افشای اچ آی وی و بحث در مورد سوگ و داغداری با کودکان شونا: مقایسه بین کارکنان مراقبت های بهداشتی و اعضای جامعه در شرق زیمبابوه

Abstract Research in HIV-related counseling for African children has concentrated on urban tertiary hospitals, but most children have their first health care encounter at a rural primary health care center. This study investigated perceptions about the acceptability of disclosing the parents’ or child's HIV status to a child and talking about grief with children, as well as the preferred time, type and setting for HIV disclosure. An anonymous survey was taken from 64 primary health care workers and 131 community members from rural Eastern Zimbabwe. The results expressed a high need and desire for such communications and should be interpreted against a background of high perceived confidence to talk about grief with adults and a high degree of familiarity with child bereavement and foster care. The participants preferred that partial disclosure occurs from the age of 10.8 (±4.2) years and full disclosure from the age of 14.4 (±4.5) years. Compared to community members, health care workers were significantly more open to full disclosure and disclosure at a younger age but were slightly less open to discussing grief. The different preferred combinations of persons to initiate such communications included a health care worker in up to 56% of the responses and a family member in up to 52%. The most commonly preferred family members were father's sister (up to 37%) and grandmother (up to 40%) rather than the partner (up to 15%). Southern African family dynamics may hinder a mother initiating HIV disclosure and discussions about grief, even though she is traditionally present during HIV diagnosis, counseling and health education. A more culturally adapted approach than the standard Western ‘couple approach’ may thus be required. Consequently, counseling training models may need to be adapted. Further research into empowering mothers to involve significant members from the extended family may be highly beneficial.

Introduction Over the past decades courses in voluntary counseling and testing for health care workers from resource-limited settings paid little attention to HIV disclosure to HIV-infected children. Limited access to pediatric HIV/AIDS treatment resulted in most HIV-infected children dying before their fifth birthday. Furthermore, delayed HIV diagnosis in children often resulted in discussions about death and grief being more appropriate than HIV disclosure (Spira et al., 1999; Taha et al., 2000; Wilfert et al., 1999; Zijenah et al., 1998). Recently, more attention has been paid to pediatric HIV testing and treatment in resource-limited settings (De Cock, Bunell, & Mermin, 2006; Gilks et al., 2006; Michaels, Eley, Ndhlovu, & Rutenberg, 2006; UNAIDS, 2006). Due to the high cumulative mortality rates in kin and community networks, discussions about grief and death remain associated with HIV disclosure. Many caregivers still fear that an HIV-infected child may die ‘any moment’ after the diagnosis has been communicated (Brouwer, Lok, Wolfers, & Sebagalls, 2000; Foster, 2006; Ledlie, 2001; Wood, Chase, & Aggleton, 2006). Currently used HIV counseling strategies for children are primarily derived from Western psychological models and experiences. It is unclear how far these models are applicable and acceptable within an African culture (Abrams, El-Sadr, & Rabkin, 2005; Friedman, Kippax, Phaswana-Mafuya, Rossi & Newman, 2006; Funck-Brentano et al., 2006; Lee & Rotheram-Borus, 2002; Lester et al., 2002; Raman, 2006; Wilfert et al., 1999). To date, research in HIV counseling with African children has been scarce and has been undertaken mainly in tertiary health care settings (Akpede, Lawal, & Momoh, 2002; Kouyoumdjian, Meyers, & Mtshizana, 2006; Myer, Moodley, Hendricks, & Cotton, 2006; Naeem-Sheik & Gray, 2005; Peltzer & Promtussananon, 2003). Wood et al. (2006) reported on how Zimbabwean children experienced secrecy around HIV in the family. This study aimed at exploring possible explanations for why such discussions may not have taken place by examining adults’ perceived need and acceptance for such discussions with children and their perceptions about the preferred time, setting and type of HIV disclosure to children of different age-groups. Since most African children still reside in rural settings (despite rapid urbanization across the continent) and have their first health care encounter at a primary health care center, it is important to explore the opinions of community members and primary health care workers from a rural area and to investigate possible differences in opinion between these two groups (Michaels et al., 2006). This article reports on the perspectives about disclosing the parent's HIV status to children, disclosing the child's HIV status to HIV-infected children and having discussions about grief and death with children, as expressed through the responses to an anonymous survey among health care workers and community members from rural Mutare and Chimanimani—two neighboring districts in Eastern Zimbabwe.

