‘Tell me a story’: Use of sensory ethnography and co-design process to understand and improve communication and bonding between babies and families in a neonatal intensive care unit

TY - GEN

T1 - ‘Tell me a story’: Use of sensory ethnography and co-design process to understand and improve communication and bonding between babies and families in a neonatal intensive care unit

AU - Grant, Suzanne

AU - Gault, Paul

AU - Lim, Chris

AU - Mountain, Rod

AU - Hoy, Sara

PY - 2024/12/6

Y1 - 2024/12/6

N2 - Background: In the UK, around 60,000 babies are born prematurely (before 37 weeks of pregnancy) each year. Neonatal intensive care units (NICUs) look after babies who are born prematurely as well as fullterm babies who are sick and require intensive support. The length of stay for a premature baby in a NICU ranges from days, weeks to months, with potentially lasting impacts on babies and their families. Research has shown that separation, especially in preterm infants, can impact on their stress levels, as well as their autonomic nervous, neuroendocrine, and immune systems (Ionio et al., 2016). Preterm infants are also at increased risk of feeding difficulties, neurodevelopment delays, and long-term speech and language communication problems (Ibid.). Parents, especially mothers, also miss out on essential bonding time with their baby and have reported feels helplessness, redundancy, and detachment from the caring process, which can lead to long-term problems including anxiety and postnatal depression. Recent studies have shown that hearing a familial voice (e.g. talking, storytelling) can have a positive impact on a baby’s development while in hospital (e.g. improved auditory cortex development) (Harding et al., 2019). Positive interactions between parent and infant can have long-term effects including reinforcing bonding, attachment and intimacy, as well as reducing anxiety and depression. Aim: To use sensory ethnography and co-design to understand and improve communication and bonding between babies and family members in a NICU. Study Design and Methods: The project was carried out over an 8-month period (October 2022-May 2023) in a NICU situated within a medium-sized Scottish hospital. Data collection and analysis were based on the four overlapping phases of the Design Council’s Double Diamond Design Process Model (https://www.designcouncil.org.uk/news-opinion/what-framework-innovation-design-councils-evolveddouble-diamond) and was carried out across two phases. The ‘Discover’ and ‘Define’ phase (Phase 1) aimed to ethnographically develop an in-depth understanding of existing forms of communication in the NICU to ‘Develop’ and ‘Deliver’ a product to address these important communication challenges during Phase 2. Phase 1 (‘Discover’ and ‘Define’) was conducted from October-December 2022. A sensory ethnographic approach was used, which involved the researchers “self-consciously and reflexively attending to the senses” (Pink 2015:7) during the research process. Non-participant observation and shadowing of NICU staff was carried out using the AEIOU Observation Framework (Robinson et al. 1991). Observations focused on the key activities, environment, objects and users relating to baby-family communication, and the interactions between these elements in the NICU. All observations were recorded with permission in fieldwork notebooks and later typed up as full fieldnotes. Semi-structured interviews were additionally carried out with a range of NICU staff (n=5) and families (n=8). With consent, all interviews were audio recorded and transcribed verbatim for analysis. Personas, empathy mapping and journey mapping were also created and integrated with the sensory ethnographic fieldwork data. Data analysis was thematic and involved both iterative-inductive and deductive analysis using NVivo 12 qualitative software and team-based affinity clustering methods. This provided an indepth, multi-sensory understanding of existing communication between families and preterm babies in the NICU environment as data collection progressed. It also enabled the development of new ideas during Phase 2, including the use of parental storytelling via a digital app. Phase 2 (‘Develop’ and ‘Deliver’) was conducted from January – May 2023. A co-design process (Sanders et al. 2010) was used, which involved collaborating with NICU staff, families and a third sector partner called Bliss to progress through generative activities including ideation, concept development and prototyping. A set of different solutions were created that built upon insights from the prior ethnographic fieldwork. The solutions took the form of experience prototypes (Buchenau and Suri, 2000) to show the potential functionality of a digital platform including the behaviours it would enable and aesthetic appropriate for the target audience. A set of short videos and hero images were also created to help communicate the intended user experience of engaging with prototypes. Findings: We begin by presenting our findings from Phase 1, which cut across the following three themes: (1) the strengths, challenges and opportunities of existing communication between preterm babies and families in the NICU environment, including activities, objects, users and their interactions; (2) families’ experiences in the NICU and their practical and emotional consequences, including separation from their baby, communication difficulties, and their lasting impact; and (3) existing support available for families and babies, both physically (e.g. counselling, chaplaincy service) and digitally (e.g. digital apps, social media groups). The outputs from Phase 2 included seven prototypes that used a variety of different approaches for designing a digital platform to playback spoken audio stories for premature babies in the NICU. This considered the user experience from both the families and NICU staff perspective. The families’ interaction involved a mobile app that supported recording, selecting, and listening back to stories and other audio content. The NICU staff’s interaction involved an app designed for a tablet so they could easily manage and control the playback of stories. Different types of physical audio speaker designs and configurations were also proposed for safely attaching to the incubator in the ward. Conclusions: Preterm babies and families experience significant challenges relating to communication and bonding while in the NICU unit, with significant time spent apart. Sensory ethnographic fieldwork enabled us to understand the social context of these challenges from the perspectives of NICU staff and families, and how an app and physical devices could be incorporated into the existing NICU setting. Prototyping a wide array of different solutions made tangible the available options for a digital platform supported by physical devices. The co-design process also fostered a participatory dialogue between families, NICU staff and third sector partners to help create solutions that meet the complex needs of all the involved stakeholders. In this presentation, we reflect on the use of audio stories in the NICU setting and in healthcare more broadly during periods of emotional instability. We also consider the wider empirical and methodological implications of the sensory ethnographic and co-design approaches used in this study and their contributions to design in healthcare settings.

