“When they stop coming, we lose them”: a qualitative study assessing health workers’ experiences on treatment default during outpatient therapeutic care for severe acute malnutrition at Gulu regional referral hospital, Uganda

Abstract

Background

Outpatient therapeutic care (OTC) programs are essential for managing severe acute malnutrition (SAM) among children under 5 years. However, default rates in northern Uganda remain high- reaching up to 21.9%. This study explored the experiences of health workers delivering OTC services on outpatient therapeutic care treatment default at Gulu regional referral hospital (GRRH).

Methods

This was a qualitative descriptive study that employed phenomenology. Semi structured interviews were conducted with nine purposively selected health workers. All interviews were transcribed verbatim and analyzed thematically.

Results

Six core themes emerged from the data analysis: organization of the OTC program, causes of treatment default, consequences of default, management and prevention strategies, programmatic challenges, and recommendations for program improvement. Many health workers described multiple drivers of default, including structural and systemic barriers (e.g., long distances, transport costs, RUTF stockouts, staff absenteeism, and seasonal farming), caregiver-level challenges (e.g., Domestic violence, long distances, transport costs, family separation, poverty, seasonal farming, inadequate social support, and cultural beliefs), health literacy gaps (e.g., misinformation, misconceptions and negligence), and child-level clinical complications (comorbidities e.g., HIV, TB, cerebral palsy).

Conclusions

Outpatient therapeutic care treatment default is driven by a complex intersection of health system and structural limitations, caregiver socio-economic challenges, and child-related factors. Addressing these requires strengthening defaulter tracing via systematic tracking and community follow up, decentralizing OTC services to lower level facilities with dedicated staff, and ensuring consistent RUTF supply, staffing, and clinic schedules.

Background

Severe acute malnutrition (SAM) is a major public health concern, contributing to over 400,000 child deaths annually and affecting nearly 19 million children under five globally [1]. The burden is disproportionately concentrated in low-income settings, with approximately 27% of children affected in Africa and 4.8% in East Africa [2, 3]. In Uganda, an estimated 268,000 children are affected each year, with 26% of children under five stunted, 2.9% wasted, and 3.4% underweight [4, 5].

To address this burden, Uganda has scaled up outpatient therapeutic care (OTC) programs for managing uncomplicated SAM at the community level, in line with WHO guidelines on community-based management of SAM and management of SAM in infants and children [6, 7]. These programs decentralize care and provide essential interventions, including Ready-to-Use Therapeutic Foods (RUTF), routine medications, and structured follow-up for up to 60 days, after which a child is discharged as cured, non-responsive, deceased, or defaulted [5, 8].

Despite national expansion, treatment default defined as missing two consecutive follow-up visits remains a critical challenge, often reflecting systemic barriers and low caregiver engagement [9]. Default undermines recovery, increases relapse and mortality, and strains the health system due to recurrent admissions [10, 11]. The mortality rate ratio (MRR) after treatment for SAM ranges from 2.7 to 20 in Bangladesh, Kenya, Malawi and Niger [8]. Uganda’s national default rate is 19% and reaches 21.9% in the Acholi sub-region [12].

Evidence from research attributes treatment default to socio-demographic factors such as age, admission type, and care entry point, clinical factors such as HIV status, mid-upper arm circumference, and weight-for-height Z-scores, and program-related challenges such as facility distance, treatment duration, RUTF stockouts and caregiver misconceptions [13].

While most studies focus on quantitative factors associated with treatment default, there is limited qualitative evidence exploring the experiences of health workers in delivering OTC. Health workers are well-positioned to identify operational challenges and context-specific solutions. This paper explores the experiences of health workers delivering OTC services on outpatient therapeutic care treatment default at Gulu regional referral hospital (GRRH). Findings from this study are compared to current policy, practice and theory, thereby identifying causes of OTC treatment default, default management strategies, and programmatic challenge that need to be filled to improve OTC services at GRRH.

Methods

Study design

This was a qualitative descriptive study that used phenomenological approach using semi structured interviews with health workers at Gulu regional referral hospital.

