Palliative Care and Communication User Essay

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No body of evidence has developed to support these concerns, influential though they have been.

It is helpful to recognize that they are not new issues, but have frequently been identified and applied to many groups and individuals. Such concerns have often been associated with traditions of 'protecting' (vulnerable) service users, issues of 'gate keeping' by service providers and paternalistic health and welfare cultures (Brownell, 2006). This is in sharp contrast to more recent thinking that patients and service users should have the chance to be 'co-producers' of their own welfare.

Stress, Anger in Communications

Although most assessments of bereaved children have not included symptoms of traumatic stress, recent reports of these symptoms as a component of some children's responses to loss have made them a necessary part of grief assessment and intervention. The study of trauma and grief emerged from different practice experiences and theoretical frameworks. Only in the past two decades have the simultaneous constellations of trauma and symptoms of grief been identified as a risk factor for longer-term adverse outcomes (Chadiha, 2000). The proposed diagnosis of traumatic grief in children indicates that symptoms of trauma interfere with their grief. For example, remembering the lost person generates intense feelings of terror; consequently, helpful reminiscing is avoided. In this way, images of a gruesome or violent death may interfere with more positive memories. Conversely, feeling frightened and vulnerable also can elicit grief as children remember the strong care- giver who is no longer available to protect them. 'Traumatic grief' has been used to refer to conditions in children that manifest consequences of both grief and trauma (Wu & Schimmele, 2005). Investigators suggest that when symptoms of trauma and bereavement are present at the same time, it is advisable, and often essential, to address and at least partially resolve the symptoms of trauma before the bereavement issues can be processed successfully (Zink, et al. 2003).

This is now being questioned by more recent findings. The presence of symptoms of trauma may not interfere with the child's ability to grieve. In Aday's, (2005) study of children whose parent or sibling committed suicide, the children's depressive symptoms were not prolonged by the presence of symptoms of trauma. Preliminary evidence from our work with the families of New York City firefighters who died suggests that because the two constellations of symptoms are often intertwined in children, the two may need to be treated simultaneously. Finally, current studies of traumatic grief responses in children and adolescents are exploring therapeutic approaches that will lead to the resolution of manifestations of both trauma and grief (Chadiha, 2000). An important first step in reaching this goal is to identify the presence and intensity of these responses.

The Expanded Grief Inventory, developed by Yorgason, et al.( 2006) at the University of California at Los Angeles, is a measure that, in our experience, shows great promise because it categorizes the components of the traumatic grief experience as uncomplicated grief, complicated grief and traumatic responses to the death of a loved one. What is the role of qualitative methods in bereavement research? An important methodological development over the past decade has been the inclusion of more systematic and sophisticated qualitative strategies used in research with specific sub-populations of bereaved children to increase understanding of variations among subgroups, contextual variables and bereaved children's thought processes. To identify patterns of responses to loss and to adjust interventions accordingly, these strategies include grouping children on the basis of their developmental attributes rather than arbitrary age-related categories (Wu & Schimmele, 2005).

Other important subgroups of children include those who experienced an expected vs. unexpected death; a death by suicide or homicide; the death of a parent or sibling, a public catastrophic death, such as occurred on 11 September 2001; and multiple terrorist events in affected countries. Such methods hold promise for moving the field to a new level of understanding: one that integrates population-based mediating variables with how those variables interact to affect individual outcomes differentially (Baarsen & Broese van Groenou, 2001). Because qualitative methods can also be used to explore the total ecological context in which death occurs, they make it possible to address questions about complex situations, such as the need for intervention as stresses are occurring and at different levels of social organization: individual, family, school, community and larger governmental structures. Should intervention models change in duration, intensity and complexity? Increasingly, studies have concluded that recovering from grief is often a longer and more varied process for both children and adults than is commonly understood in western culture.

With adequate resources and social support, the majority of bereaved children demonstrate few negative mental health outcomes in the short run - 14 months to 2 years after the death of a parent (Beach, et al. 2005). However, three studies have reported an increase in children's symptoms and problem behaviors after two years, highlighting the need for longer- term research to understand more fully possible delayed reactions and the influence of loss on children's functioning over the course of development (Yorgason, et al. 2006). For some children, each new stress may exacerbate, in a cascading fashion, previous levels of stress and perceptions of vulnerability that overwhelms their capacity to cope.

Certainly, children and adolescents living in high- crime environments are more likely to experience multiple and over- whelming traumatic stresses. For all children, new, more sophisticated developmental abilities and added developmental, cultural-ecological demands have the potential to evoke the memory and the grief of previous losses in new ways as they mature.

What remains unclear is whether and how losing a parent in childhood may create a greater vulnerability to later life events and transitions. In which children does the death increase negative expectations and intense feelings of hopelessness and helplessness in the face of stressful situations or reminders of the loss? Conversely, which children are likely to develop greater confidence in their ability to cope with stress as they master successive related challenges? The world changes dramatically for most children after a parent's death, whether the death was the result of illness or an unexpected and traumatic occurrence. Multiple other changes take place that may only become apparent to the children over time. Their surviving parent may become depressed or unable to help them learn and develop, as the parent who died was able to do. They may have to move from the family home (Brownell, 2006). They are faced with constant reminders of something missing in their lives: the guidance, support, affection and strength formerly provided by the lost parent. Therefore, interventions need to focus not only on helping children with their grief over the lost relationship and the lost parent's specific functions but over the secondary changes that are a consequence of the death as well.

It may also feel difficult to communicate openly when relating to someone who is clearly in pain or is so tired they cannot concentrate. It may feel particularly difficult to know what to say when the person with whom one wishes to speak requires onerous attention or seems to impose suffering on the lives of others. In such situations, anger, resentment and guilt may remain unacknowledged for fear of altering the fragile balance of the family. In other contexts, it is issues related to sexuality that might be more difficult to think about. Some find that illness alters their expectations of sexual relationships, particularly where there is a paralysis, chronic pain or marked physical disfigurement. Even with psychosexual counseling aimed at exploring other ways of pleasing one another, the shock of the condition and change in appearance may leave partners reluctant to recreate or simulate the physical intimacy they once had (Yorgason, et al. 2006).

This is a painful decision. Silence about acknowledging grief, disappointment, revulsion, or of physically hurting one another may be aimed at protection. Far from protecting, these added boundaries widen the gap they were striving to close (Lalive et al. 2003): just when family members most need to re-establish a shared understanding of what is happening, they may be less available to one another. In many cases, it is the concrete aspects of a condition that are discussed openly, including dates of diagnoses, appointments, blood levels and temperatures. However, what is less frequently shared is the story of uncertainly, anxiety and fear.

There may be an understandable desire to place a 'protective filter' (Beach, et al. 2005) on how much is shared with children: parents may wish to wait and assimilate news about their condition before sharing this with children. However, this does not mean these emotions do not affect interaction; rather, they influence interactions in an unvoiced and unarticulated way. Often, children know far more than adults realize. A 3-year-old who was asked why her mother was crying, answered: 'Because Mummy is sick again.' She had not been told, and in the absence of verbal input made sense of…[continue]

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