Literature DB >> 22107107

Giving voice to patients' and family caregivers' needs in chronic heart failure: implications for palliative care programs.

David B Bekelman1, Carolyn T Nowels, Jessica H Retrum, Larry A Allen, Simon Shakar, Evelyn Hutt, Theresa Heyborne, Deborah S Main, Jean S Kutner.   

Abstract

BACKGROUND: The American College of Cardiology Foundation/American Heart Association (ACC/AHA) Guidelines for the Management of Heart Failure recommend palliative care in the context of Stage D HF or at the end of life. Previous studies related to heart failure (HF) palliative care provide useful information about patients' experiences, but they do not provide concrete guidance for what palliative care needs are most important and how a palliative care program should be structured.
OBJECTIVES: Describe HF patients' and their family caregivers' major concerns and needs. Explore whether, how, and when palliative care would be useful to them. DESIGN AND PARTICIPANTS: Qualitative study using in-depth interviews of 33 adult outpatients with symptomatic HF identified using purposive sampling and 20 of their family caregivers. APPROACH: Interviews were transcribed verbatim and analyzed using the constant comparative method. KEY
RESULTS: Overall, patients and caregivers desired early support adjusting to the limitations and future course of illness, relief of a number of diverse symptoms, and the involvement of family caregivers using a team approach. A diverse group of participants desired these elements of palliative care early in illness, concurrent with their disease-specific care, coordinated by a provider who understood their heart condition and knew them well. Some diverging needs and preferences were found based on health status and age.
CONCLUSIONS: HF patients and their family caregivers supported early integration of palliative care services, particularly psychosocial support and symptom control, using a collaborative team approach. Future research should test the feasibility and effectiveness of integrating such a program into routine HF care.

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Mesh:

Year:  2011        PMID: 22107107      PMCID: PMC3532000          DOI: 10.1089/jpm.2011.0179

Source DB:  PubMed          Journal:  J Palliat Med        ISSN: 1557-7740            Impact factor:   2.947


  36 in total

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Review 3.  Daily symptom burden in end-stage chronic organ failure: a systematic review.

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4.  More 'malignant' than cancer? Five-year survival following a first admission for heart failure.

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Review 5.  Integrating palliative care into heart failure care.

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6.  Making sure services deliver for people with advanced heart failure: a longitudinal qualitative study of patients, family carers, and health professionals.

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8.  Health status identifies heart failure outpatients at risk for hospitalization or death.

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10.  Modelling services to meet the palliative care needs of chronic heart failure patients and their families: current practice in the UK.

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3.  An Intervention to Enhance Goals-of-Care Communication Between Heart Failure Patients and Heart Failure Providers.

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7.  Feasibility and acceptability of a collaborative care intervention to improve symptoms and quality of life in chronic heart failure: mixed methods pilot trial.

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8.  Does heart failure-specific health status identify patients with bothersome symptoms, depression, anxiety, and/or poorer spiritual well-being?

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