Older adulthood brings with it a set of unique challenges that includes transitions from one’s social roles, responsibilities, and an increased risk of having a chronic disease, and overall change in social networks (Brennan, 2008). HIV/AIDS represents a convergence of challenges at the physical, psychological, spiritual and service levels (Emlet & Shippy, 2008). The challenges men over 55 with HIV/AIDS face are compounded due to their age, greater risk of stigmatization, and marginalization by a society inadequate to meet their needs (Linsk, 2000).
HIV/AIDS in the United States has been viewed by society and by most scholars as a disease that primarily affects younger people specifically homosexual men (Martin, Colford, Ngo, & Tager, 1995; Wooten-Bielski, 1999). Indeed, after examining sexual orientation, race, and gender characteristics, the majority of individuals diagnosed with HIV/AIDS in the United States are men between the age of 18 and 45 (Shippy & Karpiak, 2005). White men were the first group disproportionately affected by HIV/AIDS, and data suggest that male to male sexual contact did account for 69% of how the disease was originally contracted with heterosexual contact accounting for only 8% of the method of contraction (Los Angeles County Public Health Records, 2008). 8 Because the majority of men infected with the disease are between the ages of 18 and 45, more resources exist for younger men. Therefore, older men infected are at greater risk due to lack of appropriate resources (Ferro & Sallit, 1992). However, men over the age of newly diagnosed with HIV/AIDS have experiences similar to younger people. Men over the age of 55 are infected in the same ways as younger men, live with the same HIV stigma, and they too must learn to obtain appropriate care and to manage complicated treatments (Emlet & Poindexter, 2004).
Older men with HIV/AIDS face some different struggles than younger men. They are being considered the “invisible ten percent” (Genke, 2000, p. 196), and the hidden HIV/AIDS population (Emlet, 1997; Emlet & Poindexter, 2004). Emlet Ph.D., M.S.W., is a renowned scholar who has done extensive research in the area of older persons with HIV/AIDS and issues of stigma and service delivery for person living with HIV/AIDS. Emlet (1997) supplements the idea of Genke (2000) through statistical information, and he estimates that adults over the age of 50 make up 10% of all HIV/AIDS cases within the United States, and this number will gradually increase during the 21st century. Emlet and Poindexter, along with Lieberman (2000), argue that the percentage of HIV/AIDS diagnoses for men over 55 may even be higher because most HIV/AIDS cases are diagnosed in the late stages of the virus.
The focus of this literature review is older males diagnosed with HIV/ AIDS. As increasing numbers of older adults with HIV live longer lives, it is incumbent upon social workers, AIDS service providers, and the health care system in general to better understand the factors that contribute, either positively or negatively, to their quality of life (Emlet & Shippy, 2008).
The AIDS epidemic in the United States emerged in the mid 1970s and was first identified by the Centers for Disease Control and Prevention (CDC) Morbidity and Mortality Weekly report in June 1981 (CDC, 2008). Within the CDC’s Morbidity and Mortality Weekly report the first cautionary report was made regarding an unusual outbreak of Pneumocystis Carinii Pneumonia (PCP) among 5 previously sexually active, healthy, homosexual men in Los Angeles, California. It was these first 5 cases that were documented as the first reported cases of AIDs within the United States. The diagnosis that was presented was a rare type of cancer, and the symptoms being presented were rare and previously found in severely immune suppressed persons (CDC, 2008). However, it was not until 1982, when AIDS was discovered as a blood-related disease, that the term Acquired Immune Deficiency Syndrome was used for the first time (AIDS Education Global Information System [AEGIS], 2007). Then in 1983, scientists identified the virus that causes AIDS (CDC, 2007).
During the 1990s, a shift occurred in the focus of how HIV/AIDS programs are mobilized. Prior to the 1990s, HIV/AIDS programs were focused on more traditional ideas that promoted the disease as an individualist risk where programs were focused on information focused prevention programs. Since the 1990s, programs focus on HIV/AIDS in an empowerment approach that focuses on community involvement. The empowerment approach is based on social changes in gender and relationships, therefore, establishing the link between social vulnerability and the needs for programs and resources to be offered (Paxton, 2002). As a result support groups have become more widely used approach within the HIV/AIDS community.
