The experience of men and women with cystic fibrosis who have become a parent: A qualitative study

被引:8
|
作者
Jessup, Melanie [1 ,2 ]
Li, Anne [3 ]
Fulbrook, Paul [1 ,2 ]
Bell, Scott C. [4 ,5 ,6 ]
机构
[1] Australian Catholic Univ, Sch Nursing Midwifery & Paramed, Brisbane, Qld, Australia
[2] Prince Charles Hosp, Nursing Res & Practice Dev Ctr, Brisbane, Qld, Australia
[3] Prince Charles Hosp, Dept Social Work, Brisbane, Qld, Australia
[4] QIMR Berghofer Med Res Inst, Brisbane, Qld, Australia
[5] Univ Queensland, Sch Med, Brisbane, Qld, Australia
[6] Prince Charles Hosp, Dept Thorac Med, Brisbane, Qld, Australia
关键词
chronic illness; cystic fibrosis; family caregivers; fathers; healthcare professionals; life-shortening illness; mothers; parenting; pregnancy; qualitative research; CONGENITAL HEART-DISEASE; HEALTH-CARE; REPRODUCTIVE HEALTH; PREGNANCY OUTCOMES; DECISION-MAKING; YOUNG-ADULTS; CF PREGNANCY; GROWING-UP; ADOLESCENTS; TRANSITION;
D O I
10.1111/jocn.14229
中图分类号
R47 [护理学];
学科分类号
1011 ;
摘要
Aims and objectives: To explore the experiences of men and women with cystic fibrosis in becoming parents. Background: As lifespan for people with cystic fibrosis increases, and reproductive technology advances, having a child of their own becomes a possibility. Design: This study used a phenomenological framework. Methods: Seven Australian adults with cystic fibrosis were invited to describe their experiences of becoming parents in the context of a semi-structured interview. Analysis of the data involved highlighting recurrent phrases and isolating emergent themes. Results: Two overarching themes characterised the participants' experience: Counting the cost, as they recalled Concentric communication and Pathways to pregnancy; and Living the dream, as they cast a retrospective view over this, their major achievement, in the light of their Reaction: a dream comes true, Coping: a question of balance, Conjecture: the future redefined and Confidence: recalibrating. Conclusions: While advances in cystic fibrosis care and reproductive technology have increased the possibility of individuals with cystic fibrosis becoming parents, the passage to becoming a parent is a complex process.
引用
收藏
页码:1702 / 1712
页数:11
相关论文
共 50 条
  • [21] How women who have experienced one or more miscarriages manage their feelings and emotions when they become pregnant again - a qualitative interview study
    Andersson, Ida-Maria
    Nilsson, Sandra
    Adolfsson, Annsofie
    SCANDINAVIAN JOURNAL OF CARING SCIENCES, 2012, 26 (02) : 262 - 270
  • [22] Piquing their "Pinterest": A qualitative study to format and deliver complex fish consumption guidelines to women who are or could become pregnant
    Renner, Jennifer
    LaFrance, Amy B.
    Taswell, Ruth
    Mettner, Jeanne
    Katz, Abigail S.
    McCann, Patricia
    Kottke, Thomas E.
    Harvey, Lisa
    Ziegenfuss, Jeanette Y.
    COGENT SOCIAL SCIENCES, 2018, 4 (01): : 1 - 13
  • [23] Sexual and Reproductive Health of Young Women With Cystic Fibrosis: A Concept Mapping Study
    Kazmerski, Traci M.
    Prushinskaya, Olga, V
    Hill, Kelsey
    Nelson, Eliza
    Leonard, Jessica
    Mogren, Kelly
    Pitts, Sarah A. B.
    Roboff, Julia
    Uluer, Ahmet
    Emans, S. Jean
    Miller, Elizabeth
    Sawicki, Gregory S.
    ACADEMIC PEDIATRICS, 2019, 19 (03) : 307 - 314
  • [24] Impact of illness on mothers of children with cystic fibrosis in Tunisia: A qualitative interview study Impact of cystic fibrosis on Tunisian mothers
    Hamouda, S.
    Hadj, I. Bel
    Sayari, T.
    Louati, A.
    Messaoud, T.
    Khalsi, F.
    Boussetta, K.
    ARCHIVES DE PEDIATRIE, 2022, 29 (06): : 429 - 433
  • [25] Exploring the need for Transition Readiness Scales within cystic fibrosis services: A qualitative descriptive study
    Bourke, Mary
    Houghton, Catherine
    JOURNAL OF CLINICAL NURSING, 2018, 27 (13-14) : 2814 - 2824
  • [26] Early disease surveillance in young children with cystic fibrosis: A qualitative analysis of parent experiences
    Douglas, Tonia A.
    Pooley, Julie Ann
    Shields, Linda
    Stick, Stephen M.
    Branch-Smith, Cindy
    JOURNAL OF CYSTIC FIBROSIS, 2021, 20 (03) : 511 - 515
  • [27] Men who have sex with men experience low anxiety and few barriers to performing anal self or companion examinations: a qualitative study of the Prevent Anal Cancer Palpation Study
    Flores, Rey A.
    Wilkerson, J. Michael
    Travis, Andrew
    Almirol, Ellen
    Washington, Dejuan
    Weaver, Lou
    Liebert, Cameron
    Chiao, Elizabeth
    Hazra, Aniruddha
    Nyitray, Alan G.
    CULTURE HEALTH & SEXUALITY, 2024, 26 (07) : 920 - 935
  • [28] Identifying social and economic barriers to regular care and treatment for Black men who have sex with men and women (BMSMW) and who are living with HIV: a qualitative study from the Bruthas cohort
    Arnold, Emily A.
    Weeks, John
    Benjamin, Michael
    Stewart, William R.
    Pollack, Lance M.
    Kegeles, Susan M.
    Operario, Don
    BMC HEALTH SERVICES RESEARCH, 2017, 17 : 1 - 11
  • [29] The experience of living with and managing cystic fibrosis related diabetes: a qualitative review
    Collins, Sarah
    Jones, Andrew
    Woodward, Sue
    Sturt, Jackie
    JOURNAL OF RESEARCH IN NURSING, 2022, 27 (08) : 735 - 753
  • [30] What influences contraceptive behaviour in women who experience unintended pregnancy? A systematic review of qualitative research
    Pratt, R.
    Stephenson, J.
    Mann, S.
    JOURNAL OF OBSTETRICS AND GYNAECOLOGY, 2014, 34 (08) : 693 - 699