| Abstrakt: |
BACKGROUND: Much is known about pregnancy in the context of multiple sclerosis (MS); however, the use of increasingly complicated disease-modifying treatments (DMTs) means clinicians are facing greater challenges in the way pregnancy education is provided and maternity care coordinated for women with MS. Little is known of the experiences and expectations of New Zealand (NZ) women with MS, prenatally, during their pregnancy, and in early parenthood. The researchers (MS clinical nurse specialists, Auckland Hospital) regularly educate and advise women with MS and their lead maternity carers on how to navigate pregnancy around MS DMTs. A lack of trustworthy, easily available information for women with MS and their maternity teams was identified. This was supported by negative feedback from service users regarding their previous experience in the NZ maternity system and frequent expressions of frustration about the contradictory information available, both online and within the health service, to women with MS when planning a pregnancy. OBJECTIVES: The researchers hoped to better understand common expectations around maternity care for women with MS in NZ and to develop strategies that might enhance the pregnancy experience from prenatal education through postpartum care and parenthood. To make meaningful changes, the need to learn from the experiences of recent users of services was identified. METHODS: The researchers, in partnership with the MS Auckland, undertook a qualitative research project using a person-centered codesign process. Journey-based interviews with 10 women with MS who had been through a pregnancy in the preceding 5 years were undertaken and themes identified. Following the interviews, a codesign workshop, attended by 7 women and partners who were planning a future pregnancy, was held to canvas their expectations of future care. RESULTS: Feedback from interviews and workshops was divided into 3 target groups: women with MS and their families, maternity providers, and primary care postpartum health providers (general practitioners and providers with Plunket, NZ's child welfare service). Bespoke educational material for each group was developed and added to the MS Society NZ website. Links to international guidelines and best practices for lead maternity carers and non-MS specialist medical teams are signposted. In addition, interservice practices for educating and monitoring women with MS in the Auckland area from prenatal education through pregnancy to postnatal care and parenthood were reviewed and protocols for interdisciplinary care were developed. CONCLUSIONS: Women with MS and their maternity care teams have educational needs throughout the pregnancy trajectory. By designing solutions alongside women with MS in NZ, a local repository of accessible, up-to-date, and accurate information for women and their maternity care team now exists so those receiving and providing care can feel more confident as they navigate this life event. [ABSTRACT FROM AUTHOR] |
