Betty Davies

Mourning and Meaning

Viewed in an expanded frame, the phenomena of grief and bereavement call for analysis in sociological, psychological, and psychiatric terms. In this article, the authors argue that a common theme in these accounts is that of the meaning of loss as expressed in both individual and collective attempts at adaptation. At a societal level, communal rituals, discursive practices, and local cultures provide resources for integrating the significance of loss for survivors and regulating the emotional chaos of bereavement. At an individual and interpersonal level, survivors struggle to assimilate the loss into their existing self-narratives, which are sometimes profoundly challenged by traumatic bereavement. Complicated grief can therefore be viewed as the inability to reconstruct a meaningful personal reality, an outcome to which individuals with insecure working models of self and relationships are especially vulnerable. Nonetheless, evidence suggests that grief can prompt personal growth as well as despair, augmenting rather than only reducing the survivors sense of meaning.

Barriers to Palliative Care for Children : Perceptions of Pediatric Health Care Providers

OBJECTIVE. The goal was to explore barriers to palliative care experienced by pediatric health care providers caring for seriously ill children. METHODS. This study explored pediatric provider perceptions of end-of-life care in an academic childrens hospital, with the goal of describing perceived barriers to end-of-life care for children and their families. The report focuses on the responses of nurses (n = 117) and physicians (n = 81). RESULTS. Approximately one half of the respondents reported 4 of 26 barriers listed in the study questionnaire as frequently or almost always occurring, that is, uncertain prognosis (55%), family not ready to acknowledge incurable condition (51%), language barriers (47%), and time constraints (47%). Approximately one third of respondents cited another 8 barriers frequently arising from problems with communication and from insufficient education in pain and palliative care. Fourteen barriers were perceived by >75% of staff members as occasionally or never interfering with pediatric end-of-life care. Comparisons between physicians and nurses and between ICU and non-ICU staff members revealed several significant differences between these groups. CONCLUSIONS. Perceived barriers to pediatric end-of-life care differed from those impeding adult end-of-life care. The most-commonly perceived factors that interfered with optimal pediatric end-of-life care involved uncertainties in prognosis and discrepancies in treatment goals between staff members and family members, followed by barriers to communication. Improved staff education in communication skills and palliative care for children may help overcome some of these obstacles, but pediatric providers must realize that uncertainty may be unavoidable and inherent in the care of seriously ill children. An uncertain prognosis should be a signal to initiate, rather than to delay, palliative care.

Clarification of advanced nursing practice: characteristics and competencies.

The concept of advanced nursing practice is still evolving even as the nursing profession evolves. Davies and Hughes’s article was one of the first to transcend the role understandings of clinical nurse specialists (CNSs) and nurse practitioners (NPs) to describe advanced nursing practice in terms of competencies. Their work was seminal to my own thinking about advanced nursing practice, resulting in the definition proposed in Advanced Nursing Practice: An Integrative Approach (Hamric AB, Spross JA, Hanson CM, eds. Advanced Nursing Practice: An Integrative Approach. Philadelphia: WB Saunders; 1996:42-56). This way of understanding advanced nursing practice as a constellation of competencies embedded in a variety of roles, rather than in terms of particular roles, has become the dominant way we define advanced nursing practice today. Davies and Hughes’s insight that “the term advanced nursing practice extends beyond roles” has helped to diffuse the intraprofessional rivalry between CNSs and NPs and the divisiveness it created within the profession, even as it has helped extend the understanding of advanced nursing practice in evolving roles. I think of published scholarship as an ongoing conversation, a series of one-way dialogues, if you will, that builds on previous conversations and lends new insights to our continued efforts to strengthen the nursing profession. It is one of the key reasons why we need to stay abreast of the literature, so we can be responsible contributors to the conversation. We all build our ideas from the insights of others even as we contribute our own insights to the dialogue. Davies and Hughes built upon my earlier conversations about the CNS role, and I in turn built upon their important insights about advanced nursing practice. Since that time, others have contributed to the development of our understanding, and my definition continues to evolve based on these contributions. And so it goes. Let the conversation continue! Ann B. Hamric, PhD, RN, FAAN Although the term advanced nursing practice has been used extensively to describe the practice of the CNS, it is difficult to find a clear definition of the term. The role has been articulated as a constellation of subroles: clinician, educator, researcher, and consultant. However, describing various subroles does not capture the broader picture of the CNS’s contribution to health care delivery. This has lead to discussions among faculty of one university regarding the need to clarify advanced nursing practice as the first step in redesigning the educational preparation for the CNS as an advanced nurse practitioner. In this article, an overview of advanced practice is provided, differences in practice levels are discussed, and characteristics and competencies inherent to advanced nursing practice are delineated. How these characteristics and competencies interact to present a picture of advanced nursing practice is illustrated in a case study.

