Challenges,Coping Strategies,and Recommendations Related to the HIV Services Field in the HAART Era: A Systematic Literature Review of Qualitative Studies from the United States and Canada

Abstract

Qualitative research methods have been utilized to study the nature of work in the HIV services field. Yet current literature lacks a Highly Active Anti-Retroviral Treatment (HAART) era compendium of qualitative research studying challenges and coping strategies in the field. This study systematically reviewed challenges and coping strategies that qualitative researchers observed in the HIV services field during the HAART era, and their recommendations to organizations. Four online databases were searched for peer-reviewed research that utilized qualitative methods, were published from January 1998 to February 2012, utilized samples of individuals in the HIV services field; occurred in the U.S. or Canada, and contained information related to challenges and/or coping strategies. Abstracts were identified (n=846) and independently read and coded for inclusion by at least two of the four first authors. Identified articles (n=26) were independently read by at least two of the four first authors who recorded the study methodology, participant demographics, challenges and coping strategies, and recommendations. A number of challenges affecting those in the HIV services field were noted, particularly interpersonal and organizational issues. Coping strategies were problem- and emotion-focused. Summarized research recommendations called for increased support, capacity-building, and structural changes. Future research on challenges and coping strategies must provide up-to-date information to the HIV services field while creating, implementing, and evaluating interventions to manage current challenges and reduce the risk of burnout.

Introduction

R esearch has extensively examined the challenges that HIV services staff encounter, finding a “dual threat” of stressors.¹ Stressors related to social work (e.g., heavy workloads, poor pay, unpleasant working environments, and bureaucratic restrictions)² coexist with stressors attributable to HIV/AIDS, such as HIV-related discrimination/stigma, sexuality, and fear of contagion.^3
–5 Consequently, HIV services staff endure a high level of burnout that may exceed that of their counterparts in other fields.^4,6
–8

Knowledge pertaining to treating, managing, and curbing the effects of HIV has increased over time as the epidemic has progressed. The implementation of Highly Active Anti-Retroviral Treatment (HAART) in the mid-1990s has increased the survival time of HIV-positive individuals.⁹ However, in decreasing the number of AIDS-related deaths and subsequently increasing the number of persons living with HIV, HAART and other medical advances have changed the types of challenges related to working in the HIV services field.¹⁰ The increased prevalence of HIV-positive individuals needing care, with a less than proportionate increase in HIV services staff, has resulted in increased patient loads for HIV services staff.

Current literature lacks a HAART era compendium of the challenges and coping strategies in the HIV services field. The most recent review was published almost 20 years ago.¹¹ Despite the challenges associated with working in the HIV services field that arose with the advent of HAART, it is also important to consider the coping strategies that allow individuals working or volunteering in the HIV services field (henceforth collectively referred to as “helpers”) focus on the benefits of their work. In addition, recent research has utilized qualitative research methods, such as interviews and focus groups, to obtain in-depth accounts of the nature of these challenges and coping strategies. When utilized to inform the design and implementation of preventive measures, these qualitative findings can help lead to studies examining the use of these preventive measures as contrasted with usual strategies. Furthermore, these qualitative findings have the potential to emphasize the positive, minimize the negative, and thus, minimize the risk of burnout. Examining the research pertaining to challenges and coping strategies in the HIV services field would provide more up-to-date information to AIDS-service organizations (ASOs), community-based organizations (CBOs), and hospitals.

The purpose of this study is to review systematically the challenges and coping strategies that qualitative researchers have observed in the HIV services field during the HAART era. We defined “challenges” as any situations, contexts, or events that could potentially contribute to inducing stress and resulting in burnout. We defined “coping strategies” as any strategy or mechanism that could potentially inhibit stress and resulting burnout. Summarized research recommendations to minimize the effects of challenges and to maximize the potential usage of coping strategies will be discussed. In our review of qualitative studies from the U.S. and Canada, we examined the following research questions:

Research Question 1: What challenges have HAART era qualitative research identified among helpers in the HIV services field?

Research Question 2: What coping strategies have HAART era qualitative research identified among helpers in the HIV services field?

Research Question 3: Based on research findings, what recommendations have HAART era qualitative research provided to ASOs, CBOs, and hospitals?

Methods

To assess the available literature base, the first author (ZK) searched for articles published in peer-reviewed journals and dissertations/theses published online from January 1, 1998 through February 29, 2012 in four online databases (MEDLINE, Social Work Abstracts, Web of Science–ISI, and PsycInfo). A search was also done on Google Scholar to ensure an exhaustive literature search. Although there is speculation as to when the HAART era began, we believe the start date of January 1, 1998 is a valid starting point for our data collection. Key events occurred prior to 1998, such as presentations at the 11^th International Conference on AIDS in 1996¹² and publications in The New England Journal of Medicine in 1997. These presentations and publications provided evidence of the benefits of HAART^13,14 and subsequent declines in AIDS and AIDS-related deaths.¹⁵ Our start date allows for sufficient time for their HAART-related findings to be integrated into the mainstream. Our date also allows for the research that had been conducted while HAART was first in use to have been published.

