R E C O V ER Y A N D R E H A B I L I T A T I O N

Working the way up in neurological rehabilitation: the holistic

approach of nursing care
Mari Carmen Portillo and Sarah Cowley

Aim. To provide understanding of the nurses’ role in neurological holistic rehabilitation and identify strategies for the
enhancement of rehabilitation services.
Background. Although acute and chronic neurological patients and relatives experience emotional and social changes, most
rehabilitation programmes do not deal with non-physical needs or involve nurses, leading to a poor definition and specialisation
of the nursing role.
Design. Action research.
Method. The project took place in two neurological wards of a highly specialised hospital in Spain and lasted 30 months. An
individualised nurse-led social rehabilitation programme was planned, implemented and evaluated. The nursing role and care in
rehabilitation were explored with 37 nurses and 40 neurological patients and 40 relatives (convenience sampling). Semi-
structured interviews and participant observations were developed. Content (QSR NUDIST Vivo v.2.0) and statistical
(SPSS v. 13.0) analyses were run.
Results. The lack of time, knowledge and experience, the poor definition of the nursing role and ineffective communication with
users limited holistic care in the wards. Some enhancing nursing strategies were proposed and explored: promotion of accep-
tance/adaptation of the disease through education, reinforcement of the discharge planning and planning of emotional and
social choices based on the assessment of individual needs and resources at home.
Conclusions. Nursing professionals are in a privileged position to deal with neurological patients’ and carers’ holistic needs.
Several attributes of the advanced nursing role in rehabilitation teams have been proposed to deal with non-physical aspects of
care.
Relevance to clinical practice.
• Rehabilitation needs of neurological patients and carers at hospital have been described.
• Nurses’ perceptions of their work and role in rehabilitation have been presented.
• Clinical strategies to develop the advanced nursing role in holistic neurological rehabilitation have been highlighted.

Key words: advanced nursing practice, carers, neurology, nurses, nursing role, rehabilitation

Accepted for publication: 8 May 2010

literature in neurological care advocates the importance of

Introduction
Neurological diseases such as cerebro-vascular accidents
(CVA), Parkinson’s disease (PD) and multiple sclerosis (MS)
are a priority for health care in the Western World (Lackey &
Gates 2001, Merino & Hachinski 2003). Although the
physical and cognitive changes at short term and of psycho-
social needs at long term, patients and relatives have referred
to the experience of non-physical needs with more or less
intensity at all stages of the disease (McKeown et al. 2003,
Bakas et al. 2004, Mackenzie et al. 2004).

Authors: Mari Carmen Portillo, PhD, MSc, BSc, RGN, Associate
Lecturer, School of Nursing, University of Navarre, Navarre; Spain,
Sarah Cowley, BA, PhD, PGDE, RGN, RHV, HVT, Professor of
Community Practice Development, Florence Nightingale School of
Nursing and Midwifery, King’s College London, London, UK
Correspondence: Mari Carmen Portillo, Associate Lecturer, Escuela
Universitaria de Enfermerı́a. Universidad de Navarra. C/Irunlarrea, s/
n, Edificio Los Castaños, 31008 Pamplona (Navarra), Spain.
Telephone: 0034 948 42 56 00 ext. 6535.
E-mail: mportillo@unav.es

