Introduction
Setting
Background
Lymphoedema is a chronic inflammatory lymphostatic disease that is caused by
the body's inability to drain lymph fluid from the tissues, which results in the
swelling of a body part, most commonly the extremities. Lymphoedema occurs when
the lymphatic load exceeds the transport capacity of the lymphatic system,
resulting in an abnormal accumulation of protein-rich fluid in the interstitium
(Norton School of Lymphatic Therapy 2004; Zuther 2005; Lawenda, Mondry &
Johnstone 2009). Primary lymphoedema is the result of developmental dysplasia of
the lymph vessels or lymph nodes (Foldi & Foldi 2006) and may be present at
birth, or develop later with no obvious cause (Norton School of Lymphatic
Therapy 2008). Secondary lymphoedema is more common than primary lymphoedema and
is caused by known factors such as surgery, radiation, infection, malignant
tumours, immobility and chronic venous insufficiency (Zuther 2005).
It is unknown how many people in Africa live with lymphoedema. The
unavailability of statistics is merely part of a worldwide phenomenon as,
according to Zuther (2005), no specific studies have been conducted on the
incidence of lymphoedema. In 1984, the World Health Organisation (Norton School
of Lymphatic Therapy 2008) estimated that 113 million people suffered from
lymphoedema, with 90 million caused by parasites, 20 million caused by breast
cancer and with 2-3 million people with primary lymphoedema. Foldi and Foldi
(2006) are, however, of the opinion that 140-250 million people worldwide suffer
from lymphoedema and that breast cancer treatment is one of the most common
causes of secondary lymphoedema.
The lack of epidemiological data are also related to the fact that
lymphoedema is not a reportable condition (Foldi & Foldi 2006). Secondary
lymphoedema is, furthermore, commonly viewed as being less important than the
eradication and detection of recurrent breast cancer (Petreck & Heelan
1998). In 1998, Petreck and Heelan (1998) undertook a review of the medical
literature and found that the incidence of breast cancer related lymphoedema
ranged between 6% and 30%; however, Clark, Sitzia and Harlow (2005) state that
the incidence of breast cancer related lymphoedema ranges between 6% and 83%.
Lymphoedema is incurable because of permanent damage to, or absence of, the
various lymphatic components (Lawenda et al. 2009). People do not die of
lymphoedema, but their quality of life is severely impaired. Surgical procedures
such as debulking operations, amputations and other unsuccessful or outdated
surgical procedures can have disastrous effects on the patient (Foldi &
Foldi 2006). Complete Decongestive Therapy is the gold standard treatment for
lymphoedema (Lawenda et al. 2009) with the main goal of returning the
lymphoedema to a stage of latency by using the remaining lymph vessels and other
lymphatic pathways. Additional goals of Complete Decongestive Therapy, which
have shown an average lymphoedema reduction of the upper extremity of 59.1%
(Lawenda et al. 2009), are the reduction and removal of fibrotic tissue and the
prevention and elimination of infections (Zuther 2005).
Complete Decongestive Therapy is a specialised conservative treatment
comprising two phases: an induction phase and a lifelong maintenance phase
(Norton School of Lymphatic Therapy 2008; Zuther 2005; Foldi & Foldi 2006;
Lawenda et al. 2009). During the induction phase, the patient is seen and
treated on a daily basis. Induction treatment consists of manual lymph drainage
of 30-60 minutes at least once a day, 5 days per week and the application of
compression bandages. Short stretch bandages are preferred because of their high
working and low resting pressure qualities. Before the bandages are applied, the
affected limb is moisturised with a moisturiser specifically formulated for a
sensitive skin and patients are instructed not to remove the bandages at home.
During the induction phase the patient, or a family member, is taught
self-bandaging as the patient's lymphoedematous limb needs to be bandaged during
weekends and nights for the maintenance phase. The patient receives instructions
on decongestive exercises and has to perform these for 10-15 minutes twice a day
whilst wearing the bandages (Zuther 2005). Skin and nail care forms part of
patient education as well as the signs, symptoms and management of skin
infection. The duration of the induction phase varies with the severity of the
lymphoedema, or by the patient's response to therapy (Lawenda et al. 2009), and
ends when a plateau, indicated by the results of the circumferential or
volumetric measurements on the affected extremity, is reached. During the
maintenance phase, the patient assumes responsibility for the management of the
lymphoedema by maintaining and improving the results of the previous phase. The
maintenance phase comprises skin and nail care, self-manual lymph drainage and
decompression exercises. During the day, compression garments are worn whilst
the patient continues to apply compression bandages at night. Follow-ups are
conducted on patients and additional treatment sessions are carried out should
the patient be unable to maintain decongestion, or experiences swelling (Zuther
2005).
