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Understanding childhood asthma in focus groups: perspectives from mothers of different ethnic backgrounds

Understanding childhood asthma in focus groups: perspectives from mothers of different ethnic... Background: Diagnosing childhood asthma is dependent upon parental symptom reporting but there are problems in the use of words and terms. The purpose of this study was to describe and compare understandings of childhood 'asthma' by mothers from three different ethnic backgrounds who have no personal experience of diagnosing asthma. A better understanding of parents' perceptions of an illness by clinicians should improve communication and management of the illness. Method: Sixty-six mothers living in east London describing their ethnic backgrounds as Bangladeshi, white English and black Caribbean were recruited to 9 focus groups. Discussion was semi-structured. Three sessions were conducted with each ethnic group. Mothers were shown a video clip of a boy with audible wheeze and cough and then addressed 6 questions. Sessions were recorded and transcribed verbatim. Responses were compared within and between ethnic groups. Results: Each session, and ethnic group overall, developed a particular orientation to the discussion. Some mothers described the problem using single signs, while others imitated the sound or made comparisons to other illnesses. Hereditary factors were recognised by some, although all groups were concerned with environmental triggers. Responses about what to do included 'normal illness' strategies, use of health services and calls for complementary treatment. All groups were concerned about using medication every day. Expectations about the quality of life were varied, with recognition that restrictions may be based on parental beliefs about asthma, rather than asthma itself. Conclusion: Information from these focus groups suggests mothers know a great deal about childhood asthma even though they have no personal experience of it. Knowledge of how mothers from these ethnic backgrounds perceive asthma may facilitate doctor – patient communication with parents of children experiencing breathing difficulties. pose of this study was to identify how mothers from dif- Background Diagnosing childhood asthma is dependent upon paren- ferent ethnic backgrounds understood a boy's 'asthma' tal symptom reporting. We have previously reported shown on video. The mothers were not told the name of problems in the use of words and terms [1,2]. The pur- the condition and did not have direct experience with di- BMC Family Practice 2001, 2:4 http://www.biomedcentral.com/1471-2296/2/4 Table 1: Structure for each session agnosed asthma. In this way an exploration of public un- derstanding about the condition could be achieved. A Questions asked in each session Abbreviation better understanding of public perceptions of an illness should improve communication and management of the illness with those seeking health care [3]. By studying * What do you think about what you have just seen? Initial prompt understanding with respect to ethnicity, the greater risk What do you call the difficulties this child has? Description of underdiagnosis of asthma in children from minority What do you think causes it? Explanation Have you met children who had similar difficulties? Experience ethnic groups may be reduced [4]. The use of focus What would you do if your child had difficulties like Action groups is an accepted method of understanding and ex- this? ploring people's knowledge [5–9]. In this study the focus Do you think this affects the child's life in any way? Expectation groups' discussions were semistructured. The six pre- planned questions were devised to elicit lay 'explanatory models' [10] in this case for understanding the condition Prompt questions only (not analysed separately) shown on the video. Method munity settings and were recorded by video and / or Sixty-six mothers aged 22 – 45 years and resident in east dictaphone. Ethics approval for the study was granted London, were recruited by advertising and by direct ap- from the local Health Authority. Participants completed proach to a 'discussion group on child health'. Using a re- consent forms and were paid. cruitment questionnaire that asked about a number of family illnesses including asthma, it was possible to enrol Each focus group session was transcribed verbatim. A mothers who had no family members with this disease preliminary analysis reviewed the features of each page without simultaneously introducing the particular sub- of text (e.g. consensus, disagreement). Two readers then ject. In addition to issues about cultural perceptions, reviewed the text for responses to each of the pre- there are translation issues for symptoms central to asth- planned questions. Comparison between the texts from ma such as 'wheeze' [11]. Groups of mothers were there- each session aided analysis. Responses to each of the fore arranged on the basis of similar language and ethnic pre-planned questions were elicited from within each backgrounds. These were 'Bangladeshi', 'White – Eng- session, then compared to the other sessions of the same lish' and 'Black – Caribbean'; the largest population ethnic group, before an overall ethnic group response groups for the area projected from the 1991 census (un- was derived. Results were then checked backed to the published from the London Research Centre). preliminary analysis to ensure proper representation in the extent of agreement. Three experienced moderators of the same ethnic back- grounds as the participants, conducted 3 semistructured Results focus group sessions each. Each session had 5–9 partici- 1 Question 1: Description pants, lasted between 40 minutes – 1 / hours and took Some Bangladeshi mothers quickly and confidently place over three months (November 1999 – February identified the boy's difficulties as 'asthma'. The other 2000). Two of the Bangladeshi sessions were conducted participants generally agreed with little discussion. in, and translated from, Sylheti dialect. In order not to Mothers in one Sylheti session discussed the equivalent make volunteers feel privacy was being threatened we Sylheti terminology. A feature of that discussion was ref- elected not to ask about country of origin, education and erence to breathing difficulties as 'called asthma general- other questions of status. ly'. There was some evidence in each of these sessions that some mothers may use the term 'asthma' broadly, At the start of each session a one minute long video clip for example; 'sometimes parents take their children to was shown. This was of a six year old boy with audible the clinicians and say that it is asthma when it's just a wheeze and cough (used in a previous study [2]). He was cough' and mothers who knew children who had asthma shown undressed to the waist so that chest movements when 'they were born'. could be seen clearly. He held a small microphone so that his breathing (although amplified) could be clearly English mothers described the boy's difficulties using heard. Thus visual and audible signals would be available general terms like 'difficulty in breathing', visual descrip- to the observers, mimicking as far as possible what tions, imitation and individual signs ('wheeze', 'rattle', would be observed by a parent of a child having an asth- 'cough'). 