Our findings are separated into two broad categories. First, we report four themes from our analysis which provide insight into the paediatric primary care context prior to PACK Child implementation. These findings expand on our previous findings from consultation observations [12], that identified an institutionalised orientation to treat children’s symptoms as acute conditions, rather than as potential markers of underlying long-term health conditions. They provide insight into the wider context into which implementation of the PACK Child intervention was introduced. These four themes include: (i) organisational barriers, (ii) IMCI policy, (iii) verticalised care and (iv) symptoms of long-term problems viewed as acute conditions. Secondly, we present three themes from our analysis of the extent to which PACK Child addressed the perceived problems within the current paediatric primary care system. These are problems with: (i) expansion of paediatric primary care, (ii) teamwork and referrals and (iii) eliciting and responding to psychosocial problems. Figure 2 provides a visual representation of themes and sub-themes. The figure is not intended to represent the interaction between different contextual features and the PACK Child intervention, but to show contextual features that contributed to the institutionalised orientation to treat children’ symptoms as acute, episodic conditions, and how the introduction of PACK Child initiated a shift towards a different model of child care. To capture some of this complexity within the text here, we present the themes and sub-themes as part of a narrative rather than reporting each theme sequentially.
Figure 2: Themes and sub-themes
Perceptions of paediatric primary care
Caregivers frequently shared experiences of care which indicated how health workers were oriented to treating children’s symptoms as acute episodic conditions. Despite having attended the facility repeatedly with the same problem, some caregivers reported that health workers rarely asked about the child’s previous history to help establish a diagnosis. Where caregivers did report a diagnosis of a long-term health condition, they provided accounts of an absence of ongoing management and routine follow up.
“The third son of mine, they say he got eczema, sometimes his skin would be so bad, and he would use all those creams. They would give you when his skin is got so bad, I would go to the clinic and they would give you the aqueous cream. Then they will say the skin is fine now. But when the child goes off medicine and it is finished, then I will stop going. Along the line the same thing will come back again. So, I was thinking maybe they are supposed to be giving me the same aqueous cream all the time, because you know he has eczema you know he should be coming for the same medication every time.”(Caregiver 50, Interview, Phase 1)
This finding from the perspective of caregivers was set against that of health workers who in many facilities reported that they rarely had children attending with long-term health conditions, and these children were attending larger clinics known in Cape Town as ‘day hospitals’.
“I haven't seen a child with long-term health conditions. I think most of them go to day hospital.” (Nurse, Focus Group 2, Phase 2)
A consequence of this orientation to acute, episodic care is that it limits the ability of health workers to address other problems that may have an important bearing on the child’s health more generally, as described by one caregiver with a child with behavioural problems.
“Earlier this year [Child’s name] schooling hasn't been going very well, we have tried to help him at home but it’s not easy as he struggles to concentrate and I thought maybe he has ADHD so I came to the clinic to ask for advice but nobody could really help me or give me proper information. They gave me this number and that number and this form and that form so that wasn't really proper information about how to have my child tested for ADHD, because if he does have it, I would like to do something about it before he gets older. But then I struggled up and down for a few months here and then I decided I am just going to leave it and I put more effort into helping him at home.”(Caregiver, Interview, Phase 3)
A recurrent sub-theme, often set alongside descriptions of health workers focusing on their child’s long-term health condition symptoms as acute problems, was the notion that caregivers felt marginalised as a resource and active agent in their child’s care, repeatedly describing how they were ignored, their view dismissed, or felt blamed for their child’s health problems.
