. "5. Care and Caring From Diagnosis Through Death and Bereavement." When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC: The National Academies Press, 2003.
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Sourkes, 1995b). A poor body image, low self-esteem, and embarrassment about physical appearance may lead adolescents (and younger children also) to withdraw socially.
Seriously ill adolescents may be perceived by parents and professionals as asexual, and they are often deprived of the opportunity and privacy for sexual exploration. The emergence of sexuality is an integral part of adolescents’ development, and those who are ill often mourn the fact that they may not live to have the experience of sexual intimacy. Alternatively, they may act out sexually in a quest for acceptance and affirmation. From both a psychological and a public health perspective, sexuality is a critical issue as infants and children infected with HIV now grow into adolescence (Stuber, 1992). For these and other adolescents, caregivers may find it difficult to face sexual issues and provide education and psychological counseling to respond to adolescent needs and anxieties (Joint Working Party, 2001).
Recognizing adolescents’ concerns and emotional distress can also be difficult for family members and clinicians because adolescents may prefer to confide in a close friend rather than parents or professionals and because they may cope by denying how ill they are. They may try to hide their worries and fears to protect their parents. Although recognizing that guiding research is limited, Stevens (1998) has suggested some strategies for working with adolescents, including offering and negotiating choices about their medical care and personal matters (e.g., what to wear), recognizing small achievements, encouraging peer support including opportunities for discussion in settings such as camps, and using art and writing therapeutically.
Emotional Care for Families
[Michael’s doctor] worked the entire way knowing that if Michael didn’t make it, we were still going to have to get through it. So she treated us, as well as treated Michael.
Rose Conlon, parent, 2001
The profound and enduring impact on the family of a child’s fatal or potentially fatal condition cannot be overestimated, even when the child survives. From the time of diagnosis, the relationship between the child and the rest of the family pivots around threatened or expected loss. Unless death is sudden, families will experience grief in anticipation of the child’s death as well as the grief that follows death, if death is the outcome.
Support for the family may be garnered from many sources: the professional caregiving team, the extended family and friends, and the larger