Danai Papadatou

Paediatric palliative care: challenges and emerging ideas

Paediatric palliative care is an emerging subspecialty that focuses on achieving the best possible quality of life for children with life-threatening conditions and their families. To achieve this goal, the individuals working in this field need to: clearly define the population served; better understand the needs of children with life-threatening conditions and their families; develop an approach that will be appropriate across different communities; provide care that responds adequately to suffering; advance strategies that support caregivers and health-care providers; and promote needed change by cultivating educational programmes. Despite these challenges, advances in paediatric palliative care have been achieved in a short period of time; we expect far greater progress as the field becomes more formalised and research networks are established.

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.

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.

Suffer the Children An Examination of Psychosocial Issues in Children and Adolescents with Terminal Illness

Although deaths in childhood and adolescence have decreased greatly across the past century, they remain a reality and a challenge. This article points out specific problems in caring for dying children, including the amount of concern that must be given to age and developmental levels as well as to family and school issues. A brief review of the literature regarding causes of death, childrens understanding of death, how children cope with terminal illness, choices and decisions that families must make, and pediatric palliative care services is included. Cultural and legal issues are also addressed.

Psychosocial functioning of young adolescent and adult survivors of childhood cancer

Goals of workThe present study aimed to assess the psychosocial well-being of Greek adolescent and young adult survivors of childhood cancer and, in particular, self-esteem, anxiety, coping strategies, and social functioning.Patients and methodsThe sample comprised 103 Greek childhood cancer survivors and 135 healthy controls. The Battle Culture-free Self-esteem Inventory (BCSEI), the Spielberger State–Trait Anxiety Inventory (STAI), the Lazarus and Folkman Ways of Coping, and 36-item short-form instruments were used along with The Questionnaire for the Quality of Life.Main resultsSurvivors scored higher than controls on all STAI subscales, but on State, the difference was statistically significant only for female adults, while on the Trait subscale, for the entire group. Survivors scored lower on Personal and higher on Lie subscale of BCSEI, by comparison to controls. When coping with stressful events, the use of self-blame strategies and wishful thinking were more frequent among controls, while distancing strategies more common among survivors.ConclusionsThe long-term psychological functioning of Greek survivors of childhood cancer is satisfactory, with emotional difficulties, such as increased anxiety and lower self-esteem, receding over time. Survivors experience personal growth and mature through trauma as they develop a positive view of the impact that the cancer experience has upon their life.

Parental grief following the brain death of a child : Does consent or refusal to organ donation affect their grief?

The purpose of this study was to investigate the grieving process of parents who were faced with the dilemma of donating organs and tissues of their underage brain dead child, and to explore the impact of their decision on their grief process. A grounded theory methodology was adopted and a semi-structured interview was conducted with 11 bereaved parents who consented to, and 11 parents who declined organ donation. Findings suggest that the core themes that characterize their grief and the main variables that affect their grieving process are similar for both donor and non-donor parents. Consent or refusal of organ donation per se does not seem to affect the overall grieving process. It is the meaning attributed to the act of donation that affects how parents perceive the childs death and subsequently facilitate or hinder their adjustment to loss.

Moral Professional Personhood: ethical reflections during initial clinical encounters in nursing education

Moral agency is an important constituent of the nursing role. We explored issues of ethical development in Greek nursing students during clinical practice at the beginning of their studies. Specifically, we aimed to explore students’ lived experience of ethics, and their perceptions and understanding of encountered ethical conflicts through phenomenological analysis of written narratives. The process of developing an awareness of personal values through empathizing with patients was identified as the core theme of the students’ experience. Six more common themes were identified. Development of the students’ moral awareness was conceptualized as a set of stages, commencing with empathizing with patients and nurses, moving on to taking a moral stand and, finally, concluding by becoming aware of their personal values and showing evidence of an emerging professional moral personhood. The notions of empathy, caring and emotion were in evidence throughout the students’ experience. Implications for practice and nurse education are discussed.

Accelerometer feedback to promote physical activity in adults with type 2 diabetes: a pilot study.

This study examined whether giving activity feedback to obese, sedentary adults with Type 2 diabetes would improve their adherence to a home-based walking program. 49 subjects were recruited. Ten failed a treadmill cardiovascular test. Another 9 dropped out before the intervention, and 4 dropped out during the intervention. The remaining 26 adults (14 women, 12 men; age M = 48.1 yr., SD = 7.1) received behavioral counseling monthly for 3 mo. regarding exercise. All subjects wore a triaxial accelerometer during these 3 months. Randomly, half of the subjects were blind to the data from the accelerometers, i.e., no feedback, and had counseling based on their self-report diaries. The other half had access to the accelerometer data, got a computerized graph of their physical activity for the period between counseling sessions, and had counseling based on these objective data, i.e., feedback. The feedback group showed an increase in exercise over the 3 mo. The nonfeedback group showed an increase in activity at 1.5 mo. but reverted to their baseline exercise levels at 3 mo. However, analysis of variance showed there was at least an 8% probability that this effect was due to chance, so the hypothesis that feedback would improve exercise adherence could not be supported. Further studies with larger sample sizes and greater control of experimental conditions are needed to determine the utility of objective activity feedback.

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 childs 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.

Adolescents' reactions after a wildfire disaster in Greece

This cross-sectional study examined the factors associated with higher levels of posttraumatic stress disorder (PTSD) and depression symptoms in 1,468 adolescents, 6 months after a wildfire. The rate of probable PTSD was 29.4% and 20% for probable depression. Findings on predisaster, disaster-related, and postdisaster factors revealed that disaster-related factors-specifically objective and perceived threat to self and others-were associated with symptoms of PTSD but not depression. Predisaster life events, postdisaster losses, and escape-oriented coping strategies were associated with higher levels of both PTSD and depression symptoms, while control-oriented coping and perceived social support were differentially associated with symptoms of and depression. Findings have implications for the assessment and treatment of traumatized and depressed adolescents after a disaster.