We conducted ten facility manager interviews (one per facility); one focus group with 24 stakeholders including clinicians, policymakers and senior paediatric managers (involving four smaller group discussions); ten observations (one per facility) of waiting room and reception areas; and 53 observations with audio-recordings of clinical consultations with children and caregivers, (Phase 1 = 16; Phase 2 = 13; Phase 3 = 24), totalling 18 hours and generating 595 pages of transcripts. Forty consultations were conducted in English, eight in Afrikaans and five in isiXhosa. In Phase One, observations were interspersed between the eight PACK Child training sessions. Our analysis of these data identified clinicians reading aloud from the guide during consultations and difficulties using the guide alongside other medical documentation. This insight highlighted the importance of allowing time for clinicians to practise using the PACK Child guide and informed theoretical sampling of further observations in Phase Two and Three, which we timed to be conducted once the PACK Child training sessions had been completed at facilities. Following the high proportion of children presenting with acute infections in Phase One, we also attempted to sample children presenting with chronic conditions in Phases Two and Three. In Phase Three, one child with asthma and nine with eczema were included.
First we report how macro-, meso- and micro-contextual features of paediatric primary care had an impact on the integration of PACK Child at the point of delivery within consultations. In Tables 2 and 3 we have set out the macro and meso elements of context, with illustrative quotes from facility manager interviews. We then present extracts from the audio-recorded consultations, providing telling cases of how macro- and meso-contextual features were made salient by clinicians at a micro-contextual level, specifically in terms of how they used the PACK Child guide alongside other documentation and how they interacted with children and caregivers.
Table 2. Macro-contextual features of paediatric primary care in Western Cape, South Africa
Type of macro discourse, policy in play
|
Description
|
Integrated Management of Childhood Illness (IMCI) [9]
|
World Health Organisation’s IMCI is an integrated strategy that is targeted at reducing death, illness and disability, and promoting growth and development for children 0-5 years old, this strategy comprises both preventive and curative elements and has three components targeted at improving skills of primary care clinicians, health systems functioning, and family and community health practices. Principally delivered by nurses, IMCI is underpinned by a risk minimisation approach with the main aim of a provider-patient contact to ensure all children with danger signs are referred to the next level of care and provide reassurance that growth monitoring (and associated interventions e.g. Vitamin A) and immunisation take place.
IMCI was introduced in South Africa in 1996 with a primary implementation focus on training and capacity building of clinicians [17]. In the Western Cape, the main manifestations of IMCI are the chart booklet, last updated in 2014, a training programme that targets professional nurses with the intention that they then see children, and the IMCI checklist (Additional file 2).
|
Primary Health Care Standard Treatment Guidelines (STG) and Essential Drug List (EDL) [43]
|
National level guidance comprising evidence based standardised recommendations for healthcare workers, in order to promote equitable access to safe, effective, and affordable health medications. These guidelines are not specific to children and include adults. There is limited guidance for neonates. Medication for children is recommended according to weight bands.
|
Expanded Programme on Immunization (EPI SA) [44]
|
Vaccination schedule updated in December 2015, implemented in provincial and municipal clinics, reducing in frequency after 18 months old up to 12 years. (https://www.westerncape.gov.za/assets/departments/health/vaccinators_manual_2016.pdf)
|
First 1000 Days Initiative [38]
|
The first 1000 days initiative aims to improve the nutrition of mothers and children during the first 1000-day window to ensure children get the best start to life and the opportunity to reach their full potential, starting from conception, moving through pregnancy, birth, and after the first 2 years of life (https://www.westerncape.gov.za/first-1000-days/).
|
Nurturing Care Framework [39]
|
The Nurturing Care Framework provides a roadmap for how early childhood development unfolds and how it can be improved by policies and interventions. It outlines: why efforts to improve health, well-being and human capital must begin in the earliest years, from pregnancy to age 3; the major threats to early childhood development; how nurturing care protects young children from the worst effects of adversity and promotes development – physical, emotional, social and cognitive; and what caregivers need in order to provide nurturing care for young children (https://apps.who.int/iris/bitstream/handle/10665/272603/9789241514064-eng.pdf ).
|
Nurse restrictions on prescribing
|
IMCI-trained nurses treating children are typically professional nurses with prescribing limited to treating acute symptoms only. Restrictions are in place for medications used to manage long-term conditions including inhaled corticosteroids for asthma and topical steroids for eczema. This results in referrals, with additional waiting time and contact, to clinical nurse practitioners or doctors for prescriptions to treat chronic conditions.
