INTENS CRIT CARE NUR 78 (2023) 103478

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Intensive & Critical Care Nursing

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Research Article

Shifting focus: A grounded theory of how family members to critically ill

patients manage their situation
Gisela Vogel a, *, Eva Joelsson-Alm a, Ulla Forinder b, Christer Svensen a, Anna Sandgren c
a
Department of Clinical Science and Education, Karolinska Institutet, Unit of Anaesthesiology and Intensive Care, Södersjukhuset, Sjukhusbacken 10, SE-118 83
Stockholm, Sweden
b
Faculty of Health and Occupational Studies, University of Gävle, Kungsbäcksvägen 47, SE-801 76 Gävle, Sweden
c
Center for Collaborative Palliative Care, Department of Health and Caring Sciences, Linnaeus University, Universitetsplatsen 1, SE-352 52 Växjö, Sweden

A R T I C L E I N F O A B S T R A C T

Keywords: Objectives: Critical illness is a life-threatening condition for the patient, which affects their family members as a
Critical care traumatic experience. Well-known long-term consequences include impact on mental health and health-related
Critical care nursing quality of life. This study aims to develop a grounded theory to explain pattern of behaviours in family members
Families
of critically ill patients cared for in an intensive care unit, addressing the period from when the patient becomes
Grounded theory
Intensive care units
critically ill until recovery at home.
Patient- and family centred care Research methodology/design: We used a classic grounded theory to explore the main concern for family members
of intensive care patients. Fourteen interviews and seven observations with a total of 21 participants were
analysed. Data were collected from February 2019 to June 2021.
Setting: Three general intensive care units in Sweden, consisting of a university hospital and two county hospitals.
Findings: The theory Shifting focus explains how family members’ main concern, living on hold, is managed. This
theory involves different strategies: decoding, sheltering and emotional processing. The theory has three
different outcomes: adjusting focus, emotional resigning or remaining in focus.
Conclusion: Family members could stand in the shadow of the patients’ critical illness and needs. This emotional
adversity is processed through shifting focus from one’s own needs and well-being to the patient’s survival, needs
and well-being. This theory can raise awareness of how family members of critically ill patients manage the
process from critical illness until return to everyday life at home. Future research focusing on family members’
need for support and information, to reduce stress in everyday life, is needed.
Implications for Clinical Practice: Healthcare professionals should support family members in shifting focus by
interaction, clear and honest communication, and through mediating hope.

Introduction Another barrier is to not understand or be involved in healthcare pro­

Family members of critically ill patients are exposed to an unex­
pected and traumatic experience when the patient becomes critically ill
(Marshall et al., 2017, Wong et al., 2019a). This experience could be
associated with sadness, anger, fear (Harlan et al., 2020), stress and
anxiety (McAdam et al., 2010, Vandall-Walker and Clark, 2011), and
may cause loss of control (Ågård and Harder, 2007, Wong et al., 2017).
There are several barriers to regaining control such as uncertainty and
vulnerability which can be influenced by family members’ emotional
state or the environment (Rückholdt et al., 2019, Wong et al., 2017)
fessionals’ communication (Jennerich et al., 2020, Wong et al., 2017).
Critically ill patients can rarely participate in decisions about their care;
therefore, decisions must often be made by their family members
(Iverson et al., 2014, Stricker et al., 2009).
Anxiety, stress, depression and post-traumatic stress syndrome
(PTSD) are common among family members of critically ill patients and
known as post-intensive care syndrome - family (PICS-F) (Davidson
et al., 2012, Needham et al., 2012, van den Born-van Zanten et al.,
2016).
Given this perspective, we summarised patients’ critical illness as an

* Corresponding author at: Department of Clinical Science and Education, Karolinska Institutet, and Unit of Anaesthesiology and Intensive Care, Södersjukhuset,
SE-118 83 Stockholm, Sweden.
E-mail addresses: gisela.vogel@ki.se (G. Vogel), eva.joelsson-alm@ki.se (E. Joelsson-Alm), ulla.forinder@hig.se (U. Forinder), christer.svensen@ki.se
(C. Svensen), anna.sandgren@lnu.se (A. Sandgren).

