Sickle Cell Disease as an Example - American Psychological ...

Culturally Sensitive Family Interventions for Chronically III Youth: Sickle Cell Disease as an Example*

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NADINE J. KASLOW, Ph.D.f FONTINA BROWN*

Ethnicity and socioeconomic status (SES) impact therapists' and family members' beliefs and behaviors regarding illness and health. For chronically ill youth, however, the need to conduct culturally sensitive family interventions that consider the disease parameters, the child and family's racial group and SES background, and the sociodemographics of the family therapist, has been undervalued. This article offers guiding principles for family systems interventions with pediatric sickle cell disease (SCD). This is followed by a review of the characteristics of low-income African American families, and a brief discussion of family therapy as applied to work with these families. Finally, a culturally sensitive family systems intervention for pediatric SCD is presented, with illustrative examples to highlight key points. This psychoeducationally oriented intervention can be adapted and * This work was supported in part by grant from the National Institute of Health (1-P60-HL48482) awarded to James Eckman, M.D. (P.I.), Georgia Comprehensive Sickle Cell Center, for the program project: "Psychosocial interventions for pediatric SCD" (P.I., Nadine J. Kaslow, Ph.D.). t Associate Professor, Department of Psychiatry, Emory University School of Medicine, Grady Health System, 80 Butler Street, SE, Atlanta GA 30335. X Graduate student, George State University, Atlanta GA.

modified for work with youth with a variety of medical illnesses. Fam SystMed 13:201-213,1995

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race, religion, and socioeconomic status (SES) impact therapists' and family members' beliefs and behaviors regarding illness and health. Working with low-income African American youth in whom sickle cell disease (SCD) has been diagnosed, our work is influenced by our sociodemographic backgrounds that differentiate us from the families with whom we work.1 In devising, implementing, and evaluating a family intervention for pediatric SCD at Emory University School of Medicine, Georgia Comprehensive Sickle Cell Center at Grady Health System, we have struggled to develop a treatment sensitive to the backgrounds of the families, therapists, and health care team. This article provides guiding principles for family systems interventions with THNICITY,

1 The first author (NK) was raised in an intact, upper-middle-class, well-educated Caucasian, Jewish family in the Northeast. The second author (FB) grew up in a lower-middle-class, African American remarried family on the West Coast, and was the first family member to complete college and enter graduate school.

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pediatric SCD, addresses the medical, psychological, and family sequelae of pediatric SCD, reviews the characteristics of low-SES African American families, and discusses family therapy as applied to work with such families. A culturally sensitive, psychoeducationally oriented family intervention for pediatric SCD is presented, with examples highlighting key points. This model can be adapted for various pediatric illnesses, with modifications based upon onset, course, phase, level of incapacitation, and prognosis of the illness, and the family's functioning (23). Guiding Principles

To intervene in a family with an SCD child,2 the therapist must be: 1) familiar with SCD, including genetics, disease process, physical symptoms, and interventions; 2) aware of the impact of SCD on the child's psychological functioning; 3) knowledgeable about the social context within which the SCD youth is embedded; 4) informed about the characteristics of African American families; and 5) trained in adapting family approaches to African American families (2, 11, 18). The following sections discuss these issues. SICKLE CELL DISEASE (SCD)

Family interventions with pediatric patients require knowledge of the child's disease. SCD (HbSS, HbSC, HbS betathalassemia), the most common genetic illness, is a blood disorder that affects one in every 400-500 African American babies (see 7). The life expectancy for individuals with SCD has improved since the 1960s, with 50% of patients surviving beyond the fifth decade (21). SCD, the result of a defect in the autosomal recessive beta2 Due to space considerations, children and adolescents in whom SCD has been diagnosed will be referred to as SCD youth. This is not intended to imply that persons with SCD constitute a homogeneous group, nor to suggest that they are a disease.

