Browsing by Subject "Palliative care"

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    Assessing the palliative care needs of end stage kidney disease patients in a tertiary hospital in Nigeria
    (2022) Adebayo, Adetayo Jolade; Namane, Mosedi; Samuel Ajayi
    Background: Worldwide, end-stage kidney disease (ESKD) is associated with high morbidity and mortality. Currently, the incidence of ESKD in Nigeria is about 1.6% -12.4% and is higher amongst 25-45 year-olds, implying that ESKD indirectly affects the economic productivity of the nation negatively. ESKD is a condition that may progresses rapidly from a chronic to a terminal phase and is responsible for about 2-3% of all hospital admission worldwide while in Nigeria the proportion of admissions is as high as 10%. This high symptom and disease burden of ESKD warrants implementation of a palliative care program that is able to assess and manage the needs of patients with this condition and to support their families. Methods: A descriptive study was undertaken to assess the palliative care needs of patients. A random sample of 110 ESKD patients attending University College Hospital (UCH) Ibadan were interviewed using published standardized and validated questionnaire over a period of 3-months. The questionnaire was a combination of the Integrated Palliative Outcome Scale-Renal Patient Version (IPOS-R) and Hope Spiritual Assessment Tool (HOPE). The socio-demographic characteristics comprising of gender, age, place of residence and knowledge of palliative care were determined. IPOS-R was used to explore the patients' symptom-burden, psychological and social palliative care needs and quality of life while the HOPE was used to explore patients' spiritual needs. Ethical approval was obtained from the relevant organizations. Data was analyzed using the IBM SPSS version 23.0. Results: More than half of the participants (57%) were female, 92% had co-morbidities, 86% had formal education, 60% were self-employed and their median age was 43.5years. Half (51%) reported experiencing severe symptoms and poor quality of life. More than half (50%) of the patients complained of shortness of breath, pain, general body malaise, sore mouth, restless with more than 80% reporting nausea, poor appetite, difficulty in sleeping and weakness. Fifty-three percent reported experiencing anxiety most of the time and reported that their families and friends were worrying about them. The majority (98%) said their source of hope was God. Most patients (93%) said they were not aware of palliative care medicine. Conclusion: There is a huge need for palliative care for patients with ESKD in Nigeria. This study has developed a framework that can be used by a palliative care team, in collaboration with nephrologists, to provide a person-centered care for these patients and their families.
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    Regional differences in prevalence of HIV-1 discordance in Africa and enrollment of HIV-1 discordant couples into an HIV-1 prevention trial
    (Public Library of Science, 2008) Lingappa, Jairam R; Lambdin, Barrot; Bukusi, Elizabeth Ann; Ngure, Kenneth; Kavuma, Linda; Inambao, Mubiana; Kanweka, William; Allen, Susan; Kiarie, James N; Makhema, Joseph
    BACKGROUND: Most HIV-1 transmission in Africa occurs among HIV-1-discordant couples (one partner HIV-1 infected and one uninfected) who are unaware of their discordant HIV-1 serostatus. Given the high HIV-1 incidence among HIV-1 discordant couples and to assess efficacy of interventions for reducing HIV-1 transmission, HIV-1 discordant couples represent a critical target population for HIV-1 prevention interventions and prevention trials. Substantial regional differences exist in HIV-1 prevalence in Africa, but regional differences in HIV-1 discordance among African couples, has not previously been reported. METHODOLOGY/PRINCIPAL FINDINGS: The Partners in Prevention HSV-2/HIV-1 Transmission Trial ("Partners HSV-2 Study"), the first large HIV-1 prevention trial in Africa involving HIV-1 discordant couples, completed enrollment in May 2007. Partners HSV-2 Study recruitment data from 12 sites from East and Southern Africa were used to assess HIV-1 discordance among couples accessing couples HIV-1 counseling and testing, and to correlate with enrollment of HIV-1 discordant couples. HIV-1 discordance at Partners HSV-2 Study sites ranged from 8-31% of couples tested from the community. Across all study sites and, among all couples with one HIV-1 infected partner, almost half (49%) of couples were HIV-1 discordant. Site-specific monthly enrollment of HIV-1 discordant couples into the clinical trial was not directly associated with prevalence of HIV-1 discordance, but was modestly correlated with national HIV-1 counseling and testing rates and access to palliative care/basic health care (r = 0.74, p = 0.09). Conclusions/Significance HIV-1 discordant couples are a critical target for HIV-1 prevention in Africa. In addition to community prevalence of HIV-1 discordance, national infrastructure for HIV-1 testing and healthcare delivery and effective community outreach strategies impact recruitment of HIV-1 discordant couples into HIV-1 prevention trials.
