mothers' voices: culturally diverse mothers' experiences talking with ...

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Nursing, Florida International University Biscayne. Bay Campus 3000 N.E. 151st Street, ACII-252A,. North Miami, FL 33136. Cindy Silitsky, PhD, is an Assistant ...


Abstract: A qualitative analysis of culturally diverse mothers' experiences communicating with their children about HIV/AIDS following their participation in a nationally renowned prevention and education program illuminated some of the challenges and surprises these women encountered. Excerpts of "Mothers' Voices" illustrate the themes that emerged through data analysis. Implications and applications to other contexts are provided.



n recenf years, fhe high incidence of sexual acfivify and HIV contracfion by American youfh has reached overwhelming proporfions. The likelihood fhaf a feenager will engage in sexual infercourse increases fnroughouf fne feen y^ears (Dailard, 2001). The Office of Nafional AIDS Policy (2000) reporfed fhaf 65% of feens are sexually active by the 12th grade, with 20% having had four or more partners. The number of teenagers diagnosed with HIV and AIDS continues to grow at alarming rates; 50% of all new HIV infections presently occur in youth ages 13 to 24, which translates to more than 20,000 teens and youqg adults per year (Centers for Disease Control [CDCl, 2002). While the need for prevention and education programs for children and adolescents continues to grow, many restrictions are placed on schoolbased education programs. The Alan Guttmacher Sande Gracia Jones, PhD, ARNP, ACRN, CS, C, BC, FAAN, is an Assistant Professor School of Nursing, Florida International University Biscayne Bay Campus 3000 N.E. 151st Street, ACII-252A, North Miami, FL 33136. Cindy Silitsky, PhD, is an Assistant Professor, Social Sciences and Counseling Department, St. Thomas University. Correspondence concerning this article should be addressed to Dr Sande Gracia Jones via her office address or email: [email protected]

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Institute reported that 25% of sex education teachers are not permitted to discuss contraception, including the use of condoms, as they teach from an absfinence-only perspective (Dailard, 2001). Other programs have more latitude regarding the issues that can be covered and attempt to incorporate the family unif and communicafion skills into curricula. However, the ongoing debate about whether sex education should be provided in the school or the home continues, while teenagers continue to engage in sexual activity and contract HIV. In the last 10 years, prevention programs have started to target parents to teach them how to educate and communicate with their children about sexual issues (Lederman & Mian, 2003). However, there is little outcome research on the effecfiveness of HIV prevention programs that specifically train parents to be HIV educators for their children and adolescenfs. It is imperative to determine which specific components of family-centered HIV prevenfion programs are successful. HIV is an area of sfudy that is constantly changing with the advent of fechnology, research, and new information. Program evaluation studies cost time, resources, and commitment from clinical agencies and organizations. Unfortunately, many prevention and education programs lack the luxury of funding for such evaluation efforts. More and more programs are concluding that well designed and executed evaluation studies are an investment in a

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program's future (Coyle, Boruch, & Turner, 1991). Findings can lead to changes in program curricula and implementation as well as help improve services to the community by identifying factors that may be facilitating or preventing desired outcomes (Mertens & Carael, 1997). Once preliminary evaluation studies have been completed, future evaluations will be less expensive to conduct, future funding for the program may be obtained, and morale can increase when program staff view how their daily efforts impact others' lives (Coyle et al., 1991; Grembowski, 2001). In studies of parental communication with children about HIV/AIDS, there has been a dearth of information from a multicultural perspective (Finger, 1997; Sigelman, Mukai, Woods, & Alfeld, 1995). Exploration of the perceptions of mothers from various cultural and ethnic groups about their communication with their children about HIV would add to knowledge in this area. The purpose of this paper is to present qualitative findings from a program evaluation of Mothers' Voices South Florida (MVSF). BACKGROUND OF THE ORGANIZATION

