‘FAMILY VOICES’: Life in Ireland for Families of People with Intellectual Disability— Working as co-researchers on a National Study

by Jean Spain, Parent Co-researcher, Director of Frontline and Inclusion Ireland & Darren Chadwick, Marie Curie Research Fellow

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I am writing this article with Dr Darren Chadwick who is Marie Curie Fellow in the NIID and the lead researcher on this collaborative project, and one of my co-researchers. I first got involved with the National Institute for Intellectual Disability (NIID) in 2007 when it was directed by Professor Patricia O’Brien. I was asked to join the advisory group which was set up by the NIID, as it had just started a new research programme. The aim is to do research with people with intellectual disability and family carers who live in Ireland. The chair of the advisory group is Professor Roy McConkey.

The research was funded by the Marie Curie Transfer of Knowledge Programme, which is so named because the researchers come from outside Ireland to learn more about this country and to share their knowledge of their own country here. The advisory group consists of people with intellectually disability, family carers, services providers and university lecturers and research staff. The role of the advisory group is to give advice to the research team and to ensure the voice of people with intellectual disability and their families is listened to and acted upon.

This was the first time I, as a parent, got an opportunity to work and have a voice on a group such as this, working with people with similar goals—to make life better for people with disabilities through research and to work together to bring about positive change.

The main project I am involved in (along with three other parents) is research about the lives and concerns of family carers in Ireland. Hasheem Mannan joined NIID as a Marie Curie Research Fellow; he was appointed as researcher for a national family survey. The first part of the project was to send out a letter to parents explaining about the National Survey. It was entitled ‘Life experiences of families of people with intellectual disabilities’. The letters asked families if they would be willing to take part in the survey by attending small discussion groups (focus groups) in locations around Ireland. Based on the themes that emerged from those discussions, a national survey would be developed.

The main questions for the focus group were: ‘What is life like for families of people with disabilities in Ireland?’, and ‘How can we make support services for families better?’ The first focus groups were held in Dublin, and after putting our views forward as parents at that meeting, we were then trained to co-facilitate focus groups to be held in different locations all over Ireland. Seventy family members (mothers, fathers and siblings) gave their views about what life was like for family carers in Ireland. One of the things that made these meetings so successful was that parents set up support group for themselves afterwards. Indeed, what we found was that parents whose children attended the same service had never met one another or had the opportunity to get to meet one another before taking part in these focus groups.

In the Spring of 2009 Dr Hasheem Mannan moved on to another research position in Trinitu College, and we were joined by Dr Darren Chadwick and Dr Edurne Garcia Iriarte to carry on the work on the survey.

Based on the findings of the focus groups, four parents (Frieda Finlay, Anne Lawlor, Seamus Greene and I) were asked to work with Darren, Edurne and Roy to put together the questions for the national survey. We wanted to have the views of a larger number of families, so we could be sure that we were accurately representing the views of families from all across Ireland. At first we had over 200 hundred questions which we thought should be in the survey, but after a lot of hard work we got the number of questions down to 69. We didn’t want the survey to be so long that people would find it too difficult to complete.

This was a first for us parents, to be involved at this stage of a survey. As someone said at the time, it is usual for us to be ticking boxes for questions we had nothing to do with, it’s not usual for us to be making the decisions as to what questions should be asked in the first place.

Over 500 families completed the survey and with 70 families taking part in the focus groups, this made a sizeable total group involved in the study.
It was a huge job to analyse the findings from the two parts of the national study. Looking at the data we collected, we identified family’s strengths and concerns.

The main findings were set out under seven main themes:
1. Family challenges across the lifespan
This included problems getting early intervention, worries about transitions from child to adult services, difficulties families had ‘letting go’, managing challenging behaviour and health problems, and worries about the future care of their family member.

2. Availability of information
Families talked about not getting enough information about disability or about what services, supports and entitlements were available to them.

3. Relationship and communications with services and professionals
Many families were happy with their relationships with services, but some talked about not being respected, listened to, consulted or understood by services.

4. Being adequately and appropriately supported
A lot of families were happy with the support and services they got. Some, however, reported not having enough services, having a limited choice of services, or being worried about losing services.

5. Having to advocate and fight (for services and entitlements)
This was one of the biggest concerns families had. Almost all of the families had had to fight to get services, supports and funding for their family. Families found this exhausting, frustrating, stressful and difficult—especially when they were trying to provide support.

6. Attitudes towards disability and family
Some said attitudes had improved and reported very positive experiences. Some had experienced negative attitudes to the family and beliefs about disability, including disinterest, fear, embarrassment and treating people in a patronising way.

7. Policy, government support and funding
People talked about the government failing to implement policies to improve the lives of people with disabilities and the bureaucracy that made getting funding and services difficult.

As a parent who has had over 24 years’ experience of fighting for services for my daughter, it was sad to see that the same issues were still a major worry for families.

A preliminary report was launched in July 2010, with support from NUI Galway and the NIID, Trinity College Dublin. One of the things we realised was that we hadn’t heard what services thought about working with families. So it was decided to send out initial invitations to services providers and those working in services for people with intellectual disabilities. Among those who attended were CEOs, managers, clinical and social care workers and frontline staff (indeed, anybody who worked in the services and had an interest in the survey).

Roy McConkey gave the introductions at the launch; Darren Chadwick gave the background and methods we used to collect the data, and the findings were presented by us parents, Frieda, Anne, Seamus and me. This was a new experience for me, telling people the findings and the feelings of the families who took part in the survey.

Focus groups were held in which all those attending from services got the opportunity to give their opinion on the survey. The focus groups questions were:

1. What are your experiences of working with families?

2. How can the service you work in address the concerns the families have raised in our study?

3. How do you think families and services could work better together?

4. How can we take the findings from this study forward so that the concerns of families can be addressed at local and at a national level?

These focus groups appeared to be a great success, as there was full and frank discussion on the issues raised by families in the survey.

My hope is that the staff who participated will take back the findings in the report to their services and take on board what families are saying.

We are now in the process of transcribing the focus group discussions and will analyse them so we can report our findings at a future date and offer suggestions about how services and families can work better together. We are also planning to tell all stakeholders, people with intellectual disabilities, families, service staff, policy makers etc. about the findings from all three studies at a future date and to plan how these stakeholders can take ownership of these findings and use them to advocate for positive change.

Although we have not finalised the results from survey, I have enjoyed being involved in all the stages of ‘Family Voices’. Being included as a co-researcher is a great feeling and I hope that in some way our work may make a difference to the lives of families of people with intellectual disabilities in Ireland.

You can find and download a pdf of the preliminary ‘Family Voices’ report from the NIID website.

We would like to thank the families who took part in this study and the organisations who helped us to contact them: Inclusion Ireland, The National Federation of Voluntary Bodies, The National Parents & Siblings Alliance, Special Needs Active Parents Ireland, Special Needs Parents Association, 22Q11 and Down Syndrome Ireland.

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