I want to be like the others - Waverley Care

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I want to be like the others• There are now two distinct groups of children infected with HIV in Scotland:younger children (born abroad) and British-born children who are older; bornbefore routine testing and preventive treatment.• There are special pressures on parts of Scotland in relation to HIV today, withNHS Greater Glasgow & Clyde and NHS Lothian treating the largest number ofHIV infected people and young people.Affected childrenReaching an accurate estimate of children affected by HIV is difficult, because thereis no routine data collection. Using methods first employed by Inglis and Morton(1996), questionnaires were sent to key HIV agencies (statutory and voluntary) inScotland. Overall, 13 agencies provided data about children and young people whomthey knew to be affected by parental HIV, and this figure was used to extrapolate forScotland as a whole. The total number of affected children in Scotland was found tobe around 833. Again, mirroring the findings in relation to infected children, specificissues come to light:• The total number of affected children in Scotland was estimated to be lower thanin 1996: 833 as compared with 911 in 1996.• There has been a shift in pressure on Health Board areas. Tayside today hasmany fewer affected children than in 1996, as does Lothian (though Lothiancontinues to have the second largest number of affected children in Scotland).Greater Glasgow & Clyde has many more affected children than in 1996.• There has been a shift in the age distribution of children, with a much greaternumber of under-5s in both Lothian and Greater Glasgow & Clyde. There are alsomany more older teenagers in Greater Glasgow & Clyde, whilst the number inTayside has fallen. Research suggests that the very young children affected byHIV are largely children of black African mothers, who (it is already known) areliving with severe hardships, economically and socially, as well as with HIV(Crusaid/Waverley Care, 2007).• Most affected children in this survey were not accessing any services in their ownright; but were simply known to exist by the agency which was supporting theirHIV-positive parent/s. Where services were provided, children made use of them;a small number of affected children were known across three or four agencies.vⅰvi
I want to be like the othersQualitative StudyThe study identified a range of stakeholders with knowledge and insight into theneeds of children infected and affected by HIV in Scotland. Those included:• Practitioners from health and voluntary sector HIV agencies• Parents and carers• Children and young people infected with HIV• Children and young people affected by parental HIVIn total, 48 people contributed to the qualitative part of the study: 20 practitionersfrom voluntary sector HIV agencies and NHS services in Edinburgh, Glasgow,Dundee and Aberdeen, as well as 28 adults and children in Edinburgh and Glasgow.Of these, 16 were parents and carers, five were children and young people infectedwith HIV and seven were children and young people affected by parental HIV. Mostinterviews were with individuals or occasionally with two practitioners together. Onegroup interview was also held in Glasgow with parents and carers.Key findings from practitioners• With the exception of health services, HIV agencies in Scotland are focused onadults; where services for children exist, these have to be accessed throughadults first.• All the agencies currently working with children and HIV would like to be able todo more for children. Additionally, two high profile children’s charities (Barnardo’sand Children in Scotland) which had been active in the field of children and HIV inthe past are no longer involved in this area, because of difficulties in funding thiswork.• Agencies work a great deal with others in the field, and with external voluntaryand statutory agencies. However, practitioners noted that inter-agencycollaboration was made difficult by pressures on agencies, particularly healthcareagencies. Concern for confidentiality may also impede collaboration: serviceusers from one agency may not want to be referred to another for specialistsupport due to fear of stigma.• Practitioners identified the importance of offering safe, non-threatening servicesto children infected and affected by HIV, particularly given the stigma whichsurrounds HIV.• They also felt that more needs to be done across-the-board to highlight theissues faced by children in relation to HIV (e.g. in schools and in health boards,especially those with low numbers of infected adults).vⅰivii
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I want to be like the others - Waverley Care

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