Evidence Centre seminar: October 2021
Published: October 10, 2021
This virtual seminar featured two presentations on aspects of Health Services and Children.
Medical Child Abuse
Dr Patrick Kelly, paediatrician and clinical director of the Starship child protection team, and Valmai Copeland, principal with the Evidence Centre, presented on child protection in a medical setting focusing on medical child abuse. The Oranga Tamariki Professional Practice Group commissioned a synthesis of international literature on medical child abuse which particularly considered best practice in social work when a child has experienced harm from medical child abuse (also known as factitious disorder or Munchausen’s syndrome by proxy). This rare disorder can have tragic impacts on the lives of those affected. Dr Kelly spoke from his broad practice experience and Valmai focused on the findings of this report.
VALMAI COPELAND: The topic of Medical Child Abuse came about as a result of a request from our professional practice group, and many of you will be familiar with Lorraine and with Michelle from that group. We were particularly interested in the links between Medical Child Abuse and social work practice, and went out and commissioned Allen & Clarke to do the review for us. In particular, Jacinta Cording held the keyboard on this piece of work, and it was a very rapid piece of work. We moved from commissioning to having an end product in three weeks, so that's pretty fast for doing this type of thing.
We focused on articles from 2010 onwards, but included research from before then if it seemed significant, and we searched both for international and New Zealand-based research. We had multiple uses. We wanted to know what the current understanding of the topic was, so Medical Child Abuse, also known as factitious disorder imposed upon another, or resulting from factitious disorder imposed on another, and some of you will be familiar with the name of Munchausen syndrome by proxy. It had multiple intended uses, to learn of our current understanding of the topic, to share with our workers, particularly social workers, and to inform professional practice here in Oranga Tamariki, and to look towards the future.
The focus was on harm to children, rather than the much broader picture. And 44 journal articles which were relevant and in the time period of particular interest were focused on. What we found, though, was that there was gaps in the literature. There was very little that was actually directly relevant to whānau Māori particularly, or other indigenous populations. What I learnt from this research activity was reports of Medical Child Abuse in New Zealand are rare, and also it's rare internationally. It's probably underreported, and identification can be difficult.
Consequences are often severe and long-lasting for the child, but also for their family. The person who imposes the harm is often the mother, and social-work focus is on the safety of the children. So, that's a very brief romp through our literature review. That review was available on the Oranga Tamariki website under the research area. So, if you want the full story, that's where you'll find it. Dr Patrick Kelly, over to you.
DR KELLY: I have three objectives, really, for, I think, what I've got in the next 15 to 20 minutes. One is to talk about, "What's in a name?", secondly, I'm hoping to give you some appreciation of the complexities of this form of abuse, and probably thirdly, and most practically, talk about an approach towards it. But firstly, what's in a name? Many people are familiar with the term Munchausen syndrome by proxy, and that originated in an article published by a paediatrician, Roy Meadow, in The Lancet in 1977. And I just have put his summary of the two cases he reported up on the screen so you get some idea of the scope and complexity of the way these children present. So, first –
VALMAI COPELAND: Could we get you to reshare your presentation? We can only see your face.
DR KELLY: Oh, really? Okay.
FEMALE SPEAKER 1: No, no, I can – no, I can see it.
FEMALE SPEAKER 2: I can see it.
FEMALE SPEAKER 3: I can see it.
FEMALE SPEAKER 4: Yeah, it's there.
FEMALE SPEAKER 5: I can too.
MALE SPEAKER: So can I.
FEMALE SPEAKER 6: I can see it too.
FEMALE SPEAKER 7: And I can see it. You're all good, Patrick.
FEMALE SPEAKER 8: Yeah. Very clear – very clear for me. All good, Patrick.
FEMALE SPEAKER 9: I think most participants can, but perhaps if you can't, let us know.
DR KELLY: So, the first case was a child where over a period of six years – and it uses the word, "the parents", but as Valmai has already alluded to, it was actually primarily the mother -- systematically provided fabricated information about their child's symptoms, tampered with urine specimens to produce false results, interfered with hospital observations. So, the child had innumerable investigations and anaesthetic, surgical and radiological procedures in three different centres.
And many cases will be very similar to that, and it's complicated in every country in the world by the fact that these children often tend to move from one centre to another, not necessarily in terms of their residence, but they may well be referred from one specialist to another. Because what tends to happen is, because these cases are seen as very complex or insoluble, they tend to graduate up the medical hierarchy, and you end up, therefore, having more and more health professionals involved, which makes – which is one of the complexities.
The second was a child whose mother was essentially poisoning the child with salt, and again, the child presented in multiple different centres and eventually died.
FEMALE SPEAKER: Wow.
DR KELLY: Now, he termed this Munchausen syndrome by proxy, and the reason he did that – hopefully I can move to the next – was for this famous fictional novel with the adventure of Baron Munchausen, which was essentially an 18th Century raconteur's novel about this bizarre guy doing bizarre things. And the reason he chose the term was that there was an adult psychiatric condition recognised called the Munchausen syndrome, in which adults would fabricate or induce symptoms in themselves, presumably in order to gain some benefit to themselves from being engaged in medical therapy.
