Intensive and Critical Care Nursing (2016) 32, 3341

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ORIGINAL ARTICLE

Childrens thoughts and feelings related to

visiting critically ill relatives in an adult
ICU: A qualitative study
Susanne Knutsson a,, Ingegerd Bergbom b,1

a
Department of Nursing, School of Health Sciences, Jnkping University, PO Box 1026,
SE-551 11 Jnkping, Sweden
b
Institute of Health and Caring Sciences, Sahlgrenska Academy, University of Gothenburg, Box 457,
SE-405 30 Gteborg, Sweden

Accepted 31 July 2015

KEYWORDS Summary
Objectives: To describe and understand childrens thoughts and feelings related to visiting
Children;
critically ill relatives or family members in an adult intensive care unit.
Critically ill;
Design: A qualitative descriptive study.
Family;
Method: Twenty-eight children (14 girls; 14 boys) that had visited a critically ill relative or
Feelings;
family member in an adult intensive care unit were invited to participate in an interview.
Hermeneutics;
The material was analysed inspired by Gadamers hermeneutic philosophy and Doverborg and
Intensive care unit;
Pramling Samuelssons method about interviews and dialogues with children.
Qualitative study;
Results: Children with a seriously ill/injured relative suffer. However, visiting seems to alleviate
Relatives
suffering. Visiting and being present as a part of the situation brought positive feelings of
involvement and made it possible to show that they wanted to care for the relative. The sick
relative was always on the childs mind and seeing and being with them in the intensive care
unit resulted in relief and calmness, even if the relatives situation sometimes evoked feelings
of despair and fear.
Conclusion: Knowledge and awareness of the fact that children are affected by the relatives
condition and for their wellbeing needs to visit, caring actions must focus on helping the child
become involved in the relatives situation in order to alleviate suffering.
2015 Elsevier Ltd. All rights reserved.

Corresponding author. Tel.: +46 70 2067481; fax: +46 36 101250.

E-mail addresses: susanne.knutsson@hhj.hj.se (S. Knutsson), ingegerd.bergbom@fhs.gu.se (I. Bergbom).
1 Tel.: +46 70 6043427.

http://dx.doi.org/10.1016/j.iccn.2015.07.007
0964-3397/ 2015 Elsevier Ltd. All rights reserved.
34 S. Knutsson, I. Bergbom

Implications for Clinical Practice

Restriction on visiting policies for children needs to be removed and changed towards a more open policy and family
centred care in order to meet their needs. Being aware of the fact that the child is affected should lead to actions
that involve children in the situation as well as encouraging custodians to share their childrens experiences. Children
should not feel pressured into visiting and constructive ways need to be found whereby children who are not visiting
or are not allowed to visit, can maintain links by sending in a drawing or obtaining information about the relatives
situation.
Nurses can prepare visiting children by, with different tools such as photos and dolls, describing what they might
see before entering the critically ill relatives room and asking about childrens previous experiences with similar
situations. During the visit, nurses could explain and instruct the child on what the equipment is used for, assist them
in forming contact with the relative and encourage them to ask questions.
Nurses need to be sensitive to childrens different expressions of suffering and the underlying feelings. Caring actions
must focus on what gives the child meaning, happiness, satisfaction and relief. It is of importance to tell the truth
and give information on what has happened, letting children know they are needed, alleviating their guilt, helping
the child to reach reconciliation and to nd rest (achieve a state of calm) and helping the child as far as possible to
remain in a meaningful context.

