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AIDS Care: Psychological and Sociomedical Aspects of AIDS/HIV Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/caic20
The impact and use of written leaflets as a counselling alternative in mass antenatal HIV screening a
L. Sherr & B. Hedge
a
a
Department of Clinical Psychology , St Mary's Hospital , Praed Street, London, NW2, UK Published online: 25 Sep 2007.
To cite this article: L. Sherr & B. Hedge (1990) The impact and use of written leaflets as a counselling alternative in mass antenatal HIV screening, AIDS Care: Psychological and Socio-medical Aspects of AIDS/HIV, 2:3, 235-245, DOI: 10.1080/09540129008257736 To link to this article: http://dx.doi.org/10.1080/09540129008257736
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AIDS CARE, VOL. 2, NO.3,1990
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The impact and use of written leaflets as a counselling alternative in mass antenatal HIV screening L. SHERR & B. HEDGE Downloaded by [University of Sydney] at 16:51 02 May 2015
Department of Clinical Psychology, St Mary’s Hospital, Raed Street, London NW2, UK
Abstract Re-test counselling has been seen as a pre-requisite for HIV screening. As HIV moves into the heterosexual community, the role of HIV screening in ante-natal care has increased. As vertical transmission is the major conm’butor to pm‘natal infection HIV screening of pregnant women has become a reality. The pregnant population comprises large numbers, the practical dimulties of routine pre-test counselling and the informational demand from pregnant women themselves has necessitated the provision of ante-natal leaflets about HIV infection and AIDS. A sumey of 24 London hospitals revealed only three leaflets in use, two fiom one hospital and one from an AIDS Charity. A content evaluation of the leaflets revealed varying readability, elements of bias and presentation factors which may all aflect the usefilness of such leaflets. An in depth qualitative group on the leaflet with highest readability revealed particular concems and highlighted the fact that the leaflets could be seem as additions and addendums to counselling but were not sufiient in themselves. Introduction
As the widespread use of HIV screening expands, the financial cost and resource limitations of pre- and post-test counselling become a serious issue. This is difficult to resolve given the high psychological cost of an HIV test on an individual and the proven benefits of pre- and post-test counselling (Miller & Pinching, 1989). In many centres (MMWR, 1990) counselling is incorporated into the provision of HIV screening, yet in others, particularly high volume testing in low prevalence areas, counselling has been overlooked, abandoned or substituted with a more mass approach, such as written leaflets, displayed posters, or group approaches. The psychological, financial and medical efficacy of this is unclear. This paper examines the role of ante-natal HIV screening in the light of counselling demands, alternatives and their availability in London. Centres world wide have embarked on ante-natal HIV testing (Medbo, 1989, Novick, 1989; Hoff et al., 1988). Very few include standard pre-test counselling (Wenstrom, 1989; Johnston el al., 1989) although pre- and post-test counselling are taken with other client groups as prerequisite in HIV testing (Miller, 1987; Green, 1989; WHO, 1988; CDC, 1990). At some centres where mass screening is inevitable-such as blood banks-written forms of Address for correspondence: Lorraine Sberr, Deparunent of Clinical Psychology, St Mary’s Hospital, Praed Street, London W2 INY.
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236 L. SHERR & B. HEDGE information have been provided. The efficacy and adequacy of these have not been rigorously tested. However those donating blood do differ from other patients in that they are well, and are attending voluntarily. Ante-natal HIV testing differs in that these are clients attending for their well being and for monitoring of their unborn child. They are exposed to a wide range of screening-some of which in itself is open to question (Chalmers, 1989; Marteau 1989). They comprise a unique population and although they are clearly indicative of sexually active people (by virtue of their pregnancy) they may differ from the heterosexual population at large as they are practicing unsafe sex in order to conceive, they may be more likely to be in a stable relationship and they represent only the female part of the heterosexual couple. Thus the extent to which any data gleaned from this population can be used to predict behaviour in the general heterosexual population at large is limited. There may be some psychological cost linked with HIV testing (Stevens et al., 1989) despite the fact that women may want such a test to be available on offer (Howard et al., 1989; Thomas et al., 1989). The use of HIV testing in pregnancy has many pitfalls and limitations. The HIV antibody test is a limited diagnostic tool. It can detect antibodies to the Human Immuno Deficiency Virus (HIV) and thereby indicate whether an individual has been exposed to the virus associated with Acquired Immune Deficiency Syndrome (AIDS). As an imperfect tool the test cannot tell whether or when an individual will progress to AIDS. It gives no indication of disease state nor time of infection. The test cannot identify how an individual was infected. Antibodies to HIV can take up to 12 weeks to appear. Thus immediately after infection, and at a time when an individual is probably highly infective, a negative HIV test result is possible, even highly likely. The test cannot tell whether the virus will be transmitted to the fetus. HIV testing carries with it an enormous emotional cost, unlike any other screening test. As such testing ought not to be taken lightly (Miller & Pinching, 1989). Some workers (Fox et ul., 1987) have reported that negative tests may be used as ‘permission’ to continue risky behaviour. This is a counter productive use of the test. Severe psychological distress has been associated with HIV testing (Miller & Green, 1986; Miller et al., 1986; Green & McCreaner, 1989; Stevens et ul., 1989). This problem has been widely noted and hence it has become standard good practice not to offer HIV screening without considerable pre- and post-test counselling Bayer, 1989). The arguments for the provision of HIV testing relate to the fact that trans-placental spread of HIV is possible and, indeed, may account for the majority of infant infections globally. HIV can cross the placenta and infect an unborn foetus with various degrees of vertical transmission ranging from 0 to 65% (Friedland, 1987; Scott et al., 1985; Minkoff et af., 1987) in early studies and closer to 25% in later studies which were prospective and better controlled (European Collaborative Study 1988). This prognosis deteriorates if the mother is symptomatic or has given birth to a baby previously who has suffered from AIDS. This raises many challenges in obstetric and paediatric care. The presence of HIV in pregnancy may have profound implications for management, decision making, and pregnancy outcome. HIV testing can be carried out for a number of reasons: 1 . Epidemiological surveys 2. At the request of the mother 3. At the request of the health care provider.
