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Study protocol for a single-centre observational study of household wellbeing and poverty status following a diagnosis of advanced cancer in Blantyre, Malawi - 'Safeguarding the Family' study.

ABSTRACT: Background: Many households in low-and-middle income countries face the additional burden of crippling out-of-pocket expenditure when faced with a diagnosis of life-limiting illness. Available evidence suggests that receipt of palliative care supports cost-savings for cancer-affected households. This study will explore the relationship between receipt of palliative care, total household out-of-pocket expenditure on health and wellbeing following a first-time diagnosis of advanced cancer at Queen Elizabeth Central Hospital in Blantyre, Malawi. Protocol: Patients and their primary family caregivers will be recruited at the time of cancer diagnosis. Data on healthcare utilisation, related costs, coping strategies and wellbeing will be gathered using new and existing questionnaires (the Patient-and-Carer Cancer Cost Survey, EQ-5D-3L and the Integrated Palliative Care Outcome Score). Surveys will be repeated at one, three and six months after diagnosis. In the event of the patient's death, a brief five-item questionnaire on funeral costs will be administered to caregivers not less than two weeks following the date of death. Descriptive and Poisson regression analyses will assess the relationship between exposure to palliative care and total household expenditure from baseline to six months. A sample size of 138 households has been calculated in order to detect a medium effect (as determined by Cohen's f 2=0.15) of receipt of palliative care in a regression model for change in total household out-of-pocket expenditure as a proportion of annual household income. Ethics and dissemination: The study has received ethical approval. Results will be reported using STROBE guidelines and disseminated through scientific meetings, open access publications and a national stakeholder meeting. Conclusions: This study will provide data on expenditure for healthcare by households affected by advanced cancer in Malawi. We also explore whether receipt of palliative care is associated with a reduction in out-of-pocket expenditure at household level.

SUBMITTER: Bates MJ

PROVIDER: S-EPMC7047920 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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Study protocol for a single-centre observational study of household wellbeing and poverty status following a diagnosis of advanced cancer in Blantyre, Malawi - <i>'Safeguarding the Family'</i> study.

Bates Maya Jane MJ Muula Adamson A Gordon Stephen B SB Henrion Marc Y R MYR Tomeny Ewan E MacPherson Peter P Squire Bertel B Niessen Louis L

Wellcome open research 20200302

<b>Background</b>: Many households in low-and-middle income countries face the additional burden of crippling out-of-pocket expenditure when faced with a diagnosis of life-limiting illness. Available evidence suggests that receipt of palliative care supports cost-savings for cancer-affected households. This study will explore the relationship between receipt of palliative care, total household out-of-pocket expenditure on health and wellbeing following a first-time diagnosis of advanced cancer a ...[more]

PMID: 32161817

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Project description:INTRODUCTION:Cancer and other life-limiting non-communicable diseases are on the increase in Africa affecting younger populations frequently diagnosed at an advanced stage of disease. The United Nations Sustainable Development Goal 3 aims for 'healthy life and wellbeing for all at all ages', though there is a limited understanding of wellbeing particularly from patients' and families' perspectives in these populations. Palliative care is an approach which aims to improve the quality of life for patients and families affected by life-limiting disease, though access to palliative care has been described as an issue which is 'largely ignored' on the global health agenda. The aim of this Photovoice study was to explore patient and family perspectives of wellbeing and the contribution of palliative care following a diagnosis of advanced cancer in Blantyre, Malawi. METHODS:Between November 2016 and February 2017, 13 co-researchers (6 patients receiving palliative care for advanced cancer and 7 un-paid family caregivers) gathered photographs to depict aspects of their daily lives. Participatory analysis was conducted and an advocacy event (including photographic exhibits) held. RESULTS:Wellbeing was described as seeing improvements in the patients' function facilitating inclusion in activities of daily living (including income generation) that had not previously been possible due to their illness. Family caregivers, neighbours and community members play a key role as 'courage givers' supported by health workers and religious groups, though discrimination in the form of social exclusion was also reported to be significant with patients expressing that they may be considered 'prematurely dead' in their community. Palliative care improves wellbeing by providing pain and symptom management enabling patients and / or family caregivers to return to household and income generating tasks. Through close interaction with households and ongoing counselling palliative care services assist to reduce fear and discrimination. CONCLUSIONS:To achieve Sustainable Development Goal 3 for patients and families affected by life limiting illnesses in low resource settings, further understanding of the frequency and impact of discrimination is required as well as improved access to palliative care.

