Open access Original research What does integrated care ...

1Lawless MT, et al. BMJ Open 2020;10:e035157. doi:10.1136/bmjopen-2019-035157

Open access

What does integrated care mean from an older person’s perspective? A scoping review

Michael T. Lawless ,1 Amy Marshall,2 Manasi Murthy Mittinty ,3 Gillian Harvey2

To cite: Lawless MT, Marshall A, Mittinty MM, et al. What does integrated care mean from an older person’s perspective? A scoping review. BMJ Open 2020;10:e035157. doi:10.1136/bmjopen-2019-035157

► Prepublication history for this paper is available online. To view these files, please visit the journal online (http:// dx. doi. org/ 10. 1136/ bmjopen- 2019- 035157).

Received 21 October 2019Revised 16 December 2019Accepted 17 December 2019

1College of Nursing and Health Sciences, Flinders University, Bedford Park, South Australia, Australia2Adelaide Nursing School, The University of Adelaide, Adelaide, South Australia, Australia3Pain Management Research Institute, University of Sydney, Sydney, New South Wales, Australia

Correspondence toDr Michael T. Lawless; michael. lawless@ flinders. edu. au

Original research

© Author(s) (or their employer(s)) 2020. Re- use permitted under CC BY- NC. No commercial re- use. See rights and permissions. Published by BMJ.

Strengths and limitations of this study

► This is the first scoping review to identify, synthesise and appraise the quality of the available literature on older patients’ experiences and perceptions of integrated care based on their journeys through the health system.

► Our review is comprehensive in nature, incorporat-ing published peer- reviewed studies and grey litera-ture on patient experiences of care integration.

► We used a narrative descriptive technique to syn-thesise the findings of the studies and extracted en-ablers and barriers to integrated care from an older person’s perspective at the clinical, service and healthcare system levels.

► This review forms part of a larger body of research that aims to coproduce and evaluate locally relevant approaches designed to improve integrated care for older adults in South Australia.

► As this review incorporates studies drawing on dif-ferent terms and definitions and reporting on differ-ent health conditions across a variety of healthcare settings, it may lack specificity.

AbStrACtObjective To systematically map and synthesise the literature on older adults’ perceptions and experiences of integrated care.Setting Various healthcare settings, including primary care, hospitals, allied health practices and emergency departments.Participants Adults aged ≥60 years.Interventions Integrated (or similarly coordinated) healthcare.Primary and secondary outcome measures Using scoping review methodology, four electronic databases (EMBASE, CINAHL, PubMed and ProQuest Dissertation and Theses) and the grey literature (Open Grey and Google Scholar) were searched to identify studies reporting on older adults’ experiences of integrated care. Studies reporting on empirical, interpretive and critical research using any type of methodology were included. Four independent reviewers performed study selection, data extraction and analysis.results The initial search retrieved 436 articles, of which 30 were included in this review. Patients expressed a desire for continuity, both in terms of care relationships and management, seamless transitions between care services and/or settings, and coordinated care that delivers quick access, effective treatment, self- care support, respect for patient preferences, and involves carers and families.Conclusions Participants across the studies desired accessible, efficient and coordinated care that caters to their needs and preferences, while keeping in mind their rights and safety. This review highlights the salience of the relational, informational and organisational aspects of care from an older person’s perspective. Findings are transferable and could be applied in various healthcare settings to derive patient- centred success measures that reflect the aspects of integrated care that are deemed important to older adults and their supporters.

IntrOduCtIOnEvidence suggests that many older people are ‘falling through the gaps’ and experiencing fragmented care,1 particularly when they live with multimorbidity and frailty. In Australia, over 83% of the population aged over 75 years live with two or more chronic condi-tions2 and, in the USA, around half of the

population aged over 75 years is reported to live with three or more chronic conditions.3 This group commonly deals with health and functional challenges and reports almost twice as many problems resulting from poorly integrated care compared with those without multimorbidity.4 This is because they typically see several healthcare providers for different medical conditions, take multiple medi-cations, have numerous agencies involved in providing care and experience a higher incidence of hospitalisation.5 These circum-stances can compromise patient care, further contributing to poorer health outcomes, reduced quality of life and increased health-care utilisation and costs.

Care integration is proposed as a solu-tion to such fragmentation,6 with the poten-tial to improve patient experiences while minimising unnecessary use of healthcare resources. Definitions and terminology used

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2 Lawless MT, et al. BMJ Open 2020;10:e035157. doi:10.1136/bmjopen-2019-035157

Open access

to describe integrated care differ within the published literature. The WHO defines integrated care, or inte-grated health services delivery, as:

An approach to strengthen people- centred health systems through the promotion of the comprehen-sive delivery of quality services across the life- course, designed according to the multidimensional needs of the population and the individual and delivered by a coordinated multidisciplinary team of providers working across settings and levels of care.7 (p 10)

Attempts to improve care integration have been made through numerous policy and research endeav-ours, yet the extent to which such efforts have achieved wide- scale impact remains questionable. A key message from research to date is that there is no ‘one- size- fits- all’ approach to integrated care.8 Rather, successful design and implementation of integrated care models requires attending to contextual factors, including local enablers and barriers.6 Evidence to date indicates that the most successful implementation efforts are: (1) bottom- up rather than top- down; (2) driven by local need; and (3) have the support and engagement of all key stakeholders, particularly patients and their carers/families.3 This suggests the need to engage older adults, their families and carers, and care providers to achieve the most effec-tive care coordination and integration.

To date, relatively few studies have focused on patients’ perspectives on integrated care, although some research suggests that there may be distinct differences between provider and patient narratives.9 Patients are more likely to emphasise the importance of relational aspects of care and the everyday consequences of living with their condi-tion, as opposed to a clinical focus on managing specific health conditions. This reinforces the importance of understanding patients’ perspectives and views of inte-grated care, rather than focusing primarily on policy and service- level priorities—a point highlighted in previous research10 and the focus of this scoping review.

To our knowledge, no evidence synthesis has summarised the available literature on older adults’ views and expectations regarding integrated or similarly coor-dinated care. Starting with a focus on patient experiences rather than single- organisation or single- sector solutions,8 this review forms part of a larger programme of research that aims to coproduce and implement locally relevant approaches to improve integrated care for older adults at risk of repeated hospitalisation guided by a person- centred approach.11 12

review questionsThe review protocol has been published previously12 and sets out a plan to address the following questions:1. How do older patients define their views and experi-

ences of integrated care?2. What are the barriers and enablers of quality integrat-

ed care from an older person’s perspective?

3. What is the quality of the literature on older patients’ perspectives on integrated care?

4. What are the potential implications for the design and implementation of integrated care programmes for older people?

MAterIAlS And MethOdSScoping reviews are used to understand the existing breadth of research on a topic, identify gaps in existing literature and assess the need for further investigation.13 14 The scoping review methodology outlined by Arksey and O’Malley13 was employed, details of which are published in our protocol.12 The Preferred Reporting Items for Systematic Reviews and Meta- Analyses extension for scoping reviews checklist15 was used to guide reporting.

Identifying relevant studiesThe search strategy aimed to locate published peer- reviewed studies and grey literature reporting on the views of older adults aged ≥60 years (male or female) who had received integrated or similarly coordinated care of any definition in any type of healthcare setting. MMM performed the initial search in four electronic databases (EMBASE, CINAHL, PubMed and ProQuest) and two grey literature databases (Open Grey and Google Scholar). Studies published from June 2008 to July 2019 in English language were included to ensure feasibility and relevance to the current healthcare context, that is, studies conducted after the publication of a consensus definition of integrated care by the WHO.12 No limitations were placed on study design, type of healthcare setting, geographical location, or the upper age and gender of the participants. Literature search strategies were devel-oped using keywords pertinent to older patients and their perspectives. Appropriate variations in spelling and plurals were used in the search (table 1).

