Running Head: PARENT-DIRECTED CONSULTATION EVALUATION 1

Running head: PARENT-DIRECTED CONSULTATION EVALUATION 1

Evaluation of Parent-Directed Consultations in the Utah Regional Leadership Education in

Neurodevelopmental Disabilities Program

Marla Ambrose

University of Idaho

Allison Ellzey

University of Utah

Bethany Rigles

University of Montana

Daniel Roberts and Vanesa Webb

Utah State University

Lisa Wilson

Parents, Let’s Unite For Kids, Billings, MT

Faculty Mentors: Gina Cook and Barbara Fiechtl Running head: PARENT-DIRECTED CONSULTATION EVALUATION 2 Parent-Directed Consultation Evaluation

Introduction

Studies have demonstrated that provision of family-centered care is associated with improved health care outcomes for children with special health care needs (Kuhlthau et al.,

2011). Family-centered care has been associated with fewer delays to care, lower out-of-pocket costs for families, and fewer emergency room department visits (Kuo, Bird, & Tilford, 2011).

The American Academy of Pediatrics has strongly recommended a patient and family-centered approach to care, citing that it improves patient outcomes, is cost-effective, increases staff satisfaction, and may improve clinical decision making and decrease legal claims (Committee on hospital care & Institute for patient- and family-centered care, 2012). Many other expert panels also recommend patient and family-centered care, including those representing The American

Speech-Language-Hearing Association (Woods, Wilcox, Friedman, & Murch, 2011) and the

American College of Critical Care Medicine (Davidson, et al., 2007). Families also value family- centered practices as important in the care of their children (Crais, Roy, & Free, 2006). Patients and families experience higher satisfaction in their care if it is family-centered (Law, et al.,

2003), specifically if they feel they are partners in that care (King, Teplicky, King, &

Rosenbaum, 2004). Family-centered practices have been shown to reduce racial disparities in care (Ngui & Flores, 2006), though children of racial or ethnic minority groups and children from families where English is not the primary language are less likely to receive family- centered care (Coker, Rodriguez, & Flores, 2010).

Current instruction in family-centered care is not universal in professional training programs, despite evidence and support for its effectiveness. Medical residents report that instruction in family-centered care is specialty-specific (strongest in primary care fields), given a Running head: PARENT-DIRECTED CONSULTATION EVALUATION 3 lower priority than evidence-based care and electronic medical record proficiency, and is often not reinforced during patient encounters (Philibert, Patow, & Cushon, 2011).

The Utah Regional Leadership Education in Neurodevelopmental Disabilities program

(URLEND) is one of several government-funded LEND training programs in the United States.

It is designed to develop professionals who are well-equipped to serve the needs of children with special health care needs and their families. One of the primary program goals of URLEND is providing continuing education and training in “the provision of family-centered, culturally competent, community-based integrated systems of care” (URLEND, 2012).

To that end, a cornerstone of URLEND is the parent-directed consultation (PDC). Parents and other caregivers of children with special health care needs are recruited by program faculty and trainees to participate in the PDCs. As suggested by the “parent-directed” descriptor, all of the primary questions discussed during the consultation are provided by the family. The family then has the opportunity to discuss their primary concerns with an interdisciplinary group of

URLEND trainees and faculty members. Trainees and faculty members are professionals or graduate students in a variety of disciplines, including pediatricians, speech-language pathologists, audiologists, social workers, psychologists, dietitians, pediatric dentists, special education and early childhood teachers, physical therapists, occupational therapists, health administrators, genetic counselors, sociologists, and health educators. Family members of persons with disabilities and adults with disabilities also serve as both faculty members and as trainees. Although they are not official participants in the PDC session, they often observe the sessions and provide recommendations.

Since the advent of the PDCs in 2005, surveys surrounding family and trainee satisfaction with the experience and suggestions for its improvement have been conducted by URLEND Running head: PARENT-DIRECTED CONSULTATION EVALUATION 4 faculty. However, the characteristics of the families participating in the program have not been studied, nor have quality or outcome measures been formally assessed. The aim of this study is three-fold. Our first objective is to learn more about the families who participate in the URLEND

PDCs with respect to demographics, special needs of children in the family, and services the family has received. Secondly, we aim to assess family coping skills prior to and one month following their participation in the PDC. Thirdly, we intend to assess family perceptions of the extent of family-centered care received from community provider(s) before and after participation in the PDC. This study is ongoing and is in its initial year of data collection.

Therefore, sample sizes and data analyses are preliminary.

Methods

Participants

Nine parents or caregivers, representing 11 children with special health care needs participated in this project. Families were recruited by URLEND trainees, and typically had a professional relationship with that trainee prior to the PDC. Participating families were given a unique identifier to ensure confidentiality. The code for these identifiers was kept in a locked filing cabinet at the University of Montana. No family names or other identifying information were included with the data or in the reported findings.

Procedures

Measures

Three online surveys were created for this project using Survey Monkey software. Our parent consultant assisted in the development of the survey instruments and assessed them for readability. In addition, one parent of a child with special health care needs and a psychologist at the Northwest Neurobehavioral Clinic in Boise, Idaho reviewed the surveys to determine ease of Running head: PARENT-DIRECTED CONSULTATION EVALUATION 5 comprehension, language level, and the amount of time needed to complete them. A Flesch-

Kincaid readability test scored the surveys at a ninth grade reading level.

