chapter 2 Psychological aspects of stroke rehabilitation
After completing this chapter, the reader will be able to accomplish the following:
1. Understand the psychological manifestations of stroke in both children and adults.
2. Understand how a variety of psychological impairments affect the recovery process.
3. Understand how personality traits impact rehabilitation.
4. Understand the effect of stroke on family members and those in the caregiver role.
Understanding the relationship between psychological factors and stroke is a complex undertaking. Anxiety, depression, aggression, and emotional lability are commonly seen in persons who have sustained a stroke, as each takes its toll on adjustment and each affects functional outcome. Psychiatric conditions restrict recovery and restrain quality of life, making assessment and treatment of paramount importance. When considering the psychological consequences of stroke, observing physiological changes, and emotional reactions to this life-altering event, one’s personality constructs and cultural background play a role in recovery and outcome. The purpose of this chapter is to review the relationship between stroke and its psychological consequences in adults; the impact on the family’s and on the caregiver’s well-being; and how to understand the implications for occupational therapy. In addition, pediatric stroke and the psychological consequences that may result are reviewed.
It is well-documented that nearly 800,000 persons each year suffer a stroke, and of those it is the first attack for almost 600,000.60 These statistics are especially significant when considering that there is a decrease in stroke incidence, particularly in high income countries, due to attention to cardiovascular risk factors.32 In the United States, stroke continues to be a leading cause of death, yet more than four million stroke individuals who have had a stroke survive.60 Stroke is a leading cause of disability and has a major impact on participation as it compromises activities of daily living (ADL) and social roles.22 Stroke survivors, even in this climate of health care change, continue to receive and to benefit from services offered by occupational therapists.80
Stroke is a leading cause of disability and death in individuals over 65-years-old, but 25% of those with stroke are younger,14 as stroke can occur at any age. In addition to stroke afflicting adults, it has been estimated that stroke affects children at a rate of at least two to three per 100,000.46 These statistics are further compounded by the significant psychological impact of stroke on the survivors and their families.
It is well established that adults who have sustained a stroke are at high risk for psychological consequences. As many as 30% to 50% of stroke survivors have been estimated to have had some significant psychological disorder following stroke,96 even in the absence of a disabling condition.91 In fact, the risk for developing a psychological disorder persists long after the stroke event.127 Given the profound impact psychological disorders have on recovery, understanding the relationship, the range, and the effect these disorders have on individuals with stroke is paramount, for psychological factors may be antecedents, consequences, and/or reactions to the traumatic neurological experience.
Clearly, a complex relationship exists between psychological factors and medical conditions, and “Psychological Factors Affecting Medical Condition” is even recognized as a diagnostic category.1 Undesirable psychological features may have an adverse effect on recovery and outcome or may place an individual at risk for an unwanted outcome. Specific psychological symptoms, such as anxiety or depression; specific personality traits or coping styles, such as aggressive personality traits29,128; maladaptive health behaviors, such as tobacco or alcohol abuse; and stress-related physiological responses,116 have been linked to stroke.69
Stress of illness and disability affects not only the person but also one’s family. An unexpected serious and disabling illness results in the need for all family members to cope and find new ways of relating to one another. Previously established roles, authority relationships, family-based activities, and occupations may change,71 resulting in a structural shift that puts the entire family at risk for significant distress. Due to the disability, the potential for increased alienation of the individual and of the family adds to the psychological distress already being experienced.48 When a stroke happens to a child, the implications can be devastating for the family92 and can result in increased mental health disorders in a parent.39
Psychological factors as predictors of stroke
The examination of psychological factors as predictors of stroke has received attention. This area of inquiry is difficult to investigate because the psychological variables typically identified are linked to lifestyle behaviors considered risk factors for coronary heart disease, such as tobacco and alcohol use, and decreased physical activity, and to physiological risk factors (e.g., hypertension).69,128 Even so, evidence indicates that personality traits may be associated with increased risk for stroke. Longitudinal population based studies have been conducted linking emotion to stroke onset. One study showed that participants with a pattern of outward expression of anger were twice as likely to sustain a stroke compared with even-tempered individuals; individuals with a pattern of inward expression and those who were able to control their anger were not at any higher risk for stroke.29 Another study also linked anger to stroke, but only in the younger participants, suggesting that the influence of anger on stroke decreases as one ages.128 Individuals with psychological distress are at greater risk for fatal stroke,69 as are those who reported high, frequent levels of stress. No relationship exists between reported stress levels and nonfatal stroke. The speculation is that individuals with better coping skills may be able to handle stressful situations and may have fewer associated lifestyle risk factors, thereby reducing their risk.116
Prestroke psychological factors as predictors of recovery and rehabilitation
A series of studies have been done that examine prestroke personality and psychological variables on poststroke recovery and rehabilitation. In one study, a history of either an affective disorder or an anxiety disorder was demonstrated to put a person at increased risk for developing major depression. The severity of the depression symptoms also depended on a personal or family history of affective or anxiety disorders.74 Personality traits, such as introversion and depression, may increase the mortality risk following a stroke,75 as may a history of depression.100 An impaired social relationship with a significant other before a stroke also puts individuals at significant risk for depression during the acute phase following a stroke and during the long term after the stroke.99
Personality factors are associated with the ability to resume independence. As a character trait, individual’s self-esteem has been linked with recovery and independence,13 and as such is critical to consider in the rehabilitation process.119 Personality factors along with occupational status, educational level, workplace accommodation, and occupational choice play a significant role in the ability to return to work.71 One’s ability to handle life events, classified into coping strategies, also affects one’s ability to resume daily living function. Individuals with a preference for active coping styles or with an extrovert personality trait show greater improvements in activities of daily living function than those individuals with passive or avoidant coping styles. These individuals are speculated to be more highly motivated and have a more realistic appraisal of their potential, which results in improved activities of daily living function.27
Emotional reaction to stroke
For any individual hospitalized after a traumatic event, a barrage of emotion is likely to develop. When faced with an acute illness with chronic consequences, compounded by being acutely aware of the physical changes occurring and by being surrounded by a foreign and controlling environment adds to ones emotional reaction.38 During an acute phase of the illness, one is concerned with survival, is often confused with what is happening, and may be the recipient of poor communication from hospital staff. This results in feelings of being overwhelmed; in experiences of loss of control over personal care, which affects one’s sense of dignity; and often in experiences of the hospital environment being dissatisfying, inadequate, and insensitive.17 During the rehabilitation phase, an individual’s anxiety may increase if one is not progressing as quickly as one hoped. Depression and social isolation may set in, as family members need to resume normalcy and may not visit as often as they initially did.17 Fear and anxiety, a sense of powerlessness, and even psychological regression can result from stressors that include a threat to one’s integrity, dependence on strangers, separation from home and family, fear of loss of approval, fear of loss of control, fear of loss of control of body parts, and guilt. The initial loss of control (not knowing what is happening), integrity (wearing a hospital gown or using a bedpan), and freedom (given a schedule to follow, transported by others, told what to eat and when to eat) are values underscored by society and, when challenged, further add to stigma, shame, and a sense of isolation.92 This experience of hospitalization contributes to a diminished sense of self. When patients face discharge from the hospital and/or rehabilitation program, they may feel abandoned by the medical system. Reality of their abilities with their ADL and instrumental ADL, the role changes that occur, and their participation in their activities may all be very challenging. They experience loss, especially around driving (as is symbolizes independence, self-esteem, social support, participation), previously enjoyed hobbies and activities, loss of role, and loss of future plans. They may also feel unattractive and self-conscious as change in their relationship with their partner occurs.17 See Chapters 23, 25, and 29.