Introduction the ICU (Anzoletti et al., 2008; Johnson, 1994; Soumagne

A critical illness/injury sustained by one family member
affects all the others in the family (Cunningham, 1978;
Hanson et al., 2005; Linnarsson et al., 2010) and there-
fore visiting a loved one is of importance to both patients
(Bergbom and Askwall, 2000) and family members (Knutsson
et al., 2008; Titler et al., 1991). However, children are not
encouraged to visit patients in adult intensive care units
(ICU) and various reasons for restricting childrens visits
have been given, such as: too young an age, infection risks
and perceptions about the patient or the ICU environment
as frightening (Clarke and Harrison, 2001; Halm and Titler,
1990; Johnson, 1994; Knutsson et al., 2004; Knutsson and
Bergbom, 2007a; Liu et al., 2013). Visiting situations are
also mostly arranged and managed by adults and not based
on childrens experiences, thoughts or needs (Nicholson et
al., 1993; Clarke, 2000).
According to Pierce (1998), Anzoletti et al. (2008),
Vandijck et al. (2010) and Spreen and Schuurmans (2011)
professionals ambition to protect and care for the patient
has contributed to limited practice oriented family-centred
care where children are restricted from visiting.
Studies about the overall effects on children of a crit-
ically ill family member (Clarke, 2000; Craft et al., 1993;
Nicholson et al., 1993; Titler et al., 1991) and childrens
experiences of the ICU environment when visiting a rel-
ative cared for in the ICU (Knutsson et al., 2008) have
been presented. However, knowledge of childrens thoughts
and feelings of visiting a seriously ill/injured relative being
cared for in an adult ICU is sparse. Therefore this study
aims to describe childrens thoughts and feelings of visit-
ing. Such knowledge could contribute to a more practice
oriented family-centred care, including appropriate nursing
care interventions that meet the childs unique needs.
Background
The familys visits in the ICU are important for both the
patient and the family (Olsen et al., 2009). Despite this,
relatives and hospital staff restrict childrens visits to
et al., 2011; Vandijck et al., 2010). However, Knutsson and
Bergbom (2007b) found that custodians who allowed chil-
dren to visit felt that the visit was good for them as it
increased their awareness of the relatives condition. Deny-
ing children to visit was felt to leave them with conjectures
and questions (Knutsson and Bergbom, 2007b). Visiting was
seen to be of value and did not risk affecting the childs
health and wellbeing. Being involved in the relatives sit-
uation was felt as a positive experience even if children
initially felt afraid (Knutsson et al., 2008). Johansson et al.
(2005) reported that when the child feels like a participat-
ing actor and has access to information and education, the
child may feel secure to express and share their feelings.
Craft et al. (1993) found that involvement reduced feelings
of separation, fear, guilt and helplessness.
The ICU environment may be experienced differently due
to high-tech devices with sounds and alarms (Clifford, 1986;
Vandijck et al., 2010) and patients behaviour and look may
be changed, which all may be experienced as frightening
(Knutsson et al., 2008; Olsen et al., 2009). However, if chil-
dren are prepared for the visit they do not experience fear
(Craft et al., 1993; Hanley and Piazza, 2012).
This study is grounded on Erikssons (1993) theory of car-
ing where the goal is to alleviate suffering and promote
health and well-being. Health is seen as the experience
of physical, mental and spiritual well-being. Suffering is
related to life, sickness and caring and when humans expe-
rience suffering the human being is affected as a unit
(Eriksson, 1993). The study is also grounded on the pre-
sumption that severe illness/injury and the death of a
family member is a life-changing process for the whole
family and has signicant impact on their outlook, on life
(Cunningham, 1978; Barnhill, 1979; Hanson et al., 2005;
Hartog and Jensen, 2013) and on how to understand life and
its meaning (Rehnsfeldt and Arman, 2005). Eriksson (1993)
also stressed human beings dependence on each other
when adopting Lgstrups (1994) thoughts that each per-
son lives in an inescapable situation of mutual dependence
on other people. This interdependence is often obvious in
families.
Childrens thoughts related to visiting ill relatives 35

Aim Table 1 Gender and age (years) of the visiting child

(N = 28), the sick relatives relation to the child and the
The aim was to describe and understand childrens thoughts relatives condition at the time of the interview. Age
and feelings related to visiting critically ill relatives or family range = 412 years (9 children < 7 years, 19 children > 8
members in an adult ICU. years).

