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Biomedical subjects

Betty Davies

Publications and source records attributed to Betty Davies.

17 recordsLinked to original sources

Sibling bereavement and continuing bonds.

Historically, from a Freudian and medical model perspective, emotional disengagement from the deceased was seen as essential to the successful adaptation of bereavement. A major shift in the bereavement literature has occurred and it is now generally accepted that despite the permanence of physical separation, the bereaved remains involved and connected to the deceased and can be emotionally sustained through continuing bonds. The majority of literature has focused on adults and on the nature of continuing bonds following the death of a spouse. In this article, the authors demonstrate how the continuing bonds concept applies to the sibling relationship. We describe the unique continued relationship formed by bereaved children and adolescents following a sibling loss, highlight the factors that influence the siblings continuing bonds expressions, and offer clinical interventions. In our view, mental health professionals can play an important role in helping parents encourage activities that may facilitate the creation and maintenance of continuing bonds in their children.

Adaptation, Psychological↗

Mindfulness in hospice care: practicing meditation-in-action.

In this interpretive study, the authors explore the experience of mindfulness among hospice caregivers who regularly practice mindfulness meditation at a Zen hospice. They explore meditative awareness constituted within themes of meditation-in-action, abiding in liminal spaces, seeing differently, and resting in groundlessness. By opening into nonconceptual, paradoxical, and uncertain dimensions of experience, hospice caregivers cultivate internal and external environments in which direct experience is increasingly held without judgment. This inquiry points to in-between spaces of human experience wherein mindfulness fosters openness and supports letting go, and creating spaces for whatever is happening in attending the living-and-dying process.

Attitude to Death↗

Variations in and factors influencing family members' decisions for palliative home care.

The purpose of this paper is to describe the variations in and factors influencing family members' decisions to provide home-based palliative care. Findings were part of a larger ethnographic study examining the social context of home-based palliative caregiving. Data from participant observations and in-depth interviews with family members (n=13) providing care to a palliative patient at home, interviews with bereaved family members (n=47) and interviews with health care providers (n=25) were subjected to constant comparative analysis. Findings indicate decisions were characterized by three types. Some caregivers made uninformed decisions, giving little consideration to the implications of their decisions. Others made indifferent decisions, whereby they reluctantly agreed to provide care at home, and still others negotiated decisions for home care with the dying person. Decisions were influenced by three factors: fulfilling a promise to the patient to be cared for at home, desiring to maintain a 'normal family life' and having previous negative encounters with institutional care. Findings suggest interventions are needed to better prepare caregivers for their role, enhance caregivers' choice in the decision-making process, improve care for the dying in hospital, and consider the development of alternate options for care.

Adult↗

End-of-life care in a children's hospice program.

A project was completed in 1999 to evaluate the Canuck Place children's hospice program. This article reports only on the end-of-life care component. Results are provided from mail-out surveys with families who required end-of-life care and are supplemented by qualitative data which were collected from interviews with individuals prior to the survey. Eighteen families completed face-to-face interviews and another 70 families completed the mail-out questionnaire developed from the initial interviews. A total of 39 parents responded to the survey section about end-of-life care services. Results indicated that parents were reasonably comfortable discussing death with staff; they generally felt well prepared for their child's death because of the staff; the death of another child had a significant effect on families; parents' wishes at the time of their child's death were very supported by staff; and families were well supported by staff at the time of a child's death. Implications for practice and suggestions for future research are discussed.

Analysis of Variance↗

Children's perspectives of a pediatric hospice program.

Little attention has been paid to documenting the experiences of children in pediatric palliative care programs, both those who are ill and their siblings. In this evaluation study of Canuck Place, a Canadian, free-standing hospice program, 26 ill children and 41 of their siblings completed mail-out questionnaires. In addition, four ill children and 10 siblings participated in face-to-face interviews. Results indicate that nearly all children were enthusiastic about the program's activities and the physical environment at Canuck Place. Engaging activities, physical amenities, and the social climate promoted by staff, volunteers, and other families were important contributors to the children's satisfaction. Suggestions for better serving adolescents included: a wider range of age-appropriate activities, games, and toys--especially for teens and older children; more trips and tours outside the building and around town; and caring staff and volunteers who are "attentive-in-the-moment". From the children's perspective, the key to Canuck Place's success is its social climate of caring, safety, friendliness, acceptance, and variety.

Adolescent↗

"Living in the dragon's shadow" fathers' experiences of a child's life-limiting illness.

