ARTICLE

Vol. 137 No. 1598 |

DOI: 10.26635/6965.6486

Written information about retinopathy of prematurity in Aotearoa New Zealand: identification, review and opportunities for improvement

Written information is used to guide whānau in the NICU for different procedures including retinopathy of prematurity eye examinations (ROPEE). In Aotearoa New Zealand (Aotearoa) infants born <31 weeks gestational age and/or less than 1,250g birthweight are offered ROPEE.

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Admission to the neonatal intensive care unit (NICU) is a stressful and often unplanned time for whānau (extended family).1 Effective communication between healthcare workers and whānau reduces stress.2,3 Other crucial factors for whānau wellbeing within the NICU include whānau involvement in healthcare, effective health education, emotional support and assurance.4 Challenges in communication, such as lack of information, responsiveness, respect and consideration of culture can contribute to whānau dissatisfaction.5 Additionally, low health literacy can have a detrimental impact on health and is associated with increased hospitalisation and healthcare costs, and reduced health outcomes.6–8 The intensive care environment has unique challenges for staff-to-whānau communication given its highly emotional and technical environment.9 Whānau of preterm infants receive a magnitude of information, much of which may require high levels of health literacy, and face challenges in decision making.1 To support health literacy, understanding and information recall, it is beneficial to provide written information in addition to verbal information.10 Written information has been found to be useful for conveying information and can assist whānau with decision making in the NICU.7,10 Tools for assessment and evaluation of the quality of written information has been developed, including elements such language that can be understood, health literacy and the layout of information to optimise its impact to convey information.11

Written information is used to guide whānau in the NICU for different procedures including retinopathy of prematurity eye examinations (ROPEE). In Aotearoa New Zealand (Aotearoa) infants born <31 weeks gestational age and/or less than 1,250g birthweight are offered ROPEE. During this process, whānau are to be given verbal and written information (print or digital) about ROPEE as part of clinical care and to obtain consent. Preterm infants who meet the eligibility criteria are screened for retinopathy of prematurity (ROP) to optimise outcomes with timely diagnosis and treatment preventing loss of visual acuity and permanent blindness.12 Blindness in children is associated with increased hospitalisation, mortality, delayed development and poorer socio-economic status than children who do not have vision impairment, highlighting the importance of ROPEE.13 Currently in Aotearoa, each NICU has developed their own ROPEE whānau information in varying forms (printed leaflet, website, app). Good design principles exist for written information11 for whānau and the extent to which these apply to ROPEE information is yet to be explored.

The Australian and New Zealand Neonatal Network (ANZNN) data from 2021 demonstrated that 20.2% of eligible preterm infants did not have a ROPEE performed.14 Eligibility criteria differ between the two countries, where Aotearoa New Zealand infants born fewer than 30 weeks gestational age and/or 1,250g birthweight are eligible, and Australian infants born fewer than 32 weeks gestational age and/or 1,500g birthweight are eligible. It is unclear currently as to why this significant number of infants, in line with each country’s eligibility criteria, had missed opportunities for ROPEE. Supporting whānau consent and engagement in ROPEE through communication aids, such as written material, is important to ensure whānau are fully informed of eligibility for these tests, and this will have an impact on health outcomes. These opportunities are especially important for whānau who might not experience systemic privilege in outcomes, such as Māori who have a higher risk of extremely and very preterm birth and have a significantly higher relative risk of early neonatal death or post-neonatal death.15 Māori infants account for 28% of preterm infants and an associated higher risk for ROP due to higher preterm birth rates.15 Previous research has demonstrated that cultural, social and health inequities disproportionally affect Māori.16,17 Te Tiriti o Waitangi (the Treaty of Waitangi), is an Aotearoa foundational document that holds the health system accountable to ensure whānau Māori experience equitable culturally safe health outcomes.16,18 Given the higher rates of prematurity and health inequities experienced by whānau Māori, written NICU resources need to be culturally appropriate and optimise consent and engagement to provide whānau Māori the autonomy required for informed decision making around ROPEE. Additionally, the role of whānau within the NICU for reducing both whānau and pēpi (baby) stress has been demonstrated with Family Integrated Care (FiCare) approaches.19,20

The aims of this research are to identify and review written information whānau are provided for the ROPEE using the adapted good-design principle tool,11 and to identify potential opportunities to improve the ROPEE written information within an Aotearoa context.

