Hospice Africa Uganda Research Articles

Insights into Advance Care Planning in Africa

Advance Care Planning is an important element of palliative care whose relevance has over the years shifted from focusing on patients at end of life to being applicable at any stage of an individual’s health. It is said to be beneficial not only to the patient but also to the general health care system. It may facilitate a peaceful death in addition to minimizing unnecessary costs and the use of resources yet its use among health care workers in Africa is not well researched.This study therefore aimed to explore the use of Advance Care Planning among health care providers in sub-Saharan Africa. It was a survey that targeted health care professionals across Sub-Saharan Africa who were either current staff or alumni of Hospice Africa Uganda (HAU) between 2012 and 2023. These were conveniently sampled from HAU data base. An electronic survey was sent out, data was collected into an excel sheet and it was analysed descriptively.Responses to the survey came from nine out of 37 countries with PC services across Africa and there was a 14% response rate. 83% of the respondents had insight into Advance Care Planning and a surprise finding was that 40% had cared for patients with ACP. The majority (96%) would respect Advance Care Plans of their patients. These findings gave some insights into the use of ACP although the results cannot be generalised to a wider demography of healthcare providers.

The socioeconomic burden of a diagnosis of cervical cancer in women in rural Uganda: findings from a descriptive qualitative study.

The aim of the study was to diagnose the socioeconomic burden and impact of a diagnosis of cervical cancer in rural women in the context of a low-resourced country, Uganda, through a descriptive qualitative enquiry. This was a multi-site descriptive qualitative inquiry, conducted at three hospice settings; Mobile Hospice Mbarara in the Southwest, Little Hospice Hoima in Midwest, and Hospice Africa Uganda Kampala in Central Uganda. A purposive sample of women with a histologically confirmed diagnosis of cervical cancer were recruited. Data were collected using open-ended audio-recorded interviews conducted in the native languages of the participants. Interviews were transcribed verbatim in English. Braun and Clarke's (2019) framework of thematic analysis was used. A total of 13 women, with mean age 49.2 years (range 29-71), participated in the study. All participants were of low socioeconomic status. The majority (84.6%) had advanced disease at diagnosis. A detailed reading of transcripts produced three major themes: (1) the impact of cervical cancer on women's relationships (2) the disrupted and impaired activities of daily living (ADLs), and (3) economic disruptions. A diagnosis of cervical cancer introduces significant socioeconomic disruptions in a woman's and her family's life. Cervical cancer causes disability, impairs the woman and her family's productivity and exacerbates levels of poverty in the home. High and expensive out-of-pocket expenditure on investigations, treatments and transport costs further compound the socioeconomic burden.

Cross Cultural Adaptation and Cognitive Testing of a Psycho-Social-Spiritual Healing Measure, the NIH Healing Experiences in All Life Stressors-NIH-HEALS.

BackgroundCancer is associated with trauma and stress which impacts the physical, psychological, and spiritual/existential well-being of patients. Psychological/behavioral healing may help alleviate this distress and the associated health-related suffering. Psycho-Social-Spiritual healing outcome measures are thus needed to stimulate service development. The NIH Healing Experiences in All Life Stressors (NIH-HEALS), is a novel 35-item measure of psycho-social-spiritual healing, developed in USA and is yet to be validated and adapted for use in African countries.ObjectivesThis study aimed to assess the face and content validity of the NIH-HEALS in the population of cancer patients in Uganda and to culturally adapt this measure.MethodsCross-sectional study using cognitive interviewing alongside standard piloting. We recruited adult (18 years and above) patients with advanced cancer from Hospice Africa Uganda. Interviews were conducted in two phases, using the think aloud technique and concurrent probing and were audio recorded. Phase 1 was used to identify initial concerns around clarity of the statements, and phase 2 further explored whether the issues of clarity had been addressed, alongside the standard cognitive interview parameters. The transcripts were imported into NVivo-12 analyzed using the content analysis technique and categorized using Tourengeau’s information processing model.ResultsWe recruited thirty-five (35) patients: phase one (n = 5) two (n = 30). The median completion time was 20 minutes. Problems identified included comprehension of some statements, words, and phrases, suggestions to include local examples, highlighting of potentially sensitive statements that lean towards difficult conversations, and some cultural differences in the construction of the “Trust and Acceptance” construct, our sample showed less emphasis on family/friend relations. This feedback was used to adapt the NIH-HEALS for the local context.ConclusionThe NIH-HEALS has sufficient face and content validity properties to be used among palliative cancer patients in Uganda. We propose some changes to inform the adaptation of this measure for the local context.

