Family Practice © Oxford University
Vol. 8, No. 1 Printed in Great Britain
JSS 1991
The Social Impact of Asthma ANDREW NOCON AND TIM BOOTH1 Nocon A, Booth T. The social impact of asthma. Family Practice 1990; 8: 37-41. While much research has examined the aetiology and treatment of asthma, little work has been done on its social impact. Yet asthma, like any disease, has a social as well as a medical dimension and it is increasingly being recognized that these two dimensions are interlinked. This paper describes a study into the social and personal impact of asthma on the lives of sufferers and their families. It shows that people are affected in many different ways: in employment, schooling, physical activities, social interaction, personal relationships and emotional well-being. All of the people interviewed had experienced some impact on their lives, albeit to varying degrees. The overall social impact was positively correlated with the severity of the asthma itself; this correlation was statistically significant in the case of adults and children under school age.
Asthma morbidity in the UK continues to increase.' Nevertheless, accurate figures concerning the prevalence of asthma are hard to come by. The number of diagnosed asthmatics in the UK was put at 2 million—or 4% of the population—in 1987, but this may represent a four-fold underestimate of the total number of people experiencing symptoms.3 Data from the National Child Development Study indicate that 25% of children had experienced at least one episode of asthma or wheeze/ It is important to recognize, however, that asthma can affect individuals in different ways: both the frequency and severity of symptoms will vary. Some people may only experience it occasionally, perhaps over short periods of time, while for others it will pose a major and constant problem: mortality rates themselves show no sign of decreasing. The development of improved treatment methods over the past 30 years has meant that symptoms can often be prevented from arising or can be relieved when they do occur, but while many GPs are improving their knowledge of diagnosis and treatment, the standard of care in general practice remains variable and sometimes poor.5 In addition, patients themselves are frequently singled out for criticism, for failing to take adequate prophylactic measures or to treat attacks properly. Some, for instance, are content to put up with wheezing and adapt to it rather than seeking to eliminate it. It remains the case, however, that some people aFe unresponsive to the medication available.6
Improved education and compliance do not invariably prevent the need for further hospital admission.7 It is not surprising, then, that asthma continues to affect sufferers' everyday lives to a greater or lesser extent, although there may, for example, be more reason now to question the need for sufferers to take time off work or school.8'' Sufferers may be confined indoors at particular times of year, their holiday arrangements may be limited, or their participation in sport restricted. In addition, asthma can restrict the social lives of carers and adversely affect the emotional well-being of both sufferers and their families. Not least, it can involve financial costs.10 This introduction provides only a brief summary of the existing literature on the prevalence and social impact of asthma: these issues are explored in more detail elsewhere.11'12 It is the case, though, that, in many of the studies which comment on aspects of the social impact of asthma, the primary focus is on clinical issues such as aetiology and management: references to social aspects are typically phrased in general terms. While this allows broad areas to be outlined, little detail is usually available about the precise ways in which asthma impinges on people's lives or the exact nature of any restrictions that they may experience. METHOD The purpose of the study described here was to investigate the social impact of asthma on sufferers and their families in more detail. This was essentially an exploratory study aimed at providing qualitative case-study material. We recognized that existing and validated quality of life measures and asthma-specific instruments offer an opportunity to measure particular aspects of the social impact of ill-health. However, our
Centre for Primary Care Research, Department of General Practice, University of Manchester, Rusholme Health Centre, Walmer Street, Manchester M14 5NP, UK and 'Joint Unit for Social Services Research, University of Sheffield, Sheffield, UK.