Interview Gender Age Relation Condition

Method person

1 Boy 10 Grandfather Deceased

Design
2 Boy 12 Grandfather Deceased
3 Girl 12 Grandmother Deceased
The methodological and interpretative framework was 4 Girl 10 Mother
inspired by Gadamers hermeneutic philosophy as we wanted 5 Boy 11 Grandmother
to understand childrens thoughts and feelings. Children can 6 Girl 14 Grandmother
be given the opportunity to reect reason and problematise 7 Boy 5 Grandfather
their experiences by being asked about their thoughts and 8 Girl 15 Grandmother
feelings (Doverborg and Pramling Samuelsson, 2000). Under- 9 Boy 12 Grandmother
standing what another person says means understanding 10 Boy 12 Grandmother
something rather than re-experiencing the persons expe- 11 Girl 15 Grandmother
riences. Access to this world is through language (Gadamer, 12 Boy 10 Grandmother
2000). In this study the researcher conducted a dialogue 13 Girl 9 Grandfather
comprising questions asked to the children and the chil- 14 Boy 5 Grandfather
drens answers and telling. Sometimes childrens way of 15 Boy 5 Grandfather
expressing thoughts and feelings in words are limited 16 Girl 8 Grandfather
compared to adults, however instead they may possess 17 Girl 14 Grandmother Deceased
spontaneity (Matthews, 1982). Previous experiences are 18 Boy 7 Father
important for the childs way of thinking about the world 19 Girl 12 Grandfather Deceased
and for the childs understanding and cognitive development 20 Girl 10 Grandfather Deceased
(Doverborg and Pramling Samuelsson, 2000). Experiences 21 Boy 5 Grandfather Deceased
are not, according to Gadamer (2000), wordless but seek 22 Boy 7 Father
and nd words that can express, so even few words may be 23 Girl 4 Father
rich in content. Childrens ages in this study varied. Usu- 24 Girl 10 Father
ally the younger children used few words and sentences 25 Boy 6 Father
and to a greater extent answered the interviewers ques- 26 Girl 5 Brother
tions. The older children also more or less answered the 27 Boy 12 Brother
interviewers questions, but sometimes told about some sit- 28 Girl 10 Father
uations or occurrence they had experienced as a story.
Doverborg and Pramling Samuelsson (2000) stress there is a
great variety of childrens ways of thinking about particular
content, however, the younger childrens language ability is ICU both verbally and in written form informed by the ICU
less and therefore they need more specic questions to be nurse about the study. All custodians contacted accepted
able to express their thoughts. their childs participation in the study. They were asked by
the nurse to ask the child at home about participation. The
nurse also informed the custodians that they would be con-
Data collection tacted by phone by one of the researchers within a week.
The researcher consequently contacted the custodians by
Twenty-nine children (15 girls; 14 boys, 417 years, mean phone and asked them if their child was interested in par-
9.5 years), who had visited a critically ill relative or family ticipating in the study. The custodian and child received oral
member cared for at an adult ICU, were, by the researchers, and written information by the researcher at the time of the
invited to participate in the study. The children had experi- interview and signed an informed consent.
ences from four different general adult ICUs; one university, The interviews were conducted (by the rst researcher)
one county and two district hospitals. Twenty-eight children according to Doverborg and Pramling Samuelsson (2000) rec-
agreed to participate. One child, a 12-year-old girl, declined ommendations and guidelines on how to approach, act and
participation due to psychological stress caused by the rela- talk to children. The children were informed in advance, by
tives situation. All children wished to visit and none of them their custodian, that the researcher was coming and that
had visited an adult ICU before (Table 1). No child younger they were going to talk about the childs visit to the ICU.
than four years visited the ICUs during the study period of The childrens custodian/custodians were in the same room
15 months. It was assumed that all children who had visited or in the room next door during the interview. Before the
their relative or family member had a close relationship to researcher started the conversation with the child, they
their relative/family member. chatted for a while. The conversation started with the
All custodians of all children who had visited a critically open question What was it like to visit your XX at the
ill relative during the study period were contacted in the ICU? The child was also asked to tell what he/she saw
36
and felt/thought when entering the critically ill relatives or
family members room. Questions such as, Tell me more?
How do you mean? were asked in order to clarify and to
understand the childs experiences, but also to specify the
question and let the child think. It may have been dif-
