Heyam Dalky, PhD, RN Jordan University of Science & Technology Spring, 2009

1. Translation and Cultural Adaptationof theStigma-Devaluation Scalefor Use among Family Caregivers of Mentally Ill Relatives in Jordan By Heyam Dalky, PhD, RNJordan University of Science & TechnologySpring, 2009

2. Background & Significance

3. Significance Of the Problem • It is estimated that more than 25% of people worldwide have been diagnosed with mental illness at least once in their lifetime (WHO, 2001). • Major depression will be the second leading cause of disability worldwide by the year 2020 (WHO, 2001).

4. Barriers from Obtaining Appropriate Mental Health Care • Racial, ethnic, familial, cultural and stigma factors (Surgeon General’s Report, 1999). • 20% of Americans might not choose to seek help from a mental health professional because they feel there is a stigma associated with therapy (APA Survey, 2004).

5. STIGMA Stigma Stigma • “Stigma, defined as being socially discredited or perceived as flawed based on a personal characteristic, has negative social implications” (Sanders Thompson, Noel, & Campbell, 2004) Stigma Stigma

6. Gaps In the Literature • Few research studies have been conducted in the Arab World on family members’ perception of stigma associated with caring for a mentally ill relative. • No studies have been identified in Jordan. • This might be due to the variation of mental disorders and the lack of congruent valid and reliable research instruments in Arabic.

7. Measuring Stigma Perception • To date, there is no consensus about the dimensions of instruments to measure stigma from the family perspective. • Few if no efforts from the Arab World were seen to define mental illness stigma or conduct studies to explore this phenomenon and its impact on both patients and their families.

8. Purpose of the Study • The overall purpose of the study is to translate and test the Stigma-Discrimination Scale (SDS) into Arabic, following the process of translation and cross-cultural adaptation of an instrument as purposed by Lopez-McKee (2005).

9. Specific Aims • Translate the Stigma-Discrimination scale (SDS) into Arabic, specifically modifying it to accurately reflect the cultural parameters specific to Jordan. • Test the reliability of the Arabic version of the SDS for use among a sample of family members of mentally ill relatives in Jordan. • Test the content and construct validity of the Arabic version of the SDS for use among a sample of family members of mentally ill relatives in Jordan.

10. Selection of The SDS for Translation • Review of the literature on measurement of the concept of stigma related to caring for a chronic mentally ill family member yielded no instrument appropriate for use in a Jordanian sample. • The SDS was used most frequently and was considered to be the instrument that best measures stigma from the perspective of family members.

11. The SDS • The SDS assesses family members’ beliefs about the extent of devaluation and stigma directed toward individuals with mental illness and their families. It consists of two sections: • The consumers scale: consists of eight items, which are intended to measure patient-focused stigma/devaluation (Link et al., 1989). • The consumer families’ scale: consists of seven items, which are intended to measure caregivers-focused stigma/devaluation (Struening et al., 1995).

12. The SDS • Responses are made on a 4-point scale ranging from 4, strongly agree, to 1, strongly disagree. Items are summed for an overall stigma score, with higher scores indicating greater perception of mental illness stigma.

13. Reliability Evidence of the SDS • The original SDS was used and tested among various groups of caregivers in the United States of America. • The SDS provides moderately high evidence of reliability and validity. • Cronbach’s alpha of .77 to .88 was reported for the consumers’ scale. • Cronbach’s alpha of .71 to .77 was reported for the consumer families scale. (Gonzales et al., 2007; Sher et al., 2005).

14. Validity Evidence of the SDS • One study reported factor analysis of both scales. • Three important constructs and dimensions of discrimination and stigma per each scale were identified: • Consumers scale: status reduction, role restriction, and friendship refusal. • Consumer Families scale: community rejection, causal attribution, and uncaring parents . (Struening et al., 2001).

15. Jordan: Familial Perspectives • Family is the main social unit. • The Arab family contributes to illness behaviors, illness patterns, and illness management of family members. • Extended family households and nuclear families maintain a functional extended family. • The care of the sick is the family’s responsibility in almost all Arab countries.

16. Mental Illness Stigma: Jordanian Cultural Perspectives • The weight of a cultural taboo for persons hospitalized in psychiatric settings carries a risk of rejection, non-marriage, or divorce. • More stigmatizing for females than males. • Disgrace the family reputations.

17. Health Services In Jordan • There are three major health service providers: • a large private sector. • a military health services sector. • a public health services managed by the Ministry of Health, which provides free or low-cost services to between 30% and 40% of the population (WHO, 2005).

