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.

The impact of child sexual abuse on victims/survivors: Exploring posttraumatic outcomes as a function of childhood sexual abuse

There is sparse systematic examination of the potential for growth as well as distress that may occur for some adult survivors of childhood sexual abuse. The presented study explored posttraumatic growth and its relationship with negative posttrauma outcomes within the specific population of survivors of childhood sexual abuse (N = 40). Results showed that 95% of the participants experienced clinically significant post-traumatic stress disorder symptomatology related to their childhood sexual abuse. In conjunction with these high levels of negative symptoms, the population evidenced posttraumatic growth levels that were comparable to other trauma samples. This research has clinical relevance in terms of adding to the knowledge base on sexual abuse and the usefulness of this knowledge in therapeutic interventions and relationships.

Using resilience to reconceptualise child protection workforce capacity

Current approaches to managing and supporting staff and addressing turnover in child protection predominantly rely on deficit-based models that focus on limitations, shortcomings, and psychopathology. This article explores an alternative approach, drawing on models of resilience, which is an emerging field linked to trauma and adversity. To date, the concept of resilience has seen limited application to staff and employment issues. In child protection, staff typically face a range of adverse and traumatic experiences that have flow-on implications, creating difficulties for staff recruitment and retention and reduced service quality. This article commences with discussion of the multifactorial influences of the troubled state of contemporary child protection systems on staffing problems. Links between these and difficulties with the predominant deficit models are then considered. The article concludes with a discussion of the relevance and utility of resilience models in developing alternative approaches to child protection staffing issues.

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 utility and challenges of using ICD codes in child maltreatment research : a review of existing literature

Objective: The objectives of this article are to explore the extent to which the International Statistical Classification of Diseases and Related Health Problems (ICD) has been used in child abuse research, to describe how the ICD system has been applied and to assess factors affecting the reliability of ICD coded data in child abuse research.----- Methods: PubMed, CINAHL, PsychInfo and Google Scholar were searched for peer reviewed articles written since 1989 that used ICD as the classification system to identify cases and research child abuse using health databases. Snowballing strategies were also employed by searching the bibliographies of retrieved references to identify relevant associated articles. The papers identified through the search were independently screened by two authors for inclusion, resulting in 47 studies selected for the review. Due to heterogeneity of studies metaanalysis was not performed.----- Results: This paper highlights both utility and limitations of ICD coded data. ICD codes have been widely used to conduct research into child maltreatment in health data systems. The codes appear to be used primarily to determine child maltreatment patterns within identified diagnoses or to identify child maltreatment cases for research.----- Conclusions: A significant impediment to the use of ICD codes in child maltreatment research is the under-ascertainment of child maltreatment by using coded data alone. This is most clearly identified and, to some degree, quantified, in research where data linkage is used. Practice Implications: The importance of improved child maltreatment identification will assist in identifying risk factors and creating programs that can prevent and treat child maltreatment and assist in meeting reporting obligations under the CRC.

Patterns of reporting to child protection services in Canada by healthcare and nonhealthcare professionals

Background: All Canadian jurisdictions require certain professionals to report suspected or observed child maltreatment. This study examined the types of maltreatment, level of harm and child functioning issues, controlling for family socioeconomic status, age and gender of the child reported by healthcare and non-healthcare professionals. Methods: We conducted chi-square analyses and logistic regression on a national child welfare sample from the 2003 Canadian Incidence Study of Reported Child Abuse and Neglect (CIS-2003) and compared the differences in professional reporting with its previous cycle (CIS-1998) using Bonferroni-corrected confidence intervals. Results: Our analysis of CIS-2003 data revealed that the majority of substantiated child maltreatment is reported to service agencies by non-healthcare professionals (57%), followed by non-professionals (33%) and healthcare professionals (10%). The number of professional reports increased 2.5 times between CIS-1998 and CIS-2003, while non-professionals’ increased 1.7 times. Of the total investigations, professional reports represented 59% in CIS-1998 and 67% in CIS-2003 (p<0.001). Compared to non-healthcare professionals, healthcare professionals more often reported younger children, children who experienced neglect and emotional maltreatment and those assessed as suffering harm and child functioning issues, but less often exposure to domestic violence. Conclusion: The results indicate that healthcare professionals played an important role in identifying children in need of protection considering harm and other child functioning issues. The authors discuss the reasons why underreporting is likely to remain an issue.

Responding to child maltreatment

This refereed correspondence responds to claims made in an article published in the Lancet in December 2008 regarding the nature of mandatory reporting laws, and their benefits and disadvantages for child protection.

Developments in Australian laws requiring the reporting of suspected child sexual abuse

Thousands of Australian children are sexually abused every year, and the effects can be severe and long lasting. Not only is child sexual abuse a public health problem, but the acts inflicted are criminal offences. Child sexual abuse usually occurs in private, typically involving relationships featuring a massive imbalance in power and an abuse of that power. Those who inflict child sexual abuse seek to keep it secret, whether by threats or more subtle persuasion. As a method of responding to this phenomenon and in an effort to uncover cases of sexual abuse that otherwise would not come to light, governments in Australian States and Territories have enacted legislation requiring designated persons to report suspected child sexual abuse. With Western Australia’s new legislation having commenced on 1 January 2009, every Australian State and Territory government has now passed these laws, so that there is now, for the first time, an almost harmonious legislative approach across Australia to the reporting of child sexual abuse. Yet there remain differences in the State and Territory laws regarding who has to make reports, which cases of sexual abuse are required to be reported, and whether suspected future abuse must be reported. These differences indicate that further refinement of the laws is required

The development and validation of Australian indices of child development - Part II : validity support

The two outcome indices described in a companion paper (Sanson et al., Child Indicators Research, 2009) were developed using data from the Longitudinal Study of Australian Children (LSAC). These indices, one for infants and the other for 4 year to 5 year old children, were designed to fill the need for parsimonious measures of children’s developmental status to be used in analyses by a broad range of data users and to guide government policy and interventions to support young children’s optimal development. This paper presents evidence from Wave 1data from LSAC to support the validity of these indices and their three domain scores of Physical, Social/Emotional, and Learning. Relationships between the indices and child, maternal, family, and neighborhood factors which are known to relate concurrently to child outcomes were examined. Meaningful associations were found with the selected variables, thereby demonstrating the usefulness of the outcome indices as tools for understanding children’s development in their family and socio-cultural contexts. It is concluded that the outcome indices are valuable tools for increasing understanding of influences on children’s development, and for guiding policy and practice to optimize children’s life chances.

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.

Impact of music therapy to promote positive parenting and child development

The effectiveness of a 10-week group music therapy program for marginalized parents and their children aged 0–5 years was examined. Musical activities were used to promote positive parent–child relationships and children’s behavioral, communicative and social development. Participants were 358 parents and children from families facing social disadvantage, young parents or parents of a child with a disability. Significant improvements were found for therapist-observed parent and child behaviors, and parent-reported irritable parenting, educational activities in the home, parent mental health and child communication and social play skills. This study provides evidence of the potential effectiveness of music therapy for early intervention.