The highs and lows of qualitative research

I sat in her lounge room on a cold Auckland day in 2007. During our in-depth interview this mother cradled her sick baby while the other three played in a nearby room. They lived in a small two bedroom flat and their son was ill and needed weekly visits to the hospital. Having no car, this journey took them one hour each way by public transport with, three children under seven. No longer was this a bunch of variables in a survey, it was a person’s life and how all these things worked together to make on-time immunisation very difficult.

The interview was part of a qualitative study that seemed elegantly simply. We would recruit 20 parents in three cities who faced economic hardship or social exclusion and whose children were not fully immunised. Then we would find out why.

It had started with a 2006 conversation with a public health practitioner. We both agreed this research was needed. Already, there had sprung up an entire industry of research off the back of the MMR vaccine scare delving into vaccine refusal. But there were another group not immunising on time or at all who were largely ignored. They were poorer, larger and/or single parent families and I suspect many in public health just assumed they knew what was going on. Very few studies had actually asked the families. We wanted to get their story, and their suggestions for what would make timely immunisation easier. We might confirm, unsettle or completely usurp our assumptions about these families. Indeed, part of the fun of qualitative research is being surprised.

The research journey is like a mountain hike at first requiring a trudge through the property of others before embarking on the peaks. There are many gates, many gate-keepers and many paddocks with landowners who require your trust: funding bodies, ethics committees, recruitment sites, journal reviewers and territorial disciplines.

This qualitative project had many gates. First there were the stringent privacy laws making recruitment via the Australian Childhood Immunisation Register impossible; there was an ethics committee who had issues with “statistical analysis” of this qualitative project; there was tiny budget; and the families themselves who were not seen in the typical recruitment settings. We overcame some of these recruitment issues with our first recruitment site, a public health unit, but then swine flu hit and they were swamped. Plan B was to recruit from a population health survey which had capacity to contact these parents. That gate was shut. Plan C involved recruiting through local community playgroups and required a new set of collaborators, a new ethics application and a new set of hurdles.

We ended up interviewing about 45 women in three cities: Sydney, Auckland and Leeds. The women we interviewed were generous with their time, their stories and ideas on how the problem would be solved for them. They became the experts. The mum in Auckland suggested an immunisation service at the hospital, removing the requirement for yet another health appointment on top of an already overcrowded schedule. Other mums living in very difficult circumstances had similarly helpful suggestions.

What was clear was that these mothers supported immunisation and wanted to protect their children. The apathy tag heaped upon them was unfair. In many cases, they faced their own gates and fences which seriously impeded a path they were keen to take. They intended to get their children fully vaccinated but domestic violence, mental illness, housing instability, transport difficulties, and bad experiences with health care services all acted as barriers.

Two days after learning of the failure of recruitment Plan B, I received an email. It was from a from a senior government officer about a large in-depth interview study we did on implementation of their policy. It was written to our small research team.

“The report is great. I must admit to some surprise at how informative and useful the research method has been. I thought we might get some grizzling from the “troops”, but nothing terribly useful. Instead, the report has managed to draw out the concerns of those at the front line and other levels, make sense of them, contextualise them within the whole effort, and make useful recommendations. Fantastic.”*

This is one of the joys of qualitative research – getting to show people unfamiliar with this method just what it can deliver. Far from a series of anecdotes, qualitative research has the capacity to systematically and rigorously provide insights that no other research method can. It helps us ask the “why” questions and can offer a rich understanding of just what is going on:

Why are only one third of pregnant women having a flu vaccine?

What influences people’s perception of cancer risk?

Why do certain groups of women not have pap tests?

What is it like to live with a child with chronic kidney disease?

Qualitative research takes us beyond the t tests and the logistic regression. There is no doubt these quantitative methods play an essential role and it was the surveys that led us to questions about disadvantaged families and immunisation. But qualitative research also gives context and humanity to our research. It would take a lot of locked gates to stop me on this hard but rewarding journey.

*Reported with permission.

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Why the rise in vaccine objectors?

