Physical illnesses are associated with an increased risk of experiencing psychological problems and disorders. People who are medically ill often have to endure debilitating treatments that can further contribute to this increased risk. Deterioration in quality of life and family functioning can also occur. The practice of psychotherapy for psychological and psychiatric problems that are secondary to physical illness is, in many cases, relatively straightforward and mirrors the principles and procedural elements of the application of such therapies in people without comorbid physical illness. In some instances, though, clinicians need to be aware of known certain issues in the application of a particular psychotherapeutic model to patients with psychological and psychiatric comorbidities and when applied to physical syndromes such as chronic pain or irritable bowel syndrome (IBS). This chapter will outline the issues relating to the application of psychotherapy for people with concurrent medical disorders, first from the perspective of the more common psychotherapy modalities and then within the context of the medical problems and disorders that therapists are most likely to encounter in their clinical work.
The field of clinical health psychology has been rapidly expanding in recent years. Important extensions have included the refinement of psychotherapies targeted at problems of treatment adherence (Horne and Weinman, 1999) and also the application of psychotherapeutic strategies to modify physical risk factors such as smoking and diet (Miller et al., 1997). Indeed, some psychotherapeutic interventions have developed as a result of work that has associated the etiology, genesis, and/or course of physical health problems with psychological processes (Wiklund and Butler-Wheelhouse, 1996). It has also been suggested that psychological factors may influence the extent to which physical illnesses result in mortality (Katon, 1996; Ormel et al., 1999; Wulsin et al., 1999). Although this chapter will refer to such work when it is relevant, the consideration of psychotherapies to modify health behaviors is outside the scope of this chapter and interested readers are referred elsewhere (Ogden, 2000).
The prevalence of psychological disorders among people with physical illnesses is higher than that seen within the general population (Martin, 2001; Chew-Graham and Hogg, 2002). In some cases, these disorders account for the psychological disorders that patients experience (e.g., an affective disorder due to a general medical condition) but by far the most common psychological disorders are those that present comorbidly with medical problems. These are adjustment disorders, anxiety disorders, and affective disorders. Adjustment disorders occur in approximately one-fourth of general medical patients and a further 12% of people experience symptoms of anxiety and depressive disorders. It is commonly accepted that prevalence estimates vary enormously (by as much as 40%) depending upon the strategies that are used to estimate the presence and severity of psychopathology. Studies that use self-report measures of anxiety and depressive symptomatology tend to produce higher estimates than studies that use standardized diagnostic classification systems such as the International Classification of Diseases (World Health Organization, 1992) and Diagnostic and Statistical Manual (American Psychiatric Association, 1994). Researchers have sometimes failed to address the potential confounding nature of somatic symptoms, which has resulted in a similar tendency to overestimate the prevalence of problems. The capacity of physical ill health and associated treatment to precipitate posttraumatic stress reactions is being increasingly recognized and the prevalence of PTSD among those with medical illness might be as high as 10%. Depressive disorders occur in approximately one-third of people with physical health problems and are more likely to occur in the presence of a life-threatening illness or when the problems are part of a chronic course. People who are exposed to treatment that is associated with unpleasant side-effects (e.g., prolonged pain or changed appearance) and people whose physical illnesses occur in the context of social adversity or low social support are at particular risk of comorbid psychosocial morbidity with a predominant depressive component (Smith, 2003). These reactions may also occur as a direct result of biological influences: the physical disorders themselves (e.g., a depressive episode mediated by thyroid dysfunction) or a medication-induced phenomenon (e.g., an anxiety reaction related to corticosteroids).
Psychopathology among the physically ill is often not detected (van Hemert et al., 1993), especially because clinicians have difficulty in distinguishing psychopathological symptoms from normal reactions, for various reasons. For one, patients may withhold information about their psychiatric symptoms. Also, some health professionals in highly medicalized settings are not sensitive enough toward the psychosocial dimensions of patient care and fail to recognize the necessity of identifying comorbid conditions. When managing psychological disorders among the medically ill, psychotherapy is one of a range of therapeutic strategies than can be implemented. Psychotropic medication can be prescribed alone or as an adjunct to psychotherapy. In considering which psychotherapy to apply to those who are both medically and psychologically unwell, it is important to take into account both the key features of the therapy being considered and of the medical illness that has been diagnosed. The next section of this chapter will describe major psychotherapeutic modalities in working with the medically ill.
This section will outline, in basic terms, the defining features of four modalities of psychotherapy that are most commonly applied to the psychosocial morbidity associated with a primary medical illness. The aims of assessment, the particular issues relating to the conceptualization of problems of the medically ill and key factors in psychotherapy implementation will be addressed within each section.
There are a number of factors that make cognitive-behavioral psychotherapy (CBT) particularly suited to addressing the problems associated with comorbid physical and psychosocial morbidity. CBT has demonstrated efficacy, is the treatment of choice, and/or has an established role in the management of the most common psychopathologies outlined above (DeRubeis and Crits-Cristoph, 1998). Healthcare providers are increasingly advocating that patients adopt an active self-management approach (Tattersall, 2002). This is in keeping with the CBT emphasis on skill acquisition. Individual response to illness is closely linked with cognitive factors such as symptom perception (Lacroix et al., 1991). Disease-specific illness representations often account for variability in emotional reactions (Prohaska et al., 1987) and self-care behaviors (Petrie et al., 1996). Patient beliefs are often related to behavioral aspects of interaction with the healthcare system (Ridsdale et al., 1999). A patient that has been experiencing fatigue, shortness of breath, a skin rash, and a headache may believe that these symptoms are all the result of different medical conditions, when this may not be the case. This perception of symptoms will have an influence on behavior. If someone believes that their shortness of breath and fatigue might be related to a viral illness then they will have a different behavioral response than someone who believed themselves to have an anxiety disorder.
Although there is a significant amount of evidence on the efficacy of CBT as an intervention for anxiety and depressive disorders, many of these studies have been conducted with patients without significant medical problems. There is no reason to expect CBT to be any less effective in treating psychological morbidity when it coexists with medical problems. However, it is only in the areas of functional syndromes, cancer, and chronic pain that research has specifically established CBTs effectiveness. Cognitive-behaviorally based therapies have been shown to improve anxiety and depressive symptoms experienced by cancer patients (Greer et al., 1992; Moorey et al., 1998), to reduce pain and additional use of psychological services among those with noncardiac chest pain (NCCP) (van Peski-Oosterbaan et al., 1999), and to have a positive impact on the full range of biopsychosocial variables associated with chronic pain (Morley et al., 1999). It has also been applied to the management of symptoms of asthma (Grover et al., 2002) and in a group based format for older adults with chronic obstructive pulmonary disease (Kunik et al., 2001). Enright (1997) has suggested that there is almost no medical or disorder that cannot be understood and treated using CBT. This is particularly reflected in the assessment phase of therapy where adjustment to illness and secondary psychological morbidities are assessed according to the contributory feelings, thoughts, and behavior.
The primary purpose of assessment within CBT is to elicit information for later synthesis within the case formulation (or conceptualization). Assessment should utilize a mix of observation, data from self-report questionnaire, semistructured interview, clinical interview, and the completion of diaries (White, 2001). Questionnaires are a particularly useful way of identifying information. An individual's behavior provides a number of clues to cognitive and emotional dimensions and can inform other elements of the process. Diaries can often be individually constructed for patients based on their symptoms and individual problem profiles. They also help patients appreciate the importance of beginning to work on their problems outside treatment sessions (and enable therapists to identify potential obstacles to the later implementation of therapy homework). The problem list is a very useful way of structuring the assessment session and assessment process (Persons, 1989). The act of exploring cognitive and behavioral dimensions of a problem is illustrated in the following session extract:
Therapist: So you have found that you cannot do the things that you used to do any more—this is one of the ways in which it has been difficult to get used to life after the operation
Patient: Yes, it is really dreadful
Therapist: How have you been feeling when you cannot do the things you used to? (elicit emotions)
Patient: Oh, very tired… exhausted (patient gives physical sensations which can be noted, but not emotions)
Therapist: So physically you have been tired and exhausted… is that all the time or just when it is difficult to do things?
Patient: Just when I need to do certain things about the house
Therapist: How does it make you feel emotionally, in your mood when you can't do the things that you used to do?
Patient: Oh fed up, down… really sad
Therapist: And when you are feeling this way—down and sad… What sorts of things do you think about—what passes through your mind? (elicit thoughts)
Patient: Mm… (sighs)… that I will never get over this, things will never get better
Therapist: When you think this way… what do you do, what is your reaction?
Patient: I just sit and do nothing… it all seems so pointless
The clinician can help the patient respond to the thought, ‘It's all so pointless’ and modify his behavior (of sitting and doing nothing).
