narrative approach in qualitative research

Narrative Analysis 101

Everything you need to know to get started

By: Ethar Al-Saraf (PhD)| Expert Reviewed By: Eunice Rautenbach (DTech) | March 2023

If you’re new to research, the host of qualitative analysis methods available to you can be a little overwhelming. In this post, we’ll  unpack the sometimes slippery topic of narrative analysis . We’ll explain what it is, consider its strengths and weaknesses , and look at when and when not to use this analysis method. 

Overview: Narrative Analysis

• What is narrative analysis (simple definition)
• The two overarching approaches  
• The strengths & weaknesses of narrative analysis
• When (and when not) to use it
• Key takeaways

What Is Narrative Analysis?

Simply put, narrative analysis is a qualitative analysis method focused on interpreting human experiences and motivations by looking closely at the stories (the narratives) people tell in a particular context.

In other words, a narrative analysis interprets long-form participant responses or written stories as data, to uncover themes and meanings . That data could be taken from interviews, monologues, written stories, or even recordings. In other words, narrative analysis can be used on both primary and secondary data to provide evidence from the experiences described.

That’s all quite conceptual, so let’s look at an example of how narrative analysis could be used.

Let’s say you’re interested in researching the beliefs of a particular author on popular culture. In that case, you might identify the characters , plotlines , symbols and motifs used in their stories. You could then use narrative analysis to analyse these in combination and against the backdrop of the relevant context.

This would allow you to interpret the underlying meanings and implications in their writing, and what they reveal about the beliefs of the author. In other words, you’d look to understand the views of the author by analysing the narratives that run through their work.

The Two Overarching Approaches

Generally speaking, there are two approaches that one can take to narrative analysis. Specifically, an inductive approach or a deductive approach. Each one will have a meaningful impact on how you interpret your data and the conclusions you can draw, so it’s important that you understand the difference.

First up is the inductive approach to narrative analysis.

The inductive approach takes a bottom-up view , allowing the data to speak for itself, without the influence of any preconceived notions . With this approach, you begin by looking at the data and deriving patterns and themes that can be used to explain the story, as opposed to viewing the data through the lens of pre-existing hypotheses, theories or frameworks. In other words, the analysis is led by the data.

For example, with an inductive approach, you might notice patterns or themes in the way an author presents their characters or develops their plot. You’d then observe these patterns, develop an interpretation of what they might reveal in the context of the story, and draw conclusions relative to the aims of your research.

Contrasted to this is the deductive approach.

With the deductive approach to narrative analysis, you begin by using existing theories that a narrative can be tested against . Here, the analysis adopts particular theoretical assumptions and/or provides hypotheses, and then looks for evidence in a story that will either verify or disprove them.

For example, your analysis might begin with a theory that wealthy authors only tell stories to get the sympathy of their readers. A deductive analysis might then look at the narratives of wealthy authors for evidence that will substantiate (or refute) the theory and then draw conclusions about its accuracy, and suggest explanations for why that might or might not be the case.

Which approach you should take depends on your research aims, objectives and research questions . If these are more exploratory in nature, you’ll likely take an inductive approach. Conversely, if they are more confirmatory in nature, you’ll likely opt for the deductive approach.

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Strengths & Weaknesses

Now that we have a clearer view of what narrative analysis is and the two approaches to it, it’s important to understand its strengths and weaknesses , so that you can make the right choices in your research project.

A primary strength of narrative analysis is the rich insight it can generate by uncovering the underlying meanings and interpretations of human experience. The focus on an individual narrative highlights the nuances and complexities of their experience, revealing details that might be missed or considered insignificant by other methods.

Another strength of narrative analysis is the range of topics it can be used for. The focus on human experience means that a narrative analysis can democratise your data analysis, by revealing the value of individuals’ own interpretation of their experience in contrast to broader social, cultural, and political factors.

All that said, just like all analysis methods, narrative analysis has its weaknesses. It’s important to understand these so that you can choose the most appropriate method for your particular research project.

The first drawback of narrative analysis is the problem of subjectivity and interpretation . In other words, a drawback of the focus on stories and their details is that they’re open to being understood differently depending on who’s reading them. This means that a strong understanding of the author’s cultural context is crucial to developing your interpretation of the data. At the same time, it’s important that you remain open-minded in how you interpret your chosen narrative and avoid making any assumptions .

A second weakness of narrative analysis is the issue of reliability and generalisation . Since narrative analysis depends almost entirely on a subjective narrative and your interpretation, the findings and conclusions can’t usually be generalised or empirically verified. Although some conclusions can be drawn about the cultural context, they’re still based on what will almost always be anecdotal data and not suitable for the basis of a theory, for example.

Last but not least, the focus on long-form data expressed as stories means that narrative analysis can be very time-consuming . In addition to the source data itself, you will have to be well informed on the author’s cultural context as well as other interpretations of the narrative, where possible, to ensure you have a holistic view. So, if you’re going to undertake narrative analysis, make sure that you allocate a generous amount of time to work through the data.

When To Use Narrative Analysis

As a qualitative method focused on analysing and interpreting narratives describing human experiences, narrative analysis is usually most appropriate for research topics focused on social, personal, cultural , or even ideological events or phenomena and how they’re understood at an individual level.

For example, if you were interested in understanding the experiences and beliefs of individuals suffering social marginalisation, you could use narrative analysis to look at the narratives and stories told by people in marginalised groups to identify patterns , symbols , or motifs that shed light on how they rationalise their experiences.

In this example, narrative analysis presents a good natural fit as it’s focused on analysing people’s stories to understand their views and beliefs at an individual level. Conversely, if your research was geared towards understanding broader themes and patterns regarding an event or phenomena, analysis methods such as content analysis or thematic analysis may be better suited, depending on your research aim .

Let’s recap

In this post, we’ve explored the basics of narrative analysis in qualitative research. The key takeaways are:

• Narrative analysis is a qualitative analysis method focused on interpreting human experience in the form of stories or narratives .
• There are two overarching approaches to narrative analysis: the inductive (exploratory) approach and the deductive (confirmatory) approach.
• Like all analysis methods, narrative analysis has a particular set of strengths and weaknesses .
• Narrative analysis is generally most appropriate for research focused on interpreting individual, human experiences as expressed in detailed , long-form accounts.

If you’d like to learn more about narrative analysis and qualitative analysis methods in general, be sure to check out the rest of the Grad Coach blog here . Alternatively, if you’re looking for hands-on help with your project, take a look at our 1-on-1 private coaching service .

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Thanks. I need examples of narrative analysis

Here are some examples of research topics that could utilise narrative analysis:

Personal Narratives of Trauma: Analysing personal stories of individuals who have experienced trauma to understand the impact, coping mechanisms, and healing processes.

Identity Formation in Immigrant Communities: Examining the narratives of immigrants to explore how they construct and negotiate their identities in a new cultural context.

Media Representations of Gender: Analysing narratives in media texts (such as films, television shows, or advertisements) to investigate the portrayal of gender roles, stereotypes, and power dynamics.

Where can I find an example of a narrative analysis table ?

Please i need help with my project,

how can I cite this article in APA 7th style?

please mention the sources as well.

My research is mixed approach. I use interview,key_inforamt interview,FGD and document.so,which qualitative analysis is appropriate to analyze these data.Thanks

Which qualitative analysis methode is appropriate to analyze data obtain from intetview,key informant intetview,Focus group discussion and document.

I’ve finished my PhD. Now I need a “platform” that will help me objectively ascertain the tacit assumptions that are buried within a narrative. Can you help?

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Using narrative analysis in qualitative research

Last updated

7 March 2023

Reviewed by

Jean Kaluza

After spending considerable time and effort interviewing persons for research, you want to ensure you get the most out of the data you gathered. One method that gives you an excellent opportunity to connect with your data on a very human and personal level is a narrative analysis in qualitative research. 

Master narrative analysis

Analyze your qualitative data faster and surface more actionable insights

• What is narrative analysis?

Narrative analysis is a type of qualitative data analysis that focuses on interpreting the core narratives from a study group's personal stories. Using first-person narrative, data is acquired and organized to allow the researcher to understand how the individuals experienced something. 

Instead of focusing on just the actual words used during an interview, the narrative analysis also allows for a compilation of data on how the person expressed themselves, what language they used when describing a particular event or feeling, and the thoughts and motivations they experienced. A narrative analysis will also consider how the research participants constructed their narratives.

From the interview to coding , you should strive to keep the entire individual narrative together, so that the information shared during the interview remains intact.

Is narrative analysis qualitative or quantitative?

Narrative analysis is a qualitative research method.

Is narrative analysis a method or methodology?

A method describes the tools or processes used to understand your data; methodology describes the overall framework used to support the methods chosen. By this definition, narrative analysis can be both a method used to understand data and a methodology appropriate for approaching data that comes primarily from first-person stories.

• Do you need to perform narrative research to conduct a narrative analysis?

A narrative analysis will give the best answers about the data if you begin with conducting narrative research. Narrative research explores an entire story with a research participant to understand their personal story.

What are the characteristics of narrative research?

Narrative research always includes data from individuals that tell the story of their experiences. This is captured using loosely structured interviews . These can be a single interview or a series of long interviews over a period of time. Narrative research focuses on the construct and expressions of the story as experienced by the research participant.

• Examples of types of narratives

Narrative data is based on narratives. Your data may include the entire life story or a complete personal narrative, giving a comprehensive account of someone's life, depending on the researched subject. Alternatively, a topical story can provide context around one specific moment in the research participant's life. 

Personal narratives can be single or multiple sessions, encompassing more than topical stories but not entire life stories of the individuals.

• What is the objective of narrative analysis?

The narrative analysis seeks to organize the overall experience of a group of research participants' stories. The goal is to turn people's individual narratives into data that can be coded and organized so that researchers can easily understand the impact of a certain event, feeling, or decision on the involved persons. At the end of a narrative analysis, researchers can identify certain core narratives that capture the human experience.

What is the difference between content analysis and narrative analysis?

Content analysis is a research method that determines how often certain words, concepts, or themes appear inside a sampling of qualitative data . The narrative analysis focuses on the overall story and organizing the constructs and features of a narrative.

What is the difference between narrative analysis and case study in qualitative research?

A case study focuses on one particular event. A narrative analysis draws from a larger amount of data surrounding the entire narrative, including the thoughts that led up to a decision and the personal conclusion of the research participant. 

A case study, therefore, is any specific topic studied in depth, whereas narrative analysis explores single or multi-faceted experiences across time. ​​

What is the difference between narrative analysis and thematic analysis?

A thematic analysis will appear as researchers review the available qualitative data and note any recurring themes. Unlike narrative analysis, which describes an entire method of evaluating data to find a conclusion, a thematic analysis only describes reviewing and categorizing the data.

