Brain Injury, March 2009; 23(3): 192–202

Goal planning for adults with acquired brain injury:

How clinicians talk about involving family

WILLIAM M. M. LEVACK1, RICHARD J. SIEGERT2, SARAH G. DEAN1,

& KATH M. MCPHERSON3
1
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Rehabilitation Teaching and Research Unit, Wellington School of Medicine and Health Science, University of Otago,
Wellington, New Zealand, 2Palliative Care, Policy and Rehabilitation, King’s College London, UK, and
3
Division of Rehabilitation and Occupation Studies, Auckland University of Technology, Auckland, New Zealand

(Received 25 September 2008; revised 11 December 2008; accepted 13 December 2008)

Abstract
Primary objective: Although family involvement is frequently identified as a key element of successful rehabilitation,
For personal use only.

questions remain about ‘how’ clinicians can best involve them. This study explored how clinicians talk about the
involvement of families in goal-planning during rehabilitation of adults with acquired brain injury.
Research design: Qualitative study drawing on grounded theory to elicit practitioner perspectives.
Methods and procedures: Nine clinicians from a range of professional backgrounds were interviewed. Interview data were
transcribed and analysed using the constant comparative method of grounded theory. NVivo software was used to assist
with data management.
Main outcomes and results: While family were often considered valuable contributors to the goal-planning process, they were
also seen as potential barriers to the negotiation of goals between clinicians and patients and to patient–clinician
relationships. Clinicians described restricting involvement of family members in situations where such involvement was
thought not to be in the best interests of the patient.
Conclusions: Goal-planning appeared patient-centred rather than family-centred. Further, clinicians identified concerns
about extending family involvement in goal-planning. If clinicians intend to address the needs of family members as well as
patients, current approaches to goal-planning (and rehabilitation funding) may need to be reconsidered.

Keywords: Goal setting, family, rehabilitation, stroke, traumatic brain injury,

Introduction support the rehabilitation team if they have been

The concept of family involvement in goal-planning
for rehabilitation of adults with disabilities is not
new. As far back as the early 1970s, clinicians have
been advocating for strategies to maximise the
participation of family members in goal-planning
for individual patients [1]. Indeed, it is common-
place nowadays to hear family members described
as being an integral part of the rehabilitation team
[2–5]. There have been a number of arguments put
forward in favour of this. It is believed that family
members are more likely to be willing and able to
involved in decision-making processes such as goal-
planning from the start of rehabilitation [1, 6–9]. It
has also been suggested that family members are in
a good position to assist patients with the transfer
of skills and knowledge acquired in the inpatient
environment to the home setting [1, 10]. Further-
more, the involvement of family members in goal-
planning has been raised as a strategy for early
identification of family expectations regarding
patient outcomes, allowing debate of these expecta-
tions to occur if need be [1, 7, 11, 12]. Finally, it has

Correspondence: Dr William Levack, Rehabilitation Teaching and Research Unit, University of Otago (Wellington), PO Box 7343, Wellington South,
New Zealand. Tel: 64-4-385 5591 ext 6279. Fax: 64-4-389 5427. E-mail: william.levack@otago.ac.nz
ISSN 0269–9052 print/ISSN 1362–301X online ß 2009 Informa Healthcare Ltd.
DOI: 10.1080/02699050802695582
 Goal planning for adults with acquired brain injury
been suggested that family members can represent
patient perspectives on goal-planning in situations
where patients are not capable of advocating for
themselves (due to severe cognitive or communica-
tive impairments for instance) [12–16]. Thus, it is
not surprising to find a survey of rehabilitation
providers in the UK reporting that 95% of services
claimed to be involving family members as well as
patients in the process of goal-planning ‘wherever
possible’ ([17], pp. 473–474).
In New Zealand, where the study reported in this
paper was conducted, there is also a cultural
requirement to include family members in the
delivery of health services. In general, New
Zealand M
aori consider wh
anau (the extended
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family) to be the foundation of their society and a
cornerstone of their health and wellbeing. Thus, in
2002, when the New Zealand government released
its ‘He Korowai Oranga: M
aori Health Strategy’, it
was unsurprising to see ‘wh
anau ora’ (family well-
being) as the overarching aim of the strategy [18].