Now, there are all sorts of complex, psychological reasons for that, but Roy Meadow was applying a condition to children who suffered harm as a result of how certain behaviour on behalf of their parents. And he actually intended the diagnosis to be made in a child, not in the parent. It was about the harm caused to the child rather than the motivation of the parent. And in some ways the name Munchausen syndrome by proxy has become something of a curse, because what it does is make people focus so much on the bizarre motivation of the perpetrator that sometimes they lose sight on what's happened to the child.
So, that's why the terminology that, certainly, we prefer at Starship is Medical Child Abuse, which is terminology proposed by Tom Roesler and Carole Jenny in 2008. Now, Tom Roesler is a child and adolescent psychiatrist, and Carole Jenny is a paediatrician, probably the world's leading paediatrician in the area of child abuse and neglect. And they described a large case series of close to 200 children that they dealt with in their hospital on Rhode Island, where they actually had established a treatment centre where they would work with families either with or without Child Protection Services, depending on the severity of the condition, to try and fix this problem.
And their definition was:
"Medical Child Abuse occurs when a child receives unnecessary and harmful or potentially harmful medical care at the insistence of a caregiver."
And they stated, and I agree with them, absolutely, that we prefer the term Medical Child Abuse because it focuses on the potential or real harm being done to the child, regardless of the perpetrator's motivation.
So, if you want to think of the health system on the left, doctors, and nurses, and hospitals in a medical setting, and the hammer on the right is a fairly blunt way of pointing out that essentially in medical child abuse the health system becomes the instrument by which a perpetrator hurts the child. And that is the key issue here, that a perpetrator, typically the mother, is hurting a child, often in very severe, and prolonged, and emotionally harmful and physically harmful ways, and the medical system is simply a tool in the hand of that parent or caregiver.
Now, it's fascinating to try and understand why the caregiver is using the medical system in that way, and certainly many of those caregivers may be motivated by the same thing that drove Munchausen syndrome in adults, that is, they get their psychological kicks out of the kind of attention and focus that they receive from being the centre of attention in a healthcare setting. Now, that may be the motivation for many perpetrators, and that's why factitious disorder imposed on another is in the DSM-V as a psychological disorder in adults. And if you look at Valmai's literature review, much of it focuses on factitious disorder imposed on another, the psychological criteria that you use to diagnose that in an adult.
But I really want to remind you that it is primarily a diagnosis made in a child, but this is about the harm that a child is suffering. And there will be a subset of those adults, a large subset, perhaps, who are inspired by the desire – the benefits they get from being engaged in healthcare. But it's often much more complex than that, and in fact, there is no specific psychological profile that fits the adults in this case. So, one of the questions, of course, if you're working in healthcare is: where do you cross the line from the normal range of health-seeking behaviour to what becomes Medical Child Abuse?
And one way to conceive about this is that when you think about healthcare behaviour, there's a whole range from, on the left-hand side here, numbered as 1, people who will never go to the doctor, whether for themselves or for their children. And in children where parents never go to the doctor, some of those children will eventually suffer harm, and some of them will suffer neglect in medical care, and they'll come to Oranga Tamariki. And we already have an interagency guideline for that group of children.
And in some ways, you can consider Medical Child Abuse as at the far end of the spectrum on the right, where you have children who are now coming to harm, not because their parents are avoiding medical care, but because their parents are insisting on inappropriate and harmful medical care. And when does an anxious or hypochondriacal parent who takes their child to the doctor unnecessarily – when do they cross the line to a child who – a perpetrator or a parent who is causing Medical Child Abuse? And essentially, they cross the line, of course, when the child begins to suffer harm.
Now, the unfortunate problem with defining that line is that many children with real medical conditions will suffer a degree of harm from the investigations and the treatments that they receive. If you think of a child who is suffering from leukaemia, in order to save their life you have to put them through a series of processes, blood tests, painful procedures, chemotherapy, radiotherapy, their hair will fall out, they'll spend months in hospital, they'll drop out of school, they suffer enormous harm, but the benefit is that in the end their disease will be cured and they go on to live a normal life. The problem in Medical Child Abuse is that a child who does not have that condition is being subjected to the same harm, and the reason they're being subjected to that harm is because the parent is either lying about their symptoms or, in fact, causing them to have symptoms.
Now, it's very hard in 20 minutes or in a literature review to give you the flavour of what this is like, but I think it's important that you get a child's perspective on this. And this is a paper published in Paediatrics in 1997, which was co-written by a woman who had experienced Medical Child Abuse all her childhood. And when she grew up, she co-wrote this article with a psychiatrist, and they reviewed her notes from her childhood together.
