Impact of a family-centred early intervention programme in South India on caregivers of children with developmental delays

References

• Global Research on Developmental Disabilities Collaborators. Developmental disabilities among children younger than 5 years in 195 countries and territories, 1990–2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Glob Health. 2018;6:e1100–e1121.
   PubMed Web of Science ®Google Scholar
• UNICEF. The State of the World’s Children 2013: children with disabilities. New York NY: UNICEF; May 2013. https://data.unicef.org/resources/the-state-of-the-worlds-children-2013-children-with-disabilities/
   Google Scholar
• Chiluba BC, Moyo G. Caring for a cerebral palsy child: a caregivers perspective at the University Teaching Hospital, Zambia. BMC Res Notes. 2017;10(1):724.
   PubMedGoogle Scholar
• Darsana GM, Suresh V. Prevalence of caregiver burden of children with disabilities. IJIFR. 2017;4(8):7238–7249.
   Google Scholar
• McNally A, Mannan H. Perceptions of caring for children with disabilities: experiences from Moshi, Tanzania. African J Disability. 2013;2(1):21.
   PubMedGoogle Scholar
• Zuurmond MA, Mahmud I, Polack S, et al. Understanding the lives of caregivers of children with cerebral palsy in rural Bangladesh: use of mixed methods. DCID. 2015;26(2):5–21.
   Google Scholar
• Thuy NT, Berry HL. Social capital and mental health among mothers in Vietnam who have children with disabilities. Global Health Action. 2013;6(1):18886–18812.
   PubMed Web of Science ®Google Scholar
• Gona JK, Mung'ala-Odera V, Newton CR, et al. Caring for children with disabilities in Kilifi, Kenya: What is the carer's experience? Child Care Health Dev. 2011;37(2):175–183.
   PubMed Web of Science ®Google Scholar
• Deepthi NS, Krishnamurthy A. Mental health and quality of life of caregivers of individuals with cerebral palsy in a community based rehabilitation programme in Rural Karnataka. DCIDJ. 2011;22(3):29–38.
   Google Scholar
• United Nations. Convention on the Rights of the Child. [Internet]. Geneva: Committee on the Rights of the Child; 2007. February. https://www.right-to-education.org/sites/right-to-education.org/files/resource-attachments/CRC_General_Comment_9_en.pdf
   Google Scholar
• Thrush A, Hyder AA, Hyder A. The neglected burden of caregiving in low- and middle-income countries. Disabil Health J. 2014;7(3):262–272.
   PubMed Web of Science ®Google Scholar
• Isa SNI, Ishak I, Ab Rahman A, et al. Health and quality of life among the caregivers of children with disabilities: A review of literature. Asian J Psychiatr. 2016;23:71–77.
   PubMed Web of Science ®Google Scholar
• Xiong C, Biscardi M, Nalder E, et al. Sex and gender differences in caregiving burden experienced by family caregivers of persons with dementia: a systematic review protocol. BMJ Open. 2018;8(8):e022779.
   PubMed Web of Science ®Google Scholar
• Zarit SH, Todd PA, Zarit JM. Subjective burden of husbands and wives as caregivers: a longitudinal study. Gerontologist. 1986;26(3):260–266.
   PubMed Web of Science ®Google Scholar
• Vadivelan K, Sekar R, Sruthi SS, et al. Burden of caregivers of children with cerebral palsy: an intersectional analysis of gender, poverty, stigma, and public policy. BMC Public Health. 2020;20(1):645.
   PubMed Web of Science ®Google Scholar
• Nimbalkar S, Raithatha S, Shah R, et al. A qualitative study of psychosocial problems among parents of children with cerebral palsy attending two tertiary care hospitals in western India. ISRN Fam Med [Internet]. 2014;2014:1–6.
   Google Scholar
• Edwardraj S, Mumtaj K, Prasad JH, et al. Perceptions about intellectual disability: a qualitative study from Vellore, South India. J Intel Disability Research [Internet]. 2010;54(8):736–748.
   PubMedGoogle Scholar
• Singh P, Subharati G, Subhrangshu N. Subjective burden and depression in mothers of children with autism spectrum disorder in india: moderating effect of social support. J Autism Dev Disorders. 2017;47(10):3097–3111.
   PubMed Web of Science ®Google Scholar
• Banga G, Ghosh S. The impact of affiliate stigma on the psychological well-being of mothers of children with specific learning disabilities in India: The mediating role of subjective burden. J Appl Res Intellect Disabil. 2017;30(5):958–969.
   PubMed Web of Science ®Google Scholar
• John A. Stress among mothers of children with intellectual disabilities in urban india: role of gender and maternal coping. J Appl. Res. Intellect. Disabil. 2012;25(4):372–382.
   PubMed Web of Science ®Google Scholar
• Prakash V, Patel AM, Hariohm K, et al. Higher levels of caregiver strain perceived by Indian mothers of children and young adults with cerebral palsy who have limited self-mobility. Phys Occup Therapy Pediatrics. 2017;37(1):64–73.
   PubMed Web of Science ®Google Scholar
• Palisano R, Almarsi N, Chiarello L, et al. Family needs of parents of children and youth with cerebral palsy. Child Care Health Dev. 2010;36(1):85–92.
