Living with AIDS in Uganda: a qualitative

study of patients’ and families’ experiences

following referral to hospice

Wesley Too​1*​, Michael Watson​2​, Richard Harding​3 ​and Jane Seymour​2
Abstract
Background: Globally, the majority of people with HIV/AIDS live in sub-Saharan Africa. While the
increasing availability of antiretroviral therapy is improving the outlook for many, its effects are yet to
reach all of those in need and patients still present with advanced disease. This paper reports findings
from qualitative interviews with patients living with AIDS and their caregivers who were receiving palliative
care from Hospice Africa Uganda (HAU). We aimed to understand what motivated patients and their
families to seek formal healthcare, whether there were any barriers to help- seeking and how the help and
support provided to them by HAU was perceived. Methods: We invited patients with AIDS and their
relatives who were newly referred to HAU to participate in qualitative interviews. Patients and carers were
interviewed in their homes approximately four weeks after the patient’s enrolment at HAU. Interviews
were translated, transcribed and analysed using narrative and thematic approaches. Results: Interviews
were completed with 22 patients (10 women and 12 men) and 20 family caregivers, nominated by
patients. Interviews revealed the extent of suffering patients endured and the strain that family caregivers
experienced before help was sought or accessed. Patients reported a wide range of severe physical
symptoms. Patients and their relatives reported worries about the disclosure of the AIDS diagnosis and
fear of stigma. Profound poverty framed all accounts. Poverty and stigma were, depending on the patient
and family situation, both motivators and barriers to help seeking behaviour. Hospice services were
perceived to provide essential relief of pain and symptoms, as well as providing rehabilitative support and
a sense of caring. The hospice was perceived relieve utter destitution, although it was unable to meet all
the expectations that patients had. Conclusion: Hospice care was highly valued and perceived to
effectively manage problems such as pain and other symptoms and to provide rehabilitation. Participants
noted a strong sense of being “cared for”. However, poverty and a sense of stigma were widespread.
Further research is needed to understand how poverty and stigma can be effectively managed in hospice
care for patients for advanced AIDS and their families.
Keywords: Palliative care, HIV/AIDS, Africa, Hospice, Qualitative, Stigma, Poverty
Background ​Two-thirds of the approximately 40 million people living with HIV/AIDS worldwide live in
sub-Saharan Africa [1] where health resources are limited and existing health services struggle to provide even the
most basic health care. While the increasing availability of HAART in Sub Saharan Africa is improving the outlook for
many people
infected with HIV, its effects are yet to reach many of those in need and many patients still present with ad- vanced
disease [2]. Recent evidence suggests that prob- lems persist alongside HAART and that palliative care is still required
[3]. Quantitative studies of patients with AIDS under hospice care in East Africa have reported a high prevalence of
pain, symptoms and psychological distress [4], spiritual distress [5], and poor quality of life
* Correspondence: ​[email protected] ​1​Kabarak University, School of Medicine and Health Sciences, P O Private Bag-20157
​ Kabarak,
Nakuru, Kenya
 [6]. Qualitative data have revealed needs for communica- tion and information [7]. Although poverty is a funda-
mental underlying problem [4], the social needs of ​Full list of author information is available at the end of the article
Too ​et al. BMC Palliative Care ​(2015) 14:67 DOI 10.1186/s12904-015-0066-3

