Interventions to Support Informal Caregivers of People with Chronic Obstructive Pulmonary Disease: A Systematic Literature Review

2.

Marques

A

,

Goldstein

R

.

Living with chronic lung disease: the experiences and needs of patients and caregivers

. In:

Donner

C

,

Ambrosino

N

,

Goldstein

R

, editors.

Pulmonary rehabilitation

.

London

:

CRC Press, Taylor and Francis Group

;

2020

.

https://doi.org/10.1186/s12913-015-0759-6

3.

Family Caregiver Alliance

.

National center on caregiving: definitions

. Available from: https://www.caregiver.org/definitions-0.

4.

Peña-Longobardo

LM

,

Oliva-Moreno

J

,

Hidalgo-Vega

Á

,

Miravitlles

M

.

Economic valuation and determinants of informal care to disabled people with chronic obstructive pulmonary disease (COPD)

.

BMC Health Serv Res

.

2015 Mar 15

;

15

:

101

.

.

https://doi.org/10.1016/S0140-6736(20)31254-X

5.

Chan

EYY

,

Gobat

N

,

Kim

JH

,

Newnham

EA

,

Huang

Z

,

Hung

H

,

Informal home care providers: the forgotten health-care workers during the COVID-19 pandemic

.

Lancet

.

2020 Jun 27

;

395

(

10242

):

1957

–

9

.

.

https://doi.org/10.1186/1472-6963-13-191

6.

Macdonald

MT

,

Lang

A

,

Storch

J

,

Stevenson

L

,

Barber

T

,

Iaboni

K

,

Examining markers of safety in homecare using the international classification for patient safety

.

BMC Health Serv Res

.

2013

;

13

:

191

–

1

.

.

https://doi.org/10.1136/bmjopen-2018-028720

7.

Strang

S

,

Fährn

J

,

Strang

P

,

Ronstad

A

,

Danielsson

L

.

Support to informal caregivers of patients with severe chronic obstructive pulmonary disease: a qualitative study of caregivers’ and professionals’ experiences in Swedish hospitals

.

BMJ Open

.

2019 Aug 10

;

9

(

8

):

e028720

.

.

https://doi.org/10.1371/journal.pmed.1000097

8.

Moher

D

,

Liberati

A

,

Tetzlaff

J

,

Altman

DG

.

Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement

.

PLoS Med

.

2009 Jul 21

;

6

(

7

):

e1000097

.

.

https://doi.org/10.1002/14651858.CD007617.pub2

9.

Candy

B

,

Jones

L

,

Drake

R

,

Leurent

B

,

King

M

.

Interventions for supporting informal caregivers of patients in the terminal phase of a disease

.

Cochrane Database Syst Rev

.

2011 Jun 15

(

6

):

Cd007617

.

.

https://doi.org/10.2147/COPD.S107571

10.

Bryant

J

,

Mansfield

E

,

Boyes

AW

,

Waller

A

,

Sanson-Fisher

R

,

Regan

T

.

Involvement of informal caregivers in supporting patients with COPD: a review of intervention studies

.

Int J Chron Obstruct Pulmon Dis

.

2016

;

11

:

1587

–

96

.

.

https://doi.org/10.1111/hsc.12292

11.

Cruz

J

,

Marques

A

,

Figueiredo

D

.

Impacts of COPD on family carers and supportive interventions: a narrative review

.

Health Soc Care Community

.

2017 Jan

;

25

(

1

):

11

–

25

.

.

https://doi.org/10.1111/jan.14172

12.

Noonan

MC

,

Wingham

J

,

Dalal

HM

,

Taylor

RS

.

Involving caregivers in self-management interventions for patients with heart failure and chronic obstructive pulmonary disease. A systematic review and meta-analysis

.

J Adv Nurs

.

2019 Dec

;

75

(

12

):

3331

–

45

.

.

13.

Kmet

LM

,

Lee

RC

,

Cook

LS

.

Standard quality assessment criteria for evaluating primary research papers from a variety of fields

.

Alberta

:

Alberta Heritage Foundation for Medical Research

;

2004

.

https://doi.org/10.2340/16501977-2297

14.