Decisions to screen for HIV will depend on multiple factors. In regions of high background infection, the decision may be different from areas of low infectivity. Personal risk behaviours in the individual may also be indicators. These include sharing needles in
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intravenous drug use, having a partner identified with higher risk behaviour, emanating from an HIV endemic area, or being the partner of an individual infected by HIV. Testing for the convenience of health care workers should be discouraged. There is no cure for HIV and thus the medical solutions are limited. HIV often arouses extreme reactions in families and medical practitioners alike. Any screening which may result in staff being unwilling to treat a woman is not in the best interest of the woman and ought to be discouraged. Good standards of infection control for all patients and education ought to replace such policies (Brierly, 1989). Screening for epidemiological reasons and sero-prevelance surveys raises other concerns. It is generally accepted that sero-prevelance data is necessary for service planning. Although this may justify anonymous screening, these ideas need careful thought. The costs of such studies need to include provision, not only for testing and laboratory analysis but also for remedying or rectifying psychological harm and anxiety which may surround such screening. Such studies should be time limited and should only continue while meaningful and useful data is gathered. Often such goals and aims are not clearly thought through and sero-prevelance studies are continued beyond a useful period. Pregnant women have been the focus of world-wide sero-prevelance studies. Large numbers of pregnant and parturent mothers have been subjected to HIV screening-Ryder et al. (1988) 8,108; Medbo et al. (1989) 165,000; Ippolito et al. (1990) 39,102; Hoff et al. (1988) 30,708; Kantanen et al. (1988) 9,202; Nsa et al. (1989) 12311, Nzilambi er al. (1989) 7,000. Few studies to date have reported any parallel pre- and post-test councelling with this group-unlike Wenstrom (1989) and Johnston et al. (1989). Either it is simply ommitted, or the failure to report it reflects the fact that this group is seen as less deserving of psychological support than other groups. T l s would be a sad situation given the fact that pregnant women may be a vulnerable and disadvantaged group in society. They enter medical care with an element of trust and abdication of control (Reid, 1980). Fears of the unknown and concern for the safety of their baby may be overriding decisive tools to encourage women to agree to a wide range of testing. In various situations they may not be a good sample to reflect general heterosexual infection. If testing is truly in the pregnant woman’s interest it is unclear what are the optimum times for testing. Indeed continuous testing may be more effective given that pregnant women invariably continue to have sexual relationships during a pregnancy and these tend, on the whole, to be unprotected. There are no studies of HIV sero-prevelance testing being carried out on the partners of such women. At times seroprevalence studles may duplicate data. For example the UK government launched a seroprevalence study on January 16th 1990 in pregnant women, despite the fact that Peckham er al. (1989) reported comprehensively on PKU testing in inner and outer London on 115,000 samples which gave high level data and strong recommendations for the very sample to be subsequently tested. The cost of HIV pre- and post-test counselling could be formidable given the high number of pregnant women. Alternatives have been suggested not only to provide information but to ensure truly informed consent and to obviate the needs for full time counsellors in such clinics. Written information has been used in many clinical settings to supplement, substitute or reinforce verbal communications. Written material has many advantages (Ley, 1989). Its construction can be done out of the clinical encounter, thus allowing time and effort to present a more carefully thought out and formulated piece. In addition it is endorsed by patients who universally seem to respond positively to written information and state that they desire it (Morris & Groft, 1982). Yet the efficacy of such material must depend on the standard of the content, the extent to which it is noticed, read, comprehended, recalled and believed.
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238 L. SHERR & B. HEDGE Research evaluations of these factors are varied. Many workers have documented high proportions of patients reading written material: 49-95% Ley (1988) 72% Kanouse er al. (1 981). Furthermore workers have reported that patients subsequently keep such information for future reference. Ley (1989) reviewed the literature on the understandability of such written material and found that the majority of written documents would not be understood by over two thirds of the general population. He concluded that “a considerable amount of written material for patients is of too high a difficulty level”. Furthermore, forgetting rates are high; compounded if leaflets were difficult to read or understand. A series of intervention studies have shown that written information could be improved with overall simplification. Such attempts not only enhanced readability, but improved the majority of outcome measures when these were taken: accuracy of medicine taking (Ley et al., 1975) and weight loss (Ley, 1978). Ley (1988) reviewed seven studies with 13 effect comparisons and found 10 to show significant increases in recall with simplification. In the light of such literature it seems necessary to examine the efficacy of any such written material for AIDS/HIV and pregnancy, to examine the extent to which it is available and how it is perceived by providers of care and those in receipt of leaflets. It is important to clarify whether written material can substitute counselling and whether it is used as an alternative in some clinics. This study examines:1. The availability and usefulness of written material about HIV testing in antenatal clinics in London, UK. 2. The impact of such material on pregnant women. 1 Availability and usefulness of written material
Method A survey of 24 London Hospitals revealed three leaflets explaining the implications of HIV infection for pregnant women currently in use at antenatal clinics. The majority of hospitals had no written information available. Of those who had such information three leaflets were identified. Two leaflets emanated from one hospital (a centre of high numbers of HIV and AIDS cases-Leaflet A and B). The other leaflet was one published by an AIDS charity set up to provide information and education in the UK (Leaflet C). This latter leaflet was reported by all those hospitals who had any information. All leaflets appeared only in an English Language ehtion. A detailed analysis of the three leaflets was carried out. Specifically the information presented was assessed for factual errors and omissions, readability, presentation and bias towards or against maternal testing for HIV infection. (i) Factual errors and omissions. The leaflets were scanned by two experts working within the field of HIV for errors which may limit the usefulness of such leaflets and misguide readers. Errors were judged to have occured when both judges, independently reported a statement to be incorrect and where referenced substantiation to the correct facts was obtainable. Omissions were judged to have been made when both judges independently reported a fact to be necessary for the understanding of HIV within the context of an antenatal clinic, which was not covered by the written information.