37
38
FAMILY PRACTICE—AN INTERNATIONAL JOURNAL
intention was to conduct a more wide-ranging investigation of the possible ways in which asthma might affect sufferers' lives and to allow respondents to describe their own experiences in depth. We thus decided to focus on a small sample of asthma sufferers and to explore issues in detail, rather than to conduct a large-scale survey. Our sample consisted of asthma sufferers who had been admitted to hospital with a primary diagnosis of asthma one year earlier. This group of patients was chosen on the grounds that it was likely to include a number of people with severe asthma for whom the overall social impact might be more marked. This would enable us to identify the various ways in which asthma might potentially affect sufferers in their everyday lives. The research design would also allow us to focus on medium and long-term effects: it would exclude any transitional difficulties that might only arise after the onset of asthma and before the condition could be stabilized through medical intervention. The sample was not intended to be representative of sufferers as a whole or of patients attending out-patient clinics. However, it would be representative of sufferers who had received in-patient hospital treatment. Sixty patients were selected at random from a total of 484 who had been admitted to hospitals in Sheffield over a 4-month period one year earlier. Patients living outside the Sheffield area were excluded but no further exclusions or weightings were made. The sample reflected the overall age range of the patients admitted during this time. Interviews were eventually carried out with 50 asthma sufferers or, in the case of children, their parents. The interviews centred on the completion of an 89item questionnaire which included a variety of closed and open-ended questions. The questionnaire covered both factual information and respondents' perceptions of the asthma, its management and its effects on their everyday lives. It included sections on: the history of asthma attacks; triggering factors; the frequency and severity of attacks; contact with hospitals and GPs; medication prescribed, compliance, and side-effects; effects on schooling; effects on employment; effects on housework; effects on social and leisure activities; changes in household and living arrangements; practical effects on the lives of parents, spouses or other carers; emotional effects on the sufferer and carers; effects on family relationships; and financial effects. The questionnaire was piloted before being used in its final form. A copy of the questionnaire, together with guidance for its use, is available from the authors. The questionnaire was used to construct a four-point scale to assess the overall social impact of asthma on sufferers' lives. The scale was based on 57 variables (43 in the case of children at school and 38 for children under school age) relating to changes, restrictions or adverse effects in various areas of sufferers' everyday lives: general activities, changes around the home, housework, outside employment, schooling, finances,
practical effects for carers, and emotional impact. Full details of the construction of the scale are given in the final research report.12 The overall social impact of asthma was classified as follows: mild—impact in up to 25% of variables; moderate—impact in 25-50% of variables; severe—impact in 50-75% of variables; and extremely severe—impact in over 75% of variables. RESULTS The sample comprised 32 children and 18 adults, spanning a total age range of 1 to 84 years. All of those interviewed reported that asthma had had some impact on their lives. Although respondents identified a wide variety of ways in which asthma affected them in their everyday lives, only a summary of the main findings is given here. A full account is available elsewhere. Children had missed an average of 6i days from school during the past year because of asthma; only three of the 14 school age children had not missed any time off school during this period. Six of the 18 adults had had to give up a job because of their asthma and were currently out of work: three thought they would never be able to work again. Even those who had jobs had lost an average of 22 days off work in the past year. Eighteen respondents (36%) experienced some form of restriction in their general activities because of their asthma: eight of these, all adults, described these restrictions as 'considerable'. A further 22 respondents said they faced some restriction when their asthma was bad. At least half of the adults experienced some difficulty with walking uphill, carrying heavy shopping, gardening and decorating: the numbers unable to do these activities at all were three, nine, seven and ten respectively. One person was housebound because of her asthma; two others could only walk very short distances and usually depended on a car if they wished to go out. Seven adults mentioned specific sports that they would have liked to take up but were unable to; two others experienced difficulties with some sports that they took part in. Six (43%) of the school-age children similarly experienced a degree of difficulty at most times with sport or physical activity; four of them had to stop early when taking part in some sports or had to do some activities in stages. One child was unable to do any horse-riding. Walking uphill caused some difficulty for six of the school-age children. However, asthma did not prevent any of the children from taking part in sports and PE activities at school. Twenty respondents said that asthma affected their holiday arrangements. Six stated that they would not go abroad; others experienced a variety of restrictions such as being unable to stay in hotels, caravans, or farmhouse accommodation. However, some respondents, including people with severe and chronic asthma, had spent trouble-free holidays in places such as Morocco and the West Indies.
