Living with Severe Chronic Heart Failure in Palliative Advanced Home Care

Brännström, Margareta; Ekman, Inger; Norberg, Astrid; Boman, Kurt; Strandberg, Gunilla

doi:10.1016/j.ejcnurse.2006.01.006

Cited by 93 publications

(161 citation statements)

References 27 publications

(23 reference statements)

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“…Both being aware of the plan for home visits and being able to initiate visits were described as highly important for participation and feeling safe. This experience of safety is in concordance with previous findings in patients with HF receiving palliative home-care (Brännström et al 2006). Access to care also meant increased patient involvement among older patients in other care contexts (Bastiaens et al 2007).…”

Section: Patient Participation In Heart Failure Home-caresupporting

confidence: 90%

“…The fact that care was provided in the patient's home probably influenced participation, as revealed in this thesis. The importance of trustful relationships with health care professionals has been described by patients receiving home-care (Brännström et al 2006, Skär & Söderberg 2011, Holmberg et al 2012. Health care professionals have also described seeing themselves as a guest in the patient's home (Öhman & Söderberg 2004, Brännström et al 2005.…”

Section: Patient Participation In Heart Failure Home-carementioning

confidence: 99%

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Participation in heart failure home-care : Patients’ and partners’ perspectives

Näsström¹

2015

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Introduction: Patient participation is important for improving outcomes and respecting selfdetermination and legal aspects in care. Heart failure is a chronic condition that puts high demands on self-care and patient participation. Patients often need advanced care due to deterioration of their heart failure symptoms, and one option is to provide care as home-care. There is limited knowledge of how patients with heart failure and their partners view participation in home-care. Aim: The overall aim of this thesis was to describe different perspectives of participation in structured heart failure home-care among patients with heart failure and their partners. Methods: All patients in this thesis received structured heart failure home-care, according to a model aiming to facilitate care, where safety, participation, and gaining knowledge about the illness and treatment, are in focus. Study I had a prospective pre-post longitudinal design including 100 patients with heart failure receiving home-care. Data was collected by selfadministered questionnaires. Study II had a descriptive design. Nineteen patients receiving home-care were interviewed, and data was analysed using qualitative content analysis. Study III had a descriptive and explorative design. Data was collected by video-recorded observations of 19 home visits and analysed by qualitative content analysis. Study IV had a parallel convergent mixed-method design including 15 partners of patients receiving structured home-care. Data was collected by interviews and self-administered questionnaires. Datasets were first analysed separately and then together. Results: Better self-care behaviour was significantly associated with all measured aspects of participation. Participation by received information increased significantly during the 12-month follow-up (I). Patients’ descriptions of participation included communication between patients and health care professionals, access to care, active involvement in care, a trustful relation with health care professionals, and options for decision-making(II). Observed care encounters revealed that participation was made possible by; (i) interaction, including exchange of care-related information, care-related reasoning, and collaboration, (ii) an enabling approach, including the patient expresses own wishes and shows an active interest, and the nurse is committed and invites to a dialogue (III). Partners scored fairly positive for their participation in care and they performed different levels of caregiving tasks. Descriptions of participation included; adapting to the caring needs and illness trajectory, mastering caregiving demands, interacting with care providers, and gaining knowledge to comprehend the health situation. The mixed-method results showed both convergent results and expanded knowledge (IV). Conclusions: Structured heart failure home-care facilitated participation both for patients and their partners. Patient participation with regard to received information improved significantly after receiving home-care. As...

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Section: Patient Participation In Heart Failure Home-caresupporting

confidence: 90%

Section: Patient Participation In Heart Failure Home-carementioning

confidence: 99%

Participation in heart failure home-care : Patients’ and partners’ perspectives

Näsström¹

2015

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“…Fatigue is reported in both quantitative [1,2] and qualitative [3,4] studies to be one of the most common and distressing symptoms among people with chronic heart failure (CHF). In a group of elderly with CHF over 80% reported fatigue, shortness of breath, having difficulties to walk or climb stairs and having to rest during the day [2].…”

Section: Introductionmentioning

confidence: 99%

The Experience of Fatigue among Elderly Women with Chronic Heart Failure

Hägglund

Boman

Lundman

2008

European Journal of Cardiovascular Nursing

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Background: Fatigue is a common and distressing symptom in chronic heart failure (CHF). Most of the current methods for evaluating patients' symptoms fail to consider the meaning or importance that these symptoms have for the patient. Aim: To illuminate the lived experience of fatigue among elderly women with CHF. Method: Narrative interviews were conducted with 10 women with CHF, aged 73-89 years. Interviews were analysed with qualitative content analysis. Results: The findings are presented in two themes and five subthemes. The first theme, 'living with the loss of physical energy', was based on three subthemes describing the experience of fatigue: 'experiencing a substantial presence of feebleness and unfamiliar bodily sensations', 'experiencing unpredictable variations in physical ability', and 'needing help from others in daily life'. The second theme, 'striving for independence while being aware of deteriorating health', describes how the women managed their life situation; it was based on two subthemes: 'acknowledging one's remaining abilities', and 'being forced to adjust and struggle for independence'. Conclusions: Fatigue was experienced as loss of physical energy, leading to discrepancies between intention and capacity. The will to reduce dependency on others involved a daily struggle against fatigue.

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“…The theme of living with fear has been reported in several studies [46][47][48][49][50] on cardiovascular illnesses in general and on caregivers of VAD patients specifically. Using focus groups, Bosworth et al 46 found that anticipatory fear was a component of the affective responses associated with quality of life in patients with heart failure.…”

Section: Discussionmentioning

confidence: 99%