Why NAS? Proposed Program

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1 Focus Groups Provide Insight into Neonatal Abstinence Syndrome in Eastern Kentucky By Big Sandy Neonatal Abstinence Syndrome Prevention Team as part of Appalachian Leadership Academy for Public s Health What is ALAPH? Appalachian Leadership Academy for Public s Health (ALAPH) is a health leadership program that works to assist cross sector teams in developing action plans that drive community change, address critical heath issues, strengthen local partnerships, and measure progress towards improving community health. The program is funded by The National Leadership Academy for Public s Health and the CDC. NLAPH began accepting applications in April 2016 for ALAPH, and four individuals were accepted to form a Big Sandy team. The team members include representatives from Highlands Regional Medical Center, Johnson County Health Department, Cabinet for Health and Family Services, and Passport Health Plan. The team was tasked with the creation of a program that would combat substance abuse or the effects of substance abuse in our community. For the past ten months, team members have met monthly in work sessions and in coach meetings, created program outlines, researched substance abuse issues, and interviewed health professionals. As a result, the Big Sandy Neonatal Abstinence Prevention Team was formed. Why NAS? Neonatal Abstinence Syndrome, more commonly known as drug withdrawal in newborns, is a serious issue in the Big Sandy Region and the rest of the state. In 2000, fewer than 30 infants were born with NAS in Kentucky. In 2014, that number was more than 1400, according to DPH. A recent research letter in JAMA Pediatrics states that Kentucky had more than twice the national rate of drug-dependent babies in 2013, the most recent comparable year (15.1 cases per 1,000 live births). 1,234 drug-dependent infants were reported to the state health department in the year ending July 30, Big Sandy area health care providers, social services, and school systems have noticed this dramatic increase in NAS children, as the substance abuse epidemic continues to worsen. The Big Sandy NAS Prevention Team hopes to decrease the rates of NAS births via community education, policy change, and pregnancy prevention in addicts. We believe that if given the education and appropriate options, women will choose to delay pregnancy until they have recovered from addiction. Preventing pregnancy in addicts will decrease the number of infants born with NAS (and numerous mental and physical health problems that persist later in life as a result) as well as decrease the number of children living in poverty. Proposed Program Over the course of ALAPH trainings and work sessions, the Big Sandy NAS Prevention Team created a plan of action: Create a program that would counsel, educate, and provide family planning for incarcerated or at-risk addicts.

2 The program goals also included increased public awareness of NAS, creating a sustainable program with appropriate staffing and funding for the future, and extending the program to other counties in the Big Sandy Region. During the planning process, we decided to consult doctors that work closely with the issue and allow the community to provide input on the program. What we discovered was discouraging; While people that work closely with addicts or NAS infants understand the enormity of the issue, most community members do not. While the team, consultants, and community leaders believed they knew what could be used to address the problem, only potential participants in the program would know what would truly work to discourage drug use while pregnant. The team decided to interview the at-risk population (addict women of childbearing age) in focus groups. By allowing potential participants to help shape the program, we would elevate its chances of success. NAS Focus Groups Focus groups were conducted with two groups of women in the program s target population: participants in Community of Hope and residents of Serenity House. Community of Hope is an intensive treatment program for women addicted to alcohol and/or other drugs. They provide educational activities, group and individual counseling, parenting classes and more to women that are attempting to maintain or regain custody of their children. Serenity House is a residential treatment facility for pregnant females who are currently using opiates. Questions for the group included: What do you know about NAS? Do you see NAS as a problem?

