EMPIRICAL STUDIES

Skin-to-skin care for dying preterm newborns and their
parents – a phenomenological study from the perspective of
NICU nurses

Ingjerd G. Kymre RN, Pediatric Nurse (PN), MA, PhD (Student)1 and Terese Bondas RN, PHN, MNSc, LicNSc,
PhD(Professor)2

1
PHS, Center for Practical Knowledge, University of Nordland/UiN, Bodø, Norway and

2
Institute of Nursing and Health, University of

Nordland, Bodø, Norway

Scand J Caring Sci; 2013; 27: 669–676

Skin-to-skin care for dying preterm newborns and

their parents – a phenomenological study from the

perspective of NICU nurses

Background: Consequences of separation between preterm

newborns and their parents have been discussed in many

aspects, thus skin-to-skin care (SSC) has become com-

mon practice in Scandinavian Neonatal Intensive Care

Units (NICUs) since the 1980s. The International work-

shop on Kangaroo Mother Care (KMC), 2009, recom-

mends implementation of continuous KMC as the gold

standard pervading all medical and nursing care, based

on empirical studies and clinical guidelines and they sug-

gest that KMC may be used during terminal care in

agreement with parents. Parents have a strong desire to

be near their child and give support and emotional com-

fort when the condition of the child requires it, and it

has been suggested that medical staff expect parents to

be with the neonates, and therefore, encourages them to

hold the neonate while it is dying. The practice of SSC at

the end of life has been under-researched, however.

Aim: The aim of this study, which is part of a larger

study on neonatal nursing care, was to describe the phe-

nomenon of how nurses enact SSC for dying preterm

newborns and their parents.

Design: A phenomenological reflective life world design.

Setting and participants: A purposive sample of 18 nurses

from three Scandinavian NICUs.

Findings: The essential meaning of the phenomenon was

expressed as strong belief in the urgency of SSC in pro-

viding mutual proximity and comfort for dying preterm

newborns and their parents. The nurses act upon this

belief and upon an engagement in securing the best pos-

sible present and future experiences of being close, in

which the SSC is understood as a necessary premise in

achieving the intended optimal conditions. The findings

are elaborated in relation to previous caring and nursing

research and phenomenology.

Conclusions: Skin-to-skin care for dying preterm newborns

and their parents is the preferred caring practice among

Scandinavian NICU nurses who consider it of major

importance to facilitate proximity and comfort through

SSC when the newborn is still alive. The authors suggest

this practical knowledge from NICU nurses perspective to

be acknowledged in discussions concerning end-of-life

care for preterm newborns and their parents and we rec-

ommend more formal establishment of this practice. Fur-

ther research is needed on parents’ experiences of skin-to

skin caring in this vulnerable end of life situation of

‘being with’ their dying newborn.

Keywords: Skin-to-skin care, end-of-life care, neonatal

nursing, dying preterm newborns, mutual experience,

proximity in dying, phenomenology, reflective lifeworld

research.

Submitted 30 March 2012, Accepted 31 July 2012

Introduction

Parents have a strong desire to be near their child and

give support and emotional comfort when the condition

of the child requires it (1). Consequences of separation

between preterm newborns and parents have been dis-

cussed in many aspects, thus skin-to-skin care (SSC) has

become common practice in Scandinavian Neonatal

Intensive Care Units (NICUs) since the 1980s. Positive

effects and benefits have been documented through

empirical studies worldwide since the first introductions

of the practice as Kangaroo Mother Care (KMC), inspired

by the Instituto Materno Infantil in Colombia after 1978

Correspondence to:

Ingjerd Gåre Kymre, PHS, Nordland University,

8049 Bodø, Norway.

E-mail: Ingjerd.gare.kymre@uin.no

© 2012 The Authors

Scandinavian Journal of Caring Sciences © 2012 Nordic College of Caring Science 669

doi: 10.1111/j.1471-6712.2012.01076.x

(2–7). Its main benefits are physiological stabilization,

thermal regulation and stimulation of maternal lactation

(2). Intermittent SSC, which means limited sessions, is

the most implemented method in affluent settings (5).

An expert group of the International Network, from the

7th International Workshop on KMC, 2009, recommends

implementation of continuous KMC as the gold standard

pervading all medical and nursing care, based on empiri-

cal studies and clinical guidelines (5). Decreased pain

response during painful procedures, positive effects on

sleep and improved brain maturation are documented

effects of KMC (5, 7). Other outcomes are psychosocial

aspects like improved parent–infant interaction (5). The

network report suggests that KMC may be used during

terminal care in agreement with parents (5).

A Norwegian study found that care offered to dying

infants and their families changed significantly in many

respects from 1987–1988 to 1997–1998 (8), which

reflected that parents were increasingly more present at

the time of the child’s death and involved in the process

to forgo life support. An increase in the proportion of

dying infants for whom withholding or withdrawal of life

support preceded their death was found. An American

study from the period 1999 to 2008 found that the pri-

mary mode of death in their NICU was the withdrawal of

life-sustaining support (9). Those findings may represent

a trend, and exemplify elements related to the back-

ground of this study context, which concerns situations

in NICUs where medical and nursing staff and the par-

ents realise that the preterm newborn’s condition is not

compatible with life or a decision has been made to stop

life-supporting treatment.

When the neonate is dying, medical staff expected par-

ents to be with the baby, and encourage the parents to

hold him/her (10). According to Armentrout (11), par-

ents have an intense need to carry their deceased new-

born with them as they move forward with their lives,

and she emphasised the importance of providing parents

with an opportunity to spend time with their infant as a

member of the family, without all the tubes and wires.

However, studies concerning the phenomenon of practic-

ing SSC for dying preterm newborns and their parents

are limited.

Aim

The aim of this study, which is part of a larger study on

neonatal nursing care, was to describe the phenomenon

of how nurses enact SSC for dying preterm newborns

and their parents.

Method

The approach that was chosen to this study is reflective

lifeworld research, as developed by Dahlberg, Dahlberg

and Nyström (12), which in its turn is based on the phe-

nomenological philosophy of Husserl and Merleau-Ponty.

The approach assumes an open attitude to the phenome-

non, in this case the nurses’ relationship to SSC in dying.

