Maria McCarthy

CHILDHOOD CANCER: Its Impact and Financial Costs for Australian Families

This study evaluated the impact and financial costs of childhood cancer for Australian families by means of a nonrandomized retrospective cross-sectional survey at the oncology department of a large metropolitan pediatric hospital. The Family Impact Scale (a standardized questionnaire) and the self-reported economic burden (a questionnaire on expenses and lifestyle changes) were utilized. Results of the family impact score were compared to a previously published cohort of children with insulin-dependent diabetes mellitus. The participants were 56 parents of children newly diagnosed with cancer in the year 2002. In addition to the expected high social and emotional impacts, the majority of families reported suffering from great or moderate economic hardship. Factors predictive for families at risk included single parenthood, lower household income, and greater distance from the hospital. The results show that the distribution of resources is not equitable and is currently failing to negate significant financial stresses for many Australian families.

Gender differences in the psychosocial experience of parents of children with cancer: a review of the literature

Objective: To build a descriptive literature base of investigated and identified gender differences in the psychosocial experience of parents of children with cancer, in order to guide future research in this area.

Predictors of Acute and Posttraumatic Stress Symptoms in Parents Following Their Child's Cancer Diagnosis

This longitudinal study aimed to examine acute and posttraumatic stress symptoms and predictors of traumatic stress symptoms in parents of children recently diagnosed with cancer. The sample comprised 220 parents of 143 children who completed questionnaires at diagnosis (T1) focused on acute stress disorder (ASD); of these, 145 parents of 97 children completed questionnaires 6-8 months later (T2) focused on posttraumatic stress disorder (PTSD). Demographic, psychosocial, and treatment and illness variables were predictors. Results were that 63% of mothers and 60% of fathers met criteria for ASD at T1. At T2, 21% of mothers and 16% of fathers met criteria for PTSD, with 40% of parents reporting significant subthreshold symptoms. Predictors of ASD symptoms were female gender, presence of psychosocial risk factors, trait anxiety, family functioning, and central nervous system tumor diagnosis. Risk factors for PTSD symptoms were younger maternal age, severity of ASD symptoms, and trait anxiety at T1, and parent-reported quality of life of the child at T2. The results suggest that screening for ASD may help identify parents at increased risk of persistent traumatic stress symptoms who could benefit from preventative, evidence-based psychosocial interventions.

Parent distress reactions following a serious illness or injury in their child: a protocol paper for the take a breath cohort study

BackgroundDiagnosis of life threatening childhood illness or injury can lead to significant distress reactions in parents, with many experiencing clinically significant levels of post-traumatic stress symptoms. These symptoms can have long-term adverse impacts on parent mental health, family functioning, and the adjustment of the ill child. Independent studies have found such reactions in several different illness groups. However, very little research has systematically compared the prevalence, impact and trajectories over time of post-traumatic stress symptoms in parents across different childhood illness groups with an acute life threat. The current study seeks to map the course of post-traumatic stress reactions in parents of children with various life threatening illnesses over an 18 month period, and identify factors that predict successful adaptation in families.Method/DesignThe current study described is of a prospective, longitudinal design. The sample included parents of children admitted to four major hospital departments at the Royal Children’s Hospital, Melbourne, Australia, for a life threatening illness or injury. Eligible parents were those who were caregivers of children aged 0-to 18-years admitted to the Oncology, Cardiology, Neurology and Pediatric Intensive Care Unit. Parents were recruited acutely, and completed self-report questionnaires at four time-points: within the first 4 weeks (T1:); then at 4 months (T2); 7 months (T3); and 19 months (T4) after admission. Questionnaires assessed parent and child mental health and wellbeing, and a number of risk and reliance factors such child illness factors, parent demographic factors, and psychosocial factors.DiscussionThis study is one of the first to document the trajectory of post-traumatic stress responses in parents of very ill children, across illness groups. Given that it will also identify risk and resilience factors, and map the course of parent outcomes over an 18 monthperiod, it has the potential to inform novel strategies for intervention.

Behavioral side effects of pediatric acute lymphoblastic leukemia treatment: the role of parenting strategies.