As one’s condition begins to stabilize, emotional reactions continue. Research has shown that depression and other psychological conditions may result from physiological damage caused by stroke and from an emotional consequence of the often resultant physically disabling condition and subsequent social disruption. One’s reaction to illness and disability, to loss of function, to change in body image, and to role change and possible social alienation can give rise to reactions of grief, anger, guilt, and fear,31 all of which contribute to a sense of social stigma46 and produce a myriad of feelings that contribute to depression and anxiety. Indeed, stroke has been suggested to be “an overwhelming psychological event that triggers a depressive episode in predisposed individuals.”125
If an individual seeks treatment early enough in the development of a nonhemorrhagic stroke, medication is available that may halt the progression of the stroke and even reverse the damage to the brain. However, the medication available is not without potentially fatal consequences. Whether the individual or the individual’s family makes the decision for treatment with the medication, if the outcome is poor, the family may be left with feelings of anger and guilt in addition to feelings of grief. If the individual delayed seeking treatment and did not avail himself or herself of potential medication, family members may attribute blame to the patient for the condition with which they now must cope.110
Certainly physical recovery plays a major role in one’s emotional reaction and in psychological adaptation. The actual experience of stroke, as it is happening, brings forth fear of the unknown and distress that this experience actually is occurring. Although the initial recovery phase may be marked by some improvement in one’s physical status, a plateau period during which progress is slowed often follows and may lead to frustration and sadness. One’s emotional recovery is marked by a mix of emotions, including uncertainty, hope, loss of control, anger, and frustration. Social recovery similarly is challenged, as one needs to adjust to changing roles, isolation, and the perceived dissonance between past and current/future life.10
Lack of control over one’s body, fear and shock of the rapidity of the physical changes, and feelings of loss around three particular areas—activities, abilities, and independence—contribute to the emotional challenge of accepting that one’s life is changed in significant ways.42 One may argue that for individuals to make the transition toward recovery, they must assess the psychological meaning of loss as it relates to self-concept. How might the loss of ability as it affects activity engagement affect one’s personal meaning of quality of life?11 To eventually accept a changed self, one’s self-concept goes through a process of transformation.
Framed in terms of stages, issues of recovery reflect the interplay among physical recovery, emotional recovery, and psychological adaptation. Although progress takes different forms for each individual, survivors tend to deal with common themes, and each has its impact on adaptation. It has been suggested that the transition from a healthy being to a stroke survivor occurs in stages. Keeping in mind that stroke survivors are often discharged home relatively quickly, there is great impact on family members and consequently everyone’s role transition.119 To have a successful transition, there are stages in which the survivor and the family go through. One model suggests stages that include denial, which protect one from initial overwhelming emotion; grieving (as distinguished from depression), in which one mourns the loss of function; role transition, to include “care-receiver”; the development of optimal independence, which includes compensatory techniques and adjustment to a new body; rebuilding a social support system; and reintegration into the community via instrumental ADL.11 It has also been suggested that there are three domains in recovery: physical, psychological, and social. Important to these domains is self-worth, which is related to participation and to quality of life. While stroke has great impact on cognition and physical function, it is also critical to address self-image and sense of being (psychological domain), and changes in relationships (social domain). As family members also change roles due to stroke, it is important to promote a positive self-concept and positive social support; both will have an impact on function.119 The goal with each of these models is toward acceptance of any remaining disability and the return to a satisfying quality of life. See Chapter 3. Emotional reaction following stroke has significant implications for recovery. Feelings of helplessness or hopelessness affect survival rate,63 apathy affects functional ability,47 and depression and anxiety affect function and recovery.2,14-16,45,50
One’s cultural background also may play a role in how one copes with illness, disability, and rehabilitation. As stated earlier, cultural values and attitudes may devalue any form of dependency. Consequently, a disability may add to feelings of alienation. From a cultural perspective, psychological conditions also may be viewed as a weakness of character. This further stigmatizes the individual and leads to the avoidance of acknowledging feelings and of being treated.70
Health professionals, without intending to do so, may become enablers of the loss of personal identity and dignity and contribute to a diminished self-esteem. When an individual is referred to in terms of a disabling condition (e.g., “a right hemi”), one’s dignity and sense of personal worth are challenged. This adds to what may be emerging as a damaged sense of self within the context of social stigma. Many individuals go to great lengths to conceal their disabilities from others to avoid being identified as having had a stroke.90 Although much has been written regarding the negative emotional reaction to stroke, the suggestion also has been made that for individuals whose lives ordinarily are characterized by crises, dealing with the consequences of stroke is not considered an extraordinary event but just another life change.89 Although this challenges the general assumption that anyone who has experienced a stroke also will experience grief, loss, and distress,96 considering the context of one’s life in which stroke occurs is important.66
Personality change following stroke
While it has been noted that a change in personality may follow a stroke, and this may be related to lesion location,8 the change is characterized as any of the following types: aggressive, disinhibition, paranoid, labile, and apathetic.33 Although some of the symptoms may appear to be consistent with the signs and symptoms of specific psychiatric conditions, they often emerge as negative emotions or behaviors that do not meet the criteria for particular diagnoses. These can range from euphoria to uncontrollable tears, from worry to agitation, from disinterest to hostility, or from paranoia and guarded behavior to excessive dependency. Despite the behavioral expression of these emotions, they tend not to reflect an underlying mood and may add to the embarrassment experienced by the patient.8 These behavioral changes are particularly difficult for the caregiver to manage, and they do not respond to medication.33
Apathy is a common change that occurs, with some studies suggesting between 20% to 40% of stroke survivors display some apathetic behavior.33 Although apathy can be a symptom of depression, it can also be a separate construct, occurs more frequently than depression, and affects rehabilitation and recovery.43 By its very nature, the impact of apathy on energy and motivation clearly effects engagement in the recovery and rehabilitative process.
