References
- Anderson, A. C., Akre, E., & Chen, J. (2019). Exploring national trends of patient- and family-centered care among US children. Journal of Child Health Care: For Professionals Working with Children in the Hospital and Community, 23(2), 200–212. https://doi.org/https://doi.org/10.1177/1367493518786015
- Beach, M. C., Roter, D. L., Wang, N.-Y., Duggan, P. S., & Cooper, L. A. (2006). Are physicians’ attitudes of respect accurately perceived by patients and associated with more positive communication behaviors? Patient Education and Counseling, 62(3), 347–354. https://doi.org/https://doi.org/10.1016/j.pec.2006.06.004
- Bleser, W. K., Young, S. I., & Miranda, P. Y. (2017). Disparities in patient- and family-centered care during US children’s health care encounters: A closer examination. Academic Pediatrics, 17(1), 17–26. https://doi.org/https://doi.org/10.1016/j.acap.2016.06.008
- Cartwright, D. (2013). ICD-9-CM to ICD-10-CM codes: What? Why? How? Advances in Wound Care, 2(10), 588–592. https://doi.org/https://doi.org/10.1089/2Fwound.2013.0478
- Committee on Hospital Care. (2003). Family-centered care and the pediatrician’s role. PEDIATRICS, 112(3), 691–696. https://doi.org/https://doi.org/10.1542/peds.112.3.691
- Committee on Hospital Care and Institute for Patient- and Family-Centered Care. (2012). Patient- and family-centered care and the pediatrician’s role. Pediatrics, 129(2), 394–404. https://doi.org/https://doi.org/10.1542/peds.2011-3084
- Crowley, J. L., & Miller, L. E. (2020). How people with opioid use disorder communicatively experience family: A family systems approach. Journal of Family Communication, 20(4), 298–312. https://doi.org/https://doi.org/10.1080/15267431.2020.1819283
- DeRosa, A. P., Baltich Nelson, B., Delgado, D., & Mages, K. C. (2019). Involvement of information professionals in patient- and family-centered care initiatives: A scoping review. Journal of the Medical Library Association, 107(3), 314–322. https://doi.org/https://doi.org/10.5195/jmla.2019.652
- DeVoe, J. E., Wallace, L. S., & Fryer, G. E., Jr. (2009). Measuring patients’ perceptions of communication with healthcare providers: Do differences in demographic and socioeconomic characteristics matter? Health Expectations, 12(1), 70–80. https://doi.org/https://doi.org/10.1111/j.1369-7625.2008.00516.x
- Dewan, T., & Cohen, E. (2013). Children with medical complexity in Canada. Paediatrics & Child Health, 18(10), 518–522. https://doi.org/https://doi.org/10.1093/pch/18.10.518
- Eldredge, S. A., Dalton, E. D., & Miller, L. E. (2014). Pain management as triadic interaction: Shifting alliances in nurse-patient-family-member communication. Southern Communication Journal, 79(5), 448–467. https://doi.org/https://doi.org/10.1080/1041794X.2014.928899
- Engelen, V., Detmar, S., Koopman, H., Maurice‐Stam, H., Caron, H., Hoogerbrugge, P., Egeler, R. M., Kaspers, G., & Grootenhuis, M. (2012). Reporting health-related quality of life scores to physicians during routine follow-up visits of pediatric oncology patients: Is it effective? Pediatric Blood & Cancer, 58(5), 766–774. https://doi.org/https://doi.org/10.1002/pbc.23158
- Epstein, R. M., & Street, R. L. (2007). Patient-centered communication in cancer care: Promoting healing and reducing suffering. National Cancer Institute, NIH Publication No. 07–6225.