Vaccine objector rates are rising in Australia. In 1999 they were 0.23% and by September 2014 they were 1.79%. This is nearly an eightfold increase in relative terms and a 1.56% increase in absolute terms. Vaccine objector rates are based on those who formally register their objection using this form. The form must be signed by an immunisation provider or doctor and the parent and submitted to the Department of Human Services. It is required by parents who are not fully vaccinating their child (i.e., not vaccinating at all or partially vaccinating or delaying vaccination) to continue to receive certain government payments, childcare rebate (if they are eligible) and entry to childcare in some states.

Vaccine objector rates have risen - slightly (note the y-axis only goes to 5%)

Vaccine objector rates have risen – slightly (note the y-axis only goes to 5%)

There has been a lot of concern expressed in the mass media about this rise in vaccine objectors. The spotlight burnt brightly once vaccination rates first became really public in April 2013 when the National Health Performance Authority released regional level data. People were naturally worried about what this might represent. Societies can usually withstand a small handful of vaccine objectors but it doesn’t take much of an increase to tip us over into outbreaks. The most stark example was when the UK’s MMR scare led parents who would usually fully vaccinate, to delay or decline MMR vaccine, leaving them with a measles epidemic.

Is this rise in objector rates because diseases like polio and diphtheria are going from memory, ironically with the success of vaccines? Has the internet’s capacity to rapidly deliver misinformation to parents created a rising tide of fear and misapprehension? Or are we seeing a shift in parenting styles – the ‘professionalized mother’ who spends time and resources deciding what her child needs but in that process sees vaccines as just a technology for individual consumption, as this study found?

The problem is that we don’t really know why vaccine objector rates have risen. There has been no corresponding decline in coverage rates. Then there is this mysterious group of children who are not registered as objectors but have no vaccines recorded on the Australian Childhood Immunisation Register. They were estimated to be 3% of children in 2013.

Nationally, the proportion of children with no vaccines recorded has reduced to 2.31% at the same time there was a slight uptick in registered objectors. This suggests that at least some of the parents who were ‘silent’ (non registering) objectors have shown their hand. A recent study of this group in WA helps shed light on who they are. It found that 28% were unregistered vaccine objectors. Also, in 44% the family had moved from overseas and the child’s previous immunisation history had not been added to the Australian Childhood Immunisation Register. An important caveat with this study, is that the researchers were only able to speak to 29% of the 834 they aimed for. However, the overall picture is that ‘no vaccines recorded’ is a mix of children who are truly not vaccinated at all and about half who are partially vaccinated but they don’t make it to the register.

The recent reduction in ‘no vaccines recorded’ and a corresponding increase in registered vaccine objection makes sense. In July 2012, the federal government linked Family Tax Benefit part A to completed vaccination of children (described in more detail here). This payment is up to $2100 per child paid to the approximately 73% of families who were eligible. It used to be linked to the Maternity Immunisation Allowance which was much smaller. So by linking this larger payment more parents would be motivated to register an existing objection – they now had more to lose by continuing to not vaccinate. We have also seen a tightening up on childcare entry requirements in NSW meaning that full vaccination or registered objection is being more strictly enforced before children can enrol.

At what point will vaccination objector rates hit a ceiling? They were was 1.79% in September 2014. Will they rise to 2.5% or 3%? Because our immunisation rates remain stable, the objection rate is unlikely to rise much above 3% unless Australia gets a vaccine safety scare.

It is not certain whether the rise in official vaccine objectors is only about people who were always objectors now registering. The best way to tell would be to track attitudes over time and include a more direct question. But this is not happening at present. I am working with researchers who have the expertise to develop and deploy a good quality survey but this needs funding like any other quality research endeavour. It is an important investment. The UK reaped the benefits of such a survey at the height of the MMR vaccine scare when they were able to track mother’s attitudes to MMR vaccine and predict accurately ahead of time when coverage would decline. Meanwhile, we will have to keep guessing what is happening to vaccine sentiment in Australia.