Parents were emailed a letter and link to each survey by their PDC facilitator. All parents were offered materials in Spanish, in pen and paper format, and/or accessible formats. All participating parents completed the surveys online, however, and did not express need for alternate formats.

Each survey included a mixture of open-ended, likert scale, and multiple choice questions. A link to the first survey (or Pre-PDC survey) was emailed to the parent or caregiver along with a letter describing the study approximately three days prior to their scheduled PDC.

Parents were asked to complete the survey before attending their PDC. The Pre-PDC survey included questions regarding caregiver and child demographics, services received, family- centered care, family coping skills, and why the family chose to participate in a PDC.

Family-centered care questions were informed by the Family-Centered Care Self-

Assessment Tool (Family Voices, 2008) and by the components of family-centered care outlined by the Maternal and Child Health Bureau. Questions included how often the parent felt he/she was an active participant in developing treatment or care plans for their child, and how often their provider honored their family’s cultural and spiritual beliefs, considered the family’s economic situation, and connected them with other families with similar life situations (please see Appendix A).

A link to the second survey (or Immediate Follow-Up Survey) was emailed to the parent or caregiver immediately following their PDC. Parents were asked to complete the Immediate

Follow-Up survey within one week of their PDC. The Immediate Follow-Up survey included questions about the family’s experience participating in the PDC. Questions included whether or Running head: PARENT-DIRECTED CONSULTATION EVALUATION 6 not the PDC team listened to and addressed parent concerns, respected family cultural and spiritual beliefs, and treated parent(s) as active members of the PDC team. Suggestions for improving the PDCs were also solicited through open-ended questions (please see Appendix B).

Finally, a link to the third survey (or Post-PDC Survey) was emailed to the parent or caregiver one month following their PDC. This survey paralleled the Pre-PDC survey, with two exceptions. First, demographic questions were removed and follow-up questions regarding the family’s experience participating in the PDC were included. Additional questions included how satisfied the parent was with their PDC experience, whether or not the parent had implemented any of the recommendations made during the PDC, and if the parent had any suggestions for improving the PDC experience (please see Appendix C). If parents had not completed the

Immediate Follow-Up or Post-PDC surveys within a week of receiving them, a reminder email was sent.

Parent respondents were notified in writing prior to completing each survey that their participation in the project was completely voluntary and that they could chose to answer or not answer any question. They were also informed that all information provided on the surveys would be kept confidential. The Utah State University Institutional Review Board reviewed and approved study procedures and survey instruments prior to participant involvement.

Data Analysis

Descriptive statistics were generated for the types of services received by the child(ren) with special health care needs, the level of family-centered care, and family coping skills at both the baseline and one-month time points using SPSS software. Family-centered care and family coping skill responses were analyzed by individual question and a composite score. Running head: PARENT-DIRECTED CONSULTATION EVALUATION 7 Family-centered care (FCC) composite scores were created by assigning a point value to each of the eight FCC questions. Point values were as follows: “rarely” = 0; “sometimes” = 1;

“half of the time” = 2; “most of the time” = 3; and “always” = 4, for a possible total of 32 points.

Higher composite scores indicated a higher level of family-centered care.

Family-coping skills (FCS) composite scores were created by assigning a point value to each of nine FCS questions. Two point scales were used, depending on the question type (e.g., confidence or support). Point values for the confidence scale were as follows: “not confident” =

0; “somewhat confident” = 1; “very confident” = 2. Point values for the support scale were: “no support” = 0; “limited support” = 1; “moderate support” = 2; “above average support” = 3; and

“complete support” = 4. With a total of six confidence questions and three support questions, the maximum score was 24 points. Again, higher FCS composite scores indicated a higher level of family coping skills.

Finally, family feedback from the PDC was analyzed by question using the Immediate

Follow-Up survey. Suggestions for improvement were analyzed qualitatively using both the

Immediate Follow-Up and One-Month Follow-Up survey data.

Results

Nine families participated in PDCs that occurred between October 2012 and March 2013.

All nine caregivers completed the pre-PDC, immediate follow-up, and one month follow-up surveys.

Caregivers were primarily mothers (n=8); one father participated in the program.

Caregivers ranged in age from 22 to 45 years with an average age of 35.67 years. Eight of the caregivers were married, and one caregiver was divorced. Six caregivers identified English as their primary language, and two caregivers identified Spanish as their primary language; one Running head: PARENT-DIRECTED CONSULTATION EVALUATION 8 caregiver did not identify a primary language. Seven caregivers identified as White/Caucasian and two caregivers identified as Hispanic/Latino. The following religious and spiritual orientations were reported: Christian (n=2), Catholic (n=2), Latter Day Saint (n=4), spiritual but not religious (n=1). Caregivers lived in Idaho (n=1), Montana (n=3), North Dakota (n=1) and

Utah (n=4).