Study setting

The study was conducted at GRRH, a public regional referral hospital situated in Gulu City, Northern Uganda. GRRH serves as the main referral facility for the Acholi sub-region and provides specialized pediatric and nutrition services to a large catchment population in northern Uganda of approximately 2 million people [14]. The OTC services are provided through a dedicated clinic located within the pediatric ward. The clinic operates on a biweekly schedule and delivers comprehensive care for children with uncomplicated severe acute malnutrition (SAM), including nutritional screening, Ready-to-Use Therapeutic Food (RUTF) distribution, routine medications, caregiver counselling, and scheduled follow-up visits. During the 2023/2024 financial year, the OTC unit managed approximately 690 cases of SAM, averaging about 55 children per month. Service delivery at the OTC clinic is supported by a multidisciplinary team comprising pediatricians, nutritionists, nurses, and medical officers, working collaboratively in line with national Integrated Management of Acute Malnutrition (IMAM) guidelines.

Study population and sampling

Purposive sampling was employed to identify information-rich individuals with at least one year of OTC experience. Participants were health workers directly involved in the OTC program at GRRH. Recruitment was facilitated by the hospital director and the Head of Pediatrics, who provided a list of eligible staff. Two individuals declined participation—one was on leave and the other had been transferred.

Data collection

Semi-structured interviews were conducted in English using an interview guide developed from a review of relevant literature with relevant questions and probes. Probes were used to explore key areas of interest in greater depth, allowing participants to share experiences freely. The guide was piloted with three nutritionists from Lacor Hospital, a regional nonprofit referral facility in the same region.

All interviews were conducted face-to-face in a private setting, ensuring confidentiality and participant safety. Memos and analytical notes were taken throughout to capture reflections and emerging patterns. With informed consent, all interviews were audio-recorded, transcribed verbatim, and independently verified for accuracy. Transcripts were anonymized and returned to participants for member checking. Data collection continued until there was repetition of similar answers from the respondents. The decision to conclude data collection was made collaboratively by the authors. Interviews lasted between 19 min 30 s and 42 min 28 s, with an average duration of 29 min 21 s. Participants were selected to reflect variation in age, gender, cadre, and years of service, enabling a comprehensive exploration of health worker experiences in OTC delivery.

Data analysis

Data was analyzed manually using inductive thematic analysis guided by Terry et al. 2017 [15]. This involved familiarization, coding, theme development, review, and reporting. Transcripts were read repeatedly, and initial codes were developed inductively. Codes were grouped into themes through iterative discussion among the research team. Key themes and the analytic framework were refined collaboratively and validated through participant feedback to ensure credibility. Data interpretation was further strengthened through peer debriefing and team consensus. The research team comprised a principal investigator with clinical expertise in malnutrition programming, a public health specialist with doctoral training and extensive experience in qualitative research implementation, and a nutritionist with professional expertise in the management of severe acute malnutrition.

Ethical approval

Ethical approval was obtained from the Gulu University Research Ethics Committee (GUREC), approval number GUREC-2024-977. Written informed consent was obtained from all participants.

Results

Characteristics of study participants

Nine health workers participated in the study, comprising five females and four males aged 27–56 years (mean: 36 years). The majority were nutritionists (n = 4), while others included medical officers, nurses, and a pediatrician. Most held diploma or bachelor’s degrees, with one participant possessing a master’s degree. Work experience ranged from 1.6 to 11 years (mean: 4 years). Interview durations ranged from 19 to 42 min. Characteristics of participants are presented in Table 1.

Table 1.

Characteristics of participants

Id	Age	Gender	Cadre	Position	Qualification	Duration of employment
01	32	Female	Nutritionist	Nutritionist	Bachelor of science in human nutrition and dietetics	4 years
02	51	Male	Nutritionist	Senior nutritionist	Bachelor of science in human nutrition and dietetics	11 years
03	34	Male	Medical officer	Medical officer	Bachelor of medicine and bachelor of surgery	1.6 years
04	38	Female	Pediatrician	Pediatrician	Masters of medicine in pediatrics and child health	7 years
05	29	Male	Nutritionist Assistant	Nutritionist Assistant	Diploma in human nutrition and dietetics	3 years
06	27	Male	Nutritionist Assistant	Nutritionist Assistant	Diploma in human nutrition and dietetics	3 years
07	56	Female	Assistant nursing officer	Nutrition ward in charge	Diploma in nursing	4 years
08	29	Female	Enrolled nurse	Ward nurse	Certificate in nursing	1.6years
09	29	Female	Enrolled nurse	Ward nurse	Certificate in nursing	1.6 years

Key findings

Six core themes emerged from the data analysis: (1) organization of the OTC program (2), causes of OTC treatment default (3), consequences of treatment default (4), default management and prevention strategies (5), programmatic challenges, and (6) recommendations for program strengthening.

