Collegian (2014) 21, 345—351

Available online at www.sciencedirect.com

ScienceDirect

journal homepage: www.elsevier.com/locate/coll

Families and caregivers of older people:

Expectations, communication and care
decisions
Robin Digby, MN, RN, BA a,∗, Melissa J. Bloomer, MN(Hons),
MPET, MNP, GCPET, GCDE, Critical Care Ce b,1

a
The Mornington Centre, Peninsula Health, Cnr Tyalla Grove and Separation Street, Mornington,
VIC 3931, Australia
b
Palliative Care Research Team, Monash University, School of Nursing, Hastings Road, Frankston,
VIC 3199, Australia

Received 4 June 2012; received in revised form 31 May 2013; accepted 28 August 2013

KEYWORDS Summary While family caregivers may temporarily relinquish responsibility for daily care
Families; to health professionals for the period of hospitalization, new expectations and demands are
Care-givers; placed upon them. Family caregivers can be asked to commit to new relationships with health
Care decisions; professionals, contribute to care decisions and discharge planning. For the caregivers of older
Discharge-planning; patients these new expectations may be challenging, and contribute to feelings of burden and
Older people increased stress. The aim of this qualitative descriptive study was to explore the experience of
family caregivers when their relative is an inpatient in this outer Melbourne geriatric evalua-
tion and management facility. This study found that the burden associated with the experience
of caregiving continued despite the hospitalization of their relative. The challenges faced by
families included communicating with health professionals, and being asked to contribute to
care decisions, in particular those regarding discharge planning, and managing conflict. In con-
clusion, the issues and challenges faced by family caregivers needs to be acknowledged and
considered as an extension of patient care planning.
© 2013 Australian College of Nursing Ltd. Published by Elsevier Ltd.

Introduction

There is a growing focus on improving the way that

Australian health services communicate and consult with
families and caregivers. This is reflected in the Victorian gov-
∗
Corresponding author. Tel.: +61 3 5976 9000. ernment initiative ‘Best care for older people everywhere’
E-mail addresses: rdigby@phcn.vic.gov.au (R. Digby), toolkit (Department of Health, 2011) which is a key deliver-
Melissa.bloomer@monash.edu.au (M.J. Bloomer). able in the strategic plan of the health service in which this
1 Tel.: +61 3 9904 4203. study is set. Family caregivers can experience a high level of

