7.+Vulnerable+Populations-+Children,+the+handicapped,+the+elderly+and+prisoners

Vulnerable populations Vulnerable populations are considered to be populations of people who may lack the ability to consent to participate in research (Cottrell & McKenzie, 2005). Cottrell and McKenzie (2005) identified a number of groups that are considered vulnerable groups, four of which are children, the handicapped, the elderly, and prisoner populations. Children 1.How does the topic affect research proposals? The topic of children affects research proposals because children cannot legally consent themselves, therefore leaving it up to the jurisdiction of their parent(s) or legal guardian until the child is 18 years of age in the United States (Goldfarb,2008). The UCL Research Ethics Committee (2014) suggests research with children only be done when: • the research question posed is important to the health and well-being of children. However, a research procedure which is not intended directly to benefit the child subject is not necessarily either unethical or illegal. Such research includes observing and measuring normal development and the use of ‘healthy volunteers’ in controlled experiments; • the participation of children is indispensable because information available from research on other individuals cannot answer the question posed in relation to children; • the study method is appropriate for children; • the circumstances in which the research is conducted provide for the physical, emotional and psychological safety of the child. All proposals involving research on children should be submitted to a research ethics committee for approval. 2. What must be considered? First and foremost, it is vital that participation in the research must always be in the child’s best interests. As a researcher it is critical to avoid distressing or offending participants. "Avoid introducing new and sensitive information to children (e.g. introducing the idea of pornographic sites to children previously unaware of them)." (What are the ethical issues involved in researching children, 2010). Children are young and impressionable and even the manner in which the research is presented to them may alter or sway the study. There are also inherent, "disparities in power and status between adults and children" (Morrow, n.d). The power dynamic needs to be managed affectively so that the children's 3.What challenges does it represent for research around sexuality related research? One challenge that dealing with children represent for research around sexuality related research is ethics, specifically in medical and psychological research. It is important to maintain the interests of all affected by the research, including considering the possible consequences of the study on the children and the misuse of the results (What are the ethical issues involved in researching children? (2010). Researchers need to know that ethical dilemmas may be ongoing through the duration of the study, not just at the point of contact with research subjects. As a result they must be ready to handle any that arise with a solid plan and composure. (Morrow,n.d). Another big challenge would be to get a cross section population of parent(s) or guardians that would allow their children to be involved in sexuality related research. One final challenge Depending on where in the country, or world, the research is being done laws may be different regarding child consent and research.  4. Give an example that illustrates the issue:  The HPV vaccine is recommended that "all girls and women ages 9 to 26 get an HPV vaccine" (Should I get an HPV vaccine? Should my child get one, 2014, para 1). Boys of the same ages can also get the vaccine. The Centers for Disease Control’s Advisory Committee for Immunization Practices, American Academy of Pediatrics and American Academy of Family Physicians "recommend that boys and girls get the HPV vaccine at age 11 or 12, long before they become sexually active to maximize protection. But even those who have had sex can benefit from the vaccine." (Should I get an HPV vaccine? Should my child get one, 2014, para 2). However, this clearly needs to be consented to by the parents because the first dose is often ideally administered while the child is not able to consent for themselves.