Problem list assessment can then be complemented by the administration of a self-report measure, observational data, or a self-completed diary. Enquiry about childhood illnesses, parental health and parental responses to illness is often helpful when working with the medically ill as it provides information on early influences on representations of illness and medical treatments. Medical history is very important and including this as part of the assessment is a very helpful way of gaining information on the potential for interaction between medical historical events, patients’ thoughts, feelings, and behavior. This information may also relate to other significant life events, thoughts and feelings about medical and nursing staff, satisfaction with treatment, communication skills of staff, understanding of relevant medical information, and current medical management. People who are not willing to consider any potential relationship between psychological variables and their medical problems (even at the level of coping) are likely to find engagement in CBT difficult. When there is doubt about the suitability of CBT, therapists may wish to offer a finite number of sessions to such patients, toward the end of which they can collaboratively decide whether or not to continue treatment.
White (2001) has distinguished problem level and case level within the process of case formulation. Problem level formulation involves the application of cognitive-behavioral theory and principles to account for the main factors contributing to the occurrence, severity, and nature of problems at the situation-specific level. A case level formulation aims to synthesize the information contained in multiple problem level formulations and seeks to integrate this with historical information on the problems, details on core cognitive structures, the patient's life history and their current living situation. Critical incidents are essential components of a case level formulation and provide a rich source of information regarding the ways in which hypothesized cognitive mechanisms can manifest particular psychosocial problems as a result of the interface between belief and life event. They are usually easy to identify in that they are associated with the onset, exacerbation or recurrence of physical and/or psychosocial problems. There are a number of cognitive-behavioral theories and models that therapists can choose from to assist with the conceptualization and formulation of the psychological problems associated with chronic medical problems. The framework proposed by Padesky and Greenberger (1995) is particularly helpful for the construction of problem level formulations in CBT. The inclusion of a component consisting of physical variables makes it particularly useful in that it acknowledges the importance of taking physical symptoms into account.
There are obviously many strategies that are utilized within CBT. For the purpose of illustrating elements of therapy the focus of this section will be on generic themes that are often implicated in psychosocial adjustment to physical illness. These themes will be highlighted within the following case example regarding the application of CBT with symptoms of an affective disorder presenting in a patient with severe cardiac disease.
Mr R was a 55-year-old man who was referred to the first author with symptoms of a major depressive disorder that had responded only partially to antidepressant medication. He had had four previous myocardial infarctions and had undergone coronary artery bypass graft (CABG) surgery on three occasions. He had experienced repeated admissions to medical wards from the Accident and Emergency Department (Emergency Room) where he had presented with chest pain. He believed that something had gone wrong with his surgery. He reported a ‘constant pain’ in his chest and lumbar regions, unremitting and unreactive to external circumstances. He described times when his chest pain became more severe, starting with feelings of fatigue and exhaustion. These sensations were followed by shivering, shaking, and hot/cold sensations. He talked of this ‘coming out of the blue’ and occurring approximately twice per day. He said that he could not get a ‘good full day’ and that his pain would occasionally wake him from sleep. He said that the episodes had been occurring approximately seven times per day for a period of 2 months prior to assessment. He described the pain as ‘sharp’, ‘cramping’, ‘crushing’, ‘squeezing’, and ‘nauseating’. He presented as being extremely preoccupied with his cardiac disease, chest pain, and the degree to which this was interfering with his life.
The following assessment measures were administered during the initial assessment phase: Beck Depression Inventory (BDI); Beck Anxiety Inventory (BAI); Beck Hopelessness Scale (BHS); Ways of Coping Checklist (WCC); and the McGill–Melzack Pain Questionnaire (MMPQ). Mr R was unable to walk without tiring easily and he was unable to complete jobs he wished to begin around his house. He also reported being unable to plan ahead for the future due to a belief that he would become ill and that he would be a burden to other people. Mr R described the consequences of his continued experience of symptoms to be frustration. He was finding it increasingly difficult to trust medical staff involved with his care. His main coping strategies at the time of assessment were using medication and sitting or lying down in a quiet area.
Mr R's depressive symptoms were hypothesized to have begun when his expectations of his CABG surgery differed from the actual outcome. This discrepancy seemed to have activated a belief that he was likely to die—imminently—due to cardiac disease. Earlier experiences where family members had died seemed to contribute to the development of this belief which became reinforced when a medical practitioner told him that it was not possible to survive a fifth myocardial infarction (he had had four already). The hopelessness that he experienced following belief activation resulted in a reluctance to engage in any activity and an attentional bias toward pain. His depressive symptoms were hypothesized as being maintained by inactivity and cognitive distortions.
At the end of first meeting the interactive nature of chest pain and arousal was discussed. Mr R believed that his pain was present all of the time, a probable overgeneralization. Therefore, prospective monitoring was indicated as a way of providing further information on the pattern of pain symptoms, which would allow him to test accurately the validity of his belief (testing beliefs was an important part of therapy). The patient was instructed to monitor his pain hourly for 7 days using a scale from 0 to 10 where 0 indicated ‘no pain at all’ and 10 indicated ‘worst pain ever’. At the next session Mr R was surprised to learn that there were times when he experienced no pain and, indeed, that all his ratings were 5 or less and 85% of them were 0 or 1. Mr R's BDI scores reduced from 30 (severe) to 17 (mild) which he attributed to the pain monitoring exercise. This exercise also provided powerful evidence of the unhelpful nature of some of his depressed thinking Mr R also believed that he was unable to do anything and that he was unable to cope effectively with his chest pain. His clinician decided to intervene with these cognitions in the same way: by monitoring his episodes of pain, recording chest pain severity before and after his attempts to cope with it. Once again Mr R disconfirmed his dysfunctional ideas and recognized the importance of testing the validity of his automatic thoughts regarding the consequences of his cardiac disease instead of unequivocally accepting them as true.
Mr R was particularly concerned about his tendency to procrastinate, especially about tasks that he wanted to do around the house. He was able to identify the following cognitions: ‘It should be done in 2 days’; ‘I'll never do it in the time I've got’, ‘I cannot do anything in the time available’. When asked what he thought might have to change for him to be able to increase his activity levels and complete tasks, he responded ‘certain aspects of the tasks, the time I set aside to do them or the way I look at them’. Therapy focused on dividing an activity into smaller steps and testing negative automatic thoughts using an ‘antiprocrastination’ sheet. Given sustained symptomatic improvement, it was decided to begin to focus on the successful components of the intervention and how he might use these if there were similar difficulties in the future. In doing this Mr R identified the following to be of therapeutic value: reminding himself of how pain improves with rest, breaking activities down into smaller tasks, being flexible about how much and when to do things, and monitoring to determine the validity of thoughts.
The belief that people can learn from, and feel most supported by, others who share their illness-related problems led to the emergence of group psychotherapies for medical patients. Groups became popular in the early 1970s, promoted as unique and cost-effective treatments. Most early reports described loosely structured educational groups (Parsell and Tagliareni, 1974; Wood et al., 1978). However, education only appeared to increase anxiety for some groups (Wallace and Wallace, 1977) and knowledge was often forgotten (Rahe and Ward, 1985). Other groups were modeled on those for psychiatric patients and aimed at breaking through defensive denial; however, these were often problematic and uncomfortable for medical patients (Ibrahim et al., 1974). Improved mood and mutual support resulted when group discussion focused on coping with the illness, and when the goals were increased knowledge (Rahe et al., 1979; Bucher et al., 1984; Stern et al., 1984; Blumenthal, 1985; Crawford and McIver, 1985; Gamsa et al., 1985). More structured interventions soon followed, such as Spiegel's supportive-expressive therapy for cancer patients (Spiegel et al., 1981) and Sobel and Worden's Omega Project (Sobel and Worden, 1982). The group content expanded to include relaxation (Heinrich and Schlag, 1982), coping skills (Telch and Telch, 1986; Edgar et al., 2001), and stress management (Fawzy et al., 1990a) training. Overall, studies showed that group participants, as compared with no-group controls, demonstrated better knowledge of, and emotional adjustment to, their illness, with some evidence of reduced morbidity and mortality (Spiegel et al., 1981; Fawzy et al., 1993; Linden et al., 1996; Fawzy and Fawzy, 1998).
As many studies use convenience samples of patients the issue of suitability for group has not received sufficient attention. One must first understand the goals of group involvement. Cassileth (1995) describes two classes of goals for psychotherapeutic interventions for cancer patients that apply to the varied group models. The first are ‘process goals’, i.e., to provide skills and tools to help patients deal with their illness. Examples include: providing disease-related information, and teaching skills and providing opportunities for patients to experience/express emotions, to address the ‘meaning’ of the illness, to establish a sense of coherence and control, and to promote improved family communication. The second class are ‘primary goals’, that include decreasing physical and emotional sequelae of disease, and treatment (e.g., pain, nausea, depression, anxiety), and thus enhance adjustment, acceptance and quality-of-life. Skills to manage pain and mood, such as relaxation, activity pacing, distraction, and pleasant event scheduling, address these goals.
Given these broad goals, it may seem that most people might benefit from groups. In a study of 400 cancer patients in a coping skills group, it was found that coping skills training improved quality of life and mood and subgroup analysis found that gender, education, religion, marital status and prior self-help experience did not affect outcome (Cunningham et al., 1993). A few studies have suggested that patients with low internal locus of control (Zakus et al., 1979) or high hypochondriasis (Moore et al., 1984) may not benefit from a group. It has also been suggested that such patients may have a negative impact on the effectiveness of the group for other members, suggesting that they should be excluded.
