Desk review

Information sources.

The primary document search was conducted from Dec 2020-May 2022 using a non-systematic approach for review. Search terms were based on our inclusion criteria, such as “feeding difficulties,” “nutrition” or “feeding” and “disability,” “small and sick newborn feeding,” “cerebral palsy” and “feeding” or “nutrition.” The study team used these terms to search for relevant peer reviewed and non-peer reviewed studies and other articles and programmatic resources. Titles, abstracts, and summaries of all identified resources were screened by the review team, and only relevant titles were included for a full document review. The following sources were searched by the study team using the above search terms:

• Google Scholar
• Emergency Nutrition Network database (en-net.org)
• Better Care Network resources.

We also requested resources from working groups focused on early childhood development, health, and nutrition by sending an email inviting group members to share resources directly with the study team, and all resources shared were reviewed by the study team. The working groups included—

• Early Childhood Development task force for Global Partnership on Children with Disabilities (GPcwd)
• Two CORE Group sub-groups (nutrition and disability inclusive health).

Following this initial search, an iterative process was used to search for additional topics raised in interviews that were not captured in the initial document review, for example specifically reviewing literature on cleft lip/palate in Google Scholar. In addition, documents shared by key informants were also reviewed. Of 187 potential resources identified, 127 (67.9 percent) met inclusion criteria (see Fig 1).

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Fig 1. Eligible resource flowchart.

https://doi.org/10.1371/journal.pgph.0001130.g001

Resources focused primarily on LMICs and publication dates ranged from 2003–2022 with 76 percent of resources published since 2015. The majority of eligible resources were research articles or published books (n = 84, 66.1 percent). Other resources included non-peer reviewed reports or program description documents (n = 11, 8.7 percent) and program resources, such as training materials (n = 20, 15.7 percent). Twenty-two percent (n = 28) of resources were related to programs or specific interventions.

Key informant interviews

A purposive sampling approach was used for key informant interviews (KIIs). We developed a list of diverse experts in the areas of nutrition, feeding difficulties, and disability. Additional key informants were identified in the desk review or via snowball sampling. Using a semi-structured interview guide, interviews were conducted remotely and were either individual interviews or interviews with a group from the same organization. Interviews were recorded and the study team took notes. Names have been withheld to protect privacy.

Participant characteristics.

The research team invited 57 key informants to be interviewed and completed interviews with 42 (74 percent response rate). Descriptive statistics of the key informants are summarized in Table 1.

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Table 1. Descriptive characteristics of key informants.

https://doi.org/10.1371/journal.pgph.0001130.t001

Analysis

Reading and interview notes were organized using two structured matrices based on challenges and opportunities in these areas: (1) the prevalence of feeding difficulties; (2) identification of children with feeding difficulties; and (3) support to manage feeding difficulties. The universal progressive model of care framework for services outlined in the Nurturing Care Framework [15] was used to organize our findings from universal services for all children up to indicated services for children requiring specialized care with referral processes to move across levels, which aligns with a twin-track approach for ensuring equity for persons with disabilities (Fig 2). Alongside the universal progressive model of care for service provision, we specifically considered the enabling environment in communities and families for accessing and benefiting from services. Detailed notes from the document review were organized in one matrix, and key themes that emerged from the KIIs were organized into a second matrix. We pulled out the main themes from each matrix, looked for areas of commonality, and used the universal progressive model of care as a framework to organize our findings from the two matrices.

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Fig 2. Application of the universal progressive model.

https://doi.org/10.1371/journal.pgph.0001130.g002

Ethics

The study was submitted to John Snow, Inc. (JSI) Institutional Review Board and determined to be exempt from review. All key informants provided verbal consent for participation in the study.

Identification of feeding difficulties and inclusion in universal services

Identifying a feeding difficulty is the first step in providing adequate care. A number of tools for identifying feeding difficulties in children zero–five years are available, either aimed at health workers or caregivers (Table 2). The tools in Table 2 either address the identification of feeding difficulties alone or the bigger nexus of identifying feeding difficulties among children with disabilities (sometimes within more indicated support services for children with disabilities and their families and sometimes not). For example, the Eating and Drinking Ability Classification System (EDACS) was identified as one valid and reliable system for use in clinical and research contexts for children with cerebral palsy [17].

