Reexamining epilepsy-associated stigma: validation of the Stigma Scale of Epilepsy in Zambia.

PURPOSE: Epilepsy-associated stigma is an important patient-centered outcome, yet quantification remains challenging. Jacoby's 3-item Stigma Scale is commonly used to assess felt stigma among people with epilepsy (PWE) yet has ceiling effects. The Stigma Scale of Epilepsy (SSE) is a 24-item instrument that measures felt stigma among PWE and stigmatizing attitudes among others. If cross-culturally valid, the SSE may elucidate stigma determinants and provide an outcome measure for interventions. METHODS: We assessed the properties of the SSE in 102 Zambian PWE using exploratory and confirmatory item response theories and compared the latent traits assessed by the SSE to those assessed by Jacoby's Stigma Scale. Differential item functioning based on forced disclosure of epilepsy was examined. RESULTS: The SSE yielded two latent traits--the first reflected difficulties faced by PWE; the second reflected emotions associated with epilepsy. Jacoby's Stigma Scale was associated only with the first latent trait. Forced disclosure was associated with "worry" and "pity" that were associated with the second latent trait. CONCLUSIONS: In Zambian PWE, the SSE captured two latent traits. One trait represents feelings associated with epilepsy, which is theorized as a substantial yet unmeasured part of stigma. The SSE performs well across cultures and may more comprehensively assess felt stigma than other instruments. Further validation is required to determine whether the SSE adequately assesses stigmatizing attitudes among people without epilepsy.

Stigma and psychiatric morbidity among mothers of children with epilepsy in Zambia.

BACKGROUND: Epilepsy-associated stigma contributes substantially to the social, medical, and economic burden of disease for people with epilepsy (PWE), but little is known about its impact on caregivers of PWE. METHODS: To better understand stigma experienced by caregivers of PWE, factors that influence caregiver stigma, and the effect of stigma on a caregiver's psychologic well being, we interviewed 100 caregivers of children with epilepsy in Zambia. Questions assessed maternal knowledge, attitudes, and practices related to epilepsy, maternal stigma, mother's proxy report of child stigma, and maternal psychiatric morbidity. RESULTS: Of 100 mothers, 39 (39%) indicated that their child was stigmatized because of his or her epilepsy. Maternal proxy report of child stigma was highly correlated with maternal stigma (OR: 5.4, p=0.04), seizure frequency (p=0.03) and seizure severity (p=0.01). One in five of 100 mothers (20%) reported feeling stigmatized because of their child's epilepsy. Higher maternal stigma was associated with lower familial and community support (ORs: 65.2 and 34.7, respectively; both p<0.0001) as well as higher psychiatric morbidity (OR: 1.2; p=0.002). Formal education and epilepsy knowledge were associated with decreased maternal stigma (ORs: 0.8 and 0.7, respectively; both p<0.001). CONCLUSIONS: One in five mothers of PWE feel stigmatized because of their child's epilepsy. As maternal stigma is associated with psychiatric morbidity, educating caregivers about epilepsy and screening for anxiety and depression are warranted.

Peer support groups as an intervention to decrease epilepsy-associated stigma.

Eighty percent of people with epilepsy (PWE) reside in low-income countries where stigma contributes substantially to social and medical morbidity. Peer support groups (PSGs) are thought to be beneficial for people with stigmatized conditions, but little data exist regarding PSG effectiveness. We facilitated monthly PSG meetings for men, women, and youth from three Zambian clinics for one year. Pre- and post-intervention assessments measured internalized stigma, psychiatric morbidity, medication adherence, socioeconomic status, and community disclosure. Of 103 participants (39 men, 30 women, and 34 youth), 80 PWE (78%) attended ≥ 6 meetings. There were no significant demographic differences between PWE who attended ≥ 6 meetings and those who attended <6 meetings. Among youth attending ≥ 6 meetings, internalized stigma decreased (p<0.02). Among adults, there was a non-significant stigma decrease. No differences were detected in medication use, medication adherence, or psychiatric morbidity. Peer support groups effectively reduce stigma for youth and may offer a low-cost approach to addressing epilepsy-associated stigma in resource-poor settings.

The cost of implementing a nationwide program to decrease the epilepsy treatment gap in a high gap country.

