Shannon L. Hill, Carly Gardner, and Corinn N. Johnson, The Baddour Center
Grief therapy models for people with intellectual disabilities are not widely available. The current article describes a pilot study conducted with 27 people who have intellectual disabilities. Participants were diverse in their grief histories, with a wide array of losses and time since loss. The curriculum used is described as well as the assessment procedures and considerations. Outcome information is preliminary but indicates the group design has promise and warrants further research.
Although people who have intellectual disabilities have been described as being particularly susceptible to loss experiences that might lead to grief (cf., Kauffman, 2005), few published studies have examined their grief reactions and coping strategies. The research that is available seems to indicate that grief reactions among this population are largely similar to what is experienced by those of typical intelligence; however, their reactions may be prolonged or delayed, complicated by the reactions of those around them, and may be accompanied by maladaptive behaviors such as aggression, withdrawal, somatic complaints, and self-injury (thought these are seen in the general population as well). Research also reveals that variables such as participation in ritual events, familial response, verbal ability, and processing deficits may affect their experience (Clements, Foch-New, & Faulkner, 2004; Dodd, Dowling, & Hollins, 2005; McHale & Carey, 2002; Stoddart, Burke, & Temple, 2002; Summers & Witts, 2003). Despite this, there are few published models of grief therapy for this group. The current study provides the results of a preliminary investigation of the usefulness of a grief group therapy model designed for people with mild to moderate intellectual disabilities. Considerations for outcome measurement are discussed, as well.
A model of grief therapy was developed and implemented as a part of clinical services at a private, non-profit, campus-based residential and vocational service provider located in the southeastern United States. Most of the participants resided in group homes or supervised apartments, although two were living with family members. All participants worked in the campus-based sheltered workshop. Grief and trauma histories were taken upon enrollment from participants and, when possible, family informants. Self-assessments of coping were taken before and after group participation, and post-group questionnaires were sent out to assess the benefits/drawbacks to participating in the groups. Twenty-seven of the 33 participants agreed to the use of their data for the purposes of this study.
Participants were referred by their case managers, work supervisors, direct support professionals, or family members. Self-referrals also were accepted. To the extent possible, groups were matched on Verbal IQ scores. This criterion was selected in order to have groups that were as homogenous as possible in expressive communication skills and conceptual understanding of the subject matter. Work schedules were an unintended, but necessary grouping factor, as well. Grief time ranged from less than one month to over five years. Participants grieved many different relationship losses, including friends, family members, staff members, and pets. Demographic data regarding the 27 research participants are summarized in Table 1. Characteristics of the groups (n = 8) are summarized in Table 2. Although previous research indicates a correlation between problematic behavior and grief reactions, our subject pool had a low baseline rate of such problems. This may have been because the groups were open to anyone who showed interest, rather than limiting it to people who appeared to have complicated grief. It also may have been because the participants were able to verbally communicate about their feelings. Since baseline rates of behavioral issues were low, these variables were not tracked as outcome measures.
Mean Age 42.3346.8345.33
Borderline Intellectual Functioning448
Mild Intellectual Disability51318
Moderate Intellectual Disability011
Axis I Diagnoses
Impulse Control Disorders213
Axis III Disorders
Table 2GroupNMean VIQMean Age% Male
The curriculum was developed by the researchers for this study and is designed for use with people who have mild to moderate intellectual disabilities. It incorporates psychoeducation with principles of behavioral psychology, group process, and art therapy. Psychoeducational topics include the life cycle, communication skills, social skills, and coping skills. Although the focus tended to be on the grief that follows a death, attention was also paid to issues of grief that surround other types of losses (e.g., separation, moving, or divorce). The sessions are tied together by the use of storytelling, a storyboard, and memory books. The storyboard is a poster display of the group's impressions of the concepts of birth, life, death, afterlife, and memories. Memory books are individualized scrapbooks of the relationship the group participant has with the person lost, as current emphasis in grief work is on the emphasis of a continuing relationship (that is, relationships continue in a different form after a loved one dies). Groups culminate with a memorial service designed and carried out by the group members. The curriculum is designed to be run in six sessions, followed by the ceremony. Some of the group leaders were unable to move through the curriculum at that pace, though, and extended into seven or eight sessions. This will be discussed further in the recommendations section. An outline of the content appears in Table 3.
[Insert Table 3 here]
A subjective loss assessment (SLA) was created by the research team to assess participants' perceptions of their own ability to cope with loss. It consists of nine questions with Likert ratings. Questions assess the person's perception of how well they are coping with their loss, behavioral indicators of grief, and predictions about future coping. The instrument was administered during the first group session, with group leaders reading the questions aloud and explaining the rating system to the participants. One-on-one assistance was provided if necessary. The instrument was re-administered within two weeks of the participant completing the group, with the researchers again providing one-to-one assistance when necessary.
