Disclosure of HIV/AIDS diagnosis to HIV-infected children in Thailand

Transcription

1 doi: /j x ORIGINAL ARTICLE Disclosure of HIV/AIDS diagnosis to HIV-infected children in Thailand Peninnah Oberdorfer, 1 Thanyawee Puthanakit, 1 Orawan Louthrenoo, 1 Chawanun Charnsil, 2 Virat Sirisanthana 1 and Thira Sirisanthana 3 Departments of 1 Paediatrics and 2 Psychiatry, Faculty of Medicine and 3 The Research Institute for Health Sciences, Chiang Mai University, Chiang Mai, Thailand Background: With the availability of highly active antiretroviral therapy, more HIV-infected children have lived longer. Many children are at the age that they should know the diagnosis. Aim: To identify the prevalence and patterns of disclosure of HIV/AIDS diagnosis to HIV-infected children. Methods: A cross-sectional study was conducted among 103 main care givers of HIV-infected children aged 6 years who received highly active antiretroviral therapy at Chiang Mai University and Sanpatong district hospitals, northern Thailand. Results: One-third (30.1%) of the children knew their HIV/AIDS status at an average age of 9.2 years. The care givers understanding of knowing did not always mean that the children were told the name of HIV or AIDS. Many of those care givers (84.3%) who reported that the child did not know their diagnosis had inaccurately explained to the child that he or she had some kind of disease such as allergy, lung, or liver disease. The most common reason for non-disclosure was the fear that disclosure might have negative psychological consequences to the child (53.4%). Almost all (88.7%) agreed that they should tell the children their diagnosis in the future but half needed health-care providers to help them at the event. Conclusion: There is a need for the development of disclosure guide-lines and models for health-care providers and care givers as there was a high rate of inaccurate disclosure and, in addition, care givers expressed their need for assistance from health-care providers for the future disclosure. Key words: AIDS; children; diagnosis; disclosure; HIV. With the availability of highly active antiretroviral therapy (HAART), more HIV-infected children have lived longer. In the USA, the average age of children born to HIV-infected mothers was reported to range from 8.6 to 13 years, and 36 61% of those children were reported to live longer than 13 years. 1 More children are at the age (9 12 years) that they should know their diagnosis. 2 The prevalence of disclosure among school-aged HIV-infected children varies widely. Several studies among HIV-infected children aged 5 years and older reported disclosure rates that range from 17% to 100%. 3 At present, there has been a variety of patterns for disclosure of HIV/ AIDS status. Partial or inaccurate disclosure appeared to be a com- Key Points 1 One-third of the children knew their HIV/AIDS status at an average age of 9.2 years. 2 Most care givers inaccurately explained to the child about HIV/AIDS. 3 The development of disclosure guidelines for healthcare providers and care givers is warranted. Correspondence: Dr Peninnah Oberdorfer, Division of Infectious Diseases, Department of Paediatrics, Faculty of Medicine, Chiang Mai University, Chiang Mai 50200, Thailand. Fax: ; aoberdor@mail.med.cmu.ac.th Accepted for publication 9 January mon method used by care givers. Funck-Brentano et al. showed that partial disclosure was observed in 40% of the children, and full disclosure of the diagnosis was given to 17% of children. 4 Wiener et al. found that up to 35% of care givers partially or deceivingly disclosed the HIV status to their child. 2 Several studies have shown that disclosure benefits both children and their care givers. Children who know their diagnosis were shown to have a better adjustment to their chronic illness, a higher selfesteem and less psychological distress. 5 Their care givers likewise reported less psychological distress 5 and lower rates of depression. 6 Studies showed that open communication enhances family functioning and adaptation. 7 Moreover, disclosure has been shown to have important implications for the success of HAART treatment. 8,9 Furthermore, in the context of sex education, disclosure becomes an important issue for children who have reached an age at which they begin to explore their sexuality. 9 In Thailand, since the commencement of the national antiretroviral drug access program, no data are available concerning the patterns of disclosure of HIV/AIDS diagnosis to HIV-infected children. Neither do any disclosure guidelines exist. Methods Setting and Sample A cross-sectional study was conducted among care givers of HIVinfected children aged 6 years and older who receive HAART at the Journal of Paediatrics and Child Health 42 (2006)

