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MEDICAL / PSYCHOSOCIAL TOPIC: Gender and Survival
"…young men have a greater survival rate than young women." This paper discusses the differences in attitude to living with CF by young women (YW), and young men (YM), and the subsequent consequences of these attitudes. It argues that young people with CF (YPWCF) identify with the social construction of male and female in general society, and this very normal behaviour subsequently affects how an individual approaches living with the disease. This in turn accounts for some of the difference in morbidity and mortality rates. The literature shows that YM have a greater survival rate than YW. Rosenfeld (1997)2 found that between 1-20 years females were 60% more likely to die than males, but beyond 20 years the survival rates were not significantly different. The greatest difficulties seem to occur during the teenage years. THE STUDY From the interviews, even allowing for severity, there was a different experience of CF according to gender. The greatest difference in attitude and approach to living with CF was found in the areas of: the meaning of life, death, career, body image and regimen. 1. THE MEANING OF LIFE "…an appreciation of life and the need for happiness…" The YW were more introspective than the YM. They expressed an appreciation
of life and the need for happiness: The young men expressed the meaning of life in different terms. Sixteen of the 19 (84%) mentioned work as part of the meaning of life, compared to 8 out of 21 (38%) young women. Their aims on life were concerned with activity: "Living to the most you can, do everything you can possibly in life. YM were likely to want to be more active, and less reflective, and they did not refer to health issues which was a frequent concern of the YW. The likelihood of CF affecting the future and causing uncertainty was expressed by 57% of women but only 21% of YM. Conversely only 21% of YW compared to 52% of men felt that CF would not affect their future. 2. DEATH "…the level of severity of the disease effected attitudes." All the YP in the study were aware of their reduced life expectancy and as expected the level of severity of the disease effected attitudes. Those who had not been in hospital had a greater sense of control over their disease, but it was still an issue across all health levels, and was affected by gender. Young women were more introspective than the young men. Most (YW) said they 'don't worry' and they 'try to forget about it' but went on to talk about fear and the effects of friends dying: "It's really hard for me, they've gone downhill so quickly "One minute we were going out and having fun, the next minute she
was really sick and dying "...CF people don't really live much further than their twenties,
late teens and I just always thought, oh well once I get to 21,22,23 I'll
probably be dead... The young men frequently said they 'don't think about it'. One young man talked about his depression and fear when the first person he knew died, but has since approached the concept of death and dying philosophically: "I don't think about it much though. It's too deep for me." [M,17,HL2] When asked if his experience of the death of a large number of friends would affect his future outlook, one YM replied: "I don't think so any more. I just, I mean, there's been so many, Another participant had lost 2 brothers to CF and expressed shock when the youngest died, but he has coped with this by 'putting it to one side' and 'not worrying': "It hit me really hard, but you know, just go over that hurdle and
keep going. Another said: "I don't know, maybe I'm an emotional rock or something (laughs)
I've got no idea, just I choose not to think about it. I mean I'm not
the type of person to go out of my way to worry about my self 'cause I've
got too much on my plate. I don't know whether it's subconscious or what, The difference between the 2 groups was clear. Many, not all, of the YW expressed feelings of depression and fear and an uncertain future. Most of the YM acknowledged that they were 'hit hard' but did not want to invest further emotion in the issue. This allowed YM to invest in the future in ways that were different from many of the YW; with a desire for greater activity, and a stronger sense of the future. 3. CAREER "I was looking to more part-time work due to my CF....I'd need more
time to physio and to keep my health, because I would have to put in so
much at work and not wanting them to know I had CF. Health was less of a consideration for the YM. Although most thought CF would affect their career and life options, they felt they could manage: "Some people choose their career around the fact that they've got
CF, but I'm not bothering to. Even where many YM thought CF may cause difficulties in their working lives most did not let this interfere with their career choice. By comparison many YW were concerned about their health which was said to be more important than career. 4. BODY IMAGE "For young women attractiveness was equated with slimness…" This theme relates to the differences between the socially valued body shape for men and women3,4,5. For YW attractiveness was equated with slimness and it was desired by nearly all. Most were not concerned that they were thin to very thin. One YW summed up the female attitude to body image when describing her very thin sister who has CF: "She's got a very nice figure, good figure yeah." [F,20,HL1] "For the young men the emphasis was on strength and power…" For the YM the emphasis was on strength and power, increased muscle strength and weight was desired by all: "It gets me down in 2 ways, compared to everyone else I'm short, then I've got the added bonus of being really thin.....the tops of my legs compared with some, it's like two of my calves would be one of theirs. That's a real hassle, plus the fact that girls don't exactly go for little scrawny guys." [M,18,HL3] I: So you'd like to be a bit heavier? The desire to exercise frequently and build strength was about expectations of masculinity. When asked if he would like to be bigger, one YM replied: "Yeah, I would, a lot. I mean it's a combination of body image and