Depression
Among the most significant considerations in understanding the characteristics and consequences of stroke is the relationship of depression to onset, recovery, and rehabilitation of persons with stroke. Because of the neurophysiological changes and because of the reaction to the consequences of stroke, depression has major implications for the course of recovery. Despite the causes of depression, assessment and treatment of depression affects psychological, functional, and medical health.
The relationship between cerebrovascular disease and depression has long been studied. Depression is both a risk factor for stroke33,55 and a major consequence of stroke.126 For nearly three quarters of a century, the assumption held that depression following a stroke was related only to the functional and social consequences of the disability and not to the neurological damage of the stroke itself. Three decades ago, however, a study compared depression in individuals with stroke to individuals with orthopedic conditions, with both groups matched for functional ability. The significant increase of depression in the group with stroke led the researchers to believe that depression was related to something more than a reaction to functional inability.35 More recent studies show that depression in stroke can occur at any time; during the acute phase, or two to three years later; and may not reflect functional independence.127 It is also often accompanied by anxiety.4 With the acknowledgment that depression is a major complication for individuals with stroke, attention is paid to both the prevention and treatment of poststroke depression.41,126
During the past three decades, links have been made between lesion location and depression onset. Past studies have noted that an association exists between lesion location, particularly left anterior lesions, with onset of depression during the acute phase; and an increased severity of depression the closer the lesion is to the left frontal pole,62,96 and right parietal lesions with depression during the subacute period.99 Studies suggest that there is not only a neuroanatomical basis of depression following stroke;79 but also a pathophysiological basis for depression, which may result from a chemical change following brain infarction.99,101 This avenue of inquiry continues, with attention recently being paid to lesions associated with vascular depression.100 Lesion location is not without controversy, however. Studies have demonstrated that depression occurs in individuals without regard to location of lesion;79 often occurs within the acute phase (first three months);4 and despite its etiology (biological or psychosocial),115 is a significant consequence of stroke and requires treatment.116 It is important to view poststroke depression as multifactorial when planning treatment.115
Whether poststroke depression is characterized by depressive features or meets criteria for major depression,33 there are implications for recovery and rehabilitation. Associated with poorer outcomes, as reflected by overall functional impairment, diminished quality of life, and mortality,76 depression is specifically linked with increased impairment in ADL and is linked with more severe neurological deficits.50 Any form of depression has an effect on functional status in individuals with stroke and that depressive symptoms; even in the absence of any depression diagnosis, it affects functional status.45 The duration of depression varies from months to years.6,14,62 Depression accompanied by cognitive impairment has a longer duration.42 Any poststroke depression that does not remit leads to a poorer, long-term functional outcome.15,16,88 In addition, changes in social support add to depression.17
Poststroke depression is characterized by unrelenting feelings of sadness, anhedonia, helplessness, worthlessness, and/or hopelessness; loss of pleasure or interest in all activities; change in appetite, weight, or sleep pattern; psychomotor retardation or agitation; loss of energy; loss of concentration; or suicidal ideation.14,33 Indeed, suicidal ideation, although prevalent in individuals with a variety of acute medical conditions,53 is also prevalent in medical conditions that become chronic. For individuals with stroke, the prevalence of suicidal ideation increases over time.52
Depression also may be characterized by isolative behavior and irritable, angry, or hostile expression. These symptoms can occur to a lesser extent and have a less debilitating effect. When the symptoms are less frequent and less severe, one may have a dysthymia disorder or minor depression.1 A history of depression has been noted to be a risk factor for stroke,30 a risk that may exceed the general risk by two to three times.55 It also is a risk factor for not surviving a stroke.30 Even an attitude of helplessness affects one’s survival rate.58
Other psychological diagnoses sometimes are confused with depression, can occur concomitantly, and have a prevalence rate of between 19% and 22%. These diagnoses include apathy (low motivation and/or energy) and various anxiety disorders.99
Any form of depression can occur at any time following stroke, and the symptoms used to diagnose depression may depend on whether the depression onset is early or late.87,114 Regardless of onset or symptom clusters, poststroke depression, whether related to the clinical diagnosis of depression or with the number of clinically significant symptoms associated with depression,33,41,55,127 has been found to negatively affect the physical recovery from stroke16 and independence in ADL.15,16
Anxiety disorders
It is well-documented that a significant comorbidity exists between poststroke depression and anxiety.14 Anxiety disorders, most commonly generalized anxiety disorder, can emerge during any phase of recovery, from the acute phase to the rehabilitation phase. Like depression, the cause may vary. Although compelling evidence suggests anxiety is often a reaction to loss of anticipated or actual functional ability,14 other evidence links early onset with a previous history of psychiatric conditions.33 It also may accompany poststroke depression.33
Some instances of anxiety may have an anatomical basis and may be associated with left hemisphere lesions.4 Emotional lability, characterized by extreme expression of emotion such as crying or laughing, but without the underlying feelings of sadness or depression, occurs independent of depression and may be associated with lesions in the anterior regions of the cerebral hemispheres.99 Excessive worrying, restlessness, irritability and/or tension, and catastrophic reactions (sudden onset of anxiety, hostility, or crying) may be linked with lesion location, specifically the left posterior internal capsule, left cortex, and left anterior subcortex, respectively.99 Regardless of its cause, anxiety tends to remain stable over time, while depression may decrease.76 Anxiety, if coupled with depression, impairs functional ability; and by itself, affects quality of life and social functioning.2,33
Recent attention has been paid to recognizing post traumatic stress disorder (PTSD) in stroke survivors. When conceptualizing stroke as an emotionally traumatic event, it is easy to see why it may give rise to symptoms consistent with PTSD. It has been estimated that PTSD occurs in as many as 30% of stroke survivors, the greatest risks related to number of previous strokes one has had, a premorbid negative affect,72 and cognitive appraisals that also tend to be negative.34,72 The onset of PTSD tends to occur shortly after the stroke event, as the risk diminishes with time. Anxiety and depression is not predictive of PTSD, although there is an association between number and severity of PTSD symptoms.72
Catastrophic reactions in which individuals experience sudden and extreme feelings of anxiety are related to anxiety disorders. Although these reactions typically occur after the acute poststroke phase, the responses may be in reaction to frustration and depression and have implications for rehabilitation.14 Catastrophic reactions are distinguished from emotional lability in that an underlying emotion is associated with it. The affect expressed with emotional lability, that is, sudden outbursts of laughter or crying, is not associated with one’s mood.75