Methods

In Aotearoa, there are six tertiary (level 3) NICUs, and each were contacted between January and March 2023 and requested to provide their ROPEE written information to review. Each neonatal unit has between 16 and 41 beds from 23 weeks gestational age onwards. Additional ROPEE written information available online via a website or an app was also included in this review.

The “20 good-design principles” to evaluate medicine information by Young et al. were reviewed and modified for whānau of preterm infants to include two new principles (te reo Māori, Māori imagery) and five existing criteria for ROPEE clinical information.11 These principles and criteria were added to consider Māori cultural concepts and information specific to the ROP condition. The new principles included reviews for inclusion of Māori imagery; use of te reo Māori (Māori language) and “ROPEE clinical information”. The grading for te reo Māori was rated as absent or present.

Five criteria for “ROPEE clinical information” were identified based on clinical expertise and evidence-based medicine, including information provided on: what is ROP; why ROPEE are important; the procedure; what parents can do during the examination; and care after the examination. Assessing what information whānau receive for the entirety of the ROPEE was included to evaluate the education whānau receive about parental presence and involvement. Each source of information was reviewed by an experienced neonatologist ranking the information based on these criteria.

Information from the ROPEE material was reviewed against the adapted good-design principles and tabulated for comparison. Each resource was given a star rating, developed and based in accordance with the adapted good-design principles, by one investigator, which was corroborated by two researchers to support an assessment of how well the good-design principles were met. The star rating was two stars for “consistent”, one star for “somewhat consistent”, and no stars for “not consistent”. An assessment of ease of reading was established via the Flesch–Kincaid grade level, and Flesch–Kincaid reading ease score and average sentence length were obtained by running text from the written information through an online program.20 The reading age of an 11-year-old was considered reasonable from a review of five regulatory agencies’ recommendations for written medicine information.11 For those containing Māori imagery, clarification was sought from the NICU if the whakapapa (history) of the images or meanings were not apparent on review.

Results

Written information from six hospitals was included within the analysis, with a total of seven information materials reviewed. Of these, five were printed and given in-person or via email to members of the research team. One hospital provided two written information materials; one was available on a website, and one was a free downloadable application. Each was analysed for the characteristics described in the Methods section and summarised in Table 1, using star ratings to identify consistency with principles.

The ROPEE written information varied in consistency with the adapted content and design principles described in the methodology. No written information ranked consistent for all points of clinical information. Three of the written information materials were rated consistent for “what is ROPEE”, and only one to two were rated as consistent for “why ROPEE are important”, “the procedure”, and “what parents can do”. None of the written information included information about “what parents can do”.

View Table 1.

For words and language rating, the Flesch–Kincaid readability score ranged from 49.1 to 72.2 (average: 58.6), which corresponded with a Flesch–Kincaid grade level that ranged from ages 12 to 22 years (average: 9.4–15 years). In the detailed analysis, complex words and medical jargon occurred in all seven information materials (e.g., vitreous, speculum, bradycardia) and less obvious medical jargon (e.g., dilate, ophthalmologist, neonate). Some medical jargon was considered necessary (e.g., retina) in materials; however, five of these mostly explained medical jargon (≦3 medical jargon words not explained) while two only sometimes explained medical jargon (≦6 medical jargon words not explained). In one, a sentence of capital letters was included, “CONTACT YOUR FAMILY DOCTOR”, adversely affecting the tone of the written information. Additionally, it also used some outdated gendered language implying “he” will be the ophthalmologist. Another contained many brackets throughout the text that could have been explained in sentences (e.g., “[either weekly or two weekly whilst still in the unit]”).