 2010 Blackwell Publishing Ltd, Journal of Clinical Nursing, 20, 1731–1743 1731
doi: 10.1111/j.1365-2702.2010.03379.x
MC Portillo and S Cowley
To achieve holistic outcomes, rehabilitation programmes
need to reinforce aspects such as the promotion of acceptance
and adaptation to the disease and care process (Noble 1998/
99, Long et al. 2002), information (Watson & Quinn 1998,
Wiles et al. 1998, Forbes et al. 2003), social problem solving
(Grant 1999) or the involvement of users in decision making
(Edwards and Ruettiger 2002, Portillo et al. 2002, Ross et al.
2005). Therefore, it is important to determine what charac-
teristics rehabilitation programmes could have to cover these
needs and what professionals are in a good position to
provide long-term holistic rehabilitation.
Background
The type and contents of the rehabilitation programmes
Very few programmes have attempted to promote social/
emotional rehabilitation through psychosocial interventions
(Glass et al. 2000, Knapp et al. 2000, Ojeda del Pozo et al.
2000, Pacchetti et al. 2000, Grant et al. 2006). In these
programmes, some issues can be underlined: (1) the expected
outcomes were the increase of leisure activities, social skills
and functioning, effective social problem solving, community
independence, emotional well-being and communication
skills; (2) the authors said that the interventions of the
programmes were individually tailored, even if no concrete
forms of social assessment were used to individualise care and
promote effective social problem solving (Lui et al. 2005,
Grant et al. 2006); (3) the programmes were successful at
improving motivation, anxiety and communication, although
there was no clear improvement of attitudes and long-term
social life; and (4) the interventions of the programmes
focused on the active involvement of patients and in some
cases, carers and the definition of choices. The involvement of
patients and relatives in setting care goals supports the need
to promote the planning of individually tailored programmes
through the assessment of needs which is a strategy to
develop patients’ self-control, positivism and skills in dealing
with delicate and private issues like social and sexual life
(Koch & Kralik 2001, Calne 2003, Palmer et al. 2004, Kralik
et al. 2006). This is a neglected area as many neurological
rehabilitation programmes are protocol based.
The professional contribution
Individualised rehabilitation programmes would include long
sessions with patients and carers, involving several specialists
and outcomes would not be always positive, then, this might
not be cost effective. This could be solved by developing the
nurses’ role in non-physical care because nurses spend more
1732  2010 Blackwell Publishing Ltd, Journal of Clinical Nursing, 20, 1731–1743
time with the patient and carer, establish close relationships
and can determine holistic needs without planning specific
sessions. Nurses, however, do not seem to be actively involved
in the rehabilitation programmes. There is limited published
knowledge about professionals’ perceptions of clients’ needs
and holistic care and there are very few rehabilitation
programmes led by nurses (Rawl et al. 1998, Forster et al.
1999, Boter 2004, Nir et al. 2004, Burton & Gibbon 2006).
This is related to the lack of definition of the nursing role in
neurological rehabilitation and the secondary role of nurses
in rehabilitation programmes. Several authors have explored
the nursing role in neurological rehabilitation (Nolan &
Nolan 1998a,b, Thorn 2000, Long et al. 2002, Burton 2003,
Kvigne et al. 2005) and have underlined that nurses promote
coordination, multidisciplinary care and personal recovery.
Nevertheless, the nursing role needs to contemplate psycho-
social coping strategies to achieve long-term recovery, further
work on sexuality and the interpersonal relationship between
nurses–patients–carers and more multidisciplinary work
through consultation.
The promotion of more defined roles in rehabilitation
directly relates to advanced practice nursing, quality and
safety of care and cost-effectiveness (Forbes et al. 2003).
According to Hamric et al. (2009), the core competences of
advanced practice nursing are expert coaching and guidance,
consultation, research skills, clinical and professional leader-
ship, collaboration, ethical decision-making skills and direct
clinical practice. Some of these competences can be identified
in the literature regarding the nursing role in neurological
rehabilitation, and others need further development as it will
be shown in this study.
Objectives
The objectives of this paper are:
1 To describe the clinical nurses’ role and practice in neu-
rological rehabilitation.
2 To determine neurological patients’ and carers’ needs in
rehabilitation at hospital at short and long term.
3 To define strategies that could be planned to develop
holistic nursing rehabilitation and advanced practice
nursing at neurological wards.
Methods
Design
Data from a larger action research (AR) project are presented
in this paper. Three cycles of stages of Lewin (1946) including
stages of planning, executing and evaluation were completed.
Recovery and rehabilitation Nursing care in holistic rehabilitation

Additionally, the experimental and professionalising typolo-
gies of Hart and Bond (1995) were applied (Portillo 2009,
Portillo et al. 2009). Ethical approval was obtained from the
Ethics Committee of the hospital, and consent forms were
signed by all participants for all the instruments. Two wards
of a highly specialised hospital in Spain were accessed for the
study. The groups of participants (Table 1) were all nurses
working in the wards and neurological patients and relatives
who were admitted in the wards and met the inclusion
criteria established in the project through a convenience
sampling method (Bowling 2002).
Data collection
To fully understand holistic care and, plan strategies for
developing the nurses’ role and enhance the validity of data,
multiple triangulation of data-sources, instruments (between/
within methods), unit of analysis and investigators (Denzin

