Abstract
Objective
Methods
Results
Conclusions
Keywords
Achieving and measuring success: a national agenda for children with special health care needs. Available at: http://www.mchb.hrsa.gov/programs/specialneeds/measuresuccess.htm. Accessed November 13, 2009.
Achieving and measuring success: a national agenda for children with special health care needs. Available at: http://www.mchb.hrsa.gov/programs/specialneeds/measuresuccess.htm. Accessed November 13, 2009.
A guide for advancing family-centered and culturally linguistically competent care. 2007. National Center for Cultural Competence. Available at: http://www11.georgetown.edu/research/gucchd/nccc/documents/fcclcguide.pdf. Accessed March 1, 2009.
Institute for Family-Centered Care. Advancing the Practice of patient- and family-centered ambulatory care: how to get started. Available at: http://www.familycenteredcare.org/pdf/GettingStarted-AmbulatoryCare.pdf. Accessed May 15, 2009.
Organization of Review
Achieving and measuring success: a national agenda for children with special health care needs. Available at: http://www.mchb.hrsa.gov/programs/specialneeds/measuresuccess.htm. Accessed November 13, 2009.
A guide for advancing family-centered and culturally linguistically competent care. 2007. National Center for Cultural Competence. Available at: http://www11.georgetown.edu/research/gucchd/nccc/documents/fcclcguide.pdf. Accessed March 1, 2009.
Child/Children |
• Child |
• Children |
• Adolescent |
Children With Special Health Care Needs (CSHCN) |
• Disabled children |
• Disabled |
• Developmental disabilities |
• Chronic disease |
• Chronic conditions |
• Special needs |
• Special health care needs |
• Activities of daily living |
• Activity limitation |
• Specific conditions * Specific conditions include: attention-deficit and disruptive behavior disorders, attention-deficit disorder with hyperactivity, cerebral palsy, asthma, human immunodeficiency virus (HIV-1, HIV-2), acquired immunodeficiency syndrome (AIDS), epilepsy (subtypes myoclonic, partial, absence, frontal lobe, rolandic, temporal lobe), heart defects, congenital, diabetes mellitus, hemophilia A, hemophilia B, spina bifida occulta, developmental disabilities, mental retardation, sickle-cell anemia, juvenile rheumatoid arthritis, cancer/neoplasms, Down syndrome, trisomy 21, cystic fibrosis, low birth weight, preterm birth, and transplantation. |
Family-Centered Care |
• Professional patient relations |
• Family-centered care (family-centered nursing) |
• Patient-centered care |
• Nurse-patient relations |
• Physician-patient relations |
• Professional patient relations |
• Patient participation |
• Shared decision making |
• Physician-patient communication |
• Family- and youth-driven care |
• Consumer-driven care |
• Family advisor group |
• Consumer advisor group |
• Leadership |
• Family leadership |
• Consumer leadership |
Outcomes |
• Quality of health care health |
• Health status, (health behavior, health knowledge attitude and practice) |
• Family health |
• Mental health |
• Patient satisfaction |
• Health policy |
• Health services/utilization |
• Accessibility |
• Family financial burden |
• Cost/expenditure empowerment uncertainty |
• Organizational efficiency |
• Health system improvement |
• Delivery of health care |
• Child is decision maker |
• Decision making |
• Quality of life |
• Mental health |
• Mental health services |
• Health transition |
• Behavior/behavior disorders, child/adolescent development, mortality |
• Child welfare |
• Maternal welfare |
• Hospitalized, parent-child relationship |
• Health insurance |
Results
First Author, Year | Strength of Findings | Component of Family-Centered Care | Outcome Measured | Condition | Other Characteristics |
---|---|---|---|---|---|
Baruffi G, 2005 | Cross-sectional association |
|
| Generic | 449 CSHCN, representative of Hawaii NS-CSHCN sample |
Blumberg, 2009 | Cross-sectional association |
|
| Generic | 79 589 CSHCN, nationally representative from 2001 and 2005–2006 NS-CSHCN |
