Occupational Therapy's Role in Coping with Grief or Loss
...................................................................................................................
Since last week, the expected death toll at the World Trade Center continues to  rise, as unaccounted for citizens of other nations are added to the list.  While the three events in the United States are center stage for many of us, we know that violence and death are daily occurrences in too many pockets of the world. 

Before turning away from our concentration on disaster and its fall-out, I thought it necessary to pull together selective references that address death, grief, and loss.  Keep in mind that these references are provided to give you a starting point and  to emphasize occupational therapy intervention.

Baldwin, L.  (1986).  The Elderly Widow: Bereavement and Identity Reconstruction. Gerontology Special Interest Section Newsletter,  9(1), 7-8.

Barnum, M.C.  (1966). An occupational therapist's observations concerning President Kennedy's assassination; With ramifications for understanding loss. The American Journal of Occupational Therapy,  20(6), 280-285.

Larson, K.O. (1992). Initial Study for Internal Reliability of the "Role Adaptation, Bereavement Inventory." New York, NY: New York University.  [Master's thesis, W 4A.L121I 1992]

ABSTRACT: This initial study of the Role Adaptation, Bereavement Inventory (RABI) (Larson, 1991) established internal reliability.  The RABI is an evaluation instrument developed from a frame of reference related to occupational therapy intervention for a person grieving the death of his or her spouse.  The theoretical base of the frame of reference derives concepts and postulates from theories about bereavement, social roles, and social learning.  This study is an initial step in establishing validity and reliability for the RABI, refining the frame of reference, and ultimately providing an approach to treatment for occupational therapists working with people who are grieving the death of their partners.

Wright, J.  (1995).   Occupational restructuring by and selected psychological characteristics of older adults after the death of their spouse. Los Angeles, CA: University of Southern California.  [a doctoral dissertation, W 4A.W23180 1995]

ABSTRACT: This descriptive study, using an Occupational Science base, focused on older adults and how they restructured their lives during an eight year period after the death of their spouse.  Two distinct processes were seen to occur.  The first was a normal, yet individual, grieving process that accompanies any loss; and the second, was the restructuring of the individual's occupations (daily activities that occupied their time) without the spouse.  The subjects  (N=122) were recruited from a group of older adults, ages 58-90, who had participated in a two-year longitudinal study done at the University of Utah.  Data from three collection periods (At the time of the spouse's death, two years and eight years later) were used to look at how the participants restructured their occupations during this time period.  Psychological measures of self-esteem, coping, and depression were also compared across time. Results showed that the participants used a variety of strategies to learn the new skills or occupations as they restructured their lives.  Strategies included learning by trial and error, learning from friends and relatives, paying someone else to do it or teach them and foregoing the occupation.  New occupational skills (daily activities) that had to be learned, tended to follow gender specific lines.  The majority believed that they had coped better  than they had expected. Psychological measures of self-esteem, life satisfaction and coping all had a statistically significant decrease two years after the spouse's death and then a statistically significant increase eight years after the death.  Depression decreased at two years then returned to a baseline level by eight years.  Loneliness was a recurring theme, even though the participants felt they had coped  well and were satisfied with how they had adjusted to life without their spouse.

Wrigley, C.  (1993). Widowhood: Facing Life Alone. Journal of Occupational Therapy Students, 7(1): 9-18.             

ABSTRACT: The difficulties of widowhood, including social, emotional, and lifestyle transitions, were investigated for this article.  Women 50 years of age and older were the specific focus of both literary research and personal interviews.  Four stages of grief are discussed, and the ways in which a widow copes with each stage was found to have a powerful impact on the success of the reorganization of her life.  Normal, age-related, developmental tasks of older adults are compared to those of the widow.  Treatment modalities and their success in helping the widow during the different stages of transition and grief are also considered.  Many widows were found to suffer from depression, and ways of minimizing its effects are discussed.  It was determined that not only do widows need to face death openly to begin  their healing process, but that caregivers need to work through their own attitudes toward death before helping the bereaved.

Occupational therapists dealing with grief or death

Burnett-Beaulieu,  S. (1982). Occupational therapy profession dropouts: Escape from the grief process. Occupational Therapy in Mental Health, 2(2), 45-55.

ABSTRACT: The emotional process of clinical practice and the loss of expected rewards may offer an explanation for short clinical careers.  Occupational therapists as they develop in their careers may experience unconscious, aversive, affective responses to the difficulties encountered with  those who have severe, chronic disabilities.  Additionally, they may acquire "stigma by association" and form empathetic identifications with their client's feeling of loss. The "grief process" stages, as outlined by Kubler-Ross, are employed in this article to understand the affective responses by students and therapists as they develop professionally.

