Families, Systems, & Health 2014, Vol. 32, No. 1, 116 –121
© 2014 American Psychological Association 1091-7527/14/$12.00 DOI: 10.1037/fsh0000004
BRIEF REPORT
Shared Decision-Making, Stigma, and Child Mental Health Functioning Among Families Referred for Primary Care–Located Mental Health Services
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
Ashley M. Butler, PhD Baylor College of Medicine 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,
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: [email protected]
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.
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This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
SHARED DECISION-MAKING AND CHILD MENTAL HEALTH
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.
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Method Setting 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%). Participants 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. Thirtysix 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%). Measures 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
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BUTLER
Table 1 Percentages of Shared Decision Making Responses Response (%)
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
Item
Never
Sometimes
Usually
Always
3
16
31
50
3
14
11
72
0
14
8
78
6
19
11
64
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? 2. How often did they encourage you to ask questions or raise concerns? 3. How often did they make it easy for you to ask questions or raise concerns? 4. How often did they consider and respect what health care and treatment choices you thought would work best for [child]?
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.
(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). Procedures 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.
SHARED DECISION-MAKING AND CHILD MENTAL HEALTH
Results
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
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. Discussion 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 impairTable 2 Mean Stigma and Impairment Scores, and Percentages of Severity Ratings Variable Mental Health Treatment Stigma Number of Impairments from Externalizing Behavior Mild Externalizing Behavior Rating Moderate Externalizing Behavior Rating Severe Externalizing Behavior Rating
M or % SD 3.12
Range
.66 1.50–4.0
1.42
1.40
0–4
31%
—
—
44%
—
—
25%
—
—
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ment. 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;
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
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BUTLER
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. References American Academy of Pediatrics, Committee on Hospital Care and Institute for Patient and Family Centered Care. Patient- and family-centered care and the pediatrician’s role. Pediatrics, 129:394 – 404, 2012. doi:10.1542/peds.2011-3084 Ashton, C. M., Haidet, P., Paterniti, D. A., Collins, T. C., Gordon, H. S., O’Malley, K., . . . Street,
R. L., Jr. (2003). Racial and ethnic disparities in the use of health services: Bias, preferences, or poor communication? Journal of General Internal Medicine, 18, 146 –152. doi:10.1046/j.1525-1497 .2003.20532.x Brinkman, W. B., Hartl, J., Rawe, L. M., Sucharew, H., Britto, M. T., & Epstein, J. N. (2011). Physicians’ shared decision-making behaviors in attention-deficit/hyperactivity disorder care. Archives De Pediatrie Adolesc Med, 165, 1013–1019. doi: 10.1001/archpediatrics.2011.154 Brown, J. D., & Wissow, L. S. (2008). Disagreement in parent and primary care provider reports of mental health counseling. Pediatrics, 122, 1204 – 1211. doi:10.1542/peds.2007-3495 Center for Mental Health Services, & S.A.M.H.S.A. (2010). Shared decision-making in mental health care: practice, research, and future directions. Rockville, MD. Charles, C., Gafni, A., & Whelan, T. (1997). Shared decision-making in the medical encounter: What does it mean? (or it takes at least two to tango). Social Science & Medicine, 44, 681– 692. doi: 10.1016/S0277-9536(96)00221-3 Child and Adolescent Health Measurement Initiative (CAHMI). (2012). 2009 –2010 NS-CSHCN Indicator and Outcome Variables SPSS Codebook (Version 1). Data Resource Center for Child and Adolescent Health. Retrieved from www.child healthdata.org/ Corrigan, P. W., Morris, S. B., Michaels, P. J., Rafacz, J. D., & Rusch, N. (2012). Challenging the public stigma of mental illness: A meta-analysis of outcome studies. Psychiatric Services, 63, 963– 973. doi:10.1176/appi.ps.201100529 Fiks, A. G., Localio, A. R., Alessandrini, E. A., Asch, D. A., & Guevara, J. P. (2010). Shared decisionmaking in pediatrics: A national perspective. Pediatrics, 126, 306 –314. doi:10.1542/peds.20100526 Fiks, A. G., Mayne, S., Hughes, C. C., Debartolo, E., Behrens, C., Guevara, J. P., & Power, T. (2012). Development of an instrument to measure parents’ preferences and goals for the treatment of attention deficit-hyperactivity disorder. Academic Pediatrics, 12, 445– 455. doi:10.1016/j.acap.2012.04.009 Frick, P. J., & Kimonis, E. R. (2005). Externalizing disorders of childhood and adolescence. In J. E. Maddox & B. A. Winstead (Eds.), Psychopathology: Foundations for a contemporary understanding (pp. 363–392). Mahwah, NJ: Earlbaum. Kelleher, K. J., Campo, J. V., & Gardner, W. P. (2006). Management of pediatric mental disorders in primary care: Where are we now and where are we going? Current Opinion in Pediatrics, 18, 649 – 653. doi:10.1097/MOP.0b013e3280106a76 Larson, J., Dosreis, S., Stewart, M., Kushner, R., Frosch, E., & Solomon, B. (2011). Barriers to
