Ethical issues in pediatric life-threatening illness: dilemmas of consent, assent, and communication

The treatment of life-threatening illnesses in childhood is replete with ethical issues and with clinical issues that have ethical implications. The central issues are those involved with a child's participation in the decision-making process and with communication of information about the illness and treatments to children. This article examines the questions of patient autonomy and of parental responsibility and prerogative in the context of pediatric oncology. Included in this examination of the ethical dimensions of pediatric life-threatening illness is a discussion of the many related aspects involved, including medical, cultural, psychosocial, legal, and developmental. A multidimensional approach that considers the ways in which these multiple aspects interact with one another, and which focuses on establishing a strong working alliance between the health care team and the pediatric patient's family, can help to avoid or resolve potential ethical and clinical conflicts.     

A place within the heart: finding a home with parental objects

For adopted and Looked After children with compromised early experiences, there can be troubling phantasies and anxieties associated with parental objects. These internal object relations can seriously restrict the development of secure intimate relationships with new parental figures. Adoptive parents and foster carers bear the brunt of the associated difficulties. Clinical work with the child, parents/carers, family, or network, may help processes of containment, differentiation, working through, mourning, and integration. This paper is based on thinking derived from clinical work with children who are adopted or Looked After, and with adoptive parental couples, carers, and networks. The primary focus is on how the child needs to find a ‘psychic home’ in the minds of others for their damaged internal parental objects, and the emotional capacities required in adoptive parents to provide this. I describe some of the complexities for adoptive parents and others in providing what is needed to enable the child to experience their internal parental objects in a fuller way. This process can allow the child to introject, identify with, and re-imagine their internal parental objects, and through this develop a more realistic relationship to their adoptive parents and to their birth parents. It promotes trust, freedom, and emotional depth in the relationship with parental figures.     

The Role of Family Processes and Coping Strategies in the Relationship Between Parental Chronic Illness and Childhood Internalizing Problems

Sixty-nine families (father, mother, and one child) in which the father had hemophilia, approximately half of whom were HIV positive, were assessed in an examination of the relationship between parental chronic illness, family functioning, child coping strategies, and child adjustment. Latent variable path analyses with partial least-squares estimation procedures (PLS) were used to test a model of the relationship between parental chronic illness, family process variables, child coping strategies, and child internalizing behavior problems. The severity of the father's illness predicted family process variables, which predicted the coping style of the child. The use of more avoidant coping strategies was associated with more internalizing problems.     

Vicarious and operant experiences in the etiology of illness behavior: A replication with healthy individuals

The purpose of the present investigation was to replicate a previous study of diabetic patients on the role of parental modeling in the etiology of illness behavior. A random sample of healthy individuals were assigned to an avoidant model (AM) (i.e. parent reported to have avoided work. chores etc. when ill) or non-avoidant model (NAM) group. Subjects subsequently provided retrospective and current information concerning their illness-behavior experiences. The results indicated that individuals with an AM reported more responsibility avoidance when ill currently and as a child compared to the NAM subjects. Additionally. AM subjects reported receiving more positive reinforcement for current illness compared to NAM subjects. It was concluded that the process by which individuals learn to respond to illness may be similar in healthy and chronically-ill individuals but that positive reinforcement for illness may be more likely to be received by healthy individuals during acute illness than by chronically-ill individuals. The present study provides further preliminary support for the learningtheory model of illness behavior.     

The Role of Parental and Adolescent Attributions in Adjustment of Adolescents with Chronic Illness

Previous literature has demonstrated the separate contributions of parental attributions and adolescent attributions to psychosocial adjustment of adolescents with chronic illness. However, it is unknown whether parental attributions affect adolescents' mental health directly or indirectly by influencing the youths' attributional style. This study evaluated the direct and indirect (through adolescent attributions) effects of parental attributions on internalizing and externalizing problems of adolescents with chronic illness. Adolescents (N?=?128; M?=?14.7?years) diagnosed with cystic fibrosis or diabetes and their caregivers completed measures of attributional style and adolescent adjustment. Parents' optimistic attributions were associated with fewer adolescent internalizing and externalizing problems. These effects were partly mediated by adolescent attributions. These results suggest that targeting both adolescent and parent attributions may be important for improving adolescents' adjustment to a chronic illness.     

