Using information to provide safe care for neonatal care unit patients

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Master Thesis

Using information

to provide safe care for

neonatal care unit patients

Medical staff interprets their use of information and communication technologies

Author: Pia Stjerndorff Gröhn Examiner: Päivi Jokela

Supervisor: Mexhid Ferati Date: 2020-06-30

Course Code: 5IK50E, 30 credits Subject: Informatics

Level: Advanced

Department of Informatics

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“Observe how system into system runs, what other planets circle other suns.”

Alexander Pope, 1733

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3

Abstract

2017 became the beginning of the Childbirth Crisis of Sweden, as a result of underbudgeting and understaffing, creating an environment where patient safety and availability was questioned. Additionally, information and communication technology rapidly take a larger role in the field of healthcare, nourishing new solutions for old processes.

This explorative research was conducted to answer how information and communication technologies, and communication techniques, are used and could be used to provide safe care for patients. This study was conducted with 10 participants working as medical staff at a Swedish neonatal care unit. The medical staff who participated consisted of registered nurses, certified pediatric nurses, pediatric nursing assistants, and one nursing assistant. The approach of this research was through system thinking in the tradition of soft systems thinking. The data collection was performed with a combination of semi-structured interviews and card sorting. The collected data were processed, organized, and interpreted with the three c’s of analysis and thematic analysis. The results of this study are complemented by rich pictures.

The empirical findings of this study describe a neonatal care unit known at its hospital to be the one unit holding the largest number of different devices. The medical staff at the researched NCU are using information and communication technology in a combination together with specific communication techniques, to create an understanding of their patients’

conditions. The study connects a state of safe care to the training and knowledge of the information and communication technologies, and communication techniques used at the neonatal care unit. The combination of the information and communication technologies, and communication techniques used at the NCU are vital tools, conclusive to the medical staff when providing safe care for patients. This study provides an insight into one Swedish neonatal care unit, based on the interpretations of its medical staff.

Keywords

Information and Communication Technology, ICT, Safe Care, Neonatal Care Unit, NCU, Healthcare, Sweden, Communication Techniques, Explorative Research, Systems Thinking, Interpretive Paradigm, Semi-Structured Interview, Card Sorting, The Three C’s of Analysis, Thematic Analysis, Rich Picture

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List of Abbreviations

ALPS-Neo Astrid Lindgren and Lund Children's Hospitals Pain and Stress Assessment Scale for Preterm and sick Newborn Infants

NA Nursing Assistant

APGAR Appearance, Pulse, Grimace, Activity, Respiration CPAP Continues Positive Airway Pressure

CPN Certified Pediatric Nurse ECG Electrocardiography EEG Electroencephalography EHR Electronic Health Record

HOSP The Register of Qualified Healthcare Professionals (a Swedish abbreviation from

“Registret över legitimerad hälso- och sjukvårdspersonal”) ICT Information and Communication Technology

ISBAR Information, Situation, Background, Assessment, Recommendation NCU Neonatal Care Unit

NIDCAP Neonatal Individualized Developmental Care and Assessment PNA Pediatric Nursing Assistant

RN Registered Nurse

SALAR The Swedish Association of Local Authorities and Regions SBAR Situation, Background, Assessment, Recommendation SSM Soft Systems Thinking

TA Thematic Analysis

WHO World Health Organization

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List of Figures

Figure 1. The Thesis Dispositions 9

Figure 2. Illustration of the Inspirational Cards Used in this Research 24 Figure 3. The Use of ISBAR for Information Exchange between Different Shifts 36 Figure 4. Collaboration with EEG Data Between Different Regions 39 Figure 5. The Outcome of Card Sorting Based on Number of Times Sorted 48

List of Tables

Table 1. The Acronyms of SBAR and ISBAR 17

Table 2. Division of Participants by Education 22

Table 3. The Phases of Thematic Analysis 25

Table 4. Findings from Card Sorting 42

Table 5. Detailed Findings from Card Sorting 63

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Introduction - 7

1 Introduction

The field of healthcare is rapidly evolving, with intense development this century. Within the last couple of decades, the changes have been quick and of great organizational significance, with information and communication technologies (ICT) entering the field and nourishing new solutions and new tools for old processes. The goal of implementing modern tools is often to improve, for example concerning safety, accessibility, or a faster result. Even with good intentions in mind, the development within the field of healthcare creates a challenge for the medical staff to learn, unlearn and relearn, to continuously be liable for providing safe care to the patients.

1.1 Background

Healthcare is a field that generally is arranged all over the world, preferably available for those in need of it. Obstetrics is a healthcare field relating to the care and treatment of women during pregnancy, the childbirth, and the period directly following childbirth (Wilder-Smith, 2003). Neonatal care is a varied field related to obstetrics, specializing in newborns delivered prematurely and in need of standard newborn care, but also specializing on fully developed newborns in need of care to survive (Hugill, 2016). In Sweden, healthcare is organized through regions, with national guidelines but regional variations, which also includes obstetric and neonatal care.

The situation in Swedish obstetric and neonatal care in 2017, when the data collection of this study was performed, was vulnerable as a result of under budgeting and understaffing. This created a situation where management got required to close down delivery rooms, which happened several times in 2017 (Jodenius, 2017a; b). The situation is referred to as the Childbirth Crisis, a term frequently used by the newspaper Aftonbladet when conducting their review about the Swedish obstetric care during the Spring of 2017 (Aftonbladet, 2020). The Swedish Minister for Health and Social Affairs commented the investigation by stating obstetric care as unequal over the country, as well as the patients’ safety for obstetric care being inadequate (Mårtensson, 2017). At this time, the amount of medical staff was decreasing and the capacity of providing safe care for patients became a question regarding in which region one lived when in need of obstetric care.

A group of Swedish researchers wrote a debate article for a daily newspaper proclaiming that registered nurses are leaving their profession due to the lack of conditions to take action as they are educated to do, or to even attend to their patients in the manner they recognize as correct (Asp et al., 2017). registered nurses leaving their professions became another amplifier of the Childbirth Crisis, impairing patient safety, reducing the available rooms further.

