Care-seeking during fatal childhood illness in rural South Africa: a qualitative study.
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ABSTRACT: Objectives
This study aimed to better understand reasons why children in South Africa die at home, including caregivers' care-seeking experiences, decision-making, choice of treatment provider and barriers to accessing care during a child's final illness.Design
This qualitative study included semi-structured in-depth interviews and focus group discussions with caregivers of children who died below the age of 5 years. Data were thematically analysed, and key findings compared with the Pathways to Survival Framework-a model frequently used in the study of child mortality. An adapted model was developed.Setting
Two rural health and demographic surveillance system (HDSS) sites in South Africa-the Agincourt HDSS and the Africa Health Research Institute.Participants
Thirty-eight caregivers of deceased children (29 participated in in-depth interviews and 9 were participants in two focus group discussions). Caregivers were purposively sampled to ensure maximum variation across place of death, child age at death, household socioeconomic status, maternal migration status and maternal HIV status.Findings
Although caregivers faced barriers in providing care to children (including insufficient knowledge and poor transport), almost all did seek care from the formal health system. Negative experiences in health facilities did not deter care-seeking, but most respondents still received poor quality care and were not given adequate safety-netting advice. Traditional healers were only consulted as a last resort when other approaches had failed.Conclusion
Barriers to accessing healthcare disrupt the workings of previously accepted care-seeking models. The adapted model presented in this paper more realistically reflects care-seeking experiences and decision-making during severe childhood illness in rural South Africa and helps explain both the persistence of home deaths despite seeking healthcare, and the impact of a child's death on care-seeking in future childhood illness. This model can be used as the basis for developing interventions to reduce under-5 mortality.
SUBMITTER: Price J
PROVIDER: S-EPMC8094335 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:Background:An estimated 1.2 million children under five years of age die each year in India, with pneumonia and diarrhea among the leading causes. Increasing care-seeking is important to reduce mortality and morbidity from these causes. This paper explores the determinants and patterns of care-seeking for childhood illness in rural Pune district, India. Methods:Mothers having at least one child <5 years from the study area of the Vadu Health and Demographic Surveillance System were enrolled in a prospective cohort study. Household sociodemographic information was collected through a baseline questionnaire administered at enrollment. Participants were visited up to six times between July 2015 and February 2016 to collect information on recent childhood acute illness and associated care-seeking behavior. Multivariate logistic regression explored the associations between care-seeking and child, participant, and household characteristics. Results:We enrolled 743 mothers with 1066 eligible children, completing 2585 follow-up interviews (90% completion). Overall acute illness prevalence in children was 26% with care sought from a health facility during 71% of episodes. Multivariable logistic regression showed care-seeking was associated with the number of reported symptoms (Odds ratio (OR)?=?2.4, 95% confidence interval (CI)?=?1.5-3.9) and household insurance coverage (OR?=?2.2, 95% CI?=?1.1-4.3). We observed an interaction between the associations of illness severity and maternal employment on care-seeking. Somewhat-to-very severe illness was associated with increased care-seeking among both employed (OR?=?5.0, 95% CI?=?2.2-11.1) and currently unemployed mothers (OR?=?7.0, 95% CI?=?3.9-12.6). Maternal employment was associated with reduced care-seeking for non-severe illness (OR?=?0.3, 95% CI?=?0.1-0.7), but not associated with care-seeking for somewhat-to-very severe illness. Child sex was not associated with care-seeking. Conclusions:This study demonstrates the importance of illness characteristics in determining facility-based care-seeking while also suggesting that maternal employment resulted in decreased care-seeking among non-severe illness episodes. The nature of the association between maternal employment and care-seeking is unclear and should be explored through additional studies. Similarly, the absence of male bias in care-seeking should be examined to assess for potential bias at other stages in the management of childhood illness.
| S-EPMC7020658 | biostudies-literature
Project description:BackgroundHalf of under-5 deaths in South Africa occur at home, however the reasons remain poorly described and data on the care pathways during fatal childhood illness is limited. This study aimed to better describe care-seeking behavior in fatal childhood illness and to assess barriers to healthcare and modifiable factors that contribute to under-5 deaths in rural South Africa.MethodsWe conducted a social autopsy study on all under-5 deaths in two rural South African health and demographic surveillance system sites. Descriptive analyses based on the Pathways to Survival Framework were used to characterise how caregivers move through the stages of seeking and providing care for children during their final illness and to identify modifiable factors that contributed to death.FindingsOf 53 deaths, 40% occurred outside health facilities. Rates of antenatal and perinatal preventative care-seeking were high: over 70% of mothers had tested for HIV, 93% received professional assistance during delivery and 79% of children were reportedly immunised appropriately for age. Of the 48 deaths tracked through the stages of the Pathways to Survival Framework, 10% died suddenly without any care, 23% received home care of whom 80% had signs of severe or possibly severe illness, and 85% sought or attempted to seek formal care outside the home. Although half of all children left the first facility alive, only 27% were referred for further care.ConclusionsModifiable factors for preventing deaths during a child's final illness occur both inside and outside the home. The most important modifiable factors occurring inside the home relate to caregivers' recognition of illness and appreciation of urgency in response to the severity of the child's symptoms and signs. Outside the home, modifiable factors relate to inadequate referral and follow-up by health professionals. Further research should focus on identifying and overcoming barriers to referral.
