Patients' and their family members' experiences of participation in care following an acute exacerbation in chronic obstructive pulmonary disease: a phenomenological-hermeneutic study

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Abstract

AIM AND OBJECTIVES: To explore the experiences of patients with chronic obstructive pulmonary disease (COPD) and their family members relating to both participation in care during hospitalization for an acute exacerbation in COPD, and to the subsequent day-to-day care at home.

BACKGROUND: When recovering from an exacerbation, the challenges associated with an unpredictable health condition dominate everyday life for patients and can involve their family members. Proper patient and family participation in care during discharge and follow-up can help patients to improve self-management. However, knowledge of the significance of patient and family participation for recovery and subsequent everyday life is still limited.

DESIGN: This study adopted a longitudinal design informed by ethnographic fieldwork principles.

METHODS: Participant observations and interviews with 15 patients and 12 family members were conducted on a Danish hospital ward and twice at the participants' homes. A phenomenological-hermeneutic approach inspired by Ricoeur's theory of interpretation guided the data analysis.

RESULTS: Participation in care was perceived as valuable, but could be associated with tensions and increased uncertainty. While patients mostly demonstrated a reactive approach to care, family members strived to be more proactive. In hospital, preparing for discharge included an effort to find a balance between powerlessness and influence during interactions with healthcare professionals. At home, managing further recovery and self-management were characterized by navigating between mutual pressure and consideration within the family.

CONCLUSION: Family members play an important role in ensuring that patients are seen, heard, and understood, but want to be acknowledged more by healthcare professionals. Appropriate interactions with healthcare professionals are crucial in order to support discharge and daily self-management. This article is protected by copyright. All rights reserved.

Original languageEnglish
JournalJournal of Clinical Nursing
Volume26
Issue number23-24
Pages (from-to)4877-4889
ISSN0962-1067
DOIs
Publication statusPublished - Dec 2017

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Chronic Obstructive Pulmonary Disease
Patient Participation
Delivery of Health Care
Hermeneutics
Uncertainty
Interviews
Health

Keywords

  • Chronic obstructive pulmonary disease (COPD)
  • outpatient care
  • Qualitative research
  • Multimorbidity
  • patients' perspective
  • professional–family relations
  • self-management
  • participation in care
  • family members' perspective
  • semistructured interview
  • participant observation
  • chronic obstructive pulmonary disease
  • family-centred care
  • Humans
  • Middle Aged
  • Family/psychology
  • Patient Discharge
  • Male
  • Home Nursing
  • Aged, 80 and over
  • Female
  • Pulmonary Disease, Chronic Obstructive/nursing
  • Hermeneutics
  • Professional-Family Relations
  • Disease Progression
  • Aged
  • Qualitative Research
  • Longitudinal Studies

Cite this

@article{d64509c9b0834e278dadee2c555ba1f3,
title = "Patients' and their family members' experiences of participation in care following an acute exacerbation in chronic obstructive pulmonary disease: a phenomenological-hermeneutic study",
abstract = "AIM AND OBJECTIVES: To explore the experiences of patients with chronic obstructive pulmonary disease (COPD) and their family members relating to both participation in care during hospitalization for an acute exacerbation in COPD, and to the subsequent day-to-day care at home.BACKGROUND: When recovering from an exacerbation, the challenges associated with an unpredictable health condition dominate everyday life for patients and can involve their family members. Proper patient and family participation in care during discharge and follow-up can help patients to improve self-management. However, knowledge of the significance of patient and family participation for recovery and subsequent everyday life is still limited.DESIGN: This study adopted a longitudinal design informed by ethnographic fieldwork principles.METHODS: Participant observations and interviews with 15 patients and 12 family members were conducted on a Danish hospital ward and twice at the participants' homes. A phenomenological-hermeneutic approach inspired by Ricoeur's theory of interpretation guided the data analysis.RESULTS: Participation in care was perceived as valuable, but could be associated with tensions and increased uncertainty. While patients mostly demonstrated a reactive approach to care, family members strived to be more proactive. In hospital, preparing for discharge included an effort to find a balance between powerlessness and influence during interactions with healthcare professionals. At home, managing further recovery and self-management were characterized by navigating between mutual pressure and consideration within the family.CONCLUSION: Family members play an important role in ensuring that patients are seen, heard, and understood, but want to be acknowledged more by healthcare professionals. Appropriate interactions with healthcare professionals are crucial in order to support discharge and daily self-management. This article is protected by copyright. All rights reserved.",
keywords = "Chronic obstructive pulmonary disease (COPD), outpatient care, Qualitative research, Multimorbidity, patients' perspective, professional–family relations, self-management, participation in care, family members' perspective, semistructured interview, participant observation, chronic obstructive pulmonary disease, family-centred care, Humans, Middle Aged, Family/psychology, Patient Discharge, Male, Home Nursing, Aged, 80 and over, Female, Pulmonary Disease, Chronic Obstructive/nursing, Hermeneutics, Professional-Family Relations, Disease Progression, Aged, Qualitative Research, Longitudinal Studies",
author = "Andersen, {Ingrid Charlotte} and Thomsen, {Thora Grothe} and Poul Bruun and Uffe Bodtger and Lise Hounsgaard",
note = "This article is protected by copyright. All rights reserved.",
year = "2017",
month = "12",
doi = "10.1111/jocn.13963",
language = "English",
volume = "26",
pages = "4877--4889",
journal = "Journal of Clinical Nursing",
issn = "0962-1067",
publisher = "Wiley-Blackwell",
number = "23-24",

