Professionals included counselors/therapists, daycare personnel, clergy, and staff at resources centers. Participants were also asked who they would find the most trustworthy in sharing information with them and disclosed doctors , family/other mothers , and friends would be most trusted.Participants were asked if any information could be provided during recruitment to help them make the decision of whether or not to enroll in a 10-year research project that includes data collection from them and their children. Specifically, participants wanted to know more information about data collection, including procedures related toneuroimaging such as magnetic resonance imaging , bio-sampling, and frequency of procedures.Participants also explained that they wanted to know additional information about the purpose of the study with participants explaining that they wanted an explanation of the research study in its entirety and how it related to child development. Another area that participants explained they needed more information about was study logistics with participants explaining they would like to know the location of the study and commitment involved with being in the study. In terms of research commitment, one participant shared needing to know “… times and dates to make sure everything is scheduled right … trying to get a couple of days in at the job and … just timing stuff.” Participants were also asked if there was anyone they would need to speak with to make a decision about enrolling in research involving themselves and their child. Participants indicated they would speak to a variety of key individuals, including their significant other or the biological father of the child , family members , and medical personnel .Participants also discussed barriers to joining a research study.
Participants reported that a busy schedule could make it difficult to join a research study. This includes challenges regarding the time commitment for the study and also balancing their work schedule around research study demands. Other barriers included transportation difficulties , travel time and location of the study ,indoor grow cannabis and having childcare while participating in research activities . Many comments from participants regarding barriers were concerns about taking part in a research study. Primary concerns included potential risks to the fetus/child both during pregnancy and after the child is born. One participant explained, “Just making sure no harm to the baby … I mean I understand the blood samples but just making sure it’s 100% safe.” Other concerns included ensuring that participant personal and research information was kept confidential as well as understanding the invasiveness of biospecimen collection .Additional advice was collected from participants regarding what would help them stay in a research study after enrollment. Participants reported a variety of research supports that would be helpful to stay in a research project . Specific research supports included providing childcare during data collection, compensation for time spent in research, and provision of transportation as needed for families. Related to this theme, one participant explained that “… childcare onsite is probably a huge one” and another participant reported that “transportation would be very helpful.” It was also explained that specific research study logistics are important to consider in supporting participants to stay in a research study . These included receiving regular research updates including the benefits of the study, having well-trained research staff, research staff engaging in regular contact with participants, families being close to the research/data collection site, and families being provided advanced notice of data collection.
Recruiting a representative sample of pregnant high-risk participants for a longitudinal study is challenging. However, considering promotion strategies, it is evident that there are a number of avenues whereby researchers may have success both finding and creating contact points with high-risk participants. Our findings illustrate how the construct of research promotion is multifaceted. Responses from interviews included three major factors: the location where research material is shared, the type of material used, and the person sharing the research material all potentially impact marketing success. Considering recruitment locations, participants frequently recommended social media, followed by medical offices, and community/state agencies. In regard to social media, studies have increasingly indicated social media as a key location to gain access to individuals who may be harder to reach, including high-risk individuals . Additionally, marketing through social media can contribute to reduced recruiting costs, shorter recruiting periods, and better population representation . Social media has become increasingly common as a major component of research recruitment strategies in recent years. Television commercials, brochures, and radio ads were the three most often recommended mediums. These more traditional marketing methods have been used in research for decades; however, barriers in the use of television and radio advertisements have become more relevant in recent years. For example, many of those who watch television have begun resorting to streaming services. These streaming services often allow users to skip ads, or even remove ads all together. Additionally, online radio services with ad-free options have become increasingly common . However, although these trends are occurring in the general population, less is known regarding how changes in television and music consumption have changed specifically for pregnant and parenting women with SUD.