They need to treat their client according to their scope of practice. They can only prescribe according to a schedule, in fact according to the national EDL [Essential Drugs List], where it says for this condition you can only give a certain treatment. (Manager interview, Phase 1)
|
Chronic Illness Management and training for over 5s
|
Nurses lack experience with chronic illness management at primary care level.
“I: How often do you come back for the asthma medication?
CG: They didn't put her on medication. They just said that I must see...look after. I must just keep an eye that her chest doesn't tighten. I must bring her back immediately once this happens, or take her to the hospital, but they gave her an inhaler.” (Caregiver, Phase 2)
No specific guidelines or stationery for children above 5, until introduction of Integrated Clinical Stationery (Western Cape only – see below)
“Our clinical notes for the child older than 5 years we only use our clinical notes to make an entry we don't have a form like this for children older than 5 years.”
(Manager, Phase 2)
|
Road to Health Booklet (RtHB) [35]
|
RtHB provided as patient medical record (Additional file 4), widely implemented in PHCs throughout South Africa. Underpinned by philosophy to support well child routine visits, continuity of information and provide a hand held record for caregivers that summarises the child’s health in the first five years of life. The RtHB was substantially revised and expanded to include health promotion messages in February 2018 (https://www.westerncape.gov.za/general-publication/new-road-health-booklet-side-side-road-health).
|
Integrated Clinical Stationery (ICS)
|
ICS was developed by the Western Cape Department of Health in 2015 following identification of a gap in clinical recordkeeping for children during a pilot audit in facilities. Facility records for routine care were found to be inadequate and IMCI checklists were scattered in patient’s folders in no particular order. ICS was designed to meet the need for facility and visit-based stationery that integrated well and sick child care. The stationery (Additional file 3) was piloted in five facilities from July 2016 and implemented in half of PACK Child pilot facilities at the time of this study. It has since been adopted for Province-wide implementation.
|
Patient co-payments
|
In South Africa primary care is free at point-of-care including access to a wide range of medications and investigations for people of all ages. Hospital-level care is free for all pregnant women and children under 5.
|
Table 3. Meso-contextual features of paediatric primary care in Western Cape, South Africa
Institutional relations, workforce arrangements, local policy
|
Description
|
Services typically provided by municipal and provincial facilities.
|
Municipal PHC facilities typically provide well child services (i.e. growth monitoring, development screening and immunisations on appointment basis), and services for sick children aged 0-5 years. Provincial government facilities provide services to all sick and well children, with a high proportion of children aged 0-5 years.
|
Delineated clinical roles and multi-disciplinary working
|
Professional nurses trained in IMCI routinely see sick children under the age of five. In rural facilities, CNPs are typically the first clinician to consult a child. Doctors do not routinely see children other than those who are severely ill or attending follow-up clinics for TB or HIV care. Enrolled Nurses typically run immunisation services and perform growth monitoring.
I: Do any doctors see children?
M: Yes
I: And is it only when they need they need extra assistance for cases, or do they see them regularly?
M: Yeah, she prefers to see all those that are on ART and if it's an emergency. (Manager Interview, Phase 3)
Facilities frequently rotate their staff.
M: Most are IMCI trained, on a regular basis I rotate but certain such as ARV and TB we cannot rotate as it is specialist. So that if someone is sick, others can float because of this. This ensures that the service is accessible, they all have the exposure.” (Manager interview, Phase 1)
|
Caregiver seeking behaviour
|
Children with HIV, TB and other chronic conditions referred to larger PHC facilities (“community health centres”)
M: No, we don't see many chronic we refer them to ((name)) Community Health Centre..
