메뉴 건너뛰기




Volumn 21, Issue 6, 2011, Pages 771-782

The psychosocial impact of Epidermolysis bullosa

Author keywords

disfigurement; experiences; exploratory methods; hereditary diseases; illness and disease; interviews; psychosocial issues; semistructured

Indexed keywords

ADULT; AGED; ARTICLE; EPIDERMOLYSIS BULLOSA; FEMALE; HUMAN; HUMAN RELATION; INTERVIEW; MALE; MIDDLE AGED; PSYCHOLOGICAL ASPECT; SOCIAL BEHAVIOR;

EID: 79955627783     PISSN: 10497323     EISSN: 15527557     Source Type: Journal    
DOI: 10.1177/1049732311400431     Document Type: Article
Times cited : (57)

References (50)
  • 1
    • 72449131085 scopus 로고    scopus 로고
    • Men who have sex with men account for nonuse of condoms
    • Adams, J., & Neville, S. (2009). Men who have sex with men account for nonuse of condoms. Qualitative Health Research, 19, 1669-1677. doi:10.1177/1049732309353046
    • (2009) Qualitative Health Research , vol.19 , pp. 1669-1677
    • Adams, J.1    Neville, S.2
  • 3
    • 84993783337 scopus 로고    scopus 로고
    • Thematic networks: An analytic tool for qualitative research
    • Attride-Stirling, J. (2001). Thematic networks: An analytic tool for qualitative research. Qualitative Research, 1 (3). 385-405. doi:10.1177/ 146879410100100307
    • (2001) Qualitative Research , vol.1 , Issue.3 , pp. 385-405
    • Attride-Stirling, J.1
  • 6
    • 33750505977 scopus 로고    scopus 로고
    • Using thematic analysis in psychology
    • Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77-101. doi:10.1191/ 1478088706qp063oa
    • (2006) Qualitative Research in Psychology , vol.3 , pp. 77-101
    • Braun, V.1    Clarke, V.2
  • 7
    • 79955596316 scopus 로고    scopus 로고
    • The space between: On being an insider/outsider in qualitative research
    • Corbin Dwyer, S., & Buckle, J. (2009). The space between: On being an insider/outsider in qualitative research. International Journal of Qualitative Methods, 8 (1) 54-63.
    • (2009) International Journal of Qualitative Methods , vol.8 , Issue.1 , pp. 54-63
    • Corbin Dwyer, S.1    Buckle, J.2
  • 8
    • 0038515494 scopus 로고    scopus 로고
    • Peer support within a health care context: A concept analysis
    • Dennis, J. (2003). Peer support within a health care context: A concept analysis. International Journal of Nursing Studies, 240, 321-332. doi:10.1016/S0020-7489(02)00092-5
    • (2003) International Journal of Nursing Studies , vol.240 , pp. 321-332
    • Dennis, J.1
  • 10
    • 79955585542 scopus 로고    scopus 로고
    • Supporting people with long term conditions to self care
    • Department of Health
    • Department of Health. (2007). Supporting people with long term conditions to self care. Gateway reference 5411. Retrieved from http://www.dh.gov.uk/en/ Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/Browsable/ DH-4130991
    • (2007) Gateway Reference , vol.5411
  • 12
    • 33645070570 scopus 로고    scopus 로고
    • The lived body as experience and perspective: Methodological challenges
    • DOI 10.1177/1468794105054455
    • Engelsrud, G. (2005). The lived body as experience and perspective: Methodological challenges. Qualitative Research 5 (3). 267-284. doi:10.1177/1468794105054455 (Pubitemid 43423298)
    • (2005) Qualitative Research , vol.5 , Issue.3 , pp. 267-284
    • Engelsrud, G.1
  • 13
    • 33847330347 scopus 로고    scopus 로고
    • Demonstrating rigor using thematic analysis: A hybrid approach of inductive and deductive coding and theme development