The question of homogeneity of groups has also been raised, i.e., should groups be disease, or even stage-of-disease, specific? The vast majority of studied groups address one specific disease, e.g., cancer or heart disease. A report of a group of heterogeneous cancer patients notes that greater satisfaction was found with diagnosis-specific meetings (Petersson et al., 2000). As most groups include a strong didactic component, and much of the benefit derives from contact with others with similar experiences, combining patients with varied diseases in one group is counter-intuitive. However, Jon Kabat-Zinn (1990) has adopted this approach to teach mindfulness meditation to patients in large heterogeneous groups and reports notable success. A related question is when should group be chosen over individual treatment? In a nonrandomized study of melanoma patients, those in a group showed greater improvement than those seen individually (Fawzy et al., 1996). In contrast, a study of breast and colon cancer patients showed significantly greater benefit for individual versus group treatment. In this study, patients were randomly assigned to Nucare (a short-term psychoeducational coping skills training intervention) presented either individually or in a group format, or to a support group or no intervention control. Individual Nucare patients showed significantly greater improvements in well-being; however, type of cancer, gender, and patient choice of format were all factors that affected the results, and authors noted significant difficulties in establishing functioning groups (Edgar et al., 2001). In two other studies (one a meta-analysis), no differences in emotional distress between group and individually treated patients were found (Cain et al., 1986; Sheard and Maguire, 1999). These conflicting findings fail to clarify the issue. Clinical expertise suggests that the decision to recommend group versus individual treatment should be made within the therapist's conceptualization of the patient—considering the degree to which the patient is likely to be able to engage in, and benefit from, group involvement. In addition, one must take into account the patient's preference, which is affected by personality, openness, and need for social support, and such logistical considerations as time, cost, and access.
There is also the question of what type of group to develop. Few studies have actively compared different types of groups. One study compared group coping skills instruction to a support group and to no treatment. They found coping skills training (CST) patients improved, support group patients remained the same and no treatment controls deteriorated (Telch and Telch, 1986). CST included instruction in relaxation, stress management, assertive communication, problem solving, pleasant activity planning, and affect regulation. Further research is needed to determine which types or lengths of groups, or types of leaders, benefit which patients, or in what ways these benefits may manifest.
Given limited mental health resources, should groups be offered to all patients (the standard in most studies) or only to those individuals who show evidence of significant distress or difficulty coping? A meta-analysis of cancer trials noted that only four of 25 trials specifically recruited subjects suffering, or at risk of, high distress (Sheard and Maguire, 1999). Simonton and Sherman (2000) propose a group model for cancer patients that tailors the intervention to the patient's stage of illness and medical treatment. They recommend brief, educational groups for newly diagnosed patients, time-limited skills training groups for those in, or recently discharged from, active medical treatment, and longer-term, less-structured groups that emphasize support and emotional expression for patients later in the process. Similarly, Harper et al. (1999) propose providing an open attendance, ongoing support group for cardiac patients that welcomes family members. They recommend focused discussion of themes that consistently emerge such as: frustration at life-style limitations, anger at overprotectiveness of family members, anger at self for lack of adherence, and sadness about losses that accompany medical illness.
Finally, the issue of appropriate outcome remains unresolved. Most reports assess psychosocial outcomes, such as changes in anxiety, depression, coping skills, knowledge, and adherence. However, Spiegel's well-known follow-up of metastatic breast cancer group members that found significantly longer survival time (36.3 months for group members versus 18.9 months for no treatment controls) led to a great deal of interest in the effect of group social support on morbidity and mortality, described by Andersen as the Biobehavioral Model of cancer stress and disease course (Andersen, 2002). Andersen's model explores how disease endpoints, (e.g., recurrence, disease-free interval, mortality) can be affected by psychological (e.g., stress), behavioral (e.g., adherence), and biologic (e.g., immune response activity) factors. Studies of the effect of group interventions on these variables are inconsistent, with some showing improved survival time and immunologic response for cancer group members (Spiegel et al., 1989; Fawzy et al., 1990b, 1993), but others failing to demonstrate such a connection (Ilnyckyj et al., 1994; Cunningham et al., 1998; Edelman et al., 1999; Schrock et al., 1999; Goodwin et al., 2001).
In addition to education and skills training, group therapy can foster interactions and opportunities that are highly meaningful for medical patients (Blake-Mortimer et al., 1999). Group process refers to this ebb and flow of relationships and discussions. The process occurs around common patient themes that, when attended to by the group leader, can foster growth and opportunities for change.
The most important process is enhanced social support through group cohesion. Illness often fosters social withdrawal and isolation, yet evidence is strong that social connections are important to health (Mulder et al., 1992; Smith and Ruiz, 2002). The unique caring bonds that are forged with similarly ill individuals who can form a close-knit unit are consistently reported by patients as being highlights of the group experience (Spiegel, 1993; Harper et al., 1999). A second process fostered in group is the expression of emotions. Emotional expression has been associated with better coping and adjustment, and even with improved medical outcomes (Pennebaker and Beall, 1986; Smyth, 1998; Smyth et al., 1999). The group leader's words, and behaviors modeled by emotionally expressive group members, can allow the experience and expression of deepest feelings within a safe environment.
Group patients can also learn to adopt active coping styles. They may discuss ways to improve communication with family members, which has been shown to reduce distress in cancer patients (Spiegel et al., 1983). Or, stress reduction skills (Gier et al., 1988; Bennett et al., 1996) can be modeled, practiced, and reinforced, as members encourage and guide each other. This process leads to enhanced feelings of control and optimism. Similarly, discussion about life-style changes due to illness, disability and even the possibility of their own death will help some members grieve their losses and face their fears, while others may find a sense of meaning and purpose by helping others (Yalom, 1985; Greenstein and Breitbart, 2000; Wiens and Kellogg, 2000).
Anne was a 69-year-old woman who had ovarian cancer. She had attended three 8-member support group sessions and had been quiet. When encouraged to speak, she said that she just wanted to listen, that she was ‘dealing with my cancer quite well’ and didn't need to talk. At one particular session, another member, Barbara, was absent. The therapist informed the group that Barbara was in the hospital, that her cancer had recurred and she was not doing well. The group was quiet. The therapist asked how they were feeling. At that point, Anne burst into tears. The following is an extract from the group therapy session:
Anne: I thought I was doing okay but this really sets me back. I knew I shouldn't come to a group like this, that it would be depressing and people would die. I don't think I can handle that.
Therapist: How do others feel about Barbara's recurrence and illness?
Cathy: It's hard to hear about. Barbara seems like such a nice person. It isn't fair! And, it makes me scared. I knew before that my odds weren't good, but knowing someone who is having a recurrence is really terrifying! It could be me next.
Anne: That's just how I feel. I try to be positive and optimistic, but it's hard to do that when this happens.
Therapist: Are others trying to feel positive all the time? Is that hard? Does it work?
Donna: I think it's good to try to be positive, but we have to be realistic too. And, it definitely isn't good to hide your bad feelings and fears. That just adds more stress.
Anne: But what do you do when your family tells you to think positive thoughts, they don't want to hear any negative thinking?
Donna: I just tell them that I'm trying to be optimistic, but they have to realize that I'm scared, and sad, and that those feelings are important too. I think they don't want to hear that I'm scared because they're scared too. The closest times have been when we all say what we're really feeling, even if we cry together. That seems to help us be able to laugh together, too. I know that sounds weird…
Anne: No, it doesn't. I know just what you mean. I think I have to sit down and really talk to my family and let them know where I'm at. It will be hard, but I think we'll all be better off than pretending. Thanks. That's what I'll do.
This is an example of using the group to help patients vent their feelings and learn from each other how to handle them, even when the feelings are negative and difficult to experience. Note that the therapist's role is to foster discussion between group members, by looking for common experiences and encouraging members to talk. In a well-functioning group, the therapist often has little to say, as the members talk to each other, raise issues openly, share positive coping efforts, and support each other's growth. The group went on to discuss other communication issues, as well as their fears about death, pain and loss of function. At the end of the session, they decided to make a card for Barbara to let her know they were thinking about her and missed her.
Psychoanalytic concepts can be utilized successfully to formulate the clinical problems of the medically ill and to inform practice when applied as a therapy (Grossman, 1984/5).
The threat of pain, disfigurement, limitations, and death associated with medical illness can result in anxiety, depression, and problems with adaptation and coping, even for psychologically healthy individuals. A psychodynamic perspective contributes two major areas of focus (Postone, 1998; Straker, 1998). Illness is, above all, a challenge to one's sense of self, a threat to the ego (Backman, 1989a). A psychodynamic approach focuses on understanding the unique psychological issues that an individual brings to the illness experience. Early childhood experiences that define one's self can yield core conflicts that may be triggered by serious illness. Thus, patients may be especially distressed in dependent situations, or vulnerable to conflict with authority figures. The patient role can exacerbate these dependency/authority conflicts. Other common intrapsychic conflicts that can be rekindled by a medical illness involve separation/abandonment and trust.
