All domains of the environment, suggested by the ICF, have an influence on children’s participation.Evidence regarding the effect of the environment on participation is focused primarily on children with physical disabilities; more studies are needed involving various health conditions and age groups. Practitioners and decision-makers can focus attention on specific aspects of the environment, e.g. attitudinal challenges and social support, in order to foster inclusion and participation-based communities.
Aim
To describe the nature and extent of the literature addressing the medical and its re/habilitative management of cerebral palsy (CP) in India.
Method
Online worldwide scholarly databases, research hosting directories, Indian publishing houses, and grey literature were used to identify papers published between 2005 and 2016. We retrieved 144 English language papers that described the medical and rehabilitative management of Indian children with CP.
Results
Quantitative, qualitative, and mixed research designs are published by a variety of health care professionals in India. Intervention (45%) and observational studies (30%) predominate. Outcomes were categorized using the World Health Organization's International Classification of Functioning, Disability and Health framework, with body structure and function most reported and activity/participation least reported; 57% described its re/habilitation interventions and 43% were medical interventions.
Interpretation
There is a substantial body of CP research in India that focuses on interventions to reduce impairments, with minimal attention given to activities and participation, environmental, and personal factors. Twenty‐six per cent of studies are published in what appear to be ‘predatory journals’. This paper serves as an alert about the presence of ‘predatory journals’ in medicine that may introduce publication bias, which can distort results reported in those studies individually, or from conclusions drawn in reviews that contain those studies.
What this paper adds
Cerebral palsy research in India focuses on interventions to reduce impairment.
Activities, participation, and environmental factors are minimally addressed.
Quantitative studies are more common than qualitative studies.
Many Indian studies are published in journals that are not indexed in worldwide databases of scholarly journals.
Canadian parents experience a more enabling environment and express a more social view of their child's health, suggesting both education on the International Classification of Functioning, Disability and Health principles and services are needed to better enable and empower Indian parents. There remains a need for healthcare professionals and services in both countries to be more family-centered. Implications for rehabilitation To help parents in rehabilitating their children with cerebral palsy (CP), in India, there is a need to (1) incorporate ICF education into medical curricula and clinical practice; (2) increase the availability of skilled healthcare professionals and centers; (3) make infrastructural and policy reforms to make the society more accessible for the disabled children. Education, counseling and awareness about CP might help both groups of parents, society, and HCPs to change their beliefs and attitudes regarding CP and its rehabilitation. Both countries would benefit from user-friendly and transparent policies. This will help parents to become more aware of them and use them in the rehabilitation process.
The life course health development (LCHD) model by Halfon et al. conceptualizes health development occurring through person-environment transactions that enable well-being and participation in desired social roles throughout life, areas that have not received adequate attention in healthcare. The aim of this 'perspectives' paper is to apply the six core tenets of the LCHD model and the concept of health development trajectories to individuals with lifelong neurodevelopmental conditions. We share the perspective that modifiable aspects of the environment often restrict health development; we then advocate that children, beginning at a young age, should engage in 'real-world' experiences that prepare them for current and future social roles. LCHD encourages future planning from the outset, continuity of care between pediatric and adult systems, and coordination of services and supports. We believe LCHD can be transformative in enabling healthy living of individuals with neurodevelopmental conditions.
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