https://doi.org/10.1016/j.iccn.2023.103478
Received 28 October 2022; Received in revised form 5 June 2023; Accepted 7 June 2023
Available online 27 June 2023
0964-3397/© 2023 The Author(s). Published by Elsevier Ltd. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).
G. Vogel et al. Intensive & Critical Care Nursing 78 (2023) 103478

emotional and stressful experience for family members, with long-term
consequences on their health. However, there is still a need for more
research on how family members manage their situation during the
whole process, from the patient’s ICU-stay until recovery home.
Therefore, our aim with this study was to develop a grounded theory to
explain patterns of behaviours in family members of critically ill patients
cared for in intensive care unit (ICU), addressing the period from when
the patient becomes critically ill until recovery at home.
Method
Design
In this study, classic grounded theory (CGT) was used (Glaser et al.,
1967, Glaser, 1978, 1998). There exist other versions of Grounded
Theory methodologies, for example Straussian Grounded Theory
(Strauss and Corbin, 2015) and Constructivist Grounded Theory (Char­
maz, 2014), but we choose to fully follow CGT as Glaser explains it. CGT
aims to explore and conceptualise patterns of human behaviours (Glaser
et al., 1967, Holton and Walsh, 2016). Classic grounded theory is
considered a general methodology (Holton, 2008). CGT can be seen as
‘highly consistent with Charles Sanders Pierce’s philosophy of pragma­
tism, his epistemological and ontological assumptions’ (Nathaniel,
2011, p.198). The authors’ epistemological stance is aligned with Peirce
(the Peirce Edition Project et al., 1998). The research process in CGT is
open, with focus on a research area of interest but without specific
preconceived or predetermined research questions. Participants’ main
concern is explained by categorising human behaviours into concepts,
whose relations to each other are explained theoretically (Glaser, 1978).
The theory is abstract of time, place and people and a conceptual
probability statement that explains the behaviours that account for
resolving of a main concern (Glaser, 1998, Simmons, 2022). The method
CGT aligns with the current study as it aims to discovering participants’
main concern and processing of this main concern in a substantive
theory. The guidelines for reporting and evaluating grounded theory
research studies (GUREGT) have been followed (Bottcher Berthelsen
et al., 2018), see Supplementary file 1.
Setting
after the relative was discharged from intensive care.
Observations were carried out in parallel with the data collection of
the interviews to gain a further understanding of family members’
patterns of behaviour in the ICU and later on used to saturate the con­
cepts in the emerging theory. The nurses in charge asked for consent to
participate before the observations took place. The family members who
had been observed were not eligible for an interview due to ethical
reasons. First, we did not want to cause increased burden on the par­
ticipants with two different data collection occasions, first being
observed and then interviewed a few months later. Second, the ethics
permit did not allow the collection of personal data about the patient.
We were therefore unable to connect the observations with a patient at
the follow-up clinic, where the selection of participants was made.
Data collection
A total of fourteen formal interviews and seven observations were
conducted (Table 1). The location for the individual interview, chosen
by the participants, was either in the participants’ home or in a room at
the hospital. The participants were informed that the interviewer was an
intensive care nurse, working in another ICU, and that she had not been
involved in the patients care.
The first author conducted all the interviews which all started with
one open-ended question: ‘Share your story about when your family
member became critically ill until now’. The analyses began directly
after the first interview. Ideas that emerged during the analyses
prompted further questions such as ‘Other participants talked about
difficulties when the patient returns home, what is your opinion of that?’
The analysis also guided further choice of participants with different
properties. Each interview lasted about 30 min to 1.5 h. The interviews
were audio-recorded and transcribed verbatim. In addition, field notes
were written during the interviews to help retain details of the inter­
action, the physical environment and non-verbal behaviours (Glaser,
1978).
Observations of participants were performed after the first eight in­
terviews. The observations took place bedside in the patient’s ICU-room,
and the participants were informed that the observer was an intensive
care nurse working in another ICU. During the observation, field notes
were taken about family members’ behaviours and social interaction

Data were collected from February 2019 to June 2021. The study
Table 1
took place in two general ICUs and one medical ICU in different areas of
Participants’ background information.
