OpenUCT :: Browsing by Subject "Palliative Medicine"

Browsing by Subject "Palliative Medicine"

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Open Access
A determination of the prevalence of palliative care patients admitted to the Groote Schuur Hospital Emergency Centre and their Presenting Complaints
(2022) Govender, Radha; Krause, René; Szymanski, Patryk
Background: The Emergency Centre is often an entry point to health services and is, therefore, well positioned to identify patients with palliative care needs. It is also the place of care sought by the families of palliative care patients when their loved ones are seriously ill or terminal. It becomes important to understand the numbers of palliative care patients presenting to Emergency Centres and the reasons why they present there, in order to strengthen the care provided to these patients in the Emergency Centre. Objectives: This study aimed to determine the prevalence of palliative care patients in a tertiary academic hospital Medical Emergency Centre, and to establish their presenting complaints. Method: The study was an exploratory and descriptive quantitative study based on a review of folders of admitted patients. Non-random sampling with a convenience sampling method was used. Data collection was carried out from 01-11 August 2019. Folders of patients admitted to the Emergency Centre were reviewed, data was collected onto an excel workbook, and analysed. Data collected included patient demographics, symptoms, diagnoses, reasons for presentation, and previous history of palliative care services. Results: Over the data collection period, 383 patients were admitted to the Emergency Centre. 124 of these patients were found to have palliative care needs. Palliative care prevalence over the measured period in the Emergency Centre was therefore 32.4%. Forty-eight percent (48%) of the palliative care patients were male, 52% were female. The most frequent reasons for admission to the Emergency Centre were pain (14% of patients), shortness of breath (7%), loss of/reduced levels of consciousness (6%), and heart disease (5%). 35% of patients presented during business hours (8am-4pm), 62% presented after hours (4pm- 8am). The most frequent reason for admission after hours was pain (18% of palliative care patients admitted after hours). There were no pain- related reasons for admission during business hours. Shortness of breath and heart disease were the most frequent reasons for admission during business hours – forming 6.8% each of all palliative care related business hour admissions. The most frequent symptoms noted for palliative care patients were pain (32.0%), loss of/reduced level of consciousness (30.6%), shortness of breath (24.2%). The most common palliative care related diagnoses were heart/vascular disease (29,0%), cancer progressive and/or metastatic (26.6%) and neurological disease/stroke (19.4%). The top 3 diagnoses in both females and males were hypertension, heart disease and cancer. The most frequent symptom presented by cancer patients was pain. Hospice services are available in the vast majority (96%) of the suburbs in which the patients reside. Only 5.6% of the palliative care patients had been referred to palliative care services. Conclusion: The Emergency Centre is an important catchment zone for the identification and management of palliative patients. Understanding the expected volume of palliative care patients in an Emergency Centre will allow staff to plan for their special needs. The prevalence of palliative care patients presenting to an Emergency Centre is 32.4%. To better support palliative care patients, it is important to understand why patients with palliative care needs present to an Emergency Centre. Pain, shortness of breath and loss of/reduced levels of consciousness are driving patients to the Emergency Centre. While South Africa has a preliminary level of integration of palliative care services with health services, palliative care services are not available to patients and their families on weekends and after hours. Until this has been remedied and other sources of care are in place, Emergency Centres remain an important site of access to care for distressed patients. This therefore requires that a palliative care approach be followed to meet patient needs, and that palliative care training is prioritised for healthcare professionals working in an Emergency Centre.
Open Access
A Qualitative exploration Of A Support Group Intervention Among Women With Cervical Cancer At Tiyanjane Clinic For Palliative Care, Queen Elizabeth Central Hospital, Blantyre, Malawi.