'Asthma' was a more immediate response in one matic episode. Participants were not told that the diag- session. Other respiratory illnesses were discussed and nosis was 'asthma'. Sessions were semi-structured (see discounted on various grounds; age ('too old for croup', table 1). The focus groups took place in convenient com- BMC Family Practice 2001, 2:4 http://www.biomedcentral.com/1471-2296/2/4 too young for smoking related problems), duration (un- ducing breathing difficulties) but hereditary factors were like 'panic attacks') and intensity ('whooping cough is only considered in one group. more violent'). 'Asthma' was generally recognised and accepted but with varying degrees of conviction. That the Many Caribbean mothers related their own observations boy had breathing difficulty was agreed in one session and experiences about poor health generally, emphasis- but the main discussion was about child health. In con- ing nutrition, concerns about 'junk food' and the impor- trast, mothers in another session discussed the concept tance of a 'good' diet for a strong immune system, and of asthma (see Additional file 1: [extract 1]). There were factors in the home and urban environment to respirato- some references to 'asthma' as a particular diagnostic ry problems. Climate comparisons between London and practice (given after a certain age), that can change over the West Indies were considered in part responsible. For time ('they used to say bronchitis, didn't they, but now example, one mother's niece whom 'you'll never even the modern word is asthma'), that diagnosis can be prob- know she is an asthmatic child' when she goes to Jamai- lematic and applied to a range of symptoms. ca. The West Indies was perceived as less 'boxed in', with 'the sea, fresh air, good food' and less stress as central to There was less discussion by the Caribbean mothers good health. about this question. They described what they saw both in terms of symptoms ('breathing difficulties', 'wheeze', In relation to the onset and exacerbation of breathing 'cough', 'rattle') and illness ('asthma', 'bronchitis', 'pneu- difficulties, exercise and psychological references were monia', 'whooping cough'). Although they discussed the occasionally made (particularly 'stress'). symptoms and possible illness, they were less confident than the other two groups in attaching a precise label. Question 3: Action Discussions were often related to their own children's All groups said that precipitants of breathing difficulties coughs and colds. However they clearly understood this should be avoided (described above). boy had more than a cough or cold. Some Bangladeshi mothers mentioned avoiding certain Question 2: Explanation foods; e.g. banana since it 'contains a liquid that irritates Common to all nine sessions, although to differing ex- the throat', and cold milk or ice cream. Going to a doctor tents, were 'pollution' (particularly traffic) and 'the envi- was considered the first move, although a few mentioned ronment' (weather, urban and home surroundings, and that 'doctors here don't even mention restricting foods'. parental smoking). Mothers used phrases such as Mothers said they knew 'automatically whether a cough 'brought on by', 'contributing factor' and 'related to' more is serious or not' as indicated by severity and duration than 'caused by' to discuss their explanations. (2–3 days). Mothers in one session said that if their doc- tor thought it serious or if they were unable to be seen, In addition to these themes, most Bangladeshi mothers they would go to an accident and emergency (A&E) de- mentioned 'hereditary' influences. Several mothers also partment. Paracetamol and menthol preparations were recognised 'the cold' or 'catching colds' as important. mentioned. This was explicitly related to asthmatic children that some knew saying that once they caught a cold, 'that's it'. Some English mothers decided what to do according to Damp and dust in the home were also mentioned. Moth- the context e.g. a first occurrence or acute illness. Dura- ers in two sessions discussed that other (non-specified) tion, severity, and 'assessing' (from practice and learning Bangladeshi people think it is 'contagious' (see from others) informed some responses. Some said they 1Additional file 2: [extract 2]). would go 'straight to the GP' (general practitioner), while others suggested menthol rubs, 'alternative stuff' (e.g. In the English sessions, the association between pollu- breathing techniques), getting advice from other moth- tion (including industrial emissions) and breathing diffi- ers or by 'reading up on it'. Some mentioned 'hoovering a culties was made explicit by some e.g. 'in the media bed down' and special bedcovers. There was concern everyone is telling you, there is more cars on the road ... about long term medications. In two sessions there was exhaust fumes are not good for you so you try and piece debate about health care systems in other countries it together'. 'Pollution' was also related to contamination ('where all GP routinely treat children under seven with of soil and the production of food; e.g. preservatives and homeopathy first'), a lack of complementary therapies food intolerance. In one session this was related to and 'unbiased information' (i.e. not drug company fund- broader issues of social organisation, economic systems, ed) available on the NHS. and health care practice (breast feeding, vaccinations and immunity). In each session the relationship of aller- Some Caribbean mothers said they would utilise their gies was discussed (either as a related condition or as in- normal strategy of what they do when their child is un- BMC Family Practice 2001, 2:4 http://www.biomedcentral.com/1471-2296/2/4 well with respiratory difficulties (e.g. menthol rubs, been formally diagnosed with asthma and mothers were types of foods). In two sessions discussion involved rem- not told this in order to explore their own understand- edies e.g. honey and lemon tea or West Indian remedies ings of the presentation. There were many ways of talk- such as 'bush tea'. These 'remedies' are either consumed ing about the boy's difficulties; from describing single (and included foods considered