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Care Coordination: Empowering Families, a Promising Practice to Facilitate Medical Home Use Among Children and Youth with Special Health Care Needs

Care Coordination: Empowering Families, a Promising Practice to Facilitate Medical Home Use Among... Introduction This paper describes the care coordination training program and results of an evaluation from its pilot in seven states. Despite the importance of practice-based care coordination, only 42.3% of children with special health care needs (CYSHCN) met all needed components of care coordination as defined by the Maternal Child Health Bureau. Recognizing that children with medically complex conditions often have lower rates of achieving care coordination within a medical home, the Region 4 Midwest Genetics Collaborative worked with families to develop a training to empower families in care coordination. The Care Coordination: Empowering Families(CCEF) training provides families with the knowledge, tools, and resources to engage with health, education and family support systems. This article gives an overview of the training and comprehensive evaluation. Methods Participants were family caregivers of children with genetic conditions and other special health care needs recruited in one of seven pilot states. Evaluation data were collected from 190 participants prior to and immediately following the training. An additional follow-up assessment one full year post training was completed by 80 participants (a response rate of 42%). Results Families who attended the training report being the primary source of care coordination for their children and 83.7% see their role in their child’s healthcare changing as a result of the training. The findings suggest that peer support and communication with providers increased as a result of the training over the course of the study. The data suggest that the training impacted how the family interacts with the child’s doctor, including initiating conversations to prepare their child for transition to adult health care. Further, families report system-level improvements 1 year later compared to the pre-training assessment. Discussion CCEF training is a promising practice for facilitating medi- cal home use among CYSHCN. Keywords Care coordination · Medical home · Training · Families · CYSHCN Significance home. This paper describes a training designed to empower parents as the main coordinator of their child’s care in the Effective care coordination has been associated with posi - event that the care providers do not or cannot offer coordina- tive outcomes for families and children, and it is generally tion support. The comprehensive evaluation of the training expected that healthcare professionals will provide care shows that parents can bring about positive change when coordination services as part of the family-centered medical they have the knowledge, skills, and resources for interacting with the healthcare system. * Lisa Gorman Ufer lgorman@mphi.org Introduction Michigan Public Health Institute, 2501 Jolly Rd. Suite 180, Okemos, MI 48864, USA Children or youth with special health care needs (CYSHCN) are described by the Maternal and Child Health Bureau Region 4 Midwest Genetics Collaborative, Okemos, MI, USA (MCHB) as “those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional Department of Psychology, Malone University, Canton, USA Vol:.(1234567890) 1 3 Maternal and Child Health Journal (2018) 22:648–659 649 condition and who also require health and related services of available in medical practices and gaps may exist among a type or amount beyond that required by children generally” medical offices and other services (e.g., education, hous- (McPerson et al. 1998). These families often manage multi- ing, transportation, respite) that children with complex ple systems of care (e.g., primary, specialists, therapies, edu- conditions may need. The AAP Council on Children with cation) without a central entry point (AAP 2005). A Medline Disabilities 2005 policy statement affirms that families of review of publications found that patients with five or more CYSHCN should have the opportunity to lead and/or be pro- chronic conditions may encounter up to 14 physicians in one active participants of their child’s care coordination team. calendar year (Vogeli et al. 2007). Given this complicated Traditionally, the onus has been on healthcare professionals landscape, effective care coordination across care providers to provide care coordination services as part of the medical is paramount for families of CYSHCN to maintain their chil- home (e.g., McAllister et al. 2007; Committee on Hospital dren’s optimal health by avoiding fragmented or duplicated Care and Institute for Patient-and-Family-Centered Care healthcare services. For families with children with com- 2012; Gupta et al. 2004; Moore and Tonniges 2004). While plex conditions (e.g., genetic conditions identified through many of these initiatives involve families in phases of plan- newborn screening), both the need for, and burden of, care ning and implementation, few focus on supporting parents as coordination is even greater (Cooley et al. 2013; Kuo et al. the main coordinator of their child’s care, a role that families 2011; Golden and Nageswaran 2012). often l fi l if care providers do not or cannot oe ff r coordination This paper describes a care coordination training that support (Gupta et al. 2004; Berry 2015). To fulfill this role, empowers families and results of an evaluation from its pilot families need adequate knowledge in their child’s condition, in seven states. Effective care coordination, which facilitates care coordination skills, knowledge of the medical home the linkage of children and their families with appropriate concept, and access to healthcare resources. The need for services and resources to achieve good health (COCWD additional knowledge and skills was identified as a priority 2014), has been associated with positive outcomes for fami- for families in the Region 4 Midwest Genetics Collabora- lies and children (Lawson et al. 2011; Farmer et al. 2011; tive (Region 4 Midwest) and led to the development of the Turchi et al. 2009; Miller et al. 2013). In a survey of 780 training, CCEF. patients, care coordination was endorsed as one of the most important elements of the family-centered medical home (Wexler et al. 2012). Theoretical Model Despite the broad consensus around the importance of practice-based care coordination, especially for CYSHCN, Bioecological theory (Bronfenbrenner 1977; Bronfenbren- many barriers keep practices from offering it (McAllister ner and Morris 2006) was the framework for CCEF cur- et al. 2007). In the U.S., only 42.3% of CYSHCN met all riculum development, operationalization and evaluation. components of care coordination as defined by the Maternal As depicted in Fig. 1, the children and youth with special Child Health Bureau (NS-CSHCN 2009/10). Children with health care needs (CYSHCN) are seen as part of a dynamic more medically complex conditions often have lower rates developmental system wherein relations among levels are of achieving care coordination within a medical home, as the seen as the basis of development. By taking a systems and ideal location of a medical home might shift over time (e.g., family-centered approach to the training, Region 4 Mid- between specialists and primary care; Raphael et al. 2013). west recognized the strength and capabilities of families, In the U.S., it is estimated that 43.0% of all CYSHCN have promoted greater parent/professional partnership with the a medical home, compared to only 34.6% of those children healthcare and service delivery systems, and empowered with complex needs (National Survey of Children with Spe- parents as a way to provide help and information in relation cial Health Care Needs 2009/10). A lack of effective care to the coordination of care for their children (Dunst et al. coordination may have a profound effect on higher needs 2007). Region 4 Midwest aimed to develop an intervention patients whose conditions may require long term follow-up that would empower families to engage with the healthcare care with specialists (Sahai et al. 2010). system which is achieved by increasing the parents’ knowl- edge about medical homes and care coordination through the Purpose training, and specifically by empowering them as experts of their children. As a result, Region 4 Midwest expected that This paper describes the Care Coordination: Empowering the CCEF training curriculum would change the way that Families (CCEF) training and results of an evaluation from families interact with the systems that promote better health. its pilot program in seven states. The program was devel- oped at the request of and with family stakeholders who reported being the only consistent managers of care for their CYSHCN. Effective care coordination is not universally 1 3 650 Maternal and Child Health Journal (2018) 22:648–659 Fig. 1 Illustration of CCEF and support in CYSHCN systems with the ecological model children who have been identified as having either a genetic Development of a Family‑Centered Care condition or special health care need. Participants were pro- Coordination Training vided a $150 gift card in recognition of their investment of time and to assist with transportation and childcare costs. The CCEF training curriculum, implementation plan, Take-home materials include a participant workbook with recruitment strategies, training evaluation, and sustain- additional resources, Partnering with your Doctor: The ability plan were developed in close collaboration with Medical Home Approach booklet and a personal journal. the Family Forum of Region 4 Midwest (a group of parents The CCEF training curriculum includes eight core train- of children with genetic conditions) and clinical partners ing components with 16 learning objectives, each aimed from seven states. The curriculum includes activities and toward accomplishing MCHB core outcomes. Figure  2 opportunities within the training day to develop skills illustrates the relationship of training objectives to intended and use tools aimed at increasing parenting self-efficacy outcomes and provides examples of training activities. The (Dunst and Trivette 2009) and equips families with the training highlights the significance of family-professional knowledge and belief that they can influence events that partnerships in both training content and by using a parent/ affect the health and development of their children. professional facilitation team (at least one facilitator must be a parent of a child with a genetic condition or other spe- Training Model cial health care need). The importance of peer support for parents of children is emphasized by developing a commu- The 8 h, interactive training can be provided to up to 25 nity of parents with common experiences and needs in the participants at one time. Participants should be parents of 1 3 Maternal and Child