Speyer

R

,

Denman

D

,

Wilkes-Gillan

S

,

Chen

YW

,

Bogaardt

H

,

Kim

JH

,

Effects of telehealth by allied health professionals and nurses in rural and remote areas: a systematic review and meta-analysis

.

J Rehabil Med

.

2018 Feb 28

;

50

(

3

):

225

–

35

.

.

https://doi.org/10.1183/16000617.0125-2019

15.

Lee

JYT

,

Tikellis

G

,

Corte

TJ

,

Goh

NS

,

Keir

GJ

,

Spencer

L

,

The supportive care needs of people living with pulmonary fibrosis and their caregivers: a systematic review

.

Eur Respir Rev

.

2020 Jun 30

;

29

(

156

):

29

.

.

https://doi.org/10.2307/2529310

16.

Landis

JR

,

Koch

GG

.

The measurement of observer agreement for categorical data

.

Biometrics

.

1977 Mar

;

33

(

1

):

159

–

74

.

.

https://doi.org/10.1111/j.1365-2648.2007.04569.x

17.

Elo

S

,

Kyngäs

H

.

The qualitative content analysis process

.

J Adv Nurs

.

2008 Apr

;

62

(

1

):

107

–

15

.

.

https://doi.org/10.1186/1471-2288-13-117

18.

Gale

NK

,

Heath

G

,

Cameron

E

,

Rashid

S

,

Redwood

S

.

Using the framework method for the analysis of qualitative data in multi-disciplinary health research

.

BMC Med Res Methodol

.

2013 Sep 18

;

13

:

117

.

.

19.

Ritchie

J

,

Lewis

J

.

Qualitative research practice: a guide for social science students and researchers

. 2nd ed.

SAGE Publications Ltd

;

2003

.

https://doi.org/10.1097/00129234-200209000-00002

20.

Egan

E

,

Clavarino

A

,

Burridge

L

,

Teuwen

M

,

White

E

.

A randomized control trial of nursing-based case management for patients with chronic obstructive pulmonary disease

.

Lippincotts Case Manag

.

2002 Sep–Oct

;

7

(

5

):

170

–

9

.

.

https://doi.org/10.1136/thorax.57.2.167

21.

Ojoo

JC

,

Moon

T

,

McGlone

S

,

Martin

K

,

Gardiner

ED

,

Greenstone

MA

,

Patients’ and carers’ preferences in two models of care for acute exacerbations of COPD: results of a randomised controlled trial

.

Thorax

.

2002 Feb

;

57

(

2

):

167

–

9

.

.

22.

Ip

SPS

,

Leung

YF

,

Choy

KL

.

Short-stay in-patient rehabilitation of elderly patients with chronic obstructive pulmonary disease: prospective study

.

Hong Kong Med J

.

2004

;

10

(

5

):

312

–

8

.

https://doi.org/10.1097/00008483-200511000-00012

23.

Boxall

AM

,

Barclay

L

,

Sayers

A

,

Caplan

GA

.

Managing chronic obstructive pulmonary disease in the community. A randomized controlled trial of home-based pulmonary rehabilitation for elderly housebound patients

.

J Cardiopulm Rehabil

.

2005 Nov-Dec

;

25

(

6

):

378

–

85

.

.

https://doi.org/10.1186/1472-684X-8-9

24.

Farquhar

MC

,

Higginson

IJ

,

Fagan

P

,

Booth

S

.

The feasibility of a single-blinded fast-track pragmatic randomised controlled trial of a complex intervention for breathlessness in advanced disease

.

BMC Palliat Care

.

2009

;

8

(

9

):

9

–

15

.

.

https://doi.org/10.1111/j.1365-2702.2010.03303.x

25.

Ingadottir

TS

,

Jonsdottir

H

.

Partnership-based nursing practice for people with chronic obstructive pulmonary disease and their families: influences on health-related quality of life and hospital admissions

.

J Clin Nurs

.

2010 Oct

;

19

(

19–20

):

2795

–

805

.

.

https://doi.org/10.1177/1049732311403498

26.

