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PARENTS’ PERCEPTION TOWARDS DISCLOSURE OF THEIR HIV POSITIVE STATUS TO THEIR

CHILDREN:

AKELLO SAFINA

2008/BNC/004/PS

A RESEARCH DISSERTATION SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENT

FOR THE AWARD OF THE DEGREE OF BACHELORS OF NURSING SCIENCE OF MBARARA

UNIVERSITY OF SCIENCE AND TECHNOLOGY.

SUPERVISOR:

KABASINDI JOY KAMANYIRE.

JUNE, 2010
DECLARATION

I AKELLO SAFINA declare that the work presented in this study is my own work and to the best of my knowledge

has never been presented to any institute of higher learning for any academic award.

Signed…………………………on this ……………….day of……………….

Akello Safina

Supervisor’s Approval

This research work has been conducted under my supervision and my approval.

Signed…………………on this………………..day of………………….

Kabasindi Joy Kamanyire

Supervisor.

Department of Nursing

Mbarara University of Science and Technology

P .O.Box 141

ii
DEDICATION

I dedicate this work to my beloved husband Mr. Okiror Asuman who has tirelessly supported me morally, spiritually

and financially with love and patience.

My entire family Adam, Shafic, Fazira and daughter Ajeso Zam Zam for the encouragement.

To my parents Mr. and Mrs. Amis Kirube for their support, guidance and daily prayers.

To my brothers and sisters, Sarah, Asuman, Amis, Rukiya, Kadija, and Aisha.

MAY ALLAH BLESS YOU ALL

iii
ACKNOWLEDGEMENT

First of all, I give the greatest honor to ALLAH who has always been with me, heard my prayers and gave me the

wisdom in bringing this work to completion.

I extend my heartfelt gratitude to Ms Joy Kabasindi who led me from the beginning up to the end, all the patience and

advice she offered me during all the stages of preparing this report and also for taking me as an individual, may

ALLAH bless you in your entire endeavor.

Special thanks to Ag. Head of Department Nursing, Mr. Joseph Mwizerwa, and his entire staff without whose support,

I would have not reached the end of this journey today. May God reward your efforts individually.

My appreciation and thanks also go to the Medical superintendent SRRH and SPNO, the in charge PIDC Dr Florence

and the staff of PIDC for the support rendered during this study Special thanks go to my friend Mrs. Angoli Monica,

Ms. Apolot Christine, Ms Ajulong Jennifer Juliet, Ms. Agweto Magdalene who encouraged me spiritually and

physically to raise my spirit when it was low and to focus at the end of the Journey. Not forgetting to thank the entire

course mates with whom we encouraged our selves daily. May ALLAH bless them!

Lastly, I would like to thank all those who contributed in one way or the other but cannot be mentioned individually.

May you live long and peace be with you all.

iv
TABLE OF CONTENTS

ACKNOWLEDGEMENT..............................................................................................................iv

TABLE OF CONTENTS................................................................................................................v

LIST OF ABBREVIATIONS......................................................................................................viii

DEFINITION OF TERMS.............................................................................................................ix

.....................................................................................................................................ix

............................................................................................................................................ix

ABSTRACT....................................................................................................................................1

CHAPTER ONE..............................................................................................................................2

1.0 INTRODUCTION.................................................................................................2

1.2 PROBLEM STATEMENT.......................................................................................4

1.3 SIGNIFICANCE OF THE STUDY............................................................................4

1.4 STUDY OBJECTIVES............................................................................................5

1.4.1 General objective........................................................................................5

.....................................................................................................5

........................................................................................................................................................6

CHAPTER TWO.............................................................................................................................6

2.0 LITERATURE REVIEW........................................................................................................6

2.2 Parents not willing to disclose their HIV status..............................................7

2.3 Challenges faced by parents who do not disclose their HIV status................8

2.5 Conceptual Model.........................................................................................11

CHAPTER THREE:....................................................................................................................13

3.0 METHODOLOGY...............................................................................................13

3.1 Study area....................................................................................................13

v
3.2 Research design...........................................................................................13

3.3 Study participants........................................................................................13

3.4 Sampling method.........................................................................................14

3. 5 Sample size.................................................................................................14

The sample size for qualitative descriptive study is often smaller than in other qualitative designs
(Magilvy & Thomas, 2009). Being a qualitative study, this was determined by saturation point, the
point when no new data emerged with further sampling (Polit & Hungler, 1999). Ten (10) parents
were enrolled from the PIDC clinic into the study..............................................14

3.6 Inclusion criteria...........................................................................................14

3.7 Exclusion criteria..........................................................................................14

3.8 Data generation tool....................................................................................15

3.9 Data generation procedure..........................................................................15

3.10 Rigors of the research..............................................................................15

3.11 Data analysis..............................................................................................17

3.12 Ethical consideration..................................................................................18

3.13 Limitations.................................................................................................18

3.14 Dissemination............................................................................................18

CHAPTER FOUR.........................................................................................................................19

4.0 DATA ANALYSIS.................................................................................................................19

4.1 Introduction ....................................................................................................19

4.2. Demographic characteristics of the participants ...........................................19

4.3. Results...........................................................................................................19

