Beliefs and willingness towards participating in genetic testing for depression in low-income and racial/ethnic minority mothers at-risk

Abstract

Purpose:

To identify mothers’ salient normative, behavioral and control beliefs and willingness towards participating in genetic salivary testing for depression.

Design:

A qualitative, descriptive design was employed. 41 multi-ethnic mothers completed surveys that underwent directed content analysis according to The Theory of Planned Behavior. Percentages and frequency counts were used to categorize responses and calculate willingness.

Findings:

Salient beliefs included: Behavioral: Finding a cure/treatment for depression (29.3 %), Normative: Family would approve (46.3 %), and Church associates would disapprove (19.5 %). Control: Lacking information/explanations (34.1 %) as barriers, convenient locations (24.4 %) as facilitators. Most mothers indicated a willingness to participate (90.2 %).

Conclusions:

Interventions should target families, emphasize benefits, explain purposes and procedures, and use community based participatory methods.

Introduction

Depression is a serious mental illness defined by its symptoms that include psychomotor retardation, sleep disturbances, depressed mood, loss of appetite, and feelings of hopelessness, helplessness, worthlessness and guilt (Beck, 1967, 1999; Radloff, 1977). In published studies, between 19 % and up to 75 % of low-income(Chaudron et al., 2005; De Luca et al., 2018; McDaniel & Lowenstein, 2013; Peden et al., 2004) and ethnic/minority (Atkins, 2015, 2017; De Luca et al., 2018; Marsiglia et al., 2011) mothers report high levels of depressive symptoms that warrant evaluation by a psychiatric specialist to determine if clinical depression is present. These rates are nearly triple the rate of depression found in the general population of women in the United States (US) (8.7 %) (National Institute of Mental Health, 2019). Recent reports also indicate a rise in the prevalence of major depression among younger populations and those with lower income levels in the United States (Brody et al., 2018; Weinberger et al., 2018). Depressed mood in these mothers is often predominantly accompanied by feelings of sadness, anger, loneliness and fatigue along with crying episodes (Atkins, 2015, 2017; McDaniel & Lowenstein, 2013). Low-income or racial/ethnic-minority mothers often do not seek treatment. Hence, symptoms become chronic and produce devastating, negative health effects for single mothers who have poorer health and are more likely to engage in unhealthy behaviors (Atkins, 2010). The children of these mothers are also affected as they experience poorly managed chronic health conditions, lower academic performance, behavioral problems, delayed emotional (Pietikäinen et al., 2020) and cognitive development and higher levels of mental illness when they become adults (Atkins, 2010; Compas et al., 2011; Feder et al., 2009; McDaniel & Lowenstein, 2013). Research aimed at preventing depression in samples representative of this population of mothers at risk is necessary for avoiding these deleterious effects in disadvantaged families.

To enhance the effectiveness of preventive interventions for mental illness, The National Advisory Mental Health Council’s (NAMHC) Genomic Workgroup recommends that researchers conduct comparative studies in diverse populations to capture genetic variations (National Institute of Mental Health, 2017). The inclusion of diverse populations allows for an understanding of individual variability in gene expression in different social, geographic, and interpersonal environments. This inclusion is necessary for equitable and scientific progression in the distribution of personalized or precision medicine, thus, improving the accuracy of identifying individuals who are at greater risk for health disorders, and as a result can initiate targeted prevention and treatment strategies (Bentley et al., 2017; Fisher et al., 2020; Mersha & Abebe, 2015; National Institutes of Health, n.d., 2020).

Despite these recommendations, current reviews reveal limited ancestral diversity in samples for Genome-Wide Association Studies (GWAS) (GWAS Central, 2021; Mills & Rahal, 2019). Most studies have been conducted in persons of predominantly European ancestry (88 %), with a small portion of people with Asian (6 %), African American/Afro Caribbean (2.13 %), Hispanic/Latino (1 %), Mixed/other (0.67 %), African (0.57 %), and Native American (<0.5 %) ancestry (Mills & Rahal, 2019; Popejoy & Fullerton, 2016; Sirugo et al., 2019). Although variability in gene expression exists based on biological sex and, in addition there is evidence of sexual dimorphism in traits for certain medical conditions (Naqvi et al., 2019), diverse groups of females have historically been excluded from basic, preclinical, and clinical experimental studies (Lee, 2018). Most large-scale population genetic studies targeting women in the United States (US), have focused mostly on women who are married and/or White/Caucasian (Arnett et al., 1996; Framingham Heart Study, 2020; National Heart Lung and Blood Institute, 2020), older (Banda et al., 2015) and middle to higher income professionals (Mills & Rahal, 2019; Nurse’s Health Study, 2016). This lack of diversity with regard to ancestry, ethnicity, and socioeconomic status limits the application of the clinical benefits produced from genomic knowledge resulting in economic losses, and increases in morbidity and mortality for underrepresented groups (Erves et al., 2017; Hindorff et al., 2018; Lee, 2018). Clearly, genetic samples from diverse groups of people are needed to reduce health disparities and improve mental health outcomes among different segments of the population.

The collection of biological samples to conduct omics studies to identify genetic markers associated with the development of depression is growing in the literature (GWAS Central, 2021; Wray et al., 2018). Researchers have identified genetic risk variants of comorbidities associated with major depressive disorder and depressive symptoms (Wray et al., 2018). The samples in these studies contain persons of mostly European ancestry who self-identify as White/Caucasian (Hyde et al., 2016; Wray et al., 2018). Diverse sub-groups of women, such as low-income or racial/ethnic minority young adult US mothers at high risk for depression, are underrepresented in this genetic research for depression that is necessary for investigating ways to prevent and treat depression (Atkins, 2010, 2017; Ridker et al., 2008; Thorp et al., 2020). Individuals who identify with an ethnic/minority group (i.e. Black African, American/Afro-Caribbean or Hispanic) have European, African and Native American ancestry due to genetic admixture (genes are admixed with traits of African and Native American ancestry) (Banda et al., 2015). Hence, inclusion of ethnic/minorities is necessary for diversifying the gene pool. Reasons cited for lack of inclusion and participation of these subgroups in biomedical research in general have been explored in aggregate samples of minority groups of adults and women (George, 2015; Konkel, 2015). Few studies have focused on identifying factors that impact participation in sub-groups of disadvantaged populations such as low-income or racially and ethnically diverse mothers.

