Growth and adaptation

The clinician must keep in mind the context from which the client is coming. Just days or even hours ago the individual may have been going about daily life without difficulty. The trauma may be multifaceted: (1) physical trauma, (2) emotional trauma occurring to the individual’s support system, and (3) trauma of each of these systems interacting (the support system trying to protect the individual, and the client trying to protect the support system). The interaction of these multifaceted components of the trauma may lead to posttraumatic distress syndrome. This syndrome usually happens within the first 6 months after the injury. This syndrome may be observed more often in women³⁹ but because of cultural barriers it can be hidden in men. It happens more often when there has been a near-death situation.^40,41 The client may blame others, try to protect others, or be so self-absorbed that little else in the world may be seen or heard. It may be helpful to get psychological help for the individual early in therapy if this is preventing optimal outcomes or creating obstacles in therapy.^4,15,42–45

It is the therapist’s job to develop a trusting relationship with the client. Through this relationship the individual can be guided to focus on the goals of therapy and work on a positive perspective about the future. One of the errors of the medical system is that of focusing on the disease outcomes and pathology and not on the person and the positive capabilities still within the individual’s grasp.¹⁹ This focus on the negative or loss may cause the individual to see only the injury, disease, or pathological condition and nothing else. In a Veterans Administration hospital, spouses of people with spinal cord injuries formed a group in which the group’s focus was on why the partners got married in the first place; the group never looked at the physical limitations as disabling. After a little while people came to the conclusion that they did not marry their spouses for their legs and the fact that the legs no longer worked was not a major issue after all. This started the decentering from the medical disability model and the focus started to be placed on the people and the families’ future. If we can help clients focus on their functions and not their dysfunctions, the effect of therapy after treatment will be much better. More work needs to be done to help clients see the potential they will have in the future to live their lives with the highest quality possible.^34,46–50 The World Health Organization developed a model that differentiates the disease pathology model of medicine and focuses on individuals’ activities in life and the ability to participate in those interactions. This model, the International Classification of Functioning, Disability and Health (ICF), has been enthusiastically accepted by the therapy world, and the professions of both occupational and physical therapy use it as a reference model for practice.

Focusing on how to participate, move, and function in the world is one of the keys to helping the client and the family work toward its future.^{33,49,51–54}

The therapist needs to help the client focus on the direction of treatment objectives and to demonstrate how therapy translates into meeting the client’s goals.^19,55 To discover the client’s true goals, the therapist must gain the trust of the client and establish sound lines of communication. Distrust from health professionals may obstruct the adjustment process and lead to negative consequences.⁵⁶ Whenever possible, the client’s support system should be enlisted to help establish realistic support for the client and the goals of both the client and the family. It has been found that if the client trusts the health professional, the client will be more adherent and will seek assistance when it is needed (see Chapter 5 for additional information).^57,58

A new normal

When we experience a decline in our ability to carry out our everyday routine tasks, regardless of the cause of our “disability,” we may experience incredible degrees of despair. Many societies emphasize a very specific idea of what it means to be normal. There doesn’t appear to be a great deal of flexibility in what this standard of normal is, regardless of one’s cultural background. When an individual fails to live up to or no longer fits this norm, there can exist a tremendous amount of mental and emotional suffering. Because our bodies and minds are so intricately connected, our physical being is adversely affected by the mental and emotional anguish. On top of what the individual may already be experiencing physically, suddenly there is another layer of mental-physical anguish that is far too easily ignored and unattended to by clinical professionals. However, once we are aware of the multifaceted potential for human suffering with regard to adjusting to a disability, we may be empowered to assist the individual with a nonlinear, multifaceted approach. Researchers and theorists from various psychotherapy traditions have begun to explore the potential value of the therapeutic relationship by making direct references to different levels of validation as a means of demonstrating warmth, genuineness, empathy, and acceptance and reiterate how important it is for therapists to reflect back to the patient that their feelings, thoughts, and actions make sense in the context of their current experience. The therapist articulates an expectation that the treatment collaboration will be effective in an attempt to convey hope and confidence in their ability to work together.⁵⁹

We can guide our clients in identifying a new normal for themselves, all the while allowing them and their support system to grieve the loss of the old normal. As the Harvard psychologist Ellen Langer described in her book Mindfulness, “if we are offered a new use for a door or a new view of old age [or disability], we can erase the old mindsets without difficulty.”⁶⁰ We can offer our clients a new view of themselves by showing them what they are capable of as they rebuild their lives. We can also help them acknowledge what is present in this moment and what the reality of the situation is. This does not have to be a problem to be suffered over but is a situation to be dealt with carefully and fully in the present moment. A woman who has lived with multiple sclerosis for over 30 years described how the relief of suffering does not require restoring physical function to some perceived level of normality. “Suffering is relieved to the extent that patients can learn to integrate bodily disorder and physical incapacity into their lives, to accommodate to a different way of being” (p. 591).⁶¹ According to research by De Souza and Frank,⁶¹ their subjects with chronic back pain expressed regret at the loss of capabilities and distress at the functional consequences of those losses. They found that facilitating “adjustment” to “loss” was more helpful than implying the potential for a life free of pain as a result of therapeutic interventions.

