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
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/10.1007/s10880-021-09797-x" target="_blank" rel="noreferrer noopener">10.1007/s10880-021-09797-x</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>
Grief and growth in bereaved siblings: Interactions between different sources of social support
Bereavement; Grief; Interpersonal Interaction; Siblings; Social Support
The objective was to characterize the relation between different sources of school-based social support (friends, peers, and teachers) and bereaved siblings’ grief and grief-related growth and to examine whether nonparental sources of social support buffer the effects of low parent support on bereaved siblings. Families (N = 85) were recruited from cancer registries at 3 pediatric institutions 3–12 months after a child’s death. Bereaved siblings were 8–18 years old (M = 12.39, SD = 2.65) and majority female (58%) and White (74%). During home visits, siblings reported their perceptions of social support from parental and nonparental sources using the Social Support Scale for Children, as well as grief and grief-related growth using the Hogan Sibling Inventory of Bereavement. Parent, friend, and teacher support were positively correlated with grief-related growth, whereas parent and peer support were negatively correlated with grief for adolescents. Teacher and friend support significantly moderated the association between parent support and grief such that teacher and friend support accentuated the positive effects of parent support. Friend and peer support moderated associations between parent support and grief/growth for adolescents but not children. School-based social support, namely from friends, peers, and teachers, appears to facilitate the adjustment of bereaved siblings. Findings suggest that bereaved siblings may benefit from enhanced support from teachers and friends regardless of age, with middle/high school students particularly benefitting from increased support from close friends and peers. (PsycINFO Database Record (c) 2018 APA, all rights reserved) Impact and Implications—This study suggests that school-based social support may enhance the positive effect of parental support for bereaved siblings and, in the case of peer support, compensate for low parental support. Thus, bereaved siblings may benefit from social support from teachers and close friends across ages, with adolescents in middle/high school particularly benefitting from social support from peers and close friends. (PsycINFO Database Record (c) 2018 APA, all rights reserved)
Howard SKM; Russell C; Keim M; Barrera Maru; Gilmer Mary Jo; Foster AT; Compas BE; Fairclough DL; Davies B; Hogan Nancy; Young-Saleme T; Vannatta K; Gerhardt CA
School Psychology Quarterly
2018
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<a href="http://doi.org/10.1037/spq0000253" target="_blank" rel="noreferrer noopener">10.1037/spq0000253</a>
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
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<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>
Charting the territory: symptoms and functional assessment in children with progressive, non-curable conditions
PEDI Study; Metabolic; Neurodisability; Genetics
Background Children with progressive, non-curable genetic, metabolic, or neurological conditions require specialised care to enhance their quality of life. Prevention and relief of physical symptoms for these children needs to begin at diagnosis, yet, little is known about their patterns of symptoms and functional abilities.Aim To describe these children's symptoms, as well as how the children's condition affects them physically.Design Cross-sectional, baseline results from an observational, longitudinal study, Charting the Territory, that followed 275 children and their families.Setting/participants Seven tertiary care children's hospitals in Canada, 2 in the USA. Families were eligible based on the child's condition. A total of 275 children from 258 families participated.Results The 3 most common symptoms in these children were pain, sleep problems, and feeding difficulties; on average, they had 3.2 symptoms of concern. There was a pattern of under-reporting of children's symptoms for clinicians compared with parents. Regardless of use of associated medications, pain, feeding and constipation symptoms were often frequent and distressing. Children with a G/J tube had a higher total number of symptoms, and respiratory problems, pain, feeding difficulties and constipation were more likely to occur. They also tended to have frequent and distressing symptoms, and to need extensive mobility modifications which, in turn, were associated with higher numbers of symptoms.Conclusions These children experience multiple symptoms that have been previously documented individually, but not collectively. Effective interventions are needed to reduce their symptom burden. Future longitudinal analyses will examine which disease-modifying interventions improve, or do not improve, symptom burden.
