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ERIC Number: ED664197
Record Type: Non-Journal
Publication Date: 2024
Pages: 163
Abstractor: As Provided
ISBN: 979-8-3427-4693-9
ISSN: N/A
EISSN: N/A
Lived Experiences of Caregivers with a Visually Impaired Child: A Phenomenological Study
Marion A. Clough
ProQuest LLC, Ph.D. Dissertation, Fielding Graduate University
Visual impairment affects an estimated 19 million children under 15 globally, with 12 million of them having vision issues that could be diagnosed and corrected, leaving 7 million children under 15 with significant visual impairments (WHO, 2021). The impact of receiving a visual impairment diagnosis can affect many aspects of a caregiver's life and present psychological, amongst other, challenges to the family. The social scientific literature provides robust quantitative research in which numerous variables, such as the factors associated with the anxiety, psychological well-being, and self-esteem of caregivers are operationalized and analyzed (Sola-Carmona, J., Lopez-Liria, R., Padilla-Gongora, D., Daza, M. T., Aguilar-Parra, J. M., & Salido-Campos, M. A., 2016). Quality-of-life amongst caregivers of visually impaired children is another concept frequented in the literature. Indicators such as physical symptoms, stress, anxiety, presence of a social network, level of diagnostic understanding, and coping strategies were amongst the variables investigated toward gaining an understanding of the caregiver's quality-of-life. The social scientific empirical literature clearly denotes the complexities of caregivers who are raising a child with a visual impairment through exploring factors that affect the well-being of caregivers, quality of life indicators, and coping strategies. However, they may not always reflect the complexity of the caregivers' lived experiences, nor the process transpired in arriving at this outcome. There is limited qualitative research whereby caregivers of visually impaired children have shared their experiences, in their own words, of raising a child with a visual impairment. The caregivers of visually impaired children are an infrequently heard population which seem to be marginalized in comparison to other disabilities. This represents a significant gap in the literature given that caregivers are the most instrumental informants toward understanding the challenges, the adaptations, and the developmental trajectory of the child. A qualitative study whereby the caregivers are given an ample platform to share their experiences would be an addition to the literature through allowing a deeper understanding of these phenomena. Using a narrative approach to the interviews, and an interpretative phenomenological analysis, an understanding of raising a visually impaired child, through the ones who are navigating these experiences, was explored in this study. Through a semi-structured interview, 10 mothers shared their lived experiences of raising a visually impaired child. Five themes emerged from the narratives: (a) diagnosis, (b) resources and education pathways, (c) sense of agency, (d) the hero's journey, and (e) advice. This study was undertaken with the recognition of the invaluable insights gained from caregivers' lived experiences and the necessity for their voices to be heard. Through the caregivers' detailed sharing of their journey, the challenges they faced, and the insights they gained, research implications for medical professionals, educators, society, and other caregivers embarking on similar journeys emerged. [The dissertation citations contained here are published with the permission of ProQuest LLC. Further reproduction is prohibited without permission. Copies of dissertations may be obtained by Telephone (800) 1-800-521-0600. Web page: http://bibliotheek.ehb.be:2222/en-US/products/dissertations/individuals.shtml.]
ProQuest LLC. 789 East Eisenhower Parkway, P.O. Box 1346, Ann Arbor, MI 48106. Tel: 800-521-0600; Web site: http://bibliotheek.ehb.be:2222/en-US/products/dissertations/individuals.shtml
Publication Type: Dissertations/Theses - Doctoral Dissertations
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Grant or Contract Numbers: N/A