Sweden which represent both urban and rural areas. The hospitals
Patient Age Sex Interview (I)/ Relationship Days Time from
comprised a university hospital and two county hospitals with 6–14 ICU-
Observation to patient* in ICU
beds and a nurse – patient ratio of 1:2, often with help from an assistant (O) ICU discharge
nurse. None of the ICUs normally had visiting restrictions, but for family /months
members to patients treated during the COVID-19 pandemic, there were
1 71 F I Wife 18 4
restrictions in form of reduced visiting hours. 2 72 F I Sister 7 7
3 45 F I Wife 16 3
Participants 4 49 F I Sister 40 6
5 55 F I Wife 8 7
6 79 M I Husband 21 10
In the current study the term ‘family member’ is defined as an adult 7 39 F I Wife 21 6
person (≥18 years) living in a relationship with the patient and/or is a 8 71 F I Wife 60 10
sibling/child to the patient. 9 57 M I Brother 11 7
Inclusion criteria were family members of patients who were cared 10 51 F I Mother 9 12
11 66 M I Husband 30 8
for in one of the included ICUs, over 18 years of age, and able to un­ 12 48 F I Daughter 28 11
derstand Swedish language. The participants were either interviewed 13 62 M I Son 21 12
after the patients’ discharge from hospital or observed during the pa­ 14 26 M I Son 60 11
tients’ ICU stay. 15 43 M O Son ** –
16 60 F O Wife **
Recruitment for the interviews took place in collaboration with the –
17 54 F O Wife ** –
local ICU’s follow-up clinic. The nurses at the follow-up clinic were 18 41 F O Wife ** –
invited to choose eligible family members. The first author contacted the 19 78 M O Father ** –
family member and gave information about the study. If they were 20 34 M O Son ** –
interested in participation, written information was sent together with 21 73 F O Wife ** –

the consent, and an appointment was scheduled. The family members *Participants’ living together with the patient is named wife/husband.
were interviewed on one occasion between three until twelve months ** Not available information due to the patients’ integrity.

2
G. Vogel et al.
with the patient, other family members and healthcare professionals.
Each observation lasted between 1 and 3 h.
Finally, data were collected with six additional interviews using
theoretical sampling to saturate concepts (Glaser, 1978, Holton and
Walsh, 2016). This means that ideas that had emerged during the
analysis became ideas for further questions and variation in choice of
participants, e.g different age, gender, family bound, time from the
patients ICU-discharge, different period of care in the ICU and ICU-care
in different hospitals.
Data analysis
The analysis was carried out in three phases according to classic
grounded theory (Glaser, 1978, Glaser, 1998, Simmons, 2022). Data
collection and analysis were a simultaneous process which began with
open coding immediately after the first interview. Through line-by-line
coding and constant comparison of interviews and observations, pat­
terns of behaviours were identified and coded. Memos, which theorised
write-up ideas about the codes and their relationships (Glaser, 1978),
were written, leading to abstraction and ideas about further data
collection. Open codes were compared with each other and then
compared with newly generated codes into concepts. Then these con­
cepts were compared to each other and newly generated concepts, and
eventually one concept emerged as more outstanding and was identified
as a possible core category. The second phase (selective coding) then
started with coding data in relation to the core category to saturate the
core. This means that new data was collected, but also that earlier
collected data was analysed once again with focus on the core category
and the concepts related to the core. The core category’Shifting focus’ is
the concept to which all other concepts relate and explains how par­
ticipants resolve their main concern ‘Living on hold’. We focused on
finding the core category that explains and covers how the main concern
is resolved with as much variation as possible. When no more variation
or new concepts could be identified, saturation was reached and the
third phase, theoretical coding, began. As concepts and processes
emerged, tentative hypotheses were proposed, i.e., abduction. Abduc­
tion is fundamental since related hypotheses are joined together to
shape theories (Nathaniel, 2011). Theoretical coding aims to increase
the level of abstraction and conceptualize how substantive codes may
relate to each other as hypotheses to be integrated in the theory (Glaser,
1998). This was achieved by sorting memos and writing memos on
memos. Conceptual memos were written and sorted to identify re­
lationships between events in concepts and between concepts and the
core category. The theoretical codes in this study emerged as a psycho-
social process which includes three strategies as well as three different
outcomes. A literature review was conducted after the emergence of the
theory (Glaser, 1978). This literature review was used as a supplemen­
tary data source, integrated into the constant comparative process to
saturate the meaning of the concepts and to generate theory.