2014-08
Steele R; Siden H; Cadell S; Davies B; Andrews GS; Feichtinger L; Singh M
Archives Of Disease In Childhood
2014
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Journal Article
<a href="http://doi.org/10.1136/archdischild-2013-305246" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2013-305246</a>
Can you give me respect? Experiences of the urban poor on a dedicated AIDS nursing home unit
2008
Hughes A; Davies B; Gudmundsdottir M
Journal Of The Association Of Nurses In Aids Care
2008
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Journal Article
<a href="http://doi.org/10.1016/j.jana.2008.04.008" target="_blank" rel="noreferrer">10.1016/j.jana.2008.04.008</a>
The integration of religious traditions in Japanese children's view of death and afterlife
2007
Sagara-Rosemeyer M; Davies B
Death Studies
2007
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Journal Article
<a href="http://doi.org/10.1080/07481180601100525" target="_blank" rel="noreferrer">10.1080/07481180601100525</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
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Journal Article
<a href="http://doi.org/10.1080/15524256.2010.529020" target="_blank" rel="noreferrer">10.1080/15524256.2010.529020</a>
Exploring the Supportive Care Model as a framework for pediatric palliative care
2009
Widger K; Steele R; Davies B; Oberle K
Journal Of Hospice & Palliative Nursing
2009
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Journal Article
<a href="http://doi.org/10.1097/njh.0b013e3181aada87" target="_blank" rel="noreferrer">10.1097/njh.0b013e3181aada87</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>
Chemotherapy-related fatigue in childhood cancer: correlates, consequences, and coping strategies
Child; Humans; Parents; Questionnaires; Adaptation; Psychological; Antineoplastic Agents/adverse effects; Fatigue/chemically induced; Neoplasms/drug therapy/psychology
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 child's 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.
2008
Whitsett SF; Gudmundsdottir M; Davies B; McCarthy P; Friedman D
Journal Of Pediatric Oncology Nursing
2008
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Journal Article
<a href="http://doi.org/10.1177/1043454208315546" target="_blank" rel="noreferrer">10.1177/1043454208315546</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>
Designing and implementing a longitudinal study of children with neurological, genetic or metabolic conditions: charting the territory
Child; Humans; Canada; Longitudinal Studies; Mental Disorders; Biomedical Research; PEDI Study; Metabolic Diseases; Genetic Diseases; Inborn; Biomedical Research/methods; Canada; Child; Genetic Diseases Inborn/therapy; Humans; Longitudinal Studies/methods; Mental Disorders/therapy; Metabolic Diseases/therapy
BACKGROUND: Children with progressive metabolic, neurological, or chromosomal conditions and their families anticipate an unknown lifespan, endure unstable and often painful symptoms, and cope with erratic emotional and spiritual crises as the condition progresses along an uncertain trajectory towards death. Much is known about the genetics and pathophysiology of these diseases, but very little has been documented about the trajectory of symptoms for children with these conditions or the associated experience of their families. A longitudinal study design will help to close this gap in knowledge. METHODS/DESIGN: Charting the Territory is a longitudinal descriptive, correlational study currently underway with children 0-19 years who are diagnosed with progressive neurological, metabolic, or chromosomal conditions and their families. The purpose of the study is to determine and document the clinical progression of the condition and the associated bio-psychosocial-spiritual experiences of the parents and siblings age 7-18 years. Approximately 300 families, both newly diagnosed children and those with established conditions, are being recruited in six Canadian cities. Children and their families are being followed for a minimum of 18 months, depending on when they enroll in the study. Family data collection will continue after the child's death if the child dies during the study period. Data collection includes monthly parental assessment of the child's symptoms; an annual functional assessment of the child; and completion of established instruments every 6 months by parents to assess family functioning, marital satisfaction, health status, anxiety, depression, stress, burden, grief, spirituality, and growth, and by siblings to assess coping and health. Impact of participation on parents is assessed after 1 year and at the end of the study. Chart reviews are conducted at enrollment and at the conclusion of the study or at the time of the child's death. DISCUSSION: Knowledge developed from this study will provide some of the first-ever detailed descriptions of the clinical symptom trajectory of these non-curable progressive conditions and the bio-psychosocial-spiritual aspects for families, from diagnosis through bereavement. Information about developing and implementing this study may be useful to other researchers who are interested in designing a longitudinal study.
Siden H; Steele R; Brant R; Cadell S; Davies B; Straatman L; Widger K; Andrews GS
BMC Pediatrics
2010
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Journal Article
<a href="http://doi.org/10.1186/1471-2431-10-67" target="_blank" rel="noreferrer noopener">10.1186/1471-2431-10-67</a>
Everyday struggling to survive: Experiences of the urban poor living with advanced cancer.
ONS Excellence in Cancer Nursing Research Award
2007
Hughes A; Gudmundsdottir M; Davies B
Oncology Nursing Forum
2007
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Journal Article
<a href="http://doi.org/10.1188/07.onf.1113-1118" target="_blank" rel="noreferrer">10.1188/07.onf.1113-1118</a>
Families' transition to a Canadian paediatric hospice. Part one: planning a pilot study
Child; Humans; Palliative Care; Pediatrics; Canada; Health Planning; Health Services Needs and Demand; Pilot Projects; NET CV; Hospices/organization & administration
This article describes the rationale for planning and conducting a qualitative pilot study about families' transition to a Canadian paediatric hospice. Discussion includes: background information and a literature review pertinent to the study; debate around the term 'hospice' versus 'palliative care'; the different and unique needs of children requiring a palliative approach compared with adult hospice patients; and information about planning and beginning the study, including the rationale for a pilot, details about the study site, recruitment and procedures, and data collection and analysis. The results from the pilot study, as well as implications for practice and research are reported in part two.