This document further reinforced the need to engage
primarily with families rather than individuals when
M
aori people are recipients of health care services
in New Zealand. This emphasis on wh
anau ora
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rather than solely individual health has again been
reiterated in New Zealand’s clinical guidelines for
traumatic brain injury [5] and stroke [2].
In contrast to the strength of rhetoric regarding
family involvement in goal-planning, there is some
evidence that rehabilitation services in Western
countries do not in fact prioritise the involvement
of families nor empower family members to become
active partners in the rehabilitation team. One
observational study of a rehabilitation unit in the
UK found that family members were only involved
in goal-planning for 4% of cases involving people
with stroke when ‘usual practice’ was followed.
Moreover, even after the implementation of exten-
sive strategies to enhance the involvement of family
members, this was only increased to 20% of
admissions [19]. Similarly, a recent telephone
survey of 1755 clinicians in Canada reported very
limited emphasis on family-related concerns in
comparison to patient-specific problems in post-
stroke rehabilitation [20]. In this study, when
presented with a vignette describing a clinical case
that included reference to familial concerns, only one
third of the participating clinicians identified a
family-related problem associated with the case and
less than 1% referred to the possibility of using a
standardised assessment of family functioning or
family burden [20].
In light of these studies it is interesting to note that
despite the apparent importance attributed to family
involvement, there appears to be very few guidelines
regarding exactly how clinicians should engage with
193
family members around goal-planning in rehabilita-
tion for adults with disabilities. Indeed, many papers
that discuss the issue of collaborative approaches to
goal-planning do so without any mention of family
involvement at all [21–35], while those that do
mention it often provide very little guidance as to
how the involvement of family members in goal-
planning can or should differ from the involvement
of patients themselves [36–43].
In texts on goal-planning in rehabilitation there is
often a clear orientation towards setting goals for
patients rather than for families. In fact, some
authors have explicitly advocated against identifying
the goals for family members. Randell and McEwen
[16], for instance, stated: ‘Functional goals focus
on the individual receiving physical therapy
care . . . Although family members and significant
others may be involved in goal setting and with the
patient’s care, goals may involve them, but they are
not the focus of the goal’ (p. 1200). Likewise
McMillan and Sparkes [10] stated that: ‘The client
is the patient, who must remain the focus for the
rehabilitation at all times . . . goals may involve the
patient and the relative but there cannot be LTGs/
STGs [long term goals and short term goals] which
are set for relatives/carers to achieve alone, indepen-
dently of the patient; these would be plans of action’
(p. 244).
In contrast to this, a few authors have more
recently promoted greater involvement of family
members in rehabilitation processes in general [6–8,
44]. Some authors have endeavoured to develop
theoretical models for greater collaboration with
families around rehabilitation planning [6, 7], have
advocated for a family-centred approach to adult
rehabilitation [8] or have begun to explore the
concept of empowering families to maximise their
participation in the delivery of rehabilitation services
[44]. However, it would appear fair to suggest that at
present these papers are the exception and that there
is a general tendency in the literature on goal-
planning in adult rehabilitation to focus primarily on
the person with the disability rather than on their
whole family.
The aim of this current paper was to explore the
concept of family involvement in goal-planning from
the perspective of clinicians who provide rehabilita-
tion services for adults with stroke or traumatic brain
injury. Data for this paper was derived from a
grounded theory study which examined how health
professionals talked about their beliefs and experi-
ences of goal-planning in rehabilitation for people
with acquired brain injury. The primary results from
this broader investigation related to the values and
purposes that the clinicians attributed to goal-
planning and have been reported elsewhere [45].
However, substantial data relating specifically to
 194 W. M. M. Levack et al.
family involvement in goal-planning also emerged
from this study and merited further analysis,
the results of which are reported below. Grounded
theory has a particular value in this area of
scientific inquiry as it is an approach that has been
recommended when researchers are seeking new
perspectives on actions and processes in a social
context [46, 47]. As such, it was appropriate
for investigating how clinicians talk about family
involvement in goal-planning for rehabilitation
where, to date, little is known.
This study also follows on from two published
appraisals of the literature which have investiga-
ted the hypothesised purposes and mechanisms
(or modes of action) of goal-planning in rehabilita-
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tion [48] and the effectiveness of goal-planning
to improve health outcomes following
rehabilitation [49].