4.3.1 Theme 1: Imperative.................................................................................20

4.3.2. Theme 2: Reactions.................................................................................21

4.3.3. Theme 3: collaborative.............................................................................22

4.3.4. Theme 4: Challenging..............................................................................23

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.................................................................................................................25

CHAPTER FIVE...........................................................................................................................25

5.0 DISCUSSION OF RESULTS ................................................................................................25

CHAPTER SIX..............................................................................................................................29

6.0. CONCLUSION AND RECOMMENDATIONS.................................................................29

6.1: Conclusion...................................................................................................29

6.2 Recommendations...........................................................................................29

REFERENCES:.............................................................................................................................32

APPENDIX A: Interview guide....................................................................................................36

APPENDIX C: Table of themes and categories............................................................................38

vii
LIST OF ABBREVIATIONS

AIDS Acquired Immune Deficiency Syndrome

ANC Antenatal clinic

ARV Antiretroviral

CNE Continuing Nursing Education

DON Department of Nursing

HIV Human Immunodeficiency Virus

JCRC Joint Clinical Research Center

MLWHS Mothers living with HIV/AIDS

MUST Mbarara University of Science and Technology

PIDC Pediatric Infectious Disease Clinic

SRRH Soroti Regional Referral Hospital

WHO World Health Organization

viii
DEFINITION OF TERMS

Child: Is a person below the age of eighteen years.

Disclosure: The ability of an individual to tell others about his/her status.

HIV positive: Is showing evidence of infection with the human immune deficiency virus

(HIV) cause of acquired immune deficiency syndrome (AIDS) for example

the presence of anti bodies against HIV on test of blood or tissue.

Parent: Is the biological male who sired or the female who gave birth to the child.

Perception: A way an individual interprets reality.

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ABSTRACT

Self- disclosure is sharing information with others (in these case children) that they would not

know or discover. Parents’ disclosure of HIV positive status to their children has emerged as one

of the main concerns in the fight against HIV/AIDS both in developed and developing countries.

Clinicians encourage parents to disclose because of the advantages. To better understand this, a

study was done to describe the parents’ perception towards disclosure of their HIV positive

status to their children.

Using a qualitative descriptive design, ten participants were recruited using a purposive sampling

method from a Pediatric Infectious Disease Clinic (PIDC) in Soroti Regional Referral Hospital.

Data was collected using an in-depth interview guide and was recorded. This was then

transcribed and analyzed by qualitative content analysis to provide a rich straight description of

the event in study. Four themes emerged from nine categories describing parents’ perceptions.

The themes were imperative, collaborative, reactions and challenging. Therefore it was found

that parents perceived disclosure of their HIV status to their children as an important or

imperative action that ought to be a collaborative activity of both community and healthcare

providers but is challenging especially when children’s reactions to disclosure are considered

first. Implications to Nursing practice, education and administration were highlighted. Also areas

of future research were identified.

1
CHAPTER ONE

1.0 INTRODUCTION

Self- disclosure is sharing information with others (in these case children) that they would not

know or discover (Borchers, 1999). Parents’ disclosure of HIV positive status to their children

has emerged as one of the main concerns in the fight against HIV/AIDS both in developed and

developing countries (Murphy, 2008). Clinicians often advise parents to disclose their HIV

status to their children because it is thought that both parents and children can benefit from

disclosure (Armistead & forehand, 1995; Zeya’s & Romano, 1995).The choice to disclose or

conceal one’s status remains that of the infected person. However both disclosure and

concealment might result in disadvantages like social isolation, diminished access to health and

social services and diminished sense of personal control (Greeff, et al 2008).

According to the American Academy of pediatrics guidelines (1999), some of the benefits of

disclosure of status include: improved adherence, enhanced access to support services, open

family relationship, better long term health and emotional well-being in children. As well not

disclosing can take physical and psychological tolls on parents, by not taking their medication at

times because they are afraid their children will observe them and suspect something wrong. In

addition to that, they even schedule medical appointments only when children are in school

therefore dodging these appointments (Hack et al, 1997, Mellins et al; 2002; Murphy et al,

2001).

The decision about disclosure can result in high levels of tension and stress for parents; hence

many parents choose not to tell their young children about their HIV status due to worry that the

children will not be able to handle the news (Black, 1993). They find themselves in a dilemma

2
because they must also weigh the benefits of disclosure against the risk that sharing the

information might make the family vulnerable through the child’s disclosure to others (Murphy,

et al, 2001).

Uganda has been held up as a model for Africa in the fight against HIV/AIDS in the 1990s but

the trend of infection is changing now. Initially in the 1980s when the first AIDS case was

identified in Uganda there was a rapid spread of HIV with the prevalence of 29% in urban areas.

Then in 1990s-2000 with the intensive fight against HIV, which was achieved mainly by the

national response and behavior change. The prevalence fell dramatically from the peak in 1991

of around 15% among adults to 5% in 2001, and it stabilized during 2000-2005(Avert, 2010)

Uganda has been an innovative leader in Africa and the world in the development of counseling

strategies for HIV/AIDS. Yet even in this progressive environment, policy directors for this

largest counseling and testing organizations admit parent-child disclosure issues have had little if

any attention until recently and much work remains to be done (Rwemisisi, 2008).