Health Journal (2018) 22:648–659 651 Fig. 2 CCEF objectives with examples of training activities as they relate to MCHB core outcomes training itself (Shilling et al. 2013 for review). In addition to training objectives were met, assess readiness for change, meeting parents who have a shared social identity, the train- and to improve the quality of the training. This survey was ing provides an opportunity to learn practical information distributed in paper format immediately after the training. and be inspired by others with similar experiences. Participation in the training and evaluation of the training was voluntary. Participants were encouraged to complete three surveys to help us improve our training and measure if Methods we accomplished our training goals. Parent coordinators partnered with families and organiza- Procedure tions such as Family to Family Health Information Center, Title V, Sickle Cell Disease Associations, Family Voices, Evaluation procedures were approved by the Michigan Pub- clinics, and hospitals to recruit participants. To be eligible lic Health Institute Institutional Review Board. Data were to participate in the training, individuals had to identify collected from training participants at three time points: themselves at registration as a parent or primary caregiver pre-assessment, post-training (immediately after training), of a child with a genetic condition. After the initial training and 1 year follow-up. Participants were asked to create a funded by the genetics collaborative, partners expanded the personal identification code using a series of three ques- inclusion criteria to include parents and caregivers of all tions to link surveys across time without accessing identifi- CYSHCN. able information. The pre-assessment and 1 year follow-up surveys mirror each other to evaluate long-term training Participants impact. Participants completed both of these surveys online (paper copies were mailed upon request). Study data were A total of 190 caregivers participated in one of ten CCEF collected and managed using Research Electronic Data Cap- trainings in 2013. All training participants completed the ture (REDCap), a secure, web-based application designed to pre and post-training assessments, and 80 participants (42% support data capture for research studies (Harris et al. 2009). response rate) completed the 1 year follow-up assessment. The intent of the post-training survey was to determine if Respondents to the follow-up survey did not differ across 1 3 652 Maternal and Child Health Journal (2018) 22:648–659 Table 1 Participant Variable Pre-assessment 1 Year demographic characteristics N = 190 follow-up at pre-assessment and 1 year N = 80 follow-up Child’s age in years  Mean (SD) 8.9 (5.7) 9.6 (5.3)  Range 0–27.0 1.0–28.0 Average age of diagnosis in years  Mean (SD) 1.8 (2.5) 1.9 (2.6)  Range 0–12.0 0–12.0 Number of health conditions (check all that apply)  Mean (SD) 2.4 (1.9) 2.3 (1.8)  Range 0–9 0–8 Number of developmental conditions (check all that apply)  Mean (SD) 1.4(1.8) 1.3 (1.7)  Range 0–7 0–7 Race and ethnicity (check all that apply)  White 76.5% 77.1%  Black 20.5% 20.0%  Asian 1.8% 2.9%  American Indian or Alaskan 0.6% 1.4%  Arabic 0.6% 0%  Other 1.0% 0%  Hispanic 6.0% 7.0% Income  < $20,000 26.6% 22.5%  $20,000–$30,000 11.7% 8.8%  $30,001–$40,000 14.4% 15.0%  $40,001–$50,000 10.6% 8.8%  > $50,000 36.7% 45.0% Insurance (check all that apply)  Medicaid 65.8% 61.3%  Employer/union 47.9% 53.8%  S-CHIP (state) 10.0% 18.8%  Military 0.5% 0%  Uninsured 1.6% 1.3%  Other 6.8% 10.0% Number of children in home  Mean (SD) 2.4 (1.4) 2.5 (1.4)  Range 0–10 1–6 Six participants reported 0 children living in the home. These participants were other caregivers, step- parents, or parents of an older child who was currently living outside of the home many demographic variables compared to training partici- recruitment efforts to improve access to genetic services for pants who did not respond (see Table 1). Further, respond- underserved populations, nearly one in four training par- ents and non-respondents to the follow-up had similar rates ticipants identified with a minority race or ethnic group. of achieving the MCHB core outcomes at pre-assessment. Indeed, White participants are slightly under-represented The participants’ children with special health care needs (76.5% CCEF compared to 82.4% seven-state population) represented a wide range of genetic and other medical con- and Black participants over-represented (20.5% CCEF com- ditions and developmental delays. Distribution of racial pared to 9.9% seven-state population) in the CCEF partici- groups is comparable to the population in the seven-state pant sample. Participants represented a broad spectrum of region based on U.S. Census Bureau (2010). As a result of income levels. 1 3 Maternal and Child Health Journal (2018) 22:648–659 653 Table 2 Measures and data collection schedule for CCEF evaluation Measure Number of Type Pre-assessment Post-training 1 Year items follow- up Demographics and child’s health condition(s) 8 Multiple choice ✓ ✓ Training quality  Satisfaction 4 4-point Likert scale ✓  Content knowledge 10 Multiple choice ✓  Suggestions to improve training tools 1 Open ended ✓ ✓  Training objectives met 16 5-point Likert scale ✓ Training impact  Readiness for change 2 4-point Likert scale ✓  Plans to use training information 1 Open ended ✓  Care coordination skill level 6 4-point Likert scale ✓ ✓  Use of training tools 5 Multiple choice ✓  Change attributed to training 6 4-point Likert scale ✓ System-level change  Question from National Survey of Children with 44 Likert scale ✓ ✓ Special Health Care Needs Multiple choice Participants’ perception as to whether training objectives Assessment and Measures were met were assessed using 16 items. The assessment used a 5-point Likert scale ranging from “Strongly Disagree” to The evaluation tools assessed the training from several per- “Strongly Agree.” Items include topics covered in the cur- spectives. Table 2 provides an overview of measures and riculum (e.g., “After today’s training I can identify the com- the data collection schedule. First, a post-training assess- ponents of a Medical Home”; “After today’s training I have ment was used to understand training quality and provide increased knowledge of the Patient Protection and Afford- opportunity for quality improvement efforts in the pilot. The able Care Act (ACA) as it applies to CYSHCN”; and “After post-training assessment included measures of training satis- today’s training I understand the need to plan for child’s faction, content knowledge, and training objectives. Second, transition to adulthood”). training impact was assessed on three levels: readiness for change, care coordination skill level, and changes in care Training Impact coordination attributed to training. Finally, systems-level change was assessed to understand if increasing caregiver Readiness for change using two Likert-type items and an competence might impact the care they receive. Participants open ended question was assessed following the training. also responded to a series of questions on general demo- The 4-point Likert scale ranges from “Definitely” to “Not at graphics, type of insurance, and child’s health conditions. all” on “Do you see the role you play in child’s healthcare changing as a result of this training?” and “How likely are Post‑training Quality Improvement you to include new individuals on your child’s care team?” Participants also provided written responses to how they At the post-training assessment, participants responded to might use the information from this training to improve care questions about the degree to which they were satisfied with coordination for their child in the future. the training as a whole and with the facilitators (responses Care coordination skill level was assessed at two times on a four-point Likert scale from “Very Satisfied” to “Very to compare their perception prior to training and the 1 year Dissatisfied”). Participants provided written response to an follow-up. The participants report skill level on their com- open-ended question about what suggestions they had to munication with doctor on 4 point Likert-type scale with improve the training. To assess whether the training was responses ranging from “Very comfortable” to “Uncom- sufficiently teaching intended content, participants were fortable.” Participant responded to questions as it relates to asked to respond to ten multiple choice items around con- their comfort with “Asking questions during a medical or tent addressed in the training. Items ask about a range of healthcare appointment,” “Determining the best commu- topics covered including definitions of a Medical Home, nication method to use with your child’s doctor or health- importance of transition to adult care, communicating with care provider,” “Contacting your child’s doctor or other healthcare professionals, and navigating health insurance. 1 3 654 Maternal and Child Health Journal (2018) 22:648–659 healthcare provider to get advice in between face-to-face “agreed” or “strongly agreed” that they had opportunities appointments,” and “Reflecting on the appointment after it to contribute to the conversation during the training. When occurs to determine if you got the answers you needed.” asked what could be improved about the CCEF training, the Responses to ability to organize information (1 item) and majority of participants explicitly said they would change peer support (1 item) were also a 4 point Likert-type scale nothing. with responses ranging from “Very well” to “Not at all” in response to “How well do you feel you organize informa- Content Knowledge tion?” and “Describe how well the peer support you cur- rently have in-place meet your needs.” On average, participants answered 89.0% of items correctly A final measure of change attributed to the CCEF train- on the 10 quiz-style items to assess understanding of core ing participation was 6-items collected in the 1 year follow- training content following the training (M = 88.9; SD = 13.4). up survey. This Likert-type scale has four possible responses A general linear model was used to understand if quiz scores including “No, I didn’t change anything,” “I made a few varied by race, ethnicity, or income. Participants scores changes,” “I made many changes,” and “Doesn’t apply; I significantly varied by income levels (F(4,145) = 2.48, didn’t need to make changes.” Participants responded to p = .046). Post-hoc comparisons of the income groups using behavior changes they perceived as a result of the training. a Bonferroni correction showed that participants in the low- Questions include: “Did you make any changes to how you est income category (< $20,000: M = 83.27, SD = 16.5) communicate with your child’s doctor(s) as a result of the scored significantly lower than participants in the high- training?” “Did the training prompt you to start a conver- est two income brackets ($40,001–$50,000: M = 92.82, sation with