globin gene, causes normally round red blood cells to become sickle (crescent) shaped. Due to their abnormal shape, the sickled cells do not flow readily through the blood vessels and tangle together, blocking circulation and delivery of oxygen to organ tissues and aerobic muscles. Physical symptoms, which persist throughout the life-span, vary in frequency, intensity, and duration for each person. The most common complaint is extreme pain in the abdomen, back, extremities, or chest, accompanied by swelling and fatigue (that is, vaso-occlusive episode or sickle cell crisis). Other complications may include anemia, pneumococcal infections, dehydration, cerebral vascular accidents (CVA), bone infections, jaundice, delayed growth, and premature death. Although there is no cure for the disease, allogenic bone marrow transplantation, using an HLA-matched full sibling with normal hemoglobin or sickle cell trait is an experimental treatment that may offer a cure for some people. A multidisciplinary treatment, that includes a psychosocial component, has been recommended (see 24, 31). Psychosocial treatment often combines biofeedback, self-hypnosis, relaxation therapy, and cognitive-behavioral interventions for managing pain and developing coping strategies. Additional adjunctive treatments include support groups, self-help groups, genetic counseling, nutritional education, and physical therapy. For a review of these, see Vichinsky and Lubin (31). Although family counseling has been noted as a useful adjunct (10), only recently has family intervention been viewed as crucial in treating SCD youth (12, 18). To date, little systematic attention has been directed toward assessing the efficacy of these psychosocial interventions. The research we are conducting at the Georgia Comprehensive Sickle Cell Center is one of the first efforts to assess the efficacy of an

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intervention for enhancing coping in SCD youth and their families.

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demands on the family's ability to cope with stress (18). Similar to other chronic illnesses, SCD often is associated with financial strain, restrictions on family Psychological Adjustment Pediatric psychology interventions from members' social lives, neglect of the nondisa family systems perspective require consid- eased children, and disruption in routines eration of the psychological adjustment of (5,18). Due to the hereditary nature of the the individual child patient. SCD youth are disorder, parents often feel to blame for more vulnerable than their healthy peers their child's illness (19). The more guilt to psychological problems (depression, anxi- and responsibility parents experience reety, attention deficit/hyperactivity disor- garding their child's disease, the less they der), adjustment and interpersonal difficul- indicate that the child's condition negaties, maladaptive cognitions and coping tively affects the family (5). Compared to a demographically matched strategies, low self-esteem, academic difficulties, and neurocognitive impairments group, SCD individuals more often reside (for a review, see 3, 28). These difficulties in single-parent families, with female heads appear stable over time (29), and are of household (7). Single parents rate the affected by age, sex, SES, disease param- SCD child's behavior and the parent-child eters, child and parent pain-coping strate- relationship more negatively than do pargies, social support, family structure, and ents from intact families (6). The presence maternal adjustment (3, 4, 8, 13, 27). Not or absence of a nuclear family structure, all studies have found impaired adjust- however, may not indicate adequately the ment or coping difficulties in SCD youth functioning of African American families compared to demographically matched con- because one also has to take into account trols (1,13). the strong, extended-family networks that In sum, the data suggest that while some characterize much of the African AmeriSCD youth evidence psychological difficul- can community (33). Consistent with this, ties, others are well adjusted. This within- single mothers who are the primary caregroup variability may be attributable in givers for SCD children receive material part to family factors and SES. Thus, and emotional support from their expsychological difficulties resulting from tended family, and thus may not differ physical complications of the disease may from married women in the amount of be mediated by family systems variables primary responsibility they assume for (19). their child (25). Compared to control families, families Family Functioning with an SCD child have more conflict and There is a dearth of research on the lower levels of family organization and impact of SCD on the family. While clinical affiliation in the parental dyad—patterns narratives and semistructured interview suggestive of dysfunction (5, 6). However, data offer a rich portrayal of the families, on clinical and semistructured interviews, the unsystematic collection and subjective most parents report good parent-child and nature of the data raise questions about family relations and deny that the child's the reliability and generalizability of the illness negatively impacted the marriage findings. Thus, this section discusses the (12, 19). This apparent contradiction may bespeak families' reluctance to blame the empirical findings. Since SCD is life-long, life-threatening, child's illness for their marital problems. and unpredictable, it places persistent Data regarding the association between Fam. Syst. Med., Vol. 13, Summer, 1995