    • Fereday, J., & Muir-Cochrane, E. (2006). Demonstrating rigor using thematic analysis: A hybrid approach of inductive and deductive coding and theme development. International Journal of Qualitative Methods, 5 (1). 1-11. Retrieved from http:// www.ualberta.ca/∼iiqm/backissues/5-1/pdf/fereday.pdf
    • (2006) International Journal of Qualitative Methods , vol.5 , Issue.1 , pp. 1-11
    • Fereday, J.1    Muir-Cochrane, E.2
  • 14
    • 18944376080 scopus 로고    scopus 로고
    • Impact of inherited epidermolysis bullosa on parental interpersonal relationships, marital status and family size
    • DOI 10.1111/j.1365-2133.2004.06339.x
    • Fine, J.D., Johnson, L.B., Weiner, M., & Suchindran, C. (2005). Impact of inherited epidermolysis bullosa on parental interpersonal relationships, marital status and family size. British Journal of Dermatology, 152 (5). 1009-1014. doi:10.1111/ j.1365-2133.2004.06339.x (Pubitemid 40704944)
    • (2005) British Journal of Dermatology , vol.152 , Issue.5 , pp. 1009-1014
    • Fine, J.-D.1    Johnson, L.B.2    Weiner, M.3    Suchindran, C.4
  • 16
    • 34147092510 scopus 로고    scopus 로고
    • Doing synchronous online focus groups with young people: Methodological reflections
    • DOI 10.1177/1049732306298754
    • Fox, F.E., Morris, M., & Rumsey, N. (2007). Doing synchronous online focus groups with young people: Methodological reflections. Qualitative Health Research, 17, 539-547. doi:10.1177/1049732306298754 (Pubitemid 46563228)
    • (2007) Qualitative Health Research , vol.17 , Issue.4 , pp. 539-547
    • Fox, F.E.1    Morris, M.2    Rumsey, N.3
  • 17
    • 70450277403 scopus 로고    scopus 로고
    • Quality of life measurements in epidermolysis bullosa: Tools for clinical research and patient care
    • Frew, J.W., & Murrell, D.F. (2010). Quality of life measurements in epidermolysis bullosa: Tools for clinical research and patient care. Dermatologic Clinics, 28 (1). doi:10.1016/ j.det.2009.10.019
    • (2010) Dermatologic Clinics , vol.28 , Issue.1
    • Frew, J.W.1    Murrell, D.F.2
  • 18
    • 2342592713 scopus 로고    scopus 로고
    • Patient empowerment
    • Funnell, M. (2004). Patient empowerment. Critical Care Nursing Quarterly, 27 (2) 201-204. (Pubitemid 38569195)
    • (2004) Critical Care Nursing Quarterly , vol.27 , Issue.2 , pp. 201-204
    • Funnell, M.M.1
  • 19
    • 16544387950 scopus 로고    scopus 로고
    • Epidermolysis bullosa: Pathophysiology and nursing care
    • Gannon, B. (2004). Epidermolysis bullosa: Pathophysiology and nursing care. Neonatal Network, 23 (6). 25-32.
    • (2004) Neonatal Network , vol.23 , Issue.6 , pp. 25-32
    • Gannon, B.1
  • 20
    • 12344273443 scopus 로고    scopus 로고
    • Health information-seeking behaviour in adolescence: The place of the internet
    • DOI 10.1016/j.socscimed.2004.08.010, PII S0277953604003934
    • Gray, N., Klein, J., Noyce, P., Sesselberg, T., & Cantrill, A. (2005). Health information-seeking behavior in adolescence: The place of the Internet. Social Science & Medicine, 60 (7). 1467-1478. doi:10.1016/j. socscimed.2004.08.010 (Pubitemid 40126433)
    • (2005) Social Science and Medicine , vol.60 , Issue.7 , pp. 1467-1478
    • Gray, N.J.1    Klein, J.D.2    Noyce, P.R.3    Sesselberg, T.S.4    Cantrill, J.A.5
  • 21
    • 33744934008 scopus 로고    scopus 로고
    • Internet recruitment and e-mail interviews in qualitative studies
