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

Journal article


Jessup, Melanie, Li, Anne, Fulbrook, Paul and Bell, Scott C.. (2018). The experience of men and women with cystic fibrosis who have become a parent: A qualitative study. Journal of Clinical Nursing. 27(44050), pp. 1702 - 1712. https://doi.org/10.1111/jocn.14229
AuthorsJessup, Melanie, Li, Anne, Fulbrook, Paul and Bell, Scott C.
Abstract

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. Relevance to clinical practice: These findings can inform health professionals to support the adaptive work necessary for families that include members with cystic fibrosis. A contemporary understanding of this phenomenon is necessary for facilitating clinically relevant communication.

Keywordschronic illness; cystic fibrosis; family caregivers; fathers; healthcare professionals; lifeshortening illness; mothers; parenting; pregnancy; qualitative research
Year2018
JournalJournal of Clinical Nursing
Journal citation27 (44050), pp. 1702 - 1712
PublisherWiley-Blackwell
ISSN0962-1067
Digital Object Identifier (DOI)https://doi.org/10.1111/jocn.14229
Scopus EID2-s2.0-85045922339
Page range1702 - 1712
Research GroupSchool of Nursing, Midwifery and Paramedicine
Publisher's version
File Access Level
Controlled
Place of publicationUnited Kingdom
EditorsD. Jackson
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Fulbrook, Paul, Langley, Gayle, Schmollgruber, Shelley, Albarran, John and Latour, Jos. (2014). South African critical care nurses' views on end-of-life decision-making and practices. Nursing in Critical Care. 19(1), pp. 9 - 17. https://doi.org/10.1111/nicc.12026
Sleep assessment of hospitalised patients : A literature review
Fulbrook, Paul, Hoey, Lynn and Douglas, James. (2014). Sleep assessment of hospitalised patients : A literature review. International Journal of Nursing Studies. 51(9), pp. 1281 - 1288. https://doi.org/10.1016/j.ijnurstu.2014.02.001
Perceived barriers to healthy lifestyle activities in midlife and older Australian women with type 2 diabetes
McGuire, Amanda, Anderson, Debra and Fulbrook, Paul. (2014). Perceived barriers to healthy lifestyle activities in midlife and older Australian women with type 2 diabetes. Collegian. 21(4), pp. 301 - 310. https://doi.org/10.1016/j.colegn.2013.07.001
Clinical practice guidelines for nurse-administered procedural sedation and analgesia in the cardiac catheterization laboratory : A modified Delphi study
Fulbrook, Paul, Conway, Aaron, Rolley, John and Page, Karen. (2014). Clinical practice guidelines for nurse-administered procedural sedation and analgesia in the cardiac catheterization laboratory : A modified Delphi study. Journal of Advanced Nursing. 70(5), pp. 1040 - 1053. https://doi.org/10.1111/jan.12337
The first 18 months: Parental choices regarding their infant's health care needs
Kearney, Lauren and Fulbrook, Paul. (2014). The first 18 months: Parental choices regarding their infant's health care needs. Neonatal, Paediatric and Child Health Nursing. 17(3), pp. 17 - 22.
Risk factors for impaired respiratory function during nurse-administered procedural sedation and analgesia in the cardiac catheterisation laboratory : a matched case-control study
Conway, Aaron, Page, Karen, Rolley, John and Fulbrook, Paul. (2013). Risk factors for impaired respiratory function during nurse-administered procedural sedation and analgesia in the cardiac catheterisation laboratory : a matched case-control study. European Journal of Cardiovascular Nursing. https://doi.org/10.1177/1474515112470351
Decreasing pressure injury prevalence in an Australian general hospital : a ten-year review
Miles, Sandra, Fulbrook, Paul, Nowicki, Tracy and Franks, Cherie. (2013). Decreasing pressure injury prevalence in an Australian general hospital : a ten-year review. Wound Practice & Research.
