메뉴 건너뛰기




Volumn 133, Issue 6, 2014, Pages

Children's experiences of cystic fibrosis: A systematic review of qualitative studies

Author keywords

Adolescent; Cystic fibrosis; Pediatrics; Qualitative research; Systematic review

Indexed keywords

ATTITUDE TO LIFE; BODY IMAGE; CHILD; COPING BEHAVIOR; CYSTIC FIBROSIS; DISEASE SEVERITY; DOCTOR PATIENT RELATION; EMOTIONALITY; FINANCIAL DEFICIT; HIGH RISK BEHAVIOR; HUMAN; INDEPENDENCE; LIFESTYLE MODIFICATION; MOTIVATION; OPTIMISM; PATIENT CARE; PERSONAL EXPERIENCE; PHYSICAL CAPACITY; PRIORITY JOURNAL; QUALITATIVE RESEARCH; QUALITY OF LIFE; RESPONSIBILITY; REVIEW; SELF CONTROL; SOCIAL ISOLATION; SOCIAL SUPPORT; SYSTEMATIC REVIEW; TIME PERCEPTION;

EID: 84901829032     PISSN: 00314005     EISSN: 10984275     Source Type: Journal    
DOI: 10.1542/peds.2014-0009     Document Type: Review
Times cited : (87)

References (97)
  • 1
    • 0035746363 scopus 로고    scopus 로고
    • Laboratory standards and guidelines for population-based cystic fibrosis carrier screening
    • Subcommittee on Cystic Fibrosis Screening, Accreditation of Genetic Services Committee, ACMG. American College of Medical Genetics
    • Grody WW, Cutting GR, Klinger KW, Richards CS, Watson MS, Desnick RJ; Subcommittee on Cystic Fibrosis Screening, Accreditation of Genetic Services Committee, ACMG. American College of Medical Genetics. Laboratory standards and guidelines for population-based cystic fibrosis carrier screening. Genet Med. 2001;3(2):149-154
    • (2001) Genet Med , vol.3 , Issue.2 , pp. 149-154
    • Grody, W.W.1    Cutting, G.R.2    Klinger, K.W.3    Richards, C.S.4    Watson, M.S.5    Desnick, R.J.6
  • 2
    • 33947141892 scopus 로고    scopus 로고
    • Guidelines for implementation of cystic fibrosis newborn screening programs: Cystic Fibrosis Foundation workshop report
    • Cystic Fibrosis Foundation. Available at
    • Comeau AM, Accurso FJ, White TB, et al Cystic Fibrosis Foundation. Guidelines for implementation of cystic fibrosis newborn screening programs: Cystic Fibrosis Foundation workshop report. Pediatrics. 2007;119(2). Available at: www.pediatrics.org/cgi/content/full/119/2/e495
    • (2007) Pediatrics , vol.119 , Issue.2
    • Comeau, A.M.1    Accurso, F.J.2    White, T.B.3
  • 3
    • 84856541302 scopus 로고    scopus 로고
    • Comparison of the US and Australian cystic fibrosis registries: The impact of newborn screening
    • Available at
    • Martin B, Schechter MS, Jaffe A, Cooper P, Bell SC, Ranganathan S. Comparison of the US and Australian cystic fibrosis registries: the impact of newborn screening. Pediatrics. 2012;129(2). Available at: www.pediatrics.org/ cgi/content/full/129/2/e348
    • (2012) Pediatrics , vol.129 , Issue.2
    • Martin, B.1    Schechter, M.S.2    Jaffe, A.3    Cooper, P.4    Bell, S.C.5    Ranganathan, S.6
  • 4
    • 37749013600 scopus 로고    scopus 로고
    • Cystic fibrosis
    • Davies JC, Alton EWFW, Bush A. Cystic fibrosis. BMJ. 2007;335(7632):1255- 1259
    • (2007) BMJ , vol.335 , Issue.7632 , pp. 1255-1259
    • Davies, J.C.1    Alton, E.W.F.W.2    Bush, A.3
  • 5
    • 0024841594 scopus 로고
    • Cystic fibrosis - From lung damage to symptoms
    • discussion 56-57
    • Geddes DM, Shiner R. Cystic fibrosis - from lung damage to symptoms. Acta Paediatr Scand Suppl. 1989;363:52-56, discussion 56-57
    • (1989) Acta Paediatr Scand Suppl , vol.363 , pp. 52-56
    • Geddes, D.M.1    Shiner, R.2
  • 6
    • 46149097167 scopus 로고    scopus 로고
    • What's new in cystic fibrosis? From treating symptoms to correction of the basic defect
    • Proesmans M, Vermeulen F, De Boeck K. What's new in cystic fibrosis? From treating symptoms to correction of the basic defect. Eur J Pediatr. 2008;167(8):839-849
    • (2008) Eur J Pediatr , vol.167 , Issue.8 , pp. 839-849
    • Proesmans, M.1    Vermeulen, F.2    De Boeck, K.3
  • 7
    • 0037390820 scopus 로고    scopus 로고
    • Median household income and mortality rate in cystic fibrosis
    • Available at
    • O'Connor GT, Quinton HB, Kneeland T, et al. Median household income and mortality rate in cystic fibrosis. Pediatrics. 2003;111 (4 Pt 1). Available at: www.pediatrics.org/cgi/content/full/111/4/e333
    • (2003) Pediatrics , vol.111 , Issue.4 PART 1
    • O'Connor, G.T.1    Quinton, H.B.2    Kneeland, T.3
  • 9
    • 84857433891 scopus 로고    scopus 로고
    • Association between socioeconomic status, sex, and age at death from cystic fibrosis in England and Wales (1959 to 2008): Cross sectional study
    • Barr HL, Britton J, Smyth AR, Fogarty AW. Association between socioeconomic status, sex, and age at death from cystic fibrosis in England and Wales (1959 to 2008): cross sectional study. BMJ. 2011;343:d4662
    • (2011) BMJ , vol.343
    • Barr, H.L.1    Britton, J.2    Smyth, A.R.3    Fogarty, A.W.4
  • 11
    • 71749099852 scopus 로고    scopus 로고
    • Problems with sleep, eating, and adherence to therapy are common among children with cystic fibrosis
    • Bayer JK, Nicholson JM. Problems with sleep, eating, and adherence to therapy are common among children with cystic fibrosis. J Pediatr. 2009;155(5):759-760
    • (2009) J Pediatr , vol.155 , Issue.5 , pp. 759-760
    • Bayer, J.K.1    Nicholson, J.M.2
  • 12
