ADJUSTMENT TO DISABILITY: Amputations

Erika Zipf-Williams, Ph.D.

Adjustment
Adjustment is defined as adapting to a new condition. Adjustment is a normal part of life. Some are planned, which allows for preparation Some traumatic

Coping Skills
Coping skills are the behavioral tools which we use to offset or overcome adversity, disadvantage, or disability without correcting or eliminating the underlying condition.

Predictors of Adjustment
How well one has coped with past adversity in their life is the best predictor of how one will cope with any new problem.

Psychosocial Predictors of Adjustment

Perception of disability severity (how much can I do for myself) Self-esteem (premorbid level plays a big role) Social skills Social support (new and old friends and family)

Factors Affecting Adjustment after Amputation

Body image, perceived social stigma, perceived vulnerability, social support and optimism account for psychological adjusment post amputation more than residual limb pain and activity restrictions. Psychological factors and coping strategies that are associated with poor outcome post amputation are catastrophizing, avoidance and helplessness. Females tend to rate the importance of the aesthetic components of the prosthesis more highly, while males rate the importance of the functional aspects more highly. Post rehabilitation, however, males shifted and found their prosthesis less aesthetically pleasing.

Adjustment issues and Type of Amputation

Upper extremity amputations are considerably less frequent than lower extremity amputations. Less available peer group for UE amputees than LE amputees, leading to a sense of isolation. UE amputees cannot hide their prosthesis as easily, thus affecting body image differently. Greater likelihood of UE amputation being traumatic than LE.

Family
Experience a loss of the way their life was before the injury. Take on new roles caregiver, bread-winner. Experience different views of what happened (relief, guilt, anger)

Adjustment Models
Stage theories Recurrent/Ongoing cycle models

Stage Models
Three Common Stages:
Initial period of shock and/or denial Significant Distress Acceptance of ones situation

Stage Models
Despite the number of stage models that exist, adjustment is not a linear process. One can slip back and forth between stages, remaining longer in one stage than another. Hopefully, one will progress to a final stage where he/she accepts his/her disability.

Stage Model Theorists

Falek and Britton (Shock and Denial, Anxiety, Anger and/or Guilt, Depression, Acceptance) Kerr (Shock, Expectancy of Recovery, Mourning, Defense (Healthy or Neurotic), Adjustment) Kubler-Ross (Denial, Anger, Bargaining, Depression, Acceptance) Krueger (Shock, Denial, Depressive Reaction, Reaction Against Independence, Adjustment)

Shock
The period immediately following the injury. Experienced as a state of numbness, both physical and emotional An inability to integrate the severity of the injury. This phase is generally experienced in the very acute phases of the injury/amputation.

Denial
Denial is used by all and it allows one to slowly introduce the seriousness of what one is having to cope with. Denial is used because the current stressor is beyond the capacity of the individual to emotionally tolerate. Denial is only maladaptive/dysfunctional when it interferes with treatment/rehabilitation efforts (e.g., dont want to learn to use crutches). Examples of denial include believing it will all get better or forgetting to inspect the stump (Once I have the prosthesis, ).

Depression
As denial diminishes, grief and depression emerge. Depression often presents as withdrawal and hostility. Hostility, anger and blame are often directed at family and staff. This should not be taken personally, but this is the point where the patient needs help with directing the anger and hostility more appropriately. Understanding the patients pre-injury self esteem and coping mechanisms will allow the clinician to assist the patient in incorporating the injury into the patients sense of self and in more appropriately directing anger and frustration.

Anger/Hostility/Dependency
These symptoms tend to be pronounced in adolescence, where autonomy and independence is not fully resolved. They can become upset at any limits placed on their independence, as well as have a need to fall back on being dependent. The more passive person, may prefer the sick role.

Patient Distress & Staff Reactions

This time of stress is when responses or reactions are pulled for from staff. Annoyance feelings can lead staff to feel like terminating therapy. Mothering feelings can lead staff to provide more assistance than is appropriate for the patient.

Patient Distress & Staff Reactions

As a psychologist, educating staff as to why the behavior is present is necessary. There will likely become a need for the team to place limits, with clear expectations and consistency is very important at this point in treatment.

Adjustment/Acceptance
Acceptance does not mean one is happy about his/her disability. Acceptance means one can realistically plan and effectively cope with his/her disability. The early phase of acceptance is working with the here-and-now. There is no need to take away hope. (e.g., for now we need to learn to use a wheelchair outside, but this does not mean you will have to rely on this forever).