A follow-up questionnaire was administered to all participants still utilizing agency services and their case managers six months after all groups had been completed. The questionnaire is designed to assess group satisfaction and utility and allows liberal room for narrative comments (see Table 4).
[Insert Table 4 here]
Results and Discussion
Subjective Loss Assessments
Self-ratings increased an average of 2.44 points after group participation. The change was not statistically significant, but the score change distribution shows a wide range (-8 to 13). In order to better understand the scores, improvers (those whose score increased by two or more points) were compared to those who declined (those whose score decreased by two or more points) and to those who showed no change. Comparisons were made regarding Verbal IQ, baseline scores, and time since loss.
Although Verbal IQ does not appear to have influenced improvement in self-ratings overall, it should be noted that three of the five participants who had a VIQ of 60 or below had declining scores and made up 50% of the decliners group. Whether this is an assessment flaw or an indication that the group experience worsened their symptoms is worth consideration. It is possible that, despite the assistance given, some group members did not understand the questions or how to use a Likert scale. The group leaders indicated that, although they each seemed to enjoy the group experience, two of the three did not seem to derive any particular intellectual or emotional benefit from it. The third person did seem to gain an emotional benefit, but tended to respond rapidly to the questions, so may not have fully understood the rating system.
Not surprisingly, decliners gave themselves the highest pre-test scores of the three groups, whereas improvers had the lowest pre-test scores. People who scored below 25 (of a possible score of 41) were likely to show improvement, whereas people who scored higher than 25 were likely to show a decline or no change in self-assessment ratings. Of the 15 people who started out with baseline scores of 25 or above, therapists thought that eight of them derived some intellectual or emotional benefit from participating, five had resolved their grief issues well without the group, four needed more support than this group was designed to give, and three didn't seem to understand. Size of the score drop did not predict therapist impressions. Taken together, this information suggests that the use of these Likert-type self-ratings was not valid for use with our population and another method of capturing progress must be developed.
The amount of time that has passed since the loss is a potentially critical factor. Nearly half the sample had experienced a loss in the year prior to beginning the group experience. Family members understandably expressed questions about the correct timing of the intervention. For those who had experienced a death within a few months of beginning the group, there were questions about readiness. On the other hand, for people who had experienced deaths more than five years prior, there were concerns about "digging things up." Since the self-rating system was ultimately judged invalid, we are left only with therapist impressions and information about early termination. Three participants terminated early. One person's loss had occurred many years before, and she did not want to "dig it all up." The other two were dropped from the group because they were unwilling to admit that their loved one was dead. One had lost her mother three months prior to the beginning of the group; the other had lost both parents in a nine-month time span. Both were placed on a waiting list to try the group again in the future.
Two other participants were judged by the therapists as possibly experiencing more distress than comfort by the group. One had experienced the loss of his mother three months prior. He had erratic attendance and participated in the craft exercises but did not participate in discussion. He was reminded on several occasions that it was his choice to participate or not, and he continued to come. The other person had experienced the loss of his father ten years before, and at the time of his group participation he was experiencing symptoms of paranoia and obsessive thinking about events that co-occurred with the loss of his father. He sincerely seemed to enjoy the group and was responsive to therapist redirection to relevant topics in session. However, the therapist was concerned that the group might have provided too many opportunities for him to ruminate over these things.
Taken together, the group of people for whom participation was potentially counterproductive represented the extremes (two whose losses were more than 5 years ago and three whose losses had occurred recently). However, half the group members fell into one of those categories and the majority experienced no adverse effects. One point to consider, though, is the relationship of verbal skills to time. The three whose losses were recent had comparatively low communication skills and had all lost the person they felt most attached to in the world. Therefore, it is worth investigating whether people who have difficulties with verbal communication need more time before they are ready to process such traumatic losses in a group such as this.
Participant ratings were gathered orally and resulted in a 100% completion rate; case managers were sent the questionnaire and asked to return them; therefore some questions were left blank. Also, some of the participants had a change in case manager after the groups had ended, so the new case manager was unable to provide information about observed changes. Data is summarized in Table 5.
Table 5RespondentEnjoyed GroupFeel More PeacefulMood ChangeUpsetting Experiences
SelfYes = 23No = 3Yes = 22No = 4Happier = 8Same = 14Less Happy = 4 Yes = 8No = 16
InformantYes = 18No = 2Yes = 15No = 1Happier = 7Same = 9Less Happy = 0Yes = 4No = 15
* n = 26; one person was no longer receiving services at follow-up.
For people who had reported changes in mood or peacefulness, a follow-up question asked whether there had been other events that affected this change. Only four participants indicated other influences; two mentioned relationship changes that had improved their happiness and two mentioned additional losses that had occurred since the group concluded, leading to higher distress.