Other psychological/emotional conditions
Psychotic conditions are rare consequences of stroke, but they can occur. Symptoms can include delusions and hallucinations,94 paranoia, and mania.59 Poststroke mania, for example, may occur in up to 2% of stroke survivors and might be related to a previous history.33 There is some evidence that associates these symptoms with preexisting neuroanatomical risk factors, older age,94 and lesion location.99 Most psychotic conditions that emerge after stroke are believed to emerge in individuals with a history of psychotic conditions or in individuals predisposed to developing these conditions.8
Poststroke dementia, also known as multiinfarct dementia or vascular dementia, has been diagnosed in many individuals, although the consistency of diagnostic criteria has not been applied.95 Depending upon the criteria used, anywhere from 6% to 32% of stroke survivors may have signs of dementia.104 This is especially important, as the risk for dementia even 10 years poststroke is higher than in the nonstroke population.104 Poststroke dementia occurs more frequently in those over 60-years-old.104 It has been argued that memory loss need not be a criteria for dementia, particularly when one’s executive functioning is impaired and one’s mental speed is diminished. It has also been argued that dementia may have a slow onset, starting with cognitive disorders of the nondementia type.95
Cognitive deficits, even those not associated with dementia, are common consequences of stroke.119 Although cognitive deficits may be related directly to lesion, the effect between depression and cognition is interactive, and distinguishing one from the other is sometimes difficult. Some evidence suggests that depression leads to cognitive impairment81 that might be classified as a pseudodementia9 and that these conditions can benefit from adequate treatment of depression.31
Cognitive ability is linked with one’s ability to live independently, as it is directly related to one’s ability to learn skills, have insight into one’s condition, and to participate in the overall rehabilitation process.119 Not surprisingly, cognitive ability is a significant predictor of functional outcome and the ability to live independently.64,119 See Chapters 17, 18, and 19.
Being able to control one’s emotions is an important characteristic, and emotional responses to situations or events are expected. Yet, for many stroke survivors, pathological laughter or crying occurs. It has been estimated that between 11% to 40% have this involuntary expression of emotion, an expression unrelated to a situation or event.33
Discreet expression of emotion is exhibited by many stroke survivors. While some have been associated with personality change, it has also been argued that emotions may be early indicators of psychological disorders. These emotions include sadness, passivity, aggressiveness, indifference, disinhibition, denial, and adaptation. While a previous psychiatric history is linked with these emotions, family history is not linked, nor is degree of impairment. Linking emotional behaviors to lesion location is inconclusive.3
It has been noted that people with stroke have a lowered self-esteem. Self-esteem, which reflects one’s sense of worth, may assist or inhibit one’s emotional adjustment to illness and disability.121 While it may coexist with depression, it should also be viewed as a separate entity. Addressing issues of self-esteem has implications for recovery and function. Table 2-1 identifies the prevalence of some of these disorders.
Biological intervention
A number of factors are associated with the cause of psychological conditions following stroke. Social and psychological stressors play a major role in the development of these conditions, as do anatomical lesions. Despite the debate regarding the primary cause of psychological conditions, leading some to conclude that no evidence supports a single theory on the origin of psychological conditions in persons with stroke;125 no debate exists regarding the importance of taking a bio-psycho-social approach in understanding and treating stroke, as psychological conditions take their toll on recovery and functional ability.
Medication is not sufficient to counter the effect of stroke on daily function,16 but it is a critical weapon in the treatment of psychological conditions. Without regard to the cause of the conditions, a number of studies have been conducted to determine the use of psychopharmacological agents in treating psychological conditions. Antidepressants have been used in individuals with depression or with pathological affect; benzodiazepines have been used for generalized anxiety disorder, with limited success because of side effects; and poststroke psychosis appears to respond to neuroleptic medication.14,33
A Cochrane review has examined the effect of medication on preventing and treating poststroke depression.41 While many of the studies reviewed through metaanalysis have limitations that preclude definite recommendations, it appears that medication will not prevent poststroke depression,41 but may be useful treating poststroke depression.41 The opposite may be true for psychosocial interventions; it may be useful in preventing depression,41 but not in treating depression.41 Using medication, however, should be done with caution, as side effects can have significant consequences.41
Coping with illness, recovery, and rehabilitation
The relationship between psychosocial factors and sustaining a stroke is compounded by the role emotion, personality, and culture have in how one copes with traumatic illness. Defense mechanisms, which serve to protect the individual from the overwhelming emotions that may arise, may add to one’s difficulty in coping with illness and disability.78 Defense mechanisms typically used include denial, which negates the reality of what is happening and has happened; avoidance, in which the individual is aware of what is happening and has happened but avoids the implications; regression, in which one exhibits increased emotion and/or increased dependent behavior not characteristic of one’s developmental level; compensation, in which one becomes adept in an area to counter an inability of another area; rationalization, which provides reasons or excuses for not being able to accomplish tasks or goals; and diversion of feelings, in which unacceptable feelings are altered into socially appropriate behaviors.31 How defenses are used also can give rise to how one is viewed by the treating therapist. The therapist may misinterpret behavior guided by maladaptive defense mechanisms and label the individual as a difficult patient.78
As the chronicity of the disability becomes apparent, the individual and one’s social network must deal with the long-term effects of the stroke. Most immediate is the perceived change in oneself. Because role, lifestyle, and where one is in one’s life cycle affect one’s emotional reaction, trauma brings forth changes in what one can do and in how one sees oneself. Although time may enable one to develop the adaptive defenses necessary to deal with the anxiety surrounding illness, disability, and the unknown, one’s psychological adaptation may be undermined if the symptoms are not alleviated. The resultant reaction to stress is often a universal loss of self-esteem followed by depression. Maladaptive uses of defenses may then ensue.111
Psychological adjustment to illness and disability also depends on personality constructs; consequently, individuals who have had strokes need to be understood from the perspective of their character traits, their cultural background, and the psychological consequences that are reactionary and physiologically based. Some evidence exists that personality characteristics play a role in the development of stroke, in the recovery from stroke, and in how one participates in treatment.
