Media
We don't want women to be alone': Halifax group creates guide for females released from prison
Halifax Metro, May 12, 2016Online
Doucette’s situation is one many women often find themselves going through upon finishing their jail sentence in Nova Scotia, according to Martha Paynter, the coordinator of Women’s Wellness Within. Part of the Women’s Legal Education and Action Fund, Women’s Wellness Within provides care for incarcerated women and expectant mothers. It is behind the creation of a new community resource guide for women released from jail in Halifax, designed to help them start their lives after post-custody. Paynter said the guide was created after listening to the women held in the Central Nova Scotia Correctional Facility, a jail in Burnside, who wanted a better understanding of the resources available to them once they are released. “The guide looks at everything from housing to healthcare to employment,” Paynter said Thursday. “The things that you need when you're released and you're alone.”...
Where to Go for Help in HRM: A Resource Guide for Women.
Published by Halifax LEAF
May 12, 2016
Where to do for help in HRM
URL: http://www.leaf.ca/leaf_halifax_community_resource_guide/
Understanding sickle cell carrier status identified through newborn screening: a qualitative study
Published by European Journal of Human Genetics
2010 The expansion of newborn screening (NBS) is increasing the generation of incidental results, notably carrier results. Although carrier status is generally understood to be clinically benign, concerns persist that parents may misunderstand its meaning, with deleterious effects on children and their families. Expansion of the NBS panel in Ontario, Canada in 2006 to include sickle cell disorders drew attention to the policy challenge of incidental carrier results. We conducted a study of consumer and provider attitudes to inform policy on disclosure. In this paper, we report the results of (i) qualitative interviews with health-care providers, advocates and parents of carrier infants and (ii) focus groups with new parents and individuals active with the sickle cell community. Lay and provider participants generally believed that carrier results were clinically insignificant. However, some uncertainty persisted among lay consumers in the form of conjecture or doubt. In addition, consumers and advocates who were most informed about the disease articulated insistent yet dissonant claims of clinical significance. Meanwhile, providers referenced research knowledge to offer an equivocal assessment of the possibility and significance of clinically symptomatic carrier status. We conclude that many interpretations of carrier status are in circulation, failing to fit neatly into the categories of ‘clinically significant’ or ‘benign.’ This creates challenges for communicating clearly with parents – challenges exacerbated by inconsistent messages from screening programs regarding the significance of sickle cell carrier status. Disclosure policy related to incidentally generated infant carrier results needs to account for these complex realities.
URL: http://www.nature.com/ejhg/journal/v18/n3/abs/ejhg2009173a.html
Health-care providers' views on pursuing reproductive benefit through newborn screening: the case of sickle cell disorders
Published by European Journal of Human Genetics
2012 Newborn screening (NBS) programs aim to identify affected infants before the onset of treatable disorders. Historically, benefits to the family and society were considered secondary to this clinical benefit; yet, recent discourse defending expanded NBS has argued that screening can in part be justified by secondary benefits, such as learning reproductive risk information to support family planning (‘reproductive benefit’). Despite increased attention to these secondary benefits of NBS, stakeholders’ values remain unknown. We report a mixed methods study that included an examination of providers’ views toward the pursuit of reproductive risk information through NBS, using sickle cell disorder carrier status as an example. We surveyed a stratified random sample of 1615 providers in Ontario, and interviewed 42 providers across 7 disciplines. A majority endorsed the identification of reproductive risks as a goal of NBS (74–77%). Providers’ dominant rationale was that knowledge of carrier status is an important and inherent benefit of NBS as it allows people to make reproductive choices, which is consistent with the goals of disease prevention. However, some challenged its appropriateness, questioning its logic, timing and impact on disease prevention. Others were sensitive to intruding on individuals’ choices or children's independent rights. While the dominant view is consistent with discourse defending expanded NBS, it deviates from the traditional screening principles that underpin most public health interventions. Broader discussion of the balance between benefits to screened individuals and those to families and societies, in the context of public health programs, is needed.