None of the written information included extensive use of te reo Māori. The only te reo Māori words included were the name of the hospitals and the mention of the word whānau in the title of one of the written information materials. Three of the written information materials contained Māori imagery. The whakapapa of the images was sought from the NICU involved. Identified whakapapa included the image of a bird with koru (fern shape) that was related to an overarching theme of the hospital. The borders contained a kōwhaiwhai (lattice) pattern that depicted growth, development and the interactions between a person and their environment. These connect the past to present using the knowledge and experiences of old and new to strengthen future generations and is the reason for inclusion in the written information. Other imagery appeared “medical textbook”-like, or conveyed little information in the image; for instance, an infant on its own. Of note, none of the materials provided information as to the whakapapa of the imagery.

In the design components, written information seldom emphasised text by use of bolding, italics or highlighting. Three contained little or no headings, which made it difficult to locate information. A table of contents was present in one online website; however, since all materials were short, a table of contents may not be necessary. The page layout and page text were variable. Two written information materials used the two columns of information recommended, while three (two digital sources and one printed leaflet) used one column of text, which made lines long and not preferable. Two of the printed leaflets had text sections that continued over to the next page, which was also undesirable when rated by good-design principles.

Discussion

This study highlights the variability of written information used in NICUs in Aotearoa to convey information to whānau around ROPEE, and it profiles the opportunities for future improvement and development of this information. Optimal communication with whānau provides openings to reduce whānau stress and support engagement and consent to ROPEE for lifelong eye health and wellbeing. Using tools such as the adapted good-design principles11 to review the ROPEE written information in NICU units in Aotearoa enables NICU teams to consider opportunities for improvement when developing and implementing clinical tools such as written information. It is important that whānau receive sufficient clinical information to support informed decision making on consent for the ROPEE. Our results show that only 20% of the clinical information provided in the written information was rated as consistent (two stars). Previous research has shown that parents want and need detailed and written information that is complete and accurate.2,3

Most of the written information reviewed did not include widespread use of te reo Māori kupu and Māori imagery, required a high level of literacy and contained unnecessary medical jargon and abbreviations. Overall, information could be optimised to support informed consent. These factors provide unnecessary barriers to engaging with written information and reduce the ability for whānau to use the written information when deciding whether to consent for their infant(s) to undergo a ROPEE. Written health information that is engaging, informative and meaningful for Māori is an important strategy to contribute to health equity for Māori and uphold the principles of Te Tiriti o Waitangi.21 The incorrect use of Māori cultural images along with technical and lengthy text can result in cultural disconnection.22 For health information to be successful, it is essential that Māori input occurs with any redesign of written health information to ensure uptake and prevent cultural appropriation of imagery.23 Examples of successful Māori-centred programmes include a Safe Sleep initiative involving all hospitals in Aotearoa.24 Culturally appropriate written information was used in this programme successfully, with a reduction in post-perinatal mortality by up to 29% for Māori.24 The inclusion of Māori-oriented communication in future ROPEE written information will be of value in contributing to achieving health equity for Māori preterm infant health. Given that there is currently no national standardised ROPEE written information, the opportunity to design one meeting health literacy and whānau needs is imperative. If done well it will be a pro-equity tool that NICU clinicians can use with whānau Māori in the NICU.

If written information includes complex content (such as ROPEE), information may be discarded and not read, especially by those who have challenges with the dominant language or literacy.8,25,26 Literacy is related to the readability of information provided and all the written information reviewed had a Flesch–Kincaid grade level above the recommended reading level of grade 6 (11 years old).27 When creating written information, word complexity is important rather than the length of the word.28 For example, the word examination has more syllables than dilate; however, dilate may be a harder word for some whānau to understand especially if English is not their first language.29 Simplifying words and language—for example from ophthalmologist to “eye doctor”—is a strategy to increase readability. Low-literate individuals experience a high cognitive load when reading; therefore, having some information provided as images may alleviate this26 and support informed consent processes.30 The images in written information need to add value rather than be distracting, and there are opportunities for meaningful Māori imagery to be incorporated in written information to support information provision. Navigation of written information is important, and tools such as headings can be used to assist this;31 however, our analysis indicates that headings were seldom used, making it difficult to locate information. Other challenges identified included the use of outdated gendered language; claiming “he” will be the ophthalmologist, demonstrating stereotypical attributes that doctors are male, which is incorrect.