Also, a psychodynamic perspective includes awareness of each individual's unique defensive structure (Viederman, 1974; Straker and Wyszynski, 1986). Defenses are ways, often unconscious, that we routinely try to manage distressing emotions, block conflicts from awareness and thus maintain our sense of self. Examples include denial, regression, repression of affect, and intellectualization, as well as humor and spiritual seeking. When defenses break down patients become emotionally overwhelmed and unable to cope proactively (Backman, 1989b). The psychodynamic therapist typically meets individually with the patient, although many group therapists also work from a psychodynamic perspective. A major goal is to enable the patient to experience distressing emotions, and express them within a nonjudgmental, supportive relationship. The therapist also helps him/her explore underlying conflicts, and understand their expression within current relationships. This process moves patients from rigid, limiting defenses to proactive, positive coping efforts.
The therapeutic relationship is key to the process. Patients experience deep trust within the relationship, can let defenses down and open up to emotional exploration. Patients may transfer old feelings and ways of relating established with parents on to the therapist, causing distortions and conflict. Illness often fosters dependency on the therapist, who can become idealized as the ‘only one who understands’. Patients can become extremely angry when the nurturance they seek is not provided by their therapist. Patients who have unresolved authority issues will often resist therapists’ efforts to guide or explore. The opportunity to work through these issues, to accept mature relationship boundaries, to face dependency needs or work with, not against, an authority figure can provide significant opportunities for emotional growth (Stoute et al., 1996). Therapists also develop countertransference feelings, i.e., emotional responses to patients that may be rooted in therapists’ own needs and conflicts. The therapist may feel out of control and helpless to impact the illness. They may be uncomfortable with medical changes, e.g., scars, blood, amputations. They may fear loss and sadness if the patient dies. They may struggle with a need to nurture the patient and foster an unhealthy dependency. And, therapists will use their own defenses to cope with these feelings, which may help or hinder the therapeutic relationship.
Psychodynamic psychotherapy is often referred to as ‘the talking cure’. Yet, all therapeutic approaches involve talking, so what's the difference? Psychodynamic psychotherapy emphasizes the uniqueness of the individual, especially in two domains. The therapist pays attention to the patient's deepest unexpressed feelings, to help him/her understand and process those feelings. It is theorized that when the patient does not need to expend emotional energy defending against feelings he/she is better able to cope with illness-related distress. Also, psychodynamic psychotherapy highlights unresolved childhood conflicts. By helping patients understand the role that these conflicts play in current relationships, the patient can gather and experience appropriate support and reestablish a sense of personal control.
PM was a 45-year-old single white female who had been diagnosed with type 1 diabetes at age 11. Type 1 diabetes is a metabolic disease, patients must inject insulin regularly throughout the day and closely monitor their blood sugar levels, diet, and activity. Diabetes frequently leads to various medical complications including eye, heart, and kidney disease. At the time of psychotherapy assessment PM's complications included uncontrolled high blood pressure, digestive problems, eye disease (retinopathy), and end-stage renal (kidney) disease (ESRD). Patients with ESRD must undergo hemodialysis, a process in which they are connected to a machine for several hours that cleanses their blood of impurities. She had commenced hemodialysis three times weekly 1 year prior to attendance for assessment. She presented with symptoms of major depressive disorder, including depressed mood, anhedonia, decreased appetite (10 pound weight loss), terminal insomnia, guilt, memory and concentration problems, and passive suicidal thoughts (i.e., ‘Sometimes, I wish I wouldn't wake up’) but no intent or plan. She had been in poor control of her diabetes since diagnosis, with poor adherence to recommended diet, exercise, and BG testing. Evidence of significant weight gain indicated that she was not consistently restricting fluid intake as is required. She was on Prozac, and other medications for her medical problems.
The patient had been chronically dysthymic since her early adulthood, intermittently treated with psychotherapy and antidepressants. She became more seriously depressed when she began dialysis and was seeking therapy for ‘emotional support’. She had been school-phobic as a child and highly anxious when separated from her mother. Academically, she was an excellent student; in high school she was valedictorian. However, when she left home for college, she became depressed and anxious, returned home, and took 8 years to complete her 4-year degree. Her mother died suddenly (unknown cause) when she was aged 21. She described that relationship as ‘extremely close, she was the only person who really loved me’. Her relationship with her father was described as ‘distant, I don't bother him and he doesn't bother me’. She had two older siblings, lived with her father, and worked as a waitress. She had no close friends. Her history suggested that she had difficulty separating from her mother, and that attachment and loss themes were central to her intrapsychic experience. Her mother's sudden and unexplained death contributed to these conflicts, as she was unable to work successfully through the individuation process to develop her intellectual potential and establish herself as an independent adult. Her unmet dependency needs and grief over her mother's death caused significant emotional distress, but she had low tolerance for negative affect. She defended against these feelings by acting-out. For example, when she watched a TV show about a mother–daughter relationship and became sad, she binged on sweet foods. The core conflict was around dependency issues, and the process focused on the transference, as PM tried to draw the therapist into the maternal role. Hemodialysis also rekindled dependency and attachment issues. The therapist maintained a supportive and caring stance within a well-defined relationship, interpreted her acting-out behaviors, and attempted to help her develop other ways of coping with distress. The limits of the relationship engendered anger at the therapist. As she was encouraged to express these angry feelings, the therapist interpreted the anger as being rooted in unresolved anger towards her mother, whom she felt had ‘abandoned’ her. She was then able to experience those feelings, and the sadness she also felt. The patient's opportunity to work through these unresolved feelings without fear of loss of the relationship was a major focus of treatment.
Having someone who is physically ill within the family can have a significant impact on one or more members of the immediate and extended family (McCorkle et al., 1993; Kissane et al., 1994). It can be as psychologically demanding to be a family member as a patient—and sometimes more so (Soskolne and Kaplan De-Nour, 1989; Astudills et al., 1996). In most cases family members act as a helpful resource to support and assist the patient (Xiaolian et al., 2002). Indeed, families are often very involved with decision-making about treatment and tend to provide one another with emotional support throughout the duration of the physical illness. There are, however, some circumstances where illness results in problems within the family (Lyons et al., 1995). In some instances it will be necessary to consider family therapy targeted at the family system. Family therapy has traditionally been applied to the psychosocial needs of families with a physically ill child (Finney and Bonner, 1993; Wood, 1994), to children and adolescents (Cottrell and Boston, 2002) and with mental health problems (Barrett et al., 1996), though this has been changing over the past two decades with ‘medical family therapy’ developing the focus on families who have a member with a chronic illness or disability (Doherty et al., 1994).
Basic information on family composition is essential for any assessment that might result in family therapy for families with a medically ill member. This is a core competency within the prequalification training of most mental health professionals. This information can then be used to explore important dimensions of family response to illness. There are usually some members of the family who have more frequent contact with the person being assessed, who demonstrate greater empathy and understanding, who offer more practical support and in whom the patient will find it easier to confide. Each family member has his or her own understanding of the index patient's experience of illness and, while it will not always be possible to speak with each member of the family at the same time, it is important to gather as much information as possible about different perspectives. Clinicians should consider the impact of the illness on each family member. The assessment process will need to take account of the age and developmental stages of the constituent family members.
Family ‘myths’ are also important. These may relate to beliefs that are held about the disposition of a family member (‘She has always been vulnerable and unable to deal with stress’) or processes within the family (‘We function best when we avoid talking about disagreements’). These often influence and may mirror beliefs shared by the medically ill patient. This is sometimes referred to as the ‘family world view’ or the ‘family paradigm’. Clinicians may not come into contact with all members of the family at the one time (as might traditionally be the case in an outpatient family therapy clinic) and it might take some weeks to build up a picture of how a particular family has responded to illness. Therapists should determine the ways in which families have addressed problems in the past as this may lead to the identification of successful strategies or assist the therapist in recognizing characteristic problems and/or responses to problems within the family system.
In general, families (as do individuals) tend to cope with conflict or problem situations in similar ways throughout life. This is usually by directly confronting the situation in some way or by avoiding the situation. Family members can be asked ‘Which of these styles would have best characterized your way of resolving problems when you were growing up?’ and asked to provide examples of the ways in which other people might perceive their family to have reacted to other significant events. Clinical staff who work within inpatient settings are in the unique position of being able to meet many family members in the course of their involvement with inpatient care. They often make observations that can be useful in conceptualizing family response to illness. Therapists need to appreciate the way in which individuals within the family are reacting to the index patient and they need to take time to explore each of these individually. This will assist with the formulation of a shared understanding of the family's way of responding to illness and the difficulties that the family unit is facing.
It is important to think of family case conceptualization both in terms of family factors and illness specific factors. There may also be issues that are specific to the psychosocial presentation. For example, a 41-year-old male developed multiple sclerosis and major depressive disorder. The conceptualization needed to take account of the course, severity, and symptoms of his illness, family factors and reactions, and psychosocial issues contributing the overall presentation. It was important to identify the patient's neurological symptoms, the distress of his children who believed he was going to die, and the impact on the family of the patient's inactivity, complicated by his depressive belief that he would fail at any task he tried.