In conclusion disclosing own HIV status has many advantages such as improved adherence,

enhanced access to support services, open family relationship, this remains a challenge to

various parents as deciding to disclose or not to disclose their status to children. They have to

weigh the benefits against the risk. Therefore, there is need for HIV counselors and other health

care providers to be equipped to provide parents with advice and skills to engage in the process

of disclosing their own HIV status while offering assistance where appropriate and as desired.

3
1.2 PROBLEM STATEMENT.

Most studies carried out on parents’ perception towards disclosure of HIV status to their

children, showed that some parents are not willing to disclose their status, while others are

willing to disclose but still have challenges. Yet still there are low rates on parent-child

disclosure (Tompkins, 1999, Rwemisisi, et al., 2008).

Although there are efforts to explore parents’ perception towards disclosure of HIV status to

their children, there is little or no research done in Soroti Regional Referral Hospital. During the

researchers practice as a nurse counselor in Soroti regional referral hospital (SRRH), there was

still an encounter of more children who accessed medical treatment in the pediatric clinic that

had never known their parents status compared to those who knew. This was also compounded

by the fact that their parents got their treatment from elsewhere.

1.3 SIGNIFICANCE OF THE STUDY

Once an insight is obtained on how actually parents perceive disclosure of their HIV status to

their children, this information will help modify the current counseling and guidance practice for

nurse counselors. This will also provide nurse practitioners with a broader and deeper

understanding of one’s own practice and the patients for whom they provide care.

In addition, this vital information will be integrated in to the nursing curriculum to help nursing

students in perfecting their skill in counseling HIV positive parents on the importance of

disclosure of status to their children while overcoming perceived hindrances. Furthermore, the

findings will open up areas for further research into eliminating or overcoming any perceived

hindrances to disclosure of HIV status to children especially, if there are more benefits to

disclosure.

4
1.4 STUDY OBJECTIVES

1.4.1 General objective

To explore parents’ perception towards disclosure of their HIV positive status to their children

5
CHAPTER TWO

2.0 LITERATURE REVIEW

Both primary and secondary sources were used to retrieve literature from several relevant studies

done in relation to parent’s perception towards disclosure of HIV positive status to their children.

The literature search was got from published literature, internet and journals.

2.1 Parents willing to disclose their HIV status

Parents find disclosure to their children to be the most difficult type of disclosure. The

difficulties they anticipate frequently are related to the low rates of disclosure to children

(Tompkins, et al., 1999). Most studies indicate that parental health may determine the amount of

information disclosed to children, if not the actual disclosure itself. Lee & Rotheram-barus

(2002) found out that disclosure was significantly more common among parents with poor

health.

According to Armistead et al, (2007) mothers disclosed more than fathers and more to their

daughters than sons, also older children were more likely to receive a disclosure. Parents’

disclosure increased as their health deteriorated, more disclosure occurred 2-4years prior to death

(49%) rather than close to death (7%) within 1 year. A bigger percentage of children of HIV

infected mothers (age 6-11) were not aware of their mother’s status but most of the mothers

planned to disclose eventually (Shaffer et al, 2001).

6
In Lee & Rotheram-barus’ (2002) study it indicated that disclosures were more significantly

related to parents’ stressful life events and family life events. The rates were associated with

parents’ perceptions of the HIV-related stigmatization of their children.

Parents who had disclosed their HIV status to their children had reported stronger family

cohesion than those who had not disclosed (wiener et al, 1998). An example is of one rural

woman who disclosed her status to her family including her children aged less than 8years. She

has reported good adherence to taking her Antiretroviral (ARV) drugs because the children act as

her treatment supporters. They remind her every morning and evening to take her drugs which

has improved her outcome on Antiretroviral Therapy (ART) (Kemirembe, 2009).

2.2 Parents not willing to disclose their HIV status

According to Black (1993), many parents choose not to tell their young children about their HIV

positive status due to worry that children will not be able to handle the news. They also had to

weigh the benefits of disclosure against the risk that sharing the information might make the

family vulnerable through the child’s disclosure to others (Murphy, steers, & Dello Stritto,

2001). Parents feared that if children were disclosed to and told others it would create a negative

reaction from family and community members such as denying them parental and family care,

believing they are promiscuous, chasing them from their homes, rejecting them, calling them

names, being violet and discriminating them (Greeff, et al.2008)

Furthermore, (Black, 1993, Murphy et al; 2001; Weiner & Seprtimus 1990) concluded that

parents who deferred disclosure ran other risks. Among the children to whom disclosure had not

been done, suspected something wrong with their parents and experienced confusion and anxiety

7
as a result. Also other parents reported not taking their medication at times because they were

afraid their children would observe them and suspect something was wrong.

American Academy of Pediatrics (1999), in a research on disclosure of illness to children and

adolescent with HIV infection found out that; HIV positive parents often felt shame or guilt to

pass on their HIV infection with all its social and medical problems to their children. As a result

to decrease their own pain and suffering they unconsciously or consciously avoid discussing HIV

with their children. Also denial is common relating to parents’ own infection or the fact that their

children are positive themselves.

In the study done by (Greeff, et al. 2008), Parents felt they wanted to protect their children from

social stigma of HIV or felt uncomfortable to approach the topic thinking that children would be

ridiculed by fellow pupils or teachers when they or their parents were known to be HIV positive.

