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Care biography: A concept analysis

July 2024
Nursing Philosophy 25(3):e12489

DOI:10.1111/nup.12489

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Authors:

Matthew Tieu

The University of Adelaide

Aileen Collier

Tom Cochrane

Flinders University

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In this article, we investigate how the concept of Care Biography and related concepts are understood and operationalised and describe how it can be applied to advancing our understanding and practice of holistic and person‐centred care. Walker and Avant's eight‐step concept analysis method was conducted involving multiple database searches, with potential or actual applications of Care Biography identified based on multiple discussions among all authors. Our findings demonstrate Care Biography to be a novel overarching concept derived from the conjunction of multiple other concepts and applicable across multiple care settings. Concepts related to Care Biography exist but were more narrowly defined and mainly applied in intensive care, aged care, and palliative care settings. They are associated with the themes of Meaningfulness and Existential Coping , Empathy and Understanding, Promoting Positive Relationships, Social and Cultural Contexts , and Self‐Care , which we used to inform and refine our concept analysis of Care Biography. In Conclusion, the concept of Care Biography, can provide a deeper understanding of a person and their care needs, facilitate integrated and personalised care, empower people to be in control of their care throughout their life, and help promote ethical standards of care.

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Received: 6 February 2024

Revised: 10 May 2024

Accepted: 18 June 2024

DOI: 10.1111/nup.12489

ORIGINAL ARTICLE

Care biography: A concept analysis

Matthew Tieu PhD, Research Fellow

1,2,3

Regina Allande‐Cussó PhD, Associate Professor

2,4

Aileen Collier PhD, Associate Professor

1,2

|Tom Cochrane PhD, Senior Lecturer

Maria A. Pinero de Plaza PhD, Research Fellow

1,2

Michael Lawless PhD, Research Fellow

1,2

Rebecca Feo PhD, Senior Research Fellow

1,2

Lua Perimal‐Lewis PhD, Senior Research Fellow

Carla Thamm PhD, Senior Research Fellow

1,2

|Jeroen M. Hendriks PhD, Professor

1,2

Jane Lee PhD, Research Fellow

1,2

|Stacey George PhD, Professor

1,2

Kate Laver PhD, Professor

1,2

|Alison Kitson PhD, Professor

1,2

Caring Futures Institute (CFI), Flinders

University, Adelaide, South Australia, Australia

College of Nursing and Health Sciences,

Flinders University, Adelaide, South Australia,

Australia

College of Humanities, Arts and Social

Sciences, Flinders University, Adelaide,

South Australia, Australia

Faculty of Nursing, Physiotherapy and

Podiatry, University of Seville, Seville, Spain

College of Science and Engineering, Flinders

University, Adelaide, South Australia, Australia

Correspondence

Matthew Tieu, PhD, Research Fellow, College

of Nursing and Health Sciences, Flinders

University, GPO Box 2100, Adelaide 5001,

South Australia, Australia.

Email: matthew.tieu@flinders.edu.au

Abstract

In this article, we investigate how the concept of Care Biography and related

concepts are understood and operationalised and describe how it can be applied to

advancing our understanding and practice of holistic and person‐centred care.

Walker and Avant's eight‐step concept analysis method was conducted involving

multiple database searches, with potential or actual applications of Care Biography

identified based on multiple discussions among all authors. Our findings demonstrate

Care Biography to be a novel overarching concept derived from the conjunction of

multiple other concepts and applicable across multiple care settings. Concepts

related to Care Biography exist but were more narrowly defined and mainly applied

in intensive care, aged care, and palliative care settings. They are associated with the

themes of Meaningfulness and Existential Coping,Empathy and Understanding,

Promoting Positive Relationships, Social and Cultural Contexts, and Self‐Care, which

we used to inform and refine our concept analysis of Care Biography. In Conclusion,

the concept of Care Biography, can provide a deeper understanding of a person and

their care needs, facilitate integrated and personalised care, empower people to be

in control of their care throughout their life, and help promote ethical standards

of care.

KEYWORDS

biographical approach, care biography, care diary, caring life course theory,

person‐centred care

Nursing Philosophy. 2024;25:e12489. wileyonlinelibrary.com/journal/nup

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https://doi.org/10.1111/nup.12489

This is an open access article under the terms of the Creative Commons Attribution‐NonCommercial‐NoDerivs License, which permits use and distribution in any

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1|INTRODUCTION

1.1 |Background

The ethical standard or ‘gold standard’of care provision is

nowadays captured within various ‘person‐centred’,‘patient‐

centred, 'relationship‐centred’,‘integrated’, and ‘fundamental care’

frameworks. While there are significant differences among them,

they all have in common an emphasis on personalised and holistic

approaches to care (Balint, 1969; Brooker, 2007; Engel, 1977; Feo

et al., 2018; Kitwood & Brooker, 2019; McCance et al., 2011;

McCormack, 2004; Stewart, 2001). Whether explicitly or implicitly,

they are inspired by the humanistic ideals of autonomy, self‐

actualisation, dignity, and empathy (Rogers, 1957), and recognition

of the vital role that appropriate communication and care relation-

ships play in promoting those ideals (Kitwood & Brooker, 2019;

Tresolini, 1994). More recently, life course perspectives have

contributed to further conceptual and theoretical development of

such frameworks, helping us to understand the causal antecedents of

a person's care needs, how they shape subsequent health trajec-

tories, and how they inform ongoing holistic care provision

throughout the lifespan (Halfon et al., 2014; Kitson et al., 2022;

Lawless et al., 2024). Traditionally, our understanding of care focused

narrowly on specific health outcomes and goals related to specific

conditions and defined timeframes. Such a view fails to consider the

nuanced interdependencies and histories that create an ecosystem of

care and support, leading to missed opportunities for comprehensive,

meaningful and sustainable care strategies. In contrast, life course

frameworks compel a greater emphasis on a person's historical and

lived experience of illness, a narrative understanding of their care

needs, and the complex ecosystem of care and support in which they

are embedded. The Caring Life Course Theory (CLCT) developed by

Kitson et al. (2022) is one such framework. It adopts a temporally

extended and integrated view of a person's healthcare trajectory and

is underpinned by a number of theoretical constructs, in particular,

‘Care Biography’.

The novel contribution of the theory is the interplay

between understanding a person's care needs and

provision within the context of their lifespan and

personal histories, termed their care biography. (Kitson

et al., 2022,p. 1)

Given the increased prevalence of people living with long‐term

and complex care needs, there is an urgent need to ensure that how

we provide care accords with the humanistic ideals captured within

those care frameworks. This requires a degree of conceptual clarity

and agility in how we understand a person's care needs and how

those needs relate to the historical, social, cultural, environmental,

and technological contexts in which a person is embedded. Emerging

digital technologies that capture and draw from vast amounts of

personal information across the lifespan have great potential to help

us achieve the ethical ideals of care but can also be misdirected and

misapplied (Tieu & Kitson, 2023; Tieu, 2021). Therefore, integrated,

holistic, and personalised approaches to care need to be conceptua-

lised and understood in a way that informs the appropriate

development and application of such technologies. Further clarifica-

tion and development of the concept of Care Biography, alongside

related concepts, can provide us with the conceptual tools necessary

to ensure that the ethical ideals of care are understood and upheld as

we enter an era of rapid and unprecedented technological progress.

We hope that this will stimulate further thought and scholarship on

some of the deeper philosophical questions related to the assump-

tions, ideas and understandings of care and its contribution to ‘the

good life’.

2|METHODS

2.1 |Aim

The aim of this article is to clarify and develop the concept of Care

Biography to enrich our understanding of care, inform new and

innovative approaches to record keeping and care provision, and

contribute to ongoing development and refinement of care frameworks

that capture the humanistic dimensions of care across the life course.

2.2 |Design

We apply Walker and Avant's (2019) eight‐step method, which is an

iterative process in which revisions to each step are made in light of

findings arising from other steps. It enables examination of the

characteristics, relationships, and function of an idea or phenomenon,

and facilitates proposal of formal definitions. Essentially, we selected

Care Biography as our concept of interest and undertook a structured

literature search to identify relevant and related concepts. We

explored and analysed the literature, then developed a detailed list of

defining attributes of Care Biography and described potential model

cases of applications of Care Biography.

Step 1: Select a concept: Care Biography is a key construct of the

CLCT, which applies a life course perspective toward understanding a

person's care needs.

Step 2: Determine aims and purpose of analysis: Our aim was to

develop and refine the concept of Care Biography. We did this by

searching and reviewing the relevant literature according to Walker

and Avant's (2019) eight‐step method, as well as engaging with

colleagues with expertise across various disciplines, including

cardiovascular nursing (JH), emergency department nursing (RAC),

cancer nursing (CT), occupational therapy (SG and KL), palliative care

(AC), aged care and digital technology (LPL, JL and ML), nursing

theory (AK, RF and MAPP) and ethics and philosophy (TC and MT) to

provide insights into how the concept could or was being applied in

different contexts and settings.

