The young child’s experiences of living with cancer are crucial to providing evidence based care. The overall aim of this thesis was to explore and describe experiences of health and functioning in the everyday life of young children with cancer, over a three year period from diagnosis, to provide insights and suggestions to improve evidence based care. The first and second papers in the series of four for this thesis used a qualitative content analysis to describe the child’s experiences shortly after diagnosis and six and 12 months later. The third paper used mixed methods to identify a comprehensive set of ICF-CY codes describing everyday health and functioning in the life of the young child with cancer. The fourth paper used the identified comprehensive set of ICF-CY codes to follow changes in everyday health and functioning over the study’s entire three year period from diagnosis. Entry into the health-illness transition was characterised by trauma and isolation. Health and functioning in everyday life was utterly changed and physical difficulties were at their peak. The passage through transition was characterised by an active striving on the part of the child to make a normal everyday life of the cancer experience. Difficulties affecting health and functioning in everyday life decreased and changed during the trajectory, though feelings of loneliness prevailed. A new period of stability in the child’s post treatment life was seen from two years after diagnosis and onwards, with (re)-entry to preschool/school and other social activities. However, an increase in difficulties with personal interactions with others and access to, and support from healthcare professionals was seen. Variances were seen within individual children’s’ trajectories. In summary it can be stated that the everyday life of young children with cancer changes over time and health care services are not always in phase with these changes. Young children living with cancer want to be participatory in their care and to have access to their parents as protectors. They need access to and ongoing contact with peers and preschool. Although physical difficulties in living an everyday life with cancer reduce over time, new difficulties emerge as the child post cancer treatment re-enters society. A structured follow-up throughout the cancer trajectory and not just during active treatment is necessary. A child-centered philosophy of care would guide the child towards attainment of health and well-being. Both the child’s own perspective and a child’s perspective as described by adults caring for them should be seen on a continuum, rather than as opposites. This view could help ensure that young children become visible and are listened to as valuable contributors to care planning. Knowledge of health-illness transition can be useful in illustrating everyday health and functioning through long term illness trajectories.

The young child’s experiences of living with cancer are crucial to providing evidence based care. The overall aim of this thesis was to explore and describe experiences of health and functioning in the everyday life of young children with cancer, over a three year period from diagnosis, to provide insights and suggestions to improve evidence based care. The first and second papers in the series of four for this thesis used a qualitative content analysis to describe the child’s experiences shortly after diagnosis and six and 12 months later. The third paper used mixed methods to identify a comprehensive set of ICF-CY codes describing everyday health and functioning in the life of the young child with cancer. The fourth paper used the identified comprehensive set of ICF-CY codes to follow changes in everyday health and functioning over the study’s entire three year period from diagnosis. Entry into the health-illness transition was characterised by trauma and isolation. Health and functioning in everyday life was utterly changed and physical difficulties were at their peak. The passage through transition was characterised by an active striving on the part of the child to make a normal everyday life of the cancer experience. Difficulties affecting health and functioning in everyday life decreased and changed during the trajectory, though feelings of loneliness prevailed. A new period of stability in the child’s post treatment life was seen from two years after diagnosis and onwards, with (re)-entry to preschool/school and other social activities. However, an increase in difficulties with personal interactions with others and access to, and support from healthcare professionals was seen. Variances were seen within individual children’s’ trajectories. In summary it can be stated that the everyday life of young children with cancer changes over time and health care services are not always in phase with these changes. Young children living with cancer want to be participatory in their care and to have access to their parents as protectors. They need access to and ongoing contact with peers and preschool. Although physical difficulties in living an everyday life with cancer reduce over time, new difficulties emerge as the child post cancer treatment re-enters society. A structured follow-up throughout the cancer trajectory and not just during active treatment is necessary. A child-centered philosophy of care would guide the child towards attainment of health and well-being. Both the child’s own perspective and a child’s perspective as described by adults caring for them should be seen on a continuum, rather than as opposites. This view could help ensure that young children become visible and are listened to as valuable contributors to care planning. Knowledge of health-illness transition can be useful in illustrating everyday health and functioning through long term illness trajectories.

