Rehabilitative care in a specialist palliative day care centre: A study of patients' perspectives

12 Pages·2004·3.67 MB·English

Clinical
Rehabilitative care in a specialist
palliative day care centre:
A study of patients' perspectives
CA Belchamber, MH Gousy
This qualitative study set out to explore cancer patients' perceptions of a rehabilitative care approach, which
they experienced in an independent specialist palliative day care centre. A phenomenological approach was
chosen and through semistructured inten/iews, patients' perceptions of their symptoms, beliefs and
attitudes towards their rehabilitative care were explored. The relevance and benefits of the rehabilitative
care approach were then identified using quality of life markers established during data analysis.
The main factors uncovered and shown to contribute to the rehabilitation process were: environmental
factors; participant interaction; normalization; health-care professional interaction; nutrition; mobilization;
and education. However, more research is needed to understand how some of the treatment modalities
discussed can help reduce fatigue, pain, dyspnoea and nausea in this group of people.
Key words: rehabilitation, cancer, palliative care, day centre, symptom management, physiotherapy
Belchamber CA. Gousy MH (2004) Rehabilitative care in a specialist palliative day care centre: A study of patients'
perspectives. Int J Ther Rehabil 11(9): 425-34
I
t has been proposed that a rehabilitative care research-based methods and symptom cotitrol avail-
approach may restore Hinction in people with able. The objective is to promote a partnership
cancer as well as ameliorate perceptions of between tlie liealth-care professional and the person
hopelessness and despair (Sciallaetal, 2000). with eancer through a ctxirdinated approach to treat-
Frank et al (1998) also state that at any stage of ment planning and goal setting, allowing the person s
life of the person with cancer, using a rehabilita- condition to be monitored effectively through
tive care approach could have benefits for symp- detailed documentation. This is the cornerstone to the
tom relief, psychological health and quality of life. rehabilitative care approach philosophy (Higgs and
Focusing on rehabilitation in palliative care would Titchen, 1995).
therefore enable health-care professionals to incor- Central to this philosophy is the redevelopment
porate social, emotional and vocational issues, of the individual's optimal function in his or her
providing a holistic approach to the person with current environment. This is achieved through mul-
cancer and his or her family. (idisciplinary assessments, where each person with
People with caneer encounter multiple symptoms cancer is treated uniquely in response to his or her
that are coinpiex and atTect both the physical and medical history, abilities, disabilities, environment
the psychosocial aspects of their lives. The four and expectations, as well as his or her physical.
main symptoms are pain, dyspnoea, nausea and intellectual, psychological and social make-up.
fatigue, which are often distressing and difficult to The person with cancer is given control and
manage (Curt, 2001). It is therefore important that choice over his or her treatment input with guidance
rehabilitation in the context of palliative care is from the health-care professionals, which include
C\ Belchamber is
assessed to explore its effectiveness in managing the specialist palliative day care charge nurse and Senior I Oncology
these symptoms. In order to do this, it is essential physiotherapist. Treatments include psyehosocial Physiotherapist. Poolc
that health-care professionals listen to people with support, lymphoedema management and transeuta- Hospital NHS Trust.
cancer and learn from their experiences. neous electrical nerve stimulation (TENS) for pain pQok-. DorsL't BH!5 2JU,
UK ;ind MH C»usy is
control and nausea management.
Principal Lecturer.
REHABILITATIVE CARE APPROACH University of Greenwich,
AIM OF RESEARCH School of Health and
The rehabilitative care approach explored in this Social Care, London. UK
study aims to foster independence, self-respect and The research aimed to explore patients' pereeptions
Correspondence lo:
control, while providing relief from pain, dyspnoea, of the rehabilitative eare approach at a specialist pal-
C.i Belchiiiiiher
nausea and fatigue using the most appropriate liative dav care centre and consider how the rehabili- chclchiimhciia o2.co.uk
International Journal of Therapy and Rehabilitation, September 2004, Vol 11. No 9 425
Clinical
tative care approach may be improved. Research cer, including breathing retraining, exercises, coun-
questions included the following: selling, relaxation, teaching of coping and adaptation
• What are people with cancers' perceptions of strategies. Results showed a median improvement in
their symptoms? breathlessness at worst of 35% (/'=0,02); an
• How do people with cancer perceive the rehabili- improvement in distress caused by brcathlessness of
tation they received? 53% (P^0.02); and an improvement in functional
• What attitudes or beliefs do people with cancer capacity of 17% (P=0.03). Hately et al (2001) vali-
have about the rehabilitation they have received? dated these results with significant improvements
made in breathlessness at worst (P<0.001), an
LITERATURE REVIEW improvement in distress caused by breathlessness
(F<0.001) and an improvement in ftmctional capac-
Research indicates that there is a higher prevalence ity (P<0.O(i[). In addition, there was significant
of anxiety and depression in people with cancer improvement in the participant's quality of life
compared to the normal population (Higginson, (P=0.004) and 100% satisfaction with information,
1997), with Stone et al (2000) observing a strong explanation and time given.
correlation between fatigue and psychological dis- Diversional therapy was shown to be valuable to
tress. In addition, there is evidence tliat fatigue lev- people with cancer in a study by Shaw and Wilkinson
els are positively linked with increased levels of (1996), as it provided a sense of piupose - a factor
pain {Blesch et al. 199]), dyspnoea (Brown et al, thought to be essential for the overall wellbeing ;md
1986), nausea (Knobf, 1986) and emotional upset self-identity of the person (Frampton, 1986).