The aim of lifeworld research is to describe and elucidate

the lived world in a way that expands our understanding

of human being and human experience, and the clarifi-

cation of meaning as it is given (12). Here, it means artic-

ulating what is at stake for nurses when they encourage

SSC between dying preterm newborns and their parents.

The lifeworld refers to the world as experienced. Within

this approach, it is central to illuminate the essence or

structure of meanings that characterises the phenomenon

(13). According to Dahlberg, the essences are their phe-

nomena and the phenomena are their essences. The

research challenge for this study has been to illuminate

the essential structure from this particular context of SSC

to find the style of this particular phenomenon.

Participants

A purposive sample of 18 nurses from three NICUs in

Sweden, Denmark and Norway, (six from each) were

interviewed at their workplace. They were selected by unit

leaders based on the criteria that they were willing to par-

ticipate and were available to be interviewed during two

selected days and afternoons. Nurses who had been work-

ing in a NICU for more than 5 years were preferred. All

available nurses were female, though this was not a crite-

rion. The Swedish nurses had been practicing 3–24 years

(median 13) in a NICU, the Norwegian; 4–22 years (med-

ian 11) and the Danish; 7–22 years (median 12). 12 nurses

had a higher degree or education in paediatric, neonatal,

intensive, surgery or public health nursing, NIDCAP-edu-

cation or other specialized courses. NICUs were selected

because they showed a commitment, through homepages

or in other ways, to SSC as a part of their practice. The

three were all large units. Data collection in three different

countries was meant to possibly represent variations of

experience and meaning.

Interviews

The nurses were asked to describe their lived experiences

concerning the phenomenon that was chosen (12, 14).

The first author carried out the interviews. 17 of the 18

participants answered yes to the opening question: ‘Have

you ever brought a preterm newborn to a parent’s body

for SSC when you knew it was going to die?’ The last

participant had been present when such situations took

place. To find out what they considered important, the

next question was: ‘Can you tell me about one or several

such situations?’ Probing questions were asked to obtain

details, and to clarify unclear statements. The participants

could more or less in detail remember situations of caring

670 I.G. Kymre, T. Bondas

© 2012 The Authors

Scandinavian Journal of Caring Sciences © 2012 Nordic College of Caring Science

for parents and newborns within this context. The inter-

views took place in November and December 2009, and

the digitally recorded material was transcribed verbatim

during spring 2010. None of the authors had any connec-

tion to the selected NICUs.

Ethical considerations

This study was approved by the Regional Ethical Com-

mittee (15) and the Norwegian Social Science Data Ser-

vices (16), which reviews projects based on guidelines for

research ethics. The research is in line with the ethical

guidelines for nursing research in the Nordic countries

(17). The material was stored according to the guidelines

of the Norwegian National Committee for Research Eth-

ics in the Social Sciences and the humanities, NESH (18).

Permission to carry out the study was obtained from the

head nurses or physician of the hospital units. The nurses

had received a letter that introduced them to the aim of

the interview. Permission to record the interviews was

given from each participant, and participants were

assured that the information would be treated confiden-

tially. The participants were informed about their right to

withdraw from the study at any time.

Analysis

In line with Dahlberg et al. (12), the entire descriptions

were initially read to get a sense of a whole. Preunder-

standing, including personal beliefs and theory drawn

from personal experience with the phenomenon was set

aside in the sense of ‘bridling’, to allow the essential

meaning of the nurse’s utterances to manifest them-

selves. The main point of bridling is to bring us closer to

the meaning of the phenomenon without limiting the

research openness (12).

The descriptions were divided into units of meanings,

which sometimes made it necessary to break up signifi-

cant shifts in meaning. Clusters of descriptions were anal-

ysed and organized, and constitutive elements that

described various meanings to the phenomenon were

identified. A new whole was written to emphasise the

essence of the phenomenon, having in mind that accord-

ing to Dahlberg (13), describing essences is a clarification

of meaning as it is given, and any meaning that we dis-

cover belongs to the phenomenon. The phenomenon

being analysed was SSC for dying preterm newborns and

their parents, and the research process led to a new writ-

ten understanding of the phenomenon’s essential mean-

ing of parts and whole.

Findings

The various and rich descriptions of the phenomenon

indicated that independent of three different participating

Scandinavian countries, the essential meaning of the

phenomenon was expressed as a strong belief in the

urgency of SSC in providing mutual proximity and com-

fort for dying preterm newborns and their parents. The

nurses act upon this belief and upon an engagement in

securing the best possible present and future experiences

of being close, in which the SSC is the preferred caring

practice and is understood as a necessary premise in

achieving the intended optimal conditions for mutuality.

The notion of loss was connected to an importance for

parents of having been close to or with the preterm new-

born for being able to articulate and acknowledge the

meaning of their loss. To provide this aspect, tubes and

wires were removed after the transfer to the parent’s body,

after establishing skin-to-skin contact, sometimes very

quickly because of the newborn’s poor medical condition.

Expressing strong belief

Strong belief was expressed through the ways nurses

described how they reasoned, acted and gave SSC prior-

ity. The notion ‘I believe’ was used, following gestures

underlining strong belief and engagement. Furthermore,

this strong belief was expressed as a commitment in the

context of caring rather than in the context of treatment:

‘I believe it is good for the newborns because I have seen

well-being in preterm newborns receiving SSC so many

times,’ exemplifies how belief is expressed, as well as ‘I

just believe instinctively that dying newborns should not

be alone, but in the arms.’ Alone means in the incubator

or not close to another body. Words indicating a belief in

what are the best possible ways to act were used gener-

ally through the descriptions. ‘She laid skin to skin con-

stantly through two days and nights because we thought

that every moment was her last’ and ‘We have taken out

babies from the incubator because we know there is no

way back’, are examples where an explanation justified

with a ‘because’ indicates an implicit belief in facilitating

SSC as the right thing to do.

Realizing urgency in transferring, and limited, valuable time

for ‘being with’

A quotation that exemplifies how a decision to facilitate

SSC is made without dwelling is, ‘Sometimes I grasp the

urgency of parent’s holding the newborn when it is still

moving.’ When it is realised that the newborn is going to

die, or a decision is made to stop life-supporting treat-

ment, there is no doubt among the nurses asked about

transferring the newborn close to its parent’s body, skin

to skin. ‘The preterm newborn should have the opportu-

nity to be with its parents before passing away,’ a nurse

claimed with an extra emphasis on the notion ‘should’.

