Caring for an intimate stranger: parenting a child with psychosis.

WHAT IS KNOWN ON THE SUBJECT: The care of an adult son or daughter with psychosis is filled with overwhelming demands caused by the symptomatology and illness exacerbations. Parents display disenfranchised grief over multiple losses and report increased levels of emotional burden. Most studies use quantitative methods and rely on pre-existing theoretical frameworks to investigate, through psychometric measures, the effects of being a carer. Meaning attributions to the disorder, and changes in parent-child relations over time, are poorly understood. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE: This hermeneutic phenomenological study illuminates the subjective experience of parenting a son or daughter with psychosis, as it is lived and described by parents of young adults with psychosis. Findings suggest that the parents' perceptions of their child changes over the course of the disorder, leading to a redefinition of the parent-child relationship, causing alternations in attachment. Findings illuminate the parents' profound guilt over having contributed or not prevented the disorder, over not being 'good' parents and feeling ambivalent towards an 'intimate stranger.' Guilt is compensated by absolute dedication to the son or daughter's care, at the expense of their own well-being. WHAT ARE THE IMPLICATIONS FOR PRACTICE: Interventions for parents must be available as soon as possible, both during hospitalization and after discharge. Professionals should provide a therapeutic space, where parents could express intimate thoughts and feelings, address guilt, fear and resentment issues, be assisted in their parenting role as well as in the reconstruction of a sense of self and self-esteem. Professionals are invited to facilitate illness acceptance, provide accurate information, assist parents to redefine their relationship to the child and facilitate the integration of the traumatic experience into their personal and family narrative. Professionals must develop in depth awareness of their biases and attitudes, have an ongoing training on how to respond to the parents' needs, facilitate therapeutic change and accompany families through the course of their adult child's illness trajectory. ABSTRACT: Introduction Children who are diagnosed with psychosis often rely on their parents for prolonged care. The impact of such care is partially understood as most studies use quantitative methods and pre-existing theoretical frameworks that limit their investigation to emotional burden, and emotional responses. Aim Explore the parents' lived experience of caring for a child with psychosis. Method A hermeneutic phenomenological design was used with a sample of 16 parents of children with psychotic disorders who were hospitalized or attended the outpatient clinic of a large psychiatric Greek hospital. Results Identified themes were as follows: (i) the psychosis experience, (ii) redefinition of the parent-child relationship over the course of the disorder and (iii) challenges of parenting a child with psychosis. Discussion 'Caring for an intimate stranger' reflects the parents' overall experience, involving changes in the parent-child relationship, ambivalence towards caretaking and profound guilt, compensated by self-sacrifice parenting practices. IMPLICATIONS FOR PRACTICE: Findings highlight the necessity to train mental health professionals to provide individualized information; facilitate family communication; address the parents' guilt, ambivalence, meaning attributions that compromise adjustment; and support them through the challenges of parenting a son or daughter with psychosis.

Changes in children's fatigue during the course of treatment for paediatric cancer.

BACKGROUND: Fatigue is described as one of the most distressing symptoms of cancer therapy; yet it has received limited clinical attention. Children are suffering from a symptom that is under-diagnosed during their treatment. AIM: The aim of this study is: (a) to assess the change in fatigue scores during cancer treatment according to children's perspectives, and (b) to describe the possible causes of fatigue from children's points of view. SAMPLE AND METHODS: The present study is part of an ongoing prospective study. The research group consisted of 40 (n = 40) children aged 7-12 years with cancer who are being followed up in the oncology clinic of a Greek children's hospital. After parental consent was obtained, data were collected using the Child Fatigue Scale and a sociodemographic data form. RESULTS: The children with cancer reported a statistically significant increase in fatigue scores during their treatment (F = 6.846, P = 0.003). Gender was the only demographic factor associated with a significant increase in the fatigue scores (F = 4.857, P = 0.034). CONCLUSIONS: Cancer treatment was found significantly to increase children's fatigue levels. Medical procedures and the hospital environment seemed to be major causative factors of the fatigue experienced by children with cancer during their treatment.

Empirically based recommendations to support parents facing the dilemma of paediatric cadaver organ donation.

