Perinatal Care for Women with Spinal Cord Injury Workshop 2013
A one-day workshop was held in November 2013 involving consumers, clinicians and researchers with an interest in sexuality, spinal cord injury (SCI), fertility and reproductive health. Funded by a grant from the Rick Hansen Institute, the goal of the workshop was to initiate a collaborative process for addressing the significant gaps in knowledge and services for women with SCI. The workshop was organized and facilitated by Dr. Stacy Elliott, Kate McBride, Shea Hocaloski, Melanie Basso, Karen Hodge and Lynsey Hamilton.
Prior to the workshop the project team conducted an online survey amongst identified content experts and stakeholders from across Canada. 19 respondents (63%) completed the survey. The survey collected information about priorities and needs in each perinatal phase: preconception, pregnancy, labour and delivery and postpartum.
Through a series of facilitated discussions, workshop participants validated three themes that emerged from a synthesis of survey responses: a lack of Knowledge both for consumers and care providers, gaps in Access to services and information, and a need for Collaboration both between the consumer and health care providers and amongst health care providers throughout the perinatal journey. In addition, the survey identified many unanswered research questions and the need for social/policy change.
Workshop participants envisioned a “roadmap” that would guide and empower consumers, their families, and health care providers at all stages of the perinatal journey. Creating the roadmap would “connect the dots” in the journey, link resources that are already available, and establish a collaborative framework for addressing the remaining gaps. This roadmap would allow consumers to: identify where they are in their perinatal journey; determine what information they need to know and/or ask at each stage; thereby promoting access to the resources necessary and increasing the likelihood for a positive outcome, regardless of their geography.
It is rare to help a group of individuals join together who represent a varied number of organizations, backgrounds, personal and professional experiences, but who have a vested interest in improving the perinatal care of women with SCI. One participant on the day referred to the “great energy, great knowledge” in the room.
Overall it is the connections that were made during the workshop that will be invaluable to future perinatal care for women with SCI. The general consensus of the workshop participants was that the day was one of inspiration and hope for the future..
A survey amongst attendees of the workshop demonstrated the hopes and expectations participants brought to the day “to create inspiration and motivation” “coming together to make a difference”.
In testament to the enthusiasm of the group 16 of 22 respondents rated the workshop as excellent in meeting their expectations.
Many participants commented that the presentations by our two consumer representatives had been compelling and helped to remind the group of the reason they had come together: “the presentations by Karen and Teri were very powerful.
90% of respondents agreed that the workshop had increased their understanding of perinatal care for women with SCI while 100% agreed that it increased their desire to collaborate on this important topic, one participant reflected on “the positive and collaborative spirit of all participants”.
Working group members identified the following ideas for action to maintain and build upon momentum from the workshop:
- Maintain the workshop collaboration as an “Interest Group” or working group to continue progress
- Draft a conceptual Roadmap (“pathway”, “checklist”); include what we know and identify gaps.
- Determine potential publications and identify key journal(s)
- Develop dissemination strategies for consumers
- Explore possibilities of developing resources for consumers
- Identify other potential stakeholder groups for future collaborations
Dr Stacy Elliott, MD
Sexual Medicine Consultant, GF Strong Rehabilitation Centre
Medical Director, BC Centre for Sexual Medicine
Director, Vancouver Sperm Retrieval Clinic, Vancouver General Hospital
Kate McBride, RN, BSN, CRRN
Sexual Health Clinician
Coordinator, Sexual Health Rehabilitation Service, Blusson Spinal Cord Centre
Melanie Basso, RN MSN PNC(C)
Senior Practice Leader - Perinatal
BC Women's Hospital and Health Centre
Shea Hocaloski, RN, BtechN
Sexual Health Clinican
Sexual Health Rehabilitation Service & Vancouver Sperm Retrieval Clinic, VGH
Knowledge Translation Specialist
Rick Hansen Institute