HIV+ children and young people have complex family and health contexts: results from a case note review in a London treatment centre. Tomás Campbell, Hannah Beer, Precious Legemah, Mbalu Saine & Jayne Griffiths Newham Psychological Services, London, UK Email: Tomas.campbell@newhampct.nhs.uk

HIV+ children in London Most HIV+ children in London are of African origin and acquired HIV vertically. African families in London face many challenges in addition to coping with HIV disease including: Immigration concerns Integration into a new social and educational system Housing and financial concerns Racism and discrimination

Factors which affect coping with HIV Research evidence and clinical experience suggest that effective coping is facilitated by: Social support for families Good parental mental health Effective parental strategies to cope with disclosure of HIV Consistent engagement with clinical services Poorer coping is influenced by: Presence of multiple challenges e.g. ill-health, immigration and financial concerns, multiple losses Social isolation and poor access to social support Parental difficulties in managing their own HIV+ status Poorer parental physical and mental health

Why is effective coping important? In addition to the usual complexities of family life African families with HIV in the UK have to respond to additional challenges: Taking ARV medication effectively in the long-term (parents and child(ren)) Being able to disclose to their child(ren) Manage their concerns about HIV confidentiality and fears about stigma Seek appropriate social and emotional support

Family focused treatment The London based Sun Clinic is a family centred HIV treatment centre which provides integrated and multi-disciplinary care (medicine, nursing, psychology, pharmacy) to HIV+ parents and children. This clinic based treatment model has many advantages: Easy access for patients to the multi-disciplinary team at clinic appointments Fewer appointments for patients as parents and child(ren) can be seen within the same clinic An integrated management approach where emphasis is given to families’ social contexts, coping styles and psychological functioning

Background to the case note review This review was conducted to examine the health status and family context of both parents and children attending the Sun Clinic in order to: Better understand their social context Explore parental and child adherence difficulties Identify factors which might indicate better and poorer coping Identify families who might benefit from additional clinical input

Method A pro-forma was developed which addressed: Demographics Family composition Current child health Parental health Disclosure of HIV status (both parental and child) Child protection issues Social support

Results 40/44 psychology and medical records of the index child were examined Missing data was collected through interviews with relevant clinicians (psychologists, medics, nurses)

Demographics 94% of children attending the Sun Clinic were of African origin All were infected vertically Age range was 2-18 years 72% were 12 years and over Length of diagnosis ranged from 2-14 years 42% of children were born in the UK 20% have been in the UK for less than 5 years Most children are British citizens or have the right to remain in the UK (72%)

Family composition 64% children lived with their mother only; 25% of these children had contact with their father/stepfathers There were 53 siblings: 36 siblings living in the UK and 17 siblings lived elsewhere (usually in Africa) The HIV status of 17.5 % of the UK based siblings was unknown The HIV status of 80% the Africa based siblings was unknown 25% of index children had a diagnosed HIV+ sibling (could be an adult sibling) 72.5% of children had other family members living in the UK (other than immediate family) 52% of children had experienced an HIV related death in the family

Current health status of child 72% of children had commenced ARVs 32% had reported adherence difficulties 7% had a diagnosed developmental delay 57% had another medical condition e.g. chronic cough, planar warts, respiratory infection 12.5% had another disability e.g. deafness, spasticity

Parental health 10.5% of parents had adherence difficulties 18% had had physical health hospital admissions in the previous 18 months 39% had mental health difficulties of whom 47% were receiving psychiatric treatment 40% were employed/in education/training

Disclosure of status to index child 67% of children were aware of their status and had been disclosed to between the ages of 11-13 years 48% of these families had been referred to psychology for assistance with the disclosure The 30% who had not been disclosed to were aged 3-14 years (majority under 9 years) 25% had not been disclosed to about their parents’/carers’ status

Child protection issues Child protection issues were identified in 25% of index children Neglect, poor/non-adherence, domestic violence and parental abandonment were the main issues of concern 12.5% of index children have been on the child protection register

Social support 65% of index children accessed community based support services 62.5 % were seen by the psychology service: the most common referral issue was disclosure of status 42% of eligible adolescents have attended transition preparation events (regular events organised by the Sun Clinic)

Conclusions Children and young people live in families where there are complex medical and psychosocial issues Engagement with services is variable and may reflect poorer coping strategies with HIV issues i.e. fewer than half eligible adolescents have attended transition preparation events, high parental concern about disclosure of status Difficulties with ARV adherence and side effects are of concern both in parents and young people HIV associated disability, chronic illness and developmental delay are common in young people

Many parents have difficulties with their physical and mental health Child protection concerns are common Information about fathers is almost absent from the records Experience of HIV related death is common Data about childrens’ social, educational and developmental progress is patchy

Clinical implications Improved clinical protocols, data management and audit systems should be identified and implemented to facilitate early detection of difficulties Increased use of psychological interventions to support adherence, reduce distress and increase coping Additional clinical support for parents and young people to develop coping strategies with regard to challenges of adolescence