Guiding the individual through practice and repetition of basic functional activities will allow the client to identify for himself or herself how to live successfully in this world again and cultivate this “different way of being.” At the same time we can encourage these clients to mindfully plan for and visualize their future (see practice later) during specific times of their day so that their minds are not in constant worry mode or rehearsing, which can cause a great deal of anxiety about the future. We can assist our clients in planning for that future, especially in a medical environment where shorter rehabilitation stays are the norm.

Without any need to apologize for their loss, just simply being with them in the moment in a nonjudgmental way and allowing them to grieve can be a powerful tool for healing. Acknowledging the loss and the suffering may help clients move forward with their lives in a new way. “Acceptance [of what is] doesn’t, by any stretch of the imagination, mean passive resignation. Quite the opposite. It takes a huge amount of fortitude and motivation to accept what is—especially when we don’t like it—and then work wisely and effectively as best we possibly can with the circumstances we find ourselves in and with the resources at our disposal, both inner and outer, to mitigate, heal, redirect, and change what can be changed.”⁶²

Societal and cultural influences

Culture, subcultures, and the culture and beliefs of the given family are all aspects of the client that the therapist must be aware of.^{22,52,63–69} This concept gets into the beliefs about the world and maybe a belief about the cause of the disability or at least how the client is viewing the disability. Asking “why do you think this happened to you?” can lead to an enlightening experience. “Causes” may range from “God is punishing me” to “I deserved it” to “life is against me.”

From an early age, people in our society are exposed to misconceptions regarding the disabled person.70–73 If in the therapeutic environment, however, the client and family have their misconceptions challenged constantly, they may start reformulating their concept of the role of the disabled person. As this process progresses, therapists and other staff can help make the expectations of the disabled person more realistic. Therapists can schedule their clients at times when they will be exposed to people making realistic adjustments to disabilities. Use of individuals who have been successfully rehabilitated as staff members (role models) can help to dispel the misconception that people with disabilities are not employable.^74–76

This process of adaptation to a new disability can be considered as a cultural change from a majority status (able bodied) to a minority status (disabled). Part of the adaptation process can be considered as an acculturation process, and the therapist can help facilitate this process.^16,72,77,78

The cultural background of the individual also contributes to the perception of disability and to the acceptance of the disabled person. Trombly⁷⁹ states that perception and expression of pain, physical attractiveness, valuing of body parts, and acceptability of types of disabilities can be culturally influenced. One’s ethnic background can also affect intensity of feelings toward specific handicaps, trust of staff,⁷⁹ and acceptance of therapeutic modalities.^80–84

The successful therapist will be sensitive to the cultural values of the client and will attempt to present therapy to the client in the most acceptable way. For example, in the Mexican culture it is not polite to just start to work with a client; rapport must first be established. Sharing of food may provide the vehicle to accomplish rapport. Thus, the therapist might schedule the first visit with a Mexican client during a coffee break. The therapist must remember that the dysfunctional client may be the one who can least be expected to adjust to the therapist and that the therapist may need to adjust to the client, especially in the early stages of therapy.

Gaining trust is one of the crucial links in any meaningful therapeutic situation.^58,85,86 Trust will create an environment that facilitates communication, productive learning, and exchange of information.^75,86 Trust is important in all cultures and will be fostered by the therapist who is sensitive to the needs of the client. This sensitivity is necessary with every client but will be manifested in many different ways, depending on the background and needs of the individual in therapy. A client of one culture may feel that looking another person in the eyes is offensive, whereas in another culture refusal to look into someone’s eyes is a sign of weakness or lack of honesty (shifty eyed).⁸⁷ Thus although it is impossible to know every culture or subculture with which the therapist may come into contact, the therapist must attempt to be sensitive to the background of the client. Even if the therapist knows the cultural norms, not every person follows the cultural patterns, and thus every client needs to be treated as an individual in the therapeutic relationship. It should be the therapist’s job to be sensitive to the subtle nonverbal and verbal cues that indicate the level of trust in the relationship. The therapist will obtain this information by being open to the client, not open to a textbook. The client is the owner of this information and will share it with everyone he or she trusts.

