Making Gudaga work: strategies to keep families connected to research

Brief report

Published in the HealthBulletin

Posted on:

26 October, 2015

Issue

Vol 15 No 4, October 2015 – December 2015

Introduction

The Macarthur region, on the south west outskirts of Sydney, is home to over 5,000 Aboriginal people. We make up 2.7% of the region’s population [1]. Each year over one hundred babies are born at the region’s main hospital, Campbelltown hospital. It is here that the Gudaga story begins.

Gudaga is a longitudinal birth cohort study that commenced in 2005. At that time, the aim of the study was to describe the health, development and service use of Aboriginal babies (0-12 months) born on the south west outskirts of Sydney in our local area, Macarthur. The study was set up because the local elders, mums and aunties were concerned about a number of things such as cot deaths and breastfeeding. Everyone knew there were a lot of deaths but no one knew exactly how many. The grans and aunties were also concerned that a lot of babies weren’t being breastfed but no one knew the reasons why. There were no data to back the hunches of the mothers and aunties which in turn meant it was difficult to get funding for additional services.

The original Gudaga Study has been in progress now for over nine years and most of the families who were originally recruited to the study are still involved. In addition, two other studies have grown out of the original Gudaga Study: the Gudaga Goes to School (GG2S) study which is describing the experiences of the Gudaga children as they transition to school as well as their experiences in kindy through to Year 2 (ie 5-9 years); and the Bulundidi Gudaga (BG) Study which is an evaluation of sustained nurse home visiting services for Aboriginal infants prenatally through to 2 years. Together these three studies make up the Gudaga Research Program.

We (Cheryl Anderson (CA) and Natasha West (NW)) are the Project Officers for all of these studies. Both of us are Aboriginal mums living in the Aboriginal community of south west Sydney. Our formal responsibility is to collect data from participating families but in reality, one of our main tasks is to keep those families engaged, and connected with, the study. We help mothers, carers and children feel part of the research. There are many people involved in these studies – representatives from the local Aboriginal Medical Service and the Local Health District, Gudaga researchers, other project officers and support staff. All of them work in different ways to support the building of relationships with study families. As the study’s Project Officers we have the most contact with the study families because our role in data collection.

We think that our story of the ways we engage with the Gudaga families might interest others working in the field of Aboriginal health research. There doesn’t seem to be much information available on effective strategies to engage Aboriginal families in research, particularly research that goes over time such as our studies. The aim of this paper is to identify the strategies we have found to be effective in keeping our families engaged and involved in the Gudaga Research Program.

Strategy one: Who we are

As we said, we are Aboriginal women living in the study area. Both of us have lived in the Macarthur area for most of our lives. My (CA) mum and gran also live in the area. They are both local elders and very well known. Our children go to local schools, play netball and footy on local teams and all our friends live nearby. Our gender, ethnicity and place of residence are key elements of our work. We couldn’t do what we do if we weren’t Aboriginal women connected to the local area.

We both live in the same community as Gudaga and BG mums; we shop in the same shopping centres and attend the same community events. This gives us lots of opportunities to have a quick chat with the mums at different times which helps to build the relationships. Doing our job would probably be really hard for someone who was not from the local Aboriginal community because they would not have these unofficial links with the families.

Strategy two: Be flexible

We are also both mums with children ranging in ages from 18 months to 14 years. We know all about being busy, juggling priorities and schedules like all working mothers. We know that life is also very busy for most of our mums, some of whom live quite unpredictable lives. We understand when a mum forgets to come into the hospital for an assessment or isn’t home when we go to visit her. We also know that many of our mums rely on public transport so getting themselves plus two or three children to the hospital can be a major undertaking.

Our role centres on communicating with the primary carer of the child in the study and usually this is the mother; building relationships with the mothers and visiting them every 6 months to collect survey data for the study. The work varies though and there is no ‘typical’ day. On any one day we might need to phone mothers to arrange a 6 monthly data collection appointment; ‘drop by’ their home to try to make personal contact if communication has been difficult; collect the survey study data and do data entry. Although we plan our work in advance, the plans tend to change because before the week is over we’ve had phone calls to change appointments or we go to the appointment and the mum has forgotten.

We have learnt that it is very important to be flexible, patient yet persistent when it comes to making times to see our mums. We try to be available when the mums are available. This may mean we visit or call them after normal working hours or over the weekend. We’ve even collected data over Christmas and the Easter breaks because for some working mums, this is the only time they have available. At times though, our flexibility has been put to the limit when we’ve had to chase mums nine or ten times to arrange a home visit. This is when we need a lot of patience.

We use a number of ways to make contact with our mothers. When making an appointment for a home visit or assessment we’ll start by making phone contact but it often isn’t as easy as that. If a quick phone call doesn’t work we’ll send a text then drive by their home when we are out and about doing home visits. If mum isn’t home when we drop by we’ll leave a calling card and follow that up with another call. We often know the mothers and aunties of our mothers and we’ll contact them if we just can’t find our participating mum. We regularly drop by our AMS on the days they are having playgroups or community kitchen and we’ll often find some of our mums attending those activities.

Strategy three: Be convenient

When the study first started and the babies were very young the mums were usually at home most of the time. At this time, we collected most of the data during regular six monthly home visits. Now that the children are older and many mums have gone back to work fewer and fewer mums are at home all day. Home visits have become trickier to do so we look for convenient places to meet up with our mums. We’ve done data collection in car parks, preschools, shopping centres, sports ovals, on the sidelines of netball courts and at community events. Some of the children go to the same after-school dance classes as our children so we sometimes sit outside the dance classroom and ask a mum the questions. We may meet up with a mum at a netball game on a Saturday morning.