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.

A Typology of Fatigue in Children With Cancer

Fatigue in adults with cancer has received considerable attention as a trouble some 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 childrens 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. Childrens use of these strategies was influenced by temperament, lifestyle, environmental factors, and treatment modalities. Knowl edge of the specific types of fatigue in children can offer direction for optimal intervention and for further research.

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.

Comparison of Continuing Bonds Reported by Parents and Siblings After a Child's Death from Cancer

Few studies have distinguished similarities and differences between continuing bonds as they appear in various bereaved populations, particularly parent versus sibling cohorts following a childs death. This mixed-method study compared how parents and siblings experienced continuing bonds in 40 families who lost a child to cancer. Thirty-six mothers, 24 fathers, and 39 siblings were recruited 3–12 months post-loss (M = 10.7, SD = 3.5). Nearly all participants (97%) reported engaging in purposeful bonds with deceased children, while only 14% reported nonpurposeful connections. Over half of participants (58%) experienced comforting effects from reminders of the deceased child, whereas only 10% of family members experienced discomforting effects. Mothers communicated with the deceased, thought about the deceased, and did things that the deceased child would have liked more often than siblings. Mothers also reported significantly more comforting effects than siblings. Additional research is needed to further delineate continuing bonds for different types of loss and examine associations with positive and negative outcomes for bereaved individuals.

Chemotherapy-Related Fatigue in Childhood Cancer: Correlates, Consequences, and Coping Strategies

The aim of this research is to examine the experience and impact of chemotherapy-related fatigue in recently diagnosed pediatric oncology patients. A repeated-measures, within-subjects, mixed (quantitative plus qualitative) design was used to prospectively assess fatigue during early chemotherapy cycles and to compare fatigue to depressive symptoms. Parental interviews collected concurrently were analyzed for descriptions of the childs fatigue and mood states and for strategies to cope with fatigue. Results indicated a significant correlation between fatigue and depression, but qualitative analyses suggested that the 2 phenomena may be unique and distinguishable. Qualitative analyses of parent interviews also identified specific strategies that were frequently used in response to high levels of fatigue. The findings illustrate the significant impact of chemotherapy-related fatigue in children being treated for cancer. The study also provides guidance for the assessment of fatigue and related symptoms and identifies specific strategies for coping with fatigue.

Bereaved parents' and siblings' reports of legacies created by children with cancer.

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 years). Individual interviews were completed at home approximately 10.68 months (SD = 3.48) after the child’s death. Content analysis of interviews indicated that many children living with cancer did specific things to be remembered, such as making crafts for others, willing away belongings, writing letters to loved ones, and giving special gifts. Some children, particularly those who were very ill or died unexpectedly, did not intentionally do or say anything to be remembered. Legacies included bereaved individuals remembering children’s qualities, concern for family, and beliefs about afterlife. Having advanced cancer appeared to motivate children to influence others’ lives and prepare for their own deaths. Children’s advice about how to live life inspired bereaved family members. Findings contribute to the current knowledge of legacy-making in children and offer implications for practice and future research.

Parental depression following the death of a child

Abstract Forty mothers and 26 fathers were examined for depression 2 and 7 years after the death of a child from cancer. There was no difference between parental depression at 2 and 7 years; however, 22% of the variance in parental depression at 7 years was accounted for by depression at 2 years. Both times, parental depression was unrelated to either the gender of the parents or the length of the childs illness. The findings suggest that parental depression following the death of a child from cancer does not change significantly between the second and seventh years postdeath in the natural course.