Manifestations, responses, and consequences of mistreatment of sick newborns and young infants and their parents in health facilities in Kenya.

BACKGROUND: Despite efforts to incorporate experience of care for women and newborns in global quality standards, there are limited efforts to understand experience of care for sick newborns and young infants. This paper describes the manifestations, responses, and consequences of mistreatment of sick young infants (SYIs), drivers, and parental responses in hospital settings in Kenya.
METHODS: A qualitative formative study to inform the development of strategies for promoting family engagement and respectful care of SYI was conducted in five facilities in Kenya. Data were collected from in-depth interviews with providers and policy makers (n = 35) and parents (n = 25), focus group discussions with women and men (n = 12 groups), and ethnographic observations in each hospital (n = 64 observation sessions). Transcribed data were organized using Nvivo 12 software and analyzed thematically.
RESULTS: We identified 5 categories of mistreatment: 1) health system conditions and constraints, including a) failure to meet professional standards, b) delayed provision of care; and c) limited provider skills; 2) stigma and discrimination, due to provider perception of personal hygiene or medical condition, and patient feelings of abandonment; 3) physically inappropriate care, including providers taking blood samples and inserting intravenous lines and nasogastric tubes in a rough manner; or parents being pressured to forcefully feed infants or share unsterile feeding cups to avoid providers' anger; 4) poor parental-provider rapport, expressed as ineffective communication, verbal abuse, perceived disinterest, and non-consented care; and 5) no organized form of bereavement and posthumous care in the case of infant's death. Parental responses to mistreatment were acquiescent or non-confrontational and included feeling humiliated or accepting the situation. Assertive responses were rare but included articulating disappointment by expressing anger, and/or deciding to seek care elsewhere.
CONCLUSION: Mistreatment for SYIs is linked to poor quality of care. To address mistreatment in SYI, interventions that focus on building better communication, responding to the developmental needs of infants and emotional needs for parents, strengthen providers competencies in newborn care, as well as a supportive, enabling environments, will lead to more respectful quality care for newborns and young infants.

Introduction

In the last decade, mistreatment of women giving birth in facilities has received global attention [1-5]. Negative experiences during labor and childbirth are a deterrent to the choice of birth in health facilities [3, 6, 7], which has implications for obstetric, neonatal, and pediatric health. While there has been an exponential growth in the number of studies examining mistreatment of women during childbirth, few studies have looked at the experience of women, their partners, and their very young children when receiving or seeking care for their sick newborns or young infants. Several publications have proposed definitions and conceptual frameworks for understanding mistreatment [1, 3, 8, 9] and covered a spectrum of unpleasant to traumatic experiences, many of which are violations of women’s rights [10] and are limited to mostly maternity care. Bowser and Hill pioneered an approach to defining “disrespect and abuse” for maternity care [9], which subsequently led to a typology with seven overarching categories of mistreatment including verbal abuse, sexual abuse, physical abuse, stigma and discrimination, failure to meet professional standards, poor rapport between women and providers and health system conditions and constraints [3].

Attention to the experience of care of the newborn is more recent. The Respectful Maternity Care (RMC) Charter, published in 2011 and updated in 2019, articulates 10 fundamental rights of childbearing women and newborns. Inclusion of the newborn was essential to provide a framework for understanding the combined mother and newborn experience of care [11]. The World Health Organization (WHO) released a statement on the elimination of disrespect and abuse of women in childbirth in 2014 [7] and subsequently a framework for quality of care for maternal and newborn health (MNH) in 2016 [12]. The WHO MNH quality of care framework comprises eight domains including both the provision of care for and the experience of care by women and newborns in health facilities. Experience of care consists of effective provider communication with women and their families about the care provided, parents’ expectations and rights, care with respect and preservation of dignity, and access to social and emotional support for care received or events that may present during care. The cross-cutting areas of both experience and provision of care include availability of competent, motivated human resources and the physical resources that are prerequisites for good quality [12]. More recently, WHO published standards for improving the quality of care for small and sick newborns in health facilities, which articulates the concept of experience of care from the newborn perspective with three standards focusing on the needs and rights of newborns and their families along the care process [13].

Despite attempts to incorporate experience of care for women and newborns into global quality standards [13], there have been limited efforts to understand experience of care for sick newborns and young infants and their families seeking routine services or emergency care for critical illness [14, 15]. The complexity of conceptualizing experience of care by newborns and young infants is compounded by their inability to verbally express their needs or share their experiences [15]. Newborns and young infants express their experience of care with signs of distress or calm depending on the sensorial environment, indicating the importance of the caring environment and how this can impact on their development. Due to the long-lasting impact on the infant, there is need for providing respectful and nurturing care that responds to the needs of the infant [16]. This paper explores the experience of care of parents—mothers and fathers (or other close relatives)—who sought care for their sick young infants (SYIs; aged 0–59 days) in five large hospitals in Kenya. Drawing on perspectives of parents and providers, we describe what constitutes mistreatment of SYIs, what drives provider behaviors, parents’ immediate responses to mistreatment of SYIs, and the consequences of these experiences on parents.

Materials and methods

Design and participants

This was a qualitative formative study designed as part of larger implementation research to develop and test strategies for improving provision of nurturing care; promotion of family engagement; and communication and respect for care of newborns, infants, and very young children in resource-constrained facilities in Kenya. This paper describes the experience of care for parents and their SYIs (0–59 days) from the perspective of parents and providers.

Study sites

The study was conducted in five facilities in Nairobi and Bungoma counties, which are urban and rural, respectively. Both counties have neonatal mortality rates higher than the national average of 22 /1000 live births: 39/1000 in Nairobi and 33/1000 in Bungoma. Infant mortality rates in the counties are also higher than the national estimates of 39/1000 live births, with Nairobi estimating infant mortality at 60/1000 live births and Bungoma at 97/1000 live births [17]. Study facilities were selected in consultation with the county health management teams and the national Ministry of Health. In Nairobi, data were collected from three facilities: one large public maternity hospital, one large tertiary public hospital, and one faith-based hospital. In Bungoma, data were collected from two public referral hospitals.

Data sources

In-depth interviews with policy makers and healthcare providers

In-depth interviews (IDIs) were conducted with health officials at the national, county, and sub-county level and with providers working in newborn and pediatric units in the selected facilities. The interviews focused on understanding the policy contexts that support or hinder provision of respectful and nurturing care, experience of care for SYIs, and interactions between SYIs’ parents and their health providers.

Joint in-depth interviews with parents

We recruited parents of SYIs receiving care in the five hospitals and invited both parents of the SYI to participate in a joint interview. Efforts were made to include parents whose infant had died to explore the specific experience of bereavement care. Interview topics included experiences of hospitalization, interactions with providers and the health system, and experience of respectful care for SYIs. In addition, we explored parents’ perceptions on partnering with providers to improve care and management of their SYI, including emotional and social support. Interviews were conducted by research assistants with training in qualitative data collection using an IDI guide. Interviews were conducted in Kiswahili or English, depending on the participants’ fluency.

Focus group discussions

In each of the two counties, we conducted separate focus group discussions (FGDs) with women and men with SYIs who were hospitalized or had been born small or sick (Table 1). All the focus group participants were purposively identified through study facilities. The FGDs focused on understanding the normative perspectives of families managing SYIs, including normalized mistreatment and provider-parent interactions, and the typical parental response in hospital settings. Each FGD was facilitated by two trained research assistants, conducted in Kiswahili, and held in locations that were convenient for participants. Sessions were audio-recorded with the consent of participants. When necessary, FGDs were paused to allow time for breastfeeding or urgent attention to SYIs. In cases of severe anxiety and emotional stress of parents who had experienced mistreatment or an infant death, efforts were made to link them with professional support within the facility.

Table 1

Summary of study activities and number of participants.

Methods	Nairobi	Bungoma	Total
IDIs with policy makers	2	1	3
IDIs with providers and managers	18	14	32
IDIs with both parents	11	12	23
IDIs with single parents	1	1	2
FGDs with mothers	5	3	8
FGDs with male partners	2	2	4
Ethnographic observations	33	31	64

Ethnographic observations

We conducted non-participatory observations of the hospital settings which helped us explore routine care processes, infrastructure, and the environment in which coordination of services and interactions between providers and parents take place. For each study facility, observations were conducted for ten consecutive days, including weekends, in various departments where SYIs are managed. We recorded information using a check list template that captured how providers plan daily schedules to provide care for infants and execute their work, and how providers interact with parents and families including during bereavement or critical moments such as when the child required emergency attention. We also tracked the process of care from registration to discharge, documenting all service points and care provided in each location. A pair of research assistants, one with a clinical background and another with ethnography skills, documented the dynamic care processes for services provided. This helped to understand the experiences of mistreatment and opportunities for the health system to provide a better partnership between providers and parents of SYIs. Details of the number of participations interviewed are presented in Table 1.