Bye, R.A.   (1998). When clients are dying: Occupational therapists' perspectives. The Occupational Therapy Journal of Research,  18(1), 3-24.            

ABSTRACT: Occupational therapists working with people who are terminally ill potentially face a contradiction between the principles and assumptions of rehabilitation-oriented practice and the needs and experiences of clients who are dying.  This research investigated experiences of occupational therapists working with clients who are terminally ill to examine if such a contradiction existed and, if so, how it was managed in daily practice.  Ten occupational therapists working with people who are terminally ill shared their perspectives through in-depth interview and participant observation.  Data analysis followed grounded theory procedures.  Nine conceptual categories were generated from the data: Making a Difference, Referral to Occupational Therapy, Assessing the Situation, Goal Setting, Building Against Loss, "Normality Within a Change Reality," Client Control, Supported and Safe Care, and Closure.  Analysis of relationships between categories resulted in the development of a conceptual framework of occupational therapy practice with people who are terminally ill.  The core phenomenon of the framework emerged as Affirming Life: Preparing for Death.  Results indicate that occupational therapists manage this contradiction between their rehabilitation training and their work with people who are dying by reframing the process and outcomes of practice to acknowledge clients' dual states of living and dying.

Cipriani, J., Crea, J., Cvrkel, K., Dagle, S., Monaghan, K. & Seldomridge, L.  (2000). Coping with the death of clients: A pilot study of occupational therapy practitioners. Physical & Occupational Therapy in Geriatrics, 17(4), 65-77.

ABSTRACT:  The purpose of this study was to describe how occupational therapy practitioners cope with the death of a client and  to discover what resources are offered to them by their  work facilities.  A questionnaire was mailed to 100  occupational therapists and occupational therapy assistants  who were members of the Gerontological Special Interest Section of the American Occupational Therapy Association.   Semi-structured interviews were conducted with four respondents to expand upon the findings of the questionnaire.  Questionnaire respondents described their formal educational experiences, strategies utilized, and what resources were provided by their facilities to cope with the death of a client. Themes involving connecting with a particular client's death, lack of formal education and the value of experience and maturity emerged from the interviews.  In summary, improvements in formal education networking, and resources provided by facilities can aid practitioners when coping with the death of a client. [Article copies available for a fee from the Haworth Document Delivery service . . .]

Gammage, S.L., McMahon, P.S. & Shanahan, P.M. (1976).  The occupational therapist and terminal illness: Learning to cope with death. The American Journal of Occupational Therapy, 30(5), 294-299.

Kyler-Hutchison, P. (1996). Issues in Ethics; Making Life and Death Decisions. OT Week, 10(10), 9-10.             

Martin, K.B. &  Berchulc, C.M.  (1987). The effect of dying and death on therapists. Physical & Occupational Therapy in Geriatrics, 6(1), 81-87.                   

ABSTRACT:  Physical and occupational therapists working in hospice programs are called upon to provide emotional support for  their dying patients and their patients' families. However, therapists themselves frequently encounter a variety of personal stresses, which often go unrecognized.  Therapists treating dying patients may experience emotional, physical, and intellectual repercussions. This paper summarizes a review of the literature describing the effects of the dying patient on the caregiver. Descriptions of these effects and their impact on individuals are provided. The need for additional study in this area is discussed.

Thibeault, R.  (1997). A funeral for my father's mind: a therapist's attempt at grieving. Canadian Journal of Occupational Therapy, 64(3), 107-14,

Abstract: This paper addresses grieving from a therapist's perspective. As occupational therapists, we focus naturally on clients' concerns when illness or death strikes in their lives but little is known on how we react when faced with personal losses. Through the experience of gradually losing her father to a degenerative disease, the author attempts to distinguish what, in her professional training, can be helpful or detrimental to her grieving process. Five areas, common to all occupational therapists, are examined in terms of their impact on grieving. They consist of our theoretical understanding of grief and bereavement; our knowledge of pathologies and prognoses; our use of client-centred guidelines, our access to a professional network, and the values inherent to the practice of occupational therapy. While acknowledging that grieving is fundamentally the same with therapists and people in general, the author emphasizes some differences linked to our professional status and suggests coping mechanisms better suited to our specific situation.   (24 ref)

Tigges,  K.N. & Marcil, W.M.  (1988). Terminal and life-threatening illness: An occupational behavior perspective. Thorofare, NJ: Slack, Inc.

Adjusting or coping with loss or disability                   

Buscherhof, J.R. (1998). From abled to disabled: A life transition. Topics in Stroke Rehabilitation, 5(2), 19-29.