(2020) Nkhoma, Mwandida Mdazepa Matilda; Gwyther, Liz; Bates, Jane
Background: Cancer of the cervix is a common malignancy among women and is one of the leading causes of cancer morbidity and mortality in Malawi. The majority of women with cervical cancer present with advanced disease where cure is not possible. These women face many challenges that affect their lives holistically. In particular, the psycho-social impact is common for women living with cervical cancer and psychosocial care does not have sufficient attention as the focus is management of the disease and physical symptoms. However, research shows that support groups are associated with improvements in intimacy, emotional support and becoming better informed for women living with cancer of the cervix. Methodology: This was a qualitative research study. Semi structured interviews were used to collect data and were audio-taped. A purposive sampling technique was used in selection of participants. One to one interviews were conducted with eight (8) women diagnosed with cervical cancer because data saturation was reached at that number. Thematic analysis was undertaken where four phases of organisation, familiarization, reduction and analysis were used. Results: The following themes were identified: intimacy, emotional support, becoming informed and drawbacks of support group. Conclusion: A support group intervention is found to reduce psychosocial and intimacy distress associated with cervical cancer diagnosis. This leads to improved quality of life of these women and their families. Thus, a support group intervention has a potential to enhance appropriate holistic management plans for women with cervical cancer.
Open Access
A qualitative study of the experience of primary caregivers of patients receiving end of life hospice care
(2023) Lubbe, Johanne; Farrant, Lindsay
Introduction. A life-threatening illness impacts profoundly not only the patient but also the family. As the spouse or partner is often the primary caregiver for patients with a life-threatening illness it especially affects the couple as a unit, rather than isolated individuals. The Aim of this study. To explore and describe and describe the experience of primary caregivers of patients at end of life receiving care from Hospice Bloemfontein. Objectives. 1. To obtain an in-depth description of the experience of primary caregivers of patients within hospice care. 2. To explore and describe primary caregivers' coping mechanism while providing care. 3. To explore and describe support structures and resources that assist the primary caregiver. Methods. A qualitative study was conducted through individual semi-structured interviews, to explore the experiences of primary caregivers taking care of their partners with a life-limiting disease in hospice care in Bloemfontein, Free State. Results. The findings of this study reflect on the complex experiences and emotional responses of primary caregivers taking care of their partners with a life-limiting disease in hospice care. It also reflects on the demands that are placed on those caregivers to meet all the different and multidimensional needs of their ill partners, which include the effect it has on them financially, physically, and personally. The study further reflects on their emotional reaction to the illness, their caregiving and the impending death of their partners in a context where they are often isolated. Certain factors added to and others relieved caregivers' distress. Although there were common themes, the reactions and experiences of all participants were unique and individual. As a consequence of these demands some of the caregivers in the study experienced exhaustion, physical complaints, isolation, sleeplessness, spiritual distress, and unmet needs. Conclusions. This study reflects on the importance of the role of caregivers as an active participant in providing care and comfort during the final stages of the illness of a patient, but also reinforces the critical need to provide the necessary and adequate support to those caregivers. A thorough assessment is necessary to respond holistically to the unique and individual needs, challenges, and concerns of families.
Open Access
A study to determine the palliative care needs of patients with drug resistant tuberculosis in the Southern sub-district of Cape Town
(2018) Odell, Shannon; Krause, René; Gwyther, Liz
Introduction: The Palliative Care needs of patients with Drug-Resistant Tuberculosis (DR-TB) are under-researched, yet pertinent in the management and control of DR-TB. Most literature reviewed focused on treatment schedules, outcomes, transmission, drug adherence, drug side effects and further drug-resistance. Aim: The aim was to determine the palliative care needs of patients infected with DR-TB living in the Southern sub-district of Cape Town. The Objectives The objectives were to determine the quality of life and symptom burden of DR-TB patients and to assess for correlation between these variables and palliative care needs. Methodology: In this cross-sectional study, twenty-eight participants were posed a culturally sensitive questionnaire designed by the researcher, that comprised: demographic questions, Likert-type questions for the African Palliative Care Association – Palliative Outcome Score (APCA-POS) tool, Eastern Co-operative Oncology Group (ECOG) score, a symptom checklist and open patient dignity questions. Quantitative and qualitative data of the respondents’ quality of life, functional status and burden of symptoms in the preceding week were ascertained. Pre-determined numerical scores in the Likert-type questions were deemed indicative of palliative care need. Results: Quantitative and qualitative analysis of the data showed that each participant had a palliative care need: be it either (or a combination of) unmet clinical, psychological, social and/or spiritual needs - despite being at differing stages of the DR-TB disease trajectory. These needs required contextualizing within the respondents’ communities where socio-economic issues were prevalent. Predominant physical complaints were tiredness (79%), joint pain (64%), confusion (61%) and shortness of breath (51%). Respondents’ also experienced a loss of autonomy, poor self-value and financial insecurity. Fifty percent of patients interviewed required urgent further management and referral to the local clinic. Conclusion: Despite the small cohort of patients and possible recruitment bias, this research concurred that a palliative care approach be adopted from the point of DR-TB diagnosis and throughout the treatment period – regardless of treatment outcome; and that DR-TB patients had significant unmet palliative care needs that affected their quality of life, functional status and dignity, regardless of whether pain was present.