| S-EPMC6804973 | biostudies-literature
Project description:BackgroundAccurate data on care-seeking for child illness are needed to improve public health programs and reduce child mortality. The accuracy of maternal report of care-seeking for child illness as collected through household surveys has not been validated.MethodsA 2016 survey compared reported care-seeking against a gold-standard of health care provider documented care-seeking events among a random sample of mothers of children <5 years in Southern Province, Zambia. Enrolled children were assigned cards with unique barcodes. Seventy-five health care providers were given smartphones with a barcode reader and instructed to scan the cards of participating children seeking care at the source, generating an electronic record of the care-seeking event. Additionally, providers gave all caregivers accessing care for a child <5 years provider-specific tokens used to verify the point of care during the household survey. Reported care-seeking events were ascertained in each household using a questionnaire modeled off the Zambia Demographic and Health Survey (DHS) / Multiple Indicator Cluster Survey (MICS). The accuracy of maternal report of care-seeking behavior was estimated by comparing care-seeking events reported by mothers against provider-documented events.ResultsData were collected on 384 children with fever, diarrhea, and/or symptoms of ARI in the preceding 2 weeks. Most children sought care from government facilities or community-based agents (CBAs). We found high sensitivity (Rural: 0.91, 95% confidence interval CI 0.84-0.95; Urban: 0.98, 95% CI 0.92-0.99) and reasonable specificity (Rural: 0.71, 95% CI 0.57-0.82; Urban: 0.76, 95% CI 0.62-0.85) of maternal report of care-seeking for child illness by type of provider. Maternal report of any care-seeking and seeking care from a skilled provider had slightly higher sensitivity and specificity. Seeking care from a traditional practitioner was associated with lower odds of accurately reporting the event, while seeking care from a government provider was associated with greater odds of accurate report. The measure resulted in a slight overestimation of true care-seeking behavior in the study population.ConclusionsMaternal report is a valid measure of care-seeking for child illness in settings with high utilization of public sector providers. The study findings were limited by the low diversity in care-seeking practices for child illness and the exclusion of shops.
| S-EPMC5854307 | biostudies-literature
Project description:BackgroundMortality among children with acute illness in low-income and middle-income settings remains unacceptably high and the importance of post-discharge mortality is increasingly recognised. We aimed to explore the epidemiology of deaths among young children with acute illness across sub-Saharan Africa and south Asia to inform the development of interventions and improved guidelines.MethodsIn this prospective cohort study, we enrolled children aged 2-23 months with acute illness, stratified by nutritional status defined by anthropometry (ie, no wasting, moderate wasting, or severe wasting or kwashiorkor), who were admitted to one of nine hospitals in six countries across sub-Saharan Africa and south Asia between Nov 20, 2016, and Jan 31, 2019. We assisted sites to comply with national guidelines. Co-primary outcomes were mortality within 30 days of hospital admission and post-discharge mortality within 180 days of hospital discharge. A priori exposure domains, including demographic, clinical, and anthropometric characteristics at hospital admission and discharge, as well as child, caregiver, and household-level characteristics, were examined in regression and survival structural equation models.FindingsOf 3101 children (median age 11 months [IQR 7-16]), 1120 (36·1%) had no wasting, 763 (24·6%) had moderate wasting, and 1218 (39·3%) had severe wasting or kwashiorkor. Of 350 (11·3%) deaths overall, 234 (66·9%) occurred within 30 days of hospital admission and 168 (48·0%) within 180 days of hospital discharge. 90 (53·6%) post-discharge deaths occurred at home. The proportion of children who died following discharge was relatively preserved across nutritional strata. Numerically large high-risk and low-risk groups could be disaggregated for early mortality and post-discharge mortality. Structural equation models identified direct pathways to mortality and multiple socioeconomic, clinical, and nutritional domains acting indirectly through anthropometric status.InterpretationAmong diverse sites in Africa and south Asia, almost half of mortality occurs following hospital discharge. Despite being highly predictable, these deaths are not addressed in current guidelines. A fundamental shift to a child-centred, risk-based approach to inpatient and post-discharge management is needed to further reduce childhood mortality, and clinical trials of these approaches with outcomes of mortality, readmission, and cost are warranted.FundingThe Bill & Melinda Gates Foundation.
