References

Bishay LC, Sawicki GS. Strategies to optimize treatment adherence in adolescent patients with cystic fibrosis. Adolesc Health Med Ther. 2016; 7:117-124 https://doi.org/10.2147/ahmt.s95637

Burden C, Ion R, Chung Y, Henry A, Downey DG, Trinder J. Current pregnancy outcomes in women with cystic fibrosis. Eur J Obstet Gynecol Reprod Biol. 2012; 164:142-145 https://doi.org/10.1016/j.ejogrb.2012.06.013

Cammidge SL, Duff AJ, Latchford GJ, Etherington C. When women with cystic fibrosis become mothers: psychosocial impact and adjustments. Pulm Med. 2016; 23:(6)154-160 https://doi.org/10.1155/2016/9458980

Ciavattini A, Ciattaglia F, Cecchi S, Gagliardini R, Tranquilli AL. Two successful pregnancies in a woman affected by cystic fibrosis: case report and review of the literature. J Matern Fetal Neonatal Med. 2012; 25:(2)113-115 https://doi.org/10.3109/14767058.2011.565839

Cronly JA, Duff AJ, Riekert KA Health-related quality of life in adolescents and adults with cystic fibrosis: physical and mental health predictors. Respir Care. 2019; 64:(4)406-414 https://doi.org/10.4187/respcare.06356

Better births: improving outcomes of maternity services in England. 2016. https://www.england.nhs.uk/wp-content/uploads/2016/02/national-maternity-review-report.pdf (accessed 8 May 2019)

Cystic Fibrosis Trust. Adult specialist cystic fibrosis centres in the United Kingdom. 2019. https://www.cysticfibrosis.org.uk/what-is-cystic-fibrosis/cystic-fibrosis-care/specialist-cystic-fibrosis-care/adult-specialist-cf-centres (accessed 15 November 2021)

Dodge JA, Lewis PA, Stanton M, Wilsher J. Cystic fibrosis mortality and survival in the UK: 1947-2003. Eur Respir J. 2007; 29:522-526 https://doi.org/10.1183/09031936.00099506

Elborn JS. Cystic fibrosis. Lancet. 2016; 388:(10059)2519-2531 https://doi.org/10.1016/s0140-6736(16)00576-6

Geake J, Tay G, Callaway L, Bell S. Pregnancy and cystic fibrosis: approach to contemporary management. Obstet Med. 2014; 7:(4)147-155 https://doi.org/10.1177/1753495x14554022

Goss CH, Rubenfield GD, Otto K, Aitken ML. The effect of pregnancy on survival in women with cystic fibrosis. Chest. 2003; 124:(4)1460-1468 https://doi.org/10.1378/chest.124.4.1460

Heimstad R, Romundstad PR, Eik-Nes SH, Salvesen KA. Outcomes of pregnancy beyond 37 weeks of gestation. Obstet Gynecol. 2006; 108:(3)500-508 https://doi.org/10.1097/01.aog.0000227783.65800.0f

Hildingsson I, Rubertsson C, Karlstrom A, Haines H. Caseload midwifery for women with fear of birth is a feasible option. Sex Reprod Healthc. 2018; 16:50-55 https://doi.org/10.1016/j.srhc.2018.02.006

Hoo ZH, Curley R, Campbell MJ, Walters SJ, Hind D, Wildman MJ. Accurate reporting of adherence to inhaled therapies in adults with cystic fibrosis: methods to calculate “normative adherence”. Patient Prefer Adherence. 2016; 10:887-900 https://doi.org/10.2147/ppa.s105530

International Confederation of Midwives. Definition of midwifery. 2017. https://www.internationalmidwives.org/assets/files/definitions-files/2018/06/eng-definition_midwifery.pdf (accessed 2 May 2019)

Jessup M, Li A, Fulbrook P, Bell SC. The experience of men and women with cystic fibrosis who have become a parent: a qualitative study. J Clin Nurs. 2018; 27:1702-1712 https://doi.org/10.1111/jocn.14229

