Parental Decision-Making and Deaf Children: A Systematic Literature Review.

Parents or caregivers of children who are deaf or hard of hearing are required to make complex and rational decisions soon after the confirmation of hearing loss. Ways of facilitating decision-making have been a focus within the healthcare sector for two decades and shared decision-making is now widely viewed as the standard for good clinical care. A systematic literature review was undertaken to identify the extent to which the principles of shared decision-making and informed choice have been implemented for parents when they make decisions related to their children with permanent hearing loss. Five databases were searched for peer-reviewed papers describing the results of original research published from 2000 to 2017, yielding 37 relevant papers. Studies were reviewed using the three phases of decision-making-information exchange, deliberation, and implementation. Two decisions dominated these studies-implantable devices and communication modality. Most papers dealt with decision-making in the context of bilateral hearing loss, with only one study focusing on unilateral hearing loss. The review identified gaps where further research is needed to ensure the lessons learnt in the broader decision-making literature are implemented when parents make decisions regarding their child who is deaf or hard of hearing.

Decision-making following identification of an infant's unilateral hearing loss: Parent and professional perspectives.

BACKGROUND: Parents of infants identified with unilateral hearing loss (UHL) make decisions about managing their infant's hearing loss based on limited evidence and before knowing whether their infant will require additional support. OBJECTIVES: The decision-making processes of parents and clinicians regarding the management of UHL following newborn hearing screening were examined. PROCEDURE: Two convenience samples were recruited: 15 parents of children with permanent UHL aged under 4 years, and 14 clinicians. Applied thematic analysis of the semi-structured interviews elicited insight into the complexities surrounding decision-making from a parent and clinician perspective. RESULTS: Three main themes captured the decision-making process: motivation for decision-making, limited evidence creates uncertainty, and available evidence builds certainty. The diverse experiences and opinions of parents and clinicians highlight the complexity of decision-making when there are contested opinions and no clear best management option. CONCLUSIONS: The choices parents make about the management of their child's UHL can have lifelong implications for their child. Many questions need answering before parents can effectively evaluate the short- and long-term consequences of their options and whether the advantages outweigh the disadvantages in the long-term. This uncertainty is challenging for professionals and parents and risks cognitive biases influencing clinical and parental decision-making.

Parents of deaf children seeking hearing loss-related information on the internet: the Australian experience.

Parents whose children are diagnosed in an infant screening program are required to make some difficult choices about the management of the hearing loss at a time when they are emotionally vulnerable. They are required to evaluate information and outcomes regarding issues such as technology for hearing impairment, communication options, education, and rehabilitation. The World Wide Web has become an important resource of health information for both health consumers and practitioners. The ability to obtain accurate health information online quickly, conveniently, and privately provides opportunity to make informed decisions. However, little is known about the level of the use of the Internet to acquire health information, particularly in the case of parents of deaf children seeking information. This study confirms that searches for health information on the Internet are conducted primarily by mothers. In the Australian context, there is minimal online information available to families beyond early intervention. Information on education issues, mental health, and deafness or the day-to-day management of a child or adolescent with a hearing loss are neglected topics on Web sites. This study also revealed that the majority of respondents had never visited HealthInsite or Medline Plus, two gateway sites for reliable consumer health information, although the information on these sites is more generic in nature and unlikely to assist parents to make informed choices on complex issues such as communication options or education. However, the study suggested that half the parents have talked to their doctor or hearing professional about information they found on the Internet, which is an encouraging tendency.