Trust is often established in the therapeutic relationship through physical activities. The act of asking a client to transfer from the chair to the bed can either build trust or destroy the potential relationship. If the client trusts the therapist just enough to follow instructions to transfer but then falls in the process, it may take quite some time to reestablish the same level of trust, assuming that it can ever be reestablished. This trusting relationship is so complex and involves such a variety of levels that the therapist should be as aware of attending to the client’s security in the relationship as to the physical safety of the client in the clinic.^58,85 If the client believes that the therapist is not trustworthy in the relationship, then it may follow that the therapist is not to be trusted when it comes to physical manipulation of a disabled body. If the client does not know how to use the damaged physical body and thus cannot trust the body, then lacking trust in the therapist will only compound the stress of the situation.^58,85,88 Chapter 8 provides more information on the neurological components of this interaction during the intervention process.

The client’s culture may be alien to the therapist, even though both the clinician and client may be from the same geographical region. A client’s problems of poverty, unemployment, and a lack of educational opportunities^76,86,89,90 can all result in the therapist and client feeling that therapy will be unsuccessful, even before the first session has begun. Such preconceived concepts held by both parties may not be warranted and must be examined. These preconceived concepts can be more reflective of failure of rehabilitation than any physical limitation of the client.

Cultural and religious values may also result in the client feeling that he or she must pay for past sins by being disabled and that the disability will be overcome after atonement for these sins. Such a client may not be inclined to participate in or enjoy therapy. The successful therapist does not assault the client’s basic cultural or religious values but may recognize them in the therapy sessions. If the therapist feels that the culturally defined problems are impeding the therapeutic process, the therapist may offer the client opportunities to reexamine these cultural “truths” in a nonjudgmental way and may help the client redefine the way the physical limitations and therapy are seen.⁹¹ Religious counseling could be recommended by the therapist, and follow-up support in the clinic may be given to the client to view therapy not as undoing what “God has done” but as a way of proving religious strength. Reworking a person’s cultural and religious (cognitive) structure is a sensitive area, and it should be handled with care and respect and with the use of other professionals (social workers and religious and psychological counselors) as appropriate.

The hospital staff can be encouraged to establish groups in which commonly held values of clients can be examined and possibly challenged.^16,91–97 Such groups can lead the client to a better understanding of priorities and may help the person see the relevance of therapy and the need to continue the adjustment process. This can also prepare the client to better accept the need for support groups after discharge. The therapist may be able to use information from such group sessions to adjust the way therapy sessions are presented and structured to make therapy more relevant to the client’s values and needs. Value groups or exercises⁹⁸ can be another means used by the therapist for evaluation and understanding of the client.

Beliefs and values of cultures and families can play a profound role in the course of treatment. Such things as physical difficulties, which can be seen, are usually better accepted than problems that cannot be seen, such as brain damage that changed an individual’s cognitive abilities or personality.⁹⁹ A person with a back injury may be seen as lazy, whereas a person with a double amputation will be perceived as needing help. At the same time, in some cultures a person who has lost a body part may be seen as “not all there” and should be avoided socially. Therefore being attuned to the culture and beliefs of the client is imperative in therapy. The reader is encouraged to refer to texts on cultural issues in health care such as Culture in Clinical Care by Bonder, Martin, and Miracle¹⁰⁰; Cultural Competence in Health Care: A Practical Guide by Rundle, Carvalho, and Robinson¹⁰¹; and Caring for Patients from Different Cultures by Galanti¹⁰² for more detailed discussions on how culture and beliefs affect health care.

Establishment of self-worth and accurate body image

Self-worth is composed of many aspects, such as body image, sexuality, and the ability to help others and to affect the environment. The body image of a client is a composite of past and present experiences and of the individual’s perception of those experiences. Because body image is based on experience, it is a constantly changing concept. An adult’s body image is substantially different from the body image of a child and will no doubt change again as the aging process continues. A newly disabled person is suddenly exposed to a radically new body, and it is that individual’s job to assess the body’s capabilities and develop a new body image. Because the therapist is at least partially responsible for creating the environmental experiences from which the client learns about this new body, the therapist must be aware of the concept. In the case of an acute injury, the client has a new body from which to learn. The therapist can promote positive feelings as the therapist instructs the client how to use this new body and to accept its changes.^{1,16,20,27,103,104}

Because in “normal” life we slowly observe changes in our bodies, such as finding one gray hair today and watching it take years for our hair to turn totally white, we have the luxury of slowly adapting to the “new me.” Change usually does not happen quite so slowly and “naturally” when trauma or a disease affects the nervous system. This sudden loss of function creates a void that only new experiences and new role models can fill.

The loss of use of body parts can cause a person to perceive the body as an “enemy” that needs to be forced to work or to compensate for its disability. In all cases the body is the reason for the disability and the cause of all problems. The need for appliances and adaptive equipment can create a sense of alienation and lack of perceived “lovability” resulting from the “hardness of the hardware.” People tend to avoid hugging someone who is in a wheelchair or who has braces around the body because of the physical barrier and because of the person’s perceived fragility; a person with physical limitations is certainly not perceived as soft and cuddly.^{20,27,52,102,103} Both the perception that these individuals are not lovable and their labored movements can sap the energy of the disabled and discourage social interaction or life participation. To accept the appliances and the dysfunctional body in a way that also allows the disabled person to feel loved is surely a major challenge.

