Consultation Implications in Context

ORIGINAL PAPER

Older Adolescents’ Self-Determined Motivations to Disclose Their HIV Status

Ann Gillard • Mark F. Roark

Published online: 29 June 2012

� Springer Science+Business Media, LLC 2012

Abstract Disclosure of HIV status is an important topic

for youth living with HIV/AIDS, yet theoretical frame-

works for understanding HIV disclosure motivations have

been poorly applied. Self-determination theory (SDT)

proposes that people are at optimal functioning when they

are engaging in activities that are interesting and enliven-

ing. This study utilized SDT to understand young adults’

motivations to disclose their HIV status. Interviews and

observations were conducted with nine youth aged 17–19

and two adult staff. Results indicate that SDT is useful for

understanding types of motivation (i.e., amotivation, con-

trolled, and autonomous motivation) to disclose. Amoti-

vation was the most common type of motivation, and came

from two recursive sources: fear of stigma and previous

experiences of others disclosing without their consent.

Controlled motivation to disclose occurred when partici-

pants were motivated to disclose because of reasons related

to other people, rather than internal or personal reasons,

and included the reasons of wanting to gain a closer rela-

tionship, reciprocate a shared secret, for psychological or

emotional relief, and for attention. Autonomous motivation

included two themes: the life perspective that ‘‘Having

HIV is just part of who I am,’’ and valuing educating others

because education was perceived as important and

beneficial to others. This study extends SDT into the

domain of HIV disclosure in older adolescents. People

providing guidance and support to older adolescents with

HIV/AIDS can use SDT to understand different motiva-

tions to disclose.

Keywords Youth with HIV/AIDS � Self-determination theory � Motivation � HIV disclosure � Older adolescents

Introduction

Disclosing one’s positive HIV status is typically difficult

and fraught with concern and fear regarding the outcomes

of the disclosure, which has some bearing on the motiva-

tion to disclose. While certain psychological and social

assets can buffer or ameliorate the worry, disclosure

remains a salient issue for people living with HIV/AIDS.

Adolescents living with HIV/AIDS are especially vulner-

able to the omnipresent concern about disclosure due to

changes related to their ongoing social, psychological, and

cognitive development. Over the last 15 years, advances in

biological and behavioral treatments of HIV infection have

led to longer life spans, improved quality of life, and fewer

psychiatric problems for youth with HIV (Donenberg

2005). Still, disclosure remains a topic of major concern in

adolescents’ lives (Hosek et al. 2000; Wiener and Battles

2006) and the people who support them.

HIV Disclosure

HIV disclosure has been examined in a number of studies,

and some of these studies included influences on motiva-

tions to disclose. In a concept analysis, HIV disclosure was

found to be characterized by the attributes of: experiencing

an event, communicating something, timing, contextual

environment, protecting someone, relationship status and

improving something or being therapeutic (Eustace and

A. Gillard (&) Social Sciences Department, Springfield College,

263 Alden Street, Springfield, MA 01109, USA

e-mail: [email protected]

M. F. Roark

Department of Health, Physical Education, and Recreation, Utah

State University, 7000 Old Main Hill, Logan, UT 84322, USA

123

J Child Fam Stud (2013) 22:672–683

DOI 10.1007/s10826-012-9620-2

Ilagan 2010). Eustace and Ilagan (2010) also found that the

process of HIV disclosure contained antecedents and con-

sequences. Antecedents included disease acceptance, desire

to protect others and gain support, and individual, familial,

community, and social factors. Consequences could be

positive or negative regarding family, sexual partners,

friends, and community. In a qualitative study of South

African adolescents with HIV (Petersen et al. 2010), family

and peer support was an important factor in participants’

coping with their HIV status. Petersen et al. also found that

although HIV disclosure to schools by caregivers generally

resulted in greater academic support for the adolescents,

disclosure through gossip and rumor had the potential to

result in stigma and discrimination.

Without social support, youth with HIV can experience

feelings of social isolation, anxiety, and severe loneliness

(Travers and Paoletti 1999). In a meta-analysis of 21 studies

with 4,104 participants conducted by Smith et al. (2008), the

relationship between social support and disclosure across the

studies was significant but small. Smith et al. (2008) con-

cluded that when people living with HIV felt that HIV carried

a greater stigma, they reported less social support, and this

relationship was moderate. Greater HIV stigma also corre-

sponded to fewer disclosures of one’s HIV status. Although

this relationship was small, it was stable between studies.

Stigma is a major constraint to HIV disclosure.

Other factors influencing HIV disclosure have been

examined. In a qualitative study on why 29 adolescents

aged 12–20 disclosed their status, Michaud et al. (2009)

found no associations between the participants’ gender,

age, nationality, and family composition, and the extent

and target of disclosure. Michaud et al. also found that

younger adolescents’ disclosure was linked to that of the

parents, while older adolescents tended to independently

decide how and to whom to disclose. Decisions about

disclosure linked mostly to adolescents’ own representation

and family situation, and not to their level of maturity.

Michaud et al. (2009) found that there were two primary

types of disclosure: passive and active. Passive disclosure

related to situations (especially for younger adolescents)

when parents or caregivers handled the disclosure them-

selves or advised the adolescents how to disclose (such as

to teachers). Active disclosure related to adolescents

deciding to reveal their HIV status directly, such as to

friends or sexual partners. Understanding factors that

facilitate or inhibit adolescents’ self-determined motivation

to disclose is crucial for supporting the work of people who

serve youth with HIV/AIDS.

