Treatment and re/habilitation of children with cerebral palsy in India: a scoping review

Abstract

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.

New Ethical Issues in Cerebral Palsy

“…To ensure relevance, future research must involve people with lived experience of cerebral palsy (patients, parents, siblings) when conceiving studies, collecting results, and analyzing findings. Individualized goal setting and realization, well-being, and social determinants are particularly important research priorities, and so are the lifelong and global perspective, not overlooking areas that have been identified as requiring specific attention in low-and middleincome countries, such as ICF domains of activity, participation, and environmental factors, interventions aiming to modify the environment and increasing participation (39). There is a great need for sound qualitative research exploring the perspectives of people with cerebral palsy and for the evaluation of knowledge translation strategies.…”

Watchwords for management of developmental disabilities in developing countries

“…Although there is increasing clinical research in cerebral palsy in India, it remains focused on interventions to reduce impairment; whereas activities, participation, and environmental factors are minimally addressed. 2 Similar to the 'F-words' (function, family, fitness, fun, friends, and future) which have been suggested as a universal approach for childhood disability, 3 seven 'watchwords' are proposed to summarize the actions we need to take. These watchwords are: access, empowerment, inclusion, leadership, research, surveillance, and workforce.'Access' to health care is a primary issue.…”

Identifying neurodisability research priorities in resource poor regions

“…Jindal et al . present a scoping review setting out the nature and extent of cerebral palsy research in India, using the International Classification of Functioning, Disability and Health (ICF) domains.…”