메뉴 건너뛰기




Volumn 49, Issue 4, 2012, Pages 425-436

Approaching parents to take part in a cleft gene bank: A qualitative pilot study

Author keywords

Cleft lip and palate; Gene bank; Parent perception; Qualitative

Indexed keywords

ADOLESCENT; ARTICLE; AUDIO RECORDING; CHILD; CLEFT FACE; CLEFT LIP PALATE; CONTROLLED STUDY; FAMILY; FEMALE; GENBANK; HEALTH CARE PERSONNEL; HEREDITY; HUMAN; INFANT; INFORMATION PROCESSING; KNOWLEDGE; MAJOR CLINICAL STUDY; MALE; OROFACIAL CLEFTING; PARENT; PARENT COUNSELING; PILOT STUDY; PRESCHOOL CHILD; PRIORITY JOURNAL; QUALITATIVE RESEARCH; RISK FACTOR; SCHOOL CHILD; SEMI STRUCTURED INTERVIEW; THEMATIC ANALYSIS; TRUST; UNITED KINGDOM; CLEFT LIP; CLEFT PALATE; GENETICS; HEALTH CARE FACILITY; INTERVIEW; NEWBORN; ORGANIZATION AND MANAGEMENT; PSYCHOLOGY;

EID: 84862004797     PISSN: 10556656     EISSN: 15451569     Source Type: Journal    
DOI: 10.1597/10-086     Document Type: Article
Times cited : (6)

