Developing a tool to support communication of parental concerns when a child is in hospital

The involvement of parents in their child’s hospital care has been strongly advocated in paediatric healthcare policy and practice. However, incorporating parental worries about their child’s condition into clinical care can be difficult for both parents and healthcare professionals. Through our “Listening To You” quality improvement project we developed and piloted an innovative approach to listening, incorporating and responding to parental concerns regarding their child’s condition when in hospital. Here we describe the phases of work undertaken to develop our “Listening To You” communications bundle, including a survey, literature review and consultation with parents and staff, before findings from the project evaluation are presented and discussed.

Man and child in support of women's choice for abortion

General note: Title and date provided by Bettye Lane.

A woman and child in support of ERA at Grand Central to see women off to Springfield, IL for ERA rally

General note: Title and date provided by Bettye Lane.

Parents’ experiences during the transition from childhood to adolescence with Type 1 Diabetes: Parent-child relationships and support received during this time and clinical research portfolio

Background: Type 1 Diabetes (T1D) management often worsens as children become adolescents. This can be a difficult time for parents as they hand over responsibility of diabetes management to their adolescent. Objectives: To look at the experiences of parents with a child with T1D as they move to adolescence and take more responsibility for their diabetes management. To find out about parents’ experience of support during this transition. Subjects: Three parents of adolescents with T1D. Participants were recruited from the NHS Highland Paediatric Diabetes Service. Methods: Participants took part in a one-to-one semi-structured interview with a researcher. Interpretative Phenomenological Analysis was used to analyse the interviews and find common themes across the interviews. Results: Participants experienced worry throughout their child’s transition to adolescence. They found it difficult to let their child take responsibility for their diabetes but acknowledged that their involvement caused tensions with their adolescent. Participants’ experience was that there were a number of practical adjustments to be made with a diagnosis of T1D and educating the network around their child was important. The participants reported that the diagnosis of T1D had an impact on the whole family and not just the child with the diagnosis. The parents felt well supported medically but said that the amount of time before their first clinic appointment felt too long. All participants had concerns about their adolescent moving to the adult diabetic service. Conclusions: Participants experienced worry relating to aspects of their adolescents T1D that they could not control, but were aware of the tensions caused by trying to keep elements of control. Areas of future research were identified.

The first year: the support needs of parents caring for a child with an intellectual disability

AIM: To describe the support needs of parents caring for a child with an intellectual disability in the first year of life. BACKGROUND: Parents of children with intellectual disabilities face significant challenges during the first year of their child's life which is an important developmental period not previously addressed in the literature. The provision of support by health professionals, particularly nurses and midwives, during this crucial period can impact on parental well-being and on the health and developmental outcomes of their children. However, parents often feel unsupported. DESIGN: The study used a qualitative descriptive methodology. METHODS: Semi-structured interviews were conducted with parents of eleven children with an intellectual disability in Victoria, Australia, during 2014. Interviews were digitally recorded, transcribed verbatim and analysed using thematic data analysis. FINDINGS: Three key areas of support need were identified to assist parents to provide effective care for their child with an intellectual disability in the first year of life: (1) emotional support as parents adjusted to their role of caring for a child with an intellectual disability; (2) information support as they embarked on a quest for knowledge; and (3) support to facilitate their connection to peer networks. The findings highlighted inconsistent provision of support for parents. CONCLUSION: This study informs health professionals about how to provide holistic, timely support to parents of children with intellectual disabilities in the first year of life. There is an urgent need to review how nurses and midwives can provide relevant support that is responsive to parents' needs.

Maternal support for autonomy : relationships with persistence for children with Down syndrome and typically developing children

Maternal behaviors and child mastery behaviors were examined in 25 children with Down syndrome and 43 typically developing children matched for mental age (24–36 months). During a shared problem-solving task, there were no group differences in maternal directiveness or support for autonomy, and mothers in the two groups used similar verbal strategies when helping their child. There were also no group differences in child mastery behaviors, measured as persistence with two optimally challenging tasks. However, the two groups differed in the relationships of maternal style with child persistence. Children with Down syndrome whose mothers were more supportive of their autonomy in the shared task displayed greater persistence when working independently on a challenging puzzle, while children of highly directive mothers displayed lower levels of persistence. For typically developing children, persistence was unrelated to maternal style, suggesting that mother behaviors may have different causes or consequences in the two groups.

Grandparenting a child with a disability: An emotional rollercoaster.