References: Goldfarb,N (2008). Age of Consent for Clinical Research. Journal of clinical Research and best practices. 4(6) Retrieved from: https://firstclinical.com/journal/2008/0806_Consent_Age.pdf Morrow, V (n.d). The ethics of social research with children and young people – an overview. Retrieved from: http://www.ciimu.org/webs/wellchi/reports/workshop_1/w1_morrow.pdf Should I get an HPV vaccine? Should my child get one? (2014). Retrieved from: http://www.plannedparenthood.org/health-info/stds-hiv-safer-sex/hpv/hpv-vaccine UCL Research Ethics Committee Guidance Note 1: Research Involving Children. (2014). Retrieved from: http://ethics.grad.ucl.ac.uk/forms/guidance1.pdf What are the ethical issues involved in researching children? (2010). Retrieved from: http://www.lse.ac.uk/media@lse/research/EUKidsOnline/BestPracticeGuide/FAQ13.aspx Handicapped Elderly 1. How does this topic affect research proposals? While elderly people are of a legal age to consent, ethical considerations for elderly populations mirror some of the concerns regarding research with children (Jokinen, Lappalainen, Meriläinen, & Pelkonen, 2002). According to Cottrell and McKenzie (2005) elderly patients can be mentally incapable in a way similar to how children may be developmentally incapable of making decisions. Thus, a research proposal needs to pay particular attention to the ability of the participant to voluntarily give informed consent. 2. What must be considered? Researchers need to pay special attention to the ability of elderly participants to understand the details of the study and consent accordingly (Harris & Dyson, 2001). To differentiate between elderly individuals who have the mental capacity to comprehend the information provided and those who do not, Harris and Dyson (2001) discussed using the mental status exam as an evaluation tool. These authors believed that this tool is not sufficient in determining the cognitive capacity of an elderly participant (Harris & Dyson, 2001). To compensate for the short comings of the mental status exam, the researcher's created their own assessment so that they felt confident the participants were competent enough to consent (Harris & Dyson, 2001). If the researchers determine the individual does not have the mental capacity to consent, they must seek a relative or proxy to consent on their behalf (Harris & Dyson, 2001). Consent by a relative can only be accepted if the relative is determined to be acting on the participant's best interest (Harris & Dyson, 2001). 3. What challenges does it represent for research around sexuality research? There does not exist a great volume of research surrounding sexuality and elderly individuals. This could be partially a result of society's tendency to desexualize elderly individuals as a segment of ageism (Hillman, 2005). An addition barrier to conducting sexuality research concerning elderly participants is difficulty in recruiting. For instance, in the Harris and Dyson (2001) study (while it was not a sexuality research study), the recruitment period for participants had to be extended due to high rates of both exclusion and refusal. Other authors have found that while some forms of recruitment are more successful, such as word of mouth, they may result in unintentional and unethical power dynamics that influence the individual's willingness to participate (Gledhill, Abbey, & Scheweitzer, 2008). 4.Give an example that illustrates the issue Gledhill et al. (2008) addressed this concern in their research by comparing five different methods of recruitment for elderly patients in a qualitative sexuality study. These author's attempted to recruit elderly individuals to participate in a sexuality topic interview using word of mouth, community advertising, media advertising, seminars, and direct solicitation (Gledhill et al., 2008) The researcher's found that word of mouth was the most effective form of recruitment for the study (Gledhill et al., 2008). It is significant to note that these authors included a segment in their paper that described the potential power relationship between the medical staff who were informed about the study and the patients they then introduced to the research material (Gledhill et al., 2008). Gledhill et al. (2008) suggested that the patients may percieve the health care providers as well educated, intelligent, authority figures. This, they concluded, might have impacted the ability of the participant's to provide "voluntary informed consent," (Gledhill et al., 2008, pp. 93). References Cottrell, R.R. & McKenzie, J.F. (2005). Health promotion & education research methods: Using the five-chapter thesis/dissertation model. Sudbary, MA: Jones and Bartlett Publishers. Gledhill, S., Abbey, J., & Schweitzer, R. (2008). Sampling methods: methodological issues involved in the recruitment of older people into a study of sexuality. Australian Journal Of Advanced Nursing, 26(1), 84-94. Harris, R., & Dyson, E. (2001). Recruitment of frail older people to research: lessons learnt through experience. Journal Of Advanced Nursing, 36(5), 643-651. doi:10.1046/j.1365-2648.2001.02029.x Hillman, J. (2005). Addressing Ageism in Elderly Sexuality. National Register of Health Service Psychologists. Retrieved from: http://www.e-psychologist.org/index.iml?mdl=exam/show_article.mdl&Material_ID=44 Jokinen, P., Lappalainen, M., Meriläinen, P., & Pelkonen, M. (2002). Ethical issues in ethnographic nursing research with children and elderly people. Scandinavian Journal Of Caring Sciences, 16(2), 165-170. doi:10.1046/j.1471-6712.2002.00076.x