nourishing) or rubbed signs (general terms, specific sounds, visual descriptions on the body (e.g. soft candle wax). Mothers learnt about and imitation) to naming specific diseases, how they dif- remedies from family members. Some would not men- fer and when they may be considered the same. This tion these to their GP. Only one mother said she would breadth helps explain the previously identified differenc- find out what was wrong before trying a remedy. Most es between health care workers' and parents' reports of would first seek advice from their own family, friends symptoms [1,2,12]. These mothers describe the condi- and medical books (see 1Additional file 3: [extract 3]). As tion observed far more broadly than health care workers, with the other groups, decisions about the need to seek who tend to limit questions to cough, wheeze and short- medical advice were context dependent (e.g. severity of ness of breath. These findings are similar to those of a symptoms, the age of child). Some mentioned that at- study about what health means, where patients consid- tending A&E would be preferable to their GP (mention- ered 'health' more broadly than do general practitioners ing their GP was unhelpful, that surgery hours are [13]. limited and if symptoms were severe enough), however others were just as critical of junior doctors in hospitals. A central explanation for the boy's condition was pollu- tion, particularly from traffic. It is impossible to know Question 4: Expectations whether this is instinctive or informed (occasionally the Bangladeshi mothers in the Sylheti sessions were the media was specified). Although some studies have shown most divided about the possible outcomes of the boy's that children living near busy roads may have more res- condition (see 1Additional file 4: [extract 4]). Some re- piratory symptoms, the overall understanding about pol- sponses were specific to the perceived condition (e.g. lution causing or exacerbating asthma is unclear [14]. sometimes being unable to do sports) while others were However the concern about 'junk food' (particularly in generalised (e.g. 'weariness'). Medication was recognised the Caribbean groups) has since been confirmed by a to 'control' and help normalise the child's condition, but study showing a direct link to childhood asthma [15]. there was also worry about long term use. Despite the Similarly the role of the common cold with asthma dis- discussion about stigma of respiratory illness in Bangla- cussed in the Bangladeshi groups is well established [16]. desh, a mother gave the provision that maybe 'children Complementary approaches suggested by some English growing up here don't worry about these things'. mothers had been used by 59% of asthma patients in one study [17]. Finally, many of the expectations these moth- Most of the English mothers discussed exercise limita- ers had about the effect of the condition (restriction in tion. The general perception was that this condition is activity, changes to be made in the home, effect on school manageable, normality was possible provided things and parental worry) are similar to the experiences of were 'in moderation'. Psychological dependency on asthmatic children and their families' [18,19]. The evi- 'drugs' and missing school (from illness and attending dence from these studies supports the mothers' under- appointments) were frequently mentioned. Some moth- standings in this study. However stress, which is ers said parental anxiety would itself affect this child's considered an important precipitant of asthma attacks lifestyle. [20], featured little in these discussions. Most of the Responses from Caribbean mothers ad- The employment of moderators from ethnic back- dressed the general effects of being unwell e.g. lack of en- grounds similar to the mothers' was positively received ergy and susceptibility to infections. Like English and commented on (particularly in the Caribbean mothers, the effect on education and lifestyle was em- groups). However participation and organisation of the phasised. Mothers expressed their concerns largely from sessions in terms of ethnic background was sometimes the child's point of view, but the effect on the parents was considered 'unnatural', particularly when groups were also mentioned. formed from a larger social and ethnically diverse group. Although a few mothers initially expressed concern Discussion about the filming and showing the boy, they later ac- This study demonstrates the range and depth of mothers' knowledged its purpose. Precise demographic informa- approaches to and knowledge about children's respirato- tion (e.g. husbands occupation) was not collected as it ry health generally. Mothers had been recruited to a 'dis- was considered too intrusive and could have affected re- cussion on child health' and shown a video clip of a boy cruitment and the discussion. Since no information with unnamed respiratory symptoms. This child had about participants' education was collected, some of the BMC Family Practice 2001, 2:4 http://www.biomedcentral.com/1471-2296/2/4 differences within and between groups may be related to the care of the child with breathing difficulties could be other variables such as education rather than ethnicity. facilitated. The prevention of bias was attempted at each stage of the study; from not saying it was about 'asthma', to using the Additional material video to prompt discussion and by utilising the mothers' own terms and exploring their understanding [21,22]. However, some participants said it was difficult to know Addtional files what was wrong with the child without having any con- 1. Coding section is key to symbols used in the extracts presented. textual information. In this way, mothers' reasoning is Additional file 1. 'Coding used in extracts'. 'Extract 1- English mothers in one session discussing the concept of asthma' similar to that of health care workers'. Since the aim of [http://www.biomedcentral.com/content/supplementary/1471-2296-2- the study was to explore mothers' own explanatory mod- 4-S1.rtf] els for the condition presented on video, mothers' re- Additional file 2. 'Extract 2- Bengali mothers in a Sylheti session sponses were both general about respiratory conditions discussing the perception of asthma' and specific to 'asthma'. It may have been helpful to [http://www.biomedcentral.com/content/supplementary/1471-2296-2- present other clips of different respiratory symptoms to 4-S2.rtf] Additional file 3. 'Extract 3- Caribbean mothers in one session discussing extrapolate that which they considered specific to asth- action they would take' ma. Other limitations of the method is that not all partic- [http://www.biomedcentral.com/content/supplementary/1471-2296-2- ipants contribute equally, discussion is more influenced 4-S3.rtf] by dominant members than those who are shy. In pre- Additional file 4. 