Adaption
Once grief and mourning of the loss are complete and one relinquishes false hopes, one can develop a new role with new potentials based in realistic limitations. Individuals with disabilities need to learn to give credit to themselves for what they can do in the face of their limitations. Stop comparing to their pre-disability self.

Recurrent/Cycle Model (Kendal & Buys)

Adjustment is viewed as a gradual process of learning to tolerate an almost intolerable circumstance. Seen as a continuous life transition rather then a time-limited process. Involves the development of new cognitive schemas (Beck), which is how one views oneself relative to others and the environment Through the development new cognitive schemas the disabled person is thought to work through several themes:
The search for meaning in the disability The need for a sense of mastery and control over the environment, the disability and the future. The effort to create a new self and a post-disability identity.

Recurrent/Cycle Model (Kendal & Buys)

Adjustment is a unique process by which one experiences continual peaks and troughs as one seeks to redefine oneself in the face of his or her disability. The implications this model clinically is that treatment should be considered more long-term and as available as needed and not necessarily as completed in a certain time.

Comorbid Psychiatric Disorders

Adjustment Disorder

Major Depressive Disorder Post Traumatic Stress Disorder

Axis II/Personality Disorders

Adjustment Disorder
An adjustment disorder is a debilitating reaction, usually lasting less than six months, to a stressful event or situation. Adjustment Disorders Subtypes: Depressed Mood Anxiety Mixed Anxiety/Depressed Mood Disturbance of Conduct Mixed Disturbance of Emotions and Conduct Unspecified

Major Depressive Disorder

A. At least five of the following and must include depressed mood and loss of interest or pleasure. (1) depressed mood most of the day, nearly every day (2) markedly diminished interest or pleasure in all activities most of the day, nearly every day (3) significant weight loss or weight gain (4) insomnia or hypersomnia nearly every day (5) psychomotor agitation or retardation nearly every day (6) fatigue or loss of energy nearly every day (7) feelings of worthlessness or excessive guilt (8) diminished ability to think or concentrate (9) recurrent thoughts of death

Major Depressive Disorder (Cont.)

The symptoms are not due to the direct physiological effects of a substance (e.g., a drug of abuse, a medication) or a general medical condition (e.g., hypothyroidism). The symptoms symptoms persist for longer than 2 months or are characterized by marked functional impairment, morbid preoccupation with worthlessness, suicidal ideation, psychotic symptoms, or psychomotor retardation.

Acute Stress/Post Traumatic Stress Disorder

A. The person has experienced, witnessed, or was confronted with an event that involved actual or threatened death or serious injury. The person experienced intense fear, helplessness, or horror. B. The traumatic event is reexperienced (1) recollections (2) dream/nightmares. (3) feeling as though the traumatic event were recurring-flashbacks (dissociative) (4) intense psychological distress at exposure to cues C. Persistent avoidance of stimuli associated with the trauma and numbing of general responsiveness

Resources/Interventions For Amputees

1:1 psychotherapy with psychologist or counselor trained in rehabilitation and adjustment issues. Pain management Peer/Support Groups Psychoeducational classes Family support Vocational Training

References
Cavanagh, S.R., Shin, L.M., Karamouz, N., Rauch, S.L. (2006). Psychiatric and Emotional Sequelae of Surgical Amputation. Psychosomatics, 47, 459-464. Kendall, E. & Buys, N. (1998). An Integrated Model of Psychosocial Adjustment Following Acquired Disability. Journal of Rehabilitation, 64 (3), 16-20 Krueger, D.W. (1981-1982). Emotional Rehabilitation of the Physical Rehabilitation Patient. The International Journal of Psychiatry in Medicine, 11 (2), 183-191. Morris, R.M. (2008). Therapeutic Influences on the UpperLimb Amputee. The Academy Today, A4-A7. Murray, C.D., & Fox, J. Body Image and Prosthesis Satisfaction in the Lower Limb Amputee. Peters, E.J., Childs, M.R., Wunderlich, R.P., Harkless, L.B., Armstrong, D.G., & Lavery, L.A. (2001). Functional Status of persons with Diabetes-Relates Lower-Extremity Amputations. Diabetes Care, 24 (10), 1799-1804