In the last 25 years, there has been an unprecedented mobilization of resources to stop the epidemic, and during this time the CDC has supported a vast array of HIV/AIDS prevention programs (Center for HIV Information, 2003). The CDC credits grass root efforts by homosexual men in San Francisco and New York for the first HIV prevention activities. The activities of these early grassroots efforts were primarily designed “to increase AIDS awareness, reduce unfounded fears about transmission, and provide basic information regarding symptoms, likely transmission routes, and risk-reduction strategies” (CDC, 2006a, p. 598). Currently HIV/AIDS educational materials can be acquired by contacting the CDC, state and local health departments and most community based organizations involved with the prevention and treatment of HIV/AIDS (CDC, 2006b). Most of these materials are aimed at specific at-risk populations. Findings indicated that even printed materials geared toward older adults have remained scare in public health agencies and other HIV/AIDS service agencies charged with the distribution of HIV/AIDS informational literature (Orel, Wright, & Wagner, 2004). Due to the advances in medical prevention and medicine, specifically Highly Active Antiretroviral Therapies (HAART) in the late 1990s, it is likely that men between the ages of 18 and 45 will live longer lives (Manton & Stallard, 1998). HAART allows individuals infected in middle age to live into old age thus creating two populations; those infected later in life and those infected earlier both now aging with HIV/AIDS (Emlet & Shippy, 2008; Mack & Ory, 2003).
Several factors could account for the increasing numbers of diagnoses of HIV/AIDS among older adults. First and foremost, individuals diagnosed with HIV/AIDS are living longer due to the widespread availability of highly active antiretroviral therapy (HAART) which has enabled infected persons to have increased longevity and a reduced mortality rate (Shippy & Karpiak 2005). At the beginning of the HIV/AIDS epidemic the average newly infective person had a life expectancy of approximately 10 years from initial diagnosis to death (DiClementi, Ross, Mallo & Johnson, 2004). A factor which has increased infections among older males is that older adults are more likely to engage in unprotected sexual activities due to the absence of pregnancy concerns (Williams & Donnelley, 2002). A third factor is the availability of sexual drugs such as Viagra and Cialis which allow men to maintain their sexual performance later in their lives with vigor comparable to their younger years (Vance & Robinson, 2004). Finally, many older adults who remain in long term monogamous relationships assume their partners to be sexually faithful with only them (i.e., one partner) and this may not always be accurate (University of California, San Francisco, 2000). Lieberman (2000) asserts, for example, that older males may be more likely to use prostitutes for sexual activities and thus put themselves and their partners at risk for contracting a sexually transmitted disease.
During the 1990s, HIV was transformed for many patients in industrialized nations from a fatal diagnosis to a manageable chronic disease requiring daily medication and occasional visits to the doctor’s office (Sepkowitz, 2001; Stoff, 2004). Medication regimens allow individuals to live more normal lives in which HIV/AIDS is no longer a progressive fatal diagnosis but rather a chronic disease that requires managing with pharmaceutical treatment (Palella et al., 1998; Tashima & Carpenters, 2003). However, it was emphasized the importance of consistent management of the disease even in light of the medical advancements because HIV/AIDS is a co-morbid chronic condition (Palella et al). The impact of this rapid increase in numbers of older adults will be felt within healthcare industry specifically due to chronic health conditions. In 2005, 88% of all American older adults had one chronic health condition and 50% had two or more (CDC, 2005). Some of these common chronic conditions include diabetes, heart disease, osteoarthritis, cancer, and stroke (Chodosh et al., 2005). Not all chronic diseases are life threatening but like HIV/AIDS they are all incurable and place significant burdens on health and quality of life for older adults. Chronic diseases can negatively affect the psychological well-being of older adults and they can cause pain fatigue, lack of energy and decreased amount of personal independence (Wolff, Boult, Boyd, & Anderson, 2005). Older adults with HIV/AIDS over the age of 55 are at an increased risk because they are susceptible to an on average 4 times more co-morbid health conditions (Emlet & Nokes, 2006).
Sexuality is a fundamental aspect of life and sexual activities do not disappear as one ages (Wooten-Bielski, 1999). However, the myth that exists in American society is that older adults are neither interested in nor engage in sexual activities (Wooten-Bielski). Contrary to this myth older adults actually make up a population that have unprotected sex and engage in risky behavior to counteract the effects of the inevitable life changes in hopes of feeling a connection to others (Orel, Spence, & Steele, 2005). In 1996, Whipple and Scura found that among senior housing communities older adults did report being sexually involved with other members. In fact older adults between the ages of 60 to 71 which comprised 65% of that community admitted to engaging in various modes of sexual activity. This study suggests that older adults do engage in sexual acts.
