Students and their parental attitudes toward the education of children affected by HIV/AIDS: a cross‐sectional study in AIDS prevalent rural areas,China

Objective : To investigate the prevalence and determinants of student and parental attitudes toward the education of children affected by HIV/AIDS in areas of rural China where AIDS is prevalent. Methods : A cross‐sectional study of a random sample of students (n=732) and their parents (n=732) conducted in April 2010, using a questionnaire and in‐depth interview. Results : Twenty‐six per cent of students and 29% of parents had a ‘good’ attitude toward the education of children affected by HIV/AIDS. Following adjustment for sociodemographic characteristics, students’ attitudes were significantly associated with knowledge of HIV/AIDS non‐transmission (adjusted odds ratio [aOR]= 3.13) and their parents’ attitudes (aOR= 2.38), but not with knowledge of HIV/AIDS transmission, prevention or their parents’ knowledge. Parents’ attitudes were significantly associated with knowledge of HIV/AIDS non‐transmission (aOR= 2.12) and their children's attitudes (aOR= 2.52), but not with knowledge of HIV/AIDS transmission, prevention or their children's knowledge. Conclusion : Stigma and discrimination undermine the right to education of HIV/AIDS‐affected children in rural China. Improving non‐transmission knowledge may improve caring attitudes. Implications : HIV/AIDS public health educational campaigns highlighting non‐transmission and extending family education, combined with school education, may help to enhance an environment of non‐discrimination and safeguard public support programs for the right to education of children affected by HIV/AIDS.     

Children caring for their ill parents with HIV/AIDS

Abstract

Children orphaned by HIV/AIDS experience not only the trauma of a parent's death, but the stress of living with and often caring for an ill and dying parent. We interviewed 50 mothers ill from HIV/AIDS in both Mutare, Zimbabwe and New York, USA, and one child of each aged 8–16 about personal assistive care the child provided; other household responsibilities; hours/day children spent on chores; and parental/child mental health. Children provided substantial amounts of personal care; took responsibility for cooking, cleaning, shopping and other household tasks; and some were their parents' confidants. The amount of care provided was related to maternal disability, not child age, gender, or presence of other adults/siblings. Children reported performing more tasks than their mothers reported. Almost half of New York and 80% of Mutare children said they had too much responsibility, and most reported reduced after-school and peer activities. Both children and parents felt children were more capable because of their responsibilities. Depression rates in New York and Mutare children were high but Mutare children were extremely vulnerable; two-thirds had depression scores in the clinically significant range. However, child caregiving was unrelated to depression. Research to better understand the role of child caregivers is still needed.     

Impact of paediatric human immunodeficiency virus infection on children's and caregivers' daily functioning and well-being: a qualitative study

Background Human immunodeficiency virus (HIV) infection impacts not only upon the physical health of affected children, but also their psychosocial functions, family relationships and economical status. Caregivers are confronted with complex challenges related to the physical, emotional and financial demands of raising these children. The purpose of this study was to enhance our understanding of the impact of HIV disease on both children's and caregivers' well‐being, using a qualitative inquiry approach. Methods A total of 35 primary caregivers of HIV‐infected children participated in in‐depth interviews. The issues discussed included the major negative impacts on children's daily functioning and well‐being, and the perceived caregiver/parental burden. Participants included parents (40%), grandparents (22.8%), other relatives (e.g. uncles, aunts) (34.3%) and one foster parent (2.8%). Results Qualitative analysis revealed that the major negative impacts of HIV/AIDS included physical symptoms, school performance and relationship changes. The major negative impacts on caregivers' well‐being included acceptance of the diagnosis, dealing with the financial burden and keeping the diagnosis private. Conclusions Approaches are needed to address these challenges by enhancing families' coping skills and building supportive networks.     