Others lacked the confidence in their children’s social filter with the fear that children will

discuss their HIV status openly, innocently, regardless of social context. As a result they expose

themselves to countless repercussions of an ignorant and judgmental society (Makoae, et al.

2008).

2.3 Challenges faced by parents who do not disclose their HIV status.

In studies done by (Dannenberg & Pao, 2005; Fault, 1997; Money ham et al, 1996) on the impact

of HIV/AIDS on the ability of mothers to raise their children, disclosure emerged as one of their

concerns. Among the many challenges faced by mothers living with HIV/AIDS (MLWHS) the

decision whether and how to disclose their HIV positive sero status to their children was a bigger

challenge.

8
According to Pilowsky, et al. (2000) these concerns may be increased among parents who have

younger children due to the fact that they face additional worries. This includes; whether the

child is old enough to understand or if she/he will be able to keep the information confidential.

This was of special concern among MLWHS who had school age children.

A study by Kmita, et al. (2002) on parents who were willing to disclose their status often did

not know how or when to bring up the subject. A common finding of these studies was viewed as

a burden of HIV stigma, which explained why disclosure of HIV status had been associated with

more negative outcome than disclosure of either less stigmatized illnesses like cancer (Hardy, et

al, 1994, Waugh, 2003).

Rwemisis, et al. (2008) carried out a study on the dilemmas of disclosing parental HIV status to

children in Uganda, it showed that in ten (10) parents interviewed, five (5) of them had disclosed

their status to some or all of their children. They also realized that their children could be

infected, but all preferred to wait for emergence of symptoms before considering HIV tests. This

was due to citing fear of children’s emotional reaction and lack of perceived benefits from

knowing status.

Lee and Rotheram-barus (2002), In their study on parents’ disclosure of HIV to their children,

observed that some parents disclosed very soon after their HIV diagnosis. They suggested that a

post test counseling with sero positive parents should encourage a delay in disclosure. This

should be until a time when the parents have dealt with their own feelings of anger, fear or

depression prior to disclosure and not to use this moment to get support for themselves from their

children.

9
Also if parents are discouraged from disclosing, an implicit message is communicated that HIV

is stigmatizing and must be hidden. Therefore individual parents should be prepared to disclose

considering their families’ circumstances and each child within that family. This helps them in

making their decision whether, when and how to disclose (Lee and Rotheram-barus, 2002).

According to American Academy of Pediatrics (1999) an increasing number of families are

living with a parent with HIV. This has created challenges for parents to decide how and when to

disclose their HIV status to their children. Parents consider disclosure to be essential by the time

children reach adolescence. But age, psychosocial maturity, complexities of family dynamics and

clinical context should be taken into consideration when and how much information to give to

younger children.

In the recent reports of 2006 on global HIV/AIDS prevalence, it indicated that there was an

increase now and that there was a shift from the singles to married couples of which they are in

the child bearing age. The prevalence was estimated to be 5.4% among adults, and the number of

people living with HIV in urban areas was 10% compared to rural areas 5.7% (UNAID, 2008).

In conclusion many factors have been seen above in various studies to hinder parents from

disclosing their status to their children. These are ranging from social factors, stigma, and age of

child, anticipated outcome of disclosure and as far as parental fear to have transmitted the

infection to their child. SRRH being one of the health facilities offering HIV services, this study

is aimed at exploring parent’s perception towards disclosure to their children and possible

suggestions in helping them.

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2.5 Conceptual Model

In this study, Sister Callista Roy’s Adaptation Model was used to predict and describe the

perception of parents towards disclosure of their HIV status to their children. According to

Basford & Slevin (1995), Roy viewed people as continuously interacting with and adapting to

their changing environment while striving for bio-psycho-social balance. She further assumed

that all forms of human behavior involve adaptation. As people are adaptive systems, the

occurrence of stress results in the necessity to implement adaptation. People react to stress with

two major internal control processes used as coping mechanisms. These include internal and

external stimuli, coping processes which result in a coping behavior.

In this study, the assumption made was that before parents decide to disclose their HIV status to

their children, they would undergo a process of stimulation which happens when they get to

know their HIV status. This sets in the two internal cognator coping processes which are:

regulator-coping process inside the parents and cognator-emotions like data processing and

judgment. Then this would later be translated in to a coping behavior. This would be affected by

a number of factors such as perceived outcome of their action, stigma, benefits and the feasibility

of carrying out this action. Depending on which action they took, this would be the adaptive

behavior displaced as ineffective or effective adaptation meaning the decision to disclose or not

to disclose. The feedback process depends on the parents’ adaptation, information is sent back to

the stimuli more especially for parents with ineffective adaptation.

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2.6 Figure: 1 Conceptual Framework.

Stimuli: Parents
+HIV status

Coping mechanism

Cognator-emotions,
Regulator-coping perceptions, data
process inside the processing and judgment
parents.

Coping behavior

Physiological Self image-mental Role behavior Mutual


i.e. basic needs integrity social integrity dependency

Adaptation

Ineffective Effective
adaptation adaptation
i.e. non i.e.
disclosure disclosure.

