Parents Disclosure Safina
Transcript of Parents Disclosure Safina
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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 REQUIREMEN
FOR THE AWARD OF THE DEGREE OF BACHELORS OF NURSING SCIENCE OF MBARARA
UNIVERSITY OF SCIENCE AND TECHNOLOGY.
SUPERVISOR:
KABASINDI JOY KAMANYIRE.
JUNE, 2010
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DECLARATION
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.
Signedon this .day of.
Akello Safina
Supervisors Approval
This research work has been conducted under my supervision and my approval.
Signedon this..day of.
Kabasindi Joy Kamanyire
Supervisor.
Department of Nursing
Mbarara University of Science and Technology
P .O.Box 141
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DEDICATION
dedicate this work to my beloved husband Mr. Okiror Asuman who has tirelessly supported me morally, spiritu
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
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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.
extend my heartfelt gratitude to Ms Joy Kabasindi who led me from the beginning up to the end, all the patience an
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 suppo
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 Florenc
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 entir
ourse 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.
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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
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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 design
(Magilvy & Thomas, 2009). Being a qualitative study, this was determined by saturation point, th
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
.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
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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
CRC 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
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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 childrens reactions to disclosure are considered
first. Implications to Nursing practice, education and administration were highlighted. Also areas
of future research were identified.
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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; Zeyas & Romano, 1995).The choice to disclose or
conceal ones 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
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because they must also weigh the benefits of disclosure against the risk that sharing the
information might make the family vulnerable through the childs 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.
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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 ones 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.
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1.4 STUDY OBJECTIVES
1.4.1 General objective
To explore parents perception towards disclosure of their HIV positive status to their children
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CHAPTER TWO
2.0 LITERATURE REVIEW
Both primary and secondary sources were used to retrieve literature from several relevant studies
done in relation to parents 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 mothers status but most of the mothers
planned to disclose eventually (Shaffer et al, 2001).
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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 childs 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
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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 childrens 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.
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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 childrens 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.
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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 parents 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 Roys 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.
FEED BACK
Coping mechanism
Regulator-coping
process inside the
parents.
Cognator-emotions,
perceptions, data
processing and judgment
Coping behavior
Physiological
i.e. basicneeds
Self image-mental
integrityRole behavior
socialintegrity
Mutual
dependency
Adaptation
Effective
adaptation
i.e.
disclosure.
Ineffective
adaptation
i.e. non
disclosure
Stimuli: Parents
+HIV status
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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.
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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.
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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 participants 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.
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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 & Gubas (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)
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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
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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 participants 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.
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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.
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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 its
essential and would have a great impact on their children as depicted by the following phrases
during the interview.
P1: to me I feel its important to tell children.. Discuss together knowing the
importance of telling children. (Male, 40 years).
P5: My opinion is that its 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)
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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 its 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: its 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 childrens response.
All most all the parents were scared of the childrens 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 dont 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.
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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).
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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 doesnt 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: Its hard because for the first time they breakdown thinking that youre 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.
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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 fathers 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); Zeyas & 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
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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 childrens reactions was another, almost all the parents were scared of the childrens
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 childrens 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 childrenhave 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.
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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
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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 childs 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.
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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 childrens 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 childrens 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
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to the healthcare facility. So nurses who are involved in the care of HIV positive patients need to
identity such a parents 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 childrens perception about their
status was not dwelt with. So a research needs to be done among children to identify their
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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.
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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
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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.
Participants signature/thumbprint Date
.
Researchers signature Date
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APPENDIX C: Table of themes and categories
Category Themes
Important to disclose
Responsibility to disclose
Good to disclose
Imperative:
Hard to disclose
Distressing situation
Challenging:
Scared of childrens response
Fear to disclose
Reaction:
Collective effort
Variance with partner on disclosure
Collaborative