Table 1 Inclusion/Exclusion criteria for patients and relatives and nurses

Inclusion criteria Description Explanation/Exceptions

Patients and carers

Diagnosis for admission Patients should have a stroke for first time Patients could have had a Transient Ischemic Attack
(TIA) before this stroke, or a previous stroke at
least 4–6 months before this admission because
symptoms of that TIA or stroke could have
recovered
PD and MS patients could be admitted PD and MS patients could have been diagnosed
because of other reason rather than the during the hospitalisation they were accessed
disease
Communication Patients with aphasia/dysarthria should Speech could be recovered after treatment if we
disorders be included but their participation needed them to participate in later stages of the
would consist of completing the ADLs study
Scales and personal data forms at
hospital
Caring situation Relatives should be the main carers of When patients did not have relatives, their main
those patients included in the study carers at home were approached
Place of residence Patients and carers should live in If not possible, patients whose home was at not
Pamplona (Navarra) where the data more than 4–6 -hour distance (return trip) in
collection took place means of transport such as coach, train or car,
were also included
Home care Relatives should take care of patients at If any patient was transferred to another health
home Institution, relatives had to be the main carers for
the patient in such health institutions
Language Patients and relatives should not have When Spanish was not possible, English
problems in speaking and understanding
Spanish
Length of hospitalisation Patients should stay in hospital at least Time was needed to properly access them and give
four days them time to decide on their participation and
undertake an interview
Nurses
Nurses’ work contract Nurses should have a stable work This criterion was established to facilitate the
situation (contracts longer than continuity of the research process and ensure the
15 months) in the wards permanence of the change in the wards (for later
Nurses doing speciality in the wards that stages of the study). This was possible if nurses
are expected to be contracted in a near remained in the wards after the study finished
future
Nurses’ shifts Nurses should not do night shifts Changes were planned to be mainly implemented in
exclusively day shifts and nurses were expected to collaborate
in such changes (later stages of the study) what
would be impossible during night shifts
Reasons for exclusion for Incapacity, unwillingness, impossibility
all groups of participants for access

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MC Portillo and S Cowley
1970, Waterman 1998) and a complete review of the
literature (Portillo Vega 2006) took place.
Nurses’, patients’ and relatives’ interviews
Semi-structured interviews (Bowling 2002) were undertaken
with nurses during shifts and patients’ hospitalisation.
Interviews lasted from 30–50 minutes and were recorded and
fully transcribed. All interviews with all participants were
carried out in a one-to-one basis. Interviews were conducted
separately and lasted from 32–77 minutes. The interviews
schedules are outlined in Table 2.
Socio-demographic forms and the 10-Barthel Index of
Activities of Daily Living (ADLs) (modified version)
Participants also completed a socio-demographic form,
which included aspects such as age, gender, marital status,
work experience, level of education, working and household
status and presence of hazards at home. The Barthel Index
of ADLs (Wade & Langton Hewer 1987) was also com-
pleted with patients to determine their level of functional
independence in personal care and mobility at hospital.
Validity and internal consistency coefficients of this Index
have been already reported (Wade & Langton Hewer 1987,
Shah et al. 1989).
Table 2 Nurses’ and patients’ and relatives’ interviews main contents
Interview applied to nurses
Issue 1
Nursing role in working with stroke/Parkinson/Multiple Sclerosis
patients and relatives
Issue 2
Changes caused by Stroke/Parkinson/Multiple Sclerosis in patients
and relatives
Issue 3
Changes occurred in social life
Issue 4
Stroke/Parkinson/Multiple Sclerosis rehabilitation
Issue 5
Attitudes towards social life after Stroke/in Parkinson/Multiple
Sclerosis
Issue 6
Alternatives in social life after stroke/in Parkinson/Multiple Sclerosis
Issue 7
Nursing role in promoting social life after stroke/in Parkinson/
Multiple Sclerosis
Issue 8
Nursing role in informing patients and relatives after stroke/about
Parkinson/Multiple Sclerosis
Issue 9
Nursing role in promoting lay participation in care
1734  2010 Blackwell Publishing Ltd, Journal of Clinical Nursing, 20, 1731–1743
Participant observations
Participant observations (Gold 1958) were carried out and
roles of Full Participant and Participant as Observer were
combined (Polit-O’Hara & Hungler 1997, Turnock & Gib-
son 2001) to avoid conflicts with the participative nature of
AR. The observation instrument contained structured, semi-
structured and unstructured items (Table 3). A total of
66 hours and 10 minutes were recorded in early shifts and
68 hours and 30 minutes in late shifts (70 interactions were
observed).
Analysis of data
Data from interviews and open questions from observations
were content analysed (Miles & Huberman 1994) using QSR
NVivo for Windows XP. To ensure objectivity, two research-
ers analysed data from interviews simultaneously and
achieved high concordance (Sandelowski 1986). When there
was no agreement, a third researcher was consulted. Only
minor disagreements of the statement of some categories
occurred, not affecting the whole sense of the built categories.
For the analysis, transcripts from interviews and open
answers of observations were coded (i.e. Nurse 1, N1,
Patient/Relative 1 Parkinson disease group 1, P/R1pdg1) and
Interview applied patients and relatives
Issue 1
The impact of the disease and the admission experience/and the
diagnosis
Issue 2
The disease process and information issues
Issue 3
Family involvement in care
Issue 4
Rehabilitation issues
Issue 5
The disease and changes caused by it
Issue 6
Changes in social life
Issue 7
Attitudes towards having social life
Issue 8
Possible alternatives for social life (only if social life affected)
Issue 9
Opinions and perceptions about professionals
Issue 10
Nurses encouraging patients and relatives to increase social life
Recovery and rehabilitation
Table 3 Participant observations
Details
Items Structured
Semi-structured
Unstructured
Event Every time that participant nurses interacted with
stroke, PD and MS patients and/or their relatives
during the observational interval
Interval Early shift:
(1) 9Æ00–10Æ30
(2) 11Æ30–13Æ30
Late shift: 16Æ00–19Æ00
organised. Although after the analysis of all transcripts
several major themes emerged, for the focus of this paper the
most relevant themes have been covered. A statistical package
SPSS 13.0 for Windows (SPSS Inc., Chicago, IL, USA) was
used. Descriptive (quantitative variables) and frequencies
(qualitative variables) analyses were run with some items of
the observations, the socio-demographic forms and the
Barthel Index of ADLs (Bowling 2002). For the comparison
of data obtained from the samples of patients and relatives
and observations non-parametric analyses were undertaken.
Significance was established at 0Æ05.
Results
Participant nurses
A total of 37 all eligible nurses, female and with an average
working experience with neurological patients of 8Æ14 years
participated in the study.
Patients and carers
Forty patients and 40 relatives were accessed (see their
sociodemographic characteristics in Table 4). Generally,
carers were the patients’ partners. Patients’ median level of
disability was moderate (scores of 0 indicated total depen-
dence and of 20 total autonomy).
Data from interviews and observations
Twenty-three of 37 interviewed nurses were observed at
least once when interacting with patients and relatives. Four
patients had speech problems at this stage and could not be
interviewed but were recruited with their carers anyway as
they could recover and participate in later stages of the
study. For this paper, findings from the analysis of
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Nursing care in holistic rehabilitation
Explanation
Distribution of the wards
Nurse-patient ratio
Shift, length of interactions with patients and relatives
Type of information, type of care, response of patients
and relatives in interactions
Range of time was not defined until a deeper knowledge
of the routines of the wards was gained
interviews and observations have been integrated in three
main topics:
1 The nursing role in health education and information.
2 The need for acceptance and adaptation.
3 Holistic assessment and life choices.
These topics were considered the most representative of the
nursing role in holistic rehabilitation from data and will be
developed to describe the nature of the nurses’ role in
neurological rehabilitation and identify some strategies and
limitations for the enhancement of rehabilitation services.
The nursing role in education and information
In observations only 35 of 70 interactions involved infor-
mation or education. Among them, 14 of 35 informative
interactions were initiated by doctors and the same number
by nurses. Most educative interactions (27/35) focused on the
disease, treatment and physical aspects of care and only two
of 35 interactions focused on lay participation in care, one on
rehabilitation, one on social issues and three on discharge
planning.
Despite what was observed, patients and relatives did not
feel educated by nurses and did not consider that informa-
tion-education was a nursing duty. There seemed to be a lack
of patients’ and relatives’ initiative to demand information as
it is illustrated in the following:
R18msg1: … I don’t like going into information in any depth because
I wouldn’t understand, I am not curious… I have enough with basic
information… an explanation of the disease… I trust doctors, I don’t
ask more…
In general, clients said that they only needed information and
advice to deal with formal and informal help in care giving,
guidelines about day centres, care management and courses
for carers. Twelve patients and nine relatives search for
information in Internet, mass media and magazines. Further-
more, they said that these not always reliable sources of
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MC Portillo and S Cowley

