Searching in Bewilderment: Bereavement in the Lives of People with Intellectual Disability

Abstract

Bereavement involves dealing with the loss of a loved one through death and it takes a heavy emotional toll on a person’s life, if this anguish strikes those with weak cognitive comprehension. People with Intellectual disability (ID) already face a lot of unpredictable circumstances in their daily lives, making the death of a loved one an extra burden that they may not be equipped to deal with emotionally. This phenomenon might get complicated if it occurs in the life of a person with ID. The present work focuses on exploration of grieving manifestation through qualitative study by conduction of semi structured interviews with bereaved youngsters having ID. Participants showed concepts of cessation, finality, and universality related to death but the in-depth understanding is lacking. The role of religious introjections is important in understanding and managing grief reactions in the mentioned population. Besides limited comprehension of death and dying, these sufferers need our help to understand and manage the painful feelings which are harder to express verbally in comparison with the general population. The help can be done through grief support model based on four domains of education, participation, facilitation and intervention.

1. Introduction

1.1 Bereavement

To love is to one day mourn [1]

We all experience sadness when we face loss, whether it takes the shape of someone passing away, losing a job, a relationship, goals, aspirations, or other things that we love. Loss is something that unites us as human beings [2].

While discussing loss, one of the most difficult experiences in someone’s life is bereavement, which is the process of dealing with one’s emotions after losing a beloved one to death. At some time in life, almost everyone must deal with this loss. It is a universal feeling that affects everyone, irrespective of their capacities or limitations.

There are significant distinctions between commonly used phrases for death and mourning [3]. Experiencing the loss of a loved one is known as bereavement. Whereas, grief is a natural human response to loss. It consists of the grieving person’s internal reactions to the loss, such as thoughts, feelings, and behaviors. On the other hand, the ritual surrounding the outward display of a grief is known as “mourning” and it vary widely according to religious beliefs, cultural norms, and political stances. Traditional rituals provide a safe and dependable prototype for expressing sadness [4].

Everyone perceives grief differently, bereaved people frequently report a sense of separation from the person who passed away as well as from themselves, also from their past, present, and future. They might worry that they will never experience joy or fulfillment again. However, most people eventually learn to deal with their loss by embracing its consequences and inevitability, developing a new but continuing relationship with the departed one, and re-imagining a future with opportunities for pleasure, joy, connection, and meaning—even if it is in a world without the departed loved one. Typically, a sadness after a loss of a loved one doesn’t require professional help for management as it recovers within time frame of six months to one year after the loss. But occasionally, acute sadness can transform into complex or persistent incapacitating syndrome called Complicated Grief (CG) or Prolonged Grief Disorder (PGD) [5]. It involves exaggerated symptoms of separation distress, emotional, cognitive, and behavioral manifestations, wishing to join the deceased one even after one year has elapsed. It greatly hinders daily life functioning which person was able to maintain before the loss.

1.2 Intellectual disability (ID)

The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition—Text Revision [6], defines Intellectual Developmental Disorder (IDD) (formerly known as ID), one of the neurodevelopmental disorders, as “a disorder with onset during the developmental period that includes both intellectual and adaptive functioning deficits in conceptual, social, and practical domains”. Deficits in general mental capacities including reasoning, problem-solving, planning, abstract thought, judgment, academic subjects, and learning from experience are its defining characteristics. Deficits lead to adaptive functioning impairments, which prevent the person from meeting standards of social responsibility and personal autonomy in one or more areas of daily life, such as correspondence, socialization, educational or vocational functioning, and personal independence at their homes or in public places. There are multiple categories for ID, including mild, moderate, severe, and profound.

Nearly 85% of ID sufferers fall into the mild group, with IQ ranging from 50 to 70, and many even succeed academically to some extent. For instance, someone with mild ID who can read but has trouble understanding what they read. While those with moderate ID have an IQ between 35 and 49 have fair communication abilities, they frequently struggle at complicated levels. 10% or more of people with ID fall into a moderate category. They could also struggle with interpreting social signs and making snap judgments, exclusively in social situations. These individuals are capable of taking care of themselves, but they may require more guidance and assistance than an average person. Most people can live independently, but some still require the assistance of a care facility. Only around 3 or 4% of people with ID who have an IQ between 20 and 30 are in the severe group. These people have limited communication abilities. They require daily monitoring and help since they are unable to carry out all self-care tasks on their own. Most persons in this category have difficulty in independent living and may require group home facilities or support. Those with severe and profound ID need care and assistance constantly. They are dependent on others for all of their daily needs. People who fall into this group may have other physical restrictions as well and 1 to 2% or fewer people with ID fall under this group [7].