Improving statistical analysis of matched case-control studies in nursing literature
Conway, Aaron, Rolley, John, Fulbrook, Paul, Page, Karen and Thompson, David. (2013). Improving statistical analysis of matched case-control studies in nursing literature. Research in Nursing and Health. https://doi.org/10.1002/nur.21536
Understanding the experiences of mothers who are breastfeeding an infant with tongue-tie : a phenomenological study
Edmunds, Janet, Fulbrook, Paul and Miles, Sandra. (2013). Understanding the experiences of mothers who are breastfeeding an infant with tongue-tie : a phenomenological study. Journal of Human Lactation. https://doi.org/10.1177/0890334413479174
Children's conceptions of their parent's lung transplant
Fulbrook, Paul, Leisfield, T and Wiggins, K. (2013). Children's conceptions of their parent's lung transplant. Journal of Child Health Care. https://doi.org/10.1177/1367493512450625
A survey of Italian intensive care nurses' knowledge levels
Fulbrook, Paul. (2012). A survey of Italian intensive care nurses' knowledge levels. Not Listed - Awaiting Journal Creation.
Open Access community child health clinics : the everyday experience of parents and child health nurses
Kearney, Lauren and Fulbrook, Paul. (2012). Open Access community child health clinics : the everyday experience of parents and child health nurses. Journal of Child Health Care. 16(1), pp. 5 - 14. https://doi.org/10.1177/1367493511419874
Effect of feedback on ventilator care bundle compliance : before and after study
Lawrence, Petra and Fulbrook, Paul. (2012). Effect of feedback on ventilator care bundle compliance : before and after study. Nursing in Critical Care. 17(6), pp. 293 - 301. https://doi.org/10.1111/j.1478-5153.2012.00519.x
A survey of European intensive care nurses' knowledge levels
Fulbrook, Paul, Albarran, John W., Baktoft, Birte and Sidebottom, Ben. (2012). A survey of European intensive care nurses' knowledge levels. International Journal of Nursing Studies. 49(2), pp. 191 - 200. https://doi.org/10.1016/j.ijnurstu.2011.06.001
Critical care nursing organizations and activities: A third worldwide review
Williams, Ged, Bost, Nerolie, Chaboyer, Wendy, Fulbrook, Paul, Alberto, Laura, Thorsteinsdóttir, Rósa, Schmollgruber, Shelley and Chan, David. (2012). Critical care nursing organizations and activities: A third worldwide review. International Nursing Review. 59(1), pp. 73 - 80. https://doi.org/10.1111/j.1466-7657.2011.00926.x
Person-centered medicine and chronic disease :the role of interdisciplinary education and treatment adherence
Boyle, Cathy, Post, Gerardus, Masel, Philip, Fulbrook, Paul and Clark, Kevin. (2011). Person-centered medicine and chronic disease :the role of interdisciplinary education and treatment adherence. International Journal of Person Centered Medicine. 1(3), pp. 606 - 611.
Tongue-tie and breastfeeding: A review of the literature
Edmunds, Janet, Miles, Sandra J. and Fulbrook, Paul. (2011). Tongue-tie and breastfeeding: A review of the literature. Breastfeeding Review (print version). 19(1), pp. 19 - 26.
The ventilator care bundle and its impact on ventilator-associated pneumonia: A review of the evidence
Lawrence, Petra and Fulbrook, Paul. (2011). The ventilator care bundle and its impact on ventilator-associated pneumonia: A review of the evidence. Nursing in Critical Care (print version). 16(5), pp. 222 - 234. https://doi.org/10.1111/j.1478-5153.2010.00430.x
Die anwesenheit von angehörigen während der kardiopulmonalen reanimation / the presence of family members during cardiopulmonary resuscitation
Fulbrook, Paul. (2010). Die anwesenheit von angehörigen während der kardiopulmonalen reanimation / the presence of family members during cardiopulmonary resuscitation. Intensiv: Fachzeitschrift fuer Intensivpflege und Anaesthesie. 18(1), pp. 38 - 40.
Preparation of nurses for novice entry to perioperative practice: Evaluation of a short education program
Allanson, Anne Maree and Fulbrook, Paul. (2010). Preparation of nurses for novice entry to perioperative practice: Evaluation of a short education program. ACORN : The Journal of Perioperative Nursing in Australia. 23(2), pp. 14 - 27.