Method
Research design
This study involved the use of grounded theory
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methods [50] to collect and analyse data from semi-
structured interviews with clinicians (from a range of
professional backgrounds) regarding their beliefs,
perceptions and experiences of goal-planning in
rehabilitation for adults with acquired brain injury.
A Regional Ethics Committee gave approval for this
study to be conducted.
Participant selection and recruitment
Initially, organisations with established reputations
as providers of rehabilitation services for people with
stroke and/or traumatic brain injury were contacted
and asked if they would be interested in participating
in this study. Managers in these organisations were
asked to provide names of clinicians who might be
available for interview on the topic of goal-planning
in rehabilitation. To be included in the study,
participants needed to be clinicians who had
experience with the planning of rehabilitation goals
for people in their service. Participant selection was
based upon purposeful sampling [51] to ensure that
participants represented a wide range of key char-
acteristics such as professional background, number
of years of work experience, location of work
(inpatient, outpatient and community settings) and
place of employment (public and private organiza-
tions). As the research developed, theoretical sam-
pling [51] was used to ensure that issues arising from
earlier interviews could be subsequently explored in
more detail with the appropriate interview
participants.
Data collection
Data collection involved the taping and transcription
of semi-structured interviews with the participating
clinicians. (See the Appendix for a key to transcrip-
tion conventions used in this paper.) The individual
participants provided signed consent before their
interview. The interviews were private and confi-
dential, with pseudonyms to identify each partici-
pant in the transcripts. Each interview lasted for

60–90 minutes and occurred at a place of the
participant’s choosing. Interview questions were
open-ended, with an iterative approach to the
selection of topics for each interview format. In
other words, following the constant comparative
method of grounded theory [50], the analysis of
initial interviews informed and influenced the types
of questions and topics for discussion in the
subsequent interviews. Data specific to this paper
arose when participants responded to broad inter-
view questions with spontaneous stories, anecdotes
or opinions that related to the involvement of family
members in the establishment or use of goals in the
clinical setting. Some planned questions and
prompts were however also used to elicit further
information on the topic of family involvement in
goal-planning. These included questions such as ‘tell
me about involving families and carers in goal
setting?’, ‘what is the purpose of involving family
members in goal setting?’, and ‘what are the
challenges of involving family members in goal
setting?’
During the interviews, data were also collected
concerning the demographic characteristics of the
interview participants. This included information
about the interview participants’ gender, profes-
sional background, years of employment in the
health sectors, years of experience working in
rehabilitation services and the context of their
current employment. An ‘interview log’ was also
completed following each interview to record the
primary researcher’s observations on each session
and personal responses towards the interview.
A follow-up phone call was occasionally required
to check or clarify information provided by the study
participants in the interviews.
Data analysis
Data analysis occurred concurrently with data
collection. The computer software NVivoÕ
(Version 2.0.163) was used to help organise and
manage the interview data and the associated coding
of transcripts. Coding and categorisation of inter-
view transcripts followed the constant comparison
method of grounded theory [50]. In other words,
each transcript was read and coded, with subsequent
re-reading and coding incorporating findings from
 Goal planning for adults with acquired brain injury
additional interviews. Initial coding (open coding)
was undertaken on a line-by-line basis. Often these
codes used the exact words and phrases from the
interview transcripts. The relationships between and
within categories emerging from this coding were
explored with increasingly higher levels of coding
and conceptualisation. Data were progressively
moved to more abstract levels with the identification
of emerging theoretical constructs. These were
explored in more detail with the use of memo
writing and diagrams. Data collection occurred until
data saturation was reached—in other words, until
new interview data revealed ‘no new direction, no
new questions, and . . . no need to sample further’
([51], p. 174).
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All interviews were carried out by one researcher
(WL). Debriefing with other members of the
research team after each interview as well as negative
case analysis—the purposeful exploration of
‘instances that do not fit the emerging model’
([51], p. 174)—were used to establish the credibility
and trustworthiness of the emerging theory.
Independent review and coding of the interview
transcripts by a second researcher (SD) was used to
help ensure that the themes highlighted in the
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analysis did in fact arise out of the data, instead of
being imposed on it [50]. Review and discussion of
interview transcripts by the research team also
provided guidance to the primary researcher regard-
ing interview technique.