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maternal adjustment and child psychological functioning are contradictory. Although one study found that mothers of SCD children do not report symptoms of psychopathology (4), other research found that 36% of mothers of SCD youth endorse levels of psychological symptoms consistent with poor adjustment. Poor maternal adjustment appears related to high stress levels and family control, palliative coping methods, and limited family support (27). Regardless of whether or not mothers of SCD youth evidence psychological symptomatology, these women do report high levels of stress associated with being informed about their child's diagnosis and caring for their SCD child (22). Positive reappraisal, seeking social support, and planful problem solving are the coping strategies most often used by mothers to cope effectively with their child's SCD (22). Some research reveals that healthy siblings have more depression and coping problems than their SCD siblings (30). There are anecdotal reports that the siblings are more irritable, aggressive, and socially isolated (10). However, researchers using more psychometrically sound measures report that SCD children have more psychological symptoms, negative self-perceptions, and maladaptive cognitions than their nondiseased siblings (4). Due to the small number of studies and the lack of methodological rigor, the findings are preliminary. Until more studies compare families of SCD youth to demographically matched groups of medically ill and healthy children, it is impossible to determine if the findings are due to the specific illness and/or sociodemographic variables. Our research is conducted primarily with low-income African American families. Thus, the design, conduct, and evaluation of our interventions entail awareness of the characteristics of African American families, with attention to low-SES fami-

lies. A summary of the key work is offered below. For thorough discussions, see BoydFranklin (3), McAdoo (14), McGoldrick and colleagues (16), Staples and Johnson (26), and Wilson and Tolson (33). The emphasis in this section is not meant to imply that the preponderance of families with an SCD child are low income, but rather reflects the families with whom we work primarily. African American Families

Among African Americans, family refers to blood-related and nonblood relatives, the majority of whom live in close proximity. African American families, regardless of social class, share many experiences because of their need to cope with a history of racism and continued discrimination. Most families have extended-family networks and place a high premium on family. These kinship bonds promote the survival of the community and provide validation for individuals within the community. Role flexibility and role sharing are the norm. This is typical of three-generation households in which adults of different generations share executive functions. A spiritual orientation, the value placed on independence, and an emphasis on doing rather than feeling, are common. Low SES Low-SES families, regardless of ethnicity, are strained by their socioeconomic conditions and limited resources, which often impede the family's ability to cope effectively, and may impair the children's development. In low-income African American families, these conditions often are accompanied by high rates of teenage maternity and single-mother families dependent on welfare (33). Childrearing for these families is particularly complex: children need to be socialized if they are to develop a positive, racial self-esteem, learn to live effectively in two cultures, and cope

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with racial oppression. Yet such families must accomplish these goals with limited resources. To complicate matters further, economic hardship is related to a diminished capacity for nurturant and consistent parenting (17). Many low-SES African American children do not live with their biological fathers. This may be partly due to the higher value that many African American women place on being mothers rather than partners. As a consequence of high rates of father absence, combined with mothers' active roles in the work force and the community, children often assume the parental role. Assumption of this role is accompanied by a high level of family responsibilities and low level of resources. These stressors, combined with high rates of child abuse and parental substance abuse and incarceration, often necessitate informal adoption of children by extended family and nonblood relatives.

moral values, optimism and determination, and resilient children. In the initial phases of treatment, the evaluation (including genogram work) should be approached slowly and carefully. The use of paradoxical techniques and direct confrontation of family secrets should be limited (2). Thus, more active, educational, and problemsolving approaches may be most efficacious in the early phases of the intervention, as these approaches help families define and prioritize their difficulties, and direct their attentions toward positive change (2). Additionally, time-limited, psychoeducational approaches have been found to be helpful and empowering to families facing chronic physical disorders: the information provided helps the family develop a sense of mastery, control, and power (9). At later phases of the treatment, when a therapeutic alliance has been formed and the family feels empowered, other treatment approaches may be incorporated (2).

Family Therapy A major goal in developing our intervention for pediatric SCD was to insure that the treatment incorporated information specific to therapy with African American families. Thus, we will first discuss the attitudes of African American families, particularly low-income families, toward therapeutic treatment. Historically, African Americans have sought support and guidance from relatives, friends, and community members (for example, the religious community). Seeking psychotherapy is the exception, and many African Americans distrust and/or lack of accurate information about psychological services (2). The therapist must use a culturally informed perspective to engage these families in therapy. For example, effective interventions must attend to, acknowledge, and build upon the strengths of the family, including kinship network, work and achievement orientations, adaptability of roles, religious and

THE SCD PROJECT

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The family systems intervention described below, which is part of a clinical research project, is a developmentally and culturally sensitive, manualized treatment that is individualized for each child and family. The use of brief, manualized treatments is consistent with the emphasis in the field on short-term, empirically validated treatment approaches. For the purpose of this clinical research project, each intervention considers the unique needs and competencies of the child and family. It uses information gleaned from the assessment, which includes measures of disease/disability parameters, SCD knowledge, psychological symptoms, cognitive functioning, stress-processing, self-esteem and racial identity, and family functioning and resources. Parallel constructs are assessed in other family members. When possible, culturally sensitive measures are used. Our psychoeducationally oriented, fam-