Step 3: Identify uses of the concept: Initial database searches

revealed very limited use of the concept of Care Biography. Hence,

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we developed a typography of related concepts and terms based on

our existing familiarity with the literature and multiple discussions

among co‐authors. This also enabled us to identify potential border-

line, contrary, and illegitimate cases as required for Step 6. We

selected the most relevant terms as database search terms and

performed a deductive/inductive thematic analysis of the literature.

Step 4: Determine the defining attributes: Based on the initial

definition and an analysis of Care Biography from the CLCT, and

analysis of related concepts in the literature, we describe the cluster

of attributes associated with the concept of Care Biography.

Step 5: Identify model cases: Following on from Step 4 above,

we identified model cases of Care Biography in a range of care

contexts and settings through discussions among all authors.

Step 6: Identify and examine borderline, related, contrary,

invented and illegitimate cases: Results of the literature review and

analysis enabled us to identify borderline, related, and illegitimate

cases. Additional cases are also considered and briefly discussed.

Step 7: Identify antecedents and consequences: We describe

the kinds of events and understandings necessary for development of

Care Biographies (antecedents) and their application in care practice

(consequences).

Step 8: Define empirical referents: Drawing from the attributes

of care biography in Step 4, we describe the kinds of phenomena that

may constitute an occurrence of Care Biography and its application.

2.3 |Search methods

As part of Step 3 of the concept analysis, we performed database

searches (CINAHL, Scopus and PubMed) using keywords based on a

selection of the most relevant terms identified from our initial

typography of concepts related to Care Biography. Full‐text searches

from all available date ranges (up until 23 August 2023) for the

following terms were performed: ‘care biograph*’OR ‘biograph* of

care’OR ‘biograph* approach*’AND ‘care’OR ‘care diar*’. Peer‐

reviewed journal articles and book chapters of any kind (i.e., empirical

research, study protocols, reviews, discussion papers, commentaries

and editorials), written in English were included. Non‐peer‐reviewed

articles and books, grey literature, dissertations/theses, conference

papers, book reviews and any non‐English articles were excluded.

Only articles that pertained to health care of humans as recipients of

care were included. Articles that did not pertain to health care (e.g.,

social services) of humans as recipients of care (e.g., articles that

focused on non‐human animals or solely on carers and family

members of care recipients) were excluded.

2.4 |Search outcomes

The database searches returned a total of 322 articles for initial

screening (Table 1). The web‐based platform Covidence™was used

for screening and data extraction. Duplicates were initially removed

(n= 130) and then title and abstract screening (n= 192) followed by

full‐text screening (n= 119) was performed by the lead author (MT)

based on the inclusion/exclusion criteria outlined above. A total of 71

articles were returned for data extraction and analysis (PRISMA flow

diagram in Figure 1).

2.5 |Data extraction, analysis and synthesis

Two authors completed the data extraction (MT and RAC) using

Covidence™. An initial analysis of the CLCT definition of Care Biography

was performed to identify key attributes. A hybrid deductive/inductive

thematic analysis was performed using those attributes as pre‐ordinate

themes, combined with themes emerging from data extracted from

literature (Fereday & Muir‐Cochrane, 2006). This enabled us to compare

the CLCT definition of Care Biography with related concepts from the

literature. Thematic coding for both deductive and inductive compo-

nents was performed by the lead author (MT) and two additional co‐

authors(RACandML).Theanalysisprovidesthebasisforfurther

refinement of the CLCT definition of Care Biography drawing from

related concepts.

3|RESULTS

3.1 |Papers describing the concept of interest

Of the 71 included articles, most were empirical research (n= 46) and

review articles (n= 15). Other papers included study protocols (n= 3),

discussion papers (n= 3) and commentaries or editorials (n= 4). Initial

database searches identified several articles containing the specific

phrases ‘care biography’and ‘biography of care’, or similar variations.

However, only a few of those articless met the inclusion criteria (n=2

for ‘care biography’and n= 1 for ‘biography of care’). The phrase

‘biographical approach’appeared more frequently (n= 23) as well as

various iterations of ‘care diary’(n= 47). Most papers focused on a

range of patient conditions and care contexts/settings, including

intensive care (n= 24), aged or dementia care (n= 13), cancer care

(n= 9) and palliative care (n= 5), type 1 diabetes among pregnant

women (n= 3) and other miscellaneous conditions/settings (n= 12). A

small number of papers did not focus on any specific patient

condition or care context (n= 5). This information is summarised in

Table 2below.

TABLE 1 Search results.

Search terms CINAHL (EBSCO) SCOPUS PubMed

‘care biograph*’890

‘biograph* of care’170

‘biograph* approach*’

AND ‘care’

40 54 28

‘care diar*’46 75 54

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One of the two articles that specifically referenced ‘care

biography’was by Kitson et al. (2022) whose definition of Care

Biography is the subject of our concept analysis. The other was by

Beasley et al. (2015), a study investigating the lived‐experience of

volunteers in a ‘care biography service’for palliative care patients

(Beasley et al., 2015). A similar construct, ‘biography of care’was

mentioned in a commentary by McMillan (2011) on education and

training of care providers (McMillan, 2011). The phrase ‘biographical

approach’, which appeared more frequently was applied mainly in the

context of aged or dementia care (n= 13), with some application in

palliative care (n= 3), intensive care (n= 1) and various other specific

and non‐specific care contexts (n= 6). It should be noted that

reference to ‘biographical approach’in several papers pertained

specifically to study methodology (n= 7) while others were associ-

ated with an intervention or review of interventions (n= 16). Various

iterations of ‘care diary’were prevalent, particularly ‘intensive care

diary’(n= 24). The notion of a ‘self‐care diary’was also prevalent

(n= 14) with some uses of this term related specifically to the ‘self‐

care diary’(SCD) measurement tool developed by Nail et al. (1991)

for cancer patients (n= 6).

3.2 |Concepts of interest

3.2.1 |The CLCT definition of Care Biography

Care Biography is a key theoretical construct of the CLCT (Kitson

et al., 2022). Our analysis of the CLCT definition revealed that it is

comprised of the following three attributes:

FIGURE 1 PRISMA flow diagram.

TABLE 2 Article information.

Article Information n

Article types

•Empirical Research 46

•Reviews 15

•Study Protocols 3

•Discussion Papers 3

•Commentary/Editorial 4

Patient conditions and care contexts

•Intensive Care 24

•Aged/Dementia Care 13

•Cancer Care 9

•Palliative Care 5

•Type 1 Diabetes and Pregnancy 3

•Non‐specific 5

•Other 12

Concept/Construct

•Care Biography 2

•Biography of care 1

•Biographical Approach 23

•Intensive Care Diary (ICU Diary) 24

•Self‐Care Diary 14

•Care Diary 8

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1. A personalised record of a person's self‐care capability, capacity, and

care preferences:‘A care biography is equivalent to a personalised

health record in that it should record, across the life course, a

person's self‐care capability and capacity and their preferences in

how care is provided for them’(p. 10).

2. A personalised care plan:‘It should also help them and their carers

plan care following certain negotiated care trajectories. This

information would be owned by the individual and used to

negotiate care in each care encounter’(p. 10).

3. A record of a person's care network:‘Importantly, the care

biography should also record each person's care network,

identifying their key carers and those for whom they care over

their life course’(p. 10).

Essentially, the CLCT definition of Care Biography collects

information pertaining to three elements—preferences,plans and

people. The first element generates a person's care and self‐care

preferences while considering relevant abilities and availability of

resources. The second element enables a person to be in control of

generating a care plan at different points in their life, one that both

articulates and advocates for their care needs (including fundamental

care needs). The third element both captures and informs the people

who are involved in providing care as part of an extended care

network linked to appropriate system and professional support.

These elements in conjunction with the attributes of the CLCT

definition of Care Biography provide a priori themes and the coding

framework for the deductive component of our thematic analysis.

3.2.2 |‘Care biography’and ‘biography of care’

The study by Beasley et al. (2015) investigating the lived experience

of volunteers involved in a palliative ‘care biography’service aims to

enable patients to recognise ‘what they had accomplished in their

lives, and to emphasise the meaningfulness of their lives for

themselves, family, and friends’(p. 1417–1418). Given the focus on

a patient's life history and accomplishments, the notion of a ‘care

biography’in this particular instance is one that takes a lifespan

perspective of the patient and not of their care needs. The

commentary by McMillan (2011), which mentioned ‘biography of

care’focused on the perspective of care providers and their attitudes

towards patients, emphasising how ‘stories engage readers more fully

than do clinical descriptions’and how those stories ‘provide students

with language and tools for thinking about and managing, not only

their patients, but also themselves and their own emotions’(p. 206).

The concept of ‘biography of care’in this context was relatively broad

and thus embodied the attributes of the CLCT definition of Care

Biography in a general sense. However, while their use of the term

‘biography of care’identified the relational aspect of care provision,

there was no explicit mention of whether any relevant records or

documentation were produced in conjunction with carers, patient,

and family, or owned by patient (and/or family), nor was there any

specific consideration of the broader contexts of care provision.