Table 4 Demographic data and score in ADLs Index for patients and standing of the information provided and did not know about
carers societies of patients with PD and MS.
Patients Relatives Finally, most nurses (35/37) were aware of their important
Variables (n = 40) (n = 40) p-value role providing or clarifying information or in health educa-
tion but they recognised that this role was underdeveloped.
Age 64Æ5 (56, 70) 55Æ5 (41, 67Æ7) 0Æ01*
Gender Nurses believed that patients at early stages of the disease
Male 25 (62Æ5%) 11 (27Æ5%) 0Æ014** could be orientated towards societies (10/37) or other
Female 15 (37Æ5%) 29 (72Æ5%) professionals or health disciplines in the postdischarge
Barthel score patients 13Æ5 (6Æ2, 17) – period. The problem was that their experience and resources
Patients’ disease
doing this were limited and nurses did not know how to put
Stroke 14 (35%)
PD 17 (42Æ5%)
patients and relatives in contact with other professionals for
MS 9 (22Æ5%) social resources (22/37):
Marital status
N13: I don’t have any experience in holistic rehabilitation, I think
Single 6 (15%) 4 (10%) 0Æ748*
Married/living with 29 (72Æ5%) 32 (80%) that when somebody works in a hospital it is important to have
partner contacts with other services to know what the patient’s status is after
Widower/widow 3 (7Æ5%) 2 (5%) discharge.
Separated/divorced 1 (2Æ5%) 1 (2Æ5%)
Nun/priest 1 (2Æ5%) 1 (2Æ5%) In 31 of 35 observed educative interactions during hospi-
Educational background talisation, no written resources were used. The only written
No reading and writing 1 (2Æ5%) 0 (0%) 0Æ064* information patients and relatives received was the medical
Reading and writing 6 (15%) 3 (7Æ5%)
report when they were at home, and it was not explained to
Primary school 14 (35%) 15 (37Æ5%)
Secondary school 9 (22Æ5%) 6 (15%)
them personally. Considering this evidence, most nurses
First degree 7 (17Æ5%) 13 (32Æ5%) (36/37) suggested that handling leaflets and brochures could
Postgraduate studies 2 (5%) 3 (7Æ5%) be helpful and supportive because that would ease the
Musical career 1 (2Æ5%) 0 (0%) process of information, new questions would arise and
Working status patients and relatives would better retain written than
Full time (30h+/week) 10 (25%) 14 (35%) 0Æ007*
verbal information.
Part time (8–30 0 (0%) 4 (10%)
hours/week)
Housewife 12 (30%) 14 (35%) The need for acceptance and adaptation
Student 0 (0%) 1 (2Æ5%) Nurses believed that ‘acceptance’ and ‘adaptation’ to the
Permanent 1 (2Æ5%) 1 (2Æ5%) disease were essential for patients and relatives and were part
unemployment
of holistic rehabilitation. Thirteen nurses thought of making
(disability)
Retired 16 (40%) 6 (15%)
patients aware of their own limitations, assessing the level of
Pre-retired 1 (2Æ5%) 0 (0%) acceptance of the disease and being realistic about the situ-
Care situation ation were key strategies to implement. Most nurses (26/37)
No carer 9 (22Æ5%) 10 (25%) 0Æ102* were concerned about the need to intensify these activities in
Partner and/or 24 (60%) 23 (57Æ5%) denying patients that needed more time to accept and adapt
son/daughter as
to global changes and faced more difficulties during the
carers
Paid carer and/or 6 (15%) 6 (15%) transition process:
nursing home
N18: First of all, they have to assume it, it has to be very, very hard
Parents as carers 1 (2Æ5%) 1 (2Æ5%)
and then, I don’t know if it would be good to organise meetings with
Age and Barthel Index values: Median and Interquartile Range other people in a similar status to make them see they are not alone
(IQR): Percentile 25/75 (P25, P75).
out there.
Other variables: Frequency (percentage).
Tests: *Wilcoxon signed rank test, **Mc-Nemar. Some patients (13/40) felt useless and a burden for relatives
and this could limit the process of adaptation. Patients felt
they bothered the carer with their needs and wanted to be
information provided them with the information-education self-sufficient. During hospitalisation, patients and relatives
they longed. Nevertheless, 11 patients and 15 carers did not were asked about their expectations of life after discharge
even know what their disease consisted of, lacked under- and there were positive and negative answers. Six patients