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themselves with medical professionals in order to insure that their child receives optimal care. Our culturally sensitive, psychoeducational approach facilitates the formation of a solid working alliance, and yields positive therapeutic change by enabling the family to interact more adaptively, and providing them with the requisite knowledge and skills to cope with the illness and medical community. We use a multisystems approach because effective intervention must occur at multiple levels, including the child, the family, the extended family, church and community networks, and health care systems (3). This article, however, focuses only on work with the child, family, and extended family. Given the economic hardships encountered by many families with whom we work, the child's illness and psychological functioning are secondary to concerns about basic necessities (for example, food, shelter, clothing, transportation). This is different from many families with a medically ill child for whom the child's condition and care are the family's primary focus. The therapist must appreciate that the family's limited attention to the ill child may not indicate a lack of concern, but, rather, may bespeak the family's more fundamental struggles. Working with impoverished families with a medically ill child, the first goal often is to help the family obtain the necessary resources for adequate survival. This must be accomplished prior to focusing directly on helpEmpowerment, in which a clinician reing the child and family cope more effecstructures the family system to foster the tively with the child's disease. We often adaptive use of power, may be the sine qua underscore to the treatment team that the non for therapeutic change in African American families (2). When working with family's poor treatment adherence may be African American families with a medically out of necessity, rather than a reflection of ill child, educating them about the illness resistance. In turn, the treatment team and teaching them communication and develops creative strategies to enable the problem-solving skills that are effective in family to attend to the child's basic medical negotiating the medical care system em- needs. For example, as part of the planned powers them, enabling them to assert intervention, families receive points for

ily therapy intervention incorporates a risk-resistance-adaptation perspective (32), and the transactional stress and coping model (27, 28). According to the riskresistance-adaptation model, a chronically ill child's adaptation (psychiatric presentation, social functioning, physical health) is mediated by the interaction of risk (disease/ disability parameters, functional independence, stressors) and resistance factors (child variables, socioecological factors, stress processing). According to the transactional stress and coping model, the illness-outcome association (correlation between illness parameters and demographic factors, and child and maternal adjustment to a child's medical condition) is mediated by child and maternal processes (cognitive processes, methods of coping) and family functioning. Using these models as a foundation, the intervention aims to enhance disease management and coping, as well as to facilitate the use of effective strategies for preventing and/or minimizing disease complications. This focus on enhancing coping is consistent with recommended family treatments with minorities in which bolstering the competencies of each family is of priority. Attention to families' strengths enables us to emphasize adaptive family features and develop culturally relativistic views regarding the families' functioning. This emphasis on family health and a nondeficit model empowers families and enhances their self-esteem.


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appropriate involvement, which then may be exchanged for rewards such as items that help the family address their basic needs (for example, food coupons, school supplies). For most families, 6-12 sessions are appropriate. This enables the therapist to provide information, resources, and support without overly taxing the family. Families may be engaged in treatment when the child experiences an acute exacerbation of the disease, or when a child and/or family followed for routine medical care exhibit difficulties, for example, managing the disease or other stresses in a way that negatively affects the disease process. The frequency and duration of sessions depends on the intensity of the situation. Inclusion criteria for the intervention include child and/or family adjustment problems, or lack of knowledge about SCD, based upon findings from the assessment tools. Ideally, session membership should include all persons involved in the family and the care of the child, as a supportive social network is associated with positive family functioning and disease adjustment (5, 12). In reality, however, the most common session membership is the primary caretaker(s) and index child. Given the role flexibility characteristic of African American families, different caretakers may attend each session. Other children living with the patient and siblings are encouraged to attend when this simplifies the family's involvement (no need for a babysitter); nonattendance is also accepted when this would avoid complications such as lack of money to transport all the children. For purposes of simplicity, we present a 6-session format held every other week, which may be modified according to the family's needs. These sessions are conducted by graduate students trained in this intervention approach and supervised Fam. Syst. Med., Vol. 13, Summer, 1995

