Adherence to ready-to-use therapeutic food in older children with sickle cell anaemia and severe acute malnutrition: a mixed-methods study in a low-income setting

Abstract

Introduction

Children with sickle cell anaemia (SCA) in Sub-Saharan Africa face a higher risk of malnutrition, increasing morbidity and mortality rates. We conducted a randomised controlled feasibility trial to treat children aged 5–12 years with SCA and severe acute malnutrition (body mass index Z-score <−3.0) in Kano, Nigeria (n=108). Despite high rates of ready-to-use therapeutic food (RUTF) consumption, as measured by returned RUTF sachets, suboptimal weight gain was observed, possibly due to widespread sharing of RUTF. In this ancillary study, we aimed to identify factors influencing adherence to the RUTF.

Methods

We conducted seven focus group discussions with 55 caregivers of trial participants in the two sites participating in the trial in Kano, Nigeria. We analysed transcripts using a hierarchical coding system and an iterative inductive-deductive approach informed by Social Cognitive Theory and the biopsychosocial model.

Results

An interplay between person-level and contextual factors influenced adherence to RUTF. Caregivers’ beliefs about nutrition and malnutrition changed when they saw positive changes in their child’s health, increasing their motivation to adhere to RUTF. The male head of household and cultural beliefs increased adherence to RUTF for some mothers and were a barrier to adherence for others. Barriers to adherence included financial hardship, along with cultural norms and religious practices related to communal eating and sharing food. Caregivers employed strategies to promote adherence, including modifying food preparation and food storage practices and controlling meal timing and meal participants. Some households maintained or provided more food, while others reduced it and reallocated their savings.

Conclusion

For older children with SCA and severe acute malnutrition living in Nigeria, social-cultural context, family dynamics and strategic modifications influence RUTF adherence. Insights from this study may guide the development of tailored strategies, family education and empowerment initiatives to enhance adherence to malnutrition interventions for children with SCA.

Trial registration number

SAMS trial (NCT03634488).

WHAT IS ALREADY KNOWN ON THIS TOPIC

• Malnutrition is a critical issue for children with sickle cell anaemia (SCA). Current care standards for children with SCA often overlook malnutrition, leaving a significant gap in treatment. No studies have examined the factors influencing adherence to nutritional interventions like ready-to-use therapeutic foods (RUTFs) used to treat severe acute malnutrition in these children.

WHAT THIS STUDY ADDS

• This study increases the understanding of multifaceted factors influencing adherence to RUTF among caregivers of children with SCA and severe acute malnutrition. We highlight the interplay of caregiver’s individual beliefs, socio-cultural context and strategic modifications that shape adherence. By describing the complexity of adherence, we offer novel insights to improve adherence to RUTF-based interventions.

HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY

• The implications of this study are significant for recognising and addressing the nutritional needs of children with SCA who are also dealing with severe acute malnutrition. It emphasises the importance of a holistic and individualised approach that combines socio-cultural and economic support with nutritional interventions. Given the wide variety of experiences among caregivers, healthcare workers should identify and address the unique barriers and facilitators each family faces. The findings suggest that nutritional programmes must be flexible and responsive to improve adherence and ultimately improve outcomes. In response to these findings and our collective published experience, our clinical and research teams have integrated routine anthropometry, embedded dietitians into care and research teams, and adopted a protocol for managing malnutrition. These shifts reflect an ongoing evolution in how we recognise, prevent and treat malnutrition in this high-risk population.

Introduction

In Sub-Saharan Africa, children with sickle cell anaemia (SCA) are at an increased risk of malnutrition, which further compounds already high mortality rates.¹ Despite significant morbidity and mortality associated with SCA and malnutrition, current SCA standard care does not routinely address nutritional needs.² Given the high prevalence of malnutrition in children with SCA, nutritional interventions, such as ready-to-use therapeutic foods (RUTFs), are potential solutions for treating severe acute malnutrition.

To our knowledge, no studies have evaluated the barriers and facilitators for adherence to nutrition interventions for treating malnutrition in children with SCA. In studies in children without SCA, RUTFs have improved recovery rates from severe acute malnutrition.^{3 4} Despite nutritional adequacy, RUTF implementation has not achieved consistently high recovery rates, and suboptimal adherence may be a significant contributing factor.^{5 6} Among children and adults with HIV and severe acute malnutrition, adherence rates to RUTF prescriptions are often below 50%, hindered by factors such as aversion to the taste, consistency or smell of the RUTF product, transportation difficulties, household RUTF sharing and stigma associated with the brand ‘Plumpy’Nut’ due to its link to HIV-related malnutrition in some regions.⁷,⁹ A common challenge identified across multiple studies is household sharing of RUTF, which frequently undermines the achievement of the calorie intake goal for the affected child.¹⁰,¹³

To evaluate the feasibility of RUTF use in children with both SCA and severe malnutrition, we conducted a multicentre randomised controlled feasibility trial for managing severe acute malnutrition in children with SCA in Nigeria (SAMS trial, NCT03634488). Children aged 5 to 12 with SCA and severe acute malnutrition (body mass index (BMI) z-score <−3.0) were treated with RUTF, with or without hydroxyurea. We demonstrated the feasibility and safety of treatment.¹⁴ Additionally, 94% of the participants (n=102 of 108) gained weight, and 84% (n=91 of 108) had increased BMI z-scores over the 12-week study period. However, most participants remained in the severely malnourished category at the end of the trial. While the median return rate for empty RUTF sachets was 100% (IQR, 99.98–100), it remains uncertain whether enrolled participants consumed the prescribed amount, given the high reported sharing rates of RUTF within households (63%). Sharing of the RUTF could have contributed to the suboptimal weight gain and other nutritional outcomes. To understand the barriers and facilitators influencing adherence to the RUTF, we conducted focus group discussions with caregivers of SAMS trial participants.

