Rural Family Perspectives and Experiences with Early Infant Hearing Detection and Intervention: A Qualitative Study

Elpers, Julia; Lester, Cathy; Shinn, Jennifer B.; Bush, Matthew L.

doi:10.1007/s10900-015-0086-1

Cited by 53 publications

(59 citation statements)

References 15 publications

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“…44 Misinformation from providers and difficulty coordinating appointments were prominent barriers to appropriate follow-up for infant hearing testing. 45 …”

Section: Barriers To Pediatric Hearing Healthcare Deliverymentioning

confidence: 99%

Disparities in access to pediatric hearing health care

Bush

Kaufman²,

McNulty³

2017

Current Opinion in Otolaryngology &Amp; Head &Amp; Neck Surgery

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Purpose of Review There are significant disparities in care facing children with hearing loss. The objective of this review is to assess the current disparities in pediatric hearing healthcare delivery, describe the barriers of efficient and effective pediatric hearing healthcare, and explore the innovations to improve pediatric hearing healthcare delivery. Recent findings Children with hearing loss from certain geographic regions or ethnic background are significantly delayed in diagnosis and treatment. Multiple patient characteristics (presentation of hearing loss), parental factors (insurance status, socioeconomic status, educational status, and travel distance to providers), and provider barriers (specialist shortage and primary care provider challenges) prevent the delivery of timely hearing healthcare. Advances such as improved screening programs and the expansion of care through remote services may help to ameliorate these disparities. Summary Timely identification and treatment of pediatric hearing loss is critical to prevent lifelong language complications. Children from vulnerable populations, such as rural residents, face significant disparities in care. Careful assessment of these barriers and implementation of culturally-acceptable interventions are paramount to maximize communication outcomes of children with hearing loss.

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“…44 Misinformation from providers and difficulty coordinating appointments were prominent barriers to appropriate follow-up for infant hearing testing. 45 …”

Section: Barriers To Pediatric Hearing Healthcare Deliverymentioning

confidence: 99%

Disparities in access to pediatric hearing health care

Bush

Kaufman²,

McNulty³

2017

Current Opinion in Otolaryngology &Amp; Head &Amp; Neck Surgery

Self Cite

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“…Misinformation, inconsistent care, cultural or health beliefs, socioeconomic status, mistrust of the healthcare system, and lack of social support influence nonadherence within healthcare . Within the EHDI field, factors complicating access to care include poor communication of hearing screening results, difficulty in obtaining outpatient testing, inconsistencies in healthcare information from primary care providers, lack of local resources, insurance‐related healthcare delays, and conflicts with family and work responsibilities . Addressing these barriers to care is complicated and may require multiple approaches.…”

Section: Discussionmentioning

confidence: 99%

“…25 Within the EHDI field, factors complicating access to care include poor communication of hearing screening results, difficulty in obtaining outpatient testing, inconsistencies in healthcare information from primary care providers, lack of local resources, insurancerelated healthcare delays, and conflicts with family and work responsibilities. 38 Addressing these barriers to care is complicated and may require multiple approaches. Families of children with hearing loss report that they lack confidence and resources needed for healthcare decision making for their child.…”

Section: Discussionmentioning

confidence: 99%

Promotion of early pediatric hearing detection through patient navigation: A randomized controlled clinical trial

et al. 2017

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Objectives To assess the efficacy of a patient navigator intervention to decrease non-adherence to obtain audiological testing following failed screening, compared to those receiving the standard of care. Methods Using a randomized controlled design, guardian-infant dyads, in which the infants had abnormal newborn hearing screening, were recruited within the first week after birth. All participants were referred for definitive audiological diagnostic testing. Dyads were randomized into a patient navigator study arm or standard of care arm. The primary outcome was the percentage of patients with follow-up non-adherence to obtain diagnostic testing. Secondary outcomes were parental knowledge of infant hearing testing recommendations and barriers in obtaining follow-up testing. Results Sixty-one dyads were enrolled in the study (patient navigator arm=27, standard of care arm=34). The percentage of participants non-adherent to diagnostic follow-up during the first 6 months after birth was significantly lower in the patient navigator arm compared with the standard of care arm (7.4% versus 38.2%) (p=0.005). The timing of initial follow-up was significantly lower in the navigator arm compared with the standard of care arm (67.9 days after birth versus 105.9 days, p=0.010). Patient navigation increased baseline knowledge regarding infant hearing loss diagnosis recommendations compared with the standard of care (p=0.004). Conclusions Patient navigation decreases non-adherence rates following abnormal infant hearing screening and improves knowledge of follow-up recommendations. This intervention has the potential to improve the timeliness of delivery of infant hearing healthcare and future research is needed to assess the cost and feasibility of larger scale implementation.

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“…The available studies on this topic focused mainly on how parents value the access to diagnosis and early intervention [9,10], to early literacy [11], or to the mainstream schools through the adequate provision of educational services [12]. From these studies, it can be highlighted that DHH children and their families are still facing important obstacles to access the necessary services, such as: important delays in the first diagnosis and treatment of hearing loss [9]; poor communication of hearing screening results, inconsistencies in healthcare information from primary care providers, and lack of local resources [10]; an inadequate access to literacy during preschool activities [11]; or a lack of collaboration with special educator in mainstream schools [12].…”

Section: The Access To Services and Supports Of Deaf And Hard-of-hearmentioning

confidence: 99%

“…In many cases, although services were available, they remained elusive for parents who lived in remote areas. As research has shown [9,10], living in a rural or remote geographical locations limits the access to social and health services and put families at risk. There are models of hearing-health care for children who live with their families in remote areas where services are found to be cost effective.…”

Section: Bringing and Adapting The Services To The Rural Settingsmentioning

confidence: 99%

Is the Right to Access to the Services and Supports Ensured for the Deaf and Hard-of-Hearing Children? An Ethnographic Study Based on the Experience of Hearing Parents

2018

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Abstract:The right of people with disabilities to access services and supports they need is internationally recognized by the United Nations' Convention (CRPD) on the Rights of Persons with Disabilities. However, deaf and hard-of-hearing children face obstacles to access services requested by their parents. As part of a broader ethnographic research project focused on the experience of Francophone hearing parents of deaf and hard-of-hearing children, this study explores the obstacles encountered by parents in their struggle to ensure that the needs of their children are met. 117 parents from Canada (n = 52), Belgium (n = 15), France (n = 23), and Switzerland (n = 27) participated in an in-depth interview. The main findings show that parents face important difficulties to access the available services due to their rural location, situated far from the main health services and due to the long wait times. Also, the unavailability of some of the rehabilitation and educational services represent another important obstacle that leads parents to become the main advocates for their children rights. Finally, some lines of action to implement the CRPD provisions are drawn to contribute to the right of deaf and hard-of-hearing children to access to the services they need.

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Rural Family Perspectives and Experiences with Early Infant Hearing Detection and Intervention: A Qualitative Study

Cited by 53 publications

References 15 publications

Disparities in access to pediatric hearing health care

Disparities in access to pediatric hearing health care

Promotion of early pediatric hearing detection through patient navigation: A randomized controlled clinical trial

Is the Right to Access to the Services and Supports Ensured for the Deaf and Hard-of-Hearing Children? An Ethnographic Study Based on the Experience of Hearing Parents

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