    • DOI 10.1177/1049732306287599
    • Hamilton, R., & Bowers, J. (2006). Internet recruitment and e-mail interviews in qualitative studies. Qualitative Health Research, 16, 821-835. doi:10.1177/1049732306287599 (Pubitemid 43842304)
    • (2006) Qualitative Health Research , vol.16 , Issue.6 , pp. 821-835
    • Hamilton, R.J.1    Bowers, B.J.2
  • 23
    • 36749058493 scopus 로고    scopus 로고
    • Overview of peer support models to improve diabetes self-management and clinical outcomes
    • DOI 10.2337/diaspect.20.4.214
    • Heisler, M. (2007). Overview of peer support models to improve diabetes self-management and clinical outcomes. Diabetes Spectrum, 20, 214-221. doi:10.2337/diaspect.20.4.214 (Pubitemid 350206596)
    • (2007) Diabetes Spectrum , vol.20 , Issue.4 , pp. 214-221
    • Heisler, M.1
  • 24
    • 0036281120 scopus 로고    scopus 로고
    • Epidermolysis bullosa in children: Pathophysiology, anaesthesia and pain management
    • DOI 10.1046/j.1460-9592.2002.00768.x
    • Herod, J., Denyer, J., Goldman, A., & Howard, R. (2002). Epidermolysis bullosa in children: Pathophysiology, anaesthesia and pain management. Paediatric Anaesthetics, 12, 388-397. doi:10.1046/j.1460-9592.2002. 00768.x (Pubitemid 34639459)
    • (2002) Paediatric Anaesthesia , vol.12 , Issue.5 , pp. 388-397
    • Herod, J.1    Denyer, J.2    Goldman, A.3    Howard, R.4
  • 25
    • 34848845803 scopus 로고    scopus 로고
    • Ethical components of researcher-researched relationships in qualitative interviewing
    • DOI 10.1177/1049732307308305
    • Hewitt, J. (2007). Ethical components of researcher-researched relationships in qualitative interviewing. Qualitative Health Research, 17, 1149-1159. doi:10.1177/1049732307308305 (Pubitemid 47491367)
    • (2007) Qualitative Health Research , vol.17 , Issue.8 , pp. 1149-1159
    • Hewitt, J.1
  • 27
    • 0036454780 scopus 로고    scopus 로고
    • Quality of life in epidermolysis bullosa
    • DOI 10.1046/j.1365-2230.2002.01121.x
    • Horn, H., & Tidman, M. (2002). Quality of life in epidermolysis bullosa. Clinical and Experimental Dermatology, 27, 707. doi:10.1046/j.1365- 2230.2002.01121.x (Pubitemid 35454237)
    • (2002) Clinical and Experimental Dermatology , vol.27 , Issue.8 , pp. 707-710
    • Horn, H.M.1    Tidman, M.J.2
  • 28
    • 36249017785 scopus 로고    scopus 로고
    • A practical guide to the e-mail interview
    • DOI 10.1177/1049732307308761
    • Hunt, N., & McHale, S. (2007). A practical guide to the e-mail interview. Qualitative Health Research, 17, 1415-1421. doi:10.1177/ 1049732307308761 (Pubitemid 350130663)
    • (2007) Qualitative Health Research , vol.17 , Issue.10 , pp. 1415-1421
    • Hunt, N.1    McHale, S.2
  • 29
    • 52449098282 scopus 로고    scopus 로고
    • Inherited epidermolysis bullosa: This dermal disease is beyond skin deep
    • Keefe, R. (2008). Inherited epidermolysis bullosa: This dermal disease is beyond skin deep. Journal of the American Academy of Physician Assistants, 21 (7). 22-27. Retrieved from http://www.jaapa.com/inherited-epidermolysis-bullosa- this-dermal-disease-is-beyond-skin-deep/article/124080/
    • (2008) Journal of the American Academy of Physician Assistants , vol.21 , Issue.7 , pp. 22-27
    • Keefe, R.1
  • 30
    • 9144252606 scopus 로고    scopus 로고
    • Chronic illness self-management: Locating the 'self'
    • DOI 10.1111/j.1365-2648.2004.03237.x
