The needs of carers of people with multiple sclerosis: a literature review

THEORET ICAL STUD IES doi: 10.1111/j.1471-6712.2008.00645.x

The needs of carers of people with multiple sclerosis: aliterature review

Margarita Corry BNS, BSc, MSc, RNT, RGN (Lecturer)1 and Alison While PhD, Cert Ed, RGN, RHV (Professor)2

1Lecturer, School of Nursing & Midwifery, Trinity College, Dublin, Ireland, and 2Professor Community Nursing, King’s College London,

Florence Nightingale School of Nursing & Midwifery, London, UK

Scand J Caring Sci; 2009; 23; 569–588

The needs of carers of people with multiple sclerosis: a

literature review

People with multiple sclerosis depend heavily upon their

families and other informal carers as they receive limited

support from health-care professionals or health-care ser-

vices. Adopting the carer role results in a life-changing

experience, which may bring rewards and challenges to

the carer. This paper reviews the research addressing the

experiences of carers of people with multiple sclerosis

published between 2002 and 2007 building upon an earlier

review. The literature suggests that carers have needs

across various domains and that spouses/partners have

particular needs. Much of the evidence has limited

generalizibility although the geographical spread of the

evidence indicates considerable consistency of need. The

review describes ongoing carer needs which require sup-

portive care and provides the basis for the development

and testing of carer interventions for use by health-care

professionals.

Keywords: literature review, informal carers, multiple

sclerosis, spouses, needs, experiences.

Submitted 1 February 2008, Accepted 21 May 2008

Introduction

Multiple sclerosis (MS) is a progressive degenerative

neurological disease of unknown cause with a variety of

neurologically distressing symptoms (1), which results in

life-changing experiences for both the person with MS

(PwMS) and his carer. Carers provide much of the every-

day support for the PwMS contributing substantially to

their on-going care and well being (2). Since the 1990s, the

needs of the carers has been identified as requiring support

(3); however, resources are frequently limited reflecting

the low prevalence of the disorder, the low profile of carer

support within health-care provision and the increasing

pressure on health and social care budgets.

Informal carers are carers: ‘who are not financially

compensated for their services’ (4: 946) and may be cate-

gorized as primary or secondary carers although there is

inconsistency in the use of these terms. For example, pri-

mary carers may be spouses (5) or those (not necessarily

spouses) dedicating a minimum of 1 hour each day to the

care of a PwMS (6). Secondary carers are those with whom

the primary carer would feel comfortable leaving the per-

son with for short periods of time (5). Generally, the pri-

mary carer is someone who spends a substantial amount of

time providing care, while a secondary carer provides short

periods of relief for the primary carer. In this review, the

term carer is used to denote informal carers and spousal

carer to denote informal carers who are spouses/partners.

A number of factors have been identified as contributing

to the care burden, including: the severity of impairment

of the PwMS; age and health of the carer; availability of

support; and perceived uncertainty (7–10). In a systematic

review of the needs and experiences of carers of PwMS,

McKeown et al. (3) highlighted that carers experience a

decrease in their quality of life (QOL), deficits in their

physical health, impaired psychological well being and

social life, and an adverse effect upon their financial situ-

ation. Decreased QOL was found to be associated with age

(between 50 and 59 years), having a low family income,

being a spouse, the duration and daily frequency of caring,

increased severity of MS symptoms and having an unstable

disease course. Although a causal link could not be

established between caring and physical health deficits

owing to the impact of the normal ageing process and pre-

existing health problems, the most commonly reported

physical deficit was arthritis. However, carer health was

found to be a critical factor in enabling them to continue

providing care. The psychological effect of caring was de-

scribed as ‘chronic sorrow’ and stress was a major factor

with carers reporting more stress symptoms than the

Correspondence to:

Magarita Corry, School of Nursing & Midwifery, Trinity College

Dublin, 24 D’Olier Street, Dublin 2, Ireland.

E-mail: [email protected]

� 2008 The Authors. Journal compilation � 2008 Nordic College of Caring Science 569

general population. Restrictions on carers’ ability to attend

recreational and social activities, holidays, telephone

contacts, and visit friends, all impacted negatively on their

social lives. The financial situation of carers was found to

worsen with the number of years of caring.

Informal caring has gradually received greater recogni-

tion as a major component of community care (11). The

growing dependence upon carers for care delivery in the

wake of budgetary constraints requires that health-care

professionals recognize the negative impact of caring and

provide interventions to sustain carer well being. This re-

view builds upon McKeown et al.’s (3) earlier work to

provide a comprehensive synthesis of current knowledge

to inform professional practice.

Method

Search strategy

A computer-based literature search was conducted using

the following search terms:

‘Multiple sclerosis and needs assessment’; ‘Multiple

sclerosis and needs assessment and carer’; ‘Multiple scle-

rosis and carer’; ‘Multiple sclerosis and carers’; ‘Multiple

sclerosis and caregiver’; ‘Multiple sclerosis and caregivers’;

‘Multiple sclerosis and informal caregivers’; ‘Multiple

sclerosis and informal caregiver’; ‘Multiple sclerosis and

support systems’; ‘Multiple sclerosis and carers’ needs’;

‘Multiple sclerosis and caregiver burden’; ‘Multiple scle-

rosis and caregiver burden and needs assessment’; ‘Multi-

ple sclerosis and caregiver support’; ‘Multiple sclerosis and

caregiver support and needs assessment’ and ‘Multiple

Sclerosis and caring’. Amed, British Nursing Index, CI-

NAHL (thesaurus and exploded), Psychlit, Pubmed (MeSH

database) and Social Science index databases limited to

English language and peer-reviewed articles from May

2002 to November 2007 were searched yielding 412 hits,

including duplicates.

Selection criteria

The inclusion criteria were: primary research which fo-

cussed on adult carers and/or included and reported findings

on the experiences of adult carers’ of PwMS written in

English, published in peer-reviewed journals between May

2002 and November 2007. Papers not meeting these criteria

were excluded from the review. Full texts of all identified

studies were reviewed against the inclusion critera. Thirty-

three papers were identified as relevant for inclusion in the

review. (Not relevant n = 169; duplicates n = 210.) The

quality of the quantitative papers varied with sample sizes

ranging from 13 to 445 and response rates from 19% to

100% or unreported (n = 8 papers). However, owing to the

limited number of studies available, all quantitative papers

that fulfilled the inclusion criteria were included. The

qualitative papers included had sample sizes ranging from 2

to 17. The studies were of varying rigour.

Data analysis

Data were extracted from all the studies and a thematic

content analysis conducted in light of the diversity of the

study foci and measures which precluded any quantitative

analysis. The themes were not imposed but allowed to

emerge from the study findings. They were identified by

the first author initially and validated by the second author.

Results

Tables 1 and 2 provide a summary of the papers; 21 papers

focussed upon carers generally, while 12 focussed upon

spouses as carers. The term spouse is used interchangeably

with partner; the term spouse will be used in this paper.

The research was conducted in 11 countries (Australia

n = 10; England n = 6; United States n = 4; Canada n = 2;

Italy n = 2; Netherlands n = 4; Norway n = 1; Spain n = 1;

Sweden n = 1; Ireland n = 1; Netherlands and Belgium

n = 1). Although there are areas of consistency between

nonspousal and spousal carers, marital satisfaction was

unique to the studies relating to spouses

Carer studies

The carer studies examined the following areas: utilization

of health-care resources by PwMS and their carers and

satisfaction with those resources (11–15); caring activities,

burden and coping strategies (6, 14, 16–21); psycho-social

and physical health and QOL (14, 17, 21–29) and the po-

tential rewards of caring to PwMS (30). All the studies had

a descriptive design (19 surveys and two qualitative stud-

ies) and revealed consistent evidence of the need for re-

sources and services to relieve carer burden. Three themes

emerged from the studies, namely the impact of caring, the

services available and gender differences.

The impact of caring

Four sub-themes emerged regarding the impact of caring:

the psychological and emotional impact of caring, the

impact of disease characteristics on carers, carer burden

and the benefits of caring.

Psychological and emotional impact of caring. The impact of

caring was evident in the carers’ psychological needs, their

levels of stress and distress together with the high level of

activities undertaken and the burden experienced. Psycho-

logical needs constituted the highest number of needs in

the survey of carers of PwMS conducted by Benbow and

Koopman (23), where the sample reported the need to be

listened to and heard by others together with the need for

� 2008 The Authors. Journal compilation � 2008 Nordic College of Caring Science

570 M. Corry, A. While

Tab

le1

Su

mm

ary

of

stu

die

sre

gard

ing

non

pro

fess

ion

al

care

rsof

people

wit

hm

ult

iple

scle

rosi

s(P

wM

S)

Code

study

Study

des

ign,

sam

ple

,/m

ethods

&in

stru

men

tsK

eyfindin

gs

Com

men

ts

Ben

bow

&K

oopm

an2003

(23)

Can

ada

Surv

ey

Sam

ple

:ra

ndom

Car

ers

(n¼

240;

resp

onse

rate

48%

)

75-ite

mques

tionnai

re,w

hic

hin

cluded

ques

tions

on

dem

ogra

phic

s

Psyc

holo

gic

alnee

ds

wer

era

nke

das

import

ant

by

allca

rers

and

fell

into

thre

e

cate

gories

:

Gen

eral

psy

cholo

gic

alsu

pport

Those

rela

ted

tosp

ecifi

cre

sourc

enee

ds

Those

rela

ted

toin

tera

ctio

nw

ith

the

med

ical

com

munity

Ala

rge

dat

ase

t

DeJ

ubic

ibus

and

McC

abe

2005

(29)

Aust

ralia

Qual

itat

ive

study

Sam

ple

:non-r

andom

Rel

ativ

es

(n=

11,

resp

onse

rate

:not

report

ed,

par

tner

s

n=

5,

moth

ern

=1,

child

ren

n=

4)

Sem

i-st

ruct

ure

din

terv

iew

Part

ner

sex

per

ience

dec

onom

icst

ress

and

stre

ssin

rela

tionsh

ips.

One

par

tner

report

edth

atec

onom

icst

ress

ow

ing

toth

ePw

MS

lead

toce

asin

gem

plo

ymen

t

pre

mat

ure

ly,

whic

hre

sulted

insi

gnifi

cant

hea

lth

pro

ble

ms.

Gre

ates

tfinan

cial

dis

tres

sw

asre

port

edby

low

-inco

me

fam

ilies

with

teen

age

child

ren

Finan

cial

chan

ges

cause

dst

ress

inre

lationsh

ipan

dro

lech

anges

.

Study

of

PwM

S,w

hic

hin

-

cluded

rela

tive

s

Figve

det

al.

2007

(26)

Norw

ay

Surv

ey

Sam

ple

:non-r

andom

Car

ers

(n=

76,

resp

onse

rate

82%

;sp

ouse

sn

=

55,

non-s

pouse

sn

=21)

Sem

i-st

ruct

ure

din

terv

iew

and

ques

tionnai

res

Rel

ativ

eSt

ress

Scal

e(R

SS)

(Fel

stei

net

al.

1975).

The

Neu

ropsy

chia

tric

Inve

nto

ry(N

PI)

Car

egiv

er

Dis

tres

sSc

ale.

Gen

eral

Hea

lth

Ques

tionnai

re(G

HQ

)qual

ity

of

life

12

item

vers

ion

Spouse

sre

port

edsi

gnifi

cantly

hig

her

leve

lsof

tota

lca

rer

dis

tres

san

dre

duct

ion

in

qual

ity

of

life

com

par

edw

ith

oth

ergro

ups.

Clo

sefr

iends

report

edle

ast

care

r

dis

tres

s.Si

gnifi

cant

corr

elat

ions

found

bet

wee

nth

esp

ouse

s’ca

rer

dis

tres

ssc

ales

and

mea

sure

sof

dis

abili

ty,dep

ress

ion,co

gnitio

nan

dneu

ropsy

chia

tric

sym

pto

ms.

