Institutionen för Neurobiologi,

Vårdvetenskap och Samhälle

Sektionen för omvårdnad

Sjuksköterskeprogrammet

Examensarbete i omvårdnad 15 hp

_____________________________________________________________

Palliative cancer care in Uganda

The Nurse experience

Palliativ cancervård i Uganda

Sjuksköterskors erfarenheter

Författare: Karoline Ekblad och Sara Dorrian

Handledare: Lena Wettergren, Institutionen för Neurologi, Vårdvetenskap

och Samhälle

Examinator: Kristiina Heikkilä, Institutionen för Neurologi, Vårdvetenskap

och Samhälle

Sammanfattning

Bakgrund: Cancer ökar globalt och Uganda är ett av de länder som är beräknat att drabbas

påtagligt av ökningen. Cancervård i Uganda är underfinansierat och omkring 30 % av

cancerpatienter i låginkomstländer som till exempel Uganda får palliativvård. Sjuksköterskan

har en nyckelroll inom den givna cancervården.

Syfte: Syftet med studien var att beskriva palliativ cancervård i Uganda utifrån

sjuksköterskors erfarenheter.

Metod: En kvalitativ metod har använts. Data har samlats in genom semistrukturerade

intervjuer med sex sjuksköterskor anställda på Ugandas cancer institut. Ett bekvämlighets

urval användes och informerat samtycke erhölls. Intervjuerna transkriberades och data

analyserades med hjälp av så kallad kvalitativ innehållsanalys.

Resultat: Följande tre kategorier utgjorde resultatet: Utmaningar, Lindra lidande och

Betydande relationer.

Slutsats: Att ge cancervård i Uganda innebär ett flertal utmaningar. Underfinansiering leder

till att patienter avlider till följd av brist på nödvändiga resurser. Patienters lidande kan lindras

genom smärtlindring och interaktion. Sjuksköterskorna kommer patienterna nära och blir

beroende av anhöriga i omvårdnaden.

Abstract

Background: Cancer is increasing globally and Uganda is estimated to be particularly

effected. Cancer care in Uganda is underfunded and about 30 % of the cancer patients in low-

income countries such as Uganda are being given palliative care. Nurses play a core role in

providing the care to the patients.

Aim: The aim of the study was to describe palliative cancer care in Uganda as shown through

the nurse experience.

Method: A qualitative method was used and the data was collected by semi-structured

interviews with six nurses working at the UCI. The sample was selected using convenience

sampling and informed consent was obtained. The interviews were transcribed and the data

was analysed using content analysis.

Results: The three following categories constitute the result: The challenges, Easing suffering

and Significant relationships.

Conclusion: Cancer care in Uganda is seen to face major challenges. The financial

underfunding leads to lack of necessary resources, and it so happens patients die due to severe

shortages. Patient suffering is eased by pain control and interaction. The nurses become

attached to the cancer patients and the caregivers are needed to provide acceptable care.

Acknowledgements

We would like to thank Jackson Orem and Victoria Walunsansa at the Uganda Cancer

Institute (UCI) for generously allowing us to carry out our study and all the staff involved for

their valuable help. To our supervisors, Lena Wettergren, Rose Nabirye and Allen Naamala,

we would like to give a deep appreciation of the encouragement and guidance you gave us.

Also we would like to thank Tom Ngabirano for his appreciated assistance. We wish to

express our gratitude toward the Department of womens and childrens health at Uppsala

University and the Swedish International Development Cooperation Agency (SIDA) who

granted us minor field study (MFS) scholarships. Last but not least a special thanks to our

families and friends for their love and support.

Table of Contents

1. Introduction ............................................................................................................................ 1

2. Background ............................................................................................................................ 2

2.1 The cancer burden ........................................................................................................ 2

2.2 Health care in Uganda .................................................................................................. 2

2.3 Cancer care in Uganda ................................................................................................. 3

2.4 Palliative care ............................................................................................................... 3

2.5 Problem statement ........................................................................................................ 4

3. Aim ......................................................................................................................................... 5

4. Method ................................................................................................................................... 6

4.1 Data collection .............................................................................................................. 6

4.2 Data analysis ................................................................................................................ 6

4.3 Ethical considerations .................................................................................................. 7

5. Results .................................................................................................................................... 8

5.1 The challenges .................................................................................................................. 8

5.1.1 Poverty ...................................................................................................................... 8

5.1.2 Lack of resources ...................................................................................................... 9

5.1.3 Lack of staff .............................................................................................................. 9

5.1.4 Patients lack of knowledge regarding cancer .......................................................... 10

5.1.5 Wish for specialisation ............................................................................................ 10

5.2 Easing suffering .............................................................................................................. 10

5.2.1 Holistic perspective ................................................................................................. 10

5.2.2 Pain control ............................................................................................................. 10

5.2.3 Interaction ................................................................................................................ 11

5.3 Significant relationships ................................................................................................. 11

5.3.1 Attachment .............................................................................................................. 11

5.3.2 Depending on caregivers ......................................................................................... 11

6. Discussion ............................................................................................................................ 12