your child’s doctor(s) about transition to adult SD = 8.98, p = .038; > $50,000: M = 92.08, SD = 11.79, care?” “Did you change how you manage your child’s health p = .006). Hispanic participants scored significantly lower insurance as a result of the training?” “Did you make any than other participants (Hispanic: M = 81.78, SD = 16.23; changes to how you organize your child’s health information Others: M = 88.77, SD = 13.80; F(1,164) = 4.41, p = .037). as a result of the training?” “Did you make any changes to No significant differences among additional racial groups your peer supports as a result of the training?” and “Did you and no significant interactions were found in the sample. change how you take care of yourself as a result of the train- ing?” The evaluation used two additional items that assessed CCEF Objectives Met participant’s use of 11 care coordination tools in the past year that were a part of the training curriculum. Participants strongly endorsed that the 16 training objec- tives were met (80.9–100% on individual objectives). The System‑Level Services only two objectives receiving an endorsement under 90% were associated with insurance (increased knowledge of the Question from the National Survey of Children with Spe- ACA as it applies to CYSHCN, and techniques for dealing cial Health Care Needs (NS-CSHCN) was used to assess with denied insurance claims). The mean of all objectives the child’s access to health care services including medical was 4.57 (SD = 0.38) on a five point scale with higher val- home, adequate health insurance, care coordination, access ues indicating stronger agreement that objectives were met. to needed services, transition planning and shared deci- Responses to objectives were compared across race, ethnic- sion making. The NS-CSHCN questions were administered ity, and income categories using a general linear model to during the pre-assessment and the 1-year follow-up to the understand if participants from different backgrounds had training. All MCHB outcomes were constructed using the different perspectives on the efficacy of the training. There Child and Adolescent Health Measurement Initiative’s SPSS were no significant differences among these groups. codebook (CAHMI 2012). Training Impact Results Readiness for Change on Post‑training Assessment Training Quality The majority of participants (88.9%) respond they were either “definitely” or “somewhat” likely to include new Satisfaction individuals on their child’s care team and 83.7% reported they either “definitely” or “somewhat” saw their role in Participants report a high level of satisfaction with the train- their child’s healthcare changing as a result of the training. ing with 99% reporting “satisfied” or “very satisfied” with These items were not significantly correlated with the num- the training and the trainers. In addition, 99% of participants ber of people currently helping them with care coordination. 1 3 Maternal and Child Health Journal (2018) 22:648–659 655 African American participants were more likely to endorse Table 4 Participants’ attributed behavior change to CCEF training at 1 year follow-up (N = 80) the most positive response option by reporting they “defi- nitely” saw their role in their child’s healthcare changing Care coordination skill Made changes due to training as a result of the training (76.5% compared to 51.5% of (%) other participants, χ (3,166) = 8.54, p = .036). There were no other significant differences in responses to these items Organization of child’s health information 83.8 by race, ethnicity, or income. When asked how they will use Peer support 60.1 information from the training to improve care coordination, Communication with care providers 72.5 qualitative analysis of participants’ responses reflected the Navigating insurance 46.3 following themes: organization of child’s health informa- Self-care 65.1 tion (35.3%), insurance (18.8%), medical home (18.8%), Transition 71.0 resources (18.8%), advocacy (17.6%), communication (12.9%), and transition (10.6%). the training, with 25% of participants reporting they had Care Coordination Skills remained in contact with someone from the training. When asked explicitly about transition planning, 71% of families Participants’ responses to items about care coordination- with children 12 years or older said the training prompted related skills (organization of child’s health information, them to have a conversation with their healthcare provider peer supports, and communication with care providers) about transition in the past year. There were no significant before and 1 year after the training are reported in Table 3. differences among race, ethnic, or income groups. Participants’ reports of peer support and communication with care providers increased at statistically significant lev - Systems‑Level els from the pre-training to 1 year follow-up assessments. Family income, race, ethnicity, number of health conditions, The pre-assessment and 1  year follow-up surveys meas- and number of people helping with care coordination were ured five of the six MCHB core outcomes to test whether not significantly associated with the skills at follow-up. the CCEF training would empower families to bring about change in their child’s healthcare system. At pre-assessment, Change Attributed to CCEF there were few significant associations between demo- graphic factors (race, income, family size, age of child with Participants reported that the training inspired them to genetic condition, and number of child’s health conditions) make changes to their care coordination-related skills and and the likelihood that a participant would meet the MCHB activities (organization, peer support, communication with outcome. Participants who did not meet MCHB outcome #5 care providers, navigating insurance, and self-care), even (access to community-based services) were more likely to if they already rated themselves as highly skilled in these 2 be White (χ (1,110) = 7.51, p = .006). areas (see Table 4). Participants reported using an average We wanted to understand how the CCEF participants of three resources from the training (M = 3.05, SD = 1.98) compared to the national sample from the NS-CSHCN. in the past year. Local tips and resources that were collected It became clear that the percentage of CCEF participants from participants during the training and the Region 4 Mid- achieving the MCHB outcomes at pre-assessment was west’s publication, Partnering with Your Doctor: The Medi- significantly lower than the national sample. Given the cal Home Approach Guide were the most frequently refer- medical complexity of the children in the CCEF sample, enced resources. Peer networks were also sustained after we looked at national survey sub-groups that might be a Table 3 Participants’ perception a Care coordination skill Care Coordination: Empowering Families (CCEF) follow- of care coordination skills up respondents (N = 80) Prior to CCEF 1 Year follow-up F p M(SD) M(SD) Peer support 2.69 (0.80) 3.05 (0.74) 13.29 < .001 Communication with care providers 3.37 (0.54) 3.57 (0.56) 7.39 .008 Organization of child’s health information 3.01 (0.70) 3.14 (0.67) 2.55 .11 Four point Likert scale with 4 being more positive and 1 being least positive 1 3 656 Maternal and Child Health Journal (2018) 22:648–659 Fig. 3 MCHB Core outcomes: 44.2% 60.3% CCEF Participants comparing care coordination Families as Partners participants with National NSCSHCN: Children with Survey of Children with Special 37.4% 51.4% complex conditions Healthcare Needs respondents Adequate Insurance qualified on 4 or 5 screener criteria 32.5% 41.1% Access to services 10.0% 25.7% Medical Home 0.0% 0.0% 0.0% 22.1% Transition 0.0% 10.0% 20.0% 30.0% 40.0% 50.0%60.0% 70.0% better comparison. The closest sub-group we could find that Participants’ reports of the help they receive with care mirrored “medical complexity” was the breakdown of the coordination did not significantly change a year after the national sample based on the number of screener items they training. The majority of participants (73.2%) reported that qualified for (1, 2, 3, and 4 or 5). When compared with the no one else helps them coordinate care for their child. Prior most medically complex group (those who qualified for 4 to the training, 6.3% of participants report one care coordina- or 5 screener criteria), the CCEF sample still had signifi- tor, and 20.5% report having two or more care coordinators cantly lower rates of meeting every MCHB core outcome for their child. One year later, this picture had not changed (Families as Partners: t(3601) = 6.03, p < .001; Medical significantly—69.5% reported that no one else helps them Home: t(1613) = 10.18, p < .001; Adequate Insurance: coordinate care, 2.4% have one care coordinator, and 26.8% t(3002) = 4.84, p < .001; Access to Services: t(2431) = 6.93, had two or more care coordinators for their child. Reports p < .001; Transition: t(519) = 20.24, p < .001; see Fig. 3). of help with care coordination did not significantly vary by We used repeated measures general linear models to race, ethnicity, income, or number of child’s health condi- compare the percentage of participants who met the MCHB tions. Family caregivers who do have help listed between 1 outcomes before and 1 year after the training (see Table 5). and 12 individuals as people who actively help coordinate Outcome #3 (adequate insurance) reached statistical signifi- care. These individuals were most likely to be a family mem- cance. The likelihood of meeting outcome #3 1 year after ber or someone in a doctor’s office. Participants still aver - the training was not associated with insurance type (private, aged around one person at follow-up (M = 0.94, SD = 1.79) public, or both) or reports of changes to insurance over the compared to pre-assessment (M = 0.81, SD = 1.66). past year (including changes due to the ACA). Outcome #1 (families are partners in decision making) was a statistical trend. Table 5 Participants’ rates of meeting MCHB core outcomes at pre-assessment and 1 year follow-up MCHB core outcome CCEF follow-up respondents (N = 80) Pre-assessment 1 Year follow-up F p Families of CSHCN are partners in decision-making for child’s optimal health 43.8% 57.1% 3.64 .06 CSHCN receive coordinated, ongoing, comprehensive care within a medical home 6.3% 11.4% 1.34 .25 CSHCN have adequate private and public insurance to pay for the services they need 30.0% 53.8% 15.93 < .001 Community-based service systems are organized so CSHCN can use them easily 31.4% 41.7% 0.28 .60 Youth with special health care needs receive services necessary to make a successful 0% 8.7% 2.13 .16 transition to adult life (age 12 and older ) There are 23 children aged 12 and older at pre-assessment and 28 at 1 year follow-up 1 3 Maternal and Child Health Journal (2018) 22:648–659 657 parent-to-parent programs, the experiential learning helps Discussion connect families with each other (Hartman et al. 1992) and support each other through reciprocity of