- Gray, W. N., Janicke, D. M., Fennell, E. B., Driscoll, D. C., & Lawrence, R. M. (2011). Piloting behavioral family systems therapy to improve adherence among adolescents with HIV: A case series intervention study. Journal of Health Psychology, 16(5), 828–842. https://doi.org/https://doi.org/10.1177/1359105310394230
- Guerrero, A. D., Chen, J., Inkelas, M., Rodriguez, H. P., & Ortega, A. N. (2010). Racial and ethnic disparities in pediatric experiences of family-centered care. Medical Care, 48(4), 388–393. https://doi.org/https://doi.org/10.1097/MLR.0b013e3181ca3ef7
- Hagstrom, S. (2017). Family stress in pediatric critical care. Journal of Pediatric Nursing, 32, 32–40. https://doi.org/https://doi.org/10.1016/j.pedn.2016.10.007
- Hanson, C., Craig, J., & Tong, A. (2017). In their own words: The value of qualitative research to improve the care of children with chronic kidney disease. Pediatric Nephrology, 32(9), 1501–1507. https://doi.org/https://doi.org/10.1007/s00467-016-3526-y
- Head, K. J., & Bute, J. J. (2018). The influence of everyday interpersonal communication on the medical encounter: An extension of Street’s ecological model. Health Communication, 33(6), 786–792. https://doi.org/https://doi.org/10.1080/10410236.2017.1306474
- Hosmer, D. W., Lemeshow, S., & Sturdivant, R. X. (n.d.). Applied logistic regression (3rd ed). Wiley. Retrieved August 7, 2020, fromhttps://www.wiley.com/en-us/Applied+Logistic+Regression%2C+3rd+Edition-p–9780470582473
- Institute of Medicine (US) Committee on the National Quality Report on Health Care Delivery. (2001). Envisioning the national health care quality report. (M. P. Hurtado, E. K. Swift, & J. M. Corrigan Eds.). National Academies Press. http://www.ncbi.nlm.nih.gov/books/NBK223318/
- Kindratt, T. B., Dallo, F. J., Allicock, M., Atem, F., & Balasubramanian, B. A. (2020). The influence of patient-provider communication on cancer screenings differs among racial and ethnic groups. Preventive Medicine Reports, 18, 101086. https://doi.org/https://doi.org/10.1016/j.pmedr.2020.101086
- Kobussen, T. A., Hansen, G., Brockman, R. J., & Holt, T. R. (2020). Perspectives of pediatric providers on patients with complex chronic conditions: A mixed-methods sequential explanatory study. Critical Care Nurse, 40(5), e10–e17. https://doi.org/https://doi.org/10.4037/ccn2020710
- Kon, A. A., & Morrison, W. (2018). Shared decision-making in pediatric practice: A broad view. Pediatrics, 142(Suppl.3), S129–S132. https://doi.org/https://doi.org/10.1542/peds.2018-0516B
- Kuo, D. Z., Houtrow, A. J., Arango, P., Kuhlthau, K. A., Simmons, J. M., & Neff, J. M. (2012). Family-centered care: Current applications and future directions in pediatric health care. Maternal and Child Health Journal, 16(2), 297–305. https://doi.org/https://doi.org/10.1007/s10995-011-0751-7
- LaDonna, K. A., Watling, C. J., Ray, S. L., Piechowicz, C., & Venance, S. L. (2017). Evolving motivations: Patients’ and caregivers’ perceptions about seeking Myotonic Dystrophy (DM1) and Huntington’s disease care. Qualitative Health Research, 27(11), 1727–1737. https://doi.org/https://doi.org/10.1177/1049732317711901
- Leake, E., Koopmans, E., & Sanders, C. (2020). Primary care providers involvement in caring for young adults with complex chronic conditions exiting pediatric care: An integrative literature review. Comprehensive Child and Adolescent Nursing, 1–22. https://doi.org/https://doi.org/10.1080/24694193.2020.1733707
- Lindly, O. J., Zuckerman, K. E., & Mistry, K. B. (2017). Clarifying the predictive value of family‐centered care and shared decision making for pediatric healthcare outcomes using the Medical Expenditure Panel Survey. Health Services Research, 52(1), 313–345. https://doi.org/https://doi.org/10.1111/1475-6773.12488
- Lindsay, S., Fellin, M., Cruickshank, H., McPherson, A., & Maxwell, J. (2016). Youth and parents’ experiences of a new inter-agency transition model for spina bifida compared to youth who did not take part in the model. Disability and Health Journal, 9(4), 705–712. https://doi.org/https://doi.org/10.1016/j.dhjo.2016.05.009
- Mazor, K. M., Beard, R. L., Alexander, G. L., Arora, N. K., Firneno, C., Gaglio, B., Greene, S. M., Lemay, C. A., Robinson, B. E., Roblin, D. W., Walsh, K., Street, R. L., & Gallagher, T. H. (2013). Patients’ and family members’ views on patient-centered communication during cancer care: Patient and family views on cancer communication. Psycho-Oncology, 22(11), 2487–2495. https://doi.org/https://doi.org/10.1002/pon.3317
- McPhail, S. M. (2016). Multimorbidity in chronic disease: Impact on health care resources and costs. Risk Management and Healthcare Policy, 9, 143–156. https://doi.org/https://doi.org/10.2147/RMHP.S97248
- Medical Expenditure Panel Survey Content Summary of the Household Interview. (n.d.). Retrieved July 1, 2020, from https://www.meps.ahrq.gov/mepsweb/survey_comp/hc_data_collection.jsp.
- Moretz, J. G., & Abraham, M. (2012). Implementing patient- and family-centered care: Part II – Strategies and resources for success. Pediatric Nursing, 38(2), 106–109. [PMID: 22685872].