The Psychosocial and Economic Effects of Caring for Terminally Ill Patients: The Case of Hospice Africa Uganda

Introduction Giving care to a patient at the end-of-life can be a challenging experience. The responsibilities of caregiving may include executing complex physical and mental tasks, financial planning, patient care, decision-making, emotional support and coordination of care. This mixed-methods observational study aims to identify the psychosocial and economic effects of caregiving for terminally-ill patients by carers on the Hospice Africa Uganda Kampala program. It used both quantitative and qualitative data of caregivers caring for terminally-ill patients attending Hospice Africa Uganda Kampala. Simple random sampling was conducted to select caregivers who were invited to participate in the study. Results Results indicate that the majority of patients who were receiving palliative care (60.9%, 103) had been diagnosed with cancer. Most participants (62%, n=105) had spent less than one year caring for their patients, while (18%, n=31) were cared for between 1-5 years. Our results show that the responsibility of caregiving has significant effects on the psychosocial well-being of caretakers. In particular, it reduced the amount of time they spent attending social gatherings and caring for their children, their religious commitment (p<0.05), as well as their level of fatigue and exhaustion (p<0.05), and negatively impacted job finding activities. Conclusion Terminal caregiving has significant effects on the psychosocial well-being and incomes of caretakers, and their ability to find a job alongside caring for the patient. Based on these findings, it is therefore recommended that caregivers be given ongoing support to help them provide care to their own family members and patients with life limiting illnesses early in the disease trajectory.

Prevalence and factors associated with depressive symptoms among family caregivers of palliative care patients at Hospice Africa Uganda.

This study aimed to establish the prevalence and factors associated with depressive symptoms among family caregivers of palliative care patients at Hospice Africa Uganda. We used a mixed method study to determine the prevalence and factors associated with depressive symptoms among family caregivers of palliative care patients at Hospice Africa Uganda. We assessed depressive symptoms using the Patient Health Questionnaire-9 (PHQ-9) and collected socio-demographic data using a tailored questionnaire. We used binary logistic regression to assess for the association between depressive symptomatology and caregiver socio-demographic and clinical characteristics. We recruited 161 family caregivers, 64% of whom were female. The study revealed a high prevalence of depressive symptoms (46%) (n = 74) among the family caregivers. Education status and religious affiliation were significantly associated with depressive symptomatology. Family caregivers of palliative care patients face a high burden of depressive symptoms. Efforts to care for family caregivers within palliative care should include assessment and management of depressive symptoms in this population.

A Regional Palliative Care Entity Working With a Host Government to Facilitate Exchange Visits From Across Africa to Improve Access to Controlled Medicines for Cancer Patients

Background and context: The African Palliative Care Association (APCA) is a pan-African palliative care organization hosted in Uganda but supporting initiatives to integrate palliative care into national health systems across Africa. Uganda hosts one of the oldest cancer units in Africa and also reconstitutes its own oral liquid morphine to reduce barriers and cost of access to pain control for patients. Aim: The aim of this effort is to expose government officials and other NGOs from other African countries to best practices in oral morphine manufacture, distribution and access to controlled medicines for pain control in cancer and other conditions with a view to benchmark and establish similar or better systems. Strategy/Tactics: APCA working with its funders in consultation with the Ugandan Ministry of Health and Hospice Africa Uganda, facilitates other African ministries of health delegations to conduct study visits in Uganda to benchmark the oral morphine reconstitution, the supply chain mechanisms for its distribution to patients in both public and private hospitals and at home. Program/Policy process: APCA identifies countries with morphine access challenges and makes arrangements for key personnel in those countries in ministries of health, medicines control authority, central medicines stores and national palliative care associations where they exist to spend a study period in Uganda. While in Uganda, the delegations visit the oral morphine manufacturing facility, Hospice Africa Uganda, the Ministry of Health, national medical stores, National Drug Authority, joint medical stores and some of the palliative care providers and training facilities. Once the period with the various stakeholders in the country is completed, the visiting teams draw up plans for implementation and identify required technical assistance from APCA. The costing and sources of funding are identified including contribution from the government in need and then activities are implemented. Outcomes: As a result of this South-to-South approach, Uganda has hosted delegations from 14 African countries. At one instance, it involved the Minister Of Health from Swaziland heading a delegation to Uganda while others sent other high level delegates to the peer learning and bench marking. All these countries have taken steps to establish access to oral liquid morphine as well as policy and capacity building activities for their staff. Some of the countries like Malawi and Swaziland are already having morphine reconstitution and national palliative care policies while others such as Rwanda and Botswana are in the process of changing to the same system. Cancer and palliative care related activities are also being implemented in some of countries. Some countries have graduated to host others like Uganda does. What was learned: The South-to-South learning and bench marking visits are very practical in Africa and have triggered palliative care initiatives at national level.