ABSTRACT: The psychological transition from "abled" to disabled is a process that evolves slowly over time.  A psychiatric nurse, who is a stroke survivor, describes eight stages in her emotional recovery from stroke: denial, grieving, transition from care-giver to care-receiver, developing optimal independence, building a new or renewed system of social support, successful reintegration into the community, acceptance of any remaining disability, and return to a quality life.  The development of a new sense-of-self is a major psychological task for those who must adapt to significant neurologic loss.  The need for better theory and research pertaining to psychological rehabilitation in stroke is noted.  KEY WORDS: disability, handicap, impairment, mental health, quality of life, rehabilitation, self-concept, sense-of-self, stroke                   

Carr, S.H. (1991). Case report: Adaptation to loss: Occupational therapy as a way of life 45(2), 167-170.
 

Ilott, I. (1996). The lost-ness of loss: a reappraisal of loss. British Journal of Occupational Therapy, 59(6), 273-6.

ABSTRACT:  The article explores the proposition that loss is a central,  but neglected and taken-for-granted, concept within occupational therapy. A reappraisal of loss was stimulated by a module entitled "Loss and life threatening conditions" in the South Trent In-Service Diploma Course in Occupational Therapy. The student-negotiated curriculum is described. The evaluations highlighted the personal value and professional  relevance of the concept of loss. These were confirmed during a staff development workshop for 37 experienced and expert therapists at Nottingham City Hospital. A framework that combines loss,  mastery, mystery and occupation is offered as a professional model with practical implications. Encouragement is provided to re-evaluate and perhaps rediscover the pivotal place of loss within occupational therapy.   (32 ref)

Manuel, J.G.  (May, 1996).  Personal, physical, and psychosocial implications of a short-term disability.  The Journal of Occupational Therapy Students, 5-9.

ABSTRACT: This article details the author's personal experiences while enduring a short-term disability: a torn gastrocnemius resulting in a serial casting. The physical difficulties and psychosocial implications encountered due to this disability are discussed. The author details how she managed to adjust as a registered nurse. A main focus of this article is on the accomplishment of activities of daily living when dealing with a disability. The psychosocial effects of the injury and their impact on relating to the person who is experiencing a permanent disabling condition are also discussed. The results of dealing with this disability have left the author with the belief that she will be a better and more compassionate occupational therapist as she embarks on her career.

Resman,  M. (1997).  Unspoken Needs.  OT Week for Today's Student, 4(1), 20-21.

ABSTRACT:  I almost didn't write this article because I didn't want to come off in public as whining and wallowing in self-pity.  Then I realized that's the whole point--to share with other therapists what clients may be experiencing but are not willing to speak about.  As a person with new disabilities I have done my whining and wallowing in private.

Spencer J., Davidson H. &  White V. (1997). Help clients develop hopes for the future. . The American Journal of Occupational Therapy, 51(3), 191-8.

ABSTRACT: The purposes of this article are (a) to examine cognitive, emotional, and spiritual aspects of hope as reflected in the literature; (b) to describe three clinical approaches that have been used in occupational therapy to engage clients in development of hopes for the future; and (c) to consider practical issues that have been raised by therapists seeking to incorporate development of hopes in their practice. Literature from health care and the social sciences indicates that cognitive, emotional, and spiritual aspects of hope are interwoven in a complex process that evolves over time after major loss. Three alternative clinical strategies for collaborating with clients in developing hopes are reviewed, including a goal-setting and goal-attainment approach, an occupational change approach, and a life history approach. These clinical strategies are illustrated by the stories of an elderly mental health client, an adult rehabilitation client, and an adolescent orthopedic client, which are drawn from research in which the authors have been involved. Discussion of issues involved in incorporating hope work into daily practice is based on the experiences of practicing therapists who participated in a workshop. These include pragmatic issues of documentation and reimbursement of this aspect of practice as well as clinical issues of how to develop hopes among clients who appear hopeless.

Vargo J.W.  (1978). Some psychological effects of physical disability. The American Journal of Occupational Therapy, 32(1), 31-4.

ABSTRACT: It has long been recognized that people who become severely disabled go through two stages (denial, mourning) before adjusting to their disability. Negative aspects of these stages, such as dependence and hostility, are viewed as logical outcomes within a society that perpetuates an ideology of normality, where disability is perceived as evidence of negative status. The prerequisites of self-acceptance are examined together with their implications for rehabilitation and re-entrance into the community.

Woodburn,  C. (1992).  Living the loss: Adjusting to changes in ability: Occupational therapy's role in facilitating adjustment to illness and injury.  World Federation of Occupational Therapists: Bulletin, 25, 25-26.

ABSTRACT: As a rehabilitation occupational therapist, I have worked with many people who are struggling through the adjustment period that follows an illness or injury. These people often discover that their illness or injury has forced many changes in their lives over which they have no control Loss is commonly experienced with illness and injury; such as loss of the ability to do things, loss of the way life used to be, as well as the loss of future plans.