Matern Child Health J DOI 10.1007/s10995-014-1523-y
Shared Decision Making Among Parents of Children with Mental Health Conditions Compared to Children with Chronic Physical Conditions Ashley M. Butler • Sara Elkins • Marc Kowalkowski Jean L. Raphael
•
Ó Springer Science+Business Media New York 2014
Abstract High quality care in pediatrics involves shared decision making (SDM) between families and providers. The extent to which children with common mental health disorders experience SDM is not well known. The objectives of this study were to examine how parent-reported SDM varies by child health (physical illness, mental health condition, and comorbid mental and physical conditions) and to examine whether medical home care attenuates any differences. We analyzed data on children (2–17 years) collected through the 2009/2010 National Survey of Children with Special Health Care Needs. The sample consisted of parents of children in one of three child health categories: (1) children with a chronic physical illness but no mental health condition; (2) children with a common mental health condition but no chronic physical condition; and (3) children with comorbid mental and chronic physical conditions. The primary dependent variable was parent-report of provider SDM. The primary independent variable was health condition category. Multivariate linear regression analyses were conducted. Multivariate analyses controlling for sociodemographic variables and parent-
A. M. Butler (&) S. Elkins Section of Psychology, Baylor College of Medicine, Houston, TX, USA e-mail: [email protected] M. Kowalkowski Department of Medicine, Baylor College of Medicine, Houston, TX, USA J. L. Raphael Academic Pediatrics, Baylor College of Medicine, Houston, TX, USA
reported health condition impact indicated lower SDM among children with a common mental health conditiononly (B = -0.40; p \ 0.01) and children with comorbid conditions (B = -0.67; p \ 0.01) compared to children with a physical condition-only. Differences in SDM for children with a common mental health condition-only were no longer significant in the model adjusting for medical home care. However, differences in SDM for children with comorbid conditions persisted after adjusting for medical home care. Increasing medical home care may help mitigate differences in SDM for children with mental health conditions-only. Other interventions may be needed to improve SDM among children with comorbid mental and physical conditions. Keywords Shared decision making Child mental health Communication Medical home
Introduction The Substance Abuse and Mental Health Services Administration has advocated shared decision making (SDM) to improve the quality of mental health care [1]. The American Academy of Pediatrics and the Institute of Medicine have also emphasized SDM as an important component of health care quality [2, 3]. SDM is the degree to which both the provider and parent participate in treatment decision-making and agree on treatment decisions [4]. In previous child mental health studies, provider SDM behaviors that have been examined collectively include discussing treatment options, providing parents with opportunities to ask questions and indicate concerns, and exploring parent ideas for how the condition should be managed [5, 6]. While few studies have examined
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outcomes of SDM in mental health care, possible benefits of SDM with parents include improved quality of care [1, 7, 8]. Furthermore, little is known regarding the extent to which parents of children with different mental health conditions experience SDM with providers. Evidence suggests that families of children with mental health disorders may be at risk of experiencing lower SDM compared to families of children with physical conditions. Research indicates low parental discussion of children’s mental health compared to physical health [9]. Mental health stigma and negative parental perceptions about mental health treatment options (e.g. psychotropic medications) may especially inhibit parent participation in SDM in child mental health care [10]. Children with comorbid mental and physical conditions may also experience lower SDM compared to children with a physical condition, given their complex conditions might require immediate medical attention and less opportunities for sharing of information and SDM. Additionally, children with comorbid mental health and physical conditions experience higher functional impairment than children with physical conditions alone [11, 12]. Higher functional impairment is associated with lower SDM [6], and thus may contribute to lower SDM among children with comorbid conditions. The scarce research on SDM among children with mental health conditions compared to children with physical conditions involved comparison of children with attention-deficit hyperactivity disorder (ADHD) to children with asthma [6]. Additional study is warranted to examine SDM among children with various mental health conditions. No study has investigated the extent to which children with mental health and physical condition comorbidity experience SDM. Investigation is also warranted to assess whether receiving comprehensive health care delivery can improve SDM among children with mental health conditions and children with comorbid mental and physical conditions. The American Academy of Pediatrics defines a medical home as a model of primary care that encompasses accessible, continuous, comprehensive, family-centered, coordinated, compassionate, and culturally effective care [12]. Medical home care is considered an integrated health care delivery model and has been encouraged for all children by the American Academy of Pediatrics [13]. The anticipated improved outcomes of medical home care are well-aligned with SDM. In particular, medical home care has the potential to facilitate strong partnerships between providers and families given the emphasis on accessible, continuous, family-centered, and culturally effective care. Children with mental health conditions are less likely to receive medical home care [14]. Therefore, examining whether medical home care may attenuate any differences in SDM among children with mental health conditions as
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contrasted to children with chronic physical conditions is important. The aims of this study were to examine (a) whether SDM varies by child health (physical condition, mental health condition, and comorbid mental and physical condition), and (b) whether receiving medical home care attenuates any differences in SDM among child health conditions. We hypothesized (a) parents of children with a common mental health condition-only and children with comorbid mental and physical conditions would have lower SDM compared to children with a chronic physical condition-only, and (b) medical home care would attenuate associations between SDM and child health condition.
Methods Data Source and Design The study is an analysis of data from parents and guardians of children 2–17 years of age who participated in the 2009–2010 National Survey of Children with Special Health Care Needs (NS-CSHCN) [15]. The NS-CSHCN is a crosssectional telephone-based survey of a nationally representative sample of children with special health care needs in the United States. The survey has been conducted by the Centers for Disease Control and Prevention’s National Center for Health Statistics every 4 years since 2001 and is sponsored by the Maternal Child Health Bureau (MCHB). Children with special health care needs are defined as having or being at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally [16, 17]. Study Population In the 2009–2010 sample, a random digit dial procedure identified 372,698 children under the age of 18 years residing in 196,159 households across the US. These households were screened to identify children who met the federal MCHB qualification for designation as a child with special health care needs. Households with either a landline telephone or cell phone were included in the 2009/2010 survey. A total of 40,242 interviews were completed with parents of a child with a special health care need [15]. The Baylor College of Medicine Institutional Review Board approved the current study. The subset of the survey population included in the current study (N = 21,721) consisted of parents of children ages 2–17 who represented three groups: (a) children with a physical health condition only, (b) children with a mental health condition only, and (c) children with comorbid
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common mental health and physical conditions. Children with a special healthcare need but who were ages 2 years or younger or who did not have a mental health or physical condition that represented the focus of the current study (conditions are listed below) were not included. Dependent Variables Shared Decision Making The four questions that assess SDM in the NS-CSHCN are included in Table 1. Survey developers used an expert panel, cognitive interviews, and item pretesting with 132 parents to develop the four questions. Cognitive interviews showed the instructions and four questions had face validity and were understood as intended and reliable. Family focus groups before and during item development confirmed the four items represented the most essential components of SDM. The internal consistency coefficient for the questions has been reported at 0.87, indicating high internal consistency. Individual item correlations show different information assessed by each item, with item-total correlations ranging from 0.59 to 0.69 (Richard LeDonne from the Child and Adolescent Measurement Initiative, personal communication, July 12, 2012). Parents respond to each question on a 4-category Likert scale: Never, Sometimes, Usually, or Always. Each item response was scored on a scale from 1 (never) to 4 (always). A total score was calculated for each participant (possible range of scores is 4–16), with higher scores indicated higher SDM.