Bed safety off the rails
Nowicki, Tracy, Fulbrook, Paul and Burns, Cheryl. (2010). Bed safety off the rails. Australian Nursing and Midwifery Journal. 18(1), pp. 31 - 34.
Pressure injury prevention : continence, skin hygiene and nutrition management
Roosen, Kerri, Fulbrook, Paul and Nowicki, Tracy. (2010). Pressure injury prevention : continence, skin hygiene and nutrition management. Australian Nursing Journal. 18(2), pp. 31 - 34.
EfCCNa survey: European intensive care nurses' attitudes and beliefs towards end-of-life care
Latour, Jos M., Fulbrook, Paul Richard and Albarran, John W.. (2009). EfCCNa survey: European intensive care nurses' attitudes and beliefs towards end-of-life care. Nursing in Critical Care. 14(3), pp. 110 - 121. https://doi.org/10.1111/j.1478-5153.2008.00328.x
Provision of child health services 2005-2009: Evaluation of an open access clinic
Kearney, Lauren, Fulbrook, Paul Richard and Howlett, Lorrie. (2009). Provision of child health services 2005-2009: Evaluation of an open access clinic Queensland Health.
Changing the mindset: An inter-disciplinary approach to management of bariatric patient
Nowicki, Tracy, Burns, Cheryl, Fulbrook, Paul Richard and Jones, Jacqueline. (2009). Changing the mindset: An inter-disciplinary approach to management of bariatric patient. Collegian. 16(4), pp. 171 - 175. https://doi.org/10.1016/j.colegn.2009.03.002
Intensive and critical care nursing perspectives
Williams, G. F., Fulbrook, Paul Richard, Alexandrov, A. W., Montanez, W. Canon, Salisu-Kabara, H. M. and Chan, D. W.K.. (2009). Intensive and critical care nursing perspectives. In In A. Gullo, J. Besso and P.D.Lumb & G.F.Williams (Ed.). Intensive and critical care medicine pp. 119 - 132 Springer-Verlag.
A clinical improvement project to develop and implement a decision-making framework for the use of seclusion
Hyde, Sandra, Fulbrook, Paul Richard, Fenton, Keryn and Kilshaw, Michael. (2009). A clinical improvement project to develop and implement a decision-making framework for the use of seclusion. International Journal of Mental Health Nursing. 18, pp. 398 - 408. https://doi.org/10.1111/j.1447-0349.2009.00631.x
The effectiveness of a caring protocol: An evaluation study
Fulbrook, Paul. (2009). The effectiveness of a caring protocol: An evaluation study. Journal of Research in Nursing. 14(4), pp. 317 - 318. https://doi.org/10.1177/1744987108093360
The presence of family members during cardiopulmonary resuscitation: Position statement
Lynch, Fiona, Fulbrook, Paul, Latour, Jos, Albarran, John, de Graaf, Wouter, Devictor, Denis and Norekval, Tone. (2008). The presence of family members during cardiopulmonary resuscitation: Position statement. Infant: for neonatal and paediatric healthcare professionals (print version). 4(2), pp. 44 - 45.