This American myth that older adults do not engage in sexual activities has also been a factor in the delayed and even lack of HIV/AIDS diagnosis for this population. Health care providers, including physicians, have been found to not engage in conversations or run lab reports regarding HIV/AIDS because they assume that this population does not engage in sex let alone within risky settings (Drench & Losee, 1996; Orel et al., 2005; Wooten-Bielski, 1999). Williams and Donnelly (2002) found that physicians more often discuss safe sex practices and risk reduction with adults under the age of 30 than with adults over the age of 50. Studies have indicated 40% of primary care physicians do not evaluate for HIV risk in patients over the age of 50 (Orel et al., 2005).
The National Institute of Aging (2001) found that older adults living with HIV/AIDS face a double stigma from both ageism and HIV/AIDS. Ageism is a lack of respect or value of an individual based on his age. It consists of negative stereotyping and discrimination (Fowler, 1999). Older adults with HIV/AIDS are more likely to experience social and professional bias regarding health care services and available resources as a result of ageism (Fowler). Ageism exists and can be experienced in the lack of resources and programs available to meet older adult’s needs (Emlet & Poindexter, 2004). Social service programs that include case management, support groups, and education exist in large quantities for those living with HIV/AIDS under the age of 50. Social services specifically focused on older adults have greatly increased within the recent years, such as; geriatric case managers, senior centers, and aging services. Ageism is experienced because of the lack of coordination between aging and HIV/AIDS agencies. Many of these two entities have not come together to offer a best practice approach to serving this growing population of older adults living with HIV/AIDS. Anderson (1998) found that HIV case managers and counselors tend to know more about service for older Americans and gerontological workers have insufficiently explored HIV services. Therefore older adult males 55 and older with HIV/AIDS feel as if they do not fit in and cannot identify with others when seeking services which can increase isolative behavior (Emlet & Nokes, 2006; Emlet & Poindexter, 2004). Emlet and Nokes deduced that due to the lack of coordination older adults are more likely to not utilize either organization’s resources further increasing their risk of isolation.
The older adult population continues to grow in numbers and diversity. In 1998 16% of older adults over the age of 65 were from a minority group with a projected increase to 25% by 2030 (Hooyman & Kiyak, 2004). Many adults in minority groups receive extensive social support from their informal social systems (Heckman et al., 2000). Heckman and colleagues (2000) examined the influence of race on coping and social support among 72 midlife and older men. The study found that African American men received more support from immediate family members than white men. However Africa American men were less likely to disclose their HIV/AIDS status to their friends. Hooyman and Kiyak asserted that for older adults their church is often an important source of support.
Stigma has been identified and recognized as a major concern within the health care human services field across societies worldwide (Mak, Poon, Pun, & Cheung, 2007). Stigma was first identified and defined by one of the greatest American sociologist, Erving Goffman who is best known for his lifelong study of stigma, social identity and symbolic interaction. Goffman (1963) stated that HIV stigma is best defined as a spoiled sense of identity that discredits a person in society. Stigmatization is the process by which individuals experience prejudice, discrimination, stereotyping due to a devalued physical, behavioral, or medical condition that conveys on a social identity (Dovidio, Major, & Crocker, 2000). The negative impact of the stigma associated with HIV/AIDS infection is well documented. The experience of stigma can impact both the overall wellbeing and the behaviors of people living with HIV/AIDS (Brooks, Etzel, Hinojos, Henry, & Perez, 2005; Mak et al, 2007; Preston et al., 2004; Valdiserri, 2002). Older adults face increased risk of HIV stigma, opposed to those under the age of 45, due to their more fearful and daunting feelings regarding their diagnosis (Anderson, 1998; Lavick, 1994; Marr, 1994). HIV stigma has been found to affect one’s interpersonal and psychosocial life with feelings of shame, guilt, fear and anger (Bennett, 1990; Laryea & Gien, 1993), mental strain (Green & Piatt, 1997), and feelings of self loathing (Herek et al., 1998). The fear of stigma is so great that older adults are more apt to keep their diagnosis a secret which can create lasting psychological isolation and depression. Lack of disclosure is a highly discussed topic in relation to psychological well being for those living with HIV/AIDS (Paxton, 2002). Furthermore in disclosing, isolative patterns, depression, and anxiety have been shown to be relieved (Paxton).