39
THE SOCIAL IMPACT OF ASTHMA
Housework caused some difficulty for 83% of the adults; this was the case for younger people in their 20s and 30s as well as for older respondents. Eight people described their problems in terms of housework as a whole rather than specific tasks: they found all housework exhausting and had to take everything slowly. Two-thirds of the respondents (or their families) had made some changes to their household arrangements because of asthma. Twenty-three had bought nonallergenic bedding, 16 avoided specific foods which might trigger attacks, and 10 had got rid of pets. In eight households, one or more family members had given up smoking. Although people continued to smoke in 20 households, many of them took care not to do so in the presence of the sufferer. Asthma was also a factor in the decision of seven respondents to move house. Two of these said that pollution or pollen in the air had previously aggravated their condition; three others moved because of difficulties with stairs in their previous accommodation or because their house was on a hill. Asthma often had an impact on respondents' finances. Eighteen respondents (or their families) had lost income through taking time off work. Ten said that they found it difficult to meet the extra costs associated with asthma, either for one-off purchases such as nonallergenic bedding or more regular expenses such as prescriptions or additional heating. A total of 14 respondents mentioned that some of the problems caused by their asthma might be alleviated if they had more money: three, for instance, said they would buy a nebuliser if they were able to. Of the 39 parents or partners of sufferers who were in paid employment, 27 had had to take time off work because of the asthma. Five people had given up jobs completely because of it. Asthma meant that over half (27) the parents or partners had occasional bad nights' sleep and 12 of them experienced some restrictions to their social lives. • In over half (26) of the households, parents or partners also said they did more housework as a result of the asthma. In the case of (15) children, this work was additional to parents' usual household work. For the adults, it generally involved a transfer of work from one person to another: for half of them, it brought about a change in the division of labour between men and women. Ninety per cent of respondents stated that asthma had some emotional impact on their lives. Some were angered by it, others expressed guilt, many were worried by the possibility of further serious attacks or by its impact on their future lifestyle and well-being; a few felt that it was a major burden on their lives. For some families the asthma was a cause of tension, in other cases it brought families closer together; it could sometimes have both effects within a single family. On a practical level, it caused a number of respondents, mainly amongst the adults, to feel embarrassed when they needed to use their inhaler in public.
Overall, asthma created considerable strain when it first arose, and also later if it continued to be severe or unpredictable. Most respondents said they were initially very unsure how best to handle it. Some voiced their continuing uncertainty about when to seek medical help; this was often the cause of much anxiety for them. ANALYSIS Table 1 shows the number of respondents in each category on the scale of severity of overall social impact, and demonstrates that the social impact of asthma was more severe for the adults in the sample. Indeed, the mean percentage of items that had an impact on the lives of adult sufferes was 43%, whereas it was 27% for children under school age, and 20% for children at school. Correlation between overall social impact and physical severity The severity of the physical symptoms of asthma was also graded. Given the different nature and progression of asthma in children and adults, however, two separate scales are used to indicate severity for the two groups. The scales shown in Table 2 are based on descriptions provided by the respondents themselves and are not intended to represent comprehensive scales of severity. The Spearman Rank Correlation Coefficient was used to show the correlation between Overall Social Impact and Physical Severity. The calculations took account of tied values in ranking13 and the results are shown in Table 3. The table shows that the overall social impact of asthma was significantly correlated with physical severity in the case of both adults and children under school age, though not for children at school. The reason for the lack of significant correlation in the latter case is unclear. It may be linked to the overall low levels of physical severity in this group and the conTABLE 1 Overall social impact of asthma
Number of respondents within each category of severity 1 2 3 4 Extremely Mild Moderate Severe Severe Children under school age Children of school age Adults (17 or over) Total 1
(50%)"
(44%)
(6%)
10 (71%) 3 (17%) 22 (44%)
4 (29%) 7 (39%) 19 (38%)
7 (39%) 8 (16%)
Percentages refer to numbers in each age band.
1 (6%) 1 (2%)
40
FAMILY PRACTICE—AN INTERNATIONAL JOURNAL TABLE 2
Physical severity of the asthma
Category Children: 1 Improved control of mild symptoms 2 Improved control of moderately severe symptoms 3 Improved control of severe symptoms 4 Severe symptoms still occur, though infrequently 5 Severe symptoms still occur fairly frequently 6 Severe symptoms, and getting worse Total Adults 1 Effective control of symptoms 2 Moderately severe symptoms still occur episodically 3 Severe symptoms still occur episodically 4 Severe chronic asthma, but no further admissions to hospital in past twelve months 5 Severe chronic asthma, no further admissions to hospital in past twelve months, but getting worse 6 Severe chronic asthma, with further admissions to hospital in past twelve months 7 Severe chronic asthma, with further admissions to hospital in past twelve months, and getting worse Total
Number of respondents in each category 13 9 2