Self-Determination Theory

One theory that can be utilized to understand youths’

motivations to disclose their status to others is Self-

Determination Theory (Deci and Ryan 1985; Deci and

Ryan 2000). Self-determination theory (SDT) examines the

psychological processes that occur within the social con-

text and how these processes influence one’s reasons or

motivation to act or behave. In a HIV disclosure context,

we propose that self-determination represents motivation to

disclose that exists along a continuum varying along the

lines of motivation that more or less comes from the self,

promotes a sense of an internal locus of control, and is

regulated based on personal importance, conscious valuing,

and inherent satisfaction.

Six dimensions of motivation exist along the SDT

continuum, as seen in Fig. 1. Several scholars have

grouped the six types of motivation into three categories

for ease and simplicity in examining SDT-related concepts

(e.g., Boiche et al. 2008; Fortier et al. 2009; Gegenfurtner

et al. 2009; Ntoumanis and Standage 2009). The three

categories are amotivation, controlled motivation, and

autonomous motivation. Amotivation is a state in which

people do not act, act without intent, or lack the intention to

act (Pelletier et al. 2001) because the related behavior or

outcome is not valued. In the context of HIV disclosure,

amotivation reflects a lack of purpose or plan to disclose

status for any reason. Controlled motivation consists of

external and introjected motivation, and occurs when one

does something for an instrumental or non-internal pur-

pose. In the context of HIV disclosure, controlled moti-

vation reflects disclosing with approval-based pressure

with the purpose of gaining something from outside the

self, such as increased relationship status. Autonomous

motivation consists of identified, integrated, and intrinsic

motivation, and occurs when one does something because

the activity is inherently satisfying, enjoyable, and in line

with one’s value system. In the context of HIV disclosure,

autonomous motivation reflects disclosing because having

HIV is part of oneself and disclosure reflects the value and

goal of helping others. Autonomous and controlled moti-

vation types are not proposed to be mutually exclusive, but

are two independent types of orientations or constructs

(Boiche et al. 2008). In this study, autonomous motivation

reflects planning to disclose for purposes related to per-

sonal identity and values, and controlled motivation reflects

planning to disclose because disclosure would be expected

within the context of the relationship, not because disclo-

sure is valued for its own sake. The third type of motiva-

tion—amotivation—reflects lack of interest in or planning

to disclose.

Types of motivation have consequences for action. As

Ryan and Deci (2000, p. 69) explain, ‘‘Motivation pro-

duces.’’ In this study, the product of motivation is HIV dis-

closure (which could have positive or negative outcomes). In

the context of HIV disclosure, autonomous motivation pro-

duces the intent to disclose for the sake of disclosure,

J Child Fam Stud (2013) 22:672–683 673

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controlled motivation produces the intent to disclose for the

sake of relationship status, and amotivation produces a lack

of disclosure. Regulatory processes (i.e., how outcomes are

pursued; Deci and Ryan 2000) for amotivation include the

experiences of feeling non-intentional, non-valuing,

incompetence, and a lack of control. Controlled regulatory

processes include the experiences of feeling compliance,

mostly external rewards and punishments, self-control, and

ego-involvement. Autonomous regulatory processes include

the experiences of feeling personal importance, conscious

valuing, congruence, awareness, synthesis with the self,

interest, enjoyment, and inherent satisfaction.

A wealth of research has demonstrated that more auton-

omous motivation is linked to better outcomes in a variety of

life domains (e.g., Boiche et al. 2008; Ntoumanis and Stan-

dage 2009; Smits et al. 2010; Soenens and Vansteenkiste

2005). SDT has been applied in a number of contexts such as

youth recreation (Baldwin and Caldwell 2003), sports (Spray

et al. 2006), education (Gegenfurtner et al. 2009), summer

camp (Roark et al. 2010), psychopathology (Niemiec et al.

2006), and work (Gagne and Deci 2005). However, SDT-

based studies on motivation have not been applied in the area

of HIV-status disclosure for youth. Applying SDT to HIV

disclosure for adolescents can provide a framework for

understanding this phenomenon.

Self-Determination Theory and HIV Disclosure

Individuals who regulate their behavior autonomously

choose to do so because of the personal importance of the

behavior for their health (Williams et al. 1998). Uysal et al.

(2010) conducted a SDT-based study on self-concealment

in a sample of mostly female college students. Self-con-

cealment was defined as the ‘‘tendency to keep distressing

personal information secret’’ (Uysal et al. 2010, p. 187),

and had a direct negative association with well-being.

Additionally, the researchers found that the association

between self-concealment and well-being were valid regard-

less of personality differences. However, the connection

between Uysal et al.’s study and the present study is ten-

uous because Uysal et al.’s sample included mostly female

college students and included measures about concealing

or sharing general personal information. Disclosure of HIV

status in particular is arguably more fraught than an ori-

entation to share or conceal general problems in one’s life.

While other SDT-based research has addressed the topics

of HIV medication adherence (Kennedy et al. 2004; Lynam

et al. 2009) and distress and well-being of gay men with

HIV (Igreja et al. 2000), to our knowledge, none have

addressed HIV disclosure in older adolescents.