P-001 - Factors influencing late presentation for health care among men with cancer esophagus attending Hospice Africa Uganda (HAU)

Introduction: Late presentation for health care among patients with Cancer Esophagus is a major problem in Uganda. Cancer of Esophagus is one of the curable cancers if caught in its early stages. World Health Organization (2010) reports that esophageal cancer is the second most common cancer among men and was responsible for over 25000 deaths in 2010, approximately 80% occurred in developing countries. It was projected that it will increase by 25% over the next 10 years if nothing is done like putting prevention measures of adequate screening and treatment into place. Methods: A recording tape was used to store all the discussions for flexibility. The recorded material was first transcribed from local language then translated into English. Different themes were identified and then coding was done to come up with clear relations to the topic. Results: The results were also presented to Hospice Africa Uganda and Mbarara regional referral hospital management for proper planning. The 60% of the patient had no transport neither finicial support to access or report at the health facilities. The 40% of these patient had financial support but did not have time to visit the health workers. Conclusion: In conclusion, the themes realized which contributed to the late presentation for health care, could be grouped under three main factors: Socio-economic factors, Health system factors and Patient and community factors. These factors are interdependent. These need to be addressed by the responsible personnel in order to realize a change for the better in the health seeking mannerisms of patients.

Perspective on Care at the End of Life at Hospice Africa Uganda.

Since its beginning in 1993, Hospice Africa Uganda (HAU) has become a leader in palliative care in Africa. Despite this, there remains a sparsity of research elucidating the priorities of patients in their care at the end of life. This study aimed to identify those priorities in three groups: patients with life-limiting illness, their caregivers, and their healthcare providers at HAU, and thus to identify differences in what these groups find important in the last month of life. A Likert scale survey of 31 statements regarding end-of-life care was administered to 46 patients, 51 caregivers, and 25 healthcare providers at HAU in Kampala, Uganda and satellite locations. Variations in the responses of the groups were analyzed using the Kruskal-Wallis test of variance. Twelve of 31 items were significantly different, and frequency data were examined. Differences were found in categories of symptom management, future planning, and in preferred place of death. Of anxiety, pain, and shortness of breath (SOB), only control of SOB was widely agreed on as important by patients, although providers unanimously wanted to control symptoms. Many subjects in all groups found that funeral arrangements should be deferred. Most patients and caregivers felt as if dying in the hospital was preferable, whereas providers felt that home care was preferable. This study tells us that patients, caregivers, and healthcare providers often have different ideas concerning what is important in end-of-life care, differences that are unique to this population.

471P - Factors influencing late presentation for treatment, palliative care services among cancer patients attending Hospice Africa Uganda (HAU)

471P - Factors influencing late presentation for treatment, palliative care services among cancer patients attending Hospice Africa Uganda (HAU)

Cancer and palliative care in Africa.

Cancer and palliative care in Africa.

Spiritual Distress Screening Using the Novel “Spirit 3” at Hospice Africa Uganda

Abstract 3 Background: At Hospice Africa Uganda (HAU), patients' spiritual well-being is assessed in depth upon admission, but there are no rigorous assessment tools for regular spiritual distress screening in this setting. Our prior research demonstrated the “Spirit 8” assessment too cumbersome for routine use by HAU staff. The new “Spirit 3” includes three core questions thought to be most clinically relevant. The aims are to assess the feasibility of the Spirit 3 in routine screening for spiritual distress in hospice and to understand whether HAU staff value using the Spirit 3 in routine clinical practice. Methods: Between June 2014 and February 2015, the Spirit 3 was administered to consenting patients for four consecutive visits. The scale ranges from 3 to 15 with 15 representing an ideal state of spiritual well-being. For any patient unable to complete all assessments, a reason was recorded. Any staff intervention performed was recorded. Results: 49 patients were enrolled in the study and completed the first assessment. 41 (84%) of those patients had untreatable, metastatic cancer and 8 (16%) had HIV/AIDS. Twenty patients (41%) completed the second assessment; 11 the third (23%); and 8 patients (16%) completed all 4 assessments. There were no partially completed assessments. Eight patients died prior to the second assessment; the remainder were missed by research staff during clinical care and thus lost to follow-up. At 86% of visits, a staff member performed an intervention to address the reported spiritual distress. Upon study completion, 75% of the HAU staff wished to use the Spirit 3 in routine clinical care. Conclusion: Almost half of living patients completed the second assessment (49%). Attrition was due to difficulty in flagging charts rather than any barriers in acceptance by patients or staff. The majority of HAU staff wished to continue using the Spirit 3 suggesting feasibility in clinical practice. AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST: No COIs from the authors.

