Earlier Integration of Palliative Care: Examining the Palliative Care Needs and Quality of Life of Carers for People Living with Advanced Heart Failure

Sonja McIlfatrick, Donna Fitzsimons, LC Breslin

Research output: Book/ReportBook

Abstract

Background: Evidence suggests that end-of-life care in heart failure is poor, characterized by high levels of symptoms, inadequate support and poor quality of life. Family carers play a crucial role in supporting advanced HF patients yet there is a lack of knowledge on the needs and experiences of carers for this group of patients.Aim: To examine the palliative care needs, quality of life, perceived burden and level of preparedness of carers of people living with advanced heart failure.Methods: A sequential confirmatory mixed methods approach comprising two phases.Phase 1: Postal survey with carers identified via a database of patients living with advanced heart failure (NYHA Classification III-IV, ejection fraction <40% and ⩾ 1 unscheduled hospital admission in the previous 12 months) across Ireland. Data included measures of depression, anxiety, QoL, perceived social support and illness beliefs, caregiver burden, needs assessment and preparedness for caregiving. Inclusion criteria: carers identified by the patient as the main person who provides care.Phase 2: semi structured face to face interviews with carers (n=20). Thematic analysis of verbatim transcripts was used to identify emergent themes. Descriptive and inferential data analysis using SPSS was undertaken.Results: 82 carer responses was obtained (response rate 47%). Nearly one third of the carers experienced moderate to severe levels of depression and anxiety and their quality of life was impacted by their caregiving role. They spent a considerable time on caregiving tasks with over 60% spending over 50 hours per week. Themes from the qualitative interviews indicated that the carers considered that their life is on hold; expressing feelings of isolation and frustration at a perceived lack of support.Conclusions: Carer’s needs are variable depending on the patients’ medical stability. A holistic approach is needed to support these carers.Funding: Health Research Board & AIIHPC.
LanguageEnglish
Place of PublicationPalliative Medicine
Number of pages58
DOIs
Publication statusE-pub ahead of print - 11 May 2016

Fingerprint

Palliative Care
Caregivers
Heart Failure
Quality of Life
Anxiety
Interviews
Depression
Frustration
Terminal Care
Needs Assessment
Ireland
Social Support
Emotions
Databases

Keywords

  • Palliative care
  • Heart failure
  • Caregivers

Cite this

@book{d785d09381574566913742f18e16f793,
title = "Earlier Integration of Palliative Care: Examining the Palliative Care Needs and Quality of Life of Carers for People Living with Advanced Heart Failure",
abstract = "Background: Evidence suggests that end-of-life care in heart failure is poor, characterized by high levels of symptoms, inadequate support and poor quality of life. Family carers play a crucial role in supporting advanced HF patients yet there is a lack of knowledge on the needs and experiences of carers for this group of patients.Aim: To examine the palliative care needs, quality of life, perceived burden and level of preparedness of carers of people living with advanced heart failure.Methods: A sequential confirmatory mixed methods approach comprising two phases.Phase 1: Postal survey with carers identified via a database of patients living with advanced heart failure (NYHA Classification III-IV, ejection fraction <40{\%} and ⩾ 1 unscheduled hospital admission in the previous 12 months) across Ireland. Data included measures of depression, anxiety, QoL, perceived social support and illness beliefs, caregiver burden, needs assessment and preparedness for caregiving. Inclusion criteria: carers identified by the patient as the main person who provides care.Phase 2: semi structured face to face interviews with carers (n=20). Thematic analysis of verbatim transcripts was used to identify emergent themes. Descriptive and inferential data analysis using SPSS was undertaken.Results: 82 carer responses was obtained (response rate 47{\%}). Nearly one third of the carers experienced moderate to severe levels of depression and anxiety and their quality of life was impacted by their caregiving role. They spent a considerable time on caregiving tasks with over 60{\%} spending over 50 hours per week. Themes from the qualitative interviews indicated that the carers considered that their life is on hold; expressing feelings of isolation and frustration at a perceived lack of support.Conclusions: Carer’s needs are variable depending on the patients’ medical stability. A holistic approach is needed to support these carers.Funding: Health Research Board & AIIHPC.",
keywords = "Palliative care, Heart failure, Caregivers",
author = "Sonja McIlfatrick and Donna Fitzsimons and LC Breslin",
year = "2016",
month = "5",
day = "11",
doi = "10.1177/0269216316646056",
language = "English",
isbn = "1177/0269216316646056",

