Katie Rowson

Research Nurse – MRC Clinical Trials Unit at UCLLecturer in Children’s Nursing - UCLan

� Consider Adherence in AALPHI cohort (thanks to Dr Ali Judd)

� Review reasons for adherence and non-adherence in practice� Consider the positive and negative

experiences impacting on adherence in a case study (thanks to Young Person involved)

� Discuss what is important to Young People so that practice can be optimised(Thanks to Amanda Ely, Abi Carter, Youth Guidelines Group –Treat me like this and CYC)

� 296 pHIV adolescents aged 13-21 interviewed in 2013-2014

� Adherence data collected through CASI to minimise bias

Overall:

� 88% (261) took ART at the time of interview

� 94% of these are on a once daily regimen

I use reminders…I find it difficult to take….

Most popular:Family 73%Pill box 20%Timer 20%Daily routine 10%*Text message 7%Friend 7%

* Eg breakfast time/ TV show

0%

10%

20%

30%

40%

50%

60%

Weekday dosesWeekend doses Reminders

%

Missed doses

0%

5%

10%

15%

20%

25%

30%

35%

Missed

today

Missed

yesterday

Missed day

before

Missed any

in last 3

days

Missed >2

days in a

row in last

month

%

Main reasons for missing ART:Forgot

68%Away from home 37%Asleep

30%Too tired 29%Didn’t want others to know

23%Couldn’t deal with it that day 24%School time 23%Ran out 15%

Self-reported adherence

0%

10%

20%

30%

40%

50%

60%

70%

Excellent Good Not so good Bad

%

Overall

No missed doses in last 3

days

I’ve haven’t

missed any ...They make me

ill ..... No

chance I'm

taking ‘em...

Their under lock

‘n’ key at my

house

Not weekends

I’m fine without my meds

� Taste, Size, Frequency and Amount of tablets or liquids

� Beliefs, Culture, Religion

� Past experience

� Family Life, Support, Role Model

� Routine, Stress

� Young carer

� Exams

� Social Life, want to be “normal”, weekends, alcohol, recreational drugs

� Don’t feel unwell

� Reminder of diagnosis

� Understanding of diagnosis and medication

� Side Effects

� Knowledge / education

� Commitment

�Motivation

�Mental health

� Support

� Previous adherence or adherence to other medication

� Travel to clinic

�Other challenges or priorities

� Relationship with health care team

� Calendars

� Alarms

� Texts

� Parent / carer

� Routine e.g. brushing teeth

� Labelling syringes

� Home Support

� Direct Observational Therapy by family member

� Education / knowledge of diagnosis / Understanding

� Support groups / 1-to-1

� Knowing someone cares

� Don’t want to have the psychological side effects

� The medication can affect your mental health� Your dreams are very vivid � You get fed up with the routine

� We wish there was an easier option like an injection

� When you get told late – you feel the medication is associated with the SECRET

� One person whose parents had died wanted to stop meds to be nearer to them

� When you see someone die from not taking medicine it motivates you to take it

� If someone doesn’t take there meds there is always a reason – talking to someone helps you get to the root of the problem

�Why is my adherence so good – I don’t associate it with my HIV, I just think about continuing my life

� Born in Zimbabwe

� Lived with Aunty and extended family from 2 years of age

� Mum moved to UK Dad had passed away

� 5 years of age

� Leona, our maid, would give me medicines in the morning with porridge and a night time with biscuits

� This was part of her job but she cared about me

� Lots of small tablets – easy!

� Sometimes received prizes such as a teddy bear

� 3 monthly Clinic Appointments

� Lots of hospital stays – remember drips

� Friends asked why I skipped school for clinic

� Told at school not to get HIV – medicines are very expensive, you can give it to other people, you will die

� “I remember someone with HIV in our town –nobody spoke to her or her children”

� Leona, the maid, moves out and the daily routine disappears

� Occasionally I’m reminded to drink my pills

� I notice my cousin takes tablets when he is sick (but not all the time) – that seemed easy enough!

