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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

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
Address for correspondence: Dr Ann Jacoby, Centre for Health Carol McCarthy, district nurse; Mrs Eileen Murray, Audit Co-
Services Research, 21 Claremont Place, Newcastle upon Tyne ordinator, South Tyneside MAAG; Sister Jackie Richardson,
NE2 4AA, UK. E-mail: [email protected] 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-

ical care tasks.
Recent studies have revealed that despite marked The majority of studies that have attempted to
improvements in knowledge and expertise and the address the issue of patient and lay carer satisfac-
rapid expansion of specialist palliative care services, tion with palliative care are limited by problems of
deficiencies persist in the care provided for people selection bias and small sample size, so that inter-
dying of cancer in the community. Reported prob- pretation of their findings must be made with cau-
lems relate to a number of areas of care including: tion. Recently, however, the Regional Study of Care
infrequent visits to patients by health professionals for the Dying (RSCD) has produced information
involved in their care,1 inadequate control of pain from 20 nationally representative health districts in
and other distressing symptoms,2 poor communica- England and Wales, relating to 3696 deaths in total
tion,2,3 poor provision of standard resources such as and 2074 deaths from cancer.3 This national study
nursing care and equipment,4 and lack of emotion- confirms many of the findings of the smaller, local
al support for the family.2 For example, Higginson ones highlighted above. In particular, its authors
et al.5 reported negative comments from both the report that, despite increasing expertise with
patients themselves and their carers in relation to regard to symptom relief, those who were dying
communication, coordination of services and the from cancer frequently experienced symptoms
attitudes of doctors. Addington-Hall et al.4 inter- which were poorly controlled; a significant propor-
viewed the lay carers of patients terminally ill with tion were reported to have needed more help than
cancer and reported that good symptom control had they got from community services with activities of
not been achieved for all patients, there was a lack daily living; and their lay carers were often unable
of continuity of care, contact with social services was to get all the information they wanted about the
infrequent, and the supply of equipment was inad- patient’s condition when they wanted it. These
equate and ill-timed, as was the provision of infor- authors therefore conclude that there is still a
mation by general practitioners and the hospital considerable way to go before all patients dying of
services. Sykes et al.2 found that the most common cancer receive high-quality care.
reasons for dissatisfaction with community services The present study was undertaken in South Tyne-
among lay carers of cancer patients were the atti- side borough, which has a population of approxi-
tudes of health professionals, the lack of emotion- 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 To minimize the burden to informants, only basic
South Tyneside are high. Awareness of problems in demographic data were collected. The age and gen-
the provision of palliative care in the area high- der distribution of respondents and their relation-
lighted to the local Medical Audit Advisory Group ship to the person who died is shown in Table 1. The
(MAAG) the need for regular audit of services and majority of respondents were women; and the
for identification of any shortcomings. The group majority were aged between 35 and 64 years.
therefore commissioned the Centre for Health Ser- Three-quarters of respondents were either the
vices Research (CHSR) at the University of New- child or the spouse of the person who died. Over a
castle to develop and evaluate psychometrically a third of respondents had lived with the deceased
postal questionnaire to be administered retrospec- person; and most (84%) had looked after him or her
tively to the lay carers of individuals who had in the final year of life. Of these, 80% had done so
recently died from cancer, and examine its accept- every day, 11% at least three times a week, 8% at
ability to carers through conduct of a postal survey. least once a week and 1% less than once a week.
Justification for the approach adopted and Respondents identified the main tasks they carried
methodological findings relating to the question- out as shopping (92%), paperwork (81%), house-
naire development and its psychometric properties work (80%), administering medicines (78%), per-
are reported in a companion paper.6 This paper sonal care (64%) and help with feeding (53%).
summarizes the substantive findings from the sur-
vey, compares them with findings from previous Views about information provision
studies and considers the implications for future Ninety per cent of respondents felt that they had
applications of postal surveys in assessments of the had the opportunity to ask doctors and nurses ques-
quality of palliative care. 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-
Methods ness and the way the person would be affected
(74%), or felt that there had been adequate time to
A sample of carers was identified through the discuss matters fully (62%). The majority (90%)
district death register. The questionnaire was had not been given any written information about
sent 3 months after the death to the person who the illness and treatment, although 60% of those
registered it. The coverage of the questionnaire is asked thought it would have been useful. Almost a
reported in detail in the companion paper.6 Main half of respondents (47%) thought the information
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 Percentage
hospital care; provision of equipment, and carer’s
Women 69
post-bereavement health and support. The data
were analysed using SPSSx,7 tests of significance Relationship to deceased:
Son/daughter 55
were the chi-square (Pearson and Fisher’s exact Spouse 22
(two-tail)). Sibling 7
Other relative 13
Other 3
Age (years):a
Results Under 25 1
25–34 7
Response rate 35–44 24
45–54 24
Three-hundred-and-fifty-five individuals were 55–64 22
identified from the death registration certificates 65–74 16
over a 9-month period; 156 returned a completed 75–84 6
questionnaire, an overall response rate of 44%. aTwo 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 allowed to discuss matters fully; and whether there
too much about some things and not enough about had been an opportunity to ask questions; but not
others; around a third (32%) felt the information whether information had been provided in written
came too late to be useful. Respondents were asked form.
if they had been given information about a range of
support services available to them during the Contact with and views about community