cult for some children to talk about their visits as these
may be connected to feelings of sorrow, fear and loss. If
the children had difculties describing their experiences,
they were asked to draw a picture of what they saw and
experienced during the visit. Five of the younger children
took up the offer. The researcher then asked questions that
derived from the picture and the children told about what
they had drawn. It has to be noticed that interviews based
on childrens statements usually differ from adults in rela-
tion to the number of words, symbols or metaphors, number
of sentences and their willingness to talk about the con-
tent and answer adults questions (Doverborg and Pramling
Samuelsson, 2000).
After interviews with 28 children, saturation could be
seen since no more nuances or information appeared in
the childrens statements. No more children were, there-
fore, included. The conversations lasted approximately
4560 minutes, were tape-recorded and transcribed. All the
children wanted to have the conversation at home; the
venue and time were decided by the child/custodian. The
interviews were conducted within 2.5 weeks to 3 months
after the childs visit.
Data analysis
During the whole interpretation process, the researchers
pre-understanding, which included the theoretical frame-
work previously described and experiences in intensive
nursing care, was used in a hermeneutic spiral; from pre-
understanding to understanding and to new understanding
and from parts to the whole text and back again. These
movements resulted in new questions to the text and a
new understanding arising again. However, it is not pos-
sible to be fully aware of ones own pre-understandings
and prejudices in the process of interpretation. It therefore
has to be emphasised that other interpretations are pos-
sible in relation to other interpreters pre-understanding.
However, the interpretation made is judged as the most
probable based upon the interviewers pre-understanding,
the questions asked, what was talked about and the chil-
drens statements. The text from the interview with the
child has been interpreted and analysed by both researchers
inspired by Gadamers hermeneutics and Doverborg and
Pramling Samuelssons (2000) method. The text from all the
interviews was read through separately several times.
Questions to the text were then posed regarding the
thoughts and feelings expressed in the text in conjunc-
tion with the childs visit to the critically ill relative or
family member.
Units of meaning, which described the childrens thoughts
and feelings, were identied. Units of meaning with sim-
ilar content were then gathered into sub-themes and
thereafter into themes that derived from the data.
S. Knutsson, I. Bergbom
Table 2 Themes (2) and sub-themes (7).
Themes Sub-themes
Always in my mind * Feeling compassion
* Feeling loss, sadness and
sorrow
* Feeling fear and that
something is wrong
* The threatening seriousness
* Feeding hope and despair
To witness and see for * Seeing something dreadful
oneself * Seeing and feeling relief
Ethical approval
The Research Ethics committee at the university approved
the study and ethical issues were considered using the
principles of the World Medical Associations Helsinki
Declaration (2005). Children are vulnerable in relation to
adults right to decide for them. Custodians in this study
were asked to ask the children if they wanted to partici-
pate in the study and before the conversation started the
researcher also asked the child about participation.
Results
The text revealed that visiting and being present as a part
of the situation brought positive feelings of involvement and
made it possible to show that the children wanted to care
for the relative. Two themes based upon interpretation of
the childrens statements were identied: Always in my
mind, meaning that the sick relative was always on the
childs mind. To witness and see for oneself, meaning
that by seeing and being there, close to the relative/family
member was experienced as a relief even if the relatives
situation sometimes evoked feelings of despair and fear.
These themes summarise the interpreted meaning and con-
tent inherent in the subthemes (Table 2).
Always in my mind
The childs thoughts in conjunction with the visit to the
relative were focused on the sick person. Visiting was of
importance because there was a desire that the relative
should not be left alone at the hospital. The children
expressed that the separation meant that they never felt
whole, because they felt that something was lost and
missing and this occupied the childrens thoughts. There
was something extraordinarily wrong going on and this stuck
in the childrens mind leaving them in an unpredictable
agony. The thoughts concerned worries about the out-
come for the sick family member and this was connected to
a feeling of tenseness and of being outside and separated
from the sick person. There was always a deep and strong