Project description:BackgroundRotavirus vaccine effectiveness is reduced among children in low-income countries. Indirect (transmission-mediated) effects of rotavirus vaccine might contribute to the total population effect of vaccination. We aimed to examine risk factors for transmission of rotavirus to household contacts in Blantyre, Malawi, and estimated the effectiveness of rotavirus vaccine in preventing transmission of infection to household contacts.MethodsIn this prospective household cohort study, we recruited children born after Sept 17, 2012, and aged at least 6 weeks (vaccine-eligible children) with acute rotavirus gastroenteritis and their household contacts, in four government health facilities in Blantyre, Malawi. Clinical data, a bulk stool sample, and 1-2 mL of serum were collected from case children at presentation. Clinical data and stool samples were also prospectively collected from household contacts over 14 days from presentation. A single stool sample was collected from control households containing asymptomatic children who were frequency age-matched to case children. Samples were tested for rotavirus using semi-quantitative real-time PCR and for anti-rotavirus IgA using a semi-quantitative sandwich ELISA. Risk factors for household transmission of rotavirus infection and clinical disease, including disease severity and faecal shedding density, were identified using mixed effects logistic regression. Vaccine effectiveness against transmission was estimated as 1 minus the ratio of secondary attack rates in vaccinated and counterfactual unvaccinated populations, using vaccine effectiveness estimates from the associated diarrhoeal surveillance platform to estimate the counterfactual secondary attack rate without vaccination.FindingsBetween Feb 16, 2015, and Nov 11, 2016, we recruited 196 case households (705 members) and 55 control households (153 members). Household secondary attack rate for rotavirus infection was high (434 [65%] of 665 individuals) and secondary attack rate for clinical disease was much lower (37 [5%] of 698). Asymptomatic infection in control households was common (40 [28%] of 144). Increasing disease severity in an index child (as measured by Vesikari score) was associated with increased risk of transmission of infection (odds ratio 1·17 [95% CI 1·06-1·30) and disease (1·28 [1·08-1·52]) to household contacts. Estimated vaccine effectiveness against transmission was 39% (95% CI 16-57).InterpretationRotavirus vaccine has the potential to substantially reduce household rotavirus transmission. This finding should be considered in clinical and health economic assessments of vaccine effectiveness.FundingWellcome Trust, US National Institutes of Health, and US National Institute of Allergy and Infectious Diseases.

Project description:BackgroundDespite advocating for male involvement in antenatal education, there is unmet need for antenatal education information for expectant couples. The objective of this study was to gain a deeper understanding of the education content for couples during antenatal education sessions in Malawi. This is needed for the development of a tailor-made curriculum for couple antenatal education in the country, later to be tested for acceptability, feasibility and effectiveness.MethodsAn exploratory cross sectional descriptive study using a qualitative approach was conducted in semi-urban areas of Blantyre District in Malawi from February to August 2016. We conducted four focus group discussions (FGDs) among men and women independently. We also conducted one focus group discussion with nurses/ midwives, 13 key informant interviews whose participants were drawn from both health-related and non-health related institutions; 10 in-depth interviews with couples and 10 separate in-depth interviews with men who had attended antenatal clinics before with their spouses. All the interviews were audiotaped, transcribed verbatim and translated from Chichewa, the local language, into English. We managed data with NVivo 10.0 and used the thematic content approach as a guide for analysis.ResultsWe identified one overarching theme: couple antenatal education information needs. The theme had three subthemes which were identified based on the three domains of the maternity cycle which are pregnancy, labour and delivery and postpartum period. Preferred topics were; description of pregnancy, care of pregnant women, role of men during perinatal period, family life birth preparedness and complication readiness plan, coitus during pregnancy and after delivery, childbirth and baby care.ConclusionAntenatal education is a potential platform to disseminate information and discuss with male partners the childbearing period and early parenting. Hence, if both men and women were to participate in antenatal education, their information needs should be prioritized. Men and women had similar choices of topics to be taught during couple antenatal education, with some minor variations.Electronic supplementary materialThe online version of this article (10.1186/s12884-018-2137-y) contains supplementary material, which is available to authorized users.

Project description:BackgroundExclusive breastfeeding is an important component of child survival and prevention of mother-to-child transmission of HIV in resource-poor settings like Malawi. In Malawi, children under the age of six months are exclusively breastfed for an average duration of 3.7 months. This falls short of the recommendations by the World Health Organization as well as the Malawi Ministry of Health that mothers exclusively breastfeed for the first six months of the child's life. Understanding factors that influence exclusive breastfeeding duration among HIV-positive mothers is important in promoting exclusive breastfeeding among these mothers. An exploratory study was therefore conducted to determine factors that influence HIV-positive mothers' prenatal intended duration of exclusive breastfeeding and their likelihood to exclusively breastfeed for six months.MethodsThis paper is based on data from a longitudinal, descriptive and correlation study that was conducted at Queen Elizabeth Central Hospital in Blantyre, Malawi between May 12, 2009 and March 22, 2010. Theory of Planned Behavior guided the study. A face-to-face survey was utilized to collect data from a convenience sample of 110 HIV-positive mothers who were at least 36 weeks pregnant at baseline. A modified and pre-tested breastfeeding attrition prediction tool was used to measure exclusive breastfeeding beliefs, intentions and external influences at baseline. Data were analyzed using descriptive and association statistics. Additionally, multiple regressions were run to determine significant predictors of HIV-positive mothers' prenatal intended duration of exclusive breastfeeding and their likelihood to exclusively breastfeed for six months.ResultsResults revealed high exclusive breastfeeding prenatal intentions among HIV-positive mothers. Prenatal intended duration of exclusive breastfeeding was positively associated with normative, control beliefs and negatively associated with positive beliefs, maternal education and disclosure of HIV status.ConclusionsCurrent results suggest that assessment of mothers' level of education and their positive beliefs towards exclusive breastfeeding may help to identify mothers who are at risk of discontinuing exclusive breastfeeding. Interventions to promote exclusive breastfeeding could include provision of appropriate skills, support and information to help HIV-positive mothers gain control over exclusive breastfeeding.

Dataset Information

Study protocol for a single-centre observational study of household wellbeing and poverty status following a diagnosis of advanced cancer in Blantyre, Malawi - 'Safeguarding the Family' study.

Publications

Study protocol for a single-centre observational study of household wellbeing and poverty status following a diagnosis of advanced cancer in Blantyre, Malawi - <i>'Safeguarding the Family'</i> study.

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