(ii) Readability. The three leaflets were analysed for readability according to the Flesch
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Formula. This formula gives an ease of readability score which can be taken as an indication of the number of people who could easily read the piece and gives an estimate of the IQ needed to understand its contents. The leaflets were analysed as a whole and by information themes. The Flesch Formula has been used extensively (Ley, 1988). Higher readability correlates with outcome variables such as readiness to read a piece, ability to recall it, satisfaction and understanding.
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(iii) Resentarion. Presentation of the leaflets was assessed using a pre-set schedule. All three leaflets were scored with respect to visual impact, type quality, colour, contrast and graphics. (iv) Bias. The leaflets were given to a group of 15 female coders, working blind, to rate bias of the leaflets. Coders were asked to record their impression of the leaflets as to whether they were pro-testing, $gainst testing, or neutral. (v) Posuiwe aspects of the leajets. The same experts were asked to note the positive aspects of each leaflet, and the advantages of such material.
Results (i) Factual errurs and omissions. All three leaflets were found to contain some errors and omissions. Readability gives no indication of these but scanning by two experts working in AIDS revealed errors which may limit the usefulness of such leaflets and misguide readers. Errors and ommissions included: misuse of terms HIV and AIDS. These terms were often used interchangeably. Reference was made to the ‘AIDS Test’. There is no AIDS test available; the test is essentially an HIV test. Confusing messages were presented about disease progression and misleading suggestions were provided concerning appropriate treatment. These revolved around vague statements about the doctor being able to provide care. The .total inaccuracies and ommission scores for each leaflet were: Leaflet A Leaflet B Leaflet C
9 7 3
(ii) Readubility. Table 1 below sets out the readability scores for the three leaflets. It can be seen that the second hospital leaflet and leaflet C were the highest in terms of readability. 75% of the population could be expected to understand these leaflets. A number of common themes emerged from the leaflets. Table 2 below sets out the extent to which the leaflets contain these themes and the readability of passages within each leaflet. The readability ranged from 24%-86% of the population being able to understand specific passages. It is noticeable that leaflet A contained less information than leaflets B and C and the lowest readability scores (24%) were obtained for passages in Leaflet A. It can also be seen that B and C were not consistent in the passages which rated low on readability.
240 L. SHERR & B. HEDGE Table 1. Readabtluy scores /or three pregnancy and HIV leapers according 10 the Fierch Formula Leaflet B
A
725 37
Number of words Number of sentences Readability Score % Populatioa who understand 1Q necessary
53.3
40 104
-
919 48 65.3
-13
90 +
C 1409 91 65.2 75 90 +
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Table 2. Common themes and their readabiliry % Population who should understand
A Introduction Pre-prcg Testing Advisability of Test Should everyone have test What is HIV Test Disadvantages of Test Possible effects on Baby More Information Risks/How Infected What does + ve Test Mean What does - ve Test Mean Termination Birth Breast Feeding
B
C
90 75 55 80 40 40 75
80
-I>
21 24 40
75 55
no
--
13
86 40
75 75 80 75 40 64 -
-I3
40
-I3
(iii) Presentation. Table 3 below indicates how different the presentation of the three leaflets is. (iv) Bias. Figure 1 below sets out the results. Leaflet B was seen as most unbiased. A constant 25% rated leaflets to be biased towards testing. (v) Positioe aspects. The existence of the leaflets were seen as an overall positive step. It was felt that the presence of the l e d e t would allow women permission to address this subject. The provision of written information was seen as favourable. This would allow for easy access to factual information which women could take home with them for further reference. AIDS and HIV often receives lugh press profile and accurate information may be an antidote for anxiety or concerns. It may also help women to understand their own risks. 2. Impact
Given the previous analysis, the leaflet with lughest readability (Leaflet B) was subjected to a qualitative group analysis. A small group of recently delivered mothers comprised this
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Table 3. Resentation of leapers A
B
C
size
4 pages
4 pages
6 pages
TYK
Typed White with black print
Pnnted
Printed
White with black print & red relief
iMultl colour
Pictures. .Multi-culture images. teddy bears, passive women, male health carer Professional Caring
FACTOR
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Colour
Graphics
No pictures
No pictures
Visual impact
Amateur
Professional Alerting
Borlng
soft pastels
80-
fE 0
-
: F
-6 c
0
Agarnst
60-
II
-8
Towards
w Unbiased
.
40-
-
-3 20-z
a ? -
0-
Hospital 1
Hospital 2
AVERT
Figure 1. Testing bias in the three leafleu.
qualitative group. They were used as they could identify with the issues but as antenatal tests were not now relevant to them they could have a meaningful discussion without antenatal HIV testing being something they would be faced with.
Method A group of nine women were gathered. They were instructed to read the leaflet for a group discussion. They were told that their own personal opinions were sought and guaranteed anonymous and confidential.
Results The themes that emerged from the discussion were as follows:
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L. SHERR & 8. HEDGE
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(i) Impact. They indeed found the passages that had previously revealed low Flesch Formula scores difficult to read which resulted in confusion and in loss of interest. They showed concern about passages giving incomplete information. Omissions were frustrating for the readers and increased anxiety. The mere presence of the leaflet was seen as advocating testing. They felt that procedural information was lacking. This related to items such as when was a termination safe, when was testing advised, how long before results, what were the implications? They endorsed sub-headings which enhanced readability and comprehension.