Almost a half a century ago, it was suggested that personality constructs characterize how one copes with illness and engages in treatment, and that health care professionals should understand and adapt their interactive styles based on the patient’s character.49 One approach to understanding personality is by using the classification system typical of those with personality disorders, such as the dependent and overdemanding personality, the controlling personality, or the dramatic personality. How individuals use those characteristics to cope with the stress and anxiety associated with illness can assist the therapist implement treatment.78 For example, patients with compulsive personalities who ask for details and facts will benefit when the therapist provides adequate information to calm any anxiety, and when the therapist encourages the patient to take charge of certain aspects of treatment.38 A second approach to understanding personality is based on coping styles used in stressful situations. This approach allows one to shape the rehabilitation process so that it reflects the patients’ coping style.19,96 A third approach is to identify whether an individual has certain emotional characteristics, characteristics which are thought to reflect positive rehabilitation outcomes: ability for reality testing, ability to self-reflect, and ability to acknowledge and grieve for loss.9 Individuals who have sustained a significant physical illness or injury are struggling with emotional crises and revert to using characteristics from past situations.38 Understanding personality and its role in coping is critical for rehabilitation, for different styles promote functional adjustment and improved quality of life.27
Culture is a major determinant of one’s beliefs and attitudes, plays a major role in how one perceives illness and disability, and may influence how one interacts with health care providers. The meaning one ascribes to illness and how one behaves toward illness may be a function of personal and cultural health traditions. Assuming the sick role, which demands that one adjust to the role of patient and then relinquish that role to resume independence, may be determined culturally. For some, one’s cultural background may promote motivation toward rehabilitation and recovery; for others, it might obstruct progress. Culture dictates how one interacts in any social organization (a clinic or hospital is a social organization); how and when one communicates; how one deals with personal space, particularly as others intrude on it; and how one considers future goals.108 Cultural habits may influence how one expresses oneself and, if one is reserved, may be misperceived as one being unmotivated, guarded, or disrespectful.70 Like personality traits, one’s cultural habits may be expressed as a means to deal with stressful situations.
It may seem logical for an individual who has suffered a stroke to be open with health care providers with one’s feelings, goals, and concerns. In patient-centered practice, health care professionals expect to rely on patients to inform and instruct them as they evaluate and plan treatment for optimal occupational performance. However, some cultures prefer the health care provider to assume somewhat of an authoritarian role,57 others may express respect through the avoidance of eye contact yet expect the health care provider to be solicitous in recognition of social worthiness,37 and others may appear mistrustful and uncommunicative.70
Having a disability that challenges one’s independence is particularly difficult for those individuals for whom independence, control, and individuality are important values.70 Indeed, these attributes eventually may motivate one in the rehabilitative process but initially make it more difficult to deal with a trauma that robs one of these values. In addition, culture often prescribes the roles one assumes in a social or family structure. For these individuals, coping with role change becomes even more challenging.
The psychological conditions so prevalent following stroke are particularly difficult for individuals to deal with if their cultural heritage is intolerant of psychological conditions. Although some cultural groups rely on verbal expression and take pride in expressing their feelings, others are embarrassed to discuss personal issues with outsiders,70 feel guilty if they share feelings with strangers, view any mental condition as one that would bring shame on a family, and expect only willpower and character to overcome psychological problems.57 Psychological issues for some are viewed from a spiritual context, with the expectation of spiritual interventions.37 For others, psychological issues are expressed in physical terms; headaches or backaches, for example, may be how one communicates depression.56 For many individuals, the ability to accept treatment for a mental health condition happens only when all other interventions have failed.57
Cultural attitudes add to the emotional reaction one might have to the physical consequences of stroke and make one more resistant to understanding the psychological implications. One also must remember that not everyone from a particular cultural heritage shares the stereotypical cultural beliefs. The imperative, therefore, is that all health care providers understand what the meaning of illness and recovery is for individuals, from their particular personal and cultural perspectives.
Recovery
One of the most important contributors to any recovery process is motivation. Although psychological conditions, particularly depression and apathy, are often characterized by low motivation, personal traits influence one’s determination toward recovery.
Four factors affect motivation: locus of control, self-efficacy, self-esteem, and social support.25 Locus of control deals with where one places the influence of one’s future. If, for example, individuals believe they can influence their health by eating right, exercising, and so on, then those individuals are viewed as having an internal locus of control. Individuals with an internal locus of control are thought to be more self-motivated. Self-efficacy relates to one’s confidence in what one can do. A strong sense of self-efficacy motivates an individual toward accomplishing a goal. Too strong a sense of self-efficacy, however, may be reflected in misjudging one’s capabilities, leading to frustration and anger.
Promoting individual control over lifestyle and by focusing on what one can do and work toward indeed may mediate the negative effects of disability and may promote psychological adaptation.96,112 This is consistent with the social cognition model of setting personal goals within the context of appropriate outcome expectations, a model used successfully in rehabilitation.97 Developing or maintaining a positive emotional outlook may mediate depression and lead to better functional outcomes.84 Also important in the transition to recovery is an emphasis on health promotion. Because stroke survivors sometimes return to an unhealthy lifestyle,97 fostering the psychological skills that can promote self-efficacy becomes even more important.
As previously noted, individuals with depression have difficulty with self-efficacy, and individuals with poststroke depression have more negative cognitions than do individuals without depression who have had a stroke. Although individuals with stroke tend to focus on what they can no longer do, they may not recognize those qualities and abilities they do have.96 Given the effectiveness of cognitive behavioral approaches in treating depression, cognitive behavioral approaches have been suggested to be efficacious with poststroke depression.81
Self-esteem deals with one’s perception of one’s own worth. An adequate sense of self leads to pride of accomplishment and active participation in the recovery process. Coping strategies focused on personal worth and control help diminish the stress related to illness. These strategies include taking positive action to regain control of one’s life.10 Use of adaptive coping strategies that have worked in the past30,78,96 also promotes adaptation.
Social support has a major influence on motivation. By not feeling isolated or abandoned, one is more likely to consider the future and work toward goals. The importance of social support to the recovery process cannot be understated. Individuals are able to cope better with their changed self and show adequate self-esteem when their social environment is perceived as adequate. Social support is considered essential in the initial recovery stage following stroke.102 Psychological adaptation and improvement in function, even if affected by depression, is fostered when family is involved in rehabilitation efforts.42
One of the measures of quality of life is social participation.22,63 If health is influenced by satisfaction with what one does, then engaging in and feeling competent in activity participation, both social and ADL, is often a positive sign.24 Yet despite the return of or compensation for physical or cognitive functioning, most patients who have sustained a stroke report a decreased involvement in social activities.42,82 Although there is some evidence that engaging in activities lessens as one ages and evaluating reduced participation in an older individual who has survived stroke from the context of normal aging is useful,22 participation should always be a goal. Not being content with how one uses one’s time may reflect difficulty reengaging in meaningful occupations and may contribute to either boredom or depression.24 Diminished participation may also result from changed body image, the stigma of evident disability, and dependence on others for transportation as isolation and frustration results.42 Although physical changes may set in motion the factors that can decrease social involvement, the resultant inability to resume previously held roles, inability to work, and diminished social interaction may have the greatest impact on quality of life.10,82 Attention to social involvement after rehabilitation becomes especially important in the maintenance of function and in leading a meaningful and fulfilling life . Participation may reflect one’s ability to do for oneself.5 See Chapter 3.
