Inadequate Communication Exacerbates the Support Needs of Current and Bereaved Caregivers in Advanced Heart Failure and Impedes Shared Decision-making

The Journal of Cardiovascular Nursing
Donna FitzsimonsSonja McIlfatrick

Abstract

Clinicians face considerable challenges in identifying patients with advanced heart failure who experience significant symptom burden at the end of life. Often, these patients are cared for in the community by a loved one who has limited access to support from specialist services, including palliative care. The aims of this study were to explore caregivers' experience when caring for a loved one with advanced heart failure at the end of life and to identify any unmet psychosocial needs. This article reports findings of a qualitative study, using semistructured, one-to-one interviews with current and bereaved caregivers, who participated in a larger mixed-methods study. Interviews were conducted by a trained researcher, digitally recorded, transcribed verbatim, and imported to NVivo 11 for data management and coding. Data were analyzed using thematic analysis and an inductive approach. The 30 interviews included 20 current caregivers and 10 bereaved caregivers. The central feature of the caregivers' experience was identified as being "a physical and emotional rollercoaster." There were 3 main themes identified: poor communication, living with uncertainty, and lack of service provision. These themes were supported by 6 subthemes:...Continue Reading

References

Sep 18, 2007·International Journal for Quality in Health Care : Journal of the International Society for Quality in Health Care·Allison TongJonathan Craig
Sep 8, 2009·Journal of Pain and Symptom Management·Joy R GoebelKarl A Lorenz
Mar 21, 2012·European Journal of Heart Failure·John J V McMurrayHenry Krum
Dec 22, 2012·Heart & Lung : the Journal of Critical Care·Maureen MetzgerRobert Gramling
Apr 20, 2013·Current Cardiology Reviews·K Guha, T McDonagh
Apr 26, 2013·Circulation. Heart Failure·Paul A HeidenreichUNKNOWN Stroke Council
Sep 6, 2013·BMC Health Services Research·Patricia M DavidsonDavid C Currow
Jan 9, 2014·European Journal of Cardiovascular Nursing : Journal of the Working Group on Cardiovascular Nursing of the European Society of Cardiology·Harleah G BuckHeather M Arthur
Mar 22, 2015·Chronic Illness·Jennifer WinghamUNKNOWN REACH-HF research investigators
Apr 10, 2015·Circulation. Heart Failure·Corrine Y JurgensUNKNOWN American Heart Association Council on Quality of Care and Outcomes Research and the Heart Failure Society of America
Apr 30, 2015·European Journal of Cardiovascular Nursing : Journal of the Working Group on Cardiovascular Nursing of the European Society of Cardiology·Leanne C DohertySonja J McIlfatrick
May 9, 2015·Journal of Cardiac Failure·James C FangUNKNOWN Heart Failure Society of America Guidelines Committee
Aug 18, 2016·Journal of Palliative Medicine·Adam E SingerKarl A Lorenz
Sep 13, 2016·The Journal of Cardiovascular Nursing·Julie T BidwellChristopher S Lee
Jan 27, 2017·Circulation·Emelia J BenjaminUNKNOWN American Heart Association Statistics Committee and Stroke Statistics Subcommittee

❮ Previous
Next ❯

Citations

Dec 17, 2019·European Journal of Cardiovascular Nursing : Journal of the Working Group on Cardiovascular Nursing of the European Society of Cardiology·Tracey McConnellJoanne Reid
May 1, 2020·Circulation·Lisa KitkoUNKNOWN American Heart Association Council on Cardiovascular and Stroke Nursing; Council on Quality of Care and Outcomes Research; C
Oct 21, 2020·Journal of Advanced Nursing·Danique W Bos-van den HoekH Roeline Pasman
Jan 11, 2022·Journal of Palliative Medicine·Rodica Sorina PopDaniela Mosoiu

❮ Previous
Next ❯

Related Concepts

Trending Feeds

COVID-19

Coronaviruses encompass a large family of viruses that cause the common cold as well as more serious diseases, such as the ongoing outbreak of coronavirus disease 2019 (COVID-19; formally known as 2019-nCoV). Coronaviruses can spread from animals to humans; symptoms include fever, cough, shortness of breath, and breathing difficulties; in more severe cases, infection can lead to death. This feed covers recent research on COVID-19.

Blastomycosis

Blastomycosis fungal infections spread through inhaling Blastomyces dermatitidis spores. Discover the latest research on blastomycosis fungal infections here.

Nuclear Pore Complex in ALS/FTD

Alterations in nucleocytoplasmic transport, controlled by the nuclear pore complex, may be involved in the pathomechanism underlying multiple neurodegenerative diseases including Amyotrophic Lateral Sclerosis and Frontotemporal Dementia. Here is the latest research on the nuclear pore complex in ALS and FTD.

Applications of Molecular Barcoding

The concept of molecular barcoding is that each original DNA or RNA molecule is attached to a unique sequence barcode. Sequence reads having different barcodes represent different original molecules, while sequence reads having the same barcode are results of PCR duplication from one original molecule. Discover the latest research on molecular barcoding here.

Chronic Fatigue Syndrome

Chronic fatigue syndrome is a disease characterized by unexplained disabling fatigue; the pathology of which is incompletely understood. Discover the latest research on chronic fatigue syndrome here.

Evolution of Pluripotency

Pluripotency refers to the ability of a cell to develop into three primary germ cell layers of the embryo. This feed focuses on the mechanisms that underlie the evolution of pluripotency. Here is the latest research.

Position Effect Variegation

Position Effect Variagation occurs when a gene is inactivated due to its positioning near heterochromatic regions within a chromosome. Discover the latest research on Position Effect Variagation here.

STING Receptor Agonists

Stimulator of IFN genes (STING) are a group of transmembrane proteins that are involved in the induction of type I interferon that is important in the innate immune response. The stimulation of STING has been an active area of research in the treatment of cancer and infectious diseases. Here is the latest research on STING receptor agonists.

Microbicide

Microbicides are products that can be applied to vaginal or rectal mucosal surfaces with the goal of preventing, or at least significantly reducing, the transmission of sexually transmitted infections. Here is the latest research on microbicides.