Browsing by Author "Dinat, Natalya"
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- ItemOpen AccessExploring the meanings of death and dying and the burden of living with HIV/AIDS in Soweto, a South African township(2005) Dinat, Natalya; Gwyther, LizThe main study purpose was to inform a proposed model of palliative care in Soweto, the N'doro model, to identify an acceptable approach for a palliative care service in Soweto, and find out which issues were of concern to the people who would be potentially receiving these services. The aim is to understand meaning of death and dying and the burden of living with HIV/AIDS.
- ItemOpen AccessAn investigation of the beliefs, attitudes and practice of health care workers towards the use of oral morphine in the palliative care management of HIV/AIDS and cancer patients in the Southern Region of Malawi(2008) Bates, Jane M; Gwyther, Liz; Dinat, Natalya[Background] Palliative care has been highlighted as an urgent need for patients with both HIV/AIDS and cancer in sub-Saharan Africa. Morphine is considered by the WHO as the drug of choice for severe pain in cancer. Pain is common in people with HIV/AIDS, though it is frequently unrecognised or poorly treated. Health workers fears about morphine have been reported to be a barrier to patients' accessing necessary pain medication in studies from Africa as well as other parts of the world. [ Methods ] Semi-structured interviews were conducted with a total of fifteen nurses, clinicians, health service managers and pharmacy staff at five sites in the Southern Region of Malawi between November 2007 and February 2008. Study sites were randomly selected from groupings representing the different hospital institutions which exist in the region (district and central government institutions and mission hospitals). Interviews were conducted in either English or Chichewa. After translation, interview data was intensively reviewed by the researcher and emerging themes were identified. [ Results ] Three main themes were identified during the interviews. Firstly the availability of oral morphine, secondly concerns about opiate misuse and thirdly the need 6 for education and training amongst health workers and community members. Respondents understood that morphine was a strong pain killer, which they thought was useful and should be more widely available for patients with both HIV/AIDS and cancer related problems, though reported stock outs at their institutions were common. Oral morphine was available at only two of the institutions visited at the time of the interviews. A third of respondents were unable to supply information on correct practises for storage and reporting of morphine. Concerns were expressed about making oral morphine available to patients at home. Fears about addiction (either amongst patients or health workers) directly affected their prescribing practise, as respondents reported that they may either prescribe lower doses or only prescribe morphine late in the course of the illness to try to reduce the risk of addiction. [ Conclusions and recommendations ] Many of the health workers requested improved availability of oral morphine to treat patients with HIV/AIDS and cancer with severe pain. However other beliefs, attitudes and practises of health workers in the Southern Region of Malawi present major barriers to timely access to oral morphine for patients in need. Further education, training and hands on experience are required for health care workers (including pharmacy staff). Advocacy should be intensified at national and international level towards the development of appropriate policies and supply chains to improve the availability of morphine for medical purposes.
- ItemOpen AccessQuality of life among patients receiving palliative care in South Africa and Uganda: a multi-centred study(BioMed Central Ltd, 2011) Selman, Lucy; Higginson, Irene; Agupio, Godfrey; Dinat, Natalya; Downing, Julia; Gwyther, Liz; Mashao, Thandi; Mmoledi, Keletso; Moll, Tony; Sebuyira, Lydia; Ikin, Barbara; Harding, RichardBACKGROUND:Quality of life (QOL) is a core outcome of palliative care, yet in African settings there is a lack of evidence on patients' levels of QOL. We aimed to describe QOL among patients with incurable, progressive disease receiving palliative care in South Africa and Uganda, to compare QOL in cancer and HIV, to determine how domains of QOL correlate with overall QOL, and compare levels of QOL in this population with those in other studies using the same tool. METHODS: A cross-sectional survey was conducted using the Missoula Vitas Quality of Life Index (MVQOLI), a 26-item QOL questionnaire with five subscales (Function, Symptom, Interpersonal, Well being, Transcendent) covering physical, social, psychological and spiritual domains and one global QOL item. One item in each subscale assesses the subjective importance of the domain on a score from 1 (least important) to 5 (most important), used to weight the contribution of the subscale towards the Total QOL score. The tool was translated into 6 languages and administered to consecutively recruited patients at four facilities in South Africa and one in Uganda. RESULTS: 285 patients were recruited, with a mean age of 40.1; 197 (69.1%) were female. Patients' primary diagnoses were HIV (80.7%), cancer (17.9%) and other conditions (1.4%). The mean global QOL score was 2.81 (possible range 0 (worst) to 5 (best)); mean Total score 17.32 (possible range 0 to 30). Patients scored most poorly on Function (mean 0.21), followed by Well being (2.59), Symptoms (5.38), Transcendent (5.50), Interpersonal (9.53) (possible range for subscale scores -30 to 30). Most important to patients were: close relationships (mean 4.13), feeling at peace (4.12), sense of meaning in life (4.10), being active (3.84), physical comfort (2.58). Cancer patients were predominantly recruited at three of the sites; hence comparison with HIV-infected patients was restricted to these sites. HIV+ patients (n = 115) scored significantly worse than cancer patients (n = 50) on Well being (Z = -2.778, p = 0.005), Transcendence (Z = -2.693, p = 0.007) and Total QOL (Z = -2.564, p = 0.01). Global QOL score was most weakly correlated with Total QOL (r = 0.37) and the Transcendent subscale was most highly correlated (r = 0.77) (both p < 0.001). Patients receiving palliative care in South Africa and Uganda exhibited significantly poorer QOL compared to similar populations in the USA. CONCLUSIONS: Feeling at peace and having a sense of meaning in life were more important to patients than being active or physical comfort, and spiritual wellbeing correlated most highly with overall QOL. It is therefore vital to identify and meet the psychological and spiritual care needs of patients, as well as to assess and treat pain and other symptoms. Our finding that patients scored most poorly on the Function domain warrants further research.