Mothers' Voices, a national grassroots organization, was founded in 1991 in New York City by a group of five mothers who had concerns about the rise of HIV infection among the nation's youth (Mothers' Voices, 2003). Since the inception of Mother's Voices, chapters were established in major cities across the country. In 2003, MVSF became the national headquarters for the organization. Since values and belief systems about sexuality originate within the family environment, the organization takes the position that parents need to help their children protect themselves against infection. If parents learn how to communicate with their children about drug use, sexuality, and HIV transmission, then the risk of new infections may be mitigated. Mothers are specifically targeted as the best hope for communicating age-appropriate information to their children about prevention and sexuality since they have a primary relationship with their children (Mothers' Voices, 2000a, 2000b). Parent education is provided through a one-anda-half hour workshop, "Raising Healthy Kids" (RHK). The program curriculum includes psychoeducational information about children's developmental stages, anatomy, safer sex practices, and HIV transmission. Program staff provide guidelines for effective parent-child communication including age-appropriate information, factors that support or impede the communication process, and how to take advantage of "teachable" moments in their children's lives. Emphasis is placed on each family's unique values, and mothers are encouraged to consider how they were raised and educated about sexuality within their cultural contexts (Mothers' Voices, 1998).

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Community groups such as local church groups, civic organizations, mothers' breakfasts, and Parent Teacher Associations (PTAs) provide forums in which groups of mothers meet regularly to discuss common interests and issues. RHK workshops are scheduled either by request from an organization or group or MVSF outreach to community programs. Until recently. Mothers' Voice workshops were implemented on a national basis without formal, systematic evaluation plans in place. METHOD Design This multimethod study was designed to assess the extent to which MVSF achieved its program goals and objectives, specifically educating parents about sexual health and HIV prevention. In addition, this study sought to obtain data that could be used to determine the need for future program development and revisions (Merfens & Carael, 1997; O'Connell, Bol, & Langley, 1997). Quantitative findings have been presented elsewhere (Jones, Silitsky, Caynor, & Graham, 2004). Qualitative questions "allow respondents to describe their feelings, beliefs, attitudes, and behaviors without being confined or led by a structured question with limited response choices" (Mantell, Di Vitf is, & Auerbach, 1997, p. 141). These questions are useful in gaining insight info participant's personal experiences, perceptions, and opinions. These types of questions enhance overall program evaluation because they allow for more inaeptri and comprehensive responses than can be gathered through quantitative measures (Denzin & Lincoln, 1994). Three survey questions were designed in colloquial language to elicit respondents' feedback about the MVSF workshops: 1. What parts of the program have helped you the most in communicating with your chiWren? 2. Have issues come up with your children that were not discussed in the workshop that you wished you had received education about? 3. What has surprised you the most about giving your children the information about HIV/AIDS and sexuality you learned at the workshop? Procedure

After exempt status for program evaluation and survey researcn was obtained from a university Institutional Review Board for the Protection of Human Subjects (IRB), data were gathered through mailed surveys. Evaluation surveys were mailed to the 386 mothers who had attended the MVSF workshops over a 2-year period (i.e., 2000-2001). Thirty seven questionnaires were returned by the postal service due to incorrect addresses or address changes. Surveys were received from respondents over a three

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and a half month time period. Follow-up reminders were sent out during tne last month of data collection. A total of 121 questionnaires were returned for a response rate of 31.3%, which was quite favorable for mail surveys (Fowler, 2001). Respondents were given grocery store certificates worth $5.00 in appreciation of their participation. In order to protect their identities, respondents were asked not to write their names on the surveys. Identifying information was recorded on a detachable page so that respondents were able to receive credit for participating in the survey and receive their certificates, but tneir responses could not be linked to them specifically. An Hispanic volunteer translated responses that were returned in Spanish in order to ensure the least amount of misunderstanding in the translation. Sample All of the respondents were female since the proram workshop was designed for mothers. Responents were asked to identify their ethnic/racial background (see Table 1); however, 11 (9.1%) respondents chose to not answer this question. Consistent with the demographics of South Florida, over half of the sample was comprised of women of ethnic minorities. The remaining two fifths of the sample consisted of White women; of this group, over a third (n = 16, 34%) further specified that they were White and Jewish.


