Parental experience of childhood cancer using Interpretative Phenomenological Analysis

Whilst survival rates for childhood cancer have improved dramatically over the past three decades, it is still a devastating diagnosis for family members and an illness which severely disrupts the lifestyle of the family unit. Developing an understanding of the impact of the illness on the family is crucial to better support families’ deal with the demands of the illness. In this study 9 families in which a child was diagnosed with cancer were interviewed twice over a 12 month period, approximately 6 months apart. Using Interpretative Phenomenological Analysis (IPA), a semi-structured interview was used to explicate parent’s experience of childhood cancer. The results revealed 5 super ordinate themes; (1) a pivotal moment in time, (2) the experience of adaptation in relation to having a sick child, (3) the nature of support, (4) re-evaluation of values during a critical life experience and (5) the experience of optimism and altruism. Findings indicate that parents express both negative and positive experiences as they re-evaluate the meaning and purpose of life, seek to redefine themselves, often in terms of priorities, relationships, sense of community, and achieve degrees of optimism and altruism. Implications for addressing the needs of parents and for further research are discussed.

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.

Parental responsibility and removal of life sustaining treatment : Re Baby D

The case of Re Baby D (No. 2) has been described as a “landmark decision” as to whether parents themselves can authorise medical staff to withdraw life-sustaining treatment from their child or are required to seek the permission of a court or tribunal. The reasons for the decision that the removal of an endotracheal tube from the airway of Baby D was to treat “a bodily malfunction or disease” and therefore could be authorised by the parents will be explored.

Evaluation of the 2010 child restraint legislation in Queensland

Occupant injury comprises the largest proportion of child road crash trauma in most highly motorised countries. In Australia, road crashes are the primary cause of death for children aged 1-14 years and are among the top three causes of serious injury to this age group. For this reason considerable research attention has been focused on understanding the contributing factors and the most effective ways of improving children’s safety as car passengers. Australia has been particularly active in this area, with well regarded work being conducted on levels of use of dedicated child restraints, restraint crash performance in laboratory conditions, examination of real world restraint crash performance (case review), and studies of psychosocial factors influencing perceptions about restraints and their use (Brown & Bilston, 2006; Brown, McCaskill, Henderson & Bilston, 2006; Edwards, Anderson & Hutchinson, 2006; Lennon, 2005, 2007). New legislation for the restraint of children as vehicle passengers was enacted in Queensland in March 2010. This new legislation recognises the importance of dedicated restraint use for children up to at least age 7 years and the protective benefits of rear seating position in the event of a crash. As part of improving children’s safety and addressing key priority areas, the Queensland Injury Prevention Council (QIPC) and Department of Transport and Main Roads (TMR) commissioned the Centre for Accident Research and Road Safety, Queensland (CARRS-Q) to evaluate the impact of the new legislation. Although at the time of commencing the research the legislation had only been in force for 14 months, it was deemed critical to review its effectiveness in guiding parental choices and compliance in order to inform the design and focus of further supporting initiatives and interventions. Specifically, the research sought clear evidence of exactly what impact, if any, the legislation has had on compliance levels and what difficulties (if any) parents/carers experience in relation to interpreting as well as complying with the requirements of the new law. Knowledge about these barriers or difficulties will allow any future changes or improvements to the legislation to address such barriers and thus improve its effectiveness. Moreover, better information about how the legislation has affected parents will provide a basis to plan non-legislative comprehensive multi-strategy interventions such as community, educational or behavioural interventions with parents/carers and other stakeholder groups. In addition, it will allow identification of the most effective aspects of the legislation and those areas in need of extra attention to improve effectiveness/compliance and thus better protect children travelling in cars and improve their health and safety. This report presents the findings from the four components of the research: the literature review; observational study; intercept interviews and focus group with parents; and the interviews with key stakeholders.

Has increasing the age for child passengers to wear child restraints improved the extent to which they are used? Results from an Australian focus group and survey study.