Although, it is known that unique beliefs and attitudes towards behaviors influence intentions to engage in the behaviors (Ajzen, 1991, 2014, 2020), few studies have used qualitative methods to examine the beliefs and attitudes that impact psychiatric genetic research participation for diverse sub-groups of women, such as low-income, and/or ethnic minority mothers. For example, beliefs, facilitators and barriers to participation in genetic testing have been explored mostly among aggregate samples of minority groups with reference to non-psychiatric conditions. Beliefs and barriers have been examined in middle aged to older adult African Americans (N = 35) towards sickle cell genetic testing, general biobanking (N = 41) (Cohn et al., 2015) and (N = 35) (Long et al., 2011) and in middle-aged African American women (N = 87) for human papilloma virus and breast cancer genetic testing (Scar-inci et al., 2013; Spencer et al., 2019). Beliefs and attitudes towards breast and ovarian cancer genetic testing has been examined in a sample of mostly middle-aged Hispanic adults (N = 51) and Hispanic women (N = 53) (Kinney et al., 2010; Vadaparampil et al., 2010). Asian Indian and Pakistani adults (N = 32) also reported beliefs and barriers towards genetic cancer screening (Leader et al., 2018). Another study using a large population sample found that mostly young-adult Asian Americans adults (N = 495; Mean age = 37.2 years) were less willing to participate in health research in general compared to African Americans (N = 9516; Mean age = 42.7 years), Hispanics (N = 1889; Mean age = 41.6 years), and Caucasians (N = 4760; Mean age = 46.8 years) (Liu et al., 2019). Beliefs and barriers towards genomic research in general have been examined in multi-ethnic samples of mostly middle-aged Black, His-panic, and White adults (N = 205) (Sanderson et al., 2013) and multi-ethnic samples of high socioeconomic status (Kerath et al., 2013).

Studies that focus on beliefs and attitudes towards psychiatric disorders have been few and have mainly been conducted outside of the United States (Sundby et al., 2019; Wilde et al., 2010). A recent review revealed only one US study that identified the beliefs and attitudes towards psychiatric genetic testing in a sample of 26 mostly middle-aged adults, 18 of whom were male (Lawrence & Appelbaum, 2011). In this study, concerns about potentially harmful study procedures, lack of knowledge about genetics, and issues related to distrust and confidentiality surrounding mental illness status in families were reported as beliefs that affected willingness to participate in genetic research for psychiatric disorders (Murphy & Thompson, 2009).

To date, no studies have explored the beliefs about genetic testing for depression or other psychiatric illness solely among women, or younger, low-income or racial/ethnic minority mothers. The samples in the aforementioned qualitative studies were findings from aggregated samples of ethnic groups of men and women who were mostly middle-age to older adults. The participants’ parenting status, a unique contextual factor known to increase depression risk was not reported and only one qualitative study specifically addressed attitudes towards psychiatric genetic testing. Low-income and/or ethnic minority mothers experience unique psychological and socio-cultural stressors such as financial instability, anger, racism and parenting stressors, violence, complex relationship issues and difficult emotions that increases their risk for developing clinical depression (Atkins, 2010, 2017; Beeber et al., 2008; Broussard et al., 2012). Differing circumstances in diverse environments potentially impact gene expression and alter depression risk (Lopizzo et al., 2015). These stressors further impact their ability to participate in health promoting behaviors to address psychiatric illnesses, such as participation in genetic research necessary for developing knowledge for the prevention and treatment of depression (Atkins, 2010, 2017).

Theoretical background

According to theory, the context specific beliefs that underlie a particular behavior must be ascertained from the target population (Ajzen, 1991, 2014, 2020). The Theory of Planned Behavior (TPB) was used to elicit beliefs about genetic testing in this unique population of mothers. This theory was used to guide the development of the main study questionnaires and guided the analysis and categorization of the subjects’ responses to this questionnaire (discussed below). This theory is a widely used and acceptable theory for understanding an individual’s health behavior, especially with reference to managing depressive symptoms (Keffane, 2018; Logsdon et al., 2013, 2018). According to the TPB, behavioral intentions are the determinants of behavior. Intentions and changes are determined by the theory’s main constructs that include attitude, subjective norms (social norms), and perceived behavior control (perception of barriers or control over the performance of the behavior) towards the behavior of interest (Montaño & Kasprzyk, 2015). The TPB is comprised of constructs that form the basis for an individual’s actual performance of a behavior (Montaño & Kasprzyk, 2015). These constructs include: (a) Behavioral beliefs: (i.e., advantages and disadvantages of a behavior), (b) Normative Beliefs: (i.e., referents or individuals who would approve or disapprove of a behavior), (c) Control Beliefs: (i.e., the power to perform a behavior based on things that are perceived to make it easier or difficult to perform a behavior), and (4) Behavioral intention: (i.e., the willingness to perform a behavior) (Ajzen, 1991, 2020; Montaño & Kasprzyk, 2015). The mother’s responses were also categorized according to the normative, control, and behavioral belief constructs as described later under data analysis.

Purpose

An understanding of the beliefs that influence participation in genetic research of vulnerable sub-groups who are at greater risk for depression will ultimately help researchers target intervention strategies to ensure the inclusion of these vulnerable mothers in vital research aimed at treating depression and reducing depression risk. These mothers can thus benefit from the potential of genomic discoveries (Wray et al., 2018). The purpose of this study is therefore three-fold with three specific aims

1. To identify the behavioral, normative, and control beliefs that impact participation in genetic testing for depression in a sample of young adult to middle aged, low-income and/or racial/ethnic minority mothers

2. To determine mothers’ willingness to provide salivary samples for genetic testing for depression.

3. To measure levels of depressive symptoms to validate the level of depression risk in this subgroup of mothers.

Methods

Design

This analysis was part of a two-phase, larger, pilot study that employed a descriptive, mixed methods, sequential design. This was phase one of this pilot-study whereby salient beliefs were elicited via responses to open-ended questions that were written based on the TPB’s main constructs (Ajzen, 1991, 2020). Qualitative methods were used to code and categorize the subjects’ responses according to the TPB. Quantitative analysis was used to determine the frequency of responses associated with each of the TPB’s main constructs and to analyze subjects’ willingness to provide salivary samples.

Participants

Convenience, purposive sampling was used to obtain a sample of low-income and/orracial/ethnic minority mothers (i.e., White/Caucasian, Black/African American, Hispanic/Latino, Asian/Indian) who would be able to provide detailed responses outlining the beliefs of the target population (Patton, 2015; Wisdom & Cresswell, 2013; Creswell, 2013; Patton, 2015). The sentiments of at least 30 women are recommended by the TPB for eliciting salient beliefs (Ajzen, 1991, 2020; Francis et al., 2004). The authors purposefully went beyond 30 mothers in order to increase representation by each ethnic group. The views of younger to middle-aged adult mothers were being sought. Hence, an age cut-off of 45 was used to target younger women of childbearing age (18–45) who are at greater risk for depression. Mothers were also included if they were from groups historically under-represented in biomedical research (Erves et al., 2017) such as those of low socioeconomic status (low-income; <200 % federal poverty line according to family size) or of racial/ethnic-minority status (Colby & Ortmon, 2015; Department of Health and Human Services, 2020; Obamacare.net, 2020; Roberts et al., 2012). Mothers who had at least one child <18 years of age living with them were also included. Women were excluded if (a) they had a current diagnosis of depression and or were being treated for depression, (b) had a child less than one year of age, or (c) were currently pregnant. Since the focus of this analysis was prevention of depression, women already diagnosed with clinical depression were excluded. We did not include women with children less than one year of age to ensure that those suffering from depressive symptoms associated with pregnancy and recent child birth would not be included. Mothers who could not read or understand English were also excluded since all of the instruments were written in English.