Jomeen J. Psychological context of childbirth. In: Macdonald S, Johnson G (eds). Edinburgh: Elsevier; 2017

Kazmerski TM, Borrero S, Tuchman LK, Pilewski JM, Orenstein DM, Miller E. Provider and patient attitudes regarding sexual health in young women with cystic fibrosis. Pediatrics. 2016; 137:(6)201-209 https://doi.org/10.1542/peds.2015-4452

Lau EMT, Barnes DJ, Moriarty C Pregnancy outcomes in the current era of cystic fibrosis care: a 15-year experience. Aust N Z J Obstet Gynaecol. 2011; 51:220-224 https://doi.org/10.1111/j.1479-828x.2010.01287.x

Llorente RPA, Garcia CB, Martin JJD. Treatment compliance in children and adults with cystic fibrosis. J Cyst Fibros. 2008; 7:(5)359-367 https://doi.org/10.1016/j.jcf.2008.01.003

Madden D, Sliney A, O'Friel A Using action research to develop midwives' skills to support women with perinatal mental health needs. Journal of Clinical Nursing. 2018; 27:(3–4) https://doi.org/10.1111/jocn.13908

Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries across the UK. Saving lives, improving mothers' care. 2018. https://www.npeu.ox.ac.uk/downloads/files/mbrrace-uk/reports/MBRRACE-UK%20Maternal%20Report%202017%20-%20Web.pdf (accessed 2 May 2019)

Nagle U, Farrelly M. Women's views and experiences of having their mental health needs considered in the perinatal period. Midwifery. 2018; 66:79-87 https://doi.org/10.1016/j.midw.2018.07.015

National Institute for Health and Care Excellence. Antenatal care for uncomplicated pregnancies. 2008a. https://www.nice.org.uk/guidance/cg62/chapter/1-Guidance (accessed 9 May 2019)

National Institute for Health and Care Excellence. Induction of labour. 2008b. https://www.nhs.uk/Planners/pregnancycareplanner/Documents/NICE_induction_of_labour.pdf (accessed 8 May 2019)

Noonan M, Doody O, O'Regan A, Jomeen J, Galvin R. Irish general practitioners' view of perinatal mental health in general practice: a qualitative study. BMC Fam Pract. 2018; 19:(1)196-200 https://doi.org/10.1186/s12875-018-0884-5

Oates GR, Stepanikova I, Rowe SM, Gamble S, Gutierrez HH, Harris WT. Objective versus self-reported adherence to airway clearance therapy in cystic fibrosis. Respir Care. 2019; 64:(2)176-181 https://doi.org/10.4187/respcare.06436

O'Connell MA, Leahy-Warren P, Kenny LC, Khashan AS. Pregnancy outcomes in women with severe fear of childbirth. J Psychosom Res. 2019; 120:105-109 https://doi.org/10.1016/j.jpsychores.2019.03.013

Paramothayan S. Essential respiratory medicine.Singapore: Wiley Blackwell; 2019

Quittner AL, Goldbeck L, Abbott J Prevalence of depression and anxiety in patients with cystic fibrosis and parent caregivers: results of the international depression epidemiological study across nine countries. Thorax. 2014; 69:(12)1090-1097 https://doi.org/10.1136/thoraxjnl-2014-205983

Renton M, Priestly L, Bennet L, Mackillop L, Chapman SJ. Pregnancy outcomes in cystic fibrosis: a 10-year experience from a UK centre. Obstet Med. 2015; 8:(2)99-101 https://doi.org/10.1177/1753495x15575628

Campaign for normal birth.London: Royal College of Midwives; 2005

Sandall J, Soltani H, Gates S, Shennan A, Devane D. Midwife-led continuity models versus other models of care for childbearing women. Cochrane Database Syst Rev. 2016; https://doi.org/10.1002/14651858.cd004667.pub5

Siracusa CM, Weiland JL, Acton JD The impact of transforming healthcare delivery on cystic fibrosis outcomes: a decade of quality improvement at Cincinnati Children's Hospital. BMJ: Qual Saf. 2014; 23:56-63 https://doi.org/10.1136/bmjqs-2013-002361

