Hospice at home service: the carer's perspective.

Abstract

The aim of this study was to explore the bereaved caregivers' experience of the Hospice at Home service delivered in one region of the UK.
Three hundred and ten bereaved caregivers identified by the Community Specialist Palliative Care Team or Hospice at Home nurse, who met inclusion criteria, were sent a postal questionnaire to explore their views and experiences of the Hospice at Home service. Data were collected during 2002.
In total, 128 caregivers responded, providing a 41% response rate. Most caregivers believed that the Hospice at Home service enabled their loved one's wish to be cared for and to die at home to be fulfilled. A number of suggestions were made relating to increased awareness of the service, training for staff, coordination of service delivery and bereavement support.
The bereaved caregivers were thankful for the Hospice at Home service; however, the need for practical support, increased awareness of the Hospice at Home service and bereavement support were also identified. Although the bereaved caregivers provided a valuable insight in evaluating service provision, it is acknowledged that some caregivers are often so grateful for the treatment and care received that they tend to forget or ignore their less pleasant experiences. Further research is therefore required using an in-depth qualitative approach investigating on the carers' views and experiences of accessing the Hospice at Home service.

Full text

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Support Care Cancer (2007) 15: 163–170
DOI 10.1007/s00520-006-0110-1
ORIGINAL ARTICLE
Dorry McLaughlin
Kate Sullivan
Felicity Hasson
Received: 16 January 2006
Accepted: 14 June 2006
Published online: 30 August 2006
# Springer-Verlag 2006
Hospice at Home service: the carer’s
perspective
Abstract Goals of the work: The
aim of this study was to explore the
bereaved caregivers’ experience of
the Hospice at Home service deliv-
ered in one region of the UK.
Materials and methods: Three hun-
dred and ten bereaved caregivers
identified by the Community Spe-
cialist Palliative Care Team or
Hospice at Home nurse, who met
inclusion criteria, were sent a postal
questionnaire to explore their views
and experiences of the Hospice at
Home service. Data were collected
during 2002. Main results: In total,
128 caregivers responded, providing a
41% response rate. Most caregivers
believed that the Hospice at Home
service enabled their loved one’s wish
to be cared for and to die at home
to be fulfilled. A number of sugges-
tions were made relating to increased
awareness of the service, training
for staff, coordination of service de-
livery and bereavement support.
Conclusions: The bereaved care-
givers were thankful for the Hospice
at Home service; however, the need
for practical support, increased
awareness of the Hospice at Home
service and bereavement support
were also identified. Although the
bereaved caregivers provided a valu-
able insight in evaluating service
provision, it is acknowledged that
some caregivers are often so grateful
for the treatment and care received
that they tend to forget or ignore their
less pleasant experiences. Further
research is therefore required using an
in-depth qualitative approach investi-
gating on the carers’ views and
experiences of accessing the Hospice
at Home service.
Keywords Palliative care.
Hospice at home.Family caregivers.
Bereaved caregivers’ experience.
Support by health professionals
Introduction
Palliative care involves a holistic, multi-disciplinary care
of patients with a life-limiting disease and of their fam-
ilies [1] delivered across a range of settings. In the last
decades, there has been a growing preference to die at
home [2–5] and, in response, there has been a commit-
ment internationally to increase the quality of life for the
dying person at home [6–8]. This has resulted in a wide
range of home care services being established. For
example, in the United Kingdom (UK), Hospice at
Home (HAH) service has been developed which aims to
enable people to die at home by supporting the quality of
life of patients, carers and families.