Procedures

After obtaining approval from the University’s institutional review board, recruitment took place in seven different urban community locations in two different states. These locations included a dance school, daycare center, social service agency, low-income housing complex, and three pediatric offices. Before recruitment began, the researchers had collaborative discussions with the owners/directors from each site to explain the study’s purpose and procedures. These owners/directors also encouraged participation among the clients they served by informing them and others about the study and by distributing and displaying flyers at the community locations. Those who inquired attended recruitment sessions that took place weekly over a two-month period. At pediatric offices, women were approached while in waiting areas and after providing written informed consent, completed study packets. In social service agencies and daycare centers, recruitment days and times were scheduled and potential participants were informed of these dates by site owners/directors. Mothers were screened for eligibility and those meeting study delimitations provided written informed consent, completed a demographic data sheet, an open-ended survey to elicit salient beliefs, and a scale to measure levels of depressive symptoms. The participants received $10.00 as compensation for their time immediately after questionnaire packets were completed and returned.

Questionnaires

Three questionnaires were used to address the three aims of this study. One questionnaire elicited salient behavioral, normative and control beliefs. Another questionnaire assessed behavioral intention and a third questionnaire measured levels of depressive symptoms. Two out of three of these questionnaires were developed by the authors for this analysis.

Salient beliefs about DNA sampling

This 9-item, open-ended, free response questionnaire was constructed by the authors based on the detailed instructions specified in The Theory of Planned Behavior (Ajzen, 1991, 2014, 2020) (see Appendix A). Participants responded to questions that asked about their behavioral, control, and normative beliefs about providing saliva samples for DNA analysis for the purpose of examining ways to prevent and treat depressive symptoms. Each question was developed based on one of this theory’s main constructs. This type of questionnaire has been widely used to elicit salient beliefs from multi-ethnic women about a variety of health-related behaviors such as physical activity (Al-Harbi & Al-Harbi, 2017), eating behaviors (Middlestadt, 2012), prescribing practices (Tsiantou et al., 2013), and e-cigarette smoking (Katz et al., 2019).

Genetic (DNA) sampling acceptability questionnaire

Fears about harmful study procedures are commonly reported in Blacks and Hispanic/Latino adults (George, 2015; Murphy & Thompson, 2009; Vadaparampil et al., 2010). To decrease fears, mothers were given a description of the study’s procedures for collecting saliva samples, using this sampling acceptability questionnaire that was constructed by the authors for this study. Willingness to participate in genetic salivary sampling was assessed using this 13-item separate questionnaire that outlined the instructions for providing a DNA salivary sample according to the insertion packet instructions for the Oragene salivary DNA self-collection kit developed by DNA genotek (DNA Genotek, 2013, 2019) (see Appendix B). This test kit is widely used and has been found to be valid and reliable in diverse populations (DNA Genotek, 2013, 2019). The instructions were listed as 13 questions in total. Nine questions asked about willingness to perform each step of the testing process. Respondents answered “yes” or “no” to each of these questions indicating their willingness to perform that respective step. Two questions concerned study participation procedures after the sample was collected. One of the final two questions asked about behavioral intention by asking, “Will you be willing to participate in a study that involves collecting your saliva for genetic analysis?” The last question asked about fears about genetic testing in general. This sampling questionnaire was administered after the salient beliefs questionnaire so as not to influence the responses to the beliefs’ questionnaire. The order of questionnaire distribution for this study is provided in Appendix C.

The Centers for Epidemiologic Studies Depression (CES-D) Scale

The 20-item Centers for Epidemiological Studies Depression (CES-D) Scale was used to assess levels of depressive symptoms (Radloff, 1977). This self-report instrument designed to assess levels of depressive symptoms in the general population of US adults. Respondents indicate the frequency and duration of times which they have experienced certain situations or feelings on a 4-point likert-type scale. A total score is obtained. Higher scores indicating more depressive symptomatology. Evidence of content (Radloff, 1977) and construct validity and acceptable reliability has been established in disadvantaged mothers of all racial ethnic backgrounds (Atkins, 2010, 2015, 2017; Peden et al., 2004). An arbitrary score of ≥16 is identified evaluation as clinically to rule out significant, clinical warranting referral for psychiatric depression. The Cronbach’s alpha reliability coefficient for this sample was 0.88.

Data analysis

SPSS 25 software was used to generate descriptive statistics to summarize and describe the demographic data. This data was generated using IBM’s SPSS statistical computer program. Questionnaire responses for the salient beliefs questionnaire were analyzed qualitatively using directed content analysis of participants responses (Creswell, 2013; Hsieh & Shannon, 2005; Patton, 2015). First, the mothers’ responses were entered into a 10 × 44listed dimension at the top table (i.e., that normative, had the categories behavioral of the TPB’s main constructs and control beliefs) (Ajzen, 1991, 2014, 2020). Responses were entered into the table according to how the mothers responded to the questionnaires that contained questions representing the main constructs. Next, as per the tenets of directed content analysis (Hsieh & Shannon, 2005), the authors engaged in primary coding of mothers’ responses resulting in the identification of 16 codes for behavioral beliefs, 20 codes for normative beliefs and 11 codes for control beliefs by all of the authors. During secondary coding these initial codes were collapsed into categories resulting in 10 categories for behavioral beliefs, seven for normative beliefs, and nine categories for control beliefs. The most salient behavioral, normative and control beliefs were identified and quantified using frequency counts and percentages. A frequency count was also completed to determine the percentage of mothers willing to participate in genetic testing.

Trustworthiness of the data

Although the TPB was used to guide this analysis, this theory did not constrain study findings. Codes and categories that were not related to the theory are also presented. These statements included, (i.e., no disadvantages, not sure, “none”, “I would not know”, “I don’t really know”, “I don’t know”). To ensure reliability and trustworthiness, and to increase the credibility of the findings, analysis/investigator triangulation was used (Patton, 2015; Wisdom & Cresswell, 2013). Data analysis was completed by nine doctorally prepared nursing professors. All have experience conducting research with and providing care to women from racial/ethnic minority groups who reside in under resourced communities. The codes and categories were also reviewed by a senior researcher who is an expert in qualitative analysis and made recommendations for final themes.

