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Loss and grief within intellectual disability.

Loss and grief within intellectual disability.
Owen Doody
One of the most significant trends seen in recent years has been the increasing longevity
of people with intellectual disability (Doody et al., 2013). Advances in medical and
neonatal care along with deinstitutionalisation have increased life expectancy for most
individuals with intellectual disability. In today’s society individuals with intellectual
disability live with family members, in special assisted living facilities, community
group-homes or on their own. Just like anyone else people with intellectual disability
have created and developed attachments to various persons be it family members, fellow
residents, staff members, co-workers, members of their communities, and other friends.
With such attachments comes the experience of loss, where staff members leave, other
residents relocate or die and the death of a parent, caregiver or family member may
occur. Thereby loss and grief are a natural part life however; individuals with intellectual
disability may experience significant secondary losses such as the loss of a parent or
caregiver may necessitate a change in residence leading to a cascade of losses that may
include friends, neighbors and employment. In addition some higher functioning
individuals may experience a sense of grief and loss over their disability where they
experience a persistent sense of loss over the fact that they are perceived as different from
Grief reactions in people with intellectual disabilities
Since cognitive processes are impaired, individuals with intellectual disability may have
difficulty in comprehending death. However, ability to understand death is not dependent
on IQ but rather chronological age suggesting the critical importance of experiential
learning (Fabian et al. 2011). Often the grief of individuals with intellectual disability is
often disenfranchised (Doka, 2002; Read and Elliott, 2007). Disenfranchised grief occurs
when an individual experience a loss but that loss is not openly acknowledged, socially
supported, or openly mourned. Thereby the person experiences a loss, but has no socially
sanctioned right to grieve. Disenfranchised grief may occur as caregivers may feel
inadequate in addressing grief in individuals with intellectual disability and hence ignore
their needs. There may be a sense of over-protectiveness that creates a reluctance to upset
individuals with intellectual disability that results in attempts to limit exposure or
discussion of death, loss, and grief. However just because an individuals grief may not be
understood by other; it does not mean that the individual does not understand and
experience the loss. There is no timetable for grief, over time an individual’s painful
cognitive and emotional reactions lesson and return to their former levels of functioning.
In truth, for some individuals their loss can create an opportunity to learn new skills and
gain insight. Over time individuals may experience surges of grief especially at holiday
or anniversary times or at events in which the presence of the deceased is deeply missed.
There is no particular sequence or stages within the grieving process and Worden (2008)
sees grief as a series of very individual processes. What needs to be considered is that
individuals with intellectual disability often have limited or distorted emotional
expressions such as giggling when anxious or positive bias where they report they are
happy (Dodd et al. 2005). These may mask the deep feelings of anxiety, dependency, and
ambivalence about the dependency, and abandonment that may be generated by the loss
(Kaufman, 2005).
Grief is common to all people thereby; individuals with intellectual disability generally
grieve in the same ways as others who experience a loss. However, every individual’s
experience of grief is unique, based upon the characteristics of the person and the
relationship to the person they have lost. Grief manifestations include physical, cognitive,
emotional, behavioral, and spiritual. On a physical level grief may be converted into
physical reactions such as nausea, headaches, or other bodily aches or pains. Moreover
physical symptoms result in care, concern and support from others at a painful time.
Often emotional manifestations are also converted and interpreted as physical symptoms
for example anxiety is often expressed as stomach pains. Thereby it is crucial to
frequently assess physical health. At an emotional level there is a range of responses to
loss including; anger, guilt, jealousy, anxiety, sadness, or regret. It is not uncommon that
displaced anger is directed towards other residents or staff members and guilt can be a
common reaction due to limited understanding of causality. At a cognitive level in the
initial phases of grief shock, disbelief, and denial may occur. Throughout the grieving
process an individuals concentration or attention span can be affected, their ability to
process information less effectively and may experience impaired judgment. Behaviors
may be influenced and an individual may seem lethargic or hyperactive and sleeping or
eating pattern may change. Generally angry, lashing out at others, or becoming
withdrawn is common and may become quite resistant to any changes in routine.
Resistance to changes may result in compulsive behaviors where an individual becomes
rigid in trying to maintain stability.
Acknowledging other mourners
Within grief support it is important to acknowledge other mourners; family members
particularly may need support. Often, the death of an individual with intellectual
disability can be disenfranchised by others, where the loss of an adult child with
intellectual disability may not always be acknowledged by others (Doka, 2002).
Memorial services at group homes or residences and sheltered workshops can have much
value. As they can bring a community of mourners together that includes family, staff,
friends, fellow housemates and co-workers. Such remembrances reaffirm the worth of the
deceased and the inherent value of the deceased’s life. This is particularly important
when the wider community may view such a loss more ambivalently. Family members
also may be invited to participate in memorials. In addition, it may be effective education
to encourage the deceased’s fellow housemates, co-workers, and residents to
acknowledge the loss to the family through cards, drawings, or video tributes as families
often treasure such items.