The children with special health care needs in these families ranged in age from two years to ten years, with an average age of 5.11 years. Seven children were identified by their families as white/Caucasian and two children were identified as Hispanic/Latino. The following disabilities and chronic conditions were reported by the caregivers: 9q34 duplication, autism, pervasive developmental disorder-not otherwise specified, attention deficit and hyperactivity disorder, trisomy 21/Down syndrome, Chiari malformation, optic nerve drusen, auditory processing disorder, hearing loss, “cognitive memory disorder,” speech/language disorder, mosaic triploidy syndrome, scoliosis, and seizure disorder. The children had received a variety of services prior to their PDC, including physical therapy (PT), occupational therapy (OT), speech therapy (SLP), audiology services, nutrition services, special education, genetics consultation, psychology or psychiatry, early intervention, and social work services (see Table

1). Running head: PARENT-DIRECTED CONSULTATION EVALUATION 9 Table 1

Services Received by CSHCN of families participating in PDCs

Service Number of children Number of children with history of service receiving service at time pre-PDC of pre-PDC survey

PT 7 2 OT 6 5 SLP 8 7 Audiology 5 4 Nutrition 2 0 Special 7 7 Education Genetics 4 2 Psychology or 4 2 Psychiatry Early 8 4 Intervention Social Work 1 1

Responses to the family-centered care (FCC) and family coping skills (FCS) questions for the pre-PDC and one month follow-up surveys are listed in Tables 2-7. For the pre-PDC survey, seven caregivers (77.8%) answered question 17, which addresses provider respect for family cultural and spiritual beliefs. All nine caregivers answered the other questions in the pre-

PDC survey. Additionally, all the caregivers responded to the one month follow-up, answering every question.

Using a rating scale where “1 = rarely,” “2 = sometimes,” “3 = half the time,” “4 = most of the time,” and “5 = always,” the average caregiver reported receiving most aspects of family- centered care (FCC) either “sometimes” or “most of the time” prior to their PDC. Caregivers reported the highest FCC ratings in relation to feeling like they were an active participant in developing the treatment and care plan for their child with special health care needs (mean = Running head: PARENT-DIRECTED CONSULTATION EVALUATION 10 4.44), and in feeling that their provider honored their family’s spiritual and cultural beliefs (mean

= 4.43). Caregivers reported the lowest FCC ratings in relation to how often their provider connected them to other families with similar life situations (mean = 1.67), and how often they had the ability to provide feedback to their provider about the services received (mean = 2.89).

Table 2 presents FCC results by question.

Table 2

Pre-PDC Family-Centered Care Survey Responses

M M M e S Question N in ax a D n 16. How often are you an active participant in 4 1 developing the treatment or care plan for your . . 2 5 child with special health care needs? 4 0 4 1 17. How often does your provider honor your 4 . cultural and spiritual beliefs when developing . 3 5 7 treatment or care plans for your CSHCN? 4 9 3 18. How often does your provider consider your 3 1 family’s insurance status and economic situation . . 1 5 when making treatment plans for your CSHCN? 5 2 6 4 19. How often is length of appointment with 3 provider adequate? . 2 5 1 6 7 20. How often do you have the opportunity to 2 1 provide feedback to your provider about the . . 1 5 services he/she provides? 8 6 9 1 21. How often does your provider connect you 1 1 with other families with similar life situations? . . 1 4 6 1 7 1 22. How often do you feel comfortable letting 3 1 your provider know if you disagree with medical . . 2 5 advice or recommendations for the treatment and 6 1 care of your CSHCN? 7 1 Running head: PARENT-DIRECTED CONSULTATION EVALUATION 11 23. How often do you feel like you are part of the 3 1 team making medical or treatment decisions for . . 1 5 your CSHCN? 8 1 9 7 Note. 1 = rarely; 2 = sometimes; 3 = half the time; 4 = most of the time; 5 = always

Using a rating scale where “1 = not confident,” “2 = somewhat confident,” and “3 = very confident,” the average caregiver was at least “somewhat confident” that their family could provide necessary provisions and services for their child with special health care needs prior to their PDC. Table 3 presents FCS Confidence results by question.

Table 3

Pre-PDC Family Coping Skills (Confidence) Responses

M M M e Question N a S in a x D n 24. How confident family able to provide 2 home-based medical care for CSHCN? . . 2 3 6 5 7 25. How confident family able to provide 2 1 access to professional medical care for . . 0 3 CSHCN? 3 1 3 1 26. How confident family able to provide 2 adequate nutrition for CSHCN? . . 1 3 6 7 7 27. How confident family able to gain access 2 to emotional or psych care for CSHCN? . . 1 3 3 7 3 28. How confident family able to provide 2 . access to education for CSHCN? . 1 3 7 4 3 4 29. How confident family able to provide 2 . environmental adaptations for CSHCN? . 1 3 7 4 3 4 Running head: PARENT-DIRECTED CONSULTATION EVALUATION 12 Note. 0 = not applicable; 1= not confident; 2 = somewhat confident; 3 = very confident

Using a rating scale where “1 = no support,” “2 = limited support,” “3 = moderate support,” “4 = above average support,” and “5 = complete support,” the average caregiver rated the amount of support they received from family, friends, and their community between

“limited” and “moderate” prior to their PDC. Table 4 shows FCS Support responses by question.