(Nerenzetal, 1982). Participants also experienced 'transcendence', where
Interestingly. Gadsby et al (1997) found that they could remove themselves mentally from their ill-
fatigue was improved eight-fold in people with can- ness. However, no well-designed studies on the effi-
cer after using TENS, thus increasing quality of life. cacy of aromatherapy were found, with only one
Symptoms were assessed using the European pertinent research paper identified in the manage-
Organisation for the Research and Treatment of ment of nausea. This study used an N-of-l design
Cancer quality of life questionnaire (EORTC QLQ- (Brown et al, 1992), where three treatment conditions
C30), which did not provide information on the were compared: acupressure wristband (at the com-
effect of the treatment modalities on pain. monly accepted P6 acupoint). placebo wristband and
no band. Each treatment lasted approximately
Mock et al (1997) investigated the effect of exer-
4-8 hours. Results indicated no significant difference
cise on people with cancer and observed a signifi-
between the treatment conditions. However,
cant reduction in fatigue levels in those who
McMillan and Dundee (1991) recommend using
exercised (n=22) compared with the control group
TENS on the Neiguan antiemetic acupuncture point.
who received usual care («^24). Syrjala et al
(1995) compared four therapies: usual treatment; Evidence from this literature search indicates that
usual treatment with therapist support; usual treat- psychological distress is linked with fatigue, which
ment and relaxation/imagery training; and usual emerges as the key symptom in people with cancer
treatment and a package of cognitive behaviour and has strong influences on levels of pain, nausea
coping skills plus relaxation/imagery. Participants and dyspnoea. There are indications that group ther-
reported less pain in the groups receiving the relax- apy, the non-pharmacological approach to breath-
ation/imagery and the package of skills than those lessness, exercise, relaxation and coping strategies
receiving the other interventions {P<0.0\). Fleming all play a vital role in the management of these
(1985) also investigated relaxation therapy in a hos- symptoms in isolation. This evidence was used to
pice setting and indicated that 38% of the 58 people structure the rehabilitative care approach to explore
with advanced cancer pain had a reduction in their its effectiveness in treating the person with cancer
pain after relaxation therapy. holistically. TENS, diversional therapy and aro-
Spiegel et al (1981) showed that people with can- matherapy were also included.
cer who received group therapy had a statistically
significant reduction (F<0.01) in pain sensation, METHOD
pain suffering and fatigue levels. Passik et al (1995)
showed that women with upper limb tymphoedema Field et al (2001) recognize that research in pallia-
who used "avoidance coping mechanisms' experi- tive care should incorporate the physical, psycho-
enced greater psychological morbidity, physical dys- logical and emotional components of the patient's
Ilinction. concerns relating to body image and pain experience. Qualitative research was therefore cho-
than those women using active coping techniques. sen as it has the ability to describe the form and
Comer et al (1996) looked at the effect of the non- nature of a particular phenomenon. As a result, it
pharmacological approach for dyspnoea in lung can- infonns health-care professionals about illness and
426 International Journal of Therapy and Rehabilitation, September 2004, Vol 11, No 9
treatineiit in the context of everyday life, as well as ing one of the four main symptoms of cancer - pain,
investigates a previously unexplored topic or one dyspnoea, nausea or fatigue - in order to explore the
that is inadequately recognized or not clearly effectiveness of the rehabilitative care approach on
defined (Britten et al. 1994). these symptoms. It was therefore necessary to elimi-
Out of the five main qualitative methodologies, nate people with cancer from the study who had
phenomenology was chosen to explore the rehabili- other medical conditions, which would have had an
tative care approach as it aims to uncover the essen- effect on these symptoms.
tial structure of a phenomenon hy exploring the Haemoglobin levels below lOg/dl, where a blood
'outward appearance' and 'inward consciousness' transftision and flirther palliative chemotherapy or
rooted in the person's memory, image and meaning
(Crombic. 1998). Phenomenology literally means TABLE 1.