Clark NM, 1998 | RCT |
|
| Asthma | 74 physicians treating 637 assessed patients |
Clark NM, 2000 | RCT |
|
| Asthma | 67 physicians seeing 527 patients |
Denboba D, 2006 | Cross-sectional association |
|
| Generic | 37 316 CSHCN, nationally representative |
Farmer JE, 2005 | Intervention with before-and-after comparison |
|
| Generic | 83 families with children with complex chronic health conditions consented with 51 completing full-year intervention |
Frost M, 2010 | Intervention with before-and-after comparison |
|
| Generic | 39 parents of hospitalized infants and toddlers for pretest, 34 for posttest, 76 staff members for pretest, 51 for posttest |
Gavin LA, 1999 | Cross-sectional association |
|
| Asthma | 60 adolescents with severe chronic asthma |
Guendelman S, 2002 | RCT |
|
| Asthma | 134 children with ED or hospital visits for asthma, primarily a Medicaid population, mean age 12 y, >70% African American |
Jessop DJ, 1994 | RCT |
|
| Generic | 219 children with chronic physical conditions |
Mangione-Smith R, 2005 | Intervention with control group |
|
| Asthma | 26 practices, 385 children with moderate to severe asthma |
Ngui EM, 2006 | Cross-sectional association |
|
| Generic | 36 238 CSHSCN, nationally representative |
Owens JS, 2005 | Intervention with before-and-after comparison |
|
| Inattentive and disruptive behavior problems | 42 children K–6th grade, 77% met criteria for ADHD |
Palfrey JS, 2004 | Intervention with before-and-after comparison |
|
| Generic | 117 CSHCN, 56% between 0–5 y, 38% nonwhite |
Scal P, 2005 | Cross-sectional association |
|
| Generic | 4426 CSHCN age 14–18 y, nationally representative of CSHCN age 14–18 y |
Smaldone A, 2005 | Cross-sectional association |
|
| Generic | 748 CSHCN, representative of New York State |
Stein REK, 1991 | RCT |
|
| Generic | Follow-up of 81% of original 178 families, 59% Hispanic, 33% African American, 8% other |
Van Riper M, 1999 | Cross-sectional association |
|
| Down syndrome | 89 children with Down syndrome, 95% white, 58% family income between $25K and $55K, average age 8 y |
Wade SL, 2006 | RCT |
|
| Traumatic brain injury | 32 mothers with children aged 5–16 y, 65.6% male, 19% African American |
Wang G, 2007 | Cross-sectional association |
|
| Generic | NS-CSHCN 2001, nationally representative of CSHCN |
Weiland J, 2003 | Intervention with before-and-after comparison |
|
| Cystic fibrosis | 43 children with cystic fibrosis, 47% of intervention vs 40% of control group has insurance |
Wissow L, 1998 | Cross-sectional association |
|
| Asthma | 104 children with asthma from ED, 60% male, average age 6.3 y, average 4 ED visits in past year |
Wolraich M, 2005 | RCT |
|
| ADHD | 249 children at risk for or with ADHD, 52% African American, 317 teachers |
Young MC, 2005 | Cross-sectional association |
|
| Generic | 719 CSHCN representative of Texas |
Evidence by Endpoint
Health, Mental Health, and Well-Being
Satisfaction
More Efficient Use of Health Care Resources
Access
Communication
Systems Improvements
Improved Transition to Adulthood
Family Functioning
Family Financial Impact and Cost
Summary of the National Survey Findings
Discussion
Family-Centered Care Self-Assessment Tool. Available at: http://www.familyvoices.org/pub/projects/fcca_FamilyTool.pdf. Accessed July 13, 2009.
Advancing the practice of patient- and family-centered ambulatory care: how to get started. Available at: http://www.familycenteredcare.org/pdf/GettingStarted-AmbulatoryCare.pdf. Accessed July 13, 2009.
Achieving and measuring success: a national agenda for children with special health care needs. Available at: http://www.mchb.hrsa.gov/programs/specialneeds/measuresuccess.htm. Accessed November 13, 2009.
Institute for Family-Centered Care. Advancing the Practice of patient- and family-centered ambulatory care: how to get started. Available at: http://www.familycenteredcare.org/pdf/GettingStarted-AmbulatoryCare.pdf. Accessed May 15, 2009.
Acknowledgment
Appendix.