In the case of a person who will be disabled for the long term, such as the person with cerebral palsy or Parkinson disease, the therapist is attempting to teach the client how to change the previously accepted body image to one that would allow and encourage more normal function. In short, the therapist has two roles. One role is to help lessen the disabled body image. The second is to teach a functional disabled body image to a newly disabled person. The techniques may be the same, but in both cases the client will have to undergo a great amount of change. The person with a neurological disorder or neurologically based disability may assume that he or she will not be capable of accomplishing many things with his or her life. The therapist is in a unique position to encourage development of and maximize the client’s level of functional ability. The individual may then expect more of himself or herself. The newly disabled person must change the expectations; however, he or she has little concept of what is realistic to expect of this new body. At this point, role models can be used to help shape the client’s expectations. If the client is unable to adjust to the new body and change the body image and self-expectations, life may be impoverished for that individual. Pedretti¹⁰⁵ states that the client with low self-esteem often devalues his or her whole life in all respects, not just in the area of physical dysfunction.^{1,16,20,27,103,104}

One way the client can start exploring this new body is by exploring its sensations and performance. Dr. Jon Kabat-Zinn developed a guided “body scan” meditation that can help individuals learn how to become more connected and in tune with the sensations of the body.⁶² This kind of practice is about learning to pay attention to the body in a new way and can be very helpful in developing an accurate body image and improve self-awareness. The client with a spinal cord injury may also use the sensation of touch to “map out” the body to see how it reacts.¹⁰⁶ They may ask themselves the following questions: Is there a way to get the legs to move using reflexes? Can positioning the legs in a certain way aid in rolling the wheelchair or make spasms decrease? What, if anything, stimulates an erection or lubrication? Such exploration will start the client on the road to an informed evaluation of his or her abilities.

The therapist’s role is to maximize the client’s perceptions of realistic body functioning. Exercises can be developed that encourage exploration of the body by the individual and, if appropriate, the significant partner. Functioning and building an appropriate body image will be more difficult if intimate knowledge of the new body is not as complete as before injury.⁹ The successes the client experiences in the clinical setting coupled with the client’s familiarity with his or her new body will result in a more accurate body image and will contribute to the client’s feelings of self-worth.

The last aspect of self-worth is often overlooked in the health fields. This aspect is the need that people have to help others.¹⁰⁷ People often discover that they are valuable through the act of giving. Seeing others enjoy and benefit from the individual’s presence or offering increases self-worth. Situations in which others can appreciate the client’s worth may be needed. Unless the client can contribute to others, the client is in a relatively dependent role, with everyone else giving to him or her without the opportunity of giving back. Achieving independence and then reaching out to others, with therapeutic assistance if necessary, facilitates the individual’s more rapid reintegration into society. The therapist should take every opportunity to allow the client to express self-worth to others through helping.

The ability to expand one’s definition of oneself is a key factor in adjusting to a disability. Expanding the definition of oneself in terms of all the roles and responsibilities one has can help the individual comprehend the enormity of who he or she is. The individual may begin to understand how he or she is so much greater than just the job he or she once performed and so much greater than the role he or she once played. This practice can cultivate understanding of how complex our species is and how much we have to offer the world, differently abled or not (see journal activity, Box 6-1).

Sense of control

As Drs. Roizen, and Oz stated in their book You: The Owner’s Manual, we can control our health destiny.¹⁰⁸ Although we can’t always control what happens to us (no matter how fit we are), there are some things we can control: our attitude, our determination, and our willingness to take our own health into our own hands.¹⁰⁸

Adjusting to a disability can make clients feel as though they have very little control over their lives; they may feel helpless, as though their health is in everyone else’s hands but their own. This feeling can cause incredible suffering and emotional anguish on top of their physical or cognitive disability. If we focus solely on treating the disability and ignore what may be going on for our clients mentally and emotionally, we may be creating even more suffering for them. Clinical professionals have the opportunity to guide their clients toward a new way of relating to their disability by focusing on what they do have control over as well as identifying ways in which they may relate differently to those situations over which they do not have control.