survey questions: ‘‘Has a doctor or other health care provider ever told you that [child] had [condition], even if he/ she does not have the condition now?’’; and ‘‘Does [child] currently have the [condition]?’’ Parents who responded ‘‘yes’’ to both questions were considered to have a child with a physical condition. Children with a physical health condition had one or more of the following: asthma, diabetes, epilepsy, migraine headaches, head injury, concussion, or traumatic brain injury, heart problem, blood problems such as anemia or sickle cell, cystic fibrosis, cerebral palsy, muscular dystrophy, Down syndrome, arthritis, or allergies. Three survey questions were used to determine the presence of a mental health diagnosis: ‘‘Does your child have any kind of emotional, developmental, or behavioral problem for which (‘he/she needs’/’they need’) treatment or counseling?’’; ‘‘Has a doctor or other health care provider ever told you that [child] had [condition], even if he/she does not have the condition now?’’; and ‘‘Does [child] currently have the [condition]?’’ Parents who responded ‘‘yes’’ to (a) the question related to treatment/counseling and (b) both questions related to any of the conditions were included in this study. Questions related to the following conditions: attention deficit disorder or ADHD, behavioral or conduct problems such as oppositional defiant disorder or conduct disorder (termed disruptive behavior disorders), depression, or anxiety problems. These disorders represent the two most common classifications of child mental disorders: externalizing (ADHD and disruptive behavior disorders) and internalizing disorders (depression, anxiety), and disorders within each category are highly correlated [15].
Independent Variables Covariates Type of Health Condition We defined 3 health condition groups: (a) children with a physical health condition only; (b) children with a mental health condition only; and (c) children with comorbid common mental health and physical conditions. The presence of a physical condition was determined using two
Covariates consisted of child race/ethnicity, child gender, child age, insurance status, parent education, household poverty status, household primary language, parent-reported health condition impact, and child receipt of medical home care. Three mutually-exclusive categories were created for child race/ethnicity: non-Latino white, non-Latino
Table 1 Survey questions and average scores for measurement of SDM Item
Ma
SD
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?
3.45
0.83
2. How often did they encourage you to ask questions or raise concerns?
3.48
0.88
3. How often did they make it easy for you to ask questions or raise concerns?
3.59
0.74
4. How often did they consider and respect what health care and treatment choices you thought would work best for [child]?
3.51
0.78
Data source: National Center for Health Statistics and Maternal and Child Health Bureau, National Survey of Children with Special Health Care Needs, 2009/2010 M mean, SD standard deviation a
Range 1–4
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African American, and Latino. We did not include children from other minority categories due to the small sample size for each group. Parents who indicated their child was currently insured and consistently insured during the past 12-months were categorized as having public insurance, private insurance, both private and public insurance, or other insurance; all others were categorized as not insured. Responses for parental education were categorized as less than high school, 12 years/high school graduate, and more than high school. Income data relative to the federal poverty level (FPL) was assessed. Household primary language was categorized as English vs. Not English. Children’s level of daily functioning was categorized as the extent to which the child’s health condition(s) affect their daily activities (i.e., never affected, moderately affected, or severely affected). Medical home care was assessed using 19 items from the NS-CSHCN that represent five subcomponents: having a personal doctor/nurse, having a usual source of care, family-centered care, getting needed referrals, and effective care coordination when needed. Medical home care was scored according to an algorithm provided within the NS-CSHCN, in which responses are categorized as: having a medical home versus not having a medical home. This scoring algorithm has been endorsed by the National Quality Forum [18]. The questions that assess medical home care and SDM in the NS-CSHCN have no overlap. Data Analysis Descriptive statistics were performed to summarize sample characteristics. Chi square tests were performed to determine differences in the distribution of sample characteristics across health conditions. We first examined the multivariate relationships between child health condition and SDM while controlling for child functioning and sociodemographic variables (child race/ethnicity, child gender, age, and insurance status, parent education, household poverty status, and household primary language). We then conducted an additional multivariate analysis to systematically evaluate the relationship between child health condition and SDM when medical home care was included in the model. All analyses were performed using SAS version 9.2 (SAS Institute, Inc.; Cary, NC, USA).
13 % had a mental health condition-only, and 22 % had comorbid mental health and physical conditions. Table 4 (appendix) reports the proportions of each mental health condition and each physical condition. The total SDM score for the entire sample was 13.98 (SD = 2.77). Mean total SDM scores were as follows among parents of each health condition group: physical condition-only (M = 14.29; SD = 2.52); mental health condition-only (M = 13.67; SD = 2.99); and comorbid conditions (M = 13.22; SD = 3.16). Further, Table 1 reports mean scores for each SDM item for the total sample. Table 2 shows there were significant differences in the proportion sociodemographic characteristics, children’s daily functioning, and medical home care across health condition groups. Associations Between SDM and Child Health Condition Table 3 reports results from linear regression analyses examining the association between health condition and SDM while controlling for functioning and sociodemographic variables. Parents of children who had a mental health condition-only and parents of children with mental and physical condition comorbidity reported lower SDM than parents of children with a physical condition-only. Table 3 shows that when medical home care was included in the model, differences in SDM were no longer significant for parents of children with a mental health condition compared to children with a physical condition. However, SDM differences persisted for children with comorbid conditions compared to children with a physical condition-only. In the multivariate model that did not include medical home care, lower SDM was found for parents of African American and Latino children; parents with lower household incomes of 0–99 % FPL, 100–199 % FPL, and 200–399 % FPL (compared to 400 % FPL or greater); parents of children with public insurance or who are uninsured; and parents with a primary household language other than English. Parents of children whose daily functioning is moderately or consistently affected (compared to never affected) also had lower SDM. Finally, not having medical home care was associated with lower SDM. Finally, exploratory analysis examining the interaction of race/ethnicity and household poverty status while controlling for child functioning and sociodemographic variables showed no significant interaction effects.