Urgency was expressed in terms of giving SSC priority

by describing how the tracheal tube is kept until the

A phenomenological study from the perspective of NICU nurses 671

© 2012 The Authors

Scandinavian Journal of Caring Sciences © 2012 Nordic College of Caring Science

dying newborn is placed against a parent’s bare chest to

secure that the moment of dying takes place there when

the newborn is still alive. Pulse frequency and other per-

ceptual parameters sometimes indicate limited time and

that the newborn will die very soon, and several nurses

said, ‘We always facilitate SSC if we know the newborn

will not survive.’ In contrast to keeping the tracheal tube,

examples of removing it before transferring from the

incubator were described as stressful and less optimal;

‘The newborn died at once, so it was more dramatic and

shocking than we had expected, – they should have had

more time together.’

A concern about SSC while keeping the newborn alive

beyond a necessary hospital transfer was described, as

well as the concern of not achieving it, and it was

expressed in the following:

Together with the transport, team we made a deci-

sion not to transfer a newborn to another hospital

nearby, because if we did he would have been sepa-

rated from his parents. He would have been placed

into a transport incubator, and if so, the medical staff

would have the responsibility to keep him alive dur-

ing the time of the transport and you cannot do

that, so there was no prospect of moving him. We

let him lie skin to skin, and he took his final breath

on his mother’s chest.

The matter of dignity for the dying newborns was

raised as challenging in regard to simultaneous urgency

of the situation. This manifested itself in terms of a

rapid transfer from the incubator to the parent’s body

when the child is close to death. This included concerns

about the newborns feeling uncomfortable, concerns

that were identified in several descriptions. The transfer

became a problem to which nurses needed to attend by

being sensitive and careful in the practical act of trans-

ferring, in that SSC was still given priority. Occasion-

ally, the newborns do not die very quickly, but nurses

still characterize time with their parents as limited. The

time of being with, skin to skin, was also characterized

as valuable time, whether they managed to have this

time or not.

Expressing engagement

An engagement in skin-to-skin caring was expressed as

double-oriented from the nurse’s perspective. The

descriptions involved how nurses imagined the new-

borns’ experiences, consciousness and feelings, together

with observing and understanding physiological parame-

ters. ‘Actually, I do not know how conscious the new-

born is, or about its sensory experience,’ was expressed

by one nurse, and another said,

‘Because he was very ill, I am uncertain of what he

was sensing. I think it depends on the various physi-

cal condition and medications, if they are conscious

or in a doze, but I believe that the skin-to-skin con-

tact is good for the newborns’.

A projection of dying newborns having a feeling of being

scared was expressed: ‘I think that skin-to-skin contact

will help the newborn in not feeling scared of experienc-

ing the lack of air.’

An engagement with how parents experience the situ-

ation was as an example expressed by a nurse’s reflec-

tions about how difficult it must be not to have had the

chance to ‘hold your newborn close to your body, – I

think it is a deep-seated need in women to feel their

baby against their skin,’ she said.

Facilitating mutual proximity and comfort

A lived particular example of the SSC in a situation of

dying was this; ‘He was lying naked in her arms in that

the mother could see his face, he was just wearing a dia-

per, she lay in a bed and she held him into her skin

against her breast. Then we removed the tracheal tube.’

Experiencing closeness, touch and comfort is empha-

sized as an aim in terms of both giving and receiving

between the dying newborn and its parents. A receiving

dimension was exemplified by quotations such as ‘A

newborn should not have to die alone, but feel the prox-

imity’, and ‘The newborn receives proximity the short

time it is here’ Another said, ‘Both the parents and the

newborn should get the opportunity to feel the proximity

even if there is an awful incident going on’

In addition, a giving dimension was described as,

‘There is no other way that you can transmit that you

are close, more than through skin-to-skin contact’. and

‘They were with him, and could follow him on his way,

in that he was not alone.’

Skin-to-skin care was also expressed as a way to pre-

vent suffering. A nurse said that she hoped that the baby

would experience comfort just for a short while ‘to let

the baby perceive safety in hearing the mother’s heart

and voice’, and further, ‘as long as the baby is able to

feel the mother’s heart beat, he or she shall do so, I

think.’ Another description expressed the quality of SSC

as ‘Contact with skin is different from contact with fab-

rics,’ and feeling comfort skin to skin, noted some,

included absence of pain and hunger.

A few experiences exemplified exceptions from the

norm of the mutual dimension of closeness in that the

parents were not present, and nurses were with the new-

born in the dying process by holding and touching the

baby. They described themselves sitting with the new-

born in their arms, to let the parents have some sleep,

pointing to the importance of not leaving the newborn

alone in this condition, under any circumstances. A

nurse said, ‘It was important for the parents that the

newborn had skin-to-skin contact continuously, so I sat

with their dying newborn skin to skin against my arm.’

672 I.G. Kymre, T. Bondas

© 2012 The Authors

Scandinavian Journal of Caring Sciences © 2012 Nordic College of Caring Science

She had not told anybody, but it made her determined

afterwards never to let a newborn die without SSC, and

this was something she encouraged other nurses to prac-

tise as well. Another example concerned a newborn boy

who died suddenly, whose parents could not immedi-

ately be contacted by the medical staff, so that they could

get there when he was still alive. The nurse was glad to

tell them that she held his hand as long as he was alive,

because that was something, even if it was not optimal.

The thought of letting a newborn die alone in the incu-

bator gave her a feeling of emptiness.

Securing the best possible present and future experiences by

skin-to-skin care

The importance of securing that the parents had felt that

the baby was ‘real’ was underlined and the statement of

the newborn as ‘having been’ was connected to the

touch of a living body. One nurse said vividly:

When the parents have got the baby on their bare

skin on the chest, and when they have perceived his

presence, it is not something unreal, because he

actually was here (puts her hand on to her own

chest). I think it is an important matter, that they

have held him here.

This quotation, underlined by using a gesture, exempli-

fies that the experience of something real and actually

felt was connected to future experiences through

remembering.