Dr. Jill Bolte-Taylor says this eloquently in a passage from her book:

As Dr. Bolte-Taylor describes, all of us have the choice to be in relation to the present moment fully, or we can allow our thoughts and emotions to “take us for a ride” as though we were on automatic pilot.¹⁰⁹ If we allow our minds and emotions to take over our experience of the present moment, we can easily be dragged along into rehashing our past events that led up to the disability, which can create more suffering and emotional anguish. We also may be rehearsing what our lives will be like without allowing the dust to settle, without waiting until we have a clearer picture of what implications the disability may have for us. An unacknowledged rehashing and rehearsing can create an incredible sense of lack of control over one’s life, thereby increasing anxiety and depression. Approximately 70% of our thoughts in any particular waking state can be considered to be daydreams, and they can often be unconstructive.¹¹⁰ In an experience sampling method, Klinger and his colleagues found that “active, focused problem-solving thought”¹¹¹ made up only 6% of the waking state. According to Baruss, “it would make more sense to say that our subjective life consists of irrational thinking with occasional patches of reason”¹¹⁰ while we are participating in our daily activities. Especially when one is participating in menial, basic self-care activities, our mind is often in another place. If an individual is frequently disconnected from the present moment, tending to ruminate over the past or future events, he or she may experience significant negative effects from this distraction. Rumination, absorption in the past, rehashing, or fantasies and anxieties about the future can pull one away from what is taking place in the present moment. Awareness or attention can be divided, such as when people occupy themselves with multiple tasks at one time or preoccupy themselves with concerns that detract from the quality of engagement with what is focally present, and this can increase anxiety and depression.¹¹²

According to Drs. Oz and Roizen,¹⁰⁸ these emotions can cause high blood pressure, as well as disrupting the body’s normal repair mechanism, and also constrict our blood vessels, making it even harder for enough blood to work its way through the body. They go on to say that learning relaxation techniques such as yoga and meditation can help us handle these damaging feelings in a healthier way. We know now that these mind states affect our bodies profoundly—for example, a feeling of helplessness appears to weaken the immune system.¹⁰⁸ If we can teach our clients to be mindful of and pay attention to their “mind states”—also known as “thoughts”—at any given moment during therapeutic intervention, we may be able to encourage a greater sense of control and facilitate greater mental and emotional adjustment to the individual’s disability. According to a 2008 article by Ludwig and Kabat-Zinn in JAMA, “the goal of mindfulness is to maintain awareness moment by moment, disengaging oneself from strong attachment to beliefs, thoughts, or emotions, thereby developing a greater sense of emotional balance and well-being.”¹¹³ Anat Baniel, in her book Move into Life, describes how research shows that the moment we bring attention and awareness to our movements moment by moment, the brain resumes growing new connections and creating new pathways and possibilities for us.¹¹⁴

According to a research study by Dr. Jon Kabat-Zinn¹¹⁵ of the Stress Reduction Program at the Center for Mindfulness in Medicine, Health Care, and Society, the practice of mindfulness meditation used by chronic pain patients over a 10-week period showed a 65% reduction on a pain rating index. Large and significant reductions in mood disturbance and psychiatric symptoms accompanied these changes and were stable on follow-up. Another study looked at brain imaging and immune function after an 8-week training program in mindfulness meditation.¹¹⁶ The study demonstrated that this short program in mindfulness meditation produced demonstrable effects on brain and immune function. The results of a clinical intervention study by Brown and Ryan¹¹² showed that higher levels of mindfulness were related to lower levels of both mood disturbance and stress before and after the Mindfulness-Based Stress Reduction (MBSR) intervention. Increases in mindfulness over the course of the intervention predicted decreases in these two indicators of psychological disturbance. Evidence has indicated that those faced with a life-threatening illness often reconsider the ways in which they have been living their lives, and many choose to refocus their priorities on existential issues such as personal growth and mindful living.¹¹⁷

These findings suggest that meditation may change brain function and immune function in positive ways. “Meditation” as it is taught in this 8-week program is simply an awareness and attention training: a way of learning how to pay attention in the present moment to our thoughts and emotions and coming to understand how our thoughts and emotions affect our bodies. It may sound simple but actually can be incredibly challenging. However, an instant stress reliever can be bringing awareness to the breath. Deep breathing can act as a mini-meditation and from a longevity standpoint is an important stress reliever.¹⁰⁸ Shifting to slower breathing in times of tension can help calm us and allow us to perform, whether mentally or physically, at higher levels.¹⁰⁸

Another study, focused on Coping Effectiveness Training (CET), consisted of weekly 60-minute psychoeducational group intervention sessions focused into six topic areas and was adapted from the protocol Coping Effectively with Spinal Cord Injury.¹¹⁸ The treatment protocol was structured to provide education and skill building in areas of awareness of reactions to stress; situation appraisal; coping strategy choice; interaction among thoughts, emotions, and behaviors; relaxation; problem solving; communication; and social support.¹¹⁹ There was a significantly positive correlation between the learned coping strategies and the disabled individual’s ability to adjust in a healthy way.