emotional and Training Efficacy informational support (Santelli et al. 1997). These impor- tant connections help families who are raising children with The CCEF training curriculum is unique in that it targets complex health needs feel part of a broader community. families as the agents of change within the larger ecologi- The local connections made at the training provide another cal context of their child’s healthcare. When families are important point of contact for families. Indeed, 1 year later, educated about the systems they need to navigate and their 25% of participants reported being in contact with other role and power within them, they can bring about positive families they met at the training. These connections may change in how they interact with the systems that support be especially important for families who have children with their children. Participants’ reports of increased peer support undiagnosed or rare conditions (around 23% of all training and better communication with healthcare providers in the participants), who may not have a condition-specific support year since the training are examples of parents as agents of network to participate in. change. Qualitative responses from participants suggest that The comprehensive evaluation demonstrates that four education around key systems (such as insurance) and con- out of five participants met all training objectives. Partici- cepts (such as medical home), made them reconsider their pants have shown an increase in key knowledge and skills roles as caregivers and resulted in their becoming more pro- areas such as care coordination, medical home, transition, active in the coordination of their children’s care. A powerful advocacy, importance of self-care, evaluating resources, and example of parents being proactive is seen in findings around navigating health insurance. Besides significant differences planning for transition to adult care. While the overall rate in insurance from the pre-assessment to 1 year follow-up, a of families who met the MCHB transition outcome (based notable trend is impact on parents as partners in decision- on reports of physicians’ behavior) remained low, 71% of making for the children’s health. A significant difference in families with children 12 years or older (n = 28) reported communication with care providers from the pre-assessment initiating conversation about transition after training. and 1 year follow-up further supports the trend of parents In an effort to improve access to care for underserved as partners in decision-making. Based on participant self- populations, the Region 4 Midwest staff incorporated prin- reports of positive effects of the training at 1-year follow ciples of health equity during training development, recruit- up, it is likely that improved confidence and proficiency in ment, and implementation. Evaluation results demonstrated interacting with systems that support their children persist few significant differences across race, ethnic, and income over time. groups. Where differences were found, they did not point to a consistent bias, suggesting that training efficacy was Lessons Learned found across a broad range of participants. Of most con- cern is the finding that participants from the lowest income Some evaluation results illustrated areas where the cur- level and Hispanic participants scored significantly lower on riculum and additional support for participants may be the post-training quiz items assessing training content. To warranted. For example, feedback from the training objec- improve the quality of the training for Hispanic participants, tives indicates need to expand the ACA/insurance content. some modifications have been made to the curriculum and A supplemental training or linking participants to a patient evaluation material, including translating the curriculum and navigator for individualized assessment of insurance cover- evaluation material for Spanish speaking participants. The age, needs and denied claims might improve access issues. Spanish version of the curriculum has not been pilot tested. Participants’ reporting the intention of adding new partners Further, it should be noted that our target was a seventh to help with care coordination immediately after the training grade reading level. Although reading level is sometimes did not align with reports of actual care coordination support confounded by inclusion of health condition names. Further 1 year later. study is needed to determine if some participants had trouble Use of MCHB core outcomes as measured by NS CSHCN understanding the questions, or if this pattern of findings provides an excellent comparison to understand training par- indicates that some participants need additional outreach ticipants and growth over time. However, these items assess and support in order to effectively apply the CCEF training participants’ experiences with their healthcare providers, not curriculum to their lives. necessarily their own experiences coordinating care for their One of the important ways families are empowered children. Region 4 Midwest searched for other established through the training is by networking with peers. The measures that would assess the caregivers’ experience more training format requires participants to interact with peers closely. Ultimately, the evaluation team had to consider the throughout a full day of facilitated activities. Like other importance of using normed and validated measures while 1 3 658 Maternal and Child Health Journal (2018) 22:648–659 keeping the burden on participants reasonable. Increases similar benefit across race and ethnicity. By empowering in meeting the core outcomes may reflect an awareness of caregivers with knowledge and skills related to care coor- expectations for their provider due to the training. Several dination, these caregivers are more able to affect positive participants mentioned such a change after learning about change within their child’s healthcare systems. By partner- the medical home concept. We should also note that the ing with HRSA funded programs and family and disease evaluation tool has gone through several iterations since the specific organizations in the recruitment of training par - pilot with even greater input from family participants about ticipants, the training curriculum shows promise for use by the evaluation design. these initiatives and others in addition to genetic services and the regional genetic networks. With a pilot expansion Limitations effort already underway, CCEF may become an evidenced- based training that certified facilitators from other HRSA Self-report data are always liable to response biases. How- grantees can use to improve core outcomes for clients they ever, the present evaluation shows no more concern than serve. other similar designs. There is no indication that these data Acknowledgements We would like to acknowledge the following were of more concern with the present evaluation than with members of the Region 4 Midwest Genetics Family Forum who con- other similar designs. Attrition in long-term follow-up is tributed to the curriculum development and implementation: Talana a common problem in longitudinal studies. The 1  year Hughes, Zina Berryhill (Illinois); Angela Paxton, Mary Jo Paladino, Beth DeHoff (Indiana);Debbie Gilbert; Sondra Gilbert, Cristina Kur - follow-up assessment had a 42% response rate. Additional vers (Kentucky); Amy Clugston, Debbi Henry, Sandy Laprad, Scott analysis suggest that there were no significant differences Newport (Michigan);Jennifer Arveson, Pat Lang (Minnesota); David in demographics or satisfaction with the training for those Entwistle, David Hoffman, Allison Kingsley (Ohio); Kara VanVooren participants that did and did not complete the 1 year post (Wisconsin); and Kristen Hawkins (Parent Coordinator). Other contrib- utors include Lisa Huckleberry and Traci Reihl. This project was sup- training assessment. While the response rate is respectable ported by the Health Resources and Services Administration (HRSA) for an evaluation eo ff rt one full year after participation in the of the U.S. Department of Health and Human Services (HHS) under training, there may be opportunity to improve the response grant number H46MC24092, Genetic Services Project awarded to the rate by maintaining contact with participants throughout the Michigan Public Health Institute. This information or content and con- clusions are those of the author and should not be construed as the year, requesting updated contact information, and provid- official position or policy of, nor should any endorsements be inferred ing incentives to complete the follow-up survey. The CCEF by HRSA, HHS or the U.S. Government. pilot was limited to participants from seven states within the Midwest region. Compliance with Ethical Standards The small sample size and geographic location of the pilot limit the generalizability of the findings. Further evaluation Conflict of interest The authors have no conflicts of interests or corpo- efforts should include larger samples from other regions to rate sponsors to disclose. see if training outcomes can be replicated in other regions Open Access This article is distributed under the terms of the Crea- of the country and with other facilitators. Another limitation tive Commons Attribution 4.0 International License (http://creat iveco is the lack a control group in the evaluation design. This mmons.or g/licenses/b y/4.0/), which permits unrestricted use, distribu- project could benefit from funds to conduct a randomized tion, and reproduction in any medium, provided you give appropriate control trial to determine whether care coordination skills for credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. participants completing the training are significantly differ - ent than similar parents who do not have access to CCEF. A randomized control trial with a larger sample size will be an important next step in moving this promising practice toward References an evidenced-based intervention. American Academy of Pediatrics. (2005). Care coordination in the medical home: Integrating health and related systems of care for children with special health care needs. Pediatrics, 116(5), Conclusions for Practice 1238–1244. Berry, J. G. (2015). 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Multiple chronic conditions: Prevalence, Hartman, A. F., Radin, M. B., & McConnell, B. (1992). Parent-to- health consequences, and implications for quality, care manage- parent support: A critical component of health care services for ment, and costs. Journal of General Internal Medicine, 22, 391– families. Issues in Comprehensive Nursing, 15, 55–67. https://doi. 395. https ://doi.org/10.1007/s1160 6-007-0322-1. org/10.3109/01460 86920 90782 40. Wexler, R. K., King, D., & Andrews, M. (2012). Comparison of patient Kuo, D. Z., Cohen, E., Agrawal, R., Berry, J. G., & Casey, P. H. (2011). and physician opinion of patient centered medical home funda- A national profile of caregiver challenges among more medically mentals. Southern Medical Journal, 105(4), 238–241. https://doi. complex children with special health care needs. Archives of Pedi-org/10.1097/SMJ.0b013 e3182 4f32a c. atrics and Adolescent Medicine, 165(11), 1020–1026. https://doi. org/10.1001/archp ediat rics.2011.172. 1 3 http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Maternal and Child Health Journal Springer Journals