Because yes/no ratings are so susceptible to positive response bias in this population, we were particularly interested in the content of participants' narrative responses. The responses collected from the participants were categorized in terms of specificity, and as shown in Table 6, comments were evenly split between the general and the specific regarding the group's helpfulness. Because judging the difference between general and specific can be subjective, we have underlined the portion of each response that we judged to be specific.
Table 6Outcome EvaluationSpecific CommentsGeneral Comments
PositiveIt was very uplifting. Once your loved one's been gone 2 or 3 years, it kind of dies down a little. I really enjoyed it.I thought it was a nice group.
I liked coming to sympathy group because it helped me deal with my loss, and for other people who have had people die and weren't able to handle it, I am able to see how that person is feeling and talk to them because it happened to me.Group was good, valuable, helpful
It helped that I finished the group before I lost my mom.I feel more at peace. I'm recovering slowly, letting my happiness out and my sadness back.
I feel more willing to talk about things.I had fun in the group! I love groups, I enjoyed it a lot.
Talking about the loss upset me, but it was good. I had a good time in it talking about it.I like it. I want to do it again.
I think it helped to accept x's leaving and I was having a really hard time with that. While stuff upset me, talking about it helped.
NegativeToo personal, that is why I don't like it anymoreBlood pressure went up!
I wish they could help me more. I'm still having trouble sleeping at night.Sometimes sad
Summary and Recommendations
Research on psychotherapy with people who have intellectual disabilities has long been noted to be difficult, considering the problems with self and proxy-report data. As such, outcomes analysis is often limited to behavioral indicators and therapist impressions. Because our participants exhibited a low rate of behavioral complications to begin with, this factor did not prove to be sensitive to the effects of our intervention. The Likert-rating system devised to capture self-reported indicators of distress also proved to be subject to validity threats (random responding and attempts to give socially desirable responses). Therefore, we base our recommendations on observations made during group sessions and exit interviews conducted with the participants about ways in which the group experience was or was not helpful to them.
The curriculum as originally designed kept the participants interested and engaged and was easily adapted to various ability levels. However, it did seem to proceed at too fast a pace for some groups, and it was necessary to extend it into more sessions. As a result, we revised the curriculum into an eight-session experience. We also reduced and streamlined some of the activities. An outline of the revised curriculum is offered as Table 3.
Because our sample size is small, it is too early to make recommendations about inclusion or exclusion criteria. Directions for future research include the relationship between verbal skills and time. Although some people with less developed verbal skills navigated the curriculum well, three such participants, whose losses were significant and recent, did not appear to be ready for this intervention.
Additionally, we were struck by the frequent impression that participants, in completing their baseline self-ratings, were reporting symptoms they thought they should be experiencing as a grief-stricken person. In addition to the problems with conceptual understanding of a Likert-system, this phenomenon rendered our objective assessment plan useless. For future groups, our plan is to administer an assessment of beliefs about appropriate grieving behaviors, coupled with questions about each participant's own symptoms of grief, in a multiple-choice format rather than a ratings scale.
Results of the exit interviews indicated that, although most people did categorize the groups as helpful and accomplishing what they set out to accomplish, some of the participants were willing and able to give some concrete examples of why they did or did not like the groups. Case Manager reports, by contrast, were less specific about how the groups did or did not help the participant. This might be attributed to the time delay or just the fact that the majority of participants were not exhibiting extreme complications prior to participation in the groups. In future sessions we will discontinue the proxy assessments unless the person is experiencing behavioral complications prior to participation.
Clements, P.T., Focht-New, G., & Faulkner, M.J. (2004). Grief in the shadows: Exploring loss and bereavement in people with developmental disabilities. Issues in Mental Health Nursing, 25, 799-808.
Dodd, P., Dowling, S., & Hollins, S. (2005). A review of the emotional, psychological, and behavioral responses to bereavement in people with intellectual disabilities. Journal of Intellectual Disability Research, 49(7), 537-543.
Kauffman, J. (2005). Guidebook on helping people with mental retardation mourn. Amityville, NY: Baywood Publishing.
McHale, R. & Carey, S. (2002). An investigation of the effects of bereavement on mental health and challenging behavior in adults with learning disability. British Journal of Learning Disabilities, 30, 113-117.
Stoddart, K.P., Burke, L., & Temple, V. (2002). Outcome evaluation of bereavement groups for adults with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 15, 28-35.
Summers, S.J. & Witts, P. (2003). Psychological intervention for people with learning disabilities who have experienced bereavement: A case study illustration. British Journal of Learning Disabilities, 31, 37-41.