Table 4

Pre-PDC Family Coping Skills (Support) Responses

M M M e S Question N a in a D x n 30. How much support do you have from 2 . family members…? . 2 4 9 8 3 9 31. How much support do you have from 2 1 friends…? . . 1 5 8 1 9 7 32. How much support do you have from the 2 1 community…? . . 1 4 6 0 7 0 Note. 1=no support; 2 = limited support; 3 = moderate support; 4 = above average support; 5 = complete support Using the same FCC rating scale described above, the average caregiver reported receiving most aspects of family-centered care (FCC) either “sometimes” or “most of the time” one month following their PDC. Similar to the pre-PDC results, caregivers reported the highest

FCC ratings in relation to feeling like they were an active participant in developing the treatment and care plan for their child with special health care needs (mean = 4.44), and in feeling that their Running head: PARENT-DIRECTED CONSULTATION EVALUATION 13 provider honored their family’s spiritual and cultural beliefs (mean = 4.22). Again, caregivers reported the lowest FCC ratings in relation to how often their provider connected them to other families with similar life situations (mean = 1.89). Interestingly, the average score reported by caregivers regarding how often they had the ability to provide feedback to their provider about the services received increased by almost one point (from 2.89 to 3.67). Table 5 outlines average

FCC responses by question one month following a PDC.

Table 5

One Month Follow-up PDC Family-Centered Care Survey Responses

M M M e S Question N i a a D n x n 16. How often are you an active participant in 4 1 developing the treatment or care plan for your child . . 9 2 5 with special health care needs? 4 0 4 1 17. How often does your provider honor your cultural 4 . and spiritual beliefs when developing treatment or care . 7 2 5 7 plans for your CSHCN? 2 9 2 18. How often provider considers family insurance 4 1 status and economic situation when making treatment . . 9 1 5 plans for CSHCN? 0 2 0 3 19. How often is length of appointment with provider 4 1 adequate…? . 9 2 5 . 1 0 1 20. How often do you have the opportunity to provide 9 1 5 3 1 Running head: PARENT-DIRECTED CONSULTATION EVALUATION 14 feedback to your provider about the services he/she . . provides? 6 6 7 2 21. How often does your provider connect you with 1 1 other families with similar life situations? . . 9 1 4 8 1 9 6 22. How often do you feel comfortable letting your 4 . provider know if you disagree with medical advice or . 9 3 5 7 recommendations for the treatment and care of your 0 0 CSHCN? 0 23. How often do you feel like you are part of the team 4 1 making medical or treatment decisions for your . 9 2 5 . CSHCN? 0 0 0 Note. 1 = rarely; 2 = sometimes; 3 = half the time; 4 = most of the time; 5 = always

Using the same FCS Confidence rating scale described above, the average caregiver was at least “somewhat confident” that their family could provide necessary provisions and services for their child with special health care needs one month after their PDC. Table 6 presents FCS

Confidence results by question.

Table 6

One Month Follow-up PDC Family Coping Skills (Confidence) Responses

M M M e S Question N a in a D x n 2 . 24. How confident family able to provide . 2 3 5 home-based medical care for CSHCN? 5 3 0 Running head: PARENT-DIRECTED CONSULTATION EVALUATION 15 2 25. How confident family able to provide . . access to professional medical care for 2 3 3 8 CSHCN? 3 9 2 . 26. How confident family able to provide . 1 3 5 adequate nutrition for CSHCN? 6 0 7 2 . 27. How confident family able to gain access . 1 3 7 to emotional or psych care for CSHCN? 5 6 6 2 . 28. How confident family able to provide . 2 3 5 access to education for CSHCN? 6 0 7 2 . 29. How confident family able to provide . 1 4 8 environmental adaptations for CSHCN? 5 8 6 Note. 0 = not applicable; 1= not confident; 2 = somewhat confident; 3 = very confident

Using the same FCS Support rating scale outlined above, the average caregiver rated the amount of support they received from family, friends, and their community between “limited” and “moderate” one month following their PDC. Table 7 presents FCS Support results by question.

Table 7

One Month Follow-up PDC Family Coping Skills (Support) Responses

M M M e S Question N a in a D x n 30. How much support do you have from 2 . family members…? . 2 4 7 8 8 9 31. How much support do you have from 2 . friends…? . 1 4 8 6 7 7 32. How much support do you have from the 1 4 2 . Running head: PARENT-DIRECTED CONSULTATION EVALUATION 16 community…? . 9 7 7 8 Note. 1=no support; 2 = limited support; 3 = moderate support; 4 = above avg support; 5 = complete

On average, family-centered care composite scores increased dramatically from pre-PDC to one-month following the PDC (from 27.22 to 30.03), indicating a rise in caregiver perception of receiving family-centered care. Table 8 presents the pre-PDC and one-month follow-up scores by family.

Table 8

Family-Centered Care (FCC) Composite Scores

C h 1 month Pre-PDC a Family post-PDC FCC score n FCC score g e - 1 32 31 1 2 28 34 6 1 3 26 36 0 4 26 28 2 - 5 26 24 2 6 27 27 0 7 31 35 4 1 8 26 36 0 - 9 23 22 1 3. 1 ( Mean (SD) 27.22 (2.6) 30.03 (5) 4. 4 ) Running head: PARENT-DIRECTED CONSULTATION EVALUATION 17 On average, family coping skill composite scores remained fairly constant from pre-PDC to one-month following the PDC (from 23.33 to 23.8), indicating no real change in caregiver perception of being able to provide necessary services for their child with special health care needs or regarding the amount of support their family received. Table 9 presents the pre-PDC and one-month follow-up scores by family.

