Within New Zealand, the ethical reasons behind providing written education materials to patients, or parents of paediatric patients, are further emphasised by legal requirements. Under Right 6 of the 1996 New Zealand Health and Disability Commissioner Code of Health and Disability Services Consumers' Rights, parents have the “Right to be Fully Informed” (p. 4) about any health conditions affecting their child. Further, under Right 5 of this act, parents are entitled to “Effective Communication” in a “form, language and manner that enables the consumer to understand the information provided” (p.4).
Consequently, standard 20 of the UNHSEIP National Policy and Quality Standards states: “The results of audiology assessment, and information about next steps, will be communicated to the parents/guardians immediately, in a sensitive and culturally appropriate manner” (Ministry of Health, 2013, p. 29). Specifically, this requires the audiologist to provide parents with: a verbal explanation of the results, opportunities to ask questions, written resources such as the Family Book or the Getting Started Guide to Hearing Aids, an explanation of the roles of the multidisciplinary team, and finally, a “written report of the audiologist assessment and subsequent referrals to the parents/guardians and GP (and AODC, ENT, paediatrician, and Well Child provider as required) within two weeks of the
assessment” (Ministry of Health, 2013, p. 42).
As implied above, verbal discussion of the assessment results with parents is an essential part of the UNHSEIP. It is also a step valued by many audiologists as the
importance of providing informational and personal adjustment counselling following a HI diagnosis is often emphasised during training (ASHA, 2008). Although it is easy to assume that the verbal information provided is clear and unequivocal to parents, previous research suggests this is not always the case. Indeed, many parents report feeling dissatisfied with
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communication at the time of diagnosis due to the audiologists’ persistent use of jargon, rapid delivery of information and assumptions that parents had knowledge they did not (Gilbey, 2010; Russ et al., 2004; Tattersall & Young, 2006). This results in parents often leaving confused about the specific nature and implications of their child’s HI (Martin, George, O’Neal, & Daly, 1987).
These findings point to the need for providing comprehensible written information to help supplement, reinforce and remind parents of the verbal information and results provided at the time of diagnosis (Joubert & Githinji, 2014). This need is further emphasised because the emotional distress experienced by parents during this period also reduces their reception and comprehension of verbal information (Pretto & Harrison, 2011). Diagnostic reports are one example of a written resource commonly provided to parents involved with audiology services. As mentioned in standard 20, these reports are sent to the parents and members of the multi-disciplinary team and act as a common way for the test results to be relayed to those involved in the care of the child with HI (Johnson & Seaton, 2012).
Providing patients with their health information and results is also common within other health disciplines. The provision of this information ensures open communication between the health professional and the patient or parent, whilst also facilitating
understanding of the condition and encouraging participation in informed and shared
decision-making (Davey, Austoker, & Jansen, 1998; Karnieli-Miller et al., 2009). Patients are known to prefer receiving written notification of their test results as it helps them feel
reassured, better informed and more in control (Jelley & Walker, 2003). However, because reports or letters are typically designed for other professionals, they often contain
considerable medical jargon, vague wording and ambiguous messages which can hamper patient comprehension (Karnieli-Miller et al., 2009).
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The majority of studies examining this issue have been conducted within the United Kingdom, where it is clinical protocol for all letters written by health professionals to be copied to the patient, or where appropriate, the parent or legal guardian (Bhandari, 2010). In theory, all letters should abide by the guidelines released by the Department of Health in 2003, which stress the importance of using plain language. However, studies have identified that the language used in these letters is frequently incomprehensible. For instance, an ‘audit’ conducted by Bhandari (2010) into the letters sent by doctors and nurses to mental health patients revealed that the average RGL of the letters measured by SMOG was 17.2. Furthermore, not a single letter had a RGL below 14 years. Follow-up work conducted by O’Mahony & Kalk (2011) found that none of the letters sent to mental health patients over a 3 month period had scores above 80 on the FRE test, indicating that none of the letters were ‘easy’ or ‘very easy’ to read (O’Mahony & Kalk, 2011).
Combined, these studies suggest that that the majority of patients receiving copies of clinical letters are unlikely to understand all of the contents of the document, which reduces the inherent benefits of sending clinical letters to patients. This is supported by subjective comments made by patients after they received letters advising them of their endoscopy results. During a telephone interview, over 50% of patients reported that they did not
understand the content of the letter, with patients making quotes such as “I didn’t understand a word… it was about me, but not to me” and “[it] looked like ancient Chinese to me” (Karnieli-Miller et al., 2009, p. 345).
Anecdotal reports indicate that New Zealand parents often express analogous concerns after receiving diagnostic paediatric audiology reports. Currently, no research has addressed this issue, yet providing readable reports is a necessity that should be prioritised for several reasons. First, readable education materials may prevent parents turning to equivocal
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information on the Internet, although also reinforcing verbal information communicated. This is particularly important given the emotional distress experienced by most parents following diagnosis, which limits their retention of verbal information at this time. Second, New Zealand parents are legally entitled to receive informative and readable materials. Parents of children with HI may need these even more because they tend to be poorly equipped with prior knowledge about HI on which to develop their understanding. Finally, there is evidence to suggest that providing readable materials may reduce the negative effects of HI on child development, by supporting the emotional adjustment, self-efficacy and health literacy skills of parents. Essentially, for parents of children with HI, knowledge is power.