desire/longing that everything should be as it was before,
but the most important thing was to get to know the sit-
uation and to be included. To visit was to show that they
cared about the relative and that they thought about them
Childrens thoughts related to visiting ill relatives
and that they wished and hoped that the relative should
survive.
Feeling compassion
The children felt compassion for their relative meaning that
they felt with the person. They did not want their relative
to be so sick; to be helpless and exposed: . . .he looked a lit-
tle pathetic (25). They thought about whether there were
something they could do or whether they could do some-
thing more for the sick person than just being close and
helpful. They also tried to empathise with the sick person
I thought. . .ugh, he has a hole there (in the throat). How
terrible it must feel to have such a thing there. . . (19).
Feeling loss, sadness and sorrow
During the interview a number of children cried when they
spoke about their relative dying. They felt sad and missed
their relative. If the relative survived the critical period
the child felt sad because the relative was in the wrong place
I didnt want her to be there. . . she should be at home
with me (cries). . .. (3). One boy seven years and a girl four
years said that their dads looked injured and expressed it
as: I missed him. . . (22), . . .. I want my father at home she cant breathe by herself. . . if you take it away then
(23). This created feelings of sorrow and disruption of the
normal every-day life. After the visit and back in their
daily routine these feelings returned from time to time. The
children were also sad about the fact that their relative had
actual sores and that they had changed so much in appear-
ance, for example, had become swollen or thin. Sorrow and
sadness were also experienced when the child had to leave
as they did not feel right to go and leave the relative in the
hospital. Some of the children wanted to be close to the
relative all the time. In some cases, they felt that the staff
did not leave them alone with their loved one, which hin-
dered them from being with them and having their relative
for themselves.
Not having the opportunity to be with the relative in pri-
vacy and in peace and quiet led to a feeling of loss and
sadness about being separated from the relative. Life was
not as it used to be any longer. This brought forth feelings
of longing for the ordinary life that existed before the event
and unfairness.
Feeling fear and that something is wrong
The fear could express itself as pain or tingling in the
body when the children realised that the condition for the
relative was serious. This was also true when they were going
to the hospital as they could not imagine what they would
see: . . .so it tingled in my stomach and. . . I thought. . .
there is my grandmother lying in the bed. . . and that is not
right. . . (3).
One boy of 12 years did not want to visit because he
could not stand hospitals and because he was afraid to visit
when the relatives condition was bad. Afterwards, when his
relative died, he wished he had visited more.
They expressed feelings of being afraid of reality, afraid
of the not right every-day life and that something was
wrong, how this could happen and a tingling sense of
unreality.
37
The threatening seriousness
The text also revealed thoughts about what would happen;
how the relative and family would manage the illness/injury
and what life would be like for them all; how long the rel-
ative would actually need to remain in the hospital and
how the recovery would be. The children also thought
about whether the relative would not survive and what this
would mean. . . . it was good to see grandfather because
he had something that can cause death. . . (7). In such
a situation they could feel frightened at the thought of
losing their relative. It was also stated that they thought
about the consequences for their other relatives, i.e. for
those who would be left if the relative died and how they
would manage how will Granddad manage if Grandma
disappears. . . these thoughts arose often. . . what would it be
like. . . (8).
In some cases the children did not know what had hap-
pened to the relative but they understood that the relative
was in a serious condition and could die.
By meeting the relative they understood the seriousness,
how critically ill the relative actually was and their depend-
ence on technology: I didnt know it was so bad. . .(6),
it was when I entered the room. . . it was then that it
struck me. . . oh my God whats happening (8) . . .Oh. . .
shell die. (11), . . .I thought about if it began to rain
and we had thunder and lightning. . .then there could be a
power cut. . . (12). One child told that her grandmother
was not herself as she was so confused and not as she once
was. Then the child felt fear and panic that grandmother
might die. I did not know that it was that bad as it looked