Participant characteristics
'the study of phenomena' and phenomenological
research begins with the acknowledgement that Demographics Age range 45-82 years
there is a gap in our understanding (Wilson. 2000). Median age 66.1 years
Phenomenological-orientated psychological research Comorbidities Patients referred fitting the inclusion/exclusion criteria n = 22
Patients referred who died before end of study n = 7
was used as it aims to answer two related questions:
Patients referred who deteriorated before end of study n = 2
• What is the phenomenon that is experienced and Patients referred who declined to take part n = S
lived? Sex Males n = 3
• How does it show itself? Females n = S
Generaf Live at home n = 8
These questions are answered by allowing partici-
characteristics Live in bungalow n = 2
pants to absorb and reflect upon their experiences in Live in fiat n=l
a variety of ways that are unique to them (Vale and Live in house n = A
King, 1978). This essential meaning should provide Live in residential home n=0
the researcher with the means to increase health- Widowed n = 5
Married (two were second marriages) n = 3
care professionals* awareness and insight into the
Live alone n = S
rehabilitative care approach at the specialist pallia-
Live with wife and three daughters n=1
tive day care centre. Live with husband and son from previous marriage n=1
Live with husband n=1
DATA COLLECTION Regular contact with family and friends n=6
Found support from local church n = 2
Occasional contact from frtends/family by phone n^i
For this qualitative study the researcher adopted the Working n-0
data collection cycle shown in Figure J. Retired n = 6
Semi structured interviews were used so that key Hoping to return to work n=l
Housewife n=1
issues could be explored in depth. The addition of an
Current Independently mobile (no aids) n = 6
agenda meant that there was consistency to the raw
mobility Independently mobile with a stick n=1
data, providing a base for the initial stages of data status Independently mobile with a rollator (delta frame) n=1
analysis. Formulating questions around key issues Haemogiobin Haemoglobin range 10.4-13.9g/dl
(identified in the literature review) as well as focus- Diagnosis Primary. Breast cancer n = 3
ing upon the aims and objectives of the research Unknown primary n=]
Cancer of the oesophagus n=]
established the agenda. Open questions were sought
Renal cell carcinoma n=]
and care was taken that they were not leading in any
Cancer of the colon n = 1
way. In addition to this, prompts were used to stan- Prostate cancer n=1
dardize the clarification process. Secondary: Bone n=2
The layout of the agenda was organized with sen- Liver n = 3
Lung n = 4
sitivity, leaving the more probing and personal
Lymph nodes
issues towards the end of the interview, so allowing
E_ None
time for rapport to be established and rich data to be
Figure 1. The data coltection cycle.
extracted. A logical sequence of key issues enabled
the participant to be at ease during the interview.
The initial question was purposefully chosen to
Gaming access an
relate to the known reason for the research.
making rapport
Population characteristics
Participant characteristics are presented in Table I.
Inclusional and exclusional criteria were incorpo-
rated (Table 2) to select a homogenous sample.
Potential participants were required to be experienc-
Internationai Journal of Therapy and Rehabilitation, September 2004, Vol 11, No 9 427
Clinical
radiotherapy may be required, would have had an From the collective fomiulated meanings, clus-
effect on the person's experience of fatigue. The ters of themes were arranged signifying the emerg-
participant also needed to be capable of understand- ing common themes. Making a reference back to
ing the study and what it involved as well as cope the original descriptions and determining whether
with an interview that lasted 1 hour. they remained true to the unique account validated
the clusters of themes (Table 4). From this data
Ethical issues analysis an exhaustive description of the phenome-
Ethical approval was sought from the local ethics non was compiled by amalgamating the results.
committee and access was obtained from the
researcher's employer. One-to-one interviews were Description of the rehabilitative care approach
carried out to explain the research to the potential During the rehabilitative care approach, the partici-
participant. During this interview, the person with pant's perception of abandonment, anxiety and loss
cancer was asked whether he or she might volunteer of control is altered through social contact, commu-
to take part in the research. If the person volun- nication and group activities, as well as ttirougli the
teered, verbal consent was provided, protecting the health-care professionals acknowledgement of the
rights of the research participant. participant's individuality and through attentive lis-
Following verbal consent, the researcher asked tening and appropriate response. The participant's
the participant for informed consent before the wcllbeing is enhanced through a comforting.
semi structured interview. On receipt of study infor- secure, stimulating and remedial environment,
mation, each participant was asked to sign a consent encouraging motivation and compliance.
form. Process consent (McLeod, 1996) was then Participants' perceptions of their physiological
used to gain consent at each stage. This process and psychological symptoms were transformed
continued to protect the participant's vulnerability through the therapeutic interventions, which were
and the interviewer from any misunderstandings by described as 'subtle treatments that can be accessed
the participant. Pseudonyms were also applied so as required'. The treatments helped to increase
that participants could not be identified and an iden- strength and reduce pain, fatigue and dyspnoea
tification code was issued on individual interview through opportunities and challenges - ultimately
agenda forms. Confidentiality of the research envi- giving control back to the individual.
ronment was also proteetcd.