    • 0028230118 scopus 로고
    • Mental disorders in chronically ill children: Case identification and parent-child discrepancy
    • Canning EH. Mental disorders in chronically ill children: case identification and parentchild discrepancy. Psychosom Med. 1994;56(2):104-108 (Pubitemid 24106673)
    • (1994) Psychosomatic Medicine , vol.56 , Issue.2 , pp. 104-108
    • Canning, E.H.1
  • 14
    • 0028504726 scopus 로고
    • Measurement of quality of well being in a child and adolescent cystic fibrosis population
    • Czyzewski DI, Mariotto MJ, Bartholomew LK, LeCompte SH, Sockrider MM. Measurement of quality of well being in a child and adolescent cystic fibrosis population. Med Care. 1994;32(9):965-972
    • (1994) Med Care , vol.32 , Issue.9 , pp. 965-972
    • Czyzewski, D.I.1    Mariotto, M.J.2    Bartholomew, L.K.3    LeCompte, S.H.4    Sockrider, M.M.5
  • 15
    • 20944441623 scopus 로고    scopus 로고
    • Psychological and family functioning and quality of life in adolescents with cystic fibrosis
    • DOI 10.1016/j.jcf.2005.02.004, PII S1569199305000317
    • Szyndler JE, Towns SJ, van Asperen PP, McKay KO. Psychological and family functioning and quality of life in adolescents with cystic fibrosis. J Cyst Fibros. 2005;4(2):135-144 (Pubitemid 40867764)
    • (2005) Journal of Cystic Fibrosis , vol.4 , Issue.2 , pp. 135-144
    • Szyndler, J.E.1    Towns, S.J.2    Van Asperen, P.P.3    McKay, K.O.4
  • 16
    • 84869862861 scopus 로고    scopus 로고
    • Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ
    • Tong A, Flemming K, McInnes E, Oliver S, Craig J. Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ. BMC Med Res Methodol. 2012;12:181
    • (2012) BMC Med Res Methodol , vol.12 , pp. 181
    • Tong, A.1    Flemming, K.2    McInnes, E.3    Oliver, S.4    Craig, J.5
  • 17
    • 36549063576 scopus 로고    scopus 로고
    • Consolidated criteria for reporting qualitative research (COREQ): A 32-item checklist for interviews and focus groups
    • DOI 10.1093/intqhc/mzm042
    • Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349-357 (Pubitemid 350186969)
    • (2007) International Journal for Quality in Health Care , vol.19 , Issue.6 , pp. 349-357
    • Tong, A.1    Sainsbury, P.2    Craig, J.3
  • 18
    • 47749126232 scopus 로고    scopus 로고
    • Methods for the thematic synthesis of qualitative research in systematic reviews
    • Thomas J, Harden A. Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol. 2008;8:45
    • (2008) BMC Med Res Methodol , vol.8 , pp. 45
    • Thomas, J.1    Harden, A.2
  • 19
    • 0036963242 scopus 로고    scopus 로고
    • Cystic fibrosis and the transition to adulthood
    • DOI 10.1300/J010v36n01-04
    • Palmer ML, Boisen LS. Cystic fibrosis and the transition to adulthood. Soc Work Health Care. 2002;36(1):45-58 (Pubitemid 36119004)
    • (2002) Social Work in Health Care , vol.36 , Issue.1 , pp. 45-58
    • Palmer, M.K.L.1    Boisen, L.S.2
  • 20
    • 34648837908 scopus 로고    scopus 로고
    • Gender Differences in Young Adults' Perceptions of Living With Cystic Fibrosis During the Transition to Adulthood: A Qualitative Investigation
    • DOI 10.1037/1091-7527.25.2.190, PII S1091752707600427
    • Berge JM, Patterson JM, Goetz D, Milla C. Gender differences in young adults' perceptions of living with cystic fi brosis during the transition to adulthood: a qualitative investigation. Fam Syst Health. 2007;25(2):190-203 (Pubitemid 47454591)
    • (2007) Families, Systems and Health , vol.25 , Issue.2 , pp. 190-203
    • Berge, J.M.1    Patterson, J.M.2    Goetz, D.3    Milla, C.4
  • 21
    • 80054738664 scopus 로고    scopus 로고
    • "Down the rabbit hole": Enhancing the transition process for youth with cystic fibrosis and congenital heart disease by re-imagining the future and time
    • Moola FJ, Norman ME. "Down the rabbit hole": enhancing the transition process for youth with cystic fibrosis and congenital heart disease by re-imagining the future and time. Child Care Health Dev. 2011;37(6):841-851
    • (2011) Child Care Health Dev , vol.37 , Issue.6 , pp. 841-851
    • Moola, F.J.1    Norman, M.E.2
  • 22
    • 79954623878 scopus 로고    scopus 로고
    • Understanding needle-related distress in children with cystic fibrosis
    • Ayers S, Muller I, Mahoney L, Seddon P. Understanding needle-related distress in children with cystic fibrosis. Br J Health Psychol. 2011;16(Pt 2):329-343
    • (2011) Br J Health Psychol , vol.16 , Issue.PART 2 , pp. 329-343
    • Ayers, S.1    Muller, I.2    Mahoney, L.3    Seddon, P.4
  • 23
    • 83455177584 scopus 로고    scopus 로고
    • "No time to play": Perceptions toward physical activity in youth with cystic fibrosis
    • Moola FJ, Faulkner GE, Schneiderman JE. "No time to play": perceptions toward physical activity in youth with cystic fibrosis. Adapt Phys Activ Q. 2012;29(1):44-62
    • (2012) Adapt Phys Activ Q , vol.29 , Issue.1 , pp. 44-62
    • Moola, F.J.1    Faulkner, G.E.2    Schneiderman, J.E.3
  • 24
    • 0010372589 scopus 로고    scopus 로고
    • Growing up with a Chronic Health Condition: A Model of an Ordinary Lifestyle
    • Admi H. Growing up with a chronic health condition: a model of an ordinary lifestyle. Qual Health Res. 1996;6(2):163-183 (Pubitemid 126445206)