Psyc

hia

tric

sym

pto

ms

and

cognitiv

eim

pai

rmen

tin

PwM

Sw

ere

signifi

cantly

asso

ciat

edw

ith

care

rdis

tres

san

dqual

ity

of

life

ove

ran

dab

ove

the

effe

ctof

moto

rdis

abili

ty.

Stat

istica

llysi

gnifi

cant

asso

ciat

ions

bet

wee

nth

eN

PIto

talsc

ore

and

the

thre

e

rela

tive

stre

sssu

bsc

ales

and

the

GH

Qsc

ale.

Ast

udy

com

par

ing

spouse

s

and

oth

ers

Forb

eset

al.

2007

(21)

Engla

nd

Surv

ey,

3poin

ts(b

asel

ine,

12

month

s&

24

month

s)

Sam

ple

:non-r

andom

Car

ers

atbas

elin

e(n

=257,

resp

onse

rate

60%

at

bas

elin

e;sp

ouse

n=

227,

nonsp

ouse

(n=

30)

Car

ers

attim

e2

(n=

185,

resp

onse

rate

43%

)

Car

erac

tivi

ty(

a5-p

oin

tsc

ale

ina

range

of

care

activi

ties

:w

ashin

g,

eating

and

drinki

ng,

lifting

and

movi

ng,

toile

ting

and

dre

ssin

g)

Car

egiv

er’s

Rea

ctio

nA

sses

smen

tSc

ale

(CRA

)to

mea

sure

care

rburd

en

Short

Form

Gen

eral

Hea

lth

Surv

ey(S

F-36),

vers

ion

2.

(Jen

kinso

net

al.

1999

in21)

Lift

ing

and

movi

ng,

follo

wed

by

hel

pw

ith

dre

ssin

g,

was

hin

g,

eating

and

drinki

ng,

and

toile

ting,

wer

em

ost

freq

uen

tca

reac

tivi

ties

.G

reat

erdis

ease

impac

tw

as

asso

ciat

edw

ith

gre

ater

care

rac

tivi

ty,

whic

hin

crea

sed

ove

rtim

e.

Car

ers

caring

for

pat

ients

inth

em

oder

ate

and

seve

redis

ease

impac

tgro

ups

had

signifi

cantly

poore

rSF

-36

(p=

0.0

03)

and

CRA

(p=

0.0

01)

score

s(e

xcep

tin

the

este

eman

dphys

ical

funct

ion

scal

es,

resp

ective

ly).

Ther

ew

asm

inim

alva

riat

ion

in

the

SF-3

6sc

ore

sove

rtim

e.Th

eco

mm

ones

tan

dse

vere

sthea

lth

pro

ble

ms

wer

e

anxi

ety,

tire

dnes

san

ddep

ress

ion.

Car

ers

per

ceiv

ed‘s

exual

and

rela

tionsh

ip

pro

ble

ms’

asm

ore

import

ant

than

PwM

S.Fe

mal

eca

rers

report

edgre

ater

burd

en

on

the

sched

ule

and

hea

lth

scal

esof

the

CRA

than

mal

eca

rers

.Th

ere

sults

show

edw

ors

enin

ghea

lth

and

incr

easi

ng

burd

enin

rela

tion

tohig

her

leve

lsof

care

activi

tyin

dep

enden

tof

the

effe

cts

of

dis

ease

impac

tan

dca

rer

age.

Both

care

burd

enan

dhea

lth

stat

us

wer

esi

gnifi

cant

inex

pla

inin

g39%

and

49%

of

the

varian

cein

the

CRA

and

hea

lth

pro

ble

mva

riab

les,

resp

ective

ly.

The

variab

les

that

contr

ibute

dm

ost

toca

reburd

enan

dhea

lth

stat

us

wer

edis

ease

impac

t,

dya

dic

hea

lth

and

care

rac

tivi

ty,

with

the

men

talhea

lth

com

ponen

tal

soco

n-

trib

uting

toth

ehea

lth

stat

us.

Larg

edat

ase

tw

ith

tim

e

dim

ensi

on


Carers of people with multiple sclerosis 571

Tab

le1

Continued

Code

study

Study

des

ign,

sam

ple

,/m

ethods

&in

stru

men

tsK

eyfindin

gs

Com

men

ts

Gott

ber

get

al.

2002

(12)

Swed

en

Surv

ey

Sam

ple

:non-r

andom

Car

ers

(n=

13;

resp

onse

rate

50%

;n

=9

com

ple

ted

the

sick

nes

sim

pac

tpro

file

;sp

ouse

n=

12,

nonsp

ouse

n=

1)

Stru

cture

dques

tionnai

res

The

Kat

zEx

tended

AD

Lin

dex

Swed

ish

vers

ion

of

the

sick

nes

sim

pac

tpro

file

(SIP

)

Am

ean

of

19

hours

per

wee

k(r

ange:

2–4

.5hours

)of

caring

rela

ted

toA

DL

of

PwM

SO

vera

llm

ean

SIP

score

was

2.6

%in

dic

atin

gm

odes

tsu

bje

ctiv

edys

func-

tion.

Pilo

tst

udy

Gro

om

etal

.2003

(22)

Engla

nd

Surv

ey

Sam

ple

:non-r

andom

Car

ers

(n=

27,re

sponse

rate

87%

;sp

ouse

n=

24,

nonsp

ouse

n=

8)

Stru

cture

din

terv

iew

adm

inis

tere

don

2occ

asio

ns

GH

Q-1

2

GH

Qm

edia

nsc

ore

sw

ere

11.0

0(1

2.3

–8.8

range)

and

9.0

0(r

ange

11.0

–0.0

)

indic

atin

gpoor

gen

eral

hea

lth

(44).

Are

lationsh

ipw

asfo

und

bet

wee

nG

HQ

-12

and

care

ras

sess

men

tof

PwM

S.

Test

edth

eva

lidity

and

reli-

abili

tyof

the

GH

Q

Khan

etal

.2006

(14)

Aust

ralia

Surv

ey

Sam

ple

:nonra

ndom

Car

ers

(n=

69;

resp

onse

rate

90%

)

Car

egiv

erst

rain

index

(CSI

)

Car

erper

ceiv

edburd

en,

usi

ng

the

visu

alan

alogue

scal

e(V

AS)

score

din

mm

along

a10-c

mlin

e

Tren

dof

more

care

rst

rain

with

incr

easi

ng

dis

abili

tyof

the

PwM

SSi

gnifi

cantly

incr

ease

dper

ceiv

edca

rer

burd

enw

ith

incr

easi

ng

dis

abili

tyof

the

PwM

S

(p<

0.0

1)

Khan

etal

.2007

(20)

Aust

ralia

Surv

ey

Sam

ple

:nonra

ndom

Car

ers

(n=

62,re

sponse

rate

89%

;sp

ouse

n=

44,

nonsp

ouse

n=

18)

Stru

cture

din

terv

iew

Car

egiv

erst

rain

index

(CSI

)to

tals

core

(Robin

son

1983).

CSI

rating

score

(O’B

rien

,1993)

Car

egiv

erse

lf-r

eport

edburd

en(S

RB).

Ass

essm

ent

of

qual

ity

of

life

(AQ

oL)

ques

tionnai

re.

12-ite

mm

odifi

edve

rsio

nof

the

gen

eral

self

effica

cysc

ale

ques

tionnai

re(G

SES)

39

(62%

)ca

rers

indic

ated

pre

fere

nce

for

incr

ease

inre

spite

serv

ices

espec

ially

hom

e-bas

edse

rvic

es.26

(42%

)ca

rers

had

score

s‡7

,in

dic

atin

gca

rer

stra

in.M

ost

care

rst

rain

rela

ted

toem

otional

adju

stm

ent

(59%

),oth

erdem

ands

on

care

rtim

e

(n=

53%

),ch

ange

inca

rer

per

sonal

pla

ns

(53%

),an

ddis

turb

edsl

eep

(51%

).

Car

ers

rate

dem

otional

adju

stm

ents

(24%

)an

dfa

mily

adju

stm

ents

ow

ing

todis

-

rupte

dro

utine

(19%

)as

causi

ng

seve

rest

rain

.

Stra

ined

care

rsw

ere

caring

for

the

PwM

Sw

ith

hig

her

leve

lsof

dep

ress

ion,an

xiet

y

and

stre

ss.

Ther

ew

asa

signifi

cant

corr

elat

ion

bet

wee

nst

ress

,an

xiet

yan

d

dep

ress

ion

inth

ePw

MS

and

the

CSI

rating

score

san

dca

rer

SRB.

Stra

ined

care

rs

had

signifi

cantly

wors

esc

ore

son

the

AQ

OL

soci

alre

lationsh

ips

scal

e,an

dw

ere

care

rsof

the

PwM

Sw

ith

wors

esc

ore

son

the

AQ

oL

scal

esfo

rin

dep

enden

tliv

ing,

psy

cholo

gic

alw

ellbei

ng

and

tota

lA

QO

Lsc

ore

s.

No

rela

tionsh

ipw

asfo

und

bet

wee

nca

rer

stra

inan

dca

rer

or

the

PwM

Sse

lf-

effica

cysc

ore

s.

Aca

rer

was

defi

ned

asa

per

-

son

who

lives

with

the

PwM

San

dpro

vides

them

‘with

the

most

care

and

assi

stan

ce’



Tab

le1

Continued

Code

study

Study

des

ign,

sam

ple

,/m

ethods

&in

stru

men

tsK

eyfindin

gs

Com

men

ts

Krist

janso

net

al.

2005

(13)

Aust

ralia

Surv

ey

Sam

ple

:ra

ndom

Car

ers

(n=

373,

resp

onse

rate

19%

)of

peo

ple

with

ara

nge

of

neu

rolo

gic

alco

nditio

ns

(MS,

PD

and

HD

)of

whom

n=

71

wer

eca

rers

of

PwM

S

Self-a

dm

inis

tere

dpost

alques

tionnai

rein

cludin

g

dem

ogra

phic

dat

a,se

rvic

euse

,su

pport

nee

ds.

Fam

ilysa

tisf

action

with

care

(FA

MC

ARE)

scal

e

(Krist

janso

n1993)

Two-ite

mQ

OL

Index

GH

Q

On

aver

age

care

rshad

pro

vided

care

for

9.5

year

san

duse

dth

efo

llow

ing

serv

ices

:

67%

use

d3

pie

ces

of

equip

men

tan

d33%

use

dm

ore

than

3pie

ces

of

equip

-

men

t.33%

had

mad

ehom

ead

just

men

t,35%

wer

ere

ceiv

ing

rehab

ilita

tion

serv

ices

and

32%

hom

eca

re.5%

wer

ere

ceiv

ing

pal

liative

care

serv

ices

.Th

enee

d

for

ara

nge

of

hel

pw

asre

port

ed.

Most

import

ant

support

serv

ices

wer

e:hav

ing

equip

men

tfo

rdai

lyliv

ing,in

form

atio

nab

out

the

dis

ease

and

how

topro

vide

care

and

finan

cial

assi

stan

ce.

FAM

CA

RE

score

sfo

rca

rers

of

PwM

Sin

dic

ated

low

est

satisf

action

amongst

the

gro

ups

Car

ers’

QO

Lw

as5.5

(SD

2.3

6),

and

satisf

action

with

QO

Lw

as5.6

1(S

D2.4

4),

whic

his

the

aver

age

score

for

both

subsc

ales

(Krist

janse

net

al.

2005).

The

ove

rall

mea

ns

score

was

0.7

9in

dic

atin

gve

rylo

w

dys

funct

ion.

How

ever

,a

quar

ter

of

care

rshad

pro

ble

ms

‘rat

her

more

than

usu

alan

dm

uch

more

than

usu

al’.

