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Children & Young People

Children & Young People 1

Issues they may face on first diagnosis

Every child and young person will respond differently to first diagnosis. Their response is often based on their prior experience and knowledge of HIV and whether or not they have lost a close family member to the virus.

There can be a lack of understanding about HIV on first diagnosis which can increase fear and anxiety. In this way, it is essential that children and young people are supported in their comprehensive understanding of HIV. Children and young people need to know that HIV is a manageable condition. It can be helpful for health care professionals to relate HIV to other chronic illnesses to assist in them in this.

Issues children and young people may face on first diagnosis include the following:

  • Shock
  • Anger
  • Loss
  • Fear
  • Worry
  • Concerns and questions with regards to future health and life.
    Am I going to die?
  • Questions around relationships and children. Will I be able to have a boyfriend? Will I be able to have a baby?
  • Questions around how the child or young person contracted HIV. Family support is vital here in enabling children and young people to be informed

Issues regarding sex and relationships

A positive HIV status is considered to be a barrier to sex and relationships for young people. It can add to a normal anxiety for teenagers negotiating this part of their life.

Disclosure
Who do I tell and how?

Fear and Anxiety:
How will my boyfriend / girlfriend react to my HIV?

Shame and Embarrassment:
What will my boyfriend / girlfriend think of me if I tell them I have HIV?

Confidentiality and Extended Disclosure:
If I disclose will my boyfriend / girlfriend keep my status confidential?
If we break up will he keep it to him / her self?

Contraception and Condom Use:
Positive young people need to be aware of the legalities around the responsible use of condoms during sex and of cases where positive people have been prosecuted as a result of having unprotected sex whilst knowing that they are HIV positive.

Peer and / or partner pressure to have sex

The need for HIV specific sex and relationship education for positive children and young people

Issues regarding friendships

Issues regarding friendships

Disclosure:
Who do I tell and how? Do my friends need to know?

Fear and Anxiety:
How will my friends react to my HIV?

Shame and Embarrassment:
What will friend(s) think of me if I tell them I have HIV?

Confidentiality and Extended Disclosure:
If I disclose will my friend(s) keep my status confidential?
If we fall out will they use it against me?

Secrecy and the weight of this for children and young people:
It’s a part of me that I keep to myself.

Managing Medication:
I need to take my tablets but I don’t want my friends to see.

Sleep over’s with friends
I don’t want my friend to see me taking my medication and to start asking questions.

Body Image:
Body shape can change as a result of medication.

Issues they may experience in school / college – who if anyone needs to know and how info may be stored

It is not a requirement that schools and colleges are informed of a child or young person’s HIV status. Informing school / college nurses is recommended, however, but is not compulsory.

It is recommended that schools and colleges use universal procedures to clean cuts / wounds of HIV positive children and young people and that if school / college staffs are concerned over serious blood exposure that they contact their local hospital.

It is recommended that children and young people who are aware of their positive status take care if they cut themselves at school.

Sex education in schools may not cover HIV wholly. It is recommended that children and young people take any specific HIV related questions they may have to other professionals involved in their care and support as they may not feel comfortable speaking up during these classes at school.

Disclosure of status

  • Who do I need to tell?
  • Who do I want to tell?
  • Fear and anxiety of reactions of friends, family, partners and professionals
  • Shame and/or Embarrassment on disclosing
  • Confidentiality and concerns over extended disclosure

Managing HIV within the family

Managing HIV within the family

Secrecy and Denial:
In some cases parents feel unable to disclose their positive status to children and/or wider family members and/or they withhold testing for children and/or young people for fear and/or denial of the possibility of HIV.

Whilst recognising the complexity of disclosure within families, it is recommended that families seek support to enable them to disclose and foster open honest communication around the issue of HIV. This can encourage a stronger support system for children and young people within families as well as impacting positively on the adherence of medication, negating secrecy related tension and in some cases saving the lives of children and young people who may be unaware of their HIV status until tested.

A lack of knowledge of HIV within the family:
This can inform the amount and quality of support and information available for children and young people within their families.

Discordance amongst family members:
Why me?

Spin off issues as a result of a positive diagnosis of parent(s) or self:
Anger and Blame.

Spin off issues as a result of one sibling having a positive status, others not:
Jealousy, Rivalry and Competition for Attention.

Death and Bereavement;
as a result of loss of family member(s) to an AIDS related illness.

Displacement:
Children and young people living with extended family as a result of loss of immediate family member(s) to an AIDS related illness.

Role models within families for children and young people:
The importance of honest open communication around HIV and medication adherence so that children and young people can lead by example.

Any specific treatment and care issues for children and young people

The importance of making treatment as easy as possible for children and young people

  • Timing: Supporting them and their parents / carers to encourage children and young people to take medication on time. Suggesting the use of alarms on mobile phones to manage this.
  • Tablet Training: Showing children and young people how to swallow large tablets and ways in which it can be made more palatable by using a sugary drink or candy immediately afterwards.

Adherence

Supporting adherence as highlighted above. Supporting children to have confidence in their medication by enabling them to understand its importance for maintaining their health and wellbeing. Encouraging children and young people to be honest about missing doses “If you don’t take it, talk about it”

Where to go for support locally

Useful Documents and Resources

Word Health Organisation Guidelines on HIV Disclosure for Children Up to 12 Years of Age – http://whqlibdoc.who.int/publications/2011/9789241502863_eng.pdf

CHIVA Guidelines – Talking to Children About Their Health and HIV Diagnosis – http://www.chiva.org.uk/professionals/health/guidelines/followup/talking.html

The Children and Young People HIV Network – Just Normal Young People: Supporting Young People Living With HIV in Their Transition to Adulthood – http://www.ncb.org.uk/media/517556/hiv_network_-_young_people_s_transition_report.pdf

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