2008
Steele R; Derman S; Cadell S; Davies B; Siden H; Straatman L
International Journal Of Palliative Nursing
2008
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Journal Article
<a href="http://doi.org/10.12968/ijpn.2008.14.5.29492" target="_blank" rel="noreferrer">10.12968/ijpn.2008.14.5.29492</a>
Families' transition to a Canadian paediatric hospice. Part two: results of a pilot study
Child; Female; Humans; Male; Canada; Pilot Projects; Patient Acceptance of Health Care; Research Design; Feasibility Studies; Hospices; Hospitals; Respite Care; Pediatric; adolescent; Preschool; infant; Parents/psychology; NET CV; Health Services Research/methods; Catastrophic Illness
The results from a pilot study are reported in this article, part two of a two-part paper. The experiences of parents (six mothers and two fathers) are described as their families transitioned to the Canuck Place Children's Hospice (CPHC) in Canada. The perspectives of non-hospice health care professionals (n=4) involved in the child's care are explored. Data were gathered through audio-taped, semi-structured interviews. Initially, parents and health professionals were unaware that the hospice provided more than just end-of-life services. Parents began to consider hospice care when something changed in their lives that forced them to see things differently. This became the impetus for recognizing that CPCH might be a resource for their family. The prospect of respite care was usually the deciding factor in applying to the hospice. Parents reported benefits of hospice respite for themselves and the whole family. Recommendations for practice and future research are offered, including discussion about the feasibility of the study procedures.
2008
Steele R; Derman S; Cadell S; Davies B; Siden H; Straatman L
International Journal Of Palliative Nursing
2008
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Journal Article
<a href="http://doi.org/10.12968/ijpn.2008.14.6.30024" target="_blank" rel="noreferrer">10.12968/ijpn.2008.14.6.30024</a>
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>
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>
The relationship between grief adjustment and continuing bonds for parents who have lost a child
Female; Humans; infant; Male; Grief; Adult; Parent-Child Relations; Interpersonal Relations; Questionnaires; Attitude to Death; Life Change Events; quality of life; adolescent; Adaptation; Psychological; infant; Newborn; Parents/psychology; Object Attachment
This article presents findings from a study on the impact of a child's death on parents. We explored the prominence and adaptiveness of parents' continuing bonds expressions, psychological adjustment, and grief reactions. A qualitative case study methodology was used to describe six cases. Participants were classified into two groups based on scores on the Inventory of Complicated Grief. Commonalities in themes on the Continuing Bonds Interview and projective drawings were assessed. Those in the Non-Complicated Grief Group reported internalization of positive qualities and identification with the deceased child as a role model, whereas participants in the Complicated Grief Group did not report these experiences. In addition, the drawings of those in the Non-Complicated Grief Group were evaluated as more adaptive than those in the Complicated Grief Group.
2009
Ronen R; Packman W; Field NP; Davies B; Kramer R; Long JK
Omega
2009
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Journal Article
<a href="http://doi.org/10.2190/om.60.1.a" target="_blank" rel="noreferrer">10.2190/om.60.1.a</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
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Journal Article
<a href="http://doi.org/10.1177/1043454209340322" target="_blank" rel="noreferrer">10.1177/1043454209340322</a>
Mindfulness in hospice care: Practicing meditation in action
2005
Bruce A; Davies B
Qualitative Health Research
2005
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Journal Article
<a href="http://doi.org/10.1177/1049732305281657" target="_blank" rel="noreferrer">10.1177/1049732305281657</a>
Impact on parents when a child has a progressive, life-threatening illness.
Child; Humans; Palliative Care; Pediatrics; Parent-Child Relations; Disease Progression; Longitudinal Studies
Children with neurodegenerative, life-threatening illnesses (NLTIs) account for a significant proportion of children requiring palliative care, yet there is a lack of of research that examines families' experiences. This grounded theory study generated a contextually-grounded description of the experiences of families living with a child who has an NLTI. Data were collected from eight families (n=29 family members) through observations and audiotaped interviews. The impact on parents was pervasive and multidimensional. Parents faced many emotional, physical, financial, and spiritual impacts on their lives. Parents often needed help to alleviate the impact of their experience, but it was not always available in a useful manner. Despite the negative aspects, caring for the child was never viewed by parents as a burden. Fatigue was a particularly prevalent symptom that held the potential to impact on parents in multiple ways. Suggestions for practice and research are offered to assist health care professionals in providing optimal pediatric palliative care to these families.