Technological advances during the past 30 years have dramatically improved survival rates for children with life-threatening conditions (preterm births, congenital anomalies, disease, or injury) resulting in children with special health care needs (CSHCN), children who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who require health and related services beyond that required by children generally. There are approximately 10.2 million of these children in the United States or one in five households with a child with special health care needs. Care for these children is limited to home care, medical day care (Prescribed Pediatric Extended Care; P-PEC) or a long term care (LTC) facility. There is very limited research examining health outcomes of CSHCN and their families. The purpose of this research was to compare the effects of home care settings, P-PEC settings, and LTC settings on child health and functioning, family health and function, and health care service use of families with CSHCN. Eighty four CSHCN ages 2 to 21 years having a medically fragile or complex medical condition that required continual monitoring were enrolled with their parents/guardians. Interviews were conducted monthly for five months using the PedsQL TM Generic Core Module for child health and functioning, PedsQL TM Family Impact Module for family health and functioning, and Access to Care from the NS-CSHCN survey for health care services. Descriptive statistics, chi square, and ANCOVA were conducted to determine differences across care settings. Children in the P-PEC settings had a highest health care quality of life (HRQL) overall including physical and psychosocial functioning. Parents/guardians with CSHCN in LTC had the highest HRQL including having time and energy for a social life and employment. Parents/guardians with CSHCN in home care settings had the poorest HRQL including physical and psychosocial functioning with cognitive difficulties, difficulties with worry, communication, and daily activities. They had the fewest hours of employment and the most hours providing direct care for their children. Overall health care service use was the same across the care settings.

Introduction Child sexual abuse is a common problem. Psychological and behavioural problems in children and adults who have experienced child sexual abuse have been associated with the abuse. Little research has been conducted which has been long-term, prospective, involved substantiated sexual abuse, included a control group, took into account mediating factors, utilised multiple data sources, relied on standardised measures and had a high follow-up rate. Aim The aims of this study were to compare a cohort of sexually abused young people with a group of nonabused peers and to establish predictors of psychological and behavioural outcome. Method This study was a follow-up which was long-term, prospective, involved a sample of children with substantiated sexual abuse, included a control group, took into account mediating factors, utilised multiple data sources, relied on standardised measures and had a high follow-up rate. Eighty-four sexually abused young people were followed up five years after presenting to Children�s Hospitals� Child Protection Units for sexual abuse and were compared to a group of 84 nonabused young people of similar age and sex. The two groups were compared on the basis of demographic variables, family functioning, mother�s mental health and life events; the outcome measures of depression, self-esteem, anxiety, behaviour, criminal activity, alcohol and other drug use, eating problems, running away, suicide attempts, self-injury, hopefulness, despair and attributional style; and potential mediating factors such as further notifications to the Department of Community Services, receipt of psychological treatment, legal action against offenders and victims compensation. Potential predictors of outcome were (1) demographic variables, (2) sexual abuse characteristcs, (3) intake data and (4) five year follow-up variables. Main findings Follow-up rates were 81percent (n equals 68) for cases and 89percent (n equals 75) for controls. Five years after presenting for the sexual abuse, the sexually abused young people were performing more poorly than their nonabused peers on various measures of psychological state and behaviour. Although the abused children had experienced more negative life events (p<.001), were from lower socio-economic groups (p<.0001), had more changes in parent figures (p<.001) and had mothers who were more psychologically distressed (p equals .03), multiple regression analysis showed that after allowing for these and other demographic and family factors, there were still significant differences between the groups after the 5 years. The abused children displayed more disturbed behavior (p equals .002), had lower self-esteem (p<.001), were more depressed or unhappy (p<.001) and were more anxious (p equals .03) than controls. Sexually abused children had significantly higher levels of bingeing (p equals .02), self-injury (p equals.009) and suicide attempts (p equals .03). Significant predictors of psychological and behavioural outcome were significantly related to family and parent functioning variables. Abuse status was not a significant predictor when offered to each of the predictive models. Significant predictors of outcome included the following intake variables: family functioning, mother�s mental health, whether parents were employed or not, behaviour scores, prior notifications for neglect, history of parental discord and whether there were caregiver changes or not prior to intake. The classification of the index sexual abuse event as indecent assault and whether there were notifications for sexual abuse prior to the index event also significantly predicted outcome. Five year follow-up variables which were significant predictors of outcome were the young person�s age, number of negative life events, attributional style, self-esteem, depression, number of parent changes, anxiety, despair, whether there were notifications for abuse/neglect after intake and having a parent with a history of drug/alcohol problems. Conclusions Difficulties associated with child sexual abuse continue for some years after the abuse event. Child sexual abuse needs to be considered as a possible antecedent of behaviour and psychological difficulties in young people. Treatment and monitoring should continue for some years after the abuse. Treatment may need to be directed more towards young people�s psychological states rather than focusing specifically on the sexual abuse. Family and parent functioning may need to be addressed early in order to prevent some of the behavioural and psychological difficulties associated with the long-term outcome of child sexual abuse.