Results Sample Demographics
Discussion
Sample characteristics of each health condition group are summarized in Table 2. The proportion of health conditions were: 65 % of the sample had a physical condition-only,
This nationally representative study is the first to report on SDM among children with various mental health conditions or children with mental and physical condition
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Matern Child Health J Table 2 Demographic characteristics by health Variable
Overall (N = 21,721) Frequency, N (%)
Mental health condition (n = 2,728) n (%)
Physical condition (n = 14,219) n (%)
Comorbid conditions (n = 4,774) n (%)
Non-Latino White
16,394 (75.5)
2,141 (78.5)
10,669 (75.0)
3,584 (75.1)
Latino African American
2,640 (12.1) 2,687 (12.4)
321 (11.8) 266 (9.8)
1,721 (12.1) 1,829 (12.9)
598 (12.5) 592 (12.4)
12,793 (58.9)
1,774 (65.0)
7,884 (55.4)
3,135 (65.7)
8,886 (40.9)
952 (34.9)
6,303 (44.3)
1,631 (34.2)
2–5
3,194 (14.7)
114 (4.2)
2,793 (19.6)
287 (6.0)
6–11
8,939 (41.2)
1,219 (44.7)
5,757 (40.5)
1,963 (41.1)
12–17
9,588 (44.1)
1,395 (51.1)
5,669 (39.9)
2,524 (52.9)
\0.01
Race/ethnicity
\0.01
Child’s gender Male Female
\0.01
Child’s age (years)
\0.01
Parent’s highest education received Less than high school
1,121 (5.2)
167 (6.1)
594 (4.2)
360 (7.5)
High school graduate
3,231 (14.9)
492 (18.0)
1,881 (13.2)
858 (18.0)
More than high school
17,369 (80.0)
2,069 (75.8)
11,744 (82.6)
3,556 (74.5)
0–99 % FPL
3,577 (16.5)
516 (18.9)
1,876 (13.2)
1,185 (24.8)
100–199 % FPL 200–399 % FPL
4,167 (19.2) 6,793 (31.3)
566 (20.7) 819 (30.0)
2,501 (17.6) 4,617 (32.5)
1,100 (23.0) 1,357 (28.4)
400 % FPL or greater
7,184 (33.1)
827 (30.3)
5,225 (36.7)
1,132 (23.7)
12,990 (59.8)
1,416 (51.9)
9,582 (67.4)
1,992 (41.7) 1,961 (41.1)
\0.01
Poverty level
\0.01
Insurance Private Public
6,010 (27.7)
942 (34.5)
3,107 (21.9)
Both private and public
1,343 (6.2)
173 (6.3)
629 (4.4)
541 (11.3)
Other
789 (3.6)
111 (4.1)
537 (3.8)
141 (3.0)
Uninsured
553 (2.5)
76 (2.8)
342 (2.4)
135 (2.8)
Primary household language English Other language
p valuea
0.01 21,054 (96.9) 667 (3.1)
2,646 (97.0) 82 (3.0)
13,751 (96.7) 468 (3.3)
4,657 (97.5) 117 (2.5) \0.01
Medical home care No
10,776 (49.6)
1,601 (58.7)
6,010 (42.3)
3,165 (66.3)
Yes
10,268 (47.3)
1,008 (37.0)
7,825 (55.0)
1,435 (30.1)
Never affected Moderately affected
8,318 (38.3) 9,057 (41.7)
747 (27.4) 1,250 (45.8)
6,918 (48.7) 5,938 (41.8)
653 (13.7) 1,869 (39.1)
Consistently affected
4,304 (19.8)
722 (26.5)
1,345 (9.5)
2,237 (46.9)
\0.01
Daily functioning
FPL federal poverty level a
Chi square test of differences in the distribution of sample characteristics across health
comorbidity. As predicted, having a mental health condition-only and having mental and physical condition comorbidity were associated with lower SDM when controlling for child functioning and sociodemographic factors. Our hypothesis was based on previous research demonstrating less parental discussion of mental health compared to physical health [19], and the association
between greater parent-reported stigma and lower provider SDM among parents of children with mental health conditions [20]. Limited provider access to different mental health specialists is associated with ineffective parentprovider mental health communication during primary care visits [21]. Thus, inadequate access to specialists among providers may limit SDM among families of children with
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Matern Child Health J Table 3 Associations between health condition and SDM with and without controlling for medical home care Variable
Health condition (ref: physical condition)
Frequency, N (%)
Medical home care not included
Medical home care included
3 (SE)
p value
3 (SE)
p value
14,219 (65.5)
Mental health condition
2,728 (12.6)
-0.40** (0.06)
0.00
-0.09t (0.06)
0.088
Comorbid conditions Race/ethnicity (ref: NLW)
4,774 (22.0) 16,394 (75.5)
-0.67** (0.05)
0.00
-0.35** (0.05)
0.000
Latino
2,640 (12.2)
-0.33** (0.06)
0.00
-0.15* (0.06)
0.012
African American
2,687 (12.4)
-0.20** (0.06)
0.00
0.01 (0.05)
0.794
Child’s age, years (ref: 2–5)
3,194 (14.7)
6–11
8,939 (41.2)
0.05 (0.06)
0.40
0.04 (0.05)
0.421
12–17
9,588 (44.1)
0.01 (0.06)
0.82
0.02 (0.05)
0.688
-0.05 (0.04)
0.18
-0.02 (0.03)
0.476
-0.06 (0.09)
0.49
0.07 (0.09)
0.446
0.08 (0.06)
0.14
0.11* (0.05)
0.033
3,577 (16.5)
-0.17* (0.08)
0.02
-0.02 (0.07)
0.820
Child’s gender (ref: Female) Male Parent’s highest education received (ref: More than high school)
8,886 (40.9) 12,793 (58.9) 17,369 (80.0)
Less than high school
1,121 (5.2)
12 years, high school graduate
3,231 (14.9)
Poverty level (ref: 400 % FPL or greater) 0–99 % FPL 100–199 % FPL
7,184 (33.1) 4,167 (19.2)
-0.19** (0.06)
0.00
-0.05 (0.06)
0.419
6,793 (31.3) 12,990 (59.8)
-0.09* (0.05)
0.04
-0.03 (0.04)
0.427
Public
6,010 (27.7)
-0.19** (0.06)
0.00
-0.14** (0.05)
0.009
Both private and public
1,343 (6.2)
-0.12 (0.08)
0.14
-0.03 (0.08)
0.714
200–399 % FPL Insurance (ref: private)
Other
789 (3.6)
-0.08 (0.10)
0.42
-0.05 (0.09)
0.580
Uninsured
553 (2.5)
-1.26** (0.12)
0.00
-0.94** (0.11)
0.000
-0.49** (0.12)
0.00
-0.26* (0.11)
0.024
9,057 (41.7)
-0.49** (0.04)
0.00
-0.30** (0.04)
0.000
4,304 (19.8)
-0.94** (0.06)
0.00
-0.52** (0.05)
0.000
-2.04** (0.04)
0.000
Primary household language (ref: English)
21,054 (96.9)
Other language Daily functioning (ref: never affected) Moderately affected Consistently affected Medical home care (ref: yes) No
667 (3.1) 8,318 (38.3)
10,268 (47.3) 10,776 (49.6)
SDM shared decision making, SE standard error, Ph physical health, Mh mental health, NLW non-Latino White, FPL federal poverty level ** p \ 0.01; * p \ 0.05, t p \ 0.10
mental health conditions compared to parents of children with chronic physical conditions. Medical complexity may further reduce opportunities for SDM among families of children with mental and physical comorbidity. Further, different provider expertise with physical conditions compared to mental health conditions or provider time constraints may lessen SDM among children with comorbid conditions. Findings from the current study support subsequent research to understand reasons for lower SDM among families of children with mental health conditions. Examination of the extent to which stigma, medical complexity, provider expertise, provider time constraints, or access to mental health specialists influence information
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sharing and cooperative decision are viable directors for future study. Review of the literature indicates this is the first study to systematically examine whether medical home care attenuates differences in SDM among child health conditions. The current study builds on findings from a previous nationally representative study of SDM among children with ADHD or asthma [6]. In the study of children with ADHD and asthma, SDM did not vary between children with ADHD or asthma. Yet, the previous study sample was limited to children who had a personal doctor or nurse, which is a component of medical home care. The current study included children with and without components of
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medical home care. The current and previous studies together indicate that increasing components of medical home care may attenuate SDM differences between children with diverse mental health conditions compared to children with various physical illnesses. This finding contributes to the growing literature on the potential benefits of medical home care [22–24]. Finally, we anticipated that medical home care would attenuate lower SDM for children with comorbid mental and physical conditions. To our knowledge, this is the first study to examine SDM among children with comorbid conditions. Time constraints for addressing complex medical needs among children with comorbid conditions may reduce opportunities for SDM. Overall, a growing number of studies demonstrate the common co-occurrence of mental and physical conditions, and high functional impairment among children with comorbid conditions, suggesting the need to improve SDM among this vulnerable group of children and families [11, 25]. To our knowledge, this was the first study to demonstrate an association between sociodemographic characteristics (African American or Latino child race/ethnicity, lower household income, language other than English as the primary household language, and having public insurance or uninsured status) and SDM using nationally representative data. Previous study among children with ADHD or asthma using the Medical Expenditure Panel Survey, a nationally representative database, showed no association between minority status, parental education, or insurance status and SDM [6]. Differences in findings in the current study compared to the previous study are likely due to differences in sample characteristics. In the previous study, children who did not have health insurance and children of parents with lower education attainment were more likely to be excluded from the study analysis. The current study did not have any exclusion criteria. The current study findings may more accurately estimate the association between various levels of sociodemographic characteristics and SDM among children with a range of mental health and chronic physical conditions. Future studies should re-examine the association between sociodemographic factors and SDM among children with different conditions. Finally, consistent with previous study, higher functional impairment was associated with lower SDM [6].