6.1 Method discussion ...................................................................................................... 12

6.2 Result discussion ........................................................................................................ 13

6.3 Relevance for nursing science and society ................................................................. 14

6.4 Conclusion .................................................................................................................. 15

References ................................................................................................................................ 16

Appendix 1 ............................................................................................................................... 19

Appendix 2 ............................................................................................................................... 21

1

1. Introduction The idea to conduct our bachelor thesis abroad developed during an exchange program we

participated in Sydney in the spring of 2012. We were both intrigued by practising health care

outside Sweden. Our curiosity and interest lead us to contact a teacher and professor at the

Nursing department at Karolinska Institutet who was conducting research in Uganda. This

resulted in the UCI agreeing to host our study project and with financial assistance from

MFS-scholarships we were enabled to spend a period of eight weeks in Uganda. The UCI is

one of the major cancer research and treatment centres in Uganda and it was a great

opportunity for us to conduct this study there. Once we started to read about cancer care in

Uganda we began to appreciate the complexities within this field of work, and we realised

that it should be interesting to study. We will soon be registered nurses and therefore it was

motivating to have nurses share their experiences of giving care.

2

2. Background 2.1 The cancer burden

Cancer is one of the leading causes of death worldwide and in 2008 it accounted for 7.6

million deaths (World Health Organization (WHO), 2010). About 70 % of these deaths

occurred in low- and middle-income countries. The numbers of people diagnosed with cancer

is increasing and by 2030 it is estimated that 13.1 million people will die of cancer (WHO,

2010). This increase will mostly be in low-income countries and Sub-Saharan Africa is

predicted to be particularly effected (Thun, DeLancey, Center, Jemal, A, Ward, 2009). In this

region 70% of diagnosed cancer patients died in 2007 (Harding et al., 2011). According to

Okuku et al. (2013) HIV is one major factor for the cancer increase in Sub-Saharan Africa

and it is estimated that 30% of the cancer cases are related to infections. Changing lifestyles

due to economic growth and increasing age of the population are other reasons for this

increase (Parkin et al., 2008).

Uganda is located on the east coast of Sub-Saharan Africa and is seen to have a high cancer

burden (Parkin, Nambooze, Wabwire-Mangen & Wabinga 2010). It has a population of 32

million people and each year approximately 22 000 people die in Uganda due to cancer

(Okuku et al., 2013). The most common cancer types among male adult patients in Kampala

(Uganda) is prostate cancer and Kaposi’s sarcoma, while cervix and breast cancer is most

common amongst females (Parkin et al., 2010). Cancer among children has increased rapidly

without known reason, the most common type being leukaemia in 2000. In general, cancer

patients in Uganda are diagnosed and treated in the later stages of their illness, which is

reflected in the high mortality rate. The fact that cancer treatment is expensive is a

contributing factor for this outcome (Orem & Wabinga, 2009).

2.2 Health care in Uganda

The health sector in Uganda consists of a private and a public part. The Ministry of Health

(MOH), a department of the Ugandan government, published the second National Health

Policy (NHP II) (2010) that describes the their strategies for health care. The focus of the

policy is health promotion, disease prevention, early diagnosis and treatment of disease. It

states that the government is obliged to provide all people with basic health care. However

Zikusooka, Kyomuhang, Orem and Tumwine (2009) claims that it is difficult to achieve due

to the sector being largely underfunded. According to Utrikesdepartementet (2010) only 9 %

of the national budget goes to the health care sector, pointing out that it is underfunded. Public

health services in Uganda are for free but are lacking in quality, accessibility and provision of

medicines (Zikusooka et al., 2009).

Nurses are one part of the health care system and there is a global shortage of them, especially

in Sub-Saharan Africa (WHO, 2006). In Uganda one reason for the shortage is that nursing

students prefer to work abroad due to low salaries in Uganda (Nguyen et al., 2008). Since

nurses and their services have been recognized by the WHO (2001) as the core of the health

care system the lack of them in countries such as Uganda is critical. To become a nurse in

Uganda you can either study to get a certificate, diploma or degree. To obtain the degree it is

required to attend the Bachelor of Nursing Science programme (BNSc) at university level.

The degree is a four-year education including one year of paid internship and a bachelor in

midwifery. The diploma requires three and a certificate two years of studies (P. Wampaalu,

personal communication, February 24, 2013).

3

2.3 Cancer care in Uganda

As in many African countries cancer care in Uganda is a low priority for governments (Parkin

et al., 2008). Orem and Wabinga (2009) discuss several barriers for cancer care in Uganda

and other African countries. Low political priority resulting in underfunding is one. Other

barriers are the large increase of cancer patients, low cancer awareness in the population and

lack of specialized health care workers. Additional limitations such as lacks of capacity for

diagnose and treatment as well as expensive medicines adds up to a challenging situation.