(ii) Acceptability. The group spent a large amount of time discussing acceptability. They were concerned about distribution of the leaflet. They suggested three possible methods and commented thereon. The first option which is commonly used in ante-natal care is the use of postage whereby the leaflet was sent to all women. The group members felt that leaflets should not be mailed. Subjects may misguidedly feel that the posted leaflet was meant as a personal message. On the other hand, if a subject received such a document in the post it may raise initial concerns which could not be immediately addressed as they had no direct access to a counsellor or health care worker. This point was emphatically endorsed by all participants. It is important to note that many of the leaflets are mailed as a matter of routine in antenatal care. The second option commonly in use with other material is to allow for a self service selection from available racks in waiting areas or clinic entrances. This removed personalising the leaflet but all subjects felt the social stigma attached to AIDS may discourage anyone from talung a leaflet off the rack in a public place. The third option was a private and personalised avenue where it was given as part of a wider standard information package. This was the most agreeable form resolved by the group. They felt that people would not feel singled out but could raise questions with the individual who had given them the data. They also felt that written information needed time to absorb and subjects may want follow-up and discussion opportunities at a later date. Subjects in the group perceived a pro-testing bias. All subjects found that the leaflet created an information need rather than resolving queries on this sensitive subject. (iii) Counselling a l m a t i v e . The group thought the leaflet served as a means of opening a discussion but in no way substituted pre-test counselling. They felt the leaflet could be used to help staff who may want to avoid missing out bits of information if the counselling was repetitive. They also felt it was a good idea for women to have something in written form to take away with them. The issue of testing was stressful and this may result in women missing out questions or having reduced recall. Some of the items raised concerns with the women who previously held unclear information. They found some of the facts somewhat frightening. The voiced worries about attitudes staff may hold towards them if they discussed risk behaviours. They were also unsure about the extent to which staff would be proficient at dealing with delicate sexual concerns.
Discussion It appears that the amount of information avadable in antenatal clinics in London is limited. Only one hospital had generated its own personal information package. The other leaflet was
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not a Government or health education leaflet, but the result of an individual charity which identified this need. Leaflet construction is always difficult. Errors can create misconceptions which could be counterproductive and create more harm than they address. The leaflets which do exist contained a number of factual errors and omissions. Particular difficulties were encountered when the question of medical uncertainties arose. For example, the subject of breast feeding was either omitted or dealt with in very vague terms. This is an important issue and needs to be handled carefully, giving clear advice and reporting on the limited data with their ambiguous messages on which this advice is based. The readability of leaflets is variable. The earliest attempts (A) was poor. This leaflet was piloted and revamped (B). It emerged much improved from this procedure. Readability, it must be remembered, gives no indication of content and accuracy. Although an overall mean readability score which indicates that 75% of the population can be expected to understand is a high score relative to other medical documents (Ley, 1977) it is of some concern that 25% of the population would be missed. This, of course, does not take into account those who are unable to read and those who cannot understand English. The presentation of the leaflets is important; an unattractive leaflet is unlikely to be picked up or read. Even the most accurate and readable leaflet is impotent if not consulted. There is a whole body of literature on health education and health marketing (e.g. Tones 1989) which shows the necessity for good format in health promotion literature. It is of no less importance here. Although leaflets should provide objective data to facilitate decision making or simply to inform-it is difficult to construct bias free leaflets. Such bias was certainly perceived by observers with these examples. The leaflets that exist need to consider their aims and impact prior to use. As a basic pre-requisite readability needs to be consistantly high. Simple piloting is easy to mount and should be routinely adopted prior to launching. In many countries the initial reaction to AIDS and HIV informational needs has been the creation of leaflets. Although leaflets do have a place in health education, this is limited. The content and level of the l e d e t is an immediate limitation. Bias, perceived reasons behind the leaflet and availability and accessability may all detract from the usefulness of such tools. They may meet a need and play a central role in information addition, but they may not be able to replace counselling. Furthermore with a sensitive topic to a vulnerable group they may be an addendum but not suffice in their entirity. If the leaflets serve to raise the topic of AIDS it is important that the staff to whom pregnant women turn are competent and skilled in HIV counselling. Sherr (1987) has shown that staff often lack fundamental knowledge about HIV infection. Counselling skills are a specialised area of expertise and many obstetric workers may have highly specialised skills in their own field, but have limited training and practice in counselling. The use of small qualitative groups has its limitations in that their views may not necessarily represent those of the whole group. More intense research is needed to evaluate group attitudes as a whole. However, in depth discussion can provide an insight into the kinds of problems, solutions and obstacles that may be of potential concern to this client group. This study may also serve to highlight the importance of pre-testing of material or approaches. This can be done in a relatively small scale manner with a limited number of women, but may be crucial to ensure that the aims and goals of written material are focussed to meet the needs of the client group and are constructed in ways which will best assure that they are achieved. Leaflets are not solution to AIDS and HIV counselling. They form one small component and run the risk of creating needs and anxiety rather than resolving these.