more, additional variables that may contribute to SDM were not available in the dataset, such as, parental health literacy or the length of parental relationships with providers. Additionally, experiences of SDM were assessed using parent report, which may be associated with recall bias. Parent-report of SDM may not reflect children’s experience of SDM with providers. Furthermore, few standardized parent-report measures assess SDM; measures are only beginning to be developed [26, 27]. Additional measures of functional impairment would have expended our options for examining impairment and SDM. Despite these limitations, the study includes a large nationally representative sample of children with special healthcare needs including different mental health conditions, and various chronic physical conditions. This sample composition increases the generalizability of the findings.
Conclusions The Substance Abuse and Mental Health Services Administration has emphasized SDM to improve the quality and outcomes of mental health care [1]. Results from this study show that children with mental health conditions and children with mental health and physical conditions are at risk for lower SDM with providers. Increasing medical home care may help mitigate differences in SDM between children with mental health conditions compared to children with physical conditions. However, results suggest other strategies are needed to improve SDM among children with comorbid mental and physical conditions. Emerging research on decision aids for improving SDM making among children with ADHD suggest promising directions for research include investigation of decision aids for improving SDM among parents of children with comorbid mental health and physical conditions [28]. Further, effective practices to improve SDM among parents may include providing parents with decision aids to help them understand and clarify their choices and preferences for mental health treatment [1, 28]. Additional strategies to promote SDM may include peerdelivered workshops to improve parental SDM skills, parent-centered mental health communication skills training for providers, or behavioral intervention technologies (such as web-based interventions) to improve parent and/or provider SDM skills [1, 29–31].
Study Limitations Appendix The study design is cross-sectional, thus we are unable to conclude whether child health influences SDM. Further-
See Table 4.
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Matern Child Health J Table 4 Proportions of mental and physical health conditions Condition
Frequency (N)
%
Mental health Attention deficit hyperactivity disorder
10,392
47.8
Oppositional defiant disorder/conduct disorder Depression
4,181
19.2
3,265
15.0
Anxiety
5,988
27.6
11,496
52.9
Physical health Asthma Diabetes
717
3.3
Epilepsy
1,084
5.0
Migraine or frequent headaches
3,265
15.0
Head injury, concussion, or traumatic brain injury
437
2.0
Heart problem
968
4.5
Blood problems, such as anemia or sickle cell
409
1.9
Cystic fibrosis Cerebral palsy
84 574
0.4 2.6
Muscular dystrophy
104
0.5
Down syndrome
357
1.6
Arthritis or other joint problems Allergies
1,050
4.8
16,771
77.2
Data source: National Center for Health Statistics and Maternal and Child Health Bureau, National Survey of Children with Special Health Care Needs, 2009/2010
References 1. Center for Mental Health Services Substance Abuse and Mental Health Services Administration. (2010). Shared decision-making in mental health care: Practice, research, and future directions. Available at: http://www.integration.samhsa.gov/clinical-prac tice/shared-decision-making. Accessed 2 Jan 2014. 2. American Academy of Pediatrics Committee on Hospital Care and Institute for Patient and Family Centered Care. (2012). Patient- and family-centered care and the pediatrician’s role. Pediatrics, 129(2), 394–404. 3. Institute of Medicine of the National Academies. (2006). Improving the quality of health care for mental and substance-use conditions (pp. 200–264). Washington, DC: National Academy Press. 4. Charles, C., Gafni, A., & Whelan, T. (1997). Shared decisionmaking in the medical encounter: What does it mean? (or it takes at least two to tango). Social Science and Medicine, 44(5), 681–692. 5. Brinkman, W. B., Hartl, J., Rawe, L. M., et al. (2011). Physicians’ shared decision-making behaviors in attention-deficit/ hyperactivity disorder care. Archives of Pediatrics and Adolescent Medicine, 165(11), 1013–1019. 6. Fiks, A. G., Localio, A. R., Alessandrini, E. A., et al. (2010). Shared decision-making in pediatrics: A national perspective. Pediatrics, 126(2), 306–314.
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7. Zima, B. T., Bussing, R., Tang, L., et al. (2013). Do parent perceptions predict continuity of publicly funded care for attention-deficit/hyperactivity disorder? Pediatrics, 131(Suppl 1), S50–S59. 8. Fiks, A. G., Mayne, S., Localio, A. R., et al. (2012). Shared decision making and behavioral impairment: A national study among children with special health care needs. BMC Pediatrics, 12, 153. 9. Brown, J. D., Wissow, L. S., & Riley, A. W. (2007). Physician and patient characteristics associated with discussion of psychosocial health during pediatric primary care visits. Clinical Pediatrics, 46(9), 812–820. 10. Schauer, C., Everett, A., del Vecchio, P., et al. (2007). Promoting the value and practice of shared decision-making in mental health care. Psychiatric Rehabilitation Journal, 31(1), 54–61. 11. Chavira, D. A., Garland, A. F., Daley, S., et al. (2008). The impact of medical comorbidity on mental health and functional health outcomes among children with anxiety disorders. Journal of Developmental and Behavioral Pediatrics, 29(5), 394–402. 12. Baca, C. B., Vickrey, B. G., Caplan, R., et al. (2011). Psychiatric and medical comorbidity and quality of life outcomes in childhood-onset epilepsy. Pediatrics, 128(6), e1532–e1543. 13. Medical Home Initiatives for Children with Special Needs Project Advisory Committee. (2002). American Academy of P. The medical home. Pediatrics, 110(1 Pt 1), 184–186. 14. Sheldrick, R. C., & Perrin, E. C. (2010). Medical home services for children with behavioral health conditions. Journal of Developmental and Behavioral Pediatrics, 31(2), 92–99. 15. Child and Adolescent Health Measurement Initiatitive. (2012). 2009–2010 NS-CSHCN indicator and outcome variables SPSS codebook, Version 1. Data Resource Center for Child and Adolescent Health. 16. Bethell, C. D., Read, D., Stein, R. E., et al. (2002). Identifying children with special health care needs: Development and evaluation of a short screening instrument. Ambulatory Pediatrics, 2(1), 38–48. 17. McPherson, M., Arango, P., Fox, H., et al. (1998). A new definition of children with special health care needs. Pediatrics, 102(1 Pt 1), 137–140. 18. Child and Adolescent Health Measurement Initiatitive. (2011). Child health and health care quality measures from the NSCH and NS-CSHCN endorsed for use by The National Quality Forum. Available at: http://childhealthdata.org/docs/drc/ endorsed-nqf-measures-1-pager-10-13-11-pdf.pdf. Accessed 2 Jan 2014. 19. Wissow, L. S., Larson, S. M., Roter, D., et al. (2003). Longitudinal care improves disclosure of psychosocial information. Archives of Pediatrics and Adolescent Medicine, 157(5), 419–424. 20. Butler, A. M. (2014). Shared decision making, stigma, and child mental health functioning among families referred for primary care-located mental health services. Family, Systems, and Health, 32(1), 116–121. 21. Brown, J. D., & Wissow, L. S. (2008). Disagreement in parent and primary care provider reports of mental health counseling. Pediatrics, 122(6), 1204–1211. 22. Homer, C. J., Klatka, K., Romm, D., et al. (2008). A review of the evidence for the medical home for children with special health care needs. Pediatrics, 122(4), e922–e937. 23. Long, W. E., Bauchner, H., Sege, R. D., et al. (2012). The value of the medical home for children without special health care needs. Pediatrics, 129(1), 87–98. 24. Romaire, M. A., & Bell, J. F. (2010). The medical home, preventive care screenings, and counseling for children: Evidence from the Medical Expenditure Panel Survey. Academic Pediatrics, 10(5), 338–345.
