Nataya Branjerdporn1, Emma Crawford2, Jenny Ziviani3, Roslyn N Boyd4, Katherine Benfer5, Leanne Sakzewski6. 1. The University of Queensland, Queensland Cerebral Palsy and Rehabilitation Research Centre, Faculty of Medicine, Australia. Electronic address: n.branjerdporn@uq.edu.au. 2. The University of Queensland, School of Health and Rehabilitation Sciences, Faculty of Health and Behavioural Sciences, Australia. Electronic address: emma.crawford@uq.edu.au. 3. The University of Queensland, School of Health and Rehabilitation Sciences, Faculty of Health and Behavioural Sciences, Australia. Electronic address: j.ziviani@uq.edu.au. 4. The University of Queensland, Queensland Cerebral Palsy and Rehabilitation Research Centre, Faculty of Medicine, Australia. Electronic address: r.boyd@uq.edu.au. 5. The University of Queensland, Queensland Cerebral Palsy and Rehabilitation Research Centre, Faculty of Medicine, Australia. Electronic address: k.benfer@uq.edu.au. 6. The University of Queensland, Queensland Cerebral Palsy and Rehabilitation Research Centre, Faculty of Medicine, Australia. Electronic address: l.sakzewski1@uq.edu.au.
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.
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.