course of the illness. Sixty-three per cent had nursing services
received information on provision of special equip- Sixty-three per cent of respondents (97) had help
ment, 61% on nursing care at home, 51% on finan- from a district nurse, 34% (50) had help at home
cial assistance, 48% on home care, 36% on respite from a Macmillan/hospice nurse and 15% (21) had
care and 22% on other kinds of support. Thirty per help from a Marie Curie nurse. Seventy per cent
cent had been told about local carer support had received help from at least one of the three
groups. nursing services. There was no relationship
When asked about their satisfaction overall with between receipt of nursing services and the age or
information provision, 27% were very and 38% fair- gender of respondent carer. Help from the nursing
ly satisfied, 16% were fairly and 19% very dissatis- services was received by 88% of those who died and
fied. As shown in Table 2, 98% of respondents who had lived with the respondent only, compared with
felt that they had received information at the right 67% where the deceased person had lived alone and
time were also very/fairly satisfied with information 64% where he or she lived with the carer and oth-
provision overall, compared with only 41% of ers (P < 0.05). The place of the deceased person’s
those given information either too early or too late death was a significant factor in relation to whether
to be of use (P < 0.001). Other elements of infor- help was received from the community nursing ser-
mation provision significantly associated with high- vices (P < 0.001): 97% of those who died in a hos-
er levels of overall satisfaction were: the amount of pice received services compared with 88% in a
information; whether staff had talked about the pro- private household; 60% in a residential/nursing
gression of the illness; whether time had been 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 98% of respondents who had daily visits from a dis-
who reported receiving help felt they had both trict nurse described care as excellent/good com-
received sufficient help and that it had been given pared with only 53% who had visits once a week or
at a time when it was most needed (Table 3). For all less (P < 0.001). Other factors associated with over-
three services, the majority of respondents felt that all satisfaction were: degree and timing of help
the nurses spent enough time with the deceased received, and whether the nurse spent enough time,
person and knew enough about his or her condition knew enough and provided enough support. Dura-
and the nature of care required (Table 3). Respon- tion of care had no bearing on levels of satisfaction.
dents receiving help from the district nursing service The percentages of respondents regarding the care
were less likely to consider that nursing staff gave they received from the community nursing services
‘a lot of support’ than were respondents receiving as ‘excellent’ ranged from 48% for district nursing
help from the specialist nursing services (Table 3). to 70% for Macmillan nursing care (Table 5).
There were statistically significant associations Of the 57 respondents who received no district
between all these factors and carers’ overall assess- nursing help, half (51%) said it was not offered, 32%
ments of the quality of services received from dis- that they did not need it and 17% that they did not
trict and specialist nurses (Table 4): for example, 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, considered that the GP had been willing to visit the
and two-fifths (40%) of respondents who received no deceased person at home in the year before his or her
care from a Marie Curie nurse, said it was not death, a view which largely appeared to reflect expe-
offered. Around half of respondents who did not rience: however, 13% of carers could recall an occa-
receive help from the community nursing services sion during that time when the GP was asked to visit
felt, with hindsight, that they would have liked it. during the day but did not come; and 7% recalled an
When asked which of a list of tasks they would have occasion when the GP was asked to visit at night or
liked help with, the most frequently endorsed activ- the weekend but did not do so. When asked if the
ity for which help from the district nurse would have deceased person’s GP had enough time to listen and
been useful was bathing (endorsed by 78% of discuss matters fully, 67% felt they had, 19% felt they
respondents), followed by cutting toe nails (67%). had not and the remaining 14% were unable to say.
Most frequently endorsed for Macmillan nurses were Although the majority of carers felt the GP had done
bathing (75%) and dressing (58%); and for Marie enough, just over a fifth (21%) felt he or she could
Curie nurses bathing (62%) and night sitting (60%). have done more to alleviate symptoms such as pain,
nausea and breathlessness.
Views about general practitioner care Thirty-six per cent of carers assessed GP care
All those who had died were registered with a GP. A overall as excellent (Table 5). Carers’ views about
fifth of them (21%) were reported by carers to have the quality of GP care overall were significantly
always seen the doctor at home during the final year associated with perceived ease of getting an
of life; among the remainder, 80% were reported as appointment (P < 0.05), willingness to make home
having had no difficulty in getting an appointment to visits (P < 0.001), time to listen and discuss matters
see the GP at the surgery and 20% as having had fully (P < 0.001), and efforts with regard to symptom
some difficulty. The majority of respondents (83%) relief (P < 0.001).

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Lay carers’ satisfaction with palliative care 281

Table 5 Satisfaction with community nursing, GP, inpatient hospital and hospice care

n Excellent (%) Good (%) Fair (%) Poor (%)

District nursea 96 48 30 16 6
Macmillan/hospice 50 70 22 8 0
Marie Curie 22 60 32 4 4
GPa 149 37 36 12 15
Hospitala 139 34 34 22 10
Hospice 33 91 3 3 3
ans quoted exclude a small number who did not answer the question.

Views about hospital and hospice care Discussion

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

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Lay carers’ satisfaction with palliative care 283

questionnaire, and Dr Nick Steen for statistical 6 Jacoby A, Lecouturier J, Bradshaw C, Lovel T,
advice. All the individuals who completed the Eccles M. Feasibility of using postal questionnaires
questionnaires were recently bereaved. Our sincere to examine carer satisfaction with palliative care: a
thanks go to them for helping us with this project methodological assessment. Palliat Med 1999; 13:
285–98.
at so difficult a time. 7 SPSS Inc. SPSS user’s manual. Chicago, IL: SPSS
Inc., 1990.
8 Spiller JA, Alexander DA. Domiciliary care: a
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