Children in palliative medicine: An overview
Davies B; Siden H
In Hanks G, Cherny NI, Christakis NA, Fallon M, Kaasa S & Portenoy RK (Eds.). Oxford Textbook of Palliative Medicine (4th edition). Oxford: Oxford University Press, 1301-17.
Oxford: Oxford University Press
2009
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Impact of End-of-Life Circumstances on the Adjustment of Bereaved Siblings of Children Who Died from Cancer
Children; Adjustment; End of life; Cancer; Sibling bereavement
The aim of this study was to examine the impact of end-of-life (EoL) circumstances on grief and internalizing symptoms among bereaved siblings. Bereaved families (N = 88) were recruited from three sites 3-12 months (M = 11.57, SD = 3.48) after their child's death from cancer. One sibling per family aged 8-17 years (M = 12.41, SD = 2.64) was randomly selected to participate. Families completed measures of siblings' grief and internalizing symptoms, as well as a structured interview about circumstances surrounding the death. Mother and sibling reports of EoL circumstances were generally concordant, except there was a discrepancy between mothers and children about whether or not children expected their sibling's death (t(75) = 1.52, p = .018). Mother reports of sibling internalizing symptoms were above the normative mean (t(83) = 4.44, p ≤ .001 (M = 56.01 ± 12.48), with 39% (n = 33) in the borderline/clinical range. Sibling opportunity to say goodbye was associated with greater grief-related growth (t(79) = - 1.95, p = .05). Presence at the death and wishing they had done something differently were both associated with greater grief (t(80) = - 2.08, p = .04 and t(80) = - 2.24, p = .028, respectively) and grief-related growth (t(80) = - 2.01, p = .048 and t(80) = - 2.31, p = .024, respectively). However, findings were primarily unique to sibling report, with few mother-reported effects. The adjustment of bereaved siblings may be affected by certain modifiable circumstances surrounding the death of their brother or sister. A proportion of bereaved siblings had elevated internalizing symptoms irrespective of circumstances at EoL. Further work is needed to understand predictors of adjustment among bereaved siblings to provide better support and optimize their outcomes.
Kenney AE; Tutelman PR; Fisher RS; Lipak KG; Barrera M; Gilmer MJ; Fairclough D; Akard TF; Compas BE; Davies B; Hogan NS; Vannatta K; Gerhardt CA
Journal of Clinical Psychology in Medical Settings
2021
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<a href="http://doi.org/10.1007/s10880-021-09797-x" target="_blank" rel="noreferrer noopener">10.1007/s10880-021-09797-x</a>
Facilitating day-to-day decision making in palliative care
Female; Humans; Male; Adult; Questionnaires; Aged; Middle Aged; Nurse-Patient Relations; 80 and over; Non-U.S. Gov't; Research Support; decision making; Palliative Care/psychology; Oncologic Nursing; Nursing Process
As part of a larger grounded theory study investigating the process by which palliative care patients make everyday choices, a secondary analysis of data was conducted to investigate the ways nurses support or restrict patients' participation in their care. Constant comparative methods were used to generate a detailed, contextually grounded description of nurses' strategies that influenced patients' participation in making everyday choices about their personal and nursing care. Data consisted of field notes derived from observations of patients and their caregivers in two hospital-based palliative care units and from 23 transcripts of interviews with participating nurses and patients. Nurses' efforts to support patients' participation in decision making were described as a four-phase process: getting to know the patient, enhancing opportunities for choice, being open to patient choice, and respecting choice. Factors influencing nurses' use of supportive behaviors and behaviors that restricted patients' participation in everyday choices were identified. Given the importance patients attributed to making choices, these findings provide a foundation for the design of nursing interventions that hold great potential for directly influencing quality of life.