18. The National Mental Health Center (In-patient services). There are three primary mental health clinics located in the three main cities of Amman, Zarqa, and Irbid. These clinics provide : basic primary mental care. follow-up care Mental Health Services in Jordan

19. Research Design & Methods • Design: Cross-sectional • Setting: Out-patient health clinic in Irbid, Jordan.

20. Study Phases • This study involved two phases. • The translation phase. • The psychometric phase.

21. The Initiation of the Consensus Arabic Version of the SDS • Forward and Back-Translation Series: Bilingual & Bicultural translators. • Review Panel: Bilingual & Bicultural experts. • Content Validity: Lynn’s(1986) content validity index • Pilot Testing.

23. The First Phase Results • Four bilingual and bicultural experts evaluated the content validity, clarity and reading level of the translated Arabic SDS. • Item revisions and modifications were correspondingly made to produce the “consensus“ Arabic SDS.

26. Arabic SDS Reading Level • The original SDS reading level was at 6th grade (based on the Flesch-Kincaid Index provided by Microsoft Word, 2003). • According to the review panel and the Department of Education at the Hashemite University in Jordan , agreement was made that it is at 6th grade level of reading or lower.

27. Item-Content Validity Index (I-CVI) • The proportion of experts that agree each item is content valid (achieved a rating of 3 or 4) was 15/15; revealed that the current Arabic SDS has an I-CVI of 1.00.

28. Pilot Testing • A pilot study using the Arabic version of the SDS was conducted with a sample of 11 Jordanian family members of mentally ill relatives in May 2008. • Cronbach’s alpha reliability coefficient for this study was found to be 0.79, as compared to reliability estimates ranging from 0.71-0.88 in other studies utilizing the original SDS .

29. The Second Phase: Psychometric Testing of the Arabic SDS • Population and Setting • The target population of the study was adult (≥ 18 years of age) family members of mentally ill relatives. • The mentally ill relatives are currently seen in the outpatient mental health clinic in the city of Irbid, Jordan.

30. Study Subjects: Inclusion Criteria • For this study, family members were: • men or women 18 years of age or older who lived with the mentally ill-relative and were a parent, spouse, child (daughter or son), or sibling. • Any family member who identified himself/herself as being under treatment for a mental illness was not included in the study.

31. Instrumentation • The translated Arabic SDS was used for data collection. • A short demographic questionnaire was added. • Age, gender of family member and his/her ill relative, duration of illness and relation to the mentally ill relatives.

32. Results & Discussions

33. Demographic Characteristics • There were no missing data and no particular response patterns were observed in the data. • A total of 164 participants completed the Arabic SDS.

34. Demographic Characteristics • In regard to caregivers: • The mean age was 44.5 (SD=11.7) years; 68.9% were women and 31.1% were men. • 30.5% were mothers, 22.6% were brothers or sisters, 18.9% were wives, 11.5% were fathers, 10.4% were sons or daughters, and 6.1 % were husbands.

35. Demographic Characteristics • In regard to the ill relatives: • The mean age was 36.4 (SD=10.7), 55.5 % were men and 44.5% were women. • The majority of the ill relatives (59.1%) had a duration of mental illness of more than five years, 16.5% had a duration that was between 3-5 years, 15.9% had a duration between 1-3 years and 8.5% had been ill for less than one year.

36. Confirmatory Factor Analysis using AMOS

37. Fit of Scale Structure to Current Data • Structural equation models were created based on the hypothesized factor structure for both SDS scales as defined by Struening et al. (2001). • Then, each model was tested using the data from the current study sample to determine how well the data fit the hypothesized SDS scales’ structures based on the measures of fit (Fit Indexes). (Struening et al., 2001)

38. Original Consumers Scale (8 Items)

39. Consumer Scale- Two Factors

41. The Final Consumers Scale Model 4 • Two-factor Structure: • Status Reduction • Role Restriction • Removal item-3 • Correlates error terms (err1/err2) and (err6/err7) • Fit the current data the best. • The test of the χ² differences among the various models showed; that the modified two-factor (model 4) χ² difference is statistically significant (p<.01).

42. Final Modified Consumer Scale

43. The Test of the χ² Differences among the Various Models

44. The Original (7-items) Consumer Families Scale • Composed of three latent factors and seven observed items. • The initial run for the consumer families scale using the current data failed to reach an acceptable level. (Struening et al., 2001)

45. Original Consumer Families Scale (7-Items)

50. Final Consumer Familiesscale One-factor • Correlating error terms (err11/err15) • Fit the current data the best. • The test of the χ² differences among the one-factor structure models showed; that the modified one-factor (model 5 & 6) χ² difference is statistically significant (p<.01).