In this region of the UK, a HAH service was established
in 1997 in response to the wishes of many patients to spend
their last days in the familiar surroundings of their own
home. This service is delivered by a voluntary hospice
provider of palliative care. The service offers practical
nursing care, day or night in the patient’s home, in addition
to what is already available through the existing statutory
and voluntary services [9]. CareisdeliveredbyHAHnurses
who are qualified nurses assisted by care assistants. The
HAH nursing service is available for all patients referred to
D. McLaughlin (*)
Northern Ireland Hospice Care,
74 Somerton Road,
Belfast, BT15 3LH, NorthernIreland,UK
e-mail: dorry.mclaughlin@
nihospicecare.com
Tel.: +44-028-90781836
Fax: +44-028-90376585
K. Sullivan
North East Wales Institute,
Plas Coch Campus, Mold Road,
Wrexham, LL112AW Wales, UK
Tel.: +44-1978-293101
Fax: +44-1978-293113
e-mail: k.sullivan@newi.ac.uk
F. Hasson
Institute of Nursing Research,
University of Ulster, Shore Road,
Newtownabbey, BT37 0QB
Northern Ireland, UK
Tel.: +44-28-90366895
Fax: +44-2890-368202
e-mail: f.hasson@ulster.ac.uk

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the community specialist palliative care teams and includes
supportandcareforthepatientandfamily.Thehoursofcare
can be arranged with patients and caregivers although the
minimumlengthofstayforanurseis3h.Thereisnocharge
to patients or families for the HAH nursing service. The
HAH service aims to complement existing nursing services
such as that provided by the district nursing team and Marie
Curie Cancer Care in enabling patients with palliative care
needs to be cared for at home [9].
It is estimated that more than 100 HAH services
currently operate in the UK [10]; however, they are set to
increase in the UK in response to the NHS Cancer Plan [6].
Most studies of domiciliary palliative care focus on place
of death, cost, patterns of usage and demographic
characteristics of home care patients [3, 11–14]. Although
Tyrer and Exley [15] claim that such services play an
important role in the provision of care for people who
choose to die at home, there have been few published
evaluations of end-of-life services delivered in the home
[16] and little research has been undertaken to explore the
caregivers’ views about their experience after the patient
has died [17]. This paper reports the results from a postal
survey of bereaved carers’ views and experiences of a
HAH service in one region of the UK, undertaken as part of
an audit during the period 2002.
Background
Although many wish to die at home, in practice many do
not achieve this [18]. Home-based hospice services have
been proven to help increase the incidence of a home death
[19]. In comparison to institutional care, such services are
also reported to help increase quality of life [20] and
improve areas of pain and symptom management [13].
However, there are large variations in the provision of such
care [21], resulting in an uncoordinated approach [22],
inequality of access to generalist and specialist palliative
care services and gaps in provision of care, especially that
which is out of hours [6, 15, 23, 24]. In addition, research
has highlighted problems relating to the coordination of
care [25, 26] and a lack of communication and liaison
between professionals [27, 28], lack of awareness of
hospice services [29, 30] and problems relating to lack of
communication and provision of information and support
for patients and their carers [31, 32].
In addition, the success of home-based palliative care
usually depends on the availability and involvement of the
carer [33, 34]. Evidence suggests that carers are prone to
negative physical, social and emotional effects [35–37].
Many studies have reported the unmet needs of carers [38,
39], ranging from information that specifically addresses
the issues relevant to them at the particular time [40, 41] to
the need for physical day-to-day care help [42, 43] and
information on community resources, including domestic,
financial and bereavement support [25, 40, 44]. Such needs
are not static but, instead, the caregiver’s role changes and
evolves throughout the disease trajectory [45].
Some studies have investigated caregivers’ experiences
of home-based palliative care. For example, Broback and
Bertero [46] described the experiences of six carers of
patients with cancer and they reported feelings of insuffi-
ciency with regards to adjustment, awareness, being per-
ceived as a person, emotional effects and feelings of
uncertainty. Earlier research by Jones et al. [47] and
Eriksson and Lauri [48] found that home caregivers
reported that their own needs were underestimated by
health professionals and they often restrained voicing their
needs in favour of their loved one.
Nevertheless, it is apparent that providing palliative care
at home requires support and resources to facilitate the
situation [49].However,King etal. [22] explored 15family
carers’ experiences of out-of-hours palliative care and
found that a range of problems existed, for example, poor
provision of information, inadequate communication with
carers, difficulties in accessing night-sitter services and
inflexibility of services. This is despite previous research
reporting that a patient with advanced cancer and their
families view attention, support, continuity and commu-
nication as being extremely important in relation to
satisfaction [50–53].
In a larger Israel study, Singer et al. [17] explored 159
caregivers’ experiences, 76 of whom had access to a home
palliative program and 83 of whom had no access.