2000
Bottorff JL; Steele R; Davies B; Porterfield P; Garossino C; Shaw M
Cancer Nursing
2000
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1097/00002820-200004000-00011" target="_blank" rel="noreferrer">10.1097/00002820-200004000-00011</a>
Mindfulness in hospice care: Practicing meditation in action
2005
Bruce A; Davies B
Qualitative Health Research
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/1049732305281657" target="_blank" rel="noreferrer">10.1177/1049732305281657</a>
Considerations for ethics in multisite research in paediatric palliative care
PPC Book Chapter 2011 (Kim Widger); Multi-site Ethics; NET CV
2009
Cadell S; Ho G; Jacques L; Wilson K; Davies B; Steele R
Palliative Medicine
2009
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Journal Article
<a href="http://doi.org/10.1177/0269216309103122" target="_blank" rel="noreferrer">10.1177/0269216309103122</a>
Away from home: Experiences of Mexican-American Families in Pediatric Palliative Care
2010
Contro N; Davies B; Larson JM; Sourkes B
Journal of Social Work in End-of-Life & Palliative Care
2010
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1080/15524256.2010.529020" target="_blank" rel="noreferrer">10.1080/15524256.2010.529020</a>
Family functioning: Impact on siblings.
Longitudinal Studies; Attitude to death -- In infancy & childhood; Bereavement -- in infancy & childhood; Bereavement in children; Brothers and sisters -- Death -- Psychological aspects; Children and death; Grief in children; Sibling Relations -- in infancy & childhood
Davies B
Shadows In The Sun: The Experiences Of Sibling Bereavement In Childhood.
1999
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Book/Book Section
After a child dies: Helping the siblings.
Child; Palliative Care; Terminal Care; Siblings; Longitudinal Studies
Davies B
Hospice Care For Children
1993
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Book/Book Section
Supporting families in palliative care.
Davies B
Ofxord Textbook Of Palliative Care Nursing
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Book/Book Section
The grief of siblings
Grief; Siblings
Davies B
Helping Bereaved Children : A Handbook For Practitioners
2002
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Book/Book Section
Pediatric Palliative Care
Davies B
Encyclopedia Of Death And The Human Experience
2009
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Book/Book Section
Sibling bereavement: research-based guidelines for nurses. [Review] [27 refs]
IM; sibling bereavement; N
Despite the marked improvement in the treatment of childhood cancer in recent decades, there are children who die, leaving behind a legacy of grief for all who knew them, including their siblings. Nurses can play a significant role in facilitating healthy grieving for these surviving children. The results of several studies pertaining to sibling bereavement after the death of a child from cancer provide guidelines for clinicians. [References: 27]
1993-05
Davies B
Seminars In Oncology Nursing
1993
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Journal Article
Long-Term Outcomes of Adolescent Sibling Bereavement
bereavement; sibling bereavement
The experience of sibling bereavement is relatively unexamined in the literature; the long-term effects of such an experience have received even less attention. In this study, grounded theory techniques for the analysis of qualitative data were used to analyze a series of intensive, semistructured interviews with 12 adults who, in their early adolescence, lost a sibling. Long-term outcomes included psychological growth, a sense of feeling different, and withdrawal from peers. The study presents a theoretic scheme relating these outcomes. The sense of personal growth and maturity arouses feelings of being different from peers, and may result in an intolerance of the developmentally appropriate behaviors demonstrated by peers. Some siblings respond to these feelings by withdrawing from their peers at a time when peer relationships are critical to completing developmental tasks. For such siblings, feelings of sadness and loneliness become long-term.
