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Palliative Medicine 1999; 13: 275–283

Lay carers’ satisfaction with community palliative

care: results of a postal survey
Jan Lecouturier, Ann Jacoby, Colin Bradshaw, Tim Lovel and Martin Eccles On behalf of the South
Tyneside MAAG Palliative Care Study Group*

Abstract: This paper reports the substantive findings of a study that examined the
feasibility of using postal questionnaires to assess the satisfaction of lay caregivers with
the care received in the community by those dying of cancer. The focus of the analysis
was the quality of information provided by health professionals, health services used
in the final year of the dying person’s life and the lay carer’s views about the quality of
these services. The study was a retrospective survey of lay carers identified from death
certificates over a 9-month period. Of the 355 people contacted, 156 completed the
questionnaires, a 44% response rate.
The results of the survey indicate that information provision was deemed
unsatisfactory by a large proportion of respondents, and that dissatisfaction with care
received from hospital, the district nursing service and the general practitioner was
common. Levels of satisfaction with care were clearly related to a range of service
factors. Our survey also highlighted clear differences in the perceived quality of
specialist and generic services for those dying of cancer. A comparison of the findings
from this postal study with those reported in earlier retrospective interview surveys of
lay carers suggests that the use of the postal questionnaire is a valid and cost-effective
approach for assessing quality of care. The data provide baseline information against
which improvements in the quality of care can be measured.

Key words: caregivers; community health services; health care surveys; neoplasms;
patient satisfaction; terminal care

Resumé: Cet article rapporte les observations significatives issues d’une étude sur la
faisabilité de l’évaluation par des questionnaires envoyés par la poste du niveau de
satisfaction des soignants non professionnels quant aux soins reçus par des patients
cancéreux en phase terminale. Le point central de l’étude était la qualité de l’information
donnée par les professionnels de santé, le type de services de santé utilisé durant la
dernière année de vie et l’opinion des soignants non professionnels quant à la qualité
de ces services. Cette étude consistait en une enquête rétrospective de soignants non
professionnels identifiés par les certificats de décès sur une période de 9 mois. Parmi

*Members of the South Tyneside MAAG Palliative Care Study

Address for correspondence: Dr Ann Jacoby, Centre for Health
Services Research, 21 Claremont Place, Newcastle upon Tyne
NE2 4AA, UK. E-mail: ann.jacoby@ncl.ac.uk
Group are: Dr Colin Bradshaw, Chairman, South Tyneside
MAAG; Mrs Edna Briscoe, Palliative Care Research Co-
ordinator; Sister Anne Gardner, Macmillan Nurse; Sister Sue
Goldsborough, South Tyneside MAAG member; Dr Jane
Halpin, Consultant in Public Health Medicine; Professor Tim
Lovel, St Clare’s Hospice and University of Sunderland; Sister
Carol McCarthy, district nurse; Mrs Eileen Murray, Audit Co-
ordinator, South Tyneside MAAG; Sister Jackie Richardson,
hospice nurse; Dr S Vis-Nathan, general practitioner.

© Arnold 1999 0267–6591(99)PM242OA

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276 J Lecouturier et al.

les 355 personnes contactées, 156 ont rempli les questionnaires, soit un taux de
réponse de 44%.
Les résultats de l’enquête montrent que pour une large proportion de répondants,
ils ne disposaient pas de suffisamment d’informations, que les soins aient été dispensés
à l’hôpital, par le service de soins infirmiers à domicile ou par le médecin généraliste.
Les niveaux de satisfaction pour les soins étaient clairement corrélés à une gamme de
facteurs concernant les services. Notre enquête a également mis en lumière des
différences nettes dans la façon d’apprécier par les patients mourant de cancer la qualité
des services spécialisés et généraux. Une comparaison des résultats de notre enquête
sur les questionnaires envoyés par la poste avec les résultats d’enquêtes
rétrospectives sur entretiens avec les soignants non professionnels suggère que le
questionnaire constitue une approche valable et rentable de l’évaluation de la qualité
de vie. Les résultats fournissent un état des lieux permettant de mesurer les
améliorations à apporter.

Mots clés: soignants; services de soins publics; enquêtes de santé; néoplasies;

satisfaction des patients; soins terminaux.