Methods

Study design and setting

We performed a mixed-methods study comprising focus group discussions (qualitative) and an analysis of demographic data (quantitative). The study was conducted at Murtala Muhammad Specialist Hospital (MMSH) and Aminu Kano Teaching Hospital (AKTH) in Kano, Nigeria, a predominantly Muslim region.¹⁵ The institutional review boards of AKTH, MMSH and Vanderbilt University Medical Center granted ethical approval for the study.

Semistructured focus group discussions led by trained facilitators were held with primary caregivers of participants of the randomised controlled feasibility trial for managing severe acute malnutrition in children with SCA conducted in Nigeria (SAMS trial, NCT03634488).¹⁴ The SAMS trial enrolled 110 children aged 5–12 years, each with laboratory-confirmed SCA (HbSS or HbS-beta0 thalassaemia) and uncomplicated severe acute malnutrition, defined by a BMI z-score below −3.0 according to the WHO growth standards.¹⁶ During the 12-week intervention period, participants were randomly assigned to receive supplemental RUTF, providing 500–1000 daily calories, either alone or combined with a fixed dose of hydroxyurea (20 mg/kg per day). Caregivers also received general nutrition education, and 24-hour dietary recalls were conducted to monitor intake of other foods. Of the 110 children enrolled, 108 completed the trial and were included in the final analysis.

Recruitment of caregivers for focus groups

Our goal was to recruit eight caregivers (min, 6; max, 10) per focus group discussion with a goal of two to four focus groups at each of the two sites^{17 18} to reach thematic saturation, a point in data collection when no new themes emerge. Caregivers were recruited for the focus group discussion at SAMS research visits or via phone call if their child had already exited the SAMS trial. Each caregiver participated in only one focus group, and no repeat interviews or additional focus group discussions were conducted with the same individuals. No caregivers refused to participate or dropped out.

We will refer to the children who participated in the SAMS trial and whose household was included in the focus groups as ‘SAMS participants’ and the primary caregivers who participated in the focus group discussions as ‘caregivers’. SAMS participants who no longer met the classification for severe acute malnutrition, as indicated by a BMI z-score >−3.0 are ‘Improved’, while those considered ‘Persistently Malnourished’ remained severely malnourished, with a BMI z-score <−3.0.

Research team and reflexivity

The focus group discussions were conducted by Dr. Safiya Gambo, MBBS, MPH at MMSH and by Dr. Halima Kabir, MBBS, FMCPaed, MPH at AKTH. Both were female paediatricians with experience working with patients with chronic illnesses and well-versed in qualitative research methods. No prior relationship with the participants was established prior to the SAMS study. Participants were fully informed about the facilitator’s role as a researcher and the study’s objectives. No individuals other than the participants and researchers were present during the focus group discussions. The researchers acknowledged their potential biases and took steps to bracket their assumptions.

Focus group procedures

The focus group discussions were conducted using a semi-structured interview guide developed using input from healthcare providers who interact with children with SCA and severe acute malnutrition. Each moderator was provided with a guide with five categories of questions and probes. The moderator asked open-ended questions using the guide, allocating 20 min to discuss each category. These categories included (1) the perceived significance of nutrition; (2) daily practices of food sharing and sharing of the RUTF; (3) strategies that were effective or ineffective in preventing sharing of the RUTF; (4) the influence of the RUTF on food habits or other facets of daily life; and (5) suggestions for the improvement of future malnutrition studies.

Caregivers consented on arrival. A moderator facilitated the discussion using the moderator guide. Each focus group began with an overview of its purpose, acknowledgement of digital recording devices, assurance of anonymity and encouragement for open sharing of opinions and experiences. Each focus group session lasted approximately 120 min. Caregivers received compensation for time and travel at a standard rate, applied uniformly across all participants to minimise potential bias. Conducted in the Hausa language (native to northern Nigeria), the sessions were digitally recorded and professionally transcribed and translated into English by the Department of Linguistics and Foreign Languages at Bayero University Kano. No field notes were made during or after the focus group discussions.

Patient involvement

Neither patients nor their caregivers were involved in the design of this research. During focus group discussions, responses by caregivers to guided open-ended questions were informed by their priorities, experience and preferences. Collaboration between health experts in the USA and Nigeria determined study participants and objectives. Focus group transcripts were not returned to caregivers, and caregivers did not provide feedback on preliminary findings.

Data management and Analysis

Qualitative data coding and analysis was managed by the Vanderbilt University Qualitative Research Core by following the consolidated criteria for reporting qualitative research guidelines, an evidence-based qualitative methodology.¹⁹

A hierarchical coding system was developed and refined using the focus group guide and a preliminary review of the transcripts. Major categories included (1) participant characteristics; (2) attitudes and beliefs; (3) communication; (4) needs/suggestions; (5) barriers and facilitators; (6) emotions; (7) SCA and malnutrition specifics; (8) mealtime and nutrition specifics; (9) foods; (10) change over time; and (11) characteristics of intervention. Major categories were further divided into subcategories, and some of the subcategories had additional levels of hierarchical division. Definitions and rules were written for coding categories.