2 Disclosure of HIV/AIDS diagnosis to children P Oberdorfer et al. infectious disease clinics of the Chiang Mai University hospital and Sanpatong district hospital, northern Thailand. Those children who were residing in orphanages and homes for HIV-infected children were excluded from the study as they did not have specific main care givers. The study and survey instrument were approved by the Human Research Ethics Committee of the Chiang Mai University. Procedures Information describing the study objectives was given to each care giver. Care givers were asked by a trained nurse to answer a semistructured questionnaire when they visited the infectious disease clinic. The study was conducted between October 2003 and April Measures Care givers were asked to provide details regarding their age, sex, highest level of education, family members, financial status and the birth rank of the child. Data concerning the children s age, CD4 T-cell level, treatment regimen and duration of treatment were obtained from the medical records. Data analysis was performed using the statistical program SPSS. 10 Definitions used in this study Disclosure refers to the main care giver s perception of having told the children about the HIV/AIDS diagnosis, regardless of what they told the child The knowing group refers to the group of children whose main care givers perceived that the children already knew their HIV/ AIDS diagnosis The non-knowing group refers to the group of children whose main care givers perceived that the children have not yet known their HIV/AIDS diagnosis The questionnaire included items shown in Table 1. Results Sample The main care givers of 103 children receiving HAART were interviewed. Of them 70% were from the Chiang Mai University hospital. Demographics Care givers The main care givers were grandparents (34.9%), biological parents (29.1%) and relatives (36%). Their average age was 44.3 years (range years; standard deviation (SD) 11.34). The highest level of education of more than half (64.6%) was that of a primary school, and 6.1% had never attended any school. Half of them (51.5%) worked as labourers and a sixth (16.8%) were not working (Table 2). Children All children (average age 9.5 years, range 6 16 years; 61.2% boys) received HAART for an average of 33 weeks (range 0 136). Approximately 56% received a nevirapine-based regimen and 39% received an efavirenz-based regimen. The rest received a protease inhibitor combination (4.6%). At the study time, their average most recent CD4 T-cell level was 13.6% (SD 7.6, range 0 35%). Most of them were the first child (78.2%), and almost all (92.9%) were studying in school. Three quarters (73.4%) were reported having lost their mother and 71% having lost their father (Table 3). Most children (73.4%) lived in families consisting of three to five members, and approximately twothirds (68.1%) were the only child in the family. Patterns of disclosure Knowing group Based on care giver s report, one-third (30.1%) of the children already knew their HIV/AIDS status. Their average age was 9.2 years Table 1 Study questionnaire Measures No. items Type 1 Whether the children knew their HIV/AIDS status 1 Yes/no 2 When care givers reported that the children knew their HIV/AIDS status, they were asked: The age of the children when they knew 1 Open Who told the children 1 Open The reasons that care givers told the children that they had HIV/AIDS 1 Open Details of how the care givers told the children 4 Open Responses of the children when they were told of their HIV/AIDS status 1 Open The advantages and disadvantages of disclosing HIV/AIDS status to this child 2 Open What they would advise others about the disclosure technique 1 Open 3 When care givers reported that the children did not yet know their HIV/AIDS status, they were asked: The reasons for not telling 1 Open Whether they would tell the children in the future and at which age 2 Open What they explained about the illness to the children previously 1 Open How they would want the disclosure event to occur 1 Open 284 Journal of Paediatrics and Child Health 42 (2006)

3 P Oberdorfer et al. Disclosure of HIV/AIDS diagnosis to children Table 2 Care giver and family characteristics in knowing and nonknowing group Items Knowing diagnosis % (n) Yes (n = 31) No (n = 72) P-value Relationship to the child Biological mother 29.0 (9) 15.3 (11) Biological father 0.0 (0) 13.9 (10) 0.040* Others 71.0 (22) 70.8 (51) Age (years) < (4) 6.9 (5) (11) 30.6 (22) (7) 33.3 (24) (5) 18.1 (13) > (4) 11.1 (8) Highest level of education Less than primary school 82.1 (23) 74.6 (47) Higher than primary school 17.9 (5) 25.4 (16) Occupation No work 13.3 (4) 18.3 (13) Labour work including agriculture 66.7 (20) 64.8 (46) Government officers 10.0 (3) 4.2 (3) Private business 10.0 (3) 12.7 (9) Financial problem Yes 61.3 (19) 35.7 (25) 0.017* No 38.7 (12) 