Mothers’ perspectives on the influences shaping their early experiences with infants at risk of cerebral palsy in India

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Abstract

Background

Accurate diagnosis of cerebral palsy (CP) high-risk status is now possible in infants less than six months corrected age. Parents play a central role in providing nurturing care and implementing early intervention approaches. To design interventions tailored to needs of parents and understand how to improve parental support, this study aimed to understand the influences shaping parent experiences with an infant at high-risk of CP in West Bengal, India.

Methods and procedures

This phenomenological qualitative study was conducted with parents of infants at high-risk of CP in West Bengal, India. Individual in-depth interviews explored experiences with health providers, supports for caregiving and challenges of parenting. Interviews were conducted in English with concurrent translation and analysed using thematic analysis.

Outcomes and results

Main themes included: limited finances and social networks shape decisions and caregiving practices; trust in the formal health care system; views of disability including explanations for their infant’s condition and expectations for the child’s future, and everyday adaptations required to meet infants’ needs.

Conclusions and implications

Low cost models of early intervention may alleviate the financial burden and stress on families. Dependence on health care professionals for care management is a barrier to family-delivered approaches to care.

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.

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