OpenUCT :: Browsing by Author "Gwyther, Liz"

Browsing by Author "Gwyther, Liz"

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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 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 understand the experiences of adolescents and young adults living with cancer in a northern cape public health setting
(2020) Spies, Leana; Gwyther, Liz; van Jaarsveld, Dalene
Introduction: The challenges and holistic care needs of adolescents and young adults (AYAs) with cancer in low- and middle-income countries are under-researched. This limits evidencebased information regarding their experiences related to palliative care and quality healthcare services, resulting in a neglect in planning services for this population. Aim: The aim of the research study was to explore and identify the challenges experienced by AYAs with cancer in a Northern Cape public health setting. Objectives: The objectives were to describe the key concerns and priorities experienced by AYAs with cancer, to determine their holistic care needs and to identify the current limitations of healthcare resources that influence the provision of appropriate palliative care for AYAs with cancer in the Northern Cape. Methodology: In this qualitative study, purposive sampling was utilized to select AYAs with cancer and between the ages of 18 and 39 years. The participants recruited were patients from the Northern Cape public health setting who received curative or non-curative cancer treatment at either Robert Mangaliso Sobukwe Hospital or Harry Surtie Hospital oncology centres. Their experiences were explored using individual, open-ended semi-structured interviews. Data were analysed using thematic analysis. Results: A total of twelve participants between the ages of 22 and 39 were identified. Male and female participants were equally representative of the sample and their cancer diagnosis included many diverse tumour types that ranged from Hodgkin's lymphoma, breast cancer, testicular cancer, larynx cancer, melanoma, and colon cancer, to Human Immunodeficiency Virus/Acquired Immunodeficiency Syndrome-related malignancies such as Kaposi's sarcoma, cervical cancer, and non-Hodgkin's lymphoma. Six key themes emerged that provided insight into the challenges experienced by AYAs with cancer. These challenges were interrelated on a physical, psychosocial, spiritual and healthcare level, and they included the physical impact of cancer, additional illness burdens such as Human Immunodeficiency Virus and Tuberculosis, health system issues such as poor communication, delayed diagnosis, negative nursing attitudes, poor health services, inadequate resources, and transport problems. Apart from similar challenges experienced by AYAs with cancer in developed countries, such as overwhelming emotional responses, threatened dreams and hopes, a need for emotional counselling and better support systems, participants from this study also reported the impact of socio-cultural influences such as stigmatization, cultural beliefs, socio-demographics, poverty, unemployment, and a lack of cancer awareness and education within communities. Conclusion: AYAs with cancer experience complex, multidimensional, interrelated challenges that include many health system issues. In a middle-income country, these challenges are amplified by additional factors such as communicable diseases, sociocultural influences, and poverty. Consequently, their holistic care needs are largely unmet. Even though the findings may only be generalizable to limited settings, they can be transferred to form specific recommendations on how to improve the quality of life of AYAs with cancer and that of their families in the Northern Cape public health setting. As reflected by these findings, higher interventions on a National Health level in order to implement the current national palliative care policy, are required. Advancements in AYA oncology care that acknowledge their unique developmental age, emotional capacity, distinct life stage, and social background are also pivotal. Notwithstanding the significant challenges that plague quality healthcare delivery in the Northern Cape, further research to elucidate the meaning of age-appropriate care and the development of comprehensive, integrated oncology and palliative care guidelines for AYAs with cancer in South Africa, is necessary in order to acknowledge and address their total pain.