Problem Statement
The researcher is of the opinion that health professionals in South Africa
commonly regard cancer related lymphoedema as a 'normal' complication of cancer
and the treatment of cancer. Should a woman develop lymphoedema, she simply has
to accept and live with this complication, as there is no permanent solution
available. It is true that there is no cure for lymphoedema, but unfortunately
it tends to progress without adequate treatment, which leads not only to body
image disturbances and the accompanying decrease in quality of life, but also to
health related complications such as inflammatory conditions and even malignant
tumours (Foldi & Foldi 2006).
Purpose of the study
The purpose of the study was to demonstrate that breast cancer related
lymphoedema is manageable by means of Complete Decompression Therapy, thereby
improving the quality of life of the patient.
Research significance
It is not clear how many people worldwide live with lymphoedema, but it is
estimated that the number can be as high 250 million. Breast cancer is
considered to be the most common cause of secondary lymphoedema. Breast cancer
related lymphoedema is not new to oncology nursing; however, oncology nursing
research is extremely sparse. Only one South African study that addresses this
problem could be found. In South Africa, we have no evidence of the incidence,
the self-management attempts, lived experience or suffering of women living with
breast cancer related lymphoedema or the management thereof. This study
attempted to provide evidence that lymphoedema caused by cancer and its
treatment can be managed to improve the patient's quality of life.
Literature review
As this study involved nursing practice, Dorothea Orem's Self-care Deficit
Nursing Theory was selected as the theoretical framework (Berbiglia 2010).
Self-care refers to the activities individuals initiate and perform on their own
behalf to maintain life, health and well-being. The ability to engage in
self-care is influenced by various factors such as age, health state, health
care system factors and the availability and adequacy of resources. A self-care
deficit arises when the individual's self-care demands exceed his acquired
ability or power to engage in self-care. An adult requires nursing in the
absence of the ability to maintain the amount and quality of self-care needed to
sustain life and health continuously, to recover from disease or injury, or to
cope with their effects. Orem (1995) identified three nursing systems in patient
care. The first system, the wholly compensatory system, is applicable to the
person who is socially dependent on others for the continuation of their
existence (Foster & Bennett 2002); here nurse action is intense and patient
action limited. The second system is the partially compensatory system, where
the patient has a limited ability to meet his self-care needs and the nurse and
patient share the actions of self-care. The third system, the
supportive-educative system, is applicable in situations where the patient is
able to accomplish self-care but needs support in terms of learning new
self-care activities; here the patient action is intense whilst the nurse action
is limited to support (Edmond 2003). Both the partially compensatory and the
supportive-educative system were applied in the care of the patient. The patient
had limited ability to apply the self-care needed to manage her lymphoedema and
had to be assisted by the researcher, a registered nurse. The
supportive-educative system was used to teach and support the patient in
applying self-care during the induction therapy and to prepare her for the
self-care needed throughout the lifelong maintenance phase.
Orem (1995) urges nurses to ask and answer the questions, 'What is?' and
'What can be?', as a departure point in nursing practice situations. Nursing
practice, guided by the Self-care Deficit Nursing Theory, is characterised by a
caring approach where the nurse uses experiential and specialised scientific
knowledge to design and produce the art of nursing care (Berbiglia 2010).
Experiential and specialised knowledge of oncology nursing and Complete
Decongestive Therapy were applied to assess the patient in answering the
question 'What is?', as well as to design and implement a care plan to answer
'What can be?'
Definition of concepts
Quality of life: Quality of life is an ill-defined term and means different
things to different people (Fayers & Machin 2007). In 1993 the World Health
Organisation Quality of Life Group (Bowling 1996) defined quality of life as 'an
individual's perception of their position in life in the context of the culture
and value systems in which they live and in relation to their goals,
expectations, standards and concerns. It is a broad ranging concept affected in
a complex way by the person's physical health, psychological state, level of
independence, social relationships and their relationships to salient features
of their environment.'
Complete Decongestive Therapy: Complete Decongestive Therapy is specialised,
conservative, long-term therapy consisting of skin and nail care, manual lymph
drainage, application of bandages, decongestive exercise and medical compression
garments (Weissleder & Schuchhardt 2008).
Research design and methods
Research design
The design used was a mixed method, descriptive instrumental single case
study. An instrumental case study design is used when insight into an issue is
pursued or when a generalisation is challenged (Barroso 2010) and allows
researchers to focus on their concerns as highlighted by the case (Luck, Jackson
& Usher 2006). The research design was applicable to the study as the
researcher wished to present the uniqueness of the participant's situation and
challenged her own concerns, namely the perception of health professionals that
'nothing can be done for women living with breast cancer related lymphoedema'.