1736  2010 Blackwell Publishing Ltd, Journal of Clinical Nursing, 20, 1731–1743
Recovery and rehabilitation
and eight carers believed that life could improve if leisure
activities were distributed over time so as not to exhaust the
patient and only once they overcome the acute exacerbation
of the disease. From interviews, it could be deduced that 13
patients and 15 carers did not have realistic views of the
changes and expectations for life after discharge, affecting
their level of adaptation and acceptance. This was perceived
in the following case of a severely disabled stroke patient who
was at a reluctance stage of the disease and did not accept its
consequences:
P1stg1: I think that my social life will improve after discharge. I will
have to take work easy but I will do the same quietly. I might only
need to avoid travelling to contact clients…
Furthermore, other relatives suffered the patients’ reluctance
to socialise because of embarrassment (10/40). In other cases,
acceptance had become conformity (six patients and four
relatives). This and the fact that these patients and relatives
mainly focused their answers on life changes instead of
solutions indicated that adaptation was not taking place.
Encouragement was a key strategy for nurses to promote
acceptance. In 27 of 70 observed interactions (38Æ6%),
nurses provided emotional support. Accordingly, some
patients and carers felt emotionally supported or expected
emotional support from nurses (27/80). This support was
also provided by the family. In 85Æ7% of observations,
patients were accompanied by at least one relative, and in
30% of the observations there was more than one carer
with the patient. However, the emotional support as an
isolated activity did not seem to work for holistic rehabil-
itation. This was also perceived during observations
because 57 of 70 (81Æ4%) interactions involved physical
care, 12 (17Æ1%) cognitive care and only two (2Æ9%) social
care. Regarding this data, most nurses (35/37) said that
dealing with psychosocial needs was a community staff’s
responsibility. Their lack of knowledge and experience
about this issue mainly caused the denial of the responsi-
bility. Nurses felt poorly involved in rehabilitation,
depended on other professionals and saw themselves as
coordinators of rehabilitation services. Only seven nurses
had some experience in this type of rehabilitation, espe-
cially gained from their own family environment and not in
the ward.
The involvement of patients and carers in the decision
making was also important in the process of transition. Some
relatives (18/40) did feel involved in care because they were
consulted about the decisions made, were asked about
changes in the patient’s condition, informed about the
different procedures and instructed in very specific aspects
of care such as insulin administration. However, in most
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Nursing care in holistic rehabilitation
cases this was an aspect that needed reinforcement to get to
know the patient and the carer.
Holistic assessment and life choices
Nurses did not seem to realise how important life changes
were for patients and relatives and what exactly they con-
sisted of. This was related to the lack of follow-up of the
disease process and the discontinuity between clinical and
primary nursing. Hospital health professionals seemed to
work in isolation, as illustrated:
P6stg1: … there are no problems during the stay in hospital, even
more, people are charming, there is this environment…, positive, you
don’t have any problem. Problems arise when one is out… out of the
comfort… … maybe one is overprotected in the hospital and lost at
home.
For most nurses (34/37), the assessment of holistic needs
and the provision of life choices were considered the
backbone of holistic rehabilitation. The need to assess the
family situation to find a balance between ‘overprotective’
and ‘barely involved’ families was stated. Nurses suggested
that friends and relatives could encourage patients to be
active, relate to others from the time of hospitalisation, meet
other people and entertain and go out with them even if the
patient refused to do so. The assessment of patients’ and
relatives’ needs and possibilities at home was another point
to be approached, when planning a rehabilitation pro-
gramme based on individual needs. Nurses clearly stated
that they needed to know what social life, emotional needs,
hobbies or work patients and relatives had before the
disease and could develop afterwards, to diagnose, inter-
vene, delegate and evaluate any problem and develop their
role. The problem posed was that nurses only used verbal
communication with clients to obtain this type of informa-
tion and that nurses felt afraid of the patients’ and relatives’
response towards the assessment and socialisation because
nurses could be intruding into a private ‘ambit’ and lacked
skills to obtain this type of information.
Patients and relatives felt that their life had changed as a
result of the disease and most changes related to social and
family life and work. Some patients forecast changes such as
the culinary adaptation, the change of unhealthy habits or
social changes (travelling, group activities, sports…). Rela-
tives felt that the indirect repercussions of the disease; the
alcohol restrictions, the role changes or their fear of being
rejected (19/40) led to changes in friendships and a decrease
in hobbies and intellectual activities. Most times all this was
influenced by the patients’ reluctance (15/40) to socialise. Life
predisease had to be assessed to evaluate the magnitude of the
change:
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MC Portillo and S Cowley