1322-7696/$ — see front matter © 2013 Australian College of Nursing Ltd. Published by Elsevier Ltd.
http://dx.doi.org/10.1016/j.colegn.2013.08.006
346
anxiety when their relative goes into hospital, and caregiver
resilience and support are important predictors of successful
discharge planning (Bauer, Fitzgerald, Koch, & King, 2011;
Cox, 1996; Efraimsson, Sandman, Hyden & Rasmussen, 2006;
Haesler, Bauer, & Nay, 2007) — one of many reasons that this
is essential to maintain. In the case of older people, espe-
cially those with dementia, the processes used by hospitals
to prepare families to receive them back into the commu-
nity are vital to a successful discharge. Failure to consult
and adequately communicate with the families results in
a greater risk of re-admission (Fitzgerald, Bauer, Koch, &
King, 2011; Haesler, Bauer, & Nay, 2008; Hennings, Froggatt,
& Keady, 2010).
Family caregivers are frequently called on to participate
in decision-making on behalf of their relatives. This responsi-
bility can be accompanied by feelings of burden and anxiety
and it is important to ensure that adequate support is pro-
vided to them to avoid rushed decision-making and poor
outcomes, both of which may lead to dissatisfaction with
care (Hines et al., 2011). It is particularly necessary when
the decisions are about life-sustaining treatment, as the
burden of making these decisions can have on-going psy-
chological consequences for the decision-maker (Hansen,
Archbold, Stewart, Westfall, & Ganzini, 2005). Family care-
givers can feel overwhelmed by the healthcare system about
which they have little knowledge and this can lead to
a feeling of powerlessness and the inability to influence
the decisions advocated by the clinical team (Efraimsson
et al., 2006). When communication is used effectively, bet-
ter outcomes ensue for the patient and their families, and
importantly the compassion of the staff is evident.
Many of the family caregivers of people in sub-acute
care may need considerable support to navigate their way
through the health system and to ensure that they are able
to continue as caregiver once their relative is discharged, as
they are often older and may have health issues themselves
(Haesler et al., 2008). There is a danger that vulnerable
family caregivers can feel disempowered by the health care
system, as a result of their exclusion from decision-making
and the lack of recognition for their ‘expertise’ in the care
of their relative (Bauer, Fitzgerald, Haesler & Manfrin, 2009;
Douglas-Dunbar & Gardiner, 2007; Haesler, Bauer, & Nay,
2010). In many instances older people are likely to defer to
the opinion of the health professional rather than contribute
to decision-making (Stewart, Meredith, Brown, & Galajda,
2000). The stress and anxiety felt by family caregivers when
their relative is an inpatient cannot be underestimated.
Excluding them from discussions is counterproductive as the
success of discharge is dependent on the capabilities of the
family to manage the care of the person at home. Their input
into discharge planning is therefore fundamental.
The health service in which this study was set has an
interdisciplinary care programme, which aims to promote
a cohesive interdisciplinary team approach which is focused
on person centred goals and outcomes and facilitates patient
and carer involvement in care (Peninsula Health, 2013) This
focus on person centred goals and outcomes underpins the
delivery of care to the sub-acute inpatients. The main prin-
ciples include a person-centred approach which is delivered
by an interdisciplinary team supported by best practice evi-
dence (Bourke & Edis, 2011). Person-centred care in this
facility is defined as ‘treatment and care . . . that places the
R. Digby, M.J. Bloomer
person at the centre of their own care and considers the
needs of the older person’s carer’ (Victorian Government
Department of Human Services, 2003). In this model the
perspectives of the patients and family are central to the
planning and delivery of care, and the clinical team need
to get to know the person and their circumstances beyond
the diagnosis. Effective information sharing between the
clinicians, the patients and families is essential to enable
informed choices which are incorporated and respected by
the team. To facilitate this communication, each patient and
family is assigned a clinician as ‘key contact person’ (KCP)
whose role is to liaise between the patient/family and the
team, and advocate for the patient in team discussions. Due
to the nature of shift work, nurses are less likely to under-
take the KCP role compared to allied health professionals
who are consistently available on weekdays.
No Australian studies were found which examine the
actual success of communication with families in sub-acute
care; hence this study was undertaken in a 60-bed geri-
atric evaluation and management (GEM) facility in outer
Melbourne.
Research questions
• How do family caregivers perceive the communication
with health professionals while their relative is an inpa-
tient in this facility?
• What is the family caregivers’ experience of their involve-
ment in discharge planning and decision-making for their
relative?
• What are the opportunities for improvement in communi-
cation with families as seen through their eyes?
Aim
The aim of the research is to better understand the experi-
ence of the family carers when their relative is an inpatient
in the sub-acute facility, particularly regarding commu-
nication with the clinical team and involvement in care
decisions.
Setting
The setting for this study was a 60-bed geriatric evalu-
ation and management facility which is part of an outer
Melbourne Australia health network. The majority of the
patients are admitted from the nearby acute hospital where
they have been treated for an acute illness or injury, and
many of them have multiple co-morbidities and chronic
illnesses. Orthopaedic or neurological conditions, cardio-
vascular disease including stroke, respiratory diseases and
malignancies are frequent presenting diagnoses, and the
complicating issues of dementia, diabetes and obesity are
common. The busy, noisy and unfamiliar hospital environ-
ment can exacerbate spatial disorientation and anxiety in