Results Between March 31 and April 27, 2006, a total of 195 surveys were taken from 64 health care workers and 131 community members from rural Mutare and Chimanimani districts. All participants were black Zimbabweans. Information about age, gender, educational level and the number of biological, foster and bereaved children was summarized for all participants as well as for the health care workers and the community members (Table 1). Health care workers were employed at rural clinics (58.1%), rural hospitals (25.8%) or other places (16.1%) such as the district health office. Health care workers ‘ qualifications were (in descending order of seniority): community health care nurse (1.7%), registered general nurse (54.3%), state-certified nurse (18.6%), primary care nurse (18.6%) and other (6.8%) such as nurse aid. There were no significant differences with regard to location and qualification between the health care workers of the two districts. Table 1. Characteristics of the study population Parameters All participants (n=195) Health care workers (n=64) Community members (n=131) District (%) Rural Mutare 64.6 68.7 62.6 Chimanimani 35.4 31.3 37.4 Age (years): mean±SD 33.0±11.4 35.3±12.3 31.8±10.8 Gender: % males 37.1 29.7 40.8 Educational level in increasing order of seniority (%) 1. Primary education 15.6 3.3 22 2. Secondary education below O-level 15.6 9.9 18.6 3. O-level 50.8 59 46.6 4. A-level 12.3 22.9 6.8 5. Tertiary education 5.7 4.9 6.0 Biological children: mean±SD (range) 2.6±2.4 (0–11) 2.4±2.4 (0–11) 2.7±2.4 (0–10) % Childless 16.9 21.9 14.5 % Having one or more children 83.1 78.1 85.5 Foster children: mean±SD (range) 2.0±2.3 (0–12) 2.8±2.7 (0–12) 1.6±2.0 (0–10) % Not caring for foster children 35.9 28.1 39.7 % Reported caring for one or more foster children Ψ 64.1 71.9 60.3 Deceased children: mean±SD (range) 0.4±1.1 (0–8) 0.2±0.5 (0–2) 0.5±1.3 (0–8) % Who did not loose a child 77.7 85.9 73.3 % Reported having lost one or more biological and/or foster child (without specifying the cause of death) 22.3 14.1 26.7 Ψ The mean number of girls was comparable to the mean number of boys in all groups. Except for the higher educational level of health care workers (χ2 (4)=20.9, p<0.001), health care workers were comparable to community members (p>0.05). Table options Disclosure of the parent's HIV status to the child For a hypothetical situation, more than 63% of the participants expressed the need to give a child some information about the parent's HIV status and more than 62% opted for full disclosure to a 13-year-old child (Table 2). The percentages opting for full disclosure of the parental HIV status were higher among health care workers than community members, but this was only statistically significant for 13-year-old children. Although the choices for the type of disclosure in the group of all participants were comparable for children of the same age and opposite gender, there were significantly more male than female participants opting for only partial instead of full disclosure to a 13-year-old boy. The same phenomenon was observed among community members towards an 8-year-old boy. While there was no clear influence of age group among community members, the percentages for non-disclosure were higher among older health care workers (more than 33 years) than among younger health care workers. However, this difference was only statistically significant in cases of children of 7 or 8 years. Percentages for full disclosure were higher among participants who had biological or foster children, but this did not reach the significance level. Neither the level of education nor child bereavement had any clear influence. Table 2. Disclosure of the parent's HIV status to the child Suppose a mother is found to be HIV infected. Do you think her child should know she has HIV? % Participants opting for In case it is a Group Full disclosure Partial disclosure No disclosure Unsure about the answer n X2 df p Girl of 7 y (question 1) All 32.1 31.6 32.1 4.2 193 Boy of 8 y (question 2) All 37 31.2 26 5.8 192 Boy of 13 y (question 3) All 62 25 10.4 2.6 192 Girl of 13 y (question 4) All 64.8 25.9 7.8 1.5 193 Significant influences from baseline characteristics Group Question 3 HCWs 82.8 10.9 4.7 1.6 64 17.7 3 <0.001 CMs 51.6 32 13.3 3.1 128 Question 4 HCWs 81 11.1 6.3 1.6 63 11.9 3 0.008 CMs 56.9 33.1 