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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 participation was voluntary, anonymous and confidential and that the questionnaire would arrive in the following days. It indicated that those wishing to participate should return the questionnaire to the Informing Families Project Co-ordinator using the stamped addressed envelope supplied, and that those not wishing to participate should simply dispose of the questionnaire. ● One week later on 12 July 2006 the Information Letter and the Questionnaire were circulated to the same families, along with a stamped addressed envelope. The information letter reiterated the details from the announcement letter and advised families of the closing date of 28th July 2006. Both the announcement letter and the information letter provided details of the specific support/contact person who had been identified and was available to parents should they require it for any reason as a result of receiving the questionnaire. Both letters also invited the parents to make contact with the Informing Families Project Co-ordinator, should they have any questions or should they wish to access support from an alternative source. For ethical reasons it was decided that it would not be appropriate to issue a reminder letter. 16 The questionnaire was returned directly to the Project Co-ordinator, rather than to the service provider so that no-one providing services to the family would be aware of whether the family responded or not, or any details of their response. To further safeguard the anonymity of the participants, and given that the respondents were fully informed of the purpose of the questionnaire, no consent form was used, so that no names were provided to the Project Co-ordinator. The front page of the questionnaire indicated that by returning the questionnaire, the respondent was consenting to participation. The only case in which the identity of families responding would be known to the service provider or Project Co-ordinator, was if the family chose to make use of the support contact offered – in order to access translation/interpretation/literacy support, or to receive support if filling out the questionnaire caused distress that the family wished to discuss. Parent Questionnaire - Physical and Sensory Disability: It was originally intended to use the database corresponding to the NIDD for physical and sensory disabilities in Ireland; the National Physical and Sensory Disability Database (NPSDD); as the sampling frame for the survey of parents of children with physical and sensory disabilities. However, the questionnaire was instead circulated to parents of children with physical and sensory disabilities directly by selected physical and sensory disability service providers, rather than using the returning agencies noted on the NPSDD as was originally planned. The reason for the difference from the NIDD approach is that whilst the returning agency for children listed on the NIDD is almost always the main service provider, the same case does not apply to children on the Physical and Sensory Disability Database. Within the NPSDD, there is limited involvement of service providers in the collection of data for this database. Hence the HSE Local Health Officers are primarily the agency returning the data, even though they may have a limited or no role in actual service provision to the child. The Health Research Board (HRB) has explained that people with physical or sensory disabilities tend to be involved with a myriad of service providers, (unlike intellectual disability services where people tend to receive all of their services through one provider) and identifying a primary service provider out of these would be a subjective judgement. For ethical reasons, given the sensitivity of the topic, it was clear that it would be more appropriate for families to receive the questionnaire from a contact with whom they are familiar and to whom they could turn to for support if required, and it was on this basis that dissemination was carried out directly through the service providers. In addition, it was noted that the return rate to the 2005 NPSDD was just 59.4% of the estimated national target coverage for this database (Doyle et al, 2006) and the NPSDD was therefore not seen as sufficiently representative of the national population to be viable for the sampling frame in this instance. (The corresponding estimation of coverage of the NIDD for the same year was 95% ). 17 Four national service providers were chosen for the distribution of the questionnaire in the physical and sensory areas. Together, these sources provide the widest national populations of children in the age group of three to six years with physical and sensory disabilities, who have accessible and identifiable sources of support to satisfy the ethical considerations of the project. ● Enable Ireland (Physical Disability) ● Central Remedial Clinic (Physical Disability) ● National Council for the Blind of Ireland (Sensory Disability) ● Visiting Teachers for the Deaf, accessed via the Department of Education and Science (Sensory Disability) Geographical areas were split between Enable Ireland and the Central Remedial Clinic, in order to ensure that no double counting took place. In order to determine the number of families that should be surveyed by each agency, the full population figures for each were requested from the service providers. As per the NIDD process, each national agency were then requested 16 Full text of Announcement and Information Letter available in Appendix IV, page 167 17 Private correspondence from HRB 81 5. NATIONAL QUESTIONNAIRE SURVEY OF PARENTS AND PROFESSIONALS

Informing Families Consultation and Research Report to survey 40% of their caseload within the age-group, again excluding local services around the country which provide less than 1% of national service to children with physical and sensory disabilities between the ages of three and six, as per the intellectual disability approach. The total number of families meeting these criteria was 263. Once the sample sizes had been determined, the same process was followed as per the intellectual disability dissemination, using the same alphabetical system and documentation. The survey was posted in September 2006. The questionnaires were marked before being disseminated in order to allow the returns to be distinguished from the intellectual disability questionnaires for the final analysis. Taking the total sample size from the families of children with intellectual disabilities (321) plus the sample from the families of children with physical and sensory disabilities (263) the full sample size came to 584 families. Summary of Ethical Considerations The following safeguards were implemented into the research design of the questionnaire, to satisfy ethical concerns: ● It was decided to survey parents of children between the ages of three and six rather than nought and six, in order to minimise the chance of contacting parents for whom the disclosure event was very recent. (It is acknowledged that for parents of children with evolving diagnosis, diagnosis may still be recent or unconfirmed at age three). ● The service providers circulating the questionnaire were requested to only include parents of children who had been with their service for over one year. This was intended to further safeguard against contacting parents with very recent disclosure experiences. Any family whose child had moved on entirely from early services (e.g. into mainstream school) and therefore no longer accessed support from the agency were removed from the sample. ● Some open-ended questions used within the UK version of the ‘Right from the Start’ questionnaire were eliminated, as it was felt that these questions could be a very emotional trigger for parents, and that asking these questions in a questionnaire administered by post could cause ethical difficulties. ● The respondents to the parent questionnaire were made aware that support was available to them should they require it for any reason following completion of the questionnaire. A support contact known to the respondents was nominated in a covering letter provided with the questionnaire. ● Respondents were made aware that they had the opportunity to contact the organisation providing services (in the case of parents) or the Project Co-ordinator (in the case of the professionals) if they would like to provide additional information or explore any issues raised by the questionnaire in greater detail. ● The international literature was examined and precedence for a postal questionnaire to parents on this topic was established (Abramsky, 2001, Brogan & Knussen, 2003). ● All respondents to the questionnaire, both professional and parent, were assured that their participation was voluntary. ● All respondents to the questionnaire, both professional and parent, were assured that their responses remain confidential and that no personally identifiable information will be used. ● Children receiving no services were excluded from the study, as it was thought that their parents may have wished not to engage with service providers at this time, and in keeping with the ‘no harm’ ethical principle, it would not be appropriate to make contact with these families. Questionnaire for Professionals: A questionnaire corresponding to the parent survey was circulated in late 2006 and early 2007, to 1588 professionals in 27 disciplines who were identified through the Parent Questionnaire as disclosing the diagnosis of a child’s disability, or supporting families immediately after the diagnosis is given. Research Instrument used The questions in the Professional Questionnaire mirrored those asked in the Parent Questionnaire, and asked professionals to reflect on the last occasion on which they had communicated a diagnosis of a child’s disability to a family, or supported a family who had just received such a diagnosis. Additional questions were added to identify any existing guidelines and to explore the training and support needs of professionals when disclosing the news of a child’s disability. Respondents were also asked to comment on how the Guidelines could be most effectively disseminated to the relevant professionals. The Professional Questionnaire was approved by the Informing Families Steering Committee and the St. Michael’s House Research Ethics Committee. 82

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