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.     

Stress, cortisol and well-being of caregivers and children in home-based child care: a case for differential susceptibility

Background We examined whether children cared for by stressed caregivers show lower socio‐emotional well‐being and more stress, compared with children cared for by less stressed caregivers. Methods Perceived stress and cortisol levels of professional caregivers (n= 44), and associations with children's (n= 44) well‐being and cortisol levels in home‐based child care were examined. Results Caregiver perceived stress and cortisol levels were related to children's well‐being but not to children's cortisol levels. Children's social fearfulness acted as a moderator between caregivers' mean ratio of diurnal change in cortisol and children's well‐being. When caregiver cortisol levels decreased, more fearful children were reported higher on well‐being than less fearful peers. In contrast, when caregiver cortisol levels increased, more fearful children were reported lower on well‐being. Conclusions The findings point to differential susceptibility. Child care organizations and parents need to notice that a non‐stressful child care environment is in particular important for children with a difficult temperament.     

'I felt I have grown up as an adult': caregiving experience of children affected by HIV/AIDS in China

Background The growing global epidemic of HIV/AIDS has a significant impact on the lives of both people living with HIV/AIDS and their family members including children. Children of parents with HIV/AIDS may experience an increased responsibility of caregiving in family. However, limited data are available regarding the caregiving experience and its impact on psychosocial well‐being among these children. This study was designed to address these issues by using qualitative data collected from children affected by HIV/AIDS in China. Methods The qualitative data were collected in 2006 in rural central China, where many residents were infected with HIV/AIDS through unhygienic blood collection procedures. In‐depth individual interviews were conducted by trained interviewers with 47 children between 8 and 17 years of age who had lost one or both parents to AIDS. Results Findings of this study suggest that many children affected by AIDS had experienced increased responsibilities in housework and caregiving for family members. Such caregiving included caring for self and younger siblings, caring for parents with illness and caring for elderly grandparents. Positive impacts from children's participation in family caregiving included personal growth and emotional maturity. Negative consequences included physical fatigue, psychological fear and anxiety and suboptimal schooling (dropping out from school, repeated absence from school and unable to concentrate in class). Conclusion While the increased caregiving responsibilities among children reflected some cultural beliefs and had some positive effect on personal growth, the caregiving experience generally negatively effected the children's physical and mental health and schooling. The findings in the current study suggest that community‐based caregiving support is necessary in areas with high prevalence of HIV and limited resources, especially for the families lacking adult caregivers. In addition, social and psychological support should be made available for children participating in family caregiving.     

Financial Parenting,Financial Coping Behaviors,and Well‐Being of Emerging Adults

The goal of this study was to consider the role of parents in the development of their children's financial independence by the time the children are old enough to enter college. Using data from 2,098 first‐year university students, we examined two pathways to emerging adults' financial, psychological, and personal well‐being, combining research on the positive effects of family financial environment and future‐oriented coping behaviors. Two findings are of particular note. The quality of parent‐child communication regarding financial topics proved to be the most potent predictor of children's financial, psychological, and personal well‐being. Further, parents' expectations had a significant indirect influence (via financial coping behaviors) on their children's well‐being. Implications for promoting financial self‐sufficiency among young adults are discussed.     

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.     

Economic sanctions and child HIV

Approximately 1.8 million children under age 15 were living with HIV. This study is the first to empirically examine the impact of sanctions on children's new HIV infection and AIDS‐related death rates. Using sanction and HIV/AIDS data that are available for 71 developing countries from 1990 to 2012, this study reveals that sanctions increase children's new HIV infection and their AIDS‐related death rates. This study increases understanding about the consequences of sanctions, especially their effect on a marginalized population and is in line with previous literature. The significant impacts of sanctions on children's HIV/AIDS suggest that the leader in a country targeted by sanctions needs to consider extending programs to respond to children's HIV/AIDS both during sanctioning and after it is lifted.     