The results from this analysis are presented below,
with extracts from the interviews to illustrate the key
findings. Pseudonyms have been used in these
extracts to replace the participants’ real names.
Results
Participant characteristics
Nine clinicians were interviewed from three differ-
ent inpatient brain injury units. The sample
included one physiotherapist, three occupational
therapists, two speech language therapists, two
registered nurses (one of whom was a clinical
nurse specialist) and one clinical psychologist. Four
of the participants had between 1–5 years experi-
ence working in clinical rehabilitation, four others
had 6–10 years experience and one participant had
over 15 years experience. Most, however, had many
more years experience working in health care
environments that were not specifically related to
brain injury rehabilitation. All of the participants
were women and all were of New Zealand
European ethnicity. These latter characteristics
(gender and ethnicity) were not used to influence
the purposeful sampling of interview participants
and hence reflected the predominant cultural group
195
working in New Zealand rehabilitation services at
the time of the study.
In addition to their own clinical involvement, all
participants also worked as a ‘keyworker’ in their
organisations. While responsibilities of the ‘key-
worker’ role differed slightly from service to service,
in all situations it involved a component of liaison
between the patient, the family and the rehabilitation
team and a component of overall rehabilitation
planning, including discharging planning. Thus, all
participants had experience of being accountable to
family members for the overall quality of rehabilita-
tion service delivery.
The field researcher (WL) had worked with three
of the nine interview participants prior to data
collection, last working with them between 2–4
years before the start of the study. Two of these three
participants, however, had since moved workplaces
and were working for services that this researcher
had no previous involvement with. The researcher
knew none of the other six participants prior to data
collection.
The results of this study will be presented in two
sections. The first section explores the purpose of
family involvement in goal-planning (from the
perspective of the clinicians), presenting common
themes related to how clinicians involve family
members and to what ends. The second section
explores the perceived tensions arising from involv-
ing family members in goal-planning and the
clinicians’ responses to these tensions.
Purpose of family involvement in goal-planning
In general, the opinions of the clinicians regarding
the purpose of family involvement in goal-planning
echoed the sentiments voiced in the current litera-
ture [1–16]. For instance, some clinicians were
explicit in their identification of family members as
being part of the wider rehabilitation team. Family
members were thus considered an integral part of
goal-planning because they were part of the group
who were working together during the rehabilitation
process:
Researcher: So who is goal setting for?
Participant: It’s for the whole team, which includes
patient and family (Tania).
There were a number of more specific reasons
that the clinicians valued the involvement of family
members in goal-planning. Family involvement
in goal-planning was considered important because
it provided an opportunity to educate families
about rehabilitation principles and practice.
Discussion of goals and goal-planning with families
was deemed to help persuade them to ‘buy into’
 196 W. M. M. Levack et al.
(i.e. understand, endorse and support) the rehabi-
litation process. As a result of this ‘buy in’, family
members were thought to be more able to assist
with encouraging patients to engage in and
persevere with prescribed clinical and therapeutic
activities.
So if you start that off from the beginning, well
ok, that’s what you’re aiming for, this is what we’re
going to do about it, does that sound ok, then you’ve
already got their buy-in, so they [the patient] are
going to try hard, and the family knows what’s going
on . . . you can get their involvement as well . . . they’re
part of the team too, so it’s all part of the buy-in
process (Diane).
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It was also suggested that early discussion of
goals and goal-planning could reduce the chance
of unexpected conflict arising with family members
during the latter stages of rehabilitation, particu-
larly during the discharge process. While clinicians
stated that they sought the views of both family
members and patients regarding the outcomes they
hoped could be achieved in rehabilitation, there
were aspects of rehabilitation that could not be
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altered. Such aspects included factors associated
with service delivery (e.g. the extent to which
clinicians could prolong a patient’s inpatient
rehabilitation given resource limitations) and neu-
rophysiological recovery (e.g. the maximum func-
tional gains that could be made given the extent
and severity of an individual’s injury or illness.)
The participants argued that involvement of family
members in discussion of such issues allowed
earlier opportunities to raise concerns or debate
issues.
Personally speaking, I think it saves a lot of fire-
fighting down the track . . . just that whole commu-
nication thing. If you’re being open and talking to the
patient right from—and the family—right from
the beginning, there won’t be any surprises down
the track, like ‘What do you mean the patient’s
coming home like this?’ or ‘What do you mean that
they can’t come home?’ If you’ve got the whole
process laid out, and goal-setting as I say, is the
beginning point of that, then it saves all the nasty
surprises down the track (Diane).