The aim of the study was to describe the challenges donor and non-donor parents encounter before, during, and after the organ donation decision, and to identify parents' needs and expectations from health care professionals. A further aim was to propose evidence-based recommendations for effectively introducing the option of donation, and supporting families through the grieving process. This study was undertaken as part of a larger research project investigating the experiences of Greek parents who consented or declined organ and tissue donation, using a qualitative methodology for data collection and analysis. The experiences of 22 Greek bereaved parents of 14 underage brain dead children were studied through semi-structured interviews. Parents' decision-making process was described as challenging and fraught with difficulties both before and after the donation period. Identified challenges were clustered into: (a) personal challenges, (b) conditions of organ request, and (c) interpersonal challenges. Parents' main concern following donation was the lack of information about transplantation outcomes. Findings led to a list of recommendations for nurses and other health professionals for approaching and supporting parents in making choices about paediatric organ donation that are appropriate to them, and for facilitating their adjustment to the sudden death of their underage child.

Caring for dying children: a comparative study of nurses' experiences in Greece and Hong Kong.

The purpose of this transcultural descriptive study was to explore the subjective experiences of 63 oncology and critical care nurses who provide care to dying children in Greece and Hong Kong. Semistructured interviews were conducted with 39 Greek and 24 Chinese nurses who described their experiences and responses to the dying process and death of children. The data were analyzed qualitatively and quantitatively, and nurses' responses were compared for their work setting (oncology versus critical care) and their ethnic background (Greek versus Chinese). Findings revealed that most nurses experience a sense of helplessness when caring for a dying patient and difficulties in their communication with the child and parents during the terminal phase of the disease. The large majority acknowledge that the impending or actual death of a patient elicits a grieving process, which is characterized by a fluctuation between experiencing and avoiding loss and grief. Greek and Chinese nurses differ in their expression of their grief and how they attribute meaning to childhood death. Despite the suffering caused by multiple deaths, nurses report significant rewards from caring for chronically and acutely ill children, and the majority are satisfied with their job, despite the difficulties they encounter, in both countries, mostly as a result of shortage in personnel and cooperation problems with physicians.

Job-related stress among nursing personnel in Greek dialysis units.

The purpose of this study was to describe specific work-related factors that contribute to increased levels of stress experienced by nursing personnel, and to compare their impact on nurses and assistant nurses who work in Dialysis Units (DU) to those who work in Peritoneal Dialysis Units (PDU) in Greece. The sample of the study consisted of 682 members of nursing personnel working in DU and in PDU in Greek Hospitals. The collection of data was done by means of a questionnaire. The latter included questions about the motivation of nursing personnel for having chosen to work in these units along with questions about the stress factors related to the patients and their care, the role of the nurse in the unit, and the working conditions. According to the results of the study, the percentage of nursing personnel working in DU or PDU by their own choice was 71% and 8.3% respectively, whereas the rest of the staff were placed there irrespective of their preferences, by the Administrators. Among nursing personnel who had chosen to work in DU, the reported motives that contributed to their decision were the absence of a night shift (27.8%), and working in a closed unit. The main motive that incited nursing personnel to work in PDU was the acquisition and the application of specialized knowledge. The percentage of nursing personnel working in DU that expected high levels of job satisfaction was 77%, whereas the corresponding percentage for nursing personnel working in PDU was 65%. However, only 44% and 37% of the nursing personnel working in DU and PDU reported high levels of job satisfaction. The most important stressors related: i) To the patient: were the risk of contamination (79% DU, 84% PDU) and the death of a patient (77% DU, 80% PDU). 2) To the role of nursing personnel in the unit: were increased responsibilities (65% DU, 37% PDU), low involvement of the nursing personnel in decision making (58% DU, 54% PDU), and low professional status of nursing personnel. 3) To the working conditions: were the shortage of nursing personnel (74% DU, 99% PDU), limited material (74% DU, 57% PDU), the closed environment (75% DU, 64% PDU) and the daily work routine (78% DU, 61% PDU). In conclusion, we can say that working in DU and PDU provokes increased stress in nursing personnel, even though the implicated stress factors differ between these units.

Experiences of mothers in five countries whose child died of cancer.

