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, PhDUniversity of Massachusetts Medical School

Department of Family Medicine and Community Health

-1

1

3

5

7

9

11

13

15

17

Knowledge

Sample

Norm

14.5

15

15.5

16

16.5

17

17.5

18

18.5

19Mail survey

Office survey

BackgroundAttention-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.

MethodsSubjects:• 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

Survey Instruments: • Brief demographic questionnaire, original to study• ADHD Knowledge and Opinion Survey (AKOS) in English or Spanish

Data Analysis: • 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

Focus Groups: • Bilingual, bicultural facilitator; interested parents• 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.

10

12

14

16

18

20

22

24

26

28

30

32

34

36

38

40

Counselingacceptability

Medicationacceptability

Counselingfeasibility

Spanish language

English language

12th grade or less

Some college

* p=0.05

* p=0.04

*p=0.01

Parenting efficacy

Knowledge Scale

Focus Group Themes

Table 1: Demographic Data

Role of Parents1. 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: Single 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 Professionals1. 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 Systems1. 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

Valid %

Ethnicity

Hispanic/Latino 100

Country of Origin

USA 23.3

Puerto Rico 63.3

Dominican Republic 6.7

Other 6.7

Primary language

English 46.7

Spanish 53.3

Public Assistance

Yes 100

No 0

Education level

12th grade or less 72

Any college 28

Single caregiver

Yes 48.4

No 51.6

Prior ADHD experience

Yes 51.6

No 45.2

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 2.7Sample mean: 7.8 SD 2.7Norm: 11.0 SD 2.4Norm: 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

References1. 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 – 1814. J Attention Disorders June 2003; 6(4): 163 – 175.5. J DB Pediatrics October 2004; 25(5): 311 – 3176. J DB Pediatrics February 2001; 22(1): 60 – 73.7. Journal of Pediatric Psychology 1996; 21(5): 643-578. Power T et al. Homework success for children with ADHD: a family-school intervention program. New York: The Guilford Press, 2001

Summary and ConclusionsSuccesses

1. Quantification of Hispanic, low-income parents’ knowledge, attitudes and opinions about ADHD in relation to national norms, in a pilot study

2. Quantification of the role of demographic variables in parent responses within the study population

3. 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.

Challenges

1. Reading level, complexity of survey2. Recruitment for research participation in a low-income, bilingual

setting3. Need for bilingual, culturally sensitive staff4. Attrition in focus group participation5. Small sample size6. Lack of control group7. Paucity of clinical survey tools to assess parental knowledge and

attitudes about ADHD

Implications for Clinical Practice and Further Research

1. 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.

2. Clinicians should consider acceptability of various treatment modalities, and psychosocial characteristics of individual families when developing care plans.

3. 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