Table 1. Ethnic/Racial Background of Sample (N = 121) Ethnic/Racial Background Black Hispanic White Not Reported

n 34 29 47 11


28.0 24.0 38.9 9.1

Respondents were asked to identify how many children they had and how old their children were. However, consistent with the reality of many ethnic families, these two variables were extremely confounded since many program participant "mothers" were actually grandmothers or aunts who were caregivers for children and adolescents; these women reported the numbers and ages of their biological children rather than the ages of the children targeted by the MVSF program. Four (3.3%) respondents did not answer this question. The average number of children per respondent was 2.29, with a modal number of children of 2 (range 0 to 7). The average age of children was 15.6 years (range = in utero [mother pregnant] to 18 years). Journal of Cultural Diversity • Vol. 11, No. 2

When analyzed separately by race, Hispanic respondents had the highest number of children per family with a mean of 2.5 children, followed by Black respondents with a mean of 2.3 children, and^ White respondents with a mean of 1.7 children. None of the White respondents had more than three children per family, whereas all 14 (11.6%) of the respondents who had between 4 and 7 children were Black or Hispanic. In terms of age, children of Black respondents averaged 18.8 years, over 3 years older than the sample average. Hispanic and White respondents had children with the lowest average ages of 14.3 and 14.4, respectively. Respondents were asked to report the length of time that had elapsed since they attended the workshop. Almost half (n = 57,47.2%) of the respondents attended the workshop within the past 6 months (see Table 2). Table 2. Time Between Workshop Attendance and Evaluation Survey Completion (N = 121) Time Interval < 1 month 1 month to 3 months 3 month to 6 months 6 months to 1 year 1 year to 2 years Not Reported

n 7 29 21 31 16 17

% 5.8

24.0 17.4 25.6 13.2 14.0

FINDINGS Each open-ended question yielded several thematic categories. Following each category description, excerpts from respondents will be presented that illustrate tne category theme. Benefits of the Program In response to the question, "What parts of the program have helped you the most in communicating with your children?", respondents' responses were overwhelming positive. For example, a Hispanic mother exclaimed, "All the parts were helpful! , and one African American mother wrote, "Everything I learned in the workshop helped me to feel more comfortable talking to my children." Only 11 responses were negative; for example, a Hispanic mother commented, "The program I attended was just a couple of hours long and didn't really cover all the topics I feel I need to cover." Specific responses regarding benefits of the program could be categorized under five major themes: (a) learning communication tips and tecriniq^ues, (b) enhancing parents' HIV knowledge, (c) tailoring communication to child's age, (d) dispelling taboos and developing confidence, and (f) valuing specific workshop components.

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Learning communication tips and techniques.

Over a fourth of the sample (n = 31, 25.6%) indicated that they valued discovering and practicing new communication skills which varied from very specific techniques to broader strategies. For instance, a White, Jewish mother wrote, "They helped us learn the right wordage." A White, non-Hispanic mother wrote about the importance of openness and honesty: "I found it helpful to know that children need honest facts—no sugar coating of details." An African American mother cleverly noted, "I liked learning about teachable moments and about being an askable parent." One White, non-Hispanic mother wrote, 'They taught us that it's important not to lecture— but rather to just talk." Another White, Jewish mother elaborated: "The most important aspect of the workshop is to teach parents and kids to always keep lines of communication open—on all topics—especially when you disagree or get angry." Several respondents addressed their realization of the importance of having regular, ongoing discussions with their children regarding sexuality and HIV/AIDS.

sexuality will be an easy and natural thing. "A White mother of older children noted, "I realized that although we had talked about sex, relationships, etcetera, we had not talked enough about HIV prevention and other sexually transmitted diseases." Several mothers indicated the value of the Mothers' Voices handout on age-appropriate guidelines regarding sex education and questions to oe expected from their child. Dispelling taboos and developing confidence. Twelve

respondents (9.9%) described how the Mothers' Voices workshop helped to increase their feelings of comfort when speaking with their children. It appeared that the workshop gave participants the encouragement and permission to discuss previous "taboo" topics. One Cuban American motner noted: / am not the only one that has problems communicating about sex with my children. People my age has [sic] a lot of problems because this subject was taboo when I was young, and my mother never discussed sex with me or my brother.