Context of the study
The context for the study was Tshwane, a municipal area in South Africa's
smallest province, Gauteng Province. The total population of Gauteng is 8.8
million, which represents approximately 20% of the total South African
population. More than 60% of the research and development of South Africa takes
place in Gauteng, which also has the hightest per capita income in South Africa.
Tshwane hosts a population of approximately 2 million (SouthAfrica.info 2010),
but it is unknown how many women in Tshwane have breast cancer or breast cancer
related lymphoedema, as no statistics are available.
Population and sample
The target population was all women living with breast cancer related
lymphoedema in Tshwane. The accessible population, from which the sample was
obtained (Burns & Grove 2005), was all women who had entered a specific
lymphoedema project in Tshwane. Scholars differ in terms of sample selection in
case studies as some are of the opinion that a 'typical' case should be
presented, whilst others indicate that the extraordinary case should be
presented (Barroso 2010). However, the patient with the most severe breast
cancer related lymphoedema in terms of volume, was selected for the study.
Data collection methods
Mixed methods were used to gather data. Self-report data were gathered using
a structured interview to explore the patient's general characteristics, her
history of health and illness and quality of life, whilst the use of structured
observation gathered data on the condition of the patient's affected arm and
progress during treatment. During the first consultation, the researcher
measured both the patient's arms with a measuring tape and the Four Centimetre
Method (Norton School of Lymphatic Therapy 2008), and calculated the volume of
each arm using the standard formula for a cylinder. This enabled the researcher
to estimate the lymphoedema volume of the affected arm. To monitor progress, the
researcher measured the affected arm on a weekly basis or when an increase in
volume was suspected. Daily inspections of the patient's skin were conducted for
signs of dryness, infection, maceration or any other abnormality. Findings were
documented on the patient's treatment record which was reviewed periodically.
The researcher gathered data from May to August 2009, whilst treating the
patient.
Three data gathering instruments were used:
* A questionnaire gathered data on the patient's general characteristics and
history of health and illness, with the Numerical Rating Scale of Cancer Pain
Intensity. This scale was adapted to determine the patient's quality of life
with the lowest number (0) a 'bad life that cannot get worse' and the highest
number (10) a 'good life that cannot get better'.
* An Excel spreadsheet served to document the circumference measurements of
the patient's arm and to calculate the lymphoedema volume. The treatment record
of the patient also served as a data gathering instrument as field notes were
made before or immediately after the patient's treatment.
* Photographs were taken as well.
Data analysis
Content analyses were used to review the treatment record of the patient, and
a template, guided by the layout of the case report (McCarthy & Reilly
2000), was used to categorise the data. Descriptive statistics were used to
determine the progress of the patient's arm in terms of volume reduction and the
quality of life measured by means of the Numerical Scale.
Case report
The case report will be presented using the guidelines of McCarthy and Reilly
(2000). The induction treatment of the patient's lymphoedematous left arm is
presented. A pseudonym is used to ensure her anonymity and confidentiality.
Description of the patient
Bertha was 61 years old, living in a township in Tshwane, married with three
children. Bertha was self-employed and part of the informal business sector.
History of the presenting condition
Bertha was diagnosed with breast cancer of her left breast in 2002. According
to the patient, she was initially misdiagnosed and only diagnosed with breast
cancer once the lump in her breast 'was as big as a fist'. She was scheduled to
receive six cycles of neoadjuvant chemotherapy but only received four as her
finger and toe nails became loose and 'smelled terrible'. After the four cycles
of neoadjuvant chemotherapy, a mastectomy, presumably a modified radical
mastectomy was performed, followed by radiotherapy. Bertha was unsure of when
her left arm started to swell but reported that her arm started swelling
significantly 5 years after her breast cancer treatment. She described the
swelling as follows:
My arm started swelling little by little ... it started swelling up
a little and it would go down, but not everything ... and then it
swelled again and go down but not completely ... and so it went on
an on ... slowly, slowly ... it was not sore.
Bertha reported the swelling during one of her follow-up visits to the
oncology clinic. She was referred to the occupational therapy department and had
a compression garment made for her, but she only wore it 'for a short time ...
it did not fit nicely'. In 2009, a member of the public referred Bertha to a
private health-care practitioner for the treatment of her lymphoedema but she
could not afford private health care and was referred to the researcher after
approximately 10 Complete Decongestive Therapy treatments over a period of 1
month.