    • Koch, T., Jenkin, P., & Kralik, D. (2004). Chronic illness self-management: Locating the 'self.' Journal of Advanced Nursing, 48 (5). 484-492. doi:10.1111/j.1365-2648.2004.03237.x (Pubitemid 39540308)
    • (2004) Journal of Advanced Nursing , vol.48 , Issue.5 , pp. 484-492
    • Koch, T.1    Jenkin, P.2    Kralik, D.3
  • 32
    • 70350005215 scopus 로고    scopus 로고
    • "Making it all normal": The role of the Internet in problematic pregnancy
    • Lowe, P., Powell, J., Griffiths, F., Thorogood, M., & Locock, L. (2009). "Making it all normal": The role of the Internet in problematic pregnancy. Qualitative Health Research, 19, 1476-1484. doi:10.1177/1049732309348368
    • (2009) Qualitative Health Research , vol.19 , pp. 1476-1484
    • Lowe, P.1    Powell, J.2    Griffiths, F.3    Thorogood, M.4    Locock, L.5
  • 34
    • 0038290690 scopus 로고    scopus 로고
    • The interplay between education and research about patient-provider communication
    • DOI 10.1016/S0738-3991(03)00085-5
    • Makoul, G. (2003). The interplay between education and research about patient-provider communication. Patient Education and Counselling, 50, 79-84. doi:10.1016/S0738-3991(03)00085-5 (Pubitemid 36593245)
    • (2003) Patient Education and Counseling , vol.50 , Issue.1 , pp. 79-84
    • Makoul, G.1
  • 37
    • 48549086539 scopus 로고    scopus 로고
    • Contact at the borderline: Psychoanalytic psychotherapy with EB patients
    • Moss, K. (2008). Contact at the borderline: Psychoanalytic psychotherapy with EB patients. British Journal of Nursing, 17 (7). 449-454.
    • (2008) British Journal of Nursing , vol.17 , Issue.7 , pp. 449-454
    • Moss, K.1
  • 38
    • 21744451841 scopus 로고    scopus 로고
    • The problems with interviews
    • DOI 10.1177/1049732304273903
    • Nunkoosing, K. (2005). The problems with interviews. Qualitative Health Research, 15, 698-706. doi:10.1177/ 1049732304273903 (Pubitemid 41358780)
    • (2005) Qualitative Health Research , vol.15 , Issue.5 , pp. 698-706
    • Nunkoosing, K.1
  • 39
    • 0035220707 scopus 로고    scopus 로고
    • The shifting perspectives model of chronic illness
    • Paterson, B. (2001). The shifting perspectives model of chronic illness. Journal of Nursing Scholarship, 33 (1). 21-26. doi:10.1111/ j.1547-5069.2001. 00021.x (Pubitemid 33613170)
    • (2001) Journal of Nursing Scholarship , vol.33 , Issue.1 , pp. 21-26
    • Paterson, B.L.1
  • 40
    • 0003308890 scopus 로고
    • Designing qualitative studies
    • M. Patton (Ed.), London: Sage
    • Patton, M. (1990). Designing qualitative studies. In M. Patton (Ed.), Qualitative evaluation and research methods (pp. 169-187). London: Sage.
    • (1990) Qualitative Evaluation and Research Methods , pp. 169-187
    • Patton, M.1
  • 41
    • 33947572375 scopus 로고    scopus 로고
    • Adolescents with a chronic condition: Challenges living, challenges treating
    • DOI 10.1016/S0140-6736(07)60370-5, PII S0140673607603705
    • Sawyer, S., Drew, S., Yeo, M., & Britto, M. (2007). Adolescents with a chronic disease: Challenges living, challenges treating. Lancet, 369 (9571). 1481-1489. doi:10.1016/50140-6736(07)60370-5 (Pubitemid 46635756)
    • (2007) Lancet , vol.369 , Issue.9571 , pp. 1481-1489
    • Sawyer, S.M.1    Drew, S.2    Yeo, M.S.3    Britto, M.T.4
  • 43
    • 0034980053 scopus 로고    scopus 로고
    • Adjusting to disfigurement: Processes involved in dealing with being visibly different
    • DOI 10.1016/S0272-7358(00)00056-8, PII S0272735800000568