R13pdg1: I used to walk in the morning, especially because my
cholesterol is high, but then as I could not leave him (the patient)
alone, I stopped going for a walk. I started to go shopping in the
closest groceries. At present, he can’t move and then I have to hurry
up and finish everything in 5 or 10 minutes.
To promote holistic rehabilitation emotional and social
choices had to be set. Some participants (39/80) felt they
could not find solutions for life changes. To develop their role
consequently, most nurses (34/37) agreed that social and
emotional advice could be provided to face life and potential
problems, such as adapting activities to the new situation, or
looking for other ways to relate to others.
Most patients and relatives (50/80) wanted to have their
individual needs assessed and be better prepared for the
discharge; therefore, the problem/solving strategy seemed
adequate for a rehabilitation programme. Patients and
relatives were also asked about choices for social life, their
expectations of professional advice and about the choices
they had already considered:
R14stg1: I don’t know what social life is good for my husband (the
patient). I would like somebody to tell me if going to certain places or
eating certain things is harmful for him. I don’t take any risk, I stay at
home.
Introducing this type of assessments in the wards could be
limited by the perception of overburden. This was supported
by patients’ and relatives’ testimonies as they considered that
nurses could not do much better because they were ‘running
up and down’. Observation data showed that during the 70
observed interactions the mean number of nurses per shift
was 3Æ94, the mean ratio nurse/patient was 1/9Æ93 and the
mean length of the observed interactions of nurses with
patients or relatives in minutes was 6Æ79. Therefore, even
though nurses had an important load of patients to care, they
spent enough time with patients and relatives to undertake an
adequate assessment.
Discussion
To meet objective 3, strategies which could be planned to
develop holistic nursing rehabilitation and advanced practice
nursing at neurological wards have been defined and discussed
(Fig. 1). It has been stated that although the nursing discipline
is expected to establish its basis on holistic care, nursing
sometimes remained task orientated and neglected some non-
physical aspects of care. The literature repeatedly supported
this (Gage & Storey 2004, Booth et al. 2005) and the fact that
patients and relatives had emotional and social needs at
different stages (Makenzie et al. 1998, McKeown et al. 2003,
Bakas et al. 2004).
Education and information were relevant to rehabilitation
owing to the feelings of security that being informed/involved
could mean for patients and carers. This was related to the
fact that patients’ and in fewer cases relatives’ information
needs about psychosocial care were not always satisfied. This
could be related to the nurses’ belief that when patients
experienced a chronic process such as PD and MS, informa-
tion should only focus on treatment, home care and medicine
advances, which were what they thought patients and
relatives seemed to be interested in. There seemed to be