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SHARED DECISION-MAKING AND CHILD MENTAL HEALTH
mental health care for urban, lower income families referred from pediatric primary care. Administration and Policy in Mental Health. doi: 10.1007/s10488-011-0389-1 Martin, L. R., Jahng, K. H., Golin, C. E., & DiMatteo, M. R. (2003). Physician facilitation of patient involvement in care: Correspondence between patient and observer reports. Behavioral Medicine, 28, 159 –164. doi:10.1080/08964280309596054 Mukolo, A., Heflinger, C. A., & Wallston, K. A. (2010). The stigma of childhood mental disorders: A conceptual framework. Journal of the American Academy of Child and Adolescent Psychiatry, 49, 92–103; quiz 198. Pescosolido, B. A. (2007). Culture, children, and mental health treatment: Special section on the national stigma study-children. Psychiatric Services, 58, 611– 612. doi:10.1176/appi.ps.58.5.611 Pescosolido, B. A., Martin, J. K., Lang, A., & Olafsdottir, S. (2008). Rethinking theoretical approaches to stigma: A Framework Integrating Normative Influences on Stigma (FINIS). Social Science & Medicine, 67, 431– 440. doi:10.1016/j .socscimed.2008.03.018 Pescosolido, B. A., Perry, B. L., Martin, J. K., McLeod, J. D., & Jensen, P. S. (2007). Stigmatizing attitudes and beliefs about treatment and psychiatric medications for children with mental illness. Psychiatric Services, 58, 613– 618. doi: 10.1176/appi.ps.58.5.613 Rushton, J., Bruckman, D., & Kelleher, K. (2002). Primary care referral of children with psychosocial problems. Archives of Pediatrics and Adolescent Medicine, 156, 592–598. doi:10.1001/archpedi .156.6.592
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Street, R. L., Jr., Krupat, E., Bell, R. A., Kravitz, R. L., & Haidet, P. (2003). Beliefs about control in the physician-patient relationship: Effect on communication in medical encounters. Journal of General Internal Medicine, 18, 609 – 616. doi:10.1046/ j.1525-1497.2003.20749.x Wissow, L., Gadomski, A., Roter, D., Larson, S., Brown, J., Zachary, C., . . . Wang, M. C. (2008). Improving child and parent mental health in primary care: A cluster-randomized trial of communication skills training. Pediatrics, 121, 266 –275. doi:10.1542/peds.2007-0418 Wissow, L., Gadomski, A., Roter, D., Larson, S., Lewis, B., & Brown, J. (2011). Aspects of mental health communication skills training that predict parent and child outcomes in pediatric primary care. Patient Education and Counseling, 82, 226 – 232. doi:10.1016/j.pec.2010.03.019 Wissow, L., Roter, D., Wang, M. C., Hwang, W. T., Luo, X., . . . Project, S. H. (2003). Longitudinal care improves disclosure of psychosocial information. Archives of Pediatric and Adolescent Medicine, 157, 419 – 424. doi:10.1001/archpedi.157.5 .419 Zima, B. T., Bussing, R., Tang, L., & Zhang, L. (2013). Do parent perceptions predict continuity of publicly funded care for attention-deficit/hyperactivity disorder? Pediatrics, 131, S50 –59. doi: 10.1542/peds.2012-1427f Received April 8, 2013 Revision received August 29, 2013 Accepted August 30, 2013 䡲
© 2014 American Psychological Association 1091-7527/14/$12.00 DOI: 10.1037/fsh0000004
BRIEF REPORT
Shared Decision-Making, Stigma, and Child Mental Health Functioning Among Families Referred for Primary Care–Located Mental Health Services
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
Ashley M. Butler, PhD Baylor College of Medicine 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,
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: [email protected]
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.
116
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
SHARED DECISION-MAKING AND CHILD MENTAL HEALTH
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.
117
Method Setting 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%). Participants 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. Thirtysix 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%). Measures 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
118
BUTLER
Table 1 Percentages of Shared Decision Making Responses Response (%)
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
Item
Never
Sometimes
Usually
Always
3
16
31
50
3
14
11
72
0
14
8
78
6
19
11
64
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? 2. How often did they encourage you to ask questions or raise concerns? 3. How often did they make it easy for you to ask questions or raise concerns? 4. How often did they consider and respect what health care and treatment choices you thought would work best for [child]?
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.
(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). Procedures 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.
