Looking Within and Reaching Out

Introduction

Palliative and hospice care professionals need to have knowledge of many populations to work effectively in diverse communities. The authors, both experienced hospice social workers and faculty at a school of social work, have seen a growing need for increased knowledge about one particular population. Both authors have provided grief education and support to adults with intellectual disabilities (IDs). The first author has provided several years of grief counseling to these adults.

Who are adults with ID? The American Association of Intellectual and Developmental Disabilities defined intellectual disability as “a disability characterized by significant limitations both in intellectual functioning and in adaptive behavior, which covers many everyday social and practical skills. This disability originates before the age of 18.” ¹ Medical technology and improved living conditions have expanded life expectancy for people with ID. ^2,3 In 1930, 9 years was the limit of life expectancy for someone with Down syndrome (one form of ID). Life expectancy for someone with Down syndrome is currently reported to be 62 years. The life span of a person with ID and/or other developmental disability classifications other than Down syndrome is 72 years, up from the 20 years ³ expected in 1930. In the past, parents outlived their adult children with ID. Now the children outlive the parents.^4(p2),5(p3) The shift in life expectancy of people with ID may translate to a change in living conditions for them once their parents die. In the United States, “there are an estimated 4.8 million children and adults with intellectual and developmental disabilities living with family caregivers, in supervised residential settings, or in their own or a spouse’s or other relative’s household.”^6(p2) Other data available provide a breakdown of living arrangements for individuals with ID and developmental disabilities (DD).

In 2009, 599,152 people with ID/DD received publicly funded supports while living in the home of a family member, 122,088 while living in homes of their own, and 40,967 while living in host family or foster care setting (Lakin, Larson, Salmi, & Webster, 2010). In 2009, only 276,460 people with ID/DD lived in congregate care settings and 57% of those lived with 6 or fewer people.^7(p3)

As relational beings, humans cannot escape the experience of loss. People with IDs are members of families, neighborhoods, schools, churches, and offices. They form relationships, live through inevitable life changes, experience the aging process and losses of people, pets, homes, jobs, abilities, and friendships. They face the death of others and eventually will face their own death.

Individuals with ID can become included in hospice and palliative care as family members, friends, and sometimes caregivers of hospice clients. Living in relationship, like all others, they face the loss of family, staff, coworkers, and friends in nonhospice-related losses. Hospices often also reach out to the general community providing bereavement services. Bereavement support is not reimbursed by third-party payers. Hospices often provide grief counseling not just to families, but to others who are struggling with loss in the community.

As individuals with ID face bereavement, the community and their caregivers are ill-prepared to assist them. ⁸ Higgins ⁹ noted unsubstantiated assumptions are made that if adults with ID grieve, they go through the same grieving process as the general population. Persons with ID often have communication and behavioral differences that make the identification of healthy versus unhealthy grief even more challenging than in persons without a disability. Death of a family member has been documented as a trigger for symptoms of psychopathology and cause for crisis intervention for individuals with ID. ^{10 -14} Grant ¹⁵ found that deaths in the family “were talked of as having profound, long-lasting but not always well understood effects on the person with a mental handicap.”^14(p47) Kauffman ¹⁶ blamed the overall dehumanization of people with DD for historical oversight in acknowledging grief in this population. Van Dyke ¹⁷ stated, “In my experience of counseling people with disabilities who lose their only parent, it is not the finality of the loss, but the aftereffects of poor planning or no planning whatsoever that leave the deepest emotional scars.”^17(p38) Gradually, social scientists and providers of care have begun to acknowledge that depth of human feeling exists for those whose cognitive abilities fall below a standard score. Little work has been completed on adults with developmental disability and the bereavement experience.

This article will describe data from a 2007 study ¹⁸ designed to explore how adults with ID (IQ less than 70) experienced grief. The researcher believed that adults with ID would have increased cognitive struggles to grasp abstract concepts such as death and grief, concepts even typical adults find difficult to understand. The researcher selected this group because she believed that IQ challenges may complicate the bereavement journey and little was known about their experiences with grief.