Mix

edsa

mple

of

neu

rolo

gic

al

dis

ord

ers

McK

eow

net

al.

2004

(3)

UK

&Irel

and

Phen

om

enolo

gic

alst

udy

Sam

ple

:nonra

ndom

Car

ers

(n=

16;

spouse

n=

12,

nonsp

ouse

n=

5)

Focu

sgro

up

inte

rvie

ws

(n=

4)

The

conce

pt

of

‘support

’co

mprise

dan

import

ant

par

tof

the

care

rs’

exper

ience

s.

Exper

ience

sof

support

and

feel

ings

about

support

chan

ged

ove

rtim

e.

The

four

phas

esex

per

ience

din

rela

tion

tosu

pport

wer

e:re

ject

ing,

resi

stin

g,

seek

ing

and

acce

pting.

The

findin

gs

hig

hlig

ht

the

com

ple

xity

of

issu

essu

r-

roundin

ga

care

r’s

dec

isio

n

tose

ekan

dac

cept

support

Mora

les-

Gonza

les

etal

.

2004

(16)

Spai

n

Surv

ey

Sam

ple

:nonra

ndom

Ongoin

glo

ngitudin

alst

udy

usi

ng

quan

tita

tive

and

qual

itat

ive

met

hodolo

gie

s

Car

ers

(n=

91,

resp

onse

rate

100%

,sp

ouse

n=

49,

nonsp

ouse

n=

41)

1fo

cus

gro

up

(n=

1)

with

care

rs(n

=10)

The

emotional

burd

enex

per

ience

dby

care

rsw

asre

late

dto

pat

ients

’phys

ical

dis

-

abili

ty.C

arin

gim

pac

ted

upon

care

rs’lif

ew

ith

lack

of

support

&th

eat

titu

de

of

the

PwM

Sad

din

gto

the

burd

en

Part

of

ala

rger

study

Oth

er

pap

er:

Riv

era-

Nai

rarr

oet

al.

2003

(6).

O’

Har

aet

al.

2004

(11)

Engla

nd

Surv

ey

Sam

ple

:non-r

andom

161

PwM

S(r

esponse

rate

61%

)

Stan

dar

dday

dep

enden

cyre

cord

(O’H

ara

etal

.

2004)

80%

of

the

PwM

Sw

ere

assi

sted

by

fam

ilyra

ther

than

hea

lth

or

soci

alse

rvic

e

pro

fess

ional

s,fr

iends

and

nei

ghbours

,or

oth

erpeo

ple

.A

ssis

tance

was

required

on

aver

age

2tim

esa

day

.C

arer

sw

ere

required

topro

vide

assi

stan

cew

ith

per

-

sonal

care

and

mobili

tyon

aver

age

once

per

day

.A

subgro

up

of

the

PwM

S

required

assi

stan

cefive

or

more

tim

esw

ith

per

sonal

care

and

mobili

tybut

wer

e

not

visi

ted

by

hea

lth

pro

fess

ional

s

Although

the

surv

eyin

stru

-

men

tsw

ere

com

ple

ted

by

PwM

S,it

pro

vides

valu

able

info

rmat

ion

on

the

role

of

care

rs.



Tab

le1

Continued

Code

study

Study

des

ign,

sam

ple

,/m

ethods

&in

stru

men

tsK

eyfindin

gs

Com

men

ts

Pake

nham

2005

(30)

Aust

ralia

Surv

ey

Sam

ple

:nonra

ndom

Car

ers

(n=

222,

48%

of

the

popula

tion

attim

e1

and

155

care

rsat

tim

e2

(att

rition

rate

of

30%

,re

sponse

rate

:unkn

ow

n),

spouse

(79%

,)nonsp

ouse

(21%

)

Brief

sym

pto

min

vento

ry-1

8to

mea

sure

dis

tres

s

Aff

ect

bal

ance

scal

e(a

5-ite

msa

tisf

action

with

life

subsc

ale)

and

the

satisf

action

with

life

scal

e.

Seve

n-ite

mab

bre

viat

edSp

anie

rdya

dic

adju

stm

ent

scal

e.

Seve

n-ite

mab

bre

viat

edSp

anie

rdya

dic

adju

stm

ent

scal

e(S

har

ple

yet

al.

1984)

Stre

ssap

pra

isal

7-p

oin

tra

ting

scal

e

19-ite

mben

efit

findin

gsu

bsc

ale

(BFS

).Th

issc

ale

com

prise

dof

two

fact

ors

:per

sonal

,an

dfa

mily

rela

tions

gro

wth

fact

or

and

one

open

-ended

ben

efit

findin

gques

tion

Unst

ruct

ure

din

terv

iew

with

47

care

rson

caring-r

elat

edpro

ble

ms

inth

ela

stm

onth

Hig

her

care

rdis

tres

san

dlo

wer

dya

dic

adju

stm

ent

was

found

tobe

rela

ted

toth

e

care

reci

pie

nt’

sag

e.C

arer

s’sa

tisf

action

leve

lwas

rela

ted

toill

nes

sva

riab

les,

with

gre

ater

satisf

action

when

caring

for

aper

son

with

rela

psi

ng

rem

itting

MS

than

when

caring

for

aper

son

with

chro

nic

pro

gre

ssiv

eM

SC

arer

s’glo

bal

dis

tres

sw

as

rela

ted

toth

etim

esi

nce

sym

pto

monse

t(r

=0.1

7,

p<

0.5

).H

igher

stre

ssap

-

pra

isal

rela

ted

tohig

her

dis

tres

san

dlo

wer

life

satisf

action.

47

(20%

)ca

rers

re-

port

edad

ditio

nal

ben

efits

toth

ose

liste

din

the

BFS

:st

rength

ened

rela

tionsh

ips

(30%

,n

=14);

incr

ease

din

sight

into

illnes

san

dhar

dsh

ip30%

(n=

14);

per

sonal

gro

wth

(11%

,n

=5);

ach

ange

inlif

epriorities

and

per

sonal

goal

s(1

1%

,n

=5);

incr

ease

dap

pre

ciat

ion

of

life

(9%

,n

=4);

caring

gai

ns

[per

sonal

gro

wth

,th

e

stre

ngth

enin

gof

rela

tionsh

ips

(9%

,n

=4)]

;an

dhea

lth

gai

ns

(7%

,n

=3).

Life

satisf

action

of

the

care

reci

pie

nts

was

the

stro

nges

tan

dm

ost

consi

sten

tpre

dic

tor

of

both

posi

tive

and

neg

ativ

eoutc

om

esex

cept

ben

efit

findin

g.

Four

mai

n

pro

ble

mgro

upin

gs

emer

ged

:phys

ical

care

pro

ble

ms

(e.g

.m

anag

ing

det

erio

rating

phys

ical

sym

pto

ms,

53%

),psy

cholo

gic

alan

dem

otional

conce

rns

(e.g

.co

nce

rns

about

the

futu

rean

dhel

ple

ssnes

s,38%

),pra

ctic

alpro

ble

ms

(e.g

.finan

cial

diffi-

cultie

s,26%

)an

dre

lationsh

ippro

ble

ms

(e.g

.lo

ssof

intim

acy,

19%

).M

any

par

-

tici

pan

tsre

port

edm

ultip

lem

ain

pro

ble

ms

within

and

acro

ssth

eca

tegories

.

LLa

rge

dat

ase

tRep

ort

s

on

dat

aco

llect

edfr

om

a

larg

ersh

ort

-ter

mpro

-

spec

tive

study

Res

earc

h-

ers

concl

ude

that

the

care

ris

anap

pro

priat

e

and

indep

enden

tta

rget

for

more

focu

ssed

ther

-

apeu

tic

stra

tegie

s.Th

e

resu

lts

sugges

ta

com

-

munal

sear

chfo

rm

ean-

ing

bet

wee

nca

rers

and

care

reci

pie

nts

asben

efit

findin

gw

asco

rrel

ated

bet

wee

nca

rere

cipie

nts

and

care

rsin

allar

eas

exce

pt

fam

ilyre

lations

gro

wth

Pake

nham

2005

(17)

Aust

ralia

Surv

eyusi

ng

apro

spec

tive

des

ign

Sam

ple

:nonra

ndom

Car

ers

(n=

222,

48%

of

the

popula

tion

attim

e1

and

155

care

rsat

tim

e2

(att

rition

rate

of

30%

),

spouse

=87%

nonsp

ouse

=13%

,re

sponse

rate

:

unkn

ow

n

Ques

tionnai

res

2poin

ts(b

asel

ine

and

3m

onth

s),

incl

udin

g

dem

ogra

phic

s,ca

ring

conte

xt,

illnes

s

Bra

dburn

affe

ctbal

ance

scal

e(B

radburn

1969)

(mea

suring

posi

tive

affe

ct)

Satisf

action

with

life

scal

e(P

avot

and

Die

ner

1993)

19-ite

mben

efit

findin

gsc

ale

(Mohr

etal

.1999)

Brief

sym

pto

min

vento

ry-1

8to

mea

sure

dep

ress

ion

(Der

ogat

is2000)

Copin

gw

ith

MS

care

giv

ing

inve

nto

ry(P

aken

ham

2002)

The

old

erth

eca

rere

cipie

nt

(r=

0.3

1,p

<0.0

00)or

the

care

r(r

=0.2

6,p

<0.0

00),

the

more

likel

yth

eca

rer

relie

don

pra

ctic

alas

sist

ance

copin

gat

tim

es1

and

2.

The

old

erth

eca

rere

cipie

nt

the

more

likel

yth

eca

rer

was

tore

port

hig

her

anxi

ety

(r=

0.2

0,

p<

0.0

1).

The

more

pro

ble

ms

iden

tified

by

care

rsth

ehig

her

the

dis

-

tres

san

dlo

wer

posi

tive

affe

ct.

The

care

-rec

ipie

nt

life

satisf

action

was

the

stro

nges

tco

rrel

ate

of

care

rad

just

men

t.St

ress

appra

isal

sw

ere

posi

tive

lyre

late

d

todep

ress

ion

and

anxi

ety,

inve

rsel

yre

late

dto

life

satisf

action.

Posi

tive

refr

amin

g

was

posi

tive

lyre

late

dto

ben

efits

and

unre

late

dto

alloth

erdep

enden

tva

riab

les.

Tim

esi

nce

dia

gnosi

sw

asco

rrel

ated

with

ben

efit

findin

g(r

=0.2

2,

p<

0.0

1).

Car

ere

cipie

nt

life

satisf

action

was

inve

rsel

yre

late

dto

care

rdep

ress

ion

and

anxi

ety

and

posi

tive

lyre

late

dto

care

rlif

esa

tisf

action

and

posi

tive

affe

ct.

Avo

idan

cew

asposi

tive

lyco

rrel

ated

with

dep

ress

ion,

anxi

ety

and

ben

efits

and

neg

ativ

ely

corr

elat

edw

ith

satisf

action.

Prac

tica

las

sist

ance

copin

gw

ere

posi

tive

ly

asso

ciat

edw

ith

dep

ress

ion,

anxi

ety

and

ben

efit

findin

g.

Critici

sman

dco

erci

on

copin

gw

ere

posi

tive

lyre

late

dto

dep

ress

ion

and

anxi

ety.

The

findin

gs

support

the

role

of

care

-rec

ipie

nt

char

acte

rist

ics

and

ca-

rers

’ap

pra

isal

and

cop-

ing

pro

cess

esin

shap

ing

both

posi

tive

and

neg

a-

tive

outc

om

es,

and

hav

e

the

pote

ntial

toin

form

inte

rven

tions

des

igned

topro

mote

wel

lbei

ng

in

care

rs.



