF are more prone to decreased marital satisfaction and sexual intimacy | −4 | −1 | −4 | −3 | −2 |
| 14 | Many couples whose first born has CF go on to have other children | +2 | 0 | −3 | −3 | −4 |
| 15 | Many adults with CF enjoy a good quality of life | +4 | +2 | 0 | +3 | +1 |
| 16 | It can be difficult for a woman to have career and raise a child with CF | −1 | +1 | 0 | −1 | −2 |
| 17 | More than a third of adults with CF are married or living with a partner | +2 | −2 | 0 | −1 | −2 |
| 18 | People with CF may have to stay in hospital to be given antibiotics intravenously | 0 | +3 | +2 | −1 | −1 |
| 19 | Ultimately lung transplant is often necessary as CF worsens | −2 | +3 | 0 | +1 | +1 |
| 20 | Many parents believe CF has made their family stronger | +2 | 0 | −4 | −3 | −1 |
| 21 | Many adults with CF have jobs or study, and are involved in a wide range of professions and occupations | +2 | −2 | +1 | +1 | −3 |
| 22 | If people with CF have children, there is a risk that they will be left without a mother or father | −2 | −1 | −1 | 0 | 0 |
| 23 | Negative attitudes from others can create extra difficulties for people with CF | −3 | −4 | −2 | −3 | 0 |
| 24 | As adults with CF get older, they are prone to complications such as diabetes, liver disease, pneumothorax, osteoporosis, and incontinence | 0 | +2 | −3 | +2 | +2 |
| 25 | The time and effort spent on the treatment regimen for a child with CF can have an impact on other family relationships | +1 | +3 | −2 | −2 | 0 |
| 26 | The brothers and sisters of children with CF often feel they are missing out | −1 | +3 | +1 | −2 | +3 |
| 27 | The improvement in outlook for people with CF has been achieved by increasingly complex and demanding treatments | 0 | 0 | +4 | 0 | +2 |
| 28 | Up to half of patients with CF currently waiting for a lung transplant will die before a donor becomes available. | −3 | +2 | +2 | +1 | −1 |
| 29 | Adolescents with CF whose condition is not severe say they have a good quality of life | +3 | −1 | −2 | +2 | 0 |
| 30 | Many people with CF believe it has made them stronger people, and given added meaning to their lives | +1 | −3 | +1 | −4 | 0 |
| 31 | The improvement in outlook for people with CF has only been achieved by increasingly expensive treatments, which the NHS is expected to pay for | −4 | −3 | 3 | −5 | −2 |
| 32 | One challenge for people with CF is managing variability in their health on a daily basis | 0 | −2 | +1 | +3 | +2 |
| 33 | Gene therapy for CF does not appear to be a realistic option in the near future | −2 | +1 | +3 | −2 | −3 |
| 34 | Half of patients with CF who have a lung transplant are still alive ten years later | −1 | +1 | +1 | +3 | +2 |
| 35 | Increasing numbers of women with CF are having children | −1 | −3 | −2 | +2 | −4 |
| 36 | Research shows children and young people with chronic conditions like CF are much more likely to develop emotional and behavioural difficulties. | −1 | −2 | −1 | −2 | −4 |
| 37 | Many treatments, that either target the underlying defect in CF or its direct consequences, are currently being developed | +1 | +1 | +3 | +1 | +3 |
| 38 | People with CF have to pay just over £100 a year for prescriptions | −5 | −5 | +2 | −4 | −1 |
| 39 | Children born with CF now are likely to live well beyond 40 | +5 | +2 | +1 | +4 | +3 |
| 40 | Because many people with CF are living longer, they may increasingly be cared for by their children or partners, rather than their parents | −2 | −1 | −5 | 0 | −3 |