The first and last author, who is experienced in the method of classic
grounded theory, analysed the data. During this process, they discussed
the analyses and the developed codes and concepts together with author
(EJA), a senior researcher and intensive care nurse. All authors took part
in the process of discussing and clarifying the developed concepts and
theory.
Ethical approval
Ethical approval was obtained from the Regional Ethical Review
Board in Stockholm (No 2013/2233–31/1, 2020–03760 and
2020–04907). All participants received both oral and written informa­
tion about the study before giving written consent. They were also
informed about the voluntary nature of participation in the study and
their right to withdraw at any time. The written information included
information about potential risks of participating in the study and
offered support from the ICU follow-up clinic or counsellor if needed.
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Intensive & Critical Care Nursing 78 (2023) 103478
The participants who were observed during the patients’ ICU-stay were
in a vulnerable situation; therefore, the nurse in charge assessed if they
were able to participate in observations before the researcher asked and
informed about the study. Strict confidentially was maintained
regarding the participants.
Findings
The substantive theory Shifting focus emerged as pattern of behav­
iours through which the family members of critically ill patients dealt
with their main concern of living on hold. Fig. 1 shows an overview of
the theory. The family members felt that their lives had been put on hold
and that they were losing control over the situation and could not in­
fluence the course of events or the patient’s outcome. The situation can
be experienced as stressful and energy consuming, which can cause
emotional strain and feelings of abandonment, vulnerability, frustra­
tion, anxiety, and fear.
Shifting focus emerged as the core category. It means that family
members shift focus from themselves to the critically ill patient. They
must set aside (move beyond) themselves and their own needs to focus
on the patient’s needs, well-being and survival, which is most important
in their lives at that time. This shift in focus is necessary to manage the
uncertainty and helplessness which are caused by their lives being put
on hold, and necessary to survive emotionally.
The theory Shifting focus is a process that first involves the strategies:
Decoding, which means figuring out the situation; Sheltering, which
means taking responsibility for the patient’s needs and care; and
Emotional processing, which means managing the strenuous emotional
experiences. All these strategies are interrelated, and there are no
evident boundaries between them. The degree of emotional strain has an
impact on which of the three strategies are used as outcomes of the
theory: Adjusting focus means achieving a balance between the in­
dividuals in the family that promotes everyone’s well-being; Emotional
resigning means giving up and focusing on one’s own needs and
sometimes leaving the other person behind emotionally; and Remain­
ing in focus means focusing on the other persons’ needs while dis­
regarding one’s own needs.
Some strategies are more commonly used during the patients’ hos­
pitalisation period, while others are more used during the patients’ re­
covery. There are also different factors which influence the use of
strategies and when they are used. Individual factors such as personality,
higher age and gender, and external factors such as the patient’s degree
of illness, the personal meaning of the event, consequences for everyday
life, previous experiences of serious incidents and trauma, problems
within the family, and family construct can affect the use of different
strategies and outcomes.
Decoding
This means trying to understand what has happened, why it has
happened and prepare for what is going to happen. It is also a way of
figuring out the outcome of the illness and predicting the consequences
of the situation, and being prepared for what to expect now and in the
future. Decoding helps to reduce the uncertainty of the situation and
increases the feeling of control. Although it is used during the patient’s
whole disease trajectory, it is more often used when the patient is
hospitalised.
In addition, decoding can be done through observing the health
professionals’ behaviour and through seeking information by asking
questions. Sometimes the same questions are posed to different persons,
and then comparing the given information to figure out if the infor­
mation is consistent and trustworthy. Decoding can also be done
through comparing one’s experiences with others in the same situa­
tion or by reading literature or searching on the Internet.
During decoding, conclusions are drawn about the meaning of the
illness and events linked to the illness. If something about the situation is
G. Vogel et al.
Fig. 1. An overview of the theory Shifting focus, that first involves the strategies Decoding, Sheltering and Emotional processing. The theory has three different
outcomes: Adjusting focus, Emotional resigning and Remaining in focus.
elusive or incomprehensible and difficult to decode, drawing one’s
own conclusions can be used. This could be a source of mis­
understandings and an obstacle in processing the situation. Drawing
one’s own conclusions could, on the other hand, be a way to convert the
incomprehensible to something understandable and manageable, even
though the conclusions are not based on the truth. Regardless of its truth
content, drawing one’s own conclusions may facilitate the ability to put
strenuous events behind to make it easier to move on in life.