Data processing and analysis

Each day, the field team documented their daily reflections, including practical challenges such as working with facility administrators to ensure proper privacy protection for interviewees, meeting recruitment goals for male participants, or finding space for large FGDs close to the locations of the SYI. The field reflections and observational data were submitted to a centralized location for synthesis and storage. Qualitative data from the IDIs and FGDs were transcribed verbatim and Kiswahili and other local language transcripts were translated into English.

Thematic analysis, adapting existing mistreatment frameworks [3, 15], guided our deductive and inductive analytical approach to coding and interpreting textual data from the transcripts. Our deductive approach entailed classifying types of mistreatment that parents of SYIs experienced and understood or observed happening to SYIs. At the interpretive stage we used categories within Bohren et al’s typology in maternal health [3] and Sacks’ additional classifications around newborn experience [15]. This approach was complemented and preceded by an inductive approach to reviewing transcripts and listing preliminary themes arising from the data. A team of 3 researchers reviewed transcripts, field notes and observations, making initial annotations around topics arising from the data. An initial codebook of 19 themes was refined based on the process of open coding and progressive categorization of issues that emerged. Transcripts were exported into Nvivo 12 (QSR International) software with facility names redacted and coded by 3 researchers. This was followed by a process of summarizing mistreatment types experienced by SYIs and their parent’s responses to this negative experiences. This process enabled the research team to explore similarities and differences in mistreatment and responses across sites and by SYI age category (between 0–59 days). The deliberative process looking at summaries in relation to the extant literature led to themes aggregated in the deductive categories that aligned closely with existing frameworks used to describe mistreatment of women during childbirth and the subsequent responses [3, 15, 18]. We adapted these categories to the SYI population during the interpretation and presentation of our results. For example, we used responses to mistreatment described by McMahon [18] and expanded it to extrapolate their effects categorized as short-term and long-term consequences. The responses were either acquiescent measures, which are non-confrontational methods, or assertive measures, which are more confrontational methods to address mistreatment.

Ethical issues

Participants were asked sensitive questions about the treatment of SYIs in hospitalized settings. To avoid the risk of others overhearing informants’ information, interviews were conducted in comfortable private locations, with ample time for data collection to guarantee privacy and confidentiality. Researchers were trained to ensure that guidance on ethical conduct was clearly understood and implemented. The research team was trained to listen and observe intently without displaying any judgmental attitude. Study information was read to potential participants, and once they understood and accepted, participants signed the informed consent form. Informed consent forms and questionnaires for parent interviews and FGDs were translated into Kiswahili. The research protocol was approved by the Population Council’s Institutional Review Board (PC IRB 893) and AMREF Ethical Review Board ESRC P646/2019 based in Kenya.

Results

We provide details of mistreatment integrated with the drivers, immediate responses, and their effects. Reported examples of mistreatment fall into five third order categories [3] identified previously in the literature and a combined category identified as physically inappropriate care which includes inappropriate feeding practices and various forms of physical abuse. We operationalize the categories based on various manifestations and the underlying drivers of mistreatment as they were either observed or reported. Details of the categories of mistreatment are presented in Table 2.

Table 2

Categories of mistreatment experienced by newborns and reported drivers.

Third order themes	Second order themes	Illustrative manifestations of experiences and reports of first order themes
Failure to meet professional standards and Health system conditions and constraints	Abandonment & Neglect	Busy providers with too much workload to provide necessary care in a timely manner
		Failure to monitor treatment procedures on infants, e.g. infants detach the IV ‘tubes’ or they get blocked leading to treatment interruption
	Delayed provision of care	Drugs and supplies shortages in facilities delay initiation of treatment and laboratory investigations
		Provider laxity or lack capacity leading to infants having to wait for long periods to get treatment
		Lack of accountability leads to some level of carelessness, like losing files amongst important documents, or not taking all the required tests leading to delays in initiating care for the infants
		Poor facility readiness to accommodate SYIs who have been referred from other facilities; delays initiation of care
	Crowded conditions	Few cots leading to 4–5 SYIs sleeping together in one cot
		Crowded emergency rooms compounded by slow triaging, delaying services
		Insufficient incubators: infants put together detach each other’s tubes, interrupting treatment
		Sharing of beds by mothers and their newborns in postnatal ward
	Poor provider skills	Providers with limited neonatal skills give high dose of medication to infants or give wrong diagnosis
	Insufficient equipment	Use of wrong equipment due to lack of supplies and equipment, e.g. wrong size Ambu bag
	Harsh environmental conditions	Unnecessary exposure to cold as parents instructed to undress infants for weighing before their turn, exposing them to cold or infant being cleaned with cold tap water as hot water not available
	Poor hygiene practices	Providers fail to wash or sanitize in between handling infants or conduct procedures or instances where weighing scale used is soiled
	Unclear care processes	Lengthy discharge process where providers prioritize sick infants due to workload, leading to delays in discharging stable children
	Non-consented care	Religious beliefs that prohibit infants from being transfused blood or injected makes providers initiate care without consent to avoid delays or worsening of conditions
		Trainees end up performing more roles than stipulated ones without close supervision, some provide services without parental consent
		Blood samples and other tests done without parental consent
Stigma and discrimination	Discrimination due to socioeconomic status and poor personal hygiene	Mothers deemed “dirty” ordered to use separate incubators or instructed to weigh their infants last
		Providers relate well with infants with disposable diapers compared to those with toweling or other cloth nappies
	Medical discrimination	Parents with HIV-exposed infants were attended to in a segregated area with screens
Physically inappropriate practices	Use of force	Perceived hard slapping of the newborn to cry soon after delivery
	Exposure to pain	Unnecessary pricking of infants before inserting an IV line
	Rough handling	Rough insertion and removal of oxygen tubes
		Providers forcefully examining infants when they are not calm
		Rough handling of newborns leading to injuries and fractures
	Unsuitable cots for infants	Failing to secure the cots leading to infants falling to the ground
	Forceful feeding	Parents forcefully feeding infants to avoid being scolded by providers
		Some in Kangaroo Mother Care unit forcefully feed newborns to try to increase weight gain for early discharge
	Insufficient feeding	Insufficient feeding for infants as mothers with multiple children find it difficult to feed more than one child in the given feeding time
		Missed feeding opportunities as infants are accidentally skipped by providers due to workload
	Poor hygiene feeding practices	Compromised hygiene as feeding cups are shared and may not be properly cleaned in the rush to feed
Poor rapport between providers and parents and their infants	Verbal abuse Harsh language or tone	Parents do not feel able to ask questions
		Harassment especially when providers are asked questions, they respond harshly to the mothers.
	Ineffective communication	Parents not given information on cord care, danger signs, identifying pain in children or what to do when pain persists, medication they are receiving and how it would help them
		No clear communication on discharge process and on attachment of newborn to breast and general care of infant
		Inadequate information regarding sample collection and test results for their infants, progress and follow up on the next visit
	Loss of autonomy	Parents are not consulted in the care of their child and feel unable to ask questions as providers are hostile
		Inability to afford health care services or medication, leads to delayed discharge due to inability to clear bills
Bereavement and posthumous care	Lack of emotional support or counselling	No one counsels bereaved mothers. Parents not told why the infant died

Manifestations and drivers of mistreatment of sick young infants

a) Failure to meet professional standards and health system conditions and constraints

In adapting the Sacks framework, we distinguish between failure to meet professional standards by providers and the health system ability to provide adequate standards of care. The former is related to staff knowledge, attitudes, and behaviors while the latter is related to the health system constraints which then drive mistreatment. The complexity of this interaction illustrates the challenges of describing discrete categories of manifestations and what drives them. For example, both parents and providers reported examples of failure to meet professional standards during care of SYIs. Observations and parents’ reports indicated that at times, providers took many breaks contributing to long queues of patients waiting to be seen. Another example of failure to meet professional standards by providers was reports of abandonment and neglect manifested through providers’ failure to monitor treatment procedures or provide timely care because of poor organization of care, contributing to delays in care provision. These were also cited as driven by heavy workload of providers—a wider health system constraint:

“…but once in a while, because sometimes we are busy, we don’t have time to carry those babies, because you are the one preparing the milk, as well as clean them…” (IDI, Provider)

“We waited and waited until later when we were told to go down there and start receiving services from there. We went there and the queue was long then we were again referred to come back upstairs, and we are yet to see the doctor” (FGD Women)

Delayed provision of care was also attributed to a lack of supplies and equipment, inadequate personnel to manage SYIs, and lack of accountability. For example, lack of facility readiness to accommodate families referred from elsewhere without prior communication delayed preparation of admission for such SYIs, postponing initiation of their care. There were also incidences where some level of carelessness, such as losing files or samples, forgetting results submitted for laboratory investigations, or not taking all the required tests led to redoing the samples, and contributed to delays in initiation of treatment for the SYI.