Open Access
A Study to Identify the Burden of Chronic Disease on a Private Emergency Medical Service in the Southern Sub-District of Cape Town, and if there is a Need for Palliative Care Provision in the Pre-Hospital Healthcare Sector
(2023) Holmes, Linley; Odell, Shannon; Gwyther Elizabeth
Introduction Paramedics are often the first healthcare personnel to provide contact and care to patients with exacerbation of their chronic, non-communicable disease. Many of these patients will call for assistance multiple times during the trajectory of disease, and may benefit from a palliative care program. Currently, paramedics are not trained to manage patients requiring palliative care, nor provided with specialist palliative care consultation resulting in many patients being transported to hospital unnecessarily. Aim This study aims to describe the burden placed on Emergency Medical Services due to the number of patients with chronic Non-Communicable Diseases experiencing acute symptoms, and to assess whether palliative care in the pre-hospital sector should be considered. The objectives of the study include understanding whether patients with non-communicable disease symptoms were transported to a medical facility or remained at home, what clinical management they received, and whether there is a need for education, inter-disciplinary consultation, and provision of palliative care, in the pre-hospital environment. Methods This was a retrospective descriptive analysis of de-identified patient PRFs of adult patients, attended to by a private Emergency Medical Service (EMS) between January 1st, 2019, up until 30th April 2019. Results Of the 283 patients included in the study, many had more than one NCD, often experiencing more than one of the primary symptoms of pain, SOB, cognitive changes, and N&V simultaneously. The majority of these patients were likely to go to hospital with ambulance transport and frequently there was no appropriate clinical intervention by paramedics. Clinical advice was seldom sought by paramedics for patients with NCDs (cancer, chronic heart disease, chronic lung disease, dementia, and chronic kidney disease) experiencing symptoms of pain, SOB, cognitive changes and N&V, and it was evident that palliative care access, and availability, for patients was minimal. Conclusion Palliative care is a necessary approach to patient-centred care, with specifically trained EMS and paramedics being an available resource to assist with this approach. Access to available palliative/ home care networks, in conjunction with education and EMS support, will facilitate care for patients that have a need for palliative care support in the out of hospital context, and will limit the inappropriate transport of patients to already over-burdened Emergency Departments.
Open Access
A survey of the knowledge and perceptions of South African medical practitioners concerning the use of medical cannabis by patients
(2022) du Plessis, Karlien; Gwyther, Elizabeth; van Dyk, JC
Background: South Africa has recently legalized the cultivation, possession and use of cannabis by adults in South Africa. There has been much debate, discussion and controversy about cannabis as a treatment for pain and other symptoms and a demand for use of cannabis amongst patients. Medical personnel feel understandably uninformed and confused by the discrepancy between the available information and the increasing interest that patients and their families have demonstrated towards cannabis. They are therefore challenged to ensure they are equipped with knowledge to advise patients about the safe use of cannabis in the palliative setting. Aim & Objectives: The aim of the study is to identify the knowledge and perceptions concerning medical cannabis for palliative care patients amongst South African doctors. The objectives are to survey South African medical practitioners with regards to their knowledge and perceptions concerning the use of medical cannabis. To review the current literature as to what is the recommendations regarding the use of cannabis and how to inform doctors regarding the possible benefit and harm. To draw on the evidence and regulatory statements to advise practitioners as to an approach for a palliative care patient with regards to the use of medical cannabis in the palliative setting. Methodology: Physicians working in the field of oncology and palliative care completed an anonymous online questionnaire concerning the use of medical cannabis for palliative care patients. The survey assessed the participants demographic detail, as well as what their thoughts were regarding the use of cannabis. Also, what possible benefits as well as the concerns they had and the ease with which they speak to patients about the use of cannabis. Results: The response rate was 33.3%. The respondents were 40 medical doctors, 21 men and 19 women. Among those medical doctors, the majority (62.5%) had more than 10 years of experience. Almost half of the doctors (45%) stated that patients asked for their opinion on use of cannabis at least weekly. The majority of medical doctors interviewed (77.5%) stated that they attempted to obtain information regarding the use of cannabis for palliative patients. While 70.5% of the practitioners considered cannabis as beneficial, only half would suggest it to patients for palliative care and chronic pain. When questioned about concerns, 60% were concerned about side-effects and 20% reported that cannabis could potentially do more harm than good. Need for more evidence. Conclusion: Cannabis is not a registered medication for use in the medical setting due to lack of evidence. Patients and doctors are looking for information regarding the use of cannabis in palliative care, possible benefits as well as side effects. The use of cannabis is largely patient driven and there is a need to overcome the legal and logistic barriers in order to do more research in the use of cannabis for palliative patients so that medical practitioners can advise their patients from evidence-based data.