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    “Small small interventions, big big roles”- a qualitative study of patient, care-giver and health-care worker experiences of a palliative care programme in Kerala, India
    (BioMed Central, 2019-02-04) Philip, Rekha R; Venables, Emilie; Manima, Abdulla; Tripathy, Jaya P; Philip, Sairu
    Background Home-based palliative care is an essential resource for many communities. We conducted a qualitative study to explore perceptions of a home-based palliative care programme in Kerala, India, from the perspective of patients, their care-givers and the doctors, nurses and volunteers running the intervention. Methods A descriptive qualitative study was carried out. One focus group discussion (FGD) was conducted with patients (n = 8) and two with male and female volunteers (n = 12); and interviews were conducted with doctors (n = 3), nurses (n = 3) and care-givers (n = 14). FGDs and interviews were conducted in Malayalam, audio-recorded, transcribed verbatim and translated into English. Transcripts were coded and analysed using manual content analysis. Results Doctors, nurses and volunteers have interdependent roles in providing palliative care to patients, including mentorship, training, patient care and advocating for patient needs. Volunteers also considered themselves to be mediators between families and the programme. Care-givers were mainly female and were caring for relatives. They have physically demanding, psychologically stressful and socially restrictive experiences of care-giving. They felt that the programme facilitated their role as care-givers by giving them training and support. Patients with long standing illnesses felt that the programme enabled them to become more independent and self-reliant. The local community supports the programme through economic contributions and offering practical assistance to patients. Conclusion The salient features of this programme include the provision of regular holistic care through a team of doctors, nurses and patients. The programme was perceived to have improved the lives of patients and their care-givers. The involvement of volunteers from the local community was perceived as a strength of the programme, whilst simultaneously being a challenge.
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    The utility of a shortened palliative care screening tool to predict death within 12 months – a prospective observational study in two south African hospitals with a high HIV burden
    (2019-11-13) Raubenheimer, Peter J; Day, Cascia; Abdullah, Faried; Manning, Katherine; Cupido, Clint; Peter, Jonny
    Abstract Background Timely identification of people who are at risk of dying is an important first component of end-of-life care. Clinicians often fail to identify such patients, thus trigger tools have been developed to assist in this process. We aimed to evaluate the performance of a identification tool (based on the Gold Standards Framework Prognostic Indicator Guidance) to predict death at 12 months in a population of hospitalised patients in South Africa. Methods Patients admitted to the acute medical services in two public hospitals in Cape Town, South Africa were enrolled in a prospective observational study. Demographic data were collected from patients and patient notes. Patients were assessed within two days of admission by two trained clinicians who were not the primary care givers, using the identification tool. Outcome mortality data were obtained from patient folders, the hospital electronic patient management system and the Western Cape Provincial death registry which links a unique patient identification number with national death certificate records and system wide electronic records. Results 822 patients (median age of 52 years), admitted with a variety of medical conditions were assessed during their admission. 22% of the cohort were HIV-infected. 218 patients were identified using the screening tool as being in the last year of their lives. Mortality in this group was 56% at 12 months, compared with 7% for those not meeting any criteria. The specific indicator component of the tool performed best in predicting death in both HIV-infected and HIV-uninfected patients, with a sensitivity of 74% (68–81%), specificity of 85% (83–88%), a positive predictive value of 56% (49–63%) and a negative predictive value of 93% (91–95%). The hazard ratio of 12-month mortality for those identified vs not was 11.52 (7.87–16.9, p < 0.001). Conclusions The identification tool is suitable for use in hospitals in low-middle income country setting that have both a high communicable and non-communicable disease burden amongst young patients, the majority under age 60.
