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Loss and grief within intellectual disability.

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Loss and grief within intellectual disability.
Owen Doody
Introduction
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
others.
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.
Conclusion
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)
Blackman, N. (2008). The development of an assessment tool for the bereavement needs
of people with learning disabilities. British Journal of Learning Disabilities, 36(3), 165-
170.
Doka, K.J. (2002) Disenfranchised grief: New directions, challenges, and strategies for
practice. Champaign, Il: Research Press.
Doka, K.J. (2006) Caring for the carer: The lessons of research: Grief Matters, The
Australian Journal of Grief and Bereavement, 9, 4-7.
Dodd, P., Dowling, S. and Hollins, P. (2005) A review of the emotional, psychiatric and
behavioural responses to bereavement in people with intellectual disabilities. Journal of
Intellectual Disability Research, 49 (7), 537543.
Doody, C.M., Markey, K. and Doody, O. (2013) Future need of ageing people with an
intellectual disability in the Republic of Ireland: lessons learned from the literature.
British Journal of Learning Disabilities, 41, 13-21.
Fabian, J.M., Thompson, W.W. and Lazarus, J.B. (2011) Life, Death, and IQ: It's Much
More than Just a Score: Understanding and Utilizing Forensic Psychological and
Neuropsychological Evaluations in Atkins Intellectual Disability/Mental Retardation
Cases, 59 Clev. St. L. Rev. 399-430. available at
http://engagedscholarship.csuohio.edu/clevstlrev/vol59/iss3/7
Gilrane-McGarry, U., & Taggart, L. (2007). An exploration of the support received by
people with intellectual disabilities who have been bereaved. Journal of Research in
Nursing, 12(2), 129-144.
Kauffman, J. (2005) Guidebook on helping persons with mental retardation mourn.
Amityville, NY: Baywood Publishing.
Papadatou, D. (2000) A proposed model of health professionals’ grieving process.
Omega: Journal of Death and Dying, 41, 59-77.
Read S. and Elliott, D. (2007) Exploring a continuum of support for bereaved people with
intellectual disabilities: A strategic approach. Journal of Intellectual Disabilities, 11 (2),
167-181.
Worden, J.W. (2008) Grief counseling and grief therapy, 4th Ed, New York: Springer.
... 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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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.