RESULTS
Data analysis
Scmistructured interviews were recorded and tran- Nausea was not mentioned by the participants and
scribed verbatim. Preconceived ideas about the phe- so cannot be commented upon. However, symp-
nomenon were isolated enabling the researcher to toms of pain, dyspnoea and fatigue were all per-
comprehend the participant's views in depth. ceived as three-dimensional, consisting of physical,
Using a methodology developed by Colaizzi emotional and spiritual elements [Table 3.1). The
(1978). a series of steps were followed to analyse the combinations of psychosocial symptoms described
raw data. This commenced with 'hoHzontalization', had a direct correlation with the participants' per-
reducing the original transcriptions into significant ceptions of their physical symptoms and disabilities.
statements, which were further condensed into for- The latter was demonstrated by the participants'
mulated meanings. Words, statements and phrases description of their quality of life before the rehabil-
were grouped according to their similarities and itative care approach, as seen in Table 5.2. where
characteristics to produce key themes, forming the there was an overriding feeling of loss and isolation.
basis of the findings. These are categorized under This had a negative effect on their wellbeing, hope.
tlic headings 'symptoms", 'quality of life', 'expecta- self-esteem, role, social support, emotional suppon.
tions', "rehabilitation' and 'beliefs' {7aWei- 3.1-3.5). energy, strength, mobility and control.
TABLE 2.
Inclu5ional and exclusional criteria
Inclusional criteria Exciusional criteria
• Must be capable of articulating his/her conscious experiences (Creswell, 1998) People requiring further palliative chemotherapy or radiotherapy
• Must be experiencing one or more of: pain, dyspnoea, fatigue or nausea People with underlying pathologies such as cardiovascular disease
• Must have a cancer diagnosis and have completed either palliative chemo- People with a history of cardiovascular accidents
therapy, palliative radiotherapy or both at least 4 weeks before the research
• Haemoglobin must not be below lOg/dl People with a history of myocardiai infarctions
• GP must agree to carry out a blood test before participant is accepted onto study People with a haemoglobin level below lOg/dl
Must be fit enough to participate in the rehabilitative care approach over a People who aren't fit enough to participate in the rehabilitative
-month period care approach over a 2-month period
428 International Journal of Therapy and Rehabilitation, September 2004, Vol 11, No 9
Pain feelings of wellbeing. This was achieved by provid-
Pain was described as terrifying, frightening and dev- ing the participants with time to explore their emo-
astating. This emotional pain also had an effect on the tional needs, building trust between the professional
participant's immediate family, social circle of friends and participant, which in turn produced an atmos-
and neighlxiurs. often causing higli levels of anxiety phere of comfort and security. This care and atten-
and feelings of isolation. Participants' experience of tion was seen to have a positive psychological effect
relaxation indicated that it had a positive effect on on the individual and was described as 'remedial.'
their perception of pain {Table 3.4). confirming
Syrjala et al's (1995) research and adding corrobora- Positive ness
tion to Fleming's (1985) research, that relaxation Participants perceived that their ability to do things
does help in pain relief in people with cancer. Group increased through the "positiveness' (Table 4) that
woric was also perceived to reduce both physical and had been generated during the rehabilitative care
emotional pain (Table 3.4. Table 4). veriiying Spiegel approach. Lifestyle changes, support from the dif-
et al's (1981) research on group therapy. ferent health-care professionals, talking, the
removal of time constraints and the caring atmos-
Dyspnoea phere were all contributory factors described by the
Participants perceived that the non-phannacological participants as enabling them to accomplish more.
approach in the management of dyspnoea enabled
ihcm to control their breathlessness, which in turn TABLE 3.1.
improved their functional capacity and their overall Formulated meanings of significant statements - symptoms
quality of life (Table 3.4. Table 4). This supports and Wbat is the most difficult part of your illness to cope with?
confirms both Comer et al's (1996) and Hately et Pain Constant pain was replaced by cramp
als(200!) research findings. Cramp was described as 'seizing' and 'locking up', which was often
painful and required force to release
Cramp was perceived as a nuisance in disturbing sleep patterns
Fatigue
Pins and needies and muscle spasms were associated with the cramp
Before the rehabilitative care approach, participants Oedema and splitting dry skin caused aciie, discomfort and pain
found that fatigue had a direct impact on their qual- Dyspnoea Breathlessness was the hardest symptom to cope with - it was
ity of life, making activities of daily living virtually tiring and described as the 'engine of your body', which was
distressing as it equates life
impossible and requiring will, effort and courage to
Dry irritating cough was perceived as annoying
carry them out (Table 3.1). Again, psychosocial fac-
Fatigue Described as tiredness that drained the body totally of energy
tors contributed to the fatigue as well as loss of Individuals found the unexpectedness of fatigue difficult to cope with
appetite, decreased weight, decreased strength from Individuals were rendered incapable of carrying out activities of daily
malnourishmcnt and muscle atrophy. living owing to both physiological and psychological disabilities
Physically, bodies felt 'heavy' and legs felt like 'lead'
This parallels with Gregory (2001), who states
Psychologically, individuals lost the motivation to carry out simple
that collectively, fatigue in people with caneer has
activities of daily living, requiring 'courage' to do anything
cognitive, psychological and physiological causes. Weakness and fatigue led to loss of appetite, weight and stamina
Rhodes et al (1988) remark that this has a negative Emotions Individuals felt isolated or ostracized from the community
impact on the person's ability to carry out activities Stress and worry about the cancer, tests, hospital appointments,
family and job situation produced high levels of anxiety
of daily living, which confirms the findings in Table
The inability and loss of control led to frustration and sadness
3.1. Further, it supports Stone et al's (2(X)0) findings
A diagnosis of cancer was perceived as 'devastating', 'frightening'
that that there is a correlation between fatigue and
and 'terrifying', with the thought of dying
psychological distress and that there is a correlation Having cancer was difficult to accept and a sense of imminent death
between fatigue and levels of pain, dyspnoea and caused a low or depressed mood
emotional upset. However, there was no correlation
tbund between fatigue and nausea in this study. TABLE 3.2.