Open Access
An evaluation of the development and implementation of a pain management guideline for the Knysna Provincial Hospital
(2018) Grey, Hilary; Gwyther, Liz
Introduction Pain is the symptom that most frequently brings patients to the hospital and impacts on the quality of patients and their families’ lives, yet researchers have shown that barriers to effective pain management for patients who suffer chronic pain remain. The barriers include professional, patient and system issues. Many of these issues could be seen at the Knysna Provincial Hospital. The literature reveals that the implementation of a guideline increases the success of the pain management process. This research looks at the implementation of a site specific guideline at the Knysna Provincial Hospital. Methodology This study incorporates both quantitative and qualitative analysis. The study has two phases; the first includes a quantitative analysis of file audits and the thematic analysis of three focus groups held to determine barriers and facilitators of the pain management process. Using the information garnered in phase-1 a guideline is developed and implemented. Phase-2 involves the quantitative analysis of files after the implementation of the guideline. Data management and analysis Data from the file audits in both phase-1 and phase-2 was analyzed using quantitative analysis techniques using the software; IBM SPSS 24.0. Data from the focus group discussion was thematically analyzed. Using data from the phase-1 audit and the themes from the focus group discussions a chronic pain management guideline was developed. The guideline was implemented and the phase-2 file audit was performed to establish the effect of the guideline on the pain management process at the Knysna Provincial Hospital. Ethical Considerations All participants of the focus group discussions were given sufficient information about the study to make an informed consent. Ethical approval was obtained from the UCT Faculty of Health Sciences Human Research Ethics Committee. Permission to conduct the research was obtained from the Western Cape Department of Health, Knysna Provincial Hospital, and the Knysna Sedgefield Hospice Board of Directors. Findings This study aimed to identify the barriers and facilitators to good pain management and use the findings to create a guideline. The focus group discussions showed that the current practice was inconsistent; the focus groups identified several barriers and facilitators to improved pain management. The initial file audit showed 84% of patient’s pain was assessed and only 59% were reassessed. Using the data from the file audit and FGD, a guideline was created to meet the needs of the Knysna Provincial Hospital. The file audit post the implementation of the guideline showed improved pain management processes with initial assessment at 100% and reassessment at 71%. The implementation of the new guideline was flawed and only 35% of files audited showed evidence that the new process was used. Conclusion The guideline developed based on the file audits and identification of barriers and facilitators during focus group discussions improved the pain management process at the Knysna Provincial Hospital.
Open Access
An investigate of factors that influence intergration of Palliative care in state hospitals
(2019) Lazarus, Rebecca; Ganca, Linda; Gwyther, Liz
Background: Palliative care (PC) is considered a necessary component of care that needs to be integrated into the South African health care system, including hospitals. In South Africa there has been a growth in legislation and policy frameworks stating the need for and promoting the development of hospital based PC programmes, however, how hospitals implement these policies is still unknown. Aim: The aim of this study was to identify factors that influence integration of PC in state hospitals and develop implementation recommendations. Objectives: The objectives of this study were (1) To describe existing PC services in three state hospitals in the Western Cape as perceived by the PC team; (2) To identify prohibiting and promoting factors in the integration of PC services in the three hospitals; and (3) To elicit views of health care professionals on how challenges to integrating PC in a hospital setting could be addressed. Method: This was a qualitative study whereby individual semi-structured interviews were conducted with 17 key informants (five-seven at each hospital). To obtain perspectives from relevant professionals on an operational and management level, key informants included chief executive officers, nursing managers, PC programme managers, physicians, nursing sisters, pharmacists, and social workers. The data was recorded, transcribed and analysed through steps of thematic analysis. Results: A description of each hospital’s PC programme was provided. Prohibiting factors identified most frequently related to resource challenges (insufficient human resources, time for PC, infrastructure and funding), followed by the hospital culture (limiting attitudes and beliefs about PC), education and training (limited opportunity, time and funding), health care providers (lack of PC knowledge, communication and hierarchy), as well as patient, family, community, and policy factors. Enabling factors identified were mainly related to having adequate resources (PC champions, effective teamwork, infrastructure and financial support). Raising awareness of PC needs and benefits (using practical methods), education and training in PC (formal and informal training opportunities), support structures (self-care, management and government support), partnerships (networking), and community-based support were also identified as promoting factors. Conclusion: Recommendations generated from this study were as follows: (1) Conduct a needs assessment to determine the organisations’ readiness and needs for PC integration; (2) Identify PC champions who have an interest in PC and influence in the organisation; (3) Raise PC awareness by providing education and training opportunities, and making PC part of the hospital culture; (4) Ensure adequate amount and use of human and material resources for PC; and (5) Network and build partnerships with other organisations who already have PC services.
Open Access
An investigation into the management of depression in patients with late-stage cancer by South African oncologists
(2018) Fourie, Johanna; Gwyther, Liz
There are currently more people living with cancer than ever before. The management of the heavy symptom burden carried by these patients remain a critical subject. Of these symptoms, depression is one of the most frequently reported and debilitating symptoms in advanced cancer. The negative impact of untreated depression on both the patient and the healthcare system is well documented. The aim of this study was to explore how South African radiation oncologists manage depression in their late-stage cancer patients. The study focussed specifically on the use of screening tools, their choice of drugs and the mental health resources available to them. A convenience sample of 34 South African radiation oncologists that included participants from both the private and government sector completed an online questionnaire. The results from this study showed that these oncologists do encounter depression in their late stage cancer patients confirming the importance of the subject. While the lack of a universally agreed screening tool remains a problem, at least fifty percent of the respondents were already using some form of screening tool and thirty-five percent of the rest indicated their interest in implementing depression screening in their practice. When faced with a depressed patient, Seventy-four percent of these oncologists felt confident in starting antidepressants and all of them had some sort of mental health resources available to them. Unfortunately, the small study sample and self-reporting lead to concerns regarding the generalizability and validity of the study. However, the study remains valuable in its role of raising awareness for depression in our cancer population, identifying the shortcomings in our current management as well as identifying education needs in our health-care personnel.