Depending on the positive or negative information given about the
severity of the patients’ condition, decoding could result in reduced
uncertainty, but it may also result in reduced hope. How the information
is given, such as sensitive or insensitive, clearly, or indistinctly, can also
have an impact on decoding. Clear and honest information facilitates
decoding. However, given that the patient’s condition could change
rapidly, the ambiguous information can be very confusing. At the same
time, information which is experienced as negative, as well as indistinct
behaviours, can be strenuous and confusing and therefore difficult to
decode. This may lead to ruminating about what has happened or what
is going to happen.
Sheltering
This means taking responsibility for the patient’s needs, care, well-
being and recovery and is considered as an expression of love and care
for the patient. This strategy is used during the whole process, but the
intensity of using it depends on degree of control over the situation.
Sheltering can be triggered by ambiguous information that is provided
or inconsistent behaviour from healthcare professionals. It can also be
triggered by changes in the patient’s situation such as rapid deteriora­
tion. These triggers can result in feelings of abandonment and anger,
thus questioning the care. For example, this is common and occurs when
transitioning from one care level to another, which means different or­
ganisations and division of responsibilities. Sheltering involves Pro­
tecting, Getting involved and Encouraging the patient.
Protecting means to take responsibility for the patient’s security,
rights, and well-being to protect him/her from harm. This is done
through advocating for and claiming the patients’ rights by monitoring
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Intensive & Critical Care Nursing 78 (2023) 103478
and evaluating actions performed by “key persons” in the environment
(e.g. healthcare, rehabilitation, workplace, neighbours). When protect­
ing the patients, it suppresses one’s own anxiety and increases a feeling
of control over the situation.
However, the desires for protecting may result in overprotecting
when experiencing lack of trust in the environment or the patient’s ca­
pacity to manage difficulties. Overprotecting is a way to deal with
thoughts and worries about what might happen, to maintain control.
Getting involved is a way to shelter, in order to make sure that the
patient is provided with the best possible conditions for good treatment
and care. It is common to act like a coordinator or “a spider in the web”,
which means acting as a well-informed organiser of the activities during
care and recovery. By participating in care and support in rehabilitation
as well as learning about the patients’ condition, and participating in
decisions regarding treatment, they can act as advocates for the patient.
By being close to the patient, with possibility of physical touch, it de­
creases their anxiety. Getting involved facilitates the decoding of the
situation and diminishes their feelings of being put on hold, where they
have full focus on the patient.
Encouraging the patient is used to motivate and transfer strength to
the patient to overcome abandonment, adversities and to survive. The
strategy is used during the whole process, but to a higher degree during
the ‘hospitalisation’ period. Positive suggestions to convey the value of
the person, his or her strengths, and the positive aspects in life that are
worth fighting for are transferred even if the patient is unconscious.
Positive thought transfer can be used when the patient is unconscious.
This can be done by writing to the patient in his or her diary or sending a
text message to their telephone even if the patient cannot read the
messages. However, encouraging the patient is rarely used when they
feel a lack of hope for a good outcome for the patient.
Emotional processing
Emotional processing is ongoing through the whole process and
implies to reduce emotional strain caused by helplessness and uncer­
tainty. Emotional processing involves Maintaining hope, Sharing bur­
dens and Reflecting. These strategies are used to make it easier to
G. Vogel et al.
understand and manage strenuous emotional experiences and they
allow for emotional relief. However, there could be obstacles for this
emotional relief caused by lack of hope and social support, which leads
to ruminating and emotional resigning.
Maintaining hope is fundamental for emotional processing and
creates prerequisites for managing emotional strains caused by the pa­
tients’ illness. This could be done both in an active and a passive way.
Paying attention to signs of improvement in the patients’ health or
progresses in recovery encourage hope. Positive thinking about the
outcomes for the patient such as “this should run well” or “this is better
than the worst (death)” are ways to encourage hope. Requesting and
receiving positive information from healthcare professionals and their
promises to not give up as well as their professional behaviours increase
hope and facilitate the maintenance of hope. If it is difficult to maintain
hope or if their hopes are dashed, this may lead to increased risk of
ruminating. It can also lead to feelings of blame and guilt which may
lead to giving up and resigning.