• Capturing narrative data

Because narrative data relies heavily on allowing a research participant to describe their experience, it is best to allow for a less structured interview. Allowing the participant to explore tangents or analyze their personal narrative will result in more complete data. 

When collecting narrative data, always allow the participant the time and space needed to complete their narrative.

• Methods of transcribing narrative data

A narrative analysis requires that the researchers have access to the entire verbatim narrative of the participant, including not just the word they use but the pauses, the verbal tics, and verbal crutches, such as "um" and "hmm." 

As the entire way the story is expressed is part of the data, a verbatim transcription should be created before attempting to code the narrative analysis.

Video and audio transcription templates

• How to code narrative analysis

Coding narrative analysis has two natural start points, either using a deductive coding system or an inductive coding system. Regardless of your chosen method, it's crucial not to lose valuable data during the organization process.

When coding, expect to see more information in the code snippets.

• Types of narrative analysis

After coding is complete, you should expect your data to look like large blocks of text organized by the parts of the story. You will also see where individual narratives compare and diverge.

Inductive method

Using an inductive narrative method treats the entire narrative as one datum or one set of information. An inductive narrative method will encourage the research participant to organize their own story. 

To make sense of how a story begins and ends, you must rely on cues from the participant. These may take the form of entrance and exit talks. 

Participants may not always provide clear indicators of where their narratives start and end. However, you can anticipate that their stories will contain elements of a beginning, middle, and end. By analyzing these components through coding, you can identify emerging patterns in the data.

Taking cues from entrance and exit talk

Entrance talk is when the participant begins a particular set of narratives. You may hear expressions such as, "I remember when…," "It first occurred to me when…," or "Here's an example…."

Exit talk allows you to see when the story is wrapping up, and you might expect to hear a phrase like, "…and that's how we decided", "after that, we moved on," or "that's pretty much it."

Deductive method

Regardless of your chosen method, using a deductive method can help preserve the overall storyline while coding. Starting with a deductive method allows for the separation of narrative pieces without compromising the story's integrity.

Hybrid inductive and deductive narrative analysis

Using both methods together gives you a comprehensive understanding of the data. You can start by coding the entire story using the inductive method. Then, you can better analyze and interpret the data by applying deductive codes to individual parts of the story.

• How to analyze data after coding using narrative analysis

A narrative analysis aims to take all relevant interviews and organize them down to a few core narratives. After reviewing the coding, these core narratives may appear through a repeated moment of decision occurring before the climax or a key feeling that affected the participant's outcome.

You may see these core narratives diverge early on, or you may learn that a particular moment after introspection reveals the core narrative for each participant. Either way, researchers can now quickly express and understand the data you acquired.

• A step-by-step approach to narrative analysis and finding core narratives

Narrative analysis may look slightly different to each research group, but we will walk through the process using the Delve method for this article.

Step 1 – Code narrative blocks

Organize your narrative blocks using inductive coding to organize stories by a life event.

Example: Narrative interviews are conducted with homeowners asking them to describe how they bought their first home.

Step 2 – Group and read by live-event

You begin your data analysis by reading through each of the narratives coded with the same life event.

Example: You read through each homeowner's experience of buying their first home and notice that some common themes begin to appear, such as "we were tired of renting," "our family expanded to the point that we needed a larger space," and "we had finally saved enough for a downpayment."

Step 3 – Create a nested story structure

As these common narratives develop throughout the participant's interviews, create and nest code according to your narrative analysis framework. Use your coding to break down the narrative into pieces that can be analyzed together.

Example: During your interviews, you find that the beginning of the narrative usually includes the pressures faced before buying a home that pushes the research participants to consider homeownership. The middle of the narrative often includes challenges that come up during the decision-making process. The end of the narrative usually includes perspectives about the excitement, stress, or consequences of home ownership that has finally taken place. 

Step 4 – Delve into the story structure

Once the narratives are organized into their pieces, you begin to notice how participants structure their own stories and where similarities and differences emerge.

Example: You find in your research that many people who choose to buy homes had the desire to buy a home before their circumstances allowed them to. You notice that almost all the stories begin with the feeling of some sort of outside pressure.

Step 5 – Compare across story structure

While breaking down narratives into smaller pieces is necessary for analysis, it's important not to lose sight of the overall story. To keep the big picture in mind, take breaks to step back and reread the entire narrative of a code block. This will help you remember how participants expressed themselves and ensure that the core narrative remains the focus of the analysis.

Example: By carefully examining the similarities across the beginnings of participants' narratives, you find the similarities in pressures. Considering the overall narrative, you notice how these pressures lead to similar decisions despite the challenges faced. 

Divergence in feelings towards homeownership can be linked to positive or negative pressures. Individuals who received positive pressure, such as family support or excitement, may view homeownership more favorably. Meanwhile, negative pressures like high rent or peer pressure may cause individuals to have a more negative attitude toward homeownership.

These factors can contribute to the initial divergence in feelings towards homeownership.

Step 6 – Tell the core narrative

After carefully analyzing the data, you have found how the narratives relate and diverge. You may be able to create a theory about why the narratives diverge and can create one or two core narratives that explain the way the story was experienced.

Example: You can now construct a core narrative on how a person's initial feelings toward buying a house affect their feelings after purchasing and living in their first home.

Narrative analysis in qualitative research is an invaluable tool to understand how people's stories and ability to self-narrate reflect the human experience. Qualitative data analysis can be improved through coding and organizing complete narratives. By doing so, researchers can conclude how humans process and move through decisions and life events.

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Home » Narrative Analysis – Types, Methods and Examples

Narrative Analysis – Types, Methods and Examples

Table of Contents

Narrative Analysis

Definition:

Narrative analysis is a qualitative research methodology that involves examining and interpreting the stories or narratives people tell in order to gain insights into the meanings, experiences, and perspectives that underlie them. Narrative analysis can be applied to various forms of communication, including written texts, oral interviews, and visual media.

In narrative analysis, researchers typically examine the structure, content, and context of the narratives they are studying, paying close attention to the language, themes, and symbols used by the storytellers. They may also look for patterns or recurring motifs within the narratives, and consider the cultural and social contexts in which they are situated.

Types of Narrative Analysis

Types of Narrative Analysis are as follows:

Content Analysis

This type of narrative analysis involves examining the content of a narrative in order to identify themes, motifs, and other patterns. Researchers may use coding schemes to identify specific themes or categories within the text, and then analyze how they are related to each other and to the overall narrative. Content analysis can be used to study various forms of communication, including written texts, oral interviews, and visual media.

Structural Analysis

This type of narrative analysis focuses on the formal structure of a narrative, including its plot, character development, and use of literary devices. Researchers may analyze the narrative arc, the relationship between the protagonist and antagonist, or the use of symbolism and metaphor. Structural analysis can be useful for understanding how a narrative is constructed and how it affects the reader or audience.

Discourse Analysis

This type of narrative analysis focuses on the language and discourse used in a narrative, including the social and cultural context in which it is situated. Researchers may analyze the use of specific words or phrases, the tone and style of the narrative, or the ways in which social and cultural norms are reflected in the narrative. Discourse analysis can be useful for understanding how narratives are influenced by larger social and cultural structures.

Phenomenological Analysis

This type of narrative analysis focuses on the subjective experience of the narrator, and how they interpret and make sense of their experiences. Researchers may analyze the language used to describe experiences, the emotions expressed in the narrative, or the ways in which the narrator constructs meaning from their experiences. Phenomenological analysis can be useful for understanding how people make sense of their own lives and experiences.

Critical Analysis

This type of narrative analysis involves examining the political, social, and ideological implications of a narrative, and questioning its underlying assumptions and values. Researchers may analyze the ways in which a narrative reflects or reinforces dominant power structures, or how it challenges or subverts those structures. Critical analysis can be useful for understanding the role that narratives play in shaping social and cultural norms.

Autoethnography

This type of narrative analysis involves using personal narratives to explore cultural experiences and identity formation. Researchers may use their own personal narratives to explore issues such as race, gender, or sexuality, and to understand how larger social and cultural structures shape individual experiences. Autoethnography can be useful for understanding how individuals negotiate and navigate complex cultural identities.

Thematic Analysis

This method involves identifying themes or patterns that emerge from the data, and then interpreting these themes in relation to the research question. Researchers may use a deductive approach, where they start with a pre-existing theoretical framework, or an inductive approach, where themes are generated from the data itself.

Narrative Analysis Conducting Guide

Here are some steps for conducting narrative analysis:

• Identify the research question: Narrative analysis begins with identifying the research question or topic of interest. Researchers may want to explore a particular social or cultural phenomenon, or gain a deeper understanding of a particular individual’s experience.
• Collect the narratives: Researchers then collect the narratives or stories that they will analyze. This can involve collecting written texts, conducting interviews, or analyzing visual media.
• Transcribe and code the narratives: Once the narratives have been collected, they are transcribed into a written format, and then coded in order to identify themes, motifs, or other patterns. Researchers may use a coding scheme that has been developed specifically for the study, or they may use an existing coding scheme.
• Analyze the narratives: Researchers then analyze the narratives, focusing on the themes, motifs, and other patterns that have emerged from the coding process. They may also analyze the formal structure of the narratives, the language used, and the social and cultural context in which they are situated.
• Interpret the findings: Finally, researchers interpret the findings of the narrative analysis, and draw conclusions about the meanings, experiences, and perspectives that underlie the narratives. They may use the findings to develop theories, make recommendations, or inform further research.

Applications of Narrative Analysis

Narrative analysis is a versatile qualitative research method that has applications across a wide range of fields, including psychology, sociology, anthropology, literature, and history. Here are some examples of how narrative analysis can be used:

• Understanding individuals’ experiences: Narrative analysis can be used to gain a deeper understanding of individuals’ experiences, including their thoughts, feelings, and perspectives. For example, psychologists might use narrative analysis to explore the stories that individuals tell about their experiences with mental illness.
• Exploring cultural and social phenomena: Narrative analysis can also be used to explore cultural and social phenomena, such as gender, race, and identity. Sociologists might use narrative analysis to examine how individuals understand and experience their gender identity.
• Analyzing historical events: Narrative analysis can be used to analyze historical events, including those that have been recorded in literary texts or personal accounts. Historians might use narrative analysis to explore the stories of survivors of historical traumas, such as war or genocide.
• Examining media representations: Narrative analysis can be used to examine media representations of social and cultural phenomena, such as news stories, films, or television shows. Communication scholars might use narrative analysis to examine how news media represent different social groups.
• Developing interventions: Narrative analysis can be used to develop interventions to address social and cultural problems. For example, social workers might use narrative analysis to understand the experiences of individuals who have experienced domestic violence, and then use that knowledge to develop more effective interventions.

