I want to be like the others - Waverley Care

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77I want to be like the otherspractice in minimising vertical (mother to child) transmission of HIV. 4 More recently, ithas turned its attention to new areas, as well as maintaining its original interest inpregnancy and childbirth. Writing in 2002, Thorne et al highlight the increase innumbers of perinatally infected children who now survive into adulthood; althoughthis trend had been seen before the widespread use of highly active antiretroviraltherapy (HAART), earlier and increasing use of HAART has allowed survival rates toimprove further (Thorne et al, 2002). ECS publications from 2003 onwardsdemonstrate extensive research into the consequences of the use of HAART inpregnancy on infected and uninfected children, as well as examining a range of otherissues, including possible gender, race and age differences, East-West differencesacross Europe, and the additional impact of co-infection (Hepatitis B or Hepatitis C)on pregnant women with HIV.Research evidence from the Collaborative HIV Paediatric Study and National Studyof HIV in Pregnancy and Childhood provide support for the epidemiological findingsof the ECS. Gibb et al (2003) identify reductions of 80% in mortality and 50% inprogression to AIDS amongst children perinatally infected with HIV in the UK andIreland between 1997 and 2002. The authors also note an 80% decrease in hospitaladmission rates, although they go on to point out that the actual number ofadmissions decreased by only 25%, suggesting that the increasing number of HIVinfected children requiring care has implications for services in the UK and Ireland.Judd et al (2006) similarly report on 10 years of paediatric care for children infectedperinatally from 1996 to 2006. Judd et al state that the characteristics of this group ofchildren have changed in recent years. Many children now present with HIV at anolder age, and a large proportion are coming from abroad; this picture is also said tobe found in other European countries. The numbers of children with new diagnosesand children receiving care continue to increase each year, and most new arrivalshave not previously received antiretroviral treatment. Looking ahead, Judd et alpredict that more children will be presenting who have been taking simple, fixed-dosecombinations of generic drugs, and more children may have resistance to drugs.More encouragingly, they note that initial decreases in overall rates of progression toAIDS and death after the introduction of HAART in 1997 have been sustained, withfurther decreases between 2002 and 2006. One of the repercussions of this is that4 Historically, the vast majority of HIV infections in children were due to vertical (mother tochild) transmission; children acquired HIV from their mothers during pregnancy, around thetime of birth or through breast feeding.
I want to be like the othershospital admission rates have continued to decline, and care has shifted frompaediatric wards to outpatient clinics. There has also, they note, been an increase ingeographical dispersal within the UK of families from countries where the prevalenceof HIV is high. This observation has particular relevance to the current needsassessment of children and HIV in Scotland.Recent research has explored the potentially negative, as well as positive, effects ofHAART. Studies show that increased survival has brought additional implications forinfected children and their families. Not only are infected children now living with achronic childhood illness, but interventions to reduce the risk of mother-to-childtransmission may have long-term adverse physical effects, in particular for uninfectedchildren who were exposed to antiretroviral therapy in utero or early in life.Considerable research has been undertaken in recent years which seeks to assessthe neurological and developmental effects of HAART (for example, ECSpublications, Chiriboga et al, 2005; Foster et al, 2006; and Shanbhag et al, 2005). Arecent survey confirms there is widespread unease amongst parents and healthprofessionals about the impact of HAART. Almost all 180 respondents in Hankin etal’s (2007) survey said that they were anxious about the possible side-effects fromexposure to HAART on children. This survey also asked parents and professionalsabout disclosure in relation to possible health risks; who were thought to be the bestpeople to tell children about any health risks. Interestingly, almost three quarters ofthe parents surveyed (n=102) felt that they should be the ones to tell their children ofany health risks, even when the child had grown up.Parents’ disquiet about who should tell their children about potential side-effects ofHAART is, of course, wholly connected with their more general fear of telling themabout HIV. Much of the early, practice-based literature on HIV focused on this,examining when and how parents should disclose their HIV status to their children(for example, McClory, 1996; Melvin, 1997). HIV was, and remains, a highlystigmatised and stimatising illness (c.f. Sontag, 1988; Malcolm et al, 1998; Green andSobo, 2000; Carlisle, 2001; Cree et al, 2004b). An Ipsos MORI survey of youngpeople aged between 14 and 25 found high levels of stigma (and, indeed, ignorance)around HIV. Although 84% of the British young people who took part in the surveysaid that they would remain friends with someone with HIV, 45% said they would notbuy food from a shopkeeper who has HIV, and only 32% said they were willing toreceive treatment from a doctor who has HIV (British Red Cross, 2007). A recentinvestigation of the needs of HIV infected ‘looked after’ children in the UK suggests88
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