RESEARCH ARTICLE Open Access

© 2015 Too et al. Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License
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article, unless otherwise stated.
viewed in their homes. The study was conducted in the capital
people living with the highly stigmatised diagnosis of AIDS city of Uganda, Kampala, and its environs.
who are accessing palliative care in Africa are not well HAU is the model hospice for Hospice Africa, founded in
understood. Over the last decade or so the World Health 1992. It seeks to provide affordable and culturally ap- propriate
Organisation African initiative has recommended that the best palliative care for patients with cancer and / or HIV/AIDS.
way to manage the care of patients with HIV/ AIDS is to There are now three hospices in Uganda, under an umbrella
provide palliative care alongside efforts to provide active organization based in Kampala from which we recruited
treatment and prevent disease progres- sion [5]. Therefore, patients. The model of service in- volves out-patient care and
understanding ​“​total care needs​” ​is essential for palliative care home-based care within a defined operational area. HAU works
provision in the context of AIDS hospice care in poor contexts. closely with local hospitals and other health care facilities to
Uganda was the first country in sub Saharan Africa to accept
designate palliative care as an essential clinical service and toreferrals of patients suffering from pain and symptoms.
st
include palliative care both in the government​’​s StrategicHowever, the main source of referral is self-referral. By 31​
Health Plan and its HIV/AIDS National Stra- tegic FrameworkMarch 2014, HAU had provided support to 23, 653 patients
[6]. An estimated 1.2 million people in Uganda are living withsince its inception [12].
HIV/AIDS, with 64,000 AIDS- related deaths in 2009 [7]. A
survey of palliative care needs in Uganda has shown thatParticipants ​Over a period of six weeks in 2009, patients with
patients​’ ​and families​’ ​needs span three main areas: the relief ofstage III and IV HIV who were newly referred to HAU were
pain and other symptoms, counselling and basic financialinvited to participate in the study. To be eligible for study
support in- cluding food aid [8]. Many patients and families areinclusion, patients had to be at least 18 years old, living within
caught in a ​‘​medical poverty trap​’ ​[9] that is characteris- tic ofsix miles of HAU, and able to communicate in either English
the situation of most people affected by serious and terminalor Luganda. Patients were invited to nominate family
illness sub Saharan Africa. This means that it is essential thatmember(s) closely involved in their care, so that these
palliative care providers attend to pov- erty as well as toindividuals could also be invited to take part in the study.
clinical care [2, 10].
This paper reports findings from qualitative interviewsRecruitment procedure ​An information poster was displayed
with patients living with AIDS and their caregivers who werein the waiting area of HAU to facilitate patients​’ ​general
receiving palliative care from Hospice Africa Uganda (HAU).understanding of the project. Hospice staff identified potential
We aimed to understand what moti- vated patients and theirparticipants when they enrolled at the service and, with the
families to seek formal health- care, whether there were anypatient​’​s permission, referred them to the study researcher
barriers to help- seeking and how the help and support provided(WT) who provided then with verbal and written information.
to them by HAU was perceived in relation to their total careWritten consent was then gained for WT to visit the pa- tient at
needs. home, alongside the hospice outreach team. Sep- arate consent
was gained at the time of the home visit for the conduct of an
Methods ​Design ​Cross sectional qualitative interviews were interview. Family caregivers were similarly given information
conducted with patients with AIDS and their nominated family about the study, with pa- tients asked to pass on a letter of
carers as part of a larger mixed methods study [11]. invitation where this was required. Where nominated family
members were in attendance at the time of the patient​’​s referral
Setting ​Patients and their carers attending HAU were inter- to the hospice, they were invited to participate in the study
directly. have HIV/AIDS ​ ​What made them seek medical
help ​ ​Their experiences of the palliative care services
Data collection ​Interviews took place approximately 4 weeks received from HAU ​ ​Their experiences of giving
after the patient​’​s enrolment at HAU. Patients and carers were and receiving care and the difficulties and challenges they
interviewed together or singly, depending on their choice. encountered.
Patients without a family carer were interviewed alone. An
interview guide was designed in the light of existing literature. Interviews lasted between 25 and 45 min. They were
The guide sought to enable patients and/ or their caregivers to digitally-recorded. A bilingual assistant acted as a trans- lator
reflect on: and also interpreter.

​Their experiences from when they first noticed they

Too ​et al. BMC Palliative Care ​(2015) 14:67 Page 2 of 7
help. However extreme poverty and worries about the financial
Analysis ​Where necessary, interviews were translated verbatim implications of accessing medical care meant that most pa-
into English with the help of the bi-lingual assistant. Narrative tients only sought this at a very late stage of their disease:
summaries of each interview were written up to understand the
context and content of each person​’​s or dyad​’​s experience and We are struggling with many needs so we gamble our way
how their story evolved over time. This was followed by to hospital​...​To move to get treatment is a problem. Body
thematic analysis to compare experiences across all also is weak and this part (pointing at body) is painful and
interviewees and identify com- monalities [13]. The analysis I still cough (Participant F)
was undertaken by WT without the use of a software package.
Now I don​’​t have any money​...​just borrowing.​ ..​not
Ethical committee review ​The study received ethical improving​...​feel a lot of pain. I feel like stealing money to
committee approval from the Ugandan National Commission pay for drugs.​ ..​I wish I could die. (Participant E)
for Science and Tech- nology (UNCST HS-508) and from
HAU. The study proposal also received a positive review by Some patients described first going to informal health
the Research Ethics Committee in the Faculty of Medicine and care before eventually seeking help from more formal
Health Sciences, at the University of Nottingham [14] . Writtensector. For example, the newly expanding availability of
consent was obtained for participants to be interviewed. Chinese health care featured in some of the interviews; in
Anonymity and confidentiality issues were addressed in- others, reference was made to advice received from traditional
cluding use of pseudonyms names for participants. African witchdoctors:

Results ​Thirty-six patients were invited to participate in the So I went to a Chinese clinic ​...​that is where I was buying
study, of whom 30 agreed to a home visit for the purpose of that drug from which was very expensive but it didn​’​t help
undertaking an interview. Those who participated were very me​...​..I experienced skin problems that were not
seriously or terminally ill. Many were bedridden and eight of disappearing and I went to Dr. X​’​s clinic (a private
patients died before being able to participate in an interview. oncologist). I also went to the Infectious Disease Institute to
Thus, 22 patients (10 female and 12 male) were interviewed. get HAART which has helped me to live and now [the]
Participants​’ ​age ranged from 18 to 60 years. Twenty family hospice doctor. (Participant E)
caregivers were nominated by patients to participate in the
study and took part in joint interviews with the patient who I have gone to a witchdoctor ​...​it was my daughters who
nominated them. Socio-demographic and clinical profile of took me there and the witchdoctor would give us a pounded
participants are described in Table 1. form of herbal medicines​...​with instructions to boil then and
What prompted patients to seek help? give me plenty to drink of it. (Participant D)

Physical needs ​Patients described persistent and troublesome Others resorted to drastic ​‘​self-help​’ ​measures before
symptoms as the main impetus behind their decision to seek seeking medical help. For example, participant C with Kaposi​’​s
sarcoma reported how he had begun to try to cut the ​‘​blister​’ badly, and I said ‘​ ​Oh God, why am I breathing so badly’​ ​?
from his arm when his neighbours and friends started to avoid (Participant B)
him:
Just weakness and pain​... ​the weakness is worrying her
People began fearing me when the wound opened up and more because there are some things she would like to do on
the flesh started coming out​...​I did not know what to do with her own, naturally she is very hard working. (Daughter,
it, so I began to chop off the blistering growth in my arm. caring for participant A).
(Participant C)
Psychosocial and emotional distress ​As well as urgent
Patients were often almost completely incapacitated physical needs, distress caused by the psychosocial and
before any formal health care was sought. Overwhelm- ingly emotional consequences of living with HIV/AIDS frequently
severe pain, fatigue, cough and dyspnea were com- mon lay behind patients​’ ​and carers​’ ​decisions to seek help and to
experiences: eventually accept referral to hospice care. The strains of family
care- giving and the intersection of emotional distress with
The wounds in the feet are disturbing me. By the time I got poverty were particularly important. While poverty sometimes
off the bed I had some little strength but I was breathing acted as a brake on help seeking behavior
Too ​et al. BMC Palliative Care ​(2015) 14:67 Page 3 of 7
 they would disclose their status to lever access this support,
which sometimes in turn enabled help to be sought from formal
health care channels. In contrast, where participants felt that
either there was no possibility of support or that disclosure
would damage their relation- ships with others and undermine
any help that they may already be receiving, they kept their
diagnosis a secret. For example participant H, describes her
selective disclosure to one relative but not to others, for fear of
being discrimi- nated against:
Semi-urban 6 27.4

Rural 8 36.3

Clinical characteristics Stage III 5 22.7

Stage IV 17 77.3

Presence of co-morbidity AIDS related cancers 18 81.8

Opportunistic
infections

Receiving Highly Active

Antiretroviral Therapy (HAART)

You know I take care of him but I have my family and

because of worries about additional financial burdens, the children also to take care of. It is not easy but we try. I
difficulties of providing family care in a situation where know I will have to take care of his children and mine at
competing obligations became impossible to manage often the same time in school [meaning currently and when the
prompted a search for help on behalf of the patient by their patient dies]. I count like I have two families to take care.
close family members: It is money draining but what can you do? Now he has no
Stigma ​Concerns about stigma were especially evident in the energy/strength; he used to be truck driver. (A family
ac- counts of 15 patients and their family carers: they reported caregiver, caring for his brother participant E).
reluctance to disclose their disease status because of fears of Where I used to stay at my auntie​’​s place- I didn’​ ​t tell
losing: job security, their friends and any help that family and anyone of my status. The only person who knew was my
friends were currently providing. Patients weighed a number of brother. Where l live now at my brother’​ s​ house they know
issues before disclosing, including where they were living and because they love me and no one discriminates (against)
who surrounded them. Where patients an- ticipated that they me; they treat me like any other family member (Participant
would receive sympathetic support from relatives or friends, H)
 come a reality, this prompted a search for alternative
In some cases where fears of stigmatisation had be-
Too ​et al. BMC Palliative Care ​(2015) 14:67 Page 4 of 7
a key barrier to help-seeking.
Age <20 1 4.5

