Browsing by Author "Nakigudde, Janet"
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Item Adaptation of the multidimensional scale of perceived social support in a Ugandan setting(African health sciences, 2009) Nakigudde, Janet; Musisi, Seggane; Ehnvall, Anna; Airaksinen, Eija; Agren, HansThe Multidimensional Scale of Perceived Social Support (MSPSS) was developed in the USA. The adequacy of its use in Uganda to guarantee its reliability and validity has not been ascertained. Aim: Thus the aim of the present study was to adapt the MSPSS scale by testing the validity and reliability of the scale in a Ugandan setting. Methods: A cross-sectional design was employed and 240 respondents were consecutively recruited from postnatal clinics in Mulago hospital. Analysis of reliability and validity of the adapted MSPSS was done. Cronbach alpha and principal component analyses were respectively generated. Results: Three subscales of the MSPSS that had been identified in other populations were evident in the Ugandan population. Using the Cronbach’s alpha, the MSPSS demonstrated good internal consistency at .83. A dendrogram indicated that all sub items of the MSPSS were inter-linked. Exploratory Factor analysis derived three components. Principal Component analysis using rotated varimax generated high loadings on all subscales. Conclusion: The adapted MSPSS can reliably be used in Uganda.Item The Africa Ethics Working Group (AEWG): a model of collaboration for psychiatric genomic research in Africa(Wellcome Open Research, 2021) Kamuya, Dorcas; Bitta, Mary A.; Addissie, Adamu; Naanyu, Violet; Palk, Andrea; Mwaka, Erisa; Kamaara, Eunice; Tadele, Getnet; Teka Wolde, Telahun; Nakigudde, Janet; Manku, Kiran; Musesengwa, Rosemary; Singh, IlinaThe Africa Ethics Working Group (AEWG) is a South-South-North collaboration of bioethics and mental health researchers from sub- Saharan Africa, working to tackle emerging ethical challenges in global mental health research. Initially formed to provide ethical guidance for a neuro-psychiatric genomics research project, AEWG has evolved to address cross cutting ethical issues in mental health research aimed at addressing equity in North-South collaborations. Global South refers to economically developing countries (sub- Saharan Africa in this context) and Global North to economically developed countries (primarily Europe, UK and North America). In this letter we discuss lessons that as a group we have learnt over the last three years; lessons that similar collaborations could draw on. With increasing expertise from Global South as an outcome of several capacity strengthening initiatives, it is expected that the nature of scientific collaborations will shift to a truly equitable partnership. The AEWG provides a model to rethink contributions that each partner could make in these collaborations.Item A comparison of the behavioral and emotional disorders of primary school-going orphans and non-orphans in Uganda(African health sciences, 2007) Musisi, Seggane; Kinyanda, Eugene; Nakasujja, Noeline; Nakigudde, JanetThis study investigated the emotional and behavioral problems of orphans in Rakai District, Uganda, and to suggest interventions. Studies, elsewhere, have shown orphans to have high levels of psychological problems. However, in Uganda such studies are limited and no specific interventions have been suggested. Methods: The study employed a cross-sectional unmatched case control design to compare emotional and behavioral problems of 210 randomly selected primary school-going orphans and 210 non-orphans using quantitative and qualitative methods employing standardized questionnaires, Focus Group discussions and selected Key Informant interviews. All children were administered Rutter’s Children’s Teacher Administered Behavior Questionnaire to measure psychological distress and a modified version of Cooper’s Self-Report Measure for Social Adjustment. Standardized psychiatric assessments were done on children scoring > 9 on the Rutter’s Scale, using the WHO-ICD-10 diagnostic checklists. Results: Both orphans and non-orphans had high levels of psychological distress as measured using Rutter’s questionnaire but with no significant statistical difference between the two groups (Rutter score > 9; 45.1% & 36.5% respectively; p= 0.10) and no major psychiatric disorders such as psychotic, major affective or organic mental syndromes. Psychological distress was associated with poor academic performance (p=0.00) in both groups. More orphans, than non-orphans had more common emotional and behavioral problems e.g. more orphans reported finding “life unfair and difficult” (p=0.03); 8.3% orphans compared to 5.1 % of the non-orphans reported having had past suicidal wishes (p=0.30) and more reported past “forced sex / abuse” (p=0.05). Lastly, the orphans’ social functioning in the family rated significantly worse compared to the non-orphans (p= 0.05). Qualitatively, orphans, compared to nonorphans were described as “ needy, sensitive, isolative with low confidence and self-esteem and who often lacked love, protection, identity, security, play, food and shelter.” Most lived in big poor families with few resources, faced stigma and were frequently relocated. Community resources were inadequate. Conclusion: In conclusion, more orphans compared to non-orphans exhibited