Care Coordination: Empowering Families, a Promising Practice to Facilitate Medical Home Use Among Children and Youth with Special Health Care Needs

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Springer Journals
Copyright
Copyright © 2018 by The Author(s)
Subject
Medicine & Public Health; Public Health; Sociology, general; Population Economics; Pediatrics; Gynecology; Maternal and Child Health
ISSN
1092-7875
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1573-6628
DOI
10.1007/s10995-018-2477-2
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Abstract

Introduction This paper describes the care coordination training program and results of an evaluation from its pilot in seven states. Despite the importance of practice-based care coordination, only 42.3% of children with special health care needs (CYSHCN) met all needed components of care coordination as defined by the Maternal Child Health Bureau. Recognizing that children with medically complex conditions often have lower rates of achieving care coordination within a medical home, the Region 4 Midwest Genetics Collaborative worked with families to develop a training to empower families in care coordination. The Care Coordination: Empowering Families(CCEF) training provides families with the knowledge, tools, and resources to engage with health, education and family support systems. This article gives an overview of the training and comprehensive evaluation. Methods Participants were family caregivers of children with genetic conditions and other special health care needs recruited in one of seven pilot states. Evaluation data were collected from 190 participants prior to and immediately following the training. An additional follow-up assessment one full year post training was completed by 80 participants (a response rate of 42%). Results Families who attended the training report being the primary source of care coordination for their children and 83.7% see their role in their child’s healthcare changing as a result of the training. The findings suggest that peer support and communication with providers increased as a result of the training over the course of the study. The data suggest that the training impacted how the family interacts with the child’s doctor, including initiating conversations to prepare their child for transition to adult health care. Further, families report system-level improvements 1 year later compared to the pre-training assessment. Discussion CCEF training is a promising practice for facilitating medi- cal home use among CYSHCN. Keywords Care coordination · Medical home · Training · Families · CYSHCN Significance home. This paper describes a training designed to empower parents as the main coordinator of their child’s care in the Effective care coordination has been associated with posi - event that the care providers do not or cannot offer coordina- tive outcomes for families and children, and it is generally tion support. The comprehensive evaluation of the training expected that healthcare professionals will provide care shows that parents can bring about positive change when coordination services as part of the family-centered medical they have the knowledge, skills, and resources for interacting with the healthcare system. * Lisa Gorman Ufer lgorman@mphi.org Introduction Michigan Public Health Institute, 2501 Jolly Rd. Suite 180, Okemos, MI 48864, USA Children or youth with special health care needs (CYSHCN) are described by the Maternal and Child Health Bureau Region 4 Midwest Genetics Collaborative, Okemos, MI, USA (MCHB) as “those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional Department of Psychology, Malone University, Canton, USA Vol:.(1234567890) 1 3 Maternal and Child Health Journal (2018) 22:648–659 649 condition and who also require health and related services of available in medical practices and gaps may exist among a type or amount beyond that required by children generally” medical offices and other services (e.g., education, hous- (McPerson et al. 1998). These families often manage multi- ing, transportation, respite) that children with complex ple systems of care (e.g., primary, specialists, therapies, edu- conditions may need. The AAP Council on Children with cation) without a central entry point (AAP 2005). A Medline Disabilities 2005 policy statement affirms that families of review of publications found that patients with five or more CYSHCN should have the opportunity to lead and/or be pro- chronic conditions may encounter up to 14 physicians in one active participants of their child’s care coordination team. calendar year (Vogeli et al. 2007). Given this complicated Traditionally, the onus has been on healthcare professionals landscape, effective care coordination across care providers to provide care coordination services as part of the medical is paramount for families of CYSHCN to maintain their chil- home (e.g., McAllister et al. 2007; Committee on Hospital dren’s optimal health by avoiding fragmented or duplicated Care and Institute for Patient-and-Family-Centered Care healthcare services. For families with children with com- 2012; Gupta et al. 2004; Moore and Tonniges 2004). While plex conditions (e.g., genetic conditions identified through many of these initiatives involve families in phases of plan- newborn screening), both the need for, and burden of, care ning and implementation, few focus on supporting parents as coordination is even greater (Cooley et al. 2013; Kuo et al. the main coordinator of their child’s care, a role that families 2011; Golden and Nageswaran 2012). often l fi l if care providers do not or cannot oe ff r coordination This paper describes a care coordination training that support (Gupta et al. 2004; Berry 2015). To fulfill this role, empowers families and results of an evaluation from its pilot families need adequate knowledge in their child’s condition, in seven states. Effective care coordination, which facilitates care coordination skills, knowledge of the medical home the linkage of children and their families with appropriate concept, and access to healthcare resources. The need for services and resources to achieve good health (COCWD additional knowledge and skills was identified as a priority 2014), has been associated with positive outcomes for fami- for families in the Region 4 Midwest Genetics Collabora- lies and children (Lawson et al. 2011; Farmer et al. 2011; tive (Region 4 Midwest) and led to the development of the Turchi et al. 2009; Miller et al. 2013). In a survey of 780 training, CCEF. patients, care coordination was endorsed as one of the most important elements of the family-centered medical home (Wexler et al. 2012). Theoretical Model Despite the broad consensus around the importance of practice-based care coordination, especially for CYSHCN, Bioecological theory (Bronfenbrenner 1977; Bronfenbren- many barriers keep practices from offering it (McAllister ner and Morris 2006) was the framework for CCEF cur- et al. 2007). In the U.S., only 42.3% of CYSHCN met all riculum development, operationalization and evaluation. components of care coordination as defined by the Maternal As depicted in Fig. 1, the children and youth with special Child Health Bureau (NS-CSHCN 2009/10). Children with health care needs (CYSHCN) are seen as part of a dynamic more medically complex conditions often have lower rates developmental system wherein relations among levels are of achieving care coordination within a medical home, as the seen as the basis of development. By taking a systems and ideal location of a medical home might shift over time (e.g., family-centered approach to the training, Region 4 Mid- between specialists and primary care; Raphael et al. 2013). west recognized the strength and capabilities of families, In the U.S., it is estimated that 43.0% of all CYSHCN have promoted greater parent/professional partnership with the a medical home, compared to only 34.6% of those children healthcare and service delivery systems, and empowered with complex needs (National Survey of Children with Spe- parents as a way to provide help and information in relation cial Health Care Needs 2009/10). A lack of effective care to the coordination of care for their children (Dunst et al. coordination may have a profound effect on higher needs 2007). Region 4 Midwest aimed to develop an intervention patients whose conditions may require long term follow-up that would empower families to engage with the healthcare care with specialists (Sahai et al. 2010). system which is achieved by increasing the parents’ knowl- edge about medical homes and care coordination through the Purpose training, and specifically by empowering them as experts of their children. As a result, Region 4 Midwest expected that This paper describes the Care Coordination: Empowering the CCEF training curriculum would change the way that Families (CCEF) training and results of an evaluation from families interact with the systems that promote better health. its pilot program in seven states. The program was devel- oped at the request of and with family stakeholders who reported being the only consistent managers of care for their CYSHCN. Effective care coordination is not universally 1 3 650 Maternal and Child Health Journal (2018) 22:648–659 Fig. 1 Illustration of CCEF and support in CYSHCN systems with the ecological model children who have been identified as having either a genetic Development of a Family‑Centered Care condition or special health care need. Participants were pro- Coordination Training vided a $150 gift card in recognition of their investment of time and to assist with transportation and childcare costs. The CCEF training curriculum, implementation plan, Take-home materials include a participant workbook with recruitment strategies, training evaluation, and sustain- additional resources, Partnering with your Doctor: The ability plan were developed in close collaboration with Medical Home Approach booklet and a personal journal. the Family Forum of Region 4 Midwest (a group of parents The CCEF training curriculum includes eight core train- of children with genetic conditions) and clinical partners ing components with 16 learning objectives, each aimed from seven states. The curriculum includes activities and toward accomplishing MCHB core outcomes. Figure  2 opportunities within the training day to develop skills illustrates the relationship of training objectives to intended and use tools aimed at increasing parenting self-efficacy outcomes and provides examples of training activities. The (Dunst and Trivette 2009) and equips families with