Open Access
An assessment of the current status of integration of palliative care into primary health care centers in Alexandra community
(2019) Soogun, Olusoji; Gwyther, Elizabeth
Introduction-The WHA resolution in 2014 to strengthen PC as a continuum of health care service delivery mandated member states to incorporate PC into their NHS using the PHS. An assessment of a health system will only be complete when the four elements of the PHS that (entrenches palliative care) are assessed alongside preventative, curative and rehabilitative care. Aim-To assess the current status of integration of PC into the PHC centers in Alexandra community in Johannesburg, South Africa. Objectives - 1) to identify the existing policies including budgets available in the clinics relating to PC, 2) to identify the availability of PC essential medicines in the PHC and 3) to survey the HCPs training in PC. Methodology- Each objective has different targets. Objective number 1) has clinic managers as its targets. Objective 2), HCPs and people involved in procuring and prescribing essential medications and objective 3), all the HCPS. Data was collected using structured questionnaires administered by the researcher and analyzed using statistical tables. Results-The clinic mangers are not aware of NPFSPC, there is no provincial policy, budget or any existing policy on PC in any of the clinics. The essential medicines are available in the clinics, only recent graduates has undergraduate trainings in PC, no HCP has any post graduate training in PC at any level (Certificate, Diploma or Masters) as recommended by the WHA resolution to member countries. Skills in PC is close to zero in the PHCs. Conclusion-The study confirm the findings in previous literature and highlights the needs for PC policies and continuous training in PC for HCPs, essential medicines for PC are in the clinics contrary to findings in other LMIC.
Open Access
An exploration of Doctor's perceptions and the provision of Palliative Care at a Private Hospital in Gauteng, South Africa.
(2020) Booth, Elizabeth Cecile; Ganca, Linda
Introduction: Palliative care is a core component of comprehensive health care across a person's life span. South Africa is currently in the process of integrating palliative care into all levels of the health care system. Doctors play a vital role in providing these services, but misconceptions about palliative care and who should be providing it, may prevent these services from being offered. Aim: The aim of this study was to discover doctor's perceptions and the current provision of palliative care in a private hospital. Objectives: The objectives of the study were: (1) to explore doctors' experiences of pain and symptom management in palliative care; (2) to explore doctors' perceptions of palliative care, goals of care and teamwork in palliative care; and (3) to explore the doctors' provision of palliative care at the hospital. Methodology: This was a qualitative study using a grounded theory approach. Semi-structured interviews were conducted with 14 participants, made up of doctors in oncology, physicians, surgeons, a cardiologist, an intensivist, a hematologist and a general practitioner. Interviews were recorded, transcribed and an inductive process was used for data analysis which allowed for categories to emerge from the data. Results: Eight themes emerged from the data analysis: improving the quality of life; palliative care as a role for oncologists; late referrals to palliative care, views on the World Health Organisation analgesic pain ladder; morphine a controversial means of pain control; team approach; family involvement and spiritual care. Conclusion: Palliative care was seen as an important intervention for a dying patient, but by introducing these services so late, patients are not benefitting from all that palliative care has to offer. Doctors did not always have a good understanding of when and how to provide palliative care. The following recommendations were made: (1) further research to be conducted in more private hospitals; (2)engage with management and doctors to begin the process of offering more formalised palliative care services at the hospital; (3) networking with available palliative care services, (4) organising palliative care training and workshops and (5) palliative care awareness campaigns.