Matern Child Health J 25. Cohen, P., Pine, D. S., Must, A., et al. (1998). Prospective associations between somatic illness and mental illness from childhood to adulthood. American Journal of Epidemiology, 147(3), 232–239. 26. Elwyn, G., Edwards, A., Mowle, S., et al. (2001). Measuring the involvement of patients in shared decision-making: A systematic review of instruments. Patient Education and Counseling, 43(1), 5–22. 27. Weiss, M. C., & Peters, T. J. (2008). Measuring shared decision making in the consultation: A comparison of the OPTION and Informed Decision Making instruments. Patient Education and Counseling, 70(1), 79–86. 28. Brinkman, W. B., Hartl Majcher, J., Poling, L. M., et al. (2013). Shared decision-making to improve attention-deficit hyperactivity disorder care. Patient Education and Counseling, 93(1), 95–101.
29. Wissow, L., Gadomski, A., Roter, D., et al. (2011). Aspects of mental health communication skills training that predict parent and child outcomes in pediatric primary care. Patient Education and Counseling, 82(2), 226–232. 30. Kemper, K. J., Foy, J. M., Wissow, L., et al. (2008). Enhancing communication skills for pediatric visits through on-line training using video demonstrations. BMC Medical Education, 8, 8. 31. Steinwachs, D. M., Roter, D. L., Skinner, E. A., et al. (2011). A web-based program to empower patients who have schizophrenia to discuss quality of care with mental health providers. Psychiatric Services, 62(11), 1296–1302.
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Shared Decision Making Among Parents of Children with Mental Health Conditions Compared to Children with Chronic Physical Conditions Ashley M. Butler • Sara Elkins • Marc Kowalkowski Jean L. Raphael
•
Ó Springer Science+Business Media New York 2014
Abstract High quality care in pediatrics involves shared decision making (SDM) between families and providers. The extent to which children with common mental health disorders experience SDM is not well known. The objectives of this study were to examine how parent-reported SDM varies by child health (physical illness, mental health condition, and comorbid mental and physical conditions) and to examine whether medical home care attenuates any differences. We analyzed data on children (2–17 years) collected through the 2009/2010 National Survey of Children with Special Health Care Needs. The sample consisted of parents of children in one of three child health categories: (1) children with a chronic physical illness but no mental health condition; (2) children with a common mental health condition but no chronic physical condition; and (3) children with comorbid mental and chronic physical conditions. The primary dependent variable was parent-report of provider SDM. The primary independent variable was health condition category. Multivariate linear regression analyses were conducted. Multivariate analyses controlling for sociodemographic variables and parent-
A. M. Butler (&) S. Elkins Section of Psychology, Baylor College of Medicine, Houston, TX, USA e-mail: [email protected] M. Kowalkowski Department of Medicine, Baylor College of Medicine, Houston, TX, USA J. L. Raphael Academic Pediatrics, Baylor College of Medicine, Houston, TX, USA
reported health condition impact indicated lower SDM among children with a common mental health conditiononly (B = -0.40; p \ 0.01) and children with comorbid conditions (B = -0.67; p \ 0.01) compared to children with a physical condition-only. Differences in SDM for children with a common mental health condition-only were no longer significant in the model adjusting for medical home care. However, differences in SDM for children with comorbid conditions persisted after adjusting for medical home care. Increasing medical home care may help mitigate differences in SDM for children with mental health conditions-only. Other interventions may be needed to improve SDM among children with comorbid mental and physical conditions. Keywords Shared decision making Child mental health Communication Medical home
Introduction The Substance Abuse and Mental Health Services Administration has advocated shared decision making (SDM) to improve the quality of mental health care [1]. The American Academy of Pediatrics and the Institute of Medicine have also emphasized SDM as an important component of health care quality [2, 3]. SDM is the degree to which both the provider and parent participate in treatment decision-making and agree on treatment decisions [4]. In previous child mental health studies, provider SDM behaviors that have been examined collectively include discussing treatment options, providing parents with opportunities to ask questions and indicate concerns, and exploring parent ideas for how the condition should be managed [5, 6]. While few studies have examined
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outcomes of SDM in mental health care, possible benefits of SDM with parents include improved quality of care [1, 7, 8]. Furthermore, little is known regarding the extent to which parents of children with different mental health conditions experience SDM with providers. Evidence suggests that families of children with mental health disorders may be at risk of experiencing lower SDM compared to families of children with physical conditions. Research indicates low parental discussion of children’s mental health compared to physical health [9]. Mental health stigma and negative parental perceptions about mental health treatment options (e.g. psychotropic medications) may especially inhibit parent participation in SDM in child mental health care [10]. Children with comorbid mental and physical conditions may also experience lower SDM compared to children with a physical condition, given their complex conditions might require immediate medical attention and less opportunities for sharing of information and SDM. Additionally, children with comorbid mental health and physical conditions experience higher functional impairment than children with physical conditions alone [11, 12]. Higher functional impairment is associated with lower SDM [6], and thus may contribute to lower SDM among children with comorbid conditions. The scarce research on SDM among children with mental health conditions compared to children with physical conditions involved comparison of children with attention-deficit hyperactivity disorder (ADHD) to children with asthma [6]. Additional study is warranted to examine SDM among children with various mental health conditions. No study has investigated the extent to which children with mental health and physical condition comorbidity experience SDM. Investigation is also warranted to assess whether receiving comprehensive health care delivery can improve SDM among children with mental health conditions and children with comorbid mental and physical conditions. The American Academy of Pediatrics defines a medical home as a model of primary care that encompasses accessible, continuous, comprehensive, family-centered, coordinated, compassionate, and culturally effective care [12]. Medical home care is considered an integrated health care delivery model and has been encouraged for all children by the American Academy of Pediatrics [13]. The anticipated improved outcomes of medical home care are well-aligned with SDM. In particular, medical home care has the potential to facilitate strong partnerships between providers and families given the emphasis on accessible, continuous, family-centered, and culturally effective care. Children with mental health conditions are less likely to receive medical home care [14]. Therefore, examining whether medical home care may attenuate any differences in SDM among children with mental health conditions as
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contrasted to children with chronic physical conditions is important. The aims of this study were to examine (a) whether SDM varies by child health (physical condition, mental health condition, and comorbid mental and physical condition), and (b) whether receiving medical home care attenuates any differences in SDM among child health conditions. We hypothesized (a) parents of children with a common mental health condition-only and children with comorbid mental and physical conditions would have lower SDM compared to children with a chronic physical condition-only, and (b) medical home care would attenuate associations between SDM and child health condition.