'Extract 4- Bengali mothers in a Sylheti session senting general views between the groups overall, an in- discussing the possible effect of the condition' dividual comment may be lost. Additionally there may be [http://www.biomedcentral.com/content/supplementary/1471-2296-2- 4-S4.rtf] issues concerning translation even though the facilitator who conducted the Sylheti sessions also undertook the transcribing. Finally, it is important to acknowledge the difficulty in predicting how the responses given would Acknowledgements We owe our thanks to Queen Elizabeth Children's Hospital Research Ap- correspond to action in 'real life'. peal Trust for funding this study. We also thank the star of the video, com- munity group organisers, the facilitators and child carers for the sessions, Conclusion and the mothers themselves. One of the benefits of using focus groups is that the wider References community understanding can be reflected as much as 1. Cane RS, Ranganathan SC, McKenzie SA: What do parents of the individual response [23]. Also, by organising the wheezy children understand by 'wheeze'? Arch Dis Child 2000, groups according to language and ethnic background, 82:327-332 2. Cane RS, McKenzie SA: Parents' interpretations of children's cultural influences that may be relevant to outcomes in respiratory symptoms on video Arch Dis Child 2001, 84:31-34 respiratory health generally and asthma specifically may 3. Donnelly JE, Donnelly WJ, Thong YH: Parental perceptions and be identified [24]. The clearest example of these points attitudes toward asthma and its treatment: a controlled study Soc Sci Med 1987, 24(5):431-437 was in reports that some (other) Bangladeshi people con- 4. Duran-Tauleria E, Rona RJ, Chinn S, Burney P: Influence of ethnic sider asthma to be contagious. Each session, and ethnic group on asthma treatment in children in 1990-1: national cross sectional study. BMJ 1996, 313:148-152 group overall, developed a particular orientation to the 5. Kitzenger J: Introducing focus groups BMJ 1995, 311:299-302 discussion. The Bangladeshi group did not generally per- 6. Kai J: What worries parents when their preschool children ceive the issues as problematic (particularly here in Eng- are acutely ill, and why: a qualitative study BMJ 1996, 313:983- land and particularly in the Sylheti sessions) and were 7. Jones A, Pill R, Adams S: Qualitative study of views of health the most accommodating of the groups to the medical professionals and patients on guided self management plans profession and approach. The English mothers were gen- for asthma BMJ 2000, 321:1507-1510 8. Jones R, Finlay F, Crouch V, Anderson S: Drug information leaf- erally more questioning and critical and related broader lets: adolescent and professional perspectives Child Care Health issues of context and practice. The Caribbean mothers Dev 2000, Jan26(1):41-48 9. Lennon S, Ashburn A: The Bobath concept in stroke rehabilita- related their responses to their own direct experience tion: a focus group study of the experienced physiothera- and observations. No one approach should be considered pists' perspective Disabil Rehabil 2000, 22(15):665-674 'more correct' or 'better' than another. Whether these ap- 10. Kleinman A: Patients and Healers in the Context of Culture Berkeley: University of California Press 1980 proaches are indicative of general approaches to health 11. Pararajasingam CD, Sittampalam L, Damani P, Pattemore PK, Holgate would require more study. The perceptions of these ST: Comparison of the prevalence of asthma among Asian and European children in Southampton Thorax 1992, 47:529- members of 'the public' then, are rich, complex and in- sightful. By recognising these, communication in the 12. Elphick HE, Sherlock P, Foxhall G, Simpson EJ, Shiell NA, Primhak RA, partnership between health care worker and parent for Everard ML: Survey of respiratory sounds of infants Arch Dis Child 2001, 84:35-39 BMC Family Practice 2001, 2:4 http://www.biomedcentral.com/1471-2296/2/4 13. St Claire L, Watkins CJ, Billinghurst B: Differences in meanings of health: and exploratory study of general practitioners and their patients Fam Pract 1996, 13(6):511-516 14. Stone V: Environmental air pollution Am J Respir Crit Care Med 2000, 162:S44-S47 15. Hijazi N, Abalkhail B, Seaton A: Diet and childhood asthma in a society in transition: a study in urban and rural Saudi Arabia Thorax 2000, 55(9):775-779 16. Busse WW: The role of the common cold in asthma J Clin Phar- macol 1999, 39:241-245 17. Ernst E: Complementary therapies for asthma: what patients use J Asthma 1998, 35(8):667-671 18. Nocon A, Booth T: The social impact of childhood asthma In: Health and Disease: a reader Second edition (Edited by Davey B, Gray A and Seale C) Open University Press. Buckinghamshire 199583-88 19. MacDonald H: 'Mastering Uncertainty': mothering the child with asthma Pediatric Nursing 1996, 22(1):55-59 20. Sandberg S, Paton JY, Ahola S, McCann DC, McGuinness D, Hillary CR, Oja H: The role of acute and chronic stress in asthma at- tacks in children Lancet 2000, Sep16;356:982-987 21. Britten N: Qualitative Research: Qualitative interviews in medical research BMJ 1995, 311:251-253 22. Kitzinger J: The methodology of Focus Groups; the impor- tance of interaction between research participants Sociol Health Illness 1994, 16(1):103-121 23. Prior L: Beliefs and accounts of illness. Views from two Can- tonese-speaking communities in England Sociol Health Illness 2000, 22(6):815-839 24. Partridge MR: Editorial – In what way may race, ethnicity or culture influence asthma outcomes? Thorax 2000, 55:175-176 Pre-publication history The pre-publication history for this paper can be ac- cessed here: http://www.biomedcentral.com/content/backmatter/ 1471-2296-2-4-b1.pdf Publish with BioMed Central and every scientist can read your work free of charge "BioMedcentral will be the most significant development for disseminating the results of biomedical research in our lifetime." Paul Nurse, Director-General, Imperial Cancer Research Fund Publish with BMC and your research papers will be: available free of charge to the entire biomedical community peer reviewed and published immediately upon acceptance cited in PubMed and archived on PubMed Central yours - you keep the copyright BioMedcentral.com Submit your manuscript here: http://www.biomedcentral.com/manuscript/ editorial@biomedcentral.com http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png BMC Family Practice Springer Journals

Understanding childhood asthma in focus groups: perspectives from mothers of different ethnic backgrounds

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Publisher
Springer Journals
Copyright
Copyright © 2001 by Cane et al; licensee BioMed Central Ltd.