Introduction al support and the lack of practical help with phys-

Recent studies have revealed that despite marked
improvements in knowledge and expertise and the
rapid expansion of specialist palliative care services,
deficiencies persist in the care provided for people
dying of cancer in the community. Reported prob-
lems relate to a number of areas of care including:
infrequent visits to patients by health professionals
involved in their care,1 inadequate control of pain
and other distressing symptoms,2 poor communica-
tion,2,3 poor provision of standard resources such as
nursing care and equipment,4 and lack of emotion-
al support for the family.2 For example, Higginson
et al.5 reported negative comments from both the
patients themselves and their carers in relation to
communication, coordination of services and the
attitudes of doctors. Addington-Hall et al.4 inter-
viewed the lay carers of patients terminally ill with
cancer and reported that good symptom control had
not been achieved for all patients, there was a lack
of continuity of care, contact with social services was
infrequent, and the supply of equipment was inad-
equate and ill-timed, as was the provision of infor-
mation by general practitioners and the hospital
services. Sykes et al.2 found that the most common
reasons for dissatisfaction with community services
among lay carers of cancer patients were the atti-
tudes of health professionals, the lack of emotion-
ical care tasks.
The majority of studies that have attempted to
address the issue of patient and lay carer satisfac-
tion with palliative care are limited by problems of
selection bias and small sample size, so that inter-
pretation of their findings must be made with cau-
tion. Recently, however, the Regional Study of Care
for the Dying (RSCD) has produced information
from 20 nationally representative health districts in
England and Wales, relating to 3696 deaths in total
and 2074 deaths from cancer.3 This national study
confirms many of the findings of the smaller, local
ones highlighted above. In particular, its authors
report that, despite increasing expertise with
regard to symptom relief, those who were dying
from cancer frequently experienced symptoms
which were poorly controlled; a significant propor-
tion were reported to have needed more help than
they got from community services with activities of
daily living; and their lay carers were often unable
to get all the information they wanted about the
patient’s condition when they wanted it. These
authors therefore conclude that there is still a
considerable way to go before all patients dying of
cancer receive high-quality care.
The present study was undertaken in South Tyne-
side borough, which has a population of approxi-
mately 157 000. Long-term industrial decline and

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Lay carers’ satisfaction with palliative care 277

the accompanying high levels of unemployment Respondent characteristics

mean that levels of socioeconomic deprivation in
South Tyneside are high. Awareness of problems in
the provision of palliative care in the area high-
lighted to the local Medical Audit Advisory Group
(MAAG) the need for regular audit of services and
for identification of any shortcomings. The group
therefore commissioned the Centre for Health Ser-
vices Research (CHSR) at the University of New-
castle to develop and evaluate psychometrically a
postal questionnaire to be administered retrospec-
tively to the lay carers of individuals who had
recently died from cancer, and examine its accept-
ability to carers through conduct of a postal survey.
Justification for the approach adopted and
methodological findings relating to the question-
naire development and its psychometric properties
are reported in a companion paper.6 This paper
summarizes the substantive findings from the sur-
vey, compares them with findings from previous
studies and considers the implications for future
applications of postal surveys in assessments of the
quality of palliative care.
Methods
A sample of carers was identified through the
district death register. The questionnaire was
sent 3 months after the death to the person who
registered it. The coverage of the questionnaire is
reported in detail in the companion paper.6 Main
topics included in it were: information provision
from health professionals, care received from
community services (district and specialist nursing Table 1 Respondent characteristics (n = 156)
and general practitioner (GP) care), hospice and
hospital care; provision of equipment, and carer’s
Women
post-bereavement health and support. The data
were analysed using SPSSx,7 tests of significance Relationship to deceased:
were the chi-square (Pearson and Fisher’s exact
(two-tail)).
Age (years):a
Results
Response rate
Three-hundred-and-fifty-five individuals were
identified from the death registration certificates
over a 9-month period; 156 returned a completed
questionnaire, an overall response rate of 44%. aTwo
To minimize the burden to informants, only basic
demographic data were collected. The age and gen-
der distribution of respondents and their relation-
ship to the person who died is shown in Table 1. The
majority of respondents were women; and the
majority were aged between 35 and 64 years.
Three-quarters of respondents were either the
child or the spouse of the person who died. Over a
third of respondents had lived with the deceased
person; and most (84%) had looked after him or her
in the final year of life. Of these, 80% had done so
every day, 11% at least three times a week, 8% at
least once a week and 1% less than once a week.
Respondents identified the main tasks they carried
out as shopping (92%), paperwork (81%), house-
work (80%), administering medicines (78%), per-
sonal care (64%) and help with feeding (53%).
Views about information provision
Ninety per cent of respondents felt that they had
had the opportunity to ask doctors and nurses ques-
tions about what was wrong with the person who
died. Fewer, however, said that these professionals
had talked to them about the progression of the ill-
ness and the way the person would be affected
(74%), or felt that there had been adequate time to
discuss matters fully (62%). The majority (90%)
had not been given any written information about
the illness and treatment, although 60% of those
asked thought it would have been useful. Almost a
half of respondents (47%) thought the information
Percentage
69
Son/daughter 55
Spouse 22
Sibling 7
Other relative 13
Other 3
Under 25 1
25–34 7
35–44 24
45–54 24
55–64 22
65–74 16
75–84 6
people did not answer the question.