The nurses used notions connected to the context of

SSC in how they understood a parent’s perspective of

bonding, accepting loss, adopting emotionally, the end as

something beautiful, feeling closeness, following him on

his way, peacefulness and crossing a border. Crossing a

border meant doing something not easily done or with

which one is not familiar.

‘I believe that it is meaningful that they get something

good to carry with them, something to remember. They

can say that they have lost a child’, one nurse said. Both

she and others referred to human touch skin to skin and

to the act of holding closely. This was often connected to

the idea of providing the best possible memories to look

back on. When the nurses reflected on how they imag-

ined the parents remembering, they mentioned both the

experience of holding close and the experience of the

‘picture’ of the newborn.

Collecting physical objects was described, while nurses

often help parents take photographs, footprints and

sometimes tiny locks of the baby’s hair to provide physi-

cal memories for remembering their newborn. Some

described placing the newborn’s body in a position that

makes it possible for the parent to see the face without

tube and tape, maybe for the first time ever. Remember-

ing a nice and peaceful ‘picture’ of the newborn was

emphasised, and described in terms of the look on the

babies face, skin colour, clean blankets and absence of

medical equipment covering the body. To provide time to

hold the baby when it is still warm was emphasised as

something that could give parents a better experience to

remember than the touch of a cold body.

In describing urgent situations, the environmental con-

ditions were generally not focused on as an important

matter. In contrast, one of the nurses had noticed the

impersonal room, but she got the impression that the

parents did not notice the environment, because they

focused on the holding experience. According to partici-

pants, there is an aspiration towards as much privacy as

the situation allows, even to the extent of transferring

other patients.

Persuading the parents to hold their dying newborn skin to

skin

The nurses described deviations in the experience of

what parents are able to cope with in their grief in losing

their newborn baby. They pointed to the importance of

careful approach to how they facilitate closeness. ‘We

cannot push them too hard’, was said. The very first SSC

is sometimes a threshold to cope with, especially if the

newborn is critically ill or dying. If parents have not held

the living baby, there is often more resistance to hold the

dead baby. One nurse said, ‘I will not push them if they

won’t, but I will always try to persuade them to hold the

child close’.

Events concerning parents who do not want to touch

or hold the dying newborn were among the descriptions.

‘Even when we meet parents who decline to hold the

deceased newborn, we try to convince them,’ a nurse

said. She continued, ‘We seldom meet parents who don’t

want to, but it makes us concerned’. Descriptions

referred to declining and showing fear in parents, and

how nurses meet this reaction with being concerned, and

if parents decline being close to the dying newborns,

nurses sometimes try to persuade them to hold them skin

to skin. But still, a few parents choose to keep aloof from

their dying newborn, and nurses save footprints, hair-

locks and pictures for them. However, the common expe-

rience among the participating nurses was that parents

are thankful for being helped to cross the threshold of

getting close to the child they were about to lose.

Discussion

The nurses’ strong belief in the urgency of SSC in provid-

ing mutual proximity and comfort for dying preterm

newborns and their parents, expresses the essential

meaning of the phenomenon.

Essential meaning is built upon constituents concern-

ing both the aspect of how the phenomenon was

focused, as well as the aspect of what the nurses focused

A phenomenological study from the perspective of NICU nurses 673

© 2012 The Authors

Scandinavian Journal of Caring Sciences © 2012 Nordic College of Caring Science

on that belongs to the phenomenon. How the phenome-

non is focused was expressed through strong belief and

engagement. What they focused on was expressed as

facilitating mutual proximity, securing the best possible

present and future experiences by SSC, and persuading

the parents to hold their dying newborn child skin to

skin.

This study is limited to research on how nurses act in

this context and therefore their perspective was illumi-

nated. According to Bondas (14), phenomenological

research has the potential to challenge previous knowl-

edge and practice in postpartum care and to develop new

caring science knowledge, evident for clinical caring prac-

tice. How can the essential meaning from NICU nurses’

caring practices in this study be elaborated within neona-

tal science, caring science and a phenomenological

approach? This work’s contribution will be illuminated in

the following.

In his Introduction to Phenomenology, Sokolowski

(19) wrote that the core doctrine is the teaching that

every act of consciousness we perform and every experi-

ence that we have is intentional, which in this discussion

is understood in terms of how meanings are something

essential intended. From this understanding, the constit-

uents that make the structural essence of this phenome-

non indicate that nurses are intending mutual closeness

and comfort both as a present and a future experience.

In recognizing the double caring focus by SSC in this

study, the relational aspect was emphasised. Expressions

of an urgent importance of facilitating both a giving and

a receiving dimension of the SSC emphasize nurses’

intentions to facilitate a mutual experience in parents

and dying preterm newborns in NICUs.

In 1959, Maurice Merleau-Ponty (20) wrote about

‘Chiasm’, as opposed to ‘For the other,’ meaning that

there is not only a me-other rivalry, but a co-functioning

relationship. Merleau-Ponty’s concept of flesh and chi-

asm captures the reciprocity of the mother–infant rela-

tionship, according to Wynn (21). She highlights those

thoughts by maintaining that the holding relationship

becomes reversible, in which mother and infant are hold-

ing and held and the touch is about touching and b

AUSTRALIAN JOURNAL OF ADVANCED NURSING Volume 36 Issue 4 45

SCHOLARLY PAPER

Exploring life history methodology in chronic illness:
a study in Relapsing Remitting Multiple Sclerosis

AUTHORS

Therese Burke
RN, MSCN
PhD Candidate, School of Nursing, The University of
Notre Dame, 160 Oxford Street, Darlinghurst, NSW,
Australia
therese.burke2@my.nd.edu.au

Joanna Patching
RN, BA(Psych), MLitt (Psych) PhD
Associate Professor, School of Nursing, The University
of Notre Dame, 160 Oxford Street, Darlinghurst, NSW,
Australia
Joanna.patching@nd.edu.au

Both authors made a substantial contribution to the manuscript. Therese Burke designed the study, performed the
interviews, developed the thematic data analysis and composed the initial manuscript. Joanna Patching supervised
the study data collection and assisted with thematic data analysis, manuscript design and review.

Acknowledgement: Therese Burke was the recipient of support through an Australian Government Research
Training Program Scholarship as a PhD candidate at Notre Dame University, Australia for this research study.