Now, she spent many years in and out of orthopaedic wards with recurrent infection. What the doctors did not know was that, not only was her mother breaking her leg with a hammer, when she went home and her mother, who was a nurse, was providing her care, she would lift the plaster and contaminate the wounds with soil. So, she actually was repeatedly reinfecting her child so that her wounds never healed. Now, whatever the motivation of this mother was, the key issue here is that this was clear, and repeated, and persistent physical abuse. You don't need to know the motivation of the mother to know that she was causing her child harm.
And this was a case of mine that I – that I can mention here, of course, because it went to court. Some people in Auckland will be familiar with this case, and this involved two children. The older child spent four years going through the medical system in three different DHBs for several different conditions that she did not have. This included being dosed with anti-epileptic medication that she didn't need, being treated for juvenile rheumatoid arthritis that she did not have, undergoing many procedures, and surgeries, and investigations. And then finally when the woman had her next child, what only brought this all to an end was when she attempted to suffocate this child and videoed the child in their cyanotic apnoeic state. So, whatever her motivation was, it was very clear that both of these children suffered an enormous degree of harm.
And those of you who follow the news or TV programmes may well have heard of this story, of a woman who eventually, with the assistance of her boyfriend, murdered her own mother. And it was only after she went on trial for murder that it was revealed that her own mother had subjected her to Medical Child Abuse extensively throughout her childhood, such that at the time that she murdered her mother she was believed to be confined to a wheelchair and profoundly intellectually disabled. And, in fact, neither of those things were true. And one of the tragedies of this story is that the young woman herself, who you can see on the right as an adult, said that she felt freer in her prison where she was sentenced to ten years for her role in the murder of her mother -- she felt freer in prison than she had ever felt in her own home as a child.
Now, one of the reasons I mention that is because if you go to that webpage, you'll read this:
"Experts believe that Dee Dee's behaviour stemmed from the mental disorder Munchausen syndrome by proxy; because Dee Dee wanted to be a caretake, she feigned and induced illness in her daughter."
It's a very common mistake, because, of course, Roy Meadow used the word Munchausen syndrome by proxy not for the perpetrator, but for the child. And what -- my experience is that often in these cases over the years – often at the point of referral to Oranga Tamariki, people become obsessed with -- the question is, "Does the mother have Munchausen syndrome by proxy?" That's really not the question. And even if you use it in the terminology of the current DSM-V, "Does the mother have factitious disorder imposed on another?" again, that's really not the question.
Understanding the psychological motivations of the perpetrator are important if you're thinking long-term about safety and the possibilities for therapy and reunification. But they're not important in coming to a conclusion that a child has been harmed and that action needs to be taken to keep them safe. And the reason why I mention this is I've had people say to me in case conferences, "You've diagnosed Munchausen syndrome by proxy in the mother", and I've done no such thing.
So, "Steps to diagnosis for healthcare professionals". One of the key things, I think, about this condition is that it is a complex interaction between healthcare professionals, who are trained to believe parents and to always go looking for answers, and perpetrators who are manipulating that way of thinking to the harm of their child. Now, how am I going for time, Valmai?
VALMAI COPELAND: I think you have another ten minutes.
DR KELLY: Another ten minutes?
VALMAI COPELAND: Yeah.
DR KELLY: Okay. Cool. So, Danya Glaser, who's a child and adolescent psychiatrist in the UK, has suggested, I think, quite a helpful way forward for health professionals, and that is that we need to be much better at recognising and identifying what she calls "perplexing presentations". And if you go back to Roy Meadow's original article in 1977, one of his phrases has always stuck out for me.
"The problem seemed insoluble, and many of the facts did not make sense."
Now, one other aspect of my practice is, of course, physical child abuse in general, and I've long learned that one of the key issues in physical child abuse is, "Does this make sense?" And the same thing applies in children who are presenting with increasingly complex medical conditions that don't respond in the normal way to the normal treatments, that have symptoms that no-one ever seems to see except the mother, that don't behave in the way that those diseases should behave.
So, when a doctor begins to recognise that this problem is beginning not to make sense, you can't assume that it's Munchausen's or Medical Child Abuse, but you do have to take an extra degree of care to be sure that you understand what's happening. And one of those things is documenting in meticulous detail, and including taking steps which health professionals don't necessarily always take to corroborate the story. And the obvious example would be a child who reports – who presents with the mother reporting that the child is having seizures at school or at preschool. The obvious thing for a doctor to do is to be ringing the preschool, and talking to the teacher, and seeing if others have witnessed those seizures.
The other thing that many of these children tend to do is they – their parents often engage them with multiple healthcare providers, and it's important, if you're seeing these children, for a healthcare provider to get in touch with all those others. And if there's a point where you're seriously beginning to be concerned that this really isn't making sense, and you're worried that symptoms are being fabricated or induced, then all the health professionals involved meet together and reach a consensus about what is happening here. Do they still think this child has an underlying medical condition, or do they not?
And often when you get to that kind of meeting, in my experience, certainly, at Starship, you'll sit around a table with six other sub-specialist paediatricians, and none of them actually think this child has the condition that the mother is pushing them to diagnose, but none of them have quite been able to reach a threshold to express that concern to others. And often the professionals meeting was the first opportunity that finally everybody says, "Yes, we're all on the same page here", and then you have to identify a way forward.