Healthcare systems in many low income countries have evolved to provide services for acute, infections and are poorly structured for the provision of chronic, non-communicable diseases which are increasingly common. Epilepsy is a common chronic neurologic condition and antiepileptic drugs are affordable, but the epilepsy treatment gap remains >90% in most African countries. The World Health Organization has recently released evidence-based guidelines for epilepsy care provision at the primary care level. Based upon these guidelines, we estimated all direct costs associated with epilepsy care provision as well as the cost of healthcare worker training and social marketing. We developed a model for epilepsy care delivery primarily by primary healthcare workers. We then used a variety of sources to develop cost estimates for the actual implementation and maintenance of this program being as comprehensive as possible to include all costs incurred within the health sector. Key sensitivity analyses were completed to better understand how changes in costs for individual aspects of care impact the overall cost of care delivery. Even after including the costs of healthcare worker retraining, social marketing and capital expenditures, epilepsy care can be provided at less than $25.00 per person with epilepsy per year. This is substantially less than for drugs alone for other common chronic conditions. Implementation of epilepsy care guidelines for patients receiving care at the primary care level is a cost effective approach to decreasing the epilepsy treatment gap in high gap, low income countries.

Integration of Services for Victims of Child Sexual Abuse at the University Teaching Hospital One-Stop Centre

"Objective. To improve care of sexually abused children by establishment of a ""One Stop Centre"" at the University Teaching Hospital. Methodology. Prior to opening of the One Stop Centre; a management team comprising of clinical departmental heads and a technical group of professionals (health workers; police; psychosocial counselors lawyers and media) were put in place. The team evaluated and identified gaps and weaknesses on the management of sexually abused children prevailing in Zambia. A manual was produced which would be used to train all professionals manning a One Stop Centre. A team of consultants from abroad were identified to offer need based training activities and a database was developed. Results. A multidisciplinary team comprising of health workers; police and psychosocial counselors now man the centre. The centre is assisted by lawyers as and when required. UTH is offering training to other areas of the country to establish similar services by using a Trainer of Trainers model. A comprehensive database has been established for Lusaka province. Conclusion. For establishment of a One Stop Centre; there needs to be a core group comprising of managers as well as a technical team committed to the management and protection of sexually abused children."

The current availability of antiepileptic drugs in Zambia: implications for the ILAE/WHO "out of the shadows" campaign.

Recent concerns regarding antiepileptic drug (AED) availability in Zambia led us to conduct a study in the Lusaka and Southern Provinces to quantify the availability and cost of AEDs and assess determinants. Among 111 pharmacies, almost one-half did not carry AEDs (N = 54; 49.1%). Available AEDs were phenobarbitone (21; 18.9%), carbamazepine (27; 24.3%), valproic acid (4; 3.6%), and phenytoin (3; 2.7%). Adult out-of-pocket monthly costs ranged from US $7 to $30. Pediatric syrups were universally unavailable. Interviews revealed several barriers to AED provision, including that handling phenobarbitone (historically the most affordable AED) has become increasingly difficult because of newly enforced regulatory requirements. Personal communications with epilepsy-care providers in other low income countries suggest that this problem may be widespread. Improved enforcement of existing drug regulations may be contributing to the AED shortage. Social programs aimed at encouraging people with epilepsy to come "out of the shadows" must be preceded by improved AED access.

Epilepsy-associated stigma in Zambia: what factors predict greater felt stigma in a highly stigmatized population?

Epilepsy-associated stigma in Africa has been described largely in terms of enacted stigma or discrimination. We conducted a study of 169 adults with epilepsy attending epilepsy clinics in Zambia's Lusaka or Southern province using a three-item instrument (maximum score = 3). Potential determinants of felt stigma including age, gender, education, wealth, disclosure status (meaning whether or how their community members knew of their condition), seizure type (generalized vs partial), seizure frequency, the presence of visible epilepsy-associated stigmata, personal contagion beliefs, and community contagion beliefs. The median stigma score was 2.5, suggesting some ceiling effect in the instrument. People with epilepsy who believed their condition to be contagious, who thought their community believed epilepsy to be contagious, and whose condition had been revealed to their community against their wishes reported more felt stigma. Community and clinic-based educational campaigns to dispel contagion beliefs are needed.

Integration of services for victims of child sexual abuse at the university teaching hospital one-stop centre.

Objective. To improve care of sexually abused children by establishment of a "One Stop Centre" at the University Teaching Hospital. Methodology. Prior to opening of the One Stop Centre, a management team comprising of clinical departmental heads and a technical group of professionals (health workers, police, psychosocial counselors lawyers and media) were put in place. The team evaluated and identified gaps and weaknesses on the management of sexually abused children prevailing in Zambia. A manual was produced which would be used to train all professionals manning a One Stop Centre. A team of consultants from abroad were identified to offer need based training activities and a database was developed. Results. A multidisciplinary team comprising of health workers, police and psychosocial counselors now man the centre. The centre is assisted by lawyers as and when required. UTH is offering training to other areas of the country to establish similar services by using a Trainer of Trainers model. A comprehensive database has been established for Lusaka province. Conclusion. For establishment of a One Stop Centre, there needs to be a core group comprising of managers as well as a technical team committed to the management and protection of sexually abused children.