As we point out in this recent article, vaccine hesitancy is a growing concern. Countries all over the world see groups of parents who partially vaccinate or do not vaccinate their children at all out of choice. Much more needs to be done to see if hesitancy is growing, what drives it, and what governments can do about it. Vaccine refusal is the tip of the ice-berg. Many parents fully vaccinate but are still quite hesitant. What might tip them over?

A vaccine would never be unleashed on a population without data on the disease itself using good diagnostic tests and surveillance. Then the vaccine must be tested to ensure it is effective and safe. The same goes for vaccine hesitancy. It is not enough to assume hesitancy is rising. It needs to be measured with decent indicators and over time in populations of parents. Governments also need solutions that are well tested so they are effective and don’t cause unintended harms. This can only happen with a strong evidence base. We demand it for vaccines. We should also demand it for the solutions to vaccine hesitancy.

COI: I am involved in a number of research funding applications to develop ways to assess and address vaccine hesitancy.

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A tribute to my father

Screenshot 2014-03-06 22.27.25

A year ago today, I was sitting at my desk preparing for a huge Thursday and Friday when I got a text message from my stepmother Rose, “Dad in hosp emergency fell on carpet 4am bad headache being checked. Will keep you informed. X r” I slumped physically. This could only mean a bleed on the brain. For Dad, that was incredibly serious. He had chronic myeloid leukaemia (CML) and he bled very easily.

Clotting is something we take for granted. In Dad, it did not work at all well. A simple scratch would take an uncomfortably long time to stop bleeding. Cleaning his teeth could set off gum bleeding. A bleeding nose was worrying. His body leaked in this sinister way and it was unsettling. For dental work, Dad would need a platelet transfusion the day before. Surgery was out of the question and meant he had to endure painful arthritic knees that were long overdue for replacement. His leukaemia led to chronic tiredness, which made Dad even quieter than he usually was.

Dad had been on expensive treatment that took weeks to obtain. It was not an overnight cure for his atypical form of CML but it had made some difference. In that month he had been able to walk around Dove Lake in Tasmania and survive a fall that gave him a big graze. He had renewed energy and the night before his bedroom fall, had had a lovely night out with friends, almost back to his jovial self.

But sometimes death comes from the most simple of activities. And it did for Dad. A faint in the bedroom set off a catastrophic bleed to his brain that no intervention could stop. His subdural haematoma was bilateral and they made the considered decision to not operate due to his bleeding risk, hoping it would abate. By 6pm when I arrived he was in the emergency department awaiting transfer to neurosurgical intensive care. But in retrospect, I see that at that time his level of consciousness was on a rapid downhill slide.

I see that evening as a series of events: He shields his eyes from the light and dry reaches, I look for a buzzer to call somebody but can’t find it, a nurse finally arrives to give Dad morphine for the headache, Dad crashes, “Dad, wake up, wake up Dad”. The Narcan fails. “He’ll need to go to resus” says the doctor urgently. They unlock the bed wheels but the decoupling of monitors and releasing of bed breaks is stalled and chaotic.

There is an undignified rush to the resuscitation bay where staff to patient ratios have increased eightfold, we are ushered into a waiting room, the head of ED arrives and screws up his face as he tells us of Dad’s fixed pupils. I fall apart. A kind volunteer offers me and Rose a cup of tea. The neurosurgical registrar seeks our urgent consent to operate, we mention his living will and desire for quality of life, the registrar gives us a fixed stare. I feel abandoned to this decision and wish he had been taught about shared decision making. Now intubated, we kiss him goodbye.

Leaving, we notice another patient in the cubicle next to Dad’s. Lying flat on his back, his face is the colour of marble and he looks terrible but  no staff are attending him. Quickly we realise it’s a mannequin. Dad would’ve laughed uproariously.

Hours later, Dad returns from surgery where they tried to address the haemorrhage. His head is shaved and sutured like something out of a science fiction movie. We update family and get a few hours of sleep.