Hope and spiritual aspects to adjustment

Through great suffering there is incredible potential for us to transcend the mental and emotional limits of the physical body. As clinical professionals we need to be aware of this capability. As described by Dr. E. Cassel in the New England Journal of Medicine, “Transcendence is probably the most powerful way in which one is restored to wholeness after an injury of personhood. When experienced, transcendence locates a person in a far larger landscape. The sufferer is not isolated by pain but is brought closer to a transpersonal source of meaning and to the human community that shares those meanings. Such an experience need not involve religion in any formal sense; however, in its transpersonal dimension, it is deeply spiritual.”¹²⁰ Parker Palmer, a writer and teacher, describes it this way: “Treacherous terrain, bad weather, taking a fall, getting lost—challenges of that sort, largely beyond our control, can strip the ego of the illusion that it is in charge and make space for true self to emerge.”¹²¹ Eckhart Tolle describes the ego as complete identification with form—physical form, thought form, emotional form.¹²² The more we are identified with the physical realm, the more we will suffer when our attachment to stuff or “form” becomes torn.

“For all of us, our willingness to explore our fears, to live inside helplessness, confusion, and uncertainty, is a powerful ally. Acknowledging our repeated exposure to human suffering—our own and others’—and the seductive draw of numbness and melancholy that provides temporary escape is necessary if we are to be renewed.”³² Dr. Santorelli goes on to say that “there is no way out of one’s inner life, so one had better get into it.”³² “On the inward and downward spiritual journey, the only way out is in and through.”¹²¹

Adjustment using the stage concept

Each person has his or her own coping style, and each should be allowed to be unique. Kerr¹³³ describes five possible stages of adjustment:

In light of current research, it is important for the therapist to realize that these are not lockstep stages and are to be thought of as concepts to help with the understanding of common reactions of all individuals.^134,135 Some individuals may settle in one stage for quite some time or may even skip stages altogether, whereas others may move through the stages quickly. This is an incredibly individual process.

Body image

“Self-care is never a selfish act—it is simply good stewardship of the only gift I have, the gift I was put on this earth to offer to others. Anytime we can listen to true self and give it the care it requires, we do so not only for ourselves but for the many others whose lives we touch.”¹²¹

Body image is an all-encompassing concept that looks at how the person and to some extent the support systems view the person and roles that are expected to be assumed. Taleporos and McCabe²⁰ found that clients had negative feelings about their bodies and general negative psychological experiences after injury. Even when clients do not have disfigurements that are readily observable, they often still report changes in body image and negative feelings of self-worth.

One of the issues that may arise relating to body image is sexuality. This concept may take many behavioral forms: flirting, harassment, questions about fertility, or questions regarding whether the client is capable of performing the sex act at all. Flirting may be a sign that clients have had assaults on their femininity or masculinity. By flirting, clients are often trying to determine whether they still are seen as a sensual being. In this case the therapist may need to set boundaries by saying that he or she is not allowed to date or flirt with clients. This is to make sure that the client does not think that it is something about the disability that is the “turnoff.” Sensitivity must be used because the client could think that “if a medical person finds me repulsive then no one will ever see me as attractive.” It is important for the therapist to try to ascertain the intent behind the behavior. Usually this can be accomplished by evaluating how he or she feels about the interaction. If the therapist feels unthreatened and does not feel demeaned when the client is flirting, he or she still needs to report this to the therapist of record. If the therapist feels defensive, demeaned, or very uncomfortable, then he or she may be experiencing harassment. It is never warranted or “part of the job” to be harassed, and the client’s behavior must be stopped immediately by alerting the client that the behavior is making the therapist feel uncomfortable and that it must stop now. Again, the therapist needs to go to the supervisor or team to mention this behavior. It can often be the case that other team members are experiencing the same behavior and it can be dealt with as a team. If the behavior is considered a chronic problem by the team, a treatment plan needs to be designed to stop the behavior. It is important to remember that sexual health should not be a neglected area of client treatment. It may take time for the appropriate questions to be asked by the client.^28,144–148

Questions about any physical performance are within the domain of therapy. If the client is asking for information regarding sex (e.g., positioning options) it is a subject that needs to be addressed in a respectful manner. If the questions are regarding fertility, capability, and the like, then these should be referred to an appropriate medical person. None of these questions should be discouraged or neglected, because this area is important for your clients’ motivation and sexual health.^149,150 It is important for the therapist to know that in spinal cord injury, fertility will generally not be impaired for a woman, but issues of lubrication before sex should be addressed by the appropriate person. Men may have erection problems and ejaculation issues, but these too can be addressed by the appropriate person. It is now known that fertility in spinal cord–injured men may be possible and should not be ruled out.^{146,151–154}

Awareness of sexual issues

Sexuality is usually one of the last areas to be assessed by clinical staff, but it is one area mentioned as having great importance to family members and the client.⁸³,^104,155,156 Sexuality involves more than just the sex act; it incorporates characteristics such as sexual attraction, sexual identification, sexual confidence, and sexual validation.^104,155,156 It is a predictor of adjustment to disability, of success in vocational training, and of marital satisfaction when the woman is disabled.^{28,73,147,148,156–162}

Sexuality (sensuality) is representative of how the person is dealing with his or her world. If the person feels inadequate as a sexual, sensual, and lovable human being, there is little chance that the person will also feel motivated to pursue other avenues of life.^83,156,163 This area of function must be assessed with great sensitivity to the individual’s feelings.^{143,148,163–165}

The framework for assessing sexuality differs with the therapist. Some therapists see sexuality as an activity of daily living and incorporate it into the evaluation. Others feel the client needs information about body mechanics to perform the sex act; thus positioning and reflex inhibiting patterns are assessed. Still others have found it a motivating force when range of motion and muscle control are worked on. A further discussion of these concerns follows in the section on adult sexuality.