Cancer screening, treatment and management in Uganda is carried out mainly from two

centers, The Uganda Cancer Institute (UCI) and St Mary’s Hospital. The UCI started in 1967

and is funded by the Ministry of health. The institute consists of four departments:

Lymphoma treatment center (LTC), Solid tumor center (STC), Outpatient department (OPD)

and the Private department. The LTC and STC are the inpatient care departments. At the

moment there are 67 nurses working at the UCI, none of whom has a specialisation in

oncology. Furthermore there is no nursing oncology education in Uganda (A. Naamala,

personal communication, January 25, 2013). Approximately 2000 newly diagnosed cancer

patients get admitted to the UCI annually (Okuku et al., 2013). In order to treat cancer one or

any combination of chemotherapy, surgery and radiotherapy can be applied. Chemotherapy is

given to the patients at the UCI and it is normally administrated in cycles. A cycle may last

from one to several days and it can be one drug or a combination of several used in the same

cycle (Hansson, Henriksson & Petersson, 2008, p. 185). Chemotherapy has a negative effect

on the bone marrows production of platelets and leukocytes, which can lead to weeks of

leuko- and thrombocytopenia, and thus increase the risk of severe haemorrhage and infections

(Hansson et al., 2008, p. 211). Other acute side effects of chemotherapy include vomiting,

diarrhoea, fever, pain and fatigue (McGarvey, Baum, Pinkerton & Rogers, 2001). To perform

surgery and radiotherapy the UCI collaborate with Mulago Hospital. Much of the care at the

UCI is palliative and for advice and support the institute work together with the Hospice

Africa Uganda (HAU) (A. Naamala, personal communication, January 25, 2013). The HAU

is a centre that provides and facilitates palliative care in Uganda and other African countries.

2.4 Palliative care

According to the WHO (2013) the majority of cancer patients get in contact with health care

when they are in a late stage of their illness, making most of the care palliative in nature.

About 30% of the cancer patients in low-income countries are estimated to be managed

palliative (Okuku et al., 2013).

WHO (2013) define palliative care:

Palliative care is an approach that improves the quality of life of patients and their

families facing the problems associated with life threatening illness, through the

prevention and relief of suffering by means of early identification and impeccable

assessment and treatment of pain and other problems, physical, psychosocial and

spiritual. (WHO, 2013, http://www.who.int/cancer/palliative/definition/en/).

As presented in the definition easing suffering is one part of palliative care. Jakobsson,

Andersson & Öhlén (2009, p. 345) recognise reducing suffering as the overall purpose within

palliative care. Suffering is something that everyone has to face in their life and it is has to be

taken into consideration when providing care. The experience of suffering is affected by the

individual and the surrounding tradition and culture (Wiklund, 2009, p. 296). Pain and illness

can lead to suffering but it does not necessarily need to be so. It is rather the meaning of pain

and illness for the patient that decides the amount of suffering they experience (Seymour &

4

Ingelton, 2008). Easing patient suffering is one of the major responsibilities for a nurse

(International council of Nurses, 2007).

The HAU presented palliative medicine for the first time in 1993. Mwangi-Powell (2012)

means that even though Uganda can provide some excellent institutions for palliative care, it

is not sufficient to meet the needs. The care needs required for patients in Uganda are

presented by Harding et al. (2011) and it shows that the primary needs were pain control and

psychological support. Harding and Higginson (2005); Merriman (1996); Harding et al.

(2011) point out that control of pain is important within palliative care, but unfortunately they

describe a shortage of opioid availability. Except for control of pain the palliative care

patients in Uganda and other African countries need spiritual, emotional and financial support

(Harding & Higginson, 2005). Selman et al. (2011) describe that for patients receiving

palliative care in Uganda close relationships were highly important. However for patients in a

hospital family members might not be able to come and visit due to transportations costs

(Gysels, Pell, Straus & Pool, 2011).

For patients that get admitted to the UCI it is usually required that they have a caregiver with

them. A caregiver is often a family member or a friend. This is because the caregiver is

needed to be a part of the care, for example to feed and manage side-effects of chemotherapy

(A. Naamala, personal communication, February 25, 2013). It is well known that caregivers

of palliative patients are experiencing financial and psychological burdens (Gysels et al.,

2011) Providing the patients with food, medicine and water leads to impoverishment and the

emotional demands can sometimes lead to depression. The caregiver’s burden of palliative

care is mentioned to be worsened by the lack of hospital resources such as drugs, beds and

staff.

2.5 Problem statement

Cancer is increasing globally and Uganda is expected to be particularly effected. With an

increasing number of patients follows an increased need of cancer care. Uganda and other

African countries are facing challenges in providing cancer care due to health care being

underfunded. The patients usually get admitted for treatment in a late stage and one third of

the world’s cancer patients are being treated palliative. As a nurse you can work anywhere in

the world, and it also means that you can give care to patients from many different cultures. It

is therefore crucial as well as valuable to conduct studies like this one. Nurses play a key role

in providing care to the patients, making it important to present their experiences.

5

3. Aim The aim of the study was to describe palliative cancer care in Uganda as shown through the

experiences of nurses.