KEY WORDS

Relapsing Remitting Multiple Sclerosis, chronic illness, lived experience, life history, ethnography

ABSTRACT

Objective
The aim of this study was to gain insights into the lived experience of a chronic disease, Relapsing Remitting
Multiple Sclerosis (RRMS). Selecting the most effective methodology to reflect the life span proved challenging.
However, the life history approach proved to be a data‑rich methodology for this study and is explored in detail in this
paper as a qualitative nursing tool.

Setting
This study recruited participants through a state based Multiple Sclerosis organisation in the community.

Subjects
Thirteen participants living with RRMS were purposively recruited, ten female and three male, to discuss their lived
experience. Participants were from diverse backgrounds and were at various stages of disease progression.

Primary argument
Ethnography and life history is an under‑utilised methodology in nursing research. However, the life history
approach was used effectively to collect data to explore the life trajectory of living with a chronic illness. Semi‑
structured interviews and Braun and Clarke’s (2006) method of thematic data analysis ensured a systematic,
robust exploration of the lived experience of RRMS. The study developed eight key themes and over 70 subthemes,
providing clarity into the experience of living with RRMS.

Conclusion
Employing the life history approach to living with RRMS reflected the ebbs and flows of life, themes intertwining and
changing positions of importance according to life events, whether directly or indirectly related to RRMS. Life history
proved to be an effective method to gain a greater understanding of chronic illness and although often overlooked
in nursing research, may represent an excellent methodology choice for nurse researchers working in other areas of
chronic illness.

AUSTRALIAN JOURNAL OF ADVANCED NURSING Volume 36 Issue 4 46

SCHOLARLY PAPER

INTRODUCTION

Multiple Sclerosis (MS) is a progressive inflammatory disease of the central nervous system (CNS) with the
most common form of MS at diagnosis being RRMS, affecting 85% of people living globally with the disease
(Compston and Coles 2008). Recent data from Multiple Sclerosis Research Australia (MSRA) suggests that
there may be 25,600 people living in Australia with MS (MSRA 2018). RRMS is characterised by unpredictable
relapses (exacerbations or attacks), which usually last several weeks before the individual returns to baseline
functioning (Lublin et al 2014). There is currently no curative treatment for RRMS, although recently there
have been major advances in more efficacious treatments called disease modifying therapies (DMTs) to
control relapses and possibly prevent future disability (Stuve and Racke 2016). Aside from a highly variable
disease state and multitude of possible neurological symptoms, MS can also cause numerous secondary
and tertiary effects. Issues may develop in highly personal areas of intimacy and sexuality, mental health,
relationships and employment.

Although there exists an abundance of literature examining many different aspects of MS and MS symptoms,
there is a paucity of literature exploring the whole life experience of living with MS, and more specifically,
RRMS. The aim of this study was to gain insights and understanding into the lived experience of RRMS, so
that nurses may have a deeper understanding of the patient experience and be able to plan and adjust their
nursing care accordingly. To address these specific aims, the study sought to answer the research question
“What is the experience of living with Relapsing Remitting Multiple Sclerosis?”

Exploring the literature for a suitable method for data collection and later data analysis that would span as
much of the life trajectory as possible proved challenging. Using a qualitative approach to understand the
experience of living with RRMS would ensure the participant remained at the centre of the research process,
and their lived experience the focus of the research. However, beyond that, there were very few studies
(especially in recent times), which replicated methods in data collection and analysis in the speciality of MS.
The aim of this paper is to explore life history as an interesting and effective methodology for qualitative nursing
research in chronic illness. Full study results from the research have been published elsewhere (Burke 2019).

The study most alike the current study in terms of participant numbers and focus (Miller 1997) was published
prior to any disease modifying therapies being available and reflected a completely different prognosis than in
modern times. Miller’s (1997) study asked 10 participants living with RRMS “What is it like for you living with
RRMS?”. Hermeneutic phenomenology was used to analyse the transcripts and 12 themes were developed
to describe the experiences of living with RRMS including the importance of social networks, coping with
RRMS, control, uncertainty and conflict. Miller’s (1997) study however, only concentrated on the present time
of living with their illness, not the entire life trajectory, posing questions as to whether previous life events
influenced this chronic illness and vice versa.

Other studies have used various methodologies in phenomenology to explore single cases of women living
with RRMS (Fawcett and Lucas 2006; Finlay 2003), or most recently a study exploring the life world of six
young women living with RRMS (Beshears 2010). However, the focus of the research was centred on the
present time, and no male participants were included in the studies. There was only one narrative found
in the literature review for the current study which explored living with MS using a life history approach (de
Chesnay et al 2008). This short narrative presented an abbreviated story to teach others about overcoming
obstacles in chronic illness (de Chesnay et al 2008).

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DISCUSSION

Choosing a research methodology for the current study
The research question in the current study required a methodology that would gain deep, rich insights and
understanding of the experience of living with RRMS. In seeking to understand and interpret meaning within
context, the study also sought to be inductive (develop findings directly from the study data) and to seek both
patterns and differences in data. The individual voices were important to hear, as well as the group voice of
the entire data set. Finding individual meaning and understanding in stories from patients is fundamental to
the caring and compassionate culture of nursing, and something nurses strive for in daily practice (Munhall
2012). Additionally, nurses are often attracted to qualitative research as they value the richness of deep
understanding and the perspective of the individual living with chronic illness. Finding a data collection method
which considered the people living with RRMS as the experts (Windle 2011) was also important to consider
as a component of the ontology and epistemology beliefs underpinning the current study.

Ethnography methodology
Ethnography is a research methodology which involves the process of learning about people by learning from
them (Roper and Shapira 2000) and has its historical roots embedded in social and cultural anthropology
(Holloway and Todres 2003). The goals of ethnography are to describe, interpret and understand characteristics
of a particular social setting, taking into consideration the diversity and multiplicity of voices from key informants,
the experts who have rich knowledge of the subject under research (Holloway and Todres 2003). Essentially
key informants who represent the culture under study discuss their lives, so that others can better understand
the culture (de Chesnay 2014). Ethnography has a place in health research, particularly with its focus on the
emic, or the patient perspective (Morse 2012), being holistic, contextual and reflexive (Boyle 1994).