References (44)
  • 1
    • 84993783337 scopus 로고    scopus 로고
    • Thematic networks: An analytic tool for qualitative research
    • Attride-Stirling J. Thematic networks: an analytic tool for qualitative research. QRJ. 2001;1:385-405.
    • (2001) QRJ , vol.1 , pp. 385-405
    • Attride-Stirling, J.1
  • 2
    • 7544250377 scopus 로고    scopus 로고
    • Warranted concerns, warranted outlooks: A focus group study of public understandings of genetic research
    • DOI 10.1016/j.socscimed.2004.05.012, PII S0277953604002461, Equity, Capabilities and Health
    • Bates BR, Lynch JA, Bevan JL, Condit CM. Warranted concerns, warranted outlooks: a focus group study of public understandings of genetic research. Soc Sci Med. 2005;60:331-344. (Pubitemid 39452549)
    • (2005) Social Science and Medicine , vol.60 , Issue.2 , pp. 331-344
    • Bates, B.R.1    Lynch, J.A.2    Bevan, J.L.3    Condit, C.M.4
  • 3
    • 33750505977 scopus 로고    scopus 로고
    • Using thematic analysis in psychology
    • Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psych. 2006;3:77-101.
    • (2006) Qual Res Psych , vol.3 , pp. 77-101
    • Braun, V.1    Clarke, V.2
  • 4
    • 2942705950 scopus 로고    scopus 로고
    • Long term follow up study of survival associated with cleft lip and palate at birth
    • Christensen K, Juel K, Herskind AM, Murray JC. Long term follow up study of survival associated with cleft lip and palate at birth. BMJ. 2004;328:1405-1408.
    • (2004) BMJ , vol.328 , pp. 1405-1408
    • Christensen, K.1    Juel, K.2    Herskind, A.M.3    Murray, J.C.4
  • 5
    • 84942531351 scopus 로고    scopus 로고
    • Available at Accessed March 2009
    • Cleft Lip and Palate Association, Available at http://www.clapa.com/. Accessed March 2009.
  • 6
    • 1642383053 scopus 로고    scopus 로고
    • The complex genetics of cleft lip and palate
    • DOI 10.1093/ejo/26.1.7
    • Cobourne MT. The complex genetics of cleft lip and palate. Eur J Orthod. 2004;26:7-16. (Pubitemid 41296499)
    • (2004) European Journal of Orthodontics , vol.26 , Issue.1 , pp. 7-16
    • Cobourne, M.T.1
  • 7
    • 79955596316 scopus 로고    scopus 로고
    • The space between: Being an outsider-insider in qualitative research
    • Corbin Dwyer S, Buckle J. The space between: being an outsider-insider in qualitative research. Int J Qual Methods. 2009;8:54-63.
    • (2009) Int J Qual Methods , vol.8 , pp. 54-63
    • Corbin Dwyer, S.1    Buckle, J.2
  • 8
    • 33749476204 scopus 로고    scopus 로고
    • Racial and ethnic disparity in participation in DNA collection at the Atlanta site of the National Birth Defects Prevention Study
    • DOI 10.1093/aje/kwj264
    • Crider KS, Reefhuis J, Woomert A, Honein MA. Racial and ethnic disparity in participation in DNA collection at the Atlanta site of the National Birth Defects Prevention Study. Am J Epidemiol. 2006;164:805-812. (Pubitemid 44522085)
    • (2006) American Journal of Epidemiology , vol.164 , Issue.8 , pp. 805-812
    • Crider, K.S.1    Reefhuis, J.2    Woomert, A.3    Honein, M.A.4
  • 9
    • 62349127658 scopus 로고    scopus 로고
    • Making connections: The relationship between epistemology and research methods
    • Darlaston-Jones D. Making connections: the relationship between epistemology and research methods. Aust Comm Psych. 2007;19:19-27.
    • (2007) Aust Comm Psych , vol.19 , pp. 19-27
    • Darlaston-Jones, D.1
  • 10
    • 40649123598 scopus 로고    scopus 로고
    • Beyond informed consent: The therapeutic misconception and trust
    • de Melo-Martin I, Ho A. Beyond informed consent: the therapeutic misconception and trust. J Med Ethics. 2008;34:202-205.
    • (2008) J Med Ethics , vol.34 , pp. 202-205
    • De Melo-Martin, I.1    Ho, A.2
  • 12
  • 13
    • 70449401614 scopus 로고    scopus 로고
    • Regulating biobanks: A twelve-point typological tool
    • Gibbons SM. Regulating biobanks: a twelve-point typological tool. Med Law Rev. 2009;17:313-346.
    • (2009) Med Law Rev , vol.17 , pp. 313-346
    • Gibbons, S.M.1
  • 14
    • 70249122789 scopus 로고    scopus 로고
    • Pediatric biobanks: Approaching informed consent for continuing research after children grow up
    • Goldenberg AJ, Hull SC, Botkin JR, Wilfond BS. Pediatric biobanks: approaching informed consent for continuing research after children grow up. J Pediatr. 2009;155:578-583.
    • (2009) J Pediatr , vol.155 , pp. 578-583
    • Goldenberg, A.J.1    Hull, S.C.2    Botkin, J.R.3    Wilfond, B.S.4
  • 15
    • 0035130957 scopus 로고    scopus 로고
    • ALSPAC - The Avon Longitudinal Study of Parents and Children I. Study methodology
    • DOI 10.1046/j.1365-3016.2001.00325.x
    • Golding J, Pembrey M, Jones R, ALSPAC Study Team. ALSPAC - the Avon Longitudinal Study of Parents and Children. I. Study methodology. Paediatr Perinat Epidemiol. 2001;15(1):74-87. (Pubitemid 32155760)