The infrastructure of a hospital does not change overnight, but with a decreased amount of available medical staff the number of available rooms for the care of patients decreases as well. This is a consequence of hospital rooms only being available if there are medical staff available to attend to it. One registered nurse highlights that in a crisis where rooms are closed down it also affects the rooms in which closest of kin was intended (Jarl, 2016). In the Convention on the Rights of the Child, it is said that the interest of the child should be the lead to all decisions concerning children. The Convention on the Rights of the Child has been applied in Sweden since 1990 and became a Swedish law in 2020 (Regeringskansliet [Government Offices of Sweden], 2017b; Regeringskansliet [Government Offices of Sweden]

and Regeringen [the Government], 2020).

Even with a less amount of available rooms, the scheduling of the medical staff needs to be altered to ensure patient safety. Alterations of the schedules makes the medical staff feel

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8 - Introduction

deprived of their right to recuperation (Jodenius, 2017a; Myllylä, 2017). During the Summer of 2017 medical staff reported to not be provided time to have breaks during their shifts, commented as “unworthy” by the Minister for Health and Social Affairs at the time (Westin and Silverberg, 2017).

About every 10^th childbirth in Sweden results in either a prematurely born or a fully developed newborn in need of observation and care (Swedish Neonatal Quality Register, 2018b). These childbirths result in new patients to a neonatal care unit (NCU). One significant aspect of differentiating prematurely born from fully developed newborns is their ability to resist an infection (Magnusson Österberg, 2019). The ways of defending oneself against infections as a fully developed newborn might not work for a prematurely born. Prematurely born could also have a different development in their way of acting and learn, compared to a fully developed newborn, which changes their way of using body language and communication (Magnusson Österberg, 2019). When an otherwise healthy prematurely born is catching up to the evolution of a fully developed newborn it is no longer in need of care and will be discharged from the NCU. The medical staff in the care of patients at an NCU requires communicating with their patients, whom not even their guardians can interpret yet. This creates a state where data provided through ICT or knowledge through specifically developed communication techniques possibly can be used to understand or anticipate a situation.

The Childbirth Crisis in Sweden occurs in a time where most people walk around with a smartphone, equivalent to a computer, in their pocket. ICTs develop rapidly, with smartwatches said to detect diabetes and smart socks being able to monitor heart rates (Lundberg, 2018; Anon, 2020). ICT could be part in amplifying the environment where medical staff is alleviated of time-consuming data collections and reports. This could, in theory, create a window of time where medical staff would be able to take action as they are educated to do, contributing to an environment of safe care.

1.2 Research Aim and Questions

This study aims to understand how ICT in healthcare is being used by medical staff when caring for patients. The research is focused on how the use of ICT could be part of providing safe care.

With the intention of this study in consideration, the research questions are stated as follows:

• How is information and communication technology used by medical staff in neonatal care to provide safe care for patients?

• How could the use of information and communications technology by medical staff in neonatal care provide safe care for patients?

1.3 Research Scope and Limitations

To address the aim of this study, it is essential to describe what ICT is. To be able to provide safe care by using ICT, as stated with the research aim, it is crucial to distinguish what safe care implies. As this study has a chosen area of healthcare in which medical staff are the actors using ICT, the scope of this study also includes the environment at which medical staff is performing their profession.

The delicate state in which NCU patients are, combined with media reports of a Childbirth Crisis in Swedish obstetric care, was the starting point of this study, as well as the beginning of the limitation. This study is limited to Sweden, specifically to one (1) region of Sweden in which one (1) neonatal care unit constitutes the research setting where the data collection is performed. Medical staff at this specific NCU are the only participants of this study, with the

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Introduction - 9 significant limitation that all participation took place during their working hours on occasions where they voluntarily chose to spend their breaks or quiet times for this study.

The empirical findings and analysis of this study are based on sessions of semi-structured interviews in combination with card sorting. The sessions were conducted in an area where the medical staff does not use ICT, nor is engaging with their patients. The understanding of how ICT in healthcare is used to provide safe care for patients is based on the interpretations of the participants and is therefore consequently limited for the researcher.

1.4 The Thesis Dispositions

The remainder of this document is structured as follows, illustrated with Figure 1:

Figure 1. The Thesis Dispositions

Chapter 7: Conclusion sums up the research and looks to the future.

Chapter 6: Discussion puts the empirical findings and analysis (chapter 5) against the literature review (chapter 3) and into a relevant context.

Chapter 5: Empirical Findings and Analysis presents analyzed data collected at the research setting (chapter 2) and processed with the methodology (chapter 4).

Chapter 4: Methodology establishes the theoretical framework which is applied when collecting and analyzing the empirical findings.

Chapter 3: Literature Review presents the foundation of science and research positioning this study in context to what is already known.

Chapter 2: Research Setting establishes the environment at which the empirical findings and analysis (chapter 5) is collected.

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10 - Research Setting

2 Research Setting

This chapter establishes the environment at which the empirical findings of the conducted research are found. The research setting generates a general understanding of the researched area. This chapter is initiated from the broader perspective of healthcare in Sweden, narrowed down to neonatal care in Sweden, and finalized by presenting the neonatal care unit of this study.

2.1 Healthcare in Sweden

Sweden is a democracy where the citizens elect politicians through three elections, assigning the elected to govern the country. One of these elections is about the governance on a regional level where the public healthcare is controlled (SALAR, 2019a). An additional sector of private healthcare is also an accessible alternative to healthcare in Sweden, divided amongst private companies with or without a contract signed with the respective region (The National Board of Health and Welfare, 2019b).

Sweden is divided into 20 regions, with national guidelines but regional variations, all financed through taxes and government grants (SALAR, Kullander and Langlet, 2019). The National Board of Health and Welfare has appointed the task of creating the national guidelines with the means of contributing to patients receiving a high standard of healthcare (The National Board of Health and Welfare, 2019a). Swedish healthcare is subsequently supervised by the Health and Social Care Inspectorate (The Health and Social Care Inspectorate, 2015). Moreover, The Swedish Association of Local Authorities and Regions (SALAR) represents and advocates for local governments in Sweden, where regions are relevant parts (SALAR, 2019b) (see section 3.5.1 Swedish Organizations Focusing on Healthcare, p.17). Collaborations occur between the regions, for example when it comes to specialized healthcare.