Acknowledgement that many children in Australia travel in restraints that do not offer them the best protection has led to recent changes in legislation such that the type of restraint for children under 7 years is now specified. This paper reports the results of two studies (observational; focus group/ survey) carried out in the state of Queensland to evaluate the effectiveness of these changes to the legislation. Observations suggested that almost all of the children estimated as aged 0-12 years were restrained (95%). Analysis of the type of restraint used for target-aged children (0-6 year olds) suggests that the proportion using an age-appropriate restraint has increased by an estimated 7% since enactment of the legislation. However, around 1 in 4 children estimated as aged under 7 years were using restraints too large for good fit. Results from the survey and focus group suggested parents were supportive of the changes in legislation. Non-Indigenous parents agreed that the changes had been necessary, were effective at getting children into the right restraints, were easy to understand as well as making it clear what restraint to use with children. Moreover, they did not see the legislation as too complicated or too hard to comply with. Indigenous parents who participated in a focus group also regarded the legislation as improving children’s safety. However, they identified the cost of restraints as an important barrier to compliance. In summary, the legislation appears to have had a positive effect on compliance levels and on raising parental awareness of the need to restrain children child-specific restraints for longer. However, it would seem that an important minority of parents transition their children into larger restraints too early for optimal protection. Intervention efforts should aim to better inform these parents about appropriate ages for transition, especially from forward facing childseats. This could potentially be through use of other important transitions that occur at the same age, such as starting school. The small proportion of parents who do not restrain their children at all are also an important community sector to target. Finally, obtaining restraints presents a significant barrier to compliance for parents on limited incomes and interventions are needed to address this.

Evaluation of the Type I child car restraints fitting service in WA

Child passenger injury remains a major road safety issue despite advances in biomechanical understanding and child restraint design. In Australia, one intervention with parents to encourage universal and consistent use of the most appropriate restraint as well as draw their attention to critical aspects of installation is the RoadWise Type 1 Child Car Restraints Fitting Service, WA. A mixed methods evaluation of this service was conducted in early 2010. Evaluation results suggest that it has been effective in ensuring good quality training of child restraint fitters. In addition, stakeholder and user satisfaction with the Service is high, with participants agreeing that the Service is valuable to the community, and fitters regarding the training course, materials and post-training support as effective. However, a continuing issue for interventions of this type is whether the parents who need them perceive this need. Evidence from the evaluation suggests that only about 25% of parents who could benefit from the Service actually use it. This may be partly due to parental perceptions that such services are not necessary or relevant to them, or to overconfidence about the ease of installing restraints correctly. Thus there is scope for improving awareness of the Service amongst groups most likely to benefit from it (e.g. new parents) and for alerting parents to the importance of correct installation and getting their self-installed restraints checked. Efforts to inform and influence parents should begin when their children are very young, preferably at or prior to birth and/or before the parent installs the first restraint.

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

Relationships between maternal feeding and child weight in younger Australian children – Findings from the NOURISH obesity prevention trial

Studies show that in 3-11 year-olds, parental feeding style is directly associated with child weight [1] and also moderates the association between feeding practices and weight [2]. This cross-sectional study aimed to examine these relationships in younger children. Data from 331 of 698 first-time mothers of healthy term children (151 boys, mean age 24±1 months) enrolled in the NOURISH RCT included (a) measured child weight, (b) self-reported feeding styles and controlling feeding practices, and (c) maternal and child covariates. ANCOVA compared mean child weight-for-age z-score (cWAZ) across 4 feeding styles. Regression examined the associations between cWAZ and 5 controlling feeding practices. Moderated multiple regression analysis was planned to examine effects of feeding style on relationships between feeding practices and cWAZ. Feeding style (indulgent = 38.6%, authoritarian = 35.8%, authoritative = 13.1%, uninvolved = 12.5%) was not independently associated with cWAZ. However, ’pressure to eat’ was negatively associated with cWAZ (�=-0.131, p<0.05) higher pressure associated with lower cWAZ. Given feeding style was not associated with cWAZ, moderation analysis was not performed. Contrary to findings in older children, cWAZ in 2-year-olds was not associated with maternal feeding style. However, the negative association between child weight and pressure feeding found in 6-11year-olds [2] appears to hold in toddlers. Educating mothers about potentially detrimental long-term effects of pressure feeding in early childhood, may be more practical and effective in promoting healthy weight than targeting the less concrete concept of feeding styles. References: [1] Hughes, Appetite, 2005;44:83-92. [2] Hennessy, Appetite, 2010;54:369-377.

