Early Hearing and Communication Development

Chapter VIII: Infrastructure

Context

Authors: Krista Riko, Dr. Martyn Hyde, and Dr. David Brown

The scope of an effective early hearing and communication development (EHCD) program for hearing impaired infants is very broad. A population/public health approach, rather than the traditional doctor/audiologist/patient medical model, is likely to support most appropriately all of the processes necessary to ensure the earliest possible access to communication and literacy development for hearing impaired infants. A variety of professional groups and agencies must be able to work together collaboratively if an EHCD program is to be successful.¹

The World Health Organization (WHO)² and the National Screening Committee of the British National Health Service³ have identified specific criteria that justify implementation of a screening program. Both of these bodies identify acceptable diagnostic tests and access to effective treatment or hearing and communication development (HCD) options, among other criteria, as necessary ingredients of screening programs. In this context, EHCD programs are comprised of successive stages, or subprograms, that include screening, surveillance, audiologic assessment, medical assessment, family support and provision of options for communication development. Hearing screening, the starting point of an EHCD program, has traditionally been the component that has received the greatest attention. However, a preoccupation with screening may result in insufficient attention to the other, critical components of EHCD programs. Bess and Penn⁴ have reiterated that: "it is inappropriate to screen for any disorder without certainty that facilities for suitable follow-up care of individuals who fail the screen are readily available."

The performance characteristics of each successive sub-program of the EHCD program are critical because deficiencies in each will compound serially and may seriously compromise the overall EHCD program performance.¹ The weakest link in the chain will dominate overall program effectiveness. For example, limitations in screening coverage, imperfect attendance for definitive audiologic assessments and limited compliance with follow-up recommendations can result in a serious, cumulative program shortfall. For an EHCD program to be "successful," each sub-program must have excellent performance characteristics and its goals/objectives must align with all the others, and all sub-elements must communicate and link effectively.⁵

Ideally, the development of an EHCD program, including each of its sub-programs, should conform to standard principles of program design.⁶ Prior to implementation, each component should have clearly articulated, predetermined goals and objectives, preferably in quantifiable terms. Structures, processes and outcomes should be defined in such a way as to make program evaluation and quality management possible. To the greatest extent practicable, these considerations should have been dealt with before the first baby is screened.

A poorly-structured program that does not deliver what it seems to promise (i.e., to promote effective family communication) can have negative consequences that are difficult to anticipate. For example, an EHCD program, even though it may have poor performance characteristics, may result in other systems or services for dealing with this population to be altered or withdrawn, on the assumption of the existence of appropriate, replacement mechanisms. A comprehensive examination of infrastructure will anticipate such performance issues before they become problems and identify possible solutions. For example, initial funding of a universal screening program may be insufficient to provide definitive audiologic assessment for all infants who have a refer result on screening, or to provide for appropriate HCD options. A temporary solution to such a program deficiency might be to identify a smaller target population (e.g., a high-risk group) for whom the full spectrum of services is deliverable within the funding envelope. Such a model program approach could pave the way for a larger, more comprehensive and fully funded EHCD program.

Infrastructure

Infrastructure is the "glue" that keeps all program components together and in synchrony. It relates to those elements that support, sustain and link all program components to achieve the ultimate program goal. The main components are: human resources, information systems, administrative systems and communication systems.

1. Human Resources

Good human resources (HR) management is a critical feature of a successful EHCD program. In addition to the traditional attributes of good HR practice (e.g., appropriate qualifications, clear roles and responsibilities, job descriptions, performance management, appropriate orientation and training, and quality assurance programs), it is important to consider the "softer" side of staff recruitment and retention. Staff who are committed to the program and perceive their work to be valuable will do their best to make the program succeed. Staff who have been co-opted or have had their workload stretched to breaking point are unlikely to maximize program performance.

While it is common to discuss EHCD programs in terms of technology choices, pass/ refer rates, and compliance with follow-up as though they were the same discreet entities from program to program, such features are often governed primarily by staff attitudes towards the program. Sometimes, for example, the obvious choice for screening personnel does not play out in the "real world" - overloaded nursing staff may resent additional work unless they are convinced of its value to their patients, whereas support staff may find the work challenging and interesting. Local circumstances often dictate the best choice of staffing for some tasks, unless specific expertise is required (e.g., an audiologist for detailed hearing assessments).

Any EHCD program will need staff with a variety of skill sets if it is to be sustainable. A coordinator who oversees the whole program is a key individual and local circumstances usually will determine the person best suited for this important task.

Typically, there is also need for some level of clerical support to take care of, for example, data entry, filing and supplies. The professional staff involved include the screeners, the audiologist, auditory verbal therapists, American Sign Language (ASL) and Langue des signes quebecois (LSQ) providers, aural/oral therapists, counselors and hearing aid dispensers. Information systems (IS) and information technology (IT) support staff who can maintain and service all of the computing and test equipment are also key individuals. The coordinator should be an individual with excellent "people" skills and diplomacy to meld what is typically a disparate group of individuals into a smoothly operating team.

In addition to staff dedicated to and funded by the EHCD program, other professional groups such as otolaryngologists, neonatologists, paediatricians, family practitioners, social workers, nurses, speech-language pathologists and deaf educators will be involved with identified infants. Full-time EHCD staff will have to devote effort to developing effective linkages and communication systems with these professional colleagues, many of whom may be less familiar with the deaf/hard of hearing neonatal/infant population. The relevant professional groups will vary regionally, but the importance of identification and inclusion of all the key players cannot be underestimated.