There is an effort made to create a cohesive electronic health record (EHR) in Sweden, positioning the patient security against the patient’s integrity (SALAR, 2014) (see section 3.3.2 Electronic Health Records, p.15). For instance, laws are implemented to regulate how records of personal and medical data of patients should be registered and protected, simultaneously providing access to patient data about oneself (The Swedish Data Protection Authority, 2018). Access rights and control regulate that only medical staff who require access to data or information to provide healthcare are allowed to take part in it (SALAR, 2014). These efforts and more are made as part of the vision to make Sweden the best country in the world to use the possibilities of digitalization and e-health by the year 2025 (Regeringskansliet [Government Offices of Sweden] and SALAR, 2016).

2.2 Neonatal Care in Sweden

About every 10^th childbirth in Sweden results in either a prematurely born or a fully developed newborn in need of observation and care (Swedish Neonatal Quality Register, 2018b). These childbirths require neonatal care and are preferably given a bed at a neonatal care unit (NCU). With 115 416 living childbirths in Sweden in 2017, 10% implies that approximately 11 542 of them became patients in need of a bed at an NCU (Statistiska Centralbyrån, 2018). About 3847 of the NCU patients in Sweden 2017 required neonatal care as a consequence of being premature born (SALAR, 2018d). A minority of the NCU patients required neonatal intensive care for several months, while the majority only needed a short period of neonatal care (Swedish Neonatal Quality Register, 2018b).

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Research Setting - 11 In 2017, newborns became patients at any of the Swedish NCUs at 11 767 unique occasions with an average hospital period of about 11 days (Swedish Neonatal Quality Register, 2018a).

Note that this statement implies the ability of an individual newborn becoming a patient at a Swedish NCU more than once. According to the Swedish Neonatal Register, neonatal care was conducted at 38 hospitals in Sweden in 2017, with 486 beds available of which 436.5 beds (90%) were characterized as accessible and 132.5 beds (27%) classified as beds of neonatal intensive care (Swedish Neonatal Quality Register, 2018a). Given an undifferentiated perspective on these facts, the accessible neonatal care beds indicate about 27 patients per bed throughout the calendar year. A number indicating that the average stay period results in small margins for flexibility to work with.

Due to the Childbirth Crisis (see section 1.1 Background, p.7), the Swedish Government decided to increase the budgeting for obstetric care with 400 million Swedish crowns a year;

2017-2019; to shortly after put in an extra focus of 500 million Swedish crowns for the years of 2017 and 2018, which got increased even further with one (1) billion Swedish crowns a year for the years of 2018-2022 (Regeringskansliet [Government Offices of Sweden], 2017a).

SALAR later reported that the growth of medical staff employment for obstetric care was recognized after the investment (SALAR, 2018a). The additional money is intended to be used for strengthening the staff density and to improve the work environment in obstetric care to enable the performance of safe care (Regeringskansliet [Government Offices of Sweden], 2017a).

The chain of care, at which neonatal care is involved, was studied in 2017 to result in a report stating areas to further develop and improve for the Swedish obstetric care (SALAR, 2018e).

The result of the report is since then used as a foundation to provide safe care (SALAR, 2018b) (see section 3.1 Safe Care, p.13). Neonatal care in Sweden was studied and areas of improvements were mapped in 2018, also this was a mission provided to SALAR (SALAR, 2018d). The mapping of the Swedish neonatal care showed that it can be reinforced by an enriched knowledge base and further supported of existing guidelines, to prevent differences of the quality between different regions (SALAR, 2018d) (see section 3.5.1 Swedish Organizations Focusing on Healthcare, p.17).

2.3 The Neonatal Care Unit of this Study

The NCU of this study had 6 available beds in the Spring of 2017. This is a decrease from the usual 10 available beds, due to an influenza virus preventing the possibility to keep more than one bed available for each room.

Since neonatal care in Sweden has regional differences, but in its basis is provided on the same premises, it is not relevant to reveal at what Swedish hospital or region this study took place. To provide a context to the number of beds at this NCU: this region of Sweden is one of the five (5) regions with the fewest patients at their NCU in 2017 (Swedish Neonatal Quality Register, 2018a). The NCU of this study is moreover part of the public healthcare and is the only available NCU in its region. This NCU shares corridor with the only delivery ward of the region.

When this study was initialized, the intention was to conduct it at an NCU somewhere in Sweden, and therefore the contact initially went to different NCUs through the contact information found on official hospital websites. A request was sent out to several NCUs with a consent form including contact information attached (see Appendix A, p.60). The requests were successful, and a relationship was established with one NCU manager, to conduct this study at that specific NCU.

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12 - Research Setting

Actors at the NCU of this study are primarily of the following three kinds: medical staff, patients, and close of kin to the patient. Medical staff at the NCU consists of about 20 registered nurses (RAs) and 20 nursing assistants. Some of these medical staff are further educated in a specialization, where pediatrics is the most common as well as the most relevant. There are three medical physicians specialized in pediatrics closely connected to the NCU, but primary placed at other units as their official workplaces. Medical physicians conduct daily rounds at the NCU and at least one medical physician is intended to always be available if needed. The patients at the NCU are newborns delivered premature, fully developed newborns in need of care, or a combination of both. A patient can be prematurely born and placed at this NCU to get standard newborn care. Close of kin is acting as an available adult, when allowed to be present at the NCU. A close of kin is not allowed to act as medical staff nor be treated as a patient at the NCU.

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Literature Review - 13

3 Literature Review

This chapter introduces terms, fields, technologies, and techniques this study is built upon.

Initially, safe care and information systems with related information and communication technology is described. Healthcare is connected to the different terms and fields with examples of technologies and communication techniques, concluded with organizations focusing on the progression of healthcare.

3.1 Safe Care

The term safe care is a matter of perspective with common denominators. The perspective is created with good intentions, to improve care in a safe environment, with the support of a variety of actors.