Open Access
An exploration of patients' preferences and priorities for end-of-life care at Titanjane Clinic for Palliative Care, Queen Elizabeth Central Hospital, Blantyre, Malawi
(2018) Chitani, Alex Jackson; Ganca; Linda; Bates, Jane
Background For patients to have a dignified death, their wishes should be known and respected. The challenge is that, if conversations about death are avoided by patients, their families and health professionals because talking about death is taboo, it becomes hard to plan and implement preferred care for such patients. The researcher undertook an exploration of patients’ preferences and priorities for end-of-life care at Tiyanjane Clinic for palliative care, Queen Elizabeth Central Hospital, Blantyre, Malawi. The topic is regarded as sensitive and taboo in Malawi because discussing end-of-life care preferences and priorities is taken as prophesying death. Methodology This was a qualitative, descriptive study. Equal opportunity to participate in the study was provided to all adult patients diagnosed with life-threatening illnesses at the Clinic. Most participants were infected with the HIV virus. Data was collected by means of semi-structured interviews that were recorded and afterwards transcribed verbatim. A thematic framework was used to inform the systematic approach to data analysis. Results In December 2015 and January 2016, interviews were conducted with 14 adults (six men and eight women). The following 10 themes emerged from the data: Awareness of reason for being at Tiyanjane; reluctance to mention HIV; psychosocial concerns, expressed emotions; legacy; receiving information; decision-making; place of care; place of death; and spiritual concerns. Conclusion This research shows that, although choices are limited in Malawi due to a lack of resources, patients need to be given an opportunity to make their own healthcare choices. This research has shown that it is not as hard to start end-of-life care conversations as previously thought. Further research needs to explore whether advance directives or legal wills should be offered as part of care for palliative patients in Malawi, as most of the participants highlighted the need to be heard in regard to their wishes being upheld after death.
Open Access
An Investigation of the Benefits of Palliative Care for Patients with Chronic Heart Failure at a Novel Hospital-Based Palliative Care Service.
(2018) Hunter, Joy; Gwyther, Liz
INTRODUCTION: Heart failure is a chronic cardiac condition that would benefit from palliative care and yet palliative care is still mainly provided for people with cancer or HIV. Patients with end-stage heart failure experience similar clinical symptoms as patients with advanced cancer with significant physical and emotional suffering. This research study investigated and assessed the benefits of palliative care in this vulnerable population at a district hospital in Cape Town and emphasized the importance of a hospital-based palliative care facility. METHODOLOGY: A cross-sectional descriptive qualitative study was conducted with in-depth interviews of people living with heart failure using thematic analysis of patient interviews. The study was conducted at a palliative care facility at a government district hospital. Purposive sampling was used for patient selection. A total of 12 participants were interviewed until data saturation. RESULTS: The mean age of the 7 men and 5 women interviewed was 52 years, the youngest participant was aged 27 years old and the eldest was 78. Analysis of these 12 semi- structured interviews produced five main themes. The first theme that emerged focused on issues of high service usage due to recurrent hospitalizations in the group, the second on communication factors in palliative care. The third theme was on information and education, the fourth on the importance of resources in palliative care and the last theme was on the Abundant Life Palliative Care Programme. DISCUSSION: Findings from this study supports the importance of palliative care for people with heart failure. Palliative care early in the disease aims to improve the quality of life for such patients and their families. The data supports the fact that early referral for palliative care resulted in greater symptom control and benefit to the patient long before hospice care is needed. Previous studies have also proven to reduce re-hospitalization rates of this population while reducing costs to the healthcare system.