Study selectionStudies were selected via a three- step process. First, AM, GH and MMM independently screened titles and abstracts to determine inclusion status. A second screen of full- text articles (AM, ML) ensured that the studies met the inclusion criteria. Third, AM and ML assessed the remaining full- text records for eligibility. A third author (GH) assessed the articles when the other reviewers were uncertain about eligibility status. Disagreements between the reviewers were resolved through group discussion. Finally, we conducted bibliographic searching of the reference lists of the included articles to identify addi-tional potentially relevant studies.

data extractionAM, ML and GH used a standardised form to extract relevant data and consulted regularly to help main-tain uniformity during the extraction procedure. The following data were extracted: bibliographic informa-tion, aim(s) of study, additional research questions/objectives, study design characteristics, participant


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Table 1 Search terms used for PubMed database

Word group 1: older patients Word group 2: patient perspectives Word group 3: integrated care

‘Aged’[mh]ORolder patient*[tw]ORelderly patient*[tw]

views*[tw]ORperspective*[tw]ORexpectation*[tw]ORexperience*[tw]

‘Delivery of health care, integrated’[mh]ORintegrated care[tw]ORfragmented care[tw]ORcontinued care[tw]ORpreventative care service*[tw]ORpreventive services*[tw]ORcurative service*[tw]

characteristics, definition of integrated care provided, outcomes reported, most important findings containing patient voice, other relevant findings, conclusions, study limitations and author recommendations.

Quality appraisalAlthough it is not customary to undertake a quality appraisal as part of a scoping review,13 because the purpose of this review was to inform recommendations for healthcare policy and practice, a formal quality assess-ment was deemed appropriate. The Joanna Briggs Insti-tute critical appraisal checklists16 17 were used to assess the quality of final studies included in the review. We used these checklists due to their brevity, clarity and explicit focus on appraising the voices of participants and their role in generating and/or interpreting the research findings. These tools are designed to assess the meth-odological quality of studies and determine the extent to which studies have addressed the possibility of bias in study design, conduct or analysis. ML, AM and GH independently assessed the papers; scores were catego-rised into ‘low’ (1–3/10 for qualitative research; 1–2/8 for quantitative research), ‘average’ (4–7/10; 3–5/8) and ‘high’ (8–10/10; 6–8/8) ranges for each assessment tool. These ranges were used to define an overall quality rating for each article. In line with scoping review methodology and in contrast to systematic review methodology, articles were not excluded on the basis of methodological quality assessment or intervention effectiveness.

reporting the resultsA narrative descriptive technique was used to synthesise the findings of the studies.18 19 Using this approach, we familiarised ourselves with the completed data extraction forms and inductively generated codes as they related to the review questions and aims. Studies and their findings were then grouped into logical categories and common themes were identified. Potential enablers and barriers were extracted from the synthesis and categorised into the corresponding thematic categories using a combined inductive and deductive approach. The final themes were decided on through deliberation and reference to

supportive data. Analytical rigour was upheld through regular team meetings in which codes, categories and major themes were discussed and crosschecked with an audit trail maintained in a Microsoft Excel workbook.

Patient and public involvementA local advisory group working with older adults was engaged periodically during the review process.12 To ensure a patient- centred approach and to facilitate the application of the review findings, results will be dissemi-nated among patients, carers and other stakeholders and presented at public forums. Findings from this review will feed into ongoing research with the objective of copro-ducing and evaluating local initiatives designed to improve integrated care for older adults in South Australia.

reSultSSearch resultsFour hundred and thirty- six articles were retrieved from the initial search and, following the removal of dupli-cates (n=100), 336 articles were screened for eligibility. Fifty- six articles were selected for full- text review and, of these, 26 articles were included in the review. Reference list searching identified an additional four articles, which are included in the final review (figure 1).

description of studiesFifteen studies (50%) used a qualitative methodology,20–34 while the remainder used a quantitative methodology (20%, n=635–40), or a mixed methodology (20%, n=641–46). Three records (10%) were reports produced by two non- government organisations in the UK.47–49 Most of the studies were conducted in Europe (53%, n=16) or North America (40%, n=12). Sample sizes of patient groups or subgroups (ie, older adults) ranged from 4 to 15 617 participants. The average age of participants in the older adult/patient groups ranged from 59 to 87 years. Although we focused on the experiences of older people, studies reporting on younger participants (ie, aged <60 years) were included if the average age of participants was ≥60 years due to the limited number of eligible studies


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Figure 1 Preferred Reporting Items for Systematic Reviews and Meta- Analyse (PRISMA) flow diagram.

reporting exclusively on older people. Participants had one or more of the following conditions: chronic obstruc-tive pulmonary disease, cancer, coronary heart disease, diabetes, stroke, arthritis and asthma (table 2).

Six articles (20%) provided a definition of integrated care.20 26 28 30 44 46 Although definitions varied, they cited common elements and/or principles including: comprehensive services, coordinated care, patient focus, multidisciplinary and/or interprofessional teamwork, effective information systems, optimised resource use, and appropriate organisational culture and leadership. None of the studies explicitly referenced the WHO definition of integrated care.7 Reflecting the diffuse research literature on integrated care across academic

journals and disciplines and the inconsistent termi-nology used to describe integrated care programmes, initiatives, settings and/or evaluations,50 several other concepts and terms were mentioned or defined in the articles in relation to care integration: ‘care coordina-tion’,22 27 39 40 ‘continuity of care’,25 32 38 47 ‘shared care’,31 ‘collaborative self- management’,43 ‘person-/patient- centred care’.24 29 36 37 39 41

Quality of the included articlesThe methodological quality of the included studies was rated as ‘average’ (15 studies) to ‘high’ (12 studies); quality appraisal was not performed on the three reports. Common limitations of the qualitative papers were: lack


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Tab

le 2

S

umm

ary

of in

clud

ed s

tud

ies

Aut

hor(

s) a

nd

pub

licat

ion

year

Tit

leC

oun

try

of

stud

yP

urp

ose

Stu

dy

des

ign

char

acte

rist

ics

Par

tici

pan

t ch

arac

teri

stic

s

Defi

niti

on

of

inte

gra

ted

car

e us

ed

in s

tud

y

Alg

ilani

et

al

(201

7)41

An

inte

ract

ive

ICT

pla

tfor

m

for

early

ass

essm

ent

and

m

anag

emen

t of

pat

ient

- rep

orte

d

conc

erns

am

ong

old

er a

dul

ts

livin

g in

ord

inar

y ho

usin

g—d

evel

opm

ent

and

feas

ibili

ty

Sw

eden

To d

evel

op a

nd t

est

feas

ibili

ty a

nd

acce

pta

bili

ty o

f an

inte

ract

ive

ICT

pla

tfor

m

inte

grat

ed in

a t

able

t fo

r co

llect

ing

and

m

anag

ing

pat

ient

- rep

orte

d c

once

rns

of

old

er a

dul

ts in

hom

e ca

re

Mix

ed- m

etho

ds

des

ign

com

bin

ing

inte

rvie

ws

with

ol

der

ad

ults

and

hea

lthca

re

pro

fess

iona

ls, a

nd lo

gged

q

uant

itativ

e d

ata

n=8

Sw

edis

h- sp

eaki

ng o

lder

ad

ults

reg

iste

red

in a

nd

rece

ivin

g as

sist

ance

and

/or

regu

lar

cont

act

with

a n

urse

in

the

hea

lthca

re s

yste

m

Non

e p

rovi

ded

Bai

llie

et a

l (2

014)