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Table 2. Tools for identifying and managing feeding difficulties.

https://doi.org/10.1371/journal.pgph.0001130.t002

Although resources exist, our review found that they are not standardized or universally used. Furthermore health workers often lack training to identify and support feeding difficulties in all children, including children with disabilities [16], and funding for capacity strengthening in this area is limited (Interview with a dietitian; Interview with a health worker; Interview with a researcher; Interview with a pediatrician). A review of child development assessment tools found variations in what domains of development are assessed; how tools are adapted, tested, and validated across contexts; and the need for valid tools to identify at-risk children in LMICs [40]. Additionally, many existing tools are not designed to identify disability or provide linked support for families. A report on neurodisability in Africa found an “obvious need to make available simple, practical neurodevelopmental monitoring or surveillance tools that can be integrated with nutritional assessments to benefit children with neurodevelopmental delays or disabilities and nutritional disorders” [41].

Respondents said that health workers accept malnutrition as the norm for children with disabilities or miss malnutrition or feeding issues because they are “hidden” or attributed to the disability (Interview with a pediatrician; Interview with a medical student; Interview with an NGO staff member). One added, “It is a self-fulfilling prophecy: health workers don’t treat the child with a disability because they say the child is just going to die. And of course they die because their malnutrition went unaddressed.” (Interview with a disability researcher). The combination of challenges in identifying feeding difficulties, limited understanding of the link between disabilities and feeding, and weak or nonexistent referral pathways or specialized services—especially outside major urban areas—puts children with feeding difficulties at a heightened risk of malnutrition (Interview with a speech and language therapist [SLT]; Interview with a physiotherapist; Interview with NGO staff).

Children with disabilities are often not included in universal nutrition services and programs even in countries with large nutrition or early childhood development (ECD) programs, especially in LMICs, due to lack of support for service providers on the needs of children with disabilities and stigma ([40]; Interview with pediatricians; Interview with a researcher). One review looked at 100 clinical trials of ECD interventions, and found that 50 percent of the trials excluded children with disabilities [40]. Food security and nutrition programs are often not designed in accessible ways and do not reach children with disabilities because of cultural stigma, physical barriers, and devaluation of their lives [42, 43]. This is further complicated due to donors prioritizing projects that anticipate seeing growth improvements in children, which cannot be predicted easily or is not the right metric for children with disabilities (Interview with a SLT). Additionally, a number of our respondents mentioned that even when children with disabilities are included in programming, data collection is usually not disaggregated to look at how outcomes might differ for them. A review of 71 national and international guidelines on malnutrition found that while most mention disability, only three had specific sections providing guidance on disability [44].

This review revealed challenges related to knowledge, attitudes, and practices of health workers toward children with disabilities, in general, and to addressing feeding difficulties more specifically. Health workers are expected to provide counseling to correct uncomplicated breastfeeding and complementary feeding difficulties but are not trained to identify when these children or their caregivers need additional support (Interview with a SLT) [26, 27, 45]. There is also limited knowledge on feeding practices for small and sick newborns, who are at greater risk for feeding difficulties and malnutrition [46]; limited skills and time for health workers to provide counseling that allows for “trial and error” of different interventions [47]; and limited use of existing resources, such as guidelines for managing challenges related to cleft lip/palate [48]. In addition, primary health care is often overstretched and underfunded, which affects the quality of support services for all children. One respondent shared, “You’ll be lucky to get quality care for an acute health problem. If you’re lucky you get one counseling session. But these contacts are insufficient.” (Interview with pediatrician). In one survey of nutrition programs that addressed children and youth with disabilities in LMICs, common challenges include a lack of trained professionals, lack of funding for disability inclusion, cultural stigma about children with disabilities, and difficulty identifying children with disabilities [42].

