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 Piloting Four pilot studies of the Informing Families Questionnaire for Professionals were carried out: a) Multidisciplinary Group – the individuals who took part in the multidisciplinary focus group during the qualitative phase of the project were invited to fill out the pilot questionnaire at the end of the session, as this provided access to a wide range of professional disciplines. b) Hospital – Postal pilot of questionnaire to thirteen staff members, chosen from disciplines identified through the Parent Questionnaire as being involved in the disclosure process. c) HSE Community Services – Pilot distributed by the HSE via email to members of 11 disciplines identified through the Parent Questionnaire as being involved in the disclosure process. d) Disability Service Provider – Postal pilot of a rural based disability service provider; questionnaire circulated to each member of the Early Intervention Team. In total 16 responses were received. It is not possible to determine the exact response rate as some of the distributing contacts did not wish to disclose the precise number of questionnaires sent out. The main issue raised in feedback from the pilot questionnaires was the length of the questionnaire, with some respondents feeling that it was too long. However, in order to remain fully comparable with the Parent Questionnaire it was decided to maintain the structure of mirroring the parent survey. The majority of respondents indicated that the questions asked were appropriate and relevant and did not recommend the removal of any specific questions. Adjustments were made to the language of a number of questions to ensure readability and to clarify meaning based on responses received. Respondents variously noted that the questionnaire took between 15 minutes and 1 hour to complete. Selection of Professional Participants In order to determine the sampling frame for distribution of the Professional Questionnaire, analysis was undertaken on the responses to the Parent Questionnaire. In the Parent Questionnaire the following question was asked: “Who was involved in telling you about your child’s disability?” (Question 7, Informing Families Parent Questionnaire) It was noted that the news often came over a few stages and parents were therefore invited to list those who had told them at various different times, if applicable (four blank spaces provided). The responses to all categories were added together and provided a list that included 85 separately named disciplines. There were clearly identifiable groups that could be categorised together within this listing (e.g. ‘Gynaecologist’, ‘Obstetrician’, ‘Obstetrician/Gynaecologist’ and ‘Consultant Obstetrician/Gynaecologist’ were all collapsed into ‘Obstetrician/Gynaecologist’.) The list of 85 disciplines collapsed into 36 meaningful categories as indicated in Table 5.1. To the 36 groups identified by the parents one was added; Ultra-sonographers. It had emerged in the Focus Group consultation that those carrying out the ultrasound scan at the ante-natal stage are very often the individuals to first communicate a concern to parents in a prenatal setting. The reason that they may not have been named in the Parent Questionnaire may be due to the fact that many Ultra-sonographers are midwives or radiographers by discipline, and may be known to the parents in that way. Additionally, to mirror the focus group process, the category of ‘trainee doctors’, as identified 9 times by parents but not fully broken down into disciplines, was divided into Trainee Obstetrician/Gynaecologists (SpR level) and Trainee Paediatricians (SpR level). In a number of cases where disciplines were mentioned only once (e.g. Dermatologist, Oncologist) specialist medical advice was sought to see if it would be typical practice for this discipline to be involved in the diagnosis disability, and where this was not the case the disciplines were not surveyed. Due to the large number of disciplines (and the large numbers present in certain disciplines such as GP’s (at least 2,500)) it was not possible within the scope of the project to choose a statistically representative sample of each discipline. Two sample sizes were therefore chosen in order to reflect the relative involvement of the various disciplines, with those disciplines who were listed as being involved more often receiving a larger number of questionnaires. For all disciplines that received more than nine mentions in the Parent Questionnaires, 120 questionnaires were sent. Disciplines that received fewer mentions received 50 Questionnaires. For those whose disciplines contain less than 50 members, all members were surveyed. In the case of GP’s due to the numbers present in the discipline 120 members were surveyed even though the discipline was mentioned only four times. 83 5. NATIONAL QUESTIONNAIRE SURVEY OF PARENTS AND PROFESSIONALS

Informing Families Consultation and Research Report In each case serious consideration was given to the most representative manner in which to choose the sample. Table 3 illustrates the channels of distribution chosen. In the case of the disciplines listed under ‘Irish Medical Directory’, a sample was generated from all members listed in the 2006 Irish Medical Directory, as this was deemed the most complete available listing of members of those disciplines. An alphabetical system identical to that used in the Parent Questionnaire was employed in this case. For other disciplines it was possible to identify a sample through the membership of national organisations, professional bodies or trade unions. Many of these organisations do not have 100% coverage of all members of a discipline, but were chosen as the most complete and accessible national listing of the discipline. For Area Medical Officers, the Principal Area Medical Officers in the various regions provided the sample, whilst for Social Work and Ultrasonographers it was necessary to make individual phone calls to hospitals, disability organisations and community services in order to request participants, due to an absence of a national database for those disciplines. Distribution The Professional Questionnaire was accompanied by an ‘Information Letter’ and a reminder was sent three weeks after dissemination. Distribution of the Professional Questionnaire was a complex process due to the large number of disciplines and the need for differing processes to be followed with each. For a number of the participating organisations, the Questionnaire and reminder letters were posted directly by the contact person, as it was against organisation policy to release names and work addresses to researchers. For other organisations, a list of names and addresses was provided to the researcher, who then posted the Questionnaire. For those accessed through the Irish Medical Directory, the Questionnaire was posted by the researcher. As mentioned above, in the case of various disciplines, such as Social Work and Ultrasonographers, there is no existing national database of members, and therefore direct contacts were made in order to access names and addresses. Consent In order to ensure confidentiality and anonymity, it was agreed that it would not be appropriate to circulate a consent form requiring a signature. This approach was approved by the St. Michael’s House Research Ethics Committee. Therefore as all respondents (parent and professional) needed to proactively send the questionnaire back to the Informing Families Project Coordinator in order to participate, it was deemed that free choice remained with the individual to choose to participate or not as they wished. Treatment of data for parent and professional questionnaires: ● The survey questionnaire was administered by post, and returned to the National Federation of Voluntary Bodies Headquarters. ● The paper copies of the returned questionnaire are held in a secure locked cabinet. ● The data from the completed questionnaires was entered in a computer-held database. ● The software package Statistical Package for the Social Sciences (SPSS) was used in analysing the data. ● When the full Informing Families project work is completed the raw data will be destroyed. This will take place no later than 10 years from the date of publication, in line with the Data Protection Act. ● No personally identifiable information is stored on computer. 84

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
Achieve More 2 - National Council for Voluntary Organisations
annual report 2006 annual report 2006 - National Federation of ...
Fish friers Review - Mar / Apr 2012 - Issue 2 - National Federation of ...
here - National Federation of Voluntary Bodies
Programme - National Federation of Voluntary Bodies
Programme - National Federation of Voluntary Bodies
here - National Federation of Voluntary Bodies
here - National Federation of Voluntary Bodies
Annual Report 2010 - National Federation of Voluntary Bodies
Annual Report 2007 - National Federation of Voluntary Bodies
Equal Citizens - National Federation of Voluntary Bodies
Fed Vol-A4x4NL-61760 - National Federation of Voluntary Bodies
Spring 2012 - National Federation of Voluntary Bodies
NEEDS AND ABILITIES - National Federation of Voluntary Bodies
Programme FINAL - National Federation of Voluntary Bodies
Information document - National Federation of Voluntary Bodies
co-researcher handbook - National Federation of Voluntary Bodies