Journal Scan: Complicated Grief
Corinn Johnson, B.S

Editor's Note: The Journal Scan column is designed to share information from professional journals that might be useful to The Baddour Center's staff and families. The citation for this quarter's article is as follows: Dodd, P., Guerin, S., McEvoy, J., Buckley, S., Tyrrell, J., & Hillery, J. (2008). A study of complicated grief symptoms in people with intellectual disabilities. Journal of Intellectual Disability Research, 52 (5), 415425.

While the death of a family member is something that no one likes to think about; it is regrettably something that everyone, including our residents, must deal with at some point in life. It is important to have an idea of how grief may affect our residents. Especially since we want to inform them of losses and include them in ritual involvement in ways that would be most beneficial for them.

Studies have examined the grief reactions among individuals with intellectual disabilities and have found most to be similar to what those of typical intelligence experience. However, reactions may be prolonged or delayed, complicated by the reactions of those around them, and accompanied by an increase in challenging behaviors and a deterioration in overall mental health. This particular study wanted to look more specifically at the events that surround symptoms of complicated grief.

Complicated grief involves an individual experiencing certain symptoms for a prolonged period of time, beyond what would be considered ‘normal' or adaptive for the person. There are two types of symptoms involved in complicated grief: traumatic grief symptoms and separation distress symptoms. Traumatic grief symptoms include shock, anger, feelings of disbelief, finding it hard to trust people, detachment from others, numbness/not feeling anything, and experiencing physical or pain symptoms similar to those of the deceased. Separation distress symptoms include longing and searching for the deceased, loneliness, and preoccupation with thoughts of the deceased.

The researchers in this study recruited individuals from two agencies that provided residential The researchers in this study recruited individuals from two agencies that provided residential and day services to people with intellectual disabilities. Seventysix residents with mild to moderate intellectual disabilities took part in the study. Because grief symptoms are often difficult to distinguish from behavioral problems, the researchers first had to see if their measures could distinguish between those who had suffered a loss and those who had not. Half of the residents (38 individuals) had experienced the loss of a parent within two years of the study and the other half (38 individuals) had not. The two groups were matched for demographic characteristics such as gender, approximate age, and level of disability. Residents' staff filled out questionnaires that examined complicated grief symptoms, information about the parental bereavement (level of prior contact, how the individual was informed about the death, level of support before and after the bereavement, and level of participation in bereavement rituals), and an index of social competence.

The researchers found that the bereaved group did indeed experience the constellation of symptoms they were identifying as complicated grief more frequently than did individuals in the comparison group. Eightyseven percent of the comparison group had no symptoms at all while 34% of the bereaved group had ten or more complicated grief symptoms. When examining the different types of complicated grief symptoms, the bereaved group experienced significantly more symptoms overall, significantly more separation distress symptoms and significantly more traumatic grief symptoms. The authors felt that it was interesting to note that separation distress symptoms (longing and searching for the deceased, loneliness, and preoccupation with thoughts of the deceased) were experienced the most.

The last interesting finding reported in this study was that greater involvement in bereavement rituals following death was predictive of more symptoms of complicated grief. Many families struggle with the questions of if and how their family members with intellectual disabilities should participate in rituals. A substantial body of research indicates the opposite of this finding; participating in the rituals of life and death are psychologically healthy for this population. So, what do we make of this discrepancy? First, the findings are based on a small number of people. Thirtyeight had experienced a death, and at least 36 of them participated in rituals; therefore the experiences of two people are being used to represent people who do not participate in rituals. There could have been something different about those two people (maybe they didn't go to the funeral because they weren't as close with their families, for example, and so they felt less grief). Because the authors don't say much about how they defined "participation," we are forced to assume they are saying that the number of rituals participated in is related to higher dysfunction. But, they don't tell us how many is "too many," or if one type of ritual is more likely to cause problems than another. In short, it is very possible that this finding is a statistical anomaly. In fact, the authors admit as much. Followup analysis indicated that participation in rituals was only responsible for about 2025% of the complicated grief symptoms. Still, 2025% may worry some families and make us think we should shelter the residents from rituals of death. The authors offer another interpretation, though. Perhaps these few people who got worse were unprepared for rituals. They offered some suggestions about assisting individuals with intellectual disabilities to deal with their grief:

• Residents may need prior exposure to rituals before they participate in them. This means explaining and educating them about seeing the body, attending the funeral, the body being lowered into the ground, and other things they would expect to see during the rituals.
• Residents may need a better understanding of the rituals: explain to them why the rituals occur and what role they will play during the rituals.
• Very few of the residents in the study (around 10%) received bereavement counseling. Participating in groups such as the Grief Groups the Baddour Center offers may help residents cope with and understand their loss. Residents also participate in their own, individually made rituals (something they choose so it is familiar to and important to them) that they share with other residents who have experienced similar losses.

Losing a loved one is tough for anyone. The findings of this study suggest that our residents may experience some additional symptoms and experience grief for a longer amount of time than others might. Decisions regarding the level of and type of involvement need to be made on an individualized basis. However, explaining, educating, and helping the residents understand their loss is the best thing we can do to help them during their difficult times.