Education
Awareness of holistic needs of Importance of nursing More active role
patients and carers contribution in detecting and Nursing written information
dealing with holistic needs Acceptance and adaptation

Consultation &
Delegation
Levels of care
Attitudes Other services
Networking
Role attributes

Development of instruments for Holistic care

holistic assessment Individual holistic assessments
Holistic assessments Family assessments
Experience in assessments Communication skills
Knowledge Empathy
& clinical
Social advice, networks, experience Research skills/use
emotional support, of evidence
resources, life choices. Decision-making
Delegation, contacts Education
Innovation and development
of service

Collaboration/leadership
Within/between disciplines
Lay carers
Patient

Figure 1 Analysis of holistic rehabilitation and the nursing role. Strategies for enhancement.

1738  2010 Blackwell Publishing Ltd, Journal of Clinical Nursing, 20, 1731–1743
Recovery and rehabilitation
differences between patients’ and relatives’ and professionals’
perceptions of information needs and this requires further
exploration. In the literature, several studies have included
written information in the rehabilitation packs and proved its
effectiveness with also chronic neurological patients and
carers (Grant 1999, Mant et al. 2000, Forster et al. 2001)
and this could be considered in future rehabilitation pro-
grammes and integrated in daily practice. Nursing profes-
sionals need to be seen as consultors or coaches and this
could prevent patients and relatives from searching for
information in sources of doubtful reliability (Hamric et al.
2009). Furthermore, handling written information before
discharge could solve the lack of understanding of informa-
tion because misconceptions and doubts about the disease, its
repercussions and prognosis could be approached. This could
be a solution to promote coaching and consultation, which
were attributes of the nursing role that emerged in this study.
However, the coaching attribute of advanced practice nursing
was limited because nurses did not use evidence to support
their role and did not consult other professionals or levels of
care.
Other attributes that needed reinforcement were ‘consul-
tation’ and ‘collaboration’. According to the results, nurses
in this study were aware of the need to improve their work
with carers in the promotion of rehabilitation. This is a key
point to consider in a holistic rehabilitation programme as
normally patients’ social life relies on carers (Portillo Vega
2006). Kellett (1999) also underlined the benefits of family
involvement and of the assessment of home environment for
patients’ recovery. Likewise, Nolan and Nolan (1997)
highlighted the importance of the role of a supportive
person in the adaptation to MS and the benefits of a
supportive family environment on the improvement of QoL
of MS suffers.
Identifying and approaching supportive siblings and pro-
fessionals is also a key nursing strategy. Rehabilitation
services should also search for cooperation between hospital
and other community-based centres, i.e. societies. Interview
data supported the importance of societies in the provision of
social support and information especially at early stages of
the disease. Watson and Quinn (1998) and Wiles et al. (1998)
also encouraged professionals to give patients with stroke and
carers information about societies of patients to ensure they
retained information especially after the initial shock.
Although in our study many patients at an advanced stage
of their disease and their carers were not even aware of
societies, these centres seem to be valuable to promote carers’
self-care and more intense involvement in the decision
making (Burks 1999) and as a source of emotional support
(Edwards & Ruettiger 2002).
 2010 Blackwell Publishing Ltd, Journal of Clinical Nursing, 20, 1731–1743
Nursing care in holistic rehabilitation
An attempt has been made to find connections between
rehabilitation and family support and information. Essen-
tially, it could be said that the more the patient and the family
know about the disease and how to manage its holistic
repercussions, the more the disease would be accepted and
they could co-exist with the disease. The three groups of
participants highlighted the need for ‘acceptance’ and ‘adap-
tation’ (Rawl et al. 1998, Boter 2004) as these constituted the
first step towards reintegration in these neurological diseases
(Nolan & Nolan 1997, O’Connor 2000), Advanced practice
nursing in rehabilitation could be also developed taking this
into account as ‘being a coach’ for patients and carers starts
from understanding the disease process from their perspective
(Palmer et al. 2004, Grant et al. 2006, Kralik et al. 2006).
The difficulties found in the process of ‘acceptance’ and
‘adaptation’ in acute and chronic disorders and the planning
of coping strategies could be overcome by undertaking
careful ‘social, emotional and family assessment’ with
patients and carers, which could constitute the mainstays of
nurses’ practice. Several studies have recommended to
include assessments in rehabilitation programmes to base
education on assessment results (Koch & Kralik 2001, Grant
et al. 2006). Nevertheless, this has been carried out on few
occasions (Trend et al. 2002, Wade et al. 2003). The use of
evidence could also support nurses in their decision making
and in the introduction of new holistic models of care in the
wards (Bryant-Lukosius & DiCenso 2004).
Reflecting on data from interviews and observations, social
and family life needed to be assessed to make the process of
