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Support to families of children with HIV infection.

Support to Families of Children with HIV Infection

Since 1965, the Association for the Care of Children's Health (ACCH) has played a leading role in helping the health care system become more responsive to the unique needs of children and their families. A nonprofit organization headquartered in Washington, DC, ACCH has local affiliates across the United States and Canada, with more than 3,800 members -- a multidisciplinary membership that includes health care professionals, educators, researchers, and parents of children with special needs.

ACCH focuses specifically on psychosocial and developmental issues in pediatric health care, thereby fostering the well-being of children and families. Among the broad range of issues ACCH addresses are:

* Family-centered care and parent/professional collaboration in the design, implementation, and evaluation of child health policies and programs;

* The enhancement of knowledge in child development, family dynamics, and communication skills for professionals providing direct care to children;

* Hospital policies and programming that are consistent with family-centered and psychosocial principles;

* Architecture and interior design of health care facilities that are supportive of failies and care providers; and

* Promotion of alternatives to hospitalization for children by ensuring that appropriate support is available to families caring for children with special needs at home and in the community.

ACCH, with support from the Bureau of Maternal and Child Health (MCH), has sponsored several activities for families caring for children with HIV infection. The first, in 1988, was to enable officials at the Office of Maternal and Child Heath to hear directly from families about the kinds of services and supports that are needed to more effectively care for their children. The Commitment to Caring Campaign has sponsored four additional activities for families caring for children with HIV infection. The first occurred at the 5th Annual Pediatric AIDS Meeting in September, 1989, and the second was a skills-building weekend in February, 1990. The third meeting was in conjunction with the ACCH Annual Conference and Parent Network Meeting in May, 1990, and the fourth was a two-day educational and networking session October 19-21, 1990. The next meeting of the Network is scheduled February 9-12, 1991, during the 6th Annual Pediatric AIDS Conference in Washington, DC.

Training sessions for families are planned in conjunction with key national meetings to facilitate family/professional networking and joint learning appointments. Specific curriculum developed for the training sessions have included:

* Starting and maintaining family support networks in their home communities;

* Understanding health and education systems and entitlements;

* Obtaning information and services for your child;

* Communication in families; and

* Understanding and supporting a parent's grief.

There are currently over forty family members who have agreed to have their names shared with other families for support and networking. These families have been contacted by telephone and mail by family members across the country seeking support and information.

An important source of support for families caring for children with HIV infection is ACCH's bi-monthly "Family Network Newsletter," which includes information about the activities of families in the network and is intended to be an informal way of maintaining contact among the families.

Another important mechanism for providing support to families caring for children with HIV infection is the ACCH Parent Network. This Network includes over 800 parents of children with special health care needs who can serve as support and information sources for the families affected by HIV infection.
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Title Annotation:Family Support Bulletin
Publication:The Exceptional Parent
Date:Jan 1, 1991
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