Sharing burdens is a way to manage emotional strain and is done
through sharing experiences and responsibility. Having trust and being
confirmed are perquisites for sharing burdens with someone and is often
a two-way communication. Sharing burdens is done with persons who
are confirmatory and understand the emotional strain. These persons
can actively listen without value judgements, often with the same ex­
periences or knowledge about similar situations, and these persons often
inspire trust. Family members in the same situation with the same ex­
periences who understand the meaning of events and experiences fa­
cilitates the sharing of burdens and responsibility for the patient.
Experiences of the same event could however differ even within the
same family. If this occurs, the person could choose to only convey
confidence in what both share commonly. Sharing burdens could have
the effect of both separating and strengthening family bonds.
Reflecting is fundamental in shifting focus and a strategy used to
emotionally process events, emotional strain, feelings of one’s own guilt
and others’ guilt due to events, changes, and consequences of the situ­
ation. It is a way to understand the meaning of events, which facilitates
one’s ability to leave them behind. Critical review of, and reflection of
details and course of events, is done by communicating with others,
reading the diaries written by healthcare professionals regarding the
patient, writing own notes or diaries, or processing in mind. The in­
tensity of reflecting could differ among individuals, as some feel a need
to reflect more than others. When feelings and thoughts are over­
whelming, it can help also to disperse one’s thoughts. This is a way to
take a brief respite from your thoughts and feelings and to gather
strength. Physical activities, engaging in hobbies, meeting friends but
also going back to work help to disperse thoughts.
If emotional processing fails in any way, it could result in feelings of
loneliness, exhaustion, fatigue, and insecurity and the risk of getting
caught up in ruminating, with feelings of blame and guilt or, on the
other hand, the risk of suppressing the emotions.
There are several conditions which have an impact on the risk for
ruminating. Dissatisfaction with treatment and care, mis­
understandings, bad conscience, and anger towards the patients’ be­
haviours are risk factors for being caught in ruminating which hinders
the emotional processing. Suppressing emotions could occur when
emotions and thoughts are being held back and are too difficult to
handle. This is done by suppressing negative thoughts about the pa­
tients’ behaviours or own restriction. For example, ‘He has caused his
own illness, but doesn’t want to change behaviours despite that’ or ‘I
don’t want this person to leave the hospital and come home; I can’t
handle that’. Those feelings could result in emotions such as feeling guilt
and anger and be transferred into despair, which has a negative impact
on one’s well-being and the relationship.
There are several factors that have an impact on the outcomes, such
as misunderstandings, unpleasant and careless behaviours by healthcare
professionals and/or other persons, adverse events in care, and weak
family relationships, which can result in blaming others or oneself and
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Intensive & Critical Care Nursing 78 (2023) 103478
result in prolonged ruminating. Ability to maintain hope, sharing bur­
dens and reflecting help to adapt to new conditions and are triggers to
emotional survival and balance in life. Adjusting focus is precondition
for adapting to new conditions which provides space for everyone’s
needs. There are three possible outcomes of the theory: Adjusting focus,
Emotional resigning and Remaining in focus.
Adjusting focus
Adjusting focus means adapting to alterations in life with the aim to
receive a more emotionally and practically balanced family structure for
everyone’s needs and well-being. This includes space for each in­
dividual’s needs and stability in everyday life routines. This could imply
changes in division of responsibilities within the family and changed
routines but also to strengthen mutual interests and previous strengths
of family ties, as common interests, humour, etc. Adjusting focus occurs
by Focusing on oneself, Setting boundaries and Diminishing. The in­
tensity of using strategies could be influenced by personality, develop­
ment of the patients’ illness, its consequences and impact in everyday
life. This strategy is more often used after the patients’ discharge from
hospital.
Focusing on oneself implies an increased awareness of one’s own
needs and to disperse thoughts. This can occur when taking a breathing
space in life by shifting focus from the patient’s needs to own needs and
own activities. It is a way to gather thoughts and regain energy. Physical
activities, engaging in hobbies, meeting own friends but also going back
to work can increase their well-being. Focusing on oneself facilitates
reduced use of sheltering, which means possibility to set aside one’s
responsibility and problems to be able to replenish energy, which is
fundamental for a healthy balance in life. Emotional exhaustion and/or
unexpected deterioration in the patient’s health could trigger shifting
focus back to the patient.