AB - Background: In the UK, around 60,000 babies are born prematurely (before 37 weeks of pregnancy) each year. Neonatal intensive care units (NICUs) look after babies who are born prematurely as well as fullterm babies who are sick and require intensive support. The length of stay for a premature baby in a NICU ranges from days, weeks to months, with potentially lasting impacts on babies and their families. Research has shown that separation, especially in preterm infants, can impact on their stress levels, as well as their autonomic nervous, neuroendocrine, and immune systems (Ionio et al., 2016). Preterm infants are also at increased risk of feeding difficulties, neurodevelopment delays, and long-term speech and language communication problems (Ibid.). Parents, especially mothers, also miss out on essential bonding time with their baby and have reported feels helplessness, redundancy, and detachment from the caring process, which can lead to long-term problems including anxiety and postnatal depression. Recent studies have shown that hearing a familial voice (e.g. talking, storytelling) can have a positive impact on a baby’s development while in hospital (e.g. improved auditory cortex development) (Harding et al., 2019). Positive interactions between parent and infant can have long-term effects including reinforcing bonding, attachment and intimacy, as well as reducing anxiety and depression. Aim: To use sensory ethnography and co-design to understand and improve communication and bonding between babies and family members in a NICU. Study Design and Methods: The project was carried out over an 8-month period (October 2022-May 2023) in a NICU situated within a medium-sized Scottish hospital. Data collection and analysis were based on the four overlapping phases of the Design Council’s Double Diamond Design Process Model (https://www.designcouncil.org.uk/news-opinion/what-framework-innovation-design-councils-evolveddouble-diamond) and was carried out across two phases. The ‘Discover’ and ‘Define’ phase (Phase 1) aimed to ethnographically develop an in-depth understanding of existing forms of communication in the NICU to ‘Develop’ and ‘Deliver’ a product to address these important communication challenges during Phase 2. Phase 1 (‘Discover’ and ‘Define’) was conducted from October-December 2022. A sensory ethnographic approach was used, which involved the researchers “self-consciously and reflexively attending to the senses” (Pink 2015:7) during the research process. Non-participant observation and shadowing of NICU staff was carried out using the AEIOU Observation Framework (Robinson et al. 1991). Observations focused on the key activities, environment, objects and users relating to baby-family communication, and the interactions between these elements in the NICU. All observations were recorded with permission in fieldwork notebooks and later typed up as full fieldnotes. Semi-structured interviews were additionally carried out with a range of NICU staff (n=5) and families (n=8). With consent, all interviews were audio recorded and transcribed verbatim for analysis. Personas, empathy mapping and journey mapping were also created and integrated with the sensory ethnographic fieldwork data. Data analysis was thematic and involved both iterative-inductive and deductive analysis using NVivo 12 qualitative software and team-based affinity clustering methods. This provided an indepth, multi-sensory understanding of existing communication between families and preterm babies in the NICU environment as data collection progressed. It also enabled the development of new ideas during Phase 2, including the use of parental storytelling via a digital app. Phase 2 (‘Develop’ and ‘Deliver’) was conducted from January – May 2023. A co-design process (Sanders et al. 2010) was used, which involved collaborating with NICU staff, families and a third sector partner called Bliss to progress through generative activities including ideation, concept development and prototyping. A set of different solutions were created that built upon insights from the prior ethnographic fieldwork. The solutions took the form of experience prototypes (Buchenau and Suri, 2000) to show the potential functionality of a digital platform including the behaviours it would enable and aesthetic appropriate for the target audience. A set of short videos and hero images were also created to help communicate the intended user experience of engaging with prototypes. Findings: We begin by presenting our findings from Phase 1, which cut across the following three themes: (1) the strengths, challenges and opportunities of existing communication between preterm babies and families in the NICU environment, including activities, objects, users and their interactions; (2) families’ experiences in the NICU and their practical and emotional consequences, including separation from their baby, communication difficulties, and their lasting impact; and (3) existing support available for families and babies, both physically (e.g. counselling, chaplaincy service) and digitally (e.g. digital apps, social media groups). The outputs from Phase 2 included seven prototypes that used a variety of different approaches for designing a digital platform to playback spoken audio stories for premature babies in the NICU. This considered the user experience from both the families and NICU staff perspective. The families’ interaction involved a mobile app that supported recording, selecting, and listening back to stories and other audio content. The NICU staff’s interaction involved an app designed for a tablet so they could easily manage and control the playback of stories. Different types of physical audio speaker designs and configurations were also proposed for safely attaching to the incubator in the ward. Conclusions: Preterm babies and families experience significant challenges relating to communication and bonding while in the NICU unit, with significant time spent apart. Sensory ethnographic fieldwork enabled us to understand the social context of these challenges from the perspectives of NICU staff and families, and how an app and physical devices could be incorporated into the existing NICU setting. Prototyping a wide array of different solutions made tangible the available options for a digital platform supported by physical devices. The co-design process also fostered a participatory dialogue between families, NICU staff and third sector partners to help create solutions that meet the complex needs of all the involved stakeholders. In this presentation, we reflect on the use of audio stories in the NICU setting and in healthcare more broadly during periods of emotional instability. We also consider the wider empirical and methodological implications of the sensory ethnographic and co-design approaches used in this study and their contributions to design in healthcare settings.

KW - neonatal intensive care unit,

KW - preterm baby-family communication

KW - sensory ethnography

KW - co-design

KW - experience prototyping

UR - https://lab4living.org.uk/design4health/

M3 - Conference contribution

VL - 3

SP - 162

EP - 164

BT - Design4Health2024 International Conference

T2 - Design4Health Conference 2024

Y2 - 25 June 2024 through 27 June 2025

ER -