Tab

le1

Continued

Code

study

Study

des

ign,

sam

ple

,/m

ethods

&in

stru

men

tsK

eyfindin

gs

Com

men

ts

Pake

nham

2007

(18)

Aust

ralia

Longitudin

alsu

rvey

Sam

ple

:nonra

ndom

Car

ers

(n=

220,

resp

onse

rate

=53%

of

the

popula

tion;

spouse

=87%

,nonsp

ouse

=13%

resp

onse

rate

:not

report

ed)

Ques

tionnai

res,

2tim

epoin

ts(b

asel

ine

and

12

month

s)

Car

egiv

erco

nte

xtva

riab

leques

tionnai

re

Car

egiv

erap

pra

isal

usi

ng

thre

eap

pra

isal

dim

ensi

ons:

stre

ss,

chal

lenge

and

contr

ol

appra

isal

s(1

8).

26-ite

mca

regiv

ing

task

sca

regiv

ing

task

inM

S

scal

e(C

TiM

SS)

Car

egiv

erad

just

men

toutc

om

es(li

fesa

tisf

action,

posi

tive

stat

esof

min

d,

anxi

ety,

dep

ress

ion

and

ben

efit

findin

g)

wer

eas

sess

ed

The

posi

tive

stat

esof

min

dsc

ale

(PSO

M).

Sym

pto

m’s

chec

klis

t-90

tom

easu

redep

ress

ion

and

anxi

ety.

55-ite

mben

efit

findin

gin

MS

care

giv

ing

(BFi

MSC

are)

scal

e.5-ite

msa

tisf

action

with

life

scal

e

Mea

ndura

tion

of

caring

was

9.1

7ye

ars.

Most

care

rs(7

9%

)w

ere

spouse

s.M

ost

91%

lived

with

the

care

-rec

ipie

nt

and

the

maj

ority

(96%

)had

dai

lyco

nta

ct

with

them

.1/3

report

edth

atca

ring

pre

vente

dth

emfr

om

taki

ng

on

outs

ide

emplo

ymen

t.Th

em

ain

care

rpro

ble

ms

wer

e:psy

cholo

gic

alan

dem

otional

conce

rns

(e.g

.hel

ple

ssnes

s,em

otional

stra

in,

64%

);pra

ctic

alpro

ble

ms

(e.g

.

tim

esc

hed

ulin

gdifficu

ltie

s,lim

ited

finan

ces

49%

);re

strict

ions

(e.g

.not

able

toobta

inem

plo

ymen

t,lim

ited

soci

aliz

ing,

28%

);re

lationsh

ippro

ble

ms

(e.g

.

conflic

tw

ith

care

reci

pie

nt,

loss

of

com

pan

ionsh

ip,

23%

);re

cipie

nt’

spsy

-

cholo

gic

alan

dem

otional

pro

ble

ms

(e.g

.m

ood

swin

gs,

per

sonal

ity

chan

ges

,

21%

),ca

rere

cipie

nt’

sM

Ssy

mpto

ms

(e.g

.m

anag

ing

det

erio

rating

MS

sym

pto

ms,

lack

of

mobili

ty,

18%

);an

dca

rer’

shea

lth

pro

ble

ms

(e.g

.fa

tigue,

slee

pdifficu

ltie

s,9%

).

Gre

ater

caring

dura

tion

was

rela

ted

tohig

her

leve

lsof

caring

inth

edom

ains

of

inst

rum

enta

lcar

ean

dac

tivi

ties

of

dai

lyliv

ing

(AD

L)ca

rean

din

ove

rall

care

.

Hig

her

care

reci

pie

nt

age

was

rela

ted

tohig

her

care

rsc

ore

son

the

inst

ru-

men

talca

rean

dso

cial

-pra

ctic

alca

refa

ctors

.

Hig

her

stre

ssap

pra

isal

sw

ere

rela

ted

tohig

her

score

son

all(C

TiM

SS)

fact

ors

and

tota

lsc

ale.

Car

ers’

score

dhig

her

on

allC

TiM

SSfa

ctors

(exc

ept

with

psy

cho-e

motional

care

and

illnes

sdura

tion)

when

the

care

reci

pie

nt

exper

ience

dlo

wer

AD

Lse

lfca

re,

gre

ater

illnes

sdura

tion,

cognitiv

edefi

cits

and

MS

sym

pto

ms.

Hig

her

dep

ress

ion

inPw

MS

was

rela

ted

tohig

her

care

rsc

ore

son

the

CTi

MSS

tota

lsc

ale

and

allfa

ctors

exce

pt

inst

rum

enta

lca

re.

Hig

her

care

reci

pie

nt

anxi

ety

was

rela

ted

tohig

her

care

rsc

ore

son

psy

cho-e

motional

care

.H

igher

AD

Lca

resc

ore

sw

ere

rela

ted

tolo

wer

PSO

Man

dlif

esa

tisf

action.

Psyc

ho-e

motional

care

was

rela

ted

toca

rer

dep

ress

ion.

Hig

her

soci

al-p

ract

ical

care

score

sw

ere

linke

dto

low

erlif

esa

tisf

action

and

hig

her

ben

efit

findin

g,

Only

the

asso

ciat

ion

with

ben

efit

findin

gre

mai

ned

signifi

cant

when

tim

e1

adju

stm

ent

was

contr

olle

dfo

r.H

igher

score

son

the

tota

lsca

lew

ere

rela

ted

to

low

erPS

OM

and

life

satisf

action

and

gre

ater

ben

efit

findin

g

Although

anum

ber

of

sig-

nifi

cant

asso

ciat

ions

wer

e

found

bet

wee

nC

TiM

SS

fact

ors

and

care

rad

just

-

men

t,m

ost

wer

eof

are

la-

tive

lylo

wm

agnitude

rangin

gfr

om

0.1

5to

0.3

3.



Tab

le1

Continued

Code

study

Study

des

ign,

sam

ple

,/m

ethods

&in

stru

men

tsK

eyfindin

gs

Com

men

ts

Pack

enham

2007

(19)

Aust

ralia

Surv

ey

Sam

ple

:nonra

ndom

Car

ers

(n=

220,

resp

onse

rate

,95%

;

spouse

=87%

,nonsp

ouse

=13%

)

Post

alques

tionnai

res

Ques

tionnai

redet

erm

inin

gth

eca

ring

conte

xt

variab

les

Ques

tionnai

reex

plo

ring

‘rel

igio

us-

spiritual

bel

ief’

Ques

tionnai

redet

erm

inin

g‘s

ense

mak

ing’

Posi

tive

stat

esof

min

dsc

ale

(PSO

MS)

5-ite

msa

tisf

action

with

life

scal

e

Sym

pto

mch

eckl

ist-

90

(SC

L-90)

Car

ers’

relig

ious-

spiritual

bel

ief

was

signifi

cantly

corr

elat

edw

ith

sense

mak

ing

[r(1

73)

=-0

.17,

p<

0.0

5].

More

care

rsw

ho

had

are

ligio

us-

spiritual

bel

ief

(56%

)re

port

edse

nse

mak

ing

than

care

rsw

ho

did

not

report

such

abel

ief

(44%

).

Car

erse

nse

mak

ing

was

rela

ted

tohig

her

care

ran

dca

rere

cipie

nt

life

satisf

action.

The

hig

her

the

num

ber

of

sym

pto

ms,

the

low

erca

rer

satisf

action.

Patt

iet

al.

2007

(27)

Ital

y

Cro

ss-s

ectional

surv

ey

Sam

ple

:nonra

ndom

Car

ers

[n=

445,

resp

onse

rate

uncl

ear

(1%

inco

mple

tedat

a,5%

not

incl

uded

inan

alys

is);

spouse

n=

310,

nonsp

ouse

n=

134]

Self-a

dm

inis

tere

dques

tionnai

res

36-ite

msh

ort

-form

(SF-

36)

hea

lth

surv

ey.

The

care

rshad

signifi

cantly

low

erSF

-36

score

sth

ana

norm

ativ

esa

mple

exce

pt

for

phys

ical

funct

ionin

g.

The

mag

nitude

of

QO

Ldet

erio

ration

among

care

rsw

assm

all.

Men

talhea

lth

was

most

affe

cted

,es

pec

ially

mal

es,

follo

wed

by

vita

lity

and

gen

eral

hea

lth

(p<

0.0

01).

Bodily

pai

n

was

slig

htly

hig

her

inca

rers

than

innorm

alsu

bje

cts

espec

ially

among

fem

ale

care

rs(p

<0.0

01).

Low

erphys

ical

funct

ionin

gof

PwM

Sw

ere

asso

ciat

edw

ith

low

erca

rer

score

son

allSF

-36

dim

ensi

ons

and

low

er

qual

ity

of

life

of

PwM

Sw

asas

soci

ated

with

low

erca

rer

soci

alfu

nc-

tionin

gsc

ore

s.A

ge

and

sex

wer

efo

und

tobe

the

mai

npre

dic

tors

of

care

rqual

ity

of

life.

Acc

ord

ing

toth

ere

sear

cher

s,

this

isth

efirs

tst

udy

hig

h-

lighting

the

mai

npre

dic

tors

of

MS

care

rs’

QO

L.

Pozz

illiet

al.

2004

(24)

Ital

y

Surv

ey

Sam

ple

:nonra

ndom

Car

ers

(n=

133;

spouse

=54%

,

nonsp

ouse

=46%

,re

sponse

rate

:not

report

ed)

Ques

tionnai

res

Dem

ogra

phic

ques

tionnai

re

Profile

of

mood

stat

es(P

OM

S)

Car

ers

report

edhig

her

rate

sof

dep

ress

ion

the

longer

the

per

son

care

d

for

had

multip

lesc

lero

sis.

Ther

ew

asa

signifi

cant

corr

elat

ion

bet

wee

n

the

neu

rolo

gic

alim

pai

rmen

t,le

velof

dis

abili

ty,

emotional

stat

ean

d

hea

lth

stat

us

of

pat

ients

and

care

rs’

dep

ress

ion

asm

easu

red

by

the

POM

Sdep

ress

ion

subsc

ale,

atbas

elin

ean

dat

1-y

ear

follo

wup.

A

wors

enin

gor

impro

vem

ent

inca

rers

’dep

ress

ion

ove

rth

est

udy

per

iod

was

signifi

cantly

asso

ciat

edw

ith

chan

ges

inth

epat

ient’

sdis

abili

ty.

A

corr

elat

ion

also

exis

ted

bet

wee

nch

anges

inth

ePO

MS

dep

ress

ion

subsc

ale

and

chan

ges

inth

epat

ient’

sm

enta

lhea

lth,so

cial

funct

ionin

g

and

role

emotional

stat

eas

mea

sure

dby

the

SF-3

6m

easu

re.

Bas

elin

edat

aof

RC

TTh

ere

-

sear

cher

sco

ncl

ude

that

the

findin

gs

sugges

tth

atth

e

care

ris

anap

pro

priat

ean

d

indep

enden

tta

rget

for

more

focu

sed

ther

apeu

tic

stra

tegie

s



Tab

le1

Continued

Code

study

Study

des

ign,

sam

ple

,/m

ethods

&in

stru

men

tsK

eyfindin

gs

Com

men

ts

Riv

era-

Nav

arro

etal

.2003

(6)

Engla

nd

Surv

ey

Sam

ple

:nonra

ndom

Car

ers

(n=

91,

resp

onse

rate

100%

,;sp

ouse

n=

49,

nonsp

ouse

n=

41)

Stru

cture

din

terv

iew

Ques

tionnai

reco

vering

soci

alan

ddem

ogra

phic

dat

a

Modifi

edSp

anis

hve

rsio

nof

Zarit

care

giv

erburd

en

inte

rvie

w.

A22-ite

msc

ale

asse

ssin

glif

esty

le,

emotional

,phys

ical

and

soci

alco

nse

quen

ces

of

caring.

Most

care

rsw

ere

spouse

s;m

ean

num

ber

of

year

sca

ring

was

7.6

+/-

5

year

s.

