Dr Nonie Harris & Beth Tinning James Cook University

1. Dr Nonie Harris & Beth TinningJames Cook University HEARING PARENTS’ VOICES: LINKING PARENTS, COMMUNITIES AND CHILD CARE POLICY

2. Hearing Parents’ Voices: Linking Parents, Communities and Child Care Policy Dr Nonie Harris and Ms Beth Tinning James Cook University

3. Research Aim • The intention of this research project is to contribute to the early childhood education and care policy dialogue at this time of policy opportunity. • The objective of this research project is to qualitatively explore, from the perspective of parents and carers who are searching for and using long day care, the impact of the rapidly expanding and changing for-profit child care sector on their opportunities to choose quality child care.

4. Research Methodology • Feminist perspective • Qualitative methodology • In-depth interviews • Grounded theory analysis • 50 respondents in Cairns, Darwin and Mackay • 20 respondents from Townsville 2007 pilot study

6. Beggars Can’t be Choosers - Locating Child Care in a Large Regional City • In the end I was in a position where you had to use the strategy of putting her name down in several places to see what came up, and keep my bloody fingers crossed that I got somewhere that was good (Cairns parent) • We moved to Darwin and I just rang around to see where we could fit in … beggars can’t be choosers … we are fortunate to get a place. (Darwin parent) • In Cairns, you have to take what you can get really. I imagine in a bigger city there would be more options. For me, I’m thinking there would be more chance of finding services that aren’t so white, although at least up here, because of the population groups, there is more chance that there will be Indigenous workers. (Cairns parent)

7. Compromising on Quality • When we arrived in Darwin … I started to think OK I will need to find care in Darwin, I did not really know anyone up here … I only really found one centre that had any positions … so I had to take what ever was available at the time because we both worked and we really didn’t have any other options. It (the centre) was OK – it probably would not have been my first choice, it was not ideal … so if I had had other options available I probably would have chosen a different alternative. (Darwin parent)

8. A Matter of ‘Luck’ • It was a fluke … I got my name down at a lot of centres and found the waiting list was usually six, 12 or even 18 months at that time, and then they opened a brand new centre. So it was really lucky that I got in there before it was even built… I got my name on the list and I was one of the first in the door, so it was really lucky. (Cairns parent) • I have been lucky I think, in the sense that I did get a place for Billy and that was probably - they said that a few people had left because of the uncertainty of the ABC… (Darwin parent).

9. Looking for Happiness - The Link Between Child Care Choice and Quality • Low ratio of staff to children • A balance of play and learning activities • Culturally appropriate and sensitive environment • Quality staff child relationship • Enthusiastic and energetic staff • A warm friendly environment that was well resourced • A safe environment • Emphasis on children’s happiness to attend • Positive relationship between the parent and the centre director • Outdoor play area – touching the trees and the grass • Welcoming and interested staff

10. Some were Happy and Some were not • The first child care centre, I was very happy with it. They had some fabulous workers in there that, you know their enthusiasm, their energy was right there. I mean I’m wanting child care to add on to what I don’t provide, given that I’m putting a kid in care for a long time. Um, so that was, it was fairly important that I felt there you know, there was a lot of happiness. (Mackay parent) • I’m not real comfortable there and I’m sure part of it is that we are the only black family. I’m hoping we won’t stay there for much longer, but at the moment the boys have to wait. They’re not so unhappy, they seem OK, you know kids, they’re adaptable … But you don’t want your kids to have to adapt … I hate the thought that they are going somewhere second rate, but what I want doesn’t exist and the closest thing to it has a six month waiting list. (Cairns parent) • … looking back the first one that you know she was only at for couple of months um probably met my expectations by about 70% … The second one, everyday I said to myself get her out of here, get her out of here now. (Mackay parent)

11. Child Care Quality and Market Forces • I think it only works if the women have a choice – if you have got a couple of different child care centres to choose from then of course you would pick the best one and that one would prosper and the other one would not… But in reality there is not a market, so women have to choose whatever they can up here … there is not a choice. (Darwin parent)