Setting boundaries for how much support the patient may require
from one to manage his/her everyday life could be doubtful and twofold.
On the one hand, the patient needs support, but the support needed
could be strenuous and affect one’s own health negatively and cause
emotional and physical fatigue. Through seeking guidance from others
and sometimes losing one’s temper when demands become over­
whelming could increase awareness of relevant expectations on oneself
and the other person. Setting boundaries could also occur with persons
who consume energy without giving anything back by terminating the
relationship temporarily or permanently.
Diminishing is a way to distance oneself from all the experienced
burdens and problems caused by the illness which has been in focus
around the clock. It does not mean to forget or push away what has
happened, but to be clear with: ‘that this is what it is, and nothing could
be changed in the course of events, and I have to relate to it’. Dimin­
ishing takes time; it also commutes back and forth between hope and
despair which can be influenced by progress or setbacks in the patient’s
and one’s own situation. Some days are better emotionally and some
worse. Planning for future is a way to provide space for new and
positive experiences together. To plan a travel together, mutual activ­
ities or to fulfil previous or new dreams could symbolise a restart to
something new and good.
Emotional resigning is an outcome of giving up hope about changes
in the patient’s negative behaviours or ability to improve. It means to
leave the other person emotionally behind to focus on one’s own needs.
This does not always mean to leave the patient physically, but it has to
do with the negative impact within the relationship. A non-functioning
relationship before critical illness, lack of hope in the patient’s
improvement, not using or reduced use of sharing burdens, to ruminate
or suppress feelings, affect this outcome.
Remaining in focus implies focus on the other person’s needs by
disregarding your own needs which could result in abandonment, and
emotional and physical fatigue. Decoding and sheltering are used to a
higher degree and emotional processing to a lower degree, but strategies
G. Vogel et al.
in adjusting focus are not used in this outcome.
Discussion
In this classic grounded theory, Shifting focus emerged as pattern of
behaviours through which family members of critically ill patients
resolve their main concern, Living on hold. This provides insight into a
process that involves different strategies: decoding, sheltering and
emotional processing. The theory has three different outcomes: adjust­
ing focus, emotional resigning or remaining in focus. There are several
factors which can affect the process as well as the outcome such as
misunderstandings, unpleasant and careless behaviours from healthcare
professionals and/or other persons, adverse events in care and weak
family relationships. A patient’s sudden, unpredictable, illness turns
family members’ lives upside down and implies putting your own self in
the background and focusing on the patient’s survival, needs and well-
being. This emotional adversity has been described in other studies of
family members of ICU-patients as uncertainty (Iverson et al., 2014,
Page et al., 2019, Vandall-Walker and Clark, 2011, Wong et al., 2017,
Wong et al., 2019b). Shifting focus is an energy-consuming condition
with emotional adversities, which takes time and energy to process.
Long-term consequences for family members and effects on their mental
health and well-being are well described in previous research (Białek
and Sadowski, 2021, Needham et al., 2012, Petrinec and Martin, 2018,
Serrano et al., 2019, van den Born-van Zanten et al., 2016).
Decoding enables awareness, which increases a sense of control.
Interaction with healthcare professional and clear communication fa­
cilitates decoding, having a positive impact on emotional processing and
outcome in the process. This is in accordance with findings in other
studies of family members to ICU-patients (Kynoch et al., 2016, Reeves
et al., 2015, Wong et al., 2015).
Sheltering is used as a form of protection and support for the pa­
tient’s security and well-being. This is a part of the process which fa­
cilitates control, but overprotecting increases the risk for remaining
focused on the patient’s needs. This concept was explored with a similar
meaning in a study of family members of patients who received a
pacemaker (Malm and Hallberg, 2006).
We found that maintaining hope, sharing burdens and reflecting
(emotional processing) were preconditions for a balanced focus on the
patient and needs within the family, to achieve a balanced family
structure in everyday life. This strategy could be compared with
regaining control that is promoted by finding a meaning, which has been
explored in a study on family members of ICU-patients by Wong et al.