Mea

ndai

lytim

edev

ote

dto

care

by

prim

ary

care

rsw

as11.5

+/-

8.2

hours

;m

ost

care

rsw

ere

hel

ped

inth

eir

dai

lyta

sks

by

som

efa

mily

mem

ber

s;al

most

1/3

had

the

hel

pof

apro

fess

ional

(most

lyon

apai

d

bas

isbut

inso

me

case

spro

vided

by

the

city

counci

l,lo

calo

rre

gio

nal

auth

ority

).

49

(53.8

%)

report

edper

ceiv

edno

burd

en;

20

(22%

)re

port

edm

ild

burd

en;

22

(n=

24.2

%)

report

edse

vere

burd

en.

The

mai

nitem

that

de-

term

ined

MS

care

rburd

enw

ere:

the

num

ber

of

year

sof

caring

for

MS

pat

ients

;hours

spen

tby

care

rin

caring

for

MS

pat

ient;

mobili

tyof

PwM

S;gen

eral

conte

ntm

ent

of

PwM

S;th

inki

ng

and

fatigue

of

PwM

S;

fam

ily/s

oci

alw

ellbei

ng

of

PwM

S;ove

rall

funct

ional

asse

ssm

ent

of

PwM

S.

Aprim

ary

care

rw

asdefi

ned

asth

epro

xyw

ho

ded

icat

ed

am

inim

um

of

1hour

per

day

toth

eca

reof

anM

Spat

ient

The

rese

arch

ers

concl

uded

that

the

hea

lth

rela

ted

qual

ity

of

life

of

the

MS

pa-

tien

tis

rela

ted

toca

rers

’

burd

en

Sher

man

etal

.2007

(28)

USA

Surv

ey

Sam

ple

:nonra

ndom

Signifi

cant

oth

ers

(SO

)[n

=74,

resp

onse

rate

100%

;sp

ouse

:(n

=55)

nonsp

ouse

(n=

19)]

Ques

tionnai

res:

Patien

tco

mpet

ency

rating

scal

e(P

CRS)

–SO

report

regar

din

gth

eir

per

ceptions

of

the

pat

ients

’fu

nct

ional

abili

ties

.

SF-1

2hea

lth

surv

ey(W

are

etal

.1996).

Neu

ropsy

cholo

gy

beh

avio

ur

and

affe

ctpro

file

-

signifi

cant-

oth

erfo

rm(N

elso

net

al.

1994)

to

exam

ine

per

ceiv

edso

cial

support

.

Glo

bal

sym

pto

min

dex

of

the

brief

sym

pto

m

inve

nto

ry

Satisf

action

with

life

scal

e.

Most

care

rsw

ere

spouse

s/liv

ing

assp

ouse

(82.5

%)

Most

(67.6

%)

re-

port

edth

atth

eypro

vided

hel

pto

the

pat

ient

dai

ly.

The

stro

nges

tpre

dic

tor

of

care

rpsy

cholo

gic

aldis

tres

sw

asneu

robe-

hav

iora

ldis

turb

ance

inPw

MS,

follo

wed

by

soci

alsu

pport

and

then

the

PwM

Sunaw

aren

ess

of

thei

rfu

nct

ional

defi

cits

.Th

est

ronges

tin

-

div

idual

pre

dic

tor

of

care

rs’

gen

eral

hea

lth

was

PwM

S’s

unaw

aren

ess

of

funct

ional

defi

cits

,fo

llow

edby

neu

robeh

avio

raldis

turb

ance

,so

cial

support

,co

gnitiv

eco

ntr

olan

ddis

ease

dura

tion.

The

stro

nges

tin

div

idual

pre

dic

tor

of

satisf

action

with

life

was

soci

al

support

follo

wed

by

SOin

com

e,unaw

aren

ess

of

funct

ional

defi

cit,

neu

robeh

avio

ral

dis

turb

ance

,pat

ient

psy

cholo

gic

aldis

tres

san

d

exec

utive

funct

ionin

g.

The

aver

age

leve

lof

psy

cholo

gic

aldis

tres

sw

ashig

her

than

that

obse

rved

inth

enorm

ativ

esa

mple

.

PwM

Sid

entified

the

SOas

a

per

son

who

was

‘act

ive’

in

his

/her

life

and

pro

vided

support

(e.g

.phys

ical

and/o

r

emotional

)on

are

gula

rba-

sis.

Dura

tion

of

SOprim

ary

care

rro

lera

nged

from

0.1

to30

year

s(M

=7.8

,

SD=

7.2

).

Wolli

net

al.

2006

(15)

Aust

ralia

Des

crip

tive

qual

itat

ive

surv

ey

Sam

ple

:nonra

ndom

Car

ers

(n=

11,re

sponse

rate

55%

;sp

ouse

:(n

=9)

nonsp

ouse

(n=

2)

Sem

i-st

ruct

ure

din

terv

iew

Four

them

esre

gar

din

gth

eim

pac

tof

MS

on

care

rsw

ere:

dis

bel

ief

and

dev

asta

tion;

the

nee

dto

acco

mm

odat

e‘lo

sses

and

forc

edch

oic

es’;

trac

king

dow

nse

rvic

esan

din

form

atio

n;

sadnes

san

dre

lief.

Car

ers

wer

eposi

tive

about

the

volu

nta

ryorg

aniz

atio

ns

and

view

ednurs

es&

doct

ors

ashel

pfu

lif

they

pro

vided

info

rmat

ion

&w

ere

acce

ssib

le.

The

rese

arch

ers

concl

uded

that

the

findin

gs

rais

eim

-

port

ant

ques

tions

of

the

role

of

pal

liative

serv

ices

insu

p-

port

ing

the

PwM

San

dhis

/

her

care

r.



Tab

le2

Sum

mar

yof

studie

sre

gar

din

gnonpro

fess

ional

care

rsof

peo

ple

with

multip

lesc

lero

sis

(Pw

MS)

(par

tner

s/sp

ouse

s)

Code

study

Study

des

ign,

sam

ple

,/m

ethods

&in

stru

men

tsK

eyfindin

gs

Com

men

ts

Boei

jeet

al.

(34)

2003

Net

her

lands

Qual

itat

ive

study

Sam

ple

:nonra

ndom

Spousa

lca

rers

(10

wom

enan

d7

men

)

Loose

lyst

ruct

ure

din

terv

iew

sar

ound

open

ques

tions

bas

edon

ara

nge

of

them

esder

ived

from

the

liter

ature

(both

par

tner

sw

ere

inte

rvie

wed

separ

atel

y

Car

ers

ente

rth

eca

ring

pro

cess

with

very

little

info

rmat

ion

and

without

clea

rex

pec

tations

of

what

they

would

enco

unte

r.

As

PwM

Sbec

om

ein

crea

singly

dep

enden

t,ca

rers

exper

ience

ahea

vyw

ork

load

and

caring

bec

om

esth

efo

cus

of

thei

r

lives

.Li

ving

with

MS

isdes

crib

edas

agra

dual

chan

ge

and

a

lear

nin

gpro

cess

,w

ith

care

rsco

ntinuin

gto

giv

eca

reas

a

resu

ltof

anin

terc

han

ge

bet

wee

npar

tner

sC

arin

gis

seen

as

inev

itab

lean

dM

Sis

defi

ned

asa

mis

fort

une.

Mar

ital

loya

lty,

arbitra

rines

sof

the

dis

ease

and

its

serious

nat

ure

contr

ibute

toth

eco

mm

itm

ent,

whic

his

esta

blis

hed

bet

wee

nth

epar

tner

and

per

sons

with

multip

lesc

lero

sis.

Study

of

par

tner

sof

PwM

San

dPw

MS

Boei

jeet

al.

(34)

2003

Bel

giu

man

dN

ether

lands

Qual

itat

ive

study

Sam

ple

:nonra

ndom

Spousa

lca

rers

(8m

enan

d5

wom

en)

Sem

i-st

ruct

ure

din

terv

iew

s

An

aver

age

of

5ac

tivi

ties

of

ato

talof

6poss

ible

activi

ties

of

dai

lyliv

ing

(bat

hin

g,

dre

ssin

g,

tran

sfer

,to

ileting,

continen

ceca

rean

dfe

edin

g)

wer

epro

vided

.

4/8

husb

ands

report

edso

me

hea

lth

pro

ble

ms

&4/5

wiv

es

report

edhea

lth

pro

ble

ms.

12

fam

ilies

rece

ived

hel

pfr

om

dis

tric

tnurs

esan

d9

from

house

keep

ing

serv

ices

.O

nly

one

couple

did

not

rece

ive

any

pro

fess

ional

hel

p.

Two

mai

nth

emes

emer

ged

asunder

lyin

gth

eca

ring

exper

ience

:ch

anges

inth

em

arital

rela

tionsh

ipan

dca

ring

was

som

ethin

gth

atth

eyhad

todo

and

was

view

edas

inev

itab

le,

reci

pro

cate

and

that

pre

vente

dad

mis

sions

Ove

rall,

the

pro

visi

on

of

care

was

motiva

ted

by

feel

ings

of

oblig

atio

nto

pro

vide

care

more

than

affe

ctio

n.

This

articl

ere

port

edon

13

inte

rvie

ws

from

an

origin

alst

udy

of

21

spouse

care

rs.

Thes

e13

inte

rvie

ws

focu

ssed

on

the

fact

that

the

motiva

tion

togiv

eca

rew

asin

spired

by

duty

and

the

pro

mis

esm

ade

togiv

eca

reto

one

anoth

er.

Bla

nk

and

Finla

yson

(33)

2007

USA

Qual

itat

ive

study

Sam

ple

:purp

osi

vesp

ousa

lca

rers

(n=

2)

Face

tofa

cein

-dep

thin

terv

iew

s

24

item

five

sub-s

cale

Car

egiv

erburd

enin

vento

ry

Both

care

rsre

port

edtim

ere

strict

ions

asth

egre

ates

tca

ring

chal

lenge.

One

care

ral

soex

per

ience

dburd

endue

to

rest

rict

ions

inth

eir

dev

elopm

ent

with

resp

ect

topee

rs.

Copin

gst

rate

gie

suse

dby

spouse

sin

clude:

taki

ng

tim

efo

r

self,

usi

ng

per

sonal

stre

ngth

s,sh

ifting

expec

tations,

usi

ng

form

alsu

pport

serv

ices

.

Study

of

par

tner

sof

PwM

San

dPw

MS

The

rese

arch

erre

port

edin

consi

sten

cies

bet

wee

nth

efindin

gs

from

the

care

giv

er

burd

enin

vento

ryan

dth

ein

terv

iew

for

one

of

the

par

tici

pan

ts.

Cheu

ng

and

Hock

ing

(36)

2004

Aust

ralia

Phen

om

enolo

gic

al-inte

rpre

tative

inquiry

Sam

ple

:nonra

ndom

volu

nta

rySp

ousa

lca

rers

(n=

10,

6m

enan

d4

wom

en)

Unst

ruct

ure

din

-dep

thin

terv

iew

sla

stin

g1–2

hours

The

par

tner

s’ex

per

ience

sar

edes

crib

edin

term

sof

a‘w

ebof

par

adoxe

s’,

whic

har

eex

pre

ssed

inte

rms

of

loss

esan

d

gai

ns

(of

par

tner

,se

lf,

support

,lif

esty

lean

dfu

ture

pla

nnin

g);

enab

ling

and

limitin

g;vu

lner

abili

tyan

dst

rength

.

Smal

l-sc

ale

study



Tab

le2

Continued

Code

study

Study

des

ign,sa

mple

,/m

ethods

&in

stru

men

tsK

eyfindin

gs

Com

men

ts

Court

set

al.