“You know this nurse, sometimes they are very rude because they ask me "Why is your child like this, why is your child underweight” and it's not my fault and my child was sick and I was not giving him food. I was only breastfeeding. They always judge my child, why is your child like this, why is your child like this, why you don't feed your child. But they said to me I must not give the child water; I must not give the child food. You see. But they are rude sometimes, sometimes they are shouting you. If you don't have problem, you see. We come here to clinic because we want the help because the child is sick.” (Caregiver, Interview, Phase 1)
This sense of being ignored or blamed left caregivers feeling confused about their child’s condition and how to manage it. Yet, caregivers had a clear view of what they wanted to discuss:
“… listen to a parent who come, as to what's been going on over the past couple of days, and why am I actually here, because I think that would be a good starting point, to say, ‘ok now do your routine check-up’. I find that to be a little bit of an issue sometimes, because I've been waiting for an hour.” (Caregiver, Interview, Phase 3)
In contrast to health workers, caregivers often conceptualised quality of care in terms of their level of participation in the consultation, indicating a need for caregivers’ voices to be heard and for their knowledge of their child to be a crucial part of determining the best care for their child that goes beyond dealing with the acute presentation on the day.
However, health workers reported numerous organisational barriers that limited their focus to acute symptoms, including having little time for routine care, limited health worker resources, limited experience in treating children, overcrowded clinics with long waiting times, requirements to prioritise critical questions about the presenting symptom as well as needing to conduct standard weight checks for calculating medication dosages.
“Sometimes it takes too long, because I work alone in the room, and I have about 30 patients, sometimes more the 30 that I see in a day, then it takes a while.” (Nurse, Focus group 10, Phase 3)
Further, health workers even questioned whether it was appropriate to offer more comprehensive care in this setting.
“When someone has been sitting here all day and the kid is screaming and they are sick, the mother is not psychologically in a space. I mean you can do a few, like look at the weight and do things that are red flags, that are critical, but you know the mother is not in a space, if she is sitting all day with a sick kid, to do a full comprehensive visit either.” (Doctor, Focus Group 8, Phase 3)
These problems were compounded by two broader contextual characteristics which shape how facilities deploy their health workers to care for children. First, verticalised care was the predominant pathway for children at all facilities with a limited number of nurses seeing children and each nurse was delegated to specific tasks.
“They have two dedicated nurses in child prep [triaging and weighing of children]. We've got someone dedicated for expanded immunization and PMTCT [prevention of mother to child transmission of HIV]. Then Mr ((name)) and Sr ((name)) render the child health.” (Manager, Interview, Phase 2)
Second was the role played by IMCI policy, which nurses felt played a fundamental role in structuring their consultations, underpinned by IMCI checklist documentation. The extent of this was illustrated by several nurses who reported that elements of the IMCI checklist were ingrained in their memory, including checking for danger signs, and ruling out cough, diarrhoea or ear pain.
“The IMCI, you know it by heart. You know it asks danger signs, it asks you cough, diarrhoea, ear.” (Nurse, Focus Group 2, Phase 2)
This method of consulting appeared to set fixed boundaries around the consultation, displaying a habituated practice that limits the possibility of including anything other than a discussion of acute symptoms, growth and feeding which the IMCI sequence follows.
“Because for the growth, you will only check when you are down here. Then you check what was my child’s weight. After you start with your symptoms...” (Nurse, Focus Group 1, Phase 1)
The use of standardised prompting limited the potential for caregivers to interject in the usual checklist process. This reflected our observations of consultations which displayed a predominance of questions designed to efficiently progress through a series of IMCI questions with limited caregiver involvement [12].
Taken together, the institutionalised focus of paediatric primary care to treat children’s long- term health condition symptoms as acute could be seen to be perpetuated by an interaction between IMCI policy, documentation-driven consultations with limited caregiver involvement and tracking of medical history, limited long-term health condition expertise and belief that children with long-term health conditions did not attend facilities, and a high demand for care with limited health workers resources. It was this organisational and social context into which the PACK Child intervention was introduced.
The introduction of PACK Child into paediatric primary care in the Western Cape
Expansion of paediatric primary care
Despite reporting a number of organisational barriers which limited their focus to acute symptoms, health workers within all pilot facilities viewed the PACK Child’s training programme and guidance for conditions like HIV, tuberculosis, eczema and asthma as enabling their management and diagnosis of long-term health conditions.