64.3 (45) *P < Numbers vary because of missing data; not every item was answered by respondents. (SD 3.0, range 4 15 years) when they knew their HIV/AIDS status. The persons who told the children that they had HIV/AIDS were reported to be the grandparents (32.2%), health-care providers (29%), mothers (16.3%), school friends (16.1%) and relatives (6.4%). The average age of children who were told their status either by health-care providers or care givers was 9.4 years (SD = 3.16). Care givers cited various reasons for why the children were told their status: such as, because school friends discriminated them (32%), they were sick (44%), they had to commence HAART (16%) and they did not adhere to HAART (8%). When we asked those care givers (n = 17) who reported that the child knew their HIV/AIDS status from them, half (49.3%) reported that they told the children directly that they had AIDS, whereas 3.6% addressed that they had an HIV-infection but not AIDS. Approximately 26% told the children that they had some infections and had to take medicine, 10.7% told the children that they had the same infection as their mother and 10.4% only told the children that they were very sick (without mentioning the name of disease) and had to see the physician regularly. Most disclosure events occurred when the children were sick and were alone with the care givers (89.2%). Others occurred after one of the parents had died (3.6%), the children unexpectedly saw the blood test result (3.6%) and after their friends had derided them (3.6%). The most common response of the children, when they were told of their HIV/AID status, was that of a Table 3 Child characteristics in knowing and non-knowing group Items Knowing diagnosis % (n) P-value quiet acceptance (71%). Other responses were sadness (16%), anger (10%) and rebellion (3%). When care givers were asked what they thought were advantages of disclosing the HIV/AIDS status to children, they reported that after knowing their status the children might adhere to HAART and look after themselves well (78.2%), be more relaxed (15.6%) and know the facts about their illness (6.2%). Concerning disadvantages of disclosing, care givers however, thought that the children might become depressed (37.5%) and be disgusted (18.8%). However, 31.3% reported that they could not find any disadvantages of disclosing and 12.4% were not sure about this. When asked what they would advise others concerning how to disclose, 48% advised that care givers should gradually disclose the HIV/AIDS status to the children by telling them about the disease, and encouraging them, but 21.6% advised that the child should be told promptly. The remainders (30.4%) were not sure and did not know about this. Non-knowing group Yes (n = 31) No (n = 72) Sex Male 58.1 (18) 62.5 (45) Female 41.9 (13) 31.5 (27) Age (years) (13) 68.1 (49) 0.013* > (18) 31.9 (23) Most recent CD4 T-cell level (%) (13) 66.2 (48) 0.019* > (18) 33.8 (24) Duration of HAART (weeks) < (7) 34.7 (25) (8) 11.1 (8) (3) 12.5 (9) (7) 16.7 (12) > (6) 25.0 (18) Father status Alive 20.0 (6) 38.0 (27) Dead 80.0 (24) 62.0 (44) Mother status Alive 30.0 (9) 23.1 (15) Dead 70.0 (21) 76.9 (54) *P < Numbers vary because of missing data; not every item was answered by respondents. HAART, highly active antiretroviral therapy. The care givers major reasons for delaying disclosure were worries that disclosure would have negative emotional consequences for the children (such as distress, depression, anxiety and isolation) (53.4%), they were too young to be informed (28.1%) and consequently would get discriminated (12.7%). Few were afraid that the child might not be able to keep the secret (5.8%). When asked whether they had previously explained about the illness to the child, approximately one-third (29.2%) reported that they had never explained anything related to HIV/AIDS to the child, but two-thirds Journal of Paediatrics and Child Health 42 (2006)

4 Disclosure of HIV/AIDS diagnosis to children P Oberdorfer et al. (70.8%) reported that they explained something to the child, such as that they had other diseases (e.g. allergy, liver disease, lung infection, paleness, pustules, severe diseases). The remaining care givers (15.7%) stated that they only told the children to take medicine and to look after themselves, without explaining to them that they had a disease. Most of them (88.7%) however, agreed that they should disclose the HIV/AIDS status to the children when they were older (average age 13.6 years, SD 2.8, range 8 20 years). When asked how they would want the disclosure event to occur, 57% of care givers reported that they would like to be the one who discloses the HIV/ AIDS status to the child, and 43.0% reported that they needed the health-care provider to help them to tell the child about the status. When