Abstract
BackgroundPersons 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.MethodsWe 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.ResultsA 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.ConclusionThe 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.Electronic supplementary materialThe online version of this article (doi:10.1186/1472-6963-14-409) contains supplementary material, which is available to authorized users.
Highlights
Persons with neurological conditions and their families face a number of challenges with the provision of health and community-based services
The chronic nature of these conditions makes them amenable to the core principles of the Chronic Care Model (CCM) [5,6,7,8] and the Expanded Chronic Care Model (Expanded CCM) as they emphasize the need for an integrated system that addresses physiological and psychological recovery, and enables individuals to take an active part in managing their own condition [9]
Components of the Chronic Care Model for Neurological Conditions (CCM-NC) Ten themes emerged from our analyses and were organized into four groupings: the socio-economic and political context, community integration, the health system and intersectoral collaboration (See Figure 1)
Summary
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. The aim of the present study was to identify needs and gaps in health and other related community-based services from the perspective of service providers and policy-makers, and 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. The chronic nature of these conditions makes them amenable to the core principles of the Chronic Care Model (CCM) [5,6,7,8] and the Expanded Chronic Care Model (Expanded CCM) as they emphasize the need for an integrated system that addresses physiological and psychological recovery, and enables individuals to take an active part in managing their own condition [9]
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