CNU0010.1177/1474515116653536European Journal of Cardiovascular NursingLuttik et al.

Editorial CARDIOLOGY ®

European Journal of Cardiovascular Nursing

Changing needs of heart failure patients
2016, Vol. 15(5) 298­–300
© The European Society of Cardiology 2016
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and their families during the illness sagepub.co.uk/journalsPermissions.nav
DOI: 10.1177/1474515116653536

trajectory: a challenge for health care cnu.sagepub.com

Marie Louise Luttik1, Tiny Jaarsma2 and Anna Strömberg3
Date received: 16 March 2016; accepted: 16 May 2016

Care for patients with heart failure is generally provided in patients’ needs in the transition towards the palliative phase
the continuum from prevention to diagnosis, treatment, care of heart failure.1,10,11 There is a general call for awareness of
towards end of life,1 with each patient having an own, the broader needs of patients and their families beyond
unique journey in living with heart failure within his or her those specifically linked to the heart failure state.12 During
individual social context. Current guidelines emphasize the the disease trajectory, different types of family support may
importance of the patients’ own responsibility, self-care and be in focus. For example, in the first phase of diagnosis and
self-management.2 To be able to take this responsibility and optimization of the medical regimen, family support might
learn to perform self-care, patients need education and sup- be focused on coping with a new diagnosis and its conse-
port from healthcare professionals. However, in their day to quences for future family plans. At the same time practical
day lives many heart failure patients depend on the support help from a caregiver might be needed to change diet habits
of their families or social network. Family support is posi- or to learn to organize a complex medication schedule. In
tively related to patient outcomes such as self-care, adher- the longer run, the need for motivational support might be
ence, mortality and health-related quality of life among more relevant, for example to motivate the patient with
patients with heart failure.3-6 Families are often motivated to heart failure to adhere to life-style changes. Additionally
support their relatives; however, providing care can also be practical support, such as support to visit the clinic, might
burdensome and cause emotional distress.7,8 also be needed. In another stage emotional support to deal
Family members, close relatives and caregivers there- with the loss of independence and social isolation might be
fore should be included in education and psychosocial sup- more in focus. In this changing trajectory of support needs,
port needs to be provided to both patients and their families families themselves might also be in need of different kinds
and caregivers.2 At first sight this seems a straightforward of external support or resources and this should be recog-
message and most nurses agree that family members nized by the health care provider.
should be invited to attend clinics, to be informed and to be
allowed to participate in care. However, formal family
Changes in the patient’s family and
assessments and active family engagement still seem to be
scarce in clinical practice.9 social network
The course of heart failure as well as the composition of While the patient’s trajectory progresses, relationships
families or social networks and the quality of the relation- within the family or social network of the patient are also
ships within these families or social networks are highly
subject to change over time, causing a complex challenge 1Hanze University of Applied Sciences, Research Group Nursing
to everyone involved in the care for heart failure patients. Diagnostics, The Netherlands
2Department of Social and Welfare Studies, Faculty of Health Sciences,

Linköping University, Sweden
Changes in patients’ health and care 3Division of Nursing Science, Department of Medicine and Health

needs during the disease trajectory Sciences, Linköping University, Sweden

Corresponding author:
In general, the severity of heart failure progresses over
Marie Louise Luttik, Hanze University of Applied Sciences, Research
time and therefore the caregiving demands on families are Group Nursing Diagnostics, Eyssoniusplein 18, Groningen 9714CE, The
often expected to change and intensify over time. There Netherlands.
is a growing number of descriptive studies addressing Email: m.l.a.luttik@pl.hanze.nl

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17 In order to be able to provide effec- and self-care in heart failure. 2. J Fam Psychol 2004. develop sensory impairments however. Beyond the ship intervention. with careful awareness of the health and health and have fewer support people to turn to. his Downloaded from cnu. Stoltz P. families in family structures and family functioning and skills may also experience changing needs for support. and death. seem to be highly necessary. In patient care. with heart failure and their families are mainly executed 4. Luttik ML and Jaarsma T. mainly the chronic 603–614. Moser DK. Tapp and Moules9 describe that nurses view the family 9. Scand J Caring Sci 2004. et al. Rohrbaugh MJ.13 Families generally experience cal practice. At the graduate education. J Card Fail 2008. of Cardiology. we would advocate a family-oriented Adults’ social networks in general decline in size with approach for patients with heart failure and their families advancing age. in the midst of things. Periodically monitoring the patient’s social network situation. educators and researchers to include members or other caregivers in the network may become family members as partners in the patients’ care teams. carers who care for an elderly person at home – a sys- tematic literature review.15 Family encourage clinicians. Predictors of medi- using cross-sectional designs. especially in basic. Agren S. Support for family studied. and caregivers is important for patients’ support. Wu JR. 439–445. Recommendations for education and 8. under- sis and patients’ treatment plan in the first phase. diseases.15 Providing care care needs of these family members. Tapp DM and Moules NJ. However. Lennie TA. 26: tive support to patients and their families. support should be same time. 18: 111–119. may at some point become too burdensome and sometimes impossible. 1. formal family assessment and inten- ner relationships. Information training in family assessment and family involvement and education might be necessary to understand the diagno. Facilitating optimal adaptation of families standardized part of nursing care. 18: for patients with heart failure. or maybe in a later stage. Coyne JC. with changing roles and with changes in their own for its capacity to support the patient is advised to be a personal lives. Chung ML. We would ness. physically less capable. et al. several studies have been pub. standing of the changing needs of patients and their 6. physical and cognitive decline. are affected by the heart failure of the patient. 5. are affected following the diagnosis of tional family engagement were hardly observed in clini- a cardiovascular disease. Education within these families. 9: 254–262. with a majority of female cation adherence using a multidimensional adherence spouses included in these studies and with a focus on a model in patients with heart failure. especially part. During the disease trajectory.com by guest on October 10.sagepub. Udén G and Willman A. Do partners with practice chronic heart failure experience caregiver burden? Eur J Cardiovasc Nurs 2010. Medication adherence families is needed. ill. new ily.15 A comprehensive assessment of the structure References and quality of the family or social network is highly neces. Chung ML. Relationships. et al. Wu JR. Kheirbek RE.14. Shoham V.Luttik et al. families seems spontaneous and generally based on the sometimes causing physical and/or mental health problems health care provider’s individual experience. Evangelista L and Strömberg A. Gallagher R. Social support or palliative phase. Eur Heart J 2012. 299 subject to change over time. 3. colleagues16 describe positive effects of a family partner. Heart Lung how they may affect the amount and quality of support that 2012. et al. 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ESC Guidelines for the diagnosis and treatment of cifically addressing family relationships in patients with acute and chronic heart failure. J Palliat Med 2013: 16: 478–784. a better under. 33: heart failure and their caregivers. changes in the structure mediates the relationship between marital status and cardiac and functional quality of the social network of patients and event-free survival in patients with heart failure. J Cardiovasc Nurs 2011. Enlivening the rhetoric of as important in the care of patients with cardiovascular family nursing: “There. Furthermore. Task Force for the Diagnosis and Treatment of Acute Recommendations for future research and Chronic Heart failure 2012 of the European Society Within the last 15 years.9 This might indicate that today support of distress in the process of adaptation to the new situation. Current studies in patients 184–193. 2016 .

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