Mock et al (1997) demonstrate that exercise Formulated meanings of significant statements - quality of life
reduces fatigue, which has been confirmed by this p How would you descritje your quality of life before receiving the care and now?
study, although the group setting was also an intlu- Quality of Quality of life was poor because of low mood and negative attitude
ential factor. Spiegel et al (1981) found that there life before Negative thoughts led to low self-esteem and sense of abandonment
was a significant reduetion in fatigue in the inter- Quality of life was reduced owing to physiological/psychological disabilities
Quality of Mobility increased with an improvement in health and reduction in pain
vention group who had attended weekly support
life after Reduced negative emotions increased ability to do more, alleviating fatigue
meetings and so confirm the important role of
Improved rapidly along with general condition, thus positively affecting
group work in helping to reduce fatigue levels. the individual's whole life
Attending the specialist centre added to the individual's quality of life,
Rehabilitation enabling him to achieve more
Being in control of the situation provided individual with a sense of normality
The rehabilitative eare approach (Table 3.5) was per-
j Improved through positive attitudes of 'happiness', 'fitness' and lack of worry
ceived by participants as enhancing psychological
International Journal of Therapy and Rehabilitation, September 2004, Vol 11, No 9 429
Clinical
Environmental approach Seligman (1975) suggests that self-esteem is built
Overall, psuiicipants perceived that the rehabilitative through the individuals perception that the quality
care approach offered an environment in which they of the experience was actually controlled by him or
learned to develop personally within their illness. The her and is therefore a protective mechanism against
factors that limited their effective flinctioning and depression. Thus, il couid be said that the rehabilita-
behaviour were corrected, modified or adapted (Table tive care approach provides the psychological sup-
3.4). facilitating and maximizing their independence. port necessary to reduce or minimize the physical
The environment was also shown to dictate the indi- and mental isolation found in people with cancer.
vidual's behaviour, which had an important impact
on the lives of the people with cancer (Table 3.3). An DISCUSSION
environmental approach is therefore an essential ele-
ment of the rehabilitative care approach. As a result of this study a number of issues have
emerged, which may have important implications for
Normality and control the care of people with cancer.
Participants believed that the rehabilitative care
approach improved their quality of life by giving Normalization process
them some sense and purpose {Table 3.5) and that it A normalization process initiated the individual's
provided a reason to live instead of just 'existing'. rehabilitation and is defined as an acceptance of the
They further stated that it was a source of diversion, diagnosis and disability and the particular needs of
enabling them to forget about their symptoms and that individual with the disability. This process was
providing an incentive to go out, which ultimately promoted through environmental factors and diver-
boosted their morale. This answers Burch et al's sional therapy. Once this normalization process had
(1999) statement that: taken place, participants felt able to achieve more in
'It would be useful to know whether their lives. Shaw and Wilkinson {1996) state:
activities involved in day centre 'It is often said that people only feel
attendance, such as getting ready, walking themselves to be truly alive when
to transport and meeting other people, stretching and testing themselves.'
also lead to functional improvement.' Diversional therapy offered this to the participants
hi addition, the rehabilitative care approach pro- as they frequently described their craft activities as
vided the participants with a sense of normality and challenging. This normalization process should
control {Table 3.2). This feeling of control is per- therefore be seen as the foundation of all rehabilita-
haps the turning point in the rehabilitation process tion programmes and the key factor in judging the
from isolation and depression to a sense of compe- services quality (O'Brien, 1980).
tence and self-esteem, which has been arrived at
through the participant's own actions. Functional ability
Functional ability was shown to improve with the
TABLE 3.3. rehabilitative care approach through a complex
Formulated meanings of significant statements - expectations interlinking of therapies and environmental factors.