I: So they don't come here for repeat scripts or...
M: No. So when they... it’s whereby maybe there will be diagnosed for the first time here, for instance if the client is coming, let's say for eczema, that child will be treated for eczema. If the child maybe got severe eczema, then he will get transferred to ((name of tertiary level hospital)) then ((name of tertiary level hospital)) will bring it back that this child needs to be treated like a chronic child. There that time will refer back because they’ve got all the resources at ((name of hospital)) unlike us. (Manager interview, Phase 2)
|
Flow of children through facilities
|
Registration: For children requiring immunisations, care was typically accessed through an appointment system. Caregivers with a scheduled visit for an immunisation or growth monitoring arrived with their RtHB and placed it at a specific registration point with a box for appointments. Caregivers with children without appointments, coming for an acute condition or having missed scheduled visits, placed their RtHB in the non-appointment box at the registration desk. Patient records were subsequently retrieved by reception staff and placed in the weighing and triage area according to the order in which they arrived.
Weighing/ and triage area: The weighing and triage area was either a room or open area where children were weighed and reason for the visit established. In the majority of facilities an enrolled nurse, with more limited clinical training than professional nurses, was allocated to the weighing area. Weights were measured but typically not plotted or used to interpret growth. Heights were not routinely measured in most facilities. Temperatures were taken if the child was feverish. Both sick and well children came through the weighing/triage area. Guided by the child’s RtHB, the nurse determined if the child required vitamin A and deworming medicine. Children were separated into emergencies, well, or sick child visits and allocated to the relevant nurse, typically based on the caregiver’s report of the presenting complaint, rather than through the nurse’s clinical assessment. In two facilities, this area also functioned as the immunisation room. In one facility, children were weighed and given immunisations in the consultation room. The triage area typically had a dehydration corner and breastfeeding area.
Well child: Typically seen in the immunisation room. Caregivers and children waited in the waiting area to be called by the allocated nurse. The immunisations were mainly carried out by an enrolled nurse but in some cases, a professional nurse. Following the immunisation, the nurse plotted the child’s weight in the RtHB. Caregiver/child would then leave with their updated RtHB.
Sick child: Between one and three nurses in each facility were allocated to see sick children. These nurses were generally professional nurses, who then reported to a clinical nurse practitioner or doctor. In two facilities, sick children were prioritised and seen before adults. If the child was classified as an emergency, they went straight to the trauma room. Most of the consultation rooms for sick children had a stock of medication to dispense but, in some cases, caregivers had to go to the pharmacy to collect their prescription. In one facility, caregivers/children were required to see approximately four people if also needing treatment for Prevention of Mother to Child Transmission (PMCT) of HIV, including nurses to: triage, give immunisations, treat acute conditions and deliver PMTCT.
|
Local protocols/documentation for treating children
|
- Immunisation, developmental screening, deworming, vitamin A supplementation, health promotion and growth monitoring: RtHB and IMCI checklist or Integrated Clinical Stationery (ICS)
- Sick child (0-5 years): IMCI checklist or ICS
- Sick child (6 years and above): ICS.
- Referral forms
Provincial departments of health require facilities to complete stationery with IMCI components for consultations with children 0-5 years. ICS stationery also includes information about family, social context and chronic conditions (other than HIV and TB). ICS pages designed in columns to track previous visits.
Province applies IMCI audit tools to determine clinician alignment with IMCI guide and whether facilities are treating expected numbers of children. IMCI audit data fed back to national Department of Health and WHO figures on child mortality.
|
Pattern of care-seeking from PHC services
|
The primary health care service offering is chiefly structured as preventive care (immunization and growth monitoring) and curative (acute illness), both in children under 5, which over time has shaped care-seeking patterns at community level. Children with chronic illnesses such as asthma rarely receive routine care in primary care, and are often referred to secondary and tertiary services which are usually some distance from communities, or the Community Health Care Centres where there is little continuity of care outside HIV and TB treatment programmes. This perpetuates poor care seeking outside acute episodic illnesses and does not grow an understanding of regular, planned care for children with long-term health conditions. Caregivers frequently make use of an extensive network of private General Practitioners who provide acute episodic care and medication for a fixed fee, but rarely chronic care.
