Cultural Diversity in Pediatric Transplant and Psychosocial Interventions for Families

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Cultural Diversity in Pediatric Transplant and
Psychosocial Interventions for Families

• Daniel L. Clay, Ph.D.
• University of Iowa
• May 5, 2006
• Toronto
• http//www.education.uiowa.edu/people/facstaffs/dc
  lay.htm

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Outline

• I. Culture and Health Connection
• II. Culture and Psychosocial Treatments
• III. Sociocultural Transplant Experience Model
  (STEM)
• IV. Cultural Issues in Transplantation
• V. Guide for Clinical Decision Making
• VI. Summary
• VII. References

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Culture and Health

• Health Disparities
• Race and ethnicity are empirically linked to
  prevalence rates and outcomes for numerous health
  conditions
• Cancer - Obesity
• Diabetes - Heart Disease
• Sickle Cell Disease - Liver Disease
• Asthma - Injury
• (Flack et al., 1995 Johnson et al., 1995)

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Culture and Health

• Health Disparities
• Race, Ethnicity and Culture also related to
• - Mortality
• - Functional Impairment/Disability
• - Treatment Adherence
• - Secondary Health Complications
• - Health Care Access and Utilization
• (Clay et al., 2002)

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Culture and Health

• Cultural Definitions and Values
• can play an important role in health-related
  disorders.
• Example Obesity and Body Type/Size
• Example Definition of Health and Wellness

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Culture and Health

• Treatment Issues
• Culture is often related to
• - Acceptability
• - Receptiveness
• - Expectations
• - Adherence
• (Clay, 2000 Penn et al., 1995)

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Culture and Psychosocial Treatments

• Treatment Issues
• Treatment by Culture Interaction
• Psychosocial treatments have cultural assumptions
• Congruence with cultural norms and values is
  critical
• Less congruence decreased adherence and benefit
• Goal is to increase congruence and capitalize on
  strengths
• (Clay, 2000 Clay et al., 2002 Maloney et al.,
  2005)

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Culture and Psychosocial Treatments

• Emphasis on Evidence Based Practice
• Managed Care has led to an emphasis on empirical
  foundation for clinical practice
• Empirically Validated (EVT) to Empirically
  Supported (EST) to Evidence Based Treatments
  (EBT)
• Explicit criteria for what constitutes an EST
• Organizations have created Practice Guidelines
  based on ESTs

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Culture and Psychosocial Treatments

• Empirically Supported Treatments and Diversity
• ESTs have been criticized for their lack of
  validity with diverse populations (Clay et al.,
  2002 Sue, 1999).
• Treatment studies fail to employ diverse samples
• Lack of culturally appropriate measurements and
  designs
• Fail to acknowledge cultural assumptions and
  biases of treatments
• Fail to examine mediating/moderating role of
  cultural variables

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Culture and Psychosocial Treatments

• Examination of Empirically Supported Treatments
  in Pediatric Psychology (Clay et al., 2002)
• Purpose To examine the extent to which ESTs for
  pediatric health problems address critical issues
  of culture.
• For this study, culture includes race, ethnicity,
  and socioeconomic status. Other variables are
  also important (e.g., religious/spiritual
  orientation, sexual orientation, gender).

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Culture and Psychosocial Treatments

• J. Pediatric Psychology special issues on ESTs
• Examined 71 original studies used to support ESTs
  for pediatric cancer, diabetes, asthma, obesity.
• Disease groups were chosen because
• 1. They are common conditions requiring
  psychosocial interventions
• 2. Data have linked them specifically to race,
  ethnicity, and culture
• 3. ESTs for these conditions were recently
  published

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Culture and Psychosocial Treatments

• Variables
• Six variables chosen and operationalized from
  literature.
• 1. Race/Ethnicity sample was reported
• 2. SES any indication of income, occupation,
  education
• 3. Moderating Cultural Variables
• Mention of ethnic variable shown or hypothesized
  to be related
• Statement that racial or ethnic groups differ

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Culture and Psychosocial Treatments

• 4. EST Cultural Bias any differential
  treatment effects for diverse groups mentioned
• 5. Larger Cultural Issues mention of cultural
  issues beyond initial study
• 6. Measurement/Procedure Bias mention cultural
  appropriateness of procedures or measures for the
  sample

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Culture and Psychosocial Treatments

• Raters
• Two psychology doctoral students rated all
  articles separately
• Advanced training in research design,
  multicultural issues in research and practice
• Met with PI until consensus reached on
  operational definitions
• Met again after 5 articles were rated to validate
  decision rules
• Overall agreement was 92
• Consensus was obtained for any discrepant ratings

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Culture and Psychosocial Treatments

• Results for 71 original studies
• 27 reported ethnic or racial composition of
  samples
• 11 reported any minority participants
• 18 reported SES of participants
• 6 discussed moderating cultural variables
• 7 recognized cultural assumptions/biases of
  treatments
• 6 mentioned any larger cultural issues
• Only 1 study mentioned cultural appropriateness
  of methods/measures

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Culture and Psychosocial Treatments

• Discussion Points
• ESTs fail to address cultural issues, even for
  diseases known to be related to culture
• Studies were mostly from 1970s and 1980s
• Critical need for research and evidence based
  practice models that incorporate cultural issues

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Sociocultural Issues in Transplantation

• Diversity
• More surviving recipients more psychosocial
  services
• Cultural diversity of patient pool is increasing
• Need exists for culturally appropriate, sensitive
  care for families
• Key is to understand systematic effect of
  individual differences on the transplant process
  and integrating awareness into each phase of the
  transplant process.