   PubMed Web of Science ®Google Scholar
• Dias E. Rapid response RE: cerebral palsy in India. BMJ. 2017;356:j462.
   PubMedGoogle Scholar
• Adithyan GS, Sivakami M, Jacob J. Positive and negative impacts on caregivers of children with intellectual disability in India. DCIDJ. 2017;28(2):74–94.
   Google Scholar
• Shevell M, Oskoui M, Wood E, et al. Family-centred health care for children with cerebral palsy. Dev Med Child Neurol. 2019;61(1):62–68.
   PubMed Web of Science ®Google Scholar
• King S, Teplicky R, King G, et al. Family-centered service for children with cerebral palsy and their families: a review of the literature. Seminars Pediatr Neurol. 2004;11(1):78–86.
   PubMedGoogle Scholar
• Ziegler SA, Hadders-Algra M. Coaching approaches in early intervention and paediatric rehabilitation. Dev Med Child Neurol. 2020;62:569–574.
   PubMed Web of Science ®Google Scholar
• Zuurmond M, O’Banion D, Gladstone M, et al. Evaluating the impact of a community-based parent training programme for children with cerebral palsy in Ghana. PLoS One. 2018;13(9):e0202096.
   PubMed Web of Science ®Google Scholar
• Taderera C, Hall H. Challenges faced by parents of children with learning disabilities in Opuwo, Namibia. African J Disability. 2017;6:1–10.
   Web of Science ®Google Scholar
• Mirza I, Tareen A, Davidson LL, et al. Community management of intellectual disabilities in Pakistan: a mixed methods study. J Intel Disability Res. 2009;53(6):559–570.
   PubMedGoogle Scholar
• Mabmud SM. Cohort Design. In: Salkind NJ, editor. Encyclopedia of research design. Thousand Oaks: SAGE Publications, Inc. 2010. p.190–193.
   Google Scholar
• Nair M, Nair G, George B, et al. Development and validation of trivandrum development screening chart for children aged 0-6 years [TDSC 0-6]. Indian J Pediatr. 2013;80(S2):S248–S255.
   PubMedGoogle Scholar
• De Costa A, D’Souza N, Krishnan S, et al. Community Based Trials and Informed Consent in Rural India. J Med Ethics. 2004;30:318–323.
   PubMed Web of Science ®Google Scholar
• Koren PE, DeChillo N, Friesen BJ. Measuring empowerment in families whose children have emotional disabilities: A brief questionnaire. Rehab Psych. 1992;37(4):305–321.
   Web of Science ®Google Scholar
• Akey TM, Marquis JG, Ross ME. Validation of scores on the psychological empowerment scale: a measure of empowerment for parents of children with a disability. Educational Psych Measure. 2000;60(3):419–438.
   Web of Science ®Google Scholar
• Singh NN, Curtis JW, Ellis CR, et al. Psychometric analysis of the family empowerment scale. J Emotional Behav Disorders. 1995;3(2):85–91.
   Web of Science ®Google Scholar
• Thornton M, Travis SS. Analysis of the reliability of the modified caregiver strain index. J Geront. 2003;58(2):S127–S132.
   Google Scholar
• Onega L. Helping those who help others: the modified caregiver strain index. Am J Nurs. 2008;108(9):62–69.
   PubMed Web of Science ®Google Scholar
• Palisano RJ, Rosenbaum PL, Walter SD, et al. Development and reliability of a system to classify gross motor function in children with cerebral palsy. Dev Med Child Neurol. 1997;39(4):214–223.
   PubMed Web of Science ®Google Scholar
• Palisano RJ, Hanna SE, Rosenbaum PL, et al. Validation of a model of gross motor function for children with cerebral palsy. Phys Ther. 2000;80(10):974–985.
   PubMed Web of Science ®Google Scholar
• Wood EP, Rosenbaum PL. The gross motor function classification system for cerebral palsy: a study of reliability and stability over time. Dev Med Child Neurol. 2000;42(5):292–296.
   PubMed Web of Science ®Google Scholar
• Information and Technology Act [Internet]. India: Ministry of Electronics & Information Technology. 2020 [cited Apr 13]. Available from https://meity.gov.in/content/information-technology-act
   Google Scholar
• King G, Chiarello L. Family-centered care for children with cerebral palsy: conceptual and practical considerations to advance care and practice. J Child Neurol. 2014;29(8):1046–1054.
   PubMed Web of Science ®Google Scholar
• Fingerhut PE, Piro J, Sutton A, et al. Family-centered principles implemented in home-based, clinic-based, and school-based pediatric settings. Am J Occup Ther. 2013;67(2):228–235.
   PubMed Web of Science ®Google Scholar
• Ketelaar M, Vermeer A, Helders PJM, et al. Parental participation in intervention programs for children with cerebral palsy: a review of research. Top Early Child Spec Educ. 1998;18(2):108–117.
   Web of Science ®Google Scholar
• Ferre CL, Gordon AM. Coaction of individual and environmental factors: a review of intensive therapy paradigms for children with unilateral spastic cerebral palsy. Dev Med Child Neurol. 2017;59(11):1139–1145.
   PubMed Web of Science ®Google Scholar