20C

are

tran

sitio

ns fo

r fr

ail,

old

er

peo

ple

from

acu

te h

osp

ital w

ard

s w

ithin

an

inte

grat

ed h

ealth

care

sy

stem

in E

ngla

nd: a

qua

litat

ive

case

stu

dy

UK

To in

vest

igat

e ca

re t

rans

ition

s of

frai

l ol

der

peo

ple

from

acu

te h

osp

ital w

ard

s to

com

mun

ity h

ealth

care

or

com

mun

ity

hosp

ital w

ard

s, w

ithin

a s

yste

m t

hat

had

ve

rtic

ally

inte

grat

ed a

cute

hos

pita

l and

co

mm

unity

hea

lthca

re s

ervi

ces

Mul

timet

hod

qua

litat

ive

stud

y in

clud

ing

ind

ivid

ual

inte

rvie

ws

and

focu

s gr

oup

s

n=17

key

hos

pita

l war

d

staf

f (G

Ps,

ad

ult

com

mun

ity

heal

thca

re le

ad, d

istr

ict

nurs

es, c

omm

unity

p

hysi

othe

rap

ist,

com

mun

ity

occu

pat

iona

l the

rap

ist);

n=

36 w

ard

sta

ff; n

=4

old

er a

dul

ts (7

5% fe

mal

e;

age

rang

e 78

–98

year

s)

und

ergo

ing

care

tra

nsiti

ons

‘Inte

grat

ion

is t

he

com

bin

atio

n of

m

etho

ds,

pro

cess

es

and

mod

els

that

aim

to

ach

ieve

inte

grat

ed

care

, whi

ch is

an

orga

nisi

ng p

rinci

ple

for

care

del

iver

y th

at a

ims

to im

pro

ve p

atie

nt

care

thr

ough

bet

ter

coor

din

atio

n’

Bay

liss

et a

l (2

008)

21P

roce

sses

of c

are

des

ired

b

y el

der

ly p

atie

nts

with

m

ultim

orb

iditi

es

US

ATo

exp

lore

pro

cess

es o

f car

e d

esire

d b

y el

der

ly p

atie

nts

who

hav

e m

ultim

orb

iditi

es

that

may

pre

sent

com

pet

ing

dem

and

s fo

r p

atie

nts

and

pro

vid

ers

Qua

litat

ive

des

ign

usin

g in

div

idua

l int

ervi

ews

n=26

non

- for

- pro

fit H

ealth

M

aint

enan

ce O

rgan

izat

ion

mem

ber

s (5

0% fe

mal

e) a

ged

65

–84

year

s

Non

e p

rovi

ded

Ber

end

sen

et

al (2

009)

22Tr

ansi

tion

of c

are:

exp

erie

nces

an

d p

refe

renc

es o

f pat

ient

s ac

ross

the

prim

ary/

seco

ndar

y in

terf

ace—

qua

litat

ive

stud

y

Net

herla

nds

To e

xplo

re t

he t

rans

ition

of c

are

at t

he

prim

ary–

sec

ond

ary

inte

rfac

e w

ith r

efer

ence

to

the

imp

act

of p

atie

nts’

ab

ility

to

mak

e ch

oice

s ab

out

thei

r se

cond

ary

care

p

rovi

der

s

Exp

lora

tory

qua

litat

ive

des

ign

with

sem

istr

uctu

red

fo

cus

grou

ps

n=71

Dut

ch p

atie

nts

who

ha

d b

een

refe

rred

to

a sp

ecia

list

with

in t

he p

ast

2 ye

ars

Non

e p

rovi

ded

Blo

m e

t al

(2

016)

35E

ffect

iven

ess

and

cos

t-

effe

ctiv

enes

s of

a p

roac

tive,

go

al- o

rient

ed, i

nteg

rate

d c

are

mod

el in

gen

eral

pra

ctic

e fo

r ol

der

peo

ple

. A c

lust

er

rand

omis

ed c

ontr

olle

d t

rial:

inte

grat

ed s

yste

mat

ic c

are

for

old

er p

eop

le—

the

ISC

OP

E s

tud

y

Net

herla

nds

To a

sses

s th

e ef

fect

iven

ess

and

cos

t-

effe

ctiv

enes

s of

a s

imp

le s

truc

tura

l m

onito

ring

syst

em t

o d

etec

t th

e d

eter

iora

tion

in s

omat

ic, f

unct

iona

l, m

enta

l or

soc

ial h

ealth

of i

ndiv

idua

ls a

ged

75

and

ov

er fo

llow

ed b

y th

e ex

ecut

ion

of a

car

e p

lan

for

thos

e p

eop

le w

ith a

com

bin

atio

n of

som

atic

, fun

ctio

nal,

men

tal a

nd s

ocia

l p

rob

lem

s

Ob

serv

er- b

lind

ed c

lust

er

rand

omis

ed c

ontr

olle

d t

rial

n=72

85 o

lder

ad

ults

with

co

mp

lex

heal

th p

rob

lem

s at

tend

ing

gene

ral p

ract

ices

in

Lei

den

, Net

herla

nds

Non

e p

rovi

ded

Bur

ridge

et

al

(201

6)23

Mak

ing

sens

e of

cha

nge:

p

atie

nts'

vie

ws

of d

iab

etes

and

G

P- l

ed in

tegr

ated

dia

bet

es c

are

Aus

tral

iaTo

inve

stig

ate

pat

ient

s’ p

erce

ptio

ns a

nd

exp

erie

nces

of t

ype

2 d

iab

etes

, sel

f- ca

r e

and

eng

agem

ent

with

a G

P- l

ed in

tegr

ated

d

iab

etes

car

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odel

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litat

ive

inte

rvie

ws,

th

emat

ic a

naly

sis

usin

g no

rmal

isat

ion

pro

cess

th

eory

n=30

old

er p

atie

nts

with

typ

e 2

dia

bet

esN

one

pro

vid

ed

Che

ng (2

017)

24E

mot

ions

, sig

nific

ance

and

im

pro

vem

ent

exp

ecta

tions

: the

p

erso

nal m

atte

r of

a p

atie

nt’s

ho

spita

l sta

y

Can

ada

To le

arn

abou

t p

atie

nts’

per

spec

tives

of

hosp

ital c

are

to g

ain

insi

ghts

ab

out

the

spec

ifics

of p

atie

nt- c

entr

ed c

are

Qua

litat

ive

anal

ysis

of

Nat

iona

l Res

earc

h C

orp

orat

ion

Can

ada

adul

t in

pat

ient

sur

vey

resp

onse

s

n=16

38 r

esp

onse

s fr

om

pat

ient

s an

d h

osp

ital

dis

char

ges

from

22

units

Non

e p

rovi

ded Con

tinue

d


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Aut

hor(

s) a

nd

pub

licat

ion

year

Tit

leC

oun

try

of

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yP

urp

ose

Stu

dy

des

ign

char

acte

rist

ics

Par

tici

pan

t ch

arac

teri

stic

s

Defi

niti

on

of

inte

gra

ted

car

e us

ed

in s

tud

y

Coo

k et

al

(201

7)42

Old

er U

K s

helte

red

hou

sing

te

nant

s’ p

erce

ptio

ns o

f wel

l-

bei

ng a

nd t

heir

usag

e of

hos

pita

l se

rvic

es

UK

To e

xam

ine

shel

tere

d h

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enan

ts’

view

s of

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lth a

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bei

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stra

tegi

es t

hey

adop

ted

to

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por

t th

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wel

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lth a

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nd

mix

ed-

met

hod

s ap

pro

ach

enco

mp

assi

ng t

enan

ts’

per

cep

tions

of h

ealth

and

w

ell-

bei

ng, a

naly

sis

of

the

serv

ice’

s he

alth

and

w

ell-

bei

ng d

atab

ase

and

an

alys

is o

f em

erge

ncy

and

ele

ctiv

e ho

spita

l ad

mis

sion

s

n=97

8 te

nant

s liv

ing

in

shel

tere

d h

ousi

ngN

one

pro

vid

ed

Cow

ie e

t al

(2

009)

