Lived Reality of Retinopathy of Prematurity Eye Examinations: A Study Protocol for the Exploratory Qualitative Study With Whānau Māori

Abstract

Retinopathy of prematurity (ROP) is an eye condition that predominately affects preterm infants born less than 30⁺⁶ weeks gestational age and/or with a birthweight less than 1250 g. If left untreated ROP can result in permanent blindness, and early detection with regular eye examinations and appropriate treatment can prevent this outcome. The necessary eye tests can be invasive for the infant and leave whānau (extended family) feeling distressed and anxious, which is often why whānau are encouraged to leave the room while the eye examination takes place. This research will explore the lived experiences of whānau Māori during the eye tests in the Neonatal Intensive Care Unit (NICU). Hui (focus groups/interviews) have been chosen in different locations to obtain diverse whānau Māori lived experiences. During the hui, relationships will be established and in-depth discussions will occur. By carrying out this research, a Māori perspective of the ROP eye test and surrounding protocols will be gained as well as insight into how the experience can be optimised for whānau Māori.

Background

Retinopathy of Prematurity and Health Equity in Aotearoa (New Zealand)

Retinopathy of prematurity (ROP) is an eye condition which if left undetected and untreated may cause loss of visual acuity or permanent blindness. To reduce the risk of vision impairment eligible preterm infants have regular eye examinations to enable early identification of ROP, and if needed, treatment. In Aotearoa, preterm infants born less than 30⁺⁶ weeks gestational age, and/or 1250-g or less birthweight meet the eligibility criteria for retinopathy of prematurity eye examinations (ROPEE) (Tan et al., 2015). There are other preterm infant specific conditions that can prompt neonatologists to request ROPEE, for example prolonged periods in high inspired oxygen, treatment with nitric oxide for persistent pulmonary hypertension of the newborn, and high grade intraventricular haemorrhage (Dai et al., 2015).

The 2020 Australia New Zealand Neonatal Network dataset shows 2781 infants who meet the criteria for an ROPEE (i.e. <=30⁺⁶ weeks and/or <=1250g) (Chow et al., 2020). Of this group 493 (17.7%) had no ROPEE. Of those that had a ROPEE (2288/2781 infants) 964/2288 (42.1%) had ROP with 204/2288 (8.9%) having the more severe stages 3-5 ROP (Chow et al., 2020).

From this same dataset, 81.9% of eligible infants were screened for ROP (Chow et al., 2020). It is currently unclear as to the full reasons why these unscreened infants did not receive a ROPEE, nor have the details of the demographics, such as the infant’s ethnicity, for this group of infant’s been explored or described. An understanding of these factors requires exploration to ensure that infants needs are met and opportunities for vision sparing interventions are seized. Māori (the Indigenous people of Aotearoa) have higher rates of preterm birth compared to Europeans, and additionally are more likely to experience better health outcomes due to the systemic health system advantages provided to them by colonisation (Edmonds et al., 2021).

For infants who have had a ROPEE, there is evidence indicating that anxiety levels of parents who were not present for the ROPEE had lower levels of anxiety compared to parents who were present (Kara et al., 2021). There were also differences found between parental genders, as the mothers anxiety level were reported as higher if present during the ROPEE compared to the fathers reported anxiety level (Kara et al., 2021). It has been suggested that the gender difference could be associated with the feeling of being unable to protect and comfort their infant during the painful procedure (Kara et al., 2021). To date whānau Māori experiences of ROPEE have yet to be explored.

Research has shown that neonatal intensive care unit (NICU) parents are concerned about the experiences of pain and their infants experience. Research has described that parents would like more information about painful procedures, how they could be involved in managing their infants pain and are concerned about the impact of pain on the parent-infant relationship (Ahmad et al., 2022; Franck et al., 2005). Parents would like to take an active role in pain management and there is evidence to support the importance of parental involvement in this (Palomaa et al., 2016; Skene et al., 2012; Ullsten et al., 2021). There is evidence demonstrating a significant reduction in infant pain scores (such as the Neonatal Infant Pain Scale, Premature Infant Pain Profile) and less infant crying when parents breastfeed and have skin-to-skin contact with their infant (Ullsten et al., 2021). Pain can also be reduced if whānau utilized techniques such as facilitated tucking, holding/swaddling, massage and singing to their child (Ullsten et al., 2021). Whānau Māori experiences of how to best support their infants during painful procedures, including ROPEE, is yet to be explored.

Research Focused on Lived Experiences of Whānau Māori

Within Aotearoa, it has been anecdotally observed that whānau are encouraged by NICU staff to leave their preterm infant while the ophthalmologist and nursing staff carry out the ROPEE. It is thought that whānau are encouraged to leave because the preterm infant often experiences significant distress during the ROPEE, which can in turn could cause distress to whānau, which can cause distress within the NICU staff. Through wānanga (discussions) Māori researchers have identified from whānau Māori who have lived experiences of being in a NICU environment, that whānau wish to experience a closeness with their infant (Adcock et al., 2021). Health care professionals or hospital policies can either support or not augment this connection, which can result in whānau Māori feeling frustrated and traumatised (Adcock et al., 2021).

