653536
editorial2016
CNU0010.1177/1474515116653536European Journal of Cardiovascular NursingLuttik et al.
Editorial
Changing needs of heart failure patients
and their families during the illness
trajectory: a challenge for health care
Marie Louise Luttik1, Tiny Jaarsma2 and Anna Strmberg3
Date received: 16 March 2016; accepted: 16 May 2016
Introduction
Care for patients with heart failure is generally provided in
the continuum from prevention to diagnosis, treatment, care
towards end of life,1 with each patient having an own,
unique journey in living with heart failure within his or her
individual social context. Current guidelines emphasize the
importance of the patients own responsibility, self-care and
self-management.2 To be able to take this responsibility and
learn to perform self-care, patients need education and sup-
port from healthcare professionals. However, in their day to
day lives many heart failure patients depend on the support
of their families or social network. Family support is posi-
tively related to patient outcomes such as self-care, adher-
ence, mortality and health-related quality of life among
patients with heart failure.3-6 Families are often motivated to
support their relatives; however, providing care can also be
burdensome and cause emotional distress.7,8
Family members, close relatives and caregivers there-
fore should be included in education and psychosocial sup-
port needs to be provided to both patients and their families
and caregivers.2 At first sight this seems a straightforward
message and most nurses agree that family members
should be invited to attend clinics, to be informed and to be
allowed to participate in care. However, formal family
assessments and active family engagement still seem to be
scarce in clinical practice.9
The course of heart failure as well as the composition of
families or social networks and the quality of the relation-
ships within these families or social networks are highly
subject to change over time, causing a complex challenge
to everyone involved in the care for heart failure patients.
Changes in patients health and care
needs during the disease trajectory
In general, the severity of heart failure progresses over
time and therefore the caregiving demands on families are
often expected to change and intensify over time. There
is a growing number of descriptive studies addressing
Downloaded from cnu.sagepub.com by guest on October 10, 2016
EUROPEAN
SOCIETY OF
CARDIOLOGY
European Journal of Cardiovascular Nursing
2016, Vol. 15(5) 298300
The European Society of Cardiology 2016
Reprints and permissions:
sagepub.co.uk/journalsPermissions.nav
DOI: 10.1177/1474515116653536
cnu.sagepub.com
patients needs in the transition towards the palliative phase
of heart failure.1,10,11 There is a general call for awareness of
the broader needs of patients and their families beyond
those specifically linked to the heart failure state.12 During
the disease trajectory, different types of family support may
be in focus. For example, in the first phase of diagnosis and
optimization of the medical regimen, family support might
be focused on coping with a new diagnosis and its conse-
quences for future family plans. At the same time practical
help from a caregiver might be needed to change diet habits
or to learn to organize a complex medication schedule. In
the longer run, the need for motivational support might be
more relevant, for example to motivate the patient with
heart failure to adhere to life-style changes. Additionally
practical support, such as support to visit the clinic, might
also be needed. In another stage emotional support to deal
with the loss of independence and social isolation might be
more in focus. In this changing trajectory of support needs,
families themselves might also be in need of different kinds
of external support or resources and this should be recog-
nized by the health care provider.
Changes in the patients family and
social network
While the patients trajectory progresses, relationships
within the family or social network of the patient are also
1Hanze University of Applied Sciences, Research Group Nursing
Diagnostics, The Netherlands
2Department of Social and Welfare Studies, Faculty of Health Sciences,
Linkping University, Sweden
3Division of Nursing Science, Department of Medicine and Health
Sciences, Linkping University, Sweden
Corresponding author:
Marie Louise Luttik, Hanze University of Applied Sciences, Research
Group Nursing Diagnostics, Eyssoniusplein 18, Groningen 9714CE, The
Netherlands.
Email: m.l.a.luttik@pl.hanze.nl
Luttik et al. 299
subject to change over time. Relationships, especially part-
ner relationships, are affected following the diagnosis of
a cardiovascular disease.13 Families generally experience
distress in the process of adaptation to the new situation,
sometimes causing physical and/or mental health problems
within these families. During the disease trajectory, families
may also experience changing needs for support. Information
and education might be necessary to understand the diagno-
sis and patients treatment plan in the first phase. At the
same time, or maybe in a later stage, emotional support
might be necessary in order to cope with their own, new
situation, with changing roles and with changes in their own
personal lives. Facilitating optimal adaptation of families
and caregivers is important for patients support.
Adults social networks in general decline in size with
advancing age; patients and families may experience a loss
in their social relationships due to life events such as ill-
ness, physical and cognitive decline, and death.14,15 Family
members or other caregivers in the network may become
ill, physically less capable, develop sensory impairments
and have fewer support people to turn to.15 Providing care
may at some point become too burdensome and sometimes
impossible.15 A comprehensive assessment of the structure
and quality of the family or social network is highly neces-
sary and requires periodic monitoring over time.