Findings

A total of 41 mothers between the ages of 21 to 44 (M = 30.9, SD = 6.6) completed study questionnaires. Mothers self-identified as Black/African American (19/41, 46.3 %), Hispanic/Latino (16/41, 39.0 %), White/Caucasian (4/41, 9.8 %), and Asian/Indian (2/41, 4.9 %). Most indicated that they were single and have never been married (27/41; 65.9 %) while the rest were married (9/41; 22.0 %), separated (2/41; 4.9 %) or divorced (3/41; 7.3 %). Most reported being head of their household (33/41; 80.5 %). The majority of mothers (80.5 %; 33/41) were of low-income. Exactly 27 mothers with a family size of at least two earned less than $30,000 a year. Two mothers with a family size of at least three earned less than $40,000 a year, three mothers with a family size of at least four earned less than $50,000 a year, and one mother with a family size of at least five earned less than $60,000 a year making the majority of these families, low-income status (Department of Health and Human Services, 2020; Obamacare.net, 2020). Most were also employed full-time (24/41; 58.5 %) and had a high school education only (26/41; 63.4 %). Most mothers reported having one to two children (31/41; 75.6 %). Exactly 39 % (16/41) of mothers scored >16 on the CES-D scale indicating clinically significant levels of depressive symptoms. See Table 1 below for additional demographic information.

Table 1.

Frequency distribution of selected demographic variables (N = 41).

Characteristic	n	Percentage
Ages	36	87.80 %
Mean	30.89
Stand dev	6.56
Range	21–44
20–29	17	47.22 %
30–39	14	38.89 %
40–45	5	13.89 %
Race	41	100 %
Black/African American	19	46.34 %
Hispanic	16	39.02 %
White/Caucasian	4	9.76 %
Asian/Indian	2	4.88 %
Marital status	41	100 %
Single/never married	27	65.85 %
Married	9	21.95 %
Divorced	3	7.32 %
Separated	2	4.88 %
Head of household	41	100 %
Yes	33	80.49 %
No	8	19.51 %
Number of children	41	100.00 %
2 or fewer	31	75.61 %
3–4 children	8	19.51 %
5–6 children	2	4.87 %
Education completed	41	100.00 %
High school	26	63.41 %
Technical school	6	14.63 %
Two-year college	4	9.76 %
Four-year college	2	4.88 %
Master’s program	1	2.44 %
Doctoral program	2	4.88 %
Employment	41	100.00 %
Full-time	24	58.54 %
Part-time	3	7.32 %
Unemployed	14	34.15 %
Income	40	97.56 %
Less than $5000	10	25.00 %
Between $5000 and $ 20,000	10	25.00 %
Between $20,000 and $30,000	7	17.50 %
Between $30,000 and $40,000	3	7.50 %
Between $40,000 and $50,000	3	7.50 %
Between $50,000 and $60,000	3	7.50 %
Greater than $70,000	4	10.00 %
Birthplace	40	97.56 %
Born in the US	34	85.0 %
Born outside of US	6	15.00 %

Salient behavioral beliefs

Advantages

The most salient advantage reported was the belief that testing would help find a cure or treatment for depression (12/41, 29.3 %) and would help other people in general (11/41, 26.8 %). Mothers’ individual statements included, “I can help other people,” “we could get a cure based on people’s DNA,” and “It would be good for treatment one day.” Other advantages reported included the belief that depression and types of depression would be detected, diagnosed or ruled in or out in them or in others (11/41, 26.8 %). One mother stated, “Well I can find out if I have any signs of being depressed” and “Identify different types of depression.” Mentioned less often were beliefs that participating would advance and contribute to science in general (4/41, 9.8 %) as one mother stated, “there can be more study on it” and “I think it’s interesting and scientific analysis of a current illness.” Other mothers reported that participating would help find causes for depression (2/41, 4.9 %), prevent depression (1/16, 9.8 %), or empower women to be proactive about addressing their own depressive illness (1/16, 6.3 %). Four women reported that there were no advantages (9.8 %) and five women reported being unsure of the advantages (12.2 %).

Disadvantages

The most salient disadvantage reported was the belief that there were no disadvantages to participating (16/41, 39.0 %). These statements included, “I don’t see any disadvantages,” and “none.” Others reported the disadvantages related to uncertainty about how to handle the outcomes of the testing results namely, inability to then prevent, diagnose, find a treatment, or get help (9/41, 22.0 %). Some statements included, “some people may not get the help they need,” “not knowing how to prevent it.” Additionally, some mothers (5/41, 12.2 %) indicated a lack of trust or confidence in how the samples will be used stating, “Mishandling of the specimens.” Six mothers (14.6 %) reported that they were unsure or did not know of any disadvantages. Additional belief categories can be found in Table 2 below.

Table 2.

Salient behavioral beliefs (N = 41).

Salient behavioral beliefs	N	Quotations
Advantages
Treatment/cure for depression	12	“Improvement in methods of treatment” “We could get a cure based on people’s DNA”
Helping others	11	“I can help researchers find ways to help mothers” “It could help people in the future”
Diagnosis or detection of depression	11	“Finding out if I’m depressed” “Percentage of people depressed”
More research, study, scientific discovery	4	“Chromosomal study for genetic disorder like downs”
Causes of depression	2	“To see if it genetic” “looking for possible associations”
No advantages	4	“None” “n/a”
Not sure of advantages	5	“I would not know” “I don’t really know”
Disadvantages
No disadvantages	16	“Nothing” “I don’t know I think there is no disadvantage if you provide the sample willingly with no repercussions”
Uncertainty about handling/results/ outcomes	9	“Knowing what is probably going to happen but not knowing how to prevent it” “how to handle it.”
Trust/confidentiality	5	“I would hope they wouldn’t use it for anything else.” “I don’t want my DNA out there”
Not sure of disadvantages	6	“I don’t know”

Most salient normative beliefs

Referents who approve

The most salient referents reported by mothers included family members (19/41,46.3 %) and significant others (8/41, 19.5 %; boyfriends, spouses), would approve of their providing saliva samples for DNA testing. Other mothers reported that their friends (7/41, 17.1 %), agencies/organizations (6/41, 14.6 %; law enforcement, government, prisoners, teachers, childcare providers), work associates (4/41, 9.8 %; bosses and coworkers), doctor (4/41, 9.8 %) and church associates (2/41, 4.9 %; churches) would approve. Three women said “no one” would approve.

Referents who disapprove

The most salient statement provided when asked who would disapprove of them providing samples for DNA testing was “no one” (16/41, 39.02 %) followed by church associates (8/41, 19.51 %; church group, church). Other mothers reported that their family members (6/41, 14.63 %; mother, sister, brother, parents), and agencies (1/16, 6.25 %) would disapprove.