Although the home caregivers reported a financial and
emotional burden, there was a greater overall satisfaction
with the caring experience of those whose loved ones died
at home and had access to the home care program. Such
findings support earlier research which indicates that home
carers do not solely feel burdened by care giving, there is
instead a continuum of experiences ranging from full
satisfaction to dissatisfaction or extensive role strain with
care giving [33, 54].
Given the burden carried by carers, it is important to
determine how they experienced the HAH service.
Abu-saad [55] claims that studies addressing home carers’
satisfaction with care and focusing on needs assessment are
of particular importance in palliative care research. Hinton
[56] indeed suggests that ,where interviewing patients is
impossible, home carers can provide important sources of
information about the experience of advanced disease, the
extent to which the patient’s symptoms are controlled and
the response of health and social services. This paper
explores the bereaved carers’ views and experiences of the
HAH service.
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Materials and methods
The choice of family caregiver to be surveyed was made in
consultation with either the Community Specialist Pallia-
tive Care Team or HAH Nurse, based on the inclusion
criteria that the surveyed person should have primary
responsibility for home care and should be at least 18 years
of age. The nurses were also asked to use their clinical
judgement in referring carers for the study. The main carer,
often next of kin, was sent a questionnaire approximately
12 weeks after their relative’s death. They were introduced
to the study by an information letter, which explained the
purpose and nature of the research. A total of 310 carers
were sent an information letter and were asked to
participate. In total, 128 of them responded, providing a
41% response rate. No follow-up or reminder letter was
sent.
Data collection
A questionnaire was designed specifically for this study
based on the aim of the research. The content was drawn
from the extant literature and from information provided by
the HAH service, other hospice staff and experts in the
field. The items focused on experiences of using the
services, satisfaction levels with the provision of informa-
tion, staff competence and value of the HAH service to the
caregiver (see Table 1). In total, eight items were included
in the questionnaire.
An open-ended item was also included to provide an
opportunity for respondents to comment further on their
experiences, giving the opportunity to collect information
or identify areas of interest not anticipated in advance [57].
In addition, it was believed that this approach would not
allow invasion into carers’ time and would help to respect
their privacy. The questionnaires were piloted with ten
health care professionals and volunteers within the hospice
for content validity and to assess comprehension and
determine any ambiguity in the questions. The results of
this led to a modification of several questions and of the
layout of the questionnaire.
The questionnaires were deemed most suitable as they
enabled the collection of self-reported information on
people’s actions, opinions, attitudes and values. This
approach allowed the respondents to remain anonymous
and to avoid interviewer bias. It was also considered to
be reliable in that all respondents were asked the same
standardisedquestions[58].
questionnaires only provides a limited insight into the
problems, and postal questionnaires are prone to low
response rates.
However, this use of
Data analysis
The quantitative data from the questionnaire were analysed
using Statistical Package for the Social Sciences for
Windows 11. A descriptive analysis was performed on all
closed variables. As would be expected from a method
Table 1 Carer’s survey of the NI hospice’s Hospice at Home
service
Survey questions
1. Were you aware that Hospice at Home staff were involved in your
relative/friend’s care?
Yes
No
Comments
2. If yes, was the staff member(s) courteous and approachable?
Yes
No
Do not know
Comments
3. Were you satisfied with the level of support offered by the HAH
staff?
Yes
No
Do not know
Comments
4. Do you feel that the HAH service ‘played a part’ in enabling your
relative/friend to be nursed at home?
Yes
No
Do not know
Comments
5. Do you feel that the HAH staff were knowledgeable regarding
your relative/friend’s condition?
Yes
No
Do not know
Comments
6. Was the HAH service able to provide the help requested for your
relative/friend?
Yes
No
Do not know
Comments
7. Please identify a positive aspect of HAH care in your situation.
Comments
8. Please identify any aspects of the service you feel we need to
improve upon.
Comments
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using open-ended questions, additional themes emerged
from the participants’ responses [59]. Open questions were
read repeatedly and the content of each response was
subsequently analysed using the approach recommended
by Weber [60]. The themes were developed from this
analysis and they form the basis of the findings from this
study. Qualitative material was read and sentences with
identical or similar meaning were clustered together and
summarised, concentrating upon shared perceptions. The
results of this analysis are employed to provide illustrative
quotes in the “Results” section.