2006
Steele R; Davies B
International Journal Of Palliative Nursing
2006
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Journal Article
<a href="http://doi.org/10.12968/ijpn.2006.12.12.22544" target="_blank" rel="noreferrer">10.12968/ijpn.2006.12.12.22544</a>
Sibling bereavement and continuing bonds.
Child; Humans; Adult; Interpersonal Relations; adolescent; Adaptation; Psychological; bereavement; sibling bereavement; SSHRC CURA; Siblings/psychology; T
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.
2006-11
Packman W; Horsley H; Davies B; Kramer R
Death Studies
2006
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Journal Article
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
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://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>
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
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/10.1053/jpon.2002.30012" target="_blank" rel="noreferrer">10.1053/jpon.2002.30012</a>
Mourning and meaning
Grief; bereavement; mourning
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 promopt personal growth as well as despair, augmenting rather than only reducing the survivor's sense of meaning.
2002
Neimeyer RA; Prigerson HG; Davies B
American Behavioral Scientist
2002
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Journal Article
<a href="http://doi.org/10.1177/000276402236676" target="_blank" rel="noreferrer">10.1177/000276402236676</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>
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
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>
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 empty space phenomenon: The process of grief in the bereaved family
SSHRC CURA
1987
McClowry S; Davies B; May A; Kulenkamp E; Martinson I
Death Studies
1987
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Journal Article
<a href="http://doi.org/10.1080/07481188708252200" target="_blank" rel="noreferrer">10.1080/07481188708252200</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
Parental depression following the death of a child
Child; Death; Depression
1991
Martinson I; Davies B; McClowry S
Death Studies
1991
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Journal Article
<a href="http://doi.org/10.1080/07481189108252429" target="_blank" rel="noreferrer">10.1080/07481189108252429</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>
Comparing parent loss with sibling loss
adolescent; Child; Female; Humans; Male; United States; bereavement; Canada; Parent-Child Relations; Sex Factors; Sibling Relations; adolescent; bereavement; Comparative Study; Psychological Tests; sibling bereavement
The death of a loved one is a traumatic loss for children, but little attention has been paid to how children's responses vary according to who died--a parent or a sibling. This article reports the findings of a comparison between children's responses to parent and sibling loss. Two samples of bereaved children were combined for the project, which compared children's scores on the Achenbach Child Behavior Checklist. Findings indicated that there were no significant differences between the two loss groups in the total number of problems, in any of the syndrome scales, or in the percentage of children at risk. However, when the two loss groups were considered by gender, differences appeared--boys were more impacted by the loss of a parent than by the loss of a sibling and girls were most affected by the loss of a sibling, particularly a sister. Possible explanations for these differences are discussed.
1999-02
Worden JW; Davies B; McCown D
Death Studies
1999
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Journal Article
<a href="http://doi.org/10.1080/074811899201163" target="_blank" rel="noreferrer">10.1080/074811899201163</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>
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
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Journal Article
<a href="http://doi.org/10.1097/00002820-200004000-00011" target="_blank" rel="noreferrer">10.1097/00002820-200004000-00011</a>
A theory of healing in the aftermath of youth suicide. Implications for holistic nursing practice
Child; Female; Humans; Male; Adult; Questionnaires; Aged; Middle Aged; Life Change Events; Holistic Health; Holistic Nursing; Love; Suicide; adolescent; Non-U.S. Gov't; Research Support; Adaptation; Psychological; Family/psychology; Mental Healing
The purpose of this family-focused, grounded-theory study was to develop a substantive theory that explains how individual family members heal in the aftermath of youth suicide. Individual healing following youth suicide is conceptualized as a process of "journeying toward wholeness." In response to youth suicide, survivors characteristically tap into their innate strengths and coping capabilities. Eventually, most survivors move toward healing. Precipitated by youth suicide, individual healing was found to be a contextually mediated, ongoing, dynamic, and recursive process. Most often initiated by a family survivor who was emotionally and spiritually close to the youth prior to suicide, healing emanated from the survivor's consciousness as an act of volition. This study brings to light the idea that bereaved family survivors of youth suicide have the potential to heal in response to the decisions they make and the healthy bonds they create and maintain between themselves and the deceased youth.
2001
Kalischuk RG; Davies B
Journal Of Holistic Nursing
2001
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Journal Article
<a href="http://doi.org/10.1177/089801010101900206" target="_blank" rel="noreferrer">10.1177/089801010101900206</a>
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>
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
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/10.5737/1181912x113118122" target="_blank" rel="noreferrer">10.5737/1181912x113118122</a>