Objectives: As our knowledge about the experiences of grandparents when their grandchild has a disability is extremely limited, the purpose of this research was to explore the emotional journey of Australian grandparents. Method: This qualitative research utilised purposive sampling and semi-structured in-depth interviews to explore the experiences of 22 Australian grandparents, whose grandchild had been diagnosed with a disability. Results: Three key themes characterised grandparent’s emotional journey: Adjusting (the transition from anger to acceptance), The ‘Double Grief’ (sadness about what might have been for both their child and grandchild) and Pride in Family (pride in family’s ability to adjust to the challenges of the situation). Conclusion: As the first Australian study to explore the experiences of grandparents when their grandchild has a disability, the research provides important new knowledge about the emotional journey for grandparents. Unlike overseas research, Australian grandparents view themselves as being there to support their own children, rather than ‘holding the family together’. The findings will inform current policy debates about the role of grandparents and highlight the importance of support services that help facilitate grandparent’s role within their family

Parent and child experiences of childhood cancer : an interpretative phenomenological analysis approach

A diagnosis of cancer represents a significant crisis for the child and their family. As the treatment for childhood cancer has improved dramatically over the past three decades, most children diagnosed with cancer today survive this illness. However, it is still an illness which severely disrupts the lifestyle and typical functioning of the family unit. Most treatments for cancer involve lengthy hospital stays, the endurance of painful procedures and harsh side effects. Research has confirmed that to manage and adapt to such a crisis, families must undertake measures which assist their adjustment. Variables such as level of family support, quality of parents’ marital relationship, coping of other family members, lack of other concurrent stresses and open communication within the family have been identified as influences on how well families adjust to a diagnosis of childhood cancer. Theoretical frameworks such as the Resiliency Model of Family Adjustment and Adaptation (McCubbin and McCubbin, 1993, 1996) and the Stress and Coping Model by Lazarus and Folkman (1984) have been used to explain how families and individuals adapt to crises or adverse circumstances. Developmental theories have also been posed to account for how children come to understand and learn about the concept of illness. However more descriptive information about how families and children in particular, experience and manage a diagnosis of cancer is still needed. There are still many unanswered questions surrounding how a child adapts to, understands and makes meaning from having a life-threatening illness. As a result, developing an understanding of the impact that such a serious illness has on the child and their family is crucial. A new approach to examining childhood illness such as cancer is currently underway which allows for a greater understanding of the experience of childhood cancer to be achieved. This new approach invites a phenomenological method to investigate the perspectives of those affected by childhood cancer. In the current study 9 families in which there was a diagnosis of childhood cancer were interviewed twice over a 12 month period. Using the qualitative methodology of Interpretative Phenomenological Analysis (IPA) a semi-structured interview was used to explicate the experience of childhood cancer from both the parent and child’s perspectives. A number of quantitative measures were also administered to gather specific information on the demographics of the sample population. The results of this study revealed a number of pertinent areas which need to be considered when treating such families. More importantly experiences were explicated which revealed vital phenomena that needs to be added to extend current theoretical frameworks. Parents identified the time of the diagnosis as the hardest part of their entire experience. Parents experienced an internal struggle when they were forced to come to the realization that they were not able to help their child get well. Families demonstrated an enormous ability to develop a new lifestyle which accommodated the needs of the sick child, as the sick child became the focus of their lives. Regarding the children, many of them accepted their diagnosis without complaint or question, and they were able to recognise and appreciate the support they received. Physical pain was definitely a component of the children’s experience however the emotional strain of loss of peer contact seemed just as severe. Changes over time were also noted as both parental and child experiences were often pertinent to the stage of treatment the child had reached. The approach used in this study allowed for rich and intimate detail about a sensitive issue to be revealed. Such an approach also allowed for the experience of childhood cancer on parents and the children to be more fully realised. Only now can a comprehensive and sensitive medical and psychosocial approach to the child and family be developed. For example, families may benefit from extra support at the time of diagnosis as this was identified as one of the most difficult periods. Parents may also require counselling support in coming to terms with their lack of ability to help their child heal. Given the ease at which children accepted their diagnosis, we need to question whether children are more receptive to adversity. Yet the emotional struggle children battled as a result of their illness also needs to be addressed.

Shifting the child protection juggernaut to earlier intervention

"For every complex problem there is a solution that is simple, neat and wrong (M.L. Mencken, US writer and social commentator). Nowhere is this quote more apt than when applied to finding over-simplified solutions to the complex problem of looking after the safety and well-being of vulnerable children. The easiest formula is, of course, to ‘rescue children from dysfunctional families’, a line taken recently in the monograph by the right wing think tank, Centre for Independent Studies (Sammut & O’Brien 2009). It is reasoning with fatal flaws. This commentary provides a timely reminder of the strong arguments which lie behind the national and international shift to supporting children and families through universal and specialist community-based services, rather than weighting all resources into statutory child protection interventions. A brief outline of the value of developing the resources to support children in their families, and the problems with 'rescuing' children through the child protection system are discussed.

