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The authors declare that they have no competing interests.
SBJ conceived of the study, acquired the funding, supervised the research group, conducted the data analysis and drafted the manuscript. SJTG participated in the conception and design of the study, data analysis and interpretation and drafting the manuscript. TB and MK participated in coordination, acquisition of data, data analysis and interpretation and drafting manuscript. SM participated in the conception and design of the study, data analysis and interpretation and revising manuscript critically for important intellectual content. JC, JV, TP participated in the design, acquisition of data, data analysis and interpretation and revising manuscript critically for important intellectual content. MV, CM, KBP, RR participated in the design, data analysis and interpretation and revising manuscript for important intellectual content. All authors read and approved the final manuscript.
Persons with neurological conditions and their families face a number of challenges with the provision of health and community-based services. The purpose of this study was to understand the existing health and community service needs and gaps in care and to use this information to develop a model to specify factors and processes that may improve the quality of care and health and well-being for persons with neurological conditions.
We conducted semi-structured interviews with health care professionals, community-based non-health care professionals working with individuals with neurological conditions, and policy makers –from the Ministries of Health, Community and Social Services, Transportation and Education– across Canada. We used a purposive sampling and snowballing approach to obtain maximum variation across professions, sector and geography (provinces and territories, rural and urban). Data analysis was an iterative, constant comparative process involving descriptive and interpretive analyses and was initially guided by the components of the Expanded Chronic Care Model.
A total of 180 individuals completed the interviews: 39% (n = 70) health care professionals, 47% (n = 85) community-based non-health care professionals, and 14% (n = 25) policy makers. Based on the data we developed the Chronic Care Model for Neurological Conditions (CCM-NC). The major needs/gaps are represented by the following themes: acceptance and openness to neurological conditions, evidence informed policy, investments and funding, supported transitions, caregiver support, and life enhancing resources (education, employment, housing and transportation), knowledge and awareness of neurological conditions and availability and access to health services. The model maintains that intersectoral collaboration across the health system, community and policy components is needed. It recognizes that attitudes, policies, enhanced community integration and health system changes are needed to develop activated patients and families, proactive service delivery teams, a person-centred health system and healthy public policy for persons with neurological conditions.
The CCM-NC will generate debate and discussion about the actions needed in each of the model components to enable people with neurological conditions to sustain healthier lives. Next steps include validating the model with persons with neurological conditions, in and outside of the Canadian context and developing and evaluating interventions to test the model.