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
Assessment of quality of care provided to patients who died in the care of Tshwane District Hospital
(2019) Zele-Mqonci, Nozuko; Gwyther, Liz
Objective: To assess the quality of care rendered to admitted patients in need of end-of- life care at Tshwane District Hospital in Pretoria Central, Gauteng, South Africa. Method: A combined retrospective review of the patient’s folder and a descriptive qualitative study through interviewing the deceased patient’s relatives was used. An after-death audit (ADA) tool, developed by the researcher and supervisor using the Gold Standard Framework ADA Tool, which is used in the UK was used as a reference as was agreed to be appropriate for this study. This explored the ability of healthcare workers at district hospital level to identify patients who were at end-of-life through noting and recording the end-of-life symptoms and signs and the interventions taken within the last 72 hours of the patients’ life. An interview guide for the bereaved family members was developed using the family medicine principle of patient-centred care and management in order to investigate their perception of the quality of care rendered to their relatives whilst admitted at Tshwane District Hospital during their last days. Results: 96 files were audited, revealing that patients between the ages of 21 years to 101 years were admitted. This confirmed the increase in number of older people with incurable chronic disease and multi-morbidity such as malignancy and HIV/AIDS, as compared to younger patients. Of those admitted, 55.2% were admitted from home and 15.6% were referred from a tertiary institution. 83% of these patients were admitted due to non-cancer diagnosis, of which about 36% of those admissions were HIV- related, followed by renal causes (10%), cardiac (10%) and COPD (3%). Cancer accounted for approximately 16.6% of the admissions. The duration of stay was between 4.3 to 4.7 days, with younger and white patients admitted for shorter periods compared to their older and black counterparts. The audited patient records recorded signs in their files (gasping - 51.04%, low BP, low pulse - 18.75%) and symptoms of end-of-life (confused, ill, weak - 18.75%) but patients were not identified or recognised as being close to end-of-life and were not referred for palliative care. The only recorded intervention that patients received was oxygen by mask (54.1%). Record reviews and family interviews revealed poor patient involvement in decision-making as only about 9.3% were involved in their own care management. There was also a lack of family involvement in patient management (4.4%), poor multi-disciplinary /team involvement as only 29.2% were referred to the other members of the multi-disciplinary team, and a low referral to hospice (8.3%). According to the 18 consented family members’ interviews conducted, there was lack of information with poor updates on patients’ problems or prognosis. Only 58,8% felt that enough information was given and the members interviewed were not offered any additional services (76.5%). They indicated that they thought referral to hospice would have improved the quality of life and care of their loved ones at end-of-life. The majority of family members (88.24%) also reported little care for patients during the dying phase as their relatives (patients) had symptoms (23.53%) but nothing had been done to relieve these symptoms. Conclusion: There is an increased need for palliative care and end-of-life care education and skills at district hospitals as most patients are admitted or down-referred for care to district hospitals at the end-of-life. When looking at interventions rendered, the study revealed poor quality of care rendered to patients at their end-of-life, poor patient and family involvement in management decisions, and a lack of multi-disciplinary approach of care. Helping or training of the healthcare workers at District Care level Hospitals to be able to recognise a patient in need of palliative care or have an ability in recognising those patients who require end-of-life care or are in their last 72hrs of life (which refers to the patients in the final hours or days of their lives, or those with a terminal illness that has become progressively advanced) is still a challenge in the District level hospital. The integration of palliative care at district hospitals would improve the quality of care for both patients and their families.
