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chapter 2 - National Federation of Voluntary Bodies

chapter 2 - National Federation of Voluntary Bodies

APPENDIX V List

APPENDIX V List of tables and figures in the Informing Families Project Report Table 4.1 - Background Statistics for Focus Groups Table 4.2 - Disciplines Involved in Professional Focus Groups Table 5.1 - Distribution of Informing Families Questionnaire to Professionals Data from Parent Questionnaires Table 5.2 - Relationship of respondent to child Table 5.3 - Region in which respondent was living when diagnosis received Table 5.4 - First language of parents Table 5.5 - Type of disability present Table 5.6 - Severity of disability Table 5.7 - Disability or syndrome name Table 5.8 - Presence of family members Table 5.9 - Presence of additional staff members Table 5.10 - Service setting for disclosure Table 5.11 - Environment for disclosure Table 5.12 - Initiation of disclosure discussion Table 5.13 - Communication of the diagnosis Table 5.14 - Comprehension of the diagnosis Table 5.15 - Amount/level of information received Table 5.16 - Quality of information Table 5.17 - Timing of written information provision Table 5.18 - Information regarding tests Table 5.19 - Follow-up appointments and named contacts Table 5.20 - Support options offered Table 5.21 - Parental preferences for support options Table 5.22 - Cultural appropriateness of information Table 5.23 - Language and interpretation services provided Table 5.24 - Recommendations for setting/location & people present Table 5.25 - Recommendations for communication Table 5.26 - Recommendations for training Table 5.27 - Recommendations for referral Table 5.28 - Recommendations for information & support Table 5.29 - Recommendations for organisation and planning Data from Professional Questionnaires Table 5.30 - Current discipline of respondents Table 5.31 - Region professionals currently practice in Table 5.32 - First language of respondent Table 5.33 - Current practice settings of professionals Table 5.34 - Employment type of professionals Table 5.35 - Frequency of involvement for staff responsible for informing Table 5.36 - Frequency of involvement for staff members supporting families Table 5.37 - Types of disability present Table 5.38 - Severity of disability Table 5.39 - Disability or syndrome name Table 5.40 - Stage at which diagnosis given Table 5.41 - Parents age at time of diagnosis Table 5.42 - Was this the family’s first child? Table 5.43 - Diagnosis came at one time or evolved over time Table 5.44 - Professional who first gave the news Table 5.45 - Presence of additional staff members Table 5.46 - Service setting for disclosure Table 5.47 - Effect of number of staff members present Table 5.48 - Presence of family members/friends Table 5.49 - Environment for disclosure Informing Families Consultation and Research Report 169

Informing Families Consultation and Research Report APPENDIX V Table 5.50 - Communication of the diagnosis Table 5.51 - Parental comprehension of the diagnosis Table 5.52 - Professional comprehension of the diagnosis Table 5.53 - First information received by parents of possible disability Table 5.54 - Amount/level of information received Table 5.55 - Quality of information received Table 5.56 - Timing of written information Table 5.57 - Tests/investigations undertaken Table 5.58 - Follow-up appointments and named contacts Table 5.59 - Continuity of staff members at follow-up appointment Table 5.60 - Support options offered Table 5.61 - First language of parents Table 5.62 - Provision of interpreter Table 5.63 - Type of interpreter Table 5.64 - Cultural appropriateness of information provided Table 5.65 - Written information-sharing between professionals Table 5.66 - Liaison between professionals Table 5.67 - Disciplines involved on previous occasions Table 5.68 - Service type of disciplines previously involved Table 5.69 - Disciplines involved on subsequent occasions Table 5.70 - Service type of disciplines subsequently involved Table 5.71 - Reviewing with colleagues Table 5.72 - Advice from senior colleague Table 5.73 - Recommendations for setting/location & people present Table 5.74 - Recommendations for communication Table 5.75 - Recommendations for training Table 5.76 - Recommendations for information & support Table 5.77 - Recommendations for referral Table 5.78 - Recommendations for organisation and planning Table 5.79 - Awareness and practice of existing guidelines Table 5.80 - Professionals’ undergraduate/postgraduate training in specific areas Table 5.81 - Professionals’ work-based training in specific areas Table 5.82 - Relevance of training in specific areas Table 5.83 - Training needs for informing families Table 5.84 - Format of guideline policies and training Combined Validation of Recommendations Table 5.85 - Setting/location & people present Table 5.86 - Communication Table 5.87 - Training Table 5.88 - Information & support Table 5.89 - Referral Table 5.90 - Organisation & planning 170

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