1991-01
Davies B
Journal Of Adolescent Research
1991
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Journal Article
<a href="http://doi.org/10.1177/074355489161007" target="_blank" rel="noreferrer">10.1177/074355489161007</a>
Weaving for the future: using rulers and roses
Humans; Leadership; Nurse's Role; Organizational Objectives; Evidence-Based Medicine; Forecasting; Models; Administration; Nursing; Nursing Process; Biomedical; Nursing Research/organization &; Oncologic Nursing/education/organization &; Technology Assessment
2001
Davies B
Canadian Oncology Nursing Journal
2001
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Journal Article
<a href="http://doi.org/10.5737/1181912x113118122" target="_blank" rel="noreferrer">10.5737/1181912x113118122</a>
Assessment of need for a children's hospice program
Child; Humans; Grief; Canada; Health Services Needs and Demand; Death; Child Health Services; Program Development; PPC Book Chapter 2011 (Kim Widger); adolescent; Preschool; hospice care
Canuck Place, North America's first free-standing pediatric hospice of its kind, opened in 1995 in British Columbia, Canada. The province-wide program encompasses a broad spectrum of services intended to support community-based care and provide periodic, facility-based respite and palliative care to children with life-threatening, progressive illness and to their families. Loss and grief support is another integral component of the program. The concept of pediatric hospice care is founded on the premise that dying children and their families can benefit from care designed to maximize present quality of life; yet, the creation of such programs must be based on demonstrated need. One vital step in the development of the Canuck Place program was assessing the need for such a program within the province. Data from both traditional quantitative and less traditional qualitative sources were used to document and put forth an argument in support of developing a children's hospice program. The final report addressed several components that are summarized in this article for the purposes of assisting others who may wish to undertake similar projects in their own communities.
1996
Davies B
Death Studies
1996
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Journal Article
<a href="http://doi.org/10.1080/07481189608252780" target="_blank" rel="noreferrer">10.1080/07481189608252780</a>
Shared life space and sibling bereavement responses.
bereavement; IM; sibling bereavement; N
1988-12
Davies B
Cancer Nursing
1988
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Journal Article
The family environment in bereaved families and its relationship to surviving sibling behavior
Family
1988
Davies B
Child Health Care
1988
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Journal Article
<a href="http://doi.org/10.1207/s15326888chc1701_4" target="_blank" rel="noreferrer">10.1207/s15326888chc1701_4</a>
The wisdom of children
Child; Humans; Attitude to Death; Child Psychology
2002
Davies B
International Journal Of Palliative Nursing
2002
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Journal Article
<a href="http://doi.org/10.12968/ijpn.2002.8.9.10686" target="_blank" rel="noreferrer">10.12968/ijpn.2002.8.9.10686</a>
Moving Family-centered Care Forward: Bereaved Fathers' Perspectives
Bereaved Fathers; Family-centered Care; Pediatric Health Care Providers Behaviors
This paper describes the key behaviors of "excellent" pediatric healthcare providers - a term used by fathers of children with complex, life-threatening illness to describe providers who consistently and effectively engage in family-centered care for children and their families. Using interview data from a multi-site grounded theory study of 60 fathers with a deceased child, five behaviors were identified: getting to know the family as individuals, talking about non-healthcare related topics, connecting in a human-human relationship, including parents as team members, and applying specialized knowledge to help the family. These behaviors are consistent with the goals of family-centered care, but they are inconsistently practiced, resulting in less-than-optimal care for children and their families during periods of crisis and vulnerability. A renewed focus on relationship building and interactions with families is needed, as well as a re-evaluation of the training of pediatric healthcare providers.
Davies B; Baird J; Gudmundsdottir M
Journal Of Hospice And Palliative Nursing
2013
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<a href="https://doi.org/10.1097/NJH.0b013e3182765a2a" target="_blank" rel="noreferrer">10.1097/NJH.0b013e3182765a2a</a>
Addressing spirituality in pediatric hospice and palliative care
Child; Adult; Religion and Medicine; Needs Assessment; Religion and Psychology; Nursing Assessment; Family/psychology; Human; Child Psychology; Holistic Health; Practice Guidelines; Spirituality; Palliative Care/methods/psychology/standards; Pastoral Care/methods/standards; Pediatrics/methods
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.