Some providers also expressed having limited skills to manage SYIs, especially treating those who presented with several common symptoms such as fever, cough, diarrhea. This contributed to delays in care due to inability of providers to insert intravenous lines. In an environment with limited diagnostic services, this presented a dilemma for providers who attempted to manage conditions but may have been perceived by caregivers to lack expertise to diagnose properly:

“Once in a while you might make the wrong diagnosis not because you are not thorough but sometimes there are conditions that mimic others, you get a condition that you are suspecting based on history taken, you can suspect malaria and it wasn’t.” (IDI, Provider)

There are also instances of inaccurate drug administration:

“…at night … I found my baby being administered paracetamol 5ml and he was two weeks and some days, I even asked is the medicine too much for the baby? And she was like “ooh sorry I forgot!” …I even started doubting all the medication previously given to the baby…The whole thing just shocked me. The nurse was like “I had forgotten” so she took the medicine and reduced it to the right prescription.” (FGD, Women)

Such practices were attributed to inadequate skills on the part of providers, inexperienced providers, limited opportunities for training in neonatal care or unavailability of guidelines and treatment protocols to facilitate care.

“On availability we have a challenge because guidelines are not things that you can put under key and lock. At times, when you bring them into provider room, they are mishandled and since we have many students on attachment with us sometimes the guideline books disappear. They go with them when preparing for exams” (IDI, Policy maker)

Other health system constraints that drive mistreatment include lack of sufficient space which precipitates overcrowding. This means that many young infants shared cots or incubators, exposing them to infection and interruptions of treatment or unnecessary risk:

“…Babies are placed too close to each other in the nursery, and sometimes you find another baby has removed the other baby’s tube or another baby is sucking the other baby’s fingers, you find that it’s easy for them to infect each other with diseases.” (Joint IDI, Parents)

In other instances, appropriate equipment for SYIs was unavailable or insufficient:

“You go to a facility they have an adult’s Ambu bag for resuscitation. A newborn comes in [and] they continue with it even if the face mask is bigger than the baby … [it] could be very insensitive treatment.” (IDI, Provider)

Young infants were also subjected to harsh environmental conditions. Observational data indicated that some parents were instructed to undress the infants for weighing before their turn, exposing them to cold, or young infants were cleaned with cold tap water, as hot water was only available at limited times. Parents reported unclear processes around treatment for SYIs, and lengthy and unclear discharge procedures that at times included extortion by staff. On the other hand, busy providers stated that they felt the need to prioritize critically ill SYIs, attending to discharges last:

“I have to prioritize sick babies who need my attention. Perhaps there is a baby that requires resuscitation, so you must take your time resuscitating the baby until you stabilize it…. There are babies that need intravenous lines fixed for antibiotics, by the time you finish with them you are too exhausted, you are tired even someone who is coming to tell you “discharge my baby” …the day will end without discharging them which is not very good, …it’s not fair, it’s not economical, its expensive to retain a mother here whose baby is okay.”(IDI, Provider)

In addition, inadequate supervision and laxity among providers was also reported by men:

“…when they are doing something bad, they just check where their superiors are and when they realize that the superior cannot see …. they just misbehave knowing that their superior will not be coming there any time soon. When you go to ask them something they will tell you that you are looking down on them or that you are disturbing them, that is what is causing a lot of problems in most hospitals, not just this one” (FGD, Men).

Inadequate supervision also led to instances of non-consented care by trainee students who performed certain procedures without getting proper permission from parents. This was also reported to occur most frequently during commercial strikes or night shifts, when trainees may not be well supervised. In other situations, the influence of certain religious practices in which parents would prohibit infants from being transfused blood or receive injections influenced providers to initiate care without consent to avoid delays or worsening of conditions.

b) Stigma and discrimination.

Some providers were observed discriminating against families of low-income status because of perceived poor personal hygiene:

“There are those children who come from families that are not well off and they wear funny clothes, and they don’t have diapers … so a doctor can rush to treat the patient whose baby is smart and clean, he will soothe the baby very well and help her, but when they see a baby who is shabbily dressed and is not that clean…because life isn’t the same for everyone; you will see that he doesn’t attend to that child in the right way.” (FGD, Men)

In other cases, discrimination was based on medical conditions, with reports and observations of discrimination against HIV-exposed infants who were attended to in a segregated area that was screened by curtains. Another observation was of a child with Tuberculosis who received less than optimal care and was kept separate. The nurses let the infant cry for a while without attending to him.

c) Poor rapport between parents and providers

A common theme across various participants was ineffective provider communication. There were several accounts from parents describing how some providers use harsh language resulting in parents feeling intimidated to ask questions about their young infant’s progress.

“When you try to ask, they feel like you are interfering with her work, or you are disturbing. She might answer you rudely” (FGD Men).

“Some harass you for example if you ask him a question he responds rudely” (Parent IDI)

Other forms of poor communication were observations of minimal information provided to parents on cord care, danger signs, identifying and treating pain, and continuing medications. First-time mothers received limited information on discharge processes, breastfeeding, and general infant care. Parents stated that the ineffective communication was partly driven by their fear of providers, either due to poor provider attitudes or power dynamics where providers used harsh language or tones, leading them to avoid asking questions, seek clarification, or even properly disclosing information about the infants. Poor provider attitude led to inadequate attention to the parent, which was often expressed through negative provider body language.

“Like some nurses are not friendly, … when you are attended to at a time like this when the life of your kid appears to be in the balance you need encouragement, attention, and assurance but that has not been forthcoming. You feel like you can even tell by the body language that this person feels like l am bothering him or her. That is the only problem I have had” (IDI Parents).

Fathers reported feeling isolated when not sufficiently informed or allowed to see their infants:

“Personally, since my baby came here, I have not been allowed to see him and I have not been told what the reason is [for admission] up to now. I just know that the baby is on oxygen, he has less blood, but I don’t know more up to now. They don’t see the use of the father of the child being there and following up on what is going on, and I come from very far” (FGD, Men).

Providers confirmed that there were a few cases of providers who related poorly with patients:

“There are cases of some doctors who don’t care. They just bypass patients without looking at them. They only act after the intervention of other doctors. However, such doctors are not many, it’s one out of ten who are like that” (IDI, Provider)

In general, staff shortages and workload were cited by both parents and providers as reasons for most of the negative provider-parent interaction, perceived disinterest, or non-response to parental concerns.

d) Physically inappropriate care

Use of force was reported where providers slapped newborns hard to encourage them to cry soon after birth or examined newborns when they were not calm. Additional reported experiences were unnecessary repeated “pricking” while taking blood or inserting intravenous lines and other forms of handling such as rough insertion of nasogastric tubes.

“They just do it carelessly. They handled them in an inhumane way. Or maybe when they are taking the blood samples, you see the baby is crying so much but they do not care they just inject. They were not kind to the babies.” (Joint IDI, Parents).

There were also instances where infants were not safely secured in the cots, and one observed instance where an infant fell to the ground. Other forms of physically inappropriate care were observed with multiple examples of parents trying to “forcefully” feed their young infants for fear of being threatened and verbally abused by providers if the infant did not gain adequate weight. This was observed where parents nursing infants in the Kangaroo Mother Care (KMC) rooms forcefully fed their infants hoping the infant would gain weight and be discharged faster. Insufficient feeding was observed where mothers with twins found it hard to feed more than one child in the allocated time in the newborn units:

“Those of us who have two children, the disadvantage we have limited time to breastfeed. You find yourself struggling with one to breastfeed so that you can take the other, but the stipulated time given is not enough. You find one baby sleeping and as you struggle to wake them up you are told time is over, so you find that one child does not get milk well. So, you are asked to leave, and you are allocated the same time as someone who has only one child and we have two.” (FGD, Women)

Additionally, feeding cups used to feed sick infants were shared without proper cleaning in the rush to feed multiple infants on time and within the allocated ‘feeding times’:

“In this place, the babies sleep three or four in one bed, and there are cups that we use because they can’t breastfeed directly; so we express milk in the cups and then give them but sometimes the cups are not enough and you have to wait for a mother to finish and then you take the cup wash it and use it, and that can lead you to having a limited time to feed the baby.” (FGD, Women)

Finally, some young infants missed feeding. This was observed when mothers were not available, and nursing staff skipped feeding infants due to their workload, especially at night.

e) Bereavement and posthumous care

There were varied ways in which facilities and providers responded to bereaved parents. Although some facilities have social workers or counselors, there were minimal efforts made to provide some form of emotional support or counselling when a young infant died. In some cases, there were families and parents who were able to access psychological support from the social worker or counsellor. If providers felt that the client had psychological issues, a counselor was called or the nurses themselves provided counseling. This only happened when the provider noticed extreme distress exhibited by the parents. However, overall, there was no organized form of supportive care for parents when they lost their newborns or infants. On one occasion there was no support at all.

“So she went to check on the baby before the three hours elapsed and the nurse who was on duty that day was very harsh, first she started quarrelling her why she has gone in before time… Now the nurse knew the baby had died but didn’t know how to approach the mother and tell her. So, when she came to ask, ‘where is my baby?’ the nurse did not tell her anything, she just left her standing there. That is when another nurse came and told her “Your baby didn’t make it blah, blah, blah’, just like that. (Joint IDI Parent)

Responses to consequences of mistreatment

Responses to specific mistreatment are illustrated in Fig 1 with their corresponding examples.