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by the first author. To date, only African American therapists have been used. Session 1. Education: Given that the more family members are educated about the syndrome, the more effectively they cope with the child's disease (5), it is essential that education be provided and understood. This session provides education about the syndrome (genetics, biology, physical sequelae) in an age-appropriate and engaging manner via simple didactic presentation, pamphlets, and visual aids (posters illustrate the sickling of the cells and the difficulty that sickle cells have flowing through the body). The presentation varies according to the education level of the adults and the youth's developmental stage and cognitive functioning. Education also is provided about the family therapy, and risk and resistance factors. The purpose, potential value, and structure of family therapy is discussed since this treatment is unfamiliar to many families. Risk factors are defined as things that make it more difficult to cope, and resistance factors are defined as things that help you cope better. The family is introduced to three characters (Too Little Linda/Larry, Alright Angela/Anthony, Too Much Tasha/Terrance) with whom they identify during the intervention. These characters illustrate the importance of the child engaging in ageappropriate social and educational activities and underscore the importance of balancing quality of life with medical management. In each session, the family rates the child on the too little—too much continuum, indicating the degree to which the child's functioning is adaptive and age-appropriate, taking into account the disease process. This rating offers an easy way to communicate about the child's between-session functioning. K, a 7-year-old boy, never played with other children because his mother feared that activ-


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ity would precipitate a vaso-occlusive episode. K complied with her expectation but responded by talking in baby talk. When hospitalized for pain, he did virtually nothing (Too Little Larry) in his mother's presence. When encouraged by staff or his father to take an active role in his pain management, he did so (Alright Anthony). In the intervention, the family began to support K's age-appropriate assumption of responsibilities and encourage his involvement in recreational activities. This was accomplished via the characters to normalize a middle-of-the-road stance. Also, the therapist encouraged increased father-son involvement in activities and supported the couple's socialization, despite K's complaints of increased pain when they did so. Recommended homework assignments for Session 1 are to read a pamphlet about SCD and monitor fluid intake: it is important for SCD youth to consume significant quantities of fluid. The monitoring of fluid intake is assigned as homework for every session. Some families comply with this and subsequent assignments; others are too overwhelmed or disorganized to do so. Given this significant variability, we rely mostly on the on-site intervention. Homework, which serves as a supplement to the intervention, is reviewed each session, and points toward a reward are earned for its completion. In a family with a mentally retarded mother and her 11-year-old SCD child in a parental role, homework assignments are not completed because the child does not receive any help. The therapist, therefore, helps with homework at the beginning of the session to enable the child to learn the material and qualify for points. The therapist also worked with the school about a plan for the child to receive help with schoolwork, since the child often missed school because of transfusions. Providing education recognizes the biological dimension of the disease, an important component of family systems medicine interventions (15). This education

may be most effective in the context of the family's "illness story," particularly for those families who have difficulty being receptive to information until their illness story is understood empathically. Other low-SES African American families who mistrust the medical system may be reluctant in early sessions to divulge their version of their child's disease. For them, education should be provided sensitively, using information the therapist has about the family. The illness stories of many families in the pediatric SCD intervention blame absent people. Single parents often blame the child's other biological parent (for example, whether or not the father's identity is known) and extended family members for the child's medical condition. Others state that the medical professionals misdiagnosed their children, wanting to use them as "guinea pigs." Although the work aims to help families assess more realistically the child's condition, the therapist must meet families where they are at, and then gradually and respectfully help them to arrive at a more accurate view. Session 2. Prevention: This session provides additional education about SCD and teaches preventive health care strategies that can serve as resistance factors. Attention is paid to warning signs and steps to take when these occur. Many families are unaware of the early signs of complications and/or fail to exercise appropriate parental responsibility, partly because they feel too helpless or demoralized to seek medical attention. Given that families often feel disempowered within the medical system and vis-a-vis the child's illness, increased awareness of disease complications and treatment options may bolster a family's confidence in communicating with the medical team. This empowerment may be effective for families that feel oppressed by their child's illness and the dominant culture. Efforts also are made to help the medical team be more receptive to families


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and to communicate with them in an effective manner. Session 2 offers a schema to help the family learn strategies that will increase the child's resistance to medical problems. The acronym FARMS is provided to underscore the need to receive adequate Food, Air, Rest, and Medicine, and to avoid problematic Situations. The following vignette highlights each element of the FARMS acronym. T, a 14-year-old girl with a recent CVA, suddenly evidenced left-sided paralysis and "appeared to be staring off in space." Because T did not want to go to the hospital, her mother waited until the next day to seek medical attention, despite her awareness that T had had a stroke. In response to this incident, intervention was requested to provide education, support the mother's authority, and help the mother, who was overwhelmed by the demands of poverty and two SCD children, to cope effectively when a crisis occurred. During the intervention, the mother revealed that she feared she would not be believed about her daughter's deterioration and thus was reluctant to bring her to the hospital and risk feeling invalidated. She wanted to learn to express her perspective and insure that she was believed. In addition to helping the family members learn when and how to seek appropriate intervention, they also were educated about the importance of T's eating healthy foods and drinking eight glasses of water each day, of resting when needed, and of medication compliance.

