Parents’ experience of time distortion following diagnosis of a serious or lethal fetal anomaly

PURPOSE: To explore the experience of couples who continued pregnancy following a diagnosis of serious or lethal fetal anomaly. STUDY DESIGN: Thirty-one male and female participants were recruited from a high-risk maternal–fetal medicine clinic in Washington State. Data were collected using in-depth interviews during pregnancy and after the birth of their baby. Transcribed interviews were thematically analyzed through the phenomenological lens of Merleau-Ponty. FINDINGS: Participants described how time became reconfigured and reconstituted as they tried to compress a lifetime of love for their future child into a limited period. Participants’ concepts of time became distorted and were related to their perceptual lived experience rather than the schedule-filled,regimented, linear clock time that governed the health professionals. CONCLUSION: Living in distorted time may be a mechanism parents use to cope with overwhelming and disorienting feelings when their unborn baby is diagnosed with a fetal anomaly.

Experience, recursive awareness and understanding in autism spectrum disorders : insights of parents and teachers in Singapore

Provision of an individually responsive education requires a comprehensive understanding of the inner worlds of learners, such as their feelings and thoughts. However, this is difficult to achieve when learners, such as those with Autism Spectrum Disorders (ASD) and cognitive difficulties, have problems with communication. To address this issue, the current exploratory descriptive study sought the views of 133 Singaporean parents and teachers of school-age learners with ASD and cognitive difficulties regarding the inner experience of their children and students. The findings highlight the variety of abilities and difficulties found in how these learners experience their own mental states and understand those of others. These abilities and difficulties are characterized according to type of mental state and analysed in line with three qualia, those of experience, recursive awareness and understanding. The findings indicate that learners show a greater awareness of their own mental states compared to their ability to understand these same mental states in others. Educational implications are discussed.

Undertaking Sensitive Interviews: a Researcher’s Experience of Interviewing Bereaved Parents and Family GPs

The presentation describes the researcher’s experience of undertaking sensitive interviews. Background The interviews form part of a current study that is examining bereaved parents’ experience of caring for their child at home as well as the experience of their GP. This study builds on earlier work that found general practitioners (GPs) were at times uncertain of their role in paediatric palliative care and questioned whether their involvement had been beneficial to the child and family. The rarity of childhood cancer deaths makes it difficult for GPs to develop or maintain palliative care knowledge and skills yet the GP is perceived as the gatekeeper for care within the community. Presentation aim To describe the process of both the preparation for, and undertaking of, sensitive interviews. Study methodology The methodology incorporates tape-recorded semi-structured interviews, thematic framework analysis and Q methodology (QM). QM will be used to capture the experiences of GPs who have cared for a child with cancer receiving palliative care as well the perspectives of care experienced by the families. The semi-structured interview sample comprises 10 families (parents/guardians) whose child has been treated at a regional childhood cancer centre and their GPs. A further 40-60 GPs will be involved in the QM. Findings The preparation for these interviews will be discussed and compared to the supportive bereavement visits undertaken within the researcher’s role as a paediatric Macmillan nurse. The experience of undertaking the interviews will be exemplified with findings from the initial and the current, study. Papers’ contribution The researcher’s experience of preparing for and undertaking sensitive interviews may prove beneficial to other researchers.

Learning to drive with cognitive impairment : the experience of young ADHD diagnosed drivers and their parent supervisors

A subset of novice drivers exhibit executive function impairments which may adversely impact on the learn-to-drive period and subsequent driving experience, potentially explaining their overrepresentation in traffic offences and crashes. This paper presents the results of a qualitative analysis of a small series of in-depth semi-structured interviews undertaken individually with affected young drivers (n = 7) and each of their parent supervisors (n = 6). Young drivers were selected on the basis of their ADHD diagnosis, as a sample particularly affected by executive function impairments. Standardised rating scale measures confirmed the currency of the young drivers’ ADHD symptoms and executive function impairment. Results are discussed in terms of common experiences of the young affected drivers and those of their parents as supervising drivers of the learn-to-drive process and subsequent driving behaviour. Key themes included difficulties that were related to core executive function impairments symptomatic of ADHD. Themes also included common emotions that the young drivers associated with driving, with particular types of impact on their driving behaviour. Common strategies that were used by both the young driver and their parent during this learning process and their perceived effectiveness are also discussed. Those that were perceived to be most effective tended to focus on reducing the cognitive load for the young driver when introducing new information and skills.