Examples of Narrative Analysis

Here are some examples of how narrative analysis has been used in research:

• Personal narratives of illness: Researchers have used narrative analysis to examine the personal narratives of individuals living with chronic illness, to understand how they make sense of their experiences and construct their identities.
• Oral histories: Historians have used narrative analysis to analyze oral histories to gain insights into individuals’ experiences of historical events and social movements.
• Children’s stories: Researchers have used narrative analysis to analyze children’s stories to understand how they understand and make sense of the world around them.
• Personal diaries : Researchers have used narrative analysis to examine personal diaries to gain insights into individuals’ experiences of significant life events, such as the loss of a loved one or the transition to adulthood.
• Memoirs : Researchers have used narrative analysis to analyze memoirs to understand how individuals construct their life stories and make sense of their experiences.
• Life histories : Researchers have used narrative analysis to examine life histories to gain insights into individuals’ experiences of migration, displacement, or social exclusion.

Purpose of Narrative Analysis

The purpose of narrative analysis is to gain a deeper understanding of the stories that individuals tell about their experiences, identities, and beliefs. By analyzing the structure, content, and context of these stories, researchers can uncover patterns and themes that shed light on the ways in which individuals make sense of their lives and the world around them.

The primary purpose of narrative analysis is to explore the meanings that individuals attach to their experiences. This involves examining the different elements of a story, such as the plot, characters, setting, and themes, to identify the underlying values, beliefs, and attitudes that shape the story. By analyzing these elements, researchers can gain insights into the ways in which individuals construct their identities, understand their relationships with others, and make sense of the world.

Narrative analysis can also be used to identify patterns and themes across multiple stories. This involves comparing and contrasting the stories of different individuals or groups to identify commonalities and differences. By analyzing these patterns and themes, researchers can gain insights into broader cultural and social phenomena, such as gender, race, and identity.

In addition, narrative analysis can be used to develop interventions that address social and cultural problems. By understanding the stories that individuals tell about their experiences, researchers can develop interventions that are tailored to the unique needs of different individuals and groups.

Overall, the purpose of narrative analysis is to provide a rich, nuanced understanding of the ways in which individuals construct meaning and make sense of their lives. By analyzing the stories that individuals tell, researchers can gain insights into the complex and multifaceted nature of human experience.

When to use Narrative Analysis

Here are some situations where narrative analysis may be appropriate:

• Studying life stories: Narrative analysis can be useful in understanding how individuals construct their life stories, including the events, characters, and themes that are important to them.
• Analyzing cultural narratives: Narrative analysis can be used to analyze cultural narratives, such as myths, legends, and folktales, to understand their meanings and functions.
• Exploring organizational narratives: Narrative analysis can be helpful in examining the stories that organizations tell about themselves, their histories, and their values, to understand how they shape the culture and practices of the organization.
• Investigating media narratives: Narrative analysis can be used to analyze media narratives, such as news stories, films, and TV shows, to understand how they construct meaning and influence public perceptions.
• Examining policy narratives: Narrative analysis can be helpful in examining policy narratives, such as political speeches and policy documents, to understand how they construct ideas and justify policy decisions.

Characteristics of Narrative Analysis

Here are some key characteristics of narrative analysis:

• Focus on stories and narratives: Narrative analysis is concerned with analyzing the stories and narratives that people tell, whether they are oral or written, to understand how they shape and reflect individuals’ experiences and identities.
• Emphasis on context: Narrative analysis seeks to understand the context in which the narratives are produced and the social and cultural factors that shape them.
• Interpretive approach: Narrative analysis is an interpretive approach that seeks to identify patterns and themes in the stories and narratives and to understand the meaning that individuals and communities attach to them.
• Iterative process: Narrative analysis involves an iterative process of analysis, in which the researcher continually refines their understanding of the narratives as they examine more data.
• Attention to language and form : Narrative analysis pays close attention to the language and form of the narratives, including the use of metaphor, imagery, and narrative structure, to understand the meaning that individuals and communities attach to them.
• Reflexivity : Narrative analysis requires the researcher to reflect on their own assumptions and biases and to consider how their own positionality may shape their interpretation of the narratives.
• Qualitative approach: Narrative analysis is typically a qualitative research method that involves in-depth analysis of a small number of cases rather than large-scale quantitative studies.

Advantages of Narrative Analysis

Here are some advantages of narrative analysis:

• Rich and detailed data : Narrative analysis provides rich and detailed data that allows for a deep understanding of individuals’ experiences, emotions, and identities.
• Humanizing approach: Narrative analysis allows individuals to tell their own stories and express their own perspectives, which can help to humanize research and give voice to marginalized communities.
• Holistic understanding: Narrative analysis allows researchers to understand individuals’ experiences in their entirety, including the social, cultural, and historical contexts in which they occur.
• Flexibility : Narrative analysis is a flexible research method that can be applied to a wide range of contexts and research questions.
• Interpretive insights: Narrative analysis provides interpretive insights into the meanings that individuals attach to their experiences and the ways in which they construct their identities.
• Appropriate for sensitive topics: Narrative analysis can be particularly useful in researching sensitive topics, such as trauma or mental health, as it allows individuals to express their experiences in their own words and on their own terms.
• Can lead to policy implications: Narrative analysis can provide insights that can inform policy decisions and interventions, particularly in areas such as health, education, and social policy.

Limitations of Narrative Analysis

Here are some of the limitations of narrative analysis:

• Subjectivity : Narrative analysis relies on the interpretation of researchers, which can be influenced by their own biases and assumptions.
• Limited generalizability: Narrative analysis typically involves in-depth analysis of a small number of cases, which limits its generalizability to broader populations.
• Ethical considerations: The process of eliciting and analyzing narratives can raise ethical concerns, particularly when sensitive topics such as trauma or abuse are involved.
• Limited control over data collection: Narrative analysis often relies on data that is already available, such as interviews, oral histories, or written texts, which can limit the control that researchers have over the quality and completeness of the data.
• Time-consuming: Narrative analysis can be a time-consuming research method, particularly when analyzing large amounts of data.
• Interpretation challenges: Narrative analysis requires researchers to make complex interpretations of data, which can be challenging and time-consuming.
• Limited statistical analysis: Narrative analysis is typically a qualitative research method that does not lend itself well to statistical analysis.

About the author

Muhammad Hassan

Researcher, Academic Writer, Web developer

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Methods for Conducting and Publishing Narrative Research With Undergraduates

Azriel grysman.

1 Psychology Department, Hamilton College, Clinton, NY, United States

Jennifer Lodi-Smith

2 Department of Psychological Sciences and Institute for Autism Research, Canisius College, Buffalo, NY, United States

Introduction

Narrative research systematically codes individual differences in the ways in which participants story crucial events in their lives to understand the extent to which they create meaning and purpose (McAdams, 2008 ). These narrative descriptions of life events address a diverse array of topics, such as personality (McAdams and Guo, 2015 ), development (Fivush et al., 2006 ), clinical applications (Banks and Salmon, 2013 ), well-being (Adler et al., 2016 ), gender (Grysman et al., 2016 ), and older adult memory decline (Levine et al., 2002 ).

Narrative research is an ideal way to involve undergraduate students as contributors to broader projects and often as co-authors. In narrative or mixed method research, undergraduates have the opportunity to think critically about methodology during study construction and implementation, and then by engaging with questions of construct validity when exploring how different methods yield complementary data on one topic. In narrative research in psychology, students collect data, as in many traditional psychology laboratories, but they collect either typed or spoken narratives and then extensively code narratives before quantitative data analysis can occur. Narrative research thus provides a unique opportunity to blend the psychological realities captured by qualitative data with the rigors of quantitative methods.

Narrative researchers start by establishing the construct of interest, deciding when coding narratives for this construct is the most effective form of measurement, rather than a questionnaire or some other form of assessment. A coding manual is developed or adopted, and all coders study the manual, practice implementing it, and discuss the process and any disagreements until the team is confident that all coders are implementing the rules in a similar way. A reliability set is then initiated, such that coders assess a group of narratives from the data of interest independently, compare their codes, and conduct reliability statistics (e.g., Intraclass coefficient, Cohen's kappa). When a predetermined threshold of agreement has been reached and a sufficient percentage of the narrative data has been coded, the two raters are deemed sufficiently similar, disagreements are resolved (by conversation or vote), and one coder completes the remainder of the narrative data. Readers are directed to Syed and Nelson ( 2015 ) and to Adler et al. ( 2017 ) for further details regarding this process, as these papers provide greater depth regarding best practices coding.

Narrative Coding in an Undergraduate Laboratory: Common Challenges and Best Practices

When are students co-authors.

Narrative coding requires heavy investment of time and energy from the student, but time and energy are not the only qualities that matter when deciding on authorship. Because students are often shielded from hypotheses for the duration of coding in order to maintain objectivity and to not bias them in their coding decisions, researchers may be in a bind when data finally arrive; they want to move toward writing but students are not yet sufficiently knowledgeable to act as co-authors. Kosslyn ( 2002 ) outlines six criteria for establishing authorship (see also Fine and Kurdek, 1993 ), and includes a scoring system for the idea, design, implementation (i.e., creation of materials), conducting the experiment, data analysis, and writing. A student who puts countless hours into narrative coding has still only contributed to conducting the experiment or data analysis. If the goal is including students as authors, researchers should consider these many stages as entry points into the research process. After coding has completed, students should read background literature while data are analyzed and be included in the writing process, as detailed below (see “the route to publishing”). In addition, explicit conversations with students about their roles and expectations in a project are always advised.

Roadblocks to Student Education

One concern of a researcher managing a narrative lab is communicating the goals and methods of the interrater process to student research assistants, who have likely never encountered a process like this before. Adding to this challenge is the fact that often researchers shield undergraduates from the study's hypotheses to reduce bias and maintain their objectivity, which can serve as a roadblock both for students' education and involvement in the project and for their ability to make decisions in borderline cases. Clearly communicating the goals and methods involved in a coding project are essential, as is planning for the time needed to orient students to the hypotheses after coding if they are to be included in the later steps of data analysis and writing. In the following two sections, we expand on challenges that arise in this vein and how we have addressed them.

Interpersonal Dynamics

A critical challenge in the interrater process addresses students' experience of power relationships, self-esteem, and internalization of the coding process. In the early stages, students often disagree on how to code a given narrative. Especially when the professor mediates these early disagreements, students might feel intimidated by a professor who sides with one student more consistently than another. Furthermore, disagreeing with a fellow student may be perceived as putting them down; students often hedge explanations with statements like “I was on the fence between those two,” and “you're probably right.” These interpersonal concerns must be addressed early in the coding process, with the goal of translating a theoretical construct into guidelines for making difficult decisions with idiosyncratic data. In the course of this process, students make the most progress by explaining their assumptions and decision process, to help identify points of divergence. Rules-of-thumb that are established in this process will be essential for future cases, increasing agreement but also creating a shared sense of coding goals so that it can be implemented consistently in new circumstances. Thus, interpersonal concerns and intimidation undermine the interrater process by introducing motivations for picking a particular code, ultimately creating a bias in the name of saving face and achieving agreement rather than leading toward agreement because of a shared representation of micro-level decisions that support the coding system.