2. Information Systems

The importance of a high quality, automated IS for tracking, follow-up and seamless transition from one program stage to the next, as well as for program evaluation, cannot be overemphasized. The problems with manual methods have been described.⁷ Several standard software packages are available, so it is important not to undertake development of custom systems without a great deal of thought, expertise and resources. Identification of critical data fields requires a deep understanding of the goals of the program and the ultimate intended use of the captured information. A shotgun approach to data collection is likely to consume resources and yield little useful information. If physical forms are utilized, they should be user-friendly and be formatted so that they facilitate accurate and rapid data entry.

Consent and confidentiality are especially important considerations in relation to information management. Parental consent is commonly required before any EHCD procedure is performed or any results are sent to third parties.⁷ If an institution were to adopt hearing screening as part of its standard of care, then the consent for screening itself would be subsumed under a global consent. But care must be taken to ensure optimal and timely flow of communication regarding individual infants and families. However, even in that situation, consent to release results to third parties would probably be required. Knowledge of local legislation is important when designing an EHCD program: in one province of Canada, for example, it is legislated that consent must be obtained before any information can be transmitted electronically. Program design must also take into account that families/caregivers have the right to decline consent, and the program must be able to deal with such circumstances effectively, for example, by providing helpful information that may encourage consent subsequently.

Confidentiality is an important feature of our medical system and it is important that all EHCD program staff be aware of the need to treat all personal client information as confidential.⁴ Confidentiality requirements extend to communication of patient information by any means - spoken, written or electronic. For example, when designing EHCD program facilities, fax machines and computers should be located in areas accessible only to staff, and telephones should be located so that the public is not privy to staff conversations. Program quality assurance systems will have to address the integrity of their confidentiality and consent systems. For example, the IS should be structured so that it is possible to audit who has accessed patient files and whether consents were recorded.

3. Administrative Structures

EHCD programs, like all other programs, need administrative structures to ensure that program mission, goals and objectives are defined and support its clinical functions. The program co-coordinator is the person most likely to be responsible for these functions. They include setting up systems for maintaining financial, staff and clinical records. Budgeting and fund raising are critical features of program infrastructure. The program should have a transparent accountability/reporting structure that includes all program personnel and is accessible to anyone who has a right to access program information. The administrative system would ensure that the program has developed and defined standard protocols and that they are disseminated and adhered to by all staff. Forms development is an important function - staff will follow standard protocols and enter all required data fields when they have efficient, user-friendly forms. The administrative structure would also ensure that staff has access to appropriate, ongoing training and educational opportunities. Program evaluation and continuous quality improvement initiatives are administrative responsibilities that will ensure program efficiency, effectiveness and systematic evolution.

4. Communications and Public Relations

A broad-based communications/public relations program is an invaluable means of securing support and demand for an EHCD program. Parents, professional groups (e.g., audiologists, otolaryngologists, neonatologists, paediatricians, family physicians, nurses, etc.) and consumer groups should receive information about the EHCD program by as many means as possible. Television and radio spots, Internet web pages, videos, newspaper articles, professional journal articles, consumer group newsletters, pamphlets and brochures are all possible means of "getting the information out there." Multiple means are more effective than one or two approaches because different groups seem to have different preferences for information content and presentation. For example, many physicians seem to prefer relatively brief, factual information, written in bullet point form, as opposed to videotapes. A good promotional effort will galvanize all stakeholders and thereby improve consent for screening, compliance with follow-up recommendations and, ultimately, long-term sustainability of the EHCD program when the inevitable competition for resources arises.

Every EHCD program exists within social, cultural and political values and contexts that influence how a particular region chooses to spend its resources. Catching the brass ring is often a question of being known by the right person (the key "influencer") at the right place and the right time (the luck component), but usually that alone is not sufficient. Being prepared to provide potential sponsors with evidence that is easily understood is usually vital for making the case to support an EHCD program.

Conclusions

• Public health system models and linkages seem more appropriate than traditional medical models for effective delivery of comprehensive early hearing and communication development (EHCD) programs.
• Human resources are critical components of EHCD programs.
• Careful attention is also required for information management, administrative structures and external communications if an EHCD program is to be effective and sustainable.

Key References

1. Hyde ML, Riko K. Design and evaluation issues in Universal Newborn Hearing Screening programs. J Speech Lang Pathol Audiol. 2000;24(3):102-18.
2. World Health Organization. Principles and practices of screening for disease. Geneva: WHO; 1968.
3. U.K. National Screening Committee [homepage on the Internet]. Criteria for appraising the viability, effectiveness and appropriateness of a screening program, 2003. Available from: <http://www.nsc.nhs.uk/uk_nsc/uk_nsc_ind.htm>.
4. Bess FH, Penn TO. Issues and concerns associated with Universal Newborn Hearing Screening programs. J Speech Lang Pathol Audiol. 2000;24(3):119-129. (At p. 126.)
5. Finitzo T, Grosse S. Quality monitoring for early hearing detection and intervention programs to optimize performance. Ment Retard Dev D R. 2003;9:73-8.
6. Aday LA, Begley CE, Lairson DR, Slater CH. Evaluating the medical care system: effectiveness, efficiency, and equity. Ann Arbor, MI: Health Administration Press; 1993.
7. Finitzo T, Crumley W. A model Universal Newborn Hearing Screening program for hospitals and birthing facilities. J Speech Lang Pathol Audiol. 2000;24(3):102-18.

Additional Reference

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