Study of the Support avaliable for women with myasthenia in pregnancy
The myasthenia nurse specialist can play a vital role in supporting patients with myasthenia who wish to conceive, who are pregnant and who have had babies. Within the specialist role supporting patients and their families is already a high priority, be this supporting patient choices, information giving, psychological support and facilitating patient pathways.
The clinical nurse specialist role encompasses transforming practice to support and improve patient care and nursing practice, through education, research, audit, clinical leadership and using evidence–based care (Mayo et al, 2010 and Muller et al, 2010). The clinical nurse specialist may be the link/key point of access for patients within a service, co-ordinating care and management of patients through complex pathways and providing information and support to ensure informed decision making.
The level or type of support may change when the patient with myasthenia decides to have a baby. This support may involve helping make the right choices regarding timing the pregnancy, medications and expectations during and after pregnancy. Most of the support given will be information and practical advice and during pregnancy the specialist nurse can liaise with the obstetric team to provide them with any information they may require.
The specialist nurse can also act as the link between the maternity and neurological services to provide a safety net for patients who are experiencing problems with their myasthenia. Several reports into pregnancy in patients with myasthenia suggest that there is an increased chance of relapse of symptoms in the first trimester and in the month after delivery, (Briemberg, 2007, Ciafoloni & Massey 2004, Batocchi et al 1999). The recommendations from the above authors are that patients with myasthenia have a collaborative approach to their obstetric care. The myasthenia nurse is in a good position to ensure that appointments can be made if medication adjustments or assessment of the myasthenia is needed as the pregnancy progresses.
The specialist nurses can provide Pre-conception support. Myasthenia gravis affects women mainly during the childbearing years therefore it is important to discuss family planning early; especially when starting on immunosuppression/disease modifying treatments, (Ciafaloni & Massey 2004 and Williams Sax & Rosenbaum 2006). Women may express concerns about the impact that these medications may have on the development of their baby. Williams Sax & Rosenbaum (2006) go on to suggest that patients should be advised not to plan pregnancy within a year or two of diagnosis as the risks of relapse increase if the disease is not stable. This view is also supported by Ciafaloni & Massey (2004) who suggest that maximising stability should be the main goal before planning pregnancy.
The role that the specialist nurse has is vital therefore in monitoring the symptoms and overall stability of the myasthenia through regular contacts and when the patient is planning pregnancy discussions can be centred around the implications of treatment on the pregnancy. Women and their partners often ask about the impact that pregnancy may have on the myasthenia, especially if there was a problem during/following a previous pregnancy. There is evidence to suggest that subsequent pregnancies may have differing patterns of relapse, where one may be rocky another may be uneventful, (Briemberg, 2007, Batocchi et al 1999), this then emphasises the need for close, collaboration between the neurology and obstetric teams. Barber (2008) supports the above view as close monitoring during pregnancy may prevent complications and may identify and manage problems early, while Thierry (2006) emphasises the importance of preconception advice to determine what support systems need to be considered for post delivery and supports the view that a collaborative approach to pregnancy management can support better patient outcomes.
Once a patient is pregnant, the nurse can help co-ordinate care by linking the neurology and obstetric teams, providing information about MG and medications. The nurse can provide support to manage the symptoms of fatigue (pregnancy related); and any problems that may arise during the later months. This may involve bringing the patient to clinic to monitor medications, as doses may need to be altered due to the pregnancy related renal clearance, expanded plasma volume and the changes in medication absorption; this is supported by Stafford & Dildy, (2005) who suggest that monitoring should also include signs of increasing weakness or the potential for a myasthenic crisis.
The specialist nurse can link with the midwife and get the health visitor involved early, as this may be beneficial as there is potential for relapse in the first few weeks/month post partum, at a time when sleep deprivation and hormonal fluctuations may make the myasthenia worse. Regular follow up – either telephonically or in the nurse led clinic may help to detect the potential for relapse post partum. The nurse is also able to consider referral to the obstetric physiotherapist for the assessment and support for changing mobility needs as the pregnancy progresses. The myasthenia nurse may be able to provide advice on practical things that may help with their baby; such as baby slings for women who have upper limb weakness.
The challenges faced by new parents such as sleep deprivation, hormonal changes and dealing with a small infant can be magnified in patients with myasthenia. If a new mother and her partner are not given sufficient support there is a 10-15 % risk of post natal depression in patients without a chronic condition (Horowitz & Goodman, 2005 and Lumley, 2005) and this has a huge impact on the family unit. Therefore it is well recognised that early support for the couple through ante natal classes and access to health visitors who have been trained in mental health issues, decreases the chances of post natal depression developing or may promote early recognition of symptoms (Brugha et al, 2000, Misri et al, 2000).
The Royal College of Nursing produced some guidelines on Pregnancy and Disability (RCN, 2007) for midwives and nurses, which encourage care providers to be aware of the potential for post natal depression in patients with disabilities. These guidelines provide useful information for nurses and midwives who are caring for long term conditions.
Post natal support:
The myasthenia nurse may help by being available at short notice for advice if in the immediate post partum period, the patient develops worsening of her myasthenia. This may involve liaising with the neurologist if the patient runs into trouble; bringing them to clinic early and facilitating appropriate admissions. Another aspect of support would be liaising with the health visitors with regards to issues around fatigue, breastfeeding (medication), monitoring for signs of post natal depression. It is important to ensure support for mums who are not able to breast feed due to weakness in their arms, making sure they are not stigmatised for not breast feeding.
If a woman’s initial presentation of myasthenia occurs after delivery the support needed increases, as not only does the woman have to deal with the myasthenia weakness, but also a small baby and an anxious partner. The information needs at this time need to be balanced with the need to ensure that the patient is able to bond with her baby and not get over exhausted. Over time the support will be tailored according to the needs of the woman and her partner. This may involve follow up in nurse led clinics, out reach and telephone support.
It is important to acknowledge the physical and emotional impact that being diagnosed with a long term condition has on a new mum and that all partners in the provision of care need to be balanced to ensure maximum support when needed.
Myasthenia nurse specialist network:
Provision of telephone support to a specified region and then support for patients within their designated NHS Trusts
Southampton: South West England
Liverpool: North England and North Wales and Northern Ireland
London: South East England
Resources available for women and their partners:
Most patients with myasthenia will be aware of the support available through the website, the MGA Branch network and the Regional Organisers.
Information and support network for antenatal patients, post natal with classes and courses.
www.thebabycafe.org: breast feeding support
www.netmums.com: support for mums – play groups to healthy eating
www.askbaby.com: advice and support for pregnancy and post natal period
www.breastfeedingnetwork.org.uk: information about breastfeeding, medications in breastfeeding and support
www.busylittleones.co.uk: for baby and toddler activities and resources for parents/grandparents
www.mumsmeetup.com: networking and support for new mums both on and off line
www.goreal.org.uk: information about use of real nappies and service provision across the UK.
www.childcarelink.gov.uk: directs to local child information service for childcare provisions in local area
www.ncma.org.uk: national childminding association helps find registered, Ofsted inspected childminders
www.oneparentfamilies.org.uk: national council for one parent families
www.pat.org.uk: professional association of nursery nurses – employing a nanny
www.surestart.gov.uk: sure start children’s centres and the services they provide to parents
www.gingerbread.org.uk: local support groups for lone parents
www.lone-parents.org.uk: supporting single parents to return to work
A literature search was carried out using Medline, Cinahl and embase using the following search terms: support in pregnancy, pregnancy and long term conditions, nurse role in support, pregnancy and disabilities, postnatal depression, postpartum depression, myasthenia and pregnancy.
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