    • (1996) Cardiovascular Pathobiology , vol.1 , Issue.3-4 , pp. 163-183
    • Admi, H.1
  • 25
  • 26
    • 0034203667 scopus 로고    scopus 로고
    • The company they keep: The influence of peer relationships on adjustment to cystic fibrosis during adolescence
    • D'Auria JP, Christian BJ, Henderson ZG, Haynes B. The company they keep: the influence of peer relationships on adjustment to cystic fibrosis during adolescence. J Pediatr Nurs. 2000;15(3):175-182
    • (2000) J Pediatr Nurs , vol.15 , Issue.3 , pp. 175-182
    • D'Auria, J.P.1    Christian, B.J.2    Henderson, Z.G.3    Haynes, B.4
  • 27
    • 84861911924 scopus 로고    scopus 로고
    • Supporting cystic fibrosis disease management during adolescence: The role of family and friends
    • Barker DH, Driscoll KA, Modi AC, Light MJ, Quittner AL. Supporting cystic fibrosis disease management during adolescence: the role of family and friends. Child Care Health Dev. 2012;38(4):497-504
    • (2012) Child Care Health Dev , vol.38 , Issue.4 , pp. 497-504
    • Barker, D.H.1    Driscoll, K.A.2    Modi, A.C.3    Light, M.J.4    Quittner, A.L.5
  • 28
    • 77955235610 scopus 로고    scopus 로고
    • Child and parent perceptions of monitoring in chronic illness management: A qualitative study
    • Hafetz J, Miller VA. Child and parent perceptions of monitoring in chronic illness management: a qualitative study. Child Care Health Dev. 2010;36(5):655-662
    • (2010) Child Care Health Dev , vol.36 , Issue.5 , pp. 655-662
    • Hafetz, J.1    Miller, V.A.2
  • 29
    • 84866491228 scopus 로고    scopus 로고
    • Parenting adolescents with cystic fibrosis: The adolescents' and young adults' perspectives
    • Bregnballe V, Schiøtz PO, Lomborg K. Parenting adolescents with cystic fibrosis: the adolescents' and young adults' perspectives. Patient Prefer Adherence. 2011;5:563-570
    • (2011) Patient Prefer Adherence , vol.5 , pp. 563-570
    • Bregnballe, V.1    Schiøtz, P.O.2    Lomborg, K.3
  • 30
    • 0031065510 scopus 로고    scopus 로고
    • The child's eye: Memories of growing up with cystic fibrosis
    • Christian BJ, D'Auria JP. The child's eye: memories of growing up with cystic fibrosis. J Pediatr Nurs. 1997;12(1):3-12
    • (1997) J Pediatr Nurs , vol.12 , Issue.1 , pp. 3-12
    • Christian, B.J.1    D'Auria, J.P.2
  • 31
    • 0642383612 scopus 로고
    • Stress and coping responses of adolescents with cystic fibrosis
    • Patton AC, Ventura JN, Savedra M. Stress and coping responses of adolescents with cystic fibrosis. Child Health Care. 1986;14(3):153-159
    • (1986) Child Health Care , vol.14 , Issue.3 , pp. 153-159
    • Patton, A.C.1    Ventura, J.N.2    Savedra, M.3
  • 32
    • 33646009644 scopus 로고    scopus 로고
    • Segregation: The perspectives of young patients and their parents
    • Russo K, Donnelly M, Reid AJM. Segregation: the perspectives of young patients and their parents. J Cyst Fibros. 2006;5(2):93-99
    • (2006) J Cyst Fibros , vol.5 , Issue.2 , pp. 93-99
    • Russo, K.1    Donnelly, M.2    Reid, A.J.M.3
  • 33
    • 0019412839 scopus 로고
    • Adolescents with cystic fibrosis: Psychosocial adjustment
    • Bywater EM. Adolescents with cystic fibrosis: psychosocial adjustment. Arch Dis Child. 1981;56(7):538-543 (Pubitemid 11053064)
    • (1981) Archives of Disease in Childhood , vol.56 , Issue.7 , pp. 538-543
    • Bywater, E.M.1
  • 34
    • 84872174312 scopus 로고    scopus 로고
    • Child to adult: Transitional care for young adults with cystic fibrosis
    • Al-Yateem N. Child to adult: transitional care for young adults with cystic fibrosis. Br J Nurs. 2012;21(14):850-854
    • (2012) Br J Nurs , vol.21 , Issue.14 , pp. 850-854
    • Al-Yateem, N.1
  • 36
    • 0034873470 scopus 로고    scopus 로고
    • Gendered embodiment and survival for young people with cystic fibrosis
    • PII S0277953600004160
    • Willis E, Miller R, Wyn J. Gendered embodiment and survival for young people with cystic fibrosis. Soc Sci Med. 2001;53(9):1163-1174 (Pubitemid 32758759)
    • (2001) Social Science and Medicine , vol.53 , Issue.9 , pp. 1163-1174
    • Willis, E.1    Miller, R.2    Wyn, J.3
  • 37
    • 0033122542 scopus 로고    scopus 로고
    • Playing for time: Adolescent perspectives of lung transplantation for cystic fibrosis
    • Christian BJ, D'Auria JP, Moore CB. Playing for time: adolescent perspectives of lung transplantation for cystic fibrosis. J Pediatr Health Care. 1999;13(3 pt 1):120-125
    • (1999) J Pediatr Health Care , vol.13 , Issue.3 PART 1 , pp. 120-125
    • Christian, B.J.1    D'Auria, J.P.2    Moore, C.B.3
  • 38
    • 33746729915 scopus 로고    scopus 로고
    • Living in limbo: Patients with cystic fibrosis waiting for transplant
    • Macdonald K. Living in limbo: patients with cystic fibrosis waiting for transplant. Br J Nurs. 2006;15(10):566-572
    • (2006) Br J Nurs , vol.15 , Issue.10 , pp. 566-572
    • Macdonald, K.1
  • 39
    • 33747616837 scopus 로고    scopus 로고
    • Effect of disease-related pain on the health-related quality of life of children and adolescents with cystic fibrosis
    • DOI 10.1097/01.ajp.0000210996.45459.76, PII 0000250820060700000005