Group Therapy with Individuals and Families Coping with Illness or Disability in Israel

This paper illustrates a group intervention with individuals and family caregivers coping with illness/disability, and focuses on the relationship between the process of group development and the process of coping with the illness/disability. People experiencing illness/disability cope with a great deal of pressure and stress that stem from the illness's biopsychosocial demands. A group can provide encouragement and support and reduce helplessness, isolation, and despair through cooperation and use of mutual resources. The design of the intervention was based on our clinical experience with numerous groups for ill/disabled individuals or their family. The process is described and analyzed using examples from three documented groups, and is presented in terms of four variables: group process, group atmosphere, group content, and group intervention.     

Youth adjustment to parental illness or disability: the role of illness characteristics, caregiving, and attachment

This study aimed to (1) examine relations between youth adjustment and three sets of predictors: parental illness/disability characteristics, caregiving, and parent-child attachment, and (2) explore differences on these variables between youths of parental physical illness/disability and youths of parental mental illness. Eighty-one youths between 10 and 25 years of a parent with a physical illness/disability (35%) or a mental illness (43%) completed a series of self-report measures assessing perceived characteristics of the parent's illness/disability, caregiving experiences, and adjustment outcomes. Results revealed a set of predictors of poorer youth adjustment: gradual illness/disability onset, being male, isolation, lower perceived maturity, and less choice in caregiving. Youths of parental mental illness differed from youths of parental physical illness/disability on emotional distress (worry and discomfort) dimensions of caregiving. Youth-parent attachment security was associated with youth caregiving and there was a trend for attachment to vary according to parental illness/disability type. Findings highlight young caregiving as an important target for service and policy planning.     

Caregiver Demand and Parent Distress in Juvenile Rheumatic Disease: The Mediating Effect of Parent Attitude Toward Illness

Parents of youth with juvenile rheumatic diseases (JRD) often take on illness management responsibilities that can become burdensome, potentially resulting in poor parent adjustment outcomes. However, not all caregivers will experience increased distress as a result of variability in stress appraisals. The current study examined the role of parent illness attitudes in the relation between perceived caregiver demand and parental distress. Youth (N = 70) ages 7–18 years diagnosed with a JRD and their parents were recruited from a pediatric rheumatology clinic. Parents completed measures of caregiver demand, parental distress, and illness attitudes. Hierarchical regression revealed a relationship between caregiver demand and parental distress. A significant relationship was also found between caregiver demand and parent illness attitudes, as well as parent illness attitudes and parental distress. Thus, parent illness attitudes mediated the relationship between caregiver demand and parental distress. Techniques aimed at altering negative illness attitudes may help parents cope with their caregiving responsibilities.     

Complications in group psychotherapy with AIDS patients

AIDS has a unique set of characteristics that makes group psychotherapy more complex than with other populations: (1) the threat of an early death, (2) a highly variable course of illness, and (3) stigma related to the illness and to the preexisting lifestyles of most patients. The specific ways in which the three factors seriously interfere with establishing and maintaining group cohesion are discussed, and clinical guidelines are suggested. In addition, a model for understanding and working with these and other issues in group psychotherapy, based on Erik Erikson's interpersonal theory of development, is presented. Finally, particular countertransferential difficulties are discussed in relation to the heightened emotionality common to AIDS psychotherapy groups.     

Infantile anorexia,co‐excitation and co‐mastery in the parent/baby cathexis: The contribution of Sigmund and Anna Freud

Recent epidemiological studies show that 2% of babies in ordinary paediatric clinics suffer from infantile anorexia. In the first part of this paper we present a case study from our hospital clinical activity. Our framework combines clinical psychoanalytic sessions and perinatal videos. In the second part, we will focus on the concepts of instinct and excitation proposed by Sigmund Freud and the concept of mastery proposed by Anna Freud. In the third part, we will examine these concepts in the light of the case study. The fourth part is devoted to clinical recommendations from our hospital psychoanalytic practice. In conclusion, unlike other clinical settings, the psychoanalytic setting allows for the elaboration of the parental hatred included in the libidinal cathexis. Our psychoanalytic setting (sessions/videos) makes it possible to decontaminate parental intrapsychic elements overloaded with excitement, saturated with hate elements, and rendered sterile by the instinct for mastery. An initial part of the treatment process involves working through the intersubjective elements observed in the video.     