And Glaser suggests a proposal something like this. And I've put it in green, orange and red, partly because it correlates with the traffic-light approach that's present in the Neglect of Medical Care Guideline. And ideally, going forward, I could see a situation where we had another schedule under the Memorandum of Understanding between police, DHBs and Oranga Tamariki, where we adopt this approach.
A traffic-light approach is, when you're in the green zone, the health professionals are in this situation where it's beginning not to make sense but there are still investigations to be done. There are some health professionals who believe this child still may have epilepsy, this child needs, perhaps, to have other EEGs, other investigations, which may not cause harm and need to be done. But there needs to be a coordinated plan; there needs to be someone taking a lead role and trying to ensure that this child doesn't go off to see multiple different professionals to ask the same question. And there needs to be a family meeting where there's an honest conversation with the parents about the diagnostic possibilities in terms of health conditions and the way forward.
Scenario 2 really is where you've run to the end of medical – medically justified investigations. You've still not got any concern that the child is necessarily coming to harm, but you believe they will come to harm if you carry on down this pathway of unnecessary investigation. So, there has to be a halt called to investigation, operations and surgery, and one needs to hold what some have called a "Good news" meeting with the family. "Here's the good news; your child does not have this condition, that condition, or the other condition. We need to focus now on a rehabilitation approach on getting your child back to school, on limiting the number of investigations, etc, etc". And in Roesler and Jenny's rehabilitation centre on Rhode Island, they were able to work successfully with a number of families if they could put a stop to this potentially harmful health-seeking behaviour and reorientate the family to a different way of dealing with the child's symptoms.
But if the family aren't responsive to that approach, or if it's too dangerous to do that approach because the child is already coming to harm, then you may have to go into a much more assertive scenario 3, which is a child-protection process. And when I say "too dangerous", I mean, one of the classically dangerous situations in Medical Child Abuse is particularly suffocation, where a mother who is suffocating her infant and is beginning to sense that the health professionals are becoming sceptical about the diagnosis may suffocate the child more vigorously, even in the hospital, in order to prove that the child has an underlying medical condition.
And if you're afraid that the outcome of involving Oranga Tamariki is going to be that something like that may happen, you obviously need to have your consultations with Oranga Tamariki about what you're going to do next before you confront the parents about your concern. So, whether it's acutely for a situation like that, or whether it's in a more planned fashion, for example, a child where the parents really will not accept the health professionals' conclusion that the child does not have these diseases and they're going to go off to other health professionals, they're going to go on and do further unnecessary tests and investigations, and those things are going to cause harm to the child, then the health professionals really need to reach a consensus that none of those conditions exist. They need to make that very clear in their documentation, and they need, obviously, to involve Oranga Tamariki.
Now, I've put here a Report of Concern, but, in fact, it's not simply a Report of Concern. And in many ways, this is analogous to the Neglect of Medical Care Guideline. Often by the time you get to the point of involving Oranga Tamariki, this history may have gone on for years. It's complex, it involves a whole lot of medical information, you'd have to just about get your head around an encyclopaedia of medical science to understand everything that this child may have experienced. So, it's really incumbent on the health professional to make sure they have got their head around all that – all those years of information, that they have synthesized them, they've made them comprehensible, they have made it clear, and they've reached a clear, combined decision that this child does not have any of those conditions.
If you get six professionals around a table, and one sub-specialist says, "I still think this child has condition X or condition Y", it becomes very difficult to take the matter forward. And I think when we – so, from my perspective, in a case like this, as for neglect, what we should be doing is, yes, making a Report of Concern, but often preceding it by a multiagency meeting with someone senior from the side involved, explaining the situation and thinking about the plan forward, and deciding, "Is a Report of Concern the appropriate thing to make?" If it is, "How – what kind of information do you require?"
And those meetings, I think, should be resulting in multiagency safety plans and very detailed multiagency plans for how we go forward, because one of the key characteristics of the mother, particularly in these cases, in my experience, is that they're very, very good at eliciting sympathy. They're very, very good at presenting themselves almost as saintly figures who will never leave their child's side. They're very, very good at splitting between professionals. You see it all the time within the health system where they will play off one health professional against another, and I've also seen it in interagency practice, where they will play off the health professional against the social worker. So, it's very important that we work really hard at good information sharing and good, tight planning.
Now, once, hopefully, we've secured the safety of the child, then assessment of the mental health of the perpetrator obviously is important, and that includes assessment for factitious disorder imposed on another. But I just want to reemphasise that understanding the psychological motivation of the perpetrator is not the primary driver here. There is no form of child abuse where you only diagnose it once you understand why the perpetrator did it. It's not true of child sexual abuse, it's not true for child physical abuse, and it's not true of Medical Child Abuse either.