Since the early 1980s, much focus has been placed on the relationship between stigma and its effects on disclosure amongst those living with HIV/AIDS. A study done by Paxton (2002) found that adults who did disclose their diagnosis experienced fewer social complications such as stress isolation and depression. Paxton (2002) deduced a therapeutic psychological release comes with true disclosure. Older adults with HIV/AIDS are less likely to disclose their diagnosis than younger adults (Emlet & Nokes, 2006). Reasons for less disclosure by older adults mainly include increased amounts of stigmatization. When older adults disclose their diagnosis, they are stigmatized not only for their HIV/AIDS diagnosis but also for participating in behaviors that put them at risk for HIV/AIDS and which are viewed as morally wrong (Solomon, 1996). For older adults their issue surrounding disclosure can become more complicated because their fears of rejection. However, by not disclosing they are unknowingly putting themselves at a greater risk for stress, isolation and mental health problems (Paxton). When a person with HIV/AIDS finds support and discloses his diagnosis to others who understands his diagnosis, the stress associated with holding back is released (Paxton). Therefore, reviewing stigma with those infected and defining the debilitating effects it can have on males are components of treatment for this population.
In fact, Emlet (2006) interviewed 25 older men over the age of 50 regarding their HIV/AIDS diagnosis. 17 of the respondents said they experienced both HIV stigma and ageism. Emlet found that older adults over the age of 55 experience rejection by stereotyping and internalized ageism. The study concluded that older adults who have a social support system with whom they can discuss their diagnosis experience fewer negative effects of stigma.
Social support is needed for older adults males with HIV/AIDS and well documented in literature is the relationship between higher levels of social support among older adults with HIV/AIDS and a more positive lifestyle both emotionally and physically (Crystal et al., 2003; Cox, 2002; Chesney, Chambers, Taylor, & Johnson, 2003). Higher levels of social support lead to an increased overall positive attitude which influences the quality of life for older adults with HIV/AIDS including; feelings of peace, ability to manage stress, and ability to adhere to medication plan (Cox; Chesney et al.; 18 Crystal et al.). Support groups are one effective mean of sustaining a social network to reduce depression and hostility and promote wellness (J. Kelly et al., 1993). Emlet (2005) found the availability of an affective support system and the availability of instrumental social support to be negatively correlated with HIV stigma in a population of 88 older and younger HIV infected individuals. The more social support older adult males 55 receive the better the outcome regarding medical adherence and emotional issues (Catz et al., 2002; Emlet & Nokes, 2006; Emlet & Poindexter 2004; Shippy & Karpiak, 2005).
Older adults with social support are more likely to receive needed empathy, validation and encouragement regarding their illness which can increase overall quality of life (Heckman, Kochmn & Sikkema, 2002). However, the growing population of older adults with HIV may not have available the protective effects of support from family and friends (Emlet & Shippy, 2008). Older adults are more likely than younger adults to live by themselves (Crystal et al., 2003; Emlet & Berghuis, 2002; Emlet & Farkas, 2002) which puts them at an increase risk for social isolation. Older adults who live alone, receive little support from friends, and have limited access to support services can have significantly higher rates of anxiety and depression (Heckman et al., 2002).
According to Emlet and Shippy (2008), those infected with HIV who engage in active coping strategies report improved quality of life. A study by Lee and RotheramBorus (2001) found that a coping style that involved seeking social support was associated with an increased survival rate over a period of 28 months in a population individuals living with HIV. Brennan (2008) suggested that coping mechanisms that involve a group such as a religious or a spiritual group can act as an important coping mechanism for older adult males with HIV/AIDS. In a study of 83 older HIV infected adults, Heckman, Kochman, & Sikkema, (2002) found a significant correlation between coping and social support and decreased social isolation.
