There has been an explosion of studies in the field of genetic hearing impairment in the past decade, associated with major advances in our understanding of the mechanisms and conditions involved. However, a recent review has highlighted the very limited number of studies on the effects of such hearing impairment on the individuals and families of those concerned. In The Effects of Genetic Hearing Impairment in the Family, under the aegis of the European Union GENDEAF programme, the editors have taken the first steps to address this deficit in our knowledge and understanding of this topic. The book addresses the problem by secondary analyses of existing large scale population studies, by prospective investigation of individuals with a family history of hearing impairment and by specific studies on patients with otosclerosis and neurofibromatosis 2 and their families. In addition several chapters look at the specific impact of deaf culture, ethnicity and religion on reactions to deafness and the specific needs in genetic counselling.
This book represents an important first step in this field and should be an invaluable resource for all professionals involved with people with hearing impairments.
Contributors. Preface. Acknowledgements. PART I: RETROSPECTIVE STUDIES. 1. The impact of having a family history of hearing loss in elderly people (Dafydd Stephens, Peter Lewis and Adrian Davis). 2. The impact of a family history of hearing loss in the Blue Mountain Study (Doungkamol Sindhusake, Dafydd Stephens, Phillip Newall and Paul Mitchel).l 3. The impact for children of having a family history of hearing impairment in a UK-wide population study (Heather Fortnum, Garry Barton, Dafydd Stephens, Paula Stacey, A. Quentin Summerfield). 4. Early childhood hearing impairment and family history - a long-term perspective (Per-Inge Carlsson and Berth Danermark). 5. Effects of a history of hearing problems in the family of origin on the working life (Lotta Coniavitis Gellerstedt and Berth Danermark.) Prospective studies - late onset hearing impairment. PART II: PROSPECTIVE STUDIES-LATE ONSET HEARING IMPAIRMENT. 6. Effects of a family history on late onset hearing impairment: results of an open-ended questionnaire (Sophia E. Kramer, Adriana A. Zekveld and Dafydd Stephens). 7. Effects of a family history on late onset hearing impairment: results of an open-ended questionnaire (Sophia E. Kramer, Adriana A. Zekveld and Dafydd Stephens). 8. The impact that a family history of hearing impairment has on those with the condition themselves (Sarah Coulson). 9. Influence of a family history of hearing impairment on participation restriction, activity limitation, anxiety and depression (Angeles Espeso and Dafydd Stephens). 10. Does a family history of hearing impairment effect help seeking behaviour and attitudes to rehabilitation (Claire Wilson and Dafydd Stephens). 11. The impact of a Family History of Hearing Impairment on rehabilitative intervention: A one-year follow-up (Christophe saglier, Fernando Perez-Diaz, Lionel Collet and Roland Jouvent). PART III: CONDITIONS ASSOCIATED WITH FAMILIAL HEARING IMPAIRMENT. 12. The influence of a family history of hearing loss and/or of tinnitus on tinnitus annoyance and distress (Sylviane Chery-Croze and Hung Thai-Van). 13. Tinnitus -The Impact of Family History (Veronica Kennedy and Dafydd Stephens). 14. Psychosocial aspects of Neurofibromatosis type 2 reported by affected individuals (Wanda Neary, Dafydd Stephens, Richard Ramsden, and Gareth Evans). 15. Psychosocial aspects of Neurofibromatosis type 2 reported by relatives/ significant others (Wanda Neary, Dafydd Stephens, Richard Ramsden, and Gareth Evans). 16. Attitudes of Adults with Otosclerosis Towards Issues Surrounding Genetics and the Impact of Hearing Loss (Anna Middleton, Ioannis Moumoulidis, Graeme Crossland, Mallappa Raghu, Pranay Kumar Singh, Evan Reid, Patrick Axon). 17. Peoples reaction to having a family history of Otosclerosis (Dafydd Stephens and Nele Lemkens). PART IV: GENETIC COUNSELLING AND FAMILY REACTIONS. 18. Genetic Counselling and the d/Deaf Community (Anna Middleton). 19. Seeing Chromosomes: improving access to culturally-sensitive genetic counselling through the provision of genetic information in British Sign Language (Rachel Belk). 20. Ethnicity, spirituality and genetics services (Lesley Jones, Ghazalla Mir and Rohanna Khan(. 21. Living with NF2 (Peter Crawshaw and Cynthia Crawshaw(. 22. The meaning of hearing loss in the same family over nearly 200 years (Anna-Carin Rehnman). PART V: RESEARCH NEEDS. 23. Family History of Hearing Impairment and its psychological and social consequences - what next (Berth Danermark, with contributions from Per-Inge Carlsson, Lesley Jones and Dafydd Stephens). Index.