Implementing a Care Coordination Strategy for Children with Medical Complexity in Ontario, Canada: A Process Evaluation

Samantha Quartarone; Jia Lu Lilian Lin; Julia Orkin; Nora Fayed; Simon French; Nathalie Major; Joanna Soscia; Audrey Lim; Sanober Diaz; Myla Moretti; Eyal Cohen

doi:10.5334/ijic.6073

Figures & Tables

Strategic Framework of Complex Care for Kids Ontario (CCKO) strategy.

Complex Care for Kids Ontario (CCKO) Logic Model.

Table 1

Characteristics of key informants, parent caregivers and their children with medical complexity.

CHARACTERISTICS OF KEY INFORMANTS	(N = 38)	%
Gender
Female	33	87
Male	5	13
Age (years)
25–34	5	13
35–44	15	39
45–54	13	34
55–64	5	13
Years of experience in complex care
Less than 6 months	3	8
6 to 11 months	2	5
1 to 2 years	4	11
3 to 4 years	8	21
5 to 10 years	15	39
11 to 20 years	6	16
Role in CCKO strategy
Leadership Table member*	11	29
Nurse practitioner	8	21
Physician	6	16
Allied health professional	4	11
Home and community care coordinator	5	13
Administrative staff	4	11
CHARACTERISTICS OF PARENT CAREGIVERS AND THEIR CHILDREN WITH MEDICAL COMPLEXITY	*(N = 10)*	%
*Of the Parents Gender*
Female	9	90
Male	1	10
Home setting
Urban	5	50
Rural	5	50
Education level
Some post-secondary	2	20
Completed secondary/high school	1	10
Completed post-secondary	7	70
Family structure
Never married- single parent	3	30
Married- dual parent	6	60
Divorced- single parent	1	10
*Of the Parent’s Child with Medical Complexity*
Age in months, median (IQR)	28.5 (99.75)
Gender
Male	5	50
Female	5	50
Primary diagnoses
Neurologic	4	40
Congenital/Genetic defect	3	30
Malignancy	2	20
Miscellaneous/Not elsewhere classified	1	10
# of diagnoses, mean (SD)	5.9 (2.0)
Medications used, mean (SD)	4.7 (2.5)
Technology devices used, mean (SD)	2.4 (1.5)
Hospital outpatient visits, mean (SD)	14 (17.0)

[i] Characteristics of key informants, parent caregivers and their children with medical complexity, n (%) unless otherwise stated.

* Key Informants include clinical and administrative leads of regional hub sites, and ex officio members.

Table 2

Existing and required elements within each subdomain of the geographical, political, socio-cultural, and socio-economic CICI domains.

DOMAINS	SUB-DOMAINS	EXISTING ELEMENTS	REQUIRED ELEMENTS
1.0 Geographical	1.1 Infrastructure 1.2 Access to specialized community services	Utilizing existing physical infrastructure (i.e., children’s rehabilitation institutions)	Availability of specialized clinic space Consistent resourcing and access to specialized services between rural and urban regions Help with workforce challenges outside of major urban centres
2.0 Political	2.1 Project governance 2.2 Cross-regional community of practice 2.3 Resources 2.4 Teamwork	Strong provincial policy foundation and support by the Provincial Council of Maternal and Child Health (PCMCH) Established regions able to share experiences with newer regions Leadership Table facilitates cross-regional collaboration Quarterly Leadership Table meetings Complex Care Kids in Ontario (CCKO) funded as a time-limited pilot project with concurrent evaluation of its effectiveness Partnerships with home and community care services and children’s rehabilitation institutions Effective teamwork between members of the care team	Greater policy-level integration of the health and social care systems that CMC and their families frequently interface Integration between the hospital and community care sector Consistent resourcing and access to specialized services Secure and sufficient funding for clinic, home and community care Additional funding for allied health professionals and multidisciplinary team dedicated to complex care Staff recruitment and retention across all positions
3.0 Socio-cultural	3.1 Ideas and values shared among members 3.2 Relationships/Partnerships 3.3 Coordination/involvement with community	Relationships between care sectors to facilitate information sharing Regular steering committee meetings between sites Knowledge sharing between regions and care settings Strong family involvement during program design and dissemination	Consistent approach to integrating cross-sectoral services Role clarity between community providers and the complex care team Need to understand each team member’s role across the care continuum Greater buy-in from community providers More mental health supports for families Additional video conferencing technologies available at community clinics
4.0 Socio-economic	4.1 Social resources 4.2 Economic resources	Family contributions to clinic expansion and securing clinic funding through advocacy work Leveraging existing public infrastructure to run complex care clinics Disparities between urban centres and remote parts of the province for accessing resources and services Financial burdens and out-of-pocket expenses for families	Additional resources for families to receive therapies not covered through public sector (i.e., behavioural therapies)

Implementing a Care Coordination Strategy for Children with Medical Complexity in Ontario, Canada: A Process Evaluation

Figures & Tables

Figure 1

Figure 2

Table 1

Table 2

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