5 2 1 32 2 1 1 4 1 4 5 18
sequent lack of major differentiation in ranking. On the other hand, the low levels of physical severity may themselves suggest that social impact is proportionately higher than for the other two groups, perhaps being related to the increasingly varied and active lifestyle of children in this group. On this basis, the severe social impact amongst the adults could similarly be viewed as a reflection of the multifaceted nature of their own lifestyles. The high levels of impact in the case of children under school age, for their part, would be associated with the lifestyles and caring role of their parents in addition to direct impact on the children themselves. CONCLUSIONS This study belies the assertion that the effects of asthma can be fully controlled by the use of appropriate medication. Only two of the 48 respondents who had medication for their asthma no longer experienced any symptoms at all: 27 had occasional symptoms, while 19 still suffered from quite bad asthma. A number of respondents felt that asthma had a profound adverse effect on their lifestyles. Many accepted
the restrictions that it imposed but nonetheless voiced their resolve to live as normal a life as they could. The study has highlighted several ways of reducing the restrictions and adverse effects of asthma. In the first place, many respondents asked for more information. They wanted to know more about possible causes, the management of attacks, how to decide when to summon medical help, the nature of the drugs and their side-effects, and the likely prognosis. Secondly, they wanted to know more about practical implications. Holidays were one area about which several respondents expressed some uncertainty, with many deciding to err on the side of caution. Housework presented problems for many adult sufferers, though one person managed to overcome at least some of the difficulties by wearing a mask. Some respondents were' unsure about the usefulness, in their own particular circumstances, of, say, removing all bedroom carpets and soft toys: they felt that the disadvantages could sometimes outweigh any benefits. Respondents obtained information and advice from various sources; but several adopted a trial and error approach to the problems they encountered and would have appreciated more information related to their own particular circumstances. Respondents also asked for more counselling services, by professionals as well as in self-help groups. They wanted the opportunity to air their anxieties, confusion, and grievances, to come to terms with their predicament and to develop their inner resources to overcome the problems they faced. A number of people called for more practical help. Some wanted a nebuliser of their own, or least access to a nebuliser at a GP surgery. Others mentioned other forms of practical assistance such as with housework. Information would equally be required about where to obtain help. Some respondents had received help from the local Asthma Society or Social Services Department: the latter provided, for example, telephones, showers and bath aids; however a number of people did not know about the services available. Finally, there is a need for increased awareness about the nature and effects of asthma. This would apply to employers, schools, and the public at large. Many people felt that, because asthma is a 'hidden' disease, they were often greeted with disbelief and a lack of understanding when they spoke to others about their difficulties. While many medical and nursing staff were praised TABLE 3 Correlation between the overall social impact and the physical severity of asthma, using Spearman rank correlation coefficients
Children under school age Children of school age Adults 'Significant at />=0.05.
18 14 18
0.552 0.059 0.434
THE SOCIAL IMPACT OF ASTHMA for their helpfulness, others were criticized for their lack of understanding of or concern for the problems that people faced. More dialogue with patients about the practical difficulties caused by the asthma and its emotional impact would serve to improve the overall quality of care provided. It could also lead to more detailed and more appropriate recommendations for the management of both the asthma and its effects. ACKNOWLEDGEMENT We are grateful to the Sheffield Asthma Society for their financial support for this study. REFERENCES Fleming D M, Crombie D L. Prevalence of asthma and hay fever in England and Wales. Br Med J 1987; 294: 2751-283. 2 Lane D J, Storr A. Asthma: The Facts. Second edition. Oxford: Oxford University Press, 1987. 3 Mortagy A K, Howell J B L, Waters W E. Respiratory symptoms and bronchial reactivity: identification of a syndrome and its relation to asthma. Br Med J 1986; 293: 525-529. * Anderson H R, Bland J M, Patel S, Peckham C. The natu1
41
ral history of asthma in childhood. J Epidemiol Commun Health 1986; 40: 121-129. 'Gregg I. The quality of care of asthma in general practice—a challenge for the future. Fam Practice 1985; 2: 94-100. 6 Turner-Warwick M. Nocturnal asthma: a study in general practice. / R Coll Gen Pract 1989; 39: 239-243. 7 Yellowlees P M, Haynes S, Potts N, Ruffin R E. Psychiatric morbidity in patients with life-threatening asthma: initial report of a controlled study. Med J Australia 1988; 149: 246-249. ' Ayres J G. Trends in asthma and hay fever in general practice in the United Kingdom 1976-83. Thorax 1986; 41: 111-116. 'Speight A N P, Lee D A, Hey E N. Underdiagnosis and undertreatment of asthma in childhood. Br Med J 1983; 286: 1253-1256. 10 Marion R J, CreerT L, Reynolds R V C. Direct and indirect costs associated with the management of childhood asthma. Ann Allergy 1985; 54: 31-34. 1 ' Nocon A, Booth T. The social impact of asthma: a re view of the literature. Social Work Social Sci Rev 1990; (in press). Nocon, A, Booth T. The social impact of asthma. Report to the Sheffield Asthma Society. University of Sheffield: Joint Unit for Social Services Research, 1989. 13 Siegel S. Nonparametric Statistics. Tokyo: McGraw Hill, 1956.