Teamwork and effective communication techniques are seen as fundamental when working towards providing safe care for patients, as well as when delivering high-quality care (Leonard, Graham and Bonacum, 2004). Leonard, Graham, and Bonacum point out failure in communication as a common cause resulting in harming patients, emphasizing the importance of standardized communication processes being used. When discussing standardized communication tools, SBAR is designated as an example of an effective tool (Leonard, Graham and Bonacum, 2004) (see section 3.4 Communication Techniques in Healthcare, p.16). SBAR is an acronym created of the words Situation (S), Background (B), Assessment (A) and Recommendation (R), developed by the US Navy to a tool used to standardizing important communication (Marshall, Harrison and Flanagan, 2008; Leonard, Graham and Bonacum, 2004). Leonard, Graham, and Bonacum furthermore lift cultural change as central when transforming care from something provided by an individual to something provided by a collaborative team (Leonard, Graham and Bonacum, 2004). The change needs to become a part of the work where those involved see the benefit of their effort of change instead of a source of more work (Leonard, Graham and Bonacum, 2004). Communication is continuously pointed out as an important source to provide safe care, where the implementation of electronic health record (EHR) to be meaningfully used is discussed, as EHRs has the potential to “promote quality, safety and efficiency” (Stimson and Botruff, 2017, p.53) (see section 3.3.1 Information and Communication Technology in Healthcare p.14). Safe care is onwards connected to patient safety.

Patient safety within the care provided through regions in Sweden is seen as a decreasing occurrence with the potential of further development (SALAR, 2018b). The same report showed that 8% of the examined care sessions in 2017 resulted in damages to the patient, creating an approximately twice as long time in care for those affected (SALAR, 2018b).

SALAR has further found that it is quite uncharted how much patient injuries there is within the neonatal care (SALAR, 2018d).

3.2 Information Systems

Informatics is the field of studying information and information systems, a term with its origin in Europe (Dahlbom, 1996). An information system is a system with the purpose to serve or help people to take action (Checkland and Scholes, 1990). Information systems and information technology are generally commingled, but the latter is rather a combination of technology and devices used to handle data or information (Checkland and Holwell, 1998). A kind of device used to handle data or information could be equipped with a sensor that can monitor changes and generate data from an object, person, environment, or system (see section 3.3.1 Information and Communication Technology in Healthcare p.14). The device

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14 - Literature Review

preferably is connected to a network, to send the changed data and combine it with relatable data to make it useful.

The three eras is simplified, although criticized for “being over-simplistic”, and widely accepted way used to describe how IT in organizations has evolved during the past 60 years by dividing that time into three eras; data processing, management information systems, and strategic information systems (Peppard and Ward, 2016, p.15, 2004, p.168).

The era of data processing has its core in improving operational efficiency, which was much about creating automated processes (Peppard and Ward, 2016). The era of management information systems has its core in increasing management effectiveness by making information part of decision making (Peppard and Ward, 2016). The era of strategic information systems is based on improving competitiveness by changing the way of doing business and is about finding “opportunities for competitive advantage through IT” with an information system (IS) strategy approach to shape business strategies (Peppard and Ward, 2016, p.15, 2004, p.167). The era of strategic information systems is built from the two earlier eras of data processing and management information systems together by improving operational efficiency and increase management effectiveness, the result tends to end up to an improved competitiveness for the organization. The simplicity of the three eras is probably what it became popular as it is a large time frame of great digital evolvements described with only three different cores of how IS/IT was foremost used, while describing an interdependence between the cores.

3.3 Information and Communication Technology

Information and communication technology (ICT) is a basic term used in the field of informatics and information systems. ICT is a broad term and could be any technology used to support “information gathering, processing, distribution and use” of data (Beynon-Davies, 2013, pp.484–485). The term is sometimes used instead of the term information technology to

“recognize the convergence of traditional computer technology and telecommunications” as it could be hardware, software, or communication networks of a broad variation (Peppard and Ward, 2016, p.3). One can also define it as a computer-based information system, as a set of procedures and resources used to collect and transform data (Boddy, Boonstra and Kennedy, 2008).

3.3.1 Information and Communication Technology in Healthcare

ICT in healthcare is an interdisciplinary field of informatics and healthcare concerning clinical management support, tools for healthcare planning, support for the division of resources, decision- and strategic tools (AbouZahr and Boerma, 2005). ICTs in healthcare can be used to support the medication management process to make the handling of medication more efficient and safe, including e-prescriptions, electronic health records, virtual doctor appointments, health apps, and medical equipment (Hammar, 2014; Swedish eHealth Agency, 2019). The term has a lot of potential since it is based on the broad term of ICT (Regeringskansliet [Government Offices of Sweden] and SALAR, 2016). The use of ICTs in healthcare is also known as e-health, confirmed by the description of WHO as “eHealth is the use of information and communication technologies (ICT) for health” (World Health Organization, 2020b).

It is believed that the use of ICT in healthcare can relieve the increasing demands in healthcare, improve patient safety and quality of healthcare (Ludwick and Doucette, 2009).

However, the role of ICT in healthcare is commonly known to improve the processes supporting healthcare.

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Literature Review - 15 3.3.2 Electronic Health Records

An electronic health record (EHR) is a computer-based record system implemented to replace the previously used paper-based Medical Record System (Weber-Jahnke and Mason-Blakley, 2011). EHRs have the same purpose as the paper-based Medical Record System; to keep track of data and information of patients.

The EHR is broadly used, often as the place collecting data from other techniques. EHRs are part of ensuring a certain quality of modern healthcare systems by storing, processing, interpreting, and exchanging patient records within relevant organizations (Weber-Jahnke and Mason-Blakley, 2011). The use of modern EHRs has been proven to be of aid in early identification of disorder, which can lead to a correct and early treatment (Stimson and Botruff, 2017). EHRs are far developed and deeply implemented in Swedish healthcare (see section 2.1 Healthcare in Sweden, p.10).

The tool of EHR has on the other hand also been an inconvenience on many occasions, as there have been cases of it being a distraction of care (Stimson and Botruff, 2017), and repeatedly cases of medical staff accessing records of others rather than the relevant patient records. There are known problems of EHRs with inaccurate, unreliable and in other way unusable data as a source to create information or knowledge about a patient’s situation (Shoenbill et al., 2014). These problems could even become a source of harm. Kwon and Johnson emphasize that the rise of EHR adaption together with a system mix by the means of sharing information, has caused a state of “ill-designed and poorly integrated clinical workflow” (Kwon and Johnson, 2018, p.1043).

3.3.3 Sensors

Another ICT used in healthcare is the sensor, seen in several various devices. A sensor is a part of a system that can monitor changes and generate data from an object, person, environment, or system and connect that input to a kind of network to send signals of the changed data (De Roeck et al., 2012).