- Murrell, D. V., Crawford, C. A., Jackson, C. T., Lotze, T. E., & Wiemann, C. M. (2018). Identifying opportunities to provide family-centered care for families with children with Type 1 Spinal Muscular Atrophy. Journal of Pediatric Nursing, 43, 111–119. https://doi.org/https://doi.org/10.1016/j.pedn.2018.09.007
- Nightingale, R., Friedl, S., & Swallow, V. (2015). Parents’ learning needs and preferences when sharing management of their child’s long-term/chronic condition: A systematic review. Patient Education and Counseling, 98(11), 1329–1338. https://doi.org/https://doi.org/10.1016/j.pec.2015.05.002
- October, T. W., Hinds, P. S., Wang, J., Dizon, Z. B., Cheng, Y. I., & Roter, D. L. (2016). Parent satisfaction with communication is associated with physician’s patient-centered communication patterns during family conferences. Pediatric Critical Care Medicine, 17(6), 490–497. https://doi.org/https://doi.org/10.1097/PCC.0000000000000719
- Pallapies, D. (2006). Trends in childhood disease. Mutation Research/Genetic Toxicology and Environmental Mutagenesis, 608(2), 100–111. https://doi.org/https://doi.org/10.1016/j.mrgentox.2006.03.007
- Park, M., Giap, -T.-T.-T., Lee, M., Jeong, H., Jeong, M., & Go, Y. (2018). Patient- and family-centered care interventions for improving the quality of health care: A review of systematic reviews. International Journal of Nursing Studies, 87, 69–83. https://doi.org/https://doi.org/10.1016/j.ijnurstu.2018.07.006
- Pratt, K. J., & Skelton, J. A. (2018). Family functioning and childhood obesity treatment: A family systems theory-informed approach. Academic Pediatrics, 18(6), 620–627. https://doi.org/https://doi.org/10.1016/j.acap.2018.04.001
- Rauscher, E. A., Hesse, C., & Campbell-Salome, G. (2020). Applying family communication patterns to patient-provider communication: Examining perceptions of patient involvement, satisfaction, and medical adherence. Journal of Health Communication, 25(2), 180–189. https://doi.org/https://doi.org/10.1080/10810730.2020.1728596
- Romaire, M. A., & Bell, J. F. (2010). The medical home, preventive care screenings, and counseling for children: Evidence from the Medical Expenditure Panel Survey. Academic Pediatrics, 10(5), 338–345. https://doi.org/https://doi.org/10.1016/j.acap.2010.06.010
- Sampson, R., O’Rourke, J., Hendry, R., Heaney, D., Holden, S., Thain, A., & MacVicar, R. (2013). Sharing control of appointment length with patients in general practice: A qualitative study. The British Journal of General Practice, 63(608), e185–e191. https://doi.org/https://doi.org/10.3399/bjgp13X664234
- Schlucter, J. (2014). Patient- and family-centered transitions from pediatric to adult care. Pediatric Nursing, 40(6), 307–310. [PMID: 25929127].
- Simon, T. D., Berry, J., Feudtner, C., Stone, B. L., Sheng, X., Bratton, S. L., Dean, J. M., & Srivastava, R. (2010). Children with complex chronic conditions in inpatient hospital settings in the United States. Pediatrics, 126(4), 647–655. https://doi.org/https://doi.org/10.1542/peds.2009-3266
- Street, R. L. (2003). Communication in medical encounters: An ecological perspective. In T. L. Thompson, A. M. Dorsey, K. I. Miller, & R. Parrott (Eds.), Handbook of health communication (pp. 63–89). Lawrence Erlbaum.
- Street, R. L. (2013). How clinician–patient communication contributes to health improvement: Modeling pathways from talk to outcome. Patient Education and Counseling, 92(3), 286–291. https://doi.org/https://doi.org/10.1016/j.pec.2013.05.004
- Tomlinson, D., Yuan, C., Cheng, L., & Hinds, P. S. (2020). Patient-reported outcomes in pediatric oncology: The voice of the child. In P. S. Hinds & L. Linder (Eds.), Pediatric oncology nursing: Defining care through science (pp. 107–129). Springer. https://doi.org/https://doi.org/10.1007/978-3-030-25804-7_7
- Uhl, T., Fisher, K., Docherty, S. L., & Brandon, D. H. (2013). Insights into patient and family‐centered care through the hospital experiences of parents. Journal of Obstetric, Gynecologic, & Neonatal Nursing, 42(1), 121–131. https://doi.org/https://doi.org/10.1111/1552–6909.12001
- White, P. H., & Cooley, W. C. (2018). Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics, 142(5), 1–20. https://doi.org/https://doi.org/10.1542/peds.2018-2587
- Yehya, N. A., & Dutta, M. J. (2015). Articulations of health and poverty among women on WIC. Health Communication, 30(12), 1223–1233. https://doi.org/https://doi.org/10.1080/10410236.2014.925380
- Yu, J. A., Schenker, Y., Maurer, S. H., Cook, S. C., Kavlieratos, D., & Houtrow, A. (2019). Pediatric palliative care in the medical neighborhood for children with medical complexity. Families, Systems & Health: The Journal of Collaborative Family HealthCare, 37(2), 107–119. https://doi.org/https://doi.org/10.1037/fsh0000414
- Zablotsky, B., Black, L. I., & Blumberg, S. J. (2017). Estimated prevalence of children with diagnosed developmental disabilities in the United States, 2014–2016 (NCHS Data Brief No. 291; p. 8). National Center for Health Statistics. https://www.cdc.gov/nchs/data/databriefs/db291.pdf