The characteristics of the 216 women providing relevant comments for qualitative analysis are shown in Table 1. Between 1996 and 2011, these women generally moved from being partnered to being single. While most of the women lived in a home, and still lived in a home in 2011, there was a general move into retirement villages/Nursing homes/hostels. By 2011, >60% of women still drove themselves for their main form of transportation. There were high levels of eye related chronic diseases (cataracts, macular degeneration, glaucoma) over time. Almost 70% of women who returned a survey in 2011 had had eye-related surgery previously. While scale scores for mental health remained relatively high between 1996 and 2011, there was an overall reduction in general health and physical functioning.
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Of the 216 participants who provided one or more free text comments, we identified three broad trajectories of driving over time (see Table 2). The first trajectory involved participants who continued driving, and who described access to treatment of eye disease and the instigation of driving restrictions as vision deteriorated. The second trajectory involved participants who ceased driving, and who attributed this to deterioration of vision. The third trajectory involved participants experiences of eye disease, but who attributed the cessation of driving to other health conditions.
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Table 3 provides an exemplar case study for each trajectory.
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Themes
Our analysis takes into consideration that the prevention and management of chronic eye conditions being an important part of overall health that promotes driving. Free text comments captured participants experience of deteriorating eyesight due to eye disease and its impact on driving capacity and subsequent quality of life. Our findings identified four themes:
- Access to treatment for eye disease promotes driving independence and promotes quality of life
- Driving with restrictions for eye disease still enables community engagement
- Driving cessation due to poor vision leads to significant lifestyle changes
Illustrative quotations are identified by survey point and the nature of eye disease.
Access to treatment for eye disease promotes driving independence and promotes quality of life
Participants commonly reported the onset and/or ongoing experience of MD, cataract, glaucoma and other eye diseases. Central to this theme was access to specialist treatment for eye disease and the link to ongoing adequacy of eyesight that ensured independence with driving.
I have macular degeneration and receive regular injections of Lucentis - so far am allowed to drive. (Survey Identification number (S)52, macular degeneration (MD))
Another woman reiterated:
My macular degeneration is being closely monitored. I have Lucentis Injections in both eyes monthly – but I am still reading writing and driving, (S47, MD)
While participants reported that treatment wasn’t always as effective as they hoped they were pleased to be able to continue to drive for as long as possible.
My biggest problem is my dry eyes…but I passed my driving test with a good report. (S31, MD)
Another woman said:
I had cataract operations on both eyes - before things got to the stage where I could not pass the eye test for my annual drivers’ licence. (S133, cataract (C))
Some participants’ eye conditions were diagnosed late, or they experienced complications from their eye treatment which led to concerns about their continued ability to keep driving.
About two years ago I had iritis which was not picked up. As a result, I have permanent damage to my eyes. This has curtailed my activities, but I can still I drive. (S10, C)
Unfortunately, my eye became badly infected. Never have I suffered such pain. Needless to say, no activities since it happened. I am hopeful that I shall be able to drive again. (S5, MD)
Successful treatment for long term eye disease meant that many participants were able to continue driving, as well as other valued activities.
I am 77 years old and have had trouble with my eyes particularly distance. Recently I had cataract operations on both eyes and now I drive my car without glasses too. (S27, C)
Cataract operations on both eyes were great success and I can read normal print without glasses. I still drive my car around local area. (S45, C)
Many participants reportedly experienced improved vision after treatment, especially cataract surgery, which subsequent lead to feelings of greater confidence with driving.
Removal of cataracts on both eyes made a huge improvement in general confidence - as well as enabling me to drive again at night, read music and small type with ease and more. (S62, C)
Since the last survey I have had cataract operations (both eyes) which has made me much more confident about driving, especially at night. (S66, C)
All participant expressed that driving contributed to greater feelings of meaning in life. For many the ability to drive was linked with independence and feelings of “freedom of lifestyle.” (S110, C)
What more could I want at my age. My driving license has been renewed for another 3 years, so I am independent. I am making the most of it while I can. (S50, MD)
Indeed, many participants expressed concern about the prospect of losing their license in the future and how they would “manage” (S164, G) when driving was no longer possible.
I was recently shocked and disappointed to find that my peripheral vision is deteriorating. Should it continue to do so -to the extent that I can no longer hold a driving licence, then my lifestyle and my independence will be severely affected. (S183, C)
Many participants reported that driving allowed them to care for loved ones and provide a service to the community.
I had cataracts removed from my eyes in July and I can now see without glasses. I care for my husband who is 97 years old, and I do all the driving and shopping. (S117, C)
Two cataracts forming, glaucoma being treated and macular degeneration. I do a lot of hospital and nursing home visitation and taking a few people out for short drives. (S210, C)
Overall many participants valued passing their eye-sight and driving tests as they aged.
Macular degeneration of eyes. Right eye: Ok but now developing a cataract. Left eye: Centre blindness due to scar on retina, but still managed to pass (but only just) eyesight test for driving license. (S127, MD)
Driving with restrictions for eye disease enables community engagement
All participants valued the opportunity to keep driving despite the experience of formal or self-initiated driving restrictions. Indeed, many participants relied on the opinion of the others such as a family member or their local doctor when deciding when to consider ceasing driving or implementing restrictions.
I realise I am slowing down. However, my daughter does not query my driving, nor does my doctor. (S22, C)
Many participants reportedly self-initiated restrictions such as only driving in the daytime, in local areas or in less demanding situations as their eyesight deteriorated.
