Caregiving experience and its influencing factors : rural versus urban adult-child caregivers caring for parents with dementia in China

Background: It is predicted that China will have the largest number of cases of dementia in the world by 2025 (Ferri et al., 2005). Research has demonstrated that caring for family members with dementia can be a long-term, burdensome activity resulting in physical and emotional distress and impairment (Pinquart & Sorensen, 2003b). The establishment of family caregiver supportive services in China can be considered urgent; and the knowledge of the caregiving experience and related influencing factors is necessary to inform such services. Nevertheless, in the context of rapid demographic and socioeconomic change, the impact of caregiving for rural and urban Chinese adult-child caregivers may be different, and different needs in supportive services may therefore be expected. Objectives: The aims of this research were 1) to examine the potential differences existing in the caregiving experience between rural and urban adult-child caregivers caring for parents with dementia in China; and 2) to examine the potential differences existing in the influencing factors of the caregiving experience for rural as compared with urban adult-child caregivers caring for parents with dementia in China. Based on the literature review and Kramer.s (1997) caregiver adaptation model, six concepts and their relationships of caregiving experience were studied: severity of the care receivers. dementia, caregivers. appraisal of role strain and role gain, negative and positive well-being outcomes, and health related quality of life. Furthermore, four influencing factors (i.e., filial piety, social support, resilience, and personal mastery) were studied respectively. Methods: A cross-sectional, comparative design was used to achieve the aims of the study. A questionnaire, which was designed based on the literature review and on Kramer.s (1997) caregiver adaptation model, was completed by 401 adult-child caregivers caring for their parents with dementia from the mental health outpatient departments in five hospitals in the Yunnan province, P.R. China. Structural equation modelling (SEM) was employed as the main statistical technique for data analyses. Other statistical techniques (e.g., t-tests and Chi-Square tests) were also conducted to compare the demographic characteristics and the measured variables between rural and urban groups. Results: For the first research aim, the results indicated that urban adult-child caregivers in China experienced significantly greater strain and negative well-being outcomes than their rural peers; whereas, the difference on the appraisal of role gain and positive outcomes was nonsignificant between the two groups. The results also indicated that the amounts of severity of care receivers. dementia and caregivers. health related quality of life do not have the same meanings between the two groups. Thus, the levels of these two concepts were not comparable between the rural and urban groups in this study. Moreover, the results also demonstrated that the negative direct effect of gain on negative outcomes in urban caregivers was stronger than that in rural caregivers, suggesting that the urban caregivers tended to use appraisal of role gain to protect themselves from negative well-being outcomes to a greater extent. In addition, the unexplained variance in strain in the urban group was significantly more than that in the rural group, suggesting that there were other unmeasured variables besides the severity of care receivers. dementia which would predict strain in urban caregivers compared with their rural peers. For the second research aim, the results demonstrated that rural adult-child caregivers reported a significantly higher level of filial piety and more social support than their urban counterparts, although the two groups did not significantly differ on the levels of their resilience and personal mastery. Furthermore, although the mediation effects of these four influencing factors on both positive and negative aspects remained constant across rural and urban adult-child caregivers, urban caregivers tended to be more effective in using personal mastery to protect themselves from role strain than rural caregivers, which in turn protects them more from the negative well-being outcomes than was the case with their rural peers. Conclusions: The study extends the application of Kramer.s caregiving adaptation process model (Kramer, 1997) to a sample of adult-child caregivers in China by demonstrating that both positive and negative aspects of caregiving may impact on the caregiver.s health related quality of life, suggesting that both aspects should be targeted in supportive interventions for Chinese family caregivers. Moreover, by demonstrating partial mediation effects, the study provides four influencing factors (i.e., filial piety, social support, resilience, and personal mastery) as specific targets for clinical interventions. Furthermore, the study found evidence that urban adult-child caregivers had more negative but similar positive experience compared to their rural peers, suggesting that the establishment of supportive services for urban caregivers may be more urgent at present stage in China. Additionally, since urban caregivers tended to use appraisal of role gain and personal mastery to protect themselves from negative well-being outcomes than rural caregivers to a greater extend, interventions targeting utility of gain or/and personal mastery to decrease negative outcomes might be more effective in urban caregivers than in rural caregivers. On the other hand, as cultural expectations and expression of filial piety tend to be more traditional in rural areas, interventions targeting filial piety could be more effective among rural caregivers. Last but not least, as rural adult-child caregivers have more existing natural social support than their urban counterparts, mobilising existing natural social support resources may be more beneficial for rural caregivers, whereas, formal supports (e.g., counselling services, support groups and adult day care centres) should be enhanced for urban caregivers.

