Protecting the Right to Life of Children with Disabilities in China

ABSTRACT

Chinese social policy to support parents in caring for their children is vital to address the urgent social problem of abandoning the life of children with disabilities by not seeking medical treatment. The child rights approach was used to analyze the effectiveness of Chinese social policy to protect the right to life of these children. Primary and secondary empirical data from 3 case studies where parents decided whether to abandon their child were analyzed. Did the child protection mechanisms protect the right to life of these children, and when did parents decide to abandon their children? The findings were: a) When the children were born, their right to life was not unconditional; b) the decision was made privately by parents—no formal decision procedure was available, the role of professionals was minimal, and the state did not intervene; and c) parents considered the disadvantages to their children if they lived. The implication is that China has not yet established a system to support parents and protect the lives of young children with disabilities. Future research to inform child protection reform and disability support to children and families to prevent children becoming abandoned is urgently needed.     

The therapeutic misconception: a threat to valid parental consent for pediatric neuroimaging research

Neuroimaging research has brought major advances to child health and wellbeing. However, because of the vulnerabilities associated with neurological and developmental conditions, the parental need for hope, and the expectation of parents that new medical advances can benefit their child, pediatric neuroimaging research presents significant challenges to the general problem of consent in the context of research involving children. A particular challenge in this domain is created by the presence of therapeutic misconception on the part of parents and other key research stakeholders. This article revierws the concept of therapeutic misconception and its role in pediatric neuroimaging research. It argues that this misconception can compromise consent given by parents for the involvement of their children in research as healthy controls or as persons with neurological and developmental conditions. The article further contends that therapeutic misconception can undermine the research ethics review process for proposed and ongoing neuroimaging studies. Against this backdrop, the article concludes with recommendations for mitigating the effects of therapeutic misconception in pediatric neuroimaging research.     

The Therapeutic Misconception: A Threat to Valid Parental Consent for Pediatric Neuroimaging Research

Neuroimaging research has brought major advances to child health and well-being. However, because of the vulnerabilities associated with neurological and developmental conditions, the parental need for hope, and the expectation of parents that new medical advances can benefit their child, pediatric neuroimaging research presents significant challenges to the general problem of consent in the context of research involving children. A particular challenge in this domain is created by the presence of therapeutic misconception on the part of parents and other key research stakeholders. This article reviews the concept of therapeutic misconception and its role in pediatric neuroimaging research. It argues that this misconception can compromise consent given by parents for the involvement of their children in research as healthy controls or as persons with neurological and developmental conditions. The article further contends that therapeutic misconception can undermine the research ethics review process for proposed and ongoing neuroimaging studies. Against this backdrop, the article concludes with recommendations for mitigating the effects of therapeutic misconception in pediatric neuroimaging research.     

Success of University Student Volunteers in Obtaining Consent for Reviewing Private Health Information for Emergency Research

This study aimed to determine the success of university student volunteers in obtaining consent from parents to allow review of their child’s personal health information (PHI) for emergency research screening. This study also aimed to examine the variables associated with successful consent. This was a prospective cross-sectional study conducted at a pediatric emergency department (ED). University students, who functioned as delegates of the health information custodian, approached parents for consent. Of 2,506 parents, 1,852 (73.9%) provided consent to allow review of their child’s PHI for research screening. Variables associated with successful consent were high (≥12 months) versus low (<12 months) volunteer experience (OR = 2.0), research related (vs. unrelated) to the child’s chief complaint (OR = 2.0), child treated regularly by specialists at the study institution (OR = 1.7), and ED presentation mid-week vs. weekend (OR = 1.7) and morning vs. evening presentation (OR = 1.4). When approached by a university student volunteer, about 25% of parents declined to have their child’s PHI reviewed for research screening. This model of obtaining consent may put some emergency research at risk for selection bias. Variables that increase the odds of successful consent can be considered in program design to improve the effectiveness of this model.     

Enablers of help‐seeking for deaf and disabled children following abuse and barriers to protection: a qualitative study

Research internationally has highlighted the increased vulnerability of deaf or disabled children to abuse and the frequently inadequate response of services. However, first‐hand accounts of deaf or disabled children have rarely been sought. This paper reports selected findings from one of the first studies exploring experiences of deaf and disabled children regarding help‐seeking following maltreatment. Innovative and sensitive research methods were employed to support 10 deaf or disabled people (children and adults) to take part in guided conversations. The study identifies three enablers of help‐seeking of deaf or disabled children: the capacity of adults to detect abuse and respond to disclosures, supportive relationships or circumstances which facilitate disclosure and for Deaf children, access to registered interpreters. Barriers to protection related to these are also discussed. Recommendations directed at policy makers, practitioners and families include education and awareness raising amongst practitioners, children, parents and carers; addressing isolation of deaf and disabled children; providing comprehensive support services that address the needs of the child holistically; ensuring that the voice of the child is heard; routine access to registered interpreters for Deaf children within mainstream and specialist services and measures to address disablism at local and institutional levels.     