Support system

Earlier literature hinted that partner relationships may be negatively affected by a member being disabled. Within the last few years this concept has been questioned in regard to some disabilities such as adult-onset spinal cord injuries,¹⁸⁹ whereas pediatric spinal cord injury and other disabilities may result in relationship problems.^191,192 It has been shown that adjustment and quality of life can be adversely affected by the physical environment being inadequate, thus making the person more dependent. The result of the dependence appears to be poor relationships.^193–195 This can also be seen with the families in which a member has had a brain injury.^196,197 In studies on muscular dystrophy it was found that physical dependence is not the only variable needing to be considered. Psychological issues need to be identified and considered as part of intervention.^198,199 Recent literature has identified a number of elements that the client and the family may need help to work on, such as “to assist them to develop new views of vulnerability and strength, make changes in relationships, and facilitate philosophical, physical and spiritual growth.”¹⁹⁸ Turner and Cox¹⁹⁸ also felt that the medical staff could facilitate “recognizing the worth of each individual, helping them to envision a future that is full of promise and potential, actively involving each person in their own care trajectory, and celebrating changes to each person’s sense of self.”¹⁹⁸ Man¹⁹⁹ observed that each family copes differently in relation to a brain-injured family member and that the family’s structure should be explored to develop intervention guidelines. It has also been noted that health care professionals should view the situation from the family’s perspective to approach and support the family’s adaptation.²⁰⁰ This should be done to help the client and the family accept the disability but at the same time to help them keep the negative views of society in perspective.⁷⁰ In general, it has also been found that family support is a significant factor in the client’s subjective functioning^201,202 and that social engagement is productive.^89,203 According to Franzén-Dahlin, Larson, and colleagues,²⁰⁴ enhancing psychological health and preventing medical problems in the caregiver are essential considerations to enable individuals with disabilities to continue to live at home. Their research found that evaluating the situation for spouses of stroke patients was an important component when planning for the future care of the patient.

When working with children it is important to realize that they often feel responsible for almost anything that happens in life, such as divorce, siblings getting hurt, or general arguments between parents. It is important that the therapist help the client and the siblings realize that they are not responsible for the client’s condition. Part of this magical thinking that often appears is the concept that “bad things happen to bad people.” Thus, the child is bad because a bad thing has happened or the adult is bad just because the disease or trauma has occurred. It is important to be sensitive to this ideation and help dispel this maladaptive thought pattern because it is not true or productive for the client, the siblings, parents, or spouses within a family and may cause further adjustment problems later in treatment. Siblings of the client should be helped to see their roles as good siblings and should not be placed in the role of caretakers of a sibling with special needs. In this way all children can grow naturally without any one of the children being overly focused on. At the same time, it is a fact of life that the disabled child will probably need physical assistance, therapy, increased medical care, and thus more time devoted to him or her, and this is just a fact of life.

It should always be noted by the medical establishment that having a disability is expensive in ways that we are often not aware of. There are the obvious medical costs of therapy, surgery, drugs, wheelchairs, or orthoses, but there are other costs such as the possibility of extra cost of transportation, catheters for urination, wheelchair maintenance, adaptive clothing, and the like that are continuing costs not covered by most insurance plans. These costs add up and contribute to the emotional costs and demands on the family. The significant others may feel the need to work more to have the money to cover such expenses, but then that person is not around to help out. This is but one of the many dilemmas that must be acknowledged for the support system of the disabled person. The family may be encouraged to contact such groups as the Family Caregiver Support Network (www.caregiversupportnetwork.org) to get information and assistance with such diverse topics as being a caregiver, legal and financial aid, and communications (this group tends to focus on the adult but still may be a wonderful aid). Such groups will give information to all who need it and help to empower the family. This takes the focus off of the medical condition and may help the family to gain a better, more balanced perspective on the condition.

Loss and the family

In this chapter the client’s support system is referred to as the family. The family may be composed of spouses, parents, children, lovers (especially in gay and lesbian relationships), friends, employers, or interested others such as church groups, civic organizations, or individuals. The people in the support system may go through the same stages of reaction and adjustment to loss that the client does.^{1,9,141,205–207}

Coping with transition

In the acute stage of a family member’s injury, the family must be helped to deal with the crisis at hand. During this phase, the family must first be allowed to cope with the emotional impact of what is happening with a loved one. Second, the family should be helped to see the situation as a challenge that if overcome will facilitate growth. Third, adaptation within the family unit must occur for the situation to be overcome.