First Author, Year, Type | Population Characteristics | Sample | Interventions/Study Focus | Findings |
---|---|---|---|---|
Baruffi G, 2005, Cross-sectional assoc. | Part of the Hawaii NSCSHCN Sample. Representative of Hawaii. No race/ethnicity data was shown. | 449 CSHCN | They measured FCC from the NSCSHCN's measure of parent provider partnership. | Partnering in the care of their child is associated with reporting that community-based service systems are organized so that families can use them easily, OR = 4.7 (CI 2.0 to 11.0). |
Blumberg SJ, 2009, Cross-sectional assoc. | NSCSHCN. Nationally representative. No race/ethnicity data was shown. | 79,589 CSHCN | Latent-variable association, how different indicators, including family-centered care (with FPP as necessary component) contribute to or affect the ‘Well-being of the health care environment.’ | Better levels of the ‘well-being of the health care environment’ were indicated by the receipt of family-centered care. |
Clark NM, 1998, RCT | MDs were 60% male, 59% <49 years old, 57% were in individual practices, 54% spoke English only. Patients 70% boys, 59% between 2 and 7 years old, 20% have incomes < 20K a year, 30% non white. | 83 MDs responded and met criteria, of those 74 agreed to participate, (1276 letters initially sent). Children enrolled included those age 1–12 with asthma. 637 families responded. | An interactive seminar based on theory of self regulation guiding MDs to examine ways to develop a partnership with their patients. | Intervention MDs reported more treatment with appropriate mediations (e.g. with inhaled anti-inflammatory meds 68% vs. 56% p = .04), more communication (e.g. wrote down how to adjust dose of meds when symptoms change), and spent less time with new patients (23 vs. 27 min.). Parent perceptions of intervention MDs included more reassurance by MD (4.63 vs. 4.42 p = .006) and other outcomes. Changes reported on health services use including fewer nonemergency MD visits (1.24 vs. 2.25 p = .005), follow-up MD visits (.94 treatment vs. 1.61 control p = .005) but no effect on ED or hospitalization use as a whole. Low income children in treatment group had a reduction in ED use. The higher the number of baseline hospitalizations the greater the intervention effect was on reducing hospitalizations and the same is true of ED visits. |
Clark NM, 2000, RCT | MDs were 60% male, 59% <49 years old, 57% individual practices, 54% spoke English only. Patients 70% boys, 59% between 2 and 7 years old. 20% have family incomes <20K a year, 30% non-White. | 67 physicians at long term evaluation (1276 letters sent to MDs to recruit). Final sample of children seen by these MDs is 527. | An interactive seminar based on theory of self regulation guiding MDs to examine ways to develop a partnership with their patients. | Communication and patient education strategies taught in the intervention were used more extensively by treatment group MDs. (For example, MDs wrote down how to adjust dose or timing of meds related to child's symptoms (OR 5.7 p = .05). Parents of patients in intervention group reported MD paid close attention (adjusted mean 4.54 vs. 4.41 p <.04), were commended by the MD for asthma management, physician asked open-ended questions, physician asked about specific fears/concerns with medicine, physician gives me a good idea of the short-term treatment plan, physician makes it easy for us to follow instructions for medications, but there was no difference in physician spending enough time with family. Healthcare use shows that intervention families had fewer hospitalizations (with those with higher baseline hospitalizations having a greater program effect) but no overall reduction in ED use but there was an intervention effect for those with high baseline ED use. No main effects for office visits scheduled or unscheduled but there were interaction effects. |
Denboba D, 2006, Cross-sectional assoc. | Nationally representative. | 37,316 CSHCN | They measured FCC from the 2001 NSCSHCN's measure of parent provider partnership. | Family provider partnership is associated with less missed school, less unmet need for specialty care (OR for never/sometimes feeling like a partner vs. usually/always 3.75 CI 3.23 to 4.30), greater satisfaction, fewer unmet needs, and fewer family unmet needs. |
Farmer JE, 2005, Int. pre- post comp. | Sample of children with complex chronic health conditions. 33% were of racial and ethnic minority. Mean age 7.4 years, 57% male, 83% of mothers had a HS diploma. | 175 referred by physicians in 3 university affiliated clinics. 83 consented and completed baseline research measures. 51 remained in the study for the full year intervention. | Family to family peer support provided as a part of the medical home model with individualized advice given, a care team, care coordination, home visits, and a written health plan. | Improved access to mental health services (29% to 45% got mental health services T1 and T2 respectively); no changes in number of children who received primary, preventive, specialty, inpatient, emergency, or dental services. Were decreases in the number of primary and specialty cared visits. Report of hospitalizations and in-home nursing stayed the same. Satisfaction with care coordination improved but there was a decline in satisfaction with primary care and no change in satisfaction with other health and related services. Family functioning improved on several measures, e.g. the total number of needs (-1.83 difference p = .0013) and child functioning did not change but missed school days were reduced. |