Another component of Session 2 is the playing of a "Wheel of Fortune" game regarding SCD facts. The family's playing of the game provides SCD education and interactional data that can guide the therapist's subsequent interventions. For example, in many families, a weak generational hierarchy is evidenced during this game: caretakers act like the children, angry if they are wrong, cheating if they do not know the answers, and being competiFam. Syst. Med., Vol. 13, Summer, 1995

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tive rather than supportive of the children. Another family pattern noted during the "Wheel of Fortune" game relates to the parents' lack of awareness of the child's SCD knowledge. In some families, low levels of proximity emerge because of limited sharing among family members about SCD. In other families, the adults assume that, since they know information, the child also has the knowledge, even if it never was discussed. The family patterns noted during this session inform the way the therapist helps the family to develop a stronger, more adaptive, generational hierarchy. Homework includes preparing for a medical emergency by posting relevant information and completing an age-appropriate "Word Search Puzzle" of key words in order to reinforce the education received during the sessions. Based on information revealed about family patterns of helping, the manner in which family members are asked to help the SCD youth (s) complete the homework varies. For enmeshed families, the child is encouraged to do the puzzle alone; for disengaged families, active family involvement is recommended. Session 3. Stress processing and coping: To enhance the child's and family's stressprocessing and coping, this session includes pain management techniques (deep breathing, relaxation training, imagery). Based on the family's structural characteristics, the manner in which each member is involved in this process is decided. In families where all attention is focused on the SCD child, all members are encouraged to participate in the relaxation experiences and focus on themselves. In families where limited caretaking of the SCD child is done, family members are taught to coach the child. Attention also is paid to helping family members develop active, problemfocused, coping strategies. The need for all family members to take care of themselves as well as to nurture others, is highlighted.


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During the first two sessions, B came with his maternal grandmother, who is his stable caretaker because his mother is cocaine/crackdependent. The grandmother had not wanted to bring B's four younger siblings, all under age 5, indicating that it would be too difficult to manage them all. Unable to find adequate childcare, and fearful that Child Protective Services would remove the children if they were home alone, she brought them to subsequent sessions. Despite the therapist's efforts to engage these youngsters in therapy, the grandmother expected them to sit quietly. This seemingly controlling and nonnurturing caretaking style was addressed via the discussion of effective stress-processing strategies. The therapist used activities to involve the children in therapy, and helped the grandmother use problem-focused strategies to manage them, interrupting the grandmother's emotion-focused strategies that included authoritarian control. Thus, both education and structural interventions were provided. Session 4. Enhancing intrapersonal variables: This session encourages family members to articulate and share with one another their feelings, and elicits strategies for adaptive, causal explanations, enhanced self-esteem, and improved communication. Strengthening these intrapersonal variables decreases the child's vulnerability to psychological maladjustment and disease-related difficulties that are controllable. Relevant homework is suggested. Given that it is normative in the African American community not to express feelings directly, many of these families have never shared their feelings about the SCD. However, in the context of a supportive relationship in which expression of feelings is valued, many families choose to share painful emotions (for example, anger, despair, fear) during the session. The therapist respects the decision of those families or individual members who choose not to share feelings during the session. The mother of S, a 9-year-old boy, when meeting alone with the therapist, spoke for