Equally important, families are expected to cope with the immediate health needs and subsequent rehabilitation needs of the family member who has had the stroke, and sometimes they feel unsupported. This is especially true if there is poor communication between health care professionals and family members, or when family member’s knowledge about the stroke survivor is ignored or devalued.86 Entire families undergo role and status change, and for family members to experience depression and anxiety is not unusual.122 Depression in the primary support person is higher than in the general population.36 Families as a whole also perceive a decreased quality of life because their social and leisure activities are affected when a family member has had a stroke.82 In addition, they are now meeting health care needs and not affection needs, which further affects their well-being. The shift in one’s relationship can promote tension; a spouse no longer shares occupations, but instead assists with ADL.24 When the needs of the family are addressed, an individual is better able to handle community reintegration. Family members need honest information, must have accessible health professionals, and must receive support for themselves.118 Although social support for family members influences how satisfied they are with quality of life, the ability to problem-solve shapes depressive behavior.41
Children of stroke survivors can be especially vulnerable. Often, children participate in caregiving activities. For some children, this has positive consequences, as they may feel needed and responsible in a mature way;117 however, between 30% and 50% of children of survivors exhibit behavior problems.124 Specifically influencing how well a child of a stroke survivor does is the health status of the healthy parent, rather than the severity of the stroke and the health of the stroke survivor.123,124 Caregiver strain and/or depression is linked with emotional health in the child.123 Children, regardless of the severity of the parent’s stroke, benefit from support from health care professionals.123 Exhibited behavioral problems and depression can improve over time.117,124
Caregiver’s emotional well-being
It is becoming more and more apparent that the emotional health of caregivers, who are usually family members, is being compromised. Often referred to as caregiver burden or strain, the health status of caregiver impacts patient outcome, both functionally and emotionally. Although most caregivers are women and family members,40 men assume this role as well. The caregiver is at great risk for stress, depression, and anxiety.122 This may result from feelings of confinement and being overwhelmed with responsibilities,47 having decreased energy, lack of sleep, dealing with ADL,28 the sudden change in how one’s family functions, changes in personal plans, the overall experience of loss,47,122 and even unrealistic expectation caregivers have in what to expect.24 The caregiver/spouse, particularly if female, is at higher risk for depression due to diminished social interaction with friends and family.54 Caregiver strain does not seem to change over time.47
Taking on the role of caregiver, whether forced or by choice, has emotional consequences for the caregiver, and functional consequences for the stroke survivor. Emotional health of the carer will impact the patient’s functional outcome,40,122 just as the patient’s functional status may impact the carer’s emotional well-being.28,47,88 The carer’s emotional health also impacts other family members, and emotional or behavioral consequences may be exhibited by children.123
Many studies have been done to ascertain the relationship of caregiver strain with factors such as hours spent in the caregiver role and physical and cognitive functional status of the patient. Studies on the relationship of burden to personal strain/stress and role strain have mixed results. Some studies support the notion that decline in the caregiver’s health correlates with hours of caregiving,28 the survivor’s decreased ADL function, negative health status,28,47,77 decreased cognitive ability, and compromised communication skills.93 There is also evidence that caregivers of relatively functional stroke survivors, i.e., good physical and cognitive function, also have a high incidence of depression.113 If there is a preexisting depression, it worsens as caregiver responsibilities increase.28 This supports the notion that all caregivers, regardless of the health and functional status of the survivor, are at risk for emotional distress.
When the caregiver is a family member, one maintains three roles: caregiver, that client in the health care system, and family member.122 These roles add to the psychological burden the carer experiences.40 The role shifts required are shifts that affect the entire family, and as family function affects the stroke survivor’s outcomes, intervention must include a focus on the family needs.122
The American Occupational Therapy Association has underscored the importance of addressing caregiver needs.85 Much of the research on caregiver intervention is compatible with occupational therapists’ domain of practice and should be considered when treating the stroke survivor. This research is not specific to Western countries, as caregiver strain is not bound by culture.77,93,113 Two areas for intervention have been delineated: social support and participation, and coping strategies.
Social support is critical for caregivers.28,118 Whether providing resources to assist the caregiver in carrying out responsibilities, resources to provide respite, or resources to simply give emotional support,28,40,47 maintaining one’s quality of life helps reduce or even prevent depression in the carer.36 Social support plays an important role in reducing caregiver strain,40,41 and assessing one’s social network is the first step toward intervention.
Social participation is equally important. Women may be particularly vulnerable to the effects of decreased social participation, as assuming the role of caregiver may represent a dramatic shift from one’s social routine.54 Reports of participation of carers of patients from many diagnoses have noted that social participation and involvement with meaningful occupations contribute to the caregiver’s well-being.28,44 Community reintegration and social participation of survivors also helps caregivers.47
Various models of interventions for caregivers have been proposed and are all aimed at reducing and decreasing burden. Each pays attention to social support and participation. While studies support almost any intervention as positive in improving the psychological health of the carer and reducing the negativity associated with caring, the studies themselves are not methodologically rigorous. This has implications for the findings, but intervention should be provided, as there are positive effects.26
Coping strategies also contribute to the emotional health of the carer and begin when the stroke occurs. Just as the stroke survivor’s personality and culture contribute to one’s reaction to illness, they also have implications for how the individual handles stress and anxiety. Maladaptive coping styles, such as denial and self-blame, used by the caregiver lead to depression, but so might positive coping strategies, particularly early in the recovery process.93 For example, positive coping styles can include planning, active coping, acceptance, and positive reframing. If planning is based on unrealistic expectations during the acute phase when progress is unpredictable, depression can develop.93 Nonetheless, coping strategies have been effective in helping the caregiver adjust.
