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Shared decision-making, stigma, and child mental health functioning among families referred for primary care-located mental health services.

There is growing emphasis on shared decision making (SDM) to promote family participation in care and improve the quality of child mental health care. Yet, little is known about the relationship of SDM with parental perceptions of child mental health treatment or child mental health functioning. The objectives of this preliminary study were to examine (a) the frequency of perceived SDM with providers among minority parents of children referred to colocated mental health care in a primary care clinic, (b) associations between parent-reported SDM and mental health treatment stigma and child mental health impairment, and (c) differences in SDM among parents of children with various levels of mental health problem severity. Participants were 36 Latino and African American parents of children (ages 2-7 years) who were referred to colocated mental health care for externalizing mental health problems (disruptive, hyperactive, and aggressive behaviors). Parents completed questions assessing their perceptions of SDM with providers, child mental health treatment stigma, child mental health severity, and level of child mental health impairment. Descriptive statistics demonstrated the majority of the sample reported frequent SDM with providers. Correlation coefficients indicated higher SDM was associated with lower stigma regarding mental health treatment and lower parent-perceived child mental health impairment. Analysis of variance showed no significant difference in SDM among parents of children with different parent-reported levels of child mental health severity. Future research should examine the potential of SDM for addressing child mental health treatment stigma and impairment among minority families.

Keywords: patient-provider communication, shared decision making, mental health, stigma, child


The Substance Abuse and Mental Health Services Administration and the American Academy of Pediatrics encourage shared decision making (SDM) to improve the quality of children's mental health care (American Academy of Pediatrics, 2012; Center for Mental Health Services, 2010). SDM is defined as involving the provider and patient in decision making, and information sharing to reach agreement on treatment decisions (Charles, Gafni, & Whelan, 1997). Anticipated benefits of SDM include decreasing negative perceptions of mental health treatment and improving outcomes (Fiks et al., 2012; Zima, Busing, Tang, & Zhang, 2013).

Researchers have linked ineffective communication to racial/ethnic disparities in health care (Ashton et al., 2003). Studies show minority parents experience poorer mental health communication with providers than nonminority parents, as defined by being less likely to discuss mental health concerns (Brown & Wissow, 2008; Wissow et al., 2003). Few studies have examined SDM and mental health functioning among minority children. Preliminary research on SDM and mental health functioning can provide a foundation for longitudinal investigations of SDM and change in minority children's functioning.

It is also important to study the association between mental health treatment stigma and SDM because stigma is linked to unmet mental health needs (Larson et al., 2011; Pescosolido, Martin, Lang, & Olafsdottir, 2008). Stigma is an attribute that leads to a socially discredited status, and can be directed toward mental health services (Mukolo, Heflinger, & Wallston, 2010). Research showing educational interventions reduce stigma suggests maximizing SDM may also be an effective approach. Specifically, effective educational interventions provide accurate information about mental health (Corrigan, Morris, Michaels, Rafacz, & Rusch, 2012). Similar to educational interventions, SDM emphasizes that providers give detailed information about treatment choices in a way to help parents evaluate options. SDM also underscores parents' discussion of their perceptions of treatment choices.

Mental health conditions are most often first identified in primary care (Kelleher, Campo, & Gardner, 2006). However, pediatricians more frequently refer minority children to a mental health specialist compared to nonminority children (Rushton, Bruckman, & Kelleher, 2002). Thus, examining SDM among minority families who have been referred to a mental health specialist is important.

The purpose of this preliminary study was to investigate perceptions of SDM among a convenience sample of low-income minority parents of young children (ages 2-7 years) referred to colocated mental health services in a primary care clinic. Children were referred for externalizing problems, which are defined as disruptive, hyperactive, and aggressive behaviors (Frick & Kimonis, 2005). We examined (1) the frequency of SDM, (2) the relationships of SDM with child mental health treatment stigma and impairment, and (3) whether parents of children with various levels of externalizing problem severity report different levels of SDM. We hypothesized (1) more frequent SDM would be associated with lower treatment stigma; (2) more frequent SDM would be associated with lower impairment; and (3) parents who report their children's behavior as mild, moderate, or severe would differ in ratings of SDM. We expected higher SDM ratings among parents of children with lower levels of severity compared with higher severity.



The study was conducted in a pediatric primary care clinic that provides colocated mental health services to families who are referred by one of the clinic's pediatricians. A psychologist and psychiatrist provide mental health services. Families are predominantly from minority backgrounds (38% African American and 47% Latino) and have public insurance (80%).


Eligible participants were African American and Latino parents of children (age 2-7 years) who were referred to colocated services as a result of externalizing problems between April 2011 and March 2012. Inclusion criteria included current endorsement of an externalizing problem and English as the primary language spoken in the home.