So, in summary, I think we need to identify it. And in many ways, that's because of the way this condition interacts with the health system. It's the health professionals who have to – who have to identify it and be willing to stop it. If the family can't be diverted into a better way of interacting with the health system, then it is going to become a child-protection issue. And that's where Oranga Tamariki are profoundly important in terms of providing ongoing safety.
But we also need to think about repairing the damage. And I've dealt with a number of children over the years who have lived for years in an environment where they have been told that they are dreadfully, perhaps terminally sick, where they've been said that they're going to have to have parts of their bowel removed, or they're going to need to be in a wheelchair for life. One of our recent cases, by the time she was diagnosed, had a tracheostomy, which is a tube – a breathing tube into her throat, a gastrostomy, which is a feeding tube into her stomach, she was wheelchair bound, and she had had multiple, multiple neurosurgical procedures. Making this diagnosis and keeping her safe resulted in the transformation of her life, but nonetheless, she still had something like 13 years of this background that she has to process into the future.
So, that's just a very brief summary of the complexity of these issues from a paediatrician's perspective.
Silos and Systems
Sarah Williams, is a nurse consultant and educator at Starship Community Health. Sarah presented Silos and Systems: the relationship between primary schools and health services in New Zealand – the preliminary findIngs from her research which set out to answer the question: “What is the relationship between primary schools and health services in New Zealand, and how is this influenced”. Sarah’s talk is illustrated with examples from her years working in the community alongside school staff, tamariki and whānau.
Seminar video 2
SARAH WILLIAMS: I'd like to begin my presentation this morning by recounting the story of a child cared for during my time as a school nurse. PJ was an 8-year-old Samoan boy, who lived with his parents and five siblings. PJ was struggling with his learning at school. His behaviour, attendance and engagement was inconsistent and he would often appear very tired and lethargic.
PJ's name was on the school's Special Educational Needs Register. The teachers were concerned about his behaviour and slow academic progress. PJ was falling behind academically, and this was negatively impacting on peer relationships and his engagement in class and learning activities. Much investment had been made by the school in trying to support PJ. This included supportive education plans, classroom monitoring, teacher aide support and close involvement with PJ's family.
I first met PJ after I almost tripped over him as he lay asleep outside his classroom, having been excluded for his behaviour yet again. I became increasingly curious about PJ, concerned that his behaviour and tiredness didn't seem normal for an otherwise 8-year-old boy. I encouraged the school and family to refer PJ to me for a holistic review of his health and wellbeing, which they eventually agreed to do. Neither the school nor the family had any particular concerns about PJ's physical health.
I subsequently met with PJ and his mother, and on assessment I found PJ to be clinically obese, with enlarged tonsils but otherwise healthy. Mum described PJ as often very tired, usually going to bed after arriving home from school and sleeping for about four hours. Mum also reported night-time snoring.
I referred PJ to his family doctor for further investigation into possible obstructive sleep apnoea. His doctor arranged for a sleep study, and referrals to the paediatric respiratory, and ear, nose and throat teams for further review. Following this review PJ was diagnosed with severe narcolepsy. With ongoing treatment and support PJ showed an improvement in his health, behaviour and learning over time.
It was my experience of working with cases such as these that ignited my interest in the education/health relationship. I was particularly interested in how we, as health providers, could work more effectively with our education colleagues to optimise both learning and health outcomes for young people. Next slide please. Actually, stay on this slide for a moment because we went one ahead.
I entered into this research with my own beliefs and understandings that were based on my experience and knowledge as a provider of healthcare to children in schools. My experience had taught me that fostering positive interdisciplinary and professional interpersonal relationships with school staff was the key to successful collaboration. However, these relationships were often tenuous and fraught.
The study aimed to explore the experiences of school staff in working with health providers, and to understand more about the possible facilitators and barriers to this relationship. In addition, I looked for evidence on how health was considered by teachers when there was a learning need, and what health-related learning and development had been offered to the staff in the previous two years.
The research question was v "What is the relationship between primary schools and health services in New Zealand, and how is this influenced?" The justification for this study stems from the certainty that education and health are interdependent. Under the scope of international human rights obligations school-aged children have a right to both education and health, including health education. Education is a powerful precursor to health outcomes, and plays a significant role in supporting health behaviours. Conversely, poor health is a major factor in preventing or limiting learning opportunities, and as a consequence is a contributor to poor academic outcomes for many children and young people.
Despite the acknowledgement of this interdependence few countries mandate intersector collaboration. In addition, there are limited international studies that examine the day-to-day working relationship between school staff and health providers, and none are specific to the New Zealand context.
Conducting this study provided an opportunity to understand more about this working relationship. The study provides us with a unique stakeholder perspective, and valuable information that will inform how health service providers could work more effectively alongside schools for the long-term benefit of children and young people.
The provision of school health services has been in existence since the establishment of the New Zealand Medical Service in 1912. Services at this time were provided by doctors, with nurses coming into the fray in around 1921. Nursing services in schools are still provided today, although models vary across the regions.