Clearly communicating the goal of the interrater process is key to establishing a productive coding environment, mitigating the pitfalls described above. One of us (AG) begins coding meetings by discussing the goals of the interrater process, emphasizing that disagreeing ultimately helps us clarify assumptions and prevents future disagreements. If the professor agrees with one person more than another, it is not a sign of favoritism or greater intelligence. Given the novelty of the coding task and undergraduate students' developmental stage, students sometimes need reassurance emphasizing that some people are better at some coding systems than others, or even that some are better coders, and that these skills should not be connected to overall worth.

The next set of challenges pertains to students' own life settings. Depending on the structure of research opportunities in a given department, students work limited hours per week on a project, are commonly only available during the academic semester, and are often pulled by competing commitments. Researchers should establish a framework to help students stay focused on the coding project and complete a meaningful unit of coding before various vacations, semesters abroad, or leaving the laboratory to pursue other interests. This paper discusses best practices that help circumvent these pitfalls, but we recommend designing projects with them in mind. Some coding systems are better suited to semester-long commitments of 3 h per week whereas others need larger time commitments, such as from students completing summer research. It is helpful to identify RAs' long-term plans across semesters, knowing who is going abroad, who expects to stay in the lab, and assigning projects accordingly.

Building a robust collaborative environment can shape an invested team who will be engaged in the sustained efforts needed for successful narrative research. In one of our labs (JLS), general lab meetings are conducted to discuss coding protocols and do collaborative practice. Then an experienced coder is paired with a new lab member. The experienced coder codes while walking the new coder through the decision process for a week's worth of assigned coding. The new coder practices on a standard set of practice narratives under the supervision of the experienced coder, discussing the process throughout. The new coder's work is checked for agreement with published codes and years of other practice coders. The new coder then codes new narratives under the supervision of the experienced coder for 2 weeks or until comfortable coding independently. The most experienced and conscientious junior applies for an internal grant each year to be the lab manager during senior year. This lab manager assigns weekly coding and assists with practical concerns. Coding challenges are discussed at weekly lab meetings. More experienced coders also lead weekly “discrepancy meetings” where two or three trained coders review discrepancies in a coded data set and come to a consensus rating. Such meetings give the students further learning and leadership opportunities. These meetings are done in small teams to accommodate the students' differing schedules and help build understanding of the constructs and a good dynamic in the team.

The Route to Publishing With Undergraduates in Narrative Psychology

When coding has successfully been completed, researchers then have the opportunity to publish their work with undergraduates. When talented students are involved on projects, the transition to writing completes their research experience. A timeline should be established and a process clearly identified: who is the lead author? Is that person writing the whole manuscript and the second author editing or are different sections being written? We have considered all these approaches depending on the abilities and circumstances of the undergraduate. In one example Grysman and Denney ( 2017 ), AG sent successive sections to the student for editing throughout the writing process. In another, because of the student's ability in quantitative analysis and figure creation (Grysman and Dimakis, 2018 ), the undergraduate took the lead on results, and edited the researcher's writing for the introduction and discussion. In a third (Meisels and Grysman, submitted), the undergraduate more centrally designed the study as an honors thesis, and is writing up the manuscript while the researcher edits and writes the heavier statistics and methodological pieces. In another example, Lodi-Smith et al. ( 2009 ) archival open-ended responses were available to code for new constructs, allowing for a shorter project time frame than collecting new narrative data. The undergraduate student's three-semester honors thesis provided the time, scope, and opportunity to code and analyze archival narratives of personality change during college. As narrative labs often have a rich pool of archival data from which new studies can emerge, they can be a rich source of novel data for undergraduate projects.

In sum, there isn't one model of how to yield publishable work, but once the core of a narrative lab has been established, the researcher can flexibly include undergraduates in the writing process to differing degrees. As in other programs of research, students have the opportunity to learn best practices in data collection and analysis in projects they are not actively coding. Because of the need to keep coders blind to study hypotheses it is often helpful to maintain multiple projects in different points of development. Students can gain experience across the research process helping collect new data, coding existing narratives, and analyzing and writing up the coding of previous cohorts of students.

Most importantly, narrative research gives students an opportunity to learn about individuals beyond what they learn in the systematic research process and outcomes of their research. The majority of undergraduate research assistants are not going on to careers as psychologists conducting academic research on narrative identity. Many undergraduate psychology students will work in clinical/counseling settings, in social work, or in related mental health fields. The skills learned in a narrative research lab can generalize far beyond the specific goals of the research team. By reading individual narratives, students and faculty have the opportunity to learn about the lived life, hearing the reality in how people story trauma, success, challenges, and change. They can begin to see subtlety and nuance beyond their own experience and come to appreciate the importance of asking questions and learning from the answers.

Author Contributions

All authors listed have made a substantial, direct and intellectual contribution to the work, and approved it for publication.

Conflict of Interest Statement

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Funding. Funding for this article is supported by an internal grant from Hamilton College.

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Narrative Inquiry, Phenomenology, and Grounded Theory in Qualitative Research

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• Md. Sayeed Akhter 5  

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Narrative inquiry, phenomenology, and grounded theory are the basic types of qualitative research. This chapter discusses the three major types of qualitative research—narrative inquiry, phenomenology, and grounded theory. Firstly, this chapter briefly discusses the issue of qualitative research and types. Secondly, it offers a conceptual understanding of narrative inquiry, phenomenology, and grounded theory including their basic characteristics. Finally, the chapter provides an outline of how these three types of qualitative research are applied in the field.

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Islam, R., Sayeed Akhter, M. (2022). Narrative Inquiry, Phenomenology, and Grounded Theory in Qualitative Research. In: Islam, M.R., Khan, N.A., Baikady, R. (eds) Principles of Social Research Methodology. Springer, Singapore. https://doi.org/10.1007/978-981-19-5441-2_8

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The Ultimate Guide to Qualitative Research - Part 2: Handling Qualitative Data

• Handling qualitative data
• Transcripts
• Field notes
• Survey data and responses
• Visual and audio data
• Data organization
• Data coding
• Coding frame
• Auto and smart coding
• Organizing codes
• Qualitative data analysis
• Content analysis

Thematic analysis

• Thematic analysis vs. content analysis
• Introduction

Types of narrative research

Research methods for a narrative analysis, narrative analysis, considerations for narrative analysis.

• Phenomenological research
• Discourse analysis
• Grounded theory
• Deductive reasoning
• Inductive reasoning
• Inductive vs. deductive reasoning
• Qualitative data interpretation
• Qualitative analysis software

Narrative analysis in research

Narrative analysis is an approach to qualitative research that involves the documentation of narratives both for the purpose of understanding events and phenomena and understanding how people communicate stories.

Let's look at the basics of narrative research, then examine the process of conducting a narrative inquiry and how ATLAS.ti can help you conduct a narrative analysis.

Qualitative researchers can employ various forms of narrative research, but all of these distinct approaches utilize perspectival data as the means for contributing to theory.

A biography is the most straightforward form of narrative research. Data collection for a biography generally involves summarizing the main points of an individual's life or at least the part of their history involved with events that a researcher wants to examine. Generally speaking, a biography aims to provide a more complete record of an individual person's life in a manner that might dispel any inaccuracies that exist in popular thought or provide a new perspective on that person’s history. Narrative researchers may also construct a new biography of someone who doesn’t have a public or online presence to delve deeper into that person’s history relating to the research topic.

The purpose of biographies as a function of narrative inquiry is to shed light on the lived experience of a particular person that a more casual examination of someone's life might overlook. Newspaper articles and online posts might give someone an overview of information about any individual. At the same time, a more involved survey or interview can provide sufficiently comprehensive knowledge about a person useful for narrative analysis and theoretical development.

Life history

This is probably the most involved form of narrative research as it requires capturing as much of the total human experience of an individual person as possible. While it involves elements of biographical research, constructing a life history also means collecting first-person knowledge from the subject through narrative interviews and observations while drawing on other forms of data , such as field notes and in-depth interviews with others.

Even a newspaper article or blog post about the person can contribute to the contextual meaning informing the life history. The objective of conducting a life history is to construct a complete picture of the person from past to present in a manner that gives your research audience the means to immerse themselves in the human experience of the person you are studying.

Oral history

While all forms of narrative research rely on narrative interviews with research participants, oral histories begin with and branch out from the individual's point of view as the driving force of data collection .

Major events like wars and natural disasters are often observed and described at scale, but a bird's eye view of such events may not provide a complete story. Oral history can assist researchers in providing a unique and perhaps unexplored perspective from in-depth interviews with a narrator's own words of what happened, how they experienced it, and what reasons they give for their actions. Researchers who collect this sort of information can then help fill in the gaps common knowledge may not have grasped.

The objective of an oral history is to provide a perspective built on personal experience. The unique viewpoint that personal narratives can provide has the potential to raise analytical insights that research methods at scale may overlook. Narrative analysis of oral histories can hence illuminate potential inquiries that can be addressed in future studies.

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To conduct narrative analysis, researchers need a narrative and research question . A narrative alone might make for an interesting story that instills information, but analyzing a narrative to generate knowledge requires ordering that information to identify patterns, intentions, and effects.

Narrative analysis presents a distinctive research approach among various methodologies , and it can pose significant challenges due to its inherent interpretative nature. Essentially, this method revolves around capturing and examining the verbal or written accounts and visual depictions shared by individuals. Narrative inquiry strives to unravel the essence of what is conveyed by closely observing the content and manner of expression.

Furthermore, narrative research assumes a dual role, serving both as a research technique and a subject of investigation. Regarded as "real-world measures," narrative methods provide valuable tools for exploring actual societal issues. The narrative approach encompasses an individual's life story and the profound significance embedded within their lived experiences. Typically, a composite of narratives is synthesized, intermingling and mutually influencing each other.

Designing a research inquiry

Sometimes, narrative research is less about the storyteller or the story they are telling than it is about generating knowledge that contributes to a greater understanding of social behavior and cultural practices. While it might be interesting or useful to hear a comedian tell a story that makes their audience laugh, a narrative analysis of that story can identify how the comedian constructs their narrative or what causes the audience to laugh.