Behavioral and emotional difficulties are a recognised side effect of childhood acute lymphoblastic leukemia (ALL) treatment. Modifiable factors, such as parenting strategies, may be an appropriate target for interventions to assist families with managing their childs behavior, potentially leading to improved psychosocial and clinical outcomes. This study examined whether parenting strategies are associated with child behavioral and emotional problems in a pediatric oncology context, with the aim of establishing whether parenting is a potential modifiable target for psychosocial intervention.

Motor functioning during and following treatment with chemotherapy for pediatric acute lymphoblastic leukemia

This systematic review evaluated empirical studies examining motor skills in children during and following treatment for acute lymphoblastic leukemia. Most studies indicated that children on‐treatment display poorer gross and fine motor abilities than healthy peers, but generally have intact visual‐motor integration skills. Studies have reported gross motor difficulties in 5–54% of survivors. There is some limited evidence for long‐term fine motor deficits. The evidence for visual‐motor integration difficulties in the survivor population is less consistent. Larger studies with a longitudinal design are needed to further specify the onset and timing of motor difficulties and ascertain risk factors. Pediatr Blood Cancer 2013;60:1261–1266.

Parenting a child with cancer: Perceptions of adolescents and parents of adolescents and younger children following completion of childhood cancer treatment

Abstract Objective: Research examining the impact of childhood cancer on parenting is limited. This qualitative study explored perceptions from adolescents and parents of the impact of childhood cancer on parenting 2–5 years post-end of treatment. Methods: Fifty-seven semi-structured interviews were conducted with: (a) 14 parents of preadolescent children (the ‘parents of children’ group); and (b) 21 adolescents and 22 parents of adolescents (the ‘adolescents and their parents’ group; N = 43). Inductive thematic analysis was used to identify and interpret themes. Results: Six main themes emerged: (1) Parenting strategies: relaxing discipline, bribing and spoiling children; (2) Regressive parenting; (3) Structured parenting: keeping up a ‘normal’ routine; (4) Intimacy, closeness and emotional support; (5) Differential parenting; and (6) Parental protectiveness. Some themes were group specific, whilst other themes emerged for both the ‘parents of children’ and ‘adolescents and their parents’ groups. Some reports of parenting were associated with initial stages of cancer whereas other aspects of parenting attitudes and behaviours appeared to exist after the demands of diagnosis and treatment. This suggests that there is some overlap in the parenting strategies used during ‘active’ stages of the disease and survivorship. Conclusion: Our results highlight the importance of understanding parenting processes that can operate throughout the disease trajectory for families experiencing paediatric cancer. Parenting is an ongoing process and as such, parenting intervention efforts should not be limited to the active treatment phase of a child’s diagnosis.

Comfort First: an evaluation of a procedural pain management programme for children with cancer.

The Comfort First Program (CFP) provides children and their caregivers with early procedural pain management intervention to reduce procedural pain and distress. This study evaluated whether the CFP was meeting its goals and effectively implementing the Royal Australasian College of Physicians paediatric pain management guidelines.

Gross and fine motor skills in children treated for acute lymphoblastic leukaemia

Objective: Chemotherapy treatment for acute lymphoblastic leukaemia (ALL) may disrupt motor development, with suggestions that gross and fine motor deficits are different depending on time since treatment. Methods: Thirty-seven participants aged between 2.5 to 5 years at the time of diagnosis were assessed using the Movement Assessment Battery for Children, 2nd Edition (MABC-2) and the Bruininks–Oseretsky Test of Motor Proficiency, 2nd Edition, Short Form (BOT-2 SF), and divided into groups (i.e. months-off-treatment): (1) 0–12, (2) 13–24, and (3) 25–60 for comparison. Results: MABC-2 and BOT-2 SF mean total scores fell within the average range. Twenty-six percent of the sample performed in the impaired range on the MABC-2. Group 2 had significantly lower Manual Dexterity scores than the normative population and lower BOT-2 SF scores than Group 1. Conclusion: Most children treated for ALL display appropriate motor skills, yet around a quarter experience general motor difficulties. Time-off-treatment did not affect the prevalence of motor impairments on any measure.

Work-related stress and reward: an Australian study of multidisciplinary pediatric oncology healthcare providers.

Managing staff stress and preventing long‐term burnout in oncology staff are highly important for both staff and patient well‐being. Research addressing work‐related stress in adult oncology is well documented; however, less is known about this topic in the pediatric context. This study examined sources of work‐related stress and reward specific to multidisciplinary staff working in pediatric oncology in Australia.