FEED BACK

12
CHAPTER THREE:

3.0 METHODOLOGY

3.1 Study area

The study was carried out in Soroti regional referral hospital (SRRH), in the pediatric infectious

disease clinic (PIDC). SRRH is the main government Referral facility for the mid eastern region

of Uganda. It serves 6 districts, Soroti, Katakwi, Kaberimaido, Amuria, Kumi and Bukedea

districts and its located 320kmNortheast of Kampala. PIDC Soroti cares mainly for children

with HIV/AIDS up to age of 17years and their parents’; also it runs a clinic for children with

chronic illnesses like sickle cells, diabetes, heart diseases. PIDC is supported by joint clinical

research center (JCRC) in collaboration with ministry of health. The activities carried out in the

clinic are counseling and testing, provision of ARVS, monitoring of clients CD4count, viral load

and clinical services. These Services are offered three days in a week that is every Monday,

Wednesday and Friday.

3.2 Research design

The research was qualitative descriptive design on parents’ perception towards disclosure of HIV

positive status to their children. This method was chosen because it offers a straight description

of the phenomenon desired (Sandelowiski, 2000). Furthermore, qualitative descriptive research

simply focuses on describing phenomenon in a holistic manner and it may not necessarily follow

the usual tradition of qualitative studies (Polit & Beck 2006).

3.3 Study participants.

Parents who had tested HIV positive and had a child or children.

13
3.4 Sampling method.

A purposive sampling method was used to select the participants in this study. This method was

preferred because it selects individuals who have been exposed to the phenomenon of interest,

therefore allows the researchers understanding of the phenomenon (Polit & Beck, 2006). The

study was based on the parents being HIV positive in order to explore their perception towards

disclosure of their status to the children.

3. 5 Sample size

The sample size for qualitative descriptive study is often smaller than in other qualitative designs

(Magilvy & Thomas, 2009). Being a qualitative study, this was determined by saturation

point, the point when no new data emerged with further sampling (Polit & Hungler,

1999). Ten (10) parents were enrolled from the PIDC clinic into the study.

3.6 Inclusion criteria

Parents who had tested positive for the HIV virus and had a child or children that were living

together with them as a household.

3.7 Exclusion criteria

Parents who were not staying together with their children at the time of conducting this study.

14
3.8 Data generation tool

Data was collected using an in-depth interview guide, in which the researcher and the

participants were full co-participants. Open ended questions were used in a face- to-face

unstructured interview lasting 45 minutes to one hour using a tape recorder. The researcher used

the participant’s subjective information as revealed in the conversation with the aim of

elucidating the participants’ perception without imposing his/her own views (Polit & Beck,

2006).

3.9 Data generation procedure

Participants were identified during the clinic day by the researcher on arrival as they came to be

registered, and retrieve their files at reception. Then a verbal and written informed consent was

obtained; only those who agree to be in the study were booked for an interview. This was

performed at the end when the participant had finished with his/her medical treatment as she/he

planned to go back home. The interview was carried out in a counseling room which was quiet

for privacy and the verbatim were tape recorded with the participants’ permission.

3.10 Rigors of the research

The criteria thought of as the ‘gold standard’ for qualitative researchers are those outlined by

Lincoln & Guba (1985). The following are suggested criteria for establishing the trustworthiness

of qualitative data; credibility, dependability and conformability.

Credibility

This has been described as the truth of findings as judged by participants and others.

15
According to Lincoln & Guba (1985), this can be achieved by one of the suggested techniques

recommended such as prolonged engagement and persistent observation. Here it involves

investing sufficient time in data collection to have an in-depth understanding of the phenomena.

In this study participants, were provided enough time during the interview to exhaust all their

perceptions about disclosure and the interview guide was translated in the local language for the

parents to understand better and give relevant information.

Transferability

According to Lincoln & Guba’s (1985), they defined transferability as the extent to which the

findings from the data can be transferred to other settings. This was achieved by providing a

thick detailed descriptive of the sampling and research design to enable someone interested in

making a transfer to reach a conclusion about the transfer that can be used as a possibility.

Dependability

In qualitative data this refers to data stability over time and condition.

This was achieved by audit ability where by an audit trail to emergence of the categories and

themes was provided so that future researcher can follow through and come to the same

conclusions. Also the demographic details have been included.

Confirm ability

This refers to the objectivity or neutrality of the data. Once dependability, transferability and

credibility are achieved then conformability was achieved (Lincoln & Guba, 1985)

16
3.11 Data analysis

Qualitative content analysis is the analysis strategy of choice in qualitative descriptive studies.

Qualitative content analysis is a dynamic form of analysis of verbal and visual data that is

oriented toward summarizing the informational contents of that data ( Altheide, 1987; Morgan,

1993). The goal of descriptive qualitative analysis is to provide a rich straight description of the

event in study; this means that the researcher stays closer to data. It involves a low-inference

interpretation meaning that even though description is the aim, interpretation is always present.

The descriptions depend on the perceptions, inclinations, sensitivities and sensibilities of the

describers (Neergaard, et al.2009). In this study a qualitative descriptive data analysis package

will be used as described below by (Thomas, 2006).

• Reading and rereading participants’ descriptions to acquire general meaning.