Targeted services for managing feeding difficulties

After feeding difficulties are identified, caregivers need targeted services to manage them, requiring a well-trained workforce with the resources and tools to provide services and support. According to the Academy of Nutrition and Dietetics, there are no specific evidence-based practice protocols to guide nutritional care for intellectual and developmental disabilities and children and youth with special health care needs [49]. This review found tools that support health workers in providing services to address feeding difficulties (see Table 2). Some of these tools have been evaluated and have shown positive results associated with their use, though often only in small-scale, observational studies. For example, observational studies have shown a decrease in feeding difficulties [21], decreased anemia and wasting [23], increased early breastfeeding and exclusive breastfeeding in neonatal care units [27], as well as family benefits such as improvements in mealtime cooperation and caregiver stress [29]. While these are positive outcomes, a number of these evaluations did not find improvements in child growth. Additionally, not all tools have yet been evaluated, and additional evaluations would provide useful information about how to adapt, scale, and use these and other tools in various contexts.

If a child has a known disability, health workers often attribute that child’s poor feeding and growth to the disability and do not provide the support that caregivers and children need to manage feeding difficulties, either because they do not know how or do not have sufficient resources [50] (Interview with a developmental pediatrician). One respondent added that health workers frequently do not recognize or address sensory-related feeding problems, such as selective eating or oral hypersensitivity (Interview with a SLT). A review found that better evidence is needed on identifying and managing children with disabilities in malnutrition programs [44], which was supported by respondents (see Box 1). Another report found that “the nutrition sector needs to provide program staff with better guidance and training on how to manage children with neurodisabilities. Further research is needed to understand the needs of nutrition sector staff and develop appropriate training” [34].

Indicated services for nutritional care of children with disabilities

Availability and access to services that are specifically related to feeding difficulties and often associated disabilities are limited. For example, one respondent mentioned a lack of social services or safety net programs to support families (Interview with a pediatrician). Rehabilitation services are either not available or are of poor quality (Interview with a physiotherapist); are often disconnected from the health system (Interview with a SLT); and do not have a specialized workforce to support children with disabilities, including speech and language therapists and occupational therapists who have experience in managing feeding difficulties (Interview with medical doctors; Interview with a SLT; Interview with NGO staff). Where there is a workforce, they often work in the private sector because there is no funding to employ them in the public sector (Interviews with SLTs), or they may work in major urban areas but not reach districts or communities farther away (Interview with a physiotherapist; Interview with a psychologist). Travel costs often make these services prohibitive, and referral systems are weak (Interview with a physiotherapist; Interview with a physiotherapist). One study in Ghana found a need for closer links between nutrition and services for persons with disabilities because there are too few referrals from services for persons with disabilities to feeding programs, or vice versa [33]. More broadly, health services in many countries are fragile, poorly coordinated and overstrained, leaving concerns about whether health care workers are available and capable of delivering these services [40].

Support groups for caregivers of children with disabilities are another resource in various settings for providing indicated services. For example, Ubuntu Hub houses three caregiver support group packages, which are listed in Table 2 [53]. These packages have been adapted for use in countries including South Africa, Bangladesh, Ghana, Brazil, and others [30–33]. An evaluation in Ghana found that in addition to the social benefits of these groups, caregivers who participated reflected on positive changes related to positioning of their children, better feeding practices, and better communication with their children, but they did not see improved growth [33, 34]. They add that the World Health Organization (WHO) recognizes the importance of support networks for the care of children with disabilities, but few studies have evaluated different types of networks and how and why they work to improve caregiver and child outcomes, especially in LMICs. The authors suggest strengthening the model by using caregivers as facilitators or co‐facilitators in the training and note that this approach was taking place in Uganda for children with neurodevelopmental conditions, and in Brazil with children with Zika [33]. A small study of this methodology in Brazil found that using paid expert mothers as facilitators was a feasible approach for peer learning and was acceptable to participants and facilitator therapists. They were seen as important to group sharing and learning and provided support and encouragement [38].

Several respondents emphasized the need for government commitment to provide, scale up, and sustain disability services, which are instead often provided by civil society or donor organizations (Interview with a physiotherapist; Interview with a SLT; Interview with a disability expert). Examples of a promising practice for strengthening government systems includes building a pipeline of speech and language therapists through a local university training program in Ghana, and working with government to overcome barriers to integration of this new workforce into routine services (Interview with a SLT); integration of follow-up care for small and sick newborns including specialized feeding and developmental support in Rwanda [47] (Interview with a nurse); and working with community health workers to help facilitate identification of children with disabilities and provide initial support services (Interviews with a pediatrician, occupational therapist, physiotherapist, and psychologist).

