| 1. Family-based (Celano & Kaslow, 2000; Kaslow et al., 2000; Stevenson & Renard, 1993: Sue & Sue, 2003) |
Emphasize role of family. Open to multiple members of extended family (related or not related) taking part. Include family in assessment to elicit other viewpoint.
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Adolescent designated support person (family member or friend) attends sessions and works with the adolescent to implement pain management strategies. Allow for multiple family members to be present and to learn the skills being taught. Reinforce role of family in adolescent’s disease management. Collaborate with adolescent and support person to develop realistic and feasible pain coping strategies.
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| 2. Emphasize empowerment (Kaslow & Brown, 1995; Stevenson & Renard, 1993; Yoos, Kitzman, Olds, & Overacker, 1995) |
Acknowledge family’s social, emotional, and cultural strengths. Encourage and teach advocacy for self. Support ethnic/racial pride and spirituality.
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Train adolescent and support person to be in control of managing pain. Assess for and reinforce adaptive coping skills and resources for dealing with SCD and related pain. Self-statements may be of African American perspective and may include ethnic/racial pride or relate to their faith.
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| 3. Recognize stress related to being of minority status (Clark, Anderson, Clark, & Williams, 1999; Sue & Sue, 2003) |
Understand that African American minority status: (a) results in chronic stress given discrimination and lower status in society, (b) relates to health disparities, (c) may impact how individuals and institutions (e.g., government, healthcare system, school) treat individuals.
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Acknowledge/validate stressors related to minority status, including those that may contribute to pain or to perceived lack of awareness or neglect by medical system or school system. Allow time and maintain flexibility to problem solve related stressors.
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| 4. Recognize stress associated with SES (potential limited resources or potential barriers faced by African Americans who have achieved economic success (Evans, 2004; N. K. Kaslow & Brown, 1995; McLoyd, 1998) |
Understand that (a) majority of African Americans in the United States are of lower SES, (b) low SES is a chronic stressor given the limited resources and financial struggle, (c) limited resources contributes to health disparities and reduced access to education, (d) African Americans who have achieved economic success often have faced unique barriers and struggles that are not encountered by Caucasians, (e) managing chronic illness may not be family’s main priority given need for basic survival, but that does not indicate lack of concern about illness.
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Acknowledge/validate stressors related to limited resources or strive for economic independence that may contribute to pain and limit access to medical care and medication, or that may create additional cumulative stressors. Address and problem solve related stressors as they arise. Be flexible and accommodating with regards to scheduling to respect work schedules (often jobs with non traditional hours), limited child care, and transportation issues. Provide guidance in identifying manageable steps to achieving goals related to managing disease when such goals may conflict with goals related to basic survival.
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| 5. Content should be culturally sensitive (Kaslow et al., 2000; Sue & Sue, 2003) |
Use culturally sensitive assessment materials, supportive materials (handouts, books, pamphlets), and language (i.e., language that is understandable, not offensive, and at appropriate reading level).
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Language of possible self-statements is flexible, broad, and chosen by adolescent. Suggestion list is based on feedback from African American adolescents and young adults. Participants choose imagery to promote cultural consonance, including active and exciting event like sports or familiar settings. Music may be incorporated into guided imagery. Manual, measures, and handouts are reviewed by members of the medical and research teams who know the adolescents with SCD. Many members of the teams are African Americans.
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| 6. Awareness of stigma of mental health problems (Thompson, Bazile, & Akbar, 2004; U.S. Department of Health and Human Services, 2001; Whaley, 2001) |
Understand the stigma associated with mental health problems and accessing mental health services for African Americans. Normalize, not pathologize, problems. Support and reinforce openness, disclosure, and help-seeking behavior. Join with respected medical providers in advertising and delivering the intervention to avoid association with mental health.
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Intervention is framed as a supplement to adolescents’ care to provide additional ways to manage disease. Structure of intervention is flexible to limit open-ended discussion if it is uncomfortable for participant. Medical team (including the widely admired program director) help to recruit for and support the intervention. Reinforce disclosure and openness. Identified mental health problems are referred to clinic social worker, a respected, and nonthreatening resource.
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| 7. Awareness that many African Americans have a mistrust of medical research (Corbie-Smith, Thomas, Williams, & Moody-Ayers, 1999; Green, Maisiak, Wang, Britt, & Ebeling, 1997; Green et al., 2000) |
Understand historical mistrust of medical research on the part of African Americans given past history of exploitation (e.g., Tuskegee airman study). Recognize increased importance of building rapport and trust.
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Objectives of the study are clearly reviewed during informed consent/assent procedures and at each session; no deception is involved. Make effort to immediately familiarize participants with the research team via a handout with teams’ pictures and names. Allow time in sessions and weekly phone contact to explore and problem solve other issues, concerns, and questions to build rapport and trust. Send birthday cards and personalized notes from interventionists after each visit to build rapport and reinforce appreciation of continued participation.
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| 8. Provide community- or home-based intervention (Celano & Kaslow, 2000) |
Appreciate the barriers (e.g., lack of money, time, access to transportation or child care, need to prioritize other family needs) to getting to the hospital or clinic setting for interventions. Offer interventions that are based in the home or community to increase access to them.
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Participants choose location of the intervention. Almost all prefer their homes. Develop and maintain procedures for safety of interventionists with regard to questionable neighborhood settings and/or houses.
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| 9. Allow flexibility in scheduling (Kaslow & Brown, 1995) |
It is difficult to maintain a rigid intervention schedule due to the fact that (a) many African American caregivers juggle the needs of extended family members and friends, are working many (and unusual) hours outside the home, and experience many cumulative stressors; and (b) African American adolescents commonly work outside the home or care for younger children.
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Interventions may be conducted at any time in the day ending by 9:00 p.m. to accommodate various preferences and work schedules. Weekend times are offered. Participants are reminded of appointment times via phone calls (1 day in advance and within 1 hr of appointment), appointment cards, and letter sent after each session.
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| 10. Research team must be trained in cultural sensitivity with African Americans (American Psychological Association, 2003; Kaslow & Brown, 1995
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A research team, whether directly involved with patients or not, should have training with regards to culturally sensitive approaches to working with African Americans. Team should recognize and address their own misconceptions and prejudices related to working with African Americans. Research team is trained to understand how to effectively interact with and be received positively by African Americans.
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Research team trained to understand high prevalence of and related complications of SCD, and impact on family, especially within the context of other stressors such as minority status, limited resources, and health disparities. Interventionists are supervised on how their own beliefs impact the delivery of intervention. Research team is ethnically diverse. Journal club focuses on articles related to cultural sensitivity and working with diverse populations.
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