2002
Davies B; Brenner P; Orloff S; Sumner L; Worden W
Journal Of Palliative Care
2002
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Journal Article
Culturally-sensitive information-sharing in pediatric palliative care
OBJECTIVES: This study aimed to learn about experiences of Mexican American and Chinese American families who require pediatric palliative care. This article describes parents' perceptions of information-sharing by health care providers during their child's hospitalizations and at their child's death. METHODS: The study used a retrospective design of grounded theory analysis. Participants included 36 parents (26 Mexican American and 10 Chinese American) from 28 families who experienced between 6 months and 5 years before study participation the death of a child who was aged
2010
Davies B; Contro N; Larson J; Widger K
Pediatrics
2010
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Journal Article
<a href="http://doi.org/10.1542/peds.2009-0722" target="_blank" rel="noreferrer">10.1542/peds.2009-0722</a>
Experiences of mothers in five countries whose child died of cancer
Child; Female; Humans; Male; United States; Palliative Care; Adult; Canada; Mother-Child Relations; Middle Aged; Attitude to Death; Cross-Cultural Comparison; adolescent; Preschool; bereavement; infant; Greece; Norway; Oncologic Nursing; Hong Kong; Neoplasms/nursing/psychology/therapy
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.
1998
Davies B; Deveau E; deVeber B; Howell D; Martinson I; Papadatou D; Pask E; Stevens M
Cancer Nursing
1998
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Journal Article
<a href="http://doi.org/10.1097/00002820-199810000-00001" target="_blank" rel="noreferrer">10.1097/00002820-199810000-00001</a>
Challenges of developing a children's hospice
Death; bereavement
Davies B; Eng B
Beyond The Innocence Of Childhood: Helping Children And Adolescents Cope With Death And Bereavement
1996
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Book/Book Section
Living in the dragon's shadow': Fathers' experiences of a child's life-limiting illness
Death; hospice; Fathers; SSHRC CURA; father experience; child's terminal illness; Death and Dying
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. (PsycINFO Database Record (c) 2007 APA, all rights reserved) (from the journal abstract)
Davies B; Gudmundsdottir M; Worden B; Orloff S; Sumner L; Brenner Paul
Death Studies
2004
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Journal Article
<a href="http://dx.doi.org/10.1080/07481180490254501" target="_blank" id="linkhttp:dx.doi.org10.108007481180490254501" title="http://dx.doi.org/10.1080/07481180490254501" rel="noreferrer">http://dx.doi.org/10.1080/07481180490254501</a>
Perceptions of discrimination among Mexican American families of seriously ill children
Middle Aged; Male; Young Adult; Child; Humans; Adult; Adolescent; Female; Child Preschool; Infant; Retrospective Studies; Critical Illness; California; Mexican Americans/px [Psychology]; Prejudice
This paper describes Mexican American family members' descriptions of perceived discrimination by pediatric health care providers (HCPs) and the families' reactions to the HCPs' discriminatory conduct. A retrospective, grounded theory design guided the overall study. Content analysis of interviews with 13 participants from 11 families who were recruited from two children's hospitals in Northern California resulted in numerous codes and revealed that participants perceived discrimination when they were treated differently from other, usually white, families. They believed they were treated differently because they were Mexican, because they were poor, because of language barriers, or because of their physical appearance.
Davies B; Larson J; Contro N; Cabrera AP
Journal of Palliative Medicine
2011
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<a href="http://doi.org/10.1089/jpm.2010.0315" target="_blank" rel="noreferrer noopener">10.1089/jpm.2010.0315</a>
Conducting a qualitative culture study of pediatric palliative care
While conducting a grounded theory study of Chinese American and Mexican American families' experiences in pediatric palliative care, we encountered a number of unanticipated challenges regarding project development, Institutional Review Boards, recruitment, data collection, and data analysis. In this article, we describe our experiences, strategies, and insights for the benefit of other researchers and clinicians in the field.
2009
Davies B; Larson J; Contro N; Reyes-Hailey C; Ablin AR; Chesla CA; Sourkes B; Cohen H
Qualitative Health Research
2009
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Journal Article
<a href="http://doi.org/10.1177/1049732308327346" target="_blank" rel="noreferrer">10.1177/1049732308327346</a>
Grief and bereavement in pediatric palliative care
Davies B; Limbo R; Jin J
Oxford Textbook Of Palliative Nursing
2010
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Book/Book Section
Challenges of conducting research in palliative care
Research
1995
Davies B; Reimer CJ; Brown P; Martens N
Omega
1995
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Journal Article
<a href="http://doi.org/10.2190/jx1k-amyb-ccqx-ng2b" target="_blank" rel="noreferrer">10.2190/jx1k-amyb-ccqx-ng2b</a>
Fading away: The experience of transition for families with terminal illness
Family
Davies B; Reimer JC; Brown P; Martens N
1995
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Book/Book Section
Barriers to palliative care for children: Perceptions of pediatric health care providers
Longitudinal Studies
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 children's 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.