Maternal general health and children's cognitive development and behaviour in the early years: findings from the Millennium Cohort Study

Background Mothers often experience physical and psychological difficulties during the post‐natal period and these may continue through the early years of raising children and have negative effects on engagement and caregiving. Pathways between maternal depression, parental engagement and caregiving and children's subsequent development have been described in longitudinal studies; yet, less is known about how other aspects of maternal health may influence children's development. Methods A longitudinal analysis within the Millennium Cohort Study was conducted including 7906 families from England. Maternal general health and psychological well‐being were assessed when their children were 9 months and 3 years old, socio‐demographic characteristics were assessed at 9 months, and engagement and caregiving were assessed at 3 years. These were examined as predictors of children's learning and development and behaviour at age 5. Results There are clear associations between maternal general health and children's development with regard to both learning and development and behaviour. These effects are reduced if psychological distress is taken into account; yet, maternal general health maintains importance as a predictor for children's subsequent development. There is evidence of an association via engagement and caregiving which links maternal health to children's development and evidence of the influence of underlying socio‐demographic disadvantage. Conclusion General maternal health as well as psychological well‐being during the early years of raising children may be influential for children's development. This study suggests the need for a broader recognition of maternal health as well as psychological well‐being as a foundation for family well‐being, and speaks to support for mothers in maintaining engagement and caregiving for their children during periods of ill health.     

An evaluation of dyadic peer support for caregiving parents of children with chronic lung disease requiring technology assistance

This study evaluated a dyadic peer support pilot intervention for parents of technology-assisted children with chronic lung disease. These medically-fragile children, living at home in the primary care of their parents, require continuous or intermittent assistance from technological support such as home oxygen, respiratory or cardiac monitors and/or mechanical ventilators. The intervention consisted of matching parents with similar caregiving responsibilities, in order to reciprocally engage in parent-to-parent support. Results identified mixed outcomes based on quantitative and qualitative methods. Participants conveyed benefits and limitations of this modality of peer-based support. They generally favoured peer support as a clinical resource for caregiving parents as the intervention offered a valued opportunity for mutual sharing with another parent who could understand the unique realities particular to caring for a medically-fragile child. Sharing daily experiences was reported to reduce isolation, increase knowledge, and provide an important sense of feeling understood. Challenges associated with peer support included scheduling difficulties and personality incompatibility. Recommendations for program development in clinical settings are described.     

Women and AIDS caregiving: women's work?

In this ethnographic study, I examine personal, kinship, and social obligations and the role of women in the traditional Thai family. Under what circumstances do women take on the responsibility to care or not care, and how do they cope with the disease and care when they are also infected? Fifteen women who were afflicted or affected by HIV/AIDS participated in in-depth interviews and participant observations. Analysis employed mainly qualitative methods following Spradley. I show that women who are responsible for caring for both themselves and others, including members of their immediate families or extended family members, face a double jeopardy by virtue of their inferior role and status. When HIV-infected women experience illness, sometimes they feel split; they are incapable of functioning normally, yet they are obligated to do "What they've got to do." Women as carers feel that they have to care because they want to free someone else from suffering despite the fact that they are also suffering. Women roles as family carers seem to be both psychologically and socially constructed. AIDS care is not just a labour of love, but also is done in the spirit of work following Buddhist beliefs of karma and metta. In conclusion, traditional, persistent gender imbalances and inequalities influence women's sexuality, vulnerability, responsibility, and caregiving. When women become infected with HIV and sick with AIDS, their quality of life drops because of the physical, psychological, cultural value, and economic burdens of care they face. AIDS then necessitates rather than prevents women from fulfilling their multiple roles. Consequently, there is a need for greater support especially among Thai women who are afflicted and affected with AIDS.     

