Parent challenges, perspectives and experiences caring for children who are deaf or hard-of-hearing with other disabilities: a comprehensive review

Objective: The purpose of this literature review was to explore parent challenges in caring for children who are deaf or hard of hearing with other disabilities and discuss implications for audiologists related to supporting families.

Design: A comprehensive literature review was conducted, and through qualitative analysis, emergent themes were identified, and a narrative summary generated.

Study sample: Nine research studies were included in this review. Combined, these studies reflect a sample of 111 children, 23 families and 41 parents.

Results: Three broad themes were identified, and include parent-reported challenges related to family, professional and child variables. Sub-themes were identified within each broad theme to further describe parent experiences, such as challenges related to decision-making and planning, interprofessional collaboration, and child communication and behaviours.

Conclusions: Parents of children with hearing loss and additional disabilities face unique challenges related to family, professional and child variables that could impact how they manage their child’s hearing care.


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Parental views on otitis media

This study aims to describe parental experiences and perspectives of caring for a child with otitis media | European Journal of Pediatrics


We conducted a systematic review of qualitative studies on parental perspectives on caring for a child with otitis media. We searched electronic databases to July 2015. Seventeen studies involving 284 participants from six countries were included. We identified seven themes: diminishing competency (guilt over failure to identify symptoms, helpless and despairing, fear of complications, disempowered and dismissed); disrupting life schedules (disturbing sleep, interfering with work, burden on family); social isolation (stigma and judgement, sick consciousness); threatening normal development (delaying growth milestones, impairing interpersonal skills, impeding education); taking ownership (recognising symptoms, diagnostic closure, working the system, protecting against physical trauma, contingency planning); valuing support (needing respite, depending on community, clinician validation); and cherishing health (relief with treatment success, inspiring resilience).

Conclusion: The additional medical responsibilities and anxieties of parents caring for a child with otitis media, often discounted by clinicians, can be disempowering and disruptive. Chronicity can raise doubt about treatment efficacy and parental competency, and fears regarding their child’s development. Care that fosters parental confidence and addresses their concerns about the child’s development may improve treatment outcomes for children with otitis media.

Full reference: Chando, S. et al. (2016) Parental views on otitis media: systematic review of qualitative studies. European Journal of Pediatrics. 175: 1295. 

Knowledge and attitude of parents/caregivers towards hearing loss and screening in newborns – a systematic review

Ravi, R. et al. International Journal of Audiology | Published online: 15 August 2016

Objective: The parents/caregivers of a newborn play a pivotal role in the process of hearing screening and intervention. The decisions taken by them depend on their knowledge and attitude. The purpose of this study was to review the literature systematically on knowledge and attitude of parents/caregivers towards infant hearing loss and newborn hearing screening.

Design: A systematic search was conducted using electronic databases for the periods from 1990 to March 2016. Two authors scrutinized the studies and extracted the data based on predetermined criteria.

Study sample: Ten studies.

Results: Ear discharge was correctly identified as a risk factor for hearing loss along with measles, drugs/medication, family history, congenital causes and noise exposure. The studies revealed mixed results for knowledge about newborn hearing screening. Overall, the parents/caregivers showed positive attitudes towards hearing screening and intervention options. However, due to heterogeneity in the studies, it’s hard to derive a conclusion.

Conclusions: The present review sheds light on the common areas of misconception among parents/caregivers about risk factors of infant hearing loss and newborn hearing screening. The review also draws attention to the need to have more studies exploring this knowledge and attitude of parents/caregivers among diverse populations.

Read the abstract here

Parent-to-Parent Support for Parents With Children Who Are Deaf or Hard of Hearing: A Conceptual Framework

Henderson, R. et al. Parent-to-Parent Support for Parents With Children Who Are Deaf or Hard of Hearing: A Conceptual Framework. American Journal of Audiology, December 2014, Vol. 23, 437-448.

parent to parent support diagram

Background: Parent-to-parent support for parents with children who are deaf or hard of hearing (D/HH) is identified as an important component of Early Hearing Detection and Intervention (EHDI) programs for children with hearing loss.

Purpose: The specific aim of this review was to identify the constructs and components of parent-to-parent support for parents of children who are D/HH.

Research Design: An extensive scoping literature review identified 39 peer-reviewed articles published from 2000 to 2014. Studies were selected and reviewed based on standardized procedures.

Results: Data were identified, extracted, and organized into libraries of thematic and descriptive content. A conceptual framework of parent-to-parent support for parents of children who are D/HH was developed and presented in a comprehensive, bidirectional informational graphic. The constructs and components of the conceptual framework are (a) well-being: parent, family, and child; (b) knowledge: advocacy, system navigation, and education; and (c) empowerment: confidence and competence.

Conclusion: The findings from this scoping review led to the development of a structured conceptual framework of parent-to-parent support for parents of children who are D/HH. The conceptual framework provides an important opportunity to explore and clearly define the vital contribution of parents in EHDI programs.