As with all research, a narrative inquiry starts with a research question that is tied to existing relevant theory regarding the object of analysis (i.e., the person or event for which the narrative is constructed). If your research question involves studying racial inequalities in university contexts, for example, then the narrative analysis you are seeking might revolve around the lived experiences of students of color. If you are analyzing narratives from children's stories, then your research question might relate to identifying aspects of children's stories that grab the attention of young readers. The point is that researchers conducting a narrative inquiry do not do so merely to collect more information about their object of inquiry. Ultimately, narrative research is tied to developing a more contextualized or broader understanding of the social world.

Data collection

Having crafted the research questions and chosen the appropriate form of narrative research for your study, you can start to collect your data for the eventual narrative analysis.

Needless to say, the key point in narrative research is the narrative. The story is either the unit of analysis or the focal point from which researchers pursue other methods of research. Interviews and observations are great ways to collect narratives. Particularly with biographies and life histories, one of the best ways to study your object of inquiry is to interview them. If you are conducting narrative research for discourse analysis, then observing or recording narratives (e.g., storytelling, audiobooks, podcasts) is ideal for later narrative analysis.

Triangulating data

If you are collecting a life history or an oral history, then you will need to rely on collecting evidence from different sources to support the analysis of the narrative. In research, triangulation is the concept of drawing on multiple methods or sources of data to get a more comprehensive picture of your object of inquiry.

While a narrative inquiry is constructed around the story or its storyteller, assertions that can be made from an analysis of the story can benefit from supporting evidence (or lack thereof) collected by other means.

Even a lack of supporting evidence might be telling. For example, suppose your object of inquiry tells a story about working minimum wage jobs all throughout college to pay for their tuition. Looking for triangulation, in this case, means searching through records and other forms of information to support the claims being put forth. If it turns out that the storyteller's claims bear further warranting - maybe you discover that family or scholarships supported them during college - your analysis might uncover new inquiries as to why the story was presented the way it was. Perhaps they are trying to impress their audience or construct a narrative identity about themselves that reinforces their thinking about who they are. The important point here is that triangulation is a necessary component of narrative research to learn more about the object of inquiry from different angles.

Conduct data analysis for your narrative research with ATLAS.ti.

Dedicated research software like ATLAS.ti helps the researcher catalog, penetrate, and analyze the data generated in any qualitative research project. Start with a free trial today.

This brings us to the analysis part of narrative research. As explained above, a narrative can be viewed as a straightforward story to understand and internalize. As researchers, however, we have many different approaches available to us for analyzing narrative data depending on our research inquiry.

In this section, we will examine some of the most common forms of analysis while looking at how you can employ tools in ATLAS.ti to analyze your qualitative data .

Qualitative research often employs thematic analysis , which refers to a search for commonly occurring themes that appear in the data. The important point of thematic analysis in narrative research is that the themes arise from the data produced by the research participants. In other words, the themes in a narrative study are strongly based on how the research participants see them rather than focusing on how researchers or existing theory see them.

ATLAS.ti can be used for thematic analysis in any research field or discipline. Data in narrative research is summarized through the coding process , where the researcher codes large segments of data with short, descriptive labels that can succinctly describe the data thematically. The emerging patterns among occurring codes in the perspectival data thus inform the identification of themes that arise from the collected narratives.

Structural analysis

The search for structure in a narrative is less about what is conveyed in the narrative and more about how the narrative is told. The differences in narrative forms ultimately tell us something useful about the meaning-making epistemologies and values of the people telling them and the cultures they inhabit.

Just like in thematic analysis, codes in ATLAS.ti can be used to summarize data, except that in this case, codes could be created to specifically examine structure by identifying the particular parts or moves in a narrative (e.g., introduction, conflict, resolution). Code-Document Analysis in ATLAS.ti can then tell you which of your narratives (represented by discrete documents) contain which parts of a common narrative.

It may also be useful to conduct a content analysis of narratives to analyze them structurally. English has many signal words and phrases (e.g., "for example," "as a result," and "suddenly") to alert listeners and readers that they are coming to a new step in the narrative.

In this case, both the Text Search and Word Frequencies tools in ATLAS.ti can help you identify the various aspects of the narrative structure (including automatically identifying discrete parts of speech) and the frequency in which they occur across different narratives.

Functional analysis

Whereas a straightforward structural analysis identifies the particular parts of a narrative, a functional analysis looks at what the narrator is trying to accomplish through the content and structure of their narrative. For example, if a research participant telling their narrative asks the interviewer rhetorical questions, they might be doing so to make the interviewer think or adopt the participant's perspective.

A functional analysis often requires the researcher to take notes and reflect on their experiences while collecting data from research participants. ATLAS.ti offers a dedicated space for memos , which can serve to jot down useful contextual information that the researcher can refer to while coding and analyzing data.

Dialogic analysis

There is a nuanced difference between what a narrator tries to accomplish when telling a narrative and how the listener is affected by the narrative. There may be an overlap between the two, but the extent to which a narrative might resonate with people can give us useful insights about a culture or society.

The topic of humor is one such area that can benefit from dialogic analysis, considering that there are vast differences in how cultures perceive humor in terms of how a joke is constructed or what cultural references are required to understand a joke.

Imagine that you are analyzing a reading of a children's book in front of an audience of children at a library. If it is supposed to be funny, how do you determine what parts of the book are funny and why?

The coding process in ATLAS.ti can help with dialogic analysis of a transcript from that reading. In such an analysis, you can have two sets of codes, one for thematically summarizing the elements of the book reading and one for marking when the children laugh.

The Code Co-Occurrence Analysis tool can then tell you which codes occur during the times that there is laughter, giving you a sense of what parts of a children's narrative might be funny to its audience.

Narrative analysis and research hold immense significance within the realm of social science research, contributing a distinct and valuable approach. Whether employed as a component of a comprehensive presentation or pursued as an independent scholarly endeavor, narrative research merits recognition as a distinctive form of research and interpretation in its own right.

Subjectivity in narratives

It is crucial to acknowledge that every narrative is intricately intertwined with its cultural milieu and the subjective experiences of the storyteller. While the outcomes of research are undoubtedly influenced by the individual narratives involved, a conscientious adherence to narrative methodology and a critical reflection on one's research can foster transparent and rigorous investigations, minimizing the potential for misunderstandings.

Rather than striving to perceive narratives through an objective lens, it is imperative to contextualize them within their sociocultural fabric. By doing so, an analysis can embrace the diverse array of narratives and enable multiple perspectives to illuminate a phenomenon or story. Embracing such complexity, narrative methodologies find considerable application in social science research.

Connecting narratives to broader phenomena

In employing narrative analysis, researchers delve into the intricate tapestry of personal narratives, carefully considering the multifaceted interplay between individual experiences and broader societal dynamics.

This meticulous approach fosters a deeper understanding of the intricate web of meanings that shape the narratives under examination. Consequently, researchers can uncover rich insights and discern patterns that may have remained hidden otherwise. These can provide valuable contributions to both theory and practice.

In summary, narrative analysis occupies a vital position within social science research. By appreciating the cultural embeddedness of narratives, employing a thoughtful methodology, and critically reflecting on one's research, scholars can conduct robust investigations that shed light on the complexities of human experiences while avoiding potential pitfalls and fostering a nuanced understanding of the narratives explored.

Turn to ATLAS.ti for your narrative analysis.

Researchers can rely on ATLAS.ti for conducting qualitative research. See why with a free trial.

Qualitative Research Methods

• Gumberg Library and CIQR
• Qualitative Methods Overview
• Phenomenology
• Case Studies
• Grounded Theory

Narrative Inquiry

• Oral History
• Feminist Approaches
• Action Research
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Narrative inquiry uses stories to understand social patterns.  Stories from the participants and stories created by researchers from information they gather from participants are at the heart of narrative inquiry.  Life history and biography research is sometimes categorized as narrative inquiry.  

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Narrative research  is a term that subsumes a group of approaches that in turn rely on the written or spoken words or visual representation of individuals. These approaches typically focus on the lives of individuals as told through their own stories. Clandinin and Connelly define it as "a way of understanding and inquiring into experience through “collaboration between researcher and participants, over time, in a place or series of places, and in social interaction with milieus” ( Clandinin  & Connelly, 2000, p. 20)."

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• Published: 23 April 2024

Between equilibrium and chaos, with little restitution: a narrative analysis of qualitative interviews with clinicians and parent carers of children with medical complexity

• Stephanie Hodgson 1 ,
• Kirsten Noack 1 ,
• Ashleigh Griffiths 1 &
• Michael Hodgins 2  

BMC Health Services Research volume  24 , Article number:  504 ( 2024 ) Cite this article

Metrics details

Children with medical complexity (CMC) comprise 1% of the paediatric population, but account for over 30% of health service costs. Lack of healthcare integration and coordination for CMC is well-documented. To address this, a deep understanding of local contextual factors, experiences, and family-identified needs is crucial. The aim of this research was to investigate the lived experiences of CMC, their families, and healthcare staff, focusing on understanding the dynamics of care coordination and the challenges faced in providing integrated care, in order to inform the development of effective, family-centred models of care.

In April to July 2022, 31 semi-structured interviews were conducted with parents/guardians of CMC and healthcare professionals who care for CMC. Interviews explored complex paediatric care and care coordination barriers. An inductive thematic analysis was undertaken. Themes were then further explored using Frank’s narrative approach.

Through analysis, we identified that the restitution typology was absent from both staff and parent/guardian narratives. However, we uncovered narratives reflective of the chaos and quest typologies, depicting overwhelming challenges in managing complex medical needs, and proactive efforts to overcome barriers. Importantly, a novel typology termed ‘equilibrium’ was uncovered. Narratives aligning with this typology described medical complexity as a balance of power and a negotiation of roles. Within the equilibrium typology, illness trajectory was described as a series of negotiations or balancing acts between healthcare stakeholders, before finally reaching equilibrium. Participants described seeking a balance, where their expertise is respected, whilst maintaining the ability to rely on professional guidance and support. These insights provide a nuanced understanding of the multifaceted narratives shaping care experiences for CMC and their families.

Conclusions

Our research delineates multifaceted challenges within the care landscape for CMC, their families, and healthcare staff. Embracing the equilibrium narrative typology highlights the criticality of tailored, integrated care models. This necessitates prioritising clear role delineation and communication among caregivers, implementing support systems addressing the challenges of continuous caregiving, and integrating parents/guardians as essential members of the care team. These insights advocate for pragmatic and sustainable strategies to address the unique needs of CMC and their families within healthcare systems.

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Children with medical complexity (CMC) account for 1% of the total paediatric population yet contribute to over 30% of health service costs [ 1 ]. CMC require frequent access to a variety of health services and team-based interdisciplinary care over many years [ 2 ]. CMC are characterised, in part, by their ongoing reliance on multiple services. CMC, who may also be known as “complex chronic” [ 3 ] have multiple significant chronic health problems that affect multiple organ systems, resulting in functional limitations, high health care need or utilisation, and often the need for medical technology [ 4 , 5 , 6 ].