8.5 1.5 130 Gender Question 3 All-male 52.1 36.6 11.3 0 71 11 3 0.01 All-female 68.3 18.3 9.2 4.2 120 Question 2 CMs-male 28.8 40.4 30.8 0 52 7.9 3 0.047 CMs-female 37.7 24.7 28.5 9.1 77 Age Question 1 HCWs-⩽33 y 42.9 46.4 7.1 3.6 28 12.3 3 0.006 HCWs->33 y 36.4 15.1 39.4 9.1 33 Question 2 HCWs-⩽33 y 47.8 47.8 4.4 0 23 10.3 3 0.02 HCWs->33y 41 20.5 28.2 10.3 39 If you were found to be HIV-infected, would you want your status to be disclosed to a: % opting for ‘Yes’ Daughter of 14 y All 89.6 192 Son of 14 y All 89.4 189 Health care workers (HCWs); community members (CMs). Table options If the participants were hypothetically HIV-infected, more than 89% of the participants would want their status being disclosed to their 14-year-old child. No important influence from baseline characteristics was observed. Listed reasons for refusal to disclose their own HIV status (n=34) expressed concern about a possible negative impact on the child (e.g., psychological damage, fear of orphanhood, poor school performance) or the relationship with the parent (e.g., refusing to care for the parent, a negative attitude towards the parent). ‘Suffering at school’ and ‘Boys are not concerned’ were each mentioned once. Stigma and broken confidentiality were not explicitly mentioned. Disclosure of the child's HIV status to the child More than 73% of the participants thought that HIV-infected children older than 5 years should be told something about their HIV status. More than 69% opted for full disclosure to children older than 11 years (Table 3). For all age categories, a significantly higher percentage of health care workers than community members opted for full disclosure of the child's HIV status. The percentages opting for full disclosure were higher among males than females, but this was only statistically significant for health care workers in the instance of children from age 5 to 10 years and for community members in cases of children from age 11 to 16 years. Higher educated community members had higher percentages for full disclosure but this did not reach the significance level and was not consistent among health care workers. Childless participants had higher percentages for full disclosure to children younger than 16 years but this was not statistically significant. There was no clear influence of age, fostering children and child bereavement, except for the significantly higher percentage for disclosure to a child from age 5 to 10 years among community members who had lost one or more children than among those who had not lost a child. Table 3. Disclosure of the child's HIV status to the child An HIV-positive child should have % Respondents opting for Full disclosure (as for an adult) Partial followed by full disclosure some months later Partial disclosure No disclosure In case the child is Group n X2 df p 5–10 y (question 1) All 38.1 34.9 27 189 11–16 y (question 2) All 69.3 19.8 10.9 192 >16 y (question 3) All 55.1 27.3 12.9 4.7 194 Significant influences from baseline characteristics Group Question 1 HCWs 50.8 27 22.2 63 6.5 2 0.04 CMs 31.7 38.9 29.4 126 Group Question 2 HCWs 82.5 12.7 4.8 63 8 2 0.02 CMs 62.8 23.3 13.9 129 Group Question 3 HCWs 78.1 17.2 4.7 0 64 22.1 3 <0.001 CMs 43.9 32.3 16.9 6.9 130 Gender Question 1 HCWs-male HCWs-female 63.2 36.8 0 19 7.8 2 0.02 45.5 22.7 31.8 44 Question 2 CMs-male 77.4 15.1 7.5 53 7.8 2 0.02 CMs-female 53.3 28 18.7 75 Child bereavement Question 1 CMs-no child 40.2 21.9 37.9 87 15.8 2 <0.001 CMs-⩾1 child 38.7 54.9 6.4 31 What do you think is the minimum age for an HIV-infected child to be told that it has a disease, without yet specifying that it is HIV (partial disclosure)? Group Mean SD 95% CI n t df p All 10.8 4.2 10.2–11.5 177 HCWs vs. CMs HCWs 9.8 3.9 8.8–10.9 56 −2.1 175 0.03 CMs 11.3 4.3 10.5–12.1 121 Biological children All-no child 8.8 3.2 7.6–10.0 31 −3.6 55 0.001 All-⩾1 child 11.3 4.3 10.6–12.0 146 At what age can you tell an HIV-positive child that it has HIV (full disclosure)? All 14.4 4.5 13.8–15.1 184 HCWs vs. CMs HCWs 12.9 4.1 11.8–14.0 56 −3.3 182 0.001 CMs 15.2 4.5 14.3–16.0 121 Education All-⩽O-level 14.5 4 13.8–15.2 138 2.1 167 0.04 All->O-level 12.8 4.1 11.3–14.3 31 Table options The preferred minimum age for partial disclosure was 10.8±4.2 years (mean±standard deviation) and for full disclosure it was 14.4±4.5 years in the group of