Referents who would participate

The most salient referents reported by mothers when asked who would participate were family members (18/41, 43.9 %; family, cousins aunts, uncles, mother, sisters, brother, children) and friends (11/41, 26.83 %) would participate. Other mothers indicated that their significant other (2/41, 4.88 %), or work associate (2/41, 4.88 %), or doctor (2/41, 4.88 %) would participate. Nine mothers (21.95 %) indicated that no one would participate and four mothers (9.76 %) indicated that they did not know who would participate.

Referents who would not participate

The most salient statement provided when asked who would not participate by providing samples for DNA testing was “no one” (13/41, 31.70 %). Other mothers indicated that family members (8/41, 19.51 %; family, parents, siblings, husband, cousins, aunts, uncles, dad father), significant other (5/41, 12.2 %), friends (4/41, 9.76 %), church associates (3/41, 7.31 %), work associates (2/41, 4.88 %), agencies (1/41, 2.44 %) would refuse to participate. One mother (6.25 %) indicated that everyone would refuse to participate.

Most salient control beliefs

Barriers and facilitators

Mothers (14/41, 34.1 %) indicated the availability of information or lack of knowledge about the study purpose and how to perform the procedures as the most salient facilitators or barriers to testing. Mothers’ individual statements included, “Understanding the research and purpose for the saliva,” and “Not knowing how to get the sample.” Some mothers (11/41, 26.8 %) indicated barriers about unpleasant/difficult study procedures as some stated, “spitting into cup” and “Most people would think that its nasty.” Mothers also indicated that the location (10/41, 24.4 %) and timing (5/41, 12.20 %), of testing and availability of monetary “compensation” (4/41, 9.8 %) can be a barrier or facilitator. Statements referencing these included, “if they came to me to do it” or “inconvenient time and location.” Two mothers (4.9 %) indicated that religion was a barrier. Only one mother (2.44 %) indicated that childcare (2.44 %; “having a sitter”), and another mother lack of outreach to her (2.44 %; “not asking”) were barriers or facilitators. Fourteen mothers (34.15 %) indicated that there were no barriers, while eleven others (26.83 %) indicated that there were no facilitators of participation. Three mothers (7.31 %) indicated that they were unsure of the barriers and facilitators. Additional control belief categories can be found in Table 3 below.

Table 3.

Salient control beliefs (N = 41).

Salient control beliefs	N	Quotations
Information/explanations of study purpose and procedures	14	“People are uninformed” “A lot more questions about what will be proven” “Not sure what saliva DNA has to do with it” “Drug test?”
No barriers or facilitators	14	“None” “n/a”
Procedures: unpleasant/difficulty/ease	10	“Saliva samples are easy to obtain” “Dry mouth” “Unsanitary conditions”
Location	10	“Location of the place” “Difficult location” In a “doctor office”
Time/scheduling	5	“Convenient time” “Maybe I wouldn’t have the time to do it”
Compensation/financial	4	“Compensation” “Will participate for cash”
Religion	2	“Religious beliefs”
Unsure	3	“I don’t know”

Willingness to participate in genetic (DNA) salivary sampling

Most of the mothers (37/41, 90.24 %) who responded to the Genetic Sampling Acceptability Questionnaire stated that they would provide a saliva sample for genetic (DNA) testing if ever asked. Only four mothers (2 Black/African American, 1 White/Caucasian, and 1 Hispanic/Latino) indicated that they would not. Out of the 11 steps of the procedures, 90.24 % (37/41) of mothers agreed to performance all of the steps. Three mothers documented a fear of testing on the sampling acceptability questionnaire that included as stated, “not being aware of all tests that it is used for,” or “don’t want my DNA out there.” Four mothers indicated that they would participate for “cash” or “pay.” One mother would participate if she would be able to, “see what the results are.”

Discussion

This study elicited the salient normative, behavioral and control beliefs that impact participation in genetic salivary testing in this sample of multi-ethnic mothers who are at-risk for depressive illness. Willingness to provide salivary samples and levels of depressive symptoms were determined. Our study is unique. Current studies mainly focus on beliefs towards participation in genetic testing for non-psychiatric conditions and biomedical research in general in aggregate samples of adults. In these studies, participants frequently discussed lack of trust in medical establishments and researchers as barriers for lack of participation in genetic research by underserved populations in general (Armstrong et al., 2012; Long et al., 2011; Saulsberry & Terry, 2013). As evident by the findings in this study however, other psychosocial determinants may have an important impact on their willingness to participate in genetic research for depression compared to trust in this group of low-income or racial/ethnic minority mothers (Artiga & Hinton, 2018; Healthy People 2020, 2020; Healthy People 2030, 2020). This is the first study to directly elicit beliefs towards genetic psychiatric testing for depression from a sub-group of low-income and or racial/ethnic minority mothers who are at high risk for depressive illness and therefore fills an essential gap in the literature.

Salient beliefs

Overall, attitudes towards psychiatric genetic testing were positive with mothers reporting more advantages compared to disadvantages. The salient belief that testing would lead to a cure, diagnosis, or treatment of depression or help others were similarly reported by Latino adults towards ovarian and breast cancer screening (Ceballos et al., 2014; Kinney et al., 2010; Singer et al., 2004) and Black adults towards psychiatric genetic testing (Murphy & Thompson, 2009). These mothers believe that future altruistic and/or personal benefits may be received by participation in genetic salivary sampling.

A salient disadvantage was lack of certainty with how to understand, interpret and/or respond to the results and outcomes of testing. In prior research, uncertainty, fear, anxiety and fatalistic attitudes were similarly expressed by Hispanic/Latino women about outcomes of genetic testing results for breast cancer and ovarian cancer (Kinney et al., 2010; Vadaparampil et al., 2010) and Asian/Indian women for genetic testing results for cancer (Leader et al., 2018). In the current sample, fatalistic attitudes towards genetic testing were not expressed. These attitudes were also not expressed in a sample of Blacks and Whites towards psychiatric genetic research (Murphy & Thompson, 2009). Cancer is a known leading cause of death in US Americans and therefore may be perceived as more fatal by the general public than depression and other psychiatric diagnoses (Xu et al., 2020). The uncertainty reported in the current study may reflect the lack of knowledge about depression, its detection, prevention and treatment overall as reported by mothers who reported not knowing the purpose or disadvantages associated with salivary genetic testing for depression. These findings are consistent with prior research since lack of knowledge about genetics was reported as a barrier in Black adults for psychiatric genetic research (Murphy & Thompson, 2009) and Hispanics for genetic breast and ovarian cancer screening (Kinney et al., 2010; Vadaparampil et al., 2010). Black/African Americans also expressed a desire to receive follow-up with the results of psychiatric genetic testing (Murphy & Thompson, 2009). Uncertainty and lack of knowledge are disadvantages to participation in genetic salivary sampling according to the mothers in this study.