Vol. 8, No. 1 Printed in Great Britain
JSS 1991
The Social Impact of Asthma ANDREW NOCON AND TIM BOOTH1 Nocon A, Booth T. The social impact of asthma. Family Practice 1990; 8: 37-41. While much research has examined the aetiology and treatment of asthma, little work has been done on its social impact. Yet asthma, like any disease, has a social as well as a medical dimension and it is increasingly being recognized that these two dimensions are interlinked. This paper describes a study into the social and personal impact of asthma on the lives of sufferers and their families. It shows that people are affected in many different ways: in employment, schooling, physical activities, social interaction, personal relationships and emotional well-being. All of the people interviewed had experienced some impact on their lives, albeit to varying degrees. The overall social impact was positively correlated with the severity of the asthma itself; this correlation was statistically significant in the case of adults and children under school age.
Asthma morbidity in the UK continues to increase.' Nevertheless, accurate figures concerning the prevalence of asthma are hard to come by. The number of diagnosed asthmatics in the UK was put at 2 million—or 4% of the population—in 1987, but this may represent a four-fold underestimate of the total number of people experiencing symptoms.3 Data from the National Child Development Study indicate that 25% of children had experienced at least one episode of asthma or wheeze/ It is important to recognize, however, that asthma can affect individuals in different ways: both the frequency and severity of symptoms will vary. Some people may only experience it occasionally, perhaps over short periods of time, while for others it will pose a major and constant problem: mortality rates themselves show no sign of decreasing. The development of improved treatment methods over the past 30 years has meant that symptoms can often be prevented from arising or can be relieved when they do occur, but while many GPs are improving their knowledge of diagnosis and treatment, the standard of care in general practice remains variable and sometimes poor.5 In addition, patients themselves are frequently singled out for criticism, for failing to take adequate prophylactic measures or to treat attacks properly. Some, for instance, are content to put up with wheezing and adapt to it rather than seeking to eliminate it. It remains the case, however, that some people aFe unresponsive to the medication available.6
Improved education and compliance do not invariably prevent the need for further hospital admission.7 It is not surprising, then, that asthma continues to affect sufferers' everyday lives to a greater or lesser extent, although there may, for example, be more reason now to question the need for sufferers to take time off work or school.8'' Sufferers may be confined indoors at particular times of year, their holiday arrangements may be limited, or their participation in sport restricted. In addition, asthma can restrict the social lives of carers and adversely affect the emotional well-being of both sufferers and their families. Not least, it can involve financial costs.10 This introduction provides only a brief summary of the existing literature on the prevalence and social impact of asthma: these issues are explored in more detail elsewhere.11'12 It is the case, though, that, in many of the studies which comment on aspects of the social impact of asthma, the primary focus is on clinical issues such as aetiology and management: references to social aspects are typically phrased in general terms. While this allows broad areas to be outlined, little detail is usually available about the precise ways in which asthma impinges on people's lives or the exact nature of any restrictions that they may experience. METHOD The purpose of the study described here was to investigate the social impact of asthma on sufferers and their families in more detail. This was essentially an exploratory study aimed at providing qualitative case-study material. We recognized that existing and validated quality of life measures and asthma-specific instruments offer an opportunity to measure particular aspects of the social impact of ill-health. However, our
Centre for Primary Care Research, Department of General Practice, University of Manchester, Rusholme Health Centre, Walmer Street, Manchester M14 5NP, UK and 'Joint Unit for Social Services Research, University of Sheffield, Sheffield, UK.