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NOWCK, L.F., BERNS,D., S ~ C O PR., er ul. (1989) HIV seroprevalence in newborns in New York State, Journal of the American Medical Associarion, 26 1, pp. 1745- 1750. NSA, W., MANZILA,T., Mw, M., ATELA LA, B., HASSIG,S. & RYDER,R. (1989) Causes of specific morbidity in the first 18 months of life in 477 infants, Paper presented at the International Conference on AIDS, Montreal, WG04. PECKHAM,C., TEDDER, R.S., BRIGGS,M., ADD, A.E., HJELM,M., Wlrcox, A., PARRA-MEJIA, N.O. & CONNOR,C. (1989) Prevalence of maternal HIV Infection based on unlinked anonymous testing of newborn babies, Lancer, 57, p. 516. REID, M.E. & MCILWAINE,G.M. (1980) Consumer opinion of a hospital ante natal clinic, Social Science and Medicine, 149, pp. 363-368. RYDER,R., NSA, W., HASSIG,S.E. er ul. (1988) Perinatal transmission of the HIV Type I to infants of seropositive women in Zaire, N m EnglandJournal of Medicine, 320, pp. 1637-1642. S c o n , G.B., FISCHL, M.A., KLIMAS, N. er a/. (1985) Mothers of infants with the acquired immunodeficiency syndrome Evidence for both symptomtic and asymptomatic carriers, Journal of the Amm'can Medical Association, 253, pp. 363-366. SHERR, L. (1987) The impact of AIDS in obstetrics on obstetric staff, Journal of Reproducriwe and In/anr Psychology, 5 , pp. 87-96. STEVENS,A., V I ~ O RC., , SHERR,L. & BEARD,R. (1989) The impact of antenatal HIV testing on women, AIDS Care, 1, pp. 165-171. THOMAS, J., BOWEN-SWKINS,P., STEWART,G. & PATIERSON,T. (1989) Survey of anitudes to testing for human immunodeficiency virus infection in ante-natal clinics in West Glamorgan, Erirish Journal of Obrrem'cs and Gynecology, 96, pp. 1405-1409. TONES, K., TILFORD, S. & ROBINSON, Y. (1990)Healrh Education Egectiweness and Eficiency (London, Chapman & Hall). K.D. & ZUIDEMA, L.J. (1989) Determination of the seroprevalence of HIV infection in Gravidas by WENSTROM, non-anonymous versus anonymous testing, Obrrem'cr and Gynecology, 74, pp. 558-561. WORLDHWLTH ORGANISATION (1990) The global AIDS situation updated, Infomarion Sheer No. 68, June 1990.
AIDS Care: Psychological and Sociomedical Aspects of AIDS/HIV Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/caic20
The impact and use of written leaflets as a counselling alternative in mass antenatal HIV screening a
L. Sherr & B. Hedge
a
a
Department of Clinical Psychology , St Mary's Hospital , Praed Street, London, NW2, UK Published online: 25 Sep 2007.
To cite this article: L. Sherr & B. Hedge (1990) The impact and use of written leaflets as a counselling alternative in mass antenatal HIV screening, AIDS Care: Psychological and Socio-medical Aspects of AIDS/HIV, 2:3, 235-245, DOI: 10.1080/09540129008257736 To link to this article: http://dx.doi.org/10.1080/09540129008257736
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AIDS CARE, VOL. 2, NO.3,1990
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The impact and use of written leaflets as a counselling alternative in mass antenatal HIV screening L. SHERR & B. HEDGE Downloaded by [University of Sydney] at 16:51 02 May 2015
Department of Clinical Psychology, St Mary’s Hospital, Raed Street, London NW2, UK
Abstract Re-test counselling has been seen as a pre-requisite for HIV screening. As HIV moves into the heterosexual community, the role of HIV screening in ante-natal care has increased. As vertical transmission is the major conm’butor to pm‘natal infection HIV screening of pregnant women has become a reality. The pregnant population comprises large numbers, the practical dimulties of routine pre-test counselling and the informational demand from pregnant women themselves has necessitated the provision of ante-natal leaflets about HIV infection and AIDS. A sumey of 24 London hospitals revealed only three leaflets in use, two fiom one hospital and one from an AIDS Charity. A content evaluation of the leaflets revealed varying readability, elements of bias and presentation factors which may all aflect the usefilness of such leaflets. An in depth qualitative group on the leaflet with highest readability revealed particular concems and highlighted the fact that the leaflets could be seem as additions and addendums to counselling but were not sufiient in themselves. Introduction
As the widespread use of HIV screening expands, the financial cost and resource limitations of pre- and post-test counselling become a serious issue. This is difficult to resolve given the high psychological cost of an HIV test on an individual and the proven benefits of pre- and post-test counselling (Miller & Pinching, 1989). In many centres (MMWR, 1990) counselling is incorporated into the provision of HIV screening, yet in others, particularly high volume testing in low prevalence areas, counselling has been overlooked, abandoned or substituted with a more mass approach, such as written leaflets, displayed posters, or group approaches. The psychological, financial and medical efficacy of this is unclear. This paper examines the role of ante-natal HIV screening in the light of counselling demands, alternatives and their availability in London. Centres world wide have embarked on ante-natal HIV testing (Medbo, 1989, Novick, 1989; Hoff et al., 1988). Very few include standard pre-test counselling (Wenstrom, 1989; Johnston el al., 1989) although pre- and post-test counselling are taken with other client groups as prerequisite in HIV testing (Miller, 1987; Green, 1989; WHO, 1988; CDC, 1990). At some centres where mass screening is inevitable-such as blood banks-written forms of Address for correspondence: Lorraine Sberr, Deparunent of Clinical Psychology, St Mary’s Hospital, Praed Street, London W2 INY.