Open Access
Assessing palliative care needs in children with HIV and cancer: the case of children attending University teaching hospital in Zambia
(2015) Mutale, Wilbroad; Gwyther, Liz
Background: WHO has been advocating for provision of palliative care for all who need it according to needs and context. Though significant advances have been achieved in providing palliative care for adults in Sub Saharan Africa, very little progress has been made in providing paediatric palliative care. Coverage of paediatric palliative care services have remained low and there is lack of evidence on child specific palliative care needs and tools for assessing these needs. This study tested applicability of some tools for assessing palliative needs in children in the Zambian context and reports palliative care needs of children and their families attending the University Teaching Hospital (UTH) in Lusaka, Zambia Methodology: This was a mixed study with quantitative and qualitative components. The quantitative component assessed and applied 2 new research tools for assessing palliative care needs in children attending University teaching hospital in Lusaka, Zambia. The tools assessed included the Needs Evaluations questionnaire (NEQ) and the paedsQL4 questionnaire. Cronbach's alpha was used to determine reliability while factor analysis was used to identify relevant factors. Focus group discussions were conducted with selected group of parents/legal guardians of children. In-depth interviews were conducted with key informants. All participants were purposely selected to take part in the study and were informed about the voluntary nature of the study. Results: The NEQ and the paedsQL4 questionnaires were both found to be reliable for assessing palliative care needs for children in the Zambian context (Cronbach's alpha >0.8). Generally there were very high need gaps across all hospital wards with 15/23 items having need gap of >50%. Overall the largest need gap was in the information domain. The HIV ward had least need gap with only 8/23 items having a need gap of > 50%. Results from the paedsQL4 showed that there were significant mean differences across the three categories of patients in all domains of functioning with oncology patients performing worst. In physical functioning domain, the items showed that 6/7 items had significant mean differences (p<0.05).Confirmatory factors analysis showed that 2 items were loading highly on the physical functioning factor. These were running and participating in sports (0.896).In the emotional functioning domain, 2 items loaded highly on factor analysis, feeling sad (0.842 and angry (0.666).In the social functioning domain, highest loading were in 2 items, both related to making friends. In the school domain missing school to go to hospital loaded highly on factor analysis (0.842) followed by difficulty paying attention in class (0.716) Qualitative results supported findings from quantitative data. Several needs were highlighted by the parents/guardians and health workers. The major family needs focused on economic/financial and bereavement support. Most families were referred to the UTH from very far off places without any form of support. In line with quantitative findings, there was high demand for information for families which health workers did not adequately provide. One major barrier identified to provision of palliative care was poor coordination of services with most patients missing out on services which were already available. While social workers were available, poor funding negatively affected this service. There were very few trained health workers in palliative care. Pain management remained poor with many clinicians still not comfortable to prescribe stronger analgesia such as morphine for severe pain. Conclusion: This study applied two quantitative tools for assessing palliative care needs in Children. The results showed that the tools were fairly reliable and applicable in the Zambian context. The findings indicate huge needs gap for child palliative care services in Zambia. The major family needs were economic and bereavement support. There was high demand for information for families which health workers did not adequately provide. Pain control remained sub-optimal especially for children with cancer. One major barrier identified to provision of palliative care was poor coordination of services.
Open Access
Assessing the need for spiritual care and evaluating the usefulness of a spiritual assessment tool in a multicultural population of patients with life threatening illnesses in South Africa
(2009) Blanchard, Charmaine Louise; Gwyther, Liz
To assess the need for spiritual care in a multicultural population of patients with life threatening illnesses in South Africa and to evaluate the usefulness of a spiritual assessment tool in introducing spiritual care into the consultation.
Open Access
Assessment of health related quality of life in HIV positive children
(2005) Jones, Stephanie; Gwyther, Liz; Kibel, Maurice
Background: Quality of life is an important concept because it is the essence of health as defined by the WHO. Pain and other distressing symptoms affect children's quality of life. There is very little published information on pain in children with HIV infection, its prevalence or its affect on their quality of life. This study will add to a growing body of literature on health-related quality of life (HRQOL), but more specifically address these issues in a South African context of HlV/AIDS in children. Such data is currently not available. Methods: A cross sectional descriptive study with an analytic component was performed on a convenience sample of 30 caregivers who attended the Paediatric HIV Clinic at Chris Hani Baragwanath Hospital, Johannesburg. All data was collected by a single investigator over a 4 month period. An established, multidimensional health related quality of life assessment tool (The PedsQL(TM) 4.0) designed for children, was used to measure HRQOL. Results: Mean HRQOL scores were evaluated as well as those for physical and psychosocial health. Scores resembled those of children with other chronic diseases. Disease progression affected the scores with lower values for those children with advanced disease. Where no disclosure of HIV status occurred scores were lower for all dimensions. The prevalence of pain in HIV-affected children was 83%. Caregivers reported 55 individual pains in 12 different regions of the body. On average each patient had 2.3 pain sites. Parents often had difficulty describing the nature of the children's pain. Moderate to severe pain was associated with decreased HRQL scores. Discussion: This study is the first to examine pain and HRQOL in HIV-infected children in South Africa. As the nature of HIV changes to a chronic disease with the availability of antiretroviral treatment, HRQOL will become more important as a medical outcome measure. The PedsQL inventory is brief, easy to understand and takes only about 10 minutes to complete. This makes it an ideal tool for a busy clinic setting. Comprehensive, multidisciplinary health services will be required to minimize long-term illness and disability and to maximize children's potential as they move into adolescence and adulthood. The small study number leant itself to a descriptive study of exploratory nature. A follow up study which includes children's self report in their ﬁrst language would be valuable.