and then. . . I was afraid that the operation may fail and it
was something really serious (11). Not knowing the out-
come led to thoughts of uncertainty, which in turn led to
some kind of loneliness and thoughts of not managing ones
own survival and a feeling of not being able to inuence or
change.
Feeding hope and despair
The children hoped that their relative would be well but
this hope was sometimes transformed into despair when
there was deterioration of the relatives condition. When
they understood how sick the relative was, that the rel-
ative could die, was dying or dead, hope disappeared
. . . there was a little hope. . . but then a new came
(stroke). . . (2). One child was afraid that a the straight
line on the monitor suddenly would appear, symbolising
death.
In some cases the childrens imagination of what they
might see when they entered the patient room was not in
accordance with what they then really saw. Sometimes it
was not so bad that they had imagined I thought that
it would look worse. . . I see TV. . . (18). The meaning of
feeling hope comprised a positive expectation that the
relative would make it, become well again and return
home. Hoping for this was a consolation and it alleviated
and suppressed the feelings of despair. The children stated
that feelings and thoughts could jump between hope and
despair and that in their despair they waited for hope to
return.
38
To witness and see for oneself
By seeing the relative in the ICU environment, the children
felt some kind of relief as they could see that the relative
was still alive. By seeing and meeting the sick relative in the
patient room and being close together, feelings of loss were
contradicted and the children felt calm. Being close, seeing
and meeting the person created feelings of relief, satisfac-
tion and happiness. However, to see also meant to witness
events and things which were experienced as dreadful.
Seeing something dreadful
Children told that they saw things that were experienced
as dreadful. One child found it awful to see his father with
tubes and lines in his mouth and arms and all the scars on
his body after a trafc accident. Another boy said that he
only thought of the wound on his grandfathers head dur-
ing the visit and that it looked awful. One boys grandfather
died following an operation. It was experienced as awful to
witness that all lines, the tube and machines were taken
away and to see his grandfather dead. He felt powerless
and expressed I could do nothing, not even cry (1). It was
felt as creepy to see how sad the other family members
were and to see how critically ill the relative was. One child
who visited her mother found it troublesome before vis-
iting but those feelings disappeared when seeing her mom
. . .it was my mom (4) in the bed even if it was experi-
enced as awful and creepy to see her swollen face and
coated tongue. Other children experienced that it was awful
to see the relative with yellowish complexion and unable to
contact, but that it anyhow was good to see and meet the
relative.
To see something awful and creepy led to feelings
of powerlessness and hesitancy. It also brought feelings of
inability, which created a total paralysis and absence of tears
and it had a tendency to stay in their minds.
Seeing and feeling relief
The children felt a sense of gladness after having seen the
relative in reality. They experienced that the heavy lump
in their stomach disappeared and was replaced by a feeling
of peace. They were glad and overwhelmed that the relative
was alive and still with them: . . .when I saw grandma I
was happy. (17). Seeing the relative and being convinced
about that they were alive brought joy and calm into their
heart: . . .I was glad that I had the strength to enter the
room. . . (9). To see and be with the relative eased the pain.
It meant a lot to the children to just be with the relative, to
see, to be involved and having the opportunity to show that
they cared about the relative that they felt needed.
The children were also proud over themselves that they
dared to visit and show that they cared for the relative. By
doing this they got a feeling of that they had done some-
thing good. The child was happy if the relative realised and
became aware of the childs presence: I hold her hand and
then I felt that she squeezed my hand a little so I think that
she felt that I was there with her (17).
The feelings of realising that a loved one is still alive
also led to feelings of happiness. At the same time the seri-
ousness became more obvious. These diverse feelings led
to confusion and to feelings about not being sure. These
S. Knutsson, I. Bergbom
feelings competed in the childs mind and brought feelings
of unrest.
Discussion
The children expressed compassion for their sick relative.
According to Eriksson (1993), feeling compassion could be
interpreted as sensitivity to the pain and suffering of oth-
