Exploring the usefulness of comprehensive care plans for children with medical complexity (CMC): a qualitative study

BMC Pediatrics

David B Nicholas⁵  Radha MacCulloch⁴  Jeremy N Friedman¹  Sanjay Mahant¹  Eyal Cohen²  Sherri Adams³ 

[1] Department of Paediatrics, University of Toronto, 1 King’s College Circle, Toronto, Ontario, M5S 1A8, Canada;CanChild Center for Childhood Disability Research, 1400 Main Street West, Room 408, Hamilton, Ontario, L8S 1C7, Canada;Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, 155 College Street, Suite 130, Toronto, Ontario, M5T 1P8, Canada;School of Social Work, McGill, University of Montreal, 3506 University Street, Montreal, Quebec, H3A 2A7, Canada;Faculty of Social Work, University of Calgary, 2500 University Drive NW, Calgary, Alberta, T2N 1N4, Canada

关键词: Children with special healthcare needs;    Children with medical complexity;    Care plan;    Complex care;   

Others  :  1164279
DOI  :  10.1186/1471-2431-13-10

 received in 2012-08-29, accepted in 2013-01-04,  发布年份 2013

【 摘 要 】

Background

The Medical Home model recommends that Children with Special Health Care Needs (CSHCN) receive a medical care plan, outlining the child’s major medical issues and care needs to assist with care coordination. While care plans are a primary component of effective care coordination, the creation and maintenance of care plans is time, labor, and cost intensive, and the desired content of the care plan has not been studied. The purpose of this qualitative study was to understand the usefulness and desired content of comprehensive care plans by exploring the perceptions of parents and health care providers (HCPs) of children with medical complexity (CMC).

Methods

This qualitative study utilized in-depth semi-structured interviews and focus groups. HCPs (n = 15) and parents (n = 15) of CMC who had all used a comprehensive care plan were recruited from a tertiary pediatric academic health sciences center. Themes were identified through grounded theory analysis of interview and focus group data.

Results

A multi-dimensional model of perceived care plan usefulness emerged. The model highlights three integral aspects of the care plan: care plan characteristics, activating factors and perceived outcomes of using a care plan. Care plans were perceived as a useful tool that centralized and focused the care of the child. Care plans were reported to flatten the hierarchical relationship between HCPs and parents, resulting in enhanced reciprocal information exchange and strengthened relationships. Participants expressed that a standardized template that is family-centered and includes content relevant to both the medical and social needs of the child is beneficial when integrated into overall care planning and delivery for CMC.

Conclusions

Care plans are perceived to be a useful tool to both health care providers and parents of CMC. These findings inform the utility and development of a comprehensive care plan template as well as a model of how and when to best utilize care plans within family-centered models of care.

【 授权许可】

   
2013 Adams et al.; licensee BioMed Central Ltd.

【 图 表 】

Figure 1.

Figure 2.