The Continuation of Home Care to Severely Impaired Children and Aged in Israel:

There are a growing number of children and aged with severe chronic health problems in the community. Mothers become the prime caregivers to these children and aging spouses or middle-aged offspring the caregivers to these aged. The services offered to these families are determined by economic and social conditions, as well as changing fashions, rather than knowledge of the patients' and caregivers' needs. The purpose of this study was to assess the impact of homecare upon families caring for children versus those caring for aged and these families' attitudes toward continuation of home care versus institutionalization. The families included in the study were drawn randomly from the case load of community nurses in central Israel. In-depth interviews were conducted with 92 families of severely impaired children and 181 families of severely impaired adults and aged in their homes. While the majority of both populations carry a heavy burden of caregiving over years. they also receive gratification from their ability to care for their patient at home. There is little difference between those caring for children and those caring for adults in their attitudes toward continuation of home care. Mental rather than physical impairment, a deteriorating illness trajectory; depression, aggression and tension of the care-giver, the absence of sufficient social support and home care services correspond with negative feelings toward continued home care. The perceived impact of caregiving responsibilities upon the caregivers' lives, the ability to tolerate and manage symptoms and above all the quality of the patient-caregiver relationship influenced the caregivers' attitudes toward institutionalization in both populations. Family attitude toward continued homecare and institutionalization of children and adults are compared and the needs for services discussed.     

The direct and indirect financial costs of informal cancer care: A scoping review

Informal caregivers are the primary source of support for cancer patients, providing assistance with household tasks, medical care and emotional support. These responsibilities often result in high levels of emotional, physical, social and financial burden for the caregiver. The aim of this study was to perform a scoping review exploring what is known regarding the financial costs experienced by caregivers and identify gaps in the literature. Seven databases were searched for articles published between May 2008 and May 2018 related to direct and indirect costs of informal cancer care. Included articles reported on the costs incurred by cancer caregivers as a dollar value, relied on caregiver‐reported costs and were peer reviewed. A total of 19 studies met the inclusion criteria. These studies reported out of pocket costs? opportunity costs of informal care time and caregiver time loss from paid employment. Care time was the largest source of cancer caregiver costs, averaging $4,809 per month when valued using the proxy good method or $2,877 per month when the opportunity cost approach was used. Caregiver costs were highest when the care recipient was in the palliative phase of the disease. There was an absence of literature reporting costs for cancer caregivers in low and middle income countries and none of the included studies considered costs related to the caregivers' medical expenditures. There were many challenges when comparing the costs across studies due to variations in the type of expenses reported and the methods used to value expenses. Quantifying the financial costs associated with being an informal caregiver can facilitate the communication of the financial burden caregivers experience, potentially spurring the development of policies and programs to reduce their financial burden and better support cancer caregivers.     

Children's body mass index and nutrition intake in HIV/AIDS

Abstract

HIV/AIDS in China poses many challenges for caregivers and their children. A total of 154 caregivers of HIV/AIDS-affected families were interviewed to examine the children's nutrition intake and body mass index (BMI) in the context of HIV/AIDS in the family. The results showed that 25% of children in HIV/AIDS-affected families were underweight or at risk of being underweight according to US criteria. More than half the children reported that their consumption of protein such as meat, eggs or milk ranged from not at all to two times during the past month. About 40% of the children sometimes or often went hungry due to insufficient food. The study findings underscore the need to improve the nutrition and general health of children of people living with HIV/AIDS.     

Levers and barriers to patient-centred care with children: findings from a synthesis of studies of the experiences of children living with type 1 diabetes or asthma

Background The last 50 years have seen a sea change in approaches to health care with children, from a time when children were routinely separated from parents while in hospital, to current recognition of the importance of placing the experiences of children and their families at the heart of care. Yet, there is a gap in the evidence about how children's involvement might be best achieved.This study aimed to synthesize findings of children's experiences of long‐term illness and, from this, to identify levers and barriers to patient‐centred care with children. Methods A synthesis of studies of the experiences of children living with type 1 diabetes or asthma. Data sources Eight health and social care databases, bibliography searches and consultation with field experts and first authors of included studies. Eligibility criteria Qualitative studies with children 10 years (mean) and younger on their experiences of living with type 1 diabetes or asthma. Main results Findings suggest key ‘levers’ to patient‐centred care with children include: (1) engagement with children's expertise about their own lives: their personal and social experiences of their care, including how these are affected by their relative lack of power in some settings; (2) exploring children's understandings and preferences in terms of their physical sensations and day‐to‐day experiences; (3) willingness to find resources to engage with even the youngest children; (4) avoiding age‐based assumptions about children's contributions to their care. Discussion and conclusions Action on the above ‘levers’ may present a range of challenges in healthcare settings not least because it represents a move away from medicine's historical focus on children's developing competencies to engage rather with children's social realities from the earliest ages.     