Psycho-markers of weight loss. The roles of TFEQ Disinhibition and Restraint in exercise-induced weight management

Eating behaviour traits, namely Disinhibition and Restraint, have the potential to exert an effect on food intake and energy balance. The effectiveness of exercise as a method of weight management could be influenced by these traits. Fifty eight overweight and obese participants completed 12-weeks of supervised exercise. Each participant was prescribed supervised exercise based on an expenditure of 500 kcal/session, 5 d/week for 12-weeks. Following 12-weeks of exercise there was a significant reduction in mean body weight (-3.26 ± 3.63 kg), fat mass (FM: -3.26 ± 2.64 kg), BMI (-1.16 ± 1.17 kg/m2)and waist circumference (WC: -5.0 ± 3.23 cm). Regression analyses revealed a higher baseline Disinhibition score was associated with a greater reduction in BMI and WC, while Internal Disinhibition was associated with a larger decrease in weight, %FM and WC. Neither baseline Restraint or Hunger were associated with any of the anthropometric markers at baseline or after 12-weeks. Furthermore, after 12-weeks of exercise, a decrease in Disinhibition and increase in Restraint were associated with a greater reduction in WC, whereas only Restraint was associated with a decrease in weight. Post-hoc analysis of the sub-factors revealed a decrease in External Disinhibition and increase in Flexible Restraint were associated with weight loss. However, an increase in Rigid Restraint was associated with a reduction in %FM and WC. These findings suggest that exercise-induced weight loss is more marked in individuals with a high level of Disinhibition. These data demonstrate the important roles that Disinhibition and Restraint play in the relationship between exercise and energy balance.

Refusal of medical treatment : a child's prerogative?

Society has a need for children to be able to make health care decisions. Homeless children need access to health care. Parents may not be accessible or competent to consent to their child’s health care. The familial relationship may have broken down. Children may not want their parents to know about drug, alcohol or pregnancy related issues. There is legal and academic support for the right of children to make autonomous decisions with respect to their health care. However what these decisions cover and who can make them is not clear. Whether or not a minor has capacity and is therefore competent to consent to medical treatment is a question of law. Some states of Australia have enacted legislation, while others rely on the common law to determine this issue. At common law a minor is capable of giving consent to medical treatment when he or she achieves a sufficient understanding and intelligence to be able to understand fully what is proposed. Known as ‘Gillick competence’ this is a well known principle of law. The question posed by this paper is whether the decision of a ‘Gillick competent’ child can and should be overridden by the court?

The Biodex Isokinetic Dynamometer for knee strength assessment in children : advantages and limitations

Objective: To critically appraise the Biodex System 4 isokinetic dynamometer for strength assessment of children. Methods: Appraisal was based on experiences from two independent laboratories involving testing of 213 children. Issues were recorded and the manufacturer was consulted regarding appropriate solutions. Results: The dynamometer had insufficient height adjustment for alignment of the knee for some children, requiring the construction of padding to better fit the child within the dynamometer. Potential for entrapment of the non-testing leg was evident in the passive and eccentric modes and a leg bracket restraint was constructed. Automated gravity correction did not operate when protocols were linked or data was exported to an external device. Conclusions: Limitations were noted, some of which were applicable to knee strength testing in general and others which were specific to use with children. However, most of these obstacles could be overcome, making the Biodex System 4 suitable for assessment of knee strength in children.