Prisoners 1. How does this topic affect research proposals? According to Cottrell & McKenzie (2005), prisoner populations are vulnerable as a result of their position in society. These authors suggested that prisoners see researcher as people of authority who may have be able to either advance their current position for participating, or regress their position as a consequence for declining to participate (Cottrell & McKenzie, 2005). Further, according to Thomas (2010) ethics guidelines for medical studies prohibit the research from using prisoners for more than 50% of the population. These same authors insisted that the cost benefit ratio must suggest that the benefits outweigh any potential costs to the inmates (Thomas, 2010). 2. What must be considered? Apa et al. (2012) identified a number of different variables that need to be carefully considered in conducting research with inmates. In regards to recruitment, inmates are likely to refrain from participating if other inmates explicitly condemn the study (Apa et al., 2012). It is important, then, for researchers to carefully select recruitment procedures that eliminate peer pressure. Additionally, prisoners may be unlikely to answer truthfully to questions regarding illegal behaviors (Apa et al., 2012). Drug use and participation in prison fights are likely to be underreported as a resulting from fears of consequences (Apa et al., 2012). These authors suggested a combination of prisoner interviews as well as evidence from medical and prison records to accommodate underreporting. The last consideration brought forth by Apa et al. (2012) is in regards to privacy. According to the article, creating a positive working relationship with the inmates is essential to quell fears that the information will be shared and result in consequences (Apa et al., 2012). It should also be enforced that participating in the study will not result in any benefits - as incentives can sway the participants into risky situations. For increased security of information, Apa et al. (2012) conducted interviews in private, secure rooms. 3. What challenges does it represent for research around sexuality research? While research involving the ethical challenges of sexuality research with prisoners is difficult to find, the previously mentioned considerations for research are particularly significant when prisoner participants are involved. Sexuality is a particularly sensitive and private topic for a lot of people, and vulnerable populations may be even more likely to restrict their responses for fear or persecution (from inmates or prison employees) (Apa et al. 2012). 4.Give an example that illustrates the issue Finding little to no research involving sexuality, ethics, and prisoner populations the example chosen is in relation to a biomedical study on prisoners conducted in by Dr. Georg August Weltz (Etheridge, as cited in Hornblum, 1997). Weltz promised prisoners who participated in his study on pellagra a governer's pardon on their prison sentences, an incentive that would persuade prisoners to take part in a dangerous study (Etheridge, as cited in Hornblum, 1997). Weltz's research was a success, and the prisoners were pardoned - however a participant in the study was quoted saying that, "he would choose a 'lifetime of hard labor,' rather than go through such a 'hellish experiment' again," (Etheridge, as cited in Hornblum, 1997). Had the inmates not been offered such a significant incentive, they may not have chosen to undergo such a torturous experiment. References

Apa, Z. L., Bai, R., Mukherejee, D. V., Herzig, C. A., Koenigsmann, C., Lowy, F. D., & Larson, E. L. (2012). Challenges and Strategies for Research in Prisons. Public Health Nursing, 29(5), 467-472. doi:10.1111/j.1525-1446.2012.01027.x Cottrell, R.R. & McKenzie, J.F. (2005). Health promotion & education research methods: Using the five-chapter thesis/dissertation model. Sudbary, MA: Jones and Bartlett Publishers.

Hornblum, A. M. (1997). They were cheap and available: Prisoners as research subjects in twentieth century America. BMJ: British Medical Journal (International Edition), 315(7120), 1437-1441.