Subject
Medicine & Public Health; General Practice / Family Medicine; Primary Care Medicine
eISSN
1471-2296
DOI
10.1186/1471-2296-2-4
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Abstract

Background: Diagnosing childhood asthma is dependent upon parental symptom reporting but there are problems in the use of words and terms. The purpose of this study was to describe and compare understandings of childhood 'asthma' by mothers from three different ethnic backgrounds who have no personal experience of diagnosing asthma. A better understanding of parents' perceptions of an illness by clinicians should improve communication and management of the illness. Method: Sixty-six mothers living in east London describing their ethnic backgrounds as Bangladeshi, white English and black Caribbean were recruited to 9 focus groups. Discussion was semi-structured. Three sessions were conducted with each ethnic group. Mothers were shown a video clip of a boy with audible wheeze and cough and then addressed 6 questions. Sessions were recorded and transcribed verbatim. Responses were compared within and between ethnic groups. Results: Each session, and ethnic group overall, developed a particular orientation to the discussion. Some mothers described the problem using single signs, while others imitated the sound or made comparisons to other illnesses. Hereditary factors were recognised by some, although all groups were concerned with environmental triggers. Responses about what to do included 'normal illness' strategies, use of health services and calls for complementary treatment. All groups were concerned about using medication every day. Expectations about the quality of life were varied, with recognition that restrictions may be based on parental beliefs about asthma, rather than asthma itself. Conclusion: Information from these focus groups suggests mothers know a great deal about childhood asthma even though they have no personal experience of it. Knowledge of how mothers from these ethnic backgrounds perceive asthma may facilitate doctor – patient communication with parents of children experiencing breathing difficulties. pose of this study was to identify how mothers from dif- Background Diagnosing childhood asthma is dependent upon paren- ferent ethnic backgrounds understood a boy's 'asthma' tal symptom reporting. We have previously reported shown on video. The mothers were not told the name of problems in the use of words and terms [1,2]. The pur- the condition and did not have direct experience with di- BMC Family Practice 2001, 2:4 http://www.biomedcentral.com/1471-2296/2/4 Table 1: Structure for each session agnosed asthma. In this way an exploration of public un- derstanding about the condition could be achieved. A Questions asked in each session Abbreviation better understanding of public perceptions of an illness should improve communication and management of the illness with those seeking health care [3]. By studying * What do you think about what you have just seen? Initial prompt understanding with respect to ethnicity, the greater risk What do you call the difficulties this child has? Description of underdiagnosis of asthma in children from minority What do you think causes it? Explanation Have you met children who had similar difficulties? Experience ethnic groups may be reduced [4]. The use of focus What would you do if your child had difficulties like Action groups is an accepted method of understanding and ex- this? ploring people's knowledge [5–9]. In this study the focus Do you think this affects the child's life in any way? Expectation groups' discussions were semistructured. The six pre- planned questions were devised to elicit lay 'explanatory models' [10] in this case for understanding the condition Prompt questions only (not analysed separately) shown on the video. Method munity settings and were recorded by video and / or Sixty-six mothers aged 22 – 45 years and resident in east dictaphone. Ethics approval for the study was granted London, were recruited by advertising and by direct ap- from the local Health Authority. Participants completed proach to a 'discussion group on child health'. Using a re- consent forms and were paid. cruitment questionnaire that asked about a number of family illnesses including asthma, it was possible to enrol Each focus group session was transcribed verbatim. A mothers who had no family members with this disease preliminary analysis reviewed the features of each page without simultaneously introducing the particular sub- of text (e.g. consensus, disagreement). Two readers then ject. In addition to issues about cultural perceptions, reviewed the text for responses to each of the pre- there are translation issues for symptoms central to asth- planned questions. Comparison between the texts from ma such as 'wheeze' [11]. Groups of mothers were there- each session aided analysis. Responses to each of the fore arranged on the basis of similar language and ethnic pre-planned questions were elicited from within each backgrounds. These were 'Bangladeshi', 'White – Eng- session, then compared to the other sessions of the same lish' and 'Black – Caribbean'; the largest population ethnic group, before an overall ethnic group response groups for the area projected from the 1991 census (un- was derived. Results were then checked backed to the published from the London Research Centre). preliminary analysis to ensure proper representation in the extent of agreement. Three experienced moderators of the same ethnic back- grounds as the participants, conducted 3 semistructured Results focus group sessions each. Each session had 5–9 partici- 1 Question 1: Description pants, lasted between 40 minutes – 1 / hours and took Some Bangladeshi mothers quickly and confidently place over three months (November 1999 – February identified the boy's difficulties as 'asthma'. The other 2000). Two of the Bangladeshi sessions were conducted participants generally agreed with little discussion. in, and translated from, Sylheti dialect. In order not to Mothers in one Sylheti session discussed the equivalent make volunteers feel privacy was being threatened