Educational and grief interventions for long QT syndrome families

Intervention Strategy for Grief

Long QT syndrome is a congenital that can result in sudden arrhythmia death syndrome (SADS), where sudden death occurs as a result of cardiac arrest. Although rare, deaths from SADS, including those attributed to long QT syndrome, are not accompanied with any anatomic abnormality, which can make prediction and prevention very difficult (Meyer, Mehdirad, Salem, Kulikowska, Kulikowski, & Jamry, 2003). Long QT syndrome is characterized by arrhythmias that are associated with prolongation of the electrocardiographic QT interval, and it is also associated with hereditary genetic defects that affect the cardiac ion channels.

Since it is mostly asymptomatic, the presence of long QT syndrome often goes undetected until it is too late, and death has occurred. When there is an awareness of the presence of the disorder, some preventative measures can be taken, but there is still a greatly increased risk of early death associated with the syndrome. Family members, such as parents, of children diagnosed with long QT syndrome must be appropriately educated regarding the disorder and the risks associated with it. Furthermore, since there is a high risk of death associated with the syndrome, it is important that strategies be in place to aid parents in psychologically processing loss and grief.

To illustrate the educational techniques that are effective for family members of those diagnosed with long QT syndrome, a case study involving a 32-year-old mother of children diagnosed with the syndrome will be investigated. Suggestions for interventions regarding education on long QT syndrome, as well as strategies for dealing with loss and grief will be discussed.

Case Study

The case study presented by Firth and Hurst (2005) details a 32-year-old woman who is the mother of two children who have been diagnosed with long QT syndrome. The children have experienced a few hospitalizations already, and it has been determined by physicians that pacemakers will be implanted in attempts to increase the children's chances for survival. The children are school-aged, so it of the utmost importance that teachers and administrators at the school be made aware of the syndrome, and receive some education regarding its etiology, symptoms, and what to do in case of an emergency. It is also important that the mother be available at all times in case of an emergency. Therefore, it is necessary that the workplace of the mother also has an awareness of the disorder so that they are sensitive and accommodative to the needs of the mother.

It is of the utmost importance that all people involved in the well-being of the children fully understand what long QT syndrome entails and what steps can be taken to ensure health of the children and minimize the risk of sudden death.

It is also important that interventions dealing with grief be made available for the mother if she suffers a loss of the children. The following is a discussion regarding educational interventions covering explanations of long QT syndrome, as well as interventions concerning loss and grief.

Interventions concerning loss and grief

There is a great risk of sudden death for the children in the case study that have been diagnosed with long QT syndrome. Therefore it is important that resources be made available to help the mother if her children die suddenly as a result of the disorder. There are several options available to assist individuals in the process of bereavement. The focus in the present discussion will be on strategies for grief management that involve guided imagery and visualization techniques.

There has been an increasingly large body of literature indicating the effectiveness of guided imagery as an intervention for numerous physical, mental, and emotional ailments, including grief. Guided imagery allows clients to connect with their internal cognitive, affective and somatic resources, which may not be accessible through other conscious means (Utay & Miller, 2006). The goal of guided imagery therapy is to facilitate awareness of certain imagery present within the client, and to guide clients in the usage of this imagery in order to heal (Utay & Miller, 2006). Guided imagery can be used as an effective intervention with several intentions. The goal involved in guided imagery for bereavement intervention would be to visualize alternative outcomes and reactions to particular situations in order to promote healthy responses, emotions, and behaviors.

Utay and Miller (2006) described a study in which researchers observed over 100 individuals with unresolved grief reactions. There were three phases of treatment employed with these individuals. The first stage of treatment involved cognitive structuring for the decision to grieve again and for procedure clarification. The second stage involved guided imagery for reliving, revising, and revisiting the scenes at which the loss occurred. The third and final stage involved future-oriented identity reconstruction. The researchers reported that the reliving of the event through guided imagery effectively changed the client's view of reality, and furthermore helped along their grief resolution (Melges & DeMaso (1980), as cited by Utay & Miller, 2006). Moreover, Guided imagery has been established as a versatile and effective intervention.

The importance in assisting the children's mother with the grief process lies in the fact that bereavement is associated with increased risk of morbidity and mortality, and it is important to establish interventions that protect the bereaved from suffering that lasts in severe health impairment (Stroebe, Schut & Stroebe, 2005). Intervention programs that assist the bereaved in confronting and expressing intense emotions have been considered very effective. However, this disclosure of emotions may not be enough. For instance, a study by Stroebe et al. (2005) demonstrated that expressing and sharing emotions did not significantly facilitate adjustment to loss among the bereaved. Furthermore, a deeper, more intense intervention that focuses on processes within the subconscious, like guided imagery, may be more effective.

Intervention strategies must recognize the importance of experiencing a normal grief process. All people who experience loss need to experience a period of grief, including stages of psychological adjustment that can last sometime. Before intervention, it may be beneficial for clinicians to allow for time for the individual to have a grieving period, in which emotions are experienced and run their course. Intervention too early may interrupt this normal healing process and cause further emotional problems in the long-run (Schut & Stroebe, 2005).

After the bereaved person has had a period of time with the grief process, it may be recommended that they join a grief resolution group (Joffrion & Douglas, 1994). This type of group may aid in healing through the development of self-transcendence. Effectively, self-transcendence involves the ability to extend one's self beyond personal concerns at hand and reach out to others without sacrificing one's sense of self. This process results in a broadening of perspectives, purposes and activities in the bereaved person's life. Guided imagery could play an integral role in the development of self-transcendence, and furthermore enhance grief resolution.

Moreover, it is of the utmost importance that an intervention be planned and implemented to aid the mother in the case study with grief resolution in the case of sudden death for her children due to long QT syndrome. The following outlines a multi-stage therapeutic intervention involving guided imagery:

Assist the mother with recognizing the importance of the grief process. Allow her to experience all of the emotions associated with loss, and give her time to process here experiences. It must be ensured that she feels socially supported, and that she has someone to talk to when she requires it.

After sometime with the normal bereavement process, assess her level of grief resolution. At this time it may be appropriate to offer her an intervention such as perceptual reconstruction (Gravitz, 2001). This intervention strategy involves a conscious shift in focus from memories of the death and dying process to more positive memories involving the life of the individual that was lost. Perceptual reconstruction involves a hypnosis-based, imagery-focused strategy that replaces disturbing images that are detrimental to the grief resolution process with hypnotically reconstructed positive memories. Research has demonstrated that this hypnotic strategy is effective in the treatment of inordinate grief, and that the restructure images were maintained and only became stronger over time after the therapeutic session (Gravitz, 2001).

After therapeutic intervention with guided imagery, it may be recommended that the individual join a bereavement support group that is focused on positive outcomes from the grief resolution process, and not focused on the negative experiences associated with bereavement