Fig 1

Responses to and consequences of mistreatment (adapted from McMahon et al.).

Acquiescent responses

Acquiescent responses ranged from parents feeling humiliated, resigning to the situation by not reacting for the sake of their infant’s treatment, reluctantly accepting the situation, or deciding to seek care elsewhere in the future as illustrated below:

“How does this one look, does she eat really, will this tiny baby really grow? Some of the mothers looked at me, laughed at me, and some just kept quiet, it made me angry till I cried.” (FGD, Women)

“If I take this baby to facility X, it takes so long for the baby to be seen, no adequate supplies and we are forced to buy drugs. Next time I will not seek care at [facility X], I will choose somewhere else.” (FGD, Men)

Other examples of resigning to the experience were described when parents sought information about treatment procedures but received rude responses and became fearful. Providers reported feeling that parents were interfering with their work or disturbing them, leading to abrupt or unkind responses. Parents reported that these experiences caused emotional distress, likely to influence their care seeking patterns in the future, and lead to refusal to adhere to treatment:

“A parent reported her baby removing her tube to a provider who inserted it very roughly. The baby did not feed well. The parent felt very bad and removed the tube and started cup feeding. She didn’t bother with the tube again.” (FGD Women)

“I just let the providers do their work.” (Joint IDI Parents).

Assertive responses

Assertive responses were rarely expressed or observed. Parents either quarreled with the provider or expressed their disappointment by becoming angry.

“A lady was angry with how she and her baby were being treated … shouting along the corridor, asking them to discharge her and her baby immediately because no one was telling her why her baby was still admitted despite severally asking the doctors in the ward who kept assuring her that her baby is fine but yet she was not being discharged.” (Notes from Observers)

An observer witnessed a parent who was annoyed and scolded a provider because they pricked the infant several times to collect blood samples without informing the parent about the tests or giving the results of the samples taken. This not only led to emotional distress but also strained the provider-parent relationship. Some parents would refuse to follow instructions given by the providers or request to be discharged, sometimes against medical advice, contributing to non-adherence to treatment.

Discussion

This paper explores the experience of care for parents and their SYIs who sought care in newborn or pediatric units in five large hospitals in Kenya. Experiences of mistreatment of SYIs were identified in multiple categories from discussions held with a range of respondents: policy makers, providers, and parents. These reports were corroborated during ethnographic observations and FGDs demonstrating the need to use a range of methods to describe mistreatment, poor quality of care, and contextualize findings of such a sensitive concept.

Our findings show that mistreatment of SYIs can be classified into five out of the seven categories identified by Bohren et al. for women during labor and delivery [3–5, 19] as well as those identified by Sacks for newborns [15]. Out of the seven categories identified by Bohren et al., we did not identify any incidents of sexual abuse, in concurrence with Sacks. In addition, the data did not describe any issues regarding legal accountability identified by Sacks (34). A new category that we have merged from these data: is “Physically inappropriate care.” Although lack of feeding support has been classified previously under “poor rapport of providers” [15], our findings indicate that the drivers of inappropriate feeding practices were related to hospital policies indicating set feeding times, resulting in mothers complaining there was little time to breastfeed their SYIs especially when there were twins. This, along with limited spaces that cannot accommodate many parents, issues of poor communication by providers, and lack of enough equipment (such as sterile feeding cups) suggest that this could be a category of mistreatment on its own. In addition to trying to ensure the SYIs get the required feeds, the restrictive feeding times prevent bonding and can impact the mother-infant relationship [16].

Another aspect of physically inappropriate care encompasses physical and verbal abuse which was perceived to be directed at both the SYI and the parent. Most reports of physical abuse described providers handling the infant roughly, and parents encountered providers who verbally responded rudely and harshly to them. This contributed to feeling that there was poor rapport between parents and providers resulting in a lack of communication such that parents were unaware of what was happening to their young infant. Some fathers described not knowing anything about their sick infant and others had not had an opportunity to see their newborn for the first time because of lack of access to the neonatal unit. Some providers ‘blamed’ parents for bringing their SYI late.

Several of the classification for mistreatment are also quality of care issues and directly relate to the WHO pediatric quality of care framework–especially from the experience of care domain–and the standards of care for the small and sick newborn [13]. For example, Standard 4 outlines communication with small and sick newborns and their families is effective, with meaningful participation, and responds to their needs and preferences, and parental involvement is encouraged and supported throughout the care pathway. This standard is linked to the mistreatment category of poor provider-parent rapport. Standard 7 for small and sick newborn requires availability of competent, motivated, and empathetic staff and Standard 8 indicates that each facility has appropriate physical environment for routine care and management of complications in small and sick newborns. When analyzing the data in the context of these standards, it becomes clear that the consequences of poor quality of care can manifest as mistreatment. The data describe numerous examples of failures to meet professional standards of care. This includes parents reporting that providers did not request informed consent prior to any procedures on their infant as well as neglect and abandonment whereby nurses did not respond to urgent requests by parents. Although there is limited literature describing this in infants, the maternal health literature has described this [20, 21]. https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0229923 - pone.0229923.ref004Our data also reinforce the well-established understanding that various forms of mistreatment are a result of health system conditions and constraints [22]. A complex range of systemic failures at health system, facility, and individual levels contribute to poor quality of care [3, 19]. The health system failures include inadequate essential resources, insufficient number of skilled providers, limited equipment, supplies, and lack of bed space to manage sick infants. These drivers were common and have been reported elsewhere [23-25]. However, the impact of the environment on the development of the brain and possible long-term outcomes of poor quality of care environments is not often considered.

Poor governance of the health system has also been identified as a driver of mistreatment. At the facility level, poor managerial oversight and weak accountability measures may contribute to a poor environment for health workers, a feature which is common in many settings [21, 26]. At the individual level, limited provider knowledge, negative attitudes, and low motivation contribute to poor provision of care and neglect [25].

With regard to stigma and discrimination, Bohren et al. identified four categories: 1) ethnicity/race/religion, 2) age, 3) socio-economic status and 4) medical conditions [2]. Most parents reported that poorer, less well-dressed women and those with HIV were more often ignored or had to wait longer to be seen. However, it was not clear whether the age of parents or participant ethnicity increased the likelihood of mistreatment in our study.

The inadequate support given to parents during bereavement indicates the need for stronger structures for psycho-social support for parents, especially when their SYI has a prolonged hospital stay or their infant dies. Strengthening support structures and internal mechanisms of accountability, such as appropriate reporting and feedback systems for resolving mistreatment, will improve overall quality of care and address manifestations of mistreatment in bereavement and posthumous care [15].

By examining the effect of mistreatment on the parents of hospitalized SYIs, it was clear that parents’ reactions to experiencing their infants’ mistreatment mirror what has been documented for women during childbirth. Parents described being resigned to the circumstances or retaliated by scolding the providers. It is possible that women sometimes express agency through other types of negotiations and control, which may appear as acquiescing, but may not necessarily be the case. For example, our study shows that women felt humiliated and resigning to the situation which is an adaptive behavior that could suggest resistance strategy to mitigate providers’ disrespectful treatment to their children. This has been documented in Ghana where such a strategy help women evade public humiliation because of inadequate privacy in the hospitals which affect decision-making and care provision [27]. These measures have also been documented elsewhere as acceptance and forgiveness or retaliation against the provider [23, 28]. Additionally, our data illustrate both immediate responses, such as failure to adhere to recommended treatment procedures, and long-term effects, such as changes to future care-seeking behaviors. Documenting parents’ experiences and their responses to their infants’ mistreatment has illuminated a potential pathway of effects of mistreatment. We argue that interventions should not only address the drivers of mistreatment, but also ensure that effects of mistreatment do not have lasting implications for the young infant or parent even after discharge from the hospital.

Fig 2 also shows that the experience of mistreatment is likely to not only affect future care seeking, including for extended postnatal care, which is largely underutilized, but may also have emotional effects that could have a negative impact on the parents as they continue to care for a vulnerable infant. Although we present a linear pathway for the sake of simplicity, the relationship between drivers of mistreatment, manifestations, and the corresponding effects are complex. However, the linear pathway helps to illuminate potential areas of interventions to address not only the underlying drivers but also the consequences of mistreatment. Finally, our data demonstrate that parents often suffer the experience of mistreatment projected on their SYIs, which affects their emotional wellbeing.

Fig 2

Pathways of mistreatment and potential consequence.

Attempts to improve experience of care for SYI requires the recognition and application of a person-centered care approach together with a family-centered approach [29] to ensure SYIs receive quality age-appropriate care. This includes developing interventions that address provider-parent communication, including emotional needs of parents as well as supporting them to be engaged in the care of their infants while in hospital [16]. Moreover, encouraging newborn units to identify solutions to their localized health system challenges may contribute to a more supportive work environment for all providers [30].