Search terms covered: HIV/AIDS (“HIV infection*” OR HIV OR AIDS); HIV services staff (doctor* OR “test provider*” OR staff OR physician* OR nurse* OR “social worker*” OR counselor* OR psychiatrist* OR “home health aide*” OR “home health work*” OR “health educator*” OR “prevention worker*” OR volunteer*); challenges/coping strategies (Psychology OR stress or challenge* OR coping OR experience* OR burnout OR “burn out” OR burden OR hardship); qualitative research (Qualitative OR focus group* OR interview*); and excluded locations not in the US or Canada (Africa OR Asia OR “South America” OR “Central America” OR “Mexico”). A total of 1162 articles were found. Duplicates (n=316) were removed, leaving 846 articles for inclusion criteria review.

We selected articles that satisfied the all five of the following inclusion criteria: (1) utilized qualitative methods (e.g., interviews, focus groups); (2) published on or after January 1, 1998; (3) utilized samples of individuals working/volunteering in the HIV services field, directly with clients (e.g., doctors/physicians, nurses, psychiatrists, home health aides/workers, health educators), or in supervisory roles; (4) occurred in the U.S. or Canada; and (5) contained information related to challenges and/or coping strategies. We limited research studies to those occurring in the U.S. and Canada because we believed that the work dynamics and resulting challenges and coping strategies were similar in these countries, but would differ from those in other regions.

Each article was reviewed by at least two of the first four authors (ZK, DG, KM, RL). Authors examined each article title and abstract for the inclusion criteria. If information regarding the inclusion criteria could not be found, the authors sought additional information from within the body of the article. An article was included in the systematic literature review when both authors agreed that it fulfilled all inclusion criteria. Discrepancies were resolved by discussion between the two authors. If there were differences of opinion that could not be resolved, additional authors were consulted.

After applying the inclusion criteria, we retained 26 articles for systematic review. At least two authors reviewed and coded each article. The first coder recorded all relevant information about the article and the second coder verified the information. If there were differences of opinion that could not be resolved, a third coder was consulted. Our coding sought information regarding:

- The methodology of the study, such as theoretical approach, sample type (random/nonrandom), and methods to increase validity and reliability of study findings

- Participant demographics

- Challenges and coping strategies

- Recommendations for researchers and individuals in the HIV services field

We utilized a team read-through during staff training to ensure that staff was acclimated to the coding process. We managed all data on an Excel spreadsheet, utilizing it to identify themes related to challenges, coping strategies, and recommendations. Discussion among the authors continued as article coding ensued. Themes were continuously refined until authors agreed upon a final collection of themes and subthemes. Counts for each challenge, coping mechanism, and recommendation theme and subtheme were tabulated. These themes were then verified by two external sources in the HIV services field for accuracy and relevance.

Results

Study populations and methodologies

The 26 articles that we included originate from 24 research studies. Two articles^16,17 originate from data collected by Sherman. Two articles^18,19 originated from data collected by Myers et al. Table 1 displays the participant demographics of the 24 studies.

Table 1.

Demographics of Included Studies (n=24)^a

Study	Sample (location)	Random sample?	Theoretical approach?	Response rate	% Male	% Non-white	Mean Age (years)	% LGBT
Chillag et al.³⁹	26 CBO staff members (US)	No	No	100%			22.3
Christensen et al.⁴⁴	25 ASO volunteers (South Carolina, US)	No	No	71%
Crook et al.²⁰	18 ASO volunteers (Ontario, Canada)	No	Yes		89%
Du Mont et al.³²	132 Sexual Assault/Domestic Violence Treatment Center health care providers (Ontario, Canada)	No	Yes	35%
Gerbert et al.³⁶	20 HIV specialists (San Francisco, US)	No	No	65%	50%	10%
Hatem et al.³⁴	10 patient-teachers (Boston, US)	No	No	87%	60%
Held & Brann³⁷	ASO volunteers (Appalachia area, US)	No	No
Hitt et al.⁴⁰	31 HIV-prevention counselors and 9 supervisors (Texas, US)	No	No
Kalichman et al.²⁹	499 members of Association of Nurses in AIDS Care (US)	Yes	Yes	35%	16%
Karasz et al.⁴³	16 medical center physicians (New York City, US)	No	No		75%
Kerr et al.²¹	42 HIV-test counselors (US)	No	Yes	98%	38%	48%
Koester et al.²⁶	61 PIs, co-PIs, project directors, and interventionists (US)	No	Yes
Konseko & Rintamaki⁴⁸	25 ASO care providers (US)	No	No		32%	8%	42.1	48%
Kukafka et al.⁴¹	19 HIV/AIDS clinic counselors (US)	No	No	100%
Marino²²	9 HIV+ Peer Educators (Bronx, NY)	No	Yes		44%	89%
Mullins³⁸	76 rural nurses (Virginia, US)	No	No	35%
Myers et al.^18,19	24 HIV-test providers (Canada)	No	No		42%
Myers et al.⁴⁵	18 public health administrators/medical directors/doctors (San Francisco, US)	No	No
Parrish²³	12 minority CBO founders/directors (US)	No	Yes
Roberts et al.²⁴	16 HIV-staff members (Los Angeles county, US)	No	Yes	100%
Robillard et al.²⁸	64 CBO staff working with jail/prison facilities (USA)	No	Yes	78%	41%	62%
Saleh et al.³⁵	21 African American CBO staff (California, USA)	No	No		62%	100%
Sebesta et al.⁴²	37 program directors, case managers, and contract managers (San Francisco, US)	No	No
Sherman^16,17	12 medical center nurses from an AIDS-dedicated unit (NYC, US)	No	Yes	80%	8%	50%	46.0	0%