Working parents of children with behavioral problems: a study on the family-work interface

This study examines the process by which child behavioral problems are related to parents' well-being. We developed a family-work spillover model that was tested among 225 working parents. It was hypothesized that family-self conflict (FSC) mediates the relationship between child behavioral problems and parental strain, and that family-work conflict (FWC) mediates the relationship between parental strain and work engagement. Further, it was hypothesized that social support moderates the relationship between child behavioral problems and FSC. The results of (moderated) structural equation modeling supported the mediating role of FSC and FWC and the moderating role of social support. These findings suggest that the negative effects of raising a child with behavioral problems on parental well-being can be buffered by social support.     

Parentification and its impact on adolescent children of parents with AIDS.

Parentification refers to children or adolescents assuming adult roles before they are emotionally or developmentally ready to manage those roles successfully. We assess predictors and outcomes of parentification among adolescent children of Parents with AIDS (PWAs) in two phases. In Phase 1, relationships among parental AIDS-related illness, parent drug use, parent and adolescent demographics, and parentification indicators (parental, spousal, or adult role-taking) were assessed among 183 adolescent-parent pairs (adolescents: 11 to 18 years, M = 14.8 years, 54% female; parents: 80% female). Adult role-taking was associated with maternal PWAs, female adolescents, and greater parent drug use. Greater parental AIDS-related illness predicted more spousal and parental role-taking. Parent drug use predicted more parental role-taking. In Phase 2, we examined the impact of parentification on later adolescent psychological adjustment (N = 152 adolescents). Adult role-taking predicted more internalized emotional distress; parental role-taking predicted externalized problem behaviors: sexual behavior, alcohol and marijuana use, and conduct problems. Given these dysfunctional outcomes, we discuss interventions to mitigate parentification among children of PWAs.     

Child Perceptions of Parental Care and Overprotection in Children with Cancer and Healthy Children

The primary aims of this study were to: (a) examine child perceptions of overprotection; and (b) explore how these perceptions relate to child health and adjustment. Children with a prior diagnosis of cancer (n = 205) and children without a history of serious illness (n = 76) reported on parental overprotective and caring behaviors. Children with cancer were recruited from one of four strata based on the elapsed time since their cancer diagnosis (1–6 months; 6–24 months; 2–5 years; >5 years) Children also reported on symptoms of depression, anxiety, and posttraumatic stress. Children with cancer did not differ from healthy children in their perceptions of parental care or overprotection. Child distress was more strongly related to perceptions of care and overprotection than child’s health status. Children with cancer do not report their parents approach to care and protection differently than children without a cancer history. These findings mirror prior research examining parental perceptions of overprotection and suggest that, despite the challenges of parenting a child with serious illness, parental protection is not significantly altered.     

Family Process as a Mediator of the Negative Effects of Parental Alcoholism on Young Adult Dating Relationships

The effects of parental alcoholism on young adult dating relationship quality (trust, intimacy, commitment, and satisfaction) were considered in the context of the mediating variable of family process (cohesion, conflict resolution, and family competence). A model was tested with a sample of 287 young adults (95 were adult children of alcoholics) that suggested that healthier family process mediates the negative effects of having an alcoholic parent on dating relationship quality. Structural equation modeling results showed that the model fit the data. Young adults from alcoholic families in which family process was less negatively affected by parental alcoholism were less likely to report lower dating relationship quality than those from families in which family process was more negatively affected by parental alcoholism. Parental divorce was directly related to lower relationship quality. Clinical implications for working with young adult children of alcoholics are discussed.     