Medical personnel, family members, and friends comprised the limited sources for trusted information on research studies for participants. This suggests close interpersonal relationships are important to consider during recruitment. Moreover, doctors and nurses may be successfully engaged in the recruitment process where feasible. This is consistent with research Newington and Metcalfe showing that forming collaborations with trusted medical professionals aided in both identifying and gaining access to eligible, hard-to-reach participants. Adding to support this,growing cannabis when asked who they would trust the most to receive research recruitment information materials from, the most common answer among participants was doctors.The decision to enroll in a long-term research study with few or no direct benefits for participants is complex and multifaceted . For pregnant and parenting women who use drugs and/or alcohol, the decision can be further complicated by concerns about privacy and safety, logistics related to participation, and details about study procedures and how they relate to child development. The interview and focus group responses from our participants indicated that comprehensive information about specific study procedures and the purpose of the study was most important for informing research participation, with particular interest in understanding the commitment and burden associated with participation. Additionally, almost a third of participants reported concerns about safety and invasiveness of study procedures, particularly the risks to their child, as well as concerns about confidentiality and maintaining the privacy of their personal information. In addition to the concerns about privacy, participants expressed a desire for reassurance that they could trust the research team, and to that end, it was important that study procedures were clearly explained so that they could weigh the risks of participating with potential benefits. This speaks to the importance of autonomy in decision making and informed consent practices, whereby participants’ ability to weigh the costs and benefits of participation and to make the decision for themselves should be valued and respected . Interestingly, when participants were asked about factors that would influence motivation to participate in nontherapeutic research, a number of participants spoke about understanding the perceived benefits for others as well as for themselves. Consistent with previous research showing that altruism was a key motivator for research participation , current participants indicated that “helping other moms in the future” was an important factor in driving motivation. Specifically, participants explained that related to others, they wanted to know more about how research knowledge could support other participants and children as well as how physicians could support young children and families. Although altruism has been associated with positive health benefits , the indirect benefits of charitable helping, such as positive mood and enhanced meaning, can be difficult to articulate and capture, especially when the help provided does not have a clearly defined beneficiary or observable impact . Notably, altruistic motivation was more likely to occur among participants who were better informed about research generally and what might be gained through research participation at the level of the community or society more broadly .
These findings suggest that altruism is a motivating factor that could be more directly addressed in marketing and informed consent processes, with additional information provided to potential participants about the value of research participation more generally, as well as how participants’ specific data will help others, as much as it can be known or anticipated. Direct compensation for participating was also identified as an important factor in deciding whether to participate in research. The decision to participate in research is shaped by personal situations and life factors, in particular, money and time. Even among participants who reported altruism as a motivating factor, many expected a mutually beneficial interaction that both contributed to the betterment of society and compensated them directly . Previous research has shown that participants who are older or have financial hardship were more likely to expect a direct material compensation for participation . If the real costs of study participation are not covered, then study participation can add to an already financially burdened household. In attempting to recruit high-risk or vulnerable populations into research, it is important to consider material compensation as both a motivating factor and a factor that reduces barriers to participation in the context of socioeconomic hardship without introducing undue coercion. A number of participants spoke of concerns about balancing research participation around their work schedules, as well as the costs associated with participation in terms of time, transportation, and childcare. Thus, consistent with previous research with vulnerable populations , compensation that adequately compensates time , effort, and inconvenience is an important factor for motivating enrollment, with special attention given to unique participant needs and preferences regarding type of incentive . Transportation has also been identified as a barrier in multiple studies involving high-risk families , and providing transportation is necessary to ensure a diverse sample.One of the most common threats to internal validity to any longitudinal research is attrition and loss to follow-up bias. Therefore, the thoughtful implementation of retention strategies can prove critical for conducting research among high risk populations . In regard to such strategies, three major themes emerged when considering how to enhance study retention: specific supports that can help participants remain in the research study, barriers to be aware of that can potentially make it difficult to continue study participation, and the best channels for staying in contact with participants over the course of the study. Participants most often reported needs of support in areas of childcare, transportation, and being compensated for their time. These findings align well with previous research, as childcare and transportation needs tend to be more common among vulnerable populations . As such, offering support in terms of transportation assistance and compensation could prove beneficial in terms of retention. Additionally, many participants recommended home visits by research staff as a potential solution to transportation and childcare barriers. However, it should be noted that while home visits may aid in reducing potential barriers, a number of participants in the current study voiced that they would not feel comfortable with individuals coming in their home. Therefore, prior to the use of home visits, researchers must ensure that families feel comfortable with visits taking place within the home or consider giving participants an option of laboratory-only visits. These options support participant decision-making, a recurring theme among participants.Logistical factors mentioned to increase retention included providing participants with regular research updates, advanced notice for study appointments, and a sense of familiarity with research staff. In line with these recommendations, studies that consistently engage with participants via appointment reminders and research updates can foster a sense of anticipation and progress in participants . Moreover, a number of researcher characteristics can contribute to participant engagement and retention including being well experienced with the services provided/research protocols, flexibility, being nonjudgmental, and being culturally competent.High-risk participants often face a disproportionate number of barriers to remaining engaged in research studies. Indeed, it has been documented that retention rates for vulnerable families are often mitigated by higher instances of unpredictable negative life events while possessing fewer resources to compensate for them . Additionally, it has been found that low-income, high-risk families tend to move more often than those in elevated SES categories, while also being at a higher risk for experiencing evictions and homelessness .