37
38
FAMILY PRACTICE—AN INTERNATIONAL JOURNAL
intention was to conduct a more wide-ranging investigation of the possible ways in which asthma might affect sufferers' lives and to allow respondents to describe their own experiences in depth. We thus decided to focus on a small sample of asthma sufferers and to explore issues in detail, rather than to conduct a large-scale survey. Our sample consisted of asthma sufferers who had been admitted to hospital with a primary diagnosis of asthma one year earlier. This group of patients was chosen on the grounds that it was likely to include a number of people with severe asthma for whom the overall social impact might be more marked. This would enable us to identify the various ways in which asthma might potentially affect sufferers in their everyday lives. The research design would also allow us to focus on medium and long-term effects: it would exclude any transitional difficulties that might only arise after the onset of asthma and before the condition could be stabilized through medical intervention. The sample was not intended to be representative of sufferers as a whole or of patients attending out-patient clinics. However, it would be representative of sufferers who had received in-patient hospital treatment. Sixty patients were selected at random from a total of 484 who had been admitted to hospitals in Sheffield over a 4-month period one year earlier. Patients living outside the Sheffield area were excluded but no further exclusions or weightings were made. The sample reflected the overall age range of the patients admitted during this time. Interviews were eventually carried out with 50 asthma sufferers or, in the case of children, their parents. The interviews centred on the completion of an 89item questionnaire which included a variety of closed and open-ended questions. The questionnaire covered both factual information and respondents' perceptions of the asthma, its management and its effects on their everyday lives. It included sections on: the history of asthma attacks; triggering factors; the frequency and severity of attacks; contact with hospitals and GPs; medication prescribed, compliance, and side-effects; effects on schooling; effects on employment; effects on housework; effects on social and leisure activities; changes in household and living arrangements; practical effects on the lives of parents, spouses or other carers; emotional effects on the sufferer and carers; effects on family relationships; and financial effects. The questionnaire was piloted before being used in its final form. A copy of the questionnaire, together with guidance for its use, is available from the authors. The questionnaire was used to construct a four-point scale to assess the overall social impact of asthma on sufferers' lives. The scale was based on 57 variables (43 in the case of children at school and 38 for children under school age) relating to changes, restrictions or adverse effects in various areas of sufferers' everyday lives: general activities, changes around the home, housework, outside employment, schooling, finances,
practical effects for carers, and emotional impact. Full details of the construction of the scale are given in the final research report.12 The overall social impact of asthma was classified as follows: mild—impact in up to 25% of variables; moderate—impact in 25-50% of variables; severe—impact in 50-75% of variables; and extremely severe—impact in over 75% of variables. RESULTS The sample comprised 32 children and 18 adults, spanning a total age range of 1 to 84 years. All of those interviewed reported that asthma had had some impact on their lives. Although respondents identified a wide variety of ways in which asthma affected them in their everyday lives, only a summary of the main findings is given here. A full account is available elsewhere. Children had missed an average of 6i days from school during the past year because of asthma; only three of the 14 school age children had not missed any time off school during this period. Six of the 18 adults had had to give up a job because of their asthma and were currently out of work: three thought they would never be able to work again. Even those who had jobs had lost an average of 22 days off work in the past year. Eighteen respondents (36%) experienced some form of restriction in their general activities because of their asthma: eight of these, all adults, described these restrictions as 'considerable'. A further 22 respondents said they faced some restriction when their asthma was bad. At least half of the adults experienced some difficulty with walking uphill, carrying heavy shopping, gardening and decorating: the numbers unable to do these activities at all were three, nine, seven and ten respectively. One person was housebound because of her asthma; two others could only walk very short distances and usually depended on a car if they wished to go out. Seven adults mentioned specific sports that they would have liked to take up but were unable to; two others experienced difficulties with some sports that they took part in. Six (43%) of the school-age children similarly experienced a degree of difficulty at most times with sport or physical activity; four of them had to stop early when taking part in some sports or had to do some activities in stages. One child was unable to do any horse-riding. Walking uphill caused some difficulty for six of the school-age children. However, asthma did not prevent any of the children from taking part in sports and PE activities at school. Twenty respondents said that asthma affected their holiday arrangements. Six stated that they would not go abroad; others experienced a variety of restrictions such as being unable to stay in hotels, caravans, or farmhouse accommodation. However, some respondents, including people with severe and chronic asthma, had spent trouble-free holidays in places such as Morocco and the West Indies.