Theme 1: organization of the OTC program

This theme describes how OTC services are structured and delivered.

Structured OTC program days

Participants reported a fixed schedule with distinct days for new admissions and return visits, ensuring systematic service delivery.

“For the newly identified, we conduct the OTC program from Monday to Friday. And those who are returning for their visits, we hold the clinic on Tuesday and Thursday every week.” (Interview 01)

Comprehensive patient management

OTC care involved assessment, appetite testing, nutritional counselling, RUTF provision, HIV/TB screening, deworming, referrals, and regular monitoring.

“We do the anthropometry measurement to find out if the child is really malnourished… we do what is called an appetite test… when the child passes, we enroll the child on the programme.” (Interview 06)

Theme 2: causes of OTC treatment default

This theme explores the multidimensional barriers to treatment adherence.

Structural and systemic barriers

Long distances, transport costs, RUTF stockouts, staff absenteeism, and seasonal farming interfered with clinic attendance.

“And then the other factor is stockout of supplies. There are times parents come, they don’t find supplies… like plumpy nut. And if they come once, twice, they don’t find it, the next time they will choose not to come back.” (Interview 04)

Caregiver socio-economic constraints

Participants mentioned Domestic violence, family separation, poverty, inadequate social support, cultural beliefs (e.g., attributing illness to witchcraft), misuse of RUTF, including inappropriate sharing among siblings and, in certain instances, sale of therapeutic products. were major deterrents.

“Because of GBV also at home, makes them to abandon their children, and most of these children are with their grandmothers… not the true parent.” (Interview 02)

“Number one, we have recorded scenarios where caretakers per se go ahead and misuse the therapeutic feeds. Actually, I can confidently tell you the RUTF is the most abused therapeutic feed countrywide, not just in this region… households where there are a number of young children… they tend to share, and that directly impacts on the treatment.” (Interview 05)

Caregiver health literacy gaps

Caregiver negligence, misinformation causing fear of hospitalization, and misconceptions about the program led to dropouts.

“We also have reasons of what I would call negligence from the caretakers. This has been common to patients of children who have been taken care of by the stepmoms where they will not follow the instructions that are given by the healthcare workers. … under the point of ignorance, some patients think that when they come for OTC, again they will be hospitalized.… The other pattern… low education of family members or caretakers. Most of them are uneducated, and they may not follow the instructions.” (Interview 03)

Child clinical factors

Comorbidities such as HIV, TB, and cerebral palsy and the lack of consistent treatment made management complex and contributed to caregiver fatigue.

“Some of them have underlying problems, yes, that can make them again relapse. Because cases like, you know, TB can reoccur. We even know HIV is a problem. And then we have conditions like CP—cerebral palsy. These are cases that normally easily default. And you know, things like cerebral palsy is a very, very difficult condition to manage because this effect is for life. So, the attendants tend to, you know, get tired and eventually, you know, they just—let me say—they desert the baby and leave it there to die.” (Interview 07)

Theme 3: consequences of OTC treatment default

Morbidity

Health workers mentioned that children defaulting from OTC treatment frequently experience relapse, deterioration of nutritional status, intensified symptoms, and heightened vulnerability to opportunistic infections due to compromised immunity associated with malnutrition:

“So, if they default on treatment and yet they are on the way to recovery, there is a possibility they can reverse back to their initial condition and they can even present with even more severe symptoms. Two, they can even develop other opportunistic infections because malnutrition is a state of immunosuppression. So, meaning you are prone to getting other infections or opportunistic infections along the way.” (Interview 04)

Life threatening complications

Participants mentioned that default increases the risk of serious, life-threatening complications. Delays in re-engagement with care often lead to severe medical conditions and, in some cases, death.