26 articles comprise the 24 studies. There are two studies that each produced two articles.

ASO, AIDS service organization; CBO, community-based organization; PI, principal investigator.

A majority of studies sampled helpers with specific roles, such as nurses (17%, n=4), HIV test counselors (17%, n=4), volunteers (13%, n=3), peer educators (8%, n=2), directors (4%, n=1), and doctors (4%, n=1). The remaining 9 studies (38%) utilized samples of HIV services staff. The majority of studies originated from the U.S. (88%, n=21), with San Francisco (15%, n=3), and New York City (15%, n=3) housing the largest proportions of study samples.

Twelve studies (50%) reported response rates, with ranges of 35–100%. Twelve studies (50%) reported gender distributions, with the proportion of males ranging from 8% to 89%. Seven studies (29%) reported racial distributions, with the proportion of non-whites ranging from 8% to 100%. Few studies included information about participants' age (13%, n=3) and sexual orientation (8%, n=2).

Only one study (4%) utilized a random sample, with remaining studies utilizing convenience/purposive samples. Ten studies (42%) explicitly stated a theoretical approach, with five studies^20

–24 utilizing grounded theory,²⁵ and a sixth study²⁶ utilizing Framework Analysis.²⁷ In addition, two studies^28,29 used the methods set forth by Patton;³⁰ Sherman^16,17 used the methods set forth by Carini;³¹ and Du Mont, Macdonald, Myhr, and Loutfyl³² used the methods set forth by Graneheim and Lundman.³³

Together with theoretical frameworks and methods, researchers utilized additional methods to increase validity and reliability (Table 2). Studies included: multiple research staff coding interview/focus group transcripts (42%, n=10); team read-throughs (33%, n=8); multiple read-throughs of transcripts (42%, n=10); triangulation (33%, n=8); refining of the thematic codebook as coding progressed (33%, n=8); and data verification by an external source (29%, n=7).

Table 2.

Methods to Improve Validity and Reliability in Included Studies (n=24)^a

Study	Use of theory/ methods framework	Multiple coders	Team read-throughs	Multiple read-throughs	Data verified by external source	Continual refining of codebook	Triangulation
Chillag et al.³⁹		x			x	x	x
Christensen et al.⁴⁴						x
Crook et al.²⁰	x			x	x
Du Mont et al.³²	x	x		x
Gerbert et al.³⁶				x	x	x
Hatem et al.³⁴		x	x	x		x	x
Held & Brann³⁷					x
Hitt et al.⁴⁰		x	x				x
Kalichman et al.²⁹	x
Karasz et al.⁴³				x
Kerr et al.²¹	x			x		x
Koester et al.²⁶	x	x	x	x		x	x
Konseko & Rintamaki⁴⁸		x	x	x		x	x
Kukafka et al.⁴¹		x	x			x
Marino²²	x	x	x
Mullins³⁸			x	x
Myers et al.^18,19		x			x
Myers et al.⁴⁵
Parrish²³	x				x		x
Roberts et al.²⁴	x						x
Robillard et al.²⁸	x
Saleh et al.³⁵		x		x
Sebesta et al.⁴²			x
Sherman^16,17	x				x		x

26 articles comprise the 22 studies. There are two studies that each produced two articles.

Challenges

We found the challenges to occur on a range of levels with peers, organizations, the community, and funders. As a result, we found it best to categorize challenges by the levels of the ecological model (i.e., personal, interpersonal, organizational, community, public policy) (Table 3).

Table 3.