Ethical considerations
Ethical and managerial permission to undertake this study
was gained from the management of the hospice and the
academic chair of the Hospice Multi-Disciplinary Research
Group. This study was undertaken as part of an overall
audit of the HAH service and therefore not subject to a
local ethics committee approval. However, we acknowl-
edge that while people requiring palliative care and their
carers are a vulnerable population, this situation is
exacerbated by the lack of research into their needs [61].
To avoid undue coercion of a vulnerable population,
only those carers deemed suitable by members of the health
care professional team were approached for inclusion in the
study. The first stage involved members of the Community
Specialist Palliative Care Team acting as ‘gatekeepers’,
referring only those carers they believed were fit, both
physically and emotionally, to participate. All participants
were fully informed of the purpose of the study. Informed
consent was obtained and the participants were able to
withdraw without prejudice at any time before or during the
study. Only the research team knew the names of individual
participants and there was no reference to name or
identifying features during data analysis and report writing.
Every effort was taken to ensure that the questionnaire was
not intrusive in nature.
Results
In total, 128 family carers who had accessed the HAH
service responded to the postal questionnaire. The ques-
tionnaire comprised of items covering a variety of aspects
relating to the provision of care.
Awareness of service
When asked if carers were aware that HAH staff were
involved in the care of their loved one, 97% stated yes and
only 3% said no. However, the qualitative comments
revealed a general lack of awareness regarding the HAH
service at the start of the care period. Information about the
service had been gained from a range of sources, including
hospitals, the hospice, local general practitioners and
friends. However, some respondents were not aware of
the existence of the service nor of the benefits or role of the
service, until they met the HAH team face to face. Some
indeed only obtained access to the service for their loved
one immediately before death. This lack of awareness led
to a delay in accessing the HAH service and was reported
to have consequences for the care of their loved one:
I only wish our health centre had been aware of the
services earlier as [name of relative] needed someone
every night since he was discharged from hospital.—
respondent 04
We now feel we could have had this service at an
earlier stage rather than during the last week of my
father’s illness. Could families be told earlier about
the service?—respondent 09
Some respondents felt that there was a lack of awareness
among the general public and members of the primary
health care team (PHCT) as regards the HAH service and
its role and benefits, and they felt that this needed to be
addressed to ensure that those caring at home obtained the
benefits of this service:
I think health centres in the country should be made
more aware of this service. I don’t think it’s your
responsibility—probably just down to bad commu-
nication in the health service.—respondent 04
Home care
Some carers gave reasons as to why they cared for their
family member at home. While some stated that they did
not experience a real choice in the situation, others
indicated that they chose to provide home care to comply
with the desires of the sick person to die at home. When
asked whether HAH played a part in enabling their loved
one to be nursed at home 95% stated yes, 3% no and 2%
were unsure. A number of examples of ways in which the
HAH service enabled the respondents’ loved ones to be
nursed at home were cited. These included the provision of
a night sitting service, carer relief and reassurance and
peace of mind that their loved one was being looked after
by a specialist in the field of palliative care. Nearly all
respondents acknowledged that they could not have kept
their promise to their loved one without the help given to
them:
We couldn’t have nursed {relative’s name} at home
without HAH support and help.—respondent 76
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It would not have been possible to follow out my
mother’s last wishes without them.—respondent 32
Although 98% of the respondents recorded that they
were satisfied with the level of support offered by the HAH
service, further questioning revealed that some respondents
would have preferred more support, in relation to greater
day and night cover. Some respondents indeed described
times of uncertainty and turbulence because they did not
know what to expect. Many carers remarked on how their
homes and family relationships changed as a result of the
provision of home care. Some commented on the resulting
friendships which they and the patients had forged with the
HAH nursing staff.
When asked what the respondents felt was the most
positive aspect of HAH care, many stated that meeting their
loved one’s wish to be cared for and to die at home was
most valued. Other aspects included the availability of
daily specialist nursing care, maintaining their loved one’s
dignity, reassurance for family members, opportunity for
rest and provision of emotional support for both the patient
and their family.