To establish coding reliability, two experienced qualitative coders independently coded one focus group transcript totalling 179 lines. Coding was then compared, and all discrepancies were resolved. After establishing reliability in using the coding system, the two coders divided and independently coded the remaining six transcripts. Each line was treated as a separate quote and assigned up to 11 different codes. Coded transcripts were combined and sorted by code. Quotations and codes were managed using Microsoft Excel 2016 and SPSS V.28.0.

The analysis consisted of interpreting the coded quotes and identifying higher-order themes using an iterative inductive-deductive approach.²⁰ The iterative inductive-deductive approach aimed to develop a conceptual framework that is theoretically informed while integrating resultant content from the qualitative data. Deductively, the analysis was guided by the Social Cognitive Theory,²¹ wherein behaviour is influenced by the interaction of personal, environmental and behavioural factors. Additionally, we were guided by the biopsychosocial model, which suggests that biological, psychological and social factors interact and influence each other, and therefore, all three should be considered when providing healthcare treatment.²² Inductively, the conceptual framework’s content was derived from the qualitative data.

Findings

Participant characteristics

We conducted seven focus group discussions: four at MMSH and three at AKTH. The sessions at MMSH involved 34 caregivers (in groups of 10, eight, eight and eight), while the sessions at AKTH involved 21 caregivers (in groups of seven, seven and seven), for a total of 55 unique caregivers participating in the focus group discussions. Among these focus group discussion participants, 21 were caregivers of improved SAMS participants, and 34 were caregivers of persistently malnourished.

Table 1 summarises the baseline and follow-up characteristics of the SAMS trial participants whose caregivers participated in the focus groups. These child-level data are included to provide context regarding differences in age and anthropometry between the two groups discussed in the qualitative analysis. The average age of the SAMS participants (n=55) was 10.1 years (range: 8.6–11.4), and the median number of adults in the household was 3.0 (range: 2.0–4.0). Improved participants were significantly younger and had fewer adults in their household (table 1). At both baseline and 12 weeks, z-scores for height-for-age, weight-for-age and BMI were significantly lower (p<0.05) in the persistently malnourished group compared with the improved group (table 1).

Table 1. Descriptive child and household characteristics of children who participated in the SAMS trial and whose caregiver participated in the focus groups.

Variable	Total cohort (n=55)	Improved (n=27)	Persistently malnourished (n=28)	P value*
Age, years, median (IQR)	10.1 (8.6–11.4)	9.4 (8.1–10.5)	10.9 (9.9–11.7)	0.002
Sex, female, n (%)	28 (50.9)	15 (55.6)	13 (46.4)	0.498
Height-for-age z score at baseline, mean (SD)	−2.2 (1.1)	−1.8 (0.9)	−2.6 (1.1)	0.003
Height-for-age z score at 12 wks, mean (SD)	−2.2 (1.1)	−1.8 (0.9)	−2.6 (1.1)	0.004
Weight-for-age z score at baseline, mean (SD)	−3.5 (0.7)	−3.3 (0.7)	−3.8 (0.6)	0.003
Weight-for-age z score at 12 wks, mean (SD)	−3.2 (0.8)	−2.7 (0.7)	−3.6 (0.6)	<0.001
BMI z-score at baseline, mean (SD)	−3.7 (0.5)	−3.5 (0.4)	−3.9 (0.5)	0.002
BMI z-score at 12 weeks, mean (SD)	−3.1 (0.7)	−2.5 (0.4)	−3.6 (0.4)	<0.001
Head of Household education, n (%) (n=54)				0.829†
None/primary/junior secondary	9 (33.3)		11 (40.7)
Senior secondary/OND	16 (59.3)		15 (55.6)
University/professional	2 (7.4)		1 (3.7)
Primary caregiver marital status, married, n (%)	26 (96.3)		23 (82.1)	0.193†
Adults in household, median (IQR)	2.0 (2.0–4.0)		3.0 (2.0–4.0)	0.046
Sibling(s) enrolled in study, n (%)	11 (40.7)		5 (17.9)	0.062
Household food security, n (%)				0.361†
Secure	4 (14.8)		1 (3.6)
Low security	8 (29.6)		8 (28.6)
Very low security	15 (55.6)		19 (67.9)

^*χ2 test for counts and Mann-Whitney U test for medians.

^†Fisher’s exact test.

OND, ordinary national diploma.

Conceptual framework

The conceptual framework (figure 1) illustrates the interaction between person-level and contextual factors that influence adherence to the RUTF. On the left, embedded circles represent the interaction between person-level factors and the broader social context. In the middle, arrows represent strategies that may influence outcomes. Together, these influence adherence to the intervention and subsequent maintenance strategies. In the following sections, we discuss the key person-level, context-level and strategy-oriented themes, detailing subthemes and providing supporting quotes within tables24.

Figure 1. Interplay between person-level, contextual-level and strategic factors influencing adherence to supplemental ready-to-use therapeutic food.

Table 2. Person-level themes supported with quotes from caregivers in focus group discussions.