Recommendations for future research
Within the last 15 years, several studies have been pub-
lished evaluating psycho-educational interventions by spe-
cifically addressing family relationships in patients with
heart failure and their caregivers. In this issue Stamp and
colleagues16 describe positive effects of a family partner-
ship intervention. However, much is still unknown about
the support needs of families or social networks in the care
for patients with heart failure. Current studies in patients
with heart failure and their families are mainly executed
using cross-sectional designs, with a majority of female
spouses included in these studies and with a focus on a
specific phase in the disease trajectory, mainly the chronic
or palliative phase.17 In order to be able to provide effec-
tive support to patients and their families, a better under-
standing of the changing needs of patients and their
families is needed. Furthermore, changes in the structure
and functional quality of the social network of patients and
how they may affect the amount and quality of support that
patients receive in managing their heart failure should be
studied.
Recommendations for education and
practice
Tapp and Moules9 describe that nurses view the family
as important in the care of patients with cardiovascular
Downloaded from cnu.sagepub.com by guest on October 10, 2016
diseases; however, formal family assessment and inten-
tional family engagement were hardly observed in clini-
cal practice.9 This might indicate that today support of
families seems spontaneous and generally based on the
health care providers individual experience. Education
in family structures and family functioning and skills
training in family assessment and family involvement
seem to be highly necessary, especially in basic, under-
graduate education. In patient care, support should be
more tailored to the specific needs of the individual fam-
ily. Periodically monitoring the patients social network
for its capacity to support the patient is advised to be a
standardized part of nursing care.
To conclude, we would advocate a family-oriented
approach for patients with heart failure and their families
in which nurses also assess the way that family members
are affected by the heart failure of the patient. We would
encourage clinicians, educators and researchers to include
family members as partners in the patients care teams,
however, with careful awareness of the health and health
care needs of these family members.
References
1. Kheirbek RE, Alemi F, Citron BA, etal. Trajectory of ill-
ness for patients with congestive heart failure. J Palliat Med
2013: 16: 478784.
2. Task Force for the Diagnosis and Treatment of Acute
and Chronic Heart failure 2012 of the European Society
of Cardiology. Developed in collaboration with the
Heart failure Association (HEART FAILUREA) of the
ESC. ESC Guidelines for the diagnosis and treatment of
acute and chronic heart failure. Eur Heart J 2012; 33:
17871847.
3. Rohrbaugh MJ, Shoham V, Coyne JC, etal. Beyond the
self in self-efficacy: Spouse confidence predicts patient
survival following heart failure. J Fam Psychol 2004; 18:
184193.
4. Wu JR, Moser DK, Chung ML, etal. Predictors of medi-
cation adherence using a multidimensional adherence
model in patients with heart failure. J Card Fail 2008; 14:
603614.
5. Gallagher R, Luttik ML and Jaarsma T. Social support
and self-care in heart failure. J Cardiovasc Nurs 2011; 26:
439445.
6. Wu JR, Lennie TA, Chung ML, etal. Medication adherence
mediates the relationship between marital status and cardiac
event-free survival in patients with heart failure. Heart Lung
2012; 41: 107114.
7. Stoltz P, Udn G and Willman A. Support for family
carers who care for an elderly person at home a sys-
tematic literature review. Scand J Caring Sci 2004; 18:
111119.
8. Agren S, Evangelista L and Strmberg A. Do partners with
chronic heart failure experience caregiver burden? Eur J
Cardiovasc Nurs 2010; 9: 254262.
9. Tapp DM and Moules NJ. Enlivening the rhetoric of
family nursing: There, in the midst of things, his
300 European Journal of Cardiovascular Nursing 15(5)

whole family listening. J Appl Hermeneutics 2012; 16
January.
10. Goodlin SJ. Palliative care in congestive heart failure. J Am
Coll Cardiol 2009; 54: 386396.
11. OLeary N, Murphy NF, OLoughlin C, etal. A comparative
study of the palliative care needs of heart failure and cancer
patients. Eur J Heart Fail 2009; 11: 406412.
12. Low J, Pattenden J, Candy B, etal. Palliative care in
advanced heart failure: An international review of the per-
spectives of recipients and health professionals on care pro-
vision. J Card Fail 2011; 17: 231252.
13. Dalteg T, Benzein E, Fridlund B, etal. Cardiac disease and
its consequences on the partner relationship: A systematic
review. Eur J Card Nurs 2011; 10: 140149.
14. Rosland AM and Piette JD. Emerging models for mobi-
lizing family support for chronic disease management: A
structured review. Chronic Illn 2010; 6: 721.
15. McLaughlin D, Vagenas D, Pachana NA, etal. Gender
differences in social network size and satisfaction
in adults in their 70s. J Health Psychol 2010; 15:
671679.
16. Stamp KD, Dunbar SB, Clark PC, et al. Family partner inter-
vention influences self-care confidence and treatment self-
regulation in patients with heart failure. Eur J Cardiovasc
Nurs 2016; 15: 317327.
17. Doherty LC, Fitzsimons D and McIlfatrick SJ. Carers
needs in advanced heart failure: A systematic narrative
review. Eur J Cardiovasc Nurs 2016; 15(4): 203212.

Downloaded from cnu.sagepub.com by guest on October 10, 2016