Help requested
When asked if the HAH service was able to provide the
help requested for their loved one, 95% of respondents
recorded yes, 3% stated that the help was not provided
and 2% were unsure. Although the respondents cited
many examples of support being provided, in relation to
accessingequipmentfor
physical care and emotional support, some requests for
help from carers were not addressed mainly due to lack
of staff.
Some respondents did comment on the need for more
availability of the HAH service to help care for patients in
the community. Several of them reported instances of when
they needed extra support during the day and night.
However, they recognised that the service had limited
financial resources and they were grateful for any help they
received. Some carers highlighted the need for improve-
ments with regards to planning and coordinating care. This
was particularly in relation to carers and patients knowing
HAH staff attendance rota in advance to ascertain as soon
as possible if a carer was available:
the homeand providing
I realise that the amount of staff available is limited
and it must be difficult to plan for days ahead, but it
wasn’t always made clear if help was available in
advance. The breaks for the carer are of paramount
importance and it would be better if a definite
arrangement could be made say 48 h in advance.—
respondent 271
Relieving carer burden
In addition to meeting the everyday needs associated with
caring for an ill family member, the respondents reported
that the HAH service helped ease their burden by providing
them with physical, emotional and social support. This
aspect of care was valued by nearly all the respondents in
the sample, who reported that the support they obtained
from the service enabled them to continue to care for their
loved one at home. Some stated that without such support
for themselves, they would not have been able to cope:
I could not have coped at home on my own without the
support afforded to me by HAH. The family was
beginning to suffer from ‘sitting up’since HAH came
along at the right time to enable us to keep mother at
home.—respondent 235
We could not have coped without their support both
mentally and physically; we could not have managed
without them.—respondent 37
The HAH service provided help not only for my
mother, but help support, advice and encouragement
to her immediate family.—respondent 68
HAH staff
The majority of respondents (98%) reported that the HAH
staff members were courteous and approachable. In times
of uncertainty and high emotional distress, this helped to
relieve tension and enhance the care provided:
Everyone with whom I came in contact were warm,
friendly caring and professional and didn’t feel like
strangers in my home.—respondent 68
Once they became involved we felt they were very
helpful and approachable and honest in the informa-
tion requested of them.—respondent 09
In total, 94% of the respondents felt that the HAH staff
were knowledgeable regarding their loved one’s condition,
4% stated they were not and 2% were unsure. The
comments were made regarding the high level of knowl-
edge of the patient’s condition among HAH staff and this
was attributed to good collaboration and communication
with members of the PHCT. In addition, some respondents
perceived HAH nursing staff to have higher levels of
expertise, especially in relation to the management of
illness and pain control, than the other members of the
PHCT, for example, the general practitioner. The HAH
staff’s competence was commonly cited as having signif-
icant impact on satisfaction levels.
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Some respondents identified areas for HAH staff
training which included specific skills training for frail
elderly patients who are cognitively impaired, as one
respondent felt that the HAH staff were not equipped with
the skills necessary to deal with this condition. One
respondent commented on the need for care for the family
after bereavement and indicated that the care they had
received had been limited which was disappointing. Other
respondents, meanwhile, felt the need for greater commu-
nication and contact with carers, for example:
I feel very strongly that more information about the
procedures regarding pain relief should be given to
the carer by the hospital before their relatives are
discharged. If I had received a leaflet, because I have
no medical knowledge, I would have known what to
expect.—respondent 38
After a loved one dies, have more contact with
relatives.—respondent 156
Most respondents, however, felt that no improvements
could be made to the service they received and stated how
grateful they were for having accessed the service as this
assisted them to care for their loved one at home.
Discussion
Previous research has suggested that the involvement of
Hospice at Home services promote the likelihood of home
death [62, 63]. Although a growing number of people with
advanced progressive disease prefer to die at home, caring
for someone at the end of life in their own home may
become a great challenge for their carers. Specialist HAH
services have an important role and often aim to maximise
the amount of time spent at home, if this is what the patient
and family wish [15, 64]. This study has shown that the
carers believe that the HAH service has helped them meet
the wishes of their loved ones by providing physical and
emotional support to both the patient and the family. Exley
and Tyrer [65], in their UK evaluation of a HAH scheme,
similarly reported that the bereaved carers were very
positive about the care delivered by HAH service.
