OBJECTIVES:
22q11.2 deletion syndrome (22q11DS), a complex genetic syndrome associated with more than 180 features, presents complex challenges for parents including gaining a diagnosis. This phenomenological study sought the "lived" interpretations…
BACKGROUND: There is growing awareness that different terminal diseases translate into different family caregiver experiences, and the palliative and supportive care needs of these families are both similar and unique. Family members caring for…
The present paper describes a cross-sectional study of the psychosocial adjustment of 143 children with severe disability and their families identified from a regional case register for children with special needs. Thirty-eight per cent of the…
Patients and families increasingly use mobile apps as a relaxation and distraction intervention for children with complex, chronic medical conditions in the waiting room setting or during inpatient hospitalizations; and yet, there is limited data on…
Numerous studies demonstrate links between chronic stress and indices of poor health, including risk factors for cardiovascular disease and poorer immune function. Nevertheless, the exact mechanisms of how stress gets "under the skin" remain elusive.…
OBJECTIVES: To identify the prevalence of screening criteria for acute and posttraumatic stress disorders (PTSDs) and stress symptoms among family members of children in the PICU for more than 8 days and examine risk factors for stress symptoms.…
This study, based on grounded theory, explores the adaptational process of parents of pediatric oncology patients. Thirty-two Taiwanese parents (26 mothers and 6 fathers) were interviewed. Data were collected through individual in-depth and focus…
BACKGROUND: Current conceptualisations of moral distress largely portray a negative phenomenon that leads to burnout, reduced job satisfaction and poor patient care. OBJECTIVE: To explore clinical experiences, perspectives and perceptions of moral…
Background: Providing long-term care for a family member can be a source of severe stress for the untrained caregiver, and is known to cause depression, poor overall health, and lower quality of life for the caregiver. This burden may lead to poorer…
BACKGROUND: Some consider the loss of a child as the most stressful life event. When the death is caused by a malignancy, the parents are commonly exposed not only to their own loss, but also to the protracted physical and emotional suffering of the…
This qualitative study explored bereaved parents’ and siblings’ reports of legacies created by children with advanced cancer. Participants included 40 families of children who died from cancer, with 36 mothers, 27 fathers, and 40 siblings (ages 8-18…
BACKGROUND: Children's palliative care is a rapidly developing specialism internationally. Bereavement support is an integral component of children's palliative care but to date little research has investigated the bereavement support that mothers in…
The opiate-like peptide beta-endorphin and adrenocorticotropin are concomitantly secreted in increased amounts by the adenohypophysis in response to acute stress or long-term adrenalectomy as well as in vitro in response to purified corticotropin…
Background: The opioid peptide beta-endorphin (beta-E) is synthesized and released in response to stressful stimuli as well as acute alcohol administration. The release of beta-E following exposure to an inescapable aversive situation may mediate…
OBJECTIVE: To evaluate the psychosocial functioning of fathers as primary caregivers of pediatric oncology patients. METHODS: Fathers who identified themselves as the primary medical caregivers were given a packet of questionnaires, including the…
Understanding the malleable determinants of cellular aging is critical to understanding human longevity. Telomeres may provide a pathway for exploring this question. Telomeres are the protective caps at the ends of chromosomes. The length of…
BACKGROUND: It has been debated whether psychological stress causes cancer, but the scientific evidence remains contradictory. The objective of this study was to investigate whether the death of a child is related to cancer risk in bereaved parents.…
Feeding difficulties are common in neurologically impaired children, often leading to great distress and frustration in the child and family. A gastrostomy may be advocated if oral intake is inadequate causing poor weight gain or when there is…
BACKGROUND: Parental care for a child with a developmental disability is an enormous responsibility, one that can far exceed that of typical parental care. While most parents adapt well to the situation of caring for a child with a disability, some…
Caregiving stress has been associated with considerable demands imposed on parents responsible for the physical and emotional care of medically fragile children. With health care advances in medicine and technology, there are a growing number of…
In a longitudinal study, the causal links between different types of stressors, coping styles and adolescent symptomatology were investigated. A total of 94 adolescents and their mothers participated in three annual assessments of critical life…
This longitudinal study examined the relation between life stress and basic beliefs about self-worth and the benevolence and meaningfulness of the world among mothers of children undergoing bone marrow transplantation (BMT). One hundred mothers…
OBJECTIVE--To determine the frequency of symptoms of hunger and thirst in a group of terminally ill patients and determine whether these symptoms could be palliated without forced feeding, forced hydration, or parenteral alimentation.…
BACKGROUND: Children undergoing stem cell transplant (SCT) experience high levels of somatic distress and mood disturbance. This trial evaluated the efficacy of complementary therapies (massage, humor therapy, relaxation/imagery) for reducing…
BACKGROUND: Intensivists must provide enough analgesia and sedation to ensure dying patients receive good palliative care. However, if it is perceived that too much is given, they risk prosecution for committing euthanasia. The goal of this study is…
OBJECTIVE: To examine how individual- and family-level predictors in late childhood and preadolescence relate to psychosocial adaptation (i.e., scholastic success, social acceptance, and positive self-worth) in early adolescence. METHOD: This…
Researchers studying stress and coping processes have attempted to identify which coping strategies are most adaptive in stressful encounters. A generally accepted conclusion has been that emotion-focused coping processes are associated with…
Many models of pain give coping an important role in understanding adaptation to chronic pain. Among these, Lazarus and Folkman's cognitive-phenomenological model of stress and coping provides a theoretical framework to conceptualise stress phenomena…
The aim of this study was to investigate how parents cope with and care for a child with Dravet syndrome, a severe myoclonic epilepsy with three distinct stages. Twenty-four parents of children with Dravet syndrome participated in a semi-structured…
Seventy-one couples living in a stepfamily context reported interpersonal family stressors and related coping strategies daily for 1 week in a daily process study. The role of personality and of the stressful context in each of the spouse's coping…
Stress is known to either up or down regulate immunity. In this study, mice were subjected to handling combined with rectal temperature measurement (RTM) stress or handling only stress. We investigated whether there were any significant differences…
OBJECTIVE: The growing shift toward home care services assumes that "being home is good" and that this is the most desirable option. Although ethical issues in medical decision-making have been examined in numerous contexts, home care decisions for…
Rationale: The decision of whether to initiate or forgo long-term ventilation (LTV) for children with life-limiting conditions can be complex and impactful. Providers are responsible for helping families to understand the consequences of their…
BACKGROUND: There is a lack of studies examining the prevalence and severity of psychosocial distress in parents caring for a child with life-limiting condition. More research is also needed to better understand the experience, support needs and…
The work of perinatal nurses sometimes includes emergencies involving death, or near death, which can leave health care providers with feelings of stress and grief. After experiencing a particularly stressful period, nurses at our organization…
The alleviation of suffering is crucial in all of medicine, especially in the care of the dying. Suffering cannot be treated unless it is recognized and diagnosed. Suffering involves some symptom or process that threatens the patient because of fear,…