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278 J Lecouturier et al.

they had been given was not enough or that it was
too much about some things and not enough about
others; around a third (32%) felt the information
came too late to be useful. Respondents were asked
if they had been given information about a range of
support services available to them during the
course of the illness. Sixty-three per cent had
received information on provision of special equip-
ment, 61% on nursing care at home, 51% on finan-
cial assistance, 48% on home care, 36% on respite
care and 22% on other kinds of support. Thirty per
cent had been told about local carer support
groups.
When asked about their satisfaction overall with
information provision, 27% were very and 38% fair-
ly satisfied, 16% were fairly and 19% very dissatis-
fied. As shown in Table 2, 98% of respondents who
felt that they had received information at the right
time were also very/fairly satisfied with information
provision overall, compared with only 41% of
those given information either too early or too late
to be of use (P < 0.001). Other elements of infor-
mation provision significantly associated with high-
er levels of overall satisfaction were: the amount of
information; whether staff had talked about the pro-
gression of the illness; whether time had been
allowed to discuss matters fully; and whether there
had been an opportunity to ask questions; but not
whether information had been provided in written
form.
Contact with and views about community
nursing services
Sixty-three per cent of respondents (97) had help
from a district nurse, 34% (50) had help at home
from a Macmillan/hospice nurse and 15% (21) had
help from a Marie Curie nurse. Seventy per cent
had received help from at least one of the three
nursing services. There was no relationship
between receipt of nursing services and the age or
gender of respondent carer. Help from the nursing
services was received by 88% of those who died and
had lived with the respondent only, compared with
67% where the deceased person had lived alone and
64% where he or she lived with the carer and oth-
ers (P < 0.05). The place of the deceased person’s
death was a significant factor in relation to whether
help was received from the community nursing ser-
vices (P < 0.001): 97% of those who died in a hos-
pice received services compared with 88% in a
private household; 60% in a residential/nursing
home and 51% in hospital.

Table 2 Association between aspects of information provision and carer satisfaction

Percentage (na) very/fairly

satisfied with information P-value
Timing of information:
Right time 98 (79) <0.001
Too early/late 41 (54)
Amount of information:
Right amount 99 (65) <0.001
None/not enough 32 (66)
Enough about some things, not others 70 (20)
Staff talked about progression of illness:
Yes 80 (113) <0.001
No 21 (38)
Enough time to discuss matters fully:
Yes 86 (93) <0.001
No 31 (58)
Given opportunity to ask questions:
Yes 69 (137) <0.01
No – (3/13)
Given written information:
Yes – (12/16) ns
No 63 (133)
anis the base number on which percentages describing care as excellent/good are calculated; – represents cases where
bases are too small for percentaging (<20), raw numbers are given in brackets. Tests of significance used were chi-square
and Fisher’s exact.