2008
Davies B; Sehring SA; Partridge JC; Cooper BA; Hughes A; Philp JC; Amidi-Nouri A; Kramer RF
Pediatrics
2008
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Journal Article
<a href="http://doi.org/10.1542/peds.2006-3153" target="_blank" rel="noreferrer">10.1542/peds.2006-3153</a>
Manifestations of levels of functioning in grieving families
Family
1986
Davies B; Spinetta J; Martinson I; McClowry S; Kulenkamp E
Journal Of Family Issues
1986
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Journal Article
<a href="http://doi.org/10.1177/019251386007003005" target="_blank" rel="noreferrer">10.1177/019251386007003005</a>
Supporting families in palliative care.
Davies B; Steele R
Oxford Textbook Of Palliative Nursing
2010
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Book/Book Section
Challenges in identifying children for palliative care
Child; Attitude to Death; Pilot Projects; quality of life; patient care team; Caregivers/psychology; Human; Palliative Care; Attitude of Health Personnel; Patient Selection
1996
Davies B; Steele R
Journal Of Palliative Care
1996
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Journal Article
Best Practice In Provider/Parent Interaction
Pediatrics; Quality; Parents Experiences; Communication; Hospital Staff; Pediatric Palliative Care; Grounded Theory; Social Sciences; Biomedical; Family Perspectives; Qualitative Analysis; Empathy; Medicine; Practice Guidelines; Childs Death; Canada; Social Sciences; Interdisciplinary; Patient-provider; Reflection; Information Science & Library Science; Palliative Care; Relationships; Best Practice
In this 3-year prospective grounded theory study in three pediatric settings, we aimed to develop a conceptualization of best practice health care providers (BPHCPs) in interaction with parents of children with complex, chronic, life-threatening conditions. Analysis of semistructured interviews with 34 parents and 80 health care professionals (HCPs) and 88 observation periods of HCP/parent interactions indicated that BPHCPs shared a broad worldview; values of equity, family-centered care, and integrity; and a commitment to authentic engagement. BPHCPs engaged in direct care activities, in connecting behaviors, and in exquisitely attuning to particularities of the situation in the moment, resulting in positive outcomes for parents and HCPs. By focusing on what HCPs do well, findings showed that not only is it possible for HCPs to practice in this way, but those who do so are also recognized as being the best at what they do. We provide recommendations for practice and initial and ongoing professional education.
Davies B; Steele R; Krueger G; Albersheim S; Baird J; Bifirie M; Cadell S; Doane G; Garga D; Siden H; Strahlendorf C; Zhao Y
Qualitative Health Research
2016
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<a href="https://doi.org/10.1177/1049732316664712" target="_blank" rel="noreferrer noopener">10.1177/1049732316664712</a>
A typology of fatigue in children with cancer
Child; Female; Humans; Male; Adult; British Columbia; Hospitals; Alberta; Pediatric; adolescent; Preschool; Non-U.S. Gov't; Research Support; Adaptation; Psychological; Interviews; Fatigue/classification/complications/nursing/psychology; Neoplasms/complications/nursing
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.
2002
Davies B; Whitsett SF; Bruce A; McCarthy P
Journal Of Pediatric Oncology Nursing
2002
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Journal Article
<a href="http://doi.org/10.1053/jpon.2002.30012" target="_blank" rel="noreferrer">10.1053/jpon.2002.30012</a>
Research considerations in pediatric palliative care
Davies B; Widger K; Steele R; Cadell S; Siden H; Straatman L
In Wolff J, Sourkes B, & Hinds P (Eds.) Textbook of Interdisciplinary Pediatric Palliative Care, First Edition. New York: Elsevier, 96-103.