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
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
Effectiveness of palliative measures in treatment of dysphagia of cancer of the oesophagus
(2005) Liu, Chang-Han; Gwyther, Liz; Geddes, C
Cancer of the oesophagus,one of the most common cancers amongst the black population in South Africa with "cure" in this condition often considered as a "fortunate accident" by many experts in the field of oncology due to its late presentation and common occurrence of metastasis at presentation. The palliative care team focused their attention on measures to solve the cardinal symptom of this disease, which in most cases was dysphagia. This was also the main determinant of quality of life for these patients. Therefore, the primary objective of the study was to determine the effectiveness of the palliative measures in improving the cardinal symptom of oesophageal carcinoma - dysphagia. Accurate staging in most, if not all of the cancers is paramount, as it determines which options and sequences of treatment are appropriate. Oesophageal carcinoma is no exception. For patients stage III/IV, surgical resection of the tumour was attempted if possible. For advanced stage oesophageal carcinoma, that is stage III/IV, surgical resection with curative intent was not performed. The cardinal symptom of oesophageal carcinoma was then treated mainly with palliative radiotherapy, dilatation of the oesophagus with flexible bougie and oesophageal intubations.
Open Access
An evaluation of the current practices followed by oncologists in private practice in Cape Town, South Africa, in the management of patients with advanced cancer which no longer responds to anticancer treatment and the identification of the needs associated with such management
(2014) Grove, Jan; Gwyther, Liz
Managing patients whose disease has become unresponsive to anticancer treatment confronts oncologists with major stressors which may range from the management of distressing physical symptoms to complex psychosocial issues. These sets of circumstances prompted the undertaking of this study: An evaluation of the current practices followed by oncologists in private practice in Cape Town, South Africa, in the management of patients with advanced cancer which no longer responds to anticancer treatment and the identification of the needs associated with such management. A descriptive qualitative study was selected for data collection. Cross-sectional, in-depth semi structured face to face interviews were conducted with fifteen radio-oncologists working in five satellite units of a private oncology company in Cape Town. The interviews were conducted with the aid of a topic guide. The process of coding was employed to organise and manage the collected data. The following six themes which had a bearing on the main topic were distilled from the data: Oncologists' experiences pertaining to the management of patients with advanced disease; the difficult discussion necessary when a patient's disease became incurable and when it had to be decided whether anticancer treatment should be stopped; the decision to stop anticancer treatment; advance directives; oncologistsâ€™ burnout and the palliative care team approach. A description of challenging aspects associated with the management of terminally ill cancer patients is given. Identified needs include training of staff in palliative care; guidance for oncologists regarding the discussion of and the decision to stop anticancer treatment; implementation of advance directives; the development and employment of a multidisciplinary approach to provide palliative care; and support for oncologists facing burnout. Recommendations were made pertaining to appropriate training in the field of palliative care; the development of guidelines to aid oncologists in the discussion of and decision to stop anticancer treatment and the implementation of advance directives; the provision of palliative care through employment of a multidisciplinary approach led by a palliative care physician; and external support which should be provided by the oncologists' company to prevent and treat burnout.
Open Access
Evaluation of the development needs of palliative care programme managers in the context of providing quality palliative care to increasing numbers of patients in Kenya, Malawi and South Africa
(2013) McGarvie, Susan; Gwyther, Liz; Mayers, Pat
This study intended to identify the professional development needs of palliative care programme managers in hospices in Kenya, Malawi and South Africa. The findings reveal that palliative care programme managers have professional development needs related to their management function that include an on-going professional development programme, training in management functions and palliative care training for non-clinical managers and staff.