The specific research questions were:

1. What kinds of challenges are described?

2. How is patients suffering eased?

3. What do nurses think around giving care?

6

4. Method

In this study a qualitative method was suitable since the aim was based on individual

experiences (Holloway & Todres, 2006, p.193). The approach was inductive, which means

working from empirical data to theory (Polit & Beck, 2010, p. 13).

4.1 Data collection

Individual face-to-face interviews were conducted with nurses working at the UCI. The

method of using personal interviews is considered to lead to high quality data and the

possibility to get rich answers (Polit & Beck, 2010, p. 295).

The sample included six informants, they were chosen through convenience sampling, which

often is efficient. It was also chosen due to time limitation that occurred during the process.

The sample selection began at the UCI when the chief nurse asked who of the nurses were

willing to participate. A schedule for the interviews was arranged. The including criteria were

at least two years of working experience with cancer care and to be fluent in English. The

interviews were conducted during working hours and when it was possible within the daily

work schedule. The interviews were performed in two different settings at the institute. Four

interviews were held in the UCI boardroom and two were held in the counselling room at the

LTC department. The students performed three interviews each. During two of the interviews

both students were present, one acted as the interviewer and the other one as an observer. The

interviews lasted between 30-90 minutes and they were audio recorded. The interviews were

conducted with semi-structured questions, which according to Polit and Beck (2010, p. 341)

encourage the informants to talk without restraint. The questions were prepared in an

interview guide. See appendix 1.

4.2 Data analysis

The student who conducted the interview transcribed the audio recording. The transcriptions

were made the same day as the interview, since it is of importance that it reflects the totality

of the interview experience (Polit & Beck, 2010, p. 465). To be able to separate the interviews

and to preserve confidentiality they were coded. The data was analysed according to

qualitative content analysis, as described by Granheim and Lundman (2008). This method is

suitable for analysing transcribed data from interviews since it focuses on interpretations of

text material. To get a deep understanding for the material the students read all transcriptions

several times. Then meaning units were identified, which are parts of the transcripts that can

be connected together according to the content, for example through similar words or

sentences. Each meaning unit were condensed to make the material shorter and easier to

handle. The condensed meaning units were given codes, which briefly describe the content of

the meaning unit. By collecting the codes with similar content sub-categories were created.

These sub-categories could then come together and create major categories. It is pointed out

that the content within the categories should be similar but that the categories compared to

each other should differ.

7

Example of the content analysis

Meaning

unit (mu)

Condensed

mu

Code Sub-

category

Category

You make

sure

somebody is

out of pain,

obviously

that one has

to be solved

Make sure

that the

patients are

out of pain

Relieving

physical

pain

Pain control Easing suffering

If there is no

money or

medicine,

obviously

someone has

to pass on

Without

money or

medicine

patients pass

on

Lack of

medicines

Lack of

resources

The challenges

Some of

these

patients are

long staying

and become

almost

family

Some stay a

long time and

almost

become

family

Becoming

family

Attachment Significant

relationships

4.3 Ethical considerations

The Makerere University School of Health Sciences Institutional Review Board (MAK-SHS-

IRB) granted ethical approval. Applying for this is necessary when conducting research in

Uganda. It took almost four weeks to obtain which created a time limitation. Gaining approval

ensured that this study followed ethical principles described by Polit and Beck (2010, p. 121).

Before the interview started a written consent form according to MAK-SHS-IRB (see

appendix 2) was obtained. According to Polit and Beck (2010, p. 127) obtaining it is an

important procedure for protecting the informant’s right to self-determination. The consent

form appraises about the purpose of the study, that the interviews were confidential, that

participation is voluntary and that withdrawal at any time is allowed; however no one did. The

transcriptions were coded which ensured that the informant’s names were kept unrevealed,

which was considered to be important according to the students. In qualitative research

ensuring confidentiality is the main focus, since it is almost impossible to ensure anonymity,

because the qualitative method leads to the investigators becoming involved with the

informants (Polit & Beck, 2010, p.129). That the participants might see the interviews as a

chance for reflection of their profession and the impact they have on the patient’s lives was

considered a benefit. It was presumed that they would feel positive about contributing to

research. Once the interviews were recorded the data was moved from the audiotape devices

on to an external hard drive that was kept safe in a locked drawer. This material will be kept

until the day the study have been approved and after that it will be destroyed.

8

5. Results

The sample consisted of six female informants with different educational levels and working

experience. Their working experience expressed in a median was four years.

The result will be presented below, in three categories. The first category is “The challenges”

and it contains five sub-categories: poverty, lack of resources, lack of staff, patients’ lack of

knowledge regarding cancer and wish for specialisation. The second category is “Easing

suffering” and it contains three sub-categories: holistic perspective, pain control and

interaction. The third and last category is “Significant relationships” and it contains two sub-

categories: attachment and depending on caregivers.

The main findings when interviewing the informants were the challenges they face when

working within palliative cancer care. Descriptions regarding patients’ poverty, lack of

resources, staff and knowledge are central in the result. Furthermore the informants shared

information on their thoughts about easing patient suffering. They also described how

significant relationships to patients and their caregivers are a part of the care.