Despite what we know about the benefits of early intervention, the focus of health service provision and resources in New Zealand schools has centred on secondary rather than primary schools. Based on my own practice experience and the findings drawn from this study, I believe this is a significant and concerning oversight.
In New Zealand inequities exist in both academic and health outcomes for our most disadvantaged children, with Māori and Pacific children over-represented in these statistics. Despite this, and the known interdependence of education and health, there is no formal requirement for the two sectors to work together. The devolved healthcare and education system in New Zealand has further complicated the ability of the two sectors to build sustainable relationships at a service level. What we do know from international studies is that positioning health services alongside schools not only increases the accessibility of such services to children, young people and their families, but also encourages educators and health workers to build more effective and beneficial partnerships.
So what were the study design and methods used? A qualitative multi-case study design was used informed by pragmatist philosophy. Cases were defined as state funded primary schools covering school years one to six. Three schools were selected from across the Auckland Region, drawing from different socio-economic communities. The schools were representative of deciles 1, 5 and 10.
Just a note to add here. The decile classification for schools is opposite to that of the New Zealand Deprivation Index; with decile 1 representing very disadvantaged, and decile 10 classified as most affluent.
Data was gathered primarily through individual interviews with 19 school staff across the three cases. Staff included teachers, principals, a school receptionist, two teacher aides and two special educational needs coordinators, commonly known as SENCOs, who both had a teaching background.
Additional data collection methods and tools used were: researcher observation of special educational needs meetings, school profile forms, pre-interview questionnaires, retrospective review of professional development offered to school staff. This qualitative research study focused solely on the perspectives of school staff.
The data from each case was analysed using a combination of approaches, and the findings were organised initially as three individual case reports. A cross case analysis on the collective findings of the three cases was undertaken and a final cross case report produced.
Before I go on to present my preliminary findings with you, I'd like to share, over the next couple of slides, a few of the quotes taken from the individual interviews that I conducted with school staff. These quotes convey some of the sentiments and perspectives shared with me and will give you a sense of some of the issues raised.
So what did I find? I presented my findings as assertions or statements drawn from the emergent themes, and which directly relate back to the research question. A total of ten significant findings emerged from the analysis of the cross case data. These are prioritised in order of dominance.
Assertion one. The relationship between education and health services is one of referral. This is about the act of making a referral being fundamental to schools' relationship with health services. This is how they elicited support from Health, referring out to bring in the assistance required. Completing referral, however, isn't always straightforward or efficient for school staff who referenced the often complex and lengthy processes involved, particularly in the accessing support for children with high health and disability needs.
Once a referral is sent to a health provider there is often a time delay before it is actioned. For example, the hearing and vision testers schedule their school visits on an annual basis. If the referral doesn't coincide with a pending visit -- or that visit has been and gone, a further referral to an outpatient clinic is required.
Time taken to complete a written referral and get a response from a health provider was an issue that echoed across the interview participants, particularly those in the two higher decile schools. They articulated concern that a delay had the potential to impact negatively on the child and their ability to engage in learning activity.
Assertion two. Visibility of health services in schools influences the relationship. This presents the visibility of health services in schools being directly relatable to the uptake of services. Somewhat unsurprisingly, high visibility correlates with a high uptake of services and overall improved relationships. Low visibility reduces uptake and can cause schools to believe they have to manage alone. Visibility not only relates to health services having an increased physical presence in schools, but also to be easily contactable and to schools being aware of the services that are available to them. The decile 10 school in this study was unaware that they were eligible to access the community nursing service.
Moving to assertion three. How school staff relate to health services is influenced by how they perceive their professional role from a functional perspective. As in any other workplace staff employed in schools usually have a particular focus to their role. For example, teachers assist students with their learning; school administration staff focus on admin tasks; and the school principal concentrates on the bigger operation picture. How each of these positions interface and work alongside health services is determined by what the staff member perceives their role to be in this relationship. This is shaped further by the expectation of peers and those in designated roles. One participant commented to me:
"The hardest thing in my position at the moment is that I'm a relief teacher. I don't think I can just go ahead and do a health referral or fill in a book, you know, I have to go through the classroom teacher."
Another, a teacher aide, said:
"I feel that it's not my responsibility, but if something is wrong with the child I go to the next person up from me. I'm just the teacher aide so I just do what I need to do."
Assertion four. As previously mentioned, accessing health support can be a difficult process for teachers and other staff working in schools. Many are either unaware of the services available to them, or are negatively impacted by the lengthy and sometimes complex processes of gaining access. Teachers are often required to collate additional data and supporting evidence before making a health referral, which is time consuming. Time is considered a precious resource by classroom teachers and most perceived what time they had was insufficient to pursue the health support needed for their students. This quote sums up this assertion well:
"By the time you've made your proper referral and they, the health provider, have decided they can or can't accept it, it's not really worth your time and effort."