What were your expectations of the specialist palliative day care centre? In addition, there was some evidence that it helped
Expect!ons before Lack of any expectation, with fear and uncertainty to reduce fatigue. However, the experience of
attending the Sense of abandonment, along with association of death, fatigue was often described as 'unexpected" and had
palliative care centre: produced feelings of apprehension and reluctance to attend
an adverse affect on the person with cancer's ftinc-
^^ Courage required to face visions of 'silent' and 'moaning' people
tional ability. This parallels with Field et al's (2001)
No expectation of improving their 'bodily health'
Mpections after Psychoiogicai feeling of weilbeing while attending findings that tlinctional ability in people with can-
attending the Provided an incentive as weil as comfort, through the ability cer suftering from fatigue was not a reliable way of
palliative care centre to express feelings during inquiry assessing fatigue. A more holistic assessment tool is
Lack of time constraints provided a sense of security
therefore required.
Contact with other people in similar situations was inspiring
Psychological feeling of weilbeing remained after individual In general, there has been a preoccupation with
returned home, enabling an improved sleep pattern the 'physicality' of rehabilitation and frequently the
Meeting up with friends, chatting to the therapists and
criterion for success has been related to whether the
accomplishing something was important to the individual
person with cancer is able to walk. Mulley (1994)
Sense of unity among the individuals was significant,
learning from each others' experiences believes this attitude to measuring rehabilitation is
Looking forward to the opportunity of attending changing, but the process of moving away from the
Nice atmosphere and the pleasant company was found to be physical to the holistic approach is an extremely
'remedial' and therefore an enjoyment for the individual
slow process. This may well be owing to the inher-
The care and attention offered by the health professional had
ent diftlculties in defining "quality of life' (Brown
a positive psychological effect on the individual
et aK 1996). Providing a holistic assessment tool
430 International Journal of Therapy and Rehabilitation, September 2004, Vol 11, No 9
that can encompass the complexities of measuring quality of life, but also are based on the health-care
the impact of rehabilitation in a palliative care set- professional's perspective rather than the patient's
ting would therefore be challenging. perspective (Renwick and Friefield, 1996). The con-
cept of rehabilitation for people with eancer is
Ownership therefore of great value and this researeh has helped
The transcriptions indicated that the health-care to provide that understanding. Fitzpatriek (1996)
professionals at the specialist palliative day care states that quality of life should represent the pri-
centre were sensitive to people's feelings of isola- mary outcome of rehabilitation, which has been
tion. During the rehabilitative care approach, each eonfirmed by this researeh (Table 3.2).
participant felt valued accepted and respected as a
person as their disability and needs were acknowl-
TABLE 3.4.
edged. This promoted trust, enabling the profession- Formulated meanings of significant statements - rehabilitation
als to search and discover the participant's unique
How would you describe the care you have received at the palliative day care centre?
and individual story. Mason (2000) says this is an
General Rehabilitation was beneficial as there was always a health professional
essential skill required by health-care professionals
available to address the problem
as it encourages a sense of ownership within the Caring atmosphere with the ability to talk and laugh was stimulating
rehabilitation programme. The individuals felt 'very special' with the attention they received
Rehabilitation was 'good sensible practical advice' sought through
Watson (1996) states that promoting a sense of
inquiry and discussion
ownership can be achieved through clinical reason-
Rehabilitation was accumulative, addressing the 'whole' person with
ing. If successful, compliance can be attained along support from different health-care professionals
with self-responsibility and Hhere may be psycho- Psychologically, the health-care professionals were understanding,
logical advantages in making people responsible for providing support through a change of attitude such as 'positive thinking'
their treatment rather than victims of their pain' Through lifestyle changes, individuals were able to accomplish more
The importance of being together as a group was an overriding factor
(McKinney. 1989). However. Ryan (1994) believes
in the rehabilitation of the person
that a sense of ownership may in fact be more
Rphabilitdtion was concentrated into one day without any time ronstraint
important than information in achieving compliance. Has the care offered helped you to manage this area of your illness more successfully?
whereas Cameron (1996) states that compliance can Diversionai Found it interesting and were inspired by other people's efforts
be enhanced through social support and that a lack therapy It provided opportunities of being creative, challenging them to achieve
and learn something new
of social support can contribute to non-compliance.
Accomplishing the challenge provided individuals with a sense of worth
Therefore, for this concept of ovv'nership to be suc-
and ability to succeed in other areas of their rehabilitation
cessful, it is essential that health-care professionals
Group Found this a social event which they enjoyed, as it was in a group
and people with cancer are seen as equal and active exercises The group setting acted as an incentive for all participating
partners so that careful documentation can be Exercises were found to be beneficial, increasing mobility and strength
achieved, enabling appropriate referral to other Exercises helped to replace sense of physical loss from the individual's past
Doing the exercises white sitting meant that whatever the individual's
health-care professionals while improving collabora-
physical disability, he/she was able to join in
tion and multidisciplinary networking. This may also
Breathtessness individual was more capable of controlling and dealing with breathlessness
enhance the care pathway for people with cancer by clinic Individual felt well enough informed to carry out the controlled breathing
ensuring collaboration across service boundaries. Aromatherapy Aromatherapy was relaxing, both physically and psychologically
Aromatherapy was soothing and helped with pain and cramp
An aromatherapy ointment was brilliant in resolving dry, split skin
Outcome measures
Lymph- Compression stockings reduced oedema and pain and increased mobility
With recent government proposals there has been a
oedema The support of the compression stockings was thought to have resofved
renewed emphasis on outcome measures within the clinic the paraesthesia and reduced the frequency of cramps
health-care services, which has become a focal point Having all the health-care professionals within the same building was
to assessing the effectiveness of service provision. beneficial in speeding up the control of the symptom
Education A need for information was met through the provision of a booklet
Rehabilitation is already perceived within the med-
Being able to refer to the booklet for information was an enormous help
ical profession as a predetermined process.
