Chronic Illnesses, Disabilities, Secondary Conditions and the Culturally Diverse Family

1. Chronic Illnesses, Disabilities, Secondary Conditions and the Culturally Diverse Family Lucy Wong Hernandez, M.S. Daniel Wong, Ph.D. East Carolina University Part I October 19, 2007 Part II November 2, 2007

2. Philosophical Concept of this Presentation To acquire a wider understanding that will advance the rehabilitation process, prevention of health related challenges such as secondary disabling conditions and taking into account the significant importance of cultural factors and enhancing the quality of life of persons with chronic illnesses and disabilities.

3. Goals and Objectives Goals: 1. To discuss issues related to Chronic illnesses, disabilities, secondary conditions and the culturally diverse family and how they impact the rehabilitation process of the consumer. 2. To highlight the challenge presented by a paradigm shift for future rehabilitation and family services application in a culturally diverse society that demands: - a better understanding and implementation of how rehabilitation and other disciplines in the human service field will adapt to the multiple issues presented by the consumers and families they serve.

4. …Objectives Objectives: 1. This presentation will provide an understanding of how cultural factors play a significant role within families who have members with significant physical and mental health related issues such as chronic illnesses, disabilities and secondary disabling conditions. 2. To discuss the significance of how cultural factors will contribute to the coping, adjusting, caring and managing of family members who acquired chronic illnesses, disabilities and secondary disabling conditions -- as a vital importance when assisting and providing rehabilitation services as an intervention. 3. A summary of cultural competence skills recommendations for working with consumers and their families from diverse cultural and ethnic backgrounds will be presented.

5. Introduction It is critically important to understand how cultural factors play a significant role within families who have members with significant physical and mental health related issues such as illnesses, disabilities, and secondary disabling conditions. The American culturally diverse population deserves to receive services that match their culturally based life situations when dealing with chronic illnesses, disabilities and secondary disabling conditions.

6. Medical Intervention Psycho-Social Intervention Rehabilitation Main Goals Prevention of Secondary Conditions & Improving Quality of Life Consumer Involvement Family Intervention Community Support

7. Rehabilitation Main Goals Rehabilitation Main Goals I. Prevention of Secondary Conditions II. Improving Quality of Life

8. Five Major Factors • Medical Intervention • Psycho-Social Intervention • Consumer Involvement • Family Intervention 5. Community Support

9. Understanding the definition of culture • Culture can be construed as the set of rules, shared belief systems, attitudes and norms that promote stability and harmony within a social group. • Culture regulates and organizes what a group feels, perceives, thinks or does, but may be expressed individually in a variety of ways.

10. Understanding… culture • Culture includes: . familial roles and functions; . patterns of social and interpersonal communication; . affective styles and perception . values and ideals; . spirituality and religion; . habits of communication with others cultures; . artistic expressions and customs . rituals and celebrations; . geographical and historical locations.

11. Culturally diverse family • Despite the fact that cultural influences are on every fabric of society, they are often unrecognized or unappreciated. • These factors are often at the root of much emotional conflict within and between individuals and including among different professionals fields. • The culturally diverse family is deeply rooted in the fabric of society and service provision needs to take this into account. • Some families also offer the unique aspect of being multicultural within the same family system.

12. Chronic Illnesses There are two types of illnesses: acute and chronic. • Acute illnesses depending on its severity (like a cold or the flu) are usually over relatively quickly. • Chronic illnesses are long-lasting health conditions that may have consequences of secondary conditions that are related to the primary chronic condition (such as diabetes and limb amputations).

13. Chronic Illnesses • Having a chronic condition does not necessarily mean an illness is critical or dangerous. • Some chronic illnesses, such as cancer and AIDS, can be life threatening. • But chronic illnesses can also include conditions like asthma, arthritis, cardio vascular diseases and diabetes. • Chronic conditions become permanent disabling conditions.

14. Secondary Conditions • Secondary conditions (SC) are those not present at birth -- but occur later on as a result of the primary disability condition. • They are medical, physical, cognitive, emotional, and psychological consequences to which persons with disabilities are more susceptible to due to their primary disability.

15. Secondary Conditions Adverse outcomes in: • Health • Wellness • Family and community participation • Quality of life

16. Implications of Secondary Conditions Secondary Conditions add new dimensions not fully captured by the medical model definition: • a) non-medical events such as social isolation and environmental barriers; • b) conditions that affect the general population such as obesity and diabetes -- but which more greatly affect people with disabling conditions; • c) problems that arise during the lifespan, like inaccessible preventive medical screening among many other procedures; • d) lack of access and affordability to therapeutic services, among others.

17. Prevalence • Research indicates that over 87% of the population with disabilities report having at least one secondary condition (SC). • Participants reported to experience different types of SC in the period of 12 months as the result of the primary disability.

18. Common Secondary Conditions • Chronic pain in muscles & joints • Sleep disorder • Extreme fatigue • Weight & diet problems • Muscle spasms • Respiratory infections • Skin problems • Renal problems …

19. Mental Health Psychological issues: • Periods of depression • Episodes of anxiety • Feelings of isolation • Psychosocial isolation • Behavioral problems

20. Risk factors • Type and severity of primary disability • Lack of health maintenance • Poor health status • Education • Income • Activity limitations • Age • Injuries

21. Challenges contributed by secondary conditions • Disability related complications that further limit a person’s ability to: • full rehabilitation (medical, vocational & psychosocial); • participation in activities of daily living; • interpersonal relationships • education; • employment.

22. Challenges… • Some secondary conditions are preventable; • some are part of the course of the primary disability; • they are associated with a higher risk of poor health, psychological set-backs; • disrupted school and employment experiences; • greater number of days unable to perform routine activities.