}

TY - BOOK

T1 - Earlier Integration of Palliative Care: Examining the Palliative Care Needs and Quality of Life of Carers for People Living with Advanced Heart Failure

AU - McIlfatrick, Sonja

AU - Fitzsimons, Donna

AU - Breslin, LC

PY - 2016/5/11

Y1 - 2016/5/11

N2 - Background: Evidence suggests that end-of-life care in heart failure is poor, characterized by high levels of symptoms, inadequate support and poor quality of life. Family carers play a crucial role in supporting advanced HF patients yet there is a lack of knowledge on the needs and experiences of carers for this group of patients.Aim: To examine the palliative care needs, quality of life, perceived burden and level of preparedness of carers of people living with advanced heart failure.Methods: A sequential confirmatory mixed methods approach comprising two phases.Phase 1: Postal survey with carers identified via a database of patients living with advanced heart failure (NYHA Classification III-IV, ejection fraction <40% and ⩾ 1 unscheduled hospital admission in the previous 12 months) across Ireland. Data included measures of depression, anxiety, QoL, perceived social support and illness beliefs, caregiver burden, needs assessment and preparedness for caregiving. Inclusion criteria: carers identified by the patient as the main person who provides care.Phase 2: semi structured face to face interviews with carers (n=20). Thematic analysis of verbatim transcripts was used to identify emergent themes. Descriptive and inferential data analysis using SPSS was undertaken.Results: 82 carer responses was obtained (response rate 47%). Nearly one third of the carers experienced moderate to severe levels of depression and anxiety and their quality of life was impacted by their caregiving role. They spent a considerable time on caregiving tasks with over 60% spending over 50 hours per week. Themes from the qualitative interviews indicated that the carers considered that their life is on hold; expressing feelings of isolation and frustration at a perceived lack of support.Conclusions: Carer’s needs are variable depending on the patients’ medical stability. A holistic approach is needed to support these carers.Funding: Health Research Board & AIIHPC.

AB - Background: Evidence suggests that end-of-life care in heart failure is poor, characterized by high levels of symptoms, inadequate support and poor quality of life. Family carers play a crucial role in supporting advanced HF patients yet there is a lack of knowledge on the needs and experiences of carers for this group of patients.Aim: To examine the palliative care needs, quality of life, perceived burden and level of preparedness of carers of people living with advanced heart failure.Methods: A sequential confirmatory mixed methods approach comprising two phases.Phase 1: Postal survey with carers identified via a database of patients living with advanced heart failure (NYHA Classification III-IV, ejection fraction <40% and ⩾ 1 unscheduled hospital admission in the previous 12 months) across Ireland. Data included measures of depression, anxiety, QoL, perceived social support and illness beliefs, caregiver burden, needs assessment and preparedness for caregiving. Inclusion criteria: carers identified by the patient as the main person who provides care.Phase 2: semi structured face to face interviews with carers (n=20). Thematic analysis of verbatim transcripts was used to identify emergent themes. Descriptive and inferential data analysis using SPSS was undertaken.Results: 82 carer responses was obtained (response rate 47%). Nearly one third of the carers experienced moderate to severe levels of depression and anxiety and their quality of life was impacted by their caregiving role. They spent a considerable time on caregiving tasks with over 60% spending over 50 hours per week. Themes from the qualitative interviews indicated that the carers considered that their life is on hold; expressing feelings of isolation and frustration at a perceived lack of support.Conclusions: Carer’s needs are variable depending on the patients’ medical stability. A holistic approach is needed to support these carers.Funding: Health Research Board & AIIHPC.

KW - Palliative care

KW - Heart failure

KW - Caregivers

U2 - 10.1177/0269216316646056

DO - 10.1177/0269216316646056

M3 - Book

SN - 1177/0269216316646056

BT - Earlier Integration of Palliative Care: Examining the Palliative Care Needs and Quality of Life of Carers for People Living with Advanced Heart Failure

CY - Palliative Medicine

ER -