Macular degeneration but ongoing injections still holding the sight in one eye. Still driving but only when I know exactly where I'm going as I can't read the signs early enough. Haven't driven at night for some years now. (S70, MD)
My health remains stable. I continue to be involved in many activities. Even though I have a full driver licence I choose not to drive at night. (S102, C)
I have had an eye operation to remove a Cataract. Waiting to get the second eye done, I gave up driving. I don't think I will drive again because the heavy haulage trucks on the road. (S204, MD)
Other participants reported the driving restrictions were implemented following formal driving tests.
Macular degeneration in my left eye. I passed my driving test – restricted to 100km distance. (S120, MD)
Alongside reported deterioration in eyesight participant also reported that advancing age and other health conditions caused them to self-restrict their driving.
I have just turned 90! I still drive my car - but not at night. Nor do I go far - just to near suburbs. (S22, C)
I have recently developed several fractures in the spine causing severe pain in lower spine and buttocks. I have eased driving my car because of drugs for pain. (S4, C)
As participants eyesight deteriorated, many reportedly relied on family and friends to drive in complex driving scenarios.
Neither my husband nor I like to drive at night, so if necessary, a family member comes to the rescue. (S29, C)
I drive myself when the distance is short reason is simple, otherwise my daughter drives me. (S205, MD)
For those participants who reported they temporarily ceased driving while waiting treatment there was the common experience of reduced activity and the need for assistance with ADLs.
I am waiting for an operation to remove cataracts on my eyes. This means that I am unable to drive at present. This limits my mobility. (S105, C)
I have had an operation on my eye. A cancer on my lower eyelid and plastic surgery from my top lid. I have not been able to drive for over a month so have needed help with shopping. (S130, other)
Driving cessation leads to significant lifestyle changes
Over time many participants reported they were no longer able drive due to poor vision or other health conditions such as pain, cognitive decline, poor mobility, and cancer.
I have glaucoma and was operated on for it in 1963 and could not pass my eye test to continue driving when I turned 75 last year. It was a blow to me but am getting used to the situation now. (S182, G (glaucoma))
I have recently developed several fractures in the spine causing severe pain in lower spine and buttocks. Ceased driving my car because of drugs for pain. (S4, C)
Participants reported varied reasons for self-initiated driving cessation such as increasing age, loss of confidence and “feeling flustered in heavy traffic” (S50, MD), or finding driving difficult.
Due to macular degeneration in one eye- during the past three- six month, I have found driving more difficult- despite getting an unrestricted license in the past twelve months- as a result, I have had to give up driving. (S41, MD)
My eyesight seems greatly affected- I have given up my driving licence as I am now 90 years old and not quite so confident (S177, C)
Many participants who ceased driving due to poor vision in an earlier survey later reported being “legally blind” (S140, AMD) in a later survey. The experience of being legally blind was commonly linked with not being able to continue valued activities such as reading and craft.
I have had to sell my car, have had to give up sewing, knitting, driving and a lot of things I used to love to enjoy. (S64, MD)
In response to not being able to drive many participants reported they accessed alternatives to driving such as getting a scooter and using public transport such as buses and trains or, ”Community Transport.” (S102, MD)
I have lost the sight of my right eye during an operation. I don't drive a car now, I have a scooter. (S90, C)
I have had macular degeneration for last 3 1/2 years. I now need magnifier to read. Have had to re-learn how to crossroads, catch buses, etc. (S95, MD)
For some the decision to cease driving was made over a period as they experienced deteriorating vision or ailing health.
I have Macular Degeneration which is increasing. Although I still have a driver's licence I rarely drive (can't see well enough). I mainly travel by public transport and in friends’ cars. (S64, MD)
I have macular degeneration (dry mildly). I don't walk as far as I used to, and I miss that. I had a serious fall late December and my shoulder is improving slowly. I've curtailed my driving (car). Actually, I am thinking of handing in my licence, and purchasing a 'golfer'. (S122, MD)
A few participants reported that the experience of participation in a car accident led them to giving up their license, even when most reported they weren’t at fault.
I have been severely depressed as my car was a complete write off. I haven't bought another car, as I haven't the confidence to drive anymore! (S180, C)
Others struggled finding alternatives to driving and having to rely on others.
We are frustrated by the lack of public transport, as I no longer wish to drive in busy cities. (S147, C)
The macular degeneration has stopped me driving my car and have to rely on others for transport as we don't have public transport. I spend most days at home. (S14, MD)
My biggest problem is my poor eyesight, because of which I have had to give up driving and now have to rely on my husband and family members and friends. Also because of my sight I need help shopping, etc. (S106, C)
Lost independence was grieved by many and to the expereince of negative emotions such as altered mood and feelings of grief.
My eye problems have become worse meaning I can’t drive any more. I have become more dependent because of this – I don't like this situation. (S38 MD)
I've had a really horrible year - so far. My independence has been taken away from me, because of a bad case for Macular Degeneration, blind within 2 days. Had to sell my car. (S5, MD)
Participant also linked not being able to drive with significant social changes, especially feelings of greater social isolation due to not being able to visit people or engage within the community.
Since last communication, I have lost my Driving Licence (after 60 years) I miss the easy availability and independence enormously and am now lonely and miserable and dependent on others so much. (S24, MD)
I have given up my car and this has taken away a lot of my independence. I now need to rely on others to get around and find this is restricting my social network. (S9, MD)
However, the impact of driving cessation and feelings of isolation and lack of access to public transport were exemplified among those living in rural and remote setting .
As I can no longer drive, I am very reliant, on others as I live 30km from the town. Trips are few - far between. (S118, G)