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

Donna Fitzsimons, Leanne Doherty, Mary Murphy, lana Dixon, Patrick Donnelly, Kenneth McDonald, Sonja J McIlfatrick

Research output: Contribution to journalArticle

Abstract

Background: 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.
Aim: 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.
Methods: 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.
Results: 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: inadequate understanding of palliative care, a 24/7 physical burden, emotional burden, inability to plan, no care continuity, and dying lonely and unsupported.
Conclusions: Caregivers in advanced heart failure need clearer communication regarding diagnosis and prognosis of their loved one's condition to help with the uncertainty of their situation. Improved identification of palliative care needs and more coordinated service provision are urgently required to address their physical and emotional challenges from diagnosis through bereavement.
LanguageEnglish
Number of pages9
JournalJournal of Cardiovascular Nursing
Volume00
Issue number0
Early online date28 Aug 2018
DOIs
Publication statusE-pub ahead of print - 28 Aug 2018

Fingerprint

Caregivers
Decision Making
Heart Failure
Communication
Palliative Care
Interviews
Uncertainty
Bereavement
Continuity of Patient Care
Research Personnel

Keywords

  • caregivers
  • heart failure
  • nursing
  • palliative care
  • qualitative research

Cite this

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title = "Inadequate Communication Exacerbates the Support Needs of Current and Bereaved Caregivers in Advanced Heart Failure and Impedes Shared Decision-making",
abstract = "Background: 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.Aim: 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.Methods: 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.Results: 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: inadequate understanding of palliative care, a 24/7 physical burden, emotional burden, inability to plan, no care continuity, and dying lonely and unsupported.Conclusions: Caregivers in advanced heart failure need clearer communication regarding diagnosis and prognosis of their loved one's condition to help with the uncertainty of their situation. Improved identification of palliative care needs and more coordinated service provision are urgently required to address their physical and emotional challenges from diagnosis through bereavement.",
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Inadequate Communication Exacerbates the Support Needs of Current and Bereaved Caregivers in Advanced Heart Failure and Impedes Shared Decision-making. / Fitzsimons, Donna; Doherty, Leanne; Murphy, Mary; Dixon, lana; Donnelly, Patrick; McDonald, Kenneth; McIlfatrick, Sonja J.

In: Journal of Cardiovascular Nursing, Vol. 00, No. 0, 28.08.2018.

Research output: Contribution to journalArticle

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AU - Doherty, Leanne

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AU - Dixon, lana

AU - Donnelly, Patrick

AU - McDonald, Kenneth

AU - McIlfatrick, Sonja J

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Y1 - 2018/8/28

N2 - Background: 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.Aim: 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.Methods: 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.Results: 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: inadequate understanding of palliative care, a 24/7 physical burden, emotional burden, inability to plan, no care continuity, and dying lonely and unsupported.Conclusions: Caregivers in advanced heart failure need clearer communication regarding diagnosis and prognosis of their loved one's condition to help with the uncertainty of their situation. Improved identification of palliative care needs and more coordinated service provision are urgently required to address their physical and emotional challenges from diagnosis through bereavement.

AB - Background: 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.Aim: 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.Methods: 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.Results: 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: inadequate understanding of palliative care, a 24/7 physical burden, emotional burden, inability to plan, no care continuity, and dying lonely and unsupported.Conclusions: Caregivers in advanced heart failure need clearer communication regarding diagnosis and prognosis of their loved one's condition to help with the uncertainty of their situation. Improved identification of palliative care needs and more coordinated service provision are urgently required to address their physical and emotional challenges from diagnosis through bereavement.

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