Accordingly, this study aimed to utilize SDT to under-

stand older adolescents’ motivations to disclose their HIV

status, using qualitative methods (Patton 2002; Yin 2003).

This study was grounded in previous research on the

developmental outcomes of summer camp participation

sponsored by an AIDS foundation in a major southern city

during 2007 and 2008 (Gillard et al. 2010, 2011). Although

not a focus of the previous research, the theme of HIV

disclosure emerged from youth participant data as an area

in need of further investigation. Qualitative approaches to

SDT (i.e., Dawes and Larson 2011; Fortier and Farrell

2009; Oliver et al. 2008; Perlman and Goc Karp 2010) have

been much less widely used than quantitative approaches,

and qualitative approaches were appropriate in this study

because of the focus on understanding motivations for HIV

disclosure in older adolescents.

Method

Procedures and Participants

The Springfield College Institutional Review Board

approved the study, and the AIDS foundation management

staff provided permission to conduct this research with

program participants. Data were collected at a program

operated by the AIDS foundation that was held in June

Intrinsic MotivationExtrinsic MotivationAmotivation

Intrinsic Regulation

External Regulation

Introjected Regulation

Identified Regulation

Integrated Regulation

Non- Regulation

Most Self-Determined

Least Self-Determined

Fig. 1 The types of motivation and regulation within self-determination theory, along with their placement along the continuum of relative self- determination (Deci and Ryan 2008a)

674 J Child Fam Stud (2013) 22:672–683

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2010 and served 41 young adults aged 16–19 who were

selected through consultation with their caregivers and

health care providers and who voluntarily chose to attend.

Participant observations and semi-structured one-on-one

interviews with nine youth participants aged 17–19, and

interviews with two adult leaders were used to gather data.

The first author was a mentor in the program, which

entailed supervising participants throughout daily activi-

ties, driving participants to activities, and engaging in

activities such as discussions and educational and motiva-

tional workshops.

Prior to the first day of the program, the AIDS founda-

tion sent consent forms to parents and caregivers, and

collected signed forms upon participant arrival. On the first

night of the program, the first author explained the purpose

of the study to the group and that she would be approaching

several participants throughout the week to inquire about

their potential participation in interviews. The program

director and first author consulted about which participants

to approach for interviews to ensure a representative

sample of a range of attitudes about disclosure, and to

ensure that only those participants under age 18 who had

parental consent to participate would be approached. The

attitudes ranged from non-disclosed (except to health care

providers) to public disclosure. Throughout the program,

the first author approached individuals for interviews, and

those under age 18 provided assent if they had consent

forms signed by their parents or caregivers, or signed

consent forms if they were 18 or older. Nine participants

agreed to participate and none refused.

Semi-structured interviews lasted 10–60 min each.

Participants who were primarily amotivated to disclose

their HIV status gave shorter interviews, and participants

who had more of a range of motivations to disclose pro-

vided longer interviews. Interviews were typically con-

ducted in a quiet place in sight of, but out of earshot of

other participants. Examples of interview questions inclu-

ded: ‘‘Approximately how many people know about your

HIV status? How did they find out? What were their

reactions? What influenced your decisions to talk to people

about your status? What are your opinions about disclosing

your status in public, such as speaking in front of a group,

writing an article, or other ways?’’

See Table 1 for a summary of interview participants,

their demographic information, and their primary motiva-

tion types. The demographic and disclosure profiles of the

interview participants reflected those of the overall pro-

gram. Of the interview participants, three did not willingly

disclose their status to people outside of the program, three

disclosed to close friends and family, two disclosed only to

close family, and one disclosed frequently and publicly.

Participant observations centered on topics immediately

or tangentially connected to disclosure, such as youth-led

discussion workshops about disclosure held in meeting

rooms at the residence hall where the participants stayed

throughout the program, and the group’s visit to a city

council meeting where the AIDS foundation (but not

individual participants) was publicly recognized by the

council. The first author also recorded observations of

unplanned and unexpected situations regarding disclosure,

such as when the group attended a banquet at a restaurant

with members of the public in attendance, and one par-

ticipant became distraught because she believed that a

guest speaker identified members of the group as having

HIV. The purpose of the participant observations was to

triangulate the data and reduce the likelihood of misinter-

pretation, clarify meaning, and bring credibility to the

findings (Patton 2002). Participant observation data were

compared to interview data to verify results.

Data Analysis

Data were axially and selectively coded, and categories

were generated that related to the SDT concepts of amo-

tivation, controlled motivation, and autonomous motiva-

tion. Indicators were theoretically sampled that represented

Table 1 Interview participant information

Pseudonym Age Gender, race/ethnicity Perinatally or

behaviorally infected?

Found out status

within previous year?

Predominant type

of motivation

Gordon 17 Male, African American Behaviorally Yes Autonomous

Priscilla 18 Female, African American Perinatally No Controlled

Maribel 18 Female, Hispanic Perinatally No Controlled

Nate 18 Male, Hispanic Perinatally No Autonomous

Sasha 18 Female, African American Perinatally No Autonomous

Steve 18 Male, Hispanic Unknown No Amotivation

Tania 19 Female, African American Unknown No Amotivation

Tyrone 17 Male, African American Perinatally No Controlled

Vincent 18 Male, Hispanic Behaviorally Yes Amotivation

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the concepts relevant to SDT, and their properties and

dimensions were compared until categorical saturation was

achieved (Strauss and Corbin 1998). The authors engaged

in a process to establish inter-rater reliability that consisted

of multiple readings of coded data and discussions to

establish that the codes related to the data and appropri-

ately represented SDT concepts. The first stage of the

process resulted in approximately 85 % agreement. After

consultation, the authors revised their codes to reflect

100 % agreement.