I: Do you think many children come with a chronic illness problem, or do they come with an acute symptom?
M: The majority is acute symptoms, but here and there we have babies that is on asthmatic treatment also, but the majority is acute, and the majority is pneumonia cases, severe pneumonia cases. (Manager Interview, Phase 3)
|
Referrals and continuity of information
|
Facilities reported rarely receiving feedback from hospitals following patient referrals. Caregivers received discharge summaries from referral centres but did not routinely bring them to PHC facilities.
|
We now focus on the interaction between a health system geared towards preventive care and management of acute illnesses in under fives with the more comprehensive view taken by PACK Child. A particular challenge was how clinicians worked to incorporate the training and guide alongside pre-existing practice, while complying with provincial requirements to complete IMCI checklists and in half of the facilities, new Integrated Care Stationery for auditing the clinical management of children aged under five. Figure 1 is an extract of observational field notes recorded by a researcher over a three-hour period observing a facility waiting room area during Phase One. The diagram shows lines of benches, three consulting rooms, a triage area staffed by enrolled nurses and a breastfeeding corner. The field notes report a two-hour period of observing the triage desk. Triage commenced three hours after caregivers and children arrived at the facility, following delays in retrieving the child’s medical notes. Children presented as well or with acute symptoms, typically a rash, sore throat or fever. Children were weighed at the triage desk. The enrolled nurse did not plot the weight or interpret the growth of the child. Once caregivers had answered the same three questions (i.e. age, weight, problem) there was no further clinical assessment until their consultation with a nurse. These field notes represent a broader pattern we observed, of caregivers attending facilities with children aged 0-5 years when they had acute symptoms, or needed immunisations and their growth monitoring; and PHC facilities predominantly oriented to deploying nursing staff to consult and treat children’s symptoms as discrete episodes with little consideration of the child’s long-term health needs.
The impact of the organisational context on the use of PACK Child during consultations
Clinicians participating in consultation observations included clinical nurse practitioners (n=17), professional nurses (n=11), doctors (n=3) and enrolled nurses (n=2). Three children were aged under two months, 37 between two months and five years, and 13 children were five years or older. Reasons for seeking a consultation for their child predominantly included acute symptoms suggestive of a viral infection, including rash (n=14), cough (n=7) and other respiratory symptoms (n=7). Ten children presented with likely long term conditions – eczema (n=8) and asthma (n=2). Remaining reasons included eye symptoms, gastro-intestinal problems, injury and visits for immunisations. We now examine how the macro- and meso-contextual features impacted on clinician-caregiver-child interactions. In doing so, we are observing an interaction at a micro-contextual level, between the approach of PACK Child with a focus on children aged 0-13 years covering acute and long-term health conditions and screening of the well child, and the existing healthcare system where IMCI policy [9] and use of the RtHB [35] are embedded, and ICS is being introduced.