1.3 Bereavement and Intellectual Disability (ID)

Individuals with ID now have longer life spans due to healthcare facilities and modifications in lifestyle [8]. They have developed more social interaction and engagement in social activities within families and with community as well. They frequently get care from family members at home long into attainment of physical maturity. With an increase in lifespan, unwanted and unpleasant circumstances may arise that create difficulties for people with ID [9, 10]. These uncertainties and difficult circumstances can reveal a more menacing aspect of losing loved ones [11].

Even though most individuals share some features of grief and mourning, but each person has a unique grieving experience. Individuals who have limited intellectual capacity were traditionally thought to be “protected” from sadness, although there is growing recognition that they can also feel grieving emotions. There is a consistent and increasing understanding that one’s capacity to mourn depends on both their capacity to feel the pain one have experienced and their understanding of the idea of grieving. To put it another way, irrespective of a person’s understanding of death, they might suffer loss and the consequent sadness. Instead of focusing only on “knowing the idea of death,” the approach to assisting persons with disabilities must take into account the “feeling of loss” [12].

Families of the people with ID can assume that the disabled person may not have comprehended what had occurred. They could think the person doesn’t feel the loss, that they must be shielded from reality, or that if they don’t discuss the matter, the loss won’t be as clear to them. Nevertheless, it’s crucial to note that persons with disabilities can experience grief even if they don’t fully grasp the idea of death. They could experience grief because a significant figure in their lives has passed away [13]. Individuals with disabilities can comprehend loss to varying degrees. However, a person is likely to experience the loss in some manner regardless of where they fall on any measuring scale or not [13].

A few researchers discussed and came to consensus that, compared to the general population, individuals with ID displayed increased distress throughout the grieving process because of a lack of information and issues in cognitive comprehension [14, 15]. When there is a paucity of cognitive awareness of the real processes that may unfold in the life of an individual with ID, the bereavement phenomena might become complex [16].

Three significant elements might worsen the grief process in ID [17]: firstly it is the ID itself, secondly, the impact of a disability on attachment, and thirdly it’s the environment’s influence as there is evidence that there is limited understanding of the death construct [18, 19], this lack of understanding does not prevent them from experiencing emotional distress. There is no clear route to escape the emotional anguish in many serious impairments including problems with language expression and communicative issues [17].

Along with the complex form of grief, people with ID tend to have a two to three times higher frequency of mental illness than the overall population [20, 21]. Additionally, persons with ID occasionally display “difficult behaviors,” such as aggression or self-harm, which may or may not be caused by mental illness but call for assistance [22, 23].

1.3.1 Factors affecting the grieving process in younger population

Factors related to the grieving process may include the child’s dependence on the relationship with the departed one, the nature and cause of the death, any possible stigma affiliated with it, the degree of violent action and trauma connected to it, the child’s exposure to and closeness to the deceased at the time of the death, as well as the child’s attendance and participation at funerals and commemorations, are significant.

Family, social, religious, and cultural factors entail the child’s relationships with and reliance on his or her close relatives, classmates, and school. This collection of variables also includes the children and family’s religious and cultural ties and values [24]. Interventions that consider a person’s and their family’s perspectives of death should also depend on the social support networks already in place that reflect those perceptions. Interventions therefore have a stronger ability to support effective adaptation and long-term resiliency [25, 26].

1.4 Assessment of grief in ID

Few researches have attempted to evaluate the conceptual comprehension of death in people with ID; this notion is not just connected with better levels of abstract thinking, behavioral flexibility, and linguistic proficiency [27, 28, 29, 30].

Accurate assessment of grief in people with ID is a crucial task as their grief manifestations are expressed through surrogate reports of parents, guardians, teachers, or other close relatives. The actual picture of suffering may get overshadowed by the subjective expressions of the tellers. To get a good glimpse of an inner devoid, phenomenological exploration of grief through interviews is considered acceptable.

The phrase “grief” is underlined with “special requirements”, due to its significance and lack of acknowledgment by others. In accordance with the study, getting in-depth and first-hand information from interviews might enhance the qualitative features of gathering sufferers’ experiential phenomena and provide value to grief analysis in people with ID [31].

In one of the qualitative exploration of grieving processes [16] semi structured interviews were conducted with 7 grieving adolescents having ID of mild to moderate level, in Pakistani Muslim culture. The verbatim of adolescents showed the depiction of different concepts related to death including cessation, universality, and finality.

Let’s discuss each concept with verbatim of bereaved youngsters having ID. The concept of cessation, which claims that the body’s vital activities cease upon death, was addressed by saying:

“Deceased person goes away. Because their time has elapsed”, “One turns pale after death” (Participant A).

“Body is not alive anymore” (Participant C).

It indicates that the participants were aware of some basic characteristics, but seems like they lack a deeper comprehension as on probing no details were given by the youngsters.

