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HISPANIC LOW-INCOME PARENTS’ ATTITUDES TOWARD TREATMENT OF ADHD IN A COMMUNITY HEALTH CENTER Valerie F. Pietry, MD, MS; Gonzalo Bacigalupe, EdD; Heather-Lyn Haley, PhD University of Massachusetts Medical School Department of Family Medicine and Community Health Background Attention-Deficit / Hyperactivity Disorder has a prevalence of 4 to 12% among school-aged children. However, studies describe underdiagnosis and undertreatment of ADHD among Hispanic populations. Parental factors have been shown to impact ADHD treatment outcomes. Qualitative studies of parental attitudes and beliefs about ADHD in Latino populations are limited and suggest a need to investigate divergent findings. Quantifying Hispanic parental knowledge and attitudes about ADHD treatment could lead to more culturally-appropriate interventions, and a reduction of health disparities in the management of ADHD in underserved Latino families. The goal of this study was to employ an existing survey tool, normed in a primarily middle-income, non-Hispanic, tertiary care population, to describe parental knowledge, attitudes and opinions about ADHD and its treatment in a Hispanic, low-income, primary care population, and to evaluate the relevance of this instrument to the study population’s treatment concerns. Additionally, we evaluated the association between the study population’s demographic factors and survey responses.
32 Spanish- and English-speaking parents or caregivers
Self-identifyied as Hispanic or Latino
Presented with their children for care at the Family Health Center of Worcester’s ADHD Clinic
Recruited from the Clinic waiting room and by mail
Brief demographic questionnaire, original to study
ADHD Knowledge and Opinion Survey (AKOS) in English or Spanish
Survey data collated in EpiInfo and analyzed in SPSS 14.0
Means and 95% CI of the sample population’s scores on AKOS Knowledge, Medication Acceptability, Counseling Acceptability and Counseling Feasibility subscales compared to published norms
Differences according to preferred language, age, country of origin, length of time in US, education level, number of caregivers at home, level of experience with ADHD, and public assistance status were evaluated using ANOVAs
Internal variance within the cohort’s Parenting Efficacy subscores (not normed) also assessed
Questions developed using grounded theory, addressing survey’s ease of use, reactions to preliminary results, themes omitted from survey that may be relevant to Hispanic parents of low income
Content analysis used to summarize and interpret focus group data.
All 32 parents were female, described themselves as Hispanic or Latino, ranging in age from 22 to 45 years, with a mean age of 33 years. Other demographic data are summarized in Table 1. * p=0.05 * p=0.04 *p=0.01 Parenting efficacy Knowledge Scale Focus Group Themes Table 1: Demographic Data
Role of Parents
Need for parental knowledge and mutual support: Parents acknowledge a need to learn more about ADHD as individuals and in groups, while at the same time see this as interrelated with the importance of providers’ recognition of parents’ pride as “experts” in their children’s lives.
2. Expression of love: Parents emphasize the importance of demonstrating love toward one’s child a legitimate contributor to the behavioral management of ADHD.
3. The absent parent: S ingle parenthood is identified as having its own challenges with respect to raising a child with ADHD in the absence of a partner. Although some respondents blamed the father’s absence, it may be that, rather than being the origin of the illness, the lack of a father figure is thought to exacerbate the symptoms and become the source of other symptoms like aggression, depression, defiant behavior, etc.