The study was completed as part of an unfunded doctoral dissertation. The first author originally designed the study with involvement of 2 institutional review boards (IRBs). The state and university IRBs assessed the study risks and imposed time lines. The researcher’s access to clients with ID was limited due to her student status. These elements, in addition to the lack of funding, created challenges. The first author decided to compromise and interview bereavement counselors who had provided grief counseling to adults with ID. This compromise reduced the barriers to study completion. The study was redesigned to explore the experience of bereavement for adults with ID as perceived by grief counselors.

Methods

To explore the issue of bereavement and ID, the first author conducted qualitative research interviewing hospice-affiliated bereavement counselors. Why qualitative research? There are 2 compelling schools of thought. The first is that not enough is known about persons with ID and bereavement, and qualitative research provides a base. ¹⁹ The second is that grief that results from bereavement is not an entity that can be objectively measured and explained by quantitative methods. ²⁰

The researcher developed semistructured interview questions based on the gaps in knowledge about bereavement and adults with ID. The interview data were analyzed using grounded theory methodology. Grounded theory, as developed by Glaser and Strauss, ²¹ works to derive theory from the data as they are collected from participants. The researcher found explanations of the perceived experiences of bereaved adults with ID through analysis of the interview data. The analysis process included exploring the depth of the emerging concepts in the data and how they were interrelated. ²² Charmaz ²³ described 4 phases of implementing grounded theory: creating and refining the research, data, and the collection questions; raising terms of concepts; asking more conceptual questions on a generic level; and making further discoveries and clarifying concepts through writing and rewriting. The researcher examined the data for concepts. She then reviewed concepts looking for repeated themes and analyzed the relationships between theoretical categories.

Instruments

Semistructured interview questions ranged from questions about reasons their clients with ID had been referred, details about the client’s death notification and involvement in grief rituals, how the clients showed their grief, additional losses, comparisons with other grief clients, interventions used, what worked, and what got in the way of the client coping with grief.

Procedure

After phone contact and explanation of the study, consents were sent to a total of 26 bereavement counselors. Consents were received back from 23 counselors, all affiliated with a hospice bereavement program. After a participant agreed to be interviewed, consents were mailed. When the consent was returned, the researcher made a phone call to set up an interview appointment. The researcher collected all the interview data over the phone, except for 1 face-to-face interview. The researcher taped the interviews and they were transcribed by a professional typist. The first author then saved the transcripts into the ATLAS.ti qualitative software program. The transcripts were then sent to the participants to fact check. No corrections were made. The ATLAS.ti software was utilized to organize the data, write memos, and document codes and relationships of the data. The researcher had the responsibility to interpret and analyze the data using grounded theory.

The researcher analyzed the data on an ongoing basis. To begin the process, the researcher made notes about the data, using the memo function of ATLAS.ti. Memos included questions the data raised for the researcher and the researcher’s own reactions and observations. The researcher immersed herself into the data for long periods of time and then arranged for time away from the data to allow ideas to “simmer” and rise to the top of consciousness while in the midst of other activities.

After initial reading of the data, the researcher went back to the text of the interviews and started coding some of the words and phrases, looking for meaning within the data. Moving through the text, the researcher’s next job was to reduce the number of codes identified and find themes. Labels were given and categories created. Connally ²⁴ described this as the interpretive phase. “Axial coding” ²² is a procedure that was also used to help illustrate the dimensions of the categories and how the categories might relate to each other. This process involved looking for subcategories, as well. As Charmaz ²³ stated what is being done is “raising terms to concepts.”^(p1163) Raw codes were numerous. The researcher reorganized and reduced them for the purpose of identifying categories or themes. For instance, originally a code for “protection” was developed as well as a code for “protection versus preparation.” These codes were merged. A more specific code, “caregiver/staff discomfort” was broadened to “discomfort.” In the following section, the authors will describe specific findings.