3.2.3 |‘Biographical approach’

The phrase ‘biographical approach’appeared frequently, particularly

in aged care, dementia care and palliative care contexts. Many papers

emphasised the importance of understanding a patient's lived

experience, personal reflections, and personal preferences regarding

how they are cared for, taking into consideration the patient's family

and social network. Such considerations are often framed in terms of

‘person‐centred’,‘patient‐centred’or ‘relationship‐centred care’. For

example, as Ryan (2022) states ‘typically, person/relationship‐centred

care interventions are underpinned by activities and practices that

seek to understand the person or patient’and hence ‘biographical

approaches provide the platform from which care can be organised’

(p. 894). Similarly, Surr (2006) describes biographical approaches to

dementia care as essentially aimed at preserving a person's selfhood,

which is understood as a psychological, social, and biographical

construct. The primary focus of these papers was to encourage care

staff to connect to the patient as a person. They did not explicitly use

the care encounter to build up a picture of the care needs,

capabilities, capacities, and preferences of the person receiving care,

either at a point in time (synchronic) or across the lifespan

(diachronic). Integrated approaches accounting for medical, physical,

and psychosocial care needs were a key feature in most of the

articles and so too the quality of care relationships. However,

consideration of a person's care network was not always a prominent

feature, nor was there any explicit mention of whether relevant

documentation was produced in conjunction with carer, patient, and

family, or owned by patient (and/or family).

3.2.4 |‘ICU diaries’

Papers that mentioned ‘ICU diaries’were very consistent in how they

conceptualised their purpose and function, how they were produced,

and by whom they were owned. The ICU diary is primarily intended

to help patients ‘fill in the significant gaps they have in their

memories and put any delusional memories into context and so aid

psychological recovery’(Jones et al., 2010, p. 2). There is much

emphasis on facilitating meaning‐making, understanding, and coping

for the patient and this often involves consideration of their relatives

and the role they play in providing ongoing support to the patient.

ICU diaries also typically incorporate photographs to visually capture

experiences that a patient and/or their family may not clearly recall.

In this regard the ICU diary constitutes a highly personalised care

narrative involving a patient's broader care network, which is aimed

at providing ongoing and integrative care support for patient self‐

care. While nurses are typically the principal authors of ICU diaries, in

some cases family members and friends actively contribute to the

diary as co‐authors or are encouraged to write separate accounts

which are then later added to the diary (Egerod et al., 2011; Ewens

et al., 2015). The diaries are typically kept by nurses during a patient's

ICU stay and then handed over to the patient and/or their family

upon discharge. In this regard, ICU diaries are to some extent owned

TIEU ET AL.

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by the patient and their family and thus embody all themes from

the CLCT definition of Care Biography. ICU dairies also represent the

integration of physical, medical, and psychosocial care needs while

capturing the crucial role that care relationships and care networks

play in addressing those care needs.

3.2.5 |‘Care diary’and ‘self‐care diary’

Aside from ICU dairies, the notion of a ‘care diary’or a ‘self‐care diary’

was associated with a variety of different patient care needs,

contexts, and settings. Several papers referred specifically to the

‘self‐care diary’(SCD), which is a measurement tool for cancer

patients (Nail et al., 1991). According to Yahaya et al. (2015) it aims to

capture ‘all side effects of chemotherapy along with a list of self‐care

activities’(p. 729). Aside from the SCD, the purpose and function of

self‐care diaries was primarily condition and context specific,

containing information limited to a particular range of medical

conditions and self‐care practices. Such diaries were often described

as providing a resource for patients to inform them of their condition

and help them undertake self‐care independently or in conjunction

with care providers. For example, in a study by Sabzghabaee et al.

(2012) an asthma care diary was used ‘to educate the patient about

their asthma and its management’(p. 67), while in a study by Miller

et al. (2007) it was stated that an oral self‐care diary for

chemotherapy patients ‘would encourage patient involvement in

self‐care and promote discussion between patients and their health

professionals’(p. 84). In this regard, there is some synergy with CLCT

definition of Care Biography in that it facilitates and captures a

person's self‐care capability and capacity as part of a personalised

care record. However, while some of the information contained in

such diaries was personalised, there was little to no scope for

information regarding personal reflections and lived experience.

Additionally, only one article by Sharp et al. (2004) explicitly

mentioned any role of family in care diaries, where they state that

part of the purpose of diaries was ‘to improve information between

patients, family members, and clinicians in different settings’(p. 120).

Hence, based on the literature identified, the notion of a ‘care diary’

or ‘self‐care diary’bears little relation to an ICU diary or the CLCT

definition of Care Biography.

3.2.6 |Relation to CLCT definition and themes

Our primary finding was that existing literature describing any aspect

of Care Biography is sparse. There was no body of knowledge or

understanding of how the concept could enhance person‐centred

care. The concepts of ‘care biography’referred to by Beasley et al.

(2015) and ‘biography of care’referred to by McMillan (2011)

captured the importance of the experiential, existential and relational

aspects of care provision and converge on the idea of ensuring health

care professionals take more account of the personhood of patients

by considering relevant biographical details (Beasley et al., 2015;

McMillan, 2011). This is more explicitly articulated in literature

referring to the notion of a ‘biographical approach’to care

(Ryan, 2022; Surr, 2006). While these considerations are embedded

in the CLCT definition of Care Biography, our analysis indicates that

they did not necessarily entail a connection between understanding a

person's own view of how they care for themselves (self‐care), or

how they have experienced care from others in the past. This means

that the concept of Care Biography, as articulated in the original

CLCT definition, is significantly more detailed and multidimensional

than these related concepts.

Promising codesign and co‐ownership approaches were

described in the literature referring to ICU diaries, which reflect the

importance of the care context, the relationship between the patient

and their carers, and the importance of recording what actually

happened to them so they can begin to draw meaning and make

sense of their situation (Egerod et al., 2011; Ewens et al., 2015; Jones

et al., 2010). However, while eliciting self‐care capability and capacity

were features of ICU diaries (and also ‘self‐care diaries’and the SCD),

there was a sense that it was more of a medical plan for the benefit of

professional care providers and not so much a self‐care and self‐

advocacy tool for patients. The lack of a self‐care and self‐advocacy

focus was also evident in the literature describing care preferences

associated ‘biographical approaches’, which tended to focus on

enabling care providers to acknowledge and appreciate the life of

their patient rather than enabling them to address their patient's care

needs more directly. The lack of a patient focus and direct approach

to generating and managing personalised care plans (as opposed to

medical plans) reflects a lack of understanding of the difference

between point‐in‐time (i.e., synchronic) care negotiations, and across‐

time (i.e., diachronic) ebbing and flowing of care experiences, needs

and preferences. ICU diaries (and perhaps other ‘self‐care diaries’)

could be used to complement ‘biographical approaches’to care and

serve as a tool to support construction and application of Care

Biography (in both ICU and other care settings). However, it is

essential to ensure that context, ownership, codesign, and purpose

are clear to both patients and healthcare professionals.

3.3 |Key themes from the literature

3.3.1 |Meaningfulness and existential coping

Inductive thematic analysis of the literature identified revealed five

overarching themes, which inform the development of a list of

defining attributes of Care Biography. The theme of Meaningfulness

and Existential Coping (i.e., helping a patient to consolidate their sense

of identity and what matters to them) frequently emerges from

applications of a ‘biographical approach’across multiple care

contexts. In the context of palliative care, according to Lindqvist

et al. (2015), biographical approaches are ‘recognised as having

profound therapeutic potential in a variety of ways, with the common

denominator of assisting people to create meaning through the

act of storytelling’and constitute ‘a nonpharmacological method for

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addressing existential issues’(p. 41). They are also often associated

with addressing conditions such as depression, distress, grief and

loneliness, by enabling patients to gain a sense of meaning out of

their condition (Hesse, Forstmeier, Mochamat, et al., 2019). In the

context of aged and dementia care, Clarke (2000) points out that

biographical approaches enable carers and patients ‘to facilitate an

assessment of the present, a re‐evaluation of the past, and plans for

the future’(p. 429). As was the case with palliative care, they also

offer an alternative to medical and pharmacological approaches to

dementia care (McGreevy, 2016).

When considering the purpose of ICU diaries, the theme of

Meaningfulness and Existential Coping is the central theme. ICU diaries

help patients to make sense of their time in ICU by filling in memory

gaps, which can have significant therapeutic benefit, particularly in

addressing psychological disturbances, notably, PTSD (Egerod &

Bagger, 2010; Egerod et al., 2011; Ewens et al., 2015; Jones

et al., 2010,2012; Nielsen et al., 2018). Tavares et al. (2019) state

that ICU diaries enable a patient to ‘assign meaning and coherence

and to chronologically order the period of time when memories are

absent or distorted’(p. 165).

3.3.2 |Empathy and understanding

Clarke (2000) points out that biographical approaches in aged care

often ‘emphasise that the attitudes, interests, and desires of older

people are the culmination of a lifetime of experiences’(p. 429), and

as Pope (2012) points out, this enables care providers to ‘discover the

person behind the patient’(p. 35). Egerod et al. (2011) point out that

ICU diaries describe patient illness ‘in everyday language with a

compassionate tone rather than the emotionally neutral and high‐

technology vernacular of conventional hospital journaling’(p. 1922).