(37)

2005

USA

Qual

itat

ive

study

Sam

ple

:nonra

ndom

Spousa

lcar

ers

(n=

16,12

men

,

resp

onse

rate

73%

and

4w

om

en,

resp

onse

rate

40%

)

Focu

sgro

up

inte

rvie

ws

(n=

2)

Four

maj

or

them

esem

erged

:th

eca

rer

role

;th

enee

dfo

r

reso

urc

es;

rela

tionsh

ipch

anges

;bar

rier

s:hum

anan

d

envi

ronm

enta

l.G

ender

diffe

rence

s:m

ales

des

crib

ed

exper

ience

sobje

ctiv

ely

but

felt

angry

about

hum

anan

d

envi

ronm

enta

lfa

ctors

.Fe

mal

esp

ouse

sre

late

dth

eir

exper

ience

sw

ith

more

feel

ing

and

des

crib

edth

eir

pai

n.

The

lifes

tyle

of

the

caring

spouse

chan

ged

oft

enre

sultin

gin

apoore

rqual

ity

of

life.

Study

incl

uded

husb

ands

and

wiv

esw

ho

wer

eca

rers

of

PwM

S

Hew

ard

etal

.2006

(38)

Engla

nd

Gro

unded

theo

rysa

mple

:purp

osi

vesp

ousa

lca

rers

(n=

9,

5m

en,

4w

om

en)

Inte

rvie

ws

Two

mai

nth

emes

emer

ged

from

the

study:

1.

Hav

ing

apar

tner

with

MS

pro

voke

docc

upat

ional

const

rain

tsin

that

they

mad

ech

anges

toth

eir

lifes

tyle

to

acco

mm

odat

eth

eir

par

tner

’sM

Sor

chan

ges

wer

eim

pose

d

on

them

asa

resu

ltof

bei

ng

expec

ted

toad

just

.

Occ

upat

ional

const

rain

tocc

urr

edw

hen

the

par

tner

took

on

task

sth

atw

ere

once

not

thei

rsle

avin

gle

sstim

efo

rle

isure

occ

upat

ions

or

pai

dem

plo

ymen

t.

Difficu

lty

inpla

nnin

goutings

was

hig

hlig

hte

dow

ing

toth

e

unce

rtai

nty

of

the

conditio

n.

Unab

leto

mak

elo

ng-t

erm

pla

ns

asth

eyw

ere

unsu

reof

the

pro

gre

ssio

nof

thei

rpar

tner

’sM

S.

Ther

ew

asnost

algia

for

aM

S-fr

eeex

iste

nce

and

this

was

more

pow

erfu

lfo

rth

ose

whose

par

tner

’sdia

gnosi

sw

as

more

rece

nt.

Part

ner

sex

per

ience

dfr

eedom

thro

ugh

the

occ

upat

ions

that

they

shar

edprior

toth

eco

nditio

n,

and

isola

tion

and

alie

nat

ion

ow

ing

toth

ePw

MS

not

bei

ng

able

topar

tici

pat

ein

activi

ties

.

The

occ

upat

ion

of

bec

om

ing

aca

rer

was

acce

pte

dby

som

e

par

tici

pan

tsan

dvi

ewed

asan

intr

insi

cpar

tof

ever

yday

life.

For

oth

ers,

itw

asta

rnis

hed

with

rese

ntm

ent

and

a

sense

of

bei

ng

forc

edin

toa

role

they

did

not

wan

tto

fulfi

l.

2.

Hav

ing

apar

tner

with

MS

insp

ired

occ

upat

ional

opport

unitie

s

Taki

ng

on

role

sw

ithin

the

MS

soci

ety

and

esta

blis

hin

gnew

non-M

Sre

late

docc

upat

ions,

such

asco

llege

cours

es.

An

inve

stig

ativ

evo

cation

inte

rms

of

the

conditio

nitse

lf.

For

som

eocc

upat

ional

adju

stm

ent

was

the

key

toco

pin

g

with

occ

upat

ional

const

rain

ts,

and

crea

ting

opport

unitie

s.

(Som

evi

ewed

this

more

posi

tive

lyth

anoth

ers.

)

Occ

upat

ions

inth

isst

udy

refe

rsto

both

pai

d

emplo

ymen

t,ro

lech

anges

and

leis

ure

activi

ties



Tab

le2

Continued

Code

study

Study

des

ign,sa

mple

,/m

ethods

&in

stru

men

tsK

eyfindin

gs

Com

men

ts

Janss

ens

etal

.2003

(42)

Net

her

lands

Surv

ey

Sam

ple

:nonra

ndom

Part

ner

s/sp

ouse

s(n

=78,

resp

onse

rate

87%

)

Ques

tionnai

res

Hea

lth-r

elat

edQ

OL

(SF-

36)

Hosp

ital

anxi

ety

and

dep

ress

ion

scal

e(H

AD

S)

Impac

tof

even

tsc

ale

tom

easu

redis

ease

rela

ted

psy

cholo

gic

alst

ress

.

No

signifi

cant

diffe

rence

bet

wee

npar

tner

sin

mea

nSF

-36

score

san

dth

eco

ntr

ols

.

Car

ers

had

signifi

cantly

hig

her

leve

lsof

anxi

ety

than

contr

ols

from

aD

utc

hpopula

tion

sam

ple

.40%

had

clin

ical

ly

rele

vant

leve

lsof

anxi

ety.

No

signifi

cant

diffe

rence

regar

din

gdep

ress

ion.

Anxi

ety

and

dep

ress

ion

wer

enot

signifi

cantly

rela

ted

toth

epat

ient’

sse

verity

of

dis

abili

ty.

46%

had

clin

ical

lyre

leva

nt

leve

lsof

eith

eran

xiet

y,

dep

ress

ion

or

dis

tres

s.

36%

PwM

San

d24%

of

spouse

shad

leve

lsof

seve

re

dis

tres

s.

Com

par

isons

wer

em

ade

bet

wee

npat

ients

,

par

tner

san

dco

ntr

ols

from

the

gen

eral

popula

tion.

Res

earc

her

sco

ncl

uded

that

both

pat

ients

and

thei

rpar

tner

sex

per

ience

hig

hle

vels

of

anxi

ety

and

dis

tres

sin

the

early

per

iod

afte

rdia

gnosi

s.

Kle

iboer

etal

.2006

(40)

Net

her

lands

Surv

ey

Sam

ple

:nonra

ndom

Part

ner

s/sp

ouse

s(n

=61,

resp

onse

rate

:not

know

n)

Deo

mogra

phic

and

dis

ease

rela

ted

ques

tionnai

re

Com

pute

rize

ddia

ryusi

ng

the

follo

win

g:

Res

earc

her

dev

eloped

3-ite

mem

otional

support

scal

e

Posi

tive

and

neg

ativ

eaf

fect

sched

ule

(PA

NA

S)

Res

earc

her

dev

eloped

7-ite

mse

lfes

teem

scal

e

Are

sear

cher

dev

ised

chec

klis

tbas

edon

the

revi

sed

has

sle

and

uplif

tsc

ale

Part

ner

spro

vided

more

emotional

and

inst

rum

enta

lsu

pport

than

they

rece

ived

.Th

eir

mood

ben

efite

dfr

om

rece

ivin

g

emotional

support

and

pro

vidin

gin

stru

men

talsu

pport

Rec

eivi

ng

emotional

support

from

PwM

Sre

sulted

inlo

wer

neg

ativ

em

ood

inpar

tner

s.

Study

of

par

tner

sof

PwM

San

dPw

MS.

Kle

iboer

etal

.2007

(41)

Net

her

lands

Surv

ey

Sam

ple

:nonra

ndom

Part

ner

s(n

=59,

resp

onse

rate

:not

know

n)

Deo

mogra

phic

and

dis

ease

rela

ted

ques

tionnai

re

Com

pute

rize

ddia

ryusi

ng

the

follo

win

g:

Res

earc

her

dev

eloped

3-ite

mem

otional

support

scal

e

PAN

AS

Res

earc

her

dev

eloped

7-ite

mse

lfes

teem

scal

eA

rese

arch

erdev

ised

chec

klis

tbas

edon

the

revi

sed

has

sle

and

uplif

tsc

ale

Part

ner

sw

ho

report

edre

ceiv

ing

neg

ativ

ere

sponse

sre

port

ed

exper

ienci

ng

more

dai

lyhas

sles

and

hig

her

end

of

day

neg

ativ

em

ood

than

par

tner

sw

ho

did

not

report

rece

ivin

g

neg

ativ

ere

sponse

s.

End-o

f-day

posi

tive

mood

was

unre

late

dto

rece

ived

neg

ativ

ere

sponse

s.

The

adve

rse

effe

ctof

rece

ived

neg

ativ

ere

sponse

son

end-o

f-

day

mood

was

moder

ated

by

rece

ivin

gem

otional

support

on

the

sam

eday

.

Kle

iboer

etal

.2006

and

2007

report

on

dat

a

from

the

sam

est

udy.



Tab

le2

Continued

Code

study

Study

des

ign,s

ample

,/m

ethods

&in

stru

men

tsK

eyfindin

gs

Com

men

ts

Koopm

anet

al.

2006

(39)

Can

ada

Surv

ey

Sam

ple

:ra

ndom

Car

ers

(n=

240,

resp

onse

rate

48%

spouse

s=

203,

nonsp

ouse

s=

37)

Origin

alnee

ds

surv

eyques

tionnai

redes

igned

from

focu

sgro

ups

147

(62%

)of

SOw

ere

mal

esan

dra

nged

inag

efr

om

30

to

60

year

s.

148

(66%

)w

ere

emplo

yed,

220(9

2%

)had

hig

h-s

chool

educa

tion,

142

(60%

)w

ere

inurb

anre

siden

ce

The

top

10

nee

ds

iden

tified

wer

e:

Tokn

ow

that

doct

ors

are

inte

rest

ed(n

=222,

92.5

%)

Tohav

ea

support

ive

fam

ilydoct

or

(n=

219,

91.2

%)

Tokn

ow

that

indiv

idual

MS

team

mem

ber

sth

atth

ePw

MS

sees

are

inte

rest

ed(n

=219,

91.2

%)

Tohav

eth

esu

pport

of

fam

ilyan

dfr

iends

(217,

90.4

%)

Tofe

elpro

duct

ive

inlif

e(n

=209,

87%

)To

rece

ive

regula

rnew

sle

tter

sfr

om

the

MS

clin

ic(n

=209,

87%

)

Tobe

reas

sure

dth

atw

hen

Ica

llth

ecl

inic

‘Iam

not

both

erin

gth

em’

(n=

205,

85.4

%)

Tobe

enco

ura

ged

tom

ainta

inco

ntr

ol

of

my

ow

nlif

e

(n=

205,

85.4

%)

Tore

ceiv

ein

form

atio

nab

out

the

serv

ices

the

MS

clin

ic

off

ers

(n=

195,

81.2

%)

Tohav

efinan

cial

secu

rity

todo

allal

lIw

ant

todo

tom

ake

life

with

MS

bet

ter

(n=

193,

80.4

%)

Uncl

ear

whet

her

the

term

SOre

fers

to

spousa

l/par

tner

care

ror

oth

erin

form

alca

rer

or

even

ifth

eyw

ere

care

rsat

all.

Perr

one

etal

.2006

(43)

USA

Surv

ey

Sam

ple

:nonra

ndom

Car

ers

(n=

40,

resp

onse

rate

20%

)

Ques

tionnai

reco

mprisi

ng

dem

ogra

phic

sect

ion

10

item

mar

ital

satisf

action

subsc

ale

of

the

ENRIC

Hsc

ale

11-ite

mRubin

love

scal

e

6-ite

mse

xual

rela

tionsh

ipsu

bsc

ale

of

the

ENRIC

Hsc

ale

10-ite

mco

mm

unic

atio

nsu

bsc

ale

of

the

ENRIC

Hsc

ale

The

care

giv

erburd

ensc

ale

Man

yw

ere

com

bin

ing

multip

lero

les

(spouse

,par

ent,

care

er

per

son

and

care

r).