- ItemOpen AccessSelf-report measurement of pain & symptoms in palliative care patients: a comparison of verbal, visual and hand scoring methods in Sub-Saharan Africa(BioMed Central, 2014-08-02) Blum, David; Selman, Lucy E; Agupio, Godfrey; Mashao, Thandi; Mmoledi, Keletso; Moll, Tony; Dinat, Natalya; Gwyther, Liz; Sebuyira, Lydia M; Ikin, Barbara; Downing, Julia; Kaasa, Stein; Higginson, Irene J; Harding, RichardBackground: Despite a high incidence of life-limiting disease, there is a deficit of palliative care outcome evidence in sub-Saharan Africa. Providers of end of life care call for appropriate measurement tools. The objective is to compare four approaches to self-report pain and symptom measurement among African palliative care patients completing the African Palliative Care Association African Palliative Outcome Scale (APCA African POS). Methods: Patients were recruited from five services (4 in South Africa and 1 in Uganda). Research nurses cross-sectionally administered POS pain and symptom items in local languages. Both questions were scored from 0 to 5 using 4 methods: verbal rating, demonstrating the score using the hand (H), selecting a face on a visual scale (F), and indicating a point on the Jerrycan visual scale (J). H, F and J scores were correlated with verbal scores as reference using Spearman’s rank and weighted Kappa. A Receiver Operating Characteristic (ROC) analysis was performed. Results: 315 patients participated (mean age 43.5 years, 69.8% female), 71.1% were HIV positive and 35.6% had cancer, 49.2% lived in rural areas. Spearman’s rank correlations for pain scores were: H: 0.879, F: 0.823, J: 0.728 (all p < 0.001); for symptoms H: 0.876, F: 0.808, J: 0.721 (all p < 0.001). Weighted Kappa for pain was H: 0.798, F: 0.719 J: 0.548 and for symptoms: H: 0.818, F: 0.718, J: 0.571. There was lower agreement between verbal and both hand and face scoring methods in the Ugandan sample. Compared to the verbal scale the accuracy of predicting high pain/symptoms was H > F > J (0.96–0.89) in ROC analysis. Conclusions: Hands and faces scoring methods correlate highly with verbal scoring. The Jerrycan method had only moderate weighted Kappa. POS scores can be reliably measured using hand or face score.
- ItemOpen AccessValidation of a core outcome measure for palliative care in Africa: the APCA African Palliative Outcome Scale(BioMed Central Ltd, 2010) Harding, Richard; Selman, Lucy; Agupio, Godfrey; Dinat, Natalya; Downing, Julia; Gwyther, Liz; Mashao, Thandi; Mmoledi, Keletso; Moll, Tony; Sebuyira, Lydia; Panjatovic, Barbara; Higginson, IreneBACKGROUND: Despite the burden of progressive incurable disease in Africa, there is almost no evidence on patient care or outcomes. A primary reason has been the lack of appropriate locally-validated outcome tools. This study aimed to validate a multidimensional scale (the APCA African Palliative Outcome Scale) in a multi-centred international study. METHODS: Validation was conducted across 5 African services and in 3 phases: Phase 1. Face validity: content analysis of qualitative interviews and cognitive interviewing of POS; Phase 2. Construct validity: correlation of POS with Missoula-Vitas Quality of Life Index (Spearman's rank tests); Phase 3. Internal consistency (Cronbach's alpha calculated twice using 2 datasets), test-retest reliability (intraclass correlation coefficients calculated for 2 time points) and time to complete (calculated twice using 2 datasets). RESULTS: The validation involved 682 patients and 437 family carers, interviewed in 8 different languages. Phase 1. Qualitative interviews (N = 90 patients; N = 38 carers) showed POS items mapped well onto identified needs; cognitive interviews (N = 73 patients; N = 29 carers) demonstrated good interpretation; Phase 2. POS-MVQoLI Spearman's rank correlations were low-moderate as expected (N = 285); Phase 3. (N = 307, 2nd assessment mean 21.2 hours after first, SD 7.2) Cronbach's Alpha was 0.6 on both datasets, indicating expected moderate internal consistency; test-retest found high intra-class correlation coefficients for all items (0.78-0.89); median time to complete 7 mins, reducing to 5 mins at second visit. CONCLUSIONS: The APCA African POS has sound psychometric properties, is well comprehended and brief to use. Application of this tool offers the opportunity to at last address the omissions of palliative care research in Africa.