Family involvement in goal-planning was also
suggested as a way of allowing and supporting
family members to retain hope. However, it was
argued that clinicians had a concurrent responsibility
(to patients as well as to family members) to ensure
that this hope was realistic. Thus, discussion of goal-
planning and involvement of families in the evalua-
tion of progress towards goals was considered a
means of assisting family members to adjust
emotionally to the consequences of a patient’s
injury or illness.
I think that in many respects actually, the goals are
possibly more of a reality check for the family . . . it’s a
tricky balance between hope and um, and acceptance
of what is going happen (Elaine).
Goals were often used to structure discussions
during meetings between the clinical team and the
family. Usually such meetings would progress with-
out incident, but occasionally, when families pre-
sented with pre-existing problems or conflict (either
within the family itself or with some external
individual or agency), goal-planning was seen to
serve a very specific function. In this case, discourse
around goals was used to limit the agenda of the
meeting, directing the discussion back towards issues
deemed (rightly or wrongly) more relevant to
clinicians, thus avoiding issues that the clinicians
felt unable to address.
We often base, like, our family meetings around
the goals . . . I think they are quite central really,
yeah—we get quite difficult families in here some-
times and um it’s quite a good way of just bringing the
meeting back to, you know, the focus of why we’re
there, and not getting caught up in other issues, yeah
(Heather).
Finally, as has previously been suggested in the
literature [12–16], family involvement in goal-
planning was recommended when patients were
unable to represent their own perspectives on
issues such as the types of outcomes that they
valued and wished to work towards. Family mem-
bers in these contexts were described by the
clinicians as being a source of information about
the patients’ life before hospitalisation and as being
useful proxy goal-setters while patients were reco-
vering from the acute consequences of their injuries
or illness. Sometimes the need for family members to
set goals on behalf of patients was driven by the
presence of severe cognitive or communicative
impairments, but equally it was suggested that
family members could become more actively
involved in goal-planning when a particular patient
was feeling overwhelmed by the implications of
a newly acquired disability.
Obviously you know when people come into rehab,
and they come in the very early stages, they’re not able
to understand—it’s such a shock that’s happened to
them, that’s very difficult for them—to actually grasp
for them what a goal actually is, so families are very
much part of that, setting the goals, and they may
often be family goals before they’re the patient’s goals
(Christine).
 Goal planning for adults with acquired brain injury
In circumstances where family members set goals
on behalf of patients, the clinicians described
strategies they used to ensure that, to the best of
their knowledge, the identified goals accurately
reflected the views of the patient. One strategy was
to recruit a family member to be a proxy goal-setter
(as described above), but then to check, as much as
possible, that the patient endorsed the selected goals.
Another technique was to reassure patients (and
family members) that goals could be altered if the
patient changed their mind at a later date.
Particularly if someone’s had a great big TACIy—
a big stroke—and the whole concept of even thinking
of a goal is just beyond them, we explain or talk with
their family with them present, and we’ll say to
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them—you know, your family has made this decision
on your behalf, are you happy with this? And some of
them—most of them—would say yeah that’s, that’s
fine if they’re able to communicate or [able to]
indicate that they are [fine with that goal] (Emma).
Thus, family involvement in goal-planning was
described as being a common part of the rehabilita-
tion process and certainly something that the
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clinicians aspired towards. At the same time,
however, the majority of the clinicians described
significant problems that could occur when involving
family members in goal-planning and in these
circumstances strategies were sometimes employed
to curtail such family involvement. Tensions arising
from family involvement in goal-planning and the
clinicians’ response to these challenges are discussed
below.
Tensions arising from family involvement
in goal-planning
While family members were described as being
valuable contributors to the goal-planning process,
they were also viewed by the clinicians as being
sources of potential disruption. Family members
were seen to enter the rehabilitation environment
with their own agendas and emotional responses to
the events associated with a patient’s illness or
injury. This meant that the family members’
objectives for rehabilitation or desired timeframes
for recovery did not always match what the clinicians
themselves considered realistic.