    • (2001) Paediatric and Perinatal Epidemiology , vol.15 , Issue.1 , pp. 74-87
    • Golding, J.1    Pembrey, M.2    Jones, R.3
  • 17
    • 40949157146 scopus 로고    scopus 로고
    • Great expectations: Views of genetic research participants regarding current and future genetic studies
    • DOI 10.1097/GIM.0b013e318164e4f5, PII 0012581720080300000006
    • Henderson G, Garrett J, Bussey-Jones J, Moloney ME, Blumenthal C, Corbie-Smith G. Great expectations: views of genetic research participants regarding current and future genetic studies. Genet Med. 2008;10:193-200. (Pubitemid 351416816)
    • (2008) Genetics in Medicine , vol.10 , Issue.3 , pp. 193-200
    • Henderson, G.1    Garrett, J.2    Bussey-Jones, J.3    Moloney, M.E.4    Blumenthal, C.5    Corbie-Smith, G.6
  • 19
    • 22144435206 scopus 로고    scopus 로고
    • The psychosocial effects of cleft lip and palate: A systematic review
    • DOI 10.1093/ejo/cji004
    • Hunt O, Burden D, Hepper P, Johnston C. The psychosocial effects of cleft lip and palate: a systematic review. Eur J Orthod. 2005;27:274-285. (Pubitemid 41219087)
    • (2005) European Journal of Orthodontics , vol.27 , Issue.3 , pp. 274-285
    • Hunt, O.1    Burden, D.2    Hepper, P.3    Johnston, C.4
  • 20
    • 23844543814 scopus 로고    scopus 로고
    • Methodological issues in the epidemiological study of the teratogenicity of drugs
    • DOI 10.1111/j.1741-4520.2005.00062.x
    • Kallen BA. Methodological issues in the epidemiological study of the teratogenicity of drugs. Congenit Anom (Kyoto). 2005;45:44-51. (Pubitemid 41657755)
    • (2005) Congenital Anomalies , vol.45 , Issue.2 , pp. 44-51
    • Kallen, B.A.J.1
  • 22
    • 84971585775 scopus 로고
    • Qualitative research: Introducing focus groups
    • Kitzinger J. Qualitative research: introducing focus groups. BMJ. 1995;311:299-302.
    • (1995) BMJ , vol.311 , pp. 299-302
    • Kitzinger, J.1
  • 23
    • 77649186108 scopus 로고    scopus 로고
    • Initial counseling for cleft lip and palate: Parents' evaluation, needs and expectations
    • Kuttenberger J, Ohmer JN, Polska E. Initial counseling for cleft lip and palate: parents' evaluation, needs and expectations. Int J Oral Maxillofac Surg. 2010;39:214-220.
    • (2010) Int J Oral Maxillofac Surg , vol.39 , pp. 214-220
    • Kuttenberger, J.1    Ohmer, J.N.2    Polska, E.3
  • 25
    • 12344263685 scopus 로고    scopus 로고
    • The Eurocleft study: Intercenter study of treatment outcome in patients with complete cleft lip and palate. Part 3: Dental arch relationships
    • DOI 10.1597/02-119.3.1
    • Molsted K, Brattstrom V, Prahl-Andersen B, Shaw WC, Semb G. The Eurocleft study: intercenter study of treatment outcome in patients with complete cleft lip and palate. Part 3: dental arch relationships. Cleft Palate Craniofac J. 2005;42:78-82. (Pubitemid 40129740)
    • (2005) Cleft Palate-Craniofacial Journal , vol.42 , Issue.1 , pp. 78-82
    • Molsted, K.1    Brattstrom, V.2    Prahl-Andersen, B.3    Shaw, W.C.4    Semb, G.5
  • 28
    • 48449101861 scopus 로고    scopus 로고
    • A qualitative description of receiving a diagnosis of clefting in the prenatal or postnatal period
    • Nusbaum R, Grubs RE, Losee JE, Weidman C, Ford MD, Marazita ML. A qualitative description of receiving a diagnosis of clefting in the prenatal or postnatal period. J Genet Couns. 2008;17:336-350.
    • (2008) J Genet Couns , vol.17 , pp. 336-350
    • Nusbaum, R.1    Grubs, R.E.2    Losee, J.E.3    Weidman, C.4    Ford, M.D.5    Marazita, M.L.6
  • 29
    • 77954263310 scopus 로고    scopus 로고
    • Knowledge and cultural beliefs about the etiology and management of orofacial clefts in Nigeria's major ethnic groups
    • Oginni F, Asuku M, Oladele A, Obuekwe O, Nnabuko R. Knowledge and cultural beliefs about the etiology and management of orofacial clefts in Nigeria's major ethnic groups. Cleft Palate Craniofac J. 2010;47:327-334.
    • (2010) Cleft Palate Craniofac J , vol.47 , pp. 327-334
    • Oginni, F.1    Asuku, M.2    Oladele, A.3    Obuekwe, O.4    Nnabuko, R.5
  • 30
    • 34247516362 scopus 로고    scopus 로고
    • Cultural and religious components in Nigerian parents' perceptions of the aetiology of cleft lip and palate: Implications for treatment and rehabilitation
    • DOI 10.1016/j.bjoms.2006.09.005, PII S0266435606001756
    • Olasoji HO, Ugboko VI, Arotiba GT. Cultural and religious components in Nigerian parents' perceptions of the etiology of cleft lip and palate: implications for treatment and rehabilitation. Br J Oral Maxillofac Surg. 2007;45:302-305. (Pubitemid 46657061)
    • (2007) British Journal of Oral and Maxillofacial Surgery , vol.45 , Issue.4 , pp. 302-305
    • Olasoji, H.O.1    Ugboko, V.I.2    Arotiba, G.T.3
  • 31
    • 0141676224 scopus 로고    scopus 로고
