Correction: Caring for children with neurodevelopmental disability: Experiences from caretakers and health workers in rural eastern Uganda.
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ABSTRACT:
SUBMITTER: PLOS ONE Staff
PROVIDER: S-EPMC7891703 | biostudies-literature | 2021
REPOSITORIES: biostudies-literature
Publications
Correction: Caring for children with neurodevelopmental disability: Experiences from caretakers and health workers in rural eastern Uganda.
PloS one 20210218 2
[This corrects the article DOI: 10.1371/journal.pone.0236488.]. ...[more]
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Project description:BackgroundLong term outcomes of children with neurodevelopmental disability are influenced by the condition itself, available health services and caretakers' coping ability to nurture the children which may be related to their beliefs and experiences. Most children with neurodevelopmental disabilities live in resource constrained settings. To inform design of contextually appropriate interventions, this study explored health workers' and caretakers' experiences in caring for infants with neurodevelopmental disability in rural eastern Uganda.MethodsA qualitative case study was carried out in December 2017 and involved in-depth interviews with 14 caretakers of infants with severe neurodevelopmental disability, and five health workers in Iganga/Mayuge Demographic Surveillance Site in eastern Uganda. The interviews with caretakers were conducted in Lusoga, the local language, and in English for the health workers, using a pre-determined open-ended interview guide. Data were analyzed using latent content analysis.ResultsCaretakers described the experience of caring for children with neurodevelopmental disability as impoverishing and 'imprisoning' due to high care costs, inability to return to income generating activities and nursing challenges. The latter resulted from failure in body control and several aspects of nutrition and maintaining vital functions, coupled with limited support from the community and the health system. Many caretakers expressed beliefs in supernatural causes of neurodevelopmental disability though they reported about complications during and shortly after the birth of the affected child. Care-seeking was often challenging and impeded by costs and the feeling of lack of improvement. The health care system was also found to be incapable of adequately addressing the needs of such children due to lack of commodities, and human resource limitations.ConclusionThe caretakers expressed a feeling of emotional stress due to being left alone with a high nursing burden. Improvement in the health services including a holistic approach to care, improved community awareness and parental support could contribute to nursing of children with NDD.
| S-EPMC7384645 | biostudies-literature
Project description:Each year, nearly 30 million children globally are at risk of developmental difficulties and disability as a result of newborn health conditions, with the majority living in resource-constrained countries. This study estimates the annual cost to families related to caring for a young child with developmental disability in Uganda. Nested within a feasibility trial of early care and support for young children with developmental disabilities, this sub-study estimated the cost of illness, the cost of paternal abandonment of the caregiver and the affordability of care by household. Seventy-three caregivers took part in this sub-study. The average annual cost of illness to families was USD 949. The main cost drivers were the cost of seeking care and income lost due to loss of employment. Households caring for a child with a disability spent more than the national average household expenditure, and the annual cost of illness for all households was more than 100% of the national GDP per capita. In addition, 84% of caregivers faced economic consequences and resorted to wealth-reducing coping strategies. Families caring for a child with severe impairment incurred USD 358 more on average than those with mild or moderate impairment. Paternal abandonment was common (31%) with affected mothers losing an average of USD 430 in financial support. Caring for a young child with developmental disability was unaffordable to all the study households. Programmes of early care and support have the potential to reduce these financial impacts. National efforts to curb this catastrophic health expenditure are necessary.
| S-EPMC10115281 | biostudies-literature
Project description:Improvements in community health workers' (CHWs) knowledge and practices in low-income countries increasingly involve mobile phones and videos. However, little data exists on CHWs' and mothers' experiences of using such phones and videos. In this study, educational videos on nutrition, health and hygiene were downloaded onto mobile phones, which were given to 12 CHWs in rural Uganda. In 2018, these CHWs used the videos for a period of 3 months to support their work during their visits with families. We subsequently conducted individual interviews with eight CHWs and held four focus group discussions with 16 mothers. From the inductively analysed data, we identified four key themes: impact, competence, meaningfulness and choice, which are also dimensions of the Intrinsic Task Motivation Model. The model describes the motivation of workers and has previously been used in connection with CHWs. In our study, CHWs and mothers considered that the videos had more strongly impacted their learning than traditional teaching methods, and they felt the videos improved the child feeding and caring competence of both CHWs and mothers. Furthermore, the CHWs found that the videos enhanced the meaningfulness of their work, as they felt more greatly appreciated and necessary. In addition, they experienced more freedom of choice in their ability to influence their working routines. This study shows that educational videos are well received among CHWs and mothers. Educational videos are a promising method to maintain and improve the motivation of voluntary CHWs and influence correct child feeding and hygiene practices in Uganda.