Strengths and limitations

Despite challenges of data collection such as getting appointments with men and potential biases associated with observations, the use of multiple methods (observations and interviews) and documentation of in-depth information may have mitigated this effect. We only collected data in large five hospitals which may not necessarily reflect experiences in all hospitals in Kenya. However, these experiences may be applicable to secondary and tertiary institutions, which have similar characteristics. This study focused on experiences of care for SYIs and their parents in hospitals. Therefore, other types of mistreatment, including that experienced by healthy newborns, and experiences at the community level, are not included. This analysis is also limited to experiences of SYIs up to 59 days.

Conclusion

This study outlines types of mistreatment that were observed or reported for SYIs in five hospitals in Kenya and explores the responses and consequences of parents. Mistreatment for SYIs appears to be prevalent and linked to poor quality of care. To address mistreatment in this group of very young children, interventions that focus on building better communication, responding to the developmental needs of infants and emotional needs for the parents, strengthen the number of providers and their competencies in newborn care, as well as a supportive, enabling, and healthy environments, will lead to more respectful quality care for newborns and young infants.

11 Jun 2021

PONE-D-20-28509

Manifestations and drivers of mistreatment of sick newborns and young infants and their parents in health facilities in Kenya

PLOS ONE

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Reviewer #1: This paper addresses the issue of mistreatment of newborns and young infants in health facilities in Kenya. It is an important topic considering global and national efforts to expand newborn care services in low- and middle-income countries for reaching the sustainable development goal targets. The authors define categories of mistreatment and the response of parents to it and suggest approaches to address the drivers of mistreatment.

While the paper is interesting and well written, I think it can be further improved by including more information that justify this classification of mistreatment, especially in relation to related literature on quality of newborn care services and on its impact on neonatal health outcomes. In addition, the conclusions can be improved by mentioning human resources for health strategies. With modifications addressing the detailed comments below, and expanding on the use of other frameworks (quality of care, nurturing care, newborn rights), this could be an influential paper.

Detailed comments are provided below by section.

1. Abstract

1.1. While it is not common to find papers on mistreatment of newborns and young infants in health facilities, there is a body of literature on quality of newborn care services and on newborn experience of care, especially in relation with development. I would rephrase the statement on "limited efforts to understand the experience of care for sick newborns and young infants".

1.2 In the conclusions the authors should include a recommendation on strategies to strengthen human resources.

2. Introduction

2.1 Page 9, "Negative experiences during labor and childbirth are a deterrent to the use of skilled birth services"...It would better "deterrent to the choice of birth in health facilities". In principle "skilled birth services" should be respectful by definition.

2.2 Page 10, the authors should mention here, after reference 12, or in place of reference 12, the Standards for improving the quality of care for small and sick newborns in health facilities, WHO 2020, which articulate the concept of experience of care from the newborn perspective with three standards focusing on the needs and rights of newborns and their families all along the care process.

2.3 Page 10, see comment 1.1. In addition, the authors may consider adding a sentence on the fact that newborns and young infants express their experience of care with signs of distress or calm depending on the sensorial environment in which they are cared for, the importance of the caring environment and how this can impact on the development of the brain, and therefore the importance of providing respectful and nurturing care, care that responds to the needs of the infant, because of the long lasting impact on the infant, not only on parents. Please refer to the literature on infant and family-centered developmental care, kangaroo mother care and nurturing care.

3. Methods

Overall the methods looks sound. More information on coding framework would be helpful.

4. Results

4.1 I understand that the classification of mistreatment is based on previous work on mistreatment in maternal health and in the newborn in the postnatal period. However, over the past five years there has been an evolution in the concept of disrespect and mistreatment which led to an update of the Respectful Maternity Care Charter to include the newborn in 2019 and to the publication by WHO of the Standards for improving the quality of care for small and sick newborns in health facilities in 2020. In fact the categories of mistreatment correspond to poor quality of care as well. Therefore, it would interesting to see a link with those documents. Also some of the categories reflect more the quality of interaction with parents than the infant. Please note that all categories of mistreatment presented in the paper are reflected in the new newborn standards and perhaps the quality of care framework of the standard with its 8 domains represents a better way of categorizing the results, in the sense of offering a way of focusing only on infant quality of care and reducing overlaps between groups.

4.2 Page 14

There is a slight difference between failure to meet professional standards and failure to meet standards of care in the sense that the first is more related to staff knowledge, attitudes and behaviors while the second is related not only to human resources challenges but also to other health system constraints.

4.3 Page 14 line 8

Are the authors intending "or" or "and"? Please clarify if failure to meet professional standards is interpreted as a staff behavior mostly related to heavy workload or not.

It looks like many other reasons, including poor organization of care, contributed to delays in care provision.

4.5 Page 14, overcrowding example. This seems to be an example of failure to meet standards of care more than professional standards. It seems to fit better among health system constraints.

4.6 Page 15 , last paragraph. These examples seem to fit better in the previous category: failure to meet professional standards, as they are related to human resources competence.

4.6 Page 19. Please explain what is intended here for forcefully: more often than prescribed, higher quantity than prescribed, which feeding technique, how babies reacted, etc.

4.7. Page 20. The authors may consider having verbal abuse included under "Poor rapport between parents and providers" instead of having it as a separate category or consider having a category on poor communication, including verbal abuse, and all the other issues as a separate category named "Disrespect and poor interaction between providers and parents", to make the categories more pertinent to newborn and infant care.

4.8. Page 22. I would classify refuse to follow instructions and request for discharge as an assertive response, given the context of Kenya.

5. Discussion

5.1 As already mentioned the issues highlighted in the paper are quality of care issues. The authors should expand the discussion. For example, if the current classification of mistreatment is maintained, the discussion will benefit from showing how the categories of maltreatment relate to the WHO quality of care framework and the standards of care for small as sick newborn, particularly those on the experience of care.

Just as an example: category 1 relates closely to provision of care standard statements S1.2. S1.3 and S1.4; category 2 relates to standard statements S1.36, S1.40, S1.41, as well as standards 7 and 8; category 3 relates to standard statements S.1 to S.4; category 4 can be linked to standard statements S5.1, S5.2, S5.3, and S6.4; category 5 is linked to standard statements S1.8, S1.9 and 5.4; category 7 to standard statements S4.1 to S4.6 which details communication; and category 8 can be linked to standard statement S5.6 among others.

5.2 Consider adding some considerations on the concept of person centered care and parents participation in the care of their infant.

5.3 Consider adding a paragraph on the impact of the environment on the development of the brain and possible long term outcomes of poor quality of care environments.

6. Conclusions

The authors should consider strengthening the conclusions with a statement on the importance of putting in place strategies to strengthen human resources for newborn care, number and competencies, as well as working environment.

Reviewer #2: The article aimed about an interesting topic however the analysis and findings do not support to answer a construct comprising of themes that would answer your research questions given as objective. I believe that the findings under what you call as themes are just summaries of the topics that were found within the coded text. "1) failure to meet professional standards manifested as abandonment and delayed provision of care; 2) health system conditions and constraints; 3) limited provider skills; 4) stigma and discrimination due to provider perception of personal hygiene or medical condition; 5)

physical abuse: providers take blood samples and insert intravenous lines and gastric tubes in a rough

manner; 6) inappropriate feeding practices: parents forcefully feed infants to avoid providers’ anger or share

unsterile feeding cups; 7) poor parental-provider rapport expressed as ineffective communication, perceived

disinterest, and non-consented care; and 8) no organized form of bereavement and posthumous care in the case

of infant’s death". The analysis in qualitative research is more than that. I will suggest that you give your analysis a review from a qualitative researcher to identify three or a maximum of four themes. Some of the current themes for example are not themes, such as: failure to meet professional standards manifested as abandonment and delayed provision of care. This is related to access to care and touches upon the three delay model of maternal care. Without keeping the findings in the existing frameworks of access to care, mistreatment of patients in low and middle income countries the study will not have a strength and the results may not be useful for wider audience. The figures included are merely summaries of the data that has already been presented.

The research aim: "This paper describes what constitutes mistreatment of sick newborns and sick young infants (SYIs), drivers, responses, and the effects of these experiences on parents." is not focused and lacks has several items put together.

Are focused group discussions with women and men useful to understand what mistreatment they received during their care or the care of their children. I think not. Please re consider the methods.

Reviewer #3: This manuscript is well written with a clear description of the design, methods, ethical considerations, results, and conclusions. The tables are especially helpful in summarizing the results. This manuscript was emotionally difficult to read but made a compelling case regarding the need for improvements in providing medical care that is compassionate and humane for sick babies and their parents. I understand the purpose of this article was to describe a problem, but I would also like to see some suggested solutions or at least a hint that solutions will be sought. Perhaps a follow-up article will describe an action plan for seeking improvements, which will need to be comprehensive as the problems seem to be so multifaceted. Effective solutions must address the need for multidisciplinary education about technical medical skills, special needs of infants and families, compassionate attitudes, and respectful communication, as well as the obvious need for adequate staffing and equipment. A summary of the comprehensive needs required to address this issue would be welcomed in the Discussion or Conclusion sections of this manuscript. If that is thought to be beyond the scope of this manuscript, I will look forward to a follow-up manuscript to address this important topic. Thank you for bringing focus to these issues that are of international significance, as I strongly suspect these problems are not limited to 5 hospital in Kenya.