Assertion five. This relates very specifically to the two higher decile primary schools in this study that receive less physical health service support. This decreased visibility prompted the participants in these schools to believe access to some services was not possible solely due to their higher decile ranking. The prolonged impact of reduced visibility on the two higher decile cases in this study has resulted in the schools believing they are expected to manage alone. This is not what they want to have to do but they perceive there is no other option. Tania, a Principal, offers this perception in the following quote:
"My understanding is that health services in schools are decile-based, and that if you're from a high decile you have limited or no access. As a decile 10, the culture here is that we manage ourselves because the Public Health Service isn't visible or available to us."
Assertion six relates to health services being regarded as completely separate to education by all three cases, including the decile 1 school where health services were more visible and accessible. The two sectors work in silo: there is no obligatory formal interaction between them, although opportunities do exist through inter-professional meetings to meet and collaborate; however, health professionals were not always invited or present at these meetings. Informal opportunities for health professionals to integrate with staff are afforded through a presence in the staffroom during lunch or tea breaks. This presence was valued by school staff. Philosophically, not all teachers appreciated that there is a causal link between students' health and their learning, and as a result did not prioritise students' health as a matter of course in their day-to-day work.
Assertion seven. Teachers having an awareness and understanding of the inter-relatedness of education and health strengthens the working relationship between them. Participants who had more years of classroom teaching experience drew on this and were able to articulate the benefits of working together with Health more readily. Participants reflected that more education and training on health-related barriers to learning, at both an under and post graduate level, would be beneficial to them. One participant made this comment:
"I think the more that everyone is aware of the mutual relationship between health and education, then we'll all be on the same page. It makes me think about our training. What did we learn at university about health impacts on learning? When I went through, we got absolutely nothing; it was all education, education, education."
Relating to assertion eight, all of the participants in this study talked about their experience of working with a nurse in the school setting; this was unprompted. Most concede that health services in schools were represented in the form of a nurse, with some reference to other visiting health services and providers such as hearing and vision, dental and social work.
Nursing services were consistently at the forefront of discussion across the cases, even in the cases where nursing was not visible as a service to them. Participants considered nurses as a trusted, effective and appropriate workforce to have working alongside them, and they valued their expertise. However, personal attributes and ways of working played a role in this relationship. A grumpy nurse was not considered likeable, nor one who interrupted teaching time without respect for the teacher or student.
Assertion nine. All three cases in this study had chosen to utilise school funds on employing a special education needs coordinator, or SENCO, whose role it is to ensure the coordination of support and resources for learners with special educational needs. SENCOs are frequently seen as the interface between the school and outside support services, including Health.
When a student is identified with a health issue, it is usual for the classroom teacher to refer this to the SENCO or another designated person in the school to pursue it. On the whole, this filtering of access to support was welcomed by the teachers who are busy and lacked time; however, most verbalised wanting to be kept involved and to have direct feedback. Not being able to talk directly to a health provider at the point of referral meant that the opportunity to give nuanced information about the child was lost. Similarly, not receiving feedback on the outcome of the referral was frustrating to teaching staff. One participant commented:
"I'd like the opportunity for a bit more input. Sometimes it's taken away from us and often there is no feedback at all and no one will share the information."
One teacher spoke about an experience she had of a child who was taken out of her classroom by the SENCO for an hour every week for a whole term, and she didn't know why:
"I didn't know here she went but she went for an hour. When I eventually asked someone I was told she was seeing her counsellor. That was news to me. It's not about my ego, it's about the child. I need to know that the child is okay. I need to make sure I'm making her day as normal and stable as I can. I don't want to say the wrong thing. I just need feedback on how I should be supporting her, or if I needed to be aware of anything."
The final assertion, number ten, relates to school staff's perceptions of their role in supporting the health and wellbeing of their students. When asked directly what responsibility the interview participants thought they had in supporting the health and wellbeing of their students, their answers lay on a spectrum. The responses ranged from no responsibility to high responsibility. Their perceptions seemed to align with how they interpreted the concept of health and wellbeing, and whether or not they held a holistic view of their professional role. Some participants perceived that being involved in supporting health and wellbeing was not and should not be their responsibility. In contrast, others shared the notion that they couldn't teach a child if health and wellbeing were an issue, and based on this they were willing to be involved. When participants spoke about an accident or injury occurring at school, their understanding of their role and responsibility was much clearer to them, and was consistent.
I will be proposing several recommendations based on findings of this study. These relate to four main areas: policy, practice, workforce development and research.
In regards to policy, these recommendations centre on the need for better intersectoral collaboration. My recommendation for policy development all links to the current lack of intersector collaboration between the education and health sectors in New Zealand. The current relationship is perceived as a "nice to do" rather than a "need to do". This sentiment is contrary to the evidence that clearly demonstrates the positive outcomes that can be achieved for children and young people through such collaboration.
Practice. Firstly, we know that sustainable and effective intersectoral collaboration is notoriously difficult; and even more so between two complex systems such as education and health. An effective way to support this would be to establish a separate intermediary entity whose focus is on bringing the two sectors together through planning, data sharing, coordination and management. Knowing what matters to each sector is vital to relationship building.