the person with dementia, subsequently leading to unsettled
or aggressive behaviour (Marquandt, 2011) adding additional
challenges to care. The average age of the patients is
85 and the average length of stay (LOS) is 23 days, with
approximately one third being discharged to residential
Families and caregivers of older people
care. The common goals of care in this facility are to opti-
mize mobility and function and plan for the future. Many of
the patients would have already been receiving significant
family support before admission or would require substan-
tial assistance from family or others after discharge. For
many people, decisions would need to be made about the
most appropriate discharge destination or supports needed
at home. It is therefore crucial that families and carers
are involved in these discussions so that the older person
is appropriately supported and the best outcomes are facil-
itated.
Methods and design
A qualitative descriptive design using in-depth semi-
structured interviews was used to obtain information from
family carers about their experience with communication
and their involvement in care decisions for their relative.
The topic under consideration lent itself to a qualitative
descriptive design. This approach is particularly suited to
finding answers to questions such as ‘What are the concerns
of people about an event?’ (Sandelowski, 2000). Individual
interviews were ideal for this study because interviewing
can enable the viewpoint of the participant to take centre
stage and rich information about the topic can be gained.
There is inherently significant flexibility because it enables
unanticipated responses to be accommodated and there is
the potential to explore spontaneous issues that may arise
(Ryan, Coughlan, & Cronin, 2009).
Study participants
Following approval from the human research ethics com-
mittee of the health service, purposive sampling was used
to identify potential participants. They were all family car-
ers of people who had been inpatients at the facility for at
least three weeks to ensure that they had had the opportu-
nity to experience communication with the KCP and other
members of the clinical team. Potential participants were
identified from the patient admission data and their pos-
sible inclusion was discussed with the clinical team before
approaching the family carers for an initial discussion. Peo-
ple were excluded if English was not their first language,
or if they had not had involvement in the care of their rel-
ative prior to their current hospitalization. The potential
participants were approached by the researcher and an ini-
tial explanation was given about the study in order for them
to make a decision about their involvement. All agreed to
participate and most appeared pleased to have the oppor-
tunity to share their views. The study sample consisted of 7
women and 1 man, of whom 4 were daughters, 3 were wives
and one was the son of current inpatients (see Table 1). They
are referred to by pseudonyms in this article to protect their
anonymity.
Following consent, each participant was interviewed in
a private room without their relative. The interviews were
digitally recorded, and the researcher also kept journal
notes to log information not evident in the recordings such
as body language, facial expressions and mannerisms. The
interviews lasted between 20 and 40 min.
347
The questions initially explored include ‘How have you
found the experience of your relative being a patient here?
‘Tell me about the communication you have had with the
health professionals’, ‘Have you been required to make
decisions on behalf of your relative and how have you
found this experience?’ and ‘Have you been involved in dis-
charge planning discussions?’ The intention was to stimulate
conversation about these topics rather than elicit direct
responses to the specific questions.
Data analysis
The digital recordings were professionally transcribed ver-
batim. The researchers individually read the transcriptions
several times while listening to the audio recordings in order
to become immersed in the data. The researchers then inde-
pendently manually coded the data, extracting themes using
the ‘qualitative content analysis’ method (Hsieh & Shannon,
2005). This method of analysis was chosen because it allows
the ‘meanings, intentions, consequences and context’ of the
data to be uncovered without relying on counting words and
phrases, at the same time acknowledging that the data col-
lection is influenced by the perspectives of the researcher
and the information that the participants are willing or able
to provide (Downe-Wamboldt, 1992). Both manifest content
(that which is obvious) and latent content (the underly-
ing meaning) of the text were considered (Graneheim &
Lundman, 2004). Meaning units (words, sentences and para-
graphs which contain common threads) were first identified,
then given a label and grouped with others with a similar
meaning with constant referral back to the original tran-
script for verification. They were then studied to identify
the manifest content. Further examination uncovered the
themes which demonstrate the latent content (Graneheim &
Lundman). When this process was complete the researchers
compared results, coming to an agreement about any dif-
ferences in interpretation. The themes were then discussed
and finalized.
Findings
Participants were almost universally appreciative of the
efforts of the healthcare team, however most could also
identify opportunities for improvement. The major themes
that emerged from the interviews centred on the family
caregivers’ need for consistent reliable communication and
involvement in care decisions.
• Communication is very important and being able to iden-
tify a single health professional with whom they could
address their queries and from whom they could receive
information, was seen as a strong positive.
• The burden of caregiving on family members is significant,
and many of the carers experience a high degree of stress.
• Decision-making on behalf of someone else can be prob-
lematic for some and has the potential to cause family
conflict. Not all the carers felt they had been adequately
involved in the plans for discharge.
348 R. Digby, M.J. Bloomer