Rose and I arrive back in ICU the next morning. Dad remains deeply unconscious. When they organise a family conference with the social worker, two junior doctors, his nurse and the head intensivist, you know it’s about turning off life support. I learn later this is called the ‘black hat brigade’. With these sombre companions, we search the brand new ICU complex for a quiet room.

When I studied doctor –patient communication during my PhD, there were entire chapters in the Medical Library on how to deliver bad news. The head of intensive care did it well. He was straight and didn’t muck around. “I’m afraid we’ve reach the point of no return”. His compassion, his body language, what he said – everything made it easier. His life support would be turned off and he would die. But when? There are siblings overseas. In the end, he guided us in putting Dad first and giving him a death with dignity – to leave some time to say goodbye but to not draw things out.

Screenshot 2014-03-06 21.53.49So the next five hours was spent quietly with him. We mulled in the room, holding his hand, kissing his temple, being there. I was in constant contact by phone with my four siblings in Paris, Hong Kong, Brisbane and Melbourne. I held the phone to Dad’s ear as each of them said their last goodbye.

They turned off Dad’s ventilator at 4.30pm and he left us fairly quickly. His beautiful voice uttered its last groan as he exhaled one final breath.

It was the voice that had sung to me as a child “I see the moon and the moon sees thee, shine on the one I love”, or “Happy Birthday dear Julie” each morning of my March birthday. He was gone and I felt a strong sense that he wasn’t there anymore and it was time to leave.

His funeral was a joyous one, a celebration of his life with all five of us kids singing Neil Young’s Old Man and many tributes read. The crematorium chapel was packed.

At the funeral, I conveyed a few small memories that seemed to capture him well. His hand tremor that made us (and him) glad that he wasn’t a surgeon. He was a superb driver, and I always admired the way he would deftly edge in between cars to change lanes – all grace and calm competence. He had a cheeky sense of humour and especially loved telling the Wide Mouthed Frog joke, fingers stretching his mouth across to play the frog. He was quiet but loved just being around people – us kids, his 12 grandchildren, his many friends. He was a superb host and after a few wines was loquacious and fun.

Dad and my son take a spin in a teacup in May 2004.

Dad and my son take a spin in a teacup in May 2004.

He was also wise and pragmatic. He and mum divorced in 1975 but in the process, felt that the lawyers were trying to drive a wedge between them, so they fired them. They remained friends until his death. As branch manager of a paper merchant company, he described his management style as “benevolent autocracy”.

He was also extremely principled. He had been heavily involved in a rotary club which automatically appointed the local primary school’s principal to its board. When a new female principal was appointed, she was unable to serve on the board because at the time Rotary was for men only. Dad resigned from Rotary in protest and never returned. He was a gentleman, always leaping to his feet when a woman walked into the room and always opening doors. He also had a bite and could be pretty tough with you, although mellowed in his later years.

He was generous and humble. In his retirement, he volunteered for Meals on Wheels for many years, driving round with an esky of soup and hot meals in the boot, getting to know all the homebound and lonely people in the area. Then each week he would call the bingo at the Exodus Foundation and fondly regale stories of the colourful characters there. When he left Exodus he did not want his departure marked in any way, his modesty preferring to avoid fanfare.

Dad went at age 77 years. It was too early and seemed unfair. Many of my friends and colleagues are also losing their parents, and for some 77 is still a generous lifespan. It’s still hard to believe he is gone and, one year after his death, it seems fitting that I pay tribute to him.


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MMR, autism and Facebook


From time to time I am asked to comment on vaccine safety issues on Facebook. Today somebody had shared an article entitled “Courts Quietly Confirm MMR Vaccine Causes Autism

Here is my contribution which I am sharing because might help others in a similar position.

Bottom line – the MMR vaccine is safe and does not cause autism.

We all want to do the best for our kids. Protecting them from measles mumps and rubella is important. Measles can cause pneumonia, brain inflammation and sometimes even death. There is an outbreak in Australian right now.