Jonsdottir

H

,

Ingadottir

TS

.

Health in partnership: family nursing practice for people with breathing difficulties

.

Qual Health Res

.

2011 Jul

;

21

(

7

):

927

–

35

.

.

27.

Abad-Corpa

E

,

Royo-Morales

T

,

Iniesta-Sánchez

J

,

Carrillo-Alcaraz

A

,

Rodríguez-Mondejar

JJ

,

Saez-Soto

ÁR

,

Evaluation of the effectiveness of hospital discharge planning and follow-up in the primary care of patients with chronic obstructive pulmonary disease

.

J Clin Nurs

.

2013

;

22

(

5–6

):

669

–

80

.

https://doi.org/10.1089/jpm.2012.0285

28.

Horton

R

,

Rocker

G

,

Dale

A

,

Young

J

,

Hernandez

P

,

Sinuff

T

.

Implementing a palliative care trial in advanced COPD: a feasibility assessment (The COPD IMPACT Study)

.

J Palliat Med

.

2013 Jan

;

16

(

1

):

67

–

73

.

.

https://doi.org/10.1016/j.jamda.2013.03.003

29.

Lainscak

M

,

Kadivec

S

,

Kosnik

M

,

Benedik

B

,

Bratkovic

M

,

Jakhel

T

,

Discharge coordinator intervention prevents hospitalizations in patients with COPD: a randomized controlled trial

.

J Am Med Dir Assoc

.

2013 Jun

;

14

(

6

):

450

.

.

https://doi.org/10.4104/pcrj.2013.00094

30.

Zakrisson

AB

,

Theander

K

,

Anderzén-Carlsson

A

.

The experience of a multidisciplinary programme of pulmonary rehabilitation in primary health care from the next of kin’s perspective: a qualitative study

.

Prim Care Respir J

.

2013 Dec

;

22

(

4

):

459

–

65

.

.

https://doi.org/10.1111/jan.12728

31.

Jonsdottir

H

,

Amundadottir

OR

,

Gudmundsson

G

,

Halldorsdottir

BS

,

Hrafnkelsson

B

,

Ingadottir

TS

,

Effectiveness of a partnership-based self-management programme for patients with mild and moderate chronic obstructive pulmonary disease: a pragmatic randomized controlled trial

.

J Adv Nurs

.

2015 Nov

;

71

(

11

):

2634

–

49

.

.

https://doi.org/10.3109/09638288.2014.964376

32.

Marques

A

,

Gabriel

R

,

Jácome

C

,

Cruz

J

,

Brooks

D

,

Figueiredo

D

.

Development of a family-based pulmonary rehabilitation programme: an exploratory study

.

Disabil Rehabil

.

2015

;

37

(

14–15

):

1340

–

6

.

.

https://doi.org/10.1378/chest.14-1488

33.

Marques

A

,

Jácome

C

,

Cruz

J

,

Gabriel

R

,

Brooks

D

,

Figueiredo

D

.

Family-based psychosocial support and education as part of pulmonary rehabilitation in COPD: a randomized controlled trial

.

Chest

.

2015 Mar

;

147

(

3

):

662

–

72

.

.

https://doi.org/10.4187/respcare.04624

34.

Figueiredo

D

,

Cruz

J

,

Jácome

C

,

Marques

A

.

Exploring the benefits to caregivers of a family-oriented pulmonary rehabilitation program

.

Respir Care

.

2016 Aug

;

61

(

8

):

1081

–

9

.

.

https://doi.org/10.1016/j.cct.2017.08.018

35.

Aboumatar

H

,

Naqibuddin

M

,

Chung

S

,

Adebowale

H

,

Bone

L

,

Brown

T

,

Better Respiratory Education and Treatment Help Empower (BREATHE) study: methodology and baseline characteristics of a randomized controlled trial testing a transitional care program to improve patient-centered care delivery among chronic obstructive pulmonary disease patients

.

Contemp Clin Trials

.

2017 Nov

;

62

:

159

–

67

.

.

https://doi.org/10.1001/jama.2019.11982

36.