Table 1 Participant details.

Date of interview Name of patient Age of patient Diagnosis Participant and relationship to patient

14th May 2012 Diane 86 #(R) hip Caroline daughter

15th May 2012 Keith 88 # ® Neck of femur Sonia, wife
16th May 2012 Jessie 84 Elective ® hip internal fixation Marie, daughter
16th May 2012 Evan 92 Stroke Natalie, daughter and Terry, son
16th May 2012 Jack 83 # (L) hip Jan, wife
17th May 2012 Morrie 77 Acute osteomyelitis ® hip Patricia, wife
17th May 2012 Harriet 94 Osteoarthritis ® heel Rhoda, daughter

The importance of communication
Those participants who were able to identify a single health
professional with whom they had regular communication
demonstrated greater satisfaction with communication than
those who could not. Having a health professional who they
knew by name, and could contact, provided reassurance and
continuity. This health professional may or may not have
been the allocated KCP.
‘She rings me after the meeting each week and I’ve kept
well up to date with what’s happening in Mum’s care . . .
whereas when Mum’s been in hospital before and I’ve
rung up, you feel they don’t really know who you’re
enquiring about’. (Caroline, daughter).
‘The social worker has been great. She even gave me her
direct line and said ‘Ring me any time’ which is amazing
— not many people say that to you, and if they do they
don’t mean it’! (Natalie, daughter).
Despite the fact that all patients and families are allo-
cated a KCP on admission, it appears that some clinicians
take on this role with more success than others.
‘I was told there would be a family meeting but it never
happened. My daughter and I were quite prepared to go
but were never invited to a meeting’. (Sylvia, wife).
‘If you asked John he’d say there’s no communication at
all’. (Jan, wife).
Not knowing what is going on with their relative can
unnecessarily escalate anxiety in the family carer.
‘I didn’t get a phone call. I had been awake worrying you
know because I didn’t think he was well enough (for a
home visit). (Jan, wife).
Most of the participants reported that they had had very
little communication with the doctors, and mostly their con-
tact with them was by chance, but they did not think they
were a source of information.
‘I have seen the doctor twice. . . but that was just lucky,
he just happened to come in’. (Rhoda, daughter).
When talking about nurses, the participants reflected
positively on the care and support provided by the nursing
staff.
‘The nurses were great and very patient with Dad
(Natalie, daughter).
But interestingly, when talking about accessing informa-
tion, participants suggested that shift work and the numbers
of nurses in the ward meant that nurses were acknowledged
for providing care, but they were not seen as a source of
information concerning care decisions, or discharge plan-
ning. This is also likely due to the fact that nurses were
less likely to act as KCP, and thus while the care provided
by nurses was acknowledged, they were not regarded as a
source of up to date information.
‘. . . if you’re getting a different nurse every day that
makes it difficult for the family to sort of ask questions:
‘how’s she going?’ you know. (Marie, daughter).
Those participants who reported spending time each day
in the hospital with their relative reported feeling better
informed, perhaps because they had more opportunity for
contact with the staff.
‘I think if the family wants to involve themselves then
they will find out everything. If they don’t and they come
once a week well, you know. . .’ (Marie, daughter).
Carer stress
Many of the family carers were older people themselves and
consequently may also have health or cognitive problems
which impact on their ability to provide care for another.
The stress involved with having their relative in hospital was
evident, and the level of commitment to their relative was
described as a burden, yet they felt compelled to be present
for their relative.
‘It’s been bloody hard. . . I was fifteen and he was sixteen
when we met. . . we’ve just sort of been us’. (Patricia,
wife).
‘It’s been very worrying and very tiring’ (Sylvia).