Theme	Quotes
Nutrition Beliefs	‘Well, they are not delicacies. It’s body-nourishing food. Even the Hausas wanted to be clever. They will refer to fruits as “kayan marmari” (things desired once in a while), and they’re not. A child needs them. We also need them in our body’. ‘Honestly, before we started eating it, I didn’t associate it with malnutrition, but after we started eating the [RUTF], I could see its effect and believed it was caused by malnutrition’. ‘It is good to show us what are the complications of that disease because may be from then we might be very cautious about the disease. I never thought it was a malnourishment problem; my stake was that the child was having low weight which is below a required weight for his age only, so that we didn’t understand that it was an illness’.
Outcome expectancies	‘From the time my child started consuming the [RUTF] to the mid-term of it when my child moves out none will look at him and thinks he has sickle cell disease because he turns to normal like every other child, it looks like he was better than other children because he became fatty and healthy….’ ‘The measure is going to the hospital, and since we have been going to the hospital with this girl, by God she has stopped having fever. She doesn’t complain about pain anywhere. And she eats well, as God pleases!’ ’When she started eating [RUTF], I noticed how her body improves, I concurred that she needs a special diet. [She] could not write well at school, her teacher complained to me that she was left behind. But now she writes and her teacher commends our efforts. This is one of the impacts of [RUTF]. She has gained weight; she is energetic’. ‘I just observed that since he started eating the [RUTF], it seems to increase their IQ, because it is said that [children with sickle cell disease] are intelligent, but I think mine have a problem; they are not good in school. But now he really understands better than his brother because as long as they are taught in school and come with their homework, you will see that immediately you show him how to do it, he will do it, but you will keep struggling with his brother before he finishes it. Honestly, there is improvement’.
Self-efficacy	‘Now, for example, for those of us who have children with sickle cell disease, most of the men sometimes don't consider the sickle cell disease as something to worry about. Whether it’s the medicine or the money to buy it, it’s all the same. If they happen to give you the money for food and whatever God made them to give, they don’t have to give you the money that will be enough for you to be buying the body nourishing food’. ‘Yeah, actually, if the person is a responsible person, he will take all of his familial responsibilities, but to someone, you will see that even if he is able, it’s not every time he satisfies his family’s needs, and the mother is the one always living with the child and mother-child bonding exists, therefore, it’s good for her to look on what you can do for your child without much dependent on his father, the day he is able can do and you too when you are able you can also do, don’t ever wait for his father to do everything’.

RUTF, ready-to-use therapeutic food.

Table 4. Strategy-oriented themes supported with quotes from caregivers in focus group discussions.

Theme	Quotes
Preparation modifications	‘Honestly, when five were recommended for her, she, honestly, couldn’t eat these five in a day. At the end, we had to come back with some of it. Then she was allowed to be eating two pieces, because if she was to eat more than two, she would hardly be able to eat. That’s why I had to complain that she can’t eat these five. She couldn’t even finish a single piece easily when I feed her. I told you, if I were to sit her down, by God, we will spend 3 hours! Before she can finish it, we have to… So that’s why when I was told to be making pap for her, I realised it’s better for her. “Whenever I make a cup of custard for her, if I turn one inside, she will drink and finish it”.’ ‘There are some tricks used in compelling them to eat. We prepared a pap in the morning and mixed half sachet, to some extent a whole sachet and then give them. This makes them drink it all without leftovers…’ ’Well, when we first started receiving the [RUTF], didn’t like it. Then I realised a trick in which I mix in for a gruel. ”That way she eats it so much that her weight reaches the desired level”.’ ’Actually, we have a strategy to trick a child into taking food along with the [RUTF). This is because sometimes you may give it to the child and he becomes adamant. Therefore, I ceased to give him like that. I resorted to mixing it in the food or biscuit or bread, including both the flour cake and doughnut, and he eats it. The strategy we use in food is that the food is the same, except that we only add vegetables, beans or fish parts if available, or eggs if available. It helps him with his health’.
Storage modifications	‘When I first received it, I kept it in my cupboard. As she realised it, when my sisters came, they asked her to give them, and she obliges. I scolded her on this. I then changed it to the top of the cupboard inside the bucket’. ‘Just as I was given it inside the packet, I took it to the father’s room for safe keeping. The room was isolated; no one enters the room. It was the [RUTF]’s owner going to take it himself. He knows its location, and after finishing using it, we return it to its container’. ‘I alone control her, and for fear of her relatives eating (the RUTF) I often take it to the top of the roofing for safekeeping’. ‘Whenever I bring it, honestly, I similarly receive unpleasant words. Since I saw that when she started to be given up to seventy or eighty, and the people were saying, “wow, she has been given a lot”. Therefore, on my way home, whenever I was given a carton, when I get down at the bus stop on the street, I will give a certain shopkeeper for safe keeping. I will tell him that I will send for it when it’s dark. I have a teenage son who later in the night, when it’s dark, I would tell him to go get it for me’. ‘For me, I used to hide it inside my head cover and put it under instruments; if not, I swear they will take it’.
Meal timing	‘For me, when my boy started consuming the [RUTF], it was the first thing that he eats to avoid having his stomach full of other food without eating the actual amount of the [RUTF], and he would not consume the groundnut pap too, therefore, when I served him with the product, he move to the school along with the other food in a flask so he can eat it later in the day’. ‘Well, mine was not able to eat all the sachet at once. He ate half and later time he come back and finish the remaining half. While his brother eats more than half at once, later when coming back from whereabouts, I make them sit in a row of a bed and I sat on the edge of the bed and instruct them to finish the leftovers’.
Mealtime participants	‘To be honest, I memorise a period when there is nobody in the house I give her’. ‘Well, I think is whenever you want to give, you don't have to show it in front of other children. Because they may think that this one is preferred over them. Even if you give a child something in secret, get him to eat it without them knowing. This will prevent this problem. They don’t know what we did, let alone… Well, that’s usually the case’. ‘…The measures I started taking were, first of all, I will send the children to school. Since I don't have any small children, they all go to school. I will send them and tell them to go, and that the ones eating the [RUTF] will come later’.