Grief support should also be extended to staff members as staff members can create
strong bonds with individuals with intellectual disability that can last over years.
Moreover, the deaths of clients can result in a secondary loss for staff where contact with
family members is likely to cease once a resident dies. Moreover the loss of a resident
may raise concerns for staff around the ethical decisions that have were made or they
may feel that end-of-life care was inappropriate to the nature of the individual’s
disability. Without grief support for staff it is unrealistic to expect staff to develop close
bonds with clients, and support other individuals with intellectual disability at the time of
the loss if their own needs for grief support are not met. The result of such unrealistic
expectations is that staff members are either likely to experience a sense of occupational
stress or burnout, or become wary of bonding to residents as closely in the future
(Papadatou, 2000). Effective grief support generally involves individual strategies of self-
care. These include acknowledging and validating loss, finding effective methods of
respite that allow one to manage stress, and developing a personal and spiritual stance
that allows a staff member to find an overarching framework for attributing meaning to
life and death as well as finding satisfaction in one’s own work (Doka, 2006). However,
research also has emphasized that organisations play a large role in effecting support.
Effective organisations require formal policies and informal procedures that validate loss
that include time off to attend funerals or debriefings after death. These policies
/procedures create an environment where supervisors and employees can be both
validating and supportive of grief. In addition effective organisations offer both ongoing
education and rituals that marked significant deaths (Gilrane-McGarry Taggart, 2007;
Blackman, 2008). However it is important to also acknowledge that not all losses involve
death, such as when residents or staff members leave also can engender feelings of grief
and ought to be marked by ritual.
Like other populations, individuals with intellectual disabilities as they age will
inevitably have to cope with loss and grief. While one cannot protect individuals from
such loss, one can prepare and support individuals and support should begin even before
the illness experience or loss occurs. In supporting the person we should provide
opportunities to grieve and consider any change in behaviour with a high degree of
suspicion. Within the grief process we need to consider the people left behind and when a
person with intellectual disability passes away this will mean providing support to family,
staff, housemates, co-workers and friends.
References (can be on request if you wish to cut content)
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... Pro situace, kdy podpora chybí, zavádí Doka termín "společností zneuznaný zármutek" (disenfranchised grief, unaccepted grief; Doka, nedatováno). Užíváme jej pro zármutek následující velkou ztrátu, která není nebo nemůže být upřímně přiznána, zármutek, který osoba nemůže veřejně odtruchlit či ve kterém není podporována (Doka, nedatováno;Read & Elliot, 2007, in Doody, 2014. Kauff man (2005) Rituál jako nástroj podpory v období truchlení Jako nástroj podpory procesu truchlení lze využít smuteční rituály. ...
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Abstrakt: Ztráta blízkého člověka patří mezi nejnáročnější životní situace. Způsob, jakým se člověk s takovou situací vyrovnává, záleží mimo jiné na podpoře, která mu je během truchlení poskytnu-ta. Článek poukazuje na aktuálnost tématu truchlení dospělých s mentálním postižením z hlediska speciální pedagogiky a dalších pomáhajících profesí, diskutuje některé přístupy k problematice truchlení v kontextu podpory a nabízí vybrané metody. Abstract: The loss of a close person is one of the most diffi cult life situations. Th e way a person copes with such a situation depends, among others, on the support that is given to him or her during grieving. Th e article points out importance of bereavement support in the context of special education and other professions and discusses some approaches and methods of bereavement support.
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This article proposes a model that conceptualizes health professionals' reactions to the multiple deaths of their patients, in terms of loss and grief. It suggests that grieving is both an individual and a social-interactive process that may be understood in terms of an ongoing fluctuation between experiencing grief reactions by focusing on the loss experience, and repressing or avoiding grief reactions by moving away from it. This fluctuation allows professionals to attribute meaning to the death of individual patients, and to transcend these losses by investing in life and living. The interaction between individual idiosyncratic factors (“life style”) and environmental factors (“work style”) is described in terms of how they affect the grieving process. Special consideration is given to the individual and collective forms of grieving, and to the role of team support.
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Little is known about the views of the primary and secondary support offered to people with intellectual disabilities by formal carers around the time of a death of a loved one. This paper investigates the perceptions of the types of support provided by front-line staff to this population at the time of, and following, bereavement. In total, 11 people with intellectual disabilities participated in semi-structured interviews. Practical supports (for example, involvement in events surrounding the death and access to the rites of passage) provided to these individuals were reported to be positive interventions, whereas the provision of emotional support (for example, formal and informal supportive counselling) by front-line staff were cited by the participants to be lacking. The use of alternative approaches (for example, reminiscence work, the creation of a life story book/family tree, art therapy and pictorial material) was also reported to be limited. These findings highlight the need for education and training to provide front-line staff caring for people with intellectual disabilities with the insights, knowledge and skills necessary to practically and emotionally support this population who are facing the loss of a loved one. In addition, these training needs should be aligned with ongoing managerial and specialist bereavement supports, so that the specific needs of people with intellectual disabilities can be fully addressed.