The Relation Between Parental Mental Illness and Adolescent Mental Health: The Role of Family Factors

Children of parents with a mental illness are often found to be at high risk of developing psychological problems themselves. Little is known about the role of family factors in the relation between parental and adolescent mental health. The current study focused on parent–child interaction and family environment. This cross-sectional questionnaire study included 124 families with a mentally ill parent and 127 families without a mentally ill parent who at the time of the study had children aged 11–16 years old. Parents completed questionnaires about their mental health, parent–child interaction (i.e., parental monitoring and parental support), and family environment (i.e., cohesion, expressiveness, and conflict). Adolescents reported their internalizing and externalizing problems. Path analyses were used to examine the direct associations between parental mental illness and adolescent problems as well as the indirect relations via parent–child interaction and family environment. The results showed that interaction between parents with a mental illness and their child was significantly worse compared to parents without a mental illness. The family environment of parents with mental illness was also more negative. Mentally ill parents monitored their adolescents less, which in turn related to more externalizing problems of the adolescents. No factors mediated the relation between parental mental health and adolescent internalizing problems. Moreover, no direct effects of parental support, family cohesion, and family expressiveness with externalizing problems were found. These findings imply that parental monitoring should get a specific focus of attention in existing interventions designed to prevent adolescents with a mentally ill parent from developing problems.     

The Role of Maternal Illness Perceptions in Family Functioning in Adolescent Girls with Anorexia Nervosa

Family based treatment of anorexia nervosa (AN) requires heavy parental involvement. To be effective, parents must possess a coherent understanding of the illness and believe that it is treatable. Yet we know little of how parents view the illness, nor whether these views are unique to AN. We examined illness perceptions in AN, how they compare to those of individuals with a serious medical illness, and how they relate to adjustment and coping. Twenty-five girls with AN, 24 girls with Type I diabetes, and their mothers completed measures of family functioning and psychological symptoms. Mothers also completed a measure of illness perceptions. Mothers viewed AN as less chronic, understandable, and controllable than mothers of girls with diabetes viewed their daughter’s respective illness. Such negative cognitions were associated with poor family functioning and maternal and adolescent adjustment. These findings have implications for enhancing family based treatments, as well as for modifying public health messages to reduce the pervasive stigma that influences such unhelpful perceptions about the illness.     

Soup,Stitches, and Song

Abstract

This article discusses ways that clinical practitioners can utilize creative strategies in working with clients who are experiencing grief following the death of their adolescent child. It presents a brief literature review regarding this specific type of parental grief as well as practical and helpful ways to utilize books, songs, and tangible projects in the grieving process.     

The emotional adjustment of children with Tourette's syndrome

We investigated the predictive value of family reaction and illness severity with respect to the emotional adjustment of Tourette's syndrome patients. The subjects included 30 children with Tourette's syndrome and 30 control subjects matched on age, sex, race, and socioeconomic status. The predictor variables included the child's perception of parental behavior, family adaptability as perceived by the mother, mother's self-concept, and illness severity. The results indicated that the children's perceptions of their parents' behavior explained the most variance in children's self-concepts and anxiety for both groups. These findings highlight the importance of the parent-child interaction in predicting the child's emotional adjustment to Tourette's syndrome.     

Drawing as a means of communication at the initial interview with children with cancer

Cancer is always associated with distress and fear. In working with children who have cancer, a trusting relationship and meaningful dialogue often cannot be established by talking on its own. Drawings may offer an opportunity for children to express their feelings without giving up resistance completely. This paper summarizes the aims of the first interview with an ill child, one of its main purposes being the evaluation of the children's and their family's resources to cope with the strains of the illness. The meaning of drawings in this process is discussed in two case reports.     

Understanding community re-entry of former prisoners with mental illness: a conceptual model to guide new research

Criminal justice, mental health, and social service professionals face a myriad of role expectations in working with prisoners with mental illness to facilitate community re-entry. These expectations include those related to law enforcement, social welfare, and administrative efficiency. The challenge for front line workers and the multiple systems that employ them is to integrate all these expectations effectively on behalf of the individual as well as the community. Current models of re-entry for individuals leaving prison with mental illness focus on the management and interaction of service systems. This paper presents a model of prisoner re-entry that incorporates a larger social context, illustrating dynamics related to both individuals with mental illness leaving prison and their interaction with the community setting. This model was generated through an interdisciplinary team effort. It was refined through a focus group process that included advocates, community members and other informants from mental health and criminal justice systems in five states. The model is designed to generate new questions for research that address both individual and community level issues.