Surprisingly, in this study few mothers documented fears related to trust issues, namely regarding how genetic information will be handled, kept private and confidential. Trust issues are widely reported as barriers to genetic testing in ethnic/minority and low-income populations towards genetic testing in general (Saulsberry & Terry, 2013) and were reported by Black Americans towards psychiatric genetic research and Asian/Indians towards genetic cancer genetic testing (Leader et al., 2018). There is a stigma associated with mental illness in ethnic/minority and low-income communities so confidentiality is generally very important (National Alliance on Mental Illness, 2021). The primary staff interacting with the mothers during data collection and the administrators and directors who endorsed their participation were of similar backgrounds as the study participants (i.e., White/Caucasian, Black/African American) and this may have contributed to the minimal sentiments associated with distrust. Nevertheless, given the history of abuse of human subjects while participating in research in the US and abroad (Breault, 2006; Centers for Disease Control and Prevention, 2021; Scharff et al., 2010), issues of trust may continue to surface and be perceived as a disadvantage of participation in genetic psychiatric research in this defined subgroup of mothers.

Diagnostic benefits were also perceived as a benefit to participation. Prior research shows that sociocultural factors contribute to lack of self-recognition of depression in certain ethnic/minority groups who also encounter barriers to receiving mental health evaluations for treatment (Atkins, 2015, 2016; Villatoro et al., 2014). In addition, the finding that helping others is perceived benefit, is consistent with research that shows that certain ethnic/cultural groups stress family and community interests over individual interests (Campesino & Schwartz, 2006). In prior research in adults, willingness to participate in psychiatric research was related to perceived benefits to society (Murphy & Thompson, 2009). Lack of knowledge of the advantages and trust were also mentioned. The stigma of mental illness may discourage educational discussions about mental illness within certain ethnic/minority or low-income communities and may contribute to uncertainty and thus perceived as a disadvantage of testing (DeFreitas et al., 2018; Interian et al., 2010;Leader et al., 2018; Murphy & Thompson, 2009; Vadaparampil et al., 2010).

Salient referents were family members and friends who would approve of testing rather than disapprove. This finding is not surprising since commitment to immediate and extended family (i.e., including friends) and family caretaking obligations often take precedence over the needs of the individual for Hispanic/Latinos (Campesino & Schwartz, 2006), Black/African American mothers (Atkins, 2010, 2015, 2017; Black et al., 2009) and Asian/Indian mothers (Masood et al., 2009). In a prior research, Blacks, Whites, and Asian/Indians expressed concerns about the views of family members, benefits to society (Murphy & Thompson, 2009), and effects of testing on their children (Leader et al., 2018; Murphy & Thompson, 2009; Vadaparampil et al., 2010). These mothers’ willingness to participate in psychiatric genetic research for depression may be impacted by the needs and views of others, particularly family and friends.

Church associates were mentioned by mothers (10/41) as those who would more likely disapprove of genetic testing. One mother mentioned “religious beliefs” as a barrier to testing. Prior research has shown that faith and particularly the Christian religion has a prominent role in the lives of Hispanic/Latino (Campesino & Schwartz, 2006), Black adults (Campbell et al., 2007;Campbell & Mowbray, 2016; Hunn & Craig, 2009; Ward et al., 2013), and Indian/Asian Americans (Islam & Patel, 2018). Latino adults in a prior study recommended the use of clergy to encourage participation in genetic breast and ovarian cancer genetic screening (Kinney et al., 2010). However, the role of church associates were not mentioned by Black or White adults towards genetic psychiatric research (Murphy & Thompson, 2009). Clearly more mothers in this sample felt that church associates would not support their participation in psychiatric genetic research. Significant others were not named as referents as often by mothers, more likely because most mothers were single/never married and more likely to make independent healthcare decisions. Mothers named agencies and organizations 3rd most often as those who approve rather than disapprove. Social and financial support for managing mental health issues is often sought from friends and agencies who often assist low-income and ethnic minority mothers to obtain resources (Atkins, 2016; Gordon & Batlan, 2011). Their views would therefore naturally impact testing as their approval or disapproval may be tied to the receipt of resources for these families. As indicated, religion and views of religious associates may be a discouraging factor, and the views of those in charge of community agencies/organization an encouragement for participation in genetic research for this defined sub-group of mothers.

This is the first study to elicit normative referents who impact participation in genetic psychiatric research for depression in low-income and/or ethnic minority mothers (Leader et al., 2018; Murphy & Thompson, 2009; Vadaparampil et al., 2010). This study, therefore provides new knowledge of referents more likely to be influential that can be used when designing intervention strategies to support participation by this sub-group of mothers.

Mothers reported more facilitators than barriers to genetic testing for depression and many reported no perceived barriers. The salient barriers mentioned included lack of information and explanations about the purpose, expected outcomes and procedures for collecting the genetic samples as the most salient barriers to testing. Three mothers indicated that they lacked knowledge of barriers and facilitators of testing. Lack of knowledge about genetics and awareness of risk were similarly reported as barriers for Black Americans for psychiatric genetic research (Murphy & Thompson, 2009), for Hispanic women for breast cancer screening (Vadaparampil et al., 2010), and for cancer risk among Asian Indians (Leader et al., 2018).

Although mothers were given instructions about the study’s procedures for collecting samples, these instructions were provided after they completed the beliefs questionnaire. Mothers, therefore, expressed concerns that the procedural steps for salivary collection would potentially be unpleasant or difficult to perform. Research shows that low-income and certain ethnic/minority groups may prefer certain methods of testing over others (Borders et al., 2007; Scarinci et al., 2013). Concerns over harmful study procedures were also expressed by Black adults towards psychiatric genetic testing (Murphy & Thompson, 2009). Inadequate knowledge about the study’s purpose and procedures for testing and/or specific aspects of testing are perceived as barriers to participation in this group of mothers.

Issues of convenience including location, timing, outreach in the community, and childcare needs were reported by many mothers. Making studies convenient by instituting outreach efforts in community locations (i.e., in the neighborhood, schools, churches, clinics), was reported as a facilitator in Black adults for psychiatric genetic research and Hispanic/Latina adults for breast and ovarian cancer research (Kinney et al., 2010; Murphy & Thompson, 2009). Four mothers indicated that monetary compensation would facilitate testing. In a prior study of Black American adults, benefits such as monetary compensation, treatment, food/beverages, education and follow-up were reported as incentives that may increase participation (Murphy & Thompson, 2009). These results are not surprising since many mothers in the present sample were of low-income, reported being single never married, heads of their households, and thus primary caretakers of their families. These mothers may therefore lack transportation and have limited financial and social resources to travel to clinical study sites outside of their communities. Strategies to address these barriers may increase participation in genetic psychiatric research for this defined subgroup of mothers.