Emotion-focused strategies may be effective when dealing with problems. Positive coping styles122,40 versus pessimism and negative styles may reduce stress, and addressing social problems may be more effective than social support.40 Helping the carer set realistic goals when solving problems is also effective.40,83,122
Children with stroke
Too often pediatric stroke is overlooked, and as a result, has not been extensively studied.51 Two to three children in 100,000 are diagnosed each year,46 although that estimate may be low,65 as studies have suggested a rate as high as of 13 in 100,000 children, and one in 5000 live births.2 Typically associated with clinical conditions, such as congenital heart disease, sickle cell anemia, and infection,2,61,98 nearly three quarters of pediatric cases have no known preexisting condition.61 Compounding the ability to diagnose children are “silent brain lesions” that may occur in as many as 20% of children with sickle cell anemia,98 which affect cognition and behavior, and conditions that “mimic” stroke, such as hemiplegic cerebral palsy, and complicated migraine or seizure.2
Pediatric stroke is distinguished from adult stroke in other ways as well. Lifestyle, such as smoking, and risk factors, such as high blood pressure, are not associated with childhood stroke;2 some studies report functional recovery to be better in children than adults due to the plasticity of the brain,46 while other studies suggest almost all children who survive stroke have residual impairments42 as the immature brain is more vulnerable to damage;51 and survivors of childhood arterial ischemic stroke have poor outcomes.7 Finally, lesion location does not seem to influence cognitive or psychological outcome.2 While the most prevalent psychiatric disorder in adults is poststroke depression, which occurs in over 30% of the cases,14 attentional deficit hyperactivity disorder is the most prevalent in children, occurring in 46% of the cases.68 Children have impairments that affect a variety of functional domains and that limit activity involvement,39 and when stroke is compounded by any number of psychiatric conditions, their functional ability is significantly impaired.67
The psychological implications of pediatric stroke may best be understood when considering that estimates of between 50% to 80% of all surviving children have attention, behavior, and quality of life deficits.36,21 Being able to return to and complete school50,51 is a goal for many survivors and appears to be an indicator of function. Nonetheless, psychological manifestations are apparent in many children and affect functional outcome.
It has been suggested that the child’s emotional health is related to the parent’s well-being, and that social emotional function and activity limitation are linked to a parent’s increased emotional distress.39 In addition, a family history of psychological conditions is an important risk factor for a child’s psychiatric disorder.67 A high rate of attentional deficit hyperactivity disorders (46%), anxiety disorders (31%), and mood disorders including depression (21%) occur in children.67 Parents also report a personality change67,86 and an increase of emotional difficulty and behavioral change.21,86 Children who have a psychological disorder following stroke are more impaired functionally than those with stroke who do not have a psychological disorder.67 These children are more impaired in IQ testing, academic functioning, and social functioning.67
Despite the barriers, children with stroke tend to have a good quality of life,21 and many if not most return to school.46 However, social functioning remains a concern, because of the residual intellectual and language challenges.46 These children especially benefit when treatment is oriented toward “sameness,” i.e., to ensure that the child perceives oneself not a different from one’s peers, but similar in both function and in appearance.7 Acceptance by one’s social peer group is an important rehabilitation goal.
Occupational therapy practice
Throughout this chapter, reference has been made to the effect of psychological conditions and psychiatric disorders on recovery and rehabilitation. Personality traits80 and levels of stress,69,94 have been linked with mortality rates from stroke, as have severe forms of depression.30 Personality traits related to self-esteem and coping style have been linked with ability to resume independence.13,27 Participation in meaningful activities may be the best indicator of recovery.5,19,22,28,46
Depression and anxiety have perhaps the greatest impact on recovery and rehabilitation. Depression has been linked in general with recovery from stroke, with deficits in physical function,50 and with deficits in impairment in daily living.15,16,88 Even depressive symptoms without a clear diagnosis are linked to poorer functional status.45 The presence of anxiety also reduces functional ability and diminishes social networks.3
Assessment and treatment of psychological conditions and psychiatric disorders is critical when working with individuals who have had a stroke and with their families. As reviewed elsewhere, studies have repeatedly demonstrated that medication is effective in the prevention84 and treatment of these conditions16 but should be coupled with psychological and social interventions.
In 2008, the American Occupational Therapy Association published its Occupational Therapy Practice Framework, 2nd edition.103 Critical to the framework, which delineates the focus of practice and links evaluation and intervention with occupation, is the interdependency of performance in areas of occupation, skills, and patterns with context/environment, activity demands, and client factors. Key to the practice of occupational therapy is the understanding of how illness or disability affects occupation and how engagement in occupation depends on the interaction of physical, psychological, emotional, and social conditions.
When using the framework as a guide, one is compelled to evaluate all the patterns and skills necessary to engage in activity and occupation.103 Ability to engage in everyday activities leads to participation in patient-selected contexts and results in satisfactory quality of life. Because quality of life is measured through physical, psychological, and social indicators,63,120 the areas identified within this chapter require attention: personality traits; cultural attitudes and beliefs; psychological and cognitive consequences of stroke; emotional reactions to illness, disability, and recovery; and social context and support. This information has a direct bearing on the occupational profile developed, and it affects physical, psychological, and social functioning and the potential for independence.
The patient-centered focus of practice103 is consistent with what should be the focus of evaluation and intervention. Patients measure success not by the therapist’s standards but by their personal goals.42 Indeed, the benchmarks that professionals use to determine functional ability is typically related to physical performance, whereas patients use quality of life measures.10
The therapeutic relationship
There is some evidence that psychosocial intervention may indeed prevent poststroke depression.41 Given this, it is paramount to consider every interaction between the patient and therapist as a context for assessment and intervention.96 The relationship that develops presents an ongoing opportunity to consider personal and social needs, to clarify and refine goals, and to address the ambient emotional conditions affecting progress. The relationship between therapist and patient may even predict positive functional outcome.9 The therapeutic relationship begins the moment the patient and therapist interact. This may precede face-to-face contact, as each may have preconceived notions of what to expect. These notions may impede the therapeutic process if they lead to inaccurate or unrealistic assumptions, or they may facilitate the process if they promote the awareness of conditions and contexts that must be considered.
Fundamental to the relationship is respect, trust, concern for dignity, honesty, and the ability to be empathetic.106 As the therapist and patient work to develop a collaboration that can result in optimal occupational performance, each needs to engage in the therapeutic process to provide meaning and value for the patient. Above all, this engagement is based on respecting the patient’s individuality, making it possible for the patient to identify valued goals, and maintaining sensitivity for the fears, concerns, frustrations, and disappointments that emerge. A significant communicative tool in this relationship is empathy: the ability to convey an understanding of another’s condition. Not to be confused with sympathy, pity, or identification, each of which can interfere with the therapeutic relationship,20 empathy advances the helpful nature of the relationship. Conveying empathy, along with informing patients of the processes and rationale behind treatment, anticipating possible difficulties or obstacles, and soliciting social support from family or friends, improves cooperation and compliance in treatment.107
Evaluation
Evaluating the psychological conditions in an individual with stroke should be part of every therapist’s assessment procedures. In addition to using specific measurement tools that target psychological and cognitive functions, the therapist should seek to answer a series of questions via interview of the patient and family and through observation. This process may be a challenge, particularly if speech, language, or visual spatial impairments are evident.