Families really have aims, they don’t necessarily have
goals . . . they’re looking at very global things, they’re
looking at my person being the same as they were
before the accident, and so there’s more likely to be
a—well, this doesn’t seem to be a very hard thing to
achieve, you know, just to walk 10 metres, we want
yTotal Anterior Circulation Infarct (TACI).
197
them to be running and playing football again
(Emma).
The needs and expectations of family members
did not of course become a problem if the family
could be convinced, through discussion and educa-
tion, that different types of goals might be more
realistic in the clinical setting. However, when a
family member’s perspective on goals could not be
aligned with the objectives of the team, the clinicians
considered that family member to be a potential
barrier not only to the establishment of clinically
relevant goals but also to the development of a good
working relationship with the patient. Some clin-
icians felt that on occasions family members could
disproportionately dominate the goal-planning pro-
cess, setting goals to address their own feelings of
loss rather than goals that were necessarily in the best
interests of the patient. Furthermore, it was sug-
gested that if this happened, patients were at risk of
being caught between what their family wanted them
to do and what the rehabilitation team was
recommending.
Something that really annoys me—often goals
have been set that are totally unrealistic because a
family member has wanted them to be goals, and
they’ve pushed the client to have that as a goal, and
it’s been actually quite detrimental a lot of times . . . I
think the client ends up being ‘piggy in the
middle’ (Sara).
In this regard, the clinicians stated that they felt
responsible for protecting their patients from experi-
encing additional stress resulting from their family’s
expectations for rehabilitation. There were a few
strategies that the clinicians employed to address this
problem. One such strategy was to try influencing
the family members’ perspectives regarding what
should be the immediate focus of rehabilitation. This
approach included reframing the family members’
goals as ‘long-term’ objectives, with the clinicians’
preferred goals being presented as the initial ‘steps’
that needed to be addressed first.
They [the family] are wanting them to do more, more,
more, and we’re saying yes, that’s later, but this is
where we are at the moment—that is what I mean by a
reality check, and protecting the person from too
much of that kind of expectation and stress from their
family, which can be quite a big issue (Elaine).
However, in situations where the clinicians felt
unable to address the family members’ expectations
in this way, a simpler strategy was to simply avoid
engaging with the family at all.
 198 W. M. M. Levack et al.
I think we commonly avoid it [family involvement in
goal-planning] because so often families are comple-
tely unrealistic about what you are going to be able to
do for them and achieve that they kind of don’t—
yeah, they don’t get it (Tania).
As an example of this strategy, one clinician
described a situation where there was a difference
in opinion between herself and the wife of a patient
regarding the patient’s preferences for rehabilitation.
This situation was complicated by the patient being
extremely dysphasic. The clinician, who was a
speech language therapist, had expertise in commu-
nicating with people with language impairments.
The spouse, however, had the benefit of having lived
with the patient for several decades prior to his
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stroke and naturally felt she knew what the patient’s
true wishes were. When the clinician came to believe
that the wife was not accurately representing the
goals of the patient, her response was to limit all
further involvement the wife had in the goal-
planning process. Again, in the context of this
particular case, reference was made to family
members having their own agendas that do not
necessarily fit with what the clinicians perceived to
For personal use only.
be the priorities of rehabilitation at a particular point
in time.
You get occasional family members, like we’ve had
one now who doesn’t want her husband to be in
rehab, but he wants to be there, but he can’t speak at
all, and can’t communicate . . . so she’s saying he want
to go home, oh, he really wants to go home, but he’s
indicated—like through communication pictures—on
a number of times that he really wants to stay in
therapy . . . so in some cases I think it’s almost a case
of—trying not to involve them too much, because they
can kind of try to turn things their own way (Heather).
These results demonstrate that in the context of
clinical rehabilitation, the clinicians were more
oriented towards the perceived needs of the patient
rather than those of their family. This is not to say
that the clinicians ignored the needs of the family.
Indeed, several clinicians discussed at length the
emotional support, information and education that
they provided families during the course of a
patient’s rehabilitation. However, when discussing
the issue of goal planning, it was very apparent that
all goals were about the patient. The ‘client’ in
rehabilitation was, for these clinicians, the patient
alone. This was never more apparent than when
clinicians were asked to describe how they would
address a situation where the preferences of a patient
conflicted with those of their family.
