Susanna TrnkaAssociate Professor of Social Anthropology

Department of AnthropologyThe University of Auckland

Domestic Experiments

How ‘Parent-Experts’ Reinterpret Medical Guidelines

  

PART OF LARGER COMPARATIVE STUDY

• 2011- • Comparison of government/ medical/ familial

responses in New Zealand & the Czech Republic, • Interviews with approx. 95-100 people per country

(primarily parents, young adults with asthma, medical professionals, and environmental activists, but also lawyers, teachers, and industry reps).

• NZ material: semi-structured, open-ended, face-to-face interviews, 30 minutes-two hrs., 33 parents (24 mothers/9 fathers), +16 young adults with asthma, 35 medical professionals (i.e. respiratory specialists, GPs, pediatric and respiratory nurses, etc.).

SELF-MANAGED CARE

• Since the late 1980s, New Zealand has been at the forefront of neoliberal healthcare reforms which have decentralized and privatized healthcare • Sociologist Nikolas Rose:

“complex of marketization, individualization and responsibilization of healthcare”, promoting pro-active patients

1. Recognizing/measuring symptoms

2. Accounting for them 3. Adjusting medication

or seeking help

OVERVIEW OF FINDINGS

• Self-positioning of mothers as “parent-experts” whose authority supersedes merely overseeing action plans • “Patient-expert” > “Parent-expert” • Care practices not only taken up by kinship

networks, but often arise out of familial-based experiments (i.e. domestic experiments), with the goal of “normal childhoods”- Creating a routine use of daily preventers- Situational, albeit routinized, use of emergency relievers

CHOICE & PARTNERSHIP … & COMPLIANCE?

Physicians’ “focus on self- management through educating and training patients [often] results in self-management being a medically defined and approved set of adherence practices, consistent with evidence-based asthma guidelines.” (Aroni et al. 2003: 14)

Aroni, R. A., et al., 2003. Asthma self-management: What do we really mean? Australian Journal of Primary Health 9 (2&3), 10-17.

GENDER AND CARE

Sally: “It pretty much has always fallen to me. … Like my husband will do stuff, like hear him coughing in the night and go and give him his Ventolin. But in terms of deciding the policy of what we do as opposed to the immediate treatment, that’s pretty much me.” Charlotte: “I always have to tell him how much they need... I tell him, ‘look, just give her two puffs through the spacer, or give her six puffs and break them down into three rounds.’ ... I’m with the kids all the time, so I know where they’re at.”

TAKING RESPONSIBILITY

Sally: “Adam was quite severe with it for a while, so the medical wheels did kind of spin into action … he [got] reactive treatment. They did actually …. take steps to make sure he did have an asthma management plan...”

“We don’t have an asthma specialist [anymore], we just go to the GP. And if I think about it, we don’t get anything pro-active from her–we have to go to her and then she will prescribe. But you know, he’s had it a long time now and I kind of feel like I know what I need from her. ..... If I was hopeless, then he could quite easily go a long time without getting treated, though I guess if he did have a severe attack, maybe they’d start again.”

BECOMING A 'PARENT-EXPERT'

Charlotte: “My kids aren’t the ones where you have a severe asthma attack and have to dial an ambulance. It’s all a slow, progressive [change in] their breathing. They start sucking in at the base of their neck ….and their breathing gets a bit more laboured, and laboured, and laboured.”

Georgia: “The thing with both of them is [that] they just go really quiet at the start of an attack - it’s not like they run up and say anything! So I have to really listen out for the wheezing - they will just be sitting quietly and wheezing. I also lift up their shirts, and... can see they’re trying to suck in air.”

DRAWING ON PERSONAL EXPERIENCE

Priya: “He would wheeze from time to time, but he never needed Ventolin. But this one time, he was really bad, so bad that I said, ‘he needs a nebulizer.’ Fortunately, because I’ve been through it, I knew what to ask for and what to do.”

Sangeeta: “It was non-stop coughing... you wait for four, five days and it doesn’t go [away] and you’re coughing non-stop. You’re awake, you can’t go to sleep because you’re just coughing, coughing, and then her breathing – I used to check her breathing. ... It’s horrific, I tell you, ….You feel so helpless. You feel like you’re feeling breathless, you actually do.”

BECOMING “HALF A DOCTOR”

Sally: “We’re so much more onto it now. I can look at him and think he’s gonna need this... and I bump up the Ventolin a lot sooner, before [there is an attack].”

Sangeeta: “I’ve told her doctors, ‘look, if she needs an antibiotic, she gets an antibiotic. I don’t want to wait!’ ... initially the GPs were not prescribing antibiotics... but the minute she’s got a fever, I know how bad it can get... I was half a doctor by then, because you know your child.”

…. “pushy” or “stroppy” mothers

CREATING ROUTINES

Charlotte: “You get repeats on your prescription, so you get a prescription for three and then three repeats, so then you get nine. It’s quite good, because I have one for me and one for Caitlin and one for Jamie so if I run out, it’s quite handy. And I’ve got four or five spacers. I’ve normally got one in the car this time of year, through the autumn and winter months, and I carry one on me at all times.”

“It’s at the point now where if they are a bit wheezy in the night, … I can give them the Ventolin in their sleep and they don’t actually wake up anymore.”

STRIVING FOR “NORMALITY”

Sally:“Well, he sort of does it every day, if I have noticed he’s been coughing. Then I put him on the Ventolin and the Flixotide straight away and I suppose I would tend to keep him on the Flixotide for a week or two.”

“Oh no, no, no, we don’t heat the house all winter or anything. He runs around in the rain, in the cold, like everyone else. He goes swimming whenever he wants to, even if it’s freezing. He does those sorts of things. But that’s because we can control it with Ventolin and Flixotide.”

RE-INTERPRETING DIAGNOSES

“currently having asthma”vs. “becoming asthmatic”

Geoff:“Just a wee puff” is ok.But using a daily preventer? “I never did. Because I just didn’t feel it was necessary to take medication every day for something that gave me a bit of problem quite infrequently.”

THE RESPONSIBLE CHILD

Jane: “I’m constantly dinging into her head that it has to be managed by you, not by me. I’m not up there with you in school. You have to take the responsibility. ....”

Charlotte: “By [the age of] three, Caitlin … just knew, she’d go to the [teachers], and say ‘look, I need it.’”

Sally: “But it’s not up to him to protect himself. We notice if he can’t breathe properly. He might get the Ventolin and bring it to us, you know, but he won’t be able to save his own life.”