we Sylheti terminology. A feature of that discussion was ref- elected not to ask about country of origin, education and erence to breathing difficulties as 'called asthma general- other questions of status. ly'. There was some evidence in each of these sessions that some mothers may use the term 'asthma' broadly, At the start of each session a one minute long video clip for example; 'sometimes parents take their children to was shown. This was of a six year old boy with audible the clinicians and say that it is asthma when it's just a wheeze and cough (used in a previous study [2]). He was cough' and mothers who knew children who had asthma shown undressed to the waist so that chest movements when 'they were born'. could be seen clearly. He held a small microphone so that his breathing (although amplified) could be clearly English mothers described the boy's difficulties using heard. Thus visual and audible signals would be available general terms like 'difficulty in breathing', visual descrip- to the observers, mimicking as far as possible what tions, imitation and individual signs ('wheeze', 'rattle', would be observed by a parent of a child having an asth- 'cough'). 'Asthma' was a more immediate response in one matic episode. Participants were not told that the diag- session. Other respiratory illnesses were discussed and nosis was 'asthma'. Sessions were semi-structured (see discounted on various grounds; age ('too old for croup', table 1). The focus groups took place in convenient com- BMC Family Practice 2001, 2:4 http://www.biomedcentral.com/1471-2296/2/4 too young for smoking related problems), duration (un- ducing breathing difficulties) but hereditary factors were like 'panic attacks') and intensity ('whooping cough is only considered in one group. more violent'). 'Asthma' was generally recognised and accepted but with varying degrees of conviction. That the Many Caribbean mothers related their own observations boy had breathing difficulty was agreed in one session and experiences about poor health generally, emphasis- but the main discussion was about child health. In con- ing nutrition, concerns about 'junk food' and the impor- trast, mothers in another session discussed the concept tance of a 'good' diet for a strong immune system, and of asthma (see Additional file 1: [extract 1]). There were factors in the home and urban environment to respirato- some references to 'asthma' as a particular diagnostic ry problems. Climate comparisons between London and practice (given after a certain age), that can change over the West Indies were considered in part responsible. For time ('they used to say bronchitis, didn't they, but now example, one mother's niece whom 'you'll never even the modern word is asthma'), that diagnosis can be prob- know she is an asthmatic child' when she goes to Jamai- lematic and applied to a range of symptoms. ca. The West Indies was perceived as less 'boxed in', with 'the sea, fresh air, good food' and less stress as central to There was less discussion by the Caribbean mothers good health. about this question. They described what they saw both in terms of symptoms ('breathing difficulties', 'wheeze', In relation to the onset and exacerbation of breathing 'cough', 'rattle') and illness ('asthma', 'bronchitis', 'pneu- difficulties, exercise and psychological references were monia', 'whooping cough'). Although they discussed the occasionally made (particularly 'stress'). symptoms and possible illness, they were less confident than the other two groups in attaching a precise label. Question 3: Action Discussions were often related to their own children's All groups said that precipitants of breathing difficulties coughs and colds. However they clearly understood this should be avoided (described above). boy had more than a cough or cold. Some Bangladeshi mothers mentioned avoiding certain Question 2: Explanation foods; e.g. banana since it 'contains a liquid that irritates Common to all nine sessions, although to differing ex- the throat', and cold milk or ice cream. Going to a doctor tents, were 'pollution' (particularly traffic) and 'the envi- was considered the first move, although a few mentioned ronment' (weather, urban and home surroundings, and that 'doctors here don't even mention restricting foods'. parental smoking). Mothers used phrases such as Mothers said they knew 'automatically whether a cough 'brought on by', 'contributing factor' and 'related to' more is serious or not' as indicated by severity and duration than 'caused by' to discuss their explanations. (2–3 days). Mothers in one session said that if their doc- tor thought it serious or if they were unable to be seen, In addition to these themes, most Bangladeshi mothers they would go to an accident and emergency (A&E) de- mentioned 'hereditary' influences. Several mothers also partment. Paracetamol and menthol preparations were recognised 'the cold' or 'catching colds' as important. mentioned. This was explicitly related to asthmatic children that some knew saying that once they caught a cold, 'that's it'. Some English mothers decided what to do according to Damp and dust in the home were also mentioned. Moth- the context e.g. a first occurrence or acute illness. Dura- ers in two sessions discussed that other (non-specified) tion, severity, and 'assessing' (from practice and learning Bangladeshi people think it is 'contagious' (see from others) informed some responses. Some said they 1Additional file 2: [extract 2]). would go 'straight to the GP' (general practitioner), while others suggested menthol rubs, 'alternative stuff' (e.g. In the English sessions, the association between pollu- breathing techniques), getting advice from other moth- tion (including industrial emissions) and breathing diffi- ers or by 'reading up on it'. Some mentioned 'hoovering a culties was made explicit by some e.g. 'in the media bed down' and special bedcovers. There was concern everyone is telling you, there is more cars on the road ... about long term medications. In two sessions there was exhaust fumes are not good for you so you try and piece debate about health care systems in other countries it together'. 