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chapter 2 - National Federation of Voluntary Bodies

chapter 2 - National Federation of Voluntary Bodies

Informing Families

Informing Families Consultation and Research Report The survey questionnaire for professionals mirrored the questions in the Parent Questionnaire in order to provide a comparison of experience. It contained additional questions to ascertain the support and training needs identified by professionals. Parent Questionnaire - Ethical Approval At each stage of the design of the questionnaire, the approval of the Informing Families Steering Committee was secured. Ethical approval for the Questionnaire Survey was secured from St. Michael’s House Research Ethics Committee, and from the Provincial Ethics Committee of St. John of God Hospitaller Services. Piloting Four pilot studies of the Informing Families Questionnaire for Parents were carried out: a) Intellectual Disability - Group feedback session on questionnaire with families in a Dublin-based service provider. (The families first completed the questionnaire on an individual basis). b) Intellectual Disability – Postal pilot of questionnaire through ten families receiving services in a regional agency. c) Physical Disability – Postal pilot of questionnaire through ten families receiving services with a physical disability service provider. d) Sensory Disability – Postal pilot of questionnaire through ten families receiving services from a sensory disability service provider. Based on feedback from these pilot studies, changes were made in the Announcement Letter (which preceded the questionnaire by one week), the Information Letter (which accompanied the questionnaire) and the Questionnaire itself. 14 Feedback related largely to the simplification, spacing, or clarification of question text. No families indicated that the questionnaire was inappropriate or that any of the questions caused offence. Many indicated that filling out the questionnaire was an emotional process but that it was worthwhile if change can be effected as a result. The questionnaire was typeset and professionally printed to ensure ease of reading. One family made telephone contact with their nominated service provider to request a second questionnaire so that both the mother and father could capture their individual experiences. As a result a note was added to the Information Letter indicating that the questionnaire could be photocopied, additional pages added by the families, or that they could make contact directly with the Project Co-ordinator to request a second copy, should they wish. Selection of Participants - Parent Questionnaire The sampling frame for the Parent Questionnaire was broken into two separate populations; children with intellectual disabilities, and children with physical and sensory disabilities. It was necessary to use two separate means in order to access the most representative samples available nationally in both of these areas. Parent Questionnaire - Intellectual Disability The National Intellectual Disability Database (NIDD) is a set of information that outlines the specialised health services currently used or needed by people with intellectual disability in the Republic of Ireland. The database informs the regional and national planning of these services by providing information on trends in demographics, current service use and future service need. The NIDD was established in 1995 and has in excess of 25,000 registrations. The database is managed by the Health Research Board (HRB) on behalf of the Department of Health and Children. (HRB, 2007 - website www.hrb.ie) The NIDD was used by the Informing Families Project as the sampling frame for the survey of parents of children with intellectual disabilities. The NIDD, whilst acknowledging that all children are not registered, is currently the most comprehensive source of data regarding population figures for people with intellectual disability in Ireland. With the approval of the Steering Committee of the NIDD, the HRB provided the researchers with a break-down of the number of children between the ages of three and six who were registered with each returning agency on the NIDD database in 2005. In the vast majority of cases, the returning agency to the NIDD is the main service provider for the child. Using a breakdown of the number of children with each returning agency on the database, therefore, it was possible to determine the correct national distribution of the questionnaire throughout intellectual disability service providers (including voluntary bodies and HSE services). 14 Final text of Announcement Letter and Information Letter can be seen in Appendix IV, page 167. For further details on the Questionnaire text contact the National Federation of Voluntary Bodies (www.fedvol.ie) 79 5. NATIONAL QUESTIONNAIRE SURVEY OF PARENTS AND PROFESSIONALS

Informing Families Consultation and Research Report It was decided to survey 40% of children receiving services from each service provider in order to aim to gather data representative of the national population. This calculation was based on the return rates of the pilot questionnaire. No names or PIN numbers could be provided to the researchers for confidentiality reasons, so the break-down of the number of children registered by each agency was indicative of the number of children to be surveyed in each service; the names of which were then chosen using a random alphabetical system. It was agreed to survey only those agencies which provided services to more than 1% of children aged 3-6 nationally, for pragmatic reasons, since there were a large number of very small agencies providing less than 1% of service, and to include them would involve significant administrative support, without providing significant additional information. The population figures were broken down as follows: National Intellectual Disability Database 2005 Population Figures: ● Children aged 3-6 years = 1189 children (excludes children receiving no service). ● Number of agencies providing services to >1% of 3-6 years population = 25 agencies. ● Sum of 40% of the caseload of children (aged 3-6) of the above 25 agencies = 325 families. 15 A point to note is that the HRB indicated in correspondence to the Informing Families Project that the number of young children with intellectual disability is likely to be underestimated by NIDD registrations. In compiling the database, attempts are made to discover every child with intellectual disability at the earliest possible age but respect is also given to situations where parents are reluctant to allow information about their young child to be recorded on the NIDD. Once the sample size for each agency was determined, an alphabetical list of children meeting the criteria to be included in the survey was compiled by each participating service provider. The following criteria were used to determine eligibility: ● The child was aged between three and six years at the time of dissemination (July 2006). Children were required to be aged three years of age by January 2006. ● The child’s parent(s) or guardian(s) had received their child’s diagnosis in the Republic of Ireland. ● The returns to the National Intellectual Disability Database for each child on the list were made by the agency disseminating the questionnaire (to avoid any double counting). ● The child was receiving services from the disseminating service provider for at least one year. (All children had to be with the service since at least 1 July 2005). ● Children who were no longer receiving any support/regular contact from Early Services (e.g. if they had moved on to mainstream school and no longer access support from the service provider) were removed to avoid contacting parents who did not have a clearly identified source of support. Following the creation of the alphabetical list of children meeting the selection criteria, the final sample for each agency was determined using the steps below: a. Each agency was made aware of the number of children required to be included from their service. b. Using the final alphabetical list the contact person was asked to pick every third name, starting with the first on the list, and continuing with the fourth, the seventh, and so on until the end of the alphabetical list was reached. c. When the end of the alphabetical list was reached the contact person returned to the remaining names from the top down to complete the required number for the sample. Distribution Ethical approval was secured to send the parents the questionnaire via a support worker (e.g. social worker, key worker) in the organisation providing services to their child, who would therefore be known to the parents. The support worker was contacted by the Informing Families Project Co-ordinator, to liaise on the distribution of the questionnaire. As with the UK survey, the questionnaire was disseminated by post. The following procedure was followed by each agency: ● An announcement letter was sent to each of the families in the sample on 5th July 2006. The announcement letter indicated to parents that the questionnaire would be sent to them shortly. It detailed the origins of the project; its aims and objectives; and assured families that no personal information had been or would be passed on to any third party. It stressed that 15 The contact person in the smallest of the agencies which had agreed to participate (representing 4 families) was on annual leave at the time of distribution and this agency did not therefore participate. 80

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