Table 9

Family Coping Skills (FCS) Composite Scores

C h 1 month Pre-PDC a Family after PDC FCS score n FCS score g e - 1 27 25 2 - 2 28 26 2 3 23 25 2 4 25 25 0 - 5 24 23 1 - 6 15 14 1 7 23 27 4 - 8 27 24 3 9 18 26 8 Running head: PARENT-DIRECTED CONSULTATION EVALUATION 18 .6 ( Mean (SD) 23.33 (4.1) 23.8 (3.7) 3. 3 )

In the immediate follow-up survey, 100% of the respondents reported that the trainee participants in the PDC listened to and address their concerns, respected their cultural and spiritual beliefs, and included their families as active members of the team. All of the respondents also reported that the length of the PDC was adequate to address their concerns.

Caregiver comments concerning the most helpful part of their experience and suggestions for improvement are listed below in Table 10. Two caregivers did not respond to the question soliciting suggestions for improvement.

Table 10

Family Comments in Immediate Follow-up Survey

F a m Most Helpful Part of Experience Suggestions for Improving PDC i l y Running head: PARENT-DIRECTED CONSULTATION EVALUATION 19

“The practical ideas received 1 from the specialists that we could “No, they did a wonderful job!” take home and work with our son”

“Amazing information all in a 2 small amount of time. I have a lot “No” of work to do, I am excited.” “Multiple perspectives - 3 unbiased representation of the “No” facts” 4 “It was all helpful” Question skipped

“Getting new perspective on our “I think it was a great 5 issues. It was nice to talk about the experience” medication issues.” 6 “Other perspectives” Question skipped “There were people attending that didn't present themselves, “Everything was great, but there and we don't know why they were was some short term solutions that 7 there for, and although it wasn't were really specific, like the U- uncomfortable for us, it may be Fit* program.” an issue in other circumstances or with other families.” “I didn't put together until we were there it was a video conference. I just thought the “All the different aspects brought 8 people from the other places together at once.” would have the info for us in a report. It was better on the video, just a surprise.” Note. *U-Fit is an adaptive recreation program through the University of Utah College of Health.

Discussion

Family-centered practitioners partner with families and use their expertise throughout the decision- and goal-making processes to provide individualized, culturally-responsive, and relevant services for each family. This study represents preliminary data for family perceptions of the extent of family-centered care received prior to and following a parent-directed consult Running head: PARENT-DIRECTED CONSULTATION EVALUATION 20 (PDC) with URLEND. This study also explored family coping skills prior to and one month following their participation in the PDC.

Results from this study indicated high levels of family satisfaction with their PDC experience. All families reported that their concerns were listened to and addressed within an appropriate amount of time during their PDC. All the families participating in the study felt that their cultural and spiritual beliefs were respected, and that they were an active member of the

PDC team. Overall, the PDC process was viewed as a positive experience. Some parents suggested adding introductions to all the team members participating in the PDC and better clarification about the structure of the PDCs (e.g., that the PDCs are conducted via video conferencing technology and include sites and trainees from up to five states).

Preliminary results indicated an increase in family-centered care scores for most participants between the pre-PDC and one-month follow-up surveys. The mean composite score increased by over 10 points between pre-PDC and one month follow-up surveys. There was no change in parent’s perception of being an active member in developing their child’s treatment plan. The family coping scores did not change from the pre-PDC to one-month follow-up.

While preliminary data indicated valuable information pertaining to the PDCs, several limitations should be noted. First, the sample was too small to make any of the findings generalizable. The number of participants in this study did not permit statistical analysis beyond descriptive statistics, thus the ability to examine the complex relationships between pre-parent directed consult responses and one month follow up responses could not be performed. Second, all families self-selected to participate in their PDC, which may influence their responses. Third, participating families had previous and/or continuing relationships with one or more trainees, Running head: PARENT-DIRECTED CONSULTATION EVALUATION 21 which may influence their survey responses. Fourth, the study lacked diversity, as the majority of participants were Caucasian, married mothers.

A larger sample size and ongoing data collection and assessment would benefit this study. It would be valuable to examine disparities in satisfaction and ease of service across different subcategories of special health care needs including: minority racial/ethnic status, socio-economic status, health insurance status, and the family’s primary language. Assessing these findings would provide a greater understanding of satisfaction and access to services suggested while partnering with providers in family centered care. Running head: PARENT-DIRECTED CONSULTATION EVALUATION 22 References

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Speech Hear Serv Sch, 42(3), 379-392. doi: 10.1044/0161-1461(2011/10-0016) Running head: PARENT-DIRECTED CONSULTATION EVALUATION 24 Appendix A: Pre-PDC Parent Survey

Demographic Information Please fill out the following information about yourself and your child with special health care needs. This information provides background for the rest of your answers on this survey. If you prefer not to answer a question, please leave it blank.

