Comprehensive Needs Assessment to Ensure Appropriate Rehabilitation Training for Community-Based Workers and Caregivers in India

Abstract

Importance: Rehabilitation researchers and occupational therapy practitioners frequently conduct projects that involve the provision of services or the dissemination of knowledge in low- and middle-income countries (LMICs); however, the needs assessment process underlying these transcultural projects is often underreported. Objective: To identify a comprehensive set of feeding-related training needs that reflect the culture, resources, and service delivery practices in the West Bengal region of India and that will be used to develop video-based training modules that are contextually relevant and support decentralized training of community-based rehabilitation workers and caregivers of children with cerebral palsy (CP). Design: Mixed methods design using focus groups and observations. Setting: Community setting in rural, suburban, and urban locations in West Bengal, India. Participants: Caregivers of children with CP and community-based rehabilitation workers with experience working with children with CP. Outcomes and Measures: Focus groups and in-home mealtime observations. Results: Several findings suggest training priorities that were not anticipated. Caregivers commonly fed children by means of hand feeding while sitting on the floor. Children were fed a limited variation of food consistencies, often in positions of neck hyperextension. Water was frequently used to stimulate swallowing. Caregivers struggled to help children with oral hygiene practices after meals. Conclusions and Relevance: A thorough needs assessment yielded insights that can favorably alter the trajectory of transcultural service and research projects. For occupational therapists who provide advice on practice, continuing education, or research in a transcultural project, the findings underscore the value of engaging local stakeholders and using firsthand observation. What This Article Adds: The rigorous, multistakeholder needs assessment process described herein can serve as a road map for researchers and occupational therapy practitioners conducting transcultural projects in LMICs.

F‐words and early intervention ingredients for non‐ambulant children with cerebral palsy: A scoping review

“…The findings support this as a practice desired by families 34–39 and with potential to promote relevant changes in several areas 40 . However, often families are not sufficiently informed or cannot understand the information they are given 34,41,42 . Coaching 24,25,28,43 and educational programmes 44 emerged as low‐cost strategies to empower and engage the family as the centre of the process of care.…”

“…Several studies addressed this F‐word (family) by means of qualitative or mixed‐method study designs 39,41,50–55 because these may be best able to capture personal factors that are difficult to measure with standardized tools. The financial strain of caring for a child with complex needs may result in decisions not to use other services for parent health, recreation, and educational needs within the family, 54 which may place a high burden on the family in the long term.…”

“…Mothers reported that their non‐ambulant children were viewed as a punishment for their past behaviours, with some mothers reportedly shunned from their villages 49 . Other families experienced a complete lack of medical care, therapy, resources, and even basic equipment such as wheelchairs and feeding tubes 41,97 . Non‐ambulant children were denied access to schools, playgrounds, restaurants, and other community settings because of lack of appropriate and transportable assistive technology 97 .…”

F‐words e ingredientes de las intervenciones tempranas dirigidas a niños no ambulantes con parálisis cerebral: Una revisión exploratoria

“…Los hallazgos apoyan que se trata de una práctica deseada por las familias 34–39 y con potencial para promover cambios relevantes en varias áreas 40 . Sin embargo, a menudo las familias no están suficientemente informadas o no pueden entender la información que se les ofrece 34,41,42 . El coaching 24,25,28,43 y los programas educativos 44 surgieron como estrategias de bajo coste para empoderar e involucrar a la familia como centro del proceso de atención.…”

“…Varios estudios abordaron esta F‐word (familia) mediante diseños de estudio cualitativos o de métodos mixtos 39,41,50–55 ya que estos pueden ser los más adecuados para capturar factores personales que son difíciles de medir con herramientas estandarizadas. La presión económica que supone el cuidado de un niño con necesidades complejas puede dar lugar a decisiones de no utilizar otros servicios para las necesidades sanitarias, recreativas y educativas de los padres dentro de la familia, 54 lo que puede suponer una gran carga para la familia a largo plazo.…”