strength "…have negative implications for young womens' health, So attempts to achieve the perceived socially desirable body image is likely to have implications for morbidity and mortality. Although unintended the consequences were likely to have negative implications for YWs health, and a positive impact for YM. 5. REGIMEN / SELF-CARE "…young men are more likely to enjoy sport." The overall compliance rate with the regimen was not high, 7 out of 40 YPWCF followed the suggested regimen. The gender differences were marked. YW were less likely to use health control measures than YM. They were also markedly less active, which is associated with gender identification. Studies have shown that YM are more likely to enjoy sport. Gender identification and greater activity was probably also associated with a higher calorie intake by YM.) A. Exercise Most YW's views were consistent with their non-CF peers, which is a negative view of exercise and sport6 even though most were aware that lack of exercise is likely to negatively affect their health. According to the literature male embodiment involves expressing bodily power and strength through physical activity. The YMWCF were consistent with their non-CF peers, and this happens to have positive consequences. Many YW said that exercise would be good for their health but stated that they did not actually exercise: "I hate sport...I've never been a sporty person, I just don't like
it. "Well basically I just can't be bothered. I should but I just can't be." [F,20,HL1] A number of YW had tried to exercise on a regular basis but had not been able to sustain it. (This was the case with some YM but fewer in numbers): "I don't know the only thing I really can't do is a lot of exercise...I
cough a lot more during the day too. So doing exercise and stuff sort
of puts me off because I know I'm going to cough too much A smaller number of YW enjoyed exercise. Of those who did, some attended aerobic classes 3-5 days a week or jogged, several attended ballet classes once or twice a week, another played tennis once a week. Most of the male participants were involved in exercise, some in team
sports such as soccer, Australian rules football, and basketball. Most
did it for enjoyment, some also saw the health benefits: For YM more than YW physical activity and exercise were part of their lives. No male participant said they were 'not sporty' or they 'didn't like exercise'. It is important to note that severity was an important factor affecting exercise levels: of the 20 YP at HL 3-4 (serious pulmonary disease), only 3 were active - 1 YW and 2 YM. B. Nutrition Sixty six percent of YW in this study reported a low-calorie diet compared to 21% of YM. When asked what she ate for breakfast one YW replied: "....I don't like eating in the morning 'cause I feel you know....I just can't handle food in the morning. And then at school I don't know, I'm not usually hungry at school. But I make sure I eat something even if it's just a drink or a cake or something like that, but I mainly eat from the time I get home from school until dinner." [F,16,HL4] Asked when she started eating for the day another replied: "When I get hungry (laughs), about lunchtime, sort of round 11." [F,16,HL4] Another YW did not enjoy eating: R: The only thing I don't really do, oh I do it but I get bored of, is
eating. And that's probably my own fault why I've lost the weight, but
I think I need a break for a while. Many of the young men by contrast seemed to maintain a regular diet throughout the day as these extracts indicate: "Oh it's reasonable you know, it's fairly big. But with my diabetes I've got to eat a lot. I've got to have a lot of that and then I'll eat heaps 'cause I know if I don't you know I'm going to suffer but yeah it's a fairly big appetite." [M,19,HL2] Yep, apple for recess, this is now lunch, say 2 rounds of sandwiches, maybe chocolate big M [milk], or a soft drink or cordial glass or what ever. Then sometimes chips or something like that, depends what I feel. ...Afternoon tea, I'm usually home by then, have chocolate milk, chocolate slice, tea usually, vegetables with some sort of meat." [M,18,HL3]. There was a very different attitude to eating by the 2 groups and a difference in eating patterns. The young women neither ate as much nor did they appear to have the same enjoyment in eating as the YM. C. Physiotherapy (Postural drainage or pep mask) "…expressed difficulty with maintaining the physiotherapy routine…" The YM all expressed difficulty with maintaining the physiotherapy routine, but most were likely to do some physiotherapy/chest clearance. No YM referred to periods of total non-adherence where physiotherapy/exercise and medication (including digestive enzymes) were abandoned. Low levels of the use of physiotherapy combined with a disinterest or difficulty with motivation for exercise, and the likelihood of a low calorie intake, could leave YW vulnerable. A number of the young women reported periods of time in the past of denial of their disease and stopping their regimen altogether. This included physiotherapy, and medication (antibiotics/digestive enzymes): "I just didn't want to do it, I didn't see the point really." [F17,HL4] "I was at a stage where I was sick of taking a whole heap of drugs,
sick of taking all these tablets and I thought well forget it I don't
want to do it any more and that's why I did get sick." "In the last few months you know, I just tried to tried to pretend
that I didn't have CF... It meant not looking after myself, not, just
thinking you know I'm not that bad. I'll be OK, you know." CONCLUSION Differing attitudes by young men and young women to: "Both the medical and social aspects impact on each other…" CF is a bio-medical disease that is experienced in the social world. Both the medical and social aspects impact on each other, ultimately affecting quality and quantity of life. It is important for decision makers to understand what it is like to live with CF, and how young people make decisions on life style, so that care can be the best possible. It is also important that YPWCF have as much information as possible so informed decision making on self-care and life style choices can take place. Rosemary Miller ronisich@netspace.net.au
YW young women [F,17,HL3] (example) F Female Health Levels (HL) - health status index of pulmonary disease
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