An example of sensors being used in healthcare is the Artemis or Artemis framework (see section 3.5.2 Artemis use of Sensors for Neonatal Intensive Healthcare, p.18). Another example is the use of pulse oximetry, which is a non-invasive technology used for monitoring arterial oxygenation in patients and thought to be ubiquitous enough to be called the fifth vital sign (Seeley, McKenna and Hood, 2015). Pulse oximetry uses red and infrared light through a source of arterial blood; as placed on a finger, toe or ear; and “uses a sensor to detect the amount of light absorbed by oxygenated and non-oxygenated blood” (Seeley, McKenna and Hood, 2015, p.3539). Within neonatal care, pulse oximetry is often used on feet, but sometimes also on the head or hand of the patient. Although pulse oximetry is popular with its low price and ubiquity, there is a low amount of evidence that the use of the technique is improving the care of a patient (Seeley, McKenna and Hood, 2015). The technique is further known to be used and interpreted incorrectly which could be obstructive for the care of the patient.

The goal when using a sensor could be to take action when data collected is processed into a specific value, for example, setting off an alarm when a temperature is too high or when there is an unexpected movement. When connected to a database and a server, data collected by a sensor could be transmitted and stored to be accessed both real-time and historically, and with a connection to the internet, the sensor data could be stored on a server and accessed through a web interface (Gaver et al., 2013). To have data collected and stored through a web interface makes the possibilities even greater since this enables the data to be shared without geographical limitations. Although, when widening the access of data, the importance of

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privacy gets greater as this also could make the data accessible by unauthorized people. The way of using sensors to collect data makes them suitable for the internet of things and the concept of big data.

3.3.4 Blood Analytics

A third kind of ICT used in healthcare is in the field of blood analytics, used to measure blood pressure and bilirubin, for example. Blood pressure is measured with the purpose to improve the quality of patient treatment by confirming cause complaint of headache, knowing the effect of a treatment, or determining if a patient has hypertension (Ando, 2014). Although blood pressure is common to measure at hospitals, it is problematic to fulfill the different time-spans connected to different purposes of this technique in general, where a time-span of 1 second could be relevant in cases whilst a time-span of two (2) times a day, once a week, month or year is relevant in other cases (Ando, 2014). Alternative techniques used to monitor blood pressure are many and of both non-invasively (static measure) and invasive (dynamic measure) kinds with complex variables to interpret (McLean, 2015).

3.3.5 Electrodes

A fourth kind of ICT used in healthcare is the use of electrodes, as with measuring Electrocardiography (ECG). ECG is measured with Electrocardiogram Machines, which is considered to be a reliable technique to determining acute myocardial infarctions and is used to determine other possible heart diseases or conditions as quickly as possible with its base in interpretation and recognition of patterns (Ševcík et al., 2015).

3.4 Communication Techniques in Healthcare

The term of communication techniques is the way of communicating, which can be defined as

“the accomplishment of meaning between actors” (Beynon-Davies, 2013, p.480). It does not need to be connected to any technology but can instead be seen as a tool of how to communicate.

There are several well-known communication techniques used in healthcare, as the importance of providing correct and fast information often is of great importance. SBAR and ISBAR are two closely connected and established techniques. When studying how healthcare professionals were taught to communicate with each other, research examined how different groups used the tool of ISBAR when trained to use the technique while control groups were taught how to use ISBAR after sessions where it was used, where there was no difference in the asked help from the different groups (Marshall, Harrison and Flanagan, 2009). Marshall, Harrison, and Flanagan point out that their research shows that the use of ISBAR is likely to improve communication in a clinical environment (Marshall, Harrison and Flanagan, 2009).

When studying what different emotions can do for the work of medical staff, Mentis Reddy and Rosson shows that expression of emotions could be used to coordinate and work more efficiently (Mentis, Reddy and Rosson, 2010).

The technique of SBAR is described as an effective tool providing a predictable structure to communication, flexible to use at any clinical domain, obstetrics mentioned as one of them (Leonard, Graham and Bonacum, 2004). ISBAR is based on SBAR, with a fifth word, placed in front of the tool, to describe what needs to be performed: identify (I) (Marshall, Harrison and Flanagan, 2008). Identify means “the identification of the caller, the receiver of the information, the patient being discussed and the clinical location of the patient” (Marshall, Harrison and Flanagan, 2008, p.861). Table 1 states the explanation of the acronyms of SBAR

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Literature Review - 17 and ISBAR and depicts which questions or statements according to Leonard, Graham, and Bonacum (2004) and Marshall, Harrison, and Flanagan (2008) needs to be answered.

Table 1. The Acronyms of SBAR and ISBAR The Acronyms of

SBAR and ISBAR

Leonard, Graham and Bonacum

Marshall, Harrison and Flanagan

I: identify - identify self; name, position,

location and who you are talking to; or identify patient; name, age, sex, location

S: situation What is going on with the patient?

state purpose; if urgent - say so

B: background What is the clinical background, or context?

tell the story; current problem, relevant history, relevant examination, relevant test results, management

A: assessment What do I think the problem is? state what you think is going on R: recommendation

or request

What would I do to correct it?

(recommendation)

state request (request)

3.5 Organizations Focusing on the Progression of Healthcare

Healthcare, in general, is arranged all over the world, with larger organizations such as the World Health Organization (WHO) being a central point for collaboration for the majority of the world. The WHO states that they are “Working for better health for everyone, everywhere”, “building a better, healthier future for people all over the world”, collaborating with 194 member states within the United Nations system (World Health Organization, 2020a). The organization has an eHealth Unit, acknowledging “the potential of digital technologies to play a major role in improving public health, where delegates agreed on a resolution on digital health (World Health Organization, 2020b).

3.5.1 Swedish Organizations Focusing on Healthcare

When it comes to investigate and possibly develop care in Sweden, The Swedish Association of Local Authorities and Regions (SALAR) are often involved (see section 2.1 Healthcare in Sweden, p.10).

SALAR is a membership organization representing and advocating for local government in Sweden, the largest employer organization in the country representing more than one million people (SALAR, n.d.). All municipalities and regions in Sweden are members of SALAR (SALAR, n.d.), where the regions are of interest for this study (SALAR, n.d.). The mission of SALAR is to provide better conditions for regions with the vision to develop the welfare system (SALAR, 2019b). The organization is politically driven with missions as signing central collective agreements and create conditions for local solutions, and the development of regional and local democracy (SALAR, n.d., n.d.b).