According to Bertha, she never had cellulites, one of the common lymphoedema
related problems, or took any medication for the lymphoedema. She reported
suffering from hypertension and visited a primary health clinic every month for
the management thereof and attended the oncology clinic annually.
Assessment and care plan
The general impression of Bertha was one of an overweight person with a huge
left arm. Skin inspection revealed a surgical scar on her left anterior chest
wall. Radiation fibrosis with telangiectasia was also present; her left arm and
hand were enlarged and had various abnormal skin folds; skin changes were
present on her hand and forearm (Figure 1) and skin maceration was present
between her second and third, third and fourth, and fourth and fifth fingers. No
papillomas or lymphoree were detected and no shoulder range of motion impairment
was observed. With palpation, no temperature differences between her arms were
detected. Pitting could not be induced and fibrotic areas were found on her
lymphoedematous forearm. Stemmer's sign was negative. The estimated volume of
Bertha's right arm totalled 4615 mL, whilst her left arm totalled 8456 mL; the
estimated lymphoedema volume was therefore 3841 mL. Bertha gave her quality of
life 10 out of 10 and stated, 'My life is good ... this arm does not prevent me
from doing what I want...'.
Four weeks of induction therapy was planned, comprising manual lymph
drainage, 24-hour compression bandages, nail and skincare and patient education
5 days per week with self-bandaging during weekends.
Results
Expected outcomes
The expected outcomes were as follows:
* a 60% reduction in lymphoedema volume in the planned 4-week induction
therapy
* no macerated skin at the end of induction treatment
* a positive influence on the patient's quality of life.
[FIGURE 1 OMITTED]
Outcomes achieved
The following outcomes were achieved:
* The lymphoedema volume decreased by 33% decrease after 4 1/2 weeks of
therapy, with a 2-week interruption after the first 12 treatments. A 57.2%
reduction was achieved after an induction period of 10.5 weeks of therapy.
* No skin maceration was present at the end of the induction treatment.
* There was a positive influence on the patient's quality of life. She
stated:
This arm still does not prevent me from doing what I want... it is
much lighter ... so light that I can fly (raising her arms above
her head)... I do not wear a towel over my arm any more ... I did
that to stop people for looking and asking what happened ...
(Patient)
Ethical considerations
The ethical principles, as outlined in the Belmont Report (Polit & Beck
2010), namely beneficence, respect for human dignity and justice, supported the
researcher in conducting the study. Firstly, the researcher explained to the
participant what lymphoedema was; what Complete Decongestive Therapy consisted
of; and the self-care that would be required during the treatment and
maintenance phase. After receiving the participant's co-operation, informed
consent was obtained. Anonymity and confidentiality were ensured by interviewing
and treating the participant in private. The views of the participant were
respected and during each treatment session, time was allowed for queries to be
raised. The research proposal was peer reviewed by the Departmental and Faculty
Research and Innovations Committees of the Tshwane University of Technology and
approved by the Ethics Committee of the same university.
Trustworthiness
Validity and reliability
Validity and reliability were ensured by using a recognised method, the Four
Centimetre Method, to estimate the volume of the patient's affected arm. Only
the researcher took the circumferential measurements of the patient's arms to
ensure that the same tension was applied on the measuring tape and that the
positions of measurement were consistent. The validity and reliability of the
Numerical Rating Scale of Cancer Pain Intensity has been supported by literature
(Jensen 2003) and adapted to allow the patient to quantify her quality of life.
Trustworthiness was ensured by means of three strategies, namely credibility,
dependability and confirmability (Krefting 1991). Shenton (2004) questions
whether producing truly transferable results is a realistic aim for a single
study as it has the potential to disregard the importance of the context, which
is a key factor in qualitative research. Transferability was therefore not a
priority. Shenton (2004) guided the researcher with specific requirements to
ensure that the strategies were applicable. Credibility was ensured by the
researcher's prolonged engagement with the patient which created trust. Sampling
was random, as all patients treated by the researcher had an equal probability
of being selected. Triangulation was achieved by using different data gathering
methods namely, individual interviews, a scale, structured observation,
photographs and volumetric measurements. The research proposal for the study was
peer reviewed. Member checks were also carried out as the researcher reflected
on the self-report data and asked the participant whether the data were
documented and understood as intended. Dependability was ensured as a research
proposal was written to outline what was planned. The research report serves as
evidence of the implementation of the plan, with confirmability ensured by
developing an audit trail.
