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Open Access Research article

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

Sherri Adams12*, Eyal Cohen1345, Sanjay Mahant13, Jeremy N Friedman13, Radha MacCulloch6 and David B Nicholas7

Author affiliations

1 Division of Paediatric Medicine, The Hospital for Sick Children, 555 University Avenue, Toronto, ON, M5G 1X8, Canada

2 Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, 155 College Street, Suite 130, Toronto, Ontario, M5T 1P8, Canada

3 Department of Paediatrics, University of Toronto, 1 King’s College Circle, Toronto, Ontario, M5S 1A8, Canada

4 Department of Health Policy, Management and Evaluation, University of Toronto, 155 College Street, Suite 425, Toronto, Ontario, M5T 3M6, Canada

5 CanChild Center for Childhood Disability Research, 1400 Main Street West, Room 408, Hamilton, Ontario, L8S 1C7, Canada

6 School of Social Work, McGill, University of Montreal, 3506 University Street, Montreal, Quebec, H3A 2A7, Canada

7 Faculty of Social Work, University of Calgary, 2500 University Drive NW, Calgary, Alberta, T2N 1N4, Canada

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Citation and License

BMC Pediatrics 2013, 13:10  doi:10.1186/1471-2431-13-10

Published: 19 January 2013

Abstract

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.

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