• Extracting significant statements to generate information pertaining directly to the

phenomenon being studied

• The researcher identifies the repeated phrases of the participants found within and across

individual texts.

• Then categorizes similar code words and phrases that have been grouped and regrouped

together to include relevant concepts.

• The categories are resorted into groups of similar content and meaning.

• Finally themes are identified by reviewing and organizing the categories into common

topics

17
3.12 Ethical consideration

Approval was sought from Department of Nursing (DON), Mbarara University of Science and

Technology (MUST). An introductory letter was taken to the medical superintendent SRRH and

the PIDC in-charge seeking permission to conduct the data collection phase of the study. A

written consent was given to each participant before starting the interview. Confidentiality was

ensured by using codes instead of participant’s names. The participants were reminded that they

had a right to withdraw from the study at any time they wished without affecting their medical

treatment at the clinic.

3.13 Limitations

Parents who participate in the study were got during the clinic services and by the time of the

study most of them were tired and others declined the study. Also using the clinic limited other

participants who did not come and could have also contributed to the study.

3.14 Dissemination

A copy of the study findings will be presented to the DON MUST and the main library MUST.

Another copy will be given to SRRH where the study was carried out from. Finally, the study

findings will also be presented during the annual research dissemination conference at MUST,

nursing conferences.

18
CHAPTER FOUR

4.0 DATA ANALYSIS

4.1 Introduction

This chapter contains themes and the categories derived from responses of the participants that

were interviewed during the study regarding their opinion on parents disclosing their HIV status

to their children. The data was analyzed and emerging categories generated that accurately and

meaningfully reflected the perception of the parents towards the disclosure of HIV positive status

to their children.

4.2. Demographic characteristics of the participants

A total of ten (10) parents who had tested HIV positive and had a child or children in PIDC

clinic at SRRH participated in the study and they had age range of 30-51 years with a mean age

of 39 years. Most of the participants were Protestants and iteso, the indigenous tribe which

dominated the study. The participants had between two (2) to seven (7) children with the mean

number of children as 5 children, majority were female; the highest level of education of

participants was tertiary institution. Most of the participants were widowed or had separated

from first marriage. Participants were given codes from p1 to p10.

4.3. Results.

When parents were asked to describe how they felt regarding disclosing their HIV status to their

children, what difficulties were underlying their disclosure and what was their opinion regarding

this, four themes emerged these are: Imperative, Reactions, Challenging and collaborative.

19
4.3.1 Theme 1: Imperative

This theme emerged from three categories

Category 1: important to disclose

Some parents felt it was important to disclose their status to their children, as they thought it’s

essential and would have a great impact on their children as depicted by the following phrases

during the interview.

P1: “to me I feel it’s important to tell children”………….. “Discuss together knowing the

importance of telling children.” (Male, 40 years).

P5: “My opinion is that it’s important to sit with children and tell them so that they work hard

at school and get their jobs.”(Femal ,32 years).

Category 2: Responsibility to disclose.

Some parents took it as a responsibility to disclose their HIV status and not overwhelmingly to

be taken up by the disease when their children are not aware and they strongly believed it was

the duty of a responsible parent to tell their children as one of the participants narrated:

P2:“I am a social worker I took it as a responsibility to tell my children because I did not want

the sickness to take me by surprise” ……So for me I believe it is the responsibility of the

responsible parent to tell a child about his disease not only HIV/AIDS” (Male, 51 years)

20
Category 3: Good to disclose.

Other parents considered it good to disclose their status to their children as narrated by the

following participants.

P10: “I think it’s good to tell them…….” (Female, 31 years).

While another participant also thought it was good to disclose parental status to children as it

would be beneficial when advising older children on behavior as evidenced by this phrase,

P7: “it’s good to tell them and especially older children are advised to avoid bad behavior”

(Female, 40 years).

4.3.2. Theme 2: Reactions

This theme emerged from two categories

Category 1: Scared of children’s response.

All most all the parents were scared of the children’s response upon parents’ disclosing to them

their HIV status. Most of the fear to disclose was being related to death as some participants said,

P7: “the child will feel pain that mummy and daddy are sick and they will die living us to

suffer”. (Female, 40 years).

P4: “they ask me when their father will come back, if I tell I am also affected I really don’t know

now what will come in their mind …I said let me first leave because they will definitely know

anyone with HIV definitely die after some time” (Female, 30 years).

While other parents felt it would be a source of worry to children as revealed by the following

participants.

21
P5: “if I tell them they will start worrying” (Female, 32 years).

P6: “they become worried saying that their parents have silimu and they feel other children will

be laughing at them” (Female, 37 years).

Category 2: Fear to disclose

Other participants had fear within themselves to disclose their status to their children as was

narrated by these participants

P5:”Me I fear telling them” (Female, 32 years).

P4: “now when they chase them because of school fees they come back crying so I fear”

(Female, 30 years).

4.3.3. Theme 3: collaborative

This theme was derived from 2 categories.

Category 1: collective effort.

Most of the parents perceived that to disclose their status to their children, it needs collective

efforts from the community and health workers to ease disclosure as showed in the following

statements.

P9: “if the nurses would come to our homes then talk to all of us at home then it can be easy to

disclose to them”(Female, 49 years).