ers. By suffering with the other, the child seemed to feel
involved, sharing the relatives suffering and thus alleviat-
ing the suffering of the relative. Being able to do this and
receiving conrmation that it is important for the relative,
could create a sense of meaning (Eriksson, 1993) for the
child and lessen the burden of sorrow and ones own suffer-
ing. Compassion could also relate to feelings of belonging
and mutuality and contribute to reconciliation (Eriksson,
1994) that can be seen important in a health process. Rec-
onciliation is, according to Gustafsson (2012), a process and
implies an offering, a giving up on what previously was held
as true and enabling a person to reach wholeness, meaning
and understanding by seeing the world with new eyes and
daring to live in truth and reality a path to health.
The children also realised that the relative was depend-
ent on machines and the care they received. Therefore,
information/explanations about the technical equipment
and what is done for the relative is important as it can
make the child feel condent and secure. Also, Dyregrov
(1990) and Doverborg and Pramling Samuelsson (2000) have
the opinion that children can understand what they see and
hear if it is explained properly.
The children stated that to see the relative led to feelings
of relief and involvement as it could contradict their imag-
ination about the situation, as fantasies can be worse than
reality (Dyregrov, 1990). To see something means that you
share something with someone else, that you are involved.
This may alleviate suffering (Knutsson et al., 2008). Dyregrov
(1990) argues the importance of childrens physical presence
and involvement, as it concretises what has happened and
makes the situation real. This concretisation is important
for the childs further understanding of what has happened.
This is also conrmed by Hanley and Piazza (2012) and Blot
et al. (2007).
To realise that the relatives condition was serious and
that they might die evoked feelings of despair, fear, worry
and sorrow and these contributed to the relative always
being in their mind. According to (Monroe and Kraus, 1996),
bereavement begins before death and involves a feeling of
grief and lack, which can be related to the absence or loss
of someone and may, according to Eriksson (1993), lead to
suffering. Children expressed that they did not want the
relative to be left alone at the hospital. This separation
showed that normal, day-to-day life was cut off from the
childs world and way of understanding life and such expe-
riences are understood as suffering (Rehnsfeldt and Arman,
2005). It is obvious that alleviation of childrens suffering is
of vital interest, but their expression of suffering may be dif-
cult to discover and meet, as children cannot or dare not
always talk about their feelings and experiences (Nicastro
and Whetsell, 1999) or use other words. For example, fear
and tension was expressed as a tingling in their body
when imagining, realising the seriousness of the relatives
Childrens thoughts related to visiting ill relatives
condition or thinking of something scary. Similar expressions
of fear have been described by Nicastro and Whetsell (1999).
Additionally, being frozen like a stone (4) was expressed
as a response to seeing something awful or creepy, a feel-
ing of emptiness and not being able to cry or show emotions.
Therefore, sensitivity and respect for different expres-
sions is necessary, including an ethos of respect and dignity
(Ekebergh, 2009; Eriksson, 2010). Taking time for explaining
and showing interest in the childs thoughts, questions and
experiences and supporting the custodian will contribute
to alleviation. The childs visiting and witnessing could also
alleviate their suffering as it was found that feelings of doing
something good for the relative and showing concern and
care led to relief and that the burden of sorrow and sadness
was easier to bare. Even satisfaction and happiness were
expressed in relation to visiting as doing good made the chil-
dren feel proud and being of importance. Lindstrm et al.
(2006) expresses that a person will experience absolute dig-
nity if she is able to full her function and responsibility in
being there for another person. This will conrm ones dignity
and may improve this persons health and wellbeing.
The children in the interviews also felt fear and that
something was wrong, a feeling which may be understood
as a mix of the illness being seen as a threat of life and that
it was unfair and that the relative should not be at the
hospital but at home. Gullone (2000) states that fear is felt
when there is a threat or risk of something and when it is
inescapable, anger will arise. Helping the child to control
fear and to develop an understanding of whats happening
(Brodin and Hylander, 2002) by telling and involving may
instill hope, trust and security (Linnarsson et al., 2010).
The children stated that they felt both hope and despair