"I have lost sexual interest …"-challenges of balancing personal and professional lives among nurses caring for people living with HIV and AIDS in Limpopo, South Africa

As part of a capacity-building research project, this study examined the extent to which caring for people living with HIV and AIDS (PLWHA) affects both professional and personal relationships of nurse caregivers. The data were collected using focus group interviews with 17 female nurses at two Limpopo hospitals. The PEN-3 cultural model was used as a theoretical framework for exploring how nurses balance job demands with family responsibilities. The results generated three themes: the multiple identities nurses experience within their family and professional lives; nurse attitudes related to patient gender; and stigma experienced by nurses who care for PLWHA. Caring for PLWHA influences nurses' personal and professional lives by interfering with their perceptions and emotions as they relate to spousal, parental, and gendered relationships. The findings offer insight into factors requiring consideration when designing interventions to help nurses cope with the stress associated with caring for PLWHA while simultaneously managing family responsibilities.     

Children and adolescents living with HIV positive parents: Emotional and behavioural problems

Abstract

This study explores the emotional and behavioural problems in children living with an HIV-positive parent, and identifies specific high-risk and protective factors for their psychological well-being. Data were collected on 718 parents living with HIV and on 1136 HIV-affected children in a European multi-centre study (EUROSUPPORT IV) adopting a cross-sectional and retrospective study design. Sociodemographic characteristics, HIV-related stressors, variables relating to caregiving and outcome variables relating to family functioning and children's symptoms were assessed using a self-reported questionnaire. Results indicated a low level of parental HIV disclosure to children, and an elevated level of behavioural symptoms in HIV-affected children as reported by parents. Children had experienced a high degree of distressing life events. In multivariate analysis, perceived healthy family functioning emerged as protective for a low degree of behavioural symptoms in children and adolescents. The results call for a shift towards family-centred service delivery in HIV care and counselling. Service implications are discussed in the light of increasing numbers of women and couples living with HIV who become parents and need tailored support in facing the challenges of being a caregiver living with HIV.     

我国部分农村地区受艾滋病影响儿童心理弹性的保护性因素研究

【目的】 调查山西省某艾滋病比较集中的地区,探讨该区受艾滋病影响儿童心理弹性的保护性因素。 【方法】 采用儿童焦虑性情绪障碍筛查表和儿童抑郁障碍自评量表,将受艾滋病影响儿童筛分为心理弹性组与非弹性组;再采用半结构访谈的方法,对弹性组的儿童进行调查。 【结果】 受艾滋病影响儿童心理弹性的保护性因素可划分为四个因素。家庭因素包括父母的关心和支持、民主的教育方式、父母的榜样力量;学校包括老师的关心、同伴的支持;认知包括对父母的评价、相信自己、对未来的期望;行为包括倾诉、寻求帮助、感恩与回报。 【结论】 在对受艾滋病影响儿童进行心理干预时,应综合考虑家庭、学校、认知、行为等因素,促进其心理弹性的发展,增进其心理健康。     

艾滋病致孤儿童学习现状分析

目的了解艾滋病致孤儿童的学习现状，为进一步加强以家庭和学校为基础的支持提供线索。方法选取5个中国政府和联合国儿童基金会合作艾滋病致孤儿童关怀项目县，对251名6-14岁艾滋病致孤儿童进行问卷调查，并对其中10人进行个人深入访谈。结果23.1％的儿童没有上学，其中31.0％在父／母去世前辍学，主要原因是经济困难、给家里干活、照顾生病父母、跟不上学习等。上学儿童中，29．5％的儿童学习成绩在父母去世后下降，主要原因有父母生病去世期间缺课、担心父／母病情、生活困难导致家庭作业条件差，无人管教、家务活多、上课不能集中注意力等。结论父／母患艾滋病或死于艾滋病后儿童的学习情况发生了变化，他们在父母生病期间和父母去世后需要经济和社会心理支持。     