Enteral feeding practices in European ICUs: A survey from the European federation of critical care nursing associations (EFCCNA)
Roynette, C., Numico, Anke Bongers, Fulbrook, Paul, Albarran, John and Hofman, Z.. (2008). Enteral feeding practices in European ICUs: A survey from the European federation of critical care nursing associations (EFCCNA). e-SPEN Journal: the European e-journal of clinical nutrition and metabolism. 2(2), pp. 33 - 39. https://doi.org/10.1016/j.eclnm.2007.10.004
Paediatric critical care nurses' attitudes and experiences of parental presence during cardiopulmonary resuscitation: A European survey
Fulbrook, Paul, Latour, Jos and Albarran, John. (2007). Paediatric critical care nurses' attitudes and experiences of parental presence during cardiopulmonary resuscitation: A European survey. International Journal of Nursing Studies. 44(7), pp. 1238 - 1249. https://doi.org/10.1016/j.ijnurstu.2006.05.006
Critical care nursing organizations and activities - a second worldwide review: Original article
Willia, Ged, Chaboyer, Wendy, Alberto, Laura, Thorsteinsdottir, Rosa, Schmollgruber, Shelley, Fulbrook, Paul, Chan, Dominic and Bost, Nerolie. (2007). Critical care nursing organizations and activities - a second worldwide review: Original article. International Nursing Review. 54(2), pp. 151 - 159. https://doi.org/10.1111/j.1466-7657.2007.00543.x
A European survey of enteral nutrition practices and procedures in adult intensive care units
Fulbrook, Paul, Bongers, Anke and Albarran, John. (2007). A European survey of enteral nutrition practices and procedures in adult intensive care units. Journal of Clinical Nursing. 16(11), pp. 2132 - 2141. https://doi.org/10.1111/j.1365-2702.2006.01841.x
The presence of family members during cardiopulmonary resuscitation: European federation of critical care nursing associations, European society of paediatric and neonatal intensive care and European society of cardiology council on cardiovascular
Fulbrook, Paul, Latour, Jos, Albarran, John, de Graaf, Wouter, Lynch, Fiona, Devictor, Denis and Norekval, Tone. (2007). The presence of family members during cardiopulmonary resuscitation: European federation of critical care nursing associations, European society of paediatric and neonatal intensive care and European society of cardiology council on cardiovascular. European Journal of Cardiovascular Nursing. 6(4), pp. 255 - 258. https://doi.org/10.1016/j.ejcnurse.2007.07.003
Understanding the experiences of mothers who are breast feeding an infant with tongue-tie: a hermeneutic phenomenology study.
Miles, Sandra and Fulbrook, Paul. (2007). Understanding the experiences of mothers who are breast feeding an infant with tongue-tie: a hermeneutic phenomenology study [Dataset]. Australian Catholic University. https://doi.org/10.26199/acu.85095
Portable oxygen: Longer for less with oxymizer pendant
Fulbrook, Paul and Serginson, John. (2006). Portable oxygen: Longer for less with oxymizer pendant. Airways Journal (print version). 4(2), pp. 105 - 108.
Education for outreach: Development of an inter-professional MSC in critical care
Fulbrook, Paul and Cockerell, Janet. (2005). Education for outreach: Development of an inter-professional MSC in critical care. Nursing in Critical Care. 10(5), pp. 255 - 262. https://doi.org/10.1111/j.1362-1017.2005.00123.x
Advancing the clinical perspective: A practice development project to develop the nurse practitioner role in an acute hospital trust
Walsgrove, Hilary and Fulbrook, Paul. (2005). Advancing the clinical perspective: A practice development project to develop the nurse practitioner role in an acute hospital trust. Journal of Clinical Nursing. 14(4), pp. 444 - 455. https://doi.org/10.1111/j.1365-2702.2004.01089.x
Realizing advanced nursing practice through reflection
Fulbrook, Paul. (2004). Realizing advanced nursing practice through reflection. Nursing in Critical Care. 9(6), pp. 255 - 256. https://doi.org/10.1111/j.1362-1017.2004.00089.x
Developing a network protocol: Nurse-led weaning from ventilation
Fulbrook, Paul, Delaney, N., Rigby, J., Sowden, A., Trevett, M., Turner, L. and Whittam, A.. (2004). Developing a network protocol: Nurse-led weaning from ventilation. Connect: The World of Critical Care Nursing. 3(2), pp. 28 - 37.
Why do student nurses leave? Suggestions from a Delphi study
Fulbrook, Paul. (2003). Why do student nurses leave? Suggestions from a Delphi study. Nurse Education Today. 23(6), pp. 449 - 458. https://doi.org/10.1016/S0260-6917(03)00063-7
Developing best practice in critical care nursing: Knowledge, evidence and practice
Fulbrook, Paul. (2003). Developing best practice in critical care nursing: Knowledge, evidence and practice. Nursing in Critical Care. 8(3), pp. 96 - 102. https://doi.org/10.1046/j.1478-5153.2003.00010.x
Care bundles in critical care: A practical approach to evidence-based practice
Fulbrook, Paul and Mooney, Sharon. (2003). Care bundles in critical care: A practical approach to evidence-based practice. Nursing in Critical Care. 8(6), pp. 249 - 255. https://doi.org/10.1111/j.1362-1017.2003.00039.x