asked where the disclosure event should occur, 27.5% would like it to occur in the hospital, whereas 14.4% said that the event should take place in a secret place, like at home, in the bedroom. The remaining care givers (58.1%) did not express a preference for a certain place. When asked when disclosure should occur in regard to the children s health status, most (85.6%) mentioned that disclosure should take place at any time, regardless of the children s health status, 5.8% when the children are sick and 8.6% when the children are healthy. Predicting factors for knowing the diagnosis Children who were older than 10 years, had a CD4 T-cell level of more than 15%, whose care givers reported having financial problems and whose main care givers were not their biological fathers were more likely to know their diagnosis (P < 0.05) (Table 4). Discussion This study suggests that based on care givers views, one-third of Thai HIV-infected school children who are receiving HAART knew their diagnosis. Most children knew it from family members, and some from health-care providers and even school friends. However, the care givers understanding of knowing did not always mean that the children were told the name of the disease ( HIV or AIDS ) or informed about the particulars of the disease. In contrast, many of those care givers who reported that the child did not know about the disease had inaccurately explained to the child that he or she had some kind of disease such as allergy, lung, or liver disease. None of the children whose main care givers were their biological fathers knew their diagnosis. The most common reason why care givers did Table 4 Multivariate logistic regression results of predictive factors to the knowing of HIV/AIDS status among children Factor Odds ratio (95% confidence interval) P-value Age (more than 10 years) 1.8 ( ) Most recent CD4 T-cell level (>15%) 1.7 ( ) Financial problems (yes) 1.7 ( ) Father as main care givers (no) 1.2 ( ) not yet disclose the HIV/AIDS status to their child was fear that disclosure might have negative psychological or emotional consequences for the child. Almost all agreed that they should tell the children their diagnosis in the future, but half reported that they needed health-care providers to help them at the event. In regard to the perceived advantages of disclosure, most care givers reported that disclosure might help the children to adhere well to HAART. Care givers who reported that the children already knew that they had HIV/AIDS used various methods to tell them about their illness. Approximately half (47.1%) did not address the name HIV or AIDS at all during the disclosure session but told the children that they had some conditions based on their clinical symptoms. Some (10.7%) only told the children that they had a disease like their mother. A similar phenomenon has been identified in previous studies by Ledlie 7 and Funck-Brentano et al. 4 who reported that care givers used various methods of deception when telling the children about their illness, such as telling a lie, selectively telling some information and hiding the HIV status behind other conditions unrelated to HIV illness. A similar pattern of inaccurate disclosure occurred among care givers who reported that their children did not know their HIV/AIDS status and that they had never told them about the actual diagnosis. Approximately two-thirds (70.8%) yet told them something, such as that they suffered from some diseases either related to or not related to HIV infection (59.7%), or that they had to adhere to medication regularly (11.1%). Rather than an attempt to deceive the child, Thai care givers may see this as the first steps of a process that leads to full disclosure, and thus a legitimate disclosure pattern. However, it might also imply that Thai care givers lack knowledge about the benefits of disclosure and skills in telling the diagnosis to their children. This could partly be due to their overall low level of education, or that they have never been trained how to disclose the HIV status to the child. It might also reflect a deficiency in the Thai health-care system. In contrast to Western countries where recommendations and guide-lines for disclosure have been available for more than 5 years, 11 no such guide-lines exist yet in Thailand. Consequently, it may be the case that health-care providers are unsure as how to approach disclosure in the Thai setting and/or are not aware about its importance. Moreover, as HAART has become available for children in Thailand for only about 3 years, 12 health-care providers and public health authorities may have less experience with issues concerning the psychological and psychosocial aspects of long-term survivors of perinatally acquired HIV/AIDS infection, such as disclosure. It might be warranted that disclosure modules and guide-lines be developed to provide health-care providers as well as care givers with the knowledge and skills concerning disclosure. The findings of our study supported that of previous studies that identified older child age as a determining factor for the children s knowing about their diagnosis. In the study of Bor, all children who were 16 years old knew their HIV status whereas of those who were younger than 10 years only 37% knew their status. 