ICU diaries also help to facilitate dialog and communication between

care providers, patients, and family members. For example, in a study

by Aitken et al. (2017), ICU diaries were found to be a ‘tool to

promote communication between health care workers and family’

(p. 276). Similarly, according to Nielsen et al. (2018), ‘diaries co‐

authored by relatives and staff have been shown to facilitate

information and communication between staff and relatives…making

ICU staff better understand relatives’vulnerability’(p. 2). In another

study by Nielsen et al. (2019), it was stated that ICU diaries not only

‘help patient and relatives to discuss, compare and share their ICU

experiences’but also enables ICU nurses to ‘move from a technical

focus to more personal involvement as the patient recovers’

(p. 1297). The theme of Empathy and Understanding is also an

important part of education and training for healthcare professionals,

a point highlighted in McMillan's (2011) commentary.

3.3.3 |Promoting positive relationships

This theme emerged frequently in papers that discussed biographical

approaches in aged and dementia care. For example, in a systematic

review by Menn et al. (2020) it is stated that ‘biographical approaches

in care facilities conducted in groups can provide support and

improve relationships, preventing the feeling of loneliness…and

potentially leading to an improved QoL’(p. 2). Such approaches often

involve specific interventions such as the creation of memoirs or life

story books facilitated by care providers, which according to Pouchly

et al. (2013) can be done ‘collaboratively with the individual, or with

their close family and friends’(p. 117). Day and Wills (2008) point out

that the creation of life story books ‘increases socialisation for those

involved by communicating, sharing and listening to stories’(p. 23). In

the context of palliative care, the theme of Promoting Positive

Relationships is closely aligned with the themes of Meaningfulness and

Existential Coping, and Empathy and Understanding. These alignments

are highlighted by Beasley et al. (2015) and also by Hesse, Forstmeier,

Cuhls, et al. (2019) who in their study describe the training of

volunteers for a palliative care intervention as consisting of

‘developing a trusting relationship with the patient, accompanying

the patient and the family, providing psychosocial support, dealing

with death and dying, facilitating communication and helping with

social, ethical, and spiritual issues’(p. 2).

3.3.4 |Consideration of social and cultural contexts

The Social and Cultural Contexts in which care recipients are situated

also emerges as a key theme. For example, in the context of palliative

care, Lindqvist et al. (2015) states that ‘biographical approaches

generally rely on some form of life story, in which a set of

relationships are explored between the person and his or her cultural

milieu’(p. 41). In a study of blog narratives of people with dementia

(and their carers), Kannaley et al. (2019) point out that illness

narratives are ‘simultaneously social and personal’and ‘inform the

identity and account for the experiences of the author’(p. 3073).

Clarke (2000) states that ‘the biographical approach views the later

decades of life as a time of ongoing development and self‐

determination, rather than a time of withdrawal and disengagement

from society’(p. 429). Surr (2006) points out that ‘relationships with

others, the broader social context in which individuals are situated

and narrative and storytelling’(p. 1720), play a crucial role in

biographical approaches to dementia care.

3.3.5 |Self‐care

The theme of Self‐Care emerged primarily in those articles that

mentioned ‘care diary’or more specifically, ‘self‐care diary’. The term

‘self‐care diary’often referred to a method or tool for obtaining

information from patients as part of study methodology (e.g., the use

of the SCD). However, there were also several papers that used the

term to refer to interventions or resources for patient self‐care for a

range of conditions including asthma, type 2 diabetes (T2D), spinal

muscular atrophy (SMA), oral health, cardiac health, type1 diabetes

(T1D) during pregnancy, and back pain. For example, in a study by

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Sabzghabaee et al. (2012), a self‐care diary was used as a resource to

‘educate the patient about their asthma and its management’(p. 67).

In a study by Zhu et al. (2021), patients with T2D were provided with

a self‐care diary that ‘consisted of items assessing the three main

components of self‐care among patients with T2D: physical activity,

eating behaviour, and medication compliance’(p. 33). In a study by

Linden et al. (2018), pregnant women and young mothers with T1D

were given a self‐care diary ‘for self‐reported monitoring of blood

glucose, insulin doses, diet, activities and daily mood measures’

(p. 233). Interestingly, the notion of Self‐Care emerging from all of the

articles that mention ‘self‐care diary’, is a highly individualistic and

context or condition‐specific notion. It did not include consideration

of a patient's broader care network (including family members or

friends) and only pertained to a limited range of care needs over a

limited period of time associated with the duration of a particular

condition or illness.

3.4 |Defining attributes of care biography

The theme of Meaningfulness and Existential Coping identified in the

literature reiterates the importance of care that accords with a

patient's personal goals, values, and identity. Thus, the concept of

Care Biography can be understood as enabling a person to achieve a

sense of meaning, purpose, and selfhood, in how they are cared for

throughout their life. The theme of Self‐Care from the literature

implies that patients have an important role to play in their own care,

reiterating the importance of a person's self‐care capacity, capability,

care preferences and care planning. These ideas highlight the

centrality of self‐care agency, a notion that is implicit across all three

attributes of the CLCT definition of Care Biography but requires

further explication and elaboration. Self‐care agency refers to a

person's ability to make decisions and act in ways that promote their

health and well‐being. Such an ability does not consist solely of a

person's own capacities and capabilities. It is acquired over time

through learning, development, and acquisition of resources, all of

which are dependent on their environment, in particular, the various

relationships they have with their broader care network (Lawless

et al., 2021). Hence, self‐care agency is a relational notion

(Burkitt, 2015) and Care Biography can be understood as a tool to

promote self‐care agency.

A Care Biography that captures both relevant objective

information (e.g., medical information, care history, care providers

and care networks), and relevant subjective information (e.g.,

personal preferences, goals, values, and social and cultural identity)

enables a deeper understanding of a patient's their care needs, which

includes the Social and cultural Contexts that shape those care needs.

This can then facilitate Empathy and Understanding, which can in turn

promote Positive Care Relationships necessary for self‐care agency.

The literature continues to emphasise the role of quality interactions

and communications in promoting positive care relationships across

various care contexts (Allande Cussó et al., 2021,2022; Feo

et al., 2023; Kwame & Petrucka, 2021; Tieu & Matthews, 2024).

Biographical approaches to care and the use of instruments such as

care‐diaries, can facilitate such interactions and communications

because they provide carers with a deeper understanding of the

patient as a person. However, as our analysis revealed, such

approaches and instruments may be limited in how much relevant

information is captured. They also tend to be initiated, directed, and

managed primarily by professional care staff, which limits the extent

to which patients can be actively engaged in their own care and thus

agents of their care. In contrast, a Care Biography is an instrument

that captures all the relevant information about a patient and

empowers them to actively engage with their broader care network

to receive care that accords with their unique individual needs.

Based on the critical attributes of the CLCT definition of Care

Biography and key themes from our analysis of the literature on

related concepts, the defining attributes of Care Biography can be

divided into two broad categories, namely, purpose and function of

promoting self‐care agency, and the narrative form and content of

the relevant documentation (Table 3).

3.5 |Model cases and potential applications

Given the novelty of the concept of Care Biography, we did not

identify any existing case examples in the literature that would

constitute model cases. However, some of the related concepts

analysed and discussed above are associated with applications that

might constitute similar or borderline cases (we also describe some

additional examples in the following section). Here, we outline

several potential applications of Care Biography (in nursing theory,

cardiovascular care, aged care, and cancer care), and potential

applications for further exploration and testing in transitional care,

and palliative and end of life care (Table 4). These examples were

developed through discussion among all authors, each of whom has

specific expertise in a particular research discipline and/or clinical

field.

3.6 |Borderline, related and illegitimate cases

The examples of ‘biographical approaches’to care, ‘self‐care diaries’,

and ‘ICU diaries’, may constitute related cases. The notion of a ‘care

diary’as a method or tool used to record specific health‐related

information over a specific period of time (which includes the SCD)

does not relate to the concept of Care Biography and thus

constitutes a borderline case. There are also other concepts and

examples that do not qualify as Care Biographies (or its application)

but share some important similarities, and in particular, converge with

the ethical and humanistic ethos underpinning Care Biography. For

example, ‘narrative based medicine’advocates for the integration of

objective empirical evidence with subjective clinical expertise linked

to a narrative and hermeneutical understanding of a patient's lived

experience of illness and associated holistic care needs (Greenhalgh &

Hurwitz, 1999; Greenhalgh, 1999). Similarly, ‘narrative nursing’

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describes how nurses can engage in dialog or story telling about

meaningful nurse–patient relationships as part of training and

professional development. It enables them to develop and foster a

narrative understanding of a patient's lived experience of illness and

care needs and equips them with the skills to elicit patient

perspectives on health and illness, which enables them to tailor care

provision accordingly (Fitzpatrick, 2021). These ideas converge on

the notion of ‘digital story telling', which describes a knowledge

translation (KT) method to promote a more comprehensive under-

standing of patient perspectives, lived experience, and holistic care

needs through the creation of muti‐media presentations (e.g., video

clips). The process enables greater consumer engagement and shared

decision making (Park et al., 2021; Pu et al., 2022). A key point on

which these examples converge with Care Biography is the need to

shift away from a unidirectional approach in how care‐related

information is applied in care practice, to a bidirectional approach

in which care‐related information from both care providers and

patients is applied in care practice as part of a collaborative effort.