the training highlights the significance of family-professional knowledge and belief that they can influence events that partnerships in both training content and by using a parent/ affect the health and development of their children. professional facilitation team (at least one facilitator must be a parent of a child with a genetic condition or other spe- Training Model cial health care need). The importance of peer support for parents of children is emphasized by developing a commu- The 8 h, interactive training can be provided to up to 25 nity of parents with common experiences and needs in the participants at one time. Participants should be parents of 1 3 Maternal and Child Health Journal (2018) 22:648–659 651 Fig. 2 CCEF objectives with examples of training activities as they relate to MCHB core outcomes training itself (Shilling et al. 2013 for review). In addition to training objectives were met, assess readiness for change, meeting parents who have a shared social identity, the train- and to improve the quality of the training. This survey was ing provides an opportunity to learn practical information distributed in paper format immediately after the training. and be inspired by others with similar experiences. Participation in the training and evaluation of the training was voluntary. Participants were encouraged to complete three surveys to help us improve our training and measure if Methods we accomplished our training goals. Parent coordinators partnered with families and organiza- Procedure tions such as Family to Family Health Information Center, Title V, Sickle Cell Disease Associations, Family Voices, Evaluation procedures were approved by the Michigan Pub- clinics, and hospitals to recruit participants. To be eligible lic Health Institute Institutional Review Board. Data were to participate in the training, individuals had to identify collected from training participants at three time points: themselves at registration as a parent or primary caregiver pre-assessment, post-training (immediately after training), of a child with a genetic condition. After the initial training and 1 year follow-up. Participants were asked to create a funded by the genetics collaborative, partners expanded the personal identification code using a series of three ques- inclusion criteria to include parents and caregivers of all tions to link surveys across time without accessing identifi- CYSHCN. able information. The pre-assessment and 1 year follow-up surveys mirror each other to evaluate long-term training Participants impact. Participants completed both of these surveys online (paper copies were mailed upon request). Study data were A total of 190 caregivers participated in one of ten CCEF collected and managed using Research Electronic Data Cap- trainings in 2013. All training participants completed the ture (REDCap), a secure, web-based application designed to pre and post-training assessments, and 80 participants (42% support data capture for research studies (Harris et al. 2009). response rate) completed the 1 year follow-up assessment. The intent of the post-training survey was to determine if Respondents to the follow-up survey did not differ across 1 3 652 Maternal and Child Health Journal (2018) 22:648–659 Table 1 Participant Variable Pre-assessment 1 Year demographic characteristics N = 190 follow-up at pre-assessment and 1 year N = 80 follow-up Child’s age in years  Mean (SD) 8.9 (5.7) 9.6 (5.3)  Range 0–27.0 1.0–28.0 Average age of diagnosis in years  Mean (SD) 1.8 (2.5) 1.9 (2.6)  Range 0–12.0 0–12.0 Number of health conditions (check all that apply)  Mean (SD) 2.4 (1.9) 2.3 (1.8)  Range 0–9 0–8 Number of developmental conditions (check all that apply)  Mean (SD) 1.4(1.8) 1.3 (1.7)  Range 0–7 0–7 Race and ethnicity (check all that apply)  White 76.5% 77.1%  Black 20.5% 20.0%  Asian 1.8% 2.9%  American Indian or Alaskan 0.6% 1.4%  Arabic 0.6% 0%  Other 1.0% 0%  Hispanic 6.0% 7.0% Income  < $20,000 26.6% 22.5%  $20,000–$30,000 11.7% 8.8%  $30,001–$40,000 14.4% 15.0%  $40,001–$50,000 10.6% 8.8%  > $50,000 36.7% 45.0% Insurance (check all that apply)  Medicaid 65.8% 61.3%  Employer/union 47.9% 53.8%  S-CHIP (state) 10.0% 18.8%  Military 0.5% 0%  Uninsured 1.6% 1.3%  Other 6.8% 10.0% Number of children in home  Mean (SD) 2.4 (1.4) 2.5 (1.4)  Range 0–10 1–6 Six participants reported 0 children living in the home. These participants were other caregivers, step- parents, or parents of an older child who was currently living outside of the home many demographic variables compared to training partici- recruitment efforts to improve access to genetic services for pants who did not respond (see Table 1). Further, respond- underserved populations, nearly one in four training par- ents and non-respondents to the follow-up had similar rates ticipants identified with a minority race or ethnic group. of achieving the MCHB core outcomes at pre-assessment. Indeed, White participants are slightly under-represented The participants’ children with special health care needs (76.5% CCEF compared to 82.4% seven-state population) represented a wide range of genetic and other medical con- and Black participants over-represented (20.5% CCEF com- ditions and developmental delays. Distribution of racial pared to 9.9% seven-state population) in the CCEF partici- groups is comparable to the population in the seven-state pant sample. Participants represented a broad spectrum of region based on U.S. Census Bureau (2010). As a result of income levels. 1 3 Maternal and Child Health Journal (2018) 22:648–659 653 Table 2 Measures and data collection schedule for CCEF evaluation Measure Number of Type Pre-assessment Post-training 1 Year items follow- up Demographics and child’s health condition(s) 8 Multiple choice ✓ ✓ Training quality  Satisfaction 4 4-point Likert scale ✓  Content knowledge 10 Multiple choice ✓  Suggestions to improve training tools 1 Open ended ✓ ✓  Training objectives met 16 5-point Likert scale ✓ Training impact  Readiness for change 2 4-point Likert scale ✓  Plans to use training information 1 Open ended ✓  Care coordination skill level 6 4-point Likert scale ✓ ✓  Use of training tools 5 Multiple choice ✓  Change attributed to training 6 4-point Likert scale ✓ System-level change  Question from National Survey of Children with 44 Likert scale ✓ ✓ Special Health Care Needs Multiple choice Participants’ perception as to whether training objectives Assessment and Measures were met were assessed using 16 items. The assessment used a 5-point Likert scale ranging from “Strongly Disagree” to The evaluation tools assessed the training from several per- “Strongly Agree.” Items include topics covered in the cur- spectives. Table 2 provides an overview of measures and riculum (e.g., “After today’s training I can identify the com- the data collection schedule. First, a post-training assess- ponents of a Medical Home”; “After today’s training I have ment was used to understand training quality and provide increased knowledge of the Patient Protection and Afford- opportunity for quality improvement efforts in the pilot. The able Care Act (ACA) as it applies to CYSHCN”; and “After post-training assessment included measures of training satis- today’s training I understand the need to plan for child’s faction, content knowledge, and training objectives. Second, transition to adulthood”). training impact was assessed on three levels: readiness for change, care coordination skill level, and changes in care Training Impact coordination attributed to training. Finally, systems-level change was assessed to understand if increasing caregiver Readiness for change using two Likert-type items and an competence might impact the care they receive. Participants open ended question was assessed following the training. also responded to a series of questions on general demo- The 4-point Likert scale ranges from “Definitely” to “Not at graphics, type of insurance, and child’s health conditions. all” on “Do you see the role you play in child’s healthcare changing as a result of this training?” and “How likely are Post‑training Quality Improvement you to include new individuals on your child’s care team?” Participants also provided written responses to how they At the post-training assessment, participants responded to might use the information from this training to improve care questions about the degree to which they were satisfied with coordination for their child in the future. the training as a whole and with the facilitators (responses Care coordination skill level was assessed at two times on a four-point Likert scale from “Very Satisfied” to “Very to compare their perception prior to training and the 1 year Dissatisfied”). Participants provided written response to an follow-up. The participants report skill level on their com- open-ended question about what suggestions they had to munication with doctor on 4 point Likert-type scale with improve the training. To assess whether the training was responses ranging from “Very comfortable” to “Uncom- sufficiently teaching intended content, participants were fortable.” Participant responded to questions as it relates to asked to respond to ten multiple choice items around con- their comfort with “Asking questions during a medical or tent addressed in the training. Items ask about a range of healthcare appointment,” “Determining the best commu- topics covered including definitions of a Medical Home, nication method to use with your child’s doctor or health- importance of transition to adult care, communicating with care provider,” “Contacting your child’s doctor or other healthcare professionals, and navigating health insurance. 