Recognizing and addressing child neglect in affluent families

This paper explores how social workers intervene with affluent parents when there are child protection concerns about neglect. Based on data gathered from a small‐scale exploratory qualitative study with 30 practitioners from 12 local authorities across England, this study examined three overarching questions: (a) How do social workers identify risk factors for vulnerable children in affluent circumstances? (b) Which factors inhibit or enable social workers' engagement with resistant affluent parents when there are child protection concerns? (c) What kind of skills, knowledge, and experience is necessary for social workers to effectively assert their professional authority with affluent parents when there are concerns about abuse and neglect? The findings revealed that indicators of neglect can be difficult to identify and challenging to respond to when parents are affluent. Results indicate that social workers have to navigate complex power relationships with parents who are able to use their class privileges to resist their interventions. The paper concludes with a discussion of social workers' skills and capacities for engaging highly‐resistant affluent parents in the child protection system.     

An overview of the Scottish multidisciplinary child protection review

Following the murder of a young child by her stepfather a ministerial review of child protection across Scotland was established. It was carried out by a multidisciplinary team of representatives from education, health‐nursing, health‐medical, police, social work and the Reporter to the Children's Hearing. The review comprised a number of subprojects and included a direct audit of the practice of all the key agencies. The views of the general public, parents, children and professionals were obtained via a set of consultation subprojects. The audit of practice was built around a set of individual, in‐depth case studies. The cases were drawn from the spectrum of child care and protection cases by sampling from cases known to health visitors, education departments, the police and social work departments. The audit considered compliance with guidance, but the key focus was on outcomes for children. The findings indicated that although there were many examples of good practice with children, a significant number of children were left unprotected or their needs were not met. The issues were not unique to Scotland and are discussed under four key areas. The paper sets out the extent of chronic need amongst the child population that the audit revealed, looks at the messages from consultation about issues of accessing help for children or by children directly, and describes some shortcomings of the current system. Finally the paper analyses the ways that the different agencies interact and sets out a model for how the system can provide a protective network for children who are in need of protection and support.     

Why parents matter: exploring the impact of a hegemonic concern with the timetable for the child

In a climate of austerity, timescales and targets, this paper probes whether parents matter sufficiently within the current child protection system in England. Evidence suggests that achieving partnership working in the context of child protection has become increasingly illusive, particularly when parents are notified that the local authority is considering compulsory intervention to remove their children under the Children Act 1989. Recent changes to legislation, policy and practice ushered in with the aim of achieving earlier decisions within the time frame for the child are laudable, but there are consequences for both children and their parents. The aspirations of the Public Law Outline (2008) are well rehearsed, but the changes being introduced with the recent reform of the family justice system, alongside particular constructions of parenting, may be failing to recognize the potential of many parents, if offered appropriate support, to care safely for their children.     

Child‐centric or family focused? A study of child welfare workers' perceptions of ethnic minority children in England and Norway

This paper analyses child welfare workers' perceptions of ethnic minority children in England and Norway based on in‐depth interviews with 52 child welfare workers in 2008. We employ a child‐centric theoretical framework to explore up to what extent workers focus on minority children in their perceptions. We found that about half of our study participants (n= 27) did so, and many more in Norway than England. They perceived many risks and problems for minority children related to their ethnicity, including children's biculturalism and language skills, parenting methods, unequal treatment and racism, lack of social inclusion, and problems in school. Norwegian workers displayed a broad needs perception and embraced a change‐orientated perspective and held parents accountable for their children's educational success and social inclusion. English workers had a narrower approach, focusing on protecting children. We discuss how the cross‐country differences may be related to different welfare state and child welfare paradigms.     

Practitioners' perceptions and decision‐making regarding child sexual exploitation – a qualitative vignette study

There has been intense controversy about the appropriate response to child sexual exploitation, with debates in the UK particularly hinging on the meaning of consent and coercion. For professionals with a duty to safeguard young people from child sexual exploitation, a key site of tension is how to avoid limiting young people's experience of agency without placing them at risk. Drawing on new qualitative research findings from a vignette study designed to trace professional perception and decision‐making, this paper argues that practitioners' perceptions regarding what counts as consent are refracted through conceptions of age and choice. However, many initial perceptions of agency and its links to age were modified through the interview process. This has implications for how supervision should operate. These topics raise issues of the need for practitioners to have nuanced conceptions of consent in the context of manipulation.     