12. A Sign of the Times - The Current Child Care Landscape • … but the rise in the number of profit, yeah I just, I’m just trying to be realistic, that’s just a sign of the times. I mean look at ABC, who didn’t think to themselves I should snatch one of them up, they’ll be going cheap, we could make a real, you know, killing here. Um, you forget that your customers are newborn you know, um but I guess that’s just being realistic … Soyou’d have to be an idiot not to step up and say well I’ll open a child care centre and I’ll charge whatever I want and people will pay it. Especially in a town like Mackay, maybe not so much at the moment, but I mean it is a boomtown and people will literally pay what it takes… (Mackay parent)

13. Dollar Signs and Cowboys • I just think big dollar signs written all over them… It’s actually something that I expected in that they were running a business and it wasn’t charity. You opt to go back to work or you opt to use child care for whatever reason, well this is the world you live in. These people are here to make money, they have staff to support, they’ve got a centre to run, that’s life you know, and any other business would do it … I guess that’s just reality. (Mackay parent) • If you open a child care centre, you can do whatever the hell you want… they are for profit, they’re on their own, they make their own rules… I just thought to myself you’re just a bunch of cowboys, you just do what you want when you want, um and yeah no-one sort of pulls anybody into line on a lot of it… (Mackay parent)

14. I think child care is a problem all over the country and especially for families that need something different from the norm. Because they have to offer whatever the most people want, so they can get lots of kids to make their money… It doesn’t make it fair though for those of us who aren’t in the majority. (Cairns parent)

15. Ask the Community What they Want • that finding quality child care will be difficult and complicated • the quality of care will be less than ideal • where you live impacts your access to quality care • getting a quality child care environment is a matter of luck • that child care will be culturally inappropriate • that child care is a business • running a business means prioritising profits • there is a lack of information about child care options such as community-based and for-profit child care services

16. there is a lack of clarity about who is monitoring quality - after all anyone can open a child care centre • for-profit centres make their own rules • the ownership of centres can change and that there will be constant change of this nature • the for-profit delivery model is legitimate, because government funds and supports this model of delivery • flexible responsive services will not be provided unless they make money – i.e. the profitable model of provision is what we have and parents have to accept it “Well I’d be saying ‘till I’m blue in the face - to ask the community what they want … find out what is important.” (Cairns parent)

17. Dr Kate BurnsFlinders University PSYCHOSOCIAL SCREENING IN A GYNAECOLOGICAL ONCOLOGY SERVICE IN ADELAIDE

18. Psychosocial screening in a gynaecological oncology service in Adelaide Catherine M Burns, PhD Senior Research Fellow, School of Medicine, Flinders University, South Australia Cecily Dollman BSW, Team Leader, Cancer Services, Social Work Department, Royal Adelaide Hospital Kylie Smith BSW Local Social Worker, Cancer Services, Social Work Department, Royal Adelaide Hospital

19. Social Justice & Health • A Healthier Future for all Australians • Report of theNational Health & Hospitals Reform Commission. June 2009 • Key Points of Governance • People and family-centred • Equity • Shared responsibility • Promoting wellness & Strengthening prevention • Comprehensiveness • Value for Money

20. Population Growth & Social JusticeAustralia’s Population – 1951 - 2030

21. Australian Population Distribution1967-2027

22. Social Justice and Cancer Care WHO 2003 ReportCancer trends to 2010 • 31% increase Northern Europe • 51% in North America Australia AIHW Report 2008 • INCIDENCE 100,000 new cases of cancer in 2005, projected to grow by over 3,000 each year. • QLD 18,483 new cases in 2008. • PREVALENCE x 8 = close to one million living with cancer. • Around 150,00 people living with cancer in QLD • 38,000 deaths from cancer in Australia in 2005. Place of Death • Aged trends(Gomes & Higginson 06) absolute increase in deaths will commence in 2012 and last until 2050 • AIHW (09) first national linkage of hospital and residential aged data found 25% of people died within 4 months of entering a RACF Place of Care(Agar M et al 08) • Two conversations – “place of care is not a euphemism for death”

