Abstract
This chapter begins with an overview of paediatric patient-centred care, with a focus on child and family-centered care (C&FCC). For clarity, the term ‘C&FCC’ is largely used throughout the chapter. Following this initial overview, an examination of theoretical foundations and other influences that inform our understanding of C&FCC is presented. A brief and critical review of existing evidence for C&FCC is outlined, and is illustrated by selected research, including systematic reviews, outcome-based evaluations, and studies addressing individual C&FCC practices or interventions. Overall, the evidence for C&FCC is limited; however, it increasingly points to the positive impact of C&FCC on a range of outcomes and processes related to health, mental health, well-being, satisfaction and family functioning. There is emerging consensus about core elements that comprise C&FCC and, increasingly, the body of literature indicates that C&FCC merits ongoing implementation and evaluation in seeking effective paediatric healthcare.
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References
Adams, A., D. Theodore, and E. Goldenberg, et al. 2010. Kids in the atrium: Comparing architectural intentions and children’s experiences in a pediatric hospital lobby. Social Science & Medicine 70:658–667. doi:10.1016/j.socscimed.2009.10.049.
Adler, J. 2009. Establishing patient and family-centered care in a non-academic pediatric intensive care unit. Physician Executive 35 (5): 50–52.
American Academy of Family Physicians, American Academy of Pediatrics, American College of Physicians, et al. 2011. Guidelines for patient-centered medical home (PCMH) recognition and accreditation programs. http://www.acponline.org/running_practice/pcmh/understanding/guidelines_pcmh.pdf. Accessed 1 Sept 2012.
American Academy of Pediatrics. 2003. Family pediatrics: Report of the task force on the family. Pediatrics 111:1541–1571.
American Academy of Pediatrics. 2012. Patient and family-centered care and the pediatrician’s role. Pediatrics 129 (2): 394–404. doi:10.1542/peds.2011-3084.
American College of Obstetricians and Gynecologists. 1978. Joint position statement: The development of family-centered maternity/newborn care in hospitals—Interprofessional task force on health care of women and children Journal of Obstetric, Gynecologic, & Neonatal Nursing 7 (5): 55–59.
Arango, P. 2011. Family-centered care. Academic Pediatrics 11 (2): 97–99.
Bolton, C. M. 2004. An evaluation of the quality of different forms of early postoperative care in children following tonsillectomy. Diss., University of Melbourne.
Bugental, D. B., A. Schwartz, and C. Lynch. 2010. Effects of an early family intervention on children’s memory: The mediating effects of cortisol levels. Mind, Brain, and Education 4:159–170.
Campbell, C., J. Craig, and J. Eggert, et al. 2010. Implementing and measuring the impact of patient navigation at a comprehensive community cancer center. Oncology Nursing Forum 37 (1): 61–68.
CanChild (Centre for Childhood Disability Research). 2010. Myths about family-centred service. http://www.canchild.ca/en/childrenfamilies/resources/FCSSheet2.pdf. Accessed 20 Aug 2012.
Cannon, S. 2011. Family-centered care in the critical care setting: Is it best practice? Dimensions of Critical Care Nursing 30 (5): 241–245. doi:10.1097/DC.0b013e3182276f9a.
Chauke, H. I., and R. C. Pattinson. 2006. Ward rounds: Bedside or conference? South African Medical Journal 96:398–400.
Corlett, J., and A. Twycross. 2006. Negotiation of parental roles within family-centred care: A review of the research. Journal of Clinical Nursing 15:1308–1316.
Coyne, I., C. O’Neill, and M. Murphy, et al. 2011. What does family-centered care mean to nurses and how do they think it could be enhanced in practice. Journal of Advanced Nursing 67 (12): 2561–2573. doi:10.1111/j.1365-2648.2011.05768.x.
Dickoff, J., P. James, and E. Wiedenbach. 1968. Theory in a practice discipline: Part 1. Practice oriented theory. Nursing Research 17 (5): 415–435.
Epstein, R. M., and R. L. Street. 2011. The values and value of patient-centered care. Annals of Family Medicine 9 (2): 100–103. doi:10.1370/afm.1239.