Pediatricians referred 64 young children during the study period. Investigators reached 52 (81%) parents for recruitment. Contacted families and those who were not contacted did not differ by race/ethnicity, child age, child gender, or whether they adhered to the referral. Thirty-six parents were eligible and agreed to participate (69% of contacted families). All parents were female. The parents were primarily African American (86%), and 14% were Latino. Their children were mostly males (64%). Most parents adhered to the mental health referral (72%).


Demographics. Primary care staff provided researchers with the child's race/ethnicity, gender, age, and referral adherence.

Shared decision-making. Table 1 shows the four questions that assess SDM in the National Survey of Children with Special Health Care Needs (NS-CSHCN; Child and Adolescent Health Measurement Initiative [CAHMI], 2012). High internal consistency has been reported (.87). Different information is assessed by each item (item-total correlations range = .59-69; Richard LeDonne, personal communication, July 12, 2012). Parents respond to each question on a 4-point Likert scale; 1 (never) - 4 (always). We calculated a total summed score (range = 4-16).

Child mental health treatment stigma.

We modified four questions that assess mental health treatment stigma from the National Stigma Study-Children module of the 2002 General Social Survey (Pescosolido, 2007). We adapted the questions to assess stigma regarding externalizing problem treatment, and conducted cognitive testing with 10 parents (5 African American and 5 Latino). Response categories range from 1 (strongly agree) to 4 (strongly disagree). A total score is obtained by calculating the average. Higher scores indicate lower stigma. The current study internal consistency coefficient was .66, and is similar to the original items' coefficient (.68) (Pescosolido, Perry, Martin, McLeod, & Jensen, 2007).

Child externalizing behavior severity. We modified a two-part question from the NSCSHCN (CAHMI, 2012) to assess severity of externalizing problems and conducted cognitive testing with 10 parents. First, parents responded "yes" or "no" to: "Does your child have problems with their behavior, attention, or a high activity level/hyperactivity?" Parents who responded "yes," were asked "Are these problems mild, moderate, or severe?" Inclusion criteria for the current study included an affirmative response to the former question. Parents were categorized as having a child with mild, moderate, or severe externalizing problems.

Child externalizing behavior impairment. We modified four questions from the NSCSHCN (CAHMI, 2012) to assess the number of child mental health impairments from externalizing problems and conducted cognitive testing with 10 parents. Parental responses to each question were coded as 0 or 1 for no or yes responses, respectively. A summed total score was calculated (range 0-4).


Primary care staff provided the researchers with a list of children referred to mental health services between April 2011 and March 2012. Researchers obtained parental verbal consent via telephone. Research staff reviewed children's electronic medical records to determine whether eligibility criteria were met (English language, externalizing problem referral). Researchers contacted parents via phone to ensure eligibility and complete the study questions between June 2012 and October 2012. Participants received $25 for participation. The Institutional Review Board approved the study procedures.

Data Analysis

Analyses were conducted using SPSS Version 18. Median and mean scores, skewness, and percentages were calculated to characterize study variables. Pearson bivariate correlations were conducted to examine associations between SDM, stigma, and externalizing behavior impairment. Analysis of variance examined whether parents of children with mild, moderate, or severe problems report different SDM.


Descriptive Statistics

The median SDM score was 14.5 (range = 6-16; SD = 2.61). SDM scores were negatively skewed (skewness = 1.41), indicating the majority of the sample endorsed frequent SDM (see Table 1). Table 2 shows the mean stigma and number of impairments for the study sample, as well as the percentages of parent who reported their child as having mild moderate behavior, or severe externalizing behavior.

Associations Between SDM, Stigma, Impairment, and Severity

Pearson bivariate correlation analyses indicated greater SDM was moderately and significantly associated with lower mental health treatment stigma (r = .39; p = .02). Greater SDM was also moderately and significantly associated with lower impairment (r = -.34; p = .04). Finally, a significant difference in SDM was not found, F(2, 33) = 2.30, p = .12 among children with mild (M = 14.36, SD = 1.91), moderate (M = 14.25, SD = 2.05), or severe (.M = 12.22, SD = 3.70), externalizing behavior.


This study provides preliminary findings on perceptions of shared decision making (SDM) among minority parents of children referred to colocated mental health services in primary care. As hypothesized, more frequent SDM was associated with lower mental health treatment stigma and lower child mental health impairment. Contrary to the study hypothesis, SDM did not vary among parents of children with different levels of mental health problem severity.