Caregiver Information

1. What is your relationship to your child with special health care needs? (please check one) _____ Mother (biological, step, adoptive, foster) _____ Father (biological, step, adoptive, foster) _____ Grandparent _____ Aunt/Uncle _____ Other relative _____ Other non-relative

2. Caregiver’s Age: ______

3. Marital Status (please check one) _____ Never married / Single _____ Married _____ Divorced _____ Widowed _____ Separated _____ Part of an unmarried couple

4. Primary language spoken at home (please check one) _____ English _____ Spanish _____ Other (please specify): ______

5. Racial and ethnic background (please check all that apply) _____ African American or Black _____ American Indian or Alaska Native _____ Asian _____ Caucasian or White _____ Hispanic or Latino _____ Native Hawaiian or Pacific Islander _____ Other Running head: PARENT-DIRECTED CONSULTATION EVALUATION 25 6. Do you identify with any of the following? (please check all that apply) _____ Agnostic _____ Anabaptist _____ Atheist _____ Buddhist _____ Christian _____ Catholic _____ Hindu _____ Jewish _____ Jewish Orthodox _____ Mormon/LDS _____ Muslim _____ Orthodox (Greek or Russian) _____ Protestant (Lutheran, Baptist, First Christian, Methodist, etc.) _____ Quaker _____ Seventh-Day Adventist _____ Spiritual, but not religious _____ I do not identify with an organized religion _____ Other (please specify): ______

7. What city and state do you currently live in? ______

Child Information

8. Age of child(ren) with special health care needs: ______

9. Age(s) of other children in the home: ______

10. Racial and ethnic background of child(ren) with special health care needs (please check all that apply) _____ African American or Black _____ American Indian or Alaska Native _____ Asian _____ Caucasian or White _____ Hispanic or Latino _____ Native Hawaiian or Pacific Islander _____ Other

11. Disability diagnosis or special health care needs of child(ren) receiving consultation (please describe) ______Running head: PARENT-DIRECTED CONSULTATION EVALUATION 26

Services Please fill out the following information about the health services your child(ren) with special health care needs has received.

12. In the table below, please tell us what types of services your child(ren) with special health care needs has received in the past, or is currently receiving by circling “yes” or “no.” For the services your child(ren) with special health care needs has received, please tell us about how long he/she received that service.

Type of Service Has your child ever Is your child currently How long did your received this service? receiving this service? child receive this service? Physical Therapy Yes No Yes No Occupational Yes No Yes No Therapy Speech Language Yes No Yes No Pathology Audiology Yes No Yes No Nutrition Yes No Yes No Special Education Yes No Yes No Genetics Yes No Yes No Psychology or Yes No Yes No Psychiatry Early Intervention Yes No Yes No Social Work Yes No Yes No Other (please Yes No Yes No describe):

13. In the past 12 months, has your child(ren) with special health care needs had consistent medical insurance? _____ Yes _____ No

13a. Comments? ______

14. What kind of place do you usually go when your child(ren) with special needs requires routine care? _____ Doctor’s office Running head: PARENT-DIRECTED CONSULTATION EVALUATION 27 _____ Hospital outpatient _____ Hospital Emergency Room _____ Clinic or health center _____ School (nurse’s office) _____ Friend/Relative _____ Internet _____ We do not have a usual place _____ Other (please explain): ______

15. Do you feel like you have access to providers who can address your questions and concerns about your child(ren) with special health care needs? _____ Yes _____ No

Family-Centered Care Please answer the following questions about the level of family-centered care you have received in the past.

16. How often are you an active participant in developing the treatment or care plan for your child(ren) with special health care needs? _____ Rarely _____ Sometimes _____ Half of the time _____ Most of the time Running head: PARENT-DIRECTED CONSULTATION EVALUATION 28 _____ Always

17. How often does your provider honor your cultural and spiritual beliefs when developing treatment or care plans for your child(ren) with special health care needs? _____ Rarely _____ Sometimes _____ Half of the time _____ Most of the time _____ Always

18. How often does your provider consider your family insurance status and economic situation when making treatment or care plans for your child(ren) with special health care needs? _____ Rarely _____ Sometimes _____ Half of the time _____ Most of the time _____ Always

19. How often is the length of your child’s appointment with his/her provider adequate for addressing your questions and concerns? _____ Rarely _____ Sometimes _____ Half of the time _____ Most of the time Running head: PARENT-DIRECTED CONSULTATION EVALUATION 29 _____ Always

20. How often do you have the opportunity to provide feedback to your provider about the services he/she provides (for example, in a survey, suggestion box, or parent committee)? _____ Rarely _____ Sometimes _____ Half of the time _____ Most of the time _____ Always

21. How often does your provider connect you with other families with similar life situations? _____ Rarely _____ Sometimes _____ Half of the time _____ Most of the time _____ Always

22. How often do you feel comfortable letting your provider know if you disagree with medical advice or recommendations for the treatment and care of your child with special health care needs? _____ Rarely Running head: PARENT-DIRECTED CONSULTATION EVALUATION 30 _____ Sometimes _____ Half of the time _____ Most of the time _____ Always

23. How often do you feel you are a part of the team making medical or treatment decisions for your child with special health care needs? _____ Rarely _____ Sometimes _____ Half of the time _____ Most of the time _____ Always

Family Coping Please answer the following questions about your family’s coping skills.