SHARED DECISION-MAKING AND CHILD MENTAL HEALTH
Results
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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. Discussion 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 impairTable 2 Mean Stigma and Impairment Scores, and Percentages of Severity Ratings Variable Mental Health Treatment Stigma Number of Impairments from Externalizing Behavior Mild Externalizing Behavior Rating Moderate Externalizing Behavior Rating Severe Externalizing Behavior Rating
M or % SD 3.12
Range
.66 1.50–4.0
1.42
1.40
0–4
31%
—
—
44%
—
—
25%
—
—
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ment. 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;
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BUTLER
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. References American Academy of Pediatrics, Committee on Hospital Care and Institute for Patient and Family Centered Care. Patient- and family-centered care and the pediatrician’s role. Pediatrics, 129:394 – 404, 2012. doi:10.1542/peds.2011-3084 Ashton, C. M., Haidet, P., Paterniti, D. A., Collins, T. C., Gordon, H. S., O’Malley, K., . . . Street,
R. L., Jr. (2003). Racial and ethnic disparities in the use of health services: Bias, preferences, or poor communication? Journal of General Internal Medicine, 18, 146 –152. doi:10.1046/j.1525-1497 .2003.20532.x Brinkman, W. B., Hartl, J., Rawe, L. M., Sucharew, H., Britto, M. T., & Epstein, J. N. (2011). Physicians’ shared decision-making behaviors in attention-deficit/hyperactivity disorder care. Archives De Pediatrie Adolesc Med, 165, 1013–1019. doi: 10.1001/archpediatrics.2011.154 Brown, J. D., & Wissow, L. S. (2008). Disagreement in parent and primary care provider reports of mental health counseling. Pediatrics, 122, 1204 – 1211. doi:10.1542/peds.2007-3495 Center for Mental Health Services, & S.A.M.H.S.A. (2010). Shared decision-making in mental health care: practice, research, and future directions. Rockville, MD. Charles, C., Gafni, A., & Whelan, T. (1997). Shared decision-making in the medical encounter: What does it mean? (or it takes at least two to tango). Social Science & Medicine, 44, 681– 692. doi: 10.1016/S0277-9536(96)00221-3 Child and Adolescent Health Measurement Initiative (CAHMI). (2012). 2009 –2010 NS-CSHCN Indicator and Outcome Variables SPSS Codebook (Version 1). Data Resource Center for Child and Adolescent Health. Retrieved from www.child healthdata.org/ Corrigan, P. W., Morris, S. B., Michaels, P. J., Rafacz, J. D., & Rusch, N. (2012). Challenging the public stigma of mental illness: A meta-analysis of outcome studies. Psychiatric Services, 63, 963– 973. doi:10.1176/appi.ps.201100529 Fiks, A. G., Localio, A. R., Alessandrini, E. A., Asch, D. A., & Guevara, J. P. (2010). Shared decisionmaking in pediatrics: A national perspective. Pediatrics, 126, 306 –314. doi:10.1542/peds.20100526 Fiks, A. G., Mayne, S., Hughes, C. C., Debartolo, E., Behrens, C., Guevara, J. P., & Power, T. (2012). Development of an instrument to measure parents’ preferences and goals for the treatment of attention deficit-hyperactivity disorder. Academic Pediatrics, 12, 445– 455. doi:10.1016/j.acap.2012.04.009 Frick, P. J., & Kimonis, E. R. (2005). Externalizing disorders of childhood and adolescence. In J. E. Maddox & B. A. Winstead (Eds.), Psychopathology: Foundations for a contemporary understanding (pp. 363–392). Mahwah, NJ: Earlbaum. Kelleher, K. J., Campo, J. V., & Gardner, W. P. (2006). Management of pediatric mental disorders in primary care: Where are we now and where are we going? Current Opinion in Pediatrics, 18, 649 – 653. doi:10.1097/MOP.0b013e3280106a76 Larson, J., Dosreis, S., Stewart, M., Kushner, R., Frosch, E., & Solomon, B. (2011). Barriers to
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SHARED DECISION-MAKING AND CHILD MENTAL HEALTH
mental health care for urban, lower income families referred from pediatric primary care. Administration and Policy in Mental Health. doi: 10.1007/s10488-011-0389-1 Martin, L. R., Jahng, K. H., Golin, C. E., & DiMatteo, M. R. (2003). Physician facilitation of patient involvement in care: Correspondence between patient and observer reports. Behavioral Medicine, 28, 159 –164. doi:10.1080/08964280309596054 Mukolo, A., Heflinger, C. A., & Wallston, K. A. (2010). The stigma of childhood mental disorders: A conceptual framework. Journal of the American Academy of Child and Adolescent Psychiatry, 49, 92–103; quiz 198. Pescosolido, B. A. (2007). Culture, children, and mental health treatment: Special section on the national stigma study-children. Psychiatric Services, 58, 611– 612. doi:10.1176/appi.ps.58.5.611 Pescosolido, B. A., Martin, J. K., Lang, A., & Olafsdottir, S. (2008). Rethinking theoretical approaches to stigma: A Framework Integrating Normative Influences on Stigma (FINIS). Social Science & Medicine, 67, 431– 440. doi:10.1016/j .socscimed.2008.03.018 Pescosolido, B. A., Perry, B. L., Martin, J. K., McLeod, J. D., & Jensen, P. S. (2007). Stigmatizing attitudes and beliefs about treatment and psychiatric medications for children with mental illness. Psychiatric Services, 58, 613– 618. doi: 10.1176/appi.ps.58.5.613 Rushton, J., Bruckman, D., & Kelleher, K. (2002). Primary care referral of children with psychosocial problems. Archives of Pediatrics and Adolescent Medicine, 156, 592–598. doi:10.1001/archpedi .156.6.592
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