    • Palermo TM, Harrison D, Koh JL. Effect of disease-related pain on the health-related quality of life of children and adolescents with cystic fibrosis. Clin J Pain. 2006;22(6):532-537 (Pubitemid 44350438)
    • (2006) Clinical Journal of Pain , vol.22 , Issue.6 , pp. 532-537
    • Palermo, T.M.1    Harrison, D.2    Koh, J.L.3
  • 40
    • 77949485989 scopus 로고    scopus 로고
    • Health-related quality of life across pediatric chronic conditions
    • Ingerski LM, Modi AC, Hood KK, et al. Health-related quality of life across pediatric chronic conditions. J Pediatr. 2010;156(4):639-644
    • (2010) J Pediatr , vol.156 , Issue.4 , pp. 639-644
    • Ingerski, L.M.1    Modi, A.C.2    Hood, K.K.3
  • 41
    • 84872360686 scopus 로고    scopus 로고
    • Health-related quality of life of Spanish children with cystic fibrosis
    • Groeneveld IF, Sosa ES, Pérez M, et al. Health-related quality of life of Spanish children with cystic fibrosis. Qual Life Res. 2012;21(10):1837-1845
    • (2012) Qual Life Res , vol.21 , Issue.10 , pp. 1837-1845
    • Groeneveld, I.F.1    Sosa, E.S.2    Pérez, M.3
  • 42
    • 72549116378 scopus 로고    scopus 로고
    • Health-related quality of life in children with cystic fibrosis: Validation of the German CFQ-R
    • Schmidt A, Wenninger K, Niemann N, Wahn U, Staab D. Health-related quality of life in children with cystic fibrosis: validation of the German CFQ-R. Health Qual Life Outcomes. 2009;7:97
    • (2009) Health Qual Life Outcomes , vol.7 , pp. 97
    • Schmidt, A.1    Wenninger, K.2    Niemann, N.3    Wahn, U.4    Staab, D.5
  • 43
    • 0021987186 scopus 로고
    • Emotional adjustment of early adolescents with cystic fibrosis
    • Simmons RJ, Corey M, Cowen L, Keenan N, Robertson J, Levison H. Emotional adjustment of early adolescents with cystic fibrosis. Psychosom Med. 1985;47(2):111-122 (Pubitemid 15108844)
    • (1985) Psychosomatic Medicine , vol.47 , Issue.2 , pp. 111-122
    • Simmons, R.J.1    Corey, M.2    Cowen, L.3
  • 44
    • 77957712666 scopus 로고    scopus 로고
    • Effects of gender and age at diagnosis on disease progression in long-term survivors of cystic fibrosis
    • Nick JA, Chacon CS, Brayshaw SJ, et al. Effects of gender and age at diagnosis on disease progression in long-term survivors of cystic fibrosis. Am J Respir Crit Care Med. 2010;182(5):614-626
    • (2010) Am J Respir Crit Care Med , vol.182 , Issue.5 , pp. 614-626
    • Nick, J.A.1    Chacon, C.S.2    Brayshaw, S.J.3
  • 46
    • 33646529103 scopus 로고    scopus 로고
    • Quality-of-life in children and adolescents with cystic fibrosis managed in both regional outreach and cystic fibrosis center settings in Queensland
    • Thomas C, Mitchell P, O'Rourke P, Wainwright C. Quality-of-life in children and adolescents with cystic fibrosis managed in both regional outreach and cystic fibrosis center settings in Queensland. J Pediatr. 2006;148(4):508-516
    • (2006) J Pediatr , vol.148 , Issue.4 , pp. 508-516
    • Thomas, C.1    Mitchell, P.2    O'Rourke, P.3    Wainwright, C.4
  • 47
    • 0242572145 scopus 로고    scopus 로고
    • Quality of life in cystic fibrosis: The impact of gender, general health perceptions and disease severity
    • DOI 10.1016/S1569-1993(03)00093-6, PII S1569199303000936
    • Gee L, Abbott J, Conway SP, Etherington C, Webb AK. Quality of life in cystic fibrosis: the impact of gender, general health perceptions and disease severity. J Cyst Fibros. 2003;2(4):206-213 (Pubitemid 37376499)
    • (2003) Journal of Cystic Fibrosis , vol.2 , Issue.4 , pp. 206-213
    • Gee, L.1    Abbott, J.2    Conway, S.P.3    Etherington, C.4    Webb, A.K.5
  • 48
    • 67049100159 scopus 로고    scopus 로고
    • Quality of life in young people with cystic fibrosis: Effects of hospitalization, age and gender, and differences in parent/child perceptions
    • Hegarty M, Macdonald J, Watter P, Wilson C. Quality of life in young people with cystic fibrosis: effects of hospitalization, age and gender, and differences in parent/child perceptions. Child Care Health Dev. 2009;35(4):462-468
    • (2009) Child Care Health Dev , vol.35 , Issue.4 , pp. 462-468
    • Hegarty, M.1    Macdonald, J.2    Watter, P.3    Wilson, C.4
  • 49
    • 84872675202 scopus 로고    scopus 로고
    • Longitudinal association between lung function and health-related quality of life in cystic fibrosis
    • Abbott J, Hurley MA, Morton AM, Conway SP. Longitudinal association between lung function and health-related quality of life in cystic fibrosis. Thorax. 2013;68(2):149-154
    • (2013) Thorax , vol.68 , Issue.2 , pp. 149-154
    • Abbott, J.1    Hurley, M.A.2    Morton, A.M.3    Conway, S.P.4
  • 50
    • 84865582096 scopus 로고    scopus 로고
    • Children's experiences of living with juvenile idiopathic arthritis: A thematic synthesis of qualitative studies
    • Tong A, Jones J, Craig JC, Singh-Grewal D. Children's experiences of living with juvenile idiopathic arthritis: a thematic synthesis of qualitative studies. Arthritis Care Res (Hoboken) . 2012;64(9):1392-1404
    • (2012) Arthritis Care Res (Hoboken) , vol.64 , Issue.9 , pp. 1392-1404
    • Tong, A.1    Jones, J.2    Craig, J.C.3    Singh-Grewal, D.4
  • 51
    • 0032134959 scopus 로고    scopus 로고
    • Adolescents' perspectives of chronic illness: "it's hard."