‘I have waved to the doctors and said ‘how’s he going?’. . .
and that’s about it. I don’t get any contact’. (Jan, wife).
‘No (I haven’t had much contact with the doctors) but I
feel well enough informed not to’. (Caroline, daughter).
The younger participants also found the experience
stressful in some instances, related not only to the health
of their relative but to their concerns about discharge plan-
ning and their other responsibilities, such as caring for their
families and work.
Families and caregivers of older people
‘It has been stressful because I’m trying to sell one house
and renovate the other . . . and I’ve got my husband. He’s
had prostate cancer and had the operation but it’s rearing
its ugly head again’ (Marie, daughter).
‘We’ve had Mum in respite and looking for a place where
both of them can go together’ (Natalie, daughter).
Many of the participants spent a considerable amount of
time in the facility while their relative was an inpatient,
with the majority of those interviewed visiting most days.
The amenities at this facility include a self-serve tea bay, a
lounge shared with the patients, and a secure garden area.
However, it was raised that this was inadequate for family
carers who spent long periods of time visiting.
‘. . .It would be great to have a little café . . . I could take
Dad there and he could have a cappuccino . . . It’s a nui-
sance too if I am here over lunchtime because there’s
nowhere to buy a sandwich’ (Natalie, daughter).
‘I think it would make it easier if there was a bit of a café
where you could buy something because I’ve been coming
in at 10 o’clock and not leaving until three o’clock. Today
I brought in a banana. . . but I just want to be with him
because he’s lonely’ (Patricia, wife).
Decision-making and discharge planning
The participants reported a variable amount of involve-
ment in discharge planning discussions. Some participants
reported that they were not given the opportunity to con-
tribute to care decisions, however not all participants saw
this as a negative, considering that the health care team
were more qualified to make the decisions than the family
caregivers:
I don’t think it’s really consulting me. It’s informing me
what’s going on. But I feel they’re the ones that know
best anyway. And I’m happy with what they’ve done so
far’ (Caroline, daughter).
‘They said she was going to be discharged on Wednesday
or today. Nobody actually told me that wasn’t going to
happen. . . I had to have my own conclusion about that’
(Rhoda, daughter).
Decision-making by the family member on behalf of their
relative was approached with ease by some participants and
trepidation by others depending on the closeness of the rela-
tionship, whether or not the wishes of the relative were
known, and the support for the decision-maker from other
family members.
‘I feel ok. Mum trusts me . . . and I’ve explained to her
what’s happened and she said yes. . .Oh, I have to think
about it you know, but is it a problem? No.’ (Marie, daugh-
ter).
Two of the participants who were comfortable that they
knew what decisions their spouse would like them to make,
had subsequent conflict with their adult children about the
decision which caused additional stress.
‘We’ve discussed where we want to go when we pass
away . . . but you don’t even think of discussing those sorts
349
of things (resuscitation). And unbeknownst to my kids I
said to the doctor ‘‘I want you to do everything humanly
possible to save my husband’’’ (Patricia, wife).
‘None of them (the adult children) have spoken to me
since. . . But I knew not to thump him or not to bring him
back to life if it was going to damage him. . . I know what
his wishes are. He never wants to be a vegie’ (Jan, wife).
Discussion
This study sought to explore the experience of the family
caregivers at a sub-acute GEM facility in outer metropolitan
Melbourne while their relative was an inpatient, particularly
in regard to communication with the clinical team, involve-
ment in care decisions and discharge planning discussions.
Findings from this study confirm that the relationship
between the family caregiver and the clinical team is greatly
valued by the families and contributes to improved satisfac-
tion with care.
Despite a robust interdisciplinary care programme which
supports an interprofessional approach to the delivery of
person-centred care, a number of the participants reported
a poor experience of communication with the clinical team
and there is likely to be a range of reasons for this. It is
probable that some clinicians have superior communication
skills and may have greater capability in this area, whereas
less experienced staff may not have as much expertise in
communication or time-management to adequately manage
this aspect of their role (Walker & Dewar, 2001); however
these issues were not directly investigated in this study. The
documentation associated with the interdisciplinary care
programme is audited regularly for compliance. The allo-
cation of a KCP is aimed at ensuring a consistent message
from the same health professional; but comprehensive and
completed documentation does not necessarily ensure that
the tasks have been achieved and this would need to be
investigated further to ascertain the reasons behind the dis-