The relationship between parents’ self-efficacy beliefs, outcome expectations, child behaviour, and management of atopic dermatitis

Atopic dermatitis (AD) is a chronic inflammatory skin condition, characterized by intense pruritis, with a complex aetiology comprising multiple genetic and environmental factors. It is a common chronic health problem among children, and along with other allergic conditions, is increasing in prevalence within Australia and in many countries worldwide. Successful management of childhood AD poses a significant and ongoing challenge to parents of affected children. Episodic and unpredictable, AD can have profound effects on children’s physical and psychosocial wellbeing and quality of life, and that of their caregivers and families. Where concurrent child behavioural problems and parenting difficulties exist, parents may have particular difficulty achieving adequate and consistent performance of the routine management tasks that promote the child’s health and wellbeing. Despite frequent reports of behaviour problems in children with AD, past research has neglected the importance of child behaviour to parenting confidence and competence with treatment. Parents of children with AD are also at risk of experiencing depression, anxiety, parenting stress, and parenting difficulties. Although these factors have been associated with difficulty in managing other childhood chronic health conditions, the nature of these relationships in the context of child AD management has not been reported. This study therefore examined relationships between child, parent, and family variables, and parents’ management of child AD and difficult child behaviour, using social cognitive and self-efficacy theory as a guiding framework. The study was conducted in three phases. It employed a quantitative, cross-sectional study design, accessing a community sample of 120 parents of children with AD, and a sample of 64 child-parent dyads recruited from a metropolitan paediatric tertiary referral centre. In Phase One, instruments designed to measure parents’ self-reported performance of AD management tasks (Parents’ Eczema Management Scale – PEMS) and parents’ outcome expectations of task performance (Parents’ Outcome Expectations of Eczema Management Scale – POEEMS) were adapted from the Parental Self-Efficacy with Eczema Care Index (PASECI). In Phase Two, these instruments were used to examine relationships between child, parent, and family variables, and parents’ self-efficacy, outcome expectations, and self-reported performance of AD management tasks. Relationships between child, parent, and family variables, parents’ self-efficacy for managing problem behaviours, and reported parenting practices, were also examined. This latter focus was explored further in Phase Three, in which relationships between observed child and parent behaviour, and parent-reported self-efficacy for managing both child AD and problem behaviours, were explored. Phase One demonstrated the reliability of both PEMS and POEEMS, and confirmed that PASECI was reliable and valid with modification as detailed. Factor analyses revealed two-factor structures for PEMS and PASECI alike, with both scales containing factors related to performing routine management tasks, and managing the child’s symptoms and behaviour. Factor analysis was also applied to POEEMS resulting in a three-factor structure. Factors relating to independent management of AD by the parent, involving healthcare professionals in management, and involving the child in management of AD were found. Parents’ self-efficacy and outcome expectations had a significant influence on self-reported task performance. In Phase Two, relationships emerged between parents’ self-efficacy and self-reported performance of AD management tasks, and AD severity, child behaviour difficulties, parent depression and stress, conflict over parenting issues, and parents’ relationship satisfaction. Using multiple linear regressions, significant proportions of variation in parents’ self-efficacy and self-reported performance of AD management tasks were explained by child behaviour difficulties and parents’ formal education, and self-efficacy emerged as a likely mediator for the relationships between both child behaviour and parents’ education, and performance of AD management tasks. Relationships were also found between parents’ self-efficacy for managing difficult child behaviour and use of dysfunctional parenting strategies, and child behaviour difficulties, parents’ depression and stress, conflict over parenting issues, and relationship satisfaction. While significant proportions of variation in self-efficacy for managing child behaviour were explained by both child behaviour and family income, family income was the only variable to explain a significant proportion of variation in parent-reported use of dysfunctional parenting strategies. Greater use of dysfunctional parenting strategies (both lax and authoritarian parenting) was associated with more severe AD. Parents reporting lower self-efficacy for managing AD also reported lower self-efficacy for managing difficult child behaviour; likewise, less successful self-reported performance of AD management tasks was associated with greater use of dysfunctional parenting strategies. When child and parent behaviour was directly observed in Phase Three, more aversive child behaviour was associated with lower self-efficacy, less positive outcome expectations, and poorer self-reported performance of AD management tasks by parents. Importantly, there were strong positive relationships between these variables (self-efficacy, outcome expectations, and self-reported task performance) and parents’ observed competence when providing treatment to their child. Less competent performance was also associated with greater parent-reported child behaviour difficulties, parent depression and stress, parenting conflict, and relationship dissatisfaction. Overall, this study revealed the importance of child behaviour to parents’ confidence and practices in the contexts of child AD and child behaviour management. Parents of children with concurrent AD and behavioural problems are at particular risk of having low self-efficacy for managing their child’s AD and difficult behaviour. Children with more severe AD are also at higher risk of behaviour problems, and thus represent a high-risk group of children whose parents may struggle to manage the disease successfully. As one of the first studies to examine the role and correlates of parents’ self-efficacy in child AD management, this study identified a number of potentially modifiable factors that can be targeted to enhance parents’ self-efficacy, and improve parent management of child AD. In particular, interventions should focus on child behaviour and parenting issues to support parents caring for children with AD and improve child health outcomes. In future, findings from this research will assist healthcare teams to identify parents most in need of support and intervention, and inform the development and testing of targeted multidisciplinary strategies to support parents caring for children with AD.