5.1 The challenges The statements included that the poverty of the patients is a challenge within the palliative

cancer care. The informants describe how essential resources and staff are lacking.

Furthermore patients are lacking knowledge about cancer and specialized nursing education is

missing. “Challenges” is the major category in the result since it was the main issue brought

up by the informants themselves during the interviews. The category derived from the

following sub-categories: poverty, lack of resources, lack of staff, lack of knowledge and lack

of specialization.

5.1.1 Poverty

It is explained that the patients who seek care are very poor. To get treatment the patients may

have to pay for drugs themselves whenever it runs out of stock at the institute. Many patients

lack financial resources and it is difficult for them to afford the necessary drugs, in order to be

treated. Informant F tells that drugs are very expensive and because of poverty people die

premature. Sometimes patients and caregivers try to raise money by searching for funding but

it often fails due to poverty in the country. Informant D states: “Drugs drugs, the caregiver

could not raise money for the drugs…she had to pass on”. Informant B gives another example

A poor mother from a rural area with two children sick with Burkitt’s lymphoma. One

got treatment, had a relapse and then given palliative care. The other one has an

infection, resistant to the antibiotics free of charge at the hospital. Vancomycin would

help, but the mother could not afford it. It is very stressing due to the knowledge that the

boy could be fine (Informant B).

Informant C describes that when a child has cancer the parents can be forced to pay for

treatment, even though they cannot afford it. It is described that asking parents to pay for

drugs when they do not have money for food, or school fees can lead to depression and cause

trauma. If the patients get treatment there is another challenge because of poverty. Patients

might have difficulties to go back home from the hospital since transportation requires

money. Facing that dilemma informant E declares: “Once in a while you may have to give

from your own pocket for food, or to give them a little transport, if you can afford”. The

9

informants express a concern regarding the patients who need to come back to the hospital for

further treatment, saying that they might not be able to do so due to transportation costs.

5.1.2 Lack of resources

All of the informants describe lack in different resources such as medicine, materials,

equipment and space, as a challenge when giving care to the patients. Several informants

describe how everyday material such as gloves, swabs and cannulas are running out of stock,

one state: “When you do dressings, we don’t have materials, gloves and what, so we touch the

wounds by our own hands, it is disgusting”(Informant B). The supply of fluids and medicine

for the patients are not enough. Informant E means that when you do not have the right

material, you need to improvise to try and solve the problem the best you can. Furthermore

the lack of equipment is described as a challenge, and informant D explains that the ward only

has one blood pressure machine for all of the patients, so by the time you have taken the

blood pressure on the last patient the batteries are running low, and you end up with an invalid

result. It is mentioned that machines for taking electrocardiography is shared with Mulago

hospital, thus making the process for investigations slower. Several informants describe a

problem with providing oxygen because the cylinders are not enough and the concentrators

are depending on electricity, one state:

The boy was unconscious and he was put on oxygen for some days. So the oxygen was

provided through a concentrator were you have to use electricity. It happened that the

power went off…so this boy passed on there and then: So you ask yourself, if we had a

cylinder, maybe this wouldn’t happen (Informant A).

Lack of blood products to give to bleeding patients is also mentioned as a challenge and one

state: “It is difficult to get blood for those leukaemia patients. I think we lost a patient due to

that this weekend…”(Informant D). Several informants describe the confined working

environment as challenging since there are patients lying on mattresses on the floor and sitting

out on the veranda. Informant C exemplifies difficulties with putting in cannulas, when

someone is on the floor or, it might be difficult to find places to hang the fluid chemotherapy.

It is also described that with so few beds in relation to the number of patients, it can be

difficult to accommodate the patients through out the treatment.

The lack of resources lead to emotional distress amongst the informants, one state: “I get

reminded that this person dies because of these things missing, it makes you feel like you are

a part of the cause of death” (Informant A). Several informants also describe moral stress by

not being able to help the patients, due to lack of resources, and how this leads to frustration

since they cannot do the job as good as possible. It was mentioned that the lack in resources is

an economic issue on a political level, one state: “I can’t say it is the institution that is lacking

really but it is rather the country and the high officials…the institution actually does its best

“(Informant F).

5.1.3 Lack of staff

All the informants describe that there is a shortage of staff and one state: “The staff is limited,

we have very few nurses, you could say almost 1 nurse for 50 patients” (Informant E). Several

informants describe the situation as overwhelming due to few nurses working on the ward,

but also because of the increasing numbers of patients, one states: “Another challenge is the

shortage in staff…the number of patients’ increases, not that cancer is increasing now, but

more because people are starting to get aware of cancer, looking for treatment” (Informant

A).

10

Even though the numbers of patients are increasing, the informants describe that the number

of nurses is not. The work environment is described as hectic with a lot of things to be done

and the need to prioritize. Informant C points out that you sometimes are not able to do things

when they are urgent. The heavy workload and lack of staff leads to the informants working

overtime: “You may stay at work until 7 pm…it becomes voluntary work, but you have to do

it” (Informant B). It is mentioned, that working more hours is sometimes done, at the expense

of ones own family. Several informants describe, that the consequence of limited staff

resources, is that you do not have enough time for the patients.