    • Woodgate RL. Adolescents' perspectives of chronic illness: "it's hard." J Pediatr Nurs. 1998;13(4):210-223
    • (1998) J Pediatr Nurs , vol.13 , Issue.4 , pp. 210-223
    • Woodgate, R.L.1
  • 52
    • 84874116174 scopus 로고    scopus 로고
    • Experiences and perspectives of adolescents and young adults with advanced CKD
    • Tong A, Henning P, Wong G, et al. Experiences and perspectives of adolescents and young adults with advanced CKD. Am J Kidney Dis. 2013;61(3):375-384
    • (2013) Am J Kidney Dis , vol.61 , Issue.3 , pp. 375-384
    • Tong, A.1    Henning, P.2    Wong, G.3
  • 53
    • 84860350984 scopus 로고    scopus 로고
    • Children's experiences of dialysis: A systematic review of qualitative studies
    • Tjaden L, Tong A, Henning P, Groothoff J, Craig JC. Children's experiences of dialysis: a systematic review of qualitative studies. Arch Dis Child. 2012;97(5):395-402
    • (2012) Arch Dis Child , vol.97 , Issue.5 , pp. 395-402
    • Tjaden, L.1    Tong, A.2    Henning, P.3    Groothoff, J.4    Craig, J.C.5
  • 54
    • 84927794971 scopus 로고    scopus 로고
    • The everyday life of the young child shortly after receiving a cancer diagnosis, from both children's and parent's perspectives
    • published online ahead of print January 8, 2014
    • Darcy L, Knutsson S, Huus K, Enskar K. The everyday life of the young child shortly after receiving a cancer diagnosis, from both children's and parent's perspectives (published online ahead of print January 8, 2014). Cancer Nurs. 2014.
    • (2014) Cancer Nurs
    • Darcy, L.1    Knutsson, S.2    Huus, K.3    Enskar, K.4
  • 55
    • 77950641357 scopus 로고    scopus 로고
    • Adolescents' and parents' experiences of managing the psychosocial impact of appearance change during cancer treatment
    • Williamson H, Harcourt D, Halliwell E, Frith H, Wallace M. Adolescents' and parents' experiences of managing the psychosocial impact of appearance change during cancer treatment. J Pediatr Oncol Nurs. 2010;27(3):168-175
    • (2010) J Pediatr Oncol Nurs , vol.27 , Issue.3 , pp. 168-175
    • Williamson, H.1    Harcourt, D.2    Halliwell, E.3    Frith, H.4    Wallace, M.5
  • 56
    • 60549094287 scopus 로고    scopus 로고
    • "There's nothing I can't do - I just put my mind to anything and I can do it": A qualitative analysis of how children with chronic disease and their parents account for and manage physical activity
    • Fereday J, MacDougall C, Spizzo M, Darbyshire P, Schiller W. "There's nothing I can't do - I just put my mind to anything and I can do it": a qualitative analysis of how children with chronic disease and their parents account for and manage physical activity. BMC Pediatr. 2009;9(1):1
    • (2009) BMC Pediatr , vol.9 , Issue.1 , pp. 1
    • Fereday, J.1    MacDougall, C.2    Spizzo, M.3    Darbyshire, P.4    Schiller, W.5
  • 57
    • 84877098245 scopus 로고    scopus 로고
    • Shared Pseudomonas aeruginosa genotypes are common in Australian cystic fibrosis centres
    • ACPinCF Investigator Group
    • Kidd TJ, Ramsay KA, Hu H, et al ACPinCF Investigator Group. Shared Pseudomonas aeruginosa genotypes are common in Australian cystic fibrosis centres. Eur Respir J. 2013;41(5):1091-1100
    • (2013) Eur Respir J , vol.41 , Issue.5 , pp. 1091-1100
    • Kidd, T.J.1    Ramsay, K.A.2    Hu, H.3
  • 58
    • 77049109597 scopus 로고    scopus 로고
    • Upper and lower airway cultures in children with cystic fibrosis: Do not neglect the upper airways
    • Bonestroo HJ, de Winter-de Groot KM, van der Ent CK, Arets HG. Upper and lower airway cultures in children with cystic fibrosis: do not neglect the upper airways. J Cyst Fibros. 2010;9(2):130-134
    • (2010) J Cyst Fibros , vol.9 , Issue.2 , pp. 130-134
    • Bonestroo, H.J.1    De Winter-de Groot, K.M.2    Van Der Ent, C.K.3    Arets, H.G.4
  • 59
    • 59449086020 scopus 로고    scopus 로고
    • Models of comprehensive multidisciplinary care for individuals in the United States with genetic disorders
    • Grosse SD, Schechter MS, Kulkarni R, Lloyd-Puryear MA, Strickland B, Trevathan E. Models of comprehensive multidisciplinary care for individuals in the United States with genetic disorders. Pediatrics. 2009;123(1):407-412
    • (2009) Pediatrics , vol.123 , Issue.1 , pp. 407-412
    • Grosse, S.D.1    Schechter, M.S.2    Kulkarni, R.3    Lloyd-Puryear, M.A.4    Strickland, B.5    Trevathan, E.6
  • 60
    • 79957946294 scopus 로고    scopus 로고
    • Managing cystic fibrosis: Strategies that increase life expectancy and improve quality of life
    • Cohen-Cymberknoh M, Shoseyov D, Kerem E. Managing cystic fibrosis: strategies that increase life expectancy and improve quality of life. Am J Respir Crit Care Med. 2011;183(11):1463-1471
    • (2011) Am J Respir Crit Care Med , vol.183 , Issue.11 , pp. 1463-1471
    • Cohen-Cymberknoh, M.1    Shoseyov, D.2    Kerem, E.3
  • 61
    • 0345963017 scopus 로고    scopus 로고
    • Transition Programs in Cystic Fibrosis Centers: Perceptions of Team Members
    • DOI 10.1002/ppul.10391
    • Flume PA, Taylor LA, Anderson DL, Gray S, Turner D. Transition programs in cystic fibrosis centers: perceptions of team members. Pediatr Pulmonol. 2004;37(1):4-7 (Pubitemid 38030063)
    • (2004) Pediatric Pulmonology , vol.37 , Issue.1 , pp. 4-7