Enabling environment in communities and families

Families of children with feeding difficulties face challenges providing the care their children need, including coping with high-care demands, accessing guidance and support from services at all levels, obtaining appropriate foods, and combating stigma. Caregivers of children with feeding difficulties need guidance on what food to give their children and how to prepare it (e.g., smaller snacks more frequently, rather than three meals per day or modified textures) and support to provide responsive feeding (Interviews with a SLT, nurse, and researcher).

Difficulties swallowing and chewing or sensory challenges that make certain textures hard to eat may inhibit children with feeding difficulties from eating typical table foods. In many settings, food that is recommended for children with feeding difficulties is unavailable or, if available, is more expensive or requires adaptations such as modifying textures or utensils (Interview with a SLT). One health worker in Zimbabwe stressed the need to prioritize locally available, nutritious foods, and to teach caregivers how to prepare them for children with feeding difficulties (Interview with a pediatrician). Numerous respondents mentioned a lack of assistive products, such as supportive seating to improve posture or blenders to modify food and drink textures (Interviews with a pediatrician, a registered dietitian, and director of an Organization of Persons with Disabilities [OPD]). Even when there are ideas for local solutions, such as adaptive equipment, there is not enough funding to develop and test them (Interview with a registered dietitian) or to scale them up (Interview with a researcher).

Given societal barriers and discrimination on the basis of disability, having a child with one or more feeding difficulties that also has a disability causes financial strain on families; caregivers are often unable to earn income as their child’s needs are constant and unsupported (Interview with a medical doctor; Interview with a director of an OPD). One study found that feeding children with cerebral palsy can take caregivers up to seven hours a day, which can cause high stress and contribute to less responsive, or abusive, feeding practices [29]. Support services are often inaccessible due to financial barriers, insufficient supply of services, lack of expertise, lack of time, and competing priorities (Interviews with a nurse, pediatrician, and NGO staff). One Ugandan solution mentioned in interviews was day care rehabilitation centers run by caregivers of children with disabilities. The centers provided a safe place for children with disabilities to receive care and supportive services while caregivers worked. They also provide an alternative to institutionalization (Interview with a director of an OPD).

Stigma and shame associated with disability contributes to isolation of the child and family and may delay diagnosis and access to feeding and other services (Interview with an occupational therapist). Caregivers often don’t bring their child with a disability to participate in community events for fear of bringing shame upon the family [54]. One respondent said that children with disabilities are often “hidden” by their families and that data and funding for these children are needed (Interview with a registered dietitian). One study in Peru found that caregivers were not provided emotional support to prepare for having a child with a disability, and abandonment by the father was common [55]. Caregivers said that disability is considered a disease to be treated, rather than a social condition in which children and their families have rights. Providers in the study perceived children with disabilities as neglected by their caregivers and commonly held the mother responsible for delays. Some health care providers showed indifference toward children with disabilities and little willingness to care for them [56]. Some communities practice infanticide of infants with visible disabilities by discouraging caregivers from feeding them [56] (Interview with NGO staff). Another respondent said that children with disabilities are often the last to be prioritized or given food in food insecure households (Interview with a pediatrician). Stigma and lack of support or services exacerbates the vulnerability of these children to malnutrition and increases the likelihood that their feeding difficulties will go unaddressed.

Multiple respondents stated that if stigma is not addressed, no other services or interventions will adequately support children with disabilities (Interview with an SLT and dietitian). One respondent added that education and counseling services around how to address stigma—coupled with supportive social safety net solutions—are key (Interview with a nutritionist). A Ugandan disability advocate with lived experience of disability, discussing social inclusion, stated, “If this message can be spread, then tomorrow we will not have people and society that stigmatize persons with disabilities. This younger generation, these young trees, will grow knowing that having a disability is normal, that I need to support my friend with a disability. So then inclusion is not an issue. The problem is the grown up trees are hard to change; they do not accept.” (Interview with a director of an OPD).