Views
5 years ago

chapter 2 - National Federation of Voluntary Bodies

chapter 2 - National Federation of Voluntary Bodies

Informing Families

Informing Families Consultation and Research Report “…and its not just a sentence, every word is important because you are hanging on to everything they say and you will remember every word that they say, it sticks in your mind. They need to really plan their sentences and their words because this is going to stay with you for the rest of your life.” Parent, Informing Families Focus Groups 47

Informing Families Consultation and Research Report CHAPTER 4 CONSULTATIVE FOCUS GROUPS WITH PARENTS AND PROFESSIONALS 4.1 Methodology The findings of the Literature Review undertaken for the Informing Families project showed that there was a lack of comprehensive national research into current practice in Ireland for informing families that their child has a disability. It was therefore agreed to undertake seven focus groups with parents around the country to address this information gap. These seven focus groups were undertaken with parents of children with physical, sensory, and intellectual disabilities and autism spectrum disorders. Initial research on the project had also found that the range of disciplines providing the news to families and supporting them immediately thereafter was complex, with various professionals at experienced and training levels involved. In order to capture the experiences and concerns of professionals fifteen focus groups were undertaken, bringing the total number of focus groups to twenty two, as illustrated in Table 4.1, below. Table 4.1 - Background Statistics for Focus Groups Number of Parent Focus Groups 7 Number of Professional Focus Groups 15 Total number of Focus Groups 22 Number of Parent Participants 38 Number of Professional Participants 93 Total number of participants 131 Mean number of participants per group 5.95 Aims The intention when conducting the focus groups was twofold; firstly to address the information gap regarding current practice and secondly to initiate the process of consultation on best practice. The aims of the focus groups were: ● to gain a nationwide picture of current practice in how families in Ireland are told of their child’s disability, from both the perspectives of parents and professionals ● to gather recommendations from parents and professionals for future best practice in how families are informed, including aspects that are currently working well, and areas that need improvement ● to explore options for the effective dissemination of best practice guidelines to the wide range of disciplines currently involved in disclosing the initial news to families or in supporting them immediately after the diagnosis has been given ● to gather qualitative data providing an insight into the impact of the disclosure process on parents and professionals Selection of Participants – Parents The Informing Families Project worked with six representative service providers in the physical, sensory and intellectual disability sectors to invite parents of children with disabilities between the ages of 3 and 6 to participate. In respect of six of the seven focus groups, staff members from Early Service Teams were contacted to liaise with parents who would be potential participants. Staff members were asked to make contact with parents using the following criteria: ● Groups to be run in urban and rural areas across the country ● With parents of children between the ages of 3 and 6 years ● With both parents being invited to encourage input from the perspective of fathers and mothers ● The children represented to have a diversity of diagnoses, some with syndromes identifiable at or before birth; those who received an evolving diagnosis, and those still seeking diagnosis ● Groups ideally to contain between 8 and 10 participants Four of the focus groups took place in conjunction with intellectual disability service providers, one with a physical disability service provider, and one jointly with two sensory disability service providers. The groups took place in rural and urban locations spread throughout the country. 48

Best Practice Guidelines - National Federation of Voluntary Bodies
presentation - National Federation of Voluntary Bodies
here - National Federation of Voluntary Bodies
here - National Federation of Voluntary Bodies
here - National Federation of Voluntary Bodies
Next Steps Project - National Federation of Voluntary Bodies
Open hearts - National Federation of Voluntary Bodies
Annual Report 2011 - National Federation of Voluntary Bodies
friendships and taboos - National Federation of Voluntary Bodies
Annual Report 2008 - National Federation of Voluntary Bodies
Annual Report 2005 - National Federation of Voluntary Bodies
Questions re final document - National Federation of Voluntary Bodies
Toward Having a Good Life - National Federation of Voluntary Bodies
annual report 2006 annual report 2006 - National Federation of ...
Achieve More 2 - National Council for Voluntary Organisations
Fish friers Review - Mar / Apr 2012 - Issue 2 - National Federation of ...
Programme - National Federation of Voluntary Bodies
Programme - National Federation of Voluntary Bodies
here - National Federation of Voluntary Bodies
here - National Federation of Voluntary Bodies
here - National Federation of Voluntary Bodies
Programme FINAL - National Federation of Voluntary Bodies
Spring 2012 - National Federation of Voluntary Bodies
NEEDS AND ABILITIES - National Federation of Voluntary Bodies
Information document - National Federation of Voluntary Bodies
co-researcher handbook - National Federation of Voluntary Bodies
People Connecting - National Federation of Voluntary Bodies
Reading list - National Federation of Voluntary Bodies
plain english Cover2 - National Federation of Voluntary Bodies
Annual Report 2010 - National Federation of Voluntary Bodies