|
| ||||||||||||||||||||||||||||||||||||||||||||||||
PEDIATRICS Vol. 103 No. 2 February 1999, pp. 509-511
AMERICAN ACADEMY OF PEDIATRICS:
Planning for Children Whose Parents Are Dying of HIV/AIDS
 |
ABSTRACT |
|---|
Top
Abstract
Background
Conclusion
Recommendation
References
|
|---|
Although the character of acquired immunodeficiency syndrome is changing into a chronic illness, it is estimated that by the end of this century, 80 000 children and adolescents in the United States will be orphaned by parental death caused by human immunodeficiency virus infection. Plans for these children need to be made to ensure not only a stable, consistent environment that provides love and nurturing, but also the medical and social interventions necessary to cope with the tragic loss. Pediatricians should become aware of local laws and community resources and initiate discussion early in the course of parental illness to facilitate planning for the future care and custody of the children. States need to adopt laws and regulations that provide flexible approaches to guardianship and placement of children orphaned by acquired immunodeficiency syndrome.
Health care professionals caring for children of parents
who are chronically or terminally ill with acquired immunodeficiency syndrome (AIDS) should consider raising the issue of planning for the
future of these children at an appropriate time in the course of the
parents' illness. It is estimated that by the end of this century,
parental death caused by human immunodeficiency virus (HIV) infection
or AIDS will result in as many as 80 000 orphaned children and
adolescents in the United States.1,2 For parents who face
worsening illness and impending death, one of the most painful
realizations is the inability to care for their children, plan their
futures, and see them grow to maturity. In the context of HIV
infection, both parents are likely to be infected and possibly ill or
dying, and the mother may be quite isolated and not have assistance
from the father of the children, who may have died or is unavailable.
Future planning for the children can create peace of mind for parents
by assuring that the children will be cared for according to the
parents' wishes concerning their future. Future planning is a
difficult and complex process that requires considerable time and
effort and should be initiated in a sensitive manner early in the
course of illness. Parents often are reluctant to initiate such
planning because of a sense of guilt, denial of the seriousness of the
illness, or fear that others may learn about the diagnosis.
Planning for the future of a child or adolescent who will be orphaned
includes creating a stable, nurturing environment providing love and
stability. At the same time, the legal framework and social
interventions necessary must be provided for the child to cope with the
loss of their parents and to receive necessary medical, mental health,
and educational services.
Children and adolescents who are orphaned by the HIV/AIDS epidemic
are generally from families who have experienced the consequences of
poverty, lack of access to services, discrimination, and family disruption. They are most often cared for solely by their mother, with
or without the assistance of other family members such as a
grandmother.3 It is, therefore, not surprising that parent(s) may be somewhat reluctant to discuss the issue of their own
death and the planning for their children.4,5 Parents with
HIV/AIDS may fear the potential stigmatization and isolation from
family and community that is associated with revealing the diagnosis.
In addition, they may fear losing custody or parental rights to direct
their child's future when they reveal concern about their future loss
of capacity.6 They also may be concerned about the burden
imposed on potential guardians such as a grandmother, sister, or aunt,
and may be reluctant to raise the issue of planning for their children.
Most poignantly, the parents may be reluctant to face their own
potential death and be unwilling to discuss their child's future with
the child or with anyone else.7
A legal guardian is appointed by a court and is empowered, in lieu of a
parent, to make day-to-day decisions for a child, including issues
involving health care, housing, and education. Once a guardian has been
appointed, that person assumes legal authority for the child even if
the chronically ill parent and guardian have agreed informally that the
guardian will not assume responsibility until the parent is no longer
able. A parent can ask the court to designate a guardian for a child,
but the other parent, if alive, must agree to the appointment or be
judged to be unknown, unavailable, or determined to have relinquished
parental rights. A parent can designate a guardian in a will, but the
authority comes into effect only after the completion of the approval
of the guardianship petition by the court after the death of the parent.8-10 Some states have created flexible laws and
regulations that aid ill parents in planning for their children's
future. New York, New Jersey, Illinois, Florida, North Carolina, and
California have instituted a stand-by guardianship law to authorize a
guardian to be temporarily or permanently designated by a chronically
ill parent to make decisions for the child at a specified time such as
at the death of the parent or when the parent becomes physically
debilitated or mentally incapacitated. This guardianship arrangement
can allow the parent to resume custody if sufficient health
returns.9 This approach allows maximal involvement of the
parent while alive, and immediate clarification of guardianship for the
child after the death of the parent.
Foster care agencies generally have not developed flexible
policies for placement of children during episodes of parental illness
and rapid return of the children to the parent when sufficient health
warrants resumption of custody. This is particularly important as HIV
infection becomes a chronic disease with multiple acute episodes of
serious illness. Agencies also should make efforts to keep siblings
from being separated or losing regular contact with one another when
making foster care arrangements.
Children and adolescents who have experienced the death or face the
impending death of a parent require sensitive bereavement counseling
services including information, long-term emotional support, and
preventive services.11-13 Pediatricians should be aware
of community and financial resources to assist such children and
families and should monitor the grief process and provide appropriate
anticipatory guidance and referral when needed.14
Because an increasing number of children and adolescents are being
orphaned because of the death of their parents from HIV/AIDS, health
care professionals should assist chronically ill and dying parents to
plan for the future of their children. Creating loving and nurturing
environments for such children by providing the legal framework; the
counseling and other necessary social and financial services; and the
stability of a clear, consistent family structure enhances the outcome
for children while assuring that chronically ill parents participate
actively in the planning process.