Open Access
An assessment of the prevalence and associated burden of symptoms in HIV patients in Swakopmund, Namibia
(2016) Brand, Maja; Gwyther, Liz
Background: HIV infection and AIDS are characterized by a multitude of symptoms which has not changed since the advent of HAART. Based on this reality the World Health Organisation (WHO) recommends palliative care to be provided alongside disease specific treatment for all PLWHIV. There are many barriers to patients reporting their symptoms and physicians often fail to recognise the symptom burden. Palliative medicine improves quality of life, relieves suffering, provides good end of life care and helps patients and loved ones to come to terms with a chronic progressive disease. Namibia is one of the hardest hit countries globally with respect to the HIV epidemic. No palliative care services are available in that country yet. No research has been done to assess the prevalence and burden of symptoms amongst PLWHIV. The study serves as a pilot project to address these shortcomings. Aim: The aim of this study is to assess the prevalence and associated burden of symptoms in patients attending an HIV clinic in Swakopmund and local general practitioners' awareness of the symptom burden and assessment in HIV patients. Methods: This was a cross-sectional descriptive study conducted at the HIV clinic at the State Hospital in Swakopmund, Namibia, and amongst general practitioners working in the Erongo region. The study was conducted in two parts: 1) Assessment of symptom prevalence and severity in HIV patients on HAART attending the HIV clinic at the Swakopmund State Hospital. A total of 104 adult patients were recruited using simple random sampling was used to recruit 104 adult patients who were interviewed using the MSAS-SF. Demographic data and symptoms recorded by the health care professionals during follow-up visits were extracted from the patients' records. 2) The evaluation of general practitioners' perception regarding the symptom burden and importance of symptom assessment in HIV patients receiving HAART. Based on the outcome of the above findings a questionnaire was designed to assess the awareness of general practitioners of the burden of disease in PLWHIV. Ethical Approval was obtained from the Human Research Ethics Committee of the University of Cape Town as well as from the Ethical Committee of the Ministry of Health, Namibia. Results: The median of the sample was 40 years, the median CD4 count 417, and the median number of years on HAART was 4. The majority were females (61.5 %) and 66.3% were employed. The mean number of symptoms was 5.99 (median 5, SD 4.912). The most common symptoms were of psychological nature and pain, cough and peripheral neuropathy were common physical symptoms. Median values of TMSAS, GDI and PSYCH were higher in the unemployed and in females. PHYS was significantly higher in females. There was no association with the CD4 count. Time on treatment is not significantly related to any of TMSAS, GDI, PH YS or PSYCH scores, but younger age was related to higher GDI. Patient self - report of symptoms was significantly higher than symptoms recorded by the health practitioners during follow-up. Many general practitioners (44%) assume patients on HAART to be relatively symptom free, that low CD4 counts are related to symptom burden (84%) and that patients will report symptoms if present(76%). Conclusion: Symptom prevalence and burden is high in this study population despite HAART and there seem to be barriers to the reporting of symptoms by the patients. There is evidence of poor symptom assessment and symptom control. This highlights the need for palliative care for ambulatory HIV patients.
Open Access
A combined perception and needs assessment study of home based palliative care among patients with life-threatening diseases attending the Federal Medical Centre Abeokuta, Nigeria
(2009) Oyebola, Folaju Olusegun; Gwyther, Liz; Oliver, David
This study aimed to evaluate the perception and needs for Home Based Palliative Care (HBPC) among patients suffering from life-threatening conditions presenting at the Federal Medical Centre Abeo-Ogun State, Nigeria. Needs assessment for this specialized care were investigated among cancer and HIV/AIDS patients receiving treatment in this health institution. Questionnaires were administered to the patients and statistical analysis of the collected data evaluated.