parity. Whilst nurses may be most intimately familiar with
a patient’s day-to-day needs, their lack of involvement and
participation in the KCP role meant that families/carers did
not regard them as a source of information.
There was a variable level of comfort expressed by
the participants in regard to decision-making on behalf of
their relative. Those who felt they had a close relationship
and a good understanding of their relative’s wishes were
more comfortable in the role of surrogate decision-maker;
however two participants reported family conflict made
decision-making more difficult and complex. This may, in
some instances have to do with the changing dynamics of
decision-making in a family where the parents are becoming
older and less able (Qualls, 2000). Family members may
have a long history of dysfunctional relationships with each
other; the details of which are largely beyond the concern
of the team treating their relative (Haesler et al., 2010).
However emotional support and empathy for the family is
important, and decision-making must be handled sensitively
to ensure that opportunities for conflict are minimized
(Popejoy, 2011) and the outcome for the patient is optimal
(Winter & Parks, 2008).
All of the participants expressed their need for reliable
consistent communication from the treating team, and those
350
who were able to identify a particular staff member with
whom they had established a relationship, whether identi-
fied as a KCP or not, were more satisfied with the level of
communication.
Decision-making was seen by some participants as the
domain of the clinical team although this was not always a
source of grievance as the team were considered ‘experts’
and therefore qualified to make these decisions. Others pre-
ferred to actively concern themselves with all aspects of the
relative’s care.
Conclusions
What is most important is that family caregivers are sup-
ported in their experience as primary carer for that person,
and the burden of the caregiver experience is not under-
estimated. As stated earlier, hospitalization of a relative
can be a stressful and traumatic event for the family, and
where possible, health professionals should be working to
alleviate this stress, or at least not add to the burden.
Family caregivers should receive regular information and
updates on their relative’s condition and care priorities.
Families should not have to seek information, nor should
their level of involvement in decision-making be assumed,
with many factors contributing to a caregiver’s readi-
ness/willingness/ability to be involved in decision-making.
The caregiver must be encouraged to actively contribute
to discussions with the health care team, if they desire,
rather than passively allowing the team to make the deci-
sions without their input. Health professionals, in turn,
should seek to clarify the degree to which family carers want
to/are willing to be involved in care decisions, especially dis-
charge planning, and this should be respected. The burden of
caring for a relative is significant for many family members
and this must be considered sensitively by the health care
team. Nurses should be encouraged to involve themselves
with the patient and families beyond personal care tasks to
ensure that their perspective is considered in care decisions.
Access to amenities, including food and beverages, for visi-
tors to the facility must be provided by the hospital as many
of these family caregivers spend an extended period of time
there supporting their relative.
In facilities where similar interdisciplinary models of care
are utilized, working to ensure communication with family
caregivers is effective is of vital importance. It is impor-
tant that these aspects of care are addressed to improve the
communication, support the decision-making experience of
family caregivers, and contribute to a successful discharge
for the patients.
Implications for practice
• The allocation of a specific member of the clinical team
to be the KCP for a family is an important aspect of care
and must be supported to ensure a positive experience
for the family, especially the family caregiver.
• Regular reliable communication between the family and
the contact person is paramount to ensure that the fam-
ily is involved in decision-making and discharge planning,
as these are predictors of a successful discharge for the
patient.
R. Digby, M.J. Bloomer
• Family caregivers often need considerable support, not
only in terms of information, but also in decision-making.
Family needs should be acknowledged as an extension of
the care provided to the patient.
• Nursing staffs have considerable insight and expertise to
add to the discharge planning and decision-making pro-
cesses because of their expertise in patient care. However
the difficulties associated with nurses undertaking the
KCP role has resulted in the perspectives of nurses being
under-represented in care planning. This may be due to
the large number of nurses, their critical role in care
delivery and the logistical problems associated with their
participation in the care planning process. Further work
is necessary to ensure the insight and expertise of nurses
is equally considered.
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