Strategy four: Build trust

Over time, we have built strong rapport and trust between us and the families. This is something we have worked on by trying to ensure that, whenever possible, the mothers are seen by the same project officer. The mothers seem to like having regular contact with a person they feel they can trust and relate to however this isn’t always possible. If the project officer who regularly sees a particular mum isn’t able to do so, both of us will make a joint home visit to introduce the mum to the other research officer. We do this to help them feel comfortable with both of us and to show that the trust they have in one of us can be extended to the other.

Our work has shown us that some mothers occasionally need a person to talk to ‘in confidence’, someone who will really listen to them. Confidentiality is a vital dimension to our work and we take it very seriously. We have been able to build trust with participating families because they know we would never disclose what they tell us to others. We would never chat about a family to other families or our friends. It just isn’t right to do so.

Strategy five: Never judge

Sometimes we’ll visit a mum in her home and all she wants to do is just talk. Her priority that day isn’t answering the questions we have come to ask her because she has other things on her mind. The questions we ask take about 30-40 minutes to complete but some of our home visits can last an hour or two. Our mums often talk to us about some pretty major life issues they are facing. A lot of mothers feel they can talk to us about things that are not related directly to the research because they know we will not judge them. Some mums get a bit worried about their untidy house. We quickly reassure them and say “We’re not here to judge you on your house. We’re here to talk to you”. It’s important to have an open mind when you visit them in their homes, to see the bigger picture and not judge them on what’s happening that day.

Strategy six: Badge it right

Right from the start we have given our mothers and children small gifts as a token ‘thank you’ for their time and involvement. Often the gift has incorporated the study logo as a permanent reminder of who we are. We’ve given all sorts of gifts. When they were six months old, each baby received a very cute I’m a Gudaga baby t-shirt. Older children have received bright yellow Gudaga sunhats and I’m a Gudaga kid t-shirts. For the mums we’ve had special Gudaga and Bulundidi coffee mugs designed. These are a big hit with our families.

Having a logo has given us an identity within the community. The logo is embroided onto our work shirts which we wear every day. Everyone knows us by our brightly coloured shirts. We get spotted picking our children up from school or shopping on the way home from work. Mums see us in our shirts and stop for a chat. It is a fun way to stay connected.

Strategy seven: Feedback information on their child’s development

An important part of all three studies is gathering information on the development of each child. Children in the Gudaga Study receive a full health and development assessment when they are 1, 3, 4½ and 7 years of age. Children in the BG study are fully assessed at 18 months. Assessments results are provided to the parents along with recommendations for appropriate action/intervention if necessary. Many mothers greatly value this opportunity to have their child assessed by a paediatrician, research nurse and psychologist on a regular basis.

Over time, a number of children have been diagnosed with a range of health concerns such as poor hearing and eyesight. Others have had behavioural issues such as autism, Asperger’s Syndrome, ODD and ADHD diagnosed during these assessments. All of these children are referred on to relevant clinical and/or intervention services. For many children, these issues may not have been diagnosed at an early age and they would not have had the benefit of early intervention.

In the last month, two mums whose seven years olds were diagnosed with developmental concerns have told us that their children were now doing well as a result of the intervention they received. Another mother phoned last week to thank us for identifying her son’s poor vision. He now wears glasses and is able to read without getting headaches. She is the busy mum of seven children. She had no idea her son had a vision problem until it was picked up by our research nurse.

Strategy eight: Make the most of the “social” in social media

When Gudaga started in 2005 social media was not very common. A lot has changed over the past eight years and now it seems all our mums are connected to Facebook or some other form of social media. We’re making the most of this and now we connect with a lot of families electronically.

Using Facebook has been a great way to stay connected with our mums, particularly those who are hard to locate. We didn’t deliberately set out to use social media as a way to stay connected. It just happened. We found that Gudaga families were inviting us to connect with them on Facebook. We soon realised that this could be a way of staying in touch with our mums, particularly those who were difficult to get hold of over the phone.

Facebook is a very non-threatening way to make contact. It is just like having a chat. It is also very reliable. For many of our mothers, their home addresses, landline and mobile phone numbers change so often but their Facebook details remain the same regardless of where they are living. They can also pick up Facebook if they have to go back to country for a funeral or other family business.

Some of our mums simply don’t like the phone and won’t answer private phone numbers they don’t recognise. Facebook is ideal for these mums. It’s just another way to stay in contact.

We also use SMS texting a lot. We can make a time for a home visit or assessment by sending a quick text or if we turn up at a mum’s home and she isn’t there we can quickly text her to find out what’s happening.

Conclusion

Keeping mothers and children engaged in the project is an important part of our role. There would be no study data to collect, no data to analyse and no opportunity to learn about the health, development and wellbeing of urban Aboriginal children without their ongoing participation.

The mothers like to have someone who will listen to them with cultural understanding, respect and kindness. Keeping the mothers and children engaged in the Gudaga Study is beneficial for them at a personal level but the information that comes from the studies will be used to help the wider Aboriginal population across Australia.

Acknowledgements

We would like to acknowledge and thank the Gudaga families for their participation in the Gudaga Studies for without their continuing involvement, commitment and enthusiasm there just wouldn’t be Gudaga. We’d also like to thank Assoc/Prof Elizabeth Comino (lead Gudaga CI) and Rosslyn Eames-Brown for assisting us in the preparation of this paper.

Reference

Australian Bureau of Statistics (2006) Census of population and housing: Campbelltown, Camden and Wollondilly local government areas: Indigenous status by age. Canberra: Australian Bureau of Statistics, 2006.