HIV/AIDS has profound effects on an individual's physical, emotional, social, and economic wellbeing, and addressing these dimensions of life is an integral part of HIV care. Effective HIV/AIDS treatment programs provide far more to patients than medication, and take into account a broad range of issues, including: psychological, spiritual, and psychosocial support, as well as the need for community mobilization around HIV/AIDS and good health. This collection of services – ranging from counselling to practical assistance – is loosely titled “psychosocial support,” and may include:
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Individual, family, and/or group counselling
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Disclosure support
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Identification, assessment, and treatment of mental health problems related to HIV
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Respite for caregivers
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Community and recreational activities for children and families
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Referral for practical assistance (community food banks, vocational counselling, employment opportunities, microfinance projects, etc.)
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Referral for spiritual / religious support
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Referral for legal advice
11.1. Disclosure
Parents and caretakers of HIV-exposed infants are understandably anxious about the health of their children. Most are worried that their child has or will have HIV infection. Given the complexity of the subject, it can be very difficult to explain the issues around infant diagnosis to parents and caretakers. However, a number of steps can be taken to help them better understand the situation.
Begin talking about infant diagnosis as early as possible, preferably during the antenatal period or the first paediatric appointment.
Inform parents that it can take many months, often as long as 18 months, to be sure that the child does not have HIV infection.
Prepare them for early diagnostic testing by telling them that the child will have a blood test during the first months of life (6-12 weeks) that will aim to diagnose HIV infection in the baby.
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If the early diagnostic test is negative, parents can be reassured that the evidence of virus cannot be found so far. It may still be there, but this is a good sign. As long as s/he stays healthy, the baby will be tested again when s/he is older (>12 months).
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If the early diagnostic test is positive, parents will need to be told that the child is likely to have HIV infection. The test will be repeated to make sure it is correct and other tests will be done to evaluate the baby's health status. It can be reassuring for parents to learn that care and treatment will be available to the child now and in the future.
Speaking openly with parents at each visit can be very helpful. Asking them for their questions, and addressing all questions and concerns can lessen their anxiety. Telling them about the baby's progress and highlighting positive findings (good growth, normal examination) can also be reassuring.
Inform parents of infants with initial negative virologic testing that a subsequent test for HIV antibody will be conducted at >12 months. However, if the child is symptomatic, then virologic testing may be to be repeated at an earlier date.
Sharing a diagnosis of HIV may be difficult under the best of circumstances, and discussing HIV/AIDS with children poses additional challenges. Adults always struggle with the questions of whether, when, and how to tell children that they have HIV. It is important for a child to know his/her HIV status and/or that of a family member. Open communication about the infection or illness will allow the child to express his/her fears, obtain support, understand the infection, and participate in finding ways of taking treatment regularly. Of course, disclosure should take family and community issues into consideration, should occur when age-appropriate, and should be conveyed with appropriate language and terms.
11.1.1. Issues to be considered
It is important to assess each caregiver's awareness of the child's right to understand what is happening to him/her or to someone in the family, and be involved in planning for the future.
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Protecting the child from painful topics leaves him/her to cope with fears alone: fantasies may be worse than reality.
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Children become frightened when they sense fear in adults: talk naturally to the child about the infection and illness, and let her/him understand that the caregiver feels comfortable with this. Be attentive to a child's ways of expressing anxiety (withdrawal, anger, acting out, regression, craving attention, difficulty sleeping) and encourage him/her to talk about it.
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Start disclosing HIV status as soon as possible in an age-appropriate way
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Ideally the caregiver should be the one to disclose to the child, with a trusted relative/family friend if possible, and should provide consistent ongoing support and loving empathy throughout the process
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Disclosure to children should be done little by little, and includes encouraging questions, providing truthful answers and making the child understand s/he can come back with more questions at any time, providing a loving context, and using child-friendly language
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Listen to the child and encourage him/her to express fears and emotions
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Always be truthful to gain the child's trust
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Involve the child in decisions concerning his/her future
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Reassure the child that it is not his/her fault if s/he or a family member is sick
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Tell the child whom s/he can talk to about the illness, not that it is a secret
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Link caregiver with peer support group for caregivers of a child infected by HIV
11.1.2. Disclosure of HIV status to a child according to his/her age
Up to 2 years
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Talk to the child simply and naturally about his/her health.
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Avoid transmitting anxiety to the baby through body language or voice tone.
2 - 3 years
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Be aware of children's sensitivity to adult's feelings through body language.