5.1.4 Patients lack of knowledge regarding cancer

Several informants describe that various people in Uganda, believe cancer to be a curse. This

means a challenge when whenever giving care. Informant A says that some patients, do not

have the knowledge about what cancer is or what it means. It is described that many patients

do not understand reasons for developing cancer: “Some believe in myths, thinking they can

have been bewitched” (Informant B). Regarding knowledge about the cancer care and

treatment, some patients have unrealistic expectations of the help they seek: “Sometimes they

get here and they think one injection is enough, and that they later on can go back home”

(Informant A).

5.1.5 Wish for specialisation

The informants speak about a lack of knowledge within the cancer area they are working in. It

is stated that: “Cancer care is very big, I need to specialise in oncology. I am not doing it the

proper way” (Informant B). The informants state that lacking of oncology specialisation leads

to feeling inadequate and therefore making it challenging to provide care. Furthermore they

devotedly express a wish to improve their nursing skills, in order to be able to improve the

care they give to their patients by saying: “It is good to be a nurse, better to be an oncology

nurse”(Informant E).

5.2 Easing suffering It is described by the informants how patient suffering is eased. They describe different

aspects to consider, such as talking with patients and relieving them from pain. The category

derived from the following sub-categories: holistic perspective, pain control and interaction.

5.2.1 Holistic perspective

It is described that the patients are miserable and suffering and therefore many issues have to

be considered while giving care. One informant states following: “You must deal with them

medically, psychologically and emotionally…you have to apply all these aspects” (Informant

C). It is pointed out that there are a lot of aspects in easing suffering for the patients, such as

giving advice, hope and helping with anxiety. General nursing care is mentioned: “General

nursing care...the total care for the patient. The vitals, find out if your patient is eating well

and passing out, the input and output the weight. All those things we shall consider. The

comfort, everything” (Informant D).

5.2.2 Pain control Informant D describes pain as the major problem for the patients, and controlling the pain

should be addressed primarily. Several informants agree that the pain has to be managed

directly and one state: “You see our patients, they have that long time pain, that chronic pain.

Pain controllers are given, mainly morphine” (Informant A).

11

5.2.3 Interaction

Several informants describe that talking and interacting with the patients is an essential

intervention, when easing suffering, one state: “We have to talk to the patients, many of them

are too depressed, and they are too emotional, talking is necessary” (Informant C).

According to the informants, many patients are depressed and therefore talking with them, is

important in their care. Further they describe that the approach and the interaction ease

suffering and informant B claims counselling to be needed. Giving hope to the patients is an

additional intervention that is mentioned. It is described that this can be achieved by taking

the patients around the ward so they can meet other patients that are doing well.

5.3 Significant relationships In this category an attachment between the patients and the nurses, is described as a part of

the care. Further, it is explained how the nurses depend on caregivers to help them give care.

This category derived from following two sub-categories: attachment and depending on

caregivers.

5.3.1 Attachment

All informants describe how they get attached to the patients, since they take care of them for

a long time. Several informants describe the patients and the caregivers almost become

family: “Some of these patients are long staying and become almost family” (Informant C). A

devotion to the patients is expressed and informants describe, that they think about the

patients outside work. Since death is common within palliative cancer care, Informant E

describes feeling a strong sadness when someone passes on. When patients die, it is said to be

difficult since they have become friends. However the work continues and one thought about

how to cope is presented as following: “Their love for you keeps you going” (Informant C).

The informants also mention that you have to look forward, and think about the other patients

who need your help. That keeps you going.

5.3.2 Depending on caregivers

It is described how the informants involve for example mothers, of ill children in the care, in

order to manage the workload of the day: “You involve the patients and the caregiver…we tell

them everything. We teach them how to use things and for example to report fever and urine

output. They actually play some of our part” (Informant C). Therefore a mutual relationship

between the nurses and caregivers is established. To emphasise it further, Informant D

enlightens the following: “They are the ones who wash for the children, to bath them and

provide extra meals. They do most of the work”.

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6. Discussion

6.1 Method discussion

In qualitative research, trustworthiness is essential when evaluating the study process. In 1985

Lincoln and Guaba identified the following criteria to obtain trustworthiness: credibility,

dependability, confirmability, transferability and authenticity. Credibility seeks the truth

within the data and interpretations. Dependability strive to achieve data that consist over time.

Confirmability seeks objectivity within the data and interpretations. Transferability refers to

the applicability of the findings. Authenticity refers to which extent the data conveys the

surrounding context (Polit & Beck, 2010, p. 192 & 193). To achieve trustworthiness it is

important that the students are experienced in interviewing. The quality of the data in this

study could lack because of the inexperience of the students, this can be seen as a weakness.

Regarding the choice of convenience sampling Procter and Allan (2006, p. 181) states that it

can increase the chance for a trustworthy relationship between the informants and researchers.

The chief nurses asked which of the nurses were willing to participate, something that could

lead to data bias and effect the credability. However the students felt the data was not

weakened by the used sampling method and it was clear that the informants sincerely wanted

to participate.