The child, the text and the teacher : reading primers and reading instruction

From the late sixteenth century, in response to the problem of how best to teach children to read, a variety of texts such as primers, spellers and readers were produced in England for vernacular instruction. This paper describes how these materials were used by teachers to develop first, a specific religious understanding according to the stricture of the time and second, a moral reading practice that provided the child with a guide to secular conduct. The analysis focuses on the use of these texts as a productive means for shaping the child-reader in the context of newly emerging educational spaces which fostered a particular, morally formative relation among teacher, child and text.

A child led participatory approach for technology-based intervention

There is significant interest in Human-computer interaction methods that assist in the design of applications for use by children. Many of these approaches draw upon standard HCI methods,such as personas, scenarios, and probes. However, often these techniques require communication and kinds of thinking skills that are designer centred,which prevents children with Autism Spectrum Disorders or other learning and communication disabilities from being able to participate. This study investigates methods that might be used with children with ASD or other learning and communication disabilities to inspire the design of technology based intervention approaches to support their speech and language development. Similar to Iversen and Brodersen, we argue that children with ASD should not be treated as being in some way “cognitively incomplete”. Rather they are experts in their everyday lives and we cannot design future IT without involving them. However, how do we involve them Instead of beginning with HCI methods, we draw upon easy to use technologies and methods used in the therapy professions for child engagement, particularly utilizing the approaches of Hanen (2011) and Greenspan (1998). These approaches emphasize following the child’s lead and ensuring that the child always has a legitimate turn at a detailed level of interaction. In a pilot project, we have studied a child’s interactions with their parents about activities over which they have control – photos that they have taken at school on an iPad. The iPad was simple enough for this child with ASD to use and they enjoyed taking and reviewing photos. We use this small case study as an example of a child-led approach for a child with ASD. We examine interactions from this study in order to assess the possibilities and limitations of the child-led approach for supporting the design of technology based interventions to support speech and language development.

Teacher education to meet the challenges of child sexual abuse

The phenomenon of child sexual abuse has significant implications for teachers’ pre-service training and professional development. Teachers have a pedagogical role in dealing with abused children, and a legal and professional duty to report suspected child sexual abuse. Teachers require support and training to develop the specialised knowledge and confidence needed to deal with this complex context. This article explains the social context of child sexual abuse, its health and educational consequences, and the legal context, showing why teachers require this specialised training. It then reports on findings from an Australian study into the amount of training received by teachers about child sexual abuse, and teachers’ satisfaction with that training. Results have implications for teacher training strategies in pre-service and in-service settings.

