Introduction
This is the first blog in a series to begin a dialogue with IFNA members about the importance of the context of policy for research, practice, and education.
This dialogue begins with a discussion of Why Policy Matters and includes examples from the United States (U.S.) of how the policy context affects outcomes for families. Future discussions will define science policy and its impact on research; explore policy makers’ expectations; describe a framework for presenting the outcomes and impact of research and practice to all stake holders; and establish social and political will to advance the health and well-being of families. We will include examples in these discussions of IFNA members informing policies around the world.
This series is developed on the premise that to meet the core values and vision of IFNA, it is essential that we assume the role of advocates to inform and change policy to advance the health of families worldwide. The core values of IFNA are “embraces a compassionate family focus on health, social justice, human dignity, and respect for all.” Our vision is “Nurses transforming health for families worldwide.”
Why Policy Matters
While, many nurses focus their practice at the personal health level, it is essential for all nurses to recognize that national, state, and institutional level policies are determinants of health and social outcomes of families (Feetham, 2005). The outcomes of our research on and among families will be limited unless it is conducted with knowledge of the policy context and with the intent to inform policy (Feetham, 2018).
The U.S. Centers for Disease Control and Prevention (CDC) identifies five groups of factors that serve as determinants of health: one’s biology and genetics such as age and sex; individual behaviors such as substance use; the social environment in which one interacts with others; the physical environment in which one lives; and the health services which one has or does not have access to, as well as the quality of those services (CDC, 2014). The interdependence of policy with determinants of health is supported by the United States’ Healthy People 2020 initiative which cites policy as a primary determinant of health given its role in affecting other determinants of health (Healthy People 2020, n.d.).
Public policy can include policies affecting the health and social outcomes of families and influence the availability of resources for families. Examples from the U.S. federal and state governments of these policies include family care policies that protect individuals’ jobs, child care subsidies, the availability of early childhood education, school schedules, and tax incentives (The National Academies Press, 2016). Policies such as these and others drive social determinants of health and can affect the health and well-being of children and families. For example, state and city policies governing public transportation can affect access to care when limited routes isolate communities, schedules restrict availability, and high fares are unaffordable. This is important to recognize when caring for children or adults with chronic conditions. Transportation policies that restrict or facilitate access to care can influence whether the care recipient appears adherent to care and follows-up on care recommendations. A more striking example is how further changes, or even jurisdictional invalidation of the Patient Protection and Affordable Care Act (ACA) in the U.S. could eliminate families’ health insurance coverage and care for pre-existing conditions (Keith, 2018).
Policy Context
The policy context is evident in the care of children and adults with type 1 diabetes. Between 2002 and 2013, the typical cost of insulin incurred by patients in the U.S. increased from about $40 to $130 per vial. The American Diabetes Association’s (ADA) reported that the cost of insulin results in nearly 25 percent of patients not taking insulin as they should (Campbell, 2018). The rising costs are policy related as evidenced by the difference in the cost of insulin in the U.S. and Canada (Plants, 2017). Anecdotal reports also suggest that sharing scarce insulin resources among family members may be occurring. The ADA recommends that 1) constituents work with local, state, and national representatives to effect legislative change to better regulate pharmaceutical companies and streamline the Federal Drug Administration (FDA) approval processes for generic insulin preparations; and 2) patients and families become involved with advocacy groups and work together to lower insulin prices. Patient-centered and nursing organizations are critical for effecting change. The rising cost of insulin is finally drawing the attention of U.S. policy makers. The U.S. Senate Special Committee on Aging held hearings on this topic in May 2018.
Consider the policies that contribute to hospital admissions that are preventable. When a child with asthma is admitted with status asthmaticus, a person with type 1 diabetes is admitted in ketoacidosis, or children and adults seek care at emergency departments for chronic conditions, do you recognize that their health outcomes are affected by policy? As IFNA members, are you asking families about access to and out-of-pocket costs for their medications? Are you using your voice to communicate with your elected representatives and legislators, using scientific evidence and clinical examples, to advocate for the needs of children, adults, and families?
Conclusion
The key message of this first dialogue in our series is that policy in all countries has a relationship with family health and outcomes for families worldwide. Active participation in the role of advocate for families requires an understanding of the institutional, state, and national policies that can affect family outcomes. With this understanding, IFNA members can advance family health outcomes and position practice, research, and education to inform policy change and advance policies that benefit families (Bogenschneider et al., 2012).
Suzanne Feetham, PhD, RN, FAAN, has held clinical, research and leadership positions in academia, health systems (Children’s National Medical Center, Washington, DC), the Federal government (U.S. Department of Health and Human Services (DHHS), National Institutes of Health (NIH), National Institute of Nursing Research (Deputy Director and Chief of the Office of Science Policy, Planning and Analysis) and Health Resources and Services Administration (HRSA). Her career has focused on health care to families and underserved populations and health policy.
