The Clinical Guide to Supportive and Palliative Care for HIV/AIDS

A Clinical Guide to Supportive and Palliative Care for HIV/AIDS • Chapter 16: Grief and Bereavement• Establishment of or reconnection with a social support system• Ability to cope effectively with temporary upsurges of grief• Comfort 26 picas with the quest to find meaning• Personal growth/transformationThose who grieve the death of a loved one never truly “get over” the loss. Even after peopleaccomplish the tasks of grieving, the pain of the loss is still present though hopefully less intenseand more manageable.UNIQUE ASPECTS FOR CHILDREN■ As noted earlier, children are often disenfranchised grievers because they are considered“too young” to understand what has happened. This is compounded when dealing with AIDSrelateddeaths, another type of disenfranchised grief. The age, intellectual and emotional developmentalstages, and circumstances of the loss will all affect the child’s grief process. Wolfeltnotes that initially children often experience shock and disbelief, then experience similar physiologicresponses to adults: fatigue, changes in sleep patterns, appetite changes, headaches,tightness in the throat. 29 They also tend to experience a wide variety of emotions and cognitiveresponses. One unique aspect of children’s grief is regressive behavior (such as wanting tonurse, sleep with a parent, use baby talk, suck their thumb even though they have not exhibitedsuch behavior for a while). Wolfelt attributes this to a desire to return to an earlier time whenthe child felt protected and secure. 29 He also describes the phenomena of a child approachingtheir grief “in bits and pieces”—crying or calling out for the loved one and then returning toplay within minutes. This coping mechanism works well for the child but can be difficult for thefamily to understand.Often children will “act out” in an attempt to get attention. Even if a child is not able to comprehendthe loss, she can respond to the changes in the emotional status of the family.Developmentally, children must come to understand that death is final, irreversible, inevitable,unpredictable, and universal. They must also perceive the concept of nonfunctionality and dealwith causality. 29 Table 16-3 illustrates children’s developmental stages, possible responses andsuggested interventions.Children dealing with AIDS-related deaths may be coping with the deaths of other family membersor have HIV themselves. They are at risk for complicated grief because of the multipledisenfranchised nature of their grief experience. (See Chapter 12: The Care of Children andAdolescents.)XVISUPPORT FOR THE BEREAVED■ The palliative care team can provide support to the bereaved by acknowledging the loss,1, 14sharing memories of the deceased, normalizing grief responses, and encouraging good self-care.To do so, the palliative care team should be familiar with the dynamics of the grief process andbe able to identify healthy and unhealthy coping behaviors.Immediately after the death, it is important to reach out to the bereaved, acknowledge the loss,and give permission to grieve. In AIDS-related deaths there may be conflicts among the biologicaland chosen families. The palliative care team should appreciate the perspectives of bothfamilies, without taking sides or judging their actions. 2U.S. Department of Health and Human Services • Health Resources and Services Administration • HIV/AIDS Bureau 339