RP: A SLOW, PERSONAL CATASTROPHE
by Barbara A. Siple

(Editor's Note: Dr. Barbara Siple is a licensed clinical psychologist at Counseling and Psychological Services, Edinboro University of Pennsylvania. She can be contacted at [email protected])

"It is much harder going blind than being blind," stated a 75-year-old man who is blind from retinitis pigmentosa (RP). RP is a group of degenerative disorders of the retina that cause progressive vision loss, usually leading to blindness. RP is characterized by night blindness, tunnel vision, and poor light adaptation. Because of the prolonged course, RP may be regarded as a slow personal catastrophe.

There are significant and unique psychological implications for adjusting with RP. Typically, individuals with RP have low vision for many years of their lives. They are neither sighted nor blind, but fall into the ambiguous category of "visually impaired." Therefore, people with RP routinely find themselves in limbo.

Perhaps the most challenging aspect of RP is its unpredictable course. There is no way of knowing how long one's vision will be maintained or when there will be subtle or precipitous declines. Thus, as vision changes, there are choices in terms of how to cope. Individuals who navigate the RP course manage the choice points differently. These differences in coping responses were the focus of my dissertation research.

To provide a framework for understanding adjusting with RP, the Transtheoretical Model of Change (TMC) was used. The TMC involves a progression through five stages: pre-contemplation, contemplation, preparation, action, and maintenance. The pre-contemplation stage is characterized by resistance; there is denial that a behavioral problem exists and there is no behavior change. There is recognition of a problem in the contemplation stage, but there is still no behavior change. In the preparation stage, there is intent to change and behavior may begin to change. During the action stage, overt steps are taken to modify the target behavior. During the maintenance stage, there is continuous behavior change for at least six months.

The TMC is easily applied to the RP population. Participants who had no intention of making any modifications in their day-to-day lives were classified as being in the pre-contemplation stage. Those who were not using effective strategies to cope with their visual impairment but were seriously considering doing so in the next 6 months fell into the contemplation stage, while those who intended to make changes were in the preparation stage. Participants who were actively changing their lives to incorporate effective coping strategies were in the action stage and those who had successfully maintained use of these strategies for more than 6 months were in the maintenance stage.

Research findings have important implications for people with RP and professionals alike. In terms of measuring degree of adjustment, it is the identification of TMC stage that serves as the best barometer. The middle stages (action, preparation, and pre-contemplation stages, respectively) are associated with the lowest adjustment scores. It is during these stages that people with RP struggle the most as they wrestle with the realities of unstable vision. Professionals should be aware that these stages are associated with poorer adjustment and provide interventions which facilitate adaptive coping skills and a strong support network.

In terms of avoidance and approach coping responses, participants relied on both styles to manage their loss of vision throughout the five TMC stages. Avoidance coping responses remained stable throughout the first four stages, while approach coping responses were used more heavily during the latter stages. Thus, adults with RP can be educated about specific approach and avoidance coping strategies that may benefit them throughout the course of RP. For example, avoidance coping responses, such as distraction, passivity, positive reinterpretation, wishful thinking, and venting negative emotion may facilitate adaptive functioning and are not necessarily maladaptive. Avoidance responses can be helpful because they allow time to integrate information about the impending situation, prevent anxiety from becoming overwhelming, and reduce stress.

Approach strategies create opportunities for appropriate action or to make the situation more controllable. For example, it seems logical that approach coping responses, such as seeking information about the situation, being vigilant about managing the condition, or identifying a plan and putting the plan into action would be implemented during the action and maintenance TMC stages. Therefore, the temporal markers supplied by the TMC stages can be effectively utilized to assess the particular location of a person with RP. Once the person's location is identified, then guidance can be provided to employ these and other approach strategies.

Finally, it appears that behavioral methods of coping are incorporated and utilized as individuals with RP continue to use cognitive methods. While individuals with RP move from pre-contemplation through action stages, it is apparent that they are increasingly thinking about how to negotiate behavior change as they cope with the repercussions of RP. Once adaptive behaviors are put into place and become well practiced, there appears to be less of a need to rely on cognitive coping strategies. These behavioral responses may translate into activities which foster a sense of mastery over the situation. The acquisition of new skills is initiated in order to compensate for low vision. These steps toward mastery may be perceived as "controlling" the situation even though the progression of the disease itself cannot be controlled.

In conclusion, there are practical applications of the TMC for individuals with RP and professionals who work with them. For professionals who provide services to adults with RP, they should understand the process of change and how to identify an individual's location in that process using the TMC. Timely and stage-appropriate interventions should be implemented to promote social and emotional adjustment, as well as address the practical dimensions of low vision. For example, professionals must know that before individuals can move from early TMC stages to action, they must perceive change to be in their best interest. A newly diagnosed adult with RP undoubtedly requires time to digest the meaning of, and actually experience what it is like, living with RP before being referred for rehabilitative services. Goals must be realistic; that is, a three-month vision rehabilitation program is not compatible with a person in the pre- contemplation stage, but is appropriate for the preparation or action stages. Ideally, goals should be sequenced and tailored as the person with RP moves through the process of adjustment.


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