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    Twenty years of home-based palliative care in Malappuram, Kerala, India: a descriptive study of patients and their care-givers
    (BioMed Central, 2018-02-14) Philip, Rekha Rache; Philip, Sairu; Tripathy, Jaya Prasad; Manima, Abdulla; Venables, Emilie
    Background: The well lauded community-based palliative care programme of Kerala, India provides medical and social support, through home-based care, for patients with terminal illness and diseases requiring long-term support. There is, however, limited information on patient characteristics, caregivers and programme performance. This study was carried out to describe: i) the patients enrolled in the programme from 1996 to 2016 and their diagnosis, and ii) the care-giver characteristics and palliative care support from nurses and doctors in a cohort of patients registered during 2013–2015. Methods: A descriptive study was conducted in the oldest community-based palliative clinic in Kerala. Data were collected from annual patient registers from 1996 to 2016 and patient case records during the period 2013–2015. Results: While 91% of the patients registered in the clinic in 1996 had cancer, its relative proportion came down to 32% in 2016 with the inclusion of dementia-related illness (19%) cardiovascular accidents (17%) and severe mental illness (5%).Among patients registered during 2013–15, the median number of home visits from nurses and doctors in 12 months were five and one respectively. In the same cohort, twelve months’ post-enrolment, 56% of patients died, 30% were in continuing in active care and 7% opted out. Those who opted out of care were likely to be aged < 60 years, received one or less visit annually from a doctor or have a serious mental illness. 96% of patients had a care-giver at home, 85% of these care-givers being female. Conclusions: The changing dynamics over a 20-year period of this palliative care programme in Kerala, India, highlights the need for similar programmes to remain flexible and adapt their services in response to a growing global burden of Non Communicable Diseases. While a high death rate is expected in this population, the high proportion of patients choosing to stay in the programme suggests that home-based care is valued within this particular group. A diverse range of clinical and psycho-social support skills are required to assist families and their caregivers when caring for a cohort such as this one.
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    Wellbeing among sub-Saharan African patients with advanced HIV and/or cancer: an international multicentred comparison study of two outcome measures
    (BioMed Central Ltd, 2014) Harding, Richard; Selman, Lucy; Ali, Zippy; Powell, Richard; Namisango, Eve; Mwangi-Powell, Faith; Gwyther, Liz; Gikaara, Nancy; Higginson, Irene; Siegert, Richard
    BACKGROUND: Despite the high mortality rates of HIV and cancer in sub-Saharan Africa, there are few outcome tools and no comparative data across conditions. This study aimed to measure multidimensional wellbeing among advanced HIV and/or cancer patients in three African countries, and determine the relationship between two validated outcome measures. METHODS: Cross-sectional self-reported data from palliative care populations in Kenya, Uganda and South Africa using FACIT-G+Pal and POS measures. RESULTS: Among 461 participants across all countries, subscale "social and family wellbeing" had highest (best) score. Significant country effect showed lower (worse) scores for Uganda on 3 FACIT G subscales: Physical, Social + family, and functional. In multiple regression, country and functional status accounted for 21% variance in FACIT-Pal. Worsening functional status was associated with poorer POS score. Kenyans had worse POS score, followed by Uganda and South Africa. Matrix of correlational coefficients revealed moderate correlation between the POS and FACIT-Pal core scale (0.60), the FACIT-G and POS (0.64), and FACIT-G+Pal with POS (0.66). CONCLUSIONS: The data reveal best status for family and social wellbeing, which may reflect the sample being from less individualistic societies. The tools appear to measure different constructs of wellbeing in palliative care, and reveal different levels of wellbeing between countries. Those with poorest physical function require greatest palliative and supportive care, and this does not appear to differ according to diagnosis.