【 参考文献 】

• [1]Bethell C, Read D, Brockwood K: Using existing population based data sets to measure the American Academy of Pediatrics definition of medical home for all children and children with special health care needs. Pediatrics 2004, 113:1529-1537.
• [2]Cohen E, Friedman J, Nicholas DB, Adams S, Rosenbaum P: A home for medically complex children: the role of hospital programs. J Healthc Qual 2008, 30(3):7-15.
• [3]Dosa NP, Boeing NM, Ms N, Kanter RK: Excess risk of severe acute illness in children with chronic health conditions. Pediatrics 2001, 107(3):499-504.
• [4]Gordon JB, Colby HH, Bartelt T, Jablonski D, Krauthoefer ML, Havens P: A tertiary care-primary care partnership model for medically complex and fragile children and youth with special health care needs. Arch Pediatr Adolesc Med 2007, 161(10):937-944.
• [5]Srivastava R, Stone BL, Murphy NA: Hospitalist care of the medically complex child. Pediatr Clin North Am 2005, 52(4):1165-1187.
• [6]van Dyck PC, Kogan MD, McPherson MG, Weissman GR, Newacheck PW: Prevalence and characteristics of children with special health care needs. Arch Pediatr Adolesc Med 2004, 158(9):884-890.
• [7]Raina P, O'Donnell M, Rosenbaum P, Brehaut J, Walter SD, Russell D, Swinton M, Zhu B, Wood E: The health and well-being of caregivers of children with cerebral palsy. Pediatrics 2005, 115(6):e626-e636.
• [8]Sacchetti A, Sacchetti C, Carraccio C, Gerardi M: The potential for errors in children with special health care needs. Acad Emerg Med 2000, 7(11):1330-1333.
• [9]Slonim AD, LaFleur BJ, Ahmed W, Joseph JG: Hospital-reported medical errors in children. Pediatrics 2003, 111(3):617-621.
• [10]Newacheck PW, Kim SE: A national profile of health care utilization and expenditures for children with special health care needs. Arch Pediatr Adolesc Med 2005, 159(1):10-17.
• [11]Newacheck PW, Strickland B, Shonkoff JP, Perrin JM, McPherson M, McManus M, et al.: An epidemiologic profile of children with special health care needs. Pediatrics 1998, 102(Part 1):117-123.
• [12]Medical Home Initiatives for Children with Special Needs Project Advisory Committee American Academy of Pediatrics: The medical home. Pediatrics 2002, 110(Pt. 1):184-186.
• [13]American Academy of Pediatrics Council on Children with Disabilities: Care coordination in the medical home: integrating health and related systems of care for children with special health care needs. Pediatrics 2005, 116(5):1238-1244.
• [14]Berry JG, Goldman DA, Mandl KD, Putney H, Helm D, O'Brien J, Antonelli R, Weinick RM: Health information management and perceptions of the quality of care for children with tracheotomy: A qualitative study. BMC Health Serv Res 2011, 11:117. BioMed Central Full Text
• [15]Kelly AM, Kratz B, Bielski M, Mann Rinehart P: Implementing Transitions for Youth With Complex Chronic Conditions Using the Medical Home Model. Pediatrics 2002, 110(6):1322-1327.
• [16]Farmer JE, Clark MJ, Sherman A, Marien WE, Selva TJ: Comprehensive Primary Care for Children With Special Health Care Needs in Rural Areas. Pediatrics 2005, 116(3):649-656.
• [17]American Academy of Pediatrics, Committee on Pediatric Emergency Medicine and Council on Clinical Information Technology, American College of Emergency Physicians, Pediatric Emergency Medicine Committee: Policy statement--emergency information forms and emergency preparedness for children with special health care needs. Pediatrics 2010, 125(4):829-837.
• [18]Farmer JE, Clark MJ, Harlan Drewel E, Swensen TM, Ge B: Consultative Care Coordination Through the Medical Home for CSHCN: A Randomized Controlled Trial. Matern Child Health J 2011, 15:1110-1118.
• [19]Adams S, Mahant S: Care of the Medically Complex Child - Introduction to the Medically Complex Child. In Comprehensive Pediatric Hospital Medicine. Edited by Zaoutis LB, Chiang VW. Philadelphia: Elsevier; 2007:1185.
• [20]The National Centre of Medical Home Inititaves for Children with Special Needs - Medical Care Plans/Assessment Forms. http://www.medicalhomeinfo.org/tools/assess.html webcite
• [21]Stewart D, Law M, Burke-Gaffney J, Missiuna C, Rosenbaum P, King G, et al.: Keeping It Together: an information KIT for parents of children and youth with special needs. Child Care Health Dev 2006, 32(4):493-500.
• [22]Rocco N, Scher K, Basberg B, Yalamanchi S, Baker-Genaw K: Patient-Centered Plan-of-Care Tool for Improving Clinical Outcomes. Q Manage Health Care 2011, 20(2):89-97.
• [23]Palfrey JS, Sofis LA, Davidson EJ, Liu J, Freeman L, Ganz ML: The Pediatric Alliance for Coordinated Care: evaluation of a medical home model. Pediatrics 2004, 113(5 Suppl):1507-1516.
• [24]Cohen E, Kuo DZ, Agrawal R, Berry JG, Bhagat SK, Simon TD, Srivastava R: Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics 2011, 127(3):529-538.
• [25]Rosenbaum P: Report of the Paediatric Complex Care Coordination Expert Panel. 2008.
• [26]Cohen E, Berry JG, Camacho X, Anderson G, Wodchis W, Guttman A: Patterns and Costs of Health Care Use of Children With Medical Complexity. Pediatrics 2012, 130(6):e1463-e1470.
• [27]Stille CJ, Primack WA, McLaughlin TJ, Wasserman RC: Parents as Information Intermediaries Between Primary Care and Specialty Physicians. Pediatrics 2007, 120(6):1238-1246.
• [28]Creswell WJ: Qualitative Inquiry and Research Design: Choosing Among Five Traditions. Thousand Oaks, California: SAGE Publications; 1998.
• [29]Strauss A, Corbin J: Basics of Qualitative Research. Newbury Park, CA: Sage; 1990.
• [30]Cohen E, Friedman JN, Mahant S, Adams S, Jovcevska V, Rosenbaum P: The impact of a complex care clinic in a children's hospital. Child Care Health Dev 2010, 36(4):574-582.
• [31]Cohen E, Lacombe-Duncan A, Spalding K, MacInnis J, Nicholas D, Narayanan UG, Gordon M, Margolis I, Frideman JN: Integrated complex care coordination for children with medical complexity: A mixed-methods evaluation of tertiary care-community collaboration. BMC Health Serv Res 2012, 12(1):366. E-pub ahead of print BioMed Central Full Text
• [32]Kitzinger J: Qualitative research. Introducing focus groups. Bmj 1995, 311(7000):299-302.
• [33]Richards L: Handling Qualitative Data: a Practical Guide. London: Sage; 2005.
• [34]Institute of Medicine: Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academy Press; 2001.
• [35]Malouin RA, Merten SL: Measuring Medical Homes: Tools to Evaluate the Pediatric Patient- and Family-Centered Medical Home. Michigan State University: Department of Pediatrics and Human Development, College of Human Medicine; 2010.
• [36]Ko H, Turner T, Jones C, Hill C: Patient-held medical records for patients with chronic disease: a systematic review. Qual Saf Health Care 2010, 19(5):e41.
• [37]Stein RE, Westbrook LE, Bauman LJ: The Questionnaire for Identifying Children With Chronic Conditions: a measure based on a noncategorical approach. Pediatrics 1997, 99:513-521.
• [38]Denboba D, McPherson MG, Kenney M, Strickland B, Newacheck PW: Achieving Family and Provider Partnerships for Children With Special Health Care Needs. Pediatrics 2006, 118:1607-1615.
• [39]Miller AR, Condin CJ, McKellin WH, Shaw N, Klassen AF, Sheps S: Continuity of care for children with complex chronic health conditions: parents' perspectives. BMC Health Serv Res 2009, 9:242. BioMed Central Full Text
• [40]Simon TD, Berry J, Feudtner C, Stone BL, Sheng X, Bratton SL, Dean JM, Srivastava R: Children with complex chronic conditions in inpatient hospital settings in the United States. Pediatrics 2010, 126(4):647-655.