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Reviewer #1: Yes: Ornella Lincetto

Reviewer #2: No

Reviewer #3: Yes: Raylene M. Phillips, MD, MA, FAAP, FABM, IBCLC

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5 Aug 2021

Changes made to the paper.

Editors’ comments and changes made

Comment 1: Please clarify in your ethics statement whether you received ethics approval from an ethics committee in Kenya to conduct this study, and whether the hospitals where the research took place approved the study.

Response 1: This has been updated in the section of ethics.

Comment 2: We note you have included a table to which you do not refer in the text of your manuscript. Please ensure that you refer to Table 2 in your text; if accepted, production will need this reference to link the reader to the Table. Please include a copy of Table 3 which you refer to in your text on page 17.

Response 2: We recognize this was an error and has since been corrected

Comments from Reviewer 1:

Comment 1: This paper addresses the issue of mistreatment of newborns and young infants in health facilities in Kenya. It is an important topic considering global and national efforts to expand newborn care services in low- and middle-income countries for reaching the sustainable development goal targets. The authors define categories of mistreatment and the response of parents to it and suggest approaches to address the drivers of mistreatment.

While the paper is interesting and well written, I think it can be further improved by including more information that justify this classification of mistreatment, especially in relation to related literature on quality of newborn care services and on its impact on neonatal health outcomes. In addition, the conclusions can be improved by mentioning human resources for health strategies. With modifications addressing the detailed comments below and expanding on the use of other frameworks (quality of care, nurturing care, newborn rights), this could be an influential paper.

Response 1: We thank the reviewer for this comment. we have made the appropriate amends in the paper taking account of these reflections. We present a detailed account of changes in each specific comments below.

Detailed comments are provided below by section.

1. Abstract

Comment 1.1. While it is not common to find papers on mistreatment of newborns and young infants in health facilities, there is a body of literature on quality of newborn care services and on newborn experience of care, especially in relation with development. I would rephrase the statement on "limited efforts to understand the experience of care for sick newborns and young infants".

Response 1.1 The abstract has been amended with this comment in mind and now it reads:

“Despite efforts to incorporate experience of care for women and newborns in global quality standards, there have been limited efforts to understand experience of care for sick newborns and young infants (aged 0-59 days). This paper describes what constitutes mistreatment of sick young infants (SYIs), drivers, and parental responses in hospital settings in Kenya”.

Comment 1.2: In the conclusions the authors should include a recommendation on strategies to strengthen human resources.

Response 1.2: We have included potential strategies for both clients and providers. For providers we have stated that there is need to have supportive environment including emotional needs. The conclusion section of the abstract now reads:

“Conclusion: Mistreatment of newborns and SYI is common and requires strategies that address drivers and effects of mistreatment. Approaches that build better communication, address the emotional needs of parents and providers, and provide supportive, enabling, and healthy environments will lead to more respectful care of newborns and young infants”

2. Introduction

Comment 2.1 Page 9, "Negative experiences during labor and childbirth are a deterrent to the use of skilled birth services"...It would better "deterrent to the choice of birth in health facilities". In principle "skilled birth services" should be respectful by definition.

Response 2.1: This has been amended and is reflected in page 3 of the current article.

Comment 2.2 Page 10, the authors should mention here, after reference 12, or in place of reference 12, the Standards for improving the quality of care for small and sick newborns in health facilities, WHO 2020, which articulate the concept of experience of care from the newborn perspective with three standards focusing on the needs and rights of newborns and their families all along the care process.

Response 2.2: We have made additions to the stated paragraph by linking the overall standards for maternal health to the WHO published standards for improving quality of care for small and sick newborns. The part now reads:

“Attention to the experience of care of the newborn is more recent. The Respectful Maternity Care (RMC) Charter, published in 2011 and updated in 2019, articulates 10 fundamental rights of childbearing women and newborns. Inclusion of the newborn was essential to provide a framework for understanding the combined mother and newborn experience of care (11). The World Health Organization (WHO) released a statement on the elimination of disrespect and abuse of women in childbirth in 2014 (7) and subsequently a framework for quality of care for maternal and newborn health (MNH) in 2016 (12). The WHO MNH quality of care framework comprises eight domains including both the provision of care for and the experience of care by women and newborns in health facilities. Experience of care consists of effective provider communication with women and their families about the care provided, parents’ expectations and rights, care with respect and preservation of dignity, and access to social and emotional support for care received or events that may present during care. The cross-cutting areas of both experience and provision of care include availability of competent, motivated human resources and the physical resources that are prerequisites for good quality (12). More recently, WHO published standards for improving the quality of care for small and sick newborns in health facilities which articulate the concept of experience of care from the newborn perspective with three standards focusing on the needs and rights of newborns and their families all along the care process (13).”

Comment 2.3 Page 10, see comment 1.1. In addition, the authors may consider adding a sentence on the fact that newborns and young infants express their experience of care with signs of distress or calm depending on the sensorial environment in which they are cared for, the importance of the caring environment and how this can impact on the development of the brain, and therefore the importance of providing respectful and nurturing care, care that responds to the needs of the infant, because of the long lasting impact on the infant, not only on parents. Please refer to the literature on infant and family-centered developmental care, kangaroo mother care and nurturing care.

Response 2.3: We appreciate the reviewer’s comments and have made amends to the stated paragraph to reflect these thoughts. Two we have referenced one the seminal papers on nurturing care: The section now reads

“The complexity of conceptualizing experience of care by newborns and young infants is compounded by their inability to verbally express their needs or share their experiences (15). Newborns and young infants express their experience of care with signs of distress or calm depending on the sensorial environment, indicating the importance of the caring environment and how this can impact on their development. Due to the long-lasting impact on the infant, there is need for providing respectful and nurturing care that responds to the needs of the infant(16). Therefore, this paper explores the experience of care of parents—mothers and fathers (or other close relatives)—who sought care for their sick young infants (SYIs) in five large hospitals in Kenya. We describe what constitutes mistreatment of SYIs (all sick babies 0-59 days old), what drives these provider behaviors, parents’ immediate responses to mistreatment of SYIs, and the effects of these experiences on parents”

3. Methods

Comment 3.1: Overall the methods look sound. More information on coding framework would be helpful.

Response 3.1: We have made clarifications to the process of coding to include the number of themes and how we adapted the existing framework to our analytical process. Details of the changes are reflected in the last paragraph in page seven, and it reads:

“Thematic analysis, adapting existing mistreatment frameworks(3, 15), guided our analytical approach. Types of mistreatment that parents of SYIs experienced and understood or observed happening to SYIs were categorized using the typology described by Bohren et al. for maternal health (3) and expanded by Sacks to include newborns (15). A team of 3 researchers reviewed transcripts, field notes and observations, making initial annotations around topics arising from the data. An initial codebook of 19 themes and 100 sub-themes was developed and refined based on the process of open coding and progressive categorization of issues that emerged. Transcripts were exported into Nvivo 12 (QSR International) software with facility names redacted and coded by 3 researchers. This was followed by a process of summarizing mistreatment types experienced by SYIs and their parent’s responses to this negative experiences. This process enabled the research team to explore similarities and differences in mistreatment and responses across sites and by SYI age category (between 0-59 days). The deliberative process looking at summaries in relation to the extant literature led to themes aggregated in categories that aligned closely with existing frameworks used to describe mistreatment of women during childbirth and the subsequent responses (3, 15, 18). We adapted these categories to the SYI population during the interpretation and presentation of our results. For example, we used responses to mistreatment described by McMahon (18) and expanded it to extrapolate their effects categorized as short-term and long-term consequences. The responses were either acquiescent measures, which are non-confrontational methods, or assertive measures, which are more confrontational methods to try to address mistreatment.

4. Results

Comment 4.1 I understand that the classification of mistreatment is based on previous work on mistreatment in maternal health and in the newborn in the postnatal period. However, over the past five years there has been an evolution in the concept of disrespect and mistreatment which led to an update of the Respectful Maternity Care Charter to include the newborn in 2019 and to the publication by WHO of the Standards for improving the quality of care for small and sick newborns in health facilities in 2020. In fact, the categories of mistreatment correspond to poor quality of care as well. Therefore, it would be interesting to see a link with those documents. Also some of the categories reflect more the quality of interaction with parents than the infant. Please note that all categories of mistreatment presented in the paper are reflected in the new newborn standards and perhaps the quality-of-care framework of the standard with its 8 domains represents a better way of categorizing the results, in the sense of offering a way of focusing only on infant quality of care and reducing overlaps between groups.