Themes and Subthemes for Challenges Experienced by HIV Services Helpers

Theme	Individual						Interpersonal							Organizational								Community		Public policy
Subtheme	1		2				1					2	3	1				2				1	2	1	2
Subsubtheme	a	b	a	b	c	d	a	b	c	d	e			a	b	c	d	a	b	c	d
Chillag et al.³⁹							x									x	x			x	x	x	x		x
Christensen et al.⁴⁴											x
Crook et al.²⁰																x		x
Du Mont et al.³²				x												x	x	x						x
Gerbert et al.³⁶		x		x			x		x	x	x				x			x						x
Hatem et al.³⁴	x										x		x			x						x
Held & Brann³⁷		x						x	x							x
Hitt et al.⁴⁰							x								x		x	x	x	x
Kalichman et al.²⁹			x			x	x		x		x	x		x		x	x	x
Karasz et al.⁴³								x	x	x	x						x
Kerr et al.²¹	x	x					x		x						x	x
Koester et al.²⁶														x	x					x
Konseko & Rintamaki⁴⁸
Kukafka et al.⁴¹							x		x						x	x		x
Marino²²									x		x
Mullins³⁸			x				x								x						x	x	x
Myers et al.^{18, 19}							x
Myers et al.⁴⁵															x
Parrish²³														x		x						x		x
Roberts et al.²⁴							x
Robillard et al.²⁸							x		x		x	x				x	x	x			x			x
Saleh et al.³⁵	x															x
Sebesta et al.⁴²							x	x									x		x	x	x			x
Sherman^16,17	x		x		x		x				x			x				x		x				x

PERSONAL

1. Dealing with emotions

a. Anger

b. Self-doubt/helplessness

2. Job-related

a. Fear of contagion

b. Uncertainty of future of HIV-services

c. Sights/smells

d. Ethical concerns related to care

INTERPERSONAL

1. Relationships with clients

a. Client circumstances make staff/client relationship difficult

b. Clients lack autonomy

c. Non-adherence to treatment and programming

d. Changing state of HIV affects client/staff relationship

e. Death of clients

2. Relationships with staff

3. Relationships with friends/family

ORGANIZATIONAL

1. Structural issues

a. Changes in infrastructure

b. Work constraints

c. Lack of resources/training

d. No superior support

2. Employee issues

a. Heavy workloads

b. Inability to recruit and match clients to programming

c. High turnover

d. Inability to hire

COMMUNITY

1. Mindset of community

2. State of community

PUBLIC POLICY

1. Funding issues

2. Political environment

Personal

Nine studies (38%) identified challenges that occurred on the individual level. Six studies (25%) noted that helpers struggled with their emotions. Helpers' anger (17%, n=4) was directed towards those responsible for infecting their patients,¹⁷ and for some helpers, those who infected them.³⁴ In some cases, anger originated from a personal belief that clients were knowingly putting their partners at risk for HIV infection, resulting in personal biases against certain populations, such as African-American men who have sex with men and women.³⁵ Helpers also expressed self-doubt and helplessness as to whether their work was effective in preventing the onset of new infections (13%, n=3).^21,36,37 HIV test counselors in particular felt that they needed to control their emotions in order to ensure they could provide support to their clients.²¹

Five studies (21%) noted job-related individual challenges, mostly due to the fear of contagion (13%, n=3).^16,29,38 The three remaining personal challenge subthemes were: uncertainty of the future of HIV services (8%, n=2);^32,36 enduring the sights and smells related to caring for sick HIV-positive patients (e.g., “copious diarrhea” or draining wounds) (4%, n=1);¹⁶ and ethical concerns related to care (4%, n=1).²⁹

Interpersonal

Seventeen studies (71%) identified challenges that occurred on the interpersonal level. All these studies (71%) discussed client relationships. Circumstances related to the client that hindered the staff/client relationship were most discussed (50%, n=12), such as substance abuse,^{17,24,28,29,39} mental health issues,^28,29 pregnancy,²⁹ and sexual assault.²¹ As a result, clients had multiple needs aside from HIV infection. However, helpers believed that they lacked appropriate training regarding how to attend to HIV-related issues in the context of these other issues.²⁸ Helpers also struggled working with illiterate individuals and non-English speaking clients.^28,40,41 Clients also did not have much concern about HIV,^21,41,42 believing that their risk for infection was not high.^38,39 In a study with rural nurses,³⁸ nurses noted that the prevalence of HIV may be low in rural areas, and a lack of concern may be due to concern for other infectious diseases and viruses. Despite their beliefs towards HIV/AIDS, patient reactions to HIV test results were still highly emotional, causing helpers to struggle with giving HIV test results and responding accordingly (e.g., not becoming overly emotionally invested to where helper is unable to maintain professionalism).^19,21,29 Helpers also reported clients as being uncooperative, impolite, rude, and even threatening;^17,24,29 in some cases, clients demanded services without risk-reduction counseling.^24,40 At the same time, the transient nature of clients made it difficult to maintain continual contact.³⁹ As a result, helpers noted not being able to develop a relationship with patients,^16,28,41 and suffered compassion burnout.³⁶