}

TY - JOUR

T1 - Patients' and their family members' experiences of participation in care following an acute exacerbation in chronic obstructive pulmonary disease

T2 - a phenomenological-hermeneutic study

AU - Andersen, Ingrid Charlotte

AU - Thomsen, Thora Grothe

AU - Bruun, Poul

AU - Bodtger, Uffe

AU - Hounsgaard, Lise

N1 - This article is protected by copyright. All rights reserved.

PY - 2017/12

Y1 - 2017/12

N2 - AIM AND OBJECTIVES: To explore the experiences of patients with chronic obstructive pulmonary disease (COPD) and their family members relating to both participation in care during hospitalization for an acute exacerbation in COPD, and to the subsequent day-to-day care at home.BACKGROUND: When recovering from an exacerbation, the challenges associated with an unpredictable health condition dominate everyday life for patients and can involve their family members. Proper patient and family participation in care during discharge and follow-up can help patients to improve self-management. However, knowledge of the significance of patient and family participation for recovery and subsequent everyday life is still limited.DESIGN: This study adopted a longitudinal design informed by ethnographic fieldwork principles.METHODS: Participant observations and interviews with 15 patients and 12 family members were conducted on a Danish hospital ward and twice at the participants' homes. A phenomenological-hermeneutic approach inspired by Ricoeur's theory of interpretation guided the data analysis.RESULTS: Participation in care was perceived as valuable, but could be associated with tensions and increased uncertainty. While patients mostly demonstrated a reactive approach to care, family members strived to be more proactive. In hospital, preparing for discharge included an effort to find a balance between powerlessness and influence during interactions with healthcare professionals. At home, managing further recovery and self-management were characterized by navigating between mutual pressure and consideration within the family.CONCLUSION: Family members play an important role in ensuring that patients are seen, heard, and understood, but want to be acknowledged more by healthcare professionals. Appropriate interactions with healthcare professionals are crucial in order to support discharge and daily self-management. This article is protected by copyright. All rights reserved.

AB - AIM AND OBJECTIVES: To explore the experiences of patients with chronic obstructive pulmonary disease (COPD) and their family members relating to both participation in care during hospitalization for an acute exacerbation in COPD, and to the subsequent day-to-day care at home.BACKGROUND: When recovering from an exacerbation, the challenges associated with an unpredictable health condition dominate everyday life for patients and can involve their family members. Proper patient and family participation in care during discharge and follow-up can help patients to improve self-management. However, knowledge of the significance of patient and family participation for recovery and subsequent everyday life is still limited.DESIGN: This study adopted a longitudinal design informed by ethnographic fieldwork principles.METHODS: Participant observations and interviews with 15 patients and 12 family members were conducted on a Danish hospital ward and twice at the participants' homes. A phenomenological-hermeneutic approach inspired by Ricoeur's theory of interpretation guided the data analysis.RESULTS: Participation in care was perceived as valuable, but could be associated with tensions and increased uncertainty. While patients mostly demonstrated a reactive approach to care, family members strived to be more proactive. In hospital, preparing for discharge included an effort to find a balance between powerlessness and influence during interactions with healthcare professionals. At home, managing further recovery and self-management were characterized by navigating between mutual pressure and consideration within the family.CONCLUSION: Family members play an important role in ensuring that patients are seen, heard, and understood, but want to be acknowledged more by healthcare professionals. Appropriate interactions with healthcare professionals are crucial in order to support discharge and daily self-management. This article is protected by copyright. All rights reserved.

KW - Chronic obstructive pulmonary disease (COPD)

KW - outpatient care

KW - Qualitative research

KW - Multimorbidity

KW - patients' perspective

KW - professional–family relations

KW - self-management

KW - participation in care

KW - family members' perspective

KW - semistructured interview

KW - participant observation

KW - chronic obstructive pulmonary disease

KW - family-centred care

KW - Humans

KW - Middle Aged

KW - Family/psychology

KW - Patient Discharge

KW - Male

KW - Home Nursing

KW - Aged, 80 and over

KW - Female

KW - Pulmonary Disease, Chronic Obstructive/nursing

KW - Hermeneutics

KW - Professional-Family Relations

KW - Disease Progression

KW - Aged

KW - Qualitative Research

KW - Longitudinal Studies

U2 - 10.1111/jocn.13963

DO - 10.1111/jocn.13963

M3 - Journal article

C2 - 28722760

VL - 26

SP - 4877

EP - 4889

JO - Journal of Clinical Nursing

JF - Journal of Clinical Nursing

SN - 0962-1067

IS - 23-24

ER -