Norwegian Centre for Research Data (NSD) approved the study
(31564/ 09 26 2012). The study was carried out in accordance
with the Declaration of Helsinki’s ethical principles for
The interviews reflected family members’ experience of
responsibility, need for more knowledge and experiences in
encounters with the health services.
In this article we explore the following themes:
- involvement, willingness to assume responsibility and desire
- unclear responsibility and insufficient flow of
- available and competent supporters
The first theme is about family members as active participants
in the management of the illness and their desire and need for
knowledge. The second theme is about their encounter with the
complexities and unclear collaboration in the health services, and
the last theme explores family members’ experiences with, and
the significance of, having competent supporters in the health
1) Involvement, willingness to assume responsibility and desire
Family caregivers described a daily routine with strong
involvement in daily tasks related to the illness, with follow-up
of treatment, handling of medication and assessment of whether the
illness changed character. The majority referred to
themselves as «co-walkers» and resource persons in
relation to the illness. One family caregiver used the term
«playing on the same team as» the partner.
Several said they came along to examinations, treatments and
controls. They expressed a wish and need to assume
responsibility; participation was important for their own sake and
linked to both internal and external expectations. One family
member said: «He (the patient) really wants us to
accompany him to the doctor and to everything. It is quite
all right that we care about this and that». Another
said she wrote down all information and everything that happened:
«I have a phone where I enter everything and know exactly
what to say to move on … I go along all the time to
doctor’s appointments and look after for medications and
such.» Several family members described concrete
situations where they participated actively. “When he
became ill and was admitted to hospital, of course I had to be
there all the time to watch out for him”.
One common feature was the wish for continuous
information. Several family members described the need for
sufficient knowledge on symptoms of a worsening of the heart
condition, so that they could react and act adequately when the
patient’s situation changed. Several family members
said that good and factual information was important to them.
One respondent said: «Proper information and whether there
are some symptoms that I should respond to … so that I can
respond». Information on the treatment and
medication was also important. They described situations
where they felt insecure, where they felt that information and
insight into the situation would have made them more
confident. One family caregiver put it like this:
«I have been really scared of more changes, also due to
insufficient information … (I do not know) what is dangerous
and what is not». Another respondent described it like
this: «Really good and to the point information would have
calmed me down».
Several family members described situations where they were not
given sufficient information. They talked about situations
where they felt like a nuisance – where health personnel were
too busy and did not seem to have enough time to inform. The
medical terminology used was also a challenge to some. One
respondent described the experience thus: «We have to nag
about everything to get an answer, and then they give us these
doctors’ statements … I say speak Norwegian, so
I can understand, I really do want to have it
expressed». The search for information gave some family
members an active role with clear strategies and preparedness in
the encounter with health workers. One family caregiver
described it as follows: «Sometimes when he is discharged
(from hospital), I have written a note, and then I have been given
answers, but then he (the doctor) is on the phone and the next
patient is waiting … then you feel it is all a bit too
2) Unclear responsibility and insufficient flow of
Family members described experiences with the health services
where several actors have part responsibility for the treatment and
follow-up of the heart failure patient. They found it
challenging to move between the specialist health services and the
municipal services. The meeting points in the specialist
health services were the ward at admission and at specialist
follow-up at the cardiac outpatient clinic. During admission
to hospital they had to deal with a variety of medical personnel
involved in the treatment on the ward. The contact network in
the municipal services also involved several individuals: primary
physician, rehabilitation units and employees in the home care
services were mentioned. Some respondents said they
experienced the communication between health personnel as
inadequate, and that this constituted an extra burden. One
family member put it like this: «It was impossible to relate
to just one person, there were just too many of them (hospital
doctors), and I didn’t feel I could bother them and ask too
much there either. And when we came to the primary physician,
he had to read through all the papers, he didn’t quite get it
When the information did not quite add up, the family members
were at a loss as to whom to trust, and several stated that they
felt they were on their own. Episodes were described where
the family member had to be the link between the specialists in the
hospital and the primary physician. One respondent put it
like this « … and I had to start explaining to the
primary physician that they said this and that at the hospital and
that he shall have such and such medication for so and so
long». Another family member experienced being given
the responsibility for coordination when she discovered a lapse in
the information between the primary physician and the hospital
doctors: «I do not want such great responsibility, I do
not want to know more than them when he is ill. I just
don’t want that.» Several respondents described
it as a burden and a source of anxiety when health personnel did
not agree on treatment: « … that worries me, for
a cardiac specialist should know more than a general
3) Available and competent supporters
Knowing whom to contact when they needed answers to questions or
needed someone to share their worries with was important to family
members. Several respondents described the heart failure
outpatient clinic with follow-up and specialist competence as their
most important support arena: «That they follow up, and
that we do not have to nag to get an appointment».