Response 4.1: We appreciate this observation, and we recognize the value of linking our results to the existing standards. Since we adapted the framework in developing typologies, we have made this clear in the methods section. Additionally, we have clarified in the discussion section how these results fit with the WHO standards of newborn care. In view of this, we have retained the structure of the results with clarity of how we have used the framework. Wherever there are overlaps we have attempted to illustrate that using examples and comment that there are categories that overlap but the essence will be how best to address the underlying drivers to minimize the observe and experience mistreatment.

Comment 4.2 Page 14

There is a slight difference between failure to meet professional standards and failure to meet standards of care in the sense that the first is more related to staff knowledge, attitudes and behaviors while the second is related not only to human resources challenges but also to other health system constraints.

Response 4.2: This is well thought out reflections. we have made the necessary adjustments to the section to incorporate this comments. The section now reads:

a) Failure to meet professional standards and health system conditions and constraints

In adapting the Sacks framework, we distinguish between failure to meet professional standards by providers and the health system ability to provide adequate standards of care. The former is related to staff knowledge, attitudes, and behaviors while the latter is related to the health system constraints which then drive mistreatment. The complexity of this interaction illustrates the challenges of describing discrete categories of manifestations and what drives them. For example, both parents and providers reported examples of failure to meet professional standards during care of SYIs. Observations and parents’ reports indicated that at times, providers took many breaks contributing to long queues of patients waiting to be seen. Another example of failure to meet professional standards by providers was reports of abandonment and neglect manifested through providers’ failure to monitor treatment procedures or provide timely care because of poor organization of care, contributing to delays in care provision. These were also cited as driven by heavy workload of providers - a wider health system constraint:.”

Comment 4.3 Page 14 line 8

Are the authors intending "or" or "and"? Please clarify if failure to meet professional standards is interpreted as a staff behavior mostly related to heavy workload or not.

It looks like many other reasons, including poor organization of care, contributed to delays in care provision.

Response 4.3: This has been adjusted see responses to comment 4.2 above

Comment 4.5 Page 14, overcrowding example. This seems to be an example of failure to meet standards of care more than professional standards. It seems to fit better among health system constraints.

Comment 4.6 Page 15 , last paragraph. These examples seem to fit better in the previous category: failure to meet professional standards, as they are related to human resources competence.

Response 4.5 and 4.6: This section has been amended see response 4.2 above.

Comment 4.6 Page 19. Please explain what is intended here for forcefully: more often than prescribed, higher quantity than prescribed, which feeding technique, how babies reacted, etc.

Response 4.6: We observed cases of mothers trying to feed their children multiple times with a desire and a perception that this will help their children to add weight faster as part of a response to avoid scolding from providers who often abused mothers of those whose children do not add weight as expected.

Comment 4.7. Page 20. The authors may consider having verbal abuse included under "Poor rapport between parents and providers" instead of having it as a separate category or consider having a category on poor communication, including verbal abuse, and all the other issues as a separate category named "Disrespect and poor interaction between providers and parents", to make the categories more pertinent to newborn and infant care.

Response 4.7: This has been adjusted and is now described under the category of poor rapport between parents and providers.

Comment 4.8. Page 22. I would classify refuse to follow instructions and request for discharge as an assertive response, given the context of Kenya.

Response 4.8: this has been amended and has been described under assertive section.

5. Discussion

Comment 5.1 As already mentioned the issues highlighted in the paper are quality of care issues. The authors should expand the discussion. For example, if the current classification of mistreatment is maintained, the discussion will benefit from showing how the categories of maltreatment relate to the WHO quality of care framework and the standards of care for small as sick newborn, particularly those on the experience of care. Just as an example: category 1 relates closely to provision of care standard statements S1.2. S1.3 and S1.4; category 2 relates to standard statements S1.36, S1.40, S1.41, as well as standards 7 and 8; category 3 relates to standard statements S.1 to S.4; category 4 can be linked to standard statements S5.1, S5.2, S5.3, and S6.4; category 5 is linked to standard statements S1.8, S1.9 and 5.4; category 7 to standard statements S4.1 to S4.6 which details communication; and category 8 can be linked to standard statement S5.6 among others.

Response 5.1: We thank the reviewer for this observation. We recognize the how the categories we describe are closely linked to the quality-of-care issues and provision of care standards for small and sick newborn. We have used a couple of examples of the standards in the discussion and have reflected on its applicability to our results. This has been expanded in page 18 of the article in the discussion section which reads:

“Several of the classification for mistreatment are also quality of care issues and directly relate to the WHO pediatric quality of care framework – especially from the experience of care domain – and the standards of care for the small and sick newborn(13). For example, Standard 4 outlines communication with small and sick newborns and their families is effective, with meaningful participation, and responds to their needs and preferences, and parental involvement is encouraged and supported throughout the care pathway. This standard is linked to the mistreatment category of poor provider-parent rapport. Standard 7 for small and sick newborn requires availability of competent, motivated, and empathetic staff and Standard 8 indicates that each facility has appropriate physical environment for routine care and management of complications in small and sick newborns. These standards when applied to this data illustrate consequences of poor quality of care which manifest as mistreatment. Another example is when on numerous occasions, the data describe failures to meet professional standards of care. This includes parents reporting that providers did not request informed consent prior to any procedures on their infant as well as neglect and abandonment whereby nurses did not respond to urgent requests by parents. Although there is limited literature describing this in infants, the maternal health literature has described this (20, 21). Our data also reinforce the well-established understanding that various forms of mistreatment are a result of health system conditions and constraints (22). A complex range of systemic failures at health system, facility, and individual levels contribute to poor quality of care (3, 19). The health system failures include inadequate essential resources, insufficient number of skilled providers, limited equipment, supplies, and lack of bed space to manage sick infants. These drivers were common and have been reported elsewhere (23-25). However, the impact of the environment on the development of the brain and possible long-term outcomes of poor quality of care environments is not often considered”

Comment 5.2 Consider adding some considerations on the concept of person-centered care and parents participation in the care of their infant.

Response 5.2: We note this response and have inserted several suggestions on how to incorporate person entered care. For example, in in page 20 the second paragraph reads:

“Documenting parents’ experiences and their responses to their infants’ mistreatment has illuminated a potential pathway of effects of mistreatment. We argue that interventions should not only address the drivers of mistreatment, but also ensure that effects of mistreatment do not have lasting implications for the young infant or parent even after discharge from the hospital”

Another example is in page 21 which includes specific interventions that can be implemented:

“Attempts to improve experience of care for SYI requires the recognition and application of a person-centered care approach together with a family-centered approach(28) to ensure SYIs receive quality age-appropriate care. This includes developing interventions that address provider – parent communication, including emotional needs of parents as well as supporting them to be engaged in the care of their infants while in hospital (16). Moreover, encouraging newborn units to identify solutions to their localized health system challenges may contribute to a more supportive work environment for all providers(29)”

Comment 5.3 Consider adding a paragraph on the impact of the environment on the development of the brain and possible long-term outcomes of poor quality of care environments.

Response 5.3: This has been reinforced in page 19 of the article and reads: “Our data also reinforce the well-established understanding that various forms of mistreatment are a result of health system conditions and constraints (22). A complex range of systemic failures at health system, facility, and individual levels contribute to poor quality of care (3, 19). The health system failures include inadequate essential resources, insufficient number of skilled providers, limited equipment, supplies, and lack of bed space to manage sick infants. These drivers were common and have been reported elsewhere (23-25). However, the impact of the environment on the development of the brain and possible long-term outcomes of poor quality of care environments is not often considered”

6. Conclusions

The authors should consider strengthening the conclusions with a statement on the importance of putting in place strategies to strengthen human resources for newborn care, number and competencies, as well as working environment.

Response 6: We thank the reviewer for this. we have made amends to strengthen the conclusion which incorporates the need to strengthen human resources and emotional needs for parents and providers as well: it now reads: “This study outlines the types of mistreatment that were observed or reported for SYIs in five hospitals in Kenya and explores the responses and consequences on parents. Mistreatment for SYIs appears to be prevalent and linked to poor quality of care. To address mistreatment in this group of very young children, interventions that build better communication, address emotional needs for the parents, strengthen the number of providers and their competencies in newborn care, as well as a supportive, enabling, and healthy environments will lead to more respectful quality care for newborns and young infants”

Comments from Reviewer 2:

Reviewer #2: The article aimed about an interesting topic however the analysis and findings do not support to answer a construct comprising of themes that would answer your research questions given as objective. I believe that the findings under what you call as themes are just summaries of the topics that were found within the coded text. "1) failure to meet professional standards manifested as abandonment and delayed provision of care; 2) health system conditions and constraints; 3) limited provider skills; 4) stigma and discrimination due to provider perception of personal hygiene or medical condition; 5) physical abuse: providers take blood samples and insert intravenous lines and gastric tubes in a rough manner; 6) inappropriate feeding practices: parents forcefully feed infants to avoid providers’ anger or share unsterile feeding cups; 7) poor parental-provider rapport expressed as ineffective communication, perceived disinterest, and non-consented care; and 8) no organized form of bereavement and posthumous care in the case of infant’s death".