Healthcare professionals' views about safety in maternity services. 2008. https://bit.ly/3DKUPeU (accessed 2 May 2019)

Smith BA, Wood BL. Psychological factors affecting disease activity in children and adolescents with cystic fibrosis: medical adherence as a mediator. Curr Opin Pediatr. 2007; 19:553-558 https://doi.org/10.1097/mop.0b013e3282ef480a

Thorpe-Beeston JG, Madge S, Gyi K, Hodson M, Bilton D. The outcome of pregnancies in women with cystic fibrosis – single centre experience 1998-2011. BJOG. 2013; 120:(3)354-361 https://doi.org/10.1111/1471-0528.12040

Viveiros CJ, Darling EK. Perceptions of barriers to accessing perinatal mental health care in midwifery: a scoping review. Midwifery. 2019; 70:106-118 https://doi.org/10.1016/j.midw.2018.11.011

Whitty JE. Cystic fibrosis in pregnancy. Clin Obstet Gynecol. 2010; 53:369-376 https://doi.org/10.1097/grf.0b013e3181deb448

World Health Organization. Midwives are essential to the provision of quality care, in all settings, globally. 2019. https://www.who.int/news-room/commentaries/detail/midwives-are-essential-to-the-provision-of-quality-of-care-in-all-settings-globally (accessed 9 May 2019)

Yohannes AM, Willgoss TG, Fatoye FA, Dip DM, Webb K. Relationship between anxiety, depression and quality of life in adult patients with cystic fibrosis. Respiratory Care. 2012; 57:(4)550-556

Cystic fibrosis and caseload midwifery

02 December 2021
12 min read
Volume 29 · Issue 12

Abstract

Midwives must provide woman-centred, holistic care for the diverse UK childbearing population. As the NHS moves to adopt the recommendations made in the ‘Better Births’ report, is there an argument to invest in protected caseload midwifery contacts for women with cystic fibrosis? Caseload midwifery refers to a continuity model where a small team of midwives provide care throughout the antenatal, intrapartum and postnatal continuum. Cystic fibrosis affects multiple organ systems and requires specialist medical management during pregnancy. Living with cystic fibrosis has many psychosocial implications and pregnancy presents additional challenges. Health and wellbeing outcomes are improved when individuals are treated holistically in the non-pregnant population; therefore, during pregnancy, birth and postnatally, caseload midwifery may provide a legitimate intervention to improve health outcomes in pregnant women with cystic fibrosis.

Historically, midwives have been considered experts in normality, acting as the primary carers for clients experiencing uncomplicated pregnancy and birth (Royal College of Midwives, 2005). As a result of changes in public health, advancements in modern medicine, increased recognition of risk factors and the growing medicalisation of birth, the UK childbearing population are presenting to maternity services with a rising incidence of medical and social complexities (Smith and Dixon, 2008). Accordingly, the knowledge base and skills required for health professionals to provide safe, holistic midwifery care to the diverse UK childbearing population is growing (Smith and Dixon, 2008).

The traditional definition of midwives as experts in normality could now be considered too narrow, and modern midwifery can be defined as working in partnership with women to optimise physiological mechanisms of childbirth, while prioritising safe and holistic care and promoting cultural experiences of childbearing (International Confederation of Midwives, 2017). Seemingly, modern midwives must exist in both the medical and social models of care, but stay true to the woman-centred principles of midwifery. Caseload midwifery refers to a small team continuity model where 4–6 midwives, known to the woman and family, provide care throughout the antenatal, intrapartum and postnatal continuum (Cumberlege, 2016). With NHS care moving towards small team, caseload midwifery, what will the growing population of women with very complex pregnancies experience? Arguably, all women benefit from midwifery care, regardless of risk status (World Health Organization, 2019).

Register now to continue reading

Thank you for visiting British Journal of Midwifery and reading some of our peer-reviewed resources for midwives. To read more, please register today. You’ll enjoy the following great benefits:

What's included

  • Limited access to our clinical or professional articles

  • New content and clinical newsletter updates each month