Bereavement

Parenting is a permanent change in the individual. A person never gets over being a parent. Parental bereavement is also a permanent condition. The bereaved parent, after a time, will cease showing the... symptoms of grief, but the parent does not "get over" the death of a child. (Klass 1988, p. 178)

For families who experience the death of a child, bereavement is a process that ebbs and flows over a lifetime. Certain experiences in the bereavement process are relatively universal; however, the experience is highly individualized for each family, depending on many factors. These factors include the child's developmental level, past psychiatric history (particularly coping with past losses or trauma), family composition and background, ethnicity, culture, spiritual beliefs, and available support (Raphael 1983; Rosen 1998; Stroebe et al. 1993). Individuals in the same family grieve in different ways and on different "schedules"; in fact, couples often express loneliness when one member is not "in sync" with the other, despite the fact that they are mourning the loss of the same child (McCracken and Semel 1998; Rando 1986; Rosof 1994; Schiff 1977; Shapiro 1994a, 1994b). All too often, siblings are "disenfranchised grievers" (Davies 1999); their loss is minimized compared to that of the parents. Thus, they are often admonished to "be strong for your parents" with little acknowledgment of their own unique grief.

Bereavement follow-up by the professional team is an intrinsic component of comprehensive pediat-ric palliative care. Families often express the sentiment of a double loss: First and foremost, they mourn the loss of their child, as an individual and as a member of the family and the greater community. Second, compounding their grief and disorientation, they mourn the loss of their "professional family"— the treatment team whom they have known and trusted, often over months and years (Contro et al. 2002; Institute of Medicine 2003). Contact from a team member after the child's death not only assuages the family's sense of abandonment but also can serve a crucial preventive role by identifying families at particular risk for serious psychological, social, emotional, and physical sequelae. A history of many losses, mental illness (e.g., severe depression or past suicidal behavior), and alcohol or substance abuse are a few of the issues that may indicate a predisposition to an especially difficult bereavement period. Family relationships that were already fragile or stressed can become severely disrupted or deteriorate further. In both adults and children, extremes of emotion (or lack thereof) that persist over time, such as consuming rage that envelops the individual and alienates the family or total suppression of any sign of feeling, can be debilitating.

The palliative care team, in conjunction with other community providers, assesses the needs of the bereaved family and assists them either directly or by advocating for and engaging appropriate resources. In most communities, at least some resources are available for the bereaved, including religious institutions, hospice support groups, mental health agencies and providers, and school counselors. Common shortcomings, however, are that services are still geared primarily toward adults and are in short supply for non-English speakers. These reservations notwithstanding, the palliative care team should maintain a current resource list that targets the demographics of their population (Sourkes et al. 2005).

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