� “at clinic I would be asked if I was ok and given new medicines; we was paying so they were never checked”

� Moved away

� Very strict

� Met new friends

� Learned how to cook eggs on an iron!

� Medicines kept with a lecturer in her house

� Continued to take them when I felt ill, could just go and get them

Challenges You’re HIV Positive

� I don’t have a relationship with my Mum

� I don’t want to leave my friends and family

� Why am I taking these pills?

�Tablets

too big

here

Hate

these

tablets

When will

it end?

Hard frustrated

Why me?

Forever?

� I’m studying fashion and design and will go on to do a Masters at uni

� I will travel the world

� I will be a fashion designer

� I will drive a car

� Arun, S. Singh, A.J. Lodha, R. & Kabra, S.K. (2009) Disclosure of the HIV infetion Status in Children Indian Journal of Pediatrics vol. 76 805- 807

� Biadagilign, S. Deribew, A. Amberbir, A. Escudero, H.R. & Deribe, K. (2011) Fatorsassociated with HIV/AIDS Diagnostic Disclosure to HIV infected children RecieveingHAART: A multi-center study in Addis Ababa, Ethiopia PLosONE Vol. 6 Issue 3

� Bikaako-Kajura, W. Luyirika, E. Purcell, D.W. Downing, J. Kaharuza, F. Mermin, J. Malamba, S. Bunnell, R. (2006) Disclosure of HIV Status and Adherence to Daily Drug Regimens Among HIV-infected Children in Uganda AIDS Behaviour Vol. 10 S85-S93

� Calabrese, S.K. Martin, S. Wolters, P.L. Toledo-Tamula, M.A. Brennan, T.L & Wood, L.V. (2012) Diagnosis disclosure, medication hiding, and medical functioning among perinatally infected, HIV-positive children and adolescents AIDS Care Vol. 24 1092-1096

� Lowenthal, E.D. Jibril, H.B. Sechele, M.L. Mathuba, K. Tshume, O. & Anabwani, G.N. (2014) Disclosure of HIV status to HIV-infected children in a large African treatment center: Lessons learned from Botswana Children and Youth Services Review 45 143-149

� Merzel, C. VanDevanter, N. & Irvine, M. (2008) Adhrence to Antiretroviral Therapy among older Children and Adolescents with HIV: A qualitative study of Psychosocial Contexts AIDS Patient Care and STDs Vol. 22 977-987

� Pinzon-Iregui, M. Beck-Sague, C.M. & Malow, R.M. (2012) Disclosure of Their HIV Status to Infected Children: A Review of the literature Journal of Tropical Pediatrics Vol. 59 No.2 84-89

� Naming HIV at a younger age is so important; why would you take medication if you didn’t know what it was for and how to take it?

� Get to know individuals

� It takes time and honesty to develop trust

� Understand and think about being young

� HIV may not be my biggest challenge

� Let people know who can help

� When my doctor gets angry with me if I miss a dose – it is really stressful, telling me I am going to die…..� I will lie a bit about how many doses I have missed. I

have had to because I feel under pressure from my doctor� They need to put themselves in my shoes� They don’t really appreciate how difficult it is to take

medicine every single day� When I take my tablets it's the only time I really think

about HIV� When my doctor asks me if I have any questions I

always say “no” even though I have loads

� Making young people aware of the consequences of not taking medication is important, but you should avoid using fear, threats, and applying pressure.

� Understand the lifestyle experiences of young people. This does not necessarily fit with what is being expected of them in terms of their medication regime. Aim to work collaboratively with the young person to establish a regime that is manageable for them in relation to their lifestyle.

� Provide a letter with the medication which explains what possible side effects the young person should look out for. Provide help to the young person with monitoring any side effects experienced. For example a chart which the young person can fill in if they experience side effects.

� Make it clear to the young person that they can ask about changing their medicine if they experience side effects.

� It is very important to understand that taking medication can be emotional for many young people- “it is not just taking a pill’. It is critical to convey empathy and appreciate the challenges of HIV medication adherence.