It is not known if the suggestion for whānau Māori to leave when their infant has ROPEE is supported the whānau, or if there is another option whānau Māori would prefer. It is also not known how whānau Māori feel when their infant has their head touched by multiple staff members for ROPEE, and conversely, how Māori staff feel about this procedure and what tikanga actions staff would like to take to ensure the tapu aspect of touching the infants head is navigated and returned to noa (unrestricted).

There is no published literature on whānau Māori lived experiences of the painful ROPEE in NICU, nor what role whānau could have in pain management. There is a need to explore these experiences to enable clinical contexts to consider this in protocols and procedures within the NICU environment. Indigenous wellbeing and views are essential in health service provision including in Aotearoa which has a foundational obligation under Te Tiriti of Waitangi (foundational Document of Aotearoa). Exploring whānau Māori experiences provides the opportunity to ensure that ROPEE meets whānau needs and their infants and optimising positive health benefits for Māori preterm infants and their whānau during their healthcare journey in NICU.

Aim

The main aim of this research is to investigate and explore whānau Māori lived experiences of the ROPEE in Aotearoa.

The objectives are to explore lived experiences of whānau Māori who were present for the ROPEE and give voice to their tikanga preferences for ROPEE and if they were observed. For whānau Māori who were not present for the ROPEE, the objective is to explore their tikanga preferences for ROPEE, and if known, whether these were observed.

Explanation and Justification of Method

Kaupapa Māori research

This research follows kaupapa Māori (research using Māori knowledge by, with and for Māori) theory and research methodologies (Cram, 2017). The CONSIDER statement (CONSolIDated critERia for strengthening the reporting of health research involving Indigenous Peoples) will be followed in this research, including how the results will be reported (Huria et al., 2019).

Māori health researchers have led the design and implementation of this research to enhance Māori wellbeing and contribute to improved equitable health outcomes. All health researchers identify as Māori, and two researchers have extensive experience in kauapapa Māori research methodologies. Additionally, Māori capability and capacity is built through the scaffolding of researchers, from undergraduate student, early career researcher, and senior researchers forming the research team.

Hui will be conducted by Māori health researchers and will be based on and informed by a Kaupapa Māori principles, for example observing tikanga by having open and closing karakia (blessing) during interviews, enacting whanaungantanga (connection), understanding Māori as Māori, having responsive relationships with participants, upholding manaakitanga (hospitality) by providing participants with resources and support throughout the research process, and giving koha (gift) ($50 voucher) as appreciation of participation and to cover some costs associated with participating (e.g., travel) (Cram, 2017). Māori researchers will have responsive relationships with Māori participants, encourage openness in responses, and enable informed contextualisation during data analysis.

Exploring whānau Māori lived experiences of ROPEE gives voice to whānau Māori and will lead on to discussions about what their views and ideas they have for improving care. This facilitates discussion about potential solutions to support culturally safe care within the NICU during these necessary and invasive examinations. The stories and experiences of whānau Māori can be used to inform and develop interventions to support care.

Research Design, Including Methods, Sampling, and Recruitment

This prospective qualitative research involving semi-structured interviews in hui was chosen enabling whanaungatanga (relationships to be created). This relationship building through whanaungatanga helps create a safe space for kōrero (conversation), and allows for in-depth discussion to occur (Lacey et al., 2011).

Hui questions were developed following review of the literature and robust discussion by the research team. The interview guide was pilot tested with one whānau Māori participant of a preterm infant who has had a ROPEE and this was used for feedback and improvement.

Based on the research teams prior experience of qualitative research and facilitating hui with whānau Māori, a sample size of 10 whānau collectives was determined to provide data for analysis (Guest et al., 2006; Malterud et al., 2015; Zinck et al., 2020). The sample size was pragmatic and considered the limitations of time available and associated costs. It is anticipated that four to six participants will be included in each of the 10 whānau groups.

Data collection will take place in four sites across Aotearoa to provide diverse lived experiences of the ROPEE. Participants will be purposefully recruited at Ōtepoti (Dunedin), Ōtautahi (Christchurch), Te Whananui a Tara (Wellington), and Tāmaki Makau Rau (Auckland; Auckland, Counties Manukau or Waitemata) NICUs. Participants will meet the eligibility criteria if they are whānau of preterm infant of Māori ethnicity (self identified) in keeping with current practices, and whom have had at least one ROPEE. (Statistics New Zealand & Tatauranga, 2017) Ethnicity for the infant is self-identified by their whānau in accordance with StatsNZ.

Participants must be over 14 years of age and have English or Te Reo Māori fluency. Whānau of preterm infants who are not of Māori ethnicity, and who have not had a ROPEE, under 14 years of age with no English or Te Reo Māori fluency will be excluded from this research.