13 Similarly, in the study of Cohen, 95% of children older than 10 years were aware of their status whereas only 30% of children aged 5 10 years knew about their diagnosis. 14 In agreement with the theory of child s cognitive understanding of illness, the age from 9 to 10 years and older is considered to be the best time for HIV-infected children to know about their sickness 286 Journal of Paediatrics and Child Health 42 (2006)

5 P Oberdorfer et al. Disclosure of HIV/AIDS diagnosis to children as at this age children can understand about the complex causes of illness and its consequences. 15 Moreover, the child consequently gains a better understanding about the need to adhere to the HAART regimen. This would provide an opportunity for parents and health-care providers to wean children from their dependence on parent supervision and support in taking medicine. Children should be trained to take their own responsibility in adherence to HAART as soon as they are able to comprehend the rationale of treatment. In our study we also found that more children whose care givers reported having financial problems knew their diagnosis than those whose care givers did not report to have any financial problems. These results are contradictory to those of a study by Wiener et al. who found that more children who knew their status came from families with a higher socio-economic status. 2 It appears that in Asian countries, particularly in Thailand the society is more rigidly stratified than in Western countries. Unlike in Western countries where public confession is more common even among people from the high society, in Asia the concept of not loosing face is commonly practised. 19,20 Therefore, it may be the case that families with a higher socio-economic status are less inclined to disclose the fact of HIV diagnosis to their children, as this is potentially threatening (given that the secret may leak) to the family s status quo. In contrast, care givers with a low socio-economic status may have less to lose, and are therefore more inclined to risk the potential threat to their status and stigmatisation. Interestingly, in our study we found that none of the children whose main care givers were their biological fathers knew their diagnosis. This finding has not been reported elsewhere. A similar phenomenon however, has been noted by Ledlie who reported that most children who knew their diagnosis were living with care givers who were not related to them whereas the majority of children who did not know the diagnosis were living with either biological parents or relatives. 7 Ledlie argued that this reluctance on part of biological parents to disclose the diagnosis to the children could result from an unwillingness to confront the fact of their own responsibilities in passing the infection onto the children. Likewise, the reason why particularly Thai men seem to be most reluctant to address disclosure of diagnosis to their own children could be that they feel most responsible for bringing the infection to the family. In contrast, Thai women may feel more inclined to talk about this issue as they perceive themselves not to be the cause for the presence of HIV infection in the family. Thai data concerning the most common transmission route of HIV has shown that in the last two decades, most Thai men were infected through sex workers and in turn passed it onto their wives. 21 This study is, to the best of our knowledge, the first large study that examines care givers perception of disclosure of HIV/AIDS diagnosis in Thailand. The sample represents a high degree of generalisability as it accounts for 10% of all children who received HAART in Thailand at the same registration period. The semi-structured design of the open questionnaire allowed care givers to share additional useful information. Only the main care giver were eligible to provide the information, as they were supposed to be the most appropriate persons who know best about the child as well as have the greatest impact on the child s health behaviour and adherence to HAART medicine. When we interpret the results of this study some limitations need to be considered. First, the study did not look at the family dynamics including the decision-making process in the family as there might be more other care givers and/or family members who were