22
P1:“the nurses should be tell.ing them every clinic day”…… “Medical workers liaise with the

community based programs especially by using people known in that area.” (Male, 40 years).

While others felt they could not carry out the disclosure alone:

P3: “so for me I cannot do it alone” (Female, 33 years).

Category 2: Variance with partner disclosure

Some parents had variation with partners on disclosure and they thought they needed

collaborative support to disclose their status to their children as narrated by some of participants.

p3: “I cannot suggest any thing because my husband does not want them to know

completely”…... otherwise for me I could tell them so that they plan ahead” (Female, 33 years).

P6: “Even now their father is admitted in hospital but doesn’t want us to tell them”. (Female 37

years).

4.3.4. Theme 4: Challenging

The above theme emerged from 2 categories

Category 1: Hard to disclose

Some parents narrated their perception towards disclosing their HIV status to their children being

a hard task to perform as expressed by the following participants:

P1: “It’s hard because for the first time they breakdown thinking that you’re going to die soon”

(Male, 40 years).

Others felt it was really difficult to disclose especially if they felt they had no point to start from.

23
P4: “I can open up and tell them but telling them from nowhere it is difficult” (Female, 30

years).

Category 2: Distressing situation

Some parents perceived disclosing their HIV status to children as being a distressing situation

with challenges attached as expressed by the following participants;

p4: “My challenge is if I tell them they will say even mummy is going to leave us to suffer”

(Female, 30 yes).

p5: “Then another day after their father’s death they asked me that mummy now you will also

die and leave us to suffer.” (Female, 32 years).

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CHAPTER FIVE

5.0 DISCUSSION OF RESULTS

This study found out that parents had deferring perceptions towards disclosing their HIV status

to their children. These perceptions were grouped into four main themes, imperative, reaction,

challenging and collaborative perceptions.

Imperative was one of the themes in which some parents felt it was important to disclose their

status to their children, as they thought it was essential and would have a great impact on their

children. This agrees with Armistead & forehand, (1995); Zeya’s & Romano, (1995) in their

studies on adolescent and parental death from AIDS illustrated that parents disclose their HIV

status to their children because it is thought that both parents and children can benefit from

disclosure. On the other hand, American Academy of pediatrics guidelines (1999) stressed that

some of the benefits of disclosure of status include; improved adherence, enhanced access to

support services, open family relationship, better long term health and emotional well-being in

children.

Certain parents took it as a responsibility to disclose their HIV status and not overwhelmingly to

be taken up by the disease when their children are not aware and they strongly believed it was

the duty of a responsible parent to tell their children.

While other parents also thought it was good to disclose parental status to children as it would be

beneficial when advising older children on behavior .This was also observed in another study of

25
Kennedy, et al (2010) concerning the parents’ disclosure of their HIV infection to their Children

the context of the family. They noted that Parents sometimes reported that

disclosure was not as negative as they feared, and after disclosure there was increased closeness

in the family.

Perceived children’s reactions was another, almost all the parents were scared of the children’s

response upon parents’ disclosing to them their HIV status. This resulted from parents not

knowing how to address the issue of HIV, and that the children would “start worrying." This

concurs with Kennedy, et al (2010) in their findings which suggested that parents were more

aware of the negative aspects of disclosure than the negative aspects of nondisclosure, and they

over-estimate the effects of disclosure and children’s reactions. This implies that, there are a

number of conceivable costs to disclosure like, worrying, pain and shock. Some parents like

mothers express concern that worrying over their illness may result in poor psychosocial

adjustment on the part of the child.

Additionally, some children have difficulty reconciling their negative stereotypes of people who

become HIV-infected with their image of the parent as a virtuous person. (Black, 1993) reported

that the decision about disclosure can result in high levels of tension and stress for parents; hence

many parents choose not to tell their young children about their HIV status due to worry that the

children will not be able to handle the news.

Other participants had fear within themselves to disclose their status to their children. This

corresponds to related studies of American Academy of Pediatrics (1999) that in disclosure of

illness to children, HIV positive parents often felt shame or guilt to pass on their HIV infection

with all its social and medical problems to their children.

26
Collaborative effort, a theme that emerged describing parents who perceived that to disclose their

status to their children needed collective efforts from the community and health workers to ease

disclosure. This was mainly observed among female participants who felt they could not do the

disclosure alone. Arguably it disagrees with Armistead et al, (2007) who found out in their study

that mothers disclosed more than fathers and more to their daughters than sons, also older

children were more likely to receive a disclosure. But again Kennedy, et al (2010) in their

findings revealed that to make informed decisions about how to disclose to their own children,

parents would benefit from understanding how the disclosure process proceeded in other

families. Also clinicians would be able to use such information to counsel parents and to support

children as they fulfilled their important role in helping families cope with parental HIV

infection. Therefore support for any parent to disclose their status to their children is essential.

Some parents had variation with partners on disclosure and they thought they needed

collaborative support to disclose their status to their children. This was also observed among

female participants, and recognizing that some of the barriers women face in sharing HIV test

results have their roots in underlying gender norms and social attitudes about HIV/AIDS. This

coincides with WHO (2004) recommendation on HIV status disclosure that community-based

programs that seek to change gender norms and improve communication between partners and

spouses, could also lead to an increase in disclosure and better outcomes for women and

families.