Complex consequences can develop when family members have differing illness representations. Misunderstandings that are the product of such differing views of physical illness can contribute to distress or, in some cases, to major family conflict. Family members may also have different feelings about the way in which the index patient responds to his or her illness. Most families will gain mastery of the situation in the initial phases. Some families have difficulty modifying their initial response to the illness when the acute phase has passed (Kreutzer et al., 2002). It is important to track responses within the family, with particular emphasis on the extent to which these responses seem to take account of changes in illness course, treatment or prognosis.
Most family oriented interventions seek to enhance communication and facilitate relationships that are sensitive to the emotional and psychological dimensions of being physically ill. Therapeutic work often focuses upon enabling families to ensure that physical illness does not become a dominant feature in influencing all relationships and responses to everyday events. Families can find it useful to focus on the identification of shared assets and to engage in a process whereby they begin to prioritize the problems that face them. The majority of families are able to maintain a degree of stability, ensuring that the nonmedical needs of the family are addressed. Therapeutic time may need to be devoted to reinforcing the nonmedical needs of the patient (and possibly those of key family members). This is particularly the case when a conceptualization reveals that families have been neglecting well-being as individuals and within a family.
The first section of this chapter has considered two important dimensions relating to the provision of psychotherapies with those who are medically ill. The first relates to the predominant therapeutic modality. The next is related to the focus of the therapeutic relationship and whether it will be individually based or encompasses more than one person. The process of assessment, case conceptualization, and therapeutic work will not only differ according to these dimensions but will also be influenced by the nature of the medical illness that patients are experiencing. The next section of the chapter outlines the issues relating to the provision of psychotherapy with common presenting physical disorders.
Faulkner and Maguire (1994) have suggested that psychosocial adjustment to cancer is associated with six hurdles: (1) managing uncertainty about the future; (2) searching for meaning; (3) dealing with a loss of control; (4) having a need for openness; (5) needs for emotional support; and (6) needs for medical support. They suggest that a failure to deal with these results in psychosocial problems. Increasing medical advances have meant that people with cancer are now tending to live longer than used to the case, a factor that means that cancer is increasingly being conceptualized as a chronic illness. Patients who are told that they have cancer experience distress, but some have a normal adjustment reaction with limited distress that does not cause lasting psychological problems. Others experience psychological problems that significantly interfere with their quality of life; some of these will develop symptoms of an adjustment disorder, major depressive disorder, or an anxiety disorder (Derogatis et al., 1983).
Cancer treatment is also associated with a number of psychosocial concerns, some of which comprise quality of life and contribute to anxiety or depression. Nonphysical treatment side-effects such as anger, anxiety, or apprehension are often rated by patients as being more severe than physical side-effects such as nausea or hair loss (Coates et al., 1983). Indeed, some patients drop out of chemotherapy because of psychological problems (Gilbar and Kaplan de Nour, 1989). Some treatment procedures (e.g., bone marrow transplantation) result in psychological problems because of the particular demands that accompany them (Andyknowski et al., 1995). Many patients have to face treatment regimens that are difficult to tolerate, may involve behavioral demands such as frequent hospital visits and levels of motivation that may be difficult to generate or sustain. Advances in drug therapies have resulted in a reduction in the incidence of nausea and vomiting associated with chemotherapy. However, conditioned nausea and vomiting do still occur and aversions to food can also develop. Even after the end of treatment, patients’ lives may be affected throughout the follow-up period, as they attend appointments to determine whether the cancer has returned.
Some psychological problems are more commonly experienced at particular times during the patient's ‘cancer journey’: at diagnosis, during the early months of treatment, at the end of treatment, at the discovery that the cancer has spread, or at recurrence. Some patients find that they notice persistent negative psychological consequences only at the end of treatment (Ell et al., 1989; Arai et al., 1996). Most, however, do not experience any lasting negative psychological consequences. Others develop an increased vulnerability to future psychosocial problems as a result of the impact of an episode of cancer and cancer treatments. Some become more avoidant in their thinking about illness, having greater illness concerns and diminished capacity to work. Cella and Tross (1986) provide a useful framework for understanding the stages that someone with cancer may pass through.
Psychoeducational and cognitive-behavioral interventions are the most commonly ‘problem-focused’ therapies for cancer patients. Most of the empirically validated psychological interventions for cancer-related morbidity have been short term, structured, and problem focused (Devine and Westlake, 2003; Meyer and Mark, 1995). Psychoeducational interventions are typically of short duration and concentrate on didactic teaching of skills and strategies. This is in contrast to cognitive-behaviorally based therapies that include instruction in specific skills and strategies but that are based on a cognitive and behavioral conceptualization of the individual patient. These therapies typically seek to help patients reduce their emotional distress by fostering control and regulating affective responses via the application of behavioral strategies (e.g., activity scheduling) or cognitive strategies that address distortion in thinking and/or enable people to test and develop more helpful alternatives to their dysfunctional ideas (Antoni et al., 2001; Moorey and Greer, 2002; Nezu et al., 2003).
Supportive-expressive therapy has been traditionally delivered in a group and in the context of research activity that has sought to evaluate the impact of participation in such groups on survival (Classen et al., 2001). One of the major goals of this modality is to enable individuals to express all emotions (negative and positive) (Giese-Davis et al., 2002). Based on the premise that most people tend to avoid the fear and anxiety associated with the possibility of death, supportive-expressive therapy enables someone to express and tolerate the affect associated with thoughts of death and dying. This has been referred to as ‘detoxifying death’ (Spiegel and Classen, 2000). It has been suggested that therapy with this focus may be more appropriate for patients with advanced cancer.
Kissane et al. (1997) have integrated elements of cognitive, supportive, and existential therapies in group therapy, including elements of Spiegel's work (i.e., the development of a supportive network and addressing issues of death) with an existential focus on the management of uncertainty and awareness of one's own mortality. Supportive-expressive work shares some similarities with other modalities. The ‘detoxification’ of death, for example, enables patients to express their feelings about death. It can also, from a cognitive perspective, provide patients with evidence about the impact and consequences of the expression of emotion. In practice, most clinicians tailor therapy to the individual, taking account of the presenting problems, and emphasize particular educational, supportive, expressive, or existential elements. Watson and Burton (1998) and Barrowclough (1999) provide helpful overviews of how psychological interventions can be applied in cancer settings.
Over the past two decades, various researchers have examined the influence of psychosocial factors on mortality and the potential benefits of psychological intervention on survival. Spiegel's well-known follow-up of metastatic breast cancer led to a great deal of interest in the effect of group social support on morbidity and mortality (Spiegel and Classen, 2000). Other studies of group interventions have been inconsistent, with some showing improved survival time and immunologic response for cancer group members (Spiegel et al., 1989; Fawzy et al., 1993; Fawzy et al., 1995), but others failing to demonstrate such a connection (Ilnyckyj et al., 1994; Cunningham et al., 1998; Edelman et al., 1999; Schrock et al., 1999; Goodwin et al., 2001). The debate continues (Yalom, 1985; Spiegel, 2001; Sampson, 2002) and further research to address these issues is being carried out (Kissane et al., 2001; Cunningham and Edmonds, 2002). Walker et al. (2000) has reported that a relaxation-based intervention prolonged survival. Patients may request psychotherapy to prolong their survival but clinicians cannot ethically claim to prolong survival by directly influencing disease-specific biological processes. On the other hand, psychotherapy might have a positive impact on treatment adherence or mood and might influence host defenses or ameliorate chemotherapy induced immunosuppression. Walker et al. (1999) have shown that greater mood disturbance is associated with poorer response to chemotherapy. Watson et al. (1999) have demonstrated that high helpless/hopelessness scores on the Mental Adjustment to Cancer Scale are associated with a moderately detrimental effect on survival. It is therefore possible that psychotherapy targeted at helplessness and/or hopelessness might produce moderate survival benefits.
The establishment of a psychotherapeutic relationship with someone who has an incurable disease can be overwhelming to the clinician (Anderson and Barrett, 2001). There are also some circumstances when the procedural elements of psychotherapy may seem irrelevant in the face of the uncontrollable nature of impending death. However, experienced therapists can significantly enhance the quality of life of someone with an incurable disease, if they vary therapy appropriately. It is often insensitive to focus upon the customary therapeutic elements such as defense mechanisms, conflicts, or automatic thoughts when someone is dying. Instead ‘being with’ a dying patient, listening to his/her thoughts and feelings, may be most helpful. Facilitating emotional expression is important, therapists should not underestimate the value of sensitively combining listening and emotional expression with more structured and problem-oriented therapy tasks (such as addressing dysfunctional thinking about cancer or death). Therapists sometimes avoid the latter on the basis of a belief that to use problem-focused therapeutic strategies is to dismiss the distressing reality of incurable disease.
Newell et al. (2002) have stated that the results of their systematic review of psychological therapies for cancer patients ‘lead them to be considerably less enthusiastic,…, than do the results of other recent reviews’ (p. 581) and that these other reviews have included trials with many methodological shortcomings. They have suggested that future studies on psychotherapy with cancer patients should strive to meet a series of 10 indicators to reflect good practice in the conduct of randomized controlled trials (see Table 33.1).