You see we are struggling.​ ..​the patient is lying there on the

mat, no money for medication for the leg, no food, no drink;
we are just there. (Participant G)

Many family carers provided care in the context where

they themselves were also ill or worried about their sta- tus: 11
patients also had carers who had HIV/ AIDS at various stages.
Carers​’ ​and patients​’ ​worries about each other​’​s health and what
would happen in the future were aggravated by a lack of access
to the most basic resources:
Table 1 ​Socio-demographic characteristics and other clinical Marital status Never married/single 8 36.4

profile of participants ​Socio-demographics characteristics Married 12 54.5

​ 22 %
[Baseline] ​N =
Divorced/ widowed 2 9.1

Care setting of participants Home care 11 50.1

21–30 4 18.2
Out-patient 8 13.6
31–40 6 27.3
In-patient 3 36.3
41–50 10 45.5
Residence status Urban 8 36.3
>51 1 4.5

Gender Male 12 54.5 forms of help out of sheer necessity and because of
Female 10 45.5 abandonment:

You see I am like this: she has diarrhoea, sometimes her When people at home discovered that participant F has
clothes are soaking wet and I need to clean, I need gloves.​ ..​I HIV/AIDS and cancer they left us and abandoned us, so we
don​’​t even know if I have contracted [it], you see I don​’​t learnt to be on our own​...​.Now [our] money is over and we
know my status. (Daughter-in-law of participant D) are now walking in the Kampala Street, hoping to get
Carer’s gender Male 3 13.6 someone to help us. If we get a ‘​ g​ ood Samaritan’​ ​we will
Female 19 86.4 thank God (Wife of Participant F)
Carer’s relationship Spouse 8 36.8
I did not want people to see me​...​Even people at home
Family member
started to isolate me.​ .. ​you find they say don​’​t use our basin,
(sibling or relative)
4 63.6 don​’​t use our cup​... ​use your own cup​... ​get your own plate
4 63.6 ...​.I used to work in an hotel and she (boss) feared that I
would stick to her in the final stages of my disease so she
kicked me off the hotel (Participant I)
What barriers were there to help seeking? ​We have
already alluded above to the dual role that poverty played in In one case included in this study a comparatively young
hindering and facilitating help seeking behaviour. Stigma was widow aged 39, had been abandoned by her husband​’​s family
another key factor that played an important but complex role in because of fears of contagion and had to return to her parental
relation to help seeking behaviour, acting both as a prompt and home. However, on her return, her immedi- ate family
struggled to care for her and she was put into an old, abandoned
 building where the only person in at- tendance was a young no longer smelling (Participant L)
child. The child looked depressed and tired and was unable to
attend school because of the duties thrust upon her. Participant I used to have .​ .. ​what I can I say it makes your face ​...
B eventually accessed help from the hospice but died seven depressed ​... ​like fear ​... ​but now I’​ ​m feeling better. You see,
weeks after her re- ferral, having been admitted to hospital like now in the morning, I woke up and I had nothing to do
from home for emergency intervention for dyspnoea. ... ​then I was trying to make a table in the workshop [place
of employment] ​... ​Even when I go back to Kabale ​... ​I can
Experiences of services from Hospice Africa dig ​... ​as you have found me working in the workshop and
Uganda ​All the patients who were interviewed described even go back to school. (Participant M)
some form of positive impact from accessing hospice services.
Immediate benefits included control of severe pain and other In some situations, participants reported that they had
symptoms, with subsidiary benefits reported as re- lief ofreceived support prior to their referral to HAU from several
loneliness and a sense of being cared for. A con- trast betweenAIDS agencies that offered specialised services, but often at a
hospice care and hospital care was sometimes drawn bycost. Patients were therefore particularly grateful for the free
patients: services they were offered at HAU. For instance, Participant N
described how he was able to access morphine at no cost to
The wound [a fungating Kaposi​’​s sarcoma] was so painful, himself when he was re- ferred to HAU:
but now it is only ‘​ ​paralysed​’ ​but not [so] painful. I used to
experience lots of pain and did not have specialised care, I will tell you the situation I am in because before I was in a
but now I get visited like now you have come [to my] home. very bad situation but now I see a difference​...​.In this
I am always lonely since my daughter is married and I am illness, without telling lies, from the time I started going to
alone here (Participant J) the Infectious Disease Institute, I have not bought any
medication [HAART].. I like hospice also for giving me the