For further information, contact Dr. Hill at: firstname.lastname@example.org
Life and Loss
Introduction to the Rules & Structure of Group
Discussion - What is loss? What constitutes a loss? The introduction of the story board outlining the process of life and death and the personal memory books to honor the person they've lost. After explanation, group members work on a cover for their memory books while taking turns introducing themselves and why they are here, with a story about what made the person they lost so special, if they desire.
Discussion - the beginnings of life, needs of infants, why people and animals bring children into the world; different kinds of emotions that occur when life begins.
Story Board - Participants find pictures of early life to place on the board, as well as identify emotion cards that represent feelings they have experienced at the birth of people in their lives, or about birth and babies in general.
Memory Books - Participants are asked about the beginning of their relationship with the deceased person and to make a page that honors that meeting.
Discussion - Use emotion cards/posters to discuss different emotions and how the same situation might bring about different emotions at different times. For advanced groups, may concentrate on subtle distinctions (angry vs. irritated). Less advanced groups may concentrate on the basic mad, sad, glad, and worried.
Story Board- Participants learn to identify emotions in others and themselves (what do they look like, how do they feel, what do they make you do, etc). Participants will attach emotion cards to story board and be encouraged to tell a story about their loved one's life using multiple emotions.
Memory Books- Participants will make a feelings page about the life of the person they've lost. I feel _________ because ______________. Non-writers may draw feelings faces and find or draw pictures to represent the reasons, or may be helped to write or spell the words they'd like to say.
Discussion - What is important about life? Open discussion about the things people want to accomplish in life and how each of us is different. Introduce the concept of storytelling as a way of helping ourselves and others (how talking about things clears our minds and opens our hearts).
Story Board- Pictures or words will be placed under the heading illustrating the story they told and a picture of the emotions that it evoked will be placed beside the picture/word.
Memory Books- Participants will use magazine clippings, photos, drawings, etc. to illustrate one or more of their favorite stories about the person and the relationship he or she had with the lost person. If the person is struggling with capturing a whole story, he or she may just use pictures that represent the memory. The therapist or other group members can help to label the pictures if needed.
Dedication/Memory Ceremony- Discuss the importance of the dedication ceremony and what the participants would like it to symbolize.
Understanding Death and Supporting Each Other
Discussion - Why people and animals have to die; what it means to die; how it might feel to die; what makes death easier or harder. How survivors feel when a loved one dies. Review of storytelling concepts and instruction on how to be an active listener .
Experiential Exercise in Active Listening - Participants pair up and tell each other the story of how their loved ones died. If necessary, one pair can perform this exercise at a time. Therapists provide instruction as needed in listening and storytelling skills.
Memory Books- Participants may write letters to the person they lost or draw/paste pictures that show what they miss and how they feel.
Story Board- Add pictures or words that show how the participants felt when the person died, and ways other people supported them.
Dedication Ceremony - Preliminary plans for the type of ceremony and activities. Examples include traditional church services, poetry readings, tree plantings, balloon releases, etc.).
Discussion - How emotions rise and fall after someone we love dies; how different people express grief in different ways. Participants will learn about and practice a variety of positive coping techniques, such as Progressive Muscle Relaxation, Diaphragmatic Breathing, and using preferred activities.
Story Board- Add pictures or words of all the emotions people might experience after a loved one dies and things they can do to cope with those emotions.
Memory Books- Add a page depicting the participant's coping strategies and how the relationship with the individual is changing (not ending) since their passing.
Dedication Ceremony - Begin to plan who will be responsible for what, gather materials, make assignments for selecting readings, writing poems or eulogies, choosing music, etc.
Continuing the Relationship & Expressing our Needs
Discussion - Group members share their beliefs about the afterlife.
Story Board - Group members place or draw pictures or record words or phrases that represent what the afterlife will be like for them.
Memory Books - Group members make pages that demonstrate what life after death is probably like for the person they've lost, and how they plan to continue their relationship with the person.
Dedication Ceremony- Will discuss and finalize activities for dedication ceremony, providing time to practice any presentations or complete any writings.
Dedication and Ceremony
Participants will have an opportunity to complete story boards and memory books
Participants will hold a ceremony, planned by themselves, to dedicate memory books and acknowledge the transition of their relationship with the lost individual
*Requests for the full curriculum or assessment tools may be directed to the lead author.
We'd like to know how you felt about the grief groups you attended. Please share your thoughts below:
1. Did you like coming to group? (Yes/No)
2. Do you feel more at peace about your loss? (Yes/No)
3. Did anything about the group ever upset you? (Yes/No)
4. In general, do you feel more happy, less happy, or about the same as before the group? (Please circle the underlined phrase that describes how you feel).
4a.(If you answered "more happy" or "less happy" to #4): Has anything else happened in your life that might be causing any of these changes?