common emotional and behavioral problems but no major psychiatric disorders. Orphans were more likely to be emotionally needy, insecure, poor, exploited, abused, or neglected. Most lived in poverty with elderly widowed female caretakers. They showed high resilience in coping. To comprehensively address these problems, we recommend setting up a National Policy and Support Services for Orphans and Other Vulnerable Children and their families, a National Child Protection Agency for all Children, Child Guidance Counselors in those schools with many orphans and lastly social skills training for all children.Item Consent for mobile phone surveys of non-communicable disease risk factors in low-resource settings: an exploratory qualitative study in Uganda(Mhealth, 2019) Mwaka, Erisa; Nakigudde, Janet; Ali, Joseph; Ochieng, Joseph; Hallez, Kristina; Tweheyo, Raymond; Labrique, Alain; Gibson, Dustin G.; Rutebemberwa, Elizeus; Pariyo, GeorgeLack of data for timely decision-making around the prevention and control of noncommunicable diseases (NCDs) presents special challenges for policy makers, especially in resource-limited settings. New data collection methods, including pre-recorded Interactive Voice Response (IVR) phone surveys, are being developed to support rapid compilation of population-level disease risk factor information in such settings. We aimed to identify information that could be used to optimize consent approaches for future mobile phone surveys (MPS) employed in Uganda and, possibly, similar contexts. Methods: We conducted an in-depth qualitative study with key stakeholders in Uganda about consent approaches, and potential challenges, for pre-recorded IVR NCD risk factor surveys. Semi-structured interviews were conducted with 14 key informants. A contextualized thematic approach was used to interpret the results supported by representative quotes. Results: Several potential challenges in designing consent approaches for MPS were identified, including low literacy and the lack of appropriate ways of assessing comprehension and documenting consent. Communication with potential respondents prior to the MPS and providing options for callbacks were suggested as possible strategies for improving comprehension within the consent process. “Opt-in” forms of authorization were preferred over “opt-out”. There was particular concern about data security and confidentiality and how matters relating to this would be communicated to MPS respondents. Conclusions: These local insights provide important information to support optimization of consent for MPS, whose use is increasing globally to advance public health surveillance and research in constructive waysItem Experiences and practices of key research team members in obtaining informed consent for pharmacogenetic research among people living with HIV: a qualitative study(Research Ethics, 2022) Ochieng, Joseph; Kaawa-Mafigiri, David; Munabi, Ian; Nakigudde, Janet; Nabukenya, Sylvia; Nakwagala, Frederick N.; Barugahare, John; Kwagala, Betty; Ibingira, Charles; Twimwijukye, Adelline; Sewankambo, Nelson; Mwaka Sabakaki, ErisaThis study aimed to explore experiences and practices of key research team members in obtaining informed consent for pharmacogenetics research and to identify the approaches used for enhancing understanding during the consenting process. Data collection involved 15 qualitative, in-depth interviews with key researchers who were involved in obtaining informed consent from HIV infected individuals in Uganda for participation in pharmacogenetic clinical trials. The study explored two prominent themes: approaches used to convey information and enhance research participants’ understanding and challenges faced during the consenting process. Several barriers and facilitators for obtaining consent were identified. Innovative and potentially effective consenting strategies were identified in this study that should be studied and independently verified.Item An exploration of caregiver burden for children with nodding syndrome (lucluc) in Northern Uganda(BMC psychiatry, 2016) Nakigudde, Janet; Mutamba, Byamah Brian; Bazeyo, William; Musisi, Seggane; Okello, JamesCaregivers of patients with chronic illnesses are often uncompensated for work that is physically demanding, time consuming and emotionally and economically draining. This is particularly true for caregivers of children with nodding syndrome, an emergent neurological disorder of unknown etiology in resource poor settings in Africa. We aimed to explore perceptions of caregivers regarding challenges that a typical caregiver faces when caring for a child with nodding syndrome. Methods: We used a qualitative exploratory study design with focus group discussions and in-depth interviews to collect data. We analyzed data using the qualitative analysis software package of NVivo and thematic query building. Results: Emergent themes centered on burden of care with emotional agony as the most prominent. Subthemes reflecting the burden of care giving included child and caregiver safety concerns, burnout, social isolation and rejection, and homicidal ideation. Caregivers also complained of physical and financial constraints associated with the care of children with nodding syndrome. Conclusions: The findings point to a high burden of care for caregivers of children with nodding