Dominated by demands of photoprotection

This group comprised four men (one ‘burner’ and three ‘non-burners’) aged between 21 years and 28 years who all described a very high level of photoprotection. Their major motivation for undertaking rigorous photoprotection was their perception of the harmful effects of UVR. The three non-burners feared cancerous lesions and worried about a reduced length of life, whereas the major worry for the one ‘burner’ (participant 15 aged 22 years) was having very painful and unpleasant sunburn reactions. However, for all participants an immediate concern was the effects of UVR on their appearance due to freckling and other pigmentation changes including facial scars following surgery. For example, participant 14, a non-burner (male, aged 21 years), explained, ‘If you take it purely objectively, I don’t think I’m as unfortunate as some skin patients are (effects on appearance). But you still worry about it. Yeah, that’s a main worry.’

People ‘dominated’ by photoprotection had begun sun protection in childhood but described adjusting better to it as they got older and often did not want to think back to earlier stages, describing this as ‘too long ago’. However, participant 7 (male, aged 27 years) explained that at school and college he never used his sunscreen ‘because I wanted to feel normal, that’s why. I didn’t want any questions, or any remarks from friends or people that I didn’t know, and I did not want to look abnormal to anyone else.’ This changed when he had his first surgery to remove a basal cell carcinoma which he described as a ‘reality check’ and ‘wake-up call’ as ‘I was putting myself in harms’ way for no reason…just destroying my own skin.’ From that time he gave considerable emphasis to the risks of UVR and the need for rigorous photoprotection.

All four respondents described having UVR protective film on the windows of their home and car and used a UVR meter to assess risks and identify appropriate environments and locations. They also described well-established behavioural routines for photoprotection. This involved applying sunscreen whatever the season and wearing two or three layers of protective clothing, gloves and a hat or cap with a hoodie or a visor when outside during the day. A visor provides full cover of the face and head and is usually only worn by children but was worn by three people categorised as ‘dominated’. They described a visor as uncomfortable to wear, bulky to carry around, and attracting stares and comments. However, users regarded this as necessary to achieve sufficient protection and regarded wearing a visor as part of ‘going out properly protected’. The one participant in the ‘dominated’ group who did not wear a visor but otherwise engaged in rigorous photoprotection described a visor as ‘suffocating’ and as having negative psychosocial impacts, ‘.totally make me feel abnormal. Just wearing a hat, cap and glasses all the time, I’ve gotten people questioning like mad, so imagine wearing a visor.’ (participant 7, male, 27 years)

Participants ‘dominated’ by photoprotection explained how their practices had shifted from a deliberative action into a routine or ‘habit’ which they now ‘do without thinking, it becomes part of your daily routine’. As one participant observed, ‘I think I’m motivated by keeping myself safe and I don’t want to develop any skin cancers, which is a problem for my condition. But really, rather than motivation it’s something I do just because it’s a deeply ingrained in me and because I’ve been doing it forever.’ (participant 13, male, aged 28 years)

This high level of photoprotection carried considerable personal costs. These included restrictions on choice of job with risks of exposure to UVR forming an important consideration. As one participant (no.14, male, aged 21 years) explained, ‘It’s affected the kind of jobs that I can look for. I only choose something that’s inside in a safe environment and I really can’t go for anything else.’ He now works as a shop assistant in a large supermarket. Other participants were also employed in safe environments, as a barber, in the family takeaway and as a health scientist, rather than doing their job of choice.

Participants also described missing out on social events because they did not want to wear UVR protection or did not regard it safe to go outside even with full protection. For example, participant 13 (male, aged 28 years) explained, ‘I make excuses about not going out with friends and prefer to be indoors between 11 and 4 when the sun is at its highest.’

If going out during the daytime was unavoidable they undertook considerable preparation. As participant 22 (male, aged 26 years) explained, ‘the only times I go out during the day is if I’m going from a car to a building or building to car, or if it’s completely unavoidable….’

This decision in turn cues his usual routine that involves ‘suncream, visor, everything’. He described this as taking him ‘……about half an hour just to get ready because I’ve got to apply my sun cream, then I’ve got to be sure I haven’t missed any areas. I also apply lip balm which is UV protected. Then once I’ve applied my sunscreen I apply my camouflage (to hide scars). I apply two camouflages.’ He also explained, ‘If I’ve got to be somewhere for 5pm I’ll have to leave at 4.30pm which means I’ve got to cover up between (workplace) and the tube station. So, I need the visor that day.’