A study of parents’ conceptions of their roles as home educators of their children

Home education is a growing phenomenon in Australia. It is the practice whereby parents engage in the full time education of their children at home. This study used a phenomenographic approach to identify and analyse how home educating parents conceive of their roles as home educators. Data analysis presented an outcome space of the parents‘ qualitatively different conceptions of their roles as home educators. This outcome space exemplifies the phenomenon of the roles of parent home educators. This thesis reports on the qualitatively different ways in which a group of 27 home educating parents viewed their roles in the education of their children. Four categories of description of parent home educator roles emerged from the analysis. These parents saw themselves in the role of a (1) learner, as they needed to gain knowledge and skills in order to both commence and to continue home education. Further, they perceived of themselves as (2) partners, usually with their spouse, in an educational partnership, which provided the family‘s educational infrastructure. They also saw themselves in the role of (3) teachers of their children, facilitating their education and development. Finally, they conceived of themselves as (4) educational pioneers in their communities. These four categories were linked and differentiated from each other by three key themes or dimensions of variation. These were the themes of (1) educational influence; (2) educational example; and (3) spirituality, which impacted both their families and the wider community. The findings of the study indicate that home educators experience their roles in four critically different ways, each of which contributes to their family educational enterprise. The findings suggest that home educators, are bona fide educators and that they access parental qualities that provide a form of education which differs from the educational practices characteristic of the majority of Australians. The study has the potential to generate further understandings of home education for home educators and for the wider community. It may also inform policy makers in the fields of education, social welfare, and the law, where there is a vested interest in the education and welfare of children and families.

Mileage, car ownership, experience of punishment avoidance and the risky driving of young drivers

Objective: Young drivers are at greatest risk of injury or death from a car crash in the first six months of independent driving. In Queensland, the graduated driver licensing (GDL) program was extensively modified in July 2007 in order to reduce this risk. Increased mileage and car ownership have been found to play a role in risky driving, offences and crashes; however GDL programs typically do not consider these variables. In addition, young novice drivers’ experiences of punishment avoidance have not previously been examined. The paper explores the mileage (duration and distance), car ownership and punishment avoidance behaviour of young newly-licensed intermediate (Provisional) drivers and their relationship with risky driving, crashes and offences. Methods: Drivers (n = 1032) aged 17-19 years recruited from across Queensland for longitudinal research completed Survey 1 exploring pre-licence and Learner experiences and sociodemographic characteristics. Survey 2 explored the same variables with a subset of these drivers (n = 341) after they had completed their first six months of independent driving. Results: Most young drivers in Survey 2 reported owning a vehicle and paying attention to Police presence. Drivers who had their own car reported significantly greater mileage and more risky driving. Novices who drove more kilometres, spent more hours each week driving, or avoided actual and anticipated Police presence were more likely to report risky driving. These drivers were also more likely to report being detected by Police for a driving-related offence. The media, parents, friends and other drivers play a pivotal role in informing novices of on-road Police enforcement operations. Conclusions: GDL programs should incorporate education for the parent and novice driver regarding the increased risks associated with greater driving particularly where the novices own a vehicle. Parents should be encouraged to delay exclusive access to a vehicle for the novice driver. Parents should also consider whether their young novice will deliberately avoid Police if they tell them their location. This may reinforce not only the risky behaviour but also the young novice’s beliefs that their parents condone this behaviour.

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.

Australian children's experiences of parents' online mediation

This paper draws on the work of the ‘EU Kids Online’ network funded by the EC (DG Information Society) Safer Internet plus Programme (project code SIP-KEP-321803); see www.eukidsonline.net, and addresses Australian children’s online activities in terms of risk, harm and opportunity. In particular, it draws upon data that indicates that Australian children are more likely to encounter online risks — especially around seeing sexual images, bullying, misuse of personal data and exposure to potentially harmful user-generated content — than is the case with their EU counterparts. Rather than only comparing Australian children with their European equivalents, this paper places the risks experienced by Australian children in the context of the mediation and online protection practices adopted by their parents, and asks about the possible ways in which we might understand data that seems to indicate that Australian children’s experiences of online risk and harm differ significantly from the experiences of their Europe-based peers. In particular, and as an example, this paper sets out to investigate the apparent conundrum through which Australian children appear twice as likely as most European children to have seen sexual images in the past 12 months, but parents are more likely to filter their access to the internet than is the case with most children in the wider EU Kids Online study. Even so, one in four Australian children (25%) believes that what their parents do helps ‘a lot’ to improve their internet experience, and Australian children and their parents are a little less likely to agree about the mediation practices taking place in the family home than is the case in the EU. The AU Kids Online study was carried out as a result of the ARC Centre of Excellence for Creative Industries and Innovation’s funding of a small scale randomised sample (N = 400) of Australian families with at least one child, aged 9–16, who goes online. The report on Risks and safety for Australian children on the internet follows the same format and uses much of the contextual statement around these issues as the ‘county level’ reports produced by the 25 EU nations involved in EU Kids Online, first drafted by Livingstone et al. (2010). The entirely new material is the data itself, along with the analysis of that data.