An account of the experiences of 51 families involved in an initial child protection conference

This paper reports on one part of a research project, funded by the Nuffield Foundation, to evaluate the effects of involving parents in 83 initial child protection conferences in a northern city between May 1991 and June 1992. The experiences of two groups of families are recounted and compared, those who attended the conferences and those who did not An analysis was made of the degree to which the parent's participation in the conference affected their overall attitude to the intervention. There were differences between the two groups with regard to their feeling fairly treated, and in their relationship with their social worker. The factors most strongly associated with attitude were whether the child had been removed from the family or statutory action was recommended, and whether the parents agreed abuse had taken place. The fear of removal of the child had an independent influence on the overall attitude, irrespective of whether or not the parents attended the conference. The parents who attended were glad they had gone but found the experience emotionally difficult Although their positive feelings of involvement did not extend to a conviction that they had influenced the decisions, their on-going relationship with their social worker was less likely to have been impaired where they had been invited and attended.     

ADHD and its comorbidity: an example of gene–environment interaction and its implications for child and family social work

In many of their cases, child and family social workers, particularly those involved with abuse and neglect, will find themselves also working with children who have been diagnosed with attention deficit hyperactivity disorder (ADHD). The paper reviews current understandings and debates about the nature and causes of ADHD. Although modern evidence suggests the neurobiological basis of the condition and the effectiveness of medication in treating the behaviour, it is also recognized that the quality of the child's caregiving and social environment plays a significant role in the aetiology, maintenance and treatment of ADHD. Recognizing the part that psychosocial elements play in understanding the condition, child and family social workers can be valued members of multidisciplinary teams treating ADHD in which they offer support to parents, helping them to understand and manage their ADHD‐diagnosed child.     

Ethnic Differences in the Effects of Parental Depression on Preschool Children's Socioemotional Functioning

The present study describes the depressive symptomatology of 393 parents of prekindergarten children and assesses ethnic differences in the depression scores of these parents and their differential consequences for children's social competence. Data are drawn from the National Center for Early Development and Learning (NCEDL) classroom study, a national, longitudinal study examining the quality and outcomes of prekindergarten programs operated in schools or under the direction of state and local educational agencies, and the supplemental NCEDL familial and social environments study. Analyses indicated that Latino parents were more likely than African‐American and White parents to be depressed. However, as reported by both parents and teachers, behavioral outcomes for African‐American children of parents with elevated depressive symptomatology were worse than children of their Latino and White counterparts. Interactions between ethnicity and depressive symptomatology emerged in the parent‐child relationship, with African‐American parents with elevated depressive symptoms reporting significantly greater levels of conflict in the parent–child relationship than their non‐depressed counterparts. African‐American parents with elevated depression scores were also less likely to be in marital relationships than their non‐depressed counterparts. Among African‐American families, parent–child conflict served as a mediator of the effects of parental depression on child outcomes. Implications for intervention are discussed.     

From parental engagement to the engagement of social work services: discussing reductionist and democratic forms of partnership with families

Social work has moved from a child protection discourse towards a child welfare discourse that views the relationship between social workers and families as a partnership. Partnership with families in the field of child protection and child welfare, however, mirrors diverse ideological motives of social policy, civil society and practice. We engage in a theoretical discussion of different interpretations of partnership. We draw a primary distinction between reductionist and democratic forms of partnership with families. In a reductionist approach, social workers activate parents in order to realize the goals set by social work. A democratic approach to partnership refers to a shared responsibility between social workers, parents and children. In this approach, effective partnership is not something to be realized as an outcome, but a point of departure that implies a joint search for meaning and an experiment with which social workers engage. This engagement presents ‘non‐participation’ not as problematic but as an essential element of participation. The focus then shifts from a methodical approach to partnership – how to activate people to participate in the care process – to the question of how the engagement of social workers can be constructed together with families.     

Children in permanent foster care in Sweden

The Swedish child welfare system has no permanency planning as we know it from, for example, the United States and Great Britain. Regardless of whether the child is placed in foster care with or without the parents’ consent, the law requires semi-annual reviews and there is no time limit set on reunion. Nevertheless, there are foster children who remain in the foster home throughout the whole of childhood, on terms similar to permanent foster care or adoption. This paper concerns a selection of findings from a research project entitled ‘Is there a difference in being a foster child?’. Foster children aged 10–11 were interviewed three times and the children’s perspective was focused on, complemented by the perspective of their foster parent(s). When interviewed about their relationship to their natural family as well as to the foster family, and about having a sense of family belonging and expectations for the future, 11 of the 22 children perceived their stay in the foster home as permanent and regarded themselves as belonging only to the foster family, although all of the children had contact with their birth parents. The study concerns the children’s views as well as those of the foster parents. The perception of permanency in the absence of a legal option of permanency is discussed.     