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236 L. SHERR & B. HEDGE information have been provided. The efficacy and adequacy of these have not been rigorously tested. However those donating blood do differ from other patients in that they are well, and are attending voluntarily. Ante-natal HIV testing differs in that these are clients attending for their well being and for monitoring of their unborn child. They are exposed to a wide range of screening-some of which in itself is open to question (Chalmers, 1989; Marteau 1989). They comprise a unique population and although they are clearly indicative of sexually active people (by virtue of their pregnancy) they may differ from the heterosexual population at large as they are practicing unsafe sex in order to conceive, they may be more likely to be in a stable relationship and they represent only the female part of the heterosexual couple. Thus the extent to which any data gleaned from this population can be used to predict behaviour in the general heterosexual population at large is limited. There may be some psychological cost linked with HIV testing (Stevens et al., 1989) despite the fact that women may want such a test to be available on offer (Howard et al., 1989; Thomas et al., 1989). The use of HIV testing in pregnancy has many pitfalls and limitations. The HIV antibody test is a limited diagnostic tool. It can detect antibodies to the Human Immuno Deficiency Virus (HIV) and thereby indicate whether an individual has been exposed to the virus associated with Acquired Immune Deficiency Syndrome (AIDS). As an imperfect tool the test cannot tell whether or when an individual will progress to AIDS. It gives no indication of disease state nor time of infection. The test cannot identify how an individual was infected. Antibodies to HIV can take up to 12 weeks to appear. Thus immediately after infection, and at a time when an individual is probably highly infective, a negative HIV test result is possible, even highly likely. The test cannot tell whether the virus will be transmitted to the fetus. HIV testing carries with it an enormous emotional cost, unlike any other screening test. As such testing ought not to be taken lightly (Miller & Pinching, 1989). Some workers (Fox et ul., 1987) have reported that negative tests may be used as ‘permission’ to continue risky behaviour. This is a counter productive use of the test. Severe psychological distress has been associated with HIV testing (Miller & Green, 1986; Miller et al., 1986; Green & McCreaner, 1989; Stevens et ul., 1989). This problem has been widely noted and hence it has become standard good practice not to offer HIV screening without considerable pre- and post-test counselling Bayer, 1989). The arguments for the provision of HIV testing relate to the fact that trans-placental spread of HIV is possible and, indeed, may account for the majority of infant infections globally. HIV can cross the placenta and infect an unborn foetus with various degrees of vertical transmission ranging from 0 to 65% (Friedland, 1987; Scott et al., 1985; Minkoff et af., 1987) in early studies and closer to 25% in later studies which were prospective and better controlled (European Collaborative Study 1988). This prognosis deteriorates if the mother is symptomatic or has given birth to a baby previously who has suffered from AIDS. This raises many challenges in obstetric and paediatric care. The presence of HIV in pregnancy may have profound implications for management, decision making, and pregnancy outcome. HIV testing can be carried out for a number of reasons: 1 . Epidemiological surveys 2. At the request of the mother 3. At the request of the health care provider.
Decisions to screen for HIV will depend on multiple factors. In regions of high background infection, the decision may be different from areas of low infectivity. Personal risk behaviours in the individual may also be indicators. These include sharing needles in
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intravenous drug use, having a partner identified with higher risk behaviour, emanating from an HIV endemic area, or being the partner of an individual infected by HIV. Testing for the convenience of health care workers should be discouraged. There is no cure for HIV and thus the medical solutions are limited. HIV often arouses extreme reactions in families and medical practitioners alike. Any screening which may result in staff being unwilling to treat a woman is not in the best interest of the woman and ought to be discouraged. Good standards of infection control for all patients and education ought to replace such policies (Brierly, 1989). Screening for epidemiological reasons and sero-prevelance surveys raises other concerns. It is generally accepted that sero-prevelance data is necessary for service planning. Although this may justify anonymous screening, these ideas need careful thought. The costs of such studies need to include provision, not only for testing and laboratory analysis but also for remedying or rectifying psychological harm and anxiety which may surround such screening. Such studies should be time limited and should only continue while meaningful and useful data is gathered. Often such goals and aims are not clearly thought through and sero-prevelance studies are continued beyond a useful period. Pregnant women have been the focus of world-wide sero-prevelance studies. Large numbers of pregnant and parturent mothers have been subjected to HIV screening-Ryder et al. (1988) 8,108; Medbo et al. (1989) 165,000; Ippolito et al. (1990) 39,102; Hoff et al. (1988) 30,708; Kantanen et al. (1988) 9,202; Nsa et al. (1989) 12311, Nzilambi er al. (1989) 7,000. Few studies to date have reported any parallel pre- and post-test councelling with this group-unlike Wenstrom (1989) and Johnston et al. (1989). Either it is simply ommitted, or the failure to report it reflects the fact that this group is seen as less deserving of psychological support than other groups. T l s would be a sad situation given the fact that pregnant women may be a vulnerable and disadvantaged group in society. They enter medical care with an element of trust and abdication of control (Reid, 1980). Fears of the unknown and concern for the safety of their baby may be overriding decisive tools to encourage women to agree to a wide range of testing. In various situations they may not be a good sample to reflect general heterosexual infection. If testing is truly in the pregnant woman’s interest it is unclear what are the optimum times for testing. Indeed continuous testing may be more effective given that pregnant women invariably continue to have sexual relationships during a pregnancy and these tend, on the whole, to be unprotected. There are no studies of HIV sero-prevelance testing being carried out on the partners of such women. At times seroprevalence studles may duplicate data. For example the UK government launched a seroprevalence study on January 16th 1990 in pregnant women, despite the fact that Peckham er al. (1989) reported comprehensively on PKU testing in inner and outer London on 115,000 samples which gave high level data and strong recommendations for the very sample to be subsequently tested. The cost of HIV pre- and post-test counselling could be formidable given the high number of pregnant women. Alternatives have been suggested not only to provide information but to ensure truly informed consent and to obviate the needs for full time counsellors in such clinics. Written information has been used in many clinical settings to supplement, substitute or reinforce verbal communications. Written material has many advantages (Ley, 1989). Its construction can be done out of the clinical encounter, thus allowing time and effort to present a more carefully thought out and formulated piece. In addition it is endorsed by patients who universally seem to respond positively to written information and state that they desire it (Morris & Groft, 1982). Yet the efficacy of such material must depend on the standard of the content, the extent to which it is noticed, read, comprehended, recalled and believed.