    • Flume, P.A.1    Taylor, L.A.2    Anderson, D.L.3    Gray, S.4    Turner, D.5
  • 62
    • 84876511007 scopus 로고    scopus 로고
    • Management issues for adolescents with cystic fibrosis
    • published online ahead of print September 6, 2012
    • Withers AL. Management issues for adolescents with cystic fibrosis (published online ahead of print September 6, 2012). Pulm Med. 2012: 134132
    • (2012) Pulm Med , pp. 134132
    • Withers, A.L.1
  • 63
    • 84882889590 scopus 로고    scopus 로고
    • Adherence to nebulised therapies in adolescents with cystic fibrosis is best on week-days during school term-time
    • Ball R, Southern KW, McCormack P, Duff AJ, Brownlee KG, McNamara PS. Adherence to nebulised therapies in adolescents with cystic fibrosis is best on week-days during school term-time. J Cyst Fibros. 2013;12(5):440-444
    • (2013) J Cyst Fibros , vol.12 , Issue.5 , pp. 440-444
    • Ball, R.1    Southern, K.W.2    McCormack, P.3    Duff, A.J.4    Brownlee, K.G.5    McNamara, P.S.6
  • 64
    • 84866479821 scopus 로고    scopus 로고
    • Barriers to adherence in adolescents and young adults with cystic fibrosis: A questionnaire study in young patients and their parents
    • Bregnballe V, Schiøtz PO, Boisen KA, Pressler T, Thastum M. Barriers to adherence in adolescents and young adults with cystic fibrosis: a questionnaire study in young patients and their parents. Patient Prefer Adherence. 2011;5:507-515
    • (2011) Patient Prefer Adherence , vol.5 , pp. 507-515
    • Bregnballe, V.1    Schiøtz, P.O.2    Boisen, K.A.3    Pressler, T.4    Thastum, M.5
  • 65
    • 84880743301 scopus 로고    scopus 로고
    • "I'm the one taking it": Adolescent participation in chronic disease treatment decisions
    • Lipstein EA, Muething KA, Dodds CM, Britto MT. "I'm the one taking it": adolescent participation in chronic disease treatment decisions. J Adolesc Health. 2013;53(2):253-259
    • (2013) J Adolesc Health , vol.53 , Issue.2 , pp. 253-259
    • Lipstein, E.A.1    Muething, K.A.2    Dodds, C.M.3    Britto, M.T.4
  • 66
    • 72049105548 scopus 로고    scopus 로고
    • Parent-child collaborative decision making for the management of chronic illness: A qualitative analysis
    • Miller VA. Parent-child collaborative decision making for the management of chronic illness: a qualitative analysis. Fam Syst Health. 2009;27(3):249-266
    • (2009) Fam Syst Health , vol.27 , Issue.3 , pp. 249-266
    • Miller, V.A.1
  • 67
    • 67349186656 scopus 로고    scopus 로고
    • Brief report: Accuracy of a 16-item questionnaire based on the HEADSS approach (QBH-16) in the screening of mental disorders in adolescents with behavioral problems in secondary care
    • Hagel LD, Mainieri AS, Zeni CP, Wagner MB. Brief report: accuracy of a 16-item questionnaire based on the HEADSS approach (QBH-16) in the screening of mental disorders in adolescents with behavioral problems in secondary care. J Adolesc. 2009;32(3):753-761
    • (2009) J Adolesc , vol.32 , Issue.3 , pp. 753-761
    • Hagel, L.D.1    Mainieri, A.S.2    Zeni, C.P.3    Wagner, M.B.4
  • 68
    • 84887846638 scopus 로고    scopus 로고
    • A national approach to improving adolescent and young adult (AYA) oncology psychosocial care: The development of AYA-specific psychosocial assessment and care tools
    • Palmer S, Patterson P, Thompson K. A national approach to improving adolescent and young adult (AYA) oncology psychosocial care: the development of AYA-specific psychosocial assessment and care tools. Palliat Support Care. 2013;10:1-6
    • (2013) Palliat Support Care , vol.10 , pp. 1-6
    • Palmer, S.1    Patterson, P.2    Thompson, K.3
  • 69
    • 0031936173 scopus 로고    scopus 로고
    • Approach to assessing adolescents on serious or sensitive issues
    • DOI 10.1016/S0031-3955(05)70589-7
    • Ehrman WG, Matson SC. Approach to assessing adolescents on serious or sensitive issues. Pediatr Clin North Am. 1998;45(1):189-204 (Pubitemid 28093343)
    • (1998) Pediatric Clinics of North America , vol.45 , Issue.1 , pp. 189-204
    • Ehrman, W.G.1    Matson, S.C.2
  • 71
    • 84901826054 scopus 로고    scopus 로고
    • Guidelines for the transition from child to adult cystic fibrosis care
    • Al-Yateem N. Guidelines for the transition from child to adult cystic fibrosis care. Nurs Child Young People. 2013;25(5):29-34
    • (2013) Nurs Child Young People , vol.25 , Issue.5 , pp. 29-34
    • Al-Yateem, N.1
  • 72
    • 0347993833 scopus 로고    scopus 로고
    • Transition Programs in Cystic Fibrosis Centers
    • DOI 10.1002/ppul.10419
    • Conway SP. Transition programs in cystic fibrosis centers. Pediatr Pulmonol. 2004;37(1):1-3 (Pubitemid 38030062)
    • (2004) Pediatric Pulmonology , vol.37 , Issue.1 , pp. 1-3
    • Conway, S.P.1
  • 73
    • 85039777842 scopus 로고    scopus 로고
    • Adolescent experiences in a major metropolitan adult hospital within the inner Sydney area
    • Ly CN. Adolescent experiences in a major metropolitan adult hospital within the inner Sydney area. J Adolesc Health. 2013;52(2 Suppl 1):S111-S112
    • (2013) J Adolesc Health , vol.52 , Issue.2 SUPPL. 1
    • Ly, C.N.1
  • 74
    • 0036897603 scopus 로고    scopus 로고
    • A consensus statement on health care transitions for young adults with special health care needs