The majority of parents in the study perceived frequent SDM with providers. This finding is consistent with a previous study of a diverse nationally representative sample of children with ADHD, in which more than 80% of parents reported intermediate to high SDM (Fiks, Localio, Alessandrini, Asch, & Guevara, 2010). However, a previous study that used video-taped interactions to measure SDM showed low levels of SDM, and lower SDM among minority families relative to nonminority families of children with ADHD (Brinkman et al., 2011). The current study findings may be different from the previous study using an objective SDM measure because objective and parent-report measures may not be highly correlated. Research in adult care has shown a weak association between patient-reported and objective measures of SDM (Martin, Jahng, Golin, & DiMatteo, 2003). Parental social desirability or expectations for care may influence SDM responses, which may not align with objective measures (Street, Krupat, Bell, Kravitz, & Haidet, 2003). Future studies should examine the association between perceptual and objective SDM measures, and each of their association with minority outcomes.

Our literature review suggests that this is the first study to examine SDM and mental health stigma. Our finding is in line with researchers' suggestions about the benefit of SDM for decreasing negative treatment perceptions (Fiks et al., 2012; Zima et al., 2013). As predicted, higher SDM was also associated with lower mental health impairment in our sample of minority parents. Our hypothesis was based on findings from a previous study showing that enhancement in primary care providers' communication predicted improvement in children's mental health impairment among a sample of minority and nonminority families (Wissow et al., 2011). Our findings call for future longitudinal examination of the association between SDM and changes in mental health impairment among minority children.

Previous studies of patient-provider communication included families who had visits with pediatricians in settings without colocated mental health specialists (Brinkman et al., 2011; Wissow et al., 2008; Wissow et al., 2011). In the current study, assessment of SDM reports the experience of parents who had visits with pediatricians with colocated specialists. Colocated specialists may enhance the benefits of SDM because they might facilitate access to and education about different mental health treatment options. Thus, future research should examine the benefits of SDM among pediatricians with and without colocated specialists.

We anticipated that parents of children with varying levels of mental health severity would report different SDM. This hypothesis was based on a previous intervention study showing increases in provider communication predict decreases in child mental health symptoms and impairment (Wissow et al., 2011). It is important to highlight the small sample size in the current study and thus the need to interpret the results with caution. Future study should reexamine SDM and child mental health severity in a larger sample.

Limitations of the current study include the small sample size, convenience sample, and that the parents were primarily African American and English-speaking, which limit generalizability to the larger minority population. Specifically, the sample in the current study did not allow a well-conducted examination of the association between SDM and primary household language among Latino parents. Furthermore, we are unable to determine whether SDM influences stigma or impairment because all data were collected at one point in time. The strength of this study is the examination of SDM among minority families who mostly received colocated mental health services in primary care. Our findings that greater SDM is moderately associated with lower stigma and impairment call for longitudinal study to investigate causality. Studies can inform interventions to improve minority children's mental health care quality and outcomes.

DOI: 10.1037/fsh0000004

Received April 8, 2013

Revision received August 29, 2013

Accepted August 30, 2013


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Ashley M. Butler, PhD

Baylor College of Medicine

This article was published Online First January 20, 2014.

Correspondence concerning this article should be addressed to Ashley M. Butler, PhD, Department of Pediatrics, Baylor College of Medicine, Houston, TX 77030. E-mail:
Table 1
Percentages of Shared Decision Making Responses

                                              Response (%)

             Item                 Never   Sometimes   Usually   Always

1. During the past 12 months,
   how often did [child]'s
   doctors or other health care
   providers discuss with you
   the range of options to
   consider for [his/her]
   health care or treatment?
   Would you say never,
   sometimes, usually, or
   always?                          3        16         31        50
2. How often did they encourage
   you to ask questions or
   raise concerns?                  3        14         11        72
3. How often did they make it
   easy for you to ask
   questions or raise concerns?     0        14          8        78
4. How often did they consider
   and respect what health care
   and treatment choices you
   thought would work best for
   [child]?                         6        19         11        64

Note. Data Source: National Center For Health Statistics and Maternal
and Child Health Bureau, National Survey of Children With Special
Health Care Needs, 2009/2010.

Table 2
Mean Stigma and Impairment Scores, and Percentages
of Severity Ratings

           Variable               M or %    SD     Range

Mental Health Treatment Stigma     3.12     .66   1.50-4.0
Number of Impairments from
  Externalizing Behavior           1.42    1.40     0-4
Mild Externalizing Behavior
  Rating                           31%      --       --
Moderate Externalizing Behavior
  Rating                           44%      --       --
Severe Externalizing Behavior
  Rating                           25%      --       --
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Title Annotation:BRIEF REPORT
Author:Butler, Ashley M.
Publication:Families, Systems & Health
Article Type:Report
Date:Mar 1, 2014
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