The development and validation of Australian Indices of Child Development — Part I: conceptualisation and development

The Longitudinal Study of Australian Children (LSAC) is a major national study examining the lives of Australian children, using a cross-sequential cohort design and data from parents, children, and teachers for 5,107 infants (3–19 months) and 4,983 children (4–5 years). Its data are publicly accessible and are used by researchers from many disciplinary backgrounds. It contains multiple measures of children’s developmental outcomes as well as a broad range of information on the contexts of their lives. This paper reports on the development of summary outcome indices of child development using the LSAC data. The indices were developed to fill the need for indicators suitable for use by diverse data users in order to guide government policy and interventions which support young children’s optimal development. The concepts underpinning the indices and the methods of their development are presented. Two outcome indices (infant and child) were developed, each consisting of three domains—health and physical development, social and emotional functioning, and learning competency. A total of 16 measures are used to make up these three domains in the Outcome Index for the Child Cohort and six measures for the Infant Cohort. These measures are described and evidence supporting the structure of the domains and their underlying latent constructs is provided for both cohorts. The factorial structure of the Outcome Index is adequate for both cohorts, but was stronger for the child than infant cohort. It is concluded that the LSAC Outcome Index is a parsimonious measure representing the major components of development which is suitable for non-specialist data users. A companion paper (Sanson et al. 2010) presents evidence of the validity of the Index.

Parental physical activity : exploring the role of social support

Objectives: To explore the influence of social support on parental physical activity (PA). Methods: Forty parents (21 mothers, 19 fathers) participated in semistructured individual or group interviews. Data were analyzed using thematic content analysis.---------- Results: Instrumental (eg, providing child care, taking over chores), emotional (eg, encouragement, companionship), and informational support (eg, ideas and advice) as well as reciprocal support (eg, giving as well as receiving support) and autonomy support (eg, respecting one’s choices) are important for parents’ PA behavior. However, having support for being active is not straightforward in that many parents discussed issues that inhibited the facilitative nature of social support for PA performance (eg, guilt in getting help). Conclusions: Results highlight the complex nature of social support in facilitating parental PA.

‘Keep telling until someone listens’ : understanding prevention concepts in children’s picture books dealing with child sexual abuse

Children’s picture books dealing with the topic of child sexual abuse appeared in the 1980s with the aim of addressing the need for age-appropriate texts to teach sexual abuse prevention concepts and to provide support for young children who may be at risk of or have already experienced sexual abuse. Despite the apparent potential of children’s picture books to convey child sexual abuse prevention concepts, very few studies have addressed the topic of child sexual abuse in children’s literature. This article critically examines a selection of 15 picture books (published in the US, Canada and Australia) for children aged 3–8 years dealing with this theme. It makes use of an established set of evaluative criteria to conduct an audit of the books’ content and applies techniques of literary discourse analysis to explain how these picture books satisfy criteria for child sexual abuse prevention. The analysis is used as a way to understand the discourses available to readers, both adults and children, on the topic of child sexual abuse. Key themes in the books include children’s empowerment and agency, and the need for persistence and hope.

Combining the parts to make the whole : integrated child and family services in Queensland

Over the past decade, the promotion of 'integrated child and family services' has emerged as a strong and consistent theme within Australian early childhood policy. Fuelling this trend is the belief that integrated service provision is more responsive to holistic family needs, offering better support to parents and thereby promoting better outcomes for young children. Adding further strength is the prevention and early intervention literature, and suggested social and economic benefits of 'effective' early years services and supports. States and territories are introducing new integrated child and family service models and Reflections is continuing to profile these. In this edition, we look at directions and new service models in Queensland, in particular, the new Early Years Centre service model.

Promoting child protection : early childhood education and care services playing their part

Over recent years, there has been a shift in government social policy in Australia toward interest and investment in family support, prevention and early intervention. Central to this new approach to supporting families and promoting better outcomes for children is the development of a continuum of services able to respond to different and changing family needs. This continuum or integrated service system seeks to better connect key human services, such as health, child care, education and family support. This paper explores the role of early childhood education and care (ECEC) services in promoting child protection and strengthening the safety and wellbeing of children.

Advice-implicative interrogatives : building 'client-centered" support in a children's helpline

Interactional research on advice giving has described advice as normative and asymmetric. In this paper we examine how these dimensions of advice are softened by counselors on a helpline for children and young people through the use of questions. Through what we term ‘‘adviceimplicative interrogatives,’’ counselors ask clients about the relevance or applicability of a possible future course of action. The allusion to this possible action by the counselor identifies it as normatively relevant, and displays the counselor’s epistemic authority in relation to dealing with a client’s problems. However, the interrogative format mitigates the normative and asymmetric dimensions typical of advice sequences by orienting to the client’s epistemic authority in relation to their own lives, and delivering advice in a way that is contingent upon the client’s accounts of their experiences, capacities, and understandings. The demonstration of the use of questions in advice sequences offers an interactional specification of the ‘‘client-centered’’ support that is characteristic of prevailing counseling practice. More specifically, it shows how the values of empowerment and child-centered practice, which underpin services such as Kids Helpline, are embodied in specific interactional devices. Detailed descriptions of this interactional practice offer fresh insights into the use of interrogatives in counseling contexts, and provide practitioners with new ways of thinking about, and discussing, their current practices.