Battling parenting: The consequences of secure care interventions on parents

Secure care in Sweden is the most intrusive child welfare intervention, and children and their family members have restricted contact. For each child in secure care, there are at least twice as many affected family members and parents who must manage the consequences of this institutionalization. Clearly, it is just as important to understand how secure care affects parents as it is to understand how secure care affects children. To address this issue, we conducted in-depth interviews with 11 parents to eight children who had been placed in secure care during their childhood, focusing on the institutional and societal structures that affected these parents and their parenting. With a narrative approach, stories alluding to a metaphor of war are identified. These stories reveal how all parents (but especially single mothers) are affected by their diverse socio-economic positions and the rigid frames of family life presumed by child welfare interventions. In these narratives, parenting emerges as a social practice rather than a skill. Above all, the stories demonstrate a great deal of vulnerability and sensitivity of parenting. The findings raise critical questions about the meaning and overarching consequences of institutional interventions in a family life.     

An Aboriginal community's perceptions and experiences of child neglect in a rural town

Very little is known about how Aboriginal parents experiencing vulnerabilities and communities perceive child neglect, despite Aboriginal families being highly overrepresented in the child protection system. This research investigates the perceptions and experiences of child neglect from Aboriginal parents and human services workers in a rural community. Research methods consisted of community forums and interviews with parents and workers. One community forum developed interview guides and vignettes, and the second discussed and interpreted findings. Between the two forums, in‐depth interviews were conducted with 18 Aboriginal parents and nine Aboriginal and non‐Aboriginal workers. Overall Aboriginal parents perceived child neglect in a similar way to Aboriginal and non‐Aboriginal workers. Violence and substance abuse were main risk factors for child neglect, and intergenerational trauma, racism and discrimination, and feeling powerless were prevalent in the community. The paper concludes that there are little differences in the way Aboriginal and non‐Aboriginal people understand child neglect. Instead it is the difficult circumstances experienced by Aboriginal families that keep parents from actualising their parenting expectations. The implications of these findings when working with Aboriginal families and communities are also discussed.     

Preventive Services for Adolescents: Exploring the Process of Change

This paper reports on a quasi-experimental study which comparedoutcomes for young people referred to specialist family supportteams with those for others referred to mainstream social workteams. Although there was no evidence that the specialist servicewas more effective in promoting changes in child and familyfunctioning, nevertheless, many young people in both groupsshowed improvement in this respect. This paper explores how,why and in what circumstances these positive changes occurred.The factors which moderated or mediated the effectiveness ofinterventions included both risk and protective factors foremotional and behavioural problems and aspects of the interventionsthemselves. The paper explores the mechanisms whereby thesefactors interacted to help or hinder workers’ effortsto promote change. Child and family attributes and histories,the duration of child and family difficulties, motivation andoptimism all moderated the impact of interventions, making changemore, or less, likely to occur. Aspects of the interventionsthemselves also mediated their effectiveness, such as theirecological approach, the strategies used to change child behaviourand parenting style and the development of a therapeutic alliance.These moderators and mediators of change had a stronger impacton the outcome of interventions than differences in servicetype.     

Contextualizing case reviews: A methodology for developing systemic safeguarding practices

This paper introduces a systemic methodology for reviewing professional responses to abuse between young people. The approach, “contextual case reviewing,” draws upon constructivist structuralism to assess the extent to which safeguarding practices engage with the social and public contexts of abuse. The paper conceptually compares the methodologies of contextual case review and other serious case review methods before drawing upon findings from 2 studies, which used the contextual case review methodology to explore the extrafamilial nature of peer‐on‐peer abuse and the ability of child protection practices to engage with this dynamic. Thematic findings from these studies regarding the practical interpretation of “significant harm” and “capacity to safeguard,” as well as their use within child protection assessments, are used to challenge conclusions of other case reviews, which imply that child protection procedures are sufficient for safeguarding young people. Contextual case reviews suggest that safeguarding practices, and the legislation that underpins them, are culturally, procedurally, and organisationally wedded to the context of the home, whereas insufficiently engaged with extrafamilial contexts of significant harm. The application of these issues require interrogation if social work systems are to provide sufficient mechanisms for safeguarding young people and families at risk of significant harm.     

Less than human: a qualitative study into the experience of parents involved in the child protection system

This paper reports on the findings from a qualitative study into the experiences of parents who were involved in the English child protection system in 2013. Seventeen in‐depth interviews were conducted involving 19 parents and/or partners, and a framework approach was used to analyse the data. There were positive experiences of individual social workers and some positive experiences of the child protection system. However, the overwhelming theme of the parents' experiences was that the system was uncaring, inflexible and for some harmful to both themselves and their children. Despite being included in the child protection process, parents felt they were not afforded the same rights as a participant, as a decision‐maker or as a partner in seeking to improve the situation. The threat of consequences silenced parents who felt unable to speak out or challenge the things they disagreed with or coerced others into signing agreements they did not agree to. Such experiences related to a sense that they were being treated as ‘less than human’. These findings are considered within the context of recent reforms within the English child protection system.