syndrome and suggests the need to incorporate community-based psychosocial and mental health care services for the caregivers of affected children into the national health system response.Item An exploratory study on the feasibility and appropriateness of family psychoeducation for postpartum women with psychosis in Uganda(BMC Psychiatry, 2013) Nakigudde, Janet; Ehnvall, Anna; Mirembe, Florence; Musisi, Seggane; Airaksinen, EijaWe explored how family psychoeducation could be made culturally sensitive for postpartum mothers with psychotic illness in a Ugandan setting. Methods: A qualitative multi-method approach using an already existing family psychoeducation Tool Kit was adapted to incorporate lay perceptions related to psychotic illness in the postpartum period in this Ugandan setting. The participants consisted of postpartum women with psychotic illness, caregivers/family members, psychiatric nurses and psychologists. A modified version of a family psychoeducation programme for postpartum women with psychosis was formulated and pilot-tested. Results: Modifications in the standard family psychoeducation programme were both in the process and content of family psychoeducation. Under process, effective communication, cultural background, appropriate dress, involving only one family member, low literacy, and flexibility in timekeeping were raised. The theme of content yielded the incorporation of lay perceptions of mental illness, family planning, income generating, and an emphasis of premorbid and morbid personalities of the patients. Conclusion: The basic principles and assumptions underlying psychoeducation remained the same. Changes made in the process and content of family psychoeducation reflected the social, cultural and gender reality of the population.Item "I decided in my heart I have to complete the sessions": A qualitative study on the acceptability of an evidence-based HIV risk reduction intervention among women engaged in sex work in Uganda(Public Library of Science, 2023-01) Sensoy Bahar, Ozge; Nabunya, Proscovia; Nabayinda, Josephine; Witte, Susan; Kiyingi, Joshua; Nsubuga, Edward; Schriger, Simone; Nattabi, Jennifer; Mayo-Wilson, Larissa Jennings; Nakigudde, Janet; Tozan, Yesim; Ssewamala, Fred MAbstract Background The HIV burden remains a critical public health concern and women engaged in sex work [WESW] are at significantly higher risk compared to the general adult population. Similar to other sub-Saharan African countries, Uganda reports high rates of HIV prevalence among WESW. Yet, they have not been targeted by theory-informed HIV prevention intervention approaches. Methods We conducted semi-structured in-depth interviews with 20 WESW upon intervention completion to explore their experiences with an evidence-based HIV risk reduction intervention that was implemented as part of a combination intervention tested in a clinical trial in Uganda (2018–2023. Specifically, we explored their initial motivations and concerns for participating in the intervention, barriers and facilitators to attendance, and their feedback on specific intervention characteristics. Results The main expectations revolved around access to health-related information, including information on STIs, HIV, and PrEP as well as on how one can protect themselves while engaging in sex work. Initial concerns were around potential breach of confidentiality and fear of arrest. The main facilitators for session attendance were the motivation to learn health-related information, the attitude of facilitators, and the incentives received for participation, whereas main challenges were related to family commitments and work schedules. WESW appreciated the group format of the intervention and found the location and times of the intervention delivery acceptable. Discussion and conclusions Overall, our findings suggest that the HIV risk reduction intervention was appropriate and acceptable to WESW. Yet, WESW experience unique concerns and barriers that need to be accounted for when designing interventions targeting this population, especially in resource-limited settings where sex work is illegal and highly stigmatized. Clinical trial registration NCT03583541.Item Implementing an early childhood school-based mental health promotion intervention in low-resource Ugandan schools: study protocol for a cluster randomized controlled trial(Trials, 2014) Huang, Keng-Yen; Nakigudde, Janet; Calzada, Esther; Boivin, Michael J.; Ogedegbe, Gbenga; Brotman, Laurie MillerChildren in Sub-Saharan Africa (SSA) are burdened by significant unmet mental health needs, but this region has limited access to mental health workers and resources to address these needs. Despite the successes of numerous school-based interventions for promoting child mental health, most evidence-based interventions are not available in SSA. This study will investigate the transportability of an evidence-based program from a developed country (United States) to a SSA country (Uganda). The approach includes task-shifting to early childhood teachers and consists of professional development (five days) to introduce strategies for effective behavior management and positive teacher-student interactions, and group-based consultation (14 sessions) to support adoption of effective practices and tailoring to meet the needs of individual students. Methods/Design: The design of this study is guided by two implementation frameworks, the Consolidated Framework for Implementation Research and the Teacher Training Implementation Model, that consider multidimensional aspects of intervention fidelity and contextual predictors that may influence implementation and teacher outcomes. Using a cluster randomized design, 10 schools in Uganda will be randomized to either the intervention group (five schools) or the waitlist control group (five schools). A total of 80 to 100 early childhood teachers will be enrolled in the study. Teacher utilization of evidence-based strategies and practices will be assessed at baseline, immediate post-intervention (six months after baseline), and at seven months post-intervention (during a new academic year). Fidelity measures will be assessed throughout the program implementation period (during professional development and consultation sessions). Individual teacher and contextual factors will be assessed at baseline. Data will be collected from multiple sources. Linear mixed-effect modeling, adjusting for school nesting, will be applied to address study questions. Discussion: The study will produce important information regarding the value of an evidence-based early intervention, and a theory-guided implementation process and tools designed for use in implementing early childhood evidence-based programs in SSA countries or resource-constrained community settings.Item Maternal depression treatment in HIV (M-DEPTH) Study protocol for a cluster randomized controlled trial(Medicine, 2019) Wagner, Glenn J.; McBain, Ryan K.; Akena, Dickens; Ngo, Victoria; Nakigudde, Janet; Nakku, Juliet; Chemusto, Harriet; Beyeza-Kashesya, Jolly; Gwokyalya, Violet; Faherty, Laura J.; Kyohangirwe, Leticia; Kisaakye Nabitaka, Linda; Lukwata, Hafsa; Linnemayr, Sebastian; Ghosh-Dastidar, Bonnie; Businge, Juliet; Mukasa, Barbara; Wanyenze, Rhoda K.Over one-third of human immunodeficiency virus (HIV)-infected pregnant women are clinically depressed, increasing the risk of mother-to-child transmission (MTCT) of HIV, as well as negative birth and child development outcomes. This study will evaluate the efficacy and cost-effectiveness of an evidence-based stepped care treatment model for perinatal depression (maternal depression treatment in HIV [M-DEPTH]) to improve adherence to prevention of MTCT care among HIV+ women in Uganda. Methods: Eight antenatal care (ANC) clinics in Uganda will be randomized to implement either M-DEPTH (n=4) or usual care (n=4) for perinatal depression among 400 pregnant women (n=50 per clinic) between June 2019 and August 2022. At each site, women who screen positive for potential depression will be enrolled and followed for 18 months post-delivery, assessed in 6-month intervals: baseline, within 1 month of child delivery or pregnancy termination, and months 6, 12, and 18 following delivery. Primary outcomes include adherence to the prevention of mother-to-child transmission (PMTCT) care continuum—including maternal antiretroviral therapy and infant antiretrovial prophylaxis, and maternal virologic suppression; while secondary outcomes will include infant HIV status, post-natal maternal and child health outcomes, and depression treatment uptake and response. Repeated-measures multivariable regression analyses will be conducted to compare outcomes between M-DEPTH and usual care, using 2-tailed tests and an alpha cut-off of P <.05. Using a micro-costing approach, the research team will relate costs to outcomes, examining the incremental cost-effectiveness ration (ICER) of M-DEPTH relative to care as usual. Discussion: This cluster randomized controlled trial will be one of the first to compare the effects of an evidence-based depression care model versus usual care on adherence to each step of the PMTCT care continuum. If determined to be efficacious and costeffective, this study will provide a model for integrating depression care into ANC clinics and promoting adherence to PMTCT.Item Parental Depression and Associations with Parenting and Children’s Physical and Mental Health in a Sub-Saharan African Setting(Child Psychiatry & Human Development, 2017) Huang, Keng-Yen; Abura, Gloria; Theise, Rachelle; Nakigudde, JanetDepression is one of the most prevalent mental health challenges in low- and middle-income countries. However, the mechanisms of parental depression on children’s development are understudied in these countries. This study examined the prevalence of parental depression, contextual predictors of parental depression, and the associations between parental depression, parenting and children’s development in one of the Sub-Saharan African countries-Uganda. Three hundred and three Ugandan parents of young children were recruited and interviewed. Results indicated that about 28 % of parents were depressed. Contextual factors such as low educational attainment, food insecurity, low social support, and high number of children were associated with parental depression. Structural equation modeling also indicated that Ugandan parents’ depression was associated with less optimal parenting, and higher problem behavior, lower social competence, and poorer physical health and school functioning in children. Results provide several cross cultural consistency evidence in associations among parental depression, parenting, and