We have had situations where we will sit down the
family, and we will sit down the person, and—you
know, we’re advocates—if we are going to be
advocating for anybody it’s going to be for the client
(Elaine).
Discussion
This study used grounded theory methods to
explore the beliefs and perceptions of health
professionals regarding the involvement of family
members in goal-planning. The results from this
study indicated that, while family members were
often considered valuable contributors to the goal-
planning process, they were also seen as potential
barriers to the negotiation of goals between
clinicians and patients and to the development of
patient–clinician relationships. The clinicians thus
described restricting the involvement of family
members in situations where such involvement
was thought not to be in the best interests of
the patient (as perceived by the clinician).
Furthermore, these findings suggested that
by-and-large the clinicians considered the patient
to be the focus of goal-planning. The involvement
of family members in goal-planning was only
considered important insofar as it contributed to
this focus. Planning rehabilitation to achieve goals
for families rather than for individuals with brain
injury appeared to not be within the scope of usual
practice for the clinicians involved in this study.
This orientation towards patient-centred (as
opposed to family-centred) goals is reflective of
much of the literature on goal-planning in adult
rehabilitation, which has either marginalised the
involvement of family in collaborative goal planning
[21–35], minimised the implications of involving
family members [36–43] or has specifically recom-
mended against setting goals for family members to
achieve alone [10, 16]. This finding also appears to
reflect clinical practice in rehabilitation services in
other countries around the world. For example,
Lefebvre et al. [6] recently conducted a qualitative
investigation of the experiences of patients, families
and clinicians regarding rehabilitation for traumatic
brain injury (TBI) in a Canadian hospital, conclud-
ing that ‘throughout the continuum of care, the
interventions generally focus on the person with
TBI’ (p. 529).
To put this study into a wider context, however,
this patient-centred orientation to goal-planning can
also be seen as a potential consequence of the way
rehabilitation was funded in the services that
employed the clinicians who participated in this
study. Like most health services in Western coun-
tries, funding for adult rehabilitation in New
Zealand centres on single events (such as an episode
 Goal planning for adults with acquired brain injury
of stroke or TBI) for an individual person (the
patient). Within such a funding framework, inter-
ventions to address the needs of patients can be
justified; interventions designed to address the needs
of family members are considered of low priority, if
provided at all. Thus, while education and training
of a family member for their future role as caregiver
of a person with an acquired brain injury may be
considered part of the intervention to achieve a
patient’s goal of returning home, providing profes-
sional counselling for that family member to come to
terms with their own experience of loss, grief and
changes in social roles or relationships is not likely to
be funded or at least prioritised in the same way.
Interventions to address the emotional or psycholo-
Brain Inj Downloaded from informahealthcare.com by Northeastern University on 10/27/14
gical needs of family members who are not caregivers
(such as the children or siblings of those with brain
injury) are even harder to justify.
Of course this emphasis solely on the needs of the
patient is in stark contrast to the growing evidence
that acquired brain injury affects more than just the
person with the disability. Families and carers of
adults with brain injury are known to be at risk of
stress, depression, family dysfunction, marital and
relationship problems, physical health problems and
For personal use only.
generally poorer quality of life [44, 52–56]. Visser-
Meily et al. [8] were referring to these sequelae when
they described stroke as a ‘family disease’ (p. 1557).
An argument could be put forward for considering
TBI in the same way. Past research has also
suggested that the maintenance of strong social
relationships may be one of the most important
factors determining quality of life for a person with
acquired brain injury [57, 58]. Interventions to
strengthen family functioning and family coping
would thus seem advisable and processes for goal-
planning should perhaps be redesigned to better
support this agenda.
While this recommendation would seem ideologi-
cally sound, the evidence regarding the effectiveness
of family-centred interventions to improve outcomes
following brain injury is however still in the early
stages of development. A recent critical appraisal of
the literature on family interventions after acquired
brain injury reported that, while extensive anecdotal
and quasi-experimental evidence existed in support
of family-centred interventions, only four rando-
mised controlled trials (RCTs) have been published
that investigated such interventions for families of
people with acquired brain injury [59]. Of these four
RCTs, all used methods of moderate-to-low quality
and all investigated education or support interven-
tions for primary caregivers only, with mixed results
[59]. Among the authors’ conclusions from this
review were recommendations that future research
should focus on the development of standardised
outcome measures of family stress and family
199
function and on RCTs that investigate interventions
for whole family systems rather than just the primary
caregivers of people with brain injury [59].