The second proposed practice recommendation is largely self-explanatory: to develop a model for health service delivery that can be applied across a range of school settings, is flexible, promotes visibility, and allows for a universal and targeted approach when needed, applying the principle of proportionate universalism.
In regards to leveraging of infrastructures, an example we have successfully trialled at Starship Community based on some early findings of this study, is assigning a nurse to work with the Community of Learning in a more affluent part of Auckland. A Community of Learning, or COL, is a collection of education providers in a geographical area who come together to share resources with the aim of helping learners reach their full potential.
In this scenario, the assigned nurse attends COL-level wellbeing and special education meetings, and works with the 12 individual schools to action referrals and support transitions when she is required to do so. This project has been very well received by all involved and has increased the visibility and profile of health services to these higher decile schools.
With increasing roles across many parts of Auckland, classroom space is limited. More dedicated healthcare spaces are needed, particularly in schools situated in lower socio-economic communities, to increase visibility and access to care. A pragmatic solution to this problem evolved as a result of my practice experiences and harnessing of an idea inspired by George Clarke's 'Amazing Spaces'. With the support of many, I designed a semi-permanent, relocatable, set-for-purpose clinic space for health providers to work out of in a primary school where space is an issue and the students had high health needs. This was a collaborative effort supported by the Starship Foundation, and involving the health, education and business sectors.
Our first unit was named The Whare Hauora and was launched in 2018. The space is owned by Health and housed by Education. The project was funded by Barfoot & Thompson through the Starship Foundation. A second unit opened at Point England Primary School in Glen Innes at the end of last year. This project is my passion and it has been so exciting to see it evolve. I have popped this idea in for you to see what could be achieved by having a vision, being committed, and working collaboratively across sectors.
My third set of proposed recommendations relates to workforce development. In many countries, school nursing is a specialised area of practice in both primary and secondary schools. This is not the case in New Zealand. Given the devolved nature of our schooling and health system, I believe investing in this area of nursing should be high priority to support collaborative working at a service level.
Relating to assertion eight, nursing services are valued by school staff. The second recommendation on this slide, and relating to assertion seven, which was about shared understandings of the interdependence of learning and health, teacher participants reported little undergraduate training and ongoing professional learning development around physical, behavioural, and mental health. They all unanimously indicated a need for more training to equip themselves better for their day-to-day teaching practice.
In regards to further research, I will be proposing the following:
(1) A study that explores how health professionals view their relationships with schools to provide a more holistic overview.
(2) Further research to better understand the perspectives of parents and children in accessing and utilising health services through and in schools.
(3) Research into teachers' expectations of their professional role in supporting the health and wellbeing of their students. This was an unexpected finding and one I believe warrants further study.
(4) And finally, exploration into models of intersectoral collaboration between education and health and their utility in a New Zealand context.
The limitations of this study. Each school or case had notable differences in culture, ethos, internal systems, and access to health services which influenced their relationship with health providers. The uniqueness of the cases must act to caution us when considering to what degree the findings of the individual case studies can be generalised across other primary schools in New Zealand.
Secondly, the case studies centred on the experiences of school staff working alongside health providers and did not seek health providers' perspectives. And, finally, it is important to acknowledge that this study was conducted in one geographical area of New Zealand, and may not be representative of other regions' schools.
To conclude, this study had helped highlight some of the system issues which impact schools' relationship with health services, including issues around siloing, visibility, professional roles and responsibilities, making referrals, shared understandings of interdependence, and time. The current way of working relies on the goodwill and effective interpersonal relationships between health service providers and school staff; but this is not satisfactory nor effective, nor sustainable. Continuing to rely on this way of working, with no formal requirement for the two sectors to work together, leaves the relationship vulnerable to breakdown thus impacting those who need it most.
This research has highlighted the need for educational and health providers to be supported to work more collaboratively within an established infrastructure, underpinned by legislation. However, a commitment from both parties to do things differently, plus a shared vision and mutually agreed goals, is imperative if this collaboration is to be successful.
Stepping back to my story of PJ at the start of this presentation. Why did I have to almost trip over him in the corridor outside his classroom before I was made aware of him and his issues? At the time, I was at the school almost every day, visible and available. This study has provided some insights into why this might have been so, and highlights the reason we need to consider and do things differently if we are to foster better intersectoral and (inaudible 30.52) understandings in relationship and, most importantly, optimise education and health outcomes for children and young people.
I would like to acknowledge the support I have received. Firstly, the schools and participants in this study who showed such willingness to be involved. Secondly, I'd like to thank my funders for their generous support: the Wilson Sweet Fellowship, Heather Forss, the A+ Trust, and AUT; and, finally, my original and subsequent supervisors, Dr Annette Dickenson, Dr Margaret Jones, Dr Leon Benade and Dr Jane Morgan from the Auckland University of Technology.
I would also like to thanks all those who have supported me professionally and personally to get to this point. Thank you for this opportunity to present my study to you this morning. I am hoping that there will be some of you who are willing to help me champion the need for change in this area; and if you are keen, I would love to hear from you. My details are on this slide.