Willingness

Overall, mothers expressed a high willingness to participate. These results are consistent with prior qualitative studies where high willingness to participate in research was expressed by Latino men and women for genetic testing (N = 428) (Singer et al., 2004), for biomedical research in general (N = 35) (Ceballos et al., 2014), and for genetic screening for cancer(Katz et al., 2008). An entire sample of Black American adults (n = 18) expressed a willingness to participate in psychiatric genetic research (Murphy & Thompson, 2009). There was also a high willingness among low-income White adults in a multi-ethnic sample (Sanderson et al., 2013). In prior research, Asian American Indians expressed hesitancy to participate in genetic cancer research and more foreign-born Asian Indian women (20 %) did not want to know about cancer compared to the US born Asian Indian women (14 %) (Leader et al., 2018). In another study, Asian Americans were less willing to participate in health-related research due to issues with trust and language barriers compared to other ethnicities (Liu et al., 2019). Contrary to these findings, the two Asian Indian mothers in the present study who were born in India, expressed no fears or refusal to participate. Psychiatric illness may not be perceived as immediately deadly as cancer and therefore ethnic/minority groups may have less hesitancy and fear about participation. Overall, the majority of the low-income or ethnic minority mothers in the present sample expressed similar willingness to participate in genetic research as aggregate samples of ethnic/minorities and low-income populations. These results can now apply to willingness to participate in genetic research for depression in this sample of low-income and racial/ethnic minority mothers at risk.

Depression levels

The proportion of mothers reporting high levels of depressive symptoms in this multi-ethnic sample is 39 %. This percentage is consistent with prior research studies that measured levels of depressive symptoms among ethnic/minority Black/African American (50 %) (Atkins, 2015, 2017) and (63 %) (Hatcher et al., 2008), Hispanic/Latinos (24 %) (De Luca et al., 2018), (19 %) (Brooks et al., 2015), (23 %) (Chaudron et al., 2005), White/Caucasians (25 %) (Conners-Burrow et al., 2016), multi-ethnic, low-income mothers of young children (75 %) (Peden et al., 2004), US, first generation, south east Asian Indian women (48.0 %) (Rehman, 2007), and Asian Indian immigrant postpartum mothers (28 %) (Goyal et al., 2006). Mild levels of depressive symptoms may precede the development of clinically significant major depressive disorder (Ji, 2012). Hence, the findings from this current multi-ethnic sample substantiates the disproportionate risk of clinical depression in this defined sub-group of mothers.

Implications

To increase participation in psychiatric genetic research, a community based participatory Research approach (CBPR) can be used (McIntyre, 2008; Minkler & Wallerstein, 2008). In this analysis, the behavioral normative and control beliefs of mothers were successfully elicited by utilizing this approach (McIntyre, 2008; Minkler & Wallerstein, 2008). This approach encourages collaborative discussion with community members that can lead to jointly developed strategies to address the needs of these communities. Use of CBPR approaches are viewed as an ideal standard when working with racial/ethnic minority and low-income populations (Fisher et al., 2020). Research shows that when partnering with community-based organizations, an overall sense of shared positions of power can increase participant trust in the purpose and conduct of the research study. Partnered relationships enhance community members’ willingness to take actions to engage in activities that improve health (Fisher et al., 2020; Minkler & Wallerstein, 2008; Salimi et al., 2012). These discussions can increase the effectiveness of strategies for inclusion of vulnerable disadvantaged groups similar to the present sample of low-income or racial/ethnic-minority mothers.

These mothers may be motivated to participate by emphasizing future benefits. These mothers can be made aware of these benefits during educational sessions that can be held in the community for families to attend and/or education can be given during the informed consent process. Future benefits of testing such as finding cures/treatments, and helping families, communities, and society at large can be emphasized during these educational sessions. Detailed explanations about the study’s purpose, possible results, implications and general knowledge of the topic area can also be discussed during these educational sessions. Participants can also be instructed about follow-up and guided to locate places for psychiatric referral and evaluation if mental illness is detected while participating in studies that evaluate depressive symptoms. Future benefits that also include scientific discoveries and the possibility of gaining knowledge that leads to accuracy with future diagnosis of depression in oneself or others can also be emphasized. Misconceptions regarding immediate diagnostic benefits can also be clarified during these educational sessions and during the informed consent process.

The barriers reported by these mothers may be removed via community and family involvement and measures that would make participation convenient and require less use of the mothers’ resources. Research sessions can be held at convenient locations in the communities where mothers frequent such as private and public service entities as used in the present study or faith-based organizations. As done in the present study, the owners and directors who are familiar to the mothers can endorse mothers’ participation. Efforts can be made to ensure that researchers completing data collection can be familiar with the culture of potential participants or are of similar backgrounds. Prior studies show that lack of researcher knowledge about the cultural differences among ethnic minorities and those of low socioeconomic status can contribute to ineffective communication about research and therefore inhibit willingness to participate during the recruitment, enrollment, and retention stages of the study (George et al., 2014). Mothers may perceive such investigators of the same ethnicity as part of their community. To increase trust, strategies that reassure clients of the efforts that will be taken to keep results private and confidential can be used to promote trust. These may include pre-participation discussions about confidentiality and the measures to ensure privacy of information such as the provision of a private space for data collection and questionnaire completion. Subject name identifiers can be used instead of requiring subjects place names or initials on questionnaire packets (US Department of Health and Human Services Office of Minority Health, 2012). These efforts were used in the present study and may have contributed to few comments about lack of trust.

For some ethnic/minority mothers, certain study procedures may be preferred over others. There are several methods that can be used to collect DNA from study participants including the use of saliva, hair, urine and blood (Cozier et al., 2004; Ghatak et al., 2013; Hue & Thi Thao Nguyen, 2013). Researchers can have collaborative discussions with communities and jointly select the testing procedures that are appropriate for the study’s purpose yet less aversive to potential participants. Descriptions of participation procedures can be provided verbally or in written form.

Recruitment took place at locations in urban communities, where most of the residents are of low-income, and the majority of the population identified with a racial/ethnic-minority group. However, to increase participation of mothers who self-identify as White/Caucasian and Asian/Indian, researchers must target and seek out representative communities where these mothers are more likely to be found. Asian/Indian women often report being of high income and having higher levels of education and may therefore be located in more affluent communities (Leader et al., 2018; Rehman, 2007; Roberts et al., 2012). Increased outreach efforts in all communities are needed to locate White/Caucasian mothers of low-income. White/Caucasian mothers of low-income can also be located in rural communities (Thiede et al., 2018). Those who provide funding aimed at increasing participation of low-income or ethnic minority mothers in genetic research can prioritize researchers who use Community Based Participatory Research (CBPR) approaches to promote effectiveness as a requirement for the receipt of grants for research support. Researchers can also further explore the relationship between religiosity and faith and engagement in genetic testing for mental health disorders in this defined sub-group of mothers.