Ethnography takes on many forms and has been adapted for use in different settings, depending on the goals
of the research. Early ethnographers spent long amounts of time in the field, known as ‘fieldwork’, getting
to know the study participant/s and encouraging them to share their life stories, often forming personal
relationships in the process (de Chesnay 2014). Often in recent times, economic and time constraints are
considered to inhibit such long encounters between researchers and study participant/s, especially in the
field of nursing. In keeping with the important aspects of traditional ethnography (insights, understanding
and culture), focused ethnography developed, wherein researchers attempt to learn about certain conditions
by asking about the experiences of those living with the condition (de Chesnay 2014; Cruz and Higginbottom
2013).

Life history as a form of focused ethnography
The life history is a “retrospective account by the individual of his or her life in whole or part, in written or
oral form, that has been elicited or prompted by another person” (Watson and Watson‑Franke 1985, pp.2).
This involves a person choosing to tell about the life he or she has lived, told as completely and honestly as
possible (Atkinson 1998). The terms life history and life story are sometimes used interchangeably (Plummer
2001), but there is a subtle difference. Life history is defined as the life account told by a person to the
researcher (de Chesnay 2014) whilst life story is the narrative analysis created of the person’s life from the
life history told to the study researcher (Atkinson 1998). Focused ethnography, in particular life history, has
recently become more popular in health research generally, as it is an effective method to gain information
from a culture that may not necessarily have direct contact with one another (Morse 2012), as is often the
case with people living with a chronic illness.

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Life history in nursing
Life history in general is an underused methodology in nursing, but is perfectly suited to the profession, as
nurses have always valued the stories and insights patients are able to provide to improve understanding of
their world (de Chesnay 2014). Hagemaster (1992) advocated the use of life history in nursing research, and
although still developing, more nurse researchers have used life history over the last two decades to investigate
social, psychological and illness inspired phenomenon. Nursing studies using focused ethnography have been
used to explore illness in homeless youth (Ensign and Bell 2004), investigate health in immigrant adolescents
(Garcia and Saewyc 2007), explore recovery from eating disorders (Patching and Lawler 2009), report the
experiences of community mental health nurses (Spiers and Wood 2010) and to examine the experiences of
a rare chronic health condition, lymphangioleiomyomatosis (Haylen 2015; Haylen and Fisher 2014).

Given its ability to provide a comprehensive holistic examination of the subjective life experience, the life history
approach was chosen as the most appropriate design for the current study, for the purpose of identifying
important themes experienced by individual people living with RRMS, which may also be experienced by their
peers in similar situations (Field and Morse 1985). A great advantage of life history is that it retains the whole
individual story and locates it in a wider social, cultural and historical moment (Plummer 2001). Life history
examines events and how they impact individuals and their life trajectory, revealing turning points, epiphanies
and transformations that may occur over the course of the life living with disease (Haylen and Fisher 2014).
It also provides a way of understanding the meaning of illness and how this meaning might change over time.

Using life history in researching chronic illness reflects the complexity of the human experience it is examining
(de Chesnay 2014), presenting an ideal methodology to gain insights and understanding. Being less time
consuming than traditional ethnography, focused ethnography in the form of life history, is more practical
for most nurse researchers. However, there are challenges inherent in using this methodology, including
deeply personal narratives which may affect the researcher/s emotionally, and the fact that the interviews
and follow‑up can be time consuming and prolonged.

Conceptualising life history in the current study
As suggested by de Chesnay and Fisher (2014), the purpose of the life history is to collect a focused history
around a disease to document the story of each participant, but being careful not to frame this within a broader
ethnography of all people living with a disease. The life history approach in the current study reflected the
cultural and social contexts of each participant, allowing them to approach their life history in any way they
chose, not necessarily in chronological order or centred only on their RRMS diagnosis. Interestingly, many
participants talked of other events in their lives being just as pivotal or more so, than their RRMS illness
diagnosis. Others revealed life events and happenings which later played a significant part in coping with
their chronic illness.

In life history, the researcher and the participant come together as collaborators, composing and constructing
a story (Atkinson, 1998). This was consistent with the ontology and epistemology of the current study with
a strong focus on the emic (patient) perspective. Fostering a good relationship between the researcher and
study participant is important in life history research, as it involves establishing a close relationship between
the two (Plummer 2001). Developing a trusting environment and good rapport early in the process is essential
to a successful study outcome.

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Life history and study methods
Study participants were purposively recruited through a local, state based MS organisation using a flyer to
contact the researcher if people living with RRMS were interested in participating in the study. Fourteen
people expressed interest and requested further information, thirteen people were subsequently enrolled
into the study and interviewed, and one person declined further involvement without giving a reason. Study
recruitment followed the natural preponderance of RRMS, with ten females and three males agreeing to be
interviewed. Participants were asked to choose a pseudonym for the study process to protect their identity and
any potentially identifiable information (about significant others and health care professionals) was removed
from the study transcripts. Approval for the research was obtained from the University of Notre Dame Human
Research Ethics Committee (reference number 016002) with particular attention to participant confidentiality
and managing potential distress to participants recalling past life events.

Semi‑structured interviews have the purpose of obtaining descriptions of the life world of the participant with
respect to interpreting the meaning of the described phenomena (Kvale and Brinkmann 2007), making it
especially suited to life history research. Semi-structured interviews have some pre-defined questions built-in
to the interview, however the researcher is also permitted to probe further and ask additional questions as
the participant responds, often leading to the collection of powerful data in the form of insights, experiences
and perceptions (Peters and Halcomb 2015). Semi‑structured interviews were the chosen data collection
method for the life history approach, performed in person and individually, with just the researcher and study
participant present.

Interviews were performed at a location of the participant’s choosing, and mostly occurred in the home of the
participant and less commonly in a public location such as a park or café. At the commencement of the interview,
participants were provided with a verbal overview of the study, outlining the study aims. Each participant
was then invited to tell their life history, in any order they wished, and covering anything they wished to, with
particular thought to the question “What is the experience of living with RRMS?”. This consistent approach
ensured the information gathered was rich and participant centred. Although predominately unstructured in
nature, the interviews were categorized as semi-structured for two reasons. Firstly, reflection questions were
provided to study participants a week prior to the interview to give some direction to the information that was
sought. Secondly, the RRMS component of the research question gave particular direction about the topic to
be explored as part of the interview.