    • Thompson, A., & Kent, G. (2001). Adjusting to disfigurement: Processes involved in dealing with being visibly different. Clinical Psychology Review, 21 (5). 663-682. doi:10.1016/ 50272-7358(00)00056-8 (Pubitemid 32564934)
    • (2001) Clinical Psychology Review , vol.21 , Issue.5 , pp. 663-682
    • Thompson, A.1    Kent, G.2
  • 44
    • 0033655146 scopus 로고    scopus 로고
    • Two decades of insider research: What we know and don't know about chronic illness experience
    • Thorne, S., & Paterson, B. (2000). Two decades of insider research: What we know and don't know about chronic illness experience. Annual Review of Nursing Research, 18, 3-12.
    • (2000) Annual Review of Nursing Research , vol.18 , pp. 3-12
    • Thorne, S.1    Paterson, B.2
  • 45
    • 7444248879 scopus 로고    scopus 로고
    • Progress in epidermolysis bullosa: Genetic classification and clinical implications
    • DOI 10.1002/ajmg.c.30035
    • Uitto, J., & Richard, G. (2004). Progress in epidermolysis bullosa: Genetic classification and clinical implications. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 131C (1). 61-74. doi:1002/ ajmg.c.30035 (Pubitemid 39441635)
    • (2004) American Journal of Medical Genetics - Seminars in Medical Genetics , vol.131 C , Issue.1 , pp. 61-74
    • Uitto, J.1    Richard, G.2
  • 47
    • 41949104360 scopus 로고    scopus 로고
    • Main problems experienced by children with epidermolysis bullosa: A qualitative study with semi-structured interviews
    • DOI 10.2340/00015555-0376
    • Van Scheppingen, C., Lettinga, A., Duipmans, J., Maathuis, C., & Jonkman, M. (2008 b). Main problems experienced by children with epidermolysis bullosa: A qualitative study with semi-structured interviews. Acta Dermato-Venereologica, 88 (2). 143-150. doi:10.2340/00015555-0376 (Pubitemid 351507186)
    • (2008) Acta Dermato-Venereologica , vol.88 , Issue.2 , pp. 143-150
    • Van Scheppingen, C.1    Lettinga, A.T.2    Duipmans, J.C.3    Maathuis, C.G.B.4    Jonkman, M.F.5
  • 48
    • 0011816661 scopus 로고    scopus 로고
    • Improving chronic illness care: Translating evidence into action
    • DOI 10.1377/hlthaff.20.6.64
    • Wagner, E., Austin, B., Davis, C., Hindmarsh, M., Schaefer, J., & Bonomi, A. (2001). Improving chronic illness care: Translating evidence into action. Health Affairs, 20 (6). 64-78. (Pubitemid 33707442)
    • (2001) Health Affairs , vol.20 , Issue.6 , pp. 64-78
    • Wagner, E.H.1    Austin, B.T.2    Davis, C.3    Hindmarsh, M.4    Schaefer, J.5    Bonomi, A.6
  • 49
    • 0035348551 scopus 로고    scopus 로고
    • A policy analysis of the Expert Patient in the United Kingdom: Self-care as an expression of pastoral power?
    • DOI 10.1046/j.1365-2524.2001.00289.x
    • Wilson, P. (2001). A policy analysis of the expert patient in the United Kingdom: Self-care as an expression of pastoral power? Health & Social Care in the Community, 9 (3). 134-142. doi:10.1046/j.1365-2524.2001.00289.x (Pubitemid 33696567)
    • (2001) Health and Social Care in the Community , vol.9 , Issue.3 , pp. 134-142
    • Wilson, P.M.1
  • 50
    • 18744406706 scopus 로고    scopus 로고
    • The psychological and social burdens of psoriasis
    • Young, M. (2005). The psychological and social burdens of psoriasis. Dermatology Nursing, 17 (1). 15-19.
    • (2005) Dermatology Nursing , vol.17 , Issue.1 , pp. 15-19
    • Young, M.1


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.