'Pollution' was also related to contamination ('where all GP routinely treat children under seven with of soil and the production of food; e.g. preservatives and homeopathy first'), a lack of complementary therapies food intolerance. In one session this was related to and 'unbiased information' (i.e. not drug company fund- broader issues of social organisation, economic systems, ed) available on the NHS. and health care practice (breast feeding, vaccinations and immunity). In each session the relationship of aller- Some Caribbean mothers said they would utilise their gies was discussed (either as a related condition or as in- normal strategy of what they do when their child is un- BMC Family Practice 2001, 2:4 http://www.biomedcentral.com/1471-2296/2/4 well with respiratory difficulties (e.g. menthol rubs, been formally diagnosed with asthma and mothers were types of foods). In two sessions discussion involved rem- not told this in order to explore their own understand- edies e.g. honey and lemon tea or West Indian remedies ings of the presentation. There were many ways of talk- such as 'bush tea'. These 'remedies' are either consumed ing about the boy's difficulties; from describing single (and included foods considered nourishing) or rubbed signs (general terms, specific sounds, visual descriptions on the body (e.g. soft candle wax). Mothers learnt about and imitation) to naming specific diseases, how they dif- remedies from family members. Some would not men- fer and when they may be considered the same. This tion these to their GP. Only one mother said she would breadth helps explain the previously identified differenc- find out what was wrong before trying a remedy. Most es between health care workers' and parents' reports of would first seek advice from their own family, friends symptoms [1,2,12]. These mothers describe the condi- and medical books (see 1Additional file 3: [extract 3]). As tion observed far more broadly than health care workers, with the other groups, decisions about the need to seek who tend to limit questions to cough, wheeze and short- medical advice were context dependent (e.g. severity of ness of breath. These findings are similar to those of a symptoms, the age of child). Some mentioned that at- study about what health means, where patients consid- tending A&E would be preferable to their GP (mention- ered 'health' more broadly than do general practitioners ing their GP was unhelpful, that surgery hours are [13]. limited and if symptoms were severe enough), however others were just as critical of junior doctors in hospitals. A central explanation for the boy's condition was pollu- tion, particularly from traffic. It is impossible to know Question 4: Expectations whether this is instinctive or informed (occasionally the Bangladeshi mothers in the Sylheti sessions were the media was specified). Although some studies have shown most divided about the possible outcomes of the boy's that children living near busy roads may have more res- condition (see 1Additional file 4: [extract 4]). Some re- piratory symptoms, the overall understanding about pol- sponses were specific to the perceived condition (e.g. lution causing or exacerbating asthma is unclear [14]. sometimes being unable to do sports) while others were However the concern about 'junk food' (particularly in generalised (e.g. 'weariness'). Medication was recognised the Caribbean groups) has since been confirmed by a to 'control' and help normalise the child's condition, but study showing a direct link to childhood asthma [15]. there was also worry about long term use. Despite the Similarly the role of the common cold with asthma dis- discussion about stigma of respiratory illness in Bangla- cussed in the Bangladeshi groups is well established [16]. desh, a mother gave the provision that maybe 'children Complementary approaches suggested by some English growing up here don't worry about these things'. mothers had been used by 59% of asthma patients in one study [17]. Finally, many of the expectations these moth- Most of the English mothers discussed exercise limita- ers had about the effect of the condition (restriction in tion. The general perception was that this condition is activity, changes to be made in the home, effect on school manageable, normality was possible provided things and parental worry) are similar to the experiences of were 'in moderation'. Psychological dependency on asthmatic children and their families' [18,19]. The evi- 'drugs' and missing school (from illness and attending dence from these studies supports the mothers' under- appointments) were frequently mentioned. Some moth- standings in this study. However stress, which is ers said parental anxiety would itself affect this child's considered an important precipitant of asthma attacks lifestyle. [20], featured little in these discussions. Most of the Responses from Caribbean mothers ad- The employment of moderators from ethnic back- dressed the general effects of being unwell e.g. lack of en- grounds similar to the mothers' was positively received ergy and susceptibility to infections. Like English and commented on (particularly in the Caribbean mothers, the effect on education and lifestyle was em- groups). However participation and organisation of the phasised. Mothers expressed their concerns largely from sessions in terms of ethnic background was sometimes the child's point of view, but the effect on the parents was considered 'unnatural', particularly when groups were also mentioned. formed from a larger social and ethnically diverse group. Although a few mothers initially expressed concern Discussion about the filming and showing the boy, they later ac- This study demonstrates the range and depth of mothers' knowledged its purpose. Precise demographic informa- approaches to and knowledge about children's respirato- tion (e.g. husbands occupation) was not collected as it ry health generally. Mothers had been recruited to a 'dis- was considered too intrusive and could have affected re- cussion on child health' and shown a video clip of a boy cruitment and the discussion. Since no information with unnamed respiratory symptoms. This child had about participants' education was collected, some of the BMC Family Practice 2001, 2:4 http://www.biomedcentral.com/1471-2296/2/4 differences within and between groups may be related to the care of the child with breathing difficulties could be other variables such as education rather than ethnicity. facilitated. The prevention of bias was attempted at each stage of the study; from not saying it was about 'asthma', to using the Additional material video to prompt discussion and by utilising the mothers' own terms and exploring their understanding [21,22]. However, some participants said it was difficult to know Addtional files what was wrong with the child without having any con- 1. Coding section is key to symbols used in the extracts presented. textual information. In this way, mothers' reasoning is Additional file 1. 