The influence of informed consent content on study participants' contraceptive knowledge and concerns.

Little is known about how the information presented in the informed consent process influences study outcomes among participants. This study examines the influence of informed consent content on reported baseline contraceptive knowledge and concerns among two groups of HIV-serodiscordant and seroconcordant HIV-positive couples enrolled in research projects at an HIV research center in Lusaka, Zambia. We found significant differences in the reporting of contraceptive knowledge and concerns between couples viewing consent materials that included detailed information about contraception and those viewing consent materials that lacked the detailed information. We conclude that the design of informed consent materials should strike a balance between ensuring that participants give truly informed consent and educating participants in ways that do not compromise the assessment of the impact of behavioral interventions.

Closing gaps in antiretroviral therapy access: human immunodeficiency virus-associated dementia screening instruments for non-physician healthcare workers.

Human immunodeficiency virus-associated dementia (HIV-D) is an indication for antiretroviral therapy (ART), but HIV-D is not routinely screened for in ART clinics in sub-Saharan Africa. Given the dearth of physicians in sub-Saharan Africa, enabling non-physician healthcare workers to identify HIV-D is crucial for early treatment initiation and preventing chronic neurologic disability. Non-physician healthcare workers administered locally adapted screening instruments to 48 persons living with acquired immunodeficiency syndrome (PLWAs), and 15 healthy comparison persons provided normative data. Stage IV PLWAs performed worse than the comparison group on all tests. Overall, 24 (50%) of 48 PLWAs had significant cognitive impairment. Among HIV staging categories, 1 stage II (33%), 6 stage III (42%), and 17 stage IV (55%) patients were identified as cognitively impaired. Our pilot study indicates that screening instruments used by non-physician healthcare workers can identify cognitive impairment in PLWAs and may facilitate appropriate initiation of ART in resource-poor settings.

What the better half is thinking: A comparison of men's and women's responses and agreement between spouses regarding reported sexual and reproductive behaviors in Rwanda.

OBJECTIVE: To compare responses to a sexual behavioral survey of spouses in cohabiting heterosexual relationships in Kigali, Rwanda. DESIGN: Cross-sectional survey. METHODS: Husbands and wives in 779 cohabiting couples were interviewed separately with parallel questionnaires. Participants were recruited from a three-year old cohort of 1458 antenatal clinic attendees enrolled in a prospective study in 1988. Analyses compared responses at the gender- and couple-level for agreement and disagreement. RESULTS: Couples were in disagreement more than agreement. Women reported occasionally refusing sex, suggesting condom use, and believing married men were unfaithful. Men reported being in a faithful relationship, greater condom use, and being understanding when wives refused sex. Agreement included relationship characteristics, safety of condoms, and whether condoms had ever been used in the relationship. Disagreement included the preferred timing of next pregnancy, desire for more children, and whether a birth control method was currently used and type of method. CONCLUSIONS: Rwandan husbands and wives differed in sexual behavior and reproductive-related topics. Couple-level reporting provides the most reliable measure for relationship aspects as couples' agreement cannot be assumed among cohabiting partnerships. Furthermore, HIV prevention programs for couples should incorporate communication skills to encourage couple agreement of HIV-related issues.

Women's experiences living with epilepsy in Zambia.

Epilepsy-associated stigma is a well-recognized phenomenon that adversely impacts the lives of people with epilepsy (PWE). The burden of stigma follows power differentials, with socially and economically disenfranchised groups being particularly susceptible. To guide instrument development for quantitative studies, we conducted a series of focus group discussions among PWE and found that women with epilepsy experienced especially adverse social and economic problems because of epilepsy-associated stigma. The social burden of the disease largely outweighed the medical burden. Women revealed seizure worries related to accidental and intentional injury and the risk of breaking taboos as well as limitations in role fulfillment and extremes of social rejection by family and community. Our findings have implications for access to care and care delivery for vulnerable populations with epilepsy.

The socioeconomic status of children with epilepsy in Zambia: implications for long-term health and well-being.