    • American Academy of Pediatrics; American Academy of Family Physicians; American College of Physicians-American Society of Internal Medicine
    • American Academy of Pediatrics; American Academy of Family Physicians; American College of Physicians-American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics. 2002;110(6 Pt 2):1304-1306
    • (2002) Pediatrics , vol.110 , Issue.6 PART 2 , pp. 1304-1306
  • 75
    • 44949216861 scopus 로고    scopus 로고
    • Isolation, motivation and balance: Living with type 1 or cystic fibrosis-related diabetes
    • Tierney S, Deaton C, Webb K, et al. Isolation, motivation and balance: living with type 1 or cystic fibrosis-related diabetes. J Clin Nurs. 2008;17(7B):235-243
    • (2008) J Clin Nurs , vol.17 , Issue.7 B , pp. 235-243
    • Tierney, S.1    Deaton, C.2    Webb, K.3
  • 76
    • 85039762709 scopus 로고    scopus 로고
    • Patient acceptance and satisfaction with complete segregation while hospitalized
    • Britton LJ, Gutierrez H, Hardy J. Patient acceptance and satisfaction with complete segregation while hospitalized. Pediatr Pulmonol. 2012;47(S35):403
    • (2012) Pediatr Pulmonol , vol.47 , Issue.S35 , pp. 403
    • Britton, L.J.1    Gutierrez, H.2    Hardy, J.3
  • 77
    • 1542375200 scopus 로고    scopus 로고
    • Experiences of adolescents with cystic fibrosis during their transition from paediatric to adult health care: A qualitative study of young Australian adults
    • DOI 10.1080/09638280310001644924
    • Brumfield K, Lansbury G. Experiences of adolescents with cystic fibrosis during their transition from paediatric to adult health care: a qualitative study of young Australian adults. Disabil Rehabil. 2004;26(4):223-234 (Pubitemid 38325153)
    • (2004) Disability and Rehabilitation , vol.26 , Issue.4 , pp. 223-234
    • Brumfield, K.1    Lansbury, G.2
  • 78
    • 0033988608 scopus 로고    scopus 로고
    • An Australian study of adolescents with cystic fibrosis: Perceived supportive and nonsupportive behaviors from families and friends and psychological adjustment
    • DOI 10.1016/S1054-139X(99)00026-9, PII S1054139X99000269
    • Graetz BW, Shute RH, Sawyer MG. An Australian study of adolescents with cystic fibrosis: perceived supportive and nonsupportive behaviors from families and friends and psychological adjustment. J Adolesc Health. 2000;26(1):64-69 (Pubitemid 30003979)
    • (2000) Journal of Adolescent Health , vol.26 , Issue.1 , pp. 64-69
    • Graetz, B.W.1    Shute, R.H.2    Sawyer, M.G.3
  • 79
    • 0030210239 scopus 로고    scopus 로고
    • Transferring to adult health care: Experiences of adolescents with cystic fibrosis
    • Russell MT, Reinbold J, Maltby HJ. Transferring to adult health care: experiences of adolescents with cystic fibrosis. J Pediatr Nurs. 1996;11(4):262-268
    • (1996) J Pediatr Nurs , vol.11 , Issue.4 , pp. 262-268
    • Russell, M.T.1    Reinbold, J.2    Maltby, H.J.3
  • 80
    • 33748651692 scopus 로고    scopus 로고
    • El proceso de socialización de niños y adolescentes con fibrosis quística: Apoyo para la atención de enfermería
    • Pizzignacco TMP, De Lima RAG. Socialization of children and adolescents with cystic fibrosis: Support for nursing care. Rev Lat Am Enfermagem . 2006;14(4):569-577 (Pubitemid 44387099)
    • (2006) Revista Latino-Americana de Enfermagem , vol.14 , Issue.4 , pp. 569-577
    • Pizzignacco, T.M.P.1    De Lima, R.A.G.2
  • 82
    • 0037320133 scopus 로고    scopus 로고
    • Development of the Cystic Fibrosis Questionnaire (CFQ) for assessing quality of life in pediatric and adult patients
    • DOI 10.1023/A:1022037320039
    • Henry B, Aussage P, Grosskopf C, Goehrs JM. Development of the Cystic Fibrosis Questionnaire (CFQ) for assessing quality of life in pediatric and adult patients. Qual Life Res. 2003;12(1):63-76 (Pubitemid 36223007)
    • (2003) Quality of Life Research , vol.12 , Issue.1 , pp. 63-76
    • Henry, B.1    Aussage, P.2    Grosskopf, C.3    Goehrs, J.-M.4
  • 84
    • 80054771716 scopus 로고    scopus 로고
    • Crossing the transition chasm: Experiences and recommendations for improving transitional care of young adults, parents and providers
    • van Staa AL, Jedeloo S, van Meeteren J, Latour JM. Crossing the transition chasm: experiences and recommendations for improving transitional care of young adults, parents and providers. Child Care Health Dev. 2011;37(6):821-832
    • (2011) Child Care Health Dev , vol.37 , Issue.6 , pp. 821-832
    • Van Staa, A.L.1    Jedeloo, S.2    Van Meeteren, J.3    Latour, J.M.4
  • 85
    • 0035203734 scopus 로고    scopus 로고
    • Strategies for improving transition to adult cystic fibrosis care, based on patient and parent views
    • DOI 10.1002/ppul.1154
    • Boyle MP, Farukhi Z, Nosky ML. Strategies for improving transition to adult cystic fibrosis care, based on patient and parent views. Pediatr Pulmonol. 2001;32(6):428-436 (Pubitemid 33121653)
    • (2001) Pediatric Pulmonology , vol.32 , Issue.6 , pp. 428-436
    • Boyle, M.P.1    Farukhi, Z.2    Nosky, M.L.3
  • 86
    • 84871997410 scopus 로고    scopus 로고
    • Cystic fibrosis-related diabetes in older adolescents: Parental support and self-management
