| Individualized process over time |
|
| Phase 1. Pre-Disclosure |
The ADDS meets with the caregiver during the child’s routine clinic visits and builds rapport showing sensitivity and respect for the intense feelings the caregiver may have about disclosure. (M, C)
The ADDS determines whether and when the caregiver is considering disclosing (P). If the caregiver is ready to disclose, the ADDS begins Phase 2; If the caregiver is not ready to disclose, the ADDS continues to meet with the caregiver during the child’s routine clinic visits to provide an opportunity for the caregiver to discuss thoughts and concerns that are barriers to disclosure and to offer relevant information and skills building. The ADDS:
Prompts the caregiver to reflect on his/her views about the pros and cons of disclosure and offers him/her the opportunity to ask questions (I, M). Discusses anticipated intrapersonal and interpersonal consequences of disclosure in the socio-cultural context of caregiver’s and child’s life situation and priorities (M, C). Offers pertinent information tailored to the interests and knowledge level of the caregiver (e.g., regarding HIV transmission, treatment and prognosis; adherence - importance and relationship to child’s knowledge of illness and viral outcomes; disclosure as process and age/developmentally-appropriate words that can be used to discuss the child diagnosis; typical adjustment process; sources of support/resources). The ADDS respects the caregiver’s timing, but provides information about how nondisclosure or partial disclosure may affect the child when she/he learns of the diagnosis. (I, M, C) Uses exercises to build caregiver’s confidence and skills for disclosure and accessing sources of support. (S, C)
|
| Phase 2. Disclosure |
If the caregiver is ready to disclose, the ADDS facilitates disclosure appropriate to the developmental age of the child (C). The ADDS: Prompts the caregiver to think through how he/she wishes the disclosure conversation to proceed. (M, S, C) Encourages the caregiver to choose a place to disclose where the child will be most comfortable to talk openly and at a time that does not conflict with other potentially stressful or emotional times (e.g., special occasions, death in the family). (I, S, C) Prompts the caregiver to consider how she/he expects the child to respond and role plays typical responses and questions that the child may ask so the caregiver is prepared with open and honest answers. (M, S, C) Encourages the caregiver to consider whether the child will be asked to keep the diagnosis a secret, ways to communicate that this does not mean he or she has done anything wrong, and to whom the child can discuss his/her illness. (I, M, S) Encourages the caregiver to show support and acceptance of the child and to communicate to the child that he/she didn’t do or say anything to cause the disease and that the family will always support him/her. (I) Offers to be available to the family for support/guidance at the time of disclosure and schedules a time for a follow up call or clinic visit. If the caregiver does not wish to disclose on his/her own, the ADDS offers to be present at the time of disclosure. (M)
|
| Phase 3. Post-Disclosure |
The ADDS makes a follow up call or meets with the caregiver within a few days following the initial disclosure. The ADDS continues to have follow up meetings with the caregiver and child during routine clinic appointments or more frequently if indicated to:
Answer questions, offer support to the caregiver, assess for post-disclosure problems and coping, provide referral to community services that the family may need, and to continue to help the child to understand, in an age appropriate manner, HIV infection and its implications for his/her day-to-day activities. (I, M, C) Remind the caregiver that disclosure is not one time event. Once the diagnosis has been explained to a child, it needs to be reinforced and regularly discussed with the child over time. As the child develops and matures, the child’s understanding of the illness and its implications are expected to change. (I, M, C, P)
|