Clinical assessment questions
In our sample of 53 audio-recorded consultations we identified and coded 1218 clinical assessment questions. Table 4 displays four important features about the nature of these questions in our sample. Firstly, the three highest number of question types were oriented to topics required by IMCI – acute symptom management (wider information gathering and reported complaint) and growth monitoring, immunisations and questions about feeding, making up 56% of all questions. This partly reflects the characteristics of our sample with 37 out of 53 children presenting with acute physical symptoms but also reveals the orientation to IMCI policy within consultations. Secondly, 84% of psychosocial questions were delivered as polar questions, with only 14% delivered as content questions (i.e. questions with “what”, “where”, “why”, “how” formulations). Polar questions [45] are questions that are either interrogative or declarative and are designed to prefer either a “yes” or “no” response. In the process of clinical assessment, clinicians’ use of polar questions have also been shown to frequently prefer no problem answers [33, 46]. For example, “And she is weeing ok?” is a declarative question designed to prefer a yes and rule out dehydration, whilst the inclusion of “at all” tilts the interrogative “Has she vomited at all?” to prefer a no and the absence of vomiting. Applying this to questions designed to elicit potentially sensitive psychosocial issues, the high proportion of polar questions relative to content questions suggests that clinicians did not design questions which invited disclosure of psychosocial problems around the child. Thirdly, the number of questions about long-term health conditions (other than TB and HIV), located in 18 out of the 53 consultations shows that clinicians sometimes identified symptoms as markers of potential chronic conditions, prompted by the routine care and long-term condition pages within the PACK Child guide. Questions included those aimed at determining if the child had an allergy, asthma, mental health or behavioural difficulties. Finally, we identified only six questions that elicited the caregivers’ concerns, ideas or expectations and only nine questions that assessed past medical care (excluding TB and HIV). While the PACK Child intervention does not specifically prompt clinicians to elicit caregiver’s perspectives, this finding suggests that the clinicians in our sample did not habitually ask questions that attempted to gain a picture of the child beyond the specific problem presented on the day.
Taken together, these different features of clinical assessment questions suggest that clinicians were negotiating an institutionalised practice to treat symptoms as acute episodes that need to be assessed according to level of risk on the day, with a different approach which views symptoms as potential indicators of underlying conditions. In doing so, clinicians could be seen to be operating in a transitional space between a risk minimisation approach on the day to risk minimisation over time. The challenge in making this transition is most clearly seen in the use of polar questions to elicit psychosocial issues. Rather than viewing the predominance of polar questions designed to limit disclosure of psychosocial issues as a failure of nurse performance, we can see these questions as a manifestation of the wider healthcare system in which they were operating. Working within an everyday context where large numbers of children from impoverished backgrounds with high rates of adversity present with acute symptoms that clinicians need to assess for risk, monitor growth, check immunisations and feeding in busy, time-constrained consultations with limited confidential spaces and referral resources, it is unsurprising that nurses adopted to phrase these questions in such a way that it limited the possibility of disclosure of sensitive psychosocial problems.
Table 4. Clinician question coding by type and structural form
|
Structural form of Question
|
|
Question Type
|
Question Example
|
Number of consultations N (%)
|
Polar N (%)
|
Content N (%)
|
Alternative
N (%)
|
Total
N (%)
|
Wider information gathering
|
"Any symptoms that you are having concerns about, besides his skin now?"
|
41 (77)
|
194 (77)
|
50 (20)
|
7 (3)
|
251
|
Assessing feeding/growth monitoring/ immunisations
|
"So you are no longer breastfeeding?”
|
37 (70)
|
165 (69)
|
69 (29)
|
6 (3)
|
240
|
Asking about reported complaint
|
“Coughing for how many days?”
|
45 (85)
|
119 (61)
|
67 (34)
|
9 (5)
|
195
|
Eliciting psychosocial issues
|
“And you do you have support from the child’s father?”
|
29 (55)
|
143 (84)
|
24 (14)
|
4 (2)
|
171
|
Asking about HIV or TB
|
“Have you tested for HIV when you were pregnant?”
|
36 (68)
|
95 (71)
|
32 (24)
|
7 (5)
|
134
|
Asking about treatments
|
“What tablet did you give?”
|
31 (58)
|
86 (72)
|
27 (23)
|
7 (6)
|
120
|
Asking about other long term health conditions
|
"Is he a known asthmatic?"
|
18 (34)
|
50 (89)
|
6 (11)
|
0 (0)
|
56
|
Asking about family planning
|
“And you yourself are you on any family planning mommy?”
|
19 (36)
|
26 (72)
|
9 (25)
|
1 (3)
|
36
|
Assessing past medical care other than TB/HIV
|
“So the child hasn't been treated at any other institution before for anything, for this problem?”