and a continuous movement between these two feelings.
Eriksson (1989) states that in every situation of hopelessness
there is hope and switching between hope and hopeless-
ness and despair could be a struggle, which in itself can be
regarded as suffering. Not being able to rest and take repose
in thoughts may lead to unbalance (Asp, 2012). To be able to
hope offers a person consolation (Eriksson, 1989) and seems
to alleviate worry, uncertainty, fears and thoughts of death.
The hermeneutic approach and the method developed
for conducting and interpreting interviews with children
(Doverborg and Pramling Samuelsson, 2000) was found help-
ful when trying to describe and understand the childrens
thoughts and feelings. To seek the views of children has
become essential in professional contexts (Sommer et al.,
2012) and has been given added weight by the United Nations
Convention on the Rights of the Child (1990). The inter-
viewer did not have previous experience of interviewing
children, which can be seen as a limitation as Doverborg
and Pramling Samuelsson (2000) recommend that the inter-
viewer carry out several interviews in advance. The youngest
children (45 years) were somewhat difcult to interview
and they did not tell very much. Instead they answered ques-
tions but often with very few words or sentences, maybe
due to limited vocabulary and lack of experience of this
kind of situations. A particular age group was not chosen
since we did not want to compare experiences or relate
answers to age, as childrenss development and learning is
related to previous experiences (Doverborg and Pramling
Samuelsson, 2000; Sommer, 1997). The childrens limited
capacity to describe different feelings (Dyregrov, 1990), the
39
interviewers limited skills, the complexity of the subject
and that younger children do not remember in the same
way as older children, are all aspects that must be taken
into account when judging the quality of the interview text.
Childrens relationships with the relative varied as has been
described in Table 1. It can be discussed if the relation-
ship inuences the childs experiences of the ICU visit, for
example, if the patient is a parent, sibling or grandpar-
ent. Our ambition was not to compare such experiences
as the quality of a relationship is usually not related to
type of kinship or age. However, we wanted to obtain a
great variety of experiences and relationships and there-
fore we did not ask about the quality of the relationships
with the patients as it is difcult to assess such quality dur-
ing an interview with a child. However, further research
involving both parent and child concerning this topic may be
valuable.
The conversations with the children were conducted
on average three months after the visit and not directly
after the rst visit. It was considered inappropriate and
ethically unsuitable to ask the custodians, whose family
were in a difcult situation, about participation and inter-
view. There is, however, a risk that the children did not
remember all the details. However, it was felt that chil-
dren remembered what they had experienced and thought
in conjunction with the visits, as the relatives serious illness
could be seen as a life-changing event. This study focused
on childrens experiences of visiting a critcally ill/injured
family member/relative where all children claimed that
they wanted to visit. However, childrens experiences of not
wanting or not being allowed to visit are also of interest,
but the Research Ethics Committee did not approve par-
ticipation of children who were not allowed or wanted to
visit.
Conclusions
Children who are stricken by a relatives critical ill-
ness/injury suffer. Visiting seemed to alleviate suffering as
children felt that they were doing something good, showing
concern and at the same time being involved and needed.
However, visiting also evoked feelings of fear and a tension
about what they were going to face. By seeing the rela-
tive with their own eyes, it was possible to feel relief and
calmness.
Research about childrens experiences before, during and
after a visit is needed, especially from a long-term perspec-
tive. Research is also needed about children who are not
allowed to visit and about the effects of facilitated visits
comprising a caring conversation.
Funding
The authors have no sources of funding to declare.
Conict of interest statement
The authors have no conict of interest to declare.
40
Ethical statement
The Research Ethics Committee at the University approved
the study and ethical issues were considered using the
principles of the World Medical Associations Helsinki Decla-
ration (2005). Children are vulnerable in relation to adults
right to decide for them. Custodians in this study were asked
to ask the children if they wanted to participate in the
study and before the conversation started the researcher
also asked the child about participation.
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