Aboumatar

H

,

Naqibuddin

M

,

Chung

S

,

Chaudhry

H

,

Kim

SW

,

Saunders

J

,

Effect of a hospital-initiated program combining transitional care and long-term self-management support on outcomes of patients hospitalized with chronic obstructive pulmonary disease: a randomized clinical trial

.

JAMA

.

2019 Oct 8

;

322

(

14

):

1371

–

80

.

.

https://doi.org/10.1136/thoraxjnl-2018-211943

37.

Houben

CHM

,

Spruit

MA

,

Luyten

H

,

Pennings

HJ

,

van den Boogaart

VEM

,

Creemers

JPHM

,

Cluster-randomised trial of a nurse-led advance care planning session in patients with COPD and their loved ones

.

Thorax

.

2019 Apr

;

74

(

4

):

328

–

36

.

.

38.

Ildarabadi

EH

,

Hossinzadeh

N

,

Dameghani

S

,

Eidy

F

,

Rad

M

.

Comparison of face-to-face education of caregivers and hospitalized elderlies with copd and its impact on the elderlies’ self-care

.

Pneumon

.

2019

;

32

(

4

):

137

–

43

.

https://doi.org/10.1016/j.cct.2020.106023

39.

Aboumatar

H

,

Naqibuddin

M

,

Neiman

J

,

Saunders

J

,

Kim

S

,

Chaudhry

H

,

Methodology and baseline characteristics of a randomized controlled trial testing a health care professional and peer-support program for patients with chronic obstructive pulmonary disease: The BREATHE2 study

.

Contemp Clin Trials

.

2020 2020/07/01/

;

94

:

106023

.

.

https://doi.org/10.1177/1479972317719086

40.

Farquhar

M

.

Assessing carer needs in chronic obstructive pulmonary disease

.

Chron Respir Dis

.

2018 Feb

;

15

(

1

):

26

–

35

.

.

https://doi.org/10.1177/1403494811425712

41.

Gautun

H

,

Werner

A

,

Lurås

H

.

Care challenges for informal caregivers of chronically ill lung patients: results from a questionnaire survey

.

Scand J Public Health

.

2012 Feb

;

40

(

1

):

18

–

24

.

.

https://doi.org/10.1177/0269216317690994

42.

Dzingina

MD

,

Reilly

CC

,

Bausewein

C

,

Jolley

CJ

,

Moxham

J

,

McCrone

P

,

Variations in the cost of formal and informal health care for patients with advanced chronic disease and refractory breathlessness: a cross-sectional secondary analysis

.

Palliat Med

.

2017 Apr

;

31

(

4

):

369

–

77

.

.

https://doi.org/10.1136/bmjopen-2017-020927

43.

Noonan

MC

,

Wingham

J

,

Taylor

RS

.

“Who cares?” The experiences of caregivers of adults living with heart failure, chronic obstructive pulmonary disease and coronary artery disease: a mixed methods systematic review

.

BMJ Open

.

2018 Jul 11

;

8

(

7

):

e020927

.

.

44.

Siltanen

H

,

Jylhä

V

,

Holopainen

A

,

Paavilainen

E

.

Family members’ experiences and expectations of self-management counseling while caring for a person with chronic obstructive pulmonary disease: a systematic review of qualitative evidence

.

JBI Evidence Synthesis

.

2019

;

17

(

11

):

2214

–

47

.

https://doi.org/10.1093/geront/42.3.356

45.

Sörensen

S

,

Pinquart

M

,

Duberstein

P

.

How effective are interventions with caregivers? An updated meta-analysis

.

Gerontologist

.

2002 Jun

;

42

(

3

):

356

–

72

.

.

https://doi.org/10.3109/15412555.2016.1151488

46.

Mansfield

E

,

Bryant

J

,

Regan

T

,

Waller

A

,

Boyes

A

,

Sanson-Fisher

R

.

Burden and unmet needs of caregivers of chronic obstructive pulmonary disease patients: a systematic review of the volume and focus of research output

.

COPD

.

2016 Oct

;

13

(

5

):

662

–

7

.