Findings

Below is a summary of the conceptual categories of “Living Loss.” Using grounded theory methodology, the interview data coded as “history of loss,” “being protected,” and “being disregarded” formed the category Living Loss. The researcher analyzed the data supporting these codes to tell the counselors’ views of adults with ID growing up in a death- and grief-avoidant society. Participants noted that adults with ID often experienced loss of opportunities for careers, life goals, and financial stability. The data collected outlined the counselors’ perceptions of frustrations and obstacles many adults with ID face in processing their grief. The participants believed that an ID created obstacles for adults causing them to lose the privilege of information, full inclusion in decision making, and early preparation to any sort of loss or change. In Western society, ID has usually translated to dependence on others. If the adult with ID was in the care of others, the impact of the loss of a secure relationship may be downplayed or ignored due to caregiver discomfort or lack of knowledge. If the parent or caregiver died, the counselors described domino-affect secondary losses as being put into motion. The data described small social networks being drastically reduced when staff, family, or a friend died. For the client, social, recreational, resource losses accompanied the emotional aspects of loss. The data up to this point painted a picture of problems located outside the individual adult with ID. The participants stated that loss and change were inevitable. They insisted that those who are dependent on others, with small social circles must be carefully prepared for these losses. For the adults with ID discussed so far, the participants believed that they saw unintended consequences of loss heaped upon loss. In the following sections, examples of excerpts from the data Living Loss painted a picture of the counselors’ perceptions of the frustrations and obstacles many adults with ID faced in processing their grief. These challenges experienced by adults with ID included isolation, lack of information and understanding of death and grief, small support networks, and limited knowledge regarding coping skills.

Being Protected

Participants described many of the adults with ID as dependent on caregivers for daily needs of eating, dressing, toileting, and so on and decision making. Often these caregivers were presented as well intentioned but uninformed. There were some caregivers, for instance, who viewed adults with ID forever as children to be protected and shielded as noted in the literature. ²⁵ Sometimes rather than being helped to move forward with all their losses, the counselors explained that the attempts to protect and shield kept their clients with ID stuck in the same place of pain and loneliness. As the researcher analyzed the data it was clear and noted in a memo that those providing the care and guidance for bereaved adults with ID live in a society that avoided discussion of death and dying and any attendant display of deep feelings. Little has been done to educate about grief and loss issues for any of society’s members, disabled or nondisabled. In Western society, the label ID usually means dependence on others. If the adult with ID was in the care of well-meaning but ill-informed others, the result may be the urge to protect the person with ID by sharing little information about change, illness, and death. Lack of information and inclusion into discussions around life changes and death can result in avoidance of discussion of losses and the perhaps inadvertent silencing of grief.

The data showed that many unintended consequences emerged as the result of sometimes well-meant protective reactions. Parents and caregivers were perceived by participants as viewing adults with ID as vulnerable and the parents and caregivers were described as struggling with how much to share, educate, and involve them. It was noted that the protective strategies only complicated the bereavement experience for her clients with ID for one participant.

There is this more socially normal avoidance of talking to children and disabled people about death, and that was one of the big factors of why, I think, they had such difficult times. (Participant Chris)

Participants conveyed the need to include adults with ID into discussions around life and death.

Allowing someone to participate in it rather than having it happen to them would be a good start (Participant Nicole)

This one particular person was never told. They knew their father was in bed and the mother had said he was tired and when he passed, he was not there when [the son] came home, and the mother never said where he [the father] went. (Participant Pat)

One client’s family just simply didn’t inform her … just sort of did everything around her. So I can say clearly that that was one family. And then I actually met with her.  They put her in a workshop, a sheltered workshop, and I actually met her at the sheltered workshop, and I think the referral was actually from the workshop, as I think about it.  It was like Mom never showed up at home and they put her in a board and care and sent her to the workshop. And, of course, she just vapor locked. (Participant Marta)