What helps children to be more active and less sedentary? Perceptions of mothers living in disadvantaged neighbourhoods

Background Increasing children's participation in physical activity and decreasing time spent in sedentary behaviours is of great importance to public health. Despite living in disadvantaged neighbourhoods, some children manage to engage in health‐promoting physical activity and avoid high levels of screen‐based activities (i.e. watching TV, computer use and playing electronic games). Understanding how these children manage to do well and whether there are unique features of their home or neighbourhood that explain their success is important for informing strategies targeting less active and more sedentary children. The aim of this qualitative study was to gain in‐depth insights from mothers regarding their child's resilience to low physical activity and high screen‐time. Methods Semi‐structured face‐to‐face interviews were conducted with 38 mothers of children who lived in disadvantaged neighbourhoods in urban and rural areas of Victoria, Australia. The interviews were designed to gain in‐depth insights about perceived individual, social and physical environmental factors influencing resilience to low physical activity and high screen‐time. Results Themes relating to physical activity that emerged from the interviews included: parental encouragement, support and modelling; sports culture in a rural town; the physical home and neighbourhood environment; child's individual personality; and dog ownership. Themes relating to screen‐time behaviours encompassed: parental control; and child's individual preferences. Conclusions The results offer important insights into potential avenues for developing ‘resilience’ and increasing physical activity and reducing screen‐time among children living in disadvantaged neighbourhoods. In light of the negative effects of low physical activity and high levels of screen‐time on children's health, this evidence is urgently needed.     

Male and female genital cutting among Southern Thailand's Muslims: rituals,biomedical practice and local discourses

This paper explores the manifestation of HIV‐related stigma in seven‐ and eight‐year‐old white South African children's responses to HIV and AIDS. Drawing from elements of ethnographic and interview data, it shows how young children's responses to HIV and AIDS are inscribed within popular accounts of contagion and articulate gendered, sexual, raced and classed discourses in South Africa. Rejecting static accounts of stigma, the paper shows how children resist and confirm power inequalities involving intense self‐regulation as well as inscribing within discourses of care and concern for others infected with HIV and AIDS. The findings have implications for scaling up educational efforts to address awareness of HIV and AIDS and stigma, but also to build on positive insights that young children demonstrate with regard to the disease.     

Child-sensitive social protection. A new approach to programming for children affected by HIV and AIDS

The global agenda for children affected by HIV and AIDS is rapidly moving forward in new and important directions. Over the past 5 years, the evidence base on children and HIV/AIDS has expanded considerably and a new global consensus on how to effectively respond to the challenges faced by children affected by HIV and AIDS has emerged. Recent work commissioned and completed by the Interagency Task Team (IATT) on Children and HIV/AIDS and the Joint Learning Initiative on Children and HIV/AIDS (JLICA) synthesizing the evidence base on children affected by HIV/AIDS has been instrumental in this regard. Drawing upon the evidence base, this paper focuses upon two critical shifts in global consensus on how to improve the response to children affected by HIV and AIDS that are particularly relevant for policy and programming. Firstly, there is increasing agreement that the global response to children should be AIDS sensitive, rather than AIDS exclusive. Although there are some AIDS-specific vulnerabilities children face, as a result of poverty and social exclusion, it is broadly recognized that many of their needs are shared with other vulnerable children. Secondly, it has become evident that short-term responses to mitigating impacts on children's lives are ineffective. Rather, given that the impacts of the epidemic, especially the effects of chronic poverty, will be felt for generations, government-led national responses that enhance systems of care, support, and protection for children are required. Indeed, global consensus has consolidated around the urgent need to strengthen and scale up child-sensitive social protection for all vulnerable children, including those affected by AIDS. For development partners, this presents a signal opportunity to support capacity-building initiatives in ministries responsible for social protection and to provide technical and financial support to strengthen social protection mechanisms for the benefit of all vulnerable children.     