“And then they actually get the medical complications, which will now be life-threatening. Others do die, especially if they realize that the child has developed medical complications late and they don’t come early. Others die.” (Interview 01)

Prolonged hospitalization

Health workers noted that children readmitted following treatment default face extended hospital stays, require more intensive medical management, and incur higher treatment costs:

“So, I would conclude by saying the repercussions that we have seen from treatment default from OTC is the issue of prolonged hospital stay.” (Interview 03)

Developmental impacts

Participants mentioned that untreated malnutrition from default has lasting effects, including stunted physical and cognitive growth. These developmental deficits can persist into adulthood, perpetuating a transgenerational cycle of malnutrition.

“Others may slip away with it and remain normal, but they would be mentally retarded… And I mean, if it is a girl, the malnutrition will be carried on now to teenage age, to motherhood, and the cycle of malnutrition will automatically continue.” (Interview 01)

Theme 4: management and prevention of default

This theme describes interventions aimed at improving treatment continuity.

Case management approaches

Health workers used phone calls and home visits to trace and re-engage defaulters.

“We conduct home visits for our patients in care. So, if you miss an appointment, we record you down and then we conduct a home visit. See what is happening. Is everything okay? Is the child still there? Have you shifted? And then we refer you back to the hospital now.” (Interview 01)

Preventive measures

Preventive strategies included health education, community outreach, and linking patients to nearby OTC centers.

“Then the other one is if you’re coming from far away, we attach you to a nearby health facility which has OTC services so that we transfer you there. You start getting the services from there. Instead of you having to come back, travel a long distance and sometimes get a knock over. And I would say the one that is working best for us right now is transferring them to the nearest health facility.” (Interview 01)

Theme 5: OTC program challenges

This theme highlights resource, health worker shortages, lack of sufficient space (including for play as developmental support in the clinic and rehabilitation), and financial support for home visits and community sensitization affecting program effectiveness.

Resource limitations

Participants noted shortages of RUTF, limited funding for education/outreach, insufficient staff, and inadequate infrastructure.

“Then on the side of the hospital, the challenges which we’ve been experiencing mainly have to do with supplies. So, we’ve had stock outs of supplies, plumpy nuts which directly is mainly utilized in the OTC setting. So sometimes patients come, they don’t find them.” (Interview 04)

Not using data collected

Participants mentioned that despite routine data collection, there were challenges in using data to guide decision-making and improve program implementation.

“And I think also we’ve had challenges with the use of, the utilization of the data that we have. We are actually not utilizing it to inform us so that we can actually improve on our intervention.” (Interview 04)

“We are yet losing so many of the children because… we have very few centers providing the services… If we can decentralize some of these services… to health center IVs, health center IIIs… they are able to access it from their nearest facility.” (Interview 04)

Theme 6: recommendations for program strengthening

This theme captures proposed solutions to reduce default and improve care delivery.

Strengthening program resources and capacity

Participants called for increased staff, stable RUTF supply, supportive supervision, updated guidelines, and peer learning.

“And the other issue that I want to talk about is the issue of strengthening the lower facilities. … we can do support supervision and strengthen the lower facilities to improve on their nutritional clinics. I think the program can support us in issues of enabling us to have still continuous medical education in nutrition, having updated guidelines in management of malnutrition…we can do exchange visits…with centers of excellence that are performing well in management of malnutrition, especially OTC…and come back with new knowledge that we have learned.” (Interview 03)

Enhancing preventive interventions

Recommendations included integration of WASH, breastfeeding, complementary feeding, and community sensitization.

“Okay, number one recommendation, as I told you, health education. Then also integrating the community members in the care, the VHTs, the LCs, so that they are there with these people in the community, even when they are home.” (Interview 09)

Improving Follow-Up and decentralization

Participants proposed digitalizing patient records and extending OTC services to lower-level health facilities.