Study limitations

Data collection took place in urban community locations where the mothers resided. The results, therefore, may not apply to mothers who reside in suburban or rural communities. A sample of convenience can be biased even in such a diverse sample due to self-selection into the study. The current sample had few Asian/Indian and White/Caucasian participants and therefore future studies should have an outreach component that targets communities that contain mothers with these self-identities.

Appendix A

Salient beliefs about DNA sampling

Please take a few minutes to tell us what you think about having your saliva’s genetic content (DNA) checked to examine ways to prevent and treat depressive symptoms. There are no right or wrong responses; we are merely interested in your personal opinions. In response to the questions below, please list the thoughts that come immediately to mind. Write each thought on a separate line.

1. What advantages do you see to providing a saliva for DNA analysis to help examine ways to prevent and treat depressive symptoms (what is good about participating) ___________________________________________________________________________________________________________________________________________________________________________ ____________________________________________________________________________________________________________________

2. What are the disadvantages you see about providing a saliva sample for DNA analysis to help examine ways to prevent and treat depressive symptoms? (what is bad about it participating)

3. ____________________________________________________________________________________________________________________________________________________________________________________ ____________________________________________________________________________________________________________

4. What else comes to mind when you think about giving your saliva sample for DNA analysis to help examine ways to prevent and treat depressive symptoms?

   ______________________________________________________________________________________________________________________________________________________________________________________

   __________________________________________________________________________________________________________

There might be individuals or groups who would think you should or should not provide a saliva sample for DNA analysis to help examine ways to prevent and treat depression Please list them.

1. Please list the titles of individuals or groups who would disapprove, discourage you or think you should not provide a saliva sample for DNA analysis to help examine ways to prevent and treat depressive symptoms. Please provide relationship to you such as (i.e. best friend, church group, mother, doctor), not the actual names of individuals or group.

   ____________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________________

2. Please list the titles of individuals or groups who would approve, encourage you or think you should provide a saliva sample for DNA analysis to help examine ways to prevent and treat depressive symptoms. Please provide relationship to you such as (i.e. best friend, church group, mother, doctor), not the actual names of individuals or group.

   _____________________________________________________________________________________________________________________________________________________________________________________ _______________________________________________________________________________________________

3. Sometime, when we are not sure what to do, we look to see what others are doing. Please list the titles of individuals or groups who, socialize with you, your children, or your family who are most likely also provide a saliva sample for DNA analysis to help examine ways to prevent and treat depressive symptoms. Please provide relationship to you such as (i.e. best friend, church group, mother, doctor), not the actual names of individuals or group. _________________________________

   ______________________________________________________________________________________________________________________________________________________________________________________ _________________________

4. Lease list the titles of individuals or groups who, socialize with you, your children, or your family who are least likely also provide a saliva sample for DNA analysis to help examine ways to prevent and treat depressive symptoms. Please provide relationship to you such as (i.e. best friend, church group, mother, doctor), not the actual names of individuals or group.

   _____________________________________________________________________________________________________________________________________________________________________________________

   _______________________________________________________________________________________________

Some things may make it hard or easy to provide a saliva sample for DNA analysis to help examine ways to prevent and treat depressive symptoms. Please tell us:

1. Please list any factors or circumstances that would make it easy or enable you to provide a saliva sample for DNA analysis to help examine ways to prevent and treat depressive symptoms __________________________________________________________________________________________________________________________________________

   1. Please list any factors or circumstances that would make it difficult or prevent for you to provide a saliva sample for DNA analysis to help examine ways to prevent and treat depressive symptoms ______________________________________________________________________________________________________________

Thank you for Your Responses

Appendix B

Saliva genetic (DNA) sample collection acceptability

• We would like to ask about your willingness to perform the steps below to provide a saliva sample for other studies conducted by this researcher. Your honest answers will help us plan for future studies that will continue to help us understand the role of DNA in preventing and treating depression. All of the information that you share will be kept confidential and will not be shared with anyone else besides the research study staff.

Please feel free to be honest and open with your answers.

How do you feel about performing each step below?

1. Before the sample is collected, would you be ok with doing the following: (Check the box under “Yes” or “No”)

   	Yes	No	If you said “No” describe why
   Not eating or drinking or smoking or chewing gum for 30 min before giving your saliva Sample
   Not removing a plastic film from a saliva collection container
   Washing your hands with water if liquid comes into contact with your eyes or skin

2. While you are giving the saliva sample, would you be ok with doing the following: (Check the box under “Yes” or “No”)

   	Yes	No	If you said “No” describe why
   Spitting into a funnel until the amount of liquid saliva (not the bubbles) reaches the fill line to about 2 ml. Holding the tube upright with one hand. Closing the funnel lid with the other hand by firmly pushing the lid until you hear a loud click. Making sure that the lid is closed tightly. Holding the tube upright then unscrewing the funnel from the tube Using the small cap that will be given to you to close the tube tightly. Shaking the caped tube for 5 s then throwing away the funnel

3. After the sample is collected, would you be ok with doing the following: (Check the box under “Yes” or “No”)

   	Yes	No	If you said “No” describe why
   Filling out a questionnaire to talk about how easy or hard giving the sample was.
   Receiving compensation in the form of money or gift cards after the sample is given to the person conducting the study

4. Would you be willing to provide a saliva sample?

   	Yes	No	If you said “No” or “Yes” describe why
   Will you be willing to participate in a study that involves collecting your saliva for genetic analysis?
   Do you have any fears about having your saliva collected for genetic analysis? If you do what are they?

Appendix C

Study protocol

Sequence	Questionnaires to complete	Time for completion
Form 1	Screening Form	2 min
Form 2	Consent Form	5 min
Form 3	Demographic Data Sheet	5 min
Form 4	CES-D Scale	5 min
Form 5	Beliefs About DNA Sampling Questionnaire	10 min
Form 6	Direct Measures of DNA Sampling Beliefs Questionnaire	5 min
Form 7	Acceptability of DNA Sampling Techniques Questionnaire	5 min
Form 8	Beliefs About Cortisol Sampling Questionnaire	10 min
Form 9	Direct Measures of Cortisol Sampling Beliefs Questionnaire	5 min
Form 10	Acceptability of Cortisol Sampling Techniques Questionnaire	5 min
Total		57 min