Construct validity was established in three ways to form

correct operational measures of the concepts of self-

determination, motivation, and disclosure: multiple sources

of evidence, chains of evidence, and member checks. First,

multiple sources of evidence (i.e., observations and inter-

views with adults and youth participants) were collected

and the researchers confirmed their convergence on the

same set of findings. Second, an established chain of evi-

dence was created through links between the questions

asked, data collected, and conclusions drawn to ensure a

logical, sequential process that could be anticipated and

reproduced by external auditors. Third, to improve the

credibility of the findings, the first author conducted

member checks with most of the participants from the 2010

program during focus groups held during the 2011 pro-

gram. Participants confirmed that the three types of moti-

vation related to their behaviors and attitudes about

disclosure. The analytic strategy to ensure internal validity

involved relying on the theoretical propositions of SDT to

make sense of the findings, and employed a constant

comparison approach to analysis (Strauss and Corbin

1998). Finally, this study includes a documented auditable

database available upon request to provide reliability. The

authors remained aware and reflexive of potential biases

throughout the study by keeping a researcher journal and

discussing findings with others who work with and conduct

research with youth with HIV/AIDS, and on SDT.

Results

Results of the data analysis revealed that participants

shared both actual past experiences or behaviors, and

intentions or attitudes about disclosing. The results focus

on actual past behaviors, but it is important to note that

attitudes were integral to participants’ explanations about

their motivations to disclose.

Amotivation

Amotivation occurs when individuals experience a lack of

intention and motivation to act (Deci and Ryan 2008a).

Explanations of why they felt amotivated to disclose were

the most frequently discussed by all participants, even

those who indicated that they were autonomously moti-

vated to disclose. Amotivation came from two recursive

sources: fear of stigma and previous experiences of others

disclosing without their consent. When others disclosed

without their consent, participants were less likely to dis-

close because they perceived a loss of control over infor-

mation shared and imagined negative reactions, further

reinforcing their amotivation to disclose. Results related to

amotivation had a global quality, wherein the participants

explained their lack of intention to disclose to people in

general, not specific and known people.

Participants reported feeling amotivated when others

disclosed their status for them, without their permission.

Even though participants wished to keep their status private

(i.e., ‘‘It’s my business’’), they often had no perceived or

real control over others’ actions. Peers and parents or

caregivers sometimes disclosed participants’ statuses

without their consent, leaving the participants to handle

whatever fall-out occurred and often fracturing the rela-

tionships. From observations of discussions about disclo-

sure, it appeared that there were slightly more instances of

disclosure without participant consent from parents and

close family members than by friends or peers. The neg-

ative reactions to disclosure thwarted the participants’

social-contextual environment that could have supported

autonomous motivation.

A participant in a group discussion about disclosure

described how she felt when her aunt told her that her

mother told her about her status: ‘‘It’s my business. For her

to tell her [shakes head and sucks teeth]. You can’t tell my

business, especially to someone I don’t like.’’ The partic-

ipant expressed bitterness about the incident that reinforced

her lack of intention to disclose to others; she believed that

if she told others, they might tell others without her per-

mission as her mother had done. ‘‘Vincent’’ provided this

experience at school as the reason for why he did not

disclose his status.

I moved over here to go to high school, and my dad

told my teachers, or someone in the school and it got

around, and all the kids were messing with me. Like I

went to school, I wasn’t expecting it. I went to school

one day and it was like that. They would make

comments in front of me, like loud enough so I could

hear, like ‘be careful, I heard that guy’s got a disease,

be careful, don’t eat at the same table because you

might get what he’s got.’ Then little by little they

started [saying] ‘‘HIV and AIDS.’’

Participants also discussed reasons they were amotivat-

ed to disclose because of specific examples of previous

experiences in which the person to whom they disclosed

reacted in negative ways. Implicit in these descriptions was

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the belief that if their closest and caring family members

would reject them, they could expect nothing more from

people less close. For example, Vincent explained that his

father used to ‘‘give me hugs, kisses, take me out. But after

all this, everything stopped.’’ Later in the interview, Vin-

cent described his family interactions and said, ‘‘For a

while, they kind of rejected me and would keep their dis-

tance,’’ and did not want Vincent to touch his baby cousin.

Stories were common of family rejection based on inac-

curate knowledge of HIV transmission. ‘‘Sasha’’ expressed

anger and frustration about her grandmother over the years:

The only person who didn’t accept it [having HIV]

was my grandma, and she’s really distant from me.

She just started hugging me like this year ‘cause

[before] she thought she would get it. I remember

when we were little and we were at the pool and she

wouldn’t get in the pool ‘cause she thought she could

catch it thataway.