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238 L. SHERR & B. HEDGE Research evaluations of these factors are varied. Many workers have documented high proportions of patients reading written material: 49-95% Ley (1988) 72% Kanouse er al. (1 981). Furthermore workers have reported that patients subsequently keep such information for future reference. Ley (1989) reviewed the literature on the understandability of such written material and found that the majority of written documents would not be understood by over two thirds of the general population. He concluded that “a considerable amount of written material for patients is of too high a difficulty level”. Furthermore, forgetting rates are high; compounded if leaflets were difficult to read or understand. A series of intervention studies have shown that written information could be improved with overall simplification. Such attempts not only enhanced readability, but improved the majority of outcome measures when these were taken: accuracy of medicine taking (Ley et al., 1975) and weight loss (Ley, 1978). Ley (1988) reviewed seven studies with 13 effect comparisons and found 10 to show significant increases in recall with simplification. In the light of such literature it seems necessary to examine the efficacy of any such written material for AIDS/HIV and pregnancy, to examine the extent to which it is available and how it is perceived by providers of care and those in receipt of leaflets. It is important to clarify whether written material can substitute counselling and whether it is used as an alternative in some clinics. This study examines:1. The availability and usefulness of written material about HIV testing in antenatal clinics in London, UK. 2. The impact of such material on pregnant women. 1 Availability and usefulness of written material
Method A survey of 24 London Hospitals revealed three leaflets explaining the implications of HIV infection for pregnant women currently in use at antenatal clinics. The majority of hospitals had no written information available. Of those who had such information three leaflets were identified. Two leaflets emanated from one hospital (a centre of high numbers of HIV and AIDS cases-Leaflet A and B). The other leaflet was one published by an AIDS charity set up to provide information and education in the UK (Leaflet C). This latter leaflet was reported by all those hospitals who had any information. All leaflets appeared only in an English Language ehtion. A detailed analysis of the three leaflets was carried out. Specifically the information presented was assessed for factual errors and omissions, readability, presentation and bias towards or against maternal testing for HIV infection. (i) Factual errors and omissions. The leaflets were scanned by two experts working within the field of HIV for errors which may limit the usefulness of such leaflets and misguide readers. Errors were judged to have occured when both judges, independently reported a statement to be incorrect and where referenced substantiation to the correct facts was obtainable. Omissions were judged to have been made when both judges independently reported a fact to be necessary for the understanding of HIV within the context of an antenatal clinic, which was not covered by the written information.
(ii) Readability. The three leaflets were analysed for readability according to the Flesch
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Formula. This formula gives an ease of readability score which can be taken as an indication of the number of people who could easily read the piece and gives an estimate of the IQ needed to understand its contents. The leaflets were analysed as a whole and by information themes. The Flesch Formula has been used extensively (Ley, 1988). Higher readability correlates with outcome variables such as readiness to read a piece, ability to recall it, satisfaction and understanding.
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(iii) Resentarion. Presentation of the leaflets was assessed using a pre-set schedule. All three leaflets were scored with respect to visual impact, type quality, colour, contrast and graphics. (iv) Bias. The leaflets were given to a group of 15 female coders, working blind, to rate bias of the leaflets. Coders were asked to record their impression of the leaflets as to whether they were pro-testing, $gainst testing, or neutral. (v) Posuiwe aspects of the leajets. The same experts were asked to note the positive aspects of each leaflet, and the advantages of such material.
Results (i) Factual errurs and omissions. All three leaflets were found to contain some errors and omissions. Readability gives no indication of these but scanning by two experts working in AIDS revealed errors which may limit the usefulness of such leaflets and misguide readers. Errors and ommissions included: misuse of terms HIV and AIDS. These terms were often used interchangeably. Reference was made to the ‘AIDS Test’. There is no AIDS test available; the test is essentially an HIV test. Confusing messages were presented about disease progression and misleading suggestions were provided concerning appropriate treatment. These revolved around vague statements about the doctor being able to provide care. The .total inaccuracies and ommission scores for each leaflet were: Leaflet A Leaflet B Leaflet C
9 7 3
(ii) Readubility. Table 1 below sets out the readability scores for the three leaflets. It can be seen that the second hospital leaflet and leaflet C were the highest in terms of readability. 75% of the population could be expected to understand these leaflets. A number of common themes emerged from the leaflets. Table 2 below sets out the extent to which the leaflets contain these themes and the readability of passages within each leaflet. The readability ranged from 24%-86% of the population being able to understand specific passages. It is noticeable that leaflet A contained less information than leaflets B and C and the lowest readability scores (24%) were obtained for passages in Leaflet A. It can also be seen that B and C were not consistent in the passages which rated low on readability.
240 L. SHERR & B. HEDGE Table 1. Readabtluy scores /or three pregnancy and HIV leapers according 10 the Fierch Formula Leaflet B
A
725 37
Number of words Number of sentences Readability Score % Populatioa who understand 1Q necessary
53.3
40 104
-
919 48 65.3
-13
90 +
C 1409 91 65.2 75 90 +
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Table 2. Common themes and their readabiliry % Population who should understand
A Introduction Pre-prcg Testing Advisability of Test Should everyone have test What is HIV Test Disadvantages of Test Possible effects on Baby More Information Risks/How Infected What does + ve Test Mean What does - ve Test Mean Termination Birth Breast Feeding
B
C
90 75 55 80 40 40 75
80
-I>
21 24 40
75 55
no
--
13
86 40
75 75 80 75 40 64 -
-I3
40
-I3
(iii) Presentation. Table 3 below indicates how different the presentation of the three leaflets is. (iv) Bias. Figure 1 below sets out the results. Leaflet B was seen as most unbiased. A constant 25% rated leaflets to be biased towards testing. (v) Positioe aspects. The existence of the leaflets were seen as an overall positive step. It was felt that the presence of the l e d e t would allow women permission to address this subject. The provision of written information was seen as favourable. This would allow for easy access to factual information which women could take home with them for further reference. AIDS and HIV often receives lugh press profile and accurate information may be an antidote for anxiety or concerns. It may also help women to understand their own risks. 2. Impact
Given the previous analysis, the leaflet with lughest readability (Leaflet B) was subjected to a qualitative group analysis. A small group of recently delivered mothers comprised this
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Table 3. Resentation of leapers A
B
C
size
4 pages
4 pages
6 pages
TYK
Typed White with black print
Pnnted
Printed
White with black print & red relief
iMultl colour
Pictures. .Multi-culture images. teddy bears, passive women, male health carer Professional Caring
FACTOR
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Colour
Graphics
No pictures
No pictures
Visual impact
Amateur
Professional Alerting
Borlng
soft pastels
80-
fE 0
-
: F
-6 c
0
Agarnst
60-
II
-8
Towards
w Unbiased
.
