Caregivers’ and stakeholders’ perceptions on treatment intervention of nutritional rehabilitation centre in Eastern India: a qualitative study

INTRODUCTION

Malnutrition is one of the major causes of morbidity and mortality among preschool children, especially in low and middle-income countries.¹ One of the forms of malnutrition is undernutrition, which can manifest as wasting, stunting, underweight, and micronutrient deficiencies. When there is severe wasting in an under-five child, the condition is known as severe acute malnutrition (SAM). WHO and UNICEF have defined the criteria for diagnosing SAM as the presence of weight for height <3SD, mid-upper arm circumference (MUAC) <11.5 cm, and the presence of bilateral pedal oedema in children aged 6 months to 5-year-olds. The global prevalence of SAM (severe acute malnutrition) was 2.1% in 2022.² The prevalence of SAM in India as per NFHS-3 (National Family Health Survey-3), NFHS-4, and NFHS-5, is 6.6%, 7.5%, and 7.7% respectively.³ Children under five years who are severely wasted (weight-for-height) are 6.1% in Odisha, while in Khordha it is 2.4%. The prevalence of undernutrition, i.e., stunting, wasting, and being underweight, among under-five children is 31%, 18.1%, and 29.7% respectively, in Odisha as per NFHS-5.³

The Government of India’s initiatives to tackle SAM among children focus on a multi-faceted approach that includes community-based and facility-based interventions. These include the establishment of nutrition rehabilitation centres (NRCs), integrated child development services (ICDS), National Health Mission (NHM), Community-based Management of acute malnutrition, and Poshan Abhiyan.^4-7 SAM children who develop medical complications are managed at designated facilities known as the Nutritional Rehabilitation Centre (NRC).⁸ The nation’s first NRC was established at the Government district hospital in Guna, Madhya Pradesh, in 2005 under the National Rural Health Mission (NRHM).⁹ And as of December 2023, 1,129 NRCs are operating across the country.¹⁰ NRCs are located in district hospital campuses, and Community Health Centres can be a 20 or 10-bed ward with a kitchen, a feed demonstration space, attached toilets/bathrooms, a play area, and a kitchen garden. Services provided in NRC include medical treatment, nutritional support and counselling, psychosocial support, follow-up, and referrals. SAM children admitted to NRC continue their stay for 14-21 days. Attainment of 15% weight gain of the admission weight (WHO recommendation 2009) fulfils the criteria for discharge for children 6 to 60 months from NRC. However, the criteria for discharge from inpatient care depend on the child and the mother/caregiver factors as well. Four follow-ups of the children discharged from NRC are required at an interval of 15 days.⁸

It was seen that NRCs were successful in improving the weight of admitted SAM children, but it is not sufficient for sustained weight gain in post-discharge patients.^11-13 It has also been seen that mothers/caregivers lacked proper knowledge of nutrition and feeding practices.^11-13 A systematic review of follow-up of SAM children between 6 to 24 months after treatment shows that children were still vulnerable post-discharge from NRC, and follow-up studies on the same are lacking.¹¹ Studies on the evaluation of treatment interventions are mostly cross-sectional studies. These studies have seen outcomes of NRC intervention in terms of recovery rate; however, they found that defaulter rates ranged between 6.2% to 47.2% which is alarming.^13-17

This study sought to investigate the factors influencing caregivers’ decisions to either default or accept NRC interventions for children under five. Thus, the study aimed to explore the caregivers’ and stakeholders’ perceptions of treatment intervention at NRC for SAM children in Bhubaneswar, Odisha.

METHODS

The study was conducted between January and February 2024 in the Khordha district of Odisha, Eastern India (Figure 1). This qualitative research used phenomenology where the event was SAM among under-five children, warranting treatment intervention at an NRC in Bhubaneswar, Odisha. Participants were mothers of SAM children who had stayed at NRC with their child during their child’s treatment (caregivers) and key informant individuals who were linked to providing service to SAM children who were treated at NRC (stakeholders). The Rashtriya Bal Suraksha Karyakram (RBSK) register was used to line list caregivers, and purposive sampling was done to include participants who were accessible, vocal, and willing to participate based on information given by ASHA of that village. For stakeholders’ inclusion, participants who were key informant individuals from varied backgrounds who were involved in SAM management were selected.

The study was approved by the institute ethics committee of the institute before the commencement of data collection. All participants were informed regarding the nature of the study, and written informed consent was taken. All in-depth interviews (IDIs) were conducted by the first author, who received training for the same and had no association with NRC or the participants. Face-to-face IDIs were done in a quiet and secluded place, wherever possible, and a tape recorder was used to capture the data. A pre-designed semi-structured interview guide with probes was used to explore the caregivers’ understanding of NRC, merits, demerits, difficulties, and challenges faced during their stay at NRC. Similar questions were asked to stakeholders, where we explored their understanding of NRC, merits, demerits, difficulties, and challenges faced while linking and providing service to a child at NRC. Each interview was in the native language of the participant (Odia), and the median duration of IDIs was 10 minutes 43 seconds, where the minimum duration was 4 minutes 14 seconds, and the maximum duration was 21 minutes 10 seconds. IDIs were halted once data saturation was achieved.

Data analysis involved familiarization with raw data, generating a coding framework, checking saturation, generating top codes, and identifying, reviewing, and organizing sub-themes and major themes. Taped interviews were transcribed from the native language to English by a native Odia translator. Transcript files were imported to ATLAS.ti version 7 software for in-depth thematic analysis using an inductive approach. Top-level codes were generated, further sub-themes were derived based on the similarity of top-level codes, and sub-themes were further categorized into major themes. Two authors of the research team were involved in generating top codes. Wherever there was disagreement over the categorization of themes and sub-themes, a consensus was reached after consultation with two senior authors.