Diabetes is a serious chronic illness that can result in blindness, amputations, heart disease, and stroke. Individuals with diabetes must control blood glucose (BG) through vigilant self-care, including frequent blood tests, dietary control, exercise, foot care, and medications. Results from two ground-breaking studies convincingly demonstrated that intensive efforts to change behavior to maintain tight BG control can delay or prevent complications (The Diabetes Control and Complications Trial Research Group, 1993; United Kingdom Prospective Diabetes Study Group, 1998). Another landmark study showed that intensive behavior change to promote weight loss and increase activity can even prevent diabetes onset of those at risk (Knowler et al., 2002).
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Table 33.1 Newell et al. (2002) suggested quality indicators for conducting randomized controlled trials of psychological therapies in cancer
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More than most diseases, patient self-management behaviors strongly affect the outcome and course of diabetes and it is important to recognize the psychological disorders that are frequently comorbid with diabetes. Major depressive disorder is diagnosed twice as often in people with diabetes as in healthy people (Popkin et al., 1988; Wells et al., 1989; Weyer et al., 1989; Gavard et al., 1993). Research has demonstrated a clear link between depression and high BG (hyperglycemia) (Lustman et al., 2000b), and that depression may not improve without treatment, often persists and, once treated, is likely to recur (Kovacs et al., 1997; Lustman et al., 1997; Peyrot and Rubin, 1999). It is unclear if the link involves hormonal changes common to both diabetes and depression, the effect of chronic high BG levels, and/or the psychological burdens of the disease, including loss of autonomy, shame, fear, and anxiety about future complications. However, it is clear that the hopelessness of depression can negatively impact self-care. Studies suggest that psychopharmacological and psychotherapeutic treatment improves depression and may also improve BG control (Lustman et al., 1998, 2000).
Anxiety disorders are also more common in individuals with diabetes and associated with high BG levels, although this area warrants further research attention (Peyrot and Rubin, 1997). This may reflect endocrine changes related to the activation of the sympathetic nervous system common to both diabetes and anxiety disorders. A study that demonstrated antianxiety medications improved BG control, even for individuals without a diagnosed anxiety disorder, supports this hypothesis (Lustman et al., 1995). Alternatively, anxiety may be the psychological response to a disease with debilitating and frightening complications. Daily and major life stresses have also been implicated in poor self-care and hyperglycemia (Gonder-Frederick et al., 1990; Aikens et al., 1992; Viner et al., 1996; Lloyd et al., 1999). In a recent study it was shown that stress management training can improve BG control (Surwit et al., 2002), but results in this area are less consistent.
Young women with diabetes (usually type 1) are particularly vulnerable to comorbid eating disorders, which are associated with a high likelihood of poor BG control and complications (Rodin et al., 1986; Rydall et al., 1997; Daneman et al., 1998). Insulin use is associated with weight gain, which may enhance sensitivity to body image in our weight-conscious society. As diabetes requires constant attention to diet, one can hide an eating disorder that is caused by other factors. Also, women can ‘purge’ by manipulating insulin. If a young woman binge eats, she can deliberately take a smaller dose or skip insulin, so the body is purged of excess calories without inducing vomiting. Thus, one cost of comorbid eating disorder may be hyperglycemia.
In addition to assessing these major mental illnesses, researchers have demonstrated that diabetes and its consequences place significant emotional and cognitive burdens on patients, leading to impaired quality of life for many who may not have a diagnosable mental illness (Polonsky et al., 1995; Rubin, 2000). Health-related quality of life is defined as how one's life is affected by disease and health. It includes factors such as how much a disease impacts how well an individual functions physically, emotionally, and socially. Psychotherapy is often recommended to help patients accept and proactively manage these issues to improve their overall quality of life (Delamater, 2000).
As managing diabetes involves making major behavioral changes, the psychological intervention research has grown. One controlled study of psychoanalytic treatment of children with type 1 diabetes demonstrated improved BG control following intensive inpatient treatment that included three to four times per week psychoanalytic treatment for an average of 15 weeks (Moran et al., 1991). However, most of the intervention studies have focused on cognitive-behavioral training programs that target these behaviors, commonly referred to as diabetes self-management education. These interventions have been shown to result in reduced healthcare costs and hospitalizations, improved knowledge, self-care, quality of life, and BG control (Rubin et al., 1989, 1993; Clement, 1995). A large body of research specifically focuses on changes in eating and exercise to promote weight loss (Jeffery et al., 2000). In individual or group sessions, strategies that promote life-style change are taught, behavior change is reinforced, and obstacles to change are addressed. These strategies include: focusing on a specific self-care behavior (e.g., BG testing); setting clear and reasonable goals; stimulus control strategies (e.g., not stocking high fat foods); behavioral contracting; and enhancing social support and reinforcement. More broadly defined ‘coping skills training’ identifies specific cognitive strategies to deal with situations that make adherence difficult, e.g., teaching assertiveness to deal with peer pressure to eat inappropriate foods. These interventions can result in behavior change and improve BG control, diabetes self-care, and quality of life in the short term, but concerns exist about lasting benefits.
CBT has also been used as an intervention for depressed individuals with diabetes, much as for other groups (Lustman et al., 1997, 1998). By challenging and correcting irrational beliefs, and teaching positive coping skills, such as relaxation, cognitive reappraisal and realistic self-talk, therapists help depressed diabetes patients resolve their depression, which can also result in improved BG control.
Family environment factors, such as high cohesion, low conflict, and good communication skills, relate to BG control, adherence, and other clinical outcomes (Herskowitz et al., 1995). Most research has been with children and adolescents with type 1 diabetes (Hauser et al., 1990; Jacobson et al., 1994). The role of the family for adults, and children with type 2, is only beginning to be studied (Trief et al., 1998), but early data support the importance of family support for coping with diabetes (Trief et al., 2001, 2002).
Family therapy interventions are generally aimed at improving family communication and decreasing family conflict. Studies with type 1 adolescents and parents has aimed to encourage parents to share responsibility for diabetes self-care (Anderson et al., 1999), enhancing problem-solving abilities, communication and conflict resolution skills (Wysocki et al., 2000). While family therapy interventions are often evaluated by measuring their impact on BG control, the importance of psychosocial outcomes, such as decreased parent–child conflict and increased parental involvement, are also emphasized.
Meeting with others to share feelings and thoughts about coping with the burdens of diabetes, and to discuss problem-solving techniques, can reduce anxiety and isolation, enhance adjustment and promote self-management skill building. Studies with adolescents have found that BG control improves and diabetes-related distress decreases when adolescents are involved in a peer group support program (Anderson et al., 1989; Grey et al., 1998).
Group therapy is also valued as a practical, cost- and time-efficient way of reaching patients with diabetes. Therefore, most of the adult research examines interventions that are delivered in a group format, such as coping skills training (Rubin et al., 1993), behavioral weight loss programs (Jeffrey et al., 2000), stress management training (Surwit et al., 2002) and BG awareness training (Cox et al., 1989). However, these studies have not compared group with individual therapy, and one cannot conclude group therapy is more effective than individual.
While evidence supports the value of psychotherapeutic interventions for patients with diabetes, many research and clinical issues need to be addressed and are outlined in two systematic reviews (Delamater et al., 2001; Gonder-Frederick et al., 2002). The psychotherapy literature is sorely lacking in two areas. Given the evidence of high psychosocial morbidity, research should explore interventions for individuals with diabetes and comorbid psychiatric diagnoses, e.g., depression, anxiety, and eating disorders. These patients are often excluded from intervention studies, when they need more, not less, help. Other populations that are often ignored include minorities and the elderly. The incidence of diabetes is high in minority groups, for example, the prevalence of diabetes among African-Americans is almost twice that of non-Hispanic white people (Diabetes Quick Stats—website of the American Diabetes Association—http://www.diabetes.org). Minority patients often have poorer BG control and a higher rate of complications and it is predicted that, for American Indians and Hispanics, diabetes may soon become the leading cause of death (Gilliland et al., 1997). Therefore, culturally sensitive and effective psychotherapies should be developed to address their needs (Brown, 1998). Similarly, psychotherapy with elderly patients is rarely reported, yet we know that they have unique needs and experience significant barriers to care (Moritz et al., 1994; Wandell and Tovi, 2000).
Pain is the most common reason that patients seek medical intervention, estimated to be the primary complaint for 80% of US medical visits (National Center for Health Statistics and Koch, 1986). Pain that is benign (i.e., not cancer related) and has persisted longer than 6 months was routinely labeled ‘chronic’ (Sternbach, 1974), but recent evidence that a 3-month cut-off predicts functional outcome has changed the definition (Turczyn, 1992). Chronic pain is associated with diseases of every organ system, traumatic injuries, and medical procedures, and has significant medical, emotional, and financial consequences. Chronic pain research focuses on back and neck pain, osteoarthritis, rheumatoid arthritis, headache, temporomandibular joint pain, fibromyalgia, and NCCP. However, most research studies focus on chronic back pain and arthritis due to the number of sufferers and high financial costs. For example, chronic back pain is estimated to cost $85 billion per year in the US (Cats-Baril and Frymoyer, 1991), while the direct and indirect costs of arthritis are estimated at $64.8 billion (Yelin and Callahan, 1995).