There is a cost to persons who counsel or work with individuals who are ill, dying, or bereaved. Frequently, they can experience grief reactions that can negatively affect a personal sense of well-being, and relationships with others both within and outside of their workplace. This paper explores the phenomenon of carer grief. The paper also identifies strategies – both individual and organizational – that assist carers in coping with the experience of grief.
Accessible summary• This article synthesises current literature regarding ageing and service provision for people with an intellectual disability. • People with intellectual disability are living longer. • Services need to respond to the needs of older people with intellectual disability. SummaryPeople with an intellectual disability are living longer, and the numbers continue to rise. Ireland has and is seeing a dramatic change in the age profile of clients and the support services they require. While Ireland had specifically trained nurses in intellectual disability, they predominately work in residential settings. This can be seen as been at odds with the philosophy of supporting people with intellectual disability live at home with their family and the primary care system. As the ageing population is rising, intellectual disability services need to proactively develop and respond to this changing age profile by reviewing and adjusting the way in which they deliver services, not only in terms of how services develop and respond to a changing age profile but also in terms of collaborative working across all health services.
It is well documented that the death of a family member can trigger a need for crisis intervention and cause symptoms of complicated grief for people with learning disabilities (Bonell-Pascual et al. 1999; Dodd et al. 2005; Emerson 1997; Kloeppel & Hollins 1989;MacHale & Carey 2002) This is in part because of the fact that there are often many hidden losses which company the death of a parent or close relative. When these go unrecognised the original grief is compounded and the person is more likely to have difficulties connected to their grief (Blackman 2003). The bereavement needs assessment tool (BNAT) has been developed to help professionals supporting a bereaved person with learning disabilities to make a comprehensive assessment at the point of bereavement (or even pre-bereavement) in order that concurrent losses are discovered and plans can be put into place as to how to attend to these. An assessment tool has been developed based on experience collected over a number of years of having supported grieving people with mild to moderate learning disabilities. A mixture of learning disability professionals (two psychologists and four learning disability nurses) working in three community teams have tried out the assessment tool and their comments will be used to further refine this tool. The aim of the assessment tool is to clarify the specific bereavement needs of an individual, enabling these to be met. The assessment tool consists of 10 main questions with sub questions. There is a focus on three areas of support: Practical issues – e.g. has this person’s ability to communicate with others been affected by this loss? Social issues – e.g. what impact has this death had on the person’s familial network? Emotional issues – e.g. does this person recognise their emotions and can they express them?
Our knowledge and understanding of grief and its consequences have grown rapidly in recent years. There is a growing understanding that bereavement and loss represent a very significant event in the lives of people with intellectual disabilities (IDs). To date, there is no systematic review of the literature on the emotional, psychiatric and behavioural responses to bereavement in people with IDs. This comprehensive literature review firstly examines the current opinion regarding the phenomenology of pathological grief in the general population. Research examining the ability of people with IDs to understand the concept of death is explored. In addition, a systematic review of the literature looking at the emotional, behavioural and psychiatric responses to bereavement is carried out. Bereavement and loss have distinct effects on the mental health, behaviour and emotional lives of people with IDs. Following a bereavement, symptoms of depression and anxiety increase, and general behaviour is altered. Traumatic grief symptoms have not yet been specifically studied and quantified. Particular difficulties are associated with researching the effects of bereavement on people with IDs. Further work needs to be done to more accurately describe the nature, time-scale, severity and frequency of the symptoms of traumatic grief in people with IDs, in order to improve assessment and treatment of affected individuals.
People strive to make meaning out of the death of their loved ones. People with intellectual disabilities, however, may not be actively involved in death and may therefore experience disenfranchised grief. Bereavement support for this population remains at best inconsistent across the UK. The aim of this article is to further explore a bereavement support model recently developed. A case study is utilized to demonstrate the practicalities inherent in the integrated approach offered. A bereavement support framework can provide a holistic perspective for people with intellectual disabilities when integrated with a systems approach to care delivery. The resultant strategy incorporates practical ideas that address the bereavement needs of people with intellectual disabilities, encapsulating all aspects of current and future care delivery. Finally, core recommendations are offered for consideration.
Disenfranchised grief: New directions, challenges, and strategies for practice
  • K J Doka
Doka, K.J. (2002) Disenfranchised grief: New directions, challenges, and strategies for practice. Champaign, Il: Research Press.