SALAR speaks on behalf of its members with other organizations like the European Union and with the Swedish Government and Parliament, making sure to be part of both regional and European politics (SALAR, n.d.). SALAR is continuously involved in carrying out many of the investments decided by the Swedish Government or Parliament, and publishing reports

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about them. The neonatal care took part in investments and is focusing on “the chain of care”

for pregnancies and delivery, intending to support the care before, during, and after pregnancies (SALAR, 2018a; d). These investments were further developed in 2019 when the mission was to investigate childbirth and women's health to develop more equal care in Sweden (SALAR and Estling, 2018).

SALAR published the healthcare report, describing the current development in Swedish healthcare based on data from hospitals. The report covers information about availability, costs, experiences from patients, the Swedish population’s view on healthcare, and actual medical results (SALAR, 2018b). The medical results published are divided into different themes and groups of diseases that are comparing the care of the different regions against each other (SALAR, 2018b). In 2018, SALAR especially highlighted that more nurses with specializations were needed for the neonatal care in several Swedish regions (SALAR, 2018c;

d).

Another organization focusing on developing healthcare in Sweden, especially focusing on ICT in healthcare, is the Swedish eHealth Agency. The Swedish eHealth Agency is tasked to

“lead and coordinate government e-health initiatives” (Swedish eHealth Agency, 2019). They aim to use knowledge of technology and digitalization to improve the care and health of Sweden by leading, driving and working in partnership, creating structures and monitoring quality, and providing services (Swedish eHealth Agency, 2019). The Agency is in charge of digital services such as Healthcare Guide 1177 and the medicine check e-service, the two services used by all regions in Sweden. Recent numbers show that of all medical prescriptions for humans in Sweden, 99% are digital, found in the medicine check e-service provided by the Swedish eHealth Agency (Swedish eHealth Agency, 2019).

3.5.2 Artemis use of Sensors for Neonatal Intensive Healthcare

The University of Ontario has an established group of researchers working with Artemis (see section 3.3.3 Sensors, p.15). Artemis is a platform used to support storage and online real- time analytics of patient’s physiological data streams; that was first implemented for monitoring of neonatal intensive healthcare units in Canada 2009, where sensors were used to detect early signs of infections (University of Ontario Institute of Technology, 2014). Artemis' use of sensors in combination with neonatal care was the initial spark this study took growth from.

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Methodology - 19

4 Methodology

This chapter establishes the theoretical framework, which is used when collecting and analyzing data for this study. The approach of this explorative research is through systems thinking in the tradition of soft systems thinking. The data collection is performed with a combination of semi-structured interviews and card sorting. The collected data is processed with the three c’s of analysis, and thematic analysis is applied to organize and interpret the data. The results of this study are complemented with rich pictures and presented in the chapter empirical findings and analysis.

A methodology is “a set of principles which underpin the action undertaken in a specific situation” (Checkland and Poulter, 2006, p.195). The methodology can also be described as “a theoretically informed, and confined, framework for research” (Clarke and Braun, 2017, p.297).

4.1 Research Paradigm

When conducting research, there are two fundamental research paradigms or techniques to follow: the qualitative; using words as data; and the quantitative; using numbers as data (Braun and Clarke, 2013; Merriam and Tisdell, 2016). The qualitative seeks to describe and investigate the meaning of occurring phenomena in the social world, whereas quantitative tends to seek the frequency (Al-Busaidi, 2008). The qualitative research paradigm is used when collecting and analyzing data with methods as interviewing and observation, focusing on understanding and interpreting data (Merriam and Tisdell, 2016). The term of qualitative research is used when referring to both the techniques used when collecting or analyzing data, as well as the paradigm, “the application of qualitative techniques within a qualitative paradigm” (Braun and Clarke, 2013, p.4).

The decision of paradigm implies differences of the desired findings where there are ways of creating relatable findings with another selection of paradigm, most probably a theory-testing deductive one, whereas qualitative “tends to be theory generating and inductive” (Braun and Clarke, 2013, p.4).

The qualitative research paradigm is chosen as most appropriate for this study on the premise that the interpretation of the data is key to produce the empirical findings. Would this study instead have been planned as quantitative research, the techniques used to explore safe care for patients at the neonatal care unit (NCU) would need to be interpreted through other forms of data, for example with patient information from medical records. With this example of using medical records, special ethical approvals, as well as the approval and voluntariness from the legal guardians of the patients, would be needed, and redundant private data would be exposed for the researcher. Further on, the paradigm is chosen for practical reasons as qualitative paradigms tend to create rich data with few participants whereas quantitative paradigms could create broad data when a large number of participants are at hand (Braun and Clarke, 2013).

Within the information systems research scope, there are three additional dominant paradigms: the positivist, the interpretive, and the critical paradigm lifting positivism as the most dominant (Orlikowski and Baroudi, 1991; Walsham, 2012). Walsham noted that the interpretive research has become “more important in the IS field than it was in the early 1990s” referring to Orlikowski and Baroudi (Walsham, 2006, p.320), concluding that

“interpretive research is here to stay in the field of IS” (Walsham, 2006, p.329).

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20 - Methodology

This study is positioned to the interpretive paradigm, building on people creating and associating their own “subjective and intersubjective meanings as they interact with the world around them” (Orlikowski and Baroudi, 1991, p.5). Walsham (1993) describes the interpretive methods to be based on human knowledge of reality as a social construction created by human actors. With that stated, this study explores the subjective reality of the participants from the perspective of the researcher.

4.2 Systems Thinking

Systems thinking in the tradition of soft systems thinking is chosen as the approach for this study to identify and explore the complexity of the organization studied, with a systems perspective.

Systems thinking is an approach where different parts of a system are observed as pieces of a complex system, and in order, to understand the piece one needs to understand the richness of its system (De Savigny, Adam and World Health Organization, 2009). When understanding how a system is constructed; what behaviors, interactions, linkages, and relationships that coexist and together create and shape the fullness of a system; the systems thinking approach could anticipate coming happenings (De Savigny, Adam and World Health Organization, 2009). Through systems thinking it is thought that a system or an organization is shaped and affected by its environment (Jokela, Karlsudd and Östlund, 2008). The approach is used when exploring the nature of relationships connecting the different pieces, the interactions created by the connections as well as the space around them (De Savigny, Adam and World Health Organization, 2009). The mindset of systems thinking is to process how pieces of a system relate and connect within the larger system surrounding it.