Three studies (13%) noted that client relationships were further impeded by the clients' inability to seek or obtain autonomy in their management of HIV.^37,42,43 Helpers felt compelled to help and sympathize with their clients; however, helpers lacked the necessary time and resources (i.e., staff availability, coordination of care, programming materials) or believed helping would undermine clients' autonomy. As a result, they struggled to know where to set limits or when to say “no.” Eight studies (33%) also discussed nonadherence issues related to treatment,^{28,29,36,37,43} minimizing high-risk behaviors,^21,41 and seeking support.²² Helpers also noted that as HAART therapy was introduced, the doctor/patient relationship had changed (8%, n=2). Doctors struggled to make the right decisions for drug combinations and treatments while managing resultant side effects.³⁶ However, some doctors believed that their patients provided the best insight into effective treatment.^36,43

Despite the advent of HAART, helpers still dealt with the death of clients (33%, n=8). Studies discussed the emotional stress of watching clients grow weak and die slowly.^{16,17,22,28,29,36,43} Two samples^34,44 of HIV-positive individuals volunteering as peer-support providers noted the grief faced by losing their care partners and fellow volunteers. Helpers also expressed challenge as they watched the families of their clients react to their clients growing weak and dying.^16,29 At the same time, it was difficult to witness family members act nonsupportively due to religious and personal beliefs.²⁹

Additional interpersonal challenges were also discussed. Two studies (8%) mentioned staff conflicts.^28,29 One study (5%) noted the loss of personal relationships in HIV-positive peer educators due to disclosing their HIV status to friends and family.³⁴

Organizational

A large number of studies discussed organizational challenges (79%, n=19), with all studies noting structural issues (79%, n=19). Agency infrastructure constantly changed^23,26 (17%, n=4), and in other cases, organizations were downsized²⁹ or completely dismantled.¹⁶ Organizations also failed to provide adequate work settings (29%, n=7), in terms of adequate time,^{26,36,40,41,45} space,^40,41 and privacy^21,38,40 for client interactions. Helpers also noted that organizations lacked resources (46%, n=11) such as education pamphlets and referral lists that were up-to-date^20,39,41 or appropriate for their clients.^{20,21,23,28,35} In some instances, helpers became more focused on adhering to protocol, which interfered with building client rapport.⁴⁰ Protocols also did not apply to all client situations.^28,32,40 Inadequate work settings and resources left helpers unprepared for certain situations, such as working with clients that were pregnant, victims of rape/sexual assault,^23,29,37 or imprisoned.²⁸ Helpers also believed that they lacked support from supervisors and those who funded programming^{28,29,32,39,40,42,43} (29%, n=7). There were concerns of incorrect implementation of treatment and interventions because supervisors failed to provide instruction and funders failed to provide feedback. Studies also noted that certain staff refused to implement programming; for example, some medical providers working with staff refused to provide post-exposure prophylaxis to patients because they believed its side effects were more harmful than the risk of HIV infection.³²

Employee issues were also noted (50%, n=12), particularly related to heavy workloads^{17,20,28,29,32,36,40,41} (33%, n=8) and the inability to recruit appropriate clients for funded programming^40,42 (8%, n=2). Low morale¹⁶ and high turnover in the workforce^26,39,40,42 added to challenge (21%, n=5). Organizations struggled to hire paid staff (17%, n=4) that reflected the population of interest.^28,38,39 One study explained that disinterest in the HIV services field was due to the low salary levels offered in comparison to the academic credentials that were necessary to meet grant requirements.⁴²

Community

Four studies (17%) reported community-level challenges. Challenge originated from the mindset of the community (17%, n=4), indicating shame about sexuality,³⁹ distrust of the social service providers,³⁹ a lack of community support for programming,²³ and stigma/bias related to HIV/AIDS, homophobia, race, and sex.^34,38,39 Studies also discussed the state of the community (8%, n=2), which faced high levels of poverty³⁹ and lacked sufficient HIV education.³⁸

Public policy

Seven studies (29%) noted challenges related to public policy. Helpers focused on funding issues (29%, n=7), especially the lack of funding to properly implement programming,^{16,28,32,40,42} battling insurance companies,³⁶ and funders setting too high expectations for programming,⁴² which led to programming adhering more to funder demands than actual community needs.²³ In addition, one study (4%) noted the political environment had generated support for policies that inhibited prevention and care for those at high risk for HIV infection (e.g., federal ban on needle exchange funding).³⁹

Coping strategies

Coping strategies fell into two categories consistent with previous research findings^46,47 (Table 4). Problem-focused strategies, such as relying upon protocol, managed and/or altered the circumstances related to one's work in HIV services. Emotion-focused strategies, such as social support and escape, controlled the emotional responses related to working in the HIV services field.

Table 4.