Frost M, 2010, Intv. w/pre-post comp. | No demographic data identified | 39 parents of hospitalized infants and toddlers for pretest, 34 for posttest, 76 staff members for pretest, 51 for posttest | Pretest assessing concerns of parents with children in the hospital unit as well as staff concerns. Intervention of FCC educational program, environmental changes to the unit based on parent/staff suggestions, and unit policy changes to increase family centered environment. Posttest to compare responses. | No statistically significant changes in parent pre-post comparison though some may be clinically significant-parents noted improvement in staff interactions, educational resources, respect for decisions and others. Staff reported statistically significant improvements in inclusion of fathers, and unit improvements as well as clinically significant improvements in recognizing parents as primary decision makers. In addition to the Pre-post test comparisons, Press Ganey Scores showed improvements in all key areas of the project including respect for parent knowledge, teamwork and inclusion in decision making. These improvements were seen both in the post-test scores and the late follow-up. |
Gavin LA, 1999, Cross-sectional assoc. | Mean age 14, 75% White 13% African-American, 10% Hispanic, 50% female, mostly middle class, median length of stay 28 days. | 60 adolescents with severe chronic asthma, 70% response rate. | Goal alliance is the measure of FCC | Adherence with asthma medications was related to the physician's goal alliance and physical defeat alliance (r = .28 p < .05 r = .34 p < .01) Follow-up adherence also related to physicians' goal alliance, physician defeat alliance. Better MD ratings of goal alliance and treatment defeating scales were associated with less urgent office visits in the year post hospitalization but not related to ED visits or hospitalizations. Family functioning related to physician goal alliance and physician defeating alliance in multiple regressions. In similar models, physician goal alliance related to the parent functioning on the behavior control dimension and physician defeating alliance related the quality of the family interaction. |
Guendelman S, 2002,RCT | Primarily a Medicaid population. Mean age was 12, just over 90% of sample has public insurance and over 70% was African-American. | 134 children with ED or hospital visits for asthma (out of 136 screened eligible) | Asthma self-management and education program, “the Health Buddy”, an internet query device a nurse uses to communicate with the family and provide information to health providers. Comparison intervention was a standard asthma diary. | Post intervention significantly fewer children in the Health Buddy program had peak flow readings in the yellow or red zone during the 14 days before the follow-up visit compared to the control (OR = .43 CI .23–.82 p = .01). The same is true for limitations in activity (OR = .52 CI .29–.94 p ≤ .03). The only health services measure that differed was urgent calls (OR = .43 CI .18–.99 p .05). ED and hospitalization results not statistically significant. |
Jessop DJ, 1994, RCT | Children ages birth through 11. 60% Hispanic, 27% African-American; 40% of parents are married; 45% of children live with both parents; 55% have some public assistance income. | 219 children with chronic physical conditions - 178 with complete data. | Home care program - multidisciplinary team that delivers comprehensive services including case management. Team members monitor condition, deliver direct care, ongoing primary care, specialized care in conjunction with specialist, coordinate services, patient education and advocacy. Team involves family in management and decision-making. | For those with out services at baseline, service use increased for both groups but they increased more for the intervention group. Significant results found for listens to concerns and for those with services there were significant results for coordination with other agencies. Other aspects of the results are not statistically significant. |