Grounded theory methods were used to study the experiences of 8 bereaved fathers whose children received care in a home-based hospice program. In-depth, unstructured interviews were audiotaped, transcribed, and coded for themes and categories. Every aspect of fathers' lives was affected by their experiences, which were described in metaphoric terms as living in a dragon's shadow. Fathers dealt with life in the dragon's shadow by battling the dragon (the illness)--the core social process. Battling was a conscious, active, continuous process that required strength, willpower, and work. Battling occurred within the context of fathers' experiences with fathering and fatherhood and was characterized by 3 aspects: battling with uncertainty, battling with responsibility, and battling with everyday disruption. Fathers were assisted by supportive work environments and by supportive relationships with health care providers. Unsatisfactory relationships with medical personnel compounded fathers' battling with life in the dragon's shadow.

Adaptation, Psychological↗

The impact on families of respite care in a children's hospice program.

With increasing trends towards home care of children with even the most complex conditions and care requirements, respite becomes critical in improving the quality of life for terminally ill children and their families. This article reports on the respite component of an evaluation project that examined the effect of the Canuck Place children's hospice program on the families it served during its first 30 months of operation. Canuck Place, located in Vancouver, British Columbia, Canada, is the first free-standing children's hospice in North America. Findings are derived from mail-out surveys to 144 families, face-to-face interviews with 18 families, and separate questionnaires specifically directed to parents who had used Canuck Place respite services. Sixty-five parents responded to the respite questions. They cited a wide range of benefits to the ill child, the child's siblings, and to the parents themselves; they also offered a few cautions. Our discussion focuses on three "lessons learned" from this unique investigation of respite within pediatric hospice care.

Activities of Daily Living↗

The impact on families of a children's hospice program.

Pediatric hospice is a relatively new development in the field of hospice care. This article reports on an evaluation project that examined the effect of the Canuck Place children's hospice program on the families it served during its first two and a half years of operation. Using the principles of participatory action research, data were collected from individual interviews, focus groups, and mail-out surveys of families who used the program. Sixteen categories of hospice program effect were found to summarize how families regarded, used, and assessed their experiences. Families overwhelmingly endorsed the Canuck Place program. They also provided helpful suggestions for improvement and growth, particularly during the program's formative years. Recommendations are made with a view to promoting and solidifying the ongoing success of the Canuck Place program, as well as of children's hospice programs in general.

Adolescent↗

Addressing spirituality in pediatric hospice and palliative care.

Hospice and palliative care principles mandate clinicIans to provide "total" care to patients and their families. Such care incorporates not only physical, emotional, and psychosocial care, but spiritual care as well. Even though considerable attention has been directed to spiritual issues for adult patients in hospice and palliative care, spirituality in pediatric palliative care has been virtually neglected. The need for guidelines to assess spirituality in this population was identified as a priority issue by members of a subcommittee of the Children's International Project on Children's Palliative/Hospice Services, created under the auspices of the National Hospice Organization. Committee members, based on their clinical, research, and personal experiences, identified several aspects relevant to spirituality in general, and to spirituality in pediatric palliative care in particular, and developed guidelines for clinicians in pediatric palliative care. The purpose of this paper is to share the results of this committee's work and, in particular, to present their guidelines for addressing spiritual issues in children and families in pediatric hospice and palliative care.

Adult↗

A typology of fatigue in children with cancer.

Fatigue in adults with cancer has received considerable attention as a troublesome symptom that requires nursing intervention. Fatigue in children with cancer, however, has received considerably less focus. The first phase of the present study used qualitative methods to generate a detailed description of fatigue in children with cancer. Thirteen children (ages 5 to 15) and 12 parents from the oncology service in two regional children's hospitals participated in the initial interviews; a validation sample comprised another 7 children and 6 parents from a third site. Transcribed interviews were subjected to grounded theory analysis. Energy, as an overriding phenomenon, was a core concept in the descriptions of fatigue. Findings suggest that children with cancer may experience three subjectively distinct types of fatigue that represent different levels of energy: typical tiredness, treatment fatigue, and shutdown fatigue. Children managed their dwindling energy and minimized further energy loss through strategies of replenishing, conserving, and preserving. Children's use of these strategies was influenced by temperament, lifestyle, environmental factors, and treatment modalities. Knowledge of the specific types of fatigue in children can offer direction for optimal intervention and for further research.

Adaptation, Psychological↗

End of life in pediatric oncology: how clinical practice leads to research.

In pediatric oncology nursing, and across practice disciplines in general, clinical research serves as the cornerstone for improving patient care. Historically, advances made in the care and cure of childhood cancer have stemmed directly from clinical research. The developments of new research questions are varied in their origin--some questions are based on previous work that leads logically to the next question, some are based on a clinical problem that requires more immediate attention, and then there are those that arise from an individual clinical experience. This last category provides clinicians with a poignant reason to search for answers on how to provide the most optimal care for all future patients. As the number of advanced practice nurses in pediatric oncology increases, there is the likelihood of an increased pursuit of clinical research. This article describes how one clinician's experience with dying children resulted in the pursuit of answers to clinical research questions. By reflecting on clinical practice and incorporating our practice in the development of research questions, we can improve the quality of care provided to all children with cancer.

Biomedical Research↗