23. Barriers to Treatment: Role of Screening • Social Justice • Place of care and place of death • Threat of increased barriers to treatment & care • Ageing population and increases in absolute numbers of deaths “expansion should occur in terms of home-based services and improvements at the interface between inpatient and communitycare, to facilitate a move towards home”…. • Role of screening • Identification of the vulnerable. • A scientific methodology needed • clinical audits to undertaken over time • GUARANTEE commitment to equity is achieved. • Where to start? • Cancer Psychosocial Care • social work practice model for extension to other areas of health

24. QIP Initiative at RAHScreening for Distress • Oncology Day Centre – 2007 • Funding Provided by Prof Dorothy Keefe • Convenience sample only used 60% scored high • This successful preliminary work provided a platform, to implement a systematic screening approach • Then sought to respond to highly vulnerable population – women with gynaecological cancers

25. Method of Recruitment • Obtained ethics approval • Project undertaken over 5 weeks 7 October – 7 November 2008 • The were no exclusions defined in the population • Recruitment procedure • Nursing staff integral to the initiative • Women asked to complete a survey form twice – before and after their medical appointment • This sought to control for pre-consult distress • Women with high distress scores were referred same day to clinic social worker for follow-up and assessment

26. Extreme Distress Please circle the number (0-10) that best describes how much distress (mental or physical pain or suffering) you have been experiencing in the past week, including today. No Distress

27. Marital status Single 18.9 Married 52.8 Divorced/separate 17.3 Widowed 8.7 Employment status(n=107) Employed 30.8 Home duties 18.7 Retired/pension 45.8 Unemployed/student 4.7 Place of Residence Metropolitan 66.9 Rural 33.1 Religion None 44.1 Anglican 15.7 Catholic 11.8 Uniting 7.1 Other 21.3 Income support 30.7 Occupation Professional 10.3 Semi-prof/adv clerical 8.4 Clerical 12.1 Home duties 18.7 Retired 10.3 Pensioner 35.5 Unemployed/student 4.7 Characteristics Gynaecology Clinic Population

28. Characteristics Gynaecology Clinic PopulationMajor Diagnoses x Age

29. Treatment - modalities • Surgery 94.5 • Chemotherapy 35.4 • Radiotherapy 21.3 • Currently on treatment 37.0 • Recurrence 15.7 • Palliative 2.4

30. FINDINGS: Global Distress Score 0- 10Pre and post appointment

31. DT Distress ScoresPre & Post Scores P=<0.001

32. DT ScoresTime 1 & 2xClinical Features

33. DT ScoresTime 1 & 2XAge

34. Summary of Global findings • 24 % of patients report distress scores above the cut-off level after their medical consultation • Cross-tabulation of pre and post test scores confirms a dynamic factor operating • Those currently on treatment more likely to be distressed • Interestingly those with recurrent disease reported lower levels • Age is an important association in patients’ levels of distress • Younger women are likely to be much more distressed • Older women are more likely to have no distress at all

35. Specific Areas of ConcernPractical

36. Specific Areas of ConcernFamily

37. Specific Areas of ConcernEmotional

38. Specific Areas of ConcernSpiritual/Religious & Physical %

39. Specific Areas of Concerns Physical (cont’d) %

40. In Summary • Case ascertainment has essentially remained unchanged in most Australian hospitals for over 50 years • Drs & nurses identify people whom they think could do with a social work referral. • Simple screening is a first step towards professional responsibility for psychosocial care • Implemented as QI measure • Developing multidisciplinary responses appropriate to individual health setting • Clinical audit trail • Most importantly of all, it is a real attempt to guarantee that the most vulnerable people do not fall through the cracks • Finally, it provides important irrefutable data for energetic, strategic Directors of Social Work services to argue for increased service provision which will be needed within the next few years