Nevertheless, some barriers to an adequate service
remain. For example, several respondents reported experi-
encing some levels of fatigue before accessing the HAH
service and only gaining access to the service immediately
before death. Brazil et al. [66] found similar findings and
recommended that the people who want to die at home
should be able to access palliative home care earlier then
they currently do. The carers also reported a lack of
awareness of the HAH service, which meant that some
respondents only accessed the service at a later stage in
their loved one’s illness. This finding is concurrent with
previous research which also reports a lack of public
knowledge and awareness of hospice services [30]. In
addition, the carers also mentioned the lack of coordination
of service and not being aware if the service was available
for the times requested. The issue of little coordination or
integration of services among providers has been reported
elsewhere [22, 24]. It is acknowledged that a lack of
coordination and inflexibility of services could result in
increased stress on the patient and the caregiver.
Whilst previous research has highlighted the negative
impact of care giving [38,39],the carers in this study report
the social, physical and emotional support they obtained
from the HAH service. However, one barrier to providing
care for carers is to recognize that carers are also patients in
the palliative care process. As carers of patients receiving
palliative care are profoundly affected by the challenges of
the illness and play a central role, it is important that
attention is given to their needs. Data from the present
study indicated that carers regret not asking for more help
and support, a finding also found by Stetz and Hanson [67].
A number of recommendations for improvements in HAH
service delivery were made, for example, additional
training and the need for coordination and increased
awareness of the service. The findings from this study also
highlight the current needs of carers which are not being
supported both in terms of practical and bereavement care.
This finding is similar to that of Jansma et al. [44] who
reported that carers expressed a need for bereavement
support after the patient had died. However, as Morris and
Thomas [68] report, the caregiver’s needs are often
overshadowed by concerns about the patient’s comfort,
practical care, information needs and emotional support.
The carers overall reported positive feelings, for
example, feelings of accomplishment in meeting their
loved one’s wish to die at home, which they attributed to
having had the support of HAH to achieve this. The
findings of this study are consistent with previous studies
reporting the positive accounts that carers report on care
delivered by HAH services [65].
Limitations of the study
The study undertaken was in essence a small-scale
exploratory project on one HAH service and the external
validity of the findings is therefore low. In extrapolating
these findings, it is important to remember the character-
istics of the study population. Only those who accepted
HAH were eligible for entry to the study and so may
represent a biased group. In addition, the following three
issues need to be taken into account when reading these
results: first, the ‘gratitude barrier’ [13, p 330] which refers
to the fact that the carers are often so grateful for the
treatment and care received that they tend to forget or
ignore their less pleasant experiences; second, the bereaved
carers were identified and recruited via the service
providers, therefore, it is possible that some carers who
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may have been more critical were not included, a limitation
also reported by Exley and Tyrer [65]; and third, the carers
were contacted 12 weeks after the death of their loved one
and, therefore, their responses may be subject to recall bias.
Finally, this research did not record caregiver character-
istics; therefore, an analysis of these aspects could not be
provided. Nevertheless, this study does illustrate the value
of recording the views of bereaved carers in providing an
insight into the experiences of access, impact and areas of
improvement for HAH services.
Conclusion
While the findings of this study cannot be generalised, they
add to the growing body of research about HAH services.
The carers expressed satisfaction with the quality of the
care they had experienced, but did identify areas of
improvement in coordination of service delivery and the
need for continued support after the death. In addition, this
paper also illustrates the value of exploring the bereaved
carers’ views about end-of-life services in providing an
insight on the complexity surrounding death at home.
It is important to remember that caring for a patient with
advanced progressive disease at home involves a consider-
able commitment on the part of family carers and attention
must be given to the carers’ needs as well as those of the
patient. The results of the study and the literature support
the need to focus attention to support families and carers
throughout and well beyond the care process. Positive
outcomes predominated overall and the bereaved family
members reported satisfaction with having provided care
for their loved one who had died.
Acknowledgements
Spence, Beverley Craig, Kathy Roddy and Sandra Fulton from the
Hospice at Home service for their contributions to this paper.
We would like to acknowledge Allison
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