Car

ers

had

low

erove

rall

mar

ital

satisf

action

score

s,lo

wer

score

son

com

munic

atio

nan

dlo

wer

satisf

action

with

phys

ical

intim

acy

com

par

edto

norm

edsc

ore

sfo

rth

esc

ales

use

d.

No

gen

der

diffe

rence

sw

ere

found

Mar

ital

satisf

action

was

signifi

cantly

neg

ativ

ely

corr

elat

edw

ith

care

rburd

enan

dw

assi

gnifi

cantly

posi

tive

lyco

rrel

ated

with

love

,phys

ical

intim

acy

and

com

munic

atio

nTh

ere

sults

of

the

multip

lere

gre

ssio

nan

alys

isco

nfirm

edth

atca

rer

burd

en

contr

ibute

dneg

ativ

ely

tom

arital

satisf

action

and

par

tly

sup

port

edth

eposi

tive

rela

tionsh

ipof

love

and

com

munic

atio

nto

mar

ital

satisf

action,but

not

the

rela

tionsh

ipbet

wee

nphys

ical

intim

acy

and

mar

ital

satisf

action.

The

resu

lts

indic

ated

that

care

rburd

enneg

ativ

ely

impac

ted

on

mar

ital

satisf

action.

Satisf

action

with

phys

ical

intim

acy

was

not

signifi

cantly

rela

ted

tom

arital

satisf

action.

The

study

was

limited

by

the

smal

lsa

mple

size

ow

ing

tolo

wre

sponse

rate

.



access to appropriate support and information so that they

could feel productive and maintain control of their lives.

Wollin et al.’s (15) study illuminated the challenge of

becoming a carer by describing the experience of disbelief

and devastation, the need to accommodate ‘losses and

forced choices’ and sadness and relief. This study reiterated

the importance of information and access to support. More

recently, psychological and emotional concerns, such as

helplessness and emotional strain, comprised one of seven

carer problems reported in Pakenham’s study (18),

emphasizing the importance of emotional support to carers.

Psychological distress and emotional strain were con-

sistently associated with reduced QOL, life satisfaction and

depression. Pakenham (17) examined the relationship

between stress and coping predictors and negative and

positive outcomes in MS caring. He found that higher

stress appraisals were related to higher distress, lower sat-

isfaction and negative affect, and that carers experienced

higher distress when they relied on avoidance coping

strategies and placed less reliance on meaning-based cop-

ing (positive reframing). In a more recent study (18), high

carer activity was related to lower positive states of mind

scale (PSOM) scores and lower life satisfaction and greater

personal reward, including strengthened relationships and

increased insight. Indeed, high care activity levels and care

burden have been consistently related to poorer psycho-

logical health in carers (21, 30).

Impact of disease characteristics on carers. The particular dis-

ease characteristics of MS appear to add an extra dimen-

sion to the caring experience. For example, depression,

cognitive and neuropsychiatric symptoms, including

delusion, disinhibition, agitation and anxiety in the PwMS

have been found to be significantly correlated with carer

distress over and above the effect of motor disability (26).

Khan et al. (20) also found a significant correlation be-

tween stress, anxiety and depression in the PwMS and the

caregiver strain index (CSI) total score, reflecting the

emotional adjustment, demands on carer time, change in

carer personal plans and disturbed sleep. Carers in Khan

et al.’s study rated emotional adjustments and family

adjustments owing to disrupted routine as causing severe

strain with disrupted schedule having a major impact upon

carers (21). Strained carers consistently report significantly

worse QOL scores (17, 20, 30). Sherman et al. (28) con-

firmed others’ findings but noted that the strongest

individual predictor of psychological distress was neuro-

behavioural disturbance in the PwMS, followed by the

adequacy of social support, followed by the PwMS’s lack of

awareness of their functional deficits.

Carer burden. Carer burden, which refers to the physical,

psychological, emotional, social and financial difficulties

experienced by carers (18), has been associated with

negative outcomes for carers, including: carers’ mood andTab

le2

Continued

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mental health (6, 13, 14, 16, 18, 21, 22, 26) and QOL

(21, 29) with levels of psychological distress being signifi-

cantly higher than the normative population (28). Al-

though Kristjanson et al. (13) found little dysfunction

among carers using the general health questionnaire

(GHQ), they noted that over a quarter of carers had

problems with the response category ‘rather more than

usual and much more than usual’ (p. 373). This contrasts

with Gottberg et al.’s (12) pilot study testing the adequacy

of the sickness impact profile (SIP), which reported that

carers experienced modest subjective dysfunction, while

other studies reported mental and physical health prob-

lems among carers of PwMS (21, 26) and high GHQ scores

(poor health) (22). The commonest and most severe health

problems reported were anxiety, tiredness and depression,

and although less frequent, sexual and relationship prob-

lems were also regarded as severe (21). Pakenham (17)

reported an inverse relationship between depression and

anxiety and carer life satisfaction.

In a study by Forbes et al. (21), the variables that con-

tributed most to care burden and health status were disease

impact, dyadic health and carer activity, with the mental

health component also contributing to the health status.

Both care burden and health status were significant in

explaining 39% and 49% of the variance in the Caregivers

reaction assessment scale (CRA) and health problem vari-

ables, respectively. Carers’ needs and burden were found to

increase with increased carer activity (21) and care recipient

disability (13, 14, 27). Forbes et al. (21) found that greater

disease impact in the PwMS was related to more carer

activity, and that over time, the level of carer activity

increased in relation to all care activities. They also dem-

onstrated worsening health and increasing burden in rela-

tion to higher levels of carer activity, and this finding was

independent of the effects of disease impact and carer age.

Pakenham (19) has reported an association between

high care recipient symptoms and lower carer satisfaction.

Indeed, the strongest individual predictor of carer satis-

faction with life in Sherman et al.’s study (28) was social

support followed by significant other income, unawareness

of functional deficit, neurobehavioural disturbance,

psychological distress and executive functioning in the

PwMS. The impact of financial distress owing to loss of a

PwMS’s earnings was also highlighted by DeJubicibus and

McCabe (29), and was found to have greatest impact on

low-income families with teenage children. Patti et al. (27)

reported that lower physical functioning of the PwMS was

associated with lower carer scores on all SF-36 dimensions

and that lower QOL of the PwMS was associated with

lower carer social functioning scores. The disease trajectory

was recognized by Kristjanson et al.’s (13) carer sample

who reported anticipating the ‘bumpy road ahead of them’

(p. 375). This small-scale study noted that, where the

PwMS received more tailored services and more palliative

care services, carers were the most satisfied. However,

Krisjanson et al.’s study must be interpreted in the context

of the participants included in the study, who, for ethical

reasons, were in the early stages of the disease and thus may

not have experienced unmet needs or used services (13).

The increased need for more help as the disease pro-

gresses was a consistent finding (14, 21), and Khan et al.

(14) reported that many of their participants were not in

contact with a nurse or therapist with the burden of care

falling exclusively on the family and unpaid carer with all

its negative consequences upon the carers themselves.

They also noted Freeman et al.’s (1999) assertion that

carer strain is partly predictable and may be amenable to

prevention or reduction with appropriately directed

health-care resources.

Pozilli et al. (25) re-analysed data from a randomized

controlled trial with a 1-year follow up comparing the

effectiveness and the cost of multidisciplinary home care in

MS with traditional hospital care. They found that

depression in carers was related to the physical, emotional

and health status of the PwMS both at the start of the study

and at 12-month follow up. They also found that, when

carers’ depression worsened or improved over time, there

was a significant associated change in the PwMS’s dis-

ability. Pozilli et al. (25) argued that their findings sup-

ported a previously reported relationship between

depression in carers and longer disease duration and

higher severity of MS although they acknowledged a lack

of a control group and cautioned against concluding that

the association between carer psychological state, and

disability and emotional problems of PwMS implies that

carer depression is caused by these factors.

Benefits of caring. Only Pakenham (30) has examined the

nature of benefit finding in carers of PwMS using both

qualitative and quantitative methods with a large sample

of carers (n = 267). The qualitative data revealed that ca-

rers experienced seven benefits, including: greater insights

into illness and hardship; interpersonal benefits, such as

companionship gains; personal growth, such as becoming

more patient; the strengthening of relationships; increased

appreciation of life; health gains; and a change in life pri-

orities and personal goals. The findings derived from the

Carer Benefit Finding Scale which has two main compo-

nents – ‘Personal Growth’ and ‘Family Relations Growth’ –

showed differential relationships with illness and adjust-

ment domains. The benefit finding from the PwMS and

carer perspective correlated on all items except in the area

of ‘Family Relations Growth’, which showed the large

differences between the carers and the PwMS. Pakenham

(30) suggested that the PwMS was more likely to perceive

and value growth from family relations because of their

dependency on family caring. He also argued that the high

number of item correlations was the result of ‘… the no-

tion of a ‘communal search for meaning within carer-care

recipient dyads’ (p. 994). The Carer Benefit Finding Scale



factors were found to be positively related to carer and the

PwMS dyadic adjustment; however, the PwMS benefit

finding was unrelated to the carer adjustment domains.

Further, the carer benefit finding was related to carer po-

sitive adjustment domains and unrelated to carer negative

adjustment domains, suggesting that carer benefit finding

has a positive impact on carer adjustment. Interestingly,

greater benefit finding was also found to be related to high

carer activity (18).

Despite the limitations of the research, it is clear that,

while there are some benefits to carers in relation to caring

for PwMS, carers also experience stress, high care burden

and inadequate professional support. Holland and Nor-

throp (31), in a discussion paper exploring the benefits of

home services and coordination of care for the PwMS,

emphasized how carers of the PwMS differ from other

carers as they are more likely to be young or middle-aged

adults, to have children at home and to be employed full

time. They highlighted that carer strain for family mem-

bers caring for the PwMS is related to several contributing

factors with memory problems, needs in relation to activ-

ities of living and bowel dysfunction being particularly

stressful for carers.

Services available to carers

Four studies highlighted the inadequacy of the support

services available (11, 15, 20, 24). A study carried out in

the United Kingdom (11) investigating the nature of

informal and professional care in a community population

of PwMS found that respondents were most likely to be

assisted by their family rather than health or social-care

professionals and that the help which they received was

considered essential by approximately 70% of the

respondents. Another UK study (24) reported that many

carers were very unhappy with the formal support services

in place as they did not meet their needs or those of the

PwMS and were ‘… of such poor quality that they caused

both carer and care recipient much distress and angst’ (p.

227). An Australian study (15) comparing support for

people with motor neurone disease, Huntingdon’s disease,

Parkinson’s disease and MS identified that PwMS and their

families had difficulties accessing services and information

and noted the positive role played by the disease voluntary

organization and health-care professionals who provided

useful information and were accessible to PwMS and their

families. Another Australian study (20) reported a desire

for more respite services and a preference for home-based

provision.

However, the provision of professional support services

may not be just a matter of providing the service but of

educating carers regarding what they should ask for and

accepting the support services when offered. McKeown

et al. (24) found that carers may go through four stages in

their acceptance of support with caring; initially, they may

reject support but with time and as the PwMS becomes

more dependent, they may resist asking for support until

they reach a crisis when they seek out support progressing

to finally accepting the support given. The initial rejection

may be related to the carer’s desire to protect themselves

and the PwMS from the reality of MS reflecting a strong

desire to care for their loved one alone without assistance

from informal/formal services (24). They emphasized that

a carer’s view of or acceptance of support is not static and

that a carer may experience more than one phase at any

one time. This sample of carers reported that the formal

support services frequently did not meet their needs or

those of the PwMS as they were inconsistent, inflexible

and of poor quality causing much distress and angst to the

carer to the point that the carer rejected the support

completely (24).

Gender differences. Two studies (21, 27) provide some in-

sight into the differences between male and female carers.