This group referred to the psychological costs of a high level of photoprotection in terms of being viewed as different or not ‘normal’. They described no longer being upset by stares and questions about their clothing and if people continued to ask questions or make comments, they now felt more confident and able to ‘put them in their place.’ However, they still sometimes avoided situations that might lead to ‘snide remarks’, such as taking a taxi rather than a bus when school children were travelling.

Despite considerable support from family and friends, this group described feeling emotionally distressed about the demands of photoprotection and restrictions on their activities. For two participants the impacts were quite severe, for example, participant 7 (male, aged 27 years) explained, ‘whatever I do XP is on my mind first’ and described XP as ‘affecting me emotionally quite a bit as well.,It’s just you get obsessed and get that depressing feeling. You can’t do much in life.’

Similarly, participant 22 (male, aged 26 years) described ‘feeling down’ about having XP and its effects on his life and got ‘bouts of depression’ about three or four times a year. However, these various adverse effects did not disrupt their high level of photoprotection given their fears of the potential clinical risks.

Resistant to photoprotection

This group comprised 11 participants, aged 20–55 years, with 5 ‘burners’ and 6 ‘non-burners’. All accepted their diagnosis of XP and were aware of the risks of UVR and photoprotection practices. They therefore had the capability to photoprotect but acknowledged a lack of motivation with other priorities.

We identified five people (two men and three women, aged 21–37 years) as ‘strong resistors’ as they described very limited photoprotection that largely reflected their desire to distance themselves from XP and be accepted as normal by others. For example, participant 24 (female, aged 28 years) had experienced several surgeries to remove skin cancers and benign lesions and was particularly concerned about surgery to her face. Nevertheless, she described ‘strong resistance’ to photoprotection and often joined her friends for activities in the sun, did not consistently reapply sunscreen and sometimes went out wearing shorts or summer tops, because as she explained, ‘I just want to be seen like everybody else’ and ‘I think you can just let these things (photoprotection) become you and I don’t want to be about XP. XP is a tiny part of me.’ She therefore sometimes thinks, ‘…do you know what, I’m just going to get on with my life.’

She excused her behaviour at the interview by saying that when she was out she ‘shade hopped’ and also gained reassurance from knowing that the clinic would identify and manage any problems.

Concerns about feeling different and viewed by others as possessing an unacceptable difference was common in this group although their particular circumstances differed. For example, an Asian participant (participant 6, male, aged 20 years) described freckles as highly unusual and abnormal on a person with Asian skin and reported that comments and questions by the Asian community made him feel ‘like an outsider’ which corresponds with the notion of ‘felt stigma’ or feelings of shame associated with an unacceptable difference.22 This response contributed to his stress and loneliness and to a reluctance to increase the obviousness of his condition through rigorous photoprotection.

This subgroup of ‘strong resistors’ therefore described tensions between their desire to be seen and participate as normal, and worries about the effects of UVR without sufficient protection. For example, participant 18 (female, aged 27 years) worries about cancer but often feels ‘a bit left out’ as she can’t go outside at lunch with colleagues. She also acknowledged that although she sometimes wears long sleeves in summer, she does not usually wear a hat or reapply sunscreen which she regarded as greasy and staining. She explained that ‘some days I don’t bother with cream or covering up…Sometimes I think screw it, just go out. Then I think, oh, sugar,….But there’s consequences, just like oh my god.’ Similarly participant 12 (male, aged 26 years) explained that he worries about life expectancy and appreciates the advice and support given by the clinic but still goes out and socialises in the summer ‘…just to make myself feel better really, That’s about it.’.

Concerns about being perceived and responded to in terms of XP led to concealing the condition by reduced photoprotection, the use of a tinted foundation with a lower SPF and reluctance to disclose their condition to others. Reminders to photoprotect by family members were also often described as unhelpful as participant 12 (male, aged 21 years) explained, ‘I just think it’s a constant reminder that I’m different. So that’s why I don’t really like them (reminders).’.