| S-EPMC8932732 | biostudies-literature
Project description:BackgroundCancer morbidity and mortality is rising in sub-Saharan Africa. Given this rise, family caregivers play an integral role in provision of quality cancer care services. This study explored the family caregivers (FCGs)/relatives' experiences of caring for patients with advanced cancer (stage 3 or stage 4) in Uganda.MethodsThis was a descriptive qualitative study exploring the lived experiences of FCGs of patients with advanced cancer attending care at the Uganda cancer institute. We purposively recruited twelve FCGs and conducted face-to-face in-depth interviews using an interviewer-guided semi-structured questionnaire. Data were analyzed by thematic analysis.ResultsThe age range of participants was 19 to 49 years. Most participants were children of the patients (n = 7), had attained tertiary education (n = 7), and had taken care of their loved ones for at least one year (n = 10). Six themes emerged from data analysis; (i) caring roles, (ii) caring burdens, (iii) role conflict, (iv) health system tensions, (v) support and motivation, (vi) caring benefits, lessons and recommendations.ConclusionStudy findings highlight the fundamental role of FCGs in the care of their loved ones, and illuminate the neglected physical, psychological and social challenges of family caregivers amidst health system tensions and conflicting roles. The needs of family caregivers should be embedded within cancer care, prevention and control programs particularly in low resource settings.
| S-EPMC10599584 | biostudies-literature
Project description:BackgroundApproximately 1.3 billion people worldwide face barriers in accessing inclusive healthcare due to disabilities, leading to worse health outcomes, particularly in low and middle-income countries (LMIC). However, there is a lack of training of healthcare workers about disability, both globally and in Uganda.ObjectivesTo use mixed research methods to develop a comprehensive training program with standardisedelements for healthcare workers in Uganda, focusing on improving their knowledge, attitudes, and skills inproviding care for people with disabilities.MethodsThe Medical Research Council (MRC) approach was employed to guide the development of the training intervention. We conducted an umbrella review to gather relevant literature on disability training for healthcare workers. Interviews were conducted with international experts to gain insights and perspectives on the topic. Additionally, interviews were undertaken with people with disabilities and healthcare workers in Uganda to understand their experiences and needs. A participatory workshop was organised involving key stakeholders, to collaboratively design the training material based on the findings from these data sources.ResultsEight review articles examined training programs for healthcare workers on disability. Training settings ranged from specialised clinical settings to non-clinical settings, and the duration and evaluation methods of the training varied widely. Lectures and didactic methods were commonly used, often combined with other approaches such as case studies and simulations. The impact of the training was assessed through healthcare worker reports on attitudes, knowledge, and self-efficacy. Interviews emphasised the importance of involving people with disabilities in the training and improving communication and understanding between healthcare providers and people with disabilities. Five themes for a training on disability for healthcare workers were generated through the workshop, including responsibilities and rights, communication, informed consent, accommodation, and referral and connection, which were used to guide the development of the curriculum, training materials and training approach.ConclusionThis study presents a novel approach to develop a training program that aims to enhance healthcare services for people with disabilities in Uganda. The findings offer practical insights for the development of similar programs in LMICs. The effectiveness of the training program will be evaluated through a pilot test, and policy support is crucial for its successful implementation at scale.
| S-EPMC10988913 | biostudies-literature
Project description:BACKGROUND: Curative interventions delivered by community health workers (CHWs) were introduced to increase access to health services for children less than five years and have previously targeted single illnesses. However, CHWs in the integrated community case management of childhood illnesses strategy adopted in Uganda in 2010 will manage multiple illnesses. There is little documentation about the performance of CHWs in the management of multiple illnesses. This study compared the performance of CHWs managing malaria and pneumonia with performance of CHWs managing malaria alone in eastern Uganda and the factors influencing performance. METHODS: A mixed methods study was conducted among 125 CHWs providing either dual malaria and pneumonia management or malaria management alone for children aged four to 59 months. Performance was assessed using knowledge tests, case scenarios of sick children, review of CHWs' registers, and observation of CHWs in the dual management arm assessing respiratory symptoms. Four focus group discussions with CHWs were also conducted. RESULTS: CHWs in the dual- and single-illness management arms had similar performance with respect to: overall knowledge of malaria (dual 72%, single 70%); eliciting malaria signs and symptoms (50% in both groups); prescribing anti-malarials based on case scenarios (82% dual, 80% single); and correct prescription of anti-malarials from record reviews (dual 99%, single 100%). In the dual-illness arm, scores for malaria and pneumonia differed on overall knowledge (72% vs 40%, p < 0.001); and correct doses of medicines from records (100% vs 96%, p < 0.001). According to records, 82% of the children with fast breathing had received an antibiotic. From observations 49% of CHWs counted respiratory rates within five breaths of the physician (gold standard) and 75% correctly classified the children. The factors perceived to influence CHWs' performance were: community support and confidence, continued training, availability of drugs and other necessary supplies, and cooperation from formal health workers. CONCLUSION: CHWs providing dual-illness management handled malaria cases as well as CHWs providing single-illness management, and also performed reasonably well in the management of pneumonia. With appropriate training that emphasizes pneumonia assessment, adequate supervision, and provision of drugs and necessary supplies, CHWs can provide integrated treatment for malaria and pneumonia.