RUTF, ready-to-use therapeutic food.

Person

Person-level themes refer to biological and psychological factors that influence behaviour. Caregivers described their beliefs about nutrition, outcome expectancies, self-efficacy beliefs and expectations that they could successfully use the nutritional supplement. Caregivers articulated evolving beliefs about nutrition and outcome expectancies as they witnessed the positive effects of the supplement on their child’s health. Some caregivers had low self-efficacy beliefs due to limited access to money and resources, rooted in the hierarchical dynamics of their households.

Nutrition beliefs

Caregivers were probed about their beliefs concerning malnutrition and what they considered nutritious food. Some caregivers believed that SCA caused malnutrition and that nutrient-dense food would have minimal effect. This caregiver describes how SCA decreases her child’s appetite:

Yes. Like my child, for example, since when he was small when he started, this disease in his body does not allow him to eat food. So, he doesn’t eat enough of the nutritious food you can provide…

Caregivers described how the treatment changed their beliefs about SCA and malnutrition (table 2). Before treatment, some caregivers underestimated the severity of malnutrition and did not take the intervention seriously due to a lack of knowledge about nutrition and its effect on child growth and weight gain.

Caregivers had varying beliefs regarding what food was nutritious. Many caregivers described how during the study they adjusted their food to increase its nutritional value. Some caregivers described cultural barriers that made it difficult to regularly eat nutritious food, as these foods were often treated as delicacies.

Outcome expectancies

Outcome expectancies refer to the anticipated positive and negative consequences of engaging in certain behaviours. These outcome expectancies, which often include improvements in physical symptoms and cognition, were frequently discussed as motivation to adhere to the intervention (table 2). Some expectations about their adherence to the intervention were dynamic and changed over time as a function of experiences using the RUTF. As this caregiver described:

… for sure now I will protect this [RUTF] because I observed progress from it since after our discharge to home up to now she never visited Murtala Specialist Hospital and we never resumed back at all while before she doesn’t use to reach a month without absenting to school due to the illness but now we thanked God for the complete term duration she never missed a class and she participated solely in children games. Therefore, I am certainly recommending towards using the [RUTF].

Many caregivers observed gradual improvements in physical symptoms, such as increased weight, fewer illnesses or a healthier appearance resembling that of children in the community. Although most of the focus was on physical improvements, some caregivers also noticed enhancements in other areas, such as their children’s cognitive abilities and school performance.

Self-efficacy

Caregivers shared many beliefs regarding perceptions of their self-efficacy. Many caregivers felt they had little control over their circumstances, mainly due to the patriarchal structure of their households (table 2). This perceived lack of control influenced their ability to follow nutrition recommendations when the fathers were not motivated. Some caregivers expressed frustration with this dynamic and desired ways to independently care for their children’s needs. Frequently, this reduced power resulted in caregivers’ beliefs that they were unable to provide necessary care for their children:

The type of children’s food depends upon parents and their ability to provide such. Some men don’t care that much. It is the women who do the work, especially we mothers of [children with sickle cell disease]. We struggle to find out how you can take care of our children. We struggle to find their cures, we do everything to relieve their pain. We seldom get what they need however most of the time, they won't get anything.

Most caregivers also expressed limited power over their finances, which made it difficult for them to provide their children with nutritious food. This caregiver expressed frustration over her ability to provide for her children:

Surely, if I had a business and… I do cry because I have no business. There are three of them and me. Today this one is sick, tomorrow may be the other one. There were four of them, one died. And their father did not care. By God, he doesn’t care.

Context

Context-level themes refer to the broader social context impacting caregivers’ lives, decision-making and adherence to the intervention. Caregivers noted various contextual factors that affected their child’s adherence to the RUTF, ranging from culture, religion and finances to family systems and child preferences (table 3).

Table 3. Context-level themes supported with quotes from caregivers in focus group discussions.