In most high-income countries, the team around the child is vast and varied and can include doctors, nurses, allied health workers, disability support workers, social services and many more. Crucial to this team around the child is the parent/guardian. The disconnect between these stakeholders and the overall lack of integration of healthcare for CMC is well documented [ 7 , 8 , 9 , 10 ]. The idea of designing integrated services to meet the needs of this growing population is also well documented [ 11 ]. We anticipate the precursor to designing new models of care for this cohort is a deep understanding of what is common and what is consistent between and amongst staff and families. But also, what is common and consistent amongst this medically complex cohort, where the diagnoses, touchpoints and experiences are varied.

To create a robust and appropriate co-designed model of care, a deep understanding of the local contextual factors, beliefs and experiences of key parties is crucial. Routine quantitative data sets cannot fully capture the experience of treating or caring for CMC [ 4 ]. New models dedicated to CMC must consider local contextual factors, expertise, existing care access, and community resources [ 4 ]. Subsequent novel models will be inadequate in scope if they cannot incorporate family-identified needs and functional limitations [ 4 ].

This qualitative research aims to understand the experiences of CMC and their caregivers through illness narratives. Semi-structured interviews provide a means of unlocking rich information about the providers and receivers of healthcare [ 12 ]. Drawing upon previous research in the field, this study explores key themes that emerge from the narratives of both staff and parents involved in the care of CMC. These narratives offer a valuable perspective, capturing the intertwined experiences of various stakeholders, with closely aligned yet distinct perspectives on the care provided to CMC. By delving into the rich stories shared by staff and parents, we can gain deeper insights into the challenges faced by this cohort and identify potential areas for improvement within the healthcare system.

The study took place in Hunter New England Local Health District (HNELHD) in New South Wales, Australia. HNELHD serves a diverse population of over 920,000 individuals, including a significant proportion of Aboriginal and Torres Strait Islander people and residents born overseas. HNELHD includes a major metropolitan centre as well as several large regional centres, smaller rural centres, and remote communities [ 13 ]. The paediatric specialty hospital in the district is the John Hunter Children’s Hospital (JHCH), located in Newcastle. The JHCH provides specialised tertiary referral services for complex paediatric care, including medical, surgical, trauma, and neonatal services and admit over 10,000 children and young people to hospital each year and perform over 100,000 occasions of service through outpatient clinics [ 14 ].

Recruitment

Staff involved in the care of CMC and parents or guardians of CMC were recruited during the period April to July 2022. Printed advertising materials about the project were displayed in HNELHD health facilities, schools and early childhood education and care centres. The project was also promoted on local community organisation and hospital social media channels. Additionally, health staff were directly informed about the study and provided with both printed and digital materials to share with colleagues and patients. Interested individuals were instructed to register their interest in participating, enabling self-referral for potential health staff, parent/guardian, and child/young person participants. A purposive sample was then selected from this list. Eligible health staff participants worked within HNELHD and were involved in the care of CMC. Likewise, parent/guardian participants were eligible if they were the primary caregivers of CMC receiving care in HNELHD. Child/young person participants, aged 7–17 years, with medical complexity and receiving care in HNELHD, were also eligible.

To select participants, the project team conducted brief screening phone calls using predefined questions outlined in Table  1 . These questions, tailored for staff, gathered details regarding their engagement with CMC, workplace, responsibilities, and experience. Similarly, questions for parents/guardians and children/young people aimed to ensure a diverse representation from both rural and metropolitan areas, covering various medical conditions. For eligibility purposes, age was asked during screening for child/young person participants only.

Following screening, ten parents/guardians of CMC, one CMC and 21 health professionals who work with or manage CMC were selected to participate. 60% of interviewed participants resided or worked within metropolitan settings and 40% in rural/regional settings. All sectors of the district and major facilities were represented. We did not record details on gender or years of experience.

One participant withdrew from the study prior to being interviewed due to illness. Unfortunately, this was the only CMC participant and no further children/young people were recruited. This was due to the young age of the child, parent preference for participating without their child present and healthcare issues that limited the ability of the child to participate in an interview.

Further detail of participant characteristics can be found in Tables  2 and 3 .

Participants received information sheets outlining the project’s objectives, participation requirements, associated risks, and benefits. Tailored versions were prepared for healthcare professionals, parent/guardians, and children aged 7–13 and 14–17. Written consent was obtained from all participants before conducting interviews.

Data collection

Thirty-one interviews were conducted between April and July 2022. Interviews were conducted with staff and parents/guardians from across HNELHD. One Health Service Project Officer and one Health Service Project Manager conducted the interviews. The interviewers did not have any pre-existing relationship with the participants. The duration of the interviews ranged from 45 to 85 min.

Interviews were deemed the most suitable approach for data collection, over other approaches including focus groups, due to both the logistical difficulty and the likelihood that participants may choose to withhold information in the presence of other staff [ 16 ]. The study was approved by the Hunter New England Human Research Ethics Committee (2022/ETH00104). Semi-structured interviews were conducted with staff and parents/guardians to collect qualitative data on the lived experience of complex paediatric care and the perceived barriers and enablers for consistent care coordination. The semi-structured interview guides, developed by the project team [see Additional file 1 ], were piloted with two nursing staff and one project consumer representative who was the mother of a CMC. Questions were centred on staff and parent/guardian experience in caring for CMC, including typical interactions, home or work life and perceived barriers and enablers to optimal care. As the interview questions required participants to recall potentially difficult experiences, interviewers offered breaks, provided the option to stop at any time and connected participants with information on mental health support services as appropriate.

One-on-one interviews were conducted virtually to prioritise participant convenience and comfort, with flexible scheduling allowing for sessions to be held at times and locations most convenient for participants. Each participant was interviewed once. Data collection for the qualitative interviews continued until data saturation, as agreed by the study team based on the likelihood of gaining additional, pertinent information from subsequent interviews. Interviews were recorded, transcribed verbatim and de-identified. Transcripts were not returned to participants for comment or correction. Pseudonyms and broad descriptors of people participating (for example, “physiotherapist”, “nurse”, “mother”) were assigned to maintain context and perspective of the participant whilst protecting privacy.

Two project members carried out an inductive thematic analysis following Braun and Clarke’s approach [ 17 ]. The analysis involved independently generating codes from the first transcript, engaging in discussion around discrepancies and reaching a consensus on a draft coding hierarchy. The project team collectively refined and developed the hierarchy during the coding of the remaining 30 transcripts. Once all transcripts were coded, further discussions between authors led to the generation of a thematic structure which was further refined during repeated engagement with the data, to ensure that the themes generated resonated with the story of the complete data set. NVivo 11 was used to assist with the organisational aspects of the analysis.

Given the alignment of our findings with existing narrative approaches [ 18 ], our initial themes were then further explored using Frank’s narrative approach as a second phase of analysis [ 18 ]. Storytelling and narrative analysis have long been popular within the social sciences. ‘Narratives’ can be understood in many ways, but traditionally they have been understood as a retold chronology of events with a plot and set of characters. Narratives often evoke causality, explaining a complex event or series of events coherently in terms of an underlying theory or ontology that the teller imparts [ 19 ]. Narratives engender coherence when explaining complex sets of events by ascribing meaning and enabling temporal connection to the complexity, ambiguity, and unpredictability of social and organisational experiences [ 20 ]. The importance of narratives is reflected in healthcare, where clinicians consistently entwine clinical information into stories of personal experience to share knowledge and generate effects [ 21 ]. A narrative approach offers a different way of exploring a patient’s world and reflecting on our everyday practices [ 22 ]. Storytelling is a particularly important tool for “reporting and illuminating the cultural contexts of health: the practices and behaviour that groups of people share and that are defined by customs, language and geography” [ 23 ].

Frank’s framework includes the restitution narrative, a narrative typology categorising participants’ stories where illness is described as a temporary disruption that can be overcome through effort and determination. Within the restitution typology, participants may see their illness as a challenge or a test, and they may be motivated to take action and make changes in order to restore their health and well-being. The quest narrative categorises participant’s illness stories as a journey or a quest in which they may be motivated to search for answers, solutions, or cures. They may see their illness as a mystery that needs to be solved, and they may be willing to try new treatments or approaches to find relief. The chaos narrative categorises participants’ stories of illness as overwhelming and unpredictable, and they may feel helpless and out of control. They may see their illness as a source of chaos or disorder in their lives and may struggle to find meaning or purpose in their experiences. The project team considered the different experiences and themes identified within the data set through these typologies to understand how clinicians and families consider their perceptions and experiences of illness trajectories for CMC. Through analysis, the project team identified that the restitution typology was notably absent from the narratives of both staff and parents/guardians. In addition, the team identified one new narrative typology prevalent in the narratives of participants. The team named this new typology ‘equilibrium’. As such, findings are presented against the narrative typologies of chaos, quest, and equilibrium. To provide a more in-depth understanding, each typology will first be demonstrated with an exemplar story in the results section below.

Chaos typology

From the moment Lucas was diagnosed with complex respiratory issues at 6 months old, his mother Emma’s life took a chaotic turn. Formerly a corporate accountant, she made the difficult decision to leave her job and dedicate herself to caretaking responsibilities. Initially overwhelmed, Emma sought guidance from nurses who assured her that she would eventually become adept at managing her child’s condition. However, over time, she came to the realisation that the sense of control she had hoped for would never eventuate: “it’s a humbling realisation, to know that disorder will forever be a part of our lives”. Despite her best efforts to gather information and ask questions during appointments, Emma often left feeling unheard and ill-equipped to provide the necessary care. The constant juggling of appointments and caregiving responsibilities strained the family dynamics, leaving Lucas’s sister feeling overlooked and resentful of the attention her sibling received.

The chaos narrative typology acknowledges the overwhelming nature of managing the complex medical needs of children (see Table  4 for themes identified within the chaos typology). Parents told stories of coming away from appointments feeling they had not received all the information they needed, despite having made notes and asking questions. Managing complex medical needs can feel like a full-time job in addition to other responsibilities, and parents felt overwhelmed by the sheer volume of information that they received. This often led to stories of disengagement and a lack of trust in medical professionals. This, in turn, diminished confidence in their ability to meaningfully contribute to the journey of care.

Most days I am in total fear of what to do and who to contact. I don’t know who to trust or who will help me. The healthcare system seems so complicated, and I feel completely incompetent. (P4, Mother).

One of the major challenges voiced by both parents/guardians and staff, was navigating the complex medical system, particularly when different specialist teams and personnel are involved. Staff told stories of their own difficulty with navigating the system and providing helpful information to families, particularly when they were unsure of what other medical professionals had already told them.