| S-EPMC3480882 | biostudies-other
Project description:AimWe assessed the burden and experiences of caregivers looking after stroke patients in Kampala, Uganda.DesignWe conducted a qualitative cross-sectional study between May 2018-July 2018 among primary caregivers of stroke patients.MethodsThe primary caregiver was defined as the person spending most of the time providing daily care for the stroke patient for at least four months. Purposive sampling was used to consecutively recruit the primary caregivers. In-depth interviews were conducted, and audiotape recorded, and observations were also made. Data were managed using NVIVO 12.0 following thematic approach.ResultsTwenty-five caregivers were included in the analysis with a mean age of 39.3, SD 10.7. Four themes were identified from the qualitative analysis on caregivers' experiences of looking after stroke patients: taking on new responsibilities, factors that protected caregivers from breaking down, limited resources and experiences with patient outcomes. Our findings highlight the need for interventions to support stroke patients and their caregivers.
| S-EPMC6805272 | biostudies-literature
Project description:[This corrects the article DOI: 10.1371/journal.pone.0240694.].
| S-EPMC7785225 | biostudies-literature
Project description:BackgroundThe rising incidence of Alzheimer's disease among older-age adults worldwide has been accompanied by an increase in caregiving burden. Limited work has examined the lived experiences of both formal and informal caregivers of people living with dementia in low-income countries.MethodsWe conducted one-on-one, in-depth qualitative interviews with a purposive sample of 10 informal caregivers and 5 formal caregivers of people living with dementia in Mbarara, Uganda. They were interviewed about their experiences caring for people with dementia until thematic saturation was reached. All interviews were audio recorded, transcribed into English, and thematically analysed.ResultsTwo primary themes emerged from the data: patient factors influencing caregiving burden (problematic behaviours, such as wandering and aggression) and patient physical health and cognitive deterioration (namely, loss of memory and incontinence). Psychosocial and economic aspects of caregiving burden included financial costs, family conflicts, anxiety, stigma, and substance misuse.ConclusionsBoth formal and informal caregivers of people living with dementia experience physical, financial, and psychological stressors. Interventions aimed at reducing these stressors would benefit caregivers as well as improve quality of care for people living with dementia.
| S-EPMC7544160 | biostudies-literature
Project description:ImportanceEstimating the true burden of SARS-CoV-2 infection has been difficult in sub-Saharan Africa owing to asymptomatic infections and inadequate testing capacity. Antibody responses from serologic surveys can provide an estimate of SARS-CoV-2 exposure at the population level.ObjectiveTo estimate SARS-CoV-2 seroprevalence, attack rates, and reinfection in eastern Uganda using serologic surveillance from 2020 to early 2022.Design, setting, and participantsThis cohort study was conducted in the Tororo and Busia districts of eastern Uganda. Plasma samples from participants in the Program for Resistance, Immunology, Surveillance, and Modeling of Malaria in Uganda Border Cohort were obtained at 4 sampling intervals: October to November 2020, March to April 2021, August to September 2021, and February to March 2022. Each participant contributed up to 4 time points for SARS-CoV-2 serology, with almost half of all participants contributing at all 4 time points, and almost 90% contributing at 3 or 4 time points. Information on SARS-CoV-2 vaccination status was collected from participants, with the earliest reported vaccinations in the cohort occurring in May 2021.Main outcomes and measuresThe main outcomes of this study were antibody responses to the SARS-CoV-2 spike protein as measured with a bead-based serologic assay. Individual-level outcomes were aggregated to population-level SARS-CoV-2 seroprevalence, attack rates, and boosting rates. Estimates were weighted by the local age distribution according to census data.ResultsA total of 1483 samples from 441 participants living in 76 households were tested. Of the 441 participants, 245 (55.6%) were female, and their mean (SD) age was 16.04 (16.04) years. By the end of the Delta wave and before widespread vaccination, adjusted SARS-CoV-2 seroprevalence was 67.7% (95% credible interval [CrI], 62.5%-72.6%) in the study population. During the subsequent Omicron wave, 84.8% (95% CrI, 67.9%-93.7%) of unvaccinated, previously seronegative individuals were infected for the first time, and 50.8% (95% CrI, 40.6%-59.7%) of unvaccinated, already seropositive individuals were likely reinfected, leading to an overall seropositivity of 96.0% (95% CrI, 93.4%-97.9%) in this population. These results suggest a lower probability of reinfection in individuals with higher preexisting antibody levels. There was evidence of household clustering of SARS-CoV-2 seroconversion. No significant associations were found between SARS-CoV-2 seroconversion and gender, household size, or recent Plasmodium falciparum malaria exposure.Conclusions and relevanceIn this cohort study in a rural population in eastern Uganda, there was evidence of very high SARS-CoV-2 infection rates throughout the pandemic inconsistent with national level case data and high reinfection rates during the Omicron wave.
| S-EPMC9932849 | biostudies-literature