Mothers’ perspectives on the influences shaping their early experiences with infants at risk of cerebral palsy in India
Section snippets
What this paper adds?
This study provides information on the lived experiences of parents of an infant at high-risk of CP in West Bengal, India. This study provides valuable insight into the prominence of family members to provide nurturing care, health care professionals to make decisions to direct care and the ongoing stress faced due to the costs of care experienced by parents in the Indian context. Understanding these influences provides an opportunity for early models of care to incorporate the training and
Study setting
This study was undertaken at the commencement of a community-based parent-delivered early detection and intervention randomised controlled trial (RCT) for infants at high risk of cerebral palsy (LEAP-CP) delivered in West Bengal, India (Benfer et al., 2018). There were three study sites: a rural community-based non-government rehabilitation organisation, the Asha Bavan Centre (ABC); an urban slum community-based non-government public health organisation, Child in Need Institute (CINI); and a
Results
Participants were 14 mothers (aged 17–34 years, mean 23.9, SD 4.9) with infants at high risk of CP (4.4–14.2 months, mean 9.6, SD 3.1). See Table A2. Only five mothers (35.7 %, n = 5) had completed secondary education and the median level of poverty was moderately well off (n = 5), indicating that families had most basic needs adequately fulfilled. Interviews were 33−72 min in duration. Four main themes arose: 1) limited finances and social networks shape decisions, caregiving practices and
Discussion
To our knowledge this is the first study in India to explore mothers’ perceptions of influences shaping early experiences of caring for an infant at high risk of CP. Given advances in early identification and diagnosis of CP, these qualitative findings can inform the development of early interventions that support and involve mothers of infants at high risk of CP. Elements of the social home environment, financial constraints, decision-making power in CP management, and scarce knowledge and
Conclusion
Providing nurturing care and managing the needs of infants at risk of CP, are the primary experiences of their mothers in West Bengal, India. These parenting experiences are supported by family and community members in the home environment. This provides an opportunity for early models of care to incorporate the training and support of family and community members of the infant with CP. Health care professionals were perceived to be responsible for setting expectations regarding infants’
Funding sources
This work was supported by Research Training Provider Scholarship (N.B.); Australasian Cerebral Palsy Clinical Trials Network Top Up scholarship (N.B.); LSVT Global Student Small Grants for Occupational Therapy Behavioral Treatment Studies with Neurologically Impaired Patients (N.B.); a Cerebral Palsy Alliance Project Grant (PG6916); Queen Elizabeth II Diamond Jubilee Postdoctoral Scholarship, Endeavour (K.B.), Australian Commonwealth Government; National Health and Medical Research Council
CRediT authorship contribution statement
Branjerdporn: Acquisition of data. Branjerdporn, Benfer, Ziviani, Crawford, Sakzewski, Boyd: Analysis and interpretation of data. Branjerdporn, Benfer, Crawford, Sakzewski, Boyd: Drafting of manuscript. Branjerdporn, Benfer, Crawford, Ziviani: Study design and grant writing. Benfer, Sakzewski, Crawford: Study supervision.
Declaration of Competing Interest
The authors report no declarations of interest.
Acknowledgements
We thank all the mothers who generously participated in this study.
References (35)
- et al.
Nurturing care: Promoting early childhood development
The Lancet
(2017) - et al.
Strategies for reducing inequalities and improving developmental outcomes for young children in low-income and middle-income countries
The Lancet
(2011) - et al.
A randomized controlled trial of alternative modes of service provision to young children with cerebral palsy in Bangladesh
Journal of Pediatrics
(2000) - et al.
Single blind randomised controlled trial of GAME (Goals, Activity, Motor Enrichment) in infants at high risk of cerebral palsy
Research in Developmental Disabilities
(2016) - et al.
Neuromotor development in infants with cerebral palsy investigated by the Hammersmith Infant Neurological Examination during the first year of age
European Journal of Paediatric Neurology
(2008) - et al.
Community-based parent-delivered early detection and intervention programme for infants at high risk of cerebral palsy in a low-resource country (Learning through Everyday Activities with Parents (LEAP-CP): protocol for a randomised controlled trial
BMJ Open
(2018) - et al.
A multidimensional approach to measure poverty in rural Bangladesh
Journal of Health, Population, and Nutrition
(2007) - et al.
Using thematic analysis in psychology
Qualitative Research in Psychology
(2006) - et al.
Randomized trial of early developmental intervention on outcomes in children after birth asphyxia in developing countries
Journal of Pediatrics
(2013) - et al.
Prevalence of cerebral palsy in Indian children: A systematic review and meta-analysis
Indian Journal of Pediatrics
(2019)
Global services and support for children with developmental delays and disabilities: Bridging research and policy gaps
PLoS Medicine
Qualitative inquiry and research design: Choosing among five approaches
The impact of hospital-based and community based models of cerebral palsy rehabilitation: a quasi-experimental study
BMC Pediatrics
Caring for a child with Cerebral Palsy: The experience of Zimbabwean mothers
African Journal of Disability
Prechtl’s assessment of general movements: A diagnostic tool for the functional assessment of the young nervous system
Mental Retardation and Developmental Disabilities Research Reviews
The effect of mothering handling training at home on the motor function of children with cerebral palsy: A pilot randomized controlled trial
Journal of Occupational Therapy, Schools & Early Intervention
Model for service delivery for developmental disorders in low-income countries
American Academy of Pediatrics
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