An including criteria was two years of working with cancer care. It was decided through a

discussion with one of the supervisors, thinking two years would be enough. Only English

talking informants were included since English was spoken by the students and the

informants. Since the students are not used to the English spoken in Uganda there was a risk

for misinterpretations. When something was unclear the students asked the informant to

clarify and also the audio recordings helped to explain uncertainties when transcribing.

Two of the interviews were performed in the counselling room at the LTC department,

allocated within the ward and therefore interruptions occurred several times. People

interrupted since they were looking for someone in the room, or had a question to the nurse

being interviewed. This could have affected the informants, however they stated it did not.

The interruption caused the students to become unfocused, for a short while. To strengthen

the data outcome, during two of the interviews both students participated, one acted as the

interviewer and the other one as an observer. This was done to ensure confirmability, but the

students did not feel as if this increased the understanding for the interview.

Semi-structured interviews were used, which according to Polit and Beck (2010, p. 341)

encourages the informants to talk without restraint, which is considered to strengthen the data.

The students appreciated if the informants spoke freely. This was pointed out before the

interview started, and it was written in the consent form. To make sure the content of the

interviews could be comparable, an interview guide was used. It was not possible to strictly

follow it since the students searched to achieve a good flow during the interview, and to make

the informants comfortable.

To ensure that the data would not be lost, it was recorded with two audio devices. To get a

wider understanding of the collected data, the students started the analysis by reading all

transcripts several times, to achieve credibility and confirmability. Constant discussions were

held to make sure no data of importance was neglected. Polit and Beck (2010, p. 107)

mentions that if there is more than one investigator, discussions between them can minimize

bias.

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The students come from a high-income country and a western culture, which means they have

a different context. Granheim and Lundman, (2008) say it is of importance to understand the

informants cultural context in order to comprehend and analyse the data accurately.

Fortunately the students had some weeks to begin to appreciate Ugandan culture before the

data analysis started, this increased the authenticity and strengthened the study. To clarify the

analysis process, parts of the category-scheme is presented in the method section. Polit and

Beck (2010, p. 466) express that this helps the readers to critique. Since this is the first time

the investigators conduct a content analysis, the trustworthiness maybe somewhat weakened.

Obtaining ethical approval by MAK-SHS-IRB, ensured that the study followed ethical

principles such as, beneficence, respect for human dignity and justice. Furthermore, the

students offered to share the finished study with the informants, which according to Polit and

Beck (2010, p. 131) is a part of following ethical principles. The interviews were held during

working hours at the UCI, meaning colleagues may predict who the informants where. The

reason for conducting the interviews during working hours, was that it suited the informants.

A risk of exposing the informants occurred, and to keep confidentiality as far as possible

codes were used.

6.2 Result discussion

The aim of the study was to describe palliative cancer care in Uganda through the nurse

experience. The data collection resulted in interesting findings. Central in the result are the

challenges within cancer care. The challenges are patients’ poverty and lack of resources such

as medicine, material and equipment. Furthermore the shortage of staff, increasing number of

patients, and patients’ lack of knowledge is presented. Pain control and interaction, are

brought up as the most essential interventions for easing suffering. The minor, but yet relevant

part of the result are the significant relationships that develop between the nurses, patients and

caregivers.

One of the research questions, aimed to find information about the challenges cancer care is

facing and the result reveals that several challenges exist. This confirms the challenges Orem

and Wabinga (2009) bring up to discussion. Since the government underfund cancer care the

consequence is lack of resources for treatment and cure. Not only does the result show that

cancer medicines are missing, but also essential material and equipment for general nursing

care. The findings regarding patients’ financial difficulties, can be compared to a study

performed in a similar cancer care setting in Tanzania, conducted by Masika, Wettergren,

Kohi and von Essen (2012). That study was based on interviews with patients, and they

described lacking money for drugs and transportation to the hospital. The results from this

study were based on interviews with nurses, however they revealed similar financial

difficulties. Cancer patients are increasing in Uganda, and the results point out that higher

cancer awareness in the population could be one reason for the increase. An increasing

awareness could lead to more people seeking health care, and having a chance for treatment.

However Orem and Wabinga (2009) mean that the cancer awareness is low in Uganda, but

the result might indicate that this is about to change. The increased number of patients makes

it even more challenging for the nurses to manage in providing palliative care. Nevertheless

the increased awareness in the future might lead to patients seeking and receiving treatment in

earlier stages of their illness, and hopefully the care then does not have to be palliative to the

current extent.

It is claimed in the result that the number of staff is not increasing to cope with the increasing

number of patients. According to WHO (2006) there is a global shortage of nurses, so this

14

situation does not seem to be unique for Uganda. Nevertheless, the ratio of 1 nurse taking care

of 50 patients indicates a severe shortage. Caregivers become involved in providing care and

are mentioned to play a significant role. Orem and Wabinga (2009) state that close

relationships can be seen as a resource in providing cancer care. However, Gysels et al.