Hearing other people’s negative stories of disclosure

also promoted participants’ amotivation to disclose. For

example, while discussing the effects of her participation at

a camp for youth with HIV/AIDS on her decisions to dis-

close, ‘‘Maribel’’ explained, ‘‘It more scared me sometimes

though, all the stories that I heard [at camp]. So I was

always more cautious.’’ Maribel did not want those nega-

tive stories and consequences to happen to her, further

reinforcing her amotivation.

‘‘Gordon’’ summarized the attitude of many of the

program participants about why they had no intentions to

disclose, ‘‘I feel like, friends, especially the school I go to,

you tell one person somebody something, it go to one

person and the next person and it come back. And then you

never know how people gonna take it.’’ When asked why

they did not tell people their status, Gordon replied

‘‘Rejection,’’ and Maribel replied, ‘‘There are judgments

out there.’’ ‘‘Priscilla’’ was asked if she would ever speak

in public about her HIV status, and replied, ‘‘No. Because

the world is so cruel and I can only take so much. I can

only take so much.’’ Priscilla had recently graduated high

school after enduring 4 years of persistent stigma and

negative interactions because of her known positive HIV

status. Predominately amotivated participants believed that

they had a lack of control over the transmission of

knowledge about their HIV status, and over others’ reac-

tions to learning the news, so they had a lack of purpose or

plan to disclose status for any reason.

Controlled Motivation

Controlled motivation ‘‘involves behaving with the expe-

rience of pressure and demand toward specific outcomes

that comes from forces perceived to be external to the self’’

(Deci and Ryan 2008a, p. 14). Controlled motivation con-

sists of both external regulation in which one’s behavior is

controlled by external factors related to reward or punish-

ment, and introjected regulation in which the behavior

is related to avoidance of shame, approval-seeking, and

conditional self-esteem (Deci and Ryan 2008b). Results

indicated that controlled motivation to disclose HIV status

occurred when participants were motivated to disclose

because of reasons related to other people, rather than

internal or personal reasons. Controlled motivation to dis-

close HIV status included the reasons of wanting to gain a

closer relationship, reciprocate a shared secret, for psy-

chological or emotional relief, and for attention.

Disclosing to gain a closer relationship was the most

common theme in the category of controlled motivation.

Priscilla explained, ‘‘When I get ready to tell someone,

mainly it’s because I’m in a relationship with them … because they wanted to be intimate.’’ Some participants

had ‘‘scripts’’ for disclosing, such as ‘‘Nate’’ who

explained, ‘‘Like, before I actually become officially, they

become officially my friend friend, I’ll kinda test them

out.’’ Maribel used a similar strategy to disclose, ‘‘I used

the whole hypothetical method, like ‘What if I told you

this, or what if I told you that?’ See how the person

responds to that to decide if I really want to come out and

tell them.’’

Often, participants discussed their attitudes about dis-

closing to gain a closer relationship. Vincent discussed

what it might be like making friends and disclosing to them

in college: ‘‘If they’re a good friend they have a right to

know so they can be a support system or they can keep

their distance from me or whatever.’’ Gordon explained

how relationships could be tested by disclosing: ‘‘If they

really love and care about you, they want to be with you.

But if they leave you, you know how they really feel. If

they really care, they’ll stay.’’

The theme of ‘‘reciprocity’’ emerged in several inter-

views and group discussions, and participants reported that

they often disclosed their status to another individual

because that person had first disclosed something private or

sensitive to them. Participants seemed to experience some

pressure to disclose to someone else, based on their per-

ceptions of the relationship, but disclosure was still vol-

untary to a limited degree. Feelings leading up to the

disclosure conversation were reported as containing a sense

of pressure or conflict, and lack of integration or comfort

with the self.

One program participant shared her criteria for dis-

closing her status in romantic and potentially sexual rela-

tionships: ‘‘If you’re together for a month, that shows a

level of commitment and you have a trust basis.’’ Priscilla

conveyed a specific situation: ‘‘I told this one dude because

he shared some personal information about being raped or

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whatever, and I told him that ‘cause I guess I feel that I was

obligated to tell him that for some reason.’’ Later Priscilla

discussed what happened for her in a couple of her rela-

tionships: ‘‘You feel like he’s telling you everything about

him, and you’re telling him everything too, but if you don’t

tell him this it’s like a weight on your shoulders. You like,

‘I have to, I have to.’’’

A few instances emerged of disclosing for psychological

or emotional relief. Maribel expressed feelings of obliga-

tion to disclose her status to her friends as a way of

explaining why she took medicine while on overnight trips

or visits: ‘‘I didn’t want them to think I was taking drugs or

anything [laughs].’’ Telling her friends her status relieved

the burden of ‘‘sneaking around.’’ She explained that she

told her friends because ‘‘I didn’t see the point of that when

I already trusted them. So I might as well just tell them, and

I did so they would know and everything.’’ Similarly,

‘‘Tyrone’’ discussed in his interview his primary reason to

disclose to his best friend: ‘‘Get the weight off my shoul-

ders, then I would know what he was gonna say.’’ An adult

mentor explained that she observed that participants dis-

closed to cause ‘‘whatever questions people are asking to

stop.’’ Gordon disclosed to his guidance counselor to

relieve the pressure created as the counselor kept asking

him how he felt about being sick and sharing with Gordon

his own personal experiences with his father who had HIV.