|
7 (13)
|
6 (67)
|
2 (22)
|
1 (11)
|
9
|
Eliciting caregiver concerns, ideas, expectations
|
“Is there anything that you would like to ask?”
|
5 (9)
|
6 (100)
|
0 (0)
|
0 (0)
|
6
|
Total
|
|
|
890
|
286
|
42
|
1218
|
|
|
|
|
|
|
|
|
|
>
Notes: This table shows the number and proportion of consultations for each question type in the sample of observed consultations. It also shows the number and proportion of different structures within each question type. Polar questions prefer a yes or no response. Content questions (or Wh- questions) are open questions inviting new information whereas alternative questions present two or more options embedded in the question. Proportion of consultations is a percentage of all 53 consultations. Proportion of polar, content and alternative questions are percentages within each question type category.
Introducing the PACK Child guide into routine consultations
An issue for the delivery of PACK Child consultations is how clinicians negotiated different routine care and symptom-based activities, various sections of the PACK Child guide, whilst also completing necessary documentation. The extract in Box 1 provides a “telling case” of this negotiation [40], taken from a consultation conducted in one of the facilities participating in Phase Three of the study, which involved a nurse using PACK Child to manage and treat a three-year-old child presenting with a cough.
Box 1: Nurse navigating PACK Child with IMCI checklist and RtHB
Consultation from a Phase 3 PHC facility with a mother and three-year-old girl presenting with a cough she has had for three days. The nurse begins the consultation using the IMCI checklist where she documents the cough as the presenting symptom, enquires about the presence of diarrhoea and the caregiver shows the nurse the child’s skin rash. The extract begins after 2 minutes into the consultation.
Nurse (N) or Caregiver (CG)
|
Nurse of caregiver talk
:: Elongated vowel
[ ] Overlapping talk
(1) Timed pause, (.) less than 1 second.
°° Hearably quieter speech
CAPITALS denotes hearably louder speech
Underlined talk indicates spoken with emphasis
Heh heh denotes laughter
(( )) Further information
|
Use of PACK Child guide, IMCI checklist and RtHB
|
N
|
O::kay a::nd uh (.) feeling hot at night? Or during the day?
|
N writing on IMCI checklist under “Fever” Yes or No
|
|
(1.0)
|
|
CG
|
[No::]
|
|
N
|
[No] okay and u::m (.) can I see your hand and the babies hand? °I am going to try to be quick°
|
N checking ‘Anaemia’ on IMCI checklist
|
|
(??)
|
|
N
|
Okay thank you. An::y (.) what is your HIV status Si:si::? ((Sister in isiXhosa))
|
N working through IMCI checklist “Consider HIV infection”
|
CG
|
[Negative]
|
|
N
|
[Your HIV]? Negative
|
|
CG
|
Huh
|
|
N
|
When, when did you, whe:n did you?
|
|
CG
|
You are the one who did la:st month.
|
|
N
|
Heh heh heh [heh heh heh] ((Nurse realises she forgot that CG has already taken HIV test))
|
|
CG
|
[Heh heh heh] When I come with ((name of child))
|
|
N
|
Okay. O::kay. U:H How old is this baby FIRST?
|
|
CG
|
She is two years three mo:nths
|
N opens PACK Child to content page
|
|
(3.0)
|
N looks at RtHB
|
N
|
O::kay, we go to a content page which is u::h page um (2) u::hm 50 for cough and also we go for routine care which is page u:h 14. She is, how old is she now?
|
N opens PACK Child routine care page to check what she needed to do.
|
CG
|
Two:: yea::rs
|
|
N
|
Mmm
|
|
CG
|
A:nd three months
|
|
N
|
Two years and thre:e months. Two years is here, we must check the weight.