Don’t feel like you’re protecting that person from it, because we can’t protect people from death, you know ... . So the best thing we can do is teach them how to cope with it, and in order to teach them how to cope with it, we have to be able to let them know what’s going on. Give them the information they need so that they can have what they need to cope with it. (Participant Amy)

Being Disregarded

Other times, standing silently on the sideline, the adult with ID was described as forgotten or disregarded as a part of the grief or change process. The researcher noted in a memo that to be disregarded means to be overlooked, to not be attended to, or to be not seen. Visibility means easy to be seen, recognized, or discerned. It would be difficult for the feelings of a person with ID to be regarded when no one really saw him or her or perceived what he or she was trying to communicate. Neglect in paying attention to or failure in making an effort toward understanding behavior could have marginalized attempts by the adult with ID to communicate deep feelings. Participants noted that caregivers seemed to find grief-related behaviors often puzzling or annoying. Caregivers often then misunderstood these behaviors. Behavior was often reported as being what was noticed, not the person’s feelings or humanity. Participants commented that at times caregivers assumed that the client with ID was “fine” if the client did not display any problematic behavior.

Being overlooked can be associated with discomfort, coping obstacles, as well as with loss. Loss was a deep vein, a major component, in the counselor’s view of the experience of bereavement for adults with ID. Being separate and becoming invisible were reflected in the data below.

In the ideal world for me, is that we just have a culture in which however you function, you’re out there in the world functioning at your level and that we don’t have a category for people and a specialness for people. I think it’s the special container that we put people with disabilities in that enhances much more grief around life challenges. (Participant Marta)

Other data excerpts illustrated the absence of regard given to an adult with ID.

In summary, the code “being disregarded” was related yet essentially a different entity when compared with the codes “being protected” and “history of loss.” Data labeled “being disregarded” contributed to the construction of the conceptual category, Living Loss.

Discussion

The data discussed here captured the voices of grief counselors talking about bereaved adults with ID. What they expressed was that for each human being loss needs to be recognized and grief must be honored. The counselors described the long histories of unrecognized losses and the unintended consequences of protecting people with ID by avoiding informing them or including them in change, loss, and death scenarios. The interview data depicted individuals with ID being so invisible that they are often disregarded in times of crisis and loss.

Two broad concerns, protection and disregard spoke to how lack of preparation of families and paid staff came to shape the bereavement experience of individuals with ID. It is hoped that through summarizing key points from the data around the conceptual category Living Loss the reader can then be helped to perceive and understand the impact of death and loss. Perhaps closer attention can then be paid to the recommendations for education of the community and helping professionals, especially in palliative and hospice care. The authors believe that there are many points to begin work. Early death and grief education is essential for families. Organizations need to improve caregiver training on these topics. Death and grief education needs to be added to higher education and personnel preparation programs in health, elementary and secondary education programs, and counseling and social work curriculum. Until major changes occur in these areas, however, palliative and hospice care providers will still be dealing with the end results of misinformation and misguided responses from a reactive stance.

As with all research, it is necessary to begin by discussing the limitations of the study and its findings. Since the study was completed as an unfunded student dissertation, the sample size was small. The participants in this study were limited to hospice-affiliated bereavement counselors. Grief counselors in this study reported consistently that working with adults with ID who had not experienced problems coping was the exception, not the norm. It needs to be pointed out that bereavement counselors generally see the clients who are not coping well with bereavement. In addition, the data were perceptions about the adults with ID, so the experience was filtered through the eyes and worlds of the participants and then further filtered by the researcher. 

Despite these limitations, the findings regarding Living Loss were congruent with the existing literature. Three main concepts formed the backbone of Living Loss: history of loss, being protected, and being disregarded. Each of these concepts is reflected in the sparse existing literature.