25E

xper

ienc

e of

con

tinui

ty o

f car

e of

pat

ient

s w

ith m

ultip

le lo

ng-

term

con

diti

ons

in E

ngla

nd

UK

To e

xam

ine

pat

ient

s’ e

xper

ienc

es o

f co

ntin

uity

of c

are

in t

he c

onte

xt o

f diff

eren

t lo

ng- t

erm

con

diti

ons

and

mod

els

of c

are,

an

d t

o ex

plo

re im

plic

atio

ns fo

r th

e fu

ture

or

gani

satio

n ca

re o

f lon

g- te

rm c

ond

ition

s

Qua

litat

ive

des

ign

with

se

mis

truc

tur e

d in

terv

iew

sn=

33 p

atie

nts

with

mul

tiple

lo

ng- t

erm

con

diti

ons

Defi

nitio

n of

‘con

tinui

ty

of c

are’

pro

vid

ed

Der

ksen

et

al

(201

2)26

A lo

cal c

onse

nsus

pro

cess

m

akin

g us

e of

focu

s gr

oup

s to

en

hanc

e th

e im

ple

men

tatio

n of

a

natio

nal i

nteg

rate

d h

ealth

car

e st

and

ard

on

obes

ity c

are

Net

herla

nds

To u

nder

stan

d e

xper

ienc

es a

nd

exp

ecta

tions

of h

ealth

care

pro

fess

iona

ls

and

pat

ient

s co

ncer

ning

op

por

tuni

ties

and

b

arrie

rs fo

r lo

cal o

verw

eigh

t/ob

esity

car

e

Exp

lora

tory

qua

litat

ive

stud

y us

ing

focu

s gr

oup

s an

d in

div

idua

l int

ervi

ews

n=24

old

er a

dul

ts li

ving

in

dep

end

ently

in Z

wol

le,

Net

herla

nds

‘Inte

grat

ed c

are

incl

udes

pre

vent

ion,

sc

reen

ing,

dia

gnos

is,

trea

tmen

t, r

elap

se

pre

vent

ion

and

long

te

rm c

are’

no

sour

ce.

‘The

cen

tral

aim

of

rece

nt g

uid

elin

es

and

inte

grat

ed h

ealth

st

and

ard

s is

the

or

gani

satio

n of

pat

ient

or

ient

ed c

are

and

the

su

pp

ort

of p

atie

nts'

se

lf m

anag

emen

t’

Eb

rahi

mi e

t al

(2

017)

36E

ffect

s of

a c

ontin

uum

of c

are

inte

rven

tion

on fr

ail e

lder

s’ s

elf-

ra

ted

hea

lth, e

xper

ienc

es o

f se

curit

y/sa

fety

and

sym

pto

ms:

a

rand

omis

ed c

ontr

olle

d t

rial

Sw

eden

To e

valu

ate

the

effe

cts

of t

he in

terv

entio

n on

se

lf- ra

ted

hea

lth, e

xper

ienc

es o

f sec

urity

/sa

fety

and

sym

pto

ms

Non

- blin

ded

con

trol

led

tria

ln=

161

frai

l old

er a

dul

ts a

t hi

gh r

isk

of fu

rthe

r ca

re

cons

ump

tion

Non

e p

rovi

ded

Free

man

an

d H

ughe

s (2

010)

47

Con

tinui

ty o

f car

e an

d t

he p

atie

nt

exp

erie

nce:

an

inq

uiry

into

the

q

ualit

y of

gen

eral

pra

ctic

e in

E

ngla

nd

UK

To e

xam

ine

cont

inui

ty o

f car

e in

gen

eral

p

ract

ice,

with

a p

artic

ular

em

pha

sis

on

und

erst

and

ing

‘goo

d c

ontin

uity

’ fro

m t

he

pat

ient

’s p

oint

of v

iew

, con

sid

erin

g th

e d

iffer

ent

typ

es o

f con

tinui

ty d

istin

guis

hed

b

y re

sear

cher

s an

d t

heir

rela

tions

hip

to

othe

r as

pec

ts o

f qua

lity

in p

rimar

y ca

re, a

nd

asse

ssin

g th

e st

ate

of t

he a

rt o

f mea

surin

g co

ntin

uity

of c

are

Mix

ed- m

etho

ds

des

ign

invo

lvin

g a

sear

ch o

f p

ublis

hed

res

earc

h an

d

othe

r re

leva

nt d

ocum

ents

, fo

llow

ing

up le

ads

from

ke

y so

urce

s an

d in

div

idua

l in

terv

iew

s w

ith G

Ps

and

ot

her

mem

ber

s of

pra

ctic

e te

ams

n=3

pra

ctic

e m

anag

ers,

n=

8 G

Ps

(incl

udin

g p

artn

ers

and

tr

aine

es),

n=6

rece

ptio

nist

s an

d n

=2

nurs

es

Defi

nitio

n of

‘con

tinui

ty

of c

are’

pro

vid

ed

Tab

le 2

C

ontin

ued

Con

tinue

d


http://bmjopen.bm

j.com/

BM



nloaded from



Open access

Aut

hor(

s) a

nd

pub

licat

ion

year

Tit

leC

oun

try

of

stud

yP

urp

ose

Stu

dy

des

ign

char

acte

rist

ics

Par

tici

pan

t ch

arac

teri

stic

s

Defi

niti

on

of

inte

gra

ted

car

e us

ed

in s

tud

y

Hep

wor

th e

t al

(2

013)

27‘W

orki

ng w

ith t

he t

eam

’: an

ex

plo

rato

ry s

tud

y of

imp

rove

d

typ

e 2

dia

bet

es m

anag

emen

t in

a

new

mod

el o

f int

egra

ted

prim

ary/

seco

ndar

y ca

re

Aus

tral

iaTo

exp

lore

how

a n

ew m

odel

of i

nteg

rate

d

prim

ary/

seco

ndar

y ca

re fo

r ty

pe

2 d

iab

etes

m

anag

emen

t re

late

d t

o im

pro

ved

dia

bet

es

man

agem

ent

in a

sel

ecte

d g

roup

of p

atie

nts

Qua

litat

ive

rese

arch

d

esig

n w

ith s

emis

truc

ture

d

inte

rvie

ws

and

crit

ical

cas

e sa

mp

ling

n=10

pat

ient

s w

ith t

ype

2 d

iab

etes

att

end

ing

the

Bris

ban

e S

outh

Com

ple

x D

iab

etes

Ser

vice

Non

e p

rovi

ded

Jack

son

et a

l (2

012)

28P

atie

nt jo

urne

y: im

plic

atio

ns fo

r im

pro

ving

and

inte

grat

ing

care

fo

r ol

der

ad

ults

with

chr

onic

ob

stru

ctiv

e p

ulm

onar

y d

isea

se

Can

ada

To s

umm

aris

e th

e ex

per

ienc

es o

f fou

r p

atie

nts

with

CO

PD

as

they

inte

ract

ed

with

the

hea

lthca

re s

yste

m o

ver

a 3-

mon

th

per

iod

follo

win

g ho

spita

l dis

char

ge, w

ith

a vi

ew t

o in

form

ing

the

dev

elop

men

t of

a

mor

e in

tegr

ated

ap

pro

ach

to s

ervi

ce

del

iver

y an

d im

pro

ved

qua

lity

of c

are

Cas

e st

udy

met

hod

olog

y us

ing

sem

istr

uctu

red

in

terv

iew

s an

d p

atie

nts’

lo

gs

n=3

old

er a

dul

ts w

ith a

p

rimar

y or

sec

ond

ary

dia

gnos

is o

f CO

PD

who

w

ere

dis

char

ged

hom

e or

to

seni

ors’

hou

sing

‘Prin

cip

les

to

achi

eve

a fu

lly

inte

grat

ed h

ealth

sy

stem

…in

clud

e (a

) com

pre

hens

ive

serv

ices

acr

oss

the

care

con

tinuu

m; (

b)

pat

ient

focu

s; (c

) ge

ogra

phi

c co

vera

ge

and

ros

terin

g; (d

) st

and

ard

ized

car

e d

eliv

ery

thro

ugh

inte

rpro

fess

iona

l te

ams;