Systems thinking is described as an approach to problem-solving where problems take the setting as “part of a wider, dynamic system” (De Savigny, Adam and World Health Organization, 2009, p.33). The problems, in the chosen words of an intervention, is described as part of a whole with “Every intervention, from the simplest to the most complex, has an effect on the overall system, and the overall system has an effect on every intervention” (De Savigny, Adam and World Health Organization, 2009, p.19). The problem of systems thinking in the health sector is described as generating an understanding of “what works, for whom and under what circumstances” (De Savigny, Adam and World Health Organization, 2009, p.80). Systems thinking could be used to strengthen systems, for example when designing or evaluating them. An example highlighted by World Health Organization is how systems thinking frames a problem and sees patterns and behaviors that have made an impact over time, in parallel to only focusing on individual events (De Savigny, Adam and World Health Organization, 2009). This makes the approach of systems thinking appropriate for explorative research as this.

The approach is used to identify challenges and explore these with a systems perspective to make potential solutions viewable. To manage a problem could be an attempt to making progress towards a better state of the situation. This creates a constant task, since the evolvement of a situation generates a new version of the system which could be the foundation of future actions. The complexity of the approach amplifies the complexity of an organization as a system, which illuminates a range of effects and potential signs of progress (De Savigny, Adam and World Health Organization, 2009).

4.2.1 Hard and Soft Systems Thinking

Within systems thinking a tradition of hard systems thinking and soft systems thinking has evolved. Sushil (2017) describes the difference between the two as hard systems thinking

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Methodology - 21 being focused on optimization, while soft systems thinking is focused on learning (Sushil, 2017). Checkland (1999) described it more profoundly with hard systems thinking assumes systems exist in the world and “can be engineered to achieve declared objectives”

(Checkland, 1999b, p.52). He continued describing soft systems thinking assumes that the world is problematic and more complex and “the process of enquiry into the world can itself be engineered as a learning system” where the soft systems thinking also has the option to implement the tradition of hard systems thinking (Checkland, 1999b, p.52). The standpoint of this study is within the area of soft systems thinking.

Soft systems methodology (SSM) is an action-oriented methodology, an organized way of thinking about perceived situations to constructively make way for improvements (Checkland and Poulter, 2006). SSM is a process of guiding action of managing real-world problem situations and is relevant when taking “purposeful action to change real situations constructively” (Checkland and Scholes, 1990, p.5). Checkland and Scholes use the expression “experience-based knowledge” to describe how human beings are “taking purposeful action in relation to our experience of the situations we find ourselves in, and the knowledge (shared or individual) which that experience yields” (Checkland and Scholes, 1990, p.3). The use of SSM structures a situation and enables the performer to “make best use of their intellectual capabilities” (Checkland and Poulter, 2006, p.196). The methodology is proper to use in human situations where “’(this) could/should be improved’, or ‘something needs to be done about this’, or ‘I feel uneasy about this, it needs looking at’” (Checkland and Poulter, 2006, p.196).

4.3 Data Collection

The data collection of this study was performed in March 2017 with a total of 10 participants, each one given an approximately 30-minute-long individual sessions with the researcher. The sessions consisted of a combination of semi-structured open question interview and card sorting including inspiration cards. The participants were either registered nurses or nursing assistants, all employed at the researched NCU where these sessions also took place. The choice to meet the participants at their workplace was a decision mainly based on the wish of not disrupting them more than necessary when collecting data during their working shifts yet without the intention to observe (see section 2.3 The Neonatal Care Unit of this Study, p.11).

All participants took part in and signed the form of consent (see Appendix A, p.60, for an unsigned version) and approved the audio recording of the session.

The semi-structured interview was chosen as the main qualitative data collection method for this study, a choice with its foundation found both in the researcher’s own experience and the common practice of interviews as a tool within the academic subject of informatics. Card sorting is a less common form of data collection with, against interviewing, much smaller examples of use found in the literature. Leverage of card sorting is the small number of examples where it has been used and the variations in which it has been used. This makes card sorting into a flexible tool to adjust freely, specifically to this project A disadvantage of card sorting having few examples of use if the risk of not turning out to generate data in a useful form.

When the contact with the NCU manager was established, the researcher was invited to a staff meeting at the NCU. At this staff meeting, the medical staff was asked, by the researcher, to voluntarily participate in this study, approved by the NCU manager. The data collection sessions through semi-structured interviews and card sorting (see section 4.3.3 Semi- Structured Interview, p.23, and 4.3.4 Card Sorting, p.23) were intentionally conducted in a room connected to the NCU. To conduct the data collection sessions outside of the working

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22 - Methodology

environment of the participants was a mutual agreement between the researcher and the NCU manager based on two premises:

1. to not come in any contact with either patient, their closest of kin, or medical data about the patients. To avoid this was also to maintain the ethical considerations of applying for an Advisory Ethical Review from Etikkommittén Sydost, that otherwise would be needed (see section 4.6 Ethical Considerations, p.27).

2. to create a space for the participants where they could feel comfortable speaking unreservedly without disturbance or censorship due to other medical staff, other participants, or the presence of the NCU manager.

The researcher was permitted to use the room for 10 workdays, available at her own choice.

The medical staff at the NCU was permitted to participate in the research during their planned working shifts, voluntarily and only when it was possible to have one (1) registered nurse less or one (1) nursing assistant less close to the patients. Participating medical staff always had a device for communication on hand with them, to be able to be contacted and if they were needed at the NCU.

4.3.1 Preparation for Participants

Before participating in this study, all medical staff was informed about what information and communication technology (ICT) is. ICT is not a commonly known concept and was therefore specifically introduced to the participants as:

The technology used to support collecting, processing, distribution, or use of data. ICT could be hardware or software. It can be technologies used to communicate and it can be technologies used to manage collected data.

The participants were additionally provided the consent form (see Appendix A, p.60) and their entitlement to withdraw their participation and given content without giving any cause was emphasized (see section 4.6 Ethical Considerations, p.27).