24. How confident are you in your family’s ability to provide home-based medical care for your child(ren) with special health care needs? (For instance, administering medications, tracheostomy care, etc.) _____ Not confident _____ Somewhat confident _____ Very confident _____ Not applicable

24a. Comments? ______Running head: PARENT-DIRECTED CONSULTATION EVALUATION 31 25. How confident are you in your family’s ability to provide access to professional medical care for your child with special health care needs? _____ Not confident _____ Somewhat confident _____ Very confident

26. How confident are you in your family’s ability to provide adequate nutrition for your child with special health care needs? _____ Not confident _____ Somewhat confident _____ Very confident

27. How confident are you in your family’s ability to gain access to emotional or psychological care for your child with special health care needs? _____ Not confident _____ Somewhat confident _____ Very confident _____ Not applicable

28. How confident are you in your family’s ability to provide access to education for your child with special health care needs? _____ Not confident _____ Somewhat confident _____ Very confident Running head: PARENT-DIRECTED CONSULTATION EVALUATION 32 28a. Comments? ______29. How confident are you in your family’s ability to provide environmental adaptations in your home for your child with special health care needs (such as hanging swings, ramps, or lifts)? _____ Not confident _____ Somewhat confident _____ Very confident _____ Not applicable

30. On average, how much support do you have from family members to help you cope with life challenges? Support can be emotional, financial, physical, etc. _____ No support _____ Limited support _____ Moderate support _____ Above average support _____ Complete support

31. On average, how much support do you have from friends to help you cope with life challenges? Support can be emotional, financial, physical, etc. _____ No support _____ Limited support _____ Moderate support _____ Above average support _____ Complete support

32. On average, how much support do you have from your community to help you cope with life challenges? Support can be emotional, financial, physical, etc. _____ No support _____ Limited support _____ Moderate support _____ Above average support _____ Complete support Running head: PARENT-DIRECTED CONSULTATION EVALUATION 33

33. When your family faces challenges or difficulties, how do you typically respond? (please check your top 3 choices). _____ Talk about your difficulties with friends, relatives, or a professional. _____ Seek advice or information from friends or relatives. _____ Seek advice or information from a professional (for instance a medical doctor) _____ Seek assistance from a community agency _____ Participate in religious or spiritual activities _____ Participate in sports or exercise _____ Watch TV _____ Other (please describe): ______

34. How often do you focus on your child(ren) with special health care needs’ challenges? _____ Rarely _____ Some days _____ Most days _____ Daily

Parent-Directed Consultation 35. Please tell us more about why you decided to participate in a Parent-Directed Consultation. ______Running head: PARENT-DIRECTED CONSULTATION EVALUATION 34 ______

Thank You! Running head: PARENT-DIRECTED CONSULTATION EVALUATION 35 Appendix B: PDC Immediate Follow-Up Parent Survey

Parent-Directed Consultation Please tell us about your experience participating in a Parent-Directed Consultation (PDC).

1. Do you feel that the PDC team members listened to your concerns during the consultation? _____ Yes _____ No

2. Do you feel that the PDC team members addressed your concerns during the consultation? _____ Yes _____ No

2a. If no, which of your concerns were not adequately addressed? Please describe. ______

3. Do you feel that the PDC team members respected your cultural and spiritual beliefs during the consultation? _____ Yes _____ No

4. Do you feel that the PDC team included you and your family as active members of the consultation? _____ Yes _____ No

5. Do you feel that the length of the PDC was adequate to address your concerns? _____ Yes _____ No

6. What was the most helpful part of your PDC? Please describe. ______Running head: PARENT-DIRECTED CONSULTATION EVALUATION 36

7. Do you have any suggestions on how to improve the PDCs? Please describe. ______

Thank You! Running head: PARENT-DIRECTED CONSULTATION EVALUATION 37 Appendix C: PDC One Month Follow-Up Parent Survey

Demographic Information Please update us on the following information about yourself. If possible, please have the same person who completed the “Pre-PDC Questionnaire” complete this survey. If you prefer not to answer a question, please leave it blank.

Caregiver Information

1. What is your relationship to your child with special health care needs? (please check one) _____ Mother (biological, step, adoptive, foster) _____ Father (biological, step, adoptive, foster) _____ Grandparent _____ Aunt/Uncle _____ Other relative _____ Other non-relative

2. Marital Status (please check one) _____ Never married / Single _____ Married _____ Divorced _____ Widowed _____ Separated _____ Part of an unmarried couple

3. What city and state do you currently live in? ______Running head: PARENT-DIRECTED CONSULTATION EVALUATION 38 Services Please fill out the following information about the health services your child(ren) with special health care needs has received.

4. In the table below, please tell us what types of services your child(ren) with special health care needs has received in the past, or is currently receiving by circling “yes” or “no.” For the services your child(ren) with special health care needs has received, please tell us about how long he/she received that service.

Type of Service Has your child ever Is your child currently How long did your received this service? receiving this service? child receive this service? Physical Therapy Yes No Yes No Occupational Yes No Yes No Therapy Speech Language Yes No Yes No Pathology Audiology Yes No Yes No Nutrition Yes No Yes No Special Education Yes No Yes No Genetics Yes No Yes No Psychology or Yes No Yes No Psychiatry Early Intervention Yes No Yes No Social Work Yes No Yes No Other (please Yes No Yes No describe):

5. In the past month, has your child(ren) with special health care needs had consistent medical insurance? _____ Yes _____ No

6. What kind of place do you usually go when your child(ren) with special needs requires routine care? _____ Doctor’s office _____ Hospital outpatient Running head: PARENT-DIRECTED CONSULTATION EVALUATION 39 _____ Hospital Emergency Room _____ Clinic or health center _____ School (nurse’s office) _____ Friend/Relative _____ Internet _____ We do not have a usual place _____ Other (please explain): ______

7. Do you feel like you have access to providers who can address your questions and concerns about your child(ren) with special health care needs? _____ Yes _____ No

Family-Centered Care Please answer the following questions about the level of family-centered care you have received in the past.