“So, me, I think one recommendation is proper follow-up of these patients… doing proper follow-up will be one of the things.” (Interview 08)

Discussion

Treatment default undermines the effectiveness of outpatient therapeutic care (OTC) programs by increasing child morbidity and mortality, prolonging recovery, and inflating healthcare costs [8, 10]. In this study documenting health workers’ experiences delivering OTC services on outpatient therapeutic care treatment default at Gulu Regional Referral Hospital (GRRH). we found six key themes: organization of the OTC program, causes and consequences of default, management and prevention strategies, programmatic challenges, and recommendations for program improvement.

Previous literature has highlighted structural, clinical, and socio-demographic factors influencing SAM treatment default in low-resource settings, yet limited studies have qualitatively captured frontline health worker perspectives. This study adds contextual insights into health system constraints, caregiver-level challenges, and operational barriers in OTC delivery.

Health workers described the organization of the OTC program as structured and aligned with WHO guidelines, offering standard services such as anthropometry, appetite testing, RUTF provision, HIV/TB screening, deworming, immunization referrals, and caregiver counselling. This reflects adherence to Integrated Management of Acute Malnutrition (IMAM) protocols, which emphasize biweekly follow-up and community-based management of uncomplicated SAM [7, 16].

Despite a structured service, multiple barriers to OTC treatment adherence were reported. Structural factors including long distances to health facilities, high transport costs, and seasonal agricultural demands were major contributors to default, consistent with evidence from Yemen, Zambia, and India [17–19]. Seasonal farming activities uniquely disrupted scheduled follow-ups in this setting. Systemic issues such as frequent RUTF stockouts and staff absenteeism further eroded caregiver trust and program reliability. Similar constraints have been documented in Ethiopia and Yemen, where therapeutic supply gaps and workforce limitations directly impacted treatment continuity [17, 20].

The study’s findings align with the Health Belief Model (HBM), particularly the construct of perceived benefits versus perceived barriers. The HBM theorizes that people’s beliefs about whether they are susceptible to disease, and their perceptions of the benefits of trying to avoid it influence their readiness to act. People are ready to act if they believe they are susceptible to the condition (perceived susceptibility), believe the condition has serious consequences (perceived severity), believe taking action would reduce their susceptibility to the condition or its severity (perceived benefits), believe costs of taking action (perceived barriers) outweigh the benefits, are exposed to factors that prompt action (cue to action) and are confident in their ability to successfully perform an action (self-efficacy. Although caregivers initially acknowledged the value of OTC services, competing socio-economic pressures and prior negative experiences diminished their perceived benefits, thereby increasing the risk of treatment discontinuation. Key caregiver-related vulnerabilities—including poverty, domestic violence, family instability, and limited social support—were frequently cited as barriers to follow-up. Additionally, stigma and cultural misconceptions about malnutrition contributed to non-adherence; some caregivers feared hospitalization, while others interpreted early clinical improvement as a signal to discontinue care. Low health literacy, particularly among stepmothers and guardians, further contributed to poor comprehension of treatment protocols and the chronic nature of malnutrition. These findings are consistent with existing evidence highlighting caregiver education, socio-economic adversity, and cultural beliefs as significant determinants of default in community-based SAM programs [10, 13, 18].

Health workers also highlighted the vulnerability of children with underlying comorbidities including HIV, TB, and cerebral palsy who were more likely to default due to prolonged treatment needs and caregiver fatigue. While not always captured in quantitative analyses, these insights align with findings from Zimbabwe and Ethiopia that associate chronic illness with reduced program adherence [21, 22].

The consequences of treatment default described by participants were profound, including increased morbidity, prolonged hospitalization, life threatening complications, and developmental impacts. These findings are consistent with global evidence linking default to elevated mortality risk, morbidity, prolonged hospitalization and long-term developmental and intergenerational consequences of untreated SAM [2, 10, 11, 23].

To address these challenges, health workers implemented case management and preventive strategies, including follow-up calls, home visits, community outreach, coordination with Village Health Teams (VHTs) and linkage to the nearest health centres. These practices are aligned with global recommendations advocating for decentralized and community-embedded interventions to improve adherence and reduce default [8, 16, 24].