Epilepsy is a highly stigmatized disorder in Zambia. Studies indicate that adults with epilepsy in many regions have significantly lower socioeconomic status (SES) than their peers. We conducted a case-control study of Zambian children with epilepsy (CWE) to assess their SES. Ninety-eight pairs of children were recruited (n=196); their mean age was 10.8 years, and 59.7% were male. The comparison group's medical conditions included asthma (54.0%), rheumatic heart disease (26.6%), type 1 diabetes (14.2%), and hypertension (5.2%). Compared with children with nonstigmatized chronic medical conditions, CWE have fewer educational opportunities, more environmental hazards, and poorer food quality and security (all P's<0.05). This deprivation may be related to lost maternal income for mothers who deferred employment so they could remain at home to care for their children. This early deprivation has long-term implications for health and well-being. Health care workers and child advocates need to be aware of the circumstances facing CWE in this region.

Evolution of couples' voluntary counseling and testing for HIV in Lusaka, Zambia.

BACKGROUND: : We describe promotional strategies for couples' voluntary HIV counseling and testing (CVCT) and demographic risk factors for couples in Lusaka, Zambia, where an estimated two thirds of new infections occur in cohabiting couples. PRINCIPAL FINDINGS: : CVCT attendance as a function of promotional strategies is described over a 6-year period. Cross-sectional analyses of risk factors associated with HIV in men, women, and couples are presented. Community workers (CWs) recruited from couples seeking CVCT promoted testing in their communities. Attendance dropped when CW outreach ended, despite continued mass media advertisements. In Lusaka, 51% of 8500 cohabiting couples who sought HIV testing were concordant negative for HIV (MF) and 26% concordant positive (MF); 23% had 1 HIV-positive partner and one HIV-negative partner, with 11% HIV-positive man/HIV-negative woman (MF) and 12% HIV-negative man/HIV-positive woman (FM). HIV infection was associated with men's age 30 to 39, women's age 25 to 34, duration of union <3 years, and number of children <2. Even among couples with either 1 or 2 or no risk factors, HIV prevalence was 45% and 29%, respectively. CONCLUSIONS: : Many married African adults do not have high-risk profiles, nor realize that only 1 may be HIV positive. Active and sustained promotion is needed to encourage all couples to be jointly tested and counseled.

Enrollment and retention of HIV discordant couples in Lusaka, Zambia.

BACKGROUND: Biased enrollment and attrition compromise the power of clinical trials and limit generalizability of findings. We identify predictors of enrollment and retention for HIV-discordant couples enrolled in prospective studies in Zambia. PRINCIPAL FINDINGS: A total of 1995 discordant couples were invited to enroll. Predictors of nonenrollment, loss to follow-up, and missed appointments were evaluated using multivariate models. MF couples were more likely to be eligible and to enroll and less likely to be lost to follow-up than FM couples. Substantial losses to follow-up occurred between testing and enrollment (21.3% of MF and 28.1% of FM) and between enrollment and the first follow-up visit (24.9% of MF and 30.5% of FM). Among MF and FM couples, residence far from the clinic, younger age, and women's age at first intercourse

The relationship between alcohol consumption and unprotected sex among known HIV-discordant couples in Rwanda and Zambia.

Although alcohol abuse is highly prevalent in many countries in sub-Saharan Africa, little is known about the relationship between alcohol consumption and risky sexual behavior in these settings. An understanding of this relationship is particularly important given the high prevalence of HIV that exists in many of these countries. This study analyzes data collected from members of cohabiting HIV-discordant couples regarding alcohol consumption and self-reported condom use. After controlling for demographic and socioeconomic co-factors, alcohol use by male partners of HIV-discordant couples was associated with self-reported unprotected sex at follow-up. Counseling about alcohol use should be part of HIV testing and counseling programs, particularly among those found to be HIV-positive.

Promotion of couples' voluntary counselling and testing for HIV through influential networks in two African capital cities.

BACKGROUND: Most new HIV infections in Africa are acquired from cohabiting heterosexual partners. Couples' Voluntary Counselling and Testing (CVCT) is an effective prevention strategy for this group. We present our experience with a community-based program for the promotion of CVCT in Kigali, Rwanda and Lusaka, Zambia. METHODS: Influence Network Agents (INAs) from the health, religious, non-governmental, and private sectors were trained to invite couples for CVCT. Predictors of successful promotion were identified using a multi-level hierarchical analysis. RESULTS: In 4 months, 9,900 invitations were distributed by 61 INAs, with 1,411 (14.3%) couples requesting CVCT. INAs in Rwanda distributed fewer invitations (2,680 vs. 7,220) and had higher response rates (26.9% vs. 9.6%), than INAs in Zambia. Context of the invitation event, including a discreet location such as the INA's home (OR 3.3-3.4), delivery of the invitation to both partners in the couple (OR 1.6-1.7) or to someone known to the INA (OR 1.7-1.8), and use of public endorsement (OR 1.7-1.8) were stronger predictors of success than INA or couple-level characteristics. CONCLUSION: Predictors of successful CVCT promotion included strategies that can be easily implemented in Africa. As new resources become available for Africans with HIV, CVCT should be broadly implemented as a point of entry for prevention, care and support.