Even with all these drugs (showing them to the researcher) morphine for which I also don​’t​ pay (Participant N)
they have been giving me .​ ..​the symptoms were not going.
But since I came here and was given some treatment there is While most of the patients reported improvement in
some improvement and I don​’​t have diarrhoea so their physical condition when they enrolled for hospice care
much.​ ..​you, the hospice, when I come to you, you take care services, some perceived that in addition, HAU had helped
of me and you give me some assistance. Because some them address their needs for subsistence. How- ever, the
hospitals you go to, no- hospice was limited in what it could provide meaning that
one takes care of you and your illness gets worse (Par-
patients​’ ​expectations could not always be met:​Last time you
ticipant K)
came you gave me some sugar and now it
​ is finished and you
Longer term rehabilitative impacts were also reported; know now I am not working and I am not leaving the house. I
these involved reactivation of social interaction or in some have backache and I have nowhere to get it. (Participant O)
cases resumption of employment or schooling.
Some lived in hopes that the hospice would address all
There has been a big improvement, even people notice ​... ​I their needs, including provision of school fees for their
am able to interact with people now and move around. I children:
can wear shoes.​ ..​I feel good about myself now, since I am
Too ​et al. BMC Palliative Care ​(2015) 14:67 Page 5 of 7
have money to take him to school (Participant P)
‘​Though I may want to work, I don​’t​ have help. Any work I
can do, for instance, before I was dealing in buying and Discussion ​This study explored the experiences of patients
selling of bananas but now there is no money. I want the living with AIDS who were newly referred Hospice Africa
hospice to assist my child, especially with school fees, Uganda and their caregivers. Qualitative interviews re- vealed
because the father died and the child has no help. I don​’​t the extent of suffering patients endured and the strain that
 family caregivers experienced before help was sought or and perceived effectively manage problems such as pain and
accessed, and how poverty and stigma were, depending on the other symptoms and to provide rehabilitation. How- ever,
patient and family situation, both mo- tivators and barriers to
poverty and a sense of stigma were widespread. Further
help seeking behaviour. research is needed to understand how poverty and stigma can
There are a number of limitations to the study conclu-be effectively managed in hospice care for patients for
sions. Our study involved a small sample of participants whoadvanced AIDS and their families.
were either self-referred or were referred by others to HAU.
Competing interests The authors declare that they have no
Caution should therefore be taken when con- sidering thecompeting interests.
transferability of the findings. We relied on the HAU outreach
team to identify and access patients​’ ​homes and, as such, theAuthors’ contributions WT had the major input into the design, analysis
and interpretation of the data. WT carried out the data collection. MW, RH
researcher was looked upon by patients and their families asand JS contributed as PhD supervisors to the design, analysis and
part of the home-visiting team. This may have introduced biasnterpretation. All authors read and approved the final manuscript
in the manner that participants spoke about their situation and
may have deterred them from making any critical comments.Acknowledgement We are very grateful for the participation of patients
and their family members. We also wish to thank Hospice Africa
An alternative approach may have been to return to inter- viewUganda for their support towards data collection. The University of
participants without the hospice outreach team but this wasNottingham provided research funds which supported this study.
impractical for reasons of travel costs and trans- lator
availability. Author details ​1​Kabarak University, School of Medicine and Health

Our findings on the role of stigma in the lives of patientsSciences, P O Private Bag-20157
​ Kabarak, Nakuru, Kenya. 2​​ School of
with AIDS resonate with a range of research undertaken inHealth Sciences, University of Nottingham, Queen’s Medical Centre,
3​
Uganda and other African countries [3, 13, 15], and particularlyDerby Road, Nottingham NG7 2UH, UK. ​ The Cicely Saunders Institute,
Bessemer Road, Kings College, London SE5 9PJ, UK.
draw attention to the need for further research which examines
the relationships between stigma, pa- tients​’ ​and families​Received:
’ 16 January 2015 Accepted: 25 November 2015
degree of emotional distress and their perceptions of, and
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