Role of Professionals 1. Medication: In response to the use of stimulant medications and the effects on their children, parents describe a mixture of feelings of empowerment and powerlessness, experiencing relief when they perceive positive effects on their children’s behavior, as well as a sense of distress when medications wear off, are in short supply or cause undesired side effects. 2. Trust based on results: Positive results in children’s behavior transcend cultural barriers and translate into trust in the provider. 3. Counseling: Parents may be seen as exploring the contribution that counseling makes to their children’s treatment plans—making sense of the benefits it offers for their particular situations. 4. Teachers and schools: Teachers and school personnel may be the first to identify an attention problem, and are sometimes construed as having authority as diagnosticians of ADHD, and judges of treatment efficacy. 5. Cultural competence and family-centered medical home: Language need not be perceived as a barrier if the medical home provides culturally-appropriate services. Parents are willing to work with a medical system that they perceive is earnestly trying to meet their needs. Role of Family Systems 1. Beliefs about meaning of “hereditary”: Parents view family histories of ADHD and trauma as interrelated etiologic factors. 2. Influence of family members: Extended family members contribute their opinions about ADHD to parents, whether appreciated or not. The impact of this may be enhanced when housing arrangements force cohabitation with extended family. Parent Comments : “ We also need someone who can inform the parents, especially the Latinos; many parents are afraid, or they do not know the language.” “… the children, they need the father, them as boys they need the father…the boys want a masculine figure around.” Figure 1 Figure 3 Comparison of published AKOS norms with the study population’s subscale scores yielded the following associations, suggesting both differences between a low-income, Hispanic parental cohort and the general population, and diversity within the cohort. Knowledge score for the entire sample was significantly lower than the norm (P<0.001), independent of demographic subgroup shown in Table 1. Sample mean: 7.8 SD 2.7 Norm: 11.0 SD 2.4 Figure 2 Opinion Factors: Significant demographic correlations Figure 3 Counseling Acceptability score was significantly higher in the Spanish vs. English language group. (P = 0.05.). Medication Acceptability and Counseling Feasibility, but not Counseling Acceptability scores, were significantly higher for parents with high school education or less (P = 0.04, P = 0.016, respectively). Parenting efficacy scores were significantly higher among parents who completed a mail-in rather than an office-based survey (P = 0.04). *p<0.04 Results References 1. Arch Gen Psychiatry 1999; 56: 1088 – 1096. 2. Can J Psychiatry 1999; 44: 1043 – 1048. 3. General Hospital Psychiatry May-June 2007; 29(3): 179 – 181 4. J Attention Disorders June 2003; 6(4): 163 – 175. 5. J DB Pediatrics October 2004; 25(5): 311 – 317 6. J DB Pediatrics February 2001; 22(1): 60 – 73. 7. Journal of Pediatric Psychology 1996; 21(5): 643-57 8. Power T et al. Homework success for children with ADHD: a family-school intervention program. New York: The Guilford Press, 2001 Summary and Conclusions
Quantification of Hispanic, low-income parents’ knowledge, attitudes and opinions about ADHD in relation to national norms, in a pilot study
Quantification of the role of demographic variables in parent responses within the study population
Description of additional psychosocial factors important to the study population regarding ADHD and its treatment, some borne out by prior research and others not previously documented
Acknowledgements This study was supported by a grant from the University of Massachusetts Commonwealth Medicine Mini-Grant Program. The authors greatly appreciate the cooperative spirit of the parents and caregivers who took part in the study, the support of the FHC ADHD Clinic staff, and the assistance of Dr. Kenneth Fletcher and Dr. Daniel Smith.
Reading level, complexity of survey
Recruitment for research participation in a low-income, bilingual setting
Need for bilingual, culturally sensitive staff
Attrition in focus group participation
Small sample size
Lack of control group
Paucity of clinical survey tools to assess parental knowledge and attitudes about ADHD
Implications for Clinical Practice and Further Research
Hispanic, low-income parents may experience knowledge disparities regarding ADHD, with self-identified needs for parental education and support. Multimodal treatment programs should be tailored to address parental needs individually and in groups, in a culturally appropriate manner.
Clinicians should consider acceptability of various treatment modalities, and psychosocial characteristics of individual families when developing care plans.
Further study is needed to validate findings in a larger sample, with a non-Hispanic, low-income control group. Further refinement of assessment tools for parental knowledge and attitudes may be of value.
p < 0.001 0 No 45.2 No 51.6 Yes Prior ADHD experience 51.6 No 48.4 Yes Single caregiver 28 Any college 72 12 th grade or less Education level 100 Yes Public Assistance 53.3 Spanish 46.7 English Primary language 6.7 Other 6.7 Dominican Republic 63.3 Puerto Rico 23.3 USA Country of Origin 100 Hispanic/Latino Ethnicity Valid %