(2011) describe that caregivers have experienced emotional and financial burdens, from

giving palliative care. Caring for the relative means less time to get income, and therefore

sacrificing resources. Reasons for why the caregivers become so involved are indicated in the

result to be a consequence of staff limitations, however it might also be due to close family

relationships in Uganda.

Another research question aimed to describe how patients suffering can be eased. Since it is

known that the patients seek cancer care in a late stage of their illness palliative care is given.

According to Jakobsson et al. (2009) easing suffering is central within palliative care. It is

described that the patients are in pain, and pain control is stated as the primary intervention to

ease suffering. Masika et al., (2008) claim pain to be a major issue for the cancer patients in

Tanzania. This indicates that what the nurses identify as problems, agree with the patients’

descriptions. The result shows that interacting with the patients is another intervention for

easing suffering. Through Flensner, Öhlén (2009, p. 120) describe being present with the

patient, is essential to ease the suffering. Presence can be seen as a part of interaction, and

therefore the result describe relevant interventions. Talking with the patients does not require

material resources, and it should not be underestimated, however with the heavy workload

nurses find time is not enough.

The result shows that, working within cancer care in Uganda is demanding, for the nurses and

causes them emotional distress. Wanting to help a patient, but not being able to, because the

things you need are missing leads to frustration. The nurses often become close to the patients

so when they pass on it is painful. These findings answer the third research question,

regarding thoughts about giving care. The emotional experiences should raise a concern, and

is something that requires more research. The result has revealed that patients for various

reasons seek health care in a late stage of the cancer making the care palliative, a fact that is

concerning, since early detection of cancer is central for a successful treatment (WHO, 2010).

It is mentioned that, this might be due to patients believing in witchcraft, or thinking cancer is

a curse. These health care seeking behaviours amongst cancer patients in Uganda could also

be interesting for further research.

6.3 Relevance for nursing science and society

The fact that cancer is increasing, and that nurses play a core role within care, makes it

essential to recognize their experiences of palliative cancer care. This study shows that

working within cancer care in Uganda means working with limited resources. In order to get

more resources allocated to cancer care these limitations must be acknowledged. It is

something that the students hope this study can contribute to. The students are aware that the

solution to the challenging situation exists on a wider level, but nonetheless this study and

others like it do hope to contribute to the improvements so clearly desired by those providing

palliative cancer care in Uganda. The result will be shared with the UCI and therefore they

have the possibility to gain insight as to what nurses working there are thinking. Furthermore,

the study will be shared through Karolinska Institutet, making it available for both staff and

fellow nursing students. For Swedish nurses and nursing students this study gives the

opportunity to broaden the perspectives on health care in a low-income country, and this is

valuable since it stands in contrast to health care in Sweden and also because they someday

might want to go and work abroad. In practicing nursing this study could increase the nurses

understanding for patients from countries such as Uganda. The study will also be available

15

through SIDA on their website, so that students who have been granted minor field study

scholarships can read it, and might be inspired to undertake research within similar areas.

6.4 Conclusion

This study reveals that the cancer care in Uganda is being faced to deal with challenges. The

prevalence of cancer is on the increase in Uganda and the result indicates this to be partly due

to increased awareness of the illness among the Ugandan population. This new awareness

could lead to more cancer sufferers seeking health care and being treated at earlier stages, a

development in the right direction. However, the nursing staff patient ratio is currently under

pressure and perhaps does not have the possibility to provide sufficient care and treatment

with swelling cancer patient demand. Indeed caregivers are relied upon in the provision of

care for the patients and the nurses depend on them to make the care as acceptable as possible.

Although the contribution by the caregivers have become a resource for the nurses, previous

research shows that caregivers experience emotional and financial burdens which should be

considered.

The patients who receive cancer treatment are often admitted during the later stages of their

illness and therefore the care becomes palliative, and nursing interventions at this stage is

foremost to ease the patients suffering. Easing the suffering is primarily done by managing

the pain and patient interaction. These interventions can be seen as basic in the cancer care

setting, however the students reflect they are essential in general nursing care.

The government is underfunding cancer care and therefore necessary resources are missing. It

is stated in the NHP II (MOH, 2010) that the government is obliged to provide all people with

health care, but in reality this appears not to be happening. Patients are in many cases poor

and are not able to afford the cost of drugs, or hospital transport, while having to maintain a

household which is quite often the case. These financial difficulties are similar to those

presented in a study of cancer patients in Tanzania. Without drugs, blood products and

oxygen it becomes difficult to treat patients to the desired extent, and it so happens patients

die almost by default. The sense of helplessness experienced by not being able to administer

fully to the needs of patients due to lack of resources appears to be a burden to nurses and

presumably other health care staff. The students reflect that these emotional experiences are

concerning and should be researched further.

This study is an attempt to give insight into the field of cancer care in Uganda. Improvements

need to happen, this could be speeded up by a substantial financial injection to raise the

standard of cancer care, and to support nurses in providing qualitative cancer interventions.

Declaration of independence

Writer Karoline Ekblad and writer Sara Dorrian have equally contributed in all parts of this

bachelor thesis.

16

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Appendix 1

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Appendix 2

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