Themes and Subthemes for Coping Strategies Utilized by HIV Services Helpers

Theme	Problem-focused				Emotional-focused
Subtheme	1	2			1	2
Subsubtheme		a	b	c		a	b
Chillag et al.³⁹		x
Christensen et al.⁴⁴	x	x			x
Crook et al.²⁰		x			x
Du Mont et al.³²
Gerbert et al.³⁶		x		x	x
Hatem et al.³⁴
Held and Brann³⁷		x			x
Hitt et al.⁴⁰			x
Kalichman et al.²⁹	x				x	x	x
Karasz et al.⁴³	x				x	x
Kerr et al.²¹	x			x	x	x	x
Koester et al.²⁶
Konseko and Rintamaki⁴⁸							x
Kukafka et al.⁴¹
Marino²²					x	x
Mullins³⁸
Myers et al.^{18, 19}		x	x		x	x	x
Myers et al.⁴⁵
Parrish²³		x		x
Roberts et al.²⁴			x		x	x
Robillard et al.²⁸
Saleh et al.³⁵	x				x
Sebesta et al.⁴²
Sherman^16,17			x		x	x	x

PROBLEM-FOCUSED

1. Planning strategies

2. Resources

a. Support

b. Materials

c. Experience

EMOTIONAL-FOCUSED

1. Emotional support

2. Take care of self

a. Role clarity/balance

b. Escape

Problem-focused strategies

Studies found two main themes in problem-focused coping strategies (58%, n=14). First, helpers utilized planning strategies to better manage work circumstances (21%, n=5), such as rational problem solving,²⁹ getting to know clients in order to better understand their needs,⁴³ being honest about the types of services available and unavailable,³⁵ and using preparatory strategies to better prepare for clients and their possible reactions.^21,44 Second, helpers used available resources to help clarify, support, and accomplish programming goals (46%, n=11). Instructional support (29%, n=7) was obtained from other agencies,³⁹ co-workers,²⁰ supervisor feedback,³⁹ and training/education sessions that taught additional skills for implementing programming.^{18,23,36,37,44} Resources were also available in material form (17%, n=4), but were only helpful when they were of high quality and helped to manage work responsibilities related to clients.^16,19,24,40 Last, helpers found resources within their own personal experience (13%, n=3) prepared them for work responsibilities.^21,23,36 More experience equated to more confidence.

Emotional-focused strategies

Helpers also utilized emotional-focused coping strategies to deal with challenges related to working in HIV services (54%, n=13). Helpers relied upon emotional support (50%, n=12) from fellow helpers,^{16,19,21,22,24,29,35
–37,43,44} supervisors,^20,29 and family/friends.^21,44 One study²¹ noted that many helpers chose not to seek emotional support from family/friends due to family/friends not understanding the nature of their work. Helpers also relied upon religious/faith support to help overcome grief and remind them that their work let them to put their religious beliefs in action.^16,29,44

Helpers also took care of themselves (33%, n=8). First, helpers found role clarity (29%, n=7) by recognizing that their role is one facet of a larger prevention and care system.^{16,21,22,29,43} Thus, helpers found meaning in their roles,^16,22,24 and successfully maintained professional boundaries.^17,18 When necessary, helpers also sought escape from their roles (21%, n=5) through humor,^19,48 engaging in distracting activities at and outside of work (e.g., smoke breaks, writing in a journal, hobbies),^16,19,21 and wishful thinking.²⁹ Some studies, however, warned of the dangers of escape, which may lead to inappropriate usages of avoidance,²⁹ dark humor,¹⁹ and alcohol.¹⁹

Recommendations

Recommendations fell into three general themes: (1) Support; (2) Capacity-building; and (3) Structural changes (Table 5).

Table 5.

Themes and Subthemes for Recommendations for AIDS Services Organizations and Community-Based Organizations

	Support			Capacity building		Structural changes
Theme Subtheme	1	2	3	1	2	1	2	3
Chillag et al.³⁹			x	x	x
Christensen et al.⁴⁴				x
Crook et al.²⁰	x			x	x	x
Du Mont et al.³²	x
Gerbert et al.³⁶	x			x	x
Hatem et al.³⁴	x	x
Held and Brann³⁷		x		x
Hitt et al.⁴⁰						x
Kalichman et al.²⁹	x	x	x					x
Karasz et al.⁴³
Kerr et al.²¹	x	x		x
Koester et al.²⁶
Konseko and Rintamaki⁴⁸		x
Kukafka et al.⁴¹	x
Marino²²
Mullins³⁸				x	x
Myers et al.^18,19	x
Myers et al.⁴⁵	x
Parrish²³			x
Roberts et al.²⁴	x	x		x
Robillard et al.²⁸		x			x		x
Saleh et al.³⁵				x
Sebesta et al.⁴²	x		x	x			x
Sherman^16,17	x	x					x