Psychological conditions may present at any time and with varying degrees of intensity. A change when participating in treatment (e.g., sudden disinterest in activities or goals, decreased energy, difficulty concentrating, increased worrying or agitation, or change in interpersonal interactions) may be indicators of the onset of depression or anxiety.
The mental status examination provides the initial and the ongoing evaluation of mental states. In addition to the examination providing a beginning assessment of a patient’s cognitive state (orientation, memory, and attention), it provides the therapist with an assessment of mood and affect, speech and perceptual disturbances, thought processes, concentration ability, abstract thinking, judgment and insight, and reliability.105 Although one’s mental state can change from day to day, it is an important indicator of psychological functioning and provides the therapist with an understanding of the patient factors and performance skills that must be considered when planning treatment.
Character style plays a role in how one approaches illness and recovery, and as a result, understanding a patient’s style should affect how the therapist interacts with the patient. If, for example, one is excessively dependent, the patient may be fearful of being left alone, abandoned, or unprotected and would benefit from the therapist’s ability to set limits while conveying the intent to help. For those who require details and facts, the therapist should provide adequate information to calm any anxiety, while encouraging the patient to take charge of certain aspects of treatment.38 Giving the patient a structured way of keeping track of progress outside of the treatment session would engage the patient in a productive way.
The following questions reflect the different personality styles that one may exhibit:38
Does he/she need/demand special attention or appear particularly dependent?
Does he/she seek out as many facts as possible about the illness or recovery?
Is he/she particularly personable, and does the patient use charm to form relationships with the therapist?
Does he/she dwell on difficulties and suffering and not react positively to good news?
Does he/she overreact to criticism or feedback?
Does he/she act in a superior manner or seem entitled to special status?
In addition to identifying personality styles, being able to identify who can and cannot cope may depend on a series of exhibited characteristics.38 Table 2-2 lists the traits that reflect positive and negative coping characteristics.
Table 2-2 Characteristics of Coping38
| POSITIVE CHARACTERISTICS | NEGATIVE CHARACTERISTICS |
|---|---|
| Focused on immediate problems Flexible optimism Resourceful in selecting strategies Conscious of emotions that can impair judgment |
Intolerant of others Excessive use of defenses such as denial or rationalization Impulsive judgments Rigid or inflexible Tendency toward preconceived notions Passive |
To assess the meaning of illness, from a personal perspective and from a cultural perspective, is important. The meaning of health and illness may be related to having the physical and emotional capacity to do what one wants to do, when one wants to do it, and brings forth behaviors that support one’s attitudes and values.108 Personality and mental conditions may influence this assessment; depression, for example, may lessen one’s energy, interest, and commitment to engage in treatment or plan for the future. In addition, how one values and manages time and space, illness and loss, role and family, and work and leisure; how one interacts with others; and most importantly, how one defines self-worth may be determined culturally.70,108 Part of this process, however, is the recognition that the therapist is using one’s own culture and personality through which to consider the patient, to define illness and health, and to develop a therapeutic relationship. Just as understanding the patient’s personal and cultural view of illness and health is important to maintain a truly objective patient-centered approach, the therapist has an obligation for self-reflection on these same areas to avoid imposing one’s own values and attitudes on evaluation and treatment.
Intervention
Much has been presented on the likelihood of psychological conditions emerging at any point of the recovery and rehabilitation process. Indeed, such conditions can emerge after one is discharged home. While emotional needs should be addressed during rehabilitation, it is vital to assess one’s emotional status near discharge,17 as fears reemerge. Emotional distress of any sort, depression, and difficulty accepting one’s condition all lead to diminished participation.23 This is of concern since numerous studies have noted that meaningful engagement in activities and participation in one’s community affects the stroke survivor’s quality of life5,10,24,63,82,119 and diminishes caregiver strain.28,44,47
The ability to cope with trauma and life-altering events is important in one’s recovery. Coping strategies have been found to influence rehabilitation with many chronic conditions and may be affected by personality.18 Coping may be focused on the meaning of an event or situation, the problems that need to be solved, or the emotions elicited. Using social support, behavioral strategies, and cognitive strategies enable one to deal with stressors.17 This is consistent with other studies in which clusters of coping behavior have been categorized as active, passive, emotional, and avoidant,27 or reflect defense mechanisms.18 Effective coping bolsters a sense of self-worth, which adds to diminishing the stress of illness.89 Facilitating coping styles that reflect positive emotion is also important in recovery.83,84 Problem-solving coping strategies result in less distress, as does social support, information seeking, and engagement in activities. It is also useful to help the survivor use positive reinterpretation,17 which, like the other coping strategies, reflect positive emotion.
Recognizing and addressing the symptoms of emotional and psychological issues should be part of all treatment approaches, and in all phases of care. Attention to self-esteem by building competencies, setting realistic goals, and planning for the future, is an important consideration. Specifically focusing on role transition21 is also critical, as role satisfaction contributes to one’s sense of self. Surprisingly, occupational therapists, despite knowing that practice includes addressing community participation, are not attending to this area when providing treatment.19 Enabling one to engage in meaningful activities adds to quality of life. Working with family members, especially the caregiver, is important as they are at risk for psychological distress.
Summary
From the initial onset of a stroke through the process of recovery, one follows an unpredictable path. The individual is faced with a plethora of choices and challenges that are as unexpected as they are difficult. One is asked to relearn the activities one has always taken for granted, to assume new roles that may be unfamiliar or that challenge one’s self-worth, and to rewrite the future. Although patients aspire to return to their prestroke existence, their struggles are compounded by the emotional reactions to the loss of activities, abilities, and independence,42 by the potential of social stigma,88 and for some, by the real presence of psychiatric conditions.14
The psychological effects of stroke, whether directly related to the neurological insult or related to the emotional reaction to a disabling condition, must be assessed and treated to ensure optimal functional performance. Because stroke survivors are concerned not only with what they can do, but also with how others perceive and accept them,96 addressing the psychological, social, and physical concerns with equal value results in a satisfactory quality of life.
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