Nonetheless, significant programmatic challenges persist. Resource shortages including therapeutic foods, staff, infrastructure, and funding for outreach limit the scope and effectiveness of the OTC program. The misuse of RUTF at the household level and underutilization of program data further hinder service quality and responsiveness. These systemic constraints echo broader concerns across low-resource settings regarding the sustainability and scalability of community-based SAM programs [25, 26].

Participants provided key recommendations for strengthening the OTC program, including: improving supply chain consistency; investing in human resources and infrastructure; integrating nutrition-sensitive interventions such as WASH, household food security, and health education; and decentralizing services to lower-level health facilities to improve accessibility. These suggestions are consistent with WHO’s framework for health systems strengthening and underline the need for a coordinated, multi-sectoral approach [5, 27].

We propose three priority interventions to address OTC treatment default at GRRH. First, enhancing defaulter tracing mechanisms through systematic use of appointment registers, phone-based follow-up, and linkage with Village Health Teams would enable early identification and re-engagement of children at high risk of default. Second, decentralization of OTC services to lower-level health facilities, including Health Centre II level, with trained nutrition focal persons attached to these facilities, would reduce travel distance, transport costs, and opportunity barriers that were key drivers of default. Third, strengthening service reliability, particularly ensuring consistent availability of RUTF, adequate staffing, and predictable clinic schedules, is essential to maintaining caregiver trust and treatment continuity. These interventions are feasible within existing IMAM structures and are likely to be applicable to other regional referral hospitals and lower-level facilities across Uganda.

Strengths and limitations

This study drew on in-depth insights from a multidisciplinary team of OTC health workers with varied years of service. Its strength lies in capturing perspectives in a high-burden setting. However, findings are drawn from a single facility and may not be generalizable to other contexts. The small sample size and absence of subgroup analysis may limit the breadth of interpretation. Nonetheless, saturation was achieved, and diverse cadres were included, providing a rich understanding of the complexities shaping treatment adherence.

Conclusions

Health worker experiences at GRRH reveal that OTC treatment default is influenced by a complex intersection of structural, clinical, and caregiver-related barriers. While the OTC program is generally well accepted and appropriate, its implementation faces serious feasibility and fidelity challenges due to health system limitations and socio-economic vulnerabilities. To optimize SAM treatment within the OTC programs in Uganda, prioritize strengthening defaulter tracing via systematic tracking and community follow up, decentralizing OTC services to lower level facilities with dedicated staff, and ensuring consistent RUTF supply, staffing, and clinic schedules. Implementing these interventions can enhance treatment retention and child survival, aligning with national health goals.

Abbreviations

OTC

Outpatient Therapeutic Care

SAM

Severe Acute Malnutrition

GRRH

Gulu Regional Referral Hospital

RUTF

Ready-to-Use Therapeutic Food

HIV

Human Immunodeficiency Virus

TB

Tuberculosis

CP

Cerebral Palsy

WHO

World Health Organization

GUREC

Gulu University Research Ethics Committee

VHT

Village Health Team

LC

Local Council

IMAM

Integrated Management of Acute Malnutrition

UDHS

Uganda Demographic and Health Survey

WASH

Water, Sanitation and Hygiene

OTP

Outpatient Therapeutic care Programme

IQR

Interquartile Range

FY

Financial Year

Authors’ contributions

PDK conceived the study, led data collection, analysis, and manuscript drafting. HN contributed to data analysis. PA and RW contributed to the study design, supervised the research process, and critically reviewed the manuscript for intellectual content. All authors read and approved the final manuscript.

Funding

This study did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

Data availability

The datasets generated and/or analyzed during the current study are not publicly available due to ethical restrictions but are available from the corresponding author upon reasonable request and approval by the Gulu University Research Ethics Committee.

Declarations

Ethics approval and consent to participate

This study received ethical approval from the Gulu University Research Ethics Committee (GUREC), under approval number GUREC-2024-977. Written informed consent was obtained from all participants before the interviews. Participation was voluntary, and participants were assured of confidentiality and the right to withdraw at any point without consequence.

Consent for publication

All participants provided written informed consent for the anonymous publication of their responses. No personal identifiers have been included in the manuscript.

Competing interests

The authors declare no competing interests.