Theme	Quotes
Culture	‘A child of mine… often stood at my door to have some [RUTF]. He was wondering how could all of it be to a single person. He asked for its price to buy, but the owner was not willing to sell it off as it happened in one house. The other day, I found a query on the issue of selling and sharing. They want to force him to share with them. Therefore, we as parents have to ensure that it keeps safe and secure. That is why I am hiding it’. ‘They eat a lot. But their siblings will surround them and say, “For God’s sake, we want the empty packet”. Because they get tired of it, plenty will be left in the packet, and they will take it and lick everything’. ‘If the children were given the [RUTF], they will say, “For God’s sake, should we give so-and-so? The neighbours children and children at school said that they like it. For God’s sake, Umma, should we give her?” Then I will say, “When you open and start to eat, give them a bit in their hands to eat; they are fighting”.’ ‘Well, I can say it was a tradition or culture. I can also say that it is based on solitude that a child gives to his brothers. If we restrained them and insisted that he must eat alone, others might feel discriminated against. That is my understanding’.
Religion	‘I think it is a religious injection, as it was said that a portion of two people is enough for three people’. ‘…as religion does not oblige you to give what is not sufficient to you’.
Finances	‘The way to wanted us to do is not easy to implement due to economic constraints’. ‘…We are very grateful for your effort to empower us. We are grateful… For you to have a child with sickle cell illness, that disease doesn't mind you have money or you don't as at any time it can rise and you must go to the hospital, you have to find the money for the illness from wherever you can I swear…’ ‘The [RUTF] is a favourite for children, they like it very well. That’s why when they see that it is going to be eaten, they get eager to have it. That’s why they come around and wait, so that they can get no matter how little to lick. They like it very much. It’s really desired by children, because of its peculiar taste. They even use their money to buy it, so they can’t afford to miss having it for free’. ‘When he stopped getting [RUTF], he use tell me that I should be buying it for him. I said, truly, I cannot afford to buy it for you to eat every day. Therefore, I grinded some peanuts and started using it to make some pap for him. Whenever he is going to school, I will pour it for him. If he comes back in the evening, he will also eat. Well, but despite that, the boy himself did not feel strong… The peanut pap was not good enough to him like the [RUTF]’.
Family systems	‘The truth is I am the one who looks upon the children as the father used to take bath early in the morning and left for the market. I am the one supervising them to ensure they eat food accordingly, ensuring they had their breakfast and move to school, when they came back, they will eat again and move to Islamic school, also at noon, when they resumed back, if there exist any food remnants, they will also take it, if there is any awara (tofu) too they will eat, and then in the night, they will eat again and move to the bed’. ‘My co-wife gives birth to children free of sickle cell disease. That’s the only reason why everything has changed for me now’. ‘As for me, our house later became a children’s house. There are grandchildren left behind. Their mother died. If I want to bring it in, I use the outer door. Everyone is talking, “I was given [RUTF]”. It really caused others to be jealous of me’.
Child preferences	‘On the contrary, she really eats it plain. She will puncture it and keep squeezing it out until she eats it up, but she shares with children. You will hear them come and say, “Aisha, for God’s sake, give me a bit. Even if it is five naira worth, give me a bit”. That’s how they do it, she will give them a bit, but she eats it a lot’. ‘Initially when we were given this [RUTF] up to the time we were stopped, by God, I had to give him this [RUTF] compulsorily. Sometimes when he would drink it, he would block his nose saying that the [RUTF] is smelly but his body was good’.

RUTF, ready-to-use therapeutic food.

Culture

The culture of the caregivers’ communities profoundly affected their lives, especially when it came to meals. The sharing of food and communal meals was described as a cultural cornerstone that significantly influenced almost all caregivers’ ability to monitor their children’s with SCA intake of the RUTF (table 3). This caregiver explained how meals are served communally and shared.

…In fact as our house is a large one, many people come to eat together. There are many lads whose friends visit them and eat together. The children with their mothers eat together. They could be anywhere from six to above. On the other side, I take responsibility for a man and his wife regarding their feeding. We also provide an extra during our cooking in case of a visitor that might come unexpectedly.

Caregivers described a cultural expectation to share food, leading to the sharing of RUTF among adults and children. It was common for siblings and peers to expect a portion of the RUTF, and children would ask to share it with siblings or friends. One caregiver concluded that this cultural norm was the reason for sharing the RUTF:

The explanation she gave is quite true, it is cultural habit. It is customary that you cannot eat something while someone is watching, without giving him. So, you can see that the same also applies to the [RUTF], since it is fellow children seen around them. Truly, this cultural habit is the reason.

Caregivers mentioned that not allowing a child to share or insisting that they eat alone could lead to a negative perception of their family. If they forced their child to eat alone to avoid sharing, others would feel discriminated against (table 3).

Religion

Religion and culture were intertwined, and caregivers indicated that each contributed to sharing food. This caregiver describes how Islamic practice instructs individuals to share their possessions, including food and drink:

The religion instructs that you can share your belonging with someone on compassionate grounds. There are many verses and traditions on this. Take, for example, this soft drink given to me. When I go out, I give some of it to my sister who does not get it. This is an Islamic practice as it came to us.

Food sharing was influenced by the interpretation of their religious text (table 3). However, a caregiver noted there are exceptions if sharing would be harmful to one’s health.

Finances

Finances were often discussed as a barrier to buying nutritious food. Many caregivers had financial barriers to purchasing the recommended foods to prevent malnutrition (table 3). One caregiver highlighted:

The food that you buy for them to gain weight. By God, if you only have a little capital, this will get you bankrupt. That’s just it!

Finances also influenced caregiver perceptions of the RUTF. The free provision of the RUTF was highly appreciated (table 3). Some children even tried to buy RUTF. When the clinical trial was complete, caregivers often desired to continue providing it for their children, but this was almost always cost-prohibitive.