| S-EPMC9023747 | biostudies-literature
Project description:BackgroundPatient-centered care is pillar 1 of the "End TB" strategy, but little has been documented in the literature about what this means for people living with rifampicin-resistant (RR-TB). Optimizing care for such individuals requires a better understanding of the challenges they face and the support they need.MethodsA qualitative study was done among persons living with RR-TB and members of their support network. A purposive sample was selected from a larger study population and open-ended interviews were conducted using a semi-standard interview guide. Interviews were recorded and transcribed and the content analyzed using an iterative thematic analysis based in grounded theory.Results16 participants were interviewed from three different provinces. Four distinct periods in which support was needed were identified: 1) pre-diagnosis; 2) pre-treatment; 3) treatment; and 4) post-treatment. Challenges common in all four periods included: socioeconomic issues, centralized care, and the need for better counseling at multiple levels.ConclusionsBeyond being a "very humiliating illness", RR-TB robs people of their physical, social, economic, psychological, and emotional well-being far beyond the period when treatment is being administered. Efforts to tackle these issues are as important as new drugs and diagnostics in the fight against TB.
| S-EPMC6969445 | biostudies-literature
Project description:Diarrhea and pneumonia are the leading causes of morbidity and mortality in children under five, and Pakistan is amongst the countries with the highest burden and low rates of related treatment coverage. We conducted a qualitative study as part of the formative phase to inform the design of the Community Mobilization and Community Incentivization (CoMIC) cluster randomized control trial (NCT03594279) in a rural district of Pakistan. We conducted in-dept interviews and focused group discussions with key stakeholders using a semi-structured study guide. Data underwent rigorous thematic analysis and major themes identified included socio-cultural dynamics, community mobilization and incentives, behavioral patterns and care seeking practices for childhood diarrhea and pneumonia, infant and young child feeding practices (IYCF), immunization, water sanitation and hygiene (WASH) and access to healthcare. This study highlights shortcomings in knowledge, health practices and health systems. There was to a certain extent awareness of the importance of hygiene, immunization, nutrition, and care-seeking, but the practices were poor due to various reasons. Poverty and lifestyle were considered prime factors for poor health behaviors, while health system inefficiencies added to these as rural facilities lack equipment and supplies, resources, and funding. The community identified that intensive inclusive community engagement and demand creation strategies tied to conditioned short term tangible incentives could help foster behavior change.
| S-EPMC10187914 | biostudies-literature
Project description:BackgroundPakistan has alarmingly high numbers of maternal mortality along with suboptimal care-seeking behaviour. It is essential to identify the barriers and facilitators that women and families encounter, when deciding to seek maternal care services. This study aimed to understand health-seeking patterns of pregnant women in rural Sindh, Pakistan.MethodsA qualitative study was undertaken in rural Sindh, Pakistan as part of a large multi-country study in 2012. Thirty three focus group discussions and 26 in-depth interviews were conducted with mothers [n = 173], male decision-makers [n = 64], Lady Health Workers [n = 64], Lady Health Supervisors [n = 10], Women Medical Officers [n = 9] and Traditional Birth Attendants [n = 7] in the study communities. A set of a priori themes regarding care-seeking during pregnancy and its complications as well as additional themes as they emerged from the data were used for analysis. Qualitative analysis was done using NVivo version 10.ResultsWomen stated they usually visited health facilities if they experienced pregnancy complications or danger signs, such as heavy bleeding or headache. Findings revealed the importance of husbands and mothers-in-law as decision makers regarding health care utilization. Participants expressed that poor availability of transport, financial constraints and the unavailability of chaperones were important barriers to seeking care. In addition, private facilities were often preferred due to the perceived superior quality of services.ConclusionMaternal care utilization was influenced by social, economic and cultural factors in rural Pakistani communities. The perceived poor quality care at public hospitals was a significant barrier for many women in accessing health services. If maternal lives are to be saved, policy makers need to develop processes to overcome these barriers and ensure easily accessible high-quality care for women in rural communities.Trial registrationNCT01911494.