Several respondents said that knowing that they as family members
could call if they needed to, made them feel appreciated, and made
them feel more confident: «When I wonder about
something, I have to call her (nurse). If I hadn’t met
her, I don’t know, but she has been amazing …
». This availability was also described as being met
with friendliness and attention.
Several respondents emphasised that a nurse at the heart failure
outpatient clinic was an important contact person who helped them
gain knowledge and understanding of the situation: «She
explains so well, and she tells us what to do, and that is just
wonderful. She does that every time we are there … and
she tells us constantly why he is like that and what to watch out
for, that has just been great.» The heart failure
outpatient clinic was described as a hub where the nurse has a
coordinating role and collaborates with other health service
personnel from whom the patient receives services; such as home
care nurses, primary physician and specialist. Some
family members mentioned nurses in the home care services as well
as important supporters: «Home care nursing is
fabulous, we have met just the right people all the time, it is
great». Several respondents described situations where
the nurse had cleared up and set things straight when the
information was inconsistent and had prescribed treatment.
Competent nurses were greatly appreciated resources.
The findings showed that family members have a need for relevant
and precise information and qualified partners, included access to
medical personnel with specialist competence. The family
members we interviewed made it clear that it is difficult to be the
resource that political intentions state they should be (12,
17). They wanted to know and understand more about what went
on with their close ones suffering from heart failure in order to
handle the situation better. Family caregivers need knowledge
on the disease itself, the significance of symptoms, treatment and
observations in order to develop the competence to manage the
illness. Family members may experience an extra burden of
anxiety and insecurity as a consequence of insufficient information
on the illness. We make this clear in our first article
Studies have documented that disease-related information and
support to patients and their families contribute to better
disease-management and lead to a reduction in the number of
hospital admissions (9, 18). Involving family members when
informing the patient has the potential advantage that two remember
better than one, increasing the chances of proper adherence to the
treatment (19). Heart failure can influence the memory and
concentration of the patient (20, 21). Our findings show that
family members have key tasks in the follow-up of the treatment and
perform complex tasks to strengthen the patient’s ability for
self-management of the illness. The family members we
interviewed also said that their own need for information was
related to being less worried for disease-related events.
Prior studies show that being a family member of a heart failure
patient is demanding (11, 14, 22-27). Other studies show that
insufficient and ambiguous information in relation to an illness
gives an increase in the feeling of insecurity (8).
Family members who are attentive to changes in the symptoms must
be able to understand what to look for, and what the various signs
mean (14). The absence of proper information to family
members may be caused by a series of circumstances.
Information to family members on the health condition of the
patient and treatment depends on consent from the patient, if the
situation demands it (28). The way patient confidentiality is
interpreted and practiced by health personnel may be a factor in
the involvement of family members.
Bøckmann and Kjellevold (29) point out that the way such
regulations are practiced may constitute an obstacle more than the
law itself, and that uncertainties around the limitations of
patient confidentiality may restrict the amount of information
given to family members. The Patients’ Rights Act (30)
is clear on that next of kin shall receive information on the
patient’s health condition and the help given, if the patient
consents or conditions demand it. Norwegian studies show that
information in hospital frequently is given to patients without any
family members present, and that the patients have not been asked
whether they want their family members present (11, 32, 33).
There is evidently work to be done on how family members’
involvement can become an explicit and integrated part of the
professional practice of health personnel.