Psychological problems associated with chronic pain include depression, anxiety, anger, and social isolation (Gamsa, 1990; Polatin et al., 1993). In turn, psychosocial factors have been shown to affect pain perception, level of disability, emotional adaptation, and response to treatment (Himmelstein, 1995). Many individual and environmental factors have been found to affect outcome, e.g., family pain history (Gamsa and Vikis-Freibergs, 1991), childhood trauma history (Schofferman et al., 1993), litigation/compensation status (Tait et al., 1990), and work stress/satisfaction (Truchon and Fillion, 2000). The role of depression and anxiety has received the most attention.
Chronic pain and depression have been linked in numerous studies (Romano and Turner, 1985; Magni et al., 1990). Early work defined chronic pain as a ‘depressive equivalent’, i.e., an acceptable way for the individual to express emotional distress (Blumer and Heilbronn, 1982). However, research has not supported this idea. In one study of 200 chronic back pain patients screened for psychiatric disorder, researchers found that depression may have preceded the chronic back pain in 54% of depressed patients, but it was a consequence of pain in 46% of the sample (Polatin et al., 1993). In studies with arthritis patients, the rate of depression has also been found to be high (23% of rheumatoid arthritis patients, 10% of osteoarthritis patients) (Abdel-Nasser, 1998). Evidence is growing that depression relates to both disease activity and level of physical disability (Beckham et al., 1992; Parker et al., 1992), and is a significant risk for younger rheumatoid arthritis patients (Wright et al., 1998) and those who have lost their ability to engage in important activities (Katz and Yelin, 1995). Similarly, studies show that 30–50% of patients with fibromyalgia suffer from clinical depression (Hudson et al., 1985).
There are two major ways to understand the role that anxiety may play in pain perception and disability. The first, proposed by Turk (2002), extends the work on ‘anxiety-sensitivity’ (AS) to chronic pain patients. AS is defined as an individual's predisposition to fear the symptoms of anxiety, based on the belief that these symptoms will be harmful (Reiss and McNally, 1985). Turk proposes that patients with high anxiety sensitivity are especially vigilant to pain, and that this leads to higher levels of emotional arousal when even minor pain is perceived. Those with a heightened fear of pain interpret their pain symptoms as signs of serious underlying pathology, which contributes to greater fear. They then avoid activities that increase pain and its associated anxiety. This pain avoidance can, in turn, lead to greater fear, physical limitations, deconditioning, and impaired quality of life. This theory is supported by research that has shown that fear-avoidance beliefs are significant, and sometimes the best, predictors of higher pain level, greater functional limitation, poorer physical performance, and lower likelihood of return to work (Reiss and McNally, 1985; Waddell et al., 1993; Crombez et al., 1999a,b; Alobaidi, 2000).
Others have explored the role that nonspecific stress may play in chronic pain, especially for arthritis patients. Longitudinal studies have lent support to earlier cross-sectional research that suggested that stress and arthritis symptoms co-vary. In two longitudinal studies of arthritis patients, Zautra and colleagues found that symptomatic changes in pain and joint tenderness were predicted by level of interpersonal stress, although level of depression and marital support were also important (Zautra et al., 1999; Zautra and Smith, 2001). Some studies have suggested that stress plays a more significant role for those with rheumatoid arthritis than with osteoarthritis, but more work needs to be done (Zautra et al., 1994; Hirano et al., 2001).
This literature, coupled with evidence that different subgroups of pain patients vary on psychosocial factors (Turk and Rudy, 1990; Johansson and Lindberg, 2000) and demonstrate different behavioral responses to treatments (Rudy et al., 1995; Epker and Gatchel, 2000), has led to the recommendation that, in addition to a biomedical diagnosis, pain patients be assigned a psychosocial diagnosis (Turk and Rudy, 1990; Jamison et al., 1994).
Turk and Okifuji (2002) point to a growing emphasis on the cognitive processes that affect pain and disability, processes that focus on the pain. They highlight three areas that have received the greatest research support; patient appraisals, fears and pain self-management skills, all closely linked to the AS literature cited earlier.
Appraisal refers to the meaning and beliefs that the patient holds about the pain. If a patient believes that pain is a sign of serious pathology, he may avoid physical activities, including those necessary for adequate rehabilitation (Turk and Okifuji, 1996). Similarly, patients who have fears and anxieties about their pain are likely to avoid health-promoting behaviors (e.g., exercise, pleasurable activities), so that these fear avoidance beliefs promote worry (McCrackern and Gross, 1993), avoidance (Crombez et al., 1999a,b), and disability (Waddell et al., 1993). In addition, pain-related fear appears to enhance physiological arousal (Vlaeyen et al., 1995), including the reactivity of spinal musculature (Burns et al., 1997), and may thus directly contribute to increased pain severity.
A complementary construct is pain management self-efficacy, a term to describe the conviction that one can successfully perform skills that have been shown to decrease and control pain (Dolce et al., 1986b; Turk and Okifuji, 2002). Self-efficacy ratings have been associated with exercise and activity levels (Dolce et al., 1986a; Council et al., 1988), disability ratings (Lorig et al., 1989), pain perception (Keefe et al., 1997), and depression (Schiaffino and Revenson, 1995). Work that has shown that treatment outcomes can be predicted by changes in self-efficacy (Lorig et al., 1993; Keefe et al., 1999) has drawn increased attention to this construct that focuses on pain.
The processes involved in pain psychotherapy evolve from the understanding of pain-related psychopathology outlined above. Patients come into therapy looking for pain relief. They learn that other important outcomes of pain psychotherapy are improvements in function, mood, self-esteem, interpersonal relationships, and quality of life. The overall focus is to improve the individual's ability to cope with the pain and its consequences. This is accomplished by addressing the skills deficits and pain-related cognitions that interfere with positive coping.
Therapists attempt to intervene in several ways. They may try to change the individual's appraisal of the pain. This can be accomplished by encouraging active exercise despite moderate pain increases. Patients are also taught the principles of ‘pacing’ their activity level. Many try to ‘push through the pain’ by persisting in a strenuous, pain-aggravating task. This results in a cycle of pain–activity–increased pain–inactivity, and fosters frustration and fear. When patients pace their activities, i.e., do something for a shorter period, then rest, then return to the task, they learn that they can do more without ‘paying for it later’. They also learn that pain is not always a signal of serious pathology and increases in pain need not cause increased anxiety. This process helps patients become less fearful of the pain and of future reinjury, and enhances feelings of self-efficacy and control.
Pain management skills are also emphasized. This commonly involves relaxation training, possibly with EMG biofeedback. Most patients recognize that tension makes their pain worse, and that pain and its consequences increases tension. By learning to deeply relax they can resolve the tension-related component of their pain, and establish a sense of control over their pain. Additional stress management skills include identification of stressors and ways to manage life stress.
Other cognitive coping skills taught include attention-diversion, i.e., teaching patients to manage pain by distracting themselves from it, and assertiveness, i.e., teaching patients to assert their needs with family and friends. There is ample evidence that pain coping skills training leads to improved outcomes. For example, Lorig et al. (1993) and Keefe et al. (1999) have completed several studies of self-help interventions with arthritis patients and found that changes in self-efficacy relate to improved pain management outcomes. Parker et al. (1995) also found that stress management training with rheumatoid arthritis patients resulted in long-term improvements in pain, health, coping, and self-efficacy. Similar results have been obtained in coping skills training with patients who suffer from chronic low back pain (e.g., Flor et al., 1992; Hildebrant et al., 1997), headaches (Holroyd and Lipchik, 1999), temporomandibular joint pain (Dworkin et al., 1994), and with other pain groups.
A caveat: Although people in pain typically seek psychotherapy for pain management, one must remember that they, like other psychotherapy candidates, are dealing with other issues that may cause, or contribute to, their distress. They may be depressed because of marital conflict, or experiencing posttraumatic stress symptoms related to early childhood abuse. As a psychotherapist, one must attend to the unique issues that a patient presents and not limit the focus to only the most obvious one.
The US Congress has designated the period 2001–11 as ‘The Decade of Pain Control and Research’, attesting to the importance now placed on helping patients cope with pain and its consequences. Two reviews note many future research and practice directions (Keefe et al., 2002; Turk and Okifuji, 2002). One important area, among many others, involves establishing whether the early identification of depression and intensive depression treatment, will affect pain-related outcomes, including the pain itself, disability, or medical utilization. A second area would involve having researchers identify subgroups of patients based on their psychosocial and behavioral profiles and then develop specific, targeted psychosocial interventions for each subgroup CBT that would be more effective in reducing pain than a general approach (Turk and Okifuji, 2001).
This section will outline the main issues pertaining to psychotherapy with patients who have symptoms of IBS, chronic fatigue syndrome (CFS), and symptoms of NCCP.
There are numerous syndromal descriptions of what have become known as functional gastrointestinal disorders. The most commonly known is IBS that presents with persistent abdominal pain, altered bowel habits, and abdominal distension. It is believed to have point prevalence of 20% (Camilleri and Choi, 1997). It is believed that a general medical practitioner in the UK sees, on average, eight patients presenting with IBS each week. A proportion of female patients with these symptoms have experienced childhood sexual abuse. The evidence for the effectiveness of psychotherapies in treating the functional bowel disorders is equivocal. Talley et al. (1996) have highlighted various methodological weaknesses of work to evaluate psychotherapy in this area.