Data analysis of controlled motivation to disclose

resulted in some minor themes that were inherently

untestable because the source of the information was sec-

ond-hand. First, disclosing to receive attention included the

receipt of awards and recognition for educating people

about HIV, disclosing for ‘‘shock value,’’ and legal obli-

gations to disclose. During an interview with Nate (who

expressed primarily autonomous motivation to disclose his

status), he shared that he had received several awards for

his volunteer work in educating people about HIV/AIDS.

He relayed in an interview and with another adult mentor

that his mother suggested that getting awards and recog-

nition was why he disclosed so publicly. However, Nate

railed against that accusation and was adamant that per-

sonal recognition or awards were not his purposes in his

public disclosure efforts. Additionally, one program par-

ticipant was perceived by adult mentors to disclose his HIV

status to ‘‘shock’’ others. According to one of the adult

mentors who knew him for several years, this participant

disclosed at assemblies at his school to gain social status,

pity, and attention. The adult mentor explained that for

some youth, ‘‘I think for some of them it’s reaching out.

The need of love. And if they disclose, would that person

feel sorry for them, and show them more love?’’ Finally,

during workshops with facilitators, several participants

raised questions about the requirement to disclose their

status to sexual partners because of legal obligations, which

reflected the potential for additional aspects of controlled

motivation to disclose. In sum, participants with predomi-

nantly controlled motivation disclosed because disclosure

was expected within the context of the relationship, not

because they valued disclosure.

Autonomous Motivation

Autonomous motivation ‘‘involves behaving with a full

sense of volition and choice,’’ (Deci and Ryan 2008a, p. 14).

Autonomous motivation consists of identified/integrated and

intrinsic regulation. Identified/integrated regulation refers to

behavior that, while somewhat influenced by extrinsic fac-

tors, is primarily sourced within the individual because of

valuing of activities that have personal importance or

because activities reflect their set of goals and values.

Intrinsic regulation refers to behavior done because of the

positive feelings associated with the behavior itself.

The category of autonomous motivation was the

smallest of all categories of motivation in terms of par-

ticipants sharing actual previous experiences. Rather, sev-

eral participants speculated on what they might do in the

future. Autonomous motivation included two themes: the

life perspective that ‘‘Having HIV is just part of who I am,’’

and valuing educating others because education was per-

ceived as important and beneficial to others. Education

consisted of talking to friends or strangers about HIV/AIDS

in general or in relation to participants’ personal experi-

ences. However, although the disclosure occurred by

choice, participants did not indicate enjoying or feeling

comfortable with the process of disclosure (with the

exception of Nate, discussed below). Rather, autonomously

motivated disclosure seemed to be a hardship that was

ultimately worthwhile because of its integration with the

self and alignment with personal values.

A few participants discussed their attitudes regarding how

living with HIV was integrated into their lives. Nate

explained his approach: ‘‘It’s kind of easy for me to tell

people because I’m a real person and if you don’t like me for

who I am, then obviously you might miss out on a very cool

person and maybe a longtime friend.’’ He also explained that

‘‘HIV’s not a death sentence, it’s a lifestyle … Just because I have HIV doesn’t mean anything else … I’m not any dif- ferent from anyone else.’’ Two participants discussed what

they thought about Nate’s approach and suggested that they

wanted to adopt his attitude. For example, Gordon shared his

plans for when he returned to school in the fall: ‘‘I’ll be … saying ‘So what? I have it. I’ve been going to school with you

all year, and I’m still here. I eat so much food, I’m healthy.’

That’s why I think now I can tell people.’’

Some participants perceived disclosure as a necessary

opportunity and responsibility to educate others on an

important and potentially life-saving topic. Some interview

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123

participants shared that they had used or planned to use the

opportunity to educate others about HIV/AIDS as a

springboard for disclosing their status. ‘‘Tania’’ explained

that she wanted to tell more people about her status because

she was ‘‘mad that people are clueless and ignorant.’’ Nate

frequently wore tank tops that revealed on his shoulder a

3-inch by 1-inch red AIDS ribbon tattoo. He used the

display of his tattoo as an invitation for others to ask him

about it, to talk about his status and how he acquired HIV,

and to answer questions. Nate frequently spoke to high

school classes and community groups about HIV/AIDS.

Discussing his decisions to disclose his status while

teaching classes about HIV/AIDS, Nate said, ‘‘I have the

choice not to tell them or to tell them. But I want to. I

should tell them because they’ll get more out of it [if I tell

them about my status], but I really don’t have to.’’

Two participants (Sasha and Nate) discussed instances

of public disclosure. Sasha discussed what happened when

she allowed her picture to be published on the front page of

a newspaper that mentioned her positive HIV status:

It made me feel better about myself because I don’t

like keeping secrets too much. ‘Cause at times I get

depressed and I keep too much inside and it just

overflows and I will break down. So I just wanted to

let that out, just a little bit.

Later in the interview, Sasha expressed nervousness but

openness to engaging in further public speaking at the

bequest of her doctor; she understood the decision to do so

to be her choice.

Other participants shared that they utilized opportunities

to disclose when the topic of HIV or AIDS emerged in social

situations. Some participants wanted to educate others

because they wanted their friends to know more about their

lives and not be worried for their health. Maribel discussed

the importance of education to reduce stereotypes and mis-

information, ‘‘Like how it can be transmitted. And how

nowadays, especially with technology and medicine, a per-

son can live a relatively normal life, it’s not like they’re in the

hospital or having a hard time.’’ Tyrone speculated on what

would happen when he told his best friend: ‘‘[He will]

probably will have the same response as everybody else, like

‘Oh, are you gonna die?’ Or [I will] have to explain to him the

whole, explain that the virus attacks the immune system.’’