Enhancing parents' HIV knowledge. Many respon-

dents (n = 28, 23.1%) identified that their own acquisition of information about HIV/AIDS was a beneficial aspect of the Mothers' Voices workshop and a necessary prerequisite to communicating with their children. A White non-Hispanic mother highlighted that the workshop taught her "information that I didn't know." A Cuban-American mother identified "the knowledge of HIV/AIDS prevention, transmission, statistics, dangers, and repercussion" as being the most valuable information that she learned. A Hispanic mother alluded to the value of workshop handouts and written materials in communicating with her children by "having the facts available for them to see and using examples that they can relate to." Tailoring communication to child's age. Nineteen re-

spondents (15.7%) indicated that they found information on how to tailor discussions on sexuality and HIV to their children's ages to be a useful outcome of the Mothers' Voices workshop. Age-appropriate information included the timing of the discussion and talking to the children at their developmental level. An African American mother addressed her increased awareness that "our children are exposed to and hear about sex at very young ages, and it is never too soon to talk about diseases." A White non-Hispanic mother noted that, at times, "we answer with a response that is more than what children want to know at the time." Another White mother commented on the importance of "giving explanations at their level." A White, Jewish mother remembered: "I guess what stuck with me the most was the overall importance of starting the communication early with your kids so that talking with them about any and all matters related to

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Respondents cited an increase in their confidence and ability to initiate and maintain conversations with their children regarding sexual issues and HIV. An African American mother highlighted that "that it is O.K. to talk about it [sex]', and another African American mother wrote that the workshop taught her "how to feel comfort when we be [sic] talking about HIV/AIDS." A Hispanic mother elaborated, "I feel more confident speaking about it." Valuing specific workshop components. Twenty re-

spondents (16.5%) identified specific aspects of the workshop that they found useful in later communication with their children. A White non-Hispanic mother appreciated "values clarification—identifying my own attitudes." An African American mother was most touched by "videos—especially commentaries from the yoimg people." A White non-Hispanic mother was moved by "the sharing of the leader with her family's personal story", and an African American mother valued "just being there with other people who has experienced it." Several other respondents responded favorably about experiential exercises such as role playing and communication practice sessions with other parents. UNMET NEEDS One hundred and three (85.1%) of the sample responded to the second question; "Have issues come up with your children that were not discussed in the workshop that you wish you had received education about?" Of these respondents, almost three-fourths {n = 76, 73.8%) indicated that they could not identify any topics that were not discussed. One White Jewish mother replied, "I only wish we could have heard

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more." Three themes emerged from the remaining responses: (a) sexuality and sexual behaviors, (b) more communication tips, and (c) religion and culture. Sexuality and sexual behaviors. Fourteen respon-

dents (13.6%) who answered the second question listed sexuality and sexual behaviors as specific topics that they would have liked to have discussed further at the workshop. For example, a Hispanic mother indicated that she would have appreciated information on " . . . helping them deal with their awakening sexuality and deciding what's normal and what's not (i.e., masturbation)." A White non-Hispanic mother noted that she would have liked further information on sexual orientation. Information on questionable sexual behaviors was also requested. For example, one Black mother wanted information on "inappropriate touching." Another Black mother wrote that she desired more information on sex under the influence of drugs. More communication tips. Four respondents (3.8%)

identified specific communication dilemmas for which they felt unprepared. For example, one Black mother responded, "When children recognize boy/ girl body parts, what do you say?" A Hispanic mother indicated that she needed help with "frarikness about premarital sex and how to talk about it, deal with it, and move past the anger." A White Jewish mother commented, "My 9 year old son has begun asking about erections. I'm not sure exactly how to handle his questions. I'm not ready to introduce sex yet, but may have to approach it from a scientific perspective." Religion and culture.Vour respondents (3.8%) de-

scribed how attention to religious views and cultural differences could have enhanced the educational workshop. For example, a Black mother noted that she would have liked further information on "reconciling spirituality and religious beliefs with sexual behaviors." Reflecting on cultural differences for mothers not born in the United States, a Hispanic mother noted: "I grew up in Cuba, and the environment in this country is very different. Here, the TV and the media talk about sex all the time. It has been very hard to accept the way of living in this country, but I am doing my best to cope with the situation and learn new things every day SURPRISES IN COMMUNICATING WITH CHILDREN ABOUT SEX