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Lay carers’ satisfaction with palliative care 279

For all three services, the majority of respondents
who reported receiving help felt they had both
received sufficient help and that it had been given
at a time when it was most needed (Table 3). For all
three services, the majority of respondents felt that
the nurses spent enough time with the deceased
person and knew enough about his or her condition
and the nature of care required (Table 3). Respon-
dents receiving help from the district nursing service
were less likely to consider that nursing staff gave
‘a lot of support’ than were respondents receiving
help from the specialist nursing services (Table 3).
There were statistically significant associations
between all these factors and carers’ overall assess-
ments of the quality of services received from dis-
trict and specialist nurses (Table 4): for example,
98% of respondents who had daily visits from a dis-
trict nurse described care as excellent/good com-
pared with only 53% who had visits once a week or
less (P < 0.001). Other factors associated with over-
all satisfaction were: degree and timing of help
received, and whether the nurse spent enough time,
knew enough and provided enough support. Dura-
tion of care had no bearing on levels of satisfaction.
The percentages of respondents regarding the care
they received from the community nursing services
as ‘excellent’ ranged from 48% for district nursing
to 70% for Macmillan nursing care (Table 5).
Of the 57 respondents who received no district
nursing help, half (51%) said it was not offered, 32%
that they did not need it and 17% that they did not
want it. Just under half (46%) of respondents who

Table 3 Carer experiences of and views about nursing care

District nurse Macmillan/hospice Marie Curie nurse

(n = 96a) nurse (n = 49a) (n = 21)
(%) (%) (%)
Duration of care:
< 1 week 17 23 63
1 week < 1 month 23 22 27
1 month < 3 months 24 23 5
3 < 6 months 19 14 5
≥ 6 months 17 18 0
Frequency of visiting:
Daily 46 14 24
Two–six times per week 23 23 38
Once per week 16 35 5
Two–three times per month 5 10 0
< Two–three times per month 10 18 33

Received as much help as needed:

Yes 81 90 86
No/not sure 19 10 14
Received help when most needed:
Yes 81 90 82
No/not sure 19 10 18
Nursing staff spent enough time with patient:
Yes, spent enough 73 92 82
No, hurried over things 15 8 0
Not sure 12 0 18
Nursing staff knew enough:
Yes 78 94 91
No/not sure 22 6 9
Nursing staff gave:
A lot of support 56 80 82
Some support 29 14 9
Hardly any support 8 2 9
Not sure 7 4 0
an is the number of carers who reported receiving care; figures quoted are the lowest numbers on which percentages were

calculated.

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280 J Lecouturier et al.

Table 4 Association between aspects of nursing care and level of carer satisfactiona

District nurse Macmillan/hospice nurse

% (n ) describing care % (n ) describing care
as excellent/good P as excellent/good P
Frequency of visiting:
Daily 98 (44) <0.001 – (7/7) ns
Two–six days per week 73 (22) – (12/12)
Once a week or less 53 (30) 87 (31)
Received as much help as needed:
Yes 91 (78) <0.001 100 (45) <0.001
No – (4/17) – (1/5)
Received help when most needed:
Yes 92 (78) <0.001 100 (44) <0.001
No – (3/17) – (2/5)
Nurse spent enough time:
Yes 94 (70) <0.001 96 (46) <0.05
No/not sure – (9/25) – (2/4)
Nursing staff knew enough:
Yes 88 (75) <0.001 98 (47) <0.001
No/not sure 40 (20) – (0/3)
Level of support:
Lot of support 96 (54) <0.001 100 (40) <0.001
Some/hardly any support 55 (42) – (6/10)
aThe numbers of patients receiving care from a Marie Curie nurse were too small for this analysis to be statistically viable;
the analysis is therefore presented only for district and Macmillan nurses.
n is the base number on which percentages describing care as excellent/good are calculated; – represents cases where the
base numbers are too small for percentaging (<20), raw numbers are given in brackets. Tests of significance used were chi-
square and Fisher’s exact.