“Caregiving is a full‐time job” impacting stroke caregivers' health and well‐being: A qualitative meta‐synthesis

Family caregivers contribute to the sustainability of healthcare systems. Stroke is a leading cause of adult disability and many people with stroke rely on caregiver support to return home and remain in the community. Research has demonstrated the importance of caregivers, but suggests that caregiving can have adverse consequences. Despite the body of qualitative stroke literature, there is little clarity about how to incorporate these findings into clinical practice. This review aimed to characterise stroke caregivers' experiences and the impact of these experiences on their health and well‐being. We conducted a qualitative meta‐synthesis. Four electronic databases were searched to identify original qualitative research examining stroke caregivers' experiences. In total, 4,481 citations were found, with 39 studies remaining after removing duplicates and applying inclusion and exclusions criteria. Articles were appraised for quality using the Critical Appraisal Skills Programme (CASP), coded using NVivo software, and analysed through thematic synthesis. One overarching theme, ‘caregiving is a full‐time job’ was identified, encompassing four sub‐themes: (a) restructured life, (b) altered relationships, (c) physical challenges, and (d) psychosocial challenges. Community and institution‐based clinicians should be aware of the physical and psychosocial consequences of caregiving and provide appropriate supports, such as education and respite, to optimise caregiver health and well‐being. Future research may build upon this study to identify caregivers in most need of support and the types of support needed across a broad range of health conditions.     

A study of self and task performance in childcare centres as perceived by caregivers under local administrative organisations in Thailand

The purpose of this research was to study the opinions toward self and task performance in childcare centres as perceived by caregivers under the jurisdiction of the Local Administrative Organization. The four areas evaluated were caregiver characteristics, task performance, objectives of caregiving and educating young children and problems and obstacles at work. The sample comprised 885 caregivers from 74 provinces in four regions of Thailand who were surveyed using a questionnaire consisting of five sections based on the research framework. Caregivers were predominantly female (98.6%), 34 years old on average and had a bachelor's degree in education (40.8%) or in‐service training (89.9%) in early childhood education. Caregivers perceived that their personality, teaching preparation, method of teaching, human relations and supervision of children during lunch and play were good. They rated their teaching and regular appraisal of children's progress as ‘medium’. Also, at the medium level were activities such as cooking food, planting food and providing parent orientation during the school year. Activities which were not rated highly were raising animals (48.2%) and planning the school curriculum (45.8%). The most frequently ranked objectives in care and educating young children were whole child development (19.27%), promoting morality and ethics (13.20%), children's self care daily activities (12.81%), communicating with and helping parents who work during the day (12.41%) and developing children in the community (9.58%). Problems and obstacles identified were an inadequate budget and unsuitable buildings ( X = 3.28). Pollution ( X = 1.20) was seen as the least of the caregivers' problems, perhaps because it was not rated as impacting on the performance of caregivers' duties or children's health.     

RECENT TRENDS IN YOUNG CHILDREN'S TELEVISION‐INDUCED FEARS IN FINLAND

The aim of this study is to analyse the changing role of the media in children's everyday lives with reference to children's fears and well‐being. The method was semistructured interviews with children aged 5 to 6 in Finland in 1993 (101 children) and 2003 (109 children). Nearly 80 per cent of children reported TV‐induced fears both in 1993 and in 2003. There was a significant increase over the 10 years in fears caused by children's programmes and fantasy characters and a significant decrease in fears caused by adults' programmes. TV‐induced fears correlated positively with fears of nightmares at both times; with fears of imaginary creatures and war, guns and violence in 2003; and with major accidents and death in 1993.     

Modeling caregivers' perceptions of children's need for formal care: physical function, intellectual disability, and behavior

BackgroundLike most caregivers, informal caregivers for children (typically parents) with special needs supply the majority of the care provided. Formal care is sometimes needed to supplement informal caregivers' efforts. For those interested in children with special needs, there is a paucity of research on those factors affecting the amount of formal care that caregivers' request.Objectives/HypothesesThis research investigates factors affecting the amount of Medicaid personal care services (PCS) requested by primary caregivers for children with special needs. The research focuses especially on the roles played by the child's functional status, intellectual abilities, and behaviors in determining the level of assistance requested by caregivers.MethodsThe data used in this research are cross-sectional information on 262 children with special needs who were Medicaid recipients in a single southwestern state. These data were collected in 2007 by master's trained social workers or registered nurses using a standardized assessment instrument.ResultsThe results indicate that a child's ability to independently perform activities of daily living (ADLs) tasks plays the major role in determining caregivers' perceptions of the need for PCS. The severity of a child's intellectual disability, like some other factors investigated, has an effect on caregivers' perceptions, but it is an indirect effect that operates through the level of the child's ADL impairment. A child's age and behaviors have direct effects on caregivers' perceptions of need, as does the presence of barriers to the caregiver providing care.DiscussionMuch of the research on children with special needs has emphasized the importance of the child's medical or behavioral diagnoses. Little attention has been given to modeling caregivers' perceptions of children's needs. This analysis of caregivers' requests for formal PCS brings to the forefront the role of ADL or functional status in this process. Many factors that one would expect to directly affect caregivers' perceptions of need, instead, have indirect effects filtered through their impact on the child's functional status.     