39
THE SOCIAL IMPACT OF ASTHMA
Housework caused some difficulty for 83% of the adults; this was the case for younger people in their 20s and 30s as well as for older respondents. Eight people described their problems in terms of housework as a whole rather than specific tasks: they found all housework exhausting and had to take everything slowly. Two-thirds of the respondents (or their families) had made some changes to their household arrangements because of asthma. Twenty-three had bought nonallergenic bedding, 16 avoided specific foods which might trigger attacks, and 10 had got rid of pets. In eight households, one or more family members had given up smoking. Although people continued to smoke in 20 households, many of them took care not to do so in the presence of the sufferer. Asthma was also a factor in the decision of seven respondents to move house. Two of these said that pollution or pollen in the air had previously aggravated their condition; three others moved because of difficulties with stairs in their previous accommodation or because their house was on a hill. Asthma often had an impact on respondents' finances. Eighteen respondents (or their families) had lost income through taking time off work. Ten said that they found it difficult to meet the extra costs associated with asthma, either for one-off purchases such as nonallergenic bedding or more regular expenses such as prescriptions or additional heating. A total of 14 respondents mentioned that some of the problems caused by their asthma might be alleviated if they had more money: three, for instance, said they would buy a nebuliser if they were able to. Of the 39 parents or partners of sufferers who were in paid employment, 27 had had to take time off work because of the asthma. Five people had given up jobs completely because of it. Asthma meant that over half (27) the parents or partners had occasional bad nights' sleep and 12 of them experienced some restrictions to their social lives. • In over half (26) of the households, parents or partners also said they did more housework as a result of the asthma. In the case of (15) children, this work was additional to parents' usual household work. For the adults, it generally involved a transfer of work from one person to another: for half of them, it brought about a change in the division of labour between men and women. Ninety per cent of respondents stated that asthma had some emotional impact on their lives. Some were angered by it, others expressed guilt, many were worried by the possibility of further serious attacks or by its impact on their future lifestyle and well-being; a few felt that it was a major burden on their lives. For some families the asthma was a cause of tension, in other cases it brought families closer together; it could sometimes have both effects within a single family. On a practical level, it caused a number of respondents, mainly amongst the adults, to feel embarrassed when they needed to use their inhaler in public.
Overall, asthma created considerable strain when it first arose, and also later if it continued to be severe or unpredictable. Most respondents said they were initially very unsure how best to handle it. Some voiced their continuing uncertainty about when to seek medical help; this was often the cause of much anxiety for them. ANALYSIS Table 1 shows the number of respondents in each category on the scale of severity of overall social impact, and demonstrates that the social impact of asthma was more severe for the adults in the sample. Indeed, the mean percentage of items that had an impact on the lives of adult sufferes was 43%, whereas it was 27% for children under school age, and 20% for children at school. Correlation between overall social impact and physical severity The severity of the physical symptoms of asthma was also graded. Given the different nature and progression of asthma in children and adults, however, two separate scales are used to indicate severity for the two groups. The scales shown in Table 2 are based on descriptions provided by the respondents themselves and are not intended to represent comprehensive scales of severity. The Spearman Rank Correlation Coefficient was used to show the correlation between Overall Social Impact and Physical Severity. The calculations took account of tied values in ranking13 and the results are shown in Table 3. The table shows that the overall social impact of asthma was significantly correlated with physical severity in the case of both adults and children under school age, though not for children at school. The reason for the lack of significant correlation in the latter case is unclear. It may be linked to the overall low levels of physical severity in this group and the conTABLE 1 Overall social impact of asthma
Number of respondents within each category of severity 1 2 3 4 Extremely Mild Moderate Severe Severe Children under school age Children of school age Adults (17 or over) Total 1
(50%)"
(44%)
(6%)
10 (71%) 3 (17%) 22 (44%)
4 (29%) 7 (39%) 19 (38%)
7 (39%) 8 (16%)
Percentages refer to numbers in each age band.
1 (6%) 1 (2%)
40
FAMILY PRACTICE—AN INTERNATIONAL JOURNAL TABLE 2
Physical severity of the asthma
Category Children: 1 Improved control of mild symptoms 2 Improved control of moderately severe symptoms 3 Improved control of severe symptoms 4 Severe symptoms still occur, though infrequently 5 Severe symptoms still occur fairly frequently 6 Severe symptoms, and getting worse Total Adults 1 Effective control of symptoms 2 Moderately severe symptoms still occur episodically 3 Severe symptoms still occur episodically 4 Severe chronic asthma, but no further admissions to hospital in past twelve months 5 Severe chronic asthma, no further admissions to hospital in past twelve months, but getting worse 6 Severe chronic asthma, with further admissions to hospital in past twelve months 7 Severe chronic asthma, with further admissions to hospital in past twelve months, and getting worse Total
Number of respondents in each category 13 9 2