Such a shift is necessary to ensure that care is appropriately

individualised, meaningful, and patient directed, which is the primary

goal of Care Biography application.

3.7 |Antecedents and consequences

The main antecedent of Care Biography is the capture of a broad

range of patient biographical information (both objective and

subjective) that informs subsequent care planning and provision.

This may include information about disease, illness, developmental

changes, life events, as well as a range of relevant biological, genetic,

psychological, social, and cultural information. Such information is

typically captured in various and often fragmented ways, both

formally as part of healthcare systems and records, and informally as

part of personal records (e.g., personal journals and social media

profiles). The additional and perhaps most important antecedent is a

conceptual one, namely, the recognition that such information can be

integrated and compiled into a meaningful narrative to guide ongoing

care planning and provision. While care plans draw from relevant

patient biographical information, they are often focused narrowly on

specific health outcomes and goals related to specific conditions over

a defined period of time. Hence, they lack the degree of

personalisation, holistic integration, and temporal or diachronic

integration that defines application of Care Biography. If the goal is

to provide care that is appropriately patient or person‐centred, then

we need the conceptual and practical resources to provide carers

with a deeper understanding of the patient and their care needs. This

requires that relevant biographical information (objective and

subjective) is used to inform care provision and confer on them a

sense of ownership of their care. Thus, on the one hand, Care

Biography provides us with a powerful conceptual tool to understand

the complexities of patient or person‐centred care, and on the other

hand, it serves as a practical tool to help us improve the content and

quality of care records and care plans. Genuine patient or person‐

centred care and self‐care agency emerges as a consequence.

3.8 |Empirical referents

Empirical referents of Care Biography will consist of various ways in

which Care Biographies are developed, constituted, and applied in

practice where it will require multidisciplinary teams and care

networks working together, communicating, coordinating, and

assisting patients to navigate the challenges and complexities of

their care journey. The model cases described in Table 4capture a

range of potential empirical referents that relate to the quality and

form of the biographical information designed to inform subsequent

care planning and provision. Care Biographies must be organised and

structured as a coherent narrative capturing relevant biographical

information and must also be meaningful to a patient, endorsed and

owned by them. At the core of Care Biographies is the relationship

between the patient and care professionals. There are tools being

developed to measure such empirical referents (Conroy et al., 2023;

Pinero de Plaza et al., 2023).

4|DISCUSSION

The concept analysis in this paper has enabled us to further develop

and refine the CLCT definition of Care Biography to capture the

relevant humanistic and ethical dimensions of care. A Care Biography

typically takes the form of a living document that captures the ebb

and flow of a patient's care needs over the life course. It enables the

TABLE 3 Defining attributes of care biography.

Purpose and function Form and content

•Promotes self‐care agency (where agency is understood in a

relational sense).

•Enables a deeper understanding of the patient to promote positive

care relationships.

•Guides comprehensive, holistic, and personalised care in various

contexts and settings over extended periods of time.

•Enables the patient and carer(s) to anticipate, plan for, and address

care needs that arise in future.

•Describes a patient's self‐care capability and capacity and care

preferences.

•Describes a patient's care relationships and care networks.

•Contains relevant objective and subjective information about the

patient and their sociocultural background.

•Contains a retrospective record of, and a prospective guide to, care

provision.

•Primarily takes the form of a cohesive narrative that is owned by the

patient but co‐created and endorsed by both patient and carer(s).

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TABLE 4 Model cases of application of care biography.

Disciplinary/clinical perspective Model case of application of care biography

Nursing Theory and Humanistic Care (MT; TC; JL;

RF; ML; APP; RAC; ALK)

Adapting Electronic Health Records (EHRs) to incorporate relevant biographical information

about patients –Such information will include:

−Personal goals and values

−Cultural background and sensitivities

−Religious and spiritual care needs

−A patient's care network comprised of both professional care providers and informal carers

(i.e., family, friends and social support network)Relevant biographical information entered

into EHRs shall be reviewed and endorsed by patients and their care network.

Cardiovascular Care (JH) Person‐centred care is a fundamental pillar of integrated cardiovascular care, which can be

facilitated by incorporating the defining attributes of Care Biography into Clinical History

Taking and Assessment. This would involve:

−Engagement with patients to identify needs, values, preferences, and self‐care capability

and capacity

−Collaboration with patients to generate and manage their personalised care plan (e.g.,

incorporating activities regarding adherence, risk factor and lifestyle modification)

−Redesign of conservative care practice models to promote self‐care through proactive

engagement with a patient's care network, requiring multidisciplinary collaboration and the

use of digital technology to support this approach

Aged care (SG; KL; JL; ML; LPL) “My Wellbeing Journal”has been developed to facilitate personalised care planning and goal

setting for people living with one or more chronic conditions (Lawless et al., 2023). The tool

could help by:

−Providing a record of a person's health and wellbeing goals

−Assisting with prioritising how a person's goals align with their self‐care and the care they

receive from others

−Supporting conversations between the person, their caregivers, and healthcare team about

their goals and preferences'My Wellbeing Journal' exists in the form of a booklet but can be

converted into a digital format.

Flinders Assistant for Memory Enhancement (FAME)—A one‐stop digital platform developed to

deliver nonpharmacological interventions to delay the onset of dementia and technologies to

support daily living (e.g., image‐based phone/video calls to connect with user's family and care

network, calendar) for older adults with mild cognitive impairment.

Further information on FAME:

https://blogs.flinders.edu.au/caring-futures-institute/2019/11/19/digital-health-teams-

solution-provides-day-to-day-support-for-memory-loss/

https://www.youtube.com/watch?v=ceU5czhMnhA

FAME is being re‐engineered to include a wider care network (or 'care ecosystem') involving of

family, clinicians, friends, and broader social networks. It aims to enable clients to interact with

their care networks to facilitate delivery and adherence to interventions tailored to their unique

care needs. Additional stakeholders in the care network can be identified, and their unique

role/s in empowering and supporting the client are developed and refined through co‐creation.

Transitional Care (AC) A model of care to promote continuity of care –A transitional and enrichment service between

a local health network and residential aged care provider in South Australia is under

development and awaiting further testing. The service involves:

−Extensive collaboration, consultation, and support between acute care staff and residential

aged care staff

−Integration of geriatric in‐home programmes and transitionary care programmes

−A digital platform (VIVA) to facilitate and deliver the programme

Ongoing development and testing of the digital platform VIVA is taking place across all

community services within a local health network and its divisions of Aged Care, Rehabilitation

and Palliative Care. The application is designed to:

−Enable all services across divisions to work on patient and carer driven goal setting

−Allow patients to be able to input information into VIVA itself (e.g., relevant biographical

information determined by them)

−Be accessed as part of any service they interact with across the divisions

Cancer Care (CT) There is growing awareness of the need for 'cancer navigators' to assist cancer patients to

navigate the technical and logistical complexities across their care journey (Chan et al., 2023).

Cancer Survivorship Care Plans (SCPs) have been used to support ongoing care and navigation

for cancer survivors for approximately 20 years but require refinement to meet the complex

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patient and their carers to develop a care plan that integrates prior

care history with future care trajectories in a comprehensive, holistic,

and personalised form. A thoroughly comprehensive Care Biography

would capture relevant information from the moment of birth (or

perhaps even during gestational development) all through to the end

of life. This would encompass a range of objective information (e.g.,

medical information, care history, care providers and care networks),

and subjective information (e.g., personal preferences, goals, values,

and social and cultural identity). It would also serve as a repository of

personal reflections on the experiences and challenges faced

throughout a patient's care journey. The information would be

integrated across time in meaningful and appropriate ways to

constitute a cohesive narrative developed and endorsed by both

patients and their carers. It would capture the way in which a person

and their care needs change over the life course and how those

changes are linked to relevant care networks, transitions, and

trajectories. It would be owned by the patient and used by them in

conjunction with their carer(s) and care network to negotiate care at

various stages of life and in response to various changes in health and

care needs throughout their life. Previous studies have shown that

adverse events or reactions linked to care provision could have been

avoided if staff had more information about the patient (Andersson

et al., 2015; Van Gaal et al., 2014). Thus, it could also capture relevant

information to ensure that such adverse events or reactions can be

avoided in future.

A Care Biography also captures the crucial role that care

networks play throughout a person's life, not only in assisting them

with their care needs but also in helping them navigate various

complexities and logistical challenges. Meeting a person's care needs

requires assistance from an extended care network that includes

multidisciplinary teams over an extended period of time, something

that has only been recently recognised, for example, through calls for

more integrated care and specialist navigators to work with patients

over an extended care journey (Bulto et al., 2024; Chan et al., 2023;

Gallagher et al., 2022) and applications of patient journey mapping

(Bulto, Davies, et al., 2024; Joseph et al., 2023; Ly et al., 2021). A

Care Biography is thus a diachronic or temporally integrated

representation of the patient, their care needs, and their care

network, and can facilitate greater focus on integrated and

continuous (rather than episodic) approaches to care provision over

extended periods of time. It promotes a more holistic and humanistic

conceptualisation of the patient, one that upholds their identity and

agency, and thus enables both patients and carers to be in the best

position to plan care that is appropriately person‐centred. Ultimately,

it challenges our existing assumptions and ideas around care and its

goals, and situates it within a philosophical framework that enables

the practice of care to be more explicitly and effectively geared

towards promoting ‘the good life’.