The other six people formed a subgroup of ‘occasional resistors’. They were all men and mainly in their mid-30s to mid-50s. They were not bothered about people knowing about their XP but had gaps in their photoprotection routines, often going outside for short periods without sunscreen. This appeared to partly reflect perceptions of low personal risk if they had lived 20 years or 30 years without major problems. There was also a view that life is uncertain and that exposure to UVR is just one of many risks they might encounter and so not a priority. They therefore preferred to ‘live for today’ and have ‘a happy life despite XP’. As participant 20 (male, aged 55 years) explained, ‘I don’t automatically put on sunscreen everyday even though I know I must….there’s no downsides to sunscreen, so it’s just time or not thinking about it or being too busy, or thinking no I can’t be bothered.’ He later explained, ‘I would rather do things that give me pleasure in life rather than get overly anxious about the ransom to the possible outcomes of not taking enough care.’

Some people referred to specific personal experiences as shaping these views, such as a close relative dying unexpectedly at a young age. Other reasons given for resisting rigorous photoprotection was their questioning the effectiveness of sunscreen or of photoprotection, generally, especially if they had experienced lesions on parts of the body normally covered.

All participants in the ‘resistant’ category thus emphasised the importance of leading a normal life but differed in whether the major influence on their behaviours arose from feelings of unacceptable differentness, or from perceptions of personal UVR risk being outweighed by other life priorities and risks.

Integrated photoprotection

This category comprised five men and five women who represented the full age range from 16 years to 63 years, with four ‘burners’ and six ‘non-burners’. All currently accepted the need to undertake photoprotection, although a few people described struggling initially as the demands of photoprotection made them feel like a ‘sick’ person. However, over time these practices had become ‘automatic’, ‘habitual’ and ‘just second nature’. Photoprotection was therefore not currently viewed as a major practical or emotional burden leading to a ‘non-normal’ life and illness identity but described as ‘just a part of life … It’s just habit now, a routine, what I do….It’s just second nature I think for me’ (participant 19, male, aged 18 years). Similarly photoprotection was referred to as ‘.no hardship to do because I just do it as part of my daily routine’ (participant 16, female, aged 63 years). These participants generally felt comfortable and confident in their photoprotection routines and currently did not worry much about the risks of UVR.

This accommodation to photoprotection was described as occurring in one of two ways. A group of younger people diagnosed in childhood had adapted by spending most of their time indoors and now preferred this. For example, participant 19 (male, 18 years) was diagnosed when 9 years old but began to protect much earlier. Currently his routine was to set off for work at 6:00 when dark and his father collected him later by car. Otherwise he was mainly in the house and preferred being indoors where he played with the computer. Participant 1 (female, aged 45 years) also described her need to keep out of the sun as fitting quite well with her life because she was at home most of the day looking after children.

Others emphasised how they accommodated the requirements of photoprotection without withdrawing indoors. For younger people this was often facilitated by friends or family members who accepted their need to avoid UVR and adjusted activities to ensure that they were not made to feel different or excluded.

‘….especially when we’re going out and there’s a place that’s not safe and then they all understand we probably need to move somewhere else and not do what everyone wants to do, which is to enjoy the sunlight.’ (participant 9, male, aged 38 years)

Family members often organised activities when the sun was low, encouraged indoor sports and going on holiday in the UK rather than to hotter countries. Similarly, partners might adapt their roles, as participant 10 (male, aged 39 years) explained,

‘I’m the one who would normally be staying in the car (with window film).and the missus would actually go into the shops, into the street to find whatever we need to get.’, ‘My wife tends to do the outdoor activities with the kids, and I do the indoors.’

For older people their accommodation of photoprotection had often become easier through their long-standing experience of XP. As participant 16 (female, aged 63 years) commented, ‘Because I’m this great age now, I’m used to it….it’s just part of my daily routine now….the only time it impacts is if I’m invited to an outdoor event and either I don’t go or wear a hat and stick to the shade….but that’s the only time it impacts you. But I’m used to it now’ (laughter).

For older people, the personal social costs of photoprotection were also often facilitated by changes in what they expected and wished to do, as participant 21 (male, aged 62 years) explained, ‘When younger I wanted to sunbathe and go on holidays with friends to hot countries but as the years went by I got used to it. Now it doesn’t bother me.’

Older people who had integrated photoprotection in their lives also described rejecting any stigma associated with photoprotection, with any negative views and comments described as ‘other people’s problem, not my problem’.

People who had integrated photoprotection into their lives described feeling confident that their routines provided adequate personal protection. However they sometimes acknowledged scope for improvement, including the need to apply sunscreen more regularly and give more emphasis to UVR protection on cloudy days. They may also have occasionally not been aware that their photoprotection practices were not sufficiently rigorous as these had become well established habits they no longer thought about.