1. 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

2. 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

3. 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

4. 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

5. 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

6. 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

7. 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

8. 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)

9. 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%)

10. 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

11. 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

12. 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

13. Disclosure of status to index child
67% of children were aware of their status and had been disclosed to between the ages of 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

14. 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

15. 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)

16. 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

17. 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

18. 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