URL: http://www.nature.com/ejhg/journal/v20/n5/abs/ejhg2011188a.html
Health-care providers’ views on pursuing reproductive benefit through newborn screening: the case of sickle cell disorders
Published by European Journal of Human Genetics
2011 Newborn screening (NBS) programs aim to identify affected infants before the onset of treatable disorders. Historically, benefits to the family and society were considered secondary to this clinical benefit; yet, recent discourse defending expanded NBS has argued that screening can in part be justified by secondary benefits, such as learning reproductive risk information to support family planning (‘reproductive benefit’). Despite increased attention to these secondary benefits of NBS, stakeholders’ values remain unknown. We report a mixed methods study that included an examination of providers’ views toward the pursuit of reproductive risk information through NBS, using sickle cell disorder carrier status as an example. We surveyed a stratified random sample of 1615 providers in Ontario, and interviewed 42 providers across 7 disciplines. A majority endorsed the identification of reproductive risks as a goal of NBS (74–77%). Providers’ dominant rationale was that knowledge of carrier status is an important and inherent benefit of NBS as it allows people to make reproductive choices, which is consistent with the goals of disease prevention. However, some challenged its appropriateness, questioning its logic, timing and impact on disease prevention. Others were sensitive to intruding on individuals’ choices or children's independent rights. While the dominant view is consistent with discourse defending expanded NBS, it deviates from the traditional screening principles that underpin most public health interventions. Broader discussion of the balance between benefits to screened individuals and those to families and societies, in the context of public health programs, is needed.
URL: http://www.nature.com/ejhg/journal/v20/n5/abs/ejhg2011188a.html
Consent for Newborn Screening: The Attitudes of Health Care Providers
Published by Public Health Genomics
2009 Background: As newborn screening (NBS) expands to meet a broader definition of benefit, the scope of parental consent warrants reconsideration. Methods: We conducted a mixed methods study of health care provider attitudes toward consent for NBS, including a survey (n = 1,615) and semi-structured interviews (n = 36). Results: Consent practices and attitudes varied by provider but the majority supported mandatory screening (63.4%) and only 36.6% supported some form of parental discretion. Few health care providers (18.6%) supported seeking explicit consent for screening condition-by-condition, but a larger minority (39.6%) supported seeking consent for the disclosure of incidentally generated sickle cell carrier results. Qualitative findings illuminate these preferences: respondents who favored consent emphasized its ease while dissenters saw consent as highly complex. Conclusion: Few providers supported explicit consent for NBS. Further, those who supported consent viewed it as a simple process. Arguably, these attitudes reflect the public health emergency NBS once was, rather than the public health service it has become. The complexity of NBS panels may have to be aligned with providers’ capacity to implement screening appropriately, or providers will need sufficient resources to engage in a more nuanced approach to consent for expanded NBS.
Clinical obligations and public health programmes: healthcare provider reasoning about managing the incidental results of newborn screening
Published by Journal of Medical Ethics
2009 Background: Expanded newborn screening generates incidental results, notably carrier results. Yet newborn screening programmes typically restrict parental choice regarding receipt of this non-health serving genetic information. Healthcare providers play a key role in educating families or caring for screened infants and have strong beliefs about the management of incidental results.
Biography
I am a student nurse in the accelerated program at the Dalhousie University School of Nursing. I hold a Master’s in Health Research Methodology from McMaster University, a Master’s in Development Economics from Dalhousie University, and a Diploma from the Ontario Training Centre in Health Services and Policy Research. My research interests include perinatal health of criminalized women in Atlantic Canada, access to reproductive health services, and human milk donation. Prior to nursing school, I worked for eight years in health services management for the Departments of Health in NB and NS. I am a research coordinator at the Salhousie School of Nursing. I chair the Halifax branch of LEAF, the Women’s Legal Education Action Fund. Through LEAF and in partnership with the Chebucto Family Centre in Spryfield, NS, the Elizabeth Fry Societies in NS, and the IWK Health Centre Community Midwives, I coordinate an interprofessional program to provide perinatal and parenting support to women in correctional facilities in NS, called Women’s Wellness Within. Since 2009, I have served as a volunteer doula for low-income and newcomer mothers in Halifax. In 2012, I started a weekly postpartum and breastfeeding support initiative in the North End of Halifax that continues to flourish. I have two fierce and funny daughters. I am becoming a nurse to develop my clinical capacity and professional foundation to serve women’s health care needs through research, advocacy, and practice.
Additional Titles and Affiliations
Women's Wellness Within: Board
Milk Bank Working Group : Member
IWK Hospital/Chebucto Family Centre : Volunteer Doula
Halifax Women's Legal Education Action Fund : Chair
Dalhousie University Nursing Society : VP Community Affairs
Past Talks
LEAF Halifax Persons Day Breakfast
LEAF Halifax Persons Day Breakfast
Saint Mary's Boat Club, October 14, 2016