Browsing by Author "Meiring, Michelle"

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    Open Access
    Assessing palliative care policies in Africa: Implication for paediatric palliative care
    (2020) Ngowi, Epiphania; Shung King, Maylene; Meiring, Michelle
    Around the world, there are millions of children who need palliative care from the moment they are diagnosed with life-threatening and life-limiting illnesses, yet very few children have access to palliative care services. In many African countries, where palliative care is still new, many children with chronic illnesses continue to experience needless pain and suffering. The World Health Assembly Resolution 67.19 made a clear call for governments around the world to implement palliative care policies. Such policies should support the “comprehensive strengthening of health systems to integrate evidence-based, costeffective and equitable palliative care services in the continuum of care, across all levels of care”. However, despite these frequent calls, no specific policies target the provision of paediatric palliative care in Africa. This dissertation consists of three parts. Part A is the study protocol, which consists of the introduction and the study methodology. The study is qualitative in nature and it adopted the Walt and Gilson framework for extraction of data and analysis of palliative care policies in Africa. The study used publicly available policy documents, which were identified and obtained from government websites, international agencies' websites and through communication with palliative care experts. An excel spreadsheet was used to extract data, which was analysed thematically. Part B is a literature review of available published and unpublished work pertaining to paediatric palliative care in Africa. It provides the historical background of palliative care and defines palliative care and paediatric palliative care as well as exploring the general literature on paediatric palliative care, and the evidence on the existence of palliative care policies in Africa. Part C is a journal manuscript. It follows the structure and guidelines of the journal of the Health Policy and Planning. The manuscript begins with introduction and the study methods. Further, the study used publicly available policy documents on palliative care in Africa published from 2002 until 2018. An appropriate conceptual framework was chosen, and the results of the policy analysis are provided and followed by the discussion section and conclusions. The study findings indicate that few palliative care policies exist in Africa, and children's palliative care needs are not adequately included and addressed. The findings further show that there was no single policy targeting paediatric palliative care, and children were included among the larger population. As such, palliative care needs were not sufficiently addressed. Only three policies (South Africa, Zimbabwe, and Malawi) clearly address paediatric palliative care needs. The study, therefore, argues that for children with life threatening and life-limiting conditions to be free from pain, African governments need to formulate specific policies that will guide the provision of paediatric palliative care. This study is likely contribute to policy making processes, acts as a reference document for academics and students and provides an advocacy tool for activists, nongovernmental organizations (NGOs), and civil society organizations (CSOs) working on children's welfare and human rights issues more broadly. Further, the findings of the study may contribute to formulating specific palliative care policies for children, particularly in African countries that lack such policies.
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    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.
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    Family experiences and viewpoints of palliative and supportive care for children with cancer: Can we do better?
    (2017) du Plessis, Johannes; Stones, D K; Meiring, Michelle
    Background: The palliative and supportive care needs of children with cancer and their families are unique and require special attention. Children and their families in Africa facing lifethreatening/ life-limiting diseases have unique needs and have the right to achieve effective and evidence-based care. Development of appropriate services sensitive to the needs of families and based on observed evidence has become more and more recognized. As an introduction to develop and improve supportive and palliative care services for children with cancer, families were questioned regarding their experiences and suggestions for improvements. Methods: Sixteen family members of children with cancer and treated at Universitas Academic Hospital, Bloemfontein, South Africa, were questioned regarding their children's standard oncology and supportive/palliative care. Their responses were studied and repeating themes were identified. Results: A number of areas of need were identified: erratic psychosocial support, minimal financial support, poor parental access to basic needs and food provision, preventable errors in procedures and lack of sibling support. Staff were also not always sufficiently equipped to attend to palliative care patients. Conclusions: Supportive and palliative care for children with cancer needs to be improved. Family members are a valuable resource and the interviews identified a number of themes, valuable to consider in the expansion of a supportive/palliative care service. The intension of the study was to create the awareness that by making small and affordable changes, the quality of care that children and families receive can be improved.
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    How well is paediatric pain managed in a private hospital in London? An evaluation of paediatric healthcare providers' pain management practices and parents' perception of pain management in their hospitalized children
    (2018) Oladoyinbo, Abidemi; Meiring, Michelle; Luck, Patricia
    Background: Optimal pain relief in a healthcare setting relies heavily on actual pain management practices rather than just on the healthcare practitioner’s knowledge of this. Understanding parents' perceptions of pain management practices are very important in identifying areas of concerns and in developing plans and strategies for improvement. Although research has examined these practices in various public healthcare settings, no research has been carried out within the private sector. Aims/Objectives: This study aims to evaluate pain management practices of paediatric healthcare providers and parental perception of these practices within a private hospital in London. Its main objectives to evaluate paediatrics health care providers’ pain management practices against the recommended standard within the UK. Methods: Using a Mixed method study design, 10 healthcare providers were observed and data was collected on pain management of 10 children over a period of 10 months (14 shifts). Interviews were also conducted with the corresponding 10 parents/caregivers of children involved in the study. Results: The median age of child participant and health care providers were 3 and 32years respectively. Greater than half of the parent participants were Arabic while there was a fairly equal representation of white, Asian and black racial distribution among the health care providers. Although all healthcare provider could speak English, almost half of them could speak other languages, while greater than half of parent participant speaks Arabic. Pain assessment is routinely documented when the vital signs are checked, but recorded score may not correlate with the actual pain score of the child. This is due to lack of consistency and appropriate use of a validated pain tool for age. A potential lack of knowledge on how to utilise the various assessment tools may also contribute. Most parents were satisfied with the pain management of their child. They did indicate, however, the need to improve healthcare providers’ competencies and knowledge in the use of pain relieving devices as well as in the provision of supportive information for parents. Conclusion: Overall, pain management practices in Harley Street were found to be satisfactory. Parental satisfaction with care provided could be attributed to the team approach utilised by healthcare providers in pain management. It is recommended that Harley Street Clinic needs to implement a paediatric specific pain management guidelines with regular auditing of pain management practices in the hospital. A review of pain management information given to parents of cardiac patients, as well as the provision of pain management information brochure in relevant languages may help improve care.