(e) p

erfo

rman

ce

man

agem

ent;

(f)

info

rmat

ion

syst

ems;

(g

) org

aniz

atio

nal

cultu

re a

nd le

ader

ship

; (h

) phy

sici

an

inte

grat

ion;

(i)

gove

rnan

ce s

truc

ture

; an

d (j

) fina

ncia

l m

anag

emen

t’

Jeon

et

al

(201

0)29

Ach

ievi

ng a

bal

ance

d li

fe in

the

fa

ce o

f chr

onic

illn

ess

Aus

tral

iaTo

dev

elop

an

in- d

epth

und

erst

and

ing

of

the

exp

erie

nce

of p

atie

nts

and

fam

ily c

arer

s af

fect

ed b

y ch

roni

c ill

ness

tha

t w

ill b

e th

e b

asis

on

whi

ch t

o p

rop

ose

pol

icy

and

he

alth

sys

tem

inte

rven

tions

tha

t ar

e p

atie

nt

cent

red

Qua

litat

ive

des

ign

with

se

mis

truc

ture

d in

- dep

th

inte

rvie

ws

n=52

pat

ient

s (4

6% fe

mal

e,

67%

age

d ≥

65 y

ears

, 21%

In

dig

enou

s A

ustr

alia

ns, 2

1%

cultu

rally

and

ling

uist

ical

ly

div

erse

(CA

LD))

and

n=

14

care

rs (9

3% fe

mal

e, 5

0%

aged

≥65

yea

rs, 0

%

Ind

igen

ous,

36%

CA

LD)

Non

e p

rovi

ded

John

ston

et

al

(200

9)43

Des

igni

ng a

nd t

estin

g a

web

- bas

ed in

terf

ace

for

self-

m

onito

ring

of e

xerc

ise

and

sy

mp

tom

s fo

r ol

der

ad

ults

with

ch

roni

c ob

stru

ctiv

e p

ulm

onar

y d

isea

se

US

ATo

des

crib

e ou

r p

roce

ss o

f dev

elop

ing

a se

t of

inte

grat

ed t

ools

to

sup

por

t co

llab

orat

ive

sym

pto

m a

nd e

xerc

ise

mon

itorin

g fo

r p

atie

nts

with

chr

onic

ob

stru

ctiv

e p

ulm

onar

y d

isea

se (C

OP

D) w

ho m

ay b

e ex

per

ienc

ing

bre

athi

ng d

ifficu

lties

Mix

ed- m

etho

ds

four

- p

hase

des

ign

invo

lvin

g se

mis

truc

ture

d in

terv

iew

s,

a ta

rget

ed r

evie

w o

f p

ublic

ly a

vaila

ble

sel

f-

mon

itorin

g to

ols,

sof

twar

e d

evel

opm

ent

and

fiel

d

usab

ility

tes

ting

n=14

pat

ient

s w

ith C

OP

DN

one

pro

vid

ed

Tab

le 2

C

ontin

ued

Con

tinue

d


http://bmjopen.bm

j.com/

BM



nloaded from



Open access

Aut

hor(

s) a

nd

pub

licat

ion

year

Tit

leC

oun

try

of

stud

yP

urp

ose

Stu

dy

des

ign

char

acte

rist

ics

Par

tici

pan

t ch

arac

teri

stic

s

Defi

niti

on

of

inte

gra

ted

car

e us

ed

in s

tud

y

Jub

elt

et a

l (2

014)

37P

atie

nt r

atin

gs o

f cas

e m

anag

ers

in a

med

ical

hom

e: a

ssoc

iatio

ns

with

pat

ient

sat

isfa

ctio

n an

d

heal

th c

are

utili

zatio

n

US

ATo

mea

sure

the

ass

ocia

tion

of p

atie

nt

per

cep

tions

of p

atie

nt- c

entr

ed m

edic

al

hom

e ca

se m

anag

er p

erfo

rman

ce w

ith

over

all s

atis

fact

ion

and

sub

seq

uent

he

alth

care

util

isat

ion

Ret

rosp

ectiv

e co

hort

st

udy

of p

atie

nts

with

in

an in

tegr

ated

hea

lthca

re

syst

em

n=14

15 p

atie

nts

with

cl

inic

ally

com

ple

x co

nditi

ons

Non

e p

rovi

ded

Liss

et

al

(201

1)38

Pat

ient

- rep

orte

d c

are

coor

din

atio

n: a

ssoc

iatio

ns w

ith

prim

ary

care

con

tinui

ty a

nd

spec

ialty

car

e us

e

US

ATo

inve

stig

ate

the

asso

ciat

ion

bet

wee

n ca

re

coor

din

atio

n an

d c

ontin

uity

of p

rimar

y ca

re

and

diff

eren

ces

in t

his

asso

ciat

ion

by

leve

l of

sp

ecia

lty c

are

use

Cro

ss- s

ectio

nal s

tud

y in

volv

ing

surv

ey

info

rmat

ion

on p

atie

nt

exp

erie

nces

and

au

tom

ated

hea

lthca

re

utili

satio

n d

ata

n=20

51 M

edic

are

enro

llees

w

ith s

elec

t ch

roni

c co

nditi

ons

in a

n in

tegr

ated

he

alth

care

del

iver

y sy

stem

in

Was

hing

ton

Sta

te, U

SA

Defi

nitio

n of

‘con

tinui

ty

of c

are’

pro

vid

ed

Nat

iona

l Vo

ices

(201

2)48

Prin

cip

les

for

inte

grat

ed c

are

UK

To d

escr

ibe

‘suc

cess

’ fro

m t

he p

ersp

ectiv

e of

pat

ient

s an

d t

o d

iscu

ss m

easu

res

of

succ

ess

Rep

ort

with

lite

ratu

re

revi

ewN

AIn

tegr

ated

car

e m

entio

ned

but

not

d

efine

d

Nat

iona

l Vo

ices

(201

3)49

Inte

grat

ed c

are:

wha

t d

o p

atie

nts,

ser

vice

use

rs a

nd

care

rs w

ant?