23. Family, Culture and Disability Cultural differences and the role of parents and family in the lives of people with disabilities. • Western culture adopts definitions of disability established by our legal or professional institutions. • Other cultures may define disability differently.

24. Impact on the family • Disability impacts the entire immediate family: economically and psychologically • Family roles may shift due to the onset of disability • Family must often adjust to greater isolation • Increased responsibility on siblings • Family members may feel a loss of physical and emotional support

25. Assumptions: Disability is a physical condition Disability is an individual condition Disability is a chronic illness Disability requires a cure or “fixing” > Disability is a spiritual condition > Disability is a group condition > Disability is a time-limited condition > Disability must be accepted Medical Model vs. Cultural-based Model

26. Disability perceived as a Spiritual Condition Some examples: • Disability is a punishment for past sins • Disability is a condition to test your endurance • A child with a disability is a gift from God • A child with a disability is an ancestor who has come back to the family

27. Cultural Perspectives of Chronic Illnesses, Disabilities, and Secondary Conditions • Different cultures may have a different perception, understanding, expectation and mode of treatment of chronic illnesses, disabilities and including secondary conditions. • Diverse cultural groups may have culturally based opinions and expectations of professionals in the medical, mental health and rehabilitation and other related human services. • Universal Perspective: Good health is an interest of people of all cultures.

28. Disability as a “Group” Condition • Everyone will become old and acquire a disability someday • The person is not solely responsible for its occurrence • Family members share responsibility for the occurrence of the disability

29. Accepting Disability For some non-western cultural families a child’s impairment is an act of God and is beyond human comprehension and ability to cure. Taking care of a family member with a disability will clean your soul and your spirit. Among the Asian cultures these challenges may be perceived as part of the family’s “karma” before entering another level of existence. For the Hispanic culture it may be perceived as “destiny” and an opportunity to be become a better person.

30. Attitudes Toward Life Events • Culturally-based attitudes of resignation and acceptance of life. • Passive attitudes for both Hispanics and Asians should not be misunderstood with lack of interest or feelings of guilt and resignation.

31. Other Important Factors • Cohesive, protective, family-oriented society • Impact of religious views • Perception of physical and mental disabilities • It is important to understand the cultural values of a given group -- in order to understand the meaning of that group’s behavior.

32. The impact of chronic illnesses, disabilities, and secondary conditions on the family. • Economic burden (medical, rehabilitation & PA) • Psychological impact • Demand on managing and caring for the individual with the condition • Family members affected by multiple reasons

33. Family Involvement Family involvement facilitates: • Personal and family adjustment to disability • Vocational placement and adjustment • Working with rehabilitation professionals • Adaptation and treatment compliance • Understanding the nature of the disability and the implications and the need to prevent secondary conditions • Empowers professionals with respect to cultural understanding and awareness

34. Family Involvement • A study 20 years ago indicated that less than 2% reported that family services were provided. • Family cultural diversity is rapidly increasing • It is projected that by the year 2020, --- 30% of the new workers entering into the labor force will be people from diverse cultural and ethnic backgrounds --- also classified as people from minority backgrounds. • According to data from the Department of Labor: There is a higher incidence of work disabilities among minorities: * 13.7% --- of African Americans * 8.2% --- of Hispanic Americans

35. Training recommendations for educational programs To have a better understanding of the culturally diverse family: • The attitudes and self awareness of the students should be evaluated. • Students should be required to demonstrate self-reflective awareness and provide culturally appropriate therapeutic assessment and interventions to consumer/client and their family members or significant others. • Training models with respect to the understanding of the implications of chronic illnesses and disabilities to diverse cultures should be requirements in any curriculum for educational training.

36. Training recommendations … • Students should be trained to understand the difference and similarities among various cultures with respect to their practice of social and medical models. • It is critically important for students to be trained to identify the consumers/clients” and their immediate family members’ strengths and weaknesses and their spiritual and cultural context. • Students should be trained to develop an appropriate intervention plan based on the ability to communicate cross-culturally.

37. Training recommendations… • Students should be trained to work and to empower families who have family members with chronic and disabling conditions -- - is a critical step to encourage families to identify their needs and strengths in order for them to assist their family members more effectively. 8. Training modules should enable students to demonstrate ability to communicate effectively across diversity of cultures, ethnicities and spiritual traditions.

38. Training recommendations… • Awareness of cultural contexts will enhance cultural differences focus on a variety of aspects such as: -relation of individual with family and community before and after onset of chronic illnesses and/or disabilities. 10. The motivation of becoming culturally competent benefits the trainees beyond the need for a successful career. 11. The consumer-family-counselor team contributes the process of rehabilitation and adaptation to life with a disability. 12. The consumer-family-counselor team contributes the process of rehabilitation and adaptation to life with a disability.

39. Conclusion • The challenge of understanding the culturally diverse family with health and disability issues is a life long journey and the destination is the process itself. • Efforts to become culturally competent in order to have a better understanding of the implications of chronic illnesses, disabilities and secondary conditions are vital part of our profession. • The positive impact of the services on the individual and his/her family is a challenging one for service providers. • All efforts and methods used to deliver human services including rehabilitation services must point to the direction of achieving quality of life for the consumer and his/her family.

40. Conclusion What does it take? • Cultural humility while thinking critically. • The ability to remain open-minded, imaginative, receptive and curious. • Overcoming all obstacles to the delivery of effective quality culturally based services. • Overcoming: confusion, defensiveness, fear, ignorance, and the attachment to one’s personal cultural views. • Embracing the “new”, engaging in an intercultural exchange that is ethical, spiritual and deeply challenging to enhance professional knowledge. • Contacts: wongd@ecu.edu wongl@ecu.edu

41. THANKS!