child development.Item Prevalence, types, distribution and associations of psychosocial problems among university students in Uganda(International Journal of Research Studies in Psychology, 2014) Nsereko, Norman David; Musisi, Seggane; Nakigudde, Janet; Holtzman, StevenThe prevalence of psychosocial problems and their associations among University students in Uganda has received very little research attention. Yet, this information is important to provide data to assist in mental health policy formulation for counseling intervention among the vulnerable university students populations in Uganda. The study objective was to investigate the prevalence, types, distribution and associations of psychosocial problems among university students in Uganda. It was part of a larger PhD study that validated an instrument for assessing university students’ psychosocial problems in Uganda. This study employed a descriptive cross sectional survey technique. Five universities participated in a survey conducted during the 2012/13 academic year. Out of 1101 approached students, 976 (88.6%) completed the survey which included a socio-demographic questionnaire, study program characteristics, medical health questionnaire and the University Students Evaluation of Psychosocial Problems (USEPP) instrument which was used to evaluate the psychosocial problems. The prevalence, types and distribution of psychosocial problems among the students was established using descriptive statistics and regression analysis established the relationship between psychosocial problems and the correlates of interest. The estimated prevalence of psychosocial problems among the university students was 36.5%. Students living in off- campus hostels, having chronic medical conditions, and those with a previous history of mental health problems and who perceived their health as poor/fair were at a higher risk of psychosocial problems. These findings highlight to the need to initiate policies to address the students’ psychosocial problems.Item Psychosocial problems and development of psychopathology among Ugandan university students(International Journal of Research Studies in Psychology, 2014) Nsereko, Norman David; Musisi, Seggane; Nakigudde, Janet; Ssekiwu, DenisThe impact of psychosocial problems on the development of psychopathology (depression/anxiety) among university students is an area that greatly remains unexplored leading to insufficient assessment of the mental health status of the students. Consequently, students’ psychosocial problems and psychopathology if left untreated and unchecked, they may severely interfere in their everyday functioning and manifest compromised social cohesion, mental health and wellbeing, with the increased likelihood of future instability and conflict. The aim of the study was to address a broader understanding of a multidimensional aspect of psychosocial problems to the development of psychopathology (anxiety, depression) for university students in Uganda. It was hypothesized that there is no relationship between exposure to psychosocial problems and the development of psychopathology. This cross-sectional study was a secondary analysis of data from the PhD study on development and validation of an instrument to measure psychosocial problems of university students. The University Students Evaluation of Psychosocial Problems (USEPP) instrument was used to evaluate psychosocial problems. The two symptoms of psychopathology denoting common mental disorders were measured using the Hopkins Symptom Checklist 10 (HSCL-10). Regression analysis was performed to establish the relationship between psychosocial problems and psychopathology. The findings of this study revealed that students having psychosocial problems were significantly related to the development of psychopathology. The findings highlight to the need to put intervention measures to address the students’ psychosocial problems and mental health disorders by putting counselling infrastructure in institutions of learning to address the mental health needs of the students.Item A qualitative study of caregivers’ expectations and communication desires during medical consultation for sick children in Uganda(Patient education and counseling, 2011) Kiguli, Sarah; Mafigiri, David; Nakigudde, Janet; Dalen, Jan van; Vleuten, Cees van derLittle data exist on patients’ expectations and communication desires during medical consultation in Non-Western settings. We conducted a qualitative study to compare expectations and communication desires of sick children’s caregivers at Mulago Hospital, Uganda, to those of patients in Western countries. Methods: Three Focus Group Interviews and three Key Informant Interviews were conducted with 24 caregivers of sick children in Mulago Hospital Kampala, Uganda. An interview guide adapted from the Calgary-Cambridge Guide was used to conduct focus group and Key Informant Interviews. Two investigators worked independently to review transcripts and analyse them for content and emerging themes. Results: Caregivers of sick children in Mulago Hospital expect attending doctors to build a relationship with them, by demonstrating the verbal and nonverbal skills outlined in the CCG including maintaining eye contact, using appropriate gestures and voice during communication, and being nonjudgmental. Conclusion: The communication needs and expectations of caregivers of sick children in Mulago Hospital are similar to those of patients and caregivers in Western countries. Practice implications: The CCG can be used as a training guide to enhance the communication skills of current and future doctors in Mulago Hospital.Item Transportability of an Evidence-Based Early Childhood Intervention in a Low-Income African Country: Results of a Cluster Randomized Controlled Study(Prevention Science, 2017) Huang, Keng-Yen; Nakigudde, Janet; Rhule, Dana; Gumikiriza-Onoria, Joy Louise; Abura, Gloria; Kolawole, Bukky; Ndyanabangi, Sheila; Kim, Sharon; Seidman, Edward; Ogedegbe, Gbenga; Brotman, Laurie MillerChildren in Sub-Saharan Africa (SSA) are burdened by significant unmet mental health needs. Despite the successes of numerous school-based interventions for promoting child mental health, most evidence-based interventions (EBIs) are not available in SSA. This study investigated the implementation quality and effectiveness of one component of an EBI from a developed country (USA) in a SSA country (Uganda). The EBI component, Professional Development, was provided by trained Ugandan mental health professionals to Ugandan primary school teachers. It included large-group experiential training and small-group coaching to introduce and support a range of evidence-based practices (EBPs) to create nurturing and predictable classroom experiences. The study was guided by the Consolidated Framework for Implementation Research, the Teacher Training Implementation Model, and the RE-AIM evaluation framework. Effectiveness outcomes were studied using a cluster randomized design, in which 10 schools were randomized to intervention and wait-list control conditions. A total of 79 early childhood teachers participated. Teacher knowledge and the use of EBPs were assessed at baseline and immediately post-intervention (4–5 months later). A sample of 154 parents was randomly selected to report on child behavior at baseline and post-intervention. Linear mixed effect modeling was applied to examine effectiveness outcomes. Findings support the feasibility of training Ugandan mental health professionals to provide Professional Development for Ugandan teachers. Professional Development was delivered with high levels of fidelity and resulted in improved teacher EBP knowl-Item Use of task-shifting to scale-up child mental health services in low-resource Ugandan schools: role of contextual factors on program implementation(Implementation Science, 2015) Huang, Keng-Yen; Nakigudde, Janet; Brotman, Laurie MillerChildren in Sub-Saharan Africa (SSA) are burdened by significant unmet mental health needs, but this region has limited access to mental health services to address these needs. Despite the success of numerous interventions for promoting child mental health, most evidencebased programs (EBPs) are not available in SSA. This study utilizes a task-shifting strategy and trains teachers as community health workers (CHWs) to utilize EBP strategies and provide basic child mental health services in schools. This paper focuses on two implementation objectives: 1) investigating the transportability of an EBP (ParentCorps-a school-based mental health program) from a developed country to a SSA country-Uganda by evaluating quality of implementation; and 2) studying the influences of contextual factors (i.e., agency setting, individual characteristics) on implementation processes and outcomes (e.g., CHWs’ level of engagement and utilization of EBP strategies).Item “What are you carrying?” Experiences of mothers with preterm babies in low-resource setting neonatal intensive care unit: a qualitative study(BMJ open, 2021) Namusoke, Fatuma; Sekikubo, Musa; Namiiro, Flavia; Nakigudde, Janetborn preterm often have challenges in feeding, temperature control and breathing difficulty and are prone to infection during the neonatal period. These usually necessitate admission to the neonatal intensive care unit (NICU). Admission to NICU disrupts the mother– baby bonding. Objective This study explored the lived experiences of mothers with preterm babies admitted to NICU in a low-resource setting. Study design This was a qualitative study where 16 participants took part in indepth interviews and 35 in focus group discussions. We included mothers who delivered and were caring for preterm babies at the NICU of Mulago National Referral Hospital. Study setting Data were collected from a public hospital, which works as a district and national referral hospital located in the capital of Uganda. Participants Fifty-one mothers with preterm babies in the NICU were sampled and recruited after informed consent. Data were analysed using manual thematic analysis. Results There were six themes on the experiences of mothers of preterm babies in NICU: constant worry and uncertainty about the survival of their babies, baby feeding challenges, worries of discharge, communication gaps between mothers and nurses, community acceptability and disdain for preterm babies, and financial challenges. Conclusions and recommendations Mothers of preterm babies admitted to NICU in a low-resource setting still need a lot of support other than the medical care given to their babies. Support groups in the hospital and community are recommended to help in dealing with these challenges.