Methods Data Source and Design The study is an analysis of data from parents and guardians of children 2–17 years of age who participated in the 2009–2010 National Survey of Children with Special Health Care Needs (NS-CSHCN) [15]. The NS-CSHCN is a crosssectional telephone-based survey of a nationally representative sample of children with special health care needs in the United States. The survey has been conducted by the Centers for Disease Control and Prevention’s National Center for Health Statistics every 4 years since 2001 and is sponsored by the Maternal Child Health Bureau (MCHB). Children with special health care needs are defined as having or being at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally [16, 17]. Study Population In the 2009–2010 sample, a random digit dial procedure identified 372,698 children under the age of 18 years residing in 196,159 households across the US. These households were screened to identify children who met the federal MCHB qualification for designation as a child with special health care needs. Households with either a landline telephone or cell phone were included in the 2009/2010 survey. A total of 40,242 interviews were completed with parents of a child with a special health care need [15]. The Baylor College of Medicine Institutional Review Board approved the current study. The subset of the survey population included in the current study (N = 21,721) consisted of parents of children ages 2–17 who represented three groups: (a) children with a physical health condition only, (b) children with a mental health condition only, and (c) children with comorbid
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common mental health and physical conditions. Children with a special healthcare need but who were ages 2 years or younger or who did not have a mental health or physical condition that represented the focus of the current study (conditions are listed below) were not included. Dependent Variables Shared Decision Making The four questions that assess SDM in the NS-CSHCN are included in Table 1. Survey developers used an expert panel, cognitive interviews, and item pretesting with 132 parents to develop the four questions. Cognitive interviews showed the instructions and four questions had face validity and were understood as intended and reliable. Family focus groups before and during item development confirmed the four items represented the most essential components of SDM. The internal consistency coefficient for the questions has been reported at 0.87, indicating high internal consistency. Individual item correlations show different information assessed by each item, with item-total correlations ranging from 0.59 to 0.69 (Richard LeDonne from the Child and Adolescent Measurement Initiative, personal communication, July 12, 2012). Parents respond to each question on a 4-category Likert scale: Never, Sometimes, Usually, or Always. Each item response was scored on a scale from 1 (never) to 4 (always). A total score was calculated for each participant (possible range of scores is 4–16), with higher scores indicated higher SDM.
survey questions: ‘‘Has a doctor or other health care provider ever told you that [child] had [condition], even if he/ she does not have the condition now?’’; and ‘‘Does [child] currently have the [condition]?’’ Parents who responded ‘‘yes’’ to both questions were considered to have a child with a physical condition. Children with a physical health condition had one or more of the following: asthma, diabetes, epilepsy, migraine headaches, head injury, concussion, or traumatic brain injury, heart problem, blood problems such as anemia or sickle cell, cystic fibrosis, cerebral palsy, muscular dystrophy, Down syndrome, arthritis, or allergies. Three survey questions were used to determine the presence of a mental health diagnosis: ‘‘Does your child have any kind of emotional, developmental, or behavioral problem for which (‘he/she needs’/’they need’) treatment or counseling?’’; ‘‘Has a doctor or other health care provider ever told you that [child] had [condition], even if he/she does not have the condition now?’’; and ‘‘Does [child] currently have the [condition]?’’ Parents who responded ‘‘yes’’ to (a) the question related to treatment/counseling and (b) both questions related to any of the conditions were included in this study. Questions related to the following conditions: attention deficit disorder or ADHD, behavioral or conduct problems such as oppositional defiant disorder or conduct disorder (termed disruptive behavior disorders), depression, or anxiety problems. These disorders represent the two most common classifications of child mental disorders: externalizing (ADHD and disruptive behavior disorders) and internalizing disorders (depression, anxiety), and disorders within each category are highly correlated [15].
Independent Variables Covariates Type of Health Condition We defined 3 health condition groups: (a) children with a physical health condition only; (b) children with a mental health condition only; and (c) children with comorbid common mental health and physical conditions. The presence of a physical condition was determined using two
Covariates consisted of child race/ethnicity, child gender, child age, insurance status, parent education, household poverty status, household primary language, parent-reported health condition impact, and child receipt of medical home care. Three mutually-exclusive categories were created for child race/ethnicity: non-Latino white, non-Latino
Table 1 Survey questions and average scores for measurement of SDM Item
Ma
SD
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?
3.45
0.83
2. How often did they encourage you to ask questions or raise concerns?
3.48
0.88
3. How often did they make it easy for you to ask questions or raise concerns?
3.59
0.74
4. How often did they consider and respect what health care and treatment choices you thought would work best for [child]?
3.51
0.78
Data source: National Center for Health Statistics and Maternal and Child Health Bureau, National Survey of Children with Special Health Care Needs, 2009/2010 M mean, SD standard deviation a
Range 1–4
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African American, and Latino. We did not include children from other minority categories due to the small sample size for each group. Parents who indicated their child was currently insured and consistently insured during the past 12-months were categorized as having public insurance, private insurance, both private and public insurance, or other insurance; all others were categorized as not insured. Responses for parental education were categorized as less than high school, 12 years/high school graduate, and more than high school. Income data relative to the federal poverty level (FPL) was assessed. Household primary language was categorized as English vs. Not English. Children’s level of daily functioning was categorized as the extent to which the child’s health condition(s) affect their daily activities (i.e., never affected, moderately affected, or severely affected). Medical home care was assessed using 19 items from the NS-CSHCN that represent five subcomponents: having a personal doctor/nurse, having a usual source of care, family-centered care, getting needed referrals, and effective care coordination when needed. Medical home care was scored according to an algorithm provided within the NS-CSHCN, in which responses are categorized as: having a medical home versus not having a medical home. This scoring algorithm has been endorsed by the National Quality Forum [18]. The questions that assess medical home care and SDM in the NS-CSHCN have no overlap. Data Analysis Descriptive statistics were performed to summarize sample characteristics. Chi square tests were performed to determine differences in the distribution of sample characteristics across health conditions. We first examined the multivariate relationships between child health condition and SDM while controlling for child functioning and sociodemographic variables (child race/ethnicity, child gender, age, and insurance status, parent education, household poverty status, and household primary language). We then conducted an additional multivariate analysis to systematically evaluate the relationship between child health condition and SDM when medical home care was included in the model. All analyses were performed using SAS version 9.2 (SAS Institute, Inc.; Cary, NC, USA).
