TY - JOUR
T1 - Preliminary Validation of Stigma Measures among Parents of Children Who Are d/Deaf or Hard of Hearing in the United States and Ghana
AU - Saalim, Khalida
AU - Kraemer, John D.
AU - Boafo, Neal
AU - Stockton, Melissa A.
AU - Owusu, Nana Akua V.
AU - Troutman Adams, Elizabeth
AU - Stelmach, Rachel
AU - Birdsey, Bianca
AU - Alberg, Joni
AU - Vormawor, Richard
AU - Mankattah, Emmanuel
AU - Akrong, Ransford
AU - Boateng, Kwaku
AU - Nyblade, Laura
N1 - Funding Information:
This work was supported in part from a central fund for the Lancet Commission on Hearing Loss whose contributors included RTI International in Research Triangle Park, NC, and the Provost\u2019s Office, the School of Medicine, the Chancellor for Health Affairs, the Pratt School of Engineering, the Duke Global Health Institute, and the Department of Head and Neck Surgery and Communication Sciences at Duke University in Durham, NC. In addition, further support for the present work was kindly and generously provided by RTI International and by the Department of Head and Neck Surgery and Communication Sciences at Duke. Finally, other aspects of the Lancet Commission were supported financially or with in-kind contributions by the National Institute on Deafness and Other Communication Disorders in Bethesda, MD; the National Institute on Aging in Bethesda, MD; the Fondation Pour L\u2019Audition in Paris, France; the Duke Clinical & Translational Science Institute; and the World Health Organization in Geneva, Switzerland.
Funding Information:
The authors are grateful for the survey administrators and participants who contributed to the process for developing, refining, and validating the scales described in this manuscript. We particularly thank the participants in the modified Delphi process for their detailed insights, including participants from the Global Coalition of Parents of Children who are Deaf or Hard of Hearing (GPODHH). Finally, we thank the members of the Lancet Commission on Hearing Loss Stigma subworking Group for their efforts supporting the work presented in this special supplement. This work was supported in part from a central fund for the Lancet Commission on Hearing Loss whose contributors included RTI International in Research Triangle Park, NC, and the Provost\u2019s Office, the School of Medicine, the Chancellor for Health Affairs, the Pratt School of Engineering, the Duke Global Health Institute, and the Department of Head and Neck Surgery and Communication Sciences at Duke University in Durham, NC. In addition, further support for the present work was kindly and generously provided by RTI International and by the Department of Head and Neck Surgery and Communication Sciences at Duke. Finally, other aspects of the Lancet Commission were supported financially or with in-kind contributions by the National Institute on Deafness and Other Communication Disorders in Bethesda, MD; the National Institute on Aging in Bethesda, MD; the Fondation Pour L\u2019Audition in Paris, France; the Duke Clinical & Translational Science Institute; and the World Health Organization in Geneva, Switzerland. The data that support the findings of this study are openly available upon request to RTI, International. Due to the nature of the data, it is publicly available after entering into a data sharing agreement with RTI, International.
Publisher Copyright:
Copyright © 2024 Wolters Kluwer Health, Inc. All rights reserved.
PY - 2024/9/1
Y1 - 2024/9/1
N2 - Objectives: Parents are integral to the development and overall well-being of their child. Previous research has studied the emotional effects parenting experiences have on parents. However, parents caring for children with disabilities have unique parenting experiences, filled with both victories and challenges. Parenting a child with disabilities can bring additional responsibilities as parents respond to their child's special needs. Specifically, parents of children who are d/Deaf or hard of hearing (d/DHH) are required to make ongoing life-changing decisions about their child's life, including mode of communication, medical care, and education. Across the world, many adults who are d/DHH experience stigma. However, less is known about the stigma faced by children who are d/DHH and their parents. Measuring the nature and magnitude of stigma-affecting parents of children who are d/DHH could offer insights into how to additionally support these parents. Nonetheless, there is a gap in validated scales to measure stigma among parents of children who are d/DHH. In response, we developed and preliminarily validated five measures of stigma among parents of children who are d/DHH. Design: Measures were developed through a mixed-method process: (1) a scoping literature review, (2) a modified Delphi process consisting of two group discussions (n = 3, n = 4) and two individual discussions with parents of children who are d/DHH from high-income countries (HICs) and low- and middle-income countries (LMICs), (3) cognitive interviews with parents of children who are d/DHH in the United States (U.S.) (n = 5) and Ghana (n = 5), and (4) a pretest of the survey in the U.S. (n = 28) and Ghana (n = 30). Modifications to the measures were made after each stage. This article focuses on evaluating the psychometric performance of the developed measures. Parents were recruited in the U.S. (n = 100) and Ghana (n = 173). Convenience sampling was used in both countries. In Ghana, survey administration was in-person with trained interviewers collecting data on tablets. In the U.S. data were collected online through self-administered surveys. Results: The final five scales measured: (1) parental observation of stigma their child experiences (seven items), (2) parental perceptions of stigma toward their child (eight items), (3) parental secondary experienced stigma (eight items), (4) perceived parental secondary stigma (five items), and (5) parental internalized stigma (seven items). All scales performed strongly and similarly across both country samples. The scales had ordinal αs ranging from 0.864 to 0.960, indicating strong reliability. Conclusions: This study provides a set of preliminarily validated stigma measures to capture the experience of parents of children who are d/DHH. Measuring stigma among parents is critical to understanding parental mental health, as parental well-being affects the health and development of their child. Furthermore, measuring observed stigma by parents can allow the researcher to gain an understanding of the stigma experienced by children who are d/DHH that they may not be able to communicate. Further studies testing these measures across other countries and with more diverse samples are needed.