    • Dashiff C, Suzuki-Crumly J, Kracke B, Britton L, Moreland E. Cystic fibrosis-related diabetes in older adolescents: parental support and self-management. J Spec Pediatr Nurs. 2013;18(1):42-53
    • (2013) J Spec Pediatr Nurs , vol.18 , Issue.1 , pp. 42-53
    • Dashiff, C.1    Suzuki-Crumly, J.2    Kracke, B.3    Britton, L.4    Moreland, E.5
  • 87
    • 17544390487 scopus 로고    scopus 로고
    • Religious/spiritual coping in childhood cystic fibrosis: A qualitative study
    • Available at
    • Pendleton SM, Cavalli KS, Pargament KI, Nasr SZ. Religious/spiritual coping in childhood cystic fibrosis: a qualitative study. Pediatrics. 2002;109(1). Available at: www.pediatrics.org/cgi/content/full/109/1/e8
    • (2002) Pediatrics , vol.109 , Issue.1
    • Pendleton, S.M.1    Cavalli, K.S.2    Pargament, K.I.3    Nasr, S.Z.4
  • 88
    • 0031901711 scopus 로고    scopus 로고
    • Reproductive health in males with cystic fibrosis: Knowledge, attitudes, and experiences of patients and parents
    • DOI 10.1002/(SICI)1099-0496(199804)25:4<226::AID-P
    • Sawyer SM, Tully MAM, Dovey ME, Colin AA. Reproductive health in males with cystic fibrosis: knowledge, attitudes, and experiences of patients and parents. Pediatr Pulmonol. 1998;25(4):226-230 (Pubitemid 28194364)
    • (1998) Pediatric Pulmonology , vol.25 , Issue.4 , pp. 226-230
    • Sawyer, S.M.1    Tully, M.-A.M.2    Dovey, M.E.3    Colin, A.A.4
  • 89
    • 78650690705 scopus 로고    scopus 로고
    • Perceptions of physical activity in a group of adolescents with cystic fibrosis
    • Swisher AK, Erickson M. Perceptions of physical activity in a group of adolescents with cystic fibrosis. Cardiopulm Phys Ther J. 2008;19(4):107-113
    • (2008) Cardiopulm Phys Ther J , vol.19 , Issue.4 , pp. 107-113
    • Swisher, A.K.1    Erickson, M.2
  • 90
    • 1642540123 scopus 로고    scopus 로고
    • Are Pediatric Practice Settings Adolescent Friendly? An Exploration of Attitudes and Preferences
    • DOI 10.1177/000992280404300107
    • Tivorsak TL, Britto MT, Klostermann BK, Nebrig DM, Slap GB. Are pediatric practice settings adolescent friendly? An exploration of attitudes and preferences. Clin Pediatr (Phila). 2004;43(1):55-61 (Pubitemid 38112266)
    • (2004) Clinical Pediatrics , vol.43 , Issue.1 , pp. 55-61
    • Tivorsak, T.L.1    Britto, M.T.2    Klostermann, B.K.3    Nebrig, D.M.4    Slap, G.B.5
  • 91
    • 69549091583 scopus 로고    scopus 로고
    • What defines a pulmonary exacerbation? The perceptions of children with cystic fibrosis
    • Abbott J, Holt A, Morton AM, et al. What defines a pulmonary exacerbation? The perceptions of children with cystic fibrosis. J Cyst Fibros. 2009;8(5):356-359
    • (2009) J Cyst Fibros , vol.8 , Issue.5 , pp. 356-359
    • Abbott, J.1    Holt, A.2    Morton, A.M.3
  • 92
    • 0043237226 scopus 로고    scopus 로고
    • Chronically ill adolescents' experiences of communicating with doctors: A qualitative study
    • DOI 10.1016/S1054-139X(03)00047-8
    • Beresford BA, Sloper P. Chronically ill adolescents' experiences of communicating with doctors: a qualitative study. J Adolesc Health. 2003;33(3):172-179 (Pubitemid 36999826)
    • (2003) Journal of Adolescent Health , vol.33 , Issue.3 , pp. 172-179
    • Beresford, B.A.1    Sloper, P.2
  • 94
    • 77955943631 scopus 로고    scopus 로고
    • "Cool friends": An evaluation of a community befriending programme for young people with cystic fibrosis
    • Macdonald K, Greggans A. "Cool friends": an evaluation of a community befriending programme for young people with cystic fibrosis. J Clin Nurs. 2010;19(17-18):2406-2414
    • (2010) J Clin Nurs , vol.19 , Issue.17-18 , pp. 2406-2414
    • Macdonald, K.1    Greggans, A.2
  • 95
    • 84876511199 scopus 로고    scopus 로고
    • Decision making about risk of infection by young adults with CF
    • (published online ahead of print January 10, 2013). doi: 10.1155/2013/658638
    • Reynolds L, Latchford G, Duff AJA, Denton M, Lee T, Peckham D. Decision making about risk of infection by young adults with CF (published online ahead of print January 10, 2013). Pulm Med. 2013: doi: 10.1155/2013/658638
    • (2013) Pulm Med
    • Reynolds, L.1    Latchford, G.2    Duff, A.J.A.3    Denton, M.4    Lee, T.5    Peckham, D.6
  • 96
    • 14844282873 scopus 로고    scopus 로고
    • Weight and energy: Parents' and children's perspectives on managing cystic ribrosis diet
    • DOI 10.1136/adc.2004.056804
    • Savage E, Callery P. Weight and energy: parents' and children's perspectives on managing cystic fibrosis diet. Arch Dis Child. 2005;90(3):249-252 (Pubitemid 40342385)
    • (2005) Archives of Disease in Childhood , vol.90 , Issue.3 , pp. 249-252
    • Savage, E.1    Callery, P.2
  • 97
    • 34447525215 scopus 로고    scopus 로고
    • Problems and solutions: Accounts by parents and children of adhering to chest physiotherapy for cystic fibrosis
    • DOI 10.1080/09638280600948060, PII 779968530
    • Williams B, Mukhopadhyay S, Dowell J, Coyle J. Problems and solutions: accounts by parents and children of adhering to chest physiotherapy for cystic fibrosis. Disabil Rehabil. 2007;29(14):1097-1105 (Pubitemid 47072974)
    • (2007) Disability and Rehabilitation , vol.29 , Issue.14 , pp. 1097-1105
    • Williams, B.1    Mukhopadhyay, S.2    Dowell, J.3    Coyle, J.4


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.