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chapter 2 - National Federation of Voluntary Bodies

chapter 2 - National Federation of Voluntary Bodies

APPENDIX IV INFORMING

APPENDIX IV INFORMING FAMILIES PARENT QUESTIONNAIRE - ANNOUNCEMENT LETTER 1st Date Dear Parent, Disseminating Agency logo/headed paper Informing Families Project - Questionnaire Informing Families Consultation and Research Report The [Agency Name] Early Childhood Services team is working with an organisation called the National Federation of Voluntary Bodies, on a project called the ‘Informing Families Project’. The aim of the project is to develop and implement national best practice guidelines for how families are informed that their child has a disability. The project has been undertaken in recognition of the importance of sharing the news of a child’s disability with a family in the most sensitive manner possible. Parents have reported positive and negative experiences of being given this news. The aim of the project is to produce guidelines that will help improve communication with families, improve skill and confidence in staff in informing families, and ensure that families throughout Ireland are informed of their child’s disability in the best way possible. To help gather information for this project, we are circulating a questionnaire to a sample of parents. This is a national survey, and a random sample of parents throughout the country is being invited to complete the questionnaire. Each of the parents has a child (or children) between the ages of 3 and 6, who have a disability or developmental delay. The questionnaire will invite parents to share their experiences of how they were told the news of their child’s disability. The information gathered will be used as part of the development of best practice guidelines. The purpose of this letter is to alert you that the questionnaire will be sent to you in the coming days and to stress that your participation is absolutely voluntary. If you do not wish to participate, please simply ignore the second letter which contains the questionnaire. If you do wish to participate, the questionnaire will ask you questions describing how you were given your child’s diagnosis, and the recommendations that you would make for future practice. The questionnaire will be returned directly to the National Federation of Voluntary Bodies, and not to the Early Childhood Services Team, so any details you include will not be known to anyone providing services to your child, to ensure your confidentiality. The questionnaire will be sent to you in the coming days. If you wish to participate, please fill out the questionnaire. A stamped addressed envelope will be provided for you to send the questionnaire to the project co-ordinator in the National Federation of Voluntary Bodies, Alison Harnett. If you do not wish to participate please simply ignore the questionnaire and dispose of it. If you have any questions about the Informing Families Project, please do not hesitate to contact the Project Co-ordinator, Alison Harnett, or myself. If for any reason any of the issues raised by this letter or by the questionnaire cause you distress, if you would like any help filling out the questionnaire, or if you would like to discuss the project further, please contact me and I will be happy to provide you with support. If you wish to receive the questionnaire in an accessible format please contact us and we will arrange this. If more than one parent/guardian wishes to fill out the questionnaire separately, or if a second parent/guardian wishes to include extra information, the questionnaire can be photocopied, extra pages can be attached, or you can contact Alison Harnett to request a second copy (contact details below). We strongly acknowledge that how you were informed of your child’s disability can be a very emotional subject. It is therefore important that you only provide information which you are comfortable sharing. The general information gathered through the survey may be published, however all information gathered will be treated with utmost confidence, and anonymity will be protected. Your name will never be used and you will not be recognised in any published material. We have made numerous efforts to try to ensure that this questionnaire is only sent to people whose child has a disability. If you have received this questionnaire in error we sincerely apologise and please feel free to contact us with any feedback. Best wishes, Support Contact, Title Address: Phone: National Federation of Voluntary Bodies Contact Details: Alison Harnett, Project Co-ordinator, Informing Families Project. National Federation of Voluntary Bodies Oranmore Business Park, Oranmore, Galway. Phone: 091 792316 Email: Alison.harnett@fedvol.ie 167

Informing Families Consultation and Research Report APPENDIX IV INFORMING FAMILIES PARENT QUESTIONNAIRE – INFORMATION LETTER Date (1 week after Announcement Letter) Dear Parent, Informing Families Project - Questionnaire As detailed in a letter that was sent to you in the past few days, the National Federation of Voluntary Bodies is running a project to develop and implement national best practice guidelines for how families are informed of their child’s disability. The project has been undertaken in recognition of the importance of sharing the news of a child’s disability with the family in the most sensitive manner possible. Parents in Ireland have reported positive and negative experiences of being given the news. The project aim is to produce guidelines that will help improve communication with families, improve skill and confidence in staff in informing families, and ensure that families throughout Ireland are informed of their child’s disability in the best way possible. To help gather information for this project, the [Agency Name] Early Services Team is working with the National Federation of Voluntary Bodies to circulate a questionnaire to parents. This is a national survey, and a sample of parents throughout the country are being invited to complete the questionnaire. Each of the parents has a child or children between the ages of 3 and 6, who has a disability or developmental delay. We would like to invite you to complete the enclosed questionnaire. The aim of the questionnaire is to gather parent’s experiences of being told the news of their child’s disability, and to listen to parents’ recommendations for how the process should work. We intend to use the information gathered as part of the development of best practice guidelines. Your participation is absolutely voluntary. If you do not wish to complete the questionnaire, please simply ignore this letter. If you do wish to participate, please complete the questionnaire and return it to the National Federation of Voluntary Bodies in the stamped addressed envelope provided. The questionnaire is returned directly to the National Federation of Voluntary Bodies, and not to the Early Childhood Services Team, so that any details you include will not be known to anyone providing services to your child, to ensure your confidentiality. If you have any questions about the Informing Families Project or wish to discuss the project further, please do not hesitate to contact myself (Alison Harnett), or [Support Contact] in the Early Childhood Services Team. If for any reason any of the issues raised by the questionnaire cause you distress or if you would like help with filling out the questionnaire, please contact [Support Contact], who will be happy to provide you with support. We strongly acknowledge that this can be a very emotional subject. It is therefore important that you only provide information which you are comfortable sharing. The general information gathered through the survey may be published, however all information gathered will be treated with utmost confidence, and anonymity will be protected. Your name will never be used and you will not be recognised in any published material. If you wish participate, we would be grateful if you could send the completed questionnaire back to the Informing Families Project Coordinator by [Closing Date], (using the stamped addressed envelope provided), as this will be the closing date. Please note that this letter was sent to you by the Early Childhood Services Team on behalf of the National Federation of Voluntary Bodies, so that your name and address remain at all times confidential. No names or addresses were provided to the National Federation of Voluntary Bodies. If you wish to receive the questionnaire in an accessible format please contact us and we will arrange this. If more than one parent/guardian wishes to fill out the questionnaire separately, or if a second parent/guardian wishes to include extra information, the questionnaire can be photocopied, extra pages can be attached, or you can contact Alison Harnett to request a second copy (contact details below). We have made numerous efforts to try to ensure that this questionnaire is only sent to people whose child has a disability. If you have received this questionnaire in error we sincerely apologise and please feel free to contact us with any feedback. Best wishes, Alison Harnett, Informing Families Project Co-ordinator, Principle Researcher. National Federation of Voluntary Bodies, Oranmore Business Park, Oranmore, Galway. PHONE: 091 792316 EMAIL: Alison.harnett@fedvol.ie WEBSITE: www.fedvol.ie [Early Services team name] Contact Details: Name, Title Address Phone: 168

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