Priscilla explained why it was so important to educate

others: ‘‘So they won’t have to go through the same thing

… So, I would hate that to happen to anybody, even my worst enemy. I wouldn’t wish [HIV] on anybody.’’ Priscilla

shared a story of educating her friend that reflected a

conscious valuing of education:

I told one girl because she was really sexually active

and I was like ‘You have to stop. Because I can sit

here and tell you I have HIV.’ She said ‘Huh?’ I said

‘Yeah. It don’t mean that the person you’re sexually

active with will tell you.’

Sasha referred to her motivation to educate others as

wanting to ‘‘Put out a warning hoping that somebody else

would listen. To help save somebody else.’’ Sasha hoped to

educate others through her poetry so that they would

understand living with HIV/AIDS and ‘‘know how that is.’’

The most autonomously motivated participant was Nate,

as evidenced by his response to a question about what

makes it easier to tell people his status:

HIV is who I am and I do value it, and it’s something

I’ve been taught through my whole life since I got

diagnosed and my mom educated me ever since I was

diagnosed and I’ve been educated on it and it’s been

drilled in my head, like for years, and I research it

myself and I love doing it [educating others].

Nate demonstrated integrated motivation as he

explained his approach to education: ‘‘I’ll take all the

personal questions you want. It can be anything from me

having sex to I want to have a kid when I’m older. I don’t

mind, I will answer them with honesty.’’ In sum, instances

of autonomous motivation to disclose HIV status reflected

motivation that came from within the self, with full choice

and volition, and for purposes related to personal identity

and educational goals.

Discussion

This study utilized SDT to understand young adults’ moti-

vations to disclose their HIV status. The results of this study

indicate that SDT is useful for understanding types of self-

determined motivation (i.e., amotivation, controlled, and

autonomous motivation) to disclose. Amotivation was the

most commonly reported type of motivation, and involved

fear of stigma and rejection based on real or perceived

instances of information shared by others without consent in

personally important social contexts, and feelings of loss of

control over information shared about their status. The

accumulation of negative experiences over time seemed to

reinforce in participants feelings of amotivation. Controlled

motivation involved participants wanting to disclose to gain

a closer relationship, reciprocate a shared secret, for psy-

chological or emotional relief, and for attention. Autono-

mous motivation involved participants’ life perspectives that

‘‘Having HIV is just part of who I am,’’ and having values and

goals to educate others. Given that a fundamental premise of

SDT is that people are naturally inclined toward growth and

well-being, opportunities to experience active or autono-

mous motivation are warranted, especially for adolescents.

J Child Fam Stud (2013) 22:672–683 679

123

Disclosing one’s HIV status because of relationship-

related external motivations reflected controlled motiva-

tion. In this study, disclosure was a means to an end for

most participants, and was not done for any inherent sat-

isfaction found in disclosure. Therefore, we conceptualized

controlled motivation as a type of motivation intended to

bring others closer. That is, the motivation to disclose was

controlled by intentions to manage relationships with oth-

ers. This particular finding extends the concept of con-

trolled motivation in the field of SDT. The motivation to

disclose to deepen a relationship, reciprocate a shared

secret, to gain psychological or emotional relief, and to

garner attention has strong connections to other research on

social support and HIV disclosure. For example, social

support in the context of HIV/AIDS can be important for

health outcomes because members of an individual’s social

network who are aware of individuals’ HIV status can

provide encouragement and support for medication adher-

ence (Roberts and Mann 2000).

Disclosing one’s HIV status for inherent personal sat-

isfaction reasons reflected autonomous motivation. In this

study, disclosure was personally valuable because of its

relation to personal identity and as a means to educate

others about HIV/AIDS. Therefore, we conceptualized as

autonomous motivation this type of motivation that was

inherently personal. The helping attitude reflected in the

autonomous motivation to disclose as a means for educa-

tion about HIV/AIDS can promote feelings of closeness

with others, which can be important for youth feeling

isolated because of their HIV status. Participants’ expla-

nations of motivations to disclose as a means to educate

others about HIV/AIDS relates to SDT-based research on

volunteering. Thoits (1994) suggested that people with

greater personal well-being tend to have more volition to

volunteer, such as those with positive personality attributes

(e.g., happiness, self-esteem, low depression). Addition-

ally, people with more social resources are more likely to

volunteer and this work in turn promotes further well-being

(Mellor et al. 2009). Weinstein and Ryan (2010) suggested

that autonomous motivation for helping provides benefits

for both helper and recipient because both experience

greater need satisfaction. Autonomous motives underlying

adolescents’ identity styles have been shown to positively

relate to commitment and personal well-being, whereas

controlled motives negatively relate to psychosocial

adjustment outcomes (Smits et al. 2010).