SUPPORT

1. Work support

2. Emotional support

3. Funder support

CAPACITY BUILDING

1. Trainings

2. Networking

STRUCTURAL CHANGES

1. More staff input

2. More appropriate workloads

3. Specific programs to reduce stress

Support

Seventeen studies (71%) recommended support to assist helpers. Work support (50%, n=12) should be provided for employment/personnel issues.²⁹ Organizations should encourage collaboration among employees to augment patient care,³⁶ protect helpers from occupational exposures,¹⁶ emphasize constant supervisor feedback,²⁰ and provide adequate time to complete necessary paperwork.⁴² New programming should be introduced in a manner so that staff is not overwhelmed with their new work responsibilities.⁴⁵ Reference guides should clearly indicate programming protocols and guidelines,^21,24,32,42 utilize attractive diagrams that engage helpers,⁴¹ and offer preparatory strategies that help helpers anticipate client reactions.³⁴. However, helpers must realize that client reactions are not uniform per situation, and should be consequently prepared with a range of communication strategies needed to effectively interact and communicate with clients.^19,21 One study³² also noted the use of an expert group to continually review programming, recommend changes to aid implementation, and advocate sustainability of successful programming.

Eight articles (33%) noted that emotional support should be available. Formal and informal support groups^{16,21,24,28,29,37} and regularly-scheduled debriefing sessions^21,34 let helpers openly communicate and discuss coping strategies. One study⁴⁸ recommended incorporating humor into debriefing sessions, but warned readers to avoid maladaptive uses of humor. Four articles (17%) also specifically mentioned that funders needed to provide support and technical assistance in starting, implementing, and evaluating programming.^23,29,39,42

Capacity building

Eleven studies (46%) emphasized the need for more staff development. Instructional sessions (42%, n=10) were recommended, particularly those that clarify HIV services helpers' roles,^21,36,37,39 and offer continuing training and education.^{24,35,38,42,44} Students seeking employment in the HIV services field should also receive relevant education and practical experience in working with at-risk populations.³⁸ Helpers should also be provided with specialized training that attends to their working personalities. For example, some helpers may benefit from increased responsibility and more meaningful work, while others may benefit from more collaboration on programming.²⁰

Increased networking was also recommended (21%, n=5). Organizations can benefit from collaborating with service providers to expand their reach to clients that live in rural areas^28,38 and utilize other organizations to address the lack of resources they may have.^36,39 Communication should also be increased among local, state, and national organizations.²⁸ Internally, organizational communication can help increase role clarity.²⁰

Structural changes

Recommendations related to structural changes varied (25%, n=6). Articles recommended that helpers have more active participation in the development and assessment of programming (8%, n=2) in order to better understand programming goals and evaluation criteria related to job performance.^20,40 Staff workloads can also be modified (13%, n=3), through limiting patient-to-staff ratios¹⁶ and ensuring that clients are being enrolled into the appropriate programming with the appropriate staff.⁴² For example, the hiring of bilingual staff would help organizations better work with non-English speaking clients.²⁸ If possible, better pay commensurate with helpers' training and skill, and other rewards may serve as incentives.⁴² Last, one study (4%) emphasized that stress management interventions may help reduce potential burnout. However, a universal program may not be adequate; matching specific coping strategies to specific challenges is essential.²⁹

Discussion

Silverman's¹¹ review of the psychosocial impact of working in the HIV services field was mostly composed of survey research with samples of health providers such as nurses and doctors. In his conclusion, Silverman¹¹ called for a more in-depth examination of factors related to HIV caregivers such as physicians, nurses, and social workers. Our systematic literature review is the first review in two decades to examine the challenges faced by helpers in the HIV services field, including volunteers and peer-educators; in essence, our review systematically examines how well the HIV services field has responded to Silverman's¹¹ call.

Our review focused on 26 studies that utilized qualitative research methods to highlight the complex system of challenges and coping strategies identified by helpers over numerous studies. These 26 studies were composed of diverse samples that included medical staff, staff at ASOs and CBOs, and volunteers hailing from the U.S. and Canada. Our findings, coupled with Silverman's¹¹ review will provide more up-to-date information to ASOs, CBOs, and hospitals, and generate additional recommendations to help advance the HIV services field.

Our findings suggest a decrease in job-related personal challenges detected by previous research,¹¹ such as lacking HIV-related knowledge, holding negative attitudes towards homosexuality, and lacking faith in established safety guidelines to prevent transmission. Such a finding is promising as these challenges were predominately based upon myths and misconceptions related to HIV and HIV-positive individuals. The decrease in these challenges reveals that helpers' general knowledge of HIV has substantially increased. Also, many helpers noted challenges related to not knowing how to discuss HIV-related issues in the context of pregnancy or sexual assault, which may suggest that prevention and care efforts are reaching specific populations. However, helpers acknowledged that the community still lacks HIV education and houses HIV-related stigma; thus, continued community education and awareness efforts are necessary. In addition, research findings suggested that helpers may hold prejudices against certain clients. For example, a faction of female African American CBO staff in one study³⁵ portrayed men who have sex with men and women in a negative light. As a result, organizations should provide helpers with continual training on their client populations in order to better provide a nonjudgmental environment for clients.³⁵