“For example, I can say PACK guideline is very helpful, because I'm going to mention like skin symptoms. I used to see a child with a rash, but I couldn't differentiate what is it really, but when I go to the PACK Child, I know I can name it. It has got its specific diagnosis. I know what it is. But when I look at the PACK Child and I look at the child, then I see exactly what is in the PACK Child, and also what kind of treatment. It's very helpful.” (Clinical Nurse Practitioner, Focus Group 7, Phase 3)
This enablement of health workers practice was often linked to a sense of improved professional competence in being able to more effectively meet children’s needs, in this case in their ability to support children aged over five years.
“So, with PACK Child it's much better, you feel more secure that now you can treat the child until 12/13 years old.” (Clinical Nurse Practitioner, Focus Group 4, Phase 2)
A key component of the PACK Child intervention that health workers viewed as critical in supporting them to make a shift from acute symptom management to a view of the child’s treatment over time were the guide’s algorithms for guiding diagnosis, treatment and referral (See Additional file 3 for an example of the algorithms from PACK Child). These views resonated with our observations of the PACK Child training sessions, where, through the medium of case scenarios, PACK Child trainers ‘scaffolded’ the skills of health workers by beginning with simple cases and then increasing the complexity in steps as they developed their competence in using the guide[21].
However, health workers expressed concerns about translating the skills developed within training sessions into their practice setting [12]. As the following extract from observational fieldnotes indicates, this difficulty led to a doctor reporting that she was hesitant about supporting nurses to prescribe inhaled asthma medication.
“In the asthma case presented in the session, the child presented with a recurrent wheeze for five days. The child was given a trial of an inhaler, but the clinicians omitted checking the bronchodilator response before prescribing. The doctor in the training felt that nurses would be prone to abuse inhalers if they were not assessing how previous episodes were managed and the correct diagnostic process followed including checking bronchodilator response.” (Field notes, observation of training session 7: Long-Term Health Conditions, Phase 3)
Here we see an interaction between the change that PACK Child is attempting to effect through guidance and training on how to treat long-term conditions, a primary care practice not habituated to check and track children’s medical history, an institutionalised focus to treat symptoms of long-term problems as acute conditions, and doctor’s perception that nurses would be ‘prone to abuse’ prescribing inhalers.
Despite this difficulty, the shift to enquiring about children’s medical history, considering root causes of their child’s condition, and tracking the course of long-term conditions, was appreciated by caregivers.
“What I say today is different because they never give us... you know when you are sick, they have to find the root of that, sometimes to go through what could be the cause of this, but they normally do a shortcut thing, especially here at the clinic. They just do the shortcut. So sometimes I see it keeps the baby, the baby keeps on suffering with the same thing because they never found the root of that. That's what I normally observe for myself.”(Caregiver, Interview, Phase 3)
This view of getting to the root cause was linked to extensive questioning that went along with using the PACK Child guide.
“Because it’s the third time. Sometimes you go to the doctor then the doctor says, just that one thing. Like this ((PACK Child guide)) was now nice. Everything was asked, and they have the patience to explain everything. And feel free to explain everything. Sometimes you go to the doctor you just cut you off because they rush you to get to another patient. Then that happens all the time.” (Caregiver, Interview, Phase 3)
Some caregivers described opportunities for them to explain their story and that health workers explained what was happening, indicating that they felt central to the decision-making process.
“Yeah, the way the doctor handled it. It was nice for me, because just for the fact that I can talk a lot of things ask lot of things. He come for his nose, but I could ask for this… she saw the marks of the eczema, almost like eczema.” (Caregiver, Interview, Phase 3)
However, the capacity for health workers to routinely provide this level of questioning was viewed as problematic by several health workers, despite caregivers noticing an increase in the depth of questioning and more opportunities for them to express themselves. Our observations of the PACK Child guide being used in consultations were that the perspectives of caregivers were rarely elicited[12]. Health workers explained that, because of the need to enquire more broadly in following PACK Child algorithms, as well as those of IMCI if the child was under 5 years, some questions and elements of algorithms were often bypassed. Instead health workers selected only what they considered was most appropriate or necessary in each consultation.