Comment 2.1 The analysis in qualitative research is more than that. I will suggest that you give your analysis a review from a qualitative researcher to identify three or a maximum of four themes. Some of the current themes for example are not themes, such as: failure to meet professional standards manifested as abandonment and delayed provision of care. This is related to access to care and touches upon the three-delay model of maternal care. Without keeping the findings in the existing frameworks of access to care, mistreatment of patients in low- and middle-income countries the study will not have a strength and the results may not be useful for wider audience. The figures included are merely summaries of the data that has already been presented.

Responses to reviewer 2

We appreciate this comment. We have amendments to the method sections to illustrate three things. First, we have provided a detailed explanation of the frameworks that we drew on that guided our interpretation of the data in the methods section. Two, we believe that the layered analysis draws from basic coding of themes to exploring connections with existing frameworks of mistreatment such as those described by Bohren et all and responses to mistreatment by McMahon et all. Three, we have demonstrated that although we don’t present all the themes in this paper, we have captured the typologies that speak to the framework we adapted for the analytical process. However, we do state the number of themes that were generated from the analysis process and presented only the relevant typology for the focus area of this paper.

We hope that with the revision the process of post hoc interpretation following inductive coding approach is amenable.

Comment 2.2: The research aim: "This paper describes what constitutes mistreatment of sick newborns and sick young infants (SYIs), drivers, responses, and the effects of these experiences on parents." is not focused and lacks has several items put together.

Response 2.2: We have revised our aim to be clearer about what the focus is. It now reads in page 4 of the main paper as follows: “Therefore, this paper explores the experience of care of parents—mothers and fathers (or other close relatives)—who sought care for their sick young infants (SYIs) in five large hospitals in Kenya. We describe what constitutes mistreatment of SYIs (all sick babies 0-59 days old), what drives these provider behaviors, parents’ immediate responses to mistreatment of SYIs, and the consequences of these experiences on parents”

This has also been reflected in the tile which reads “Manifestations, responses and consequences of mistreatment of sick newborns and young infants and their parents in health facilities in Kenya:

Comment 2.3 Are focused group discussions with women and men useful to understand what mistreatment they received during their care or the care of their children. I think not. Please re consider the methods.

Response 2.3: Thanks for this comment – we have clarified in the methods why FGDs were used – as ways of describing norms of mistreatment and parental responses in hospital setting.

Comments from reviewer 3

Reviewer #3: This manuscript is well written with a clear description of the design, methods, ethical considerations, results, and conclusions. The tables are especially helpful in summarizing the results. This manuscript was emotionally difficult to read but made a compelling case regarding the need for improvements in providing medical care that is compassionate and humane for sick babies and their parents. I understand the purpose of this article was to describe a problem, but I would also like to see some suggested solutions or at least a hint that solutions will be sought. Perhaps a follow-up article will describe an action plan for seeking improvements, which will need to be comprehensive as the problems seem to be so multifaceted. Effective solutions must address the need for multidisciplinary education about technical medical skills, special needs of infants and families, compassionate attitudes, and respectful communication, as well as the obvious need for adequate staffing and equipment. A summary of the comprehensive needs required to address this issue would be welcomed in the Discussion or Conclusion sections of this manuscript. If that is thought to be beyond the scope of this manuscript, I will look forward to a follow-up manuscript to address this important topic. Thank you for bringing focus to these issues that are of international significance, as I strongly suspect these problems are not limited to 5 hospital in Kenya.

Response to Reviewer 3: Thanks for your comments We have added in some potential solutions. However, since this part of the formative assessment to developing interventions, we would be describing the process of developing and implementing these interventions in subsequent follow up articles on what we were able to do as part of the larger study

Submitted filename: Response to Reviewers.docx

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1 Nov 2021

15 Dec 2021

Comment from Reviewer #1: : The paper is much clearer now and addresses better the complexity of this topic making the needed links with available literature. The authors may consider presenting the conclusions in the same order of thinking as the categories of mistreatment, for example starting from the need of addressing health system challenges, including availability of competent neonatal health care providers, then the issues of building better communication and responding to the developmental needs of infants and emotional needs of families, and finally creating supporting environments for care and bereavement.

Response 1: We thank the reviewer for these comments. The conclusion has been revised to reflect the suggested changes and now reads as presented below

“This study outline types of mistreatment that were observed or reported for SYIs in five hospitals in Kenya and explores the responses and consequences of parents. Mistreatment for SYIs appears to be prevalent and linked to poor quality of care. To address mistreatment in this group of very young children, interventions that focus on building better communication, responding to the developmental needs of infants and emotional needs for the parents, strengthen the number of providers and their competencies in newborn care, as well as a supportive, enabling, and healthy environments, will lead to more respectful quality care for newborns and young infants”

Comment from Reviewer #2: Abstract: Conclusions need to reflect the results of the study. Summarize them in simple words.

Response 2: This has been adjusted in line with review 1 and now reads

“Mistreatment for SYIs is linked to poor quality of care. To address mistreatment in SYI, interventions that focus on building better communication, responding to the developmental needs of infants and emotional needs for parents, strengthen providers competencies in newborn care, as well as a supportive, enabling environments, will lead to more respectful quality care for newborns and young infants”

Comment 3: Methods: I am sure this was not a cross sectional study. Please carefully write the methods section in the abstract as well as in the main methods section.

Response 3: This has been reworded in both the methods section of the study and the abstract. The corrected language in both sections removes the cross-sectional qualifier. It now reads

“This was a qualitative formative study designed as part of larger implementation research to develop and test strategies for improving provision of nurturing care; promotion of family engagement; and communication and respect for care of newborns, infants, and very young children in resource-constrained facilities in Kenya”

Comment 4-1 Findings of the study. The analysis has been improved yet there needs to be effort for this analysis to meet the quality qualitative study expectations. A clear analytic approach is missing

Response 4-1: The analytic approach – thematic analysis – is described on page 8 in the “data processing and analysis section.” We have added some language around our mixed approach (deductive and inductive) to guide the reader more carefully through our adaptation of existing frameworks and application to our data

Comment 4-2. The findings are merely description of what participants said and believed. It needs to go beyond and identify the nuances within the data and then add interpretation. Follow some quality qualitative articles on your topic.

Response 4-2. We appreciate this comment made in several rounds of review. However, we feel that the approach we have taken is analytical and integrates categories known from literature in the field and then we demonstrate manifestations using data as examples. The integrative approach we have used is deliberate to illuminate examples of typologies we present. This we hope provides evidence via the mundane details we present.

Comment 4-3. The statement “An initial codebook of 19 themes and 100 sub-themes was developed and refined based on the process of open coding and progressive” is wrong. We cannot have that many themes or subthemes in qualitative research.

Response 4-3: We have removed the sub-theme categorization as it is irrelevant for this manuscript and retained the 19 themes which represent the main topic areas that contributed to the themes presented.

Comment 4-4. Identify only a few themes by merging categories and tell a complete connected story about how your theme answer your research question. And what was your research question needs to be explicitly identified.

Response 4-4: Our analysis was led both by deductive and inductive approaches and aligned to the existing typologies. Our story is then detailed using the typologies, but we go ahead and describe how these experiences affect caregivers of children and the reactions they exhibit. Our research intent was to describe perspectives of parents and providers, what constitutes mistreatment of SYIs, what drives provider behaviors, parents’ immediate responses to mistreatment of SYIs, and the consequences of these experiences on parents

Comment 4-5. We describe what constitutes mistreatment of SYIs, what providers say drives their behaviors, parents’ immediate responses to mistreatment of SYIs, and the consequences of these experiences on parents: it is I think the parents would perceive and describe their experiences of mistreatment not you who will describe it. Therefore, your objectives need to be reset.

Response 4-5: Appreciate the comment. We have reworded the objectives, by adding the clause “Drawing on perspectives of parents and providers,…we describe….” The use of “we” is an accepted way to draw the perspectives of the researchers into the interpretation of the data and study objectives – particularly relevant and helpful in qualitative work. What is meant here is, “The study describes…” We hope that with this change, the objectives are clearer.

Comment 6. Where you are referring to table 1, I believe you mean Fig. 1.

Response 6: This has been corrected

Comment 7. Discussion will follow the amendments based upon the suggestions on revising the themes.

Response 7: We have responded to the issues on themes and how we have structured them. We believe the analytical approach resonates with literature. We therefore did not make much adjustment to the discussions except editorial changes.

We believe the changes made above are sufficient and adequately responds to the issues raised

We look froward for your final decision

Timothy Abuya, PhD

On behalf of the team

Submitted filename: Response to Reviewers.docx

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3 Jan 2022

Manifestations, responses, and consequences of mistreatment of sick newborns and young infants and their parents in health facilities in Kenya

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11 Feb 2022

PONE-D-20-28509R2

Manifestations, responses, and consequences of mistreatment of sick newborns and young infants and their parents in health facilities in Kenya

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