Ninety four respondents (77.4%) answered the third question, "Wriat has surprised you the most about giving your children this information. Of these, eight respondents (8.5%) specifically reported that there were no surprises, "at least not yet." As one White mother noted, "Nothing surprised me, but what concerned me was his 'head in the sand' atti-

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tude." The remaining responses were centered around three themes: (c) cnildren's reactions, (b) children's knowledge, and (c) ease of communication. Children's reactions. Over two-fifths of the mothers (n = 39, 41.5%) that answered the third question indicated that they were positively surprised by their children's interest, acceptance, and participation in discussing sexuality and safer sex benaviors. A Hispanic mother wrote, "They were really interested in hearing about it." A Black mother was surprised a b o u t ' . . . some of the questions they came up with. Overall, though, they seem interested in learning about HIV/AIDS." Another Black mother noted "Their attitudes have changed a whole lot." To the contrary, a few respondents (n = 3, 3.2 %) were surprised at their children's negative responses to the information they provided. For example, a CubanAmerican mother described "how uncomfortable they were initially", while a White mother was amazed that her daughter "just seemed uninterested." Children's knowledge. Seventeen respondents (18.1%) addressed their surprise upon learning that their children knew much more than they had thought about HIV/AIDS. In fact, several mothers, including a Hispanic mother who was surprised that "VIH leads to SIDA (HIV leads to AIDS)" and a White mother was shocked at the "statistics we're dealing with in South Florida", reported that their children knew more than they did. One Black mother elaborated that "the subject wasn't new to them—they were well educated about HIV." In contrast, some mothers (n = 7, 7.4%) were surprised that their children lacked information or had inaccurate information. A White mother was surprised that "they didn't get more information at school." A Hispanic mother commented that "children seem to know information, but it's inaccurate." A White Jewish mother was surprised that "they and their friends believe that oral sex and any activity other than intercourse is not sex!" A Black mother was surprised by the naivety of her children when she wrote, "By me being the mother and the grandmother, they didn't realize that if I am not careful myself, it can happen to me because I am still sexually active!" Ease of communication. Ten respondents (10.6%) who answered the third question reported their surprise about the ease of communication in talking to their children about safer sex and HIV. A Black mother replied, "I was surprised at myself, just being able to open up and talk to my children." A White Jew^ish mother wrote, "It was easier to discuss than I thought, and our conversations were very comfortable' , and another White mother remarked, "Once I began to answer the questions honestly, it wasn't so ernbarrassing." A Cuban-American mother elabo-

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rated on how discussions about safer sex and HIV positively impacted her relationship with her daughter: "It has opened up the communication, and I feel she is more comfortable coming to me about a variety of things." DISCUSSION ANE) IMPLICATIONS Grassroots organizations have historically been and continue to be important components of community-based HIV education and prevention (Elliot, Quinless, & Parietti, 2000; Fruedenberg, 1990; Mayer, Applebaum, Rogers, Lo, Bradford, & Boswell, 2001). These organizations often arose during the HIV epidemic because of personal experiences and perceived unmet needs in tne community. Because members and leaders within grassroots organizations knew their specific communities, they were able to provide services and programs that were both acceptable and accessible to the particular communities that they served. However, many grassroots organizations have not had the opportunity or resources to design and conduct formalized program evaluation in order to document the effectiveness of interventions or discover areas that need improvement or revision (Mertens & Carael, 1997). The evaluation of Mothers' Voices South Florida was possible because of a collaborative partnership between members of the organization and academic researchers who all shared a mutual interest in decreasing the rate of HIV infection, and preventing new cases of HIV in adolescents and young adults. Evaluations of this program were overwhelmingly positive. Additionally, findings highlighted specific beneficial aspects oi the program, a few areas of unmet needs or underaddressed topics, and surprises that mothers experienced when they actually talked to their children about sexuality and HiV/AIDS. Mothers' responses regarding the benefits of the program revealed that they valued both the "What" and the "How" of the curriculum—specific information on sexuality and HIV prevention as well as communication strategies and techniques for initiating and facilitating conversations with their children ofvarious age groups. In response to a question on issues that have come up with children that were not addressed in the workshop, a small subgroup of participants expressed a desire for more detailed "Whats" and "Hows". Mothers wanted more specific information on normal sexual development, sexual orientation, various forms of sexual activity, and risky sexual behaviors such as anal sex and sex with drug use. Responses from a few mothers emphasized the need for understanding and accommodating religion, culture, and family values in HIV education and prevention, further justifying the need for grassroots programs that take into account social context. Journal of Cultural Diversity • Vol. 11, No. 2