Contraception among HIV concordant and discordant couples in Zambia: a randomized controlled trial.

OBJECTIVES: This study examines the impact of an intervention to promote dual-method contraceptive use among HIV concordant and discordant couples already using condoms for HIV prevention. METHODS: A three-armed randomized, controlled trial was conducted at a voluntary HIV testing and counseling clinic in Lusaka, Zambia; 251 couples were randomized. Control couples received family planning education and referral to an outside clinic for nonbarrier contraceptives, intervention 1 couples received education and offer of contraceptives at the research clinic, and intervention 2 couples received intervention 1 plus a presentation designed to reduce outside pressures to conceive. RESULTS: There was a 3-fold higher contraceptive initiation rate in both intervention arms compared with the control arm. The interventions had no impact on incident pregnancy, largely due to high levels of contraceptive discontinuation and user failure. HIV-positive women who initially selected injectable contraception were less likely to abandon the method and significantly less likely to conceive than other study participants. CONCLUSIONS: Improving access to nonbarrier contraceptives among couples already using condoms for HIV prevention increased dual-method use. Selection of longer-acting injectable contraception was associated with lower pregnancy rates among HIV-positive women. Further research is needed to identify ways to help couples in this population continue to correctly use nonbarrier contraceptives.

Epilepsy-related knowledge, attitudes, and practices among Zambian police officers.

OBJECTIVE: In Zambia, where emergency medical services are very limited, the police are frequently called to the scene for unaccompanied people experiencing seizures or exhibiting disturbed behaviors during a seizure. Police officers receive no formal medical training to manage such encounters. We developed and administered a police-specific survey to assess knowledge, attitudes, and practices (KAP) regarding epilepsy among police officers in Zambia. METHODS: In 2004, a 28-item KAP questionnaire that included queries specific to police encounters with seizures and epilepsy was developed and delivered to a random sample of 200 police officers stationed in Lusaka. Descriptive data were reviewed and open text questions postcoded and categorized. RESULTS: The response rate was 87.5% (n=175). Police were familiar with epilepsy, with 85% having witnessed a seizure. Although 77.1% recognized epilepsy as a brain disorder, almost 20% blamed spirit possession, 13.9% associated epilepsy with witchcraft, and more than half the respondents believed epilepsy is contagious. When asked how they would treat someone brought in for disturbing the peace during a seizure, most police provided supportive or neutral responses, but 8% reported taking harmful actions (arrest, detain, handcuff, restrain), and 14.3% indicated that people with epilepsy in police custody require quarantine. CONCLUSIONS: A significant number of police officers in Zambia lack critical knowledge regarding epilepsy and self-report detrimental actions toward people with seizures. In regions of the developing world where the police provide emergency medical services, police officers need to be a target for educational and social intervention programs.

Zambian health care workers' knowledge, attitudes, beliefs, and practices regarding epilepsy.

OBJECTIVE: Zambia suffers from a physician shortage, leaving the provision of care for those with epilepsy to nonphysician health care workers who may not be adequately trained for this task. These individuals are also important community opinion leaders. Our goal in this study was to determine the knowledge, attitudes, beliefs, and practices of these health care workers with respect to epilepsy. METHODS: Health care workers in urban and rural districts of Zambia completed a self-administered, 48-item questionnaire containing items addressing demographics, personal experience with epilepsy, social tolerance, willingness to provide care, epilepsy care knowledge, and estimates of others' attitudes. Analyses were conducted to assess characteristics associated with more epilepsy care knowledge and social tolerance. RESULTS: The response rate was 92% (n=276). Those who had received both didactic and bedside training (P=0.02) and more recent graduates (P=0.007) had greater knowledge. Greater knowledge was associated with more social tolerance (P=0.005), but having a family member with epilepsy was not (P=0.61). Health care workers were generally willing to provide care to this patient population, but approximately 25% would not allow their child to marry someone with epilepsy and 20% thought people with epilepsy should not marry or hold employment. Respondents reported that people with epilepsy are feared and/or rejected by both their families (75%) and their community (88.8%). CONCLUSIONS: Knowledge gaps exist particularly in acute management and recognition of partial epilepsy. More recent graduates were more knowledgeable, suggesting that curriculum changes instituted in 2000 may be improving care. Health care workers expressed both personal and professional reservations about people with epilepsy marrying. In addition to improving diagnosis and treatment skills, educational programs must address underlying attitudes that may worsen existing stigmatizing trends.