the first time about her grief when she learned that her infant had SCD. She noted that her child's identity since birth included a sense of his being defective and vulnerable. She remarked that because SCD is most commonly diagnosed among African Americans, it made her feel ashamed of the family's racial background. When the mother learned that her son had SCD, she approached his father, who acknowledged having the sickle cell trait. She continues to be angry at his father, yet also blames herself for not having this information, stating she may have had an abortion if she had known her son might have SCD. The mother's feelings were validated, and she was helped to express and modulate her negative feelings and develop cognitive strategies to minimize the responsibility she took for negative events (adaptive and realistic causal attributions). All family members began to learn to make adaptive causal attributions via the "Causes Comic Book." The mother acknowledged that her son had tried to express his feelings about SCD in the past, but she had not felt able to help him. He said that he had discussed his reactions with his grandmother and a friend, underscoring the importance of the kinship network. Our suggestion that involving the support system would be a way to increase family proximity was experienced as supportive by each family member. Session 5. Examining socioecological resistance factors—Peer and family relationships: Since supportive peer and family relationships are key resistance factors, this session helps the family understand the association between good family relations and effective coping with SCD, addresses age-appropriate separation-individuation, and presents ways to enhance friendship patterns and the support network. This is accomplished via role plays. The family plans a family day, and implementing these plans is the homework assignment. This involves negotiation and articulation of roles and rules. F, a 10-year-old girl who lives with her mother, sister, and aunt, has never discussed


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her SCD with a nonfamily member. The family spoke of F's unwillingness to discuss her disease with peers, even in response to their inquiries. F was aware that her "secret" interfered with developing friendships, but had refused to change her behavior. The therapist facilitated a discussion that revealed a family pattern of not sharing "secrets" with nonfamily members. When F's behavior was reframed in light of this pattern, she experienced relief. She returned to the next session with a neighbor child with whom she had just shared her secret. The portion of this session geared toward the family's social support network is based on an understanding of the value of a multisystems perspective. The therapist often empowers caretakers by facilitating their involvement with available social service agencies. This enables children to see their caretakers negotiate medically related stresses, financial stresses, daily hassles, and major life events, and also helps them to cope more effectively with their support system. Session 6. Review, treatment termination, and followup plans: This session reviews information provided in prior sessions, evaluates the family's progress, trouble-shoots about problem areas, and underscores the importance of minimizing risk factors and enhancing resistance factors to achieve and sustain optimal adaptation and adjustment. As is true throughout the intervention, family strengths are highlighted and ways to capitalize on positive qualities are emphasized. Posttherapy assessment plans are made, and referrals for further treatment, if indicated, are provided. A "soft therapy termination" ensues, with an open-door policy stated. One isolated family with little social support became very attached to the therapist, and had difficulty attending the last session. The therapist, realizing that they had adopted her as a nonblood-relative, indicated that continFam. Syst. Med., Vol. 13, Summer, 1995

/ 211 ued contact could occur. Since the therapist was the first person with whom the mother had discussed her feelings about her child's SCD, she felt unable to lose the therapist as a contact. For this family, the intervention had been helpful but not sufficient in addressing the family's psychological needs. Until these were addressed more fully, the child's vulnerability to SCD-related medical difficulties was high. CONCLUDING COMMENTS

To date, the families who have participated in the intervention report that they enjoy the treatment, especially the games and activities. They also note that it has been helpful to have someone to talk to who is familiar with SCD, and parents appreciate having someone to help them address the child's questions and concerns. Further, the families indicated that they feel more competent to handle the child's difficulties and the medical care system. Because this report is based on an early phase of our clinical research project, it is premature to comment on the efficacy of the intervention. However, our clinical impressions are that the child and parents evidence improvements in their selfesteem, there is better family communication, and the family's ability to cope with SCD and its myriad complications is enhanced. Clinical Implications

To conduct culturally sensitive family interventions with medically ill children, the therapist must have a working knowledge of the child's medical condition and the sociocultural context in which the family is embedded, and must attend to similarities and differences between therapist's and family's cultural norms and values regarding illness and health, helpseeking behavior, and medical care. The therapist also needs to communicate with family members about their belief systems; failure to do so is disrespectful and


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impairs the development of trust (23). It behooves the therapist to develop multicultural competencies, which require consideration of the cultural predispositions of each person involved in the intervention, awareness of one's own ethnic identity and the ethnic identity of all family members, as well as sensitivity to the dynamics associated with same- and cross-racial counseling (see 11, 20). In addition, the models for therapeutic intervention must be adapted to the specific characteristics of the family's cultural and SES background. Without attending to these issues, it is difficult to form a working alliance, which is essential if the family is to receive and accept appropriate care. Further, neglect of these issues may result in the provision of inadequate care. Thoughtful consideration of multicultural/SES factors will enable the therapist to acknowledge that the child and family have the ultimate responsibility for medical decision making (23), and, therefore, to feel comfortable with the development of an optimally therapeutic, patient-family-medical system collaboration.

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