Three major psychological issues, social support, stigma and coping for older adult males with HIV/AIDS can be addressed by intervention processes (Shippy & Karpiak 2008). Social support networks have been consistently acknowledged as crucial elements in the lives of those living with HIV/AIDS (Emlet, 2006) with informal social networks playing an important role. Informal social networks can consist of an individual’s family and friends. Emotional, informational, and instrumental assistance received by friends and family can lessen the negative effects of HIV/AIDS such as; stigmatization, isolation, and depression (Shippy & Karpiak). Older adult males with HIV/AIDS informal social support networks are more likely to experience more conflicts than younger individuals infected with HIV/AIDS. Conflict compromises their ability to receive the beneficial effects of their needed support (Crystal et al., 2003; Shippy & Karpiak). Older males specifically lack support, and older men with HIV/AIDS are more likely than women to receive inadequate social support whereas women with HIV/AIDS report receiving sufficient amounts of support (Shippy & Karpiak). Schrimshaw and Siegel (2003) interviewed 63 adults ages 50 and older living with HIV/AIDS and found that approximately 26 of these participants felt their informal support networks were inadequate. The reasons for inadequate support included the unavailability of family and death of friends (Scrimshaw & Siegel). In 2002, a study done by Heckman et al. examined 83 males over the age of 50 based on their social support within a quality of life model. They found a relationship between older adult males with HIV/AIDS who receive little to no support from family and friends and increased risk for isolation and mental health issues. The study asserted that the more informal support the adults received the more likely they were to seek out and utilize formal support services including support groups and medical treatment.
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Research indicates support groups offer adults many benefits for all involved that include the opportunity to have face-to-face contact, an opportunity to encounter others who share in similar situations, to offer emotional support to others, to experience mutual aid, to enable dialogue, to improve coping all within a positive and nurturing private forum (Curry, Walker, & Hogstel, 2005). For those with HIV/AIDS social support has been repeatedly associated with psychological functioning, including psychological wellbeing (Catz et al., 2002; Collins, 1994; Cowdery & Pesa, 2002), positive state of mind (Turner-Cobb et al., 2002), coping with the stress of the disease (Crystal & Kersting, 1998), and quality of life (Gielen, McDonnell, Wu, O’Campo, & Faden, 2001).
Many support groups for those infected with HIV/AIDS have been focused on providing education as an intervention. Assistance is offered on such things as safer sex practices and HIV/AIDS disclosure in order to decrease the spread of the disease (Kalichman, Rompa, & Cage, 2005). Promoting safe sex within a support group setting has been found to be an effective and successful intervention as exhibited in the following interventions (Coates, McKusick, Kino & Stites, 1989; Orel et al., 2005). A 1980s, stress management program geared to HIV/AIDS males used practices such as relaxation training, exercise, diet and self management skills for stress reduction (Coates et al., 1989). This mental health approach was specifically used to decrease the sexual risk involved in having multiple sexual partners and unhealthy relationships. This program showed that a mental health approach focusing on support and stress reduction can have positive consequences for males living with HIV/AIDS. Oret et al., (2005) found that older adults who had less social support and decreased amounts of interactions within relationships had an increased likelihood of turning to new relationships that focused solely on sexual encounters thus putting themselves and others at greater risk.
Support groups can train individuals to make positive behavioral changes that can include seeking others for support, increasing awareness about safe sex practices, and encouraging ongoing disease management (Buck, 1991; Kalichman et al., 2005). Older person who maintain membership in a support group demonstrate improved treatment outcomes that include practicing safe sex Using protection and disclosure of disease which can decrease the spread of the HIV/AIDS virus (Messed, Kim, & Whetten, 2003). Support groups can offer both mutual support and education so participants can manage their own health. The mutual aid offered can be crucial for patients with chronic disease like HIV/AIDS (Kalichman et al., 2005).
In such interventions where safe sex practices were the focus, older adults were found to have better overall outcomes when any form of support was sought. Therefore, the argument can be made that an individual with HIV/AIDS can benefit from support group atmospheres because they promote empowerment, mutual support, and an opportunity for personal growth (Marino, 2007). Within this type of a group atmosphere older adults are more likely to share their common challenges, issues, and even common needs in others in order to enhance their own life (Kalichman et al., 2005).
The importance and beneficial effects of support groups for those living with HIV/AIDS has received large amounts of attention and has proven that social support is needed for those with HIV/AIDS. However, Shippy and Karpiak (2005) pointed out that most of this research has been focused solely on younger gay men living with HIV/AIDS. In fact, many studies that have examined social support in HIV/AIDS individuals either did not focus on age or totally neglected age as a variable (Catz et al., 2002; Cox, 2002).