1 3 654 Maternal and Child Health Journal (2018) 22:648–659 healthcare provider to get advice in between face-to-face “agreed” or “strongly agreed” that they had opportunities appointments,” and “Reflecting on the appointment after it to contribute to the conversation during the training. When occurs to determine if you got the answers you needed.” asked what could be improved about the CCEF training, the Responses to ability to organize information (1 item) and majority of participants explicitly said they would change peer support (1 item) were also a 4 point Likert-type scale nothing. with responses ranging from “Very well” to “Not at all” in response to “How well do you feel you organize informa- Content Knowledge tion?” and “Describe how well the peer support you cur- rently have in-place meet your needs.” On average, participants answered 89.0% of items correctly A final measure of change attributed to the CCEF train- on the 10 quiz-style items to assess understanding of core ing participation was 6-items collected in the 1 year follow- training content following the training (M = 88.9; SD = 13.4). up survey. This Likert-type scale has four possible responses A general linear model was used to understand if quiz scores including “No, I didn’t change anything,” “I made a few varied by race, ethnicity, or income. Participants scores changes,” “I made many changes,” and “Doesn’t apply; I significantly varied by income levels (F(4,145) = 2.48, didn’t need to make changes.” Participants responded to p = .046). Post-hoc comparisons of the income groups using behavior changes they perceived as a result of the training. a Bonferroni correction showed that participants in the low- Questions include: “Did you make any changes to how you est income category (< $20,000: M = 83.27, SD = 16.5) communicate with your child’s doctor(s) as a result of the scored significantly lower than participants in the high- training?” “Did the training prompt you to start a conver- est two income brackets ($40,001–$50,000: M = 92.82, sation with your child’s doctor(s) about transition to adult SD = 8.98, p = .038; > $50,000: M = 92.08, SD = 11.79, care?” “Did you change how you manage your child’s health p = .006). Hispanic participants scored significantly lower insurance as a result of the training?” “Did you make any than other participants (Hispanic: M = 81.78, SD = 16.23; changes to how you organize your child’s health information Others: M = 88.77, SD = 13.80; F(1,164) = 4.41, p = .037). as a result of the training?” “Did you make any changes to No significant differences among additional racial groups your peer supports as a result of the training?” and “Did you and no significant interactions were found in the sample. change how you take care of yourself as a result of the train- ing?” The evaluation used two additional items that assessed CCEF Objectives Met participant’s use of 11 care coordination tools in the past year that were a part of the training curriculum. Participants strongly endorsed that the 16 training objec- tives were met (80.9–100% on individual objectives). The System‑Level Services only two objectives receiving an endorsement under 90% were associated with insurance (increased knowledge of the Question from the National Survey of Children with Spe- ACA as it applies to CYSHCN, and techniques for dealing cial Health Care Needs (NS-CSHCN) was used to assess with denied insurance claims). The mean of all objectives the child’s access to health care services including medical was 4.57 (SD = 0.38) on a five point scale with higher val- home, adequate health insurance, care coordination, access ues indicating stronger agreement that objectives were met. to needed services, transition planning and shared deci- Responses to objectives were compared across race, ethnic- sion making. The NS-CSHCN questions were administered ity, and income categories using a general linear model to during the pre-assessment and the 1-year follow-up to the understand if participants from different backgrounds had training. All MCHB outcomes were constructed using the different perspectives on the efficacy of the training. There Child and Adolescent Health Measurement Initiative’s SPSS were no significant differences among these groups. codebook (CAHMI 2012). Training Impact Results Readiness for Change on Post‑training Assessment Training Quality The majority of participants (88.9%) respond they were either “definitely” or “somewhat” likely to include new Satisfaction individuals on their child’s care team and 83.7% reported they either “definitely” or “somewhat” saw their role in Participants report a high level of satisfaction with the train- their child’s healthcare changing as a result of the training. ing with 99% reporting “satisfied” or “very satisfied” with These items were not significantly correlated with the num- the training and the trainers. In addition, 99% of participants ber of people currently helping them with care coordination. 1 3 Maternal and Child Health Journal (2018) 22:648–659 655 African American participants were more likely to endorse Table 4 Participants’ attributed behavior change to CCEF training at 1 year follow-up (N = 80) the most positive response option by reporting they “defi- nitely” saw their role in their child’s healthcare changing Care coordination skill Made changes due to training as a result of the training (76.5% compared to 51.5% of (%) other participants, χ (3,166) = 8.54, p = .036). There were no other significant differences in responses to these items Organization of child’s health information 83.8 by race, ethnicity, or income. When asked how they will use Peer support 60.1 information from the training to improve care coordination, Communication with care providers 72.5 qualitative analysis of participants’ responses reflected the Navigating insurance 46.3 following themes: organization of child’s health informa- Self-care 65.1 tion (35.3%), insurance (18.8%), medical home (18.8%), Transition 71.0 resources (18.8%), advocacy (17.6%), communication (12.9%), and transition (10.6%). the training, with 25% of participants reporting they had Care Coordination Skills remained in contact with someone from the training. When asked explicitly about transition planning, 71% of families Participants’ responses to items about care coordination- with children 12 years or older said the training prompted related skills (organization of child’s health information, them to have a conversation with their healthcare provider peer supports, and communication with care providers) about transition in the past year. There were no significant before and 1 year after the training are reported in Table 3. differences among race, ethnic, or income groups. Participants’ reports of peer support and communication with care providers increased at statistically significant lev - Systems‑Level els from the pre-training to 1 year follow-up assessments. Family income, race, ethnicity, number of health conditions, The pre-assessment and 1  year follow-up surveys meas- and number of people helping with care coordination were ured five of the six MCHB core outcomes to test whether not significantly associated with the skills at follow-up. the CCEF training would empower families to bring about change in their child’s healthcare system. At pre-assessment, Change Attributed to CCEF there were few significant associations between demo- graphic factors (race, income, family size, age of child with Participants reported that the training inspired them to genetic condition, and number of child’s health conditions) make changes to their care coordination-related skills and and the likelihood that a participant would meet the MCHB activities (organization, peer support, communication with outcome. Participants who did not meet MCHB outcome #5 care providers, navigating insurance, and self-care), even (access to community-based services) were more likely to if they already rated themselves as highly skilled in these 2 be White (χ (1,110) = 7.51, p = .006). areas (see Table 4). Participants reported using an average We wanted to understand how the CCEF participants of three resources from the training (M = 3.05, SD = 1.98) compared to the national sample from the NS-CSHCN. in the past year. Local tips and resources that were collected It became clear that the percentage of CCEF participants from participants during the training and the Region 4 Mid- achieving the MCHB outcomes at pre-assessment was west’s publication, Partnering with Your Doctor: The Medi- significantly lower than the national sample. Given the cal Home Approach Guide were the most frequently refer- medical complexity of the children in the CCEF sample, enced resources. Peer networks were also sustained after we looked at national survey sub-groups that might be a Table 3 Participants’ perception a Care coordination skill Care Coordination: Empowering Families (CCEF) follow- of care coordination skills up respondents (N = 80) Prior to CCEF 1 Year follow-up F p M(SD) M(SD) Peer support 2.69 (0.80) 3.05 (0.74) 13.29 < .001 Communication with care providers 3.37 (0.54) 3.57 (0.56) 7.39 .008 Organization of child’s health information 3.01 (0.70) 3.14 (0.67) 2.55 .11 Four point Likert scale with 4 being more positive and 1 being least positive 1 3 656 Maternal and Child Health Journal (2018) 22:648–659 Fig. 3 MCHB Core outcomes: 44.2% 60.3% CCEF Participants comparing care coordination Families as Partners participants with National NSCSHCN: Children with Survey of Children with Special 37.4% 51.4% complex conditions Healthcare Needs respondents Adequate Insurance qualified on 4 or 5 screener criteria 32.5% 41.1% Access to services 10.0% 25.7% Medical Home 0.0% 0.0% 0.0% 22.1% Transition 0.0% 10.0% 20.0% 30.0% 40.0% 50.0%60.0% 70.0% better comparison. The closest sub-group we could find that Participants’ reports of the help they receive with care mirrored “medical complexity” was the breakdown of the coordination did not significantly change a year after the national sample based on the number of screener items they training. The majority of participants (73.2%) reported that qualified for (1, 2, 3, and 4 or 5). When compared with the no one else helps them coordinate care for their child. Prior most medically complex group (those who qualified for 4 to the training, 6.3% of participants report one care coordina- or 5 screener criteria), the CCEF sample still had signifi- tor, and 20.5% report having two or more care coordinators cantly lower rates of meeting every MCHB core outcome for their child. One year later, this picture had not changed (Families as Partners: t(3601) = 6.03, p < .001; Medical significantly—69.5% reported that no one else helps them Home: t(1613) = 10.18, p < .001; Adequate Insurance: coordinate care, 2.4% have one care coordinator, and 26.8% t(3002) = 4.84, p < .001; Access to Services: t(2431) = 6.93, had two or more care coordinators for their child. Reports p < .001; Transition: t(519) = 20.24, p < .001; see Fig. 3). of help with care coordination did not significantly vary by We used repeated measures general linear models to race, ethnicity, income, or number of child’s health condi- compare the percentage of participants who met the MCHB tions. Family caregivers who do have help listed between 1 outcomes before and 1 year after the training (see Table 5). and 12 individuals as people who actively help coordinate Outcome #3 (adequate insurance) reached statistical signifi- care. These individuals were most likely to be a family mem- cance. The likelihood of meeting outcome #3 1 year after ber or someone in a doctor’s office. Participants still aver - the training was not associated with insurance type (private, aged around one person at follow-up (M = 0.94, SD = 1.79) public, or both) or reports of changes to insurance over the compared to pre-assessment (M = 0.81, SD = 1.66). past year (including changes due to the ACA). Outcome #1 (families are partners in decision making) was a statistical trend. Table 5 Participants’ rates of meeting MCHB core outcomes at pre-assessment and 1 year follow-up MCHB core outcome CCEF follow-up respondents (N = 80) Pre-assessment 1 Year follow-up F p Families of CSHCN are partners in decision-making for child’s optimal health 43.8% 57.1% 3.64 .06 CSHCN receive coordinated, ongoing, comprehensive care within a medical home 