The mediating role of emotional control in the link between parenting and young children's physical aggression

Aggression in early childhood has been found to predict future psychopathology, academic problems, and delinquency. In a sample of 136 mother–child pairs (M_age?=?4 years, 11 months, SD?=?11 months, 58% boys) associations among mothers’ responding with distress to children's negative emotions, children's emotional control, and children's physically aggressive behaviours were explored. Children's emotional control problems mediated the relation between mothers’ distress responses and children's physical aggression – higher levels of distress responses by mothers to children's negative emotions were associated with increases in emotional control problems in children, which in turn were associated with higher levels of children's physical aggression. Contrary to expectations, children's negative emotionality (i.e. temperament) did not significantly moderate the association between mothers’ responding with distress to children's negative emotions and children's emotional control problems. Results emphasize the importance of focusing on children's emotional control skills and adaptive maternal responses to children's negative emotions.     

Families' and healthcare professionals' perceptions of healthcare services for children and young people with medically unexplained symptoms: a narrative review of the literature

Children and young people frequently report physical complaints that have no observable physical pathology known as medically unexplained symptoms (MUS). Research suggests that MUS are associated with substantial physical and psychological impairments and may have a negative impact on children's and young people's functional status and well‐being in the long term. Due to the potentially complex needs of this group, children and young people with MUS may require timely access to suitable health and social care services to effectively manage symptoms and achieve their academic, social and personal potential. Families and professionals can offer important insights into the availability and appropriateness of current community and specialist health and social care services. This review is the first critical evaluation and synthesis of research that has examined families' and healthcare professionals' (HCP) perceptions of healthcare services for children and young people with MUS. A systematic search of electronic databases and manual searches of key journals and reference lists identified 17 papers from 15 studies for inclusion in the review. The review highlights the paucity of rigorously conducted research on this topic. Studies have been narrowly focused on the views of a homogeneous group of mothers and young people attending single centres. There has been some attempt to examine doctors' views, but the perceptions of children, fathers and health and social care professionals are absent or under‐represented, and multi‐site and longitudinal studies are lacking. Thematic analysis of the results from the included studies suggests that knowledge, communication, health beliefs and healthcare settings are factors that influence families' and HCPs' perceptions of services. Families report dissatisfaction with some HCPs' approach to managing MUS. The findings suggest that children and young people with MUS are at risk of receiving suboptimal care and support because there is insufficient research to inform high‐quality, evidence‐based practice.     

Parenting in a Pandemic: Work–Family Arrangements,Well-Being,and Intimate Relationships Among Adoptive Parents

The COVID-19 pandemic presents unforeseen challenges to families. This mixed-methods study aimed to address how 89 adoptive parents (lesbian, gay, heterosexual) with school-age children are navigating a major public health crisis with social, economic, and mental health consequences. Specifically of interest were adoptive parents' worries and concerns; work–family arrangements; and mental, physical, and relational health, in the context of the pandemic and associated quarantine. Findings revealed that 70% of participants had changed work situations, with most newly working from home just as their children initiated remote homeschooling. The division of labor was rarely a source of stress, although the parent who was more involved in homeschooling sometimes experienced resentment. Concerns related to the pandemic included worries about health and children's emotional well-being and global concerns such as the national economy. Almost half reported declines in mental health (e.g., due to the stress of working and homeschooling), with lesbians being significantly more likely than others to report declines. Declines in physical health were rarer (less than 20%), with more than a quarter reporting improvements (e.g., due to increased exercise). Few reported declines in relationship quality, although almost a quarter reported declines in intimacy. Findings have implications for family and health professionals.