It is well documented that outpatient clinics lead by nurses
improve both survival and self-management behaviours in patients
with heart failure (34,35). Specialist nurses in heart
failure outpatient clinics offer consultations and coordination of
services for patient and family members, and may be contacted by
telephone. Health personnel who support and inform family
members will be able to strengthen the family caregivers’
chance to be co-players for the ill person, and to manage their own
situation (36). The majority of the family members we
interviewed felt significant and included when they were able to
take part in the follow-up of the heart failure patient. This
finding corresponds with findings from other studies (26,
An important finding in our study is that family members greatly
appreciated health personnel that were available and possessed good
medical knowledge. Several family members reported good
experiences with effective and knowledgeable employees in the home
care nursing services. These nurses had helped clear up
ambiguous information, dealt with deteriorating health and avoided
readmissions. This reflects the significance of high
competence in the home care services as well, especially competence
linked to identifying and acting when a patient’s conditions
deteriorates. Studies show that the complexities of heart
failure demand that nurses possess specialist competence in order
to adequately inform and follow up patients with heart failure, and
that there is a shortage of such competence (31, 35). A
particular challenge in the municipal health services is a shortage
of both specialist competence and continuity of the follow-up (38,
The main goal of the collaboration reform is well-coordinated
and unified health services (12). The reform entails a
shifting of tasks from the specialist health services to the
municipal health services. Family members interviewed by us
experienced the presence of a multitude of health service employees
involved in the situations of deterioration of the disease and
treatment. They met nurses and doctors at various service
levels and experienced it as unclear who was in charge at various
times, although the primary physician is defined as the axis of the
medical follow-up and treatment. The respondents said they felt
they had been given a great responsibility for coordinating the
services and this may indicate that the organisation of the health
services appear fragmented.
The complexity of heart failure demands interdisciplinary
follow-up and coordination, and this is clearly stated in the
recommended guidelines for heart failure patients (40). Prior
studies in other countries show that a lack of collaboration in the
follow-up between service levels is a known problem (41).
This also became clear from the PasOpp-report from 2013, a study of
patient experiences with Norwegian hospitals. Forty per cent
of the patients stated that the hospital did not collaborate
satisfactorily with the primary physician on what was the cause of
the patient’s hospital stay (42).
There is, in several countries, a shift toward nurses performing
diagnosis-specific tasks in the municipal health services as well
(43). We see this as an opportunity for letting nurses with
specialist competence on heart failure work as a professional
resource in teams with nurses in the municipality, making home
visits at need and having consultations with patients and family
members in a municipal cardiac outpatient clinic (44). Such
an arrangement can also help increase the competence of nurses in
charge of daily care of patients in the municipal health services,
in the patients’ homes and in nursing homes. Continuous
access to adequate medical competence in people who also know the
patient and family caregivers may give faster reaction to subacute
Studies show that nurses with specialist competence play a
significant role in the quality of the health services and should
be emphasised to a greater extent (45). The political signals
given in 2015 (St.meld. 26), emphasising a holistic health service
and an increase in competence (17), and the grant programme for
master’s degree in advanced clinical nursing (46), are
factors that may increase the quality of the services to patients
and family caregivers.
Strengths and weaknesses
A strength of this study is the open approach; no questions to
family members were decided in advance, as no Norwegian study has
been published on the experiences of this group of informal
caregivers. Another strength is that the initial analyses
were performed by each individual researcher, and later
collectively in the research group. The research group
reached consensus on the results through discussion. The
study’s sample has a large age span, a possible strength as
more nuances of experiences were revealed. A limitation of
the study is that the majority of participants were women, and that
the majority was recruited through heart failure outpatient clinics
with access to medical personnel with specialist competence.
Information on the medical severity of the heart failure was not
collected, and we have not uncovered whether the family
members’ experiences change character with the degree of
severity of the disease.
As the patients consented to their family members’
participation, we may have recruited family members in close touch
with and well involved in the patient’s situation and in the
collaboration with the health services. The study’s
respondents were recruited by a nurse who knew the patient and the
family, and we acknowledge the challenge to the volunteer aspect
when recruiting is done through health personnel. The researchers
made sure that the respondents were informed of their opportunity
to withdraw from the study before, under and after the
interview. Nobody chose to withdraw and several said it felt
good to be able to talk about their experiences.
Family caregivers wish to understand any changes in the illness
in order to support their close ones in the best possible
way. In spite of family members’ experience of
receiving insufficient information and an unclear services terrain,
they also have positive experiences with available and competent
nurses. The health services of the future have increased
attention to family caregivers’ involvement and the expected
increase in the number of patients with heart failure. In
order to keep up with this development discussions on the
responsibility to inform versus confidentiality and competence
increasing efforts for nurses will be of significance for the
quality of the services. Clearer communication between health
service personnel will also be important so that the family
caregivers may feel secure. In the municipal health services
the emphasis on collaboration and competence development has the
potential to give the heart failure patients and their family
members good quality health services. There is a need for
studies to examine the relationship between family members’
experiences, their assessments of the quality of the services and
the competence of the nurses that follow up patients with heart
failure in their homes.
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