4.3.2 Participants

The participants of this study consist of six (6) registered nurses and four (4) nursing assistants (see Table 2. Division of Participants by Education, p.22).

A registered nurse in Sweden has completed a post-secondary nursing education and obtained a Swedish License in healthcare (The National Board of Health and Welfare, 2020). In Sweden an registered nurse is part of the Register of Qualified Healthcare Professionals, abbreviated as HOSP in Swedish; Registret över legitimerad hälso- och sjukvårdspersonal (The National Board of Health and Welfare, 2019c). The register comprises those who have obtained a license in the field of healthcare. A nursing assistant in Sweden is unlicensed, therefore excluded from HOSP, but holds a professional diploma from secondary education (Skolverket [The Swedish National Agency for Education], 2018).

Within the group of participating registered nurses two (2) are certified pediatric nurses, while pediatric nursing assistant is a specialization for three (3) participating nursing assistants.

From the total of participants, 50% are specialized in pediatrics.

Table 2. Division of Participants by Education

Registered Nurse Nursing Assistant

General 4 1

Specialized in Pediatrics 2 3

Total 6 4

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Methodology - 23 4.3.3 Semi-Structured Interview

To interview is to have an exchange of learning through conversation (Crang and Cook, 2007), where the researcher asks the participants relevant questions for the research, and the participants answer these questions as they see fit. There are different types of interviews, commonly categorized by the amount of structure necessary (Merriam and Tisdell, 2016).

For this study, the interviews were semi-structured, meaning that the researcher used a structured base for the conversation but the interview itself was in an open-ended form to the sense that the participant is allowed to answer broadly (Crang and Cook, 2007; Merriam and Tisdell, 2016). The flexibility, together with the explorative perspective of this study, are typical characteristics of a semi-structured interview (Merriam and Tisdell, 2016). This form of data collection provides the participant’s space to interpret their working environment and the use of ICTs in their worldviews. To conduct semi-structured interviews implies that the prepared questions of the interview guide (Appendix A, p.60) might have switched places during the session, or more than one (1) question is answered at the same time (Crang and Cook, 2007). This chosen type of interviewing style allowed the researcher to respond and guide the interview if needed, hand in hand with the use of card sorting throughout the data collection session. All interviews were recorded with one (1) main and one (1) backup recording device combined with notes on paper by the researcher.

4.3.4 Card Sorting

Participatory Design is an approach with its base in the principle of making it possible to the users of a technology to have an impact, a say, on the design of said technology (Robertson and Simonsen, 2013). Card sorting is used within Participatory Design research as a method to “visualise processes, express priorities or inspire creative processes” (van der Velden and Mörtberg, 2014, p.14) and could be helpful when a researcher wants participants to engage or make something clear by sorting it out.

Since there is a great number of different types of card methods, Wölfel and Merritt (2013) define card-based tools within five (5) dimensions. The five dimensions are: (1) intended purpose and scope, (2) duration of use and placement in design process, (3) system or methodology of use, (4) customization, and (5) formal qualities (Wölfel and Merritt, 2013, p.480). Within these five (5) dimensions different cards are categorized based on factors. One factor is about where in the design process the cards are used and how. Another factor is if the cards can be used anytime, as needed or at a specific occasion in the design process. Further, one factor used to categorize the different cards are how some cards are used unbound of rules while others have specific steps to be followed. Lastly, one factor is if the cards are intended to be used only as they are created or if it is allowed to add new ones while using them (Wölfel and Merritt, 2013).

The cards used in this study are called inspirational cards and were provided to the participants on the same occasion as the interview, in the beginning of the data collection session. The purpose and undertaking of the card sorting used were to rank the importance of different ICT solutions or tools used at the NCU concerning safe care, by sorting the cards.

The cards used were of a total of seven (7) while each of them represents one (1) ICT solution or tool used at an NCU, (see, Figure 2, p.24). The content on four (4) of the cards was based on information found through the literature review, in combination with considerations from the NCU manager. These four (4) cards were considered to include ICTs and communication techniques conclusive to use at the NCU to provide safe care. Three (3) of the cards were provided to the participants empty at every individual session, with the encouragement to add new ICTs or communication techniques to the sorting while using them.

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24 - Methodology

The card sorting had the purpose to create an understanding of how important different ICTs and communication techniques in use at this NCU are, according to the participants. The card sorting had its intended use to create a second foundation for the data collection session to evolve or grow with, along with the semi-structured interview.

Figure 2. Illustration of the Inspirational Cards Used in this Research

4.4 Data Analysis

The aim of analyzing the collected data is to interact with it and to create a sense of understanding based on the gathering (Lichtman, 2013). The data collection of this study is coded, categorized and put into concepts with the support of the three c’s of analysis, then organized and interpreted through thematic analysis (TA). The data collection is presented as part of the empirical findings and analysis (see chapter 5 Empirical Findings and Analysis, p.29). The presentation of the empirical findings and analysis of this study is supplemented and visualized with rich pictures.

4.4.1 Three C’s of Analysis

The collected data of this study was initially processed with the three c’s of analysis in mind, as presented by Lichtman: (1) coding, (2) categorizing, and (3) concepts (Lichtman, 2013).

The three c’s of analysis consists of six (6) steps, which do not need to be followed in its presented order and can even be used as part of an iterative process. The six (6) steps are: (1) initial coding, (2) revisiting initial coding, (3) developing an initial list of categories, (4) modifying the initial list, (5) revisiting the categories, (6) moving from categories to concepts (Lichtman, 2013). This process was initially performed as a preparation before commencing the TA. In addition, the three c’s of analysis was used parallel to the TA, as some data was revisited on several turns to be process into a concept where the TA could identify a relevant pattern for the research.

4.4.2 Thematic Analysis

Thematic analysis (TA) is a method used on qualitative data for “identifying, analysing, and interpreting patterns of meaning (‘themes’)” (Clarke and Braun, 2017, p.297). A theme is meant to capture and enclose “something important about the data in relation to the research question”, representing a pattern or meaning from the collected data, favorably capturing important parts concerning the research question (Braun and Clarke, 2006, p.82). With TA, codes are generated from the collected data and used to create these themes or “patterns of meaning”, which creates a framework for presenting the data as information (Clarke and

Using information to provide safe care for neonatal care unit patients

Master Thesis