Trying to help these families can be confusing, time-consuming and a bit soul-destroying. I tried to help a family who were having to regularly drive two hours both ways to receive a blood test that I believed could be done more locally. I contacted several different local staff to try and come up with a solution. I don’t know if this should have been my responsibility. But I wanted to help. But in the end, I kept coming up with dead ends and it all got too time-consuming to pursue. (S14, Clinical Nurse Consultant).

The need to shift the focus from provider convenience to patient-centred care was prevalent within staff stories. Staff often used the interview time to critically reflect on the existing processes and systems, and their role in them.

We had a child that came in who had a genetic condition where she had frequent seizures. She was tube fed. Her mum was amazing. She had two other disabled children as well. The challenge for her was that even just getting to the hospital was a mission. So getting the kids into the car, getting them to the hospital, you can’t get a park (…) I just used to feel so sorry for this mum. She’s got so much on her plate. Life is hard. Yet for a little appointment where it might be a blood test or a simple appointment. It’s a 1/2 day mission for her to actually undertake that. How do we make it about the patient and what the patients and their family’s needs are rather than them trying to fit into what is easiest for us? (S2, Clinical Nurse Consultant).

Themes within the chaos narrative typology also highlighted the challenges that families faced when trying to navigate the medical system, particularly when they had more than one chronic or complex condition to manage. Families spoke of experiences being siloed into different specialty areas, making it difficult to keep on top of different appointments and care plans. They voiced disappointment over being expected to manage multiple teams and act as the primary conduit for information across various facilities and departments.

Quite often they will say, because the girls have a vision impairment, “Oh so what does the doctor think about that? How is their vision now?” I’m like well, I don’t know. I feel like it’s important for them to get my perspective, but if they want the proper ‘doctor information’ I feel like that’s something that would be easier communicated doctor to doctor. So having the medical opinion I feel is probably more important than me saying, well, ‘they don’t run into the walls when they walk around’. Like I know that’s good information, but it’s also not. (P7, Mother).

A recurring theme was the profound impact that having a CMC can have on family dynamics, relationships, and social situations. These narratives often revealed the tremendous challenges and adjustments families face in navigating the healthcare system, caregiving responsibilities, and the emotional toll it takes on their interpersonal relationships and broader social connections.

She (sister of CMC) gets quite distressed when her sister is distressed, and she also is quite resentful of missing school or being dragged to appointments these days. I try and avoid that because she misses enough with being a twin sister of a child with a disability. So we try and leave her out of it if we can. But that means we spend less and less time with her. (P7, Mother).

Typical stories illustrating the chaos typology reveal the immense challenge of managing CMC. The constant juggling of appointments, caregiving responsibilities, and inadequate communication with and amongst staff contributed to a feeling of disorder and frustration for everyone involved, including family members and healthcare professionals. Whilst some individuals endured a perpetual state of disorder, others found these experiences to be a catalyst for seeking positive change, as seen in the quest typology.

Quest typology

Carmen wanted to spare her 2-year-old son James from undergoing multiple general anaesthetics (GA) for his complex medical needs. Faced with resistance from staff members at her local hospital, Carmen refused to accept the status quo. Determined to find a solution, she wrote a letter addressed to the general manager of the hospital, detailing James’ medical history and the potential benefits of combining procedures under a single GA. Carmen received the gratifying news that her request had been granted. James underwent the necessary procedures without the burden of additional anaesthetics. Carmen even coordinated for James’s dentist to do a check-up while James was under the GA.

Many stories from staff and families exemplified themes characterised by the quest typology. These themes reflected experiences of pushing past real or perceived barriers in order to reach a positive outcome (see Table  4 for themes identified within the quest typology).

Communication between teams can be average at best. It’s a battle to push past those barriers, because sometimes you might not get an answer with that first email. But you just keep pressing on and you just kind of worm your way in sometimes. And sometimes they probably think you’re a pain in the neck. But if you just keep the patient and their family at the centre of your care you can’t go wrong. It’s just the way it has to be to have the best outcome for that patient and that family member. (S7, Clinical Nurse Consultant).

Many participant stories followed the four stages of the quest typology: (1) the setting out, (2) the struggle, (3) the encounter with the other, and (4) the return. In the example of Carmen and James above, the setting out was the need to avoid multiple GAs for a CMC, the struggle was the reluctance of the hospital to arrange multiple procedures under one GA, and the encounter with the other was the letter written to the general manager. The return was the satisfaction of successfully combining procedures under one GA. Amidst the challenges, there were moments of triumph that arose from the collaborative efforts between healthcare providers and families. A family’s proactive approach, driven by their trust in the healthcare system, became a catalyst for positive change. Seeking help when they feel at their wits’ end, families reached out to healthcare providers, believing that together they could make a difference.

Her central line got blocked and they needed to put a new one in, which meant that it was going to be another surgery (…) I mentioned that she had an MRI scheduled soon and would it be possible to do that at the same time to save her a general anaesthetic. And I was told that it was a good idea, but that it was unlikely that they could do that. I ended up writing a letter to the head of the hospital explaining the situation and how many general anaesthetics she’d had and that this was one time that the (hospital) could really do what’s in the best interest of this child and try and combine those two procedures under the one anaesthetic. And they did it. And not only did they do it that one time, they did it the next time as well. (P1, Mother).

A ubiquitous theme amongst participant stories was the transformative power of effective communication. Parent participants recounted when their concerns were dismissed or undermined and how this taught them that merely smiling and nodding was not effective. They described learning to assert their voices and advocate for loved ones, as they navigated the complexities of healthcare. Empowered by their own experiences, they learnt to approach healthcare interactions with greater confidence and to engage in open and honest dialogue with healthcare providers.

You almost have to know the language. And you have to know what information to give and why it’s important too. (P5, Mother).

Fragmentation in healthcare was seen as a significant issue. Many stories centred on the importance of acknowledging the holistic needs of patients and families beyond their medical needs. Central to these stories was the motivation of the parent/carer to search for answers and solutions – a key component of the quest narrative.

They’ve got a child with a disability and we as the health service have taught them that they have to fight for everything that they need. So we’ve created this ‘difficult parent’ when in fact they’re not actually a difficult parent. They’re just trying to do the best thing for their child. (S15, Clinical Nurse Consultant).

Stories typifying the quest typology illustrate the need to overcome barriers and achieve positive outcomes in managing CMC. Effective communication becomes a transformative force, empowering families to advocate for their loved ones and engage in meaningful dialogue with healthcare providers. Some participants reflected on the sense of fulfilment that their quest provided, while others focused on power balance and role negotiation within the caregiving team, as seen in the equilibrium typology.

Equilibrium typology

Tri was diagnosed with a chronic and complex neurological and metabolic condition. Her dad Bianh has been her main carer for over 10 years. In the early days a Doctor said to Bianh, “I’m the doctor, you’re the dad, I know best”. This took his confidence for a long time. Over time, Bianh felt that the different staff members involved in Tri’s care had come to understand Bianh and respected his input. He started to understand the different roles and the differences between the different services that cared for Tri. Bianh learnt that when staying in Ward 1, it was better for everyone if Bianh gave Tri a bath, and he knew which specialists preferred receiving questions from him via email rather than a phone call. Equipped with this knowledge, Bianh now confidently communicates his role and responsibilities to new staff members involved in Tri’s care.

Through the analysis of interview data, the project team identified that the restitution typology was absent from the narratives of both staff and parents/guardians. In addition, the project team identified one new narrative typology prevalent in the narratives of participants. This typology is ‘equilibrium’. Participant narratives that aligned with this typology typically described medical complexity as a balance of power and a negotiation of roles. They viewed their illness trajectory as a series of negotiations or balancing acts between healthcare stakeholders, before finally reaching some sort of equilibrium. For parents/guardians in particular, this typology encompassed the internal struggle to fulfil the role of an expert in their child’s care, balanced with not wanting the full encumbrance of being the care coordinator for their child (see Table  4 for themes identified within the equilibrium typology).

Within the equilibrium narrative, families grappled with the desire to be knowledgeable advocates for their child’s well-being. They strived to understand the intricacies of their child’s condition and treatment options, becoming experts in their own right. However, they also recognised the significance of not shouldering the entire burden of coordinating care. They sought a balance, where their expertise was respected, whilst maintaining the ability to rely on the guidance and support of professionals who possessed specialised knowledge and skills.

My child had an aspiration event. He became very gravely ill. That was initially managed by the doctors in ED, and I had a very strong sense of what the problem was. I’ll never forget that the doctors really listened to me. It was very late at night and he came in and they, as a team, saved his life. They were really focused on ‘what can this mother tell us that we need to know to help this child’. That to me is really at the heart of the very good care that we get. (P3, Mother).

Staff member participants acknowledged the unique power dynamics that exist within the family member/healthcare professional relationship. They expressed appreciation for the valuable insights and expertise that families brought to the table, but also recognised that this is case-dependent. Equilibrium in their role was about recognising and respecting the capabilities and preferences of the family. The narrative themes lay firmly in comprehending their own roles and responsibilities in a manner that harmoniously aligned with the power dynamics between families and professionals. It was the delicate equipoise between providing professional guidance and expertise whilst acknowledging and incorporating the family’s knowledge and preferences into the care plan.

And when we’re on a stay we do a lot of what the nurses would normally do because you know, it’s what we do every day, so it’s fine. But to then not give us the respect of consulting us a bit more. Like we’re not doctors by any means or anything like that but we do know [child’s name removed] and together we could work really well. (P9, Mother).

One recurring theme was the recognition of the parent/guardian as an important member of the team, as evidenced by their desire to contribute ideas and suggestions. They appreciated when healthcare providers listened to their insights and acted upon them, recognising the crucial role families can play in their child’s well-being. However, limited time and resources could sometimes hinder this collaboration, resulting in missed correspondence and fragmented communication between different healthcare professionals involved in the child’s care. The issue of time constraints was consistently mentioned as a significant factor impacting the quality of care provided. Healthcare professionals were often overloaded with responsibilities, and the limited time available for appointments and consultations restricted their ability to address all aspects of a child’s condition comprehensively.

A lot of my time for my complex patients isn’t recognised as part of my clinical work. It’s hard to actually identify the work involved in making phone calls, sending emails, writing reports, writing scripts, following up medications. All those little bits of time around one patient are not captured by a single appointment in my clinic. I think it’s under-recognized and there is really no robust way of capturing what is required to meet the health needs of these children. (S17, Medical Consultant).

The lack of clarity in roles and responsibilities also emerged as a significant theme. Whilst some parents were proactive and well-informed, describing coordinating their child’s care effectively, others struggled due to the overwhelming demands of caring for a CMC. The absence of a designated coordinator or a clearly defined lead role contributed to confusion and a sense of being caught in the middle for families. This ambiguity led to situations where different clinicians passed the responsibility to others, which caused delays and potential gaps in care. One service manager described that the most complex patients were the ones that missed out most, in that “everyone thinks everyone else is doing it”.