6.3% 11.4% 1.34 .25 CSHCN have adequate private and public insurance to pay for the services they need 30.0% 53.8% 15.93 < .001 Community-based service systems are organized so CSHCN can use them easily 31.4% 41.7% 0.28 .60 Youth with special health care needs receive services necessary to make a successful 0% 8.7% 2.13 .16 transition to adult life (age 12 and older ) There are 23 children aged 12 and older at pre-assessment and 28 at 1 year follow-up 1 3 Maternal and Child Health Journal (2018) 22:648–659 657 parent-to-parent programs, the experiential learning helps Discussion connect families with each other (Hartman et al. 1992) and support each other through reciprocity of emotional and Training Efficacy informational support (Santelli et al. 1997). These impor- tant connections help families who are raising children with The CCEF training curriculum is unique in that it targets complex health needs feel part of a broader community. families as the agents of change within the larger ecologi- The local connections made at the training provide another cal context of their child’s healthcare. When families are important point of contact for families. Indeed, 1 year later, educated about the systems they need to navigate and their 25% of participants reported being in contact with other role and power within them, they can bring about positive families they met at the training. These connections may change in how they interact with the systems that support be especially important for families who have children with their children. Participants’ reports of increased peer support undiagnosed or rare conditions (around 23% of all training and better communication with healthcare providers in the participants), who may not have a condition-specific support year since the training are examples of parents as agents of network to participate in. change. Qualitative responses from participants suggest that The comprehensive evaluation demonstrates that four education around key systems (such as insurance) and con- out of five participants met all training objectives. Partici- cepts (such as medical home), made them reconsider their pants have shown an increase in key knowledge and skills roles as caregivers and resulted in their becoming more pro- areas such as care coordination, medical home, transition, active in the coordination of their children’s care. A powerful advocacy, importance of self-care, evaluating resources, and example of parents being proactive is seen in findings around navigating health insurance. Besides significant differences planning for transition to adult care. While the overall rate in insurance from the pre-assessment to 1 year follow-up, a of families who met the MCHB transition outcome (based notable trend is impact on parents as partners in decision- on reports of physicians’ behavior) remained low, 71% of making for the children’s health. A significant difference in families with children 12 years or older (n = 28) reported communication with care providers from the pre-assessment initiating conversation about transition after training. and 1 year follow-up further supports the trend of parents In an effort to improve access to care for underserved as partners in decision-making. Based on participant self- populations, the Region 4 Midwest staff incorporated prin- reports of positive effects of the training at 1-year follow ciples of health equity during training development, recruit- up, it is likely that improved confidence and proficiency in ment, and implementation. Evaluation results demonstrated interacting with systems that support their children persist few significant differences across race, ethnic, and income over time. groups. Where differences were found, they did not point to a consistent bias, suggesting that training efficacy was Lessons Learned found across a broad range of participants. Of most con- cern is the finding that participants from the lowest income Some evaluation results illustrated areas where the cur- level and Hispanic participants scored significantly lower on riculum and additional support for participants may be the post-training quiz items assessing training content. To warranted. For example, feedback from the training objec- improve the quality of the training for Hispanic participants, tives indicates need to expand the ACA/insurance content. some modifications have been made to the curriculum and A supplemental training or linking participants to a patient evaluation material, including translating the curriculum and navigator for individualized assessment of insurance cover- evaluation material for Spanish speaking participants. The age, needs and denied claims might improve access issues. Spanish version of the curriculum has not been pilot tested. Participants’ reporting the intention of adding new partners Further, it should be noted that our target was a seventh to help with care coordination immediately after the training grade reading level. Although reading level is sometimes did not align with reports of actual care coordination support confounded by inclusion of health condition names. Further 1 year later. study is needed to determine if some participants had trouble Use of MCHB core outcomes as measured by NS CSHCN understanding the questions, or if this pattern of findings provides an excellent comparison to understand training par- indicates that some participants need additional outreach ticipants and growth over time. However, these items assess and support in order to effectively apply the CCEF training participants’ experiences with their healthcare providers, not curriculum to their lives. necessarily their own experiences coordinating care for their One of the important ways families are empowered children. Region 4 Midwest searched for other established through the training is by networking with peers. The measures that would assess the caregivers’ experience more training format requires participants to interact with peers closely. Ultimately, the evaluation team had to consider the throughout a full day of facilitated activities. Like other importance of using normed and validated measures while 1 3 658 Maternal and Child Health Journal (2018) 22:648–659 keeping the burden on participants reasonable. Increases similar benefit across race and ethnicity. By empowering in meeting the core outcomes may reflect an awareness of caregivers with knowledge and skills related to care coor- expectations for their provider due to the training. Several dination, these caregivers are more able to affect positive participants mentioned such a change after learning about change within their child’s healthcare systems. By partner- the medical home concept. We should also note that the ing with HRSA funded programs and family and disease evaluation tool has gone through several iterations since the specific organizations in the recruitment of training par - pilot with even greater input from family participants about ticipants, the training curriculum shows promise for use by the evaluation design. these initiatives and others in addition to genetic services and the regional genetic networks. With a pilot expansion Limitations effort already underway, CCEF may become an evidenced- based training that certified facilitators from other HRSA Self-report data are always liable to response biases. How- grantees can use to improve core outcomes for clients they ever, the present evaluation shows no more concern than serve. other similar designs. There is no indication that these data Acknowledgements We would like to acknowledge the following were of more concern with the present evaluation than with members of the Region 4 Midwest Genetics Family Forum who con- other similar designs. Attrition in long-term follow-up is tributed to the curriculum development and implementation: Talana a common problem in longitudinal studies. The 1  year Hughes, Zina Berryhill (Illinois); Angela Paxton, Mary Jo Paladino, Beth DeHoff (Indiana);Debbie Gilbert; Sondra Gilbert, Cristina Kur - follow-up assessment had a 42% response rate. Additional vers (Kentucky); Amy Clugston, Debbi Henry, Sandy Laprad, Scott analysis suggest that there were no significant differences Newport (Michigan);Jennifer Arveson, Pat Lang (Minnesota); David in demographics or satisfaction with the training for those Entwistle, David Hoffman, Allison Kingsley (Ohio); Kara VanVooren participants that did and did not complete the 1 year post (Wisconsin); and Kristen Hawkins (Parent Coordinator). Other contrib- utors include Lisa Huckleberry and Traci Reihl. This project was sup- training assessment. While the response rate is respectable ported by the Health Resources and Services Administration (HRSA) for an evaluation eo ff rt one full year after participation in the of the U.S. Department of Health and Human Services (HHS) under training, there may be opportunity to improve the response grant number H46MC24092, Genetic Services Project awarded to the rate by maintaining contact with participants throughout the Michigan Public Health Institute. This information or content and con- clusions are those of the author and should not be construed as the year, requesting updated contact information, and provid- official position or policy of, nor should any endorsements be inferred ing incentives to complete the follow-up survey. The CCEF by HRSA, HHS or the U.S. Government. pilot was limited to participants from seven states within the Midwest region. Compliance with Ethical Standards The small sample size and geographic location of the pilot limit the generalizability of the findings. Further evaluation Conflict of interest The authors have no conflicts of interests or corpo- efforts should include larger samples from other regions to rate sponsors to disclose. see if training outcomes can be replicated in other regions Open Access This article is distributed under the terms of the Crea- of the country and with other facilitators. Another limitation tive Commons Attribution 4.0 International License (http://creat iveco is the lack a control group in the evaluation design. This mmons.or g/licenses/b y/4.0/), which permits unrestricted use, distribu- project could benefit from funds to conduct a randomized tion, and reproduction in any medium, provided you give appropriate control trial to determine whether care coordination skills for credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. participants completing the training are significantly differ - ent than similar parents who do not have access to CCEF. A randomized control trial with a larger sample size will be an important next step in moving this promising practice toward References an evidenced-based intervention. American Academy of Pediatrics. (2005). Care coordination in the medical home: Integrating health and related systems of care for children with special health care needs. Pediatrics, 116(5), Conclusions for Practice 1238–1244. Berry, J. G. (2015). 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