4.1 |Limitations of study

While our literature review was comprehensive with regard to the

range of databases searched and selection of relevant search terms,

we note that there were several other search terms identified from

our initial typography that were not included in our search and

TABLE 4 (Continued)

Disciplinary/clinical perspective Model case of application of care biography

care needs of cancer patients and their carers. These documents comprise a treatment

summary, follow‐up care instructions, information on potential treatment related late effects

and care needs of cancer survivors, and are co‐developed by healthcare teams and patients—

Cancer SCPs can be developed further to include:

−Relevant personal history including care needs, care received, lived experience of cancer

and related illnesses

−Information regarding the biographical disruption of a cancer diagnosis and its treatment

−Information that enables a broad range of carers (both formal and informal) to provide

personalised and holistic care for people living with and beyond cancer

A cancer survivorship care plan that incorporates the defining attributes of a Care Biography will:

−Enable professional care providers, people living with and beyond cancer (and their broader

care network) to plan, support and navigate care across the cancer continuum and beyond

−Contribute to integrated support for people living with and beyond cancer across acute care

settings, primary care, community care, and social services

Palliative and End of Life Care (AC) Care Biographies enacted by interdisciplinary specialist palliative care teams have potential to

support safe and high‐quality palliative care in non‐specialist palliative care contexts and

settings. It offers potential to:

−Support patient's and informal carer's agency in matters of care, e.g., advance care planning

and end of life decision making

−Support informal carers in their roles and negotiations with health services, and in

integration of palliative care

−Build relationships with the public health palliative care movement's agenda to promote

death literacy, highlighting matters of sociocultural and community importance (as opposed

to matters of clinical importance framed in biomedicine)

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analysis, such as ‘care narrative’,‘care passport’and ‘personalised

care plan’. To include one or more of those terms and associated

literature would go beyond the scope of the current concept analysis

without necessarily contributing further to its aims. However, it is

possible that additional literature may contain concepts closely

related to Care Biography that can further inform our concept

analysis and perhaps provide additional related or actual cases of

Care Biography and its application.

5|CONCLUSION

There is growing need and support for ways to capture the

biographical and lived experiences of patients more consistently

and accurately, particularly through the use of emerging digital and

information technologies. The concept of Care Biography is novel in

the health and care literature, only described in part, but can serve as

a powerful tool for this purpose. It promotes a deeper, and more

integrated and holistic understanding of care needs over their life

course, facilitating care planning and decision making, and ultimately

empowering patients to be in control of how they are cared for

throughout their life. It helps transform healthcare into a collabora-

tive and empathetic journey, where patients are active agents in their

care and where their unique personal, social, and cultural identities

come to the fore. Ultimately, it provides an important conceptual and

practical tool to achieve and uphold the ethical and humanistic ideals

of care amidst increasing application of digital and information

technologies in care provision.

ACKNOWLEDGMENTS

This work was not supported by any funding. Open access publishing

facilitated by Flinders University, as part of the Wiley ‐Flinders

University agreement via the Council of Australian University Librarians.

CONFLICT OF INTEREST STATEMENT

The authors declare no conflict of interest.

DATA AVAILABILITY STATEMENT

The data that support the findings of this study are available from the

corresponding author upon reasonable request.

ORCID

Matthew Tieu https://orcid.org/0000-0003-3578-6579

Regina Allande‐Cussó https://orcid.org/0000-0001-8325-0838

Maria A. Pinero de Plaza https://orcid.org/0000-0001-5421-9604

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Human-centred AI for emergency cardiac care: Evaluating RAPIDx AI with PROLIFERATE_AI

Article

Full-text available

Apr 2025
INT J MED INFORM

Background Chest pain diagnosis in emergency care is hindered by overlapping cardiac and non-cardiac symptoms, causing diagnostic uncertainty. Artificial Intelligence, such as RAPIDx AI, aims to enhance accuracy through clinical and biochemical data integration, but its adoption relies on addressing usability, explainability, and seamless workflow integration without disrupting care. Objective Evaluate RAPIDx AI’s integration into clinical workflows, address usability barriers, and optimise its adoption in emergencies. Methods The PROLIFERATE_AI framework was implemented across 12 EDs (July 2022–January 2024) with 39 participants: 15 experts co-designed a survey via Expert Knowledge Elicitation (EKE), applied to 24 ED clinicians to assess RAPIDx AI usability and adoption. Bayesian inference, using priors, estimated comprehension, emotional engagement, usage, and preference, while Monte Carlo simulations quantified uncertainty and variability, generating posterior means and 95% bootstrapped confidence intervals. Qualitative thematic analysis identified barriers and optimisation needs, with data triangulated through the PROLIFERATE_AI scoring system to rate RAPIDx AI’s performance by user roles and demographics. Results Registrars exhibited the highest comprehension (median: 0.466, 95 % CI: 0.41–0.51) and preference (median: 0.458, 95 % CI: 0.41–0.48), while residents/interns scored the lowest in comprehension (median: 0.198, 95 % CI: 0.17–0.26) and emotional engagement (median: 0.112, 95 % CI: 0.09–0.14). Registered nurses showed strong emotional engagement (median: 0.379, 95 % CI: 0.35–0.45). Novice users faced usability and workflow integration barriers, while experienced clinicians suggested automation and streamlined workflows. RAPIDx AI scored “Good Impact,” excelling with trained users but requiring targeted refinements for novices. Conclusion RAPIDx AI enhances diagnostic accuracy and efficiency for experienced users, but usability challenges for novices highlight the need for targeted training and interface refinements. The PROLIFERATE_AI framework offers a robust methodology for evaluating and scaling AI solutions, addressing the evolving needs of sociotechnical systems.

A Cross-Sectional Study of the Perception of Individualized Nursing Care Among Nurses in Acute Medical and Perioperative Settings

Article

Full-text available

Oct 2024

Background/Objectives: Individualized nursing care allows for systematic assessment and intervention; considers a patient’s preferences, values, and context; and contributes to a positive care trajectory. However, its operationalization has proven to be challenging. This research aimed to evaluate nurses’ perceptions of individualized care and analyze their relationship with sociodemographic variables. Methods: A cross-sectional study was conducted on 122 eligible and registered nurses at a Hospital Center, in the Ophthalmology (operating room and inpatient ward) service, the Cardiology service, the Internal Medicine service, and the Medical Emergency Unit, for adults/older adults in Portugal. The nursing version of the Individualized Care Scale (ICS-Nurse) was used for the assessment, including three sub-dimensions: clinical situation, personal life situation, and decisional control over care-related decisions. Cronbach’s alpha and principal component analysis were used for the data analysis. The STROBE checklist was used to report this study. Results: No statistically significant differences were found based on the age, gender, level of education, or years of professional experience of the nurses within the sub-dimensions of individualization. The nurses overall had a good perception of the importance of individualized care (4.06 ± 0.46 ICS-A-NURSE) but faced difficulties in its implementation during the last shift they worked (3.97 ± 0.49 ICS-B-NURSE). Conclusions: The items considered to be of greatest importance were the response to the physical and emotional needs arising from illness and assistance in decision-making through educational instructions. Aspects related to the personal lives of patients, such as family inclusion in an individual’s care plan, everyday habits, and previous experiences of hospitalization, received the lowest scores. Recognizing priority areas for improvement in the individualization of nursing care can contribute to developing training programs and policies that promote a holistic approach. Future studies should consider patient outcomes related to their needs for individualization.

Measuring RAPIDx AI (AI-powered technologies). PROLIFERATE: An adaptable framework with tools to evaluate different processes, outputs, and products via participatory research

Presentation

Jun 2022

This presentation explains a complex-prediction modelling evaluation that can track and measure the usability and impact of an Artificial Intelligence (AI) as a clinical-decision-support (CDS): Rapidx AI. The evaluation considers the perspective of those embedded within the workflows of a randomised controlled trial (RCT) within 12 participating South Australian emergency departments. RAPIDx AI aims to improve patients' clinical management and outcomes for those presenting to hospitals with suspected cardiac chest pain (e.g., possible heart attack). The proposed evaluation looks at the RCT, so it does not test the clinical outcomes of RAPIDx AI but rather the end-user feedback concerning the algorithm uptake within the hospital workflows from the perspectives of a variety of stakeholders involved in this technically enhanced decision-making process.