Supporting ‘Young Carers’ in Kenya: From Policy Paralysis to Action

African children who care for sick or dying adults are receiving less than optimal support due to confusion about whether or not young caregiving constitutes a form of child labour and the tendency of the authorities to play it “safe” and side with more abolitionist approaches to children's work, avoiding engagement with support strategies that could be seen as support of child labour. To challenge this view, and move from policy paralysis to action, we present a study from western Kenya that explores community perceptions of children's work and caregiving as well as opportunities for support. The study draws on 17 community group conversations and 10 individual interviews, involving 283 members of a Luo community in the Bondo District of western Kenya. We provide a detailed account of how integral children's work is to household survival in the context of poverty, HIV and AIDS as well as community recommendations on how they and external service providers can work together in supporting children faced with excessive caregiving and income-generation responsibilities. We use our findings to call for less restrictive regulations of children's work and to develop a plan for policy and action for young carers that identifies key actors, their roles and responsibilities, and how they might best collaborate—in a way that is sensitive both to concerns about child labour as well as community strengths, resources and apprehensions about the stigmatisation of children targeted by agencies.     

Do Chinese parents with HIV tell their children the truth? A qualitative preliminary study of parental HIV disclosure in China

Background With the extended lifespan of people living with human immunodeficiency virus (HIV) due to the advent of antiretroviral therapy, the disclosure of HIV serostatus to their uninfected children is becoming more critical. However, limited data are available regarding parental HIV disclosure to children in China. We explore patterns of parental HIV disclosure and the reasons for disclosure or non‐disclosure to children. Methods A preliminary study was conducted using open‐ended questions in Guangxi, China in 2011 with 39 parents living with HIV. Results A majority of participants (77%) had not disclosed their HIV serostatus to their children. Participants who voluntarily disclosed tended to be older and were more likely to disclose to their adult children. Among parents who disclosed, reasons included a need for emotional and financial support, as well as feelings of obligation to their children. Among non‐disclosing parents, primary reasons included concerns that children were too young to understand, fear of being stigmatized, and fear of increased psychological burden to children. Conclusions Few parents with HIV disclosed their HIV status to their children. These data indicate the need for future research to explore disclosure issues in relation to children's age and the implementation of developmentally appropriate interventions and support systems for parents and children affected by HIV in China.     

Disclosing HIV diagnosis to infected children: A health care team's approach

Abstract

Telling children that they have HIV is a one of the most difficult psychosocial issues for parents and professionals caring for children with HIV. The literature presents three primary reasons for this: concerns for children's emotional well-being, fear that children will not be able to keep the secret within the family and maternal fear of blame when the virus is transmitted from mother to child. Through research and clinical experience, our HIV team has developed strategies for balancing the needs of parents and children through the three major stages of disclosure: pre-disclosure preparation; the disclosure event and immediate support; and post-disclosure: ongoing assessment, support and information. Before children are told about their HIV, we provide them with health information through partial truth-telling, building gradually upon their knowledge about their health while supporting their parents as they move towards disclosure. We provide support and information during the disclosure event, as planned with parents, and ongoing support after disclosure, as children gain knowledge and understanding of their health and HIV issues. We discuss issues such as multi-disciplinary communication and delayed disclosures.     

北京市中学生家长艾滋病知识、态度、行为及健康教育现况研究

目的了解北京市中学生家长在预防艾滋病方面的知识、态度和需求,为学生家长以家庭为基础发挥健康教育作用提供依据.方法对象为北京市20所中学学生家长的整群抽样样本.结果家长对艾滋病知识的正确回答率在56.7%和95.3%之间,对于不会引起艾滋病传播的途径,正确回答率较低,普遍存在着将传播途径扩大化的问题.家长艾滋病常识、传播途径、态度得分,城区高于农村,高中学生家长高于初中学生家长,差异有统计学意义.72.2%的家长从未和孩子讨论过有关艾滋病的话题.96.4%的家长认为有必要在学生中加强毒品和艾滋病的教育.30.2%的家长认为应由学校和家长共同承担对孩子的艾滋病健康教育责任.结论家长普遍认为有必要在学生中加强毒品和艾滋病的教育,应由学校和家长共同承担对孩子的艾滋病健康教育责任,但家长需要进一步提高对艾滋病的认识,并付诸实际行动,以满足家庭健康教育的需求.     