Mangione-Smith R, 2005, Int. w/ control group | Mean age 8.9 intervention 10.5 control, race/ethnicity 19% and 43% non-Hispanic White, 30% and 23% non-Hispanic African-American, 29% and 22% Hispanic, 22% and 12% other. | 26 practices involved in the ICI intervention 9 agreed to be evaluated. With 4 of the 9 providing comparison sites. 385 children with moderate to severe asthma | A learning collaborative to improve pediatric asthma care using the Improving Chronic Illness Care (ICI) model. ICI model includes organizational/leadership, patient self-management support, delivery system design, provider decision support, clinical information systems, and links to community services. | For 6 of 8 quality indicators and the overall process of care score the scores in the intervention group improved substantially while the control sites showed little or no improvement (overall score difference of difference was 13 p < .0001). Process of care: children in intervention sites are more likely to monitor their peak flow (70% vs. 43% p < .001) and have a written action plan (41 vs. 22% p < .001) compared to control sites. Intervention sites had higher PedsQL 4.0 general QOL, higher asthma quality of life treatment problems, and asthma specific QOL re symptoms scale No difference found on family functioning, adolescent satisfaction, school days, or work loss. |
Ngui EM, 2006, Cross-sectional assoc. | Nationally representative of CSHCN | 36,238 CSHCN | They measured FCC from the 2001 NSCSHCN's measure of parent provider partnership. | Predictors of dissatisfaction include: sometimes or never having each component compared to always or usually predicted dissatisfaction, specifically, inadequate time spent with provider (OR = 1.72 CI 1.20–2.45), provider listening skills, provider gives enough information to the family, sensitive to values and customs, and provider helps family feel like partners in child's care. For models predicting problems with ease of using health care FCC predictors were similar to above. |
Owens JS, 2005, Int. w/ pre-post comp. | 77% met criteria for ADHD of whom 19 met criteria for ODD or CD. | 42 children in kindergarten through sixth grade with inattentive and disruptive behavior problems. | A school-based mental health program that provides an evidence-based treatment package using daily report card which was used in school and encouraged at home. They also had a behavioral parenting series. | For 19 of the 21 parent rated symptom severity and functioning variables there was a trend toward improvements with only 3 statistically significant differences between groups. For teacher rated variables, 7 variables differed between treatment and control. Grades for the treatment group stayed the same while the control group's grades declined (p < .05). |
Palfrey JS, 2004, Int w/ pre-post comp. | About 56% were age 0–5. 38% non-White | 117 CSHCN with severe issues who had data available at 2 year evaluation. (222 invited, 150 met criteria and agreed to participate). | Integrated system of care for CSHCN based on principles of family-centered care and the medical home. Family-centered aspects include: each child had an individual health plan, families served as advisors to the care team, a family newsletter was created. | Families reported that during intervention it was much easier or somewhat easier to obtain health and support services. Families that had more severe problems were more likely to indicate improvement. There was a non-significant increase in satisfaction; more families had a written care plan after the intervention. No difference in the percentages of children with missed school days, or ED visits but there were significant difference in parents' missed work days and hospitalizations. (The more severe group had greater changes and other interactions were significant.) |
Scal P, 2005, Cross-sectional assoc. | Nationally representative of CSHCN age 14–18. | 4426 CSHCN age 14–18 | They measured FCC from the 2001 NSCSHCN's measure of parent provider partnership. | Higher quality of parent-provider partnership was associated with significantly higher scores on the transition scale (coefficient .0831 p <.001) and quality of the parent-provider interaction was one of the strongest predictors in multivariate analyses. |
Smaldone A, 2005, Cross-sectional assoc. | Representative of CSHCN in NY state. | 748 CSHCN | They measured FCC from the 2001 NSCSHCN's measure of parent provider partnership. | Adjusted multivariate results show that FCC (e.g. provider spends enough time OR = 1.9 for usually, 2.9 for sometimes, 7.3 for never vs. always p < .001) predicting delayed/foregone care. |
Stein REK, 1991, RCT | All children enrolled in the original study who were 5 or older at enrollment. 59% Hispanic 33% African-American 8% other. 56 of mothers had less than HS graduation. | Follow-up sample - 81% of original 178 families. | Home care program - multidisciplinary team that delivers comprehensive services including case management. Team members monitor condition, deliver direct care, provide ongoing primary care, specialized care in conjunction with specialist, coordinate services, patient education and advocacy. Team involves family in management and decision-making. | Long term follow up findings - Significant difference in adjustment (as measured by the PARS II) with better changes in adjustment in the experimental group (mean scores - home care 74 vs. standard care 67; p = .009). Higher levels of adjustment on the withdrawal, anxiety/depression, productivity, and hostility subscales with no difference in peer relationships or dependency. |
