Unmet and under-met needs among Indian parents of children with neurological disorders

Chittem, Mahati and Kelada, Lauren and Muppavaram, Nagesh and et al, . (2022) Unmet and under-met needs among Indian parents of children with neurological disorders. Journal of Pediatric Nursing, 63. e1-e9. ISSN 0882-5963

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Abstract

Background: Parents of children with neurological disorders commonly report having unmet needs related to their child's care. Mixed methods research is needed with parents of children with neurological disorders in India in order to: 1) quantify which needs are unmet and under-met, and 2) qualitatively explore how parents perceive their unmet and under-met needs. Methods: This concurrent mixed-methods study used a convergence model of triangulation design. Parents of children with neurological disorders receiving treatment in a children's hospital in Hyderabad, India completed questionnaires (n = 205) on unmet/under-met needs. Twenty-five of these parents then completed in-depth interviews exploring experiential aspects of unmet needs. Results: Quantitative analysis suggested that education about the child's illness and medical needs were the most frequent unmet needs. Parents needed their child's condition explained to them (91.7%) and greater continuity of their child's care (85.4%). Qualitative analysis suggested that parents reported struggling to find a specialist who was knowledgeable about their child's condition. Though parents living in rural areas quantitatively reported fewer unmet needs (child's medical care, care coordination, and communication) than parents living in the city (B = 0.92 [95%CI = 0.64,1.20] for medical care needs), the qualitative data showed this may be due to lower expectations from the health system. Conclusion: Parents of children with neurological disorders in India frequently report unmet and under-met needs. Practice implications: Community-based interventions coupled with training nurses on information provision could help bridge the gap between what is offered by hospital systems, and what is needed by parents, in terms of information and support. © 2021 Elsevier Inc.

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IITH Creators:
IITH CreatorsORCiD
Chittem, Mahatihttps://orcid.org/0000-0002-8978-3544
Item Type: Article
Additional Information: Prof Wakefield is supported by the National Health and Medical Research Council of Australia ( APP1143767 ). The study was supported by the Indian Institute of Technology Hyderabad's start-up grant.
Uncontrolled Keywords: Education; India; Medical care; Mixed methods; Under-met needs; Unmet needs
Subjects: Others > Medicine
Arts > Liberal arts
Divisions: Department of Liberal Arts
Depositing User: . LibTrainee 2021
Date Deposited: 18 Jul 2022 12:10
Last Modified: 18 Jul 2022 12:10
URI: http://raiithold.iith.ac.in/id/eprint/9618
Publisher URL: http://doi.org/10.1016/j.pedn.2021.11.015
OA policy: https://v2.sherpa.ac.uk/id/publication/4786
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