Class actions in the US and UK have found against a link between vaccines and autism. Autism is a serious problem and the cause is not known but it does run in families and affects boys more.

The theory that vaccines cause autism has been studied by independent experts all over the world. The Rolls Royce review is here

Parents wanting a user friendly information might find the MMR decision aid helpful. Sample page linked below: 

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Are Australia’s immunisation rates really falling?

Our childhood immunisation rates have been climbing. Between April 2012 and March 2013 COAG reported an overall increase in Aboriginal and Torres Strait Islander children, children in certain low coverage regions, and four year olds. The report showed an increase in 25 of the 30 subgroups across all states and territories and five where there were slight reductions. It also reported on vaccine leakage or wastage – a story in itself but not discussed here.

I have put the COAG report figures into some graphs below. It gives  a snapshot of the main findings. I also discuss what can be done in the subgroups where immunisation rates are lower compared with other groups.

Aboriginal and Torres Strait Islander children

The good news is that immunisation rates in Aboriginal and Torres Strait Islander children have mostly increased. Three different age groups in each state or territory were reported. Of 24 groups, 21 had increased, with the largest increase among four year olds in South Australia jumping from just 67.1% to 85.7% – an increase of 18.6%. Just three of the 24 groups had reduced vaccination rates and these were Victoria (down by 1.5%) and WA (down by 2.2%) for the two year olds and Tasmania for the 12 months olds (down by 0.9%).

The following graph shows the overall coverage changes from baseline in this period with red arrows where coverage dropped.


Four year olds

There has been an impressive increase in coverage for four year old children. This is probably related to the previous government’s decision to link receipt of Family Tax Benefit Part A with on-time immunisation. Queensland remained worryingly low and it is not clear why this is the case.

Screen Shot 2013-10-13 at 1.21.16 AM

Low coverage areas

Some states or territories have named certain regions within them as ‘low coverage’ areas. For the 12-15 month old age group, this included NSW, WA and Tasmania.

Screen Shot 2013-10-13 at 1.24.04 AM

NSW reported a 0.3% reduction, a finding that the Daily Telegraph picked up on this week with the headline “COAG Reform Council Shows Vaccination Rates Fall Further In Some Areas“.  Immunisation rates do jump around slightly, but to me this newspaper missed the overall story in their pursuit of a more dramatic angle.

The idea that Australia’s immunisation rates are falling generally has been propagated widely in Australia this year in the media. But it is simply wrong, as seen in the graph below produced by the National Centre for Immunisation Research and Surveillance. Our national coverage is stable and has in fact increased in the four year old age group nationally. It seems irresponsible to propagate this idea of falling national coverage and shows an implicit disregard for the evidence. It has also spurred newspaper editors, professionals and politicians to seek quick and poorly thought out policy solutions.


While vaccination rates are not declining nationally, averages can mask significant variations in regions and sub-groups. Mostly where rates are lower, it’s about timeliness. A four year old may have had all her baby vaccines but if she is more than three months late four year old vaccines, she will be in that group counted as not fully immunised. Reminders and recalls that help prompt parents when a vaccine is due or overdue, can certainly increase vaccination rates. NSW has produced an app that does this. But parents who tend not to vaccinate on time also tend not to opt-in for such things. For them, Australia could invite all parents postnatally to be enrolled into an SMS reminder system linked to the Australian Childhood Immunisation Register.

Helping motivated parents to access timely vaccination can be done with the right strategies. But parents and whole communities who are less motivated to vaccinate present a much bigger challenge. For many years we have put them in the ‘too hard basket’ and for years, the rates of vaccine refusal in such communities have stagnated. But with lower coverage, they are more vulnerable to disease outbreaks, it is time to ‘brave the discontent’.  Our research group is now starting a series of studies that will build a situational analysis of such communities. By working with a range of partners, we hope to develop some promising approaches that respectfully help parents and communities to make the best quality choices about vaccination.


The figure above shows how parents who decline vaccination and register their conscientious objection cluster in certain regions of Australia.