Open Access
An evaluation of the palliative care unit at Groote Schuur Hospital
(2015) Robertson, Cara; Gwyther, Liz; Krause, S R
Background: Patients often present to the Emergency Department (ED) at the end of life. Caring for these patients present a unique set of challenges, and often the patients' and families' needs are at odds with the pervasive rescue-oriented ED culture. A potential solution to this problem is an Acute Palliative Care Unit. Groote Schuur Hospital opened such a unit in April 2011, managed by the ED staff. This kind of service was not available in this tertiary, academic state hospital prior to that. Objectives: This study aimed to evaluate aspects of care at the Groote Schuur Hospital Palliative Care unit by designing a questionnaire based on the Liverpool Care Pathway assessing elements of care, describing the population admitted demographically, recording outcomes and making recommendations based on the findings. Methods: A retrospective folder review was completed on all patients who were admitted to the unit between April 2011 and May 2013. Data was collected onto an Excel spreadsheet, and was analysed using the SmallStata 13 software package. Demographic data collected included sex, age, area from which the referral came, diagnosis, length of stay and outcomes. Data on care were grouped into physical care, psychological care, spiritual care, communication skills and bereavement care. Results: 176 folders were identified. 167 were reviewed (nine were missing). Nine folders did not meet inclusion criteria. 158 folders were included in the study. The vast majority of patients were admitted from home via the ED. Mean age was 59.49 years (95% CI 56.76 – 61.53). Median length of stay was 25 hours (IQR 7-47). 97 patients had palliative care needs in the absence of malignancy, 60 had cancer. 111 (70.7%) patients died in the unit, 5 (3.18%) died en route to the unit, 16 (10.19%) went home, 8 (5. 1%) were referred back to other specialities and 17 (10.83%) were referred to step down facilities. 96% of patients had their medication adjusted, and 128 (81.53%) were commenced on syringe drivers. Morphine, haloperidol and hyoscine butyl bromide were the commonest prescribed medicine in the syringe driver. None of the patients had an official "Do Not Resuscitate" (DNR) form completed, but more than 75% of patients had a note or clear proxy measures indicating that resuscitation is not indicated. Difficulty with communication was present in 8 (5.26%) patients and 10 (6.58%) families. Less than 15% of patients had documented psychological support and less than 30% had documented spiritual care. Bereavement care was also poorly documented. Conclusion: This study described the demographics of, and evaluated the care offered in the Groote Schuur End-of-Life unit. Much of the care is comparable to current recommendations, but there is concern that symptoms may be underestimated in the absence of formal tools. Recommendations include using different terminology w.r.t. the unit, establishing a consulting and outpatient service based at the hospital, implementing formal symptom assessment tools, implementing the formal policy w.r.t. DNR orders, and improved overall documentation. There is scope for further research on interventions such as this one, especially on its impact on staff and its cost-effectiveness. This model of care achieves care comparable to current global recommendations in end-of-life care and can be implemented in similarly resource-restricted contexts.
Open Access
An evaluation of the palliative care-related outcomes of a cohort of TB patients in a district hospital setting: a multiple methods quality improvement study
(2013) Defilippi, Kathleen Mary; Gwyther, Liz; Harding, Richard
Although curable, tuberculosis (TB) remains a serious health care problem. During 2011 there were almost 9 million new cases and 1.4 million TB deaths worldwide. The World Health Organisation (WHO) lists South Africa as a country with a high TB, HIV and MDR-TB burden. In this country the dual TB/HIV epidemic which has reached critical proportions is fuelled by the high TB/HIV co-infection rate. By definition the focus of palliative care is on the alleviation of suffering associated with lifelimiting illnesses. TB clearly falls into this category. The palliative care-related outcomes of a cohort of hospitalized TB patients were determined during this prospective longitudinal study and a quality improvement strategy was then generated from the audit data. The APCA POS, a validated outcome measurement tool was used to conduct weekly interviews. The audit sample comprised 57 patients with MDR-TB and 57 with drug responsive TB (n=114). The intensity of the multi-dimensional palliative care-related problems experienced by TB and MDR-TB patients on admission as well as the differences that occurred over time were measured over four consecutive weeks. In order to get staff perspectives on using the audit data to develop a quality improvement strategy, a report on the analyzed audit data formed the basis of a focus group discussion (FGD). The purposive sample of FGD participants included key members of staff from the TB and MDR TB wards. Audit findings indicated that on admission to hospital the predominant problems were pain, symptoms and worry. On a Lickert scale of 0-5 with 0 indicating best and 5 worst, the median score for both pain and other symptoms was 3.0, with an inter-quartile range of 2.00-4.25. Participants' worry about their illness attained the worst median baseline score of 4.0. Neither pain nor symptoms showed any sustained improvement over the four weeks of data collection. A statistically significant improvement in worry which moved from 4.0 to 2.0 occurred after week 1 but then remained static. An unexpected crucial finding was that the collective score for participants with drug responsive TB was worse than for those with MDR-TB for both the physical and psycho-social components, and at each time point. Using the APCA POS audit data as the basis of a FGD with key staff members resulted in the development of an appropriate palliative care-focused quality improvement strategy which they considered to be realistic and achievable within their busy hospital setting. Findings from this study support the recent WHO Declaration on the provision of palliative care for people with drug-resistant TB. Furthermore they clearly show that patients with drug responsive TB should not be excluded from a comprehensive palliative care person-centred approach. Palliative care within the context of TB is still an emerging concept. This study makes a meaningful contribution to the scarce information currently available. The topic is important in that the suffering experienced by vast numbers of TB patients and their families could and should be substantially relieved. It is suggested that it would be valuable to explore the impact of a palliative care approach on TB treatment outcomes.