Piloting Structural Equation Modeling for Fundamental Care Decision-Making Across Healthcare Settings

Preprint

Full-text available

Apr 2025

Predictive modeling has advanced healthcare management by informing operational and strategic decisions; however, such models often exclude the fundamental care elements that shape patients' experiences, thereby limiting person-centered, quality-driven decisions. This gap is addressed by piloting a predictive model grounded in the Fundamentals of Care (FoC) Framework, which captures how system-level and policy-level conditions ( Context of Care ) influence care outcomes ( Integration of Care ) through the clinician–patient Relationship . A cross-sectional, exploratory design was implemented across Spain (hospital-based care, n = 55) and Australia (community-based care, n = 32). A culturally adapted, 41-item patient-reported experience measure was developed to operationalize the FoC Framework’s three core dimensions. Structural relationships were tested using Consistent Partial Least Squares Structural Equation Modeling to assess model feasibility. Results indicate that the Context of Care significantly predicted Relationship in both countries (Spain: β = 0.33; Australia: β = 0.68), which strongly predicted Integration of Care (Spain: β = 0.84; Australia: β = 0.92), fully mediating the effect of Context , which had no direct influence on Integration . Findings highlight a consistent structural pathway: Context of Care → Relationship → Integration of Care . This pilot demonstrates the feasibility of integrating patient-reported experience data into predictive modeling grounded in fundamental care delivery theory, offering transferable insights into how system- and policy-level conditions shape care quality through the Relationship dimension. The model supports early-stage decision-making tools for quality improvement, workforce planning, and system design, emphasizing the importance of a Context of Care that enables clinician-patient Relationships to achieve effective Integration of Care .

Guest editor's closing of the annual special collection, 27th International Nursing Philosophy Conference proceedings in association with IPONS: Reimagining a nursing ecosystem in an uncertain world

Article

Oct 2024
Nurs Philos

Janice Gullick

Patient Journey Mapping: emerging methods for understanding and improving patient experiences of health systems and services

Article

Full-text available

Feb 2024
Eur J Cardiovasc Nurs

Patient journey mapping is an emerging field of research that uses various methods to map and report evidence relating to patient experiences and interactions with healthcare providers, services and systems. This research often involves the development of visual, narrative, and descriptive maps or tables, which describe patient journeys and transitions into, through and out of health services. This methods corner paper presents an overview of how patient journey mapping has been conducted within the health sector, providing cardiovascular examples. It introduces six key steps for conducting patient journey mapping and describes the opportunities and benefits of using patient journey mapping and future implications of using this approach.

‘I wasn't made to feel like a nut case after all’: A qualitative story completion study exploring healthcare recipient and carer perceptions of good professional caregiving relationships

Article

Full-text available

Oct 2023
HEALTH EXPECT

Background Professional caregiving relationships are central to quality healthcare but are not always developed to a consistently high standard in clinical practice. Existing literature on what constitutes high‐quality relationships and how they should be developed is plagued by dyadic conceptualisations; discipline, context and condition‐specific research; and the absence of healthcare recipient and informal carer voices. This study aimed to address these issues by exploring how healthcare recipients and carers conceptualise good professional caregiving relationships regardless of discipline, care setting and clinical condition. Design A qualitative story completion approach was used. Participants completed a story in response to a hypothetical stem that described a healthcare recipient (and, in some instances, carer) developing a good relationship with a new healthcare provider. Stories were analysed using reflexive thematic analysis. Participants Participants were 35 healthcare recipients and 37 carers (n = 72 total). Results Participants' stories were shaped by an overarching discourse that seeking help from new providers can elicit a range of unwanted emotions for both recipients and carers (e.g., anxiety, fear, dread). These unwanted emotions were experienced in relation to recipients' presenting health problems as well as their anticipated interactions with providers. Specifically, recipient and carer characters were fearful that providers would dismiss their concerns and judge them for deciding to seek help. Good relationships were seen to develop when healthcare providers worked to relieve or minimise these unwanted emotions, ensuring healthcare recipients and carers felt comfortable and at ease with the provider and the encounter. Participants positioned healthcare providers as primarily responsible for relieving recipients' and carers' unwanted emotions, which was achieved via four approaches: (1) easing into the encounter, (2) demonstrating interest in and understanding of recipients' presenting problems, (3) validating recipients' presenting problems and (4) enabling and respecting recipient choice. Participants' stories also routinely oriented to temporality, positioning relationships within recipients' and carers' wider care networks and biographical and temporal contexts. Conclusion The findings expand our understanding of professional caregiving relationships beyond dyadic, static conceptualisations. Specifically, the findings suggest that high‐quality relationships might be achieved via a set of core healthcare provider behaviours that can be employed across disciplinary, context and condition‐specific boundaries. In turn, this provides a basis to support interprofessional education and multidisciplinary healthcare delivery, enabling different healthcare disciplines, specialties, and teams to work from the same understanding of what is required to develop high‐quality relationships. Patient or Public Contribution The findings are based on stories from 72 healthcare recipient and carer participants, providing rich insight into their conceptualisations of high‐quality professional caregiving relationships.

My Wellbeing Journal: Development of a communication and goal‐setting tool to improve care for older adults with chronic conditions and multimorbidity

Article

Full-text available

Oct 2023
HEALTH EXPECT

Background Chronic conditions and multimorbidity, the presence of two or more chronic conditions, are increasingly common in older adults. Effective management of chronic conditions and multimorbidity in older adults requires a collaborative and person‐centred approach that considers the individual's goals, preferences and priorities. However, ensuring high‐quality personalised care for older adults with multimorbidity can be challenging due to the complexity of their care needs, limited time and a lack of patient preparation to discuss their personal goals and preferences with their healthcare team. Objective To codesign a communication and goal‐setting tool, My Wellbeing Journal, to support personalised care planning for older adults with chronic conditions and multimorbidity. Design We drew on an experience‐based codesign approach to develop My Wellbeing Journal. This article reports on the final end‐user feedback, which was collected via an online survey with older adults and their carers. Setting and Participants Older adults with chronic conditions, multimorbidity and informal carers living in Australia. Personalised care planning was considered in the context of primary care. Results A total of 88 participants completed the online survey. The survey focused on participants' feedback on the tool in terms of effectiveness, efficiency, satisfaction and errors encountered. This feedback resulted in modifications to My Wellbeing Journal, which can be used during clinical encounters to facilitate communication, goal setting and progress tracking. Discussion and Conclusions Clinicians and carers can use the tool to guide discussions with older adults about their care planning and help them set realistic goals that are meaningful to them. The findings of this study could be used to inform the development of recommendations for healthcare providers to implement person‐centred, goal‐oriented care for older adults with chronic conditions and multimorbidity. Patient or Public Contribution Older adults living with chronic conditions and multimorbidity and their carers have contributed to the development of a tool that has the potential to significantly enhance the experience of personalised care planning. Their direct involvement as collaborators has ensured that the tool is optimised to meet the standards of effectiveness and usability.

The Relational Care Framework: Promoting Continuity or Maintenance of Selfhood in Person-Centered Care

Article

Full-text available

Sep 2023

We argue that contemporary conceptualizations of “persons” have failed to achieve the moral goals of “person-centred care” (PCC, a model of dementia care developed by Tom Kitwood) and that they are detrimental to those receiving care, their families, and practitioners of care. We draw a distinction between personhood and selfhood, pointing out that continuity or maintenance of the latter is what is really at stake in dementia care. We then demonstrate how our conceptualization, which is one that privileges the lived experiences of people with dementia, and understands selfhood as formed relationally in connection with carers and the care environment, best captures Kitwood’s original idea. This conceptualization is also flexible enough to be applicable to the practice of caring for people at different stages of their dementia. Application of this conceptualization into PCC will best promote the well-being of people with dementia, while also encouraging respect and dignity in the care environment.

How and where does “care” fit within seminal life‐course approaches? A narrative review and critical analysis

Article

Full-text available

Sep 2023
J ADV NURS

Aims To map the concepts of the caring life‐course theory that are used in life‐course approaches from different disciplines; establish whether there is a common recognition of, or language used, to describe care in those life‐course approaches; and identify the role and contribution of care to the life‐course literature. Design This discursive paper uses a narrative review process to explore points of convergence and divergence between life‐course approaches and the caring life‐course theory. Methods Categories for analysis were developed deductively and inductively, focusing on the constructs of fundamental care, capacity and capability, care network, care transition, care trajectory and care biography. Results We identified four disciplinary perspectives: (1) life‐course sociology; (2) life‐course epidemiology; (3) lifespan developmental psychology; and (4) life‐course health development. While six core constructs of the caring life‐course theory were described, either explicitly or implicitly, in existing life‐course approaches, no single approach fully describes the role and contribution of care across the lifespan. Conclusion Life‐course approaches have largely neglected the contribution and role of care in informing the life‐course discourse. This review highlights the significance of care beyond traditional healthcare settings and recognizes it as a fundamental human need for well‐being and development, which can contribute to existing life‐course literature. Implication for the Profession and/or Patient Care There is a need to understand care as a complex system and embrace a whole‐system, life‐course approach to enable nurses and other healthcare professionals to provide high‐quality, patient‐centred care. Impact Incorporating care within a life‐course approach provides opportunities to integrate and deliver care centred around the person, their life transitions, trajectories and care networks, including informal carers and healthcare professionals. No Patient or Public Contribution Patients or members of the public were not involved in this study as it is a discursive paper based on the relevant literature.