care individual and evidence based. This could also provide
nurses with rich information to develop coaching and
collaboration skills. Consequently, patients and relatives
could also benefit from these care plans being actively
involved, developing positive attitudes and recognising own
needs, strengths and limitations. The importance of the
assessment of psychosocial issues, domestic housework and
social and family life in capturing the disease impact and
developing a care plan has also been stated by Fawcett
Vickers and O’Neill (1998) and Gottberg et al. (2002). The
inclusion of psychosocial assessments in daily care plans
could help to overcome myths about social life being a taboo
for patients and relatives and to undertake non-physical care
naturally, because this was a limitation nurses felt in this
study. Additionally, nurses could be provided with forms and
computer resources to collect and register this type of
information making the social assessment a formal activity
in the shift. Nevertheless, this assessment strategy could help
nurses develop their role as leaders in collaboration by
gaining self-confidence and communication skills with
patients and carers. As mentioned before, integrating social
1739
MC Portillo and S Cowley
assessments in daily care would also have important limita-
tions regarding workload and time schedule which should
also be considered, explored and evaluated by organisations.
The provision of life choices also emerged from findings as
an innovative intervention of future rehabilitation pro-
grammes. There are very few studies where individual
assessment of needs has been followed by the provision/
planning of coping strategies (Ojeda del Pozo et al. 2000,
Grant et al. 2006). Through the assessment, clinical nurses
felt they could understand life changes and set life choices and
patients’ and relatives’ unrealistic expectations could be
unveiled and reoriented. Patients’ and carers’ adaptation
could happen as they would be actively involved in the
process and would learn how to cope with daily problems.
The provision of choices could give identity to nurses in
holistic rehabilitation as they could be considered leaders by
other professionals, coaches by patients and carers and would
learn to collaborate, consult and use evidence. In this paper, it
has been attempted to analyse the situation regarding the
nursing role in holistic rehabilitation as seen by professionals,
patients and carers and set guidelines for advanced practice,
considering context-related circumstances.
Reflections on the methods
The triangulation of sources and instruments increased the
validity of data and ensured that data were sound, rich and
saturated. Additionally, the high correlation of our results
with the literature increases the representativeness of the
nurses’, patients’ and relatives’ samples. This representa-
tiveness could have been weakened by the nature of the
sample of patients and relatives which included patients at
very different stages of the disease process. What could
have been a limited sample in the beginning resulted in a
very rich source of information for the purposes of this
project, because short and long-term needs could be
defined.
Conclusion
Clinical nurses’ perceptions and suggestions about their role
in rehabilitation, neurological patients’ and relatives’ needs
and perceptions of the nursing role in holistic care and data
observed directly in the setting have been triangulated.
Most statements on education and information and
discharge planning were presented in conjunction with the
1740  2010 Blackwell Publishing Ltd, Journal of Clinical Nursing, 20, 1731–1743
literature. Results from this study support the literature with
regard to the lack of development of the nursing role in
holistic and neurological rehabilitation.
The possibility of assessing patients’ and relatives’ holistic
needs, providing life choices and giving information about
other health professionals before discharge has important
implications for practice as many daily problems could be
detected earlier and referred to a more specialised discipline.
In consequence, this could enhance clients’ feelings of safety
and adaptation and increase social life in the community,
which is the real aim of rehabilitation. These activities would
also be good strategies to develop the nurses’ role in
rehabilitation and some attributes of advanced practice
nursing such as coaching, collaboration, evidence-based
practice and consultation could be reinforced.
Relevance to clinical practice
This work is relevant to clinical practice because rehabilita-
tion needs of neurological patients and carers at hospital have
been described. Furthermore, some conceptual and practical
strategies to develop the nursing role in holistic neurological
rehabilitation have been set at hospital levels.
Acknowledgements
We are grateful to the people who contributed to the
development of this project: nurses and other health profes-
sionals working in the wards of the hospital and other
community centres and patients’ societies for their valuable
and active collaboration, and patients and relatives selflessly
participating in the project.
Research funding was obtained from the Department of
Health of the Government of Navarre, Spain. Financial
support was also provided by the School of Nursing of the
University of Navarre.
Contributions
Study design: MCP, SC; data collection and analysis: MCP,
SC and manuscript preparation: MCP, SC.
Conflict of interest
None.
Recovery and rehabilitation
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