In an evaluation of the impact on HIV-positive people of

public disclosure of HIV status, Paxton (2002) found that

decreasing stigma and stopping new infections were

equally strong motivators to becoming community AIDS

educators. Participants reported that public disclosure led

to a diminution of discrimination, was extremely reward-

ing, and led to a less stressful, more productive life and

improved well-being. Paxton’s findings, combined with the

findings from this study, suggest a need for further research

on the benefits associated with autonomous motivation in

the context of public HIV disclosure. For example, Nate

and Sasha (and a couple of other program participants)

appeared to demonstrate indicators of well-being, such as

hope for the future and desire to improve their communi-

cation skills through formal education with the purpose of

educating others.

Implications

The findings from this study indicate implications for

policy and practice for people who work with and care for

youth living with HIV/AIDS. Specifically, practitioners can

utilize these findings to gain understanding of the lived

experiences of young people with HIV/AIDS that can

inform counseling and programming. Through under-

standing the issues related to self-determined motivation to

disclose status, practitioners can develop empathy and

sensitivity, and can better support clients as they explore

issues, develop goals, become empowered, and enact

decisions based on clarified personal values.

Given that autonomous motivation closely relates to

enhanced physical, emotional, and psychological well-

being in domains other than HIV disclosure, practitioners

should work with clients to identify potential positive

social and emotional benefits of disclosure, such as by

learning about others’ positive experiences. Of course, it is

imperative to compassionately respect the type of moti-

vation to disclose that individuals possess; disclosure can

be a life or death decision for some youth. Still, disclosure

can have numerous benefits outside of the self as well,

especially regarding the decrease and elimination of stigma

throughout communities. More research is needed about

the conditions, contexts, and situations that lead to auton-

omous motivation to disclose, and how to create these

conditions that support growth and well-being.

When parents (and peers) tell others without permission,

it breaks the security of attachment and brings into question

one’s sensitivity and responsiveness (LaGuardia et al.

2000). Emotional reliance (willingness to turn to others in

emotionally salient situations) is associated with greater

well-being and varies across different relationships, cul-

tural groups, and gender (Ryan et al. 2005). Given this,

counseling and support policies for families should make

explicit the potential negative consequences of disclosing

youths’ status.

We urge practitioners to carefully consider the

assumption that frequent and public disclosure is most

beneficial for people living with HIV/AIDS. This might

be true on a population-level. However, in this study,

680 J Child Fam Stud (2013) 22:672–683

123

individuals who were amotivated to disclose their status

seemed likely to experience harmful outcomes of pressured

disclosure such as loss of trust and self-esteem or loss of

significant personal relationships, and amotivation contin-

ued in a reinforcing cycle because of these concerns.

People living with HIV can have difficulty maintaining

close personal relationships because of stress associated

with the diseases and rejection from close ties (Brashers

et al. 2004). Youth with HIV/AIDS are wise to consider the

quality of the relationship before disclosing and make

‘‘educated guesses’’ about the potential trajectory of their

relationships (Poindexter and Shippy 2010).

People within the support systems of youth with HIV/

AIDS could increase their discussions of disclosure tech-

niques and planning. Supporting youth in developing a

healthy social identity could include discussions about

strategies to challenge stigmatizing attributions projected

onto people living with HIV/AIDS. Bakeera-Kitaka et al.

(2008) found that young people with HIV in their study

lacked specific behavioral skills, such as disclosure of HIV

status to their sexual partners, and this closely linked to

fear of rejection and stigma. Sturdevant et al. (2001) found

that without disclosure, less condom use was reported, even

controlling for the perception that the sexual partner was

infected. Garnering positive social support can be an

important life skill and create greater protective factors for

youth (Lam et al. 2007).

Limitations to this study exist. This study utilized a

broad distinction between three primary motivation types

rather than precise distinctions between the six types of

motivation in the SDT continuum. Additionally, this study

is limited in generalizability because of the small sample

size of nine participant interviews. However, the conver-

gence of data from participant observations and interviews

with staff members in conjunction with member checks

and other means to improve reliability and validity of the

qualitative adds rigor to the findings.

Future research is needed. More research should be

conducted to quantitatively measure the types of motiva-

tions to assess their prevalence in the context of HIV dis-

closure. Longitudinal studies should be conducted to

explore if and how self-determined motivation to disclose

changes over time. Research should be conducted with age

groups older and younger than adolescents aged 17–19 to

further establish operational constructs of SDT in the

context of HIV disclosure, such as experiences of auton-

omy, relatedness, and competence. Future research should

also include variables related to length of time that par-

ticipants have known their status, and the mode of trans-

mission (i.e., perinatal or behavioral).

This study extends SDT into the domain of HIV dis-

closure in older adolescents. SDT proposes that people are

at optimal functioning when they are engaging in activities

that are interesting and enlivening. Goffman (1963) sug-

gested that deciding to disclose a stigmatizing condition

can transform people from passive recipients of stigma into

an active agents in control of their own lives. This reso-

nates with the basic premise of SDT that ‘‘people are active

organisms, with evolved tendencies toward growing,

mastering ambient challenges, and integrating new expe-

riences into a coherent sense of self,’’ (SDT Overview,

www.psych.rochester.edu/SDT/theory.php). As Paxton

(2002) noted, there is a ‘‘paradox’’ in coming out openly as

an HIV positive person because ‘‘in facing monumental

fear and stigma, one is inevitably liberated from the

overwhelming burden of secrecy and shame, (p. 588).

Disclosure can be ultimately beneficial to all concerned

because it can enrich the disclosers’ lives and help their

communities increase in compassion and care for people

living with HIV/AIDS.

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