The association between maternal infant feeding practices and child weight at 11-17 months in first-time Australian mothers

Introduction: Emerging evidence reveals that early feeding practices are associated with child food intake, eating behaviour and weight status. This cross-sectional analysis examined the association between maternal infant feeding practices/beliefs and child weight in Australian infants aged 11-17 months. Methods: Participants were 293 first-time mothers of healthy term infants (144 boys, mean age 14±1 months) enrolled in the NOURISH RCT. Mothers self-reported infant feeding practices and beliefs using the Infant Feeding Questionnaire (Baughcum, 2001). Anthropometric data were also measured at baseline (infants aged 4 months). Multiple regression analysis was used, adjusting for infant age, gender, birth weight, infant feeding mode (breast vs. formula), maternal perceptions of infant weight status, pre-pregnancy weight, weight concern, age and education. Results: The average child weight-for-age z-score (WAZ) was 0.62±0.83 (range:-1.56 to 2.94) and the mean change in WAZ (WAZ change) from 4 to 14 months was 0.62±0.69 (range:-1.50 to 2.76). Feeding practices/beliefs partly explained child WAZ (R2=0.28) and WAZ change (R2=0.13) in the adjusted models. While child weight status at 14 months was inversely associated with responsive feeding (e.g. baby feeds whenever she wants, feeding to stop baby being unsettled) (β=-0.104, p=0.06) and maternal concern about the child becoming underweight (β=-0.224, p<0.001), it was positively associated with mother’s concern about child overweight (β=0.197, p<0.05). Birth weight, infant’s age, maternal weight concern and perceiving her child as overweight were significant covariates. WAZ change was only significantly associated with responsive feeding (β=-0.147, p<0.05). Conclusion: Responsive feeding may be an important strategy to promote healthy child weight.

Children as experts in their lives : child inclusive research [Editorial Introduction]

The focus of this special volume of CSI on research with and by children reflects a major paradigm shift in child research - a shift from a focus on the child as object of to a focus on the child as subject (and actor) in research (see Mason and Hood 2010). In his lead article in the first issue of this journal (2008), Asher Ben-Arieh highlighted the way in which the child indicators movement reflects this paradigm shift, outlining the way in which new directions in measuring and monitoring child well-being were leading to new roles for children in this process. He noted the importance of including children’s own perspectives on their well-being and argued that ‘incorporating children’s subjective perceptions is both a pre-requisite and a consequence of the changes historically in the measuring and monitoring of child well-being’ (p.13). This special issue again takes up this agenda of the child as subject in research...

Their children's first educators : parents' views about child sexual abuse prevention education

In this descriptive focus group study, we investigated parents’ views about child sexual abuse prevention education at home and in schools. Focus groups were conducted with a sample of 30 Australian adults who identified as the parent or caregiver of a child/children aged 0–5 years. The study explored (1) parents’ knowledge about child sexual abuse prevention, (2) the child sexual abuse prevention messages they provided to their children and the topics they discussed, (3) their attitudes towards child sexual abuse prevention education in schools, and (4) their preferences for content. Data analysis provided seven key themes in these four areas: knowledge (the inadequacy of their own prevention education; and how important is stranger danger now?); messages (bodies, touching, and relationships; the role of protective adults; and parent–child communication); attitudes (voice and choice); and preferences (not the nitty gritty, just the basics). The findings may be useful in assisting school authorities and providers of child sexual abuse prevention programs to better understand parents’ contributions to child sexual abuse prevention education, and their perspectives in relation to provision of school-based prevention programs.

Exploring the contested role of mandatory reporting laws in the identification of severe child abuse and neglect