received no care from a Macmillan/hospice nurse,
and two-fifths (40%) of respondents who received no
care from a Marie Curie nurse, said it was not
offered. Around half of respondents who did not
receive help from the community nursing services
felt, with hindsight, that they would have liked it.
When asked which of a list of tasks they would have
liked help with, the most frequently endorsed activ-
ity for which help from the district nurse would have
been useful was bathing (endorsed by 78% of
respondents), followed by cutting toe nails (67%).
Most frequently endorsed for Macmillan nurses were
bathing (75%) and dressing (58%); and for Marie
Curie nurses bathing (62%) and night sitting (60%).
Views about general practitioner care
All those who had died were registered with a GP. A
fifth of them (21%) were reported by carers to have
always seen the doctor at home during the final year
of life; among the remainder, 80% were reported as
having had no difficulty in getting an appointment to
see the GP at the surgery and 20% as having had
some difficulty. The majority of respondents (83%)
considered that the GP had been willing to visit the
deceased person at home in the year before his or her
death, a view which largely appeared to reflect expe-
rience: however, 13% of carers could recall an occa-
sion during that time when the GP was asked to visit
during the day but did not come; and 7% recalled an
occasion when the GP was asked to visit at night or
the weekend but did not do so. When asked if the
deceased person’s GP had enough time to listen and
discuss matters fully, 67% felt they had, 19% felt they
had not and the remaining 14% were unable to say.
Although the majority of carers felt the GP had done
enough, just over a fifth (21%) felt he or she could
have done more to alleviate symptoms such as pain,
nausea and breathlessness.
Thirty-six per cent of carers assessed GP care
overall as excellent (Table 5). Carers’ views about
the quality of GP care overall were significantly
associated with perceived ease of getting an
appointment (P < 0.05), willingness to make home
visits (P < 0.001), time to listen and discuss matters
fully (P < 0.001), and efforts with regard to symptom
relief (P < 0.001).