all participants. Health care workers opted for partial and full disclosure at significantly younger ages than community members. Childless participants opted for partial disclosure at a significantly younger age than those who had biological children. Higher educated participants opted for full disclosure at a significantly younger age than less-educated participants. No other significant influences from baseline characteristics were observed. A guideline summarizes the information above (Fig. 1). Guideline for the timing and the type of disclosure of the child's HIV status to ... Fig. 1. Guideline for the timing and the type of disclosure of the child's HIV status to the child, according to age groups. Figure options Perceived emotional maturity and intellectual capacity More than half of the participants (50.0% of the health care workers and 59.9% of the community members) considered the majority of HIV-infected children to be less emotionally mature than their uninfected counterparts. A higher percentage of health care workers (28.3%) than community members (13.2%) reported them to be more mature (χ2=6.2, p=0.046). About half the participants (49.5%) thought that the majority of HIV-infected children are as intelligent as their uninfected counterparts while 45.7% thought them to be of lower intellectual capacity. The percentage pointing to a lower intellectual capacity was lower among health care workers (39.3%) than among community members (48.8%) but this did not reach the significance level. Discussing issues of grief and death If found to be HIV-infected, more than 60% of the participants would want issues of grief to be discussed with their children who were more than 5 years old. The percentages consenting for such discussions were about 10% lower among health care workers than among community members but this difference reached the significance level only for a daughter between age 11 and 16 years. The percentage of respondents who would consent to such discussions was higher among males than among females, but this was not statistically significant. The older community members and the younger health care workers had the highest percentages consenting to such discussions but the significance level was reached only for community members in the case of a son from age 11 to 16 years. A higher percentage of less educated participants consented to such discussions, but this was statistically significant only for children younger than 11 years. There was no clear difference observed in relationship with biological or foster children. Participants who had lost one or more children had higher percentages consenting to such discussions than those who had not. This was statistically significant for all children except for daughters from age 5 to 10 years (Table 4). Table 4. Discussing issues of grief and death with children If you were HIV-infected, would you want issues of grief and death to be discussed with a: Group % opting for ‘Yes’ n X2 df p-Value Son of 5–10 y (question 1) All 62.6 182 Daughter of 5–10 y (question 2) All 60.5 185 Son of 11–16 y (question 3) All 89.6 172 Daughter of 11–16 y (question 4) All 88.7 186 Significant influences from baseline characteristics: Group Question 4 HCWs 82.3 62 3.9 1 0.049 CMs 91.9 124 Age Question 3 CMs-⩽33 y 87.3 71 5.2 1 0.02 CMs->33 y 98.2 57 Education Question 1 All-⩽O-level 69.1 139 6.3 1 0.01 All->O-level 45.2 31 Question 2 All-⩽O-level 65.7 140 4.5 1 0.03 All->O-level 45.2 31 Child bereavement Question 1 All-no child 57 135 5.4 1 0.02 All-⩾1 child 77.5 40 Question 3 All-no child 85.8 141 6.5 1 0.01 All-⩾1 child 100 41 Question 4 All-no child 85.4 137 4.5 1 0.03 All-⩾1 child 97.6 41 Table options The listed reasons for refusing to discuss grief with a child from age 11 to 16 years (n=37) expressed concern for a possible negative impact on the child's emotions (e.g., low self-esteem) or a negative impact on their relationship with the parent (e.g., misbehavior, loss of respect). ‘Stigma’ (1/37) and ‘not his/her problem’ (2/37) were of much less importance. Broken confidentiality was not listed as such. For children from age 5 to 10 years, these reasons (n=128) concentrated on the possible negative impact on the child. Nobody expressed concern for relationships with the parent. One respondent expressed fear for broken confidentiality, two mentioned stigma and one participant reported it was of no help. Ninety percent of all participants reported feeling ‘quite’ to ‘very’ confident in discussing grief with adults. Health care workers reported a significantly higher level of confidence than community members: 61.9% versus 24.4% reported feeling very confident (χ2=30.7, p<0.001). A similar phenomenon was observed between male and female community members: 76.9% versus 45.9%, respectively, reported feeling confident (χ2=12.4, p=0.006). 