| S-EPMC4943512 | biostudies-literature
Project description:BackgroundThough non-communicable diseases contribute to an increasing share of the disease burden in South Asia, health systems in most rural communities are ill-equipped to deal with chronic illness. This analysis seeks to describe care-seeking behavior among women of reproductive age who died from fatal non-communicable diseases as recorded in northwest rural Bangladesh between 2001 and 2007.MethodsThis analysis utilized data from a large population-based cohort trial in northwest rural Bangladesh. To conduct verbal autopsies of women who died while under study surveillance, physicians interviewed family members to elicit the biomedical symptoms that the women experienced as well as a narrative of the events leading to deaths. We performed qualitative textual analysis of verbal autopsy narratives for 250 women of reproductive age who died from non-communicable diseases between 2001 and 2007.ResultsThe majority of women (94%) sought at least one provider for their illnesses. Approximately 71% of women first visited non-certified providers such as village doctors and traditional healers, while 23% first sought care from medically certified providers. After the first point of care, women appeared to switch to medically certified practitioners when treatment from non-certified providers failed to resolve their illness.ConclusionsThis study suggests that treatment seeking patterns for non-communicable diseases are affected by many of the sociocultural factors that influence care seeking for pregnancy-related illnesses. Families in northwest rural Bangladesh typically delayed seeking treatment from medically certified providers for NCDs due to the cost of services, distance to facilities, established relationships with non-certified providers, and lack of recognition of the severity of illnesses. Most women did not realize initially that they were suffering from a chronic illness. Since women typically reached medically certified providers in advanced stages of disease, they were usually told that treatment was not possible or were referred to higher-level facilities that they could not afford to visit. Women suffering from non-communicable disease in these rural communities need feasible and practical treatment options. Further research and investment in adequate, appropriate care seeking and referral is needed for women of reproductive age suffering from fatal non-communicable diseases in resource-poor settings.
| S-EPMC3468372 | biostudies-literature
Project description:PurposeThe percentage of people who are diagnosed with epilepsy (diagnostic gap), access, receive and adhere (treatment gap) to anti-seizure medication (ASM) in low- and middle- income countries remains low. We explored the epilepsy care cascade, measured the diagnostic and treatment gaps, and examined socio-demographic factors associated with adherence to ASMs in rural South Africa.MethodsUtilizing a population-based cohort of 311 people with active convulsive epilepsy (ACE) residing in rural northeastern South Africa, a questionnaire was administered to examine associations between demographic and socioeconomic factors and the epilepsy treatment gap. Blood was taken to measure levels of ASMs.ResultsOf the 311 individuals diagnosed, 93 % of individuals reported being previously told they had epilepsy and 94 % reported previously attending a health facility for their epilepsy. ASMs were detected in 138 individuals (76 %) and optimal levels were detected in 67 individuals, resulting in a treatment gap of 63 % (95 % confidence interval [95 %CI]: 56 %-70 %). Self-reported specificity of ASM use was 23 % (95 %CI: 12-39 %) and individuals ≥18 years were significantly more likely to report taking ASM than children and were significantly (p = 0.011) more likely to be adherent.ConclusionMost people with epilepsy in rural South Africa had been previously diagnosed with epilepsy and had accessed care for epilepsy, yet the level of ASM adherence remained low, significantly lower amongst children. Understanding ways of improving knowledge of and adherence to ASM in rural South Africa is necessary, especially amongst children. The epilepsy care cascade can be useful in identifying gaps in care and targeting interventions to reduce these gaps.
| S-EPMC7443697 | biostudies-literature
Project description:BackgroundPneumonia, diarrhoea, and malaria are among the leading causes of death in children. These deaths are largely preventable if appropriate care is sought early. This review aimed to determine the percentage of caregivers in low- and middle-income countries (LMICs) with a child less than 5 years who were able to recognise illness in their child and subsequently sought care from different types of healthcare providers.Methods and findingsWe conducted a systematic literature review of studies that reported recognition of, and/or care seeking for episodes of diarrhoea, pneumonia or malaria in LMICs. The review is registered with PROSPERO (registration number: CRD42011001654). Ninety-one studies met the inclusion criteria. Eighteen studies reported data on caregiver recognition of disease and seventy-seven studies on care seeking. The median sensitivity of recognition of diarrhoea, malaria and pneumonia was low (36.0%, 37.4%, and 45.8%, respectively). A median of 73.0% of caregivers sought care outside the home. Care seeking from community health workers (median: 5.4% for diarrhoea, 4.2% for pneumonia, and 1.3% for malaria) and the use of oral rehydration therapy (median: 34%) was low.ConclusionsGiven the importance of this topic to child survival programmes there are few published studies. Recognition of diarrhoea, malaria and pneumonia by caregivers is generally poor and represents a key factor to address in attempts to improve health care utilisation. In addition, considering that oral rehydration therapy has been widely recommended for over forty years, its use remains disappointingly low. Similarly, the reported levels of care seeking from community health workers in the included studies are low even though global action plans to address these illnesses promote community case management. Giving greater priority to research on care seeking could provide crucial evidence to inform child mortality programmes.
| S-EPMC3981715 | biostudies-literature