Having information written down about the prescribed medication
However, Swift (1996) argues that there are very few enabled the individual to recognize and understand what the tablets
universal indicators of outcome in rehabilitation. were for, which was thought to be beneficial
Evans et al (1995) carried out a meta-analysis of Spiritual Having a strong faith was helpful in coping with the cancer
rehabilitation outcome measures and concluded that Support was given through prayer as well as attending the church,
providing spiritual support along with the physiological and
they are usually restricted to three main areas; sur-
psychological support
vival, functional ability and discharge destination.
How would you describe the communication between the healthore professionals at
Renwick and Friefield (1996) comment that there the centre and the other health<are professionals you are involved with?
is a need for theoretical underpinning in rehabilita- Health-care Communication was excellent; more time to talk/listen without distractions
tion and challenge the simple empirical model professionals Collaboration linked the centre with the local hospital and doctor
Health professionals were professional; networking was accurate and timely
available. Further, many of the existing measures
All health<are professionals were helpful, referring individuals appropriately
not only use functional ability as an indicator for
International Journal of Therapy and Rehabilitation, September 2004, Vol 11, No 9 431
Clinical
CONCLUSION attributed to the disability itself. This is in contrast
to the clinical perspective of rehabilitation, where
Not all symptoms experienced by people with can- there is an assumption that the symptoms of people
cer reside totally in the pathology or are direetly with eancer exist solely in their pathology, disability
and limitations rather than in a sense of devalued
TABLE 3.5. status (Galvin, 1983), The rehabilitative care
Formulated meanings of significant statements - beliefs approach was sensitive to this and has, therefore,
managed the symptoms experienced by people with
Descnbe what^u feel has benefited you by attending the specialist day centre
eancer effectively. However., it requires resources,
Rehabilitative care provided is a form of 'treatment'
willingness and enthusiasm to deliver this extended
Physiotherapy is a treatment, but also 'social' in the context of exercise classes
care (Hopkins and Tookman, 2000).
Rehabilitative care has more of a subtle nature than that received in hospital
Rehabilitative care changed people's thought patterns, enabling them to become
more aware of what they were able to achieve Further research
The rehabilitative care approach helps distract the individual from his/her symptoms, • Further investigation is required into diversional
both physically and psychologically therapy, which was seen to play an important
The ability to choose to participate in some of the rehabilitative care provided a role in the management of dyspnoea, fatigue and
sense of freedom, allowing the individual to achieve more in his or her own time the normalization process of the person with
Rehabilitative care provided a reason to live, instead of just existing cancer. Diversiona! therapy was also seen as an
Rehabilitative care is a 'diversion', making you forget about symptoms, removing incentive for the individual's functional ability.
worries while providing you with an incentive to go out, which boosts morale
• Aromatherapy showed promise in reducing
The distraction is carried over to everyday life as individuals become preoccupied with
physical, emotional and spiritual pain as well as
the choice of care available to them - of great benefit to isolated individuals
improving eramp, and demonstrated its healing
Rehabilitative care improved people's quality of life, giving it some sense and purpose
effect on skin damaged through chemotherapy.
Individuals didn't realise there was the opportunity to have rehabilitative care, which
Again, this warrants fiarther investigation.
improved their welibeing
• The management of lymphoedema also reduces
Seeing other people coping with cancer changed their perception of their own
the frequency of cramps and paraesthesia, which
symptoms and how they were coping
requires further investigation.
Describe what imptvvements you would make to th& care you have received
• Cotitraindications and effects of TENS on reduc-
A desire to come more frequently and participate in more of the care provided
ing physical pain in people with cancer, as well as
A lack of time to do ail that they wished to achieve on the day they attended
fatigue and nausea, needs to be in\'estigated. The
Individuals should be called guests, not patients - they were being treated as a per-
son and accepted as a unique individual researcher was unable to obtain any data on this
subject in the sample group studied.
TABLE 4.