UK

To s

umm

aris

e vi

ews

of p

atie

nts,

ser

vice

us

ers

and

car

ers

rega

rdin

g w

hat

they

w

ant

from

inte

grat

ed c

are,

con

sid

erin

g im

plic

atio

ns fo

r ed

ucat

ion,

tra

inin

g an

d

pub

lic h

ealth

Rep

ort

with

lite

ratu

re

revi

ewN

AIn

tegr

ated

car

e m

entio

ned

but

not

d

efine

d

Osb

orn

et a

l (2

014)

39In

tern

atio

nal s

urve

y of

old

er

adul

ts fi

nds

shor

tcom

ings

in

acc

ess,

coo

rdin

atio

n an

d

pat

ient

- cen

tred

car

e

Ele

ven

coun

trie

s,

incl

udin

g A

ustr

alia

, U

SA

, UK

, C

anad

a,

New

Zea

land

To a

sses

s ho

w t

he h

ealth

sys

tem

per

form

s,

with

a p

artic

ular

focu

s on

acc

ess

to c

are,

ch

roni

c co

nditi

ons

and

car

e co

ord

inat

ion,

p

atie

nt e

ngag

emen

t, s

ocia

l car

e ne

eds

and

en

d- o

f- lif

e ca

re p

lann

ing

Com

put

er- a

ssis

ted

te

lep

hone

inte

rvie

ws

of

natio

nally

rep

rese

ntat

ive

rand

om s

amp

les

in 1

1 co

untr

ies

n=15

617

old

er a

dul

ts a

ged

≥6

5 ye

ars

cont

acte

d b

y m

arke

t re

sear

ch fi

rms

via

mob

ile a

nd/o

r la

ndlin

e p

hone

Non

e p

rovi

ded

Rim

mer

et

al

(201

5)30

The

des

ign

and

initi

al p

atie

nt

eval

uatio

n of

an

inte

grat

ed c

are

pat

hway

for

faec

al in

cont

inen

ce:

a q

ualit

ativ

e st

udy

UK

To d

escr

ibe

a no

vel i

nteg

rate

d c

are

pat

hway

fo

r th

e m

anag

emen

t of

faec

al in

cont

inen

ce

(FI)

and

exa

min

e th

e ex

per

ienc

es o

f pat

ient

s w

ith F

I in

rela

tion

to t

his

pat

hway

Focu

s gr

oup

s an

d n

arra

tive

inte

rvie

ws

n=13

pat

ient

s w

ith F

I‘In

tegr

ated

car

e p

athw

ays

(ICP

s)

are

mul

tidis

cip

linar

y p

lans

tha

t p

red

ict

the

cour

se o

f eve

nts

in t

he

trea

tmen

t of

pat

ient

s w

ith s

imila

r p

rob

lem

s.

The

aim

of a

n IC

P is

to

enh

ance

the

qua

lity

of c

are

by

imp

rovi

ng

pat

ient

out

com

es,

pro

mot

ing

pat

ient

sa

fety

, inc

reas

ing

pat

ient

sat

isfa

ctio

n an

d o

ptim

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e us

e of

res

ourc

es’

Tab

le 2

C

ontin

ued

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tinue

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llow

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char

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n in

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it: p

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f p

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and

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liai

son

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inic

ian

Can

ada

To u

nder

stan

d p

atie

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rea

sons

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ent

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th

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nter

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er p

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ch

roni

c ill

ness

esN

one

pro

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skou

et

al

(201

4)34

A q

ualit

ativ

e st

udy

of in

tegr

ated

ca

re fr

om t

he p

ersp

ectiv

es o

f p

atie

nts

with

chr

onic

ob

stru

ctiv

e p

ulm

onar

y d

isea

se a

nd t

heir

rela

tives

Den

mar

kTo

exa

min

e ho

w p

atie

nts

with

CO

PD

an

d t

heir

rela

tives

exp

erie

nce

inte

grat

ed

care

acr

oss

care

set

tings

aft

er t

he

imp

lem

enta

tion

of a

CO

PD

dis

ease

m

anag

emen

t p

rogr

amm

e

Qua

litat

ive

des

ign

with

focu

s gr

oup

s an

d

sem

istr

uctu

red

inte

rvie

ws

n=34

pat

ient

s w

ith C

OP

DN

one

pro

vid

ed

GP,

gen

eral

pra

ctiti

oner

; IC

T, In

form

atio

n an

d C

omm

unic

atio

n Te

chno

logy

; NA

, not

ap

plic

able

.

Tab

le 2

C

ontin

ued


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of acknowledgement of the influence of the researcher on the research or vice versa20–23 25–28 30 31 33 34 37 40 41 43 45; lack of a statement about the cultural or theoretical posi-tion of the researcher21–23 25–27 29–31 33 34 37 41 43 45; and a lack of congruity between the stated philosophical or theoretical perspective and the research method-ology.21 22 24–27 29–34 37 40 For quantitative studies, the most common limitation was inadequate consideration of confounding factors (100%).

Synthesis of findingsFive themes were identified reflecting older adults’ experiences and views of integrated care: (1) access and availability; (2) involvement, initiative and follow- up; (3) communication and information; (4) referral and care transitions; and (5) coordination and cooperation.

Access and availabilityParticipants in 10 studies identified the ability to access healthcare providers and services as crit-ical.21 25 27–29 34 36 41 47 49 Access was generally discussed in relation to: physical accessibility,21 25 28 34 conve-nient access to a known and trusted professional when needed21 25 28 34 47 49; and access difficulties due to service eligibility restrictions, lack of formal home support and/or the unavailability of needed services or supports in different geographical locations.28 34 49 Three papers discussed difficulties associated with the physical accessi-bility of services.25 28 34 Problems related to physical access caused significant anxiety for participants, especially when these issues were compounded by unexpectedly long waiting times.25

Access was discussed in relation to the continuity of relationships in 10 articles.21 23 29 34–36 42–44 48 Participants generally spoke of relationship continuity in terms of the establishment and maintenance of relationships between patients, their carers/families and a known and trusted health or social care professional, as well as positive health and psychosocial impacts of such rela-tionships.22 23 25 47 One report47 stated that patients ‘have clear preferences’ regarding seeing a familiar healthcare professional, such as a general practitioner (GP), giving this preference greater priority still when problems are chronic or distressing. Although patients valued having a long- standing relationship with a single provider, they were prepared to forgo seeing a familiar provider in favour of quick access.47

Nine studies discussed the applicability of technologies as part of integrated care approaches for older popula-tions.21 28 31 34 35 41 43 48 49 Participants viewed technology as having an important role, particularly when they expe-rienced difficulty in accessing services, when care plans became increasingly complex and/or were updated repeatedly, and when additional information was needed urgently.21 48 49 Three studies described technical and experiential factors associated with the successful imple-mentation of technologies.35 41 43 Participants in these studies identified user- friendliness34 and supported

self- care41 43 as key factors influencing their views on specific technologies.

Involvement, initiative and follow-upParticipants wanted to be involved in decisions about their care and treatment in accordance with their needs, preferences and capacities at the time of the encounter.20 22 26 28 32 34 39 48 49 Although participants gener-ally expected to be involved in decisions regarding their care, treatment and medicines,49 they often felt that care was not ‘centred’ on them.32 Some participants did not want, or were unable, to make their own healthcare deci-sions, stating that they preferred to leave decisions up to their family doctor, particularly those related to referral.22 Others expressed that although they preferred their family doctor to consult with them, they ultimately wanted to be kept informed and given the opportunity to make their own decisions with the support of health profes-sionals.22 28 49 Participants felt that there was less scope for them to make decisions when consulting with specialists26 or when planning for discharge from hospital.20

The importance of initiative and follow- up was discussed in seven articles.22 26 28 34 44 48 49 Participants expected providers to demonstrate initiative by being knowledge-able about their condition and the patient ‘as a person’,49 considering the applicability of diagnostic investigation, regularly reviewing patients’ care and treatment and opening up discussions about referral and/or patients’ home care needs.34 48 Participants expected providers to take responsibility for following up on previously initiated actions. Indicators of lack of follow- up included missing test results, sudden termination of home care and support without a needs reassessment and serious health condi-tions remaining untreated for a significant period of time following initial diagnosis.34

Participants’ views on the involvement and needs of carers and families varied.20 22 28 32 48 49 Participants appre-ciated when carers accompanied them to appointments with healthcare professionals because it assisted them with comprehension, remembering care instructions, scheduling future appointments and providing personal health information when necessary.28 This was some-times difficult, however, as carers were generally ‘further removed’ from the dissemination of information.32 As a result, confusion often existed between professionals and carers about individual roles and responsibilities, resulting in ‘blurred boundaries’ and ambiguity in infor-mation sharing and flow. Patients considered it important to attend to carers’ informational and emotional needs, for example, by providing them with instructions about disease management and assessing their stress tolerance.22