Family-centred approaches to goal-planning are
likely to be not without complications however. As
suggested by the findings reported in this paper,
family members do not always agree with clinicians
(or each other) regarding what is best for the
person with the newly acquired brain injury.
Moreover, it is naı̈ve to assume that family members
will always have the best interests of their disabled
relative at heart. For example, another study
documented a case where a family member, who
had been assigned power of attorney for a woman
with severe communication impairment after a
stroke, stated that he did not love the patient (his
mother) who was under his guardianship and did not
particularly care what happened to her during
rehabilitation [60]. Simply stating that clinicians
should involve family member in goal-planning
ignores these sorts of challenges. Further research
and training is required to provide clinicians with the
skills to manage such complications within the
clinical environment.
There are of course a number of considerations to
take into account when interpreting the findings
reported in this study. Due to the qualitative study
design, the findings reported here should not
necessarily be considered generalisable to other
populations. The participants’ specific responses to
questions in the interviews were likely to reflect not
only their own personal and experiential back-
grounds, but also may have been influenced by
their most recent clinical interactions with family
members and patients. Repeat interviews with the
same participants at different times or interviews
with other clinicians from other rehabilitation
services may well have resulted in further perspec-
tives on the topic of family involvement in goal-
planning being elicited. One might also speculate
that the individual participants may have had some
different experiences of working with family mem-
bers due to the clinical responsibilities specific to
their profession. However, the impression of the
researchers was that the similarities in experiences
resulting from fulfilling a ‘keyworker’ role when
working with family members were far greater than
any differences that might have been attributed to
professional backgrounds.
The results from this study are also likely to reflect
the New Zealand rehabilitation context and so
caution of course must be taken when applying
these findings to services in other countries. These
issues notwithstanding, it should be noted that the
findings from this small study were certainly
consistent with other investigations into family
issues during rehabilitation planning conducted in
 200 W. M. M. Levack et al.
other countries, including Canada [6, 20] and the
UK [19]. Furthermore, one study from the US has
demonstrated an association between family func-
tioning and the quality of the working relationship
between clinicians and patients with brain injury,
with higher levels of family discord being predictive
of poorer efforts by patients during rehabilitation
activities [61]. The conclusion from this paper was
that providers of brain injury rehabilitation in the US
should address family perceptions and family func-
tioning if they wish to maximise patient involvement
in rehabilitation programmes.
Conclusion
Brain Inj Downloaded from informahealthcare.com by Northeastern University on 10/27/14
This paper raises the question of how health
professionals perceive the role of family members
in goal-planning for rehabilitation of adults with
acquired brain injury. If rehabilitation providers
intend for their interventions to address the needs
of families of people with acquired brain injury,
rather than just the needs of the patient them-
selves, this may require some reconsideration
about how families are engaged around goal-
For personal use only.
planning, as well as reconsideration of the sorts
of goals that are deemed appropriate for the
clinical environment. However, it is also acknowl-
edged within this paper that such changes to
service delivery may be dependent on the funding
framework underpinning this clinical work. Family-
centred approaches to goal-planning may be
limited if contractual arrangements emphasise
interventions for achieving patient goals only.
Further work is required to establish how best to
involve family members in goal planning and how
to evaluate family outcomes resulting from such an
approach.
Declaration of interest: The authors report no
conflicts of interest. The authors alone are respon-
sible for the content and writing of the paper.
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Appendix: Key to transcription conventions
The transcripts for this study reflected as closely as
possible the actual words and speech patterns of
the interview participants. Interview extracts have
been edited to illustrate points for the purposes
Brain Inj Downloaded from informahealthcare.com by Northeastern University on 10/27/14
For personal use only.
of this paper, but all editing has occurred with the
intent of retaining the original meaning of the
speech. Ellipses (. . .) have been used to indicate
where speech was omitted. Square brackets [ ] were
used to insert editorial notes or words not present
on the audiotape. Rounded brackets ( ) were used
to indicate where non-verbal sounds such as laughter
occurred on tape. Em dashes (—) were used in the
place of hanging phrases resulting in an incomplete
sentence, interruption by another speaker or where
the speaker made a meaningful pause.