A Comparison of Physical Health Outcomes for Caregiving Parents and Caregiving Adult Children

Using data from the National Survey of Midlife Development in the United States and using the stress process model, this study compared caregiving parents and caregiving adult children with regard to health outcomes. The study sample consisted of 74 caregiving parents and 219 caregiving adult children. Predictors included type of family relationship, provision of activities of daily living, duration of caregiving, and family demands. Social support did not mediate the relations between significant predictor variables and health outcomes. The type of family relationship was associated with health outcomes with caregiving parents demonstrating poorer self‐perceived health and more chronic conditions than caregiving adult children. Perceived family demands were associated with increased number of chronic conditions for caregiving adult children and caregiving parents. Unlike previous studies that measured objective family demands, perceived family demands was found to have a strong association with the number of chronic health conditions for both groups of caregivers.     

Family caregivers in rural Uganda: the hidden reality

We conducted 16 in-depth interviews with family caregivers of AIDS patients in three rural districts in western Uganda. They were selected from a client visitation list of the home-based care program for AIDS patients, based on volunteer participation. Family caregivers reported huge problems associated with providing the necessary psychological, social, and economic care. They also said that the physical and emotional demands of caregiving are overwhelming daily challenges. Most support to AIDS patients provided by family, friends, and the churches. The study highlights the great burden of caregivers, in sub-Saharan Africa who most often are elderly women and young girls. This study examine, the burden and related health issues of family caregivers, primarily women, for AIDS patients in Uganda. It was part of a broad research project using qualitative methods on family caregiving in the home environment in sub-Saharan Africa. As the requirements for family care giving are often overwhelming for women under the conditions as they exist in Uganda and in other developing countries, it constitutes a gender issue of great importance that has not been appreciated fully in the international literature. Family caregiving is also of international relevance, as HIV/AIDS is a global pandemic of previously unknown proportions. In many poor countries, family caregiving is the most common and often the only care that AIDS patients receive, because clinic-based care often is not available close to home or is not affordable. Therefore, family caregiver support programs to alleviate this burden are essential for all those countries where HIV/AIDS is prevalent. Family caregiver burden encompasses medical, social, and economic issues at the household level, which requires an interdisciplinary approach in order to fully understand and appreciate the different dimensions of the family caregiver burden and its negative impact on the lives of so many women in so many countries.     

Family Caregivers in Rural Uganda: The Hidden Reality

We conducted 16 in-depth interviews with family caregivers of AIDS patients in three rural districts in western Uganda. They were selected from a client visitation list of the home-based care program for AIDS patients, based on volunteer participation. Family caregivers reported huge problems associated with providing the necessary psychological, social, and economic care. They also said that the physical and emotional demands of caregiving are overwhelming daily challenges. Most support to AIDS patients provided by family, friends, and the churches. The study highlights the great burden of caregivers, in sub-Saharan Africa who most often are elderly women and young girls.

This study examine, the burden and related health issues of family caregivers, primarily women, for AIDS patients in Uganda. It was part of a broad research project using qualitative methods on family caregiving in the home environment in sub-Saharan Africa. As the requirements for family care giving are often overwhelming for women under the conditions as they exist in Uganda and in other developing countries, it constitutes a gender issue of great importance that has not been appreciated fully in the international literature. Family caregiving is also of international relevance, as HIV/AIDS is a global pandemic of previously unknown proportions. In many poor countries, family caregiving is the most common and often the only care that AIDS patients receive, because clinic-based care often is not available close to home or is not affordable. Therefore, family caregiver support programs to alleviate this burden are essential for all those countries where HIV/AIDS is prevalent. Family caregiver burden encompasses medical, social, and economic issues at the household level, which requires an interdisciplinary approach in order to fully understand and appreciate the different dimensions of the family caregiver burden and its negative impact on the lives of so many women in so many countries.