Challenging was another theme in which some parents narrated their perception towards

disclosing their HIV status being hard and others felt it was really difficult to disclose

especially starting from nowhere. Some parents perceived disclosing their HIV status to children

as a distressing situation. This has created challenges for parents to decide how and when to

27
disclose their HIV status to their children. Nam, et al (2009) in their study on discussing matters

of sexual health with children established that it was difficult for parents to discuss a topic on

HIV, general sexual health issues or disclosure of their own HIV status with children. Also Lee

& Rotheram-barus’ (2002) argued that disclosures were more significantly related to parents’

stressful life events and family life events. The rates were associated with parents’ perceptions of

the HIV-related stigmatization of their children. (Murphy, et al, 2001) added that parents find

themselves in a dilemma because they must also weigh the benefits of disclosure against the risk

that sharing the information might make the family vulnerable through the child’s disclosure to

others. This means that most parents preferably wait to disclose until a stressful event occurs.

And in this study it was observed that a few of the parents who had disclosed were widowed. So

may be the stressful life of being a widow could have indirectly forced them to disclose their

status to their children.

28
CHAPTER SIX

6.0. CONCLUSION AND RECOMMENDATIONS

6.1: Conclusion

This qualitative descriptive study of parents’ perception towards disclosure of their HIV status to

their children revealed mixed perceptions parents have towards it. Although some parents knew

the benefits of disclosure they still expressed it to be hard and difficult to disclose and almost all

the participants had negative perceptions of children’s reaction if told their parents HIV status.

Disclosure is sharing information with others that they would not know or discover and it is

essential as it contributes to improvement of quality of life for HIV infected persons as they open

up to social support, good adherence among others.

Therefore answering the question “what is the perception of parents towards the disclosure of

HIV status to their children? It was found that parents’ perception towards disclosure was an

important or imperative action that ought to be a collaborative activity of both community and

healthcare providers but is challenging especially when children’s reactions to disclosure are

considered.

6.2 Recommendations

Nursing practice:

In this study, some parents said that they really wanted to disclose to their children but they did

not know how to start. They asked if health workers would help them especially when they come

29
to the healthcare facility. So nurses who are involved in the care of HIV positive patients need to

identity such a parent’s need and strategically help the parent to disclose.

Nursing administration

A policy on steps of disclosure of HIV status to children needs to be formulated and

communicated to parents to help them to initiate disclosure. Many parents said that they did not

know how to say or where to start from. More funds need to be allocated to community based

counseling and home based care of families where one or both parents have tested positive so

that challenges or issues with disclosure can be identified and dealt with immediately

Nursing education

Continuous Nursing Education on advantages, challenges and outcomes of disclosure should be

done on a routine basis for nurses handling. Specific training of nurses or counselors need to be

done for handling families who have been affected with HIV because these have many issues

that can be detrimental to the health, wealth and wellbeing of individuals in these families of

which failure to disclose is among them.

Future research

In this study, parents’ perceptions were identified, but their children’s perception about their

status was not dwelt with. So a research needs to be done among children to identify their

30
perception about their parents’ status. So that perceptions like worrying about how the children

would react would actually be brought to light. Another study could be done to understand the

appropriate age of children when disclosure can be done.

31
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35
APPENDIX A: Interview guide

This constructed guide will be used for a study to explore parents’ perception towards disclosure

of HIV status to their children.

Demographic characteristics

1) Code number …………………………….

2) Age ……………………………………………….

3) Religion [tick]

Catholic [ ] Protestant [ ]

Moslem [ ] others specify………......................

4) Tribe ………………………………………………………………………...

5) Marital status

Married [ ]

Single [ ]

Widowed/separated /divorced [ ]

Others specify ……………………………………………………………

6) Number of children……………………………………….. [ ]

7) Occupation ……………………………………………………..

Level of education ………………………………………………………

Please describe how you feel regarding disclosing your HIV status to your children?

What are the difficulties hindering your disclosure and what is your opinion about it.

Thank you for your participation

36
APPENDIX B: Consent Form

Iam AKELLO SAFINA, a Nursing student at Mbarara University of science and technology. Am

carrying out a study on parents perception towards disclosure of HIV status to their children in

SRRH .the study will provide information that will help nurses on how to support parents to

disclose their status to their children. The participation in this study my take about 45minutes to

1hour.In the study you are requested to respond to the question asked on disclosure of your status

to your children and it will be Audio taped.

Your participation is voluntary and you have a right to withdraw at any time and your care at the

hospital will not be affected at all.

Your identity shall not be revealed and all information will be coded so that it will not be linked

to your name and any information given shall not be shared with anybody without your consent.

For any further information need please contact the researcher on telephone number 0712940176

or 0701940176

I have read this consent form and voluntarily consent to participate in the study.

Participant’s signature/thumbprint Date

………………………………. ……………………

Researcher’s signature Date

……………………………… ……………………

37
APPENDIX C: Table of themes and categories

Category Themes

Important to disclose Imperative:

Responsibility to disclose

Good to disclose

Hard to disclose Challenging:

Distressing situation

Scared of children’s response Reaction:

Fear to disclose

Collective effort Collaborative

Variance with partner on disclosure

38