Looking to the loss literature, the data supported the impact of loss as described by Brown. ²⁶ The participating counselors noted the clients with ID had histories of loss of self-worth and social roles; loss of loved ones through death or staff moves; loss of home, neighborhoods, and possessions; and developmental losses such as their own aging, the aging of their parents, and the subsequent loss of parental ability to care for them. The data also supported the findings of Rando ²⁷ of secondary losses. The participants reported client moves to group homes; loss of family friends and the caregiving rituals and familiarity of their usual care. The data also echoed the findings of Dell’Aquila ²⁸ that “the social experience of being developmentally disabled does create a disadvantaged state from which to approach grief.”^(p108)  Most study participants noted that these losses were not acknowledged by caregivers. They also connected losses to the concept of disenfranchised grief. ²⁹ Study by McDaniel ³⁰ described individuals with ID as feeling that they had been left out of family experiences when someone was gravely ill. Feeling left out was reflected clearly in this study’s narratives about “partial inclusion” of adults with ID in family experiences. With hospice assistance, some adults with ID were reported to be fully included around the time of death and after. The authors found that the work of Oswin ³¹ provided a good opportunity for comparison of findings. She gathered data directly from adults with ID, as well as parents and caregivers. The first author’s and Oswin’s ³¹ studies both documented misguided efforts of caregivers to protect or distract.

In summary, when adults with ID came to the grief counselor for bereavement help, it became evident to the counselor that long histories of disenfranchised grief ²⁹ and unrecognized losses preceded the focal death loss. Societal disregard of persons with ID contributed to caregiver overlooking the impact of losses. In addition, participants described caregivers or guardians displaying protection behavior in times of loss. Small social circles can increase the impact of death of a loved one on an individual with ID. If these themes continue to be supported in other research findings, this has implications for palliative care and hospice workers. Professionals of all disciplines need education and training about death and grief issues for adults with ID and their families. Palliative care and hospice staff are on the front lines of identifying and legitimizing grief reactions. Education, support, and referrals should be provided as part of patient and family care. Mentoring, clinical supervision, and other means of education and training can assist helping professionals to see the commonalities between those with ID who are hurting and others in pain. In addition, workers in palliative care and hospice should provide and recommend education for informal and formal caregivers for those with ID around grief and loss.

Participants voiced that adults with ID do not always need specially prescribed bereavement treatments. Like everyone else, what they usually need before, during, and after a loss is someone who attends to their needs not as a person with a disability but as a person with unique abilities and needs. Any health care professional should be able to help in some way on the grief journey of an adult with ID. On the macro level, professional preparation should include working with clients with ID and their families. On the mezzo or agency level, systems supporting formal and informal care providers should also expand resources for individuals with ID and their families. Partnering with organizations such as Arc's is a way to blend scarce resources. On the micro, individual level, practitioners must increase their own comfort and knowledge working with individuals with ID. These patients deserve the quality care and professionals who will accompany them on difficult journeys of loss.

As death touches everyone, bringing public awareness to issues of grief and loss is beneficial to all individuals, communities, and a larger society. Hospice professionals, especially, have the knowledge, skills, and expertise to take a lead in this journey. Assisting others to see the commonalities between adults with ID and typical adults around death and grief is viewed as having potential to decrease the isolation and lost opportunities for adults with ID.

Conclusion

Through the lens of bereavement counselors’ perceptions, this study aimed to shed light on the bereavement experience in adults with ID. The findings from this study, along with existing literature, point out a serious need for education and training for families as well as professionals. As our society attempts to hide or avoid death and dying, individuals who experience loss often mourn alone. Until Western society becomes more comfortable with death and grief, palliative care and hospice professionals will continue to educate about “end-of-life” issues at the literal end of life. In addition, until typical people, professionals included, being to see individuals with ID as humans with the same emotions, their grief may be overlooked. Palliative care and hospice workers have an obligation to be one group of professionals who identify, support, and, if necessary, treat the grief of those with ID. The hope is that over time, there will be less need for end-of-life care providers to be the lone educators and supporters about death and grief for any individual.