I think some of the challenges at the local level, are passing the buck or believing someone else will sort it out, and it’s not my job. I think it’s unfair for families to be caught in the middle of that, of two clinicians saying well, it’s not my job. And that’s where the families and the patients ultimately suffer in that situation. (S8, Clinical Nurse Consultant).

A prominent theme that emerged from the stories was the evolving dynamics and roles between children, families, and multiple staff members. Within positive experiences shared, a recurring element was the establishment of a mutual understanding between families and staff members regarding their respective functions and capabilities. This understanding fostered effective collaboration and contributed to the overall well-being of CMC and their families.

Our findings reveal the absence of the restitution narrative in discussions concerning CMC, highlighting the unique nature of the clinical and familial caregiving journey. Moreover, we introduce a novel typology termed ‘equilibrium’, shedding light on the delicate balance of roles and power dynamics within this context. Additionally, our study highlights the distinct burdens faced by parents/guardians and staff, emphasising the imperative for tailored support systems. These insights underscore the critical need for integrated, family-centred approaches in caring for CMC, paving the way for improved care coordination and enhanced outcomes.

Narrative analysis and absence of restitution

Analysing staff and parent/guardian interviews together allowed us to bring these narratives together, in the pursuit of common experience amongst these stakeholders, and to inform development of effective models of care [ 18 , 24 , 25 ]. This is of particular importance where the success and failure of integrated care interventions, including care coordination, have always been context dependent [ 26 , 27 , 28 ].

Frank’s archetype of restitution has been exemplified in narratives from survivors of cancer, Human Immunodeficiency Virus (HIV), and spinal cord injury [ 29 , 30 , 31 , 32 ]. However, the restitution narrative is absent from conversations about CMC. The restitution narrative describes coming to a place of healing, wellness, or managed independence, which is not a concept which typically applies to CMC. CMC are highly dependent on parent/guardian support, their conditions oftentimes lifelong and, in many cases, life-limiting. Within high income countries, parent/guardian interactions with the healthcare system can be frequent, long-term and occur across multiple health services.

Significance of long-term relationships between family and staff

Within our findings, the current limitations to provision of integrated care are starkly exposed, reflecting the findings of previous studies and literature on care provision for the CMC cohort [ 7 , 8 , 9 , 10 , 11 ]. These findings align with previous research [ 33 , 34 , 35 ], highlighting the significance of a long-term relationship between family and staff, that is consistently experienced as a source of stability and safety. This relationship serves as a platform for expressing care and addressing broader family needs, where these needs are genuinely heard and respected. The key to a successful long-term relationship lies in fostering an environment of mutual respect and collaboration. These findings also align with the WHO (World Health Organisation) framework on integrated, people-centred health services. This indicates that the future of care requires an ‘equal and reciprocal relationship’ between clinical and non-clinical professionals together with the individuals using care services, their families and communities [ 36 , 37 ].

Emergence of equilibrium narrative typology

While acknowledging the dynamic nature of Frank’s typologies, particularly the ongoing nature of the restitution narrative [ 18 ], our concept of equilibrium stands apart by emphasising the intricate balance and interplay of roles and power dynamics specifically within the context of caring for CMC. While restitution narratives may involve ongoing challenges, and this does overlap somewhat with the equilibrium typology, the later delves deeper into the nuanced interactions and negotiations inherent in the caregiving journey for CMC. Overall, the equilibrium narrative typology highlights the complex and challenging nature of caring for a CMC for both staff and parents/guardians. The theory of illness narrative is closely connected to cultural and structural contexts [ 18 , 24 ]. Within these contexts, we can observe healthcare staff and parents/guardians in the wider community providing care for individuals whose conditions often fall outside the realm of easily comprehensible illness experiences. As outliers to the common experience, parents/guardians and clinicians uniquely share the proximity and intensity of illness experiences collectively and make meaning within [ 18 ], and from, the narrative interdependence [ 38 ]. Clinician and parent/guardian narratives equally described the ongoing interactions, and the long-term, emotionally fraught, ethically challenging, and isolating experiences of medical complexity. Despite similarities in experience and perceptions of CMC, clinician and parent/guardian experiences had notable contrasts.

Our findings demonstrate that parents/guardians and staff experienced confusion about the roles and responsibilities of different members of the team. For parents/guardians, understanding this delineation, and therefore their own role within the team was extremely important. This theme has been well documented in the literature [ 39 , 40 , 41 , 42 , 43 , 44 ]. The existing body of evidence points to roles as being experienced as transient and malleable within the fragmented service structures which embody healthcare currently. Where roles are more defined, and where care coordination supporting role delineation is resourced and available, outcomes improve [ 11 , 43 , 45 ]. Additionally, these findings show that when roles are clearly defined and communicated, parents/guardians and staff are more confident to act with efficiency and reduced stress and burden on all stakeholders.

Burden of care experienced by clinicians and families

In these findings, a key difference between staff and parents/guardians is the type of burden they experience. While staff members face the challenge of balancing clinical and non-clinical tasks, an issue commonly noted in literature [ 43 , 45 , 46 ], parents/guardians carry the burden of providing continuous care for their CMC within the complexities of family life, community life, and across an ever-changing environment of healthcare provision [ 5 , 47 , 48 ]. This difference in burden highlights the need for comprehensive support systems that address the emotional, financial, and physical challenges faced by parents/guardians to support better outcomes [ 49 , 50 , 51 , 52 , 53 , 54 ]. Consistent with our findings and existing literature, staff members may benefit from streamlined processes and accessible resources to facilitate interpersonal communication and information transfer to fulfil their care coordination responsibilities [ 28 , 45 , 55 ].

The findings also highlight the juggling roles of parents/guardians as both a caregiver and a parent. This theme underscores the unique challenge faced by parents/guardians in balancing their roles and responsibilities, which can have implications for their own well-being and the quality of care provided [ 5 , 47 , 48 , 49 , 50 ]. Integrating parents/guardians as part of the care team and providing suitable support and coaching for families, as trialled and recommended in other research, may be effective in addressing this challenge [ 54 , 55 , 56 , 57 ]. Greater parent/guardian involvement in care for CMC has been found to contribute to more effective care coordination and improved outcomes [ 58 , 59 ]. Families are key to improved integrated care experiences and these conversations are best placed to be instigated by formal care providers [ 60 ].

This analysis provides novel insight into the relationship between staff and parents/guardians of CMC. It reflects the shared experience of long-term provision of care in a context where an integrated care approach is essential [ 11 ]. Meaning can be drawn from the sharing of staff and parents/guardians narratives and juxtaposing them, at an individual clinician/patient level of care. For instance, when considering how services and systems interact with families to support an integrated care experience and when considering the key aspects of governance, policy, and funding approaches that require a shift to achieve integrated care [ 11 ].

Family-centred approaches

The data contributes to a clearer understanding of why family-centred approaches are particularly important for this cohort. This builds on previous work to identify effective family-centred approaches to care for CMC [ 50 , 51 , 56 ]. By forming a comprehensive understanding of the dynamic interplay between CMC, families, and staff and their respective challenges, models of care that better serve the needs of families can be developed. These models must be attentive to staff capabilities and the healthcare environment to ensure practicality. With this pragmatism, models are more likely to be successful and sustainable. Recognising that CMC and their families experience a long-term struggle to balance their role within a large and varied team will help to develop models that are well suited to this cohort [ 39 , 61 ]. Continuing to enable the parent/guardian voice and adopting a ‘partnering in care’ approach is essential, with new ways to enhance this partnership likely to be discovered and explored [ 11 , 51 , 62 ]. As part of this, the need to address health inequalities that may impede the ability of families to fulfil their role within the care team must also be addressed. Factors such as language barriers or socioeconomic status can hinder effective care coordination for children with medical complexity. Without targeted support, these disparities risk exacerbating existing inequalities in health outcomes [ 63 , 64 ]. Thus, interventions aimed at mitigating these barriers are essential for ensuring equitable access to quality care for all children and families, regardless of individual circumstances.

Implications for clinical practice

Clinicians should prioritise clear delineation and communication of roles and responsibilities within the caregiving team. This includes ensuring that parents/guardians understand their role within the team, which can lead to increased confidence, efficiency, and reduced stress for all stakeholders.

Healthcare organisations and systems need to implement tailored support systems that address the multifaceted challenges faced by parents/guardians of CMC. This includes providing emotional, financial, and physical support to alleviate the burdens associated with continuous caregiving.

Recognising the dual roles of parents/guardians as caregivers and parents, healthcare models should actively integrate them as part of the care team. This involves providing suitable support and coaching for families to help them effectively balance their responsibilities and enhance the quality of care provided to CMC.

Study limitation

The limitation of this study is the absence of CMC perspectives. This restricts the depth of insight into care coordination experiences, possibly overlooking unique themes not expressed by adult participants.

Study strengths

Our study presents a novel analytic approach within the context of research on complex care needs in children. A key strength of this approach is centralising consumer, carer, and clinicians experience within their own journeys or ‘stories’ of experience. Considering the experiences and stories of clinicians and families through Frank’s narrative typologies has helped to reveal comparisons and contradicts among perceptions and experience. Additionally, a narrative approach to research with CMC allows for the complexity and heterogeneity of CMC experiences to be captured in a linear and graspable way that helps to make sense of these experiences.

CMC as a group are heterogeneous. They span multiple specialities and multiple services. Our study explores the challenges and dynamics within the caregiving journey for CMC, particularly through the analysis of themes within the equilibrium typology. Our findings emphasise the need for integrated, family-centred approaches in caring for CMC, advocating for tailored support systems and clear delineation of roles within caregiving teams. By understanding and addressing these nuanced needs, healthcare providers and policymakers can work towards more holistic, patient-centred approaches to care, ultimately driving positive change in healthcare systems for CMC and their families.

Data availability

The datasets analysed during the current study are available from the corresponding author on reasonable request.

Abbreviations

children with medical complexity

general anaesthetics

Hunter New England Local Health District

Human Immunodeficiency Virus

Rural, Remote and Metropolitan Area

World Health Organisation

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The authors wish to acknowledge the parent/guardian participants and staff of Hunter New England Local Health District for their invaluable contributions to this qualitative research project.

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SH and AG conducted and transcribed qualitative interviews. SH and KN coded and analysed interview data. MH provided mentorship regarding qualitative methods, analysis and manuscript preparation. SH, KN and MH drafted the manuscript. All authors reviewed, edited and approved the final manuscript.

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Hodgson, S., Noack, K., Griffiths, A. et al. Between equilibrium and chaos, with little restitution: a narrative analysis of qualitative interviews with clinicians and parent carers of children with medical complexity. BMC Health Serv Res 24 , 504 (2024). https://doi.org/10.1186/s12913-024-10973-6

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