Priority research areas for the care of children/youth with complex care needs in New Brunswick

The global incidence of children/youth presenting with complex care needs (CNN) has been increasing. Given their multidimensional care needs and frequent transitions between providers and settings, they often experience discontinuity or gaps in care. Patients and their families are increasingly being considered as active partners in healthcare and it is becoming common to explore patient priorities when looking to conduct research around healthcare delivery and improvement. The objective of this study was to explore priority research areas related to improving the delivery of health services for children/youth with CCN. This study captured the experiences and recommendations of caregivers to help ensure that future research addresses issues relevant to those receiving care. We used a cross-sectional qualitative descriptive design. Data was collected using semi-structured interviews and self-report surveys, and this data was analyzed using qualitative content analysis. Data was collected from 37 caregivers of children/youth with CCN across NB. The top five priority research areas identified in the data were: (1) accessing appropriate services and resources; (2) care continuity and coordination; (3) transitional age youth; (4) school and daycare system barriers; and (5) caregiver support. The current study highlights the multifaceted nature of caring for children with complex care needs. This list of the top health service delivery research priority areas for caregivers of children/youth with CCN in NB will provide direction for future provincial, national, and international health research projects that are based on the most important needs of the population.

1. Health Service Delivery Research
Priorities for Individuals with
Complex Care Needs in NB
Dr. Lillian MacNeill and Sarah Bridges

2. Project Team
Principal Investigators:
•Dr. Shelley Doucet, UNB
•Dr. Alison Luke, UNB
Research Assistants:
•Grailing Anthonisen, UNB
•Julia Besner, UNB
Project Coordinator:
•Dr. Lillian MacNeill, UNB
MSSU Support:
•Sarah Bridges, HHN
•Samantha Fowler, HHN
CIHR Catalyst Grant: Patient Oriented Research

3. Background

4. Children and Youth
with Complex Care
Needs

5. Older Adults with
Complex Care
Needs

6. Current Study
Identify the health service
delivery priorities for individuals
with complex care needs (CCN)
and their caregivers in NB.

7. Method

8. Sample
Caregivers of Children/Youth (N = 37)
•Caregivers: 24-54 years old
•Caregivers: 95% female
•Children: 2-23 years old
•Children: 60% male
Caregivers of Older Adults (N = 35)
•Caregivers: 36-87 years old
•Caregivers: 75% female
•Older adults: 65-91 years old
•Older adults: 67% female

9. Children/Youth:
Top 5 Priority Areas
Access to appropriate healthcare supports
and services
Care continuity and coordination
School/daycare system barriers
Transition to adulthood
Caregiver support

10. Older Adults:
Top 5 Priority Areas
Access to appropriate healthcare supports
and services
Care navigation and coordination
Homecare issues and barriers
Impact of COVID-19 on care
Caregiver support

11. Implications

12. Thank You
Contact: Lillian MacNeill
[email protected]