Thomas, D.L. (2010). Prisoner research - Looking back or looking forward? //Bioethics// //24//(1): 23-26. doi:10.1111/j.1467-8519.2009.01777.x

Handicapped 1. How does this topic affect research proposals? Handicapped populations present unique challenges to research due to the type and severity of the disability. Many studies have extremely small sample sizes, and take a long time to complete (CITE). Depending on the focus of the study, many researchers tend to only allow people with specific types of disability to be included in one study at a time, and frequently avoid subjects who have both physical and mental and/or learning disabilities, such as East & Orchard (2013) who focused solely on subjects with physically degenerating diseases like Spina Bifida and MS in order to gain specific narratives. Ethical considerations for interviewing people with intellectual disabilities must also be taken into account due to capability of understanding the scope and purpose of the study, as seen in studies such as Bernert & Ogletree's interviews of women with intellectual disabilities and their perceptions of sex (2013). 2. What must be considered? Ethical boundaries and guidelines for studying people with physical, mental, and/or learning disabilities must be utilized differently from able bodied populations. Bernert & Ogletree (2013) had to adapt their interview questions with open ended options, to gain the most insight into the women they were speaking to. They also had to gain specific permissions from agencies such as assisted living facilities in order to get access. The methods used in many of these studies included guided, semi structured, and open ended interviews. There is extremely limited research on actual methodology for studies focused on mentally and physically disabled populations, which presents a unique challenge in terms of developing appropriate guidelines. 3. What challenges does it represent for research around sexuality research? The biggest challenge for this population is stigma. As noted in East & Orchard (2013) and particularly in McCabe & Holmes (2013), finding people willing to even discuss sexuality and disabled people is difficult. In McCabe & Holmes, even professional nurses found it difficult and awkward to bring up the idea of sex with their patients. Breaking the barriers of believing disabled people are asexual or unworthy and/or incapable of sexual attraction is the first step, but the largest challenge in research focusing on this population. There were no articles to be found on specific methodology for this, only studies already conducted all sharing similar constraints of: number of willing/able participants; type of methods that can be used (most using interviews as opposed to surveys, control experiments, and technology based programs); outright ignorance of sexual topics, making insights difficult to glean; and access to participants with barriers such as caregiving agencies and parents/guardians. Intellectually disabled people may have difficulties consenting to the study if they can't understand its scope or purpose, which creates major ethical concerns based on the definition of consent utilizing legal capacity, as defined in Cottrell & McKenzie (2005) (loc 3216 on Kindle version). 4. Give an example that illustrates the issue. In Bernert & Ogletree's study of women with intellectual disabilities, the researchers had to adapt their interview questions to be as open ended as possible so the range of participants could understand the questions. This resulted in a wide range of definitions of even basic concepts like "what sex is", and what risks they may be taking when having sex. In East & Orchard (2013), they interviewed health professionals, adolescents with physical disabilities, and their parents. Each adult admitted they considered sex education to be someone else's responsibility. As a result, the children involved were receiving little to no comprehensive education on sex and sexuality, and many of them reported they weren't even aware they were capable or allowed to be sexual or have sexual attractions (p. 341). Without basic knowledge of the topic itself, researchers have extreme difficulty being able to conduct their studies with these populations.

References Bernert, D.J. & Ogletree, R.J. (2013). Women with intellectual disabilities talk about their perceptions of sex. Journal of Intellectual Disability Research. Vol 57, pt 3 pp240-249 doi: 10.1111/j.1365-2788.2011.01529.x

Cottrell, R.R. & McKenzie, J.F. (2005). Health promotion & education research methods: Using the five-chapter thesis/dissertation model. Sudbary, MA: Jones and Bartlett Publishers.

East, Lauri J. & Orchard, Treena R. (2013). Somebody else's job: Experiences of sex education among health professionals, parents, and adolescents with physical disabilities in southwestern Ontario. Sexuality & Disability, 32(3), 335-350. doi:10.1007/s11195-013-9289-5

McCabe, J., & Holmes, D. (2014). Nursing, sexual health and youth with disabilities: a critical ethnography. Journal Of Advanced Nursing, 70(1), 77-86. doi:10.1111/jan.12167