Source: NCIRS

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In defence of bureaucrats

The public often maligns bureaucrats. They are said to be obsessed with procedure, dull, lazy, erecting barriers to innovation, even corrupt. When it became clear that the conservative Coalition would win government in Australia, Rupert Murdoch put the boot in with this Tweet, “Aust election public sick of public sector workers and phony welfare scroungers sucking life out of economy.”

Literature is also replete with bureaucrat bashing, often very amusing. In Hitchhikers Guide to the Galaxy, Arthur Dent seeks to find out why his house is set for demolition that day without his prior knowledge. He encounters Mr L Prosser, who is “40, flabby and fat and works for the local council”. Prosser insists that the demolition plans had been available in the local planning office for the last nine months. Prosser is unrepentant when Arthur points out that they were “on display in the bottom of a locked filing cabinet stuck in a disused lavatory with a sign on the door saying Beware of the Leopard”.

In Harry Potter and the Goblet of Fire, Harry and co encounter the officious and smug Percy Weasley from the Department of International Magical Cooperation who must finish a report to standardize cauldron thickness.

Bureaucrats are the people we love to complain about. Mostly the complaints go unchallenged. The bureaucrat cannot phone the local radio station or write to a local paper to defend their work nor the complexities they deal with behind the scenes. Their jobs usually require them to maintain a dignified silence. 

While most of us will feel the impact when bureaucracy functions poorly, we are usually blissfully ignorant of the benefits when it functions well – even just reasonably well.

Refreshingly, this week Croakey published an article by Professor Tarun Weeramanthri who heads up the Public Health and Clinical Services Division in the Department of Health in Western Australia. Professor Weeramanthri talks about the backroom staff who perform important duties, from laboratory staff right through to those who work on legislation and finance.

When we go to hospital or a GP clinic, a doctor, nurse, midwife or allied health professional will care for us, help birth our babies, dress our wounds, pin and plate our bones, help our rehabilitation. We see and feel their cures and well up with gratitude at their competence and care.

But consider the absence of illness enjoyed because of people in the backroom.

  • The middle-aged adults who don’t get cancer, heart disease or emphysema in 2050 because a bureaucrat implemented an effective policy to reduce youth smoking now.
  • The women who are, or will be, free of pre-cancerous cervical lesions because a team of bureaucrats successfully coordinated the delivery of an HPV vaccination program in their schools when they were adolescents.
  • The children and adults who avoid dentist visits for fillings and extractions because a bureaucrat negotiated with a hesitant council to agree to fluoridate their drinking water supply.

The bureaucrat mostly does these things silently and without fanfare. Being a bureaucrat doesn’t have much dash about it. It’s about serving the public usually in banal, ordinary and unseen ways. But the work is important for a healthy and well functioning society and even if bureaucrats can’t defend themselves, those of us who get a glimpse of their work occasionally will.


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Vaccination and the art of gentle persuasion

Vaccination and the art of gentle persuasion

This blog has been re-posted from The Conversation. In it, I summarise a framework for communicating with parents about vaccination that a team of us worked on and published here. It is a conceptual piece and we are now in the process of turning the framework into a toolkit that we will pilot then maybe trial in the future. It’s a bit like building a smartphone. It needs to be road tested and adapted until the toolkit is user-friendly, convenient, adaptable and effective. So we are starting a program of research with step one being a qualitative study with GPs, nurses and paediatricians looking into their experiences, challenges, and needs when facing the sometimes challenging task of reassuring parents about vaccination.

I’m working with a multidisciplinary group with expertise in cognitive science, immunisation, general practice, paediatrics, complex interventions and communication. They include Hal Willaby and Lyndal Trevena from the University of Sydney, Margie Danchin from the Murdock Children’s Research Institute in Melbourne and in the UK Francine Cheater from University of East Anglia, Cath Jackson from University of York, Nick Sevdalis from Imperial College London, Paul Kinnersley from Cardiff University and Helen Bedford from University College London.

Source: flickr

Source: flickr

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September 17, 2013 · 11:25 pm