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Talk openly and naturally about child's health without transmitting anxiety.
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If the child is sick talk gently about his/her illness, and provide constant loving care.
3 - 5 years
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Use stimulating questions such as asking the child what s/he understands about having to go to the clinic, taking medicine, being often sick, and what s/he fears.
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Listen carefully and answer truthfully and naturally, giving little information at a time, as the child seems ready to take it in.
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Use simple language, such as “a virus (or germ) inside you that can make you sick”, “medicine will make the body stronger to fight against the virus”, “the same virus your mother has and sometimes make her sick”.
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Answer questions about dying: “everyone will die one day, no one knows when, meanwhile all children need to look forward to playing, learning new skills, making friends and growing up”.
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Provide ongoing loving reassurance and support.
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Tell the child that s/he can play with, hug and hold hands with other children without giving them the virus, and that if some adults seem afraid it is because they don't know enough about this.
6 - 9 years
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Start disclosure process as soon as possible, paying attention to nonverbal expressions of anxiety and denial.
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Encourage and stimulate questions from the child. If the child does not ask questions, ask him about his fears.
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Talk about the illness openly and simply, giving information a little at a time, as the child seems ready to take it in.
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Provide information about the infection/ illness, its name, its causes and whether it will lead to death (see 3-5yrs).
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Explain that medicine will fight against the infection and make him/her feel better, but that it needs to be taken very regularly.
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Reassure the child that s/he must lead a life like all children, and can go to school, play games, hold hands and hug other children without transmitting the infection.
11.2. Adherence to treatment
Adherence to antiretroviral treatment is essential for treatment success. For sustained suppression of viral replication, the adherence has to be more than 95%.
Children's adherence depends largely on the understanding, perseverance, and creativity of the parent or other caregiver. An older HIV-infected child who understands about his/her infection should be actively involved in adherence to ARV treatment, but will need constant support to maintain it.
While preparing for counselling for adherence, it is important to assess:
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HIV-positive parent's own adherence to treatment if s/he is the caregiver
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caregiver's awareness of risks to the child deriving from incorrect adherence
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whether the caregiver is anxious that the medication could harm the child
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caregiver's cognitive capacity to understand the nature of the treatment and importance of adherence
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older child's awareness of importance of adherence to treatment
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presence of depression or “giving up” in the caregiver or older child
The caregivers have to be informed that
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child's health depends on strict regularity of pill-taking
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ART has possible transitory side-effects that vary in duration and severity
Thereafter, the treating team should
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dentify strategies to facilitate correct adherence (taste, association of pill-taking with regular daily occurrences or game, respect for confidentiality)
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let the child take part in choosing the best way to take medicine regularly
Based on the above assessment the treating team should develop a treatment plan which respects the child's privacy and allows him/her to carry on with regular activities.
The treating team should arrange next follow-up visit and facilitate linkages/home visits.
11.3. Psychosocial support for HIV-infected children
Support for families
Caregivers may not know how to provide essential care and attention to the child. Helping caregiver to strengthen their coping skills will allow them to better support the children.
Support for HIV infected children
HIV-infected children have the same basic needs as all children. They should be encouraged and assisted to lead the life of any other child and helped to develop healthily.
In addition, an infected child has further serious needs:
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to face her/his own infection and learn to live with HIV
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to look after his/her health
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to grow and develop without transmitting HIV to others
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to overcome discrimination/ignorance/fear in others in a positive way
The recommendations for supporting a children living with an HIV-infected family member should also be applied to the infected children who themselves are likely to be living with an infected or sick family member.