5 2 1 32 2 1 1 4 1 4 5 18
sequent lack of major differentiation in ranking. On the other hand, the low levels of physical severity may themselves suggest that social impact is proportionately higher than for the other two groups, perhaps being related to the increasingly varied and active lifestyle of children in this group. On this basis, the severe social impact amongst the adults could similarly be viewed as a reflection of the multifaceted nature of their own lifestyles. The high levels of impact in the case of children under school age, for their part, would be associated with the lifestyles and caring role of their parents in addition to direct impact on the children themselves. CONCLUSIONS This study belies the assertion that the effects of asthma can be fully controlled by the use of appropriate medication. Only two of the 48 respondents who had medication for their asthma no longer experienced any symptoms at all: 27 had occasional symptoms, while 19 still suffered from quite bad asthma. A number of respondents felt that asthma had a profound adverse effect on their lifestyles. Many accepted
the restrictions that it imposed but nonetheless voiced their resolve to live as normal a life as they could. The study has highlighted several ways of reducing the restrictions and adverse effects of asthma. In the first place, many respondents asked for more information. They wanted to know more about possible causes, the management of attacks, how to decide when to summon medical help, the nature of the drugs and their side-effects, and the likely prognosis. Secondly, they wanted to know more about practical implications. Holidays were one area about which several respondents expressed some uncertainty, with many deciding to err on the side of caution. Housework presented problems for many adult sufferers, though one person managed to overcome at least some of the difficulties by wearing a mask. Some respondents were' unsure about the usefulness, in their own particular circumstances, of, say, removing all bedroom carpets and soft toys: they felt that the disadvantages could sometimes outweigh any benefits. Respondents obtained information and advice from various sources; but several adopted a trial and error approach to the problems they encountered and would have appreciated more information related to their own particular circumstances. Respondents also asked for more counselling services, by professionals as well as in self-help groups. They wanted the opportunity to air their anxieties, confusion, and grievances, to come to terms with their predicament and to develop their inner resources to overcome the problems they faced. A number of people called for more practical help. Some wanted a nebuliser of their own, or least access to a nebuliser at a GP surgery. Others mentioned other forms of practical assistance such as with housework. Information would equally be required about where to obtain help. Some respondents had received help from the local Asthma Society or Social Services Department: the latter provided, for example, telephones, showers and bath aids; however a number of people did not know about the services available. Finally, there is a need for increased awareness about the nature and effects of asthma. This would apply to employers, schools, and the public at large. Many people felt that, because asthma is a 'hidden' disease, they were often greeted with disbelief and a lack of understanding when they spoke to others about their difficulties. While many medical and nursing staff were praised TABLE 3 Correlation between the overall social impact and the physical severity of asthma, using Spearman rank correlation coefficients
Children under school age Children of school age Adults 'Significant at />=0.05.
18 14 18
0.552 0.059 0.434
THE SOCIAL IMPACT OF ASTHMA for their helpfulness, others were criticized for their lack of understanding of or concern for the problems that people faced. More dialogue with patients about the practical difficulties caused by the asthma and its emotional impact would serve to improve the overall quality of care provided. It could also lead to more detailed and more appropriate recommendations for the management of both the asthma and its effects. ACKNOWLEDGEMENT We are grateful to the Sheffield Asthma Society for their financial support for this study. REFERENCES Fleming D M, Crombie D L. Prevalence of asthma and hay fever in England and Wales. Br Med J 1987; 294: 2751-283. 2 Lane D J, Storr A. Asthma: The Facts. Second edition. Oxford: Oxford University Press, 1987. 3 Mortagy A K, Howell J B L, Waters W E. Respiratory symptoms and bronchial reactivity: identification of a syndrome and its relation to asthma. Br Med J 1986; 293: 525-529. * Anderson H R, Bland J M, Patel S, Peckham C. The natu1
41
ral history of asthma in childhood. J Epidemiol Commun Health 1986; 40: 121-129. 'Gregg I. The quality of care of asthma in general practice—a challenge for the future. Fam Practice 1985; 2: 94-100. 6 Turner-Warwick M. Nocturnal asthma: a study in general practice. / R Coll Gen Pract 1989; 39: 239-243. 7 Yellowlees P M, Haynes S, Potts N, Ruffin R E. Psychiatric morbidity in patients with life-threatening asthma: initial report of a controlled study. Med J Australia 1988; 149: 246-249. ' Ayres J G. Trends in asthma and hay fever in general practice in the United Kingdom 1976-83. Thorax 1986; 41: 111-116. 'Speight A N P, Lee D A, Hey E N. Underdiagnosis and undertreatment of asthma in childhood. Br Med J 1983; 286: 1253-1256. 10 Marion R J, CreerT L, Reynolds R V C. Direct and indirect costs associated with the management of childhood asthma. Ann Allergy 1985; 54: 31-34. 1 ' Nocon A, Booth T. The social impact of asthma: a re view of the literature. Social Work Social Sci Rev 1990; (in press). Nocon, A, Booth T. The social impact of asthma. Report to the Sheffield Asthma Society. University of Sheffield: Joint Unit for Social Services Research, 1989. 13 Siegel S. Nonparametric Statistics. Tokyo: McGraw Hill, 1956.