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Sociocultural Transplant Experience Model

• Maloney, Clay Robinson (2005). Sociocultural
  Issues in Pediatric Transplantation A Conceptual
  Model. Journal of Pediatric Psychology, 30,
  235-246.
• Provides an organized framework for understanding
  and integrating cultural issues in practice and
  research.
• Model is based on integration of transplant and
  diversity literatures and complemented by our
  clinical experiences.

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Sociocultural Transplant Experience Model
Sociocultural Factors
Outcomes
Phase I
Phase II
Phase III
Phase IV
Post-Transplant Post-Hospital
Health/Medical
Transplantation/ Hospitalization
Preoperative/Waiting
Assessment/ Candidacy
Psychosocial
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Sociocultural Factors

• Sex, Age, Race, Ethnicity
• Socioeconomic Status (SES)
• Sexual Orientation
• Spirituality/Religion
• Residential Factors include rural/urban location,
  neighborhood risks (e.g., access to
  drugs/alcohol, violence) distance needed to
  travel to receive care geographical isolation
• Disability/Functional Impairment
• Language
• View of Health/Wellness

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Phase I Assessment/Candidacy

• Perceptions of Family
• Culturally/Linguistically Appropriate Assessment
• Team-Patient-Family Relationship
• Beliefs about Death
• Access to Services

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Phase II Preoperative/Waiting

• Organ Allocation
• Waiting Time Disparities
• Team-Patient-Family Relationship
• Coping

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Phase III Transplantation/Hospitalization

• Cultural Assumptions andBiases of Psychosocial
  Treatments
• Team-Patient-Family Relationship
• Coping

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Phase IV Post-Transplantation/Post-Hospitalizati
on

• Health Behaviors/Adherence
• Treatment Acceptability
• Self-Efficacy
• Team-Patient-Family Relationship
• Health Risk Taking

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Health/Medical Outcomes

• Organ Rejection/Failure
• Death / Survival
• Healthcare Utilization and Costs
• Medical Complications
• Functional Capacity

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Psychosocial Outcomes

• Psychosocial Adjustment
• Patient-Family Satisfaction
• Quality of Life
• School/Work Attendance
• Peer Relationships

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Multicultural Counseling Competencies

• 5-Step Decision Making Model
• 1. Evaluate which, if any, cultural aspects are
  relevant
• 2. Determine level of skills/knowledge
  necessary, refer if necessary
• 3. Determine how much, when and how to
  incorporate cultural issues
• 4. Examine potential treatments and cultural
  assumptions of each
• 5. Implement the treatment using cultural
  strengths
• Liu Clay (2002). Multicultural Counseling
  Competencies Guidelines in working with
  children. J. of Mental Health Counseling, 24,
  177-187.

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SUMMARY

• Cultural issues are important in pediatric
  transplant
• Culturally Competent Care maximizes positive
  outcome
• A systematic approach to integrating diversity is
  needed
• STEM model is one example of a useful framework
• More research is needed to validate use of EBT
  with diverse groups

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References

• Clay, D.L. (2000). Commentary Rethinking our
  interventions in pediatric chronic pain and
  treatment research. J. Pediatric Psychology, 25,
  53-55.
• Clay, D.L., Mordhorst, M.J. Lehn, L. (2002).
  Empirically supported treatments in pediatric
  psychology Where is the diversity? J. Pediatric
  Psychology, 27, 325-337.
• Flack, J.M, Amaro, H., Jenkins, W., Kunitz, S.,
  Levy, J., Mixon, M., Yu, E., (1995). Panel I
  Epidemiology of minority health. Health
  Psychology, 14, 592-600.
• Johnson, K.W., Anderson, N.B., Bastida, E.,
  Kramer, B.J., Williams, D. Wong, M. (1995).
  Panel II Macrosocial and environmental
  influences on minority health. Health
  Psychology, 14, 601-612.
• Liu, W.M. Clay, D.L. (2002). Multicultural
  Counseling Competencies Guidelines in working
  with children. J. of Mental Health Counseling,
  24, 177-187.
• Maloney, R., Clay, D.L. Robinson, J.R. (2005).
  Sociocultural issues in pediatric
  transplantation A conceptual Model. J.
  Pediatric Psychology, 30, 235-246.
• Penn, N.E., Kar, S., Kramer, J., Skinner, J.,
  Zambrana, R.E. (1995). Panel VI Ethnic
  minorities, health care systems, and behavior.
  Health Psychology, 14, 641-646.
• Sue, S. (1999). Science, ethnicity, and bias
  Where have we gone wrong? American Psychologist,
  54, 1070-1077.