Internet Child Abuse: Current Research, Policy and Practice

Internet Child Abuse: Current Research and Policy provides a timely overview of international policy, legislation and offender management and treatment practice in the area of Internet child abuse. Internet use has grown considerably over the last five years, and information technology now forms a core part of the formal education system in many countries. There is however, increasing evidence that the Internet is used by some adults to access children and young people in order to ‘groom’ them for the purposes of sexual abuse; as well as to produce and distribute indecent illegal images of children. This book presents and assesses the most recent and current research on internet child abuse, addressing: its nature, the behaviour and treatment of its perpetrators, international policy, legislation and protection, and policing. It will be required reading for an international audience of academics, researchers, policy-makers and criminal justice practitioners with interests in this area.

Contributors to life satisfaction in parents of an adult child with Down syndrome

Aim: This study investigated: (1) concurrent relationships between measures of family life and parental satisfaction with life in parents of an adult with Down syndrome and (2) influence of early family functioning on current parental satisfaction. Method: Sixty-two families were interviewed using a semi-structured interview, and responded to a series of questionnaires related to family functioning when their child with Down syndrome was between 7 and 15 years. Fifteen years later parents were asked to provide data on their current situation, including mental health, and satisfaction and difficulties with respect to care-giving in relation to their adult child. Results: Over half the families provided data to the second phase of the study. Life circumstances were appreciably worse for a small group of families than had been the case 15 years previously; however, these changes were generally unrelated to their parenting role. Overall, parents reported experiencing satisfaction from their care-giving role and did not report high levels of difficulties emanating from this role. Conclusions: Most parents demonstrated good levels of personal functioning, although there was a small group for whom this was not the case. Earlier functioning did not make a strong contribution to current levels of life satisfaction.

Family law issues and schools : guidance for Australian educators

A substantial number of Australian children are now living in separated families, with many moving between their parents’ homes. This has led to educators being confronted with an increasing number of family law issues. This article discusses the key aspects of family law that involve children. It highlights the need for schools to be aware of all family law orders that relate to children in their care, including family court, domestic violence and child protection orders. It also provides guidance in relation to how schools can adopt child focused approaches in some common scenarios, where parents are in dispute. In particular, we will recommend that educators take a child-focused approach, consistent with the principal provision of the Family Law Act 1975 (Cth) that ‘the best interests of the child’ be the paramount consideration. We will highlight how this contrasts starkly with what can be described as a ‘parental rights’ interpretation, which has unfortunately been taken by some since the 2006 amendments to the Family Law Act, and is, in our view, directly at odds with the intention of the legislation.

Child, Adolescent and Family Development [3rd ed.]

"This book explores the foundations of modern developmental thought, incorporating the latest in international research set within a cultural and historical context. Richly illustrated and enhanced by a range of practical teaching resources, this clear and engaging text is intended to reach students across a range of teaching, psychology, social science and health science disciplines. By employing a thematic approach within the chronologically ordered chapters, this text offers a systematic and intuitive structure for both learning and teaching. This new edition features a set of fully updated case studies that consider current trends and issues in developmental theory and practice, as well as end-of-chapter sections that address important stages in the family life cycle."--publisher website

Australian laws and policies on child neglect

This chapter describes the features of different Australian State and Territory laws and policies about child neglect. It makes observations about three major domains of law and policy: laws about child neglect to enable protection of children who are suffering severe neglect (child protection laws); laws and policies about the provision of services for children and their families when experiencing neglect (support-oriented laws and policies); and criminal laws about child neglect.