Introduction Child sexual abuse is a common problem. Psychological and behavioural problems in children and adults who have experienced child sexual abuse have been associated with the abuse. Little research has been conducted which has been long-term, prospective, involved substantiated sexual abuse, included a control group, took into account mediating factors, utilised multiple data sources, relied on standardised measures and had a high follow-up rate. Aim The aims of this study were to compare a cohort of sexually abused young people with a group of nonabused peers and to establish predictors of psychological and behavioural outcome. Method This study was a follow-up which was long-term, prospective, involved a sample of children with substantiated sexual abuse, included a control group, took into account mediating factors, utilised multiple data sources, relied on standardised measures and had a high follow-up rate. Eighty-four sexually abused young people were followed up five years after presenting to Children�s Hospitals� Child Protection Units for sexual abuse and were compared to a group of 84 nonabused young people of similar age and sex. The two groups were compared on the basis of demographic variables, family functioning, mother�s mental health and life events; the outcome measures of depression, self-esteem, anxiety, behaviour, criminal activity, alcohol and other drug use, eating problems, running away, suicide attempts, self-injury, hopefulness, despair and attributional style; and potential mediating factors such as further notifications to the Department of Community Services, receipt of psychological treatment, legal action against offenders and victims compensation. Potential predictors of outcome were (1) demographic variables, (2) sexual abuse characteristcs, (3) intake data and (4) five year follow-up variables. Main findings Follow-up rates were 81percent (n equals 68) for cases and 89percent (n equals 75) for controls. Five years after presenting for the sexual abuse, the sexually abused young people were performing more poorly than their nonabused peers on various measures of psychological state and behaviour. Although the abused children had experienced more negative life events (p<.001), were from lower socio-economic groups (p<.0001), had more changes in parent figures (p<.001) and had mothers who were more psychologically distressed (p equals .03), multiple regression analysis showed that after allowing for these and other demographic and family factors, there were still significant differences between the groups after the 5 years. The abused children displayed more disturbed behavior (p equals .002), had lower self-esteem (p<.001), were more depressed or unhappy (p<.001) and were more anxious (p equals .03) than controls. Sexually abused children had significantly higher levels of bingeing (p equals .02), self-injury (p equals.009) and suicide attempts (p equals .03). Significant predictors of psychological and behavioural outcome were significantly related to family and parent functioning variables. Abuse status was not a significant predictor when offered to each of the predictive models. Significant predictors of outcome included the following intake variables: family functioning, mother�s mental health, whether parents were employed or not, behaviour scores, prior notifications for neglect, history of parental discord and whether there were caregiver changes or not prior to intake. The classification of the index sexual abuse event as indecent assault and whether there were notifications for sexual abuse prior to the index event also significantly predicted outcome. Five year follow-up variables which were significant predictors of outcome were the young person�s age, number of negative life events, attributional style, self-esteem, depression, number of parent changes, anxiety, despair, whether there were notifications for abuse/neglect after intake and having a parent with a history of drug/alcohol problems. Conclusions Difficulties associated with child sexual abuse continue for some years after the abuse event. Child sexual abuse needs to be considered as a possible antecedent of behaviour and psychological difficulties in young people. Treatment and monitoring should continue for some years after the abuse. Treatment may need to be directed more towards young people�s psychological states rather than focusing specifically on the sexual abuse. Family and parent functioning may need to be addressed early in order to prevent some of the behavioural and psychological difficulties associated with the long-term outcome of child sexual abuse.