8. How often are you an active participant in developing the treatment or care plan for your child(ren) with special health care needs? _____ Rarely _____ Sometimes _____ Half of the time _____ Most of the time _____ Always Running head: PARENT-DIRECTED CONSULTATION EVALUATION 40 8a. Comments? ______

9. How often does your provider honor your cultural and spiritual beliefs when developing treatment or care plans for your child(ren) with special health care needs? _____ Rarely _____ Sometimes _____ Half of the time _____ Most of the time _____ Always

10. How often does your provider consider your family insurance status and economic situation when making treatment or care plans for your child(ren) with special health care needs? _____ Rarely _____ Sometimes _____ Half of the time _____ Most of the time _____ Always

11. How often is the length of your child’s appointment with his/her provider adequate for addressing your questions and concerns? _____ Rarely _____ Sometimes _____ Half of the time _____ Most of the time _____ Always Running head: PARENT-DIRECTED CONSULTATION EVALUATION 41 11a. Comments? ______

12. How often do you have the opportunity to provide feedback to your provider about the services he/she provides (for example, in a survey, suggestion box, or parent committee)? _____ Rarely _____ Sometimes _____ Half of the time _____ Most of the time _____ Always

13. How often does your provider connect you with other families with similar life situations? _____ Rarely _____ Sometimes _____ Half of the time _____ Most of the time _____ Always

14. How often do you feel comfortable letting your provider know if you disagree with medical advice or recommendations for the treatment and care of your child with special health care needs? _____ Rarely _____ Sometimes _____ Half of the time Running head: PARENT-DIRECTED CONSULTATION EVALUATION 42 _____ Most of the time _____ Always

15. How often do you feel you are a part of the team making medical or treatment decisions for your child with special health care needs? _____ Rarely _____ Sometimes _____ Half of the time _____ Most of the time _____ Always

Family Coping Please answer the following questions about your family’s coping skills.

16. How confident are you in your family’s ability to provide home-based medical care for your child(ren) with special health care needs? (For instance, administering medications, tracheostomy care, etc.) _____ Not confident _____ Somewhat confident _____ Very confident _____ Not applicable

16a. Comments? ______17. How confident are you in your family’s ability to provide access to professional medical care for your child with special health care needs? _____ Not confident Running head: PARENT-DIRECTED CONSULTATION EVALUATION 43 _____ Somewhat confident _____ Very confident

18. How confident are you in your family’s ability to provide adequate nutrition for your child with special health care needs? _____ Not confident _____ Somewhat confident _____ Very confident

19. How confident are you in your family’s ability to gain access to emotional or psychological care for your child with special health care needs? _____ Not confident _____ Somewhat confident _____ Very confident _____ Not applicable

20. How confident are you in your family’s ability to provide access to education for your child with special health care needs? _____ Not confident _____ Somewhat confident _____ Very confident

20a. Comments? ______Running head: PARENT-DIRECTED CONSULTATION EVALUATION 44 ______21. How confident are you in your family’s ability to provide environmental adaptations in your home for your child with special health care needs (such as hanging swings, ramps, or lifts)? _____ Not confident _____ Somewhat confident _____ Very confident _____ Not applicable

22. On average, how much support do you have from family members to help you cope with life challenges? Support can be emotional, financial, physical, etc. _____ No support _____ Limited support _____ Moderate support _____ Above average support _____ Complete support

23. On average, how much support do you have from friends to help you cope with life challenges? Support can be emotional, financial, physical, etc. _____ No support _____ Limited support _____ Moderate support _____ Above average support _____ Complete support

24. On average, how much support do you have from your community to help you cope with life challenges? Support can be emotional, financial, physical, etc. _____ No support _____ Limited support _____ Moderate support _____ Above average support _____ Complete support Running head: PARENT-DIRECTED CONSULTATION EVALUATION 45

25. When your family faces challenges or difficulties, how do you typically respond? (please check your top 3 choices). _____ Talk about your difficulties with friends, relatives, or a professional. _____ Seek advice or information from friends or relatives. _____ Seek advice or information from a professional (for instance a medical doctor) _____ Seek assistance from a community agency _____ Participate in religious or spiritual activities _____ Participate in sports or exercise _____ Watch TV _____ Other (please describe): ______

26. How often do you focus on your child(ren) with special health care needs’ challenges? _____ Rarely _____ Some days _____ Most days _____ Daily

Parent-Directed Consultation 27. One month ago, you participated in a PDC with URLEND. Were you satisfied with your experience? _____ Yes _____ No

27a. If no, what would have made the experience better? Please explain. ______Running head: PARENT-DIRECTED CONSULTATION EVALUATION 46 ______

28. Have you tried/implemented/followed-up with any of the suggestions or recommendations you received during the PDC? _____ Yes _____ No

28a. If yes, what have you tried and how is it going? Please explain. ______

29. Do you have any other suggestions on how we can improve the PDCs? ______

Thank You!