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Coping Responses of Adults With Rp

Editor's Note: Dr. Barbara Siple is a licensed clinical psychologist at Counseling & Psychological Services, Edinboro University of Pennsylvania. She can be contacted at: bsiple@edinboro.edu

Retinitis Pigmentosa (RP) is a group of degenerative disorders of the retina that cause progressive vision loss, usually leading to blindness. It is characterized by night blindness, tunnel vision and poor light adaptation.

There are significant and unique psychological implications for adjusting with RP. Typically, individuals with RP have low vision for many years. They are neither sighted nor blind; they fall into the ambiguous category of the "vision-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 vision will be stable or when there will be subtle or precipitous declines. As vision changes, coping choices continually present themselves.

People 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, I used the Transtheoretical Model of Change (TMC), which describes coping/change as a progression through five stages--precontemplation, contemplation, preparation, action and maintenance.

Participants who had no intention of making modifications in their day-to-day lives were classified as being in the precontemplation stage (denial). Those who were not using effective coping strategies to deal with vision loss but were seriously considering doing so in the next six months were classified in the contemplation stage (recognition), while those who intended to change their behaviour fell into the preparation stage. The action stage was attributed to participants who were actively changing their lives to incorporate effective coping strategies, and the maintenance stage was linked with those who had successfully maintained use of these strategies for at least six months.

Study results have important implications for persons 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 TMC stages (action, preparation and precontemplation respectively) are associated with the lowest adjustment scores. During these stages, persons 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 that 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 TMC stages of behaviour change, while approach coping responses were used more heavily during the latter TMC stages.

People with RP can be educated about specific approach and avoidance coping strategies that may benefit them throughout the course of RP.

Avoidance coping responses such as distraction, passivity, positive reinterpretation, wishful thinking and venting negative emotion, for example, 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. It seems logical, for instance, that approach coping responses such as seeking information about the situation, being vigilant about managing the condition, or identifying a plan and putting it into action would be implemented during the action and maintenance TMC stages. 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 behavioural methods of coping are incorporated and utilized as individuals with RP continue to use cognitive methods. While individuals with RP move from precontemplation through action stages, they are increasingly thinking about how to negotiate behaviour change as they cope with the repercussions of RP. Once adaptive behaviours are put into place and become well practiced, there appears to be less of a need to rely on cognitive coping strategies.

These behavioural responses may translate into activities that foster a sense of mastery over the situation. The acquisition of new skills, for example, may 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 those who provide services to adults with RP, it is important to understand the process of change and how to identify one'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. 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, for example, 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, furthermore, must be realistic. A three-month vision rehabilitation program is not compatible with a person in the precontemplation stage, for instance, but is appropriate for the preparation or action stages. Ideally, goals should be sequenced and tailored to a person's movement through the adjusting process.