13 % had a mental health condition-only, and 22 % had comorbid mental health and physical conditions. Table 4 (appendix) reports the proportions of each mental health condition and each physical condition. The total SDM score for the entire sample was 13.98 (SD = 2.77). Mean total SDM scores were as follows among parents of each health condition group: physical condition-only (M = 14.29; SD = 2.52); mental health condition-only (M = 13.67; SD = 2.99); and comorbid conditions (M = 13.22; SD = 3.16). Further, Table 1 reports mean scores for each SDM item for the total sample. Table 2 shows there were significant differences in the proportion sociodemographic characteristics, children’s daily functioning, and medical home care across health condition groups. Associations Between SDM and Child Health Condition Table 3 reports results from linear regression analyses examining the association between health condition and SDM while controlling for functioning and sociodemographic variables. Parents of children who had a mental health condition-only and parents of children with mental and physical condition comorbidity reported lower SDM than parents of children with a physical condition-only. Table 3 shows that when medical home care was included in the model, differences in SDM were no longer significant for parents of children with a mental health condition compared to children with a physical condition. However, SDM differences persisted for children with comorbid conditions compared to children with a physical condition-only. In the multivariate model that did not include medical home care, lower SDM was found for parents of African American and Latino children; parents with lower household incomes of 0–99 % FPL, 100–199 % FPL, and 200–399 % FPL (compared to 400 % FPL or greater); parents of children with public insurance or who are uninsured; and parents with a primary household language other than English. Parents of children whose daily functioning is moderately or consistently affected (compared to never affected) also had lower SDM. Finally, not having medical home care was associated with lower SDM. Finally, exploratory analysis examining the interaction of race/ethnicity and household poverty status while controlling for child functioning and sociodemographic variables showed no significant interaction effects.
Results Sample Demographics
Discussion
Sample characteristics of each health condition group are summarized in Table 2. The proportion of health conditions were: 65 % of the sample had a physical condition-only,
This nationally representative study is the first to report on SDM among children with various mental health conditions or children with mental and physical condition
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Matern Child Health J Table 2 Demographic characteristics by health Variable
Overall (N = 21,721) Frequency, N (%)
Mental health condition (n = 2,728) n (%)
Physical condition (n = 14,219) n (%)
Comorbid conditions (n = 4,774) n (%)
Non-Latino White
16,394 (75.5)
2,141 (78.5)
10,669 (75.0)
3,584 (75.1)
Latino African American
2,640 (12.1) 2,687 (12.4)
321 (11.8) 266 (9.8)
1,721 (12.1) 1,829 (12.9)
598 (12.5) 592 (12.4)
12,793 (58.9)
1,774 (65.0)
7,884 (55.4)
3,135 (65.7)
8,886 (40.9)
952 (34.9)
6,303 (44.3)
1,631 (34.2)
2–5
3,194 (14.7)
114 (4.2)
2,793 (19.6)
287 (6.0)
6–11
8,939 (41.2)
1,219 (44.7)
5,757 (40.5)
1,963 (41.1)
12–17
9,588 (44.1)
1,395 (51.1)
5,669 (39.9)
2,524 (52.9)
\0.01
Race/ethnicity
\0.01
Child’s gender Male Female
\0.01
Child’s age (years)
\0.01
Parent’s highest education received Less than high school
1,121 (5.2)
167 (6.1)
594 (4.2)
360 (7.5)
High school graduate
3,231 (14.9)
492 (18.0)
1,881 (13.2)
858 (18.0)
More than high school
17,369 (80.0)
2,069 (75.8)
11,744 (82.6)
3,556 (74.5)
0–99 % FPL
3,577 (16.5)
516 (18.9)
1,876 (13.2)
1,185 (24.8)
100–199 % FPL 200–399 % FPL
4,167 (19.2) 6,793 (31.3)
566 (20.7) 819 (30.0)
2,501 (17.6) 4,617 (32.5)
1,100 (23.0) 1,357 (28.4)
400 % FPL or greater
7,184 (33.1)
827 (30.3)
5,225 (36.7)
1,132 (23.7)
12,990 (59.8)
1,416 (51.9)
9,582 (67.4)
1,992 (41.7) 1,961 (41.1)
\0.01
Poverty level
\0.01
Insurance Private Public
6,010 (27.7)
942 (34.5)
3,107 (21.9)
Both private and public
1,343 (6.2)
173 (6.3)
629 (4.4)
541 (11.3)
Other
789 (3.6)
111 (4.1)
537 (3.8)
141 (3.0)
Uninsured
553 (2.5)
76 (2.8)
342 (2.4)
135 (2.8)
Primary household language English Other language
p valuea
0.01 21,054 (96.9) 667 (3.1)
2,646 (97.0) 82 (3.0)
13,751 (96.7) 468 (3.3)
4,657 (97.5) 117 (2.5) \0.01
Medical home care No
10,776 (49.6)
1,601 (58.7)
6,010 (42.3)
3,165 (66.3)
Yes
10,268 (47.3)
1,008 (37.0)
7,825 (55.0)
1,435 (30.1)
Never affected Moderately affected
8,318 (38.3) 9,057 (41.7)
747 (27.4) 1,250 (45.8)
6,918 (48.7) 5,938 (41.8)
653 (13.7) 1,869 (39.1)
Consistently affected
4,304 (19.8)
722 (26.5)
1,345 (9.5)
2,237 (46.9)
\0.01
Daily functioning
FPL federal poverty level a
Chi square test of differences in the distribution of sample characteristics across health
comorbidity. As predicted, having a mental health condition-only and having mental and physical condition comorbidity were associated with lower SDM when controlling for child functioning and sociodemographic factors. Our hypothesis was based on previous research demonstrating less parental discussion of mental health compared to physical health [19], and the association
between greater parent-reported stigma and lower provider SDM among parents of children with mental health conditions [20]. Limited provider access to different mental health specialists is associated with ineffective parentprovider mental health communication during primary care visits [21]. Thus, inadequate access to specialists among providers may limit SDM among families of children with
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Matern Child Health J Table 3 Associations between health condition and SDM with and without controlling for medical home care Variable
Health condition (ref: physical condition)
Frequency, N (%)
Medical home care not included
Medical home care included
3 (SE)
p value
3 (SE)
p value
14,219 (65.5)
Mental health condition
2,728 (12.6)
-0.40** (0.06)
0.00
-0.09t (0.06)
0.088
Comorbid conditions Race/ethnicity (ref: NLW)
4,774 (22.0) 16,394 (75.5)
-0.67** (0.05)
0.00
-0.35** (0.05)
0.000
Latino
2,640 (12.2)
-0.33** (0.06)
0.00
-0.15* (0.06)
0.012
African American
2,687 (12.4)
-0.20** (0.06)
0.00
0.01 (0.05)
0.794
Child’s age, years (ref: 2–5)
3,194 (14.7)
6–11
8,939 (41.2)
0.05 (0.06)
0.40
0.04 (0.05)
0.421
12–17
9,588 (44.1)
0.01 (0.06)
0.82
0.02 (0.05)
0.688
-0.05 (0.04)
0.18
-0.02 (0.03)
0.476
-0.06 (0.09)
0.49
0.07 (0.09)
0.446
0.08 (0.06)
0.14
0.11* (0.05)
0.033
3,577 (16.5)
-0.17* (0.08)
0.02
-0.02 (0.07)
0.820
Child’s gender (ref: Female) Male Parent’s highest education received (ref: More than high school)
8,886 (40.9) 12,793 (58.9) 17,369 (80.0)
Less than high school
1,121 (5.2)
12 years, high school graduate
3,231 (14.9)
Poverty level (ref: 400 % FPL or greater) 0–99 % FPL 100–199 % FPL
7,184 (33.1) 4,167 (19.2)
-0.19** (0.06)
0.00
-0.05 (0.06)
0.419
6,793 (31.3) 12,990 (59.8)
-0.09* (0.05)
0.04
-0.03 (0.04)
0.427
Public
6,010 (27.7)
-0.19** (0.06)
0.00
-0.14** (0.05)
0.009
Both private and public
1,343 (6.2)
-0.12 (0.08)
0.14
-0.03 (0.08)
0.714
200–399 % FPL Insurance (ref: private)
Other
789 (3.6)
-0.08 (0.10)
0.42
-0.05 (0.09)
0.580
Uninsured
553 (2.5)
-1.26** (0.12)
0.00
-0.94** (0.11)
0.000
-0.49** (0.12)
0.00
-0.26* (0.11)
0.024
9,057 (41.7)
-0.49** (0.04)
0.00
-0.30** (0.04)
0.000
4,304 (19.8)
-0.94** (0.06)
0.00
-0.52** (0.05)
0.000
-2.04** (0.04)
0.000
Primary household language (ref: English)