Social service groups are needed in order to provide specialized support to this marginalized population. AIDS service organizations (ASOs) and community based organizations (CBOs) have been organized to provide support as well as other necessary services to the HIV/AIDS population (Shippy & Karpiak, 2005). However, Linsk (2000) argued that these agencies do not offer age sensitive services for older adults living with the disease. When addressing future social services and funding sources, the specific challenges of stigma, ageism, and increased isolation older adults face should receive necessary attention and funding (Peate, 2007).
Homogeneity is a critical component of successful support groups for males over the age of 55 who have HIV/AIDS because the ability to focus on commonalties that participants live and deal with increases effectiveness of support received (Wood, 2007). The proposed support group will be a homogenous group of males over the age of 55. Data suggest that in general members involved in homogenous groups do to tend to come together more as a team, in such a group becomes more cohesive, offers more immediate support, maintains better consistent turnout, experiences less conflict, and provides more immediate relief from symptoms (Yalom, 1995).
Many studies exist on older adults and HIV/AIDS. Three intervention based approaches similar to the proposed project were found that yielded positive outcomes related to increasing support for older adult males over the age of 50. Heckman et al. (2001) reported on a coping group intervention that was run like a support group which consisted of 10 face-to-face group sessions each lasting 75 minutes. The groups were kept small and homogenous according to gender and a closed group format was chosen. The group had 10 goals which were focused around the issues of building rapport, establishing trust and increasing coping skills and increasing quality of life with HIV/AIDS in later life. The researchers found that participating in this type of cognitive behavioral coping improvement group intervention may enhance coping and adjustment among older adults with HIV. Those that participated reported higher rates of problem solving, increased support from friends, higher perceptions of social well-being, and less stress as a result of AIDS-related loss and health worries (Emlet & Shippy, 2008).
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A 2003 telephone based support group which offered a psycho-educational approach in support of older HIV positive individuals focused on staying healthy, managing symptoms, optimizing medication, and coping with loss (Nokes, Chew, & Altaian, 2003). This telephone based intervention was co-facilitated by a social worker and registered nurse with sessions running 50-60 minutes for duration of 10 weeks. Researchers indicated that the inability to have face-to-face contact created a challenge specifically due to the lack of non-verbal cues which inhibited rapport building and respect towards other members. Yet the participants, who were gay and heterosexual males, found that sharing coping strategies created feelings of connection between the other members.
The intervention study of Heckman et al. (2008) involved a 12 session coping improvement group intervention delivered by teleconference. For this group all participants had to be over the age of 50, and had to have a HIV/AIDS diagnosis and a history of depressive disorder. Each of the group sessions was held weekly and lasted 90 minutes. This group intervention focused on problem focused coping, how to increase social support, group cohesion, and emotion focused coping. The researchers indicated that participants reported fewer psychological symptoms, less life stress, and healthier coping strategies at the end of the program.
Similar to the above mentioned three interventions, the project proposed herein combines the benefits of support groups with the added benefits of both an educational group that will focus on older persons with HIV/AIDS who have unique needs. Similar to most face-to-face support groups, the group will meet for 90 minutes once a week and will disband after 6 weeks. This closed, time limited approach will allow for all 5 phases of group development (namely, preliminary, beginning, work, and ending) to progress uninterrupted in sequential fashion. If the grant proposal is successfully funded, participants will receive basic information regarding AIDS Project Los Angeles (APLA) resources and other local agencies that offer HIV/AIDS related services. Therefore, for that reason, the proposed project will be coordinated in conjunction with APLA’s new client enrollment department which is located in Los Angeles, California.
Older men with HIV/AIDS may soon emerge as one of the largest segments of the HIV population (Brennan, 2008). Social workers and other health professionals must have an increased understanding of the impact of this disease on older adults over the age of 50 (Emlet & Shippy, 2008). It can no longer be accepted that older adults are immune from being infected with the HIV virus. As numbers of older persons at-risk for living with HIV/AIDS increases, clinical research must be combined with clinical practice so that integration occurs and gaps do not exist between research and practice with clients (Emlet & Shippy 2008)
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