Let's see the weight, the weight is 16 and where is he:r card? Is here ((child coughs)). HAIBO ((surprised expression in isiXhosa)) SISI you are coughing ne: ((Afrikaans particle word meaning “isn’t that so” used for emphasis))
|
N reading from routine care page
N searching for RtHB
|
CG
|
Mm
|
|
N
|
16 point (.) plot the wei::ght. 16 point 6. She is two years a::nd?
|
N plotting weight in RtHB
|
CG
|
Three months.
|
|
N
|
And three mo::nths (1) March April May June Ju:ly (2) and is 16 point six (2) hmm (12.0) sixteen (.) which is 16 point 6 (.) Yoh! She is growing very well ne
|
N showing CG that child is growing well.
|
The transcript of this consultation shows the predominance of different medical documents and guidelines which clinicians had to navigate within the consultations, in this case the IMCI checklist, RtHB and PACK Child guide. Following a question about the duration of the child’s cough, the extract begins with the nurse using the IMCI checklist to complete three tasks, asking about the child’s temperature, examining the child’s hands and checking the mother’s HIV status. For each of these tasks we can see how the IMCI checklist plays a key role in steering the nurse questioning and sequence of activities within the consultation. At two minutes and 47 seconds, and after completing the IMCI checklist, the nurse opens the PACK Child guide for the first time whilst also referring to the RtHB. The nurse identifies which page in the guide deals with coughs but also the routine care page, where each PACK Child consultation is intended to begin. The nurse selects the routine care page and checks what needs to be covered in the consultation. Prompted to check the child’s weight the nurse then searches for the RtHB and plots the child’s weight as required.
Following the end of this extract the nurse then continues to check items prompted on the PACK Child routine care page, including TB risk, immunisation status, vitamin A and deworming. After completing these tasks at 10 minutes and 30 seconds, the nurse states that “we are going to the real problem now” and turns to page 50 in the guide to address the child’s cough. The numerous pauses in this extract, elongated vowels by the nurse and the sound of the nurse searching for different pages (as heard on the recording), indicate the work the nurse is doing to navigate and complete all three documents and demonstrate the central role of documentation within paediatric consultations.
Box 2. Negotiating caregiver report of behavioural and family problems
In a Phase 3 facility a 12-year-old boy presents for an appointment with an ear problem. During the consultation the caregiver voluntarily discloses that the child has a history of Fetal Alcohol syndrome, takes Ritalin for behavioural problems (implying likely involvement of tertiary service because of limited access to Ritalin), and has a difficult relationship with a largely absent mother. Despite evidence that the nurse is listening to the caregiver’s concerns about family life, the nurse does not discuss the child’s use of tertiary or social services and she does not refer to the PACK Child guide which includes pages on how to manage behaviour and anger problems as well as potential child abuse.
Nurse (N) or Caregiver (CG)
|
Nurse/caregiver talk
High pitch
Underline – spoken with emphasis
[…] sequence of consultation not included
|
Use of PACK Child guide
|
N:
|
Is is his own mother still involved in his life?
|
Opens to contents page
|
|
(0.7)
|
|
CG:
|
Noo::
|
|
N:
|
[She doesn’t…]
|
|
CG:
|
[She’s her father] is her father is raising two kids of hers those two are working now. (1) Her father is also a FAS ((Fetal Alcohol Syndrome)) baby (1) I say every father gets his packet.
|
|
N:
|
Mhm
|
|
CG:
|
They gave him she had tw::o, three children minimum, by a gu:y, two boys and a a girl and she dropped the children by the father and she left (1) she’s now she is a year gone from there now.
|
|
N:
|
Mhm
|
|
CG:
|
And here he is if she comes she just come and then he fights with her (1.5) because she pu::lls him and they’ve got that anger. And and I tell her she mustn't pull him because he don’t like people to pull him around, and she got a habit of that ‘Kom met my saam’, ‘come with me now’, you know? (1.5) so many times and I told him, ‘you mustn't fight with a mother’ that is still your mom (1) irrespective.
|
|
|
(1.5)
|
|
N:
|
So you said he is got sore throat?
|
|
Box 3. Using PACK Child to make a transition from acute symptom to chronic illness management
In a Phase 3 facility a four-year-old girl reports to the clinic with a cough, recurrent wheeze and at the beginning of the consultation the mother reports that the child has asthma. The child was nebulised before the consultation, and no wheeze is heard on auscultation by the nurse. The expected route through the PACK Child guide would be to start with the routine care page for every visit, then refer to the wheeze symptoms page to manage acute symptoms, finishing with the asthma routine care in the long-term health condition section.