Reflexivity in the study as a component of ethnography
Reflexivity fits into the wider perspective of ontology and epistemology (Berger 2015) examining the role of
the researcher in the generation and construction of knowledge and assisting the researcher to act without
bias (Holloway and Galvin 2016). Unlike quantitative research where an objective stance is necessary, in
qualitative research the active role of the researcher is valued and appreciated as an important research
tool (Braun and Clarke 2013). However, it is important that the researcher makes visible personal reflexivity
as a form of quality control within the research (Braun and Clarke 2013), where the aim is for “empathic
neutrality” (Ormston et al 2014).

The majority of study participants had been cared for by an MS Nurse as part of their life journey with RRMS,
with the MS Nurse valued by participants for their skills, knowledge and support. Belonging to the ‘MS Nurse
club’ most likely held some definite benefits for the principal researcher in terms of rapport and trust, gaining
instant entry into their life‑world. Participants felt comfortable to discuss any issue they wished disclosing
insights into sensitive issues, such as parenting, sexuality, relationships, hopelessness, mental health,
compromised care and fear. This enabled new understanding into living with RRMS and exposure of concepts

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that have been reported infrequently, or have not been reported at all in the specialty. Additionally, having
an understanding of the symptoms of MS (particularly participant fatigue) helped to manage the interviews
by organising breaks and rest when necessary.

At times, the life history interviews contained highly emotive content and there was difficulty for the principal
researcher to disengage from the data, with vulnerable feelings surfacing as interview transcripts were
re‑listened to and re‑read many times as the thematic analysis progressed. Several of the interviews were
emotionally intense, some participants had suffered neglected childhoods or had been subjected to tragedy,
and others suffered mistreatment by health professionals. Constantly re‑living these discussions to develop
codes and themes often invoked sad and heart‑rending emotions for the researchers. However, an earlier
article by Tanner (2009) exploring experiences listening to sad situations during qualitative doctoral work
proved very helpful in facilitating an effective mental health plan for the study researchers during this process.

Life history and the study findings
As a chronic illness, the life journey of RRMS takes many twists and turns; it is never a linear journey, but
rather one of continual flux, which is mainly due to the innate unpredictability and uncertainty that comes
with the diagnosis of RRMS. This is also the case for many other forms of chronic illness. The great advantage
of using the life history approach is that it reflects the entire life journey; with and without disease. Using
this process uncovered many aspects of each participant’s life, which may have had an impact on their later
journey with RRMS. In particular, many participants described events in childhood, which gave rise to their
later development of resilience, such as childhood neglect, other illness and migration from non‑English
speaking countries. This resilience was then helpful to the study participants in later life, drawing on coping
skills to help them through the difficult and challenging times of RRMS. The process of telling the life history
to the researcher also helped participants to understand themselves in a different way, with many participants
openly recognising their achievements in overcoming difficulty and challenge.

Study themes were developed from the data, with eight key themes telling the story of living with RRMS
as a chronic illness over the life span. Commencing with “Piecing Together the Puzzle” of symptoms at the
beginning of the RRMS journey in the years prior to and during diagnosis, followed by “(Re)defining ME now
that I have RRMS” and coping with the diagnosis, “Battling the Demons” that followed diagnosis, relapses
and symptoms, for some the experiences of “Surplus Suffering” from others, and negotiating “High (In)
visibility” of the symptoms. Eventually study participants were able to gain control by “Taming the Beast”,
learning “The DMT Dance” managing their medications and side effects, and ultimately “Holding Hands with
Hope”, expressing hope and practising purposeful positivity. Although presented theme by theme in a logical
succession, the study findings did not always follow in sequence and definitely did not always “end up” with
hope and positivity. Instead, the eight key themes intermingled with each other to reflect the ebb and flow of
life. They tell the story of possible stops along the life journey of RRMS and the constant moving backwards
and forwards when negotiating and managing living with a chronic illness. Nurses involved in all areas of
nursing care from community, surgical care, other medical specialities, emergency, midwifery and mental
health may encounter patients living with MS and benefit from insights into understanding the journey of
patients to plan care which is patient centred, individualised and holistic. Specific clinical recommendations
have been published elsewhere to comprehensively address specific areas of care (Burke 2019). The nurse
can also experience greater job satisfaction and fulfilment with a deeper understanding and insight into illness.

As noted life history author Plummer (2001, pp.7) reflects, “life is in fluctual praxis, always in flow and ever
messy.” Using ethnographic methodology, and the life history method in particular, to uncover the study themes
worked skilfully with the “messy” life trajectory of RRMS, a chronic but unpredictable disease. Additionally,

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the inclusion of subthemes in the data analysis gave the added ability to “drill down” even further into each
theme, identifying more specific features of a theme under the same central organising concept, but with subtle
differences. This helped to give the study findings more structure and subsequently guided the development
of recommendations for clinical practice (Burke 2019).

CONCLUSION

Using life history methodology to explore the lived experience of a chronic illness gave this study much more
emotion and insight than would have been achieved by simply asking pre‑determined interview questions in a
structured format, or by presenting participants with a survey or questionnaire of topics that the researchers
felt were important. Instead, life histories flowed naturally for the study participants, forming stories and
presenting an abundance and wide range of themes.

Life history gives voice to the ordinary members of a culture as they cope on a daily basis with the joys and
challenges of life (de Chesnay and Fisher 2014), and was embraced by thirteen participants living with RRMS
in the current study. The use of this focused ethnographic methodology worked cleverly with the ebbs and
flows of living with a chronic illness, to reveal many themes and subthemes exploring the lived experience of
RRMS. As RRMS is most commonly diagnosed in young adults, it represents a long period of time to live with
a chronic illness. Using the life history approach generated rich and detailed data about the experiences of
living with RRMS and unearthed some extraordinary insights, which subsequently led to the development
of clinical recommendations for nursing practice. This under‑used ethnographic methodology could be very
useful to consider in other nursing studies researching chronic illness in the future.

REFERENCES
Atkinson, R. 1998. The life story interview. Thousand Oaks, CA: Sage Publications.