Although increasing attention is being focused on the emotional aspects of caring for dying children and their families, few research reports concentrate on the experiences of mothers, particularly in different countries. This article describes the findings of an exploratory, descriptive study that investigated the experiences of mothers from five different countries who each had a child die from cancer in the past 6 months. Principal investigators, members of the International Work Group on Death, Dying, and Bereavement, conducted semistructured interviews with 21 mothers in their own countries. No culturally related differences were noted among mothers, and the mothers' recall of their experiences are more similar than different. All mothers, irrespective of country, described similar reactions to the diagnosis, management of the end-stage illness, and challenge of coping with bereavement. Lessons learned from this project provide suggestions for future research across countries.

Training health professionals in caring for dying children and grieving families.

In most industrialized countries today, the death of a child is a rare phenomenon. When it occurs, however, it is usually within a hospital setting, after the child has received complex and often long-term medical care aimed at curing or controlling a serious disease. Thus, health professionals are increasingly exposed to the dying process and death of a child with little prior education to help them deal with the particular needs of young patients and minimal preparation in recognizing and handling their personal reactions in the face of death. Comprehensive training programs in pediatric hospice care could help professionals cope with the growing and unique needs of terminally ill children and of their families but these should be differentiated from training programs designed for the terminal care of adult patients. The purpose of this article is to describe and discuss some of the challenges involved in the training of health professionals (pediatricians, nurses, psychologists, social workers, clergy) who wish to provide services to dying children and grieving families. These challenges include (a) definition of educational objectives, (b) selection of teaching methods and content of training, (c) definition and teaching of emotional involvement, (d) support of training participants, (e) promotion of interdisciplinary collaboration, (f) evaluation of the training process and its outcomes, and (g) background and skills of educators. The challenges are discussed and references are made to illustrate how they were met by a 600-hour training program on home-based palliative care for children dying of cancer conducted at the University of Athens.

Death of a child at home or in hospital: experiences of Greek mothers.

The purpose of this study was to investigate the experiences of Greek mothers who cared for a child dying of cancer at home or in the hospital, and to highlight some of their major needs during the terminal period. Fifteen mothers were interviewed and both quantitative and qualitative procedures were used to analyze the findings. Ten families (67%) chose to care for the child at home without having access to home care services, while the remaining five sought hospital care. Their decision was primarily based upon the child's expressed wish and parental preference. The family network played a significant role in supporting the mother-child unit, especially when death occurred at home. Mothers assessed positively the services provided by nurses and social workers, and had expectations that physicians would support them on a psychological level during the terminal period. The care of the dying child is influenced by cultural factors predominant in Greek society and some of the findings are discussed in this light.

Factors contributing to the development of burnout in oncology nursing.

The purpose of this study was to determine whether oncology nurses experience higher levels of burnout compared to nurses working in general hospitals, and to further identify the personal and environmental factors that contribute to the development of emotional exhaustion, depersonalization and lack of personal accomplishment. Seven tools, measuring a selected set of demographic, psychological and occupational variables, were administered to 217 female nurses who worked in oncological hospitals and 226 nurses who worked in general hospitals in the area of Athens. Measures used in the study included the Maslach Burnout Inventory, the Hardiness Scale, the Ways of Coping Scale, the Life Style Scale, the Type A Behaviour Scale, a Job Stress Questionnaire and a General Information Questionnaire. No statistically significant difference was revealed in the degree of burnout experienced by nurses in oncology and those in general hospitals. Multiple linear regression analysis suggested that personality characteristics seem to predict a greater percentage of the variability of the burnout experienced than occupational and demographic variables. A sense of personal control over the things that happen in life and in the work environment was found to protect nurses from emotional exhaustion, depersonalization and lack of personal accomplishment.

Adolescents dying from cancer.

'Dying' and 'adolescence' are both transitional periods, characterized by change, loss, separation, along with a search for meaning and identity. It is therefore important for those involved in the care of dying adolescents to possess the necessary skills for understanding the reactions and needs of young people who attempt--through interaction with others--to give meaning to both their life and their approaching death. Effective intervention necessitates the ability to encourage open communication and to interpret the symbolic language that adolescents use to express their feelings, concerns and needs. Examples from clinical experience are presented and discussed in an attempt to enhance appropriate support during those critical moments. Dying is a social and dynamic process and through meaningful interaction and honest communication, it may become an enriching experience for both the adolescent and those involved in his/her care.