Living with AIDS in Uganda: a qualitative study of patients' and families' experiences following referral to hospice.

BackgroundGlobally, 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.MethodsWe 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.ResultsInterviews 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.ConclusionHospice 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.

A pilot study screening for spiritual distress in patients at Hospice Africa Uganda

Background: Hospice Africa Uganda (HAU) is a nongovernmental organization that has been a pioneer in African palliative care since 1993. As standard of care at HAU, a patient’s spiritual well-being is assessed thoroughly upon admission, but not screened routinely at subsequent visits due to heavy clinical volume and no standardized instrument for spiritual distress. The “Spirit 8” is an eight-question, multiple-choice survey developed by Selman et al. that has shown preliminary utility assessing patients in hospice care in Africa. This study proposed that it would be feasible to use the Spirit 8 as a regular, quantitative screen for spiritual distress in patients cared for by HAU. Structure/Method/Design: Between June 20 and October 21, 2013, the Spirit 8 survey was administered verbally to consenting patients upon admission to HAU. Potential scores range from 8 to 40 with the highest representing the best state of spiritual well-being. Available in English or Luganda, the assessment was repeated at up to four subsequent visits. Based on the interaction, study staff scored patient understanding of the survey on a 5-point scale with 5 representing excellent understanding. Demographic data was collected for each patient. Results (Scientific Abstract)/Collaborative Partners (Programmatic Abstract): At the time of data analysis, 81 patients were enrolled on study and completed the assessment at visit 1. Additionally, 44 completed the assessment at visit 2 and 20 at visit 3. At visit 1, the mean Spirit 8 score was 27.20 ( 6.11) out of 40. Paired t tests were used to compare patient scores over time and within certain demographics. No significant difference was found when comparing scores at visit 1 to scores at the second and third visits. Patients who reported having dependents scored 3.2 points higher on average than patients with no dependents (P 1⁄4 0.024). No statistical difference was noted when comparing patients across different demographics (age, gender, HIV status, ECOG score, pain score). Assessment by the study staff of patients understanding of the survey yielded an average score of 4 ( 0.9) out of 5. Of all the assessments given, 98.1% had all eight questions answered. Summary/Conclusion: The Spirit 8 is a feasible screening tool in clinical practice at HAU. In the 4 months from study initiation to data analysis, more than half of the enrolled patients had completed assessments at multiple visits. The high rate of assessment completion (98.1%) and the study staff’s assessment of patient understanding averaging 4 out of 5, both further suggest that the Spirit 8 is an appropriate screening tool for use at HAU. Patient enrollment to n 1⁄4 100 is ongoing with expected study completion by February 2014.

THE IMPACT OF BEING PART OF A THET LINKS PARTNERSHIP TO DEVELOP A PALLIATIVE CARE DEGREE PROGRAM IN SUB SAHARAN AFRICA

BackgroundIn Sub-Saharan Africa the need for palliative care provision is escalating with rising cancer rates and non-communicable disease burden. The shortage of trained health care professionals has highlighted the need...

Quo vadis palliative care in Africa?

In 1992, Hospice Africa was founded in Liverpool, UK with a vision to support cancer patients in Africa through affordable methods for the control of pain and suffering. In 1993, following a feasibility study in four countries, Uganda was chosen to roll out the initiative. Today, Hospice Africa Uganda is operating with a public health approach by training, up to degree level, health professionals who in their own countries are carrying forward palliative care to all those in need in Africa. Although palliative care provision has progressed greatly in recent years, there is still a need for all health professionals to play a greater part in relieving the suffering of cancer patients in Africa today.

Experience of a trainee in palliative medicine in a resource limited hospital PC setting

IntroductionPalliative Care was introduced to Uganda in 1993, with the development of Hospice Africa Uganda providing a clinical service together with education and research. Palliative medicine Specialist Registrars have been...

Role of community volunteer worker in a resource limited setting

IntroductionCommunity Volunteer workers are important and unique means of reaching vulnerable population and giving basic palliative care at the grassroots community level. While others create awareness about palliative care and...

Revolving scheme/cash round scheme at hospice Africa Uganda

IntroductionHospice Africa Uganda (HAU) was started as a catalyst to encourage the spread of palliative care for cancer patients and later also those with HIV/AIDS to improve their quality of...

Community day care at hospice Africa Uganda

IntroductionPalliative care is an approach that improves quality of life of patients and their families facing problems associated with life threatening illness, through prevention and relief of suffering by means...

‘Me I feel proud in my uniform’: the personal value of being a palliative care community volunteer

BackgroundApprox 27 000 new cases of cancer are reported in Uganda in each year affecting 1.5% of the population. A shortage of Doctors, wide geographical distribution, and poor transport systems...