Open Access
Common medical problems in late stage HIV/AIDS adult patients in rural Mpumalanga and the resources used for their care
(2002) Hardman, M G; Harley, Beth
The objective of this study is to identify the common medical problems seen in late stage HIV/AIDS patients in rural Mpumalanga, South Africa and the resources used for their care.
Open Access
The cost, cause and place of death in patients dying with HIV/AIDS and who have access to ART
(2005) Hellström, Lize; Boulle, Andrew
The study aimed to explore the causes of death, the costs involved in these deaths as well as the places where these deaths occurred. As all patients had access to ART once registered with the disease management company, AfA, most patients would have received ART, once the criteria for starting treatment were met.
Open Access
A cross-sectional study on the quality of life in HIV infected goldminers on highly active antiretroviral therapy in an industrial setting in South Africa
(2005) Mngadi, Kathryn Therese; Gwyther, Liz; Churchyard, Gavin
This study set out to document quality of life in the industrialized setting of HIV infected South African gold minders who are on highly-active anti-retroviral therapy, by administering the MOS SF-36, and to determine which categorical variables impact on QOL in this study cohort. It also intended to promote routine quality of life measurements, as an index of programme performance, and to strengthen the case for widened access to anti-retroviral treatment. A cross sectional survey of 202 outpatients was carried out at the central clinic at the health service hospital owned by Anglogold in the Northwest Province. Scores of eight scales of the MOS SF-36 measuring different aspects of quality of life were calculated. Demographic and laboratory data were collected from a separate case report form and the clinic database, as part of the categorical variables. Results showed that more than 59% of all respondents achieved scores of 100 for all subscale domains, and that the only categorical variables that showed statistically significant impact was age, with QOL scores on the physical function domains decreasing with age. This decrease in function was thought to be more attributable to age, than HIV status, stage or progression. The sample population was noted to have a high level of health care, and exhibited both the well-worker and survival cohort effect, as a result of a stringent pre-employment selection, on-going occupational fitness assessments and medical boarding in the case of sub-standard fitness.
Open Access
A descriptive analysis of the pilot paediatric palliative care unit at Witwatersrand Hospice, Johannesburg
(2005) Lincoln, Danielle; Gwyther, Liz; Meiring, Michelle
Aim of study: to analyze the profile and management of patients admitted to the pilot paediatric unit in order to make recommendations for the further development of the unit.
Open Access
Difference in quality of life of referred hospital patients after hospital palliative care team intervention
(2004) Kirk, Judy Gail; Collins, Kathleen
Since 1948, when the World Health Organization (WHO) defined health as being not only the absence of disease and infinity but also the presence of physical, mental, and social well-being (Constitution of the World Health Organization, 1952), quality of life issues became more apparent. The aim of the research undertaken was to establish whether the hospital palliative care team (HPCT) at the Johannesburg General Hospital was making a difference to referred hospital patients' quality of life. The HPCT was started at the Johannesburg General Hospital in 2001. The team functions as an advisory body on pain and symptom control. 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. The method used was the FACT G questionnaire, which was completed by the patient group initially, and thereafter HPCT intervention. The questionnaire is used to measure quality of life (QOL). The study is a descriptive cohort design. The first 24 patients completed the informed consent prior to completing the questionnaire. The pre QOL questionnaire served as the baseline QOL scores prior to HPCT intervention. The initial QOL scores were then compared to the post QOL scores after HPCT intervention. Seven subjects were excluded from the research as six patients were discharged from hospital early due to a bed shortage and one patient died. The seven patients' results from the pre FACT G questionnaire were discarded and all subsequent calculations did not include their results. The increase in the total percentage scores (45.53 to 63.35) was statistically significant (p< 0.001) using the paired t-test. Thus the results show a significant difference between pre and post assessment QOL scores. The research demonstrates significant improvements in patients' quality of life (p<0.001) after HPCT intervention. It is hoped that future research would continue to show the value of HPCT and their effect of benefiting patients' quality of life.

Browsing by Subject "Palliative Medicine"

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