Discussion
The expected 60% limb volume reduction could not be achieved. Unfortunately,
it was unknown how much the limb volume was reduced during Bertha's treatment at
the private health-care practitioner. It might be possible, therefore, that the
total reduction was more than 60% and maybe as high as 68% which is the highest
reduction percentage reported in the literature (Norton School of Lymphatic
Therapy 2004). However, a 35% reduction in lymphoedema volume was achieved after
12 treatments. This compares positively with the findings of Thomas et al.
(2007) who found a median lymphoedema reduction of 36% after 12 treatments.
Mondry, Riffenburgh and Johnstone (2004) reported a median reduction of 138 mL
after a median treatment period of 2 weeks (10 treatments). Bertha's volume
reduction after 12 treatments was 1095 mL. The median duration of treatment
before reaching a measurement plateau is reported to be 2 weeks (Mondry et al.
2004) and 12 treatments (Thomas et al. 2007). Bertha's measurements did not
reach a plateau but went up and down. After 6.5 weeks of treatment, a 56.2%
volume reduction was achieved as the lymphoedema volume was 1686 mL, but could
not be maintained and the lymphoedema volume increased during the next 2 weeks
to 1912 mL. It took another 2 weeks of treatment to reduce the limb volume to
1639 mL, a 57.2% reduction. It was then decided to end the induction treatment
phase (Figure 2 illustrates Bertha's left arm at the end of the induction phase)
and to start the maintenance phase.
Compliance was a challenge and it affected Bertha's hand. Circumferential
measurements were taken on a Friday before treatment; however, the following
Monday, when the patient returned for treatment, her hand would be swollen
visibly more and painful. It was only after 7.5 weeks of treatment that Bertha
confessed that she did not bandage her arm during weekends but wore a
compression garment 'that fits like a worm, going in and out ...' in the skin
folds. Bertha further explained that the garment was short and ended above her
elbow resulting in her upper arm 'hanging loose'. When inspecting the garment,
it was found the garment was a sleeve without a glove or gauntlet. The garment
was much too small for Bertha's arm and consequently it formed a tourniquet at
her wrist and above her elbow which resulted in the swelling of her hand and
forearm, and it was impossible for her upper arm to fit in the compression
garment. It also became clear that she may not have had the trained social
support to assist her with the bandaging at home that she said she had. Bertha's
non-compliance is however not unique, because Mondry et al. (2004) found that an
increased number of treatments resulted in a marked improvement in volume and
girth, but poorer compliance. Foldi and Foldi (2006) are very pragmatic about
patient compliance and state that patient compliance to compression therapy in
many cases is poor, similar to that of taking prescribed drugs. As experienced
with Bertha, noncompliance with decompression therapy automatically leads to
relapse.
[FIGURE 2 OMITTED]
Despite the fact Bertha rated her quality of life to be 'a good life that
cannot get better', the limb volume reduction improved her quality of life. It
was unknown if her quality of life would have improved if her lymphoedema did
not drastically reduce. Weiss and Spray (2002) found that the quality of life of
patients with lymphoedema improves significantly after Complete Decongestive
Therapy, irrespective of the limb volume decrease, but Howell and Watson (2005)
found the exact opposite. These authors (Howell & Watson 2005) report that
despite a limb volume reduction, the quality of life of most women in their
study worsened as they realised that their lymphoedema would require lifelong
management and would therefore serve as a reminder of their breast cancer
experience.
Limitations of the study
The study has various limitations. Case studies lead to familiarity with the
participant, which limits objectivity, especially if the data were gathered by
means of observation with the researcher as the primary or sole observer (Polit
& Beck 2010). Case studies have also been criticised for lacking rigour
(Jensen & Rodgers 2001 in Luck, Usher & Jackson 2005). Luck et al.
(2001), however, advise researchers to address objectivity and rigour issues by
planning the case study research and applying the usual requirements for rigour
applicable to their chosen methods. Generalisation is also a limitation (Polit
& Beck 2010), as the study reflects the findings applicable to one person in
a specific context.
Conclusion
The study demonstrated and confirmed that despite imperfect patient
compliance, breast cancer related lymphoedema can be managed with Complete
Decongestive Therapy, with a resultant improvement of the quality of life of
women living with breast cancer.
http://www.hsag.co.za doi: 10.4102/hsag.v16i1.578
Acknowledgements
The study was funded by the Tshwane University of Technology.
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Johanna E. Maree (1)
Affiliation:
(1) Adelaide Tambo School of Nursing Science, Tshwane University of
Technology, South Africa
Correspondence to:
Johanna Maree
Email:
lize.maree@wits.ac.za
Postal address:
Private Bag X680, Pretoria 0001, South Africa
Dates:
Received: 26 Aug. 2010
Accepted: 08 July 2011
Published: 17 Oct. 2011