Family system

The family system was described as patriarchal, reducing the autonomy of many caregivers. The level of the father’s involvement could either facilitate adherence or serve as a barrier. Some fathers were very disconnected from their children’s health needs, placing the burden of care on the female caregivers, who often had limited access to independent income (table 3). Additionally, caregivers described living in polygamous households, where their status within the family was often lower than other wives due to having a child with SCA. The presence of RUTF sometimes caused tension in the family dynamic, with others exhibiting jealousy over the caregiver obtaining RUTF.

However, fathers’ authority prevented sharing of the RUTF with household visitors, and when involved in their children’s care, resulted in children eating more RUTF:

The father also usually during dinner time he gives them because sometimes they reject it because it surfeited them. I left him with them (to feed them) because they responded more to him.

Child preferences

Children had varying preferences for RUTF. Some liked the taste and ate it willingly, while others did not. Caregivers adjusted to follow the intervention as prescribed, finding it worthwhile due to positive weight changes (table 3).

Strategies

To address person-level and contextual barriers affecting their children’s consumption of RUTF, prevention of sharing among household members and feeding practices, caregivers adopted various strategies to optimise adherence to the intervention, including modifying preparation, storage, meal timing and mealtime participants.

Preparation modifications

Caregivers were instructed to provide RUTF to their children in addition to feeding them nutrient-dense foods. When children did not like the taste of the RUTF, the caregivers found ways to make it more palatable. The most common method was to prepare the RUTF as a ‘pap’ or ‘gruel’ or spread it on bread. The modifications helped the children consume the recommended amount (see table 4).

While modifications to the RUTF were common among all households, modifications to household food preparation varied. A notable difference was the preparation of different amounts of food. Some caregivers reported decreased household food preparation, leading to monetary savings. In contrast, other caregivers saw no change or even increased food preparation.

Caregivers who noted their children ate less of the household food reduced the amount of food that needed to be cooked daily, as this caregiver stated:

There’s an improvement as the child ate, he is no longer required to eat anything else. All of us here appreciated it very well. We solicit to Almighty Allah to reward you and all stakeholders abundantly.

Conversely, other caregivers reported that they did not reduce household food preparation or budgets, and costs remained. These caregivers noted their children continued to eat regular food, and some even ate more. As one caregiver observed:

Actually, she never reduced her food consumption, but rather increased it. Now we add to the amount of food we measure for the day because she really eats a lot. Even though she has stopped taking the [RUTF], she is eating food adequately.

Storage modifications

Caregivers shared storage modification strategies to prevent sharing the RUTF with other family and community members (table 4). The most common strategy was to store the RUTF in a private space within their homes. However, some women used more elaborate methods, such as storing it on the roof, inside a head covering or with a local shopkeeper (table 4).

Meal timing

Caregivers adjusted the timing of meals and RUTF consumption to ensure that the children had a good appetite for the RUTF. To prevent sharing, some caregivers gave children their RUTF when others were not around (table 4).

Mealtime participants

Caregivers adjusted their routines to minimise mealtime participants, limiting sharing and preventing negative reactions from other children. Some had their child eat the RUTF when no one else was present (table 4).

Maintenance

Caregivers provided feedback on the study and shared their plans to maintain their child’s nutritional status. As caregivers observed positive changes in their children during the intervention, they stressed the importance of maintaining these improvements. This caregiver describes how the improvement of symptoms over time is a motivating factor to continue to feed her child nutrient-dense food:

We are using all of your advice very much although we have stopped using the [RUTF] we are trying a lot to ensure that they maintain this status without [declining] back because indeed we have recorded much progress, all of their activities have increased especially regards to school attending and reducing of routine sickness and frequent attending to hospitals we too were relieved from all such therefore we need to maintain this status.

Many caregivers emphasised the importance of involving fathers for improved adherence to the intervention and long-term maintenance. It was suggested that by including fathers, they would gain a better understanding of SCA, malnutrition and how to support their children, leading to better results:

…there is one appeal I want to make, like how you can see mothers profusely used to visit hospitals, please we will like you to broadcast the caring process over the media to send the messages to their fathers. This will lead to giving the fathers much awareness of what is going on with their children and would yield to produce more positive results and adequate caring and support for the children. Therefore, both we and the fathers can provide them with what they need respectively. So, that is my concern and please try to broadcast the information adequately.

Many caregivers found peer support and brainstorming during focus groups particularly useful in identifying cost-effective ways to prepare nutritious meals. Caregivers appreciated the focus groups as a form of peer support. The discussion facilitated brainstorming ideas for cost-efficient ways to prevent malnutrition. Caregivers discussed using available foods to provide nutrients similar to the RUTF and seasonal eating to affordably feed children nutrient-dense foods. As a result of the peer support from the focus group, this caregiver better understands what she needs to do to avoid regression:

We never found a substitute for the [RUTF], only that I know she is consuming food properly higher than the previous time. But since we had this now, we will look for something as a replacement to avoid [decline].

Discussion

The optimal treatment strategy for children over 5 years of age with severe acute malnutrition is unknown. A unique challenge for treating malnutrition in older children compared with younger children is that older children have some autonomy in food sharing. Our mixed-methods analysis offers novel insights into the factors influencing adherence to RUTF in children with SCA and severe acute malnutrition in predominantly Muslim northern Nigeria. The study highlights person-level and contextual factors and strategies caregivers employed to optimise adherence and maintain their child’s nutritional status. Our findings provide a comprehensive understanding of the socio-cultural and economic dynamics affecting adherence to RUTF, which can inform the design of future interventions.