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    An investigation of the symptom burden of paediatric cardiology outpatients in Blantyre, Malawi: The patient perspective
    (2018) Huwa, Cornelius Kondwani; Meiring, Michelle; Bates, Jane M
    Introduction: Children suffering from cardiac disease present with an increasing burden of symptoms throughout the trajectory of their disease. There is little research describing symptom burden among children with cardiac disease in resource-limited settings in general and looking particularly from the patients' perspective. Social, spiritual and psychological symptom burden and challenges are rarely examined in literature. This study was designed to explore the symptom burden of children with cardiac disease by engaging the children in a discussion about their illness with reference to their social (family and school), physical, spiritual and psychological lives. This was done with the understanding that palliative care improves quality of life through alleviation of distressing symptoms. AIM: To determine symptom burden and palliative care needs of paediatric cardiology outpatients from the perspective of the patient. OBJECTIVES: 1. To describe the common physical symptoms of the children coming to cardiology clinic 2. To describe the psychosocial burden of paediatric cardiology patients in outpatient clinic 3. To describe the spiritual symptoms burden of paediatric cardiology patients in outpatient clinic Methods: This was a cross-sectional descriptive study, using qualitative methodology with semi-structured interviews. The study had twelve participants (aged between 8 years and 18 years) and was conducted at Queen Elizabeth Central Hospital (QECH)'s Paediatric Cardiac Clinic. Findings: Pain was a common physical symptom in all the participants. Only 2 participants received analgesia aimed at treating the pain. Other common physical symptoms were breathlessness, fatigue, vomiting and insomnia. Schooling challenges were common with 7 of the participants either repeating a class or starting school at an older age. Availability of a loving and caring family provided an enabling environment. Schools which had been informed of the cardiac condition of the participants were found to be helpful in supporting the children. Faith and religion were found to be important to most of the participants in coping with the disease. Conclusion: Children with cardiac disease have physical, social, psychological and spiritual challenges and symptoms. To alleviate the burden of symptoms, health workers must pay attention and aim to treat all possible reported symptoms and provide support to families. Living with a chronic cardiac condition affects the whole being of a child including relationships, schooling, family and faith.
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    Paediatric Palliative Care - describing patient needs and the experiences of caregivers and health care workers in a Cape Town Paediatric Intermediate Care Facility
    (2021) Daniels, Alexandra; Meiring, Michelle; Ganca, Linda; Gwyther, Liz
    Aim: The study describes the population (and care needs) of children admitted to the facility, the experiences of their primary caregivers and the health care workers caring for them. Methodology: This was a descriptive study that utilised elements of both prospective and crosssectional design. The health records of 25 patients were reviewed and matched caregivers partook in a three-part questionnaire. Focus group discussions were conducted with 15 health care workers at a single point during the study. Results: The majority (48%) of patients were referred to the facility for transitional care, the average length of stay was calculated at 97 days and pain was identified as the most prevalent symptom. Despite significant degrees of worry, most primary caregivers derived emotional strength and spiritual meaning from the experience of caring for their child. Health care workers valued access to training, appropriate resources, and support to meet the challenge of caring for children and families with specific care needs. Conclusion/Recommendations: These results conclude that children living with LL or LTC's and their families have complex holistic care needs that require a comprehensive approach. In order to best meet these needs, at ICF level, health care workers need to be assured access to a range of skills, resources and support.