However, most guidance documents on the management of IBS recommend psychotherapy. Short-term dynamic therapy has been shown to be effective in reducing IBS symptoms and associated psychopathology (Svedlund et al., 1983; Guthrie et al., 1991). These therapies focus upon enabling patients to make links between physical symptom experiences and intrapsychic factors. Relaxation (Whorwell et al., 1984; Blanchard et al., 1993), cognitive therapy (Greene and Blanchard, 1994; Payne and Blanchard, 1995), have all demonstrated positive impacts on IBS symptoms, though there are some negative studies for CBT (Blanchard et al., 1992a,b). Cognitive therapeutic approaches to functional bowel disorders involve engagement of the patient in monitoring their gastrointestinal symptoms and, in doing so, considering both the potential links between physical and psychosocial factors and idiosyncratic beliefs about symptom presence and course. Case conceptualizations often make links between primary anxiogenic thoughts and beliefs (e.g., ‘I am going to collapse’) and secondary IBS-specific appraisals (e.g., ‘I am losing control of my bowels’) that further contribute to the process of anxiogenesis and the generation of symptom episodes. CBT is more likely to be successful when patients are able to make links between elements of their bowel symptom experiences and related thoughts, emotions, or behavioral responses. Psychotherapy has been shown to improve health-related quality of life at no additional cost (Creed et al., 2003). Svedlund (2002) suggests that given dynamic psychotherapy, hypnosis, CBT, and relaxation, have each resulted in successful outcomes, psychotherapists should use the technique with which they are most experienced.
CFS is a descriptive term for the experience of physical and mental fatigue that persists for at least 6 months and is associated with reductions in activity. Acceptance of the relevance of psychotherapeutic work is a particular challenge with CFS patients (Bentall et al., 2002). CFS patients may exhibit resistance to suggestions that consideration be given to psychosocial experiences, believing that this questions the legitimacy of their symptoms. The provision of an underlying rationale for psychotherapeutic work is particularly important. Prevailing opinion is that this should be based on a biopsychosocial formulation that acknowledges all of these influences on the experience of symptoms (Johnson, 1998).
Behavioral interventions focus upon enabling patients to sustain graded increases in their activity levels, including exercise, once some stability has been observed in daytime activity level. Cognitive interventions target beliefs that are related to symptom experiences (e.g., ‘I need to rest to conserve my energy before activity’). Cognitive-behavioral therapies incorporating these interventions have been demonstrated to be the most effective (Allen et al., 2002; Whiting et al., 2001).
Patients with NCCP constitute almost half of the new referrals to cardiology clinics (Bass and Mayou, 1995). CBT has been shown to be effective for this group of patients when implemented in both research and general hospital outpatient settings (Mayou and Sharpe, 1997). Almost all psychotherapy literature for NCCP is cognitive-behavioral in focus. Patients and therapist work to discover how patients’ life experiences, beliefs, thoughts, emotions, and behavior might be relevant to the understanding of why they experience cardiac symptoms in the absence of cardiac pathology (or in addition to or in excess of objective cardiac disease). This information is ultimately linked with the modification of cognitive-behavioral mediating factors. Patients with NCCP often report anxiogenic misinterpretations of physical sensations such as ‘I am having a heart attack’ or ‘I am going to collapse’. These cognitions may also be experienced in the form of images. Patients also report behaviors that they have developed in an attempt to manage their symptoms, including regular use of heart or blood pressure monitoring equipment, palpation of their chest wall, taking aspirin or limiting activity when they experience discomfort. These behaviors actually serve to exacerbate the problem as they reinforce the idea that the sensations are dangerous.
The most common strategies used in demonstrating cognitive-behavioral mediation of cardiac symptoms are those that help the patient develop a benign explanation for their chest pain: that rather being due to a potentially fatal cardiac problem, it may be due to hyperventilation, muscle tension, and catastrophic thinking. First the clinician introduces the idea of collaboratively working together to explore experiences within the session. The role of catastrophic thinking can be demonstrated by using flashcards containing words pertaining to their unique anxiogenic thoughts (collapse, heart attack, pain, crushing). Patients are encouraged to read these words and notice any physical sensations that they experience. Patients that experience symptoms of anxious arousal can reflect upon the way in which focusing upon salient words has resulted in their experiencing autonomic symptoms. Patients are then encouraged to list the sensations that they attribute to cardiac symptoms. This is then used to compare the sensations that they experience during the session as a result of behavioral or cognitive manipulation (though patients are not told that this is going to happen). Situations that have been avoided because of previously held beliefs can be confronted using the techniques of graded exposure and/or within the framework of a behavioral experiment. Behaviors that have become habitual because of beliefs about increased risk of heart problems are then more easily extinguished. Anxiogenic thoughts can be evaluated as patients become increasingly aware that their problems are best construed as anxiety symptoms and not cardiac symptoms.
The emergence of data to support psychotherapy for common functional disorders results in a challenge and service planners and for clinicians who need to help patients to accept psychotherapy as a legitimate treatment and as one that does not minimize their suffering. It has been suggested that new conceptual frameworks and greater integration of psychotherapeutic treatments within medicine might facilitate greater integration with medical practice and acceptability to people who experience these symptoms (Salmon, 2000; Sharpe and Carson, 2001; De Gucht and Fischler, 2002).
Patients who have experienced symptoms of a neurological disorder often encounter problems with anxiety and fears that can be traced to the sudden onset of the condition and related concerns of experiencing a similar future episode (Newson-Davis et al., 1998). Patients may also become preoccupied that they will die and/or suffer further brain damage. This is most clearly appreciated in considering the clinical presentation of epilepsy or a cerebrovascular accident. There are also neurological disorders that have a more insidious onset (such as multiple sclerosis and motor neuron disease) and are more gradually progressive. These present with a different range of concerns, relating more to incapacity and eventual slow death. There are few clinical practice guidelines on psychotherapy with this group of patients. Most interventions focus on psychoeducation (Korner-Bitensky et al., 1998).
Clinicians treating patients who experience such disorders need to take account of the direct influence of neurological dysfunction on psychological functioning, such as in the case of emotional disinhibition or impaired intellectual functioning that can occur following a cerebrovascular event. Although there have been attempts to influence the nature and severity of neurological events such as seizures, research to examine this has been of poor quality and has generally concluded that there is no effect of psychotherapeutic techniques on symptom occurrence (Ramaratnam et al., 2003). There is some evidence to suggest that positive benefits are more likely to be found, as would be expected, on mood and quality of life.
Although there is a paucity of research on psychotherapy and neurological disorders there has been some recent work to examine psychotherapeutic work with families. Glass et al. (2000) have been developing a therapeutic protocol for families one of whose members has suffered a stroke. Their intervention is based on a family systems perspective with a specific emphasis on addressing the needs within the family to accommodate care giving and support for the neurologically impaired family member. They make specific attempts to encompass professional carers within an expanded systemic conceptualization that they refer to as the ‘problem defined system’. This intervention aims to increase patient efficacy and control; promote social support; reduce stress and maximize system cohesion; and enhance problem-solving effectiveness. The implementation of psychotherapeutic modalities covered in this chapter may be difficult with a stroke patient if the neurological disorder has resulted in neuropsychological problems such as aphasia. Therapists may have to adapt standard components of therapy and enable people to express themselves using other means (e.g., writing). Laatsch (1999) has developed this approach in her work to integrate cognitive rehabilitation therapy techniques in psychotherapy with patients experiencing neuropsychological impairment. This approach aims to blend psychotherapy and cognitive retraining in patients who have experienced a stroke or sustained a head injury.
The recognition that physical illness can result in the development of psychological disorder has led to developments in the application and study of psychotherapy for the medically ill. Although most therapeutic modalities have been developed for application with one form of medical illness or another, the predominant focus within the literature has been on cognitive-behaviorally based therapies with the most common presenting physical disorders such as cancer, chronic pain, and diabetes. Group-based supportive therapy and group psychotherapies have been studied mostly within oncology settings and found to be particularly suited to the needs of people facing feelings and issues associated with death and dying. Work in this area has also been applied to functional somatic syndromes such as IBS and although most evidence comes from cognitive-behavioral approaches, psychodynamic therapy demonstrates considerable promise in the management of functional gastrointestinal disorders. Many therapists working with the medically ill elect to adopt a multimodal approach to psychotherapy—choosing to tailor their interventions to the particular physical disorder, psychosocial morbidity, and presenting psychological problems that are presented. Further research in this area is now required to determine the active ingredients of effective psychotherapy for the medically ill and to refine the evidence base for psychodynamic and family systems therapies in physically ill adults.
This chapter is dedicated to Andrew John McPhail (1967–2003). The authors wish to thank Audrey McDonald for her assistance with preparation and to Angela Hissett, Medical Library, Ailsa Hospital for her assistance in identifying literature referenced in the chapter.