Actividades de la propuesta didáctica musical

The collection o f data from medical records

Ideally the medical records would have provided a basis for addressing two interacting issues; whether there was a significant difference between the historical and current characteristics of the conditions, and whether there were significant differences between characteristics (historic and/or current) of those women who were interviewed and those not. To address both of these issues it was necessary to review the historic (paediatric) and the current (adult) medical records for each group.

Attempts to conduct this review were fnistrated by two areas of difficulty. Firstly there was a lack of accessibility of the relevant records. In respect of the women with CAH some of the adult records were not available as adult consultants or general practitioners failed to respond to enquiries. For women

with diabetes the paediatric medical records could not (in almost all cases) be accessed because their current records did not include details of the relevant paediatric hospital. Secondly the contents of the adult records were such that they provided virtually no information relevant to the issues of the present study and no basis for comparability with the paediatric records.

As a result of these difficulties it was not practical to consider the issue of the comparison between adult and paediatric characteristics. Furthermore the comparison between those interviewed and those not interviewed could be made only on the basis of the paediatric medical records of the CAH women. The procedure for this comparison is outlined below and the results are reported in a later section.

The required information on the paediatric status of the CAH group was recorded on data sheets (see Appendix II). The information covered the following areas:

Diagnosis: age at, level o f genital abnormality, and presence of salt loss;

Operations: age at and type

Related physical Characteristics: presence o f cushingoid features, muscular habitus, hirsuteness;

SeccMidary sexual characteristics: age and development o f menstrual function, breast and pubic hair;

Growth and Development: height and weight, comments made about psychosocial problems including referral to psychological services.

The paediatric information on women with CAH who agreed to participate and those who did not were statistically compared for age at diagnosis, age at and number of surgical operations, level of genital abnormality at diagnosis (Trader, 1954), and referral to psychological services. As the groups did not significantly differ on any of these, the interviewed group of women with CAH appeared to be representative of the paediatric sample. Details of the above data and analysis are given in Appendix III.

Trader’s (1954) classification is based on the level of genital abnormality at birth and has five categories that range from 1 (normal female genitalia) to 5 (fully masculinised penis and fused labia without testes). Table 2 shows the distribution of the levels of masculinisation at diagnosis and the types of surgical repair for the CAH women who were interviewed. On this criterion, the sample represents a group of severely masculinised women, with clitoridectomy (removal of the clitoris) and vaginoplasty (opening of the vagina) the most frequently performed surgery.

TABLE 2: Levels of severity of masculinisation at diagnosis and types of surgery for interviewed CAH women

Trader category Clitoral recession Clitorid­ ectomy Vulvo- plasty Vagino­ plasty Vaginal dilation 2/3 (mild) N = 5 (28%) 1 3 1 4 1 4/5 (severe) N = 13(72%) 1 12 4 10 1 TOTALS N =18* 2 15 5 14 2

T h e in te r v ie w s

The role o f the Interviewer in qualitative research

Research, the aim of which is the understanding of underlying assumptions and meanings placed by individuals on their experiences, necessitates the provision of an atmosphere at interview that enables the exploration of experiences in an insightful, open-ended way. The objective of the interviews was therefore, two­ fold: to allow the interviewees to explore and describe areas considered by them to be important, and to cover homogeneous topic areas with all interviewees so as to allow comparison of similarities and differences between the women, and between the groups. It has been suggested that such an atmosphere is best provided by an interviewer who shows the qualities of warmth, empathy, genuineness and understanding (Truax and Carkhuff, 1967) and this requirement in the current study was particularly important as some of the topic areas were both sensitive and intimate. The role and status of the interviewer is complex in a situation with these requirements. The traditional paradigm of the scientifically respectable interview appeals to such values as objectivity, detachment, and status hierarchy as the essential components. Disregarding these requirements has been considered to result in biased data - biased because of the possible communication of the views, attitudes and values of the interviewer to the interviewee.

This bias becomes particularly acute when the interviewer is perceived as an 'expert - someone who is perceived to have special knowledge and status. In the study reported here, it was extremely likely that the interviewer would be seen

as a member of the hospital consultants’ team and thus as a status figure. Hollway (1989) and Oakley (1990) have both argued that this problem is not best resolved by remaining silent; lack of information in such a situation serves to increase the possibility that the assumptions of the interviewee will be consolidated. These authors propose that in qualitative research, where the target data are subjective aspects of experience, hierarchical power relationships should be avoided so as to reduce the probability of such bias, and that a democratic position should be adopted. This position entails the interviewer becoming part of the research rather than retaining the detached role advocated by traditional interviewing theory. Certainly it became clear at the first pilot interview that a position of detachment was unlikely to produce the type of information required. Information presented as 'factual' ('Yes, I went to the hospital three times a year, and it was alright, the doctors were kind.') was given rather than that which allowed an understanding of the perceived meaning of the visits. It must be recognised that in the case of many of these women, it was misleading to believe that answers to questions or clear descriptions of feelings or experiences were readily available to them. Frequently the women with CAH had never discussed their experiences with anyone before the interview, and as Weedon (1987) argues the verbal description of experiences is an important factor in the interpretation of those experiences.

The interviewer has also to avoid biasing the discussion by providing verbal or non-verbal cues that may be perceived as an indication of the importance of any particular content of the discussion. The selection by the interviewee of what was appropriate information is likely to be effected by the perceived demands of

the interview situation (Cannell and Kahn, 1968). The necessity for the interviewer to catch not only the words but also their meaning for the speaker - what was said and what was meant- all indicated that a participating role for the interviewer was most appropriate. The techniques which were used to encourage both of these requirements - the selection of important topic areas, and the valid interpretation of the meaning of the women’s statements will be further discussed in a later section of the report.