Changing needs of heart failure patients and their families during the illness trajectory: A challenge for health care

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 support 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 positively related to patient outcomes such as self-care, adherence, 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 therefore should be included in education and psychosocial support 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 relationships 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 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 consequences 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 recognized by the health care provider.

Changes in the patient’s family and social network

While the patient’s trajectory progresses, relationships within the family or social network of the patient are also subject to change over time. Relationships, especially partner 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 diagnosis 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 illness, 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 necessary and requires periodic monitoring over time.

Recommendations for future research

Within the last 15 years, several studies have been published evaluating psycho-educational interventions by specifically addressing family relationships in patients with heart failure and their caregivers. In this issue Stamp and colleagues ¹⁶ describe positive effects of a family partnership 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 effective support to patients and their families, a better understanding 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 Moules ⁹ describe that nurses view the family as important in the care of patients with cardiovascular diseases; however, formal family assessment and intentional family engagement were hardly observed in clinical practice. ⁹ This might indicate that today support of families seems spontaneous and generally based on the health care provider’s 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, undergraduate education. In patient care, support should be more tailored to the specific needs of the individual family. Periodically monitoring the patient’s 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.