“They’re lunatics on the road” : Exploring the normative influences of parents, friends, and police on young novices’ risky driving decisions

Purpose: Young novice drivers experience significantly greater risk of being injured or killed in car crashes than older more experienced drivers. This research utilised a qualitative approach guided by the framework of Akers’ social learning theory. It explored young novice drivers’ perspectives on risky driving including rewards and punishments expected from and administered by parents, friends, and police, imitation of parents’ and friends’ driving, and advantages and disadvantages of risky driving. Methods: Twenty-one young drivers (12 females, 9 males) aged 16–25 years (M = 17.71 years, SD = 2.15) with a Learner (n = 11) or Provisional (n = 10) driver licence participated in individual or small group interviews. Findings and conclusions: Content analysis supported four themes: (1) rewards and (2) punishments for risky driving, and the influence of (3) parents and (4) friends. The young novice drivers differed in their vulnerability to the negative influences of friends and parents, with some novices advising they were able to resist risky normative influences whilst others felt they could not. The authority of the police as enforcers of road rules was either accepted and respected or seen as being used to persecute young novices. These findings suggest that road safety interventions should consider the normative influence of parents and friends on the risky and safe behaviour of young novices. Police were also seen as influential upon behaviour. Future research should explore the complicated relationship between parents, friends, the police, young novices, and their risky driving behaviour.

Welfare-to-work and the experience of single mothers in Australia : where are the benefits?

In July 2006 ‘welfare-to-work’ policies were introduced for single parents in Australia. These policies require most single parents with school aged children to be employed or seeking employment of 15-25 hours per week in return for their income support payment. The changes represented a sharp increase in the obligations applying to single parents on income support. This paper is concerned with how the well-being of single mothers who are combining income support and paid employment is being influenced by these stepped up activity requirements. The paper draws on data from semi-structured interviews with 21 Brisbane single mothers. The analysis explores participants’ experiences in the new policy environment utilizing the theoretical framework of ‘relational autonomy’. Relational approaches to autonomy emphasize the importance of relations of dependency and interdependency to the development of autonomy and well-being. The findings indicate that in their dealings with the welfare bureaucracy participants experienced a lack of recognition of their identities as mothers, paid workers and competent decision makers. These experiences have negative consequences for self worth, relational autonomy and ultimately the well-being of single parent families.

Driver licensing experience of Korean Australians

Graduated licensing has been identified as the most promising approach to reducing the crash risk of novice drivers. However, research suggests that the effectiveness of graduated licensing appears to differ between urban and rural novice drivers and according to race or ethnicity. Extensive supervised driving practice as a learner driver is an important component of graduated licensing systems in Australia and many other countries. Earlier CARRS-Q research identified that falsification of logbooks was more common among particular demographic groups. The factors underlying this are not well understood. It is unclear whether this reflects a lack of understanding of the importance of supervised practice (given that it is not a licensing requirement in many countries of origin), or it reflects lack of access to vehicles and supervising drivers, or whether there is less respect for driver licensing requirements among some groups. It is possible that the importance of these factors may differ across ethnic groups, depending on socioeconomic factors and cultural attitudes to road safety. In an attempt to better understand these issues, this study presents some preliminary results of focus groups examining the experience of the Queensland Graduated Driver Licensing System by Korean-Australian novice drivers and their parents.

Driver licensing experience of Korean Australian novice drivers

Graduated driver licensing has been shown to improve the safety of young drivers but relatively little is known about how well it works for drivers born in countries where the licensing system is less sophisticated. This research used Bronfenbrenner's ecological model to examine the driver licensing experience of Korean Australian young drivers using driver and parent focus groups and an online survey of drivers. Accumulating the required supervised driving was more difficult for international students than those living with parents and differences in road rules (particularly relating to seat belt use) between the countries exerted an important influence on behaviour.

The schooling experience of adolescent boys with AD/HD: An Australian case study

This study explored the experience of schooling of six adolescent boys diagnosed with AD/HD from the perspectives of the boys, their mothers and their teachers. The study utilised social constructionism as the theoretical orientation and the Dynamic Developmental Theory (DDT) of AD/HD as the explanatory framework. Utilising a multiple, instrumental case-study, data were collected by means of semi-structured individual and focus group interviews as well as a review of school reports across a two year period. Findings of the study suggest that taking medication as prescribed together with supporting the students to make and manage friendships, utilising classroom strategies that support learning, and providing an engaging classroom environment are important considerations to promote a positive schooling experience for adolescents with AD/HD.

Exclusion and Marginalisation in Adolescence: The Experience of School Exclusion on Drug Use and Antisocial Behaviour

Young people excluded from school are a group at an increased risk to drug use and antisocial behaviour during adolescence and later marginalisation and exclusion from society in adulthood (Blyth and Milner, 1993). As part of the Belfast Youth Development Study, a longitudinal study of the onset and development of adolescent drug use, young people who entered post primary school in 2000 (aged 11/12 years) were surveyed annually on four occasions. This paper reports on findings from this survey in relation to a supplementary group of young people who were surveyed because they had been excluded from school. The findings show higher levels of drug use and antisocial behaviour among school excludees, lower levels of communication with their parents/guardians, higher levels of contact with the criminal justice system and increased likelihood of living in communities characterised with neighbourhood disorganisation. This lifestyle perhaps suggests these young people are leading a life that is already taking them towards the margins of society.