'Coding used in extracts'. 'Extract 1- English mothers in one session discussing the concept of asthma' similar to that of health care workers'. Since the aim of [http://www.biomedcentral.com/content/supplementary/1471-2296-2- the study was to explore mothers' own explanatory mod- 4-S1.rtf] els for the condition presented on video, mothers' re- Additional file 2. 'Extract 2- Bengali mothers in a Sylheti session sponses were both general about respiratory conditions discussing the perception of asthma' and specific to 'asthma'. It may have been helpful to [http://www.biomedcentral.com/content/supplementary/1471-2296-2- present other clips of different respiratory symptoms to 4-S2.rtf] Additional file 3. 'Extract 3- Caribbean mothers in one session discussing extrapolate that which they considered specific to asth- action they would take' ma. Other limitations of the method is that not all partic- [http://www.biomedcentral.com/content/supplementary/1471-2296-2- ipants contribute equally, discussion is more influenced 4-S3.rtf] by dominant members than those who are shy. In pre- Additional file 4. 'Extract 4- Bengali mothers in a Sylheti session senting general views between the groups overall, an in- discussing the possible effect of the condition' dividual comment may be lost. Additionally there may be [http://www.biomedcentral.com/content/supplementary/1471-2296-2- 4-S4.rtf] issues concerning translation even though the facilitator who conducted the Sylheti sessions also undertook the transcribing. Finally, it is important to acknowledge the difficulty in predicting how the responses given would Acknowledgements We owe our thanks to Queen Elizabeth Children's Hospital Research Ap- correspond to action in 'real life'. peal Trust for funding this study. We also thank the star of the video, com- munity group organisers, the facilitators and child carers for the sessions, Conclusion and the mothers themselves. One of the benefits of using focus groups is that the wider References community understanding can be reflected as much as 1. Cane RS, Ranganathan SC, McKenzie SA: What do parents of the individual response [23]. Also, by organising the wheezy children understand by 'wheeze'? Arch Dis Child 2000, groups according to language and ethnic background, 82:327-332 2. 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Kai J: What worries parents when their preschool children ceive the issues as problematic (particularly here in Eng- are acutely ill, and why: a qualitative study BMJ 1996, 313:983- land and particularly in the Sylheti sessions) and were 7. Jones A, Pill R, Adams S: Qualitative study of views of health the most accommodating of the groups to the medical professionals and patients on guided self management plans profession and approach. The English mothers were gen- for asthma BMJ 2000, 321:1507-1510 8. Jones R, Finlay F, Crouch V, Anderson S: Drug information leaf- erally more questioning and critical and related broader lets: adolescent and professional perspectives Child Care Health issues of context and practice. The Caribbean mothers Dev 2000, Jan26(1):41-48 9. Lennon S, Ashburn A: The Bobath concept in stroke rehabilita- related their responses to their own direct experience tion: a focus group study of the experienced physiothera- and observations. No one approach should be considered pists' perspective Disabil Rehabil 2000, 22(15):665-674 'more correct' or 'better' than another. Whether these ap- 10. Kleinman A: Patients and Healers in the Context of Culture Berkeley: University of California Press 1980 proaches are indicative of general approaches to health 11. Pararajasingam CD, Sittampalam L, Damani P, Pattemore PK, Holgate would require more study. The perceptions of these ST: Comparison of the prevalence of asthma among Asian and European children in Southampton Thorax 1992, 47:529- members of 'the public' then, are rich, complex and in- sightful. By recognising these, communication in the 12. Elphick HE, Sherlock P, Foxhall G, Simpson EJ, Shiell NA, Primhak RA, partnership between health care worker and parent for Everard ML: Survey of respiratory sounds of infants Arch Dis Child 2001, 84:35-39 BMC Family Practice 2001, 2:4 http://www.biomedcentral.com/1471-2296/2/4 13. 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Thorax 2000, 55:175-176 Pre-publication history The pre-publication history for this paper can be ac- cessed here: http://www.biomedcentral.com/content/backmatter/ 1471-2296-2-4-b1.pdf Publish with BioMed Central and every scientist can read your work free of charge "BioMedcentral will be the most significant development for disseminating the results of biomedical research in our lifetime." Paul Nurse, Director-General, Imperial Cancer Research Fund Publish with BMC and your research papers will be: available free of charge to the entire biomedical community peer reviewed and published immediately upon acceptance cited in PubMed and archived on PubMed Central yours - you keep the copyright BioMedcentral.com Submit your manuscript here: http://www.biomedcentral.com/manuscript/ editorial@biomedcentral.com

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BMC Family PracticeSpringer Journals

Published: Sep 26, 2001

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