73.2% of the community members older than 33 years versus 46.5% of the younger community members reported feeling confident (χ2=11.0, p=0.01). There were significantly higher confidence levels for participants who cared for more than three foster children as compared to those who cared for one to three foster children and those who did not care for any foster children ( Fig. 2). A similar but non-significant difference was noticed among those who had lost one or more children as compared to those who had not. χ2 (6)=13.8, p=0.03. A similar pattern was noticed among health care workers and ... Fig. 2. χ2 (6)=13.8, p=0.03. A similar pattern was noticed among health care workers and community members. Figure options Health care workers reported slightly higher levels of confidence in assisting parents in disclosing their HIV status to their children (88.8% felt confident) than in assisting parents in disclosing the child's status to the child (79.4%). For a hypothetical situation where a child from age 5 to 16 years has lost his/her mother, 91.0% of the health care workers would advise the foster mother to talk to the child about the funeral and allow the child to attend the funeral. For children from age 11 to 16 years, 3% of the health care workers would advise lying to the child about the death of the mother and ensure he/she did not attend the funeral. Preferred setting for HIV disclosure and discussing grief with children Up to a third of the participants would prefer to initiate HIV disclosure and discussions about grief with their own children without any assistance. While there was quite a wide variety in the preferred combinations of kin to initiate such discussions, between 51.3% and 55.7% of the participants would prefer to have involvement from a health care worker and 42.3–52.2% would like to have help from a family member. Among the most commonly listed family members were: the father's sister (up to 36.7%) and the grandmother (up to 40%), rather than the partner (4.8–14.8%) (Table 5). Table 5. Preferred setting for HIV disclosure or discussions about grief and death Who preferably should disclose the HIV-status of the participant to his/her children? In case of a Most commonly preferred settings: Would desire help from: Most frequently listed family members: HCW Family Son of 14 y The infected parent: 32% 53.60% 42.30% Father's sister: 27.8% The infected parent and a HCW: 25.6% Father's brother: 16.7% A family member and a HCW: 14.3% Partner: 14.8% Grandmother: 7.4% (n=168) Mother's sister: 5.6% Daughter of 14 y The infected parent: 32% 53.80% 43.80% Father's sister: 36.7% The infected parent and a HCW: 24.0% Grandmother: 21.7% The infected parent, a HCW and a family member: 18% Mother's sister: 11.7% Partner: 11.7% (n=171) Father's brother: 10.0% Who preferably should discuss grief and death with the participants’ children in case he/she is found to be HIV-infected? Son of 11–16 y The infected parent: 25.7% 53.20% 51.50% Father's sister: 27.8% The infected parent and a HCW: 22.2% Mother's sister: 15.3% A family member and a HCW: 16.5% Grandmother: 13.9% (n=171) Father's brother=Partner: 8.3% Daughter of 11–16 y The infected parent: 26.8% 51.20% 47.60% Grandmother: 40.0% The infected parent and a HCW: 25.0% Father's sister: 36.7% A family member and a HCW: 14.0% Mother's sister: 11.7% (n=164) Father's brother=Partner: 6.7% Son of 5–10 y The infected parent and a HCW: 23.9% 55.70% 52.20% Grandmother: 26.2% The infected parent: 23.0% Father's sister: 21.4% A family member and a HCW: 15.9% Mother's sister: 11.9% (n=113) Father's brother: 9.5% Partner: 4.8% Daughter of 5–10 y The infected parent: 26.1% 51.30% 48.60% Father's sister: 34.1% The infected parent and a HCW: 24.3% Grandmother: 31.7% A family member and a HCW: 14.4% Mother's sister: 9.7% (n=111) Father's brother=Partner: 4.9%