Perceived stigma and social relationships: Deaf and hard of hearing adolescent and parent perspectives

Abstract

Background: A quality of life (QoL) study is a multidimensional approach to understanding a person’s assessment of their position in life. The Youth Quality of Life Instrument – Deafness and Hard of Hearing (YQoL-DHH) module measures adolescent QoL including in the perceived stigma and social relationship domains. Few studies have compared parent-report and youth-report results regarding QoL and no prior studies have focused specifically on perceived stigma and social relationships. Methods: A multisite observational study titled “Hearing Loss and Quality of Life of Children and Youth” was conducted from 2007 to 2010. This original study, upon which the current study was based, was completed in two phases: (1) Qualitative interviews and focus groups to inform development of the YQoL-DHH module and (2) Quantitative measurement property testing through a self-administered questionnaire. The study population included both adolescents and parents: DHH youth ages 11-18 (n=230) and the parents/guardians of DHH children ages 5-10 (n=271). For the current study, a secondary data analysis was conducted using both phase 1 (qualitative) and phase 2 (quantitative) data. Qualitative data from the first phase were assessed for identification of primary themes. Quantitative data from the second phase were analyzed using simple and multiple linear regression. The models controlled for race/ethnicity and sex. Results: The phase one qualitative analysis identified five primary themes: (1) Device-related stigma, (2) Assumptions about ability, (3) Sport-related barriers to social relationships, (4) Deaf vs. Hearing friends, and (5) Language barriers. The phase two quantitative results identified four primary findings: (1) Youth reported: assistive hearing devices were associated with higher stigma (r=0.93, p=0.03), (2) Parent reported: using signed languages was moderately associated with higher stigma (r=0.42, p=0.06), (3) Parent reported: A greater degree of hearing loss was associated with low social QoL (r=-0.20, p=0.05), (4) Use of signed languages was reported by youth as associated with low social QoL outside of school (r=-0.79, r=0.04) and reported by parents as a factor associated with high social QoL outside of school (r=0.47, p=0.05). In general, the parents reported higher negative stigma and lower social QoL compared to the youth report. Despite this discrepancy, the youth qualitative interviews showed indications of both the stigma and low social QoL found in the parent results. Conclusions: Results from this study indicate that assistive hearing devices, signed languages, and high degrees of hearing loss can negatively impact DHH youth QoL. These results can assist in home and school-based program interventions for DHH children and adolescents to reduce stigma and improve the quality of their social relationships.