Ferrante, J. M., D. J. Cohen, and J. C. Crosson. 2010. Translating the patient navigator approach to meeting the needs of primary care. Journal of the American Board of Family Medicine 23 (6): 736–744. doi:10.3122/jabfm.2010.06.100085.
Frost, M., A. Green, B. Gance-Cleveland, et al. 2010. Improving family-centered care through research. Journal of Pediatric Nursing 25 (2): 144–147. doi:10.1016/j.pedn.2009.09.001.
Gooding, J. S., L. G. Cooper, and A. I. Blaine, et al. 2011. Family support and family-centered care in neonatal intensive care unit: Origins, advances, impact. Seminars in Perinatology 35 (1): 20–28. doi:10.1053/j.semperi.2010.10.004.
Greenfield, S., S. H. Kaplan, and J. E. Ware, et al. 1988. Patients’ participation in medical care: Effects on blood sugar control and quality of life in diabetes. Journal of General Internal Medicine 3 (5): 448–457.
Griffin, S. J., A. L. Kinmonth, and M. W. Veltman, et al. 2004. Effect on health related outcomes of interventions to alter the interaction between patients and practitioners: A systematic review of trials. Annals of Family Medicine 2 (6): 595–608.
Harrison, T. M. 2010. Family-centered pediatric nursing care: State of the science. Journal of Pediatric Nursing 25 (5): 335–343. doi:10.1016/j.pedn.2009.01.006.
Henbest, R. J., and M. A. Stewart. 1989. Patient-centredness in the consultation: A method for measurement. Family Practice 6 (4): 249–253.
Hjorngaard, T. 2011. Family-centred care: A critical perspective. Physical & Occupational Therapy in Pediatrics 31 (3): 243–244. doi:10.3109/01942638.2011.589728.
Howitt, M. J. 2011. The family care coordinator: Paving the way to seamless care. Journal of Pediatric Oncology Nursing 28 (2): 107–113. doi:10.1177/1043454210377331.
Hutchfield, K. 1999. Family-centred care: A concept analysis. Journal of Advanced Nursing 29 (5): 1178–1187.
Institute of Medicine, Committee on Quality of Health Care in America. 2001. Crossing the quality chasm: A new health system for the 21st century. Washington: National Academy.
Johnson, B. H., M. R. Abraham, and T. L. Shelton. 2009. Patient and family-centered care: Partnerships for quality and safety. North Carolina Medical Journal 70 (2): 125–130.
Kaplan, S. H., S. Greenfield, and J. E. Ware Jr. 1989. Assessing the effects of physician-patient interactions on the outcomes of chronic disease. Medical Care 27 (3 Suppl): S110–S127.
Krupat, E., S. L. Rosenkranz, and C. M. Yeager, et al. 2000. The practice orientations of physicians and patients: The effect of doctor-patient congruence on satisfaction. Patient Education and Counseling 39 (1): 49–59.
Kuhlthau, K. A., S. Bloom, and J. Van Cleave, et al. 2011. Evidence for family-centered care for children with special health care needs: A systematic review. Academic Pediatrics 11 (2): 136–143. doi:10.1016/j.acap.2010.12.014.
Lasser, K. E., J. Murillo, E. Medlin, et al. 2009. A multilevel intervention to promote colorectal cancer screening among community health center patients: Results of a pilot study. BMC Family Practice 10 (37). doi:10.1186/1471-2296-10-37.
McClimans, L. M., M. Dunn, and A. Slowther. 2011. Health policy, patient-centered care and clinical ethics. Journal of Evaluation in Clinical Practice 17 (5): 913–919. doi:10.1111/j.1365-2753.2011.01726.x.
Mortez, J. G. 2010. Strengthening patient and family-centered care: Learning through webinars. Pediatric Nursing 36 (3): 168–170.
Muething, S. E., U. R. Kotagal, and P. J. Schoettker, et al. 2007. Family-centered bedside rounds: A new approach to patient care and teaching. Pediatrics 119 (4): 829–832.
Nicholas, D. B., and K. Keilty. 2007. An evaluation of dyadic peer support for care giving parents of children with chronic lung disease requiring technology assistance. Social Work in Health Care 44 (3): 245–259.