Communication and informationOlder adults expected highly developed communica-tion skills and clear, comprehensive information from all providers with whom they interacted regardless of their condition(s), the care setting or the provider’s qualifica-tion.21 22 24 26–28 30 32 34 47 49 Clarity, attentiveness, empathy


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and respect were generally considered to be important elements of ‘good’ patient–provider communication and relationships.21 22 24–28 34 46 47 Participants expected providers to demonstrate these traits/competencies by: listening carefully to patients’ perspectives and prefer-ences; informing patients of the relative advantages and disadvantages of referrals and treatments; providing personalised care (ie, not treating patients ‘like a number’46 49); using appropriate and accessible language; taking patients’ concerns seriously; and responding empathetically to patients’ emotions. These actions were reported to enable open communication and shared decision- making,34 increase patients’ motivation to engage in healthy lifestyle practices26 and help patients feel supported and ‘cared for’.24 27 46 Failure to recognise and respond to patients’ emotions was seen to undermine the therapeutic relationship and compromise patients’ perceptions of safety and care quality.24 34

Information was seen as vitally important as it enabled and mediated older patients’ interactions with the health-care system.22 25 28 34 48 49 Participants expressed satisfaction with the information they received from providers, partic-ularly when information was provided at important junc-tures in their care journey, and was followed up promptly and consistently.34 40 49 Having a care plan on record, and having knowledge of its contents and updates, was associ-ated with more positive patient experiences, particularly in terms of feeling involved in healthcare decision- making and care processes.48 49 Patients disliked having to ‘repeat their story’ to multiple providers—this was cited as a main reason for wanting to see a familiar healthcare provider.47 Participants appreciated when providers informed them of other available services to which they might be entitled, as well as information about how to manage financially.49 Participants additionally desired information that could help them comprehend and prepare for the impacts of their health conditions on other aspects of their life.

Participants’ preferences regarding sources of informa-tion were inconsistent.22 34 Some participants preferred contact with specialists due to their expertise and prior negative experiences of family doctors providing insuf-ficient information to address their health concerns. A majority of participants, however, preferred to receive information from a primary care provider, such as a GP, in the first instance. Nurses were identified as a valued infor-mation source due to their perceived capacity to provide extensive and comprehensible information.34 Supple-mentary (usually written) information was appreciated, and was seen as particularly useful when the presence of multimorbidity increased the complexity of developing, understanding and executing care plans.21 Participants felt it was important to be able to view their health records at any time in order to determine who to share this infor-mation with and correct any misinformation.49

Problems related to information sharing and transfer were discussed in seven articles.20 22 25 32 34 39 49 Participants felt that different providers across the primary–secondary care interface often had conflicting information about,

and opinions of, their care. Missing or conflicting infor-mation caused a great deal of uncertainty and confusion for patients and their caregivers. Relatedly, incomplete transfer and availability of relevant information to other healthcare providers was identified as a common inter-organisational and intraorganisational barrier that could lead to fragmented care, confusion or dissatisfaction.25 In hospital, some participants experienced conflicting infor-mation about discharge and were unaware which ward staff (if any) were planning their discharge,20 sometimes due to the absence of a written discharge plan.39

Referral and care transitionsTransitions between services and care settings were gener-ally seen as significant points at which older patients were particularly susceptible to lapses or losses of conti-nuity.20 22 27 28 30 32 47–49 Timely and appropriate referral was therefore perceived to be essential; participants appreciated when their family doctor was able to mini-mise the time between referral and their first consulta-tion.22 30 48 Patients expected their primary care provider to be aware of their hospital treatment and be informed of the outcome of any investigations.47 The impacts of inappropriate referrals and/or poorly managed transi-tions were particularly apparent for patients with multi-morbidity who typically received care from multiple professionals/services at different stages of the illness trajectory. Patients identified timely availability of infor-mation, effective planning and communication as key elements of well- coordinated care, as they provided a tangible sense of ‘being handed over’ from one setting/service to another.47 A lack of clarity about who should be responsible for managing information was cited as a major reason for information being lost when patients and their personal information are transferred between settings.32 Patients in the same study felt that a sense of ‘diluted ownership’ of care delivery and outcomes caused them to disengage from the management of their own care, leading to losses of personal autonomy.

When participants were not referred to services promptly, they tended to presume that providers were unaware of those services.30 Inadequate promotion of services among providers and the public was identified as a possible reason for delayed referral or non- referral.30 When moving to a new service, participants desired to be: informed in advance where they were going and the name of their primary contact person; assured that information about their views and preferences, and any agreed care plan, was passed on in advance; and given the flexibility to continue to see, as appropriate, preferred healthcare professionals who knew them and their situation well.48 49 Participants stressed the need to preserve entitlements to care despite movements between services and across geographical boundaries.

Concern about waiting times during care transitions and referrals featured in six articles.20 22 25 32–34 49 Partic-ipants felt that minimising the length of waiting time during periods of transition was important, particularly in


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the hospital setting or when waiting for diagnostic inves-tigation,20 22 49 but expressed concerned about ‘being rushed’, particularly during periods of recovery or when facing significant decisions about their care and/or treat-ment.32 Participants from two studies recounted negative experiences of poor care coordination between providers and services, with some explaining that they had waited up to a year before seeing a specialist following referral from their GP.25 34 Lengthy wait periods caused feelings of uncertainty, frustration and abandonment, particularly if symptoms were perceived as worsening and/or beyond patients’ self- management abilities.21 22

Coordination and cooperationTwelve studies discussed the importance of coopera-tion, coordination and communication across organi-sations, between service providers and across types of care.20 22 25–27 30 34 38 45 46 48 49 Although participants gener-ally had minimal interest in institutional/organisational priorities regarding integrated care, they wanted profes-sionals and services to ‘work together as a team around the patient’.49 Divisions between primary, secondary and community care were regarded as relatively meaningless compared with patients’ overarching desire for high- quality care and continuity, regardless of the source and/or setting.49

Participants were generally satisfied with their care when: they were referred to services without difficulty34; interprofessional communication was perceptible and shared with the patient,49 and discharge processes were perceived as consultative and coordinated.20 However, the fragmented nature of the healthcare system became apparent to patients when they needed to contact multiple providers to coordinate care, errors occurred between care transitions, or when providers disagreed on necessary care and services.34 Coordination and cooper-ation was also discussed in relation to resources, patient rights and entitlements regarding support and financing across organisations and care settings.49

In cases where little teamwork was perceived, partici-pants tended to experience inappropriate, inefficient or inconsistent referrals, reduced motivation to comply with treatment and ineffective or inappropriate responses to emergent needs or unanticipated problems.25 26 34 45 Participants viewed serious communication breakdowns (eg, failure to record drug allergies) as unacceptable and damaging to their health.25 Patients living with severe illness and/or those with multiple health problems were seen as suffering most from insufficient interprofessional cooperation.34

Four studies identified a possible tension between increased specialty care use and primary care providers’ capacity to coordinate care.22 28 34 38 Some participants recounted that although communication between their primary care provider and specialist was evident around the time of referral and the initial specialist appointment, they were unsure whether ongoing communication and follow- up was occurring.22 28 Participants perceived that

visits to specialist care added further complexity to the care delivery process and presented opportunities for gaps in care coordination to occur.22