On the other hand, findings suggest that many challenges from the pre-HAART era are still prevalent today in the HIV services field. Helpers continued to deal with the emotional drain of repeated exposures to death and dying, despite the decrease in the annual frequency of AIDS-related deaths. This challenge is now coupled with clients' demands and sometimes rude and inappropriate behavior. Although helpers may have education regarding handling client behavior, their perceptions and attitudes towards their clients may vary, particularly race by gender.^49,50 In addition, helpers struggled to find role clarity and lacked sufficient training, leading them to feel helpless and ineffective in being unable to provide adequate resources to clients. Helpers also felt a lack of gratitude from clients and their communities for their work as well. Many of the challenges parallel the three dimensions that Maslach and Jackson⁵¹ hypothesize are associated with burnout: emotional exhaustion, depersonalization, and a lack of feeling personal accomplishment. Silverman¹¹ emphasized the need to address the stressors and needs of HIV services staff, asserting that ignoring them would result in a shortage of well-trained staff. Although strides have been made to provide better services to assist helpers in managing work-related challenges, our study suggests that the HIV services field still encounters high levels of turnover and a lack of insufficient training.

At the same time, our study found a mixture of emotion-focused and problem-focused coping strategies. Emotion-focused strategies, such as social support and taking care of one's self, controlled the emotional responses related to working in the HIV services field. Problem-focused strategies, such as planning strategies and utilizing resources, managed and/or altered the circumstances related to one's work in the HIV services field. These coping strategies generated recommendations for work and emotional support, increased capacity building through trainings and networking, and structural changes that aimed to place more emphasis on helper needs. We support these recommendations as strategies to minimize stress, maximize coping, and reduce the possibility of burnout.

The research staff in the studies included in our review aimed to establish validity and reliability in their findings through methods such as multiple staff coding transcripts, codebook refinements, and data verification. Nevertheless, it is important to note that a recent examination of criteria to assess qualitative methodologies states that “applying the same standards across all qualitative research is inappropriate”.⁵² Rather, focus should be placed on “helping reviewers understand how an unfamiliar qualitative approach should be executed and standards for evaluating quality.” The authors further note that researchers may be unable to value certain qualitative methods due to being “entrenched in the dogma of their own approach.” As a result, our study's conclusions should not be perceived as definitive. Instead, our conclusions are suggestions that we hope will contribute to the development and implementation of strategies that help those in the HIV services field manage their work-related challenges.

Although our review offers a compendium of challenges and coping strategies from the HAART-era, it has several limitations. First, our rigorous search process included four academic databases, as well as an additional review of the literature on Google Scholar; yet, it is possible that articles may have been missed. Next, publication bias may have occurred in which studies with more dramatic and/or unique findings are more likely to be published and thus, included in a systematic literature review such as ours. Also, included studies comprise a broad diversity of HIV services environments and helper demographics. As a result, it may be difficult to make generalizations about our findings, and apply them to particular contexts within an HIV services environment. In addition, our review did not examine challenges and coping strategies among specific groups (e.g., professional staff vs. volunteers; full-time vs. part-time). However, we believe that many of these challenges and coping strategies are pertinent to all individuals working in the HIV services field. Last, the authors (ZK, KM, DG, RL) responsible for the searching, selection, and coding of included articles have been involved in HIV/AIDS prevention work during their professional and academic tenures. It is possible that reviewer bias occurred, although we attempted to curb our personal biases through the use of team read-throughs, multiple coders, and data verification by external sources.

The HIV services field currently lacks interventions to prevent burnout.^1,21,53 As HAART continues to increase the survivorship of HIV-positive individuals, the HIV services field will continue to face heavier workloads. Organizations may find management of programming to be further challenging due to continued uncertainty of funding, as well as the changing structure in how funding is distributed and utilized in HIV prevention and care. Future research should particularly focus on the connectivity between resources, which will help build role clarity. By building and reassuring helpers that they are a component of a large network of prevention and care, helpers will find support in coping with their challenges.

Moreover, as discussions emerge regarding the usage of self-administered pre-exposure HIV prophylaxis (PrEP) both regularly, and “on-demand” (i.e., taking a dose of HAART hours before a possible sexual exposure and a second dose afterwards),⁵⁴ new challenges will likewise emerge. For example, PrEP may unintentionally cause an increased prevalence of risk compensation, in which individuals would engage in riskier behaviors (e.g., decreased condom usage) because of a belief that PrEP would provide sufficient protection against HIV.^54
–56 As a result, future research must continue to identify challenges that arise as novel prevention strategies, such as PrEP, and budget constraints are introduced, while creating, implementing, and evaluating interventions to manage current challenges and reduce the risk of burnout.

Footnotes

Acknowledgments

The authors would like to thank Bill Tiedemann of the The Minnesota AIDS Project, and Iris Velasco of the Columbus Urban League for their time and thoughtfulness in discussing issues that helped develop the content of this article. The authors would also like to thank James R. Carter for his assistance in data analysis.

Author Disclosure Statement

No competing financial interests exist.

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