Van Riper M,1999, cross-sectional assoc. | 95% White, 58% family income between 25K and 55K, mean maternal education 15 years, average age 8 years old. | 89 children with down syndrome of 130 invited to participate | They assessed family provider relationships. | Significant correlations between beliefs about family provider relationship and satisfaction .43 (−≤.01) and family provider relationship and belief-desire discrepancy -.56 (p ≤ .01). Mothers who wanted and believed they had family centered relationships reported better psychological well-being and family functioning. No correlations with depression. |
Wade SL, 2006, RCT | Mean age 10.8 years, 8.8 months since injury, 65.6% male, 19% African American, 53% of mothers had at least a high school education. | 32 mothers of children age 5–16 with moderate to severe TBI | A family-centered, problem solving/skill building intervention including 6 months of 7 biweekly core sessions on problem solving/skill building, 4 individualized sessions. | Intervention group had larger decline in internalizing symptoms 5.81 decline in intervention vs. 2.07 in control (p = .05), anxiety/depression decreased (3.8 in the intervention group and .06 in the control group p = .05), no difference in total symptoms or attention problems based on the CBCL. No difference on BSI global severity and anxiety and depression subscales. |
Wang G, 2007, Cross-sectional assoc. | Nationally representative of CSHCN | NSCSHCN 2001 | They looked at the association between access to genetic counseling for CSHCN and their families and having a medical home | CSHCN with a medical home are 2.70 times more likely to receive genetic counseling than CSHCN without medical homes (95% CI: 1.58, 4.61; p ≤ .001). Family centered care was the only element, out of four, comprising medical home that was significantly associated with receiving genetic counseling. |
Weiland J, 2003, pre-post comp. of interv. | Mean age about 17, 47% of intervention vs. 40% of control group has insurance. | 43 children with CF for clinical outcomes | Team to address concerns of patients with CF at a hospital especially telling teens what would happen to them and working out negotiable parts of the schedule together on a day to day basis. | Found no difference in airway clearance, or the proportion of days patients received all airway clearance treatments as ordered. No difference in physical therapy treatments given as ordered or the proportion who got at least 75% of treatments. |
Wissow L, 1998, Cross-sectional assoc. | 60% male, mean age 6.3 years, average of 4 ED asthma visits in past year. | 104 children with asthma recruited in the ED. Children had to live in census tracts with 20% or more households below poverty and between 4–9 years old. | They looked at patient-centered provider style in the ED. | Parents gave more medical and psychosocial information to parent/patient centered providers. Overall parent satisfaction was not related to a child having a parent/child centered provider, but parents in visits with a child/patient-centered provider were more likely to be “very satisfied” with the MDs job, to consider the MD to be more informative. |
Wolraich M, 2005, RCT | 52% were African-American. | 1536 children with or at risk of ADHD were eligible with final sample of 249 also 317 of 975 teachers participated by completing behavior rating scales (VADTRS) on all students in their classrooms. | 1) A manual and seminar on how to diagnose and treat ADHD for PCPs. 2) Treatment group students had a parent, teacher, and or PCP attend a single one on one session with a trained representative about communication about ADHD (based on model of academic detailing). | Workshop approach did not have enough participants to estimate it. The PCP intervention associated with a significant increase in PCP school communication (p = .04) but over time the difference declined to non significance. Effectiveness of intervention with parents and teachers was not significant. Of 20 analyses 1 met Bonferonni corrected significance (p < .0025) the intervention with PCP leads to an increase in parental communication with other physicians followed by subsequent decline. Basically there were no effects on behavioral symptoms (1 of 32 a number that could be due to chance alone). |
Young MC, 2005, Cross-sectional assoc. | The sample is representative of Texas. | 719 CSHCN | They measured FCC from the NSCSHCN's measure of parent provider partnership. | Respondents who reported that MDs were sometimes sensitive to family values/customs were three times more likely to report that they needed a specialist and nine times more likely to experience problems in obtaining a referral to a specialist compared to those whose MDs were always sensitive. Respondents who never or sometimes obtained enough information about medical problems were more likely to face problems obtaining referrals than those who always did. But respondents who reported that MDs never spent enough time with them were significantly less likely to have problems obtaining a referral to a specialist than those with MDs who always spent enough time (this last result was opposite than expected but it was small). |
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Footnotes
The authors have no conflicts of interest to disclose.