Person-level factors, including beliefs about nutrition, outcome expectancies and self-efficacy, emerged as key determinants of adherence to the RUTF. Initially, many caregivers underestimated the severity of malnutrition or the potential benefits of RUTF. However, as they observed improvements in their children’s health, their beliefs shifted, increasing their motivation to adhere to the intervention. Such shifts align with health behaviour change theories, emphasising how evolving beliefs and perceived benefits drive behaviour change.²³,²⁵ Intensive education on malnutrition and the benefits of treatment could improve adherence, as studies in Ethiopia showed that knowledge and beliefs about the benefits of RUTF led to higher adherence and motivation among adults who were HIV-positive.^{26 27}

In our focus groups, a recurring theme was low self-efficacy, influenced by the limited control female caregivers had over household resources and decision-making, which is common in patriarchal systems.²⁸ The patriarchal household structure affected the caregiver’s ability to provide nutritious food. Empowering women through increased financial independence and involving fathers more directly in the treatment process could enhance adherence, as other studies highlight the positive effects of paternal involvement in complementary feeding practices in Nigeria.^{29 30}

Contextual factors such as culture, religion, finances, family systems and child preferences also influenced adherence to the RUTF. Cultural norms of communal eating and food sharing were reinforced by religious practices, making it difficult for the RUTF to be consumed exclusively by the child.³¹ Similarly, in a study in Malawi involving HIV-positive adults, social norms regarding food sharing led to reduced adherence to nutritional supplements.³² In contrast, a study in Burkina Faso, where therapeutic food was perceived as medicine rather than food, showed less sharing of the therapeutic food.²⁷ In our study, caregivers were informed that the RUTF was part of the child’s treatment. However, RUTF may not have been consistently viewed as medicinal. Caregivers’ perceptions, influenced by the messaging of the trial, can affect how they share the RUTF. Caregivers demonstrated resilience and resourcefulness by adopting strategies to overcome person-level and contextual barriers, such as modifying how RUTF was prepared, adjusting meal timing and controlling mealtime participants. These strategies echo findings from studies on coping mechanisms among caregivers of children with SCA, where resilience played a key role.³³ Peer support was another valuable resource, with mothers noting the importance of community support and greater involvement of fathers. Peer support has been shown to improve treatment outcomes, as seen in a study in India, where mothers receiving peer support had better outcomes for their malnourished children.³⁴

Households exhibited different responses in food preparation and consumption when incorporating RUTF into their child’s diet. Caregivers were advised to provide the RUTF in addition to their child’s regular diet, for an overall increase in daily calories. However, the focus group discussions revealed that some households did not change their food preparation practices or even increased their food preparation and, subsequently, the amount of food the participant consumed. Conversely, other households reduced their food preparation and grocery expenses. In some cases, families decreased the amount of food provided. While the households benefited financially from these savings, a reduction in food was an unintended consequence of the study.

Our study has several strengths. To our knowledge, this study was the first to evaluate the barriers and facilitators for adherence to nutrition interventions in children with SCA and severe acute malnutrition. Our mixed-methods design of including qualitative focus group discussions and quantitative measures allows for deeper insights into the motivations and barriers affecting adherence.³⁵ Conducting seven focus groups allowed us to reach saturation, which strengthens the reliability of our findings.^{17 36} Achieving saturation indicates that we gathered enough information to draw meaningful conclusions. However, the study also has several limitations. The reliance on self-reported data from focus groups may introduce bias, as participants could over- or under-report their behaviours and beliefs or be influenced by others in the group.^{37 38} The caregivers were mostly women; however, we identified the importance of including the perspective of the father in the future. We did not systematically collect demographic information on focus group participants, limiting our ability to fully characterise the caregiver population. Third, children were not interviewed directly, and their perspectives could have provided additional insights into adherence behaviours. Despite these limitations, the study offers important and novel insights into real-world barriers and facilitators to nutritional intervention adherence in a high-risk population, and it provides a foundation for more targeted, family-centred programming in future work. This future work should include developing and testing counselling checklists that can be adapted for other populations and studies to increase the reach of messaging surrounding RUTF and nutrition.

Conclusion

This study sheds light on the multifaceted factors affecting adherence to RUTF among caregivers of children with SCA and severe acute malnutrition in a low-income setting, offering novel insights required to inform the design of nutritional programmes to increase adherence to RUTF-based interventions. The interplay of individual beliefs, social-cultural contexts and strategic modifications determined adherence to RUTF. To our knowledge, we provide the first comprehensive understanding of how sociocultural factors, including poverty, influence the treatment of severe acute malnutrition. Some of the barriers identified, such as communal eating norms and religious influences, may be specific to the context. However, many challenges, including food insecurity, caregiver burden and stigma, are likely relevant in other low-income settings as well.³⁹,⁴¹ These findings could help guide nutritional programming in countries facing high rates of malnutrition and SCA. Recognising the broader applicability of these findings, we highlight the necessity to develop and implement nutritional programmes that go beyond providing nutritional intervention, but also a support system that recognises the barriers to improved adherence and nutritional outcomes.

Data availability statement

Data supporting the findings of this study are included in the article or uploaded as supplementary information. Additional data are available from the corresponding author upon reasonable request.