Significant numbers of children are severely abused and neglected by parents and caregivers. Infants and very young children are the most vulnerable and are unable to seek help. To identify these situations and enable child protection and the provision of appropriate assistance, many jurisdictions have enacted ‘mandatory reporting laws’ requiring designated professionals such as doctors, nurses, police and teachers to report suspected cases of severe child abuse and neglect. Other jurisdictions have not adopted this legislative approach, at least partly motivated by a concern that the laws produce dramatic increases in unwarranted reports, which, it is argued, lead to investigations which infringe on people’s privacy, cause trauma to innocent parents and families, and divert scarce government resources from deserving cases. The primary purpose of this paper is to explore the extent to which opposition to mandatory reporting laws is valid based on the claim that the laws produce ‘overreporting’. The first part of this paper revisits the original mandatory reporting laws, discusses their development into various current forms, explains their relationship with policy and common law reporting obligations, and situates them in the context of their place in modern child protection systems. This part of the paper shows that in general, contemporary reporting laws have expanded far beyond their original conceptualisation, but that there is also now a deeper understanding of the nature, incidence, timing and effects of different types of severe maltreatment, an awareness that the real incidence of maltreatment is far higher than that officially recorded, and that there is strong evidence showing the majority of identified cases of severe maltreatment are the result of reports by mandated reporters. The second part of this paper discusses the apparent effect of mandatory reporting laws on ‘overreporting’ by referring to Australian government data about reporting patterns and outcomes, with a particular focus on New South Wales. It will be seen that raw descriptive data about report numbers and outcomes appear to show that reporting laws produce both desirable consequences (identification of severe cases) and problematic consequences (increased numbers of unsubstantiated reports). Yet, to explore the extent to which the data supports the overreporting claim, and because numbers of unsubstantiated reports alone cannot demonstrate overreporting, this part of the paper asks further questions of the data. Who makes reports, about which maltreatment types, and what are the outcomes of those reports? What is the nature of these reports; for example, to what extent are multiple numbers of reports made about the same child? What meaning can be attached to an ‘unsubstantiated’ report, and can such reports be used to show flaws in reporting effectiveness and problems in reporting laws? It will be suggested that available evidence from Australia is not sufficiently detailed or strong to demonstrate the overreporting claim. However, it is also apparent that, whether adopting an approach based on public health and or other principles, much better evidence about reporting needs to be collected and analyzed. As well, more nuanced research needs to be conducted to identify what can reasonably be said to constitute ‘overreports’, and efforts must be made to minimize unsatisfactory reporting practice, informed by the relevant jurisdiction’s context and aims. It is also concluded that, depending on the jurisdiction, the available data may provide useful indicators of positive, negative and unanticipated effects of specific components of the laws, and of the strengths, weaknesses and needs of the child protection system.

When individual child psychotherapy exacerbates family systems problems in child abuse cases : a clinical analysis

Children who have suffered physical or sexual abuse are as vulnerable as adult trauma victims to experience "secondary trauma", in which the reactions of the family or broader system exacerbate the child's difficulties. Three clinical cases (a 7 yr old male, an 8 yr old male, and a 7 yr old female) are presented that suggest that this secondary trauma can be made worse by either excessive or insufficient provision of individual child psychotherapy, and the way the system interprets and reacts to these clinical decisions. Types of secondary trauma and their interactions with clinical decisions are discussed. Ways of framing clinical decisions to minimize the potential secondary trauma are presented.

Child welfare policy and practice on children’s exposure to domestic violence

There are emerging movements in several countries to improve policy and practice to protect children from exposure to domestic violence. These movements have resulted in the collection of new data on EDV and the design and implementation of new child welfare policies and practices. To assist with the development of child welfare practice, this article summarizes current knowledge on the prevalence of EDV, and on child welfare services policies and practices that may hold promise for reducing the frequency and impact of EDV on children. We focus on Australia, Canada, and the United States, as these countries share a similar socio-legal context, a long history of enacting and expanding legislation about reporting of maltreatment, debates regarding the application of reporting laws to EDV, and new child welfare practices that show promise for responding more effectively to EDV.

Assessing the effectiveness of the child safety net : linkage of hospital and child protection services data on ‘maltreated’ and ‘unintentionally injured' children

-International recognition of need for public health response to child maltreatment -Need for early intervention at health system level -Important role of health professionals in identifying, reporting, documenting suspician of maltreatment -Up to 10% of all children presenting at ED’s are victims and without identification, 35% reinjured and 5% die -In Qld, mandatory reporting requirement for doctors and nurses for suspected abuse or neglect