40-
-
-3 20-z
a ? -
0-
Hospital 1
Hospital 2
AVERT
Figure 1. Testing bias in the three leafleu.
qualitative group. They were used as they could identify with the issues but as antenatal tests were not now relevant to them they could have a meaningful discussion without antenatal HIV testing being something they would be faced with.
Method A group of nine women were gathered. They were instructed to read the leaflet for a group discussion. They were told that their own personal opinions were sought and guaranteed anonymous and confidential.
Results The themes that emerged from the discussion were as follows:
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L. SHERR & 8. HEDGE
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(i) Impact. They indeed found the passages that had previously revealed low Flesch Formula scores difficult to read which resulted in confusion and in loss of interest. They showed concern about passages giving incomplete information. Omissions were frustrating for the readers and increased anxiety. The mere presence of the leaflet was seen as advocating testing. They felt that procedural information was lacking. This related to items such as when was a termination safe, when was testing advised, how long before results, what were the implications? They endorsed sub-headings which enhanced readability and comprehension.
(ii) Acceptability. The group spent a large amount of time discussing acceptability. They were concerned about distribution of the leaflet. They suggested three possible methods and commented thereon. The first option which is commonly used in ante-natal care is the use of postage whereby the leaflet was sent to all women. The group members felt that leaflets should not be mailed. Subjects may misguidedly feel that the posted leaflet was meant as a personal message. On the other hand, if a subject received such a document in the post it may raise initial concerns which could not be immediately addressed as they had no direct access to a counsellor or health care worker. This point was emphatically endorsed by all participants. It is important to note that many of the leaflets are mailed as a matter of routine in antenatal care. The second option commonly in use with other material is to allow for a self service selection from available racks in waiting areas or clinic entrances. This removed personalising the leaflet but all subjects felt the social stigma attached to AIDS may discourage anyone from talung a leaflet off the rack in a public place. The third option was a private and personalised avenue where it was given as part of a wider standard information package. This was the most agreeable form resolved by the group. They felt that people would not feel singled out but could raise questions with the individual who had given them the data. They also felt that written information needed time to absorb and subjects may want follow-up and discussion opportunities at a later date. Subjects in the group perceived a pro-testing bias. All subjects found that the leaflet created an information need rather than resolving queries on this sensitive subject. (iii) Counselling a l m a t i v e . The group thought the leaflet served as a means of opening a discussion but in no way substituted pre-test counselling. They felt the leaflet could be used to help staff who may want to avoid missing out bits of information if the counselling was repetitive. They also felt it was a good idea for women to have something in written form to take away with them. The issue of testing was stressful and this may result in women missing out questions or having reduced recall. Some of the items raised concerns with the women who previously held unclear information. They found some of the facts somewhat frightening. The voiced worries about attitudes staff may hold towards them if they discussed risk behaviours. They were also unsure about the extent to which staff would be proficient at dealing with delicate sexual concerns.
Discussion It appears that the amount of information avadable in antenatal clinics in London is limited. Only one hospital had generated its own personal information package. The other leaflet was
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not a Government or health education leaflet, but the result of an individual charity which identified this need. Leaflet construction is always difficult. Errors can create misconceptions which could be counterproductive and create more harm than they address. The leaflets which do exist contained a number of factual errors and omissions. Particular difficulties were encountered when the question of medical uncertainties arose. For example, the subject of breast feeding was either omitted or dealt with in very vague terms. This is an important issue and needs to be handled carefully, giving clear advice and reporting on the limited data with their ambiguous messages on which this advice is based. The readability of leaflets is variable. The earliest attempts (A) was poor. This leaflet was piloted and revamped (B). It emerged much improved from this procedure. Readability, it must be remembered, gives no indication of content and accuracy. Although an overall mean readability score which indicates that 75% of the population can be expected to understand is a high score relative to other medical documents (Ley, 1977) it is of some concern that 25% of the population would be missed. This, of course, does not take into account those who are unable to read and those who cannot understand English. The presentation of the leaflets is important; an unattractive leaflet is unlikely to be picked up or read. Even the most accurate and readable leaflet is impotent if not consulted. There is a whole body of literature on health education and health marketing (e.g. Tones 1989) which shows the necessity for good format in health promotion literature. It is of no less importance here. Although leaflets should provide objective data to facilitate decision making or simply to inform-it is difficult to construct bias free leaflets. Such bias was certainly perceived by observers with these examples. The leaflets that exist need to consider their aims and impact prior to use. As a basic pre-requisite readability needs to be consistantly high. Simple piloting is easy to mount and should be routinely adopted prior to launching. In many countries the initial reaction to AIDS and HIV informational needs has been the creation of leaflets. Although leaflets do have a place in health education, this is limited. The content and level of the l e d e t is an immediate limitation. Bias, perceived reasons behind the leaflet and availability and accessability may all detract from the usefulness of such tools. They may meet a need and play a central role in information addition, but they may not be able to replace counselling. Furthermore with a sensitive topic to a vulnerable group they may be an addendum but not suffice in their entirity. If the leaflets serve to raise the topic of AIDS it is important that the staff to whom pregnant women turn are competent and skilled in HIV counselling. Sherr (1987) has shown that staff often lack fundamental knowledge about HIV infection. Counselling skills are a specialised area of expertise and many obstetric workers may have highly specialised skills in their own field, but have limited training and practice in counselling. The use of small qualitative groups has its limitations in that their views may not necessarily represent those of the whole group. More intense research is needed to evaluate group attitudes as a whole. However, in depth discussion can provide an insight into the kinds of problems, solutions and obstacles that may be of potential concern to this client group. This study may also serve to highlight the importance of pre-testing of material or approaches. This can be done in a relatively small scale manner with a limited number of women, but may be crucial to ensure that the aims and goals of written material are focussed to meet the needs of the client group and are constructed in ways which will best assure that they are achieved. Leaflets are not solution to AIDS and HIV counselling. They form one small component and run the risk of creating needs and anxiety rather than resolving these.
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