Promoting inclusive research with families: A visit to the Peninsula Cerebra Research Unit in Exeter, UK

I had the opportunity to recently visit the Peninsula Cerebra Research Unit (PenCRU), which is based within the Peninsula Medical School, at the University of Exeter in the UK. PenCRU is funded by the charity Cerebra and focuses on Childhood Disability Research. Over the last five years PenCru has evolved the practice of involving families in all stages of their research. This ensures that research is relevant to improving the health and wellbeing of disabled children and their families. It is also worth noting that in the UK it is mandatory to involve patients and members of the public in research when applying for government sponsored funding streams. The aim of my visit to PenCRU was to learn about the practice of involvement and how partnerships were formed between researchers and the local families.

As an early career research fellow working in the area of childhood disability, and having a passion for engaging with families, the concept of involvement was not necessarily something new. Our Program always ensures parents and carers have the opportunity to sit on advisory groups, and that their perspectives are captured within the research design if the research we do concerns them. However, after spending time at PenCRU and talking with the parents that they worked with, the concept of involvement demonstrated a more profound meaning to me.

PenCru have established a Family Faculty, where families (most often, mothers) who have an interest in being involved in research will participate in various activities with researchers. A lot of work was done in the early stages to encourage families to get involved, such as holding forums, websites, newsletters and launch events. To date there is over 200 families in the Family Faculty database. There is no formal structure to this involvement; parents can join in at any stage of the research process whether this is identifying important issues that research needs to address, actually formulating research questions or prioritising those questions for funding applications. Families can assist in the design of research, writing of summaries and grants and also finding sources of funding through support services and charities they know of. Members of the Family Faculty are consulted on all research ideas or queries that come to PenCru to see if there is sufficient interest to explore the topic and shape into a research question that is meaningful to families.

I managed to spend a good amount of time with four of the parents on the Family Faculty who felt empowered in their roles with researchers and that this opportunity enabled them to have a voice and share their life experiences in an informed way. They enjoyed having the choice to be involved in projects that interested them the most and attending meetings when it was convenient for them in their caring role. This really felt like a partnership that worked respectfully and fruitfully for both the parents and the researchers.

My own take away message from PenCRU was to think of involvement as a core research activity and one that is flexible, it is not something that can be allotted a particular research stage. To simply start by communicating widely to families about the work that we do, and to encourage families to share their views will be good starting point.

The Peninsula Cerebra Research Unit is part of the Peninsula Collaboration for Leadership in Applied Health Research and Care (PenCLAHRC). PenCLAHRC is a collaboration of Universities and NHS organisations in the South West of England which aims to deliver high-quality health research that influences medical practice, ensuring that research addresses issues that are relevant to patients and carers and results in beneficial new treatments and services. 

Read more at http://www.pencru.org/aboutus/#GCial3kPGMX4JIEc.99

Written by: Kim-Michelle Gilson

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It’s time we all listen to Indi

With the seat of Indi still too close to call it may well be that the role of children in same-sex relationships may have had some small bearing on the outcome. Sophie Mirabella, a Liberal Party frontbencher who headed into the election with a comfortable 9 point lead, has found herself in the fight of her life. Her competition, Cathy McGowan, is a popular local independent enjoying significant support in an election that generally saw a considerable swing to the Liberal Party. Now I am not a political pundit, and I am sure there are many factors at play that have led to this surprising result, but I can not look past the role that same-sex families may have played in the final days of the campaign.

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Photo from: http://www.cathymcgowan.com.au/

On the Wednesday before the election The Age reported on the distribution of offensive pamphlets in the seat of Indi. Let me make it clear at the outset, there is no evidence that these pamphlets were either the responsibility of, or supported by, the Liberal Party. The pamphlets portrayed young children with quotes such as, “I need my mum and dad.” They went on to urge voters to distribute their vote such that Cathy McGowan, among others, be preferenced last. The reason given in the pamphlet was that Ms McGowan is in favour of marriage equality. Sophie Mirabella has consistently and repeatedly emphasised her position that marriage should only be between a man and a woman and, as reported in The Age, she believes that marriage was “developed for the creation and raising of children.”

It is reassuring to think that perhaps our research is starting to gain significant traction in the community. Where previously these scare tactics might have boosted the conservative vote it seems that we might be moving into an era where the population as a whole understand that there are many valid and healthy ways to raise children. This evolution in public opinion is so important. As our research evolves we are seeing the negative impact that opinions such as those expressed in the unwelcome pamphlets can have on children with same-sex attracted parents. And while these children are in general developing well, a message that may finally be cutting through, the final remnants of negative outcomes could be taking their last gasps as local Australians embrace same-sex parent families, even if some politicians are slow to reflect this.

The coming days will bring a final result in Indi, but whoever triumphs one thing is certain. At least in this small corner of our country attempts to discriminate against, and vilify, same-sex attracted parents seem to have failed. It gives me hope that with the aid of our ongoing work same-sex parent families have a bright future. Perhaps Mr Abbott will realise this and allow a conscience vote the next time marriage equality comes up in parliament.

Come on Prime Minister, listen to Indi.

By Dr Simon R Crouch
Lead Investigator, The Australian Study of Child Health in Same-Sex Families
http://www.achess.org.au

Is marriage equality really that important this election? Just ask Russia.

Although the majority of Australians are in favour of marriage equality many would agree that it is not a high priority issue and that other aspects of policy should take centre stage. But when I vote tomorrow I will be certain that any candidates I mark with the number 1 are on the record as supporting same-sex marriage. OK, so I am perhaps more personally engaged in the debate than most, but it is important that we all contribute to the continued progress of social issues in our country.

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Just take a look at Russia. Recently this European country took a step backwards in terms of human rights when it passed legislation earlier this year that essentially banned any positive discussion of homosexuality in public. There has been a small but significant reaction to this step with some calling for a boycott of the Winter Olympics next year, and high profile celebrities deciding to ‘come out’ and voice their dissent.

 But today reports are emerging that Russian lawmakers have drafted a bill that would see children being removed from parents based on a “nontraditional sexual orientation.” This outdated view, which suggests children need to be protected from exposure to homosexuality, has been lifted right out of the 1970s. Almost forty years ago some researchers tried to suggest that children with homosexual parents will themselves grow up with the same deviant sexuality and that this would be a very dangerous outcome. In fact, what forty years of research has shown is that kids with same-sex attracted parents are doing just fine, thank you very much. And the only thing that has any significant impact on their health and wellbeing is just the type of discrimination that Russian politicians are subjecting same-sex parent families to.

 Australia is at a crossroads. Our research is strengthening previous findings that kids with same-sex attracted parents are doing really well, but that they are adversely impacted by the perceived discrimination they feel when hearing the negative rhetoric that surrounds issues such as marriage equality. This is what drives my work. The ability to provide the all important, balanced evidence that policy makers can draw upon to inform essential debates in our society. Our work on child health in same-sex parent families is still in its infancy but already it has received attention around the globe as more and more countries seek to move on marriage equality. But equally we, the voters, need to understand the evidence as we go to the polls and decide who will lead our country in the coming years.

 This is why we need to move forward as a nation. This is not an issue that wears particular political colours – there are advocates and opponents on all sides. But for the sake of our children pay attention to where your first preference sits on the issue tomorrow. There are children in Russia with an uncertain future – let’s make sure we secure ours.