involved in disclosing the diagnosis to children. Given this, further research involving qualitative methods could overcome this limitation. Second, as HIV-infected children who were residing in orphanages and homes were excluded from the study, little is known about the specificity of disclosure practices within those institutions. Further studies should focus on this group of patients. Finally, we did not examine the issues concerning discrimination in schools; as some children knew the diagnosis from friends, future study may focus more on such matters. In conclusion, the findings of this study suggest that there is a need for the development of disclosure guide-lines and models for health-care providers and care givers as there was a high rate of inaccurate disclosure and moreover, care givers expressed their need for assistance from health-care providers for the future disclosure. Such guide-lines should in particular focus on care givers who have children aged 10 years and older and on biological fathers who act as the main care givers. Acknowledgements This study was supported by grants from the Ministry of Education and the Thailand Research Fund of the Royal Thai Government. Both funding organisations had no role in the design and conduct of the study; collection, management, analysis and interpretation of the data; and preparation, review, or approval of the manuscript. References 1 Kuhn L, Thomas P, Singh T, Tsai W. Long-term survival of children with human immunodeficiency virus infection in New York City: estimates from population-based surveillance data. Am. J. Epidemiol. 1998; 147: Wiener L, Battles H, Heilman N, Sigelman C, Pizzo P. Factors associated with disclosure of diagnosis to children with HIV/AIDS. Pediatr. AIDS HIV Infect. 1996; 7: Gerson AC, Joyner M, Fosarelli P et al. Disclosure of HIV diagnosis to children: when, where, why and how. J. Pediatr. Health Care 2001; 15: Funck-Brentano I, Costagliola D, Seibel N, Straub E, Tardieu M, Blanche S. Patterns of disclosure and perceptions of the human immunodeficiency virus in infected elementary school-age children. Arch. Pediatr. Adolesc. Med. 1997; 151: Bachanas PJ, Kullgren KA, Schwartz KS et al. Predictors of psychological adjustment in school-age children infected with HIV. J. Pediatr. Psychol. 2001; 26: Lipson M. Disclosure of diagnosis to children with human immunodeficiency virus or acquired immunodeficiency syndrome. J. Dev. Behav. Pediatr. 1994; 15: S Ledlie SW. Diagnosis disclosure by family caregivers to children who have perinatally acquired HIV disease: when the time comes. Nurs. Res. 1999; 48: Paterson DL, Swindells S, Mohr J et al. Adherence to protease inhibitor therapy and outcomes in patients with HIV infection. Ann. Intern. Med. 2000; 133: Chi-Ling L, Rosemary J-L. Disclosure of the diagnosis of HIV/AIDS to children born of HIV-infected mothers. AIDS Patient Care STDS 1999; 13: SPSS Inc. SPSS Base 11.5 for Windows User s Guide. Chicago, IL: SPSS Inc, American Academy of Pediatrics. Disclosure of illness status to children and adolescents with HIV infection. Pediatrics 1999; 103: Journal of Paediatrics and Child Health 42 (2006)

6 Disclosure of HIV/AIDS diagnosis to children P Oberdorfer et al. 12 World Health Organization. Scaling up Antiretroviral Therapy in Resource-Limited Settings: Treatment Guidelines for a Public Health Approach 2003 Revision. Geneva, Switzerland: WHO, Available from URL: arvrevision2003en.pdf [accessed 19 September 2004]. 13 Bor R. Disclosure (Vancouver conference review). AIDS Care 1996; 9: Cohen J, Reddington C, Jacobs D et al. School-related issues among HIVinfected children. Pediatrics 1997; 100: E8. 15 Schonfeld DJ. Child s cognitive understanding of illness. In: Lewis M, ed. Child and Adolescent Psychiatry: A Comprehensive Textbook, 3rd edn. Philadelphia: Lippincott Williams and Wilkins, 2002; Casey MK, Allen M, Emmers-Sommer T et al. When a celebrity contracts a disease: the example of Earvin Magic Johnson s announcement that he was HIV positive. J Health Commun. 2003; 8: Tesoriero J, Sorin M, Burrows K, LaChance-McCullough M. Harnessing the heightened public awareness of celebrity HIV disclosures: Magic and Cookie Johnson and HIV testing. AIDS Educ. Prev. 1995; 7: Brown BJ, Baranowski M, Kulig J, Stephenson J, Perry B. Searching for the Magic Johnson effect: AIDS, adolescents, and celebrity disclosure. Adolescence 1996; 31: Yoshioka MR, Schustack A. Disclosure of HIV status: cultural issues of Asian patients. AIDS Patient Care STDS 2001; 15: Weston HJ. Public honour, private shame and HIV: issues affecting sexual health service delivery in London s South Asian communities. Health Place 2003; 9: Ruxrungtham K, Phanuphak P. Update on HIV/AIDS in Thailand. J. Med. Assoc. Thai. 2001; 84: S Journal of Paediatrics and Child Health 42 (2006)