THE PROBLEM
BACKGROUND
Top
Abstract
Background
Conclusion
Recommendation
References
CONCLUSION
Top
Abstract
Background
Conclusion
Recommendation
References
RECOMMENDATIONS
Top
Abstract
Background
Conclusion
Recommendation
References
COMMITTEE ON PEDIATRIC AIDS, 1998-1999
Catherine Wilfert, MD, Chairperson
Jane Ellen Aronson, MD
Donna T. Beck, MD
Alan R. Fleischman, MD
Mark W. Kline, MD
Lynne M. Mofenson, MD
Gwendolyn B. Scott, MD
Diane W. Wara, MD
Patricia N. Whitley-Williams, MD
LIAISON REPRESENTATIVE
Mary Lou Lindegren, MD Centers for Disease Control and
Prevention
| |
FOOTNOTES |
|---|
The recommendations in this statement do not indicate an exclusive course of treatment or serve as a standard of medical care. Variations, taking into account individual circumstances, may be appropriate.
| |
ABBREVIATIONS |
|---|
AIDS, acquired immunodeficiency syndrome; HIV, human immunodeficiency virus.
| |
REFERENCES |
|---|
|
Top
Abstract
Background
Conclusion
Recommendation
References
|
|---|
-
Michaels D,
Levine C
Estimates of the number of motherless youth orphaned by AIDS in the United States.
JAMA.
1992;
268:3456-3461
[Abstract/Free Full Text] -
Caldwell MB,
Flemming PL,
Oxtoby MJ
Estimated number of AIDS orphans in the United States.
Pediatrics.
1992;
90:482
[Abstract/Free Full Text] -
Schable B,
Diaz T,
Chu SY
Who are the primary caretakers of children born to HIV-infected mothers? Results from a multistate surveillance project.
Pediatrics.
1995;
95:511-515
[Abstract/Free Full Text] - Lipson M What do you say to a child with AIDS? Hastings Cent Rep. 1992; 23:6-12
-
Nicholas SW,
Abrams EJ
The "silent" legacy of AIDS: children who survive their parents and siblings.
JAMA.
1992;
268:3478-3479
[Abstract/Free Full Text] - Levine C AIDS and the changing concepts of family. Millbank Q. 1990; 68:33-58 [CrossRef]
- Levine C, ed. A Death in the Family Orphans of the HIV Epidemic. New York, NY: United Hospital Fund; 1993
- Levine C, Stein GL. Orphans of the HIV epidemic unmet needs in six US cities. New York, NY: The Orphan Project; 1994
- Herb A Standby guardianship a viable legal option for the future care of children. J Am Med Women Assoc. 1995; 50:95-98
- Cooper EB. HIV infected parents and the law issues of custody, visitation, and guardianship. In: Hunter ND, Rubinstein WB. AIDS Agenda: Emerging Issues in Civil Rights. New York, NY: WW Norton Co, Inc; 1992:67-117
-
American Academy of Pediatrics, Committee on Psychosocial Aspects of Child and Family Health
The pediatrician and childhood bereavement.
Pediatrics.
1992;
89:516-518
[Abstract/Free Full Text] - Rosenheim E, Reicher R Informing children about a parent's terminal illness. J Child Psychol Psychiatry. 1985; 36:995-998
- Siegel K, Gorey E Childhood bereavement due to parental death from acquired immunodeficiency syndrome. J Dev Behav Pediatr. 1994; 15:566-570
- Draimin B. A second family? Placement and custody decisions. In: Gebelle S, Gruendel J, Andiman W, eds. Forgetting Children of the AIDS Epidemic. New Haven, CT: Yale University Press; 1995:125-139
Pediatrics (ISSN 0031 4005). Copyright ©1999 by the American Academy of Pediatrics
Statements of reaffirmation:
- AAP Publications Retired and Reaffirmed
- American Academy of Pediatrics
Pediatrics 2005 116: 796.[Extract] [Full Text] [PDF]
-
AAP Publications Retired and Reaffirmed
Pediatrics 2009 123: 1421-1422.[Extract] [Full Text] [PDF]
This article has been cited by other articles:
 |
|
 |
|
  B. O. Cowgill, M. K. Beckett, R. Corona, M. N. Elliott, A. J. Zhou, and M. A. Schuster Children of HIV-Infected Parents: Custody Status in a Nationally Representative Sample Pediatrics, September 1, 2007; 120(3): e494 - e503. [Abstract] [Full Text] [PDF]
|
|
|
|
|
|
S. M. King, Committee on Pediatric AIDS, and Canadian Paediatric Society, Infectious Diseases a Evaluation and Treatment of the Human Immunodeficiency Virus-1--Exposed Infant Pediatrics, August 1, 2004; 114(2): 497 - 505. [Abstract] [Full Text] [PDF]
|
|
|
|
 |
|
 M. J. Rotheram-Borus, P. Lester, P.-W. Wang, and Q. Shen Custody Plans Among Parents Living With Human Immunodeficiency Virus Infection Arch Pediatr Adolesc Med, April 1, 2004; 158(4): 327 - 332. [Abstract] [Full Text] [PDF]
|
|
|
|
|
|
Committee on Pediatric AIDS Identification and Care of HIV-Exposed and HIV-Infected Infants, Children, and Adolescents in Foster Care Pediatrics, July 1, 2000; 106(1): 149 - 153. [Abstract] [Full Text]
|
|
| ||||||||||||||||||||||||||||||||||||||||||||||||