The process of providing psychosocial support to children and their families includes assessment of:
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Family needs
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psychological and social needs with special attention to stigma,
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financial needs linked to lack of income due to illness and death,
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practical needs particularly concerning child-care,
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legal needs
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Child's needs:
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quality of care and support;
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exposure to developmental stimuli such as communication, play, school, learning new skills, recreational activities;
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psychological condition linked to fear and understanding of own and other family member's HIV status;
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understanding of HIV/AIDS and of the importance of taking treatment regularly;
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possible risks of discrimination, linked to stigma
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Caregiver's own support and guidance needs, in relation to issues such as disclosure, adherence, support for a sick or dying child, coping with stigma, accessing available services
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Availability of further adult support in the family or community to ensure respite care and support to a sick child
The family could be assisted to
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identify ways of generating further income
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identify potential support figure or service in family circle and/or community
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encourage caregiver to meet own support needs
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access legal services for coping with stigma, inheritance issues, child abuse or exploitation
The treating team should then
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develop a plan addressing these needs
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involve the child in planning for his/her future
Support could be obtained from
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peer support groups for caregivers/older children
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community volunteer support
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organizations of PLWHAs
It is also important to arrange follow-up meetings or visits to review the plan's progress and to modify it if necessary
11.3.1. Support development in HIV-infected children
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Assess caregiver's awareness of the child's need to lead a normal life of any child, and the need for stimulation for healthy child development
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Advise the caregivers:
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not to overprotect the child
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to make sure that the child leads a full life, including play, educational and recreational activities with other children
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to show appreciation for the child's achievements and encourage further improvement
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to provide guidance, trust and respect for older children
Counsel caregiver on age-specific needs to ensure healthy development, as follows:
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| Up to 4 Months of age | 4 months up to 6 months | 6 months up to 12 months | 12 months up to 2 years | 2 years and older |
|---|
| Play: Provide ways for your child to see, hear, feel and move. | Play: Have large colourful things for your child to reach for, and new things to see. | Play: Give your child clean safe household things to handle, bang and drop. | Play: Give your child things to stack up, and to put into containers and take out. | Play: Help your child count, name, and compare things. Make simple toys for your child.
Encourage playing with other children |
| Communicate: Look into your child's eyes and smile at him or her. When you are breastfeeding is a good time. | Communicate: Talk to your child and get a conversation going with sounds or gestures. | Communicate: Respond to your child's sounds and interests. Teach your child the names of things and people. | Communicate: Ask you child simple questions. Respond to your child's attempts to talk. Play games like “bye” | Communicate: Encourage your child to talk. Answer your child's questions. Teach you child stories, songs and games |
11.3.2. Support for special circumstances
11.3.2.1. For children with HIV-infected parents and siblings
Caring for sick parents and siblings has a huge emotional impact on children. Witnessing illness and death of close family members, and discrimination and stigma, can result in severe depression. Children often are not able to talk about their fears and difficulties. Adequate care, protection, guidance, and support are often lacking. This can inhibit the children's health. The family often needs assistance to understand children's needs, how to communicate with and support them, and how to plan ahead for them. Children whose parent(s) or other family members are HIV-infected need to: (advice appropriate to their age)
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know who is responsible for them
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understand what is happening (they often know more than they are told)
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be supported in their fears and their emotions
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be able to continue to attend school and play with friends
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understand that they are not expected to take over from their parents
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be helped to cope with illness, dying and bereavement
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get health care when they need it
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get legal protection for rights
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be protected from sexual abuse and exploitation
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be helped to demand and access social services
Caregivers of children living in families where one or more members are infected by HIV may find it difficult to provide essential care and attention to the children. Helping caregivers to strengthen their own coping skills and capacities will allow them to better support the children.
11.3.2.2. Support when an HIV-infected parent or sibling is sick or dying
In such a situation assess:
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Availability of adult support in the family or community that can provide provisional and/or long-term loving care for the child/children
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Need to protect the child's inheritance rights
The following steps may be taken:
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gradual transition to a loving caregiver; siblings are better off together in their own environment than broken up into different families or other structures
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talk to the child about the illness and answer possible questions about death truthfully taking care to always leave space for hope
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allow the child to spend time with the sick parent or sibling
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help the child identify small tasks “to help”
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tell the child it is not his/her fault that the parent or sibling is sick or dying
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encourage and assist the child to carry on with habitual everyday activities such as school, sports, recreational activities, and to keep up friendships and relationships
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encourage child to talk about his/her feelings. Listen and provide loving support
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start a memory-box containing happy memories and loved objects
Guidance and information on relevant services available in the community may be provided, such as:
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home care
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community volunteer support
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part or full-time foster care
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support groups for older children
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child counseling
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schools day-care centers
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sports and other play activities
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services providing school fees
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meals for children
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legal services
11.3.2.3. Additional assistance when a parent or sibling has died
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be patient with a grieving child, encourage him/her to express grief
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encourage the child to talk about the person who has died
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listen to the child, provide loving care and empathy
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allow the child to participate in the dying process and burial activities and to share in adults' expression of grief, so as not to feel alone in his/her bereavement
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make sure that the child's routine changes as little as possible, tell the child that normal everyday life will go on as before (school, day care, playing with friends, sports), and encourage him/her to go on continue participating in all activities
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make sure the children's inheritance rights are respected
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assist the caregiver to draw up a plan for the children, bearing in mind the points listed above.