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Table 5 Satisfaction with community nursing, GP, inpatient hospital and hospice care
n Excellent (%)
District nursea 96 48
Macmillan/hospice 50 70
Marie Curie 22 60
GPa 149 37
Hospitala 139 34
Hospice 33 91
ans quoted exclude a small number who did not answer the question.
Views about hospital and hospice care
Hospital. Most of those who had died (92%) had
been admitted overnight to hospital at some time
during the last year of their life for: relief of symp-
toms (59%), diagnosis (41%), and curative treat-
ment of the illness (14%). Twenty-four per cent of
the carers of those admitted for symptom relief felt
that staff could have done more to help with this.
Thirty-eight per cent felt that hospital staff were
unable to give the patient the time needed.
Hospice. A small percentage of those who died
(11%) had received hospice day care and 23% had
been admitted for hospice inpatient care. Among
carers of those admitted, overall satisfaction was
high compared to satisfaction with hospital in-
patient care (Table 5). Hospice staff were felt not to
have done enough to relieve symptoms by only 3%
of carers; and to have been unable to give the
deceased person the time needed by 3%. With
regard to the 107 individuals who did not receive
inpatient hospice care, the reasons given by
respondents were: that no one had suggested it
(56% of cases), that it had been suggested but the
patient did not want to go (18%), that no beds were
available (14%), and that there was some other rea-
son for nonadmission (12%).
Reasons for admission to hospital (diagnosis,
symptom relief, curative treatment) had no bearing
on carers’ overall assessments of care. However,
whether staff were seen as doing enough to relieve
symptoms and as giving the time needed were both
important (both P < 0.001). Both these factors were
also significantly associated with carers’ views
about the quality of inpatient hospice care (P <
0.001 and P = 0.03, respectively).
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Lay carers’ satisfaction with palliative care 281
Good (%) Fair (%) Poor (%)
30 16 6
22 8 0
32 4 4
36 12 15
34 22 10
3 3 3
Discussion
The findings reported here are derived from a
methodological project which aimed to examine the
feasibility of assessing quality of palliative care for
cancer patients using a retrospective postal survey
of lay carers. As reported elsewhere, the postal
questionnaire developed for the survey appeared to
be acceptable psychometrically; and although the
overall response rate was low (44%) the investiga-
tion showed that it could be increased to around
60% by use of a single reminder.6 Clearly, the low
response is a limitation which must be taken into
account when interpreting the findings presented
here: but based on information available to us from
the death certificates, there were no important dif-
ferences between those who responded and those
who did not.6
The sample for our survey was lay carers identi-
fied from death registration certificates and
approached 3 months after their bereavement. We
were well aware, when designing the study, that find-
ings from previous research in the area call into
question the validity of carer assessments.8–10 Both
Higginson et al.10 and Fakhoury et al.,11 for example,
have reported that levels of satisfaction among lay
carers are predicted not only by service-related but
also by nonservice-related factors, including their
psychological status post-bereavement and their per-
ception of caring as rewarding or a burden. In their
favour, however, surveys of lay carers allow identifi-
cation of samples representative of all people who
died, and not just those in receipt of services;3 and
for this reason we opted for this approach.
The results of the survey highlighted a number of
issues which were problematic for many of the car-
ers who took part. Provision of information about
the nature and progress of the deceased person’s ill-
ness was not considered satisfactory by over a third
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282 J Lecouturier et al.
of respondents. Around a quarter of carers felt both
GP and hospital staff could have done more to alle-
viate the symptoms of the illness, and a third felt
hospital staff were unable to give the time to the
patient that he or she needed. Only around a half
of carers felt they and the dying person had had a
lot of support from the district nursing service.
When asked to rate the care received from the dis-
trict nursing, general practitioner and hospital ser-
vices, a quarter described it as only fair or poor.
Our survey also highlighted clearly differences in
the perceived quality of specialist and generic ser-
vices for those dying of cancer. For example, carers
were much more likely to feel that the specialist
nurses spent enough time with the patient, knew
enough about the illness and how to treat it, and
gave a lot of support when compared to district
nurses; and these differences were reflected in their
overall assessments of each. Similarly, carers were
much more likely to be critical of the level of symp-
tom control achieved by hospital staff compared to
hospice staff and of their ability to give the patient
the time he or she needed. Again, these differences
were reflected in the differences in their overall rat-
ings of the two sources of care.
Although direct comparisons are generally not
possible, owing to the different methodologies and
foci of the various studies, our findings echo earli-
er ones. For example, Higginson et al.5 reported that
the community services were more often rated
excellent or good than hospital staff, while the spe-
cialist support team was rated most highly. Similar-
ly, in the present study, hospital care was least highly
rated, and care from the hospice and specialist nurs-
es was most highly rated.
Another important finding from the study was the
extent to which service characteristics influenced car-
ers’ overall satisfaction with the various sources of
care. This supports the recently published findings in
Fakhoury et al.11 that although nonservice factors are
significant predictors of carer satisfaction, they are of
less importance than service ones. Like Fakhoury and
colleagues, we found that with regard to district nurs-
ing care, frequency and timing of visits and the level
of support they provided were important factors con-
tributing to overall satisfaction; while for general
practitioner care willingness to make home visits, and
for hospital care adequate relief of symptoms, were
important. We also found (unpublished data) that
carer and patient characteristics were relatively
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unimportant in predicting lay carer satisfaction post-
bereavement.
While these findings are of interest in their own
right, they are also important from a methodologi-
cal viewpoint. Our study, like the Regional Study of
Care for the Dying,3 used a questionnaire derived
from the one by Cartwright et al.,12,13 with the result
that a number of items of information were com-
mon to both. Comparison of common item
responses across the two data sets indicates that our
findings, based on a postal survey, closely mirror
those obtained from the earlier interview-based
one. One potentially important difference is that a
far higher proportion of our respondents were the
child of the deceased person and fewer the spouse
than in the regional study, which may have influ-
enced respondents’ views and experiences. Howev-
er, the similarities between findings are more
marked than the differences. For example, similar
proportions of patients had received care from a
district nurse and from a Macmillan nurse; similar
proportions of carers rated district nursing, GP and
hospital care as excellent or good; the percentages
who felt that hospital staff gave the patient the time
needed, that the district nurse gave a lot of support
and that she gave enough time were also similar. If
we accept that interviews represent the ‘gold stan-
dard’ approach to obtaining such information, it is
reassuring that the findings from the two studies
parallel one another. This, we would argue, sup-
ports the view that postal surveys of bereaved car-
ers are a valid means of obtaining such information
on a routine basis and at a fraction of the costs of
carrying out an interview survey.
Since this study was carried out, the MAAG has
appointed a nurse specialist whose task it is to try
to raise awareness of the problems it documents,
and to disseminate and encourage the implemen-
tation of palliative care guidelines aimed at
addressing them. The MAAG intends to repeat the
survey as part of a programme of regular audit of
the quality of local palliative care services. We are
confident that, despite the limitations of the study,
the data reported here represent robust baseline
information against which any improvements in the
quality of care may then be measured.
Acknowledgements
We would like to thank Dr Ann Cartwright for her
support and her helpful comments on the postal
02pm242.qxd 5/7/1999 3:28 pm Page 283
questionnaire, and Dr Nick Steen for statistical
advice. All the individuals who completed the
questionnaires were recently bereaved. Our sincere
thanks go to them for helping us with this project
at so difficult a time.
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