RESULTS

Caregivers included five literate mothers aged 22 to 34 years. All were homemakers by profession. All mothers included had a SAM child under five years of age with complications and were admitted to an NRC within the preceding two years (Table 1). Stakeholders included individuals with varied professions who were linked in the chain of service provision for SAM children (Table 1).

Four major themes emerged concerning the perspective of caregivers on treatment intervention of NRC, i.e., “felt welcomed, accepted, and cared for”, “perceived improvement of child” (Figure 2), “Challenging and unfamiliarity,” and “sociocultural reluctance to accept intervention” (Figure 3). For each of the major themes, distinct sub-themes were derived from top codes (Table 2).

Three major themes that emerged concerning stakeholders’ perspectives of treatment interventions of NRC are “Better services and intervention” (Figure 4), “Challenging and compelling for guardians”, and “Barriers in providing essential services” (Figure 5). Distinct sub-themes were derived from top codes for each of these major themes (Table 3).

DISCUSSION

This study attempted to understand the factors influencing caregivers’ decisions to either default or accept NRC. Our findings present some of the key challenges faced by both caregivers and service providers while emphasising the importance of NRCs as a critical intervention for child malnutrition.

In contrast to our study, where there was reluctance toward government interventions, an exploratory study done in Mozambique found that mothers preferred district hospitals for malnutrition management of their children, and all mothers requested additional information on how to prevent and treat malnutrition.¹⁸ Another study in Zimbabwe showed unsupportive leadership, human resource shortages, lack of comprehensive primary health care (PHC) rehabilitation guidelines, no or delayed rehabilitation referral, lack of clear communication strategies, and users’ low demand for PHC rehabilitation were challenges.¹⁹

Similar to our findings, studies from Bangladesh depict reluctance of caregivers toward treatment regimen, their insufficient knowledge regarding proper feeding, caregivers’ inattention, and unhygienic practices were some of the principal contextual barriers.^20,21 Arafat et al study in Bangladesh sought to shape future management strategies by understanding caregivers’ and different stakeholders’ perceptions of malnutrition among infants under six months on barriers/ facilitators to future CBC (Community-based care). Of the five major themes in their result, one theme that emerged was “views and preferences on treatment: hospitals and doctors were perceived as offering the best treatment, health care workers were also important, and respondents highlighted the need for care of the caregiver/mother along with the infant,” which corroborated our findings.²²

Tandon et al study in Chhattisgarh examined the performance of NRCs and assessed the perception of mothers/carers and service providers found that 86% of beneficiaries were satisfied and 100% would recommend others as well to get help from NRCs. The themes identified were “follow-up visit and follow-up card issuing, counselling to mothers, special diet preparation, delay in receipt of incentives, and training on diet preparation, maintenance of records, and timely submission of reports” as key problems.²¹ Similar findings emerged in our study where mothers felt accepted, welcomed, cared for, and perceived improvement in their child. Findings from Karnataka showed ground-level problems like social stigma, trust issues between caregivers and care-seekers, varying needs and priorities, and overburdened frontline workers create challenges in communication and effectiveness of services, which was also the case in our study.²³ In our study, there was sociocultural reluctance to accept intervention, which was also depicted in a study done in Jharkhand, where predominant traditional and cultural practices were followed for the health care and nutrition of children. Furthermore, lack of adequate social safety nets, limited livelihood opportunities, inadequate child care support and care, and seasonal male migration leave mothers and caregivers vulnerable and limit proper child care, similar to our study.²⁴ One of our sub-themes was that mothers’ failure to comprehend the problem was similar to findings of Uttar Pradesh, where appropriate breastfeeding, complementary feeding, and food diversity were neither understood nor emphasized, and malnutrition was not recognised as a health hazard.²⁵

Our study is likely to be one of the few qualitative studies where we assessed perceptions of mothers/caregivers in NRCs, as well as service providers from varied professions who were involved in linking the child to NRC. Our study also included IDIs of mothers with defaulter (based on mothers’ recall history where they left the facility against medical advice, and in other cases, there was a lack of accommodation), SAM children, which added to our understanding of NRC service utilisation.

The study had certain limitations. Since we included only key informant stakeholders from Bhubaneswar, insights from other NRCs in the state were limited. The study involved mothers whose children had attended an NRC within the past two years, which may have introduced recall bias during some in-depth interviews. Furthermore, we were unable to include urban caregivers, as the sampling was based on the RBSK list of the RHTC within the institute’s field practice area. This limits the generalizability of caregivers’ perceptions to urban settings.

CONCLUSION

Our study highlighted that caregivers perceive NRC treatment as adequate for their child. However, they find it challenging and compelling to stay in a different environment. Our study points toward the challenges and hindrances faced by stakeholders in providing service. Hence, public health measures must be focused on caregiver education, family-inclusive approaches, and addressing sociocultural barriers to increase the acceptance and uptake of NRC services. While the current structure of facility-based management of SAM is suitable, system-level changes like flexible admission policies, infrastructural expansion involving satellite or temporary NRCs, and adopting context-specific management policies might help.

ACKNOWLEDGEMENTS

Authors would like to thank all participants who took part in the interview.

Funding: No funding sources

Conflict of interest: None declared

Ethical approval: The study was approved by the Institutional Ethics Committee of All India Institute of Medical Sciences with a wide reference number: T/IM-NF/CM&FM/23/136

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