The clinical nurse practitioner initially refers to the cough page in the PACK Child guide and then navigates to the recurrent wheeze page. She diagnoses the child with allergic rhinitis and prescribes a nasal spray and cetirizine. The mother reports having enough “pumps” but the nurse doesn’t clarify what this includes and prescribes budesonide metered dose inhaler, advising the caregiver that it needs to be taken twice a day and Ventolin (salbutamol) used when necessary. The nurse only briefly refers to the asthma routine care page and does not ask the caregiver about the child’s history of exacerbations or hospitalisations. However, following PACK Child the nurse advises the caregiver to book a review appointment in three months.
|
Nurse/caregiver talk
(…) unclear talk
|
Use of PACK Child guide
|
CG
|
She is asthmatic, she comes here for oxygen. I do put her on the nebulizer at home, but it doesn't actually help, because she was coughing all week. I had her on the nebulizer last night, but then this morning I told her it would be better if I bring her for the oxygen. They did examine her, they gave her a dosage. So they gave her one this morning. Like the cough just didn’t want to go away
|
|
|
(…)
|
|
N
|
Okay, the mom is complaining of a cough, so I go to the contents page.
|
|
CG
|
(…) She’s forever chesty (...).
|
|
N
|
The child with breathing problems may have noisy breathing, wheeze. Did she have a wheeze this morning, before they nebulized her?
|
Checking PACK Child cough page
|
CG
|
Last night they nebulized her.
|
|
N
|
And this morning I saw that they gave her a nebulizer?
|
|
CG
|
Umm no, no::t this morning. Probably they gave her oxygen, yes.
|
|
N
|
But it’s a nebulizer.
|
|
CG
|
Okay
|
|
The extract in Box Two demonstrates a lack of information provided by tertiary or social services surrounding the child’s behaviour and problems with his parents, with the nurse needing to decide how to respond within the constraints of a time-limited consultation which also required her to tackle the child’s sore throat symptoms. Despite the availability of pages within PACK Child that guide the clinician on how to manage symptoms of behaviour, anger and abuse, thereby offering the opportunity for the nurse to support continuity of care between primary and tertiary services, the nurse instead redirects the focus from a complex set of psychosocial issues back to the acute physical symptom.
In contrast, the extract in Box Three illustrates a nurse operating in the transitional space between a health care system structured to focus on treating acute symptoms and PACK Child that supports ongoing care of long-term conditions. The clinical nurse practitioner, using the PACK Child guide is able to prescribe an inhaled corticosteroid for asthma, successfully diagnose comorbid allergic rhinitis, and books a follow-up appointment for the child. However, the nurse doesn’t explore which inhalers the child is already using, follow the guide as instructed in the training programme, or ask questions about previous exacerbations or hospitalisations.
Boxes 1-3 provide “telling cases” [40] which empirically expose a broader tension between a primary care system oriented to acute symptom management and PACK Child’s focus on care for the child over time, illustrated through nurses’ use of different documentation (Box 1); tensions between PACK Child’s orientation to routine care and psychosocial issues and a healthcare system oriented to acute physical symptoms (Box 2); and nurses having some success in using PACK Child to treat chronic conditions but struggling to orientate to a view of the child’s condition over time (Box 3). These instances triangulate with the ethnographic observational data (Figure 1) that showed a predominance of children under 5 presenting at facilities with acute symptoms, interviews with facility managers who reported children with chronic illnesses were routinely referred to tertiary level hospitals (Table 3), and the analysis of questions (Table 4) that found clinicians predominantly asking questions required by IMCI, psychosocial questions designed to minimise rather than invite disclosure of problems, and a scarcity of questions that attempted to elicit caregiver perspectives or the child’s medical history.