    • Reflections on the cleft experience by South African adults: Use of qualitative methodology
    • DOI 10.1597/1545-1569(2003)040<0471:ROTCEB>2.0.CO;2
    • Patel Z, Ross E. Reflections on the cleft experience by South African adults: use of qualitative methodology. Cleft Palate Craniofac J. 2003;40:471-480. (Pubitemid 37129464)
    • (2003) Cleft Palate-Craniofacial Journal , vol.40 , Issue.5 , pp. 471-480
    • Patel, Z.1    Ross, E.2
  • 32
    • 38149024252 scopus 로고    scopus 로고
    • General intellectual capacity of young men with cleft lip with or without cleft palate and cleft palate alone
    • Persson M, Becker M, Svensson H. General intellectual capacity of young men with cleft lip with or without cleft palate and cleft palate alone. Scand J Plast Reconstr Surg Hand Surg. 2008;42:14-16.
    • (2008) Scand J Plast Reconstr Surg Hand Surg , vol.42 , pp. 14-16
    • Persson, M.1    Becker, M.2    Svensson, H.3
  • 33
    • 56749091916 scopus 로고    scopus 로고
    • Genetic research on rare familial disorders: Consent and the blurred boundaries between clinical service and research
    • Ponder M, Statham H, Hallowell N, Moon JA, Richards M, Raymond FL. Genetic research on rare familial disorders: consent and the blurred boundaries between clinical service and research. J Med Ethics. 2008;34:690-694.
    • (2008) J Med Ethics , vol.34 , pp. 690-694
    • Ponder, M.1    Statham, H.2    Hallowell, N.3    Moon, J.A.4    Richards, M.5    Raymond, F.L.6
  • 34
    • 17644420329 scopus 로고    scopus 로고
    • Focus-group interview and data analysis
    • DOI 10.1079/PNS2004399
    • Rabiee F. Focus-group interview and data analysis. Proc Nutr Soc. 2004;63:655-660. (Pubitemid 40558063)
    • (2004) Proceedings of the Nutrition Society , vol.63 , Issue.4 , pp. 655-660
    • Rabiee, F.1
  • 37
    • 33748506290 scopus 로고    scopus 로고
    • The consent problem within DNA biobanks
    • DOI 10.1016/j.shpsc.2006.06.007, PII S1369848606000471
    • Shickle D. The consent problem within DNA biobanks. Stud Hist Philos Biol Biomed Sci. 2006;37:503-519. (Pubitemid 44356442)
    • (2006) Studies in History and Philosophy of Science Part C , vol.37 , Issue.3 , pp. 503-519
    • Shickle, D.1
  • 39
    • 0032132530 scopus 로고    scopus 로고
    • Collecting and analysing qualitative data: Issues raised by the focus group
    • Sim J. Collecting and analyzing qualitative data: issues raised by the focus group. J Adv Nurs. 1998;28:345-352. (Pubitemid 128451674)
    • (1998) Journal of Advanced Nursing , vol.28 , Issue.2 , pp. 345-352
    • Sim, J.1
  • 40
    • 0023791730 scopus 로고
    • Perceptions of appearance and speech by adolescent patients with cleft lip and palate and by their parents
    • Strauss RP, Broder H, Helms RW. Perceptions of appearance and speech by adolescent patients with cleft lip and palate and by their parents. Cleft Palate J. 1988;25:335-342.
    • (1988) Cleft Palate J , vol.25 , pp. 335-342
    • Strauss, R.P.1    Broder, H.2    Helms, R.W.3
  • 41
    • 77349115482 scopus 로고    scopus 로고
    • Not without my permission: Parents' willingness to permit use of newborn screening samples for research
    • Tarini BA, Goldenberg A, Singer D, Clark SJ, Butchart A, Davis MM. Not without my permission: parents' willingness to permit use of newborn screening samples for research. Pub Health Genomics. 2009;13:125-130.
    • (2009) Pub Health Genomics , vol.13 , pp. 125-130
    • Tarini, B.A.1    Goldenberg, A.2    Singer, D.3    Clark, S.J.4    Butchart, A.5    Davis, M.M.6
  • 42
    • 84942508595 scopus 로고    scopus 로고
    • Available at: Accessed March 2009
    • The Healing Foundation. Cleft Lip and Palate Research Programme. Available at: http://www.thehealingfoundation.com/ thfCleftLipandPalateResearchProgramme.htm. Accessed March 2009.
    • Cleft Lip and Palate Research Programme
  • 43
    • 84942521780 scopus 로고    scopus 로고
    • Available at Accessed November 14, 2008
    • The Healing Foundation. The Healing Foundation Patient Information Project. Available at http://www.thehealingfoundation.org/ thfpatientinformationproject.htm. Accessed November 14, 2008.
    • The Healing Foundation Patient Information Project
  • 44
    • 0035036999 scopus 로고    scopus 로고
    • What information do parents of newborns with cleft lip, palate, or both want to know?
    • DOI 10.1597/1545-1569(2001)038<0055:WIDPON>2.0.CO;2
    • Young JL, O'Riordan M, Goldstein JA, Robin NH. What information do parents of newborns with cleft lip, palate, or both want to know? Cleft Palate Craniofac J. 2001;38:55-58. (Pubitemid 32436177)
    • (2001) Cleft Palate-Craniofacial Journal , vol.38 , Issue.1 , pp. 55-58
    • Young, J.L.1    O'Riordan, M.2    Goldstein, J.A.3    Robin, N.H.4


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.