Secondly, the concept of universality, which holds that death will come to everyone and that it is a universal phenomenon for all living things to die, was also addressed by the participant.

Everyone has to die (Participant F).

According to youngsters, everyone is on their last journey, and they will not come back again. The idea was concrete in understanding, which may show the finality of the death but its generalization onto other people was not mentioned by the participants.

Deceased ones don’t come back after death (Participant E).

Deceased one goes away and never comes back (Participant G).

Religious preaching seemed important in grasping the concept of death and also in understanding the religious rituals that surrounded the death phenomenon. Among the many factors that might help a grieving person cope with the grief, religion is one of the supportive factors [32]. People with ID may have strong religious convictions that act as a supportive factor in dealing with the grief of lost loved one [33].

Deceased person goes toward God (Participant D).

The phrase “It is Allah that takes the souls at death...” (39:42) can be found in the Holy Book Qur’an as well [34]. Muslims have been exposed to religious teaching during their educational career as well and religious practices were also observed through vicarious learning process by people with ID at their homes which holds the idea that dead people go to their Lord.

We buried them in grave (Participant B).

Make them buried in grave (Participant E).

Muslims are buried in grave (Participant G).

Even though the exact rationale behind rituals might not be known by the participants, but the overall processes related to death, its occurrence, and eternity are acknowledged by people with ID. It is observed by the number of professionals that the majority of people with ID have an understanding connected to the death concept known as “cessation, universality and finality” [18, 19, 35, 36]. It is believed that including younger population with ID in rituals and grieving processes is essential for promoting good grief reactions [37]. To help them comprehend and accept that death has occurred, they must be encouraged to partake in death rites [38]. These individuals occasionally run the danger of being under-informed, [39] which raises the possibility of psychological problems and unfavorable grief results.

Death rituals are evident in numerous cultures, and their traces can be seen in multiple studies. Generally, rituals improve group cohesion by venting the unpleasant emotions connected with a loss. Bereavement rituals give excellent social support, and there is substantial research on the value and evaluation of religious acts in loss [40].

One of the interesting observation regarding causes of mortality showed that people with ID are able to identify the reasons for death but they struggle to comprehend the exact mechanism. Introjection of societal norms, values, and practices trumps the cognitive comprehension of why people die when they are ill or sick. It is conceivable for people with ID to lack cognitive awareness of the loss or the emotional responses, and missing the presence of a deceased loved one [12]. A few statements showed different reasons of death explained by youngsters having ID:

People may die of an abdominal disease (Participant A).

People may die of a Coronavirus (Participant B).

People may die of a heart attack, heart failure during sleep at night (Participant C).

People may die of an illness (Participant D).

The manifestations of bereavement in the population with ID may differ from the mourning expressions of the average population, which may include sadness, fearfulness, laughing, and becoming agitated or aggressive due to their incapacity to articulate their sufferings. Individuals with ID may exhibit emotional disturbances such as low mood, anger, apprehension, and behavioral issues such as fretfulness, fatigue, or overactivity [12].

Another verbatim of bereaved youngster manifested an expression of grief by saying:

Felt good. I was laughing (Participant B).

Participant B had tears in eyes and a smile on face while describing sentiments of loss, which may indicate a deviant or abnormal display of pain in people with ID. Typically, people with ID have a wide range of emotional responses, such as laughing when they are anxious, and report the opposite of how they feel [41].

In Pakistani culture, the concept of social support religious activities is one of the hallmarks in managing stressful situations and it may aid in dealing with loss of a loved one [16].

The assessment of grieving phenomenon may show that the true soul of the loss was unknown to adolescents, but they experienced emotional setbacks after the departure of loved ones, and due to communication difficulties they may not present or express their sufferings appropriately. But at the same time, the help of religion and social support assists in dealing with the process of bereavement.

1.5 Management of Bereavement in ID

Despite the significant incidence of behavioral and mental health issues in people with ID, the evidence supporting the therapeutic efficacy of psychological interventions for persons with ID is sparse [42]. Managing behavioral indications of distress should take into account the long-term repercussions of mourning since ID is a predictor of atypical sorrow [43, 44].

There is no “quick fix” for grief and no “proper way to grieve,” but there are methods by which one may assist oneself in accepting the loss [2]. The adequate management of grief and dealing with people having ID is a constant uphill battle. However, formal grief intervention may help grieving people with ID manage their continuous and unnoticed pain, as people with ID can get an advantage from group or individual psychotherapeutic interventions. Along with it, social support is one of the environmental components that reduces the symptoms [45].