3 What do you think can be done to prevent NAS? What would have made a difference for you? Was your pregnancy planned? Were you under the impression that your baby would not suffer withdrawal? What forms of education would work for you? Do you think the proposed program would work? Facilitating team members were astounded by the openness and honesty of the participants. Each spoke about their experiences, their prenatal and addiction care, and what would and would not work as a prevention program. The focus groups lasted over two hours each, and were guided open discussions instead of direct question and answer sessions. Participant Feedback Participants feel misinformed by Medication-Assisted Treatment (MAT) doctors and medical staff. Many stated that doctors had told them there were no long term effects of NAS. Prescribers of Suboxone and Subutex told many that their babies would not withdraw from Subutex, often adamantly and at every appointment. Many felt forced to take Subutex, and were told it was a safe alternative to drug use for their children. Participants said that although MAT is meant to wean them off drugs, doctors are not offering patient care plans or attempting to lower prescriptions. One of the participants had been using Suboxone for six years. They believe that MAT doctors care more about making money than curing addiction. Participants believe there is a disconnect between doctors of different specialties. While Pediatricians tell them Subutex causes NAS in newborns, doctors prescribing Subutex tell them it doesn t. An OBGYN that cares for the baby before birth believes in different treatment than the Pediatrician. Many of the participants believe that it is harder to stop use of Suboxone than regular opioids. Participants often fear or are untrusting of medical professionals. In both focus groups, participants stated that women in their situations often do not visit a doctor for prenatal care for fear of being turned in to social services. They will sometimes drive out of state to give birth because they believe their children will not be taken from them in that case. Multiple participants felt that while their OBGYNs knew they were addicted to drugs, they ignored the issue and did not offer help. One participant stated that her OBGYN did have a counselor on site, but they only asked if she wanted to kill herself or her baby and then released her. They believe the NAS scoring system is hospitals is unfair and too objective; one nurse may score a child as NAS and another may not.

4 Participants had little to no education about NAS. Prior to giving birth to their first addicted newborn, most did not know the effects of NAS (short or long term). Participants stated that many women believe quitting drugs cold turkey would cause their babies to die before birth. While the majority of the women had given birth to addicted babies, they did not know about the breadth of the issue. One had viewed a recent segment on WYMT, but most admitted that they were uneducated. Serenity House staff also feel uneducated. They have attended one NAS training about what to expect with NAS infants, but they did not know how prevalent it is or the choices addicts have to prevent it. Participants knew of no existing NAS prevention programs. Participants are not confident in the program we had envisioned. Many participants did not think a birth control program would work. They fear IUDs and may not be diligent about taking a birth control pill daily. One participant said that many addicts want children, regardless of NAS risk, to stay on government benefits. Flyers and pamphlets would not work well to educate them. Most thought these would help, but may not be the most effective form of educating at risk women. They usually do not pick them up. Participants had many suggestions for NAS prevention, including: PSAs and other educational videos playing in doctors offices, waiting rooms, hospital rooms, and on local television channels. Participants suggested using women that have birthed NAS babies in PSAs, as their stories would affect them more than general education. NAS support groups for parents and grandparents with referrals from the local health departments and other healthcare providers. Offering incentives to attend support groups or NAS classes, such as the ones they have for HANDS. After attending five classes, participants receive a gift card. NAS education for high school students in health or life skills classes. NAS education in HANDS program home visits. NAS education from OBGYN physicians. A NAS specialist in the area that can teach addicts, bridge the disconnect between doctors and specialties, train substance abuse counselors and educate the public. Substance Abuse/NAS Peer Support Counselors in doctors offices. Safely weaning women off drugs during pregnancy. Policy change o Participants suggest that there should be a limit to the number of Suboxone clinics per county, and that doctors should have to prove that they are creating patient care plans and are attempting to wean patients off of Suboxone.

5 o Participants believe that doctors should be better trained on addiction and the proper use of Medication-Assisted Treatment. o Some participants believe that Suboxone doctors should require the use of birth control before prescribing. Often, people that would benefit from social programs aren t used in shaping them. Participants were interested in helping to create a program, and now feel as though they hold a stake in its success. The Big Sandy NAS Prevention Team found these focus groups to be an enlightening experience, and will use the feedback in future NAS prevention endeavors. Next steps Through interviews with providers, focus groups with mothers, research, and hospital data, an abundance of information about NAS in the region has been gathered. The Big Sandy NAS Prevention Team knows that in order to achieve lasting improvement, we need policy change, buy-in from political leaders, community education, and more cohesive medical care for addicted mothers. As a team of four individuals, achieving all of these goals is impossible. In the coming months, we hope to expand our team into a NAS prevention coalition, host a NAS forum to bring providers, counselors, and community leaders together, and advocate for policy change. We will also continue community NAS education through the creation of public service announcements and education at community events.