AB - Objectives: Parents are integral to the development and overall well-being of their child. Previous research has studied the emotional effects parenting experiences have on parents. However, parents caring for children with disabilities have unique parenting experiences, filled with both victories and challenges. Parenting a child with disabilities can bring additional responsibilities as parents respond to their child's special needs. Specifically, parents of children who are d/Deaf or hard of hearing (d/DHH) are required to make ongoing life-changing decisions about their child's life, including mode of communication, medical care, and education. Across the world, many adults who are d/DHH experience stigma. However, less is known about the stigma faced by children who are d/DHH and their parents. Measuring the nature and magnitude of stigma-affecting parents of children who are d/DHH could offer insights into how to additionally support these parents. Nonetheless, there is a gap in validated scales to measure stigma among parents of children who are d/DHH. In response, we developed and preliminarily validated five measures of stigma among parents of children who are d/DHH. Design: Measures were developed through a mixed-method process: (1) a scoping literature review, (2) a modified Delphi process consisting of two group discussions (n = 3, n = 4) and two individual discussions with parents of children who are d/DHH from high-income countries (HICs) and low- and middle-income countries (LMICs), (3) cognitive interviews with parents of children who are d/DHH in the United States (U.S.) (n = 5) and Ghana (n = 5), and (4) a pretest of the survey in the U.S. (n = 28) and Ghana (n = 30). Modifications to the measures were made after each stage. This article focuses on evaluating the psychometric performance of the developed measures. Parents were recruited in the U.S. (n = 100) and Ghana (n = 173). Convenience sampling was used in both countries. In Ghana, survey administration was in-person with trained interviewers collecting data on tablets. In the U.S. data were collected online through self-administered surveys. Results: The final five scales measured: (1) parental observation of stigma their child experiences (seven items), (2) parental perceptions of stigma toward their child (eight items), (3) parental secondary experienced stigma (eight items), (4) perceived parental secondary stigma (five items), and (5) parental internalized stigma (seven items). All scales performed strongly and similarly across both country samples. The scales had ordinal αs ranging from 0.864 to 0.960, indicating strong reliability. Conclusions: This study provides a set of preliminarily validated stigma measures to capture the experience of parents of children who are d/DHH. Measuring stigma among parents is critical to understanding parental mental health, as parental well-being affects the health and development of their child. Furthermore, measuring observed stigma by parents can allow the researcher to gain an understanding of the stigma experienced by children who are d/DHH that they may not be able to communicate. Further studies testing these measures across other countries and with more diverse samples are needed.
KW - Ghana
KW - Parenting
KW - Parents
KW - Stigma
KW - Surveys and Questionnaires
KW - United States
KW - Validity
UR - http://www.scopus.com/inward/record.url?scp=85204512094&partnerID=8YFLogxK
U2 - 10.1097/AUD.0000000000001471
DO - 10.1097/AUD.0000000000001471
M3 - Article
C2 - 39298627
AN - SCOPUS:85204512094
VL - 45
SP - 26S-34S
JO - Ear and Hearing
JF - Ear and Hearing
SN - 0196-0202
IS - Supplement 1
ER -