New York: Elsevier
2011
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Bereavement
Palliative Care; Terminal Care; Terminally Ill; Longitudinal Studies; Children; Chronic disease
Davies B; Worder W; Orloff S; Gudsmundsdottir M; Toce S; Sumner L
Palliative Care For Infants, Children And Adolescents: A Practical Handbook
2004
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Book/Book Section
Maintaining Integrity: How Nurses Navigate Boundaries in Pediatric Palliative Care
Humans; Professional-Family Relations; Palliative Care/px [Psychology]; Nursing Staff; Child; Female; Male; Nursing Methodology Research; Qualitative Research; Nursing; Palliative Care/mt [Methods]; Nurse-Patient Relations; Nursing Staff; Hospital/px [Psychology]; Critical Care Nursing/mt [Methods]; Nurse's Role/px [Psychology]; Hospital/og [Organization & Administration]; Philosophy
PURPOSE: To explore how nurses manage personal and professional boundaries in caring for seriously ill children and their families., DESIGN AND METHODS: Using a constructivist grounded theory approach, a convenience sample of 18 registered nurses from four practice sites was interviewed using a semi-structured interview guide., RESULTS: Nurses across the sites engaged in a process of maintaining integrity whereby they integrated two competing, yet essential, aspects of their nursing role - behaving professionally and connecting personally. When skillful in both aspects, nurses were satisfied that they provided high-quality, family-centered care to children and families within a clearly defined therapeutic relationship. At times, tension existed between these two aspects and nurses attempted to mitigate the tension. Unsuccessful mitigation attempts led to compromised integrity characterized by specific behavioral and emotional indicators. Successfully mitigating the tension with strategies that prioritized their own needs and healing, nurses eventually restored integrity. Maintaining integrity involved a continuous effort to preserve completeness of both oneself and one's nursing practice., CONCLUSIONS: Study findings provide a theoretical conceptualization to describe the process nurses use in navigating boundaries and contribute to an understanding for how this specialized area of care impacts health care providers., PRACTICE IMPLICATIONS: Work environments can better address the challenges of navigating boundaries through offering resources and support for nurses' emotional responses to caring for seriously ill children. Future research can further refine and expand the theoretical conceptualization of maintaining integrity presented in this paper and its potential applicability to other nursing specialties.Copyright © 2017 Elsevier Inc. All rights reserved.
Erikson A; Davies B
Journal of Pediatric Nursing
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.pedn.2017.02.031" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2017.02.031</a>
Bereaved Parents’ and Siblings’ Reports of Legacies Created by Children With Cancer
Child; Female; Humans; Male; Adult; Parents; Family Relations; Siblings; Qualitative Research; Time Factors; childhood cancer; adolescent; Adaptation; Psychological; bereavement; Psychological; Stress; bereaved parent; Neoplasms/psychology; sibling bereavement; bereaved sibling; legacy; pediatric death
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.
2009-11
Foster TL; Gilmer MJ; Davies B; Barrera M; Fairclough D; Vannatta K; Gerhardt CA
Journal Of Pediatric Oncology Nursing
2009
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/1043454209340322" target="_blank" rel="noreferrer">10.1177/1043454209340322</a>
Changes in siblings after the death of a child from cancer.
adolescent; Child; Cross-Sectional Studies; Female; Humans; Male; bereavement; Death; Neoplasms; Adult; Parents; Middle Aged; Siblings; Qualitative Research; Time Factors; Nursing Methodology Research; Adaptation; Psychological; IM; sibling bereavement; N
IMPLICATIONS FOR PRACTICE: Our findings offer guidance to improve aftercare for bereaved siblings and their families. Additional research is needed to further delineate the needs of bereaved siblings and to develop strategies to promote adaptation to loss.
Foster TL; Gilmer MJ; Vannatta K; Barrera M; Davies B; Dietrich MS; Fairclough DL; Gerhardt CA
Cancer Nursing
2012
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1097/NCC.0b013e3182365646" target="_blank" rel="noreferrer">10.1097/NCC.0b013e3182365646</a>