Participants will be recruited by a consent to approach process, and the study will be introduced to whānau, who meet the eligibility criteria, by staff located within each NICU. Participants will be given a participant information sheet, and if they consent, they will be introduced to a member of the research team who will then follow the process for consent. In addition to eligible participants that NICU staff identify, fliers advertising the study will be placed in areas where whānau may congregate (e.g., whānau lounges) facilitating participant self-referral.

Most of the research team are experienced clinicians and will know how to respond to participants if a referral to an external professional is required. If health advice is sought from participants during the interview, they will be referred by the researcher(s) to their health professional (e.g., General Practitioner, paediatric consultant) and/or recommended to look at the Ministry of Health website, or to ring Healthline for advice.

Data Collection

Hui will be held with participants after the consent process has been collected. Researchers will meet with participants and kōrero will occur and recorded for analysis. A semi-structured interview will occur and cover topics such as information given prior to ROPEE, tikanga preferences, as outlined in appendix 1. From the recording a transcript will be made for analysis of themes that emerged during the interview process.

Data Handling/Analysis

Data is valued and treated as taonga, and will be handled in accordance with data governance protocols set out by Te Kahui Raraunga (Māori Data Governance Model) (Kukutai et al., 2023). The seven Data Pou from Te Kahui Raraunga (Māori Data Governance Model); data capacities and workforce development; data infrastructure; data collection; data protection; data access, sharing, and repatriation; data use and reuse, data quality and system integrity; data classification, will inform how all data in this research will be handled and cared for (Kukutai et al., 2023).

Data will be analysed with a decolonisation and transformative approach and to perform this the research group will reflect strengths based and with a Te Ao Māori lens, and consider how the effects of colonisation may affect both the researchers and participants lived experiences (Pihama et al., 2008). This research group will take a transformative approach to ensure the taonga shared is used to enact change for good.

Audio recorded data will be transcribed verbatim by a member of the research team and then entered into NVivo for thematic analysis. Transcripts from hui will be annotated with interpretive notes allowing themes to emerge (Byrne, 2022). Themes will then be analysed using an inductive framework approach by two researchers and reviewed with input from the entire research team. Data will be analysed in a strengths based way, avoiding a deficit or blame approach. Data will be preserved in its original form and not manipulated or taken out of context to tell a narrative that suits the agenda of the research group. The research team will have access to the full dataset and oversee analysis, interpretation, and reporting of results.

Ethics

Ethical approval was given by the University of Otago, Aotearoa New Zealand (H22/136, Nov 2022). Locality approval was given by each site (Dunedin reference 01941, Christchurch reference 22189, Wellington 16 March 2023, Auckland reference 9709). Māori consultation occurred with the Ngāi Tahu Research Committee, University of Otago (Dec 2022), and within each hospital site. The Dunedin based PARent consumer representative group were consulted (ref 01941, Nov 2022). Prospective consent to participate in the study will be obtained from the participants whānau. This study adheres to the tenets of the Declaration of Helsinki.

Informed consent will be obtained by the research nurses, clinical staff, or a member of the research team. Participants may withdraw consent for taking part in this research prior to the hui. Participants may withdraw consent for the collection of data at any time, without providing a reason.

Electronic data will be stored on secure services and access is controlled by a unique user identification (ID) and password. Transcriptions will be de-identified and allocated a study ID, first and last initial and date of birth. Contact and personal information will be stored separately from the interview transcriptions. Identifiable data will not be released to any third party.

At the completion of the study, all electronic data will be permanently digitally archived and accessible only to the research team. All hard copy records digitally scanned will be added to the archive, and then destroyed. Remaining hard copy records will be stored in a locked cabinet in a secure office and will be accessible only to the research team and records will be retained for 10 years.

Dissemination

No identifying information relating to participants will be linked to any publications or presentations of analyses.

Participants will be invited to a online hui to discuss the main findings, and the results discussed. Publications and plain language summaries will be emailed or posted to participants, and Te Whatu Ora and Te Aka Whai Ora staff.

Dissemination of findings will occur at each contributing site with a specific invitation for Māori staff attendance, at conferences, in open access peer reviewed journals, and with relevant decision making bodies.

The student researcher will be encouraged to present findings at conferences and contribute to publications which will foster academic growth. One investigator works clinically in NICU and will use opportunities to translate findings in the workplace. Most of the researchers work in academic roles, and where appropriate, can incorporate main findings into student learning materials.

Following dissemination of findings, it is anticipated that the research findings could be used to inform clinical practice guidelines, and Te Whatu Ora policy and procedures for ROPEE, and potentially inform other aspects of clinical care, and clinical care pathway and practice within the NICU.

Conclusion

This research aims to find previously unpublished information on whānau Māori lived experiences of the often painful ROPEE in NICU, and what role whānau could have in the eye examination. The outputs and impacts of this research is to have positive health benefits for Māori preterm infants and their whānau, increase Māori workforce capacity and capability, and develop interventions to support clinical care for whānau Māori.