Findings regarding experiences in actual communications with children suggest that mothers initially perceived that discussions regarding sexuality and HIV risks would be difficult. However, they round that their children generally reacted positively and already had a certain amount of knowledge. Communication techniques learned through the Mothers' Voices program can used to facilitate discussions on other topic areas (e.g., drug and alcohol use), particularly if these techniques are incorporated into the parent-child relationship and daily interactions. One future implication for Mothers' Voices programs is to target interventions to various types of caregivers, particularly since findings from this study indicate that participants are often likely to attend for their grandchildren or nieces and nephews. Other familial relationships should be taken into consideration by moderators of the workshops. For example, "teachable moments" may have to be more creatively identified by participants who don't live with the significant children in their lives. In addition, in light of the fact that Black and Hispanic participants in this study reported proportionately larger family sizes than White participants, care should be taken to address how to reach multiple children simultaneously who are at various ages and developmental stages. Participants provided important feedback aoout the program curriculum components. Future workshops need to continue to provide what participants perceived to be the most beneficial aspects, namely providing factual HIV/AIDS prevention information, specific communication tips, and age-appropriate guidelines for communication in the context of cultural and family values. Ongoing program evaluation is particularly important in areas such as HIV/AIDS which are characterized by rapidly changing information and evolving demographic profiles. Ideally, findings from evaluation studies can be used to improve program delivery. If results are integrated into educational curriculum, participants' feedback actually guides future program development. In addition, the program information can aid the staff's morale by documenting success that has been achieved and can be used when marketing the program to future participants. REFERENCES

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Mertens, T, Carael, M., & Sato, P. (1994). Prevention indicators for evaluating the progress of national AIDS programs. AIDS, 8,1359-1369. Morse, J. M., & Field, P. A. (1995). Qualitative methods for health professions. (2nd ed.). Thousand Oaks, CA: Sage. Mothers' Voices (2003). Our mission, our history. Retrieved April 9, 2004, from http:// Mothers' Voices. (1998). Finding our voices: Talking with our children about sexuality ana AIDS. New York, NY: Author. Mothers' Voices. (2000a). Talking to your children about HIV prevention: Educating parents to communicate with their children about sexual health and HIV. Miami, FL: Author. Mothers' Voices (2000, Fall). The Newsletter ofMothers' Voices: Listen to Mothers' Voices New York, NY: Author. O'Connell, A. A., Bol, L., & Langley, S. C. (1997). Evaluation issues and strategies for communitybased organizations developing women's HIV prevention programs. Evaluation and the Health Professions, 20 (4), 428-454. Office of National AIDS Policy (2000). Youth and HIV/AIDSj)olicy 2000: A New American Agenda. Washington, DC: Author. Rhodes, T, Holland, J., & Hartnoll, R. (1991). Hard to reach or out of reach: An evaluation of an innovative model ofHIV outreach health education. London: Tuffnell Press. Sigelman, C. K., Mukai, T, Woods, T, & Alfeld, C. (1995). Parents' contributions to children's knowledge and attitudes regarding AIDS: Another look. Journal ofPediatric Psychology, 20 (1), 61-77. Acknowledgements: This work was funded in part by the Roblee Foundation and the Metro Miami Chapter of the Association of Nurses in AIDS Care. The authors wish to acknowledge the contributions of Barbara Gaynor and Amber Graham ofMothers' Voices South Florida in the development and implementation of the study. The authors also wish to express appreciation to Sally K. Fauchald, MA, RNfor editorial assistance.

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