(2019b). According to previous research, this is a strategy used to in­
crease control in disease processes (Brolin et al., 2016, Hughes et al.,
2018, Vogel et al., 2021). Hope is a perquisite for not giving up or
emotionally resigning. Corn et al. (2020) explored hope as a human
phenomenon and multidimensional concept depending on the setting,
which also have been shown to enable health and well-being (Cutcliffe
and Herth, 2002, Fitzgerald Miller, 2007). Bialek and Sandowski (2021)
found that having a low level of hope in family members of ICU-patients
is connected with stress, anxiety and depression during the hospital­
isation period. In this study, maintaining hope includes hope for the
patient’s survival, progress, and a life worth living. Bygstad-Landro and
Giske (2018) underline that hope enables moving forward through
emotional adversities during a depression. However, we also found that
reduced hope has an impact on the progress in shifting focus.
Sharing burdens was used to share experiences, seeking, and getting
support from others and reducing emotional strain. Wong et al. (2019a)
reported that social support from family members makes it easier to
regain control during the ICU-stay. This is consistent with our findings
but beyond that, confidence, coherence and trust are attributes that
facilitate this strategy and could also be delivered from persons outside
the family.
Reflecting raises awareness on the meaning of events and is a way to
make sense of what happened and why, which facilitates a balanced
6
Intensive & Critical Care Nursing 78 (2023) 103478
focus. This strategy is comparable with the strategy sense-making which
is identified in previous studies in the context of critical illness (Page
et al., 2019, Vogel et al., 2021, Wong et al., 2019b).
The theory has different outcomes. The impact of the patient’s illness
in family members’ everyday life may depend on severity of illness and
its meaning for those involved. Not everyone is able to dare to let go of
focus on the patient’s needs and well-being and remains in sheltering the
patient, with fatigue and mental consequences as outcomes. Remaining
in focus is not explored in the same way in previous research on family
members of ICU-patients. Patients and family members use different
strategies to manage the process from critical illness to life at home,
which can affect the understanding of each other’s needs (Page et al.,
2019, Vogel et al., 2021). Lack of understanding of each other could
result in resigning, which means to leave the other person emotionally
behind. This could be a result of a weak family construct and loss of hope
in the patient’s improvement, but information from professionals about
the realistic expectations of the patient and oneself can promote a better
outcome. This has been confirmed in a study of family members of ICU-
patients by Wong et al. (2017).
Limitations
This theory explains patterns of behaviours in a substantive research
area. The theory can be tested if new data emerges and then be modified.
Cultural differences or other contexts may influence differences in the
process. A grounded theory is abstract of time, place, and people (Glaser,
1978). Therefore, the theory Shifting focus may be of relevance in other
substantive areas after modification with new data to optimize the fit of
the theory.
We have fully followed CGT as Glaser describes it (Glaser, 1978) and
in line with the journal’s guidelines for authors and the GUREGT
guidelines we present the Findings and Discussion sections separately.
This could be considered a limitation as it might not demonstrate
abduction in theorizing. However, we believe that this way to explain
our theory makes it easier for the reader to understand the theory.
A further limitation is that we did not interview the persons that were
observed. Seeing the trajectory for specific families could have added
strength to the study.
Conclusion
Critical illness and treatment in an intensive care unit is a traumatic
event for patients and their family members. This emotional adversity is
handled by the family members through a process of shifting focus from
own needs and well-being to the patients’ survival, needs and well-
being. Maintaining hope, ability to social support and reflecting both
facilitates this process of shifting focus and affects the outcomes.
Healthcare professionals should support family members in shifting
focus by interaction, clear and honest communication, and through
mediating hope. Future research focusing on family members’ need for
support and information to reduce stress in everyday life is needed.
Declaration of Competing Interest
The authors declare that they have no known competing financial
interests or personal relationships that could have appeared to influence
the work reported in this paper.
Acknowledgements
The authors would like to thank all participating family members
and ICU- follow-up clinics.
Funding source
This research did not receive any specific grant from funding
G. Vogel et al.
agencies in the public, commercial, or not-for-profit sectors.
Appendix A. Supplementary data
Supplementary data to this article can be found online at https://doi.
org/10.1016/j.iccn.2023.103478.
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