The appointment of a care coordinator, also referred to as a case manager, was proposed as a solution to poor access, follow- up and coordination between organisations, sites, or providers in six studies.34 36 37 44 47 49 Functions of care coordinators described by participants included: acting as a primary contact person and ‘main person’ responsible for patients’ care, particularly aged and frail patients with serious and chronic conditions; coordinating care and social services across different agencies within the health-care system; regularly contacting patients and their fami-lies; offering guidance about symptom management, and providing assistance with instrumental activities of daily life.34 47 49

dISCuSSIOnThis review highlights that older adults typically define their perspectives towards integrated care with respect to the relational, informational and organisational aspects of care. These aspects of care and types of continuity were considered to be important drivers and benchmarks of person- centred integrated care, and were central features of patients’ diverse narratives. Our findings concur with previous research exploring the semantic misalignments between patient and medical narratives and understand-ings of person- centred care coordination.9 51

enablers and barriers from the perspective of older patientsBased on our synthesis of patient perspectives, several enablers and barriers were identified. Key enablers included: access arrangements that reflect patient needs and preferences regarding which services to access, the speed of access and the methods of access,21 25 27–29 34 36 41 49 appropriate user- friendly technol-ogies,28 41 clear communication coupled with appropriate information,22 24 26–28 30 34 regular contact with a familiar, trusted healthcare provider,22–24 individualised care plan-ning with appropriate patient involvement in healthcare decision- making28 34 and systems to reduce gaps in infor-mation and to enable regular follow- up.22 28 34 36

Barriers to integrated care as defined by older adults included: unavailability of needed providers and services in certain areas/jurisdictions,28 34 49 lack of opportunities to clarify patients’ needs, priorities and preferences,22 27 34 including those related to patients’ information and/or communication,22 25 28 34 47–49 conflicting information, clinical advice, treatments and/or management,22 25 34 48 49 lengthy wait times,20 22 25 33 34 47 49 limited interprofessional or multidisciplinary teamwork25 26 34 45 47–49 and relational and informational discontinuity at the primary–secondary care interface.20 22 28 32 34 39 39 47–49

Defining the meaning of integrated care from the perspectives of different stakeholders, and reconciling those perspectives, poses considerable policy and research challenges.52 Structural and organisational- based


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definitions are well founded insofar as they are driven by the need to overcome sectoral fragmentation in health-care systems.53 However, such concerns are likely to be less important to patients than their smooth, seamless and supported journey through the care system.48 49 Organ-isationally based definitions can overshadow person- centred understandings of care integration, which are needed to guide the delivery of appropriate, coordinated and responsive care. Person- centred definitions based on patient experiences capture a fundamental principal of integrated care, and offer a cogent logic as to its key objectives and success measures.

Implications for implementation and knowledge translationOur findings suggest a need to better prepare and support providers across the healthcare system to deliver coor-dinated, efficient and appropriate person- centred care within a complex milieu. The successful implementation of integrated care into practice requires providers to inter-nalise the value of the principles of integrated care while being open to new ways of working within non- traditional models of care delivery.1 7 54 Implementing sustainable integrated care systems for older adults will require multi-pronged, transformative action at the clinical (eg, facil-itating shared decision- making and goal setting) service (eg, supporting the coordination of services delivered by multidisciplinary providers) and healthcare system (eg, strengthening governance, accountability systems and financing mechanisms enabling equitable access to services) levels.55 These actions should coincide with efforts to clarify or respecify discrete tasks, roles, and responsibilities, decision- making processes, and relevant clinical and patient- reported outcome and experience measures.

Care coordination with case management was iden-tified as a critical factor in facilitating communication among providers, assisting patients to implement their care plans and enhancing access across different parts of the healthcare system.34 36 37 44 47 49 Further research into the precise role and value of care coordinators and facili-tating technologies, among other elements, in integrated care models is needed.

limitationsThis is the first review to provide a comprehensive synthesis and a quality appraisal of the literature on older adults’ perspectives in relation to integrated care. The limitations of this review mainly relate to: (1) the lack of consistency in concepts, definitions and terminology used to describe ‘integrated care’—a majority of the studies did not provide a definition of integrated care and/or used conceptually similar terms pertinent to integrated care without offering a definition or rationale; and (2) the lack of a comparison of subgroups of older patients. We acknowledge that other terms pertaining to integrated care concepts and/or activities could have been included in the search strategy. However, due to the complexity of the field and the varying definitions of integrated care

used in the literature, our initial strategy aimed to iden-tify citations focusing explicitly on older patients’ experi-ences of their care journey within various integrated care models.

It is possible that the inclusiveness of this review, which included studies undertaken on different client groups and service areas within various healthcare settings, may have compromised the specificity of the findings. Our intention was not to address a specific question with narrow parameters about patients’ experiences to retro-spectively derive new models of care that fit with the WHO definition.7 Nor was our intention to refer to older persons’ perceptions and experiences to assess the effec-tiveness of different integration models from an organ-isational health system perspective. Such an approach would be inappropriate as most aspects of integrated care management and governance occur ‘behind the scenes’47 and are generally ‘invisible’ to patients. As we have seen, patient narratives are more likely to reflect the visible and tangible aspects of service delivery, and are mainly limited to concerns regarding quality and safety, relationships, and (dysfunctional) coordination. Rather, we aimed to synthesise the available literature on patient experiences as an informed stating point to inform the design, imple-mentation and evaluation of locally relevant approaches that are: (1) underpinned by a patient- centred and system- wide view of care integration; and (2) informed by the journeys of older patients as they move between providers and services and across organisational and/or programme boundaries.8 53 Given the need for health-care systems to embrace the flexibility, contingency and complexity that characterises integrated care,8 52 a broad and inclusive approach to understanding patients’ views and experiences is justified. Recognising that a ‘one- size- fits- all’ approach is unlikely to be appropriate when it comes to integrated care delivery,8 future studies could consider coproduction solutions and the application of interpretative approaches to examine what strategies work for which group of patients and under what circum-stances, that is, identifying whom, when, how and why.56

COnCluSIOnThis review highlights that older adults define their experiences of integrated care in relation to: accessi-bility—timely access to needed services, age- friendly infrastructure, equitable financing and accessible information; care—feeling respected, heard, involved, informed and cared for; and coordination—uninterrupted care delivered smoothly across settings and services, with clear roles, responsibilities and points of contact. These patient- reported concerns are not adequately represented in current operational definitions that focus primarily on integrated care from an organisational and management perspective. The review draws attention to the humanistic and experiential nature of integrated care experiences and suggests that different patient- centric indices may be needed to assess the quality of integrated


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care and to measure the key outcomes of importance to older patients and their carers. Future work on this topic is warranted and aligns with contemporary research and policy efforts55 57 focusing on developing integrated care programmes that improve patient care experiences while reconciling the inherent complexities and tensions involved.

twitter Michael T. Lawless @mt_lawless, Amy Marshall @DrAmyMarshall and Gillian Harvey @GillHar26

Contributors MMM conceptualised the review and developed the research protocol. MMM and AM conducted the initial database search and citation screening was performed by ML, MMM, AM and GH. ML developed the original draft of the manuscript. All authors were involved in the extraction and synthesis of the data and contributed to the drafting and editing of the manuscript. All authors approved the final manuscript prior to submission.

Funding Funding from The Hospital Research Foundation (THRF), Woodville, South Australia, which is supporting the research into improving the integration of care for older people.

Competing interests None declared.

Patient consent for publication Not required.

Provenance and peer review Not commissioned; externally peer reviewed.

data availability statement Data are available upon reasonable request. The data analysis plan outlined in the study protocol will be made available by the corresponding author immediately following publication.

Open access This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY- NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non- commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non- commercial. See: http:// creativecommons. org/ licenses/ by- nc/ 4. 0/.

OrCId idsMichael T. Lawless http:// orcid. org/ 0000- 0002- 2536- 6442Manasi Murthy Mittinty http:// orcid. org/ 0000- 0002- 2792- 2799

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