Continuum of Bereavement support model was introduced for the people with ID [46]. The model was modified to system approach in order to help people with ID [38]. It includes number of strategies at different levels. This model supports a long and short-term, reactive as well as proactive techniques with four main domains [38] [46]. The first domain is the “Education” about the death and its effects. It involves the general preparation for death experience, emotions related to the loss, and manifestations toward death phenomenon. This leads to the second domain of “Participation” in cultural rituals of death and the involvement of people with ID in these death rituals. Its main aim is to engage and actively involve people with ID in realizing the finality of death of loved one. It further marches toward the third domain of “Facilitation” which targets acknowledging the loss and provision of adequate support systems to these people. These three domains may reduce the requirement of seeking professional help but if there is a requirement for further assistance, the last domain is based on “Intervention” including professional therapeutic management. These four domains can assist multiple people at different organizational standards [38]. All domains of the system support model can work at interactive levels in a system. It includes [38]:

1. Micro level: This level includes the bereaved person having ID and his/her family or close loved ones.

2. Meso level: It includes the bereaved individual(s), who are receiving assistance other than family members which may involve assistance of teachers, grief counselors, caretakers, etc.

3. Exo level: It includes the institutions or services that may not directly involve the bereaved individuals but influence a person indirectly.

4. Macro level: Macro level strategies are based on policy making or guidelines at the national or international level related to grieving persons with ID.

The interaction of all these domains is illustrated in Figure 1.

Figure 1.

Bereavement support model: an integrated approach (Read & Elliot, 2007).

1.5.1 Education

The education domain refers to imparting psychoeducation regarding death, emotional manifestations, and the experience of losing a loved one to death and preparation for the upcoming loss in a life of a person with ID [38]. The provision of education on a death process is considered as a facilitating concept in making grieving process easy [47].

1.5.2 Participation

It is considered healthy to participate in the grieving rituals of a loved one to ease the grieving reactions in people with ID [37]. Such individuals should be supported and encouraged to engage in grieving processes for understanding and realization of death phenomenon [38]. People with ID are not fully informed by their caretakers regarding death [39], and it may increase psychological distress and worsen the outcomes of grief.

It is mandatory to make them prepared for the loss to avoid overwhelming impact of other people’s emotional reactions on their grieving processes [39]. The immediate family members or the caretakers who are also dealing with their grief can be involved in receiving support for themselves to assist grieving youngsters with ID [48].

1.5.3 Facilitation

It involves understanding, acknowledging, and adapting the adequate coping skills to manage the loss [38]. It aims at reducing the negative grief outcomes. Giving detailed information regarding death process is an important facilitator. The families of grieving youngsters with ID as well as their teachers can assist them in understanding this complex process. Usage of direct explanation or language is thought to be a vital factor in giving education to people with ID about death [49].

1.5.4 Intervention

The interplay of Education, Participation and Facilitation domains greatly decreases the requirement of professional Intervention for people with ID [38].

1.5.5 Grief support on different environmental levels

The requirement for the integrated support system for bereaved individuals with ID is important [50].

The provision of support by family and friends comes under the umbrella of Micro level. It involves the participation in grieving rituals, processes, and discussion related to death of a loved one. Family is considered an integral part of a life of a person with ID in managing the emotional reactions and grieving manifestations [51]. Support from family is also important in prevention of development of CG in a person with ID [52].

The Meso level describes assistance from psychologists, educators, and bereavement counselors that is given outside the close family [38]. When a loved one’s loss affects the entire family, support is thought to be especially crucial at this phase.

Professional assistance for grief management can be taken at Meso level if social support is not sufficiently beneficial and there is an increment in psychological crises that require active management [48]. In this regard, professional grief assistance services are suggested [53]. The group psychotherapeutic intervention based on play and/or behavior therapy can help individuals with ID revive their lost spirits and acceptance of loss through guided techniques.

On the Exo level grief support is not directly involved usually [38]. It includes supporting the parents or families to equip them in handling people with ID by allowing them to actively participate in death related rituals and other grieving processes [41]. Parents of individuals with ID at times also need support to handle their grieving processes [48]. It involves engaging parents to seek other useful resources for the facilitation of their young one’s grieving experiences.

2. Conclusion

Grief is characterized as a painful subjective experience that is unique to each individual, yet suffering is universal. People with ID may express the loss through different behavioral and/or emotional manifestations which may vary from the general population. The significance of religion and societal influence cannot be overlooked but the immature understanding may cause problems in comprehending death phenomenon which may manifest in multiple ways in life of a person with ID. Understanding and accepting the idea of management of grieving expression in people with ID is important and it can be done with the aid of social support and professional assistance if required.

Acknowledgments

I’m grateful to my Doctoral Thesis supervisor Dr. Noshi Iram Zaman for her continuous guidance and to my student Ms. Ayesha Nayyar for supporting me in qualitative findings of the research.

Declarations

This Chapter is extracted from my PhD research work and it entirely belongs to my research findings, and personal reflections.