Perceptions of parents of children with hearing loss of genetic origin in South Africa

Abstract

More than 80% of people with hearing loss (HL) live in low-and middle-income countries. Up to 90% of deaf children are born to hearing parents, leading to novel parenting, communication, educational, and psychosocial experiences. Half of congenital pre-lingual HL is genetic, with a relatively high recurrence risk that may lead to specific challenges for parents of affected children. Currently, little is known of genes implicated and causative mutations for most populations who have HL in Sub-Saharan Africa, as well as genetic counseling services needs for this population. Therefore, this study aimed to explore parents' perceptions and understanding of the genetic etiology of their child's HL, in order to inform policies and services. In-depth qualitative interviews were conducted with 11 parents of children who have non-syndromic HL of putative genetic origin. Data were analyzed through the framework approach. Three salient themes emerged, namely comprehension and understanding of the cause, in which most parents were unable to identify the potential hereditary cause of their child's HL; responsibility and blame; and their perception of genetic counseling and testing. Most of the participants had positive attitudes towards genetic testing, describing that it may provide answers and that the information gained would be helpful for the future. The data could assist in understanding the challenges faced by parents, in the absence of genetic testing, emphasizing the need for accurate genetic testing to support counseling services to parents of children with HL in an African Setting.

The H3Africa Consortium: Publication Outputs of a Pan-African Genomics Collaboration (2013 to 2020)

“…Publications addressing attitudes and awareness towards diseases also included studies on hearing loss (Gardiner et al, 2019) and sickle-cell disease (Wonkam and Hurst 2014). An interview-based investigation of the content of delusion in 200 Xhosa-speaking individuals with schizophrenia, demonstrated a strong impact of cultural influence with a majority of participants believing bewitchment as the cause of their mental illness (Campbell, Sibeko et al, 2017).…”

Hearing loss and brain disorders: A review of multiple pathologies

“…HL can cause several neurological and psychiatric complications that can reduce quality of life [ 6 ]. Some of the complications may include cognitive impairment, depression, dementia, and comorbidities like cardiovascular diseases and diabetes [ 4 , 7 , 8 ].…”

Knowledge and Challenges Associated With Hearing Impairment in Affected Individuals From Cameroon (Sub-Saharan Africa)

“…Environmental factors such as meningitis, measles, or ototoxicity are the leading causes of HI in low-and middle-income countries, while their burden is lower in high-income countries (6,(8)(9)(10). It is thought that ∼half of congenital HI cases are of genetic origin (3). Pathogenic variants in GJB2 gene constitute the most common cause of non-syndromic HI in European and Asian populations (7), while their prevalence is close to zero in sub-Saharan Africa (SSA) (11).…”

“…People with hearing impairment (HI) have partial or total inability to hear sound in one or both ears ( 1 ). Globally, an estimated 466 million people are currently living with HI, the majority (over 80%) of which are based in low- and middle-income countries ( 3 ). It is also anticipated that by 2050, the global estimates will be over 900 million ( 4 ).…”