21,054 (96.9)
Other language Daily functioning (ref: never affected) Moderately affected Consistently affected Medical home care (ref: yes) No
667 (3.1) 8,318 (38.3)
10,268 (47.3) 10,776 (49.6)
SDM shared decision making, SE standard error, Ph physical health, Mh mental health, NLW non-Latino White, FPL federal poverty level ** p \ 0.01; * p \ 0.05, t p \ 0.10
mental health conditions compared to parents of children with chronic physical conditions. Medical complexity may further reduce opportunities for SDM among families of children with mental and physical comorbidity. Further, different provider expertise with physical conditions compared to mental health conditions or provider time constraints may lessen SDM among children with comorbid conditions. Findings from the current study support subsequent research to understand reasons for lower SDM among families of children with mental health conditions. Examination of the extent to which stigma, medical complexity, provider expertise, provider time constraints, or access to mental health specialists influence information
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sharing and cooperative decision are viable directors for future study. Review of the literature indicates this is the first study to systematically examine whether medical home care attenuates differences in SDM among child health conditions. The current study builds on findings from a previous nationally representative study of SDM among children with ADHD or asthma [6]. In the study of children with ADHD and asthma, SDM did not vary between children with ADHD or asthma. Yet, the previous study sample was limited to children who had a personal doctor or nurse, which is a component of medical home care. The current study included children with and without components of
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medical home care. The current and previous studies together indicate that increasing components of medical home care may attenuate SDM differences between children with diverse mental health conditions compared to children with various physical illnesses. This finding contributes to the growing literature on the potential benefits of medical home care [22–24]. Finally, we anticipated that medical home care would attenuate lower SDM for children with comorbid mental and physical conditions. To our knowledge, this is the first study to examine SDM among children with comorbid conditions. Time constraints for addressing complex medical needs among children with comorbid conditions may reduce opportunities for SDM. Overall, a growing number of studies demonstrate the common co-occurrence of mental and physical conditions, and high functional impairment among children with comorbid conditions, suggesting the need to improve SDM among this vulnerable group of children and families [11, 25]. To our knowledge, this was the first study to demonstrate an association between sociodemographic characteristics (African American or Latino child race/ethnicity, lower household income, language other than English as the primary household language, and having public insurance or uninsured status) and SDM using nationally representative data. Previous study among children with ADHD or asthma using the Medical Expenditure Panel Survey, a nationally representative database, showed no association between minority status, parental education, or insurance status and SDM [6]. Differences in findings in the current study compared to the previous study are likely due to differences in sample characteristics. In the previous study, children who did not have health insurance and children of parents with lower education attainment were more likely to be excluded from the study analysis. The current study did not have any exclusion criteria. The current study findings may more accurately estimate the association between various levels of sociodemographic characteristics and SDM among children with a range of mental health and chronic physical conditions. Future studies should re-examine the association between sociodemographic factors and SDM among children with different conditions. Finally, consistent with previous study, higher functional impairment was associated with lower SDM [6].
more, additional variables that may contribute to SDM were not available in the dataset, such as, parental health literacy or the length of parental relationships with providers. Additionally, experiences of SDM were assessed using parent report, which may be associated with recall bias. Parent-report of SDM may not reflect children’s experience of SDM with providers. Furthermore, few standardized parent-report measures assess SDM; measures are only beginning to be developed [26, 27]. Additional measures of functional impairment would have expended our options for examining impairment and SDM. Despite these limitations, the study includes a large nationally representative sample of children with special healthcare needs including different mental health conditions, and various chronic physical conditions. This sample composition increases the generalizability of the findings.
Conclusions The Substance Abuse and Mental Health Services Administration has emphasized SDM to improve the quality and outcomes of mental health care [1]. Results from this study show that children with mental health conditions and children with mental health and physical conditions are at risk for lower SDM with providers. Increasing medical home care may help mitigate differences in SDM between children with mental health conditions compared to children with physical conditions. However, results suggest other strategies are needed to improve SDM among children with comorbid mental and physical conditions. Emerging research on decision aids for improving SDM making among children with ADHD suggest promising directions for research include investigation of decision aids for improving SDM among parents of children with comorbid mental health and physical conditions [28]. Further, effective practices to improve SDM among parents may include providing parents with decision aids to help them understand and clarify their choices and preferences for mental health treatment [1, 28]. Additional strategies to promote SDM may include peerdelivered workshops to improve parental SDM skills, parent-centered mental health communication skills training for providers, or behavioral intervention technologies (such as web-based interventions) to improve parent and/or provider SDM skills [1, 29–31].
Study Limitations Appendix The study design is cross-sectional, thus we are unable to conclude whether child health influences SDM. Further-
See Table 4.
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Matern Child Health J Table 4 Proportions of mental and physical health conditions Condition
Frequency (N)
%
Mental health Attention deficit hyperactivity disorder
10,392
47.8
Oppositional defiant disorder/conduct disorder Depression
4,181
19.2
3,265
15.0
Anxiety
5,988
27.6
11,496
52.9
Physical health Asthma Diabetes
717
3.3
Epilepsy
1,084
5.0
Migraine or frequent headaches
3,265
15.0
Head injury, concussion, or traumatic brain injury
437
2.0
Heart problem
968
4.5
Blood problems, such as anemia or sickle cell
409
1.9
Cystic fibrosis Cerebral palsy
84 574
0.4 2.6
Muscular dystrophy
104
0.5
Down syndrome
357
1.6
Arthritis or other joint problems Allergies
1,050
4.8
16,771
77.2
Data source: National Center for Health Statistics and Maternal and Child Health Bureau, National Survey of Children with Special Health Care Needs, 2009/2010
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