Brammer and Abrego²²⁴ have developed a list of basic coping skills that they have broken into five levels. In the first level the person becomes aware of and mobilizes skills in perceiving and responding to transition and attempts to handle the situation. In the second level the person mobilizes the skills for assessing, developing, and using external support systems. In level three the person can possess, develop, and use internal support systems (develop positive self-regard and use the situation to grow). The person in level four must find ways to reduce emotional and physiological distress (relaxation, control stimulation, and verbal expression of feelings). In level five the person must plan and implement change (analyze discrepancies, plan new options, and successfully implement the plan). Using this model, the therapist and family can evaluate the coping skill level of the family. The therapist and staff can then help promote movement toward the next level of coping with the transition. These levels are also broken into specific skills and subskills so that the therapist can grade them further.

One of the more damaging aspects of hospitalization to all involved is that the hospital staff focuses on the disability rather than on the individual’s strengths.^76,206,225 Centering on the disability can lead to a situation in which client, family, and staff see only the functional limitations and not the potential ability of the client.

Decentering from the loss of function will be examined further in this chapter. If the family relationship was positive before the insult and if the client is cognitively intact, then the focus must be directed toward the relationship’s strengths as well as toward the client’s and family’s individual cognitive and emotional strengths.⁹¹ In the initial acute stage of adjustment, crisis intervention may help the family use its strengths and at the same time deal with the situation at hand.

To adequately deal with the crisis, the family should do the following:

Specific therapeutic interventions

“Engagement in leisure-like activities may not only help people ‘feel better’ in the immediate context of coping with rehabilitation treatments, but may help sustain coping efforts as individuals learn to live with ongoing functional limitations.”²⁵⁴

The adult client with brain damage

The adult client with brain damage and the needs of the family will be specifically, yet briefly, examined here. Brain damage can affect the cognitive, perceptual, emotional, social, and neurological systems of the individual and can be incredibly disruptive and catastrophic to the client’s and family’s lives. When a person sustains a brain injury and is hospitalized, emotional support for the family (client included) is the primary need to be met initially. The therapist should attempt to convey warmth and a caring attitude, especially during the family’s initial contacts.²⁷⁵ Typical complaints about the acute period involve impersonal hospital routines and lack of definite information about the patient’s status.^{13,92,175,229,276} Unfortunately, definite information is usually not available at the earliest stages.

Later the family must deal with the physical changes in the client’s body; what may be even more injurious to the family are the psychological, cognitive, and social changes in the client.^† People with cerebrovascular accidents have been found to be more clinically depressed than orthopedic patients are. The libido²⁶³ and the emotional systems are also affected.^{75,176–178,226} It has further been shown that persons who survive a cerebrovascular accident or other impairment and who have a full return of function do not return to normal life because of a lack of social and emotional skills.^‡ Families of cerebrovascular accident victims have also reported that social reintegration is the most difficult phase of rehabilitation.²⁷⁷ Lack of socially appropriate behaviors has been one of the most troublesome complaints of people who deal with the person with a traumatic brain injury.¹⁷⁶ Therapists may be able to help alter this syndrome by encouraging appropriate behavior and by structuring therapy situations to reteach the client appropriate behavioral and social interaction skills. A technique called dialectical behavioral therapy has been used with people with mental health disorders, and it appears to be a promising approach. One study by Miller and colleagues²⁷⁸ found significant reductions in suicidal symptoms; the most highly rated skills included distress tolerance and mindfulness skills. The goals of a dialectical behavioral therapy program designed for individuals with mild traumatic brain injury include decreasing the individual’s self-defeating behaviors and cognitions, cultivating understanding of the individual’s abilities and impairments, and increasing behavioral and cognitive skills that will lead to a greater sense of self and feelings of self-esteem. The program is designed to improve each patient’s ability to accept his or her life as it is and to function independently.²⁷⁹

Better follow-up care needs to be implemented when dealing with the adult with brain damage.^{1,98,107,248,267–269} In some areas there are outpatient, privately funded programs that can help support the brain-injured individual and his or her family on discharge from hospital settings. These resources must be recommended for follow-up care as needed.

It may not be possible for the client and family to constantly come to the clinic for support and follow-up, but telephone conversations can be scheduled on a periodic basis, or the exchange of letters or audiotapes can also be used. With the increased availability of video recorders, the day may come when a follow-up may be performed on videotapes and sent via the Internet by clients living in rural areas. Support groups are being used increasingly to facilitate client and family adjustment and accommodation to disability, as well as reentry into the community.*