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    Paediatric Palliative Care - describing patient needs and the experiences of caregivers and health care workers in a Cape Town Paediatric Intermediate Care Facility
    (2022) Daniels, Alexandra Jacqueline; Meiring, Michelle; Ganca, Linda; Gwyther, Liz
    Introduction: Palliative care has the potential to improve the quality of life for children living with LL or LTC's and their families. However, in the South African context, little is known about the specific care needs of these children and the experiences of caregivers and health care workers during the child's stay at an intermediate / step down facility. Aim: The study describes the population (and care needs) of children admitted to the facility, the experiences of their primary caregivers and the health care workers caring for them. Methodology: This was a descriptive study that utilised elements of both prospective and cross-sectional design. The health records of 25 patients were reviewed and matched caregivers partook in a three-part questionnaire. Focus group discussions were conducted with 15 health care workers at a single point during the study. Results: The majority (48%) of patients were referred to the facility for transitional care, the average length of stay was calculated at 97 days and pain was identified as the most prevalent symptom. Despite significant degrees of worry, most primary caregivers derived emotional strength and spiritual meaning from the experience of caring for their child. Health care workers valued access to training, appropriate resources and support to meet the challenge of caring for children and families with specific care needs. Conclusion/Recommendations: These results conclude that children living with LL or LTC's and their families have complex holistic care needs that require a comprehensive approach. In order to best meet these needs, at ICF level, health care workers need to be assured access to a range of skills, resources and support.
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    To evaluate the support required by staff in the Paediatric Unit in Dora Nginza Hospital in Port Elizabeth, South Africa in caring for children with life limiting and life threatening illnesses
    (2012) Ureche, Florentina; Meiring, Michelle
    This research aimed to explore the perceived needs of support required by paediatric staff caring for children with LL and LTIs in the Paediatric Department in DNH and set out the following objectives: 1) To identify the need for educational support; 2) To explore the emotional impact on Health Care Professionals HCPs caring for children with LL and LTI; 3) To identify the kind of support required for staff in order to offer the best possible care to these paediatric patients and their families.
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    Use of palliative chemotherapy in South Africa: National survey of paediatric oncologists and experience in a single unit
    (University of Cape Town, 2020) Büchner, Ané; Meiring, Michelle; Davidson, Alan
    BACKGROUND: Palliative chemotherapy is cancer-directed therapy, which aims at stopping or slowing down the progression of the malignancy even though it may not have any potential for remission or cure. In South Africa, delayed diagnosis of childhood cancer is a common problem for a variety of reasons including lack of health care facilities, transport, information about the disease and delayed presentation due to traditional healer visits or other cultural issues. In patients who present with advanced cancer, or in patients with relapsed cancer without realistic hope of cure, palliative chemotherapy can be offered in an attempt to manage symptoms, improve quality of life and prolong meaningful survival. OBJECTIVES: This research study evaluated South African paediatric oncologists' perspectives and practices regarding the use of chemotherapy in patients with cancer with no realistic hope of cure. The second part of the study described the use of palliative chemotherapy in patients who received treatment at the Steve Biko Academic Hospital Paediatric oncology unit. DESIGN & METHOD: An online survey was conducted among paediatric oncologists in South Africa. The main aims of the questionnaire were to assess paediatric oncologists' considerations around the use of palliative chemotherapy, and then focus on the most recent patients treated with palliative chemotherapy. For the second part of the study, a file review was done of deceased patients who died in the period from January 2012 to December 2018 and who had received palliative chemotherapy as part of their cancer management. We reviewed diagnoses, palliative chemotherapy regimens, timing of initiation and stopping palliative chemotherapy, and whether end of life decisions and discussions were documented. RESULTS: A total of 41 participants completed the survey, giving a response rate of 89%. The majority of the paediatric oncologists were either neutral or agreed that palliative chemotherapy should be considered. The most important treatment aim was to improve quality of life of the patient (92.7% of respondents). The most important considerations when prescribing palliative chemotherapy was to minimise toxicity of the chemotherapy regimen (4.56 mean, SD=0.5 utilising a 5 point scale where 1=not important to 5=very important), and the effectiveness of the chemotherapy (4.37; SD=0.48). Only 19.5% of patients received treatment primarily because parents requested it. According to the oncologists polled, the key considerations were largely achieved in the most recent patient treated with palliative chemotherapy. Individual opinions and preferences concerning recommending palliative chemotherapy differ between paediatric oncologists. Of the 305 patient deaths recorded in the study period, a total of 74 patients had received palliative chemotherapy and were included in the file review. The most common diagnoses were neuroblastoma (18.2%), retinoblastoma (15.6%) and osteosarcoma (14.3%). At the time of diagnosis, the median age of the patients was 6.0 years (range 0.3 to 17.6 years). In 47 patients (63.5%) the disease was deemed incurable at first diagnosis and palliative chemotherapy given from the onset of treatment, while 27 patients (36.5%) were given palliative chemotherapy at relapse. The median time from last palliative chemotherapy to death was 30 days (range 0-742 days). The main documented aim of palliative chemotherapy was to improve symptom control (97.3%) while parents' opinion played an important role in 32.9% of cases. About half of the patients (41 of 74, 55.4%) had documentation of symptomatic improvement. CONCLUSION: Although the overall attitude towards the use of palliative chemotherapy is positive, there is great inter-individual variation between oncologists in opinions and experience. The lack of empirical data to justify recommendations about palliative chemotherapy remains a problem, and the researcher hopes that this study will spark productive discussion and planning towards more structured use of palliative chemotherapy in children with cancer in South Africa. This study shows that many decisions around end of life care and decision-making could be better researched using a quantitative, prospective, interview-based approach. Repeated measurements of the child and family's quality of life and its associations with palliative chemotherapy should be a research priority in future.