“Especially in clinics where we are strapped for time or short staff. Like today we have one sister doing all the sick children walking into the clinic. So, if she has to go through each little step, which is better, but she won't be able to see all the children. So, we tend to just skip to the problem, and ignore some of the routine.” (Doctor, Focus Group 10, Phase 3)
A frequently reported challenge for health workers in completing routine and symptom-based activities, as well as involving the caregiver and child in the consultation process, were the demands of completing Integrated Clinical Stationery alongside PACK Child.
“If you look at the paperwork, you write down on your IMCI form, you have to write down on your clinical as well, you have to write your script. We supposed to write in the child’s book ((Road to health book)), that we must be honest that is not done. You see how many different documents we need to write on. On top that, you starting to mix your medication, you are starting do all this. If you look at it, you more busy writing. You more focusing on writing instead of focusing on the child.” (Nurse, Focus Group 1, Phase 1)
Teamwork, patient flow and referrals
PACK Child was reported to have an impact on how health workers worked together and the referral of children. ENs, pharmacists, PNs and CNPs noted that the training helped to delineate different roles and responsibilities so that tasks were shared and enabled greater collaboration between health workers. This included a reconfiguration of which problems different cadres of health workers needed to manage, advise or oversee.
“What I have noticed is that she is always consulting, she is knowledgeable, almost to her utmost best of what is in PACK. But I have not seen her coming to me with a challenge she cannot go beyond. Even those kids that are referred to the emergency section. Sometimes, she doesn’t even come to me. She picks up the problem for the emergency and she send them without my intervention.” (CNP, speaking about an EN, Focus Group 2, Phase 2)
The “health system strengthening session”, which primarily focused on the flow of children through the clinic, facilitated changes in some facilities including one nurse deciding to weigh all children in consultation rooms rather than as a separate activity carried out by enrolled nurses. Some facilities reported that triaging of children was streamlined, and nurses felt equipped to identify children needing referral within the clinic.
“The other thing for triaging of the patients, the babies they really get emergency care much quicker, also their routine screening is so much easier with the length mat is there, everything is there. So, the staff have really benefitted from the training.”(Manager, Interview, Phase 2)
One of the training sessions was dedicated to embedding correct monitoring and interpreting growth in children. Nurses reported increased confidence in interpreting growth charts and alongside PACK Child screening tools they reported that they identified more children with problems that required referral. For this nurse, this was specifically in relation to identifying overweight children.
“We picked up lots of obese babies, of which now we are referring to the dietician and the dietician now has something to do. Before we were only picking up children with malnutrition. We didn't consider the obese, now we know when to refer, we know which weight is expected of each child, so we know when to refer. So now really it is of help.” (Nurse, Focus Group 2, Phase 2)
Eliciting and responding to psychosocial problems
According to health workers, use of PACK Child in consultations led to more psychosocial risk issues being identified in consultations, sometimes resulting in referral and resolution of these disclosures.
“It prompted you now with that section to ask for social problems. I also had one child: she didn't have an ID. Mum didn't have an ID that’s why she didn't register the child, and she can't apply for a grant, and I helped her. So that section is really good. It prompts you to ask those questions. In the past we overlooked it.” (Nurse, Focus Group 4, Phase 2)
However, our observations of consultations revealed that routine psychosocial risk questions, delivered in an embedded checklist approach to consultations were framed in a way to rule out problems instead of encouraging disclosure [12]. Furthermore, in some cases, where disclosures were made, the health worker could be seen to minimise its importance or not address the problem reported by caregivers. For one health worker the lack of expertise within facilities was a key reason why psychosocial issues are not fully addressed.
“We have a problem with psychiatrist. If you get the problem of abuse, then you must send the child to the hospital, because we don't have a person here every day, that's also a problem. Sometimes when you book the people, for that then the guy cancels his visit.” (Nurse, Focus Group 9, Phase 3)