The strengths of our study included the inclusion of all the written information (printed leaflets and web-based information) available within level 3 NICUs in Aotearoa. By doing so this provided the opportunity to learn from a diverse group of written information currently in use. ROPEE examinations also occur in level 2 units locally, once whānau are transferred home regionally, and there is the possibility that other localised written information is in use. However, the study highlights the variability present, and it could be postulated that this also occurs in smaller centres with smaller staff resourcing to develop resources for whānau. The lack of exploring whānau voices in this research is a limitation and it would be of interest to explore their experiences of written information and perspectives for future development as the end-users of such resources. It was not possible to discuss with the original authors the processes for material development given the likely significant time and energy that would have been invested, often with limited resources within the health sector dedicated to such development.

The creation of new national ROPEE written information for Aotearoa that has appropriate content and design with optimal health literacy considerations will enhance these resources. The move towards more digitalised resources or apps on devices such as smartphones also needs to be considered. Future research is needed into the development and user testing of new written information on ROPEE involving whānau Māori in collaboration with whānau, and with a nation-wide approach.

Aim

The aims of this research include adapting a patient information tool for whānau (extended family) Māori needs, identifying and reviewing written information provided for the retinopathy of prematurity eye examination (ROPEE) and identifying improvements to ROPEE written information.

Methods

ROPEE patient information (printed leaflets, website, app) was obtained from all tertiary neonatal intensive care units in Aotearoa New Zealand (Aotearoa). Information was reviewed using an adapted “20 good-design principles” guide and given a star rating and Flesch–Kincaid readability score to identify acceptability and usability for patients.

Results

Seven ROPEE information materials were reviewed and varied in alignment with the adapted good-design principles tool. Based on the adapted good-design principles, opportunities were identified in many aspects of the written information for improvement, including words and language, tone and meaning, content and design. The Flesch–Kincaid grade level reading scores ranged from 12–22 years reading age. Written information also did not use te reo Māori (Aotearoa Indigenous language) or extensively use Māori imagery.

Conclusion

Opportunities exist to improve ROPEE whānau information, including making content more readable, understandable and visually appealing. Optimising the clinical information on ROPEE nationally for Aotearoa will support whānau decision making, and aligning written information with Māori (Indigenous peoples of Aotearoa) is a priority.

Authors

Holly White (Tauiwi) BSci, BPharm: He Rau Kawakawa (School of Pharmacy), University of Otago, Dunedin, Aotearoa New Zealand.

Lisa Kremer (Kāi Tahu, Kāti Māmoe, Waitaha) PhD: He Rau Kawakawa (School of Pharmacy), University of Otago, Dunedin, Aotearoa New Zealand.

Liza Edmonds (Ngāpuhi, Ngāti Whātua) MBChB, MMed, FRACP: Kōhatu Centre for Hauora Māori, Division of Health Sciences, University of Otago, Dunedin, Aotearoa New Zealand; Department of Women’s and Children’s Health, Dunedin School of Medicine, University of Otago, Dunedin, Aotearoa New Zealand; Te Whatu Ora – Health New Zealand Southern, Neonatal Intensive Care, Dunedin Hospital, Dunedin, Aotearoa New Zealand.

Amber Young (Taranaki) PhD: He Rau Kawakawa (School of Pharmacy), University of Otago, Dunedin, Aotearoa New Zealand.

Acknowledgements

The authors wish to acknowledge Thelma Fisher, Subject Librarian at the University of Otago, for their support in upskilling some members of this research group in literature searching. Additionally, the authors would like to thank Dr Jason Wister for reviewing the clinical information of the retinopathy of prematurity written information. This project was completed as part of an honours project supported by He Rau Kawakawa (School of Pharmacy) University of Otago.

Correspondence

Lisa Kremer: School of Pharmacy, University of Otago, 18 Frederick St, Dunedin 9016, New Zealand. Ph: 006434797275 Fax: +6434797034

Correspondence email

lisa.kremer@otago.ac.nz

Competing interests

Nil.

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