Clusters of common themes
1. Participants' a. Negative feelings and attitudes arose from isolation, producing a sense of abandonment
negativeness b. The sense of abandonment increased anxiety and stress levels, ultimately leading to loss of control
2. Participants' a. Positive feelings/attitudes were nurtured through contact with peers and health professionals, producing a sense of unity
positiveness b. The sense of unity was increased through group activities, communication, enquiry and the ability to express emotions,
producing a feeling of wholeness
3. Participants' a. The health-care professionals acknowledge participants' individuality through attentive listening and responding
individuality to them as valued individuals
b. The health-care professionals treated them as valued professionals
4. Environment's a. Participants perceived the atmosphere as being comforting, secure, stimulating and remedial, providing a sense of wellbeing
atmosphere b. The sense of wellbeing increased motivation and compliance and a produced positive change in how the participant
perceived his/her symptoms
5. Physiological a. Pain was associated with cramp, lymphoedema, parathesia and disturbed sleeping patterns
symptoms b. Aromatherapy and compression stockings helped reduce these symptoms with a resultant improvement in mobility
c. Dyspnoea was difficult to cope with and distressing
d. The breathlessness clinic enabled them to control and deal with this symptom more effectively, while the diversional
therapy helped to take their mind off the dyspnoea
e. Fatigue was totally draining, causing weakness and heaviness with loss of appetite, weight, stamina, motivation and
control, leading to difficulties in carrying out activities of daily living
f. Group exercises were an incentive and helped to increase strength, while diversional therapy provided an opportunity to
accomplish something, which increased self-esteem and the ability to succeed in other areas of their rehabilitation
6. Therapeutic a. Therapeutic interventions had a direct effect on participants' perception of their physiological and psychological wellbeing
interventions b. Participants perceived an overall positive effect on their body health, with an increase in strength and reduction in pain,
fatigue and dyspnoea
7, Rehabilitative a. Participants perceived this as 'subtle treatments that could be accessed when required', with an overall accumulative
care supportive effect
b. Treatments opened up opportunities, challenges and the ability to accomplish tasks; therefore provided a sense of control
432 International lournal of Therapy and Rehabilitation, September 2004, Vol 11, No 9
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Internationai Journai of Therapy and Rehabiiitation, September 2004, Voi 11, No 9 433
The recerrtiy published National they are client-centred, symptom- health-care professionals, talking into the patient's perspective and
Institute for Clinical Excellence focused and aim for improved and patient control and 'owner- have demonstrated how vital
(NICE) (2004) guidance on cancer quality of life. ship' of their care. rehabilitation in palliative care is
services, Improving Supportive They ably recognize the com* The range of rehabilitative in improving an individual's qual-
and Palliative Care.for Adults with plex interplay of symptoms and media discussed and the profes- ity of life as clTampioned in the
Cancer, sets out clear recommen- how these symptoms affect a sionals involved are by no means Fulfilling Lives document. They
dations. It states that people person on a physical, emotional exhaustive. The Fulfilling Lives have challenged us as profession-
affected by cancer should have and spiritual level. They particu- document (National Council for als to value the person with can-
access to a wide spectrum of ser- larly, and justifiably, acknowledge Hospice and Specialist Palliative cer, listen to his or her own
vices which wiH address physical, fatigue as a debilitating impact of Care Services, 2000) and the 'unique aad individual story' and
emotional, spiritual and social cancer and its treatments. As NICE (2004) guidance include tailor rehabilitation accordingly
needs and improve their quality illustrated here, the mind-set of descriptions of the recommended
of life, and that they should be rehabilitation being purely a components of a multiprofes- Helen Barrett
involved in the decision ma'king 'physical' discipline is being sionat team. Senior Occupational Therapist
about their care, replaced by recognition that As an occupational therapist, I The Royal Marsden NHS Trust
Belchamber and Gousy's article there are many varied non-phar- was disappointed to see the omis- Sutton ,
investigates the importance of malogical interventions with sion of an occupational therapist Surrey SM2 5PT
UK
rehabilitation in a palliative day which to meet an individual's in the team described in this arti-
case setting and raises many multifaceted needs. cle. Occupational therapists are
National Council for Hospice and Specialist
issues pertinent'to the NICE guid- The article charts the shift from able to contribute a breadth of
Palliative Care Services (2000) Fulfilling
ance. By exploring the patients' a patient's sense of loss and isola- interventions including manage- Lives: Rehabilitation in Palliative
perspectives, they are indeed tion through adjustment to ment of anxiety, breathlessness Care. National Council for Hospice and
Specialist Palliative Cate Services, London
endeavouring to be client-cen- achieving improved quality of life and lifestyle issues, as well as
[Rational Institute for Clinical Excellence
tred. Further, the authors illus- with rehabilitation as the catalyst. assessment of activities of daily liv- (2004) Guidance on Cancer Services:
trate the many similarities Other integral factors having a ing and of the home environment. Improving Supportive and Palliative
between the ethos of rehabilita- positive effect seem to be the However, the authors have Care for Adults with Cancer.
National institute for Clinical Excellence,
tion and palliative care - that caring environment, support from provided an important insight London
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434 International Journal of Therapy and Rehabilitation, September 2004, Voi 11, No 9