Berger, R. 2015. Now I see it, now I don’t: Researcher’s position and reflexivity in qualitative research. Qualitative Research, 15(2):219‑234.

Beshears, B.K. 2010. The experience of young adults living with relapsing-remitting multiple sclerosis. University of Missouri‑Columbia.

Boyle, J.S. 1994. Styles of ethnography. Critical issues in qualitative research methods, 2:159‑185.

Braun, V. and Clarke, V. 2006. Using thematic analysis in psychology. Qualitative research in psychology, 3(2):77‑101.

Braun, V. and Clarke, V. 2013. Successful qualitative research: A practical guide for beginners. London, England: Sage Publications.

Burke, T. 2019. Taming the Beast: Exploring the lived experience of Relapsing Remitting Multiple Sclerosis using a life history approach.
Doctoral study. University of Notre Dame, Australia.

Compston, A. and Coles, A. 2008. Multiple Sclerosis. The Lancet, 372(9648):1502‑1517.

Cruz, E.V. and Higginbottom, G. 2013. The use of focused ethnography in nursing research. Nurse Researcher, 20(4):36.

De Chesnay, M. 2014. Nursing research using life history: Qualitative designs and methods in nursing. New York: Springer Publishing
Company, LLC.

De Chesnay, M. and Fisher, M. 2014. Collecting Life Histories. In De Chesnay, M. (Ed.). Nursing research using life history: Qualitative
designs and methods in nursing. New York: Springer Publishing Company, LLC.

De Chesnay, M; Rassilyer‑Bomers, R; Webb, J. and Peil, R. 2008. Life histories of successful survivors of colostomy surgery, multiple
sclerosis, and bereavement. In: De Chesnay, M. and Anderson, B. A. (Eds.). Caring for the vulnerable: Perspectives in nursing theory,
practice, and research (2nd ed.). Sudbury, MA: Jones And Bartlett Publishers.

Ensign, J. and Bell, M. 2004. Illness experiences of homeless youth. Qualitative Health Research, 14(9):1239‑1254.

Fawcett, T.N. and Lucas, M. 2006. Multiple sclerosis: Living the reality. British Journal of Nursing, 15(1):46‑51.

Field, P. and Morse, J.M. 1985. Nursing research: The application of qualitative approaches. Rockville, MD: Aspen Systems Corp.

Finlay, L. 2003. The intertwining of body, self and world: A phenomenological study of living with recently‑diagnosed multiple sclerosis.
Journal of Phenomenological Psychology, 34(2):157‑178.

Garcia, C.M. and Saewyc, E.M. 2007. Perceptions of mental health among recently immigrated mexican adolescents. Issues in Mental
Health Nursing, 28(1):37‑54.

Hagemaster, J.N. 1992. Life history: a qualitative method of research. Journal of advanced nursing, 17(9):1122‑1128.

AUSTRALIAN JOURNAL OF ADVANCED NURSING Volume 36 Issue 4 52

SCHOLARLY PAPER

Haylen, D.C. 2015. Women’s experiences of living with a rare disease, lymphangioleiomyomatosis (LAM): A life history study. University
of Sydney.

Haylen, D. and Fisher, M. 2014. Using life history to explore the experience of women living with a rare chronic illness:
Lymphangioleiomyomatosis in De Chesnay, M. Nursing research using life history: Qualitative designs and methods in nursing. New
York: Springer Publishing Company, LLC.

Holloway, I. and Todres, L. 2003. The status of method: flexibility, consistency and coherence. Qualitative research, 3(3):345‑357.

Holloway, I. and Galvin, K. 2016. Qualitative research in nursing and healthcare (4th ed.). Chichester, West Sussex, UK; Ames, Iowa:
John Wiley & Sons Inc.

Kvale, S. and Brinkmann, S. 2007. Introduction to interview research. Doing interviews, 2‑11.

Lublin, F.D., Reingold, S.C., Cohen, J.A., Cutter, G.R., Sørensen, P.S., Thompson, A. J., . . . Polman, C.H. 2014. Defining the clinical course
of multiple sclerosis: The 2013 revisions. Neurology, 83(3):278.

Miller, C.M. 1997. The lived experience of relapsing multiple sclerosis: A phenomenological study. The Journal of Neuroscience Nursing:
Journal of the American Association of Neuroscience Nurses, 29(5):294.

Morse, J.M. 2012. Qualitative health research: Creating a new discipline. Walnut Creek, CA: Left Coast Press.

Multiple Sclerosis Research Australia (MSRA). 2018. MS is on the rise but still flying under our radar. Retrieved from https://msra.org.
au/news/ms-rise-australia- still-flying-radar/ (accessed 16.06.18).

Munhall, P.L. 2012. Nursing research: A qualitative perspective (5th ed.). Sudbury, MA: Jones & Bartlett Learning.

Ormston, R., Spencer, L., Barnard, M. and Snape, D. 2014. The foundations of qualitative research. Qualitative research practice: A
guide for social science students and researchers, 1‑26.

Patching, J. and Lawler, J. 2009. Understanding women’s experiences of developing an eating disorder and recovering: A life‑history
approach. Nursing Inquiry, 16(1):10‑21.

Peters, K. and Halcomb, E. 2015. Interviews in qualitative research: A consideration of two very different issues in the use of interviews
to collect research data. Nurse Researcher, 22(4):6‑7.

Plummer, K. 2001. Documents of life 2: An invitation to a critical humanism. Thousand Oaks, CA: Sage Publications.

Roper, J.M. and Shapira, J. 2000. Ethnography in nursing research: Methods in nursing research 1.Thousand Oaks, CA: Sage Publications.

Spiers, J.A. and Wood, A. 2010. Building a therapeutic alliance in brief therapy: The experience of community mental health nurses.
Archives of Psychiatric Nursing, 24(6):373‑386.

Stüve O. and Racke. M.K. 2016. Will Biomarkers Determine What Is Next in Multiple Sclerosis? Biomarkers in Multiple Sclerosis. JAMA
Neurology 73(5):496–497.

Tanner, K. 2009. “I’m crying too… help, what do I do?”–Unexpected encounters experienced by a first time researcher. Current Narratives,
1(1):69‑79.

Watson, L.C. and