.

https://doi.org/10.1111/j.1365-2702.2008.02556.x

47.

Caress

AL

,

Luker

KA

,

Chalmers

KI

,

Salmon

MP

.

A review of the information and support needs of family carers of patients with chronic obstructive pulmonary disease

.

J Clin Nurs

.

2009 Feb

;

18

(

4

):

479

–

91

.

.

https://doi.org/10.1183/16000617.00010114

48.

Nakken

N

,

Janssen

DJ

,

van den Bogaart

EH

,

Wouters

EF

,

Franssen

FM

,

Vercoulen

JH

,

Informal caregivers of patients with COPD: home sweet home?

Eur Respir Rev

.

2015 Sep

;

24

(

137

):

498

–

504

.

.

https://doi.org/10.1017/S1041610214000337

49.

Jácome

C

,

Figueiredo

D

,

Gabriel

R

,

Cruz

J

,

Marques

A

.

Predicting anxiety and depression among family carers of people with Chronic Obstructive Pulmonary Disease

.

Int Psychogeriatr

.

2014 Jul

;

26

(

7

):

1191

–

9

.

.

https://doi.org/10.2147/COPD.S118871

50.

Nakken

N

,

Janssen

DJ

,

van Vliet

M

,

de Vries

GJ

,

Clappers-Gielen

GA

,

Michels

AJ

,

Gender differences in partners of patients with COPD and their perceptions about the patients

.

Int J Chron Obstruct Pulmon Dis

.

2017

;

12

:

95

–

104

.

.

https://doi.org/10.1037/pag0000401

51.

Cheng

ST

,

Li

KK

,

Losada

A

,

Zhang

F

,

Au

A

,

Thompson

LW

,

The effectiveness of nonpharmacological interventions for informal dementia caregivers: an updated systematic review and meta-analysis

.

Psychol Aging

.

2020 Feb

;

35

(

1

):

55

–

77

.

.

https://doi.org/10.1111/jocn.13842

52.

Robinson

K

,

Lucas

E

,

van den Dolder

P

,

Halcomb

E

.

Living with chronic obstructive pulmonary disease: the stories of frequent attenders to the Emergency Department

.

J Clin Nurs

.

2018 Jan

;

27

(

1–2

):

48

–

56

.

.

https://doi.org/10.1097/SPC.0000000000000517

53.

Patel

S

,

Man

WD

,

Roberts

NJ

.

Informal carers and peer support in pulmonary rehabilitation: an underutilized resource?

Curr Opin Support Palliat Care

.

2020 Sep

;

14

(

3

):

213

–

8

.

.

https://doi.org/10.1136/amiajnl-2014-002817

54.

Hu

C

,

Kung

S

,

Rummans

TA

,

Clark

MM

,

Lapid

MI

.

Reducing caregiver stress with internet-based interventions: a systematic review of open-label and randomized controlled trials

.

J Am Med Inform Assoc

.

2015 Apr

;

22

(

e1

):

e194

–

209

.

.

https://doi.org/10.1002/pon.5271

55.

Kedia

SK

,

Collins

A

,

Dillon

PJ

,

Akkus

C

,

Ward

KD

,

Jackson

BM

.

Psychosocial interventions for informal caregivers of lung cancer patients: a systematic review

.

Psychooncology

.

2020 Feb 1

;

29

(

2

):

251

–

62

.

.

https://doi.org/10.1186/1745-6215-13-132

56.

Williamson

PR

,

Altman

DG

,

Blazeby

JM

,

Clarke

M

,

Devane

D

,

Gargon

E

,

Developing core outcome sets for clinical trials: issues to consider

.

Trials

.

2012 Aug 6

;

13

(

1

):

132

.

.

https://doi.org/10.1186/1745-6215-15-49

57.

Macefield

RC

,

Jacobs

M

,

Korfage

IJ

,

Nicklin

J

,

Whistance

RN

,

Brookes

ST

,

Developing core outcomes sets: methods for identifying and including patient-reported outcomes (PROs)

.

Trials

.

2014 Feb 5

;

15

(

1

):

49

.

.