Nicholas, D. B., G. Picone, and A. Vigneux, et al. 2009. Evaluation of an online peer network for adolescents with chronic kidney disease. Journal of Technology in Human Services 27 (1): 23–33.
Ontario Ministry of Health and Long-term Care. 2011. The excellent care for all act. www.health.gov.on.ca/en/legislation/excellent_care. Accessed 10 Sept 2012.
Palmer, S. 1993. Care of sick children by parents: A meaningful role. Journal of Advanced Nursing 18 (2): 185–191.
Palmieri, F. M., E. R. DePeri, and B. A. Mincey, et al. 2009. Comprehensive diagnostic program for medically underserved women with abnormal breast screening evaluations in an urban population. Mayo Clinic Proceedings 84 (4): 317–322. doi:10.1016/S0025-6196(11)60539-9.
Public Health Agency of Canada. 2000. Family-centred maternity and newborn care: National guidelines. http://www.phac-aspc.gc.ca/hp-ps/dca-dea/publications/fcmnc-smnnpf/index-eng.php. Accessed 10 Aug 2012.
Rolland, J. S., and F. W. Walsh. 2006. Facilitating family resilience with childhood illness and disability. Current Opinion Pediatrics 18 (5): 527–538.
Shelton, T., E. Jeppson, and B. Johnson. 1987. Family-centered care for children with special health care needs. 2nd ed. Washington: The Association for the Care of Children’s Health.
Shields, L., J. Pratt, and J. Hunter. 2006. Family centred care: A review of qualitative studies. Journal of Clinical Nursing 15 (10): 1317–1323.
Shields, L., H. Zhou, J. Pratt, et al. 2012. Family-centered care for hospitalised children aged 0–12 years. Cochrane Database of Systematic Reviews 10:CD004811. doi:10.1002/14651858.CD004811.pub3.
Sine, D. M., and V. A. Sharpe. 2011. Ethics, risks, and patient-centered care: How collaboration between clinical ethicists and risk management leads to respectful patient care. Journal of Healthcare Risk Management 31 (1): 32–37.
Sisterhen, L. L., R. T. Blaszak, M. B. Woods, et al. 2007. Defining family-centered rounds. Teaching and Learning in Medicine 19 (3): 319–322.
Stewart, M., J. B. Brown, and H. Boon, et al. 1999. Evidence on patient-doctor communication. Cancer Prevention and Control 3 (1): 25–30.
Stewart, M., J. B. Brown, and A. Donner, et al. 2000. The impact of patient-centered care on outcomes. Journal of Family Practice 49 (9): 796–804.
Stewart, M., J. B. Brown, and J. Hammerton, et al. 2007. Improving communication between doctors and breast cancer patients. Annals of Family Medicine 5 (5): 387–394.
Stremler, R., L. Wong, and C. Parshuram. 2008. Practices and provisions for parents sleeping overnight with a hospitalized child. Journal of Pediatric Psychology 33 (3): 292–297. doi:10.1093/jpepsy/jsm096.
Stremler, R., Z. Dhukai, and L. Wong, et al. 2011. Factors influencing sleep for parents of critically ill hospitalised children: A qualitative analysis. Intensive and Critical Care Nursing 27:37–45.
U.S. Congress. 1975. Public Law 94-142, Education for all handicapped children act, 29 Nov 1975.
Wells, K. J., T. A. Battaglia, and D. J. Dudley, et al. 2008. Patient navigation: State of the art or is it science? Cancer 113:1999–2010.
Zupanec, S., H. Jones, and R. Stremler. 2010. Sleep habits and fatigue of children receiving maintenance chemotherapy for all and their parents. Journal of Pediatric Oncology Nursing 27:217–228.
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Nicholas, D., Keilty, K., Karmali, K. (2014). Paediatric Patient-Centred Care: Evidence and Evolution. In: Zlotnik Shaul, R. (eds) Paediatric Patient and Family-Centred Care: Ethical and Legal Issues. International Library of Ethics, Law, and the New Medicine, vol 57. Springer, New York, NY. https://doi.org/10.1007/978-1-4939-0323-8_1
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