Care Depersonalized: The Risk of Infocratic "Personalised" Care and a Posthuman Dystopia

Article

Full-text available

Aug 2023
AM J BIOETHICS

There is much speculation about diagnostic, treatment, and predictive applications of emerging technologies but relatively little consideration of how they might be used to address a person’s lived experience of illness and ongoing care needs. This is likely due to the greater weight or priority given to acute care needs and the role of medical treatment in care provision, but also reflects our limited vision of their potential application. Such limitations are not surprising given that we are still grappling with the complexities and nuances of achieving the ethical and humanistic ideals of care that address the hermeneutical, spiritual, relational, contextual, temporal, and agential dimensions of a person’s health and wellbeing. We highlight these ethical concerns in this commentary.

Patient navigation across the cancer care continuum: An overview of systematic reviews and emerging literature

Article

Full-text available

Jun 2023
CA-CANCER J CLIN

Patient navigation is a strategy for overcoming barriers to reduce disparities and to improve access and outcomes. The aim of this umbrella review was to identify, critically appraise, synthesize, and present the best available evidence to inform policy and planning regarding patient navigation across the cancer continuum. Systematic reviews examining navigation in cancer care were identified in the Cochrane Central Register of Controlled Trials (CENTRAL), PubMed, Embase, Cumulative Index of Nursing and Allied Health (CINAHL), Epistemonikos, and Prospective Register of Systematic Reviews (PROSPERO) databases and in the gray literature from January 1, 2012, to April 19, 2022. Data were screened, extracted, and appraised independently by two authors. The JBI Critical Appraisal Checklist for Systematic Review and Research Syntheses was used for quality appraisal. Emerging literature up to May 25, 2022, was also explored to capture primary research published beyond the coverage of included systematic reviews. Of the 2062 unique records identified, 61 systematic reviews were included. Fifty‐four reviews were quantitative or mixed‐methods reviews, reporting on the effectiveness of cancer patient navigation, including 12 reviews reporting costs or cost‐effectiveness outcomes. Seven qualitative reviews explored navigation needs, barriers, and experiences. In addition, 53 primary studies published since 2021 were included. Patient navigation is effective in improving participation in cancer screening and reducing the time from screening to diagnosis and from diagnosis to treatment initiation. Emerging evidence suggests that patient navigation improves quality of life and patient satisfaction with care in the survivorship phase and reduces hospital readmission in the active treatment and survivorship care phases. Palliative care data were extremely limited. Economic evaluations from the United States suggest the potential cost‐effectiveness of navigation in screening programs.

Effectiveness of nurse-led interventions versus usual care to manage hypertension and lifestyle behaviour: a systematic review and meta-analysis

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Full-text available

May 2023
Eur J Cardiovasc Nurs

Aim: This review aimed to investigate the effectiveness of nurse-led interventions versus usual care on hypertension management, lifestyle behaviour, and patients' knowledge of hypertension and associated risk factors. Methods: A systematic review with meta-analysis was conducted following Joanna Briggs Institute (JBI) guidelines. MEDLINE (Ovid), Emcare (Ovid), CINAHL (EBSCO), Cochrane library and ProQuest (Ovid) were searched from inception to 15th of February 2022. Randomised controlled trials (RCTs) examining the effect of nurse-led interventions on hypertension management were identified. Title and abstract, and full text screening, assessment of methodological quality, and data extraction were conducted by two independent reviewers using JBI tools. A statistical meta-analysis was conducted using STATA version 17.0. Results: A total of 37 RCTs and 9,731 participants were included. The overall pooled data demonstrated that nurse-led interventions may reduce systolic blood pressure (Mean difference -4.66; 95% CI -6.69, -2.64; I2= 83.32; 31 RCTs; low certainty evidence) and diastolic blood pressure (Mean difference -1.91; 95% CI -3.06, -0.76; I2 = 79.35; 29 RCTs; low certainty evidence) compared to usual care. The duration of interventions contributed to the magnitude of blood pressure reduction. Nurse-led interventions had a positive impact on lifestyle behaviour and effectively modified diet and physical activity, but the effect on smoking and alcohol consumption was inconsistent. Conclusion: This review revealed beneficial effects of nurse-led interventions in hypertension management compared to usual care. Integration of nurse-led interventions in routine hypertension treatment and prevention services could play an important role in alleviating the rising global burden of hypertension. Data registration: CRD42021274900.

Co-designing, measuring, and optimizing innovations and solutions within complex adaptive health systems

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Full-text available

Mar 2023

Objective To introduce, describe, and demonstrate the emergence and testing of an evaluation method that combines different logics for co-designing, measuring, and optimizing innovations and solutions within complex adaptive health systems. Method We describe the development and preliminary testing of a framework to evaluate new ways of using and implementing knowledge (innovations) and technological solutions to solve problems via co-design methods and measurable approaches such as data science. The framework is called PROLIFERATE; it is initially located within the ecological logic: complexity science, by investigating the evolving and emergent properties of systems, but also embraces the mechanistic logic of implementation science (IS) (i.e., getting evidence-based interventions into practice); and the social logic, as the study of individuals, groups, and organizations. Integral to this logic mixture is measuring person-centered parameters (i.e., comprehension, emotional responses, barriers, motivations, and optimization strategies) concerning any evaluated matter across the micro, meso, and macro levels of systems. We embrace the principles of Nilsen's taxonomy to demonstrate its adaptability by comparing and encompassing the normalization process theory, the 2 × 2 conceptual map of influence on behaviors, and PROLIFERATE. Results Snapshots of ongoing research in different healthcare settings within Australia are offered to demonstrate how PROLIFERATE can be used for co-designing innovations, tracking their optimization process, and evaluating their impacts. The exemplification involves the evaluation of Health2Go (the design and implementation of an innovative procedure: interdisciplinary learning within an allied health service—community-based) and RAPIDx_AI (an artificial intelligence randomized clinical trial being tested to improve the cardiac care of patients within emergency departments—tertiary care). Conclusion PROLIFERATE is one of the first frameworks to combine ecological, mechanistic, and social logic models to co-design, track, and evaluate complex interventions while operationalizing an innovative complexity science approach: the knowledge translation complexity network model (KT-cnm). It adds a novel perspective to the importance of stakeholders’ agency in the system by considering their sociodemographic characteristics and experiences within different healthcare settings (e.g., procedural innovations such as “interdisciplinary learning” for Health2Go, and tech-enabled solutions such as RAPIDx_AI). Its structured facilitation processes engage stakeholders in dynamic and productive ways while measuring and optimizing innovation within the complexities of health systems.

Exploring Patient Journey Mapping and the Learning Health System: Scoping Review

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Full-text available

Feb 2023

Background: Journey maps are visualization tools that can facilitate the diagrammatical representation of stakeholder groups by interest or function for comparative visual analysis. Therefore, journey maps can illustrate intersections and relationships between organizations and consumers using products or services. We propose that some synergies may exist between journey maps and the concept of a learning health system (LHS). The overarching goal of an LHS is to use health care data to inform clinical practice and improve service delivery processes and patient outcomes. Objective: The purpose of this review was to assess the literature and establish a relationship between journey mapping techniques and LHSs. Specifically, in this study, we explored the current state of the literature to answer the following research questions: (1) Is there a relationship between journey mapping techniques and an LHS in the literature? (2) Is there a way to integrate the data from journey mapping activities into an LHS? (3) How can the data gleaned from journey map activities be used to inform an LHS? Methods: A scoping review was conducted by querying the following electronic databases: Cochrane Database of Systematic Reviews (Ovid), IEEE Xplore, PubMed, Web of Science, Academic Search Complete (EBSCOhost), APA PsycInfo (EBSCOhost), CINAHL (EBSCOhost), and MEDLINE (EBSCOhost). Two researchers applied the inclusion criteria and assessed all articles by title and abstract in the first screen, using Covidence. Following this, a full-text review of included articles was done, with relevant data extracted, tabulated, and assessed thematically. Results: The initial search yielded 694 studies. Of those, 179 duplicates were removed. Following this, 515 articles were assessed during the first screening phase, and 412 were excluded, as they did not meet the inclusion criteria. Next, 103 articles were read in full, and 95 were excluded, resulting in a final sample of 8 articles that satisfied the inclusion criteria. The article sample can be subsumed into 2 overarching themes: (1) the need to evolve service delivery models in health care, and (2) the potential value of using patient journey data in an LHS. Conclusions: This scoping review demonstrated the gap in knowledge regarding integrating the data from journey mapping activities into an LHS. Our findings highlighted the importance of using the data from patient experiences to enrich an LHS and provide holistic care. To satisfy this gap, the authors intend to continue this investigation to establish the relationship between journey mapping and the concept of LHSs. This scoping review will serve as phase 1 of an investigative series. Phase 2 will entail the creation of a holistic framework to guide and streamline data integration from journey mapping activities into an LHS. Lastly, phase 3 will provide a proof of concept to demonstrate how patient journey mapping activities could be integrated into an LHS.

Care biography: A concept analysis

Abstract

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