While Forbes et al. (21) reported greater burden on the

disrupted schedule and health scales of the Caregiver’s

Reaction Assessment Scale among female carers compared

with male carers, Pattie et al. (27) found that the magni-

tude of QOL deterioration among carers was small. Mental

health was the dimension most affected in the carers,

especially males, followed by vitality and general health

(p < 0.001). Bodily pain was slightly higher in carers than

in normal subjects, especially among the female carers

(p < 0.001). Although the physical functioning of PwMS

impacted on carers, the age and gender of the carer were

found to be the main predictors of carer QOL.

While these studies provide some knowledge regarding

the impact of caring for PwMS, they provide limited

information in relation to how the well being of carers

impact upon the well being of PwMS or how the use of and

availability of support services impact on the psychological

well being of carers. Furthermore, the literature (31)

highlights that, if partners have to take on responsibilities

for personal care without any support from others, they

may be at risk for burnout. As a result, the PwMS may

experience neglect as the carer tries to juggle work, child

care and house work while providing necessary care for a

loved one. However, these assertions were not confirmed

by the studies exploring caring from the perspective of

spouses.

Spouse studies

The spouse studies examined the following areas: immune

response (32); experience of care giving (33–37); psycho-

logical outcomes and QOL, including marital satisfaction

(38–43). Both qualitative (n = 6) and quantitative (n = 6)

approaches were utilized, and together, they provide in-

sight regarding the spousal dimension of care-giving and

suggest that spouse carers have particular needs. Two



themes emerged in relation to spouses of PwMS, namely

the impact of caring and gender differences in caring.

Impact of caring

Four sub-themes emerged under the impact of caring: the

psychological and emotional impact of caring, carer bur-

den, losses and gains and marital satisfaction. Losses and

gains and marital satisfaction had both a positive and

negative impact on spouses.

The psychological and emotional impact of caring. Both the

PwMS and their spouse experience high levels of anxiety

and distress in the early period after diagnosis (42). Janssen

et al. (42) found that, on average, at 8 months after diag-

nosis (0–24 months), 40% of spouses reported high levels

of anxiety with 24% reporting severe stress. This echoes

the findings from an earlier study (32) which noted that

stress levels were higher in partner carers of PwMS com-

pared with noncarers. Courts et al. (37) has also reported

how friends and family were a source of stress for carers

because they did not understand MS and tended to

disappear as they felt unable to face the demands of the

illness.

Spouses’ end-of-day mood benefited from giving

instrumental support to and receiving emotional support

from the PwMS (40). More daily hassles and higher

end-of-day negative mood were reported by spouses who

received negative responses from the PwMS than those

who did not receive negative responses (41). However, the

adverse effects of the received negative responses on

end-of-day mood were moderated by receiving emotional

support on the same day (41).

Carer burden. Only one small-scale qualitative study (33)

(n = 2) explored spousal care burden, and therefore, the

transferability of the findings is limited. Time restrictions

and restrictions in development with respect to peers were

highlight as issues of concern. Similar findings were also

identified by Heward et al. (38) in the themes that

emerged from a grounded theory study on the way MS

affects the occupations of partners of PwMS.

Losses and gains. Cheung and Hocking (36) described how

spouses of PwMS responded to non-death-related losses.

They highlighted carers’ experiences of loss and gain and

their feelings of vulnerability and strength through pre-

senting some of the paradoxes found in the qualitative

data. Spouses experienced both loss and gain as they had:

‘… lost the person they once knew and gained a changed

person to look after’ (p. 157). They also lost the compan-

ionship of their spouse while simultaneously losing aspects

of themselves as a person with paid employment which is

valued by society and gaining the role of an unpaid carer.

Some of the carers also reported losing support from family

members, while others reported gaining this support. In-

come and lifestyle changes were experienced by all carers

in the study with lack of money resulting in the loss of

holidays and restrictions regarding family outings. Addi-

tionally, giving up full-time employment to look after their

spouse meant that their future employment opportunities

were limited. While for some, the carer role exposed their

vulnerability, it also helped them to develop strength.

Similar findings were reported by Heward et al. (38) in

terms of occupational constraints and opportunities expe-

rienced as a result of becoming a carer.

Court et al. (37) also noted the experience of loss with

participants reporting the loss of their partner together

with the loss of a fulfilling sexual relationship. Women

reported finding the role reversals challenging and de-

scribed MS as: ‘the third person in a marriage’ (p. 20). This

study highlighted the need for spouses to find a safe place

to discuss what Courts et al. (37) described as: ‘the dark

side of their feelings’ (p. 24). In addition to the losses

experienced, the reported relationship changes included

more arguments and disagreement in what was described

as a harmonious marriage prior to the illness (37) and

changes in overall marital satisfaction (43).

Marital satisfaction. One study explicitly explored the con-

cept of marital satisfaction. Perrone et al. (43) compared

carers of PwMS with scores from a normative group and

found that carers of PwMS had lower overall marital sat-

isfaction, lower scores on communication and lower sat-

isfaction with physical intimacy than the normed samples

for the measurement scales. However, carers of PwMS

reported greater amounts of love for their spouses than the

normed sample, and they did not indicate high levels of

perceived burden. Further, there were no gender differ-

ences in this study. Nonetheless, marital satisfaction was

negatively correlated with carer burden and was positively

correlated with love, physical intimacy and communica-

tion. Perrone et al. concluded that the findings suggested

that carer burden negatively impacts on marital satisfac-

tion, but that satisfaction with physical intimacy is not

significantly related to marital satisfaction. Positive aspects

of relationship changes were also highlighted by Courts

et al. (37). Some of the participants in Perrone et al.’s (43)

study reported having a stronger marriage, while others

reported ambivalence about their marriage. Indeed, one

respondent described how they also had the disease, not

just the PwMS reflecting the consequences upon a spousal

relationship.

Gender differences

Two studies (35, 37) provided some insight regarding the

differences between male and female carers. Boeije et al.

(35) reported how male and female carers developed

different perspectives of care-giving. While the male



carer’s perspective was characterized as: ‘you have to be

satisfied with it, feel obliged to give care and then be-

come resigned to it’ (p. 238), the female care-giving was

depicted as: ‘I have to become harder and less self-sac-

rificing’ (p. 238).

Men and women also differed in how they protected

themselves and their own lives; men were more likely to

set limits and protect their own lives, while women tended

to feel guilty if they did this, and reported feeling less

compensated for their caring efforts and overall suffered

more from the burden of caring. This gender difference

was also reported by Courts et al. (37), who found that,

while women tended to describe the lifestyle changes and

role reversals with great feeling, men tended to describe

their experiences more objectively. Thus, while women

became advocates to help their husbands maintain inde-

pendence and existing roles, men tended to feel angry and

take on a protective role. Men expressed anger about hu-

man and environmental barriers and became protectors of

their wives’ time, energy and employment opportunities

and were particularly angry with those who did not appear

to understand the effects of MS on the PwMS. Men dem-

onstrated their support by taking on more household

management, participating in giving injections and going

with their spouses to see their physicians.

Male and female carers also differed in relation to the

stress experienced with female carers reporting more stress

than male carers (35).

In addition to the aforementioned themes, one study

(39) was found that identified the top 10 needs of spouses

of PwMS. These included: the need for support from

health-care professionals, family and friends; to know that

health-care professionals are interested and to feel com-

fortable in communicating with them; to get information

about the condition and services on offer; and encour-

agement to maintain control over their own lives.

Discussion

All the studies had descriptive designs and many had sig-

nificant methodological weaknesses, including small sam-

ple sizes, nonrandom sampling, recruitment from small

geographical areas and use of unvalidated instruments.

Only studies reported in English language were included,

which may have excluded a number of European studies;

however, while McKeown et al.’s (3) review included only

three European studies, this review included 16. Addi-

tionally, there may be a publication bias as studies were

only included if they had been published in peer-reviewed

journals catalogued in the databases used to identify the

papers for inclusion. It is hoped that the review provides a

comprehensive extension to the earlier review of McKe-

own et al. (3).

The papers included in this review confirmed the

findings of McKeown et al.’s (3) review, namely the

major impact that caring has upon many aspects of ca-

rers’ lives and other dimensions of health. In particular,

the negative impact upon carers’ psychological well

being and the impact of increasing disability of the

PwMS was well demonstrated across a number of stud-

ies. In this review, the increased burden owing to the

advancing age of the PwMS was also highlighted.

Additionally, the particular characteristics of MS as a

disease appear to increase the carer burden, highlighting

the need for professionals to recognize the unique and

additional needs of carers of PwMS in comparison with

those caring for others.

Resource constraints are increasing the reliance upon

carers to provide ongoing support for PwMS emphasizing

the importance of maintaining the well being of carers, if

PwMS are to be sustained at optimal levels of functioning

and independence in their homes. Health-care profes-

sionals need to prioritize health promotion among carers of

PwMS if the deleterious effects of care giving are to be

minimized and poor health avoided.

This review, like the earlier review, found continued

poor support provision for carers of PwMS despite the

evidence that it is helpful and a source of satisfaction. It

seems that access to information and services remains a

challenge for carers with the reluctance of carers to accept

offered support playing a part. Much work needs to be

done by health-care professionals to both improve access

to services and to encourage carers to accept available

support.

However, unlike the earlier review, two additional

themes emerged from the papers, namely, that some carers

gain personal reward from their caring, although this was

by no means universal, and that the needs of spouses are

distinct and in addition to those of other carers. While both

groups of carers experienced both negative and positive

aspects to caring, the nature of the spousal relationship

meant that the experience was described in a more per-

sonal and intense manner in terms of a ‘web of paradoxes’

and expressed in terms of losses and gains (36). Although

both groups also experienced gender differences, carers in

general experienced this in terms of mental and physical

health. However, for spousal carers, the difference was in

the giving of care and the emotional aspect of caring. The

differences between carers and spousal carers was echoed

in Figved et al.’s study (26), where spouses reported sig-

nificantly higher levels of total carer distress and reduction

in QOL compared with other groups, and close friends

reporting least carer distress. Carers were reported to gain

benefit where there was carer adjustment within the car-

er–PwMS dyad (30), which echoes an assertion of Forbes

et al. (21) that health-care professionals should consider

the carer–PwMS dyad in the assessment of need. The

particular needs of spouses warrant especial attention by

health-care professionals if marriages are to be sustained in

the changed circumstances.



Conclusion

Thirty-three studies from 11 countries were reviewed

which addressed a wide range of foci reflecting the breadth

of issues facing carers of PwMS. The studies revealed

consistent evidence of the need for resources and services

to relieve carer burden. However, as in the earlier review,

all the studies were descriptive, some with significant

methodological flaws so that descriptive evidence contin-

ues to be accumulated to the neglect of the development

and testing of interventions to support carers continuing in

their essential role.

This review highlights that, while all carers of PwMS

need professional support, spouses/partners who are carers

have additional and different needs to other carers. The

findings suggest that carers of PwMS face similar issues

internationally and that much remains to be done to limit

the negative impact of caring. As carers of PwMS are a

small group within the larger carer population, there is a

danger that their unique needs will be overlooked when

allocating scarce resources.

A national needs analysis incorporating the views of all

stakeholders is required to determine appropriate support

structures for carers of PwMS. Such support structures

should be uniquely tailored to the specific needs of carers

of PwMS and include the following: access to information

and education, professional counselling services, support

group facilitation and advocacy. In providing holistic care

to PwMS, health-care providers should also consider the

needs and well being of carers. There is also a need for

research to move beyond descriptive studies and to vali-

date instruments to assess carers of PwMS to permit

comparisons across studies internationally and to enable

the measurement of outcome of new interventions to

support carers of PwMS.

Author contributions

Margarita Corry performed literature search, analysis of

the literature and drafting of the review. Alison While gave

literature search advice, analysed the literature and gave

critical review of drafts and advice.

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The needs of carers of people with multiple sclerosis: a literature review